For Me, HIV/AIDS Is Not a Chronic, Manageable Disease
June 8, 2010
I am not a researcher -- I can only speak from my own experience -- but far too many people mistakenly believe that HIV no longer causes chronic illness because of the potent anti-retrovirals available. Over the last five years in particular, I have become aware that both doctors and the non-infected public have the ill informed opinion that HIV/AIDS is completely controlled by medications. The belief that HIV/AIDS is no longer a health threat has caused many to become complacent about avoiding infection and has also caused many to view the illnesses of the HIV infected as unimportant.
Most people do not know that the anti-HIV meds do not eliminate all the virus from the body; they merely reduce levels of the virus to undetectable levels, or less than 75 copies per milliliter of blood with commonly used tests. At these undetectable levels, the blood of a 180 pound man may contain as much as 431K copies of HIV.1 That viral load does not include the unknown thousands of HIV copies lurking about the body. At these levels the virus still has an inflammatory effect on the body.
This volume of HIV also creates an environment in which over time the virus can mutate and become resistant to medications. We have been lucky thus far that researchers have been able to develop new meds that attack the virus at different stages in its replication cycle. However, researchers are beginning to find that despite treatment with anti-HIV medications long term HIV infection causes physical and neurological damage. A recent article in New York magazine summarized these research results.2
I am particularly interested in the neurological effects of long term HIV infection. I was diagnosed with HIV infection in September 1984. In 1994, my personality dramatically changed. I went from a happy-go-lucky guy to an angry guy who would pick fights over the least insult. People at my church became so concerned about my behavior after a series of noisy fights punctuated with expletives that a member of the church's governing body, the Vestry, accompanied me whenever I was at church. I would stare balefully at people in restaurants if I thought they were insulting me. Once I licked my lips in a suggestive manner while staring at a woman in a restaurant.
The acme of my misbehavior was one morning that I hit a woman, terrorized another by lying on her car hood as she tried to drive away from me and spit at another woman. I was nearly arrested and was sued for 2 million dollars for emotional distress. That case settled out of court for lawyer's fees. At graduate school in Scotland in 2002-2003, my behavior was more controlled but I did get into a fist fight with a Canadian guy who hated Americans.
I came back to the US from my sabbatical in 2003 and again took up my work as a Supervisory Investigator in the Los Angeles office of the government agency for which I had worked for fourteen years. My work was very demanding as I supervised a team of ten investigators who performed complex audits of the investments of private pension plans. Four months after returning to work I contracted pneumocystis pneumonia and was out on sick leave for two months. The next year I began to have pain in my feet that made walking difficult as well as episodes in which I lost strength in my arms and legs that caused me to walk with a weak, shuffling gait.
Soon after I began to notice that my concentration and memory were not as they had been. During this time, while giving a lecture to two hundred paying students, I suddenly lost my ability to explain my topic and could not answer students' questions. I had given lectures on this same material for years; but, as a result of that humiliating experience, my Agency never again allowed me to deliver lectures. I also had several loud arguments with neighbors during this time, one of which resulted in a call to the Los Angeles Sheriff's Department.
My declining cognitive capabilities caused me no end of trouble at work. I was constantly forgetting things. My analytical abilities, for which I was famous, deteriorated alarmingly. I began to have wide swings in mood so that I was either hyper energetic or so sad that I spent hours staring at the wall. My employees were shocked by my energetic periods because I became a different person.
In 2007, my Infectious Disease Specialist, Dr. Kimberly Shriner, referred me to a neurologist at UCLA, Dr. Elyse Singer, who is an experienced HIV/AIDS neurologist. After a year of tests, including a three day psychological exam, Dr. Singer diagnosed me as having early second stage HIV dementia. The diagnosis was a shock and I became suicidal. One threat was so believable that my partner and Dr. Singer planned to have me placed on a 72 hour hold at a psychiatric hospital. After a two hour telephone call between Dr. Singer and me, she changed her mind on the need to have me forcibly detained.
Shortly thereafter, I began to see a psychiatrist who diagnosed me as having bi-polar disorder, major depressive disorder, and mild dementia. I told him during one of our sessions that I could communicate with the dead. For years I had seen ghostly images and heard voices speaking to me; however, this so-called psychic ability was merely the result of HIV damage to my brain. The psychiatrist started me on a course of antipsychotics and antidepressants. With my depression under control, I realized how depressed I was before starting medications. My hallucinations stopped and I no longer communicated with the dead.
At the same time I was diagnosed, I began to notice that the men in my AIDS support group all complained of depression and many of them spoke about periods of hostility and inappropriate behavior. All of these people have had HIV for ten years or more. This observation convinced me that many people with long term HIV infection have significant neurological damage. One member of my support group has neurological damage to the point that he walks on his toes with a shuffling gait and has severe major depressive disorder that is not adequately treated by antidepressants.
As Dr. Singer, the UCLA neurologist, explained to me after she gave me my diagnosis, HIV infects cells in the brain that, when they die, release chemicals that cause adjacent brain neurons to die. This infective process can go on despite anti-HIV meds because the blood-brain barrier excludes some drugs from the brain. [View a chart of several HIV meds and their level of penetration of the blood-brain barrier; or read a discussion on brain-related complications and HIV/AIDS between TheBody.com's editorial director and noted HIV/AIDS specialist Pablo Tebas, M.D.]
The primary targets of HIV are the mood controlling structures in the brain and then later the cognitive parts of the brain and then those parts that control the limbs. The cognitive effects of HIV infection are primarily in the executive brain functions which allow us to choose between competing actions, to assimilate new information, and to analyze data. Because the executive functions are most used by professionals, early HIV dementia is most often diagnosed among those people. I am one of those professionals. Due to damage to my executive function, I retired on disability in 2008.
