A Metabolic Trap for ME/CFS?

[ebethc]

Saturated fat is hard for me to digest... high butter meals make me feel nauseated and kind of flu-ish

 

[boolybooly]

With dairy butter @ebethc you could be looking at a casein reaction.

For some people it is like a gluten sensitivity.

I dont eat any dairy milk products because it causes my other allergies to flare up, but its not the lipids. I can eat pure veg oil mayo all day (high quality mind you with minimal preservative etc) and no regrets.

 

[ebethc]

With dairy butter @ebethc you could be looking at a casein reaction.

For some people it is like a gluten sensitivity.

I dont eat any dairy milk products because it causes my other allergies to flare up, but its not the lipids. I can eat pure veg oil mayo all day (high quality mind you with minimal preservative etc) and no regrets.

I can eat cheese in moderation, and butter even more moderately and be fine... A rich cheese is okay every once in a while, but heavy butter is never okay... I think it's the fat that's the bigger problem...The problem w dairy is the richness (ie, fat), and they're constipating.. High butter content is not constipating, but I can't tolerate it (ie french food)..

 

[alex3619]

The idea of this being some sort of metabolic trap that clenches harder with each crash certainly makes a lot of a sense for me.

The literature typically discusses sudden or slow onset. Many of us relate to a concept of staged onset. After each insult we are worse and never regain the former level prior to that insult.

Its typically a virus, but can also include an exercise program for me. Event by event I have slowly declined. Improvement is however very very slow, and probably more about effective management rather than improvement.

 

[alex3619]

heavy butter is never okay... I think it's the fat that's the bigger problem

Butter is a source high in arachidonic acid, a proinflammatory hormone precursor. How do you react to organ meats? They are even higher. I use this as an excuse to not eat liver, my Kryptonite.

 

[ebethc]

Butter is a source high in arachidonic acid, a proinflammatory hormone precursor. How do you react to organ meats? They are even higher. I use this as an excuse to not eat liver, my Kryptonite.

haha... no liver for me either! you can put all the onions and ketchup you want on it, I still know it's liver... every 5 years I eat either sweetbreads or pate, but that's it..

Is cheese high in arachidonic acid? probably different for high fat (cambozola, my fave) vs lower fat (swiss, mozzarella, parmesan)

I put cream in my coffee, use a small amount of butter in cooking (~few times a month), but love cheese.. I don't eat it in great quantities b/c it causes constipation (my kryptonite). I also love ice cream, too, but don't eat it b/c it's too rich and I can't exercise enough to burn it off..

 

[pibee]

Alcohol releases free arachidonic acid. Free arachidonic acid inevitably is metabolised into eicosanoids. Its very likely this is the primary mechanism for alcohol poisoning, and why PWME have such an issue with alcohol. .

Just want to comment on this, because not insignificant part of pwME in fact feel better with alcohol, there is a thread about it on PR.
I am one of them and alcohol makes all my symptoms better, especially when I am already sobering and the next day..

 

[alex3619]

Just want to comment on this, because not insignificant part of pwME in fact feel better with alcohol, there is a thread about it on PR.
I am one of them and alcohol makes all my symptoms better, especially when I am already sobering and the next day..

Alcohol can deplete you of arachidonic acid, which in some cases might be a good thing. Or its something else. We definitely do not have all the answers, especially for subgroups.

 

[alex3619]

Is cheese high in arachidonic acid?

I would have to investigate this to find out, it most definitely will depend on the type of cheese, but I think cheese, from memory, is generally lower in arachidonic acid.

 

[pibee]

Alcohol can deplete you of arachidonic acid, which in some cases might be a good thing. Or its something else. We definitely do not have all the answers, especially for subgroups.

Definitely no answers By the end of 2018, hopefully

I'd bet on vasodilatation/vasoconstriction effect.

I remember before knowing my condition is ME/CFS, when I was drinking and getting sobber-ish at 3-4am, but still under influence... i was thinking "damn, i should take driving test in this condition" , my brain fog and other cognitive symptoms were always closest to normal.

 

[jaybee00]

@Janet Dafoe (Rose49) @Ben H

Hello,

I understand that Dr. Phair et al. want to keep a lid on the metabolic trap until you have investigated further, but I wondered if it might be possible to query Dr. Phair as to what supplements/drugs might have the potential to worsen the trap...

e.g. whey protein, amino acids, DCA, Q10, NAD+, B vitamins, Mifepristone, rapamycin, etc.

