i don't know where else to turn
May 15, 2007
dr. bob, i know you hvae so many questions to answer, but i am desperate, as i am sure most of the people on here are. i know you can't diagnose me on here, but please, can you give me a little bit of advice????
you are honestly my only hope...i have been to 9 dr's in the past 9 months. they are all giving me conflicting info, and pointing the finger at HIV as the likely culprit. i have had neg antibody tests at 3,4,5,6 months- oral HIV-1 neg at 8 months, viral load <50ml undetectable at 8 months. i have seen HIV/ID, she confirms that i am showing symptoms of HIV infestion...namely severe oral/throat mucosal disease. it looks awful. she and my ENT say they have NEVER seen it in HIV- people. it is reb, bumpy, spotty, with some purple/blackish patches extending by the wisdon teeth area. it was biopsies as hyperplastic squamous mucosa.
the HIV doc says my symptoms are definitely suggestive of HIV, but i should have testes positive by now. she says she is puzzled. auto-imune has been ruler out. over the last 9 months i have lost 40lbs, low grade levers for months on end, burning feeling all over my face, red rash on face and chest upper back. my glands are confirmed to be swollen for 9 solid months. i had night sweats for a month. i had the most severe viral like illness in nov., 3 months after exposure, all through the chronic pharyngitis(resulting in tonsils and adenoids removed in jan.) started 4 days later, with reb pimple like bums on uvula, which are still there, only worse. to this day i still have this red rash on my boobs and cheeks, ID says it looks like ARS rash, but shouldn't be here 9 months later.i am sick probably 20 out of 30 days a month.
the risk was unrpotedted oral, but i know that my skin in mouth was not intact--right before we did it, i got the spermicide from the condom in my mouth, it burned severlyey. i know it broke the skin. i stupidly continued, because i was drunk. i was fighting with my husband, and choose the worst way to relatiate, by cheating on him. i know think i have definitely ruined our future. the man i was with, was someone who i had known for years, and someont i had been with prior to my husband. to sum it up, this man chased me for years, even after i weas married. we do it one time, and no lie, with in a month...he is gone. he has lived in our small town for life, and he just disappeared, his family won't talk about it to anyone...people are making the assumtion about his HIV status because he has been around with too many women. he recently lost a great deal of wight. i know i shouldn't make assumptions, but i have too, because this is so unlike him. i feel he left for this very reason.
i know you can't get too specfic with me, but please give me some peace. no matter what your opinion on this situation is it would be helpful. do you reccommend this further testing. it has been 10 months now, the HIv doc, from a university hospital is reccommending it. if u say 3 months is definitive and conclusive, ehat about me, someone who has her docs telling her it can still be hiv? what else can i be looking at? i have read about how rare it is to be a late seroconverter, but it has happened, right? with this documented info (oh i forgot thrush too), and the HIV specialists "MAYBE-let's keep testing", what should i do? what else could cause this mucosal disease? according to ENT, nothing.
my general practitioner says she firmly believes in her "HEART" that it can take more than a year to show up. what do i do doctor? my husband has forgiven me for my indescretion, no matter the outcome of these tests, he will stand by me. i wish 10 months ago, i would have mada better choices. he does not deserve this.
the biggest problem is this...if i have it, i can deal with it. i know it is something we will have to live with. i have to take responsibility for my decisions and try to be the best mother i can in the time that i have. my children are everything to me. if i am healthy enough, meaning i am definitely HIV-, there is nothing else we want more than another baby. as soon as possible. i miscarried a year and a half ago, and that is what caused me to fall into a miserable depression, which culminated in my cheating on my husband.if i am DENFINITELY 100% HIV-, i want to get pregnant right away.my gynecologist, the only one who feels i am conclusively neg(but she has never seen or treated these other symptoms, although she knows the situation)feels it is OK to go ahead and ahave a baby, but the gen. prac. says NO way, u are almost surely infected. (also recently anemic, and CBC are slighly off.)
please, i have asked you variations of this question 10 or more times. please, dr. bob, take a moment to answer me, give me some advise. what should i do next. i find myself checking this page and reading the archives for 4 hours each night after my children are asleep. it is very helpful, but i have read different doctore giving conflicting advice.your opinion to me, is more valuable than my dr. because you are living this illness. when i was a child, i lost a cousin to this illness. he succumbed very quickly, and i admire you for having the strength to be here for all of us worried people when you are dealing with this personally. the waiting is the hardest part, i just want to know what to expect, and how to plan my life accordingly. please dr. bob, should i seek different dr's, if so, which kind? everything conflicts. i can't get a no or a yes. she wants me to come in next week for a western blot, despite the negative antibody tests, and another one of those as well. i have to travel almost 2hrs to these dr's and it has put a financial drain on my family.please help, it would be greatly appreciated.
thank you much.
Response from Dr. Frascino
Nine doctors all giving you conflicting information???? Yikes, no wonder you're confused.
If indeed you have had negative HIV antibody tests at three, four, five, six and eight months, I would concur with those physicians who advise you are HIV negative.
Your HIV risk "unrpotedted" oral sex with spermicide irritated oral membranes is minimal.
I cannot diagnose the cause of your symptoms over the Internet. My advice would be for you to see a clinical immunologist, if your physicians feel you are indeed immunodeficient. There are rare cases of idiopathic CD4 lymphocytopenia (ICL) that can cause immunodeficiency unrelated to HIV. A clinical immunologist would evaluate the integrity of your immune system. Alternatively you could continue to see the HIV specialist, assuming he's competent. And you could mention the possibility of ICL to him. It can be evaluated by a blood test. If he wants to repeat an HIV rapid test or ELISA, that would be fine. I would not personally recommend a Western Blot, due to the rate of false positives.
If HIV-1 and HIV-2 have definitively been ruled out and your ENT has no explanation for your hyperplastic mucosa and thrush, I'd recommend a 2nd ENT consultation, hopefully at a university-based medical center.
It's important to note your symptoms are not diagnostic of HIV. A negative test trumps symptoms every time. There are, however, other medical conditions that can cause the various symptoms you are experiencing. Don't perseverate on HIV if there is overwhelming evidence that this is not the cause of your problem. From the limited information provided, I would strongly assume HIV is not the cause of your problems.
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