dianaD Posted April 3, 2006 Report Share Posted April 3, 2006 Hi all,A few of you know this, but I thought it was time to share it with everyone. Monocycline is being used for ALS, Shy-Dragers, MS, spinal cord injuries, etc., because it can repair nerves. I had a friend with Shy-Dragers (which also begins with autonomic dysfunction). He prescribed it for himself (we're both eye doctors) when he heard of the research being done with it.In about 2 weeks, his autonomic problems were improving (prior, his BP would DROP when he stood up), and within a month he was able to get off his other meds.I've been on it for almost 2 months now, and my improvements occured fairly suddenly at the 2 1/2 week mark. I have adrenedrgic POTS (diagnosed at Mayo) and I no longer have much tremulousness nor adrenaline rushes. Unfortunately, I still have trouble breathing, though.I'm going to discuss it with the docs at Mayo next month, and I have an appt. with Dr. Grubb in Sept. It doesn't appear that docs have tried this drug with POTS yet, and I can't imagine why.I am usually reluctant to discuss a treatment before it is "proven", but with pots, all treatments are what we call "off-label" anyway! And, this drug (an antibiotic used to treat ACNE!) has been around a long time, and we are aware of its side effects. It is oral, not very expensive, and familiar to docs. HOWEVER, they may not be aware of the neuroprotective effects of minocycline. My neurologist was familiar with the research, and decided to try it for me.I will never know if I got better because of the minocycline, or if I was destined to get better then, anyway.... But NOTHING was easing the feelings of too much adrenaline. Now, that's gone. yippee.I'd be happy to answer any questions you have. Neurologists are the most likely to know about the drug, because it's effects involve the nerves...Hoping and praying, Quote Link to comment Share on other sites More sharing options...
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