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I heard something very good today that may bring..


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Hi again,

I just spoke directly with Dr. Low this am per phone conversation.  He said that the drug he is researching is MESTINON.  As we know, it is FDA aprroved for myaethenia gravis but not for POTS. 

Karyn

Karyn -

Thanks for this. I am a skeptic about 'magic-anything' so I had doubts. But I also know what mestinon does, and unless it does things we don't know - it wasn't about hydration at all.

But I have to admit the conversations sound so different! I hope ChadK can help answer some of these questions, or gets that report.

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Chad

First, congrats on the record deal.

Second, PLEASE be careful how you label FUTURE threads. Most of us old timers that have been around for YEARS with this illness are VERY SKEPTICAL of miracle cures and the lot.

Like Morgan says...if it sounds too good to be true.

Also the etiology of each case of POTS can be completely different, hence a 'one size fits all pill-fix-cure' isn't likely.

So, it's one thing to be hopeful but another thing to send false hopes. Not that YOU knowingly posted false hopes but a doctor or somebody obviously did.....so, well, lesson learned....

Good luck with the music gig.

Peace

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I am waiting for Chad to post the information but I find myself wondering if Dr. Low really believes he has a 99% cure rate with Mestinon. That does not jive with the experiences of the people on this discussion board who have tried it. Some have been helped somewhat, but others have not or have had side effects.

I would like to get the facts.

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Hi Jan,

I think the only way Dr Low can say it is a 99% cure is by biasing the study group so much that he only chooses participants in whom he is 100% sure Mestinon will work. The study is then not generalisable for the other POTS and/or NCS groups.

A section called "Limitations" should specify how they selected the study group and what they had in common with the controls and what they had similar.

I am eager to read the study also.

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I was at Mayo 2 times this summer . Dr Low never brought up anything about a new drug... Only mestinon.... I was not oneof the chosen ones for his study... Wont get into anymore except to say I am very intersted in this article/research that Chad has found.

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  • 3 years later...

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