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High folate levels

Discussion in 'General ME/CFS Discussion' started by DKnickerbocker, Feb 7, 2014.

  1. DKnickerbocker

    DKnickerbocker

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    Got a question about high folate levels in my last blood test. I have been dx with MTHFR 2 copies of C677T
    I had some really bad reactions to taking b vitamins prior to my dx… That was 2 months ago.

    I recently had some vitamin blood levels done… my Hemactocrit was 48.3 (38.5-50) and my Folate RBC was 922 (> 280) My b6 was also 15 with a top range of 21 . Now my homocysteine was high normal 9.2 with a top range of 11.4

    What is interesting is that since my b vitamin episode in november I have not felt well and subsequently lost 15 lbs in the past month and a half… just not hungry… and I'm not supplementing and am ashamed to say I'm not eating a lot of high folate foods….
    I know folks with MTHFR do't convert folic acid into folate well , but it is possible that these b vitamins have built up in my system…. I always thought they were water soluble and we just would pee them out. Some of my symptoms after the B-overdose are constant with a toxic dose of b6… tingling, burning of the skin… neuropathy like symptoms…

    I read somewhere that they can build up in your blood…. If that is the case how to I get them out…??? I actually thought about doing a blood donation to clean my symptom… don't know if that would work..

    Any thoughts would be appreciated

    Thanks !

    Mike
     
  2. Crux

    Crux Senior Member

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    Hi Mike;

    This has happened to me too. One possibility is an overgrowth of folate producing bacteria in the gut. This can happen in the small intestine too. ( SIBO)

    There are many microbes in the gut that can produce B vitamins, but too many can become toxic, especially to the nerves. Along with that, lactic acid, and other acids are produced, causing nerve pain. ( This has been happening to me recently.)

    I don't know if you've been having any gut symptoms, other than a reaction to taking B vitamins, but I've read that some people with dysbiosis or SIBO may not have noticable IBS symptoms.

    Hope you figure it out.
     
  3. DKnickerbocker

    DKnickerbocker

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    Hi Crux,
    That is interesting… never would have thought of gut issues… But now that you bring that up… I had a second attack 2 weeks ago… I took one multi-vitamin and ate 2 protein bars over a 2 day period…. Not only did I get a really bad attack of pins and needles and burning, but right after that I got a bad case of yellow burning diarrhea for several days… I read somewhere that taking metamucil could help…. Not only did it cure the diarrhea but when I take the metamucil I seems to help with the nuerpathy and burning… but only temporarily…. What is the treatment for dysbiosis or SIBO ?
     
  4. Valentijn

    Valentijn Activity Level: 3

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    @DKnickerbocker - It's important to know which form of folate they tested for. If it was folic acid, then it's showing the levels of a form which is quite useless for you. If they don't specify the form, then it's probably folic acid.

    That would get high because you can't convert it into methylfolate. Hence it would be a very good idea to avoid folic acid, which also might be present as an additive in cereals, breads, etc (depending on where you live). And you probably need to supplement with methylfolate (not folic acid), as you aren't a big fan of the veggies.
     
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  5. adreno

    adreno 3% neanderthal

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    Sounds like B12 deficiency (methyl trap).
     
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  6. DKnickerbocker

    DKnickerbocker

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    Not sure about the folate testing other than what I listed above…. The first attack happened prior to my MTHFR dx back in November. Once diagnosed I stopped the regular supplements and switched to methyl b12 and folate…but I did not do well with those…had agitation from them… still waiting for my 23adme tests results to come back. I stopped the methyl bs about a month ago…. it wasn't until I took that one multi-vitamin and ate those 2 fortified protein bars that I got the second attack… which included the yellow burning diarrhea… that has stopped but my body burning is worse since then…

    it seems more than neuropathic pain…. I rubbed my eye the other day and my tears really stung my face… it felt like I had a chemical burn on my face for 2-3 days… also the burning comes and goes… and again is usually relieved when I take metamucil powder in water… so maybe something is being moved out of my intestinal track… but again… only temporarily

    b12 is mid range but I know it is only testing the inactive b12… I need to read more about methyl trap. I'm in regular contact with the MTHFR SUPPORT folks as well…

    I just want to neutralize whatever has happened to me…. unlike most folks on this site… I had no health issues…other than some high estrogen levels and low T levels prior to November when I had the first attack…after starting Etrium powder which was proscribed by a hormone doc (and MD)
     
  7. Crux

    Crux Senior Member

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    There are many types of treatments and recommended diets for dysbiosis and SIBO. It can get really complicated.

    http://www.slideshare.net/drrinde/sibo-grand-rounds-presentation-2011-best

    http://www.merckmanuals.com/profess...tion_syndromes/overview_of_malabsorption.html

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2890937/

    Even the symptoms vary per individual. ( For instance, some people present with diarrhea, others, constipation, or alternating.)
    Many will have deficiencies of B12, and fat soluble vitamins. Some can have normal, low, or elevated folate. :confused:

    There can be low or high lactate.

    The choices for testing can be somewhat helpful. The hydrogen breath test is used for SIBO. ( It can be inconclusive too.)

