CFS Is Likely Hypometabolism Triggered By Environmental Stress

[Wagner83]

I have tried this but am very pessimistic about the ability of diet alone to cure very severe illness. I simply can't increase my appetite and if i try and eat more i just get stuffed. I'm basically bedridden at this point, if i try and walk up and down the stairs heart rate skyrockets, etc.
when i talked to danny roddy about this he didn't recommend just trying to eat more because he said he had to start supplementing thyroid before he was able to increase calories.

how severe was your illness?

If I was in such a state of health I don't know if I'd take advice from Danny Roddy, with all due respect.

 

[goodandevil]

I have tried this but am very pessimistic about the ability of diet alone to cure very severe illness. I simply can't increase my appetite and if i try and eat more i just get stuffed. I'm basically bedridden at this point, if i try and walk up and down the stairs heart rate skyrockets, etc.
when i talked to danny roddy about this he didn't recommend just trying to eat more because he said he had to start supplementing thyroid before he was able to increase calories.

how severe was your illness?

How's your digestive function?

 

[Forsythia]

It was very bad. I was just doing my best to survive. I had quit my job and was home alone and isolated. I got into Matt Stone and reading him kicked the orthorexia out of me. I gave up all of my extremist food beliefs/rules and lived by 1 rule only: eat breakfast, lunch and dinner every day. I just began to eat whatever the **** I wanted, no more vegetarian, vegan, raw vegan, skipping meals, fasting, juicing, cleanses, etc. I realized the years of extreme eating had got me into a severe hypothyroid state . I did not take any thyroid, I just kept eating the food. And slowly I got better. My hormones became more balanced. I stopped having EXTREME temperature changes from freezing cold to burning hot. My pain started to ease up. It took a long time. Eventually I got well enough to go back to work. I eat very Peaty, but I don't consider this way of eating extreme. I eat a fairly balanced diet, eat enough calories, and follow the Peat concepts of low PUFA, high dairy/calcium, lots of fruit/sugar, at least 80 gram of protein a day. I'm feeling very well these days.

 

[energyandstruct]

If I was in such a state of health I don't know if I'd take advice from Danny Roddy, with all due respect.

Danny seems like a competent interpreter of peat's work and comes with studies normally. that said I'm not really taking advice from him as much as taking into account everything. It rings true to me that u can't simply eat more to increase metabolism if u are in a very poor state of health. The only times i've been able to eat more is when I had temporary increases in metabolism from things like tocovit, emodin... sometimes progestE... these didn't last long at all (sometimes only 1 hr of slight relief/increased energy) but allowed me to sort of feel what it would be to have faster metabolism

 

[energyandstruct]

How's your digestive function?

it's fairly okay--i mean i'm sure it's not ideal since i'm this sick and don't eat that much but i don't tend to get constipated or diarrhea at all and go regularly. beyond that i don't really know--sometimes i get nauseous.

 

[SQu]

It was very bad. I was just doing my best to survive. I had quit my job and was home alone and isolated. I got into Matt Stone and reading him kicked the orthorexia out of me. I gave up all of my extremist food beliefs/rules and lived by 1 rule only: eat breakfast, lunch and dinner every day. I just began to eat whatever the **** I wanted, no more vegetarian, vegan, raw vegan, skipping meals, fasting, juicing, cleanses, etc. I realized the years of extreme eating had got me into a severe hypothyroid state . I did not take any thyroid, I just kept eating the food. And slowly I got better. My hormones became more balanced. I stopped having EXTREME temperature changes from freezing cold to burning hot. My pain started to ease up. It took a long time. Eventually I got well enough to go back to work. I eat very Peaty, but I don't consider this way of eating extreme. I eat a fairly balanced diet, eat enough calories, and follow the Peat concepts of low PUFA, high dairy/calcium, lots of fruit/sugar, at least 80 gram of protein a day. I'm feeling very well these days.

