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Old 11-06-2013, 04:50 PM #4
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ElaineD ElaineD is offline
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Join Date: Nov 2013
Location: North Carolina
Posts: 293
10 yr Member
ElaineD ElaineD is offline
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ElaineD's Avatar
 
Join Date: Nov 2013
Location: North Carolina
Posts: 293
10 yr Member
Default Macrobid aka nitrofurantoin

I took a common antibiotic for chronic UTIs. It turns out that all of the antibiotics for UTIs have a rare but clear cluster of side effects that involve peripheral neuropathy, up to and including death.

One of the effects of the PN is that my toes are dusky purple, due to poor blood supply due to poor nerve conduction to keep the blood flowing. My feet are usually icy cold, although very occasionally bright pink and hot!

The first thing I noticed actually was very cold feet, and asked for a Peripehral Vascular Test on my legs, because I have severe coronary artery disease and was afraid it was affecting my circulation in my legs. But my circulation in my legs was better than normal!

I know people feel better when they change their diets…..I also know that the placebo affect works in 50% of all things tried for all conditions. I am doubtful that anything will help my PN, except if it happens to be from demyelination of the nerves, in which case perhaps Methyl B-12, which I took faithfully for a year and a half in very large doses related to my weight, might help. But I didn't find any change after a year and a half.

I'm hoping to find out here if it makes sense for me to resume to B-12 treatment. And if so, what products in what amounts and in what manner.

I have also been diagnosed with an Immune Deficiency Disorder (CVID) and have been working to find the right IgG treatment. The first product I tried, Hizentra, caused reactions and I had to discontinue. I am to start Gammagard as soon as the treatment is approved by my insurance company.

I know that PN is sometimes successfully treated with IgG, administered usually in large doses by IVIG. My doses are smaller, and I'm doing them at home subcutaneously, so I doubt if they will help my PN.

But one can always hope.

Thanks to those of who answered my post. I guess I realize that I'm not optimistic about truly changing my PN, at this point. I'd like to be, I really would.

But my research and efforts have not yielded much hope, in the way of science based treatments.

Hugs, ElaineD
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