It's me again margaret ... :-(
Sep 3, 2008
You're going to hate me and not respond I am sure. However just coming on here makes me feel better. So hoping you will entertain me I guess you could call it. I'm the seven year worry wart that won't test after getting the indeterminate result back after a blood donation 7 yrs ago. I had the P51 band ONLY come back on WB (following of course a positive elisa) ... but both my NAT and P24 were negative. No unprotected sex for 3 years prior to donation ... except ONE parter ... twice ... no ejaculation either time. The intercourse was with this guy about 5 weeks before testing and also again about a week and 1/2 before. I'm not worried about unprotected sex with anyone else before that since I would imagine 3 years ago if I were infected .. more than ONE band would show? Right? So my only possible contact with that reason would be this one guy, right? Well I immediatly contacted him when I got this test and he said he was negative ... he said he went to the doctor to make sure ... he told me negative and years later has since married and moved on with life. Me on the other hand live this EVERYDAY .. all YES because of my fear of "what if" or "maybe". I know it won't change the fact if I am positive .. i guess i would rather just not know now that i've waited this long. However the thought I have infected someone else kills me. I am engaged and in a relationship and this is the ONLY thing i have kept from him. I was in another long term relationship before him .. and my husband never contracted anything from me .. he gave blood like clockwork. I'm not asking for sympathy .. in fact I'm pissed at myself. I've ruined relationships and am now in the most amazing one I've ever been in and can't get these negative thoughts out of my mind. That's my problem ... i get afraid to "know". That sounds so selfish .. but I think I know that it's irrational to think I have HIV ... so I just dont test ... but I can't get out of my head "why one band"... which is enough for me to be scared to test. I've asked you before and you have given me great answers and I thank you. Just wondering if anything new has ever come about concerning indeterminate testing and that one single POL P51 band?? I was worried about the white on my tongue last time I emailed in May ... it's still there in the very back .. and when I've been "out" or after a day of eating .. so no change. I guess that is just the way my tongue is? I see other peoples and they aren't as pale, more red than mine? I know I'm obsessing .. and it's killing me. I have in the past 7 years been diagnosed iwth an autoimmune disorder that affects my small bowel and wondering if maybe that caused the cross reactivity with the p51 yearse ago?? I'm trying to dig for anything? Any hope? Everytime I "feel better" I get the nerve to ALMOST go test again .. I'm hoping one day I will. I'm afraid I'll end up ready to have children and that is how I'll have to find out. Please help me. I just want to know why p51 would be there to begin with if NOT a test glitch. How could this be the ONLY band show up after such an early exposure ... and last ... does this tonuge stuff sound like thrush or a suppressed immune system which I've read can cause a tongue to have a pale appearance. Dr. Bob .. as promised I do/will donate. One day I'll win the lottery and I'll make a massive donation to you ... hold me to it. Right now I just need any postiive anything that can be thrown at me. Everything else in my life is in order .. and this hangs over my head like a dark cloud. I wish i had never given blood that day and I dont think I would ever have wondered ... my risk was otherwise WAY too low, etc. Thanks Dr. Bob for letting me ramble on a restless night .. you are a great man.
Response from Dr. Frascino
Hate you? No, of course not, but I do feel sorry for you.
I have absolutely nothing more to offer you other than what I've already advised (see below). I urge you to seek the services of a psychologist/psychiatrist to help you confront your irrational fears of being HIV positive. Once you've accomplished this, you will be able to get HIV tested and put this issue permanently to rest. I'm quite confident you will ultimately test HIV negative. Please note when it comes to HIV testing, procrastination is never a good idea, because what you don't know can kill you. In your case, I remain confident HIV is not your problem. Fear of HIV is.
I'll repost my previous responses below. I urge you to copy this post and my replies and show it to your therapist. It will help focus and speed your therapy.
Please help me -- 7 year indeterminate May 20, 2008
Hello You gave me much ease years ago when I emailed you about an indeterminate test with ONLY a p51 band and low risk. I hadn't had unprotected sex in 3 years .. and had minimal contact unprotected sex ONCE a few weeks before I gave blood and got the indeterminate test back. I could never bring myself to re-test. i asked the ONE person I had been iwth and he claims to be "fine" and said he would re-test and was "fine"? he has since married ..i did too. my husband gives blood regularly and never has had an issue. I know that doesnt matter. I never got over that and never re-tested. You assured me that I likely had nothing ot worry about that p51 band would not show up alone like that (my nat and p24 were negative). Well .. about a month ago I had a crown loose and a horrible taste in my mouth which lead me to examine my mouth .. ALOT. I discovered my tongue was a little white colored ... and over the past 3 weeks (looking everyday .. scrubbing .. etc) it has gotton worse. I am now thirsty ALL THE TIME and the back of my tongue feels so rough when i swallow .. my tongue feels so dry i feel like I have to drink ALL THE TIME. There are no "patches" and it doesnt scrape off. It looks a different color if I eat .. and if I brush it ... it fades and comes right back. That indeterminate scare was almost 7 years ago .. would this be a first sign of HIV??? i'm scared from what I've read? I just went through ALOT of stress so i wonder if it' tht? I had also had a vaginal yeast infection a month before that and it went away and came back and they found a slight trace of bacteria .. treated it .. went away and never came back. they said it was likely due to sex (hadn't had sex in a long long time). I dont know if this is thrush and a hiv symptom or something else. I have an autoimmune disorder as it is .. and i know the stomach can cause problems in the mouth .. and alo maybe that loose crown?? Can i please get your opinion. I am happy to donate any amount to you all and your services. Again ... p51 only ... almost 7 years ago. Partners since have been "clear" and possible contact for first time in 3 years says he is negative?? Now I am getting a white tongue .. worse in back .. excess thirst. White is not in patches and doesnt scrape off .. not on the lateral side of my tongue either only very very way back and light coating up to tip almost. can you please give me your opinion? thank you so very very much
Response from Dr. Frascino
How very unfortunate that you once again find yourself here a full two years after your last post and you remain scared and worried about the exact same issue that could and should have been resolved seven years ago!