Following a fairly successful year of treatment with antibiotics, one course a month, which helped a lot but there was still a way to go, I did much the same as this. I unfortunately put on a lot of weight because I too had been doing some extreme dieting , for fat loss, and 'health'. For years. I also felt worse for a while. In a different way. Not more fatigue, but aching, pain, inflamed thyroid gland I think because my voice dropped for a while. But my chronic fatigue gradually abated. I had not been totally bedridden but I did spend a lot of time in bed in a way that impacted my ability to work and bring up my children. I'd had it for at least 15 years by the time I did the year of antibiotics. That was 10 years ago this year. I started the refeeding thing in 2011, Peating in 2013, thyroid supplementation in 2014. Progress was slow and intermittent but has gathered momentum. I have few symptoms left but the oldest problems are the last to go. What I learned about recovery was get enough food, try broaden the range of food you can eat, eat regularly (3 hourly), and even if you have few overt digestive symptoms, aim for perfect digestion (perfectionism in health is mostly a curse but not when it comes to digestion; on the other hand stressing about your digestion will make it worse). T3 is central, and without getting restrictive, eradicate the pufa you can, consider replacing with very saturated fat sources (like lamb, topical cocoa butter)

I have tried this but am very pessimistic about the ability of diet alone to cure very severe illness.

Don't be. It is the answer. But you need endless patience to just keep chipping away at the issues where and how you can. An example being topical fats. These are so powerful in raising metabolism they may give you deficiency symptoms (happened to me - arrhythmia) but it's a thought if you can't force yourself to eat more. The body downregulates to survive and doesn't want you to raise metabolism until it is sure this is not a threat to survival anymore. Celebrate the tiniest signs of improvement. For years it was just my eyebrows!

I have just seen an improvement in some CFS people with metabolic strategies but if they go anywhere near 'overdoing' things, they're suddenly shot.

I don't have data, but what I call 'bad patches' were a keynote for me, absolutely typical, but I never got the sense I shared this pattern with many people. They wiped me out for weeks and even trying hard not to overdo things, even in a good patch doing a bit more and feeling fine for it, would sink me quickly. I no longer consider myself to have CFS, yet I still get them, just milder.

These are now rare! And short.

 

[Terma]

I did somewhat "cure" my ME/CFS symptoms, after many years. I already posted about somewhere else, but it's very vague about what helped, so it's limited use to relist the substances, and for the most part no one gives a crap about that anymore, they're all banking on the OMF funded researchers to do it all.

Until someone finds something more specific, your best bet is take try systemic fairly strong substances that jolt the body and immune system from every angle: gut microbiome, antiviral activity, metabolic entrainment, and circadian rhythm.

For example Adamantane falls under that category. It's probably not enough on its own, but it's a start. Unsurprisingly, high dose Riboflavin is also a good bet, and if you go back in forum histories, more than one ME/CFS people had results from the it, the problem being it was temporary and eventually petered out. Well, it'd tell you, take Riboflavin, Adamantane, and 10 other substances like that at the same time, just try to dose them respectfully toward circadian rhythm. This is a major flaw in many treatments, for example Niacin is actually useful but in diabetes/other they tell people to dose it before bed, when it fact it must be taken with food notably carbs.

That's all I'll find it to write for awhile.

 

[energyandstruct]

I did somewhat "cure" my ME/CFS symptoms, after many years. I already posted about somewhere else, but it's very vague about what helped, so it's limited use to relist the substances, and for the most part no one gives a crap about that anymore, they're all banking on the OMF funded researchers to do it all.

Until someone finds something more specific, your best bet is take try systemic fairly strong substances that jolt the body and immune system from every angle: gut microbiome, antiviral activity, metabolic entrainment, and circadian rhythm.

For example Adamantane falls under that category. It's probably not enough on its own, but it's a start. Unsurprisingly, high dose Riboflavin is also a good bet, and if you go back in forum histories, more than one ME/CFS people had results from the it, the problem being it was temporary and eventually petered out. Well, it'd tell you, take Riboflavin, Adamantane, and 10 other substances like that at the same time, just try to dose them respectfully toward circadian rhythm. This is a major flaw in many treatments, for example Niacin is actually useful but in diabetes/other they tell people to dose it before bed, when it fact it must be taken with food notably carbs.

