About to try Mestonin// Any Tips?

JasonPerth

JasonPerth

Senior Member
Messages
134
Hi All, Im about to start Mestonin. i have 150 x 60mg. I believe the norm is to have 3x 60mg per day.
But ive been told different things from different patients

my gut is currently not too bad, just housebound with MECFS with moderate POTS/MCAS.

any ups or downs i should be expecting? side effects to expects but push through vs side effects to immediately stop ?

Any advice on Mestonin would be appreciated. If it doesnt work , my next step is Sodium Chromlyn in tablet form and Ketotifen
 
Kathevans

Kathevans

Senior Member
Messages
691
Location
Boston, Massachusetts
I was offered Mestinon by Dr.David Systrom, of Brigham and Women's Hospital, Boston, who is doing a study on it currently--in combination with low dose Naltrexone, I believe. I didn't decide to take it. It's a drug that is used for patients with Myasthenia Gravis, right? Debilitating muscle weakness? You can look up his work on YouTube, I believe, and you might learn a bit more. I decided, however, to continue work I'd been doing with Dr. Gregory Russell-Jones, the Australian biochemist who has worked on many of the issues related to B-12 and B2 deficiency, and which he believes are the source of most MeCFS and other related issues.

I've been working with this for about 8 years or so, and have made some progress. Each of us has found our way here in slightly different ways, but there are genetic similarities, I think. There is also the work of Dr. Ron Davis, head of Genetics at Stanford, whose work is on YouTube (
), who has a bed-bound son, and who has made some very interesting discoveries vis a vis these debilitating chronic conditions. Good luck with your experimentation. I look forward to seeing if Mestinon helps you. I took Fred Davis's "Deadlock Quartet" for years --which included L-carnitine. I stopped this at the recommendation of a doctor at Mass General Hospital because my numbers were high. But I've lived to regret it. Sometimes our pioneers are ahead of the doctors, I think!
 
JasonPerth

JasonPerth

Senior Member
Messages
134
Kathevans said:
I was offered Mestinon by Dr.David Systrom, of Brigham and Women's Hospital, Boston, who is doing a study on it currently--in combination with low dose Naltrexone, I believe. I didn't decide to take it. It's a drug that is used for patients with Myasthenia Gravis, right? Debilitating muscle weakness? You can look up his work on YouTube, I believe, and you might learn a bit more. I decided, however, to continue work I'd been doing with Dr. Gregory Russell-Jones, the Australian biochemist who has worked on many of the issues related to B-12 and B2 deficiency, and which he believes are the source of most MeCFS and other related issues.

I've been working with this for about 8 years or so, and have made some progress. Each of us has found our way here in slightly different ways, but there are genetic similarities, I think. There is also the work of Dr. Ron Davis, head of Genetics at Stanford, whose work is on YouTube (
), who has a bed-bound son, and who has made some very interesting discoveries vis a vis these debilitating chronic conditions. Good luck with your experimentation. I look forward to seeing if Mestinon helps you. I took Fred Davis's "Deadlock Quartet" for years --which included L-carnitine. I stopped this at the recommendation of a doctor at Mass General Hospital because my numbers were high. But I've lived to regret it. Sometimes our pioneers are ahead of the doctors, I think!
Click to expand...
Well aware of the Dafeo family, Especially the son who has even retweeted me on occasions as we share the same opinions on ME
 
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