Quote:
Originally Posted by ElaineD
en bloc: I told my Neuro that I would be on IgG by the time he wanted to run the tests.
He said that I should take the tests at the end of an infusion period.
I agree that the IgG will still be in my system! But I think most of what he is looking for has to do with toxins.
I don't know what tests he's running. I'm not the least bit optimistic about finding anything. I think he just wants to cover every base in testing.
MrsD. if it IS CMT, I guess it is what it is, with no cure. Would it appear suddenly and then not have any progression? I went from perfectly FINE to profound neuropathy in about a year and a half. (2009) With no progression since then. I guess genetic testing is in order. My Immunologist has run some genetic testing, but it was mainly around my CVID.
I tried Jarrow Formula Methyl B-12 for about 18 months, at 45,000 mcg/day. Hoping that I would see some improvement.
In fact, I would say my foot drop is worse. Well, I gave it a good try.
And it seems that my Neurologist has NO interest in B-12 treatments. I had thought maybe injections would be more effective.
Since I had a 95% block of my LAD coronary artery ('the widow maker) that was cleared and stented in 1999, I feel that the past 14 years are 'gravy' and tho' they have been filled with one weird condition after another, I have had the joy of many years with grandchildren and friends.
So I think all of this is manageable, in one way or another.
Hugs, ElaineD
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I think that is a tad much for B12 dosing. 5,000mcg a day would be more than enough if used every day. (was this a typo by chance?)
Since you suspect Macrobid as a culprit I'd also do acetyl carnitine, and especially the CoQ-10 because of your statin use. Both of these supplements, are suggested for DNA damage.
After 5 yrs one study found CoQ-10 synthesis is damaged by 50% when using statins. It is important for your muscles, and heart to have CoQ-10 to work on energy production by the mitochondria. The new water soluble types like Qunol and Q-gel, allow for less dosing. 100mg a day may be enough, compared to 300mg+ a day for the old oil gel formulas.
You could add in benfotiamine 150mg a day, to enable thiamine. Thiamine has always been historically used for neuropathies. Doctors have dropped it, when gabapentin came out, and that is a shame, because thiamine does work.
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Weezie looking at petunias 8.25.2017
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