refeeding syndrome like symptoms with severe mecfs. please help

skywxlker

background: I have had mecfs 2.5 years then Long Covid for 5 months starting in October. I have been trying various things to get better regarding Ray Peat based principles. Anyway I am showing some refeeding syndrome-like issues.

I feel incredibly hungry these days! I'm eating tons of protein and carbs every two to three hours to keep severe pain away. Overall like 200g of protein and 800g of carbs despite being sedentary.

So long story short I had mecfs two years. I was very severe for like 4 months until trazadone gave me a boost and I became moderate severe. Except it made me sooo hungry. Eating everything in sight every 2 or three hours. eventually I gained like 80lbs in a few months until finally the hunger subsided and the weight fell off. So now I have so have moderate CFS and I am mostly couchbound and housebound.

fast forward a year and a half. I get covid. (for that two years I was trying a bunch of supplements making some decent progress but not much.)

After some rough covid, I get super hungry again!! eating and eating. if I don't I eat I get severe crash like symptoms. I also now have tachcardia, high blood pressure, chest tightness. non stop eating and gaining weight like crazy. activity levels are very poor now. With mecfs, we have serious metabolic issues, possibly malnutrition.

In desperation I started taking b vitamins and they helped! along with high doses of progesterone. like 100mg topical. and it heals my heart problems, tachy, bp, and helps with hunger and lactate. and I was stable for two months or so.

but I run into problems when I start benfotiamine. It gives me high blood pressure and tachycardia. plus the hunger comes back like crazy. I get off of it but then those issues come back. so again being in so much pain and malaise if I dont eat. I megadose thiamine hcl and it helps me a ton. I took like 5 grams a day for a week and it helps out everything again. I

I slowly reduce the thiamine in the span of a week and introduce other b vitamins.

still have my symptoms under control. feel massively better with

100mg TTFD
10mg B2. (dont react well to it)
200mg niacinamide
100mg B5
50mg B6
40mg Biotin

(4-5/day after a meal)

and sometimes B9, B2, B12. I noticed I felt worse on these....
started these last week after having issues with benfo, and megadosing thiamine hcl in early February.

whole time I'm too sick to see my doctor. and my appointments keep getting rescheduled

now I'm doing good for a few days but I'm sooo hungry!!! but at least symptoms are gone! and I dont feel like I'm dying (people with very severe mecfs know what I'm talking about).
Imo mecfs is severe malnutrtion akin to starvation. We begin to use protein as fuel instead of glucose or even fatty acids.

Now last night some major issues. I accidentally doze off and forget to eat protein. I'm jolted awake and adrenaline surges through my body. I'm so hungry. I chug some juice, honey and start eating beef.

But I feel awful symptoms the whole time. severe panic, hunger, shaking. I even have loose stools from it. after stuffing my face. and still not feeling so good, I take my b vitamins and progesterone and finally after a few hours it calms down. this was 5 hours ago and I'm starting to feel kind of bad again. so I need to eat!

I'm monitoring my glucose every hour.

Idk what to do, what I've done to myself.... I was damned if I do, damned if I dont kind of thing. because that endless hunger post covid wouldnt stop and those heart issues were so bad. I was going to crash or end up weighing 300 lbs as I gained like 70lbs in two months.

Its my body starving from within.
I'm afraid of what is happening. I'm trying to reach my doctor.

I dont know if hospitals will help. I feel like I know how much food to eat and what kind and when. they obviously dont understand much about MEcfs.

I was doing good til I missed a meal! whats strange is that I'm really good for like a few hours then the hunger hits but my symptoms are gone. if I eat, I'm kind of good again. this time feels worse than I crash bevause of all the adrenaline. I'm afraid its refeeding like syndrome.

only thing I can add is that I was taking cyproheptadine during covid which works a lot like trazadone!

