B12 for probably non-ME/CFS symptoms

[ahmo]

@garyfritz It's possible that, indeed, the B12 worked for you, kick-started methylation for a period. But healing comes in phases, and it might be that you've moved into a new phase, so need to add new things. I can say from my experience that once I'd had a major detox, I became very aware of symptoms that hadn't showed before. It really is like peeling an onion. Not to be discouraged by that, but to persevere.

Fred didn't come to those high doses overnight. And he experimented with many doses before he settle on the ones he posted at the time I quoted. I still don't see any references to MFolate...are you taking some? good advice from @sueami here,

I see advice to kick up folate 200 mcg every 2-3 days and watch for symptoms. I'd do that, but I would be sure to kick up MB12 by 1,000 mcg for each step up in folate, to be sure you're absorbing enough of it to match folate.

I'm wondering about your other SNPS. I've just looked at Heartfixer re ACE: may be associated w/ > anxiety. Yasko suggests formulas to support adrenals, kidneys. I'm not suggesting these formulas, but pointing to the need for you to support adrenals, how you're v susceptible to stress.

But you have other precurosrs for anxiety. the CBS, as you're addressing w/ yucca. I was using yucca tincture to avoid the starch, but found the taste yucky. I now use a group of aminos. I'm unclear of the ways in which they each act. Spmetimes I self-test for all of them, but following detox, now often only one: ornithine, lysine, arginine, citrulline. Citrulline, arginine, ornithine have direct relationships to each other. You have not only the CBS++, but the DAO++ as well.

Also MAO++: likely histamine issues. Are you eating low-sulfur, low-histamine? For histamine I've found rutin and mangosteen excellent. Histamines can also cause irritability, anxiety, brain fog, etc. And increasing methylation can, initially, increase histamines.

The Many Faces of Histamine Intolerance http://healthypixels.com/?p=1044

http://thelowhistaminechef.com/wondering-why-you-react-to-everything-you-eat/
http://thelowhistaminechef.com/wondering-why-you-react-to-everything-you-eat/
Histamine food list http://forums.phoenixrising.me/index.php?attachments/allowed-restricted-foods-pdf.6408/
http://forums.phoenixrising.me/index.php?attachments/allowed-restricted-foods-pdf.6408/
http://livingnetwork.co.za/chelationnetwork/food/high-sulfur-sulphur-food-list/
http://www.mothering.com/community/t/1053485/sulfur-sensitivity
http://www.mothering.com/community/t/1053485/sulfur-sensitivity
http://forums.phoenixrising.me/index.php?attachments/allowed-restricted-foods-pdf.6408/

 

[garyfritz]

Sue, thanks for all the good info! You might not be the most experienced voice, but clearly you've figured this stuff out a whole lot better than I have so far.

Given your snps, I think there's a lot of benefit to you from exploring methylation deeply. The jitteriness without RLS sounds like neurotransmitter issues that could be addressed with the right protocol for your snps.
There's probably a million things that have insomnia as a symptom, but Lynch has it high on his list for a1298c:

It's hard to describe some of these sensations. I wouldn't really call my symptoms "jitters without RLS." It's almost more like "almost-but-not-quite RLS." It's the crazy-making sensation associated with RLS, but not severe enough to trigger the "I have to move/kick/jerk or I will go insane" feelings. I often have a low-grade version of that during the day, but the other night I had it at night & couldn't sleep. I suppose that counts as insomnia but I'm sure there are a hundred different types of insomnia.

You do have COMT and MAO A involvement, so treatment might be trickier. You have enough homozygous snps of significance, that I would consider pursuing treatment with someone very familiar with methylation issues.

I'm going to give my MD a shot when she gets back. I want to have her address the H. Pylori stuff anyway. I'll be fairly surprised if she's as expert at the methylation issues as some of the people here, but it's worth a try.

And honestly, I saw nothing but negative impacts from the first two months of my methylation protocol work. That could have been detox/symptom return and part of a healing phase, or it could have been me being way out of whack with folate vs. mb12.

That's part of my frustration. I don't really see ANY effects of my experimentation, positive or negative. B12 had stopped working quite so well, but even after that a B12 "booster" usually got me through sleep or RLS issues. That's pretty much where I still am. The methyl folate, adB12, etc haven't made any noticeable difference. I'll add in the LCF soon.

