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

[Hip]

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.

And I am very pleased that you did start expounding upon Dr Goldstein's methods, because I have learnt a lot from this thread.

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.

That remark by Dr Goldstein sounds more like exaggerated sales talk rather than sober scientific statement.

Let's think about this. Dr Goldstein appears to be claiming here that he can make all but 2% or 3% of ME/CFS patients almost fully well. Now assuming this is a long term improvement he achieved (because if it were for just a few days or weeks, it would not be worth much), then Goldstein is saying he has devised the techniques to place nearly every ME/CFS patient into near full remission on a long term basis.

Now there are 17 million ME/CFS patients in the world, their lives in misery, costing billions to the economy and to insurance companies, and yet Goldstein claims his methods have the ability to cure nearly all of those patients, just using ordinary and inexpensive drugs. And he claims that he can cure these patients in a timeframe of days.

Yet for some reason, nobody has paid any attention to his techniques, and so the 17 million remain uncured, their lives wasted, and the economy and insurance industry continue losing billions.

It all sounds utterly implausible.

So if it is utterly implausible, the only alternative is to presume that Goldstein is indulging in gross exaggeration.


I am not denying that sometimes the drugs he prescribed may have led to profound improvements in health, and to near remission. Clearly they did with you (although did Goldstein ever have any patients that were cured with just one dose of a drug?). And I am not denying that Goldstein may have developed methods to more quickly identify the drugs that will help each individual ME/CFS patient. And I am even prepared to accept the possibility that Goldstein may have had 10 times more success in treating patients that other ME/CFS doctors, as a result of his tireless dedication and intellectual engagement.

However, to claim as Goldstein appears to do in Tuning the Brain, that his techniques can cure nearly all ME/CFS patients, but somehow these techniques were never taken up by the rest of the world, seems utterly unlikely.

And consider this: the drugs that Goldstein used are very commonly prescribed drugs. If these drugs were regularly putting ME/CFS patients into remission, we would hear reports about this from all over the place.

But I am not throwing the baby out with the bathwater here. I do think there may be something of significant value in Goldstein's methods. I just want to try to put the efficacy of these methods put into proper perspective.

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?

I started with a 12.5 mg dose of Lamictal, and this worked fine initially, but the drug's effects disappeared after a few weeks. And even when I stopped taking the drug for a month, and then restarted, it did not help. I will at some point try to regain those effects by using a high dose, up to 50 mg. However, there were some not so nice side effects as well as the benefits, so overall on balance, the utility of this drug was only moderate.

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.

I think it depends on the type of drug. If the drug acts directly on brain receptors and brain chemistry, like antidepressants, anticonvulsants, anti-psychotics, etc, then a few days to a few weeks should be enough time to gauge whether it is going to work for you. Most of Goldstein's drugs seem to be those that act directly on the brain.

In Goldstein's top 23 drug list, he actually states the time it takes for a drug to kick in, and this is anything from a few minutes (for very rapid acting drugs like eyedrops and sublinguals), to several weeks. One or two drugs he lists as taking as long as 8 weeks.

But obviously if the drug is something like an antiviral or an immunomodulator, then often it requires many months before you begin to notice benefits. But I don't think Goldstein used these.

 

[JPV]

However, to claim as Goldstein appears to do in Tuning the Brain, that his techniques can cure nearly all ME/CFS patients, but somehow these techniques were never taken up by the rest of the world, seems utterly unlikely.

And he seems to have been persecuted by the medical establishment for his activities. I'm assuming this has deterred others from following in his footsteps.

I sometimes get the impression that someone doesn't want this disease to be properly investigated.

 

[zzz]

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 feel dramatically better in ten seconds. Other times it can take several days or longer.

That remark by Dr Goldstein sounds more like exaggerated sales talk rather than sober scientific statement.

Well, it's certainly not a humble statement, that's for sure. Dr. Goldstein was not humble about his work, as a simple reading of his books (especially the first section of Tuning the Brain) will show. Everyone describes him as a very kind, compassionate, and caring doctor. But his lack of humility is quite apparent in his own accounts, and this seems to be one of the things that cost him dearly in the community of CFS professionals.

However, if one is to be scientific about this, the accuracy of the quote cannot be determined simply by its content. So we look further...

Let's think about this. Dr Goldstein appears to be claiming here that he can make all but 2% or 3% of ME/CFS patients almost fully well. Now assuming this is a long term improvement he achieved (because if it were for just a few days or weeks, it would not be worth much), then Goldstein is saying he has devised the techniques to place nearly every ME/CFS patient into near full remission on a long term basis.

Yes, that appears to be exactly what he is saying, and that is how I've always interpreted this and similar quotes.

