Question for Fredd or others regarding effect of Cynacobalamin

[bertiedog]

I started a methylation protocol several years ago but was unable to tolerate the sublingual MB12 and Folapro because of severe migraines. So Dr Myhill suggested I try injecting daily 0.1 ml of MB12 and I have been doing this for nearly a year and have also taken at least 400 mcg Folapro in addition to 3 Thorne’s Basic Nutrients which contain 250 methyltetradydrofolate and 250 Calcium Folinate plus 112 AdB12 and 112 mcg MB12. I have stayed on lots of other basic supplements too.

I was disappointed in that I had no extra energy but a definite increase in migraines which tend to occur early mornings.

Just by chance Dr Myhill suggested I try her Transdermal B12 spray at 5000 mcg each day. I thought this contained HydroxyB12 but it turns out its Cynacolbalamin.

I stopped all MB12 apart from what is in the Basic Nutrient and just used the spray plus 400 Folapro etc. Within 5 days I noticed energy in my legs on a more consistent basis. Within 8 days I had purchased a Fitbit One tracker and I was doing over 5000 steps daily without any ill effects. And so it has continued. My legs are half the weight they were and energy is always there and last weekend on Days 13 and 14 I did over 7000 steps.

It feels like a minor miracle because I have been unable to walk more than 20 minutes for over 13 years now whereas today I walked for 40 minutes with just rather stiff, tired legs at the end. I have had to cut my thyroid medication in half because of over stimulation. In fact the only downside has been my sleep which has been awful. I have also been able to drop a small bit of hydrocortisone from my daily steroid dose.


Since cutting back on the thyroid meds things feel better and I have slept better but still a tendancy to wake after only an hour of being asleep but I do now go back to sleep with less thyroid meds.


What I don’t understand is why am I doing so well on Cynacobalamin which I understand to be ineffective? For me its like rocket fuel!! After reading through lots of Fredd’s posts on the B12 thread I added 1000 mcg sublingual MB12 today but don’t notice any difference but will continue to try and raise this to more than the 1000 mcg I took today

Could Fredd or anybody else please explain why it has been so effective for me. I have cut back to 3000 mcg of the TD spray daily the past few days without any ill effects.

I am still not keen on raising the Folapro above the 400 mcg plus the folates in the BN because of the tendency to severe migraines when combined with the B12. In fact the morning bad headaches/migraines are the only things not to have improved yet. I am very hopeful that my hair might even grow back!

Thanks Pam

 

[Freddd]

I started a methylation protocol several years ago but was unable to tolerate the sublingual MB12 and Folapro because of severe migraines. So Dr Myhill suggested I try injecting daily 0.1 ml of MB12 and I have been doing this for nearly a year and have also taken at least 400 mcg Folapro in addition to 3 Thorne’s Basic Nutrients which contain 250 methyltetradydrofolate and 250 Calcium Folinate plus 112 AdB12 and 112 mcg MB12. I have stayed on lots of other basic supplements too.

I was disappointed in that I had no extra energy but a definite increase in migraines which tend to occur early mornings.

Just by chance Dr Myhill suggested I try her Transdermal B12 spray at 5000 mcg each day. I thought this contained HydroxyB12 but it turns out its Cynacolbalamin.

I stopped all MB12 apart from what is in the Basic Nutrient and just used the spray plus 400 Folapro etc. Within 5 days I noticed energy in my legs on a more consistent basis. Within 8 days I had purchased a Fitbit One tracker and I was doing over 5000 steps daily without any ill effects. And so it has continued. My legs are half the weight they were and energy is always there and last weekend on Days 13 and 14 I did over 7000 steps.

It feels like a minor miracle because I have been unable to walk more than 20 minutes for over 13 years now whereas today I walked for 40 minutes with just rather stiff, tired legs at the end. I have had to cut my thyroid medication in half because of over stimulation. In fact the only downside has been my sleep which has been awful. I have also been able to drop a small bit of hydrocortisone from my daily steroid dose.


Since cutting back on the thyroid meds things feel better and I have slept better but still a tendancy to wake after only an hour of being asleep but I do now go back to sleep with less thyroid meds.


