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.