Really good study on MTHFR polymorphisms (poor methylation) and CFS/FM

Discussion in 'News and Research' started by ljimbo42, Jun 26, 2014.

  1. ljimbo42

    ljimbo42 Member

    Here is a study that shows that there is a much higher rate of methylation "defects" or polymorphisms in people with cfs/fm. These genetic variations are very common in the general population, but usually don't cause problems without triggers like poor diet, too much stress, multiple infections, exposure to toxins etc.

    It says that "two of the most significant effects of slow methylation are that neither the immune system or the detox system can operate properly. If methylation is slowed or blocked, infections and toxins can build up in the body." I believe that a build up of toxins causing mitochondrial dysfunction, inflammation and poor immune system function are the cause of many if not most of the symptoms of cfs/fm.

    The patients were given high dose methylfolate (the active form of folic acid) and methylcocalamin (the active form of B-12) and a few supporting supplements. The cfs/fm patients improvement ranged from 55% to 75% better than the naturopathic therapy they were getting, in just 90 days! I can't help but wonder how much more improvement they would have at 6 months and 12 months. Also how much more improvement would they have with mitochondrial support in place and treating dysbiosis and leaky gut, all consequences of poor methylation I believe.

    The doses of methylfolate they used are much higher than the RDA. I have found also that higher doses have given me a HUGE breakthrough in my health, and continue to.

    If anyone lives in the Seattle Washington area, the doctor that ran this trial is Dr. Paul Anderson, ND. He is a nathuropathic doctor that has his office in Seattle and treats cfs/fm. Here is a link to the PDF file. All the best--- Jim

    mthfr_fms_cfs_anderson_study.PDF

    Attached Files:

    Last edited: Jul 1, 2014
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  2. mbofov

    mbofov Active Member

    Jim - it looks interesting although too technical for me right now. But it's very interesting that slow methylation can cause toxin buildups and impair the immune system - my two Achilles heels! (if one can have 2 of them)

    And also very interesting that people with CFS/FM have a much higher rate of methylation polymorphisms. I wonder - do you know if Medicare pays for testing related to the MTHFR gene or for these polymorphisms?

    I am still detoxing, it's been 13 days now in a row, which is very unusual for me. Usually if something makes me detox (e.g., chlorella, apple cider vinegar, cayenne, far infrared sauna etc.) the effects last a couple of days but stop when I stop whatever is causing the detox. Well, I stopped the high dose of methylfolate probably ten days ago but the detox hasn't stopped. However, it is much less than it was a week ago. I saw my chiro yesterday who told me I was 70% through it. So I am hoping there is an end in sight so I can at least get back to my "normal" functioning. But I'm curious to see if my "normal" functioning (only able to do 3 to 4 hours of light activity a day without crashing the next day) will be improved after all this.

    Thanks for all the info!

    Mary
  3. ljimbo42

    ljimbo42 Member

    Hi Mary- I don't know if medicare pays for testing I have not had any testing done. I have experienced what you are experiencing many times. I have given it a lot of thought, but haven't found any concrete proof of this.

    I think what might be happening is when we go up on the methylfolate, methylation increases creating more glutathione. The increase in glutathione lowers the level of toxins in our blood allowing toxins from our cells to be released. Toxins are stored in cells because the body isn't able to process them because methylation is to slow.

    So new toxins are released from cells, because now there is room in the blood for them and I think this is what causes the problem. When the stored toxins are released from the cells, the amount released is higher than before. This leads to lower levels of glutathione than we had before we went up on the methylfolate, because the glutathione gets used up neutralizing the toxins and therefore the lower levels of glutathione cause more symptoms. What I did that worked, which is counter-intuitive in some respects, is to actually go up on the methylfolate.

    This brings the level of glutathione back up, relieving symptoms. I read at phoenix rising that a couple people tried it and it worked, so I tried it and it worked for me too. I found that I needed to go up about 200mcg every 2-3 days or my symptoms would return. That's how I got to such a high dose of methylfolate. I went from 1600mcg a day, which I was at for about 7-8 months, to 10mg in about 2 months.

