B-12 - The Hidden Story

[Freddd]

She is taking adb12 and l-carnitine fumarate.

I would say she had almost zero reaction for two weeks on:

Mb12, adb12, A, C, D, potassium, TMG, SAMe, Methylfolate, Calcium, B-Right. One night she took a "one-a-day" multivitamin and had spasms when going to sleep, similar to what oral cyanoB12 caused.

Then we added the l-carnitine fumarate, E, and zinc. Then, came cramping, intensified muscle pain and sensitivity to touch. Also, intense depression. I have never seen her this depressed. We upped the potassium and the cramps subsided immediately.

If I keep pushing this forward, is that the quickest way to get over the hump? I felt like this would be the best approach as she is not exactly enthusiastic about this approach. I don't know if I could talk her into months of trial and error. I need a little momentum to get her on board.

Thanks for your help and continued support. This is a really tough time for us.

Hi Red,

Things are clearer. Somebody else has reported depression with the low potassium and the list of symptoms lists the posibllity of mood changes. By "sensitivity to touch" do you mean hypersensitive skin? That is a result of nerves coming back. I'm having it on my feet right now. The l-carnitine fumarate can be "the last thing in" effect. If that is what activated the mitochondria and started the healing, which triggerred the low potassium and spasms, that makes a lot of sense and it did for me too. That would make a lot of sense of this. And again, if that is the case, healing is now under way. That is what the low potassium demonstrates. I don't know of any other cause. Chances are that the sudden healing has put a strain on the weakest links nutritionally. As things slow down, because a lot of tissues will heal in a few weeks, everything ought to get better. Had you wife lost a lot of muscle mass the past few years? That can be a result of mitochondrial malfunction. I put on 50 pounds of muscle in the 6 months after I started l-carnitine fumarate. If this is the case she has to be sure of getting plenty of protein and other nutrients.

I can't tell you exactly what is causing the problem. That is one reason we take the shotgun approach. You might try playing with increasing some of the doses. More zinc might make a difference. More Mb12 or methylfolate might do it. More omega3 oils might help. Often the changes will be obvious within hours to a couple of days with these things. I'm not sure that the one-a-day vitamin would be the cause of the cramps.

I know it seems like it will only get worse if it goes on. But once you hit the critical cofactor that kicks things off, healing often starts with a bang, as it has here. The potassium demonstrates that. She is forming cells at a high rate. Something is getting fixed. Generally it's all up from here. Others that have played start and stop at this point found that things get worse fast after stopping. Keep going, one day at a time and pretty soon she will know what is getting better and things will start improving.

The mitochondrial problems were the tipoff for the l-carnitine-fumarate and the response has been huge. Decreasing the l-carnitine might slow things down a bit and be more comfortable or it might not. A change in carnitine amiount is felt within 36 hours or so genderally. Hang in there. Good luck

 

[Red04]

Thanks for everything Freddd.

By sensitivity to touch, I meant if I gently pat her on the back, it is very painful. This has been a symptom for a while. But it seems to have magnified by a factor of 2. Her skin has always been sensitive as well. She gets hives from stress, heat and alcohol.

One more thing. Her depression seems to be "surface depression". She cries for 5 minutes an then is fine for an hour. Then I say anything at all or something really small triggers a crying episode. It's not a deep down, can't get out of bed depression.

I am going to increase some co-factors one by one and try to get this thing turned around. Thanks a million.

 

[Freddd]

Thanks for everything Freddd.

By sensitivity to touch, I meant if I gently pat her on the back, it is very painful. This has been a symptom for a while. But it seems to have magnified by a factor of 2. Her skin has always been sensitive as well. She gets hives from stress, heat and alcohol.

One more thing. Her depression seems to be "surface depression". She cries for 5 minutes an then is fine for an hour. Then I say anything at all or something really small triggers a crying episode. It's not a deep down, can't get out of bed depression.

I am going to increase some co-factors one by one and try to get this thing turned around. Thanks a million.

Hi Red,

sensitivity to touch, I meant if I gently pat her on the back, it is very painful

I had this going on for about 20 years. It was a sore point between me and my wife, quite literally. Now my sense of touch is pretty normal on almost my entire body. Areas coming back from numb go thjrough a hypersensitive phase.

Her skin has always been sensitive as well. She gets hives from stress, heat and alcohol.

My skin was sensitive to almost everyuthing since childhood; textures, chemicals, stress, heat - you name it. That is normal now too. My MCS symptoms are gone. My hyperresponsive, hives and rashes and irritaqtions etc, is gone. It seem charactersitic of the b12/methylfolate deficiency state.

One more thing. Her depression seems to be "surface depression". She cries for 5 minutes an then is fine for an hour. Then I say anything at all or something really small triggers a crying episode. It's not a deep down, can't get out of bed depression.

