Insights into ME/CFS phenotypes through comprehensive metabolomics (Lipkin, Hornig)

percyval577

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Because doctors need naturally to judge:
"This is a case of textbookknowledge xy." or "This is a case of guidline yz."

This differs not from: "This is a case of an apple."
And as well as any car mechanic who would try to find out how a completly new motor worked would be (in fact) a scientist, so would a docotor who would try to find out something, possibly with new terms.

I think they are obligated to think on their own if something pops up ("luckily this never happens" they might think, and some are obviously the monarchs of the universe anyway), but quak can pop up easily as well - dangerous.

(Though congratulations to your doctor who came up with the iv, but i guess it has worked typically limited, am I right?)


PS: The main difference between science and all days thinking is only that we are since Platon aware of the difference of "cases of" and the general "case" (preventing confusions and forcing to do it properly) -
 

Learner1

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Because doctors need naturally to judge:
"This is a case of textbookknowledge xy." or "This is a case of guidline yz."
Humans are extremely complex systems with trillions of living parts and thousands of biochemicals. The more I've learned about medicine the less I think the size of modern medical knowledge is in comparison to what is needed to have a full working knowledge for the maintenance of all these moving parts.
This differs not from: "This is a case of an apple."
And as well as any car mechanic who would try to find out how a completly new motor worked would be (in fact) a scientist, so would a docotor who would try to find out something, possibly with new terms.
The equivalence to a doctor who knows how to saddle and bridle a horse, clean mud out of hooves, and change shoes when faced with caring for a Tesla or a Ferrari?

The doctors I work with are welcoming all the new research, piecing it together, and making educated guesses on treatment. And, for a multifaceted complex disease with no real treatment guidelines, no drugs, and no cure, this is the best any patient can expect.

I think they are obligated to think on their own if something pops up ("luckily this never happens" they might think, and some are obviously the monarchs of the universe anyway), but quak can pop up easily as well - dangerous.
That is why it pays to be an educated patient, and ask questions, and refuse treatments that seem too outlandish.
(Though congratulations to your doctor who came up with the iv, but i guess it has worked typically limited, am I right?)
He didn't. Garth Nicolson has done a lot of research on lipid replenishment, and Patricia Kane founded Body Bio on PC replacement - she uses a European IV PC product, Essentiale.
 

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percyval577

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The equivalence to a doctor who knows how to saddle and bridle a horse, clean mud out of hooves, and change shoes when faced with caring for a Tesla or a Ferrari?

The doctors I work with are welcoming all the new research, piecing it together, and making educated guesses on treatment. And, for a multifaceted complex disease with no real treatment guidelines, no drugs, and no cure, this is the best any patient can expect.
Yes, piercing it together in this case of Mr Miller or whoever. And this is a task not easy to do!

But it´s not making up a theory, meaning a generel judgement. They might be aware that even bilogical theories can be wrong (but the most are not able to, thats how I recall my experiences with doctors).

And a not generel judgement for example is: "This here and now is an apple." or: "This here and now is a flu."
 
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Learner1

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I have been in that situation. The best I know how to do things is:
  1. Do my research in advance, and collect my ideas and questions, along with the pertinent research papers.
  2. Draft a document to hand to the doctor, so I get help, even if I sleep my way through the appointment. It has 3 sections:
    • Update and Current Symptoms - includes visits to other doctors, changes in meds & supplements, symptoms
    • Concerns - major concerns I have (based on research I've read, patterns I've noticed, or things I've learned from other patients)
    • Questions - specific questions I want this doctor to answer (why he's doing something, whether I could try something, questions about dosage, timeline, etc.)
  3. Hand it to the doctor (or better yet, the nurse) as soon as possible in the visit
This strategy has been helpful, even with more conventional doctors. Makes me look thoughtful, educated, logical, and unemotional, and I get more of the doctor's time, and better and answers. I present the research, as needed, as we discuss what I've written.
 
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I've been in the same boat...we kept solving these amino acid problems til my doctor ordered 40g a day of a custom amino powder.


These are things that my doctors have been looking at. I think these may be a part of the puzzle, but not sure they'll solve the various immune issues.

