Folate deficiency may need B12 treatment FIRST

[Sparrow]

Thought I would pass this on, since I know many people here end up taking B12, folate, etc, and sometimes without the support of a doctor. I didn't know all the details of this, and I could see how it could be dangerous to not have this information. I preface all of this by saying that I am not a doctor, so it isn't my intent to give medical advice, etc., etc. Obviously discussing with a knowledgeable doctor would be the ideal course of action.

Basically, if you have a folate deficiency, you must make sure your B12 levels are okay before you treat it. And just methyl B12 may not be sufficient.

(I hate quoting wikipedia, but this was the first relevant quote I came across, and I didn't have the energy to search for a more credible example).
http://en.wikipedia.org/wiki/Subacute_combined_degeneration_of_spinal_cord

If someone is deficient in vitamin B12 and folic acid, the vitamin B12 deficiency must be treated first to avoid precipitating subacute combined degeneration of the [spinal] cord (giving folic acid first will turn the remaining B12 into methylcobalamin which will not be able to participate in fatty acid metabolism).

If you have both a B12 and a folate deficiency, it is important to get your B12 up to good levels before you introduce folate into the picture. And it seems potentially important that it is not just methyl B12 (which is what so many of us take). This is the part that seems key, but that I am also less clear on the details of. Some countries use Hydroxy B12, most use Cyano B12 (which I know we all hate), so both of those seem fine.

The problem seems to be that the body prioritizes certain functions of B12 over others. And when you've been deficient in both and add folate, it will turn what B12 you have into methyl B12 (for use in making blood cells with the folate, I assume). BUT...there may not be sufficient B12 supplies left over for the other things it needs to do. Methyl B12 is great at what it does, and is a critical thing for us, but it doesn't do everything. And that can result in an even worse B12 deficiency for some body parts and resulting damage to the nervous system that can be permanent.

So you would first need to take enough Hydroxy B12 to get your levels up, THEN introduce the folate. As I understand it, taking methyl B12 in addition should be fine, but methyl B12 on its own may not prevent the damage. Hydroxy (or Cyano) before the folate seems key.

Note that this should only be a problem if you are deficient in both, but it seems like some of us have been so I thought it was worth mentioning. If a doctor catches it, they'd give you a shot of B12 and everything would be fine, but I know that not everybody here has a doctor working with them on this stuff. And since we spend a lot of time talking about functional B12 and folate deficiency, it might be worth taking some extra hydroxy B12 before the folate just in case even if there isn't an obvious enough problem for the doctors to easily catch (since the whole point of us taking B12 and folate in the first place is the assumption that we are deficient in ways that may not show up on those tests).

Like many things, some of the symptoms of nervous system damage caused by this are things that are so inherent in this illness that we might never notice them, or think that something we were doing could be causing them (fatigue, muscle weakness, sleepiness, balance problems, tingling, depression, etc.).

Anyway, just thought it might be worth mentioning. I'm not 100% certain on the methyl B12 issue myself, but that seems to be the implication. If anyone can clarify, or has spoken with a doctor about treating folate deficiency in the presence of B12 issues, please feel free to weigh in. Use the information as you will.

 

[Freddd]

With the new paper on adenosylcobalamin that I posted, it makes clear that adenosylb12 and methylb12 are "radically" more effective. These are what are needed to protect agains neurological deterioration. Hydoxycbl as I've said befroe is the 1% as effective starvation workaround for the missing active adenosylb12. The Deadlock Quartet plays again.

 

[Sparrow]

I hadn't looked into whether adenosyl could fill the gap in place of hydroxy or cyano. Just wanted to mention that methyl alone might not be a good idea at first. I know not everybody here follows either protocol exactly. A lot of people seem to mix and match. Do you know if adenosyl protects against folate-induced spinal damage then?

