My Issue With Early & Aggressive Treatment Of HIV...

[PhoenixGeoff]

Here's my attitude on the question of medical treatment:

You absolutely have to educate yourself as well as you possibly can before making any decisions. Do not rely on what the doctor is telling you. Sometimes they're wrong. Sometimes they're incompetent. Sometimes they don't have the best, most up-to-date information. In most cases, you have ample opportunity to take the time and make a good decision. But it's your responsibility to take advantage of it.

It's also your responsibility to keep the lines of communication open with your doctor. Tell them exactly what's going on, what you feel, how you're doing. Ask questions. Ask what the alternatives are. You have to be proactive. Don't just blindly do what you're told but be an active participant in your own treatment.

Note: that also includes being VERY proactive about STD testing and treatment, especially if you're barebacking. Head in the sand does not work. You need to tell your doctor that you're in a high risk category and that you need routine testing for things like syphilis, chlamydia, gonorrhea, etc.

Pulling the trigger on when to start treating should be something you yourself consider very carefully. Learn how to read the medical journals and understand what they're saying. Or at least go to the sites that will translate them into layman's terms for you. Do your research and then consult with your doctor and figure out what your treatment plan will be. Note: this is very much similar to the advice I give to people about having sex: learn the relative risk factors, figure out what level of risk you're comfortable with and have sex accordingly. The one thing I can't stand is people who allow themselves to remain ignorant and then complain with perfect 20/20 hindsight.

Obviously different people will come up with different treatment plans. Some will be more aggressive with meds than others. Hell, some will decide that garlic is the miracle cure. There's precious little we can do to change that. And probably not much that we should do. What we can do is take responsibility for ourselves.

[calrockxxx]

First, great to see this discussion here. I haven't seen any other forums where people actually go this deep into this topic (please point me to any if you know of some).

As I mentioned I'm another thread, I was in an early PrEP study and they put me on meds (I was neg then). Six months after the study ended I tested poz and it turned out that the HIV I had was resistant to those meds. That left a bad taste in my mouth about playing guinea pig in the future.

When I tested poz they asked me to participate in the START study and I declined.

I've been lucky enough to live in a city with some of the best research and teaching hospitals in the world, and I used to be thankful for that. After this experience I'm not so enthusiastic about it.

I've seen two docs who are leading researchers in HIV and each of them were on different sides of this fence about starting treatment early. When the decision is staring you in the face you make the best choice you can based on the information at hand. I've chosen not to start meds since my cd4 count is over 1000 and my viral load is consistently around 10k or lower (with some weird fluctuations that the doc has said may have been bad blood samples) .

But to add to RawTop's anecdotal evidence about top docs acting not always in the patients best interest... I was diagnosed with a neurological problem in childhood and treated by the head of the epilepsy program at a top hospital. He put me on Dilantin and Mebaral and I took that combo for nearly 20 years. When he retired, his successor thought that was unnecessary and stopped the meds. There was little evidence that the meds actually did anything to prevent the disease they originally thought I had, and I had been taking large doses of a barbiturate for most of my life. I was told the diagnosis was wrong and I shouldn't have been on meds all that time. My parents consulted a lawyer and really wanted to sue the hospital, but due to the hospital's inability to produce med records from 20 years before it was hard to put a solid case together. So I just went on with my life -- and experienced significant personality changes after finally ending the meds (it took two years to safely titrate down the meds). I lost out on a lot of childhood experiences because of fear and stigma associated with epilepsy.

So personal experience has led me to always get a second opinion and read the current literature whenever I've been told I should take a prescription med. And I'm fortunate to live in a city where that's easy to do (it's not easy to get an appointment with the top docs, but persistence pays off).

At the end of the day it's a personal choice, and the docs I've seen still present it that way. There's risk either way, and it's up to the individual to make an informed decision. When a doctor tells me they don't know what the long term effects of a med are, and I might not really need to take it, I remember my 20 years on two meds that are rarely prescribed today and make a choice that makes sense for me.

Edited February 19, 2012 by calrockxxx

[rawcumbiguy]

currently several countries have started trails of early treatment to see the risks and benefits of starting right after finding out. i am very curious to see the outcomes of these 10yr studies

[Guest Porthos]

MSKCC) insisted I had a brain tumor when it was a scar. Even _after_ two biopsies both said it was just scar tissue. She literally discounted the results of 2 biopsies that were done by one of the top neurosurgeons in the world (the chief of neurosurgery at MSKCC). The second biopsy was incredibly aggressive - you can still feel the hole in my head from it nearly a decade later. After all that, I've earned the right to be skeptical of doctors (not to mention seeing a loverLet's see... One of the top neurologists in the world (the chair of neurology at die in part because of overly-aggressive treatment). I even asked her whether the "growth" she was seeing was due to MRI technology showing more and more detail over the years. She was wrong, the radiologist and public university-educated neurologist were right. My hunch about MRI technology improvements looking like growth were right as well. God gave me a brain - I intend to use it and not just accept what I'm told.

