B-12 - The Hidden Story

Freddd

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hi Freddd, interesting thread - looks like there might be something to this B12 theory. I'm still going through and reading. I have the methylation panel test ready to go, but just haven't gotten the blood draw yet.

In the meantime, I had standard lab work last week, and while my folate levels apparently have mysteriously risen into the normal zone at 7.6 (5.4 ref.), I'm now B-12 deficient at 118 (223 ref). I don't know why those two things would just reverse like that, kind of weird, although the folate deficiency was a year or so ago. Somehow without supplementing it's become normalized, while the b12 has crashed - maybe some change in diet has done something.

Regarding the B12, what should I do? They want me to take injections, hydroxycobal 1,000mcg. once a month - don't know whether to laugh or cry - but I had bad reactions to b12 injections when i tried them a number of years ago so I won't be doing that regardless.

I have some sublingual methyl b12 here, I think they're 5,000mcg. Occasionally I take about a quarter or 1/8th of one, but it makes me kind of wired, and then my sleep is disrupted even more than normal at night. Should I try the adenosyl, or keep taking the methyl at maybe even smaller doses and hope it levels off after a while?
Hi Mr. Kite,

I guess this is the show tonight. I know of a situation that can cause exactly that. B12 and folate work together in some functions. When active b12 becomes too low in the cells, the cells can suddenly dump their folate into serum, raising the serum level while provoking deficiency symptoms. This is called the "methyl-trap". As RichVank said this can be caused by the methylation block in which then triggers the methyl-trap. It would have the characteristics you have described. Since the serum doesn't use folate, it goes high at the same time as deficient where it is used, in the cells. You can not treat by these test results and expect to have good results.

I have some sublingual methyl b12 here, I think they're 5,000mcg. Occasionally I take about a quarter or 1/8th of one, but it makes me kind of wired,

And here you have the number one most common marker of effectiveness of mb12.

Should I try the adenosyl,

By all means, take it each day a day or two ahead of restarting the mb12. Take the mb12 in the morning as it tends to generate melatonin in the evening normalizing sleep. Right now you have been down so long it feels like up. Your sleep will normalize becoming restorative and restfull and slightly shorter generally, though it may take a little while. As you increase, you can take 1/8 several times a day before increasing to 1/4, building up to several a day before taking half, etc. Keep going because the effects won't stop until more mb12 stops making a difference. At 1/4 table it will continue for months. At two tablets it might last a couple of weeks. At up to 1/2 tablet or so it may never let up as it is very slow to reach equilibrium. One thing you can do is take 2 tablets one day in a single dose and it likely not be too much more intense than 1/2 a tablet. Then drop back to 1/2 a tablet and start building up again. That can take the edge off on a daily basis. The total of length of reaction times intensity of reaction is approximately a constant. The higher the dose the faster you get through it. Energy doesn't come back without coming back. And that change is what you feel. After your body reaches saturation with mb12 the change will no longer be noticable as your "set-point" comes down to normal. Also don't forget all the basics plus Metafolin plus adbv12. Then the "critical cofactors" can come afterward when you know what is still there.
 

Freddd

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Hi Freddd, thanks for the explanation of the methyl trap and the detailed comments on dosing. I am definitely having a lot of increased anxiety and trouble sleeping last night from the 1/4 b12, so it looks like I'm going to have to proceed really slowly. I have a couple of other questions if you don't mind.

Reading through the thread, I came across the info on l-glutamine. I was actually taking l-glutamine at the time of the lab test, about 4-6 grams daily, and I had been taking it at that point for about 6-8 weeks. Could that have caused the serum B-12 deficiency, then leading to the scenario you describe with the folate? And if that is the cause, how long do you think it would be likely to take for the B12 to normalize again, whereupon I assume the folate levels might then show up as decreased?

On the adenosyl b12, I am completely intolerant to taking folate, so the Country Life is out. Are there any other recommended brands that don't have folate? Have you ever tried this brand, or heard any reports about it?

http://www.iherb.com/Anabol-Naturals-Dibencoplex-10-000-30-Capsules/9849?at=0

As I mentioned, I'm getting the methylation panel as soon as I can get to the blood draw. Should I wait to start any of the b12 protocol until after getting the panel? Can b12 affect the results of the panel and give skewed results, like apparently it can with the serum vitamin levels? If so, how long is a good washout period with no b12 or methylation protocol supplements? I guess this ties into the first question, too, because at $350 a shot, I don't want the results to be screwed up because I should have waited another week after going off the glutamine.

thanks
Hi Mr Kite,

On the adenosyl b12, I am completely intolerant to taking folate, so the Country Life is out. Are there any other recommended brands that don't have folate? Have you ever tried this brand, or heard any reports about it?

I have had a lot of people ask about this brand but no reports from anybody with the deficiencies we are dealing with. It is targeted at the body builder group and this is where I first learned of adb12 and it restoring the ability to form muscle. I had substantial muscle atrophy during all this and was not able to increase muscle until I started the adb12.

The brand you mention is a 10mg oral supplement. That would mean that the usual absorption with malfunctioning digestive system would be about 100mcg or maybe 110mcg if everything is working right. At 50 cents or so per capsule as opposed to 10 cents per 3mg sublingual that would yield up to 750mcg absorbed, it would not have the same effectiveness or cost effectiveness. In this form, if you needed to get the adb12 into the CNS/CSF as I did, instead of 51mg nominal dose, giving 7.5-12.5mg absorbed which will penetrate the CSF/CNS, one would need to take a nominal dose of about 1000mg, about 100 capsules at once, to put it in perspective. If the glutamine was able to combine into glutathione and then if you have the methyl-trap going on, based my experience and others, it will take substantial metafolin doses to overcome the effects and allow the mb12/adb12 to be effective.

