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Got my blood to CDC
Mar 29, 2004

Here is the history of the situation (in a nutshell):

- It all started with vaginal & oral yeast. - I have 3 home tests which all test positive. I don't care if they're not FDA-approved or not they are picking up on something, because all my antibody tests keep testing negative - Drenching night sweats (3xper wk), so bad I have had to blow dry my hair @ 4am. - Excruciating chronic retro-orbital headache (8months). My head ct came back abnormal ("abnormal muscosal thickening"). - I get oral lesions & splotchy rashes sporadically. - I am short of breathe. I have a chronic feeling of being in a state of heart attack. (I used to run triathlons back in April 2003). I had a chest ct today. - I have dropped 30lbs for no reason in the past 10 months. - I am dizzy; my ears ring; my eyes hurt; I see spots floating all over the place; - I have passed out for no reason; - My legs twitch, not sure if it's muscular or nerve-related (and my toes lock up); - My joints are like an inferno some nights, just burning internally. - I am totally lethargic and am at a point of pure exhaustion. Beyond tired, true utter sickness. - My EBV test is positive.

I will die of an AIDS-related complication.

Response from Dr. Lee

It is understandable that you are frightened and weary of your illness, particularly because you do not have a diagnosis. Your apparent single-minded focus on HIV seems unreasonable in light of reportedly negative testing. It may be more productive to look at other causes for your symptoms rather than continueing to insist that your illness be attributable to HIV.

Scientists (doctors, etc.) do not have all the answers. There are clearly undiscovered diseases, as well as diseases which have not been fully characterized, or delineated. There are many illnessses which have no treatments.

Chronic fatigue syndrome is one of the illnesses for which we have not fully delineated the cause or best treatments. I urge you to continue to work with your doctors to determine the causes of your poor health. Hopefully you will be able to find an illness with a clear and treatable cause.

Be well.


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