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

Dufresne

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@Thomas,

Yeah, I noticed on the other thread you managed to get an appointment for the ketamine. That's great! I'm sure you're looking forward to that.

Such a resourceful fellow you are. And it kills me how you're able to get in touch with all these top gunslingers, and not just phone calls and Skype sessions, but breaking bread and such. Aren't you going bowling with KDM next month? ;)

Actually I've spent hours trying to process all the terrific information on the other thread (very informative @zzz). It's almost unbelievable the way stubborn symptoms can be lifted to this extent despite the underlying causes remaining. I wouldn't believe it if I hadn't experienced it myself. So the toxicities are real, as are the infections, but the suffering isn't absolutely necessary. Just like when two people share the same stressors and only one of them becomes disabled. Maybe this is our best chance to become that other guy.

Ketamine is definitely not accessible at the moment. My doc is facing off against the nazis again. He's actually taken heat for sticking up for a guardian that had an autistic child removed from her charge because she had him on a gluten/casein-free diet. Then there was the time they came after him for IV ascorbate... Anyway I have several interventions to busy myself with in the meantime while I try to figure out the ketamine thing.

Ascorbic acid can greatly reduce my oxidative stress; actually better than any other antioxidant I've tried. Methylfolate is a close second. Unfortunately I haven't been able to sustain either of these, but I just got through a Martin Pall lecture and he mentions the two can go really well together and the former can sustain the latter. I know a couple other biotoxin sufferers who've done well with vitamin C, and I hear great things about the liposomal version.

Keep trying stuff, you're eventually going to get a hit.
 

Wayne

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My doc is facing off against the nazis again. He's actually taken heat for sticking up for a guardian that had an autistic child removed from her charge because she had him on a gluten/casein-free diet. Then there was the time they came after him for IV ascorbate...
Wow, unbelievable! I guess audacity by government "authorities" knows no bounds.
 

Dufresne

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Wow, unbelievable! I guess audacity by government "authorities" knows no bounds.
It wouldn't be a problem if he was a naturopath or alternative practitioner. But they come after you if you're an MD and you practise anything outside what they deem medicine. I understand "the authorities" are trying to uphold the notion of practicing evidence-based medicine, but where is the line drawn? IV ascorbate and an elimination diet is going too far, I think. These are generally recognized as safe and, with regard to autism, it's not like they have anything better to offer.
 

JPV

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I understand "the authorities" are trying to uphold the notion of practicing evidence-based medicine, but where is the line drawn?
I think it's more about making sure that they spend all of their time pushing expensive drugs for pharmaceutical companies.
 

xena

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\

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.
]
@Dufresne
What were those two drugs? Those sound like very nice effects
 

Dufresne

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@Dufresne
What were those two drugs? Those sound like very nice effects
Unfortunately they're alcohol and opioids. Both of which are in that top right section of Goldstein's treatment/diagnostic guide. I'm sure he'd agree that GHB would fit nicely there too. All of which prevent my PEM from setting in.

While baclofen has been a great drug for me it doesn't have any impact on PEM. The effect of benzos doesn't last and is nothing to write home about. I got nothing out of Gotu Kola, which is in the same box in the most recent version. I've not tried the others but it seems to be only the endorphin agonists that really do it for me, particularly the alcohol.

It's probably worth mentioning I've a good deal of alcoholism in my family and that I had to give it up myself. I've no doubt it's hereditary. Perhaps it relates to something like what Goldstein suggests can perpetuate ME/CFS. In any case, within a few days of drinking essentially every symptom I had would go away. The swelling under my eyes and the redness in my face would fade out; no more fasciculations, EMF sensitivity, PEM, nasal congestion, brain fog, etc. I know with certainty these symptoms are caused by a whacked out immune system responding to ambient biotoxins as well as those from infections, along with sensitivities and so on. That's to say REAL stressors, but it all goes away when I correct this apparent glitch in my head. Unfortunately the only thing crazier than my symptoms is me on the hooch.

