Dr. Jay Goldstein's Rapid Remission ME/CFS Treatments.

Wayne

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Hi @WoolPippi,

I seem to remember my POTS improved somewhat after I had the Atlas Profilax done. Did you by any chance notice anything along those lines after your AP? @Gingergrrl, I seem to recall you have significant stuff going on in your neck; have you given any thought to this contributing to your low BP.
 

WoolPippi

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Hi @WoolPippi,

I seem to remember my POTS improved somewhat after I had the Atlas Profilax done. Did you by any chance notice anything along those lines after your AP? @Gingergrrl, I seem to recall you have significant stuff going on in your neck; have you given any thought to this contributing to your low BP.
Yes I did and it stayed. The urge and ability to take a little walk every day dissapeared a year later however, after some life stress and a consequent relapse. But the POTS improvement was permanent.

Funny you tag me in this thread, I bought both books by dr. Goldstein yesterday. My version of ME is tightly linked to the CNS and brain chemistry and I'm looking forward to poking it a bit with drugs. Poking with hormones and Gupta-technique have already given instant results in homeostasis, indicating that my limbic system and nerve signalling are involved.

And my brain chemistry is ridiculously sensitive... Up to the comical point.
 

Gingergrrl

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Hi @WoolPippi,

I seem to remember my POTS improved somewhat after I had the Atlas Profilax done. Did you by any chance notice anything along those lines after your AP? @Gingergrrl, I seem to recall you have significant stuff going on in your neck; have you given any thought to this contributing to your low BP.
@Wayne I am not familiar with this technique for POTS or neck pain. Is there a website or link? My systolic BP only in the 80's today and my brain seems hell bent on keeping it at a low set point no matter what I try!
 
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Hello and thanks to ZZZ for his outstanding contribution.

I went through the thread, and after thinking about it for a while, decided that the mechanism for Nitroglycerin medicine to successfully cure a CFS patient for 5 years, must be something far more than brain or nerve system improvement, after all, the multitude of viruses [Herpes family] we deal with, plus our immune system, are quite separated from the function of the nervous system. The immune system has many autonomous functions which cause it to perform its function without nervous system interaction.

So i thought about the possibility that the Nitroglycerin tablet or its reaction compounds in the body [Nitric Oxide], may have a very powerful inhibitory and cytotoxic effect on our CFS viral infections: EBV, CMV,HHIV-6, and maybe even an effect on various Mycoplasma bacteria. I searched for a direct link between Iscordil and anti-viral effects, but practically research zero was found.

Next i searched Nitric Oxide [a major byproduct of Iscordil in the human body] as an antiviral agent. We hit a Goldmine here......

Nitric Oxide has a massive effect on a very large variety of viruses; in one invitro test, a 1,800 fold reduction in HSV-1 viral concentration occurred . This is great, and as is well known the herpes family viruses do share many common susceptibilities to specific antiviral agents.

http://www.jci.org/articles/view/116479/version/1/pdf/render
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC109964/pdf/jv004547.pdf
http://www.cell.com/immunity/abstract/S1074-7613(00)80003-5
http://www.novantherapeutics.com/files/4214/1026/8096/ICAAC2014_28Aug14.pdf
https://www.lerner.ccf.org/pathobio/erzurum/documents/Xu2006FreeRadBioMed.pdf

This should now guide us to a new path in successfully eradicating this disease that the misguided medical establishment blindly labeled as Chronic Fatigue Syndrome, but I call it: Chronic Infection Syndrome.

