BETRAYAL by the BRAIN: Jay Goldstein, MD - Has anyone read???

[zzz]

I traveled to see Dr. Madill in N. California who is very read up on the Brain etc... Says Goldstein had good ideas but his practices were downright dangerous....

Although Dr. Goldstein claimed that the drugs he used were quite benign, the potential side effects of many of them are indeed quite nasty. And yet Goldstein claims that he never had a serious adverse drug reaction among any of his patients. Having read Betrayal of the Brain and being well into Tuning the Brain, I tend to believe him. He just knew how to use these drugs in a way that other people don't. It's also clear that he tended to overestimate the intelligence of other doctors from various stories he tells. In the case of his protocol, I wouldn't trust the average doctor to be able to use it safely.

I've seen in this thread and elsewhere that people have said that he addressed only part of the picture. Yet at the beginning of Tuning the Brain, which was written shortly before his retirement, he claimed he had reached the point where he could make 97% to 98% of his patients completely asymptomatic, usually in a matter of days or less. In the case of some people who were doing some excellent work with IBS, he explained how both he and they could be getting good results using very different methods. He said that they were using a bottom up approach, while he was using a top down approach. I think that's true in general - he addresses the same issues that are discussed throughout this forum, but just approaches them all from the brain. If he got up to a 97% or 98% success rate, he had to be fixing methylation issues (which he briefly mentions, and to which he devotes a color plate), since they're so common in ME/CFS. The same also goes for immune system issues, endocrine issues, etc. As for infections, he acknowledged the need for antibiotics for acute infections; for herpes infections, he used Zantac,which usually resolved them in a day or two. (Yes, Zantac - for details, see this post and following.) Fixing the immune system addressed many low-grade infections. So I really do think he addressed the whole picture of ME/CFS.

For @Jacque or anyone else interested in subutex, the other concern I have and that would be for any opiate actually is that it decreases glutathione and ATP according to studies I've seen on human and mice models. Here's one:
http://www.ncbi.nlm.nih.gov/pubmed/20732019
So definitely not good for people with CFS ME in those important areas.
Unfortunate as I felt so good on it and slept better but have now stopped taking it for the above mentioned reasons.
Sorry to go off sideways on this thread...

I don't think it's really sideways - Dr. Goldstein's philosophy seemed to be to do what worked. He noted that different patients often had the exact opposite effect to the same medication. Some of these differences he could explain; some of them he couldn't. If your ATP were being reduced substantially by this drug, I can't see how you would be feeling good. A drug that has the combination of making you feel good and also sleep better is very hard to find. If it's not decreasing your energy or giving you any other significant side effects, I would see no reason to stop it.

 

[helen1]

I'm very tempted to give it another try in an even tinier dose to see if similar things happen. I'd be sorry to give it up if it wasn't the cause of my crash.

 

[Gingergrrl]

@Sushi Thank you for linking this old thread to a current one and I just read the entire thing. I just ordered Dr Goldstein's book "Betrayal of the brain" and the companion guide yesterday on Amazon. They have used copies for really cheap prices.

I live close where I could have seen Dr. Goldstein if he were not retired! I know that his books will be way over my head scientifically but I am blessed to have a knowledgeable friend who is going to help me understand them. I am trying to learn as much as I can from as many different possible angles.

From this thread it sounds like he did a lot to treat chronic pain whereas my main issues are autonomic but hoping it can still help me.

 

[knackers323]

Anyone tried the nitroglycerin or know why he used the sublingual and not the tablets?

Or if the tablets could be used in same way?

 

[Gingergrrl]

@knackers323 I don't know the answer re: the nitroglycerin but hope to find out in the book.

My cardiologist actually prescribed me a Nitro spray at my last appt b/c he suspected I had micro vascular angina but in my case due to low BP and blood volume. I was having angina type episodes but I have no traditional heart problems after five days in the hospital for tests (it looks like I have all autonomic, viral & CFS stuff.)

The Nitro scares me but if I have a really bad episode in the future I will try it. So far with Atenolol and Midodrine, I am not having the bad episodes and only one minor one on the day I accidentally missed taking Atenolol.

But I am very curious about the Nitro and how Dr. Goldstein used it.

 

[zzz]

From this thread it sounds like he did a lot to treat chronic pain whereas my main issues are autonomic but hoping it can still help me.

I think that a large reason for that is that chronic pain was a big issue for many of the other posters on this thread, and so that's why they focused on it. For me, I've seen results in a wide variety of areas from his methods.

Anyone tried the nitroglycerin or know why he used the sublingual and not the tablets?

Or if the tablets could be used in same way?

I assume that he used the sublingual simply because it was faster. He liked to get his results within a few minutes, or even seconds, if possible. The reason for this is that he might have to try dozens of medications on a given patient before he hit the right one or the right combination, and since most of his patients were from out of town, he liked to clear up their symptoms within one or two office visits.

