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B12 for probably non-ME/CFS symptoms

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by garyfritz, Apr 29, 2014.

  1. garyfritz

    garyfritz Senior Member

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    Hi all,

    I don't think I have ME/CFS (I hope not!) but I found this forum while searching for information about B12. This seems to be the motherlode of knowledge about B12 and related nutrients, so maybe someone here can shed some light on my situation.

    Background: 57 yr old male

    I have nearly all symptoms of hypothyroidism except weight gain -- my weight hasn't fluctuated more than +/- 4-5 lbs in the last 40+ years. I'm pretty thin, 6'4" and 175 lbs. Other than that I have low energy, low body temp, cold sensitivity (though that seems a bit better lately), dry/flaky skin, brittle nails, high cholesterol, thinning hair, low libido, the works. My TSH/etc are borderline low, but I never responded to any of several thyroid supplements (Synthroid, Westhroid, etc).

    I show many characteristics of ADD, though not the hyperactive flavor. (Difficulty focusing on tasks, distractibility, low productivity, etc.) So do my mother, probably her father, and my two teenage sons.

    I've had occasional Restless Legs Syndrome (RLS) since I was a kid. It has never been debilitating, just maddening.

    About 20-25 yrs ago I started having trouble sleeping, due to agitation and muscular twitching/jerking. At first I could control it with calcium/magnesium, but over time it got worse and the cal/mag didn't help nearly as much. At one point I experimented with several forms of high-dose magnesium (mostly topical), but that didn't help a lot.

    About 5-7 yrs ago my MD did a broad-spectrum blood test and determined I was low on L-glutamine. I started taking L-glut and slept like a baby! For about a week. Then it was back to the twitching. My then-wife was complaining that I kicked and jerked in my sleep.

    By last summer it was getting really bad. I was feeling tension/agitation even during the day. During the day, and especially in the middle of the night, I often felt like I needed to crawl out of my skin. It sometimes felt like the surface muscles on my thigh were vibrating, almost humming, though I doubt you could have felt it externally. But between that and the I-can't-stand-my-body feelings it was definitely crazy-making. If fingernails-on-a-chalkboard drive you insane, imagine that feeling for hours at a time. Plus in the night my muscles were jerking like I was getting poked with a cattle prod. Every night I was thrashing and twitching for 4-5 hours of nightmarish torment. It really, really sucked.

    While trying various things, my naturopath had me start taking B12. I started taking Readisorb B12 last fall, and suddenly -- I slept through the night! Night after night, for six months!!! It was miraculous. I hadn't slept that well in 20 years.

    I took a vacation in Mexico in early March, and I didn't sleep great there. Then when I came back the twitching/agitation started coming back. Eventually I realized I had accidentally omitted the L-glutamine from my nightly regimen for a few weeks. I started on that again and that helped. Meanwhile I had also switched to a cheaper B12 that I could buy at the local Whole Foods (still methyl B12). A week+ ago I went back to the Readisorb, and my sleep started improving. For the last few nights I have slept through the night. Huzzah!

    Oh, and my RLS is greatly improved, and I very seldom suffer from the agitation/jump-out-of-my-skin feelings I had last summer.

    I've had many cases where adding something helped my symptoms for a while, but it always came back and got worse. I'm REALLY hoping the B12 was the key and it stays fixed this time.

    Does this sound familiar? Can anyone guess what's going on, and suggest any additional regimens that might help or additional sources of knowledgeable people? I've seen bunches of doctors and naturopaths over the last 20 years and none of them had a clue.

    Thanks for any help!!
    Gary
     
  2. Martial

    Martial Senior Member

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    sounds like some kind of methylation issues, I think it would be worth while to get a test done and see your snp mutations, 23andME would be the test to do it. You can then bring the raw results here and some people can read it for you, genetic genie, or mtfhr.net.

    I would also highly suggest checking out the work of Rich Vank and Fred from these forums, alongside the work of doctor Ben Lynch of MTHFR.NET.