What I don’t understand is why am I doing so well on Cynacobalamin which I understand to be ineffective? For me its like rocket fuel!! After reading through lots of Fredd’s posts on the B12 thread I added 1000 mcg sublingual MB12 today but don’t notice any difference but will continue to try and raise this to more than the 1000 mcg I took today

Could Fredd or anybody else please explain why it has been so effective for me. I have cut back to 3000 mcg of the TD spray daily the past few days without any ill effects.

I am still not keen on raising the Folapro above the 400 mcg plus the folates in the BN because of the tendency to severe migraines when combined with the B12. In fact the morning bad headaches/migraines are the only things not to have improved yet. I am very hopeful that my hair might even grow back!

Thanks Pam

Hi Pam,

I don't have an explanation. However if you can see the red color in light then it is a mix. CyanoCbl is sensitive to light and breaks down partly to HyCbl. However why you are affected so much is unknown to me. This has happened occasionally since the 50s. At that time strong responders were treated like drug addicts and cut off for chasing "placebo effects". The docs were threatened if they continued to give b12 to those people who wanted it for the placebo effect. So instead of investigating and researching such people and seeing why they responded well they were punished and so were the docs.

Clearly, your specific biochemistry handles CyCbl for some reason. It may peter out after a while which also happened which was why the AMA considered it placebo.

Only one brand of MeCbl works so much better than any others is Enzymatic Therapy. In any case, very good to have the effect. Do you have terribly painfull muscles in your neck? Reverse curvature?

You might try Anabol Dibencoplex for a 5 star AdoCbl which is the main energy producer. That works with L-carnitine fumarate most often.

 

[bertiedog]

Hi Fred

Yes the liquid is bright red no question of that and I have kept it in a dark cupboard since it came through the post. I have cut back to just 1 spray today without any difference in energy.

Yes I do have very painful neck muscles when pressed but not really too aware of them for the most part although with the migraines the neck and shoulders can be very painful. I do have several knots on my shoulders which are painful. Actually I have a very straight spine, no problem there. The only other problem I do have is that when I walk my body relies quite heavily still on a good level of blood sugar but especially in the mornings as it runs out I develop quite severe sciatica just on the right side.

Actually that symptom has improved a lot in the afternoons and evenings since the B12 spray. My body seems to want my blood sugar to be around 6 and when it drops to 5 I get this severe pain down my buttock and sometimes into my leg. Obviously there is still something very amiss.

What I am doing is using up the Jarrow MB12 I have and will then move to the one you suggest. I am still loathe to increase the MB12 from the 1112 mcg plus the 112 mcg AdnB12 I take daily together with 650 mcg L-Methylfolate and 250 mcg calcium folinate. I also take loads of other supplements like Fish Oil. Q10, Vit C, D, E but have stopped the B2 today. I tried the Carnitine Fumerate for a very long time without any great effects but that was before the B12 spray.

To be honest I am finding it quite a balancing act between my thyroid medication needing to be cut back just a little, my adrenal meds and this effect I am getting but at times I am definitely feeling over stimulated with great trouble sleeping. The last 2 nights I only managed 4 hours each night whereas before the B12 spray I would regularly sleep for 7 hours non-stop.

I think you have said in the past that the body is not used to all this extra energy and the sleep thing will be temporary. I do hope so because it is really bad for my adrenals not to be getting better sleep and in the future I would crash if it kept happening because I don't have any adrenal function left of my own.

Thanks

Pam

 

[Freddd]

Hi Fred

Yes the liquid is bright red no question of that and I have kept it in a dark cupboard since it came through the post. I have cut back to just 1 spray today without any difference in energy.



Yes I do have very painful neck muscles when pressed but not really too aware of them for the most part although with the migraines the neck and shoulders can be very painful. I do have several knots on my shoulders which are painful. Actually I have a very straight spine, no problem there. The only other problem I do have is that when I walk my body relies quite heavily still on a good level of blood sugar but especially in the mornings as it runs out I develop quite severe sciatica just on the right side.



