Quantcast

Subscribe to:
POZ magazine
E-newsletters
Join POZ: Facebook MySpace Twitter Pinterest
Tumblr Google+ Flickr MySpace
POZ Personals
Sign In / Join
Username:
Password:
Welcome, Guest. Please login or register.
July 25, 2014, 04:01:11 AM

Login with username, password and session length


Members
Stats
  • Total Posts: 631821
  • Total Topics: 47833
  • Online Today: 293
  • Online Ever: 585
  • (January 07, 2014, 02:31:47 PM)
Users Online
Users: 3
Guests: 190
Total: 193

Welcome


Welcome to the POZ/AIDSmeds Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ/AIDSmeds community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: Am I in great danger?  (Read 10226 times)

0 Members and 1 Guest are viewing this topic.

Offline Matt39

  • Member
  • Posts: 179
Re: Am I in great danger?
« Reply #50 on: August 25, 2011, 05:32:36 PM »
I am completely aligned with this thought. 
Mike

Good for you. Thank goodness then that there different thoughts and that this forum is not really a hostage to a an Orwellian 'one truth', even if it sometimes appears like that. ;D

Offline newt

  • Member
  • Posts: 3,877
  • the one and original newt
Re: Am I in great danger?
« Reply #51 on: August 25, 2011, 05:40:05 PM »
Quote
One CD4 count of 360-70 on its own (even with a percentage of 15%) is statistically insignificant.

But clinically not perhaps, which is the point. CD4 of 15% is well under the recommended starting treatment threshold, and British guidelines are careful to point out the importance of bearing in mind mismatched CD4 count/CD4% figures.  I stick to my previous statement that I believe an immediate retest to check this is the real level, and if so talking about starting combination therapy ASAP, is a likely outcome. Clearly in the end it's up to the person concerned, and some will choose to wait, some to start. Me personally, with these numbers I would be looking to start ASAP, but not fretting too much about a few weeks travelling around the world.

- matt

Now playing: the rainy, cold weather forecast for Bank Holiday weekend
« Last Edit: August 25, 2011, 05:45:42 PM by newt »
"The object is to be a well patient, not a good patient"

Offline Matt39

  • Member
  • Posts: 179
Re: Am I in great danger?
« Reply #52 on: August 25, 2011, 06:04:24 PM »
But clinically not perhaps, which is the point. CD4 of 15% is well under the recommended starting treatment threshold...

Me personally, with these numbers I would be looking to start ASAP, but not fretting too much about a few weeks travelling around the world.

- matt


It's 13% or below -  it's plastered all over the walls of HIV clinics in the UK and on leaflets and magazines, so 15% is still above.

But I agree with your last sentence, if I was the OP I'd be calmly looking to see if those numbers were the same when I got back to my home city preparing myself for the decision that, if they were, I would be discussing a HAART start date and what combination I was prepared to start with.

Offline bocker3

  • Member
  • Posts: 3,358
  • You gotta enjoy life......
Re: Am I in great danger?
« Reply #53 on: August 25, 2011, 07:25:24 PM »
Good for you. Thank goodness then that there different thoughts and that this forum is not really a hostage to a an Orwellian 'one truth', even if it sometimes appears like that. ;D

You missed my point I think -- I was aligned with the thought that you only come in to specific threads -- namely those that you can try and talk someone out of starting HAART (while you pop your pills each and every day).

and............  your tired old whine about an "Orwellian one truth" simply doesn't hold up.  Many folks have differing opinions on when to start treatment.  The only thing being done here is countering your absurd notion that HAART is evil for others, but you will continue to take your own.  (cue:  here is where you throw out another name of some expert who you go to the pub with each night).

M
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline Rev. Moon

  • Member
  • Posts: 3,782
  • Smart ass faggot ©
Re: Am I in great danger?
« Reply #54 on: August 25, 2011, 07:34:59 PM »
cue:  here is where you throw out another name of some expert who you go to the pub with each night


No Mike, this is the point where he brings up the Nazis.  Cause that's what he does all the time, him and his tired line of thinking.  Like seriously, does this person think that he sounds clever just by throwing the word "Orwellian" in all of his argumentative replies?
"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

Offline John2038

  • Member
  • Posts: 1,529
  • Happiness is a journey, not a destination.
    • HIV Research News (Twitter)
Re: Am I in great danger?
« Reply #55 on: August 25, 2011, 09:42:13 PM »
Recommendations for initiation of therapy in naive HIV-infected patients

ē CD4 < 350: treatment recommended.
ē CD4 350-500:
-- Treatment recommended if hepatitis C coinfection, hepatitis B coinfection requiring therapy, HIV-associated nephropathy or other specific organ deficiency, age > 50, pregnancy or malignancy.
-- Treatment should be considered for viral load (VL) > 100'000 c/ml or high cardiovascular risk


http://www.europeanaidsclinicalsociety.org/index.php?option=com_content&view=article&id=59&Itemid=41

In conclusion:
Accordingly to the latest EACS above, for patients with VL > 100'000 c/ml, treatment is recommended (as much as they are for patients with CD4 < 350).
In more, CD4% < 14 means AIDS, and most of the Guidelines worldwide would recommend starting a treatment as well.

