B-12 - The Hidden Story

[Pheenix997]

Ok. One thing I forgot to post was my complete blood count results. Not sure if this is useful information. I've attached it here.

The biggest thing that stands out is possible kidney dysfunction, however I've been supplementing with creatine for my workouts and I think that would lead to a higher creatinine number (creatine converts to creatinine I think), which would give a false positive diagnosis because of high creatinine levels, indicating the kidney isn't filtrating enough. Does this seem reasonable or should I be worrying? I see my endocrinologist in a couple weeks and will discuss this further.

Everything else looks normal.... given my normal B12, ferritin, and now RBC and Hemoblogin, I guess whatever is causing my fatigue is not anemia ?

P.S. sorry for the black background, it changes to that when I save it from the Lab website.

 

[Learner1]

Your labs look normal enough. Why do you think you have kidney dysfunction?

My eGFR has dropped to as low as 50 with kidney pain when my body was stressed during detox. It bounced back up to the mid 90s when not detoxing, though it used to be as high as 130.

My doctor's explanation was that my kidneys were having trouble keeping up with detoxing

There are different types of anemia. Have a full iron study done - TIBC, UIBC, serum iron, iron saturation, StR, and transferrin. This site shows some possibilities:

http://www.irondisorders.org/Websites/idi/files/Content/854256/HowdoIknow_Anemia__Converted_.pdf

 

[Sidney]

Sorry for jumping in randomly here without an introduction. I have a question. Is sleepiness, headache, and fatigue a common reaction from Methylb12? The fatigue hit me like a truck today. I'm currently taking 2 mg only. Does this mean I should stop or push through it? I also take 1 mg L-mtfh, and a slew of co-factors, vitamins, minerals, etc. as augmenting factors to ensure methylation works.


I was interested to read this!

I have been taking transdermal Methyl/adenosyl for a couple of weeks now, and I find it helps, with a small nice burst of energy, but much more importantly, I THINK it makes PEM go more quickly- after overdoing it in the burst, I thought I would be punished for a week; but my bouts have usually been 1 day since then.

Though it has been a short time, and I can't assert this definitely!

But: I am writing because I found early on that it is terrible for sleep. I thought that since it improved things for me somewhat, it might help with insomnia.
So I tried the mixed 'B group' lotion at night, thinking that it would be better to have all the different Bs together -(If something is good, more is better??? Insane, I know.)

Result: no sleep whatsoever for 2 nights. Apparently the adenosyl is 'stimulating' and there is more of that in the Bgroup than in the mixed methyl/adenosyl that I used in the day.
Even that stops me from sleeping in the day, though I need to, and can, rest, in a good way.

So, yesterday, at last the straight Methyl lotion arrived. I used it last night and passed out immediately. It only lasted for 3 hours though! So I rubbed in some more at 1 am and it worked, although more slowly.

What I am trying to say is that different types of b12 seem to have very different effects, and, like you, I did find the methyl made me sleepy. It is still a learning experience, like everything to do with this disease.

 

[Pheenix997]

Your labs look normal enough. Why do you think you have kidney dysfunction?

My eGFR has dropped to as low as 50 with kidney pain when my body was stressed during detox. It bounced back up to the mid 90s when not detoxing, though it used to be as high as 130.

My doctor's explanation was that my kidneys were having trouble keeping up with detoxing

There are different types of anemia. Have a full iron study done - TIBC, UIBC, serum iron, iron saturation, StR, and transferrin. This site shows some possibilities:

http://www.irondisorders.org/Websites/idi/files/Content/854256/HowdoIknow_Anemia__Converted_.pdf

Oh really. Well I only thought Kidney problems because my eGFR was low enoguh for the lab to write a comment that it's consistent with mild decrease in kidney function - it's the only time they've made a comment about a test result.

 

[Learner1]

So, yesterday, at last the straight Methyl lotion arrived. I used it last night and passed out immediately. It only lasted for 3 hours though! So I rubbed in some more at 1 am and it worked, although more slowly.

What I am trying to say is that different types of b12 seem to have very different effects.

Freddd wrote extensively on this, in the first post in this thread. It also depends on your individual genes.

What's the name of the lotion are you using?

