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

[Thomas]

Well I think I finally found a local doctor and clinic that has agreed to give me an IV of preservative free lidocaine in 500ml of normal saline that will be infused slowly over 2 hours. His starting dosage is around 3-4 mg/kg. In TTB Goldstein references dosages anywhere from 1.5 mg/kg - 5 mg/kg.

He also uses Ketamine and other IV meds and is open to suggestions. Best of all he was not offended (like other doctors get) when I mentioned the Goldstein protocol to him. But he agreed we should start with lidocaine before going to or mixing in ketamine.

My appointment is Monday so unless there are any unforeseen changes I will most likely be getting this treatment as a start.

If anyone has any objections or comments, please let me know Thank you.

 

[MeSci]

Well I think I finally found a local doctor and clinic that has agreed to give me an IV of preservative free lidocaine in 500ml of normal saline that will be infused slowly over 2 hours. His starting dosage is around 3-4 mg/kg. In TTB Goldstein references dosages anywhere from 1.5 mg/kg - 5 mg/kg.

He also uses Ketamine and other IV meds and is open to suggestions. Best of all he was not offended (like other doctors get) when I mentioned the Goldstein protocol to him. But he agreed we should start with lidocaine before going to or mixing in ketamine.

My appointment is Monday so unless there are any unforeseen changes I will most likely be getting this treatment as a start.

If anyone has any objections or comments, please let me know Thank you.

Hope it goes well. Good luck!

 

[Gingergrrl]

Good luck @Thomas and keep us posted.

 

[Sidereal]

Fingers crossed @Thomas.

 

[Hip]

One for you, @zzz: if you look at table 1 in this study, it has one box entitled "Laser therapy as a method of elimination of tolerance to nitrates and increase of their action". By laser therapy, they mean low-level light therapy, or LLLT (which is generally equally effective with LEDs instead of low power lasers). So LLLT might possibly help you to regain the remission-inducing effects of nitrate drugs.

 

[Thomas]

So I did 3.5 mg/kg of 2% lidocaine in 250ml of saline (more on this later) infused slowly over what turned out to be plus/minus 2 hours this afternoon. At one point I needed to stop the infusion not due to adverse reactions, but because I had to pee so badly it was crazy. But if I had to guess I would say the actual infusion time was slightly less than 2 hours. During the infusion I experienced no adverse reactions. In fact, I felt no better or no worse during the infusion itself.

The Lidocaine was supposed to be in 500ml of saline (the doctor even mentioned that was what he used), but at the end of the infusion we both realized he mixed it in a 250 ml bag -- that was an obvious oversight, and may have contributed to the shorter infusion time, I'm not sure.

As far as I know and have been told, the saline is just a delivery system. For instance, when calculating infusion rates, say for example 2.5mg per minute, the amount of saline used doesn't enter the equation, it is simply there to deliver the drug.
Perhaps Goldstein used 500ml because it would seem obvious that if you wanted a long infusion time, having more liquid in the IV bag would allow for an easier time of that. I don't really know, every doctor I've asked says it doesn't matter or affect the drug, and Goldstein never went into specifics about the amount of saline he used and why?

Having said all that, after the infusion I felt a little sedated and weird and then some fluctuations between feeling cold and feeling hot. I thought I would have been able to sit at a cafe with my mom at the lobby of the clinic and have a bite, but I felt the need to be driven home -- A little confusion I guess too but that could have been from exertion of the day and the feeling of sedation. But these were mild and transitory.
It's unfortunate this wasn't an instant remission scenario for me but the onset of lidocaine according to Goldstein is anywhere from "immediate - 48 hours", so we'll see how things go over the next couple of days.

I also need to decide if in 2 weeks I want to do another lidocaine infusion or move on to ketamine (I really want to try this but also am a little gun shy at the same time), which of course will require much more precision in terms of infusion time and dosage. IV Lidocaine seems to be the one IV treatment that Goldstein uses the he mentions may take up to 3 or 4 infusions before it begins to kick-in. He writes IV Ketamine, TRH, Amantadine etc if they work, will work right away. Decisions decisions...

As always, I welcome your feedback or suggestions

 

[Gingergrrl]

As far as I know and have been told, the saline is just a delivery system. For instance, when calculating infusion rates, say for example 2.5mg per minute, the amount of saline used doesn't enter the equation, it is simply there to deliver the drug.

