In So Much Pain And Scared, Getting Worse Rapidly

zewe

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The problem of refeeding starving people has many features in common with the problem of correcting the liver malfunction and hormone imbalances which follow prolonged malnutrition of a milder sort. The use of the highest quality protein (egg yolk or potato juice, or at least milk or meat) is important, but the supplementation of thyroid containing T 3 is often necessary.

Eclampsia in the Real Organism: A Paradigm of General Distress Applicable in Infants, Adults, Etc.

After I got into regular detox and getting nutrition/hydrated, I found pregnenolone to be most helpful....now, I take breaks from it except when histamine levels rise. Treating my adrenals puts me back on track.
 

HDD

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After I got into regular detox and getting nutrition/hydrated, I found pregnenolone to be most helpful....now, I take breaks from it except when histamine levels rise. Treating my adrenals puts me back on track.

Having adequate cholesterol is important for the thyroid>hormone conversion. Pregnenolone is good to take if cholesterol is too low.
 

zewe

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Having adequate cholesterol is important for the thyroid>hormone conversion. Pregnenolone is good to take if cholesterol is too low.

Actually, my cholesterol became high after it being normal for forever....it's back down and I'm still eating all that butter and fat!

I had the answer to the why...but will have to think a bit...pretty sure it had to do with cortisol levels.
 
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energyandstruct
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My doctor seems insistent on trying mestinon for CFS/dysautonomia. It's a drug that Peat suggests would cause side effects over time
It's a a reversible cholinesterase (ChE) inhibitor. I am skeptical of doing this, and I am already trying thyroid. But I do have to go along with what my doctor suggests to some extent. Do any of you suggest any specific things to watch out for with this drug or to do that would be protective, other than the generally protective things like thyroid, progesterone, etc?
 
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energyandstruct
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Having adequate cholesterol is important for the thyroid>hormone conversion. Pregnenolone is good to take if cholesterol is too low.
I have tried pregnenolone, from health natura, which is what people say the good source is, and got negative effects that seemed like estrogen or some kind of irritability/insomnia. Peat insists this is impossible with pure pregnenolone. @haidut thinks it could be more beneficial to either do a very low or ultra-high dose due to a metabolite?
I may try again, I'll try basically anything at this point haha. gonna try some of the ideas in this thread asap
 

HDD

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I have tried pregnenolone, from health natura, which is what people say the good source is, and got negative effects that seemed like estrogen or some kind of irritability/insomnia. Peat insists this is impossible with pure pregnenolone. @haidut thinks it could be more beneficial to either do a very low or ultra-high dose due to a metabolite?
I may try again, I'll try basically anything at this point haha. gonna try some of the ideas in this thread asap

I recall pregnenolone causing low blood sugar when I took it at bedtime. There have been some discussions about needing extra sugar when you supplement it.
 

tara

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I also don't really have appetite either. I don't know if there is really a way to force eating more if the metabolism is so low. I have tried but I don't think there is a way. I think the juice is good at least and milk because it's easier to get liquid calories when digestin this bad
Not just quantity, and I think needs vary from person to person, but for me and I think for some others, milk and/or cheese can be difficult (depends on person), and too much rice or sweet juices in proportion to other foods seems to get things out of balance, and I would be missing veges including especially but not only leafy greens, beef, lamb and/or seafood.

I think Ella is right that it is much better to get minerals from food. But personally, I have used a small zinc supplement at times to apparent benefit.
But I do have to go along with what my doctor suggests to some extent.
If it makes sense to you, go along. If it doesn't, I hope you aren't being compelled? If you have other things that you would like to try first, or are unsure, then can you defer it in the meantime while you find out more and try other tactics? Personally, my hunch would be to get serious about nutrition first.
 
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energyandstruct
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Not just quantity, and I think needs vary from person to person, but for me and I think for some others, milk and/or cheese can be difficult (depends on person), and too much rice or sweet juices in proportion to other foods seems to get things out of balance, and I would be missing veges including especially but not only leafy greens, beef, lamb and/or seafood.

I think Ella is right that it is much better to get minerals from food. But personally, I have used a small zinc supplement at times to apparent benefit.

