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B-12 - The Hidden Story

winston

Senior Member
Messages
102
Location
Central California
Hi Summer, I have not heard from you for awhile and was wondering if you are having any improvements. I am still on the B12 protocol with some improvement but not as much as I would like. Five years ago I met two ladies in So. Lake Tahoe, we were all having chiropractic treatment for FMS/CFS. Recently I spoke to both of them and they told me about Oral System Balance a treatment performed by a dentist in Tacoma Washington. He uses different type of retainers to help with breathing. He treats all kinds of issues related to oxygen deprivation. Both ladies are doing great.

I have an appointment with him in 3 weeks, my husband is a dentist and he is not too open to this but is going with me. Will let you know what I find out.

Lena
 

Sunday

Senior Member
Messages
733
Lena, good to hear from you. I have not been well lately, partly due to moving, so I haven't been online much. But I have just had a very exciting discussion with a patient of Dr. Cheney's. I'm going to be posting more about this: it's very exciting and hopeful for us.

What you may want to know immediately is that apparently too much oxygen is toxic for us, and that causes many of our bad symptoms, such as breathing problems and PEM. Dr. C did an Echo (spelling?) heart test on this patient, using various substances. When he put an oxygen mask on her, she got very sick and her heart rate went all wacko. I'm not sure what this means in terms of your friends' success, or in terms of hyperbaric oxygen chambers - I'm still reeling with info. Since this is getting us off topic, I will PM you with a little more unlikely info which may prove helpful.
 
Could someone please point me in the right direction for information about the co-ofactors involved in theprotocol for rebalancing the mythelation cycle? I'm most interested in zinc and what type of zinc is most appropriate to use, what dose and for how long.

I've been taking high dose injections of hydroxocobalamine for about 3yrs. I also take lipoceutical glutathion but I haven't felt it makes me any better. I've also tried sublingual methyl cobalamine. I'm long term very ill so there are certainly other problems involved but it could be that I would be worse without b12 and glutathion. I tried to add Folapro but it drove my heart crazy so then I thought that perhaps I would try zinc.

Sorry if this has already been covered but I'd love to be redirected if so.
 
Messages
66
Could someone please point me in the right direction for information about the co-ofactors involved in theprotocol for rebalancing the mythelation cycle? I'm most interested in zinc and what type of zinc is most appropriate to use, what dose and for how long.

I've been taking high dose injections of hydroxocobalamine for about 3yrs. I also take lipoceutical glutathion but I haven't felt it makes me any better. I've also tried sublingual methyl cobalamine. I'm long term very ill so there are certainly other problems involved but it could be that I would be worse without b12 and glutathion. I tried to add Folapro but it drove my heart crazy so then I thought that perhaps I would try zinc.

Sorry if this has already been covered but I'd love to be redirected if so.

sphynx,

You can find the details here:

Active B12 basics thread

http://forums.wrongdiagnosis.com/showthread.php?p=191131&posted=1#post191131

Please don't post there, come back here and ask questions or here:


http://forums.wrongdiagnosis.com/showthread.php?t=9948&page=1087

Also, I've been following the protocol for almost one year now and I feel so good compared to where I was last year at this time. Freddd warns about using glutathione or it's precursors, it diminishes the effectiveness of the active B vitamins (not clear why). I have personal experience with this. I was suffering from severe digestive issues during the past year and I felt I needed to take glutamine (a precursor) in order to help heal my intestines (my malabsorbtion was so bad I was losing weight no matter how much I ate). I tried glutamine several times and each time I had a return of symptoms (ear ringing, tingling, others I can't seem to remember right now), but it was clear that the glutamine caused it. So, to have the best chance of success with this protocol I suggest following it as closely as you can.

Velha
 
Thanks Velha for your reply. It's really great to hear that you're feeling so much better! I just browsed quickly through that link so I'm gonna go back and check it again but it seems to be primarily focused on B12 deficiency. I'm not specifically interested in deficiency but rather a methylation block lifter. Gonna check it again. Thanks for sharing the link :)
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
Hi Fred,

Just wanted to let you know that I'm still doing well on this. Thanks again ... I would never have picked up on the fact that there were active B12s that I might be missing out on if you hadn't taken the time to post here as often as you did.

