B12 for probably non-ME/CFS symptoms

[garyfritz]

Adding the adB12 & methyl folate back in did definitely seem to help. I slept better and even had some cramping in my calves when I got up the first morning!

On the 3rd night I woke up with symptoms, minor but enough to keep me awake. I took some CL mB12 to get back to sleep, but couldn't sleep much past 5am. Hopefully that won't be a regular occurrence. The shots are a hassle so I'd hope they would *replace* the CL and let me sleep through the night without additional sublingual B12.

I also stopped taking 5HTP about a month ago, wondering if the B12 alone would be enough to let me sleep well. The 5HTP never addressed my B12 symptoms, but it just made it easier to sleep through the night and go back to sleep if I woke up. Gonna start the 5HTP again tonight.

BTW @Freddd, do you take the methyl folate sublingually, or can I just swallow those?

 

[Freddd]

Adding the adB12 & methyl folate back in did definitely seem to help. I slept better and even had some cramping in my calves when I got up the first morning!

On the 3rd night I woke up with symptoms, minor but enough to keep me awake. I took some CL mB12 to get back to sleep, but couldn't sleep much past 5am. Hopefully that won't be a regular occurrence. The shots are a hassle so I'd hope they would *replace* the CL and let me sleep through the night without additional sublingual B12.

I also stopped taking 5HTP about a month ago, wondering if the B12 alone would be enough to let me sleep well. The 5HTP never addressed my B12 symptoms, but it just made it easier to sleep through the night and go back to sleep if I woke up. Gonna start the 5HTP again tonight.

BTW @Freddd, do you take the methyl folate sublingually, or can I just swallow those?

I swallow them, in groups of 6, 3 times a day.

 

[whodathunkit]

...and even had some cramping in my calves when I got up the first morning!

Gary, you're the only person I've seen so far that's been happy about manifesting symptoms of potassium deficiency.

 

[garyfritz]

At least then I know it's working right!!

What little cramping I have, happens in the morning. Which can disturb morning sleep. I haven't tested it enough to tell for sure -- can you take potassium at bedtime and have it last through the night? Or do I just have to plan to have potassium at my bedside for when I first wake up?

 

[whodathunkit]

Dunno about that. My deficiency symptoms were never all that bad that I got cramps. I just got fatigued.

Why don't you try taking it at night AND keeping some by your bedside? That way, if the night dose lasts until morning, everything is fine. But if the night dose doesn't last you all the way 'til morning you're covered.

 

[garyfritz]

Yup, that's my plan. I only really cramped up the first day starting again with the DQ. (Probably because I went straight from zero to 4mg of adB12 & 4mg methyl folate.) Sometimes I have a bit of mild cramping when I'm trying to go back to sleep in the morning -- especially lying on my stomach, toes pointed, calves don't like that -- but usually it's not a big deal.

 

[Freddd]

At least then I know it's working right!!

What little cramping I have, happens in the morning. Which can disturb morning sleep. I haven't tested it enough to tell for sure -- can you take potassium at bedtime and have it last through the night? Or do I just have to plan to have potassium at my bedside for when I first wake up?

I take 3 tablets at bedtime. Then, depending upon how my legs feel, I take 3 more in the middle of night call to get rid of that water I drank at bedtime.

 

[garyfritz]

FWIW I don't think injected mB12 is going to work for me. I've been keeping my symptoms under control, sleeping well at night, etc, with 20-25mg/day of CL. This week I went back onto injected, replacing 20mg CL with 2-3mg injected, still doing my 4mg adB12 and 4mg mfolate. (@Freddd says sublingual mB12 has low absorption rates, 5-10%, so I figured 20mg CL should be equivalent to 1-2mg injected.)

Well my sleep sucked this week. Not as bad as the pre-B12 days, but bad enough. I'd wake up wired & twitchy at 3-4am, and even 10mg of CL wouldn't settle me down again. In the morning I'd feel groggy and almost woozy -- which often happens after the long-night-of-twitching episodes.

