Question from a doc

[christo0917]

Hello,  

I had a high risk sexual exposure and then 2 weeks later I had what I consider dead ringer ARS.  The following are the relevant labs.  

3Weeks: My CBC was normal except for a slight eosinophilia. Elisa 1/2 negative. HIV1 RNA PCR negative

4Weeks: HIV1 RNA PCR negative.  Because my contact was African-American(dont know if she was from Western Africa) I got a HIV2 RNA PCR which was also negative.

6weeks: HIV1 PCR negative, Elisa negative.

9 Weeks HIV1 PCR negative, HIV2 RNA PCR negative, Elisa negative. CMV IgG pos, CMV igM neg.  Same with EBV and hhv6. Still with slight eosinophilia. ALT slightly elevated at 52

At about 10 weeks I developed what appears to me to be hairy leukoplakia.  .  I got this lesion biopsied today.  I also have a bDNA test pending.  . I am absolutely  convinced I have HIV based on my signs and symptoms I continuously am trying to figure out why my testing is negative.  I am pursuing this so aggressively because it has such severe implications in regards to my career and to my beginning family.

1.  My Elisa is negative at12 weeks.  I am specifically concerned that this is possibly a non-B clade and am wondering about the ability of modern Elisa's to detect these less common clades.  ie if this is a non B clade,  are the standard Elisa sensitive to them?

2. If this is HIV2 I am concerned that the window period is longer than HIV1.  Do you have any opinion as to wether the window period is longer for HIV2?

3. If my biopsy comes back as OHL is that a clincher that I have HIV in the absence of immunosuppression for other reasons?

4. Is there any testing that would help to detect an infection that hasnt been verified by the usual tests which Ive had.  Specifically Im wondering if bypassing an Elisa and performing a Western Blot would be helpful?  In other words would a western blot identify enough antigen specific antibodies that the Elisa's havent?

Thank you for any help you can give me.

[christo0917]

A related discussion, question about ohl was started.

[christo0917]

Thanks for your help Dr. Hook

[Edward W Hook, MD]

You are asking “what if” questions that have no relevance to your "individual case”.  I will not feed your inappropriate anxieties further.

OHL and dysplasia are overlapping entities. You are incorrect that OHL only occurs in immunosuppressed persons.  Further OHL, a hyperplastic, sometimes dysplastic process is most correctly is a biopsy diagnosis, particularly in someone like you who does not have HIV.

It is also becoming clear that my efforts to assist you and to alleviate your inappropriate concerns are only feeding your problem. Hence this thread will end now. There will be no further answers.

Please take my advice and seek health in dealing with your inappropriate concerns, not wasting your time trying to diagnose something that you do not have.  EWH

[christo0917]

Thanks Dr Hook for the response and your opinion I do respect.

2 topics Id like your opinion on.

1.  If I did have one of the less common strains would a Western Blot help?  In other words are the antigens that the western blot depends on,  similar enough between the less common strains and the B strain?

I realize that worrying about alien strains may not be practical on the large scale but Im just asking about my individual case.

2. Arent dysplasia and OHL different entities?  In everything Ive seen OHL is seen almost exclusively in immunosuppressed patients.  Is my understanding correct that you disagree with this.  This distinction is important because Im going to be left with what to do next if the biopsy comes back OHL.

Thanks again for you input

[Edward W Hook, MD]

I will provide a brief follow-up answer and then this "discussion" needs to end.  You asked for my opinion and I gave it based on nearly 30 years of taking care of persons with and at risk for HIV as well as my own attendance at meetings and reading of the scientific literature.  Worrying about "alien" HIV strains that will not be captured by standard testing is simply not practical or borne out by the science.   When persons have abnormal HIV stains tests (PCR or antibody tests) give at worst, indeterminate results which then lead to further investigation and detection of infection. thus my comments are based on your cumulative lab results.  to base a diagnosis of HIV on anything other than a lab test is simply not justifiable.  

In addition, as I said, dysplasia has many causes and was recognized long, long before HIV had even been recognized. For a fuller discussion of this topic however, I would advise you to discuss this with a dermatologist.

Finally, it is clear that your anxiety is having a profound impact on you and you are having trouble accepting the overwhelming evidence that you did not get HIV from the high risk encounter that you mention.  To that end, my sincere advice, given in the hopes of being helpful to you, is that you should discuss this with a mental health professional, not continue to prove what the laboratory tests conclusively show is not present.   EWH

[christo0917]

Dr. Hook,

Thanks for your response(Jeff too).  I didnt explain in my previous post due to character limit why I am so convinced about HIV.  I had virtually all of the symptoms of ARS.  The only sign/symptom I didnt have was lymphadenopathy.  My myalgias were pretty convincing as it consisted of extreme bilateral deltoid aching. I also had  peripheral neuropathy that is actually still lingering.   Weve done testing for other possible causes of my symptoms as detailed in my original post and nothing has shown up.  Then when the OHL showed up it seemed to be the clincher.  Im a physician and Im sure these signs cannot be simply attributed to anxiety.  

I was hoping you could answer some specific questions.

1) Im concerned about non b clades.  If I was infected by a non B clade would it show up in my PCR tests.  To my knowledge the PCR tests arent as sensitive to the nob B clades,

2) Is your opinion that Im not infected based on my labs entirely?

3) If I was infected by HIV2 or one of the non b clades would the standard Elisa tests be less reliable?  ie Would you expect my Elisa to be positive at 12 weeks.

4) I had my PCR tests after the majority of my symptoms resolved.  Im concerned that my tests missed the acute phase where the VL would be very high.  At 2 weeks post symptoms would the VL still reliably be detectable?  

5) What are some other reasons besides immunosuppresion for OHL assuming my biopsy comes back as such.

Dr. Hook,  I was hoping you could answer these questions and also comment specifically as to why you think its impossible for me to be infected.  Any response would be highly appreciated as Ive had to hire locums to cover my practice as my anxiety levels preclude me practicing medicine.

[Edward W Hook, MD]

Welcome to our Forum.  Our other readers/members are becoming well informed about our responses and indeed jeffhaley is correct.  there is simply no way that you have HIV infection of any sort.  Your symptoms could well have been caused by any number of other causes including the innumerable community acquired, viral flu-like illnesses that most people get with regularity.  Similarly, IF you have oral hairy leukoplakia, it by no means Indicates that you have HIV.  The combination of tests you have PROVE, without a doubt that you do not have HIV of any sort including non clade B HIV viruses.  To do further testing is a waste of your time, money, mental and emotional energy.

I hope this is helpful to you.  You can and should stop worrying.  EWH

[jeffhaley]

I'm just a visitor to the site, but I've read plenty of the doctors' responses(I used to be freaked out that I had HIV as well) and I can tell you that they either one of them will tell that you definitively, positively, without a doubt, 100 % do NOT have HIV. First of all, your negative tests prove you definitely don't have it. And furthermore, the OHL is only a possible sign of HIV in the later stages of infection, like after you've had HIV for years and it's already full blown AIDS. It's never a sign of infection in the early stages of HIV. Besides, even if you do have OHL, Dr. Handsfield has said that he had it once too, so you shouldn't worry about it. In addition to all of this, I have seen Dr. HHH say many times that heterosexual men are virtually never, ever infected with HIV after only one unprotected encounter with a woman. He has said that virtually all HIV infected heterosexual men were exposed many many times over many years before they were actually infected.

I know you'd rather hear this from the doctors, I just thought I'd chime in so you might rest easy tonight. I've read their responses many times to your exact same questions many times and I know exactly what they'll tell you. You're totally fine.