I also took progesterone during covid and I think it saved my life. and it continues today. I have taken b vitamins without it and it doesnt work. I have tried progesterone only and it doesnt work.

while on these b vitamins and progesterone, I have had moments where I feel amazing. even since before I got covid with moderate mecfs. All my symptoms gone. I felt clear, and without fatigue for the first time ever. I have never felt so relaxed and yet so energized. it comes in moments.

but its been a rollercoaster when I dont eat enough or mess up.

what do I do?

my options:

hit the gas on b vitamins and eat a fuck ton. like 200g of protein and 1000g of carbs just to not crash. never ever dare skip a meal. lots of hunger, less lactate.
stop everything, and keep stuffing my face except I'm burning protein and getting super fat. but at least not risking refeeding syndrome. but also possibly risk a crash that will permanently disable me with mecfs. or worse. lots of hunger, high lactate.

my theory is that number one is risky because I could have malnutrtion and these swings do so much damage. Plus showing some partial refeeding syndrome.

thinking of taking even more b vits. I have taken up to 700mg TTFD thiamine, 1500mg B3, 100mg B5, 50mg B6, 40mg B7.

Going to add B2 now also and a bit of folinic acid.

I'm seriously messed up you guys. I was almost permanently disabled with mecfs. after you become permanent, it's difficult to reintroduce nutrition.

So I'm treading water here. Both of my options are risky. My body is having difficulty find homeostasis.
I'm quite afraid of the situation I'm in.

All I know is that b vitamins have given me glimpses of good health.. Along with progesterone megadosing.

Kind of think I'm in too deep and should just double down on b vitamins. thing is, I risk mineral and nutrient imbalances. or am I?

I currently take like 500mg TTFD, 600mg niacinamide, 400mg B5, 50mg B6, 40mg B7.

Thinking of adding more B3 and B2.

also why am I so damn hungry? my theory is that serotonin antagonists do something crazy to my brain. I eat and eat and still feel hungry. Add some malnutrition or malabsorption.... so I think I have some partial, refeeding syndrome. some nutrient I'm still lacking.

I eat a ton of beef, milk. apple juice, OJ, collagen and honey. for now but sometimes eggs and potatoes.

Doctors and hospitals dont know anything do they? they will think I'm crazy.

thanks for your help.

skywxlker

@skywxlker I was doing a low salt diet to manage my bp. salt would skyrocket my bp but I have been introducing it again because it doesnt seem to go that high. I'm taking magnesium like 400mg per day. I recall higher doses gave me diarrhea. eating like 5000 calories per day. I do feel a noticable shift, when I take b vitamins but tend to swing too much. and I absolutely cannot miss a meal.

I think I'm starving from withing. utilizing aminos for fuel.

I read that b vitamins can prevent wasting syndrome. so again, I might double up on B3, B7 and more B2.

idk wtf is wrong. my health is a disaster. doctors don't know shit.

skywxlker

@skywxlker dang it guys. I do think I'm wasting. Eating so much to stop the pain and adrenaline. If I dont eat something bad will happen.
I'm still very overweight though... what does that mean? Its like I'm starving from within.

Going to up the niacinamide. and everything else too a bit.

izkrov

Odd question. Have you tried taking aspirin at night?
The combination of B1/B3/B7 and aspirin should be more stabilizing, akin to taking thyroid rather than just taking vitamins alone.
What kind of magnesium are you taking as well?

skywxlker

@izkrov No I dont take aspirin. I was for a long time but I dont feel much from it. should I reintroduce?
I take magnesium glycinate.

I think I am wasting. All my nutrients going down the drain. mecfs people are serious hypothyroid and severe folks succumb to malnutrtion/wasting.

izkrov

@skywxlker My guess really would be hypothyroidism as the main reason you're wasting nutrients, you're not retaining any magnesium due to a lack of it, and any energy production downstream from there is thrown out. I would supplement thyroid if I were you, I really think it'll be a huge game changer.

I recall an old haidut post saying that mitochondrial uncoupling only happens at larger doses, I think 2g/3g at minimum. If you can tolerate it, I'd probably go for sodium acetylsalicylate, like 2.5-3g (with K2 preferably) at night and see how that affects you along with the B vitamins.

@skywxlker said in refeeding syndrome like symptoms with severe mecfs. please help:

@skywxlker I was doing a low salt diet to manage my bp. salt would skyrocket my bp but I have been introducing it again because it doesnt seem to go that high. I'm taking magnesium like 400mg per day. I recall higher doses gave me diarrhea. eating like 5000 calories per day. I do feel a noticable shift, when I take b vitamins but tend to swing too much. and I absolutely cannot miss a meal.