This is a bingo too. Rapidly changing, volitile, emotions. Also, for me when my neurology started working again I started feeling all the emotions that were so flattened for decades. Also, unprocessed experiences from 30 years back even, all started hitting at once. After recovering to an extent I went through a period of mourning for my life that was long gone. I still have some of that cropping up. The decades of illness and disability cost me everything in my life I used to care about, my wife, my young children, my business, my sports, my interests, even my ability to read for a while. Right now, I am about 2/3 through the first novel I have read in maybe 15 years. I used to read at least 100 books per year, many of therm novels. As I have come back and the neurology has healed I have changed. My wife divorced me and when she remarried she said that he was "a lot like you used to be". I am not remotely the guy she had married 33 years before. After several NDEs I was a complete stranger to her and she was a complete stranger to me. After the divorce she didn't see me in person for about 9 months. When she came over one day, knocked on the door and I let her in. She looked at me and then at the other person there and asked "Where is Fred, I was supposed to meet him here?". I had changed visually that much in 9 months of healing. The changes were internal as well as external. Dying would have been easier. I'm appreciating being alive again. Good luck.

 

[Red04]

Hi Red,

sensitivity to touch, I meant if I gently pat her on the back, it is very painful

I had this going on for about 20 years. It was a sore point between me and my wife, quite literally. Now my sense of touch is pretty normal on almost my entire body. Areas coming back from numb go thjrough a hypersensitive phase.

Her skin has always been sensitive as well. She gets hives from stress, heat and alcohol.

My skin was sensitive to almost everyuthing since childhood; textures, chemicals, stress, heat - you name it. That is normal now too. My MCS symptoms are gone. My hyperresponsive, hives and rashes and irritaqtions etc, is gone. It seem charactersitic of the b12/methylfolate deficiency state.

One more thing. Her depression seems to be "surface depression". She cries for 5 minutes an then is fine for an hour. Then I say anything at all or something really small triggers a crying episode. It's not a deep down, can't get out of bed depression.

This is a bingo too. Rapidly changing, volitile, emotions. Also, for me when my neurology started working again I started feeling all the emotions that were so flattened for decades. Also, unprocessed experiences from 30 years back even, all started hitting at once. After recovering to an extent I went through a period of mourning for my life that was long gone. I still have some of that cropping up. The decades of illness and disability cost me everything in my life I used to care about, my wife, my young children, my business, my sports, my interests, even my ability to read for a while. Right now, I am about 2/3 through the first novel I have read in maybe 15 years. I used to read at least 100 books per year, many of therm novels. As I have come back and the neurology has healed I have changed. My wife divorced me and when she remarried she said that he was "a lot like you used to be". I am not remotely the guy she had married 33 years before. After several NDEs I was a complete stranger to her and she was a complete stranger to me. After the divorce she didn't see me in person for about 9 months. When she came over one day, knocked on the door and I let her in. She looked at me and then at the other person there and asked "Where is Fred, I was supposed to meet him here?". I had changed visually that much in 9 months of healing. The changes were internal as well as external. Dying would have been easier. I'm appreciating being alive again. Good luck.

That's nuts Freddd. I am sorry you lost so much to this condition. Reminds of a quote by Holocaust survivor Viktor Frankl “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.”

It seems like for whatever reason you are helping people get better. I don't know if "Freddd's Protocol" is going to improve my wifes condition, but this is more hope than any medical doc has given me in 1.5 years and 10's of thousands of dollars of trying. I am glad you didn't take the easier path. Thanks Freddd. I may need some more advice down the road. Let me kow if there is anything I can do to help you out.

 

[Red04]

update/question

Hi Freddd,

Quick update and a question. Wife hasn't really seen any major improvement. Some of it may be hard to track and she has come off a lot of medicines. The improvement would have to be very noticeable before she would admit it. She seems to be sleeping through the night, despite coming off all her sleeping meds. Some of the startup symptoms seem to have subsided.

Yesterday she added a second MB12 5mg tab as soon as her first one dissolved (45 min). She got immediate nausea, jaw pain (she sufferes from TMJ and has had jaw surgery), and a pointed (all in one spot) headache on the same side of her head as the jaw pain.

She immediately spit out the second B12 and had nausea for an hour.

What should we do next. Add something else first? Push through? Take the second MB12 in the morning?

Thanks for any advice.

 

[Freddd]

Hi Freddd,

Quick update and a question. Wife hasn't really seen any major improvement. Some of it may be hard to track and she has come off a lot of medicines. The improvement would have to be very noticeable before she would admit it. She seems to be sleeping through the night, despite coming off all her sleeping meds. Some of the startup symptoms seem to have subsided.

