Anti-purinergic therapy restores itaconate/IFNa (Dr. Phair's theory) and Dr. Prusty's proposed abnormalities in ME/CFS

[kushami]

@cfs since 1998 , any combination is possible until there’s research to pin it down – autonomic problems cause chronic low blood volume, chronic low blood volume causes autonomic problems, or both are caused by a third factor.

A couple of studies in OI and in CFS have found something amiss with the functioning of the renin–angiotensin–aldosterone system (RAAS), which regulates blood volume.

We don’t know exactly when the blood volume declines, because blood volume isn’t regularly measured. Also, people tend not to see an autonomic specialist until they have been unwell for some time, so even if the specialist orders a measurement it will be months or years after onset. And then there’s the 10% of people with CFS who don’t have low blood volume.

The decrease in blood volume is fairly small, so it’s unlikely you would notice it. Also, it may not be a matter of suddenly losing it, more that your body no longer tries to top up to 100%.

Until you can get your blood volume measured and find out whether it is low or not (will be more accessible soon), it might be best to avoid diuretics. Even otherwise healthy people report feeling faint and unwell on spironolactone, and they are presumably starting with normal blood volume. And we do know that low blood volume causes transient orthostatic intolerance symptoms (has been studied at NASA). But inducing low blood volume doesn’t cause an orthostatic intolerance syndrome (such as POTS), nor does it make the RAAS malfunction, so there must be more too it.

New techology to quickly and inexpensively measure blood volume:
https://detalo-health.com/

I spent *forever* investigating and treating low blood volume – everyone thought I had it. Turns out I didn’t! Wish I could have been checked with the above gadget on Day One. I lost about 1.5 years to a red herring.

 

[SqueakyPScott]

I meant this one which is maximum quality but they are out of stock:

https://www.laballey.com/products/fdandc-no1-dye-acid-blue-9

You might try probenecid just 1/4 of a 500 mg pill with food and work your way up.

Not at all. Brilliant blue FCF IC50 is just a few nanomolar. You can easily feel the effect with just a few drops of 10 g/100 ml dilution.

I'd do a dilution, but perhaps have it sublingually will get better absorbed.

I'm back on the probenecid but despite looking I cant find bb fcf with a purity greater than 95% that will ship to me.

What are your thoughts on brilliant blue g? I was able to find 100g @98% purity. Would inhibiting p2x7 more or alone potentially be helpful?

 

[Luxintenebrislucet]

Hello Sergio
thanks for all your work, and that you test so many things and risk a worsening.
I am very curioius and i think it would help many sufferers here who are thinking of giving carnivore a try- to know how are you doing, a few years after you started this diet. As far as i can remember you where very enthusiastic with one of the influencers, who posted a video called " we where carnivores" but apparently he is not a carnivore anymore ( ia m not sure). I am severe, i suffer from POTS and Gastroparesis and apparently terrible digestion from fats and i tried it. I had to quit and i read here experiences of members who never got to their baseline after trying keto or carnivore. I already had a too low HDL ( i dont know why, my diet was mediterranean and i was so careful, but maybe because insuline resistance? ) and high LDL. I tested again just my LDL and it got very very high ( a home kit test) . I am afraid i get a heart attack if i keep pushing this diet.
I would be very thankful for an update of your status and if it helped you.
Organs as far as i know contain purines - and i seem to have a hardcore intolerance to purines. I ate a raw liver , grass feed, but the day after i felt sick.

 

[serg1942]

Hello Sergio
thanks for all your work, and that you test so many things and risk a worsening.
I am very curioius and i think it would help many sufferers here who are thinking of giving carnivore a try- to know how are you doing, a few years after you started this diet. As far as i can remember you where very enthusiastic with one of the influencers, who posted a video called " we where carnivores" but apparently he is not a carnivore anymore ( ia m not sure). I am severe, i suffer from POTS and Gastroparesis and apparently terrible digestion from fats and i tried it. I had to quit and i read here experiences of members who never got to their baseline after trying keto or carnivore. I already had a too low HDL ( i dont know why, my diet was mediterranean and i was so careful, but maybe because insuline resistance? ) and high LDL. I tested again just my LDL and it got very very high ( a home kit test) . I am afraid i get a heart attack if i keep pushing this diet.
I would be very thankful for an update of your status and if it helped you.
Organs as far as i know contain purines - and i seem to have a hardcore intolerance to purines. I ate a raw liver , grass feed, but the day after i felt sick.

