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

[Jacque]

ARE OUR BRAINS responsible for our PAIN and ILLNESS??

I recently ordered the book: Betrayal by the Brain and the companion guide off of Amazon. Not cheap books but worth the read and very thought provoking!! But of course Dr. Goldstein has now retired...

I am curious if any of you have read this book and are aware of any physicians that have carried on this research??

Dr. Goldsteins research has found that patients with CFS and Fibromyalgia, ETC. have altered brain function due to damage of the Limbic System, from some sort of infection. Lyme, EBV, HHV6, Herpes viruses, CMV are all mentioned.

Dr. Goldstein uses a variety of vasodilators and had amazing results within minutes ... right there in his office. His work was very involved and specific and he tried many different medications on his patients until he found the one that the patient responded to.

I have been ill for 35 years and I have chased every theory and cure possible. NOTHING has worked... I get worse each year...

I am currently on Rituxan and at 14 weeks. If I am not noticing a decrease in pain by 22 weeks I am going to beg Dr. Kogelnik to explore this very profound book and theory with me, as I feel intuitively that this IS at the CORE of the severe pain I experience every minute of every day... It makes PERFECT sense when you read his book and read the case studies.

He explains all of the crazzzzziness we all experience...theorizing that the limbic system is no longer regulated causing everything to malfunction...

My father in law had severe spine pain for yearrrrs. Had 3 back surgeries with no luck and was taking Oxycontin for pain. He later had a stroke and is partially paralyzed - but interestingly he has NO MORE excruciating pain in his back!!!! I find that intriguing!

I hope that in posting this that I find others who have read Dr. Goldsteins research and can tell me what you have learned or if you know of a physician who has clued in!!

If no one else has read this book...I hope a few of you order it and we begin a discussion on this very very intense subject!!!

Fight On!!!

 

[Sushi]

My autonomic specialist respected this book and it helped him in formulating treatment for patients. I'd guess that most autonomic specialists are familiar with Jay Goldstein's work.

Sushi

 

[Jacque]

Sushi....what is an Autonomic specialist listed as?? I've never heard of that... I want to look for one locally or even in this state...:thumbdown:

 

[Esther12]

Looks a bit dodgy to me, but I've not done much digging. Sounds like his work was lacking in much supporting evidence, and he retired to avoid disciplinary action. Not hopeful signs imo. Sorry.

 

[alex3619]

BBTB is a great book. However its very technical and deep. You will need a medical dictionary to read it, or the internet dictionaries close by. However its also a very old book. I have a copy which I get out from time to time. He was very into testing various drugs, and the book summarized the results he got with this or that drug on various patients.

 

[heapsreal]

I have read his book, very technical and hard to understand but he lists his treatments which he seems to trial and adjust from there. The meds he use arent real cutting edge now but maybe 20 yrs ago when he was practising they would have been. he was quite a few years ahead of the pack. I dont think his treatments are curative but can help symptoms.

Vasodilators i think can help with brain fog and headaches but not if used all the time. One vasodilator goldstein mentions is viagra, it works for things above the shoulders as well as below the belt, lol.

An online pharmacy i get my antivirals from use to put a couple of samples in with my orders. They sat up in the cupboard for awhile and then one time i had this constant headache that just wouldnt move. I threw everything at it for a few days, only getting relief when i took my sleep meds and fell asleep but would wake up with this headache. I had a light bulb moment somewhere in the haze of my headache and remember goldstein mentioning viagra and glycerol trinitrate etc, so out of desperation i took a 1/4 of the V and within about 15mins my headache went, i felt flushed and had a new place to hang my hat, lol. but it did get rid of my headache/brain fog. But using it regularly doesnt get rid of the fog, i find it useful when its the sort of brain fog that turns into a headache and the usual things dont work, then i will pop a 1/4 V and most times it works. I think sometimes these headaches are caused by blood vessels in the brain spasming as V helps them to relax. I also seem to sleep better as well after using it. I should investigate cheaper supplements to use for this purpose but havent got around to it.

Goldstein is also big into baclofen which is a muscle relaxer. I find it good for sleep. onits own its doesnt put me to sleep but when used with other sleep meds it increases quality of sleep. He does say that tolerance to baclofen doesnt occurr but my experience is it does, so i use it irregularly, usually when my sleep gets crappy. They say baclofen is the cheap mans xyrem as its works by similar mechanisms but from what i have heard its not as strong as xyrem.

