I've been absent from this thread for far too long. First of all, I would like to extend my deep gratitude to
@Thomas, both for calling up Dr. Goldstein and relaying our gratitude for his work, and also for reporting so extensively to us on his conversation. I'll continue from that post...
f there are any really important or specific questions that you think should be asked that could drastically assist in helping us get better quicker by assisting in navigating through his protocol, let me know and I will try and call him again.
I sort of feel bad just ringing him up especially since I doubt he'll remember our conversation.
I understand that Dr. Goldstein is not in a position to talk much, and in his condition we certainly don't want to put a burden on him. But there are two things I noticed that I think are relevant here. First, Dr. Hyde encourage you to call Dr. Goldstein in the first place, so as his close friend, it appears that Dr. Hyde thought he would appreciate at least some occasional contact. And second, your call really did cheer him up. It's one of the rare occasions he gets these days to "talk shop", and to be told how much his work is appreciated is the type of feedback that is really helpful for him.
On the other hand, your description of his current state makes it clear that he is not up for intellectually demanding conversations, and we obviously need to respect that.
As for remembering your conversation, I wouldn't worry about that. I expect that he's rather used to memory lapses now. And if he's forgotten your conversation completely, you have another opportunity to tell him how much the community appreciates his work.
That being said, I can think of a couple of things that I think it would be very helpful to ask him, and for which the answers should be quite straightforward. As for navigating through his protocol, I have found through my own experience that that simply becomes clearer with time, and with additional study of his existing books. I personally have no questions in that regard.
The biggest question I have, and the one I have been wondering about ever since I read
Tuning the Brain, is whether or not any progress at all was made on what was supposed to be his next book (
Brain Static: Case Studies in Neurosomatic Medicine). I think that the title alone fills any Goldstein admirer with longing. From what I have been able to piece together, it appears that his illness became fairly overwhelming shortly after the publication of
Tuning the Brain. For that reason, it is very possible that nothing beyond that book may have been written. But if anything at all exists from the preliminary work on
Brain Static, I think it would be enormously helpful for those of us who are trying to put his work into practice, or merely to understand it. Similarly, if he has any unpublished articles, or even drafts of such articles, those would be extremely useful as well. I would think that if such material exists, Dr. Goldstein would want very much to get it into the hands of people who would use it well.
@Thomas, if you could ask him if any such material exists, and if he would be willing to give us access to it, I think that that would be very helpful indeed. Given Dr. Goldstein's current state, this would undoubtedly require cooperation from someone such as his wife, or possibly even his son. Dr. Hyde might also know the answers to some of these questions.
The second main question I would have is a practical one, but one that affects many people with ME/CFS. Did Dr. Goldstein find the IV lidocaine treatment to be safe and effective for people with mast cell disorders? He writes about these disorders in
Tuning the Brain, and as these disorders are fairly common in people with ME/CFS, I imagine that he encountered quite a few of them. The conventional wisdom seems to be that lidocaine is contraindicated in people with mast cell disorders, but this seems to be contradicted by what Dr. Goldstein writes about lidocaine in his books.
Those are the only questions I would have for him. In addition to conveying to him our gratitude for his work, as you have already done, you could also let him know that there are people here who are working hard for the adoption of his treatments by doctors, and who are having some success. I think that he would appreciate that.
I should have confirmed the ressurection cocktail, discussed NE in greater detail, and ask what his favourite drugs were right before retirement etc.
For two of these questions, I think I can give you the answers, especially since
Tuning the Brain was written directly before his retirement. I researched the ingredients of the resurrection cocktail quite extensively from various sources, and they were quite consistent. The individual ingredients and their dosing were described in detail in his last two books.
As for his favorite medications, on page 315 of
Tuning the Brain he lists the four medications that he feels help the most patients the fastest:
Currently, if I had to list the four medications that help the most patients the fastest, they would be (1) ketamine IV, p.o., gel, nose sprays, and eyedrops, (2) lidocaine IV or gel, (3) amantadine IV 200 mg to 400 mg, (4) and guaifenisin 250 mg slow IV infusion. Several patients take one spray of 1:1 ketamine three to four times a day. Each spray is about 0.5 mg. This dose is very low and very effective. Low doses of ketamine are nontoxic, and they are rarely abused. No physical dependence is associated with ketamine.
