POZ Community Forums

Main Forums => Living With HIV => Topic started by: Moffie65 on March 06, 2010, 11:49:52 am

Title: For those of you who might be questioning HAART, or maybe when to start.
Post by: Moffie65 on March 06, 2010, 11:49:52 am
For those of you who are debating the efficacy of Highly Active Antiretroviral Therapy, (HAART), and there are a few more here on these fora than is currently comfortable in my book; I have decided to place on the screen some of the “Opportunistic Infections” that I have experienced, and have seen in some close friends, who are no longer here to witness to the efficacy of HAART, because they died already.  The score at the end of each OI, is how it has affected me with deaths, or damage to, friends and acquaintances.

Progressive Multifocal Leukoencephalopathy (PML):

This one is insidious, and occurs in 85% of the population at large.  Most healthy people can shake this one off, with little or no damage.  However, when HIV and a low CD4 count are added to the mix, this one is usually deadly, and can permanently damage your brain, vision, movement or any other bodily function controlled by the brain.  At its’ worst, it causes the brain to swell up and you die.  (I’ve buried three to this one)

Mycobacterium Avium Complex (MAC):

This one I have experienced personally and it is a total bitch to not only treat but to live with.  The symptoms are not terribly revealing, but the damage to internal organs is permanent.  I will more than likely die of liver failure, because of this disease, and the permanent damage to my liver function.  Of course, this makes HAART a bit of a crap shoot also, since many HIV drugs are processed in the liver, therefore making it difficult for your immune system to recover.  Since MAC is virtually everywhere, a low CD4 is almost a guarantee that you will have a go at this one, if HIV is left untreated.  (I’ve buried two to this one)

Kaposi's Sarcoma (KS):

This one came on with my CD4 at about 275, and stayed for about six months while I vigorously stuck to my HIV regimen to try to live long enough for it to leave.  This one is particularly deadly if you have a very low CD4, and unfortunately usually starts on the skin, and then moves inside the body and quietly and slowly destroys your organs.  Untreated HIV and untreated KS together will kill you.  (I’ve buried about 20 to this one)

Lymphomas:

This was the first of my “sides”, and occurred early on in my infection.  I was so despondent, and ill, I remember very little of it except the 35 pound weight loss in a one week period.  No, I am not a large man, and weighed 170 when I started with this, and am six feet tall.  Can you say Skeletal? 

Cytomegalovirus (CMV):

This one I have escaped, but is found in 75% of HIV+ people.  I have had three friends who got this one, and one was blinded within two weeks, another was blinded within a month, and another had his vision severely damaged in two months.  CMV is unrelenting, and damages our bodies permanently.  If you can afford to go throughout your life without seeing what is going on, then you probably don’t worry about this one.  (About six are now blind to this one)

Pneumocystis Pneumonia (PCP):

This one is the real prize and occurs in many with low CD4s.  It is no cakewalk, and if you happen to be allergic to the therapy, like I am, it can very easily kill you pretty quickly.  This one came on 11 years after my infection, and came on slowly, like an unwanted guest that just wouldn’t leave.  Afternoon fevers of about 101 every day for a couple of months.  Then after another 35 pound weight loss, finally hospitalized, only to find out I cannot take Bactrim.  Oh well.  I was given another prophylactic to try to gain victory over this insidious bug, and it didn’t work, and I ended up in the hospital again for 10 days while I became desensitized to the reaction to Bactrim, by spending three of those days in Intensive Care, while I was pumped full of the medication.  I finally recovered, and have ditched my Bactrim because my CD4s are now above 500.  (I’ve buried about 97 to this one)

I created this thread, because some of you are obviously not familiar with the Lessons on this site, and haven’t read about all the deadly illnesses that can take us out, unceremoniously.  Trouble is, having been in a “near death” place more than twice with this disease; I know for a fact that if some of you who are questioning HAART, will become deathly ill in a very short time span, and the last thing that will cross your mind is to re-visit this site to confirm your disbelief in HAART, simply because you will be shortly dead.

I find it very sad that the “new” definition of HIV/AIDS has left out the “Terminal if untreated” part.  Just because of the agendas of the Pharmaceutical companies and the lack of brains and heart of the politicians of the world; we now have to live and deal with a disease that will possibly cause our death, yet it is now defined as “chronic manageable”.  Don’t you all understand that now, under the new definition, WE are at fault if we die from the effects of HIV/AIDS.  Never will it be questioned that maybe we had a virus that was highly drug resistant, or that treatment failure once again, took us out.  That heart attack that was caused by the increased lipids from the drugs we have to take, wasn’t the fault of Norvir, no way, it had to be our fault because the drugs would never cause death. 

Wake up folks, this disease needs to be studied, and we all need to know everything we can learn on the subject.  By clicking on “All About HIV” in the bar above, you will find everything you need to know right here on this site, and learning “everything”, you just might save your own life.   ;)
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: RapidRod on March 06, 2010, 12:10:13 pm
Tim, you coated the IO very kindly. That is a very small number of the OI's that is possible for one to contract. I've have Disseminated histoplasmosis and have been fighting it for 5 years and will continue to fight it for life.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Hellraiser on March 06, 2010, 12:34:37 pm
An absolutely phenomenal post about why people questioning HAART need to wake the hell up.  The disease is deadly.  HAART is the best weapon against it.  The side effects aren't always pleasant but are much better than what the disease will hand you.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Moffie65 on March 06, 2010, 01:36:09 pm
Rod, yes, it did occur to me that many will read this post as "the only dangerous ones".  However, I did state that these are the ones I have had to deal with or those that friends have struggled with.  I am really sad that you have been dealing with Histoplasmosis, as it is really a bitch and keeps you feeling shitty too much.  Wow buddy, I am truly sorry to hear of your struggle.  Also, I didn't include all of the ones that I have struggled with, or am struggling with currently, simply because of brevity.  I would hope that people would follow the suggestion and read all about every OI in the Lessons section.  It is truly important.  I was surprised to see that many can happen with a CD4 anywhere UNDER 500, that was a surprise, but then I got KS with a CD4 well above 200.

Hellraiser, thanks for the comments, and I hope this thread helps you in some way.  :)
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: RapidRod on March 06, 2010, 01:45:20 pm
Rod, yes, it did occur to me that many will read this post as "the only dangerous ones".  However, I did state that these are the ones I have had to deal with or those that friends have struggled with.  I am really sad that you have been dealing with Histoplasmosis, as it is really a bitch and keeps you feeling shitty too much.  Wow buddy, I am truly sorry to hear of your struggle.  Also, I didn't include all of the ones that I have struggled with, or am struggling with currently, simply because of brevity.  I would hope that people would follow the suggestion and read all about every OI in the Lessons section.  It is truly important.  I was surprised to see that many can happen with a CD4 anywhere UNDER 500, that was a surprise, but then I got KS with a CD4 well above 200.

Hellraiser, thanks for the comments, and I hope this thread helps you in some way.  :)
;)
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: emeraldize on March 06, 2010, 02:02:09 pm
Thanks, Tim.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: aztecan on March 06, 2010, 05:07:13 pm
Well done Tim. You were spot on.

I lost someone to PML on New Year's Eve. I hadn't seen it in years, then suddenly, I know more than one person who is dealing with it, or rather, was.

About a year ago, I saw a man die whose KS lesions were so pronounced it had disfigured him. It was not am image I can easily forget.

I could go down the list you gave us. I wish people would realize that, regardless of the issues they think they may have with meds, and certainly regardless of their belief they can take care of themselves with herbs, green tea and aromatherapy, I know what happens when you eschew HAART.

Thanks again for posting neighbor.

HUGS,

Mark
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: BT65 on March 06, 2010, 06:43:58 pm
Daddy Tim, thanks for this.  The very first personal friend's death to AIDS back in the day was something I'll never forget.  He died from KS, lymphoma and lung cancer.  And PML, wow.  I saw one of my best friends go to the cognitive age of 3 in about 3 weeks when it advanced.  It was so sad when he passed.  And one of my friends who's still alive lost her eyesight to CMV years and years ago.  I remember one of my friends, who lost her battle with AIDS to toxoplasmosis.  She ended up in a nursing home right before she died, because her mother and boyfriend could no longer handle her.  The toxo had ate up her brain pretty good, as well as her body. And one of my friends who died from MAC, whose food came out looking in about 2 seconds after ingesting it, looking the same way it did when it went in his mouth.  And on, and on.......
 
Too often, those who haven't experienced multiple horrific deaths because of AIDS progression, seem to treat taking meds as the end of their lives.  Maybe I'm not sensitive enough, because to me it's just foolish, and an extremely cowardly mistake.  I've been on meds since 1990.  They've come a long way, for sure.  And maybe we don't know all the long-term effects of every single one of the meds, but we sure do know the end result of not taking them when warranted.  The choice is simple, for me.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: YaKaMein on March 07, 2010, 01:10:48 am
Sure hope many appreciate the value of the testimony of Moffie, Rapid, Mark & BT65. Take heed of the what these warriors and others offer. I do. - YaKa
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: tednlou2 on March 07, 2010, 01:59:01 am
I was wondering if any of you can clarify the info about PML.  I ask because I was just reading a post to Dr. Gallant about PML.  He said PML is extremely rare.  You're saying 85% of all people have it, but HIV neg people are just better able to get rid of it?  He said an HIVer is more likely to get into a car accident than get PML.  Is this mainly something that happened in the past before HAART?

http://www.hopkins-aids.edu/q_a/patient/recent_questions/10__lymphoma_risk__surely_not..html?contentInstanceId=517054&siteId=7151


I wanted to ask about the other OI's as well.  We are all told that we don't have to worry about these awful OI's until our CD4's are 200 or below.  I've heard others say they've gotten some of them at higher numbers.  You got lymphoma shortly after infection when your immune system was still in good shape?  Is this something that is rare in people newly infected or in people with high CD4's?  About CMV, do you think the 75% number is due to most people don't know they are infected until their immune systems are shot? 

Just one last question--  Are you talking about people in denial about HIV and think they are healthy even though their CD4's are dropping to dangerous levels?  Or, are you making the case that everyone infected (those of us told to hold off on meds until CD4 500 or below) should be on HAART?  Everytime I read about those OI's I get anxious.  I'm just wondering if you disagree with the current treatment guidelines or you're talking about HIVers who think a CD4 of 200 or below is just fine?
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: veritas on March 07, 2010, 06:07:30 am

moffie65,

Smart and sobering post.

DO NOT FOOL WITH THIS DISEASE!   IT CAN KILL YOU IN A NUMBER OF WAYS!

Even LTNP don't know what damage is being done as they continue to carry a "controlled" viral load with a decent cd4 count.

Starting medication is certainly a personal decision, but listen closely to your body while pondering that decision.

v
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Tim Horn on March 07, 2010, 07:28:21 am
I was wondering if any of you can clarify the info about PML.  I ask because I was just reading a post to Dr. Gallant about PML.  He said PML is extremely rare.  You're saying 85% of all people have it, but HIV neg people are just better able to get rid of it?  He said an HIVer is more likely to get into a car accident than get PML.

Tednlou:

What Moffie's talking about is the actually prevalence of the JC virus -- the microorganism believed to be responsible for the destruction of healthy brain tissue in people with PML. The virus can be found lying dormant in the central nervous systems of 85 to 90 percent of adults all over the world; it truly is an ubiquitous bug. In fact, its one of those infections that people never really "get rid of," but rather have healthy enough immune systems to keep in check for the duration of their lives. Fortunately, JC virus rarely causes problems among people living with HIV, even those with serious suppressed immune systems -- but the risk is very much there for those with CD4 counts in the double digits.  

In this way, JC virus is like numerous other viral infections -- including herpes simplex virus II, varicella (the chickenpox virus), human herpes virus-8 (responsible for KS), and cytomegalovirus. These viruses are quite common in the adult population (the prevalence of CMV infection, for example, exceeds 90 percent among men who have sex with men in some series), but as a rule, they're only likely to cause disease -- to take the "opportunity" to cause illness  -- in those without the immune systems to keep them at bay. (The microorganisms responsible for PCP and MAC work somewhat similarly -- these are ubiquitous in the environment and humans are exposed to them on a regular basis; only those with compromised immune systems are likely to develop serious disease from these otherwise harmless bugs; a fungus and bacterium, respectively).

As for lymphoma, this is one of those cancers that can strike at any CD4 cell count -- I was diagnosed with non-Hodgkin's lymphoma with a CD4 count of 450 cells back in 1996. As the CD4 count falls, the risk of cancers like NHL increase.

This may have more to do with chronic inflammation -- an issue Moffie didn't even tough on in his clear-eyed message -- that appears to accompany untreated HIV infection. In short, when HIV continues to do what it does on a daily basis, it's not just CD4 cells that suffer.... researchers are discovering that it leads to a cascade of events, including the production of various inflammatory cytokines (cellular proteins that are helpful during acute illnesses, but potentially damaging when produced in abundance over time) and irregularities of other immune system cells (such as B cells, which are primarily responsible for lymphomas in people living with HIV) that can increase the risk of certain cancers at any CD4 cell count.  

Inflammation, a number of researchers believe, may explain many of the "non-AIDS" complications that are being seen in higher numbers among people living with HIV compared with age-matched individuals in the general population. Higher rates of atherosclerosis (arterial plaques), for example, among HIV-positive people not on treatment. For reasons that aren't clear, HIV appears to be associated with increases in various markers of inflammation -- e.g., C-reactive protein, a "biomarker" of vascular disease -- that tend to normalize once treatment is started (and maintained).

The paradox, of course, is that ARV therapy can also cause increases in markers -- such as cholesterol levels and triglycerides -- responsible for cardiovascular disease. But, in reviewing the data published thus far (results from the SMART study for example; we've written about this quite a bit on AIDSmeds.com), it appears that the CVD risks of untreated HIV infection outweigh the CVD risks associated with ARV treatment, especially when using the more lipid-friendly agents available today.

Fortunately, researchers are beginning to take seriously the prospect of using anti-inflammatories in people living with HIV, including the possibility of using them in those who may not need or be ready for full-on ARV treatment. Unfortunately, this research is still in its infancy, thus ARV therapy is still viewed as the best way to not only maintain the health of the immune system, but also the best way to keep HIV replication in check and, with it, to calm the inflammatory response to the virus.

Tim Horn
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Moffie65 on March 07, 2010, 11:01:56 am
Thanks all of you who responded.  I especially like the witness of some of your posts, as our experiences are certainly bolstered by those of you who have listed your experiences with these Opportunistic Infections.

Tim, a special thanks to you for the clarifying post, and the update on some of the newer studies.  I cannot keep up any more, but I am grateful that you and others have chosen this disease and its impact on the world, to make into your careers.  It is a full time job, just to keep up.  Thanks again, and I trust that Tednlou has now more clarity, as I do.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: bear60 on March 07, 2010, 12:53:30 pm
I was wondering if any of you can clarify the info about PML.  I ask because I was just reading a post to Dr. Gallant about PML.  He said PML is extremely rare.  You're saying 85% of all people have it, but HIV neg people are just better able to get rid of it?  He said an HIVer is more likely to get into a car accident than get PML.  Is this mainly something that happened in the past before HAART?
quote TednLou
I just had to add that a good friend of mine died from PML a couple of years ago.  He started out with inappropriate behavior and mood swings, eventually had a seizure ( it looked like a stroke) and then after a biopsy of brain tissue, he was diagnosed with PML.  He lost his ability to talk and walk and died only a few weeks after he had the seizure.

Opportunistic infections are the worst!

Another friend of mine died from Lymphoma.

Another friend of mine died from CMV
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: griezzel on March 07, 2010, 02:32:54 pm
While it's certainly true that the fear of side effects keeps a large percentage of people from starting therapy, I'm pretty certain that using fear and attempting to scare them into taking meds is not the best approach. I have found the tone of many people's posts, who advocate taking meds over waiting, sooner rather than later, and some that responded to my concerns about possible side-effects, to be disturbing and even offensive.

Like it or not, the fear of pharmaceutical side-effects can be just as powerful as the fear of disease, even stronger in some cases. Each person with this fear must come to understand the facts and risks of treatment for themselves, talking with their (hopefully well-informed) doctor about specific areas of concern related to their unique physiology and medical history.

Most of us have been conditioned against scare tactics since we were children. It turns out that children are usually much smarter than they are given credit for and can make appropiate choices when given all the facts and the opportunity. Adults may be even less inclined or able to make good decisions, however, based on our "wealth" of personal experience, which tends to affect our judgement.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Ann on March 07, 2010, 02:41:56 pm
Griezzel,

While I understand what you're saying about scare tactics, that term usually applies to greatly exaggerated possibilities.

However, the gruesome deaths that accompany untreated hiv infection that has progressed to aids cannot be exaggerated. Death isn't a exaggerated possibility, it's a certainty. There's just no way of sugar-coating it or downplaying it. To talk about what happens when someone has untreated aids is not to use scare tactics, it's to tell the truth of the matter. Scare tactics. Honesty.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Moffie65 on March 07, 2010, 03:24:16 pm
I wanted to check back in to clarify some of the OP.  PML is something I was completely unaware of before I left California.  When I arrived in New Mexico, a rather rural state, I became aware of not only PML, but also Valley Fever.  Valley Fever is not listed in HIV OIs but is predominant in the areas of the southwest U.S. because of so many people that live in rural areas with lots of dirt and livestock. 

While I cannot correlate the difference between living in rural areas in relation to the prevalence of PML, it is more dominant here than where I lived near the ocean.  It also is occurring in other people who have compromised immune systems for other reasons, and my Infectious Disease Doctor in Tucson, tells me that PML occurs here more than other regions of the country, but he is also puzzled by this fact.

Grizzel;  Please understand that this thread has nothing to do with scaring anyone, it was created to educate regarding the true facts of "Living with HIV" and the things we all need to have knowledge about.  To brush all these facts under the rug and feign ignorance of the truth, is dangerous, and life threatening.  I encourage you to read, and study all the lessons in this site, and to pay particular attention to the Opportunistic Infections area.  It is vitally important, regardless of how much it scares you, or anyone else for that matter. 
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: griezzel on March 07, 2010, 03:58:32 pm
As an older LTS and one that has lost many friends and loved ones to this plague, I am myself painfully aware of the realities of OI's and the danger of having a damaged immune system. And I am also aware there is a disturbing new trend among the younger and less informed populations who have a  naïve view of the consequences, be they probable or possible, of not starting ARVs at the appropiate time.