We have learned that not only can HIV cause psychiatric problems; it can also cause osteoporosis and early onset osteoarthritis. I have both. If you Google "HIV + Aging" these days you get numerous citations. This is a hopeful sign. However, many doctors and the non-infected haven't gotten the word that HIV is not entirely controlled by meds and that significant amounts of the virus remain in the body. Over time, HIV ravages the body, leading to what are normally the diseases of old age, dementia, osteoarthritis, and osteoporosis.
HIV is not for the faint of heart. The foolish people who advocate bare backing sex are inviting infection. The non-infected public dismisses the health complaints of the HIV infected in the mistaken belief that HIV/AIDS is cured. Ill informed doctors do not listen to their patients who complain of cognitive decline.
It is my fondest wish that all people become aware of the long term effects of HIV infection and either avoid infection or receive care from well informed clinicians; and, that the non-infected public renews their compassion for those infected by HIV. I believe there is hope for the newly infected. Researchers across the globe are doing important work on the effects of long term HIV infection.
When I first visited Venice, I became lost looking for the Church of Santa Maria della Salute, where the miraculous Black Madonna is housed. Normally, the vaporetta lets you off at the Church, but on this day the Venetian fisherman were on strike in front of the Church and the vaporetti in sympathy with the strikers were not making that stop. My partner and I were let out at the next stop which is some distance from the Church.
Venetian streets do not follow a logical pattern and maps are nearly useless to find one's way. After two hours of wandering the back streets of Venice, we had given up on ever finding the Church when we chanced upon a door over which was written Anchiave Espero -- "There is Always Hope." We took the next right turn after that door and there were the steps leading up to the Church. Over the gates to Dante's hell are written the words "Abandon All Hope Who Enter Here". Even with all the bad news about long term HIV infection, we must continue to have hope if we are to continue to find our way.
- At 70 milliliters of blood per kilogram of weight, 70 * 82 * 75 = 431K
- David France, New York Magazine, November 1, 2009.
Read ScotCharles's blog, Life Is a River.
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This article was provided by TheBody.com.
Comment by: H.Grant
Thu., Dec. 30, 2010 at 8:39 am EST
Thank you. It's time for the general public to be aware that just because we now (thankfully) have drugs that inhibit the growth of HIV to full blown AIDS it does not mean the individual is cured or that they live a normal life. These are toxic chemicals and taken over a long period of time, ravage the body and brain. Yes, those of us with loved ones with HIV are very happy for these drugs but we also know it's no picnic for anyone taking them.
Comment by: scotcharles
Fri., Nov. 19, 2010 at 2:31 am EST
An EEG by itself would never discover HIV Associated Dementia and I seriously doubt Dr. Singer diagnosed you with such limited data. I am angered that you would malign the name of such a noted AIDS researcher as Dr. Elyse Singer who has studied the effects of HIV on the neurological system since the 1990's. As evidence of her stature as an HIV researcher, she recently received a grant from the NIH to further study the effects of HIV on the immune system.
Dr. Singer in my case confirmed the diagnosis of HAD formed by Dr. Charles Hinkin, Ph.D, a noted researcher in HIV Associated Dementia.
If you have been able to continue working, I applaud you. However, you seem to have anger issues, which I am sure are accompanied by depression. Your writing style is combative. I'll bet these are new emotions for you.
My dear friend, these maybe signs of HIV Associated Dementia.
I wish you much peace.
Comment by: Erik
Wed., Oct. 20, 2010 at 7:03 pm EDT
All I can say is WOW!!! I am so glad I saw this as this is EXACTLY what I have been experiencing the last year or two....THANK YOU Scott, THANK YOU! I have had this disease for 10-11 yrs and went on disability in 2007...I took medications the first 3-4 yrs off and on, but the toxicity and side affects of the medications in 1999-2001/2 were debilitating in many ways, I stopped all treatments (medicinal as well as infectious disease specialists). Approx 5 yrs ago the Kaposi's Sarcoma lesions on my lower legs and was told that with this, I am now classified as AIDS infected. In 2006/7 I was ready to resume treatments again, but when told that I was to be put back on the 'NEW' antivirals to bring my numbers up enough to undergo radiation/chemo therapies....I chose to ignore all treatments again because I did not believe in bringing my numbers up just to destroy my immune system with the radiation/chemo treatments.
The next several years I have been fighting Severe Drepressive issues which I believe has caused my personality to change dramatically. I was a completely different person. My close friends would tell me that they missed their 'old Erik'. That is how DRASTICALLY I changed. Many have stuck with me through this, even though I have become extremely reclusive, and seldom leave my home.
I am, at the moment, ready to find a specialist and resume treatments, however, the drive I have now may not be there nxt week, or even tomorrow.
Scott, this article has given me HOPE, and I thank you...Even though I am slowely going mad, the insight from this article as to whats been going on with me/myself/I, has made me smile, happy, and for the moment hopeful for mysef, family, and friends in this 'Alice in Wonderland' journey that I am on..
Again THANK YOU Scott, Thank You. You are my bigest hero here and now, today. My heart is singing and that has not happened often in the last several yrs.
Replies to this comment:
Comment by: ScotCharles
Fri., Dec. 17, 2010 at 11:21 pm EST
I share your belief that the AIDS meds may be harmful in the long term; but, currently the meds are all we have. Your choice to forego treatment with the meds is your choice and I support you in that. Many AIDS specialists hold to the belief that treatment is not necesssary until the CD4 levels drop to 200. However, you should consider the damage that HIV does to the neuroligical system. A lab result that shows the virus is undetectable does not mean the virus is not present in your body. However, the result does mean that possible neurological effects may be minimized thus prolonging the onset of neurological sysmptoms.
