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

[Hip]

I wonder if this thread would get wider attention/readership it deserves if its title were less bombastic and off-putting to long-term ME/CFS patients many of whom are understandably jaded and skeptical about any claims of "instant remission"?

@zzz let us know how you feel about the title of the thread. It can be changed it you wish.

Thanks Sushi. It was in fact me who proposed the original title, when this thread was created out of another thread. I agree the title unfortunately comes across as incredulous. Unless anyone has any other ideas, how about changing the thread title to something like:

Dr Jay Goldstein's Instant Remission ME/CFS Treatments — Very Rapid Improvements, Though Often Transient

What do people think? That would probably accurately describe how his treatments panned out. I think the intrigue is both how quickly the improvements manifested, sometimes within minutes, and also how quickly the drugs soon after often completely lost their effect.

Though just how many of improvements were transient, and just how many were more permanent, it's not clear. I have not been able to find any statistical info on the long term efficacy of the treatments that Dr Goldstein devised for his patients.

I read that Goldstein would sometimes try dozens of different drugs on any given ME/CFS patient, until he found a drug that produced a good result. However, when he did find an effective treatment for a patient, how often would that lead to permanent or long lasting improvements, and how often would it only produce a transient improvement? That is the question. There are some accounts in his book of long term treatment success in given patients, but that does not indicate the percentage of his patients achieving long lasting improvements.

So the question for me is, is it worth testing these drugs, some of which are unproven or even dangerous when administered wrong, if the effect we get is the same as from much safer supplements, i.e. the effect wears off. At least I would like to hear some more long-term success stories of said drug before trialing it. We should look at this issue critically.

Certainly with the more dangerous drugs, it may not be worth risk if the benefits are going to be short lived (although even just a week's vacation from ME/CFS is always welcome!). But there are plenty of other fairly safe drugs on Dr Goldstein list of top 23 drugs that might be worth trying.

Though this thread seems to be about not only various treatments to look into, but also trying to understand the biochemical perspective that Goldstein had of the brain in ME/CFS.

 

[Sushi]

Dr Jay Goldstein's Instant Remission ME/CFS Treatments — Very Rapid Improvements, Though Often Transient

Thanks Hip, that is too long for the software to accept. How about: Dr. Jay Goldstein's "Instant Remission" (Though Often Transient) ME/CFS Treatments. Or some other suggestion that is a few characters shorter than the one you proposed.

 

[Hip]

Thanks Hip, that is too long for the software to accept. How about: Dr. Jay Goldstein's "Instant Remission" (Though Often Transient) ME/CFS Treatments. Or some other suggestion that is a few characters shorter than the one you proposed.

Ah yeah, I forgot there's a 100 character limit on thread titles. If you remove the word "very" it seems to fit:

Dr Jay Goldstein's Instant Remission ME/CFS Treatments — Rapid Remission, Though Often Transient


Alternatively, since "remission" might be too strong a word, perhaps something like the following will be better:

Dr Jay Goldstein's Rapid Improvement ME/CFS Treatments — Fast Results, Though Often Transient

I think the second one is better.

 

[zzz]

I wonder if this thread would get wider attention/readership it deserves if its title were less bombastic and off-putting to long-term ME/CFS patients many of whom are understandably jaded and skeptical about any claims of "instant remission"?

On one hand, the title of this thread makes it sound like it's in the "too good to be true" category, and many people may skip it for that reason. However, Dr. Goldstein appeared to get results that were many, many times better than anyone practicing in the field, before or since, and to ignore this would be a disservice to Dr. Goldstein, as well as to the many people who could benefit from his treatments. Please keep in mind that the Introduction to Betrayal by the Brain - which was written well before Dr. Goldstein reached the apex of his abilities in treating people - starts as follows:

Most patients with chronic fatigue syndrome and fibromyalgia, as well as other disorders of central information processing, which I term "neurosomatic," are not difficult to treat applying the neurosomatic paradigm. About 50 percent of my new patients feel dramatically improved after the first office visit; 25 percent more are better after the second. Twenty percent more eventually respond to treatment, leaving about 5 percent that I cannot help very much.

