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

[voner]

Dr. Goldstein was the first MD I sought out, also. I only went once, In the late 1990s, and stayed for three or four days. Such a unique experience, in many many ways. He Applied the pharmaceutical approaches he describes in the book via a trial and error methodology, and for us that traveled to see him, often trial and error methodology right there in the clinic. At the time, I was lacking medical knowledge about this disease, and so I never could figure out if he knew what he was doing. Nowadays, I realize he was on the cutting edge at the time.

I suspect if he was still actively researching nowadays he would have some very different approaches. That's just my guess, Based on his personality and his trial and error methodology.

A striking part of the experience was the waiting room. Since he didn't just see a patient and then you went home rather he would keep you there all day long, at least that's what happened with me and other people who it traveled to see him. I interacted and got to know other patients who were there at the same time. What an eye-opening experience for many of us in that room. I remember one couple I met..... She had ME/CFS And she was there with her husband who had recently retired as the head of a fortune 500 company. On the third day there, the husband remarked that this experience has been extremely good for him, because he just didn't really understand or essentially believe that his wife was so sick. But with this waiting room full of people who were either in severe pain or just laying around looking really sick and sleeping, he accepted everything about his wife's Illness. There also was a man who used to be a pilot for the airlines and had extremely painful headaches and went to see Dr. Goldstein four times a year for some extremely serious pain medication. I really felt for that fellow.

At one point the husband cajoled myself and the airline pilot and another person into getting in his rental car (We Were the much more active patients) and going for a mile down to the town of Orange and going to a coffee shop so the husband could sit outside and smoke a cigar. He offered everybody who went a cigar, and although I didn't take one, it was certainly enjoyable to sit outside at the coffee shop and just be people and talk and joke and have interesting discussions instead of being sick people. I hope you'll realize what I'm saying, it's just sometimes good to get away from the disease and be a person.

I could go on and on about that experience. I got pretty close and exchanged addresses with a young girl who was in college, and was constantly just laying down In the waiting room and she was really really sick, and one day Dr. Goldstein gave her some pill in about a half an hour later all of a sudden she started to come alive and for the next 24 hours she said I haven't felt like this for years And was So excited. After 24 hours, the effect went away and she was back to being very sick.

It's been over 15 years since I've been there to see Dr. Goldstein, and I still haven't been to a medical doctor who had a clue.

Dr. Goldstein was a clinician who was actively thinking and researching. A very, very rare commodity in the medical field.

 

[MNC]

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

This is the text copied from the PDF:

Receptor Profiling as a Guide to Treatment

Text and Graph by Ben Galvin

When treating a patient with a neurosomatic disorder, Dr.
Goldstein uses a combination of patient history and a
technique he has developed called receptor profiling to
guide his treatment strategy. This technique allows him to
rapidly detennine which of the brain's biochemical pathways
is not functioning properly, and then target the pathway (or
more specifically, the receptors) with speciflc drugs.
The receptor profiling procedure involves giving the patient
a series of drugs, each of which acts on a known set of
receptors. The patient's responses to these drugs are then
used to determine which receptors may be dysregulated.
For example, if a patient's symptoms improve after taking
the drug amantidine, we can reason that at least one of the
receptors which Amantadine interacts with is dysregulated.

A quick search of the medical llterature reveals that
amantldlne ls known to excite dopamine reaeptors (so
amantidine is a dopamine agonist) and inhibits ketamine
receptors (so amantldine is afso a ketamine antagonist),
Further study of the literature aflows us to compile a llst of
drugs which are similar to amantidine in the sense that they
are either dopamine agonists (for examples of these drugs
see the second box on the right, below), or ketamine
antagonists (the third box on the left, below). It is probable
that one of these drugs would further reduce the patient's
symptoms.

If, on the other hand, amantidine made the patient's
symptoms worse, we would look for drugs which act the
. opposite of amantidine
- we would be looking for drugs
whlch are either dopamine antagonists (the second box on
the left, below), or ketamine agonists (the third box on the
right, befow). Agaln, it ls probabfe that one of these drugs
would reduce the patient's symptoms.
If the patient has no response to amantidine, we gain littfe
information and must move on to the next drug In the
series.

Currently eight different drugs are used by Dr. Goldstein for
receptor profillng. Each was chosen either because lts effect
on receptor function is well understood, or because the drug
is partlcularly useful in treating Chronic Fatigue Syndrome.
The diagram below colfates the basic Information that Dr,
Goldstein uses to find a patient's receptor profile. For a
given profillng drug, begin by finding lts name in the center
column. If symptoms improve after taking the drug, the
brown arrow starting on the right leads to a group of drugs
which should improve the patient's symptoms. If symptoms
worseh, the blue arrow stafting on the left will lead to an
appropriate group of drugs. Dr. Goldstein has many agents
compunded lnto eye and nose drops; as well as rapidly-
achting transdermal gels.

