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Boopka

03/28/23 10:00 AM

#408712 RE: falconer66a #408706

Falconer, do you know how many people are affected by HSP in the US and WW?

Thank you,

Joseph_K

03/28/23 5:25 PM

#408760 RE: falconer66a #408706

Thanks for posting about your condition and its connection to blarcamesine.

It's impossible for me not to imagine you trying it off-label, because, coincidentally your post mentioned baclofen. Some years ago I read this book – Heal Thyself: A Doctor at the Peak of His Medical Career, Destroyed by Alcohol--and the Personal Miracle That Brought Him Back – by a cardiologist (and professor of cardiology at Cornell), who was himself a stunningly extreme case of alcoholic dysfunction. He healed himself by taking baclofen, very off-label, after reading journal articles that led him to believe it would be effective. He experimented to find his proper dosage.

The book was his effort to popularize the treatment and get clinical trials undertaken. I haven't kept up, but I'm pretty sure his campaign was unsuccessful.

The book was an interesting read. (He brags quite a bit, but I think it was justified to balance, and make more meaningful, his vivid depiction of what a mess his alcoholism turned him into.)