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I am calling Dr. Low tomorrow!!!


bamagirl
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Hey guys,

I am going to call Dr. Low tomorrow and try to get a final answer on this new "miracle drug" he is supposedly working on. I am a current office patient of his and also a research patient as well and get letters all the time from him asking me questions and wanting me to try new drug studies. As for the mestinon, it did absolutely nothing for me. I hope I don't burst any bubbles, I just want to offer real hope, not false ones. I try to stay positive and realistic as well. Anyway, I will call his office in the morning and see if I can get a call back. I will post when I get some info. It may be a few days, he travels out of the country a lot because he is from Asia somewhere and his family still lives out there. I hope I have good news for us all soon!! Take care everyone-

Bamagirl

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Don't worry about bursting any bubbles. I remember reading about the Ampligen trials for CFS (Chronic Fatigue Syndrome) about 10 years ago. Was allegedly a 'miracle' for a select few but I never did hear the long term and the percentages.

Plus it was VERY EXPENSIVE, experimental and only the wealthy could afford it. So....I have learn to be VERY LEARY of ANY "cures".

I was also very fortunate enough to be part of a GHB study with an ex sleep doc for FM/CFS and sleep disorders...but after many months, it didn't help me...but at least I got a chance. Only a handful of people had great improvement and one woman had a miracle of sorts. So who knows the multiple etiologies we all have even if we do share MANY SIMILAR, DOCUMENTED symptoms.

And dont' get me started on the MLM stuff people sell! My sister and some other family members are selling expensive Xango juice and I was told that it was "cleansing my system" when I tried it. Hello, it was also washing out my electrolytes. I don't need laxative effects!!! thank you very much.

So, I tend to just keep my outh shut and listen or tell folks when they don't know what they are talking about.

Somehow, I think one of the autonomic sites would be posting SOMETHING about this new mystery study of Dr. low's.

Let us know what you find out.

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