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

[Violeta]

I think @Peter Hake is hitting the nail on the head. I understand that we would all want to have a magical medication that would solve everything, but I truly think that would be very unrealistic. So I'm going to focus on everything that @Peter Hake talked about and hope for the best.
I really look forward to everything that he has to say regarding medications.
Thank you so much for taking the time to trying to help all of us!

Welcome to Phoenix Rising, Silvana.

 

[Gingergrrl]

I am hoping that someone can confirm if he is indeed deceased as other websites once linked to a site that said he was deceased *before* Thomas spoke with him so the info was so unclear. Although if Erica Verrillo is reporting it, than it may indeed be true.

I had hoped along with some other members on this thread that Dr. Goldstein would some day share his experiences with some of the current docs like Montoya or OMI but I guess this was not meant to be. It is not that I believe that one person holds the cure (I do not) but had hoped that the extensive work that he did in the 80's and 90's was not for nothing and that a collaboration of knowledge would occur.

I am also interested in Peter Hake's experiences and do not take it as medical advice, just want to know what symptoms he had, how Goldstein helped him (or didn't help him) and how we can learn from it and discuss it.

Lastly, I hope your infusion goes well @Thomas. I have some reservations about it but that is b/c I had a horrible experience with IV fluids that most likely does not pertain to anyone else. I would need an extra slow infusion (like six hours) if I were to attempt this but I am probably in a different sub-group (or whatever you want to call it) than you are. My very best wishes to you for the procedure.

 

[Avengers26]

God bless his soul if Dr. Goldstein did indeed pass away. My prayers & wishes for him. I am glad @Thomas got to speak to him at least once. I bet it would have meant the world to him to know that this community appreciates him for dedicating his life towards helping CFS patients achieve a better quality of life & as i see, some did actually recover fully.

 

[MeSci]

If Dr Goldstein is deceased, hopefully there will be prominent tributes to him from the ME community. Like Sarah Myhill (not perfect, but also put her licence/career on the line by offering and providing treatments that were not officially approved, thereby helping a lot of patients, I believe) he put patients above officialdom - a brave and self-sacrificial stance to take. I think there is a memorial thread on PR (but can't find it) but maybe Dr Goldstein should have his own?

 

[Avengers26]

I have been reading this article. It mentions the Zinn's & the Japanese study. Also, Dr. Bateman talks about exploring the possibility of inflammation spreading down to the lower parts of the brain which controls hormones. I have this hunch that Dr. Goldstein was definitely on to something.

I would request everybody to at least casually bring this up with their doctors (of course without offending them) & hope they can get some researchers interested in further exploring the idea of "limbic encephalitis". They can at least read Dr. Goldstein's books & are free to make their own opinion. Now, the idea may be right or may be wrong, but it is definitely persuasive & needs to be explored more.

Autoimmunity & limbic encephalitis are imo, two of the topmost "ideas" that researchers can get rich dividends in the field of ME/CFS, which in turn, will benefit us. Not that, they are necessarily exclusive.

Now, as to what's causing it. It could be the viruses, toxins, mix of factors etc. etc. in genetically susceptible individuals. Whether there will be a cure for this illness in the near future? May be. But, that shouldn't be an excuse for targeting symptomatic relief to help patients recover significantly or even fully. The second thing is precisely what imo, Dr. Goldstein seemed to be doing. (P.S. I haven't read his books yet).

Here's one quote from the article -

"Calling neuroinflammation in the brain the equivalent of autoimmunity in the body, and stating that we know the microglia are activated in ME/CFS, Dr. Bateman proposed that inflammation in the core of the brain ( limbic encephalitis) causes a cascade of problems going both ways – up into the cortex and down into the hypothalamus, thalamus, and pituitary and the autonomic nervous system".

Here's the article -

http://www.cortjohnson.org/blog/201...ng-chronic-fatigue-syndrome-dr-bateman-talks/

 

[Gingergrrl]

If Dr Goldstein is deceased, hopefully there will be prominent tributes to him from the ME community. Like Sarah Myhill (not perfect, but also put her licence/career on the line by offering and providing treatments that were not officially approved, thereby helping a lot of patients, I believe) he put patients above officialdom - a brave and self-sacrificial stance to take. I think there is a memorial thread on PR (but can't find it) but maybe Dr Goldstein should have his own?