Now there are 17 million ME/CFS patients in the world, their lives in misery, costing billions to the economy and to insurance companies, and yet Goldstein claims his methods have the ability to cure nearly all of those patients, just using ordinary and inexpensive drugs. And he claims that he can cure these patients in a timeframe of days.

To be precise, he never uses the word "cure"; instead, he tends to use the phrase "asymptomatic, or nearly so", or something like it. Also, in the quote above, he says "feel dramatically better", and refers to a period of several days or longer. The "feel dramatically better" state is not his endpoint of treatment, as one can feel dramatically better long before one becomes anywhere near asymptomatic. From reading his books, and specifically his case reports, it is clear (and he states this in places) that he is talking about a typical period of anywhere from a day or two to months or longer to make a patient asymptomatic, or nearly so. The ten-second recoveries do indeed occur (some of them are documented in a section entitled "One Second Epiphanies" in Tuning the Brain), but they represent a distinct minority of his cases.

Here is a quote from page 32 of Tuning the Brain that gives a bit more insight into Dr. Goldstein's treatment schedule:

The bulk of my practice is from out of town. I allot four days to treat a new patient, although only about 75 percent will feel normal by the end of the fourth day. I follow them by telephone with sample medications. Few can afford to stay into the next week. An occasional patient demands (about once a year) a refund if he or she is not well or does not remain well. I can scarcely refuse, because reporting me to the medical board will always be worse than giving a refund.

Back to your post...

Yet for some reason, nobody has paid any attention to his techniques, and so the 17 million remain uncured, their lives wasted, and the economy and insurance industry continue losing billions.

It all sounds utterly implausible.

Does it, really? Not to me.

@Hip, you live in the UK, which is generally regarded as a highly civilized country. What percentage of doctors there use state of the art knowledge to treat CFS? I'm just counting basic treatments here, not something you'd have to go to some highly specialized center to get.

So how many doctors use this available knowledge? Is it 90%? 70%? 50% Do even 10% of the doctors in the UK use state of the art knowledge to treat CFS?

I don't think so. Rounded off to the nearest percentage point, I'm afraid we would have to say that the figure is 0%. Would you disagree?

Now one could legitimately make the point that standard clinical practice typically does not use state of the art knowledge. In fact, it has been shown that it typically takes 17 years(!) for state of the art knowledge to funnel down to clinical practice. So this means that we could expect state of the art knowledge from 1998 to be filtering down to clinical practice now.

So let me be more fair here: What percentage of doctors in the UK are using knowledge about ME/CFS that was state of the art in 1998 to treat ME/CFS today?

Unfortunately, I still get the same 0% figure. Again, do you disagree?

Consider just one item that was state of the art in 1998. Dr. Lerner had just completed and published his successful trial of IV ganciclovir on ME/CFS patients.

How many doctors in the UK use IV ganciclovir, or its more commonly used successor, Valcyte, to treat ME/CFS? Please correct me if I am wrong, but I believe that the number is approximately zero - despite the fact that this is one of the most successful treatments ever found for ME/CFS.

Is it true that ME/CFS is at least treated with benign neglect in the UK? Or is the almost universal treatment for ME/CFS the Wessely School version of CBT, along with GET - both of which are known to be harmful to patients, and have been known to be so for decades?

That's the UK. The rest of Europe is even worse. In most European countries, ME/CFS is not even recognized to exist.

So here we have the example of many Western countries that are ignoring all medical knowledge ever gained about ME/CFS, much to their detriment. Aside from the professional CFS specialists, things in the US may be slightly better, but not much.

Even though there are many, many treatments that are helpful in dealing with ME/CFS - some as basic as "pacing" - the percentage of doctors in the world using these methods to treat patients with ME/CFS is approximately 0%. And these doctors are greatly outnumbered by those who either have no idea of what to do with ME/CFS (if they have even heard of it), or who try to treat it with inappropriate treatments such as exercise, or treat it as a psychiatric condition.

Considering that productive methods for treating ME/CFS are in use by almost no doctors worldwide, why is it surprising that Dr. Goldstein's methods are not being used? In a world where most doctors don't even acknowledge the legitimacy of ME/CFS, it seems to me that the lack of adoption of Dr. Goldstein's methods is quite understandable.

Dr. Goldstein also addresses this matter very directly in both the Introduction to Betrayal by the Brain and the Preface to Tuning the Brain, as he was questioned about the lack of adoption of his methods very frequently, typically by patients who had been helped dramatically by them. Goldstein's responses make a lot of sense to me, especially knowing what I do about the medical field. Here's what he said in 2003 about CFS research in the UK:

I must say that the British CFS researchers (with very few exceptions), even more than their counterparts in the United States, don’t know they don’t know and wouldn’t care if they did. They seem to slavishly regard cognitive-behavioral therapy as the Holy Grail of CFS. Publications around the fringes of neurobiology are infrequent in number and trivial in their implications.