As one of the few people here who have actually read the last three of his books, as well as benefited tremendously from his treatments, I certainly get the impression, both from reading and my own experience, that overall, the benefits of these treatments were long-lasting. There are quite a few case reports in his books where he describes tuning the treatments for a patient over a number of years until the patient was asymptomatic or nearly so. Although it was not uncommon for certain treatments to lose their efficacy after a while, Dr. Goldstein made it quite clear that he was usually able to tune the patient's protocol so that health was restored.

For this reason, I think that the phrase "Often Transient" in the title would be very misleading in the opposite direction. Who would want to bother with complex treatments that often have transient effects? And such a phrase goes contrary to both what Dr. Goldstein wrote and my own experience.

It's true that "instant remission" tends to exaggerate the results that Dr. Goldstein got, and for that reason serves a negative purpose in the title of this thread. But as cited above, he did achieve rapid remissions either total or almost total - and these were typically long-lasting. Although most of his drugs were capable of producing instant remissions on their own, in the vast majority of cases they did not. It was in combination with other drugs, typically over a period of a few days or more, that the remission was achieved.

So the one improvement in the current title that I would see useful would be to chance the word "Instant" to "Rapid". Now it's clear that those of us working on our own do not achieve results as easily as Dr. Goldstein did - no one does - but we're not Dr. Goldstein, and we don't have all his treatments available to us. For example, his two top treatments, as reported in Tuning the Brain, were IV ketamine and lidocaine, infused according to his specific directions. It is almost impossible to get this done these days. Yet Dr. Goldstein makes it clear that these treatments provided long-lasting benefits to many people when applied regularly, and by emphasizing the efficacy of these treatments, it may help others to get them done.

I think that Dr. Goldstein was in a class by himself, and that it is quite proper for the title of this thread to indicate this. Otherwise, there is another risk being run, namely that his treatments are seen as been just one more set of possible treatments in the huge variety of treatments that are currently available. Many people undoubtedly believe this; I do not. I think that we would do both Dr. Goldstein and the readers of this thread a disservice by downplaying what he has done and what he says.

Applying Dr. Goldstein's treatments in the way he recommended is difficult, but is extremely rewarding for those who are able to do so. They typically take quite a bit of tuning, and quite a bit of patience. But the potential reward is is great - full remission - and I would not want to downplay this, as it is this great reward that justifies the large amount of work that must be put into studying and applying Dr. Goldstein's work properly.

Therefore, I would think that an improvement on this thread's title would be:

Dr Jay Goldstein's Rapid Remission ME/CFS Treatments

But I would not want to change it any more than that, as I think that Dr. Goldstein's work fully justifies this title, and that people need to know that such rapid remissions are possible. I think that anything less than this would simply encourage the disappearance of Dr. Goldstein's work into the obscurity of which it is so undeserving.

 

[Thomas]

Going back to what @Hip and @Sidereal said about TGF-B1. I was thinking the exact same thing -- that Goldstein was so ahead of his time with regard to identifying this as a constant elevation in his patients. This cytokine consistently pops up in every co-morbidity I can think of that goes along with ME. Lyme, CIRS/mold, POTS, Ehlers-Danlos and other connective tissue diseases and collagen defects. It seems like they're all talking about it but no ones really going hard at it.

In BBTB Goldstein notes that Losartan is effective. In TTB he states it is not effective. I've been wanting to try this one and probably should get around to ordering to determining if it is helpful for me. When I last tested my TGF-B1 a couple years ago it was nearly off the charts. And I was doing a lot better then. I'm sure it's even worse now but this test is not available in Canada -- shocker.

This was one of the things I wanted to ask Goldstein about as well as VIP but like I said I fear he may be unreachable at this point...

Oh and I agree with @zzz above. If not remission than improvement or both.

 

[Sushi]

Therefore, I would think that an improvement on this thread's title would be:

Dr Jay Goldstein's Rapid Remission ME/CFS Treatments

See if the two of you find a title you are both happy with, tag me, and I'll change it.

 

[nandixon]

@nandixon, did you ever end up trying the ARB?

