In each issue of the newsletter, we will bring you a column that presents the experiences of our members. Their stories are presented In Their Own Words by way of letters they have sent us. We are most appreciative of their willingness to share their very personal stories. It is our hope that through the sharing of these experiences, we will all learn something about each other and about ourselves. It is our hope that the stories will help us all realize that we are not alone. You may submit your stories by sending them either by e-mail or through the postal service to Sandy Siegel.

The following message was posted to the Transverse Myelitis Internet Club on Monday, June 14, 1999. Will was the first person to contact the Association who developed TM with HIV as an underlying condition. Through Will's willingness to share his story, we are hoping that we are better able to reach out to people who have HIV and Transverse Myelitis.

Dear People:

For the last year or so I have been a voyeur to your site. From what I see, there aren't any other people that fall into my particular niche. I am a gay African-American man in his forties living with HIV disease in San Francisco. Last year I came down with Transverse Myelitis, a disease I hadn't heard about until its onset. I wanted to write something about my experience because there may be more people out there like me and maybe they will not find it as difficult or as isolating having these two diseases. I suspect that there are at least a few people with TM and HIV. That said, here is my story.

I remember the exact moment I felt the effects of Transverse Myelitis. It happened a week before last Labor Day. I was on my way from my office on Monday afternoon. The day before I did the laundry and ate something during the day. That night, after returning from the laundromat, I took a rest on my couch and woke up in the evening, went to the bathroom and vomited. I noticed that everything I had eaten that day including breakfast went out of me. It was like I hadn't digested anything during the day.

The next day, Monday, I had an appointment with my therapist at one o'clock. As I left my job, I remember feeling a small pain in my lower back. I was carrying my briefcase and thought that it had caused a muscle spasm. By the time I got to my car across the parking lot, a pain was emanating down the front of my left leg, then my right leg. By the time I got across town, I could hardly stand the pain. I kept my appointment and told my therapist about the pain I was having. He said it sounded like a touch of sciatica. When I left an hour later, I could barely walk because of the pain. For the rest of that week, my condition worsened daily. I made an appointment with my doctor to see her after the holiday, but by the weekend I couldn't walk. I was on some painkillers and thought it would all go away if I could just rest a little. There were other problems as well. I hadn't had a bowel movement or urinated for about three days. I didn't have a fever or anything, body aches, but I sure felt bad. Finally, that Thursday or Friday, I called my doctor and she said I should go to the emergency room immediately.

I waited for my partner to get home from work. I am a gay person and have been in a stable relationship for much of the past eighteen years now. I could barely walk down the stairs from my house. When we got to the hospital, I was placed on a gurney. I remember the intern said that it seemed like I had an extreme case of back pain and that I was probably going to need an immediate operation on my spine. My partner dismissed his diagnosis as guesswork. In any case, the first thing they did was to put a catheter in my penis and drain my bladder. That caused me a great deal of relief. After waiting about a half an hour, they took me in for a MRI. They scanned every thing from the top of my head to halfway down my spine. Just when I thought I was finished, they took me in again. They had found something on my spine about half way down. They didn't know exactly what it was, but when I told them I was HIV positive, they immediately started talking about CMV or PML. Now, I'm not only a person living with HIV, but I am also a long-term survivor. I was diagnosed as HIV positive in 1987 and have gone through years of problems with HIV. Unfortunately, it has been my experience that medical people tend to over estimate the effects of HIV and do a lot of guessing when they find out you are HIV positive, even here in San Francisco. Anyway, when the doctor wanted to immediately put me on anti-CMV drugs, I asked her what the "B" answer was. I told her and the other docs that until they came up with a more definitive diagnosis based on the results of some kind of tests, I didn't want to take a battery of drugs that may do me more harm than good.

So they ordered a spinal tap. That was the first one I had. First, they had problems finding a gap in my spine. They tried several times before the needle would go in. When it did, I felt the most excruciating pain I have felt in my life for about two minutes. I could feel the nerve from the middle of my back to the top of my big toe on my right leg. It felt like a toothache only in my leg. The results of this ordeal were that they found only slightly elevated proteins in my cerebral spinal fluid.

