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What would you do if you were me?
Nov 11, 2002

If I didn't no better I would think I have been a victim of a conspirency. I cannot get anyone to take my infection seriously. I have been seen at the Birmingham Clinic (SAAG) I have been seen at Emory ( someone that went to UNC with you (Fox) I have called and written local and national groups without success. And of course I have written you. I have had no answers... Everyone says I have a viral syndrome but its not HIV... Someone has to draw a line in the sand and reconize that you have 2 groups of people here. 1. the ones that you call the worried well, that actually are not sick. 2. the ones like myself that are ill... The second group of people after extensive testing are negitive on HIV put have a unknown viral syndrome. Why doesn't someone investigate this. Since 2 weeks after a risk exposure, I have been sick since July 28th. It is now Nov. 6th. I have had: Xerostomia, Dirreah, Sore Throat, Sweats, swollen glands, joint pain and a daily cold. Had over 3000 in blood tests. The only abnormal was a high sed rate... I have been tracking my Cd4 count. They have been as follows: (sept. 3rd- 807, 54 ) (sept 30th- 658, 51) (oct 15th -767, 54) Everyone says no viral load , no HIV. but nobody has an answer for what it is... In talking with other doctors , what is the consensus and is anyone investigating what is going on. The initial letters on this problem were written back on Sept. 19th, and people with this are not taken seriously by anyone... What is your advice, Thanks David for your help.

Response from Dr. Wohl

I can't tell what is going on. You have symptoms but it sounds like form your emails that all objective measures of your health are normal. For instance your T-cell counts are totally normal. In addition, some very good physicians have seen you apparently without any result that you find satisfactory.

I know you are frustrated. But, maybe you are going about this in exactly the wrong way. Instead of going to doctors who specialize in the one disease we know you do NOT have (HIV) maybe you need to try and see someone who has a broader perspective. For example, your sed rate being up (how up?) may lead me to suggest a rheumatologist to evaluate for a connective tissue disease. If you do not have one, you absolutely need a really good general internist who can provide advice on the best way to work up your symptoms.

As you mention, many people write to this forum with symptoms they think sound like HIV but who have negative test results. Of these, 9 out of 10, like you, report no laboratory abnormalities. The good news is these people are not HIV infected and likely they have a whole mess of different problems that could explain their symptoms rather than a mysterious malady that everyone is trying to cover up for some reason that escapes my imagination.

The ones with objective findings such as a low T-cell count (I am talking a count of 136, not 631) may have something unexplained going on. In your case, you are right, no HIV antibodies, no HIV viral load - no HIV infection. That is just the way it is. HIV is not a rare disease. We know a lot about it. Millions have been infected and a pattern of infection has consistently emerged. Fortunately, you are not infected with this virus. Could you have a different virus, a rheumatic disease, chronic fatigue, a environmental illness? You might. All but the last two categories of disease should provide some signs, the other two require some sleuthing.

There is a study at the National Institutes of Health (NIH) looking at persons without HIV who have unexplained T cell counts below 300. For those interested check out

http://www.clinicaltrials.gov/ct/gui/show/NCT00001319?order=8

You can also contact them at: Patient Recruitment and Public Liaison Office Building 61 10 Cloister Court Bethesda, Maryland 20892-4754 Toll Free: 1-800-411-1222 TTY: 301-594-9774 (local),1-866-411-1010 (toll free) Fax: 301-480-9793

Electronic Mail:prpl@mail.cc.nih.gov

DW



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