A Metabolic Trap for ME/CFS?

[ljimbo423]

I may be wrong but didn't Ron Davis says the mitochondria is fine, it's something in the serum affecting the mitochondria..?

Yes he did. I think it's toxins from the gut that are causing the mitochondria to not function right.

Perhaps the 'trap' is the constant production of 'bad' metabolites in the serum affecting our mitochondria? ( I think I'm on the same page )

The mitochondria have a big influence on the innate immune system, the creation of reactive oxygen species (ROS), which are basically toxins and inflammation.

So based on how much influence they have over our health. It's certainly possible that there is a trap that is "self feeding" so to speak.

I'm not taking any chances, I'm treating both my gut and my mitochondria, more and more aggressively, almost every day now.

 

[MonkeyMan]

Belbyr said: ↑
So is the liver starting it? I for one was on long term antibiotics for acne when this all started. I recently was on antibiotics for what doctors thought was an infection... Turned out to not be one, now I am out of work again for the past month.

I am absolutely convinced that the 35-40 courses of antibiotics I took over many years is what caused my CFS.

Same here. I was fine until I started taking a broad-spectrum antibiotic for my acne ... and then ME/CFS hit me like a truck. Overwhelming fatigue, mental confusion, muscle aches, memory loss, disfiguring cystic acne ... a total nightmare. Nystatin allowed me to function on a basic level (thank you, William Crook!), but I'm still really struggling. I brew and drink kefir, which helps. But I'm praying for an answer.

 

[ljimbo423]

Belbyr said: ↑
So is the liver starting it? I for one was on long term antibiotics for acne when this all started. I recently was on antibiotics for what doctors thought was an infection... Turned out to not be one, now I am out of work again for the past month.


Same here. I was fine until I started taking a broad-spectrum antibiotic for my acne ... and then ME/CFS hit me like a truck. Overwhelming fatigue, mental confusion, muscle aches, memory loss, disfiguring cystic acne ... a total nightmare. Nystatin allowed me to function on a basic level (thank you, William Crook!), but I'm still really struggling. I brew and drink kefir, which helps. But I'm praying for an answer.

I hear you! You might want to try supplements to help protect the mitochondria and help them function better.

Like BCAA's, coq10, alpha lipoic acid, etc. I think these help overcome the dysfunctions in the mitochondria. They are helping me a lot.

Since I started taking BCAA's at 10 grams a day, almost a month ago. I haven't had one flare, even though I have been much more active.

 

[MonkeyMan]

I hear you! You might want to try supplements to help protect the mitochondria and help them function better.

Like BCAA's, coq10, alpha lipoic acid, etc. I think these help overcome the dysfunctions in the mitochondria. They are helping me a lot.

Since I started taking BCAA's at 10 grams a day, almost a month ago. I haven't had one flare, even though I have been much more active.

Thanks for the tip. I'll try the BCAA's. But I must say that I'm not optimistic. Just about every single supplement I've ever tried -- and I've tried hundreds, including several individual amino acid supplements -- makes me feel worse. It's like my immune system responds to anything it doesn't recognize as if it were a deadly threat.

 

[ljimbo423]

Thanks for the tip. I'll try the BCAA's. But I must say that I'm not optimistic. Just about every single supplement I've ever tried -- and I've tried hundreds, including several individual amino acid supplements -- makes me feel worse. It's like my immune system responds to anything it doesn't recognize as if it were a deadly threat.

I have the same problem with supplements. The BCAA's were one of the very few supplements I had no side effects from at all.

The other thing I've learned is that I can take very low doses of supplements and work my way up to much higher doses but very slowly.

I can only tolerate 10-15 mg alpha lipoic acid at a time but I've worked my way up to 575 mg!

 

[Belbyr]

What type of BCCA are you taking and how much?

I am currently on ALA, COQ10, and just added B Complex and Vitamin D

 

[mariovitali]

What kind of antibiotics did you take? What are the names ?

