Cynocombobulation

[PointsNorth]

My first forum post. Great Community. Forgive me for starting a new thread

I have MS and have been on an quest to solve what i believe may be a contributing factor to many problems I associate with my MS and Crohns. I've been scouring the WWW and working with my doc (who also has MS) and my long-time Gastroenterologist but no breakthroughs . . . until I stumble on Phoenix. Holy B12, Batman!

I had a resection of my terminal ileum in '91 as a result of Crohns and that is where my affair with B12 begins. I started taking b12 injections every 5-6 weeks (cynocob) and since MS diagnosis gradually more often until the present when currently I take every 72 hours. This prevents a crash (fatigue) and a slight but noticeable improvement in a few 'MS' symptoms.

My serum B12 levels are off the charts (1400) and my Gastro thinks I'm crazy but I explain the twice weekly boost I get 24 hours after taking it. I've tried taking 15mg methylcobalamin sublinguals tabs with no results until today when I kept under my tongue longer than usual (after reading some posts here at PR). Fatigue noticeably improved, numbness in hands less and slight improvement in mobility.

I'd like to know which B12 protocol/regimen folks around here think that I should try? Surely I have malabsorption issues of some kind? Perhaps there is a regimen forum around here where I could post my complete regimen that I could then point to in my signature?

I once read that there is not ONE MS symptom that cannot also be explained by a B12 deficiency! While I'm
pretty certain that I have MS, I would like to know if my current love/hate relationship with B12 could be
implicated in my current MS struggles.

Lastly, I've had my Internal Jugular Veins ballooned twice in the last two years with amazing results each time . . . but they only lasted 1-week each time. Re-stenosis is a common homeostatic response in the jugs apparently and they don't always take nicely to stents. I've heard of one girl with CFS that had her veins ballooned with some amazing results. The most common symptom improvement cited by MS patients treated for CCSVI is In the fatigue department. My fatigue resolved 100% after my first procedure. Allowing oxygenated blood to get to the brain does wonders! And Neurologists explored a vascular connection to MS for SEVENTY 70 years. Now they are trying to discredit the idea. A lot of tails between a lot of legs? When I mention CCSVI and the 70 year MS-vascular timeline to my Neurologists, they look like like someone flew a plane into their building! Ouch!

Apparently Paulo Zamboni and a neurologist, Zavidinov spoke before Canadian Parliament today.

 

[taniaaust1]

Hi
I too have a B12 level of over 1400 when I have twice weekly B12 injections.. In my case it has only helped my memory (unfortunately thou didnt help my energy at all) but took me from not being able to think at all or remember even simple objects to being able to remember these basics eg what a door or toaster was.. I once got trapped in a room cause I forgot that doors existed. Without B12 injections, I wouldnt be functioning where I are today. Thou I dont have MS but have ME.. I was doing the B12 injections twice a week as I could feel it actually wear off within 4-5 days. I continued with the injections for several years.. till I got to the point where I didnt go downhill again a few days after I stopped them.

It is highly recommended not to take cyanocab in these large amounts.. cyanocab injections are okay for those who have that form of Pernicious anemia or a normal kind of B12 deficiency as they dont take it in anywhere near the amounts that we need to do (those who have ME do eg those others may be only having one injection per month). Cyano part of the name stands for Cynaide which of cause is highly toxic thou the amounts taken in "normal doses" of this (which arent what we take) are said to be neglible http://en.wikipedia.org/wiki/Cyanocobalamin . i strongly suggest if you are going to do B12 injections to not take the Cyano form (which is also artifical) but either do methyl form or hydrox form of B12 injections which would be safer. Those taking FAR MORE THEN NORMAL I AMOUNTS using B12 injection dont tend to take the Cyano form due the possibility of toxicity from the Cynaide.

Subliminals are said to also be good by most here thou I havent as yet tried those.

B12 is said to help those who have ME due to having "intracellular" deficiencies or we just cant use B12 in the normal kind of way and hence need far more. Its also acts as a detox thing. The very high B12 could be helping you in any of those ways.

 

[alex3619]

Welcome PointsNorth. No apology necessary for starting a new thread: each thread is a chance for us to learn more, and there is always more to learn.

There are hundreds to thousands of posts on B12 here and a few blogs. We had a researcher posting here who was working on B12, folate and related factors, who sadly died recently. He had a lot to say. His name was Rich van Konyenburg, and he is greatly missed.

