1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
Discuss the article on the Forums.

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

Discussion in 'General Treatment' started by Jacque, Oct 24, 2012.

  1. zzz

    zzz Senior Member

    Messages:
    244
    Likes:
    619
    Oregon
    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.
    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.
     
    Last edited: Aug 14, 2014
    Gingergrrl likes this.
  2. helen1

    helen1 Senior Member

    Messages:
    340
    Likes:
    235
    B.C., Canada
    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.
     
  3. Gingergrrl

    Gingergrrl Community Support Volunteer

    Messages:
    1,919
    Likes:
    3,184
    USA
    @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.
     
    Sushi likes this.
  4. knackers323

    knackers323 Senior Member

    Messages:
    841
    Likes:
    166
    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 likes this.
  5. Gingergrrl

    Gingergrrl Community Support Volunteer

    Messages:
    1,919
    Likes:
    3,184
    USA
    @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.
     
  6. zzz

    zzz Senior Member

    Messages:
    244
    Likes:
    619
    Oregon
    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.
    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.
     
    Gingergrrl likes this.
  7. knackers323

    knackers323 Senior Member

    Messages:
    841
    Likes:
    166
    @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?
     
    Last edited: Oct 22, 2014
    Gingergrrl likes this.
  8. steve b

    steve b

    Messages:
    6
    Likes:
    2
    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.
     

    Attached Files:

    Gingergrrl likes this.
  9. Jacque

    Jacque Senior Member

    Messages:
    392
    Likes:
    293
    USA - California
    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!
     
  10. redrachel76

    redrachel76 Senior Member

    Messages:
    298
    Likes:
    263
    Israel
    Gingergrrl likes this.
  11. Gingergrrl

    Gingergrrl Community Support Volunteer

    Messages:
    1,919
    Likes:
    3,184
    USA
    @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?
     
    Last edited: Nov 11, 2014

See more popular forum discussions.

Share This Page