And I wasn't suggesting using only hydroxy to fix a functional B12 deficiency. Just that it seems potentially important to make sure that there's enough to go around before ramping up folate. I'm with you in thinking the more active forms are needed for many of us to address the full B12 issue (I myself take methyl and adenosyl as part of my protocol). But I also think many people start the protocols gradually, and some may not add in adenosyl B12 until later, if at all. And it seems like using just methyl B12 and methylfolate could lead to problems if that person was actually folate and B12 deficient to start.

And since that's the assumption underlying why we take them in the first place, it seemed worth mentioning. The same things that result in folate triggering a greater demand for potassium may also deplete B12 that's needed to protect the nervous system. So since so many of us have low potassium symptoms, it seems wise to be careful with this as well, especially since it seems not that difficult to prevent the problem by adding in an additional type of B12 or making sure that levels are okay before adding the folate. Permanent nervous system damage is what we're trying to avoid in the first place, right?

I hope that clarified what I was saying...?

 

[Freddd]

I am 100% in favor of taking BOTH in titration. Very low is fine, 50mcg each per day for instance is a good place to start and in a few days could very well turn on general healing. Their lack mutually deadlocks the many functions. There is a 4 way deadlock, the Deadlock Quartet I have really just started descibing. Permanent damage happens. However, with the deadlock quartet, the amount of damage that is permanent appears to be about 1% of what is called permanent wirh hydroxycbl and/or cyanocbl. Over time the taking of hydroxycbl increase b12 deficiency and increases damage. It isn't a slow start. It is a rapid decline down a slippery slope becasue a few things get better while hundreds can worsen, which is exactly what is described in the new paper, http://forums.phoenixrising.me/inde...min-the-very-large-gorilla-in-the-room.20229/

This is a gamechanger indicating that the pathways followed with hycbl appear to be the fallback starvation mode functions, not the primary far more effetive pathways with the real b12s, the adocbl and mecbl (adb12 and mb12). Hydroxycbl isn't just slower, it goe backwards making 90%+ of b12 deficiencies WORSE while giving the illusion of improvment via improvment of a few symptoms. The longer hydroxycbl is continued the worse the deficiencies.




DISCLAIMER

I am a self taught systems analyst and consultant. I am not credentialed, certified or licensed to do anything besides drive a car. I have been disabled by the disease processes being discussed and affecting neurology in a multitude of ways for 10 years and impaired in a variety of ways and levels for 54 years before that. Everything I say is my opinion, synthesis, understanding or otherwise of my own creation except direct attributed quotes. Approximate paraphrases are also my interpretation of what I have read. All of this is at best my data analysis, understanding, synthesis and hypotheses and not to be construed as medical advice. I am not responsible for anything you do with any information provided in any way. Anything you do is your own responsibility and at your own risk. There are no published peer reviewed studies backing up my opinions or statements, except the incidental ones quoted or implicit in my synthesis or understanding, and then only in so far any reading of such papers may confer. Your interpretations, actions and variations of what I say are strictly at your own risk.

 

[Lotus97]

I thought hydroxocobalamin (at least for some people) converts to methylcobalamin and adenosylcobalamin which is why Rich recommends starting with hydroxy B12 and then switching to methyl B12 and/or ad B12 if we do not get a response within a certain amount of time. Does the Deadlock Quartet happen with everyone or just people who aren't able to convert hb12 to adb12 and mb12?

 

[caledonia]

Hydroxycobalamin will convert to methyl and adenosyl in everyone, except those who have a mutation that stops the conversion. Freddd appears to be one of those people. It is unknown how rare or common this is.

Rich had posted which SNPs he thought Freddd had which would stop the conversions.

It would be nice if Freddd did 23andme so we could figure out exactly what mutations he has, then others could compare their results to see if they have the same mutations. Then they would know what to take.

Anyway, Rich recommended hB12 so that you would get both mB12 and adB12. So if you're if taking mB12, then it sounds like you should also be taking adB12.

Cyano B12 is a synthetic vitamin which should convert to the active forms, but many people have SNPs which prevent this.