Yesterday she added a second MB12 5mg tab as soon as her first one dissolved (45 min). She got immediate nausea, jaw pain (she sufferes from TMJ and has had jaw surgery), and a pointed (all in one spot) headache on the same side of her head as the jaw pain.

She immediately spit out the second B12 and had nausea for an hour.

What should we do next. Add something else first? Push through? Take the second MB12 in the morning?

Thanks for any advice.

Hi Red,

I'm not sure what the connection to nausea can be. Often its a reaction to the multitude of supplements with a meal without enough different things. For me, I have to have some toast or cereal or friut or something with the scambled eggs or I, and others I know get intense nausea. Also, if all the vitamins are taken in a clump after the food, it produces irritation of the stomach. The best advice for that I have found was to eat the first third of the meal, take the vitamins a few at a time then some food, then more pills etc, and then the last third or quarter of the meal on top of the vitamins.

If that is not the case, it was a shot in the dark anyway. Try taking the second mb12 12 hours later. This will keep the average serum level up without hitting as high a peak. Also, the same thing may not happen a second time even with the same stimulus.

Having the jaw pain, one sided headache and the nausea happen together screams "Nerves returning to function" to me. I had terrible jaw pain and headaches for decades. The headaches appeared related to muscle spasms in neck and head and what felt like terribly inflamed veins in my scalp and perhaps elsewhere. It was a combination of constantly tight and irritable muscles caused by mb12/adb12/methylfolate/l-carnitine-fumarate deficiencies and a bad fitting crown. I also had years and years of nausea caused by the same deficiencies. They are all 100% gone. When more feeling returns to a still inflammed stomach nausea can certainly be a temporary result.

She seems to be sleeping through the night, despite coming off all her sleeping meds.

All sorts of sleep disorders are caused by mb12 deficiency. Again, this is a sign of healing. Other healing will pick up speed as sleep is better.


Some of the startup symptoms seem to have subsided

That's good, and expected. Keeping track of what changes day by day will in fact demonstrate all the changes that are actually going on. These things happen at the pace of dividing cells. There are no trumpet fanfares annoucing HEALING IS NOW HAPPENING! There is no anouncement saying "Note this well as this is the last time XXXX will happen". If she doesn't keep track of everything that changes what goes away will be forgotten almost as soon as it no longer grabs attention and what is still there will fill awareness 100%. From here, it's hard to believe how miserable I was. I can go over a list of symptoms and say I used to have lots of them, but that lacks the immediacy of expieriencing them.

Everything you say appears to indicate that your wife is having a very excellent response and healing is under way. In many sensory matters our senses need a certain threshold of change for it to be perceivable. The amount of change needed is about 1/3 of a doubling or halving. A 1% per day change is not noticable. However, in a week some changes may be evident. In a month more are. The only quick things noticable are some functional changes which, if not affected in the first place, never are seen. With most for instance there are some functional changes that may be apparant very quickly and others that are very slow as healing actually occurs. Also, and this is where the fine tuning, the customizing, comes in. Things don't heal until all the necesary factiors are present and until the things that have to heal before they can heal are healed. It is a journey of 100,000 steps. 999,999 of them are still different ways for things to be wrong. What happens is that some things drop off entirely after quietly fading away. These changes can be upsetting because they are still thousands of times quicker than when they were deteriorating and seem so normal over ther years.

I will say that once I discovered that starting another sublingual as soon as the first is dissolved increased the response, which was often unpleasant, I kept taking them that way and all the startup responses came to a close within a ccouple of weeks as they ceased to have any immediate effects as everything already had all the b12 it could use.

I then used startup responses to all sorts of things as my signposts. That method only caused problems once and those were a doozy; glutathione in retrospect has cost me at least two years on neurological improvment and I am still treading the same ground over again that I had before I started it. Knowing which signposts to follow is important.

 

[Indica]

explained very well and good links to it. Congratulations and thank you very much.

 

[Cort]

I take it that these are still the basics for Freddd's approach?

Absolutely critical minimums for basic healing.

• Jarrow Formulas 5mg Methyl B12, under upper lip or tongue for at least 45 minutes for best effectiveness
• Country Life Dibencozide (adenosylb12) 3mg under upper lip or tongue for at least 45 minutes for best effectiveness
• Solgar Metafolin 800mcg
• Jarrow B-Right b-complex, 1 capsule twice a day
• Potassium, your choice of brand and form - this is insurance against hypokalemia triggered by sudden healing and potentially fatal - if you have blood tests, potassium is usually checked, midrange, around 4.5 is good. Some people will have problems at bottom of "normal" range, 3.5-4.0 as I do.
• Omega3 fishoils - essential for myelin sheathing for the nerves, many brands will do, 2-6+ capsules per day, I buy it at Costco, house brand. This is available in many supermarkets.