 

[Sidney]

O dear: I must take back my assertion in my post of Sunday (5 March). I rushed in too quickly: so thrilled to have found a wonderful potion for insomnia...Methylcobalamin lotion did not magically induce sleep for me, after the first couple of times.

@Learner1, it is one of the products made at B12oils, oils specially compounded by a biochemist in Australia, to give as much, or more, of the vitamin than injections, and far far more than lozenges.

They have been often talked about on PR - I think on this thread - and probably in other discussions. That is how I heard of them. I have 3 kinds!

Even if I haven't found the miracle sleeping cure, I think the oils are great. It hasn't been long, so I should be careful here, but I have shorter PEM, and a little more energy when not crashed. And they are the easiest thing in the world to use!!

 

[oneyellowbird]

@suraj,

To the best of my knowledge what you think is happening is most likely the opposite. When a little bit of B12 and folate starts inflammation, it is because of an induced folate deficiency. One of the things that can happen with B12/folate is that they act on "internal triage levels" as some researchers called it. It is also an aspect of refeeding syndrome. The healing that is started on a level wide basis and without enough folate then takes folate from other levels leaving them with lots of inflammation. I'm 67 and have been through this over and over again. Also, lesions can start up, often as acne type lesions on the scalp but sometimes spreading to all over the body lesions as large as a quarter. I haven't had therm that large but know somebody who did. Small quantities of folate triggers inflammation on a large scale. It is precisely because it is so small a dose. There are those who disagree with me. These deficiency symptoms keep right on going because one the deficiency starts it doesn't fix itself. Refeeding syndrome can be damaging and even fatal with induced potassium deficiency. Keeping the doses low or stopping can keep the problems going for years in many cases. If my hypothesis is correct, and it has been for me, a larger dose, like 4mg 4 times a day, would have my inflammation decreasing and lesions starting healing a lot in a few days. The same problems can also be caused by larger doses of folic acid, HyCbl, CyCbl, glutathione, NAC and some other things. However, the small insufficient doses are what sticks out. You must of course make your own choices. For years I had continuous folate deficiency symptoms like these.[ Then they became intermittent and far fewer in number as my dose went up. At 15mg/day I was down to several recurring symptoms at 2 week intervals At 30mg/day I have no folate deficiency symptoms. I did have some of the similar symptoms from copper deficiency and that was with a serum level at the low end of "in range". If an enough higher dose of methylfolate will help, you and your dad would likely know in a few days. I always did. Good luck.

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Hi all- I have a question about increasing methylfolate. I started the FP about 7 weeks ago and I’m now at: 5 mg –MB-12, 1,200 mcg Solgar Folate, 4 mg –AdB12, 425 mg LCF, 200 mg Sam-e, and 550 mg Potassium Gluconate. Taking all the support Co-factors.

Since starting the protocol, my back pain has flared up again. I had in under control 4 months ago taking CuraminEX (curcumin) and Ginger Root. I still have disturbed sleep, and my heart is bounding, and BP is up slightly. From blood tests in Dec (3mo ago), my Hcy is high. I also have NAFLD. At the time of the tests, my Dr had me on Klor-Con (K) 1,500 – 3,000 mg/day. Have stopped the K chloride and switched to the smaller dose of K gluconate.

For @Freddd or those familiar, I’m trying to get an idea of how fast to ramp up the folate to deal with the inflammation. Freddd’s post said 4mg 4 times a day. Given I’m now at 1.2mg, thinking of going to 3mg/day and continue to titrate. Is it OK to go more aggressive with the Folate? 16 mg/day seems like a big jump.
Oneyellowbird[/QUOTE]

 

[Pheenix997]

Can someone please recommend a source of adenosylcobalamin? Seems it's hard to find as some brands have discontinued. Also, can't buy it here in Canada in stores. Thanks....

 

[CCC]

Can someone please recommend a source of adenosylcobalamin? Seems it's hard to find as some brands have discontinued. Also, can't buy it here in Canada in stores. Thanks....

We started with the Source Naturals from iherb.

Then, to save the teeth and gums, we moved to the adenosylB12 from b12oils.com. I've heard it gets expensive for people not in Australia because of the shipping costs. We're in Australia, so for once, shipping isn't unreasonable for us.

