scared, confused and helpless cant find answers in the archive pertaining to my situation please answer if you can I will donate that I promise!
Nov 17, 2009
Dear Dr. Bob,
I first would like to thank you for all your hard work and dedication you do for people across the globe. You truly are a lifesaver to alot of people and thats why I am turning to you for help.I had unprotected sex with a man of unknown statuts in march of this year from which I met online. I had a urinary tract infection at the time we had sex and other issues and was very intoxicated or wouldn't of had sex with him to begin with. Two weeks later I developed symptoms of extreme dry mouth, headache rash on chest area and face lymph nodes swelled in neck underarms under chin and under my left ear. those lymph nodes looked liked two m&ms stuck in there. I had a fever for a few days and night sweats in the chest area soaking my shirt. I had hive like blisters appear itch burst and then go away and crust over and I have had reoccurent cold sores. In may I developed cobweb looking eye floaters and still had the dry dry mouth. including a very heavily coated white tongue. The physcician I first went to diagnosed me with leukocytosis and leukoplakia and refered me to an id doc. My lymphocyte and neutrophil count were very high at this time this was around mid april. They tested me for hiv via the elisa which came back negative at 6 weeks post exposure. Well according to them I was ok and just suffered ptsd. I developed a new relationship with someone else. We continued to have sex which most of the time was unprotected and this partner no way no how has hiv or any other std. By July I was so ill I started questioning things again and went back to another id doc for second opion she ran another anitbody test which was negative. I developed headaches so severe and light sensitivity can't even be out in the damn sunshine even looking at the computer makes me dizzy and ill and eyefloaters so bad I can't stand it. I get muscle spasms and dirareah that is vicious.. then the pain started and it was in my right side really bad, my back under my arm pit area by my breast area on the sides and on the sides of my knees.. My back area was both upper and lower and I couldn't even sit down sometimes because even my butt hurt. I was refered to an optomologist and neurologist they both ran tests and the opto said he couldnt see anything wrong with my eyes and the neurologist said the mri came back a little strange indicating I may have had a form of menigitis and would suggest a spinal tap if I develop a fever. They refered me back again to id doc this is now going into end of august early sept id doc runs different panels and sees cmv and ebv come back on the high end. The doctor tells me not to worry about it because its igg and not igm for both and that means past infection and not to worry about hpv either because they were all latent infections. So she runs a quantitive pcr test for hiv a on me and all the hep antibody panels well the hep b came back as patient has no immunity..with a star next to it meaning out of range.. and the pcr came back undect but it had a star next to viral load meaning out of range I asked my friend who works at a lab what that meant and she said on the pcr test it will come back out of range if it is over or under its detectable level and that its typically used during acute infection or for drug resistance. She said the hep b thing doesn't sound good and either it was out of range and needs to be retested or I never was vaccinated for it. she is a very close friend that I can confide in however I don't know the truth in that so I am not going to freak on that yet. so again the id doc says go to a oral doctor and a rheumatologist. So I go to an oral pathologist and rheumatologist to rule out autoimmune disorders they test me for lupus sgjoren etc.. including diabetes and ran an immuglobin test. My iga is completely gone almost my igg and igm are on the low normal side he said. He said it is not cvid or something like that and refered me to an immunologist and back to the oral pathologist. The oral pathologist even biopsy my lip to test for sgjoren to make sure they didn't miss anything it comes back negative. The oral pathologist also took pics of my tongue and cheeks which have leukoplakia on them and documented my severe dry mouth and tongue. The id docs out here are not very good and the doc I went to literally didn't even care to hear what the pathologist suggested. He believes its infectious condition as well and has been doing oral pathology since 1971. He refered me to the mayo clinic but even though he refered me it may take several months to get in there they said. This is were I stand right now. So here is my question to you I have never had any past health probs other than a previous hpv infection which will be with me the rest of my life and mono and strepp when I was a kid. I never even had a primary doctor because I never got sick. Is it possible that with the cmv and the ebv and the hpv coming back so high and all igg antibodies that it is either delaying hiv antibodies or not producing enough to be detected? I have had 4 elisa test done out to November. I also have read about dual infection or reinfection etc.. and these docs act like it can't happen.. well it does rare or not it happens.. and also different subtypes you know america is a very diverse country hello we have people from all over the world here so I don't buy the crap of that subtype is found only here etc etc and this is rare blah blah blah..and its only typical in this nationality that is bs! My pathologist also brought up the term diffuese infilitravie lymphocytosis or something regarding my symptoms. He gave all that info to the mayo clinic... Also the hep b thing considering I have pain all the time in my right side area??? All I know is I have the neurologist and oral pathologist backing me up and they have seen it all and they both agree some kind of infection is doing this. The id docs need to quit assuming everyone suffers from ptsd and anxiety and guilt that is bullshit! like one of the extremely educated nurses told me if hiv was so easy to detect and to handle we wouldn't have a pandemic on our hands would we... and she said they wouldn't offer so many different types of tests either. She should of been the doctor because these doctors suck the big one... I understand that you and thousands of other specialists get bombarded with anxiety depression guilt etc... well any educated person should be able to determine the difference between anxiety and guilt pstd etc... ecspecially when other specialist are backing them up and blood work is showing there is a signifigant problem.I am just beyond frustrated at this point and just want my damn life back either way so if I have hiv its my own fault Ive come to the conclusion that I can't turn back time and I have to deal with it... I am very afraid don't get me wrong but I have lost everything due to this ordeal and I have had enough! I don't know where to turn or what to do. Every day gets more miserable I am so damn tired and this dry mouth and headache etc its just enough! Is there a certain test I should be requesting or is there some kind of advice you can give me as to what I should do or some kind of reassurance it is not hiv and to move on to a different type of doc.. I have an appt fri with immunologist am I wasting my time again?? Please help me I truly am at a loss here and truly didn't want to bother you I see alot of repetitive questions on here but I havent found one like mine yet. You seem very educated wish you lived out here. We are in a state that has a ton of hiv cases yet the id doctors out here suck... that explains why in the archives I have seen people asking for helping finding a "good doctor" in this state I live in there just aren't any. I will donate to your foundation whether you reply or not just because I would love to see a cure for this disease in my lifetime and I know it takes alot of money, time ,and research to do it. And donating to you because you take your free time to answer all these questions is well worth it to me you have a way of making people listen and giving reassurance and I would love to see you get your life back too you truly deserve it... Thanks either way doctor Bob just hope you answer if not have a happy holiday season...
Response from Dr. Frascino
Your multiple negative HIV-antibody tests out to eight months plus your undetectable quantitative HIV PCR RNA are conclusive and definitive. HIV is not your problem. No way. No how. No additional HIV tests are warranted.
Unfortunately, I can't diagnose the cause of your symptoms over the Internet and I'm certainly not denying that your symptoms are real. What I can advise with absolutely certainty is that your symptoms are not caused by HIV. I would strongly advise you stop chasing a disease, which, based on overwhelming and irrefutable evidence, you don't have!
You mention that your "IgA is completely gone." You could have selective IgA deficiency. I agree your next step is to see a clinical immunologist. Thanks for your donation to The Robert James Frascino AIDS Foundation (www.concertedeffort.org).
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