Which magnesium are you taking? I take magnesium glycinate, 3100mg, which equals to 400mg pure magnesium.
High dosing thiamine will improve your magnesium tolerance. Magnesium lowers stress and lowers cortisol, which I think would be helpful. It is important for you to discern how much pure magnesium is in your 400mg supplement.

" Cortisol: Magnesium indirectly reduces the release of ACTH by modulating the neurotransmission pathways, and therefore decreases cortisol levels in the body [42];"

Can you drink milk? Ray Peat recommended 2 quarts of 1% milk + a quart of orange juice per day for someone who wanted to lose weight. I think he said the calcium is helpful.

I think I'm starving from withing. utilizing aminos for fuel.

Sounds like high cortisol to me.
Here's some Ray Peat articles about cortisol.
You can go to one of the articles, then click on Control key and the F key together to bring up a search engine, then type Cortisol into the search space to find where it is mentioned in the article.

Here's Ray Peat discussing Cortisol in audio interviews.

I read that b vitamins can prevent wasting syndrome. so again, I might double up on B3, B7 and more B2.

idk wtf is wrong. my health is a disaster. doctors don't know shit.

You mention that thiamine hcl was helpful in high doses. If you found it helpful, you might consider continuing to take it in high doses. Dr. Costantini provided information regarding how to determine your optimum dose here. It is based on body weight and would provide you some guidance. Consistency is really important. Just taking high doses for a week won't resolve anything. In addition to high dose thiamine hcl, I also take 100mg of niacinamide, 4Xday and 100mg of riboflavin, 4Xday, and 3100mg of magnesium glycinate, divided into 2 doses daily.

Here's a video about high dosing thiamine.

Thiamine is needed to convert glucose into ATP (cellular energy). If you are deficient in thiamine, your body thinks you are starved for sugar because your cells cannot utilize it even if it is available in the blood. So adrenaline gets triggered to tell your liver to release more stored sugar. But that doesn't fix the problem because the cells cannot use the sugar because of the thiamine deficiency. So cortisol gets triggered. And all kinds of unfortunate body chemistry happens.

Thiamine is also involved in the metabolism of fats and proteins:
The importance of thiamine (vitamin B1) in humans
"Thiamine (thiamin, B1) is a vitamin necessary for proper cell function. It exists in a free form as a thiamine, or as a mono-, di- or triphosphate. Thiamine plays a special role in the body as a coenzyme necessary for the metabolism of carbohydrates, fats and proteins. In addition, it participates in the cellular respiration and oxidation of fatty acids: in malnourished people, high doses of glucose result in acute thiamine deficiency. It also participates in energy production in the mitochondria and protein synthesis. In addition, it is also needed to ensure the proper functioning of the central and peripheral nervous system, where it is involved in neurotransmitter synthesis. Its deficiency leads to mitochondrial dysfunction, lactate and pyruvate accumulation, and consequently to focal thalamic degeneration, manifested as Wernicke’s encephalopathy or Wernicke–Korsakoff syndrome. It can also lead to severe or even fatal neurologic and cardiovascular complications, including heart failure, neuropathy leading to ataxia and paralysis, confusion, or delirium."

skywxlker

@mostlylurking thank you.

thoughts on TTFD? it does seem to work for me...

My magnesium is 400mg elemental weight. So that means I'm taking like 1200mg because I would take three per day.

thoughts on upping B3 to 2-3 grams?

I'm going to up TTFD to possibly 1000/day. I'm like 500mg per day. I do feel slight effects.

When I was taking thiamine HCL, I took 10 grams actually to relieve my symptoms. But after 3 days of that I found that 2,3 grams was doing the trick. You are probably right, I think I stopped prematurely.

skywxlker

@izkrov yeah probably except I've tried thyroid and it seems to backfire. Also excessively hungry. My thyroid markers were within normal. TSH like 1.4.

It just made me feel wired. Even small doses

@skywxlker said in refeeding syndrome like symptoms with severe mecfs. please help:

@mostlylurking thank you.

thoughts on TTFD? it does seem to work for me...