Abdulrahman
 
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Patent filing for the use of nitric oxide with or without B-cell depletion in CFS


Patent filing by Olav Mella and Øystein Fluge at Haukeland University Hospital

NO's function in the body:

"Nitric oxide (NO) is a neurotransmitter with impact on cognitive function, and with important effects on vasodilalation thus regulating blood flow, also regulating smooth muscle tone in gastrointestinal and urogenital tracts, affecting platelet aggregation and cardiac contractility, and also skeletal muscle. NO has important functions in adequate recovery sleep, and affects sensory hypersensitivity through voltage-gated potassium channels. Thus, a compromised NO system may add to many characteristic symptoms in ME/CFS patients such as cognitive disturbances, sleep problems, and hypersensitivity to stimuli such as light, noise, smell, touch, and pain. Also, disturbance in NO metabolism may explain the lower anaerobic threshold seen in ME/CFS patients, and the inhibited mitochondrial function. Several studies have shown increased lactate in the cerebrospinal fluid in ME/CFS patients (Shungu DC et al., 2012, NMR Biomed 25:1073-1087) and a strong correlation between brainstem grey matter volume and pulse pressure suggested an impaired cerebrovascular autoregulation, findings that may be ascribed to dysregulated nitric oxide. Nitric oxide also impacts on immune cells."

Experimental treatment with NO:

"In particular, the present inventors recognized that an immediate relief after administration of an NO donor can be observed. In contrast to medication administered so far for treatment of CFS, which are characterized by a remarkable lag time of treatment success, as described for example for the treatment with Rituximab or Methotrexate, see e.g. WO 2009/083602. Thus, the administration of a NO donor surprisingly allow a treatment of CFS patients for immediate relief of symptoms without any delay as described for e.g. a B-cell depleting agent, like Rituximab, before. An alternative strategy was applied, using supplement with relatively high doses of L-Arginine 5 g twice daily combined with L-Citrulline 200 mg twice daily. L-Arginine is the sole substrate of Nitric Oxide Synthases (NOS), thus this approach aims to overcome the dysregulated nitric oxide system in CFS/ME patients by providing relatively high doses of the substrate."

Treatment example:

"The patient was a 48 years old woman with previous thyroiditis. She had ME/CFS following mononucleosis in 1997 (33 years of age). She had a Hodgkin lymphoma stage II-A in 2003, and experienced in 2004 a transient response of her ME/CFS symptoms after chemotherapy for lymphoma relapse which has been described [Fluge O, Mella O (2009) BMC Neurol 9:28], and which later led to a pilot case series using Rituximab, also with a major but transient responses of ME/CFS symptoms for this patient. After high-dose chemotherapy with autologous stem cell support, she has been relapse-free from lymphoma since 2006. In autumn 2012, she was admitted to a local hospital with a transient ischemic attach with paresis in left side of 30 minutes duration. She had previously received radiotherapy to the mediastinum and neck as treatment for limited-stage Hodgkin lymphoma, and due to a reduced left ventricular function, her cardiologist started oral isosorbide mononitrate (Imdur®) 30 mg which she received for five days before cessation of the therapy. She had headache and some dizziness the first days, but also noticed an initial response of her ME/CFS symptoms starting within the first 24 hours. She reported a clear improvement on most ME/CFS symptoms during the next days, which she described to be remarkably alike the response she had previously experienced from 6-7 weeks after Rituximab infusion (as a pilot patient in 2007). After Imdur® treatment was stopped on day five, the symptom improvement vanished during the following two days, consistent with a direct symptomatic effect on her ME/CFS disease."

Pilot:

"After discussions with the chairman of the Regional Ethical Committee, we had approval to treat ME/CFS patients that were well-known to us, with Imdur® using low doses (15 mg) initially and then slowly increasing the doses and up to 120mg/day registering subjective symptom changes as compared to baseline, in order to gain experience to draft a protocol in a planned open-label phase-II study.
[0080] All six patients were diagnosed with ME/CFS according to Canadian criteria [Carruthers BM, et al., (2003) J Chronic Fatigue Syndr 11:7-36.] and had performed standard examinations to exclude other disease explaining their condition. Three patients had previously received Rituximab with a clinical response, but then with a later full or partial relapse of ME/CFS symptoms. One patient with very severe ME/CFS had no response to previous Rituximab treatment, and one patient with a post Giardia lamblia ME/CFS had not been given Rituximab previously."

"Observations with the pilot patients

- Follow-up for more than 3 months.