@Sidereal, I only briefly tried the losartan for just a few days, and I couldn't tell during that time if it would be helpful or not. I stopped it because its usage was going to be a little complicated (see below) and because I became much more interested in cimetidine (Tagamet) after I noticed how quickly the cimetidine was helping, and because the potential mechanism for cimetidine as an immunostimulant was fitting with a theory of possible immune suppression for ME/CFS, which I currently (slightly) favor.

With respect to the losartan - which I would have to go back and do a proper trial of, I started at only 1/4 of a 50mg tablet daily, and it appeared that in order to increase the dosage higher it was going to require that I also increase my Florinef dosage (from 0.1mg/day to something higher) to offset the blood pressure drop losartan causes. It may very well be that with time the blood pressure lowering would have ceased (tolerance to this effect is known to happen when using ARBs), and no increase in Florinef might ultimately be necessary.

 

[Sidereal]

Clinicians' reports of their own uncontrolled observations do not constitute good evidence of treatment efficacy because humans have a tendency to delude themselves into believing all sorts of things. You only need to read Goldstein's Instant Dismissals (scattered throughout his books) of various popular treatments other ME/CFS clinicians swear by to realise just how unreliable people's clinical observations are.

 

[Dufresne]

Is the companion book by Robert Lecour/Katie Courmel a good one? I'm looking for something accessible to get a better idea about his theories and approach to treatment. A good online resource would be even better, if it exists. Thanks.

 

[Thomas]

Is the companion book by Robert Lecour/Katie Courmel a good one? I'm looking for something accessible to get a better idea about his theories and approach to treatment. A good online resource would be even better, if it exists. Thanks.

The companion volume is good but it's different (It's basically like a "neurochemistry for dummies" type book, and also describes a day in the life of a patient at his office)but you don't get any of the case studies that Goldstein wrote about nor do you get to read the words of the man himself -- he has an interesting writing style.
I have both. And I have Tuning The Brain which you saw. I also got The Limbic Hypothesis which I enjoyed more than BBTB even though it was written before a lot of his treatment theories evolved and expanded.

 

[Hip]

@zzz
I think as you have provided much of the material in this thread sourced from Goldstein's books, you perhaps should choose the title. Though if its purpose is to attract readers, I suggest sober rather than sensationalized phrasing would work best.

The original "instant remission" title I suggested when this thread was first set up was inspired by your very rapid and long lasting full remission from ME/CFS, arising after a single dose of the Goldstein-like drug isosorbide dinitrate. But just how often such instant and long lasting remissions occurred in Goldstein's practice is a moot point.

Another title suggestion might be:

Dr Jay Goldstein's ME/CFS Rapid Improvement Treatments (Sometimes Achieving Full Remission)

This one covers both bases: his patients that improved from his treatments, and those who achieved remission. But I am happy to leave leave the title decision to you. I don't think the actual title matters all that much anyway.

As one of the few people here who have actually read the last three of his books, as well as benefited tremendously from his treatments, I certainly get the impression, both from reading and my own experience, that overall, the benefits of these treatments were long-lasting. There are quite a few case reports in his books where he describes tuning the treatments for a patient over a number of years until the patient was asymptomatic or nearly so. Although it was not uncommon for certain treatments to lose their efficacy after a while, Dr. Goldstein made it quite clear that he was usually able to tune the patient's protocol so that health was restored.

The thing is, without precise figures and statistics — and Dr Goldstein did not seem to provide any, at least in the three books you've read — a scattering of case reports recounted in these books does not really provide much of a handle on his success rate. You mentioned he treated 20,000 ME/CFS patients in his career; but as a percentage, how many of those achieved near or full long lasting remission? And how many as a percentage achieved significant long lasting improvements? We don't seem to have this info.

Let's examine the wording in the text extract you quoted above from Goldstein Betrayal by the Brain book:

About 50 percent of my new patients feel dramatically improved after the first office visit; 25 percent more are better after the second. Twenty percent more eventually respond to treatment, leaving about 5 percent that I cannot help very much.

So he is reporting that 50% of his new patients feel dramatically improved after their first office visit. Well we know that many of his drugs are capable of producing dramatic improvements, at least transiently. But what he is not reporting is how these patients felt the next month, or the next year. Out of the 50%, what percentage were still feeling the dramatic improvements a year later? I am not sure if that info is available.