Unfortunately things are not quite as simple as described
above. There are literally hundreds of different receptor
types and sub-Wpes, each of which may vary from
indlvidual to Individual. Most drugs also interact
simultaneously with multiple receptor types, some through
mechanisms so complex they have yet to be discovered.

Sometimes, both an agonist and an antagonist at a certain
receptor will make a patlent feel better or worse, Slnce the
same neural network may be regulated by competing
neurotransmltters.

Furthermore, using receptor-speciflc eye and nose drops
may determine regulation of sites on neural terminals or

 

[dannybex]

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

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.

 

[Enid]

Yes I agree with all who suggest - it's part of the picture (and very important one), but why are the endocrine and immune systems so dysfunctional too. Seems to me a chicken or egg situation, and all need addressing depending on predominance (or stage of the illness).

 

[MNC]

Yes I agree with all who suggest - it's part of the picture (and very important one), but why are the endocrine and immune systems so dysfunctional too. Seems to me a chicken or egg situation.

The fact is that there is no proof so far, and there's never been, that endocrine and immune systems are dysfunctional in CFS; that's always been part of the huge speculation of CFS that for some reason some people assume and take for a scientific fact as they did when XMRV was trendy and they stated too many things out of it. Same about things like intestinal disbiosis, allergies, oxygen deficiency, muscle damage, vascular disease, brain damage or dysfunction, etc. Never proved means not true, and we all take thousands of tests which always come out normal.

I would advice to stop stating unproven theories such as those; the immune and endocrine dysfunctions.

For instance I have taken hundreds of immune and endocrine tests in the past 20 years beyond the imaginable, testing for the most rare and unlikely immune or endocrine diseases. Always normal. Everything.

Sadly, at this point, we know almost as little as 40 years ago about CFS.

 

[Enid]

@ MNC - well I had (and many others) thyroid/adrenal and obvious immune problems (appearance of latent viruses). At least the thyroid is being treated. Also at one stage Gabapentin for neurological problems, which over the time gave considerable ease and sleep at last. The interaction (interdependence) of these three systems is well documented.

 

[heapsreal]

The fact is that there is no proof so far, and there's never been, that endocrine and immune systems are dysfunctional in CFS; that's always been part of the huge speculation of CFS that for some reason some people assume and take for a scientific fact as they did when XMRV was trendy and they stated too many things out of it. Same about things like intestinal disbiosis, allergies, oxygen deficiency, muscle damage, vascular disease, brain damage or dysfunction, etc. Never proved means not true, and we all take thousands of tests which always come out normal.

I would advice to stop stating unproven theories such as those; the immune and endocrine dysfunctions.

For instance I have taken hundreds of immune and endocrine tests in the past 20 years beyond the imaginable, testing for the most rare and unlikely immune or endocrine diseases. Always normal. Everything.

Sadly, at this point, we know almost as little as 40 years ago about CFS.

Maybe u dont have cfs/me, maybe u do but many of us have abnormal immune tests, various infections as well as abnormal hormonal isses, that is the case with me.
I think the case that there is no proof is that there has been very limited studies done on this in cfs/me. Individually many of us have had these test and abnormalities and dysfunctions have been found. Of late there has been studies showing natural killer cell dysfunction, even the study on xmrv showing its not in cfs/me was said by the lead researcher that there are definately abnormalities found in these patients.

If doctors arent finding anything in yourself but u dont feel right doesnt mean that there isnt anything going wrong either, but then i dont understand why u would be on a site like this if u felt fine and agreed with everything your docs say?? Im confused

 

[dannybex]

The fact is that there is no proof so far, and there's never been, that endocrine and immune systems are dysfunctional in CFS; that's always been part of the huge speculation of CFS that for some reason some people assume and take for a scientific fact as they did when XMRV was trendy and they stated too many things out of it. Same about things like intestinal disbiosis, allergies, oxygen deficiency, muscle damage, vascular disease, brain damage or dysfunction, etc. Never proved means not true, and we all take thousands of tests which always come out normal.

Hi MNC,

I agree with Heaps, and humbly disagree with your statement that 'never proved means not true'. There are dozens and dozens of studies that show immune abnormalities -- the problem is is that many of the studies have conflicting results. Doesn't mean however that a particular study wasn't "true" for the patients that were studied. There are also many studies that show mitochondrial damage or dysfunction, muscle damage, vascular and circulation issues, brain/spinal fluid problems, etc., at different levels in different patient populations. We all have different reasons/causes -- usually multiple -- for why we're sick.

Also consider the relatively consistent finding that most of us never or rarely get a full-blown flu or (for example) sinus infection with a raging fever (a normal immune response). Instead, we may have a pseudo-flu with a raised temp for a day or two, then it's back to subnormal body temps, even if our thyroid tests come back as "normal". That suggests, but yes, does not "prove", some sort of immune dysfunction. At least to me...

