Did Dr. Goldstein always test the different samples with the gel rubbed on the forearm?
Almost all of his tests were done directly with pills. The gel form was typically used only when oral administration either didn't work at all for a given drug, or when the gel form simply worked a lot faster. Dr. Goldstein's decision tree can be found on page 458 of
Betrayal by the Brain;
@MNC kindly reproduced an early version of it in
this post (with some useful added commentary). The drugs in the center column are the main profiling drugs, and are used to determine which types of drugs the patient is most likely to respond to. Of these, in the book version, amantadine, ketamine, lidocaine, Neurontin, and guaifenesin are shown to be used externally in a PLO gel. Neurontin (gabapentin) and guaifenesin (extended-release Mucinex) are also available in pill form, and this is what Dr. Goldstein used for long-term treatments. For the others, IV administration was required, and Dr. Goldstein often administered guaifenesin by IV as well.
For the ones that he did.............how was that done?
I don't think that Dr. Goldstein specifically says how these were prepared, but considering that he used all of these frequently, I would imagine that he relied on a compounding pharmacy, which could produce these gels easily. He definitely knew enough pharmacology to try these out on his own, along with various nasal sprays and eyedrops, as he details on pages 54-55 of
Tuning the Brain.
Where do you get these drugs?
This was detailed in an earlier post, but since this thread is getting a bit long, I'll repeat the information here:
By the way, in terms of cheaply trying out several of Dr Goldstein's best drugs for treating ME/CFS,
United Pharmacies (UK website
here) is a very good place to buy these drugs, because in most cases this pharmacy sells drugs in small units of just 10 pills. Often just 10 pills can be enough to work out whether a particular drug has benefits for you or not, or whether it has side effects that make that particular drug unviable for you.
They're a great pharmacy, and they ship to every state in the U.S. except Oregon - which happens to be where I live. (Their agent is apparently located here.) Three other excellent pharmacies that I've used a lot are
Brandmedicines.com,
Goldpharma, and
Mimaki Family Pharmacy. The last one often has drugs that no one else has, while at the same time it often doesn't carry the more common medications.
Also very good is
AllDayChemist.com. Some people have reported receiving spam from various places after ordering from this pharmacy, so it might be a good idea to use a disposable email address if you order from them.
Ordering from a reputable pharmacy such as these is key. With pharmacies of unknown reputation, you never know if you'll get anything at all, or if you do, if it will be real or counterfeit. As you might expect, counterfeit drugs can be extremely dangerous. And of course anyone using prescription medications not under the supervision of a doctor had better know as much as a well-informed doctor about the medication, its side effects and what to do if they occur, and its drug interactions, or disastrous results could possibly ensue.
Although it is technically illegal to import any prescription drugs into the U.S. from any other country, the U.S. government currently permits people to import a 90 day supply of prescription drugs without a problem. I have never had a shipment stopped by Customs, and most of them even name the drug on the package. However, the ban on scheduled drugs (e.g., benzodiazepines) is enforced. The only scheduled drug that Dr. Goldstein uses regularly is ketamine, though he finds it extremely useful. Due to the law, there are no reputable sources of ketamine among these pharmacies. Web sites that claim to sell ketamine are usually scams. For both health and legal reasons, I would strongly advise everyone to avoid even trying to get ketamine without a valid prescription, and to use a licensed pharmacy in their own country.
@zzz @HipI've long been interested in trying to find a way to duplicate Goldstein's protocol.
Fortunately, it is possible to do so using just Dr. Goldstein's books, as one of the main purposes of his writing them was to allow any physician to use his protocol. The deeper technical material gives scientifically-minded readers enough of an understanding of neurosomatic medicine in general (the branch of medicine founded by Dr. Goldstein) to extend the practice of neurosomatic medicine beyond the specific drugs and protocols that Dr. Goldstein used. As I have indicated, I have found his protocols to be immensely helpful in treating my illness. The books benefit tremendously from a second reading, as I would describe them as being written in a somewhat holographic style; each part assumes some knowledge of all the rest. This can make a first reading rather daunting.
I'm a patient of Byron Hyde (who is not a treating physician) and he is good friends with Dr. Goldstein and has long sung his praises of a doctor who was way ahead of his time and knew more about "chemopharmacology" (as he put it) than anyone else.
I was unaware that Dr. Hyde and Dr. Goldstein were good friends. Dr. Hyde certainly has a solid reputation in the ME/CFS community, and an endorsement from him certainly means a lot.
I'm just so brain fogged and on an energy decline that being able to navigate this is quite tough at the moment, but I'm slowly inching more towards commencement of this plan.
I wonder, did any or many of the patients that Dr. Goldstein successfully treated suffer from severe cognitive deficits (very poor memory, heavy heavy fog, very slow processing, scattered and slow speech, loss of personality, autistic like features) and related symptoms?
