B-12 - The Hidden Story

Freddd

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Welcome back Freddd! Your presence was missed. I found this forum last May when I felt I was having a nervous breakdown and didn’t know why. I was at breaking point. I constantly felt agitated and was unable to relax. I had troubling with waking during the night. I lived with constant brain fog. I had a hard time remembering things. I suffered with severe bouts of anxiety and depression. I struggled with ugly suicidal thoughts. The active B12 protocol is single most effective thing that I've tried – it literally saved my life. The last 8 months haven’t been easy but I feel that I’m on the path to healing. You have touched a lot of people through the nightmare you passed through. I’m grateful for the time you take to reach out to desperate people that are being crushed by B12 deficiencies

joseph
Hi Joseph,

I'm very glad this information has helped. I put it together but mostly employed data mining to find out what worked for people with my symptoms, avoiding "belief systems", hypotheses and theories and going for actual results. Fortunately many other people are getting similar results. Finding out how terribly important BRAND and/or variety of mb12 is and avoiding light during mixing and use of injectable products makes it a challenge to get repeatable and predictable results. I also read research with a jaundiced eye for false or unjustifiable assumptions, weasel words and outright dumb mistakes. I found that it took about 9 months for many of the things to change, especially neurologically and that each time I added certain additional cofactors I would start a new 9 month period of turbulence ending in more neurological healing. I don't know exactly what you have been doing or your timing or how long your system takes to heal various things. I have had some degree of improvement neurologically continuing on and off for almost 8 years. So good luck and keep on going. They one thing that set me back 2 years neurologically was 6 weeks of glutathione (precursors) including MAXGL.
 

ukxmrv

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Fredd,

Sorry to be a pest (I've read most of this thread now).
For those of us abroad is there any other good Adensolycobalamin to buy? I can get the Metabolics brand easily?
 

Freddd

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Fredd,

Sorry to be a pest (I've read most of this thread now).
For those of us abroad is there any other good Adensolycobalamin to buy? I can get the Metabolics brand easily?
Hi Ukxmrv,

I am not familiar with that brand unless it is the 10mg capsules I've seen sometimes. These have not been comparatively tested. Further as an oral capsule that is swallowed absorption is about 1%, 100mcg from a 10,000mcg capsule. A single 3mg Country Life absorbs very well in the 25% range at 90 minutes under the lip yielding 750mcg into the blood. You woulod need to take 8 of those 10mg capsules to equal a single 3mg sublingual. If you are in the UK, then you can order from iherb quite inexpensively as long as you follow the total weight and value instructions on the website. The cost from iherb.com of the Country Life adenosylb12 is about 11-12 cents per sublingual tablet plus shipping etc. They have all the brands that are tested by me as being 5 star and very predictable in response.
 
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Hi Freddd,

Thank you very much for your previous reply. In reply to your question, I hope this isn't too much information.

My wife is lucky enough to rate a capital "A" for her Ataxia - specifically Cerebellar Ataxia which means damage to the cerebellum. A lower case "a" ataxia is a symptom of ill coordination, balance etc. you might get in another neurological disease such as MS which could be damage to the spine, cerebellum etc.

She had hints over a number of years of imbalance etc. but when she fell her internist finally ordered an MRI in 2004. The MRI revealed her cerebellum had shrunk more than one would expect due to age. Her first neurologist could not find a cause but he referred her to an Ataxia expert who discovered she had IgG antibodies to gluten (not an allergy). she also had a normal blood test for B12 (which says nothing about the brain). She went on a gluten free diet and we eventually proved her motor skills significantly improved as the antibody levels dropped - warranting a diagnosis of Gluten Ataxia. This is similar to Celiac Disease only the cerebellum is attacked instead of the gut. On average she continued to improved till mid 2007. After that she began to slowly decline again. A blood test showed she was also producing IgG antibodies to a milk protein so she went on a gluten free / dairy free diet. She kept slowly declining till March of 2010 but the milk antibodies had not declined enough to be sure if they were causing the decline or not. She then had a bad reaction to the Parkinson's drug Sinemet and had a series of whipsaw declines and partial improvements in motor skills up to the present. Much of the motor skill decline is may be due to Parkinsonian tremors (this does not mean she has Parkinson's disease).

