February 1, 2002

This article tells one person's (my) story of a quest for health in the face of on-going HIV infection. I tell this story in the hope that readers who are free of infection will stay that way through coming to understand that having this lifelong infection -- and that treatment for HIV - is not easy. HIV is not an infection that I believe any rational person would want to acquire - even in the USA where treatment is virtually guaranteed, thanks to federal and state subsidies. I also hope that some others, like me, with HIV infection will write in to the Seattle Gay News with their own stories as a way to help readers stay infection free. There's not a doubt to me that the threat of HIV infection and its reality to the 15-20% of those gay men with infection locally is the biggest health problem currently facing our community.

The Advent of AIDS

As a specialist in, and University of Washington teacher of, internal medicine, I became involved in treating persons with full-blown AIDS in late 1982. Six months earlier I had provided care to a friend who had the first case of persistent generalized lymphadenopathy (PGL or chronically swollen lymph nodes in multiple places) that I had seen; PGL later became known as a common sign of HIV infection. At that point I realized, as a gay man, that some new and very serious problem was out there affecting gay men that was causing the life-threatening "opportunistic diseases" we call AIDS, and I thought to myself that this was probably the result of some sort of infection that I didn't want to get. Little did any of us know what was in store in 1982.

In 1981 I had broken up from an earlier relationship, was dating again, and, despite my best intention to avoid getting AIDS, in early 1983 I came down with a two-week illness that, looking back, was almost certainly my first sign of newly acquired HIV infection, the cause of AIDS. My partner was also ill at the time, and we both had to take a couple of weeks off from work for terrible diarrhea, stomach pains, nausea, vomiting, low-grade fever, headache, muscle aches, and a bunch of other symptoms we attributed at the time to a bad case of intestinal "flu." A year and a half later (just after the test for HIV first became available) I learned that I had developed antibodies to HIV, which meant that I had become infected. By that time I had already provided care to a dozen or so gay men with AIDS, and a number had already died of terrible and very unusual diseases that despite my years of training I had previously never diagnosed or treated. My friends, family and I began the long roller-coaster ride of worry that most people with HIV can never get off of.

Early Treatment for HIV; Preparing for the End

In 1987, hoping to add to the medical knowledge about the effective treatment for HIV, and possibly to benefit personally, I joined the famous ACTU (AIDS Clinical Trials Unit) study 019, that eventually showed the value of the drug AZT, the first anti-retroviral drug approved for the treatment of HIV. For several years, I struggled to take hordes of capsules (three times the dose we now use), every 8 hours, until I was finally kicked out of the study for non-compliance with the difficult regimen. I had the habit of taking skiing vacations each winter during which time I'd stop the medicines, hoping for some semblance of a normal week on the slopes, and for some rest from capsules which caused me nausea and interfered with my life. After too many such breaks, I was no longer considered a good study subject. Around that time we began to understand that T4 (also called CD4) cell tests were a measure of one's immune system reserve and predicted getting the life-threatening opportunistic diseases that lead to death. Since my T4 count was at the time in the mid-700s, nearly normal, I became less concerned about no longer participating in the study, and figured maybe I was a "slow progressor."

In the early '90s, however, my T4 count slipped to below 500, and following the best medical advice at the time (and with my then 8 years experience in caring for people with AIDS I was clearly one of the local HIV/AIDS experts), and consulting with my own doctor, I decided to re-start AZT (then also known as zidovudine or Retrovir) for real, not just as part of a study. But, my T4 counts gradually fell and by 1994 with my counts just above 300, I seemed headed for AIDS. I decided to stop seeing patients, to focus on my own care, and to cut back on long-term career goals.

Shortly afterwards, AIDS experts began to tell people with HIV to take several anti-retroviral drugs simultaneously, so my doctor suggested that I add 3TC (also known as lamivudine or Epivir). However, by the middle of 1996, at the International AIDS meeting in Vancouver, BC, the recommendations changed to triple therapy for HIV infection, including a drug from the new protease inhibitor class of medicines. So, again I upgraded my anti-HIV regimen; but before very long the quantity of HIV in my blood (the "viral load") was high enough that my doctors advised that my earlier experience with AZT had "burned out" that drug's usefulness and that I should switch to a whole new regimen. To shorten a long story, increased viral counts on several occasions resulted in several changes to my treatment regimen and gradually reduced my treatment options, but the details of my experience with drug toxicity are important to relate.

