Waging War On My Peripheral Neuropathy (PN)

[Randy]

Hi Everyone,

I was going to just PM Kim and Maz, but thought it's possible others could benefit from it.

From what I've researched and seen on the BB, not too many SD folks have the SD-attributed complication of Peripheral Neuropathy (PN). To make a long story short, it's a burning pain, and of course, there are much worse SD complications.

Anyway, it appears my PN, which has improved a lot as my SD has improved since being on AP, is due to vasculitis or inflammation of a nerve vessel that supplies nutrition to the nerve(s). This appears to be the case because the vasodilator Sildenafil (Viagra) helps some. Calcium Channel Blockers like Nifedapine are supposed to help here as well.  I could not tolerate  the Nifedapine as it caused my legs to swell –  fluid retention.  I guess this makes sense because SD does cause leaky blood vessels.

Dr. F. has Rx'd 50 mg Sildenafil twice daily for my PN (helps Raynauds and keeps PAH at bay, as me), but I think this causes fluid retention in me as well.  So I am experimenting carefully.

Dr. F. also Rx's Lumbrokinase which improves circulation and thins the blood a bit (really helped with my fingertip sores during winter).

Kim – yes, sauna improves circulation….

Oh yeah, I'm using the ReBuilder stimulator as well for the PN, and it does help.

I want to beat my PN, just like I am beating SD.

Any recommendations?

Randy

Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"

[Parisa]

Hi Randy,

I'd also look into supplementing Niacin.

[Kim]

Hey Randy,

When my SD was at it's worst I had big time neuropathy with horrible tingling and burning in my arms, hands, legs, and feet.  My feet were the worst, and I still have slight burning in them, but all of the other areas are totally improved and normal.  Everything for me improved with Lyme tx.  It's possible you need to change up your abx protocol and go after different bugs.

Keep on blasting! :roll-laugh:

Take care…..kim

p.s. Maz is out of town taking a much-deserved vacation. 😉

[Randy]

Kim,

Good recommendation.  I'll start looking into this in Aug and Sept.

Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"

[SusanSD]

Thanks for sharing Randy. Always glad to follow your progress. I don't think I've had much PN but the first year or two, I could not stand more than 30 min. or my feet would tingle and then if I kept standing, be throbbing with pain. I attributed that to more of a circulation issue.

I can stand for hours now AND I can wear moderate heels again. I thought I would never get to wear heels again, so this is a nice surprise.

Are you taking digestive enzymes? Just curious.

[Randy]

Hi Susan,

Wonderful to talk to you again. I am taking Lumbrokinase, which is pretty good for circulation.  But I am not taking Neprinal. Are you taking a digestive enzyme?

Randy

Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"

[Author]

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