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

[Michael]

sorry I haven't read most of this but Cort has an article here on FM pain being caused by mast cells. We have a lot of other info on this too now.

I've been on the elimination diet since 2005 and discovered approximately 5 years ago that certain foods brought back my FM pain. I'm pain free and muscle spasm free as long as I avoid those. I'm currently experimenting with mc meds to see if I can control these.

tc ... x

HI,
I'd like to learn what foods you have discovered that you need to avoid!
Thanks..

 

[xchocoholic]

Hi michael,

So far my known fm triggers are bacon and tomatoes. I'd been on a gfcfsf + chemical free diet for
a couple of years before I narrowed it down to these. It's easier to figure out your triggers after you've
stopped eating processed foods since it's nit always clear what's in these.

So far, I've linked phlegm in my throat to soy, shiners to dsiry, myoclonus to gluten, etc. etc.

We can have different triggers tho. Hth .. X

 

[stephano75]

Just stumbled on this old thread. I actually think Jay Goldstein was a genius and was way before his time.
I agree to an extent with those who suggest he wasn't focussed on the 'entire' picture....but his willingness to trial many medications off-label remains above and beyond what is available now in 2013. You've got to look for a circuit breaker somewhere I the illness, and it doesn't get any more central than the brain/central nervous system. Incidentally, his latest book was Tuning the Brain and that was published in 2004- hardly the ancient or irrelevant date that some have implied in this thread. Can anyone name me a successful CFS protocol that's come along since? I am still in CFS hell 17 years after falling ill. Unfortunately I only learned about Goldstein after his retirement or I would have gone to the US to see him. This guy changed some people's lives. The big problem is you simply can't mess about with these drugs off label, even assuming someone will prescribe them for you- it's just not viable without proper oversight. I also know that I have had exactly the rapid response he writes about with various agents.. It absolutely involves a neurochemical issue...and that despite all the hormonal/immune etc anomalies I can identify in my test results. Who knows what is cause and effect with anomalies in test results??? I have had dramatic responses with 1) Rebound from SSRIS. IE- ssris themselves are terrible for me...but on two separate occasions when withdrawing from them (quite fast), instead of ill effects there has been dramatic therapeutic effect, with most symptoms disappearing. Reasoning? Maybe a dopaminergic rebound...but I can't find any way to reproduce it sustainably. This is absolutely consistent with Goldstein's theories re lack of dopamine/noradrenaline in some parts of the brain....caused by issues with the NMDA receptor. 2) Dramatic response to dentists anaesthetic needle. (atricaine + epinephrine). Again- I felt utterly rotten going to the dentist- exhausted, foggy, depressed etc ...and was literally whistling a tune 45 minutes later after leaving. Only variable was the injection. I don't know whether to put this down to the atricaine or epinephrine or both 3) Reaction the following day to a few drinks (alcohol) the night before. I hardly ever drink anymore because I can't tolerate it...but it happened a number of times that I had an excellent bouce the next day after alcohol the night before. Again, there is some evidence this involves some sort of dopaminergic rebound brought about by central nervous system depressant effect of alcohol. Of course,l after feeling good until early-mid afternoon, I would the suddenly crash after the effects wore off...and enter a special kind of hell. Not sustainable...but again a fascinating clue. 4) Most stimulants (pseudoephedrine, dexamphetamine, reboxetine etc) tend to be beneficial...but again are completely unsustainable. Noradrenaline and dopamine boosters here...and this could also be because it helps things such as POTS. After this ramble, I would simply say this- there is so much questionable stuff out there about CFS and gut bacteria, stealth infections etc etc. I am dubious about all of it- this is absolutely a real and physiological illness, but the heart of the matter is dysregulation in the brain and central nervous system- thjis may well have been initiated by infection + stress + genetic predisposition or any combination of the above...but it's the central regulatory mechanisms holding the key to salvation...and Goldstein was pursuing that.

 

[Jacque]

Yes it makes a lot of sense to me too Stephano and I too have experienced all kinds of weird things on drugs, alcohol, etc... God I miss gettin my drink on occasionally...and when I do I CRASH...bad...

