In So Much Pain And Scared, Getting Worse Rapidly

Jackrabbit

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another Q, it is hard for me to cut up cynomel and cynoplus into eighths extremely accurately. I know ray talks about negative effects, esp with T3 alone , that occur when one exceeds the physiological dose. Is there some leeway here? until I get t3 compounded from a pharmacy (which I will soon) this is what I have to work with. I don't want to set myself back by taking too much, but also don't want to take too little consistently. I think sometimes I have bigger pieces of a pill which are closer to a quarter (but maybe a little less) and then other times have crumbles which are like 1/16th, it's very messy overall
I cut mine in half which enables me to nibble it. If it’s whole it’s impossible to nibble small enough pieces off. It doesn’t need to be in perfect eighths, just a really small amount at a time.
 

Diokine

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I suspect that you have an extremely compromised gut barrier, along with a pronounced fungal infection.

Eukaryotes in the gut microbiota in myalgic encephalomyelitis/chronic fatigue syndrome

I think it would be good therapy to cease eating nearly anything, but especially wheat, tomatoes, starch, dairy, and eggs. A prolonged course of fluconazole or ketoconazole may be appropriate, and you will know nearly immediately if it is effective.

"Some demons come out by only prayer and fasting"
 
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Hi. You most probably have a dysfunctional Hypothalamic-Pituitary-Adrenal axis and fibromyalgia / hypothyroid. This is treatable.
If you want me to give you advise, give me a PM.
Have a nice day!
 

tara

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It's really tough to get it smaller than 1/8th without it just crumbling into tiny pieces,
Tiny crumbs might be just right.
But lots of potatoes, rice, chug juice and milk, coffee, eggs, cheese, and i've started adding in some mushrooms and shellfish.
Any greens? Or other veges?
 

paymanz

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I suspect that you have an extremely compromised gut barrier, along with a pronounced fungal infection.

Eukaryotes in the gut microbiota in myalgic encephalomyelitis/chronic fatigue syndrome

I think it would be good therapy to cease eating nearly anything, but especially wheat, tomatoes, starch, dairy, and eggs. A prolonged course of fluconazole or ketoconazole may be appropriate, and you will know nearly immediately if it is effective.

"Some demons come out by only prayer and fasting"
Thats interesting, what about meat and table sugar?! They appear to be allergen free.

And occasionally taking charcoal between meals. Even ordinary charcoal may work, if it be from clea source.
 
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energyandstruct
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I got a couple high bp readings today after I took a t3 dose and felt stress symptoms/adrenergic symptoms

they were 151/89 and 141/83 (after I had calmed down and breathed some)

I have had this happen a couple times but it's fairly rare I would say, and the readings weren't that high. I think peat said that you don't want a range of more than 50 points between diastolic and systolic though, which concerns me more.
 
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oops, im sorry. So you got High blood pressure. I see.
Well, i know there are a few ways to decrease vascular tension.
  • norepinephrine / adrenaline reduction - glutamate, GABA enhancers B6 / P-5-P, gotu kola extract, lemon balm + t3 , ashwagandha, rosemary rosemarinic acid extract)
  • renin angiotensin inhibition - milk, potassium
  • support urea / NO cyle - L-citrulline for more e-NOS vasodilation and CO2 and ATP
also orange juice + baking soda + sugar can help
 
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energyandstruct
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oops, im sorry. So you got High blood pressure. I see.
Well, i know there are a few ways to decrease vascular tension.
  • norepinephrine / adrenaline reduction - glutamate, GABA enhancers B6 / P-5-P, gotu kola extract, lemon balm + t3 , ashwagandha, rosemary rosemarinic acid extract)
  • renin angiotensin inhibition - milk, potassium
  • support urea / NO cyle - L-citrulline for more e-NOS vasodilation and CO2 and ATP
also orange juice + baking soda + sugar can help
I don't normally have high bp (my bp averages like 120/80). I just find that a few things sometimes shoot it up a little. And adrenal supps just seemed to wear me out and peat says they're basically like corticosteroids
 
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I don't normally have high bp (my bp averages like 120/80). I just find that a few things sometimes shoot it up a little. And adrenal supps just seemed to wear me out and peat says they're basically like corticosteroids
yeah basically like corticosteroids but then more complex .
a little licorice enough to not get too high cortisol. will also make more free T more DHEA and less aldosterone. But I dont know your lab DHEA and cortisol tho, so not sure IF it would be useful for you per sé.
 

sunraiser

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I don't think orthorexia causes cfs. I think infections are the usual triggers. People mix up "general fatigue" with cfs. And before I got sick I payed no attention to diet really and was normally fine. It only became a concern because I wanted to try everything to help.

