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

[Thomas]

Have you been able to get this drug? I can't find it anywhere without a prescription.

I couldn't find it anywhere online either so I asked my family doctor and he agreed to a trial of 14 1mg pills. He was hesitant but I sold him on it due to its use in anxiety which is a big problem for me. It's also used for ADHD and smoking cessation so perhaps you can lie and say you're trying to quit smoking or something.

He advised me to take it at bedtime but I'm wondering if Goldstein would advise taking it in the daytime to assess its effectiveness?

 

[Sidereal]

I couldn't find it anywhere online either so I asked my family doctor and he agreed to a trial of 14 1mg pills. He was hesitant but I sold him on it due to its use in anxiety which is a big problem for me. It's also used for ADHD and smoking cessation so perhaps you can lie and say you're trying to quit smoking or something.

He advised me to take it at bedtime but I'm wondering if Goldstein would advise taking it in the daytime to assess its effectiveness?

Goldstein recommended taking clonidine at bedtime which is a similarly acting drug. I take everything during the day at first because of wacky ME medication reactions; you wanna be alert and awake to watch for any bad reactions but if it works without side effects it's probably better to switch to bedtime dosing?

 

[Thomas]

Goldstein recommended taking clonidine at bedtime which is a similarly acting drug. I take everything during the day at first because of wacky ME medication reactions; you wanna be alert and awake to watch for any bad reactions but if it works without side effects it's probably better to switch to bedtime dosing?

Good advice. I decided to go with Guanfacine over Clonidine because I think in Tuning the Brain, Goldstein wrote that he found Guanfacine to be superior to Clonodine over time.

 

[Sidereal]

Good advice. I decided to go with Guanfacine over Clonidine because I think in Tuning the Brain, Goldstein wrote that he found Guanfacine to be superior to Clonodine over time.

Absolutely. Clonidine is easy to get but not as good in terms of receptor profiling as guanfacine which is why I've been chasing the latter in vein. I have some clonidine right here in fact but haven't tried it yet.

This is a pretty important study (IMO) showing how the more selective drug guanfacine improves working memory whereas clonidine is detrimental:

http://www.nature.com/npp/journal/v20/n5/full/1395310a.html

A recent study of pediatric CFS in Norway also showed that suppressing the SNS tone with clonidine decreased their functionality compared to placebo. I wonder how guanfacine would have fared.

 

[Thomas]

Absolutely. Clonidine is easy to get but not as good in terms of receptor profiling as guanfacine which is why I've been chasing the latter in vein. I have some clonidine right here in fact but haven't tried it yet.

This is a pretty important study (IMO) showing how the more selective drug guanfacine improves working memory whereas clonidine is detrimental:

http://www.nature.com/npp/journal/v20/n5/full/1395310a.html

A recent study of pediatric CFS in Norway also showed that suppressing the SNS tone with clonidine decreased their functionality compared to placebo. I wonder how guanfacine would have fared.

Interesting study, thanks for sharing. I'm guessing to calculate the dose of Guanfacine in the study one would multiply their weight in kilograms by .029 but I could be wrong.

As for the Norway reference I'll take that as an important warning. My blood pressure is usually in the low-normal category and I'm often tachycardic with OI and POTS'y, but overall I just want to see how this drug may affect my SNS which always feels like it's short circuiting.

This illness seems like a never ending trial and error exercise. We're so lucky! (not).

 

[nandixon]

@Sidereal

I've got a bad feeling about the guanfacine, because clonidine was very bad for me (too hypotensive), and in that article it states:

Blood pressure and the subjective feeling of sedation were affected equally by clonidine and guanfacine.

 

[Sidereal]

@Sidereal

I've got a bad feeling about the guanfacine, because clonidine was very bad for me (too hypotensive), and in that article it states:

Yes, it's normally used for hypertension. It would only be something to take at bedtime, at best, but the problem as with everything else in ME/CFS is that so many of us have OI and hypotension issues combined with apparent SNS excess and tachycardia which makes the whole thing damn near impossible to treat.

 

[Thomas]

Yes, it's normally used for hypertension. It would only be something to take at bedtime, at best, but the problem as with everything else in ME/CFS is that so many of us have OI and hypotension issues combined with apparent SNS excess and tachycardia which makes the whole thing damn near impossible to treat.

I know, it's so annoying. What do you and @nandixon consider "too hypotensive"?

 

[Sidereal]

I know, it's so annoying. What do you and @nandixon consider "too hypotensive"?

Below 95/65 seems to be where symptoms become untenable for me.

 

[Gingergrrl]

Below 95/65 seems to be where symptoms become untenable for me.

95/65 is actually a VERY good BP reading for me! I still feel bad but what I meant is that I rarely can get my BP that high on my own.

 

[nandixon]

Yes, it's normally used for hypertension. It would only be something to take at bedtime, at best, but the problem as with everything else in ME/CFS is that so many of us have OI and hypotension issues combined with apparent SNS excess and tachycardia which makes the whole thing damn near impossible to treat.

Yes, the clonidine was actually suggested to me a couple years ago by my sleep doctor as a possible sleep aid. I can't remember what dose I tried, but it probably would have been a 1/4 of whatever the smallest tablet size is. It wasn't helpful for sleep and made me feel worse (more fatigue/exhaustion) the next day.