Essential, usually needs supplementing

• Zinc - 50 mg
• Calcium/magnesium supplement
• D - 3000-5000 IU total
• A&D from fish oil, 10,000-(400-800-1000) Vitamin A should be 10,000, D might be any of 3 numbers with additional D to be taken
• Vitamin E, NOW Foods Gamma E complex
• Vitamin C – 4000+mg/day

 

[Cort]

I take it that these are still the basics for Freddd's approach?

Absolutely critical minimums for basic healing.

• Jarrow Formulas 5mg Methyl B12, under upper lip or tongue for at least 45 minutes for best effectiveness
• Country Life Dibencozide (adenosylb12) 3mg under upper lip or tongue for at least 45 minutes for best effectiveness
• Solgar Metafolin 800mcg
• Jarrow B-Right b-complex, 1 capsule twice a day
• Potassium, your choice of brand and form - this is insurance against hypokalemia triggered by sudden healing and potentially fatal - if you have blood tests, potassium is usually checked, midrange, around 4.5 is good. Some people will have problems at bottom of "normal" range, 3.5-4.0 as I do.
• Omega3 fishoils - essential for myelin sheathing for the nerves, many brands will do, 2-6+ capsules per day, I buy it at Costco, house brand. This is available in many supermarkets.

Essential, usually needs supplementing

• Zinc - 50 mg
• Calcium/magnesium supplement
• D - 3000-5000 IU total
• A&D from fish oil, 10,000-(400-800-1000) Vitamin A should be 10,000, D might be any of 3 numbers with additional D to be taken
• Vitamin E, NOW Foods Gamma E complex
• Vitamin C 4000+mg/day

 

[Cort]

I take it these are still good guidelines to start this process

Absolutely critical minimums for basic healing.

• Jarrow Formulas 5mg Methyl B12, under upper lip or tongue for at least 45 minutes for best effectiveness
• Country Life Dibencozide (adenosylb12) 3mg under upper lip or tongue for at least 45 minutes for best effectiveness
• Solgar Metafolin 800mcg
• Jarrow B-Right b-complex, 1 capsule twice a day
• Potassium, your choice of brand and form - this is insurance against hypokalemia triggered by sudden healing and potentially fatal - if you have blood tests, potassium is usually checked, midrange, around 4.5 is good. Some people will have problems at bottom of "normal" range, 3.5-4.0 as I do.
• Omega3 fishoils - essential for myelin sheathing for the nerves, many brands will do, 2-6+ capsules per day, I buy it at Costco, house brand. This is available in many supermarkets.

Essential, usually needs supplementing

• Zinc - 50 mg
• Calcium/magnesium supplement
• D - 3000-5000 IU total
• A&D from fish oil, 10,000-(400-800-1000) Vitamin A should be 10,000, D might be any of 3 numbers with additional D to be taken
• Vitamin E, NOW Foods Gamma E complex
• Vitamin C 4000+mg/day

 

[LaurieL]

I discovered this thread about a month ago while researching what could possibly be wrong with me. I have read the first 85 pages of this thread thus far and striving to understand it all. I did start Freddds protocol. I am on day three. Prior to learning the gistics of it all and its importance, I used what I had on hand until I could order the elements given by Freddd.

In using what I had on hand, come to find out, I was using the entirely wrong Vitamin B. Cyano. These were small microdots. I also used the liquid B complex I had on hand as well as 800 mgs of folic acid. I also supplemented seperately with B1 and biotin. Prior to this I had just started to take zinc as well. I have been on many other supplements as well, will list another time.

With the addition of zinc, I had a small reaction of which dissappated in a couple of weeks, and then with the additon of the wrong B's and folic acid, I had a more servere reaction quite similar to what has been described here. I had a headache so bad for a few days it would make most vomit, but I couldn't because it simply would of hurt to bad. Body aches, and hot flashes. My urine changed to a browninsh yellow, and it stank like rotting..... something or another. My body odor was also something else for a couple of weeks. Then after all the pain and all the sleep, the energy that kicked in was surprising.

So then I go to the supplements recommended here. I am on day three. I started with 3 mgs Adeno, two B Complex, and 5 mgs methyl per day, doses to equal total given at twice per day. I have yet to add the methylfolate. (I suspect the folates) There was some adjustment, some reaction, but nothing like I experienced on the "wrong" stuff. I have a slight headache, my feet, especially my left is painful, like it was when I first came down with this, my neck is stiff and sore. The hot flashes or intermittent fevers have continued. I have night sweats again, my body temp which has been low for years, is now much higher. I have been noticing a clarity in my eyesight. Nothing profound, like a slap in the face type of thing, but I have been noticing a better clarity. Edges, colors, and night vision. It would seem the excess mucous I was producing in my nasal cavaties has stopped and what I do produce is clear instead of yellow.