So yesterday I went back on 20mg CL (with a "prophylactic" 5mg since I was meeting friends for drinks ), and I slept great. Woke at about 4am but I was only awake for a little while before drifting off again. I also had some mild cramping in my calves this morning -- first cramping since the last time I dropped the injected and went back to CL.

So for whatever reason the injected mB12 doesn't seem to be working very well for me. I wrapped it in foil as soon as I got it so hopefully it's not light-damaged. Possibly it would work if I boosted it to 4-5mg or more, but why? The CL seems to be working for me, and I don't have to hassle with needles.

Do you think there's any value to using the 20-25mg CL that seems to be working, AND add on 1-2mg of injected just to boost the serum levels? I take the CL & adB12 in the afternoon/evening, so maybe inject another 1-2mg in the morning?

 

[sueami]

I'm interested in your experience, Gary, in part b/c I used your pharmacy for this batch of mb12 I'm taking. I have to say, they were far less careful in the shipping of it than the pharmacy I used previously, which didn't make up the batch until they knew they could ship it out overnight without hitting the weekend. Women's Health Intl pharmacy also shipped in a styrofoam cooler with ice packs. Apparently maintaining a cool temp isn't that important compared to darkness, but it speaks to a level of care.

My mb12 from McGuff arrived warm to the touch, and I wondered if it was in any way degraded. Before you give up entirely on injected, you might consider asking your doc to order from Women's Health Intl Pharmacy in Arizona. They are significantly more expensive -- I paid $130ish for two 10 ml bottles of 1mg/ml concentration.

But if CL tabs are working for you, might just go with that, at least until it changes.

I do feel effects from the McGuff mb12, despite my concerns about how it was shipped. But I've also essentially doubled my dosing of it by taking it daily yet I'm not noticing dramatic effects. I don't feel that it has improved my energy overall, but I notice a brightening in the hour or so after I inject.

fwiw,

Sue

 

[garyfritz]

That is very interesting, Sue! I did get some benefits from the McGuff B12, but it's not enough to replace the 20+mg of CL I've been taking. Experimenting with 2-3mg of injected B12 (instead of CL) totally hoses up my sleep patterns and knocks me for a loop for a few days until I go back on the CL. So I'm just not seeing any point in it. Maybe I need to try a bigger dose. You said you doubled your dose -- how much of the Women's Health B12 were you taking?

$130 for 2x10ml isn't that bad, really. That's $65 per 10ml vial. My 10ml McGuff vial was $57, though that included 20x syringes, 18ga, and 28ga needles. But if it takes 2x more of the McGuff than the WH, the WH is a much better deal.

 

[sueami]

I was taking 1 ml every other day, per my doc's wishes. He in fact wants me to test my blood levels of b12 now that I've gone to daily 1 mg shots (which I did in part b/c the 30 ml bottle isn't supposed to stay good for more than a month), I suppose because that seems like a lot to him. Hah. He should read these boards.

I got one 30 ml bottle from McGuff for $50something, vs the two 10 ml for the $130 so I thought it was a good deal. I might try switching back to CL after the McGuff shots run out and see if that does as well for me.

I did notice, in the two weeks that I was off the shots, I crashed and took a week or more to recover (after doing maybe two hours of moderate house cleaning and having friends over for a low-key dinner), even as I was taking 10-12 enzy therapy 1mg tabs a day.

I keep meaning to post a thread asking about whether people have managed to increase their physical energy levels with methylation support. I've seen great improvement in mood and brain fog and other neurological/cognitive symptoms, but have actually declined in my overall energy levels and amount of activity I can do without crashing in the four months I've been doing this. The very challenging vacation in July certainly accounts for the decline, but I'd hoped methylation support would help me recover from it. Not so much yet.

eta: if the CL tabs are managing symptoms, I say run with that for as long as it lasts. But consider Women's Health pharmacy if you find you need a bigger boost at sometime in the future.

 

[garyfritz]

I'll keep that in mind, Sue.

In the meantime, what do you think of the practitioner you're using? My MD is taking the "low and slow" idea to extremes. She told me to take 1mg injected twice a week, and "let's see what it looks like after two months." I'd be a basket case by now if that's all I did. And I'm not sure how well she understands the different parts of the genome.

