Gingergrrl
Senior Member
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I agree but how do we do that? We need to confirm some how that he is still alive and where to get a msg to him? I guess @Thomas may learn more as he is trying to call again.
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Dr. Jay Goldstein's Rapid Remission ME/CFS Treatments.
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I agree but how do we do that? We need to confirm some how that he is still alive and where to get a msg to him? I guess @Thomas may learn more as he is trying to call again.
Avengers26
Senior Member
- Messages
- 158
@JPV, Dr. Dupa's review is from November 1998. Sorry, just a small nitpick. But, yes, if someone can find more about him, it would be great.
Sorry, i don't want to sound selfish but can we think of some questions to ask Dr. Goldstein if @Thomas is able to speak to him (provided of course, his health permits him). I will have to think more on this but one question that i can think of right now is, What are his views today on ME/CFS treatment from the last time he practiced & what would he have done differently today? Again, @Thomas please only ask if you think it's a good question (for the limited time you might have with him on the phone) & you think he wouldn't mind you picking his brain.
@MeSci, yes, a collective message of appreciation would be wonderful.
Sorry, i don't want to sound selfish but can we think of some questions to ask Dr. Goldstein if @Thomas is able to speak to him (provided of course, his health permits him). I will have to think more on this but one question that i can think of right now is, What are his views today on ME/CFS treatment from the last time he practiced & what would he have done differently today? Again, @Thomas please only ask if you think it's a good question (for the limited time you might have with him on the phone) & you think he wouldn't mind you picking his brain.
@MeSci, yes, a collective message of appreciation would be wonderful.
- Messages
- 11
Hello everybody
As I promised on my previous post, today I'm going to talk about two drugs and another treatment.
I'll do my best not to give direct advice, but if I do please forgive me and just remember that everything that I write is just based on my experience with this illness since I was diagnosed in 1992.
I have mentioned before that in my opinion (and in the opinion of few other Doctors, including Dr Goldstein,) CFS is an illness of the brain, where this one has become vulnerable and as result, the brain has become overactive/irritated and maybe even inflamed. So all the treatments given by Dr Goldstein where directed at reducing that overactivity and bringing the brain under control.
The most effective medication that I have ever tried (prescribed to me by Dr Goldstein) is Chloral Hydrate.
Chloral Hydrate is the only drug that I've ever tried, that really brings the overactivity of the brain down!
Chloral Hydrate is a very old drug that works on the CNS, it reduces the activity of the brain and it works very differently that Benzodiazepines or Antiepileptics. It is usually found in capsule (soft gel capsule) and in syrup (it doesn't taste good.)
I have never taken Chloral Hydrate for more than 4-8 weeks, your body gets used to it pretty rapidly and it no longer works, but it's usually more than enough time to cause the brain to relax. The dosage that I've always taken is 500mg to 1000mg always at night, and it doesn't give you a hangover when you wake up.
Chloral Hydrate is so effective at bringing the activity of the CNS down, that after few weeks it can also make you feel more tired, but as soon as you stop taking it, your energy goes back to normal and your brain doesn't go back to being overactive (in my case, as long as I avoid the foods that I'm sensitive to, as well as avoiding smelling chemicals and being careful when I start exercising, I can have a normal life without any symptoms.)
I could write a lot more about Chloral Hydrate but I don't want to sound like I'm giving advice, so do your own research and please talk to a Doctor before taking Chloral Hydrate, you will need a prescription anyway. It is not expensive.
The second drug is Nexavir (formerly Kutapressin.) I'm sure you have heard of it. It was prescribed to me for the first time by Dr. Goldstein.
I spent few years taking Nexavir (2ml per day) and from my experience it helps a lot with problems of food sensitivities. I was able to eat whatever the hell I wanted when taking Nexavir without relapsing.
I don't think anyone really knows how Nexavir works, but some Doctors (including Dr. Goldstein) believe that it has an effects on the immune system and it can also work as an anti-inflammatory.
For many year now, whenever I have relapsed (most of the time from smelling Chemicals by accident, it's almost impossible not to smell anything at some point ((like paint)), and only few times from exercising too intensively,) I take Chloral Hydrate, 1 gram, for 4-8 weeks and 2 ml of Nexavir a day (injected of course) for 12 weeks, and I also watch everything that I eat (I avoid all that I'm sensitive to) and since when I have relapsed I'm usually unable to get out of the house, I don't have to worry about smelling any chemicals.