A couple of concerns. The night sweating and fevers. And intermittent extreme itching. And my skin is all broken out although healing times have improved. The breakout concerns me the most. It is quite extensive, covering the backs of my arms, my hands and fingers, my neck where it hurts, my chest, and back, and upper thighs. At this point in time, I believe it is somewhat downgrading, as I don't seem to be generating new involvement like I was there for a week and they seem to be healing much better than any injuries to my skin I have had in the past since developing my problems.

Anyone with similar experiences? I do not believe this is an allergic reaction and do suspect a wierd detox going on.

Laurie

 

[xchocoholic]

I take it these are still good guidelines to start this process

Hi Cort,

I thought this list summed it up pretty well ... IMHO though, I think it goes without saying that it's best to get tested for nutritional deficiencies and treat those as well. I'd never have figured out that I needed pregnenolone, testosterone, chromium, E, etc etc without the tests. And that I was too high on Taurine, etc .. There are just too many nutrients to consider to know whether you're too high or too low on something. ... IF you can't afford testing though, his list covers the basics. A healthy diet helps for sure, but some of us can't absorb enough nutrients from our food to reach the levels required to heal. hth ... x


http://forums.wrongdiagnosis.com/showthread.php?t=62327

Re: Active B12 Basics

--------------------------------------------------------------------------------
BASIC VITAMINS AND SUPPLEMENTS
Version 1 - 07/23/09

I have divided up the vitamins and supplements in several categories. When brands are mentioned, they are essential as we have performed effectiveness tests and some brands don't work at all, a few work very well and most are mediocre. We are trying to maximize the probability of healing.

All needed products are available at www.iherb.com at competitive prices about half of local health food store prices and good service. Using the coupon code RED843 will get a person $5 off their first order. This also gives me a $5 credit I use to supply these vitamins to people unable to afford them.

Absolutely critical minimums for basic healing.

Jarrow Formulas 5mg Methyl B12, under upper lip or tongue for at least 45 minutes for best effectiveness http://www.iherb.com/Jarrow-Formulas-Methyl-B-12-5000-mcg-60-Lozenges/117?at=0

Country Life Dibencozide (adenosylb12) 3mg under upper lip or tongue for at least 45 minutes for best effectiveness http://www.iherb.com/Country-Life-Active-B-12-Dibencozide-3000-mcg-60-Lozenges/1637?at=0

Solgar Metafolin 800mcg http://www.iherb.com/Solgar-Folate-Metafolin-Folic-Acid-800-mcg-100-Tablets/13961?at=0

Jarrow B-Right b-complex, 1 capsule twice a day http://www.iherb.com/Jarrow-Formulas-B-Right-100-Capsules/110?at=0

Potassium, your choice of brand and form - this is insurance against hypokalemia triggered by sudden healing and potentially fatal - if you have blood tests, potassium is usually checked, midrange, around 4.5 is good. Some people will have problems at bottom of "normal" range, 3.5-4.0.

Omega3 fishoils - essential for myelin sheathing for the nerves, many brands will do, 2-6+ capsules per day, I buy it at Costco, house brand. This is available in many supermarkets.

Essential, usually needs supplementing
Zinc - 50 mg
Calcium/magnesium supplement
D - 3000-5000 IU total
A&D from fish oil, 10,000-(400-800-1000) Vitamin A should be 10,000, D might be any of 3 numbers with additional D to be taken
Vitamin E, Gamma complex http://www.iherb.com/Now-Foods-Gamma-E-Complex-Advanced-120-Softgels/299?at=0
Vitamin C 4000+mg/day

Possibly Critical Cofactors, add after initial stages, any number of these in any combination may be required for maximum effectiveness

SAM-e - 200-400mg/day, makes methylb12 more effective, possibly much more effective, increases energy, improves mood

TMG - enhances SAM-e, methylb12, l-carnitine

L-carnitine fumarate (acetyl might work better for some), works with adenosylb12, lack can completely prevent effectiveness of adenosylb12, increases energy, aerobic endurance, improves mood

Alpha Lipoic Acid - enhances l-carnitine and adenosylb12

D-Ribose - enhances adenosylb12, l-carnitine, alpha lipoic acid, improves exercise recovery and energy

Additional possibly helpful cofactors

Selenium
Lecithin
Chromium GTF
many other supplements


THINGS TO AVOID

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


DEEP NEUROLOGICAL HEALING

The most frequent neurological problems are peripheral neuropathies, often in characteristic stocking-glove distribution. Sublingual methylb12 and adenosylb12 appear quite satisfactory in healing these in a sizable percentage of the time. There exists a class of more severe neurological damage. This is sometimes identified as subacute combined degeneration and takes place in the brain and spinal cord. This can occur in people severely deprived of active b12s by diet or lack of absorbtion by other reasons. Another hypothetical cause may occur in people who for unknown reasons have a depressed Cerebral Spinal Fluid cobalamin level compared to their blood serum levels. In addition there may be mood and personality changes, hallucinations, sensory changes, psychosis and an abundance of neuropsychiatric changes. Some of these changes can be corrected with sublingual active b12s but some require much higher levels of active b12s than are usually achieved with sublingual tablets. In these situations usually only injections will help.