My main point was that Goldstein seemed to just throw drugs at the symptoms, instead of trying to look at the bigger picture, like Rich Van Konynenburg and other researchers.

 

[MNC]

I won't discuss this again.

CFS forums are full of people who state and state hypothesis that are not proved.

I'm tired of it. Too many years of the same repetitive stories.

XMRV was a religion here and Cort Johnson crucified for remaining open to body/mind treatments or hypothesis.

Enough.

 

[dannybex]

XMRV was a religion here and Cort Johnson crucified for remaining open to body/mind treatments or hypothesis.

XMRV may have been 'a religion' to some here, but nothing compared to the cult status it developed over on the ME/CFS forums. As I think you're suggesting, at least here there was more of an even-handed discussion of both sides, although I agree that Cort (and others) were attacked for daring to question the studies.

Anyway, I hope you're finding some help and answers for whatever it is that is causing your ME/CFS.

 

[Ema]

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.

I just bought an app for my iPhone with these binaural beats....I'd never heard of them before and now I'm curious! I'm ready to go to sleep right now and try it...LOL.


I could have really used their Anger Relief program last night as well.

 

[PNR2008]

Ema, You go to sleep at 8:09pm? Wow Just adding a little levity.

 

[Esther12]

I've read a bit more about this guy and his book, and really don't think it was terribly worthwhile.

This book came out in 1996, was largely speculative and unsupported at the time, and has not held up since. I know that a lot of people are keener on experimental treatments outside of controlled trials than I am, but even so, I do not see any reason to look back at this work, and now continue to draw treatment plans from it.

I also think MNC is right about it being too easy to slip into believing one particular theory is true, when the evidence is still highly uncertain. I think that it can be difficult to live one's life while accepting the uncertainty which surrounds CFS, and this can lead to people too easily adopting and making unfounded claims.

 

[heapsreal]

I've read a bit more about this guy and his book, and really don't think it was terribly worthwhile.

This book came out in 1996, was largely speculative and unsupported at the time, and has not held up since. I know that a lot of people are keener on experimental treatments outside of controlled trials than I am, but even so, I do not see any reason to look back at this work, and now continue to draw treatment plans from it.

I also think MNC is right about it being too easy to slip into believing one particular theory is true, when the evidence is still highly uncertain. I think that it can be difficult to live one's life while accepting the uncertainty which surrounds CFS, and this can lead to people too easily adopting and making unfounded claims.

I dont know if we believe in one theory, i think many of us believe we need a few theorise as each theory only deals with one aspect of the illness. The med/supps goldstein used are now old school but maybe his theorise could be expanded upon and different meds/supps used or made to alter a function goldstein was trying to do. Myself im open to any theory and will have a look if it seems reasonable and it helps. I dont think its about favouring one particular theory but more that people want to get out of this dam illness and some can put all their eggs in one basket maybe??

 

[xrayspex]

seems like his approach had a higher chance of helping cfs/fm type people than what most docs might do. What are current docs doing that is so amazing and cutting edge? I feel like I am in the dark here, being in chronic pain and in a bad flare up of hurt as I write and having been to a no. of docs locally over the years and a few out of state but still having no great solution.....I would welcome news on what the new great meds are and how astute docs figure it out for paitents? sign me up, tell me where to go. my primary docs last great idea was savella....really? failed on prozac and all the other ssris 20 years ago why would that be different? it wasnt.

 

[xrayspex]

Also I have a theory that the chem sensitive subtype of cfs/fm usually knows quickly and on minute amount whether somehting might work or be harmful. myself and another small female friend with similar health issues both got brief great benefit from luvox and serzone to reduce pain....just a crumb size of med did it within first couple days. Interestingly they were both blackboxed, and the pain med tht helped me the most with least side effects was propoxyphene which was taken off market.............bizarre when they leave oxycontin etc on. I think most meds are available contingent in relation to best interest of pharmaceutical co.s.....I am not sure why what might good for us can't be good for them too.

i was thinking of trying to get small amount of luvox again to see if would help again, took it on and off for like a year and it greatly reduced pain and increased activity. 17 yrs ago...

 

[heapsreal]

seems like his approach had a higher chance of helping cfs/fm type people than what most docs might do. What are current docs doing that is so amazing and cutting edge? I feel like I am in the dark here, being in chronic pain and in a bad flare up of hurt as I write and having been to a no. of docs locally over the years and a few out of state but still having no great solution.....I would welcome news on what the new great meds are and how astute docs figure it out for paitents? sign me up, tell me where to go. my primary docs last great idea was savella....really? failed on prozac and all the other ssris 20 years ago why would that be different? it wasnt.