I am completely intolerant to taking folate,

What forms have you taken with what results that would have you say that?

As I mentioned, I'm getting the methylation panel as soon as I can get to the blood draw. Should I wait to start any of the b12 protocol until after getting the panel? Can b12 affect the results of the panel and give skewed results, like apparently it can with the serum vitamin levels? If so, how long is a good washout period with no b12 or methylation protocol supplements? I guess this ties into the first question, too, because at $350 a shot, I don't want the results to be screwed up because I should have waited another week after going off the glutamine.

Of course the results will be changed if you take mb12/adb12. That is the whole point, now isn't it? It can take a year or more after a dose to return fully to the previously terribly deficienct state even though a dose or two won't heal you. The magnitude of your response indicates extreme deficiency. What are "skewed" results. Who are you trying to prove anything to? Do you want to find your way through this maze or prove something to somebody who believes that these tests are worth as much as a plugged nickle?

Those doing "treat by tests" of this type have poor results. By and large a year or two later and nothing much will have changed. As methylation is only a small fraction of what mb12 does and has nothing at all to do with adb12, and mb12 will not function correctly for many of it's functions without the Metafolin, perhaps you need to change your hypothesis to one that can work for a substantial percentage of people instead of almost nobody. All of these tests are skewed in the first place, based on people chronically deficient of both active b12s, active folate and various other things as the norm.

If you move off of the "methylation" hypothesis and to a "correct deficiency symptoms" hypothesis everything will look different. When this and other tests show people they "shouldn't" take the things that can actually correct their problems, then there is something wrong with either the test and/or the interpretation.

If you have listed all your symptoms from the posted list of symptoms can you point me to them? If not can you do so which will allow a different discussion by seeing the categories your symptoms fall into, ie body-adb12, body-mb12, CNS/CSF-ab12, CNS/CSF-mb12 and Metafolin body-CNS/CSF.
 

Freddd

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SYMPTOMS, SIGNS AND CO-CORRELATES OF METHYLB12, ADENOSYLB12,
METHYFOLATE AND SELECTED COFACTOR DEFICIENCIES

LAST UPDATE -
Version 1.0, 07/13/09

mouth sensitive to hot and cold
sore burning tongue
beef-red tongue, possibly smoother than normal
sore mouth, no infection or apparant reason
teeth sensitive to hot and cold
canker sores
burning bladder (no UTI)
painful urgency (no UTI)
burning urethra (no UTI)
burning muscle pain
accumulating muscle pains following exertion
sore muscles
lack of muscle recovery after exercise
exercise does not build muscle
extremely sore neck muscles reversing normal curvature of neck
exercise deblitates for up to a week, making things much worse
painfully tight muscles, especially legs and/or arms
frequent muscle spasms anywhere in body
muscle pain especially around attachment points to bones
Eighteen severely tender muscle spots of FMS
Bursitis
dyspepsia - sick stomach, nausea, regurgitation, vomiting, bloating, not emptying
flatulence
altered bowel habits
abdominal pain
loss of appetite for meat, fish, eggs, dairy, the only b12 contining foods, nutrient specific anorexia
intermittent constipation
intermittant diarrhea
irritable bowel syndrome
Crohns disease (direction of causality if any not established)
Celiac disease (direction of causality if any not established) - gluten sensitivity
Dairy sensitivity
sores, ulcers and lesions along entire GI tract or any part
anorexia
Bullimia
reduced libido - loss of sexual desire
loss of orgasmic intensity
unsatisfying orgasms
inability to orgasm
loss and/or change of genital sensations - "gloved" loss of sensation
burning genital skin sensation
unable to become aroused
reduced testosterone
MEN
erectile disfunction
low sperm count
poor sperm motility
Poor sperm quality
Zero sperm count
WOMEN
post partum depression
post partum psychosis
False positive pap smears, noncancerous cellular changes
menstrual symptoms
Frequent miscarriage
child with neuro tube defects
PMS
paleness
rapid heart rate
heart arythymias
shortness of breath
heart palpitations
weak pulse
congestive heart failure
arteriosclerosis
Widespread pain throughout body
Hypothyroid (direction of causality if any not established)
High homocysteine
High urinary MMA

dizziness - even unable to walk
vertigo

irritable
depression
SAD - Seasonal Affective Disorder
mental slowing
personality changes
chronic malaise
poor concentration
moodiness
tiredness
mood swings
memory loss
listlessness
impaired connection to others
mentally fuzzy, foggy, brainfog
psychosis, including many of the most florid psychosis seen in literature, megoblastic madness
Alzheimer's
delirium
dementia
paranoia
delusions
hallucinations
strange "smells" that are not present like linen being ironed, burnt odors or tidal flats etc
strange "sounds" that are not present, rustlings, mummurings, detonations etc
deja vu experiences
anxiety or tension
nervousness
mania
impaired executive function
cognitive impairment
memory impairment
Hypersensitivity to touch
Hypersensitivity to odors
Hypersensitivity to tastes
Hypersensitivity to clothing texture
Hypersensitivity to chemicals
Hypersensitivity to body malfunctions, symtoms
Hypersensitivity to sounds and noises
Hypersensitivity to light and visual stimuli
Hypersensitivity to blood sugar changes
Hypersensitivity to internal metabolic changes
Hypersensitivity to temperature changes
Hypersensitivity to foods
mild to extremely severe fatigue
continuous extremely severe fatigue
easy fatiguability
severe abnormal fatigue up to and including apparent paralysis leading to death
spastic paralysis
weakness