By doing this, I am always able to get back to a normal lifestyle within 12 weeks (the two people that I mentioned that have also recovered, they followed this protocol as well, exactly the same.)
*Now, if you are absolutely sure that you are suffering from "True CFS" and in your case, you don't think that food sensitive is a problem or you are taking care if, and when you smell a chemical you don't experience any worsening of your symptoms, but you continue feeling extremely fatigue, then you may find the following interesting.
In 1995, when I was visiting a relative in the UK, I found out that a group of Doctors were looking for patients with ME (CFS) in order to conduct research.
The research was directed at the use of Hydrotherapy as a treatment for CFS patients and I was able to take part of that study.
The first day they took a blood test, they checked your bone density and you took an EEG, among few other tests, and you had to answer a bunch of questions. You then agreed to do the Hydrotherapy (I will describe in a minute) everyday and come back for a check up every 3 months.
The Hydrotherapy involved getting in a bathtub with cool water. You started at 24°C, around 75°F, and you stayed in the water for 5 minutes. The next day 6 minutes, the next day 7 minutes and so on until you reached 20 minutes. When you reached 20 minutes you lower the temperature of the water by one degree Celsius, to 23°C (about 73° Fahrenheit) and you started with 5 minutes again, the next day 6 minutes and so on, until you reached 20 minutes. And then you lower the temperature of the water by 1 degree Celsius again, and you started again with 5 minutes.
You were supposed to stop lowering the temperature of the water when all your symptoms had disappeared. In my case that happened at 18°C (around 64° Fahrenheit.) I became almost addicted to feeling so energized and my brain cleared so much, it was awesome! But I have to admit that getting in a bathtub, everyday of the week, in water at 64°F (18°C) is not easy! But well worth for me!
The Doctors that were conducting the study believed that exposing your body to cool water on a regular basis, had a beneficial effect on the immune system, as well as increasing blood flow to the brain.
I don't know how many people participated in that study, they ran out of money after 9 months I think, but I do remember talking to few patients when we went back for the first check up after 3 months and all of them were feeling super energized and with a very clear brain.
I also have to say that a good number of patients dropped from the study, as I said, it is not easy getting your body in cool water everyday.
One last thing about my experience with Hydrotherapy, it is important to do it very gradually, you can relapse if all of the sudden you get in cold water and you give your body a sock! Not a smart thing to do.
By the way, your skin becomes paper thin, it is the most effective way of burning whatever fat you have. And when you get out of the bathtub, for the first 30 minutes you pee almost nonstop (that is just because a lot of blood has been filtered by your kidneys in a short period of time.)
Well, I hope some of you will find this information helpful. Please take care.
Next time I will talk about a new treatment that I haven't tried, simply because I have been feeling very well, but I truly believe that it has the potential of helping a good number of people that haven't found any relief so far. Maybe someone out there has already tried it and would like to share it with us.
Please excuse me, I really need to get going now. Take care.
P.S.: I hope I haven't given any direct advice?
As I promised on my previous post, today I'm going to talk about two drugs and another treatment.
I'll do my best not to give direct advice, but if I do please forgive me and just remember that everything that I write is just based on my experience with this illness since I was diagnosed in 1992.
I have mentioned before that in my opinion (and in the opinion of few other Doctors, including Dr Goldstein,) CFS is an illness of the brain, where this one has become vulnerable and as result, the brain has become overactive/irritated and maybe even inflamed. So all the treatments given by Dr Goldstein where directed at reducing that overactivity and bringing the brain under control.
The most effective medication that I have ever tried (prescribed to me by Dr Goldstein) is Chloral Hydrate.
Chloral Hydrate is the only drug that I've ever tried, that really brings the overactivity of the brain down!
Chloral Hydrate is a very old drug that works on the CNS, it reduces the activity of the brain and it works very differently that Benzodiazepines or Antiepileptics. It is usually found in capsule (soft gel capsule) and in syrup (it doesn't taste good.)
I have never taken Chloral Hydrate for more than 4-8 weeks, your body gets used to it pretty rapidly and it no longer works, but it's usually more than enough time to cause the brain to relax. The dosage that I've always taken is 500mg to 1000mg always at night, and it doesn't give you a hangover when you wake up.
Chloral Hydrate is so effective at bringing the activity of the CNS down, that after few weeks it can also make you feel more tired, but as soon as you stop taking it, your energy goes back to normal and your brain doesn't go back to being overactive (in my case, as long as I avoid the foods that I'm sensitive to, as well as avoiding smelling chemicals and being careful when I start exercising, I can have a normal life without any symptoms.)