She had peripheral neuropathy (burning and swelling feet) starting late October 2007 In January 2008 I began giving her a Natural Factors 1mg mB12 sublingual several times a week. I also had her rub L-arginine cream. In February 2008 she switched to Source Naturals 5mg mB12 sublingual several times a week. In July 2009 she began taking a Source Naturals 5mg combined mB12 & adB12 sublingual every day. Prior to July 2009 she was also getting a Nature Made B-complex 2 times a week. The L-arginine cream did reduce the swelling and some of the burning but the supplements didn't seem to have much impact on the burning in her feet. She did not appear to have any significant startup reactions to the mB12, aB12. We started your protocol in September 2010 with the intent of trying to provoke a reaction that might justify going on to subcutaneous injections. She got up to 5 mg mB12 2x/day (morning and evening), adB12 6 mg in the afternoon and 0.8 mg mFolate 3x/day by the end of September. She was also taking most of the recommended supplements including a Jarrow B-Right 2x/day. She then experienced a scary evening of moderate Serotonin Syndrome. After a night of taking vitals which were mildly elevated, it was decided to see her internist in the morning.

Immediately after the Serotonin Syndrome we stopped her SSRI (Celexa ) permanently and everything on your B12 protocol for a some days until her symptoms seemed to be gone. We started back with 5mg mB12 1x/day and added everything back in over the succeeding weeks. By December 2009 we had increased and changed the protocol to 50 mg mB12 1x/night, 51 mg adB12 and 5 mg mFolate 3x/day (this was probably too much mFolate).

At this point her sleep apnea had disappeared and her sense of smell seemed to have somewhat startlingly improved. We had a neurologist visit which covered many things including your B12 protocol. Since the protocol seemed to be effective we discussed moving on to injections. However I did not bring enough information with me to ask for the correct prescription for injections so I said I needed to check into it. Two other drugs were prescribed (an antiviral (acyclovir) and a dopamine agonist(Mirapex)) in that visit to see what effect they would have. We decided to reduce the B12 protocol to about 20% of the high (the number of sublinguals was getting painful) while trying the two other drug therapies for about a month each to see what effect they had. The Mirapex is particularly important because her Parkinsonian symptoms are the most bothersome right now.

Since then her sleep apnea occasionally appears at a very low level and her sense of smell seems to still be improved.

She was on a PPI for much of the last decade. She stopped a few months ago. She also has intestinal absorption problems even if she does not have biopsy proven Celiac Disease. She was low on iron, zinc, calcium etc. In the last 1-2 years those have all been improved with careful diet, supplements and verification with blood tests. Her uric acid has also been falling over the years to well below normal. In MS and other patients serum uric acid is correlated with a leaky blood brain barrier, a poor prognosis and increased levels of the free radical peroxynitrite. I first started giving her zinc every few days because it is a vitamin D cofactor. At her next blood test her uric acid level had jumped to a 4 year high. Since then she is getting 60 mg zinc 1x/day and temporarily 1000mg inosine 1x/day. In less than 5 months her uric acid levels have doubled from slightly below normal to the middle of the normal range. Some MS patients go into remission when their uric acid (and zinc?) levels reach high normal.

In June 2010 she had the following blood tests (among others):

FOLATE,RBC 439 ng/mL >280
FOLATE,SERUM >24.0 ng/mL >5.4
HCT FOR FOLATE 38.1 % 34.0-42.1
HOMOCYSTEINE,TOTAL 8 mcmol/L 5-15
METHYLMALONIC ACID 147 nmol/L 87-318
VITAMIN B12 @ 1754 pg/mL 160-840
I understand these give no indication of the levels in her CSF. She has not had the new B12 test yet either but it would not give information about the level in the CSF either.


Thanks in advance for commenting on this!

CFSbear


Hi CFSbear,

I think that I will use this one of your posts as a basis of response. For starters, tell me more about the severe ataxia. Did it start suddenly? For how long did it get worse and for how long has it been the same?

The only other issue I'll address before having that answer is in regards to the ratio of the adb12, mb12 and methylfolate. The suggested ratios of mb12 to adb12 that I have come across is in the neighborhood of 3x - 10x as much mb12 as adb12. When another person tried precise injections of adb12 and mb12, when he tried the large doses of adb12 mood and personality changes similar to those of mb12-CSF deficiency occurred. In my injection series of adb12 I approached from a titration point of view. The peak effect of adb12 was reached with 1mg of adb12 injected at the same time as 10mg of mb12. I achieve exactly the same effect with 6-9mg of sublingual adb12 taken at time of injection with mb12 10mg SC. I find that I only need 18mg of adb12 about once a week, whether in divided or single dose as long as taken at same time as the mb12 injection to provide the CSF penetrating diffusion gradient. Several people have needed somewhat larger daily doses of adb12, but not larger than the mb12 to maintain an equilibrium state with the adb12. My daughter does best on a single adb12 daily plus the mb12. For my body-adb12 equilibrium, I find about 3mg sublingual once a week maintains my body at an equilibrium with the adb12. However If I don't have the somewhat larger doses times with the injections I can't maintain the equilibrium with the CSF-adb12. 50mgs of sublingual adb12 seems rather excessive and there is no evidence that it does any good at all for ataxia in anything more than a much smaller dose. Also, the timing of the mb12 may be a problem. Morning is usually best for most people because of a delayed generation of melatonin in the evening from mb12 in the morning. An evening dose of mb12 could be causing a melatonin generation at other times of day causing daytime sleepiness.