From the last paragraph on page 319:
A list of effective neurosomatic medications would include ketamine, lidocaine, gabapentin (the best oral medication), lamotrigine, baclofen, IV amantadine, IV ascorbate, IV or subcutaneous TRH, and IV or p.o. guaifenesin. Then would come (in alphabetical order) Adderall, adenosine nasal spay, acetylcholinesterase inhibitors (for those who respond better to NMDA agonists), dipyridamole (not all those who respond to adenosine nasal spray respond to dipyridamole, but many do), methadone, modafinil [Provigil], naphazoline eyedrops, nimodipine, oseltamivir, oxytocin, ranitidine [Zantac], reboxetine [Strattera is similar], relaxin [no longer available], TRH (IV if it lasts a month or more, subcutaneous if it does not), Ultram, and ziprasidone (Geodon). I only recommend physicians trying them randomly like this if they have no idea what receptor profiling is and do not think they are capable of learning it. Doctors will still help the majority of their patients by making a list of these medications and throwing darts at it. I am at the point at which I expect new patients to become asymptomatic, or virtually so, and am surprised when they do not.
This first list of eight and second list of sixteen medications form what are essentially Dr. Goldstein's top two tiers of medications. The third tier would be the
treatment chart on page 458 of
Tuning the Brain, while the fourth tier would be the list of medications that follows it. The fourth tier is a superset of the previous three tiers, and appears to contain all the medications that Dr. Goldstein used at the time of publication of
Tuning the Brain. The third tier (the chart) contains most of the medications of the first two tiers, as well as many others.
I am home now and really wanted to reply in more detail and am excited to hear what
@zzz thinks about this phone call!
I'm sorry for the long delay in my reply, but I hope you've found it helpful.
Good for you for calling him even though you were not feeling well and it really is a once in a life-time opportunity.
It certainly is! Once again,
@Thomas, I'm really happy that you were able to convey our appreciation to him.
Good for you for cheering him up! I am sure you made his day and I don't think he knows that people like us are reading his books and discussing his theories. It is too bad that current researchers are not aware or interested in his work. Whether they agree with it or not, there is such a wealth of knowledge base that he created which is not being used.
It's up to us to make them more aware of his work. If we don't, who will?
As for the trial and error nature of his treatments...
I would say IMO that is the case with ALL ME/CFS treatments b/c the patients divide into all these different sub-groups that we as of yet do not understand.
I think that that is very true indeed. There is no surefire treatment for ME/CFS that makes everyone better.
I tend to agree with that too and the drugs that initially gave me horrific reactions, have never worked for me. Whereas there are some that are initially benign but may take a few weeks to feel the positive effects.
This is exactly my experience as well.
Question: Why does Nimodipine at my pharmacy cost around $550 for 120 30mg tablets but on brandmedicines.com it only costs around $40 for 100 30mg tablets? I realize the one online is from a foreign country but the price difference makes me wonder if the online version is authentic?
I think that this question has largely been answered, but I can assure you that Brandmedicines.com is an extremely reliable online pharmacy. As their name states, they sell only medicines made by recognized brand name manufacturers, although these manufacturers are often located in Europe.
@zzz where did you source the Hydergine? I can't seem to find a reliable online vendor. I see antiaging-systems.com has "Hy Pro", but i'm not sure how reliable they are. Thanks
The best and cheapest source for Hydergine is
Mimaki Family Pharmacy. They currently sell both the 1 mg and 2 mg size of the tablets. The 1 mg size can be either swallowed or taken sublingually.
I don't think he ever mentioned mementine, but sounds like a drug that was in trials during the writing of his last book.
Yes, it was, but he wrote about it anyway. You can find information on Memantine on pages 148 and 203.
How long do you take a medication before deciding whether it's doing anything or not? Sometimes I fear I give up on a med too quickly like after a dose or two. Sorry for the questions
Hydergine took three months to have any effect at all for me. But when it did, wow! For me, I find it a bit tricky to balance the dose between no effect at all and too much energy.
The first time it kicked in, I also had a mild allergic reaction to it. But I backed off the dose, and have never had that problem in the six months I've been taking it since then.
It appears that Dr. Goldstein's treatment philosophies and overall explanations of the mechanisms of ME/CFS are obviously way ahead of his time. But it seems that all of his case studies rarely reflected patients with primarily severe cognitive dysfunction although I could be wrong.
Many of the case studies mention cognitive dysfunction, although it's often part of a whole list of symptoms that were addressed. However, in some cases, cognitive dysfunction figures prominently. For example, there is the case report on page 44 of
Betrayal by the Brain. The case report on page 61 begins:
A 44-year-old white male had felt fatigued as long as he could remember, and had self-described "brain fog" that impaired his ability to work.
