Better with alcohol

[deleder2k]

Sounds like a partial poorman's tt test to me.

Not sure if it matters if I get a POTS diagnosis or not. Tried sea salt and propranolol and it doesn't really help. I am now in the Rituximab study so new drugs is off the table anyway...

 

[NK17]

Yes. I am trying that now. Not sure how much I should take though. And not sure if it helps or not. Tastes like ***. Maybe I should try sea salt pills instead.

Yes it tastes like #%*>. I'm working on a homemade formula that doesn't make me want to gag. I really can't drink any electrolyte drink with sugar substitutes and I have severe gastro issues, amongst them nausea. I like lemon, ginger and cola natural flavors and I cook and eat with plenty of sea salt, but drinking it is another story.

 

[NK17]

Not sure if it matters if I get a POTS diagnosis or not. Tried sea salt and propranolol and it doesn't really help. I am now in the Rituximab study so new drugs is off the table anyway...

And if you won't get Rituximab at least you'll get IV saline (I'm whispering this because I want you to get R .

 

[deleder2k]

Hehe, yes, I will get saline then. But that don't last for many days, does it? I'm in pretty bad shape, but the doctor at the hospital told me I was not bad enough to benefit from saline. On the other hand I will get 8mg of Dexamethasone an hour before the infusion. They told me that a lot many patients benefit from it. Too bad half-life is 190 minutes :/

 

[Gingergrrl]

Not sure what that is. I was told to stand for ten minutes that was it while BP and pulse were monitored.

@deleder2k You know, the TTT that I had in the hospital really was not that much better. I was strapped to an actual tilt table and then they stood me up for 15 min and that was it. It was really rushed b/c it was re-scheduled b/c they couldn't get the IV in my arm. I felt dizzy and short of breath but I am not sure the test adequately captured my symptoms either.

We really need CoE Centers of Excellence where we can go and be checked, monitored, tested and treated.

@NK17 Some day you and I are going to open one when we are better. I don't know how exactly we will do this but this is my dream for the future. And everyone from PR can come for free.

 

[deleder2k]

I wanna get in for free. Sounds like a good plan. Hopefully Rituximab will eliminate my POTS and standing issues. Ill keep you posted.

 

[TeresaBCN]

I know alcohol thins the blood, maybe that helps with the POTS. Helps with my dizziness to start with but then feel a lot worse an hour after!

 

[Marky90]

I wanna get in for free. Sounds like a good plan. Hopefully Rituximab will eliminate my POTS and standing issues. Ill keep you posted.

Hey man! Im not diagnosed with ME, my main sypmtom is fatigue, but i also feel much better when drinking! I wonder if i have like a ME light, possibly due to genes. I dont know. Im also from Norway so let me know if you wanna chat!

 

[jimmy86]

sometimes I feel better with beer, and I can easily drink 2 or 3. sometimes I feel bad (headache) after one sip. I think it depends on how bad my POTS is....
beer, especially wheat beer, is also an electrolyte drink. in Germany people drink it after sports (oftentimes without alcohol).

 

[Justin30]

I was getting really bad dizziness, vertigo and fainting sensation every morning when i would wake up. As well as through out the day.
The new Biovista results came out talking about Trazadone. Then I read a thread that says traz causes Orthostatic Hypotenion. Stopped the traz and am using another sleep med now and the OI symptoms have disappeared for the last 3 days.

I know most people with ME are very sensitive to almost everything so you may want to check the side effects of your medication.

Hope this helps

 

[knackers323]

I talked to one of the doctors engaged in the Rituximab study at Haukeland yesterday. She said that another patient gets better with alcohol too. They found it very interesting. I was told that they probably would do some sort of gene analysis on both of us!

Hi @deleder2k did you ever have any gene study done?

 

[gregh286]

Hi @deleder2k did you ever have any gene study done?

Alcohol helps 2 ways.
Activates Mtorc via insulin release from drinking beer.....wine.....cider. think alcohol is sugar free......check your blood sugar levels it goes high when drinking.
Also alcohol can be used for cell fuel replacement when their is PDH issue.

 

[deleder2k]

Hi @deleder2k did you ever have any gene study done?

At the hospital, but I don't know any results.. Not sure if I want to do 23andme. I'm not sure they can give me information that I would benefit from.

 

[deleder2k]

Alcohol helps 2 ways.
Activates Mtorc via insulin release from drinking beer.....wine.....cider. think alcohol is sugar free......check your blood sugar levels it goes high when drinking.
Also alcohol can be used for cell fuel replacement when their is PDH issue.

Is alcohol, or ethanol used instead of glucose? How does this work?

 

[knackers323]

Alcohol helps 2 ways.
Activates Mtorc via insulin release from drinking beer.....wine.....cider. think alcohol is sugar free......check your blood sugar levels it goes high when drinking.
Also alcohol can be used for cell fuel replacement when their is PDH issue.

assuming most of us have the same underlying issue, have you got any idea why alcohol makes some better and others worse?

 

[gregh286]

assuming most of us have the same underlying issue, have you got any idea why alcohol makes some better and others worse?

I think the pots people are badly affected by it.
So if we find out why there is pots and some don't then it would help
The vasodilator effect is counter productive for them.
I run at 140/80 all the time and never had pots.

 

[knackers323]

@gregh286 riddle me this mate. Haha

I seem to get benefit from the alcohol, next day too like you. And a couple of other things that thinned my blood or raised blood pressure but got zero from the no2 black.

Any idea whats going on here?

 

[gregh286]

Alcohol = alternative cellular energy source when pdh pathway decides to go awol.
Alcohol = potent mTORC activator via insulin channel.

Arginine and citrulline malate are krebs cycle intermediaries.
Old theory from fluge and mella thought arginine was responsible for relief in patients via NO production. I believe this is not so....relief from arginine come from turbo charging krebs and boosting metabolic output.
I don't use No2 black now......it's too slow release. Better with arginine and malate mix.....this is my bad boy now
http://www.trec-nutrition.co.uk/aakg-mega-hardcore-120-capsules.html

 

[knackers323]

Damn. I dont have the specs with me but ivr tried aakg and again I got nothing from it

 

[gregh286]

Did you try protein fuels like biotechusa?
Keep trying pal


http://www.carethy.co.uk/dietetics-...999076204441&gclid=CLrj5rWb79ICFcsV0wod-tEFQw