 

[CCC]

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Hi all- I have a question about increasing methylfolate. I started the FP about 7 weeks ago and I’m now at: 5 mg –MB-12, 1,200 mcg Solgar Folate, 4 mg –AdB12, 425 mg LCF, 200 mg Sam-e, and 550 mg Potassium Gluconate. Taking all the support Co-factors.

Since starting the protocol, my back pain has flared up again. I had in under control 4 months ago taking CuraminEX (curcumin) and Ginger Root. I still have disturbed sleep, and my heart is bounding, and BP is up slightly. From blood tests in Dec (3mo ago), my Hcy is high. I also have NAFLD. At the time of the tests, my Dr had me on Klor-Con (K) 1,500 – 3,000 mg/day. Have stopped the K chloride and switched to the smaller dose of K gluconate.

For @Freddd or those familiar, I’m trying to get an idea of how fast to ramp up the folate to deal with the inflammation. Freddd’s post said 4mg 4 times a day. Given I’m now at 1.2mg, thinking of going to 3mg/day and continue to titrate. Is it OK to go more aggressive with the Folate? 16 mg/day seems like a big jump.
Oneyellowbird

[/QUOTE]

Most people here suggest you go up very slowly.

You report having high hcy, which suggests overmethylation. Your other symptoms could also be that. People also report the same symptoms from LCF and SAM-e and also B6 (assuming you're taking it?). Why not back off from these, then reintroduce them one at a time and very slowly?

We have no personal experience in this: LCF and SAM-e increased my son's main crippling symptom: fatigue (perhaps also brain fog, but he was so wiped out he didn't know). B6 has no effect either way (so it's not the rate-limiting nutrient for him). We're ready to give the LCF and SAM-e away to anyone in Australia who wants it.

Also, the heart stuff could be that or just not enough potassium. Maybe try more potassium doses? We do at least a teaspoon of potassium gluconate a day, and sometimes more (in a glass of milk, or in coconut water if really craving).

 

[oneyellowbird]

Most people here suggest you go up very slowly.

You report having high hcy, which suggests overmethylation. Your other symptoms could also be that. People also report the same symptoms from LCF and SAM-e and also B6 (assuming you're taking it?). Why not back off from these, then reintroduce them one at a time and very slowly?

We have no personal experience in this: LCF and SAM-e increased my son's main crippling symptom: fatigue (perhaps also brain fog, but he was so wiped out he didn't know). B6 has no effect either way (so it's not the rate-limiting nutrient for him). We're ready to give the LCF and SAM-e away to anyone in Australia who wants it.

Also, the heart stuff could be that or just not enough potassium. Maybe try more potassium doses? We do at least a teaspoon of potassium gluconate a day, and sometimes more (in a glass of milk, or in coconut water if really craving).[/QUOTE]


Hi CCC, thanks for the reply. As suggested, I may have over-methylated with LCF and SAM-e. I cut LCF in half to ~200 mg which improved my sleep. I had titrated SAM-e to 400 mg and backed down to 200 mg because I was wired. All seems well so far with these new doses.

Also, I have increased my potassium gluconate to between 1,100 - 2,200 mg/day. (1/2 to 1 tsp).

Part of quotes from Freddd (I posted earlier) <suraj said “active form of 150 mcg Folate and 83 mcg B12, just 1 a day ´ Freddd said “When a little bit of B12 and folate starts inflammation, it is because of an induced folate deficiency. Small quantities of folate triggers inflammation on a large scale. It is precisely because it is so small a dose. There are those who disagree with me. For years I had continuous folate deficiency symptoms like these.[ Then they became intermittent and far fewer in number as my dose went up. At 15mg/day I was down to several recurring symptoms at 2 week intervals At 30mg/day I have no folate deficiency symptoms.”

I’m still trying to figure out what is a small dose of folate and how fast to titrate up from 1,200 mcg to ?. Any experience in increasing folate above 1,200 or 2,400 mcg? If so, how fast did you titrate and how far?