Actually that symptom has improved a lot in the afternoons and evenings since the B12 spray. My body seems to want my blood sugar to be around 6 and when it drops to 5 I get this severe pain down my buttock and sometimes into my leg. Obviously there is still something very amiss.



What I am doing is using up the Jarrow MB12 I have and will then move to the one you suggest. I am still loathe to increase the MB12 from the 1112 mcg plus the 112 mcg AdnB12 I take daily together with 650 mcg L-Methylfolate and 250 mcg calcium folinate. I also take loads of other supplements like Fish Oil. Q10, Vit C, D, E but have stopped the B2 today. I tried the Carnitine Fumerate for a very long time without any great effects but that was before the B12 spray.



To be honest I am finding it quite a balancing act between my thyroid medication needing to be cut back just a little, my adrenal meds and this effect I am getting but at times I am definitely feeling over stimulated with great trouble sleeping. The last 2 nights I only managed 4 hours each night whereas before the B12 spray I would regularly sleep for 7 hours non-stop.



I think you have said in the past that the body is not used to all this extra energy and the sleep thing will be temporary. I do hope so because it is really bad for my adrenals not to be getting better sleep and in the future I would crash if it kept happening because I don't have any adrenal function left of my own.



Thanks



Pam

Hi Pam,



BE VERY CAREFUL with making thyroid adjustments. It is VERY RARE for the thyroid level to change due to b12. When it does it is usually because a person is in active Hashimoto's thyroiditis. The critical action time on the thyroid medication changes is weeks. So it takes some weeks for the change to be effective. People have really messed things up doing this. The energy in this is from ATP startup, not increased thyroid activity and TSH is not usually changed. Since I started this I have had to increase from 113 to 125 to 137 mcg with about 5 years between changes. These are the only two changes in 40+ years.





If you go back to Adelle Davis who popularized "adrenal exhaustion" in the 1950s and 60s, the treatment was liver (deadlock quartet), larger doses of pantothenic acid and lots of animal protein (again, deadlock quartet).





The Jarrow Mb12 is MOSTLY USELESS now. You would be better off giving it to somebody who doesn't have problems or throwing it out and replacing it. I gave away all of mine to people who don;'t have a problem and won't notice the difference at all. It's is predictably almost completely ineffective for our purposes here. It MAY be providing the methyl group needed for converting the Cyanocbl. However, the AdoCbl and l-carnitine fumarate (taken without food) is the other half of what is needed for the "ADRENAL FATIGUE". I had a small "just noticeable difference" once with CyCbl with my burning red tongue. I was an "exhausted methylator" from years of CyCbl and folic acid which Rich called "partial methylation block" which can be caused by CyCbl, HyCbl, folic acid and folinic acid and veggie folates in susceptible people.



When a person has 1% of the level of b12 they need in their body each dose is felt. Moving it up to 2% is a HUGE increase as perceived by the body. Then a person takes AdoCbl and finally gives enough to their mitochondria instead of starving them, and enough AdoCbl each day to work on inflammation. The amount of MeCbl and AdoCbl that can be generated from CyCbl can NEVER be enough for all 5 or so levels of healing. Look at the levels of methylation descriptions to see what you are NOT turning on. Trying treatment based on Active B12 and folate is a very exacting thing. If you don't do it exactly right it doesn't work. There are dozens of places for it to go wrong, mostly based on the ideas of "detox" and "adrenal exhaustion" as well as fast changing thyroid illusion.



So if you want to get rid of "adrenal exhaustion" you need to get the mitochondria working, especially the Cerebral mitochondria to generate the ATP where it is needed for making the adrenal hormones. They are 100% dependent u[on the Deadlock Quartet, all of it, plus other cofactors and instead of pantothenic acid using the active form of pantithine, after the deadlock quartet is in place. In any case that is the theory based on Adelle Davis and lots of pragmatic experience. People have terrible problems BECAUSE of their beliefs in this. This seems "counter intuitive" to most people, but one really does have to keep right on that energy edge to cause the body to readjust the ATP- STAT (instead of thermostat). The body works on a homeostasis system. When in the various conditions caused by partial methylation or ATP block as well as methyltrap, the body has it's homeostasis systems keeping one there. It is like jacking up a sagging porch, there has to be a lot of energy put into jacking it up to get it back to the "higher" state and then the homeostasis systems will tend to keep it there. Avoiding that energy edge prevents healing and normalizing. To get from crashed to normal might take 10 large seeming differences before the increases fade away and equilibrium is reached.



