Study Suggests Higher B-12 and Folate Levels Needed in ME/CFS (Take the Poll)

Have Your MTHFR Mutations Been Tested and If So - Did It Help?

  • Never been tested

    Votes: 56 66.7%
  • No Polymorphisms found

    Votes: 4 4.8%
  • ME/CFS patient - Polymorphisms found - treatment regimen based on them - helped a lot

    Votes: 2 2.4%
  • ME/CFS patient - Polymorphisms found - treatment regimen based on them - helped moderate

    Votes: 4 4.8%
  • ME/CFS patient -Polymorphisms found - treatment regimen based on them - helped somewhat

    Votes: 15 17.9%
  • ME/CFS patient - Polymorphisms found - treatment regimen based on them - made things worse

    Votes: 3 3.6%
  • Fibromyalgia patient - Polymorphisms found - treatment regimen based on them - helped alot

    Votes: 0 0.0%
  • Fibromyalgia patient - Polymorphisms found - treatment regimen based on them - helped moderately

    Votes: 2 2.4%
  • Fibromyalgia patient - Polymorphisms found - treatment regimen based on them provided little/no help

    Votes: 0 0.0%
  • Fibromyalgia - Polymorphisms found - treatment regimen based on them - made things worse

    Votes: 0 0.0%

  • Total voters
    84

Popokilani

New Member
Hi, I have heard from a highly reliable source that sub lingual forms of B12 are just as effective as injections. I take two products from ProHealth: B-12 Extreme and Hydroxocobalamin Extreme. I have not been tested. Fyi, I am meeting with success with this form of B12 supplementing, folate, and AHCC (Immpower 3 caps 2 x a day)....in addition to everything else I take. I am a 35+ year patient, and am doing consistently well with PEM for the first time, now able to swim every other day for 30-45 minutes!
 

TigerLilea

Well-Known Member
I've never been tested but I started an aggressive vitamin b12 and folate regimen on my own and it has been the most helpful treatment to date...by far. It helped my sleep and fatigue immensely.
Molly, would you mind sharing what form of B12 you are taking, and, also, how B12 and folate that you take each day. I'm still looking for something that will help with my fatigue, even though I do sleep reasonably well each night. :yawn:
 

Issie

Well-Known Member
I wonder if that's why when I became a vegan everything went downhill so fast... Before I normally ate meat everyday which probably means a lot of B12, and then suddenly I became vegan (no eggs and milk too) so I totally cut any source of B12.
I even ask a nutricionist about supplementing B12 but she said it takes a lot of time for the body to run out of it... My decline was in something like a month after becoming vegan.
Vegans need to supplement B12. I use Methyl sublingual B 12. We also need iodine - I use kelp. And most need Vit D 3.

Just a note on MTHFR and methylation. There are other things in the process that you can have a mutation on. If you don't address those first - it could make you very sick. I had to work on other things before I could add the B12. And even though I have issues with MTHFR - I don't supplement with folate. Some of us don't need it to start with.

Yes your serum B12 levels can be high and that may indicate that it isn't going into the cells properly. The docs that are helping with methylation say a tiny homeopathic amount of the mineral Lithium will cause the B12 to go into the cells. They suggest licking a fork prong and dipping it into the powder and gradually increasing that way. They also do not recommend mega doses of the supplements when the methylation process is faulty. They have a certain order of addressing the mutations and if you bypass that order - you could have a very poor response. BTW, shots made me sick too.

Issie
 

Deirdre

New Member
Hi, I have heard from a highly reliable source that sub lingual forms of B12 are just as effective as injections.
Hi Popokilani--

Sublingual B12 is absorbed at most 10% (compared to a shot which is 100%). Some say the percentage is even less than that. However, sublingual is MUCH better than oral dosing, where only a very tiny percentage of the b12 will make it through.

Transdermal delivery is a possible way of getting close to a shot's level of effectiveness. I know some people who are experimenting with this, and they say they are getting very good results. They feel that they are getting around 80% absorbtion from transdermal delivery.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Two thirds of people have not had their polymorphisms checked. I'm surprised but I don't know why - I'm in that group.
 

Folk

Well-Known Member
Two thirds of people have not had their polymorphisms checked. I'm surprised but I don't know why - I'm in that group.
It's not a common test. Here the MTHFR isn't cover by the insurance unless the doctor have a good explanation and it's 600 reais (something about 200 dollars).

