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

[Hip]

The last thing he told me was "make sure you call me back" after I said that I didn't want to bug him. And Dr. Hyde said that I made him feel a lot better by the complements I gave him.
I'm not sure that's considered badgering, but thank you for bringing it to my attention

Sorry, I apologize, I did not realize he had said that to you. I was just concerned that this poor sick doctor may just want peace and quiet, like us ME/CFS patients often need. But if he seemed to welcome and apprecaite your communications and complements, that's a different context entirely.

 

[Thomas]

Sorry, I apologize, I did not realize he had said that to you. I was just concerned that this poor sick doctor may just want peace and quiet, like us ME/CFS patients often need. But if he seemed to welcome and apprecaite your communications and complements, that's a different context entirely.

I hear ya -- no need to apologize but thank you
And trust me, the rate at which we are trying to contact him would not be offensive.

 

[Peter Hake]

I hear ya -- no need to apologize but thank you
And trust me, the rate at which we are trying to contact him would not be offensive.

Hi, Im a former patient of Dr Goldstein. He treated me for few years in the mid nineties, so I know everything about his treatments, including IV treatments of Ketamine and Lidocaine.
I tried Lidocaine & Ketamine for several months, and the problem is that your body gets used to the medication, so unless you keep moving from one to the other, they wont work for too long.
By the way, I don't think you will find anyone who will be willing to give you the Lidocaine or the Ketamine, after all if it is not done properly, they can cause you a heart attack.

 

[Peter Hake]

If anyone has any questions, feel free to ask. I tried all the treatments that Dr Goldstein had to offer and many more (23 years of CFS gives you a lot of time to search for something that may give you your life back - I'm going to bed now.)

 

[Thomas]

Hi, Im a former patient of Dr Goldstein. He treated me for few years in the mid nineties, so I know everything about his treatments, including IV treatments of Ketamine and Lidocaine.
I tried Lidocaine & Ketamine for several months, and the problem is that your body gets used to the medication, so unless you keep moving from one to the other, they wont work for too long.
By the way, I don't think you will find anyone who will be willing to give you the Lidocaine or the Ketamine, after all if it is not done properly, they can cause you a heart attack.

Thanks for checking in . Sorry that you couldn't find any sustained benefits from his treatments. How long would you try a medication before determining its effectiveness? With almost 100 medications one doesn't have much time...
Which were most effective for you?

As for the IV ketamine and lidocaine there are several clinics here in Toronto that offer it -- they are usually administered mixed together. I'm not too worried about having a heart attack. Were your infusions done over 3 long hours or were you able to do them in less time like say 2 hours?? The clinic I'm going to this week said they could do it for 2 hours or maybe a bit more but 3 hours is a stretch for them to hold a room. So I'm debating if 2 hours is safe enough.

 

[Gingergrrl]

If anyone has any questions, feel free to ask. I tried all the treatments that Dr Goldstein had to offer and many more (23 years of CFS gives you a lot of time to search for something that may give you your life back - I'm going to bed now.)

Hi Peter,

I have a lot of questions but will try to keep it to a minimum!

I was curious if any of the Goldstein treatments worked for you and if so, which ones?

Also, what were your main symptoms and did you get any relief from them?

Do or did you consider yourself cured vs. better but relapsed vs. no improvement etc?

Thanks!

 

[Hip]

If anyone has any questions, feel free to ask. I tried all the treatments that Dr Goldstein had to offer and many more (23 years of CFS gives you a lot of time to search for something that may give you your life back - I'm going to bed now.)

Thanks Peter, I'd like to ask one question if I may:

From you own experience with Dr Goldstein's many drug treatments, and from any knowledge you may have regarding how these treatments worked for other ME/CFS patients, do you feel that his treatments produced long-lasting benefits that would continue for years (provided you kept taking the drugs), or would you say that the benefits often tended to be short-lived, lasting for a few weeks or perhaps a few months, after which the body would no longer respond to the drug, and the benefits would disappear?


I ask this because I actually had an experience of a short-lived benefit from one of Goldstein's top drugs, Wellbutrin (bupropion). When I first started taking it, Wellbutrin worked so well for me that I thought I had found my personal ME/CFS remission treatment. My brain fog was almost entirely banished while taking Wellbutrin, and my mental energy and motivation skyrocketed. However, exactly two weeks after I began taking Wellbutrin, it's very significant benefits just completely disappeared. And I have never been able to get this drug to work for me again, even after a long washout period of not taking it.

