B12 for probably non-ME/CFS symptoms

garyfritz · Jun 20, 2014

Thanks Sue! I PM'd you.

Ah. I assumed you would use a consistent dose/etc, so it wouldn't make any sense to chart it. I guess if you're experimenting with dosages, administration time, etc, it would be useful to record that.

LOL!! Between you and Sue, you're going to convince me to do the injections!!

Do you have to get a script for that from an MD, or...?

Yeah, there are definitely differences. I experimented a bit with the WF drops and they worked, but they didn't seem to work as well as Readisorb. But that was when the B12 in general was losing effectiveness, so I'm not sure about cause/effect. But I can't get any Readisorb for a week or more, so hopefully something's better than nothing.

I don't think Readisorb is a physician-level supplement -- you can order it on Amazon. (Hm. I guess you can order it on Amazon if you're in the UK. But it is available online from other US vendors.) It just seems to be very effective for me. As I said, when I've got symptoms driving me bonkers, I can feel the effects within minutes. I'm not sure how it compares in effectiveness to Jarrow 5mg, which is what I've been using lately. If Jarrow hasn't been fixed since it "went bad," Readisorb might be a lot more effective. I should get some of the recommended Enzymatic Therapies 1mg and/or Country Life 5mg. Or join the rest of you addicts and start shootin' up. LOL

garyfritz · Jun 20, 2014

ahmo said:

@[USER=5434]ahmo, that one uses Quatrefolic® [6S]-5-Methyltetrahydrofolic acid instead of Metafolin. I have avoided B-complexes with that because "folic acid is bad." Is [6S]-5-Methyltetrahydrofolic acid OK?[/user]

caledonia · Jun 20, 2014

garyfritz said:

No

literally micrograms. I'm going extremely low and slow due to metal detox. Amazingly, I'm still getting some nice results though, such as I've been able to stop my thyroid med.

My doc had me increase magnesium and potassium one at a time until either I hit diarrhea or the symptoms resolved. That didn't exactly work for me - I reached a point where neither of those occurred, but I started feeling worse, so I figured I was past the "sweet spot", I went back to the last point where I felt better. Now that I've been on them for a few more weeks, the heart palps and leg twitches are starting to improve the last 10-20%.

caledonia · Jun 20, 2014

garyfritz said:

Even if you have bad CBS genes, it still may not be expressed.

After 8 years, I would probably want to retest to confirm. But I wouldn't be surprised if the same trends continued, unless you've done a lot of work on the gut, methylation, and supplementing with minerals.

garyfritz · Jun 20, 2014

OK. I'm still a little unclear on the whole expressed-genes idea. I guess if you have the mutation your chances of (whatever) are increased, but not certain. That's good, because I have half a dozen genes that predispose me to prostrate cancer. And my dad had it.

Interesting that you're doing well on 1000x less mb12/adenob12 than many of the rest of us!

I stopped in at Whole Foods to pick up a few things. Discovered the B12 drops I was going to use have folic acid in them. I wonder if that's why they were less effective than the Readisorb?

WF didn't have potassium gluconate powder so I stopped at the store and got some Morton salt substitute. I've been taking slow-release potassium chloride, but if I wake up with cramps I don't want to hassle with crushing tablets. This way I can take 1/8 - 1/4 tsp and get a 300-600 mg hit of potassium.

garyfritz · Jun 26, 2014

Update: I'm moving slowly to change things, waiting a few days between each change.
* I got some Niacin and Potassium on hand.
* I switched to the Douglas Labs B-complex, which results in my methylfolate bumping up to 800 mcg/day.
* I got some of the Country Life 5mg B12. It dissolves a LOT faster than the Jarrow. I've been using it about 5-6 nights now. The first 2 nights I used it, I slept like a baby. Seemed like 10mg of Country Life was much more effective than 20mg of Jarrow. But then each night my night-time torments got worse. Tonight I've taken 15mg of the Country Life and it hasn't even touched the RLS that's driving me crazy. I'm not looking forward to the night. I have a bit of Readisorb with me, which does still seem to work, so hopefully that will get me through the night. (I would sure like to understand why something helps for a while, but then it always quits working!!!)
* This weekend I'll start adding 1mg of adenosylB12 per day. (1/8 of a Source Naturals dibencozide lozenge) Is 1mg usually enough or should I plan to step it up after a while?
* A few days after that I'll add some Doctor's Best LCF, 855mg/day.

