Poll: Freddd's B-12 Treatment Plan

[Johnmac]

That's pretty cool - glad you are coming good.

Detailing a car is a pretty good test.

All the best for continued improvement....

Actually, I'm doing pretty darn good, Johnmac. I'm able to exercise every day for an hour or so...even did HIT the other morning AND detailed my car (wash and waxed) later the same day, without PEM. I was a little tired the next day but no big. So I really, really can't complain. I'm tinkering with some interestingly related problems between the gut and nervous system via acetylcholine, but I don't even half understand what's going on except there's a bigger connection than I ever thought possible and it's probably not all about gut bugs. Have no idea when I'll get that crap thrashed out, if ever, but as far as energy...can't complain. Motivation and focus still remain problems, though, hence the tinkering with brain chemicals. Which also has something to do with mitochondria.


Kath, I natter on to my mother about *everything* we talk about around here. She's really, really happy that I'm so much better but most of the time doesn't really connect what I tell her I went through with things that can actually happen to other people like her. Bottom line is she does not really listen to me unless something starts to affect her, and then it's like I never said anything. But I gave her some potassium powder for something else a while back, so if she gets refeed symptoms I'll tell her to drag it out. She doesn't really have the mitochondrial problems that we do around here, though...she's just getting up in years (79). So she probably won't have too much trouble with the B12.

 

[Kathevans]

even did HIT

Hate to show my ignorance, but what's this?!

I don't know anything about acetylcholine, but did do quite a bit of research on choline and the PEMT gene a while ago. It's related to breast cancer issues which hover over my family. That said, for the moment I don't seem to tolerate it...just one more excitory supplement...

You seem to have a good attitude toward your Mum! Lighthearted, I mean!

 

[whodathunkit]

You seem to have a good attitude toward your Mum! Lighthearted, I mean!

Yeah, it's a good thing she's cute. Gotta love 'er cuz I can't kill 'er.

Seriously, I say that to her face sometimes. She says similar to me. It's how we do.

HIT: High Intensity Training. Also called "HIIT: High Intensity Interval Training". You exercise at full capacity for very short bursts of like 30 seconds, then walk or move normally for a couple minutes in between. You do it for a certain number of intervals (one interval being 30 second burst plus the two minute normal). In my case, it's sprints + walking, for six intervals. But some people do HIT with weight training (I can't). HIT conveys more physiologic benefits than much longer sessions of sustained cardio or regular weight training, in much less time. But it can cause serious PEM. It no longer does with me, but I crashed myself a couple times trying to do it early on in my journey with Freddd's protocol. It was only after adding in gut therapy (pre- and probiotics) that I developed the stamina to do HIT or lift weights (which I also do but not HIT style) without PEM.

Also worth noting is I still get really tired and logey when I overdo. I'm still having a little hangover from the car. But it doesn't do me in, and I can still function through it. It's probably more like what someone who isn't sick experiences when they overdo. I don't have much basis for comparison there. If I got arrogant and decided to overdo several days in a row I'm quite certain I would crash again. But I try really hard not to be stupid and arrogant about it, so am doing pretty good. At least until the next bout of stupidity strikes, which it inevitably will.

 

[ahmo]

I'm able to exercise every day for an hour or so..

Jeez, the postage cost on these B12 oils is RIDICULOUS! Half again as much as one bottle of product!

This is what happens to us in Aus, why iherb's low shipping costs has committed customers.

 

[CCC]

Jeez, the postage cost on these B12 oils is RIDICULOUS! Half again as much as one bottle of product!

I was going to say, "welcome to our world", but Ahmo beat me to it with nicer phrasing:

This is what happens to us in Aus, why iherb's low shipping costs has committed customers.

So grateful B12oils is Australian,

 

[Kathevans]

We haven't noticed any need for potassium. Everyone seems to be managing fine without it. Seems that with the B2 you don't need all the extras much; I hardly take any folate now also, & no carnitine.

This is interesting, but I also wonder if it's related to having previously titrated way up on the folate. I have been having what I thought was a higher need for potassium at night, with my heart just doing a brief little dance, then relaxing as I gave it the potassium every three hours. After doing two hours of house cleaning yesterday (it was definitely a push at first, then I seemed to get into the rhythm of it), I slept an hour and my heart was doing its thing. It was fine for a couple of hours, but then would dance a bit again. By 5:00 this morning it was more persistent and I did something I've done one other time. I decided that the irregular beats were a call for more folate. Knowing what I know now, I took 500mcg of Enzymatic B12 (to receive the folate), 200mcg of folate, and 1/4 FMN from Source Naturals--after taking my potassium, of course. That was all it took and after a few irregular beats of welcome, everything settled down and I slept for two hours, then dozed another 2 (the B2, I've found makes it much harder to sleep in the morning, though I do get more tired at night and doze off earlier than usual).

