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

[Thomas]

These experiments are proving to be a fruitless endeavour thus far. I've tried many of the Goldstein meds that are on his decision tree. But without access to certain drugs and certain profiling drugs, I fear that finding the magic bullet(s) will be like a needle in a haystack.

Perhaps Dr. Goldstein is correct that many patients can try 100 drugs without any benefit and reach the endpoint of feeling dramatically better on drug 101. But those folks were lucky to have his guidance along the way.

Perhaps he is also correct that he had special "tricks of the trade" that only he knew and no one else was interested in learning. (See page xiii of the Foreword to Tuning The Brain). On the bright side though I guess we're at least lucky to have the books as a guide which is better than nothing I suppose.

 

[Insomniac]

If given the opportunity would you try IV amantadine and/or guaifenesin? I've tried both orally without much benefit or adverse reactions...

IV amantadine is availiable to anyone with "fibromyalgia" in my local hospital pain clinic in Israel. I don't know what dose I recieved but it did nothing for me.

Didn't know guaifenesein could be given in an IV.

Completely agree with what you said about trying his treatments is like finding a needle in a haystack. His treatments were symptom and mechanism suppression which is very important and still years ahead of current doctors, but not enough.

 

[Thomas]

IV amantadine is availiable to anyone with "fibromyalgia" in my local hospital pain clinic in Israel. I don't know what dose I recieved but it did nothing for me.

Didn't know guaifenesein could be given in an IV.

Thanks. Yes it appears at the time of TTB, Dr. Goldstein found ketamine, lidocaine, amantadine, and guiafenesin all in IV form to be his top 4 most effective meds. Apparently IV guaifenesin is quite rare and probably difficult to find a doc who will administer it.

 

[JES]

Has anyone here besides the thread started had a chance to trial the nitric oxide enhancing treatments yet (e.g. isosorbide dinitrate)? @Hip?

I'm planning to discuss some of these Goldstein treatments with my doctor who is rather open-minded about treatment options. Especially the nitric oxide influencing drugs sound very interesting. As we know they are something that Fluge/Mella are investigating as well (link), plus they are way cheaper and easier to obtain than rituximab.

 

[Hip]

Has anyone here besides the thread started had a chance to trial the nitric oxide enhancing treatments yet (e.g. isosorbide dinitrate)? @Hip?

I bought some nitroglycerin, and tried up to 0.3 mg taken sublingually, but I have not noticed any effect whatsoever, good nor bad.

 

[Sing]

@JES Please report back to us what you discover--

 

[sflorence]

@Hip and others I tried the nitroglycerin up to 20mg on about four occasions and haven't got any benefit from it. Does that mean I can rule it out or should I continue to try?

I get the impression Goldstein says that if they are going to work they will on the first attempt.?

Where are people getting the nitroglycerin?

 

[Thomas]

Where are people getting the nitroglycerin?

I got mine from www.brandmedicines.com

 

[Hip]

Where are people getting the nitroglycerin?

Try searching the pharmacies listed in this post. You are best of searching for glyceryl trinitrate (= nitroglycerin).

 

[sflorence]

I have something to add to the discussion as well. Sorry for the awkward sentences, I am a bit out of it today.

Before I had diagnosed myself with CFS I had thought it was just depression.

My doc prescribed my Lamotrigine one day, and the following day of taking it my life changed. Complete remission within 2 days. The cherry on top was that it also CURED my anxiety. I was the social butterfly that I remembered being as a kid.

I think my dosage was around 100-200mg, which is pretty damn high, and eventually I got the "rash" so I had to quit taking it. If you are curious about the rash, a quick google search clears it all up. It's not harmful if you catch it right away and stop taking the drug.

Fast forward 2 years. I decided to give it another go. Again, I had the same results but at a dosage of about 75-100mg. But now I ran into a different problem and I had to stop taking it.
At the time I was in a engineering program and for some reason lamotrigine made me as dumb as rocks. I could not do basic algebra, whereas before I was doing advanced calculus problems.

I am thinking about giving it another try, because after doing some research it turns out lamotrigine depletes all of the bodies folate. Since I was already low in folate this could obviously cause a neurological problem.

