• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Carnivore Diet for ME?

Status
Not open for further replies.

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest

Please look into the metabolomics research in amino acid deficiencies in ME/CFS as well as the issues with oxidative and nitrosative stress, peroxynitrites, membrane damage and abnormal sphingolipids.

Additionally, many patients here have been on antibiotics which kill off all the oxalobacter formigenes and other oxalate degrading bacteria in their gut, thus developing an oxalate problem which can lead to mitochondrial damage, increased oxidative stress, and fibromyalgia symptoms. making ANY plant based protein a problem.
 
Last edited by a moderator:

leokitten

Senior Member
Messages
1,595
Location
U.S.
The TMAO study was done a a small handful of vegans. The gut microbiome has as much to do with TMAO production as diet.

This is a site for ME/CFS patients. Not biohackers, longevity gurus or cancer researchers. A lot of the advice you're proffering I'd not in line with what the researchers have been finding in regard to the metabolomics of ME/CFS or for patients with mitochondrial issues. Perhaps you could just as cleverly pay some attention to this research and then comment on dietary recommendations.

@Learner1 if you go back to where I joined this conversation I was simply making the point that buyer beware, while one might get short-term benefits from carnivore, keto, or paleo for their ME symptoms (based on some extrapolation of metabolomics research) they might be trading this for a much higher risk of long-term problems, such as heart disease, kidney or liver disease, stroke, cancer (high meat diets), etc. Nothing more.

I’ve read all the main ME metabolomics papers that came out, and I did trial the ketogenic diet for well over a year. It gave me amazing results at first, but they slowly didn’t last and it’s a very difficult protocol to follow long-term to achieve the level of therapeutic ketosis required to keep significant improvements (at least in my case). In addition, my LDL and total cholesterol shot up and stayed up the entire time I ate keto, even though I was only doing “healthy” fats. I have fairly low cholesterol and LDL otherwise. So I want people to know that they should beware of diets like keto and carnivore, and maybe to a lesser extent paleo, though in general it seems like a lot of paleo people are also high meat.

I’m not doubting some diet will help ME symptoms, it was just chiming in to point out it could be a double edged sword and in a few years you could get some other horrible disease from these diets, on top of dealing with ME.

EDIT: I failed to mention that pwME will have to do these extreme diets forever, when we have no research as to their long-term detrimental effects, unlike healthy people who can take long breaks whenever they want to, and for this reason it’s even more important for pwME to beware of long-term consequences for short-term gains.
 
Last edited:

belize44

Senior Member
Messages
1,664
Those of you having success with the Carnivore diet, could you tell me if you were able to go off medications, or if your medications did or did not interfere with your results? (I hope that made sense, lol.)
 

leokitten

Senior Member
Messages
1,595
Location
U.S.
The TMAO study was done a a small handful of vegans. The gut microbiome has as much to do with TMAO production as diet.

That’s just one specific paper I listed, but separate from that, there’s plenty of research on the nasty effects of TMAO.

Consumption of animal products like meat, fish, poultry, eggs (all things high in choline and red meat high in L-carntine) has been shown alter your gut microbiome to have more TMA-producing bacteria populations that feed on the choline and L-carnitine and pump out TMA, and the higher the consumption of animal products above the more and more bacteria and TMA.

And the TMA metabolite makes it into your bloodstream and converts to TMAO where it is a serious risk for CVD, stroke, heart attack, heart failure, and chronic kidney disease.

So if you are eating carnivore or high meat paleo, this is one of the risks you are taking, in addition to all the saturated fats coming with them that for sure promote heart disease.

