Ninan
Senior Member
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A friend of mine is really sick so I'm posting this for her. She has tested positive for MTHFR mutation but this was in the 90's and she doesn't know what kind she has. Her doctor then gave her folic acid but she noticed no effect. Now she's tried adding folic acid again and is getting worse. She doesn't know what's causing it.
Is everyone with a MTHFR mutation supposed to avoid folic acid? Can that explain her symptoms? Here is her story:
"Have defective gene MTHFR (don't know which type). Have taken b12 in the form of oral cyanokobalamin, 1 mg, since mthfr problems were discovered, ca 17 years ago. Never tried injections. Only tried higher dose, 2 mg, when first diagnosed. Then another doctor lowered to 1 mg when bloodwork came out normal. Also was first prescribed folic acid, but only took that until bloodtests were normal, then stopped altogether, as per same doctor. So only 1 mg oral cyanokobalamin för 15+ years.
Have severe insomnia. Have been sleeping w/ help of half a dozen sleep medications for many years. Especially when I crash, my sleep gets worse (both harder to fall asleep, harder to stay asleep, impossible to fall asleep again if awakened, worse circadian rhythm etc). Have solved this with temporary overmedication and more strict pacing. This has always worked. Of course, have unrefreshing sleep.
Was found to have vitamin D deficiency, have taken 10.000ie daily for ca 16 months. After 2-3 months, I noticed better mood (although already on 120mg Cymbalta for many years) and better sleep overall, but esp falling asleap easier and sooner.
April 1st, I started taking folic acid. I remembered that the doctor who diagnosed my mthfr gene in the 90's prescribed not only b12, but also folic acid, so I started supplementing that with Solgar's folic acid, 400mcg. A few months before that, I had also started taking 100mg Q10 and 500 mg Acetyl-L-Carnitine
The last month I have had severe sleep problems. My sleep behaves exactly as it did before vit d, only worse in all areas. Have not had insomnia this bad for ca 8 years.
Also, my husband told me today that I have seemed depressed for the last two months. Am housebound/bedridden, and have experienced progressive worsening for 21 years, so ascribed that to normal turn for the worse cycle with a side of grieving. And also, not sleeping is a sure way to depression.
Other sympyoms that have been exacerbated are numbness and coldness in hands/feet, and serious cognitive impairment to the point of not understanding normal conversations.
Have had sleep problems of this caliber for three weeks. My problems center around the following: Circadian rhythm back to my old normal, i e sleep arrives at about 06 am. If I go to sleap earlier than that, with the help of my "horse tranquilizors", I wake up after 4 hours and have to take another round of most of my sleeping pills, and then get another 4h. This may sound much to some, but it makes me suicidal. My body needs min.10h or my symptoms flare up ridiculously. Even if I fall asleep at six, I only get 8 h. This did not start in conjunction with any outside event, but was still quite sudden. And a week ago, I stopped taking anything that I have only taken in 2015.
Re being suicidal. I am not being overly dramatic. The same thing happened eight years ago, when I had recently moved, didn't have a doctor, and hence no sleeping pills. My insomnia got bad enough that I had to seek psyciatric help. With the deterioration of my ME since then, I break down sooner. My safety margins are close to zero. I have had a clinical depression, and this feels much more compartmentalized. Sleep sucks, but other than that I'm normal. But when I wake up too soon after already overdosing to fall asleep at all, I feel despondent. I dream of taking 30 pills and be done with it. Not that I want to die, or would actually kill myself, but because the desperation for sleep is larger than anything.
It would seem this is not my normal cycle of deterioration. Have since learned of others who got insomnia from both Q10 and ALC. And that people with the mthfr gene mutation cannot digest folic acid. Instead, they get b12 deplored. That would explain the cognitive impairment. But regarding the insomnia, it feels like my body can't get to the D3. Could thw folic acid block uptake of D3?
The sleeping pills I take are, except for 800mg magnesium, an ibuprofen and a Tylenol: 10 mg Zolpidem, 3 mg fast acting melatonin and sometimes an additional slow release of 3 mg, 25 mg propiomazine (antihistamine), and 10 mg mianserin (precursor of mirtazapin and a tetracyclic antidepressant).
