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Author Topic: HIV Meds and Mental health  (Read 9892 times)

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Offline ThePerfectStranger

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HIV Meds and Mental health
« on: August 05, 2007, 06:27:47 PM »
I am a long term survivor of HIV (approximately 25 years now) and work in the HIV fields as a personal assistant to an HIV doctor in a private practice.  One question that never seems to get asked but should be (IMHO) something EVERY person who is on treatment is this:

What are the long term mental side effects (both temporary and permanent) from taking these highly toxic medications for most of our lives?  It goes to reason that as chemical beings (which we are) who each have unique amounts of any given chemical in our system (both naturally occurring and the ones we choose to ingest either medically or socially) that these drugs will have some sort of long term effect on our brains.  This just seems to be (to me at least) an obvious conclusion... so the question is, why are there no studies being done to determine the long term effects these drugs are having on our brains and not just on our bodies - since we have already determined that many of them do horrible and sometimes irreversible damage to our major organs is stands to reason the long term effects on these medications should be just as damaging (if not more so) to our brains.  So does anyone out there know of any studies being done in regards to this and if not have you asked yourself (and your doctor and his drug reps) why no one is looking into this?  Once upon a time there was a condition known as "AIDS DEMENTIA" - the question now is will we now be suffering through another period of HIV related mental illnesses that are being caused by the meds themselves?  Has it occurred to anyone yet that the depression and anxious feelings and anger and other feelings most of us did not normally experience on a daily basis could be the result of the meds effects on our brains?

If you are an activist I think this is the one of the most important issues facing the HIV community now and one that needs to be looked at seriously.

Offline Iggy

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Re: HIV Meds and Mental health
« Reply #1 on: August 05, 2007, 08:44:14 PM »
I don't know of studies and haven't actually looked into the matter, but I do agree that it defies logic to believe that the meds don't have an effect on our mental capabilities.

It's one of the reasons I fear taking meds.

However I also know that HIV that is allowed to run untreated can cause devastating and in many cases irreversible effects on a person's mental capabilities as well.

Offline ThePerfectStranger

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Re: HIV Meds and Mental health
« Reply #2 on: August 06, 2007, 12:52:44 PM »
"However I also know that HIV that is allowed to run untreated can cause devastating and in many cases irreversible effects on a person's mental capabilities as well."

No question or debate about that whatsoever that's for sure.  But it seems to me that now that we have the physical side of the battle under constant research and some amount of control it does seem a little bit remiss that absolutely no one (scientists, doctors. activists, pharmaceutical companies, etc) are not even acknowledging this issue much less addressing it in a clinical way or in any political arenas.

If we are going to live "longer fuller"  lives shouldn't we at least have a semblance of an idea of just how messed up our brains are going to be from these meds... you know - just to be prepared for what could turn out to be a large amount of long term survivors who end up in constant need of supervision due to their brains being fried by the drugs that saved our lives?

It does kind of pay to think about the future still doesn't it?  In the practice I work at we see a very large amount of HIV patients with a multitude of mental/physiological issues that we were not seeing 10 years ago  and that we do not see on anywhere near the same level in non infected patients.  Seems to me that there logically has to be some correlation and some sort of research should be being conducted to get answers to this important question.

Offline bear60

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Re: HIV Meds and Mental health
« Reply #3 on: August 06, 2007, 07:53:08 PM »
I'm sorry.  I cant really relate to the idea that meds are going to cause brain damage before HIV will.  MY friend Jim died in Dec 06 because HIV destroyed his brain.   If he just could have gotten those T cells up....maybe he would not have died of PML.

Quote you: ""However I also know that HIV that is allowed to run untreated can cause devastating and in many cases irreversible effects on a person's mental capabilities as well."
.............................................................Can you say death?  HIV untreated can cause brain damage and death.
« Last Edit: August 07, 2007, 08:38:40 AM by bear60 »
Poz Bear Type in Philadelphia

Offline ThePerfectStranger

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Re: HIV Meds and Mental health
« Reply #4 on: August 07, 2007, 12:47:25 PM »
uhm actually I was quoting Iggy but in any case I am truly sorry for your loss.

