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B-12 - The Hidden Story

C

Cynthia

Guest
Hi Fredd,
I finally found your post and the one I replied to! Whew, I think I'm getting it.
Anyway, my bottle says....cyanocobalamin...1000 mcg/ml. 30 ml. My needles are big, and long, so I've been told. I do go into the muscle. I use a 3 ml 22G1 needle. I do 2 ml each time. And, I do have numbness, and it has spread from the top of both of my legs, starting on the left leg, to the left lower side of it. I have also started to go numb in my hips..both sides...normal things to have happen I've read, with MS. Thank you for replying..I will be looking into this. Reverse it?? That would be great!! You do this daily? I only do it once every few weeks. I do believe that the extra B12 has helped me with my iron though. I've had that problem way before I knew I had FM and MS. Who knows, maybe these problems are why I have iron problems.? Thanks again...
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Hi Fredd, I am new here and very curious about the B12 treatment that gave you such a good recovery. I am a 60 year old female and first got ill in 2001. It was more CFS than FMS. I tried every treatment I could find and only until I did the Atlas Profilax did I start to recover. That was about 3 years ago and it took about 18 months to be 90% well. Something is still wrong, I can't exercise much. I tried weight training and within 1 hour I was exhausted. I tried pilates on a reformer and within 1 hour I was exhausted and it lasted sometimes 3 days. What caught my attention was the symptom of "sore tongue". My tongue has been so sore, like it has been burned and my tongue is swollen. Do you think this treatment could work for me? Should it be started with the Country Life Dibencozide. I have been on the wrong B12 you talked about. I am not excited about getting worse before getting better. I don't have a Dr. who can help. I am not as ill as I was 8 years ago but I am not well. I am married to a dentist and I have had lots of mercury fillings in my mouth, he took them all out. Had a hair analysis and the mercury was off the charts. My husband never uses mercury fillings but he does remove them from his patients and he probably had mercury in all the shirts that I have been washing for years. Thank you for all you are doing.

Lena



Hi Lena,

http://forums.aboutmecfs.org/showthread.php?p=3042#post3042

The above thread is on methylation and is discussing the mercury issue. Rich posted some information and questions about mercury and the effects of methylb12 on mercury and I have posted some replies. Rich has not yet gotten back with additional information he was going to look for. So I have to say, some aspects of this mercury thing are an open issue without a consensus. In addition to the insurance backround I have I also was secutries licensed and there was an ethical statement concerning "full and fair disclosure" which I very much agreed with and have carried over to this. In complying with that I've been called verbose, which may be accurate, depending upon one's definition. In any case please read that before continuing here because I'm going to be assuming you did.

My father was a dentist. He came home contaminated with mercury I'm sure. I had a small bottle of mercury (in water) that I could show my friends and such. He also demonstrated the effects on coins. I had amalgams, all but one of which have been replaced as they aged. I did a model based on the information I found on excretion of methylmercury, elemental mercury after it has been methylated by methylb12. Unless I have a serious misunderstanding of the amount of mercury a given amount of methylb12 can methylate, the capacity of mercury to disable methylb12 is probably of more concern to me than the small amount of mercury actually methylated by methylb12. This appears to be well within the range of what can be excreted in the bile even if there is 100% efficiency in disabling methylb12. I feel that 10% is more likely in the ballpark than 100% and the model indicates that the amount of methylmercury in the body at any given time is minimal. I am awaiting comment on it from Rich and anybody else.

As I likely had as much or more mercury from dental and dentist exposure than most people and had no specific thing I can attribute to conversion by methylb12 except that I was severely deficient of methylb12 for years I wouldn't expect normal amount of methylb12 to cause any methylmercury problems.

I tried every treatment I could find and only until I did the Atlas Profilax did I start to recover.

I had terrible neck pain and problems for decades. The methylb12 deficiency caused tight muscles twisting my neck into a reverse curvature characteristic of ME. I had horrid neck pain. I also had some traumatic injuries and disk damage, but not severe enough to warrent surgery.

My neck muscles along with all the muscles of my body have pretty much normalized now. As I had multiple problems, it took both b12s to repair the damages and heal my muscles and return normal exercise capacity. I'm 61 currently and aside from a few old injuries, some knee, hip, back and elbow problems NOT caused by b12 deficiencies I'm in good shape.

So let's look at what you might want to try. Understand that having either inactive b12 prior to trying the active, has increased the reactions to the active b12s. In my experiences, people without any b12 deficiencies have no reaction. That includes people without applicable symptoms and people who have reached saturated equilibrium on both b12s. There are 4 separate b12 deficiencies that we can detect pragmatically; two in the cerebral spinal fluid and two in the body. Each form of b12, adb12 and mb12 each has it's own sets of symptoms and a person can have any combination of the 4 as well as methylfolate deficiencies.

