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Got my blood to the CDC (twice)
Oct 8, 2004

I believe that I have a form of AIDS that is going undetected by standard HIV screening. Two years ago, after a heterosexual sexual encounter, I became seriously ill with what looks like the natural disease progression of AIDS. After an acute infection stage and a period of asymptomatic health, I have fallen extremely ill to an unrelenting, progressively-worsening physical demise. Whatever I am currently dealing with, it strongly resembles classic early stage HIV disease. Upon review of my medical files, it would be reasonable to suspect that I will be an HIV-Negative AIDS patient with a bleak future.

As my blood indicates, my body is reacting to its undiagnosed foreign invader with: altered CD4:CD8 ratios; a rapid decline in lymphocyte percentages; a decline in CD3s; inflated LDH, CH50, Cortisol and segmented neutrophils levels; and a low T3 uptake. In accordance, my body is reacting to its immunodeficiency with severe and extensive abnormalities ranging from minor ailments, such as extreme weight loss and debilitating fatigue to far more disturbing lung tumors and opportunistic-like infections.

As worrisome as my health is to me, I am extremely troubled by the strong likelihood that more people are being infected every minute that cases like mine are allowed to go undetected. So, with the immeasurable support of my family and friends, I have decided to wage a loud noisy fight in hopes of sparing more innocent lives. With such, I have written thousands of letters, including, but not limited to: the Massachusetts Public Health Department, Center for Disease Control, World Health Organization, United Nations, National Institute of Health, American Red Cross, local & national politicians and every HIV/AIDS organization I could find.

I have received a tremendous amount of invaluable advice and I correspond regularly with the most senior public health officials in this country. Over the past 9 months, my blood has traveled to CDC-Atlanta (twice) and has tested negative for HIV strains: 1, a, b, c, d, e, o, 2 and generically for reverse transcriptase. I have, however, read about many new HIV strains (a clade n and a highly divergent type 2) as well as a newly discovered infectious agent -- HIAP-II. To add to my inquiry, I have a Non-FDA approved test manufactured by Discreet Pharmaceuticals-Canada (which claims to detect HIV groups 1, 2, & o simultaneously) that repeatedly results in a HIV positive diagnosis. While I have tested negative for each of those strains by FDA-approved standards, I often wonder if the Discreet home test (whose import to the US was recently banned by the Federal Trade Commission for its purported false-positives) is detecting some type of new mutation.

While I am relieved to have garnered attention from medical professionals, scientific researchers, and key governmental agencies, I do not feel that their attention alone is enough to spotlight the potentially explosive issue of HIV-Negative AIDS (a.k.a. idiopathic CD4+ T-lymphocytopenia). It is very apparent to me that we have a very big problem on our hands requiring substantially more research, funding, and media coverage.

Since my story is plastered on bulletin boards across the internet, it is not surprising to me that I have identified many others worldwide who believe they suffer from the same mysterious condition, a new form of AIDS. Unfortunately most are not willing to selflessly report themselves to the public health officials, provided anonymity however, many of them are willing to talk to The Press.

Those of us who have what seems to be a Non-HIV form of AIDS should certainly think twice before donating blood. For the sake of public health, the American Red Cross should be trying to identify the infectious agent that is in our blood. Even though we do not test positive for HIV, I would hate to think that we are unknowingly and unintentionally spreading a new form of AIDS to our sexual partners. Unfortunately, during my asymptomatic dormancy phase, I believe I transferred my undiagnosed disease to yet another host, a heterosexual man who (after an "acute infection" and a "period of asymptomatic health") is now suffering from his own form of a mysterious illness. For all we know, we are in the early days of a Non-HIV AIDS epidemic.

I have come to appreciate that no one can diagnose us overnight. I just want someone to help me get my body into a medical research study. Why is this such an unreasonable request when you live in the wealthiest, most prosperous country in the world? In an effort to further my cause, I have established a fund and started to travel the circuit to raise grant monies to fund my own study. I will knock on every door in the world, if I have to. Tell me, what would you do if you were fighting for your life and potentially the lives of millions of others?

What I need to understand, today, is how new diseases get diagnosed. Who cultures viruses? Who are these scientists? Where are their laboratories? Can you help me find them? How do pharmaceutical companies come to manufacture tests to diagnose diseases? I welcome your thoughts, prayers, advice, and guidance.

Thank you for your time.

P.s. I have a Masters degree. I am a director at my firm. I used to be a triathlete. I have never used IV drugs. I have never traveled abroad. I am neither homosexual nor bisexual. I have been with 10 sexual partners in my 31 year existence (which makes this so easy to figure out). My point is this: My undiagnosed infectious and communicable disease is not rare!

Response from Dr. Conway

You certainly raise a number of important issues and I will add my voice to the many who have already congratulated you for your courage and determination.

In science and medicine, we are always on the lookout for new disease entities. The more we understand them, the more likely we are to figure out a way to treat them. I hope this will be the case for you, sooner rather than later.

There are many illnesses that, on the surface, look like HIV. It is unclear what causes them and if they are transmissable. I would NOT rely on the results of a Canadian home HIV test kit to definitively identify HIV infection. It was pulled from the market for generating false positive results. I would want to confirm that HIV (or antibodies to it) are present by some other means before I drew a conclusion about your case.

As for the blood donation issue, I would not worry. Anyone with an undiagnosed chronic illness such as yours would be automatically excluded from donating (at least in Canada). This is to eliminate the risk of unknowingly transmitting a pathogen, which is exactly your concern.

I will end by wishing you health (and a specific diagnosis) as soon as possible.



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