Anti-HIV Drug Toxicity

After one of these viral rebound "failures," in 1998 my doctor recommended a new 4-drug regimen, including the protease inhibitor ritonavir (Norvir), and an older drug, hydroxyurea, which had recently been found to be of potential use in treating HIV especially when it was combined with ddI, the second approved anti-retroviral medicine. This regimen was doubly toxic for me. First, the ritonavir in the full doses recommended at the time was simply intolerable, giving me a strong tingling sensation around my mouth, interfering with my voice and causing stomach pains, cramps, and aggravating an on-going problem I had with diarrhea. After several months, I told my doc I just couldn't continue ritonavir. So, we switched to another protease inhibitor drug, nelfinavir (Viracept) which had fewer side effects, but was initially nearly impossible to swallow. The tablet was very large, and it had edges that seemed to stick in my throat and wasn't much of an improvement in the diarrhea realm.

The other problem with this treatment regimen came on gradually in the summer of 1998 as I noticed that I was becoming short of breath with my usual walking. Then I developed a cough and a fever, prompting a trip to the doctor and a chest X-ray which showed the kind of picture I'd become too familiar with in people with full-blown AIDS and PCP (pneumocystis carinii pneumonia, the most common AIDS-defining illness). That afternoon, I learned from the patient's perspective how sputum specimens were induced, and shortly afterwards underwent bronchoscopy, meanwhile starting on new antibiotics for presumed pneumonia. After two weeks and many more tests, my doctor and I learned that hydroxyurea in rare cases could cause pneumonitis (pneumonia), and still short of breath, and with coughing and fever, I stopped the possibly offending drug. A week later, the fever vanished, my cough and shortness of breath began improving, and the hydroxyurea was blamed for a month-long illness that I'd begun worrying might end my life.

I stayed on the nelfinavir, ddI, and d4T as my anti-HIV regimen throughout the remainder of 1998 and 1999, but in February of 2000 lost my appetite, lost about 20 pounds in weight, and began reading about a condition being seen in people treated for HIV, called lactic acidosis. This condition resulted from a build up of acid products within my cells, and seemed most common in people treated with ddI and d4T, especially when both drugs were used together. Signs included loss of appetite, weight loss, fatigue, and several deaths had resulted. Although my test results for this condition weren't entirely conclusive, I convinced my doctor that I should take a drug holiday, and within a few weeks was on the road to recovering my appetite and weight. After a couple months off the drug regimen, I was feeling great, but my viral load had increased to more than a million, my T4 count was falling, and I needed to again start taking something to stop HIV. Because we weren't sure I'd had lactic acidosis, and I didn't have too many drug combinations left to take, I restarted the same drug regimen, and brought the HIV infection back under control, with nearly undetectable virus levels in my blood and T4 cell counts rising again.

But this time my sense of wellness only lasted about 9 months before problems re-emerged. In the winter of 2001 the first sign something was wrong again was insomnia, a problem I'd only rarely had before. A therapist told me my trouble sleeping probably resulted from too much stress, resulting from a large number of possible factors: My mom had died in June of 2000 (a little more than a year after my dad's death). I'd had a change of employers also in June of 2000, resulting in a big loss of vacation and sick leave. (I'd highly valued a big sick leave reserve, given my HIV infection). The stock market had fallen, seriously jeopardizing my retirement account. I'd had a frightening and nearly fatal episode of gastrointestinal bleeding in 1999 after tearing my esophagus on a pickle. In the fall of 2000 I developed severe stomach pain similar to pancreatitis (sometimes caused by the anti-retroviral drugs ddI and d4T), but this pain turned out to be due to gallstones, requiring removal of my gallbladder. Then, a candidate I thought would not be helpful to HIV/AIDS and gay causes became president. And, despite having spent years of hard work to treat and combat HIV/AIDS in the community, gay men in large numbers had fallen off the wagon of sexual safety with the return of sexually transmitted diseases, especially syphilis and gonorrhea. This, according to my therapist, made me wonder whether all or much of my work in public health had been in vain. No wonder I couldn't sleep!