The only time I got there with a requisition to do the exam was from a nutricionist and it was I who asked him to give me. But of couse they didn't accept.
:\
 

Issie

Well-Known Member
Cheapest way to have MTHFR checked is through 23&me. Then download your info into Promethesis. Then sort it out based on your results. You can figure it out yourself. There may be other programs to download into now. But I had help from a very knowledgeable friend and that's how we got mine sorted. It's a continuous learning field though. I still have a lot to learn.
 

Folk

Well-Known Member
Cheapest way to have MTHFR checked is through 23&me. Then download your info into Promethesis. Then sort it out based on your results. You can figure it out yourself. There may be other programs to download into now. But I had help from a very knowledgeable friend and that's how we got mine sorted. It's a continuous learning field though. I still have a lot to learn.
23andme is prohibited in Brazil. hooray!

(just out of curiosity, canibalism isn't prohibited by law :stop:)
 

Issie

Well-Known Member
23andme is prohibited in Brazil. hooray!

(just out of curiosity, canibalism isn't prohibited by law :stop:)
Why is 23&me banned? They just got a release to be able to start supplying more info on their test again.

Issie
 
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Linda B

Active Member
I may throw another spanner in the works here....everyone is focussed on the b12 however we should also look at the folic acid supplementation which (from other sites I have found) can be implicated in preventing uptake of folate naturally. The supposed supplement should be folinic acid. Anyone heard the same thing?
 

Issie

Well-Known Member
I may throw another spanner in the works here....everyone is focussed on the b12 however we should also look at the folic acid supplementation which (from other sites I have found) can be implicated in preventing uptake of folate naturally. The supposed supplement should be folinic acid. Anyone heard the same thing?
http://nancymullanmd.com/dr-amys-folate-folic-acid/

Here is what Dr Amy and Dr Mullan have to say about it. You can see from this explanation of just folate, there is a lot to learn. Done wrong and you could make yourself more unwell.

Issie
 

Danuta

New Member
Molly, would you mind sharing what form of B12 you are taking, and, also, how B12 and folate that you take each day. I'm still looking for something that will help with my fatigue, even though I do sleep reasonably well each night. :yawn:
I would like to know it too as getting very desperate! Have heard of Folate and methyl B12 in high dosage form but my GP cannot prescribe it as she doesn't have a data on a dose. I made a phone consultation appointment with the doctor in Adelaide who wrote an article about it but it's not till mid June and the consult cost is very high for me.
 

Danuta

New Member
I may throw another spanner in the works here....everyone is focussed on the b12 however we should also look at the folic acid supplementation which (from other sites I have found) can be implicated in preventing uptake of folate naturally. The supposed supplement should be folinic acid. Anyone heard the same thing?
 

laureano

Member
I actually have HIGH levels of b12 in my body, measured at three or four points in my life. What could this mean? are my body systems not being able to use b12 so it builds up in blood? any ideas?
 

Issie

Well-Known Member
I actually have HIGH levels of b12 in my body, measured at three or four points in my life. What could this mean? are my body systems not being able to use b12 so it builds up in blood? any ideas?
That's my understanding.
Until I started using the methyl form of both B12 and folate (and reading labels to make sure I wasn't having folic acid in anything), I didn't tell much difference. But having those along with R5P is making a difference. I also find P5P at night along with zinc (and reading labels to not have copper) helps with my sleep and I am now having dreams.
Issie
 

MollyO

New Member
I would like to know it too as getting very desperate! Have heard of Folate and methyl B12 in high dosage form but my GP cannot prescribe it as she doesn't have a data on a dose. I made a phone consultation appointment with the doctor in Adelaide who wrote an article about it but it's not till mid June and the consult cost is very high for me.
Hello,

I started with Solgar brand Methylcobalamin at 1000mcg, between my gums and cheek to slowly dissolve over at least 45 min. I also did the same with Source Naturals Dibencozide and Solgar Folate as metafolin (1000 mcg). I was able to order all of these from Amazon but several online retailers carry them. I would purposely start at a low dose because if you are truly low you could have some initially strong symptoms including a buzzy or jittery feeling and a headache. If this does happen and you can't handle the symptoms you can remove the vitamin from your mouth and it should subside. Then you can go to an even lower dose and work your way up. Be sure to get plenty of electrolytes, especially potassium (coconut water, bananas, Gatorade). If you tolerate it well, you can do this once in the morning and once in the afternoon but not later than 3 to 4pm or it may affect your sleep. Because so many of our foods are supplemented with folic acid and because I have the MTHFR mutation, I found that I needed to drastically increase my amount of folate (metafolin). I ordered a brand on line called Methyl Pro that has large doses of metafolin. Once my levels evened out, several months later, I was able to just use MethylPro's B Complex with 5mg folate.
 

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