    Also here is a more detailed breakdown into different sub types of hypo thyroidism, usually some are caused by chronic infections so it may be worth looking into that, some of your symptoms sound like they could be due to an infection of the CNS system. Or it could just be low b12 symptoms on its own, but worth looking into as well.

    http://chriskresser.com/5-thyroid-patterns-that-wont-show-up-on-standard-lab-tests
     
  3. Milford

    Milford

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    Do you know what your B12, Folate, Ferritin and MCV levels are ? Might be some clues there.
     
  4. garyfritz

    garyfritz Senior Member

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    Thanks, Martial and Milford! I've started digging into RichVank's protocols and started learning about methylation issues, but I wasn't sure if that applied here. I suspected I needed to get my SNPs tested -- I'll look into that.

    As for my T3/T4 levels, Ferritin, and possibly MCV, I have some past blood tests that show those but I'm out of town on a business trip this week. I'll look them up when I get back this weekend. Don't think I have any tests for B12 or Folate.
     
  5. caledonia

    caledonia

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    @garyfritz The test for B12 isn't really that useful. B12 can show normal or high when it's really low.

    There are two tests that might be helpful. The HDRI methylation panel shows what's going on with your methylation cycle and can confirm a partial methylation block.

    The Nutreval tests is several tests in one. Using Rich Vank's interpretation, you can determine if you have a partial methylation block, get an overview of the gut, amino acids, essential fatty acids, vitamins, minerals, toxins, glutathione, and the Kreb's cycle (for those of us with energy problems).

    I have links to those and many other methylation related things in my signature.

    As far as your experiment with switching to another brand of B12 and back again - all B12 supplements are not created equal. Absorption is a big problem. Bypassing the gut by taking it sublingually or by injection is necessary. Even then only certain brands are still effective.
     
  6. garyfritz

    garyfritz Senior Member

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    I remembered I have some blood test results on my laptop.

    MCV: 99 in 2012, mid-90's in mid-2013, 92 in Nov 2013, 94 in Feb.

    Ferritin: high 200's in 2013. My serum iron was running high so my naturopath told me to eat or take some calcium after eating high-iron sources. That was enough to pull it down into the good ranges again. Haven't tested ferritin since 2013 but in Feb my serum iron was 105.

    T3/T4: In Feb my T3 uptake was 33%, T4 was 8.3 ug/dL, TSH was 2.51 uIU/mL. In 2013 my T3 was 117, T4 was 8.0.
     
  7. garyfritz

    garyfritz Senior Member

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    Caledonia, all the B12's I tried were sublingual drops.

    Yikes, the Nutreval test is $800!! And the HDRI test is $325. With my deductible, all these would be totally out-of-pocket, so I think I'll wait on those unless/until it becomes clear I need them.
     
  8. whodathunkit

    whodathunkit Senior Member

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    @garyfritz: your story sounds similar to mine. I landed here after researching B12 for severe anemia. I just couldn't hang on to ferritin, even from an iron transfusion.

    I don't have ME/CFS, but I was pretty well "shot out", as a good friend is wont to say of things/people that are not working properly. I have a long history of really, really bad lifestyle habits (junk food, substance abuse, crazy hours/sleep patterns, etc.) that had left me in fairly poor health. I corrected some of it in the last few years with some detoxification regimens and addressing thyroid issues with iodine, but still was missing some pieces of the puzzle. I still tired easily, stamina was still poor, got brain fog a lot, and I was still hungry much of the time, frequently only an hour after eating a healthy meal, stuff like that.

    Then I started Freddd's methylation protocol at the end of last year, and boom! The hunger stopped almost immediately. That was the most profound and shocking thing for me...the galloping munchies and urge to overeat that I'd been battling for nearly my entire life were *gone*. I now look at food like a normal person does, instead of (for example) fighting the urge to take the whole plate of brownies for myself and eating them until I can't possibly stuff another crumb in. It truly is a miracle, as far as I'm concerned.

    Things have been getting better and better ever since.

    I suggest starting off by reading two of the sticky threads in the top of this forum: "B12: the hidden story" and "Active B12 protocol basics" for a primer. You'll have lots of questions but still is good for you to do some of the reading for yourself. The information hangs with you better if you can figure some of it out on your own.

    Also research posts by forum member "Freddd".