The question here however, is not whether or not to take meds  (and yes I do know a few very long term survivors who never have and are doing quite well which makes me jealous as all hell lol - I have been taking meds for 20 years now pretty much so I am definitely not saying one shouldn't take their meds becasue of the liver, heart and or other organ damage they all cause... I'll take that extra time and deal with those complications when they come) but rather the question is WHAT are these meds doing to us long term psychologically and thus, what should we and the healthcare system "look forward to" and be prepared for in say 20 years when (and if) large groups of long term survivors of HIV start becoming psychotic or suicidal or develop and number of other mental conditions requiring full time treatment and care?  The question is why is no one doing research now on this so that they may be able to prevent them from happening or at least recognize when they do begin to happen.  I fully expect to live to 100 and I know how crazy I am now... I just wonder how much crazier these meds will make me as I get older?  This is a simple fact - every drug we ingest causes different reactions in every person, dependant upon the dosage, patient weight, patient internal chemical makeup, and so forth.  It is also basic fact that long term usage of any drug causes your brain (which is full of chemicals all responding to the new chemicals pouring into their system) to eventually create entire new neural pathway and, depending on the toxicity of the chemicals being introduced to the system, can destroy old neural pathways.  Same principle that applies to the multitude of illegal drugs like Heroin and Methamphetamines and so forth also should (in theory due to the high toxicity of both the legal drugs we take and the illegal ones we "don't") should hold true. And theoretically the same long term irreversible side effects could pop up as with any other long term user of a drug.  Just because the ones we take for our condition is legal doesn't automatically make it safe in the long run, particularly when we are talking about drugs that have no "long run" to look at.

No one is saying don't take your meds they could make you crazy in 20 years all I (and others) are saying is this is an issue that needs to be addressed and so far not only is it not being adddressed it doesn't even seem to be on the minds of the The US Government, The FDA, The Pharma Companies, the doctors or even most patients. 

Short sightedness played a huge part in the initial spread of HIV - do we really want to repeat history on a mental health level in our community?
« Last Edit: August 07, 2007, 12:55:25 PM by ThePerfectStranger »

Offline Iggy

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Re: HIV Meds and Mental health
« Reply #5 on: August 07, 2007, 08:50:01 PM »
I very much agree with you about the issue of what meds can, are and will do to our bodies, both physically and mentally.  I also am happy to see that you state that you are not in any way suggesting that we do not take the meds but want there to be a more open exploration of the effects that many of us deny (whether due to fear or just being unable to see it in our current lives) are having and will continue to have on us.

I read your other thread about the book project and you doc freind and wonder if you would have better access than most of us to some ideas of where to get the push forward on such studies? 

Offline ThePerfectStranger

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Re: HIV Meds and Mental health
« Reply #6 on: August 08, 2007, 12:43:15 AM »
Thanks Iggy I appreciate your response.

I wish it were as simple as being in the healthcare industry and having doctor contacts and so forth to get this ball rolling but unfortunately there's a big obstacle in the way.  The big healthcare companies don''t even want to pay for the money it should be spending to find a cure for this disease (after all it IS much more profitable to them if we all have to spend the rest of our lives taking THEIR meds than it would be in the long run for them to actually cure it).  If they can't be bothered with that kind of research you can pretty much guess where their priorities are in regards to researching things that won't come to a real head until most of the main money makers in the healthcare and research industry are dead or retired.  Someone else's problem somewhere down the line and why bother with that when it will only cut into their current outrageous profits?  Despite all the drugs they have given us to make this disease manageable for the most part they are NOT our friends nor do they really care to cure us.  Cureing us puts them out of a job.  Leeting us go crazy and suffer major organ damage ensures future business for them and their kind.

Unfortunately the doctors, for the most part, are caught in the middle.  The reality is independent doctors are disappearing at an alarming rate to join the big couple of health "care" organizations.  The ones who don't join do their best not to rock the boat with them because the fact is they run things now - your doctor and his opinion and training is often the last consideration to a company whose main business is actually to make money.

To a certain extent I think the same thing happens with the Dental Industry.  No one will question or debate the enormous importance of good dental health to help ensure good overall health and yet (for some odd reason) Dental Health is not covered by any government run health plan (Medicare, Medcaid etc). 

I think the only way these things are going to change is if we as patients and tax paying citizens start grass roots campaigns informing people about these issues (you would be amazed at how many people don't know there is no Federal Dental Coverage or that there is no research going on about the long term effects of the poisons we HIV'ers have to take on a daily basis).

