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

[Gingergrrl]

Good luck @Thomas and I hope you find the right combination that works for you.

 

[Jon_Tradicionali]

@zzz

Have dug deep into eNOS dysfunction and uncovered two candidates to treat it.

You have Hydralazine which when combined with a standard NO donor has proven to greatly increase efficacy.
Perhaps bypass the nitrate tolerance which has roadblocked you.

You then have the option of PETN, which is a lot more promising for this purpose and is devoid of nitrate tolerance with potential to be effective even in the presence of reduced NO bioavailability (which I propose is the case with yourself, as well as many of us here).

I've ordered the ISDN/Hydralazine combo and will let you all know its effects. However, the PETN I have not been able to get hold of yet, for obvious reasons. It is readily available in Eastern Europe, which I am conveniently visiting in a couple months time, so I'll update progress on that front also should any occur.

EDIT: http://www.hindawi.com/journals/jdr/2010/213176/

 

[Hip]

Very interesting finding, @Jon_Tradicionali.

I just found this paper on the ability of hydralazine to prevent nitrate tolerance in patients taking nitroglycerin for heart problems:
Prevention of tolerance to hemodynamic effects of nitrates with concomitant use of hydralazine in patients with chronic heart failure



This paper explains the mechanism by which hydralazine prevents nitrate tolerance:
Hydralazine prevents nitroglycerin tolerance by inhibiting activation of a membrane-bound NADH oxidase. A new action for an old drug



I notice that hydralazine is also in Dr Goldstein's list of top 23 ME/CFS drugs.

Goldstein provides this case report on the use of hydralazine for treating an ME/CFS patient (from his book Betrayal by the Brain). Though in that report Goldstein does not mention anything about hydralazine's prevention of nitrate tolerance.

 

[jop]

Fascinating thread. These bits stood out:

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: "

It's pretty exciting that Mella and Fluge are now investigation other CSF treatments. They're not stopping at the rituximab study, they're listening to patient observations and trying other stuff.....and they seem to be in a position to peruse their research interests.

As far as Goldstein's work goes, @zzz had a long remission before relapse, @Peter Hake had some of Goldstein's prescriptions and is able to work with diet/ lifestyle changes.....and Mella and Fluge seem to have found some evidence that at least one of Goldstein's ideas is on the right track.

Perhaps we should send them a copy of Goldstein's books, along with his PR patient's experiences, to see if there is anything else they think is worth perusing?

 

[Thomas]

I had 30 mg of ketamine in 250 ml of saline infused this morning over around 3 hours. The first hour I felt nothing, but after a reasonable amount of the drug had entered my system I began to feel extreme relaxation, mild uphoria, kind of high, not disassociated by any means as out of body, but very mild and pleasant. After a short while of that I began to feel "normal" again and my faculties returned.

After the infusion I felt a little brighter, mild energy boost (mild at best), better mood, reduced anxiety, calmer nervous system, and less "in my head". I still had considerable brain fog though. No instant remission but hey, whatever.

I have another infusion, with a higher dose set for 2 weeks from today. I am looking forward to it as I feel there may be a cumulative effect here. Also, I hope any beneficial effects may appear over the next day or so with more improved mood and functionality, but that may just be wishful thinking.

I am on low dose clonazepam daily and I took a bite of an ativan just before the infusion as I was a little nervous. I'm not sure how the BZD may have interacted or antagonized the ketamine in any way. I do know that the doctors currently using ketamine for severe depression recommend that the patient not be on BZD for at least 2 weeks prior to infusion. However next infusion I will plan on less BZD to see how that fares.

By the way, if the Apocalypse ever comes, ketamine is definitely the drug I want to be on.

 

[Hip]

I had 30 mg of ketamine in 250 ml of saline infused this morning over around 3 hours. The first hour I felt nothing, but after a reasonable amount of the drug had entered my system I began to feel extreme relaxation, mild uphoria, kind of high, not disassociated by any means as out of body, but very mild and pleasant. After a short while of that I began to feel "normal" again and my faculties returned.

Sounds great. How long did the mild euphoria last for approximately?

If we can't beat this disease, then as an alternative, I guess we could just become ketamine users, and remain immobile, brain fogged, but nicely blissful!

 

[Thomas]

Sounds great. How long did the mild euphoria last for approximately?

If we can't beat this disease, then as an alternative, I guess we could just become ketamine users, and remain immobile, brain fogged, but nicely blissful!

Cheers, thank you.
Hmmm I'd say it was around an hour and a bit. I can definitely see how doing an infusion in 60 minutes or something would be much more of a surreal experience.