Oh yes, many of them. He includes the case reports of many of these in both
Betrayal by the Brain and
Tuning the Brain. The reports he includes describe many miraculous recoveries, with people able to return to work.
Also, I have associated hyper mobility issues and a host of other weird dry/red skin problems and allergies and reactions etc. I'm curious if other patients who were helped by him also had these issues as well?
For the hypermobility and skin problems, it's not clear. I don't recall cases of these being described in his books. But he also indicates in the Forward to
Tuning the Brain that there is much, much more than he has put in his books. At one point, he says, "I shall more fully describe the actual treatment of neurosomatic disorders in my next book,
Brain Static: Case Studies in Neurosomatic Medicine." Unfortunately, this book was never published, and it appears that Dr. Goldstein's illness has prevented its completion.
As for allergies and reactions, Dr. Goldstein's approach is extremely effective, as I can testify from personal experience. He identified the cause of central sensitivity, which is still being debated today in the rest of medicine, and from his writings, he made clear which treatments work for this. Since I have had tremendous hypersensitivity problems, I have tried these treatments, and sure enough, they work, although they take time. Most of page 367 in
Tuning the Brain is devoted to explaining this mechanism, and once the mechanism is understood, the treatments become evident.
Oh I've also had life long IBS which is directly related to my nervous system and response to stimuli like chemicals, social interaction, anticipation etc. as well as diet.
Dr. Goldstein devotes a whole chapter to the treatment of IBS in
Betrayal by the Brain. Hypersensitivities, which are extremely common in ME/CFS, are covered in the section above. A large proportion of Dr. Goldstein's drugs worked on hypersensitivities, either directly or indirectly. For example, on page 93 of
Betrayal by the Brain, he describes a woman with fibromyalgia and lupus who was treated in his office for the first time with a combination of four medications:
She felt more energetic, her tender points were gone, and she had much more mental clarity. I asked her to take walk to test her exercise intolerance and when she returned she stated that for the first time in seventeen years she could walk in the sun without symptoms of photosensitivity.
Not bad for a first visit! But Dr. Goldstein continues:
Over the next three months all signs of lupus resolved and her anti-ds DNA test became negative.
I discuss this case in a little more detail in
this post.
I guess what I'm trying to ask is if your familiar with success of his protocol on addressing patients with a multitude of symptoms from almost of every body system?
Well, these were exactly the people who came to see him - the cases that were hardest to treat, the people who had been to often dozens of doctors with no results, including to many specialists. In his time, Dr. Goldstein was known as "the end of the line". He was the doctor you went to when everyone else had failed. People who have not read his books or don't understand his work often think that he used a purely neurological approach. But if so, he would have been a neurologist, and of course that approach is quite limited. Instead, he invented the field of neurosomatic medicine, which uses an integrated neuroendocrineimmune approach, as these three systems actually are tightly integrated in the body. But as you can tell from the titles of his later books, he saw the core symptoms originating from the brain. He had great success with this approach; by the time
Tuning the Brain was first printed, shortly before his retirement, he estimated that he could help all but two three percent of those patients who came to see him become asymptomatic, or nearly so. As he treated 20,000 patients during his career, this was a lot of people, although his success rate only began to approach what I described in the mid 1990s.
To give a sense of the power of his treatments, I'll include a brief quote from the bottom of page 73 in
Tuning the Brain:
Usually, in cases like this, I perform what I term a "resurrection". Mrs. Jones arrives by ambulance in a hospital bed where she has been confined for months or years (take your pick). That day will be, I'm sure, my only crack at her. I can usually get Mrs. Jones ambulatory, often with intravenous medications, by the end of the day, so that she can walk into my office on her next visit.
Who today can do this?
Just an aside, I heard from Dr. Hyde today via email that Dr. Goldstein is quite ill and being taken care of by his wife. This was sad to hear as the more I learn of him the more respect and admiration I have for him as he seemed relentless in the pursuit of minimizing patient suffering from this hideous illness
Yes, unfortunately, I have heard this as well. And my respect for him continues to increase with time, too. Part I of
Tuning the Brain is autobiographical and very revealing; I think that it's worth the price of the book alone. It closes with a haunting quote from his wife:
In summary, Jay is a good man who has given his life to his patients for little reward. I truly hope that the contributions he has made to better the lives of patients will not be forgotten once he has gone.
This was written in 2003.
Oh one more thing. I remember reading that Dr Goldstein once said back when rTMS (transcranial magnetic stimulation) was first emerging that he believed this therapy held great promise for neurosomatic disorders in assisting the brain to reset. But this was early on before the technology really emerged by which point he was retired. rTMS has also interested me but it also seems like if done wrong things can really mess up. Curious if you have any further insight to this as well?
I haven't heard of any areas where this has caused significant problems, although my knowledge of this field is minimal. However, I think that this field is still in its infancy, and that there is much that can potentially be discovered in this area.