Hi! Sorry for the late reply,

I’ve been on a strict carnivore diet for about three years now—highly ketogenic—and in my case, it truly saved my life. I had such severe IBS that I was down to 49 kilos (male, ideal weight 70 Kg, 1.74 m) and couldn’t tolerate anything at all, except for a tiny bit of white bread and turkey, and even then, only in small amounts. My hormones had completely crashed, my cholesterol was at 50, and my entire system was deteriorating rapidly.

With the carnivore diet, I had to go extremely slowly: for a year and a half, I could only tolerate pureed meat and fat, gradually increasing the fat content with the help of digestive aids, because I couldn’t even tolerate a spoonful of oil. I used hydrochloric acid, lipase, ox bile, ginger, and other tricks. Little by little, I was able to tolerate more and more food until, after a few months, I stopped losing weight, began stabilizing, and eventually started gaining some weight.

It’s an arduous and extremely slow process, especially for someone as ill as I was with ME/CFS, but in my case, I had no choice. Either I did this, or they would’ve had to remove my colon—and I assume I would’ve ended up with a central line for parenteral nutrition, with all the risks that entails.

After about a year and a half, I started eating solid food again. Fortunately, I can now eat solids, although I recently had a setback after a medication caused an ulcer, and I had to start over with purées, reintroducing solids very slowly.

The point is, my digestive system is much better now, but I still struggle with very uncomfortable SIBO—which is incredible, considering I eat nothing but protein, fat, and collagen. But SIBO can persist even without carbs, which is exactly what’s happening to me. At least I can eat and maintain a reasonable weight.

I’ve studied the cholesterol issue in great depth, as it was something that deeply concerned me. And if you’d like, I can share dozens of studies with you—including systematic reviews that compile hundreds of papers—demonstrating that cholesterol is not a cause of cardiovascular disease, especially when triglycerides are low and HDL is high. Even setting those parameters aside, while it’s true that LDL can increase cardiovascular risk in the context of inflammation and insulin resistance, there’s strong evidence—even within those studies—that higher cholesterol levels are associated with lower all-cause mortality, reduced cancer incidence, even less cardiovascular disease overall, and a greater likelihood of reaching 100 years of age. So, while it may slightly increase cardiovascular events in some cases, on the other hand, it enhances immune function and significantly reduces death from cancer, infections, and sepsis.

In fact, two recently published studies, in my opinion, mark a turning point. They compared 80 individuals with LDL levels close to 280 mg/dL after nearly five years on a ketogenic diet—average age around 55—and found that their plaque levels were very low, comparable to another group of 80 metabolically healthy individuals, matched for age, sex, and other factors, but with cholesterol levels around 120. After following the ketogenic group for a year, the increase in plaque was mostly observed in those who already had a significant amount of plaque at baseline. Moreover, the only variable correlated with plaque progression was not LDL or ApoB, but the initial plaque burden.

This clearly shows that the topic requires a lot of context. And without a doubt, in the setting of a ketogenic diet with high insulin sensitivity, low triglycerides, and high HDL, neither saturated fat, nor elevated LDL pose a cardiovascular risk—as conventional medicine and the general narrative have long led us to believe.

If you're dealing with so many digestive issues, I really encourage you to give it a try, since even in published case studies, a carnivore diet has been shown to help reverse inflammatory bowel diseases like Crohn’s disease and ulcerative colitis. If you have any questions and feel like giving it a shot, feel free to ask me anything—I’ll be happy to help.