I could write a lot more about Chloral Hydrate but I don't want to sound like I'm giving advice, so do your own research and please talk to a Doctor before taking Chloral Hydrate, you will need a prescription anyway. It is not expensive.
The second drug is Nexavir (formerly Kutapressin.) I'm sure you have heard of it. It was prescribed to me for the first time by Dr. Goldstein.
I spent few years taking Nexavir (2ml per day) and from my experience it helps a lot with problems of food sensitivities. I was able to eat whatever the hell I wanted when taking Nexavir without relapsing.
I don't think anyone really knows how Nexavir works, but some Doctors (including Dr. Goldstein) believe that it has an effects on the immune system and it can also work as an anti-inflammatory.
For many year now, whenever I have relapsed (most of the time from smelling Chemicals by accident, it's almost impossible not to smell anything at some point ((like paint)), and only few times from exercising too intensively,) I take Chloral Hydrate, 1 gram, for 4-8 weeks and 2 ml of Nexavir a day (injected of course) for 12 weeks, and I also watch everything that I eat (I avoid all that I'm sensitive to) and since when I have relapsed I'm usually unable to get out of the house, I don't have to worry about smelling any chemicals.
By doing this, I am always able to get back to a normal lifestyle within 12 weeks (the two people that I mentioned that have also recovered, they followed this protocol as well, exactly the same.)
*Now, if you are absolutely sure that you are suffering from "True CFS" and in your case, you don't think that food sensitive is a problem or you are taking care if, and when you smell a chemical you don't experience any worsening of your symptoms, but you continue feeling extremely fatigue, then you may find the following interesting.
In 1995, when I was visiting a relative in the UK, I found out that a group of Doctors were looking for patients with ME (CFS) in order to conduct research.
The research was directed at the use of Hydrotherapy as a treatment for CFS patients and I was able to take part of that study.
The first day they took a blood test, they checked your bone density and you took an EEG, among few other tests, and you had to answer a bunch of questions. You then agreed to do the Hydrotherapy (I will describe in a minute) everyday and come back for a check up every 3 months.
The Hydrotherapy involved getting in a bathtub with cool water. You started at 24°C, around 75°F, and you stayed in the water for 5 minutes. The next day 6 minutes, the next day 7 minutes and so on until you reached 20 minutes. When you reached 20 minutes you lower the temperature of the water by one degree Celsius, to 23°C (about 73° Fahrenheit) and you started with 5 minutes again, the next day 6 minutes and so on, until you reached 20 minutes. And then you lower the temperature of the water by 1 degree Celsius again, and you started again with 5 minutes.
You were supposed to stop lowering the temperature of the water when all your symptoms had disappeared. In my case that happened at 18°C (around 64° Fahrenheit.) I became almost addicted to feeling so energized and my brain cleared so much, it was awesome! But I have to admit that getting in a bathtub, everyday of the week, in water at 64°F (18°C) is not easy! But well worth for me!
The Doctors that were conducting the study believed that exposing your body to cool water on a regular basis, had a beneficial effect on the immune system, as well as increasing blood flow to the brain.
I don't know how many people participated in that study, they ran out of money after 9 months I think, but I do remember talking to few patients when we went back for the first check up after 3 months and all of them were feeling super energized and with a very clear brain.
I also have to say that a good number of patients dropped from the study, as I said, it is not easy getting your body in cool water everyday.
One last thing about my experience with Hydrotherapy, it is important to do it very gradually, you can relapse if all of the sudden you get in cold water and you give your body a sock! Not a smart thing to do.
By the way, your skin becomes paper thin, it is the most effective way of burning whatever fat you have. And when you get out of the bathtub, for the first 30 minutes you pee almost nonstop (that is just because a lot of blood has been filtered by your kidneys in a short period of time.)
Well, I hope some of you will find this information helpful. Please take care.
Next time I will talk about a new treatment that I haven't tried, simply because I have been feeling very well, but I truly believe that it has the potential of helping a good number of people that haven't found any relief so far. Maybe someone out there has already tried it and would like to share it with us.
Please excuse me, I really need to get going now. Take care.
P.S.: I hope I haven't given any direct advice?
