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Old 08-30-2012, 11:09 AM #31
Mariel Mariel is offline
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Mariel Mariel is offline
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Marlene, I take Alpha-Lipoc acid. Is that the same as R-Lipoic? I am glad to hear it helps this, will continue, maybe increase amount. I do get a small amount of Co-Q-10 in my sublingual B Vitamins from Source Naturals. But it's small. Years ago I tried l/4 of the larger dose my husband took of Co-Q-10 and had a bad reaction, spasticity very bad, locked up--I believe this reaction is because I have Porphyria, and it could have been from an additive in the pill rather than the Co-Q 10 itself. Anyway, I get 11 mg of Co-Q-Ten in my Source Naturals Multiple B's. Those of us with Porphyria start low on all drugs in case of unexpected reaction, as some drugs/supplements are not categorized as Safe/Unsafe, primarily because patients have not reported in about their reactions to the Safe/unsafe drug list managers. I tried Acetyl Carnatine many years ago, long before porphyria dx or even MS dx, and it was a "hoot". I took one before bed and during the night I had a mis-sensation that my nose was four feet long. I realized it was the Carnatine, the only new thing I took at the advice of a doctor who specialized in Chronic Fatigue. It happened again that night, but never again after I discontinued the Carnatine. Needless to say the doctor was not interested in following up on this. They rarely want to see "what else" might be going on, even if they are specialists. If it doesn't fit their model, phooey.

Let me know about the R Lipoic vs Alpha Lipoic, please.
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Old 08-30-2012, 12:09 PM #32
Marlene Marlene is offline
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Hi Mariel,

The R form of Lipoic Acid is determined to be more biologically active, therefore, you don't need to take as much. John first started with the Alpha form, I think 600 mg/day. He now uses the R form, about 150 mg/day. So if you switch, you may want to start at half the dose of the Alpha you are taking. If I remember correctly, the original study for Alpha Lipoic Acid was done in Germany with diabetics who had neuropathy and the dose was 900 mg/day. John never got to that dose. Like you, he starts with a lower amount and works up to a normal dose, but for other reasons.

The Porphyria sure poses a challenge for you. And yeah, the additives in supplement can be troublesome to figure out....is it the nutrient, is the additive or is it what the nutrient is derived from. And enteric coatings can contain phthlates.

And....a four foot nose!? How wild.
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Old 08-31-2012, 07:38 PM #33
Mariel Mariel is offline
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Thanks for the R Lipoic information, Marlene, I will buy that kind next time.

Marlene, the four foot nose was THERE, I tell you! Only in imagination, but I am not telling a fib. I didn't measure it, of course, estimating the length.
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