    Even now when I feel symptoms coming back, I just go up a little, maybe 200-400mcg and they usually subside within a few hours. Does what I said about the lower glutathione levels make sense to you? One thing that you should have if you don't already is slow release niacin for overmethylation symptoms. If you feel overmethylated ie.(wired, anxious and restless) take 50 mg of a slow release tab, that will soak up the extra methyl groups and even things out.

    One more thing about the MTHFR mutations. Many people have been tested and put there test results in their signatures at the end of posts. I have read 50-60 of them in the last year, maybe more and every one of them except one or two had at least one mutation, many had more than one. Given that only about 40% of the general public has at least one mutation the difference is staggering! Or maybe not? Jim
    Last edited: Jun 29, 2014
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  4. mbofov

    mbofov Active Member

    That is certainly counter-intuitive, increasing methylfolate to counter detox symptoms brought on by a higher dose of methylfolate --- to be honest, right now, this detox has been so rough, I'm not going to chance that more folate might worsen it. I do plan, once I get back to "normal", to increase the methylfolate again and maybe play with it a bit then, if it's not too bad. Your theory makes sense but I am leery of giving it a test run right now.

    I have niacin on hand, I started taking two 500 mg. tablets about 2 months ago and it has helped me a lot with sleep. I read that it stimulates the GABA receptors which I'm sure is how it calms you down. I don't think I've experienced overmethylation but will keep that in mind. I've read that time-release niacin is actually not good for you That is the kind of niacin which has been linked to liver damage, probably in much higher doses than you are taking. But it seems that keeping the body constantly bathed in niacin, as a time release supplement would tend to do, is not good. (see e.g., http://www.livestrong.com/article/285846-slow-release-niacin-liver-damage/)

    But I find that regular niacin hits my system very quickly - I'll start flushing within 10 or 15 minutes and if I'm having trouble sleeping in the middle of the night, I'll take half a tab of niacin with my l-theanine and it calms me down and puts me to sleep. So if I did experience over methylation, I'd just take some of my regular niacin.

    Yes, that's really interesting about the high number of CFS people with MTHFR mutations --- wish we had millions for research and could direct how it was spent!

    Mary
    Last edited: Jun 27, 2014
  5. ljimbo42

    ljimbo42 Member

    Mary- Your hesitation makes perfect sense to me, I know all to well how miserable detox symptoms can be. Please don't feel rushed by any information that I offer. It's just that, information, to be used if and when you want to.

    Yes the slow release niacin can be toxic to the liver at 500 mg or above, taken daily. What is recommended for overmethylation is only 50 mg and it shouldn't need to be taken daily for overmethylation. The only reason the slow release niacin is recommended is to avoid the flushing, which is harmless, but many people don't like the way it feels, it sounds like that is not a problem for you though.

    High doses of niacin can cause problems with methylation, and it could be that by just stopping the niacin for a few days you could feel better. Here is a link (at the bottom of the page) to some info by Dr. Ben Lynch, who is one of the leaders in methylation treatment and research. He researches methylation almost every day and has a vast understanding of it.

    He has been traveling around the country giving seminars to other doctors on how to treat their patients with methylation problems. It explains what niacin does, how it can bring down overmethylation, and cause undermethylation. Don't be thrown by the size of the page, 90% of it are comments to what he wrote. lol All the best......... Jim http://mthfr.net/overmethylation-and-undermethylation-case-study/2012/06/27/
    Last edited: Jun 29, 2014
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  6. mbofov

    mbofov Active Member

    Hi Jim - actually I think I started the niacin about 3 months ago. It helps so much with my sleep, and I had no adverse reactions on starting the niacin (apart from the flushing, which now is minimal). But it didn't hurt my energy or cause a detox or anything - no bad reaction from the niacin.