My perspective is that orthorexia puts you in the position that makes CFS possible. The virus/infection aspect of CFS is a big part of the story but I don't believe, in most cases, the particular virus is relevant. The virus adds an immune and stress burden that puts a crashed metabolism over the edge into a state of incredibly poor energy production, but in a healthier person the immune challenge would be a non issue.

Orthorexia pushes you away from the intuitive eating process that can bring you closer to health - if you have added stress to an already congested liver you won't be able to metabolise fat solubles properly and this leaves a broken immune system - fat solubles are needed to efficienctly uptake minerals and minerals are needed for liver detox and also prop up the immune system.

So orthorexia can indirectly cause chronic fatigue.

The transience of our food intake is so important that I feel like I'm hammering this home in every post. Needs change so often that when you have 500 commandments about what you can and can't eat then it makes healing next to impossible. A dietary change making you feel better or worse in the short term doesn't mean you're "healing" unless it's intuitive. The problem is intuition can become so corrupted when you've been sick for a long time so it's not the most straight forward path!

This post isn't explicitly directed at you as I know you're pretty much challenging that stuff. I'm just padding out my experiences and thought process.
 

Travis

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@Travis when you cite superoxide as the possible cause of pain, do you think there's a way to take Mn or Zn or other factors to help more dismutase be produced and fight the pain? I was interested to hear you say that.

This is interesting stuff, because there appears to be no consensus of exactly how pain is transmitted through nerves. Based on physical and chemical laws and nerve composition, I feel this must occur via Förster Resonance Energy Transfer through microtubules lumens—proteins found in the center of every nerve sometimes under myelin. I feel there is very good evidence for this, and I see no indication that ions could transfer information at the speed of nervous impulses (120 m/s) in the body. Not only do I believe nothing explains this better than microtubules, I don't think any other explanation is even plausible.

Craddock, Travis. "The feasibility of coherent energy transfer in microtubules." Journal of the Royal Society (2014)

Microtubules are associated with the mitochondria, and I imagine that energy is transduced through them through coupling with heme. When oxygen is bound to heme it becomes progressively reduced to water, yet in the process singlet oxygen (¹O₂) or superoxide (Ȯ₂⁻) could form—which is also in the singlet state. The large porphyrin macrocycle of heme is fluorescent and could perhaps absorb light emitted by superoxide (~565 nm), transmitting it down the microtubule as the 'pain frequency.' I would imagine that different sensations carried through the same nerve could only be a function of frequency, nothing else. There is much evidence for superoxide being involved in pain, yet I have to read an article that could actually explain why. This is where established science ends and theory begins. Below are the articles Ray Peat cites in
Serotonin: Effects in disease, aging and inflammation, just so you know there are others who think along these lines.

Synapse. 2011 Mar;65(3):249-56. The microtubule cytoskeleton acts as a key downstream effector of neurotransmitter signaling. Gardiner J, Overall R, Marc J.

Med Hypotheses. 2004;62(2):169-72. Biophotons, microtubules and CNS, is our brain a "holographic computer"? Grass F, Klima H, Kasper S.
Ray Peat also mentions Guenter Albrecht-Buehler in one of his articles, and you can read that person's articles here. Albrecht-Buehler is a microtubule researcher who also entertains the idea that heme is responsible for transducing the nervous signal through the microtubule lumen.
 
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energyandstruct
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My perspective is that orthorexia puts you in the position that makes CFS possible. The virus/infection aspect of CFS is a big part of the story but I don't believe, in most cases, the particular virus is relevant. The virus adds an immune and stress burden that puts a crashed metabolism over the edge into a state of incredibly poor energy production, but in a healthier person the immune challenge would be a non issue.

Orthorexia pushes you away from the intuitive eating process that can bring you closer to health - if you have added stress to an already congested liver you won't be able to metabolise fat solubles properly and this leaves a broken immune system - fat solubles are needed to efficienctly uptake minerals and minerals are needed for liver detox and also prop up the immune system.

So orthorexia can indirectly cause chronic fatigue.

The transience of our food intake is so important that I feel like I'm hammering this home in every post. Needs change so often that when you have 500 commandments about what you can and can't eat then it makes healing next to impossible. A dietary change making you feel better or worse in the short term doesn't mean you're "healing" unless it's intuitive. The problem is intuition can become so corrupted when you've been sick for a long time so it's not the most straight forward path!

This post isn't explicitly directed at you as I know you're pretty much challenging that stuff. I'm just padding out my experiences and thought process.
I believe my last few posts have honestly painted a poor picture of what my actual attitude toward diet is. I eat way less restrictive than lots of people on this forum. I don't really worry about minimal amounts of PUFA and I tend to enjoy eating when I do have an appetite and eat eggs and potatoes and juice and whatever I can digest. Since i don't really cook for myself, I basically eat what's available but we've compromised and so in our family we just don't cook with vegetable oil anymore, which is kind of a simple but important part of "peat paradigm".