sleep disorders
non restorative sleep
lack of dreaming
Night terrors
Prolonged hypnogogic state transitioning to sleep
Sleep paralysis
alteration of touch all over body, normal touch can be unpleasant and painful
alterations and loss of taste
alterations and loss of smell
loss of smell and taste of strawberries specifically
loss or alteration of smell and taste of potato chips specifically
roughening and increased raspiness of voice, mb12 can smooth it outin mid word
blurring of vision - can be sudden onset and sudden return
dimmed vision - usually not noticed going into it because change can be very slow or present for life
Visual impairment can be seen; ophthalmological exam may show bilateral visual loss
optic atrophy
optic neuritis
optic neuropathy
centrocecal scotomata
intolerance to bright light
diminished hearing - gradual onset or present for life, sudden return possible
unclear hearing, garbled
tinnitus - ringing in ears
always feeling cold
intolerance to loud sounds
intolerance to multiple sounds
inability to pick pick out one voice amongst many
Brainstem or cerebellar signs or even reversible (with mb12) coma may occur
neural tube defect not caused by folate deficiency or child with it
demyelinated areas on nerves
subacute combined degeneration
axonial degeneration of spinal cord
unsteadiness of gait
ataxic gait, particularly in dark
positive Romberg
positive Lhermittes
neuropathies, many types
progressive bilateral neuropathies
demyelination of nerves - white spots on nerves on MRIs
loss of detail and sensual aspects of touch all over body
paresthesias in both feet - burning, tingling,cobwebs, wet, hairs, pain, numbness, etc
paresthesias in both legs - burning, tingling, cobwebs, wet, hair, pain, numbness, etc
paresthesias in both hands - burning, tingling, cobwebs, wet, hairs, pain, numbness, etc
paresthesias in both arms - burning, tingling, cobwebs, wet, hairs, pain, numbness, etc
Loss of position sense is the most common abnormality (or vibration sense)
Loss of vibration sense is the most common abnormality (or position sense)
Loss of sense of joint position
hands feel gloved with loss of sensitivity
feet feel socked by loss of sensitivity
trembling
neuropathic bladder
unable to release bladder, mild to severe
urinary incontenance - occasionally to frequently
fecal incontinance - occasionally to frequently
sudden electric like shocks/pains shooting down arms, body, legs shooting down from neck movement
standing with eyes closed, a slight nudge or bump causes loss of balance
most patients have signs of both spinal cord and peripheral nerve involvement
The effect on reflexes is quite variable
Motor impairment may range from only mild clumsiness to a spastic paraplegia
clumsiness
slowed nerve impulses
decreased reflexes
difficulty swallowing
brisk reflexes
decreased deep tendon reflex
toes turn up instead of down in reflex to sole stimulation
Positive bilateral Babinski reflex
Foot Drop
impaired white blood cell response
poor resistance to infections
easy bruising
pronounced anemia
macrocytic anemia
megablastic anemia
pernicious anemia
decreased blood clotting
low hematocrit
MCV > 92-94 first warning, MCV > 97-100 alert
elevated MCH (Mean Corpuscular Hemoglobin)
elevated LDH
big fat red cells (when said this way usually with happy or healthy modifying it completely misinterpreting results of MCV
platelet dysfunction, low count
white cell changes, low count
hypersegmented neutrophils
migraine headache cycles
headaches
inflamed epithelial tissues - mucous membranes, skin, GI, vaginal, lungs, bladder
inflamed endothelial tissues - lining of veins and arteries, etc
high CRP without infection
mucous becomes thick, jellied and sticky
dermatitis herpetiformis, chronic intensely burning itching rash
frequent infected follicles
Seborrheic dermatitis
dandruff
eczema
dermatitis
skin on face, hands, feet, turns brown or yellow if anemia occurs
poor hair condition
thin nails
transverse ridges on nails, can happen as healing starts
splits/sores at corners of mouth
Hyperhidrosis - excessive sweating
Bariatric surgery
glutathione, glutathione producing supplements such as NAC/glutamine
Dilantin,
tegretol and some other medications
Relatives, grandparant, parent, sibling, child, grandchild ever needing b12 shots or supplement
coma
seizures
brain atrophy with ileal tuberculosis preventing b12 absorbtion

STARTING AS INFANT OR CHILD
delayed myelination
failure to thrive
autism
delayed speech
depression
frequent or continuous toncilitis
frequent strep
frequent pneumonia
frequent longlasting supposed viral illnesses that linger and linger and linger
everything goes to the lungs for extended periods
headaches
growing pains
skin problems
dandruff
allergies
asthma
continuous swolen glands in neck
low grade fever for years
Night terrors
Prolonged hypnogogic state transitioning to sleep
Sleep paralysis
seizures
coma
 

jeffrez

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I have many of those, definitely. Who doesn't? Most are attributable to several different things, putative b12 deficiency being probably only one of them. Some I only get when I take folate or b12, like the folate now causing OCD, or the hydroxy injections making me feel paranoid. But that went away as soon as I stopped the injections. I think TMG or something related also had a major negative effect on cognition.
 

Freddd

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I have many of those, definitely. Who doesn't? Most are attributable to several different things, putative b12 deficiency being probably only one of them. Some I only get when I take folate or b12, like the folate now causing OCD, or the hydroxy injections making me feel paranoid. But that went away as soon as I stopped the injections. I think TMG or something related also had a major negative effect on cognition.
Hi Mr. Kite,

I'm preparing a an answer to your previous post but wanted to say a couple of things about this list.


I have many of those, definitely. Who doesn't?

