[Question #9473] Follow-up To False Negative and Medical Results
32 months ago
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I apologize if I find myself here again. As you may know from previous post, I tested negative on day 22, day 30, and day 135 post high risk exposure using 4th gen lab test at my primary cares doctors office (Kaiser) and negative oraquick multiple times weeks 17,18 and 22. It is now 10 months since my exposure and I still believe my last test was a false negative due to symptoms I initially had and persisted until now. I had prominent Mesenteric lymphadenitis on day 32 after testing negative on day 30. I had severe joint pain on left side of my body (I.e., wrists, ankle) and muscle pain on left side. I had bad headaches from week 3 to 5 months post exposure. My WBC was at 4.4 when I tested negative on day 135. Prior to that my wbc was usually around 5-6 historically. I had fatigue a couple night sweats, muscle twitching week 7- to 6 months. At 6 months I developed a sore throat that last two weeks. I felt a lump on my right side of neck which then disappeared. At month 8 I developed a cough that lasted 3.5 weeks! Lastly, I had body itch on arms and hands that lasted for 1 week and my nose had a minor rash. With cortisone, it went away.
Questions:
1) was my last lab test at day 135 a false negative result since I experienced all of this? I don’t think my abdominal swollen lymph nodes were due to stress or anxiety.
2) Despite all the symptoms I have experienced early on and up until now, Is it necessary for me to retest? I am terrified to think my day 135 test was a false negative and then turn positive. Could it have been lab error?
3) Can I trust all my results this far? I had two negative oraquicks at 22 weeks post exposure as well to insure my lab test was not false however I know by now that oraquick is not as reliable as a blood test.
Thank you for being understanding.
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H. Hunter Handsfield, MD
32 months ago
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Welcome back, but like you I am sorry to see you found it necessary. FYI, I scanned your discussion 3 months ago and agree with all he said.
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You never had a false negative HIV test result. You have been seriously over tested. You do not have HIV.
Even the most typical symptoms of HIV usually have other causes, and the HIV antibody tests, or AgAb (4th generation) tests, never are falsely negative in presence of HIV symptoms. That is, if your symptoms were due to HIV, your negative results proved without doubt you did not have HIV. Stated another way, it is not possible to have HIV and at the same time have a negative antibody test, no matter how long since the infection was acquired. And the negative AgAb test result on day 135 confirmed with 100% certainty you did not have HIV. There are no medical conditions that have any effect on the reliability or timing of the HIV blood tests; your mesenteric lymphadenitis doesn't change anything. And of course there are innumerable medical conditions other than HIV that cause every symptom you describe, from common colds to nonspecific effects of other minor conditions. And all these conditions are hundreds of times more common than ARS.
Those comments cover all three of your questions, but to be explicit and assure no misunderstanding:
1) I also am confident that enlarged lymph nodes never are the result of stress or anxiety. Some of your other symptoms may or may not be psychological origin. But just because the cause isn't clear is not a rational reason to conclude HIV is the cause! That's plan wacko, to be honest.
2) There definitely is no need to retest for HIV, no matter what symptoms or medical problems you have now or may develp in the future.
3) And you also had two more oraquick tests at 22 weeks??? Good grief. It is certainly true that the oral fluids test can miss a few positives by blood test, but they still are hundreds of times more reliable than symptoms! Andyou also had numerous negative blood tests as well! Don't you understand how that doesn't compute? And
We like to pride ourselves for being understanding, and I do understand (and care about) your worries. But I am non"understanding" about irrational thinking. Do your best to accept and believe the reasoned, science-based perspectives you have had, both on this forum and probably from your own doctors. You do not have HIV. Do not have any more tests. Keep working with your doctors about other explanations if the symptoms continue. If despite all this you find yourself still worrying that you have HIV, the next step should be professional counseling to figure out why you are so resistant to reason and fact. I suggest it from compassion, not criticism.
Sorry if this sounds blunt, but that's how I intend it. Call if tough love, if you will. Best wishes--
HHH, MD
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32 months ago
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I appreciate your responses but I find the onset of symptoms suspicious when I have never experienced them in the past until I had the potential high risk. I asked her twice if she was “clean” and she confirmed twice that she said “yes. Trust me. I am”. I know the word clean is not appropriate but it was used during the convo with her for a better lack of term. If you think I have tested sufficient and no further testing is needed, unless I get myself reexposed again, then I will put this potential exposure to rest and move forward with my life.
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H. Hunter Handsfield, MD
32 months ago
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It's human nature to worry about HIV given the timing of your symptoms. But that's a trivial rationale for all you are going through, and a scientifically untenable one. You have incontrovertable evidence you do not have HIV. And now on top of everything else, you provide strong evidence your partner doesn't have it.
It is not HIV that causes symptoms, but the immune response to the virus. The immune response is reflected in teh antibody tests. As Dr. Hook said in your first thread, and I have said here, it is simply impossible to have symptoms of HIV infection and not have a positive antibody test. It has never been known to happen, ever among the millions upon millions infected in the 40 years of the known world wide HIV/AIDS epidemic. Do you really think you could be the first???
"If you think I have tested sufficient and no further testing is needed, unless I get myself reexposed again, then I will put this potential exposure to rest and move forward with my life." If you are able to do that, wonderful; that is exacly my goal for you. You were "sufficiently" tested many weeks ago. Good luck with it.
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32 months ago
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Respectfully, I do not feel I over-tested except for the oraquick oral swab. I had two ag/ab in the window period and only one outside the window period and beyond the conservative 90 days hence why I feel trusting one lab test is hard due to human error. I can rely on the accuracy of tests but when someone else is handling my health and potentially does an error in the process, it can cost my life. I appreciate all you guys do to answer questions and provide your guidance in how to deal with testing and symptoms. Please close this question. Sincerely.
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H. Hunter Handsfield, MD
32 months ago
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Thanks for the explanation, which makes sense (sort of), even if it suggests your providers are perhaps not fully up to speed on HIV/AIDS! Best wishes and stay safe.---