B-12 - The Hidden Story

SaraM

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My thanks to Rich and Freddd

The same here.I just feel a little jittery on MethylB12 and wish it could help me with my muscle pain,too.
 

winston

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B12

Hi Fredd, thank you again, I started taking my supplements during my meal instead of after my meal and I also divided them into 1/2 during breakfast and 1/2 during dinner and the nausea is gone. I really thought it was the mb12 that was making me sick. Went through start-up again with the mb12. It was 5 days after starting back on the mb12 and it hit me, felt like a cat in a cage, pacing for hours, couldn't sit, couldn't read, couldn't watch TV so I just kept moving. By the time I went to bed it was better. Back on the B-right with no problems and this morning added 1/2 of the adb12. The mb12 I take 1/2 morning and 1/2 after lunch. Will wait and see what happens before increasing anything. Thank you so much Fredd, you have been the best support.

Lena
 

Sunday

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Rich, very interesting about the Deplin, I hadn't heard about that.

Freddd, continued thanks for all the helpful details and your patience and encouragement.

Sara, you might be interested to know that when I started adb12 I got a lot of muscle spasms. I was kind of in denial about the muscle pain since I already have some, but all of it has now gotten more comfortable than in some time. So if you're not yet taking adb12, that may do the trick for you.

Lena, glad to hear you've come up with something workable for you, it sounds as if you are back on track and I look forward to hearing about your progress.

In fact, I look forward to hearing about everyone's progress. It's great to hear that Chris is doing much better (I'm a member of the kitchen-sink school of healing, myself) and I appreciate the encouragement from David and his questions and reports of what goes on. Can't begin to tell you what it's meant to me to find this forum and this thread. My life truly has taken a turn for the better.

P.S. one of mb12's side effects for me seems to be cheerful optimism.
 

SaraM

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Sunday,

I had muscle pain before starting B12. I am also taking 3000 mg adB12. How long did it take you to feel less pain.
 

Sunday

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Sara, I also had muscle pain (and nerve pain) before starting the B12. I'm not sure how much CFS was involved with its worsening, but I suspect it was involved as a series of liver cleanses had reduced the pain drastically for a couple of years, and it started coming back and getting excruciating (to the point of nausea when I moved it wrong) along with the illness.

It took, I think, somewhere in the neighborhood of 10 days for the cycle of increased spasms to lessened spasms to hey, it isn't hurting that much any more. I've also been using an infrared lamp, but I'm pretty sure the adb12 played a big part in that. I go to an acupressurist when the pain gets horrible, and she dramatically reduces it, but I haven't been able to afford that since well before I went on the adb12. I also had an Atlas Profilax some months before I found out about this B12 thing, and it helped quite a lot. All this is to say that I'm pretty sure that the adb12 was the main player in my latest bout of spasm and relief.

It's clear from reading this thread that people's reactions vary a lot, so my time frame and even my reaction may not apply to you - but it might. Good luck with that. I'll be interested to hear how it works for you.
 

winston

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B12

Hi Sara, I started 1/2 of the adb12 yesterday morning and by afternoon my calves and legs were burning and muscle pain, this morning a lot better. I was planning to up the adb12 to 1 whole pill but changed my mind. I still have nervousness from the mb12 too.

Lena
 

winston

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B12

Hi Fredd, you mentioned a website I thought was www.wrongdiagnosis.com with several people trying the B12 protocol, I could not find the B12 section. Today I need some encouragement that I am heading in the right direction with this treatment maybe if I could see people getting better it might help. Thanks.

Lena
 

dmholmes

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Hi Fredd, you mentioned a website I thought was www.wrongdiagnosis.com with several people trying the B12 protocol, I could not find the B12 section. Today I need some encouragement that I am heading in the right direction with this treatment maybe if I could see people getting better it might help. Thanks.

Lena
Here is the B12 thread at the wrongdiagnosis.com forums.
 

dmholmes

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The active B12 protocol was the first mentioned during the public session at the CFSAC meeting as being helpful for ME/CFS. Rich's partial methylation block was mentioned also, as were NO/NOO and Dr. Myhill's Mitochondrial Dysfunction.
 
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markmc2000

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freddd's active b12 protocol mentioned in CDC hearing

Hey freddd.

A lady, who testified before a department of health and human servvices CFS advisory commitee today, mentioned some people are having great success with an active b12 protocol that sounds a lot like the one you use and help people with here. They also mentioned other threapies, but the b12 protocol got the most attention from one lady who has gone to every corner of the world looking for "healing modalities".

I am optomistic I may be one of those lucky few based on some of responses to this point, however I realize everybody is a bit different.

Still got to go all out, but my sleep sure is better with what I have done so far. It seems as though I almost benefit when taking the vitamins and minerals right at the same time I pop a losenge.

Anyways, Thanks!
Mark
 

Freddd

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Hey freddd.

A lady, who testified before a CDC commitee today, mentioned some people are having great success with an active b12 protocol that sounds a lot like the one you use and help people with here. They also mentioned other threapies, but the b12 protocol got the most attention from one lady who has gone to every corner of the world looking for "healing modalities".

I am optomistic I may be one of those lucky few based on some of responses to this point, however I realize everybody is a bit different.

Still got to go all out, but my sleep sure is better with what I have done so far. It seems as though I almost benefit when taking the vitamins and minerals right at the same time I pop a losenge.

Anyways, Thanks!
Mark

Hi Mark,


A lady, who testified before a CDC commitee today, mentioned some people are having great success with an active b12 protocol that sounds a lot like the one you use and help people with here

This is great news. Can you point me at a clipping or ????

