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

[*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???

I don't have anything structurally wrong with me, that I know of, eg. bad back. My pain levels never went back that high, and have only gone lower with many changes in lifestyle etc..

GG

 

[Jacque]

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

Ok Wayne...now hear this....About 8 years ago I read a lot about the Bio Charger (multiwave Oscillator)... I was beyond desperate as always and asked if I could rent one for a few months to see if I felt any different...they were about 15K at the time... I sat in front of this crazy ass machine each day and on the 3rd day I woke up at 6:30 am and could not get back to sleep and felt unusually WELL.... and the days continued on as WELL and better and better... within a week I was taking daily POWER walks and up early ... energy alllllll day.... hardly ANY pain at all....and told everyone in the world to come and try it.... Before you knew it I had to put it at my girlfriends wellness center cuz so many wanted to try it...and we were charging $5 a session... MY REMISSION LASTED 2 FULL MONTHS!!!!!! It was GLOOOOORIOUS....I would sit in front of that thing and cry with happiness.... and I knew the whole world needed to know about this magic after suffering since I was around 13 years old....

Then.................................. the machine kept overheating and I had to send it back to be recallibrated. When it was returned my pain had started to return and I kept sliding.... They changed something on the settings on the machine and I NEVER got my results back... Boy lemme tell ya that was TOUGH... I ended up sending the Bio Charger back. I had a taste of HEAVEN.... It was like someone threw a a huge bucket of water on the fire in my body...

I have since tried a Novalite Multi Wave Oscillator but sent it back as well...no results for pain.

I don't tell this story to everyone....and NEVER attributed my 2 MONTH (not 4 day)remission to anything dealing with the BRAIN...I just assumed it disabled a pathogen or something....but now that we are on this discussion my wheels (the few I have left) are really turning!!! Makes me wonder if there is ANY hope for me with this damn PAIN....

 

[Jacque]

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.

WOW....how the heck can you remember all of the meds that you tried...your memory is obv not like mine!!! did you ever do the eyedrops or did he try the Nitroglycerine?

Too bad there are not more docs in the world like him... we could probably get WELL if we could get these jokers to care about us instead of their FAME and their pocket books.... uggggg sooo frustrating....

Duh...What is the NCF??? I would write him in a minute....

 

[heapsreal]

Holosync CD's that play binural beats are said to work by slowing down brain waves etc. In the early days of my cfs i found them very effective for power naps. If i had a crappy nights sleep and was working the next day sometimes i would sneak home for lunch and listen to the cd for 30min and i would drift off for 10-15mins during this time. It definately refreshed me, they eventually stopped working. I try them every so often to see if they help but no effect.

 

[Jacque]

Ha Ha.... yep got those too.... great for napping or a great meditation for those like me who's minds chatter all the dang time...
Do you deal with a lot of pain as well???

 

[Insomniac]

WOW....how the heck can you remember all of the meds that you tried...your memory is obv not like mine!!! did you ever do the eyedrops or did he try the Nitroglycerine?

Too bad there are not more docs in the world like him... we could probably get WELL if we could get these jokers to care about us instead of their FAME and their pocket books.... uggggg sooo frustrating....

Duh...What is the NCF??? I would write him in a minute....

I remember because I wrote down all the medicines I tried with him while I was there. I lost half the notes but still have half and quoted from them to you.

The NCF is National CFIDs Foundation
http://www.ncf-net.org/
It's an M.E/CFS group. I don't know if they would still pass the letters to him. I read about it a long time ago in one of their newsletters. I'm a member. You can always write to them and ask.
I remember him trying eyedrops on me. Can't remember what was in them. They did not work. I did not try nitroglycerine.

 

[Jacque]

I remember because I wrote down all the medicines I tried with him while I was there. I lost half the notes but still have half and quoted from them to you.

The NCF is National CFIDs Foundation
http://www.ncf-net.org/
It's an M.E/CFS group. I don't know if they would still pass the letters to him. I read about it a long time ago in one of their newsletters. I'm a member. You can always write to them and ask.
I remember him trying eyedrops on me. Can't remember what was in them. They did not work. I did not try nitroglycerine.