My experience is that even low levels of HIV over time may lead to neurological symptoms. However, my case is peculiar to me and should not be extrapolated to the general HIV+ population.
I am glad that you have found in my experience a parallel to yours. Depression is a horrible disease and I hope you find an effective treatment. The anger you describe is something to which I can relate. A competent psychiatrist should be able to alleviate that problem for you.
I gave my psychiatrist for Christmas a self portrait of me that I did before I started treatmet with him. The portrait portrayed an angry person. My dedication of the portrait said that I was grateful he had helped me move from hate to peace.
I wish you peace,
Comment by: Bernard M.
Sun., Jun. 19, 2011 at 3:08 pm EDT
Thanks Scot. I really enjoyed your article. I developed full-blown AIDS in 2001, if I remember correctly. Based upon my genotype test, my doctor seems to think that I was exposed in the early 80's. In 2006, I did start to notice a marked decrease in my executive functions. In 2008 I think, I was formally diagnosed with HAD. During my working career, I designed guidance and instrumentation systems primarily destined for US Naval surface ships and submarines. It is very difficult to have your higher brain functions slowing ripped away. I have extreme dificulty reading and comprehending what I have read. Sometimes I must reread a single paragraph 10X just to get a basic grasp of what the author is trying to say. Also, my skill with numbers is also markedly altered. It is very frustrating because so few neurologists are aware of how HAD effects long term survivors of AIDS. I find is increasingly difficult to take care for myself in a responsible fashion. As you know, when the memory (especially short term) starts to go, it is extrememly frustrating. I also battle with deep depression as well as very real suicide thoughts. I am now on Social Security Disability and work part-time, 4 hours 2x p/week. I think if I did not have this part time job, I would have ended it a couple of years ago. I get paid very well to basically change light bulbs compared to what I was one able to do. Keep up the good fight and at least you have someone to help you along. I do not and that is very scary! Once again, thanks for your insight!
Comment by: Deryck
(Los Angeles, CA)
Thu., Aug. 26, 2010 at 12:45 am EDT
I find your resignation very sad. Dr. Singer, without so much as an EEG, diagnosed me with AIDS related dementia. She has no business diagnosing anyone given her obvious mental issues including her morbid obesity. It took me a long time to recover from the experience with her, but I use natural remedies to heal my body and my brain is in tip top shape. I stopped my meds over two years ago and my viral load is undetectable. I am a working musician, 180 lbs of mostly muscle and thank my ability to weed out falsehoods about HIV spread by quacks like Singer. Consider the source.
Comment by: ScotCharles
Sun., Aug. 15, 2010 at 4:28 pm EDT
Thanks for the post.
Dr. McGrath's work is important and his company Pathologica LLC may soon hit upon a therapy that addresses the two amino acids he is working with; but, other researchers believe there are more amino acids involved in the destruction of brain cells and the disruption of nerve signals.
At any rate we are years away from an FDA approved drug, which will be very expensive, and may not be covered by pharmacy plan formularies for years after that.
I stopped reading reports after I read one that found that people with early stage HIV dementia are at an increased risk of Alzheimer's.
I am starting to realize that a state of benign denial may be best with all this.
At any rate, the day is cool today and I need to tend to my garden.
Comment by: Mariel S.
(New York, NY)
Wed., Aug. 4, 2010 at 4:56 pm EDT
There was a very exciting presentation by Dr. Michael S. McGrath from UCSF at the XVIII International AIDS Conference showing that two aminoacid substitutions (101H and 181V) in the viral Nef protein are associated with HIV-associated dementia (HAD). A small company called Pathologica LLC is developing a therapy for AIDS-related dementia that targets HIV infected macrophages. The data presented by Dr. McGrath supports this approach.
Comment by: ScotCharles
Mon., Jul. 19, 2010 at 1:07 am EDT
In reply to Eric:
I regret that I only included my inappropriate behavior with women in my blog. Those instances were the ones I beleived were the most egregious. There were many others involving men as well. I was never inappropriate until beginning in 1994, even then my behavior was more controlled than it became in later years. My best friend from 1990 to 1994 was a woman named Beth from whom I learned a great deal. I was also able to return to a more peaceful state than I could in later years. The problem was that I could not control my anger which flashed from a little spark to a raging conflagration. As the years wound on from 1994 to my diagnosis in 2008, my behavior became more inappropriate in that I made disturbing comments or my emotions were not in keeping with the situation. The psychoneurologists who tested me in 2007, found that I had significant damage to the mood controlling centers of my brain. After my diagnosis, I realized that many of the memebers of my AIDS support group had similiar experiences. The condition has progressed to the point that I have severe panic attacks when I am in a confined space with people, such as in church, at a party, or in the grocery store. Prior to the increase of my symptoms, I was an accomplished public speaker and a very gregarious person.