  • - Pure symptomatic effect of isosorbide mononitrate. If exaggerating to much (exercise...) some ME symptoms recur.
  • - Two patients forgot to take the dose one day, with markedly symptoms same afternoon.
  • - Noctural variation in one (ME symptoms in morning before drug intake, clear improvement during afternoon and evening).
  • - One with very severe ME, clear effect on all symptoms except extreme sensitivity to light.
  • - Two patients with no effect after at least two weeks treatment with isosorbide mononitrate. Four out of six had a

    clear symptomatic effect after using the drug more than 2 weeks."
Possible treatment scheme:

"The both components may be administered simultaneously, separately or sequentially to said subject suffering from CFS. For example, the NO donor may be administered by inhalation while the B-cell depleting agent is administered by the way of infusion. Furthermore, while the NO donor may be administered on a daily basis, the B-cell depleting agent may be administered initially in once a week over two weeks and, thereafter, in a free determined time of schedule, e.g. every second or every third month.[0075] In particular, the NO donor may be administered during the initial 4 to 12 weeks, like during the first 4 to 8 weeks of treatment, e.g. the initial 4, 5, 6, 7, 8, 9, 10, 11, 12 weeks to allow immediate relief of the symptoms of CFS while the administration at the B-cell depleting agent as defined herein allows relief to the symptoms of the subject suffering from CFS over a long time period due to the delayed effectiveness thereof."
 

Thomas

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@Sidereal i took 1mg of Guanfacine for around 5 days but didn't notice any improvement except perhaps even a slight worsening of overall symptoms. My biggest issue is neurocognitive dysfunction and sensory overload.

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. 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?

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.

I'm scheduled for IV lidocaine/ketamine at the end of July which I am hopeful will be of great help!
 

Thomas

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How were you able to swing this, if you don't mind sharing?
I don't mind at all, I'm an open book! There is a local pain clinic here that provides this service for patients with intractable neuropathic pain. I don't have much pain as a symptom of my ME however my family doctor is very sympathetic to my condition as he sees how badly it has affected and disabled me.

After I showed him a quick blurb from one of the Goldstein books he agreed to make the referral for me on the basis of an ME diagnosis with associated EDS which I also have. And the clinic agreed to see me. I will have to have a consultation there before the infusion is scheduled so there's always a chance things will be delayed or they will want to change the treatment approach but I'll insist they stick to what I was referred to do. Also, I will have to insist they infuse the combo over 2 or 3 hours as Goldstein stressed. I'll just tell them I'm hypersensitive -- which I am.
 

zzz

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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.
 

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Gingergrrl

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@Thomas If you ever do speak with him again, I am curious as to his thoughts on current ME/CFS treatments such as Valcyte, Rituxan, etc, and any current ideas for severe MCAS or mast cell issues. Thank you again.
 

zzz

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As there has been some interest recently in Dr. Goldstein's most current views on ME/CFS, I thought that some people might find the following short article interesting. It appears to be the last article ever written by Dr. Goldstein, and it appeared last year in The National Forum, which is the newsletter of the National CFIDS Foundation.
Introduction: New Perspectives on Chronic Fatigue Syndrome

By Jay A. Goldstein, MD

My understanding of chronic fatigue syndrome pathophysiology stems from my office practice and functional single photon emission computerized tomography (SPECT), which I did in conjunction with Dr. Ismael Mena at Harbor-UCLA in the '80s and '90s. These were combined with exercise ergonometry and venous measurements of various factors. All the results were astounding and all were totally ignored by medical researchers who received 200 free copies. Either the work was too advanced for them or too threatening. Functional brain imaging was a new technique in those days. The first part of my book, Tuning the Brain, gives autobiographical examples. As one researcher put it when I confronted him, "Jay, if you're right, we should close up our labs and go into some other line of work. You're twenty years ahead of the times."