I had dramatic improvements from Wellbutrin, and noticeable though more modest improvements from Lamictal, which are two of his drugs; but in both cases these were transient improvements that disappeared entirely after two weeks. (Although I will soon be trying his inositol treatment for drug tolerance reversal, to see if I can resurrect the benefits these drugs provided).

The Goldstein statistics I would be most interested in knowing was his long term ME/CFS improvement success rate, but not so much for the patients he only saw a few times and only tried a few drugs on, but rather for those patients he saw many times, and tried dozens of drugs on, ie, performed the full exploratory drug testing across his range of efficacious drugs, with the aim of finding the particular drug that works for the patient.

After all, this seems to be the essence of Dr Goldstein's treatment plan: it is a trial and error, adaptive, exploratory plan, rather than a pharmaceutical one-size-fits-all plan. So I would like to know, out of Goldstein's patients who received the full exploratory drug testing, what percentage those ended up feeling better, much better, or in near full remission — and maintained these improvements long term? And what percent was he unable to help. I would like to known this, but unfortunately I don't think this information is available.


The only way we might get this info is if a lot ME/CFS patients on this forum started trying out his treatments. That way, we would begin to get an idea of what sort of success rate his treatment protocol has. This will be a lengthy and to an extent costly exercise, if we are running through all 23 of his top drugs. And there are more drugs beyond that list of 23 (on the archive of Goldstein's website, there is a list of 39 drugs).

I have actually tried 9 out of these 23 drugs, but so far have not found any that provide anything but transient improvements. However, I am not fished yet.

Possibly using the profiling drugs detailed in Goldstein's decision tree (see this earlier post by @JPV) would help speed up the process of finding the right drugs that work for a given ME/CFS patient; but since those profiling drugs are unusual compounds that may be hard to obtain, we will probably just need to use blind trial and error, running through all of Goldstein's drugs one by one until we hit the jackpot, if there is a jackpot waiting for us.

I guess what we need to do is find the cheapest reliable pharmacy, so that this does not become too costly.

 

[Hip]

Going back to this drug tolerance issue: what I am going to be doing shortly is taking high dose inositol and acetyl-L-carnitine (I think Goldstein suggested ALC may also help reverse tolerance), plus some losartan. I just happen to have all three here, and I have taken all of them before without problem. Then after a few days, I will starting taking Wellbutrin again, which was the drug that initially provided dramatic improvements, but those improvements disappeared after two weeks.

 

[heapsreal]

Did goldstein ever prescribe hydrocortisone or testosterone etc??

 

[Gingergrrl]

For me it's not that I believe he cured 98% of his patients (I don't) nor do I believe he used the word "cure" and this is an illness that has no cure or even biomarker in 2015.

For me what stands out is that Dr. Goldstein was so dedicated to this cause in the 80's and 90's and was so ahead of his time. He found so many pieces of the puzzle and researchers today are trying to re-invent the wheel instead of reading his books.

I am not smart enough or sciency enough to interpret his knowledge without significant help from friends. But there are doctors and researchers worldwide who can and it's a shame that they are not.

That is my biggest issue! Even if a small fraction of his books could help current researchers, why are they not studying them and reading them vs. leaving it to the patients to guess around with meds on their own?

 

[zzz]

I think as you have provided much of the material in this thread sourced from Goldstein's books, you perhaps should choose the title.

Thank you, @Hip. I would like very much to stick with the title I proposed above: Dr. Jay Goldstein's Rapid Remission ME/CFS Treatments.

@Sushi, you asked to be tagged when the question of the title was settled.

Though if its purpose is to attract readers, I suggest sober rather than sensationalized phrasing would work best.

What I am trying to do with this title is to represent a summary of Dr. Goldstein's approach as faithfully as possible. I think that the title I selected represents Dr. Goldstein's view better than any of the others. For example, from page 314 of Tuning the Brain:

I no longer seek to improve the patient's condition; I expect to make him or her feel virtually normal, and I often can, except for perhaps 2 to 3 percent of the cases. My job is usually not very difficult. Sometimes patients fell dramatically better in ten seconds. Other times it can take several days or longer.