In the case report on page 63, he doesn't mention cognitive dysfunction specifically, but he makes a rare statement about dysautonomia, which he treated frequently. Considering how much of a problem that is among us, and that the issue has recently come up in this thread, I'll include the quote:
Treating dysautonomia as a primary disorder is not usually a successful strategy, although dysautonomia, which includes fluctuating low blood pressure, is a common finding in neurosomatic disorders.
He then lists
Chronic Fatigue Syndromes: The Limbic Hypothesis as one of his references.
There's a rather striking case of cognitive dysfunction listed on page 79, which is attached to this post.
And on page 127:
A 16-year-old Caucasian female consulted me for symptoms of chronic fatigue syndrome experienced for two years, which resulted in her being homebound. She was too cognitively impaired to receive home schooling, although she had been an "A" student prior to her illness Her mother and a 14-year-old sister had milder forms of the illness. She initially had excellent responses to ranitidine [Zantac], naphazoline, nimodipine, oxytocin, and several antidepressants, but the benefit was always short-lived. After taking one gram of inositol she felt considerably better and was encouraged to resume agents to which she had developed tolerance. As long as she continued to take inositol 1 gm QID , these medications were again effective. She has returned to high school and will be graduating shortly.
There are many others.
I wish he would have been more clear on separating ME and CFS from FM.
or even subtype patients into meeting certain criteria or not. I.e CCC versus Fukuda etc. know what I mean?
Although Dr. Goldstein separated out the pathophysiology of CFS and FM into different chapters in
Betrayal by the Brain, he found that the treatments for them overlapped almost entirely, which is why most of the treatments tend to be presented in a single section in most of his last two books.
As for the various subtypes, the CCC and ICC definitions did not really exist at the time of the writing of his books. Although he certainly recognized that there were different subtypes, and elaborated on this in numerous places, he saw them all as the manifestations of the same basic dysfunction. In his books, the different subtypes essentially manifested as the different types of treatments that worked for different people.
I dunno, just an observation. I still find both of his books that I own fascinating and I'd love to get my hands on his "Limbic Hypothesis" book.
You can find both new and used copies on Amazon.com. I think it's well worth the modest investment.
I've been absent from this thread for far too long. First of all, I would like to extend my deep gratitude to
@Thomas, both for calling up Dr. Goldstein and relaying our gratitude for his work, and also for reporting so extensively to us on his conversation. I'll continue from that post...
f there are any really important or specific questions that you think should be asked that could drastically assist in helping us get better quicker by assisting in navigating through his protocol, let me know and I will try and call him again.
I sort of feel bad just ringing him up especially since I doubt he'll remember our conversation.
I understand that Dr. Goldstein is not in a position to talk much, and in his condition we certainly don't want to put a burden on him. But there are two things I noticed that I think are relevant here. First, Dr. Hyde encourage you to call Dr. Goldstein in the first place, so as his close friend, it appears that Dr. Hyde thought he would appreciate at least some occasional contact. And second, your call really did cheer him up. It's one of the rare occasions he gets these days to "talk shop", and to be told how much his work is appreciated is the type of feedback that is really helpful for him.
On the other hand, your description of his current state makes it clear that he is not up for intellectually demanding conversations, and we obviously need to respect that.
As for remembering your conversation, I wouldn't worry about that. I expect that he's rather used to that now. And if he's forgotten your conversation completely, you have another opportunity to tell him how much the community appreciates his work.
That being said, I can think of a couple of things that I think it would be very helpful to ask him, and for which the answers should be quite straightforward. As for navigating through his protocol, I have found through my own experience that that simply becomes clearer with time, and with additional study of his existing books. I personally have no questions in that regard.
The biggest question I have, and the one I have been wondering about ever since I read
Tuning the Brain, is whether or not any progress at all was made on what was supposed to be his next book (
Brain Static: Case Studies in Neurosomatic Medicine). I think that the title alone fills any Goldstein admirer with longing. From what I have been able to piece together, it appears that his illness became fairly overwhelming shortly after the publication of
Tuning the Brain. For that reason, it is very possible that nothing beyond that book may have been written. But if anything at all exists from the preliminary work on
Brain Static, I think it would be enormously helpful for those of us who are trying to put his work into practice. Similarly, if he has any unpublished articles, or even drafts of such articles, those would be extremely useful as well. I would think that if such material exists, Dr. Goldstein would want very much to get it into the hands of people who would use it well.