In reading of all the intense reactions people have with starting methylators and inactive b12s, I would suggest a different order of startup than I have up to now.

The next post will be an attempt at a schedule that minimizes startup effects.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Active b12s startup for people with big reactions

ACTIVE B12S STARTUP FOR PEOPLE WITH BIG REACTIONS
Version 1.0 08/28/09

Up until now I have been focused mainly on people being able to tell if lack of b12 was the problem. There was a 5 item test protocol to detect that. It was not designed for a gentle startup. Just the opposite, it was meant to provoke maximum response quickly in as many people as possible so that they would know what the problem was. Generally those who had an overwhelming response had to experiment to try to find a way for minimizing these reactions. Having encountered a number of people recently who have had extreme reactions from starting up active b12s, which while it does indicate a severe shortage of those active b12s as there is nothing at all to indicate that they are not severely deficient in certain functional and possibly fundamental ways. Functional deficiencies are things that can change almost immediately; increases in neural transmitters, nerve speed, energy generation, some sensory things and a limited increase in methylation capacity. If taken with methylators such as SAM-e and methylfolate it can be like starting the engine with the accelerator floored and keeping it there. People who have been taking at least cyanob12 without methylators appear to become very deficient in methylation capacity. As we perceive percentage differences, even a small increase is perceived as huge. If we increase from 0.1% to 1%, that is a tenfold increase and is perceived as a huge increase, much larger than going from 1% to 2%. Doublings are only 3 just noticeable differences. Going up 10x is more than 3 doublings. Going from 50% to 100% is only one doubling and is not perceived as very much. As we increase our level of various things the amount of relative differences falls off.

With all that in mind then this is a first attempt at a reaction minimizing approach. It may not be suitable for everybody and is experimental in nature attempting the solution of this problem.


1. Discontinue SAM-e, methylfolate, TMG, L-carnitine, for 2 weeks in an attempt to cool down the methylation and enhancement of mitochondrial function. Also discontinue any glutathione and/or glutathione promoting precursors including un-denatured whey, glutamine, NAC, etc


2. Discontinue hydroxyb12 and/or cyanob12.


3. At the same time start taking Jarrow B-Right which includes a minimal amount of mb12, a&d, e, c, omega3 oils, calcium, magnesium, POTASSIUM and other basic supplements that are methylation and mitochondria neutral.


4. After one to two weeks off of the mitochondrial enhancers start Country Life Dibencozide (adenosylb12) retaining for 45 minutes or longer under upper lip. Adenosylb12 may cause an energized feeling. That is normal. When your mitochondria increase from 1% active to 10% or 20% or 50% you will notice a difference. It may seem jittery at first, the farther down you have been the more intense it will feel. It will feel normal after a while, days weeks or months. It may feel comfortable long before it feels normal. This is what becomes “normal” energy. Many miss it after it has begun feeling normal. With 1- 3 adb12 tablets the first day there will usually be no perceptible change after that from a daily tablet. Adb12 is not involved with methylation cycles or anything else. It only causes the mitochondria to work normally, nothing else.