 

[Kathevans]

@CCC I think as with most things, your own body will tell you how fast to go. For over a year I couldn't seem to go higher than 1800-2,000 mcg folate. Then, after a lot of consultation with Greg Russle-Jones, the PhD B-12 Oils guy, I stopped much of what I was doing and titrated up on molybdenum--from slight drops to 150mcg--and selenium--from Brazil nuts to 200mcg of drops. Once I got my B2 in place (another couple of months to about 100+mg/day), and the B12 Oil was stable and only requiring some topping up with the Enzymatic sublinguals in the evening, then I began to work on Folate again--what has happened this time is amazing. So much easier to titrate up, still side effects, but much less severe. I zipped up to about 3600 increasing 200-400/day or every other day. Now I'm following symptoms--largely a runny nose and of course sleep, sore feet when I get up at night--and am currently over 5,000mcg/day.

I also found that once I began to increase my ADENO levels--from 3,000mcg/day to 6,000 to 12,000, my body insisted on more Folate. I wrote a thread once about ADENO seeming to drive Folate levels, and for me at any rate, I believe this is true.

http://forums.phoenixrising.me/index.php?threads/adenosyl-b12-driver-of-folate-needs.41685/

The challenging truth is that symptoms and needs shift as your body has other things on board. Stopping many things last summer felt like a nightmare, but my symptoms have shifted as a result and for that I'm grateful. I have used the NutrEval Test twice in the last year to help me see what was needed and am about to have a minerals test to make sure I'm not depleting things as I move forward. There have been more than a few copper nightmares on the forum.

One other seemingly small thing: I began to take 5mg of Lithiunm Orotate--the Seeking Health Brand. Given my TCN genes this may have helped. Though who knows??

 

[CCC]

@oneyellowbird I think the comment by @Kathevans was for you as much as for me.

 

[Pheenix997]

This is disheartening. The past few days I was experiencing big improvements in mental clarity and energy and everything. Vision was so sharp. It was adding the adenosylb12 and then, more importantly, the L-carnitine that really turned me on and woke my body up.

And then just as I had hope, today the brain fog hits HARD again. I thought I was passed the Methylb12 start up effects. The brain fog is actually crippling. I can't barely walk, slurring my words (more than usual), feel like there's sludge in my brain, my neck feels heavy, my limbs weak, my vision fogged up. Terrible. I don't know what to do...

No its not potassium or folate deficiency as I'm taking both. It really seems to be the Methylb12. I think I'm going to drop it or I will lose my job.

 

[Pheenix997]

The Methylb12 seems to convert to melatonin for me very quickly. Usually I supplement with the latter to get to sleep at night, so it'd be great if I can replace it with b12. However, this is too much. I slept long and deep last night, and still had to take an hour nap right after work today. I was sick last week also and slept very long hours, so I can't see how I'm sleep deprived. I've been tested at a sleep clinic also which found nothing. I'm of the hypersomnia variety of CFS although I do have trouble getting to sleep.. anyone deal with extreme fatigue/ brain fog from methylb12?

 

[CCC]

The Methylb12 seems to convert to melatonin for me very quickly. Usually I supplement with the latter to get to sleep at night, so it'd be great if I can replace it with b12. However, this is too much. I slept long and deep last night, and still had to take an hour nap right after work today. I was sick last week also and slept very long hours, so I can't see how I'm sleep deprived. I've been tested at a sleep clinic also which found nothing. I'm of the hypersomnia variety of CFS although I do have trouble getting to sleep.. anyone deal with extreme fatigue/ brain fog from methylb12?

Don't we all wish we had a doctor? If you do, you should ask him or her. These comments do not replace medical advice, but just pass on our experience.

We have the same effect from SAMe and LCF. We're also the hypersomnia version, needing melatonin to get to sleep at a reasonable hour. MB12 is great for him, though. Like you, it helps him sleep. unlike you, it doesn't keep him there.

I could guess you have refeeding syndrome, or mobilised something with the high B12, or inflammation. In order of preference, I would try:

• vitamin C - not much at a time (avoid 'bowel tolerance' issues) - my son munches on those chewable ones all day when things are bad. It always works
• check your other B vitamins - are you taking the Jarrow B-right? And also check your other minerals. You might simply have run out of other stuff your body needs.
• potassium as potassium gluconate in coconut water - absorbs better
• salt (prefer celtic sea salt) - always works, and it's sickening and disgusting if you don't need it , so it's easy to tell. This can be needed if you overdo the B12, mfolate or the potassium.
  