I've been going pretty non stop since I started this around July 21st. I even played in the waves, aka got knocked over repeatedly, at the beach several times without feeling weak. I started a few other things (pregnenolone, DHEA and testosterone and a home made probiotic drink ) at the same time as this, so I can't be sure this protocal is what's helping me so much but I wanted to post here anyways. Honestly though, I think based on my reaction to these supplements and harsh reaction to cyno B12 that it did make a big difference for me.

I've had a few days where I needed to rest but haven't had the PEM I was accustomed too. Even the people I'm hanging out with are resting ... I noticed too that I needed to add back in a few of my other supplements like niacinamide, pantethine, chromium, molydbenum, etc every few days ... I'm assuming it's because I used up those nutrients. And I'm using 100 mg, up from 50mg, of 5HTP at night to sleep but I'm sleeping great ...

I am noticing that my ability to speak is still impaired still if I seriously over due it ...

thanks again ... X

PS. Please let me know if you know of other nutrients that taking these would deplete.

PPS. Not to confuse anyone, but my homemade probiotic drink appears to have taken care of my nocturnal myoclonus and eliminated my need for Theanine. I suspect that other liquid probiotics that I used over the last 5 years account for why some nights I had myoclonus and some nights I didn't.
 
C

Cloud

Guest
The answer to this question is undoubtedly buried somewhere in this thread, but being brain-dead, I'm taking a shortcut and asking directly...can anyone tell me why Hydroxycobalamin 1mg Injection gives me lots of energy, while Methylcobalamin Sub Lingual 1mg makes me sick? It will take 3-4 days with the methylcobalamin to make me sick. I think it's significant, but I don't know what it means. Thanks everyone.
 
Messages
66
sphynx,

IT IS ABOUT lifting a methylation block ANDDDD about optimizing mitochondrial function. It is just 'presented' in a different light. While I did not have a methylation panel run, I know I had a methylation block. The first time I had some methylB12 and methylfolate I literally felt like someone had jump started my engine - it was scary and amazing.

Please take the suggestions on that site seriously - it is all about fixing methylation even if that is not how it is discussed!!!
Velha
 

kerrilyn

Senior Member
Messages
246
At the beginning of the summer I tried the basic B12 protocol (MethylB12, AdB12, B-Right and FolaPro) and some other things. I haven't read this whole thread, but did make it through a good portion of it, and parts of the one on WD, plus Rich's methylation info. Much to my surprise, it was starting to sink in (I think), but that was 3 months ago and now I've forgotten most of want I read then. I'll have to take a refresher course.

While taking the supplements I felt very drained and couldn't keep my eyes open within an hour or so of taking the pills. At that time I wasn't in the mindset to continue for long, but I did notice benefit from AdB12 alone. It really increases my energy so I've continued to take it.

I could be wrong but I've noticed delays in crashes and less PEM, plus a big decrease in pain (various types of pain). Is that even possible? I've not seen anything relating it to pain relief, only energy, so maybe it's just a coincidence. Or could that signify something in particular? ......with my mitochondria function for example? Is there a problem with taking AdB12 alone, or prior to the others? People have mainly discussed adding it in after they've gotten started with the others. Thx.
 

winston

Senior Member
Messages
102
Location
Central California
Hi Sunday, I sent you a PM hope it went through. I will leave for Tacoma, Washington next Sunday. I am still on the B12 protocol. Will let you know what I find out.

Lena
 
Messages
15
"By decreasing virus load, HAART may down-regulate an overactivated immune system in patients, and antioxidant status may improve. Thus, vitamin B-12 might also increase, even without supplementation.... However, these decreased vitamin B-12 concentrations are not necessarily due to insufficient dietary intake of B vitamins; they could also be a consequence of the oxidative stress associated with immune system activation."

http://www.ajcn.org/cgi/content/full/78/5/1046
 

richvank

Senior Member
Messages
2,732
At the beginning of the summer I tried the basic B12 protocol (MethylB12, AdB12, B-Right and FolaPro) and some other things. I haven't read this whole thread, but did make it through a good portion of it, and parts of the one on WD, plus Rich's methylation info. Much to my surprise, it was starting to sink in (I think), but that was 3 months ago and now I've forgotten most of want I read then. I'll have to take a refresher course.

