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Bradford's Essay
On HIV: Science, Medical, Pharmaceutical, Government and Media
Bradford's Essay
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Science, Medical, Pharmaceutical, Government and Media
by Bradford McIntyre



Like me, Maureen was not on any medications for HIV when we first started volunteering. When Maureen started the meds she developed severe side effects. Protease Inhibitors had come into use by 1998 and Maureen was on a combination, which included them. She developed some of the bizarre and severe side effects found among patients treated with protease inhibitors. The most common effect takes the form of disfiguring fat deposits, an extended belly caused by the drug Crixivan, with nicknames such as the "buffalo hump" and the "protease paunch". These side effects were reported for the first time at the Fifth Conference on Retroviruses and Opportunistic Infections in 1998, reporting that 60% of HIV patients taking protease inhibitors develop the manifestation.

Maureen could not tolerate the medications and she believed it made no sense to put children, women and men on the same dosages. She believed the reason she wasn't tolerating the medications was because the dosage was too high and with that, too toxic. She was a petite woman of five feet. Like many others, Maureen wasn't sick, but was told by AIDS specialists at St. Paul's Hospital that if she did not continue on the drugs she would die. I saw her just after leaving the hospital, crying because she had been yelled at when she said she wanted to stop taking the treatment. Maureen, like many people living with HIV, is the reason we have advanced in HIV/AIDS treatments. Maureen was so determined to show that the dosages of treatments needed to be regulated differently for children, women and men, that she not only wrote a paper, but presented her findings in Geneva at the AIDS Conference the following year.

Maureen's body was ravaged by the toxicity of the HIV medications. These new antiretrovirals and protease inhibitors can have a negative effect and destroy T cells, B cells, red blood cells, kidney, liver, intestines, muscle tissue and the central nervous system. Quality of life is greatly affected due to the side effects and many diseases are showing up that are caused by the pharmaceuticals because among other things, these drugs can weaken the immune system.

Maureen's death in 2001 was very difficult. Even though I have watched so many people deal with illness and have watched close friends die, Maureen's death touched me in ways I can't really explain. Only to say, she was way too young in her 30's, a gifted and loving person with strong convictions and dedicated to the education of others. Having a close relationship with her family also made her death more difficult. Equally, shortly after Maureen's death, it was announced that Dr. Julio Montaner, Director of Clinical Activities for the B.C. Center for Excellence in HIV/AIDS at St. Pauls Hospital and one of the leading experts overturned the conventional "hit them hard, hit them early" practice in antiretroviral drug therapy, making individualized treatment available. Prior to this announcement, antiretroviral therapy was routinely recommended to anyone infected with HIV. Maureen will be truly missed by all who knew her, but she certainly made a difference in the short time she was with us! Many more people will benefit!!!!

My concern is for individuals who have health problems that are not addressed and who suffer needlessly and possibly die. The AIDS virus is NOT solely responsible for every health issue facing infected individuals. The underlying concern is for those people who may not be having any trouble with the virus in their system as much as having some other factor affecting their health.

Symptoms of illness cannot be overlooked nor can all symptoms be attributed to HIV. Rather than focusing all of the emphasis on attacking the HIV virus, consideration must be given to recognize symptoms of disease. The disguises are many but the faces are those of individuals. In the early 90's, at Howard University Hospital, doctors reported distressing patterns of undiagnosed infections. Findings of 40, HIV+ women who died of AIDS, showed at autopsy, that half of the 40 women had more than one disease unidentified! Seven (7) out of the 40 had several other diseases. The others diseases were recognized only at post mortem. Alarming about this situation was the mis-diagnosis and no diagnosis that took place. Many have died and many have suffered greatly due to mis-diagnosis or no diagnosis.

My own experience with AZT in 1991 was one in which I suffered from all the many side effects of AZT.

After having managed for 6 years without any drugs to combat HIV and a continual bombardment from the medical profession telling me I needed to be on the drugs, I finally agreed and started taking AZT. I had chosen not to take drugs for HIV from the time I was diagnosed until this time, but having lived more years than expected, I thought maybe this was a good time to start some treatments to ensure living even longer.

When I did start AZT, it was with a positive attitude. For the first six months, there were no signs of any problem with my health or side affects. Unfortunately, over the next few months, things changed considerably. There was a progression of symptoms taking place and I started to develop severe side effects caused by AZT. I was suffering from out-of-mind experiences, (years later I would learn many people who were diagnosed with dementia did not have dementia, but were suffering from the toxicity of the AZT), headaches, fatigue, nausea, anemia, insomnia and diarrhea. Along with these, I was suffering with the crippling effects of neuropathy causing a deterioration of the nervous system in my legs and in constant excruciating pain caused by this condition.

Over the months, my health deteriorated and it was apparent something had to be done. I had to find a way to fix what was wrong. Not knowing what or how to do that, I went to see my doctor. Understandably, many people living with HIV/AIDS suffer from anxiety and depression. I was not depressed and if I was anxious, it was only to find out what was wrong. Let's fix it and get on with my life! I related each and every thing I was experiencing to the doctor. I must admit to not having all my wits about me and I may have appeared out of sorts, but I am not a depressed person. Even so, the doctor gave me a prescription for anti-depressants, which I took for several months.