Study links frequent red meat consumption to high levels of chemical associated with heart disease

Red meat, TMAO, and your heart

Gut flora metabolism of phosphatidylcholine promotes cardiovascular disease

Intestinal microbiota metabolism of L-carnitine, a nutrient in red meat, promotes atherosclerosis

Gut Microbial Metabolite TMAO Enhances Platelet Hyperreactivity and Thrombosis Risk

Gut Microbe-Generated Trimethylamine N-Oxide From Dietary Choline Is Prothrombotic in Subjects
 
Last edited:

leokitten

Senior Member
Messages
1,595
Location
U.S.
Some additional info from Hungary on the Paleo Ketogenic Carnivore diet (80% meat)

Abstract
Paleolithic ketogenic diet (PKD): A diet covering and limited to our physiological needs We have developed the PKD in 2010-2011. Previously we have been using the paleolithic diet which proved to be ineffective in the vast majority of chronic conditions. We believe that the PKD is the only evolutionary adapted diet for humans. Rehabilitation of chronic diseases is most effective when the diet is limited to our real physiological needs. Eating fruits and vegetables does not form part of our physiological need but are associated with risks. Plant foods can only be regarded as "relatively" safe and only when certain plant food items are consumed and only in limited amounts. The diet was derived from clinical evidence and was not primarily influenced by archeological or ethnographic evidence, given that the application of the diet is clinical too. Altogether clinical experience was derived from about 4000 patients. Characterizaton of the PKD • 70-100% animal based food, 0-30% plant based foods (in volume) "Diet exactly confined to our needs" "Physiologically still tolerable diet"

Therapeutic protocol of Paleomedicina Hungary (PDF Download Available). Available from: https://www.researchgate.net/publication/323151200_Therapeutic_protocol_of_Paleomedicina_Hungary [accessed Apr 10 2018].

You will NEVER be in ketosis eating that much protein. The point of the ketogenic diet is that you only eat adequate protein for your gender, size, and age. If you eat more, your liver will use all the extra protein and covert it via gluconeogenesis to glucose in the blood and bam you are out of ketosis.

Frankly I don’t know how someone could push a Paleo Ketogenic Carnivore diet and believe that would ever work. You cannot combine carnivore with keto ever, it just doesn’t work.
 

leokitten

Senior Member
Messages
1,595
Location
U.S.
This is a guy who explains that humans are carnivores by looking at the digestive system. However, he does not tell people to just eat beef and water and has some fiber and other things I think.

I believe he got it from Barry Groves:

This is wrong. Human digestive tracts are much longer than carnivores of comparable size. And the much longer digestive tract is direct evidence that humans evolved to eat plants and fiber (because they need a much longer tract to digest properly). So our digestive tracts look like omnivores.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
@Leikitten It's more than about fat. Cholesterol is needed for proper hormone production, something that many pwME have issues with. Cholesterol is just a truck that transports nutrients around, not the bogeyman. Ancel Keys fed saturated fats to rabbits, who ARE vegetarians and decided cholesterol was bad. Lipids are needed to help make healthy membranes. At my sickest, my cholesterol was 145, now it's 168, on a higher fat diet. My body needs it.

You have also completely ignored the issue with oxalates, which is a very serious problem - many, many pwME have but may not be aware of, and how oxalates make eating any plant protein a problem. And the need pwME have for amino acids. And the issue of peroxynitrites damaging membranes in ME/CFS.
I failed to mention that pwME will have to do these extreme diets forever
This is untrue. There is absolutely no research that says this.
 

leokitten

Senior Member
Messages
1,595
Location
U.S.
This is untrue. There is absolutely no research that says this.

Anecdotal evidence. Every single person that I’ve spoken to or read about with ME who did or is doing the keto diet long-term, myself included having done it more than 1 1/2 years, will tell you it’s not a disease modifying treatment. You know and feel it’s not disease modifying in any way, but rather a symptomatic treatment. The reason you know this is because if you take any break from the diet or happen to be in lower ketosis for a while your improvements wane and your ME symptom severity starts coming back.

How long more than 1 1/2 years would one have to do the diet to have it be disease modifying? I don’t think you have any evidence that it isn’t forever or effectively forever (20-30 years).
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
The keto diet is not a cure for ME/CFS. It is not a substitute to delving into and addressing immune system issues, neurological issues, endocrine system issues, specific nutrient deficiencies or imbalances.

I did a ketogenic for about 8 months, but we found that I needed too much protein to be able to stay in ketosis, about 1.8 grams per kilogram per day. But, now that I've improved, I am able to reduce the amount of protein to about 1.4 grams per kilogram per day.