Definitely not looking for an endorsement of any of these substances, but, if possible, a red flag indication that perhaps one or some of these have the potential to potentiate the trap....

Thank you.

 

[Galewind]

With dairy butter @ebethc you could be looking at a casein reaction.

For some people it is like a gluten sensitivity.

I dont eat any dairy milk products because it causes my other allergies to flare up, but its not the lipids. I can eat pure veg oil mayo all day (high quality mind you with minimal preservative etc) and no regrets.

i didn't even know dairy butter has much casein in it i thought it was mostly just fat.

 

[Kenshin]

Butter is a source high in arachidonic acid, a proinflammatory hormone precursor. How do you react to organ meats? They are even higher. I use this as an excuse to not eat liver, my Kryptonite.

I love butter but hate organ meats. I tend towards slightly higher fat and lower carbs just because it seems easier to digest. You might call my diet "Keto-curious".

 

[boolybooly]

i didn't even know dairy butter has much casein in it i thought it was mostly just fat.

Well I guess it is mostly, as I understand it trace amounts of casein are present in butter, much lower proportions than cheese.

I am happy to admit I am not an expert, just thought it might be worth considering dairy is something I avoid personally because it sets off allergies, so it struck me as worth mentioning.

Its interesting because casein breaks down to casomorphins which are opiods which can cause constipation (and also release histamine), more in cheese than butter but if one was sensitive then ...

Personally I love organ meats, sorry animals, I say a little thankyou every meal and buy free range, but I find quality is variable and lamb especially can vary from good to not at all good for me, which I think might be to do with the things they use in dips to kill ticks and other parasites, but I cant prove it.

 

[Galewind]

Cheese im sensitive too gives me instant feeling of needing fiber. Ive heard cheese is addictive that may explain w hy cause it breaks down to opiods?

 

[jake45]

what meats do you guys recommend staying away from?

 

[boolybooly]

For me personally @jake45 I have a list but the same might not apply to anyone else. I am very intolerant of a lot of foods most people take for granted, like potatos and tomatos, high amine and high salicylate foods.

I keep a food diary which helps me decide on the basis of what causes a reaction and work out the theory later but there is always the possibility I have misunderstood.

Its hard to know what is good for others but I am normally safe on pork and beef cooked from fresh.

Chicken gives me brain hype and salmon and other fish typically give me a day of headache at the moment but didnt used to, however my food diary suggests this may be due to often eating lentils the day before the fish and headache so I will have to stop red lentils and try again, lentils have a reputation for causing migraines for some people.

Turkey I think depends a bit what it has been fed on. I react badly to soya and I suspect that there is soya in some turkey feed, sometimes turkey makes me feel the same way as eating soya, neuro-shakey and muscle wasting type muscular ache, but sometimes it does not. I think perhaps it is better if cooked for longer like a Christmas roast.

I read chicken hype was due to amines and they are concentrated in the skin but even avoiding skin is not enough. Its dose dependant and cumulative so I can get away with small amounts with long intervals of a week or so between which is good because I can eat chicken livers sometimes which is nutritious.

 

[raghav]

Can somebody tell me whether there were any patients in the severely ill group of 20 from whom blood samples were collected for BigData study, who had gastro intestinal symptoms or IBS ? I want to know whether IBS present patients will constitute a separate sub group ? @Ben H can you find out from Ron Davis or somebody else ? Because my fatigue sky rockets whenever I have bowel upsets. I want to know how that manifests in the data collected. Thanks in advance.

 

[Wishful]

@boolybooly , I too am very sensitive to potatoes and tomatoes. I assume it's the solanine and tomatine.

I was sensitive to meats--or rather the fatty acids not accompanied by adequate carnitine--for a while, but I could eat it if I took supplemental carnitine. Beef has plenty of carnitine; chicken doesn't. After a while of supplementation, I lost that sensitivity. I didn't have the symptoms you mention, but the fatty acids increased my general ME symptoms. I don't really think you have the same problem, but you could try carnitine if you're in the mood for experimenting.

 

[nanonug]

my fatigue sky rockets whenever I have bowel upsets

Welcome to the club! Whether it's causative or just correlated is something that I would like to know as well.