Comment by: Tecknique
Sat., Jul. 10, 2010 at 6:53 am EDT
Congratulations on such a well written article, amazing with the accompanying disabilities you have to bear..I too am considered a LTS diagnosed 94 . Only on Meds (Atripla) for the last 18 months. after a personal trauma threw my immune system into a chaotic frenzy..My whole immune system broke down with every OI infection jumping on board at the same time resulting in my early predicted demise..Having no alternative but to take MEDs Or Die an agonising Death.( for the sake of my children I reluctantly agreed to take these Meds one pill a day ha! (joke ) myth. Yes I was aware of all the friends I had lost over the years to early Meds and was determined not to comply. Mind over matter approach ludicrous in the end Now 18 months on I am able to function quite normally again and have never been in better health.So much to say that i intend to travel abroad to meet fellow LTS at the end of the Month at the Gay Games in Germany.. My friend is a LTS survivor of 30 years and is actually competing in the Ice skating championship going for the Gold
A Truly remarkable achievement hope and inspiration to so many...Myself and fellow LTS will be there to support him . and will hope to be demonstrating the immense strength of mind us LTS have in common.. I laugh at those who devastated my life back then with the news I only had 6 months to live !! I have managed to live long enough to see my children grow and am now enjoying watching the second generation going to secondary school something I never thought I would see .I now have 5 grandchildren since diagnosis. Truly wonderful , But I sincerely do believe if I had succumbed to taking drugs of earlier days I would not have been able to see the events take place...So please celebrate with us at LTS group of HivAidsTribes.Com..And the imminant Forthcoming event in July at the Germany Gay Games We hope to raise the awareness of how to LIVE with this disease...
Comment by: Scott
Wed., Jul. 7, 2010 at 10:49 pm EDT
For someone with so many past problems you write beautifully ScotCharles. I am both proud of you and me. But I worry for us as well. Good luck. We are strong.
Wed., Jul. 7, 2010 at 1:35 pm EDT
It is amazing. Is it all because of the HIV, sir? I don't think so.
Comment by: Eric
Tue., Jul. 6, 2010 at 9:32 pm EDT
To be honest I have mixed feeling about your post. I appreciate your brave honesty and am glad that others that share your issues and symptoms are able to find a source of community and mutual experience. On the other hand, the newly infected reading this must pretty mortified - and given no source of light or inspiration - just cause for further depression. Also, it is not clear to me how much of your behavior (especially your extreme treatment of women) has to do with HIV or HIV meds and how much is related to your own genetic factors and personal psychology. In any event, best of luck on tackling the tough issues you're facing.
Comment by: Teresa
Sat., Jul. 3, 2010 at 1:52 pm EDT
Thank you. I appreciate the newly diagnosed positive thinking but.... The reality is as you state. I have had hiv for 13 yrs. My body has been ravaged. I had adverse reactions to many of the meds. I have lipodystrophy bad as well as alot of muscle pain. The drs are giving me 2 to 5 yrs before I will be in a wheel chair. My husband gave me hiv. He couldn't live with the guilt and drank himself to dealth. There is so much about the disease of Hiv and Aids that is being pushed to the side because of " great new meds". There is side effects to these meds that can and do destroy the body. Don't get me wrong without the meds I would be dead and my son an orphan. I am grateful to be alive but the day to day pain is a challange to live with. It does beat the alternitive. Thanks for keeping it real. It helped me feel less alone. You can fight a battle alone but to win the war you must have help. thanks for listening.
Comment by: Riverwide
Sat., Jul. 3, 2010 at 12:22 pm EDT
I personally think that all Hivers stories are relevant and all of them combined describe this "managable" disease. Managable does not mean easy or inexistant! Managable means you can actually deal with it and not die! Some of us have a tougher time then others coping with HIV but the bottome line is that the majority of us are still alive! Doesn't this already mean something?
I also tend to reconduct all my health issues to HIV but most of the time I face the fact that they're mostly related to my attitude towards HIV. My point is that everyone (POz and NEg people) has his challanges in life and has to learn to cope with them. Being negative doesn't mean automatically that you're prefectly healthy compared to a HIVers. Sometimes I feel that we, HIvers, tend to see the world too much Black or White. If you're Neg you're fine and happy, if you're POz you're sad and sick! Well that is not the reality and it often turns out to be an excuse for all of our issues! Today as a Hiver I can work, travel (not everywhere unfortunately) and plan my future. Will I be sick at times? Yes I probably will but so will a neg person. We can all share our stories: some will be happier than others, some will be very sad. This simply means that a disease that is not cured is still a disease! Managebale doesn't mean "solved", but I still love this word 100 times more then death.
Comment by: Jack
Sat., Jul. 3, 2010 at 12:05 pm EDT
I felt very sad when i read the article written by Scott on long term effect of HIV who is on medication. Im positive and seroconverted 8 months ago. I am lost and kinda depressed. However, I began to accept the fact that I am what I am today and moving forward.
Comment by: Tony
Thu., Jul. 1, 2010 at 4:09 pm EDT
WOW! Thanks for writing this article. I've been living with HIV for close to 20 years now and 2 years ago started meds when my t-cells finally got down to 350. I'm also having a lot of trouble with concentration, frustration issues, fatigue and anger. I've been diagnosed with depression and have been on meds for that also but over the last 3-5 years the same cognitive issues that you described in your article are happening.
I don't understand why anyone would say such stupid things about your article and how you feel?? You simply stated how you are feeling and it seems a lot of others feel your pain.
I hope things get better for us long time HIV'ers and more research is done on how long term HIV affects the brain.
Comment by: ScotCharles
(Los Angeles, CA)
Wed., Jun. 30, 2010 at 2:30 pm EDT
in reply to Lloyd.
You say you have drug related dementia. Was that caused by drug abuse, AIDS meds or HIV? I have read recently that HIV and certain AIDS meds (the NRTI's such as AZT, DDi, Videx, d4T, Zerit, 3Tc, Epivir, Abacavir, and FTC) can cause mitochondrial toxicity which may contribute to the onset of dementia
(http://jac.oxfordjourna.ls.org/cgi/reprint/51/5/1091.pdf). I have avoided taking dementia meds because I hear their effect is very limited and these meds are toxic to the immune system.
I wish you all the best as you fight HIV.