In conclusion, everyone regardless of their SNPs will be able to utilize the two active forms mB12 and adB12, which is what Freddd is saying. The reason Rich was saying use hB12 was so that you don't end up taking too much of the active forms and overdrive the methylation cycle. If you're able to convert hB12, then your body will convert and use exactly the amount it needs. Everything in balance. However, if you can't convert hB12, and you have to take the two active forms then you'll have to go by how you feel, which is what Freddd does.

 

[Freddd]

I thought hydroxocobalamin (at least for some people) converts to methylcobalamin and adenosylcobalamin which is why Rich recommends starting with hydroxy B12 and then switching to methyl B12 and/or ad B12 if we do not get a response within a certain amount of time. Does the Deadlock Quartet happen with everyone or just people who aren't able to convert hb12 to adb12 and mb12?

Hi Lotus,

HyCbl will convert to a limited extent to to MeCbl and then to AdoCbl. This is a keyhole that limits how much you get in the active transport system HTCII. Almost everybody that reacts to one of the active b12s will also have a separate response to the ohter. A key factor is that when more than 100mcg of combined active MeCbl and AdoCbl is absorbed it reaches a distribution level via diffusion such that most functions in the body needing it can get it. I will be putting a lot more detail down over the next week, in progress now. But basically if one doesn't take all of the deadlock quartet, it holds up one or more layers of healing depending upon how severe the insufficiency is. As AdoCbl, Methylfolate and MeCbl start up methylation on multiple levels (again part of complications description I am working on) at least 1 level will generally startup immediately unless the person is very short on L-carnitine or any of half a dozen others. But the 95% are the Deadlock Quartet.

Again forthcoming shortly is going to be a multi level methylation breakdown, basically at least a basic and a severe breakdown, how the folate affecting genes are the major ones having to do with most of this and how the symptoms can be very confusing.

people who aren't able to convert hb12 to adb12 and mb12

The kids who are not able to convert HyCbl to MeCbl and AdoCbl die from failure to thrive and other such. They don't survice to have FMS, CFS, and ME as adults. That is only a hypothetical. However,m as an example, the conversion of HyCbl is dependent up having enough AdoCbl and L-carnitine fumarate to provide the enzyme and ATP needed in order to convert Hycbl to Mecbl. It also needs enough L-methylfolate and MeCbl to have working methylation to cnvert the HyCbl. That is the fatal flaw of HyCbl. It too is subject to the Deadlock Quartet so if a person is too deficienct in any of the 4 they temporarily can't convert HyCbl, the "exhausted methylators" I called them 10 years ago.

 

[Freddd]

Hydroxycobalamin will convert to methyl and adenosyl in everyone, except those who have a mutation that stops the conversion. Freddd appears to be one of those people. It is unknown how rare or common this is.

Rich had posted which SNPs he thought Freddd had which would stop the conversions.

It would be nice if Freddd did 23andme so we could figure out exactly what mutations he has, then others could compare their results to see if they have the same mutations. Then they would know what to take.

Anyway, Rich recommended hB12 so that you would get both mB12 and adB12. So if you're if taking mB12, then it sounds like you should also be taking adB12.

Cyano B12 is a synthetic vitamin which should convert to the active forms, but many people have SNPs which prevent this.

In conclusion, everyone regardless of their SNPs will be able to utilize the two active forms mB12 and adB12, which is what Freddd is saying. The reason Rich was saying use hB12 was so that you don't end up taking too much of the active forms and overdrive the methylation cycle. If you're able to convert hB12, then your body will convert and use exactly the amount it needs. Everything in balance. However, if you can't convert hB12, and you have to take the two active forms then you'll have to go by how you feel, which is what Freddd does.

Hi Caladonia,

Now that I have done the testing let's get rid of the old idea that turning on healing was overdriving methylation. 100mcg of combined Adocbl aqnd Mecbl is enough to start normal healing in almost everybody within 3 days, no big doses needed, triggering a need for more L=Methylfolate and potassium. With the Large Gorilla, Adenosylcobalamin paper by Carmen Wheatley pointing out that it looks like the anti-inflammatory properties of AdoCbl are "RADICALLY" greater and more complete than Hycbl which leaves most inflamation in place. The difference so radical that she was hypothecizing that AdoCbl is the natural evolved preferred pathway and the reclaimed HyCbl is the starvation mode workaround.

