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

[Shanti1]

That's very helpful info - thanks! Are all those from Goldstein?

Semax, selenium, B1, and adrenal glandulars are not on his list.

The others I think are all on his list, but I found the medication descriptions in Reviving the Broken Marionette and Chronic Fatigue Syndrome: A Treatment Guide a little easier to use than Goldstein's work.

The only item on the list above I take daily is Atomoxetine, to help me maintain my BP. Everything else, I rarely use now, but in their moment, they were incredibly helpful.

From that list, I tried non-rx naphazoline that was slightly helpful, but wasn't sure if taking lots daily was a good idea. That seemed more like a profiling drug for Goldstein?

Yes, naphazoline is one of Dr. Goldstein's "profiling drugs". I know he used some of his profiling meds as long-term treatments. Not sure about naphazoline though, I can see the potential concerns with long term use.

It was an amazing experience for me the first time I tried naphazoline drops. One drop of OTC strength naphazoline in each eye and my symptoms completely lifted. It was the first Goldstein drug I tried. The next day, I tried again and got half the response and on day 3 it made me worse. So, I took to rotating it along with everything else. My body was determined to stay brain-fogged and I was determined to shake the fog off by never using the same thing twice in 10-14 days. I was also fortunate I got a response to so many things, not everyone does.

Apart from the list of meds that did help me, I also have a long list of those that didn't.

Selenium at even 200mcg seemed helpful, but over a couple months seemed to severely worsen my brain fog. When I stopped taking it, the brain fog improved slightly (just back toward baseline awful instead of extra awful).

I get worse with selenium daily. I take it about twice a month.

Guaifenesin helped me years ago when I was more moderate, but I tried it once when I was more severe and it made me want to sleep all the time. Not sure if that was something else going on, though.

Caffeine helps me, but I think it's a balance of not doing too much.

Yeah, I'm not sure why Guaifesesin helps me. I know it is an NDMA inhibitor, and that can be calming to the nervous system. Maybe that is why it made you sleepy.

I'm with you on the caffeine, too much throws off the balance. I go between green tea and coffee.

Huperzine (like Mestinon I think) has helped me in the past, but haven't revisited for a few years.

Huperzine crosses the BBB and I found it too stimulatory. Mestinon doesn't, but somehow it gave me just the right mental boost, but I know others report responding better to huperzine.

Cialis I tried in very low dose (like 2.5mg) and it seemed somewhat helpful, but I never took it regularly or higher dose. What dose did you use and did you take it daily?

I also did about 2.5mg. I can't use it now since it drops my BP too low, but prior to the OI, it gave a nice mental boost from the increased blood flow.

I think the drugs that might work are quite individualized. For example abilify and benzos, which cause many to feel better, made me feel much worse.

 

[zuperhero]

coming back to main theme- Goldstein protocol, my impression, after looking at the list of medicines suggested by him, is that maybe few of the drugs has potential of 'repairing' cfs but most of them seems to artifically stimulate patient, so under the influence of them he will fell better. To put it in other words, i would be able to go for whole weekend party marathon if dr Goldstein stock me up with metamphetamine, opioids, benzos, ketamines, gbl/ghb, certain hormones, etc and even if i will dance my ass off for whole 2 days, it doesent mean that im cured or better in any sense

 

[Shanti1]

Goldstein protocol, my impression, after looking at the list of medicines suggested by him, is that maybe few of the drugs has potential of 'repairing' cfs but most of them seems to artifically stimulate patient, so under the influence of them he will fell better. To put it in other words, i would be able to go for whole weekend party marathon if dr Goldstein stock me up with metamphetamine, opioids, benzos, ketamines, gbl/ghb, certain hormones, etc and even if i will dance my ass off for whole 2 days, it doesent mean that im cured or better in any sense

If you are looking at the list of Dr. Goldstein's Profiling drugs, you should be aware that these were used to elicit a rapid response over a 1-3 day office visit to determine which medication may be effective long-term. Dr. Goldstein used a selection of 200+ meds in his treatment of ME/CFS.