If it makes sense to you, go along. If it doesn't, I hope you aren't being compelled? If you have other things that you would like to try first, or are unsure, then can you defer it in the meantime while you find out more and try other tactics? Personally, my hunch would be to get serious about nutrition first.
I'm not being forced but I have a relatively good CFS doctor , still has the faults of all doctors tho... and I just want to maintain the relationship and not have her get frustrated with me not trying things she suggests, since she's open to the other way around (prescribed compounded thyroid based on my suggestion)
 

tara

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I'm not being forced but I have a relatively good CFS doctor , still has the faults of all doctors tho... and I just want to maintain the relationship and not have her get frustrated with me not trying things she suggests, since she's open to the other way around (prescribed compounded thyroid based on my suggestion)
Are you just starting the thyroid?
If so, what would your doctor think about seeing what effect that had before introducing something else?
As a non-expert, I think it generally takes at least 2 weeks at a steady dose of T4 for blood levels to stabilise, and it's good to assess effects and consider incrementing/adjusting dose after a month.

Monitor body temps over the month to see it if it changes while you try thyroid supp.

Have you been using cronometer or similar? It's a chore, esp when low energy, but could be worth at least an occasional go to get an idea of gaps in your nutrition.
 
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energyandstruct
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Are you just starting the thyroid?
If so, what would your doctor think about seeing what effect that had before introducing something else?
As a non-expert, I think it generally takes at least 2 weeks at a steady dose of T4 for blood levels to stabilise, and it's good to assess effects and consider incrementing/adjusting dose after a month.

Monitor body temps over the month to see it if it changes while you try thyroid supp.

Have you been using cronometer or similar? It's a chore, esp when low energy, but could be worth at least an occasional go to get an idea of gaps in your nutrition.
I am just starting the thyroid and I think that's a reasonable point to bring up with her.
 

tara

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I'm really starting to lose faith in it since have gotten side effects from progestE, pregnenolone, etc. If I was seeing enough benefit from things he recommended I would write off the side effects but it just makes me feel scared and alone to be getting intense side effects from things I'm experimenting with and leaning a lot on to help cure my severe illness. If ray peat's work fails for me, there's nothing else.
Just came across your postes over on the other thread.
I'm sorry you are feeling so discouraged, and it's not surprising.

However, I wouldn't write off Peat's ideas on the basis of your difficulties, given that I think you haven't yet found a way to try some of his key ideas.

Firstly, I think faith is not something Peat has asked for - rather he strongly encourages people to learn, observe, and think for themselves. Peat has sad it's important to eat for a high metabolism, not to eat particular things. Don't get stuck on a narrow range of foods and think this is all there can be to a Peat-inspired diet.

Secondly, nutrition is the foundation.
You've tried some of his dietary advice, but have had reasons why it's not been easy to do more. You have limited resources to do or try or get help for more, and have only tried a few things. Understandable. But without adequate nutrition, your body and the supplements have insufficient to supplement or work with. That's not a failing of Peat's ideas, it's a lack of implementation.

Have you yet tried:
Liver weekly. Or small amount more often. Fresh is important (or it tastes terrible and probably loses some of it's value). If you can't get fresh liver, consider getting some ready made pate.
Oysters weekly. Or some other source of zinc.
80-100 gm + protein /day (If you are confident that milk and cheese agree with you, them great. Once people are in a weak state, not everyone handles them well - this is for you to assess. If not dairy, then other sources. Even with dairy, some more variety might be good.)
At least the broth of a decent serve of greens daily. Preferably more.
Carbs you can enjoy and digest ...If you are weakened, and mineral depleted, I'm not sure whether much rice will be helpful - may depend what else you can combine it with. Peat generally tends to favour roots, fruits and veges over grains. They generally have more useful minerals. Maybe try to get a wider variety?

These are ideas that I think are may provide useful nutrition. But also ask your own body. What does it tell you? Any hunches about what it needs? I've had times when I've had unexpected cravings that may have been significant.

Remember sunlight daily.
Zewe also had some good ideas.
 
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energyandstruct
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Just came across your postes over on the other thread.
I'm sorry you are feeling so discouraged, and it's not surprising.

