Dr. Bob, I tried to follow your advice, but there is something wrong
Apr 14, 2004
I tried to follow your advice and forget my paranoia, but I guess I just about made it when I had to repeat tests for the Insurance company:
Below I have pasted a copy of our last post exchange. but I summarize:
Day 1 (during a routine check up for an insurance company) ELISA POSITIVE (Lab A) DAY 2 Repeated ELISA POSITIVE (WB asked) (Lab A) DAY 3 Elisa Negative (Lab B) DAY 5 WB Results come back, Indeterminate, one band P-41 (Lab A) Week 5 ELISA Negative and p-24 Negative (Lab C) Week 9 ELISA Negative (Lab C) ****at this point I wrote you and you adviced me not to retest since I could not possible have HIV***** You convienced me, since I have had no risk relations for the past 5 years and my actual girlfriend tested with me at week 5 from first test and was also negative, but for the insurance I needed a test after 3 and 5 months. Week 15 Elisa Negative (very good news, I thought) Week 22 (two days ago) ELISA POSITIVE !!!! The analist told me he repeated the test twice as it was a very weak positive, but that he could not consider it negative. He has recommended a p-24 antigen and a WB, which results I'll have next week.
What does this mean ? How is this possible ?
My paranoia, which I intentionally did not explain you in my last post (as it really sounds crazy) is that they intentionally infected me in the Lab A. I know, it's crazy, but I find no other explanation: When the gave me the results of my first positive Elisa, they called me an told me I was Hiv positive, and did not request any other test. Of course I got very worried and surprised, and talked to a couple of friends doctors and told me that that was imposible, that a follow up WB was needed to confirm the Elisa, and that they had not follow the protocole.I called the Lab very angry (as a could not believe the results since I know I have not had any risk or even any relationship that would not be with my girlfriend (which is HIV negative)) They agreed that they had acted incorrectly and asked me to come back for a new analisis and WB, and added that if these were to be negative, somebody from the Lab would have to make some serious apologies to me and pay the consecuences (whatever that meant). I went there and they took more blood for the WB. My paranoia and crazy thoughs (seeing the results and symptoms I have had since) is that they intentionally infected me when I went the second time (blood inside the needdle or who knows what) to avoid problems or me taking them to trial or anything like that (far from my intentions as my only thoughs were to leave this nightmare behind). And that would explain why I continuosly tested Negative in all tests performed til week 22 after first positive and indeterminate WB. My logic tells me that if my first ELISA and Indeterminate WB were real, following Elisas would have been more and more positive, since they told me one band was already there. I assume if one bands is there, is not normal to take 5 months for other bands to appear or to be detected by the other Elisas I took. I know, it sounds really really crazy, but from my little knowledge, I find no other reason...or maybe one more:
Could it be possible that I have another kind of retrovirus inside that is causing sometimes indeterminates WB or False positive Elisas ?
What should I do ?
What do you think ?
I know on your last post you told me to forget about HIV as I could not possible have it. I agree, but I believe non of us expected this a positive result on week 22, after first test and subsequent 4 Negative Elisas.
thanks again for your help, and sorry for this long post wich is going to take you more that a coffe or orange juice (at you or favourite bar afte the gym) to read.
Un saludo, David
****************************************** Gallo, Montaigner, gp41+diff test results Posted: Feb 28, 2004
Dr. Bob I have gone through many posts in this forum, but I'm still confused. Also, from all the ones I read, you and casually Dr. Steve (Im spanish) were my favourites from the begining, and honestly, I did not learn about your relation until two days ago. Funny that while I read both yours and his posts I felt as if you were the same person. Each with a peculiar different touch, but same ammount of kindness and humour behind it. Anyway, happy to know you two are together and teaming up against VIH. Here it comes: 13 weeks ago during a routine check up my Elisa came up positive. The same Lab ordered a WB. As I could not wait for the results, 2 days later I went to a different Lab (Lab B) and the Elisa came up negative this calmed me down a little. Next day I got the results of the WB and those were indeterminate with presence of one band (gp41). I can not remenber if it was Gallo or Montaigner who said that gp41 can sometimes be mistaken by celular actin (whatever that is) but on the other hand I also read that gp41 is the most representative protein...! but again that is was hard to find it by itself on a WB as the first one to become positive was p24, SO, as I guess normal in these cases, I had little sleep since and spent much time reading about Elisas and Western Blot results and about 80 of the posts in thebody.com. but nothing I read could really explain an Elisa + a WB ind. and a Elisa (unless lab errors or cross reactions), so after 5 weeks I went to take a thir test and this time with my girlfriend also, to a different lab (Lab C)..woooo-hooooo! Both Elisas