- Messages
- 6
background:
severe to moderate mecfs over 3 years (typical symptoms including pots)
long covid in Oct 2023 new symptoms
- insulin resistance
- tachycardia
- high blood pressure
- ravenous appetite
- chest tightness
My long covid symptoms were kicking my butt for like two months. I believe my body was being very wasteful because I had to eat tons of protein and carbs to relieve my symptoms. I gained so much weight. I was eating every two hours. At first I didnt understand what was going, I didn't understand metabolism. All I felt was ravenous hunger and terrible symptoms.
I started to get an idea of what was going on. I got a glucose monitor which showed insulin resistance. I feel as if I'm battling for my life when I get hungry. BP goes up to 160/95 sometimes. Tachycardia to 100 along with chest tightness. I see a cardiologist, all test come back negative.
In an act of desperation, I start megadosing B-vitamins. I experiment with different amounts for like a month straight. With hiccups but also noticable relief and improvement. The sensation of lactate and incessant gnawing of hunger subsides significantly.
Ultimately I landed up on this stack:
- 300mg TTFD (B1)
- 30-60mg Riboflavin 5 Phosphate (B2)
- 1000-1500mg Niacinamide (B3)
- 500-1000mg Pantothenic Acid (B5)
- 50mg Pyridoxal 5 phosphate (B6)
- 40mg Biotin (B7)
- No B12 because of high blood levels. No folate because I think I get enough.
And later for the kast two weeks before issues I felt an additional improvement with
- 15000IU Retinol palmitate (even though I eat liver 1-2 times a week. for the past month. I think I had a deficiency before for the last two years)
- 2000 IU Vitamin D (blood levels have akwayd been in range)
- Vitamin E mixed tocophorels 200 IU (have always loved this product)
- Vitamin K mk4 5-10mg (also never had issues in the past)
- zinc picolinate 15mg (felt effects quite noticably)
(I noticed that beef liver began to taste awful to me and had gave me nightmares once. However the addition of vitamin A in high doses improved my cold reslience and ketaris pilaris skin condition on arms after a decade. Ketaris pilaris improved by 80%. So my guess is the copper overload.)
The interrealtionships between these are quite dynamic but I felt that this was doing the job for me. I felt stable for about 2 months, and then I ran into major problems.
BP spiked to 180/100, heart rate 110, extremely hungry, high lactate feeling, severe anxiety. (Early February 2024)
And that all happened when I switched my TTFD B1 for benfotiamine. I didn't connect the dots because I had taken benfo a year ago without issue. I thought I had become imbalanced from all the B-vitamins. So I discontinued everything and my long-covid symptoms return.
Glucose is staying elevated so I take biotin and benfotiamine because I noticed it is effective for lowering glucose levels. and makes me feel better until the high blood pressure, hunger, tachycardia return a few hours later.
So for the last week I've been experiencing these horrible ups and downs.
I have stopped benfotiamine. I dont get high bp anymore. I switched to thiamine hcl. 5 GRAMS per day. Its the only thing that helps. I also added the TTFD for thiamine, 200mg per day.
For now I am treading water. I still get high-ish like 150/90 is the highest it will go but I still have to eat to relieve it. Tachycardia like 100 sometimes. Chest tightness relieved by thiamine HCL. So I still feel I'm living moment to moment. And I feel that without B-vitamins I will crash, or if not, something worse.
I'm seeing my doctor soon on Wednesday. But I did request for her to call me back sooner. But I believe she's been out of the office.
I cant continue with these symptoms. I am again desperate so I am going to start back the vitamins again that made me feel sooo much better.
Last time I did it wrong too. No attention to my glucose levels, glycogen, glycogenolysis, and all that jazz.
why do b-vitamins make me feel so much better? I respond really well to thiamine.
I am taking cofactors like selenium, glycine and trying to eat well rounded.
I feel that I have no choice but to take these vitamins.