Also, taking into account:

  • Accumulating data from observational cohort analyses suggest benefits to starting when CD4+ cell counts 350-500 cells/mm3
    • Survival benefit
    • Fewer AIDS-defining events
  • NA-ACCORD data suggest survival benefit of starting ART at even higher CD4+ cell counts (> 500 cells/mm3)

ART CC: Analysis of 15 cohorts from US and Europe (ART Cohort Collaboration) (N = 24,444)

ComparisonHR (95% CI)
1-100 vs 101-2003.35 (2.99-3.75)
101-200 vs 201-3002.21 (1.91-2.56)
201-300 vs 301-4001.34 (1.12-1.61)
251-350 vs 351-4501.28 (1.04-1.57)
351-450 vs 451-5500.99 (0.76-1.29)

Source: Sterne J, et al. CROI 2009. Abstract 72LB

Another interesting study highlight the benefit staying with CD4 > 500.
  • Overall mortality in HIV-infected patients 7-fold higher than general population
  • After 6th year of follow-up, mortality among patients with CD4+ cell counts ≥ 500 cells/mm3 comparable to that of the general population

Source: Lewden C, et al. J Acquir Immune Defic Syndr. 2007;46:72-77


Based on that, his counts and in particular VL, it is obvious canadiandesperate should start a treatment.
He got also 28% more chance of getting AD compared to pts starting at >450.
No needs to add the others recents studies suggesting the earlier the better, nor those highlightinh others benefits in terms of lower side effects, better immune recovery, and so.

Note:
International HIV Care, Treatment, and Prevention Guidelines
http://hivinsite.ucsf.edu/global?page=cr-00-04

Offline newt

  • Member
  • Posts: 3,877
  • the one and original newt
Re: Am I in great danger?
« Reply #56 on: August 25, 2011, 11:08:25 PM »
Quote
It's 13% or below

Is what UK guidelines say (<14% etc to quote) ... indeed, but it's a rough guide not an absolute figure, and if my doc was not vigilant at a CD4% of 15 I'd be kicking his ass in the Thames, this is more or less the threshold for a high risk of PCP << a life-threatening condition, so 12, 13, 14, 15%, it's a moot point. Now tell me, which doc in the world is gonna fret about +1-2% on a CD4%? Erm none I want to be treated with. Erm none, in short. Rest my case. Can we get back to the OP's point now?

- matt
"The object is to be a well patient, not a good patient"

Offline canadiandesperate

  • Member
  • Posts: 12
Re: Am I in great danger?
« Reply #57 on: August 26, 2011, 05:50:48 AM »
Thank you all for your opinion and some fact, the good and the bad one. Forum and my presence here is all about that and I read and analyse every of your messages, even if I donít understand everything because of language barrier.

First, Iím little bit under 40, no heart problem known, no hep A or B, last time I was check no Hep C but yesterday I do a lot of STD (so hep C) test and another CD4 test. I still donít have the result yet but suppose to be tomorrow.

I know I have to relax because stress is not good for me. So even the person whoís talking and say itís best to  start meds near or over 500 itís too late for me anyway. And for the little I know about meds, lot of meds and long time meds damage your liver (like every other kind of meds) and your heart. So maybe starting earlier is better for some fact and not good for other fact like killing your liver and your heart. This is why there is two different approach in the professional field. Yes maybe some donít care about damaging your liver and your heart and just want you to take more pill$ for long time. At my point, I donít really care about the fuc**** gimmick of the Pharm company and the very sceptical FDA, lobbying and stuff like that, I know I have to start meds ASAP. Like I said before, if I was in Canada right now, I will start right away. Iím ready and no more denial for me like in the first 6 month of the news that I learn because I infected a nice girl and mother of 3 child and learning with that fact that I was infected by another nice girl Iíve known for many years who did not know at that time. A kind of shock yes! And have to tell 4 other girls they may be infected because of me and wait for the result with them. A real nightmare! Even with my ďdenialĒ at the beginning that itís not possible that shit happen to us (especially the mother of 3 Iíve infected) I still tell those 4 girls right away face to face 1 at a time, 1 by a day because itís was too hard. Thank god no more was infected but a long 4 weeks and for another 2 months of waiting. The fact that I didnít want to enter in the healthcare system in Quebec have nothing to do with denial. Itís for professional and personnel reasons, a couple of them still there but no more of an issue at my point.

Yesterday I change my flight and Iím going back in 4 weeks instead of 6. It was the better I can get under 500$ penalty fee cause sooner was 2000$! And also my job will be done at that time, so no very big stress about inventing a reason to my boss for comeback earlier. I didnít want to start my meds here for a couple of reason (donít have all the meds so cannot give me the choice), donít want to have side effects in Indonesia where I really donít want to be treated. So I will see a doctor in Quebec as soon as I comeback and start in the doctor office if I can! ;) Now you just have to wish me luck that nothing happen before I got back in 4 weeks and please stop talking about the disease Iím risking to catch and die because it will not help my situation. I will be glad then to salute you all and share what kind of meds Iím on and try to get back on normal life again when I get back in Quebec. And I donít care about taking meds every day (if I donít have side effects) that remind me I have that shit in my body because I already think about it every single day and especially think about the girl I infected. So I think that denial is far behind now but psychological issue maybe not but I will seek for help in Quebec too at the same time.

Thank you all, I will share my result as soon as I got it.   

Offline Ann

  • Administrator
  • Member
  • Posts: 28,134
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Am I in great danger?
« Reply #58 on: August 26, 2011, 07:42:47 AM »
What some people seem to be forgetting is the OP's high viral load. He reported that last year, it was 572,331 and this year it was 758,165. If he were very newly infected that number wouldn't worry me so much, but he's been poz for a few years now.

To me, it is no surprise that he had such a drop in CD4s, particularly that drop in CD4% - due to the high VL. That is why, in this case, I have suggested that his numbers do indicate the need to start treatment.