Though it has to be said that if you look online, you find mention of the "Wellbutrin honeymoon," which is where some people who take Wellbutrin for depression get two fantastic weeks initially, followed by a complete loss of efficacy of this drug thereafter.

Anyway, that's my story of a short-lived benefit with one of Dr Goldstein's drugs; I have tried a dozen or so other drug on his list of top 23 drugs (given in this post), and most did not provide benefit. The only other one of his drugs that did provide some improvements was lamotrigine (Lamictal), but again these improvements to my ME/CFS symptoms only lasted for a week, and then seemed to disappear.


By complete contrast, @zzz's story is the total opposite: he took just one single dose of isosorbide dinitrate (very similar to nitroglycerin, which is one of Goldstein's drugs), and that put him into full remission from ME/CFS for nearly 8 years, without requiring any further doses of the drug (see his story in this post).

 

[Peter Hake]

Thanks for checking in . Sorry that you couldn't find any sustained benefits from his treatments. How long would you try a medication before determining its effectiveness? With almost 100 medications one doesn't have much time...
Which were most effective for you?
As for the IV ketamine and lidocaine there are several clinics here in Toronto that offer it -- they are usually administered mixed together. I'm not too worried about having a heart attack. Were your infusions done over 3 long hours or were you able to do them in less time like say 2 hours?? The clinic I'm going to this week said they could do it for 2 hours or maybe a bit more but 3 hours is a stretch for them to hold a room. So I'm debating if 2 hours is safe enough.

Hi Thomas, seems to me that you really want to try the IV treatments, so here is all the information that you need to know when it comes to the IV treatments.
I don't think they are worth it to honest with you, but that is for you to decide, so the treatments are intravenous lidocaine, intravenous ketamine, and intravenous thyrotropin releasing hormone.
The lidocaine should be 4% but without preservative and 240 to 480 mg, i.e., 6 to 12 ml, should be added to 500 ml of normal saline and infused over two to three hours.
Ketamine can be given in a dose of 25 to 100 mg in 500 ml of normal saline, infused over three to four hours, titrating the rate of the infusion to any adverse reactions which include wooziness, numbness, nausea, and vertigo.
Thyrotropin releasing hormone may be administered as 1 ml or 500 units mixed with 9 ml of normal saline in a syringe and given by slow IV push over 10 to 15 minutes, according to the patient’s adverse reaction.

Sometimes, lidocaine has to be given three or four times before it becomes effective. All of the large variety of medications work in one way or another to increase signal to noise ratio in the brain because the symptoms are caused by inappropriate gating of internal and external sensory information as well as information from within the brain itself.
Should one or more of these treatments be effective, and they can be combined, one should administer the next treatment when the previous one appears to be wearing off.

I hope this helps Thomas, I will write more as soon as I have the time ( I have a full time job.) Best of Luck!

 

[Avengers26]

@Peter Hake
Hi, Can you please share a bit about your experience with Dr. Goldstein's treatments? What was your experience as his patient? What are your thoughts on them now? Have you come across his other patients who recovered significantly & became primarily asymptomatic? Were a lot of them comparatively high functioning to begin with?

I haven't read his books but I find his limbic system hypothesis very interesting. At the least, i hope this theory is researched more vigorously. There have been some efforts in that direction but they have been few & far between.

 

[Peter Hake]

Hi everybody, I'm going to give my opinion and experience with Dr. Goldstein's treatments and how you can live a life free of all the symptoms that CFS causes (it is all based on my own experience after 23 years of battling with "True CFS.")

Let me start by saying that I was treated by Dr. Goldstein from 1994 to 1998 at his consultation in west Los Angeles, but before I tell you about his treatments I would like to say that he was a really nice guy, humble, hard working, very patient, always trying to help patients as much as possible, and he wasn't someone to whom money was important (I can't remember how many times he didn't charge me, and even then it was only $30 or $40.)

He was completely dedicated to the study of this illness, always trying to do as much research as possible and constantly developing new treatments.
Dr. Goldsteins is the only doctor that I have ever met that really studied, knew and understood this illness (and I've seen many doctors, in both sides of the Atlantic, in these last 23 years.) If you read his books, you will see that the guy really knew what he was talking about.

So, during all those years that I was treated by him, I tried every single treatment! From oral medications to IV injections. And I had the chance to talk to Dr. Goldstein for very long periods of time as well as with many patients at his consultation (sometimes he would give you things to try at home, but most of the time you would sit in a big room with many other patients while he tried different treatments on you.)