Comment by: lloyd johnson
(red deer, alberta)
Wed., Jun. 30, 2010 at 12:14 am EDT
I thought I was the only one in this situation. I agree with your comments totally. Can't understand condom fatigue, barebacking or converssion parties. People still die. I have drug-related demetia and have found Ebixa helpful. Ebixa is a toxic mix with all my meds but can't safely remove it now. All my community died in the early 90s. People now don't know those times and I suppose that makes them oblivious to some realities. I wish you all the best and good for you to be speaking out.
Comment by: Tim Hunt
Tue., Jun. 29, 2010 at 6:48 pm EDT
From wikipedias AIDS page section Neurological and psychiatric involvement:
"Prevalence is 10–20% in Western countries but only 1–2% of HIV infections in India.
This is due to the turmeric consumption in India.
It's turning out that turmeric is becoming known as extremely protective to the nuerological system.
Comment by: Dave
Mon., Jun. 28, 2010 at 7:56 pm EDT
My heart goes out to you ScotCharles, you continued through many challenges and came out on top in the end. I am sorry for your health condition as I suffer from chronic problems as well suffering from aids related Crytococcal menegitis and now an enlarged parotid gland. I have made peace somewhat having had to give up a promising career as an electrician and having worked for 28 years only to medically "retire" at age 47....I feel I can relate and only hope my words can give you solice in knowing you are not alone in your struggle and continued fight for living humanly in an inhumane world.
Comment by: ScotCharles
(Los Angeles, CA)
Mon., Jun. 28, 2010 at 11:41 am EDT
Up to now, I have confined my replies to those who wrote negative comments. I hope I have been fair with them. I should like now to reply to those who wrote that they have neuroligical complications of HIV infection.
I sympathize with those of you who cannot obtain effective treatment. Many HIV experienced doctors are either not aware of this problem or beleive it is a psychological problem outside their purview as infectious disease specialists. The sufferer becomes frustrated with medical professionals who dismiss his symptoms as minor which for me led to an increase in the severity of my symptoms.
You do not have to suffer in silence. The Body had at one time a booklet on HIV Associated Neurological Disorder that could be printed out to give to your doctor. I can no longer find the link for the booklet. Perhaps the moderators of this blog can furnish that link. If your doctor isn't aware of the neuroligical complications of HIV infection, you must take it upon yourselves to educate them.
Get help for depression and do not listen to people who tell you to cure yourself by cheering up. Depression is a miserable disease. I spent three months in bed thinking of suicide every minute of every day. Those three months were the worst time in my life. I am very fortunate that simple medications snapped me out of depression.
Anxiety is another problem that many people with HIV have. Simple anxiety about the outcome of infection is to be expected; but, when anxiety becomes generalized or leads to panic attacks professional help is necessary. For me anxiety means I cannot drive a car. I cannot go out in public unless I take anti-anxiety medications to prevent a panic attack. My psychiatrist has explained to me that my anxiety and panic attacks are caused by damage to my brain which has limited my brain's ability to produce chamicals that control sensory input.
Speak up. Get help. Eliminate stress. Breathe. Make time for you. Love.
Comment by: Steve Mason
(Miami Beach, FL)
Sun., Jun. 27, 2010 at 10:06 pm EDT
What a truly outstanding article! My partner has suffered with AIDS for the past ten years, and his (our) lives have been very, very difficult. His HIV led to heart problems and diabetes, and his cross has been heavy, both physically and emotionally. Too many people still believe that the world is open and accepting to people who are gay with AIDS, and although there are many lovely people, there are many who are judgmental and just plain ignorant. I feel great concern for young people because AIDS is almost handled like an afterthought instead of the potent killer and life destroyer that it is. They have no clue of what they're doing when they prance around bragging about taking it bareback or skin to skin. May the author of this article continue to be blessed and never forget that his example is a shining light to many others who struggle silently with the many faces of AIDS. There is still too much social stigma and too many AIDS sufferers who are alone and lonely. Never getting AIDS is by far the best solution to this problem.
Comment by: Paul
Sat., Jun. 26, 2010 at 5:39 pm EDT
I am surprised at people who are kind of lashing out at ScotCharles when he has written something very valid. He is not the only person to experience this. He has seen similar problems in people in his support group. I think he does the world a favor by showing what some of the problems are person can experience are, even with a low VL and a high T-cell count. Every person experiences an illness in their own way and this is a new disease. He isn't trying to scare anyone newly diagnosed. He's talking about what can still go on in your body even as you are on HAART. Your warning about safe sex and not discounting HIV/AIDS as cured are well-taken, and I thank you for this article. The medical community and the world need to listen.
Comment by: ScotCharles
(Los Angeles, CA)
Sat., Jun. 26, 2010 at 2:50 pm EDT
in reply to Fred,
I am very thankful I am alive after 26 years with HIV. I have outlived everyone I knew in my twenties; I have even outlived all of the members of an HIV support group I attended in the '90's. During my time with HIV I have been given the gift of love from my partner of 30 years, the joy of doing work that made the world a better place, the financial resources for a confortable retirement, and quality health care.
The goal in this blog entry is to spotlight a problem that effects long term survivors for which many of us receive neither treatment nor compassion. I purposefully wrote the blog so as to give hope to the newly diagnosed. There is a great deal of hope for effective treatments not only for long term survivors but also for the newly diagnosed. However, as in the early days of the HIV epidemic, we cannot afford to suffer in silence.
Comment by: Fred
Sat., Jun. 26, 2010 at 1:58 am EDT
It is definetly not the same to get diagnosed in 1984 than getting diagnosed today, you should be thankful youre alive, instead of doctrinating fear to new infected.