B12 INJECTIONS
The usual kinds of b12 injections, cyanocobalamin and hydroxycobalamin, are virtually always ineffective on any schedule. The once a month schedule for cyanob12 and the once each three months schedule for hydroxyb12 is useless as well. Daily sublingual active b12s are far superior to these in every way. These occasional injections were developed as a means to prevent people with pernicious anemia from dying. They do not promote neurological healing in any significant way. In order to promote neurological healing methylb12 injections of larger than usual size and greater than usual frequency must be used. My own experience is given below and corresponds with the ZONES defined on another posting. All injections are subcutaneous as that produces a slower diffusion into the blood maintaining a steadier serum peak.
1. Single or multiple injections per day to 5mg methylb12, each injection. ZONE 2, fully equivalent to sublingual tablets, did not stop continued neurological deterioration and progressive numbing of feet of 15 years duration.
2. Single 7.5mg methylb12 injection per day stopped the progressive numbing of feet of 15 years duration. ZONE 3A1
3. Two 7.5mg methylb12 injections per day caused some small reversal of numbing of feet and of neuropsychiatric symptoms. ZONE 3A1
4. Four 7.5mg methylb12 injections per day have caused substantial sustained reversal of numbing in feet and of neuropsychiatric symptoms. ZONE 3A2

 

[Cloud]

If this is referring to ME/CFS and not just a B12 deficiency, I would have to respectfully disagree that Hydroxycobalamin is "virtually always ineffective". It's one of the most effective (short and long term) things I have ever taken. Methyl B12 makes me sick. What little I do know about methylation treatment, this protocol is good....I just disagree on the B12.

 

[cfsbear]

New B12 blood test: Active-B12 (holoTC)

This is my first post and I have not had time to read the entire thread in reverse yet so I don't know if the new B12 test has been discussed.

There is a new B12 test that was created by Axis Shield in the EU and licensed to Abbott Labs who has incorporated it into their latest test equipment. Quest Diagnostics offers it and probably a bunch of other big reference labs. The link for Quest is: http://www.questdiagnostics.com/hcp/testmenu/jsp/showTestMenu.jsp?fn=14931.html&labCode=AMD

This new Active B12 test distinguishes between the biologically active B12 (holotranscobalamin) and the inactive B12 (holohaptocorrin). We know that normally only around 20% of circulating B12 is in the activeform and that the levels of this form change much quicker than the inactive form

NOTE: I think the term "Active" here means "transcobalamin bound to B12" and not mB12 or aB12.

This test looks at whether the B12 transport protein is carrying B12. I am not sure but suspect it is not sensitive to mB12 or aB12 from sublinguals or injections. I have not had time to carefully study this but it seems like a significant advance over the older tests for people who have not be supplementing directly into the bloodstream. Freddd probably is far ahead of me.

 

[cfsbear]

Ratio of methyl-B12, adenosyl-B12 and methyl-folate in large daily doses

Hi Freddd,

My wife has the neurological disease Cerebellar Ataxia but also has some B12 deficiency symptoms in her feet. She may have trouble absorbing ingested B12 because of previous H2 blocker drugs and potential Celiac intestinal absorption problems.

We have been following your protocol seriously for about a month with Active-B12 very moderate effects in her feet. Previously she was taking a combined mB12 & AaB12 sublingual and a single l-methylfolate supplement for 6 months. So far there do not seem to have been any significant startup effects.

We have been increasing the amount of mB12,aB12 and mFolate above 25 mg and looking to go to 50mg single doses once or twice a day. If she is taking 50mg of mB12 once or twice a day, how much mFolate should she be taking and should it be at the same time? Also if she goes to 50mg single doses of aB12 how often should she do that? In other words should we try to do a 50mg dose of mB12 in the morning and a 50mg dose of aB12 in the evening or two 50mg doses of mB12 a day and throw in a 50mg dose of aB12 once a week or so?

We are trying to use this as a diagnostic to see if she will get some CNS response and if so, we will then get a doc to prescribe mB12 (and aB12 if available) injections. We can probably also get a prescription for Deplin if that is a suitable form of methyl folate.