I want somebody who can analyze my genome and determine what I need to do to keep this under control long term. Gobbling CL’s like candy is working for now, but I don't like the way that it keeps changing, and I don't like not understanding how to keep it functioning properly. I want to understand the methylation better, and I want to understand how the other SNPs fit into it too.

 

[sueami]

I'll let you know after this next appt on the 12th. So far, his focus has been on going g/f and dairy, yeast and coffee free to heal the gut. He seems to know a decent amount about methylation but says he's never seen anyone cured by methylation support, it's just something to address along with the deeper dysfunction, which as far as I can tell, he believes to be coming out of the gut.

His gut advice is not particularly detailed, nor do I feel it has made a big difference in my health so far, so I'm going to press him on it next visit, as well as ask about other testing to run down either nutrient deficiencies or immune system footprints of latent infections.

Long story short, I'm reserving judgement.

 

[aturtles]

Forgive me if this has been covered -- has anyone tried using liquid MeCbl (methyl-b12 / Methylcobalamin) as a drop in the gums and let sit? How about snorting it into the nose, which I would think the equivalent of nasal spray? When I talked to Key Pharmacy, they said that that their non-preserved oral drops of MeCbl are the same substance as the injectable version they distribute, so I would think you could do this with the same stuff one injects. Would this work?

 

[garyfritz]

I haven't, but I would think drops in the gums wouldn't be very effective. You need the b12 to soak in slowly over time. Drops would be flushed out of your mouth too quickly.

In another post user Hip reported good results with nasal administration of Methyl B12 Mega Drops, which deliver 1mg per drop! He said it stung a bit (actually he said it might "sting like hell" ), probably due to citric acid, but it worked for him.

Key's mB12 might work OK nasally, but unless they're really concentrated like the Mega Drops you won't be able to get enough to stick to your nasal passages to soak in. Hip said any more than 4-5 drops per nostril and it runs down your throat.

 

[aturtles]

That's good info, @garyfritz, on the nasal drops. Thank you so much! (Me, I would avoid ANY nasal drops with citric acid. That's just asking for hurt.)

What about absorption? I can't figure out from reading (tons of) posts whether the nasal mucosa absorb as well as the oral or not. I wonder if @Freddd has thoughts on that.

 

[garyfritz]

Hip said it worked well. I don't know if Freddd has tried it. (Probably, he's tried everything!! )

 

[whodathunkit]

@sueami, just saw your posts above about energy levels. So I have to ask: where are you with LCF? I credit that as more than anything with my increase in stamina. Which, physically, till isn't what it should be or where I want it to be.

But in my overall definition of "stamina" I lump in emotional and mental resiliency. There have been some things going on in my life for the past few months that would have pretty much put me in the toilet a year ago. But I'm still bopping a long. I'm still having little emotional crashes, but I just bounce back now. I don't hang onto things for months any more, and I don't wallow in them. I don't withdraw for weeks on end. IMO that's a small miracle.

Not sure if that's how it is for you as far as stamina, but that's where it is with me.

As far as physical stamina...I don't expect to be where I want to be with that for another year at least. I'm resigned, but still have hope. Even at that, though, physical stamina has improved remarkably. I can do much more than I used to be able to do.

What's going on with you now? And again, what about LCF?

Also, I got turned on not long ago to what I consider to be a very good probiotic : Probulin brand, the "colon support" formula. Pricey but effective.

 

[sueami]

Hi, Whoda!

You know, I bumped LCF from 500 to 1000 some months ago, but dropped it back down b/c I read somewhere from someone here that 500 might be enough. I'll double it again and see what that does.

Looking back at the date of that post you reference, It turns out that I was doing a poor job of managing my stress around my husband's magazine closing down. I think we got news of it about 2 weeks before I posted that. Two weeks later, I had a huge episode -- adrenal/heart arhythmia/panic attack that knocked me back even worse for almost two weeks.

