Gingergrrl
Senior Member
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- 16,171
@Thomas wow!!! Thank you for sharing all that. I am not at home right now but plan to type more later in response to your incredible phone call which you handled brilliantly on the spot.
@zzz and everyone else reading this, I actually had the pleasure of speaking with Dr. Goldstein (DG for now on) himself this afternoon.
Dr. Hyde then called DG's wife, who put him in touch with DG. Hyde asked him if he would take my call, which he said he would. But Dr. Hyde went ahead and said I would be calling him immediately (which I wasn't happy about as I was already in a PENE state from having been on skype with Hyde for an hour and wouldn't have enough time to craft what I wanted to say). Regardless, I called right away.
I have good news and bad news. The bad news is that DG is in very poor health and is currently in a nursing home unable to stand up or speak much and suffering from an early stage of a type of dementia and heart problems. Hyde would not disclose exactly what it was but he said it was bad.
The good news is that I was able to cheer DG up very much by calling him and expressing the ME/CFS's patient population's gratitude for his work, and thanked him for writing down his theories for people to follow (and hopefully researchers too -- although he told me not to hold my breath for that one).
He did mention that his treatments were all trial and error and that you simply had to find the right combination.
He said IV's worked best if you can someone to administer them regularly.
He said if you got a bad reaction to a drug it was most likely not worth fiddling around with it anymore, and that if you didn't get a response to most oral medications that day or within a few days of taking it regularly, you should probably move on to another.
He referenced the chart posted above (the one from Tuning the Brain) as a good guideline but could not tell in advance what would work for what.
I could tell that after several minutes of conversation he was beginning to fade and I felt bad and didn't want to take up too much of his time. Of course, I didn't get a chance to ask him any of the 100 questions that popped into my mind AFTER the call ended as is so classic with me. I should have confirmed the ressurection cocktail, discussed NE in greater detail, and ask what his favourite drugs were right before retirement etc. I probably should have asked if there was a manuscript of Brain Static, the book he never completed.
He said I could in a couple weeks, but also asked not give out his phone number.
All in all he was a delightful person to speak to and I feel so bad that such a great person had such a rough career because of the stupidity of selfish regulatory boards and manipulative patients. And sorry if I didn't provide any new information but I felt the need to make conversation with him before peppering questions at him out of respect.
@Gingergrrl in response to your last question it appears that in both BBTB and TTB that Dr. Goldstein writes of several manipulative patients over the years suing him for no reason or refusing to pay their bills which ended up costing him a lot of time and money.
Although the medical boards and egotistical regulatory bodies were the bigger problem.
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I really hope it works! Thinking of you. Keep us posted.I just paid $300 for Gastrocrom (my portion after insurance) but had no choice b/c my body shutting down and not tolerating food.
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I had no idea that he had started another book. ....Please ask him that question on "Brain Static" if you get the chance to talk to him again.@zzz ... I probably should have asked if there was a manuscript of Brain Static, the book he never completed.
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He was quite slow to speak when I spoke to him and apparently he is bedridden. I sort of feel bad just ringing him up especially since I doubt he'll remember our conversation. As for the bee venom I don't think he had bees sting his patients. In the books it seems to suggest they were injections.I had no idea that he had started another book. ....Please ask him that question on "Brain Static" if you get the chance to talk to him again.
I wonder what he thinks about the radiation theory of causing CFS and rituximab treatment too.
I saw him back in 1998. I now regret that I did not stay more than 2 weeks and try more things. He was about to try bee venom on me and I regret missing it.
I want to try it now but I do not know if he actually had a bee stinging patients or did he buy/get bee venom prepared?
If anyone knows, please tell me.
Thank you very much for sharing, Thomas.
does anyone know which version of guanfacine Dr. Goldstein used, the immediate (Tenex) or extended release (Intuniv)? In his books he only references the drug name but does not indicate which version he uses.
Cheers.Extended.
Cheers.