P.S. I realize the only way to get a CNS measurement of B12 is with a spinal tap. Is this something a regular doctor can order from a typical reference lab (a B12 level on CSF) or is it just done in research labs? Of course the new test would probably not work at all.

 

[LaurieL]

Freddd,

I also have similar questions. I posted for the first time last week and have yet to get a response from anyone. I am also up to 30 mg of adeno and methyl B12 as per recommended on your protocol. I added the methyl folate three days ago after three weeks of the active B's. I started at one dose and am now up to two doses per day or 1600 mgs.

Questions #1: Would it be wiser to cut the doses of methylfolate or the caplets in half and take more often, meaning smaller doses over longer period, or the entire caplet (800mg) twice a day like I have been doing.

I have had start up symptoms but nothing pronounced until yesterday. Nausea and headache, or better said, left eye cluster migraine. The kind where it feels like someone is pulling on the back of your eyeball and it will come out of the top of your head. Also, one side of my neck, the right, is tight and constantly feels like I slept on it wrong.

I chose Freddds protocol due to the pragmatic approach as testing is something I cannot do financially. It also offered me a chance to pragmatically test functional Vitamin B12 deficiency or a folate problem.

During the intial implementation of this protocol one of the things I have experienced are what I thought were hot flashes. But those have now progressed to an near constant low grade fever, and when not present, I again experience the freezing, I can't warm up, sub-normal temps I have had for years. I have yet to see this brought up in this thread.

Question #2: Have you experienced this or heard of this? Because of the near constant occurence at thi point, I am beginning to question infection somewhere.

Nearly one week into your protocol, I also experienced the occurence of a rash/acne of which is still not gone at this time. Some of it has healed and some of it has not. Prior to developing this, I experienced extreme itching of which has not occured since the appearance of this rash.

Question #3: Is this rash due to taking the inactive B12's before implementing your protocol, or is this the rare occurence, of which I have found in previous passages by you, occuring in 1% in those using this protocol? I have thus far been able to determine through previous posts, that this may be due to the breakdown of one of the active B's. I believe you mentioned the methyl B. I would really like some more information on that 1% that experienced this rash type acne. This is not acne, I am questioning a detox reaction very heavily.

Anybody out there?

Laurie

 

[richvank]

This is my first post and I have not had time to read the entire thread in reverse yet so I don't know if the new B12 test has been discussed.

There is a new B12 test that was created by Axis Shield in the EU and licensed to Abbott Labs who has incorporated it into their latest test equipment. Quest Diagnostics offers it and probably a bunch of other big reference labs. The link for Quest is: http://www.questdiagnostics.com/hcp/testmenu/jsp/showTestMenu.jsp?fn=14931.html&labCode=AMD

“This new Active B12 test distinguishes between the biologically active B12 (holotranscobalamin) and the inactive B12 (holohaptocorrin). We know that normally only around 20% of circulating B12 is in the activeform and that the levels of this form change much quicker than the inactive form”

NOTE: I think the term "Active" here means "transcobalamin bound to B12" and not mB12 or aB12.

This test looks at whether the B12 transport protein is carrying B12. I am not sure but suspect it is not sensitive to mB12 or aB12 from sublinguals or injections. I have not had time to carefully study this but it seems like a significant advance over the older tests for people who have not be supplementing directly into the bloodstream. Freddd probably is far ahead of me.

Hi, cfsbear.

Thanks for posting this. I'm happy to hear that Quest is now offering the holotranscobalamin test. If a person takes this test as well as a urine methylmalonic acid and FIGlu test (such as in the Genova Diagnostics metabolic analysis profile, available either through a physician or from www.directlabs.com without a physician's order), this combination of results will indicate where the B12 problem lies. if present. If the holotranscobalamin test gives a low result, that will suggest that the B12 problem is upstream of that point. That is, the person has a low intake of B12, or is not able to absorb it well from food because of pernicious anemia or a gut problem, or they have a genetic transcobalamin deficiency, or some other problem upstream of this point. This would constitute a true B12 deficiency condition.

On the other hand, if the holotranscobalamin test gives a normal result, but the methylmalonic acid and FIGlu are high, that would suggest that there is a functional B12 problem in the cells themselves. This could be due to hijacking of the B12 by toxins as a result of insufficient glutathione to protect it (as proposed in the GD-MCB hypothesis for the pathogenesis of CFS) or due to an inborn error of metabolism involving the intracellular B12 processing enzymes, such as freddd has reported having.

I think this will be a very helpful test.