That's all I'll find it to write for awhile.

interesting about the riboflavin. i had some temporary improvement from VERY high dose thiamine, but it also caused some arrhythmias and insomnia. will look into the adamantane

 

[SB4]

interesting about the riboflavin. i had some temporary improvement from VERY high dose thiamine, but it also caused some arrhythmias and insomnia. will look into the adamantane

How high dose did you go? What type of thiamine was it? Did you do magnesium or other b-vits with it?

I am soon going to try upping my thiamine. I noticed when I started doing 50mg allithiamine I got some benefits but for >2 weeks I had insomnia and weird kinds of heart palps. This however settled and I feel I made a step up. Recently upped to 200mg but couldn't notice too much of a difference however was doing other things to skew results. Plan on going up to 800mg but is expensive.

 

[energyandstruct]

How high dose did you go? What type of thiamine was it? Did you do magnesium or other b-vits with it?

I am soon going to try upping my thiamine. I noticed when I started doing 50mg allithiamine I got some benefits but for >2 weeks I had insomnia and weird kinds of heart palps. This however settled and I feel I made a step up. Recently upped to 200mg but couldn't notice too much of a difference however was doing other things to skew results. Plan on going up to 800mg but is expensive.

it was thiamine hcl. i went to 2 grams which is higher than ray recommends but it was based on this one study where they needed to do doses that high, and also based on some of the stuff resonantfm posted

 

[energyandstruct]

Following a fairly successful year of treatment with antibiotics, one course a month, which helped a lot but there was still a way to go, I did much the same as this. I unfortunately put on a lot of weight because I too had been doing some extreme dieting , for fat loss, and 'health'. For years. I also felt worse for a while. In a different way. Not more fatigue, but aching, pain, inflamed thyroid gland I think because my voice dropped for a while. But my chronic fatigue gradually abated. I had not been totally bedridden but I did spend a lot of time in bed in a way that impacted my ability to work and bring up my children. I'd had it for at least 15 years by the time I did the year of antibiotics. That was 10 years ago this year. I started the refeeding thing in 2011, Peating in 2013, thyroid supplementation in 2014. Progress was slow and intermittent but has gathered momentum. I have few symptoms left but the oldest problems are the last to go. What I learned about recovery was get enough food, try broaden the range of food you can eat, eat regularly (3 hourly), and even if you have few overt digestive symptoms, aim for perfect digestion (perfectionism in health is mostly a curse but not when it comes to digestion; on the other hand stressing about your digestion will make it worse). T3 is central, and without getting restrictive, eradicate the pufa you can, consider replacing with very saturated fat sources (like lamb, topical cocoa butter)



Don't be. It is the answer. But you need endless patience to just keep chipping away at the issues where and how you can. An example being topical fats. These are so powerful in raising metabolism they may give you deficiency symptoms (happened to me - arrhythmia) but it's a thought if you can't force yourself to eat more. The body downregulates to survive and doesn't want you to raise metabolism until it is sure this is not a threat to survival anymore. Celebrate the tiniest signs of improvement. For years it was just my eyebrows!





These are now rare! And short.

well it's not like i'm going to start eating like ***t, but frankly I have done a pretty good job at shaping a diet based on peat's recommendations, without seeing improvement. thing is I don't know that even peat thinks u can cure all cases of severe illness with diet alone and not with medication--he recommends several medications, thyroid , progesterone, aspirin, etc...

 

[energyandstruct]

it was thiamine hcl. i went to 2 grams which is higher than ray recommends but it was based on this one study where they needed to do doses that high, and also based on some of the stuff resonantfm posted

i wondered if the palpitations were caused by a kind of nutrient deficiency and i'm curious about trying this experiment again. I am particularly desperate. As in I don't know if I'm gonna make it thru this week frankly. might as well try this and try thyroid again

 

[SB4]

i wondered if the palpitations were caused by a kind of nutrient deficiency and i'm curious about trying this experiment again. I am particularly desperate. As in I don't know if I'm gonna make it thru this week frankly. might as well try this and try thyroid again

There is a big thread over on phoenixrising on reefeding which can apply to high dose thiamine REFEEDING SYNDROME - The clues to healing via induced deficiencies ; basically you probably need other things when doing high dose thiamine. Dr Lonsdale always recommends taking it with magnesium and a b-complex. Others on pheonix rising have found it necassary to consume B3 and things like potassium/phosphate.