When I stated again my concern regarding the ongoing problems that I originally brought to his attention, he referred me to a psychiatrist. The psychiatrist prescribed an anti-anxiety medication, which I took. I was very upset emotionally due to the bombardment of all these additional drugs and their side effects! My legs were getting worse with more pain as time went on and the other signs that something was wrong still existed! If I had my wits about me and could have analyzed the situation, I would have realized that all the earlier signs, headache, nausea, diarrhea, insomnia, dementia, my legs crippling from neuropathy, discomfort and pain were in fact the side effects of AZT.

It appeared as though my illness was progressing and I might die. I hadn't received any answers from the doctor so I decided to stop taking all the drugs. When I was off all of the drugs and my head cleared and I could think rationally, I happened to find the literature on AZT given to me by my physician. It clearly stated on the paper given me by the doctor, each and every side effect of AZT, all of which I conveyed to the doctor. I changed doctors when the doctor did not recognize that I was suffering from all of the many side effects of AZT, but instead put me on anti-depressants and anti-anxiety meds. Clearly, it was not appropriate for me to continue with a doctor who could not recognize the side effects of the drugs he prescribed! While others were convinced I was dying, had I not decided to stop taking AZT, there is no doubt I would have died. The AZT has caused irreparable damage and its effect on my body has changed the state of my health forever!

Early on, treatment consisted primarily of AZT, every four hours in high dosages. Today, dosages have been reduced considerably and AZT is still used in combination therapy. Also, AZT has been used successfully to prevent the transfer of HIV infection from mother to child. Unfortunately, people died due to HIV illness and the toxicity of AZT. However, many more benefited and many lives were saved. Many people lived until newer more effective drugs became available and are living healthy productive lives today.

I used AZT only for a period of 9 months and after stopping the AZT, I lived 7 years without HIV/AIDS drugs. For a very long time during this drug free period, I had a problem with diarrhea and I tried to get my doctor in Vancouver to validate this condition. I knew my body. I tried everything to address the problem. I was aware that something was going on in my body and I wanted to find out what it was. When I first mentioned to my doctor my interest in being seen by a specialist, he said, "If I send you to a specialist for a scope and they find nothing and a few months down the road you are in discomfort and need to have it done again, the technicians will not want to do it." Ridiculous as that sounded, he wouldn't refer me to a gastroenterologist. Instead, he prescribed medication to help relieve the diarrhea.

Each time I went to the doctor with concern about the diarrhea, he would say the AIDS virus caused the diarrhea and that I should be on the HIV/AIDS drugs or I would progress to disease and die. This wasn&t the first time I heard this! Many who choose not to go on meds have heard this over and over. I didn't want to go on the drugs. I just wanted to clear up the diarrhea.

Several months later, I visited the doctor again. Still experiencing problems with my bowels, I requested a test be done. The doctor looked at me and in a taken aback kind of way, he said, "Hold on, I'm the one who decides what tests to do and whether they are necessary! " Repeatedly on several earlier visits, I described the symptoms I was experiencing. He asked me once again to go through them. Had he not documented them? Obviously, he hadn't validated them! Again, he advised anti-viral therapy, due to his worries and concerns for progression of disease and the likelihood of all my problems being HIV related. He stated that even with tests, there might not be conclusive evidence of what is causing the problem.

I said I wanted to know and that these health issues were not normal. Before I could make a decision to start anti-viral therapy, I felt these health issues needed to be answered. The problems most likely would never be given consideration once on the anti-viral therapy. Unfortunately, very little recognition was given to my health concerns by this doctor, with only HIV/AIDS treatments recommended. So, off I went to find another doctor.

For over twelve years of dealing with HIV infection, I tuned into my body and very often approached physicians with information regarding a health problem. My ability to describe the symptoms, the area affected along with being well read on HIV/AIDS and with my history of HIV, gives me some idea as to what may be the problem. Often, this includes knowledge of tests that may be useful to detect the situation and knowledge of possible treatment required.

My determination and constant pursuit to get to the bottom of an illness led to success. When I did find a new physician, an appointment was made with a specialist in gastroenterology. Later, a scope was done, which showed colitis. For over a year, I tried to get my previous doctor to acknowledge that there was a problem. After six weeks on medication for the colitis, my diarrhea was cleared up.

Having colitis undiagnosed for such an extended period of time, meant I wasn&'t absorbing essential nutrients, vitamins and minerals needed to keep my immune system running properly. I lost weight because of the constant diarrhea and was not able to gain weight regardless of how nutritious my diet was. Going so long before the colitis was diagnosed and treated was the primary cause of my weakened immune system. These circumstances played havoc with my health, which caused my immune system (cd4 count) to be seriously weakened, putting me at risk -- not HIV!

If I had been satisfied to accept that nothing could be done, I would have continued to suffer much longer. There are many different opportunistic infections and diseases and I feel that validation of the concerns of patients regarding their health should be met. Over and over, we are directed to HIV/AIDS drug treatments as a solution, but the problem isn't necessarily one the HIV/AIDS drugs will eradicate.

...positive attitudes are not simply 'moods'

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