I have to be honest now and tell it like it was. Some treatments helped for few hours, others for few days but NOTHING, ON ITS OWN, really ever helped for long periods of time (please do not discourage and keep reading.)

I would like to say that Dr. Goldstein never claimed to cure CFS, and as far as I know, no one has ever been able to get cured from this illness. If you have "True CFS" your life is going to be spent recovering and relapsing, unless you really know what to do (the reason why I say "True CFS" is because there are many people who do not have CFS but are being diagnosed with CFS for lack of knowledge and proper and exhaustive check up by doctors in general. For some doctors, if you feel tired and if you do not have a fever, then you have CFS - I guess this is a discussion for some other time - but even back in 1994, Dr. Goldstein used to say that at least half of his patients did not have "True CFS.")

*To live a life without any symptoms you need to know what "True CFS" is? In a few words, it is an illness of the brain, where the brain has been damaged and as a result it has become vulnerable and overactive/irritated/maybe even inflamed (nothing new, but even the latest studies being done by Dr. Komaroff from Harvard and Dr Montoya from Stanford also confirm this.)

*The number one question for everyone who believes to be suffering from "True CFS" is how to keep the brain from becoming overactive/irritated for the longest period of time. After 23 years with this illness I will tell you that in order to live without any symptoms (that doesn't mean that I am cured) you will need a combination of diet, life style and medications, and if you do what you are supposed to do, I guarantee you that you too will be able to live for very long periods of time without any symptoms, long enough that will even forget that you have the illness.

Having said this, it is important to remember that if you do not do what you are supposed to do, you will get ill again, your brain will always be susceptible and therefore all the symptoms will come back as soon as your brain becomes overactive/irritated again.

I think the only mistake that Dr. Goldstein made during his practice is that he never addressed diet and lifestyle, it was always about the medications, and that is why they never worked for long periods of time. It is possible that he just thought that patients were expecting the drugs to do all the work.

Wel, I hope I've answered most of your questions regarding Dr. Jay Goldstein. I will write more next time, I have to get back to work now. Next time I will talk about "how to keep free of symptoms" "how to have a normal life" and more importantly, "what medications, diet and lifestyle you should follow in order to keep the brain from causing all the symptoms that we, as CFS patients, are so familiar with."

Take care, please do not lose hope and have faith that if you do what you are supposed to do, you too will be able to live a full life (sorry the length of what I've just explained, but it's not a subject that can be explained in few word.)

 

[Gingergrrl]

Peter,

Thanks for your posts and I'm sure you can tell the people in this thread are all intrigued by Dr. Goldstein and wish he was still around. His books are too technically advanced for me but I discuss them with other PR friends who are more sciencey.

Can you share what symptoms you had and the progression of your illness and how Dr. G specifically helped you since you said no treatment lasted more than a few weeks (yet you are working full time and clearly doing better!!)

Also how did Dr. G distinguish "true CFS" from all the other waste basket diagnoses (assuming his pts had tests to rule out other conditions.)

Thanks again!

 

[Lou]

"Diet and lifestyle changes", not what I wanted to hear after all the promise this thread seems to offer. Some, or even many of us, never had a bad diet to begin with or have changed it during the years since becoming ill. Yet we're still ill.

Perhaps Peter will have a new twist that somehow we missed. As to possibly getting well with lifestyle changes, if mine gets any more boring I may wonder what's the point.

Here's hoping Peter will surprise us with something entirely new.

 

[Avengers26]

@Peter Hake
Thanks for the wonderful write up. That seems to be a very honest & fair assessment. I hadn't even heard about him until I recently read this thread. While at first glance, your post might seem discouraging, the fact is your post is a beautiful description of this illness & your post gives me a lot of hope.

For quite some time, I have suspected that an insult to the CNS has happened & an alternative homeostasis has been established. But, our bodies have an amazing ability to heal. What it would need is a complete lifestyle change. That would include medications (eg. antivirals, immune modulators), diet, attitude change (accepting & respecting the illness), thought process change (looking for positivity in everything, avoiding negative people), pacing, addressing things like sleep, HPA axis, avoiding toxins as much as possible etc. etc. The "idea" is to provide the body the environment & the resources to heal & give it time.

