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Long Saga: what is going on in with my body?
Dec 21, 2002

Dear Dr. Dezube,

I (male, 26) had a poss. exposure on May,12 2002 with a female (20, very promiscous, user of marijuana, lsd, cocain hopefully not Heroin)

experienced ARS-like (night sweats, mild fever, lymphadenopathy, sore/dry throat) and hepatitis-like (fatique, dizziness, depression, confusion, discolored urin, stool, itchy skin etc.) symptoms since two post pot. exposure. My CD4 are 450 my total lymph count dropped from 1500 (august) to 1000 (october). CD4 jumping around between 33 and 45, CD4:CD8 jumping around between 1.4,1.3,1.27,1.6

my worst time was July-September: sometimes i even had troubles walking more than 100 meters! i had to stop and wait until i could go on :-O

It got much better, but now in December, 7 months later, i STILL have got: - lymphadenopathy (several swolen lymphnodes, diagnosed by doc + ultrasound, size 0.5-1.5centimeter, some are visible) - white tounge/dry month - occasional (night) sweats and mild fatique - ALT around 100, docs say my antidepressants could be the reason

* I tested negative for HIV by

-HIV1/2 antibody tests out to 28 weeks -4 HIV-1 PCR RNA (between weeks 8 and 24) -1 HIV-1 PCR DNA (week 24) -1 HIV-2 PCR RNA (week 24) -1 HIV-2 PCR DNA (week 24) -other tests (viral culture/PERT, ultrasens. p24)

* tested negative for viral hepatitis: - Hep C by 5 HCV RNA tests (4 roche and 1 bayer) between week 12 and 22 - I am vaccinated for HAV,HBV. i tested for HAV, HBV by several PCR DNA and Antigen/antibody tests, negative (except the vacc. antibody titers for hav,hbv)

* tested negative for - mono - syphilis/Lues - EBV - toxoplasmosis

* I did NOT test for chlamydia, CMV

I have seen an oncologist who scheduled me for a CT scan. However my new ID doc (head of dept.) canceled that test(!) He said its not necessary/overkill/dangerous because next step would be spleen biopsy etc. etc. (basically, he says i might get into a testing machinery that would do no good but harm to me)

However my first appointment with him was only 1 month ago, so he has not seen me during my very bad days in summer (but he got my medical record)

He reckons that i have a (unknown) viral infection and that i should be patient. He told me to do some jogging etc. but he rejected my suggestions/requests for computertomography and lymph node biopsy. (He did an ultrasound and took pics of my lymphnodes but he says "no" to any kind of biopsy or futher testing, other than my liver values)

Sure, I tend to believe that i have a viral infection and not cancer a) because of the timing of the onset of symptoms b) because my health has got better since october/november (at least in my subjective perception)

On the other hand i have read that stress MAY trigger latent cancers.

So I desperately need your advise!! My questions are:

- what would you do if i would walk into your office (maybe with pale face and white tounge) and tell you my story and show you the elevated lymph nodes: would you recommend a CT scan for lymphoma? - would you recommend a Lymph node biopsy? what disease would you look for by biopsy? - do you think there are viruses that can mimic hiv/hep symptoms but are not hiv/hep? - would you recommed further testing for HIV? - do you have an idea what may be the cause for my health problems (except stress)?

i know that i have a good doc, but i really need the opinion of another good doc, since i dont want to risk my life with his "wait-and-see" approach. I have read your messages on this board and i am very impressed by your kind AND truthful/frank answers & advises.

thank you so much for your work,

best regards joe Xxxxxxxxx

Response from Dr. Dezube

Dear Joe: That's quite some saga. I'm not sure what's going on and you have sure had alot of negative tests. Your liver tests are 2 and 1/2 times normal. That gives some clue. I would not necessarily blame your liver tests on your anti-depressants. Since you do have external lymph nodes, it would indeed be good to find out if you have internal lymph nodes inside. I think a CT scan of your chest, abdomen and pelvis may be helpful. Given your perturbed liver studies, it may indeed pay to see a liver expert who can address that situation. Either through a liver specialist or a CT scan, hopefully you'll get some more answers. Occasionally we do have the play the "watch and wait" game to see how things develop.


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