5. After becoming comfortable with the change from the adb12, one can add the methylb12. Two weeks gets those other methylators mostly out of the system. If they were not being taken, it can be the next day or week or whenever you are comfortable with the adenosylb12. These things cause change. The ONLY things b12 does are the functional things it can do. It’s not like a drug that forces a reaction. It allows the body to function towards normal. Look at it this way. Let’s say, for the sake of a number, that there are 1000 units of startup functioning to get out of the way; no way to avoid that. If you start up 1 or 2 units a day it can take years. If you start up hundreds each day there is more intensity more quickly. It goes to 100%, no farther. It’s the same problem; going from 0.1% to 1% is as large a change as going from 1% to 10% or 10% to 100% as perceived intensity appears to be based on percentage of change over previous. No change produces no intensity. Change below a certain level, a Just Noticeable Difference can’t be perceived even if it occurs. If you are apprehensive about a large change, start with a crumb (really, just a crumb, 1/16 of a tablet for instance) of a 1mg tablet (Jarrow or Enzymatic therapy) under your upper lip for 45 minutes or longer or until gone. If you are going to feel it in any perceptible way you will by the time it fully dissolves and is gone. Intensity stops increasing by the time it is gone. Keep repeating all day as comfortable. After a few days of crumbs, you can move up to 1/8 tablet, then ¼ and then ½ and finally a whole tablet. Same method with each size. Equilibrium will keep increasing with each dose increase up to perhaps 25mg/day with 5mg Jarrow tablets. That produces the maximum healing one can expect from sublinguals and is equivalent to 2 times 2.5mg SC mb12 injections per day approximately. Maintain 1 adb12 daily during all this. Most people find 1 or 2 5mg tablets daily satisfactory for maintaining healing. After that more cofactors will make a larger difference and the right balance has to be found. Some people find taking 25mg the first day and next few days gets the startup over with quickly. Most don’t find 25mg any more intense than 2mg. It fills up the need faster and so there is less and less difference each day very rapidly.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Hi Fredd,
I finally found your post and the one I replied to! Whew, I think I'm getting it.
Anyway, my bottle says....cyanocobalamin...1000 mcg/ml. 30 ml. My needles are big, and long, so I've been told. I do go into the muscle. I use a 3 ml 22G1 needle. I do 2 ml each time. And, I do have numbness, and it has spread from the top of both of my legs, starting on the left leg, to the left lower side of it. I have also started to go numb in my hips..both sides...normal things to have happen I've read, with MS. Thank you for replying..I will be looking into this. Reverse it?? That would be great!! You do this daily? I only do it once every few weeks. I do believe that the extra B12 has helped me with my iron though. I've had that problem way before I knew I had FM and MS. Who knows, maybe these problems are why I have iron problems.? Thanks again...


Hi Cynthia,

Anyway, my bottle says....cyanocobalamin...1000 mcg/ml. 30 ml. My needles are big, and long, so I've been told. I do go into the muscle. I use a 3 ml 22G1 needle. I do 2 ml each time. And, I do have numbness, and it has spread from the top of both of my legs, starting on the left leg, to the left lower side of it. I have also started to go numb in my hips..both sides...normal things to have happen I've read, with MS.

Methylcobalamin is 1000 to 10000 times more potent and effective than cyanocobalamin. A 31 gauge 5/16" needle is far more comfortable to inject as a subcutaneous and it works better for the purpose of healing than IM. My solution is 20mg/ml concentration methylb12.

As to whether the methylb12 can reverse the numbness with the right cofactors for you or not I don't know. I know that it has for me and many others including getting two people I know of directly up out of wheelchairs and I was headed in that direction.

Iron is an unrelated problem as far as I know.

Having experimented with various size injections I and my doc have found what WORKS. That is either 4 x 7.5mg SC injections per day or 3x 10mg SC injections of methylb12 per day. A 5mg injection worked no better than sublingual. 7.5 mg put it up into the enhanced neural healing mode found in Japanese research into ALS amd MS. I found that 1 7.5mg injection per day stopped further deterioration but didn't reverse it. 30mg/day in 3 or 4 injections reversed it and gave me feeling and motor control back of my feet, legs and toes. I would be interested in hearing how it works out for you if your doc is willing to try. My daugter is just starting injection trials today because our doctor observed how well it worked for me.
 

winston

Senior Member
Messages
102
Location
Central California
B12

Hi Fredd, thank you for replying so fast. I ordered Jarrow B-Right, Country Life Dibencoside, Jarrow Methyl and Solgar Metafolin. Let me see if I understood how to start up on these. I have discontinued my cyanob12, there was nothing else on your list that I was taking. Start taking Jarrow B-Right. After two weeks start Country Life Dibencozide. After comfortable start with Jarrow Methyl B12, I am apprehensive about all of this so this one I can start with crumbs. I did not see on your list to take Solgar Metafolin. Right now I can feel my amygdala getting very involved. Was doing so good for about 18 months and now my 90% functioning is disappearing. I have stopped all exercise except I still walk 30 minutes 3 or 4 times a week. So scared to go back to that very sick place. I am lucky that the pain has not come back. In the past I have done many treatments where for months you were really sick, I am hoping this will not be the case with these supplements. Fredd, I can go on and on, it's just there is no place to go for help, for me this is it. No doctor has helped, no alternatives, no holistic, no acupuncture, no supplements, I feel pretty alone. Thanks for helping and listening.