 

[john66]

I don't think he ever mentioned mementine, but sounds like a drug that was in trials during the writing of his last book.

 

[JPV]

However, as you may have gathered, I had a major relapse eight years later, a day after some minor surgery. And tolerance to nitroglycerin or isosorbide dinitrate can develop quickly; it never worked the same for me.

Here's what David Whitlock has to say about nitroglycerin resistance...

An Engineering Perspective on CFS – by Dave Whitlock

“NO donors” have been suggested, but NO/NOx chemistry is more complicated than most researchers appreciate. Nitroglycerine has been called an NO donor, it is not. It does have some NO/NOx effects, but the precise mechanisms are not well understood. It likely has to do with generation of NO/NOx species in mitochondria, but at the expense of mitochondria aldehyde dehydrogenase (which is destroyed). This is thought to be the mechanism behind what is called “nitrate resistance” where people lose the ability to respond therapeutically to nitroglycerine. Nitroglycerine does cause migraines, and does cause oxidative stress. It may be exerting more of a long term “anti-NO” effect following a short term “NO effect” because of compensatory rebound. Some NO donors (such as sodium nitroprusside) do work as NO donors, but because NO has such a short lifetime (less than a minute), it must be administered continuously and intravenously and again, only in a hospital setting.

He's developed a probiotic spray that's supposed to help increase nitrate and nitric oxide. I believe that they are selling it as a beauty aid for now while they wait for FDA approval to allow them to make specific health claims...

Q: How does it work?

A: The Nitrosomonas in the AO+ Mist work by consuming the irritating compounds produced by your skin (like ammonia and urea in sweat), and in turn producing beneficial byproducts. Specifically, Nitrosomonas produce Nitrite and Nitric Oxide. Nitrite tames the bad bacteria and promotes the good bacteria on the skin. Nitric Oxide is a key antioxidant and anti-inflammatory. These two byproducts together do a great deal to help promote healthy skin overall.

 

[Wayne]

95/65 is actually a VERY good BP reading for me! I still feel bad but what I meant is that I rarely can get my BP that high on my own.

Hi @Gingergrrl,

95/65 used to be good for me as well. I think I remember you posting you're getting started on low-dose hydrocortisone at this time, so wanted to mention I quickly discovered after starting on my low-dose HC (Cortef) that my blood pressure stabilized, and has been much more consistent ever since--usually around 120/85 or so.

Made a huge difference in my functionality--went from about 5% functionality to around 20%, even though my bp still drops about 20 points from a laying down or sitting position to standing. It just used to be a lot worse.

 

[Gingergrrl]

Hi @Gingergrrl,

95/65 used to be good for me as well. I think I remember you posting you're getting started on low-dose hydrocortisone at this time, so wanted to mention I quickly discovered after starting on my low-dose HC (Cortef) that my blood pressure stabilized, and has been much more consistent ever since--usually around 120/85 or so.

Made a huge difference in my functionality--went from about 5% functionality to around 20%, even though my bp still drops about 20 points from a laying down or sitting position to standing. It just used to be a lot worse.

@Wayne right now my BP is 90/58 in spite of Midodrine, lots of water, salt stick tablets and compression stockings. Can no longer drink Vitalyte or Nuun due to severe MCAS histamine allergic reactions at present. So far the Cortef is great and I am hoping it will increase my BP and dampen down the reactions. Thanks for the encouragement.

 

[wastwater]

I've just got betrayal by the brain.
How does tuning the brain relate to this,is it worth getting.thanks

 

[Thomas]

@wastwater i have both. I find that I go back to Tuning The Brain more than BBTB mostly because it's a more recent publication.

@Sidereal what are some of the Goldstein meds that you've tried? Have you done any of the IV's? I've tried naphazoline, nimodipine, Ritalin, nitroglycerin, sumatriptan, piracetam and a few others. Waiting on a shipment of amantadine, beta blockers, tamiflu, doxy, reboxetine, and hydergine. And I was able to get approved for IV ketamine/lidocaine at a local pain clinic at the end of July.

 

[Sidereal]

@wastwater i have both. I find that I go back to Tuning The Brain more than BBTB mostly because it's a more recent publication.

@Sidereal what are some of the Goldstein meds that you've tried? Have you done any of the IV's? I've tried naphazoline, nimodipine, Ritalin, nitroglycerin, sumatriptan, piracetam and a few others. Waiting on a shipment of amantadine, beta blockers, tamiflu, doxy, reboxetine, and hydergine. And I was able to get approved for IV ketamine/lidocaine at a local pain clinic at the end of July.

Have not tried IVs. Tried nimodipine, guaifenecin, probenecid, piracetam, ranitidine, cimetidine.

 

[Thomas]

Have not tried IVs. Tried nimodipine, guaifenecin, probenecid, piracetam, ranitidine, cimetidine.

How long do you take a medication before deciding whether it's doing anything or not? Sometimes I fear I give up on a med too quickly like after a dose or two. Sorry for the questions

 

[Sidereal]

How long do you take a medication before deciding whether it's doing anything or not? Sometimes I fear I give up on a med too quickly like after a dose or two. Sorry for the questions

A few days.