B-12 - The Hidden Story

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michaeldfaulkner

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Thanks Fred. Reassuring that this still could possibly be a deficiency imbalance, rather than something bone marrow related (that's what hematologists look for, so going to one, I should not be surprised).
 

Sunday

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As always, Freddd, it's fascinating to read about the different responses people have had on this protocol. I can testify that methylfolate is key in this process: upping my dosage was rocky, but it helped me get to a new level. And your most recent tip about taking the methylfolate on an empty stomach throughout the day is definitely a good one; I've started doing that and I'm getting more startup effects (same dosage of methylfolate, just taking it differently). I'll also testigy to the "healing slowly over time and hardly noticeable". My own improvements are significant to me, especially since they keep happening and taking me closer to health. But my markers for healing are very small, a healthy person might not even notice them.
 

Sunday

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Lena, I had that thing happen with my eyebrows, too! They started growing back in I think 3 months into this. I agree with you that it's helpful and encouraging to have people report their successes on here as well as the knotty problems. So as my own contribution, here are some of my more recent, small markers of returning health.

I've caught myself spontaneously running and shouting at my neighbors chickens (they love to scratch up the dirt in my plant containers for some reason, even though there is plenty of other dirt handy). Neither shouting nor running have been in my vocabulary for at least 2 years. Instead of being kind of functional for 3 days out of 10, as I was when I started this protocol, I'm beginning to feel kind of functional - and occasionally more than kind of functional - more like 5 to 7 days out of 10. I've started, very cautiously, to plan tasks ahead. I still have to leave a lot of extra time, in case I need to lie down for greater or smaller times - so what would have been a day's plan before is a 3- or 4-day plan now. But I can plan! And it's less of an effort to do things such as paying bills, washing dishes (still don't love it), gardening. That's as much a function of having more brain as it is of having more brawn. Instead of doing 2 or 3 sun salutes of a morning, I'm doing 4 to 6. Recently at a friend's I made a sauce out of odds and ends he had around the house, which means two gains: I had the energy to go and visit and cook with him, and I had the brainpower to cook creatively, the way I used to. Very very small. but moving the right direction!
 

Sunday

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Freddd, thanks for the detailed info on supplements taken with food and without it; I'll change my carnitine to go with my empty-stomach methylfolate. I always learn useful stuff when I read your posts - useful stuff in many dimensions.

michaelfaulkner, I often take my supplements with a smoothie as my food; from what I just read of Freddd's recommendations, my smoothie fills the bill (and its thickness makes it easy to get down all those pills). I tinker with the recipe depending on what I'm experimenting with and what's around, but the basics are: some kind of milk (soy milk or almond milk work fine; I only use organic cow milk); kefir (homemade); banana; a dash of Himalayan salt; a squirt of agave syrup; ginger (my acupuncturist told me that cold things aren't good for my condition, and said ginger would warm it. Also, it's good for the nausea I often have in the morning); cinnamon (regulates blood sugar). Sometimes I throw in a raw egg (organic or local; I don't think slave-chicken eggs are healthy for us or them) or other supplements like ribose. I used to use whey protein also but I quit when I learned about the glutathione-precursors problem. However this version of smoothie has quite a bit of protein, some fat, the bananas add potassium and carbs (and the milks have some carbs too of course).
 

Freddd

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Lena, I had that thing happen with my eyebrows, too! They started growing back in I think 3 months into this. I agree with you that it's helpful and encouraging to have people report their successes on here as well as the knotty problems. So as my own contribution, here are some of my more recent, small markers of returning health.

I've caught myself spontaneously running and shouting at my neighbors chickens (they love to scratch up the dirt in my plant containers for some reason, even though there is plenty of other dirt handy). Neither shouting nor running have been in my vocabulary for at least 2 years. Instead of being kind of functional for 3 days out of 10, as I was when I started this protocol, I'm beginning to feel kind of functional - and occasionally more than kind of functional - more like 5 to 7 days out of 10. I've started, very cautiously, to plan tasks ahead. I still have to leave a lot of extra time, in case I need to lie down for greater or smaller times - so what would have been a day's plan before is a 3- or 4-day plan now. But I can plan! And it's less of an effort to do things such as paying bills, washing dishes (still don't love it), gardening. That's as much a function of having more brain as it is of having more brawn. Instead of doing 2 or 3 sun salutes of a morning, I'm doing 4 to 6. Recently at a friend's I made a sauce out of odds and ends he had around the house, which means two gains: I had the energy to go and visit and cook with him, and I had the brainpower to cook creatively, the way I used to. Very very small. but moving the right direction!
Hi Sunday,

it's good to hear that you are doing well. The difference of the carnitine without food can be huge. Interesting about your eyebrows. The hair on my lower legs all disappeared in the mid 80s with the development of neuropathies. About a year after starting mb12 I noticed that I had a fair amount of hair growing back. It was finer and blonder than previously but my legs are no longer neuropathic slick. Also I had thickening of all my nails corresponding to when I started mb12, another thickening when I started adb12, another with l-carnitine fumarate, again with SAM-e and another with methylfolate. Even part of my toenail removed for ingrown nails regenerated, but only 1/4 as thick as the rest of the nail.
 