While taking the supplements I felt very drained and couldn't keep my eyes open within an hour or so of taking the pills. At that time I wasn't in the mindset to continue for long, but I did notice benefit from AdB12 alone. It really increases my energy so I've continued to take it.

I could be wrong but I've noticed delays in crashes and less PEM, plus a big decrease in pain (various types of pain). Is that even possible? I've not seen anything relating it to pain relief, only energy, so maybe it's just a coincidence. Or could that signify something in particular? ......with my mitochondria function for example? Is there a problem with taking AdB12 alone, or prior to the others? People have mainly discussed adding it in after they've gotten started with the others. Thx.

Hi, kerrilyn.

I think that the explanation for what you have experienced is this:

Adenosyl B12 serves as a coenzyme for methylmalonyl mutase. This enzyme is in the pathway that feeds certain substances as fuels to succinate, in the Krebs cycle, which is located in the mitochondria. These substances include branched-chain amino acids, odd-chain fatty acids, proprionic acid, and some other things. In CFS, many people do not have a very well-functioning Krebs cycle, because the oxidative stress (due to glutathione depletion in my hypothesis) blocks enzymes earlier in the cycle than succinate. As a result, these PWCs are not able to use carbs and fats very well as fuel, because they have to enter the Krebs cycle as acetyl-CoA, upstream of the partial blocks. However, succinate is downstream of the blocks, so that fuel fed in at that point can be utilized by at least part of the Krebs cycle, to supply energy to make ATP in the mitochondria. So this can give a PWC quite an energy boost.

As you may know, some of the so-called "energy drinks" that are being sold these days are very high in B12. Most of them use cyanocobalamin (except for Amy Yasko's Black Bear B12 Energy Spray, which uses hydroxocobalamin). But all of these provide their energy boost by causing an increase in adenosyl B12. Many nominally "healthy" people are a little low in B12 because of their diets, and these drinks capitalize on that by boosting B12, which really does give them energy, not just an artificial caffeine high, though many of the energy drinks use that, too.

With regard to the decrease in pain, I suggest that the adenosyl B12 is helping to supply additional energy to your neurons, also. This will help them to make ATP faster, which in turn powers their membrane ion pumps, restoring the levels of ions such as sodium, potassium, calcium and magnesium in these cells. That in turn will raise their threshold for firing nerve impulses, and that translates into less sensation of pain.

I don't see a problem with taking adenosyl B12 alone. Some of it will likely be converted to methyl B12, and that should help your methylation cycle, but it could be that if you take only adenosyl B12 and no folate, you may not be able to lift the methyation cycle block. I suspect that the reason you felt drained, etc., when you took the complete protocol was that you were lifting the methylation cycle block more, and this was stimulating the operation of your detox system, mobilizing toxins. I suspect that the mobilized toxins were responsible for the symptoms. I think that ultimately you will have to mobilize the toxins to get them out of your body, and there will be symptoms resulting from the detox process during that time. But it's nice to experience some of the happier effects of B12 supplemention, isn't it?

Rich
 
Messages
4
my B12 level was 208 for a year that i know of before I developed seasonal allergies and then my skin felt like it was sunburned especially my arms and legs. I started shots of cyano, than hydroxy with some relief. my legs feels better but my upper body and arms the skin feels hypersensitive to touch and clothing. When I awake in the morning I am fine but the symptoms start to return a couple of hours later. I feel better when i exercise. My last b12 test was 858 and i started shots of methycobalaminn After 2 shots i have now deceloped where my hands and feet feel hot and my palms turn red and they feel swollen this has been going on now for 2 months. i stopped the shots and am only taken the jarrow b12 and country life b12 and folic axid but am not feeling better. I have also lost weight the past since my original symptoms started

all thought appreciated

gary
 
Messages
33
Burning/hypersentive skin is a horrible symptom. People talk about it on lymenet.org (search the archives). I of course don't know if Lyme is the cause for you, but at least people discuss it there. Far infrared saunas help the symptom for me somewhat; also stumbling on effective antibiotics has helped, but only intermittently. Cholestyramine helps a bit, so it may be a neurotoxin symptom in part. Sorry I don't have more to offer, but it may not be B12-related, or not primarily a B12 problem. Anyway, the B12 test results are meaningless, according to Fredd, I think.
 

