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@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.
Dr. Jay Goldstein's Rapid Remission ME/CFS Treatments.
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@Thomas
I am home now and really wanted to reply in more detail and am excited to hear what @zzz thinks about this phone call!
Good for you for calling him even though you were not feeling well and it really is a once in a life-time opportunity.
I am sorry to hear that although I knew that he was quite ill.
Good for you for cheering him up! I am sure you made his day and I don't think he knows that people like us are reading his books and discussing his theories. It is too bad that current researchers are not aware or interested in his work. Whether they agree with it or not, there is such a wealth of knowledge base that he created which is not being used.
I would say IMO that is the case with ALL ME/CFS treatments b/c the patients divide into all these different sub-groups that we as of yet do not understand.
I suspected that he might say that (even though I personally had a horrible reaction to IV saline, I suspect that I am in the minority.)
I tend to agree with that too and the drugs that initially gave me horrific reactions, have never worked for me. Whereas there are some that are initially benign but may take a few weeks to feel the positive effects.
I think the chart is brilliant but is too complex for someone like me with no science background. But I am blessed to discuss it with a close friend from PR who is able to explain it to me at my level. I wish we could get other doctors to look at and study that chart.
There is no way you could have been prepared on that short notice and I am hoping that you will get to talk to him again. I am very curious as to his favorite meds right before retirement and his opinion of current treatments such as Valcyte, etc.
I think we can put together some questions in this thread and absolutely do not give out his phone number. I think he will respond better to one consistent person that he trusts and you can relay the responses to us.
I had no doubt that he would be a delightful person who would continue to try to help us until the very end. What did you mean re: manipulative patients? Do you mean patients who took advantage of his kindness? You did provide us new information and thank you so much for all that you accomplished today. I feel like it was a tiny bit of history in the making.
I am home now and really wanted to reply in more detail and am excited to hear what @zzz thinks about this phone call!
Good for you for calling him even though you were not feeling well and it really is a once in a life-time opportunity.
I am sorry to hear that although I knew that he was quite ill.
Good for you for cheering him up! I am sure you made his day and I don't think he knows that people like us are reading his books and discussing his theories. It is too bad that current researchers are not aware or interested in his work. Whether they agree with it or not, there is such a wealth of knowledge base that he created which is not being used.
I would say IMO that is the case with ALL ME/CFS treatments b/c the patients divide into all these different sub-groups that we as of yet do not understand.
I suspected that he might say that (even though I personally had a horrible reaction to IV saline, I suspect that I am in the minority.)
I tend to agree with that too and the drugs that initially gave me horrific reactions, have never worked for me. Whereas there are some that are initially benign but may take a few weeks to feel the positive effects.
I think the chart is brilliant but is too complex for someone like me with no science background. But I am blessed to discuss it with a close friend from PR who is able to explain it to me at my level. I wish we could get other doctors to look at and study that chart.
There is no way you could have been prepared on that short notice and I am hoping that you will get to talk to him again. I am very curious as to his favorite meds right before retirement and his opinion of current treatments such as Valcyte, etc.
I think we can put together some questions in this thread and absolutely do not give out his phone number. I think he will respond better to one consistent person that he trusts and you can relay the responses to us.
I had no doubt that he would be a delightful person who would continue to try to help us until the very end. What did you mean re: manipulative patients? Do you mean patients who took advantage of his kindness? You did provide us new information and thank you so much for all that you accomplished today. I feel like it was a tiny bit of history in the making.
@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.
Although the medical boards and egotistical regulatory bodies were the bigger problem.
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@Thomas I have both books and have read many portions of BBTB and read the entire companion guide by Katie Courmel. I have not yet read any of TTB but definitely plan to do so. I remembered that he had patients who did not pay their bills and that there were many issues with regulatory boards and funding, etc, but need to re-read b/c I did not recall the details. Thank you again.
Solution for the Tolerance Problem of Vasodilating Nitrate Drugs
Whereas vasodilating nitrate drugs like nitroglycerin, isosorbide dinitrate and isosorbide mononitrate (which vasodilate by increasing nitric oxide) unfortunately have tolerance and loss-of-effect problems, this study demonstrated that the vasodilating drug nicorandil does not produce tolerance, and does not lose its effect.
Like these other drugs, nicorandil vasodilates by increasing nitric oxide, but for some reason, is not subject to the loss of effect problem.
So nicorandil might be a good drug to try for vasodilation purposes in ME/CFS.
There is a thread on nicorandil here.
Whereas vasodilating nitrate drugs like nitroglycerin, isosorbide dinitrate and isosorbide mononitrate (which vasodilate by increasing nitric oxide) unfortunately have tolerance and loss-of-effect problems, this study demonstrated that the vasodilating drug nicorandil does not produce tolerance, and does not lose its effect.
Like these other drugs, nicorandil vasodilates by increasing nitric oxide, but for some reason, is not subject to the loss of effect problem.
So nicorandil might be a good drug to try for vasodilation purposes in ME/CFS.
There is a thread on nicorandil here.
Thanks @Hip however I should have been more clear on the name. My pharmacy quoted me on the generic and the online version was the brand name "Nimotop". It arrived in Bayer packaging and looked authentic, so perhaps this is a case of a foreign product having a much lower price point than inflated North American prices. But the price difference is just so dramatically different.
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I just paid $300 for Gastrocrom (my portion after insurance) but had no choice b/c my body shutting down and not tolerating food. Med prices here are insane. Brand version Valcyte without insurance is $5000 per month (which I did not pay.)
I really hope it works! Thinking of you. Keep us posted.
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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.
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.
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.
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.