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you just answered my question
May 16, 2007

thank you so much for answering the following question. i neglected to mention the ID did check my t-cells and they were in the 700 range, that's normal, right? that would rule out that ICL? i do feel a lot better than i did months ago, but cannot forget the awful illness i experienced.

also the ID/HIV spec., Rheumatologist and the ENT are from the University of Pittsburgh Medical System. and in their system i found no climical immunologist, just their rheumatologist/immunologist, who said it was not auto-immune. i did see 2 ENT's, and the first one flat out said that does not happen with HIV-. the 2nd, who biopsied it said he never should have said this without proof. the dr'd just keep sending me home. i have financially broke our family because of these medical costs. out of the dr's available to me...i don't know where to go, they don't seem to interested. and i am really confused with you saying you agree with the negative tests mean neg. but them saying keep seeing the Hiv spec. at first she told me i don't need to come back with neg antibody and viral load at 8 months, no chance...right after she tells me symptoms are consistant.

i really respect your opinion as i said, more than theirs, because you are living it. i just wanted to clarify those few points.

sorry for the spelling errors, i am so jittery over this.

i don't know where else to turn May 15, 2007

original question: 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

Hello,

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.

Good luck.

Dr. Bob

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Response from Dr. Frascino

Hello,

I'm beginning to get a clearer picture of your situation.

Yes, your CD4 count is indeed normal and that does rule out ICL. From your most recent post it appears that most of your physicians are not suggesting you are immunodeficient. In fact they "don't seem interested" and just send you home. And the HIV specialist told you that you don't need to come back. In addition you report you "feel a lot better than (you) did months ago but cannot forget the awful illness (you) experienced."

With this additional input, here is what I believe:

1. You are definitively and conclusively HIV negative. HIV is not your problem. No way. No how.

2. Although your extensive evaluations to date have not yielded a diagnosis for your previous symptoms, there is no current evidence that you are immunodeficient.

3. The first ENT physician was obviously mistaken and his comments apparently frightened you (understandably).

4. You are "a lot better," but continue to worry.

Your major problem right now may well be psychological. You report that your being "jittery over this" and the uncertainty about your initial diagnosis coupled with the mixed messages you received from some of your physicians resulted in significant anxiety. At this point I'd recommend counseling to help you accept the fact you are HIV negative.

Good luck.

Dr. Bob

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

Hello,

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.

Good luck.

Dr. Bob



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