And very importantly, to remember, that our brains will always be more susceptible & thus, plan the rest of the life accordingly. If a cure comes along the way, that would be the best thing that can happen, but we shouldn't stop meanwhile from achieving a "better" quality of life. This is my goal & I am very hopeful that i can make this happen over the next few years.

Please do write more at your convenience. I am looking forward to it.

 

[JPV]

I think diet is a big contributing factor, at least in my case.

There's a lot of misinformation and debate about what constitutes a healthy diet. People that think they are on a healthy diet may not be eating as healthy as they think they are. What is beneficial for one person may be a toxin for another.

We are living in a world where our food supply has been dramatically adulterated in various ways. I think, because of various genetic predispositions, that we are just more sensitive than the general population to such things. I'm sure in time, more people will start suffering from similar disease conditions. We are basically the proverbial "canaries in the coal mine".

I'm currently focusing on excluding inflammatory foods and those that I think may be causing allergic reactions. I think I'm dealing with dozens of problem foods that don't seem to have much effect individually but when combined with several other problem foods have a cumulative and dramatic effect.

I think diet is so complex and individually based that you can only use common recommendations as a starting point. The rest has to be determined by time consuming N=1 experimentation.

 

[Hip]

Thank you very much @Peter Hake for your honest account of your experience of the long-term efficacy of Dr Goldstein's ME/CFS treatments.


It's worth quoting your summary of the efficacy of Dr Goldstein's treatments:

I have to be honest now and tell it like it was. Some treatments helped for few hours, others for few days but NOTHING, ON ITS OWN, really ever helped for long periods of time.

Is that lack of long-term efficacy just something you personally experienced, or did other patients of Dr Goldstein also find the benefits of his drugs did not maintain themselves for longer than a few days?

 

[JPV]

After 23 years with this illness I will tell you that in order to live without any symptoms (that doesn't mean that I am cured) you will need a combination of diet, life style and medications,

This is more or less the conclusion that I've come to after 20 years of dealing with this illness. I'm very eager to hear what other information you have to share on the subject.

 

[Gingergrrl]

Peter, I know you are being inundated with questions but did Dr. Goldstein ever talk to you about the effects of mold or other toxins on the brain or gut? I am at the point with such severe MCAS that one wrong move back in May could have killed me (literally) from anaphylaxis whereas at least this level of risk of severity is gone now (I hope!) So, I truly understand the effect of diet issues in this illness at least in my case. I am hoping you can tell your story in parts as you are able.

 

[Peter Hake]

Hi everybody! Thank you for all you questions. I guess the only good thing about having suffered from CFS for 23 year, and having seen so many Doctors and having tried so many different treatment is that I can probably help most of you, and if that is the case, then so much suffering has been worth it!

I will try answering all your question as well as telling you exactly what to do in order to have a life free of all the symptoms that are so familiar and so devastating to all of us.
If I forget some questions please feel free to write me directly and as soon as I have the time I promise I will answer, and if I don't know the answer I'll be the first one to tell you that "I just don't know." And one last thing, I'm not that good when it comes to writing, I'm more of a math person, so please forgive me in advance if I don't express myself that well, but I will try my best.

Before I go any further, let me say that I'm not the kind of person that likes to preach or give false hope to anyone, I know all too well how it feels to be disappointed, especially by Doctor in general (sorry but that is the truth.) I know there is a lot of misinformation out there, a lot, and I also know that there are a lot of people really suffering in need of something that may give them their lives back, so I take this very seriously!
I have been resisting giving any advice for a very long time, I'm just not that kind of person, but two friend that are suffering with "True CFS" kept insisting me to do it, since both of them have completely recovered after they started following my advise (by the way, everything I know about CFS has been through my own experience of the illness, plus years of visiting Doctors, a lot of reading and a lot of trial and error.) So I finally decided to share what I have learned, with the only purpose of helping as many people as possible. And just one last thing, I don't work for any pharmaceutical company, I don't recommend any Doctor in particular and all my advice will always be free!

I will now start answering some questions.

I have gone through every face of CFS, I have been extremely ill, I'm talking about living for very long periods of time from my bed to the couch and even then I was being helped in order to get to the couch. So I truly know what it is to be suffering with "True CFS." So let's talk about what "True CFS" is and how do you determined if you have "True CFS."

