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

[Sidereal]

Thanks @Sidereal i don't know much about methylation and that realm of the ME therapies but do my symptoms I described above sound consistent with what an adverse reaction to B vitamins and/or vitamin c would be?

Any of those B vitamins could have made you worse. Many here feel awful with tiny oral doses let alone IV. Why mess around that stuff? If it worked we'd all know about it.

 

[Thomas]

Any of those B vitamins could have made you worse. Many here feel awful with tiny oral doses let alone IV. Why mess around that stuff? If it worked we'd all know about it.

I know. My B vitamin experiments in the past weren't successful. He didn't tell me they were in there til after the infusion. Thanks pal but too late now. I wonder why Goldstein loved this therapy -- I'm yet to encounter anyone who's made substantial gains from IV Ascorbate.

 

[Sidereal]

I'd stay away from this "doctor".

 

[Dufresne]

I've not done IV ascorbate, but taking the oral stuff in high doses has made me feel a whole lot better. It's one of the few antioxidant therapies that doesn't paradoxically oxidize me. The downside is I haven't been able to sustain the effect. As I wrote earlier in this thread I'm interested in trying it alongside methylfolate and HB12 as Martin Pall suggests. His explanation of the energy problem has always rung true to me.

@Thomas, of course there's the redundant explanations that you killed something off or mobilized toxins. You'll have to experiment further with it to get a better sense of what might be going on. Certainly try it without the B vitamins. You might also just want to go with oral ascorbate in high doses. Pall says a lot of it can get used up in the gut if it's really corrupted, but I know you've a scoundrel of a gut and this might not be such a bad thing. At the very least it's a great flush.

 

[zzz]

I tried calling Goldstein the other day but there was no answer.

Thanks for trying, @Thomas! I can understand your reluctance to call, but I do hope you keep trying. Even in Dr. Goldstein's current state, he can answer questions for us that no one else can - mainly relating to any writings that he may be able to make available to us.

And I really do think that these calls cheer him up. He must be so isolated there.

But I have a question: I've done 2 IV ascorbate sessions as per the Goldstein protocol and it has either done nothing or made me feel worse (is that even possible?). 20grams of vit c but the naturopath also forgot to tell me that he put b vitamins in there as well.

I felt good the during the day/night after the infusion but since the next day and today I feel very flu like and toxic since receiving the second one two days ago. Thoughts?

I would agree with what's already been said in that I think that it's necessary to do this IV without the B vitamins in order to judge its efficacy. Like everything else, these seemed to work best in a subset of his patients. A couple of useful quotes from Betrayal by the Brain, pages 132 and 133:

Responders to IV ascorbic acid generally feel considerably better in most respects the day after treatment.

Adverse effects are uncommon. They consist of some dysphoria and last for a day or so.

So this would hopefully give you some guidance as to whether these are useful to you.

I'm also wondering whether I should cancel the third one for next week or try it again minus the b complex. Either way I'lol be pretty useless for the next little while.

I would recommend trying it again, as it's possible that the ascorbate alone is actually very helpful for you. When I got my daily IV ganciclovir infusions back in 2001, ascorbate was part of the mix, and I think that that's one of the reasons that I responded so quickly, beginning a major recovery after two weeks of treatment.

 

[Thomas]

@zzz thanks. I'll try him again this wknd. Sorry I've been in a major crash since the other day -- the type where I needed the parent's to come over and feed me type crash. Hopefully I'll be out of it soon enough and will be able to speak and be cognitively sharp enough to chat with him.

Thanks again.

 

[geraldt52]

... I've done 2 IV ascorbate sessions as per the Goldstein protocol and it has either done nothing or made me feel worse (is that even possible?)...I felt good the during the day/night after the infusion but since the next day and today I feel very flu like and toxic since receiving the second one two days ago. Thoughts?.

That is very similar to my experience with IV vit C. The lethargy/fatigue always improved the third and fourth days after the infusion. My "improvements" from IV vit C therapy have been very subtle, and measured in weeks and months, not days. I wouldn't give up on whatever course you've laid out for yourself...at least not based on not feeling well a few days after the infusuion.

 

[minkeygirl]

Goldstein surrendered his medical license in 2003.

 

[Thomas]

That is very similar to my experience with IV vit C. The lethargy/fatigue always improved the third and fourth days after the infusion. My "improvements" from IV vit C therapy have been very subtle, and measured in weeks and months, not days. I wouldn't give up on whatever course you've laid out for yourself...at least not based on not feeling well a few days after the infusuion.

Thanks for your insight. Did you have the calcium gluconate and/or magnesium which is typically added to IV ascorbate as well?

