MTHFR Gene Mutation

[IThinkImInTorture]

Hello RLS community!

I know you are busy but I found relief for my RLS recently so I wanted to share and see if others were also enjoying a similar reprieve.

I had my Genomind Assay done in 2018. I learned I have the MTHFR gene mutation that doesn't allow the liver to break down folate (B9) to methylated folate, the form of folate the body can use. To treat this I have been taking 2 x 1000mg capsules of methylated folate and I sleep soundly waking up before the alarm. My mood is less reactive and my RLS symptoms are significantly reduced more than taking melatonin and/or Magnesium Glycinate. My legs, calves and thights have a slightly numb sensation after taking it and even in the morning.

Women are more likely to have RLS and a folate deficiency. Hmmm.....

I have my oldest 15 year old daughter taking 1000mg of mythlated folate in an informal experiment. She notes she sleeps better too. Perhaps, there is a genetic similarity between she and I?

I wonder if this gene mutation is also formally correlated with nutrient deficiency of Folate and RLS? The simplest answer is usually the best answer, unless the AMA squashes it to push opiates.

-------------------------------------------------------------------------------------------------------

Methylated Folate Treatment
https://smartq.pureforyou.com/products/ ... olate-1000

--------------------------------------------------------------------------------------------------------

MTHFR Gene Mutation Snippet from my Genomind Assay showing the mutation.

Genomind_Assay.pdf

MTHFR Gene Mutation

(53.3 KiB) Downloaded 93 times

Methylenetetrahydro-
folate Reductase

(MTHFR)
C677T:
T/T
A1298C:
A/A
[Low activity]
--------------------------------------------------------------------------------------------------------

Benefits of Folic Acid
https://www.mayoclinic.org/drugs-supple ... t-20364625

[XenMan]

Well done on your success.

There is a large list of supplements that help people, and I remember foliate being on the list. I'm sure that I tried it at some time, but not the MTHF version. I may give it another go next time I'm doing a supplements run.

There appears to be wide range of situations and conditions that create a symptom of 'restless legs' and this mutation may leave some vulnerable to a cascade effect leading to the condition or symptoms.

[Rustsmith]

I seem to remember some mention of the MTHFR mutation on this board in the past. If you do a search, you will probably find it.

When I had my genes done for genealogy, I checked the MTHFR gene and found that I do not have the mutation. That doesn't mean anything beyond the fact that I didn't pursue the idea any further last time because of that.

[IThinkImInTorture]

I seem to remember some mention of the MTHFR mutation on this board in the past. If you do a search, you will probably find it.

When I had my genes done for genealogy, I checked the MTHFR gene and found that I do not have the mutation. That doesn't mean anything beyond the fact that I didn't pursue the idea any further last time because of that.

That is good data. It may be a cocktail of triggers when combined make RLS. I may have fixed the folate deficiency but wasn't deficient of another coincidentally at the same time. Plus mapping the human genome is one thing but decoded it is another completely.

I wonder if we have demographics of RLS?

[IThinkImInTorture]

I seem to remember some mention of the MTHFR mutation on this board in the past. If you do a search, you will probably find it.

When I had my genes done for genealogy, I checked the MTHFR gene and found that I do not have the mutation. That doesn't mean anything beyond the fact that I didn't pursue the idea any further last time because of that.

It was probably me. Money is being spent on "research" but "research" could have more fervor behind it.

[Rustsmith]

I wonder if we have demographics of RLS?

Generally, RLS tends to be found most often in those of European ancestry, especially northern European. It occurs in Asian populations, but at a much lower rate. It is almost unknown in ancestral African populations, but they don't know whether this is a matter of genetics or insufficient RLS data from Africa (other than the European descendants in South Africa) to draw any conclusions. As for native American, Pacific Islanders, etc., I have never seen anything mentioned, so it is probably the same issue as Africa, too little data.

[Oozz]

Hello RLS community!

I know you are busy but I found relief for my RLS recently so I wanted to share and see if others were also enjoying a similar reprieve.

I had my Genomind Assay done in 2018. I learned I have the MTHFR gene mutation that doesn't allow the liver to break down folate (B9) to methylated folate, the form of folate the body can use. To treat this I have been taking 2 x 1000mg capsules of methylated folate and I sleep soundly waking up before the alarm. My mood is less reactive and my RLS symptoms are significantly reduced more than taking melatonin and/or Magnesium Glycinate. My legs, calves and thights have a slightly numb sensation after taking it and even in the morning.

Women are more likely to have RLS and a folate deficiency. Hmmm.....

I have my oldest 15 year old daughter taking 1000mg of mythlated folate in an informal experiment. She notes she sleeps better too. Perhaps, there is a genetic similarity between she and I?

