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Author Topic: For those of you who might be questioning HAART, or maybe when to start.  (Read 22477 times)

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Offline Moffie65

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  • Living POZ since 1983
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.   ;)
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline RapidRod

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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.

Offline Hellraiser

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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.

Offline Moffie65

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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.  :)
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline RapidRod

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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.  :)
;)

Offline emeraldize

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Thanks, Tim.

Offline aztecan

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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
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline BT65

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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.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline YaKaMein

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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
09/11 Endocrine Consult
08/11 CD4 328 14.9% VL 0
 Disc'd Bactrim DEXA -3.1 Tscore
03/11 CD4 338 14.7% VL 0
11/10 CD4 300 14.3% VL 0 <20copies
07/10 CD4 336 14.0% VL 0 DEXA -2.7 Tscore
03/10 CD4 308 13.4% VL 0 Vit D normal
01/10 Began FOTO
11/09 CD4 274 13.7% VL 0 Chol 173 Trig 131
07/09 CD4 324 13.5% VL 0 DEXA -3.1 Tscore lumbar
03/09 CD4 207 10.9% VL 0
11/08 CD4 227 10.3% VL 0 Chol 176 Trig 156
04/08 CD4 228 9.5% VL 0
01/08 CD4 194 9.0% VL 0
09/07 CD4 176 8.3% VL 0
03/07 CD4 130 9.5% VL 0 Chol 261  Trig 227
12/06 CD4 109 6.4% VL 0
09/06 CD4  88 5.5% VL und desens'd rtd to Bactrim
08/06  Began Atripla
07/06 CD4  59 5.0% VL 145 Chol 117 Trig 104
06/06  Bactrim rash, X2 Dapsone
 EFV & Truvada Chol 128 Trig 131
05/06 CD4  6 (2.0%) VL 78667 only V179D mutation Dx PC MAC

Offline tednlou2

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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?
« Last Edit: March 07, 2010, 02:23:24 AM by tednlou2 »

Offline veritas

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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

Offline Tim Horn

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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
« Last Edit: March 07, 2010, 07:55:12 AM by Tim Horn »

Offline Moffie65

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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.
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline bear60

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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
« Last Edit: March 07, 2010, 12:55:25 PM by bear60 »
Poz Bear Type in Philadelphia

Offline griezzel

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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.
« Last Edit: March 07, 2010, 05:11:57 PM by griezzel »

Offline Ann

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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.
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Moffie65

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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. 
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline griezzel

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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.
« Last Edit: March 07, 2010, 04:07:08 PM by griezzel »

Offline PeteNYNJ

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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.

Offline Miss Philicia

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

agreed
"I’ve slept with enough men to know that I’m not gay"

Offline griezzel

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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.
« Last Edit: March 07, 2010, 04:53:13 PM by griezzel »

Offline heartforyou

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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
Diagnosed in 1987 and still kicking
Viread, Kivexa (Epzicom),Viramune once daily

Happiness is the freedom of breathing fresh air every day.

Offline blackwingbear

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    • THE DARK MIND OF BLACKWINGBEAR
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.
It's all a sham. Politics is a big game, same as the media - and same as religion. The point is to distract & control. If we're looking at what they tell us is the "big issue", we're not looking at what they are doing. In time, there will be different causes and different minorities to pick-on. All in the name of keeping the system going, and the people distracted.

Offline tednlou2

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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. 


Offline buffaloboy

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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.

Offline RapidRod

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Quote
(by the way, aren't all infections 'opportunistic' in nature, whether one has HIV or not?).
NO..

Offline veritas

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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

Offline Miss Philicia

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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.  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?
« Last Edit: March 08, 2010, 08:46:53 AM by Miss Philicia »
"I’ve slept with enough men to know that I’m not gay"

Offline Jeff G

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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 .   

Offline buffaloboy

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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.


Offline Miss Philicia

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Don't take this in an insulting way either.  That's what acute anxiety is.
"I’ve slept with enough men to know that I’m not gay"

Offline buffaloboy

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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.
« Last Edit: March 08, 2010, 11:05:29 AM by buffaloboy »

Offline joemutt

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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.
« Last Edit: March 08, 2010, 10:42:31 AM by joemutt »

Offline buffaloboy

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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.

Offline Miss Philicia

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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.
"I’ve slept with enough men to know that I’m not gay"

Offline Hellraiser

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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.

Offline buffaloboy

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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.


Offline Joe K

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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.

Offline GSOgymrat

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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.

Offline buffaloboy

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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.

Offline buffaloboy

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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.

Offline Hellraiser

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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.

Offline pozniceguy

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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
remember the good times...honor the past but don't live there
Le stelle la notte sono grandie luminose, nel cuore profondo del Texas

Offline Tim Horn

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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.


Offline Joe K

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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.

Offline buffaloboy

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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.

Offline David_CA

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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.
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline Ravhyn

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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.
April 2006 - Sero-Conversion
December 2009 - Diagnosed
Jan 2010- VL 3,800 CD4 152
Summer 2010 VL UD, CD4 over 200
September 2010 VL UD, CD4 324
March 2011 VL UD, CD4 477
May 2011 VL UD, 338

Offline Hellraiser

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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.

Offline griezzel

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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'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?

 


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