Wonder how Mestinon figures in here? What are you using to support acetyl CoA? Pantethine, BCAAs? And are you using oral or IV phosphatidyl choline, NT Factor, or??
Acetyl CoA and acetylcholine support are Citicoline, pantothenic acid (or pantethine, both seem to work), thiamine, acetyl-l-carnitine, manganese, cysteine and lysine. I also take lecithin and Mega PC triple-strength lecithin and just started NT Factor EnergyLipids Powder a couple weeks ago.

When I first started taking lysine, it alleviated low ACh symptoms by itself, but only for a couple days. There doesn't necessarily seem to be a more is better effect with higher doses of cholines, but I'm taking a lot experimentally to replete any cell membranes that may have been damaged, which seems like it would take a few months at minimum. I feel the lecithins and phospholipids are a low-risk supplement. Acetyl-l-carnitine and thiamine can sometimes alleviate my low ACh by themselves.

I was an athlete playing a lot of roller derby (and all of the cross-training that goes with it) when I became ill and had heavy BCAA use when I got sick, so I don't use a lot of it anymore, but I do take an essential amino acid blend every day and have had a positive response to almost all amino acids that I've trialed separately.

I was taking a lot of vitamin B6 because I seemed to have frequent proteinuria, but now that I'm taking methionine, cysteine, lysine and essential amino acids, I rarely develop proteinuria. So this makes me suspect that vitamin B6 was working overtime and becoming depleted trying to compensate for missing aminos (or burning them as fuel since they are unusable without their compadres).

It's hard to elaborate much without feeling like I'm writing a book, but eating 2 bowls of sauerkraut per day also makes me feel better (much better than probiotic pills do), and I only recently discovered that sauerkraut has lactylcholine and acetylcholine in it.

I haven't had immune issues or PEM for the last few years. I definitely had them for the 1st few years. I think they may have gone away because of the care that I put into trying to stabilize and normalize my iron metabolism. And that's where we get to what I think is the reason that doctors are unlikely to figure things out for most patients. The web of human metabolism is too complicated and no one recognizes many nutrient deficiencies any more because they are not considered much of a threat anymore. So no doctor was going to tell me that my recurring mono was from low lysine or that my low iron and low calcium symptoms were from low lysine or that I had low ACh levels (at least not until it gets bad enough to resemble myasthenia gravis).

I think that's enough of a book for now. I don't like to feel like I'm junking up threads with too much personal experience that may or may not be pertinent. Right now, I'm going to continue on with ACh support and phospholipid and amino acid replacement, and I'll have to see where I am in a couple months. I have a lot of low vitamin A symptoms, so no doubt being deficient in such a potent and important vitamin is affecting my health, but I'll be unable to replete vitamin A until I have done the work on my acetylcholine. Vitamin A increases acetylcholine production way too fast, and my body can't keep up, so I feel really great for a day or two and then I end up very depleted in ACh. Vitamin A is about the only nutrient that causes me to crash right now.
 
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And maybe I should add that when I say "nutrient deficiencies," I'm not just talking about the ones from poor intake, but also the ones altered by disease. For example, I'm really surprised there isn't more talk on this forum of anemia of chronic disease or the fact that inflammation can also impair zinc metabolism. I think I could probably write a short manifesto on the importance of iron in human metabolism.
 

percyval577

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@Learner1, your points might be often very easily helpful.

But because I couldn´t effort both, I took the risk to provoke to be three month without income when I preferred to grasped and gather medical facts over thinking how to deal with obviously stupid doctors.

One doctor especially helped me then ... and after guessing around profoundly: "This now is a strange case of false illness believe." I had given to the doctor good research, short and nice, that points to my health. If I am remembering right they are obligated to neglect any guidlines and frozen knowledges if new evidences appear.

At the end now I have some bloody evidence to show that my brain works far from normality (or better known illness) -
One must also say that research like pace is crime due to the responsibilty for living things.
 

Learner1

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One must also say that research like pace is crime due to the responsibilty for living things.
I find it helpful to have problems that have other ICD10 codes than G93.3 or R53.82, as those don't get us very far... and, I fully believe that every single one of us can find ICD10 codes that apply to us, which may lead to further diagnostics and trying treatments that might help.