 

[serg1942]

Hello Sergio
thanks for all your work, and that you test so many things and risk a worsening.
I am very curioius and i think it would help many sufferers here who are thinking of giving carnivore a try- to know how are you doing, a few years after you started this diet. As far as i can remember you where very enthusiastic with one of the influencers, who posted a video called " we where carnivores" but apparently he is not a carnivore anymore ( ia m not sure). I am severe, i suffer from POTS and Gastroparesis and apparently terrible digestion from fats and i tried it. I had to quit and i read here experiences of members who never got to their baseline after trying keto or carnivore. I already had a too low HDL ( i dont know why, my diet was mediterranean and i was so careful, but maybe because insuline resistance? ) and high LDL. I tested again just my LDL and it got very very high ( a home kit test) . I am afraid i get a heart attack if i keep pushing this diet.
I would be very thankful for an update of your status and if it helped you.
Organs as far as i know contain purines - and i seem to have a hardcore intolerance to purines. I ate a raw liver , grass feed, but the day after i felt sick.

By the way, purines I don't think are the problem in organ meats, but histamine. You'll need to start with low histamine meats

 

[SqueakyPScott]

Hi! Sorry for the late reply,

I’ve been on a strict carnivore diet for about three years now—highly ketogenic—and in my case, it truly saved my life. I had such severe IBS that I was down to 49 kilos (male, ideal weight 70 Kg, 1.74 m) and couldn’t tolerate anything at all, except for a tiny bit of white bread and turkey, and even then, only in small amounts. My hormones had completely crashed, my cholesterol was at 50, and my entire system was deteriorating rapidly.

With the carnivore diet, I had to go extremely slowly: for a year and a half, I could only tolerate pureed meat and fat, gradually increasing the fat content with the help of digestive aids, because I couldn’t even tolerate a spoonful of oil. I used hydrochloric acid, lipase, ox bile, ginger, and other tricks. Little by little, I was able to tolerate more and more food until, after a few months, I stopped losing weight, began stabilizing, and eventually started gaining some weight.

It’s an arduous and extremely slow process, especially for someone as ill as I was with ME/CFS, but in my case, I had no choice. Either I did this, or they would’ve had to remove my colon—and I assume I would’ve ended up with a central line for parenteral nutrition, with all the risks that entails.

After about a year and a half, I started eating solid food again. Fortunately, I can now eat solids, although I recently had a setback after a medication caused an ulcer, and I had to start over with purées, reintroducing solids very slowly.

The point is, my digestive system is much better now, but I still struggle with very uncomfortable SIBO—which is incredible, considering I eat nothing but protein, fat, and collagen. But SIBO can persist even without carbs, which is exactly what’s happening to me. At least I can eat and maintain a reasonable weight.

I’ve studied the cholesterol issue in great depth, as it was something that deeply concerned me. And if you’d like, I can share dozens of studies with you—including systematic reviews that compile hundreds of papers—demonstrating that cholesterol is not a cause of cardiovascular disease, especially when triglycerides are low and HDL is high. Even setting those parameters aside, while it’s true that LDL can increase cardiovascular risk in the context of inflammation and insulin resistance, there’s strong evidence—even within those studies—that higher cholesterol levels are associated with lower all-cause mortality, reduced cancer incidence, even less cardiovascular disease overall, and a greater likelihood of reaching 100 years of age. So, while it may slightly increase cardiovascular events in some cases, on the other hand, it enhances immune function and significantly reduces death from cancer, infections, and sepsis.

In fact, two recently published studies, in my opinion, mark a turning point. They compared 80 individuals with LDL levels close to 280 mg/dL after nearly five years on a ketogenic diet—average age around 55—and found that their plaque levels were very low, comparable to another group of 80 metabolically healthy individuals, matched for age, sex, and other factors, but with cholesterol levels around 120. After following the ketogenic group for a year, the increase in plaque was mostly observed in those who already had a significant amount of plaque at baseline. Moreover, the only variable correlated with plaque progression was not LDL or ApoB, but the initial plaque burden.

This clearly shows that the topic requires a lot of context. And without a doubt, in the setting of a ketogenic diet with high insulin sensitivity, low triglycerides, and high HDL, neither saturated fat, nor elevated LDL pose a cardiovascular risk—as conventional medicine and the general narrative have long led us to believe.

If you're dealing with so many digestive issues, I really encourage you to give it a try, since even in published case studies, a carnivore diet has been shown to help reverse inflammatory bowel diseases like Crohn’s disease and ulcerative colitis. If you have any questions and feel like giving it a shot, feel free to ask me anything—I’ll be happy to help.