It's possible you need to get to a threshold with folate before something kicks into gear for you. I see advice to kick up folate 200 mcg every 2-3 days and watch for symptoms. I'd do that, but I would be sure to kick up MB12 by 1,000 mcg for each step up in folate, to be sure you're absorbing enough of it to match folate.

Yes, I think I need to improve my dosages AND my timing. I've been taking too much of this stuff in the evening, right before bed. That seemed appropriate, since evening/night was when I had nearly all my symptoms, so that's when I hit it with the B12. But I need to spread my methyl folate across the daytime hours. I wonder if I should spread my B12 across the day too. B12 is supposed to have a longer half-life.

 

[garyfritz]

@garyfritz It's possible that, indeed, the B12 worked for you, kick-started methylation for a period. But healing comes in phases, and it might be that you've moved into a new phase, so need to add new things.

Could be. I'm stumbling in the dark here so I appreciate any light you can shed on the subject!

But you have other precurosrs for anxiety. the CBS, as you're addressing w/ yucca.

Not yet. I'm ramping up the mB12/adB12/methylfolate/LCF right now and I wanted to do one thing at a time.

Also MAO++: likely histamine issues. Are you eating low-sulfur, low-histamine?

Not so far. I've looked at the food lists and it basically looked like "Don't eat anything you like."

 

[sueami]

"It's almost more like "almost-but-not-quite RLS." It's the crazy-making sensation associated with RLS, but not severe enough to trigger the "I have to move/kick/jerk or I will go insane" feelings. I often have a low-grade version of that during the day, but the other night I had it at night & couldn't sleep."

I might entertain the possibility that this was progress. That you were experiencing a diminished version of your symptoms. I am not sure of the mechanism behind restless leg syndrome, but if it is neurological in origin, then this could be some neurological healing going on.



I would dose out the mfolate and b12 throughout the day, because you are using it for a different purpose now. When you were taking just b12, you were taking it for symptom control and taking it at night worked and made sense.

Now you are adding in other ingredients and you are attempting to restart methylation, a different process. Most people prefer not to have methylation supps running full blast at night, as it affects their sleep, so shifting the timing of your supplementation seems quite reasonable.




And I hate to say it, but CBS is supposed to be addressed first b/c starting up methylation when you are upregulated on CBS will create more ammonia/sulfur detox problems.

This is a thread from another forum that Rich VanK answers on. There's some interesting stuff there:

http://forums.prohealth.com/forums/...bs-upregulation-methylation-treatment.177489/

According to this thread, at some point, Rich decided that if metabolite testing was too expensive, it would be best for people to start methylation and see if they notice negative impacts that would indicate a CBS upregulation, then adjust their diet and supps to fix that.

Did the urine test strips indicate high sulfates?

Fwiw,
Sue

 

[garyfritz]

I might entertain the possibility that this was progress. That you were experiencing a diminished version of your symptoms. I am not sure of the mechanism behind restless leg syndrome, but if it is neurological in origin, then this could be some neurological healing going on.

Hm, could be. The "crazy-but-not-quite-RLS" is nothing new. I've endured that for years, especially last summer. In fact I have a low level of it going on right now. It's so near-constant I don't really notice it unless it gets bad. I suspect it's related to the "crawl out of my skin" feelings I get sometimes. I also occasionally get something I've seen described elsewhere, a feeling like my nerves/muscles are almost vibrating. Much less since starting B12.

Now you are adding in other ingredients and you are attempting to restart methylation, a different process. Most people prefer not to have methylation supps running full blast at night, as it affects their sleep, so shifting the timing of your supplementation seems quite reasonable.

Hm. The skin-crawling and RLS usually happens in the evening, and the sleep problems typically happen about 2-3am. That was why I took the B12/etc in the evening. But maybe you're right. Maybe I'm doing something else now and need to start hitting the supps earlier in the day.

And I hate to say it, but CBS is supposed to be addressed first b/c starting up methylation when you are upregulated on CBS will create more ammonia/sulfur detox problems.

I know, I know...

Did the urine test strips indicate high sulfates?

I found them almost impossible to read. I *think* they indicated something over 1200 but I'm not sure. The colors/etc didn't really seem to match the illustrations on the package.

 

[ahmo]

@garyfritz ...Back to food. Are you gluten-free? When I stopped gluten my jumping-out-of-my-skin sensation stopped. It was only from then on that I progressed in other aspects of anxiety, over-active nervous system.