If u look at cfs/me as an immune/infection as well as neurological disorder, then i think goldstein is good for the neurological side of things. Although i think is work is really helpful i think its only part of the big picture.

cheers!!

 

[Jacque]

BBTB is a great book. However its very technical and deep. You will need a medical dictionary to read it, or the internet dictionaries close by. However its also a very old book. I have a copy which I get out from time to time. He was very into testing various drugs, and the book summarized the results he got with this or that drug on various patients.

Yesss it is Alex....especially when you are brain dead like me.... But... I got the main point and that is he has PROVEN that we with CFS/FM have brain abnormalities as shown in Brain Scans.. he was shot down at every CFS conference etc.. Was told he needed double blind studies etc...and that required HUGE $$$... He took a lot of criticism and maybe he did retire bc of something he did wrong...I don't know.... All I know is I am in damn 8-9 level pain daily and nothing has worked. I look at a lot of us taking Cymbalta or Strattera and it just confirms more of the brain theory... I ain't no genius but I have good intuition...and while reading this book smoke rolled out of my ears... but I did get the very simple point that the BRAIN controls every function and people with CFS/ME/FM have abnormal brain scans... If there is something that I can take that can open some of these damaged pathways... I am surely gonna try it if the Rituxan does not do the trick.... I think most docs poo poo'ed it bc it is too time consuming and would require that they patiently test on EACH patient and really CARE.....

 

[ukxmrv]

I had a copy over 10 years ago but it is probably lost by now. I can't keep books for long as I become allergic to them.

Sometimes you find old patients of his on the cfsfmexperimental yahoo group.

 

[Jacque]

I have read his book, very technical and hard to understand but he lists his treatments which he seems to trial and adjust from there. The meds he use arent real cutting edge now but maybe 20 yrs ago when he was practising they would have been. he was quite a few years ahead of the pack. I dont think his treatments are curative but can help symptoms.

Vasodilators i think can help with brain fog and headaches but not if used all the time. One vasodilator goldstein mentions is viagra, it works for things above the shoulders as well as below the belt, lol.

An online pharmacy i get my antivirals from use to put a couple of samples in with my orders. They sat up in the cupboard for awhile and then one time i had this constant headache that just wouldnt move. I threw everything at it for a few days, only getting relief when i took my sleep meds and fell asleep but would wake up with this headache. I had a light bulb moment somewhere in the haze of my headache and remember goldstein mentioning viagra and glycerol trinitrate etc, so out of desperation i took a 1/4 of the V and within about 15mins my headache went, i felt flushed and had a new place to hang my hat, lol. but it did get rid of my headache/brain fog. But using it regularly doesnt get rid of the fog, i find it useful when its the sort of brain fog that turns into a headache and the usual things dont work, then i will pop a 1/4 V and most times it works. I think sometimes these headaches are caused by blood vessels in the brain spasming as V helps them to relax. I also seem to sleep better as well after using it. I should investigate cheaper supplements to use for this purpose but havent got around to it.

Goldstein is also big into baclofen which is a muscle relaxer. I find it good for sleep. onits own its doesnt put me to sleep but when used with other sleep meds it increases quality of sleep. He does say that tolerance to baclofen doesnt occurr but my experience is it does, so i use it irregularly, usually when my sleep gets crappy. They say baclofen is the cheap mans xyrem as its works by similar mechanisms but from what i have heard its not as strong as xyrem.

Heapsreal....At least you have a place to hang your hat now!!! LOL And AGREE it is ony part of the pic!! That is what I discussed with Dr. K... Treating the immune dysfunction along with the brain crap.... Might be why some just don't respond to treatment??? Soooo many questions so few answers...

In regard to sleep I have been taking 2 Melatonin 3mg each at 8pm...along with a Benadryl. I have been getting to bed by 11 or 12 and up by 9 or 10... I usually get to bed at 4 am... Soooo I hope this continues to work...that would be nice... Always took one Melatonin...but 2 is doin the job!!!

 

[Jacque]

I had a copy over 10 years ago but it is probably lost by now. I can't keep books for long as I become allergic to them.

Sometimes you find old patients of his on the cfsfmexperimental yahoo group.

I will ck that out...Thanks...

 

[Sushi]

Sushi....what is an Autonomic specialist listed as?? I've never heard of that... I want to look for one locally or even in this state...:thumbdown:

Look here: http://potsplace.com/

On the left menu are lists of doctors who specialize in autonomic dysfunction. The doc I saw is listed there in Florida: Dr. Charles Randy Thompson.