The tablets would work just as well, though. From my own experience, I used Isordil (which is essentially a longer lasting version of nitroglycerin) in tablet form when my first episode of ME/CFS was at its worst. This is the treatment I refer to in the first paragraph of this post. Just as in Dr. Goldstein's books, all my ME/CFS symptoms slowly starting disappearing within minutes of taking a single tablet. As Dr. Goldstein hadn't even written most of his books on CFS at the time, this came as a complete surprise.

This does of Isordil (and possibly two one-quarter tablet doses on each of the following two days) resulted in the complete remission of all ME/CFS symptoms over the next eight years, with the exception of two relapses (each successively weaker) totaling five months over the next three years. Furthermore, even though I had my final relapse 16 years ago, it has never been as bad as that first episode on a continuing basis. Specifically, the cognitive dysfunction and memory problems have been much milder.

As you may have gathered, the Isordil never worked in the same way again for me. It would occasionally relieve symptoms, especially when they were at their worst, but it had lost most of its power. This is not uncommon for many of Dr. Goldstein's treatments, and especially for nitroglycerin and its relatives. When Dr. Goldstein was practicing, he would just find another drug when this happened. Sometimes this was easy; sometimes it wasn't.

I should also emphasize that like most of his treatments, nitroglycerin worked only for a minority of his patients. For the rest, it just gave them a big headache. (The headache came even when it worked.) As Dr. Goldstein pointed out, people with a history of migraines should not use nitroglycerin for this purpose.

 

[knackers323]

@zzz wow what a story. Any idea what it actually did that it gave you remission for that long?

Also anyone know where to buy isordil or nitroglycerin without prescription?

 

[steve b]

I saw Dr. Goldstein in 1998-1999. He was the first doctor to diagnose CFS. Goldstein is brilliant, used his knowledge of pharmaceuticals to treat CFS and fibromyalgia. I experienced a six week remission after taking nimodipine in his office. A number of other drugs reduced symptoms but over time I'd develop a tolerance.

I now know my CFS is caused by a severe mold sensitivity. I strongly suggest taking the visual contrast sensitivity test (VCS) at survivingmold dot com. Also, read this attachment. In this study the majority of CFS patients tested positive for mold. I'm convinced that more than half the people reading this have the same mold sensitivity illness, what Dr. Ritchie Shoemaker calls chronic inflammatory response syndrome (CIRS), or biotoxin illness.

 

[Jacque]

I SO wish I could find a doc who would experiment with some of this brain therapy... Has anyone found one yet? I also have the Mold issue you spoke of Steve... I flew to see Dr. Shoemaker and went thru that whole fun mess too... Moved out of my moldy apt...but symptoms persisted. I live on the central coast of Calif... GOOD LUCK getting away from mold around here!!! Are you on the Cholestyramine Steve? If found Dr. Shoemaker to be quite an arrogant jerk! Told me I did NOT have Lyme only Mold illness... even tho my tests are positive... also told another girlfriend she didn't have Lyme...and now guess what he is treating her for?? yep... Lyme!

 

[Insomniac]

I revived this thread because I just read the following article about the latest findings in CFS, and it mentioned that Dr Goldstein has died. I got a bit of a shock. - Is it true or is it a mistake? I hope it is a mistake. Does anyone know?

http://www.cfstreatmentguide.com/blog/the-elephant-in-the-room-brain-studies-politics-and-mecfs

Rachel

 

[Gingergrrl]

@redrachel76 I just bought his books and plan to read them when I am feeling up to it. I hope he did not pass away but I honestly don't know. Let me know if you find out.

ETA: I just did a Google search and according to Wikipedia and some other websites, he is still alive. But who knows for sure?

 

[Insomniac]

I found out that Dr. Goldstein is alive and it is possible to send him a letter through the National CFIDS Foundation. So I have done so. After I sent the letter I got a message from the head of it saying Dr. Goldstein is unwell.

I have bought a copy of his book from Amazon to see if I can pick up some tips. I doubt I will get an answer to my letter but I hope he makes a recovery from whatever he has.

I remember him as a good man and I wish other doctors were like him.

 

[zzz]

Thanks for the update, @redrachel76! I know that in Tuning the Brain, which was published right before his retirement, Dr. Goldstein details a severe neck injury he experienced while playing with his son. He investigated getting surgery done on it, but he eventually decided not to, and he was able to get the pain to subside substantially. But neck injuries of the type he described don't heal by themselves, and I have a feeling that this was connected to his sudden and unexpected retirement. In Tuning the Brain, he said that his next book would be Brain Static: Cases in Neurosomatic Medicine, but that book never appeared. Last year, in a post on ProHealth, his wife stated that she and their son were standing by Dr. Goldstein "in his hour of need." He is currently 71 years old, but it sounds most likely that he has been disabled by his neck condition.

I never met Dr. Goldstein, but just from reading his books, I could tell that he was one of the best. He gave everything to trying to improve the lives of his patients, and it is very sad indeed to hear that he is spending his later years in ill health.