Comment by: ScotCharles
(Los Angeles, CA)
Fri., Jun. 25, 2010 at 4:38 pm EDT
In reply to T-Rex,
Some of the chemicals that make up HIV and the chemicals that cells killed by the virus release damage the central nervous system. Symptoms of HIV related brain damage are may include depression, memory loss, a slowing of mental and physical response time and sluggishness in limb movement. (See http://www.rense.com/general44/brains.htm) What is significant in the research is that even at suppressed levels this damage continues.
You are to be congratulated for maintaining a positive attitude about HIV and AIDS. For many years while I lived in Tiburon, California (across the bay from San Francisco), I attended support group sessions at the Center for Attitudinal Healing. The center was founded by Dr. Jerry Jampolsky, a psychiatrist who came to believe that fear alienated us from our true selves. This fear could be fear of illness, or failure, or death, or loneliness, indeed anything that disturbs our soul's peace. He wrote a wonderful book on Attitudinal Healing, Love is Letting Go of Fear, which is available on Amazon.
Comment by: alfstoria
(Astoria , NYC)
Fri., Jun. 25, 2010 at 3:12 pm EDT
Even thought, I am sure that was painful to wright that extraordinary articulate. I always though the same, is not as one chronic disease is several of them in one body and the medications are so toxic but they outweight the benefits vs the damage, I guess. Thanks for putting this out, also I want to mention that is a "Disease" that you can infect somebody you LOVE, you partner. I don't have one now but if I would, regardless of his status, is always a concern about Infection or re-infection. There is really few "Chronic Diseases" that you can infect someone that make loves to you.
Comment by: Kevin Coutts
Thu., Jun. 24, 2010 at 4:12 pm EDT
Wow!! What a fantastic article!! Ive been struggling with depression for years now and have just received a diagnosis of Borderline Personality Disorder/Bi Polar and depression. I can relate totally to pretty much everything you said! This article has gone some way to helping me realise that Im not alone in the way I feel and sometimes act!! I will be taking this to my Drs on my next appointment!Thanks ScotCharles!! I also note your comments on barebacking!! I always practice safe sex. However my ex is one of a long list of guys I know who does not. My HIV+ ex has recently been dignosed with Hep C as well. Now he has had to change his regime as the HEP C treatment has interactions with his HIV medication. He still practices unsafe sex with multiple partners and group sex parties. He feels it is everyone elses job to protect themselves from him. This thought process however has led him down the HIV+/HEP C coinfection. This could have so easily been avoided by practising safe sex. I think we all need to realise. WE NEED TO PROTECT OURSELVES AS MUCH AS OTHERS! Theres a lot more damage can be done than just HIV by practicing unsafe sex. I think the medical profession also need to realise that ageing and HIV do not make a good combination as we are now seeing in the HIV community!!.
Comment by: Robb Dougherty
(Corpus Christi, TX)
Thu., Jun. 24, 2010 at 4:06 pm EDT
I too have had a hard time managing my HIV. Diagnosed in 2004 with AIDS I immediately changed my lifestyle in order to get ahead and hopefully add a few years to my sentence. Within the last 6 years of being diagnosed I have had issues with high cholesterol, blood pressure, anxiety, insomnia, hypogonadism which in turn leaves me extremely fatigued, irritable and sometimes depressed. I have also developed severe allergies and am prone to chronic bronchitis and some of my medications do not allow me to spend too much time in the sun so I tend to be indoors quite a bit. I focus on my physical health daily and begin my day with 2 hours at the gym but that seems all I am able to do and by noon am ready to sit the rest of the day out. All of my medications are taking their toll on my body and even though my T-helpers are above 1000 and my viral load is undetectable, my condition is far from "managed". Im so glad to have read this article as I was beginning to drive myself crazy wondering if the frustrations Ive been having were the result of my current relationship(which has never been a problem) or a direct effect of my health condition. I recently applied for disability but doubt that it will be approved the second time around but I will keep on trying. Until then, I can only hope that my condition doesn't reach a point to where I am unrecognizable as the person that everyone once knew. Peace to everyone!
Comment by: J
Thu., Jun. 24, 2010 at 3:59 pm EDT
Thanks for the article. I've been positive for 27 years and one of my greatest fears isn't dying of complications, but of losing my mind. This is a field that needs more research and treatments. I'm still very amiable to people, but I argue with my family at the drop of a hat and towards the end of my college years I found it harder and harder to concentrate and study on the course work.
Comment by: martin
Sun., Jun. 20, 2010 at 5:49 am EDT
thanks for making everyone hope that got infected with HIV at a young age
Comment by: T.rex
Sat., Jun. 19, 2010 at 3:02 pm EDT
If you all are gonna brag about how 'sick' you are, i'll one-up you and brag how well i am... Poz for 8 years, and no meds or even tcell counts in that entire span.
Healthiest i've ever been, go to the gym 4 times a week....
sure, when i was first diagnosed, i had a host of cognitive problems, memory lapses, depression, mixing up words.... but i got over it as soon as i realized i was not dying, as they lead you to believe.
HIV is not some magic little be-all end-all culprit for all the woes in your life... Do you actually think a virus that 'supposedly' is dangerous for killing tcells has ANY effect on your brain?!?? how?! what is the logic in that? Your brain is messed up, plain and simply because you are depressed, not hiv. Its been shown in studies that stressed-out, depressed people have inflamed brains.
Its the meds side effects and your beliefs that are the cause of your woes.
I'm sure people will argue, but you can't argue with my health verses your health, so what case do you have?
