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

[Sherlock]

It's hard to tell when you're having it though!

Yep, it is difficult. You get that pause and then that boom. I had very bad SOB at that time also.

You need a stethoscope to tell the difference I had (presumaby) BBB when I had (presumably) viral myocarditis. A miss every 5 seconds. Day after day for weeks. Every night while walking up the stairs to go to bed, I wondered if I would wake up dead. Finally, I decided to run as fast as I could up a long steep hill at my favorite park, to decide it one way or the other.

I also once had concomitant noises during another spell of missed beats. It was like a whistling. I would never have known about it, without a stethoscope. I found auscultation sounds on a website, and I seemed to match a benign sound.

 

[Sidereal]

Yep, it is difficult. You get that pause and then that boom. I had very bad SOB at that time also.

You need a stethoscope to tell the difference I had (presumaby) BBB when I had (presumably) viral myocarditis. A miss every 5 seconds. Day after day for weeks. Every night while walking up the stairs to go to bed, I wondered if I would wake up dead. Finally, I decided to run as fast as I could up a long steep hill at my favorite park, to decide it one way or the other.

Horrific. I'm so sorry you had to go through that. My most recent relapse a couple of years ago started with scary cardiac/autonomic symptoms which was diagnosed as "probably coxsackie" at the time but my arrhythmia was nowhere near as severe as yours.

 

[Sherlock]

Horrific. I'm so sorry you had to go through that. My most recent relapse a couple of years ago started with scary cardiac/autonomic symptoms which was diagnosed as "probably coxsackie" at the time but my arrhythmia was nowhere near as severe as yours.

Well, thank you kindly.

I had read at that time that Coxsackie was the most likely, then other sources said that was not true. It could presumably be any enterovirus, or any virus. The only sure diagnosis then (6 yrs ago) was by autopsy. A Dallas Criteria scale went by symptoms, IIRC. There were the alligator-forcep biopsies, but that doesn't necessarily find focal myocarditis - more likely to find the diffuse type.

You probably know those diagnostic details, I'm just posting it in case.

My initial symptoms after the bad cold, btw, were sudden onset hypertension and orthostatic hypotension.

 

[Sidereal]

Well, thank you kindly.

I had read at that time that Coxsackie was the most likely, then other sources said that was not true. It could presumably be any enterovirus, or any virus. The only sure diagnosis then (6 yrs ago) was by autopsy. A Dallas Criteria scale went by symptoms, IIRC. There were the alligator-forcep biopsies, but that doesn't necessarily find focal myocarditis - more likely to find the diffuse type.

You probably know those diagnostic details, I'm just posting it in case.

My initial symptoms after the bad cold, btw, were sudden onset hypertension and orthostatic hypotension.

Did you get any diagnostic workup at the time?

 

[SDSue]

Naphazoline eye drops of 0.01% concentration are available here. Are these suitable, do you know? I find it hard to imagine that administering eye drops could have such profound effects on some ME/CFS patients.

In the early days of glaucoma treatment, when only beta blockers were available, it was well known that the drops caused severe systemic effects in a large percentage of patients, particularly the elderly.

Up 80% of an eye drop drains through the nasolacrimal canal, where it is absorbed by the nasal mucosa. Because there is no hepatic first pass effect, the absorbed dose behaves much like an intravenous drug dose and can cause rapid and remarkable systemic effects. (This is why people snort drugs - straight to the highly vascular nasal mucosa!)

Systemic effects can be largely prevented by applying gentle pressure to the puncta for one minute after the drops are instilled.

 

[Sherlock]

Did you get any diagnostic workup at the time?

With no insurance, I saw no doctors whatsoever.

But I did end up on a heart disease forum, where there were 2-3 others from around the country at the same time (it was an October) who had also ended up with this same sudden onset collection of symptoms. They did have every test from lots of different docs - and got not diagnosis. So I used their results to extrapolate to me Plus some logic.

I did look into building an EKG machine, using a laptop and e.g. pennies for the electrodes, but got better and didn't pursue that. Funny world, eh?

 

[Sidereal]

With no insurance, I saw no doctors whatsoever.

But I did end up on a heart disease forum, where there were 2-3 others from around the country at the same time (it was an October) who had also ended up with this same sudden onset collection of symptoms. They did have every test from lots of different docs - and got not diagnosis. So I used their results to extrapolate to me Plus some logic.

I did look into building an EKG machine, using a laptop and e.g. pennies for the electrodes, but got better and didn't pursue that. Funny world, eh?

You spared yourself the expense and the stress of dealing with a parade of charlatans.

 

[knackers323]

anyone gone on to try any of these treatments?

 

[Sasha]

@Jonathan Edwards - I wondered if you'd seen this thread? This post in particular:

http://forums.phoenixrising.me/inde...emission-me-cfs-treatments.34516/#post-533495

I'm really surprised I've never heard of all this. What do you make of it (when you're back from holiday - no rush!)?