 

[caledonia]

Freddd, are there similar absorption problems with adB12 as mB12? In other words, do you have to bypass the stomach to get it to absorb?

What sort of testing did you do? Have you posted the results somewhere? If so, can you provide a link?

 

[Skyline]

Some test results backing it up would definitely build more confidence in this protocol.

 

[pinkytuscadaro]

Hi Freddd,
First of all I want to thank you from the bottom of my heart for your kindness in sharing this information to all those who have suffered with you over the past decades of our lives. For me it has been since the age of 12 and if I really think about it, since birth. I became bed ridden at age 24ish and I am going to be 50 in June. It does bring tears to the eyes to aknowledge the loss.
My great grandmother died of an unknown blood disease to me, in her late teens.
My first notable signs something was wrong were: at the age of 12, I barely had the energy to get to school often didn't and often left early from severe fatigue. I remember thinking how hard it was to get from one class to the next and wondered how all the other kids could?
At the age of 12, I also started to suffer from insomnia and I noticed I did not deal with stress well. I also started my menstrual cycle at the age of 12 but I don't think it showed up again until I was age 15 and then maybe two times per year and remained like that all through my life.
At the age of 15 my feet started to burn, I was exhausted all of the time and I noticed when I ate starchy foods they would just sit in my stomach.
At age 15 I noticed I could not eat very much or I would gain weight easily.
At age 15 I became bulemic this lasted for 5 years.
At age 16 I developed a cyst on my thyroid and was prescribed synthroid. I did not feel the pills helped me and stopped taking them.
Severe
I also became a vegetarian around this the age of 16 to the age of 26.
Fatigue persisted through the age of 22, shortness of breathe was common, intolerance to heat....etc
At age 22 I saw the thyroid specialist again and he re-prescribed me synthroid.
I had been on a very good diet since I felt so bad previous to taking the synthroid and this time it really helped.
I felt better than I had in years and I looked better too: my hair was shiny and thickened, my skin looked better my eyes were clear life was worth living! Then I went down hill and fast: in one years time I became bed ridden.
I had amalgams out about 8, at the time the decline started too. I had them out to be replaced with composite I had no idea they had something toxic in them, especially mercury, this was in the early 1980's.
During the year of the decine my hair fell out, my skin broke out and I had to leave a great job at boeing. I also saw a doctor at this time who gave me b12 shots for energy, I got worse. I could not get oxygen from the air I was breathing it seemed, I had seveer insomnia and could not sleep up to 3 days at a time.
It was also a strain to hold my head up and when I drove I would rest my head to one side. I finally left my job thinking if I could just sleep a month I could get well. I left my dream job never to return to it or any kind of a life.
I was told I had macrocytic anemia with "NO DETECABE BLOOD LEVELS OF B12", adrenal insufficiency and hashimottos thyroiditus. I was prescribed cyanocobalmin shots 1 every 3 days amongst other things.
I became worse and quit the shots after my blood levels of b12 shot up off the charts. I figured that my issues must not b12 from that point forward: I did not even consider that b12 was my issue because of this experience and because my high levels had peristed. I was Probably consuming a lot of cyano and folic acid from the numerous supplements I had been taking over the years as well. I also remember noticing that the cyanocobalamin shots cause me to be short of breathe over the years as well as hyroxyl b12 shots.
And on and on and on.
skip to present:
over the past 5 years since having the yaskow test done and finding out I had a snp in both of the mthfir she tests for as well as a cbs++ and many more snp's I started on Rich Vanks protocol and did not notice any benefit.
I also had deplin presribed for me and nothing.
I even had been prescribed methycobalmin shots but I never took them while on the methofolate and never got a repsonse.
This summer I was chelating on the Andrew Cutler protocol and I became so ill I could not even walk: to weak.
I am bed ridden and have been since the age of 24 mostly.
I felt I had done some real lasting damage on that protocol in my nervous system.......etc.
When I was on the Andrew Cutler protocol one good thing came of it: post started to pop up on " mthfr mutations. " I had disregarded these mutations since my NP and a doctor I had seen said they were meaningless. My holistic NP said if I took lagrer amounts of folic acid my body would convert all I needed and because I was not helped on Rich's protocol "
I started researching the mthfr snp's agian and finally happend upon Freddd and his wonderful posts.
This all makes such sense to me: no wonder the cyano and hyroxl only made me worse as well as I enver got anywhere with chelalation, only worse.