Comment by: ScotCharles
(Los Angeles, CA)
Sat., Jun. 19, 2010 at 12:32 pm EDT
In reply to JoJo,
The New York magazine article I cite as well as an earlier article in the New York Times(see Jane Gross, AIDS Patients Face Downside of Living Longer, New York Times, January 6, 2008) discuss the issues of HIV and ageing. I too wrote, while HIV+, a dissertation on the effects of ageing populations on investment choice by pension plan trustees in 2003 for my degree from The University of Edinburgh, Scotland. There are numerous studies done by eminent researchers in this area(see http://www.liebertonline.com/doi/abs/10.1089/08892220260387931 , http://www.natap.org/2010/HIV/060310_04.htm , and http://www.dovepress.com/ccl3-genotype-and-current-depression-increase-risk-of-hiv-associated-d-peer-reviewed-article-NBHIV ) .
I am no researcher, but evidence does seem to be building that long term HIV infection may lead to cognitive decline. You are very fortunate that you are not affected. If you have had HIV for 25 years, then you went 10 years without portease inhibitors and problably took AZT, zerit, epivir, ddI or ddC as protease inhibitors did not come into general use until 1995. The viral load test back then, if your insurance would pay for it, defined undetectable as 500 virus bodies per mililiter of blood, or about 2.87 millions of virus bodies in a normal male . The brain is an amazing thing. It can recover from HIV damage; however for some of us the damage is too great for recovery. I went from doctor to doctor to find a reason that my legs were so profoundly weak that at times I could not walk and for my cognitive decline. I was fortunate that Drs. Elyse Singer and Charles Hinkin, who have years of experience in the area of HIV and the Central Nervous System, were able to diagnose my condition.
Comment by: Jojo
Fri., Jun. 18, 2010 at 2:59 am EDT
The writer has told a disturbing and compelling story. However, he makes generalizations no less than the non-infected public that he critiques. Despite what he says about complacence, too often HIV blogs perpetuate the stereotype that people with HIV are frail and ailing. The writer was clearly symptomatic and had a low CD4 count at one point at least. this is saddening but this is not a given for all. I have had HIV for 25 years, and twenty years ago I acted out my anger due to my perception of social stigma rather than because of the HIV infection itself. Nowadays my virus is undetectable and I am pursuing a rigorous PhD degree, writing a dissertation, teaching, and being successful in winning prestigious grants, so my cognitive abilities seem to be holding up so far. I am not pretending to be unique; if the damage due to HIV was not too great, it should certainly be possible to live a robust life while on therapy. The blogs the writer cites report projections based on very broad populations without providing details about viral load, age, past illnesses, non-HIV problems such as substance abuse, duration of anti-HIV therapy, and so forth, among the study groups. the writer has described one extreme end of a possible range of health statuses, which would just as easily describe the non-HIV infected population. His experience is by no means the norm.
Comment by: ScotCharles
Wed., Jun. 16, 2010 at 2:48 pm EDT
In reply to Mr. J;
My ill behaviour was not confined to women as my blog shows. My ill behaviour was not a result of premature ageing, but of HIV caused damage to the mood controllers in my brain. My psychiatrist assures me I have no repressed anger issues; extensive psychological tests have confirmed that finding. Yes you are right some long term survivors do not have this issues; indeed, some long term survivors have no HIV/AIDS symptoms at all and some have normal T cell counts. I am no researcher, but in my opinion from 26 years experience sitting in HIV/AIDS support groups, many long term survivors have behavior issues, including anger; depression; and, cognitive decline. I personally cannot but believe these symptoms are HIV related. I did not mean to alarm people as may blog clearly states there is hope for effective treatments. The purpose of my blog is to assure people who have HIV, and behavior and cognitive problems that they are not alone. Please read the other comments and you will see how many people are relieved they are not alone in this.
Comment by: Robert Wray
Tue., Jun. 15, 2010 at 5:49 pm EDT
Great article!....good food for thought...I'll be talking with my IDS Doc for sure.
Comment by: Raymond
Tue., Jun. 15, 2010 at 9:30 am EDT
Thanks you for highlighting symptoms and expressions of this isidious illness that i thought were uncommon and not worthy of mention. I have figured all along that these waxing and waning problems were the necessary evils of living with HIV. I am comforted to know others are struggling with these limiting symptoms, which for me, are now more prevalent and worsening.
Comment by: Mr J
Tue., Jun. 15, 2010 at 7:20 am EDT
I think your post is both unbalanced and certainly disturbing to those diagnosed. The fact that you 'physically' attack women and spit at them is not, I believe, a sign of aging with HIV but a sign of repressed anger or emotional issues that need attention and resolving. To blame all your deeds on HIV is a dangerous and crude explanation. There are plently of LTS's that do not fight, spit or attack people. Think about what you write before you post a blog next time as your words reach a lot of people.
Comment by: Rhiannon
Sun., Jun. 13, 2010 at 1:28 pm EDT
I agree very much,HIV specialist seem to think if they can manage HIV/AIDS then your okay. In my situation I have PRN and major Chronic Pain. I have been told many times over that once my Viral Load and T-cell was in good range then i should be able to manage my pain rather well. this is NOT the case.The damage from HIV meds to my body is worse and keeps getting that way. I stayed locked up in this house what seems for ages because I cannot do what so many others can do.We also have the issue of others abusing pain meds and because of this doctors do not want to prescribe pain medications and when they do it's very little and limited.Having no way of life due to pain etc seems to be okay with HIV doctors as long as my Viral Load and T-cell seem to be okay. what gives.And yes i have seen many many specialist that deal with pain and they state I do have a severe case of PRN, but again does any doctors pay attention ? NO they don't and no specialist wants to dish out pain meds out of fear. So whats the deal, are we really better off on HIV meds.. or should we just slice the wrist and get it over with so the doctors have no threat with there lic prescribing pain meds? HIV is nothing compared to the other issues we have to deal with when it comes to other side effects.I put money on it that any HIV specialist had to deal with what most of us have to deal with , we ALL know they will be worry free from anything. Go figure.