My purpose, I suppose, it just to offer a little support to those who, like myself until very recently, are afraid of the meds, because I understand this fear and some of the reasons for it.

I remember the sex ed classes of my youth that made us watch films showing those horrible, painful, disfiguring results of untreated veneral diseases. The horrors did little to dissuade anyone from unprotected sex, probably because the "education" was begun about 5 (10?) years too late, and the approach taken was less than ideal.

There are many reasons why people make decisions to gamble with their health. Indeed, few of them stand up to scutiny, but they seem valid to the people risking their future health for feeling good in the present.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: PeteNYNJ on March 07, 2010, 04:08:46 pm
Thanks for posting this, Tim

I don't think there are any "scare tactics" in the original post.  It is a first hand account of how these OIs can and will kill you if you chose not to take HAART at the appropriate time. 

I like the "fatal if not treated" part of the OP.  That really is something you don't see much in any of the literature anymore.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Miss Philicia on March 07, 2010, 04:13:59 pm

I don't think there are any "scare tactics" in the original post.

agreed
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: griezzel on March 07, 2010, 04:51:01 pm
It is vitally important, regardless of how much it scares you, or anyone else for that matter. 

Yes, and I agree. After rereading your OP I realize that my comments about side-effects were actually a change of subject. It seems you were addressing those that question the effectiveness of HAART meds, something I've not noticed occuring here. But I have noticed a lot of discussion about when to start meds and whether stopping and restarting is a good idea.

And I didn't mean to imply that you were simply trying to scare people into taking meds. I found the OP informative and very helpful, personally.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: heartforyou on March 07, 2010, 04:58:59 pm
Moffie,

You are so right.
With the quality and the efficiency of the new meds I would not doubt to start.

Thanks for this post.

Hermie
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: blackwingbear on March 07, 2010, 08:11:50 pm
Pneumocystis Pneumonia (PCP):

This one is the real prize and occurs in many with low CD4s.  It is no cakewalk, and if you happen to be allergic to the therapy, like I am, it can very easily kill you pretty quickly.  This one came on 11 years after my infection, and came on slowly, like an unwanted guest that just wouldn’t leave.  Afternoon fevers of about 101 every day for a couple of months.  Then after another 35 pound weight loss, finally hospitalized, only to find out I cannot take Bactrim.  Oh well.  I was given another prophylactic to try to gain victory over this insidious bug, and it didn’t work, and I ended up in the hospital again for 10 days while I became desensitized to the reaction to Bactrim, by spending three of those days in Intensive Care, while I was pumped full of the medication.  I finally recovered, and have ditched my Bactrim because my CD4s are now above 500.  (I’ve buried about 97 to this one)


I've had it and it almost did kill me.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: tednlou2 on March 08, 2010, 01:44:45 am
Moffie and Tim--and all,

Thanks for all the information.  I didn't think you were trying to scare anyone either.  I was just looking for clarification.  Tim, your detailed explanation really helped.  The research studies leave many of us wondering what to do.  The new guidelines say waiting until CD4 500 is a good plan.  However, there is so much mounting evidence about the unseen damage HIV is doing.  I read about people on meds doing so great, running marathons, etc.  I often wonder why I'm waiting around.   

I think many of us wait due to those guidelines.  And, we'll read an article about some health issue someone has that may be related to the meds.  We're told we aren't in danger until CD4 drops around 200.  Since we can't see the unseen damage HIV is doing until it manifests, we think we're better off waiting.  I know I definitely want to make the decision instead of it being made for me out of urgent necessity. 

Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: buffaloboy on March 08, 2010, 07:36:08 am
I think a  large part of the problem is that there's not enough reassurance about what will happen if somoene does experience side effects; oftentimes the attitude is a rather curt 'Well, it's better than dying, isn't it?'.

Obviously that statement is true and I wouldn't ever wish to underplay the seriousness of the infections that appear at low CD4 counts (by the way, aren't all infections 'opportunistic' in nature, whether one has HIV or not?). But I do think that doctors could be more sympathetic of the fear that people have about HIV treatments and work with the patient to explain how side effects can be diminished, treated, or possibly stopped altogether by switching to another regimen.

People who postpone starting HAART are not stupid, they are simply frightened and what they really need is understanding and support around starting the treatment, rather than be given nightmare scenarios about what will happen if they don't.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: RapidRod on March 08, 2010, 07:43:28 am
Quote
(by the way, aren't all infections 'opportunistic' in nature, whether one has HIV or not?).
NO..
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: veritas on March 08, 2010, 08:05:59 am

Chronic inflamation can raise havoc with the human body and persistent inflamation can attack healthy tissue even in the brain. As Tim so eloquently put it, chronic HIV infection for some reason produces this chronic inflamation as your body tries to fight the infection that is still detectable in your body. Fortunately , there are steps you can take right now to help quell this state of inflamation. See this:

http://eating.health.com/2008/02/21/anti-inflammatories-the-new-superfoods/

A lot of the steps in the aforementioned link are things you can do right now  with or without a detectable viral load.
Being informed should never be considered as scare tactics even if that knowledge is scary. Use the information to protect yourself.

v
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Miss Philicia on March 08, 2010, 08:44:19 am

People who postpone starting HAART are not stupid, they are simply frightened and what they really need is understanding and support around starting the treatment, rather than be given nightmare scenarios about what will happen if they don't.

Look, here's the deal -- your anxiety level about this is at such a high level that it's overpowering any logic about how excruciatingly crucial your own situation is (http://forums.poz.com/index.php?topic=31482.msg387044#msg387044).  A medical doctor doesn't have the time to deal with mental health issues.  Don't take this in an insulting way either.  That's what acute anxiety is.  You should have been addressing this particular issue before allowing your cd4s to drop to 84 six months ago.  I dare ask what your numbers are right now.

I'm also sure that previously you've stated you have a therapist.  How regular are your sessions and in what manner do you discuss this anxiety of commencing HAART?
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Jeff G on March 08, 2010, 09:16:09 am
I try to understand peoples fear of starting meds but the truth is I just cant after what I have seen .

I read what people have to say but my mind just goes back to seeing so many people I love struggle hard to live only to die because there were no treatment options . I remember one buddy who's family sacrificed the family fortune for anything that could help him live . Its not that I don't have compassion for peoples anxiety over starting meds , its my memory of the days when we would have crawled over broken glass for a glimmer of hope .   
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: buffaloboy on March 08, 2010, 10:27:03 am
Look, here's the deal -- your anxiety level about this is at such a high level that it's overpowering any logic about how excruciatingly crucial your own situation is.  A medical doctor doesn't have the time to deal with mental health issues.  Don't take this in an insulting way either.  That's what acute anxiety is.  You should have been addressing this particular issue before allowing your cd4s to drop to 84 six months ago.  I dare ask what your numbers are right now.

I was going to mention the attitude of fellow positive people in my earlier post, but decided against it.
However, I think now is a good time to say that I haven't always been terribly impressed. There are many people living with HIV who are brilliant and supportive but there are the handful whose tone is so shrill it negates what they are actually saying.

It reminds me of those out gay men who berate those for being in the closet, and have no understanding that we are not all the same, and what is relatively easy for some, can be like a climbing a mountain for others.

Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Miss Philicia on March 08, 2010, 10:32:03 am
Don't take this in an insulting way either.  That's what acute anxiety is.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: buffaloboy on March 08, 2010, 10:38:13 am
Don't take this in an insulting way either.  That's what acute anxiety is.

Yes, I noticed you inserted that so that you could then say whatever you wanted to.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: joemutt on March 08, 2010, 10:39:12 am
agreed

agree too. there are side effects and you can study them but none outweigh the consequences of harming your immune system by allowing uncontrolled growth of the virus. in my support group i see enormous fear about starting meds, and i really understand that it's confronting an unknown, but there is also a lot of relief once people start taking meds and they start doing better real quickly. i think it's really charitable of Moffie to tell what is really at stake.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: buffaloboy on March 08, 2010, 11:16:44 am
agree too. there are side effects and you can study them but none outweigh the consequences of harming your immune system by allowing uncontrolled growth of the virus. in my support group i see enormous fear about starting meds, and i really understand that it's confronting an unknown, but there is also a lot of relief once people start taking meds and they start doing better real quickly. i think it's really charitable of Moffie to tell what is really at stake.

I think that the key issue is how that fear can be addressed. After nearly 15 years since HIV treatment first became available there still seems to be a very high level of fear about taking these drugs amongst a small, but notable, minority. Regardless of what some may think, I would argue that it is the responsibilty of doctors to go over these concerns with their patients.  And if they are busy, then they jolly well need to make time to do so. Writing out a script and then leaving the patient to their own devices obviously doesn't work for some people.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Miss Philicia on March 08, 2010, 11:30:08 am
You're not going to find an Infectious Disease specialist offering one hour cognitive behavioral  counseling sessions to patients to address acute anxiety.  They should, however, refer you to a mental health professional for this.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Hellraiser on March 08, 2010, 11:31:43 am
I think that the key issue is how that fear can be addressed. After nearly 15 years since HIV treatment first became available there still seems to be a very high level of fear about taking these drugs amongst a small, but notable, minority. Regardless of what some may think, I would argue that it is the responsibilty of doctors to go over these concerns with their patients.  And if they are busy, then they jolly well need to make time to do so. Writing out a script and then leaving the patient to their own devices obviously doesn't work for some people.

I don't know about you, but my doctor told me everything to expect about my medication and then the next time I saw him asked if I had any severe or adverse side effects.  All of this is predicated on the fact that I was pushing to take the drug anyway because I wanted my immune system to function properly DESPITE any side effects that may have occurred.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: buffaloboy on March 08, 2010, 11:46:48 am
You're not going to find an Infectious Disease specialist offering one hour cognitive behavioral  counseling sessions to patients to address acute anxiety.  They should, however, refer you to a mental health professional for this.

Where did I say that I thought doctors should be offering 'CBT'? I think you'll find I made no such suggestion.

Doctors are the ones with the knowledge about treatment and side effects, and their management and therefore  it should be incumbent on them to take the time discuss this with any patient if necessary. I understand that the better doctors do this, but it's certainly not universal.

Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Joe K on March 08, 2010, 12:01:41 pm
I think that the key issue is how that fear can be addressed. After nearly 15 years since HIV treatment first became available there still seems to be a very high level of fear about taking these drugs amongst a small, but notable, minority. Regardless of what some may think, I would argue that it is the responsibilty of doctors to go over these concerns with their patients.  And if they are busy, then they jolly well need to make time to do so. Writing out a script and then leaving the patient to their own devices obviously doesn't work for some people.
I can empathize with your fears regarding starting treatment, and I agree that your doctor should listen to and respond to your concerns, however, what I don't agree with, is the idea that your doctor needs to hold your hand and calm all of your fears, whether warranted or not. You are assuming all the worst of what can happen and believe that someone must shield you from all unknowns regarding treatment and I just don't see that as being reasonable.

Any decent doctor will take the time to address your concerns, or should direct you to those who can. But as Miss P. noted, doctors are not our therapists and any concerns you have, that are outside your doctors ability to address, then become your issues that you must address. What I have noticed in your threads is that you seem to want to shift all responsibility, for your treatment, to others and seem to insinuate that the failings of others, is why you are so apprehensive about starting treatment. Nobody can tell you which side effects you may get, if you get any and most doctors do not have the time to discuss endless "what if" scenarios. Since you are considering treatment, you should already know about common side effects and the ways they can be addressed. This site has copious amounts of information regarding all facets of HIV treatment and I suggest you read the sections about any possible side effects that concern you.

No matter what you may believe, treating HIV is not a spectator sport. You can't sit on the sidelines and expect someone else to call the plays. You should consider your doctor, as your partner in treating your disease and for treatment to be successful, means that each partner must do their share.  Your doctor is providing the medical knowledge/experience in guiding your treatment, all the rest is up to you.

Finally, do not ever compare coming out of the closet with treating HIV. You can remain in the closet forever and it will not kill you. Not treating your HIV, however, most definitely will.

As an FYI, HIV drug treatments have been around, since the introduction of AZT in 1987.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: GSOgymrat on March 08, 2010, 12:27:16 pm
No matter what you may believe, treating HIV is not a spectator sport. You can't sit on the sidelines and expect someone else to call the plays. You should consider your doctor, as your partner in treating your disease and for treatment to be successful, means that each partner must do their share.  Your doctor is providing the medical knowledge/experience in guiding your treatment, all the rest is up to you.

Thanks for saying this. One thing I learned quickly after becoming HIV+ is that you have to take responsibility for your own healthcare. Question everything. Write things down. Do your own research. Even if you are in the hospital ask "What is this medication? Why do I need it?"

I understand why some people are afraid of taking medication but if you educate yourself and listen to other people who have similar experiences you will feel more empowered and less afraid of the unknown. Of course some people don't want to take medication because it make being HIV+ more "real" and less easy to ignore, which is a different issue.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: buffaloboy on March 08, 2010, 12:48:21 pm
I think some lateral thinking wouldn't go amiss here. As I've already said, after all this time of treatment being available there is still an awful lot of fear around HIV drugs. Why is that the case? What could be done so that people have a more optimistic view of HAART? We see in these very forums people with great anxiety about treatment, as the OP points out, and this will have a knock on effect to others reading up about the drugs.

And any patient with a dwindling CD4 count will probably have spent time with a doctor listening to all the gruesome things that are likely to happen to them if they don't start treatment, and yet still they postpone doing so. Perhaps, along with the doctors approach, there are other reasons for this, but I think if the goal is to get people on HAART before they are in the danger zone, it's patently obvious that something, somewhere along the line isn't working.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: buffaloboy on March 08, 2010, 12:56:09 pm
As an FYI, HIV drug treatments have been around, since the introduction of AZT in 1987.

The treatment offered to patients today are those based on the combinations which came about in the mid-90s - rather than the high dose monotherapy of AZT in the late 80s - which is why I stated an approximate 15 year time span.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Hellraiser on March 08, 2010, 12:57:48 pm
I think some lateral thinking wouldn't go amiss here. As I've already said, after all this time of treatment being available there is still an awful lot of fear around HIV drugs. Why is that the case? What could be done so that people have a more optimistic view of HAART? We see in these very forums people with great anxiety about treatment, as the OP points out, and this will have a knock on effect to others reading up about the drugs.

And any patient with a dwindling CD4 count will probably have spent time with a doctor listening to all the gruesome things that are likely to happen to them if they don't start treatment, and yet still they postpone doing so. Perhaps, along with the doctors approach, there are other reasons for this, but I think if the goal is to get people on HAART before they are in the danger zone, it's patently obvious that something, somewhere along the line isn't working.


I think you're extremely wrong.  People know what happens when they don't treat HIV and they go on HAART to prevent it.  All the daydreaming in the world about what the possible side effects will be isn't going to stop anyone from saving their own life.

Let's think about this in the black and white for a moment.  Will one pill of HAART kill you? No. Will 0 pills of HAART kill you? YES!

So if you're worried about HAART I think what you should be focusing on is the effects of maintaining a low CD4 count and a high viral load.  Sure, question the medicine, but don't get tied in knots over what might happen.  This is not a difficult decision.  If you want to change your regimen do so, but you have HIV and unfortunately this means you're going to have to take pills to allow you to function normally and lead a full life.  These pills do have side effects but they are not so drastic as to be more dangerous than the disease itself.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: pozniceguy on March 08, 2010, 12:59:34 pm
without repeating what has already been said and restated many times here ..without the advanced treatments  I have received  I would surely be dead.  After the first round of PCP combined with MAC in Hospital  the Dr's  told the family to make final arrangements..... I wouldn't last the weekend.....   well my current ID  Dr joined the staff at the invite of my regular Dr  and immediately suggested starting what was considered "radical treatment" at the time.    now considered the normal treatment.... here I am 15 yrs later  still alive and doing pretty well...      no questions in my mind about the value of the treatment....   with or without the "side effects"


Nick
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Tim Horn on March 08, 2010, 01:19:36 pm
People know what happens when they don't treat HIV and they go on HAART to prevent it.

Actually, I disagree with this -- hence the need for Moffie's original post and the dialog that has ensued in its wake. I don't know if many people living with, or at risk for, HIV really "know what happens" if the virus is goes untreated. The way I see it, AIDS and its sequalae is very much a bogeyman in this day and age... the stuff of legends. Many have heard about it, but haven't seen it or experienced it with their own eyes. Preventing and treating a disease that generally doesn't make people sick, but can eventually lead to serious illness, is often too abstract of a concept for some people to grasp. Then when you factor in treatment side effects, which are much more likely to be a reality than the modern-day threat of AIDS-related OIs, a shift in people's thinking is almost natural. This, of course, brings us to the importance of threads such as this.

Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Joe K on March 08, 2010, 01:37:59 pm
I think some lateral thinking wouldn't go amiss here. As I've already said, after all this time of treatment being available there is still an awful lot of fear around HIV drugs. Why is that the case? What could be done so that people have a more optimistic view of HAART? We see in these very forums people with great anxiety about treatment, as the OP points out, and this will have a knock on effect to others reading up about the drugs.

And any patient with a dwindling CD4 count will probably have spent time with a doctor listening to all the gruesome things that are likely to happen to them if they don't start treatment, and yet still they postpone doing so. Perhaps, along with the doctors approach, there are other reasons for this, but I think if the goal is to get people on HAART before they are in the danger zone, it's patently obvious that something, somewhere along the line isn't working.

What exactly do you propose be done? Provide a HIV companion, to be given to everyone who tests poz, to hold their hand? I mean really, what do you propose? Given the resources that are available today, exactly what MORE can be done, to make people realize that HIV, if left untreated will kill you and that treating it can sometimes be a real bitch. Or not. The fact remains that HIV, if given the chance will kill you and since few people today, have seen what us dinosaurs witnessed, it is our moral duty, in remembrance, that compels us to continually focus on treating HIV, by reminding you of what happens when you don't treat.