I healed because I treated "detox" as a problem that could be solved and was even a flag pointing the way to healing as a side effect of healing startup. I know this is a controversial idea. I also know that the best predictor of who will heal in this is the persons belief systems about these matters. It's just like predicting who will have trouble (become and addict) with opioids. There are a few questions about opioids and pain relief questions that are about 80% predictive. Also if a person smokes tobacco and hasn't stopped and/or is an alcoholic, is highly predictive. 85% of pain patients who become opioid addicts with their prescriptions are already tobacco and/or alcohol addicts. They are also the ones who have "addict beliefs" about opioids. At the pain clinic I go to, I was given the MMPI II normed on pain patients. This gets at those same questions in it's own ways and can predict with about 90% accuracy when interpreted properly who is likely to struggle with addiction problems. Just a conversation with somebody about these things will expose the addicts attitudes in 5 minutes.



In many treatments of various conditions beliefs don't matter as much as they do in this. A belief system that has a person making the wrong choices based on wrong conclusions will not heal. Democracy can work well as long as 51% of the people don't consistently make bad choices. When they do, they make 100% bad decisions.



In comparative psychology we studied the game strategy of a fish, a turtle and a decorticate rat (cerebral cortex removed, no higher mammal thinking). The game is to press the bar under the light that will be red or will be green.



The green light lights 70% of time and the red 30%.

1. The fish hits the bars at random, essentially hitting each 50% of the time. The payoff ratio is like this: PAYOFF = 0.5 x redlight + 0.5x greenligjht = 0.5 * 0.3 + 0.5 * 0.7 = 0.15 + 0.35 = 50%

2. The turtle uses a matching stategy hitting the green light 70% of the time and the red light 30% of the time so the payoff ratio is like this: PAYOFF = 0.7 * 0.7 + 0.3 * 0.3 = 0.49 + 0.09 = 58%.

3. The decorticate rat uses a maximizing strategy and hits the green bar 100% of the time so the payoff ratio looks like this: PAYOFF = 1.0 * 0.7 + 0.0 * 0.3 = 70%

So applied to this one the payoff ratios of different ideas can be examined and a strategy selected.



So if we define PAYOFF as “healing startup on one level” as the payoff, remembering there are at least 5 such payoff definitions, and they can be made smaller as the process is understood.



So we look at ideas, and I am going to use DETOX here as that isn’t mentioned to you and is one of the biggest problems.



People following “Detox” theory this year will generally be following it year after year. The payoff ratio at starting healing is approximately zero,. The people who were in endless “detox” 5 years ago when I started here are often still are years or decades later in endless detox. If on the other hand if one uses the “induced deficiency” definition of “detox”, while complicated sometimes, is a problem that 50% or so can approximately solve in one day or less, with refinement to follow. As there are complicating factors such as too much of some things or not enough of others or both it can pop up multiple times in multiple guises, each one solvable.



If one succeeds in making correct interpretations and choices they can be through the worst in 1-2 years for CFS/FMS/MEand can start rehabilitation.





So in this let’s look at the Jarrow being continued beyond knowledge of its uselessness (except maybe accidently a methyl donor). It is not an effective strategy. It is a choice to get poor results as Jarrow isn’t working for anybody at all that I know of. The problem with CyCbl is that you will never have diffusion distributed MeCbl and AdoCbl at a level needed for widespread generalized healing even if it does help some. Diffusion distributed active B12s are needed for probability of healing greater than 1%.



The results with the mix of the deadlock quartet which is needed to turn on all levels of healing are near 95% at actually getting multi level widespread healing started. Then it is the even more difficult strategy of “keep it going”.