Comment by: houstontroy
Sat., Jun. 12, 2010 at 12:38 pm EDT
Thank you for writing about this subject. Your experience mirrors my experience exactly, with one exception. If I work longer hours or stand on my feet for more than 30 minutes at a time I also shuffle when I walk and my feet hurt so badly when I get out of bed in the morning that I can barely walk. I had a neuropsych test performed and it is determined I have "executive function degeneration like due to long-term HIV infection". Anyway, it's a tough thing to deal with at work as people have noticed and one person privately asked me if I am using drugs, which I am not. I love working and the rewards that come with that but I am depressed that I might have to go on disability soon. In addition to all this I was recently diagnosed with anxiety AND depressive disorder. I never was like that in the past. I believe research is falling behind on this issue. Is this caused by meds or HIV damaging brain cells. I believe it is the latter.
Comment by: Shawn
Sat., Jun. 12, 2010 at 10:50 am EDT
I agree with you on this because I have been positive now for 15 years and I two have problems with concentrating, pain in the heals of my feet and I have bipolar as well as major depressive disorder.I am glad to see that I am really not crazy. I have problems with expressing my thoughts and it is becoming so frustrating for me. My current doctors are not educated enough and I dont have the energy to look for new doctors at the present time. I feel so lost. I hope that these doctors start to take this thing into consideration and get on the ball
Comment by: Andy
Sat., Jun. 12, 2010 at 9:48 am EDT
Thanks for writing this, I have had an "undetectable" level for 13 years, yet at 49 I am suffering from all the problems you have noted. The pain is unbearable and nothing stops it, stopped working in 2004 due to cognitive issues and osteo-necroses of both hips. I'm still here, but,
It is not cured by a long shot!
Comment by: BrokenWingedBird
Fri., Jun. 11, 2010 at 1:19 pm EDT
Thank you, once again, Charles, for having the gumption and the integrity for telling it exactly as it is. I admire you enormously.
Comment by: Terry
Thu., Jun. 10, 2010 at 3:04 pm EDT
Wow! I thought it was just me. No really I believe the Cognitive issue of HIV is hugely underreported and a serious emeriging problem.
Thank you so much for sharing your story.
I don't feel quite as alone in this as before.
Comment by: Mico
Thu., Jun. 10, 2010 at 2:55 pm EDT
Ah, osteoporosis & osteoarthritis, two of the worse things to deal with and such a shock when not even 50. This is on top of HIV plus the numbness in the legs & tingling in the fingers, the sudden numbness of my hand when holding the phone to my ear or walking and feeling my leg go numb as if asleep while I'm moving about!
When working it makes it much more difficult to deal with. All the doctors I had at the time would do is add another medicine. Finally, I fought back and went on disability. It is not easy. These things and now hepb.
Manageable, by whose definition? Taking a massive amount of pills daily to counteract the effects of the hiv meds, is not manageable, doable, yes, manageable, NO!
Manageable to me, means I take my pills, I may notice something not & then doing the day, but it really doesn't bother me at much.
Having the sensation of falling, losing feeling in one of my limbs, needing to keep smiling with those I work with while at work and yet, wanting to scream inside and go lie down somwhere, is not my idea of a manageable disease.
If I live alone & I'm not need to run out to work my job, then I can get by. It becomes more manageable, but is it really?
I have to force myself to do something active so my body does not melt to blubber and no I cannot 'hit the gym' but I do 'manage' a walk most days. It's not depression although I've been there and I'm glad it's gone along with any paramour I may have had.
No, this is not like diabetes (although I do not have diabetes), it is not thyroid disease, where I have to take a daily pill and go about my business, with the occasional medicine adjustment (I do not have thyroid disease).
I think we, those of us who have hiv and/or hepb/hepc would like to think of it as 'manageable' and for some, we are buying into it. I am happy to see those who say, NO IT IS NOT. Are you listening doctors???
Comment by: Lloyd Marks
(Al and NY)
Thu., Jun. 10, 2010 at 2:44 pm EDT
WOW...great article! Thanks.
Comment by: William Sanchez
(New York City)
Thu., Jun. 10, 2010 at 2:24 am EDT
Thank You very much for your article. I to also suffer from cognitive impairments. Yet clinitians
doctors and HIV oragnizations are not fazed by all the aliments that have arisen as a result of HARRT therapy and inflamation claused by HIV. Also lipoatrophy is also causing all sorts of blood disorders (HDL-LDL)levels low levels of testoserone.and low red blood cell count.neuropathy, mico dysplasia, (thinning of the rectal walls) beeding. and last but not least is atrophy cause by many HIV meds (loss of musle tissue.
Comment by: Dave nj
Tue., Jun. 8, 2010 at 9:16 pm EDT
I could not agree more with your statement about the "foolish people who bareback..." I was mortified that another blogger for the body queired as to the reasons for barebacking and at times, I feel pandered to converstations for barebacking. I responded twice to his blogs sharing my feelings about the risks of same. One cannot quarantee mutual monogamy as a protection against the transmission of HIV; the risk is not just worth it. You are so right, HIV is not such as manageable disease. And we should not be fooled by our wishful thinking.
Comment by: Raheem
Tue., Jun. 8, 2010 at 4:17 pm EDT
I am so sorry for everything that has happened to you and likewise I am so incredibly saddened by the fact that I think I may also have HIV. I am undergoing tests so anyone who reads this blog please include me in your prayers.
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