I agree we should have a tribute to him in the memorial threads if we could confirm for certain that he passed away. I think the link may be the same one that Pro health quoted before which stated incorrectly that he had passed away. I really do not know but it sounds like Dr. Hyde would know for sure and maybe could confirm with @Thomas later?

 

[Sushi]

I think there is a memorial thread on PR (but can't find it) but maybe Dr Goldstein should have his own?

We will certainly create a memorial thread for him if it is confirmed that he is deceased.

 

[Thomas]

I can't confirm anything and Dr. Hyde is in Europe for 3 months.

In other news -- I went to the clinic for my infusion and they refused to do the infusion in any time longer than 45-60 minutes. So I chickened out and said I would think about it and maybe re-schedule. What do you think? Best not to risk it and then the drugs never working for me again.

The doses are smaller than Goldstein uses for both the lidocaine and the ketamine. Do you think that matters?

 

[JPV]

In other news -- I went to the clinic for my infusion and they refused to do the infusion in any time longer than 45-60 minutes. So I chickened out and said I would think about it and maybe re-schedule. What do you think? Best not to risk it and then the drugs never working for me again.

I think that it was a wise decision to not proceed with the treatment. Goldstein seems to have been extremely knowledgable about administering such drugs. I wouldn't expect doctors, that are unfamiliar with his work, to be able to replicate his procedure properly.

 

[Gingergrrl]

I can't confirm anything and Dr. Hyde is in Europe for 3 months.

In other news -- I went to the clinic for my infusion and they refused to do the infusion in any time longer than 45-60 minutes. So I chickened out and said I would think about it and maybe re-schedule. What do you think? Best not to risk it and then the drugs never working for me again.

The doses are smaller than Goldstein uses for both the lidocaine and the ketamine. Do you think that matters?

@Thomas, I would not do it but that is just me. My MCAS doc said I should not have any infusions faster than six hrs and if Goldstein said 2-3 hrs than there must be a reason (and that is for someone I assume without MCAS.) also if this clinic is that rigid that they cannot accommodate a reasonable request from a pt, I would be leery of them in general. Just my two cents!

 

[Sidereal]

I wouldn't do it. Dr Goldstein had extensive clinical experience with lidocaine and ketamine in ME/CFS patients and he was adamant about the dosing schedule. No way would a doctor insist on the extra hassle of 2-3 hour dosing if 45-60 mins were ok.

 

[Thomas]

Thank you all kindly for the replies. I'm going to try to get my physician to call them and ask for a special request, but I'm not holding my breath. I was so close to just doing the infusion their way after they told me they infuse 90 year olds who weigh 80 pounds that can handle it lol. I told him I had ME and that my brain was super stimulated and my nervous system is very sensitive. He respected that but still held firm on his reluctance.
I wonder if you did a half dose if you could cut the infusion time down? Or perhaps it's not the dose amount but rather the rate at which it enters your bloodstream...

Sucks either way -- I was SO looking forward to this therapy even if it did only work for a short while, it would certainly bring some perspective to my unrelenting ME

 

[JPV]

A doctor named Joseph R. Duba (in NY) posted a review on Amazon.com, about Goldstein's book "Betrayal by the Brain", where he expressed an interest in employing some of Goldstein's therapies in his practice. Maybe he's worth looking into. At least he's read Goldstein's books and seems to be familiar with his work.

 

[zzz]

The only place where Dr. Goldstein's death was reported was Erica Verrillo's Web site - the same Web site that erroneously reported his death last year.

Once again, her page on Dr. Goldstein has reverted from saying that he is deceased to saying that he is retired. As there were no reports of his death anywhere else, I think that we can assume that he is still alive at this point. I admire Erica's work tremendously, but she seems to have made this mistake twice now.

@Thomas, I would encourage you to keep trying to contact Dr. Goldstein, especially since he requested you to do so. Although he is apparently still alive, we know that his health is extremely poor, and we don't know how much time he has left.