Also, a few remarks on the 4 equilibriums -

Through a specific titration pattern of mb12, a person who has widespread startup responses can observe their continuation for 1-3 months or so and then a rapid falloff as an equilibrium is reached. Then, after an increase of another 5mg sublingual does nothing and the startup responses have essentially ended, one takes a 3mg sublingual adb12, a new round of milder startup responses occurs affecting energy, muscle pain, muscle deterioration and atrophy, exercise endurance, FMS tender points, non-neurological spasms. The startup symptoms of adb12 typically falloff quickly, usually less than a week when 1 pr 2 sublingual adb12 are taken. This equilibrium is reached quickly because of the specific uses that adb12 is put to and it apparently tends to stay parked in the mitochondria once there unlike the mb12 which is mostly circulating and subject to kidney excretion or collection and excretion by the liver. After this equilibrium is reached it takes about 3 days without mb12 for there to be startup effects from a single 5 star sublingual. No amount of cyanocbl or hydroxycbl appear to reach an equilibrium level of b12 where it is needed in the body as compared to 5 star mb12 or adb12 sublinguals, and many mb12/adb12 deficiency symptoms will cpontinue to worsen no matter how much hycbl or cycbl is taken or what it is taken with. Sufficiency is NEVER reached with them in anybody willing to report the details and do the trial.




I will be watching for your responses.
 

Freddd

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Hi Freddd,

Thank you very much for your previous reply. In reply to your question, I hope this isn't too much information.

My wife is lucky enough to rate a capital "A" for her Ataxia - specifically Cerebellar Ataxia which means damage to the cerebellum. A lower case "a" ataxia is a symptom of ill coordination, balance etc. you might get in another neurological disease such as MS which could be damage to the spine, cerebellum etc.

She had hints over a number of years of imbalance etc. but when she fell her internist finally ordered an MRI in 2004. The MRI revealed her cerebellum had shrunk more than one would expect due to age. Her first neurologist could not find a cause but he referred her to an Ataxia expert who discovered she had IgG antibodies to gluten (not an allergy). she also had a normal blood test for B12 (which says nothing about the brain). She went on a gluten free diet and we eventually proved her motor skills significantly improved as the antibody levels dropped - warranting a diagnosis of Gluten Ataxia. This is similar to Celiac Disease only the cerebellum is attacked instead of the gut. On average she continued to improved till mid 2007. After that she began to slowly decline again. A blood test showed she was also producing IgG antibodies to a milk protein so she went on a gluten free / dairy free diet. She kept slowly declining till March of 2010 but the milk antibodies had not declined enough to be sure if they were causing the decline or not. She then had a bad reaction to the Parkinson's drug Sinemet and had a series of whipsaw declines and partial improvements in motor skills up to the present. Much of the motor skill decline is may be due to Parkinsonian tremors (this does not mean she has Parkinson's disease).

She had peripheral neuropathy (burning and swelling feet) starting late October 2007 In January 2008 I began giving her a Natural Factors 1mg mB12 sublingual several times a week. I also had her rub L-arginine cream. In February 2008 she switched to Source Naturals 5mg mB12 sublingual several times a week. In July 2009 she began taking a Source Naturals 5mg combined mB12 & adB12 sublingual every day. Prior to July 2009 she was also getting a Nature Made B-complex 2 times a week. The L-arginine cream did reduce the swelling and some of the burning but the supplements didn't seem to have much impact on the burning in her feet. She did not appear to have any significant startup reactions to the mB12, aB12. We started your protocol in September 2010 with the intent of trying to provoke a reaction that might justify going on to subcutaneous injections. She got up to 5 mg mB12 2x/day (morning and evening), adB12 6 mg in the afternoon and 0.8 mg mFolate 3x/day by the end of September. She was also taking most of the recommended supplements including a Jarrow B-Right 2x/day. She then experienced a scary evening of moderate Serotonin Syndrome. After a night of taking vitals which were mildly elevated, it was decided to see her internist in the morning.