All labs appear normal. I have gotten quite extensive labwork too.
thanks for you time and advice
severe to moderate mecfs over 3 years (typical symptoms including pots)
long covid in Oct 2023 new symptoms
- insulin resistance
- tachycardia
- high blood pressure
- ravenous appetite
- chest tightness
My long covid symptoms were kicking my butt for like two months. I believe my body was being very wasteful because I had to eat tons of protein and carbs to relieve my symptoms. I gained so much weight. I was eating every two hours. At first I didnt understand what was going, I didn't understand metabolism. All I felt was ravenous hunger and terrible symptoms.
I started to get an idea of what was going on. I got a glucose monitor which showed insulin resistance. I feel as if I'm battling for my life when I get hungry. BP goes up to 160/95 sometimes. Tachycardia to 100 along with chest tightness. I see a cardiologist, all test come back negative.
In an act of desperation, I start megadosing B-vitamins. I experiment with different amounts for like a month straight. With hiccups but also noticable relief and improvement. The sensation of lactate and incessant gnawing of hunger subsides significantly.
Ultimately I landed up on this stack:
- 300mg TTFD (B1)
- 30-60mg Riboflavin 5 Phosphate (B2)
- 1000-1500mg Niacinamide (B3)
- 500-1000mg Pantothenic Acid (B5)
- 50mg Pyridoxal 5 phosphate (B6)
- 40mg Biotin (B7)
- No B12 because of high blood levels. No folate because I think I get enough.
And later for the kast two weeks before issues I felt an additional improvement with
- 15000IU Retinol palmitate (even though I eat liver 1-2 times a week. for the past month. I think I had a deficiency before for the last two years)
- 2000 IU Vitamin D (blood levels have akwayd been in range)
- Vitamin E mixed tocophorels 200 IU (have always loved this product)
- Vitamin K mk4 5-10mg (also never had issues in the past)
- zinc picolinate 15mg (felt effects quite noticably)
(I noticed that beef liver began to taste awful to me and had gave me nightmares once. However the addition of vitamin A in high doses improved my cold reslience and ketaris pilaris skin condition on arms after a decade. Ketaris pilaris improved by 80%. So my guess is the copper overload.)
The interrealtionships between these are quite dynamic but I felt that this was doing the job for me. I felt stable for about 2 months, and then I ran into major problems.
BP spiked to 180/100, heart rate 110, extremely hungry, high lactate feeling, severe anxiety. (Early February 2024)
And that all happened when I switched my TTFD B1 for benfotiamine. I didn't connect the dots because I had taken benfo a year ago without issue. I thought I had become imbalanced from all the B-vitamins. So I discontinued everything and my long-covid symptoms return.
Glucose is staying elevated so I take biotin and benfotiamine because I noticed it is effective for lowering glucose levels. and makes me feel better until the high blood pressure, hunger, tachycardia return a few hours later.
So for the last week I've been experiencing these horrible ups and downs.
I have stopped benfotiamine. I dont get high bp anymore. I switched to thiamine hcl. 5 GRAMS per day. Its the only thing that helps. I also added the TTFD for thiamine, 200mg per day.
For now I am treading water. I still get high-ish like 150/90 is the highest it will go but I still have to eat to relieve it. Tachycardia like 100 sometimes. Chest tightness relieved by thiamine HCL. So I still feel I'm living moment to moment. And I feel that without B-vitamins I will crash, or if not, something worse.
I'm seeing my doctor soon on Wednesday. But I did request for her to call me back sooner. But I believe she's been out of the office.
I cant continue with these symptoms. I am again desperate so I am going to start back the vitamins again that made me feel sooo much better.
Last time I did it wrong too. No attention to my glucose levels, glycogen, glycogenolysis, and all that jazz.
why do b-vitamins make me feel so much better? I respond really well to thiamine.
I am taking cofactors like selenium, glycine and trying to eat well rounded.
I feel that I have no choice but to take these vitamins.
All labs appear normal. I have gotten quite extensive labwork too.
thanks for you time and advice