As for your ketamine and lidocaine IV infusions, I would reiterate the advice of others. I think that @Sidereal put it most succinctly:

I wouldn't do it. Dr Goldstein had extensive clinical experience with lidocaine and ketamine in ME/CFS patients and he was adamant about the dosing schedule. No way would a doctor insist on the extra hassle of 2-3 hour dosing if 45-60 mins were ok.

 

[Thomas]

The only place where Dr. Goldstein's death was reported was Erica Verrillo's Web site - the same Web site that erroneously reported his death last year.

Once again, her page on Dr. Goldstein has reverted from saying that he is deceased to saying that he is retired. As there were no reports of his death anywhere else, I think that we can assume that he is still alive at this point. I admire Erica's work tremendously, but she seems to have made this mistake twice now.

@Thomas, I would encourage you to keep trying to contact Dr. Goldstein, especially since he requested you to do so. Although he is apparently still alive, we know that his health is extremely poor, and we don't know how much time he has left.

As for your ketamine and lidocaine IV infusions, I would reiterate the advice of others. I think that @Sidereal put it most succinctly:

Yes @Sidereal has a way with words indeed. Very clear and to the point and I appreciate the feedback.

Oh I didn't realize EV had made this error before and that the page has been changed back. That is good news. I will definitely try him again this weekend but I have the feeling that he is quite ill and may be unable to speak. But I will try and hopefully connect with him.

Today was a very tiring and frustrating experience. It wasn't like I was asking for extra ketamine or for a short drip time. Why have to suffer the pain of side effects like sky rocketing blood pressure or worse before they will slow down the drip rate, just because they don't believe that I know my body and my disease better than they do? Oh well, that's life of an ME patient and a frustration we all have had to deal with in one way or another. But I just wasted a klonopin and a lot of anxious energy. Anyways...

I actually have the bottle of lidocaine on me, just obviously not the ketamine. Wondering if I should ask a nurse or doctor friend to mix it up with saline and infuse it properly if this clinic won't. Hmmm We'll see. It's got a 1 year shelf life.

 

[JPV]

I actually have the bottle of lidocaine on me, just obviously not the ketamine. Wondering if I should ask a nurse or doctor friend to mix it up with saline and infuse it properly if this clinic won't. Hmmm We'll see. It's got a 1 year shelf life.

I wouldn't mess with these sorts of treatments without a doctor that doesn't have much experience using them.

From what I've read, Goldstein was really an expert with such exotic treatments. It sounds like he was very well versed in the signs of a negative reaction, and if needed, knew how to administer various antidotes to correct them.

@Peter Hake was pretty clear that he thought most of these treatments didn't provide lasting relief. If that's the case, I'm not really sure that the risk is worth taking anyway. I know I wouldn't do it.

 

[Thomas]

I wouldn't mess with these sorts of treatments without a doctor that doesn't have much experience using them.

From what I've read, Goldstein was really an expert with such exotic treatments. It sounds like he was very well versed in the signs of a negative reaction, and if needed, knew how to administer various antidotes to correct them.

@Peter Hake was pretty clear that he thought most of these treatments didn't provide lasting relief. If that's the case, I'm not really sure that the risk is worth taking anyway. I know I wouldn't do it.

Good point. Thanks.

 

[MeSci]

It must have taken a lot of willpower not to go ahead with the infusion as it was offered, @Thomas - so well done.

 

[Peter Hake]

God bless his soul if Dr. Goldstein did indeed pass away. My prayers & wishes for him. I am glad @Thomas got to speak to him at least once. I bet it would have meant the world to him to know that this community appreciates him for dedicating his life towards helping CFS patients achieve a better quality of life & as i see, some did actually recover fully.

I totally agree! What a wonderful man and what a great Doctor. I'm really sad to hear that he may have passed away. I do know that he had been sick for quite sometime. My heart goes out to his lovely family.
He was always there for me when he was treating me. I have to thank him again for never giving up on me, for taking so much time to explain things to me and for giving me so much hope when I first got diagnosed (I'm not sure I would have made it back then without him.)

 

[MeSci]

If Dr Goldstein is still alive, maybe it would be nice to give him a collective message of appreciation - while he is still here to benefit from it.

It often saddens me how lots of people emerge to say how wonderful someone was and how they helped them - after the person has died.