My blood test in the past are very similare here are some results from a test I had done this summer:
mcv 100.2 ref range 80-100
mch 34.1 ref range 27-33
red blood cell count 3.65 ref range 3.80-510
absolute lymphoctes 1711 ref range 850-3900.

I do not have a red beefy tongue?
My lips are dry and I have had the cracking in the corners of my mouth.
Hair sheds continuously
I am very pale
My feet burn every night but only at night when I am trying to fall asleep.
I will add a more complete list later.

Fredd I have been on your protocol about 4 weeks nd things are getting better:
I am new to this but first of all the symptoms it has helped:
I had about 2 nights that my feet did not burn and I did not have to put ice on them to fall asleep, I have been doing this for about 28 years.
The burning came back but I am hopeful it will eventually go away.
I have been able to fall asleep with out prescription meds.
I quit my antidepressant: " I have never been able to do that before. I was put on prozak it the 1980''s for energy, when I first started, it knocked me out at night and for two weeks I was out of it. After that I seem to work wonderfly but just for a coulple of months and then all benefit stopped but when I tried to quit it I would become so depressed I had to start it up again"
My digestion has improved.
I feel like I am gettting more oxygen
I have been able to get out of bed and to clean my house some.
My brain is working a little better
I am able to stand up longer, I have had trouble standing up for any length of time for years. I forget what they call it?
My liver is not aching and does not feel swollen like it has on and off for 25 years or so.
added on 12/19/2012: My sex drive is back.

Some of the start up effects I am feeling:
My neck is bothering me at times and so I take potassium. I use to relate the neck pain with my adrenals as my neck stopped hurting when I was prescribed hydro cortiosone.
I feel agitated at times but not so much more than usual.

I am so hopeful!!!!!!

I am taking large doses of methyl debencozide, methyl and metalfolin.
I need to understand dosing properly better; I have been wanting to make sure and supply enough and thought adding more would not hurt so I have been taking very high doses on level with Freddd.
I have a brother with bipolar and the other with a milder form of CFS than I, who also has liver firbrosis from hep C even though he did not do much to cause the disease to progress.
I have put them both on methyl and metafolin and I am giving bottles of the two away to many people I know who are much more mildly effected for Christmas.

I am currently taking 1 grain of armour a day and 25mcg of hydro cortisone spread out over the
day.

I will post as I see more improvement.
Thak you again Freddd, you have saved a lot of peoples lives. All that suffering has not been for nothing.

Pinky

 

[Crux]

Hi Pinkytuscadaro;

Yours is a very moving story. I'm so glad for you. Thank you for helping others along your path!

 

[Lotus97]

Now that I have done the testing let's get rid of the old idea that turning on healing was overdriving methylation. 100mcg of combined Adocbl aqnd Mecbl is enough to start normal healing in almost everybody within 3 days, no big doses needed, triggering a need for more L=Methylfolate and potassium. With the Large Gorilla, Adenosylcobalamin paper by Carmen Wheatley pointing out that it looks like the anti-inflammatory properties of AdoCbl are "RADICALLY" greater and more complete than Hycbl which leaves most inflamation in place. The difference so radical that she was hypothecizing that AdoCbl is the natural evolved preferred pathway and the reclaimed HyCbl is the starvation mode workaround.