Using meds (both on or off label) is not a cure for ME/CFS, but for many of us, the use of meds can keep us functional. In the absence of a cure, I will take a band aid. I have benefited greatly at various times from many of the meds he discusses in his book, only one of which is a stimulant (modafinil), which I only use on rare occasion and cautiously. I do not use benzos or opioids. I think many of us wish we had access to a doctor who was willing to prescribe off-label to help us find ways to improve our quality of life, as Dr. Goldstein did.

 

[hapl808]

I think many of us wish we had access to a doctor who was willing to prescribe off-label to help us find ways to improve our quality of life, as Dr. Goldstein did.

I wish I had known of Goldstein back then.

most of them seems to artifically stimulate patient, so under the influence of them he will fell better.

I don't think that really explains it. He claimed he could get severe patients into remission within a week of office visits. Even if that were occasionally true, stimulants wouldn't do that as far as I can tell. He said that often a drug would work for a year or two and then stop and he'd have to find a new drug, but at least in his books he doesn't describe them becoming much worse after treatment which would be expected with just random stimulants?

 

[Judee]

At the height of my worst episode of ME/CFS, I took a 10 mg tablet of isosorbide dinitrate (Isordil), which is essentially a longer acting form of nitroglycerin. I went from being bed bound to working full time in three days. Within three more weeks, I had achieved complete remission of all symptoms, and I remained that way for almost all of the next eight years. I didn't even need the Isordil during that time.

Do you think it also would have worked with isosorbide mononitrate as well or do you think the longer action had something to do with your improvement?

 

[zzz]

Do you think it also would have worked with isosorbide mononitrate as well or do you think the longer action had something to do with your improvement?

I can't say for sure, but I think that the longer action of the isosorbide dinitrate really did have a lot to do with my improvement. The fact that this was so early in my illness was definitely crucial; later on, isosorbide dinitrate had little or no effect for me, and it's been many years since I even tried it.

 

[bob800]

It was an amazing experience for me the first time I tried naphazoline drops. One drop of OTC strength naphazoline in each eye and my symptoms completely lifted. It was the first Goldstein drug I tried. The next day, I tried again and got half the response and on day 3 it made me worse.

@Shanti1, if you take the naphazoline just once in awhile, do you find it still produces some negative effect after the initial positive effect? Or, does the positive effect just fade back to baseline? I ask because with ranitidine and cimetidine, which were also quick-acting Goldstein drugs, I always feel worse after the initial improvement, even if I only take a single dose.

I wish he spent more time discussing solutions to tolerance in his books, because that seems like the obvious issue with his approach. I tried the inositol trick he mentions for reversing tolerance, but it just made me feel spacey with reduced cognition. I think Hip mentioned earlier in this thread that inositiol also didn't work for him either.

The more I read about Goldstein's approach, the more convinced I am that it works in the short-term, but the less convinced I am that it continues in the long-term. If I had been a patient Goldstein, I would have been a terrific in-office responder to things like ranitidine, which he would probably mentally note as a total treatment success. But a couple days later, the positive effect would totally disappear. I wonder how much long-term correspondence he maintained with patients. He does specifically mention in some treatments reports that "a year later, the patient is still doing well" or something to that effect.

 

[Shanti1]

Hi @bob800
Although Goldstein's self-stated remission and partial improvement numbers were quite high, it is hard to know what they actually were, how good his follow-up was, how often he had to adjust meds etc.

This thread starts with a poster's account of taking long-lasting nitroglycerine and having an 8 year remission! There is also a story in one of Goldstein's books of a severe patient taking nitroglycerine and going into complete remission for one day, and then nothing ever seemed to work for them again.

For myself, I had already discovered prior to finding Goldstein's work that most things that helped me only worked for a short duration before they stopped working or made me feel worse. Based on this, my approach became to rotate anything I had a positive response to, never taking the same substance more than once in a two week period. The naphazoline went into this rotation. I did once try naphazoline for three days in a row and the effect was lost. I was afraid I wouldn't get it back again, but after a break, it did provide its one-day benefit.