    To help you get started, the best brands for the foundational four supplements absolutely crucial to starting methylation are:

    methylcobalamin (aka meB12, methylB12, etc.): Enzymatic Therapy 1000mcg, Country Life methylcobalaminj 5000mcg (look for "Prod. No. 6304 on the back label")

    methylfolate (aka folate, active folate, mfolate, etc.): Solgar Folate (as metafolin)

    adenosylcobalamin (adB12): Anabol Naturals

    l-carnitine fumarate (LCF): Doctor's Best (look for "Sigma Tau" on the back label)

    There's usually a lot of confusion about what brands to get as some brands have changed over the years so the brand recommendations in older posts are not valid for some things. Those are the currently recommended brands. That will help you get started.

    Getting methylation going properly can be a real miracle. It was for me. Hope it can be for you, as well. :)
     
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  9. garyfritz

    garyfritz Senior Member

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    My 23andMe kit should be delivered this afternoon. I'll get that processed ASAP so I can see what I'm working with.

    Meanwhile it appears B12 wasn't the magic sleep elixir I thought. :( After getting those 3 nights of fabulous sleep, every night since that original post has been much less restful. I'm having a bit of edgy fingernails-on-chalkboard feelings, but not terrible. Not enough to keep me awake. I just don't seem to be able to fall asleep between about 1am and 5am. Still looking for the solution...

    whodathunkit, assuming I do end up starting the methylation protocol, is there one good place that carries all those supplements? Or do you just have to order them all separately?
     
  10. whodathunkit

    whodathunkit Senior Member

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    @garyfritz: Sorry if my post was misleading, like everything will be roses and moonbeams when starting methylation :p and it will be a straight upward trajectory from being sick to being well. Unfortunately, there is nothing quick and easy about getting methylation going and getting it stabilized (for those of us that are in bad shape, anyway). Although it can be a minor (or big) miracle over time. I've been up & down, wired & tired, awake & sleepy, etc. But the slope of the line of my improvement is steeply positive, even if my daily progress would be more of a scatter plot, with some points above and below the slope line. If that makes sense.

    Point being, a few really good days and then some not so good days is typical. Tension/anxiety/wired-out feeling is feeling is fairly typical, as well. It sounds like you need to add some supplements and maybe correct some existing deficiencies to even yourself out.

    You can get all the supplements online at iherb.com. I've never been in a brick&mortar store that carried all of them. The two I can find reliably at brick&mortar stores are the Country Life methylcobalamin and Solgar Folate. Whole Foods carries both, and so does one of my local natural food stores.

    I can't emphasize enough the importance of doing some back-reading on this forum. That will help you address your ups & downs with tweaking supplements and dosages, and also let you know that you're not necessarily experiencing some bad & weird reaction. There can be quite unpleasant reactions to starting methylation ("crashing" or getting really sick after 3 days or a week or two is very common, for example, it happened to me) but over time most of us come to know that we're not alone in that, and instead it's pretty typical.

    Plus, getting methylation straightened out is still no guarantee of feeling good all the time and sleeping good every night, etc. I sometimes have to remind myself when I feel "off" that even optimally healthy people still have days that aren't so great and that hormones will fluctuate no matter what (especially in middle age), and I will still get insomnia simply by making poor choices that cause me anxiety (like procrastination on something that needs to be done). Etc. Sometimes I wonder what part unrealistic expectations of the process/outcome of starting methylation plays when people don't have success with these supplements. Not that unrealistic expectations would be the whole story by any means, but they could play a part for some.
     
    Last edited: May 2, 2014
    sueami likes this.
  11. garyfritz

    garyfritz Senior Member

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    @whodathunkit, thanks for the pointers. I'll definitely do some reading.

    To be honest, hearing the horror stories of the "quite unpleasant (and possibly life-threatening) reactions," I wonder if I should mess with it. My issues are minor annoyances compared to what some of you folks were fighting. Makes me wonder if I should leave well enough alone.

    Though if the tension/wired feeling is a common symptom, then maybe I have a bigger problem under the surface than I realize...
     
  12. ahmo

    ahmo Senior Member

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  13. whodathunkit

    whodathunkit Senior Member

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    @garyfritz: actually, I think the opposite. I do not have ME/CFS, and while I was pretty well shot out (severe adrenal dysfunction, severe anemia, severe hypothyroid, debilitating monthly cycles, etc.), I don't think I was/am near as sick as (for example) ahmo or Freddd or some of the other people here. I could still go to work and function (although frequently, barely just).