Do you have any idea how many times I have said those words, over 26 years of being poz? I'm tired of prodding folks to do what is best for them, even when it scares them. But then, like clockwork, each year, I lose someone else to HIV. 320 to date and still counting... the last being far too close to home. Yet, I still see their faces and I know they would have gladly gone to hell and back, for but a taste of the treatments today. And when I see those faces, I am reminded of our shared duty to inform and educate, because we are sharing our experience.

I can understand the fears that may come from starting treatment, however, those fears must be faced and conquered, because you need the treatment to LIVE. Sad as it is, for must of us, it really is that simple.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: buffaloboy on March 08, 2010, 01:40:35 pm
Actually, I disagree with this -- hence the need for Moffie's original post and the dialog that has ensued in its wake. I don't know if many people living with, or at risk for, HIV really "know what happens" if the virus is goes untreated. The way I see it, AIDS and its sequalae is very much a bogeyman in this day and age... the stuff of legends. Many have heard about it, but haven't seen it or experienced it with their own eyes. Preventing and treating a disease that generally doesn't make people sick, but can eventually lead to serious illness, is often too abstract of a concept for some people to grasp. Then when you factor in treatment side effects, which are much more likely to be a reality than the modern-day threat of AIDS-related OIs, a shift in people's thinking is almost natural. This, of course, brings us to the importance of threads such as this.

This is an insightful post.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: David_CA on March 08, 2010, 02:07:44 pm
I think the one of the parts that bothers me the most is with guidelines such as 'a CD4 under 350', etc for starting HAART.  I don't have the exact numbers, but my CD4's were just a bit under 300 when I was hospitalized with PCP back in '06.  I want to say they were around 275 when labs were done while I was in the hospital, but I don't have the print-outs with those results.  The OI's really can sneak up on anybody.

According to what I've read, I should not have had PCP; my numbers weren't low enough.  I was in good shape; I exercised regularly (until I got too weak), ate decently, cut way back on my alcohol consumption, etc... all the non-drug things I could do to stay healthy.  Perhaps there was a touch of denial at play.  I'd only been diagnosed 9 months earlier; I shouldn't be sick or actually have AIDS!  I'd planned on starting meds in December.  I just didn't plan on starting them in the hospital with an IV with multiple bags and pumps, telemetry monitoring, an O2 cannula, oral meds, etc.  I'd gradually been feeling bad for well over a month, but I figured it was anxiety, depression, and the HIV itself.  I'd lost 20+lbs during that time, too.  I looked damned good with the weight loss, but was so weak that I'd have to rest after walking from our house or my office to my car before I was able to drive anywhere.  A couple of days before being admitted, I couldn't even eat Thanksgiving dinner at my mom's.  That's what clued me in that I needed to see my Dr.  I had a fairly severe case of PCP and was hospitalized within two hours of seeing my ID Dr.

For those who are waiting to delay the side effects of HAART, don't forget about the 'side effects' of HIV - really nasty killer OI's and an AIDS diagnosis.  The word AIDS doesn't bother me all that much, but PCP pneumonia almost killed me.  Delaying potential med side effects for 6 months to a year when one's going to be on meds for life while risking killing OI's just doesn't make sense to me.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Ravhyn on March 08, 2010, 03:48:14 pm
Personally myself I can't wait to start treatment.  3 weeks needs to hurry up and get over. I'm more worried about NOT taking the medicine then what the meds will do to me. Meds are the lesser evil.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Hellraiser on March 08, 2010, 04:03:47 pm
Personally myself I can't wait to start treatment.  3 weeks needs to hurry up and get over. I'm more worried about NOT taking the medicine then what the meds will do to me. Meds are the lesser evil.

Heh that's exactly how I felt.  I had to wait for a month and some change to actually start and my numbers were so bad I was worrying my head off.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: griezzel on March 08, 2010, 04:06:39 pm
Look, here's the deal -- your anxiety level about this is at such a high level that it's overpowering any logic about how excruciatingly crucial your own situation is (http://forums.poz.com/index.php?topic=31482.msg387044#msg387044).  A medical doctor doesn't have the time to deal with mental health issues.  Don't take this in an insulting way either.  That's what acute anxiety is.  You should have been addressing this particular issue before allowing your cd4s to drop to 84 six months ago.  I dare ask what your numbers are right now.

I'm also sure that previously you've stated you have a therapist.  How regular are your sessions and in what manner do you discuss this anxiety of commencing HAART?

Wow. Don't be insulted, but how offensive and condescending are posters allowed to be here?
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Hellraiser on March 08, 2010, 04:09:21 pm
Wow. Don't be insulted, but how offensive and condescending are posters allowed to be here?

That's not even remotely offensive.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: griezzel on March 08, 2010, 04:10:40 pm
That's not even remotely offensive.

No, of course you wouldn't think so.  ::)

On the face of it, Prissy's post makes perfect sense. But it's what he's replying to that makes it objectionable.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Miss Philicia on March 08, 2010, 04:11:55 pm
Oh good lord.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Matty the Damned on March 08, 2010, 04:24:10 pm
Wow. Don't be insulted, but how offensive and condescending are posters allowed to be here?

Depends on how thin-skinned and offended those responding allow themselves to be.

MtD
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Joe K on March 08, 2010, 04:30:01 pm
Wow. Don't be insulted, but how offensive and condescending are posters allowed to be here?
The only one being offensive and condescending is you, by suggesting that you are the arbitrator of how to respond to a thread. The post was on point and relevant. Your comment about Miss P's post, however was nothing short of a cheap shot.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: buffaloboy on March 08, 2010, 04:32:07 pm
No, of course you wouldn't think so.  ::)

On the face of it, Prissy's post makes perfect sense. But it's what he's replying to that makes it objectionable.

Indeed it is.

But Miss Philicia tends to behave rather like a member of a cult when it comes to HIV, so if your views happen to be discordant with her own, she feels it's her duty to patronise you.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Hellraiser on March 08, 2010, 04:33:36 pm
*facepalm*
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Moffie65 on March 08, 2010, 04:35:24 pm
Wow. Don't be insulted, but how offensive and condescending are posters allowed to be here?

Griezzel,

Why do you think some of us dinosaurs stay with this site, and post threads like this one and the one about “HIV infection” from Killfoile?  Seriously, why?

I'll tell you, since you think that posting clear information and often personal opinion about HIV/AIDS is both offensive and condescending.  When we see people who are on here and dabbling with "fear" of treatment, and "fear" about everything connected to HIV, we respond.  I thought about this subject and thread, ever since we recently had some visitation from an HIV/AIDS "denial" site, elsewhere on the web.  Unfortunately, some of you who have been very fearful of the treatment, yet not terribly fearful of the reality of untreated HIV compound the confusion.  We could just as easily go about our daily business and struggles in life without even allowing any of your feelings about HIV treatment and fight bother us, but we don’t, we come day after day, and read of people facing the “wall of HAART” like it was an insurmountable wall of misery.  

New people here answer posts from other new people, (less than two or three years) and often times the information you all exchange is not only false, but grounded on no scientific research, or personal witness to years of experience with this bug.  I would never try to negate such posts, so in the constant struggle here on line for civility; most of us tuck our fingers and just don’t bother to ruffle feathers.  To find that this OP has caused any distress on an HIV/AIDS support site, to me is astounding.  I cannot believe that in this day of “Too Much Information”, people would not only welcome educational posts such as this, but encourage as much participation of those who can speak personally about their experiences and their struggles with therapy.

Lastly, we talk rather glibly currently in this forum about OIs, but if you have bothered to read this thread VERY carefully, you will find that many of us have lost friends and acquaintances to them very recently.  They are still happening, and still happening to people who have been on HAART for some time.  Unfortunately, the reality that treatment failure, resistance and other physical issues can still very much happen is still very much a part of all our lives.

I encourage you to join in the learning and please try to stop being so critical about the reality of HIV/AIDS.  It will only prove to help you in the future.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Joe K on March 08, 2010, 04:36:18 pm
Indeed it is.

But Miss Philicia tends to behave rather like a member of a cult when it comes to HIV, so if your views happen to be discordant with her own, she feels it's her duty to patronise you.


*double facepalm*, when words can never adequately express, just how stupid what you just did was.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Miss Philicia on March 08, 2010, 04:39:38 pm

On the face of it, Prissy's post makes perfect sense. But it's what he's replying to that makes it objectionable.

Just quoting the objectionable name calling here so that it can't be edited.  Thanks.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: David_CA on March 08, 2010, 04:46:51 pm
I'm curious as to what the two dissidents of this thread would like to read.  Perhaps a new thread can be started telling why people don't want to start HAART.  Honestly, several people have posted that they wanted to start meds.  Others, like me, have posted how we're alive because we started.  I like to think of quitting cigarette smoking.  A Dr. can tell one repeatedly that he needs to stop.  Ultimately, it's up to the individual.  Criticizing those who state such (that it's the individual's responsibility) is pointless.  If I'm genuinely afraid of meds or of some other life-saving measure, I know that if I post here and ASK for information, support, hand-holding, whatever that I'd receive it.  I'd have to ask, though.

[edited to add the following]
I probably should say that members here typically have good memories of other member's posts.  I've seen such posts come back to haunt members when they genuinely need help here; they received minimal support.  There are ways to respectfully disagree without being dismissive, insulting, or rude.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: BT65 on March 08, 2010, 04:55:35 pm
Indeed it is.

But Miss Philicia tends to behave rather like a member of a cult when it comes to HIV, so if your views happen to be discordant with her own, she feels it's her duty to patronise you.

Can't think of anything productive to say, aye?
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Joe K on March 08, 2010, 04:58:14 pm
Maybe I am splitting hairs, but I do not agree with calling anyone, who disagrees with any post, a dissident or denialist, because both of those words are too emotionally charged and a red flag for this site. I want to remind everyone that we are each entitled to our beliefs and opinions and as such, we are all worthy of respect. That being said, there are constructive ways to disagree that will draw the other posters, whereas insulting members, who are trying to be helpful, is of no use to anyone.

Let me remind everyone here, who the real enemy is... HIV.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: buffaloboy on March 08, 2010, 05:01:18 pm
Can't think of anything productive to say, aye?

It's a valid comment in light of some of Miss Philicia's responses.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: David_CA on March 08, 2010, 05:02:47 pm
Maybe I am splitting hairs, but I do not agree with calling anyone, who disagrees with any post, a dissident or denialist, because both of those words are too emotionally charged and a red flag for this site. I want to remind everyone that we are each entitled to our beliefs and opinions and as such, we are all worthy of respect. That being said, there are constructive ways to disagree that will draw the other posters, whereas insulting members, who are trying to be helpful, is of no use to anyone.

Let me remind everyone here, who the real enemy is... HIV.

It's ok to split hairs and to disagree, but the definition of dissident I'm going by is 'disagreeing or dissenting, as in opinion or attitude'... especially when one considers that there were only two who were disagreeing with pretty much everybody else.  But hey, you disagreed in a respectful fashion, so it's cool.   ;)
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: skeebo1969 on March 08, 2010, 05:20:10 pm


   I think some forget that there are those of us here who have went through the very same fear of the meds they are currently having, it's nothing new.  Most of us have faced it and found there was only one way to truly get over it.... and that's to jump when the plane reaches altitude.   It's also hard to get someone to fully understand your fear of taking one pill when they themselves have ventured through the days of having to pop handfulls of pills daily.  

It may just be one of those tough love scenarios me thinks...

   The sad truth is you are going to have to conquer this fear eventually, and it doesn't matter what tone of advice someone used to tell you this.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: buffaloboy on March 08, 2010, 05:21:15 pm
I'm not a regular visitor to the forums and thus don't post regularly, but I did recommend this site to someone I was chatting to online today, who was diagnosed a week ago. But after seeing how this thread has gone, I rather wish I hadn't bothered.

I always thought this was a space for a range of views, rather than what seems to be happening here, which is if you have the audacity to express a different opinion you get shouted down and patronised.

To be absolutely clear, I wasn't suggesting in any way, that people should postpone taking medication but,  rather, trying to drill down and think about and understand all the reasons why this is sometimes the case - not just in my own experience but other peoples too.

Initially, this thread had the potential to influence some of the drug-shy positive people out there, but having degenerated in the manner that it has, I highly doubt that anyone with a low CD4 count reading this will feel encouraged or inspired to start treatment any time soon.

Great work, folks.

Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Matty the Damned on March 08, 2010, 05:24:08 pm
I'm not a regular visitor to the forums and thus don't post regularly, but I did recommend this site to someone I was chatting to online today, who was diagnosed a week ago. But after seeing how this thread has gone, I rather wish I hadn't bothered.

I always thought this was a space for a range of views, rather than what seems to be happening here, which is if you have the audacity to express a different opinion you get shouted down and patronised.

To be absolutely clear, I wasn't suggesting in any way, that people should postpone taking medication but,  rather, trying to drill down and think about and understand all the reasons why this is sometimes the case - not just in my own experience but other peoples too.

Initially, this thread had the potential to influence some of the drug-shy positive people out there, but having degenerated in the manner that it has, I highly doubt that anyone with a low CD4 count reading this will feel encouraged or inspired to start treatment any time soon.

Great work, folks.



Look Kiddo,

If people are going to make life and death medical decisions based solely on what they read in some thread on some internet message board, they've got much bigger problems than HIV.

I mean really, let's get things into perspective here.

MtD
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: griezzel on March 08, 2010, 05:26:43 pm
The sad truth is you are going to have to conquer this fear eventually, and it doesn't matter what tone of advice someone used to tell you this.

Agree with the first part of the statement but not the second. I think it matters a great deal. Obviously, many here agree with you completely.

Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Moffie65 on March 08, 2010, 05:27:45 pm
I'm not a regular visitor to the forums and thus don't post regularly, but I did recommend this site to someone I was chatting to online today, who was diagnosed a week ago. But after seeing how this thread has gone, I rather wish I hadn't bothered.

having degenerated in the manner that it has, I highly doubt that anyone with a low CD4 count reading this will feel encouraged or inspired to start treatment any time soon.
Great work, folks.

How dare you negate the very essence of an HIV/AIDS diagnosis.  My God man, DEATH IS THE OTHER OPTION, AND YOUR DECLARATIONS DO NOTHING TO HELP GET THIS POINT ACROSS.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: buffaloboy on March 08, 2010, 05:31:50 pm
Look Kiddo,

If people are going to make life and death medical decisions based solely on what they read in some thread on some internet message board, they've got much bigger problems than HIV.

I mean really, let's get things into perspective here.

MtD
But the issue at hand is HIV and, for better or worse, people use this site for advice and guidance all the time.

OK, Sunshine?
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: buffaloboy on March 08, 2010, 05:34:51 pm
How dare you negate the very essence of an HIV/AIDS diagnosis

And your evidence for this is what precisely?
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: skeebo1969 on March 08, 2010, 05:38:04 pm
Agree with the first part of the statement but not the second. I think it matters a great deal. Obviously, many here agree with you completely.



You are just hearing it from someone that got told in the very same manner 4 years ago.  Truth is no one here has any magical advice to get over that fear... plain and simple.  We can tell you what that bump on your dick might be, but fuck dude we can't get that other part figured out yet. lol
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Joe K on March 08, 2010, 05:38:54 pm
David, I realize that the use of the word is correct, I am merely suggesting that the particular term "dissident" is really tainted on this forum and it may cast a poster in an "assumed" negative light. Given the power of the terms, I just think it is best that we avoid them unless used in their most extreme context.

Buffaloboy and Griezzel, while I understand your point about the tone of some posts, I disagree that just because a post is forceful, that it is not effective. The whole point of these forums are for us to share our experience with HIV and to hopefully help the newly infected, to have an easier time than we did. HIV is damn scary, as it should be and sometimes you have to react differently, for some posters, for your point to sink in. What you will not find however, is anyone denigrating or insulting a poster, because of the opinions they hold. Can you say, that you are giving all the posters here the same courtesy?

As I have mentioned to other posters, if you have your questions or concerns, please ask and we will try and answer. When you come into a forum, such as this, I ask that you be considerate of the great courage and pain that resides here. We strive to treat everyone as equal and sometimes things get heated, but rarely do they turn mean. If you have constructive criticism, then please share, but please do not assume that you know the ONLY way to reach the newly infected.

We do this for you.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Joe K on March 08, 2010, 05:43:00 pm
But the issue at hand is HIV and, for better or worse, people use this site for advice and guidance all the time.

OK, Sunshine?

What exactly is your problem? People are trying to be decent here and all you can do is insult. I don't know what you think you KNOW about HIV, but my guess is squat. Further more, while I might like to share your opinions, I am afraid, there is simply not enough room, up your ass, for both of our heads  ;D
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: griezzel on March 08, 2010, 05:55:19 pm
i'm sorry, but...
where is the insult????
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: griezzel on March 08, 2010, 06:05:57 pm
..since you think that posting clear information and often personal opinion about HIV/AIDS is both offensive and condescending.
But I don't! <sigh>

Quote
Unfortunately, some of you who have been very fearful of the treatment, yet not terribly fearful of the reality of untreated HIV compound the confusion.

But, you see, you're forgetting that "we" are not a few. Fear of drugs is very common. Dealing with that fear in people is really more just plain, basic everyday psychology, not necessarily a mental health issue. And you are also making an assumption that everyone these days facing the decision of when to start med therapy is unaware of the consequences of a weakened/damaged immune system and subsequent OI's.

It seems then that the regulars here are in battle mode and need to take a little care who they are attacking and why.

