Advice on methylation problems

[lostdrive]

Hi everyone,

Nine months earlier I had side effects after taking piracetam and cdp choline (extreme muscle weakness, dizziness, brain fog, tremors).
These effects haven't gone away since. I have seen many doctors and for them everything is correct they tell me that it is either in my head or fibromyalgia but that there is nothing we can do.
After several experiments and a lot of research I think I have a methylation problem.
Let me explain, I have a vitamin b9 deficiency but I have a very very bad reaction when I take b9 in any form (folic acid, folinic, quadrefolate) even with the green diet.
it's always the same pattern:
- first day I feel better (energy, strength, less brain fog ...)
- after I start to have muscle pain and weakness, extreme diziness and brain fog, difficulty breathing and swallowing. so I stop.
- once I stop the symptoms intensify for several days, I have the impression of having a microwave in my head to the point that I can no longer function at work.

I tried to take the electrolytes from ben lynch (which contain creatine b3 potassium magnesium sodium).
I also took hydroxocobalamin, glutathione and methionine vitamin b2 but nothing seems to counteract the effects of b9 and sometimes make it worse.
Yet I know that b9 is the key to the problem because at the beginning when my doctor detected b9 deficiency he gave me 5 mg folinic acid for a month.
I was in a horrible state (exteme diziness and weakness I could no longer breathe and had anxiety attacks) to the point that he thought I had myasthenia gravis.
BUT when I stopped and my b9 level went up I never felt so good in my whole life for 10 days. people didn't recognize me I had a lot of energy and no muscle problems.
When the effects of vitamins b9 waned I had a worse flashback. (microwave in my head to the point that I could no longer speak about eating and extreme weakness, difficulty in swallowing)

I think that piracetam and choline have upset my cholinergic system and that I have an excess of choline / acethycholine (which also plays in methylation).
Since then I noticed that I am sensitive to all methyls donors who all give the same kind of side effects: eggs (choline), vitmamine b12, vitmamine b9

The doctor put me on prozac which gives me contradictory effects: a little better because it increases serotonin / dopamine but prozac is also one of the rare cholinergic antidepressants which gives me the contradictory effects I think.
The other B vitamins give me tremors in a few days.

My blood tests are below:
- serum folate: ng / ml: * 2.8 (4.6 - 18.7) = low
- VITAMIN B12 pg / ml: 353 (197 - 771) = normal?
- HOMOCYSTEINE um / l: 14.94 (Inf to 15) = normal?
- methalmalonic acid (seric): <0.3 umol / l (ref <0.5) normal
- copper: 13.6 umol / l (12.5-31.8) = low
- zinc: 15.0 umol / l (8.4-14.2) = excess
- MAGNESIUM SERUM mg / L: 19.2 (17.0-25.0) = normal
- POTASSIUM SERUM mEq / L: 4.51 (3.5 - 5.1) = normal
- CALCIUM SERUM mg / L: 98 (86 - 103) = normal
- SODIUM mEq / L: 143 (136 - 145) = normal
- SERUM CHLORINE mEq / L: 104 (98 - 107) = normal
- SERUM PHOSPHORUS mg / L: 39 (27 - 45) 5/11/19 42 = normal
- 25 OH VITAMIN (D2 + D3) * 27 ng / ml (30-60) = low

I don't know if it's because of undermethylation / overmethylation, methyltrap, depletion or deficiency of something else, a folate paradox.

if the pros of methylation go through there and if you have an idea to unblock the situation or what to do I'm interested.
I want to get my life back!

Thanks everyone!

 

[drmullin30]

Hello Lost, can you provide some details on the dosages of b12 your taking and what types e.g. methylcobalamin, adensylcobalamin or hydroxycobalamin? If you start folate without sufficient b12 in place it can cause b12 deficiency paradoxical folate deficiency and side effects. Your symptoms sound like a combination of potassium deficiency and folate deficiency. When methylation starts up, the potassium need can skyrocket. Sometimes, I needed to take 4 to 6 grams a day in divided doses.

 

[lostdrive]

Hello Lost, can you provide some details on the dosages of b12 your taking and what types e.g. methylcobalamin, adensylcobalamin or hydroxycobalamin? If you start folate without sufficient b12 in place it can cause b12 deficiency paradoxical folate deficiency and side effects. Your symptoms sound like a combination of potassium deficiency and folate deficiency. When methylation starts up, the potassium need can skyrocket. Sometimes, I needed to take 4 to 6 grams a day in divided doses.

Thank you for your response drmullin30,
I tried methylcobalamin and hydroxycobalamin (500 mcg) in low doses but it increases my symptoms. For potassium I could try again with higher doses but blood test always show potassium in the right levels. Is it possible to have symptoms of low potassium with good blood levels? What is the best form of potassium? potassium bicarbonate?

 

[Mary]

For potassium I could try again with higher doses but blood test always show potassium in the right levels. Is it possible to have symptoms of low potassium with good blood levels? What is the best form of potassium? potassium bicarbonate?

@lostdrive - it is very possible to have low intracellular potassium and have normal blood levels. See this post by richvank which discusses this issue and why it happens to people with ME/CFS. It happened to me. When I started taking methylfolate, within a day my energy got better, it was great, and then a day or later I got very very tired. I realized my potassium had tanked, as I had read could happen. I started taking potassium and increased it gradually over a couple of a days. I worked up to 1000 mg. potassium gluconate a day, in divided doses, taking it with each meal and before bed. I found I even had to take it in the middle of the night - otherwise I often got leg/feet cramps in the middle of the night.

And potassium on my blood work was always in the normal range, although on the low side of normal.

Potassium bicarbonate might have effects that you don't want to have. It can reduce reduce stomach acid so I definitely would not take it with food, and I think it can reduce the overall acidity of your body. I think it would be better to stick with a regular potassium supplement which does not have this effect; otherwise you might get more symptoms for different issues.

A simple thing you can try to see if low potassium is an issue for you is to drink several glasses of low-sodium V8 or low-sodium vegetable juice. This is generally high in ptoassium (and low in sugar, important for me!). Many people have tried this and if low potassium is an issue, they often start to feel noticeably better after a few hours. This might help guide you in what you're doing.

 

[pechius]

@lostdrive , have you tried taking 20g of collagen per day or pure glycine(6g maybe)? I have seen at least one person who couldn't tolerate methyl b12, but claimed to have fixed it with glycine. I can't tolerate methyl b12, but I do very well with hydroxy b12. I've started taking collagen recently, but haven't tried methyl b12 yet.

I'm trying to follow this protocol currently:
https://chrismasterjohnphd.com/blog/2019/03/01/start-here-for-mthfr-and-methylation/