 

[Misfit Toy]

So I think this is great if it works for you. And I don't doubt that it does work for people. My feeling though is that what if you have liver problems, which I have? There are a lot of medicines here, which I have tried like gabapentin and a lot of the other medicines on there that have made me sicker than a dog.

I think this is good if you can handle these types of medications. I've thought a lot about these treatments due to you, @zzz, but since I happen to be one of those people that is so sensitive, they freak me out. Plus, I'm not so sure I believe that all these medicines can actually cure a person. Again, it's another doctor focusing on one aspect of the condition just like Lerner focuses only on viral situations. So Goldstein focuses on the brain, Lerner focuses on viruses.

I think theres so much going on here, more than just the brain. I have stomach issues, I have liver issues, I have interstitial cystitis and endometriosis which there's a hormonal component. I have so many different things going wrong, as the years have gone by, I have gotten sicker.

It's clear that they help for a bit and then you're back to square one. That's why I haven't really pursued it Z. I hate medicine and it all turns on me. Perfect example, Percocet put me to sleep in the beginning when I first was on it about a month ago. Now, I can't sleep on it.

Tagamet caused me to have massive amounts of anxiety and my heart was flying. That was one of the worst medicines I've ever taken.

However, I think for people who have less sensitivities this could definitely be worth a try. I think anything is worth a try. But I also think that if this was a cure-all he would've gone on to be in the New York Times or Newsweek as curing chronic fatigue syndrome. But it doesn't work for everybody and in fact, you hardly even hear his name anymore.

 

[Seven7]

No, they're not. That's the OTC strength; Dr. Goldstein said that those rarely had any effect on his patients at all. You need to use the 0.1% prescription strength, which you can find here.

Have any of you found the Drops, that place says it is not available anymore.

 

[zzz]

Have any of you found the Drops, that place says it is not available anymore.

They're just no longer at that link, but the pharmacy still carries them. I searched for naphazoline, looked through the results, and found the 0.1% eyedrop solution here. The price is the same as before; it's about $10 including shipping. Unfortunately, I can no longer edit the post that has the original link.

Side effects are rare, especially from a single dose, which is all that is needed to see if the drops work. According to Dr. Goldstein, they work in about 20% of PWME, and when they work, they very often eliminate all symptoms. The normal dose is one drop in each eye 3x/day. The most common adverse reactions are nervousness and insomnia after multiple doses. According to Dr. Goldstein, these reactions are easily resolved by diluting the solution with normal saline until the reactions go away. For some very sensitive people, the OTC version of these eyedrops (with a concentration of 0.01%) may be necessary, but for most people, this low concentration is ineffective.

This was always the first medication that Dr. Goldstein tried with his patients. When it works, it works within seconds, via the trigeminal nerve. He had a lot of very surprised patients who couldn't believe that seemingly untreatable symptoms that they had for years could disappear in seconds.

 

[JPV]

I believe that Naphazoline, Nitric Oxide and Zantac/Ranitidine all have anti-inflammatory properties. Just something to think about.

 

[Vitalic]

One thing I have never understood is why, if you had made a ground-breaking discovery in the treatment of a disease that affects people in the hundreds of thousands and perhaps even millions, would you spend a bunch of time writing and promoting multiple books, instead of working to demonstrate and validate the findings such that they can be used in a wider clinical setting and thus potentially improve the lives of vast numbers of people, and all the acclaim and advances in understanding that would inevitably come with that. Something about it just seems wrong, like the Nigerian prince that wants to give you a big pot of money if you'll just transfer some money to them first.

 

[Hip]

why, if you had made a ground-breaking discovery in the treatment of a disease that affects people in the hundreds of thousands and perhaps even millions, would you spend a bunch of time writing and promoting multiple books, instead of working to demonstrate and validate the findings such that they can be used in a wider clinical setting and thus potentially improve the lives of vast numbers of people

Dr Jay Goldstein was apparently refused funding to conduct studies on the treatments he discovered, due to ME/CFS politics.

 

[Gingergrrl]

I agree with @Hip and Dr. Goldstein tried to get funding and was repeatedly denied. Think of all the legitimate doctors and researchers today (Dr. Lipkin, OMF and the End ME/CFS Project, etc) who are desperately trying to get funding.

The government is not funding this kind of research (then or now) so Dr. Goldstein worked tirelessly to help his patients and documented it all hoping some day someone else would try to replicate his findings. He is not asking for money and has no hidden agenda or anything to gain.

His theories are too complex for me to understand or explain but he undoubtedly helped many patients who were very ill to feel better.

 

[Hip]

His theories are too complex for me to understand or explain but he undoubtedly helped many patients who were very ill to feel better.

I don't think one necessarily needs to understand the details in his books to speculatively try out some of Dr Goldstein's most recommended drugs (which are listed in this post). I think one could just use a "suck it and see" approach, and test Goldstein's recommended drugs one by one. One can do this under their doctor's watchful eye if necessary.