Lena
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Hi Fredd, thank you for replying so fast. I ordered Jarrow B-Right, Country Life Dibencoside, Jarrow Methyl and Solgar Metafolin. Let me see if I understood how to start up on these. I have discontinued my cyanob12, there was nothing else on your list that I was taking. Start taking Jarrow B-Right. After two weeks start Country Life Dibencozide. After comfortable start with Jarrow Methyl B12, I am apprehensive about all of this so this one I can start with crumbs. I did not see on your list to take Solgar Metafolin. Right now I can feel my amygdala getting very involved. Was doing so good for about 18 months and now my 90% functioning is disappearing. I have stopped all exercise except I still walk 30 minutes 3 or 4 times a week. So scared to go back to that very sick place. I am lucky that the pain has not come back. In the past I have done many treatments where for months you were really sick, I am hoping this will not be the case with these supplements. Fredd, I can go on and on, it's just there is no place to go for help, for me this is it. No doctor has helped, no alternatives, no holistic, no acupuncture, no supplements, I feel pretty alone. Thanks for helping and listening.

Lena

Hi Lena,

The purpose of that specification was for people who are fearful of a huge startup. Elsewhere a lot of people are starting up with metafolin, mb12, adb12 b-right and potassium all right off the bat. However, it is people who have been talking cyanob12 or hydroxyb12 and a methylator that tend to have a real intense startup. I was just taking cyanob12 but it was still all but overwehelming. I wondered for a long time why most people didn't have that kind of startup. I really see nothing wrong with accelerating the startup as long as the person doing so is reasonably comfortable doing so. If you start the B-right, one capsule twice a day, you will get a small amount of mb12. If it isn't too uncomfortable, you can start the adb12 almost immediately. That starts up the mitochondria, or at least supplies one of the ingrediants. Metafolin is another. I am trying to provide a method for those most likely to have a sock knocking startup to do so somewhat more gently. As soon as the Adb12 is comfortable, it's fine to start crumbs of mb12. The two weeks is more of an outside limit than anything absolute. As I mention this is an experimental method put together from more gentle startups by looking at people who have incidently done it this way but without dragging it out too long. Metafolin is critical for prpoer utilization of both b12s so it shouldn't be delayed any longer than needed. The thing about starting with crumbs is that way you can control how intense the reactions can get. I started feeling so much better within an hour of starting mb12 that despite the intensity and the hyperawareness of all the other symptoms there was no way I would go back. A lot of this depends upon you. Either the adb12 or the mb12 can cause some degree of energizing, in fact can't help but do it. They may disturb sleep for a few days before setting down into better quality sleep. Metafolin as well. The trick is not to turn it into a panic or anxiety attack. Expect it and don't worry when it happens. There is no way not to experience startup effects when these things start all those stalled processes working. Don't expect a velvet smooth ride. It's a washboard road. On the mb12 once you hit maximum intensity, you can load more in quickly and just reach equilibrium faster without more intensity. I also have experienced many people saying "What's wrong, I no longer feel any effects from an mb12 tablet. Has it stopped working?". The answer is that it is still working but is entering a dfferent phase in which the serum and tissue level stays within the same range every day and isn't increasing. We feel the increase, not sameness. Good luck and good health. You can post your experiences and questions and I'll try to respond within a day or so.
 

Frank

Senior Member
Messages
850
Location
Europe
Freddd is there any possibility that you can put your protocol in some easy "digestible" form. Like maybe a visual scheme or something very practical. If i find the time and energy i would be willing to make such a scheme and maybe then you can approve afterwards.
Maybe some people over here can try it out and we can evaluate it.

Frank
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Hi Fredd, thank you for replying so fast. I ordered Jarrow B-Right, Country Life Dibencoside, Jarrow Methyl and Solgar Metafolin. Let me see if I understood how to start up on these. I have discontinued my cyanob12, there was nothing else on your list that I was taking. Start taking Jarrow B-Right. After two weeks start Country Life Dibencozide. After comfortable start with Jarrow Methyl B12, I am apprehensive about all of this so this one I can start with crumbs. I did not see on your list to take Solgar Metafolin. Right now I can feel my amygdala getting very involved. Was doing so good for about 18 months and now my 90% functioning is disappearing. I have stopped all exercise except I still walk 30 minutes 3 or 4 times a week. So scared to go back to that very sick place. I am lucky that the pain has not come back. In the past I have done many treatments where for months you were really sick, I am hoping this will not be the case with these supplements. Fredd, I can go on and on, it's just there is no place to go for help, for me this is it. No doctor has helped, no alternatives, no holistic, no acupuncture, no supplements, I feel pretty alone. Thanks for helping and listening.

Lena


Hi Lena,


This post isn't about b12 as such. It's more about other things. I just want to add, after you are comfortable on 5mg or more a day of mb12 then add the Solgar Metafolin. I assumed that we would continue talking and that you would go into phase 2, adding Metafolin and other things. I am unsure about whether to add the SAM-e or the Metafolin first. If you add the SAM-e first, Metafolin will make very little startup additional effects usually. However, Metafolin can be critical so let's talk about it based on your reactions to the first part and you can decide then how to do it. This is really about custom fitting it to you.

