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

[Stretched]

Great thread!

FWIW, earlier this year I had an impacted tooth removed and used Nitrous Oxide (had used it
way back in the 70’s, recreationally with a close personal friend, a Dentist - for short highs, laughs).
This time was completely different. It did it’s job of minimizing focus on hammering and chiseling
BUT it brought on a very clear period of remission - like getting back what I remember of my
pre-PWME self. It was not a high nor euphoria - just clarity, even to what was going on. I made a note to pursue the dynamics of the state of mind but it drifted away along with medication’s effects later that day.

I recall reading Goldstein’s book back in the 90’s, when I was willing to eat pine cones to make this DD go away
('still am).

I took it with me on a visit with my then MD, a kindly old soul, endocrinologist willing to help. We went over the list
of 23 and he shook his head ‘no’ on each - especially the Oxytocin, thinking this guy was a quack! I remained open minded but could not access him (Dr. Jay). So, back to the then Cheney protocol.

However, if memory serves me correctly, I believe the old ‘CFS Chronicle’ (aka, later the ‘CFIDS Chronicle') did some articles with Dr. Goldstein early on. It seems the responses were also ones of incredulity and were dismissed (likely
for political reasons). [They would likely be searchable in the Archives section of the 'Chronicle's' morphed status, maybe research1st.org or cfids.org?]

So, hold that order of pine cones. I’m off to find some NO, or its precursors. Please continue the ideation for
what might be feasible (and legal), with the exception of an ongoing tooth extraction program=~&

 

[Hip]

@Stretched
Note that nitrous oxide (N2O, aka: laughing gas) and nitric oxide (NO) are different gases. However, on the subject of nitrous oxide providing temporary remission from symptoms, you might find the following comment interesting:

"I am a dentist and my wife has Behcet's disease. It is an autoimmune disease that affects mainly capillaries in multiple parts of the body. Because of my awareness and study of the disease I have had referrals from patients with autoimmune diseases that end up affecting the gums and teeth.

In treating them, they have a large amount of pain in many places and their teeth and gums are more sensitive than the average person, so I quite often use nitrous oxide while treating them. Many say that the nitrous oxide gives them more relief of pain than almost anything else. It has (only temporarily) improved eyesight, hearing, relieved pain of headaches, joint pain, carpal tunnel pain, other pinched nerve pain, peripheral neuropathy in feet and hands, and the list goes on in these patients."

Source: here.

 

[Stretched]

@Stretched
Note that nitrous oxide (N2O, aka: laughing gas) and nitric oxide (NO) are different gases. However, on the subject of nitrous oxide providing temporary remission from symptoms, you might find the following comment interesting:

@Hip I acknowledge the chemistry difference, s/b NO2. My error in notation.

I'm not sure what to think about the actual use of NO2 due to practicality and
legality. Do you know of other readily accessible analogs?

I will look up Bechet's - curious about its dynamics and correlates with ME given
the reference. I hope it's not one more turn of the screw!

 

[Hip]

@Stretched
Note: NO2 is a third gas called nitrogen dioxide, which is different again from nitrous oxide (N2O) and nitric oxide (NO).

Nitrous oxide (N2O) is legal to buy in the UK, and balloons filled with this laughing gas are sold for consumption at music festivals and similar events, as a rapid acting but short-lasting high. Nitrous oxide is generally available to buy in small gas canisters, as it is used to make whipped cream.

Nitrous oxide is an NMDA receptor antagonist, which may explain some of its benefits.

However, nitrous oxide depletes vitamin B12, so repeated use of this gas may lead to B12 deficiency. Repeated use can also lead to peripheral neuropathy.

 

[taniaaust1]

I'm fairly certain it wasn't the anesthetic. It was a very small lesion, and I believe they just used lidocaine, which is actually one of Dr. Goldstein's best treatments for ME/CFS. But the lesion was at the end of a nerve that went straight into the spine where the varicella zoster were presumably hiding out ever since my shingles episode.

