alcohol helps me?

[sb4]

@Anetta What is wit beer and do you notice this effect from all alcohol?

 

[andyguitar]

@Anetta did you know that alcohol probably raises the metabolic rate? It may be this very simple reaction that makes you and others feel better.

 

[Anetta]

@Anetta What is wit beer and do you notice this effect from all alcohol?

by "wit" I mean cloudy unfiltered beer, Wit is white from Dutch

 

[andyguitar]

Just been looking at 'Wit Beer' Contains some herbs and bitter orange peel. Bitter orange peel is used in Chinese medicine. It's probably a stimulant. One of the chemicals in it which might be of interest is Synephrine. Depends if the amount you get from Wit beer is enough to have an effect. Anyone ever tried chewing bitter orange peel?

 

[andyguitar]

Ah ha! Wit beer also contains coriander which is a stimulant.

 

[Cheryl M]

I have been on pregabalin (Lyrica) for five and a half years. I was put on it after undiagnosed akathisia caused a suicide attempt. The psychiatrist then legged it because hardly anyone wants to live in West Cumbria, and certainly not psychiatrists apparently (I don't think I have ever seen one more than once round here). I then went into remission which lasted a year and a half; on David Bell's scale I improved from 20% to 70%. I had muscle tone for the first time in my adult life. That was the first time in twenty years that a doctor had done something that helped.

I relapsed slowly and am now not much better off than I was before the suicide attempt. I have progressive memory loss which everyone is trying to blame on the pregabalin, but I can't stop taking it. Firstly, the akathisia never went away and it is only the tranquillising effect of the pregabalin (plus a few other things like magnesium) that's kept me alive so far. Second, when I try decreasing the dose of pregabalin my remaining muscle tone vanishes and it is almost impossible to move; the most troubling thing is that my chest muscles almost stop working and I feel as if there's a tonne weight on my chest. I have no equipment to help me breathe apart from nasal strips so to put it bluntly, if I stop taking the pregabalin I think I'm going to die. There's no specialist in charge of my case and no-one I can ask about alternative drug options.

Alcohol temporarily reverses the memory loss and makes my brain work again; I remember concepts like music, fun and happiness. Unfortunately, I am invariably worse afterwards and the deterioration is permanent. It's quite frightening because I have no idea why alcohol would have this permanent effect and again, there's no-one I can ask about it.

 

[HABS93]

The tremors I have feel so much better from a glass of wine once a day. Its just not something you can microdosed like LSD. However it's nice to have something that can take you down a notch. We do need that for a mental relief from time to time .

 

[Dufresne]

So Dr Goldstein is the only CFS doc I know of who has suggested alcohol could relieve symptoms for some.
It's in the second box from the top right (ETOH).

He believed we suffer from limbic system dysregulation and that we could improve or correct the glitch by "Tuning the Brain." He theorized we tended to fall into types, and that's what this treatment chart is getting at. So if one does wwell on alcohol they might want to consider some of the other drugs in that box.

 

[Seven7]

. what can I take out of it?

May be the vassodilation effect. Yes there are such drugs. Also natural teas for you too test.
Google natural vassodilators teas and see if they also help.
This is not intended as medical advice, since is a tea, I imagine you can try if you are not allergic to the ingredient. You can ask your doctor about options too.

 

[Anetta]

View attachment 36402

So Dr Goldstein is the only CFS doc I know of who has suggested alcohol could relieve symptoms for some.
It's in the second box from the top right (ETOH).

He believed we suffer from limbic system dysregulation and that we could improve or correct the glitch by "Tuning the Brain." He theorized we tended to fall into types, and that's what this treatment chart is getting at. So if one does wwell on alcohol they might want to consider some of the other drugs in that box.

I am sorry but in which box there is alcohol?

 

[Cheryl M]

@Anetta Alcohol is listed as "ETOH" (a shorter way of writing "ethanol")

 

[sflorence]

View attachment 36402

So Dr Goldstein is the only CFS doc I know of who has suggested alcohol could relieve symptoms for some.
It's in the second box from the top right (ETOH).

He believed we suffer from limbic system dysregulation and that we could improve or correct the glitch by "Tuning the Brain." He theorized we tended to fall into types, and that's what this treatment chart is getting at. So if one does wwell on alcohol they might want to consider some of the other drugs in that box.

I own the Betrayal By The Brain book but nowhere in the book do I see that chart.. Where did you find it from?

Also, how the hell do I read that thing!? It seems like I need to profile myself by the drugs in the middle, but I have only tried one of them (naphalozine)

It seems like that's a pretty long list of things to try, shots into the dark. His book had a much more straightforward approach.

Alcohol really, really helps me.

thanks

 

[IThinkImTurningJapanese]

Am I crazy that wit beer is the only thing that significantly helps me with CFS?

Maybe , maybe not.

Do you have problems with wheat? I've been tested positive for wheat sensitivities and have had to follow a rotation diet with wheat consumption. But beers brewed with wheat have given me relief before.

 

[Dufresne]

I own the Betrayal By The Brain book but nowhere in the book do I see that chart.. Where did you find it from?

Also, how the hell do I read that thing!? It seems like I need to profile myself by the drugs in the middle, but I have only tried one of them (naphalozine)

It seems like that's a pretty long list of things to try, shots into the dark. His book had a much more straightforward approach.