What sort of testing did you do? Rich and Dr. Yasko have reviewed the test results of numerous individuals' methylation panels. The people who have had their methylation panels tested were taking many different combinations of folinic acid, methylfolate, methylcobalamin, adenosylcobalamin, hydroxocobalamin, TMG, etc.

 

[Freddd]

The tests that they use are normed on a chronicly deficient population with the study substances pervasive in the food supply that cause poor methylation and that is the "norm". They also have theories thay are trying to prove. They are committed to interpreting things in line with their theories, that work poorly at best. Treating to these test results works badly at best. That may very well be because the ranges are corrupt in a positive feedback cycle with the testing substances. You need to norm on a population that takes none of the investigational supplements that have no symptoms and no response to active b12s, l-methylfolate and l-carnitine fumarate. This would provide a norm that doesn't have chronic folate and b12 effects already in their bodies. This is part of the corruption of the system I'm talking about. The testing I did was a series of microtitrations with other people trying these things as I'm well past that point. Healing turned on quite suddenly at an estimated total absorbed dose of about 100mcg. At 10mcg in active transport, 1 in some unknown number that appears to be between 1:100 to 1:10,000 has healing turn on, and that has 50 years of research behind it. By 100mcg the first (shallowest) layer of healing turrns on. I don't know why the body applies it in to that layer first, possibly because epithelial cells are fastest dividing protecting us from the outseide world. The defective cells appear in days when methylation starts breaking down in this layer. All the tests are NORMED on a population in which b12/folate starvation is the NORM. They are asking the wrong questions of the wrong popualtion. So they know what test results show a chronically deficient population, not a genuinely healthy one. They population that would make an intersting norming are those who have healed of hundreds of symtpoms on the fully active protocol. Then they would know what test ranges produce helaing. Instead the tests serve to preserve chronic defiency states. These are logical and practical flaws in the norning process that happen with the unrecognized paradoxical folate deficiencies from folic acid that affects at least 20% and perhaps 50% of the "healthy college age" that Rich said was used in norming. Said folate deficiency causes b12 deficiency in practice for a number of reasons. The age of onset of FMS/CFS has moved down 20 years in the past 30 years. AdoCbl has almost nothing to do with methylation. MeCbl supplies methyl groups (CH4) at the rate of 1.3% of mass. So 100mcg of mb12 supplies 1.3mcg of CH4. That is insignificant as a methyl amount. Choline supplies so much more. L-methylfolate supplies so much more. TMG supplies so much more. MeCbl allows the transfers to take place. In any case HyCbl and CyCbl can be demostrated to work on as much as 1% of the full range of AdoCbl/MeCbl deficiency ymptoms becasue our body's can barely use them. They almost don't work at all and are a starvation mode workaround. Studying these lab mistake results for 60 years has caused the corruption of understanding of these things. CyCbl, HyCbl and folic acid DO NOT WORK AS A SYSTEM. If they did we wouldn't be having this discussion as everybody would already be healed or never developed these illnesses in the first place. The mistake was proven in 1959. Since then there has been much effort to make these pigs fly by looking for smaller and smaller microscopic evidence.

What do you call the 400 symptoms that HyCbl, CyCbl and folic acid don't work on and develop whether it is taken or not in almost everybody even if they wrok on 10 symptoms for 2/3 of people and none at all for 1/3? Not only do they not cure all these, these inactive supplements may even cause these disease in 999 out of 1000 people or somerthing like that. These supplements can't work at all without at least some of each of the deadlock quartet. Look at the dependencies. I traced these back at each level in peer reviewed research. Tracing these enzymes and biochemical chains is something that the reserach is good at. When the research say it takes an enzyme (not even going into how that is produced), ATP (AdoCbl, l-carntine fumarate and dependency on having methylation working) and a donated methyl group (SAM-e which results from MeCbl and l-methylfolate). Even being able to use HyCbl at all is 100% dependent on having all 4 of the deadlock quartet in the first place. If I were a betting man I would bet that HyCbl, CyCbl and folic acid will NOT produce major healing and win at least 999 out of 1000 times. I like better odds than that in the real life game of YOU BET YOUR LIFE. I did the inactive folate and inactive cobalamin thing for 30 years and it almost killed me. HyCbl, MeCbl and folic acid are not necessary or sufficient. MeCbl & AdoCbl & l-methylfolate & l-carnitine fumarate are all necessary and sufficient.

