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Is HIV Viral Undetectability Important?

January 9, 2014

ScotCharles

ScotCharles

I have been on anti-HIV meds since 1994. I have had HIV definitely for thirty years and probably more. In that time I have seen people sickened and killed by the meds. I have developed long-term complications as a direct result of the meds. More importantly recent studies of which I was a subject have shown that HIV doesn't sicken people by infecting CD4 cells as much as the virus' attempt to infect sleeper cells, which releases chemicals that cause cells to self-destruct. This self-destruction leads to complications such as early-onset dementia, heart disease, cancer and debilitating arthritis. The HIV meds do little to control the reservoirs of HIV that hide out in the sleeper cells located throughout the body. For these reasons, I personally do not believe the current mania for nuking HIV into so-called undetectability is either wise or effective.

I know that most people think AIDS is controlled by HAART that relies on massive amounts of strong drugs. Most people feel the meds don't do as much damage as earlier versions of antiretroviral meds. We who have had HIV for more than twenty years can remember when we thought the same about AZT, d4T, ddC and ddI. Now some of those meds have been withdrawn from the market and others have been found to have long-term consequences. Since ACT UP forced the FDA to release protease inhibitors in the mid-nineties, longitudinal studies have been abandoned. We who take AIDS meds are the longitudinal study. I feel certain that in the future antiretroviral meds we take commonly these days will be found to have dangerous consequences.

In the early part of the aughts, I religiously took HAART; nonetheless, I developed debilitating neuropathy that caused pain, weakness and recurring paralysis. I often was so weak I couldn't open doors. On a regular basis, I found it difficult to walk. In those days I began to use a cane. Now as the neuropathy has become worse, I frequently need to use a wheelchair. I believe the neuropathy was brought about by antiretroviral meds. In addition to neuropathy, I developed excruciatingly painful pancreatitis and liver inflammation as a direct result of taking Viread for which I was put on a morphine drip for a week in hospital. For me, the meds have had painful consequences.

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It bothers me that the anti-HIV meds have dangerous and annoying side effects. Doctors tell us that side effects are not experienced by most people. What they don't tell you is that the longer you take the meds the more likely it becomes you will experience side effects. I refuse to take protease inhibitors because of their effect on cholesterol levels. I have had friends who had fatal heart attacks because of uncontrollable cholesterol levels. I had a heart attack several years ago due to elevated cholesterol levels and high blood pressure. I also refuse to take Combivir, because a component of that drug contains a chemical that affects the kidneys. I have developed liver and kidney issues over the years I think due to the meds.

I am angry that most people believe HIV and AIDS is no longer a problem because of the advent of HAART. Granted, we the infected no longer die quickly; but, we, particularly those who have had HIV longer than twenty years, do develop diseases as a result of the poor control of hidden HIV and the effects of taking anti-HIV meds. A cure for HIV and AIDS, no matter what science tells us, is not in the immediate future. Recently, the promise of bone marrow transplants as a cure has been found not to be universally effective. Not to be a killjoy, but those of you with short-term HIV infection will likely be on antiretroviral meds for many years and will experience health issues related to long-term use of antiretrovirals and the cell-killing effects of hidden HIV.

What is needed now is for our doctors and the general public to become familiar with the issues related to long-term infection with HIV and long-term use of antiretroviral medications. My infectious disease specialist (IDS), who is respected for her knowledge of HIV and AIDS, is ill-informed on the course of HIV-related dementia. She refuses to believe my recent frightening episode in which I forgot who my partner of 33 years was is a symptom of dementia. She told me that dementia develops slowly and is not characterized by episodic dementia. My psychiatrist, who is an expert in dementia, told me that dementia is characterized by episodic symptoms that become more common and of longer duration as the disease develops. Dementia does not develop as a constant function.