Healthy people don't. The devil lies in the details.

Most are attributable to several different things, putative b12 deficiency being probably only one of them.

The usual thinking is that these are most all "non-specific" symptoms meaning they may have many causes and are typically ignored as long as possible for that reason until somebody like you or me becomes really ill with various mysterious diseases. However, the thing that points them straight at mb12/adb12, are the combinations of all these apparently unrelated symptoms. For any 1 of these symptoms alone and not having the others, the probability of b12 deficiency might only be 5%. However, you take 10 items across multiple body systems, ie lack of tissue reproduction, lack of energy, neurological problems, GERD, and so forth the probability approaches 100%. You take 100-200 items and the specific body-adb12, body-mb12, CNS-adb12 and CNS-mb12, and Mfolate deficiencies become clear.

The test is to try one of the 5 star methylb12. Healthy people without symptoms have have no noticeable 2 hour response at all. Terribly deficient people have a knock your socks off response, like you do. Much research says that the ONLY reliable test for b12 deficiency is a trial of b12. Now as mb12/adb12 affect 98% of those symptoms in almost everybody (with cofactors required in a good 20%) and hydroxcbl/cyanocbl only affects about 33% of these symptoms for 2/3 of people, and virtually nothing for the other third, you have already made a definitive test of the problem. You respond very strongly to mb12. This is 100% confirmation of deficiency. That is a major part of the problem in indentifying b12 deficiency, that cyanocbl and hydroxycbl are so limited in what the affect. 50 years of research and a Nobel prize awarded for a laboratory mistake has made the vast majority of b12 deficiency symptoms invisiable and undiagnosable. Treating people with cyanocbl/hydroxycbl can allow 2/3 of the symptoms to worsen, methylation exhaustion (my term) and even more severe startup when the person changes to active b12s and a host of mysterious untreatable conditions. The decades of research and thinking recommending cyanocbl/hydroxycbl for b12 deficiency treatment almost killed me and caused severe mental blindness in all the doctors and tests.

I am basing all this on my own experience as I have walked this path back from the edge of death and multisystem breakdown and helped many others do the same. There is nothing like actual experience to blow holes in all sorts of pet theories. Because I am also a systems analyst and tend to see the patterns in data even with lots of noise present, this became very evident.

So, of the many symptoms there that you have, what ones, all of them, do you have? It can very much clarify what is going on. There are many variations of some of the symptoms and that allows a progression to be seen. Progressions are also a pattern and help pin things down. Many things are there in the "diagnosed" name as well as descriptions. Redundancy in that form can tell a lot about what the person is actually saying. I'm working on a new list with another 70-100 items added as well as distinctions of what they point to. That is a lot of work and I still have some ways to go. Right now I am simulating in my head the program I am designing to do this quite automatically.

One of the things I have done on the way, early on while I was still quite ill but before I was too debilitated to travel, was to question about 1000 people on their symptoms and give them an active b12 or 2. I did this in the course of traveling for business and recreation over a couple of years, and purely dealt with people who appeared reasonably healthy in a business or recreational situation. There were three groupings of people. Those who said they had no symptoms and who had no noticeable response within 2 hours, those who had some or lots of symptoms and had some response, from mild to very strong, within 2 hours, and those who at first said "no symptoms" but after they had a response revised that and said "Oh yes, I had all those non-specific symptoms the docs all said I could ignore as they menat nothing". All in all there wasn't a group with lots of symptoms and no response, though there were some who's response would not have continued without cofactors. However, this did not mean complete lack of response, that was very rare in those with symptoms.

The one big thing that has been made very obvious over time is that a substantial percentage of persons ALSO have comorbidity of other causes which becomes much easier for their docs to diagnose after a couple of hundred other symptoms are cleared away.

If you consider that almost any stressor on the body can trigger susceptible people into a b12 deficiency the apparent "first cause" is often a virus, bacterium,toxin, injury or other cause. However, once that stress has done it's work the syndrome that continues indefinitely and is self sustaining becomes entrenched and treatment of the original cause, if possible, makes little or no difference.

As adb12/mb12 affect over 600 processes in every system of the body, it is the most limiting factor. So while B1 deficiency can certainly cause neuropathy, it is rarely the sole cause. But after the mb12/adb12 is in place then the deficiency in B1 could make a huge difference. Without cofactors, healing is very stop and go, very unpredictable and variable. Sufficiency of all the different things is difficult to come by.

One of the best examples of that is potassium. When a person starts healing with mb12, adb12, Mfolate and any one of a few other cofactors, whatever is the most limiting factor, potassium can plunge within 3 days. While that is a confirmation that the mb12 etc is indeed working, it can create a dangerous situation if the person is unprepared causing all sorts of problems and even death.

Everything you say up to this point screams active b12 and folate deficiencies. There are different or same reasons that the folates cause so much reaction. The inactive ones might be because you can't convert them and they worsen the deficiency or maybe becasue you can. In that case without the mb12 they just throw you deeper into the methyl-trap symptoms. Sometimes a person can't break even. I have found that for a person as deep in the trap as you appear to be, and I was, to be a very exacting thing with startup in a correct order/combination/balance or things go wrong.
 

Freddd

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I've taken folic acid, folinic acid, and l-5 methyl tetrahydrofolate. Originally folinic acid lowered my heart rate into the 40s and completely alleviated OCD. Since I had a severe energy crash last fall, all folates at any dose now cause massive and severe depression, OCD, and GERD so severe it caused ulcers that I am still dealing with from when the 5-mthf triggered the GERD last december. If I took another dose of folate and it caused that same reaction, I would probably be dead from a perforated ulcer. So there is no way possible that I can take any folate at this time.