I would say that working with Goldstein's approach helped me in two main ways: 1) Based on how I responded to things, it helped me understand what was "broken", for example, I had positive responses to anything that increased catecholamines, vasoconstriction, and blood flow to the brain (as long as it wasn't too vasodilatory). 2) As I rotated the Goldstein meds, I found that I needed them less and less, somehow I think I reset some aspects of my biochemistry. Brain fog, which used to be my main complaint, was greatly resolved. In a way, I was fortunate that I did respond immediately to so many substances and had the experience to rotate them.

I had been taking valacyclovir and oxymatrine for sometime prior to experimenting with off-label meds but the improvement from them had plateaued. I honestly think that if I hadn't put my EBV into some degree of latency, I wouldn't have been able to have improvements with the Goldstein meds, and infections is something I haven't seen Goldstein address.

I also tried Inositol to help with resistance, but like you, I was too sensitive to it.

 

[Shanti1]

I managed pretty well on Goldstein meds for a while (needing them less and less) until, thinking I was greatly recovered, I went on a bike ride and subsequently developed severe orthostatic hypotension. I now manage that with compression stockings and droxidopa. The Goldstein meds still help if I get a reoccurrence of my original variety of brain fog, but I've had to seek out new solutions for new issues.

 

[MeSci]

Based on how I responded to things, it helped me understand what was "broken", for example, I had positive responses to anything that increased catecholamines, vasoconstriction, and blood flow to the brain (as long as it wasn't too vasodilatory).

Could you clarify whether the drugs caused vasoconstriction or vasodilation?

 

[bob800]

Thanks Shanti for sharing your experience!

As I rotated the Goldstein meds, I found that I needed them less and less, somehow I think I reset some aspects of my biochemistry.

Interesting, that is not what I expected but good to hear.

Anyhow, the ones that worked for me on a rotation basis, along with a few natural things: amantadine, nimodipine, Naphazoline eye drops, mestinon, pentoxifylline, semax peptide, high dose B1, high dose selenium, modafinil, atomoxetine, Cialis, Guaifenesin, caffeine adrenal glandulars.

Among amantadine, atomoxetine, and modafinil, which did you find to be the least prone to cause overstimulation / crashes? I've tried modafinil, but even a single dose causes me anxiety and autonomic symptoms in the evening (e.g. as it wears off) and the following couple days.

 

[Shanti1]

Could you clarify whether the drugs caused vasoconstriction or vasodilation?

Hi @MeSci - for me, vasoconstriction meds seem to be most helpful, atomoxetine (norepinephrine reuptake inhibitor), naphazoline (alpha-1 agonist), droxidopa (norepinephrine precursor), cortisol, pyridostigmine (improves bp in those with OH by enhancing sympathetic ganglion transmission).

I seem to have a peripheral and central sympathetic deficit, so I also do well with meds that are stimulatory. Some of the meds above also have a mental stimulatory effect, but meds like modafinil, amantadine, I can get benefit from.

Sometime I can also get a good response to nimodipine, which is a vasodilator (calcium channel blocker), but is more specific to brain blood flow than peripheral. Nimodipine seems to help when I have that dense, thick fog, state where I have to read a simple sentence 5 times.

I've also had positive responses to pentoxifylline, though not sure why, and a few others. Most of the meds I could only get a good response to for one day (hence the rotation plan), with the exception of atomoxetine and droxidopa. I now take droxidopa daily and only use others on rare occasion.

Among amantadine, atomoxetine, and modafinil, which did you find to be the least prone to cause overstimulation / crashes? I've tried modafinil, but even a single dose causes me anxiety and autonomic symptoms in the evening (e.g. as it wears off) and the following couple days.

I would say that modafinil is the strongest of the three and the one most likely to lead to a crash. I know one member on this forum also reported a crash post atomoxetine after feeling amazing for a day, but other members have reported benefit with regular use. Amantadine could be the gentlest, it works as a dopamine agonist and NMDA antagonist. Bromantane is another med in the adamantane class that, in addition to supporting dopamine, also strengthens GABA signaling. I found it too sedating, but it might be a better choice for those who get overstimulated. Also, I never start with a full dose. I usually start with a fourth or a fifth of a dose and go up or down from there.