However, I wouldn't write off Peat's ideas on the basis of your difficulties, given that I think you haven't yet found a way to try some of his key ideas.

Firstly, I think faith is not something Peat has asked for - rather he strongly encourages people to learn, observe, and think for themselves. Peat has sad it's important to eat for a high metabolism, not to eat particular things. Don't get stuck on a narrow range of foods and think this is all there can be to a Peat-inspired diet.

Secondly, nutrition is the foundation.
You've tried some of his dietary advice, but have had reasons why it's not been easy to do more. You have limited resources to do or try or get help for more, and have only tried a few things. Understandable. But without adequate nutrition, your body and the supplements have insufficient to supplement or work with. That's not a failing of Peat's ideas, it's a lack of implementation.

Have you yet tried:
Liver weekly. Or small amount more often. Fresh is important (or it tastes terrible and probably loses some of it's value). If you can't get fresh liver, consider getting some ready made pate.
Oysters weekly. Or some other source of zinc.
80-100 gm + protein /day (If you are confident that milk and cheese agree with you, them great. Once people are in a weak state, not everyone handles them well - this is for you to assess. If not dairy, then other sources. Even with dairy, some more variety might be good.)
At least the broth of a decent serve of greens daily. Preferably more.
Carbs you can enjoy and digest ...If you are weakened, and mineral depleted, I'm not sure whether much rice will be helpful - may depend what else you can combine it with. Peat generally tends to favour roots, fruits and veges over grains. They generally have more useful minerals. Maybe try to get a wider variety?

These are ideas that I think are may provide useful nutrition. But also ask your own body. What does it tell you? Any hunches about what it needs? I've had times when I've had unexpected cravings that may have been significant.

Remember sunlight daily.
Zewe also had some good ideas.


You're right that I can't really dismiss Peat's ideas, although I've tried a decent amount of the big or most important ones. I do think I emphasized that I still think his theory is sound and diet recommendations better than most. Not like he's a "quack" or something. I guess even if Peat's stuff hasn't cured me, more of it has worked than anything a doctor has suggested. That's a low bar, but a decent start.

I have trouble eating liver. Grew up vegetarian and i've introduced meat and shellfish (which I like a lot) but I can't get over my disgust of liver. have taken desiccated liver pills.

Milk seems to agree with me pretty good, i know people in this thread have said otherwise. Juice too. I do think sometimes the supermarket juice is too sour but what can I do ? If I recover I might spend more time juicing my own
 
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energyandstruct
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I have been trying to make sure I have some carb source with my coffee but using table sugar seems to have caused some weight gain, normally v skinny but have gained a few pounds. This is secondary to the pain and fatigue but it seems like an indication of poor diet or metabolism. Should I switch to potatoes or juice? Fats are already fairly low
 
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energyandstruct
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Not just quantity, and I think needs vary from person to person, but for me and I think for some others, milk and/or cheese can be difficult (depends on person), and too much rice or sweet juices in proportion to other foods seems to get things out of balance, and I would be missing veges including especially but not only leafy greens, beef, lamb and/or seafood.

I think Ella is right that it is much better to get minerals from food. But personally, I have used a small zinc supplement at times to apparent benefit.

If it makes sense to you, go along. If it doesn't, I hope you aren't being compelled? If you have other things that you would like to try first, or are unsure, then can you defer it in the meantime while you find out more and try other tactics? Personally, my hunch would be to get serious about nutrition first.
I thought ray was against greens? There are lots of greens from our garden but I've been avoiding them
 
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energyandstruct
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I really should have taken more detailed notes at the time after my thyroid dose. Have taken it four times and the last two times felt a definite effect. It seems to give me energy and it's hard to tell whether this is "good" energy or hypomania. Keep in mind I've been sick for awhile so just feeling "good" is such a different effect that I get a little manic, write or talk a lot more than usual. But the last time at least, the initial effect was that of making me feel worse, with tachycardia and shortness of breath, for maybe 30 minutes-1 hour, then heart rate lowering and me feeling good and energetic. And it has both times affected my sleep negatively, couldn't sleep right after I took it. For practical purposes I don't care that much if sleep is disrupted but it seems like a bad sign as ray says high metabolic energy should help with sleep.