The vitamin forms of B12 are methyl and adenosyl cobalamin. Cyanocobalamin and hydroxycobalamin are drugs that are supposed to convert to vitamin B12. Sometimes they do. In some people they don't do that so well. That is why we address combination protocols involving B12, as it interacts with other vitamins including folate. As to folate, folic acid is again a drug that is often not converted to the vitamin methyl folate. In fact its now been tentatively linked to dementia, cancer and poor natural killer cell function, though this will require much more research to establish causation if any. In particular something near eighty percent of post menopausal women cannot properly process folic acid into methyl folate.

Forgive me if you already know all this, I can not tell how much you have read of this forum.

We often discuss MS treatment protocols here too, largely because many of them might also apply to ME. Many treatments used for MS are also used for ME, though our experience is a little different perhaps. In particular I was on a protocol similar to Terri Wahls (spelling?) protocol for MS back in 1993 as a treatment for ME. It had mixed results for me, but is an example that similar lines of research can apply to both diseases.

Best wishes, Alex

 

[PointsNorth]

Thanks for your responses Alex & tania. Is there a b12 regimen that you can recommend? What scares me about cynocobalamin is the mercury preservative that is used (thimiserol?) Is Freddd's protocol the most commonly used one? I'm looking for a starting point.

 

[Freddd]

Thanks for your responses Alex & tania. Is there a b12 regimen that you can recommend? What scares me about cynocobalamin is the mercury preservative that is used (thimiserol?) Is Freddd's protocol the most commonly used one? I'm looking for a starting point.

Hi Points North,

MS fits right in with the low cobalamin in CSF/CNS studies and elevated HCY (indicative of low mfolate and/or mb12 or even p5p). I have a demyelination b12 deficency disease that is very similar to MS except that "it don't get no respect", subacute combined degeneration. I would suggest that you go to the active b12 basics post pinned at the top of the methylation menu and read relevant posts. The revisions are later on the thread than the earliest versions. This the suggested starting point, Some reading.

 

[L'engle]

Since you're in Canada I might recommend using AOR's methylcobalamin. It's the best one I've found. You can get 5mg or 15mg tablets. Dissolve them sublingually for 2 hours in the morning. I've worked up to taking 45mg per day. I found I needed more than 20mg to see some benefits. I'm still very much below normal functioning but the B12 does something.

 

[PointsNorth]

Thanks L'engle. I have been using AOR 15mg for a while. I think I need to let them dissolve longer.

Are you using any other B12 forms/enzymes??

PN

 

[Phred]

I just wanted to point out that the 15mg AOR Mb12 sublingual has folic acid in it. The 5mg sub ,doesn't. I was going to order the 15mg one until I saw the folic acid. Needless to say I was very disappointed. Now I use 4 or 5 of the enzymatic therapy sublinguals daily. Huge, huge difference from the 5mg AOR sublingual.

 

[Crux]

The AOR brand methylcobalamin, 15mg., that I use, does not contain folic acid.

 

[PointsNorth]

Thanks people! Phred, can I ask what the brand of the enzymatic therapy sublingual is that you use? Is there any other B12 in your regimen?

THX, Points

 

[Phred]

Crux, good to know that AOR has changed their 15mg sublingual. That must be fairly new. I know in the summer there was folic acid. Arx and I talked about it. He was concerned about the folic acid, but AOR was one of the few brands he could get in India. I thought it odd that their 5mg sublingual didn't have it, but their 15mg one did. Maybe there were complaints and they took it out.

PointsNorth I'm taking the enzymatic therapy that Freddd recommends. I still have a few Jarrow left so I'm finishing those off. I'm waiting for my next order from iherb. My first order never showed up. (I'm in Canada also.) I was too nervous to order again. I waited many months, but finally couldn't stand it and ordered again. It took a couple of weeks, but got here just fine. I just wish the ET b12 came in a larger bottle. If you have to take 7 or 8 a day that 30 pill bottle doesn't last very long. Unless I'm missing something and there is a larger bottle I don't know about.

 

[Crux]

Hi Phred;
I must thank you for calling my attention to the ingredients of AOR. I realized that some of my bottles are 5mg., and others are 15mg. of methylcobalamin.
For some weeks now, I thought I was taking the15mg. subs., when I was actually taking the 5mgs. ( dupe!)