Immediately after the Serotonin Syndrome we stopped her SSRI (Celexa ) permanently and everything on your B12 protocol for a some days until her symptoms seemed to be gone. We started back with 5mg mB12 1x/day and added everything back in over the succeeding weeks. By December 2009 we had increased and changed the protocol to 50 mg mB12 1x/night, 51 mg adB12 and 5 mg mFolate 3x/day (this was probably too much mFolate).

At this point her sleep apnea had disappeared and her sense of smell seemed to have somewhat startlingly improved. We had a neurologist visit which covered many things including your B12 protocol. Since the protocol seemed to be effective we discussed moving on to injections. However I did not bring enough information with me to ask for the correct prescription for injections so I said I needed to check into it. Two other drugs were prescribed (an antiviral (acyclovir) and a dopamine agonist(Mirapex)) in that visit to see what effect they would have. We decided to reduce the B12 protocol to about 20% of the high (the number of sublinguals was getting painful) while trying the two other drug therapies for about a month each to see what effect they had. The Mirapex is particularly important because her Parkinsonian symptoms are the most bothersome right now.

Since then her sleep apnea occasionally appears at a very low level and her sense of smell seems to still be improved.

She was on a PPI for much of the last decade. She stopped a few months ago. She also has intestinal absorption problems even if she does not have biopsy proven Celiac Disease. She was low on iron, zinc, calcium etc. In the last 1-2 years those have all been improved with careful diet, supplements and verification with blood tests. Her uric acid has also been falling over the years to well below normal. In MS and other patients serum uric acid is correlated with a leaky blood brain barrier, a poor prognosis and increased levels of the free radical peroxynitrite. I first started giving her zinc every few days because it is a vitamin D cofactor. At her next blood test her uric acid level had jumped to a 4 year high. Since then she is getting 60 mg zinc 1x/day and temporarily 1000mg inosine 1x/day. In less than 5 months her uric acid levels have doubled from slightly below normal to the middle of the normal range. Some MS patients go into remission when their uric acid (and zinc?) levels reach high normal.

In June 2010 she had the following blood tests (among others):

FOLATE,RBC 439 ng/mL >280
FOLATE,SERUM >24.0 ng/mL >5.4
HCT FOR FOLATE 38.1 % 34.0-42.1
HOMOCYSTEINE,TOTAL 8 mcmol/L 5-15
METHYLMALONIC ACID 147 nmol/L 87-318
VITAMIN B12 @ 1754 pg/mL 160-840
I understand these give no indication of the levels in her CSF. She has not had the new B12 test yet either but it would not give information about the level in the CSF either.


Thanks in advance for commenting on this!

CFSbear
Hi CFSbear,

One minor thing I would like to add about testing. The new bound b12 test is worthless in predicting effectiveness of active b12s via diffusion such as is used in the active b12 protocol. It tells you about the presence of approximately 1 or 2 micrograms of b12 in the body. It matters not in the least when compared to mgs of active b12 and it's effectiveness in serum.
 

Red04

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Slight crash

Freddd! Welcome back.

My wife has been on your protocol since October and she has been doing great.

She is off ALL medications. Sleeping well, no teeth grinding, emotions generally better, severe fatigue gone. She is pretty much back to her normal self. She still likes to sleep a lot, has some digestion issues (although reduced significantly) and is tired quite frequently.

She had pretty much peaked around the beginning of December. We added the last co-factor, alpha lipoic acid and saw no results.

My wife never really was positive it was the protocol that was the reason for the improvement she saw and she was having trouble with (bitching about) the shear number of supplements and she would skip taking them altogether. She was taking them less than half the time, but still felt about the same and pretty stable.

In order to lessen the number of supplements, I replaced A,D,E,C,calcium, mag,potassium, and zinc with a multivitamin. She took a full weeks worth of multivitamin, TMG, SAMe, L_carnitine fumarate, adb12, and mb12.

Along with changing to a multivitamin, she began exercising. I think she worked her way up to ~20 minutes of running/cardio in about a week.

She has had a pretty significant "crash". She is very restless in her sleep, severe fatigue, muscle pain, she is back to going to sleep at 6pm. This all happened in a very short time, since about saturday she has felt like this and it has gotten worse.

Last night, I re-configured her vitamins back to the individual supplements to see if that was the problem. Do you think the "crash" could be from the multivitamin or is it from the exercising?

Thanks in advance.
 

Freddd

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Freddd! Welcome back.

My wife has been on your protocol since October and she has been doing great.