This will be my final post. Since people now seem determined to perpetuate misunderstandings in a most disagreeable manner, I will respectfully withdraw. Have said all I need to. <yikes!>

Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: buffaloboy on March 08, 2010, 06:28:51 pm
What exactly is your problem? People are trying to be decent here and all you can do is insult. I don't know what you think you KNOW about HIV, but my guess is squat. Further more, while I might like to share your opinions, I am afraid, there is simply not enough room, up your ass, for both of our heads  ;D

I'm not the one doing the insulting. Take a look in the mirror.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: RapidRod on March 08, 2010, 06:31:24 pm
But I don't! <sigh>

But, you see, you're forgetting that "we" are not a few. Fear of drugs is very common. Dealing with that fear in people is really more just plain, basic everyday psychology, not necessarily a mental health issue. And you are also making an assumption that everyone these days facing the decision of when to start med therapy is unaware of the consequences of a weakened/damaged immune system and subsequent OI's.

It seems then that the regulars here are in battle mode and need to take a little care who they are attacking and why.

This will be my final post. Since people now seem determined to perpetuate misunderstandings in a most disagreeable manner, I will respectfully withdraw. Have said all I need to. <yikes!>


Being uneducated is one thing, but to ignore the facts is a totally different game.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Tim Horn on March 08, 2010, 06:47:08 pm
Hi Guys (and Gals)...

Listen, it seems as if everyone's getting a little steamed. While that's certainly understandable, I'd hate for this thread to be shut down if things get out of hand. So let's keep the conversation thoughtful and considerate. Name calling and barbs are beneath everyone here -- so please take a couple deep breaths before posting.

Thanks all,

Tim
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Moffie65 on March 08, 2010, 07:03:45 pm
Thanks Tim,

I am really enjoying this thread, and I do understand that everyone has a voice and needs to be heard.  I do wish that we can keep this discussion going to its conclusion based not on arguements, but based on the truth and reality of the challenges that face all of us in the victory over this virus.  I want to make sure that those that are troubled about HAART, and living a victorious life with HIV, understand that it is a constant for life; or at least until science claims victory over viral infections.

Some have been uncomfortable with some of the flippant answers and comments from some of the membership, but in reality, when talking about the life and death disease we are all living with, it really doesn't matter just how someone chats here, only the truth of their message.  Please folks, this is too important a discussion to end up being one of "reports to the mods".  We just don't need that.  

Finally, some of us are just a bit tired of the constant need to remind people that this is truly a deadly disease, so sometimes we are not as patient as we should, and if that includes me, I apologise.


P.S.  For those who know and love her; Lis sends her love, and support.  :)
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Assurbanipal on March 08, 2010, 07:59:56 pm
It's important to remind people of the deadly consequences of untreated HAART. 

But it is not enough.

Because it is not just a matter of getting people to say they will start the meds sometime.  There needs to be a way to persuade them to start when it is medically advised instead of waiting for the first sign of an OI.

And the forums, as a place where people come when they have problems, tend to make people nervous about starting meds.  Because people with side effects are actively asking questions about how to deal with them, while those without are usually silent about their blessings, people reading the forums without any experience of the drugs vastly overrate both the number who develop side effects and the difficulty of dealing with side effects when they do arise.

All right, I know for many of you this is preaching to the choir.  But it is leading up to a suggestion.

I was impressed by Risred's diary of starting meds.  I've sent people to that diary as an example of how manageable the process can be for someone starting (not to minimize in any way your experience Risred -- just that it is very helpful).  But it keeps falling further and further down the threads...

What if we, as a group, were to ask each person who announces that they are going to start meds to have a similar day by day diary.  Sure there would be some people who had bad experiences starting up that the fearful could point to.  But those stories get posted anyway as people ask for advice.  And we would have an archive of success stories to point people to (and ask them to add to) as they reach the time when they are advised to start treatment.

And because they are day by day, they could provide an immediate, compelling and persuasive set of stories.

Organizationally, there needs to be some way to find these stories., whether a separate forum or some naming convention.  But an archive of people's immediate recent experience of starting meds might
go a long ways to quelling the (irrational) fear of potential side effects.

A
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: WillyWump on March 08, 2010, 08:24:54 pm
Moffie,

Great post and I would like to share my experience with HIv treated with HAART and HIV left untreated.

I couldnt wait to start meds. I couldnt stand going to sleep every night knowing that the virus was having it's way with my body. I was starting to get very fatigued, my numbers were tanking so I knew it was time. I knew of the possible side effects but I enthusiastically embraced starting, because I knew the side effects outweighed the alternative..slowly giving up my body to HIV. I started the meds, had a a few annoying side effects in the beginning but these went away but these eventually faded away. Today I am happy to report I am side effect free. The meds are a non-issue in my day to day life. I dont think I am all that unusual in my experience, I believe the majority of people do not have any severe or crippiling side effects on meds. Yes, at this moment you can probably point to a hundred or so posts regarding severe side effects in these forums. But for every person who reports bad side effects here there may be hundrededs or thousands of people who have no side effects and do not post, or are not members of these Forums.

Regarding Untreated HIv. I lived it, or rather was an observer, to what can happen. My dear friend Scott had HIV. He did not take meds,  we are not sure of the exact reason, but nevertheless he never took 1 HAART pill, ever. He looked good and he felt good for years. Then suddenly one morning he woke up very sick, couldnt stand, couldnt eat, vomitting. He went to the hospital. They kept him for a week. The discovered he had cancer in the liver, pancreas, lungs, bones and his brain. Terminal diagnosis. Apparently he had had the cancer for several years (the whole time feeling great) and it had spread throughout his body. The doctors were sure it was AIDS related. They told him he had 6 weeks, gave him info on hospice and sent him on his way, he asked to start meds, they told him it was too late, the meds would have no effect on his terminal diagnosis. Scott made the rounds and said goodbye to his friends. Two weeks later he became bed ridden, a few days later he went blind.  There he lay in his bed, shitting himself, blind, babbling incoherently and crying. Thank the Lord he didnt linger much longer, he slipped into a coma and died a few days later. Before he slipped into senility he told us he would give anything to turn back the clock and start HAART years ago when his doctor recommended. Scott was 34. Scott had HIV. Scott did not take HAART, and when he decided too it was to late.

I'm of the belief that if Scott had started meds when he should have, the cancer would not have appeared or wouldn't have been allowed to spread like wildfire throughout his body.

So for me, the "potential" for scary side effects did not make me hesitate for one second when faced with starting meds. Because I looked into the face of untreated HIV and it can best be described as Hell right here on Earth.

Call the above a scare tactic, call it what you wish. I call the act of starting HAART self preservation, side affects or not.

-Will
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: tednlou2 on March 09, 2010, 12:08:20 am
Actually, I disagree with this -- hence the need for Moffie's original post and the dialog that has ensued in its wake. I don't know if many people living with, or at risk for, HIV really "know what happens" if the virus is goes untreated. The way I see it, AIDS and its sequalae is very much a bogeyman in this day and age... the stuff of legends. Many have heard about it, but haven't seen it or experienced it with their own eyes. Preventing and treating a disease that generally doesn't make people sick, but can eventually lead to serious illness, is often too abstract of a concept for some people to grasp. Then when you factor in treatment side effects, which are much more likely to be a reality than the modern-day threat of AIDS-related OIs, a shift in people's thinking is almost natural. This, of course, brings us to the importance of threads such as this.



Well said.

Are we arguing letting HIV go untreated while CD4's are dropping to dangerous levels?  Or, whether everyone with a detectable vl should be on meds?  If I were down to dangerous levels, I would not fear meds.  I'm getting to the point where I don't fear them so much anyway and thinking of starting sooner than later.  It is a huge decision, at least for me, whether to start at my numbers.  Different studies will tell you different things.  Many of the ones I've read have said starting by CD4 500 gives a person a great prognosis.  Then, we read about that unseen damage.  As I've said before, I've had some docs say start and others say no need to start yet.  Dr. Gallant told me a vl near 30,000 is not good.  Others say they don't worry until it gets over 50k and definitely over 100k.  I'm starting to lean toward Dr. Gallant's thinking.

From the original OP's question, is everyone talking about people letting CD4's drop to very dangerous levels and no meds or anyone with HIV and no meds?  
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: buffaloboy on March 09, 2010, 10:06:07 am
I think something that is being overlooked is that people don't always do what they should do. Take unprotected sex - pretty much everyone knows that they should always use a condom and yet some people decide not to and then go on to become infected with HIV. Indeed, it's that sort of behaviour which will have brought many people to this site and, possibly even, to this thread, as both authors and readers.

Perhaps it's just part of the human psyche to take risks and not heed well intentioned advice, and maybe all of our lives would have taken a different path if we'd done the things we should have done. But if anything is going to change, we need to approach it from the perspective of how (some) people actually think and behave, rather than how we would like them to.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Hellraiser on March 09, 2010, 10:08:44 am
I think something that is being overlooked is that people don't always do what they should do. Take unprotected sex - pretty much everyone knows that they should always use a condom and yet some people decide not to and then go on to become infected with HIV. Indeed, it's that sort of behaviour which will have brought many people to this site and, possibly even, to this thread, as both authors and readers.

Perhaps it's just part of the human psyche to take risks and not heed well intentioned advice, and maybe all of our lives would have taken a different path if we'd done the things we should have done. But if anything is going to change, we need to approach it from the perspective of how (some) people actually think and behave, rather than how we would like them to.

Every time I read your responses it's like you've only read the portions of replies that in some way may validate or agree with what you want to hear.  I'm done with this.  I hope you live a long and healthy life, but if you continue to go without meds for whatever reason I suggest you familiarize yourself with Tim's original list of OIs so that when they start to come on you can tell your doctor which ones you have.  Over this thread.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Moffie65 on March 09, 2010, 10:22:36 am
Will,
Read your story last night before I went to bed, with the promise I would answer this morning.  I am truly grateful that you shared your story, including all the emotion and message.  These recounts that many of you have left in this thread are true gems, and remind us, even today with all the advancements, that this disease is still very much an unknown in so many ways.  Thanks for sharing, and now I can wipe the tears off my keyboard. 

Tednlou, 
If you go to the lessons, and read about each one of the diseases, you will find that many can and do occur with CD4s that are higher than once thought.  When to start medications is certainly a personal choice, because all of our bodies are different, all of our immune systems are a result of our lives to this point and all the things we have been exposed to.  For example, I have had malaria, cerebral malaria, hepatitis, sun poisoning, shistosomiasis, (sp?) and many tropical diseases that are not common in the U.S. environment.  This has confused many of the doctors I have dealt with, and some say I have a strong immune system, while others say just the opposite. 

In the end, doctors only know about the effects of HIV/AIDS from their experience, or books.  The science is relatively new, so many of them say things with a certain certitude, but in the end, you will learn a whole lot more here about therapy, OIs and the truth about living with HIV/AIDS far more than reliance on one doctor to give you all the answers.  I know we must trust our doctors, but you know for sure, doctors are only human and my not be the “end all” of accurate and timely information.  Study this site, and then weigh all the facts, and then make up your mind.

Buffalo,
I agree, and having been in prevention education for the last 25 years; I can tell you that many people will only do what they are going to do, even though they have all the information.  However, we must never take this as a reason to give up and not keep telling people about the reality of an HIV infection, and what that really entails.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: buffaloboy on March 09, 2010, 10:25:08 am
Every time I read your responses it's like you've only read the portions of replies that in some way may validate or agree with what you want to hear.  I'm done with this.  I hope you live a long and healthy life, but if you continue to go without meds for whatever reason I suggest you familiarize yourself with Tim's original list of OIs so that when they start to come on you can tell your doctor which ones you have.  Over this thread.

This completely misses the point.

Oh well.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: skeebo1969 on March 09, 2010, 10:27:23 am
Every time I read your responses it's like you've only read the portions of replies that in some way may validate or agree with what you want to hear.  I'm done with this.  I hope you live a long and healthy life, but if you continue to go without meds for whatever reason I suggest you familiarize yourself with Tim's original list of OIs so that when they start to come on you can tell your doctor which ones you have.  Over this thread.

 ???

Someone needs a huggy wuggy!
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Joe K on March 09, 2010, 11:33:18 am
I think something that is being overlooked is that people don't always do what they should do. Take unprotected sex - pretty much everyone knows that they should always use a condom and yet some people decide not to and then go on to become infected with HIV. Indeed, it's that sort of behaviour which will have brought many people to this site and, possibly even, to this thread, as both authors and readers.

Perhaps it's just part of the human psyche to take risks and not heed well intentioned advice, and maybe all of our lives would have taken a different path if we'd done the things we should have done. But if anything is going to change, we need to approach it from the perspective of how (some) people actually think and behave, rather than how we would like them to.

I understand what you are saying, but how do you propose that we change how people think? You also make some very poor assumptions, the most glaring being "pretty much everyone knows that they should always us a condom". Sadly far too many people do not know good HIV/STD prevention skills, because, at least in the States, the prevention messages have been ineffective and sexual education is so dysfunctional after eight years of "abstinence only education". This does not mean that we should stop trying to educate people about HIV, but given the very limited budgets for prevention work, we generally have to use what works for "most" people, to stretch those prevention dollars as far as they will go.

Over the years, a lot of thought has gone into prevention messages and how to present the information to the public. When I visited London, I was really impressed by their STD information racks, which held about 30 or so, small leaflets, covering a range of topics, from prevention to treating HIV. They were in many of the bars and very accessible. How effective they have been, I cannot comment on, however, at least they were accessible for the people who needed such information. That's just an example of how to present information, but even those racks must be paid for and serviced by someone, if they are to remain effective. All of that takes money, usually a lot of it and budgets everywhere are stretched to the breaking point.

When you consider, that successful prevention consists of an effective message, a direct way to disseminate that information and people to keep the project going, you need organizations to run these programs, but they are also scrambling for funding, again due to limited funding for prevention work. Since funding is a real issue, the only programs that seem to be funded, are those that address the largest portion of the population possible, simply to get more bang for the buck.

We know that prevention messages are never enough, but you work with what you have. Fortunately, we have these forums, from which to share our lives and experience, as a form of prevention work. We know it is not perfect, or enough, but you work with what you have. So if some of us are frustrated at your comments, it is not that we disagree per se, it's just that we know there is a problem and you don't have to tell us that. What we all need... are solutions.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: buffaloboy on March 09, 2010, 12:38:59 pm
''I understand what you are saying, but how do you propose that we change how people think?''

By understanding what the issues are in the first place......

People who put off starting treatment often know that something horrendous will happen to their health and yet continue to remain off HIV drugs. So perhaps the focus needs to shift away from the various possible infections and their dire consequences, and on to side effect management.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: David_CA on March 09, 2010, 12:52:38 pm
''I understand what you are saying, but how do you propose that we change how people think?''

By understanding what the issues are in the first place......

People who put off starting treatment often know that something horrendous will happen to their health and yet continue to remain off HIV drugs. So perhaps the focus needs to shift away from the various possible infections and their dire consequences, and on to side effect management.

In the meantime, there are people literally dying waiting for meds.  Like I've said before, nobody made me quit smoking but me.  I did not wait for a Dr. to patiently coax me into it.  I also did not wait until I was having permanent health issues from it.  I quit because I knew of the health risks associated with it.  I daresay that most of us here started HAART because we did not want to die from an AIDS OI.  We want to live.  I guess the question I'd ask you is do you want to live?  If so, in time, you will have to start HAART.  There is no further discussion needed.  

You have read of people's success stories (lack of side effects from meds, healthier due to lower viral loads and increased CD4's, absence of OI's, etc).  You have also read of the significantly fewer people who cannot tolerate particular regimens and those who have no options left and have died.  It makes me wonder if you have seen people die from untreated AIDS... more specifically, the numerous illnesses associated with it that Tim took the time to point out in his OP.  Personally, I'm fortunate enough to not have seen anybody close to me die this way, and I hope I never have to.  I also hope to spare my husband, family, friends, and myself from this, too.  That's why I started meds.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: buffaloboy on March 09, 2010, 01:10:23 pm
''In the meantime, there are people literally dying waiting for meds. ''

I'm not doubting that this is true, but why do you think this is relevant here?
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: David_CA on March 09, 2010, 01:34:34 pm
''In the meantime, there are people literally dying waiting for meds. ''

I'm not doubting that this is true, but why do you think this is relevant here?

It's relevant because you're wanting time, energy, and resources spent to convince* people who need to be on HAART that things are gonna be peachy.  In the meantime, people are dying waiting for those same drugs... people whose declining health has convinced them that they need to start meds.

* substitute any other word that you find more suitable
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: bear60 on March 09, 2010, 01:45:52 pm
David
You're so right.  There are threads here from people complaining that ADAP funding in SOUTH CAROLINA was so low that there was a waiting list for poeple waiting to get meds.  There had been some deaths among those waiting for meds.  I am not going to look up the thread.

b boy.....what most of here at AIDMEDS dont understand is why some people would put off treatment until its too late for them to regain a healthy immune system. I speak from knowledge as my former life partner (Paul....you can read his obituary in the Memorial forum) tried to treat his HIV with diet and holistic medicine.  He became ill and died after PCP and CMV and a bunch of infections.  Had he started treatment maybe he would have lived longer.. or long enough to reach the year of the COCKTAIL.  He missed the cocktail by only a few months in 1995.  He died just before the cocktail came out.  He was afraid of taking AZT.  My current partner (Kurt) did take the AZT at that time ( 1993 to 95) and he is still here to tell about it.
It hurts me to see people here actually commiting suicide by refusing to take meds.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: buffaloboy on March 09, 2010, 01:46:43 pm
In the meantime, people are dying waiting for those same drugs...

Which people? Where?
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: bear60 on March 09, 2010, 01:48:41 pm
In South Carolina b boy...

Well, here you go:  http://forums.poz.com/index.php?topic=31665.0


Oh...and a big THANK YOU to Moffie for starting this thread.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: blackwingbear on March 09, 2010, 01:50:00 pm
In the meantime, people are dying waiting for those same drugs...

Which people? Where?

I think bear60 answered that..
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: buffaloboy on March 09, 2010, 01:53:04 pm
In South Carolina b boy...

Government(s) should ensure that treatment is available for all who need and want it. That's a separate issue, though.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Moffie65 on March 09, 2010, 01:55:50 pm
People who put off starting treatment often know that something horrendous will happen to their health and yet continue to remain off HIV drugs. So perhaps the focus needs to shift away from the various possible infections and their dire consequences, and on to side effect management.
I guess for some of you, there is no hope.  The alternative is a mostly gruesome death, that not only affects you, but everyone you leave behind that have to pick up the pieces.