In the past year or two I have had several "when to start" discussions with several different doctors at my clinic in Liverpool. I feel it is safe to say they would all agree that the OP's numbers do indicate the need to start treatment, sooner rather than later. I know that high viral load and drop in CD4% would definitely have me clamouring to start.

From my recent discussions, I also believe that starting with his numbers as they are (ie high VL and low CD4%) would be totally acceptable from the point of view of the BHIVA. (British HIV Association)
Condoms are a girl's best friend

Condom and Lube Info  



"...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 Matt39

  • Member
  • Posts: 179
Re: Am I in great danger?
« Reply #59 on: August 26, 2011, 10:15:36 AM »
Thank you all for your opinion and some fact, the good and the bad one. Forum and my presence here is all about that and I read and analyse every of your messages, even if I donít understand everything because of language barrier.

First, Iím little bit under 40, no heart problem known, no hep A or B, last time I was check no Hep C but yesterday I do a lot of STD (so hep C) test and another CD4 test. I still donít have the result yet but suppose to be tomorrow.

I know I have to relax because stress is not good for me. So even the person whoís talking and say itís best to  start meds near or over 500 itís too late for me anyway. And for the little I know about meds, lot of meds and long time meds damage your liver (like every other kind of meds) and your heart. So maybe starting earlier is better for some fact and not good for other fact like killing your liver and your heart. This is why there is two different approach in the professional field. Yes maybe some donít care about damaging your liver and your heart and just want you to take more pill$ for long time. At my point, I donít really care about the fuc**** gimmick of the Pharm company and the very sceptical FDA, lobbying and stuff like that, I know I have to start meds ASAP. Like I said before, if I was in Canada right now, I will start right away. Iím ready and no more denial for me like in the first 6 month of the news that I learn because I infected a nice girl and mother of 3 child and learning with that fact that I was infected by another nice girl Iíve known for many years who did not know at that time. A kind of shock yes! And have to tell 4 other girls they may be infected because of me and wait for the result with them. A real nightmare! Even with my ďdenialĒ at the beginning that itís not possible that shit happen to us (especially the mother of 3 Iíve infected) I still tell those 4 girls right away face to face 1 at a time, 1 by a day because itís was too hard. Thank god no more was infected but a long 4 weeks and for another 2 months of waiting. The fact that I didnít want to enter in the healthcare system in Quebec have nothing to do with denial. Itís for professional and personnel reasons, a couple of them still there but no more of an issue at my point.

Yesterday I change my flight and Iím going back in 4 weeks instead of 6. It was the better I can get under 500$ penalty fee cause sooner was 2000$! And also my job will be done at that time, so no very big stress about inventing a reason to my boss for comeback earlier. I didnít want to start my meds here for a couple of reason (donít have all the meds so cannot give me the choice), donít want to have side effects in Indonesia where I really donít want to be treated. So I will see a doctor in Quebec as soon as I comeback and start in the doctor office if I can! ;) Now you just have to wish me luck that nothing happen before I got back in 4 weeks and please stop talking about the disease Iím risking to catch and die because it will not help my situation. I will be glad then to salute you all and share what kind of meds Iím on and try to get back on normal life again when I get back in Quebec. And I donít care about taking meds every day (if I donít have side effects) that remind me I have that shit in my body because I already think about it every single day and especially think about the girl I infected. So I think that denial is far behind now but psychological issue maybe not but I will seek for help in Quebec too at the same time.

Thank you all, I will share my result as soon as I got it.   



I think your post above is exceptionally well thought out, realistic and sensible and I am sure when you return to Canada, you can sit down with a specialist get retested and decide what regimen to begin with.
One thing I would urge you to ask your HIV Specialist to do, is include a test for your Vitamin D level 50ug or above being what it should be, and have a bone mineral density scan (Dexa scan) to use as a baseline to monitor once you are on HAART, since in men our age this is particularly important. It should be automatic and with some HIV Specialists it is but for some not, so a gentle nudge to him/her is worth it. You can read the articles by Sean Strub here on poz.com for more information on that.

I wish you all the very best of luck.

Offline canadiandesperate

  • Member
  • Posts: 12
Re: Am I in great danger?
« Reply #60 on: August 26, 2011, 10:55:21 AM »
Thank you Ann for your concern. I know it's true what you write and I also know that my CD4 will continu to drop because of my high level of VL. The doc here already told me. The only thing I can do from now on, is to hope that everything will be fine for me the next 4 weeks. By the way, I love your avatar!  :D

Thank you Matt39, I will.

Offline mecch

  • Member
  • Posts: 11,224
  • red pill? or blue pill?
Re: Am I in great danger?
« Reply #61 on: August 26, 2011, 05:00:50 PM »
I am glad that it has been a few years now that you have been getting labs.

The semi-denial I was thinking of is not that you were in denial that you were HIV+.   Instead, what I noticed was that you were not ready to face few things one can't avoid if one is HIV+.  Accepting it, living with it, and fighting the virus appropriately.

You have expressed SO many anxieties in this thread about your situation, both in these days (maybe a ďgreat dangerĒ for health, losing job, being deported, etc) but also in the 4 years since your seroconversion.

The way you report your seroconverison itself is not clear.  First it seems like you AND the medical system didnít even find out you were seroconverting when it happened.  I think this surely happens sometimes with heterosexuals!  

But then I got confused -- because you said you were worried about just one girl (woman you might say) for a risk.  But later in the thread, it becomes clear there was one woman who infected you, and then you passed it to another woman, out of 5 total woman, besides the (6th, therefore) who passed it to you.  (4 did not get it.  Good!)