So, my needs have changed over time as my overall health has. I have found a low oxalate Paleo diet to be quite maintainable - it's a whole food diet, is nutrient dense, has a good macro balance for me, 50 to 55% fat, 20 to 25% carbs, and 25 to 30% protein. I don't think it's a fad diet, and I can see doing it for a long time. I did figure out, through testing, that I had an oxalate problem due to the antibiotics I had been on for two of the chronic pneumoni infections that I had had, so added the low oxalate piece to the Paleo diet I had already been on for 7 years aside from the time on keto.

Carnivore is a radical diet, and it does not have several necessary nutrients, particularly for patients who are ill with a disease that typically has a lot of oxidative stress and who are depleted in folate and have disturbed microbiomes anyway. Keto can be helpful for brain function, however I didn't find that my brain function was that improved on it.

With all this said, there are no studies on diet for long periods of time on any of the subgroups of ME/CFS patients.
 

leokitten

Senior Member
Messages
1,595
Location
U.S.
@Learner1 I responded to your comment explaining the fairly strong anecdotal evidence that one would have to do these types of diets for forever to maintain the ME symptom benefits (because they aren’t disease modifying nor curative) but then in your last post you are confirming and in agreement?

Maybe I am misunderstanding and you believe over time with your specific diet over many years in your n=1 case you might not have to follow it eventually, but I believe you have even less evidence that that will be the case compared to the majority of pwME who’ve trialed these diets for a long time and will tell you once they stop things eventually revert.

I don’t believe any of these diets will permanently heal ME, and if they do it will take so many years and only work for a few.
 

leokitten

Senior Member
Messages
1,595
Location
U.S.
@Learner1 may I ask you a personal question, are you working a job again since your improvements on your diet? Is the job mentally (or physically) exerting? Can you go on vacations, take plane trips, and deal with airports without it being a living hell? Can you do physical exercise?

Because trust me, once you start at this new level of hugely exerting aspects of life again, where you cannot rest or pace nearly as much anymore and have to really push through the pain, you will see how little these diets help at that stage. It could be your improvements from your diet are working because you’ve been able to control your exertion and no change it, but once you start ramping up exertion on a daily of mostly daily basis you will see the limits, at least that’s what I’ve seen in my life with ME and diets.
 
Last edited:

Frunobulax

Senior Member
Messages
142
Those of you having success with the Carnivore diet, could you tell me if you were able to go off medications, or if your medications did or did not interfere with your results? (I hope that made sense, lol.)

As I said I don't do Carnivore, but do consume vegetables and salad. But I'd estimate my calories come 70%-80% from animal sources (meat/eggs/butter/dairy) and 20% from vegetables. I do have to stay away from lectins (peanuts, nightshades, cacao) and oxalates (almonds, spinach).

What changed for me, after almost 2 years on low carb/keto?
  • Much more energy, I'm able to work part time now (4h a day home office job) instead of being nearly bedridden
  • Blood pressure normalized (I was borderline high)
  • heartburn disappeared, I quit PPIs that I was taking for 8 years (pantoprazole 20mg a day)
  • Suspected psoriasis disappeared, no more skin issues
  • restless legs finally under control, despite reduced medication (from 30mg Oxycodone to 20mg a day)
  • triglycerides normalized (were once over 400, now below 150)
  • HbA1c down to 5.0 (from 5.7)
  • HDL up to 60 or so (from 35)
  • weight normalized, still falling slowly (from 240 to 210 pounds, at 5 foot 11)
  • sleep is much better, sleep apnea is gone, no more snoring
  • probably some minor things that I don't remember right now.
No negative effects whatsoever. LDL went up a bit, which is normal considering that LDL is a fat transporter.

(Footnote: It's amazing how many people say LDL is bad if they have no clue what it actually does. It does move fatty acids from place to place, but it has dozens other functions, for example as part of the immune system. Reducing LDL is a very bad idea in general, and statins have horrible long-term side effects.
However, there is one "bad" cholesterol: Small dense and oxidized LDL, which is part of the total LDL. Google for LDL subfractions if you want to know more. If your LDL goes up, you don't know if it's the "good" normal LDL or the "bad" small dense/oxidized LDL. But we do know from studies that going keto/carnivore will actually reduce oxidized LDL, so that's good. Paul Mason has excellent talks on this on youtube.)
 