@Thomas, if you could ask him if any such material exists, and if he would be willing to give us access to it, I think that that would be very helpful indeed. Given Dr. Goldstein's current state, this would undoubtedly require cooperation from someone such as his wife, or possibly even his son. Dr. Hyde might also know the answers to some of these questions.
The second main question I would have is a practical one, but one that affects many people with ME/CFS. Did Dr. Goldstein find the IV lidocaine treatment to be safe and effective for people with mast cell disorders? He writes about these disorders in
Tuning the Brain, and as these disorders are fairly common in people with ME/CFS, I imagine that he encountered quite a few of them. The conventional wisdom seems to be that lidocaine is contraindicated in people with mast cell disorders, but this seems to be contradicted by what Dr. Goldstein writes about lidocaine in his books.
Those are the only questions I would have for him. In addition to conveying to him our gratitude for his work, as you have already done, you could also let him know that there are people here who are working hard for the adoption of his treatments by doctors, and who are having some success. I think that he would appreciate that.
I should have confirmed the ressurection cocktail, discussed NE in greater detail, and ask what his favourite drugs were right before retirement etc.
For two of these questions, I think I can give you the answers, especially since
Tuning the Brain was written directly before his retirement. I researched the ingredients of the resurrection cocktail quite extensively from various sources, and they were quite consistent. The individual ingredients and their dosing were described in detail in his last two books.
As for his favorite medications, on page 315 of
Tuning the Brain he lists the four medications that he feels help the most patients the fastest:
Currently, if I had to list the four medications that help the most patients the fastest, they would be (1) ketamine IV, p.o., gel, nose sprays, and eyedrops, (2) lidocaine IV or gel, (3) amantadine IV 200 mg to 400 mg, (4) and guaifenisin 250 mg slow IV infusion. Several patients take one spray of 1:1 ketamine three to four times a day. Each spray is about 0.5 mg. This dose is very low and very effective. Low doses of ketamine are nontoxic, and they are rarely abused. No physical dependence is associated with ketamine.
From the last paragraph on page 319:
A list of effective neurosomatic medications would include ketamine, lidocaine, gabapentin (the best oral medication), lamotrigine, baclofen, IV amantadine, IV ascorbate, IV or subcutaneous TRH, and IV or p.o. guaifenesin. Then would come (in alphabetical order) Adderall, adenosine nasal spay, acetylcholinesterase inhibitors (for those who respond better to NMDA agonists), dipyridamole (not all those who respond to adenosine nasal spray respond to dipyridamole, but many do), methadone, modafinil [Provigil], naphazoline eyedrops, nimodipine, oseltamivir, oxytocin, ranitidine [Zantac], reboxetine [Strattera is similar], relaxin [no longer available], TRH (IV if it lasts a month or more, subcutaneous if it does not), Ultram, and ziprasidone (Geodon). I only recommend physicians trying them randomly like this if they have no idea what receptor profiling is and do not think they are capable of learning it. Doctors will still help the majority of their patients by making a list of these medications and throwing darts at it. I am at the point at which I expect new patients to become asymptomatic, or virtually so, and am surprised when they do not.
This first list of eight and second list of sixteen medications form what are essentially Dr. Goldstein's top two tiers of medications. The third tier would be the
treatment chart on page 458 of
Tuning the Brain, while the fourth tier would be the list of medications that follows it. The fourth tier is a superset of the previous three tiers, and appears to contain all the medications that Dr. Goldstein used at the time of publication of
Tuning the Brain. The third tier (the chart) contains most of the medications of the first two tiers, as well as many others.
I am home now and really wanted to reply in more detail and am excited to hear what
@zzz thinks about this phone call!
I'm sorry for the long delay in my reply, but I hope you've found it helpful.
Good for you for calling him even though you were not feeling well and it really is a once in a life-time opportunity.
It certainly is! Once again, I'm really happy that you were able to convey our appreciation to him.
Good for you for cheering him up! I am sure you made his day and I don't think he knows that people like us are reading his books and discussing his theories. It is too bad that current researchers are not aware or interested in his work. Whether they agree with it or not, there is such a wealth of knowledge base that he created which is not being used.
It's up to us to make them more aware of his work. If we don't, who will?
As for the trial and error nature of his treatments...
I would say IMO that is the case with ALL ME/CFS treatments b/c the patients divide into all these different sub-groups that we as of yet do not understand.