This is my update on probenecid along with some info and questions. Tried 1000mg for two months than discontinued. No noticeable benefit or side effects. I'm medicating my bipolar and the possible interactions were concerning.

The only thing that positively impacted my mood/cfs was a carnivore diet but the major benefits only lasted a few weeks for me before waning, then vanishing.(I have started and stopped multiple times each time with major benefit initially). Day after day my mood would sour and I would spend more and more time in bed with the adhd coming back as well. The other challenge I had was that I simply could not maintain my weight with carnivore. I would eat maybe 2000 calories in a day, sleep for 10 hours, then wake up nauseous and only be able to eat 1600 the next day even after waiting in total 18hrs between meals. This cycle would continue until I stopped(longest 9 months). I have spent many hours asking deepseek or searching online for what might be causing this nausea but the answers are vague or should have been adressed by carnivore. I have tried ox bile, betaine, and amylase all without resolution of nausea. Normally I eat 3000 ish calories per day still with some nausea but with only meat its so bad I cant force it without puking.

For me its all tied to the bipolar. I have had some months where I can eat 3+ lbs of meat/day and other much longer stretches where I can only tolerate a lb at most. My last 9 month stretch I did ended with me looking gaunt and still manic and that's when I figured carnivore wasn't going to help. I would still like to try it even longer term but with the appetite swings/mood swings I don't know if its possible. Did the purees help a lot with nausea? And could you give more detail on the supplement stack?

I recently gave carnivore another shot and within a week even the smell of brisket was enough to make me nauseous. Do you think DAO enzyme supplementing would possibly help?

Also I have decided to skip the bb fc, bb g options for now. Too high risk for too low a reward imo. Im experimenting with weekly rapamycin rn will update after a few months.

What percentage would you say you have recovered from cfs?

 

[ruben]

Can someone please tell me on here which website I should go on to obtain "Rapamycin". Thanks in advance.

 

[SqueakyPScott]

Can someone please tell me on here which website I should go on to obtain "Rapamycin". Thanks in advance.

You can read on the rapanews website. I got mine through a longevity doc.

 

[Luxintenebrislucet]

Hi Sergio,
Unfortunately, the ketogenic diet destroyed my thyroid even more. My T3 levels are well below normal and have never been like this before. I don't know if you are aware that insulin spikes are necessary for the conversion of these hormones. Now I don't know what to do, since in my country, Germany, the hormone T3 is not prescribed. I also noticed that my cortisol skyrocketed due to the stress I put my body under with this diet. My insulin numbers have worsened significantly in just two months; my triglycerides have increased and my LDL is through the roof.
Like all of us with ME, I have insulin resistance, metabolic failure, and, like many people with LONG COVID, hypercholesterolemia. I am very concerned about the damage that these “influencers” of the carnivorous diet could be causing. My Alzheimer's genes are APO4; you know what that means, but I'm saying it for the other members: I am at high risk of developing Alzheimer's. Alzheimer's is prevented by low cholesterol levels and control of arteriosclerosis, and the recommended diet is the opposite of what these carnivore influencers promote.
We would all be very grateful if you could even start a new thread (after answering me here, please) on this topic. Many people are deeply confused and doing great damage to their systems with these new diets. I do not approve of veganism, but in my experience, the carnivorous diet has caused me serious biliary problems, which forced me to stop; my gastroparesis worsened considerably; and the rest you already know.
All of us with ME are at risk of arteriosclerosis, dementia, and premature death. I think this issue needs to be taken very seriously. It's one thing that eliminating foods helps when you can no longer tolerate anything (although meat causes me histaminosis, I don't see why I should torture myself with a diet like that), and if you couldn't eat anything else, I congratulate you for saving your life by finding the solution on your own; however, that doesn't mean that this diet you so enthusiastically promote isn't a death sentence in the long run.

I’ve studied the cholesterol issue in great depth, as it was something that deeply concerned me. And if you’d like, I can share dozens of studies with you—including systematic reviews that compile hundreds of papers—demonstrating that cholesterol is not a cause of cardiovascular disease, especially when triglycerides are low and HDL is high. Even setting those parameters aside, while it’s true that LDL can increase cardiovascular risk in the context of inflammation and insulin resistance, there’s strong evidence—even within those studies—that higher cholesterol levels are associated with lower all-cause mortality, reduced cancer incidence, even less cardiovascular disease overall, and a greater likelihood of reaching 100 years of age. So, while it may slightly increase cardiovascular events in some cases, on the other hand, it enhances immune function and significantly reduces death from cancer, infections, and sepsis.