"Virtually normal" certainly counts as a remission, I think, especially is since whether the remission is total or partial is not specified. A recovery period of ten seconds to several days or longer would certainly be considered rapid by virtually everyone here.

As Dr. Goldstein did not publish large-scale, peer-reviewed formal studies on the effectiveness of his protocols, people may legitimately question his assertions, and that has been done many times in this thread. But I think that he leaves little question as to what he was asserting. And from my own study and experience I happen to agree with his assertions.

The thing is, without precise figures and statistics — and Dr Goldstein did not seem to provide any, at least in the three books you've read — a scattering of case reports recounted in these books does not really provide much of a handle on his success rate.

No, unfortunately, it does not. In the end, it largely comes down to whether or not you believe Dr. Goldstein after reading his books and trying his treatments. There are also anecdotal reports in various places on the Internet, including a number of them in the reviews of his books on Amazon.com. And although I am far from completely recovered, Dr. Goldstein's treatments have been an important part of the tremendous progress I have made over the past year. None of the treatments of his that I started have stopped working for me. (It may help that I take 16 g of inositol daily.)

I was originally going to delay starting this thread until I had made a more complete recovery and had a more powerful position from which to advocate, but I made an isolated post last year, and one thing led to another, and this thread came into being. Overall, I don't think it turned out badly.

You mentioned he treated 20,000 ME/CFS patients in his career; but as a percentage, how many of those achieved near or full long lasting remission? And how many as a percentage achieved significant long lasting improvements? We don't seem to have this info.

No, we don't. Dr. Goldstein describes a success rate of 97% to 98% at various places in Tuning the Brain. But there is little information on what the followup period was. The most direct information is from a quote at the top of page 315 in Tuning the Brain:

Patients who are doing much better than before they first saw me are still encouraged to come in for a tune-up every six to 12 months. Because I already know (I think) the broad outlines of their neurochemical pathways, I can often replace a medication and raise their Karnofsky score from 80 to 90.

The clear implication here is that the improvements typically lasted from one tune-up to the next. Again, I am not presenting this as proof of anything; people will have to decide for themselves.

So he is reporting that 50% of his new patients feel dramatically improved after their first office visit. Well we know that many of his drugs are capable of producing dramatic improvements, at least transiently. But what he is not reporting is how these patients felt the next month, or the next year. Out of the 50%, what percentage were still feeling the dramatic improvements a year later? I am not sure if that info is available.

No exact figures appear to be available. But statements such as the one I quoted above would seem to imply that the great majority of patients were still feeling these improvements, as Dr. Goldstein presents the forward progression of the health of these patients as the norm, and not the exception.

I had dramatic improvements from Wellbutrin, and noticeable though more modest improvements from Lamictal, which are two of his drugs; but in both cases these were transient improvements that disappeared entirely after two weeks.

This is not unusual, and is reflected in the case reports that Dr. Goldstein published in his books. However, I would have a question about the Lamictal. Dr. Goldstein used doses up to 50 mg per day (which is actually a lot less than some other CFS doctors use). Did you go up to the full 50 mg dose before stopping?

So I would like to know, out of Goldstein's patients who received the full exploratory drug testing, what percentage those ended up feeling better, much better, or in near full remission — and maintained these improvements long term? And what percent was he unable to help. I would like to known this, but unfortunately I don't think this information is available.

From the quotes above, Dr. Goldstein said that 97% to 98% of his patients ended up feeling much better or in near or full remission, though once again, we don't have figures for how long these remissions lasted. But the case reports describe cases where remissions were steady or increasing over a course of many years.

Conversely, Dr. Goldstein says that there were 2 or 3 percent of patients that he was not able to help.

The only way we might get this info is if a lot ME/CFS patients on this forum started trying out his treatments. That way, we would begin to get an idea of what sort of success rate his treatment protocol has.

Unfortunately, Dr. Goldstein's protocol, especially in its final stages, is not as mechanistic as it would appear I'll give more details below...