So then you explain that yes, you were in denial for about 6 months after the seroconversion.  Continuing to have unsafesex I guess.  Did you even have your diagnosis at that time?

But, you did some good things too, which show you were not in denial eventually, about being HIV+.  You disclosed to your partners who were at risk.  That was the right and mature thing to do.  

By the way, eventually you may consider that HIV is a virus with no morals!  

You are not ďresponsibleĒ for the woman who got it from you, at least not fully.  

All 6 woman, and you, were having unsafe sex and making assumptions about the lack of HIV risk, and that was naÔve and ignorant of each person.  

And each person is responsible for the decisions he/she makes, and for his or her own naivetť about HIV in the heterosexual world.   So I hope in the future this becomes less of a burden for you.  You only have to worry about your own actions.  

SO, then over the 4 years, while you knew you were HIV+, there was a lot of anxiety about being HIV+ and how it will effect your LOVE LIFE; and your job, and how to enter the medical system.

You seemed to think a love life was not possible being HIV+ and a passionate straight man.  But listen, its probably true that your pool of potential partners has gone down, but really, the same thing happens for gay men. And straight or gay women. HIV+ people are all in the same boat for this downside of being +.  Some people just don't want us.  Look on the bright side however.  Based on the sexual success your report, you must be a charmer and a good looker, so you have that still!  I have a good friend since childhood, in our teens, she became VERY "striking" and not really what the average US teenboy wanted in a girl.  This lasted a good 15 years. Her pool of dating was much lower than mine.  

Everyone has advantages and disadvantages in the dating game.  Even the advantages can be a drag.  I know an handsome smart young man from a billionaire family and so many of the women he meets, they treat him as a potential bank account.  I knew this gorgeous girl in college, every time we went to a disco, the handsome guys were intimidated but EVERY average schmuck in the room for some reason thought he had a chance and would go for it.  By the way, she ended up with a very charming successful but dumpy average looking guy.

Secondly, you seemed almost to say that being in the medical system was a way that your status was going to be known Ė cause you know nurses and so on, and thus gossip would be a way of you losing control of your privacy, and also hurting your dating pool.   How much this is true I canít tell Ė surely itís a risk and we have heard such stories in this forum.  Maybe you are part of a special community where everyone knows everyone so word travels fast?  

But that doesnít matter, eventually, as you see now.  Health comes first, and you deal with the stigmas and discrimination, when they might arise.  Otherwise you die.

Then several times your repeated about the hope for a cure to save you from ďreally being HIV+Ē in my words, as if the miracle might come along and the nightmare would be over for you.  Back in business.   This was wishful immature thinking.  Its good that now you realize that its not going to happen in time for you to avoid HAART.  

You can still be hopeful for a cure, but these things move slowly, we are 25+ years into the epidemic.

You have some displacement of the fears about the reality of living with HIV onto fears/beliefs about PHARMA industry, and about the medicine.  And some ignorance about the ability of supplements to fight various diseases.  

So that is another reason, reading between the lines, I suggested you are coming out of a period of some denial about the basic facts of HIV.

The basic facts about HIV are

1) that it is a virus, and it has no morals.  The stigma and discrimination that comes to those who are HIV+ - this is very real but it based on beliefs, ignorance and morality of people expressing the stigma and enacting the discrimination.  There are in fact other STD Ė sexually transmittable diseases, that have very little ENDURING impact as regards stigma and discrimination for people who have had them.   Gee, do you think anyone cares who has had a case of the ďclapĒ sometime in their lives.   Or anal warts?  

You are not a bad person for being HIV+.  Love and relationships are possible for HIV+ people.  

OK the dating pool may be a bit trickier.  

Disclosure or not, and the resulting stigma or discrimination, these are maybe bigger challenges for an HIV+ person than the medical ones.

At least for someone who is a relatively recent infection.  Has known since seroconversion.  And can live in a country where there is good and affordable healthcare.  

YOU need to find strength that YOU are in that category of very fortunate people with HIV.

2)  HIV progresses to AIDS mostly because of genetics.  There are no proven effective supplements.  No diet.  No psychological lifestyle.  No spiritual beliefs.  Trust on this.  

We in the over 40 club Ė many of us saw almost everyone HIV+ eventually die, in the 80s or 90ís except a select few.  And for the select few, there was no particular ACTION they took to survive, it was because of genetics Ė very slow progressors, or maybe because one or two made it , while quite sick, to early drugs which in fact did NOT kill them, like the drugs did, yes, poison others, etc etc.    

3)  Start learning about HAART therapy as it exists TODAY.  Be very careful reading about HAART or listening to peoples experiences with HAART Ė if the information about HAART is about for from the 90ís, or even HAART in 2000.  This does NOT speak to the experience you are going to have, treated in Canada.

HAART is not poison.  Regarding number 2 (genetics) Ė HAART is the only action an HIV+ person can take that stops progression to AIDS when a person is progressing to AIDS.   Nothing else.  Only option.  

Wishing you well.  
« Last Edit: August 26, 2011, 05:36:01 PM by mecch »
ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Offline Matt39

  • Member
  • Posts: 179
Re: Am I in great danger?
« Reply #62 on: August 27, 2011, 03:55:53 AM »
You have some displacement of the fears about the reality of living with HIV onto fears/beliefs about PHARMA industry, and about the medicine.  And some ignorance about the ability of supplements to fight various diseases.  

