Alcohol tolerance before ME/CFS

How well did you tolerate alcohol before ME/CFS?

  • I had no prblems tolerating it

    Votes: 25 62.5%
  • i had some problems tolerating it

    Votes: 12 30.0%
  • I had many problems tolerating it

    Votes: 3 7.5%

  • Total voters
    40

mariovitali

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I searched for similar polls but couldn't find one asking about alcohol tolerance before ME/CFS. Looking forward to your responses!

Some clarifications about the options :

1- I had no problems tolerating it : This means that you always had a positive mood with alcohol, you enjoyed having it.

2- I had some problems tolerating it : This option means that you were able to drink but in a limited fashion, otherwise you would have issues with it.

3- I had many problems tolerating it : This option means that you were abstaining from alcohol because it would make you feel sick immediately after drinking.
 
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Ravn

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Could have 1 small drink/day, maybe 2 if sipped over several hours and with food. Too much and first the drink would start tasting unpleasant, kind of bitter and metallic. Second I'd get IBS type symptoms. Can't recall any other effects but my last drink is quite a while ago now.
 

alkt

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pre m e. I was a social drinker light and dark beers no problems afterwards beers caused ibs type problems where it got to the point I could not finish a pint of bitter /dark beer . changed to light beers/ lagers stomach responded the same way for a number of years after that I drank ciders very refreshing . unfortunately after major crashes I am know mostly housebound and do not see the point of drinking alone .
 

Runner5

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I got alcohol poisoning my first time getting drunk and that was on beer. I just have no tolerance and hate the taste so I don't drink. If I ever went out -- which I don't -- but if I did, I think a strawberry margarita might be nice. I had one once and it was good and I didn't get sick.
 
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I used to drink like a fish! If I'm in a recovery phase, that ability briefly returns. But mostly, I can't even finish a single drink any more. Being able to drink is usually a good sign that I'm in a recovery phase, and that I can get away with a little bit more activity than usual without PEM.
 

mariovitali

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I used to drink like a fish! If I'm in a recovery phase, that ability briefly returns. But mostly, I can't even finish a single drink any more. Being able to drink is usually a good sign that I'm in a recovery phase, and that I can get away with a little bit more activity than usual without PEM.
This is very interesting information. Actually it would be interesting to see whether alcohol tolerance has changed in ME/CFS patients and in what way.

A good question then is why does this happen? Could it be the aftermath of a Liver insult?
 

Wayne

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it would be interesting to see whether alcohol tolerance has changed in ME/CFS patients
Hi @mariovitali,

I developed serious alcohol intolerance early on in my CFS journey. I discovered even a single drink would leave me with a serious hangover for as long as 3-4 days. My impression is that most people with CFS experience at least some degree of alcohol intolerance. I could be wrong in that assumption however.​
 

mariovitali

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Hi @mariovitali,

I developed serious alcohol intolerance early on in my CFS journey. I discovered even a single drink would leave me with a serious hangover for as long as 3-4 days. My impression is that most people with CFS experience at least some degree of alcohol intolerance. I could be wrong in that assumption however.​
Right, so next question is why. Obviously you know where i am taking this : The Liver
 

mariovitali

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I just received a message from a Swiss Doctor. He has already a patient who was found to have an F2 Liver Fibrosis.

He has met a few more people with ME/CFS with childhood liver problems.
 
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Wayne

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Right, so next question is why.
Just recently I've been thinking about Hepatitis C, and thinking about getting tested. I've heard the test for that is pretty simple, inexpensive, and reliable. I can see where Hep C could easily lead to alcohol intolerance. -- I drink lots of milk thistle tea on a regular basis; one of my favorite ways to support my liver--besides eating yummy beets. :)
 
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My ALT was raised while taking Imunovir. My normal ALT was 55, which is slightly raised, but not an issue.

I've had a liver ultrasound, and everything looked fine, although interestingly, there was so much GI bloating that some of my organs weren't visible. That at least allows me to prove some of my symptoms are real.
 

mariovitali

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My normal ALT was 55, which is slightly raised, but not an issue.
That's the issue right there ;-)

Why
do you have slightly raised ALT in the first place? Could this mean that there is an issue with your Liver which is -to this day- undiagnosed?

Ultrasound does not rule out Liver Disease unfortunately. You could have a Fibroscan though to check things out.

The devil hides in the details.

@Hip Do you see a pattern here?
 

JES

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Hi @mariovitali,

I developed serious alcohol intolerance early on in my CFS journey. I discovered even a single drink would leave me with a serious hangover for as long as 3-4 days. My impression is that most people with CFS experience at least some degree of alcohol intolerance. I could be wrong in that assumption however.​
I get transient improvement after drinking one to two portions of alcohol. The improvement is different and more total than e.g. from drinking coffee. In this other thread another two users reported this same temporary improvement effect. So clearly this is another area in which CFS/ME patients react differently and to be honest it doesn't surprise me much, nothing seems predictable with this disease.
 