My belief that the antiretrovirals are dangerous and should be taken with caution has had consequences for me. I tried not taking any antiretrovirals and developed septic shock for which I was hospitalized with kidney failure. My beliefs changed after that and I began taking Truvada and half the recommended dosage of Isentress. My HIV levels increased and my CD4 percentage dropped. I began taking the recommended dose of Isentress and my viral load dropped and my CD4 percentage increased. My viral load is now about 50,000; and, my CD4s are at 475 which has been my normal level for over twenty years. Being HIV positive for thirty years and more, I no longer have a horror of elevated HIV loads. Granted, I have HIV-related dementia and HIV-related depression as well as other problems that were triggered by HIV in my body such as hemochromatosis and bi-polar disorder. But, as research has shown, as a long-term infected, I would probably have developed those conditions regardless of whether or not I took antiretrovirals.

I was worried that I was passively suicidal in my desire to reduce my exposure to antiretrovirals so I sought the assistance of an HIV/AIDS-experienced psychologist to explore that issue. After a year of work, both he and I concluded that while I have passive suicidal ideation due to depression, I have no desire to use avoidance of antiretrovirals as a means of hurting myself.

If you ask your IDS about reducing the possible side effects of anti-HIV meds he will discourage you from reducing your drug load. That advice is a good medical opinion that should be followed as much as you feel comfortable. You know your body. Make your own decisions about the meds and discuss them with your doctor. I have chosen quality of life and my doctor reluctantly agrees. I neither condone nor urge you to make my decision.

The answer to the question posed by the title of this blog is maybe yes, maybe no. The answer is for each of us to make, in consultation with our doctors. We, the infected know our bodies and the decision is wholly personal.

In Angels in America, the author has a character say that he needs to think about taking a strong drug like AZT. After nearly thirty years that remains good advice on all anti-HIV treatments.

Read ScotCharles's blog, Life Is a River.

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Reader Comments:

Comment by: ScotCharles (Los Angleles) Tue., Mar. 4, 2014 at 9:33 pm EST
I miswrote. It was Videx that gave me pancreatitis not Viread. So many drugs taken over the last twenty years of taking anti-HIV meds, I lose track.
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Comment by: W (Hartford, CT) Sat., Feb. 1, 2014 at 8:09 pm EST
I agree with many of the other comments already posted. This is a GROSSLY misleading article and makes me lose tremendous respect I've had for this website. You offer opinions without any clinical evidence or data. Subjective doesn't begin to describe your "claims"!

I say your medical care is substandard if someone isn't actively treating your depression. You should NEVER be stopping meds or tweaking the dose based upon how you feel - no wonder why drugs become useless against a very smart virus.

I know - when I was infected sometime in 2005 I was the "lucky" one with a drug resistant strain so Atripla was not an option. I've been on Truvada/Kaletra since 2008, undetectable after 4 months and t-cells in the 700-800s. Oh, I'm an ancient 55 year old I might add.

You mention nothing about your diet, your exercise regimen, etc. I had a calcium heart scan done this past June to evaluate my real risk of heart attack. I scored -0-; a perfect score. I demanded detail LDL testing to evaluate large vs. small particle which does the most damage - 92% of my LDL is large and we've stopped Crestor as a result.

I eat a healthy diet, limit to one bacon cheeseburger a month with fries and red wine. I exercise 3x a week with weights and 1-2x for 30 mins with cardio.

I have arthritis UNRELATED to my hiv infection, and can honestly say I'm in the best shaped I've ever been. I'm also blessed to have a regular physician and my infectious disease specialist operate as a real team together AND with me.