    There are many types of stool tests to choose from...

    The treatments for these conditions usually involves antibiotics, but, herbs can be used.

    Personally, I haven't been diagnosed with SIBO, but I'm treating myself with oil of oregano, and peppermint oil. ( They can reduce bacterial populations... feeling better now.)

    For the excess lactic acid symptoms, I'm taking some potassium bicarbonate, and sodium bicarbonate. ( My symptoms have been numbness/tingling pain in the hip and hand, along with generalized inflammation. It's helping.)

    I have B12 deficiency, and take high dosages. It has relieved the neuropathy in the past. I was surprised to have it return. I realize there can be more than one cause for elevated folate and neuropathy.
     
  8. DKnickerbocker

    DKnickerbocker

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    Just wanted to ask a bit more about the Whole "Methyl Trapp" possibility. I'm trying to read on this and it is very confusing....

    Prior to november (and my MTHFR dx) I had no symptoms and could tolerate regular B vitamins just fine. I regularly took a b-12, B-complex and Multi-vitiamin . It was not until I added the Estruim powder (to help clear estrogen) that it triggered the tingling and swelling... some sort of auto-immune or inflammatory reaction. Estruim is loaded with B- vitamins... to my system likely was over-loaded or it kicked off something.

    The tingling and swelling eventually subsided... Even After I started the methyl Bs I did not have a recurrance. Only symptoms were periodic anxiety/agitation which I used Niacin for and cut my Methyl doseage in half... but I stopped everything in early January.... It was after stopping everything I noticed an increase in the tingling and burning... Then after my second episode (after taking the mluti-vitamin) all hell broke loose....

    The burning/acid sensation got worse.... stinging eyes....yellow diarrhea, ect During that attack my ammonia levels also shot up as did my liver enzymes (slightly)

    Anyone know How I cannuetralize this.... feel like something is built up in my body and I can't get rid of it.
     
    Last edited: Feb 8, 2014
  9. DKnickerbocker

    DKnickerbocker

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    Thanks for the suggestions... I did the a DNA based stool test a few weeks ago and am waiting for the results... hopefully that will show something....

    Again just not sure if this is more of a Methyl trapping or gut issues.... It is all very confusing... I just want to get this symptoms under control...!
     
  10. adreno

    adreno 3% neanderthal

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    The simple explanation of methyl trap is that you need enough B12 to utilize folate. If not, your folate will accumulate and you will have "trapped" methyl groups (your methylation cycle won't run).
     
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  11. DKnickerbocker

    DKnickerbocker

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    Hi Adreno, Well I don't do well with Methyl b12 (the MTHFR support folks are betting I have COMT) They are also telling me not to revist the methylation until my gut health is checked and they look for any possible COMT and CBS pathway issues.... I know there are other forms of b-12 ; the hydroxy and adeno b-12 , but would those help..."untrap" the methyl groups or do I need methyl b12 that to happen ?
     
  12. adreno

    adreno 3% neanderthal

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    I would try hydroxy in that case. It should work, too.
     
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  13. skwag

    skwag

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    Estrium seems to contain NAC, and sometimes whey as far as I can tell. Freddd was part of a study years ago with 9 others that showed very negative effects from taking glutathione or glutathione precursers. They believe increased glutathione combines with methyb12 and is flushed from the body. It's something to consider since NAC and whey are glutathione precursers. The 10 participants in the study were all on methylation protocols and had seen positive results up until this trial.

    The flushing of B12 would then result in methyltrap, which is the flushing of methylfolate from your cells. High blood serum folate would then be expected. So the lore goes.

    Whether all this applies to you I don't know, but if I were you I would get some high quality b12. Enzymatic Therapy B12 Infusion is recommended.
     
  14. DKnickerbocker

    DKnickerbocker

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    Hi Skwag,

    The Estrium I took back in November was not the Estrium Whey, bu rather just the regular powder designed to clear estrogen… This was before my MTHFR dx… at the time I tolerated b vitamins fine… problem was I was taking b-12, b-complex and a multi when I started the Estrium… The acute symptoms started after that… Now I can't tolerate even a multi vitamin or any fortified foods…. after my dx I was started on methyl b12 and methyl folate… but got really anxious/agitated… even with using the niacin…. Things have gotten worse since stopping the Methyl bs in January…
    In This all just started in early November…It's like roller coaster I can't get off of….

    Oh BTW I followed Adreno's recommendation and tried the hydroxy b12…. just half a tab…. felt terrible a few hours later… light headed, tightness in my chest…. I don't think I can do any B vitamins at this point without side effects
     
  15. skwag

    skwag

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    Are you taking any potassium? I would try taking 3x99mg tablets with a glass of water and see if the symptoms improve. You should know in half an hour if it helps.

    What kind of protein bar?
     
  16. DKnickerbocker

    DKnickerbocker

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    symptoms wore off after a couple of hours… felt pretty rough for a bit though…. kind of scary

    they were just protein bars I bought a work… can't remember the name... both were fortified with vitamins though…
    I think it was the combo of them and the multivitamin… I could feel it building up over a day or so… the tingling sensation
     

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