I wonder if this gene mutation is also formally correlated with nutrient deficiency of Folate and RLS? The simplest answer is usually the best answer, unless the AMA squashes it to push opiates.

-------------------------------------------------------------------------------------------------------

Methylated Folate Treatment
https://smartq.pureforyou.com/products/ ... olate-1000

--------------------------------------------------------------------------------------------------------

MTHFR Gene Mutation Snippet from my Genomind Assay showing the mutation.

Genomind_Assay.pdf

Methylenetetrahydro-
folate Reductase

(MTHFR)
C677T:
T/T
A1298C:
A/A
[Low activity]
--------------------------------------------------------------------------------------------------------

Benefits of Folic Acid
https://www.mayoclinic.org/drugs-supple ... t-20364625

Prior to doing this you get tested for any vitamin deficiencies/excess? Was there anything abnormal? Did you get levels check after? How are they?

[IThinkImInTorture]

Hello RLS community!

I know you are busy but I found relief for my RLS recently so I wanted to share and see if others were also enjoying a similar reprieve.

I had my Genomind Assay done in 2018. I learned I have the MTHFR gene mutation that doesn't allow the liver to break down folate (B9) to methylated folate, the form of folate the body can use. To treat this I have been taking 2 x 1000mg capsules of methylated folate and I sleep soundly waking up before the alarm. My mood is less reactive and my RLS symptoms are significantly reduced more than taking melatonin and/or Magnesium Glycinate. My legs, calves and thights have a slightly numb sensation after taking it and even in the morning.

Women are more likely to have RLS and a folate deficiency. Hmmm.....

I have my oldest 15 year old daughter taking 1000mg of mythlated folate in an informal experiment. She notes she sleeps better too. Perhaps, there is a genetic similarity between she and I?

I wonder if this gene mutation is also formally correlated with nutrient deficiency of Folate and RLS? The simplest answer is usually the best answer, unless the AMA squashes it to push opiates.

-------------------------------------------------------------------------------------------------------

Methylated Folate Treatment
https://smartq.pureforyou.com/products/ ... olate-1000

--------------------------------------------------------------------------------------------------------

MTHFR Gene Mutation Snippet from my Genomind Assay showing the mutation.

Genomind_Assay.pdf

Methylenetetrahydro-
folate Reductase

(MTHFR)
C677T:
T/T
A1298C:
A/A
[Low activity]
--------------------------------------------------------------------------------------------------------

Benefits of Folic Acid
https://www.mayoclinic.org/drugs-supple ... t-20364625

Prior to doing this you get tested for any vitamin deficiencies/excess? Was there anything abnormal? Did you get levels check after? How are they?

No, I have not. I am not sure about the validity of hair or serum tests for nutrient deficiency. Know I reputable lab?

[Frunobulax]

No, I have not. I am not sure about the validity of hair or serum tests for nutrient deficiency.

Serum is often unreliable. because it's possible that you have decent serum values (for example of vitamin B12) but the intracellular levels (the one that really matter) are low. Also there is no one-size-fits-it-all approach to get around that, but it depends on the nutritient. For vitamin B6 status you need an intracellular measurement. For vitamin B12 you can test something called holo-TC, but you can also take methylmalonic acid and if that's high then you're B12 deficient.

As for hair, I believe the problem is that each lab has its own methods and normal values. I've seen reports where people sent hair from one person to different labs and got quite different results.

[IThinkImInTorture]

It has been two weeks and I feel so stable. I sleep so well I get up hours before the sun rises. My mood is in control and I don't react like others predict based upon historically knowing how I behave. My oldest daughter, 15, is taking it and now she talks to me and gets up early without issue. Note: The first two weeks you are sleepy and a tad irritable as you are purging toxins but after two weeks I am not turning back. I am stronger. I am hungry more which means my metabolism is returning to a faster burning rate. I started just taking methylated folate but now I take a methylated folate plus methylated B6 and B12 with another compound that removes excess homocysteine. I see Amy has an article on RLS yet she offers a methylated multi in the article instead of the Methyl Support recommended with the article regarding the MTHFR gene mutation requiring methylation supplementation. I wonder If I would feel even better with the multi? It is not clear how long you have to supplement until you reach homeostasis but I'll just keep taking this for at least a year constantly then take a break. Has anyone else experienced methylation supplementation and a reduction in RLS symptoms?

https://www.amymyersmd.com/article/caus ... -syndrome/

[Oozz]