 

[MonkeyMan]

What kind of antibiotics did you take? What are the names ?

Tetracycline. It was for acne. I had taken tons of other antibiotics (not sure which ones) as a kid for other reasons (strep throat, surgical prophylaxis, etc.), and these brought about the imbalance in my gut that caused the acne, but it was the tetracycline that pushed me over the edge and caused the ME/CFS.

 

[mariovitali]

@drewmaster

Gut issues is one possibility however another one is Liver injury :

https://livertox.nih.gov/Tetracycline.htm

 

[MonkeyMan]

@drewmaster

Gut issues is one possibility however another one is Liver injury :

https://livertox.nih.gov/Tetracycline.htm

Very interesting. I wonder if the intolerance that I and so many others with ME/CFS have to nutritional supplements is, in fact, not a sign of an over-reactive immune system, but instead an inability of the liver to process these substances. Acne, fatigue, brain fog, and muscle aches all get worse when I take a new supplement. And if I have a drink of alcohol, the acne goes into over-drive. And I feel worse 2-3 hours after meals. All of these would point to liver injury, I would think.

So I guess my question would then be, if the metabolic trap theory proves correct, will that paradigm align with liver injury being central to the problem so many of us are facing?

 

[Tally]

. I wonder if the intolerance that I and so many others with ME/CFS have to nutritional supplements is, in fact, not a sign of an over-reactive immune system, but instead an inability of the liver to process these substances. Acne, fatigue, brain fog, and muscle aches all get worse when I take a new supplement. And if I have a drink of alcohol, the acne goes into over-drive. And I feel worse 2-3 hours after meals.

That sounds more like comorbid MCAS

 

[ljimbo423]

What type of BCCA are you taking and how much?

I am currently on ALA, COQ10, and just added B Complex and Vitamin D

I'm taking this BCAA. It's made by fermentation instead of duck feathers. Making it a better quality supplement than ones made from duck feathers.

I started taking only 2 grams and waited a few hours to make sure I didn't get any side effects from it. I then went up to 8 grams, then 10 the next day, now I'm taking 15 grams a day in 3 divided doses.

Just make sure to take it on an empty stomach, 2 hours after a meal and at least 30 minutes before a meal. Because it competes with other amino acids in food for absorption. It's bitter but I just wash it down with some juice.

I have noticed that the higher the dose I take and the longer I take it, the better I feel.

2 of the 3 amino acids in BCAA's get converted directly into acetyl-coenzme A (Acetyl-coA) and therefore bypass the possible inhibited pyruvate dehydrogenase enzyme and feed the krebs cycle directly.

This gives the electron transport chain in the mitochondria more substrates to make more ATP and ATP is energy.

I think that's probably why BCAA's work so well for many with ME/CFS.

Notice in the pink box below, lle* and Leu* stands for Isoleucine and leucine.

Which are 2 of the 3 amino acids in BCAA's and they feed the krebs cycle directly, by creating Acetyl-CoA, AFTER the PDH (pyruvate dehydrogenase enzyme) in the green box. Which is probably inhibited in ME/CFS.

LINK

ALA helps PDH to function better by inhibiting pyruvate kinases. Coq10 is one of the 2 major substrates that feed the electron transport chain. Which is where most of the bodies energy is created.

 

[mariovitali]

Very interesting. I wonder if the intolerance that I and so many others with ME/CFS have to nutritional supplements is, in fact, not a sign of an over-reactive immune system, but instead an inability of the liver to process these substances. Acne, fatigue, brain fog, and muscle aches all get worse when I take a new supplement. And if I have a drink of alcohol, the acne goes into over-drive. And I feel worse 2-3 hours after meals. All of these would point to liver injury, I would think.

So I guess my question would then be, if the metabolic trap theory proves correct, will that paradigm align with liver injury being central to the problem so many of us are facing?