 

[heapsreal]

Dr mariano who i think is a neurologist and an endocrinologist is said to find goldsteins work interesting and tried to take it to another level. I dont think they have ever met but would be interesting for them to exchange some info and views on cfsme matters.

 

[Sidereal]

The problem with IV ascorbate is that it's a very potent antimicrobial and not everyone can tolerate that. As I mentioned, even liposomal C was too much for me. It works too well, what can I say. Mixing it up with B vitamins is just plain scary and suggests that the doctor who prescribed the cocktail doesn't know anything about ME. Some people here react to toothpick doses of B vitamins. In general, I believe IV anything is too risky if you have severe ME. Too much mobilisation of toxins and infections all at once.

 

[Dufresne]

@Sidereal
I think you're mostly right about this. The majority of docs with an inkling of ME/CFS have a perspective compatible with that of Dr Teitlebaum, which relates to chronic fatigue more than ME/CFS. As a result you get Myers cocktails, thyroid and adrenal hormones, etc. Certainly there's an overlap and some of us can tolerate these interventions, but those with very sensitive systems need to be careful. One should be very leery when a doctor or naturopath wants to shoot them full of nutrients. The vast majority of time they're just grasping at straws and/or lining their pockets at your expense. I think vitamin C in larger doses is worth trying but there's no need to mainline 20g right out of the gate; start with the crystal.

 

[Sidereal]

@Sidereal
I think you're mostly right about this. The majority of docs with an inkling of ME/CFS have a perspective compatible with that of Dr Teitlebaum, which relates to chronic fatigue more than ME/CFS. As a result you get Myers cocktails, thyroid and adrenal hormones, etc. Certainly there's an overlap and some of us can tolerate these interventions, but those with very sensitive systems need to be careful. One should be very leery when a doctor or naturopath wants to shoot them full of nutrients. The vast majority of time they're just grasping at straws and/or lining their pockets at your expense. I think vitamin C in larger doses is worth trying but there's no need to mainline 20g right out of the gate; start with the crystal.

My thoughts exactly @Dufresne. A lot of people with fatiguing conditions can get away with these sorts of radical interventions because chances are their body is still somewhat resilient and they won't end up bedridden & fed by parents. In ME/CFS there is an almost complete loss of ability to adapt to any stressor. In our patient population the risks of every medical intervention including vitamins are unusually extreme. Just a couple of days ago two people here on PR told me they developed bedridden ME instantly after IV glutathione. I've heard similar stories about pretty much every supplement that Cheney's echo machine warns against. It just goes to show you the dangers of going to a doctor who doesn't understand true ME/CFS but tries to apply the same principles he/she can get away with in mild fatigue states. Start low, go slow.

Wishing you a speedy recovery @Thomas.

 

[Thomas]

My thoughts exactly @Dufresne. A lot of people with fatiguing conditions can get away with these sorts of radical interventions because chances are their body is still somewhat resilient and they won't end up bedridden & fed by parents. In ME/CFS there is an almost complete loss of ability to adapt to any stressor. In our patient population the risks of every medical intervention including vitamins are unusually extreme. Just a couple of days ago two people here on PR told me they developed bedridden ME instantly after IV glutathione. I've heard similar stories about pretty much every supplement that Cheney's echo machine warns against. It just goes to show you the dangers of going to a doctor who doesn't understand true ME/CFS but tries to apply the same principles he/she can get away with in mild fatigue states. Start low, go slow.

Wishing you a speedy recovery @Thomas.

Thanks you. And that's an interesting observation and one I'll take seriously.

The problem with IV ascorbate is that it's a very potent antimicrobial and not everyone can tolerate that. As I mentioned, even liposomal C was too much for me. It works too well, what can I say. Mixing it up with B vitamins is just plain scary and suggests that the doctor who prescribed the cocktail doesn't know anything about ME. Some people here react to toothpick doses of B vitamins. In general, I believe IV anything is too risky if you have severe ME. Too much mobilisation of toxins and infections all at once.

If IV anything may be too risky do you believe I should postpone or be concerned about my hopefully upcoming IV ketamine/lidocaine? I was actually really looking forward to that one!

 

[Sidereal]

If IV anything may be too risky do you believe I should postpone or be concerned about my hopefully upcoming IV ketamine/lidocaine? I was actually really looking forward to that one!

That's a very different situation. Those drugs are dangerous or ineffective for ME when administered any other route. I was referring to IV pushes of various nutrients and detox agents in my rants.

 

[geraldt52]

Thanks for your insight. Did you have the calcium gluconate and/or magnesium which is typically added to IV ascorbate as well?