There is little more I have to offer than the advice I provided two years ago. (See below.) The facts are straightforward. Unprotected sex does place you at some degree of risk for STDs, including HIV. An indeterminate test at a blood donation center is not at all uncommon. These sites are not designed to be HIV-diagnostic sites, but rather to protect the blood supply from any even potential contamination. As such, they not infrequently will pick up some false-positives and a fair number of indeterminate results. With appropriate follow-up testing, we can easily sort out who is and is not HIV positive. Running away from this because you are scared doesn't change the reality of the situation. In fact, often this type of avoidance behavior makes underlying anxiety and stress worse as times goes by. So here you are two years later, a full seven years since all this began and you are freaking out over potential "symptoms" because you never resolved this issue about your indeterminate test!!! As I've said numerous times in this forum, "symptoms" are notoriously unreliable in distinguishing who is and is not HIV infected. Also, trying to determine your status by relying on your partner's having negative tests is equally inaccurate.
Do I think you are HIV positive? I have absolutely no way of knowing, because you refuse to do what is obviously necessary: Get tested. Statistically the odds are all in your favor that you did not contract HIV from your minimal potential exposure. Your testing pattern of "p51 only" on Western Blot is not suggestive of seroconversion, as that protein band would not be expected to appear first. So what should you do? My advice is simple: You need to get psychological help in confronting your unwarranted and irrational fears of being HIV infected. Once you've conquered that problem you should get a rapid HIV test. Results are available in as few as 20 minutes. If negative, you merely yell WOO-HOO and give yourself a swift kick in the butt for being such a foolish ninny all these years. If your results are again indeterminate, you should proceed with a qualitative DNA PCR test. This type of test can help sort out unclear or indeterminate antibody test results, because it does not rely on anti-HIV antibodies but rather detects a piece of the virus itself. You should also review the archives. What you'll find is over the past several years (since you last visited the forum) there have been gazillions of other worried wrecks who received indeterminate results in a variety of settings blood donations, pregnancy screening, etc. Please note the vast, vast, vast majority of these folks turned out to be HIV negative. I'm quite confident you too should be included on the ever expanded list of very happy ex-worried wells who definitively resolved their indeterminate status!
Thanks for your offer to donate to the Robert James Frascino AIDS Foundation (www.concertedeffort.org). In return I'm sending you my very best good-luck/good-health karma that this time you'll follow my advice and put all this unnecessary worry and anxiety behind you by confirming once and for all you are unequivocally and conclusively HIV negative.
p51 only Sep 26, 2006
hi. 5 years ago i gave blood. 30 days after i gave blood i recived a letter from the redcross saying i could never give or attempt to give blood or plasma, etc, again because I had an indeterminate result on my HIV-1 test. THE ELISA was positive, they told me they do it twice, then the Western Blot is done. The ONLY band to come back positive was p51 -- no others. They redcross also does the p24 antigen test and another which are suppose to test for the window period .. they were negative. I hadn't had unprotected sex in 3 years, minus ONE partner in the month before giving blood. I had started dating a guy two months before the day i gave blood. we had unprotected sex one month before i gave blood (no ejaculation) and also about a week 1/2 before (also using the pull out method). I was terrified that indeterminate result was because of this ONE partner .. again it had been 3 years since i had any other partner with no protection, and in those three years only ONE with protection. Can you please help me understand why the p51 came back positive? Could I have been hiv positive and it was an old infection and only that band years later be present ??? OR could this indicate a NEW infection?? Over the years this has emotionally effected me severely. i forget, then after a while the thoughts come back. i never got re-tested, i think that test scared me so much i can't bear the thought of going back. Can you please tell me in what case a P51 band would be the ONLY one present? I had a hemotologist friend say p51 is in the "inner core" and in no way would p51 become present in the beginning or be the ONLY band present in an existing infection, test glitch, period. Should i trust this guy and m ove on? please tell me your opinion. I'm having a "bad month" of remembering. I thought I had moved on .. guess not. I'm married, want to have children one day, but live with caution. my husband (who came along after this testing) gives blood every 3 months and never has had a positive or indeterminate result .... help please.
Response from Dr. Frascino
Five years of worry, all for naught! If you had followed the advice on the letter that the Red Cross had sent you, all of your anxiety over this issue would have been avoided. The blood-screening program is designed to protect the blood supply. In doing so, they set the test sensitivity very high so as not to miss any even potentially HIV-positive blood donors. You had an indeterminate test (positive ELISA + indeterminate WB). This is not considered a positive HIV test! Indeterminate does not equal positive. However, it does mean you should have had follow-up studies to ultimately determine your status, be it positive or negative. In your case, the follow-up studies would almost definitely confirm a negative result. There are many potential reasons for an indeterminate result. You can read about these in detail in the archives, as I've addressed this point many times in the past. A p51 band detects an "anti-polymerase antibody," not an anti-core antibody. Anti-core antibodies are p17, p24 and p 55.
What you need to do now is what you should have done five years ago: get retested and put this issue permanently to rest. Read through the archives so you get a better understanding of indeterminate test results, and then get retested. I'm confident you will be definitively HIV negative. That's the only way to end the "bad months of remembering."
Good luck (although I doubt you'll really need it). Write back with your final test results and we'll WOO-HOO together, OK?
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