I sure hope the adenosylB12 & LCF kick things off to keep the heebie-jeebies under control...

ahmo · Jun 26, 2014

Hi gary. Sounds like you're on track. I've just finished, for the moment, my compilation of Freddd lore into a Guide. there are a few pages on anxiety. You might be able to find something useful. It's not as elegant and easy-to-use as I'd have liked, but it's a testament to how much I've improved on the Protocol. pdf is now in my signature line. cheers.

garyfritz · Jun 27, 2014

Thanks ahmo! I will check it out. At first glance it looks **FABULOUS**. Thanks for your great work!!

I might be splitting hairs, but I don't think I'd call what I get "anxiety." That sounds like emotional distress. While I do get emotionally distressed during these sessions, it's a *result* of the night torments, not a cause. (You'd probably get emotionally distressed if somebody poked you with a cattle prod every few seconds from 2am to 5am.

) My discomfort is mostly physical, not mental or emotional. It's sort of like a whole-body variant of RLS. But it's not entirely physical either. It *does* definitely drive me bonkers, and it can be literally nightmarish.

ahmo · Jun 27, 2014

I never used the word anxiety for my experience until the past couple years. It's clearly been about my physiology, not my emotions. Of course, as you say, it then has it's own emotional component. but I'm talikng about edgy, irritable , agitated, over-reactive. Thankfully I don't live in that space any more. And the references I've included in this doc have to do w/ effects of the components we're adding to heal ourselves.

garyfritz · Jun 27, 2014

OK, then I think we're talking about the same thing, or at least pretty similar. I can certainly get irritable and agitated when I'm in the crawl-out-of-my-skin mode. And "agitation" is the word I've used to describe my middle-of-the-night problems, when I'm in a half-awake nightmare, thrashing and twitching, unable to lie still.

Last night was much better than I expected. Woke up at 2am edgy and twitchy, took one 5mg Country Life B12, and I don't even remember finishing it. Slept soundly until 6am. Yay!

So is it common/typical to find something that works, only to have it fade away after a few days/weeks/months? Does that indicate anything significant? I've gone through that with calcium/magnesium, L-glutamate, and Readisorb B12. I'm hoping adding other components to the B12, with insights into my genetic issues, will enable me to find a solution that works and KEEPS working.

So far though, I'm not learning that much from my genetics. I know I've got MTHFR issues, but you could probably guess that from my response to B12. I've also got CBS, MAO, COMT, and others. Should I be doing anything specifically targeted at those?

BTW am I the only one who subconsiously adds extra letters to M*TH**F****R ???

ahmo · Jun 27, 2014

Fantastic!

I Don't know. Possibly as things shift, some new deficit shows up...so once you've got the Ca/Mg corrected, it becomes obvious that there's something else needed. For me this has taken the form of finding things that are irritating my system. Once I deal with one thing, another is revealed. (currently gluten cross-reactivity, and auto-immune irritants

)

Re your other SNPs, both the MAO and CBS ++ can be contributing to irritability. MAO suggests high histamines, CBS high levels of ammonia due to poor metabolism of sulfur. Getting on top of CBS issues is generally recommended before increasing B12/folate, so as to not further back up the system. See the links in caledonia's signature, especially the first 3 about how to start methylation protocol, and heartfixer for summarized versions of Yasko's protocol, listed by each defect.