The few independent doctors left can't afford to rock the boat without the chance of repercussions from the Health Insurance industry and the insurance companies aren't going to do it voluntarily.  Many politicians who are in the back pocket of the health insurance industry aren't going to do much either without a lot of prodding from their constituents.  So that leaves it up to us to raise hell about these things to anyone who will listen.  Start a petition, spread pamphlets,write all of your elected officials and if they don't respond then run for office yourselves.  Whatever it takes to make people wake up to these things and take action to correct them. 

Not the best answer I know but it's late and my brain is officially shutting down now and the autopilot is about to kick in...

Email me or PM me if you like or have any suggesions or would like to participate in my "project" (it's gone from a simple little joint induced idea a couple of days ago into a full blown concept that's growing so fast my head is spinning - that's what I get for having an idea huh? lol)


Offline Smoothstone

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Re: HIV Meds and Mental health
« Reply #7 on: August 08, 2007, 06:00:06 AM »
Thanks much. You point out a potential gap....baseline assessment...anyone already working on these issues? activistwise, policywise, service deliverywise, researchers...the of the latter are inplace and have a history and hopefully agenda...which would be good to learn about and share with other potential activists...and researchers and some docs will  love our push as consumers, activists to get more funding, higher prioritizing...what is our current activist mental health agenda...who, how, when, where...We didn't use to have the internet, but today it's easier to network. And we could think globally too...the impact is global.
       I'm interested. We have potential allies to identify and then present an agenda to. Always thinking "next steps? who, when, where, timelines, communication systems to network, to integrate new people overtime...assuming that others will join the momentum...this is relevant activism for PWAs. 
       On the hopeful front...20 years from now some of us...perhaps taking a subset of medications...place your bets...will be saying..."well back in the mid 90s, when we were desparate and people were dying of AIDS , we starting taking these new drugs...and we're still here" and "we dont have alzheimers at the typical rate", and we dont have...but we do have...  positive potential outcomes. Some of the impacts can be surprisingly positive too. Your monitoring point is essential...I would think there are already some researchers doing just that...who, where, how, feedback time from we consumers. 
       I got ziagen in a dementia trial...experienced a comeback capacitywise...have experienced horrific side effects from some drugs, yet remain on my current combo since '97 and functioning...relatively well to date...perhaps delusional and sense of humor in tactful.        We may need to create a community response to get momentum on this...we've done it before. We have some institutions in place which we might be able to piggyback this priority   AMFAR could assist. Project Inform did an immune thinktank, could be interested?. Treatment Action Group is brainy?Coalition relationship with Alzheimer activists? researchers? Experienced activists ready to reactivate on something very relevant futurewise.
      I've seen dozens of PWAs with dementia, too many possibly untreated on the AIDS ward of Laguna Honda Hospital in SF...most single,poor, relatively if not totally isolated, with minimal if any advocacy.Some dementia is treatable.

 The issues you raise are compelling . Let's network on this. I'll check with Dr. Richard Price at SFGH and reportback. Back to sleep. Hank   

Offline Dragonette

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Re: HIV Meds and Mental health
« Reply #8 on: August 09, 2007, 06:09:27 AM »
Hi Brian.

Nice to meet you.

It would be difficult to research. First b/c of all the different meds, some of which affect the brain more (sustiva), others less. Second because of the changes in life that HIV brings which themselves can cause anyone to go nuts (isolation, discrimination, failing health, poverty, etc). Third because a lot of poz people continue to take other susbstances. Fourth because you would have to discount any prior problems before drugs and also dormant tendencies. It has not been possible to prove conclusively that marijuana for example cuases psychosis in chronic use even though there is much more than anecdotal evidence about even a single use inducing it in some individuals, yet it is not possible to prove scientifically. I do know that many people go nuts on HIV meds but many others don't. Very hard to say, the incidence of depression & mental disorders is so high anyways.

This kind of reminds me of the research that smokers get less alzheimer. Well ine reason could be they get it less because something else gets them first... very hard if not impossible to prove. Depression is alreay associated with HIV. Dementia and foginess too. Hard to say what is HIV and what is meds. But any med that you take over time will have an impact, then again, the most amazing quality of the human brain is its plasticity - the ability to learn, adjust and adapt. You can see even people with a hole in their brain that have learned to function normally and compansate for damaged areas, so I prefer to be optimistic and think that we can handle the effects of long term med use. After all, once they are effective and the virus is depressed, they remain in the same level, the levels don't increase over time.