What are your main symptoms? Is pain a huge issue for you as well?

 

[Jacque]

What are your main symptoms? Is pain a huge issue for you as well?

I will look into that group as well...THANKS...

 

[Enid]

Thanks for highlighting this book Jacque - not only reasonable explanation but I think he is spot on. I personally recall the slow decline in mental functioning (fog creep) and normal "control" mechanisms eg autonomic, as some pathogen took hold. Then secondaries (like polio and chicken pox symptoms) as the immune system "crashes" too. If only one knew the original infection to address.

(MRI brain scan revealed "high spots" - so definate brain involvement)

 

[xrayspex]

I got that book in the 90s and think it adds interesting ideas/experience to the picture for us. Gabapentin has been helfpul (but hard for me to tolerate). He is up there with Cheney and Bell in my book of docs back in the day investigating and working on hard on the CFS puzzle.

 

[Jacque]

I got that book in the 90s and think it adds interesting ideas/experience to the picture for us. Gabapentin has been helfpul (but hard for me to tolerate). He is up there with Cheney and Bell in my book of docs back in the day investigating and working on hard on the CFS puzzle.

Yah I tried the Gabapentin but it numbed me in places I "didn't" want to be numb!! I think I am gonna eventually try the Cymbalta or Strattera and do as Sushi and others recommended going LOW and SLOW.

 

[Jacque]

Thanks for highlighting this book Jacque - not only reasonable explanation but I think he is spot on. I personally recall the slow decline in mental functioning (fog creep) and normal "control" mechanisms eg autonomic, as some pathogen took hold. Then secondaries (like polio and chicken pox symptoms) as the immune system "crashes" too. If only one knew the original infection to address.

(MRI brain scan revealed "high spots" - so definate brain involvement)

Yah I wonder which of my numberous infections caused the brain damage...but would it really matter now that the damage is done? I suspect Lyme is at the core of my lifelong suffering, but I could be wrong.

 

[Legolas]

To bad you didn't buy his most recent book "tuning the brain" it's the more elaborate version of "betrayal by the brain". I don't think for exemple he justed IV ketamine at that time, which he did later on.
I've tried several of his proposed medications, or medications targeting the NMDA receptor.
Some worked; acamprosate, gabapentin, guaifenesin, and lately agmatine. (but none to a spectacular extend)
Some didn't work; flupirtine, nimotop, ketamine nasal spray, naphazoline eye drops (aldo i later found out my dose was probably not high enough)

In "tuning the brain" he mentioned having the intention to write another book which unfortunatly never happened.
I think he's truely brilliant, and sacrificed/suffered a lot trying to offer help to people like us.
He purely focussed on the neurological aspect of the disease, but had fantastic results with some people.
I wonder how he's doing now, i hope he's fine.

 

[valentinelynx]

Goldstein was the first MD I saw for my ME/CFS. He was responsible for making it possible for me to finish medical school and residency with my illness. He wasn't satisfied with that, however, since I wasn't 100% fixed! Sadly, he retired. Wish I had his brain to pick today about what to do next. Dr Tennant is helping me quite a bit, but he is a pain specialist foremost, although a fair number of his patients have fibromyalgia and/or ME/CFS.

 

[Jacque]

Hi again. I copy and paste his emails. I only kept his replies, not my questions. He was a very kind man, I guess he would be helpful if you wish to ask him something. I just found him on the internet when googling for Dr.Goldstein. He said somewhere he saved his life. I emailed him and replied very kind.

This is him: https://plus.google.com/100143401441039051091/posts
email: mattsimonmx@juno.com

I tried the eye drops Goldstein mentions as first line and it doesn't help me at all. Even when my eyes burn 24/7 for the computer they don't help. The rest of the medications are serious matter that I won't take on my own without medical supervision, so I didn't try more.

Best regards from Spain.

PS: Aren't you the one who was taking rituximab or GcMaf and getting better? I think to remember reading something like that from you.