Also I have recently abandoned another attempt at higher carb and my heart pounding is much better for it. It has been shown that a significant amount of people with CFS/POTS cannot handle carbs presumably due to autonomic dysfunction.

 

[energyandstruct]

There is a big thread over on phoenixrising on reefeding which can apply to high dose thiamine REFEEDING SYNDROME - The clues to healing via induced deficiencies ; basically you probably need other things when doing high dose thiamine. Dr Lonsdale always recommends taking it with magnesium and a b-complex. Others on pheonix rising have found it necassary to consume B3 and things like potassium/phosphate.

Also I have recently abandoned another attempt at higher carb and my heart pounding is much better for it. It has been shown that a significant amount of people with CFS/POTS cannot handle carbs presumably due to autonomic dysfunction.

actually got a potassium script. i remember some of those threads on PR confusing me because people would claim that thiamine depletes such and such nutrient without providing a study and it was hard to wade thru and figure out which of that stuff was legit. the whole refeeding syndrome thing makes intuitive sense but u know how these things are--it's tough to sort out which of these things are real problems and which are like a game of telephone with something somebody read on a website somewhere. Regardless even from just a basic bioenergetics perspective, if u do manage to increase metabolism, u will need more nutrients. I do need to figure out a good bioavailable magnesium source--might just try making magnesium bicarbonate water again.

I do have a potassium script but do you think this phosphate thing is legit?

 

[SB4]

actually got a potassium script. i remember some of those threads on PR confusing me because people would claim that thiamine depletes such and such nutrient without providing a study and it was hard to wade thru and figure out which of that stuff was legit. the whole refeeding syndrome thing makes intuitive sense but u know how these things are--it's tough to sort out which of these things are real problems and which are like a game of telephone with something somebody read on a website somewhere. Regardless even from just a basic bioenergetics perspective, if u do manage to increase metabolism, u will need more nutrients. I do need to figure out a good bioavailable magnesium source--might just try making magnesium bicarbonate water again.

I do have a potassium script but do you think this phosphate thing is legit?

The phosphate thing is probably legit in some people.

Not sure why potassium script is needed? You can just use low sodium salt (replaced with k+). As for magnesium, have you tried using or making magnesium oil? It seems to work for me.

I agree with it being hard to wade through forums and find out what's what. But on the other hand I don't think we can rely on studies too much either. I think these things will be very individual and there can be a lot of BS in studies.

 

[energyandstruct]

The phosphate thing is probably legit in some people.

Not sure why potassium script is needed? You can just use low sodium salt (replaced with k+). As for magnesium, have you tried using or making magnesium oil? It seems to work for me.

I agree with it being hard to wade through forums and find out what's what. But on the other hand I don't think we can rely on studies too much either. I think these things will be very individual and there can be a lot of BS in studies.

I don't think a potassium script is needed, but my cfs doctor did electrolye blood work and prescribed it. I"m honestly normally very on top of researching things but i've been so tired lately that i've just been taking it on her word without even looking into what ray's take on oral supplementation of potassium is. haven't noticed any dramatic effects.

 

[Terma]

interesting about the riboflavin. i had some temporary improvement from VERY high dose thiamine, but it also caused some arrhythmias and insomnia. will look into the adamantane

Yeah. But it's not going to be enough. And I think Riboflavin has better odds than Thiamine, despite the whole PDH thing, because Thiamine is less likely to produce lasting effects like microbiome modulation. At this time I would say Niacin is possibly on par with Thiamine OR better, because it's involved in producing the "anti-inflammatory" resolution-time M2 macrophage response (which can actually be a bad thing if you have real infections! Hence timing is critical and may be difficult to get right if you don't know your specific problem, e.g. whether you have an infection or simply an autoimmune response)