Violeta
Senior Member
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AaroninOregon
noob
- Messages
- 170
- Location
- Hippietown
I imagine it's hard to find a doctor willing to prescribe it these days, and to find a pharmacy that can/will fill a prescription
@Peter Hake that's interesting. I've never come across chloral hydrate in any of the Goldstein books. And I just checked all the indexes. But just goes to show you how everyone is different and how Dr. Goldstein needed to find the right drug(s) for every patient.
Great that your two friends also did well on chloral and nexavir. I haven't tried either yet. Chloral is not a controlled substance in Canada but does require a Rx to obtain.
Great that your two friends also did well on chloral and nexavir. I haven't tried either yet. Chloral is not a controlled substance in Canada but does require a Rx to obtain.
Avengers26
Senior Member
- Messages
- 158
@Peter Hake I will have to read your post again later to completely grasp it. But, I remember, someone on Cort's website, posted that LDN & Kutapressin injections (at Dr. Enlander's office?) has changed her life. She's not cured but so much better.
Some people here have been benefited by Hydrotherapy. I have never it done myself. I will add it to my "to try in future" list. I will later on check if the hydrotherapy you mention is the same as what some others were doing on one of the threads here on hydrotherapy.
Some people here have been benefited by Hydrotherapy. I have never it done myself. I will add it to my "to try in future" list. I will later on check if the hydrotherapy you mention is the same as what some others were doing on one of the threads here on hydrotherapy.
Sushi
Moderation Resource Albuquerque
- Messages
- 19,935
- Location
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This is very interesting to me. Nexavir helps me a lot but currently it is hard to get. Nexco Pharma has stopped making it and a lot of us are begging for the last few vials. I just spoke to them and they will try to start making it again in a couple of months--maybe.
Alternatively, a compounding pharmacy is making it as a gel and says it is effective and more alternatively Nexco is starting to make it as a liposomal oral product though I don't think this is available yet.
My doctor agrees that it is a lot more than an antiviral.
- Messages
- 11
I know doctors are not used to prescribing Chloral Hydrate, it is a very old drug, but I've never had any problems with it.
As I said, after you've been taking it for several weeks you can start to feel a bit tired, a different kind of tiredness than the one that you have from the CFS, but it goes away very rapidly as soon as you stop taking it.
I have tried many Antiepileptics and a good number of Benzodiazepines and I've never had any benefit from them, quite the contrary! There have been a couple of Antiepileptics that as soon as I took them made me feel as if the floor and the walls were moving around me, it was really scary!!
I also know that Dr Goldstein prescribed Chloral Hydrate for a good number of patients, I wasn't the only one, and he never told me to be careful with it or anything like that. The first time he gave it to me, he even gave me some samples to take home with me and since it worked so well he just gave me a prescription for a bottle of 100 capsules, which is a lot!
By the way, I never bought too many capsules at a time, the active compound can deteriorate pretty quickly.
nandixon
Senior Member
- Messages
- 1,092
My sleep doctor prescribed chloral hydrate (liquid form) a few years ago and it was probably the best sleep med I've ever tried in terms of effectiveness and lack of residual effects (and that includes Xyrem/GHB).
But unfortunately tolerance to it quickly developed in just a few days (as happened with Xyrem in my case). I did continue to try to use the chloral hydrate infrequently (once a week or so) but stopped after a few months because there seemed to be at least some concern in the medical literature for potential genotoxicity and carcinogenicity, and I have a strong family history of cancer.
However, it never occurred to me to keep using it continuously/daily for several weeks as @Peter Hake did, since its sleep-inducing effect was no longer present. The small risk of using it for 4-8 weeks might have been worth it for a potential remission.
Very interesting and thanks for posting your experiences @Peter Hake.
But unfortunately tolerance to it quickly developed in just a few days (as happened with Xyrem in my case). I did continue to try to use the chloral hydrate infrequently (once a week or so) but stopped after a few months because there seemed to be at least some concern in the medical literature for potential genotoxicity and carcinogenicity, and I have a strong family history of cancer.
However, it never occurred to me to keep using it continuously/daily for several weeks as @Peter Hake did, since its sleep-inducing effect was no longer present. The small risk of using it for 4-8 weeks might have been worth it for a potential remission.
Very interesting and thanks for posting your experiences @Peter Hake.
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This is the conclusion of one study regarding Chloral Hydrate and Cancer.
Conclusions: "To our knowledge, this is the first study to examine the relationship between chloral hydrate exposure and cancer risk in humans. There was no persuasive evidence to support a causal relationship between chloral hydrate exposure in humans and the development of cancer. However, statistical power was low for weak associations, particularly for some of the individual cancer sites. Although animal data using much higher doses of chloral hydrate have demonstrated its genotoxicity and carcinogenicity, the effects of chloral hydrate in humans are still uncertain."