Freddd

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As always, Freddd, it's fascinating to read about the different responses people have had on this protocol. I can testify that methylfolate is key in this process: upping my dosage was rocky, but it helped me get to a new level. And your most recent tip about taking the methylfolate on an empty stomach throughout the day is definitely a good one; I've started doing that and I'm getting more startup effects (same dosage of methylfolate, just taking it differently). I'll also testigy to the "healing slowly over time and hardly noticeable". My own improvements are significant to me, especially since they keep happening and taking me closer to health. But my markers for healing are very small, a healthy person might not even notice them.
Hi Sunday,

Noticing the details is VERY important. I found that by paying attention to the small details I was able to keep finding increments of improvment and certain thiongs were pivot point symptoms for specific nutrients. Mb12 with the basics only resulted in about half of the improvment I've had. Each additional critical factor incremented that from adb12 and Alpha Lipoic Acid to zinc at 50-65mg/day. I was amazed at how many things incremented the improvement after mb12 but not before. Before, nothing improved anything.

Also, as we are paying attention and fine tuning the program as we go along we find things that would NEVER be found by standard research methods or if found, much more slowly.

Using startup responses as signposts for effectiveness turns the usual paradigm on it's head. Do what makes the most difference with nutrients rather than avoid that which makes big differences.
 

Freddd

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Fred: B12 test results I received indicated a level over 1,000 in the serum. Doctor wants to do another bone marrow biopsy (I have not talked to him yet for more info. A biopsy done one a year ago, with MCV 6 points lower, showed nothing remarkable).

In your research and on these boards, have you seen this kind of strange response due to a deficiency of either folate or B12, i.e., high serum B12 and elevated MCV (I guess low red blood cell)?
Hi Michael,

This appears to summarize possible causes.

http://www.justanswer.com/questions/1nl08-high-mcv-and-mch-but-12-and-folic-acid-normal
There are many causes of high MCV but most common are Vit b12 and folic acid deficiency or alcohol use. There are many other conditions that cause high MCV, or macrocytosis, including: liver disease or obstructive; jaundice; cancer chemotherapy or immunosuppressive therapy; bone marrow suppression, infiltration or aplasia; myelodysplasia; hypothyroidism; absence of spleen; erythropoietin therapy; Down syndrome; selenium deficiency; rare inborn errors of metabolism of folate or B12.


Read more: http://www.justanswer.com/questions/1nl08-high-mcv-and-mch-but-12-and-folic-acid-normal#ixzz0gUe95TGP
 
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michaeldfaulkner

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Smoothie

I'll have to get more creative. This may get me out of my morning rut. I do try to go low carb. Thanks for the suggestions.

michaelfaulkner, I often take my supplements with a smoothie as my food; from what I just read of Freddd's recommendations, my smoothie fills the bill (and its thickness makes it easy to get down all those pills). I tinker with the recipe depending on what I'm experimenting with and what's around, but the basics are: some kind of milk (soy milk or almond milk work fine; I only use organic cow milk); kefir (homemade); banana; a dash of Himalayan salt; a squirt of agave syrup; ginger (my acupuncturist told me that cold things aren't good for my condition, and said ginger would warm it. Also, it's good for the nausea I often have in the morning); cinnamon (regulates blood sugar). Sometimes I throw in a raw egg (organic or local; I don't think slave-chicken eggs are healthy for us or them) or other supplements like ribose. I used to use whey protein also but I quit when I learned about the glutathione-precursors problem. However this version of smoothie has quite a bit of protein, some fat, the bananas add potassium and carbs (and the milks have some carbs too of course).
 

Misfit Toy

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Hmmm...this is all so interesting but awful. I use liquid spray magnesium called ANCIENT MINERALS magnesium. It has done wonders for my fibromyalgia. I recommend it highly, but who knows. It could be messing me up to and I might not even know it.
 

Freddd

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Hmmm...this is all so interesting but awful. I use liquid spray magnesium called ANCIENT MINERALS magnesium. It has done wonders for my fibromyalgia. I recommend it highly, but who knows. It could be messing me up to and I might not even know it.
Hi Spitfire,

I've never used that form of magnesium but magnesium is a vitally important cofactor in all this as part of the whole nutritional plan. Why is it "awful"?
 