Can taking a folic acid with a mthfr mutation for 5+ months do this? Have you heard of similar occasions? Do you have any input? Would greatly appreciate any additional help! Love, Anja from Sweden"
Is everyone with a MTHFR mutation supposed to avoid folic acid? Can that explain her symptoms? Here is her story:
"Have defective gene MTHFR (don't know which type). Have taken b12 in the form of oral cyanokobalamin, 1 mg, since mthfr problems were discovered, ca 17 years ago. Never tried injections. Only tried higher dose, 2 mg, when first diagnosed. Then another doctor lowered to 1 mg when bloodwork came out normal. Also was first prescribed folic acid, but only took that until bloodtests were normal, then stopped altogether, as per same doctor. So only 1 mg oral cyanokobalamin för 15+ years.
Have severe insomnia. Have been sleeping w/ help of half a dozen sleep medications for many years. Especially when I crash, my sleep gets worse (both harder to fall asleep, harder to stay asleep, impossible to fall asleep again if awakened, worse circadian rhythm etc). Have solved this with temporary overmedication and more strict pacing. This has always worked. Of course, have unrefreshing sleep.
Was found to have vitamin D deficiency, have taken 10.000ie daily for ca 16 months. After 2-3 months, I noticed better mood (although already on 120mg Cymbalta for many years) and better sleep overall, but esp falling asleap easier and sooner.
April 1st, I started taking folic acid. I remembered that the doctor who diagnosed my mthfr gene in the 90's prescribed not only b12, but also folic acid, so I started supplementing that with Solgar's folic acid, 400mcg. A few months before that, I had also started taking 100mg Q10 and 500 mg Acetyl-L-Carnitine
The last month I have had severe sleep problems. My sleep behaves exactly as it did before vit d, only worse in all areas. Have not had insomnia this bad for ca 8 years.
Also, my husband told me today that I have seemed depressed for the last two months. Am housebound/bedridden, and have experienced progressive worsening for 21 years, so ascribed that to normal turn for the worse cycle with a side of grieving. And also, not sleeping is a sure way to depression.
Other sympyoms that have been exacerbated are numbness and coldness in hands/feet, and serious cognitive impairment to the point of not understanding normal conversations.
Have had sleep problems of this caliber for three weeks. My problems center around the following: Circadian rhythm back to my old normal, i e sleep arrives at about 06 am. If I go to sleap earlier than that, with the help of my "horse tranquilizors", I wake up after 4 hours and have to take another round of most of my sleeping pills, and then get another 4h. This may sound much to some, but it makes me suicidal. My body needs min.10h or my symptoms flare up ridiculously. Even if I fall asleep at six, I only get 8 h. This did not start in conjunction with any outside event, but was still quite sudden. And a week ago, I stopped taking anything that I have only taken in 2015.
Re being suicidal. I am not being overly dramatic. The same thing happened eight years ago, when I had recently moved, didn't have a doctor, and hence no sleeping pills. My insomnia got bad enough that I had to seek psyciatric help. With the deterioration of my ME since then, I break down sooner. My safety margins are close to zero. I have had a clinical depression, and this feels much more compartmentalized. Sleep sucks, but other than that I'm normal. But when I wake up too soon after already overdosing to fall asleep at all, I feel despondent. I dream of taking 30 pills and be done with it. Not that I want to die, or would actually kill myself, but because the desperation for sleep is larger than anything.
It would seem this is not my normal cycle of deterioration. Have since learned of others who got insomnia from both Q10 and ALC. And that people with the mthfr gene mutation cannot digest folic acid. Instead, they get b12 deplored. That would explain the cognitive impairment. But regarding the insomnia, it feels like my body can't get to the D3. Could thw folic acid block uptake of D3?
The sleeping pills I take are, except for 800mg magnesium, an ibuprofen and a Tylenol: 10 mg Zolpidem, 3 mg fast acting melatonin and sometimes an additional slow release of 3 mg, 25 mg propiomazine (antihistamine), and 10 mg mianserin (precursor of mirtazapin and a tetracyclic antidepressant).
Can taking a folic acid with a mthfr mutation for 5+ months do this? Have you heard of similar occasions? Do you have any input? Would greatly appreciate any additional help! Love, Anja from Sweden"