came back negative (I also had an antigen p-24 test done that came back negative). I have been together with my girlfriend for 5 years and no other sex relation in between, so that should rule out the possible window period that could explain these results, so I wanted to think that my 2 last Negative Elisas plus my p24 were conclusive (together with my girlsfriend's results) but I could not take away the first positive Elisa followed by the indeterminate WB and the presence of this gp41 band, but I decides I was going crazzy and to continue life. The problem is that about 5 weeks after the first test I started to feel funny behind my ears, no lymph nodes were visible but when I pressed the area I felt a "tingling" sensation. I also started to feel some aches in my armpit and ears that came and went. Again I could not see swollen lymph nodes, but it felt them not right behind me ear and neck (just as I had read). So no wooo-hoooo any more, I started to get nervous again and went for another Elisa 9 weeks after my first Elisa Positive. It comes back negativeso one more..wooooo-hoooo! But it does not last long since for the last 3 weeks I have been having a kind of more than usual continuous red face. I also feel it more hot than it used to be. Is this Rash ? Temperature has been all the time between 36,5 and 37 and one night went up to 37,3 celsius. I have also had, neck aches an a mild sore throat for 2-3 days I know, you probably think that since I had no risk behaviour why do I worry. An indeternimate WB followed by two negative Elisas with no risk behaviour should not be an issue to worry, but the kind of ars feelings and a personal paranoia keeps me worried. (not to make it even longer, I will explain the paranoia, hopefully, for the x-files, or ex-WW next time I write you, and we will all laught at it) Dr Bob, here are my questions: (1) Is a kind of red face Rash ? if not, how does it manifests ? (2) Do ARS symptoms come all together or could they come like mine, 1 new symtom every 2 weeks (3) How reliable is an p-24 antigen at 5 weeks ? (4) And a Elisa at 9 weeks(I know best is at 12 weeks)? (5) Due to the symtoms I have had should I test further and go for the 13-week Elisa ? (6) I will leave number six for you, so if you have any further comments or advices these will be more than wellcome Thanks very much for your time. Congratulations for your great job. And.admiration for your strenght and view of life. Un saludo, David, (Spain)
RESPONSE: Hello David, Steve and I may be soulmates, but we are not exactly the "same person." In case you need to tell us apart, he's the tall, blond, blue-eyed Norwegian. I'm the shorter, darker, hazel-eyed Italian. As for our "peculiar" touch, well . . .. maybe we should move on to your questions now: 1. No, red face is not consistent with ARS rash. 2. You don't have ARS, so this is a moot point. 3. P24 antigen tests should not be used to diagnose HIV disease. Your ELISA's are negative. That's all you need to confirm your negative status. You can read all about P-24 antigen in the archives, if you wish. 4. Tests prior to 12 weeks are not considered definitive. 5. No, your symptoms are not suggestive of HIV-ARS. You state you've had no risk exposures, you know your girlfriend is HIV-negative, and you've had two negative ELISA's already. Further testing is not warranted. 6. You are correct: Anti-P-24 is usually the first band to turn up on Western Blot testing. P-41 is the most important band; however, a Western Blot is not considered positive unless you have P-41 plus other specific bands. What you had was a false-positive ELISA, confirmed by two subsequent negative ELISA's. Your Western Blot never even made it to a "false positive" status. It was "falsely indeterminate," as proven by your subsequent negative ELISA's and P-24 antigen tests. Your symptoms are not related to HIV, because you do not have HIV. Your tests, taken in total, indicate you are definitively and unquestionably HIV-negative. If you have trouble accepting this fact, you should seek counseling. I'll even add a #7: 7. I totally agree with you: Your "personal paranoia keeps you worried." That's the problem you need to address. Stop chasing a disease you could not possibly have. HIV is not your problem! Feel better. Good luck. Dr. Bob
Response from Dr. Frascino
I'm at the coffee shop. My opinion about your situation hasn't changed, despite your "very weak positive" week 22 ELISA. HIV is not your problem. No, I absolutely do not believe you could have been "intentionally infected" by someone in Lab A. There are a variety of reasons why your ELISA might be weakly and falsely positive and your WB, indeterminate. To describe these possibilities in detail is beyond the scope of this forum (and would require me to order at least three more cappuccinos). Since your insurance company may now be as confused as you are about your test results, perhaps the best thing to do is make an appointment with an immunologist or HIV specialist. That physician will review all your test results, order any other confirmatory tests necessary, and write a definitive letter to your insurance company that explains the entire situation and your HIV negative status. Your situation is frustrating, but not at all worrisome. Once this is all settled, if you continue to have difficulty accepting your HIV-negative status, do consider some counseling, OK?
Feel better. Stay well.
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