I dont think theres is anything cutting edge, i think thats our problem, it takes too long to get a drug to market and it seems that its about profit first, patient care second. Plus there just isnt the research dollars going into these things.

I think docs need to be honest or maybe they just dont know but we are going to go through patches where we just feel like crap, somethings can help abit and take the edge off. I dont think we can leave our hands in the care of a doctor, i think we need to do our own research and know what help our docs can give us.

As far as pain go's they can only really offer antidepressants and anticonvulsants like gabapentine and lyrica. They seem to scared to prescribe narcotic pain killers.

Personally i think when in pain we need to try and get alot of sleep which is easier said then done, even medicated sleep can help. General aches and pains i have found tramadol to be helpful. It sux to be in a flare but some how we need to ride through the storm. i hope u get through it soon.

cheers!!

 

[xchocoholic]

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

 

[xrayspex]

thanks heaps, yea I wasn't frustrated with your post but appreciate your ideas.

because i have spinal pain and mri shown issues with stenosis they have been willing to prescribe me pain meds but since propoxyphene went off market I cannot tolerate any other ones well, partly they are too hard to break down in my p450cythochrome detox situation is what I am guessing and that causes a dif kind of pain even if it gets rid of another.

So I am trying to find alternatives, had tried lyrica 4 yrs ago but too many side fx (on the commercial the side fx sound like fibromyalgia haha) and neurontin was helping but there is this pain i get fall/winter I am realizing that takes things to new level of headache and spine pain (sometimes its in my teeth and extremities, seems in the bones, tested neg for RA) that i havent figured out good pain solution for. topamax was trying but didnt completely work. my doc had suggeted dextromethorphan when propox when off the market and i just tried that out of desperation last weekeand and have to say it finally took the edge off a killer head/pain attack, it had the guifanesen in there too, ya get it o-t-c and I just took childrens dose and in past i didnt like guif but i didnt notice anything bad from this but rather it subdued an awful pain attack in head/neck. It would be nice to figure out solutions tht dont involve docs, i hate having to go thru them for "help" because always an edge to it of their impatience as these problems dont fit neatly at all into faux evidence based managed care circus.

I think tho over time it wouldnt surprise me if they make supplments regulated more and thru prescription and maybe get rid of some o-t-c stuff cus some desperate teens and adults abuse it. Plus they want to make new products with patents and force people to have to switch, just like we switch fashion evey year. capitalism/corportism baby. thing is for chem sensitive people its really unfortuante because so many new gneration meds are tricker to break down in p450 system. these are some reasons i dont want t leave it to the "market" to figure out our tx i wish the govmt and pharms had to collaborate for whats in people's best interest for health care, i heard horror stories about ampligen and stock market games that happend 12 yrs agoish, forgt what u call it when they bet against something to make money.

 

[heapsreal]

thanks heaps, yea I wasn't frustrated with your post but appreciate your ideas.

because i have spinal pain and mri shown issues with stenosis they have been willing to prescribe me pain meds but since propoxyphene went off market I cannot tolerate any other ones well, partly they are too hard to break down in my p450cythochrome detox situation is what I am guessing and that causes a dif kind of pain even if it gets rid of another.

So I am trying to find alternatives, had tried lyrica 4 yrs ago but too many side fx (on the commercial the side fx sound like fibromyalgia haha) and neurontin was helping but there is this pain i get fall/winter I am realizing that takes things to new level of headache and spine pain (sometimes its in my teeth and extremities, seems in the bones, tested neg for RA) that i havent figured out good pain solution for. topamax was trying but didnt completely work. my doc had suggeted dextromethorphan when propox when off the market and i just tried that out of desperation last weekeand and have to say it finally took the edge off a killer head/pain attack, it had the guifanesen in there too, ya get it o-t-c and I just took childrens dose and in past i didnt like guif but i didnt notice anything bad from this but rather it subdued an awful pain attack in head/neck. It would be nice to figure out solutions tht dont involve docs, i hate having to go thru them for "help" because always an edge to it of their impatience as these problems dont fit neatly at all into faux evidence based managed care circus.

I think tho over time it wouldnt surprise me if they make supplments regulated more and thru prescription and maybe get rid of some o-t-c stuff cus some desperate teens and adults abuse it. Plus they want to make new products with patents and force people to have to switch, just like we switch fashion evey year. capitalism/corportism baby. thing is for chem sensitive people its really unfortuante because so many new gneration meds are tricker to break down in p450 system. these are some reasons i dont want t leave it to the "market" to figure out our tx i wish the govmt and pharms had to collaborate for whats in people's best interest for health care, i heard horror stories about ampligen and stock market games that happend 12 yrs agoish, forgt what u call it when they bet against something to make money.

I reckon when in a flare and epidural would be great, LOL