I also had a mild shingles outbreak about five days after the surgery as my ME/CFS was getting worse, indicating a reactivation of the varicella zoster.

With my ME Lidocaine gave me such a bad neurological reaction (it flared up all my ME neurological symptoms and left me unable to walk for an our and with whole body jerks and seizure like activity) to the point an ambulance should of been called (but I stopped the dentist from doing so as I really didnt want to go to hospital due to what doctors you can strike).

Where it had been injected into me, also gave me immense pain in the injection site for several days as if someone was drilling into me there. I'd had 4 wisdom teeth out at the time, a couple dug out and the pain where the wisdom teeth had been, the huge gaping holes, were nothing at all compared to the pain from where the injection site had been

I later on found out that Lidocaine can be a drug very bad for ME people from that well known article on Anaestetics (sorry for the spelling) and ME and which drugs to avoid if you are a ME patient having one. With ME patients its said to avoid drugs which contain adrenaline and Lidocaine when I looked it up after I had severely bad reaction to it, is one of those drugs which usually has adrenaline so may need to be avoided (so that is what went wrong for me at dentist, I just didnt know at time) .

With Lidocaine thou, one can request to have it without the adrenaline in it, which I did next time I was at dentist.. I was fine with it when it didnt have the adrenaline in it.

Anyway.. if you had Lidocaine and it had the adrenaline with it.. it could certainly played a part at you getting sick again.
..........

interestingly a couple of the other drugs on his list Ive had before and had very bad reactions too as well.

 

[Hip]

@zzz
Given your ME/CFS remission by taking the nitric oxide-inducer isosorbide dinitrate, you might be interested in the potassium nitrate method of boosting NO mentioned in this post.

 

[wastwater]

I may get his book.

 

[Gingergrrl]

I may get his book.

I am in the middle of reading his first book now and ordered his second book on Amazon. You can get pretty cheap used copies (at least of the first book.) It is incredibly confusing for a non-science person like me but I am hoping to try some of his most effective treatments down the line and see if any are of benefit to me. Best wishes.

 

[Sidereal]

Fascinating thread, thank you all.

I've recently been dealing with varicella zoster reactivation in and around the eyes, a scary and unpleasant symptom. At first I was trying acyclovir and found I had to take 1000 mg twice daily to keep the herpes symptoms under control but at this dose I get nausea, dizziness, some additional fatigue etc.

Then I remembered Dr Goldstein's writings on cimetidine so I started experimenting with it on and off on for a couple of weeks to see if it does anything. I'm blown away by how effective this is at halting viral symptoms. The symptoms start to go away after 20-30 minutes of taking a 200 mg dose.

I should add that I have tried ranitidine (another H2 antagonist) in the past and it did nothing or possibly made me slightly worse overall.

Unfortunately cimetidine seems to interact with the metabolism of other drugs. I've been taking diphenhydramine (Benadryl) daily for over a year and when I started cimetidine the anticholinergic effects of benadryl were greatly increased to the point where I was totally spaced out and developed heart rhythm abnormalities. I stopped the benadryl for now but I need to be able to take a H1 antagonist for my mast cell activation problems yet none of the non-drowsy ones do anything for me so I'm kind of stuck.

No free lunch when it comes to this damned disease!

 

[Gingergrrl]

@Sidereal I was curious if you ever experienced the heart rhythm abnormalities with Benadryl alone b/c you are not the only person who has reported this. It seems Benadryl might not be as benign as once thought.

I was also wondering if the Zantac & Benadryl combo caused the heart issues or only the Tagamet & Benadryl combo?

Lastly, what happens if you use Zyrtec instead of Benadryl?

I hope you are able to find the right combo to bring you relief and you are right, there is no free lunch with this disease.

 

[Sidereal]

@Sidereal I was curious if you ever experienced the heart rhythm abnormalities with Benadryl alone b/c you are not the only person who has reported this. It seems Benadryl might not be as benign as once thought.