 

[garyfritz]

Not GF, no. But in late 2012 I tried going 100% grain-free for 2 months. The only difference I noticed was that I really missed good bread, and I was hungry a lot without that backbone to my diet. After 2 months I figured if there was no benefit, there was no reason for me to deprive myself of a food I really enjoyed. I still eat a LOT less bread/grains than I used to, but not GF.

 

[ahmo]

You might try it again, even 3-5 days, see if it makes a difference. May of us have what's known as 'symptomless' celiac. Unfortunately it includes more than just wheat gluten. There are also a group of foods that are gluten cross-reactive and the immune system recognizes them as gluten, so attacks.

I know eliminating foods is a dreadful prospect, especially when everything is so hard already. Since I've found the cross-reactive list a few weeks ago, and its implications, I've had to pare down yet again. But my signs of stressed adrenals have lifted. Hope your RLS passes soon.

 

[garyfritz]

@ahmo, so what are you suggesting I eliminate? In 2012 I totally eliminated ***ALL*** grains -- wheat, rice, corn, spelt, millet, EVERY grain -- for two months. What would you do differently?

Happily my RLS isn't too bad these days. I've had very few bad days since I started B12 last year. But RLS is a symptom more than a core problem. RLS (and the lower-level almost-RLS that I have MUCH more often) drives me a bit bonkers, but the sleep issues cause sleep deprivation and that's a much bigger problem. It was SUCH a blessing to get 7-8 hours of uninterrupted sleep every night for 6 months!!! I honestly looked forward to going to bed every night, knowing I was going to get a full and restful night's sleep. And it still happens occasionally. Last night was 7.5 hours of solid sleep. Bliss!

 

[ahmo]

Well, it's what I have done differently. About 2 years ago I was forced to eliminate histamines and sulfur foods because my symptoms were so clearly linked to them. I'll probably never be able to resume histamine foods, but I'm also needing less supps to deal w/ the histamines produced by my body. I tried adding in beans a few months ago, reduced it to 1 Tb every other day, hoping it would be my resistant starch for feeding the probiotics. But symptoms developed, and then I discovered it's on a list of auto-immune stimulating foods.

So my gut has improved enough to add a bit of starch, but the beans, and the 'non-starch' buckwheat are affecting me negatively. Buckwheat's gluten cross-reactive, and beans auto-immune provoking, 2 categories I didn't know about until 2 weeks ago. I've had to accept that this is my reality for the time being. I'm about to start low dose naltrexone, which will hopefully dampen the auto-immune response and let me add some things back. Believe me, I've spent many hours feeling . In return, my nervous system and mental health have never been better, my physical stamina is slowly returning.

 

[sueami]

Hey @ahmo, I'm trying to figure out where I need to go next (after our travels) diet-wise, and I was intrigued by your comment about auto-immune provoking foods. I am waiting on test results after a new primary care physician actually took interest in my mention of fatigue and wanted me tested for ANA, because he suspects Lupus.

How does this site and its protocol look to you?

http://aiplifestyle.com/what-is-autoimmune-protocol-diet/

(I don't mean to hijack your thread, Gary, but it didn't seem a big enough question to start a new thread on. I hope you don't mind.)

 

[ahmo]

@sueami Hey Sue, that's exactly the site that caused me much gnashing of teeth, wailing when I was referred to it a week or 2 ago.

After 2.5 years on GAPS w/o histamines and sulfur, 1 year on Freddd's Protocol, uncovering Mast Cell issues, and a major detox effort and elimination....then I need to say, Well then, what are these symptoms?? After a decade of tinnitus so horrific that I wanted to push some sharp object into my ears, I learnednot so long ago that this was an adrenal symptom. It began reducing after eliminating gluten, dairy. And after my big detox elimination there was SILENCE!!

Now it comes and goes, just a hiss, but with varying volume, and I read it as sympotomatic of adrenal stress. First I heard about gluten cross-reactive foods during the recent Thyroid Summit talks, and eliminated those.Although I now need to ditch my T3 rx and go to compounded T3 w/o cornstarch

That shifted the strong signs of adrenal stress on my face (dark red/blk circles under my eyes), but hiss remained. so I eliminated the seeds, nuts, my only pleasure. And the hiss stopped. After a few days I tried sunflower seeds again, a tiny amount: hiss resumed. I absolutely understand gary's reluctance to eliminate things. But I'm determined to continue this path of healing, and I need to do everything I can to de-stress my adrenals.