MAO means high possibility of histamine issues. COMT I have limited understanding of. Known as Warrior/Worrier gene. I functioned on warrior side most of my life, became worrier at the height of my inflamed nervous system. Happily after 2.5 years healing I've found some

http://livingnetwork.co.za/chelationnetwork/food/high-sulfur-sulphur-food-list/

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

http://peelingbacktheonionlayers.com/could-histamine-be-sabotaging-your-digestive-health/

Histamine food list http://forums.phoenixrising.me/index.php?attachments/allowed-restricted-foods-pdf.6408/

http://thelowhistaminechef.com/these-probiotic-strains-lower-histamine-rather-than-raising-it/

garyfritz · Jun 28, 2014

ahmo said:

Yes, IF it keeps working. Last night I woke at 2:30, took a 5mg, slept for less than an hour. Couldn't go back to sleep, took another 5mg, and half-slept until 7. But at least I wasn't thrashing and twitching the whole time.

The Country Life worked great for 2 days, then seemed to lose effectiveness. But at least it did work for a few days. I've been using the Readisorb when I woke with the twitches. A 5mg lozenge is easier (especially when traveling) than carrying a spray. I'm not sure if the 5mg is overdoing it, or if my body just needs a ton of it, or what.

And I've mentioned I've long suspected a histamine issue, due to my various itches. (Very sensitive to mosquito bites, greatly helped by benadryl cream; apparent bee-sting allergy (got stung on the forehead when I was a child, and my face swelled up so much I couldn't see for 3 days); "cold urticaria," hives triggered by getting chilled; itchy skin triggered by dry air; etc)

I'm not sure what to do about it, though. Dr. Roberts at heartfixer isn't sure what to do about MAO A either. Still researching.

Ya, I saw that on heartfixer last week. I'm +/+ CBS *and* +/- BHMT, so I'm definitely at risk. (But my +/+ is CBS A13637G, which does not get mentioned much, so maybe it's a lower-concern allele? My A360A and C699T are -/-.) But since I've already been taking B12 for almost a year, I figured I might as well continue on the B12/folate path. I'll look at the sulfur-foods issue. I may be somewhat sensitive to eggs -- still not sure -- so that would fit.

I am *SO* not a Warrior.

My mother is a Worrier. I used to be, but I think it was learned behavior vs. genetic tendency. I taught myself new behavior decades ago.

Gary

ahmo · Jun 28, 2014

Rutin, mangosteen, quercetin all excellent as anti-histamines. Quercetin is higher sulfure, tho, I think.

sueami · Jun 28, 2014

Gary, I'm reading through Hip's huge thread on anxiety and ammonia and it's filled with references of people improving their sleep by reducing ammonia levels, through yucca supplements in the evening. That might be a quick experiment to try. Someone mentioned Nature's Way Yucca and King Sooper's may even have it.

(@ahmo, thank you for the reply on my other thread. I"m working my way through your histamine links now and trying to figure out a relatively low-risk protocol I could implement before and during vacation.)

Just a thought,
Sue

p.s. Gary and I were shocked to discover the other day that we live two blocks apart. How incredibly bizarre and coincidental is that??

ahmo · Jun 28, 2014

p.s. Gary and I were shocked to discover the other day that we live two blocks apart. How incredibly bizarre and coincidental is that??

garyfritz · Jun 29, 2014

Thanks for the pointer, Sue! Not sure KS carries the yucca, but Wallyworld does. I'll pick some up and give that a try.

Probably not right away, though. I've got too many other things in the pipeline already.

Just started taking adenosylB12 2 days ago (1mg adenosyl, 1/8 of dibencozide lozenge). No noticeable changes so far. In another day or so I'll add in the LCF.