I don't have a better explanation than that proposed by Dr Goldstein. I'm convinced he was onto something. I know another on the forum in a similar situation. He maintains great improvement from taking suboxone, and does so without a buzz. I've been focused on my infections and toxicities for some time and I've not used alcohol or GHB in years, but now I figure I've to work out a similar fix as I continue to chip away at my stressors.
 
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xena

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In any case, within a few days of drinking essentially every symptom I had would go away.
that's very interesting! i haven't the slightest understanding of Goldstein's work; I guess i'll have to look into it. Best of luck to you, it seems like you have a good strategy going.
 

Jacque

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This is allll so mind boggling!!! I too take Suboxone for my nerve pain and it has helped greatly for me to finally get some sleep... but alcohol on the other hand makes my symptoms flare like wild! Oh how I wish it did not! What I would give to have a martini every night!!! But the price I pay for drinking is terrible!!! I am just disgusted that someone did not continue with his work.. I am completely convinced our illness is one of brain damage caused by either viral or bacterial infections...and when your computer is no longer sending the right messages... one becomes FUBAR!!!
 

Dufresne

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This is allll so mind boggling!!! I too take Suboxone for my nerve pain and it has helped greatly for me to finally get some sleep... but alcohol on the other hand makes my symptoms flare like wild! Oh how I wish it did not! What I would give to have a martini every night!!! But the price I pay for drinking is terrible!!! I am just disgusted that someone did not continue with his work.. I am completely convinced our illness is one of brain damage caused by either viral or bacterial infections...and when your computer is no longer sending the right messages... one becomes FUBAR!!!
Perhaps Goldstein's theory of limbic dysfunction could explain the common phenomenon of alcohol intolerance in ME/CFS. It might also account for the disparity seen among the treatments that help various groups of sufferers. Certainly it's clear from a look at his diagnostic/treatment guide that one man's poison is another man's medicine. And isn't this what we find again and again with this illness?
 

Jacque

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Sooo True.. Have you all heard of the book BRAIN MAKER??? I guess it is a GREAT book and theory!! I am buying it today and plan to do the probiotic implants! Can't hurt and will be minimal cost.. The theory is your BRAIN function is Directly linked to your Large Intestine!! Only 3% of probiotics taken orally make it to the large intestine...so you need to do rectal implants of certain probiotics... It is worth a shot and I guess some people with horrible illnesses are recovering.. Stay tuned!
 
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Just my two little pennies here, but it's always seemed to me like he basically tried a wide, wide variety of drugs on patients that may have temporarily helped them (on average), but basically by suppressing symptoms, and not addressing or considering what might have been causing those symptoms. If this drug didn't work, then try that one, if not that one, then let's try this one...sometimes dozens of drugs...most of them temporarily suppressing symptoms.

Of course this can be very helpful and NECESSARY when patients are in extreme, agonizing pain, etc., but isn't it also good to try and consider what might be contributing to those symptoms? Like environmental exposures, pesticides, fungicides, chemicals, etc -- whatever it might be that is screwing up our immune systems?

I'm sure he was a good hearted man, who wanted only the best for his patients, and certainly may have had health problems at the end. But it's my understanding that he didn't just 'retire'. He was disciplined by the California State Medical board, and because of that, lost his license to practice medicine.
I have just been going through the drugs he recommends and it’s quite a motley mix. I don’t think it’s all “just” stuff for symptoms , like it’s not all sedatives and whatnot. The fact that iv lidocaine helped dramatically, and ketamine is v interesting to me, curious about exploring IOM channels in me/cfs. Then the fact that he used acetazolamide gives me some more respect for him too. I cringed at the word “neurosomatic” Bc I don’t think the pain felt in cfs is signaling error or whatever and think there’s peripheral metabolic issues and cell damage explaining the pain, but he seems to have had some impressive results. What wouldn’t many of us give to at least have a physician treat our symptoms. I would be curious about reading his book if anybody has a pdf I can not afford it at the moment.
 

Hip

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@Hip you don’t happen to have a pdf of any of his books where he explains the theory behind this stuff, do u?
I've got a paper copy of Betrayal by the Brain, which I bought cheaply second hand. It's been a few years since I looked at it, and can't remember much detail (but I was not able to read it properly anyway, since I have reading difficulties due to the bad ADHD I got after my brain infection).

