NeuroTalk Support Groups - New supplements for SFN symptoms

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NeuroTalk Support Groups (https://www.neurotalk.org/)

- Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)

- - New supplements for SFN symptoms (https://www.neurotalk.org/peripheral-neuropathy/242028-supplements-sfn-symptoms.html)

onebeed

11-19-2016 09:19 AM

By the way, if you are still having neuropathy after treating Lyme, it's probably Bartonella. Bartonella is the one most often associated with neuropathy.

For everyone else on the forum - you don't have to have a tick bite to get Bartonella. You can get it from a cat scratch too. The testing is really poor for Bartonella as there are a lot of different strains and they only test for one. So you could have a different strain and it won't show up on the test.

janieg

11-19-2016 12:24 PM

Quote:

Originally Posted by tj71 (Post 1229151)

Have you thought about going to John Hopkins to see if they can find out what is wrong?

Yes, I've considered, but I've had a full-blown neurological work-up by a very well-respected head of neurology at another Baltimore hospital. When I considered getting a second opinion from Hopkins, I found this when looking into it. Given that I fall into this category, I opted not undergo more drama at that time.

Johns Hopkins Neurology and Neuromedicine: Small Fiber Sensory Neuropathy

"A small percentage of patients with SFSN experience sub-acute onset sensory disturbances diffusely over the whole body, including the trunk and sometimes even the face. These patients have non-length-dependent SFSN and almost all cases are idiopathic."

_________

NicoAvA

11-24-2016 02:57 AM

"sub-acute"... would be great news, right, as it would mean it would go away and not be chronic ?

Quote:

Originally Posted by janieg (Post 1229190)

Yes, I've considered, but I've had a full-blown neurological work-up by a very well-respected head of neurology at another Baltimore hospital. When I considered getting a second opinion from Hopkins, I found this when looking into it. Given that I fall into this category, I opted not undergo more drama at that time.

"A small percentage of patients with SFSN experience sub-acute onset sensory disturbances diffusely over the whole body, including the trunk and sometimes even the face. These patients have non-length-dependent SFSN and almost all cases are idiopathic."

_________

newToSFN

12-14-2019 08:05 PM

Quote:

Originally Posted by madisongrrl (Post 1229137)

I've been told that abx don't work so well for those coinfections, so I've been on a few herbals - Banderol, Quina and Microdefense (contains artemisinin). I know some people take Mepron, but that stuff is both potent and expensive, so I'm not too keen on it.

For IV antibiotics, I did 4 weeks of Invanz and just started Rocephin last week. I'm not going to stop treating until my iSPOT says I have ZERO LYME! Then after that, either my nerve damage gets better or it doesn't.

I've been corresponding with Lyme patients who have substantial full body nerve damage, and some have recovered entirely by getting IVIG and using HBOT. I even corresponded with a person who healed just using HBOT. So I'm going to have my LLMD team test all my subclasses on the off chance that I could get IVIG. Then I'm going to look into getting a home mild HBOT unit after my treatment is complete.

Have you tried HBOT yet? If so, what were your results?

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