[Question #8137] HIV- late stage infection
48 months ago
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Hi-
I asked a question awhile ago about testing too late for HIV. I’m having all symptoms of a late infection and have been housebound sick for 4.5 months- dx repeat oral thrush, pityosporum folliculitis, dermatitis rash, major hair loss, scalp pustules & itching, sudden muscle and weight loss of more than 10% my body weight, night sweats, neuropathy, nail changes, and extreme weakness. I had a lymphocyte panel ran and my cd4 is at 295, CD3 at 572, CD19 at 77, and total lymph at 811. What could cause this drop in CD4 and other B & T cells? I’ve seen tons of specialists and no one knows what to think. I’m desperate for help.
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H. Hunter Handsfield, MD
48 months ago
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Welcome back. But unfortunately I don't think I can help very much. I reviewed your recent discussion with Dr. Hook and agree with all he said. I will reiterate one of his main points: there is no such thing as being "too late" for HIV diagnosis. Nobody with HIV develops negative tests for it. That simply does not happen.
I sympathize with your situation and fully appreciate you are "desperate for help", and I am truly sorry for it. But the HIV tests are among the most accurate diagnostic tests ever developed, for any medical condition, and the results overrule all other considerations: you do not have HIV. The symptoms of HIV infection are nonspecific -- which in medical/epidemiologic context means they do not point strongly to any particular condition, but are shared by many. In other words, you cannot reliably conclude you have HIV just because your symptoms are similar to those in various lists of typical symptoms in HIV infected persons. I could easily come up with 10-20 conditions other than HIV with identical symptoms. But I will say your symptoms are NOT typical for a "late" HIV infection.
Our advice on this forum is limited to HIV and other STDs. Like Dr. Hook, I am confident HIV is not the problem -- but beyond that we do not get into speculation about other causes. All I can do is suggest you continue working with your doctor(s). If she, he or they do not include an infectious diseases specialist, I encourage you to seek such a consultation.
I'm sorry I cannot do more, but I hope these comments are a little bit helpful. Best wishes to you.
HHH, MD
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48 months ago
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Thank you for your reply.
Is there something else that causes a marked decrease in B & T cells? Doctors just say it’s usually HIV or AIDs that does and shrug/ are at a loss when looking at the numbers.
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H. Hunter Handsfield, MD
48 months ago
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This is outside my area of expertise. In today's world, I agree that HIV is the most common cause. Usually B and T cell counts are not done except in people with positive HIV tests. But other conditions can do so, including infectious mononucleosis and cytomegalovirus infection, as and perhaps various autoimmune problems. As I said, you need to be in the care of an ID specialist, and perhaps also an immunologist (which usually means a rheumatologist, i.e. arthritis specialist). Good luck.---
47 months ago
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Someone in HIV virology explained this in my asking if it were possible to be positive and test negative and I’m wondering the possibility on this for my situation? (My CD4 is still in the 200’s and I’m very sick)
“HIV tests can result in false negatives if they do not test for the correct subtype: for instance, subtype B is most common in Europe and that is usually what they test for when doing a PCR test. However the primers for B do not work with types A,C, or D. Subtype C is more prevalent in Asia, especially Thailand, so it could be something picked up when abroad, and that’s why the doctors are struggling to diagnose it. that doesn’t explain how the p24 test is negative, though. If it is actually HIV, there are a few things to know (these are currently being researched and I have done research on this directly): people infected with HIV fall into two general categories progressers (PR) and “elite” controllers (CO). PR act like typical HIV infected cases, their body cannot fight off the virus and they progress to AIDS. CO however can vary and their body is able to fight off the virus (keeping its viral count low) and are usually able to delay the progression to AIDS, without Treatment. Nevertheless, CO will still progress to AIDS without treatment. I have never heard of a CO being able to completely control the virus below the detection limit (50U/mL), but I can confirm from personal experience with samples, that if the viral count is two low, false negatives can be extremely common. Normally anything lower that 1000 U/mL can be tough to detect (speaking from my own experience). CO usually possess a mutation in their HLA that makes it difficult for HIV to enter the cell. This gives the immune system more time to clear the virus without having to deal with rampant viral production. Unfortunately this also puts a good deal of selective pressure on the virus. Envelope genes (and the protein) efrom CO are significantly (statistically speaking) different from those belonging to PR. Hypothetically speaking, if you were HIV+ and you are also belonging to this rare CO subgroup, it is possible that you are controlling the virus to make detection difficult, while slowly progressing towards AIDS. This would also explain why the PCR and p24 tests are negative, since the PCR Primers likely wouldn’t work well with a controller, and the viral load could be too low for the p24 test to detect the virus presence. This is assuming a lot, but as I have done research on this specifically, I can say that it is not impossible. If you were started on antiretrovirals and your lymphocyte counts normalized, this would confirm the hypothesis, but if I’m right, standard tests could be difficult to get an accurate result until the virus completely overwhelms your immune system.
Regarding your question about persisters and reservoirs in a long-standing infection, yes it is possible, although the reservoir has not been identified yet and could be the places you mentioned, or immune/lymphoid-rich paces like the illeum (ie: germinal Centers or Crypts of Lieberkühn). This is likely why CO eventually progress to AIDS, as even they are not able to effectively clear the reservoir.
The cell counts are obviously concerningly low, which is likely why you seem to get sick from everything and you seem to suffer from so many symptoms.”
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H. Hunter Handsfield, MD
47 months ago
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You're in touch with someone who is much more expert in these issues than I am (or Dr. Hook). I'm not going to get into either challenging or agreeing with your other source. I'll just say that my understanding of HIV-infected elite controllers is that all or nearly all have normal diagnostic tests for HIV, except that RNA and antigen tests may remain negative because of low viral load in the blood; but the standard antibody tests remain positive. Also, elite controllers generally have no symptoms and in most cases normal immune function and lab tests, such as CD4 counts. However, this may also reflect differing definitions of "elite control". Your other consultant obviously has experience with some exceptions, but I continue to believe this is extremely rare and I remain confident you do not have HIV. However, I do agree -- and always did -- that you have some sort of rather serious immune dysfunction of a type that is similar to that caused by HIV. You may even have a well defined but rare condition that has a specific name and well studied management.
My closing advice is to recommend that you include an infectious diseases specialist in your care, ideally one with extensive in-depth experience with HIV. If you are in the US or Western Europe, there are at least 20 institutions that have experts with similar knowledge levels as the consultant you cite above -- i.e. in most major metropolitan areas. If you are not yet in the care of such a facility, I suggest you ask your primary care provider(s) for such a referral; or if for some reason you prefer to do it yourself, contact the division of infectious diseases, perhaps preferably at an academic medical center. (Depending on your and your consultant's location, perhaps s/he would be available to formally consult on your case.)
That will have to conclude this thread. I hope the discussion has been somewhat helpful. But I'm very confident that we're not going to be able to help any further. That said, if in fact HIV turns out to be the problem -- which, as I have said, I strongly doubt -- please post a new question to inform us of that fact. In that event, we will credit your posting fee. One way or the other, I would sure like to know if in fact HIV is the problem.
Best wishes to you.
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