I have done a series of IV vit C just twice. The first time included the calcium and magnesium, as well as something else which I can't remember. The most recent time was nothing but Vit C. I don't recall feeling quite as bad a few days after the infusion during first series...but that may be because I am much more ill, and much older, now then I was then.

 

[Thomas]

Just an update/FYI I have continued trying to contact him but as of yet I'm still unsuccessful.

Also, I've been politely contacted by other members but I should be clear that I do not have a direct relationship with the Doctor or his family so there's only so much o can do at this point...

 

[nandixon]

@zzz, Have you ever tried cimetidine (Tagamet) yourself? I saw where you're having some success using low dose valganciclovir (Valcyte) and I'm curious how cimetidine and Valcyte might compare as immunomodulators.

If anyone else has tried both of these drugs I'd appreciate if you could say what similarities and differences you found between the two. Thanks!

I've been having some success myself for a few weeks now with cimetidine (1/4 tablet = 50mg, every 12 hours), with improved baseline energy levels and faster recovery from PEM for my ME/CFS, which had been progressively worsening over 17+ years.

I'm completely negative for EBV by multiple different testing methods, so the cimetidine is not having a specific antiviral effect with respect to EBV in my case.

Additionally, both ranitidine (Zantac) and famotidine (Pepcid) make me feel worse, so I doubt the cimetidine is having a general H2 antihistamine effect.

The most well-cited immunomodulatory effect of cimetidine seems to be its ability to decrease the activity of Tregs (i.e., regulatory T cells, formerly known as suppressor T cells), so perhaps that's playing a role, but there are certainly other possibilities.

Both Valcyte and cimetidine would tend to shift a person's cytokine profile towards Th1, I think. I'm not sure what other effects they might share in common, if any.

 

[Hip]

@nandixon
Very interesting. I also tried famotidine (see this post), but felt a lot worse on it (instantly became very mentally vague).

I think I will add cimetidine (Tagamet) to my list of promising drugs to try.

I did not know cimetidine decreases T-reg activity. In this study it says that:

Experimentally, cimetidine, an H2-receptor antagonist, has been shown to enhance a variety of immunologic functions both in vivo and in vitro because of its inhibitory effects on suppressor-cell function. Successful tumor immunotherapy, as well as some protection from infection, has been reported in experimental animals.

Patients receiving cimetidine have been shown to exhibit enhanced cell-mediated immunity as evaluated by increased response to skin-test antigens, restoration of sensitivity following development of acquired tolerance, and increased responses of lymphocytes to mitogen stimulation.

Because of its inhibitory effect on suppressor function, cimetidine treatment may be deleterious in patients with organ transplant and autoimmune disorders.

It says here that:

Cimetidine blocks histamine's ability to stimulate suppressor T lymphocyte [ie, T-reg cell] activity and to inhibit natural killer (NK) cell activity and interleukin-2 production.

IL-2 is of course a Th1 cytokine.

Possibly this NK cell boosting effect of cimetidine may also explain its benefits. Two studies found that in cancer patients where there was low NK activity, cimetidine boosted NK function: cimetidine augmented natural killer activity in ovarian cancer patients, 1 and in patients with B-cell chronic lymphocytic leukemia. 1 Cimetidine did not boost NK activity in health patients with normal NK function.

Though ranitidine also seems to boosts NK cell activity, in postoperative conditions, 1 and you found that you felt worse on ranitidine (though this feeling worse might be due to other actions that ranitidine has in the body).


If it is the NK activity boosting effect of cimetidine that is providing most of this drugs benefits in ME/CFS, then there are quite a few NK activity boosting supplements that might offer similar benefits: see this post. I have tried taking cocktails of the most potent NK boosting supplements, and do quite quickly (in a few days) feel a little bit better while taking them, but no spectacular improvements.



I note in this Wikipedia article that "the H2 receptor antagonists are a class of drugs used to block the action of histamine on parietal cells." It just so happens that in Dr Chia's stomach biopsy study on ME/CFS patients, he found the parietal cells of the stomach were chronically infected with enteroviruses. Whether that has any significance, I don't know. Perhaps the antagonism of the H2 receptor on these parietal cells is somehow modulating the enterovirus infection; but I don't know what the mechanism would be.

 

[Sidereal]

I also felt much worse on ranitidine but get good control of HSV and VZV symptoms with cimetidine. The problems with cimetidine are reduction of stomach acid (some of us are low to begin with) and blockade of the H2 receptor which, for me at least, results in more histamine binding to H1 which results in an awful flare of mast cell activation symptoms.

Also, cimetidine slows down the metabolism of some drugs so be careful if using other stuff at the same time. I developed toxic reactions to a drug I was already on when I first used cimetidine.