@Thomas I am not sure if this is true and it seems like both the amount of saline and the infusion rate would matter (not just in regard to this Goldstein protocol but to anything infused.)

When I had what we think was flash pulmonary edema from one liter of saline (in Nov 2014) my now mast cell doc said the infusion rate was too fast for me and I should never have a liter of saline infused in less than six hours. I know my case does not pertain to you but I don't see how the amount & speed of infusion don't matter?

Having said all that, you were very brave to try it and am hoping that you are still within the window of time to feel some improvement. Keep us posted!

 

[Thomas]

I know my case does not pertain to you but I don't see how the amount & speed of infusion don't matter?

Thanks for your reply but just to clarify I didn't say the rate of infusion didn't matter. It matters very much. In fact I've walked out of 2 pain clinics already due to their refusal to administer a 2 hour infusion.

What I said was that from what I've read and from doctors that I have asked, they have said (whether accurate or not) that the amount of saline mixed in with the drug is not important in the sense of it affecting the potency or whatever of the drug, that is it simply a vehicle or delivery system to get the drug into your body. Again, that may or may not be accurate from what we are trying to do under the Goldstein protocol way of doing things, only that that is what I have been told.

I still would have preferred the 500ml of saline but I def would have had to stop the infusion more than once to urinate. As for saline infusions on their own I have had 1.5 litres infused pretty quickly without any adverse reaction (or benefit) in the past.

 

[Gingergrrl]

Thanks for your reply but just to clarify I didn't say the rate of infusion didn't matter. It matters very much.

Sorry and I think I misunderstood!

What I said was that from what I've read and from doctors that I have asked, they have said (whether accurate or not) that the amount of saline mixed in with the drug is not important in the sense of it affecting the potency or whatever of the drug, that is it simply a vehicle or delivery system to get the drug into your body.

That makes sense and I do not know the answer. I know when I had IV Benadryl in the hospital it was mixed with a certain ratio of saline so the total infusion would last an exact length of time but this may also not apply in any way to your case. I would think more saline might dilute the drug but I am the last person to grasp any of this and hoping someone else can chime in!

I know many nebulized drugs are also mixed with saline and I always assumed the ratio mattered but I could be wrong?!

As for saline infusions on their own I have had 1.5 litres infused pretty quickly without any adverse reaction (or benefit) in the past.

That's good and we are definitely different in that regard (and I am in the minority!)

Good luck with next infusion if you decide to do it. Are you feeling better after resting a bit at home?

 

[MeSci]

Thanks for your reply but just to clarify I didn't say the rate of infusion didn't matter. It matters very much. In fact I've walked out of 2 pain clinics already due to their refusal to administer a 2 hour infusion.

What I said was that from what I've read and from doctors that I have asked, they have said (whether accurate or not) that the amount of saline mixed in with the drug is not important in the sense of it affecting the potency or whatever of the drug, that is it simply a vehicle or delivery system to get the drug into your body. Again, that may or may not be accurate from what we are trying to do under the Goldstein protocol way of doing things, only that that is what I have been told.

I still would have preferred the 500ml of saline but I def would have had to stop the infusion more than once to urinate. As for saline infusions on their own I have had 1.5 litres infused pretty quickly without any adverse reaction (or benefit) in the past.

Can't you have a container to pee into while you have the infusion?

Re saline, what kind of saline is this: isotonic? The reason I ask is that I think that ME patients are often prone to losing a lot of salt and water in urine, so can be deficient. I think that this is why pure saline infusions (maybe hypertonic?) can make us feel substantially better on their own, and revive us when we are very unwell.

I've read a few articles recently in the NEJM and/or Physician's First Watch about the latest opinion on saline, and that it's moving away from hypotonic infusions (I can't imagine why this would be thought to be a good idea for anyone unless they had hypernatraemia!).

Hope you start to feel some benefit from this infusion soon!

 

[Thomas]

Re saline, what kind of saline is this: isotonic? The reason I ask is that I think that ME patients are often prone to losing a lot of salt and water in urine, so can be deficient. I think that this is why pure saline infusions (maybe hypertonic?) can make us feel substantially better on their own, and revive us when we are very unwell.

I'm not sure what the difference is but I'm pretty sure the saline that was used was the normal 0.9% Sodium Chloride.

