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

[sb4]

@sflorence Thats very interesting. You getting the drugs from an online pharmacy? If so which one?

Have you noticed with any of the drugs that they work for a day or two, or until you take a break, and then stop working thereafter?

What is your methodology for choosing drugs?

 

[Stretched]

(I haven’t read all the posts here... . ) FWIW, I believe there’s a thread over at Healthrising.org/forums. Cort covered one of the only PWCS to ever go from bedridden , being dragged to see Goldstein, to working out and field hockey, in a matter of weeks. Maybe some ideas if you haven’t seen it.

 

[sflorence]

@sb4

I am choosing the drugs in a slightly different manner. I am following his guidelines with many of his drugs, but I am also taking anecdotal evidence from PubMed where there are doctors reporting having cured their patients of MCS with psychotropic drugs. I focus on MCS because currently my MCS is worse than my CFS. CFS and MCS many say are the same illness, and if I remember reading correctly Goldstein claimed that most of his CFS patients had MCS as well. Most members on this site are deeply sensitive to all drugs, herbs, and supplements.

Annie Hopper has hundreds of anecdotal recoveries of MCS/CFS through her program. As does the Gupta Programme. They both claim that MCS/CFS is the same illness, and through the same method they are healing. If you are not familiar with the Annie Hopper or Gupta Programme I would look into that before doing Goldsteins method. Goldsteins method is much more dangerous and should be used as a final resort. I was unable to do these programs due to how extreme my MCS is.

This being said, I have seen anecdotal recoveries through drugs such as Risperdal, Celexa, Effexor, Gabapentin, Parnate, ect, ect.. cure people of their MCS. Unfortunately, I do not know if these people were ever able to come off their meds, but if Goldstein's words are true, they should be able to come off after a few years. There are more stories on Forums that are a bit harder to find, but they are there, and people are extremely angry at them for claiming CFS/MCS is "all in their head".

 

[pattismith]

An excellent second choice for reducing glutamate presynaptic release is chlorzoxazone, which is much more benign, and which Dr. Goldstein described as being "surprisingly effective". I have been taking chlorzoxazone for many months, and it's one of my two most effective medicines (along with gabapentin) from Dr. Goldstein. Chlorzoxazone is safe enough that a half-size dose is available OTC in Canada. People should have their liver enzymes monitored if on it long term, however.
ce.

A new study on that drug:

Chlorzoxazone exhibits neuroprotection against Alzheimer’s disease by attenuating neuroinflammation and neurodegeneration in vitro and in vivo (mouse study)

 

[Hipsman]

The best way to raise your nitric oxide levels is to take nitroglycerin or one of its relatives. Nitroglycerin is converted directly to nitric oxide by the body.

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.

I took one 20mg tablet of isosorbide dinitrate - no effect. Do you think if isosorbide dinitrate doesn't work from start, then, most likely, it won't work even if taken long-term?

Also, do you think nitric oxide levels can still play a significant role (in particular ME/CFS sup-type) if taking isosorbide dinitrate has no effect?

 

[Hip]

I took one 20mg tablet of isosorbide dinitrate - no effect. Do you think if isosorbide dinitrate doesn't work from start, then, most likely, it won't work even if taken long-term?

Might be worth trying again as single doses a few more times, but continuous use of nitrate drugs such as nitroglycerin (glyceryl trinitrate) or isosorbide dinitrate will lead to nitrate tolerance, where the drug loses its effect.

Apparently high dose folic acid (10,000 mcg daily) and vitamin C help prevent nitrate tolerance and nitrate drug induced eNOS dysfunction.

 

[Hipsman]

Might be worth trying again as single doses a few more times, but continuous use of nitrate drugs such as nitroglycerin (glyceryl trinitrate) or isosorbide dinitrate will lead to nitrate tolerance, where the drug loses its effect.

Thanks, looked at studies, I can try taking one 20mg isosorbide dinitrate tablet with Vit-C a few times with one week in between each dose.
Most likely I will use the same Vit-C dosing as in study, but only once a week, on the same day as I take isosorbide dinitrate (1000mg x3 a day.).

 

[zzz]

I took one 20mg tablet of isosorbide dinitrate - no effect. Do you think if isosorbide dinitrate doesn't work from start, then, most likely, it won't work even if taken long-term?

That was my experience. Isosorbide dinitrate worked only that one time for me, although that one time was very significant. If the first dose doesn't do anything, I think that it's extremely unlikely that subsequent doses will.

Also, do you think nitric oxide levels can still play a significant role (in particular ME/CFS sup-type) if taking isosorbide dinitrate has no effect?

I really don't know.

 

[bensmith]

Interesting that he thinks mcs/cfs are the same disease.

 

[MartinK]

Annie Hopper has hundreds of anecdotal recoveries of MCS/CFS through her program. As does the Gupta Programme. They both claim that MCS/CFS is the same illness, and through the same method they are healing. If you are not familiar with the Annie Hopper or Gupta Programme I would look into that before doing Goldsteins method. Goldsteins method is much more dangerous and should be used as a final resort. I was unable to do these programs due to how extreme my MCS is.

I had no MCS, bur must to say DNRS from Annie improved my sleep a lot...within two months.

Thanks @sflorence for mentioning some names of some drugs, I will definitely explore. I'm trying to improve further and at the moment it looks good.