She is off ALL medications. Sleeping well, no teeth grinding, emotions generally better, severe fatigue gone. She is pretty much back to her normal self. She still likes to sleep a lot, has some digestion issues (although reduced significantly) and is tired quite frequently.

She had pretty much peaked around the beginning of December. We added the last co-factor, alpha lipoic acid and saw no results.

My wife never really was positive it was the protocol that was the reason for the improvement she saw and she was having trouble with (bitching about) the shear number of supplements and she would skip taking them altogether. She was taking them less than half the time, but still felt about the same and pretty stable.

In order to lessen the number of supplements, I replaced A,D,E,C,calcium, mag,potassium, and zinc with a multivitamin. She took a full weeks worth of multivitamin, TMG, SAMe, L_carnitine fumarate, adb12, and mb12.

Along with changing to a multivitamin, she began exercising. I think she worked her way up to ~20 minutes of running/cardio in about a week.

She has had a pretty significant "crash". She is very restless in her sleep, severe fatigue, muscle pain, she is back to going to sleep at 6pm. This all happened in a very short time, since about saturday she has felt like this and it has gotten worse.

Last night, I re-configured her vitamins back to the individual supplements to see if that was the problem. Do you think the "crash" could be from the multivitamin or is it from the exercising?

Thanks in advance.
Hi Red,

A number of things could be going on. A multivitamin has far less of things especially minerals than the individuals because of bulk. So there is less calcium, magnesium, potassium and zinc most likely. There would also be much smaller doses of b-complex items, fewer of them and likely no active versions such as p-5-p or pantethine. I also don't see Metafolin listed and that is a critical cofactor for both kinds of b12. The way this crash sounds it could be one or more of several things; a running out of a cofactor which is unable to keep healing going, or a change in the minerals balance causing the problems or both. Also another angle is the exercising. IN my case, aftet 17 years of inability to exercise or even walk very far for a lot of it, I started the cardio exercise at 1 minute and worked up by a minute every other day as able to. I hit a wall at 17 minutes (Nordic track) until I started the l-carnitine fumarate but didn't crash, just could go past it. 24 hours after starting the carnitine I effortlessly went to 34 minutes and then had to start working up again. So maybe it has to do with exercise. One possibility is D-ribose which helps restore the ATP after exercise and turns out to be a critical cofactor for some.

It quite possibly could be a mix of any or all of the above items. Any multivitamin supplying more adequate amounts would require 6-8 horsepills per day. It's because of frequent crashes like these that I suggest starting with all the basics and then after things are going along well see if other changes make a difference rather than try to pick off each thing one at a time.m Also, make sure that she is using the 5 star brands of mb12/adb12 and retaining them as long as possible. Some people get in the habit over time of just slurping them down reducing the amount thereby reducing the amount absorbed by 95% or whatever.

The changes of Alpha Lipoic acid may not be blazing obvious because they may take weeks to months for a difference to be noticed.

Also I don't see omega3 oils mentioned and these appear necessary for various types of healing, especially neurological. Good luck.
 

Red04

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Thanks for the information. You do a great job and we have been able to relieve her symptoms almost completely. Something several doctors and thousands of dollars have failed to do.

She has never stopped the metafolin. She was not taking omega 3 with the multivitamin. She is back on the full protocol since Wednesday night. Let's see if she gets better.

Her exercise was not limited by CFS. It was just the aftermath. Maybe if she recovers again, it will help her buy into the supplements a little more and we can fine tune what she needs.

One more quick question. What is "A&D from fish oil"? I haven't seen this. It is listed as a basic cofactor and then D is listed again, separately. Am I missing something?
 
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Hi Joseph,

I'm very glad this information has helped. I put it together but mostly employed data mining to find out what worked for people with my symptoms, avoiding "belief systems", hypotheses and theories and going for actual results. Fortunately many other people are getting similar results. Finding out how terribly important BRAND and/or variety of mb12 is and avoiding light during mixing and use of injectable products makes it a challenge to get repeatable and predictable results. I also read research with a jaundiced eye for false or unjustifiable assumptions, weasel words and outright dumb mistakes. I found that it took about 9 months for many of the things to change, especially neurologically and that each time I added certain additional cofactors I would start a new 9 month period of turbulence ending in more neurological healing. I don't know exactly what you have been doing or your timing or how long your system takes to heal various things. I have had some degree of improvement neurologically continuing on and off for almost 8 years. So good luck and keep on going. They one thing that set me back 2 years neurologically was 6 weeks of glutathione (precursors) including MAXGL.
Hi Freddd,
Heres the specific b12 protocol that Im following
1. Jarrow Formulas Methyl-B12 15+g
2. Country Life Dibencozide (adenosylb12) 3mg
3. Solgar Metafolin - 800mcg x 2
4. Jarrow B-Right B-complex, 1 capsule twice a day
5. Potassium Gluconate (Now Foods) - 99mg x 2
6. Omega3 Fish Oil currently taking Country Life Omega Mood - 4 capsules
7. Jarrow TMG 500 500mg tablet x 2

