[Question #8083] Late Stage HIV
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48 months ago
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2010 confirmed exposure via recovered IV drug users- non consensual and one that I was with. Became severely sick. Have had health issues since. Tested neg in 2013. Took 4 more rapids between 13-16’. Have dealt with hyper immune state, Dx hypergammaglobulanemia, high eosophinals, frequent infections (tonsillitis, tonsillar abscess, skin infections, staph, severe lower lobe double lung pneumonia, continually told had an unknown autoimmune disease and weak immune system. Recently very sick & biopsy dx w/ lichen rash that first appeared in 13’, biopsy confirmed pityosporum folliculitis, night sweats, MAJOR hair loss (3/4 of hair in 2 months), Dx w/ trichomegaly & blepharitis, neuropathy, unexplained muscle loss, unintended weight loss, scalp fungus/yeast, repeated despite treatment oral thrush, diarrhea for 2+ months straight, receding and bleeding gums, nail clubbing & thickening, low lymphocytes, and low (And lowering) CD4. Show negative on 4th gen, but am immune suppressed and very sick, housebound, unable to work, & wasting. Tested as having a high CCL4(MiP-1Beta) which suppresses HIV. Also before all of this was born with overactive immune responses with severe asthma and allergies- since getting very sick 4 months ago- have had no allergic or asthma reactions- like immune system is not being stimulated. Is it possible to test negative in late stage/long standing infection when severely sick or to never produce antibodies at all? Can you also test too late after an exposure where antibodies would drop to low levels? Is there. Way to test for broadly neutralizing antibodies which would suppress the antibodies that tests are looking for? I’m looking for help in some way as I continually get sicker and local doctors are unsure of what’s going on.
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Edward W. Hook M.D.
48 months ago
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Welcome to our forum. I’m sorry to hear of your challenging health issues. You are questions to me relate to whether there is any possibility this might be the result of HIV infection that has been missed for years despite multiple tests. The answer to that question is no. While persons in the very far advanced, latest stages of HIV may have diminished anybody responses, the virus is still present and would be detected by the antigen detection portion of fourth generation tests.
The symptoms that you describe certainly are compatible with the systemic illness which you have suffered from over a number of years. In some instances diagnosis of such problems can be quite challenging. You do not describe, nor do you need to describe, what sort of healthcare you have pursued related to sorting out these problems and their causes. My advice however would be to seek the evaluation of a trained internist, who can then perform tests, put the pieces together, and embark on further testing to help you. In general, many of these complex, chronic illnesses require repeated evaluations and testing which is best performed by the same physician so that they are aware of the trajectory and time course of the problems.
I’m sorry I don’t have a better answer for you as to the causes of your difficulties. I wish you the best. EWH
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48 months ago
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Thank you for your response. Is there a possibility that the antigen could also be suppressed to lower levels, or hidden outside the circulating blood such as in the thyroid, brain, thymus, lymph, etc that also wouldn’t be detectable in the blood on a test in a really rare instance? I do have the CCL4 gene which apparently is a suppressor. I also am unsure what would be causing the CD4 (It’s under 400 and I’m only 30) to lower And if that would be leaving me susceptible to infections? Also is there a possibility for HIV to mutate and be undetected by standard testing if exposed to multiple strains? I have many markers and indicators of a long standing HIV infection especially with all the recently diagnosed And persisting despite multiple rounds of treatment infections, oral thrush, skin infections, nail clubbing, eyelash growth, hair loss, fungal infections, and other blood markers that with the work up I’ve gotten, I’m kind of stuck at a dead end. Is there a way to schedule an appointment with you?
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Edward W. Hook M.D.
48 months ago
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Several point, in no particular order:
CCL4 does suppress HIV in infected persons but it does not make it undetectable, nor does it prevent antibody formation. The research on CCL4 in HIV was done in persons known to be HIV infected based on positive tests. It would not negate the accuracy of your HIV tests.
Your CD4 count is relatively low but this is a non-specific finding. Many other infections and inflammatory processes can low the CD4 count. Indeed there are even persons who may be borne with an inherited CD4 count. Similar to my point above related to CCL4, that your CD count is somewhat ( but not disastrously) low in no way means that you have HIV or effects the accuracy of your tests.
Once again, I urge you to work with an internist, perhaps with a clinical immunologist, to sort out what is going on.
EWH
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48 months ago
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Thank you again for the fast response.
Local work ups are unsure, as I’ve definitely pursued those specialists.
Is it possible that the antigen/virus could be hidden outside the circulating blood in a reserve such as in the thyroid, brain/spinal fluid, thymus, lymph, etc that wouldn’t be detectable in circulating blood on a test in a rare instance?
Is there a way to get an HIV Broadly neutralizing antibody test, viral reserve, or highly sensitive viral load test done?
It would mean a lot to me to somehow have an appointment with you if possible.
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Edward W. Hook M.D.
48 months ago
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As you know, we provide up to three responses to each client’s questions. This is the third response and therefore it will be the final comment made by me as part of this thread. The thread will be closed later today.
There are no scientific data or reported instances in which evidence of HIV has been found outside of the blood stream in untreated, HIV-infected persons. When persons are infected with HIV, evidence of infection is uniformly present in the blood.
Tests for HIV neutralizing antibodies are highly sophisticated research tools which are used only and research laboratories. I’m not aware that they are available outside of research settings. Low levels of HIV can be detected using commercially available quantitative PCR testing of the sort used to monitor response to HIV therapy. These tests detect as few as 20 virus particles in each drop of blood.
I am not able to provide appointments for Forum clients.
This concludes this thread. I urge you to except the fact that you do not have HIV infection and to seek other causes for the multiple problems you are experiencing. As mentioned above, the best way to do this is to establish ongoing care with a trusted internal medicine specialist, rheumatologist, or clinical immunologist who can follow you over time and provide a detailed evaluation. EWH
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