JPV

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I just found an interesting bit of information that may help tie together some of the theories of Lemle and de Meirleir in regards to how Hydroxocobalamin may affect H2S toxicity...

Prevention of hydrogen sulfide (H2S)-induced mouse lethality and cytotoxicity by hydroxocobalamin (vitamin B(12a))

Truong DH, Mihajlovic A, Gunness P, Hindmarsh W, O'Brien PJ.

Department of Pharmaceutical Sciences, University of Toronto, Toronto, Ontario, Canada.

Recently, H(2)S (an environmental toxin) was proposed to induce cytotoxicity not only by inhibiting cytochrome oxidase but also by generating reactive oxygen species [Truong, D., Eghbal, M., Hindmarsh, W., Roth, Sh., O'Brien, P., 2006. Molecular mechanisms of hydrogen sulfide toxicity. Drug Metab. Rev. 38, 733-744]. In the following, evidence is presented supporting the use of hydroxocobalamin (vitamin B(12a)) as an antidote against H(2)S poisoning. More than 60% of the mice administered 35 mg/kg (0.63 mmol/kg) of NaSH (LD(90)) survived (at 24 h) when hydroxocobalamin (0.25 mmol/kg) was given after NaSH administration whereas less than 15% of the mice survived without hydroxocobalamin. Hydroxocobalamin (50-100 microM) or cobalt (50-100 microM) also prevented hepatocyte cytotoxicity induced by NaSH (500 microM). Furthermore, adding hydroxocobalamin 60 min later than NaSH still showed some protective activity. Catalytic amounts of hydroxocobalamin or cobalt added to a solution containing NaSH caused the disappearance of NaSH and induced oxygen uptake, indicative of NaSH oxidation and Co reduction, respectively.

PMID: 17976885 [PubMed - indexed for MEDLINE]
 
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Spitfire/Freddd

Hmmm...this is all so interesting but awful. I use liquid spray magnesium called ANCIENT MINERALS magnesium. It has done wonders for my fibromyalgia. I recommend it highly, but who knows. It could be messing me up to and I might not even know it.
Hi Guys,

I love the magnesium oil (magnesium chloride) and have used both the Ancient Minerals brand and the Essence of Life. You have to be careful with the source of magnesium oil and need independent labs to be doing chemical analysis on it. You can usually find the chemical analysis information on the internet for both of these brands. Some magnesium oil comes from salt beds (Ancient Minerals from NW Europe), some is evaporated from sea water. I have to be careful about the amount of mineral I use (I put it in bath not sprayed on). If I use a lot I feel jumpy and like I have eaten way too much salt.

http://www.genuinezechstein.com/genuine-zechstein-coa-a101-a901.pdf

The magnesium oil is a little bit of a different animal. There is some reference in the books I have read on magnesium to experiments done by Dr. Norm Shealy. I tried to read his book "Sacred Water Holy Oil" - at least I think that is the name but the book was a little on the bizarre side. Shealy says that magnesium oil can actually increase DHEA. I have not seen any documentation or published research on this so don't know if it is true or not. If it is true, the magnesium oil could be increasing your DHEA levels.

The book "Transdermal Magnesium" by Mark Sircus is a good reference.

I have posted additional information with my personal magnesium experience here:

http://forums.aboutmecfs.org/showth...nsomnia-heart-palpitations-muscle-cramps-pain

Good Luck,

HW
 

richvank

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I just found an interesting bit of information that may help tie together some of the theories of Lemle and de Meirleir in regards to how Hydroxocobalamin may affect H2S toxicity...
Hi, JPV.

Thanks for posting this. Hydroxocobalamin is known to bind a range of toxins. As you may know, Marty Pall advocates its use as a scavenger of nitric oxide. It will also bind sufite and cyanide. In the GD--MCB hypothesis, its high reactivity works against it, because when unprotected by glutathione, it becomes vulnerable to reactions with toxins, and is "hijacked."

Several people are advocating use of very large dosages of various forms of B12, including freddd on this thread, Dr. Kenny de Meirleir, Dr. Amy Yasko, and others. Probably a lot of this B12 binds and takes out toxins.

Best regards,

Rich

Best regards,

Rich
 
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michaeldfaulkner

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Long Standing Issue?

Fred: Wish you didn't have to be so thorough and interested!! I know all the possible really bad stuff this could be, and want to avoid thinking about it.