Dr. Madill in Sebastapol, California is verrrry familiar with Dr. Goldsteins work. I spoke with him on the phone months back and he is all about brain/limbic system as a real culprit in all of the insanity of this illness... you might want to call and speak with him,don't know where you live? I have been too sick to drive the 8 hours...but am considering going to interview with him soon... Google him... he seemed like a really neat guy when i spoke with him.

 

[stephano75]

Yes it makes a lot of sense to me too Stephano and I too have experienced all kinds of weird things on drugs, alcohol, etc... God I miss gettin my drink on occasionally...and when I do I CRASH...bad...

Dr. Madill in Sebastapol, California is verrrry familiar with Dr. Goldsteins work. I spoke with him on the phone months back and he is all about brain/limbic system as a real culprit in all of the insanity of this illness... you might want to call and speak with him,don't know where you live? I have been too sick to drive the 8 hours...but am considering going to interview with him soon... Google him... he seemed like a really neat guy when i spoke with him.

Thanks Jacque.
I am in Canberra, Australia but I definitely like the idea of getting in touch with Dr Madill so will follow that up.
My feeling is that infection is often the cause of these illnesses (+ other variables such as genetic pre-disposition, specific environemnetal stressors etc)...and this causes ongoing neurological/CNS issues.

The Dubbo infectious outcomes study looking at post-viral CFS found that around 10% of sufferers of EBV, Q fever and Ross River virus went on to develop CFS...and they suggetsed it waqs a "hit and run injury to the brain" caused by the virus.

I also found this very, very interesting:

http://www.health.harvard.edu/blog/infection-autoimmune-disease-linked-to-depression-201306176397

 

[Jacque]

Dr. Madill spent a lot of time with me on the phone when I called... he is semi retired as I recall, which would explain why he was so relaxed with me on the phone. I do plan to see him in the coming months - just have ailing family members taking up any travel time right now.

I can't rememb if you told me you read Goldsteins book...but this is EXACTLY his theory. And it all made COMPLETE sense to me... and would explain the wide variety of symptoms and DYSFUNCTION in all of us, the brain is a very complex organ. That article made complete sense as well. I think in the future "neuro" science will make a lot more sense for all of this... Our computers for our bodies "literally" have a virus and need to be defragged... Ohhhh if it were only that easssssy huh??

Wow...Australia would be a looooong way to come but maybe worth it?

Great article...thanks.

 

[Jacque]

I read an article today about a mycoplasma Brucelliosis being implicated in ME, CFS, MS, Parkinsons, Alzheimers...and that it hits different areas of the brain - hence causing different brain autonomic malfunction... So as I read it I thought...if we have brain damage...are we just SCREWED? If you want me to email you the article send me your email in a PM...
Also... I had an idea today...wondering if Dr. Madill would do a quick conference call for some of us interested in how he goes about treating the BRAIN...do you think that would be good if he would even consent to it? Before I call and ask...Would be worth asking anyhow...

 

[xrayspex]

hey any updates Jacque, others? I have been working more last year, aided by practically homeopathic doses prn of an old snri and old muscle relaxor. I had transitioned mostly off of even those but then I bizarrely got the flu like 10 days ago---which is unsual for me---I briefly had a fever, cough, chills, body aches etc and took o-t-c with tylenol, dxm and antihistamine and that brought down fever and allowed me to sleep. Now most of the respiratory symptoms gone and energy coming back but have really bad stinging pain in spine, I think partly from having taken the flu meds (I got rebound pain from otc pain relievers) and back of head really hurts, neck feels swollen and sitting hard on me but walking or lying on comfy bed ok.

I thought of Goldstein because I had some old baclofen in drawer and took teeny specs of that last couple days to combat bad pain and it helped---but now I am feeling very creeepy mentally from it. too much baclofen depressed me and dropped bloodpressure too much when first tried it. tiny amount seems helpful in crisis lke this....but anyway, has anyone found good remedies to combat aftermath of flu? I am surprsed I got it..have sjogrens and usually autoimmune system jacked up....wonderingif small amount of snri normalized immune system making me more vulnerable to bugs.

