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Do I play the watch and wait game?
Jan 31, 2003

First off I would like to say a huge THANK YOU for helping so many of us out though rough times.

I was interested to hear of two people who are posted on your question & answer board that had similar to identical symptoms and test results to me. They are located under: "Long Saga: what is going on with my body?" & "Another long saga story :=(" I'm sure you remember beacuse they were long... very long. I too had the same symptoms and have been through the same regimen of testing for HEP, HIV, STDs ect. I've just now started discussing the possibilty of cancer with my Doc. My question is this:

In both the answers you don't state whether we have ruled out HIV despite testing negative outside the window period with Elisa and PCR DNA. You state the following: "Occasionally we do have to play the "watch and wait" game to see how things develop." All three of us are very concerned with both Cancer and HIV - I wanted to know if you felt like we can move away from the HIV testing?

I realize your answer might spawn a ton of people with minor symptoms to just freak out. People PLEASE realize we were hospitalized with raised liver enzymes- drenching DRENCHING night sweats, liver pains, cola urine, completely disoriented, spotted tongue, itchy skin, no appetite, spotted tongue, severe energy loss where getting up was a task, deep cough, all lasting from 3 weeks to 1 month and for me shingles during the second week as well. We did I realize this is a complex question and a lengthy one at that but I would truly like your opinion on whether I could move away from HIV testing.

here are the links to the other questions I refer to:

http://www.thebody.com/Forums/AIDS/Cancer/Current/Q143576.html http://www.thebody.com/Forums/AIDS/Cancer/Current/Q144025.html

God bless you! You are awesome sir!!

by the way we are all males between the ages of 26 to 28 - kind of weird

Response from Dr. Dezube

I do indeed remember both of the long long sagas. Most providers, myself including, have seen patients who are clearly ill, yet all testing is negative. We often ascribe this to a viral syndrome. Many of these patients do indeed get better. Many do not. Sometimes we take the "watch and wait" approach and only after some time do we come up with a diagnosis. I've had patients go almost a year until it became clear that they had Hodgkin's disease, systemic lupus, to name just two diseases which are often diagnosed late. I tend to believe negative HIV tests. Occasional I do repeat the HIV testing. I am soooooo trying to get patients to believe that a negative HIV test is just that. Many patients, including many of my own, can simply not accept the fact that they are HIV negative. They are convinced that the test is wrong or that they have some bizarre strain of HIV. All doctors have their own approach with such patients. I personally do blood work as you describe and often a chest/abdomen/pelvic CT which gives a good idea if anything is happening internally. If all the blood work is truly NORMAL (this includes HIV) and the CT scans are normal, then often we have no choice but to "watch and wait". Please note that I am not trying to minimize your symptoms or the symptoms of other patients by this strategy.


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