Buffalo, nobody is stating you must start or even take the medications, it is up to you.  However, if you make this choice without knowing the truth about HIV infection, then who is the fool?  My simple reason here is to teach that without meds, you will die.  Period.  Side effects from the drugs are not fatal and a mere inconvenience to a life with HIV.  Having to take drugs daily is to me a no-brainer, and it is sad that the United States, and countries all over the planet, don't have the political guts to supply HIV meds to all who need them.  That is the true meaning of "Chronic Manageable", and leaves out political attitudes.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: blackwingbear on March 09, 2010, 02:07:53 pm
Government(s) should ensure that treatment is available for all who need and want it. That's a separate issue, though.

Ah, another dreamer like myself.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Jeff G on March 09, 2010, 02:18:54 pm
Buffaloboy . I am sincere in hoping you get the physiological help you need to deal with your fear of taking the meds that will save your life .

Insisting every one zero in on your fear of side effects to control the conversation will not be very helpfull for you or anyone else .
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: tommyga on March 09, 2010, 02:27:45 pm
Hi Everyone,

I thought I would chime in on this one because the title immediatley caught my attention, and reading all of the posts have severly distracted me from my workday. lol. I was diagnosed around one year ago, and I had great numbers, until the end of last year when my VL spiked. I think it was a blip due to strep throat, but life has gotten a bit crazy since then and I haven't been giving HIV/myself the attention it/I deserves, my insurance dropped the healthcare system I was using, and I haven't gotten around to finding a new ID(NYC if anyone has any recommendations, I have United).

So in short, I need to get better at this. I know I should, and most all of your posts are fears that I have. The possibility of others having to pick up the pieces in the event of my untimely death, HIV going untreated causing more health issues, etc, etc. It is unfortunate, that this diagnosis simultaneously is asking me to grow up, become a healthcare/prescription drug expert, face my mortality, battle with my feelings over self - worth, all at the same time, and still try to make friends in a new city.

I'm certainly not asking for sympathy, or someone to say it's okay to do what I'm doing, or necessarily to be scared into calling my doc with every issue. I just wanted to say that I think this is an important thread, and I thank everyone for participating. I needed to read it. If I go into the doctor in two weeks, and they tell me I need meds, I'll start, as scary as it may be. I really don't feel like the idea of taking medication daily is harder to deal with than the initial diagnosis, and the physical and mental drain that has been.

Reading back over what I wrote I'm not sure I'm making much sense. I guess to sum up, I beleive in myself, and I think I should start doing more for myself, and making sure I'm still around to see the final Harry Potter movie, and Avatar 2(fingers crossed).

What I really get out of this is you can't ignore your diagnosis, and I've been doing that for three months. Needed this little wake-up call.

Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Miss Philicia on March 09, 2010, 02:33:25 pm

Reading back over what I wrote I'm not sure I'm making much sense. I guess to sum up, I beleive in myself, and I think I should start doing more for myself, and making sure I'm still around to see the final Harry Potter movie, and Avatar 2(fingers crossed).

What I really get out of this is you can't ignore your diagnosis, and I've been doing that for three months. Needed this little wake-up call.



meh, relax a little and don't beat yourself up -- your cd4 count was 764 five months ago so you have a bit of a buffer zone, even if your high viral load has caused you to lose another couple hundred since then.  Still not shoddy if it's 564 now, but yeah don't procrastinate too much longer.

ps: you neglected to mention Tron Legacy-3D coming in December :)
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Jeff G on March 09, 2010, 02:34:43 pm
Hi Tommy ... You have a great attitude and its encouraging that this topic has had a positive influence on you .
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: griezzel on March 09, 2010, 03:09:08 pm
I'm baaaack  :-*

Ok, point by point:

..without meds, you will die.  Period.  

With or without meds, EVERYONE dies. Some people happen to be OK with that, like it or not.

Quote from: Moffie65
I encourage you to join in the learning and please try to stop being so critical about the reality of HIV/AIDS

There no single "truth about HIV infection" about which people do not not know. Especially anyone who has made it to this forum. I've heard rumors that some younger people are dangerously misinformed, so can only conclude that it is that small group of idiots you are posting for. It is still a little unclear who is "debating the efficacy of" HAART and in what way.

Quote from: Moffie65
Side effects from the drugs are not fatal and a mere inconvenience to a life with HIV.

Not fatal? What a relief! But then, I don't think fear of death keeps anyone from starting meds. Usually, I believe, it's fear of side-effects that will have a significant negative effect on daily life. What a couple of us here are trying to say is that THIS is the problem that needs addressing. There are surely other reasons many people would post-pone starting ARVs, but it seems the most common reason, cited in many surveys.

Quote
A second major finding of the survey is that many are concerned about ARV side effects and, as a result, avoid or stop HIV treatment. Overall, 26 percent of the respondents reported that they had elected not to seek treatment because they believe that ARV therapy causes too many side effects, with responses from Europe (42 percent) and South Africa (29 percent) being most prevalent. What’s more, 34 percent of treatment-experienced survey respondents discontinued ARV therapy primarily because they believe it caused too many side effects.

Side effects that survey respondents are most worried about include lipodystrophy, lipoatrophy and other body-shape changes (58 percent of survey respondents); gut-related problems such as nausea and diarrhea (54 percent); fatigue or anemia (54 percent); and liver disease (54 percent).

Respondents in Latin America and North America voiced significantly more concern about many potential side effects than respondents from other regions, while African respondents voiced significantly less concern.

Female respondents in most regions, especially those in Europe, worried more than male respondents in their respective regions about bone loss and face or body shape changes.

“ATLIS results indicate there is still a strong need to educate HIV-positive patients and the world around them. The findings demand an increase in global HIV and AIDS literacy,” said José Zuniga, PhD, president and CEO of IAPAC. “It is critical that we empower HIV-positive patients to take an active part in the management of their disease by educating them on the importance of adhering to their treatment and teaching them about the innovations in treatment that could improve their overall quality of life.”
http://www.aidsmeds.com/articles/hiv_treatment_stigma_2211_15058.shtml

I am not saying there is not an ongoing need to educate people of the consequences of HIV and the many horrible things that will certainly happen to us eventually, that are all the more likely the weaker our immunes systems become. But there is an increasing need to educate people about the new drugs and try to ease their fears of the possible side-effects.

I'm speaking from personal experience here. I was concerned that the meds could have had a huge negative impact on my life. I already suffer from debilitating fatigue, relish every ounce of energy I can find and crave being clear-headed and alert. The thought of voluntarily causing myself to feel any worse than I already do was monumental. I am happy to report that, for me so far, after one week, the side-effects of Atripla are minimal and easily manageable.

Overcoming that intial hurdle was helped by reading here the accounts of many other people just starting Atripla. It was not affected by things like your OP. (That does not mean I do not appreciate your sharing, and as I said, I personally benefited from it.) But then, I did not need to be told those things.



Quote from: Moffie65
I encourage you to join in the learning and please try to stop being so critical about the reality of HIV/AIDS

I meant to only offer my opinion about how best to approach convincing a large number of people not to be afraid of treatment.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: buffaloboy on March 09, 2010, 03:13:16 pm
Buffaloboy . I am sincere in hoping you get the physiological help you need to deal with your fear of taking the meds that will save your life .

Insisting every one zero in on your fear of side effects to control the conversation will not be very helpfull for you or anyone else .

Don't worry about me. I'll be fine.

It's interesting that you say I'm 'controlling the conversation'. Are we not allowed to discuss our own views and experiences anymore then? Are we all meant to agree with one another all the time?
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: RapidRod on March 09, 2010, 03:22:41 pm
Ignorance is not a view.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: buffaloboy on March 09, 2010, 03:26:53 pm
I would just like to point out for anyone who hasn't seen my posts in other threads, that I DID start HAART last year and found the side effects to be intolerable, not just a minor 'inconvenience'. In fact, they completely floored me and for the short time that I was on the drugs I was literally unable to have any life whatsoever.

Yes, I suppose it was better than being dead but, in all honesty, not much.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Miss Philicia on March 09, 2010, 03:31:15 pm
I would just like to point out for anyone who hasn't seen my posts in other threads, that I DID start HAART last year and found the side effects to be intolerable, not just a minor 'inconvenience'. In fact, they completely floored me and for the short time that I was on the drugs I was literally unable to have any life whatsoever.

Yes, I suppose it was better than being dead but, in all honesty, not much.

Generally when one encounters intolerable side effects one halts the medication and moves on to another one, but I'm sure you know this.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: buffaloboy on March 09, 2010, 03:31:42 pm
''Ignorance is not a view.''

It is ok for other opinions, apart from your own,  to exist, y'know.

And  having had first hand experience of HAART, I can hardly be described as 'ignorant'.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: RapidRod on March 09, 2010, 03:34:03 pm
''Ignorance is not a view.''

It is ok for other opinions, apart from your own,  to exist, y'know.

And  having had first hand experience of HAART, I can hardly be described as 'ignorant'.
How many combos have you tried?
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: skeebo1969 on March 09, 2010, 03:59:36 pm
I would just like to point out for anyone who hasn't seen my posts in other threads, that I DID start HAART last year and found the side effects to be intolerable, not just a minor 'inconvenience'. In fact, they completely floored me and for the short time that I was on the drugs I was literally unable to have any life whatsoever.

Yes, I suppose it was better than being dead but, in all honesty, not much.

   Buf, perhaps if you made your own thread regarding the issues you've had people would have a better understanding of where you are coming from.  Also, if you don't mind me asking, what are your plans?  Speaking in terms of your numbers of course, do you plan on going back on meds eventually?  Just curious...

   Of course I ask this pretty much figuring you are going to eventually start (hoping atleast), which leads me to wonder why this line in the sand is being drawn by you and the others.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Matty the Damned on March 09, 2010, 04:02:43 pm
   Buf, perhaps if you made your own thread regarding the issues you've had people would have a better understanding of where you are coming from.  Also, if you don't mind me asking, what are your plans?  Speaking in terms of your numbers of course, do you plan on going back on meds eventually?  Just curious...

   Of course I ask this pretty much figuring you are going to eventually start (hoping atleast), which leads me to wonder why this line in the sand is being drawn by you and the others.

He did. He can't take pills because he and his doctor don't "gell".

MtD
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Miss Philicia on March 09, 2010, 04:05:25 pm
He did. He can't take pills because he and his doctor don't "gell".

MtD

Wasn't it more like three doctors?
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: skeebo1969 on March 09, 2010, 04:23:06 pm


  I always wanted to do this....  here it goes:


  *face palm*
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Joe K on March 09, 2010, 04:32:15 pm
I don't see any line being drawn by anyone, rather, I see a couple of folks, who have fears about HAART, that they seem unable to address. Criticizing prevention efforts, is relatively futile, because they are what they are. All we can try to do, is to educate and help people prepare themselves, if they need HAART. As much as I would like to help you guys, I'm not qualified because your issues, go far beyond any fears of HAART and I do not believe you find any answers by continuing to bicker about what everyone should do, to help you get over your fears of HAART.

Great thread Tim and everybody and with that, I now return you to your regularly scheduled bicker.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: David_CA on March 09, 2010, 04:38:05 pm
I wonder how long those listed above as not starting HAART becuase of concerns of side effects wait.  I'd bet that they wait until they have no choice but to die or start meds with a significantly damaged immunity system and all sorts of nasty OI's. 

On one hand folks bitch about the 'normal' looking people in HIV med advertisements.  Then others complain that they think the drugs are going to poison due to not knowing how good the newer meds really are.  I'm really not sure what one can say to make either side happy.  Of course, we know the motivation for using attractive models for ads, but what else can we do?  Reading through these forums will show that meds can lead to a normal existence.  Hell, there are several positive accounts of how meds improve life with minimal side effects right here in this thread. 





Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: PeteNYNJ on March 09, 2010, 06:54:10 pm
I agree with Skeebo about starting your own thread, Buff.  Maybe if you spell out your situation without feeling you have to defend your position, it will come across better.  I would like to read what you plan to do about your aversion to HAART but I don't think this forum is the place to talk about it.

Moffie's OP is so perfect for the point he is trying to get across that I would hate for it to get closed because of fighting back and forth. 

Pete
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: buffaloboy on March 10, 2010, 05:11:51 pm
I somehow managed to miss this above, but I've re-quoted it (with my emphasis added) as I think it's important to this discussion:

''A second major finding of the survey is that many are concerned about ARV side effects and, as a result, avoid or stop HIV treatment. Overall, 26 percent of the respondents reported that they had elected not to seek treatment because they believe that ARV therapy causes too many side effects, with responses from Europe (42 percent) and South Africa (29 percent) being most prevalent. What’s more, 34 percent of treatment-experienced survey respondents discontinued ARV therapy primarily because they believe it caused too many side effects.''

So, a quarter of respondents hadn't sought treatment because of fears over side effects, and around a third stopped taking them because of similar concerns and experiences. These are not small numbers by any means and, although I've said it before, it bears repeating: something, somewhere isn't working.

Rather than side effects being brushed aside as a 'mere inconvenience', perhaps the time has now come to have an open and honest discussion about the negative impact the drugs can have on the lives of some of those who take them and importantly, what can be done so that patients don't feel as if they must suffer in silence.

I still contend that this thread is a good idea for the very small minority who may not be aware of the extreme damage -including death- that can be wrought on the body by untreated HIV. However, as I've been trying to point out, and as the above study makes abundantly clear, there's another side to this issue that I don't think has ever been properly addressed. When, or rather, if, this happens, the number of people who report they 'can't wait' to start treatment, could well go through the roof.

And that's what most people here, along with the doctors, want. Isn't it?
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Matty the Damned on March 10, 2010, 05:23:30 pm
Rather than side effects being brushed aside as a 'mere inconvenience', perhaps the time has now come to have an open and honest discussion about the negative impact the drugs can  have on the lives of some  of those who take them and importantly, what can be done so that patients don't feel as if they must suffer in silence.

As long as I've been positive, all I've ever heard people talking about are HIV medications and their side effects. This whole website is dedicated to HIV medications and their side effects.

I don't doubt that folks like you suffer Buff, but y'all certainly don't do it in silence.

MtD
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: buffaloboy on March 10, 2010, 05:53:29 pm
Rather than side effects being brushed aside as a 'mere inconvenience', perhaps the time has now come to have an open and honest discussion about the negative impact the drugs can  have on the lives of some  of those who take them and importantly, what can be done so that patients don't feel as if they must suffer in silence.

As long as I've been positive, all I've ever heard people talking about are HIV medications and their side effects. This whole website is dedicated to HIV medications and their side effects.

I don't doubt that folks like you suffer Buff, but y'all certainly don't do it in silence.

MtD

Be that as it may, Matty, so very often it seems as if the concerns are, to all intents and purposes, falling on deaf ears ('mere inconvenience').
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Matty the Damned on March 10, 2010, 06:01:05 pm
Be that as it may, Matty, so very often it seems as if the concerns are, to all intents and purposes, falling on deaf ears ('mere inconvenience').

Yeah I get it. I suspect this is at the root of your problems with your doctor(s). You don't feel like you're being listened to. You wanna have your point of view validated.

Which is fine. I dig it. But being listened to is not the same has having everyone agree with you. Check out just about every thread you've posted in here. People are listening to you, we know that from the responses you get. It is just that some of us don't agree with everything you say.

And that's good too. It's how discussions go.

As far as the side effect thing goes, it seems pretty clear to me. Don't take the pills - die a ghastly death as outlined in the OP by Daddy Tim. Take the pills and you run the risk of side effects, which are generally a mild inconvenience but for some can be more serious.

Really, it's not rocket surgery.

MtD
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: buffaloboy on March 10, 2010, 06:12:59 pm
This isn't about me and I think the results of the study that show how many people don't start, or stop treatment, because of side effects, show that a there's a much broader issue here, as much as certain people might not like, or are unable, to acknowledge that.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: skeebo1969 on March 10, 2010, 06:14:25 pm
Be that as it may, Matty, so very often it seems as if the concerns are, to all intents and purposes, falling on deaf ears ('mere inconvenience').

No it doesn't.  See Buf the problem is that we've heard it all before, much of it came from our own lips and keyboards.  I had issues with meds, much like you, only difference is I fought through it for 4 years like an idiot.  Just recently I switched combos and the results have been nothing less than superb, seriously.

Like I said, my journey started 4 years ago.  Reading about all these side effects, how could I not be scared?  I wrote about it here in the forums about how I was staying with my friends so they could watch out for me after I took my first dose.

Constant nausea became the norm and it was always so severe.  I may get it now from time to time, but it is workable, nothing like that room spinning crap I dealt with before.  The best part is it seems like my depression has lifted....

Anyways...

We've all been afraid, dealt with, and learned other options perhaps when dealing with the side effects from meds.  To  be quite frank with you Buf, conquering these fears or dealing with whatever  comes our way is a personal task one must take on, there is nothing the group can really do for you other than holding you down and force feeding it to you.  Which is not working, and it makes neither side wrong BTW.

I might be wrong, but my guess is eventually you will be taking meds once again.  What leads up to that point is totally up to you.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Hellraiser on March 10, 2010, 06:15:11 pm
This isn't about me and I think the results of the study that show how many people don't start, or stop treatment, because of side effects, show that a there's a much broader issue here, as much as certain people might not like, or are unable, to acknowledge that.

So you're worrying about all the other people out there who have trouble taking their medication and you think we should form a super group to address the issue?  This kinda is about you as this forum is for the people who are members here and this post was directly addressed to "those of you whi might be questioning HAART".
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: buffaloboy on March 10, 2010, 06:41:20 pm
So you're worrying about all the other people out there who have trouble taking their medication and you think we should form a super group to address the issue?  This kinda is about you as this forum is for the people who are members here and this post was directly addressed to "those of you whi might be questioning HAART".