However, my impression is that Goldstein's treatments are a bit "gimmicky"; they are flash-in-the-pan treatments that may work for a short time, but may not provide a sustainable long-term improvement. I believe someone possibly on this thread, or on another Goldstein thread, made a similar comment: of patients getting amazing transient improvements, but not permanent relief from ME/CFS symptoms.

My own experience with one of Goldstein's treatments is a case in point: when I started taking Wellbutrin (bupropion), which one of Goldstein's top 23 drugs, it instantly and dramatically reduced brain fog levels — to the point I was able to resume doing complex computer software programming (my previous profession).

I thought I had found my own personal solution to ME/CFS; however, two weeks after I started taking Wellbutrin, it just mysteriously stopped working entirely. I've never found any good explanation for this; I thought it might be tolerance build-up, so stopped the drug for a few months; but when I resumed it again, no luck. My Wellbutrin experience detailed in this post.


From what I was able to read, the book is not that well organized. It has a lot of case studies, and mentions ad hoc biochemical details in each case; but not really any overarching theory, apart from his "neurosomatic" ideas, which is just another term for what we now call central sensitivity syndrome (which I think might exist in ME/CFS, but even if it does, would only explain a small subset of ME/CFS symptoms; I don't think CSS is the overall cause or explanation for ME/CFS).

Perhaps the most important diagram in the book is the one given in this earlier post. That post also explains Goldstein's technique of using a "receptor profiling" drug to test which neurotransmitter receptors are out of balance in a patient, and then once this is discovered, to prescribe an appropriate drug to address that imbalance. Each box in that diagram contains a list of drug that all work on a particular receptor.

That's the core process in Goldstein's treatment methods. More info about receptor profiling in this post.

That diagram perhaps does have some use: if for example you found benefits from one drug included in the boxes in the diagram, then perhaps you might try the other drugs in the same box, which work on the same receptors.


EDIT: Actually I don't think that receptor profiling diagram comes from Betrayal by the Brain; it may come from another one of his books: Tuning the Brain.
 
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my impression is that Goldstein's treatments are a bit "gimmicky"; they are flash-in-the-pan treatments that may work for a short time, but may not provide a sustainable long-term improvement.
yea a lot of his treatments do seem gimmicky however I admire someone willing to treat the distress even short term and he used some really interesting medicines. I have been recently scripted oxytocin for pain (at an overly high dose I think) and it is an odd one. His ideas about baclofen, gabapentin, lidocaine, stuff that increases cerebral blood flow like nitroglycerin and acetazolamide , seem very interesting. I don’t think it’ll yield a cure for me but he seems to have odd mix of drugs , some of which seem possibly v dangerous, some which seem possibly very helpful. I wish I had a clinician willing to try some of these to ease discomfort. The receptor profiling thing is obviously oversimplified (most of those drugs are very dirty ) but also seems like an interesting cowboyish technique to yield possible practical info quickly
 

Hip

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I have been recently scripted oxytocin for pain
A small subset of ME/CFS patients do make substantial improvements on oxytocin, so definitely worth trying (unfortunately it did not work for me). Same goes for the other Goldstein drugs: they may be worth trying, just in case you get benefits that are sustainable.

You can obtain injectable oxytocin without prescription from bodybuilding websites that sell peptides. That's where I got mine.
 
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A small subset of ME/CFS patients do make substantial improvements on oxytocin, so definitely worth trying (unfortunately it did not work for me). Same goes for the other Goldstein drugs: they may be worth trying, just in case you get benefits that are sustainable.

You can obtain injectable oxytocin without prescription from bodybuilding websites that sell peptides. That's where I got mine.
Oxytocin does work for my pain but also seems to cause a weirdly intense rush and affect my heart rate in an uncomfortable way. It also seems to have a potent negative inotropic effect in studies. I am taking doses way bigger than what Goldstein prescribed tho. Well at least it seems like a decent trade off when I have agony. Doctors aren’t really willing to write opioid scripts for pwME so you take what you can get in terms of weird analgesics I guess.