Regarding the unprofitability of a HIV cure, I don't mean to dispute you, I have no doubt that the pharma companies are immensly greedy. And yet, if we take this view, what is the incentive to find a cure for any other disease, or a vaccine for it? The history of medicine shows that it is not the case. As huge as the HIV market is, compared to the other meds it is a drop in the bucket. The pharam companies also do not work in a vaccume and depend on global funding not just profits, and the interest of the world ultimately is to cure the diease because even in the west it is costing so much to keep us alive. I have no doubt that there are very sinister things going on in the phrma boardrooms, but I don't think that they are not pushing for a cure, if only because the first one to reach a cure will hit an enrmous jackpot and push all the others out of competition.

"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

Offline koksi

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Re: HIV Meds and Mental health
« Reply #9 on: August 12, 2007, 08:28:14 AM »
I am curious what specific symptoms we are talking about.  Can you be specific about what aspects of mental health and psychology are affected by treatment?  I would be curious to hear from others about this as well... just what sorts of psychological effects long-term treatment has.
seroconversion in March of 2006
positive test May 2006

10/2013: Undetectable, CD4 1000
2009:  Began Atripla

10/2007:  VL 2,300 // no CD4 numbers! :-(
09/2007:  Begin Truvada/Reyataz/Norvir
08/2007:  VL 824,000 // CD4 344 // 21%
06/2007:  VL 326,000 // CD4 351 // 17%
04/2007:  VL 410,000 // CD4 242 // 26%
06/2006:  VL 444,893 // CD4 479 // 21%
05/2006:  VL >500K    // CD4 402 // 17%

Offline thunter34

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Re: HIV Meds and Mental health
« Reply #10 on: August 12, 2007, 09:56:39 AM »
Hmmm....I posted an eerily similar thread to this in Living With.


And these on top of all the brainfog threads that have been posted here over time.  There is definitely something amiss, though I am afraid getting it to be acknowledged and addressed will be an uphill battle, to say the least.
AIDS isn't for sissies.

Offline Andy Velez

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Re: HIV Meds and Mental health
« Reply #11 on: August 12, 2007, 08:06:42 PM »
You've got it spot on there, Hunter.

We've seen it so many times in other areas of medical history, and again and again in this epidemic, that those living with the virus are more effectively attuned to what's going on with their bodies. They have proven over and over to be a great source of reliable information. That the problems related to the mind are largely ignored by the establishment doesn't mean those problems aren't real and related to HIV and to meds. 

The question is what will it take launch some serious studies of these issues. Instead of ignoring them or variously treating them with drugs that may numb (or in some cases exacerbate) the symptoms without dealing with the origins of same.

And if such studies could be developed, what are the questions they should be asking? 
Andy Velez

Offline ThePerfectStranger

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Re: HIV Meds and Mental health
« Reply #12 on: August 15, 2007, 05:16:32 PM »
Interesting study -

AIDS virus is a "double hit" to the brain: study Wed Aug 15, 1:39 PM ET

The AIDS virus damages the brain in two ways, by not only killing brain cells but by preventing the birth of new cells, U.S. researchers reported on Wednesday.

The study, published in the journal Cell Stem Cell, helps shed light on a condition known as HIV-associated dementia, which can cause confusion, sleep disturbances and memory loss in people infected with the virus.

It is less common in people taking drug cocktails to suppress the virus, and why HIV damages brain function is not clearly understood.

The virus kills brain cells but it also appears to stop progenitor cells, known as stem cells, from dividing, the team at Burnham Institute for Medical Research and the University of California at San Diego found.

"It's a double hit to the brain," researcher Marcus Kaul said in a statement. "The HIV protein both causes brain injury and prevents its repair."

The cocktail of drugs known as highly active antiretroviral therapy or HAART that treats HIV does not infiltrate the brain well, allowing for a "secret reservoir" of virus, said Stuart Lipton, who worked on the study.

HIV-associated dementia is becoming more common, as patients survive into their older years.

Working in mice, the researchers found that the virus directly interferes with the birth of new brain cells from stem cells.

"The breakthrough here is that the AIDS virus prevents stem cells in the brain from dividing; it hangs them up," Lipton said. "It's the first time that the virus has ever been shown to affect stem cells."

The culprit is gp120 -- a protein found on the outside of the AIDS virus, the researchers found.

"Knowing the mechanism, we can start to approach this therapeutically," Lipton said.

"This indicates that we might eventually treat this form of dementia by either ramping up brain repair or protecting the repair mechanism," Kaul added.


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