I thought I had read rich say something about ab12 being okay, just not mb12.



I'm not trying to prove anything, I'm trying to find out what's wrong so I can attempt to fix it. I don't want to get results that aren't going to adequately represent what's going on in my body the majority of the time.



That doesn't seem to be the case based on most people I have read about who have taken the test. Not that the test is essential for treatment, but if richvank, dr. yasko, dr. nelson, etc. are to be believed, most people seem to be having success with the methylation protocol. I don't see how more information can be a bad thing. I know I was mercury poisoned, affecting my glutathione status as well as many other metabolic processes - citric acid/krebs, detox, etc. - and I also know that I have pronounced reactions to the methylation supplements, including the hydroxy injections, the folates, TMG, and SAMe (causes massive depression, also), so it seems to make sense to have a deeper look at those processes.



With all the symptoms from taking methylation substances, it seems reasonable to me to look at both the methylation hypothesis and the 'correct the deficiencies' hypothesis. In this case, the 'correct the deficiency' hypothesis might not be sufficient, because it appears that there could be and probably are underlying metabolic and neurochemical issues that would prevent me from correcting the deficiency without correcting or addressing those other problems first. Ideally the answers to the first hypothesis would lead to the second hypothesis, it seemed to me. From what I have gathered so far, I don't see these issues necessarily as being mutually exclusive, at least.

I'm not sure what symptom list you're referring to, can you provide the exact link? I can tell you without a list that my main symptoms are the fatigue/PEM, and cognitive and mood issues. Everything else is just part of the overall picture - carpal tunnel, immune deficiency, GERD, etc.
Hi Mr. Kite,

Please understand that my viewpoint is colored by the complete and abject failure of approximately 100 practitioners with plenty of theories, none of them correct and all based on 50 years of inactive cobalamin research, over a period of 20 years and $200,000 out of pocket for tests and treatment to do anything worthwhile, even with test results and symptoms staring then in the face that should have told them what was going on. I delivered to them photocopies of the identification of the real active b12s to them starting in 1978 and why the cyanocbl wouldn't work, from the old fashioned all day at the library routine, and all that succeeded in doing was gettiing me called names and kicked out of practices. I have worked in the group health care field (consulting and software) since the early 80s and recognized such behavior was frequent and showed up in the patient satisfaction assessments we made for a variety of group health plans. I haven't been kicked out of a practice since 2003, when I started the mb12 since I can demonstrate "miraculous" results. My current docs have decided to assist me rather than be roadblocks to effective care. There was no possible solution until 1998 when mb12 became widely available commercially in the USA.

Methylation block is not a cause, but rather a result. It can result from taking cyanocbl, hydroxycbl, folic acid and maybe folinic acid, glutathione (precursors) or nothing at all. It appears to be triggered, when the person is sitting on the edge, by almost any stress that challenges the biology enough, whether illness, injury, toxins or even vaccination of any kind and by glutathione.

I have stated before that I see no evidence at all that methylation block or methyl-trap can even occur if the person is taking mb12 in the first place in the absence of glutathione (it can overcome any amount of mb12/adb12/methylfolate).

Looking at the info you have so far provided, it is clear you are quite deficient. Taking the adb12 in oral capsule form might help considerably as 100mcg/day will add up and start the body mitochondria working. There are specific cofactors that go along with this that can improve energy generation and reverse the "energy crash" in a matter of days or weeks. If there is CNS/CSF problems of low cobalamin levels, this will become far more apparent as the body symptoms start clearing up. Sarting the mb12, even at low doses will help considerably. After you reach a higher level of mb12 throughout your body the Metafolin will likely become quite tolerable. Again, if there is a problem that isn't an artifact of the methyl-trap, these folate deficiency symptoms will rise out of the surrounding symptoms like a small island only visible at low tide.

My biggest concern is that if you have CNS degeneration going on, and the CSF/CNS cobalamin deficiency found in research of those with CFS/FMS, is that this will not be stopped and will continue to worsen despite adequate body levels of adb12/mb12. That happened for me. Quicker recognition of the problem and knowledge of the treatment might have allowed me to keep full functionality in my feet and nervous system. As it is I am fighting a rear guard action that is only marginally holding the line against continued CNS deterioration. To quote a former VP, "It is a terrible thing to loose one's mind".
 

jeffrez

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Freddd - i PMed you the symptom list. Reading your other posts now, thanks for the explanations.
 

Freddd

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Another brand question, country life also offers a methyl B12. Since their adb12 is reported as being good, I wonder if their mb12 was one of the ones tested and found to be less useful, or if it was not tested. Thanks!

Updte: Freddd I think I found your review on Iherb of this product. Thanks!

http://www.iherb.com/Country-Life-S...vor-3000-mcg-50-Sublingual-Lozenges/4461?at=1

Hi L'engle,

7 to 8 years ago, when I did the tests, There was Superior which was tested, and it came in at the top of the mediocre brands, may 30 on the 0-100 scale. We all had backsliding on it. It could not quite maintain the gains made on Jarrow and/or Enzy, but it couldn't make any gains either. The slideback was slower than other brands. That was before it was aquired by Country Life. Now they may source the mb12 crystal differently or not. I can't tell you. I did not review the Superior mb12, just the Country Life dibencozide.
 

Freddd

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Jackpot

Hi again Freddd,

I've had the computer off all day today, and had some time to clear my foggy, foggy brain, and now can see and hopefully understand a little bit better what you're talking about here.



