bamagirl Posted September 30, 2005 Report Share Posted September 30, 2005 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 Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted September 30, 2005 Report Share Posted September 30, 2005 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. Quote Link to comment Share on other sites More sharing options...
DawnA Posted September 30, 2005 Report Share Posted September 30, 2005 Thanks for doing this. I have been waiting for Chad's post on Dr Low's supposably miracle drug. i am feeling desperate here. Dawn anich Quote Link to comment Share on other sites More sharing options...
Gena Posted September 30, 2005 Report Share Posted September 30, 2005 Yes, I've been waiting for Chad's reply too, so I'm glad you're following up on this. Although I am not expecting anything miraculous! Hope you have a good day.Gena Quote Link to comment Share on other sites More sharing options...
Ernie Posted September 30, 2005 Report Share Posted September 30, 2005 HI,I think Karyn called Dr Low next week and she told her that he was studying the Mestinon. Quote Link to comment Share on other sites More sharing options...
briarrose Posted September 30, 2005 Report Share Posted September 30, 2005 I hope it's not the Mestinon because they were very careful on the patients they picked. Pretty Skewed! Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted September 30, 2005 Report Share Posted September 30, 2005 If you read further into Chad's thread, you'll see that it was, in fact, mestinon. Nina Quote Link to comment Share on other sites More sharing options...
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