1. Several double-blind placebo controlled randomized scientific clinical trials involving both probiotic and prebiotic supplementation over the past ten years have shown restriction in decline and elevated CD4 counts in HIV+ people, independent of HAART, especially the 'BITE' trial in late autumn 2010 - these trials and links have already been posted several times in threads in the 'Nutrition' forum here

2. Deficiencies in Selenium, Glutathione and Vitamin D have been proven - in scientific clinical trials - to have a bearing on illness in HIV+ people and have been clinically and scientifically proven to be a reliable predictor of ill-health, independent of HAART.
Pharmaceutical grade supplements, under medical supervision, of Selenium and Vitamin D (where deficiency is proven by test) have been proven in clinical trials to improve immune performance, independent of HAART.
IV Glutathione under medical supervision, or oral supplementation of Gluthathione precursors (N Acetyl Cysteine, Alpha Lipoic Acid, Undenatured Whey Protein) have been clinically proven - in HIV+ people - to enhance the body's capacity to create Glutathione and restore it to optimum levels, as the body creates less as we age even in the HIV Neg - Glutathione is the most powerful anti-oxidant known to man. Oxidative stress (ie oxidation) is one of the most well known and serious clinically proven reasons for ill-health and  immune suppression, independent of HAART.

In fact, it has been clinically proven, that the above actions go a long way to guarding against many of the long term side effects of HAART, such as bone mineral density loss and liver and kidney dysfunction and cardio vascular disease.
This is especially important since Liver failure is the biggest single cause of death in HIV+ people on HAART, closely followed by heart failure - the number who actually die of 'AIDS-defining illnesses' is tiny by comparison.

Some references:

Low Vitamin D Levels Associated With Serious HIV Disease Progression:
http://www.aidsmeds.com/articles/hiv_vitamind_heart_1667_20373.shtml
BITE Trial on prebiotic supplementation in HIV+ people to restore optimum Gut Function and immune enhancement:
http://www.natap.org/2011/CROI/croi_78.htm
Administration of N-acetylcysteine (NAC) to replenish glutathione (GSA) deficiency, improves T-cell function and blocks HIV expression in vitro.
http://www.medibolics.com/NAC-GSH.htm
Quote: "N-acetyl cysteine is one of the dietary supplements that those HIV(+) people in the know have been taking for a dozen or more years"
N-acetylcysteine replenishes glutathione in HIV infection:
http://www.ncbi.nlm.nih.gov/pubmed/11029607
« Last Edit: August 27, 2011, 04:01:35 AM by Matt39 »

Offline John2038

  • Member
  • Posts: 1,529
  • Happiness is a journey, not a destination.
    • HIV Research News (Twitter)
Re: Am I in great danger?
« Reply #63 on: August 27, 2011, 04:39:09 AM »
The priority here would be HAART. What is your point recommending supplements and suggesting HAART isn't needed yet, with such VL and borderlines counts? HAART + some supplements if fine. Not just supplements.

Offline Matt39

  • Member
  • Posts: 179
Re: Am I in great danger?
« Reply #64 on: August 27, 2011, 04:46:04 AM »
The priority here would be HAART. What is your point recommending supplements and suggesting HAART isn't needed yet, with such VL and borderlines counts? HAART + some supplements if fine. Not just supplements.

Open your eyes. I never suggested any supplements or even alone because if you read carefully it says 'where deficiency is proven (to exist) by test'. I was responding to someone's else's post. And if you read my post with any real effort, you will find I comment on supplements while on HAART. You will also find all my referenced links are OFFICIAL HIV RESEARCH links.
And if you scroll up a couple of posts before you'll I see agree with the OP discussing starting HAART with his Canadian specialist.
It is always better to read your post before hitting 'submit' - if you had done that you could have avoided your multiple inaccuracies.
Good luck

Offline John2038

  • Member
  • Posts: 1,529
  • Happiness is a journey, not a destination.
    • HIV Research News (Twitter)
Re: Am I in great danger?
« Reply #65 on: August 27, 2011, 05:15:58 AM »
Not true at all. That is the point of the 'START' trials.
Not a single European country guidelines currently recommend treatment above a CD4 cell count of 350, unless the person also has a consistent CD4 % below 14% (21% is not borderline in their guidelines) *or* they are also co-infected with Hep B or C for which they are also being recommended treatment, *or* they are over 50 and have indications of a disposition to Cardio Vascular Disease, *or* they are experiencing ill-health with OIs.

So if Canadiandesperate was anywhere in Europe, he would be being monitored carefully and advised that if his current numbers drop any further over at least two testing cycles (6 months) he would be recommended to start HAART, and should now prepare himself for that possibility.
Unless he met the other criteria (Hep B/C, actual ill-health, Cardiovascular dispositions or age) he would not be recommended to start but would be offered the *option* to start straight away *if* he so wished..

Here you haven't mention the VL, which lead to recommending initiating HAART in the EACS.
Maybe you would like to read the recommendations carefully before providing others with your own recommendations. You can rephrase or reconsider later on, everybody make mistakes, but then being assertive is not serving you weill.
I'm not shouting at you at all. Yeah, it may seems, but its not my intend. I just wishes you to be more open to others opinions so that we keep a good spirit in this forum.
Still, the counts of canadiandesperate strongly suggest starting HAART. And the sooner the better. And even much earlier (<500)  accordingly the the US Guidelines. But guidelines are not all. And only an ID doc will make the rights recommendations.

Best n peace

Offline Matt39

  • Member
  • Posts: 179
Re: Am I in great danger?
« Reply #66 on: August 27, 2011, 05:20:49 AM »
Still, the counts of canadiandesperate strongly suggest starting HAART.