It has been two weeks and I feel so stable. I sleep so well I get up hours before the sun rises. My mood is in control and I don't react like others predict based upon historically knowing how I behave. My oldest daughter, 15, is taking it and now she talks to me and gets up early without issue. Note: The first two weeks you are sleepy and a tad irritable as you are purging toxins but after two weeks I am not turning back. I am stronger. I am hungry more which means my metabolism is returning to a faster burning rate. I started just taking methylated folate but now I take a methylated folate plus methylated B6 and B12 with another compound that removes excess homocysteine. I see Amy has an article on RLS yet she offers a methylated multi in the article instead of the Methyl Support recommended with the article regarding the MTHFR gene mutation requiring methylation supplementation. I wonder If I would feel even better with the multi? It is not clear how long you have to supplement until you reach homeostasis but I'll just keep taking this for at least a year constantly then take a break. Has anyone else experienced methylation supplementation and a reduction in RLS symptoms?

https://www.amymyersmd.com/article/caus ... -syndrome/

So, do you not have RLS anymore? Your original post indicated you were taking melatonin and magnesium to treat your RLS, both of which aren’t very useful for RLS; the melatonin actually being known to exacerbate RLS. Are you sure you have RLS to begin with?

[Frunobulax]

It has been two weeks and I feel so stable. [...] Has anyone else experienced methylation supplementation and a reduction in RLS symptoms?

So, do you not have RLS anymore? Your original post indicated you were taking melatonin and magnesium to treat your RLS, both of which aren’t very useful for RLS; the melatonin actually being known to exacerbate RLS. Are you sure you have RLS to begin with?

Magnesium is a counteragent to high oxalate levels, which has been conjectured to be a possible cause for RLS. A B12 deficiency is well known to be among the causes for RLS, which might be resolved by the intake of folate (as B12 is bioactive forms).

Naturally we can't diagnose anything remotely, but I wouldn't be surprised if both magnesium and folate would help some of us. For the folate, a strong indication would be bloodwork showing a B12 deficiency before supplementation, for example low Holo-TC or high methylmalonic acid, and better values after supplementation. For oxalates, an organic acids test would reveal issues, but this is expensive. But I wouldn't be surprised if low serum magnesium would be one indicator for high oxalates -- I had low magnesium despite supplementing in generous amounts (800mg a day), but ever since going on a low-oxalate diet my magnesium levels are perfect.

Unfortunately, 2 weeks is too short a time. I felt like IThinkImInTorture after starting B12 supplementation -- one week was pure heaven (free of any RLS symptoms, while remaining on my opioid medication), and another good week. But then things went south again and my RLS returned. I believe it wasn't as as bad as before, but it's hard to tell as there was a lot of fluctuation in my symptoms at the time (6 months after augmenting, 6 months in which I was on an odyssee of different drugs).

[Oozz]

It has been two weeks and I feel so stable. [...] Has anyone else experienced methylation supplementation and a reduction in RLS symptoms?

So, do you not have RLS anymore? Your original post indicated you were taking melatonin and magnesium to treat your RLS, both of which aren’t very useful for RLS; the melatonin actually being known to exacerbate RLS. Are you sure you have RLS to begin with?

Unfortunately, 2 weeks is too short a time. I felt like IThinkImInTorture after starting B12 supplementation -- one week was pure heaven (free of any RLS symptoms, while remaining on my opioid medication), and another good week. But then things went south again and my RLS returned. I believe it wasn't as as bad as before, but it's hard to tell as there was a lot of fluctuation in my symptoms at the time (6 months after augmenting, 6 months in which I was on an odyssee of different drugs).

This sound like a placebo effect.

Excitement over new possible treatment > s/t increases endorphin and dopamine > it works! > s/t increase in b endorphin & dopamine > initial excitement dissipate > endorphin & dopamine returns to mean > stops working

what do you think? I largely believe the endogenous opioid system and dopamine system are the primary cause for myself and many other men.

[Frunobulax]

This sound like a placebo effect.

Excitement over new possible treatment > s/t increases endorphin and dopamine > it works! > s/t increase in b endorphin & dopamine > initial excitement dissipate > endorphin & dopamine returns to mean > stops working

Please tell me your crystal ball supplier, I also need one that allows me to diagnose other people with authority from just a few lines in a forum while knowing squat about the circumstances.

In that year I tried probably 20 substances from the "what's worked" list in this forum. B12 was the only one who showed any effect, the others did nothing at all. Before the B12 I walked every effing night, got 3h sleep in good nights and daytime I fell asleep as soon as I sat down for a minute (and woke up 30 seconds later from dancing legs). 24h after taking B12 I slept soundly for 7 hours and woke up refreshed, and slept 8-9 hours for the next few nights without any RLS symptoms. Placebo effect, really?

[Oozz]

Not sure why you’re offended, I offered my response as a question. Hence the - “what do you think?”