Should I stay at 1mg adenosyl, or boost it a bit? Freddd's protocol seems to call for only 500mcg ! But on p. 4 of ahmo's EXCELLENT guide, Freddd says he's currently experimenting with:

90-120 mg Country Life B12 (!! I'm taking 10-15)
10-20 mg Enzymatic Therapy B12 (not currently taking)
10-20 mg (1-2 capsules?) Anabol Naturals Debencoplex with ~ 8-16 mg adenosyl (I'm currently taking 1mg)
8-12 mg Metafolin (I'm currently taking 800 mcg)
2 capsules Dr's Best LCF (I'm about to start 1 capsule)
800 mg SAM-e (not currently taking)

So he's taking massively larger doses than I am of a lot of stuff. I think his issues are much more severe than mine, so I'm not quite sure how to implement that for myself. P. 5 of ahmo's guide says "if startup does not occur by the time one gets to 1000 mcg combined absorbed cobalamins, titrate LCF." I'm taking 10-15 mg methylB12 and currently 1mg adenosyl, so I would assume I'm absorbing well over 1000 mcg? But p. 5 also says to titrate methylB12 and adenoB12 "until it makes no difference."

So far the only "difference" I'm seeing is from the methylB12 -- helping my sleep, RLS, and crawl-out-of-skin sensations. I haven't been real consistent in my dosages, moving from Jarrow to Country Life, experimenting with 10-15 mg, sometimes taking one in the night, etc. I'm wondering if I should boost the CL B12 & adenosyl "until it makes no difference," maybe 20-30mg or more CL and 5-10mg adenosyl. But I'll wait until I get the LCF started up.

Too many variables.......

sueami · Jun 29, 2014

Tell me about it. I've spent chunks of the last two days trying to fit my ridiculously numerous supplements into pill boxes of various sizes (with labels of course, so I know what is what) so I don't have an entire suitcase of just pill bottles for this upcoming trip. I feel like such a hypochondriac when I see it all laid out like that!

If you are not feeling fatigue or neurological symptoms, you may not notice a big effect from the ADB12, I might guess.

What I understand is that ADB12 differs from MB12 both because it enters the mitochondria and it can cross the blood brain barrier. If you don't need it, you won't notice effects from it, so I'd keep titrating up to at least 5,000mcg just to be certain you don't have a higher threshold you need to cross. (I'm kind of picking that number up off the top of my head, but it would roughly correspond to 1,000 mcg absorbed).

I really noticed LCF and still have troubles with it depending on the time of day I take it. I've moved to mid-afternoon between meals because it made me very racy/jittery first thing in the morning. I have powder in capsules so I haven't been titrating it well, and that could be my problem.

But from what I've read LCF can be challenging for a lot of people. Again, you're not experiencing nearly the symptoms many others are, so may not notice anything. But I think giving your body a week or so to store and use ADB12 before trying the next thing is helpful.

I've been so slow to recognize when a supp or food is giving me trouble because of the lag time in absorption and the many different things I'm taking. I see now why the advice to go slow is so valuable. (not that I've done a good job of heeding it, mind you.)

I am actually going to try yucca asap, as last night we had steak for dinner and I woke up in the wee hours of the am with weird, pounding heart feeling/anxiety, and I think it was an ammonia event. I was kind of chuffed to have identified what might have been going on. (Maybe you can't be kind of chuffed, maybe you can only be dead chuffed. I'm probably mangling that Angloism.)

garyfritz · Jun 29, 2014

sueami said:

Fortunately my symptoms are mild. I have neuro symptoms (the sleep issues / night-time torments, RLS, sometimes agitation / crawl-out-of-my-skin feelings). I don't feel like I'm a powerhouse of energy, but I'm not suffering from extreme fatigue. I spent over 2 hours doing yardwork this morning, working up a good sweat, with no problems. Except I've felt lazy all afternoon. (But the beer may have contributed to that.

)

OK. That makes intuitive sense to me -- doesn't seem right to do 10-20x as much methylB12 as adB12. And it sounds like Freddd is boosting his levels a lot. I'll start titrating up on that. Is 20% absorption typical?

Hm, OK, I'll keep that in mind. Racy/jittery is similar to what I'm trying to get AWAY from.

garyfritz · Jul 1, 2014

Ugh. I think B12 is losing its effectiveness for me.