John

I have read many of your posts to try and get an understanding of where you are coming from and why you have completely misread my previous post in response to mecch.
I have come to the conclusion that you are an HIV Science obsessive, don't really understand it, and that, along with English not being your native language, has made you misread posts and respond in an inaccurate way.
If you can't go back and re-read my posts where I *agree* that the OP should discuss starting HAART, then just don't reply at all.

Good luck

Offline John2038

  • Member
  • Posts: 1,529
  • Happiness is a journey, not a destination.
    • HIV Research News (Twitter)
Re: Am I in great danger?
« Reply #67 on: August 27, 2011, 05:40:40 AM »
It's about the duality of your posts. Nevermind.

Note: I still think you shouldn't try to be assertive (nor now to rule), but to be constructive.

I hopes we will have nice conversations in this forum.

Offline buginme2

  • Member
  • Posts: 2,834
Re: Am I in great danger?
« Reply #68 on: August 27, 2011, 06:36:02 AM »
The OP already said he was going to seek treatment in canada shortly so he will most likely be started on meds straight away.  Especially since much of Canada has as strict or even more strict treatment guidelines as the US.'

Matt, what comes across to me is that you often times seem to advocate for delaying treatment.  You quote studies and ask people to read blogs by Sean Strub (who also advocates that people delay treatment and often speaks of the dangers of haart).  If that is your position thats fine, just say so.  You have a right to beleive that.  I would only ask that you consider that many people do not share your view (most probably don't).  Your posts do seem aggressive in their attempt to get others to follow your line of thinking.   That may be what John is trying to say. Dismissing him as being HIV science obsessive and not understanding english doesnt hold water.

Offline Matt39

  • Member
  • Posts: 179
Re: Am I in great danger?
« Reply #69 on: August 27, 2011, 06:46:17 AM »
Dismissing him as being HIV science obsessive and not understanding english doesnt hold water.

Actually it does because John is obsessive, doesn't read english well at all (my own posts are very clear supporting the OP in starting HAART when he returns to Canada if his numbers are the same), and there are multiple posts in reply to him going back 3 years saying exactly the same thing.
As for the co-founder of Poz Magazine Sean Strub's blog - he is a long termer with a wealth of *actual* experience (contrary to many here who post on HAART without *any* experience of it) - he has a contribution that is valid and widely respected, and a lot more than many others.
Sean Strub also happens to believe that many posts here that twist an 'opinion' into being attacked as something that is 'aggressive' (like yours) are negative and counter productive.

Good luck

Offline mecch

  • Member
  • Posts: 11,224
  • red pill? or blue pill?
Re: Am I in great danger?
« Reply #70 on: August 27, 2011, 09:25:41 AM »
Sean Strub also happens to believe that many posts here that twist an 'opinion' into being attacked as something that is 'aggressive' (like yours) are negative and counter productive.

Good luck

Matt39 your appearance and contribution to this thread just shows everyone that certain of us have your M.o. -  which we feel is counterproductive, somehow, in the end, in precise situations a particular OP is experiencing.  

It may also prove that you know that we have this opinion and that you are looking for arguments with members, above and beyond (what you claim is) helping an OP (but I for one think is messing with an OP).   You'll say something clearly reasonable, and argue how can we ignore that, or you'll say something really counterproductive to the OP, with a cleverly timed walk back so you can show a bit later on you didn't really say what you said before you walked it back.  

Also, in every thread, a few people who do engage with your rabbit hole rhetoric,  will earn the superior and queeny "final dismissal" (which is also a kind of flame-bait).   In fact each apparition feels like meta flamebait to forum members and a maybe cruel, always somehow counterproductive lure to the OPs.

Perhaps you don't realise your M.o.  I had to laugh twice at your misread of Bocker.  Once because it showed your delusion and a second time cause of the little irony that Bocker and I hardly ever see eye to eye but can agree on your M.o.

Also i feel dirty and like a jerk for calling you out in this thread.  Someone will do it cause we want newbies in general or an OP to see your agenda, the context -- as they are beginning to  educate themselves about the role medical care and research-based science will have to play in their OWN lives, living with HIV.    Slimed by you because yes, eventually other members will chime in when one of us calls out your M.o, so there will be flamebaiting and you'll capture energy that little us of want to give you.  Jerky because it leads to hijacks, confuses people, leads to meta-conversations not everyone can follow, least of all newbies and often times the OP.   Ick.  Ew.
« Last Edit: August 27, 2011, 09:30:33 AM by mecch »
ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Offline bocker3

  • Member
  • Posts: 3,358
  • You gotta enjoy life......
Re: Am I in great danger?
« Reply #71 on: August 27, 2011, 10:19:46 AM »
Perhaps you don't realise your M.o.  I had to laugh twice at your misread of Bocker.  Once because it showed your delusion and a second time cause of the little irony that Bocker and I hardly ever see eye to eye but can agree on your M.o.

And what happens the week that I agree with you -- first an 5.8 earthquake and now a hurricane raging outside.   ;D

Seriously though -- most people "get" Matt39's angle.  The unfortunate thing is that he tends to prey on the vulnerable by jumping into threads where folks are on the fence.  Plus, while he is sure to drop a name of some "illuminary in the field", he rarely ever mentions the fact that he takes his HAART everyday -- nor have I ever seen at what point he decided to start.  But then, these "facts" wouldn't help his pot stirring.

Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline AnnieInBC

  • Member
  • Posts: 8
Re: Am I in great danger?
« Reply #72 on: August 27, 2011, 03:05:03 PM »
Hi canadiandesperate

I hope everything goes fine for you when you get back to Canada and you can find some calm time to organise yourself, find a Doc and service you trust and when they test you again, make your decision with all the information, including that provided here. I have been through the same so I can empathise with what you are going through.