This will be a lengthy and to an extent costly exercise, if we are running through all 23 of his top drugs. And there are more drugs beyond that list of 23 (on the archive of Goldstein's website, there is a list of 39 drugs).

The 23 drugs were the list from Betrayal by the Brain, published in 1996. Dr. Goldstein's protocol had advanced tremendously by the time Tuning the Brain was published in 2003, and at that point, it had more than 140 drugs. A number of Dr. Goldstein's top drugs (including the top two, ketamine and lidocaine) were given by IV administration in a way that few doctors are willing to administer, despite the documented safety of Dr. Goldstein's methods.

Furthermore, drugs were often given in specific combinations, and no one knew as well as Dr. Goldstein which combinations were likely to work, due to his unprecedented knowledge of neuropsychopharmacology. The possible ways of combining 140 drugs is astronomical, and our budgets cannot accommodate that. Those people who are willing to put in the extensive time and energy to study Dr. Goldstein's work will be amply rewarded, based on my own study and experience. But even then, as Dr. Goldstein has said, it may take a lot of trial and error to find the best medications for a particular person.

Hip, you raise a lot of excellent points, for which there are currently insufficient answers. I am trying to provide as many answers as I can from my own experience and understanding, but that is fairly meager. Yet what I have found so far is quite encouraging. Some of your questions on longevity of recoveries would be excellent to ask Dr. Goldstein if it is ever possible to contact him again.

Did goldstein ever prescribe hydrocortisone or testosterone etc??

Neither of these drugs is present in the master list of Goldstein's drugs that appears on pages 459 and following of Tuning the Brain. As for the "etc." part, it's hard to say without being more specific.

 

[Sidereal]

None of the treatments of his that I started have stopped working for me. (It may help that I take 16 g of inositol daily.)

16 g, wow! How long have you been taking it?

 

[Thomas]

Did goldstein ever prescribe hydrocortisone or testosterone etc??

Testosterone Gel appears on the graph on page 458 of TTB -- bottom left box under "Ketamine with down arrow". As for steroids he briefly mentions them in TTB I believe but doesn't use them very often.

we will probably just need to use blind trial and error, running through all of Goldstein's drugs one by one until we hit the jackpot, if there is a jackpot waiting for us.

How long do you plan on trying a drug before you determine whether it's a keeper or not? I usually just go a few days but wondering if I should go a little longer. With so many to test, there isn't much time to spare. Although I believe @zzz mentioned he gives some drugs a few months...

That was one of the questions I actually asked Goldstein when I spoke to him and he said "a few days" so I'm going with that for now (i.e. I took Diamox once daily for 3 days then trashed it), but still curious on what others are doing and if I should give more time.

 

[Sidereal]

For me what stands out is that Dr. Goldstein was so dedicated to this cause in the 80's and 90's and was so ahead of his time. He found so many pieces of the puzzle and researchers today are trying to re-invent the wheel instead of reading his books.

That is my biggest issue! Even if a small fraction of his books could help current researchers, why are they not studying them and reading them vs. leaving it to the patients to guess around with meds on their own?

It's a travesty IMO.

 

[heapsreal]

Testosterone Gel appears on the graph on page 458 of TTB -- bottom left box under "Ketamine with down arrow". As for steroids he briefly mentions them in TTB I believe but doesn't use them very often.

Testosterone can play an important role in increasing dopamine, something I think many of us lack.I'm skeptical of the gels and creams for testosterone . The gold standard appears to be weekly injections of 100mg per week.

dr mariano who is probably the next generation of the likes of goldstein , likes to marry up both hormones and neurotransmitters to help improve energy in many conditions.

 

[Thomas]

It's a travesty IMO.

Especially since Cheney and Peterson are mentioned as being on the "Advisory Board" (whatever that means) in the beginning of Limbic Hypothesis -- by the time BBTB was published though just a short while after, Dr. Goldstein has already stopped naming famous CFS doctors as being in agreement with him, and refers to them simply as "CFS doctors" who take no interest in his work. Shame.

As an aside, there is a recent picture of Cheney that I saw where he is sitting in his office. His desk is clean except for a very thick book or textbook that had the title of something like "Neurobiology". Ironic.