I realized last night, that perhaps part of my 'crash' was due mainly to the excessive folates that were prescribed (four different brands, with only one of them being a dose of 1/4 tab), and the 2 b12's were the country life dibencozide (ADb12?), and hydroxyb12 drops from Yasko. (I chose the drops rather than the sublingual because whenever I have to hold something in my mouth for too long -- which I know is part of your protocol -- my salivary glands just ache and sometimes sting like crazy. Not enough amylase in my saliva?)

Anyway, I didn't take any methyl-b12 this past fall during the methylation ramp-up so I can't blame it on that, unless perhaps some of the hydroxy was converted, but still, now I'm starting to have doubts about that as well. Plus, I've been off of the b12's and the folates (with the exception of a trial of a b-complex with results that don't seem to be positive), yet I STILL have very severe anxiety, plus muscle twitching in my feet, which I've had off and on for years, but 'on' for the last couple of months, and then this light neuropathy that also comes and goes, but has been more persistent.

So, I guess I'm trying to say -- perhaps in my case -- that a trial of methyl-b12 might actually be worth considering. I'm not sure how I would do it considering the salivary gland issue, and would certainly want to be very cautious about it. But my symptoms -- at least the severe anxiety hasn't gotten much better at all, and it's been four months now, so that can't be from excess b12 or folates anymore, can it?

Plus, your description of how much mb12 would be required to methylate a certain amount of mercury also jives with what Andrew Cutler says. (And I'm not mentioning him (again) because I think he's right and everyone else is wrong, but because he studied heavy metal issues for years, and recovered from merc poisoning using ALA, getting his PhD in the process.)
I can post a link to his comments if you like, but it's also easily googled.

Plus -- Kurt has been taking mb12 for at least six months now (along with some co-factors) and has done very well -- and he still has his fillings in his mouth. B6 was apparently also very important for him, but that seems to set me off -- definitely -- because of sulfation issues.



But you have been able to heal, right -- even after multiple years of having extreme neuropathy in both feet? And my neuropathy/twitching has come and gone -- sometimes has gone for years (the twitching especially), so I tend to, believe it or not, tend to feel that sometimes this 'permanent' damage may not be so permanent. What say you? :)



Don't get me started with SSRI's! Years ago my bosses insisted I see a REAL doctor and get some antidepressants, each and every one of which made me physically and mentally worse. In hindsight I think I can almost say that these past 3 months of hellish symptoms have been preferable over what I went through 12 years ago, but everyone reacts to those drugs differently. SAM-e is the one 'antidepressant' that will really pull me out of a hole, but it could be making me a little too wired now. Not sure however.



Again, Freddd, I'm very sorry about what happened in your life, and grateful to you for the courage to express what you went through, both physically and mentally. Takes a lot of courage to go through that and come out the other side with a new life and you should be commended.

I think that caution is still warranted, especially when you're talking to patients like myself with huge brain fog and concentration issues. Like I said above, it wasn't until after I posted last night that I realized you were kind of saying some of the same things I was -- that certain, specific b12 and folates may cause the worst of the negative reactions, whereas the adb12, the mb12 and the Metafolin specifically, may be helpful?

Am I starting to understand you correctly?

Thanks Freddd.

Hi Dan,

Like I said above, it wasn't until after I posted last night that I realized you were kind of saying some of the same things I was -- that certain, specific b12 and folates may cause the worst of the negative reactions, whereas the adb12, the mb12 and the Metafolin specifically, may be helpful?


JACKPOT

You have asked the right question at the right time. I now have most of the answer which jumped out at me when I saw your post. Thank you.

The question that was nagging at me for the past 8 years concerned folic acid. I have done very large amounts of reading of journals and much other material about b12 and folates. Even 8 years ago there was some speculation that folic acid could block or in some other way hinder actual active folate. That was impossible to test until Metafolin became easily available. I share a genetic trait with about half the population that I can't convert folic acid to methylfolate in sufficient quantity to not be deficient. However, taking 400mcg of folic acid twice a day didn't seem to have any negative effect as long as I took sufficient Metafolin. My folate specific symptoms would recede. However I have recently performed another test which I decided I needed to do after the experience with Folinic acid. Guess what, more folic acid at the same times as the Metafolin dose with my b12 dose, taken in the form of adb12 with folic acid (Country Life Dibencozide) causes my leading edge folate deficiency symptoms to start coming back in 6-7 days. It BLOCKS the metafolin when taken at the same time (peaks coincide) from being effective. It causes folate deficiency symptoms just slightly slower than glutathione, in sufficient quantity. The Folinic acid at just 1 x 800mcg per day caused leading edge folate deficiency symptoms in 30 days. If I had taken it 3 times a day I bet it would have happened in the same 6-7 days as the folic acid. Obviously I am not going to keep taking it at that quantity and frequency until even more deficiency symptoms set in.


To sum it up:


  1. Folic acid taken several times per day along with larger amounts of Metafolin blocks the Metafolin causing overt folate deficiency in 6-7 days.
  2. Folinic acid taken as 1 single 800mcg dose daily blocks 4800mcg of Metafolin in about 30 days sufficiently to cause overt folate deficiency symptoms.
  3. Glutathione starts causing overt folate deficiency symptoms starting within hours of a sufficient dose and is called a "detox" reaction.
  4. NAC is reported by others, to cause an identical "detox" reaction as glutathione within some unknown period, probably dependent upon dose.
  5. Hard folate deficiency symptoms are commonly called "detox" reactions.

Folic acid and folinic acid do NOT predict Metafolin response. In fact they can cause the opposite effect in some unkown percentage of people, perhaps 50% if it is genetic.