Hope you start to feel some benefit from this infusion soon!

Thank you. So far nothing really.

 

[zzz]

One for you, @zzz: if you look at table 1 in this study, it has one box entitled "Laser therapy as a method of elimination of tolerance to nitrates and increase of their action". By laser therapy, they mean low-level light therapy, or LLLT (which is generally equally effective with LEDs instead of low power lasers). So LLLT might possibly help you to regain the remission-inducing effects of nitrate drugs.

Thanks, @Hip. Unfortunately, I don't think that any such therapy is available anywhere near me.

@Thomas, I'm sorry the lidocaine didn't work for you. It's my understanding from Dr. Goldstein's works that for people for whom this treatment is effective, it should start working shortly after the first treatment. Later treatments may result in longer lasting effects, but I don't recall Dr. Goldstein's mentioning any cases where there was absolutely no positive response to the first treatment but positive responses to successive treatments. Do you recall where he said that it might take up to 48 hours for the effects of the treatment to be felt? Also,

Lidocaine seems to be the one IV treatment that Goldstein uses the he mentions may take up to 3 or 4 infusions before it begins to kick-in.

Do you recall where Dr. Goldstein said this?

Although lidocaine was one of Dr. Goldstein's two most powerful treatments, almost equaling ketamine in effectiveness, still, it was effective in only about half his patients. Of these, its most dramatic effect was in pain reduction, and Goldstein had major use for it in his fibromyalgia patients. In Betrayal by the Brain, he says on p. 47 that it "often" helped with global symptoms (this would include CFS as well as fibromyalgia), but this "often" was a subset of those it helped at all, so it was well below 50% of the patients he treated with it. I noticed that the people he described as benefiting from it most seemed to be people who benefited from dopamine agonists.

As far as I know and have been told, the saline is just a delivery system.

So much about the body and about Dr. Goldstein's treatments in particular is not well understood that I don't think a statement like this can be made with certainty unless controlled trials with different amounts of saline have been tried. It certainly is very possible that the difference of a quarter liter of saline made no difference in the outcome of your treatment at all; certainly, the lack of adverse reactions during the infusion is a good sign. However, considering that most of us have low blood volume, and that for this reason, saline itself usually has positive effects, it is possible that it acts synergistically with the lidocaine. It's impossible to say for sure without further experiments.

It sounds to me that if you got no benefits from the lidocaine, the ketamine might make the most sense for your next treatment. Dr. Goldstein's main caution here is that ketamine can make some people feel jittery. For this, he recommends clonidine as a preventive, or else a benzodiazepine to relieve any symptoms that may develop. I didn't see any doses specified, so I assume that standard doses are used.

You could also try lidocaine and ketamine mixed together in the same 500 ml bag of normal saline, which is how Dr. Goldstein mixed them. It's possible that there might be some synergistic activity that way.

In any case, I'm really glad that you finally found a reliable source for these treatments, and I wish you all the best in your next step.

 

[Thomas]

Do you recall where he said that it might take up to 48 hours for the effects of the treatment to be felt?

I got this from his archived website on the page where it goes through a typical neurosomatic protocol (these lists often changed but the one on the website indicates an onset of action anywhere from immediate-48 hours. It is #33 on the list from this link:
https://web.archive.org/web/20030711184705/www.drjgoldstein.com/frames/03about.html

With respect to your question on where I received the information that Lidocaine (unlike ketamine and his other drug IV's) may require 3 or 4 infusions before it worked, I received this from a previous Goldstein patient who provided me with a letter that Goldstein would often give his patients to give to their treating physicians - presumably that they came to visit Dr. Goldstein from abroad. From that letter it says, "Usually these medications (IV lidocaine, IV ketamine, and IV TRH) work immediately, with amelioration of almost all symptoms. Sometimes, lidocaine has to be given 3 or 4 times before it becomes effective."

However @zzz I agree with you that it is worth multiple lidocaine infusions only if no benefit or slight benefit has been achieved from the first infusion. I am nearly 3 days post first infusion and my brain fog has increased so I'm reluctant to give it another go. I may move on to ketamine, but perhaps before IV ketamine I may request a compounded cream or nasal spray as a starting point. I have also been offered IV midazolam however I'm unsure of this one as well. I'm at a crossroads of what to do next, if anything. Right now I feel crushing fatigue and extra fog so I am going to tread carefully.