Honestly, I don't care what the answers are. I came here with some incorrect hypothesis and changed them as necessary. So, my descriptions have changed and now I know where the system went wrong. When everybody is wrong all sorts of hypotheses flourish that don't help at all becasue rhey are based on things that are incorrect. The system is complicated so where things go wrong wasn't apparant. What it boils down to I trust the natural evolution adapted vitamins rather than an artificial lab mistake which is the worst possible form of cobalamin for healing since it only barely works for some people. If Vit C worked as badly as CyCbl, HyCbl and folic acid everybody would be walking around with high level scurvy. If otehr b vitamins worked as badly we would all have pellagra nd beriberi too, chrnically, and they would be recognizwd as the "normal" condition. But since B1, B2, and other b factors and C all work at 100%, we have the chronic b12 and folate defciencies that have become normal.



What do you call the 400 symptoms that HyCbl, CyCbl and folic acid don't work on and develop whether it is taken or not in almost everybody even if they work on 10 symptoms for 2/3 of people and none at all for 1/3?

II would suggest that they are called FMS. ME, CFS, Parkinson's, ALS, MS, Supra Nuclear Palsy, Alzheimer's, autism and a bunch of others that haven't been identified yet that are not identified as b12 deficiency becasue of the idea that only MCV matters in that.

The combination of MeCbl, AdoCbl, L-methylfolate and L-carnitine fumarate reproduce the results of the "protein mystery factor" in liver extract which was fast and effective healing on hundreds of symptoms.

Fortunately they haven't made AdoCbl, MeCbl and l-methylfolate illegal yet and we can still do our comparisons and get well. It's a puzzle with various (zillions of possible combos) combinations of perhaps 20 factors determining exactly how things manifest; very complicated.

 

[Lotus97]

The tests that they use are normed on a chronicly deficient population with the study substances pervasive in the food supply that cause poor methylation and that is the "norm". They also have theories thay are trying to prove. They are committed to interpreting things in line with their theories, that work poorly at best. Treating to these test results works badly at best. That may very well be because the ranges are corrupt in a positive feedback cycle with the testing substances.

Are you referring to the methylation pathways panel from Health Diagnostics which Rich recommends? In the thread you started recently, THE STAGES OF METHYLATION AND HEALING, you say that you worked closely with Rich. What was your conversation about these tests?

 

[Skyline]

The testing I did was a series of microtitrations with other people trying these things as I'm well past that point.

This is not testing. This is self-experimentation with the only control being 'how you feel', which can be misleading with the ups and down of CFS, if not just very subjective in the first place.

Further up you said that "Now that I have done the testing let's get rid of the old idea that turning on healing was overdriving methylation".

If we can't be transparent and honest here, with objective data, we're only going to hurt ourselves and each other.

 

[Sparrow]

I have to agree with Skyline. I've been debating how to word this message, because I don't want you to take it too personally. It's not intended as an attack. I know that your intentions are good, but at best, this is an exceptionally small sample size with no objective measures of success. ...And that can make for some seriously flawed conclusions, no matter how convincing the results seem (just look at much of the psychobabble we're presented with). I don't think that's sufficient to entirely "get rid of" potential concerns, or to bush them off as obviously wrong. Overdriven methylation seems to have many symptoms in common with insufficiency as well as with what many of us classify as "sensitivity" to B12. I take some adB12 and methylB12 myself, but I also acknowledge that I can't actually tell for sure whether it's helping or hurting me in the quantities I take it in. We can guess, or strongly suspect, but we can't yet dismiss other possibilities.