Cyanocbl does NOT predict Adb12 response or mb12 response and can worsen 2/3 of all b12 deficiency symptoms in perhaps 100% and worsen 100% of symptoms in perhaps 1/3 of people.

Hydroxycbl does NOT predict Adb12 response or mb12 response and can worsen approximately 2/3 of all b12 deficiency symptoms in perhaps 100% of people and worsen approximately 100% of symptoms in perhaps 1/3 of people.

The public health community was disappointed that folic acid flour supplementation reduced neural tube defects by only 27%. They were expecting far more effectiveness.

Clearly the word "detox" is misapplied in identifying folate deficiency as a "detox" reaction.

I realized last night, that perhaps part of my 'crash' was due mainly to the excessive folates that were prescribed (four different brands, with only one of them being a dose of 1/4 tab),

Dan, I would expect that your crash was because of induced folate deficiency. You were taking sufficient folic or folinic acid to block methylfolate in your body inducing a severe folate deficiency. Further the hydroxb12 worsened many of your b12 deficiency symptoms and wouldn't work for many of the rest because of lack of methylfolate.

We're all different...and those differences need to be taken into account when discussing certain reactions. Certainly no one can state that we'll all react the same way one particular person does -- we all have different factors that went into our becoming sick.

I would predict that you and I are far more similar in our response to folic acid and folinic acid than either of us had any reason to think yesterday.

yet I STILL have very severe anxiety, plus muscle twitching in my feet, which I've had off and on for years, but 'on' for the last couple of months, and then this light neuropathy that also comes and goes, but has been more persistent.

The deficiency symptoms will last until you take methylb12 and metafolin. Reducing the adb12 to 1 or two doses of whatever size a week might help a lot, limiting the damage the folic acid can do to 24 hours a week. No wonder a once a week larger dose of adb12 worked so well for me. It limited the hours the folic acid was in my blood.

So, I guess I'm trying to say -- perhaps in my case -- that a trial of methyl-b12 might actually be worth considering. I'm not sure how I would do it considering the salivary gland issue, and would certainly want to be very cautious about it. But my symptoms -- at least the severe anxiety hasn't gotten much better at all, and it's been four months now, so that can't be from excess b12 or folates anymore, can it?

It never was from excess. It is induced folate deficiency and b12 deficiency from the forms that you took.

When I first came to these forums, I wondered why so many people taking hydroxycbl and Folinic acid had such strong "detox"
symptoms" that I said at the time looked like intensified deficiency symptoms. Now I know.
 

Freddd

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REASONS WHY B12 AND FOLATE THERAPIES DON'T WORK FOR MANY PEOPLE
Version 2.0 - 03/10/11



1. They take an inactive b12, either cyanob12 or hydroxyb12. The research validating their use was primarily for reducing blood cell size in Pernicious Anemia, keeping the serum b12 level over 300pg/ml at the end of the period between injections. They make a statistically significant effect that can be seen in lab tests in a significant percentage of people compared to placebo. They do not heal most damage done by active b12 deficiencies and have little or no effect on the vast majority of symptoms. They may even block active b12 from receptor sites hindering the effects of real b12. They both cause a keyhole effect of having only a very limited amount (estimated at 10mcg/day) that can actually be bound and converted to active forms. They in no way increase the level of unbound active cobalamins which appear required for most healing. They do nothing beneficial in a substantial percentage of people (20-40%) while giving the illusion that the problem is being treated and if it doesnt work, oh well, thats the accepted therapy. There is no dose proportionate healing with these inactive b12s because it all has to go through this keyhole. Some people are totally incapable of converting these to active forms because they lack the enzyme
2. They take active b12 as an oral tablet reducing absorbtion to below 1%. A 1000mcg active b12 oral tablet might bind as much as 10mcg of b12. Again the b12 has to be squeezed through a keyhole that limits the amount and is subject to binding problems in the person whether genetic or acquired.
3. They take a sublingual tablet of active b12 and chew it or slurp it down quickly reducing absorbtion back to that same 1% and limited to binding capacity. With sublingual tablets absorbtion is proportionate to time in contact with tissues. I performed a series of absorbtion tests comparing sublingual absorbtion to injection via hypersensitive response and urine colorimetry.
4. Of the many brands of sublingual methylb12 only some are very effective. Some are completely ineffective and some have a little effect.
5. For injectable methylb12, if it is exposed to too much light (very little light actually is too much) it breaks down. Broken down methylb12 is hydroxyb12. It doesnt work at healing brain/cord problems of those who have a presumed low CSF cobalamin level. That requires a flood of unbound methylb12 and adenosylb12 (2 separate deficiencies) that can enter by diffusion. Adenosylb12 from sublinguals can ride along with injected methylb12.
6. They dont take BOTH active b12s.
7. They dont take enough active b12s for the purpose.
8. Lack of methylfolate
9. Folic acid is taken which can block at least 4 times as much methylfolate from being active inducing folate deficiency even if methylfolate is also taken. These induced deficiency symptoms are often called "detox" symptoms.
10. Folinic acid is taken which can block at least 5 times as much methylfolate from being active inducing folate deficiency even if methylfolate is also taken. These induced deficiency symptoms are often called "detox" symptoms.
11. Lack of other critical cofactors.
12. Lack of basic cofactors.

 
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Hi Freddd,

Couple of questions following recents posts.

1. Findings about the use of folic acid. Based upon this would you now use ABD12 by Country life with caution because of the folic acid content? Especially if you have anxiety/anxiety components to your CFS. (I certainly encounter higher than usual anxiety each time I've attempted to start the programme. This may be in part due to missing some of the co-factors.)