I wish you better days ahead and in my opinion, finding better medical care/advisors. As I told my infectious disease guy - I'm a type A who is not going to go quietly into the "night".....I prove it every year to him. This past Oct he told me I've never looked better!!
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Comment by: ScotCharles (Lo Angeles) Mon., Feb. 10, 2014 at 2:06 pm EST
I had a very good friend named George back in the mid 1990's. George ate a healthy diet, taught a Chinese meditation/exercise regiment called Chi Gong, lifted weights, and ran marathons. He avoided AIDS meds until his CD4 count fell below 400. In those days there was no reliable test for HIV count and insurance companies wouldn't pay for the test anyway. His doctor put him on Crixivan, a protease inhibitor. Within a month he developed a buffalo hump, his cholesterol went over 300, and he developed horribly painful neuropathy. The next month he died of a massive heart attack. As for a cholesterol test, your doctor should order that as a matter of course as he should a full metabolic panel, a vitamin d3 test, lymphatic subset, HBV, and HBC. AIDS meds are hard on the body. I have the best IDS in Los Angeles County, a world renowned neurologist and an award winning psychiatrist. A doctor on this very website stated that PI's inhibit CYP3A4(google it) and that soon they would be dropped from common use. I'll risk a little virus until my IDS devises a non-PI regimen. I see her next week. Cheers.


Comment by: Sam (Mancheater, UK) Tue., Jan. 28, 2014 at 10:44 am EST
As someone who is awaiting their test results but feeling uncomfortably confident they will come back positive I find your posting generally unhelpful and disheartening. Of course I have not walked a step in your shoes, let alone the last 30 yrs and can only say that I am glad yuu are atill here to tell your tale. However with what is now surely better knowledge and drugs available on hiv surely my prognosis for the future is better than had I been diagnosed in te 80's or 90's. While try may never find a cure the meds will keep improving and the survival rate going up and the side effects going down.

As I say, I am just a novice at all this and would relish having no knowledge at all, given that surely ignorance to any of this would be bliss. But given I am sure I will be hearing bad news in the coming days I am arming myself now with as much info as I can. The choice to take the drugs or not will no doubt come up and I've already decided I will risk the side effects as appose to risk the other. I plan to see old age and I plan to have children, all of which is possible with drugs these days. And I think that is the main driver for anyone, surely? To live and fulfill your dreams. From what I know taking nothing is a death sentance, taking meds is a lottery. Well I'm buying my ticket and keeping my fingers crossed.

But good luck with your journey and please wishe te same with mine.
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Comment by: ScotCharles (Los Angeles) Mon., Feb. 3, 2014 at 8:26 am EST
Life is always the best choice; but, you are more than a body on a doctor's couch stuck to antiseptic paper. What I am trying to get across is that you need to be an informed consumer. Question your doctor's choices of your meds. You will be taking anti-HIV meds for decades in all probability.

There are many alternatives to PI's on the market.
Take a clue from us who took meds now known to have had dangerous long term side effects. Ask. Question. Make your doctor look up from his computer as he types in your data and talk to you eye to eye. It is your right.


Comment by: PG (LA, CA) Mon., Jan. 27, 2014 at 1:38 pm EST
Why isn't there a big statement across the top of this article stating "This is full of wild-ass non-scientifically-informed opinions that could be hazardous to your health"? For a website that tries to be responsible in the information it presents, not highlighting this as an opinion piece based on some very one-sided information seems very irresponsible.
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Comment by: ScotCharles (Los Angeles) Mon., Feb. 3, 2014 at 8:31 am EST
In the opera Die Fladermaus, the Russian count sings "Chacun au son goute", which means each to his own taste. Read some articles on the suppression of CYP enzymes by PI's before you spout off again. What I am saying is become more than a patient to be talked to like a child by your doctor. Ask. Question. Probe.