 

[xrayspex]

http://en.wikipedia.org/wiki/Baclofen

in some ways it sounds like perfect thing for those of us with pain to try and it does help that
but it seems to me to be such a depressant effect as well....feel sort of inside a bell jar now
thing is dont tolerate stimulant meds well....and lately even my black tea habit been causing too much anxiety even half a cup...I like idea of baclofen for pain but cant deal with mental effects--oddly the first day it puts in good mood and 2nd day feel nuts hah
maybe will post a thread on it and see if any remedies for side fx

I stopped the neurontin year ago for similar probs and it caused backlash spasticity when dose wore off and bruising

 

[Wayne]

(I got rebound pain from otc pain relievers) and back of head really hurts, neck feels swollen and sitting hard on me but walking or lying on comfy bed ok.

Hi xrayspex,

Sorry to hear about your pain issues. I'm a big believer in liposomal Vitamin C, and Shellbell has posted on how she uses it to relieve pain. In case you might be interested, we were discussing it ON THIS THREAD.

Best, Wayne

 

[Jacque]

http://en.wikipedia.org/wiki/Baclofen

in some ways it sounds like perfect thing for those of us with pain to try and it does help that
but it seems to me to be such a depressant effect as well....feel sort of inside a bell jar now
thing is dont tolerate stimulant meds well....and lately even my black tea habit been causing too much anxiety even half a cup...I like idea of baclofen for pain but cant deal with mental effects--oddly the first day it puts in good mood and 2nd day feel nuts hah
maybe will post a thread on it and see if any remedies for side fx

I stopped the neurontin year ago for similar probs and it caused backlash spasticity when dose wore off and bruising

Well.... I have GLORIOUS news in the PAIN arena... There is a reason I have not been here much on PR... I am actually back to work!
Now... I would love to tell you I am PAIN FREE... not there....but what I can say is this!! I was at a pain scale of 8-9 every damn day and 10 at night...as all of my past posts and journal entries suggest.... It was HELL on earth and was suicidal a LOT of the time...
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....
In regard to Baclofen...that stuff made me soooooo DEPRESSED... I flushed it!
I was told to GET OFF of the OPIATES...which I said GLADLYYYY but I would kill myself withouth them and hated taking them....
He recommended a drug called Subutex which is used widely in Europe for Neuropathic pain...but used here in the good ol US for getting people off of Opiates and Heroin. It was a tough go getting used to the drug for the first 2 weeks...practically slept the whole time.... but IMMEDIATE reduction in pain.
I was taking about 8-10 Norco a day and getting about a 25% reduction in pain and now take only ONE Subutex a day and get a 75% or more reduction in pain... And SLEEP better than I have in 30 years...which is why I am guessing I am getting better and better....
I did LAUNCH right back in to work...and have paid a heavy price with flu like symptoms returning and can't seem to get my body strong enuf to be able to do a normal human day with an outing or going our in evening without a HUGE crash then next day from "VIRAL" beast returning... That is my focus now..
Not every doc can prescribe the Subutex...If you do decide to try... call me and I will give you a few tips... 805-904-6469... Just too much too type and I am in a hurry... sorry so scattered.

Sooooo anyhow .... finally something GOOD to report... Please feel free to contact me....

 

[xrayspex]

Jacque that is great! I will send you private note
I had considered that too when they took propoxyphene off the market (that had helped me a lot but also had some real downsides) and I couldnt tolerate other pain meds available--but I couldnt figure out reasonable way to try it--I dont think they like to give it for pain and I had never abused meds and not willing to put self in that category to try it.
I also wondered about tolerating it for me because I have to take such small doses of new things i try and subutex not sure you can break it into crumbs or quarters etc?

given how well it helps some function with pain its really too bad not used more often, I wonder if most pain clinics considr using it (when you arent labeled as drug abuser or addict) ?