2. Just curious. The list of symptoms of B12 deficiency; has it been compiled from published medical literature or posts from sufferers.


Many thanks,

Alan.
 

Shellbell

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Hi Freddd,

Another question to add to the others, do we need to find a replacement for B-Right because of the folic acid?

Thanks,
Shellbell
 

Freddd

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Hi Freddd,

Couple of questions following recents posts.

1. Findings about the use of folic acid. Based upon this would you now use ABD12 by Country life with caution because of the folic acid content? Especially if you have anxiety/anxiety components to your CFS. (I certainly encounter higher than usual anxiety each time I've attempted to start the programme. This may be in part due to missing some of the co-factors.)

2. Just curious. The list of symptoms of B12 deficiency; has it been compiled from published medical literature or posts from sufferers.


Many thanks,

Alan.
Hi Alan,

2. Just curious. The list of symptoms of B12 deficiency; has it been compiled from published medical literature or posts from sufferers.

The symptoms list is compiled from lists from multiple countries for starters for b12 and folate. When there are official health services I used those. I used the merck manual and other diagnosis guides. The USA lists focus on those things that cyanocbl might help, the UK (health service list) list on Hydroxycbl helped symptoms, Australia, Canada, New Zealand, India and those in English from Japan. Each country's idea of what should be on the list is different and no two of the lists are the same. MB12/adb12 work on all the symptoms any other form helps and then a lot more. Then there are things that various folks have that responded to mb12/adb12/metafolin. Then a single line like "peripheral neuropathy" was broken down to symptoms of peripheral neuropathy. The "muscle pain" was broken down to a dozen or so different muscle pains as experienced by me and others that is helped. Then there are often two or more forms of some things including the "sign" as the doctor might describe it and common language descriptions as people who experience might describe it. The purpose was to have people be able to find a suitable description that they experienced or were told by their doctor they have. The greater detail allows a progression to be described over time so for instance both early neuropathy symptoms and later stage symptoms are listed. Many of the early symptoms disappear as they progress to later symptoms. For instance I have mostly late stage neuropathy symptoms now without the earliest ones present in the last 15 years.


1. Findings about the use of folic acid. Based upon this would you now use ABD12 by Country life with caution because of the folic acid content? Especially if you have anxiety/anxiety components to your CFS. (I certainly encounter higher than usual anxiety each time I've attempted to start the programme. This may be in part due to missing some of the co-factors.)


I will still use B-right and Country Life adb12 for now limiting the frequency and taking the Metafolin at different times, which worked until I took to large a dose of folic acid too often.

Metafolin, mb12 and adb12 directly affect the neurology and neurotransmitters as do other things. I don't know why some people react with anxiety. Often that is a b12 deficiency symptoms so for it to intensify if present isn't surprising. If it was a previous symptom on the way to worse deficiency then it is common to go back to early forms of symptoms. And some people may be having anxiety attacks for reasons that are not clear. Also, some people have experienced mood and personality changes by getting adb12/mb12 out of balance and were able to adjust things and have the out of balance symptoms subside. Some people are clearly inclined to tell themselves scary stories about this and many other things. There could be many reasons, even multiple reasons for any given person, so for any given person I really couldn't say.
 

*GG*

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Hi Freddd,

Couple of questions following recents posts.

1. Findings about the use of folic acid. Based upon this would you now use ABD12 by Country life with caution because of the folic acid content? Especially if you have anxiety/anxiety components to your CFS. (I certainly encounter higher than usual anxiety each time I've attempted to start the programme. This may be in part due to missing some of the co-factors.)

2. Just curious. The list of symptoms of B12 deficiency; has it been compiled from published medical literature or posts from sufferers.


Many thanks,

Alan.
My Dr just prescribed me Folinic Acid, 1mg, 2 times per day. I dropped the script off at the Pharmacy, and they need to clarify since it only comes in 5mg is what they said. Anyone know better about this?

GG
 

Adster

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Freddd or Rich, do you have any thoughts as to why I might get a metallic taste in my mouth a few hours after my mb12 shot? I'm injecting every second day and it seems to be mostly gone by the next morning. Thanks :)
 

richvank

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Freddd or Rich, do you have any thoughts as to why I might get a metallic taste in my mouth a few hours after my mb12 shot? I'm injecting every second day and it seems to be mostly gone by the next morning. Thanks :)
Hi, Adster.

I don't know for sure, but my guess is that the B12 is stimulating your methylation cycle, which controls the sulfur metabolism, and the sulfur metabolism is heavily involved in the detoxication system. Perhaps your detox system is mobilizing metals, and some of this gets into the saliva from the blood.

Best regards,

Rich
 

Freddd

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Freddd or Rich, do you have any thoughts as to why I might get a metallic taste in my mouth a few hours after my mb12 shot? I'm injecting every second day and it seems to be mostly gone by the next morning. Thanks :)
Hi Adster,

That is difficult to say. I've never had that specific thing. However, I have had radical changes in how things taste, hallucinations of taste, and all manner of things as the nerves worked differently. Perhaps it is more signal through still damaged nerves. Perhaps it is a change in balance of how you are tasting things. Perhaps it is tasting something that has been there but untastable. My sense of taste came back in pieces over about 3 or 4 days and things tasted radically different each day. Perhaps it is a change in the chemical balance of your saliva as all sorts of reactions start up. One thing I can assure of, it will keep changing.
 

Adster

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Thanks Freddd and Rich. It's not unbearable and is not a part of any other worrying symptoms so I'll just accept it. It tastes exactly like Zinc tally liquid(when I can taste it). My dietitian suggested that it might be zinc depletion due to increased methylation.