Comment by: James Nelson (Dallas TX) Fri., Jan. 24, 2014 at 12:15 pm EST
I agree with you, but I would be terrified of mutations from lowering doses. I did that once mostly by neglecting my pill schedule and the drugs became useless, now on the last option I don't want this to happen again. My HIV of 20 yrs was complicated also by HEP C which I cleared 2 yrs ago. I have had to reduce the booster Norvir because of the extreme diarrhea. I do have peripheral neuropathy and drop things a lot. I like you am very uncomfortable with the known and possible side effects of so many strong meds, but after losing so many friends when there were no meds it is hard not to continue conventional treatment. Awareness and long time studies do need to be continued. It does seem that all research has stopped with the extremely costly and profitable drugs used now.
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Comment by: ScotCharles (Los Angeles) Mon., Feb. 3, 2014 at 8:37 am EST
I am so glad you have survived. Probably, like me and a number of survivors of twenty years or more you suffer from survivor's guilt. Iwill write on that tough topic soon. What is sorely needed is research on us, the survivors of twenty years or more. I find it insulting that the cancers, arthritis, heart disease, and diabetes are linked to lifestyle choices not the meds or the virus. Ask. Question. Probe


Comment by: Jerry (San Jose) Fri., Jan. 24, 2014 at 1:46 am EST
I found your essay to be engrossing and therefore worthwhile, but also disturbing. You are unjustifiably generalizing about clinical outcomes in people with HIV based on your personal experience. I fear that you will contribute to irrational fears among the newly diagnosed that HIV treatment is threatening. Here's a different narrative: I've had HIV for 29 years, and I took AZT/DDC/DDI/3TC in the early days, with no observable side effects. Then I took nothing for 6 years, and now Atripla for 9 years. Side effects? Dementia? No way! Seriously, I LOVE taking that chunky little tablet of Atripla each night. It represents my commitment to continued wellness, and I do feel physically and psychologically well with a CD4 of c. 750. My mind is still sharp enough; I recently received my PhD. I mention this only to underline that your experience, as unfortunate as it is, is not inevitable or universal these days, contrary to your conviction. As other readers observe, the fact that you were willfully shortchanging yourself in taking sub optimal therapy was the real trouble here, far more than the medications. Based on the evidence of my experience, your "certainty" that the meds will eventually cause serious health problems or that HIV will nonetheless disable me, so far remains untrue. My impression from your essay is that you may be feeling left out in the shift to better treatment nowadays, given the past troubles you describe, and you would perhaps like to remind us of the bad old days with which you still strongly identify. Certainly, different people have varying responses to treatment, but the best favor you can do for yourself is to release your attachment to your earlier travails and give the current standard of care a full-hearted try. The fact that you have had dementia and other problems, as you say, suggests that your reluctance to try fully suppressive HAART has not helped you, and has likely led to a worse outcome
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Comment by: ScotCharles (Los Angeles) Mon., Feb. 3, 2014 at 8:46 am EST
I earned an MBA from a prestigious British university in the last ten years and still keep up in my field of the effects of ageing populations on politics and financial markets. I have no spleen to vent. What I wanted to do, and I think I have succeeded in that, is to get people with HIV to become informed consumers. Even the doctor who responded to my post, agrees that PI's suppress the important anti-toxin activity of the CYP class of enzymes. Question. Ask. Isn't that what you PhD taught you to do? I'm curious, do you have survivor's guilt?


Comment by: Katie (Missouri) Wed., Jan. 22, 2014 at 5:35 pm EST
Viread is a component of Truvada. If it caused pancreatitis before, why isn't it causing the same problem now?
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Comment by: ScotCharles (Los Angeles) Mon., Jan. 27, 2014 at 3:04 pm EST
Go figure. I was taking more Viread in those days in combination with Norvir. My endocrinologist at the time thought I had liver inflammation as star shaped bodies were found in my liver that usually predict liver cancer. PI's are dangerous as they inhibit a group of enzymes, CYP's, that eliminate toxins and lipids from the body. Be careful and become a health consumer rather than an HIV victim.


