Quote:
Originally Posted by mrsD
May I ask what antibiotic? Is this new?
Many of them were suffering from low B12 due to aggressive use of proton pump inhibitors for GERD, which seems pretty common in SD patients.
Also magnesium is very useful for them. One gal had black hands from severe Raynaud's and had tried all the drugs available to possibly increase her circulation. I had her on Magnesium and Vit E and she thus avoided the amputation, which was held over her head! ...So I am very curious about the antibiotic.
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Hi MrsD,
Thanks for the reply. Ref SD, my AP protocol is 100mg minocin twice daily and 1200mg clinamycin IV's for 5 days every month. I see one of the 3 expert AP docs in the Country with lots of experience curing folks with autoimmunes. The concept of low dose antibiotics has been around since the late 70's, but this is not an established American College of Rheumatology protocol. Therefore, numerous folks do terribly on the existing harsh drug protocols, and in the case of SD, many die. On the other hand, the prognosis is very good for those that start AP early before permanent damage occurs. I am a good example of this, as well as many others on AP.
Ref Raynauds, 95% of all SD folks have Raynauds, and so do I. AP does not seem to do away with the Raynauds, but it is typically fairly manageable. Many male and female SD folks take Viagra (also marketed as Ravatio) for their Raynauds. It is interesting that I have noticed that my PN is improved after taking 50mg Viagra twice daily (as Rx'd for me for PN and Raynauds and to keep PAH at bay). Obviously my SD effects the blood flow to my nerves. I haven't followed through with this Rx very well because the drug may also cause my legs to retain fluid (I'm still experimenting a bit).
Ref GERD, you are right that many SD folks suffer in the GI area as well, to include GERD and esophagus issues. And yes, many take PPIs like you mentioned. I have been on PPI's also, but primarily as a counter for NSAID use because of a preexisting OA hip problem. I do supplement with B-12 and a lot more, and fortunately my B-12 levels are fine.
I am not here to advertise AP, I am simply answering your questions. I am here to get help and encouragement for my PN. However, for more information on AP, you can take a look at the Road Back Foundation site **
From a distance all this medical stuff can be pretty interesting. However, as anyone reading this knows, we would all rather have good health than know a lot about our medical problems.
P.S. "No one should profit from someone else’s illness"
Randy