No, really, this isn't about me personally but thanks for your concern anyway. ;-)
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Moffie65 on March 10, 2010, 08:36:03 pm
Rather than side effects being brushed aside as a 'mere inconvenience', perhaps the time has now come to have an open and honest discussion about the negative impact the drugs can have on the lives of some of those who take them and importantly, what can be done so that patients don't feel as if they must suffer in silence.
Buffalo,
Side effects, YES.  I have been hospitalized many times because of medication sides.  Spent five years in a wheelchair for them also.  Permanently disabled because of the medications.  So, what do you want to talk about?  I'm not dead, and have spent the last 30 years, trying to educate about HIV/AIDS, and yet........  you still question my voracity.  Got news for you, if you take meds or don't is no skin off my nose, but I would be remis in my focus, and calling if I didn't try my best to get the truth of a deadly disease across to you so you don't end up grub food, six feet under.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Moffie65 on March 10, 2010, 09:06:16 pm
You know what Buffalo, I’m going to undress right here on AIDSmeds.com.

I have been to hell and back, including dead once, with this disease, and I have to tell you the truth, I have on more than one occasion thought about just ending it all.  When you have life issues like your “PERMANENT” disability notification from the Social Security Administration, and you sit there and read it for the first time; finally it dawns on you, “I will never be able to get another job, or hold down a five day a week job”.  Not because you don’t want to, not because you don’t need to, not because you don’t ever want to work another day in your life.  NO it is simply because your body won’t let you do that.  So, you must reconfigure your life to live on what they send you monthly.  If your life expenses don’t match what is coming in, you must sell your home, or your car, or whatever valuable you can get your hands on, and re-adjust your life to make sure you don’t have to completely give up your independence. 

Meanwhile, you have to go to the bathroom to barf your guts out, or shit your brains out, but the Peripheral Neuropathy only allows you to CRAWL to the bathroom, and your knees are sore from the last trip over the tile floor.  Soon enough a wheelchair became part of my life, and I was there for five years.  Finally, I just kept spending more and more time standing and walking and getting some mobility back.  The pain remains mostly unbearable, but when I am living; it becomes bearable.  Yes, it is truly a cakewalk, if you like walking in shit.

However, the survival gene sets in, and you fight on.  Nothing in HIV/AIDS comes easy, nothing isn’t worth the effort; we only “STRIVE” to keep some semblance of order and peace in our lives. 

The meds have allowed me to change most of all that.  Today, the PN is again increasing, however, so I am trying to work as hard as I can to stay ahead of the incapability I know is coming in a few years.  In the meantime, I am completing a two year project to completely restore a 21 foot 1986 Toyota Motorhome, and just last week, before that last snow/wind storm, we installed the new high grade headliner.  The bath is done, all with nice metallic glass tile.  OOOh.  When it is done, I will have added a value of over $10,000 over what I paid for it.  Yes, you must keep busy; you have to live each day as though it is your last; not because you have HIV/AIDS, but because you have life. 

Think about it, and now I will put my clothes back on.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Moffie65 on March 10, 2010, 09:10:28 pm
This was a mistake.  Sorry.  I am ready for bed.  :-*
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: RapidRod on March 10, 2010, 09:17:08 pm
This was a mistake.  Sorry.  I am ready for bed.  :-*
That's alright Tim, I didn't look til you said you put your cloths back on.  ;)
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Alain on March 10, 2010, 09:52:21 pm
This was a mistake.  Sorry.  I am ready for bed.  :-*

Not in the least daddy Tim, and my only wish is for a good night sleep!  :-*
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: fearless on March 10, 2010, 10:17:49 pm
Thanks for the original post Tim.

I'm not quite sure why people are wasting time trying to convince a couple people with irrational fears about meds to overcome them, stop being so self indulgent. Let them be, I say. They'll learn soon enough.
There are plenty of people on the planet who would be envious to be in their position, to say, nah, I'll go against all common sense and scientific evidence and not take the life saving medication that I have access to, cause I'm worried I might get the squirts or something.
Suck it up you wusses and stop wasting everyone's time.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: skeebo1969 on March 10, 2010, 10:28:37 pm
This was a mistake.  Sorry.  I am ready for bed.  :-*

  That was not a mistake.  I'll accept your apology though for going to bed. ;)
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Jeff G on March 10, 2010, 10:45:49 pm
Thanks Tim for having the heart of a lion despite what your body is going through .

Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: tednlou2 on March 10, 2010, 11:54:13 pm
Thanks for the original post Tim.

I'm not quite sure why people are wasting time trying to convince a couple people with irrational fears about meds to overcome them, stop being so self indulgent. Let them be, I say. They'll learn soon enough.
There are plenty of people on the planet who would be envious to be in their position, to say, nah, I'll go against all common sense and scientific evidence and not take the life saving medication that I have access to, cause I'm worried I might get the squirts or something.
Suck it up you wusses and stop wasting everyone's time.

Are you talking about all HIVers who aren't on meds or the ones with CD4s dropping into dangerous levels and still scared/refuse to take them?  I'm still don't think that question has been answered--whether everyone is arguing for immediate HAART intiation and disagrees with the current guidelines.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: buffaloboy on March 11, 2010, 03:08:12 am
''and yet........  you still question my voracity''

Except I'm not.  Not at all.  In fact, I've stated a couple of times that I thought your opening post was worthwhile and that there may be some people who find it helpful.  And as much as I do believe that to be the case, it's not an approach which will necessarily be effective for everyone that you wish to target.

Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Jeffreyj on March 11, 2010, 04:09:18 am
Bravo Moffie!
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: griezzel on March 11, 2010, 04:19:46 am
I'm not quite sure why people are wasting time trying to convince a couple people with irrational fears about meds to overcome them, stop being so self indulgent. Let them be, I say. They'll learn soon enough.
There are plenty of people on the planet who would be envious to be in their position, to say, nah, I'll go against all common sense and scientific evidence and not take the life saving medication that I have access to, cause I'm worried I might get the squirts or something.
Suck it up you wusses and stop wasting everyone's time.

Ok, now it's my turn...

::face-palm::

HOW are people NOT getting the simple point being made? It sems that a misunderstanding popped up early in the thread and people keep perpetuating it. Sad.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: skeebo1969 on March 11, 2010, 07:40:26 am
Ok, now it's my turn...

::face-palm::

HOW are people NOT getting the simple point being made? It sems that a misunderstanding popped up early in the thread and people keep perpetuating it. Sad.

I see you're having the same issue I am having with the whole *facepalm* procedure.  Like you, I made the mistake of making it two words.  If you check the other instances where this useful tool was used it is always done so as one word.   I think the moderators are considering making this a feature you can use much like the quote button, not sure though...
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Ann on March 11, 2010, 10:03:50 am
Quote Ted:
Quote

Are you talking about all HIVers who aren't on meds or the ones with CD4s dropping into dangerous levels and still scared/refuse to take them?  I'm still don't think that question has been answered--whether everyone is arguing for immediate HAART intiation and disagrees with the current guidelines.


Ted, nobody is saying that treatment must be initiated immediately upon diagnosis and neither is anyone disputing the latest treatment guidelines.

However, there are some members here whose numbers have dipped far below the cut-off for treatment and they are wary of starting treatment - for whatever reason - and the reasons seem to be as individual as the posters.

I've been poz since '97 and I'm still not on meds. My numbers are fine, though (they're available for scrutiny in my profile). I'm not afraid of starting meds and I will when I need to start.

If you look at my numbers from late '07 through spring '09, some would say that under the newest guidelines, I should have started. However, since summer '09 my CD4 has been back over 500. So go figure. Maybe next time they dip and stay under 500 I'll start, but maybe not. It will depend on how low they go and how I feel physically. If they go and stay under 300, then I WILL start.

If I have any reservations about starting meds, it's because of adherence issues and not side effect issues. I'm just crap at taking meds in a regimented fashion. It's a wonder I didn't regularly end up pregnant back in the days when I was on the Pill. That's just how I am and at least I recognise my weaknesses.

Ann
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Inchlingblue on March 11, 2010, 10:38:35 am

If you look at my numbers from late '07 through spring '09, some would say that under the newest guidelines, I should have started. However, since summer '09 my CD4 has been back over 500. So go figure. Maybe next time they dip and stay under 500 I'll start, but maybe not. It will depend on how low they go and how I feel physically. If they go and stay under 300, then I WILL start.


Initially I had over 600 CD4s and they dropped to about 330 in three weeks time and after that they went back up to about 450. During that time I was confused about how to read the guidelines. Did they mean one should start when hitting the target number (at the time that number was <350) or if the numbers bounced back above the target (>350) were you OK and didn't have to start?

I asked Dr. Gallant about this, although I can't locate the Q&A at the moment, and he said the way to read the guidelines was that unless it is a very recent infection, once you hit the target number you are supposed to start, even if the CD4s then bounce back up.  Apparently it's an indication of more severe immune damage when you hit a nadir of <350 and leave it untreated.

I'm not saying you should start or not start, Ann, I know that you're very well-informed and responsible, but just wanted to share that.

You're body will certainly give you indications such as bad fatigue and maybe skin issues and fat loss in areas that you actually want fat, etc etc. I guess you're not experiencing any health or quality of life issues?
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Ann on March 11, 2010, 10:53:50 am
Hi Inch. Regardless of what Dr Gallant says, my doctor is a firm believer in looking for well-defined trends, not just one isolated result. And with all the ups and downs my numbers have had over the years, I agree with him.

My doctor is also a well-respected hiv pharmacologist and researcher and I trust what he says about the meds. There's one in the pipeline that he is hoping I can hold out for. He knows about my adherence issues and wants me on a once-a-day schedule, as do I.

He knows I won't take Sustiva, he doesn't think Reyataz would be a good fit for me (because of Norvir), and doesn't trust once-daily Isentress. The med he's hoping I can wait for is elvitegravir (http://www.aidsmeds.com/archive/GS-9137_1638.shtml) boosted with cobicistat (http://www.aidsmeds.com/archive/GS-9350_2301.shtml), which is another new med in the pipeline. He's very happy with the trial results of this combo so far.

I trust his judgement on the meds. I don't call him the Wizard of Poz for nothing! ;)

Ann
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Ann on March 11, 2010, 11:12:47 am
Inch, you edited your post to add the following while I was typing:

Quote

You're body will certainly give you indications such as bad fatigue and maybe skin issues and fat loss in areas that you actually want fat, etc etc. I guess you're not experiencing any health or quality of life issues?


I've had hiv-related diarrhea issues for years, but it's under control with non-ART meds. My diarrhea issues are why he is reluctant to put me on a combo that includes Norvir. He has other long-term slow-progressors who have the diarrhea issues and he said none of them ever really had this resolve completely upon initiation of ART, especially if their combo included Norvir.

I sometimes experience more fatigue than I would consider normal, but it's not what I would call a quality of life issue. My skin is fine ever since I got rid of the hep C. The only fat issue I have is having too much; you should see my gut. ;D

I sometimes have joint pain, but the further I get away from my hep C treatment, the less this happens. My doc says this is something else he's seen in LTSP. In my case it seems to have been more related to hep C (joint pain is common with hep C). For a while I used to have to use a walking stick to get around but touch wood, I haven't had to use it in over two years.

We had a very intense, in-depth discussion back in November about the issue of starting meds - I wanted his opinion in light of the new guidelines. That's when we went over the available combos. He made a very strong case for waiting for the new meds I mentioned above and as I've said, I trust the man. He also said that if I did start having issues that I felt were affecting my quality of life, I was free to opt for treatment.

Back when I was very newly diagnosed, I practically begged him to put me on meds. I wanted to feel like I was doing something. He patiently explained to me the pros and cons and in my case, the cons outweighed the pros. I'm so glad I listened to him. I've had many med free years that I wouldn't have had otherwise and it has done me no harm.

Ann
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: griezzel on March 11, 2010, 01:22:28 pm
If I have any reservations about starting meds, it's because of adherence issues and not side effect issues. I'm just crap at taking meds in a regimented fashion. It's a wonder I didn't regularly end up pregnant back in the days when I was on the Pill. That's just how I am and at least I recognise my weaknesses.

Ha! I'm terrible, too, at adhering to schedules. I'm currently shopping for a cheap "medication reminder" clock, one that allows you to set a number of alarm times. They all seem to have some slight variances in the way they function. I guess I ought to start a thread on the subject.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: skeebo1969 on March 11, 2010, 01:31:30 pm
Ha! I'm terrible, too, at adhering to schedules. I'm currently shopping for a cheap "medication reminder" clock, one that allows you to set a number of alarm times. They all seem to have some slight variances in the way they function. I guess I ought to start a thread on the subject.

  I use my cell phone's alarm.  Have 3 seperate times programmed in and it works great.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: blackwingbear on March 11, 2010, 01:38:03 pm
Ha! I'm terrible, too, at adhering to schedules. I'm currently shopping for a cheap "medication reminder" clock, one that allows you to set a number of alarm times. They all seem to have some slight variances in the way they function. I guess I ought to start a thread on the subject.

I think many of them have this rhetoric so drilled into their mind that if any problem is brought up (forgetfulness, supplemental nutrition, dealing with side-effects) they see it as a direct attack upon what they "know" and automatically assume that you are knocking these medicines - when actually you might not mean to, you simply looking for more advice than what is being spouted. Kind of a matter of they aren't actually "hearing" (seems a funny term for text-based) what you are saying but merely seeing it as an attack on these meds (which I believe we all agree save lives) - Like a witch-hunt for denialists carried to the extreme.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Miss Philicia on March 11, 2010, 01:40:09 pm
Insanity is never pretty.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: blackwingbear on March 11, 2010, 01:42:53 pm
Insanity is never pretty.

Sorry to hear you're having issues and hope it gets better for you.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: griezzel on March 11, 2010, 01:44:04 pm
Insanity is never pretty.
lol! i LOVE self-deprecating humour!

 :-*
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: fearless on March 11, 2010, 07:14:24 pm
Ok, now it's my turn...

::face-palm::

HOW are people NOT getting the simple point being made? It sems that a misunderstanding popped up early in the thread and people keep perpetuating it. Sad.

Stop slapping yourself in the head matey. it's rattling your brain. I read your original post and I got the point, hence my post. My poiint is that those with 'fear of meds' should simply be told to suck it up and take them, and not have their irrational fears fed and indulged by this continual circular discussion that is going nowhere. The fear is just self indulgence of the worst kind.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: griezzel on March 11, 2010, 07:18:33 pm
Stop slapping yourself in the head matey. it's rattling your brain. I read your original post and I got the point, hence my post. My poiint is that those with 'fear of meds' should simply be told to suck it up and take them, and not have their irrational fears fed and indulged by this continual circular discussion that is going nowhere. The fear is just self indulgence of the worst kind.

Brilliant! <sarcasm>

 ::)
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Moffie65 on March 11, 2010, 07:28:58 pm
Stop slapping yourself in the head matey. it's rattling your brain.

Don't worry Steve, I finally got it, he/she lives in Eureka Ca, the brain is already rattled, and done so real good by the quake.

The window opens, and the light comes in.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: blackwingbear on March 11, 2010, 08:27:29 pm
My poiint is that those with 'fear of meds' should simply be told to suck it up and take them, and not have their irrational fears fed and indulged by this continual circular discussion that is going nowhere.

OK, I reread the whole thread.....and I really can't find where anyone has a 'fear of meds'. I think we all agree they are lifesavers. A couple on here expressed a desire for more knowledge about statistics, and someone brought-up side-effects but I can't find anyone that denies they are lifesaving drugs. Could someone maybe point me to a particular area where a person expresses a fear of them?
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: blackwingbear on March 11, 2010, 08:32:13 pm
OK, I DID see something posted by griezzel about fear, but it was not in a pro-fear way.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: fearless on March 11, 2010, 09:11:15 pm
While it's certainly true that the fear of side effects keeps a large percentage of people from starting therapy, I'm pretty certain that using fear and attempting to scare them into taking meds is not the best approach. I have found the tone of many people's posts, who advocate taking meds over waiting, sooner rather than later, and some that responded to my concerns about possible side-effects, to be disturbing and even offensive.

Like it or not, the fear of pharmaceutical side-effects can be just as powerful as the fear of disease, even stronger in some cases. Each person with this fear must come to understand the facts and risks of treatment for themselves, talking with their (hopefully well-informed) doctor about specific areas of concern related to their unique physiology and medical history.

Most of us have been conditioned against scare tactics since we were children. It turns out that children are usually much smarter than they are given credit for and can make appropiate choices when given all the facts and the opportunity. Adults may be even less inclined or able to make good decisions, however, based on our "wealth" of personal experience, which tends to affect our judgement.

blackwingbear - here is grizzles very first post on the matter. if it is not about meds and their potential side effects I need to go back to school.

Anyway, I think I've now done one full circle and will spend my energy on something usefull.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: blackwingbear on March 11, 2010, 09:25:18 pm
blackwingbear - here is grizzles very first post on the matter. if it is not about meds and their potential side effects I need to go back to school.

Anyway, I think I've now done one full circle and will spend my energy on something usefull.

But what grizzles seems to be protesting is not the meds, but use of fear-tactics!!
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Miss Philicia on March 11, 2010, 09:32:29 pm
Mary please -- look at the dates in his sig line, then look at the date he registered his profile, then get back to us.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: blackwingbear on March 11, 2010, 09:42:12 pm
Mary please -- look at the dates in his sig line, then look at the date he registered his profile, then get back to us.

You mean the fact he just started Atripla?
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Fondoo on March 11, 2010, 10:17:41 pm
 I was on meds roughly 10 yrs then took a 5yr break from meds and monitoring. I think the break was in order because some bad side effects were starting to mount. But the lack of monitoring was a mistake and I have paid. Had months of trouble with MAC and now a recent battle with PCP.
   I am definitely ready to go back into treatment I can be very stubborn but as they say the burnt hand teaches best.
   
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: blackwingbear on March 11, 2010, 10:25:48 pm
I was on meds roughly 10 yrs then took a 5yr break from meds and monitoring. I think the break was in order because some bad side effects were starting to mount. But the lack of monitoring was a mistake and I have paid. Had months of trouble with MAC and now a recent battle with PCP.
   I am definitely ready to go back into treatment I can be very stubborn but as they say the burnt hand teaches best.
   