Comment by: Gus Cairns (London) Wed., Jan. 22, 2014 at 3:51 am EST
Well, Scott, my personal position is that the toxins 50,000 copies of HIV are squirting into your body are considerably worse than anything that today's ARVs can do (it sounds as if you have been affected badly by some of the bad NRTIs that aren't used any longer).
You mention you have "HIV-related dementia and HIV-related depression as well as other problems that were triggered by HIV in my body such as hemochromatosis and bi-polar disorder. " A lot of that might go away if you took modern meds, though some of it won't.
You do understand that maintaining a viral load of 50K on Truvada and isentress has resulted in resistance to two of the most useful HIV drugs, don't you? (If you haven't developed resistance you wouldn't be detectable).
Personally if I had a viral load of 50K I'd feel I was being poisoned every day. I would say 'each to their own' but the evidence from a whole bunch of studies starting from the incredibly persuasive SMART study is that your risk of everything from dementia to heart attacks goes up if you're not on ARVs.
It's good your CD4s are keeping up (your count is but an HIV viral load is still detrimental to the health even if you have high CD4s. I've known too many people who've had a sudden CD4 crash too. I hope you remain healthy on your choice but I assure you ARVs these days are far less toxic than they were and you shouldn't regard it as a defeat if you have to start again.
Gus Cairns, Aidsmap (Undetectable since 1998).
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Comment by: ScotCharles (Los Angeles) Mon., Jan. 27, 2014 at 2:49 pm EST
Resistance is transitory. I know numerous people who developed resistance to a drug switched to another, developed resistance to that one and so on and so on eventually returning to the first drug they started with. As for HIV poisoning my system, despite viral suppression you still have 120,000 copies of HIV in your body. Hidden HIV isn't counted in that number and is attacking sleeper CD4 cells that release cell killing chemicals into your system as does the 120,000 copies of measured HIV. The real unstudied group is those of us who have had the virus 30 years more. We are the true predictor group of what are the long term effects of HIV infection. It is important to eliminate those people who claim infection because of inclusion in the hepatitis study. If all those people were in that study it would have been a 100% sample.


Comment by: phillip r. (Los Angeles) Tue., Jan. 21, 2014 at 8:34 pm EST
Re long term side effects I can comment. Started AZT in 1990. Poz since maybe 1983. Have no butt and a hiv early meds small belly, but can still dress with the proper fit clothes around that and look real good. Bottom line, side effects vs being DEAD 20 yrs ago? Now that's a no brainer. Since when has growing old been easy in the first place?
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Comment by: Tim (Kansas City) Tue., Jan. 21, 2014 at 7:46 pm EST
Although I respect your personal experiences, they do not qualify you to make the claims you assert in this post. I am troubled that your opinions are being published here without rebuttal.

One person does not make up a scientific sample. The persistent variable in all of the side effects you describe is your own body. Please do not publicly generalize on matters well outside your professional competency. As a community, our best bet is to follow scientific consensus, which currently suggest that quality and quantity of life are both improved by early intervention.

I apologize if this seems harsh. I don't mean to minimize the many years of suffering you endured. Long-term survivors are an inspiration to me. I consider myself fortunate to have been diagnosed so late in the game, and Iím grateful for your generationís courage and fortitude in fighting HIV/AIDS at a great personal cost. But here, in this case, you have stepped over the line.

Best wishes to you.
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Comment by: Ted (Louisville ) Sat., Jan. 25, 2014 at 12:23 am EST
Dr. Young did give a rebuttal. In fairness, I was sent this link and didn't see it posted with the original.

http://www.thebody.com/content/73699/hiv-undetectability-unimportant-wrong.html?ic=sanext
Comment by: ScotCharles (Los Angeles) Mon., Jan. 27, 2014 at 2:33 pm EST
All of the studies lump people with HIV together regardless of years infected. What needs to be done is a study of people with 30 years infected eliminating those people who claim longer infection due to inclusion in the hepatitis study on gay men. If all the people who claim to have been in that study it would have been a 100% sample.


