@zzz, that is an extraordinary story! I read your above-quoted post, and then started reading several more of you forum posts (some of which I have quoted below) on your ME/CFS remission for 8 years after taking just one isosorbide dinitrate tablet. I am amazed. It seems that there could be much to learn here; your remission could shed a lot of light on the nature of ME/CFS.
I think so too. Since the onset of this illness can be very sudden (you can see my story
here), wouldn't it be possible that a remission could be very sudden as well? Dr. Goldstein seems to have demonstrated this thousands of times.
I mentioned in that story that my last relapse 16 years ago took place in a period of about two seconds. In that time, I went from feeling completely healthy to feeling very sick all throughout my body. There's only one thing that travels that fast through the body, and that's nerve impulses. The basis of Dr. Goldstein's theory was that one or more neural networks in the brain were not working properly in this illness, and that these neural networks could be reset with the correct medications.
A while ago, I posted a version of my story on Cort Johnson's
Health Rising site. Cort posted the following response; the quote in it was from my original post:
What an amazing story zzz– very compelling. How to explain the acute onset is a fascinating problem. I’m surprised more researchers aren’t interested…
Time will tell and it may be not be the entire picture but I think Goldstein was right
“Chronic Fatigue Syndrome is a disorder of the management of sensory input by the brain. Information from inside and outside the body is misperceived, resulting in inappropriate sensations. Touch can be painful, odors can cause illness, climbing a flight of stairs can be like climbing a mountain. If input is dysregulated, output will be also, because the brain will make regulatory decisions based on improper ‘data processing’”.
Thanks for the quote.
I could never make it through Goldstein’s books – they’re so complicated – but I think I should try again.
Everyone finds the books difficult to read, but I found them much easier on the second pass.
@Hip, I've been meaning to contact you about these books, since this seems like this is right up your alley. Many of the subjects and medications you've addressed in various threads are also addressed directly by Dr. Goldstein.
May I ask, did any physical ME/CFS symptoms you may have had also go into remission after taking the single dose of isosorbide dinitrate? Physical symptoms such as cardiac problems, orthostatic intolerance, bowel symptoms, muscle weakness or pain, cold hands and feet, swollen lymph nodes, recurrent sore throat, blurred vision.
All my symptoms disappeared completely, except for the brief relapses that I mention in my story. The last five years of my remission I was symptom free with no relapses. I thought I was cured.
When I had my final relapse 16 years ago, some of the symptoms I had earlier never appeared with the intensity that they first had. These include cognitive dysfunction, memory problems, and TMJ syndrome (which never appeared again at all).
For anyone interested, Dr Goldstein's list of 23 medications is to be found
here.
That was just as of his 1996 book,
Betrayal by the Brain. By the time
Tuning the Brain was published in 2003, Dr. Goldstein was using over 140 medications. That's how he was able to get his success rate up so high.
I have just today ordered a copy of Betrayal by the Brain, which you can buy for around £5 second hand.
@zzz, is the book Tuning the Brain that you are reading more useful than the book Betrayal by the Brain, in terms of an ME/CFS patient trying to follow Goldstein's treatment protocol? Or are both books similar?
The two books really form a single conceptual volume. Both are necessary to understand his work. Receptor profiling, which is what replaced the list of 23 medicines and what allowed him to know which of his 140 medicines were most likely to help a patient, is explained only in
Tuning the Brain. This book is about twice the size of
Betrayal by the Brain, and I find that I use it a lot more in my treatment based on this protocol, which I started in August.
Is there anywhere in his books where Goldstein provides a flow diagram to follow, for systematically testing out the effects on a patient of the various drugs he recommends for ME/CFS?
Yes; at the back of
Tuning the Brain, Dr. Goldstein provides such a chart. It contains far fewer than the total of 140 drugs, but it does contain a few dozen of the most common ones. All the drugs he uses are listed in the pages after this chart. They're merely listed in alphabetical order, but after a while, you get a feel for how the whole process works, and the chart is not so important. Also, it's not 100% correct, as Dr. Goldstein acknowledges; the workings of the human brain are far too complex to be summarized in a simple chart.
Nevertheless, the chart is very helpful, especially when learning receptor profiling. Fortunately,
@MNC posted a copy of the chart, along with a summary of how receptor profiling works,
here. Although the chart looks a bit blurry, that's how it is in the book, too.
Is it really true that Goldstein could make 97% to 98% of his ME/CFS patients completely asymptomatic?
No; that figure includes patients who were significantly improved. In his terminology, these were people who could go back to work full time or mostly so, but still had some symptoms.
Surely if this were the case, we would have heard much more about Goldstein's protocols in the ME/CFS community.
Even with the qualification I added above, you would think so. The reasons why we haven't are complex; they're explained at the beginning of
Betrayal by the Brain, and there's more detail given at the beginning of
Tuning the Brain.