Best regards,

Rich

 

[richvank]

Freddd,

I also have similar questions. I posted for the first time last week and have yet to get a response from anyone. I am also up to 30 mg of adeno and methyl B12 as per recommended on your protocol. I added the methyl folate three days ago after three weeks of the active B's. I started at one dose and am now up to two doses per day or 1600 mgs.

Questions #1: Would it be wiser to cut the doses of methylfolate or the caplets in half and take more often, meaning smaller doses over longer period, or the entire caplet (800mg) twice a day like I have been doing.

I have had start up symptoms but nothing pronounced until yesterday. Nausea and headache, or better said, left eye cluster migraine. The kind where it feels like someone is pulling on the back of your eyeball and it will come out of the top of your head. Also, one side of my neck, the right, is tight and constantly feels like I slept on it wrong.

I chose Freddds protocol due to the pragmatic approach as testing is something I cannot do financially. It also offered me a chance to pragmatically test functional Vitamin B12 deficiency or a folate problem.

During the intial implementation of this protocol one of the things I have experienced are what I thought were hot flashes. But those have now progressed to an near constant low grade fever, and when not present, I again experience the freezing, I can't warm up, sub-normal temps I have had for years. I have yet to see this brought up in this thread.

Question #2: Have you experienced this or heard of this? Because of the near constant occurence at thi point, I am beginning to question infection somewhere.

Nearly one week into your protocol, I also experienced the occurence of a rash/acne of which is still not gone at this time. Some of it has healed and some of it has not. Prior to developing this, I experienced extreme itching of which has not occured since the appearance of this rash.

Question #3: Is this rash due to taking the inactive B12's before implementing your protocol, or is this the rare occurence, of which I have found in previous passages by you, occuring in 1% in those using this protocol? I have thus far been able to determine through previous posts, that this may be due to the breakdown of one of the active B's. I believe you mentioned the methyl B. I would really like some more information on that 1% that experienced this rash type acne. This is not acne, I am questioning a detox reaction very heavily.

Anybody out there?

Laurie

Hi, Laurie.

As you may know, I have a somewhat different treatment approach from freddd's, so I won't comment on your protocol question, but will leave that to him.

With regard to the symptoms you are experiencing, experience with the simplified methylation protocol, which also lifts the partial methylation cycle block, is that people have experienced a wide variety of symptoms. My view is that these are due to mobilization of toxins and die-off of pathogens, as restoring the methylation cycle and glutathione will reactivate the detoxication system and the immune system in the body, both of which have been suppressed during the duration of the illness. If you would like to see the list of symptoms others have reported, you can go to www.cfsresearch.org and click on CFS/M.E and then on my name. The article dated July 18, 2007 discusses this at the end.

Best regards,

Rich

 

[LaurieL]

Hi, Laurie.

As you may know, I have a somewhat different treatment approach from freddd's, so I won't comment on your protocol question, but will leave that to him.

With regard to the symptoms you are experiencing, experience with the simplified methylation protocol, which also lifts the partial methylation cycle block, is that people have experienced a wide variety of symptoms. My view is that these are due to mobilization of toxins and die-off of pathogens, as restoring the methylation cycle and glutathione will reactivate the detoxication system and the immune system in the body, both of which have been suppressed during the duration of the illness. If you would like to see the list of symptoms others have reported, you can go to www.cfsresearch.org and click on CFS/M.E and then on my name. The article dated July 18, 2007 discusses this at the end.

Best regards,

Rich

Thank you Rich for your reply. I had read some of your protocol as well. I did go to the link you gave, and yes, I have experienced 17 of the 22 symptoms listed, the other five I have never experienced at all. I am not panicked by the symptoms, just curious, and looking for a connection. I also believe this is a detox reaction.

I have chosen to start with Freddds protocol, and then had planned on incorporating some of your principles and recommendations concerning the folates, like I mentioned earlier, pragmatic is my only option.

I have so much more to learn about all this, any guidance is appreciated.

I am wondering, I have been on a lot of the supplementals recommended in either of your protocols. I seem to have not had as much trouble with the start up as others here have. Yes, I have had start up but nothing severe or adverse and the benefits thus far, have far outweighed the detox reactions. I have to verbalize in spite of the start up I have experienced, if this is actually my problem, despite similar experiences? I am obviously reacting and responding. I only have about four years of this under my belt though as compared to others in which have decades.

Will keep on keeping on.

Laurie

 

[LaurieL]

Okay something else I have been experiencing. My question is concerning methylation and hormones. I went through a period in which I was having hot flashes, but now those have leveled out in to a low grade fever. But also weird is that I failed to have my menses last month. And the roots of my hair that has grown while doing these particular protocol recommendations are now growing in grey. I mean grey. Is this coincidental, I am 43 and nearing the "time" but I have never had this all happen. Am I missing a critical precursor?

Laurie