 

[Hip]

it turns out lamotrigine depletes all of the bodies folate.

I cannot find anything online saying that lamotrigine depletes folate, apart from this article which says that some antiepileptic drugs can deplete folate.

I did read that lamotrigine is a weak inhibitor of dihydrofolate reductase, so this can mildly inhibit the action of folate.

 

[sflorence]

I cannot find anything online saying that lamotrigine depletes folate, apart from this article which says that some antiepileptic drugs can deplete folate.

I did read that lamotrigine is a weak inhibitor of dihydrofolate reductase, so this can mildly inhibit the action of folate.

I read it a few months ago, sorry I can't find the source at the moment.

I thought this was interesting. Maybe it is not a good idea to take it with folate..
http://psycheducation.org/treatment.../lamotrigine-lamictal/lamotrigine-and-folate/

"The study authors speculate that folate and lamotrigine might both be trying to bind to the same spot on neurons (there is some old evidence to suggest this might be so). Or that maybe folate interferes with the absorption of lamotrigine"

 

[barbc56]

I have something to add to the discussion as well. Sorry for the awkward sentences, I am a bit out of it today.

Before I had diagnosed myself with CFS I had thought it was just depression.

My doc prescribed my Lamotrigine one day, and the following day of taking it my life changed. Complete remission within 2 days. The cherry on top was that it also CURED my anxiety. I was the social butterfly that I remembered being as a kid.

I think my dosage was around 100-200mg, which is pretty damn high, and eventually I got the "rash" so I had to quit taking it. If you are curious about the rash, a quick google search clears it all up. It's not harmful if you catch it right away and stop taking the drug.

Fast forward 2 years. I decided to give it another go. Again, I had the same results but at a dosage of about 75-100mg. But now I ran into a different problem and I had to stop taking it.
At the time I was in a engineering program and for some reason lamotrigine made me as dumb as rocks. I could not do basic algebra, whereas before I was doing advanced calculus problems.

I am thinking about giving it another try, because after doing some research it turns out lamotrigine depletes all of the bodies folate. Since I was already low in folate this could obviously cause a neurological problem.

I take lamictal and was started with the lamictal pack where you start on a low dose which increases, I think weekly, to get your body used to the medication. This supposedly decreases the chances of getting the rash which can indicate a serious consequence of taking it as this usually happens when you first start it.. Did you start with this? It's standard practice and any competent psych. should know this.

Fortunately, it is a rare side effect but imparative to keep in mind. It's important to have a psychiatrist prescrbe these medications vs. a PCP.

I have found it very helpful for reducing anxiety but was originally given it to potentiate my antidepressant as I can't take many of them but certainly needed an AD, even before my illness.

But talk to your doctor about this. It's frustrating that people react differenly to ADs, even if not ill with me/cfs. Sometimes it's a matter of trial and error till you find the right combination. The good thing is that it does give the psychiatrist clues. This is why it's crucial to be monitored as a severly depressed person is at risk for suicide between the time of starting the AD as the patient may have more energy to carry out any suicidal ideation yet the medican has not kicked in enough for the depression. My doctors practice has a psychiatric nurse whose job is to call and monitor your progress. For some that means daily contact. Falling through the cracks can have serious consequences.

I haven't heard of lamictal depleting folate but that doesn't mean it doesn't as it may be something I haven't looked into.

Good luck!

 

[Hip]

Looks like the anticonvulsant drug gabapentin, which is often used in ME/CFS, and is in Goldstein's top 23 drugs, depletes folate:

Antiepileptic drugs interact with folate and vitamin B12 serum levels.

 

[knackers323]

I have something to add to the discussion as well. Sorry for the awkward sentences, I am a bit out of it today.

Before I had diagnosed myself with CFS I had thought it was just depression.

My doc prescribed my Lamotrigine one day, and the following day of taking it my life changed. Complete remission within 2 days. The cherry on top was that it also CURED my anxiety. I was the social butterfly that I remembered being as a kid.