Any disagreement here?

I must stress that I have nothing against the UK; there's not a country in the world that deals with ME/CFS reasonably.

So if it is utterly implausible, the only alternative is to presume that Goldstein is indulging in gross exaggeration.

As I do not agree with your premise for the reasons I have stated, I cannot agree that your conclusion follows.

And consider this: the drugs that Goldstein used are very commonly prescribed drugs. If these drugs were regularly putting ME/CFS patients into remission, we would hear reports about this from all over the place.

Why do you think this is true? Dr. Sarah Myhill is one of the strongest proponents of magnesium injections, which have helped many thousands of patients of many different doctors. Yet not only did other doctors in the UK pay no attention to her success with magnesium, but it was her description of the benefits of magnesium therapy (in various forms) on her Web site that was one of the reasons cited for the attempt by many of these doctors to get her medical license revoked. It was charged that she was misleading patients, because, it was claimed, there was absolutely no evidence that magnesium was of any benefit at all in treating ME/CFS.

As Dr. Goldstein himself stresses, one has to take into account the "Not Invented Here" syndrome. It doesn't matter if a treatment works, especially for a disease that almost no one influential cares about. In the general case, what matters is whether a treatment is blessed by the appropriate institution. And among researchers, what matters is whether the treatment fits the researcher's protocol. Have you noticed that the major CFS researchers all tend to go off in their own separate directions, paying essentially no attention to what the others are doing?

I started with a 12.5 mg dose of Lamictal, and this worked fine initially, but the drug's effects disappeared after a few weeks. And even when I stopped taking the drug for a month, and then restarted, it did not help. I will at some point try to regain those effects by using a high dose, up to 50 mg. However, there were some not so nice side effects as well as the benefits, so overall on balance, the utility of this drug was only moderate.

Yes, Lamictal is a very tricky drug to administer, and it can have some truly nasty side effects. Some of these side effects may require stopping the drug immediately, while on the other hand, stopping more than a tiny dose of Lamictal immediately without titrating it down can itself have disastrous consequences. So I certainly understand your reluctance to titrate up on this drug; it's not a drug I would use. On the other hand, I don't think it's fair to judge it if you haven't used it at the doses that Dr. Goldstein recommends.

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?

I've been taking it for about a year; I take 8 g 2x/day. I started taking it shortly before I rediscovered Goldstein's treatments.

Testosterone Gel appears on the graph on page 458 of TTB -- bottom left box under "Ketamine with down arrow".

Fascinating! This is the first time I've found a treatment listed in the chart that wasn't contained in the list starting on page 459.

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.

Dr. Goldstein did some of this as well. He was an especially big fan of oxytocin.

 

[geraldt52]

That remark by Dr Goldstein sounds more like exaggerated sales talk rather than sober scientific statement...

Yet for some reason, nobody has paid any attention to his techniques, and so the 17 million remain uncured, their lives wasted, and the economy and insurance industry continue losing billions.

It all sounds utterly implausible...

Indeed. When I hear numbers like 98%, I begin to dismiss everything that comes after that as not believable. Goldstein may well have been brilliant, but I wonder did he actually ever follow up on any of his patients, to confirm that the reason they never came back was that they were in remission?

My doctor was once hooked up with Goldstein. I declined, but my wife did experiment with Goldstein's protocol. The results were fleeting, and often bizarre and a bit scary. I have to say it all seems too much like pharmaceutical roulette for me, but everyone does what they think they have to do to keep going.

 

[Hip]

Well, it's certainly not a humble statement, that's for sure. Dr. Goldstein was not humble about his work, as a simple reading of his books (especially the first section of Tuning the Brain) will show. Everyone describes him as a very kind, compassionate, and caring doctor. But his lack of humility is quite apparent in his own accounts, and this seems to be one of the things that cost him dearly in the community of CFS professionals.

That sounds like a classic case of the genius personality: often kind and compassionate, yet at the same time, very self-assured and sometimes arrogant as a result of their own intellectual brilliance, often feeling frustrated that their peers are not able to attain the same heights of insight.

By the same token, genius may become so self-confident that they believe their intellectual brilliance is capable of fixing any problem. From what you are saying, this seems to be the stance that Dr Goldstein has adopted in his books, more so in his later book it seems, Tuning the Brain.