Nevertheless, for 20,000 patients to have come to see him (most from out of town), he had to be well known in his day. And indeed he was. In 2002, when it was clear that I was not going to get better on my own, I researched all the CFS specialists working at the time, and decided that Dr. Goldstein sounded like the best. I moved from Boston to Oregon in early 2003, with the intention of going down to California to see Dr. Goldstein once I got settled. By the time my move was complete in the spring of 2003, Dr. Goldstein had retired.
Still, there are influential people in the ME/CFS community who appreciate his work and have done their best to keep it alive. Dr. Goldstein's treatments are mentioned prominently both in
Reviving the Broken Marionette and
Chronic Fatigue Syndrome; a Treatment Guide (2nd Edition), which I think are the two best general treatment guides for ME/CFS available..
@Hip, I know that you got the list of Dr. Goldstein's medications from Erica Verrillo's Web site; she is the author of the second book. Here is an excerpt from
an interview with her last year by Cort Johnson:
3) You’ve written two books on ME/CFS and you’ve had the disease for a long time. I noticed that you included Goldstein’s recommendations in this book. He was a very innovative physician with some really good ideas, but he was also a tough read and I think he’s being forgotten a bit. As someone who has kind of a historical overview of this disease do you see any other kind of gaps in knowledge that are appearing over time?
Jay Goldstein was way ahead of his time. His limbic hypothesis was an accurate account of how homeostasis is disrupted by CFS/ME. I still believe that damage to this very fragile part of our CNS is what produces the sympathetic dysregulation that characterizes this illness in both its acute and chronic stages. On a very basic level, CFS/ME manifests itself as a form of dysautonomia, and Jay Goldstein said it first. Unfortunately, his book is almost impossible to read, which is why the companion volume was written. That being said, researchers need to go back and re-read Goldstein’s book. Otherwise, they are just reinventing the wheel.
Returning to your post...
I am fascinated by your story of a complete remission from ME/CFS by one single tablet of isosorbide dinitrate, but I would guess that Goldstein did not obtain complete, long lasting remission for his ME/CFS patients all that often. The 98% figure seems very improbable: he has apparently treated 20,000 ME/CFS patients, so there must be thousands of these patients still in remission; but I don't see them posting their success stories on the ME/CFS forums. Of course, it could be that most are too busy living their lives to concern themselves with the ME/CFS community.
This is my impression.
However, you might expect at least to hear a few Goldstein success stories on the ME/CFS forums.
I think that that may have been more true at the time he was working than now. There are only a few people on this forum who have actually been patients of Dr. Goldstein's; as you might expect, they were in the group that he failed to help. Yet all the patients I've heard from seem to have a good deal of respect for Dr. Goldstein, whether or not they were helped. I haven't seen any former patients accusing him of being a fraud, for example.
You can see a fascinating description of a typical day at Dr. Goldstein's office (including one of his instant cures) in the last entry of Kelvin Lord's blog,
Everything I Needed to Know About Managing My Health I Learned at Disneyland.
Or could it be that Goldstein's treatments often provided just temporary remissions from ME/CFS? You mentioned in one of your posts that it was not uncommon for many of Dr. Goldstein's treatments to lose their effects after a while, especially nitroglycerin.
When this would happen, Dr. Goldstein would look for a replacement therapy that would help the patient. Most of the time, he found one.
By the way, your post
here, in which you mention Goldstein's claim that for his mononucleosis patients, Zantac usually got rid of all the symptoms in a day or two; well, that claim does not seem to square with
this double-blind, placebo-controlled study that found Zantac had little effect on mononucleosis. Any idea why that should be?
I saw that study. Like most studies, it's hard to know exactly how it was done, how strict the methodology was, etc. But one thing I noticed is that they used twice the dose of Zantac that Dr. Goldstein used. This could be a confounding factor.
Anecdotally, I've seen some people say that they get better results with Tagamet than with Zantac. The essential difference between the two drugs is that Tagamet crosses the blood brain barrier, whereas Zantac does not. This also means that Tagamet has a lot more side effects than Zantac, which is why Dr. Goldstein switched from Tagamet to Zantac when Zantac came out.
Do you have any more info from Goldstein's books on how long the isosorbide dinitrate or nitroglycerin treatments for ME/CFS keep working, before they start to lose their effects?
As with all his drugs, it varied completely by patient, and was unpredictable. Some people could use nitroglycerin patches indefinitely.
I have an idea of what might be causing nitroglycerin to lose its effects — and possibly a way to reset the system so that nitroglycerin begins working again.
I would certainly be very interested to hear about this.
Meanwhile, I should report that Dr. Goldstein's protocol has been working very well for me; I've gone from a 2 to a 4 in activity level since I started it in August. I am hampered by the fact that I have severe tinnitus reactions to drugs at this point, and the vast majority of drugs, including the ones Dr. Goldstein used, can cause tinnitus. Nevertheless, I am continuing to make progress.
@Hip (and others as well), I hope you find this helpful. I think you will find Dr. Goldstein's books fascinating.
[If people want to continue this discussion, it might be good either to continue it the
Betrayal by the Brain thread, or to start a new thread, so as not to hijack the current thread. And please leave a link here to the new location as well. Thanks!]