Since this thread began a few months ago, I have started testing out a few of Goldstein's recommended drugs.

Some I tried did not help all; but then like most ME/CFS treatments, what works for one patient may not work for the next. But this is the virtue of Dr Goldstein's list of drugs: he provides many different drugs that he has observed help ME/CFS patients; this means that if one does not work, you have many more available to try.

In general with ME/CFS treatments, your best bet may be to try as many treatments as you can, because there may be a treatment out there that will work wonders for you personally, but you may not happen upon this drug unless you make the effort to try lots of different ME/CFS drugs (and not just Goldstein's recommended drugs; there are quite a few other ME/CFS drugs and protocols worth trying that are not on Goldstein's list).

I did get some very interesting results from one of Goldstein's drugs I tried: Lamictal (lamotrigine). Soon after starting Lamictal, I found I became quite energetic and enthusiastic about doing various tasks and projects around the house. Here are my notes to myself, written while taking lamotrigine:

Effects of Lamictal (lamotrigine) 12.5 mg daily:

After 3 days of taking lamotrigine:
I noticed that my desire and ability for doing biochemical ME/CFS research, and my desire and ability to lateral think about these biochemical subjects was quite diminished, and instead I wanted to do more simple and physical organizational tasks around the house, like moving furniture, organizing my desk, or house cleaning.

I feel a mild increase in energy levels, less fatigue, and perhaps less brain fog.

Lamictal seems to have a good antidepressant effect, although it did not improve my anhedonia, but has improved my emotional flatness. Sociability seems much improved. Libido also increased a little.

A negative effect of this drug is an increase in sound sensitivity.

I seem to need an hour or so less sleep each night on lamotrigine, I wake up much less groggy, and in a happier mood in the morning. Dreams during the night are more vivid (perhaps this means I get more REM sleep)?


After 5 days of taking lamotrigine:
There definitely seems to be a noticeable increase in the spontaneous desire to chat and socialize with people in the house, in place of my normal desire for social withdrawal and solitude. And the constant ME/CFS irritability and annoyance I get towards people has been largely replaced by tolerance, and even affection.

The increased sound sensitivity problems initially induced by Lamictal have now disappeared.

These are just my early results. I have stopped taking Lamictal for a while, to it give a break, and then will restart it again. I usually start and stop ME/CFS treatments like this, because by starting and stopping, it allows you to better observe the beneficial effects, or any side effects, of the treatment.

I am very grateful to @zzz for making us aware of Goldstein's work, because Goldstein for some reason is not as well known in the ME/CFS community as he should be, and his list of drugs seem to provide many opportunities for improvement and even remission.

It seems to me that many ME/CFS patients may end up getting improvements in their ME/CFS by systematically and speculatively trying Goldstein's drugs out.

 

[zzz]

One thing I have never understood is why, if you had made a ground-breaking discovery in the treatment of a disease that affects people in the hundreds of thousands and perhaps even millions, would you spend a bunch of time writing and promoting multiple books, instead of working to demonstrate and validate the findings such that they can be used in a wider clinical setting and thus potentially improve the lives of vast numbers of people, and all the acclaim and advances in understanding that would inevitably come with that. Something about it just seems wrong, like the Nigerian prince that wants to give you a big pot of money if you'll just transfer some money to them first.

I think that responses of others to this question are quite accurate. In both Betrayal by the Brain and Tuning the Brain, Dr. Goldstein spends many pages explaining why his methods were not adopted by others, as that was a very common question he was asked. Furthermore, Dr. Goldstein addresses the question you asked about his books in the first page of the Forward to Tuning the Brain:

I have learned a great deal about how to treat neurosomatic disorders, and I wish to pass along this knowledge. The best way to accomplish this goal would be an apprenticeship with me, because I have not written down many of my "tricks of the trade." However, such a process is not feasible as I have no means to fund it. Thus, I write books.

If you read the two books that I have mentioned, you will see that Dr. Goldstein's ethics were always of the highest level, and due to his great compassion for his patients, he barely made enough from his practice to survive. And that was in good times. One of the chapters in Tuning the Brain is entitled "Bankruptcy Despite a Three Month Waiting List", which should tell you a lot.

As Dr. Goldstein indicates in the quote above, there is a large amount of knowledge that he has and has never passed on. He has long since retired and is ill health. He was a true genius in his field. I just hope that someone is able to obtain some of this knowledge that he has before it is lost forever.

And I can tell you from my own personal experience that his methods work, and that they work just as well as he claims. Since I am not a doctor, I have to go much more slowly than he did. But I continue to improve with each passing month.

 

[Seven7]

found the 0.1% eyedrop solution here.

That Worked TX!!!!!!

 

[Vic]

@zzz Sorry if you've written this somewhere already, but what are the symptoms you now have since your "relapse" after your 8 year remission?