I think that that is very true indeed. There is no surefire treatment for ME/CFS that makes everyone better.
I tend to agree with that too and the drugs that initially gave me horrific reactions, have never worked for me. Whereas there are some that are initially benign but may take a few weeks to feel the positive effects.
This is exactly my experience as well.
Question: Why does Nimodipine at my pharmacy cost around $550 for 120 30mg tablets but on brandmedicines.com it only costs around $40 for 100 30mg tablets? I realize the one online is from a foreign country but the price difference makes me wonder if the online version is authentic?
I think that this question has largely been answered, but I can assure you that Brandmedicines.com is an extremely reliable online pharmacy. As their name states, they sell only medicines made by recognized brand name manufacturers, although these manufacturers are often located in Europe.
@zzz where did you source the Hydergine? I can't seem to find a reliable online vendor. I see antiaging-systems.com has "Hy Pro", but i'm not sure how reliable they are. Thanks
The best and cheapest source for Hydergine is
Mimaki Family Pharmacy. They currently sell both the 1 mg and 2 mg size of the tablets. The 1 mg size can be either swallowed or taken sublingually.
I don't think he ever mentioned mementine, but sounds like a drug that was in trials during the writing of his last book.
Yes, it was, but he wrote about it anyway. You can find information on it on pages 148 and 203.
How long do you take a medication before deciding whether it's doing anything or not? Sometimes I fear I give up on a med too quickly like after a dose or two. Sorry for the questions
Hydergine took three months to have any effect at all for me. But when it did, wow! For me, I find it a bit tricky to balance the dose between no effect at all and too much energy.
The first time it kicked in, I also had a mild allergic reaction to it. But I backed off the dose, and have never had that problem in the six months I've been taking it since then.
It appears that Dr. Goldstein's treatment philosophies and overall explanations of the mechanisms of ME/CFS are obviously way ahead of his time. But it seems that all of his case studies rarely reflected patients with primarily severe cognitive dysfunction although I could be wrong.
Many of the case studies mention cognitive dysfunction, although it's often part of a whole list of symptoms that were addressed. However, in some cases, cognitive dysfunction figures prominently. For example, there is the case report on page 44 of
Betrayal by the Brain. The case report on page 61 begins:
A 44-year-old white male had felt fatigued as long as he could remember, and had self-described "brain fog" that impaired his ability to work.
In the case report on page 63, he doesn't mention cognitive dysfunction specifically, but he makes a rare statement about dysautonomia, which he treated frequently. Considering how much of a problem that is among us, and that the issue has recently come up in this thread, I'll include the quote:
Treating dysautonomia as a primary disorder is not usually a successful strategy, although dysautonomia, which includes fluctuating low blood pressure, is a common finding in neurosomatic disorders.
He then lists
Chronic Fatigue Syndromes: The Limbic Hypothesis as one of his references.
There's a rather striking case of cognitive dysfunction listed on page 79, which I've attached to this post.
On page 127:
A 16-year-old Caucasian female consulted me for symptoms of chronic fatigue syndrome experienced for two years, which resulted in her being homebound. She was too cognitively impaired to receive home schooling, although she had been an "A" student prior to her illness Her mother and a 14-year-old sister had milder forms of the illness. She initially had excellent responses to ranitidine [Zantac], naphazoline, nimodipine, oxytocin, and several antidepressants, but the benefit was always short-lived. After taking one gram of inositol she felt considerably better and was encouraged to resume agents to which she had developed tolerance. As long as she continued to take inositol 1 gm QID , these medications were again effective. She has returned to high school and will be graduating shortly.
There are many others.
I wish he would have been more clear on separating ME and CFS from FM.
or even subtype patients into meeting certain criteria or not. I.e CCC versus Fukuda etc. know what I mean?
Although Dr. Goldstein separated out the pathophysiology of CFS and FM into different chapters in
Betrayal by the Brain, he found that the treatments for them overlapped almost entirely, which is why most of the treatments tend to be presented in a single section in most of his last two books.
As for the various subtypes, the CCC and ICC definitions did not really exist at the time of the writing of his books. Although he certainly recognized that there were different subtypes, and elaborated on this in numerous places, he saw them all as the manifestations of the same basic dysfunction. In his books, the different subtypes essentially manifested as the different types of treatments that worked for different people.
I dunno, just an observation. I still find both of his books that I own fascinating and I'd love to get my hands on his "Limbic Hypothesis" book.
You can find both new and used copies on
Amazon.com. I think it's well worth the modest investment.