Thanks for your warm wishes

 

[MeSci]

I'm at a crossroads of what to do next, if anything. Right now I feel crushing fatigue and extra fog so I am going to tread carefully.

Thanks for your warm wishes

Sorry to hear you're feeling lousy, @Thomas. Do you think it could be due to the exertion associated with the trip to the clinic?

 

[Thomas]

Sorry to hear you're feeling lousy, @Thomas. Do you think it could be due to the exertion associated with the trip to the clinic?

Thank you. Could be. That's always the tough variable with this illness.
It's probably a case of both but the point of a successful treatment is to feel better and know it.

 

[Thomas]

Question regarding Ketamine: if given the choice, would you try a compounded gel as per Goldstein's dosage before going right to IV just to see how you feel on it?

I know he says the IV route is more effective but perhaps a trial of a gel before IV makes more sense. I'm not even sure the clinic prescribes ketamine gel or if they just do the IV but in the event they do agree to a gel perhaps it's the smarter move for my own safety before diving into IV's, especially since they agree to Goldstein's IV protocol but you can't control every variable perfectly.

What would you do?

 

[Insomniac]

I'm brainfogged today so hope this makes sense.

Of Course I would try the gel first for safety, even if just for my own psychological feeling of safety.
It's just that if the gel does not work, don't give up, try the Ketamine infusion anyway.

If they don't do the gel, I don't think you have anything to worry about. Ketamine is a great drug for CFS and the clinic is bound to have a responsible doctor and nurse around while you do the infusion.

 

[Thomas]

Of Course I would try the gel first for safety, even if just for my own psychological feeling of safety.
It's just that if the gel does not work, don't give up, try the Ketamine infusion anyway.

If they don't do the gel, I don't think you have anything to worry about. Ketamine is a great drug for CFS and the clinic is bound to have a responsible doctor and nurse around while you do the infusion.

Thanks for this. It appears the doctor has agreed to Rx me a compounded ketamine cream. Not sure of the dose yet but it will be somewhere between 60 mg/Gm - 100 mg/Gm. I wanted eye drops so I could easily take them out with me if I needed to but he wasn't ready to experiment with that yet.

After that, assuming I don't have an adverse reaction or trip-out and need to go to the emergency room, he agreed to a Kemaine IV as well. He insisted he add midazolam to the IV as well. I didn't object.

When you did Ketamine with Dr. Goldstein via nasal spray did it reduce all symptoms (even cognitive?) or just pain?

 

[Insomniac]

Just pain in my case.
A few there had it help with energy too. It's great that you can try it both ways.

 

[Thomas]

Update for anyone who may be interested: I received a script for 5% Ketamine cream (which is 50 mg/Gm -- Goldstein used 80-240 mg/Gm) but whatever I figured I'd start low. So far I haven't noticed anything drastic, perhaps light sedation and decreased sensitivity to noise as well as spending less time in my head, but hard to tell. I did wake up this morning feeling a little refreshed (refresh being used here very lightly) and then I took a morning dose of the cream but it wasn't enough to prevent the eventual brain fog I get from eating food...like any food usually.

I don't think anything adverse has happened though (this is a low dose and a less efficient route of administration) either as I am still at my crappy baseline without feeling like I "crashed" as I did after the IV lidocaine.

Am I one of the rare patients that Goldstein says doesn't respond well to NMDA antagonists and should therefore try a much different class of drugs? Not sure. I also take around .5 mg of klonopin per day and benzos are known to block ketamine, but I feel that's a low dose and I'm willing to bet many responders to ketamine take benzos also.

I may add in some modafinil tomorrow to see if the nice sedating effects can remain but with increased mental clarity. Goldstein writes that modafinil can both antagonize *and* synergize with ketamine depending on the person. Go figure.

I have an IV ketamine infusion scheduled for next Monday which I think I will most likely go ahead with. The docotor who is infusing the drug just returned from a pain conference in Miami where they highlighted the importance of slow infusion rates for Ketamine as to not overwhelm the patient.
I was like, "I told you"!

I was hoping for an instant remission but alas it did not happen this time around. I have a feeling my brain is going to require some work before it gets out of a negative loop that's been jammed into place even two generations before I was born. So back to the drawing board (or Goldstein's decision tree) I go.