I avoided b12 prior to 8 months ago because I read that under-methylators should not take it. They must have been referring to cyanocobalamin but at the time I knew next to nothing about b12. Now I know from painful experience that unspecified b12 equals cyano-b12. I was being psychologically and cognitively crippled while avoiding the only thing that could help. My doctors offered me drugs for my anxiety & depression but never once hinted at checking my b12 levels even though my clinical presentation screamed b-12 deficient. Im glad some desperate soul had the data mining skills and methodologies to pull this all together. Ive got ways to go but Im thankful that Im on the path to healing and not groping the in dark looking for it. Thanks for sharing the part on your neurological healing it gives me hope. Ive avoided glutathione because of your awful experience with it

joseph
 

Freddd

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Can someone please help me as I seem to have unknowingly raised my glutathione levels by taking dhea 10mg for 3 days. Whilst my brain fog and all of my mcs symptoms seems to have disappeared, I am once again getting horrible b12 deficiency symptoms. Only recently have I discovered that dhea raises glutathione. Ive now stopped taking the dhea and looking for a way to lower my dhea. Ive tried injecting myself for three weeks now with methylcobalamin 5mg/ml with very little success. Does anyone have any bright ideas? The other problem I seem to be having is sourcing some methylcobalamin in the UK; I have found a source, but it is extremely expensive:(((. Finally I take 4800mcg of folate along with my b12 shot; is that the right amount to take? Should I take the folate on an empty stomach and wait 30mins before I inject??? Any answers to any of these questions will really be helpful!!!
Hi Bluezone,

I honestly can't suggest injecting mb12 until you have experience with one of the 5 star sublinguals or you won't know bad mb12 when you get it. Most injectable mb12 is exposed to too much light and only a small amount of light can make it relatively worthless. You need a basis for comparison. Order the Enzymatic Therapy and/or Jarrow methylb12 and use the sublingual then we will know what we are dealing with. The deficiency could be because of ineffective mb12.
 

Freddd

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If you are trying a methylation protocol why would taking L-Glutamine be discouraged? It is recommended for Leaky Gut, and lists a number of benefits but is not recommended in this thread. I don't think I actually found an answer to that. A couple people mentioned problems taking it.

Also, can you give me some insight into it and glutamate and excitotoxicity? I found a good link about it but I think I need it dumbed down a bit at the moment. Thanks
Hi Kerilyn,

Here is the latest Rich and I worked out as a possiblity on the glutathione (precursors) and their effects on folate and active b12s.
http://forums.aboutmecfs.org/showth...Methylfolate-Deficiencies&p=152352#post152352
 

Freddd

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Hi Rich,
Several in our group have had the Metametrex urine test and being treated by and expert in methylation.....few have improved. One only needed methyl b12...no need for folinic acid but it has made No difference in 8 mths. She has no intrinsic factor. Would you have any suggestions. Would she be lacking the enzymes. Would the urine test reveal that info.

I am trying a nasal spray of b12/folinic acid as I have developed sensitivities once I get to 1/4 of folinic acid.

Susan
Hi Susan,

Perhaps your group could benefit from trying the "unneeded" methylb12, adb12 and metafolin as part of the active b12 protocol, it actually works for many folks. My experience is that it scares some people that it starts working so quickly and intensely. If the active b12 protocol doesn't make any difference in 8 months I would say that you need to try something different. There are no brownie points given for sticking to a protocol that doesn't work. Good luck.
 

Freddd

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I was wondering whether someone can please help me because I am in a real catch 22. Like Fredd I had a serious b12 deficiency issue and at one point had foot drop and some other rather nasty neurological issues. Whilst at first I recovered by about 90% with b12 shots (hydro), I slowly started becoming worse and worse. Every time I did a b12 blood test, it showed that I had over 2000. I decided to try out Fredd's protocol and it seems to have worked upto a point, only after I managed to track down some seriously expensive methylcobalamin 5mg/ml vials. A high intake of folate seems to also have helped. I would really appreciate if anyone could give me any idea of what exactly is going on here and if they could please answer the following questions:

1. Should I take folate on an empty stomach? I take 4800mg a day, should I take it at the same time as the b12 shot? and every time I take a shot?
2. Does anyone know where I can purchase methylcobalamin in the UK?
3. I know my glutathione experiment, whilst it cleared a lot of the brain fog it induced a b12 deficiency state; but why did chlorella, glycine and recently dhea also induce b12 def? Dhea was the worst of the three and I am in a really bad way at the moment with a lot of weakness in my legs. Having said that DHEA cleared all of my mcs symptoms (brain fog etc...) I believe I might have a transportation issue where the b12 can not get to my cells efficiently. Does this seem right?