I can go on and on, it's just there is no place to go for help, for me this is it. No doctor has helped, no alternatives, no holistic, no acupuncture, no supplements, I feel pretty alone.

Boy do I know that place. I was told for years that whatever ideas I had about "real b12" compared to cyanocobalamin were wrong. Nothing else was availalble except liver and I tried 100 tablets of dessicated liver a day. It helped almost imperceptively and only unitl I had an increase in pain (car wreck) or got sick. It didn't improve my health but it did alow the lights to come on for a few weeks or months on several occasions over several years for the first time in my life. Knowing what I do now I should have moved that up to 400 tablets a day. It might have changed my life, given me the 20 years I lost. I puzzled over 100 practitioners, mostly MDs but not all.

All those various practitioners you have puzzled haven't helped because the theoretical basis on which they are basing their treatments, and I say this purely pragmatically, don't apply to you for some reason. If in fact it is because you lack the active b12s that you need, nothing else can possibly substitute for them. I irritated a lot of practitioners by telling them that what they were doing just plain wasn't working. Sure, I had day to day fluctuations but they never affected those to fluctuate in a progressively better direction. People with active b12 deficiencies tend to leave a string of puzzled practitioners in their wake. The practitioners and others also present all sorts of wild theories as probably applying to them. If active b12s can help you they won't keep it a secret. This whole business is about slowing down the responses so as not to have them be too intense all at once. I would say it appears to have a reasonably good chance of helping you. And it won't take forever to know. If you have no reactions at all to any of this then there is something missing and we can continue along that direction. Usually it helps some things and expands from there as other cofactors are added. As you start up any reaction at all indicates that you needed the vitmain and various processes are starting up. So get started and hang in there.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Freddd is there any possibility that you can put your protocol in some easy "digestible" form. Like maybe a visual scheme or something very practical. If i find the time and energy i would be willing to make such a scheme and maybe then you can approve afterwards.
Maybe some people over here can try it out and we can evaluate it.

Frank


Hi Frank,

I'm not sure I understand what you mean. Please explain it a bit better. I have no idea how it would be put into a visual form for instance. This isn't an answer, it's a request for more information.
 
Messages
34
Location
chicago
bad reaction to SAME

Fredd,


Thanks for all the information you have given. You have done an amazing amount of research and I'm sure have spent onerous amounts of time getting answers. When I was diagnosed with fibromyalgia in 1990 I did the same thing, even writing a book which is still selling and lecturing to support groups and professional groups. I persevered and overcame fibro only to end up with CFIDS!

I was on the Jarrow sublingual for about a month when I read your post( I had just accidently picked it off the shelves, as my doctor told me to take sublingual B-12 -- but didn;t tell me to take it as you suggest. I just scarfed it down. -- I don't know where my bad reaction came from because I had also started Cholestyramine for toxin removal about the same time. . I seem to have gotten over the hump and have added the adensylb and the folate you mentioned. When I try to add SAME I feel absolutely awful. Pretty irritable too. Any ideas? Do i need to take it, as I am feeling better without it. I am not up to snuff on the science behind the protocal as I destroyed all scientific cylinders in my brain working on Fibromyalgia for 15 years for myself and others. Probably why I got this illness. -- used up all my batteries for my battle with fibro!

Never give up!

Peace and light to you

Rosebud
 

winston

Senior Member
Messages
102
Location
Central California
B12

Hi Fredd, could you check my supplement list to see what I should add and what I should take off:

Citracal Calcium
Magnesium Malate
i Flora probiotics
Cenrum Silver
Vit D-1000
Udos 3-6-9 Omega Fatty Acids
Mangosteen juice

Should I add Vit E (Gamma E Complex NOW Foods)
also add C

Thank you.

Lena
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Fredd,


Thanks for all the information you have given. You have done an amazing amount of research and I'm sure have spent onerous amounts of time getting answers. When I was diagnosed with fibromyalgia in 1990 I did the same thing, even writing a book which is still selling and lecturing to support groups and professional groups. I persevered and overcame fibro only to end up with CFIDS!

I was on the Jarrow sublingual for about a month when I read your post( I had just accidently picked it off the shelves, as my doctor told me to take sublingual B-12 -- but didn;t tell me to take it as you suggest. I just scarfed it down. -- I don't know where my bad reaction came from because I had also started Cholestyramine for toxin removal about the same time. . I seem to have gotten over the hump and have added the adensylb and the folate you mentioned. When I try to add SAME I feel absolutely awful. Pretty irritable too. Any ideas? Do i need to take it, as I am feeling better without it. I am not up to snuff on the science behind the protocal as I destroyed all scientific cylinders in my brain working on Fibromyalgia for 15 years for myself and others. Probably why I got this illness. -- used up all my batteries for my battle with fibro!