I also work fulltime too (not the last week though, sick) and homeopathic doses of various meds I stringed together to help brain was part of how keep it going....but there are times (like now) where it really fails and I question how long can keep jerryrigging this situation together like that!

 

[Wayne]

It was a tough go getting used to the drug for the first 2 weeks... practically slept the whole time.... but IMMEDIATE reduction in pain.

Hi Jacque, I'm always SO happy to hear reports like this. Congratulations on your improvements! Just wanted to mention that a friend of mine that started on transdermal narcotics began to sleep an inordinate amount. She became concerned, but her doctor assured her it was just her body making up for lost sleep in the past, and that the excessive sleepiness would pass after a month or so, which it did. --- Please pace yourself well.

 

[heapsreal]

Viagra was mentioned by goldstein as a potential treatment for cfs. I always assumed that it probably worked by improving cerebral circulation, but i have some more info i came across.

Im on abit of a research into ammonia as i believe this is apart of my sleep issues and is an issue in our brain fog to some degree? It seems viagra reduces ammonia through reversing oxidative stress from hyperammonia. I will look further into this.

 

[Jacque]

Jacque that is great! I will send you private note
I had considered that too when they took propoxyphene off the market (that had helped me a lot but also had some real downsides) and I couldnt tolerate other pain meds available--but I couldnt figure out reasonable way to try it--I dont think they like to give it for pain and I had never abused meds and not willing to put self in that category to try it.
I also wondered about tolerating it for me because I have to take such small doses of new things i try and subutex not sure you can break it into crumbs or quarters etc?

given how well it helps some function with pain its really too bad not used more often, I wonder if most pain clinics considr using it (when you arent labeled as drug abuser or addict) ?

I also work fulltime too (not the last week though, sick) and homeopathic doses of various meds I stringed together to help brain was part of how keep it going....but there are times (like now) where it really fails and I question how long can keep jerryrigging this situation together like that!

Yes you can break the pills in halves quarters or crumbs.. I only do 1/2 two times a day..as opposed to 8-10 Norco a day... CRAZY CRAZY!! And sleep better than I have in 35 years .... Only ONE BAD side effect... has lowered my sex drive something TERRIBLE... Numbing the nerves... makes sense... ugh... So that is a CRAP side effect... And YES pain clinics should use it but don't and it is very HARD to find a doc to prescribe it for you!!! Sucks!

 

[xks201]

Yes you can break the pills in halves quarters or crumbs.. I only do 1/2 two times a day..as opposed to 8-10 Norco a day... CRAZY CRAZY!! And sleep better than I have in 35 years .... Only ONE BAD side effect... has lowered my sex drive something TERRIBLE... Numbing the nerves... makes sense... ugh... So that is a CRAP side effect... And YES pain clinics should use it but don't and it is very HARD to find a doc to prescribe it for you!!! Sucks!

Did the Subutex do anything for fatigue? Thanks.

 

[helen1]

@Jacque, I'm interested in your subutex experience as i'm also trying some but less than you by the sounds of it - about 0.2 mg, just a speck really and only about 2x a week, for sleep too, as like you haven't slept well for a couple of decades. Not as dramatic results as you, but still good.

Last night slept from 10 pm to 4:30, then back to sleep for an hour. Wow. I also feel really well the days I take it, in an excellent mood and fatigue reduced by about 90% and no negative consequences the next days.

I'd take it every day but I'm concerned about the addictive potential as it's an opiate, even though i'm taking such a minuscule amount. What's it doing to our opiate receptors? What are your thoughts on the addictive potential?

 

[alex3619]

Goldstein was working on something called the Limbic Hypothesis, if I recall correctly. Now we have researchers at Stanford talking of ME/CFS (CCC) as a possible Limbic Encephalitis.

 

[Seven7]

Goldstein was working on something called the Limbic Hypothesis, if I recall correctly. Now we have researchers at Stanford talking of ME/CFS (CCC) as a possible Limbic Encephalitis.

Is the best explanation for what I feel (swollen and Bumps in head) which my doctor says is swollen lymphnodes. My neuro says imflamation is imposible

 

[helen1]

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...