I've also been feeling much more adrenalyzed at night, sometimes feeling quite anxious. @Gondwanaland suggested I need more B6 and I had had that thought. But I've also found that B6 may use up my folate and drive up my body's demand, and can give me those tight neck/face symptoms. Is the higher adrenaline just a sign the B2 has begun to affect the MAO, speed it up?

@Oci also talks about withdrawal symptoms from Ambien (I've been taking 1/3 a couple of times/week) and valium at the very low dose of about 1-1.25 mg (a quarter of a 5mg tablet) on most of the other nights. Yes, it absolutely is a muscle relaxer. And yes, I need to just stop, myself. I know. (Greg is a little disgusted with me, I think) But when the mind won't let go and a few hours can make such a difference....

Anyway, maybe I need to titrate up a bit on the folate before I come back down. In any case, my body seems to respond positively to it.

But then, there's a lot of stuff going on here. Little tiny titrations of stuff, but that's me. My brother-in-law calls me the Princess and the Half Pea.

 

[Kathevans]

HIT: High Intensity Training.

Well, this is nothing short of amazing! Good for you. As you can see, I pay for overdoing in all sorts of ways. And I still can feel it the next day if I just do several yoga arm moves in a row. It'd be nice to move beyond that... Certainly no muscle growth here. But then, I'm still fiddling with folate, MeB12 and B2. I've barely dipped into the Adenosyl and had to pull back.

 

[whodathunkit]

@Kathevans, IMO LCF is a key if not the key to exertion tolerance. It can be hard to acclimate to, though. It was for me, although not as hard for me as for others I've seen. Totally understand if you can't take it. Just sayin'.

Adenosyl also revved me up a great deal in the beginning.

I've also come to value a "pulsing" type strategy where you take something that's supposed to be good for you and it gives you a bad reaction, so you leave it but keep circling back around to it. With a lot of supplements I've found that the pulse is the path to toleration. One day after a bunch of circling I find it works for me. Just hormesis, I guess. Other's mileage on that may vary.

 

[Gondwanaland]

@Gondwanaland suggested I need more B6 and I had had that thought. But I've also found that B6 may use up my folate and drive up my body's demand, and can give me those tight neck/face symptoms. Is the higher adrenaline just a sign the B2 has begun to affect the MAO, speed it up?

I am just finding out there is a sweet spot for balancing B2 and B6. I am microdosing them (around 0.2mg each, yup 200mcg )

 

[Kathevans]

@whodathunkit Yes, I like the idea of pulsing. I've found that I can take the adenosyl occasionally, but not on consecutive days. Even the B12 Oils seems this way for me, though there have been times I've used it as much as four days in a row. @Johnmac says that Greg the B-12 Oils guy says that with B2 and enough B12 (I believe) your body will make more of its own carnitine. (Please correct me if this is wrong) In any case, carnitine showed up as low for me on my OAT test last year, so I do know it's important...

Over time, and particularly now with the addition of B2, I'm finding that my reactions to everything are different. But in the past it was just the MeB12 and folate with a low dose multi (1/2 B-Minus per day) that resolved the neck/face tightness. Cutting back to Nature Made's even lower doses (5mg of B6 as opposed to about 10) doesn't seem to have made any difference.

I am just finding out there is a sweet spot for balancing B2 and B6

Hmmm. As I said, I was thinking of the way the both are involved in the Folate cycle. Certainly I am noticing too much B6 without enough folate seems to cause a folate block/or folate deficiency symptoms. Or this is how it 'feels' to me.

How do you titrate down to such tiny doses?! And oh my, you seem to be even more sensitive than I.

Lately I feel as if I'm always stuck between that rock and that hard place. I'm just trying to resolve some very uncomfortable side effects. I keep thinking there'll be a eureka moment, but I haven't run into it yet--other than titrating up higher--which I did before adding the B2 consistently and which I really don't seem to need at this point.

Though, who knows...

 

[whodathunkit]

I keep thinking there'll be a eureka moment, but I haven't run into it yet--other than titrating up higher--which I did before adding the B2 consistently and which I really don't seem to need at this point.

Well, so you've had at least one. That's a good thing.

I think healing is a series of small eureka moments, not a single big one. There might be one that stands out as bigger in your mind, but the reality is that it always passes, too. There's always the realization that you're not done yet after all, and you have to move forward. Healing is too complex, especially for people operating within the spectrum of the symptoms we all have here.

 

[Gondwanaland]

How do you titrate down to such tiny doses?!

My vitamins are compounded locally at low doses, and I split the capsules open and take only a few grains at a time

 

[Kathevans]

healng is too complex, especially for people operating within the spectrum of the symptoms we all have here.