Very true. I had to be "burned" to learn my lesson too.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Miss Philicia on March 11, 2010, 10:41:19 pm
... and the rest of us are just mindless sheep on Planet Groupthink.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Moffie65 on March 11, 2010, 10:57:41 pm
OK, I reread the whole thread.....and I really can't find where anyone has a 'fear of meds'. I think we all agree they are lifesavers. A couple on here expressed a desire for more knowledge about statistics, and someone brought-up side-effects but I can't find anyone that denies they are lifesaving drugs. Could someone maybe point me to a particular area where a person expresses a fear of them?

Bear,

This post is titled correctly, and says nothing about the Fear of Meds, you suggest.
Secondly, we don't all agree, or else there would have been no reason for this very informative thread.

Lastly, I am going to illustrate your quandary with a bit of a story.  

If you are attending a conference, focused on HIV/AIDS, and you walk into a session that is attended by a large group of, very knowledgeable and experienced HIV/AIDS educators.  The first thing you do is start talking and traveling from conversation to conversation and all you do is go on about your knowledge, and your life story.  What happens is you will not hear or understand what is going on with all these people from around the globe who know each other.  Not only do they know each other, but they chat often about HIV and the life it brings.  Soon enough, you find that listening is to learn, and if so, you might understand that this thread was authored for not only you, but for many recently who didn’t even post in the thread.  I know this, and I know who these people are, so you might just take a while to look around this forum, check some of the older threads, but please don’t resurrect them.  They are there to give you some idea about who lives in these fora, and something about their lives.  

I am certainly not going to criticize you for diving right in, but sometimes that isn’t just the best approach to an international group that is really very close emotionally also.  
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: blackwingbear on March 11, 2010, 11:51:49 pm
Bear,
I am certainly not going to criticize you for diving right in, but sometimes that isn’t just the best approach to an international group that is really very close emotionally also.  



I'm still learning...hopefully same as everyone else, otherwise they've merely become a talking head. The one disturbing response I keep noticing on this forum, however, is that newbies and those deemed outsiders are NOT welcome - or at least not welcome to "speak". I was told to post an introductory thread - so I did. I'm no expert, and any observation I've made is just that.Discussion is permitted IF you have a been here a very long while and are well established here - problem is, that doesn't allow for anyone new to establish themselves here. I was merely making an observation based upon what I've noticed.   :)
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Matty the Damned on March 11, 2010, 11:56:17 pm

I'm still learning...hopefully same as everyone else, otherwise they've merely become a talking head. The one disturbing response I keep noticing on this forum, however, is that newbies and those deemed outsiders are NOT welcome - or at least not welcome to "speak". I was told to post an introductory thread - so I did. I'm no expert, and any observation I've made is just that.Discussion is permitted IF you have a been here a very long while and are well established here - problem is, that doesn't allow for anyone new to establish themselves here. I was merely making an observation based upon what I've noticed.   :)

Welcome to the big bad world of Internet message boards.

Online communities are funny places. Like all groups of humans they have established norms and fuck help the newcomer who blunders and upsets the delicate balance of things.

MtD
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: blackwingbear on March 12, 2010, 12:02:28 am
Welcome to the big bad world of Internet message boards.

Online communities are funny places. Like all groups of humans they have established norms and fuck help the newcomer who blunders and upsets the delicate balance of things.

MtD

Well, I certainly didn't mean to upset the balance and I'm still adjusting to the norms. S'pose I should ask for a wee bit of patience from those elite members of the close-knit community as I adjust to it!
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Matty the Damned on March 12, 2010, 12:09:24 am
Well, I certainly didn't mean to upset the balance and I'm still adjusting to the norms. S'pose I should ask for a wee bit of patience from those elite members of the close-knit community as I adjust to it!

Jeeez Darren. You don't get it. You wonder why people are a bit prickly towards you? Why don't you check out the very first post (http://forums.poz.com/index.php?topic=31515.msg385977#msg385977) you made here?

Let me quote it at ya:

I had a similar question, but there is just a bit too much caustic malevolence here to get a real answer. No offense to anyone, I just do not wish to become a target by asking a question.

In fact your first four posts are like that. You rocked up and the first words out of your gob basically read like:

"What a group of horrible fucktards you lot are!"

And you wonder why established members are a bit stand offish? Any "cliquishness" you're experiencing around here is entirely of your own making.

MtD
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: blackwingbear on March 12, 2010, 12:13:38 am
Jeeez Darren. You don't get it.

Oops. Excuse me for being honest.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Miss Philicia on March 12, 2010, 12:13:48 am
tut tut, Matty!  Stop with your nonsense!
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: skeebo1969 on March 12, 2010, 12:18:21 am

I'm still learning...hopefully same as everyone else, otherwise they've merely become a talking head. The one disturbing response I keep noticing on this forum, however, is that newbies and those deemed outsiders are NOT welcome - or at least not welcome to "speak". I was told to post an introductory thread - so I did. I'm no expert, and any observation I've made is just that.Discussion is permitted IF you have a been here a very long while and are well established here - problem is, that doesn't allow for anyone new to establish themselves here. I was merely making an observation based upon what I've noticed.   :)

This is false, new members come in here all the time with nay problem.  The only people who ever have a problem getting "established" are the ones that seemingly come in with guns blazing, much like you did.  It doesn't make it impossible mind you, just a little harder...  you're burning bridges you never built yet.    I have seen new people come in and disagree without a problem, but they back it up with credible links and references instead of coming in and discrediting information that has been established as factual.

BTW, you made your introductory post after you made comments regarding how these forums operate.  I would have replied, but I was still trying to wash out the sour taste from your previous work.

Edited to add:Fuck matty beat me to it (mentioning your real intro)...  I gotta get past this 3 finger typing method, how the hell can I remain competetive when people are typing like a professional secretary?

Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: blackwingbear on March 12, 2010, 12:21:00 am
I'm in a similar situation as the OP in thread I first posted in - just switch the roles. After seeing how caustic the regulars were to them because of their situation, I figured by stating mine it would make me a target. I can see how I came across a bit offensive and do apologize for that - in hindsight, I should have lurked around awhile first.

Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Dennis on March 12, 2010, 12:36:59 am
Interesting. A fairly new member was made to feel like he had to apologige for being honest and jumping in and participating. Incredible!
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: blackwingbear on March 12, 2010, 12:46:06 am
Interesting. A fairly new member was made to feel like he had to apologize for being honest and jumping in and participating. Incredible!

You mean this is normal??

Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: skeebo1969 on March 12, 2010, 12:53:14 am
You mean this is normal??

Yes it is, meet Dennis he does this all the time.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: StrongGuy on March 12, 2010, 03:31:07 am
This thread looks like it's going nowhere good, fast. I would just say I don't see anything controversial with Moffie's initial post or why the conversations within are devolving, as it's simply Moffie's personal experience and his advice. Take it or leave it.  It doesn’t mean you will have the same experience, but if you let your numbers get low enough, the real risk is there to develop those OIs. This isn’t made up – or hyperbole to scare people (if it was I would be the first person chiming in/calling it out because I find sensationalized fear mongering not based on fact very dangerous). But these OIs are documented facts as to what could happen. Check the literature.
 
It’s your gamble and life to decide what you want to do. Personally, I think it's very important to advocate the consideration of meds (through an informed process with you and your doctors) and support people as their journey leads them down that path. As they say in the city -- deep breathe peoples…

Peace out...
Mike
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: BT65 on March 12, 2010, 06:40:32 am
Interesting. A fairly new member was made to feel like he had to apologige for being honest and jumping in and participating. Incredible!

I find this post, Dennis, interesting as well.  Only because you never seem to offer help so to speak, just accusations.  I guess maybe you have nothing really productive to say, just more wagging of the finger.

Blackbear, it's not true at all about newer member not being "allowed" to post this or that (sorry, the quote function isn't working right), as you stated in a previous post.  We've, or rather I've, just seen too many times, the deaths that can happen when people don't take heart-felt advice to heart.  And we get a bit tired of new people, who really don't know our posting histories, to come here and tongue-lash well established members, for their own opinions and experience.  And this is what happened in this very thread.  It's not necessarily we established members shooting down newer members, rather the other way around.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: David_CA on March 12, 2010, 08:16:06 am
I'm in a similar situation as the OP in thread I first posted in - just switch the roles. After seeing how caustic the regulars were to them because of their situation, I figured by stating mine it would make me a target. I can see how I came across a bit offensive and do apologize for that - in hindsight, I should have lurked around awhile first.

Out of almost 2800 posts, I've gotten into heated disagreements in maybe 10 - 15 of them.  What's surprising about that, to me, is that I'm one of the most verbally opinionated people I know.  I am here on these forums, too.  I've not had problems with other members jumping on me about posts I've made.  When it has happened, you can bet most of the responders have also been ones who've posted in this thread, including me!   :D  That's fine, because this is an ongoing conversation of sorts based on what the OP stated with us adding our insight.

Opinions are fine, but they often don't change anything... especially for newcomers (either to HIV, meds, or the forum itself).  What does help these people are experiences and facts.  We try to provide this.  I know that I've always received as much help as I've needed from other members here when I was first infected, had questions about not having an undetectable viral load, etc.  My posts like these have only been answered with information, experiences, support, etc... exactly what a support group is supposed to do (I assume; I've never been to one) and without any negative posts from anybody.  In other words, I was a new member here once, too, and I wasn't harassed, etc by anybody.  

Opinions are easy to argue with; facts and experience aren't.  Let's save the arguments for opinion-related topics, not things like starting HAART to prevent OI's.  This is not directed to anybody in this thread specifically, although I quoted Darren initially.  There's a difference between being opinionated and disagreeable.  

(edited for typos)
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Dachshund on March 12, 2010, 08:32:39 am
Interesting. A fairly new member was made to feel like he had to apologige for being honest and jumping in and participating. Incredible!

Interesting. A fairly old member returns true to form. This is how you feel. You can't possibly know how this fairly new member feels. Sad how you use the posting of another person for your own agenda. Typical.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: blackwingbear on March 12, 2010, 10:15:42 am
  And we get a bit tired of new people, who really don't know our posting histories, to come here and tongue-lash well established members, for their own opinions and experience. 

Wasn't over their opinions or experience that anyone complained - it was over how caustically insulting and degrading they were being.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: blackwingbear on March 12, 2010, 10:19:32 am
 This is not directed to anybody in this thread specifically, although I quoted Darren initially.  There's a difference between being opinionated and disagreeable.  

(edited for typos)

Fine, then, I'm a disagreeable asshole - but, again, it wasn't their experience or opinions even that I disagreed with. It was their seeming need to be insulting and degrading.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: blackwingbear on March 12, 2010, 10:21:20 am
We've, or rather I've, just seen too many times, the deaths that can happen when people don't take heart-felt advice to heart. 

I never questioned the advice, though, just the emotional need of members to be caustic and insulting.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Moffie65 on March 12, 2010, 10:44:08 am
Bear,
Please do your homework.  There is no need to make three posts to answer three people.  You can simply address us in your post by putting our names above your comment, and get three people in one post.  Otherwise, I did read your introduction post, that was placed in the Long Term Survivor Forum.  SEE, you are just not paying attention to the SOP of this website.  Also, since you have decided to pick everyones nit, why did you read the whole thread without going to the lessons on OIs and read that many can happen below 500 CD4, and not 200.  I know you are bright enough to figure out why I bring this up.  Hint, "fear".
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Inchlingblue on March 12, 2010, 10:57:53 am
Bear: If you want to be able to do the QUOTE function to quote more than one previous post, just hit REPLY for the whole thread, if you scroll down below the blank screen for you to type your reply, you'll see everyone else's posts with INSERT QUOTE on the upper right. This allows quoting from several different previous posts in one post.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: blackwingbear on March 12, 2010, 02:34:18 pm
Bear: If you want to be able to do the QUOTE function to quote more than one previous post, just hit REPLY for the whole thread, if you scroll down below the blank screen for you to type your reply, you'll see everyone else's posts with INSERT QUOTE on the upper right. This allows quoting from several different previous posts in one post.

Thank you! That was extremely helpful! Everyone was complaining about multiple-posts, but no-one would simply tell me how to quote various posters. Thank you very much!
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Peacock on March 13, 2010, 05:43:28 am
great post, and interesting reading the responses!
Personally- the anxiety I felt when I was not on meds was huge, and watching my Cd4 drop slowly but steadily was horrific to me. The HAART treatment was like a life jacket thrown to me at the right time, and I grabbed and consumed it-despite the long list of side effects because I knew it would improve my life!... and it did.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Inchlingblue on April 14, 2010, 06:24:06 pm
There's one in the pipeline that he is hoping I can hold out for. He knows about my adherence issues and wants me on a once-a-day schedule, as do I.

He knows I won't take Sustiva, he doesn't think Reyataz would be a good fit for me (because of Norvir), and doesn't trust once-daily Isentress. The med he's hoping I can wait for is elvitegravir (http://www.aidsmeds.com/archive/GS-9137_1638.shtml) boosted with cobicistat (http://www.aidsmeds.com/archive/GS-9350_2301.shtml), which is another new med in the pipeline. He's very happy with the trial results of this combo so far.


Once-daily Isentress is likely to be officially approved much sooner than Gilead's Quad, which is the one you refer to. The Quad is very promising but it's essentially another integrase inhibitor with a new booster (plus Truvada). Even once it's approved there will have been many more years of research supporting Isentress so why jump onto a new bandwagon when there's something more tried and true?

Unless of course, some horrible unexpected side effect starts emerging all of a sudden from Isentress use but that's (hopefully) unlikely at this point.

LINK:

http://forums.poz.com/index.php?topic=26743.0
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: RJNYC on April 15, 2010, 10:51:35 am
Like a witch-hunt for denialists carried to the extreme.

This is a grim subject for a first post on the forum, but denialists specifically target message boards like this and have done for many years. Because they know they can't openly try and promote the BS of Duesberg et al, they try subtler infiltration and so it's no wonder moderators end up getting a bit paranoid. I'm pretty sure this is the same buffaloboy:

http://forums.questioningaids.com/showthread.php?t=5618

And Etay is allowing himself to be used to promote Duesberg's organization "Rethinking AIDS"

http://www.youtube.com/watch?v=gJjMVp4pmBw

Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Inchlingblue on April 15, 2010, 11:43:36 am
This is a grim subject for a first post on the forum, but denialists specifically target message boards like this and have done for many years. Because they know they can't openly try and promote the BS of Duesberg et al, they try subtler infiltration and so it's no wonder moderators end up getting a bit paranoid. I'm pretty sure this is the same buffaloboy:

http://forums.questioningaids.com/showthread.php?t=5618

And Etay is allowing himself to be used to promote Duesberg's organization "Rethinking AIDS"

http://www.youtube.com/watch?v=gJjMVp4pmBw


Wow, thanks for posting that.

Buffaloboy has a hidden agenda, quelle surprise!
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Miss Philicia on April 15, 2010, 12:16:01 pm
I'm pretty sure this is the same buffaloboy:

http://forums.questioningaids.com/showthread.php?t=5618

Indeed it is -- is that a denialist web site?

edit:  Why indeed it is!  tut tut... and BB kept claiming he was not a AIDS dissident.  I'll bet $10 that he will come in here and claim that the name similarity is mere coincidence.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Miss Philicia on April 15, 2010, 12:16:25 pm
Wow, thanks for posting that.

Buffaloboy has a hidden agenda, quelle surprise!

Oh, I'm not sure how "hidden" it is/was.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Boo Radley on April 15, 2010, 12:26:04 pm
Come now... we all know the questions asked by Duesberg were valid in 1984.   Just because they've been answered numerous times since then is no reason these brave souls should stop asking the same questions ad nauseam.   

I know for a fact Yersinia Pestis IS NOT the cause of Bubonic Plague.  It's AZT, pure and simple.  Refute that, you merchants of death!!

Use your minds and think outside the box... of sanity. 
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Moffie65 on April 15, 2010, 04:03:51 pm

Use your minds and think outside the box... of sanity. 

I can't even believe you allowed your fingers to type these words.  WOW.  Are you by any chance looking into a mirror this morning?
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Boo Radley on April 15, 2010, 05:35:21 pm
I can't even believe you allowed your fingers to type these words.  WOW.  Are you by any chance looking into a mirror this morning?

What are you talking about?  Ever heard of sarcasm?  Did you read any of the posts preceding mine?  Screw that, did you even read my post?  You think it's serious?

You've always done a fantastic job taking umbrage over nothing but if you're serious about my post you've outdone even yourself.  

Look in the mirror yourself, Muffy.  
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Rev. Moon on April 15, 2010, 06:07:43 pm
I'm pretty sure this is the same buffaloboy:

http://forums.questioningaids.com/showthread.php?t=5618

And Etay is allowing himself to be used to promote Duesberg's organization "Rethinking AIDS"

http://www.youtube.com/watch?v=gJjMVp4pmBw



Please. These two are no more than pure, lonely, rejected, and misunderstood victims.  We are the evil witches, pawns of big scary pharrma, trying to force feed them toxic pellets for a disease that apparently can be cured with green tea, black walnuts, fish, and meditation.

Agenda? Meh! 
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Boo Radley on April 15, 2010, 06:21:56 pm
Please. These two are no more than pure, lonely, rejected, and misunderstood victims.  We are the evil witches, pawns of big scary pharrma, trying to force feed them toxic pellets for a disease that apparently can be cured with green tea, black walnuts, fish, and meditation.

Agenda? Meh! 

You forgot to mention the DEADLY AZT that killed so many in the early years of the epidemic... long before AZT, an unsuccessful cancer treatment,  had even been pulled off the shelves of the NIH.   I guess those people snorted too many poppers.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Etay1207 on April 15, 2010, 07:38:16 pm
Tim Horn wrote this:
What Moffie's talking about is the actually prevalence of the JC virus -- the microorganism believed to be responsible for the destruction of healthy brain tissue in people with PML. The virus can be found lying dormant in the central nervous systems of 85 to 90 percent of adults all over the world; it truly is an ubiquitous bug. In fact, its one of those infections that people never really "get rid of," but rather have healthy enough immune systems to keep in check for the duration of their lives. Fortunately, JC virus rarely causes problems among people living with HIV, even those with serious suppressed immune systems -- but the risk is very much there for those with CD4 counts in the double digits. 