This is what I think happens for a significant number of ME/CFS patients. You can check all viruses that are mentioned as ME/CFS triggers, they all can affect liver function in a negative way. The same holds for some medications since these are being metabolised by the liver and while doing so, oxidative stress takes place. This in turn may affect bile acid metabolism. Bile acids have immunosuppressive action which I believe is interesting to note and have a role in regulating gut microbiome.

We may be in need of good hepatologists apart from immunologists.

 

[MonkeyMan]

This is what I think happens for a significant number of ME/CFS patients. You can check all viruses that are mentioned as ME/CFS triggers, they all can affect liver function in a negative way. The same holds for some medications since these are being metabolised by the liver and while doing so, oxidative stress takes place. This in turn may affect bile acid metabolism. Bile acids have immunosuppressive action which I believe is interesting to note and have a role in regulating gut microbiome.

We may be in need of good hepatologists apart from immunologists.

Very interesting and helpful, thank you.

 

[raghav]

Just a word of caution. Leucine causes release of insulin.

Another way that leucine acts as a potent anabolic agent is by spiking insulin levels. Like high-glycemic carbs, leucine increases the release of insulin from the pancreas, which helps to drive the amino into muscle cells where it can work to stimulate muscle growth.

I have diabetes. So when I took BCAA for the first time along with my insulin injection I felt sudden hunger and palpitation. I immediately checked my sugar level and it had dropped to 65. So just keep an eye on your sugar levels if you are going to use BCAA.

 

[Wolfcub]

This is what I think happens for a significant number of ME/CFS patients. You can check all viruses that are mentioned as ME/CFS triggers, they all can affect liver function in a negative way. The same holds for some medications since these are being metabolised by the liver and while doing so, oxidative stress takes place. This in turn may affect bile acid metabolism. Bile acids have immunosuppressive action which I believe is interesting to note and have a role in regulating gut microbiome.

We may be in need of good hepatologists apart from immunologists.

I wonder if Milk Thistle would help that?

I had blood tests to look at liver function and the results were fine and normal. But I have bought some Milk Thistle tablets just now and am going to try them.

 

[enduin]

One word of advise about Milk Thistle: I tried many Milk Thistle extracts and supplements in the past and never noticed any effect. Then I bought organic Milk Thistle seeds, ground them in a coffee grinder and started taking a spoonful a day. After a few days I noticed that I could have a beer without the usual headache I now get from alcohol. In my experience taking freshly ground Milk Thistle seeds seems to have a much better effect than any other Milk Thistle extract or supplement.

 

[aquariusgirl]

https://www.sciencedirect.com/science/article/pii/S1550413109000400

 

[Learner1]

https://www.sciencedirect.com/science/article/pii/S1550413109000400

Interesting. However, a fair number of the subjects were on cholesterol meds and BP meds. Of note also, they were all eating 14-15% of calories from protein and 43-50% of calories from carbs.

How would we extrapolate the results of this study to us? I'm confused...

I seem to be burning aminos, aa found in the Fluge and Mella study, and eat 25% of calories from protein to keep my amino levels normal, with additional BCAAs being effective (along with glutathione) at pulling me out of PEM. I eat about 20-25% of calories as carbs. Fasting glucose is 85, which has dropped as my EBV and other infections are treated.

Seems that there are more variables in this equation?? BCAAs can be an effective tool for PEM for some of us, without experiencing insulin resistance.

 

[ljimbo423]

Seems that there are more variables in this equation?? BCAAs can be an effective tool for PEM for some of us, without experiencing insulin resistance.

I agree that there are probably more variables to BCAA's and insulin resistance, at least in ME/CFS.

I've been taking 10-15 gms a day of BCAA for about a month. Even though I'm walking about a 1/2 mile 2-3 times a week and doing 4-6 hours a day of other physical activity.

I have had only very minor, occasional PEM and not one flare! Not having any flares is a huge deal. I was getting them a couple a times a month before the BCAA's. Like I said, not one since I started them a month ago now.