    So I don't think stopping the niacin will make me feel better, and I do worry that it will hurt my sleep. The major detox reaction just started when I doubled my methylfolate overnight, a mistake of course in hindsight, should have gone slowly.

    And again, when I get back to "normal" which I am slowly doing, I will up my folate and see what happens.

    I think we each need our own chemist and laboratory to help us navigate through these confusing murky waters of healing! (hopefully we are healing)

    Mary
  7. ljimbo42

    ljimbo42 Member

    Mary- Treating methylation is very much trial and error. Even Dr. Lynch says that it is trial and error and he has been treating people for years. As far as healing goes, I feel consistently better than I have in many years. Even mentally, I feel much calmer and happier, so there is hope. Jim
    Last edited: Jun 29, 2014
  8. mbofov

    mbofov Active Member

    Thanks, Jim. I am going to be increasing my folate within the next couple of days. The detox has almost completely stopped. So this time if it starts up again, at least I will know what is going on and how to deal with it. But I am going to go slower with increasing the folate.

    I really appreciate all your input! I never considered increasing my folate until I read your post.

    Mary
  9. ljimbo42

    ljimbo42 Member

    Your welcome Mary. I'm reminded of what Dr. Amy Yasko says, she does a lot of work with methylation. She says "it's a marathon not a sprint", which really is true. It's a marathon well worth running in my opinion though. :) Jim
  10. mbofov

    mbofov Active Member

    Hi Jim - I don't know if you'll see this but wanted to let you know I decided to cut way back on the niacin just in case it was a factor in my fatigue and difficulty detoxing as you suggested. I think I had pretty much gotten over the detoxing but was still extra tired, it was hard to do anything. So I remembered what you wrote and also thought about how niacin stimulates the GABA receptors (which is why it helps with sleep so much), but too much GABA of course can make you tired.

    So I skipped my morning dose yesterday and by afternoon felt better than I had since I first started this detox merry-go-round 2-1/2 weeks ago. I took 1/2 a tablet with dinner (250 mg.) and then 125 mg. in the middle of the night, and went right back to sleep instead of being awake for an hour or more. I feel okay this a.m., and may try cutting the dose some more - I think there will be a fine line where it stops helping with sleep and I want to find that line.

    Anyways, just wanted to let you know. I still have not increased my folate beyond my original dose as I wanted to get back to "normal" first, and I'm almost there. I was skeptical about cutting the niacin because it didn't make me tired for the first couple of months of taking it, only after I started that awful detox.

    Anyways, thanks again for sharing all your knowledge!

    Mary
  11. ljimbo42

    ljimbo42 Member

    Thanks Mary- Sounds like your on the right track, I'm glad to hear you're feeling better. I usually check in on this forum every day or two, so I stay pretty connected. I started a 10:1 extract of burdock root a little over a week ago and slowly moved up to 350mg/day, which is equal to 3,500 mg of the powdered root.

    It has given me more energy and I am able to think a little clearer. As I mentioned in another post burdock root helps clear the body of toxins. I am convinced that toxins cause many cfs/fm symptoms. Anyway, good luck on your way forward! All the best- Jim
  12. Going to read the study later today- in class now, haha. Love the information and your thoughts Jimbo.
    Poor methylation seems to be the/a cause of so much dysfunction.-->Getting methylation online has potential for great regeneration. Exciting!!

    I've got comt, mthfr, and mao mutations. I'm trying hosts of things to optimize my methylation.
    Niacin (Ben Lynch's Seeking Health brand= nicontinic acid, extended release) seems to help tremendously to improve my basal calmness. L-methyfolate by itself caused extreme energy with a manageable but not ideal level of anxiety. Going to re-introduce methylofate now that have niacin to combat side-effects.

    Interesting that high doses have produced profound results for you. I'm 21 and fairly healthy, so will probably try higher and higher doses. Blood tests on the way -- soon as I have the dinero!!

    All the best and looking forward to everybody's learning/progress,
    Nick