[Question #10043] Persistent Symptoms

26 months ago

Hi, Dr. My date of potential exposure (heterosexual, somewhat protected) was in May 2022. I started PEP at the 40 hour mark and completed it. However, many symptoms that started around the 1 week mark have persisted with only a slight break of a few months. I have had a lot of tests which I know you frown upon, but every time symptoms return. I have had 9 4th Gen and 2 RNA qualitative, most of these within the first six months. The most recent were around the 8.5 month mark I had a negative 4th gen and at the 13 month mark a negative OraQuick. However, my symptoms are getting worse, mainly pen point sized flesh colored bumps that constantly develop on the sides of my fingers, intermittent slight headache on the left side only, a faint red spotted rash on palms that lasted about a week, and now symptoms of arthritis, including a swollen index finger, joint pain in fingers and feet, and intermittent cough. I believe I'm too young for arthritis and it was one of the first symptoms that started a week after exposure. In the past I had additional symptoms such as mouth sores on tongue and the bottom of my mouth and red spots on hands/arms that looked like infected pores along with joint/muscle pain. The only symptoms I haven't had are fever, sore throat and flu. The tests haven't given me any closure with these weird persistent symptoms. I found some (albeit rare) examples where people who started treatment shortly after exposure did not respond to tests for 48 months, and the literature even says that when symptoms are present a more sensitive PCR test should be administered. If this is a PEP failure I'm wondering what to do. I've tried working with a doctor who dismissed the bumps on my fingers as plantars warts and basically told me to go away. Should I get another RNA test since its been 6 months? And should I go about trying to get a more sensitive quantitative version? Thank you.

H. Hunter Handsfield, MD

26 months ago

Welcome to the forum. Thanks for your confidence in our services.

Your question reveals a basic misunderstanding about HIV and the HIV tests. It's a very common one, so I'm taking the opportunity for one of my occasional blog-like replies intended to educate forum users in general, not simply respond to the user's questions.

HIV tests can tell two things: 1) Does someone have HIV? 2) Is HIV the cause of symptoms someone might have? These two outcomes are related but not the same.

It is not possible to have symptoms caused by HIV and to have negative blood tests. It has never happened and never will. (In theory there could be a brief period -- probably no more than 5 days in duration -- when symptoms might start but standard tests are not yet positive. if that happens at all, it is that brief and very, very rare. It cannot happen more than 2-3 weeks after catching HIV.) Therefore, someone newly infected might be completely without symptoms, but at the same time have symptoms caused by other things: a cold, allergies, pneumonia, heart attack, cancer, you name it. If the test is negative because it is too soon for HIV antibody and components of the virus itself (like p24 antigen) -- and therefore does not rule out the possibility the tested person is infected -- it DOES prove that the symptoms are not caused by HIV.

Stated another way, once enough time has passed for the test results to become positive -- with modern tests, NEVER longer than 6-8 weeks, depending on the particular test or combination of test results -- negative test ALWAYS overrule every other consideration. No matter how high the risk of HIV at the time of exposure (someone could have had unprotected sex with a known-infected partner), and no matter how typical the symptoms are for ARS, i.e. a new HIV infection, negative test results prove HIV is absent. Something other than HIV explains the symptoms. There has never been an exception to these facts.

Taking anti-HIV drugs as post-exposure prophylaxis (PEP) delays the time to conclusive test results. In general, the clock on test reliability ("window period") starts with the last dose of PEP. Thus negative test results become conclusive after 6-8 weeks (some experts say 3 months) after treatment, which therefore is as long as 3-4 months after exposure.

Those comments pretty well cover your specific questions, but to address them directly: First, you had a very low risk exposure, given the rarity of heterosexually acquired HIV, especially in industrialized and westernized countries. I would have recommended against PEP. Second, your symptoms are not typical or even suggestive of a new (or longstanding) HIV infection. Finally, and to the main point, your negative test results prove both that you do not have HIV (assuming no more recent exposures not mentioned) and that HIV is not a possible cause of all these symptoms -- no matter how persistent they are or how "weird" they seem. There is no point in further RNA testing (which doesn't detect any more infections than the antigen and antibody tests), or any other HIV testing of any kind.

I have no awareness of the sorts of report you describe, i.e. someone not testing positive for months or years after taking HIV treatment, and I would not trust any personal testimony from such persons. Even legitimate medical case reports may be suspicious, especially in past years when testing was not as refined and effective as today.

So all I can do at this point is suggest you keep working with your doctors on any symptoms that continue to concern you. But please stop worrying about HIV. You don't have it.

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

HHH, MD

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26 months ago

Thanks for your reply Dr. H. So is the only advantage of the RNA test that it can detect earlier in the window period? And after that point there is essentially no difference in the effectiveness of the two types of tests? I was under the impression that searching for the virus itself would be more accurate than searching for the antibodies. Is there any reason why someone might not produce antibodies and therefore should choose the RNA test? In my case I'm simply just having trouble believe rheumatoid arthritis symptoms are just a coincidence a year after this (no other exposures of any kind), so I will probably test again at some point in the future just for peace of mind and ability to carry on with daily life, though I understand and respect your opinion and expertise that the tests have already been conclusive. Thank you again.

H. Hunter Handsfield, MD

26 months ago

Thanks for the additional questions. They raise important issues about HIV diagnosis and an opportunity to continue my blog-like reply.

HIV RNA testing in fact is not recommended for HIV diagnosis and not usually used for that reason. Its main use is to determine viral load in people already known to be infected. In theory, RNA can be positive before the AgAb or antibody tests are positive, and RNA testing is done an all blood donated for transfusion, to detect rare cases before the other tests are positive. But it very rarely shows up as the only positive in people following a new or concerning exposure. Anxious persons often seek such testing, but I've never had a case in which RNA was the only positive test.

There is no such thing as having HIV but not producing measurable antibodies. In addition, HIV p24 antigen often is detectable in the blood. As a result, it never happens that the AgAb test (or antibody test) is negative in a person with HIV more than a few weeks in duration. In the early days of HIV and the first antibody tests, no longer in use, there were concerns that immune suppression or other factors sometimes could interfere with antibody detection. But that's no longer the case with the modern HIV blood tests. There are no medications or medical conditions that interfere with accuracy or time to positive results with the HIV tests now used universally -- even if some online source and even some health professionals believe otherwise.

Your symptoms really don't matter at all. "Coincidental" symptoms that are the same as in HIV happen all the time. Probably 90% of all human infections -- from colds to pneumonia to influenza to urinary tract infections etc etc -- cause some of the symptoms also seen with HIV. The same is true of inflammatory conditions like rheumatoid arthritis. Therefore, symptoms almost never are useful indicators of HIV infection. Even when typical ARS symptoms occur after a high risk exposure, usually conditions other than HIV are responsible. Blood test results ALWAYS overrule all else: no matter how high the risk of infection at the time of exposure, and no matter what symptoms someone has, negative HIV AgAb or antibody tests are solid proof against HIV infection.

OK?

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26 months ago

Thanks for your detailed replies, Dr. H. Though difficult at the moment I will make more of an effort to accept the results of the tests.

H. Hunter Handsfield, MD

26 months ago

I wish you success in doing so. I'm glad to have taken you at least this far. Best wishes and stay safe.---