Comment by: Reginald T Brown (Brooklyn, NY) Fri., Jan. 17, 2014 at 4:06 pm EST
I am sorry that you experienced those side effects. I experienced adverse reactions until I got a 'cocktail' that works with zero side effects. We do not know the long-term effects because was stated, 'we are guinea pigs'. However
Viral undetectable status should be the goal. I was diagnosed HIV+ in 1986, AIDS 1997. My viral load has been suppressed since 2003. It is the same cocktail with 2 meds dropped and replaced by one. NO adverse reactions. I am proof that viral suppression without adverse reactions is possible. As long as something is possible why not try it and live until you die?!
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Comment by: ScotCharles (Los Angeles) Mon., Jan. 27, 2014 at 2:28 pm EST
Look into taking the VACS test developed by Yale University. My five year life expectancy is 83% and I have a viral load of 50,000. You do need to poison yourself with PI's that severely limit a class of enzymes known as CYP's that are important in eliminating toxins and lipids from the body.


Comment by: Rhiannon (Louisville) Fri., Jan. 17, 2014 at 11:00 am EST
Wow.. this was great. I almost feel as if I wrote it.. your the first man I know who feels the same way I do..I thought i was alone but I see that Im not..
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Comment by: Siegfried Schwarze (Berlin) Fri., Jan. 17, 2014 at 3:10 am EST
My experience is almost the exact opposite. I have been on HIV drugs since 1991 - back then my doc was reluctant to prescribe AZT but I forced him to. Of course, some of the earlier drugs (AZT, ddC, ddI, d4T, Indinavir...) had nasty side effects but I closely followed research and as soon as a problem occurred, I switched drugs.
As for today I'm feeling quite well and healthy and any medical problem I am having may well be the result of not having started treatment early enough! (Back then it simply had been impossible).
My viral load has been undetectable ever since I started HAART in late 95 and my CD4s are around 1000.
Today's medication is so much easier on the body (at least as far as we know today) but still I try to minimize the harm done by working out regularly and stick to sensible scheme of nutrition. It has worked for me and for many of my friends.
Your mileage may vary, but I'd recommend anyone with HIV not to wait too long before starting ART.
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Comment by: ScotCharles (Los Angeles) Mon., Jan. 27, 2014 at 2:22 pm EST
Protease Inhibitors all severely inhibit a class of enzymes known as CYP's that eliminate toxins and lipids from the body. I am not a biologist, but I worry the inhibition of CYP's lead to the cancers heart disease, and cancers long term survivors are experiencing.


Comment by: Will (Florida) Thu., Jan. 16, 2014 at 5:01 pm EST
Finally an article that adequately identifies the reality of the dangers and side effects of HAART treatments. The media, (and medical science) wants society to believe that HIV/AIDS is now a "manageable" disease with little to no consequences. Those of us who have traveled the road "KNOW DIFFERENTLY".....Thanks for the write.
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Comment by: ScotCharles (Los Angeles) Thu., Jan. 16, 2014 at 1:07 pm EST
How do you know life expectancy is normal? HIV is only thirty years old, hardly time to make predictions. Besides new evidence shows that the effect of hidden, untreated HIV on the body is dangerous. HIV may not kill as quickly as it did in the past but it still kills.
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Comment by: Dave R (Amsterdam) Sat., Jan. 11, 2014 at 4:25 am EST
Some very wise words here, however the average person faced with the decision whether to start HAART at all, never mind which combination is best, just doesn't have the knowledge as to what's appropriate for his or her situation - they have to go on the advice of the doctor. It's at that point and from then on, that the viral load and T4-cell counts become markers as to how well they are doing under that particular treatment. It's a bit of a Catch 22 situation - you have very little choice in the beginning but run the risk of resistance if you give up part or all the combination later yet it's only later that you have enough built-up knowledge to be able to decide which drugs are good for you and what they're doing to your body. Just as with PreP, I believe the drug companies need to be much more honest about what they know about long term effects of HAART drugs. At the moment you get the feeling that they're still working on the collateral damage theory, that some losses are inevitable but given the expected life-span of HIV patients the future side-effects are negated by early success. Now that the life expectancy is practically normal, they need to be concentrating on long-term side effects much more rigorously.
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