I was also wondering if the Zantac & Benadryl combo caused the heart issues or only the Tagamet & Benadryl combo?

Lastly, what happens if you use Zyrtec instead of Benadryl?

I hope you are able to find the right combo to bring you relief and you are right, there is no free lunch with this disease.

I get the odd skipped beat on Benadryl alone but nothing like the scary arrhythmias that were happening when I was doing Tagamet & Benadryl. You're right of course that these old timey antihistamines (and other old classes of drugs like tricyclic antidepressants which are commonly also used for sleep and pain) with strong anticholinergic effects have effects on the autonomic nervous system and heart rhythm. I think I was developing toxic levels of Benadryl while on Tagamet, though. My liver detox of drugs and all kinds of substances is very poor to begin with like for many others with ME.

It's a good question re: Zantac + Benadryl combo. I don't think it caused the same problems. I don't believe Zantac has the same impact on metabolism of other drugs that Tagamet does.

If I use Zyrtec or Allegra or any of these non-sedating newer generation H1 antagonists all I get is headache and malaise but no relief from mast cell activation and interstitial cystitis.

Thanks for your comments.

 

[Gondwanaland]

dealing with varicella zoster reactivation

Can you associate it with high arginine intake? Don't you supplement lysine?

 

[Sidereal]

Can you associate it with high arginine intake? Don't you supplement lysine?

Diet seems to have no effect on it. I only started experiencing this problem a couple of months ago when I started taking some really immunostimulatory stuff like XOS and red and brown marine algae, as discussed on the RS thread. I should give supplemental lysine a shot I suppose.

 

[Gondwanaland]

give supplemental lysine a shot I suppose

Several months ago I ate shrimp and felt some warm spots in my neck and lower back. My husband looked at them and said there were well defined red round patches on my skin. I immediately took a low dose L-lysine (~350mg) because someone I know had HZ reactivation exactly in those neurologic spots after eating shrimp. From that moment on I reintroduced dairy in my diet to boost my lysine dietary intake (yogurt and cheese) avoiding Holstein sourced whenever possible. My red patches disappeared a few hours later

I have read that due to pollution seafood has now an increased amount of arginine (+ nitrogen). I had never had problems with shrimp before.

 

[Gingergrrl]

@Sidereal

I get the odd skipped beat on Benadryl alone but nothing like the scary arrhythmias that were happening when I was doing Tagamet & Benadryl.

What was the arrhythmia like? I was just wondering how you would describe it (only if you are comfortable of course!)

You're right of course that these old timey antihistamines (and other old classes of drugs like tricyclic antidepressants which are commonly also used for sleep and pain) with strong anticholinergic effects have effects on the autonomic nervous system and heart rhythm. I think I was developing toxic levels of Benadryl while on Tagamet, though. My liver detox of drugs and all kinds of substances is very poor to begin with like for many others with ME.

I don't take Benadryl (only Zyrtec) or any AD's but was wondering if you know of other meds that might do this, too, so I can avoid them!!! I am suspecting that my liver detox of meds is poor, too, but my liver tests are all normal. They were dangerously elevated when I had mono but once they resolved, they seem okay. I know there is a liver detox profile test from Genova but I have never taken it.

It's a good question re: Zantac + Benadryl combo. I don't think it caused the same problems. I don't believe Zantac has the same impact on metabolism of other drugs that Tagamet does.

That was my sense b/c I have never had any problems with Zantac and I cannot tolerate most meds.

If I use Zyrtec or Allegra or any of these non-sedating newer generation H1 antagonists all I get is headache and malaise but no relief from mast cell activation and interstitial cystitis.

Did you know that you have mast cell activation from a histamine test being high (what I had) or b/c of specific symptoms? I apologize if I have already asked you this and forgot.

Hope you are feeling better today.

 

[Sidereal]

@Sidereal



What was the arrhythmia like? I was just wondering how you would describe it (only if you are comfortable of course!)