I tested positive for HIV my CD4 was 511, my viral load 47,000. My Doctor suggested, not insisted, I should start treatment, because he felt I was educated, had good insurance and would stay adherent. Dr Gallant from Johns Hopkins thinks all positive patients should start....This is much different from your example about your neurology issue. There was obviously a question on what your growth was...there was no question as to whether I was / am HIV positive...a condition that left untreated is far worse than the medications side effects

[rawTOP]

...there was no question as to whether I was / am HIV positive...a condition that left untreated is far worse than the medications side effects

Not sure how many times I have to say this... The question is not whether to take meds, but when to take meds.

Dr Gallant from Johns Hopkins thinks all positive patients should start....

You seem to think just 'cause a doctor is from Johns Hopkins that his advice should be followed. My uncle was Professor Emeritus in pediatrics at Hopkins. One year he decided it would be good for his kids to run out barefoot in the snow to get the morning paper. They all got pneumonia that year. Being from Hopkins puts you in the top tier of doctors, but it doesn't make you infallible.

[Guest Porthos]

Not sure how many times I have to say this... The question is not whether to take meds, but when to take meds.

You seem to think just 'cause a doctor is from Johns Hopkins that his advice should be followed. My uncle was Professor Emeritus in pediatrics at Hopkins. One year he decided it would be good for his kids to run out barefoot in the snow to get the morning paper. They all got pneumonia that year. Being from Hopkins puts you in the top tier of doctors, but it doesn't make you infallible.

Do you know who Dr Gallant is? He is one of many who are suggesting early treatment. And by the way running barefoot in the snow does not cause pneumonia anyway . It is either bacteria or viral...frost bite maybe...stupid example. Your anecdotal examples are quite tiresome.

[rawTOP]

Do you know who Dr Gallant is? He is one of many who are suggesting early treatment.

Dr. Gallant has received research support from Gilead Sciences, GlaxoSmithKline, Merck & Co., Pfizer, Inc., Roche Laboratories and Tibotec. He serves on advisory boards for Bristol-Myers Squibb, Gilead Sciences, Merck, Panacos Pharmaceuticals, Pfizer, Inc., Schering-Plough Corporation and Tibotec. He has been a consultant for Abbott Laboratories, GlaxoSmithKline and Vertex Pharmaceuticals. He serves on the data and safety monitoring board for Abbott, Gilead Sciences and Koronis Pharmaceuticals. In addition, he has received honoraria from Abbott, Gilead, GlaxoSmithKline, Monogram Biosciences and Tibotec.

Source

So basically he works for the drug companies, and you think you should take his advice on when to start medications? I wouldn't trust someone like that.

[Guest Porthos]

So basically he works for the drug companies, and you think you should take his advice on when to start medications? I wouldn't trust someone like that.

When medication is the BEST defense we have against AIDS/HIV wouldn't you want the best Doctors available? Where would his money come from? The drugs work.

[TonyRedux]

Do you know who Dr Gallant is? He is one of many who are suggesting early treatment. And by the way running barefoot in the snow does not cause pneumonia anyway . It is either bacteria or viral...frost bite maybe...stupid example. Your anecdotal examples are quite tiresome.

i myself embrace both early treatment and Dr. Gallant as a leading authority i have seen grow in stature over the years, but ur refutation of RT's "cold feet" anecdote rests on a rationalist pretense SANS investigation. the link between cold feet and increased susceptibility to colds and influenza has been investigated and...*PROVEN*.

http://dumbscientist.com/archives/cold-weather-can-make-you-sick

...feel free to google further, bcuz if u try to refute me in a half-assed manner i'm gonna flame ya good.

[rexTO]

I agree Tony, all drugs have side effects. Each person has to decide which is worse, having a virus in your system attacking your immune system and your organs or taking a coctail which will prolong your life. I have been fortunate in that I have had very little side effects since 1996 when I converted.

[rawcumbiguy]

I used to advocate the longer you can wait the better but seeing the new info come out that shows earlier the treatment the better response to meds and possible lower doses that can be used to control hiv I have changed my mind. The lower the dose that can be given can help limit the side effects which usually helps people take their meds regularly. I am not trying to change anyones mind since it is ultimately a personal choice that everyone should make when they comfortable the point im making is everyone should educate themselves and make an informed choice. I will be participating in a drug trail for the new medicine call Quad I am hoping this works since I have personally ran out of other options that would work for me.