I have been reading here for a long time but never registered to post before. But I felt compelled to do that today because I have been shocked by the manner of some. There are posts here by people who clearly wanted to give you support and consideration and information, whatever 'side' they came down on. But there are also those who seem to take pleasure (or just angst and defensiveness) in attacking someone who wanted to give you a view that these others simply don't like, and so they attributed motivations and intent to matt39 that seemed to me simply unwarranted. I don't think people who are so quick to 'attack' are the ones best placed to give advice. I certainly would stop reading them the moment I read such vitriol.
I hope you are able to take a more considered view of the all the information you have.

Good luck

Annie x

Offline Sean Strub

  • Member
  • Posts: 13
Re: Am I in great danger?
« Reply #73 on: November 03, 2011, 12:22:04 PM »
I'm a bit late to this conversation, but since my name has been mentioned, I thought I would clarify a few things about my own views.

I don't advocate delaying treatment as a general rule; that is an individual decision that is informed by many different factors.  I waited to start treatment longer than most of the recognized experts would have thought was appropriate.  My decision to delay was an informed one and one I do not regret.  Informed is the operative word.

I do think some people are on treatment who probably do not need to be on treatment and I think some people are on more treatment than is necessary to achieve suppression of the virus to undetectable levels.  At present I am on a regimen that most clinicians and treatment experts would consider inadequate.  For the last several years I have taken 400 mg of Prezista and 100 mg of Norvir once a day.  That is significantly less than the recommended dosage of Prezista, but it has been effective for me and has kept me undetectable.

I am alive because I take anti-retroviral therapy.   I am also alive because I refused to take it when it was first prescribed for me and I was able to minimize accumulated toxicities and avoid the resistance that so frequently resulted from mono or duo therapy.  My experience is that cumulative side effects, over time, are almost always worse than what is required on the prescribing indication when a drug is initially approved. 

While the newer drugs and regimens are more effective and generally less toxic than the worst of the old ones, many people will still develop very serious side effects from therapy, including many people who are just commencing therapy today.  We know more about these side effects than ever before, but there is an ocean of knowledge we don't yet have and it is clear that there are side effects that don't show up for years and years, decades even, after one commences therapy. 

I have about half the bone density that I should have, for someone my age and gender.  Bone loss is multi-factorial, but I am certain one of the major factors in my bone loss was taking Viread (and too much of it) for five or six years.  Other HIV meds, maybe even most of them, are also demineralizers, but the evidence is most damning to Viread's role.

There is a phenomenon in discussing treatment strategies that too often boils down to people believing their own position is the only correct one.  I've been positive for more than three decades.  Like many on this site, I've known hundreds of people who have died and hundreds who have survived.  I have seen many, many, many different paths to survival, including some unorthodox ones.  The most successful survivors, in my experience, are those who become very well-informed, remain skeptical and are constantly listening to and learning from others who have HIV. 

Whenever anyone gets overly argumentative about a treatment strategy, or starts attacking the motives of another person with HIV in discussing treatment strategies, I tend to turn off.  Widely accepted conventional wisdoms about AIDS often are shaped by priorities other than the best interests of people with HIV.  Sometimes those conventional wisdoms get turned on their head.  Other people with HIV--including those with whom I've disagreed--have been the best source of information for me in learning how to manage HIV.  That has always been the case, since the first days of the epidemic, and remains so today, at least it does so for me. 

I disagree with those who claim that supplements, lifestyle issues, diet, faith, etc., have nothing to do with progression of the disease.  In the individual situations I have been most intimately familiar with, those non-pharmaceutical therapies or coping strategies or whatever one wants to call them have often been extremely important and have played a significant role in delaying progression of the disease, mitigating side effects of anti-retroviral therapy and/or improving quality of life. 

Finally, I hope posters will be more generous to those who point out the downsides of anti-retroviral therapy or who are skeptical of early treatment.  I don't know about his posts on other threads, but the poster (Matt39) who was accused of "preying" on newbies with his skepticism about early treatment I thought was characterized unfairly. 

I didn't find his posts on this thread to be the least bit inappropriate and I agreed with almost everything he said.  People who are considering treatment need to understand the breadth of opinion and experience those of us with HIV have had with treatment, side effects, etc. 

Good luck to the OP; you've gotten a lot of good information in this thread and it sounds like you're going about your own treatment decision making in a smart way.



Offline Miss Philicia

  • Member
  • Posts: 23,880
  • celebrity poster, faker & poser
Re: Am I in great danger?
« Reply #74 on: November 03, 2011, 12:37:48 PM »

Finally, I hope posters will be more generous to those who point out the downsides of anti-retroviral therapy or who are skeptical of early treatment.  I don't know about his posts on other threads, but the poster (Matt39) who was accused of "preying" on newbies with his skepticism about early treatment I thought was characterized unfairly. 

I didn't find his posts on this thread to be the least bit inappropriate and I agreed with almost everything he said.  People who are considering treatment need to understand the breadth of opinion and experience those of us with HIV have had with treatment, side effects, etc. 


