My LLMD team is putting me on 2 new supplements for my SFN symptoms. We are going to give it a shot for a few months and see if it helps anything.

I'll be taking Phosphatidyl Choline 500 mg twice a day and Phosphatidyl Serine 100 mg once a day.

I noticed that Dr. Jay Cohen used PC for his erythermalgia.
SUPPLEMENTS AND HERBS IN THE TREATMENT OF ERYTHROMELALGIA

How are you feeling these days, mg?

It has been rough. I have been flaring for the last 2 weeks. I started IV antibiotics a few weeks ago, which insurance is covering since they deemed my case is serious enough to warrant them. My iSpot retest came back positive and that was what BCBS needed to prove that I failed oral abx.

So I'm not sure if the meds are kicking my butt or if it's the change in weather. I have been in full body burn mode and my face has been leading the charge. Is anyone else in a flair right now?

On a positive note, with this new treament, my atypical face pain has been starting to disappear. I hope it stays gone.

I've also been working with a vestibular specialist who believes that the nerve in my ear was damaged even through my ENT testing didn't show much. She wants me to keep after my PCP and/or neurolgist and try to get them to approve IVIG.

I'm just taking this one day at a time..... I hope you are doing well.

Fingers crossed that the IV antibiotics help.

I was flaring about week ago pretty badly, but it's been waning.

I'm seeing a Johns Hopkins hormonal specialist next month to try to get me squared away with HRT since my current doc is just throwing darts. Of course I'll be mentioning the SFN and see what, if anything, she might have to say suggestion-wise. Just having a doctor not shrug would be nice.

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

I've been considering mHBOT too. The only thing stopping me is I found out I was claustrophobic during an MRI. Not good. I have heard people saying Cumanda helps with the Bartonella symptoms, mainly the neuropathy. I have ordered some. I was able to get generic Mepron and my insurance covered the whole thing. I paid $0. I was shocked. It is definitely killing Babesia. So another layer is being chipped away from the onion.

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."


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I should add, rest in peace Dr. Cohen. I did not realize that he passed away last year. He was wealth of knowldege on all types of neurological conditions and put great content out into the world.

JayCohenMDFoundation.com

I have been flaring really bad for about a week. Have you treated Bartonella or Babesia yet?

I did not know that Dr. Cohen passed away. We have lost a wise and very compassionate voice for neuropathy and other medical concerns. Sigh...

As far as vertigo goes, I have had over the past 40+yrs several vertigo spells. 3 were severe with huge instability and the last one was just 2 months ago which was positional lying down in bed. I was dealing with that last one, and taurine was helping. But you know, my accident I tripped in the hall upstairs and
stumbled into an opposite wall rather hard (hurting my right side severely and getting 3 bad bleeding scrapes on my right elbow.) For some reason hitting my right side this way, and hitting the floor hard, stopped my vertigo instantly! It was a painful event to be sure but now I can lie on my left side in bed again.

I had a electronystagmagram in the late 70's which told me that the auditory nerve in my left ear was not working. But then I was not deaf in that ear as would be expected from that? A little hearing loss but not much, in reality. When I have had my vertigo attacks they always center on that ear. The specialist ENT back then said it was either due to an accident or head hit on that side, or the measles which is a common nerve viral culprit for the ear.

Today, tick borne illness could be added to the list of auditory nerve damage.