I spent the next three days in the hospital. The first day I was just about paralyzed from my waist down. The second day, I could actually stand up, which amazed just about everybody, me included. By the third day I could walk, although with some effort. The forth day, the day after Labor Day, they sent me home. I talked with my doctor who had returned from Holiday. I asked her what her diagnosis was, and she told me she believed that I had a case of Transverse Myelitis. I had never heard of TM before that day. I asked her if it was an HIV OI (Opportunistic Infection, like PCP, CMV, PML or KS). She said no, that the HIV could have contributed to it, but that it is just one of those diseases that can happen to people in their forties. I had just turned 45 in June.

Over the past year, I have slowly recuperated. At first I had to be particularly careful of incontinence. For two weeks I had to catheterize myself. Then I had to get pills to stop me from urinating five times a night. Unfortunately, I had a couple of bouts of incontinence at inconvenient times and places. My legs hurt all the time. The bottoms of my feet felt numb, then like they were on fire. The back of my legs and my buttocks were both numb most of the time. This took months to get over.

Sexually, I was completely impotent and even though that has faded with time, sex just isn't what it used to be. In the beginning I couldn't feel anything in the top of my penis. Even though that has faded, sex still is not as gratifying as it used to be. One of the most difficult things for me with TM is how to deal with it and HIV. I found your board while surfing for information. As I read through some of the letters, I didn't see any from people like myself, people with TM and HIV. One of my complications is that people with HIV disease must take a regiment of drugs, many of which are experimental. At the time I was on the first version of what we call the cocktail, 3TC, d4T and Crixivan, a protease inhibitor. Now my doctor wants to switch to another cocktail including Combivir, Sustiva, DDI and Norvil. Since Sustiva crosses the Blood Brain Barrier and is known to have psychiatric side effects, I'm wondering how it will react with TM?

So that's my story. I wish all of you well even though I don't know you. I will try to update you from time to time and would appreciate any other person with HIV disease or African-Americans to get in touch with me.

Will provided some additional information for the newsletter that we thought might be important to include with his story posted to the TMIC.

My name is Will Carter and I live here in San Francisco. I'm what they call a long term-survivor with HIV, having tested positive in 1987. Since then only a few days have passed here and there when I haven't taken powerful HIV drugs at least once a day. Many of these drugs were experimental and still are. We really don't have any ideas of the side-effect profiles of long-term use of HIV drugs.

Although I am the first to contact your organization with TM and HIV, I cannot believe I am the only person with this type of dual-diagnosis. Indeed, I think there may be quite a few people with HIV and TM, and it may be that TM is misdiagnosed in people living with HIV. I say this because it has been my experience with friends of mine with HIV that doctors often become stymied with the plethora of maladies that can strike PWA's. Only a few, like KS, PCP or CMV are recognizable. But, over the years, I have seen different neurological manifestations of HIV in friends where the doctors have been left scratching their heads.

When I got TM I was very fortunate in that I was diagnosed and treated in a world-class hospital by capable medical professionals. Still, when they found out I was HIV-Positive, they wanted to treat me presumptively for CMV. I refused, as was my right. I wanted some kind of empirical evidence before I started taking gancyclovir for something I may or may not have. It was only after the MRI that they saw evidence of TM, a disease I hadn't heard of until then.

I don't know if there is a direct connection between HIV and TM. Both are viral diseases and both can affect the nervous system. There may be an autoimmune dysfunction associated with each, but whether there is a causal relationship remains to be seen.

One interesting thing occurred recently. My doctor switched my HIV drugs from Crixivan, d4t and 3tc to Combivir, DDI, Saquinivir, Norvir and Sustiva. These drugs are from three different classes of HIV medications; Nucleoside Analogues, Protease Inihibitors and Non-Nucleoside Reverse Transcriptase Inhibitors (NNRTI's). For much of the past year, I have had sensations in my legs and feet ranging from burning and numbness to coldness, and sometimes I have had difficulty walking. Anyway, these symptoms subsided while I was on the five-drug combination. Unfortunately, I wasn't able to continue the regimen past two weeks due to the side effects of one of the drugs, Sustiva, which crosses the blood-brain barrier in sufficient amounts to disrupt HIV activity. As I said, during those days, I was almost symptom free of TM. I will be going back to combination therapy in the next week or so, having given my body a rest. I will be switching from Sustiva to another NNRTI, delavradine. I mention this because there may also be a connection between anti-HIV drugs and TM. It certainly was noticeable by me.