I wouldn't say that the high energy symptoms were adrenergic though, at least I think I have a lot of experience with adrenergic responses, having in the past taken lots of stimulants and had anxiety in general. I felt warm and good. And then five to six hours it wears off and I feel maybe worse than I did before I took it.

I am going to try and be more organized about documenting it. But as these symptoms seem odd and I don't know almost anyone who has had them from thyroid, I'm grateful for any insight.

It's exciting to feel high energy. This is extraordinarily rare for me. But on the other hand these symptoms are vexing and I'm losing faith in the simple idea that CFS is basically just hypothyroidism.

I'm also going to try methylene blue for lactate problems
 
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energyandstruct
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Also trying methylene blue per haidut's suggestion. Have tried 1 mg so far, going to up it a little and see how it goes
 

Blossom

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Also trying methylene blue per haidut's suggestion. Have tried 1 mg so far, going to up it a little and see how it goes

In addition to all the helpful replies I think Cardenosine seems like it would work synergistically with Methylene blue. Another user told me cardenosine was really helpful for his chronic fatigue syndrome. I think it's worth reading up on and considering.
I'm always curious about what works for others because it's such a broad, vague, poorly understood and frustrating syndrome. I wish I had known about Peat and that this forum had existed when I was hit by CFS in the late 90's. I'm not trying to push more supplements on you but honestly I'd try that combination if I still had CFS.
 

tara

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Milk seems to agree with me pretty good,
That's great.
I have been trying to make sure I have some carb source with my coffee but using table sugar seems to have caused some weight gain, normally v skinny but have gained a few pounds. This is secondary to the pain and fatigue but it seems like an indication of poor diet or metabolism. Should I switch to potatoes or juice? Fats are already fairly low
Table sugar lacks minerals.
Have you established that sugars serve you better than starches? For me, I think I need at least half my carbs to be starchy at this time.

For fruit and juice, ripeness and quality probably matters, and different species may work better for different people - experiment.

I thought ray was against greens? There are lots of greens from our garden but I've been avoiding them
Interpretations here vary.

I've seen him caution against large quantities of raw salad.
I've seen him recommend broths from green leaves as a good source of magnesium. And sometimes he's spoken favourably of other aspects of leaf nutrition - calcium, protein, ...
But the last time at least, the initial effect was that of making me feel worse, with tachycardia and shortness of breath, for maybe 30 minutes-1 hour, then heart rate lowering and me feeling good and energetic.
Was that T3? How much? Tachycardia and breathlessness are ones I've heard of for too much T3.
Also trying methylene blue per haidut's suggestion. Have tried 1 mg so far, going to up it a little and see how it goes
If it were me, I wouldn't be in a hurry to increase dose till you've tried that for a while.
 

Terma

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beta blockers made me feel AWFUL. naltrexone probably made my bp high and so doc got scared and gavve me atenolol. Stopped the naltrexone and beta blocker, bp fine. gabapentin I was on for sleep after I got sick but before I got really really sick... helped some, idk, maybe should try again.
Yeah depending on which variant of POTS, beta blockers will either help incredibly or ruin you.

Lyrica (pregabalin) is more effective than Gabapentin, latter needs too high doses your doctor might not prescribe enough. But these are some of the most effective substances to stop a state of stress in its tracks, so it's good to keep one on hand no matter what. If it doesn't work it means the dose is too low (course you can get hooked on these but it's nowhere near an opiate/tianeptine addiction).
 
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energyandstruct
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In addition to all the helpful replies I think Cardenosine seems like it would work synergistically with Methylene blue. Another user told me cardenosine was really helpful for his chronic fatigue syndrome. I think it's worth reading up on and considering.
I'm always curious about what works for others because it's such a broad, vague, poorly understood and frustrating syndrome. I wish I had known about Peat and that this forum had existed when I was hit by CFS in the late 90's. I'm not trying to push more supplements on you but honestly I'd try that combination if I still had CFS.
It's all good. I actually have cardenosine. I havne't notice effects from it but maybe i need to keep taking it.
 

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