If the doctors are too busy to spend much time, it's helpful if we can give them a nudge in a direction that helps. ;) (One can research ICD10 codes that one honestly thinks applies, then report the symptoms and labs that fit...) :whistle:

It beats having a diagnosis that only qualifies for CBT and GET...:bang-head:
 

Learner1

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Acetyl CoA and acetylcholine support are Citicoline, pantothenic acid (or pantethine, both seem to work), thiamine, acetyl-l-carnitine, manganese, cysteine and lysine. I also take lecithin and Mega PC triple-strength lecithin and just started NT Factor EnergyLipids Powder a couple weeks ago.
We are on very similar programs. I've been on NT Factor for over a year and wrote to Dr. Nicolson recently about my situation abd he suggested tripling the standard dose of NT Factor. At the same time, my doctor started the PC IVs, so I'm hoping to finally get ahead of the curve.

I only get carnitine by IV as my dictor eas concerned about TMAO - my gut bacyeria seemed to be making it. Not sure if I can get acetyl-l-carnitine by IV though.
When I first started taking lysine, it alleviated low ACh symptoms by itself, but only for a couple days. There doesn't necessarily seem to be a more is better effect with higher doses of cholines, but I'm taking a lot experimentally to replete any cell membranes that may have been damaged, which seems like it would take a few months at minimum. I feel the lecithins and phospholipids are a low-risk supplement.
Agreed. I wish Lipkin at al. would talk to Nicolson and Kane...instead of us out here in the weeds experimenting...
Acetyl-l-carnitine and thiamine can sometimes alleviate my low ACh by themselves.
How do you know that?

I'm taking 500mg benfotiamine daily plus high potency B complex and quite a lot of carnitine. And the Mestinon. (Does it playy a role here?)
I was an athlete playing a lot of roller derby (and all of the cross-training that goes with it) when I became ill and had heavy BCAA use when I got sick, so I don't use a lot of it anymore, but I do take an essential amino acid blend every day and have had a positive response to almost all amino acids that I've trialed separately.
I've consistently tested low in leucine and isoleucine and taking 5-6g of BCAAs helps to stave off PEM after exertion. But I've also had symptoms and tested low in tyrosine, lysine, glycine, glutamine, cysteine, citrulline, ornithine, etc. The pattern serms to match Fluge snd Mella's findings for women, and my doctors think im burning aminos for fuel. A custom amino blend has been helpful.
I was taking a lot of vitamin B6 because I seemed to have frequent proteinuria, but now that I'm taking methionine, cysteine, lysine and essential amino acids, I rarely develop proteinuria. So this makes me suspect that vitamin B6 was working overtime and becoming depleted trying to compensate for missing aminos (or burning them as fuel since they are unusable without their compadres)
I use a lot of B6, too. Had to go up to 350mg before I wasn't deficient. It's used in me me production and methylation, but also sphingolipid production, which I suspect is significant.
It's hard to elaborate much without feeling like I'm writing a book, but eating 2 bowls of sauerkraut per day also makes me feel better (much better than probiotic pills do), and I only recently discovered that sauerkraut has lactylcholine and acetylcholine in it.
Nice tip!
I haven't had immune issues or PEM for the last few years. I definitely had them for the 1st few years. I think they may have gone away because of the care that I put into trying to stabilize and normalize my iron metabolism. And that's where we get to what I think is the reason that doctors are unlikely to figure things out for most patients. The web of human metabolism is too complicated and no one recognizes many nutrient deficiencies any more because they are not considered much of a threat anymore. So no doctor was going to tell me that my recurring mono was from low lysine or that my low iron and low calcium symptoms were from low lysine or that I had low ACh levels (at least not until it gets bad enough to resemble myasthenia gravis).
We are all individuals and while these studies are nice, adjusting the variables to the individual is important. I have heriditary hemochromatosis, so rather than a low iron problem, too much iron has likely been a damaging factor for my mitochondria.
I think that's enough of a book for now. I don't like to feel like I'm junking up threads with too much personal experience that may or may not be pertinent.
I appreciate your sharing - it's helpful to see someone else out there working with the same variables and getting some results as I have. The studies are great, but we need treatments, so on this one I was left with wondering what treatment plan could be developed based on their findings. I think, as we've been finding, there are treatments that can be put together now.

