Dr. Jay Goldstein's Rapid Remission ME/CFS Treatments.

Gingergrrl

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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.
 

Gingergrrl

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@Thomas

@zzz and everyone else reading this, I actually had the pleasure of speaking with Dr. Goldstein (DG for now on) himself this afternoon.
I am home now and really wanted to reply in more detail and am excited to hear what @zzz thinks about this phone call!

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.
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 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.
I am sorry to hear that although I knew that he was quite ill.

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).
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.

He did mention that his treatments were all trial and error and that you simply had to find the right combination.
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.

He said IV's worked best if you can someone to administer them regularly.
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.)

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.
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.

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 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.

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.
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.

He said I could in a couple weeks, but also asked not give out his phone number.
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.

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.
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.
 

Thomas

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@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.
 

Gingergrrl

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@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.
@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.
 

Thomas

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@zzz where did you source the Hydergine? I can't seem to find a reliable online vendor. I see antiaging-systems.com has "Hy Pro", but i'm not sure how reliable they are. Thanks :)
 

Hip

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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.
 

Thomas

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Question: Why does Nimodipine at my pharmacy cost around $550 for 120 30mg tablets but on brandmedicines.com it only costs around $40 for 100 30mg tablets? I realize the one online is from a foreign country but the price difference makes me wonder if the online version is authentic?
@zzz @Hip
 

Thomas

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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.
 

JPV

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See How Much More Americans Pay For Prescription Drugs

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And more than ever, nearly half, fill a monthly prescription, according to this infographic from YellowRobin via visual.ly.

U.S. citizens pay more than twice as much for common prescription drugs than in countries like Canada, Germany and Australia.

For instance, the acid reflux drug Nexium costs the average British person $782 a year. However, Americans pay much more than that, $2,710.
 

Gingergrrl

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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.)
 

Ecoclimber

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Question: Why does Nimodipine at my pharmacy cost around $550 for 120 30mg tablets but on brandmedicines.com it only costs around $40 for 100 30mg tablets? I realize the one online is from a foreign country but the price difference makes me wonder if the online version is authentic?
@zzz @Hip

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@zzz ... I probably should have asked if there was a manuscript of Brain Static, the book he never completed.

.
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.
 

Thomas

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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.
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.
 

Thomas

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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.