[rawTOP]

i myself embrace both early treatment and Dr. Gallant as a leading authority i have seen grow in stature over the years, but ur refutation of RT's "cold feet" anecdote rests on a rationalist pretense SANS investigation. the link between cold feet and increased susceptibility to colds and influenza has been investigated and...*PROVEN*.

http://dumbscientist.com/archives/cold-weather-can-make-you-sick

...feel free to google further, bcuz if u try to refute me in a half-assed manner i'm gonna flame ya good.

Thanks for the defense, but before you guys get in a flame war over something that's barely relevant to the thread I should probably mention that the incident i question happened maybe 50 years ago - it was sorta family legend and I can't remember if it was pneumonia or something else. The point is, the pediatrician in the family made all his kids sick by asking them to do something all the other (non-MD) parents in the family knew was a dumb idea.

[TonyRedux]

Thanks for the defense, but before you guys get in a flame war over something that's barely relevant to the thread I should probably mention that the incident i question happened maybe 50 years ago - it was sorta family legend and I can't remember if it was pneumonia or something else. The point is, the pediatrician in the family made all his kids sick by asking them to do something all the other (non-MD) parents in the family knew was a dumb idea.

ur welcome to the defense, but it's due more to the core epistemological issue than for ur benefit...Truth is my aim. the folk-wisdom that exposure to cold will make one sick is nearly universal, and given that it now a proven reality, the obvious conclusion is that such folk wisdom is the result of accumulated observation and subsequent adaptation. the dismissal of this folk wisdom rests on nothing more than rationalist and credentialist arrogance..."until 'Science ' proves it, it doesn't exist" is an asinine political reaction to the rise of religious fundamentalism in political life.

as another example, i have extreme concerns about unfettered Genetically Modified Crops and products being placed on the open market without labeling. my concerns r in fact scientific, and mirror in many ways ur concerns about greedy pharma companies skewing drug-data for their own benefit. in some online forums, i'll have assholes swarm on me with talking points lifted directly from Chris Hitchens, calling me "Jesus freak luddite" and such (fyi at no point had i made any reference to "God" or "Natural Order").

blowhard arrogance that obscures Truth deserves little mercy, regardless of the setting or the social background of any given blowhard. i dont know if skylon intended to pursue that tactic further n become a full-on blowhard, which is why i invited him to google the matter further b4 responding. in HIS defense, u DO get just a bit over-reliant on anecdotes, but this isn't Debate Club and i don't like Discussion Enforcers who can't hide their own bias.

of course, just about anyone can credibly call me a "blowhard" when we strongly disagree, as i can be quite strident.

[ryanroman]

One thing you have all tellingly ignored is that HIV itself has long since been proven to be a SYSTEMIC virus, attacking nearly every system in the body, and does not simply attack the immune system as was previously thought. The mere presence of the virus causes the human body to unleash an overall inflammatory response that further damages itself...and that this cycle of progressive damage at deep levels starts from the moment of HIV infection, and for the vast majority will continue until death absent anti-retroviral therapy.

A wider appreciation of this is not helped by the undeniable greed and self-interest of the pharmaceutical industry, but the scientific consensus continues to swing in the direction of early treatment being better. When you have HIV, it is essentially trying to eat you. There is no historical precedent for determining that a deadly virus should be allowed to incubate for best health. The only argument toward that end is based on the toxicity of HIV meds themselves, and by all accounts they are far less damaging than ever before.

The actual systemic damage of HIV at every stage of infection is something that gets far too little attention in every argument I've ever seen about "when to treat" among lay persons.

from what i have learned about HIV and HIV management, based upon my research as well as friends/lovers i've had with HIV, the sooner you begin treatment, the less likely you are to succumb opportunistic infections. from my education on HIV management, I'd agree with Tony.

[rawTOP]

On a related note... Take a look at this article about how big business is affecting science...

http://www.guardian.co.uk/science/2012/feb/19/science-scepticism-usdomesticpolicy

There's basically a war going on against science and it's funded by big business marketing departments. My contention in this whole thread has been that there's a war going on against science in the pharma business as well. The odd part is that pharma is inherently science-based, but the way they go about things these days they squash any discussion that might go against them selling more drugs and making a bigger profit. True science is about the free exchange of rational ideas. Pharma has created a dogma around ARVs by co-opting "thought leaders" in the field and putting out studies with flawed analysis. True science is out the door, in it's place is group think.

My question for all of you is what does it mean for gay guys to get caught in the middle of a war on science where corporate profits, not your health, is the primary objective?