I'm finding the idea of waiting for the magic pill or discussions of a single supplement lacking. But, fixing the fundamentals, like membranes, makes more sense to me.
Right now, I'm going to continue on with ACh support and phospholipid and amino acid replacement, and I'll have to see where I am in a couple months.
I'd love to hear your experience then...
I have a lot of low vitamin A symptoms, so no doubt being deficient in such a potent and important vitamin is affecting my health, but I'll be unable to replete vitamin A until I have done the work on my acetylcholine. Vitamin A increases acetylcholine production way too fast, and my body can't keep up, so I feel really great for a day or two and then I end up very depleted in ACh. Vitamin A is about the only nutrient that causes me to crash right now.
I'm on 50,000 IUs vitamin A a day. But, I'm also taking high doses of C, E, ALA, and glutathione. My tests have shown very high oxidative stress, and antioxidant deficiencies. This dose of vitamin A seems to be right. Comprehensive nutrient testing every 9 months has been realky helpful in trapping all my issues and helping us adjust doses.

Again, I wish we could get more out of the researchers on a path to correct recommended they see. It'd be nice to have a recognized path (and then get it paid for, so its available to all patients).
 
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And maybe I should add that when I say "nutrient deficiencies," I'm not just talking about the ones from poor intake, but also the ones altered by disease. For example, I'm really surprised there isn't more talk on this forum of anemia of chronic disease or the fact that inflammation can also impair zinc metabolism. I think I could probably write a short manifesto on the importance of iron in human metabolism.
I take iron twice daily. Didn't think much of it - was a just-in-case sort of a tablet. But then I stopped taking it for a few weeks while I was overseas and oh my god the PEM. I went straight back to deep daytime sleeping and acute sore throats. Reminded me of my worst days. Kinda ruined the holiday. Now I'm back on Iron (I take this one) and I got back to my standard very mild situation pretty quickly.
 

Learner1

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One needs the right amount of iron, not too much or too little. My doctor says serum ferritin should be over 60 for mitos to work properly. But as I have iron overload, the advice is to keep it between 60 and 80 and definitely not over 100.
 
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Thanks guys for sharing your experiences. I've tried to experiment myself with several metabolic supplements, but no effect so far. It's been a somewhat shot in the dark, as I have not found any lab in Scandinavia that can test for my personal deviations of amino acids, phospholipid and other metabolic parameters. So I'm curious to hear which US labs did your metabolic tests? Maybe I can ship my blood overseas and do the tests there....

My medical knowledge is somewhat limited, but after reading Naviaux's study I'm eager to test my own possible deviations of the key metabolic parameters their study revealed, and hopefully get some help from that knowledge supplementation wise.
 

Learner1

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Thanks guys for sharing your experiences. I've tried to experiment myself with several metabolic supplements, but no effect so far. It's been a somewhat shot in the dark, as I have not found any lab in Scandinavia that can test for my personal deviations of amino acids, phospholipid and other metabolic parameters. So I'm curious to hear which US labs did your metabolic tests? Maybe I can ship my blood overseas and do the tests there....
You should be able to. Genova Diagnostics NutrEval FMV with amino acids is an excellent comprehensive test. It should be available in Europe, and I have seen test results from UK patients. You can contact them though their US or UK websites.
My medical knowledge is somewhat limited, but after reading Naviaux's study I'm eager to test my own possible deviations of the key metabolic parameters their study revealed, and hopefully get some help from that knowledge supplementation wise.
You definitely should be able to.
 
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You should be able to. Genova Diagnostics NutrEval FMV with amino acids is an excellent comprehensive test. It should be available in Europe, and I have seen test results from UK patients. You can contact them though their US or UK websites.
Thanks for your respons! I will definitely do this test. Although from what I can see it does not test for all the metabolic parameters that deviate according to both the study in the initial post and Naviaux. But does this mean you think it's better to test amino acids with urine and not blood? Cause I see that they do the blood version as well...
 

Learner1

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Well, then you'd want to do the Metabolon test...but the output is do complex that very few could interpret it to act in the voluminous data.

It means that the NutrEval is the most comprehensive test that is widely used by functional medicine doctors to help their patients. I trust the results, which have stood up side by side when we've occasionally had other tests ordered by our doctors testing the same things.