If you have CNS (brain and cord) problems that too has a best strategy and that is to raise the serum level of active b12s to100,000 to 200,000 pg/ml to allow diffusion into the CSF at levels high enough to turn on neurological healing. Since other strategies have basically 0% probability of effectiveness it depends upon whether a person is desperate enough to really heal to try a counter intuitive thing like this that comes to the forefront here ONLY because I and others have avoided wheel chairs or been gotten out of them through this strategy is it known. SACD will kill me if it progresses. I have reversed it and held it in a rough equilibrium between my estimate of 50-90% remission for 5 years and I know exactly what I need to do to do so.



I have done continuous trials for 10 years to be CURED of FMS and CFS and put other things largely in remission and kept them there. However, every titration reaches a limit where no more changes happen OR they induce side effects that are undesirable, like turning off healing or that “one more thing” trashes a working system and it is a lot of work to get it going again. Re-titrating is needed rather than just switching one thing because that doesn’t take into account changes.



You have something going. Now you can make changes that improve that and spread that to more systems. You have a clue and can follow the whole chain of breadcrumbs. However, changing your working hypothesis will allow you to find what works better and more completely. However, it can be painful. Nervous system healing is very PAINFUL physically and emotionally. That gets better over about 9 months to 10 years or more.

 

[bertiedog]

Thank you Fred for taking all the time to explain how you feel things should go. All I would say at the moment is that I have looked up about having too many methyl donors on board and not being able to handle it getting symptoms like hyper brain, insomnia, pain and migraines. But when one blocks this by taking niacin or even a drug like Gabapentin these symptoms diminish.

The answer then with this other theory is that one cannot handle the amount of methyl donors one has been taking and one should go a bit lower on the doses or take something like HydroxyB12 as per Rich's suggestions. I understand you don't agree with this theory but the way I have been feeling as the week has gone on I don't think I could carry on feeling some hyper.

I forgot to add that I do eat a lot of folate foods every day, ie green salads and later in the day veg like broccoli and cauliflower so this might complicate things a bit more.

The other thing I haven't told you is that there is another reason for my adrenal problem. I lost 4 pints of blood immediately after childbirth way back in 1975 and my doctor thinks it induced a mild Sheehan's Syndrome which went on causing me problems because my hormones were never then produced in the right amount. In 2002 I was finally treated with steroids at a replacement dose of 6 mg and also I started on dessicated thyroid and did feel a lot better. However it wasn't a cure and as the years went by my ability to walk for longer than 25 minutes before my energy ran out didn't improve. I don't think I have Addisons but because I have been on steroids for so long I understand my adrenals would have atrophied.

I also wondered if you disagree with Ben Lynch who warns about going too fast on methyl donors because they could cause so many bad symptoms.

Finally I should say that on a normal day for me I don't feel ill. I am able to lead quite a normal but quiet life. I do voluntary work and run a support group for Fibromyalgia sufferers but when I feel like I have these past days I wouldn't be able to do these things because of the horrendous migraines induced from all the methyl donors I have been taking. FYI I am 65 years old!

Best Wishes
Pam

 

[Sally Leone]

Hello,

I am new to this forum and looking for help interpreting my Health Diagnostic Methylation Panel. I am positive for the C variant for the MTHFR mutation so most of my results are not unexpected (I stopped all supplements for 48 hours prior to get a base line reading). However, there are a couple of odd ones that cannot be explained by this mutation alone, especially the very deficient folicinic acid. Any help is very much appreciated. Here are my results:

Glutathione oxidised .60 .16-.50
Glutathione reduced 2.7 3.8-5.5
SAMe 211 221-256
SAH 56.6 38-49
5-CH3-THF 7.9 8.4-72.6
10-Formyl-THF 8.4 1.5-8.2
5-Formyl-THF 2.00 1.2-11.7
THF .47 .60-6.8
Folic Acid 15 8.9-24.6
Folicinic Acid 2.7!! 9.0-35.5
Active folate 341 400-1500
adenosine 25.7 16.8-21.4