    You do not mention being debilitated, either, so I'm going to assume that you're not, although your symptoms are definitely concerning. Absent an unknown/undiagnosed illness/syndrome, I suspect those of us who are not as sick as others on this forum may have an easier time of getting methylation going. It's like a road trip...if you're not as far away from home, and your car is not as severely in need of repairs, it's less difficult and takes less time to get back.

    I don't want to minimize anything, so I hope others will chime in if I'm wrong in stating this.

    But...from what I read, absent another unknown/undiagnosed illness, potassium deficiency is about the biggest (if not only) actually life threatening problem that could occur when trying a methylation regimen.

    The other symptoms generated when methylation starts and other reactions start taking place (including detox, bowel symptoms, and other vitamin deficiencies) may be hellishly hard to endure (to the point where it feels like one's life is threatened), especially if one is already at the ends of one's energy and ability to put up any more difficulty. That's entirely understandable.

    But the only symptom that's actually life-threatening can be potassium deficiency. And if you are prepared and proactive and know what to look for, that one can be handled fairly easily, before it gets severe enough to endanger life.

    Again, this is all assuming there's not another serious underlying, unknown condition. The likelihood of that being the case is small, but that caveat should be kept in mind.

    Freddd has also discussed people "uncovering" other conditions and syndromes after getting methylation problems out of the way. These problems eluded diagnosis for years because of all the overlying symptoms that were due to B12 and folate deficiency, etc. Once those deficiencies were corrected the other problems were able to be accurately diagnosed.

    However, it is entirely up to you whether you quit or proceed. Just throwing that out there as food for thought. Getting worse before you get better *can* be scary. I may have had an easier time dealing with methylation than others because I've been researching and dabbling in natural health and supplements for decades (all the while making gobsmackingly poor lifestyle choices due a hyper-addictive type personality, what a contradiction in terms) and so was prepared to get worse before I got better because I already knew that's frequently how healing goes.

    And I do hope someone else will chime in if my assertion that potassium deficiency is the most dangerous reaction that can happen from methylation is erroneous.

    P.S. That's a good video that ahmo posted.

    Also might consider getting the book "Could it be B12: An epidemic of misdiagnosis" http://www.amazon.com/Could-Be-B12-Epidemic-Misdiagnoses-ebook/dp/B005FQWOD0/ref=sr_1_1?s=books&ie=UTF8&qid=1399118647&sr=1-1&keywords=b-12 . It's very interesting and very scary as well. If you have a Kindle or a device with a Kindle app it's available instantly in ebook form.
     
    Last edited: May 3, 2014
    ahmo likes this.
  14. garyfritz

    garyfritz Senior Member

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    @whodathunkit, I agree with you. My symptoms are relatively minor. I'm definitely not debilitated. I'd just be a lot happier if I didn't have some of the symptoms. (Even at the worst last summer, I wasn't debilitated. Just very strung-out and sleep-deprived.) And who knows, I might find I've been running at sub-par so long that I don't know how healthy I *could* be!

    @ahmo, I started watching your video, and it got my attention at 1:20 when the doctor was talking about cerebral atrophy. 25 years ago I had a bout of really nasty headaches for about 6 months, and eventually I had an MRI. It showed my brain was severely atrophied, like a dried up walnut in its shell. Which was a bit of a shocker considering I've always been a very bright boy. (I have a very high IQ but I believe I never lived up to my potential because of my ADD tendencies.) If that was caused by B12 and the atrophy was that advanced 25 years ago, .... !!

    My naturopath tested me for pernicious anemia last summer, and it came back "negative Intrinsic Factor Abs." But maybe I've been running at a low-level B12 deficit without actual pernicious anemia. I don't think I've been tested for homocysteine but I might have to look into it.

    Thanks all!
     