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I'm so sorry to hear that you are so sick. I certainly know what it's like. Yes, I am still well. I'm leading a normal, active life. Every now and then I have some of the old symptoms, so I take my meds for a few days and the symptoms go away. Dr. Goldstein's method was based on trial and error. You try medications, and see if they help. If they help you continue taking them, and try mixing them with other meds that help. The objective is to down-regulate the nervous system. I will send you an article by Dr. Goldstein that is more helpful and understandable than the book. If you can find a doctor who will help you by writing the prescriptions, you could try it.

There is one doctor in California who is doing similar things. Dr. Peter Madill in Sebastopol, CA. His phone number is (707) 823-3312. You are welcome to use my name if you contact him.

I'll send you the article in a minute.

Matt
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I believe Dr. Madill does provide phone consultation, but it may be expensive. He also does not do the exact same thing as Dr. Goldstein. But it's worth checking with him. The meds that worked for me were:

Neurontin
Baclofen
Chlorzoxazon
Mirapex
Guaifenesin

I took the max doses of all of them at the same time! But I didn't have any side effects. I stopped taking them when I got well. I only take a dose a few times a year now, if I have symptoms.

Matt
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Here's the article I mentioned in my last email.
Matt
Attached Files:

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  Goldstein Approach Article.pdf
  
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MNC, Today at 2:53 PMReport

 

[Jacque]

MNC from Spain was wonderful enuf to look up the information above!!!!!!!!!!!!!!!! I have searched high and low looking for a doc who was familiar with Dr. Goldsteins work and wha la... MNC had the info... You can bet your sweet bippie I am gonna learn all I can about Dr. Madill, and report to all of you if I decide to see him.

I am of course going to continue with the Rituxan but my gut tells me it is not going to resolve this chronic PAIN issue of mine... My intuition is rarely off base and my intuition SCREAMS ... not whispers... that I am one of the patients Dr. Goldstein refers to... And it all makes PERFECT SENSE to me....

I am gonna get a life somehow .. someway.... someday ... while I still have a few good livin years left!!!

NEVER NEVER NEVER QUIT!!!

 

[Jacque]

Goldstein was the first MD I saw for my ME/CFS. He was responsible for making it possible for me to finish medical school and residency with my illness. He wasn't satisfied with that, however, since I wasn't 100% fixed! Sadly, he retired. Wish I had his brain to pick today about what to do next. Dr Tennant is helping me quite a bit, but he is a pain specialist foremost, although a fair number of his patients have fibromyalgia and/or ME/CFS.

Check out the info I just copied...that was sent by MCS in Spain... Verrrrry interesting. Lets DO this!!

 

[Insomniac]

What are your main symptoms? Is pain a huge issue for you as well?

Exhaustion + pain - the biggest thing. The exhaustion / weakness bothers me more but really they are both the same high level and I feel are strongly connected.
I get someone to drive me to go out 2 times a week max. Even if the pain all disappeared I'ed still be unable to drive or walk a lot.
I have intolerances and nasal allergies a lot too. But that symptom does not bother me like the other 2.

I remember meeting a man at his clinic who told me he had been there before and that Dr Goldstein had got him well. He now came back only because he wanted to go skating so came to see if he could get more energy. OTOH I was not helped at all.
There was also a huge variation of patients there. There were some like me who could not drive at all and were in poor shape. Then there were other patients who drove there and could walk a lot and were less severe. I am curious if the patients who were helped had less allergies or were more able or not. It's a shame there was no proper research in it.

 

[Shell]

Rachel, I wonder if there's something about the "when" of this illness that effects how things help or don't help.
With a lot of diseases and infections, the earlier treatment starts the better the patient does.
Perhaps for those of us on the "can't drive-can't walk" end of things it's because we've been too ill for too long and so any therapies are going to hit harder and take longer. I don't know - but it's something I wonder about.

 

[xrayspex]

jacque that goldstein approach pdf doesnt work for me, is there another way to share the info?