The one thing I haven't seen here is the most disappointing results of all, nothing at all. Some have knockem over results and some have subtle results.


I am optomistic I may be one of those lucky few based on some of responses to this point, however I realize everybody is a bit different.

Glad to hear things are improving.


Still got to go all out, but my sleep sure is better with what I have done so far. It seems as though I almost benefit when taking the vitamins and minerals right at the same time I pop a losenge.

It's been said by others that the difficult thing about vitamins and minerals is that everything has to be there at the same time for them to work. I've compared it to baking a cake from scratch which can be a real challange.
 

dmholmes

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It was the same person I mentioned in the previous entry. The CFSAC meeting is live here (Real Player required :mad:). The video should be available somewhere I hope afterwards.
 
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markmc2000

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Hi fredd.

here is the link for the current video. I is live today. A link is suppused to be online sometime in the next couple fo weeks for the meeting in whole.

(at http://videocast.nih.gov/)

Here is a link for the agenda today:
www.hhs.gov/advcomcfs/meetings/agendas/cfsac091029_agenda.html

Mr holmes? that is cool, I missed it. Seems like us CFS's we are a small group online, and the some of the other testimony referenced stuff people have menioned here like TOMK and his signature list was mentioned too.
 

winston

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B12

Hi Fredd, I am reading the posts from Sally Pacholok and ordered the book "Could It be B12". What are your thoughts on her recommendations. I have a Dr out of town who I may go see and have the MMA test & homocysteine test but since I have been taking B12s the Serum B12 will be skewed. How long after you are off B12s will the test be more accurate. Also if I did get the hydroxocobalamin injections would you still need to take B-right, adb12, folate and mb12. Also in getting the injections would the reactions be as severe as mb12 can be. I have not read through all the 1000 of pages yet. Thank you for your thoughts on this.

Lena
 
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reaction to injection?

Hi Freddd,

Ever hear of anyone having an allergic reaction to a B12 injection (or some aspect of it)? I have red, itchy welts on the surface of the skin in the location of my injections...they have developed over several days and have caused me to postpone continuing with them. I've given myself injections in the past for other reasons and have never experienced this sort of reaction (though at those times I was comparatively rather healthy). I was told my mixture contained only B12 (though likely saline or something also - I will look into this, but wanted to see if you had any experience with it too)

I'm not sure what to think...
Velha
 

Freddd

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Hi Fredd, I am reading the posts from Sally Pacholok and ordered the book "Could It be B12". What are your thoughts on her recommendations. I have a Dr out of town who I may go see and have the MMA test & homocysteine test but since I have been taking B12s the Serum B12 will be skewed. How long after you are off B12s will the test be more accurate. Also if I did get the hydroxocobalamin injections would you still need to take B-right, adb12, folate and mb12. Also in getting the injections would the reactions be as severe as mb12 can be. I have not read through all the 1000 of pages yet. Thank you for your thoughts on this.

Lena

Hi Lena,

I think that discontinuing the b12 for 6 months to a year to satisfy some doc to give you hydroxyb12 is riduculous and a loosing proposition. uMMA might take 3 or 4 years to get high again since adb12 doesn't leave all that quickly. Why do you want to put your body into biological breakdown mode again? You are just beginning to heal. The hydroxyb12 is 1% as active as mb12 and adb12 and is a loosing proposition. Why do you want to play "proof" games with a doc? The only definitive test of whether a person will respond to active b12 is to take active b12.

After a year on hydroxyb12 your reactions to active b12 will be worse because hydroxyb12 is only at best effective for 1/3 of the symtoms for 2/3 of the people. It is vastly inferior to what you are doing right now.

Sally's stuff is medical orthodoxy and hopelessly ignorant and out of date. Read that forum from the end. We have vastly improved the advice since she left. people are getting well now which they did not do on hydroxyb12 once each 3 months.

To make any real progress you would have to continue everything you are doing now and the hydroxyb12 is totally irrelevant as 10mcg or so converts to active at best. For about 1/3 of people hydroxyb12 does not work at all. At worst it can actually block active b12s from functioning according to limited research.
 

Marylib

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For Chris

Hi--thanks for your post.
Were you using hydroxy injections? If so, how often? I have access to these, but I am not sure how much and how often to use on Rich's protocol.
Thanks
Marylib
 

Freddd

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Hi Freddd,

Ever hear of anyone having an allergic reaction to a B12 injection (or some aspect of it)? I have red, itchy welts on the surface of the skin in the location of my injections...they have developed over several days and have caused me to postpone continuing with them. I've given myself injections in the past for other reasons and have never experienced this sort of reaction (though at those times I was comparatively rather healthy). I was told my mixture contained only B12 (though likely saline or something also - I will look into this, but wanted to see if you had any experience with it too)

I'm not sure what to think...
Velha

Hi Velha,

Yes I have heard of it but never had any reaction. It's virtually always to the preservative that is used in multi injection vials. Find out what they used and then ask for a different one. There are also ingrediants to balance the pH. Probably no saline.
 

dmholmes

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Symptom Check

Freddd, the last two days my teeth have been very sensitive when brushing. Any history of that being caused by the sublinguals?

Only thing I've changed is I'm doing the adb12 and mb12 at the same time, twice a day. I have done that before but not more than once.
 
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markmc2000

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sensitive teeth

Hey Djholmes,

I'm a patient and can't say much more than what I have experienced thru my own trial and error. But you know, I have had that same sensitive teeth problem with both alpha lipoic acid, and the addition of b12 losenges. I think It may be some sort of healing response. After I had teeth pain and such, my gum health improved. Maybe you are getting the same deal?

Sounds good to me.
Mark