[Question #13615] HIV Negative, AIDS symptoms?

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4 days ago
Dr Handsfield,

I know it’s been said many times on here, but I’m genuinely concerned that I have AIDS despite two recent negative HIV tests.

About two months ago, I got very sick. Since then I’ve developed oral thrush, which seems to have made its way into my esophagus (per preliminary notes from my GI team, following a recent endoscopy).

Thrush aside, I’ve lost 30 pounds in just under two months, and during a recent hospital stay, I was diagnosed with “severe protein-calorie malnutrition”, which was accompanied by non-stop diarrhea.

This may seem excessive, but I’ve also been struggling with what seems to be HSV encephalitis—I’ve had HSV-like lesions in my nostrils, which have developed alongside significant cognitive decline, including memory loss, difficulties with coordination, and  related issues like dysphagia.

I’m not sure what to do, doc. I know seronegative HIV is extremely rare, as are rare undetectable strains, but I can’t reach an ID doc, and my internist and ER docs won’t budge given the repeat negative testing.

I wish this were misguided, but I don’t know how it could be.
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H. Hunter Handsfield, MD
4 days ago
Welcome back to the forum. Apologies for the somewhat longer delay than usual in this reply.

Your previous thread three years ago also concerned your doubts about the reliability of negative HIV test results. It simply never happens and you are seriously overreacting.

Symptoms are poor indicators of HIV infection. All symptoms associated with newly acquired HIV (the acute retroviral syndrome or ARS) also occur with many other conditions, and test results ALWAYS overrule symptoms no matter how typical they may seem to be for an HIV infection or ARS. The importance of symptoms is not that they are reliable indicators of HIV infection, but only to suggest testing be done. Your negative test results show you do not have HIV and that other things are causing all the symptoms you have described. "Seronegative" HIV infections never occur at all, using the modern standard tests; that's a concept left over from distant past blood tests no longer in use. Undoubtedly you have had the standard antigen-antibody (AgAb) tests (i.e. "4th generation", "Combo", "Duo") tests; and likely one or more negative HIV RNA PCR tests as well. If so, I agree with your internist and the ER docs in they refusal to "budge" about your HIV status.

If you really have oral thrush (white coated tongue is not the same thing, by the say), with or without esophageal involvement, your severe protein-calories malnutrition is the likely reason for it. Herpetic encephalitis does not persist for days or weeks; it doesn't matter whether or not you have herpes-like oral lesions.

Clearly something serious is going on:  a 30 lb weight loss is a major deal. The main question seems to be the reason(s) for your malnutrition, diarrhea, and other symptoms. If you are not seeing an infectious diseases specialist, that might be a consideration. In the meantime, keep working with your internist. But do your best to believe that you do not have HIV.

I hope these comments are helpful. Let me know if anything isn't clear.

HHH, MD
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3 days ago
Dr Handsfield,

Thank you for your help.

I didn’t mean to confuse things in my first post.

To clarify, my high risk encounter was three years ago, and since then, I’ve tested negative multiple times on HIV 1/2 antibody, antigen 4th gen. tests.

However, despite the countless negative tests, about two months ago I became very sick.

During a recent week long hospital stay, I was diagnosed with thrush, severe malnutrition, Lymphopenia, chronic diarrhea.

Oral thrush aside, I’m most concerned with my last endoscopy. According to those notes, it looks like I have esophageal candida (receiving a confirmatory report tomorrow).

I know it’s an opportunistic infection, and given my other diagnoses, I’m afraid it means I’m severely immunocompromised.

I know I came off as arrogant before, but I’d just like to put this to bed asap with a negative PCR test.

Thanks again, Dr.


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H. Hunter Handsfield, MD
3 days ago
Be clear:  from all you say, I agree you have serious health problems that may include immunodeficiency and that would seem to need further diagnostic evaluation. But whatever the reasons you "became very sick" two months ago, with your negative HIV AgAb tests, it was not from HIV. There are plenty of explanations other than HIV for "thrush, severe malnutrition, lymphopenia, chronic diarrhea" -- whether or not you have esophageal candida. These things do not necessarily imply an opportunistic infection; they could be directly due to a primary immunological problem, perhaps your "protein-calorie" malnutrition.

That said, it does seem surprising your doctor(s) have not requested an HIV RNA PCR test, which normally would be done in situations like yours. Although I am confident it would be negative, you might discuss it again with your internist, along with my suggestion about considering an infectious diseases consultation. If your internist still is not keen on ordering an HIV RNA PCR test, you can arrange it yourself with any of several laboratories (assuming you're in the US or other industrialized country).  You might consider printing out this discussion in order to share it with your doctor(s).

Threads are closed after 4 weeks or after two follow-up comments and replies, whichever comes first. So you have one more opportunity with this thread. I strongly suggest you add nothing more until and unless you have had the PCR test and would like to let me know the result. I will have no other comments or advice until then. Good luck in the meantime.
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3 days ago
Dr Handsfield,

I just received the pathology report, and the results are abnormal:

diagnosis b - abnormal, consistent with reflux esophagitis
diagnosis c - abnormal, suggestive of reflux esophagitis

I know these results are indicative of the presence of candida/hsv in the tissue samples.

Given the persisting HIV negative testing, what might be the next steps?

Should I consult my PCP about RNA testing? Try coordinating with an ID doc? Given the circumstances, I’m trying to get this done ASAP.

Thanks, again.
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H. Hunter Handsfield, MD
3 days ago
You are over interpreting everything you have seen or discussed with your doctors, all in the direction of your obsession with HIV as a possible cause. This includes the pathology reports. Reflux esophagitis is different than candida/thrush and HSV, either of which would be mentioned in the report if they were found. You have neither of them, as your doctor(s) will confirm.

We take no responsibility for medical advice other than related to HIV or STIs. I've already told you a reasonable "next step":  ask your doctor(s) about possible referral to an ID specialist. As for an HIV PCR test, It would be reasonable to ask any of your doctors, or an ID specialist.

I'm sorry you didn't follow my advice to hold off on additional comments until you have an HIV PCR result to report. If that happens, you would be welcome to post a new question. However, I suggest you not do so:  with a negative result, all we would do is confirm (again) that you do not have HIV. But I'll make a deal with you:  If you test positive for HIV by PCR or by any other test in the future, please return to let us know know and we will refund your posting fee.

I hope the comments so far sink in a little bit. You are seriously ill, that is clear -- so continue to work with your doctors until a clear diagnosis is made. It will not be HIV.

Good bye and best wishes.

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