 

[Violeta]

Hi Sergio,
Unfortunately, the ketogenic diet destroyed my thyroid even more. My T3 levels are well below normal and have never been like this before. I don't know if you are aware that insulin spikes are necessary for the conversion of these hormones. Now I don't know what to do, since in my country, Germany, the hormone T3 is not prescribed. I also noticed that my cortisol skyrocketed due to the stress I put my body under with this diet. My insulin numbers have worsened significantly in just two months; my triglycerides have increased and my LDL is through the roof.
Like all of us with ME, I have insulin resistance, metabolic failure, and, like many people with LONG COVID, hypercholesterolemia. I am very concerned about the damage that these “influencers” of the carnivorous diet could be causing. My Alzheimer's genes are APO4; you know what that means, but I'm saying it for the other members: I am at high risk of developing Alzheimer's. Alzheimer's is prevented by low cholesterol levels and control of arteriosclerosis, and the recommended diet is the opposite of what these carnivore influencers promote.
We would all be very grateful if you could even start a new thread (after answering me here, please) on this topic. Many people are deeply confused and doing great damage to their systems with these new diets. I do not approve of veganism, but in my experience, the carnivorous diet has caused me serious biliary problems, which forced me to stop; my gastroparesis worsened considerably; and the rest you already know.
All of us with ME are at risk of arteriosclerosis, dementia, and premature death. I think this issue needs to be taken very seriously. It's one thing that eliminating foods helps when you can no longer tolerate anything (although meat causes me histaminosis, I don't see why I should torture myself with a diet like that), and if you couldn't eat anything else, I congratulate you for saving your life by finding the solution on your own; however, that doesn't mean that this diet you so enthusiastically promote isn't a death sentence in the long run.

I know there's a lot of issues involved in Alzheimer's, but check out the post about it in this thread.

I tried the ketogenic diet many times, and it didn't work for me, either.

Are your T4 levels okay?

https://forums.phoenixrising.me/thr...-chronic-fatigue-syndrome.93230/#post-2474661

 

[Luxintenebrislucet]

Hey Violeta.
i will check the link.
yes, they are in range, but my tsh got higher after trying keto. And as i said, if i dont tolerate fats ( i had biliar colics and developed yellow bags in my eyes ) i dont see the point forcing my body to accept that keto is good for me. i felt awful.

 

[Luxintenebrislucet]

okay i see. i dont know if i mention that i already take metformin since 2021, and my insuline numbers got significantly worse after trying keto as my tryglicerides.

 

[Violeta]

Hey Violeta.
i will check the link.
yes, they are in range, but my tsh got higher after trying keto. And as i said, if i dont tolerate fats ( i had biliar colics and developed yellow bags in my eyes ) i dont see the point forcing my body to accept that keto is good for me. i felt awful.

I was wondering about T4 levels, because I see that there are things that can help with converting it to T3. And the TSH probably went up because the T3 was low.

I never had tests run for thyroid and adrenals, but I had read many times that ketogenic diet can be hard on both. I believe it was very hard on me, too.

No, I don't think it's a good idea to force the keto diet.

 

[Violeta]

okay i see. i dont know if i mention that i already take metformin since 2021, and my insuline numbers got significantly worse after trying keto as my tryglicerides.

Ketogenic diet cause a type of insulin resistance.

"A ketogenic diet dramatically reduces the body's needs to burn carbs, which then stunts its ability to burn carbs when we do eat carbs. Which then leads to a poor tolerance of carbs and insulin resistance. It's not just the ketogenic diet. Eating too much fat (>25% of your daily calories) also works in the same way."

There is a blog, hyperlipid, about ketogenic diet, and he explains why the diet messes with insulin sensitivity. That's why it's difficult to go back and forth between carbs and fat for generating energy.

If one is having trouble with glucose going down the right/best pathway, a SIRT1 agonist or a PKM2 inhibitor might work better than Metformin. But I'm not suggesting you should stop your med.