I am in a constant battle between weakness in my legs and brain fog.

Any advice/help will be greatly appreciated.

Many thanks
Hi Bluezone,

I started with mb12 sublinguals on top of the basics. Each tweak increased the equilibrium level of healing reached. I would suggest the reliable mb12 sublinguals of 5 star rating as more effective than at least 90% of the injectable mb12 out there for a number of reasons which have been repeated over and over, and we can discuss them again. I take 3 Metafolin at each injection of 10mg mb12 3 times a day to keep my feet at a 95% functional level with some numbness but full control and balance and position awareness. Brain fog can vome for a lot of reasons including lack of adb12 and lack of l-carnitine fumarate etc. I take DHEA daily and have no problem at all with it. I haven't yet fully recovered from the glutathione I discontinued over 2 years ago. My daily use of Metafolin is currently 11 times what was entirely adequate before glutathione, 8800mcg/day.
 

Freddd

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Hi, I've been skimming through the posts, what my brain would allow. Could I ask a few questions:

Is it BEST (or critical?) for a person to take all Three forms of B-12- Methyl, Hydroxy, and dibencozide? Would only be taking one form be harmful in any way, or just not produce results?

Also I do not have the MTHFM Polymorphism.....I took active Folate's for several years, just recently ran out. But I never felt they were helping honestly, I just took it on a good faith basis. Since I don't have the MTHFM Polymorphism,will "regular" Folic Acid work just as well for me? Or I guess.....do I really need to supplement with Folic Acid at all?

I just restarted the Sublingual Perque B12 and already feel like I need to stop it for a while.....having an exacerbation of several symptoms.

I can not tolerate "B-Complexes" as they leave me wired, agitated, ill and unable to sleep. I've tried so many......I think they all just have too high levels of the vitamins for me to tolerate.

A few months ago I had my B-12 level measured and it was HIGH even though I had not been supplementing with any B-12; do you think the Folate I was taking could have caused my high B-12 serum level? I've read that Folic Acid can mask a B12 deficiency. I was taking 1/2 of Metagenics Folapro (400mcg).

P.S. You can get Perque B12 from PureFormulas.com or VitalBee.com;thanks for mentioning HolisticHeal.com I forgot about site as another source for Perque. I see that ProHealth has their own Hydroxy B12 also.

P.P.S. I should mention that I am a vegetarian so I would only imagine that my requirement for B-12 is higher due to this fact?

Sorry so long, I always only mean to write a few lines!

Thank You!
Hi Themoonisblue,

5 star methylb12 will make a substantial difference over hydoxycbl. Adenosyl make make a huge difference over hydroxycbl. Hydroxycbl will make no difference over mb12 and adb12 as that is what a minuscule amount of it is converted to for it to be active at all. The body does not use hydroxyb12 unchanged.

For a vegetarian, I would also suggest that l-carnitine fumarate may make a knock your socks off difference. That teamed with adb12, mb12 and Metafolin will get the mitochondria back to work for most people with CSF/FMS, restore exercise tolerance, allow muscle repair and building, decrease multiple forms of muscle pain and in general restore the muscles to normal function whereas hydroxycbl does no such thing. 2/3s of b12 deficiency symptoms will get worse and worse the longer a person takes hydroxycbl as it has no effects on them. When the energy starts coming back as the mitochondria are restored to functionality and the nerves start working better a person might feel rather stimulated. That passes. If you back away from it every time it starts, it appears to get worse and worse.
 

TheMoonIsBlue

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Hi Fredd, I almost didn't check this thread so I almost missed your reply, which I Thank you for :)

I did start with a "5 Star" Methyl B-12, I ordered the Jarrow Formulas brands 1,000 mcg
Also ordered Metafolin (Solgar, cheaper than Metagenics) 800mcg, cutting it in half so taking 400mcg
And since I bought the Perque Hydroxy B12, I figure why waste it, so I'm cutting it in half and taking 1,000 mcg of that as well

Putting both the Methyl B12 and Hydroxy B12 under my tongue and/or in between my cheek and I'm doing pretty well at not "gulping it down", it usually takes atleast 40 mintues to fully dissolve.