I've made a concerted effort since then to process my feelings better via talking/journaling/Byron Katie work/tapping/energy work (yes, why do one thing when you can do five things that might effect change faster? No wonder I developed chronic fatigue ) and my alt physician recommended 5 mg. dhea and a half tsp of maca powder every day.

That adrenal support and perhaps the psychological work is making a big difference. I feel like I've regained the ground lost to that panic attack and some chunk of the energy I lost going on vacation.

Mood wise, fiscal fears excepted, I've been doing fairly well, I think. I have some slipperiness and excessive reactivity (my husband actually delights in hearing me rant about something because he says I haven't had the energy to get pissed off like that in recent months -- I hate to disabuse him that it's a positive sign. He's such a sweetie) but much less than in the first half of the year.

It's physical that I notice more, and I have been on an upswing now with this adrenal support and funny little adrenal meditation I found online. http://www.drlwilson.com/articles/meditation.htm

What levels of LCF did you try and find success with?

oh, and thanks for the probiotic recc!

 

[whodathunkit]

@sueami, I wish I could like your post a couple times more. Love hearing someone call their husband such a sweetie. It's great that you have a good marriage to back you up.

And FWIW, I agree with him! If he's noticing it as positive, then it *is* a positive. I wish someone would call one of my rants a positive.

Seriously, just gotta work through it. I've been moving through some old behavior patterns, myself, one of which includes hyper-irritablity of the same sort that I used to get in my 30's when my hormones started going really awry. I had mega-stress then, and everything was wonky. That period of my life is what burned out my adrenals completely. My life fell apart. I was kind of scary then. I haven't had super-duper intense volatility like that since then, so a couple of episodes in the past few months has been a little disconcerting.

Anyway, the kind of resiliency you seem to be exhibiting in your last post is what I mean. It may feel like you're not progressing, but isn't the closing of a business one of the most traumatic things that can happen to a person? You seem to be dealing. Was there ever a time in your life that that event would have put you completely into the pit? If so, and you're not in the pit now, then you're doing good.

I think the physical resiliency comes well after the mental resiliency. If I recall the progression of the downturn of my health, physical resiliency also left me first. So it's probably the last thing to "come back". @Freddd talks about these kinds of patterns in lots of his old posts, too. Not sure if you've read any of that, but it helped me. If I hadn't read what he wrote about weird flare-ups, emotional volatility, etc., I might have been much more worried about some of the rollercoaster I've gone through in the past few months. But since I know what to watch out for, when it starts, I just grab onto something and wait for it to stop or at least slow down. It always does.

Thanks for the adrenal meditation. I'll look into that. I'm not a fan of Wilson's supplements because he doesn't seem to look out for quality control (there is dicalcium phosphate in his adrenal glandular, for instance, grrrr to every manufacturer who does that), but he does put out a lot of good information.

I've settled on 1000mg LCF. Freddd posted not long ago that that's the max effect dose according to the research done so far. No additional benefit accrued by going beyond it.

It could be that the benefits are only marginal between 500mg and 1000mg, but I do think I saw some benefit from bumping up to 1000. It's worth noting, however, that I had to stay really low (250mg/day or under) for months, then I was able to bump up to 500mg comfortably, and then very quickly bumped up to1000mg. It could be that 500mg would have netted me the same effect and I just didn't stay at 500mg long enough to find out. But I think I'll stay at 1000 for the next year or so to see where that might get me in terms of physical stamina.

Funny you mention about tapping: it drove me crazy. At first I went to a practitioner who performed it on me, and pretty soon I said, you better stop that. I'm starting to want to tap you back, harder. We both laughed but we didn't do that any more.

Then I thought maybe it was just because it was another person doing it. So I started tapping myself. It still made me want to tap someone else, really hard. So I quit and moved on to other things. I think it did help, though, in a delayed reaction kind of way. The things I tapped for haven't bothered me quite as much since. Maybe it's time for another go.

Are you still doing Buteyko? Tried Donna Eden energy medicine? I got a lot out of her stuff, although again, it was a delayed reaction kind of thing. Except for a couple of sessions it kind of annoyed me while I was going through it. I'll look into Byron Katie. I've not heard of that.