I view CFS as a nitric oxide and glutamate disorder, affecting primarily the brain. Since the immune system is intimately involved in psychoneuroimmunity, there are bound to be immune system markers, e.e. CD56 "bright" cells - a type of lymphocyte decrease causing the CFIDS Association of America (CAA) to wet its pants, apparently not realizing that lymph nodes and even individual lymphocytes are directly innervated by nerves from the hypothalamus. What Dr. Mena and I saw was a marked reduction of cerebral blood flow that occurred very rapidly (seconds to minutes) after a patient took a treatment that was effective for his or her decrease in an endogenous vasodilator that also might be damaging the mitochondria respiratory chain. Since the primary regulator of cerebral blood flow is nitric oxide (NO), which is closely associated with glutamate, the main excitatory neurotransmitter can be neurotoxic in excess. It was obvious that CFS patients had too much NO (for them). When the blood flow decreased, I naturally assumed this decrease was due to a reduction in NO. I describe possible causes of increased NO and how it is reduced in my articles. [Note: I don't know to which articles he is referring here.]

There is still a "cone of silence" about our extremely graphic findings - one reviewer of Betrayal by the Brain described the SPECT scans as "miracles". Arthur C. Clarke said the word "miracle" is used when confronted with a scientific result of a more advanced civilization. Need I say more.
The "graphic findings" can be seen in the color plates in Betrayal by the Brain.
 

halcyon

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Since the immune system is intimately involved in psychoneuroimmunity, there are bound to be immune system markers, e.e. CD56 "bright" cells - a type of lymphocyte decrease causing the CFIDS Association of America (CAA) to wet its pants, apparently not realizing that lymph nodes and even individual lymphocytes are directly innervated by nerves from the hypothalamus.
:rofl:

When the blood flow decreased, I naturally assumed this decrease was due to a reduction in NO. I describe possible causes of increased NO and how it is reduced in my articles.
I think this has been discussed before, but I can't wrap my head around this. If there's hypoperfusion and reduced cerebral blood flow being shown as the pathology in the SPECT scans, why does further decreasing blood flow make people better?
 

Sidereal

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I think this has been discussed before, but I can't wrap my head around this. If there's hypoperfusion and reduced cerebral blood flow being shown as the pathology in the SPECT scans, why does further decreasing blood flow make people better?
No one knows including Goldstein.
 

Sidereal

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Since the immune system is intimately involved in psychoneuroimmunity, there are bound to be immune system markers, e.e. CD56 "bright" cells - a type of lymphocyte decrease causing the CFIDS Association of America (CAA) to wet its pants, apparently not realizing that lymph nodes and even individual lymphocytes are directly innervated by nerves from the hypothalamus.
:lol::lol::lol:
 

JPV

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@zzz, have you heard of AO+ Mist? It's a topical probiotic spray that David Whitlock has developed which is supposed to oxidize ammonia and boost nitric oxide. They are currently selling it as a cosmetic preparation while they wait for FDA approval regarding any health benefit claims.

Here's the link to an interview where he explains his theories about low nitric oxide levels and ME/CFS...

An Engineering Perspective on CFS – by Dave Whitlock

I'd love to get your input on his ideas and how they might relate to Goldstein's work. I'm curious to try out the spray but I have yet to hear any reports on it's effectiveness in regards to treating ME/CFS symptoms. It sounds very appealing but I've grown quite leery of spending money on things that have little to no benefit.

BTW, Paul Jaminet is offering a 25% discount code for AO+ Mist on his website...

Nitric Oxide and AO+Mist Skin Probiotic at the Perfect Health Retreat
 
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MeSci

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I am puzzled by the claim that there can be innervation of individual lymphocytes. Lymphocytes are mobile and circulate in the blood.

I too am puzzled by the reference to the therapeutic benefits of reducing NO, but NO is a puzzling and perverse compound with a range of properties, probably depending on where it is.

I am wondering whether Dr G is/was better at clinical practice than theory.
 

halcyon

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Clearly he doesn't mean literal innervation. I imagine he's talking about signalling originating in the brain towards lymph organs, reaching the lymphocytes via cytokine signalling as they pass through the organs.