* I started B12 last summer. For 6 months it only took 1-2 shots of Readisorb (500-1000 mcg) to get 7-8 hours of blissful uninterrupted sleep.
* In March I started not sleeping as well, but still much better than last summer.
* 2 months ago I discovered this site, and since then I've been experimenting with raising my dosages, adding adB12, etc, and soon I will add LCF.
* I really have not seen **ANY** effects from the changes. No signs of methylation start or other noticeable differences.
* I'm sleeping less well. Last night I woke at 3am and additional B12 (Readisorb AND a CountryLife lozenge) seemed to have no effect. I wasn't in the jittery/thrashing phase, but I was on-edge and agitated. Didn't get much sleep after that.

So: B12 resolved my symptoms BY ITSELF for 6 months. Surely I couldn't have kickstarted methylation with just 500-1000 mcg of methylB12? Why did the benefits go away? What do I do??

sueami · Jul 1, 2014

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:

http://mthfr.net/mthfr-a1298c-mutation-some-information-on-a1298c-mthfr-mutations/2011/11/30/

Heartfixer says this about the mutation:

MTHFR A1298C: 5,10-MethyleneTetraHydroFolate Reductase (Þ BH4)

The MTHFR C677T defect effects the “forward reaction”, the conversion of THF in to 5-methyl folate. MTHFR A1298C has no adverse affect on 5-methyl folate production, but it does compromise the “backward” reaction, whereby 5-methyl folate is converted back in to THF, in the process generating one molecule of BH4.

Individuals with abnormalities in CBS and BHMT will be low in BH4, as it is being used up detoxifying ammonia that these defects have generated, so their combination with MTHFR A1298C leads to a BH4 deficiency double whammy.

DHPR is the enzyme that regenerates BH4 from BH2. It is poisoned by mercury, lead, and especially aluminum. These toxins are wide spread in our environment, and individuals with Methyl Cycle abnormalities have particular trouble dealing with them.

The result is a progressive drain on BH4, a progressive impairment in neurotransmitter production, and conversion of arginine not in to nitric oxide but instead in to free radicals such as superoxide and peroxynitrite.

We treat MTHFR A1298C with 5-methyl folate supplementation (aiming to push the reaction backwards) and, after your other Methyl Cycle challenges have been addressed, with nutritional doses of BH4.

Metal detoxification will help here and with every other biochemical function in your body, and will be part of your overall program. We will also endeavor to decrease your need for BH4. If you are COMT (-/-), we can provide nutritional support to help maintain dopamine levels, such that you will need to use less BH4 to generate more. If you are MAO A (-/-), we can do the same thing with serotonin precursors such as high tryptophan foodstuffs.

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. It's a quality of life issue at the very least, and depending on your coronary health markers, possibly a longevity issue.

I guess it doesn't surprise me that b12 alone wouldn't provide a long-term fix. It's one element of a super complicated system and you have a fairly complicated set of mutations to that system. You clearly need more mb12 and more folate based on MTR and 1298, MAO A may be creating histamine issues, those four MTHFRs could be quite significant, though I don't know.

I am quite resistant to the idea of metals/mercury detoxxing (so much controversy surrounding the need for it and the physical demands/expense of amalgam removal), but that comes up with a1298 on both Lynch and Heartfixer, so it might be worth pursuing at soem point.

If it were me (and I guess it is me, but I'm showing some decent improvements right now, so I'm willing to give the Deadlock quartet protocol more time) I would consider a trip or a phone consult, if he'll do it, with James Roberts, or another really well-versed practitioner. Life is short, particularly for those of us on the back nine and it's not worth pinching our pennies while our body struggles and perhaps declines.

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.

Then I started taking the mb12 shots and suddenly all my major symptoms are improving, oh, maybe 30-35 percent right now (with some down days sprinkled through the last two weeks). One of the things I've found with this symptom improvement is I'm able to notice when other factors might be affecting my wellbeing -- in particular I feel like I'm beginning to be able to tease out some diet-related effects that were lost in the brain fog and overall noise of the complex disregulation.

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.

I of course, defer to more experienced voices here, but that's my 2 cents worth.

sue

B12 for probably non-ME/CFS symptoms

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