We tried different anti-depressants, sleeping medicines, and a two-week vacation in Hawaii, but things only got worse, and by last June (2001) my appetite was gone, I'd lost 30 pounds of weight, I was feeling terrible, and was again extremely worried about my health. Then blood tests came back, showing that not only did I now have confirmed lactic acidosis, but I also had a rip-roaring hepatitis. Furthermore, with my T4 count now below 200, I'd developed AIDS. The hepatitis, it turns out, was due to my anti-HIV meds, a condition called "hepatitis steatosis," often seen in association with the lactic acidosis. I had not developed any new infection, like the viruses that so often cause hepatitis. Another drug holiday was in order, but this time I would not be able to return to the "d" drugs, ddI and d4T, and more drugs are now excluded from my potential regimens to treat HIV.

After another month without anti-HIV meds, my viral load was back at a million, and although my T4 count had gone up to above 200 (probably improving with the resolution of my hepatitis), I still had to be on something to combat HIV and so started still another anti-HIV drug cocktail regimen. Now I'm on 4 anti-retroviral drugs again (ritonavir [Norvir] again but in lower and so far tolerable doses, amprenavir [trade name Agenerase] , 3TC [Epivir], and abacavir [Ziagen]). Some of these capsules are so huge as to barely fit within a pill dispenser, and with my other medicines I now take 22 pills or capsules daily, half every 12 hours with food.

HIV is not a Pretty Picture

I have wanted to tell the story of my treatment against HIV because it hasn't been a pretty picture for me, and I so badly want to seriously caution others against letting HIV get hold of them. I've struggled against the infection practically since I learned I carried HIV, because I know first hand how terribly and prematurely it can kill, and I have truly enjoyed life and I'm not ready to leave my friends and work behind.

The problems I've had with the toxicity of these treatments for HIV have not been my only problem from having HIV. I've also worried repeatedly that the end may be near, have found myself dreaming about the funerals of friends lost, and of my own end. I've been on this HIV emotional roller-coaster, where in 1994 because of a falling and very low T4 counts I decided to cease clinical practice and caring for patients (work that I very much loved) and to curtail beginning long-term projects, only to find two years later the promise of a cure through combination therapy with protease inhibitors. But then I found the treatment regimens failing, indicated by increasing viral loads and frequently impossible due to severe, even potentially life-threatening, toxicity.

Finally, there's the problem of adhering to treatment regimens, and reports of increasing viral resistance to the drugs. Back when I was in the 019 study I found it difficult to enjoy my life while having to take capsules every 8 hours. Now, even a regimen of medicines every 12 hours with food is difficult, as sometimes I'd like to retire early, or sleep late, and find myself having to adhere to a schedule that severely limits my options, if I want it to succeed - and I do want it to succeed. (While writing this account of my ordeal with HIV, I acquired a bad cold with fever, cough, fatigue, and generalized aches. Ordinarily a cold is nothing consequential, but I nearly had to stop my anti-retroviral meds because on top of the cold they made the nausea and diarrhea that much worse. Those of us on meds for HIV it seems have very limited ability to cope with any additional insults.)

To be honest, the problems I've had are perhaps only relevant to me. Most people on hydroxyurea won't get pneumonitis; most people on ddI and d4T won't get hepatitis and lactic acidosis. But my partner, also with AIDS, had 5 kidney stones from indinavir (Crixivan [another protease inhibitor]), and has been having severe difficulty from its substitute, nelfinavir, due to the diarrhea it causes, aggravating an underlying cause of diarrhea he has, called cryptosporidiosis. And, most of my other friends (and some are fortunately still living) with HIV are not finding this infection easy to treat. My conclusion is that no one in his or her right mind would want this set of problems.

Yet Gay & Bisexual Men Keep Getting Infected!!

For the past ten years we've estimated that about 400 persons in King County acquire HIV every year, mostly homosexual men; and, since syphilis and gonorrhea came back in large numbers beginning in 1997, we have reason to believe the numbers of new HIV infections may actually be increasing in gay and bi men as they are in San Francisco and several other urban areas these past few years. How can this be - that gay men don't care enough to protect themselves? Or, that gay men who are already infected might take any risks at all that could spread this infection within the community, already so highly infected?

Those are the kinds of questions I'll write about in upcoming articles. We have some idea about the answers to these questions, but those answers are very unsettling and portend serious problems for the gay community into the foreseeable future. In the meantime, for one, I'd very much like to hear from other gay men about these anti-retroviral cocktails. Am I the only one being tormented by this infection and the toxicity of its treatment? I need you to speak up.