When I chose the meds I wanted to try, I found Erica Verrillo's book Chronic Fatigue Syndrome Treatment: A Treatment Guide and Reviving the Broken Marionette by Maija Haavisto helpful. Based on the med mechanism, profile, and my symptoms, I chose the meds I thought I might respond to. I had some hits and also a lot of misses.

 

[Giacobone]

Has anyone found a physician to guide them through the Goldstein medications? I ordered Betrayal By the Brain and the companion volume but I'm too sick to concentrate or remember much. I just want this hell to be over.

 

[bob800]

Has anyone found a physician to guide them through the Goldstein medications? I ordered Betrayal By the Brain and the companion volume but I'm too sick to concentrate or remember much. I just want this hell to be over.

I have not met any physician who is familiar with him. But, I have found it manageable to convince doctors to prescribe me trials of many of his drugs, because many of them have been used in small published studies for CFS or adjacent conditions (POTS, fibromyalgia, RLS, etc). Printing out a study and bringing them to the doctor works well.

If you post a list of drugs you want to try, I can try to find corresponding studies for you.

 

[bob800]

Here is a list of some of the drugs he uses that are OTC:

From Betrayal by the Brain:
-Ranitidine (not sold anymore, but Tagamet has the same effect on me)
-High-dose glycine (he uses 0.4 grams per kilogram body weight max, dissolved in juice)
-Naphazoline eye drops (sold at lower concentrations as Naphcon-A)

From Tuning the Brain:
-Guaifenesin (sold as Mucinex)
-Nicotine patch
-Niacinamide and forskolin (all to augment stimulants)
-SAM-e
-NADH ("generally disappointing" he says)

 

[Shanti1]

Has anyone found a physician to guide them through the Goldstein medications? I ordered Betrayal By the Brain and the companion volume but I'm too sick to concentrate or remember much. I just want this hell to be over.

I have Goldstein's books and they are really hard to work with. I found Reviving the Broken Marionette and Chronic Fatigue Syndrome: A Treatment Guide, which both draw from his work, much easier to navigate. I used those two books and the "Companion Volume to Betrayal by the Brain" to read about meds and pick the ones that seemed the best fit for me, trying each one at a time, first at a very low dose.

 

[Judee]

Ranitidine (not sold anymore, but Tagamet has the same effect on me)

Does it help with your ME?

 

[bob800]

Does it help with your ME?

Sort of... The effect is dramatic. Within an hour of taking it, all my energy comes back and I feel normal for a couple hours. But after that, I get a strong groggy/weak feeling that takes days to subside. During this time, additional doses just prolong this grogginess instead of giving me energy. I have to wait a week or two for my system to "reset" before I can reproduce the initial benefit.

Other drugs that have the same effect on me (amazing and then terrible grogginess) are cimetidine, cromolyn, and valacyclovir. I THINK the common pathway is microglial inhibition, but I'm not sure.

I have tried all kinds of things to reverse or prevent the "groggy phase", with no luck. The only thing that helps lessen its severity/duration a little bit is LDN, but not nearly enough, at least at the dose I take.

 

[SWAlexander]

I have Goldstein's books and they are really hard to work with.

May I ask if Dr. Jay Goldstein´s books have helped you?
I met a lady from Australia who visited him in the CA.

 

[Shanti1]

May I ask if Dr. Jay Goldstein´s books have helped you?
I met a lady from Australia who visited him in the CA.

I found the three books mentioned above, Reviving the Broken Marionette, Chronic Fatigue Syndrome: A Treatment Guide, and The Companion Volume to Betrayal by the Brain, much more helpful for profiling medications, and they cover most of the meds in his books. The Companion Volume to Betrayal by the Brain is also particularly helpful in understanding is approach to the patient and application of medications. It is a small book.

I found his books mostly fascinating because he was so far ahead of his time in understanding ME/CFS and the dysregulated nervous system. He does have a chart in one of his books, reproduced at the link below, which I also used to select meds to try, but I don't think it is necessary to read his long, dense books to apply his approach.

https://forums.phoenixrising.me/thr...on-me-cfs-treatments.34516/page-6#post-582561