So we should recognize that Dr Goldstein's work may be touched by genius, and therefore well worth trying to understand. It may even lead to new insights into the nature of ME/CFS. Certainly what Goldstein wrote about receptor desensitization in G-protein coupled receptors has opened my eyes.

But we should also be aware that the self-confidence of creative genius may lead to an exaggerated sense of their abilities.

So how many doctors use this available knowledge? Is it 90%? 70%? 50% Do even 10% of the doctors in the UK use state of the art knowledge to treat CFS?

The UK is not a good example in terms of dissemination of leading-edge ME/CFS treatments, (a) because of the bad influence the Wessely school has had on medical opinion in the UK, and (b) because with a monolithic socialized medicine system such as the NHS, there is no easy way to overcome such opinion. Free market forces don't really exist in the NHS, and doctors have to tow the line, so there's not much scope for individual doctors to experiment and develop their own treatments, and then have a path beaten to their door by grateful patients.

However, I don't have that much knowledge about how the NHS operates, so these are just my speculations as to why the UK is currently so slow and backwards when it comes to adopting helpful ME/CFS treatments.

However, that does not explain why, if Goldstein's methods were up to 98% successful in putting patients into near remission, they were not widely adopted in the US, which does not suffer from the problems present in the UK. Even just from the financial perspective, any doctor in the US who adopted Goldstein's methods and was able to get this 98% success rate would have had an enormously long path beaten to their door by fee paying patients. They would become very rich, very quickly.

But nothing like this has happened, so this 98% success rate just does not ring true in my view.

Goldstein's responses make a lot of sense to me, especially knowing what I do about the medical field. Here's what he said in 2003 about CFS research in the UK:
Dr. Jay Goldstein said:

I must say that the British CFS researchers (with very few exceptions), even more than their counterparts in the United States, don’t know they don’t know and wouldn’t care if they did. They seem to slavishly regard cognitive-behavioral therapy as the Holy Grail of CFS. Publications around the fringes of neurobiology are infrequent in number and trivial in their implications.

Any disagreement here?

No disagreement at all with that, although if you had rolled the clock back to the 1980s, the UK were doing very well in terms of ME research, having made the connection between enteroviruses and ME, and clearly viewing ME as a biological disease. Had the Wessely crowd not come along and diverted interest away from this biological perspective of ME, we may well have had a good antiviral treatment for ME/CFS developed by now.



Anyway, perhaps we shouldn't belabor this issue of success rates too much. I think we all here to see what we can learn from Dr Goldstein's work, and see if we can improve our health from it.

 

[garcia]

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.

Testosterone gel is pretty much the only thing which will calm down my overactive NMDA receptors enough for me to be able to go out. I think the dopamine hit is possibly the primary mechanism.

The Gel is actually far superior to other forms, as you get DHT conversion with the gel (the majority of the benefits of testosterone seem to be from DHT rather than testosterone itself). I took oral testosterone and got absolutely no benefits.

Weekly injection is the old fashioned / orthodox way of administering Test, but most of the cutting-edge hormone docs are against it as testosterone follows a daily 24-hour cycle, not a weekly cycle!

 

[Thomas]

@Hip I noticed some prior posts on your description and success with Amisulpride low dose. I had a really weird reaction on one 12.5mg dose of Seroquel, another (but structurally different) atypical antipsychotic. It gave me loud popping sounds in my brain as I was trying to fall asleep -- needless to say I never took it again. But the benefits you describe from Amisulpride are exactly what I need. What time of day or evening do you take your dose?

Also, I noticed that this drug never appears in the Goldstein literature -- I'm assuming because it was yet to be released at the time of his writing?

I'm wondering if it would synergize with the Wellbutrin I take, which by the way, I am looking at discontinuing after being on it several months as I haven't noticed any substantial reduction in any of my symptoms. However, like your experience with the drug, it did work well for me for about 3 weeks back in 2012 -- but this was when I was much more functional in general.

 

[Hip]

@Thomas
I take amisulpride 12.5 mg once daily in the morning, but I it probably does not matter too much when you take it. This drug I have used daily for a few years now, and there has been no diminution of its effects, nor tolerance build-up. Which is great, because it does offer me a number of benefits for various symptoms (I started a thread on it here).

Amisulpride has a European license, but is not currently licensed in the US, although of course is easy enough to obtain via online pharmacies. That may be why Dr Goldstein never used it.

Very low dose amisulpride might almost be considered a different drug to high dose amisulpride (high dose is up 1,200 mg). This is because whereas high dose amisulpride antagonizes dopamine D2 and D3 receptors, very low dose amisulpride does the reverse and actually agonizes these same receptors (by an autoreceptor mechanism). This dopamine receptor agonism I believe produces its antidepressant effect.

