Originally Posted by tj71

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

Originally Posted by janieg

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."


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Originally Posted by madisongrrl

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.