The main problem is I just can't force myself to eat more. The reason i don't eat a lot is not orthorexia, it's just pure lack of metabolic energy. I have tried eating high calorie stuff and shakes to get around it and it's really just a wall that i'm up against. Recent thyroid supplementation has helped that some, in fact that's one of the beneficial things I first noticed about that. But the thyroid benefits seem to have levelled off, which some people say is a common experience in CFS, perhaps because of some issue with T1am or the deidonases that doesn't happen as much in classical hypothyroidism.
 
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energyandstruct
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The transience of our food intake is so important that I feel like I'm hammering this home in every post. Needs change so often that when you have 500 commandments about what you can and can't eat then it makes healing next to impossible. A dietary change making you feel better or worse in the short term doesn't mean you're "healing" unless it's intuitive. The problem is intuition can become so corrupted when you've been sick for a long time so it's not the most straight forward path!

This post isn't explicitly directed at you as I know you're pretty much challenging that stuff. I'm just padding out my experiences and thought process.
Yeah I am trying to work on my intuition and perception here, because it's not like I can just take a theory-heavy approach to problem-solving while this sick, but it's tricky.

I mean some of the things are counterintuitive. And I don't have someone close to me that has good intuition or knowledge about these things. I do email with Peat and Danny Roddy and they are solid with advice but also it's different than working with someone close to you on your specific problems and I feel like sometimes they give the same advice despite very individual, different responses to things that are supposed to be universally good, like thyroid.
 
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energyandstruct
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My main problem is that thyroid was really helping and working for like two weeks and now the effect is starting to wear off but I don't know how much it's okay to increase dose before you start suppressing natural thyroid production and whatnot. It's so frustrating to repeatedly have things work in the short term and then stop working. I know that there are negative and positive feedback loops in metabolism, but i've become more pessimistic than peat on this and don't think the organism is necessarily geared toward regeneration; as that is decidedly not my experience. Almost the opposite, as even when I do things that help and increase my metabolism, it seems like I'm throwing resources down some kind of metabolic hole or trap, that self-corrects and adjusts in the opposite direction, i.e. like there's some kind of intelligent agency in my system working against health.

The fact that people with CFS specifically so often report things helping temporarily and then stop working makes me wonder about the level of negative feedback involved or allostatic feedback, it seems unbearably complex.
 
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energyandstruct
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My main problem is that thyroid was really helping and working for like two weeks and now the effect is starting to wear off but I don't know how much it's okay to increase dose before you start suppressing natural thyroid production and whatnot. It's so frustrating to repeatedly have things work in the short term and then stop working. I know that there are negative and positive feedback loops in metabolism, but i've become more pessimistic than peat on this and don't think the organism is necessarily geared toward regeneration; as that is decidedly not my experience. Almost the opposite, as even when I do things that help and increase my metabolism, it seems like I'm throwing resources down some kind of metabolic hole or trap, that self-corrects and adjusts in the opposite direction, i.e. like there's some kind of intelligent agency in my system working against health.

The fact that people with CFS specifically so often report things helping temporarily and then stop working makes me wonder about the level of negative feedback involved or allostatic feedback, it seems unbearably complex.
to be clear, i'm well aware that refeeding someone and nursing back to health involves patience. I'm fine with this process being slow. But I often feel like it never even is going anywhere. I really wonder how many people have come back from clinically diagnosed CFS with this approach. It seems like lot of people recover from diet-induced health issues with Ray's work, as his diet is way more reasonable than the ones they were on, like keto or veganism, but I don't know if people recover from severe CFS not induced by diet.

It's almost more frustrating for these things to work temporarily than not work at all.

right now I take tiny cynomel doses twice a day, about, and 1/8th-1/16th cynoplus once a night. This doesn't feel like enough at all but I don't know how much I can increase it. maybe small doses more often?
 
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I made a mistake earlier about advising glutamate, sorry my bad. No, that amino acid seems to be in excess in Lyme's.

You probably have a high glutamate activity in the brain and body. Consider oxaloacetate, that activates an enzyme responsible for scavenging glutamate. You can get this at a pharmacy. Also Gotu Kola (centella asiatica) protects against excessive glutamate and is pro GABA the calming neurotransmitter.

L-Citrulline taken with food inhibits the uptake of arginine and glutamine that converts into glutamate. Helps make growth hormone for repair. edit. Also Glycine helps to increase Growth Hormone.

By the way, Gotu kola inhibits mast cells, which is associated with Lyme coz of high histamine.

edit, info - link
 
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Blossom

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but I don't know if people recover from severe CFS not induced by diet.
I recovered from clinically diagnosed CFS attributed to EBV. I do think undiagnosed celiac disease was involved too. I'm just letting you know because I'd hate for you to lose hope. I know it's hard not to when you're in the thick of suffering.
 
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