I was continuing to take amisulpride 12.5 mg daily while I tried Wellbutrin, and they seemed fine together.

I also tried risperidone, another atypical antipsychotic, and one prescribed by Goldstein, but I did not feel good on that. Whereas amisulpride helps reduce my anhedonia, I found risperidone worsened it. Though I have read one report of someone obtaining remission from risperidone, so that was why I tried it. But unfortunately I did not hit the Goldstein remission jackpot with risperidone.

 

[Thomas]

Anyone tried the cholinesterase inhibitors like Aricept or Exelon? On page 200 of TTB Goldstein writes they can be helpful in a handful of patients, especially in cognitive function, but that they can also be neurotoxic. Think it's worth the risk?

 

[Misfit Toy]

But we should also be aware that the self-confidence of creative genius may lead to an exaggerated sense of their abilities.

My thoughts exactly.

 

[mariovitali]

Maybe this is a job for @mariovitali and his search program.

Interestingly, the software did find an association between Inositol and the Adrenergic Receptor. Notice also how Phosphatidylcholine is also frequently associated with the Adrenergic Receptor :

trpv = transient receptor potential vanilloid 1

 

[JES]

Which speaks to something very important, and that is, fundamental therapy does not instantaneously result in improvement. As a matter of fact, anything that would improve you within a matter of minutes, hours, or days is, in fact, not therapy at all. It is palliation—symptom suppression—which in fact may not be helping you at all.

I found this quote from some old Dr Cheney interview a bit related to this thread. My experience with some instant remission type treatments is a bit similar. I can "instantly" treat some of my CFS symptoms, for example a constant anxiety, by certain supplements. This does nothing for the root cause of my problem, it only makes life a bit more manageable.

In fact, some of the instant treatment like things I've tried I find potentially dangerous, because usually they result into more energy, followed by more activity, only to lead into a crash later. There is a reason for the sickness behaviour in CFS, and that is for the body to protect us from overexertion while sick. Trying to override this mechanism without treating the root cause could have the same consequence as some sudden exercise therapy, which is generally viewed detrimental in this disease.

 

[perrier]

Look folks, let's get logical. Fluge and melle saw a result with rituximab, as we know. The whole world heard about it. And this success is still very unformed.

If dr Goldstein had really come up with something! the whole world would have heard. I don't deny he had some success, transient success, partial success, but if he really put folks into remission the news would spread like wildfire because this illness is living hell. I too read Goldstein and called his office,but we didn't go after doing more investigating.

 

[Dufresne]

Look folks, let's get logical. Fluge and melle saw a result with rituximab, as we know. The whole world heard about it. And this success is still very unformed.

If dr Goldstein had really come up with something! the whole world would have heard. I don't deny he had some success, transient success, partial success, but if he really put folks into remission the news would spread like wildfire because this illness is living hell. I too read Goldstein and called his office,but we didn't go after doing more investigating.

I think the study you cite received wide coverage because of the way it was presented. Goldstein's work unfortunately comes across as a bit zany and doesn't lend itself to scientific analysis. He was also a one-man show and this doesn't fill the ME/CFS world with confidence. However there are far more positive reports from significantly improved, and even cured, patients than clinicians even as good as Dr Cheney can boast. I know of people who did extremely well with Goldstein.

 

[perrier]

This is wonderful,really wonderful. Because this illness is hell. But when there is real improvement the news travels like wildfire, I would expect.

 

[MeSci]

The ARB drug losartan reduces TGF-β activation in the brain, so possibly this might be helpful in combating this too rapid desensitization. 1 Possibly losartan might help reverse the drug tolerance problem too.

Caution is needed when taking ARBs if one has a tendency to low blood sodium. I daren't take anything that counters or reduces aldosterone.

 

[cph13]

@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

 

[cph13]

I realuze this is an old post. Were u ever able to find a source for HYDERGINE. If so, have u tried it n what r your experiences. Any info would be greatly appreciated. I'm in the U.S. we can't get it here even with a script. Thanking u in advance for ANY INFIRMATION u can provide. Be well, C

 

[Thomas]

I realuze this is an old post. Were u ever able to find a source for HYDERGINE. If so, have u tried it n what r your experiences. Any info would be greatly appreciated. I'm in the U.S. we can't get it here even with a script. Thanking u in advance for ANY INFIRMATION u can provide. Be well, C

Mimaki Family Pharmacy has it. I took it for a few days and didn't see any benefit so I stopped. Still have some which I'll try again soon.

 

[phillybadboy]

any heard of dr goldsteins adenosine nasal spray, adenosine mouth swirls, or other adenosine treatments?