My next hope is low dose Naltrexone (LDN). It was just a name to me until I listened to a preso about it on the Thyroid
Summit. It's been amazingly effective in reversing (?) auto-immune disorders. There's a very long thread on pr. If I can stop the auto-immune response at it's core, then maybe I'll be able to eat some of those foods again. Tho I'm pretty sure none of the gluten cross-reactive, like buckwheat, will be possible. Maybe beans tho....

 

[garyfritz]

Very interesting, ahmo! I never would have thought to consider tinnitus as a symptom of something like that. I've always assumed my tinnitus was the after-effect of many hours on loud tractors in my teens, and too many too-loud rock concerts after that......

 

[ahmo]

That may also be true, gary. Since I learned about the adrenal connection I've never gone searching for other causes. It was years before I even attached the label tinnitus to this sound in my ears that began when I collapsed w/ ME/CFS. I asked each of my early doctors about this sound, "Like what flouro tubes sound like, buzzing" in my ears. No answers. I eventually got my hearing tested. It was OK, but at that time the distraction of the screeches was so bad that at times I couldn't distinguish the sound coming through my earphones from those inside my head. Oh the blessed silence

 

[garyfritz]

Hm, if your tinnitus started when you had a ME/CFS crisis, it does make sense that it would be connected. I don't remember when mine started -- childhood, maybe?

The explanation I've always heard for tinnitus was that it was caused by loud noises -- loud enough to destroy some of the cilia in your ear. With those hearing organs gone, your brain "fills in" with the sounds of tinnitus, something like a phantom-limb effect. Now that I think of it, though, I think I remember hearing of cases that were caused by certain medications &etc -- and, apparently in your case, certain foods.

Different people can hear different sounds from tinnitus. Mine is a high-pitched sound, like a pure note at very high frequency. Can you hear a high-pitched sound from old-style CRT TV's? That's similar to what I hear. It's never debilitating but it can definitely interfere with a hearing test. It comes and goes in level of severity. I never thought to pay attention to what (diet, etc) might be causing it to increase and decrease. I'll have to keep an eye on that...

Congrats on curing yours! And if the tinnitus was a symptom, I'm sure resolving it helped other areas of your health, too.

 

[sueami]

I have tinnitus too, of the high-pitched variety. I notice it intensify sometimes, I think I ignore it most of the time, not sure if it's ever gone. I'm very intrigued to hear that it's connected to adrenals with you, Ahmo. Those have definitely been varying degrees of stressed for me.

That's great info, @ahmo, thank you. I'm going to try this diet when I return and give it a month or so to see what gets better. If my test results point towards auto-immune/Lupus I will see if my PCP will go the LDN route.

And I get the resistance to dropping all the foods and drink that make life fun too. Maybe it's the anxiety talking in me, but as I have gotten worse/not gotten better the last six months, I'm scared I'll continue to decline and I"m at a point where I"m willing to try drastic things to get better. If you're not feeling that badly, Gary, then of course you wouldn't feel as urgent about drastic changes.

I tell myself that I live in Colorado, where pot is legal now, so there's always that fallback if I get totally desperate to indulge in something. Though I suspect the current crop would knock me senseless -- been decades since I last tried any.

Sue

 

[ahmo]

Happy Travels Sue.

 

[garyfritz]

Update: I'm now taking 20mg CL mB12, 4mg adB12, 1000mcg methylfolate, all spread through the day. Ramped up to 855mg LCF this weekend. Haven't noticed any wired/jittery feeling from the LCF.

Sleep is so-so. Some nights good, some less so, but never as bad as the worst jittery/nightmarish times. More just on-edge, just enough to keep me awake. A hit of B12 in the night usually helps me back to sleep, but not always.

I see my MD on Weds to have her go over my SNPS &etc. We'll see how well she understands this stuff. Because yaknow I'm an expert now.

 

[ahmo]

@garyfritz

 

[garyfritz]

I suppose I should be happy, but I'm a little disappointed. I'm doing much MUCH better than last summer, but I felt & slept better than this for the 6 months after I started B12. I hoped kickstarting my methylation would make a dramatic (or at least noticeable) difference. But I've got the full Deadlock Quartet going now and I can't tell that anything's changed. I expected... well... SOMEthing...??