I don't take Benadryl (only Zyrtec) or any AD's but was wondering if you know of other meds that might do this, too, so I can avoid them!!! I am suspecting that my liver detox of meds is poor, too, but my liver tests are all normal. They were dangerously elevated when I had mono but once they resolved, they seem okay. I know there is a liver detox profile test from Genova but I have never taken it.



That was my sense b/c I have never had any problems with Zantac and I cannot tolerate most meds.



Did you know that you have mast cell activation from a histamine test being high (what I had) or b/c of specific symptoms? I apologize if I have already asked you this and forgot.

Hope you are feeling better today.

I didn't get an EKG so I don't know what it is but it felt like skipped beats occurring especially when lying on the left side or changing posture say from sitting to standing or vice versa.

There are many medications including psych meds and some antibiotics that lead to prolongation of the QT interval resulting in increased risk of fatal arrhythmias. I don't know all of them obviously but you can find lists if you google.

Liver enzymes are not typically elevated with the type of liver dysfunction we experience. As usual you can have severe problems with this illness and normal lab tests. You can be an environmental invalid due to multiple chemical sensitivity but there is no blood test to satisfy the doctor.

Serum histamine levels tend to be useless/uninformative unless you are having a draw while having an acute attack which is improbable. I diagnosed myself on the basis of signs, symptoms and good response to antihistamines. I get these frequently, as well as itching, redness, breathing problems, tachycardia etc.

 

[MeSci]

Several months ago I ate shrimp and felt some warm spots in my neck and lower back. My husband looked at them and said there were well defined red round patches on my skin. I immediately took a low dose L-lysine (~350mg) because someone I know had HZ reactivation exactly in those neurologic spots after eating shrimp. From that moment on I reintroduced dairy in my diet to boost my lysine dietary intake (yogurt and cheese) avoiding Holstein sourced whenever possible. My red patches disappeared a few hours later

I have read that due to pollution seafood has now an increased amount of arginine (+ nitrogen). I had never had problems with shrimp before.

Might not the rash have disappeared anyway?

Re Holstein cattle, I read some of that article and see that they recommend avoiding milk from A1 cows, which include Holsteins. So I did a quick search to see what other breeds produce it, and it's not as straightforward as just avoiding Holsteins. For example, the Wikipedia entry has more detail.

 

[Gondwanaland]

Might not the rash have disappeared anyway?

OR it could be varicella reactivation. I am glad I never waited it out.

Re Holstein cattle, I read some of that article and see that they recommend avoiding milk from A1 cows, which include Holsteins. So I did a quick search to see what other breeds produce it, and it's not as straightforward as just avoiding Holsteins. For example, the Wikipedia entry has more detail.

My range of choice isn't very wide. I follow my criteria the best I can. When in Europe, I just buy the best dairy availabe, which is much affordable than the crap I am pushed here. And all my inflammation markers come down

I am dealing with constant bloating since reintroducing yogurt, but at some time I will ditch it again.

I just scanned quickly the Wikipedia link (in a hurry right now) and something popped out to my eyes:

market competitors like Parmalat have consistently said that there is no evidence to suggest A1 proteins are dangerous and have warned that criticism of normal milk is damaging the entire dairy industry

When Parmalat settled down years ago in my state, it turned bad diary into a nightmare of formaldehyde, H2O2, anything you imagine to adulterate milk has been done and keeps going on years after the scandalous Parmalat break down.

So, I just choose from a "better than bad" option.

This critical review of Mercola's article seems interesting.

 

[Sherlock]

it felt like skipped beats

There is a big difference between skipped beats (bundle branch block) which can be dangerous and premature beats (PACs and PVCs) which feel like missed beats and are usually benign.

 

[Sidereal]

There is a big difference between skipped beats (bundle branch block) which can be dangerous and premature beats (PACs and PVCs) which feel like missed beats and are usually benign.

It's hard to tell when you're having it though!