Never give up!

Peace and light to you

Rosebud


Hi Rosebud,

I'm betting we can do something about some of those cylinders.

When I try to add SAME I feel absolutely awful. Pretty irritable too. Any ideas

Can you describe in more detail exactly how you felt awful and list all your symptoms that remain. Use the list of symptoms if you need to to help spot them. List them even if you have given up telling your docs.

Remember, the longer you make the mb12 and adb12 last, the more b12 you get into your system. A 5mg Jarrow for 75+ minutes is approximately equivalent to a 1000mcg mb12 injection. You may have some startup symptoms all over again with the increased amount, but it is ok.

As there are 4 different b12 deficiencies and so far you are only starting to address two of them there is a lot of room left to get you all the back. Maybe it will be time to revise your book after you get everything else back functioning. I spent 16 years totally crashed and 39 years leading up to that and so far only 6 years recovering and rehabilitating.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Hi Fredd, could you check my supplement list to see what I should add and what I should take off:

Citracal Calcium
Magnesium Malate
i Flora probiotics
Cenrum Silver
Vit D-1000
Udos 3-6-9 Omega Fatty Acids
Mangosteen juice

Should I add Vit E (Gamma E Complex NOW Foods)
also add C

Thank you.

Lena

Hi Lena,

In the current style I think a higher D would serve you better, 3000-5000 units a day. A fishoil A of 10,000 units. Definitely Vitamin E and my preference is the NOW Gamma E complex. 4000-6000mg or more (I got up to 16 grams a day for about 20 years and it got rid of chronically swolen glands and all that)) of C a day can help with immune function and cell formation. You want to make sure that in your Omega3 oils that you are taking at least 1-2 grams (1000-2000mg) a day of the two active factors, optimum balance between them is unknown and may vary by person. The B-Right b-complex with multiple coenzyme b vitamins and the whole spectrum taken twice a day is noticably superior to any other B-complex I've taken, and I've taken a lot of different ones. The Solgar (or other brand) 800mcg Metafolin is one of the essentials. Both the Country Life Dibencozide and Jarrow 5mg methylb12 are essential. Jarrow, Enzymatic Therapy were the two 5 star b12s and Country Life the 5 star adnosyulb12. These are both essential held in mouth for 45 minutes or more for increased absorbtion. After all these are going and everything has settled in then the process of fine tuning can occur. This assumes you continue the magnesium and calcium and add maybe a multimineral. Probiotics etc are fine but do entirely different things.
 

winston

Senior Member
Messages
102
Location
Central California
B12

Hi Fredd, I received my box of B12 today. Still looking at them. I want to start the JarrowB-Right today but am aprehensive to reactions at this time, I know it is silly but my husband and I are celebrating our 40th anniversary this weekend by driving to San Diego (4 1/2 hours) for the weekend to spend it with my daughter, husband and toddler. My old symptoms are all coming back with a vengence especially anxiety luckily I have some zanax to help me through. Sleep now is 4 hours a night last week it was 7 hours a night. Things are happening fast. What I don't understand is if I was B12 deficient why did I do so well for 18 months. I did not add any B12 only the cyanob12. If I was deficient how can it correct itself? For some reason I trust you. Were you diagnosed with CFS or FMS? I am ordering the Ashok Gupta today hoping it will help with my anxiety. Fredd, please don't abandon me and please say you will hold my hand through this.

Lena
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Hi Fredd, I received my box of B12 today. Still looking at them. I want to start the JarrowB-Right today but am aprehensive to reactions at this time, I know it is silly but my husband and I are celebrating our 40th anniversary this weekend by driving to San Diego (4 1/2 hours) for the weekend to spend it with my daughter, husband and toddler. My old symptoms are all coming back with a vengence especially anxiety luckily I have some zanax to help me through. Sleep now is 4 hours a night last week it was 7 hours a night. Things are happening fast. What I don't understand is if I was B12 deficient why did I do so well for 18 months. I did not add any B12 only the cyanob12. If I was deficient how can it correct itself? For some reason I trust you. Were you diagnosed with CFS or FMS? I am ordering the Ashok Gupta today hoping it will help with my anxiety. Fredd, please don't abandon me and please say you will hold my hand through this.