 

[undcvr]

I know that vasodilators do work, high dose vinpocetine, hawthorn, celery extract and anything that boosts nitric oxide production. Nowadays we know that anything that is an ACE inhibitor or an ARB cuts down on general inflammation.
It isn't the cure though.

 

[Sherlock]

his sudden and unexpected retirement.

FWIW:

Update October 21, 2004: Dr. Jay Goldstein retired from practice about a year ago, mainly due to the hassle factor of being continually sued. Not because he did anything wrong, but because he took on the inherent risk of treating people who may never get better.

It's a shame that people are so base in nature that they would blame him if he didn't cure their incurable disease. Unfortunately, the gratitude of those he did help couldn't outweight the emotional and financial toll taken on him by those he couldn't help.

http://www.pulsemed.org/cfspharm.htm

 

[zzz]

I know that vasodilators do work, high dose vinpocetine, hawthorn, celery extract and anything that boosts nitric oxide production. Nowadays we know that anything that is an ACE inhibitor or an ARB cuts down on general inflammation.
It isn't the cure though.

Although Dr. Goldstein used vasodilators among his many (140+) medications, he did not use them for their vasodilating effects. In fact, when these medications worked immediately, they had a vasoconstricting effect in the brain. Please see this thread for further details.

Dr. Goldstein's work was very complex, and far ahead of his time. The referenced thread will give a basic outline of some of his theories. However, to fully understand them, it is necessary to read and understand his books Betrayal by the Brain and Tuning the Brain. All the criticisms I have seen of Dr. Goldstein's theories reflect a lack of understanding of these theories, which can be remedied by reading his books.

For the record, Dr. Goldstein never claimed to cure anyone of ME/CFS; the most he ever said was that he had made large numbers of patients asymptomatic, or nearly so.

 

[Thomas]

This is just a shot in the dark but does anyone know of any doctors in Canada that are familiar with Dr. Goldstein's work and/or who practice a similar treatment protocol?

 

[Gingergrrl]

This is just a shot in the dark but does anyone know of any doctors in Canada that are familiar with Dr. Goldstein's work and/or who practice a similar treatment protocol?

Unfortunately, I don't know of any current doctors who are trying to replicate Dr. Goldstein's findings or using a similar protocol. But I could be wrong about this and tagging @zzz just in case!

 

[Dufresne]

This is just a shot in the dark but does anyone know of any doctors in Canada that are familiar with Dr. Goldstein's work and/or who practice a similar treatment protocol?

Please let me know if you get a lead on this. I was somewhat familiar with his work, as I once mentioned to you, but I'd never come across this "receptor profiling" guide.

I can tell you I fit neatly in that upper-right box of treatments. Two of the drugs in that box have relieved my PEM, and what is this disease if not that symptom? Another gave me more libido and zest for life than I've ever had. I think he was onto something.

Anybody know where I might score some ketamine?

 

[Thomas]

Please let me know if you get a lead on this. I was somewhat familiar with his work, as I once mentioned to you, but I'd never come across this "receptor profiling" guide.

I can tell you I fit neatly in that upper-right box of treatments. Two of the drugs in that box have relieved my PEM, and what is this disease if not that symptom? Another gave me more libido and zest for life than I've ever had. I think he was onto something.

Anybody know where I might score some ketamine?

Since we last chatted I've managed to complete two of Goldstein's books and look much deeper into his brilliant understanding of neurosomatic illnesses and receptor profiling. I've also tried over 10 of the medications (no miracles yet) and have more on the way. I've managed to find a few good and reliable online pharmacies that ship to our country. So far I have used brandmedicines.com only and they have been great.

As for Ketamine, since it's a street drug and classified as a psychadelic you're not gonna find it online (or maybe you will, I don't know I haven't looked). You can find lidocaine online but not IV (which is Goldstein's 2nd favourite treatment after Ketamine -- or combined with it.). In any event, there is a local pain clinic in Toronto that provides IV Ketamine and/or Lidocaine for intractable neuropathic pain and I was able to get my family doc to refer me there for hopeful treatment based on a "pain" or fibro diagnosis -- even though my ME is mostly neuroinflmmatory and PENE hell. I haven't been able to find any doctor who will duplicate his work -- I don't think there's a docotor in North America who would undertake his protocol for patients. He was one of a kind. So, just like everything else with this illness, we are left to fend for ourselves.

I'm sure there are similar clinics in your city somewhere. If you do find a practioner that will administer ketamine and/or lidocaine to you via IV keep this in mind: Goldstein says these MUST be administered slowly over 2 but preferrably 3 hours as to minimize any adverse reaction. If it's done too quickly, say in 45 minutes or an hour, one may quickly develop a tolerance, the meds won't work, and they will not work ever again. I trust his opinion as he has given thousands of both IV's throughout his career and understands their neuropharmacology better than anyone else.

Oh also, he found IV Ascorbate to be a good treatment as well and I hope to try this as well at some pint in the next few weeks.