In this way, JC virus is like numerous other viral infections -- including herpes simplex virus II, varicella (the chickenpox virus), human herpes virus-8 (responsible for KS), and cytomegalovirus. These viruses are quite common in the adult population (the prevalence of CMV infection, for example, exceeds 90 percent among men who have sex with men in some series), but as a rule, they're only likely to cause disease -- to take the "opportunity" to cause illness  -- in those without the immune systems to keep them at bay. (The microorganisms responsible for PCP and MAC work somewhat similarly -- these are ubiquitous in the environment and humans are exposed to them on a regular basis; only those with compromised immune systems are likely to develop serious disease from these otherwise harmless bugs; a fungus and bacterium, respectively).

Now this is the problem I have with IRS.  This is why it's not making sense to me.  I've been told (by my doctor as well as people on these forums) that I am not sick because I have no immune response.  But 90% of the population is not sick because their immune systems keep these viruses in check.  I'm being honest and would appreciate an honest reply as to why there is a difference in why I'm not showing symptoms and why an HIV- person is not showing symptoms to these viruses mentioned. 



RJNYC posted a link to a video of me edited and used by a denialist(which is a "NO NO" by the way).  Some denialist love me because I'm not on meds and I'm knowledgedable about both sides of the debate.  Some denialist don't like me too much.  But that's a different story. I'm no dummy.  I know that if I were to start treatment or if I were to get sick, I would have no value to them. But some of them may still use my story as true even though I have resorted to treatment.  Example: There is a website dedicated to HIVers who have either stopped treatment, or never started.  My story is on that site as well.  I emailed each one of the other people who have posted their stories.  Of those that have responded, half of them are back on treatment.  The site has not been updated to portray that very important fact.   

RJNYC also posted a link to their forums. (which is another "NO NO").  If you read through you will see my posts.  Not only will you see my post, but you will see post of people who are taking meds and argue on the side of the orthodoxy.You will also see post and replies by people who have quit taking their meds just to go back on them later due to illness. 

There are 3 in my household who are HIV+. Myself, my fiance, and one of our kids.  I am the only one not on meds.  Not only do I support my partner and child being on treatment, but I remind them to take their meds twice a day, everyday.  They are both 100% compliant. 

I have decided to stay off treatment until I was fully convinced that treatment is in my best interest.  Quotes like the one given by Tim Horn is why I question if I need to be on meds right now.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Hellraiser on April 15, 2010, 07:45:01 pm
I love that buffalo got caught red handed.  At least the others try to hide it a little better.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Miss Philicia on April 15, 2010, 07:49:23 pm
I love that buffalo got caught red handed.  At least the others try to hide it a little better.

Remember his gay friends that were getting married but he'd become alienated from, and he spent a month wringing his hands about attending?  I'd bet money these friends distanced themselves from him when they saw him get HIV and become a dissident.  

Then again I thought he was full of BS from Day One.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Boo Radley on April 15, 2010, 08:17:25 pm
...
I have decided to stay off treatment until I was fully convinced that treatment is in my best interest.  Quotes like the one given by Tim Horn is why I question if I need to be on meds right now.

My best friend died on June 28, 1997 because by the time he began taking meds his immune system was too weak to deal with the HIV meds and treatments for the OIs he developed literally within a few weeks.  When he got his first CD4 count it was about what yours is now.  VL testing wasn't done routinely then but that's beside the point.  Glenn lost sight in one eye and partially in the other from CMV and became so sick with disseminated cryptococcosis he could barely take the three weekly treatments of IV Amphotericin B.   Again, this all occurred over about 4 weeks.  That was in late 1996.  I watched my best friend die a slow, painful, miserable death because he refused to seek treatment earlier when he might have had a fighting chance.  Up until the time he became ill he felt fine.

What everyone has been telling you is you're playing with fire. You may be one of the rare people who will live for years where you are now but more likely you'll just get sick and, if you're not lucky, too sick to fight off the side effects of meds and the OIs.  It's your life, though, but do you really want your fiancee and children to see you dying and know you died when you might have lived?  Gook luck, my friend.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Tim Horn on April 15, 2010, 10:46:55 pm
I have decided to stay off treatment until I was fully convinced that treatment is in my best interest.  Quotes like the one given by Tim Horn is why I question if I need to be on meds right now.

Etay:

I'm a little taken aback that my comments on the immune system and various infectious diseases have somehow translated into a reason for you to avoid meds. Obviously, I didn't spell things out clearly enough.  

Think of it this way -- HIV doesn't cause the entire immune system to become suppressed, but rather kills off a key component of the immune system: CD4 cells. CD4 cells are like the conductors of the immune system; lose too many of them and the rest of the immune system can't work in sync to fight an infection and to avoid unnecessary damage. Without CD4 cells, microorganism-fighting cells like CD8 cells simply remain oblivious to the fact that an infection is spreading uncontrollably in the body. CD4 cells also play a role in keeping the immune response at bay -- without them, other immune system cells, such as macrophages, go unchecked in their release of inflammatory chemicals and their attack on healthy tissues.  

In immune-competent individuals with healthy CD4 counts, the immune system is able to keep persistent microorganisms -- such as CMV and herpes simplex virus -- dormant in the body. If these microorganisms decide to begin replicating, "memory" CD4 cells (a group of CD4 cells formed after the infection was first encountered by the immune system) can quickly respond, mobilize CD8 cells and effectively prevent the microorganism from replicating uncontrollably, all before inflammatory components take over and literally go ballistic.  

In immune-suppressed individuals, especially for those with "holes" in their memory CD4 cell repertoire (and the longer HIV is allowed to replicate, the greater and more numerous these holes become), the disease-fighting components of the immune system are unable to contain the spread of the infection, while inflammatory components of the immune system continue unchecked, causing serious damage such as destroyed retinas (CMV), severe cutaneous and system disease (herpes zoster), and so on.

I'm not sure who told you that you're not sick because you have no immune response. At best, this simply isn't true; at worst, its a downright dangerous assumption. Without CD4 cells, Etay, you still have an immune response -- an unguided, highly unpredictable, potentially lethal immune system that essentially burns down the house without ever killing the rat.

Why haven't you been sick? I can't say -- it could be that you have just enough memory CD4 cells to keep persistent infections (e.g., CMV and other herpes viruses) in check and just enough "naive" CD4 cells to respond effectively to new infections (e.g., MAC and cryptosporidiosis, to name a few). It's when the CD4 count falls below 200 -- and certainly below 100 -- that these holes  can become so significant that, should an older infection decide to wake itself up or you come into contact with a new disease-causing microorganism, your immune system will simply be unprepared to deal with it.

What's more, waiting to start antiretroviral therapy until you are sick is a seriously dangerous risk. Supposing you end up dealing with an opportunistic infection that causes intractable diarrhea or profound nausea -- the meds won't stay in your gut long enough to be absorbed properly. And don't forget -- antiretroviral therapy can take months to even partially restore the immune system, especially in people with very low CD4 cell counts to begin with. Make no mistake about it, antiretroviral therapy in critical times will not have an instant Lazarus effect.    

I've had friends who have suffered serious opportunistic infections when their CD4 cells were around the 200 mark; I've also had a few friends who have remained well for many months with a CD4 count below 50. Sadly, they ended up getting sick -- one with cryptosporidiosis that required hospitalization and weeks of trial-and-error treatment before it could be stabilized, but not before he lost more than 35 pounds. He never recovered fully from that, despite going onto antiretrovirals, and died 11 months later.

Etay, nobody here is saying that you should be sick now. What people are concerned about, myself included, is what will happen when you do become sick. It could be next week, next month or two years from now. I don't know -- nobody does, least of all you. I strongly encourage you to think about heading off trouble before it starts.

Tim
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Moffie65 on April 16, 2010, 10:17:06 am
Thank you Tim for taking the time to clarify a part of HIV that is difficult at best, to explain with understanding.  I appreciate that.  :)
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Nestor on April 16, 2010, 05:58:21 pm
Wow, thanks for posting that.

Buffaloboy has a hidden agenda, quelle surprise!

I love that buffalo got caught red handed.  At least the others try to hide it a little better.

Sorry to rain on the parade, but if you had actually read a few of the threads in those forums, you would have seen that BuffaloBoy has received extremely frigid treatment there precisely for asking the kind of questions that make dissidents very uncomfortable and for, not to put too fine a point on it, not being a dissident.  His having taken atripla in the recent past ought to suggest that as well.

Check out his role in this thread: http://forums.questioningaids.com/showthread.php?t=6014, and this one: http://forums.questioningaids.com/showthread.php?t=6053, in which a zealot accuses him of being an inflitrator, rather as one has accused him of being one here, now. 

Don't we have enough to deal with, having HIV, without initiating witch-hunts on each other? 
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Inchlingblue on April 16, 2010, 06:10:34 pm

Don't we have enough to deal with, having HIV, without initiating witch-hunts on each other?  

We have enough to deal with without you taking on the role of moral arbiter.

It's helpful for you to point out the nuances of Buffaloboy's posts but is it too much to ask for you to keep your judgments of others to yourself?

The comments made by me and by Hellraiser hardly qualify as "witch hunts." I (and I believe Hellrasier as well) have been very helpful to Buffaloboy when he's been on here asking for advice (advice about taking ARVs that he is so reluctant to take that it's easy to come to the conclusion that he could be a denialist).

 
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Nestor on April 16, 2010, 10:44:15 pm

Sorry, but for this to be more like a witch hunt there would have had to be a torch-light procession.

First RJNYC raises the spectre of "subtle infiltration".  Then he dredges up something BB wrote in another forum more than a year ago, and a whole crowd examines the evidence and tries to see it in context simply jumps on the bandwagon assuming BB to be guilty without, apparently, even glancing at the evidence at all. 

Apparently nobody remembers that six months after writing the supposedly incriminating posts at questioningaids, BB took the not very denialist-like step of going on atripla. 

Since then he's been vilified and attacked there again and again for asking tough questions and departing from the denialist party line, so it was a little too much for me to see him attacked here simply for being there. 

As for "judgements of others", please--there are members here who write more scathing attacks on others twenty times a day. 


The comments made by me and by Hellraiser hardly qualify as "witch hunts." 

 Sorry, but saying that someone has a "hidden agenda", or that you're glad he got "caught red-handed" qualifies. Even more so does that next little charming bit: 

Quote
at least the others try to hide it a bit better
 

The others?  So we are all supposed to wonder who these mysterious other secret denialists are whom HR suspects of lurking in our midst?  That goes beyond "witch-hunt"--it's the kind of thing that appeared in Pravda whenever a fresh purge was being planned. 


I (and I believe Hellrasier as well) have been very helpful to Buffaloboy when he's been on here asking for advice 

Yes, you were in fact very helpful, as you often are, when he asked for advice about various meds. --http://forums.poz.com/index.php?topic=30579.0--but it's hard to see much evidence of a "hidden agenda" behind that thread! 

.... ARVs that he is so reluctant to take that it's easy to come to the conclusion that he could be a denialist).

 

Or it could be that he had a traumatic experience with atripla and as the saying goes, once bitten twice shy.  And no, to assume that everyone who's afraid of side-effects and reluctant to start HAART is a denialst is not "easy"--it's paranoid, and it's about as witch-hunt like as you can get. 
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Miss Philicia on April 17, 2010, 12:32:43 am
I bet that you're a lot of fun at a party, Nestor.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Rev. Moon on April 17, 2010, 01:16:06 am
::yawn::

tl;dr
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Moffie65 on April 17, 2010, 10:02:34 am
Nestor,  I don't know where on the planet you hail from, but you are severely lacking in a historical perspective on U.S. delivery of HIV services.

Don't we have enough to deal with, having HIV, without initiating witch-hunts on each other? 

NO, we don't have enough to do.  There is a long tradition of HIV care in this country of sorting out those who deny the efficacy of therapy, and those that would deny the impact of HIV on our society.  Along with that, the money flow from Washington, to do preventative work, along with HIV services is a limited fund.  Add to that those who would masquerade as sincere, to get some of those dollars; creates a need to remain vigilant in our attempt to keep the work pure and honest.  The last 8 years have done enough to damage our care and access to it, and it is even more important to squash people who are here to do us harm by the dissemination of falsehoods and lies.  So, I hope you now understand why we in this country are always on the lookout for those that would steal our line of support, just to gather up as much money as possible under fraudulent purposes.  Those that do these things, have a whole passel of people around them, some conscious of what they are doing and others not so much.  But in the end, prosperity off the backs of those who are considered vermin in our country, is a goal of those who worship money and what it can get them. 

Right now, there are more and more people being placed on waiting lists for medications, as the States steal, borrow and misappropriate millions of dollars meant for buying medications for all of us who happen to be unable to get health insurance.

If you would suggest we sit on our hands and not advocate for life and truth in this great sick country; then you simply are out of touch, and if you think for one minute that your infantile admonishments are going to keep me from voicing my alerts, and opinions about those who are in HIV only to reap the dollar benefits; you would be VERY mistaken.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Hellraiser on April 17, 2010, 10:07:22 am
I specifically didn't name the people who I suspect have a denialist agenda because someone got warned in a previous thread for doing the very same thing.  I'm not trying to cast aspersions but when half or more of someone's post history is "I'm questioning meds because" and they proceed to go on about everything while their numbers continue to decline I become somewhat suspicious.  Anyway, that's why I phrased it that way.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Nestor on April 17, 2010, 01:33:08 pm
I bet that you're a lot of fun at a party, Nestor.

I'm actually a lot of fun at a party; I'm just not very helpful at an auto-da-fe.

Nestor,  I don't know where on the planet you hail from, but you are severely lacking in a historical perspective on U.S. delivery of HIV services.

NO, we don't have enough to do.  There is a long tradition of HIV care in this country of sorting out those who deny the efficacy of therapy, and those that would deny the impact of HIV on our society.  Along with that, the money flow from Washington, to do preventative work, along with HIV services is a limited fund.  Add to that those who would masquerade as sincere, to get some of those dollars; creates a need to remain vigilant in our attempt to keep the work pure and honest.  The last 8 years have done enough to damage our care and access to it, and it is even more important to squash people who are here to do us harm by the dissemination of falsehoods and lies.  So, I hope you now understand why we in this country are always on the lookout for those that would steal our line of support, just to gather up as much money as possible under fraudulent purposes.  Those that do these things, have a whole passel of people around them, some conscious of what they are doing and others not so much.  But in the end, prosperity off the backs of those who are considered vermin in our country, is a goal of those who worship money and what it can get them. 

Right now, there are more and more people being placed on waiting lists for medications, as the States steal, borrow and misappropriate millions of dollars meant for buying medications for all of us who happen to be unable to get health insurance.

If you would suggest we sit on our hands and not advocate for life and truth in this great sick country; then you simply are out of touch, and if you think for one minute that your infantile admonishments are going to keep me from voicing my alerts, and opinions about those who are in HIV only to reap the dollar benefits; you would be VERY mistaken.


I'm confused--where did I suggest we not advocate for life and truth?  I merely suggested we not gang up on and attack buffaloboy.  Are you saying that he is "in HIV only to reap the dollar benefits"? 

If anyone is wondering why I go on about these things, it's because they kill this forum, which can be, and often is, an invaluable source of information and support for all of us who need it, but which then often gets dragged down into bickering and acrimony and the snarky one-liners that pass for humor in certain quarters.  That's bad enough; we don't need to add paranoia to the brew, and when I see six or seven people attack a fellow forum member as a "subtle infiltrator" with a "hidden agenda", I know what's going on and I'm going to say it.  If you find that infantile, too bad.
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Inchlingblue on April 17, 2010, 02:25:01 pm
For the record when I described Buffaloboy as having a "hidden agenda," this is what I meant:

None of his threads made sense to me. I can understand that a person could become a little apprehensive about re-starting meds after having had a bad experience, which is a great reason to come to these threads, in order to hear others' stories and get some moral support. The fact is that many people have an initial bad experience, especially with Atripla (and especially after starting with numbers in the danger zone, which can exacerbate side effects for many). That does not warrant wholesale rejection of the life saving benefits of ARV medications; it's the proverbial throwing the baby out with the bath water.  

On a gut level something about him just did not add up for me, which is why I stopped responding to his threads. To later learn that he frequents denialist forums made it all add up, all of a sudden the faulty logic and the obstinance he displayed made sense (hence the "hidden agenda").

He lives in the UK, where he has access to wonderful and free healthcare. It's just sad. And despite what you may think, Nestor, it's not a witch hunt or any form of attack. You should dial it down on the drama, sheesh.

 

 
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Moffie65 on April 17, 2010, 04:27:45 pm
Nestor. 

I have been HIV+ for 27 years.
I have been an HIV activist for 31.
I have been a member of this board for six years.
If by chance you would like to make everything I say into a confrontation; fine.  Your call.
If you would like to take over and eschew all of us who's patience with bullshit is really coming to a boil, then so be it.

Please take over.  Your shit is stinking pretty much right now and doesn't leave much room for those of us who have something of benifit for those of you who are new to this, but the litteral bullshit coming from people like you who don't have qualifications to doubt us, is really a bit too much for this tired 63 year old to deal with anymore.  Take over PLEASE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
(BUT DO YOUR HOMEWORK ON THE PLAGUE, BECAUSE YOU ARE NOT RIGHT ALL THE TIME!)
Screw it all.  I'm done.  Guess you will like not being called out by me anymore.  :)
Title: Re: For those of you who might be questioning HAART, or maybe when to start.
Post by: Dachshund on April 18, 2010, 08:39:28 am

If anyone is wondering why I go on about these things, it's because they kill this forum


Honey, believe me, no one is wondering about why you go on about these things. You're not the first to predict the forums demise. Fortunately or unfortunately, I guess it depends on how you look at it, with each new infection it will continue to thrive.