I think my dosage was around 100-200mg, which is pretty damn high, and eventually I got the "rash" so I had to quit taking it. If you are curious about the rash, a quick google search clears it all up. It's not harmful if you catch it right away and stop taking the drug.

Fast forward 2 years. I decided to give it another go. Again, I had the same results but at a dosage of about 75-100mg. But now I ran into a different problem and I had to stop taking it.
At the time I was in a engineering program and for some reason lamotrigine made me as dumb as rocks. I could not do basic algebra, whereas before I was doing advanced calculus problems.

I am thinking about giving it another try, because after doing some research it turns out lamotrigine depletes all of the bodies folate. Since I was already low in folate this could obviously cause a neurological problem.

I also have had impressive results, multiple times with lamotrigine to the point I thought it may be the answer. as usual it didn't last. and I think it seems to be losing its effect with each try.

I have also had good effect from gabapentin and baclofen. maybe they don't do the whole job or continue to work because they are just messing with peripheral things and not the underlying cause.?

I am now getting big help with brain fog with high dose oregano oil within an hour. is this due to the brain vasodilation problems cfsers are reported to have?

this illness is far to complex and involved for sufferers to try and make heads or tails out of by ourselves. when is a decent effort going to be made by the authorities to try and come up with some answers instead of wasting millions on how to solve obesity( which for many is as simple stop eating rubbish and being lazy) and other pointless studys.

really fed up with no answers, no help and no life

 

[sflorence]

@zzz

Have dug deep into eNOS dysfunction and uncovered two candidates to treat it.

You have Hydralazine which when combined with a standard NO donor has proven to greatly increase efficacy.
Perhaps bypass the nitrate tolerance which has roadblocked you.

You then have the option of PETN, which is a lot more promising for this purpose and is devoid of nitrate tolerance with potential to be effective even in the presence of reduced NO bioavailability (which I propose is the case with yourself, as well as many of us here).

I've ordered the ISDN/Hydralazine combo and will let you all know its effects. However, the PETN I have not been able to get hold of yet, for obvious reasons. It is readily available in Eastern Europe, which I am conveniently visiting in a couple months time, so I'll update progress on that front also should any occur.

EDIT: http://www.hindawi.com/journals/jdr/2010/213176/

Any update on your situation, Jon? Have you tried either of the drugs?

 

[Jon_Tradicionali]

Any update on your situation, Jon? Have you tried either of the drugs?

I'm not budging from square 1 unfortunately.

Did try ISDN/Hydralazine with no luck, then again, I've not had luck with anything.
Someone else may find it useful.

 

[sflorence]

@Jon_Tradicionali thanks for reporting back, really appreciate it.

Here is a note to the general forum on Gabapentin for people with MCS, CFS, FM. http://www.ncf-net.org/forum/neurontin98.htm

Dr. Jay W. Seastrunk (the article above is written about him) follows Dr.Goldsteins theories. I found a man whom was treated by Dr. Jay W. Seastrunk that claims 5,200mg of Gabapentin and some Effexor cured him of MCS. I cannot exactly tell by his wording, but possibly he was cured of CFS and FM as well, I have not found a way to contact him to ask.

Here is this mans comment on amazon: http://www.amazon.com/gp/review/R2YMLLI6HYD2JG?ref_=glimp_1rv_cl

Here is another one by the same man, which I cannot link for some reason. This one is on "Betrayal by the brain" on amazon as well:

"I have had MCS (multiple chemical sensitivities) since 1978. MCS overlaps with CFS and FM. I have tried just about everything anyone has suggested over the last 30 years. Absolutely NOTHING helped at all. Not even a little bit.

Then I discovered Goldstein's work and found a doctor that followed his methods (Dr. Seastrunk). He put me on high doses of Neurontin along with Effexor. For the first time in my life IT WORKED. I couldn't believe it. The downside is the side effects of those drugs. But they pulled me out of a downward spiral, and I'm stable again."

 

[soofke]

magnesium & (the right kind of) vitamin D did the trick for me

 

[sflorence]

magnesium & (the right kind of) vitamin D did the trick for me

Which kind of D was that?