MDL

Messages
80
In the poster I presented on my theory of hydrogen sulfide (H2S) and CFS at the 20009 IACFSME Conference in Reno, I noted that:

"Hydroxocobalamin (Vitamin B-12a) has been shown to prevent H2S-induced lethality and cytotoxicity in mice."
It may be having the same action in your body. H2S is produced by mold, yeast, many foods, and by lots of bad bacteria, including lyme, salmonella, mycoplasmas, etc., so you can see why counteracting it in certain cases might be helpful.
 
C

Cloud

Guest
In the poster I presented on my theory of hydrogen sulfide (H2S) and CFS at the 20009 IACFSME Conference in Reno, I noted that:

"Hydroxocobalamin (Vitamin B-12a) has been shown to prevent H2S-induced lethality and cytotoxicity in mice."
It may be having the same action in your body. H2S is produced by mold, yeast, many foods, and by lots of bad bacteria, including lyme, salmonella, mycoplasmas, etc., so you can see why counteracting it in certain cases might be helpful.

I thought the H2S was only produced by certain bacteria.....so, would Viruses be included in this list too?
 

MDL

Messages
80
I thought the H2S was only produced by certain bacteria.....so, would Viruses be included in this list too?

I am not aware of any virus known to produce H2S, but that is not to say that viruses cannot play a role, because, obviously, they do!
 
Messages
25
THINGS TO AVOID

Glutathione and glutathione precursors such as NAC and glutamine, undenatured whey. The glutathione induces immediate active b12 deficiencies, apparently by converting active methylb12 to inactive glutathionylb12 and rapidly excreting it.

Does anyone know if it's okay to take regular (denatured) whey protein? The kind I've got lists "L-Glutamic Acid" as an ingredient...
 
Messages
66
Does anyone know if it's okay to take regular (denatured) whey protein? The kind I've got lists "L-Glutamic Acid" as an ingredient...

If you are following Fred's protocol it isn't advised. I had serious dietary issues and malabsorption and tried rice protein and l-glutamine individually and on several occasions at various doses. Each time I found the same thing that Fred has said he and others in his glutathione precursors trial experienced - a return of neurological symptoms and a deficit in methylfolate seen as an inability to absorb mB12 (as seen by discoloration of my urine). Each time the symptoms slowly went away after stopping the protein powder or glutamine.

I noted that at lower doses the symptoms took longer to appear, up to two weeks or so. Thus, it isn't recommended and if you do decide to try it you should watch yourself closely for any effects that might take a while to show up.

The way I solved my need for more protein (I ate plenty of protein but was apparently not digesting and absorbing it as I should) was by getting a plasma amino acid test to show what amino acids I was lacking (all of them) and prescription amino acids (without glutamine or cysteine). These helped me tremendously in my recovery while following this protocol. I continue to take them and follow the protocol and continue to improve. I anticipate that I will not need the amino acids long term...
Velha
 
Messages
66
I have a similar story to share. An acquaintance of mine was also B12 deficient, she suffered fatigue and hypersensitive skin, this is a neurological side effect of B12 deficiency. Her hypersensitive skin dissapeared with the addition of mB12 but her fatigue did not. It was not until the addition of all the co-factors that the fatigue improved. This is a common occurance and is the reason that Fred recommends all of the essentials (A,D, E, C, multivitamin, multimineral, etc.) and the co-factors (alpha lipoic acid, Sam-e, d-ribose, coQ10, carnitine, ect.) are in place before someone decides if this protocol is helping them or not.

If you haven't already, please read the following posts that give directions for how to proceed through the protocol:

http://forums.wrongdiagnosis.com/showthread.php?p=191131&posted=1#post191131

I too found that co-factors were needed for my fatigue to go away and found that carnitine in particular helped me.

Regarding your weight loss, have you checked all the typical possibilities? overactive thyroid, diabetes, others? If those are all fine, consider your diet and your digestion as a source...
Take care,
Velha