Alcohol really, really helps me.

thanks

Regarding the chart, it must have come from one of his other books. Now when I look it up on Google images it leads me back to our forum.

Yes, I believe the idea is to try the substances in the middle and then go from there.

Anything that gives me a buzz will raise my PEM threshold. If I was actually drunk I could workout or go for a run. However it's been years since I've indulged. I've only consumed alcohol once in the last ten years. Opioids and GHB were also quite effective, and then stimulants like methylphenidate and dexedrine worked somewhat as well.

I'm quite sure this has to do with my basal ganglia and it's reward system. Cort has some great articles over on healthrising on the subject. My thorough experimentation suggests the basal ganglia and its dopamine system don't work right because of a combination of oxidized terrain caused by MCAS and/or mycotoxin exposure, along with the inflammation resulting from interferon (cellular immune) activity in the brain. The interferon is the real ass-kicker here; if I stimulate cellular immunity nowadays I go from a mild case of CFS to housebound with major depression, and it goes on for months. Exactly the kind of thing that's seen in interferon-induced depression/fatigue.

 

[PhoenixDown]

Alcohol makes me feel poisoned even from small quantities. I used to tolerate it but as my ME gradually got worse so did my intolerance of alcohol.

 

[Prefect]

@Prefect Are you using alcohol to help with symptoms and are you drinking enough to get in alcoholic ketoacidosis on its own or is it a complication of this disease?

It's been mentioned before but if you are not taking B1 I would recomend it. I have no reason to have thiamine deficiency but I notice it helps particularly with post carb symptoms.

I'm not sure what mechanism works for me. I take it to help with my symptoms. Ketoacidosis is just an unwanted side effect, because I go weeks on a 1 litre a day whiskey without eating and eventually end up being hospitalized. I do try to take B1 when on binges but I'm in such a non-caring state during those times that I forget to do so. In a way my binges have become a form of passive suicide. I'm just so tired of not functioning the way I used to. I TRUELY miss myself, that's all.

 

[Dufresne]

I posted a thread on it here a while back:

https://forums.phoenixrising.me/threads/oh-alcohol.55862/

Don't take the direction on it I did though, as my tolerance went up my binges got more and more severe (a litre of whiskey a day) and I've been in and out of detox over the last year, my driver's license is suspended, have an inflamed fatty liver, and likely have brain damage. Nowadays I no longer know if my cognitive deficits are from this condition or brain damage from alcohol abuse. Just sayin.

I used to get such relief from alcohol, but I'm a recovering drunk and I eventually had to give it up.

In the other thread you were rhetorically asking if it was a GABA thing or a dopamine thing. In my case I can say that it was both. Alcohol is complicated so it was probably even more than that. It certainly dampened my pathological immune reactivity.

You mentioned there is a time after a binge that you feel better, how long does that last? I used to feel better for 3-4 days after stopping but as my immune system came back online i'd begin to feel like shit again. The amount of cold sweating following a binge was astonishing. I'd have three layers on from head to toe and every time I'd lay down I'd sweat profusely. This would go on for days, and yet I still felt better.

Eventually I came to learn I have a babesia infection. One of the symptoms of which is drenching sweats, or night sweats. Probably called 'night sweats' because that's when people tend to lie down; something about this position would accelerate the killing. Those few days after drunks were the only time I ever got babesia sweats, and this only began to happen toward the end of my drinking, after I developed PEM, but I'd had the pathogen for decades. It's worth noting babesia can be life threatening for alcoholics. Something about drinking prevents our immune system from controlling it.

A lot of Lyme doctors are now saying there's a correlation of anxiety to babesia infection. I know this to be the case with me. I've suffered terrible anxiety in my life and drinking was my crutch for a couple decades. But the sicker I became the less tenable this grew as my behavior became more and more erratic, and I felt more and more poisoned by the stuff.

Anyway, babesia caused me anxiety, cognitive dysfunction, misery, and MCAS, and when I drank this all went away. Even my PEM went away. And then when I came off the binge my immune system would get back on top of the bug (to some extent) and my misery would return. I assume the bug took advantage of the alcohol to proliferate, and in so doing ceased its other survival strategy: inflaming my system.

Babesia is only present in the circulatory system, but this could perhaps contribute to your POTS. And I can tell you it can mess up your head really badly. It can do this through mast cell activation, and also through plugging up the capillaries in your brain. And alcoholics are more susceptible to this infection. Might be worth looking into.

I traded a hopeless alcoholic lifestyle for 1 malarone per day and I feel infinitely better. Of course it wasn't that easy but that's where I'm at now. Not cured, but pretty damn good all things considered.

 

[knackers323]

View attachment 36402

So Dr Goldstein is the only CFS doc I know of who has suggested alcohol could relieve symptoms for some.
It's in the second box from the top right (ETOH).

He believed we suffer from limbic system dysregulation and that we could improve or correct the glitch by "Tuning the Brain." He theorized we tended to fall into types, and that's what this treatment chart is getting at. So if one does wwell on alcohol they might want to consider some of the other drugs in that box.

@Dufresne what are the dopamine drops mentioned?

 

[Dufresne]

@Dufresne what are the dopamine drops mentioned?

I don't believe I mentioned anything about dopamine drops. What a nice thought though...

 

[knackers323]

I don't believe I mentioned anything about dopamine drops. What a nice thought though...

They are mentioned in the attachment you posted