Sushi

 

[Jacque]

Will ck out!! Thank YOU!

 

[Jacque]

Looks a bit dodgy to me, but I've not done much digging. Sounds like his work was lacking in much supporting evidence, and he retired to avoid disciplinary action. Not hopeful signs imo. Sorry.

You may be very right about that Esther! I have nooo idea... I do know he tried diligently to try to get the powers that be to look at his research but they were very closed minded... He may be full of hooey...but the info sure resonated with me... and I have practically dug my way to China with 35 years of this illness....and not a quitter... I just wish I could find a doc that would read this and try some of his therapies on me... I guess I would draw the line at Cyanide...lol (for now anyhow)

 

[Wayne]

You may be very right about that Esther! I have nooo idea... I do know he tried diligently to try to get the powers that be to look at his research but they were very closed minded... He may be full of hooey...but the info sure resonated with me...

I don't believe he was full of hooey. I read this book many years ago, and found it quite intriguing. There was a poster on ProHealth who believes Dr. Goldstein gave him many years of improved health by continually modifying the drugs to keep his CFS from worsening. I recently made a post on an interesting thread in which I made a comment touching on some of on Goldstein's work. -- Here's a link

 

[*GG*]

He took a lot of criticism and maybe he did retire bc of something he did wrong...I don't know.... All I know is I am in damn 8-9 level pain daily and nothing has worked..

Have you tried a blood infusion/IV of lidocaine? I know I had pain levels at that point at one time, the Infusion of Lidocaine knocked my pain down 2 to 3 points!

GG

 

[ukxmrv]

I remember his patients at the time posting to some of the earlier groups. They gave accounts of sitting in his waiting room trying new treatments and how he worked to try and find something, anything that would help patients.

The 1990's were the darkest of times for me. In the UK and other countries the psychobabble group reached their peak power in many areas. It was refreshing to see a book that attempted to explain using the science of that time some areas of CFS.

 

[PNR2008]

I have the book and saw Dr Goldstein about 1990. There was no way at the time that I could get any local doctor to follow Golsteins protocol. In a few days I'll read the book again and will be happy to discuss it with you, right now I'm just too sick.

 

[Jacque]

Have you tried a blood infusion/IV of lidocaine? I know I had pain levels at that point at one time, the Infusion of Lidocaine knocked my pain down 2 to 3 points!

GG

No I have not... I know he recommends doing that...but I cannot find a doc to read the book...let alone try the Lidocaine... How long did the pain relief last???

 

[Jacque]

I have the book and saw Dr Goldstein about 1990. There was no way at the time that I could get any local doctor to follow Golsteins protocol. In a few days I'll read the book again and will be happy to discuss it with you, right now I'm just too sick.

Wow u actually saw the man... but are obviously not any better...and I am sorry to hear that. When you are feelin better message me... I think finding a doc that cares enuf to spend the time needed to do the testing is gonna be next to impossible...and I know there is a lot to his discoveries.

 

[Insomniac]

I went to see him in 1998-99 ish. I got baclofen from him which was a new idea then. I only use it occasionaly. I was at his clinic 2 weeks and tried a number of drugs. It did not help me. There were patients there who did get helped and others who didn't. Also when something rarely worked for me, it seemed easy to get tolerant to it.
Just for the record the drugs I tried there were:
Ultram (the only thing that worked other than Baclofen but I did not want to take it continuously)
Lamictal, Gabapenten, Ketamine nose spray, lidocaine cream, Clonex, Zantac, Balofen, Pindolol, Kutapressin...and a few others.
I got no IV's.

He complained to me that no one would give him funding to do a proper medical trial. He managed to find a partner to do a trial with and begged the partner not to put his name on the form asking permission for the trial. From what he said it sounded like he was refused funding just because of politics, not because there was anything wrong with his treatment. I say that as someone who was not helped.
He was a good hearted man who had great pharmaceutical knowledge. He was not in it for profit but to actually help people and once refused a fee from me.
I read that he retired for health reasons. He already had health problems with his back when I was there so that makes sense to me.
Some years ago I read in an NCF newletter that it was possible to write to him if you send a postal letter to the NCF, they can pass it on to him. Maybe they can still do that.??

Like "heapsreal" said, I think he only revealed part of the picture.