-----

Personal advice: Don't try to power through palpitations with any high dose supplements, that's a recipe for disaster. Stop all high dose/strong supplements, make a pure water Ca/Mg/K/Na solution (close enough: purebulk/bulksupplements; NaCl is disgusting that way though so may need to use NaHCO3+ascorbate/other or something, also avoiding too much HCO3; unless you have low-blood-pressure POTS in which case you want the NaCl and probably Cl itself, so deal with the taste; for Mg I used Gluconate, Glycinate and Aspartate, yes Aspartate, let's just say it worries me less than DMSO, and absorbs even better than Glycinate; Mg Glycinate tastes like death so it's not good for water) and drink it over the day; and try adding pure Taurine, a little Glycine (if not already in your Mg), not too much of anything. Tweak the proportions as you go along. Do that for awhile, absorbing only small amounts of Ca/Mg/K/Na at a time (over days/weeks). After you stabilize, try the other stuff again. Try not to kill yourself.

 

[energyandstruct]

Yeah. But it's not going to be enough. And I think Riboflavin has better odds than Thiamine, despite the whole PDH thing, because Thiamine is less likely to produce lasting effects like microbiome modulation. At this time I would say Niacin is possibly on par with Thiamine OR better, because it's involved in producing the "anti-inflammatory" resolution-time M2 macrophage response (which can actually be a bad thing if you have real infections! Hence timing is critical and may be difficult to get right if you don't know your specific problem, e.g. whether you have an infection or simply an autoimmune response)

-----

Personal advice: Don't try to power through palpitations with any high dose supplements, that's a recipe for disaster. Stop all high dose/strong supplements, make a pure water Ca/Mg/K/Na solution (close enough: purebulk/bulksupplements; NaCl is disgusting that way though so may need to use NaHCO3+ascorbate/other or something, also avoiding too much HCO3; unless you have low-blood-pressure POTS in which case you want the NaCl and probably Cl itself, so deal with the taste; for Mg I used Gluconate, Glycinate and Aspartate, yes Aspartate, let's just say it worries me less than DMSO, and absorbs even better than Glycinate; Mg Glycinate tastes like death so it's not good for water) and drink it over the day; and try adding pure Taurine, a little Glycine (if not already in your Mg), not too much of anything. Tweak the proportions as you go along. Do that for awhile, absorbing only small amounts of Ca/Mg/K/Na at a time (over days/weeks). After you stabilize, try the other stuff again. Try not to kill yourself.

I'll certainly try this, and try not to kill myself! was naturally risk averse but am less so because the psychological risk of dealing with prolonged illness and isolation without seeing any benefit is pretty high risk that must be weighed against any risk of various supplements.. of course I don't wanna keep making myself worse or anything! but a palpitation here or there doesn't scare me that much, at first they are unnerving tho, and I'd like to find out what they indicate , what my body is trying to tell me I'm missing

 

[Terma]

I didn't think to mention, but you could also benefit from consuming carbs the same way, sipped throughout the day instead of bolus doses at meals. If ME/CFS causes limit on carb usage (like everyone thinks, not confirming or denying) it's the logical way to optimize carb intake, similar to the minerals.

The orange juice almost works for this, it might for awhile, it can even benefit gut, but also it's distorted by presence of hesperidin, putrescine, fluoride[, acids] and other compounds both in fresh and commercial juice, not so 'pure'.

Honey is almost ideal for this, or a mix of pure glucose (dextrose) and pure fructose powder if they were good sources (probably not corn). Not sure honey will dilute that well in cold water and not sure the mineral salts/aminos are meant for hot water (never checked).

However this is a temporary solution more than anything. The 3 meal a day is better at reinforcing circadian rhythms, so as you get healthier you want to switch back to that. Seems more true for men than women for reasons I ignore.

 

[energyandstruct]

3-Iodothyronamine (T1AM): A New Player on the Thyroid Endocrine Team?

This other thyroid hormone causes torpor that sounds liek "dauer", think this is relevant to the naviaux thing.

I think Naviaux's research and theory is the best stuff on CFS out there, but I'm still not sure ray is right, seems like several people with cfs have tried thyroid without recovery... it makes sense in theory tho