Next time I place an order I may get the Adb12, I've actually used that in the past I believe the Country Life brand.

P.S. Do you think 400mcg is an adequate amount of the Metafolin? I think I mentioned before, I don't have the MTHFM Polymorphism, and my Methylmalonic Acid
levels were within normal range, for whatever that is worth.

Thanks, Fredd!
 

Freddd

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Hi Fredd, I almost didn't check this thread so I almost missed your reply, which I Thank you for :)

I did start with a "5 Star" Methyl B-12, I ordered the Jarrow Formulas brands 1,000 mcg
Also ordered Metafolin (Solgar, cheaper than Metagenics) 800mcg, cutting it in half so taking 400mcg
And since I bought the Perque Hydroxy B12, I figure why waste it, so I'm cutting it in half and taking 1,000 mcg of that as well

Putting both the Methyl B12 and Hydroxy B12 under my tongue and/or in between my cheek and I'm doing pretty well at not "gulping it down", it usually takes atleast 40 mintues to fully dissolve.

Next time I place an order I may get the Adb12, I've actually used that in the past I believe the Country Life brand.

P.S. Do you think 400mcg is an adequate amount of the Metafolin? I think I mentioned before, I don't have the MTHFM Polymorphism, and my Methylmalonic Acid
levels were within normal range, for whatever that is worth.

Thanks, Fredd!
Hi The MoonIsBlue,

Do you think 400mcg is an adequate amount of the Metafolin? I think I mentioned before, I don't have the MTHFM Polymorphism, and my Methylmalonic Acid
levels were within normal range, for whatever that is worth.


I don't know. All I can suggest is that you increase the amount until those symptoms that respond are on the run and go away. If none respond, then the Metafolin is probably fine at 400mcg.

Check out the folate deficiency symptoms on the glutathione - deficiency or detox? thread for the clearest description of folate deficiency symptoms.
 

susan

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Hi Fredd,
Thank you for you your response. However I dont know what this sentence means by "uneeded" when I was referring to our group who did the Metametrix test and have not improved after 8mths....doing Methyl B12/folinic acid.

Quote "Perhaps your group could benefit from trying the "unneeded" methylb12, adb12 and metafolin as part of the active b12" .....do you mean give up on Methyl B12 and change to adb12 and Metafolin

This next woman only needs B12, has no Intrinsic factor...not working after 8mths.....Do you mean she should try adb12 ...does she need Metafolin if her tests said NOT deficient.

Thank you
Susan

h
 

undcvr

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Hi all, just want to share that the B12 therapy is definitely one of the cornerstones that has helped my recovery. It wasn't easy. I have tried B12 several times in the past but each time had to stop becos it was giving me problems, too many side effects. I would then forget about it and move onto something else until I come across it again or until someone mentions how it has helped them. I think this process of 'forgetting' about it is very important. I seem to go though it with almost all the supplements I take. It seems as if the body needs time to process the encounter with the new chemical and needs times to process the experience itself before it can take the B12 again. Its just that I notice the same thing with almost all the supplements that I have taken in the past that have at one point or another helped me eg, Artemisinin, Mussels, Reishi/Maitake, IP6, Arabinogalactan ... I am not trying to give supplements a spiritual component but rather I attribute it too the complex reactions that take place in us.

I would luv to get subcutaneous B12 and if someone can tell me where I can get it I would appreciate it.

Right now I am on

Deplin (methylfolate) 15mg
Leuvocorin (folinic acid aka formylfolate) 15mg
Methylcobalamin 5mg tabs from Source Naturals - as much as I need a day to get relief, can end up coming up to almost 10 tabs. *Note: This brand of B12 has been reviewed poorly on PR. But I think it more a statement of how much recovery I have made over all these years to be able to take a crappy supplement, or it may just be that if i switched to a better brand I wont need so many tabs a day.

Its been great though, together with the Valcyte, it is helping so much and I really feel better. All my cfs symptoms are slowly fading away. The Cycloferon is abit iffy but that is mainly my fault. Sadomachochism has never been my thing and I have yet to self-inject myself with anything even once ! No matter how much I try to convince myself that there is a greater benefit at stake.

I guess what I am trying to say is dont underestimate the detox process of B12. It can happen in as little as one dose, which if you think about is it really alot of B12. And it might put you off of it entirely. But then you might be missing the whole chance of benefiting from whatever recovery it might eventually bring you. I am sorry if cfs does not make more sense :)