Actually while I was in that uphoric state I brought up some old emotional traumas in my head and began to forgive people and let the feelings of resentment leave me. And I felt a lot of love for the first time in a while.
Of course, upon returning to normal I still felt those traumas return and am not over them. But I can certainly see how ketamine, and to a much larger extent, psychadelic guided therapy could be a very beneficial one if done properly with an experienced therapist.
But that's a whole other subject...

 

[Thomas]

I think the IV ketamine was a bust unfortunately. The day after and yesterday I had a big bout of depression and anxiety and extra fatigue which felt unlike just regular PEM, and also different to a drug induced relapse. I'm not sure if I should do another infusion in 2 weeks or just cross this one off the list. What would you do?

I also have the ketamine vials with me at home so I am considering making a diluted oral swirl of it but not sure.

 

[MeSci]

I think the IV ketamine was a bust unfortunately. The day after and yesterday I had a big bout of depression and anxiety and extra fatigue which felt unlike just regular PEM, and also different to a drug induced relapse. I'm not sure if I should do another infusion in 2 weeks or just cross this one off the list. What would you do?

I also have the ketamine vials with me at home so I am considering making a diluted oral swirl of it but not sure.

Oh dear - that's a difficult one. Sorry to hear about the depression and fatigue. Was it definitely the ketamine, do you think? Did it wear off?

 

[Thomas]

Oh dear - that's a difficult one. Sorry to hear about the depression and fatigue. Was it definitely the ketamine, do you think? Did it wear off?

I can't be certain it was the Ketamine but I think it was since when it wore off instead of benefitting me it made me feel worse. Either way, even if it didn't make me worse it definitely didn't relieve any ME symptoms. I'm not sure a 2nd infusion is worth it. It's quite the process -- the infusion alone is 3 hours not to mention the exertion of the before and after.

 

[MeSci]

I can't be certain it was the Ketamine but I think it was since when it wore off instead of benefitting me it made me feel worse. Either way, even if it didn't make me worse it definitely didn't relieve any ME symptoms. I'm not sure a 2nd infusion is worth it. It's quite the process -- the infusion alone is 3 hours not to mention the exertion of the before and after.

Sorry - I meant did the depression wear off?

 

[Thomas]

Sorry - I meant did the depression wear off?

The really bad kind did, ya. Thanks for asking.

 

[Thomas]

During a Skype appointment I had with Dr. Hyde the other day -- the first in a while, he got some answers for me on some things related to Dr. Goldstein:

1. the phone number I had stopped working a week after I spoke to Dr. Goldstein last year (sheesh would have been good to know that earlier)

2. Dr. Goldstein is still alive but his condition is slightly worse - can't stand due to vertigo, can no longer write or read due to very poor eyesight

3. There is no manuscript for "Brain Static", although his wife will look further, but doubts it was ever really written

4. Dr. Goldstein's favourite drugs at the time of writing TTB have not changed, and it's likely still a trial and error process, and that he still feels that "magic bullets" are out there i.e. one medication may work versus trying to find the right combination or cocktail.

5. He thinks current heavy duty immune system therapies and research is wrong and that if these drugs work, they are working mostly by altering brain circuitry and/or neural network configurations and transmitter (or something), in the way he described IVIG to work in his books. I didn't get any feedback on his thoughts regarding glial cell activation and therapy. He tries to stay up to speed on current ME/CFS research but that is difficult given his health.

6. He believes there is no "virus" in ME/CFS and that acute onsets are simply physiological responses to something. This one I didn't quite understand. But I guess in short, sensory gating issues and problems with signal to noise ratios etc are still his bag.

7. Apparently he knew more about the endocannabinoid system and their receptors in the 90's than any medical marijuanan researcher today.

8. He believes Nitric Oxide to be the most important player in ME/CFS pathophysiology. Although if he were able to really be on top of things he thinks with all the new medications and current neurobiology research that he could do even better at solving patient's suffering.

Not a huge update, and done through a sort of broken telephone kind of way, but there you go.

 

[Hip]

6. He believes there is no "virus" in ME/CFS and that acute onsets are simply physiological responses to something. But I guess in short, sensory gating issues and problems with signal to noise ratios etc are still his bag.

That is quite strange, given how frequently ME/CFS appears after viral infection, and given that even before Dr Chia's research around 2005 finding enteroviruses and ME/CFS, many early British studies in the 1980s regularly detected enteroviruses at much higher levels in the muscle tissues of ME patients, compared to healthy controls, and Goldstein would surely have been aware of this.

That's not to deny that sensory gating deficits and/or central sensitization syndrome (which Goldstein was very interested in, but he called CSS neurosomatic disorders — see here) may be playing a role in ME/CFS; but I cannot see why Goldstein would rule out the very likely possibility that under certain circumstances, viral infections might trigger sensory gating deficits or central sensitization.