Last edited:

Frunobulax

Senior Member
Messages
142
@Learner1 I responded to your comment explaining the fairly strong anecdotal evidence that one would have to do these types of diets for forever to maintain the ME symptom benefits (because they aren’t disease modifying nor curative) but then in your last post you are confirming and in agreement?

First, there is no proof that it's a bad thing to stay on keto forever. There is,"fairly strong anecdotal evidence" from many people that have been on keto for ~10 years and are very, very healthy. But I agree that the evolutionary normal is to eat some carbs (about 20% from unrefined sources like rice, fruit or potatos), so this is actually my personal target. But whether this is advisable depends on what you believe why we see improvement with keto.

There is one theory that ME/CFS usually includes an inhibited pyruvate dehydrogenase (PDH), that is, we can't generate energy from glucose effectively. All carbs contribute to our symptoms. If this is true, you will have to stay on keto forever, obviously, until someone figures out how to fix the PDH.

There is another theory that systemic inflammation is promoted by high insulin, or insulin resistance that comes from a high carb diet. Improvements are due to lower inflammation and reduced oxidative stress. Insulin resistance can be approximated by HOMA-IR or fasting insulin for non-diabetics (even though these values change a lot depending on sleep, stress etc. so you'll have to measure them several times to be sure). We know that insulin resistance often normalizes on keto (and inflammation goes down), even though it takes years. If this is true, then one would be able to add some carbs after a few years when insulin has gone down sufficiently. For me, fasting insulin is almost down to normal after 2 years (HOMA-IR of 1.3, where <1 is considered healthy).

@Learner1 may I ask you a personal question, are you working a job again since your improvements on your diet? Is the job mentally (or physically) exerting? Can you go on vacations, take plane trips, and deal with airports without it being a living hell? Can you do physical exercise?

Because trust me, once you start with any of these hugely exerting aspects of life again, where you cannot rest or pace nearly as much anymore and have to really push through the pain, you will see how little these diets help at that stage.

Well, I was nearly bedridden for over a year, and got progressively worse. Constant brain fog, felt terrible all the time. I saw improvement the moment I went to keto. Now I'm feeling fairly well if I pace myself, I can work again, I can read books, can take walks, I'm even writing a book. It's no cure, no, but it's a major improvement.
 
Last edited by a moderator:

Frunobulax

Senior Member
Messages
142
Congratulations on your improvement @Frunobulax :thumbsup:. Do you think there was one change brought about by your diet that made the most difference? Or would it be a combination of things? This looks interesting to me..

Difficult to say. I didn't go to keto right away, I went to low carb first (about 20% calories from carbs) in Dec 2018. This already improved energy levels and blood pressure. Later I took on keto (April 2019), and weight started to drop. (I do suspect that my lipid cells store a lot of toxins, in fact I have to lose weight slowly or I'll feel horrible.) But the breakthrough in PPIs/heartburn and skin issues came only after I eliminated lectins and reduced oxalates, July 2019. So I did several gradual steps, and saw improvements with every step. My energy levels continued to improve slowly for several months after the last change (until the end of 2019), but I'd say energy been fairly stable for a year now.

Blood values are still improving slowly (triglycerides falling and HDL rising), which apparently is normal. Many people say blood values will stabilize when weight stabilizes, so I guess I have another 30 pounds to lose before that happens. Also sleep apnea and snoring went away after I started to consume flaxseed oil on a regular basis. Wasn't exactly planned, but I do monitor my sleep (using an old smartphone and an app that analyzes snoring), and when I started to take about 30ml flaxseed oil a day for different reasons (wanted to go high omega 3), suddenly my snoring went from 30% of the sleep duration to 0%-3%, within 2-3 days. Weird. For the last month, I snored on average less than 2% of my sleep duration. (The effect is obvious and reproducible. If I don't consume any flaxseed oil for more than 3 days or so I'll gradually start to snore again.) But apparently sleep apnea was fixed before that, when I still snored a lot, according to a sleep lab test.

Of course I remember only the successful changes :) Earlier I tried a variety of things that didn't help at all. In the last few years before low carb I tried gluten free, vegan, low FODMAP and several other diets, without success. I also went carnivore for 2 months (earlier this year) and had some trouble, but I suspect I didn't eat enough fat at the time and too much protein. I plan to make another attempt at carnivore soon.

