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hypotemusea (@hypotemusea)

Small Fiber Neuropathy and genetic testing?

Neuropathy | Last Active: Oct 16, 2020 | Replies (28)

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@hypotemusea

Hi Jennifer, thanks for all the info and advice! You are right that Lyme is a possibility. I lived in Eastern US for several years where I was outdoors a lot and also lived for some time in South American jungles and forests, although my home country is in Southeast Asia (where I currently am). I have friends who've dealt with chronic Lyme complications so I'm aware of how bad it can be. In my country here there's not as much awareness. I took a Lyme antibody test here, and it came back negative, although of course that doesn't really say anything like you pointed out.

As far as I'm aware I've been bitten by ticks twice, first time in upstate NY in 2015 and second time in rural Guatemala in 2018, I immediately took antibiotics the first time (having seen what Lyme can do I didn't want to take chances!) but not the second. My hunch is that it isn't Lyme because I don't really have joint pain? My main symptoms are the nerve pain, tingling, constant burning sensation in my hands and feet. I feel that the pain is more nerve-related, not so much the joints. I have pain in my elbows but they were very hypermobile so that might be the culprit. I don't really have any symptoms in the larger weight-bearing joints, fortunately. My rheumatologists did an ultrasound for my hands to look for inflammation and there was none. Steroids and anti-inflammatories had no effect on my pain.

So there's not much I can do to further the Lyme investigation for now while I'm here, but when I return to the US I'll definitely seek out a more experienced Lyme practitioner if my health issues still persist.

And thanks for bringing up PTSD as well. It's why I suspected RA at first given the documented links between PTSD and autoimmune diseases like RA… but I've done many comprehensive blood and antibody tests to find evidence of autoimmune issues and they all came back negative. It's certainly possible that I have something autoimmune going on that those tests are not finding, but I'm confident to rule out the big culprits like lupus and RA for now. It's certainly a detective hunt!

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Replies to "Hi Jennifer, thanks for all the info and advice! You are right that Lyme is a..."

@hypotemusea it’s interesting you mention PTSD as a potential cause of some autoimmune disorders for some people. I was recently diagnosed with PTSD and I developed 2 potentially autoimmune diseases after some traumatic events in my life. Neither is curable and both are hard to treat. My diseases don’t have a definitive, concrete cause from the medical community but it is awfully suspicious to me.