I couldn't tolerated TTFD because I had low glutathione that was caused by my high oxidative stress which was caused by my mercury toxicity. If you are not having negative effects from it, then you might should stick with it.

Dr. Chandler Marrs treats people with TTFD; some of them are taking pretty high doses (more than a gram, iirc. She has some videos on youtube you might find of interest.

My magnesium is 400mg elemental weight. So that means I'm taking like 1200mg because I would take three per day.

Which type of magnesium is it?

thoughts on upping B3 to 2-3 grams?

I wouldn't do it myself. I take niacinamide, 100mg, 4Xday. I had taken 200mg, 2Xday for maybe 6-7 years, but then I switched to the 100mg, 4Xday and lost 35 pounds during the next 3-4 months. Made quite an impression on me.

I'm going to up TTFD to possibly 1000/day. I'm like 500mg per day. I do feel slight effects.

Watch the Dr. Chandler Marrs videos I linked to above.

When I was taking thiamine HCL, I took 10 grams actually to relieve my symptoms. But after 3 days of that I found that 2,3 grams was doing the trick. You are probably right, I think I stopped prematurely.

Consistency is very important.

@skywxlker said in refeeding syndrome like symptoms with severe mecfs. please help:

@izkrov yeah probably except I've tried thyroid and it seems to backfire. Also excessively hungry. My thyroid markers were within normal. TSH like 1.4.

It just made me feel wired. Even small doses

I'm hypothyroid. I was diagnosed with it over 40 years ago. I'm a big believer in using a good endocrinologist for help with optimizing the dose needed. I don't believe it's a smart thing to play around with. You can give yourself heart palpitations doing that. It takes many months of blood testing and titrating the dose up slowly to finally reach your optimum dose.

If you want to find a good endo, a helpful shortcut is to ask your local pharmacists which doctors are prescribing NP Thyroid by Acella. It is a high quality desiccated thyroid prescription medication. If the doctor is already prescribing it, they should have a better idea what they are doing.

skywxlker

@mostlylurking

I'm taking mag glycinate. 800-1200mg across the day.

I think I will switch back to hcl version. I just took two grams. The week I took it did solve my most pertininant issues. I shouldn't have stopped it so soon.

do you foresee any issues with mineral deficiencies? Also why not b7? is that just a personal thing? and do you think that the thiamine megadose will fill in that gap?

I spoke to ER and they said they couldn't do anything except that it does appear I have metabolic syndrome. Likely deficiencies, malabsorption, glycogen storage disease, etc.

They are going to get the hospital to talk to my doctor asap.

skywxlker

@mostlylurking I'll do my best to do this.

@skywxlker said in refeeding syndrome like symptoms with severe mecfs. please help:

@mostlylurking

I'm taking mag glycinate. 800-1200mg across the day.

This is the magnesium glycinate that I am taking. Please take a look at the amount that is recommended (3100mg) and that this amount provides 400mg of magnesium. Please read the info about magnesium glycinate at the link. It might take a little time for you to be able to increase your magnesium glycinate dosage and that's OK. Take your time. Dr. Costantini advised his patients to take 75mg of magnesium per WEEK because he didn't want to risk the possibility of digestive upset.

I think I will switch back to hcl version. I just took two grams. The week I took it did solve my most pertininant issues. I shouldn't have stopped it so soon.

Consistency is very important. Dr. Costantini always advised his patients to divide the daily dosage in two and take one dose before lunch (mid-morning) and one dose mid-afternoon. Always take it with water, never juice, and take it at least 30 minutes from eating to get the best benefit.

do you foresee any issues with mineral deficiencies? Also why not b7? is that just a personal thing? and do you think that the thiamine megadose will fill in that gap?

Dr. Costantini liked to get his patients to stop all supplements for several weeks when starting high dose thiamine so that he could confirm that the improvements seen were really from the thiamine. Then, after the few weeks had passed, he would allow them to reintroduce the other supplements as they saw fit.

Elliot Overton has mentioned several things that can become deficient from taking high dose thiamine including: riboflavin (I take 100mg, 4Xday), niacinamide (I take 100mg, 4Xday), potassium (I drink around 18 oz of orange juice daily) zinc ( I added 15mg of zinc recently), and I think also selenium (I take 200mcg/day of selenium).

