Neuropathic pain and fear of HIV-2
Hello, I'm reaching out to you/the community, hoping to receive opinions/support. I am in further testing after unprotected intercourse 3 month ago (receptive vaginal).
I trusted the person; that was a huge mistake, it turned out he was sick with suspicious symptoms and not properly tested...
STI and HIV-1 were ruled out by lab tests. But there's the HIV-2 strain that is rare in my country but I was exactly in the setting (person traveled to endemic region and came back ill, see above).
A few days after the incident I got a sore throat that lasted for around 5 days, followed by a pulling and stabbing pain in both underarms. It became painful burning sensations over time plus in Jan I developed numbness in both hands. The pain and numbness went milder but still there. Plus neck pain, a major depression due to the anxiety, weight loss, brain fog...
I read peripheral neuropathy is common with HIV (can occur in early infections, too), a neurologist confirmed the possibility of the virus causing this. In mid march HIV testing again and neurological tests.
My friends and family do support me but they cannot stand my anxiety anymore (they only know me as a strong and stable person).
If I get a positive result I will be with a specialist for HIV-2 (they are very rare). This strain is much harder to treat, has limited options, and there are only a few people living with it. Means, if I caught it, there's very little support, no shared experience, no such optimistic outlook like in HIV-1. In the public, HIV-2 is not mentioned other than prevalent only in West Africa (I lived there in local communities, so no bias from my side), there is little research etc. I feel really alone. I know, I have to wait for the results, but I am so anxious about the future... Any thoughts, ideas? Psychotherapy did not help me, focusing on "other things" does not work, I am really desperate... Thank you in anticipation
I am so glad you reached out when you are feeling so alone. I can tell you've tried so many things to try to ease your mind as you go through this. I hope talking to others here (and you could try our FB group - https://www.facebook.com/HIVdotnet ) will give you some sense of community and support.
How are you feeling now? The symptoms you mention are so difficult, I know you must be in a lot of pain. I do have some articles on neuropathy and pain management. Let me know if you'd like me to send those links along.
We are here to listen, especially as you go through this testing process. Did they give you a sense for when you would find out the results? - Liz (Team Member)LizGreen Hi Liz, thank you so much for your quick response. I am utterly glad being in touch with you. The neurological investigation and the next antibody test will probably be administered on the same day (Mar 13/around 16 weeks after the incident). I am feeling extremely guilty about what happened and am very scared. The fact that this neuropathy onset was after the contact looks so suspicious to me. Doctors always say "tests over symptoms" and I do want to believe them. But I have doubts, I'm afraid of being optimistic whilst experiencing my body behaving so strange. Frankly, if I was diagnosed with Hiv-1, I was in a completely different situation. There are so much excellent treatment options and I have read a lot of wonderful stories about people managing it so greatly. With Hiv-2, everything is vage, much less promising, and no community to connect with... I am glad to talk to you here. Other than that, it's tough thinking about how to cope with this threatening virus type... I am open to any further advice/tips/thoughts... I am going to mark my calendar to check in with you closer to your test date. You are doing such a good job coping during this time, I really admire your ability to keep up with work and family despite all of this. I am sure you have some really difficult nights. Please keep talking to us, and let us know how you are doing - Liz (Team Member) Hi Liz, awesome! I really appreciate your support. I have an update: The hospital refuses to administer a test but they demand getting tested prior to the investigation. I managed to get a blood work appointment with a GP & HIV-1 specialist on March, 03. This test is crucial, I'm truly nervous. I'm so glad I have gotten in touch with you here, this means a lot and I'm trying my best to cope with the anxiety... I'll keep you posted! Thanks again and in anticipation.
I wonder if you have any thoughts on this, it relates to some of the things you were saying the other day - Liz (Team Member) 
Alafia (Peace) You have reached out to the right community of people. It seems that you and Liz have been un dialog. It seems as if you know a great deal about HIV and it's strains You also seem very aware of your options. Please continue to reach back and let us know how things work out and how this community can continue to support you. Khafre (H-I-V.net Team Member)