To elaborate further, my working theory is that my lipid cells store a lot of toxins (possibly from my youth, where I grew up in an area with chemistry factories all around my home city) and unhealthy fats (omega-6 linoleic acid). This would explain why I feel completely exhausted whenever I lose weight quickly (for example when I try to fast several days), and gives me some hope that I'll improve further as I'm slowly losing weight. So my plan is to keep losing weight at a slow rate (maybe 2 pounds a month), and see what happens in a year or two.
 
Last edited:

leokitten

Senior Member
Messages
1,595
Location
U.S.
Large ARIC cohort study of over 15,000 adults in US followed over 25 years

Dietary carbohydrate intake and mortality: a prospective cohort study and meta-analysis. Seidelmann, et al. Lancet Public Health (2018)

Figure 1. U-shaped association between percentage of energy from carbohydrate and all-cause mortality in the ARIC cohort

44637A78-7784-4045-A527-7899E88A562A.jpeg
 

belize44

Senior Member
Messages
1,664
Difficult to say. I didn't go to keto right away, I went to low carb first (about 20% calories from carbs) in Dec 2018. This already improved energy levels and blood pressure. Later I took on keto (April 2019), and weight started to drop. (I do suspect that my lipid cells store a lot of toxins, in fact I have to lose weight slowly or I'll feel horrible.) But the breakthrough in PPIs/heartburn and skin issues came only after I eliminated lectins and reduced oxalates, July 2019. So I did several gradual steps, and saw improvements with every step. My energy levels continued to improve slowly for several months after the last change (until the end of 2019), but I'd say energy been fairly stable for a year now.

Blood values are still improving slowly (triglycerides falling and HDL rising), which apparently is normal. Many people say blood values will stabilize when weight stabilizes, so I guess I have another 30 pounds to lose before that happens. Also sleep apnea and snoring went away after I started to consume flaxseed oil on a regular basis. Wasn't exactly planned, but I do monitor my sleep (using an old smartphone and an app that analyzes snoring), and when I started to take about 30ml flaxseed oil a day for different reasons (wanted to go high omega 3), suddenly my snoring went from 30% of the sleep duration to 0%-3%, within 2-3 days. Weird. For the last month, I snored on average less than 2% of my sleep duration. (The effect is obvious and reproducible. If I don't consume any flaxseed oil for more than 3 days or so I'll gradually start to snore again.) But apparently sleep apnea was fixed before that, when I still snored a lot, according to a sleep lab test.

Of course I remember only the successful changes :) Earlier I tried a variety of things that didn't help at all. In the last few years before low carb I tried gluten free, vegan, low FODMAP and several other diets, without success. I also went carnivore for 2 months (earlier this year) and had some trouble, but I suspect I didn't eat enough fat at the time and too much protein. I plan to make another attempt at carnivore soon.

To elaborate further, my working theory is that my lipid cells store a lot of toxins (possibly from my youth, where I grew up in an area with chemistry factories all around my home city) and unhealthy fats (omega-6 linoleic acid). This would explain why I feel completely exhausted whenever I lose weight quickly (for example when I try to fast several days), and gives me some hope that I'll improve further as I'm slowly losing weight. So my plan is to keep losing weight at a slow rate (maybe 2 pounds a month), and see what happens in a year or two.
I see some similarities in your experience with mine; namely the growing up in an industrial area which may have caused the storage of toxins in the fat cells. I do tend to get ill if I lose weight rapidly, and this may be why. Rapid weight loss is usually not good, unless the person experiencing is not feeling too many ill effects.
 

leokitten

Senior Member
Messages
1,595
Location
U.S.
There was another presentation at the American College of Cardiology annual meeting last year on a large cohort of 14,000 adults in China followed over 20 years.

They also found a U-shaped relationship between percent carbohydrate intake and development of atrial fibrillation, in particular low carb dieters had the highest risk of getting AFib, a serious heart rhythm disorder which can also lead to stroke and heart failure.

Low-Carb Diet Tied to Common Heart Rhythm Disorder
 
Status
Not open for further replies.