That's all well and good, but fyi matt39 was banned by the moderators for trolling this forum under a handful of user names, including putting forward AIDS denialist postings.
"Iíve slept with enough men to know that Iím not gay"

Offline Ann

  • Administrator
  • Member
  • Posts: 28,134
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Am I in great danger?
« Reply #75 on: November 03, 2011, 12:55:29 PM »
Sean, Matt39 and his sockpuppets AnnieinBC and Rizdaddy have all been banned. He showed his denialist colours in technicolor glory as Rizdaddy, but you won't be able to see those posts as they are in the bin. Let's just say he a fan of a certain documentary produced by voracious denialists. It's a shame he uses your name to try to give credence to his ludicrous, mistaken and downright dangerous beliefs. In true denialist style, he twists, cherry-picks, misrepresents and takes facts out of context to try to dissuade people from taking meds at all.
Condoms are a girl's best friend

Condom and Lube Info  



"...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 jkinatl2

  • Member
  • Posts: 6,007
  • Doo. Dah. Dipp-ity.
Re: Am I in great danger?
« Reply #76 on: November 03, 2011, 03:49:50 PM »
Sean, Matt39 and his sockpuppets AnnieinBC and Rizdaddy have all been banned. He showed his denialist colours in technicolor glory as Rizdaddy, but you won't be able to see those posts as they are in the bin. Let's just say he a fan of a certain documentary produced by voracious denialists. It's a shame he uses your name to try to give credence to his ludicrous, mistaken and downright dangerous beliefs. In true denialist style, he twists, cherry-picks, misrepresents and takes facts out of context to try to dissuade people from taking meds at all.

At the risk of offending Mr. Strub, I suggest that we collectively handled that poster - and handle those like him - VERY generously, considering the thinly veiled murder they attempt.

We ARE skeptical. Of Orthodoxy, of Big Pharma, of untested treatment, of treatment strategy. Were Mr. Strub to follow our conversations, he would know this. Had Mr Strub followed our history with the banned poster - or even inquired to one of the moderators in private before posting his message here - he might have had some illumination.

If he believes in the dissenter's place at the AIDSMEDS table, perhaps he could loosen the rules of the forum and allow denialist viewponts.

Of course if that happens, I wager most of us who believe in first tiered peer-reviewed science would be outta here (after the ensuing flamewars) - but then again, we are not the target audience for the denialists, are we?

As a LTS, I strongly resent the implication that I or any other poster with treatment experience has in any way downplayed the risks and side effects associated with HAART.





"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline Sean Strub

  • Member
  • Posts: 13
Re: Am I in great danger?
« Reply #77 on: November 10, 2011, 01:25:08 PM »
 I specifically pointed out that I don't know anything about the person's posts in other threads, because I didn't want to make a blanket statement about someone's posts.  Butt in terms of his/her posts on this thread I didn't find them inappropriate.

And to jkinatl2, I am sorry you took as personal criticism my suggestion that posters be more generous to those who alert people to risks or are more treatment skeptical.   jkinatl2 is correct, I didn't research the poster's history on other strings, nor did I contact a moderator to inquire about the poster prior to putting up my comment.  If that is expected prior to one posting, then I misunderstand the purpose of this board.  I was simply responding to what the poster had put up on this string.

It is ironic, but I think the denialist movement has actually, in a perverse way, hindered the discussion about treatment side effects rather than expanded it.  There are many different kinds of treatment activism and many treatment activists or advocates or whatever who tend to focus within a narrow area that interests them or where they have expertise, whether it be access, emerging therapies, categories of treatment, side effects or whatever. 

But those who talk a lot about side effects or over-treatment or are seen as "too critical" of treatment as prevention or are otherwise generally a bit more treatment-reluctant than others, have sometimes been maligned or accused or suspected of being against treatment entirely or secret denialists or similar kinds of garbage.  Our community's conversation in that arena is, in my opinion, not as robust as I believe it should be.

In that sense, one could even argue that the denialist movement has served pharma much better than it has served people with HIV.

Offline bocker3

  • Member
  • Posts: 3,358
  • You gotta enjoy life......
Re: Am I in great danger?
« Reply #78 on: November 12, 2011, 09:48:58 AM »
Sean,

The twists and turns of this thread have gotten me thinking.........

While I think you are quite correct that folks should be open to listening to other sides in order to learn.  When this particular subject comes up it tends to get heated mainly when individuals who have a history of swooping in to posts only when someone is at a vulnerable space to lay out their orthodoxy -- often with little meaningful personal story or credible information.  Most of the lashing directed at Matt in this thread was based on his history not just his words here.  I understand that you caveated that, but the danger of coming to the defense of one poster in one thread, when there are a number of long standing members who are taking issue with that person is that there is more going on than meets the eye. 

There are few people who will spend the time it takes to get to the place that you or jkinatl2 have gotten as far as HIV knowledge -- and those that might, probably won't get there prior to having to make a treatment decision.  Therefore, while we can provide support, OUR stories and even some links -- the primary players are themselves and their doctors.  Either side getting too strident here will only hinder them in making the decision that they need to make.  There are too many times when we all presume to know what is best for someone else.  Even with knowledge, hell, even with a medical degree, it is the height of presumption -- and down right dangerous, to offer specific medical advice on these forums.  Opinions are fine, but they shouldn't be dressed up as anything else....

It's easy to lose perspective on these forums (I may have done so once or twice.....   ;D ), but I do think if there are multiple people saying the same thing -- one should stop to consider why before jumping into the fray for the person who seems on the outs.

Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline newt

  • Member
  • Posts: 3,877
  • the one and original newt
Re: Am I in great danger?
« Reply #79 on: November 12, 2011, 11:14:28 AM »
The short answer to the OP's questions, is no you are not in great danger, but considering meds would be timely, especially given your low CD4%. Other matters, posting style, supplements etc, I choose not to comment on.

Good luck with however you choose to go forward.

- matt
"The object is to be a well patient, not a good patient"

 


Terms of Membership for these forums
 

© 2014 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.