Indeed. All we can do is try to stand back when we can and see if there's any perspecitve to be had. Keeping my Excell chart as to supps and symptoms has been a great help when trying to get this view. Long term, I'm afraid, is all we can look to. Trends. And they do seem to appear over time.

You've trended very well! So I can see that it's worth the effort...

Thanks.

 

[Kathevans]

My vitamins are compounded locally at low doses

This is a great idea. I've thought of it myself. Now if I could only figure out what the dose is of each thing! what I do appreciate now--more than I did initially--is that we don't need 50mg of each B vitamin (or perhaps even 20mg!), which is what I did for years and what undoubtedly made me ill, or made my condition worse. As I've said before, titrating back down has been like getting off an addition with all the concomitant neurological symptoms...

Yikes.

 

[Johnmac]

Indeed. All we can do is try to stand back when we can and see if there's any perspecitve to be had. Keeping my Excell chart as to supps and symptoms has been a great help when trying to get this view. Long term, I'm afraid, is all we can look to. Trends. And they do seem to appear over time.

You've trended very well! So I can see that it's worth the effort...

Thanks.

Complexity is a big problem for most of us, I think. So many variables. Spreadsheets do help. My latest one lists all the supps I need, & where I can get that nutrient in the world of food.

I agree that what isn't clear in one evening often becomes clear in the passage of time.

 

[Gondwanaland]

we don't need 50mg of each B vitamin (or perhaps even 20mg!

I am taking everything below 0.5 mg

 

[Gondwanaland]

Spreadsheets do help.

I totally agree, but unfortunately none of my experiences with positive outcomes are repeatable.

 

[Kathevans]

I totally agree, but unfortunately none of my experiences with positive outcomes are repeatable.

Interestingly, what I have found is that sometimes initial good response, yields to less good response and ultimately may return to better response. This is in fact, what has happened with the B2. I've worked with it no fewer than 3 times, this most recent, since mid January. To the end of February, I got no higher than 20mg B2, a combination of 1/2 FMN and the other half (in my Seeking Health B-Minus) another 10 mg. Only at the end of March did I begin to add extra amounts of B2, again in both the FMN form and as small portions of a Thorne r-5-p B2 that I swallowed. I actually began to take FMN at night--something I've only begun to let myself do with the Enzymatic B12--to good effect (which is to say it sometimes enables me to return to sleep if I'm having a bad bout of insomnia). And I began to see that it alleviated this horrible face/head/neck muscular tightness, and I thought that maybe the FMN had easier access to my system than the B2 which needed to go through the liver for conversion.

In April, trying to see what was what, I actually stopped all folate for a week or two and went up and down with the FMN and r-5-p, as high as 70mg of B2 in one form or another. I began to have those higher potassium needs that Fred talks about and I freaked out and began to lower the B2. But interestingly--for the moment this doesn't seem to have lasted. After a couple of wild weeks, my potassium needs are lower again, not quite as low as they were, but still. I've begun to think that what @Johnmac and @Athene* and yes, Greg, the B-12 Oils guy as well, have said is what's happening. That is, that there is period as the deficiency is quenched that other stuff goes out of control. You get higher adrenaline, bouts of euphoria (yes to both) and a higher need for potassium (yes, again). I'm not that great at explaining this, but @Johnmac attempted it here on this thread: http://forums.phoenixrising.me/index.php?threads/transdermal-b12-oils.33172/page-19#post-722842

Given how crappy I feel physically--no stamina, weak muscles, sore tendons, not to mention the sleep issues--I feel I have no choice but to push forward.

So that's what I'm doing. I'm beginning to trust Greg, who's done the research, and others who've gone through the physical woes, that the only way out for me is through the rabbit hole. Next I'm going to order the MeB12/Adenosyl B12 Oil combo and start with a drop if need be. I think, particularly given my hyper-reaction to it, that I really need it.

I particularly like @whodathunkit 's pulsing recommendation. As above, I see it working with the B2; I've already had a range of reactions to the AdoB12, and I'm just going to keep slogging.

I don't see that I have a choice.

I'm hoping for repeatable down the road, once I climb out of the hole! (where's the finger's crossed icon?!/ or coming in on a wing and a prayer?!)

 

[Gondwanaland]

Given how crappy I feel physically--no stamina, weak muscles, sore tendons, not to mention the sleep issues--I feel I have no choice but to push forward.

B2 can lower histamine too much. Have you read about Manganese being needed for better B2 metabolism?

 

[Kathevans]

Have you read about Manganese being needed for better B2 metabolism?

I have, though my manganese levels in mid-March on the Spectracell test were 'normal'. I have some on hand. I've taken 5mg occasionally but haven't noticed a difference. Maybe I ought to add it more frequently and try to take more notice...