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That's the issue right there ;-)

Why
do you have slightly raised ALT in the first place? Could this mean that there is an issue with your Liver which is -to this day- undiagnosed?

Ultrasound does not rule out Liver Disease unfortunately. You could have a Fibroscan though to check things out.

The devil hides in the details.

@Hip Do you see a pattern here?
Here's the thing, though: the normal range goes up to 40 or 56, depending on who you ask. I'm only over when you use that older, lower range. ALT would be expected to be over 100 in cases of cirrhosis or whatever.

This website says 55 is high normal, but not out of range: https://www.emedicinehealth.com/liver_blood_tests/article_em.htm. 56 is the cut-off. Ranges seem to have been slightly increased over the years, which may be due to a higher toxic burden in modern diets (including more social alcohol).

I also don't appear to have any other symptoms on your spreadsheet. I'm pretty sure it's not a liver issue in my case. My genes do indicate that I'm a slow metaboliser of certain substances, including drugs and caffeine, and I believe this is what possibly accounts for my ALT numbers. Some drugs use the same pathway, so if you're a slow metaboliser, that will have an effect.
 

mariovitali

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@JES

Please find my hypothesis on why you feel better by taking Alcohol in this thread :

https://forums.phoenixrising.me/ind...k-you-for-everything.60030/page-2#post-979980

@adambeyoncelowe

I totally understand your way of thinking. Please note however that i have at least 4 cases of ME/CFS patients with normal ALT Levels and F2 Liver Fibrosis. In other words you cannot rule out that you do not have Liver Disease unless you have a Fibroscan or have Liver Biopsy from multiple sites of the Liver.

I also wanted to clarify that the spreadsheet does not contain symptoms but a number of Conditions/Infections (apart from Cholecystectomy which is an operation) that require an awful lot of tests in order to rule them out, hence the difficulty of diagnosis in any of these conditions listed.
 
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Sorry, I did indeed mean conditions. I looked them up and I didn't seem to fit the profile.

Also, ultrasound appears to be more accurate than some other methods for assessing the need for a liver biopsy: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2909550/

Fibrosis shows up as bright spots on the scan. There are poor outcomes with a range of liver tests, and a biopsy is not without risk either, so in the absence of sufficient evidence indicating liver problems, I suspect I'd struggle to get a doctor to investigate further.

I'm already on milk thistle (which I've taken for ~13 years), so I suspect that's about all I can do for now.
 

mariovitali

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Sorry, I did indeed mean conditions. I looked them up and I didn't seem to fit the profile.

Also, ultrasound appears to be more accurate than some other methods for assessing the need for a liver biopsy: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2909550/

Fibrosis shows up as bright spots on the scan. There are poor outcomes with a range of liver tests, and a biopsy is not without risk either, so in the absence of sufficient evidence indicating liver problems, I suspect I'd struggle to get a doctor to investigate further.

I'm already on milk thistle (which I've taken for ~13 years), so I suspect that's about all I can do for now.

FYI, the Research paper in link you submitted says the following :

Transient elastography, which has demonstrated good diagnostic performance[36] and is becoming more widely used in hepatology practice, was not included because it is a non-imaging technique and currently is not an option on standard ultrasound equipment. A review to establish the performance of stand alone ultrasound is useful because ultrasound scans are often provided by medical imaging departments that do not have access to elastography.
So the "other methods" do not include Fibroscan which is the second best after Liver Biopsy.

I do understand that it is not easy to go through the process of Liver biopsy but given your ALT Levels it may be a good idea to take a Fibroscan test given the lack of any warning signs despite Liver Fibrosis found in some ME/CFS Patients
 
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FYI, the Research paper in link you submitted says the following :



So the "other methods" do not include Fibroscan which is the second best after Liver Biopsy.

I do understand that it is not easy to go through the process of Liver biopsy but given your ALT Levels it may be a good idea to take a Fibroscan test given the lack of any warning signs despite Liver Fibrosis found in some ME/CFS Patients
As I said, though, it's not as easy as 'taking' the test. I would have to convince an NHS GP that there's significant need for the test despite the ultrasound, which clearly states that my liver and nearby organs are all healthy. It's unlikely to happen.
 

mariovitali

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@adambeyoncelowe

Having lived in the UK , i know exactly what you mean.

All i can say is that i will try to talk to some Researchers and the NHS to try to change this point of view at least for ME/CFS Patients. I happen to know some people there that may help on this.

I will keep you posted