You might want to take a good b-complex while high dosing thiamine hcl. Here is one.

Elliot's website
Elliot's videos on thiamine

I spoke to ER and they said they couldn't do anything except that it does appear I have metabolic syndrome. Likely deficiencies, malabsorption, glycogen storage disease, etc.

I think that high dose thiamine hcl will correct a lot of these problems. The liver (along with all the other organs) must have thiamine to make the cellular energy so that it can perform its functions. Dr. Costantini said that his patients would continue to improve for 6 months and this is what I experienced too. Dr. Chandler Marrs said that you didn't get in this shape overnight and it will take some time for the different health issues to "unwind".
suggested reading: Hiding in Plain Sight: Modern Thiamine Deficiency

They are going to get the hospital to talk to my doctor asap.

Here's an article for your consideration:
Thiamine Saves
Please read.
“…Many people who have undertaken a low carbohydrate diet have noticed a change for the worse in sleeping habits. Since lowering carbohydrate intake always includes lowering grain consumption and thus thiamin consumption, this is a potential mechanism by which low carbohydrate diets may negatively impact sleep. The problem may not be in the low carbohydrate status so much as low GABA caused by a lack of thiamin intake. In people who periodically binge on sugar, overexercise, or drink coffee or alcohol the problem will be worse. Carbohydrate intake could come in to play once adrenal insufficiency sets in because in the absence of carbohydrate, cortisol is used to increase glucose output by the liver. Also, since low thiamin has been shown to reduce liver glycogen storage, this would impact your ability to meet the brain's glucose needs when asleep.”

secondkelping

@skywxlker do you eat liver and oysters? Why get B vitamins from sups instead of getting them from liver? I would eat liver daily and oysters daily until you either have a negative reaction (then reduce to once a week for both) or until your symptoms stop.

Also, another better source of B vitamins is brewer's yeast, so I would try to use that as well in excess.

Also, maybe reduce the meat and replace with gelatin, milk, and tropical fruits. You shouldn't need tons of protein if your in such an unhealthy state.

@secondkelping said in refeeding syndrome like symptoms with severe mecfs. please help:

@skywxlker do you eat liver and oysters? Why get B vitamins from sups instead of getting them from liver? I would eat liver daily and oysters daily until you either have a negative reaction (then reduce to once a week for both) or until your symptoms stop.

Ray Peat said the most frequent to eat a little liver is once a week. Although I have some in the freezer, I've gotten out of the habit. I think there's too much A in liver to eat it more frequently than once a week. Although I do eat oysters occasionally, I'm not planning on ever eating them more than once a week. But that's me and my health ideas; you are free to do whatever you please.

secondkelping

@mostlylurking I agree but I think you should treat yourself as if you are in a severe deficit of nutrients and eat until you no longer crave any of these nutrient dense foods. Then, switch to eating them once a week.

It would be better to gorge on nutrient dense foods to see if that's the problem or to see if it could be something else. Just a thought.

@secondkelping said in refeeding syndrome like symptoms with severe mecfs. please help:

@mostlylurking I agree but I think you should treat yourself as if you are in a severe deficit of nutrients and eat until you no longer crave any of these nutrient dense foods. Then, switch to eating them once a week.

It would be better to gorge on nutrient dense foods to see if that's the problem or to see if it could be something else. Just a thought.

If you are deficient in say, thiamine or whatever, and you gorge on things that don't have much of that in them but do have enormous amounts of vitamin A in them (like liver), you can gorge and gorge for weeks on end and never feel better and wind up with vitamin A toxicity on top of whatever is actually the problem.

secondkelping

@mostlylurking I think it's a lot harder to become vitamin A toxic than many believe, but this is only true if you're eating enough calories with the various nutrients that one needs. I mean, I've eaten liver for 2 weeks straight before my body no longer craved it. Maybe 2 oz. a day. This is after going an extended period w/o having it for a fast.

I just now started to feel fully satiated, so I'm back to 4 oz. serving per week (I technically eat a "bite" per day). Anyway, no signs of toxicity because I was low on Vit A and B vitamins. If I pushed it now, since I've been satiated then I would probably see negative effects sooner rather than later.