• magnesium - apply it to your skin as a liquid (dissolve the salt in a footbath or just enough water to rub on)

Have you thought about B2? That rescued my son from the same relapse.

Finally, my son has found that sometimes he just needs dry carbs - a specific brand of corn chips in his case. He has never got the stage of slurring words, so you are a bit out of our league.

 

[Kathevans]

@Pheenix997 Start up, at least for me, can go on for a loooooooong time! I've slowed down several times to take other supplements on board. As @CCC mentions above, B2 has been important--and I must have gone on and off it three or four times before I finally got it right and had enough molybdenum, selenium and iodine for it to work right.

As I said above, once I added ADENO B12, everything shifted again, and I'm still wobbly. When I shifted to the ADENO B12 Oil, thinking that my dose with the sublinguals was high enough to tolerate it, I really suffered for a week. Total exhaustion and depression and difficulty doing anything. Slow breathing, heavy chest. Horrible. But even as I'd done this, I kept increasing folate. Finally, I stopped the ADENO Oil and went back to the sublinguals, keeping the higher dose of Folate and voila! as they say: I'm feeling MUCH BETTER. I'm now up to 8,000mcg of Folate. (and my nose was running this morning only two hours after my previous 2,000mcg dose). It may be I'll be able to tolerate more ADENO after I get my FOLATE number higher.

Each of us is unique and figuring out the right levels of any one of the DQ can be a huge challenge. Just keep adding and subtracting. And good luck. I truly know how hard it is.

 

[Jigsaw]

@Pheenix997 Start up, at least for me, can go on for a loooooooong time! I've slowed down several times to take other supplements on board. As @CCC mentions above, B2 has been important--and I must have gone on and off it three or four times before I finally got it right and had enough molybdenum, selenium and iodine for it to work right.

As I said above, once I added ADENO B12, everything shifted again, and I'm still wobbly. When I shifted to the ADENO B12 Oil, thinking that my dose with the sublinguals was high enough to tolerate it, I really suffered for a week. Total exhaustion and depression and difficulty doing anything. Slow breathing, heavy chest. Horrible. But even as I'd done this, I kept increasing folate. Finally, I stopped the ADENO Oil and went back to the sublinguals, keeping the higher dose of Folate and voila! as they say: I'm feeling MUCH BETTER. I'm now up to 8,000mcg of Folate. (and my nose was running this morning only two hours after my previous 2,000mcg dose). It may be I'll be able to tolerate more ADENO after I get my FOLATE number higher.

Each of us is unique and figuring out the right levels of any one of the DQ can be a huge challenge. Just keep adding and subtracting. And good luck. I truly know how hard it is.

@Kathevans

Hi, can you tell me why you needed iodine to facilitate the methylation protocol, please? I put a thread up about a couple of weeks ago, but no-one has come up with an explanation of how/why iodine is important in methylation.

Thanks!

 

[Kathevans]

@Jigsaw The iodine is important for thyroid function. Probably somewhere in the 'B2 I love you' thread--or elsewhere--possibly the 'Transdermal Oils' thread--B2 needs to be working for B12 to be properly recycled, which is part of its purpose. So make sure your thyroid is up to par. For B2 to do its work, you need iodine, molybdenum and selenium. these are Greg Russell-Jones, the B12 Oils guy's recommendations.

It has recently occurred to me that when I begin to experience Folate symptoms like a runny nose, it's possible that what I really need is B12--given my genetics. I'm still experimenting.

Transdermal Oils Thread is here: http://forums.phoenixrising.me/index.php?threads/transdermal-b12-oils.33172/

 

[Creachur]

Can someone please recommend a source of adenosylcobalamin? Seems it's hard to find as some brands have discontinued. Also, can't buy it here in Canada in stores. Thanks....

I would be interested to know of sources of adenosylcobalamin in the UK.

I am currently using Swanson "Activated B-12" which contains 1,000 mcg adenosyl-B12 (but with 1,000 mcg hydroxo-B12 which I don't actually want).



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