Upon reflection, I may of had a B12 issue for a long time. I've had some of the more vague symptoms for many years and my MCV was close to top "normal" also for many years. I wondered why recently my lower calves had lost all of their hair (just read about that). If I indeed have had a long standing B12 deficiency, none of my regular or "alternative" doctors I saw for not "feeling well" got it. I'm sure true of many people. The hematologist I saw a year ago said my red blood cell level of B12 could not cause these symptoms. I could of been trying this a year ago, and I think he was incorrect (well, if I knew where to find this info).

I do take inspiration from your at least 30 years of dealing with this (did I get the years right).

Shopping today for the Jarrow B12, I was reminded that I had taken another brand of sublingual some years ago. Don't remember any reaction. I'm about to take my first dose of the Jarrow now, so we'll see.



Hi Michael,

This appears to summarize possible causes.

http://www.justanswer.com/questions/1nl08-high-mcv-and-mch-but-12-and-folic-acid-normal
There are many causes of high MCV but most common are Vit b12 and folic acid deficiency or alcohol use. There are many other conditions that cause high MCV, or macrocytosis, including: liver disease or obstructive; jaundice; cancer chemotherapy or immunosuppressive therapy; bone marrow suppression, infiltration or aplasia; myelodysplasia; hypothyroidism; absence of spleen; erythropoietin therapy; Down syndrome; selenium deficiency; rare inborn errors of metabolism of folate or B12.


Read more: http://www.justanswer.com/questions/1nl08-high-mcv-and-mch-but-12-and-folic-acid-normal#ixzz0gUe95TGP
 
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michaeldfaulkner

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First Dose of Jarrow B12: It dissolved in twenty minutes, even moving it around in the mouth. What's the secret to keep it available longer? .......... It is now 35 minutes post dosage. Feel a bit spacey, but energetic and mentally very good. Neuropathic symptoms seem a bit more "excited". We'll see how it goes, adding the other supplements over the next few weeks. I think I passed the first test. (-:
 

dmholmes

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First Dose of Jarrow B12: It dissolved in twenty minutes, even moving it around in the mouth. What's the secret to keep it available longer? .......... It is now 35 minutes post dosage. Feel a bit spacey, but energetic and mentally very good. Neuropathic symptoms seem a bit more "excited". We'll see how it goes, adding the other supplements over the next few weeks. I think I passed the first test. (-:
I do 4 at a time, 2 in each side, 1 upper, 1 lower part of mouth. I think when I first started they didn't last as long either, but now I can go over an hour easily. 2 hours if I don't move them around or play with them.
 
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michaeldfaulkner

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Holmes: What da ya mean 2 hours? Do you have a pocket in the cheek to store those babies? I assume the saliva will dissolve them quickly if in contact, and that is what happened to me. In the spirit of slowly introducing the supplements, may have to wait a bit before I try four at a time. Thanks for the feedback.
 

JPV

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Yeah, I found that the Country Life Dibencozide melts in about 5-10 minutes... just sitting there, not being moved around at all. The Jarrow Methyl B12 melts in about 30-40 minutes. I don't see how these are supposed to last 45 minutes. I just figured that maybe I have a high level of acid in my saliva, which in itself might be an interesting observation.
 

dmholmes

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Holmes: What da ya mean 2 hours? Do you have a pocket in the cheek to store those babies? I assume the saliva will dissolve them quickly if in contact, and that is what happened to me. In the spirit of slowly introducing the supplements, may have to wait a bit before I try four at a time. Thanks for the feedback.
No pockets :) I think the saliva and sucking on them a little bit will definitely dissolve them quicker. I put the Country Life adb12 (2) under my upper lip, last longer there than anywhere else. Should be the same for the mb12, but harder to do with the size.

Peace,
David
 
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michaeldfaulkner

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Differing Experiences/Dosage Plan

More successful keeing the losenge lingering in my mouth this morning, placing it on the sides in the cheek area.

I can assume that experience and reaction will vary from day-to-day? Today, not so dramatic as my first dose yesterday. Yesterday, my head shifted into a really good zone. No worrying. Very energetic physically.

As far as a schedule, Fred had some good posts earlier in the thread about a five week trial and what to include. Assume slow and steady safest.

My hematologist wants to do another bone marrow in about a month (so far, from what I know, just because the B12 serum was over 1,000 - compared to last year - not sure if anything else in the test results). I'm thinking stall him for three months while being on the B12, etc. and redo blood test for B12 in serum and red blood cell as well as MCV. Fred mentioned three months is the cycle for blood cell replacement. Comments appreciated. Thanks all.

No pockets :) I think the saliva and sucking on them a little bit will definitely dissolve them quicker. I put the Country Life adb12 (2) under my upper lip, last longer there than anywhere else. Should be the same for the mb12, but harder to do with the size.

Peace,
David