Lena


Hi Lena,

I did not add any B12 only the cyanob12

Cyanob12 can me methylated by some people enough to act as b12 to a limited extent. It got a reputation as having a placebo effect in the 1950s because it gave some people a burst of energy after the injection that wore off in a day and was never repeatable to the same extent. It was so unrepeatable for most that docs who gave b12 injections for other than extremely low serum levels were considered quacks and threatened with prosecution. I hypothecize that the reason it's effects diminished with reuse is that the person's ability to methylate it became diminished. That can't happen with methylb12 and it's effects don't dissapear.


My old symptoms are all coming back with a vengence

Why? Getting more deficient perhaps.


Here is the deal with the methylb12 and adenosylb12. They will affect your energy and stir the sympotoms up. To a large exgtent our perceptions get turned up so we become aware of all the symptoms more clearly which some find disconcerting. Be careful not to get into an anxiety cycle around perceiving changes. If mb12 had no effect it would cause no changes. It has lots of effect. Expect it. Despite all the effects I had I felt so much better after taking it that I wouldn't have wanted to make it take one day more to start feeling better. Anxiety is on the b12 deficiency list of symptoms. Be aware that it can intensify. I didn't have anxiety so whatever I felt was only increased energy, no anxiety attached. It is a matter of interpretation. I was diagnosed with both CFS and FMS and had the symptoms collections of both. The fatigue started lifting in one hour.

If you start with just the B-right and basics like a&d, minerals, E, C and so on they won't add to your startup effects though depending upon what you are short in may have some minor startup themselves. Don't forget the potassium as it's lack can cause problems. Then try adding adenosylb12. It energizes but without all the neurological effects. Then when that is stable try a crumb at a time of a mb12, and I mean literally a crumb. And as long as you are reasonably comfortable, just slip another crumb under you upper lip each 30-45 minutes. The first few will cause proportionately the most changes. The cumulative effects will be less by the time you finish the first tablet than if you used the whole tablet at the same time. I'll be around to answer questions and do some handholding through this. In tantric practice the effects of mb12, in the form of a meal of meat in a traditionally vegetarianm culture, make it considered the "connection" vitamin. Try connecting with your husband, on this your anniversery weekend. Good luck. Giove him some too. You never know.
 

dmholmes

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Freddd, I don't recall how familiar you are with Rich's simplified 5 protocol. But would you advise against doing both at the same time? I believe the hydroxyB12 in the simplified 5 will conflict. I'm only taking the Holistic Health Neurological Formula at the moment.

Freddd, Rich, anybody, are the two approaches considered to be mutually exclusive? Or will there be some combination of the two eventually?

Thanks,
David
 

Freddd

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Freddd, I don't recall how familiar you are with Rich's simplified 5 protocol. But would you advise against doing both at the same time? I believe the hydroxyB12 in the simplified 5 will conflict. I'm only taking the Holistic Health Neurological Formula at the moment.

Freddd, Rich, anybody, are the two approaches considered to be mutually exclusive? Or will there be some combination of the two eventually?

Thanks,
David

Hi David,

On the methylation thread, http://forums.aboutmecfs.org/showthread.php?p=3042#post3042 Rich and I are in dialog about these things.

One thing to understand is that hydroxyb12 is not active. It MUST be changed by the body to either of the two active forms, adb12 and mb12 to have any effect except simple chemical effects such as detoxing cyanide. The assumption that "everybody can transform hydroxyb12 adequately for healing all b12 deficiency symptoms" is demonstrably false. There are a whole lot of steps involved that limits the transformation to perhaps 10mcg, I've never seen a better figure, but it could be 5 or 20 or 30 or 50 or... However, it never results in a large amount of unbound active b12s. Rich's thinking on that is at least partly explained on the other page I referenced you to.

When a person is taking the two active b12s hydroxyb12 has 2 possiblities; it becomes totally irrelevant as 10mcg hardly compares with 10,000 mcg as to effect or it might actually block the active b12s from some of their receptor sites as there is some research to that effect.

The methylation part of the simplified protocol is where people appear to run into trouble. It uses all the same items as the active b12 protocol, just in a different order! Order is important. The combination of hydroxyb12 leaving a lot of unmet b12 needs and the methylation cycle being really heated up appears to maximize startup effects from the active b12s. So read those other pages.

Or will there be some combination of the two eventually?

As the only difference is the order of startup of some supplements and the use of hydroxyb12 which is totally unneeded when active b12s are taken, I'm not sure what you would mean by "combination".

It is my experience that the active b12 protocol has more rapid and thorough healing for more people which the hydroxyb12 protocol avoids by limiting active b12s to the conversion keyhole amount and elliminating it entirely for about 1/3 of persons. The problems appear to be in the conversion from hydroxyb12 with methylators to active b12s, adding the methylators down the road a bit.