So once again, "True CFS" is an illness of the brain, where the brain has been damaged (probably by some type of virus. But I'm not going to get into that long discussion, after all it's irrelevant and what matters is how to get well) and as a result the brain has becomes vulnerable (I will talk later about "vulnerable to what?") which in turn has caused the brain to become overactive/irritated and maybe even inflamed (if there ever was a good description for CFS, this is as good as it gets in my humble opinion.)
Now, how do you determine if you do have "True CFS" given that there is no official test that can determine if you indeed have it? Well, it is not that difficult, you just have to meet a certain criteria.

1) You must be suffering from fatigue for few month, some doctors say at least 6 months. In some cases the fatigue can be very mild and in other cases it can be very severe, and when it's very severe it feels more like you are ill, similar to the flue, except that you do not have fever (in few cases there can be a very mild fever, but it won't last for too long.) The degree of the fatigue depends on the degree of the overactive brain. Obviously, the more overactivity the higher the level of fatigue.

2) Because your brain has become vulnerable, you are suffering from food intolerance and an over sensitivity to chemicals, more specifically to the smell of chemicals (It is well documented that people with "True CFS" suffer from food intolerance and an over sensitivity to the smell of chemicals.)
Please keep in mind that "food intolerance" is very different than "food allergies" (food intolerance does not cause an immunological response in your body, and if it does, it is extremely mild, unnoticeable.) Most people with "True CFS" are unaware that they suffer from food intolerance and in many cases also unaware that they suffer from an over sensitivity to the smell of chemicals, but trust me, if you have been feeling ill for a long period of time, there is a huge chance that some foods, as well as the smell of some chemicals, have been keeping you ill (both, foods and the smell of chemicals in "True CFS patients" are causing the brain to keep being chronically overactive.)
The most common foods that cause food intolerance are the same foods that cause food allergies, such us: All dairy products, all products with Gluten, all fats (regardless is they come from vegetables or animals) and citrus fruits (more specifically Citric Acid.)
The most common chemicals that can cause your brain to become overactive are bleach, ammonia (which is found in paint, among other places) and acetone.

3) If you have "True CFS" then, unless the overactivity of your brain is pretty low at this particular moment, you are experiencing Neurological and Cognitive problems. The most common problems are: Pressure or pain or numbness in your brain, it usually starts on the back of the head (occipital area) and as the overactivity intensifies, it expands to the rest of your head. Problems concentrating, feeling like your head is in a cloud, foggy thoughts, difficulty in finding words, memory problems (short term memory). Difficulty sleeping, you wake up many times and when you do, you stay awake for long periods of time (more the 15-20 minutes) and when the overactivity of the brain is really high you would be lucky to sleep more than few hours, that's if you are able to sleep at all.

4) If you exercise you feel fatigue (ill.) I'm not taking about the kind of tiredness that healthy people get when they exercise, I'm talking about feeling ill, not feeling well after exercising, you know that there is something wrong about the way you feel in general.
Many people can't exercise at all, but when they can, if they go over a certain point (which is different for everyone) they get ill again (as I said earlier, your brain has become vulnerable and the stress that exercise causes in the CNS will cause you to relapse.)

*I'm running out of time for today, so next time I will keep answering questions and I will talk about what medications have worked best for me in helping reduce the overactivity of the brain. But please keep in mind that the recovery of a CFS patient, based on my experience, depends on a combination of Diet, Lifestyle and Medications.

Bye for now (sorry for all my spelling mistakes, I've been writing while trying to do other things and also English has never been my forte.)

 

[MeSci]

@Peter Hake - I'm sure we all appreciate you taking the time to post so much info, but you could get into trouble with the moderators if you post direct advice. I thought it would be good to point this out before you go to a lot of trouble compiling posts that include direct advice. It's OK to say things like "I did this and it helped" or "Some people have found xyz helpful," but you might get moderated if you said "Take xx mg of yyy twice a day."

When you refer to two people having "completely recovered" do you mean that they are no longer vulnerable to relapse?

The brain overactivity you refer to sounds like the theory of a 'gating' abnormality which is discussed in this article. It may perhaps be related to overactive microglia, which are discussed here and here.

The illness that occurs after exertion is called post-exertional malaise (PEM) so you can save time by referring to it as that.

 

[Valentijn]

The illness that occurs after exertion is called post-exertional malaise (PEM) so you can save time by referring to it as that.

To clarify a bit further, PEM is delayed quite a bit, usually hitting approximately 24 hours or more after exertion. It tends to feature exacerbation of neurological and immune symptoms, as well as full-body pain.

"Feeling ill after exertion" sounds more like generic exercise intolerance. We often get that as well, but without the specific PEM form, it isn't ME/CFS.