 

[halcyon]

That is quite strange, given how frequently ME/CFS appears after viral infection, and given that even before Dr Chia's research around 2005 finding enteroviruses and ME/CFS, many early British studies in the 1980s regularly detected enteroviruses at much higher levels in the muscle tissues of ME patients, compared to healthy controls, and Goldstein would surely have been aware of this.

You would think he would especially have been aware of DC Costa and John Richardson's SPECT study where 100% of the patients had evidence of enterovirus infection by antibody, PCR, or VP1 test and had abnormal SPECT scans.

 

[Thomas]

That is quite strange, given how frequently ME/CFS appears after viral infection, and given that even before Dr Chia's research around 2005 finding enteroviruses and ME/CFS, many early British studies in the 1980s regularly detected enteroviruses at much higher levels in the muscle tissues of ME patients, compared to healthy controls, and Goldstein would surely have been aware of this.

That's not to deny that sensory gating deficits and/or central sensitization syndrome (which Goldstein was very interested in, but he called CSS neurosomatic disorders — see here) may be playing a role in ME/CFS; but I cannot see why Goldstein would rule out the very likely possibility that under certain circumstances, viral infections might trigger sensory gating deficits or central sensitization.

Agreed. And perhaps something was lost in translation when relayed to me. Goldstein himself wrote in BBTB as well as in other publications that one of the causes to trigger neurosomatic illnesses in genetically predisposed people were "viral encephalopathies". Perhaps he changed his mind, or perhaps he was saying that viruses don't play a major role in the chronic phase of the illness.

Furthermore, Hyde and Goldstein are long time friends and collaborators and Hyde is a huge proponent of enteroviruses being the only possible type of virus likely to cause ME (given their short incubation period and thus capability of starting outbreaks and clusters of illness). Perhaps they disagree on this point, again I don't know for sure.

You would think he would especially have been aware of DC Costa and John Richardson's SPECT study where 100% of the patients had evidence of enterovirus infection by antibody, PCR, or VP1 test and had abnormal SPECT scans.

He for sure is aware of them. Hyde has told me stories how he, Dr. Goldstein, and Dr. Mena would spend hours analyzing brain spects, and learning from those before them like Richardson. Again perhaps this changed over the years. It's obvious Goldstein changed directions and became completely engrossed in his neural network configurations theories and practices just like other doctors have gotten caught-up in their own pet theories. The interesting thing about Goldstein though are the results of his treatments, and how his theory makes a lot of sense for many (if not all) of the ME/CFS symptoms cluster.

 

[halcyon]

Perhaps he changed his mind, or perhaps he was saying that viruses don't play a major role in the chronic phase of the illness.

My impression is that Dr. Hyde believes this as well based only on enterovirus blood testing he did on his own cohort. He must not think much of all the autopsy evidence and Dr. Chia's work showing long term persistence.

 

[Thomas]

My impression is that Dr. Hyde believes this as well based only on enterovirus blood testing he did on his own cohort. He must not think much of all the autopsy evidence and Dr. Chia's work showing long term persistence.

That's not correct. In 2013 Dr. Hyde urged me to send a stomach biopsy to Dr. Chia's lab in California to confirm enteroviral involvement in my ME/CFS (mostly for evidence for disability), which I did. And he has praised Dr. Chia's work as well. I can't comment on the autopsy reference as I don't have any insight as to his opinions on those.

Also, this year's annual holiday letter that Hyde sends to his patients directly stated his belief of chronic enteroviral infection in ME. I don't have an electronic copy of this but I do have a copy of Hyde's most recent lecture from last year in Amsterdam (I think), which I will attach to this post in the event you or anyone is interested in reading it.
Cheers.

 

[halcyon]

Also, this year's annual holiday letter that Hyde sends to his patients directly stated his belief of chronic enteroviral infection in ME.

Thanks for clarifying, I guess I had misinterpreted what he said.

 

[Thomas]

In BBTB Dr. Goldstein lists that his 4 favourite treatments were (i) IV ketamine (ii) IV lidocaine (iii) IV amantadine and (iv) IV Guaifenesin.

I'm not even sure if the latter two are even available in Canada or the US but I plan on asking the doctor who administered the IV ketamine and lidocaine.

If given the opportunity would you try IV amantadine and/or guaifenesin? I've tried both orally without much benefit or adverse reactions but perhaps the IV route is more effective and worth pursuing? I'm not sure I even have the energy to fight for treatments right now as these come in peaks and valleys, but was just curious on other people's thoughts.