is this unusual-part 3
Aug 16, 2008
just an update. i visited an hiv specialist today to discuss my situation. he was rather dismissive but i insisted on further testing. to summarize i have 4 elisa test out to 10 months but have on going body shape changes. he finally consented to elisa and RNA testing along with testosterone and thyroid. my question is why does it seem so difficult to move the needle with doctors at times. i know what the facts of my previous testing indicates but if i am indeed infected then i am simply trying to be proactive and protect what immune system i may have left. i would rather be thought of as a fool for asking for more tests than to wait and possibly find out when it is too late. donation to your ongoing efforts has been made. i will let you know the results in about 10 days of what i hope is my last test.
Response from Dr. Frascino
Thanks for the update. I think it's unfortunate that the HIV specialist was "rather dismissive." That should never happen. Although I certainly don't condone his dismissive attitude, I understand why he would try to dissuade you from taking additional HIV tests. As I have repeatedly advised, I, too, absolutely believe HIV is not your problem. You have overwhelming and irrefutable evidence that you are not infected with HIV. That does not mean you do not have a medical problem. It just means that HIV is not the cause of that problem. Imagine if everyone who had a headache insisted it was a brain tumor and demanded CAT scans, MRIs and brain biopsies! Certainly a brain tumor can cause a headache, but a good doctor should be able to distinguish a routine headache from a terminal brain tumor without much difficulty and certainly without ordering numerous CAT scans! Consequently, the HIV specialist's dismissive behavior was probably due to the fact he "knows" you don't have HIV and that additional HIV tests are excessive and unwarranted. (They are also a waste of money, blood and resources.) I have absolutely no doubt your ELISA will once again be negative and that your RNA PCR will be undetectable. The other tests testosterone level and thyroid function tests are appropriate to evaluate the symptoms you describe.
I don't think most competent physicians are "difficult to move the needle with." Physicians really are dedicated to helping patients. Sometimes that help involves educating the patient that his assumptions are incorrect and his fears, unwarranted. This, I believe, applies to you. You remained fixed on an illness that you could not possibly have. You report, "I know what the facts of my previous testing indicate . . . ." If that were really true, you'd know there is no way in hell that you are HIV infected and that additional testing is not warranted. You then state, ". . . but if I am indeed infected . . . ." This is irrational if indeed you knew and understood the "facts of your previous tests!"
I'll reprint your previous posts below. My assessment and advice remain unchanged.
is this unusual Feb 29, 2008
tested negative at 42 days 95 days and 8 1/2 months, all elisa. my exposure was unprotected vaginal and oral sex. developed loose stool 14 days after last exposure which continues now 9 1/2 months. just completed my second sculptra treatment, continued loss of lean muscle mass in legs, and arms. i did a cd4 count at the end of January which was 2 weeks after my last test which read 588 39%. i am 53 years old, ran the marathon last year, lifted weights 3 to 4 times a week so i was familiar with how my body use to look. i limit my running to 5 or 6 miles, actually lift heavier weights with no results. i realize this is not the type of question you generally answer or when you have the responses are generally to move on and seek help. i pose the question anyway as i continue to seek an answer for the drastic change in my life in less than 10 months.
Response from Dr. Frascino
Repeatedly negative HIV tests out to 8.5 months would be considered conclusive and definitive, unless there were rare extenuating circumstances, which I would tend to doubt. (An example would be that your partner was from Mauritania where HIV-2 is endemic and your HIV tests only covered HIV-1.)
There are many causes for loose stools other than HIV! Certainly if you've had irregular bowel patterns for 9.5 months, that could account for weight loss and lack of response to your weight lifting, etc.
1. Have your general medical doctor evaluate your persistent loose-stool problem.
2. If you are concerned that there may indeed by "extenuating circumstances" for your negative HIV tests, consult an HIV specialist. A detailed history, physical examination and, if needed, additional laboratory studies will clear up any uncertainties. Write back and let me know what the ultimate diagnosis turns out to be. I remain confident it is not HIV.
follow up to is this unusual Jun 15, 2008
3 1/2 months ago i emailed and asked that after 4 elisa tests out to 8 1/2 months if i could consider my tests conclusive given that i have had 2 sculptra sessions and had loss of lean muscle mass in legs. you felt that my tests would be conclusive unless there were extenuating circumstances like hiv-2. i checked and my tests covered hiv-1 and 2. i took another test @ 10 months which was negative. during this test i had a fever, sore throat, night sweats. i tried to accept the 10 month test as conclusive but as it stands now i will have wasted away if i don't find out what is causing fat loss from my face and muscle loss from my legs and veins appearing on my arms.Would you still consider my test conclusive or should i test again. if this is indeed hiv i would prefer treatment to try and maintain what body i have left. i owe you a donate to your foundation which is forthcoming.
Response from Dr. Frascino
Yes, I would consider your repeatedly negative HIV-1 and HIV-2 tests out to 10 months definitive and conclusive. As I indicated before, I do not believe HIV is your problem. I certainly would not recommend antiretroviral therapy without concrete evidence of HIV infection! There are many other medical conditions that can be associated with fever, sweats and wasting. Continuing to perseverate on an illness that you don't have, based on irrefutable and overwhelming evidence, is counterproductive in terms of getting to the real cause of symptoms. I would start with a complete medical exam with a competent internist. If he cannot identify the cause of your symptoms, he should be able to refer you to the appropriate specialist (based on the results of your laboratory tests and physical examination), who will be able to evaluate, diagnose and manage your problem. In other words, don't get hung up on HIV. You could (and likely do) have an entirely differently underlying medical problem. Unfortunately, I cannot diagnose what that problem is over the Internet. However, proper evaluation should be able to elucidate the correct diagnosis.
Thanks for your donation to the Robert James Frascino AIDS Foundation (www.concertedeffort.org). It's warmly appreciated.
Good luck. Write back and let us know what the more extensive evaluation reveals, OK?
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