Violeta
Senior Member
- Messages
- 2,952
Does chloral hydrate basically work like chloroform, or does it simply reduce to chloroform after ingestion?
Chloral hydrate is produced from chlorine and ethanol in acidic solution. In basic conditions the haloform reaction takes place and chloral hydrate is decomposed byhydrolysis to form chloroform.[10]
Chloral hydrate is produced from chlorine and ethanol in acidic solution. In basic conditions the haloform reaction takes place and chloral hydrate is decomposed byhydrolysis to form chloroform.[10]
Lou
Senior Member
- Messages
- 582
- Location
- southeast US
Thank you, @Peter Hake for all the information you take the trouble to pass along. It's been discussed here that dosing of these medicines is all important, that it's likely if you take too much or take too quickly the medicine may be forever lost as a benefit.
Do you have thoughts on whether this may likewise apply to hydrotherapy? I wish to try it as you describe but previously have done ice baths which would seem to be an extreme version that may, if 'dosing' applies here as well, limit or preclude any benefit from the hydrotherapy.
I suppose your most obvious answer will be try it and see, but still I ask in case you can offer other insights before I invest the time and effort. Thanks.
Do you have thoughts on whether this may likewise apply to hydrotherapy? I wish to try it as you describe but previously have done ice baths which would seem to be an extreme version that may, if 'dosing' applies here as well, limit or preclude any benefit from the hydrotherapy.
I suppose your most obvious answer will be try it and see, but still I ask in case you can offer other insights before I invest the time and effort. Thanks.
Avengers26
Senior Member
- Messages
- 158
Would it be possible to do such hydrotherapy at home? How will one ensure such precise lowering of temperature by 1 degree fahrenheit ?
Gingergrrl
Senior Member
- Messages
- 16,171
@Lou or @Peter Hake Thank you and do we know why taking much or too quickly of these meds may lose the benefit forever? I had this experience with a very low dose of Valcyte (not from Goldstein's books) but I started with a super low dose and got some benefits and raised it (while still quite low dose) but raised it and then got intolerable side effects and have tried it two more times but cannot tolerate it at any dose no matter how small. This would fit with Goldstein's theories but for other meds, I have raised the dose to where it needs to be and not had issues. How do we know which meds this applies to and which it does not?
MeSci
ME/CFS since 1995; activity level 6?
- Messages
- 8,231
- Location
- Cornwall, UK
I've been thinking about this too. I think we should have a thread specifically on this topic. It is likely to vary between different people, but we might be able to get some kind of handle on it.
I had a dramatic boost soon after starting a supplement (alpha-lipoic acid and acetylcarnitine) - physical energy and mental clarity - and was getting cautiously excited about the prospects of significant improvement in daily function - but it only lasted a few hours. But these dramatic improvements do serve to indicate that nothing is permanently broken, and if we could just unlock that potential we could be so much better.
Agreed very much. I've had this experience several times now with various supplements including ALA. Such experiences have been very useful for keeping my morale up since they suggest that my illness, no matter how disabling at present, may not be permanent. These reactions make me think that our energy production is functionally inhibited for some reason, not the result of permanent damage to the body. If the body is capable of functioning at a normal level for even just a few hours then it demonstrates that restoration of normal function is at least theoretically possible.
MeSci
ME/CFS since 1995; activity level 6?
- Messages
- 8,231
- Location
- Cornwall, UK
I have found a few threads on remission, but most are reports of specific personal experiences. So I have started a new one which I hope will focus on what remissions might mean, and how unusual is the phenomenon of remission in chronic illness. It's here.
No lasting benefits is my experience as well...scores of times, to scores of medications/supplements. Intuitively I believe that our bodies/brains have adjusted themselves in defense of some underlying condition. If we try to reset the downstream effects without fixing the underlying condition, our bodies just find another way to readjust in defense. I've come to believe that trying to force these "instant remissions", which are more like momentary cancellations, does more harm than good.
Hip
Senior Member
- Messages
- 17,874
In what way do you think they are harmful?
I agree, though, that it almost seems as if there is an "illness homeostasis" in ME/CFS, such that if you take any medications that alter the equilibrium point in your body, and thereby move this equilibrium towards a state of better health, a counterbalancing reaction seems to quickly kick in that pushes you back into the original state of illness!
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