Holistic Health Neurological Formula I cant find a specific product. If it contains glutathione or glutathione precursors I would consider it a problem for going onto the active b12. As it is a methylator complex from descriptions then it would be a problem to continue it while starting active b12s, putting the cart before the horse. It appears better to start from scratch in the change over taking a base of all the standard vitamins and minerals only. adding the active b12 and then fionally adding methylators one at a time.
 

dmholmes

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PHP:
The methylation part of the simplified protocol is where people appear to run into trouble. It uses all the same items as the active b12 protocol, just in a different order! Order is important. The combination of hydroxyb12 leaving a lot of unmet b12 needs and the methylation cycle being really heated up appears to maximize startup effects from the active b12s. So read those other pages.

I've been following the other discussion with great interest. Just trying to figure out if it was as simple as replacing the inactive B12 from the simplified 5 with the active forms.

As the only difference is the order of startup of some supplements and the use of hydroxyb12 which is totally unneeded when active b12s are taken, I'm not sure what you would mean by "combination".

I'll have to go back and do a one-to-one comparison. The obvious difference would be the neurological formula. I'm just trying to get the best of both yours and Rich's ideas.

Holistic Health Neurological Formula I cant find a specific product. If it contains glutathione or glutathione precursors I would consider it a problem for going onto the active b12. As it is a methylator complex from descriptions then it would be a problem to continue it while starting active b12s, putting the cart before the horse. It appears better to start from scratch in the change over taking a base of all the standard vitamins and minerals only. adding the active b12 and then fionally adding methylators one at a time.

The neurological formula ingredients are listed. It has a small amount of cyanoB12 and folic acid. Really small at the simplified 5 dosage of 2 pills a day instead of the 6 used on the label.

I'm also getting glutathione shots once a week, sounds like I shouldn't try the ActiveB12 at the moment.
 

Freddd

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I've been following the other discussion with great interest. Just trying to figure out if it was as simple as replacing the inactive B12 from the simplified 5 with the active forms.



I'll have to go back and do a one-to-one comparison. The obvious difference would be the neurological formula. I'm just trying to get the best of both yours and Rich's ideas.



The neurological formula ingredients are listed. It has a small amount of cyanoB12 and folic acid. Really small at the simplified 5 dosage of 2 pills a day instead of the 6 used on the label.

I'm also getting glutathione shots once a week, sounds like I shouldn't try the ActiveB12 at the moment.


Hi dmholmes,


I'm also getting glutathione shots once a week, sounds like I shouldn't try the ActiveB12 at the moment

You might have significant startup reactions. Or they might be delayed until you come off the glutathione. For those already taking the glutathione who started the active b12s all it did was restrict the active b12s from working. It didn't cause any actual problems only maintained the problems in place that were already there. It caused a problem for people who had been taking active b12s for some while and had substantial recovery. It's that recovery that went down the tubes quickly.

If you read Ricks work, he doesn't reccomend the glutathione either and comes right out and says that.

It might be as simple as replacing the inactive with active forms. I originally though that it would be except that people had much more extreme startup reactions. Also, I would suggest adding potassium as rapid healing which is often induced by the active b12s can cause hypokalemia within 3 days. I experienced that 3 separate times with starting a separate item each time.

I also place more emphasis on all the basics like a,d,e,c.,cal,mag, zinc, omega3 being in place so that the healing can happen.
 

dmholmes

Senior Member
Messages
350
Location
Houston
If you read Ricks work, he doesn't reccomend the glutathione either and comes right out and says that.

Rich's simplified 5 article used to say glutathione might be useful, haven't heard him comment on it recently. I'm guessing you are correct, but my CFS docs standard is to test glutathione, inject weekly for 6 weeks and then test again. I can stop it if necessary, but is 2 weeks enough time to stop before starting ActiveB12? Note that I'm also waiting on the methylation panel results from Vitamin Diagnostics.

It might be as simple as replacing the inactive with active forms. I originally though that it would be except that people had much more extreme startup reactions. Also, I would suggest adding potassium as rapid healing which is often induced by the active b12s can cause hypokalemia within 3 days. I experienced that 3 separate times with starting a separate item each time.

The neurological formula has 5mg of potassium. So I'd be getting 1/3 of that when I'm up to 2 tables a day. Is that enough? If not I have another potassium supplement.

I also place more emphasis on all the basics like a,d,e,c.,cal,mag, zinc, omega3 being in place so that the healing can happen.

I'm getting 5000 IU of A, 1000 IU of D separately. And then a little of the others (except omega3) in the neurological formula.