 

[junkcrap50]

21 Mexiletine 150-300 mg po 30-45 minutes 6-8 hrs

Does anyone know why Dr. Goldstein used Mexiletine? For pain & muscle symptoms? Has anyone taken it?

 

[Muon]

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

Is there an order/sequence to follow for the profiling drugs (center column)? Where do you start?

 

[Muon]

Send me a personal message when you are interested in the book 'Tuning the Brain'.

 

[Hipsman]

Might be worth trying again as single doses a few more times, but continuous use of nitrate drugs such as nitroglycerin (glyceryl trinitrate) or isosorbide dinitrate will lead to nitrate tolerance, where the drug loses its effect.

Apparently high dose folic acid (10,000 mcg daily) and vitamin C help prevent nitrate tolerance and nitrate drug induced eNOS dysfunction.

I tried this a few times, interestingly, I started having mild to moderate headache after ~6 hours from taking Isosorbide dinitrate 20mg. This headache is different from the one I feel when there's ME/CFS symptom worsening.

11.29 - Isosorbide dinitrate 20mg + Vit C 3g - no effect
12.06 - Isosorbide dinitrate 20mg + Vit C 3g. Headache started at the evening, clears up in the mourning.
12.12 - Isosorbide dinitrate 20mg + Vit C 3g, Headache started at the evening, clears up in the mourning.

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

Is there an order/sequence to follow for the profiling drugs (center column)? Where do you start?

You might want to tag @JPV so he sees you post.
EDIT: looks like he last logged in to phoenixrising in 2016, so probably he will never see this.

 

[Hip]

I started having mild to moderate headache after ~6 hours from taking Isosorbide dinitrate 20mg.

That's not unusual.

 

[bensmith]

Does anybody have some extra pills they can mail me? If its one dose that works or not im sure there are tons of lefties laying about.

op did you do this thinking it would have some effect? Anybody else have this or any effect.

 

[Hipsman]

Isosorbide dinitrate is very cheap and you can order online, that would be cheaper then mailing it from another country, plus it's a lot of hassle to do for someone with ME.

 

[ashram]

I've bought isosorbide dinitrate and I'm willing to try it. Is it a relatively safe drug ? I've checked for the side effects online but couldn't find stats about it, so I guess it's probably safe.

 

[Shanti1]

@hapl808 I hope you don't mind, I moved our conversation over here to so as not to derail the other thread.

I used to have a panic moment when someone would ask my phone number or address because there were moments I couldn't!
I think I was fortunate in that I was able to identify EVB and Candida as my triggering infections. Clearing the candida and pushing the EBV into latency made a big difference. Identifying my food triggers (sugar and starches) was also critical. Removing these obstacles it possible for other therapies to be effective. High-dose B1 and correcting B12 deficiency also seems to have played an important role.

I then read Reviving the Broken Marionette and Chronic Fatigue Syndrome: A Treatment Guide, both books on the use of off-label meds in ME treatment, based, in part on Dr. Jay Goldstein's work. I selected about 30 meds that I thought best addressed my symptoms and constitution and, to my surprise, found that I responded to well to 10 or so, all of them geared toward impacting cognition in some way. Since my ME/CFS tends to adapt to any med I use, I took them on a rotating basis, trying not to take anything more than once in a week. I do not have an explanation, but somehow the brain fog lifted over a two month period. If it starts to return, I can usually clear it pretty quickly with one of the meds. To me it seemed that with the EBV and candida out of the way, I could manipulate my dysfunctional circuitry and reset it to some degree.

Unfortunately, I either have residual damage or the EBV or something else is still causing me problems as when I attempted a bike ride in the over exuberance of my new found energy, I developed orthostatic intolerance overnight. Now I feel ok.... as long as I am lying down. Can only sit or stand with compression and meds, and even that is limited.

Thanks for that info. I read Betrayal of the Brain and I find Goldstein's approach interesting. I wish I had known of him when he was still around and practicing. I did find Candida diets and supplements very helpful in my first 5-10 years of dealing with these symptoms.

What meds did you find most helpful? I haven't tried many of his medications - just a few very mild ones like the eyedrops (maybe helpful? took a non-rx version, though.), glycine, etc. I'd be interested to know what order and medications you took?

I think once you're more severe, it's harder to 'fix' these symptoms. Before I would bounce between mild and moderate, but since sliding into severe about 5+ years ago, I haven't really changed much at all. Completely homebound, unable to stand without assistance, all that stuff.

I had been fatigued and brain fogged for a very long time, but I only completely lost the ability to exercise in mid 2019 due to PEM. At my lowest, I was mid-moderate, but started the antiviral in Aug 2021, so yes, I am still on that threshold where it is easier for things to make a difference. Nonetheless, as you know, Dr. Goldstein did reportedly have even severe patients who made remarkable recoveries, some of them have posted on this forum. I read Betrayal by The Brain (great title) and am trying to get through his next book Tuning the Brain, but it is about four times as thick, so I'm not sure I will. I found the two books I mentioned earlier much more practical for choosing my meds.

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.

 

[hapl808]

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.

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

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?

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).

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.

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

I've only done somewhat regular dose benfotiamine, but might revisit that.

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?

Haven't tried any of the others you mention, I think.