  15. whodathunkit

    whodathunkit Senior Member

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    @garyfritz: advise to get the B12 book. It's an eye-opener. You definitely do not have to have pernicious anemia to be B12 deficient., and people can have deficiency symptoms even when B12 tests in the normal range. It talks about ADD and I believe it even talks about cerebral atrophy in the book. Also about what blood tests to get even when your serum B12 levels test well into the normal range, since serum levels don't say anything about whether or not the B12 in your body is actually getting into your cells.

    Personally, as long as I can get my hands on B12 I'll never be without it again. This whole experience has been an eye-opener for me. I'll cut back my dose of B12 when I cut back my dose of folate, but I'll never be without taking at least a few tabs of methylB12 per day, as well as some daily adenosylcobalamin.

    It also doesn't sound like potassium deficiency would be too much a problem for you if you decided to experiment with methylation. My own potassium deficiency symptoms were always fairly minor, even with the gargantuan doses of folate I take, and especially compared to what I read some people around here go through with potassium. Possibly the worse your health problems are, the worse your potassium deficiency symptoms could be.

    I also totally agree about forgetting/not knowing what healthy feels like. Looking back, due to probable chronic, low-level B12 deficiency my whole life, I don't know if I ever really have felt healthy. But better late than never! :D

    Good luck!
     
  16. ahmo

    ahmo Senior Member

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    @garyfritz In addition to Caledonia's linked vid "Methylation Made Easy" and doc "Roadblocks to Successfull Methylation", here's an excellent FAQ put together by phoenixrising member Eric/howirecovered. He's collated info from both Rich VanK and Freddd Protocols. http://howirecovered.com/active-b12-therapy-faq/

    I now see that my whole life has been undermined by underlying B12/folate. My genetic abnormalities contributed to the problems, as well as gluten, undertreated hypothyroid... I don't know how to actually prioritize the list of things that compromised my health, leading to a total collapse. But I do think B12/folate must be right there at the substrate/foundation level. Just as whodathinkit says in the final sentence, I now feel, in some ways better than I've ever felt in my life. Even though I have low exercise tolerance, no energy for being-in-the-world, my nervous system is calm, no more insomnia for first time in life. Best wishes, ahmo
     
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  17. garyfritz

    garyfritz Senior Member

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    FYI, the 23andMe results aren't back yet, but they should be here soon. Meanwhile I've ordered the B12 book and read through Eric's FAQ. Still need to read through the protocols, but I'll be leaning heavily on you folks to understand how I should implement them.

    Interesting observation last night: I've been taking sublingual B12 (mostly Readisorb liposomal) at bedtime for about 7 months, and it's helped my sleep dramatically. Last night I got together with some friends for a potluck dinner and a bunch of wine. Went to bed at about 11:30, and woke up at about 3am. No terrible muscular/nervous stuff, just a little bit wired, but couldn't get back to sleep. After about two hours I thought "Hey. I've read that alcohol destroys B vitamins. I wonder if it killed my B12 and that's why I can't sleep?" So I went and took another small shot of B12, and before too long I was asleep again. Still woke up groggy and woozy-ish, the way I tend to after a night like that, but at least I did manage to get to sleep.
     
  18. whodathunkit

    whodathunkit Senior Member

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    Wow, classic hangover pattern. I do not miss those days. :p How do you feel now?

    I've read accounts of "hangover cures" that look a lot like a mini (one-time only) methylation regimen. I wish I could recall where, but I can't.

    Also, interestingly, a member has posted here that during times when her methylation regimen was making her kind of wired out (that is, she was over-methylating), alcohol made her feel much better.

    Metabolizing alcohol uses up your available methyl groups, depending upon how much you drink. Helping your bod kick out more meythl groups is probably what makes you feel better.
     
  19. Tunguska

    Tunguska

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    This is what B12 does for me too. The first time I tried sublingual 5000mcg methylcobalamin middle of the day, it put me asleep. Have been using it before bed ever since (a few months now). It's much more reliable than valerian, skullcap and melatonin; all didn't work or caused problems but not B12.
     
  20. garyfritz

    garyfritz Senior Member

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    LOL!! I was unclear. I didn't drink enough to have a hangover. The wooziness is a frequent effect of the middle-of-the-night "wired" episodes. The interesting bit was that the alcohol might have CAUSED the episode by depleting my b12, and that taking b12 might have helped me get back to sleep.
     

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