I'm not saying that you're necessarily wrong. Just that there is not yet enough formal data to say that you are correct with that level of certainty, and I would want people to be making informed decisions. Claiming to have done "testing" that proves it may imply a more formal type of investigation to people who are reading. I think sometimes it's easy for casual readers to hear things like this and picture doctors and lab technicians and laboratory measurement of results rather than untrained patients taking little amounts and reporting whether or not they can feel anything. That can certainly be a useful guide too, but often comes with a different level of trust.

 

[LoriL]

I have a question. My doctor asked me to start taking B12 because I am low normal. I felt physically better taking it, but it flares my rosacea quite severely. I do have a nickle allergy which could explain the issue with the cobalt with the B12. I was dx with CFS/FMS many years ago. I do quite well with my supplement regiment but without it not so good.

I just ran my DNA raw data through Genetic Genie and I have multiple Methylation DNA mutations including the following:

COMT V158M AG (+/-)
COMT H62H CT (+/-)
VDR BSM TT (+/+)
MAO A R297R GG (+/+)
MTHFR 03 P39P AG (+/-)
MTHFR A2398C GG (+/+)
MTRR A66G AG (+/-)
MTRR A664G AA (+/+)
CBS C669T AG (+/-)
CBS A360A AG (+/-)
SHMT 1 C1420T AG (+/-)

I'm not sure what that all means, but I know that I do have issues with B12 in spite of a good diet and it's possible that I am allergic to the common formulas. Any suggestions for getting some B12 into me? My doctor says that the shots would be worse. My mother, 20 years my senior, has been dx with pernicious anemia since she was my age. My other blood labs are fine however.

Thanks for any help.

Lori

 

[Freddd]

I have a question. My doctor asked me to start taking B12 because I am low normal. I felt physically better taking it, but it flares my rosacea quite severely. I do have a nickle allergy which could explain the issue with the cobalt with the B12. I was dx with CFS/FMS many years ago. I do quite well with my supplement regiment but without it not so good.

I just ran my DNA raw data through Genetic Genie and I have multiple Methylation DNA mutations including the following:

COMT V158M AG (+/-)
COMT H62H CT (+/-)
VDR BSM TT (+/+)
MAO A R297R GG (+/+)
MTHFR 03 P39P AG (+/-)
MTHFR A2398C GG (+/+)
MTRR A66G AG (+/-)
MTRR A664G AA (+/+)
CBS C669T AG (+/-)
CBS A360A AG (+/-)
SHMT 1 C1420T AG (+/-)

I'm not sure what that all means, but I know that I do have issues with B12 in spite of a good diet and it's possible that I am allergic to the common formulas. Any suggestions for getting some B12 into me? My doctor says that the shots would be worse. My mother, 20 years my senior, has been dx with pernicious anemia since she was my age. My other blood labs are fine however.

Thanks for any help.

Lori

Hi LoriL.,

Cobalt, in the cobalamin molecule has no more relation to reactions to metallic cobalt than sodium chloride has to reactions to sodium metal. You can put salt on your food without it bursting into flames.

This is a completely irrelevant issue to getting b12 into a person. You have cobalt contained in b12 in every cell in your body that has mitochondria. Now people have bad reactions to some injections of CyCbl and some of HyCbl. The HyCbl can cause acne like lesions in 24 hours following injection as well as a variety of skin problems almost identical to those caused by partial methylation block caused by folic acid. Some commercial injections have preservatives and other factors that can cause reactions. Even the purest of MeCbl or AdoCbl exposed to light and subject to very rapid photolytic deterioration, decomposes to HyCbl that exists in an equilibrium reaction with AquaCbl. HyCbl itself causes the lesions and rashes due to induced partial methylation block whatever form it is in. CyCbl releases small quantities of cyanide that is neutralized by combining with another cobalamin turning it into CyCbl, just the way it was started with. There doesn't seem top be much of a gain in that. There isn't.

The commercial tablets and capsules all are mostly filler. The ingredients are all listed. If you have known problems with ingredients you can always have a compounding pharmacy make some B12 suckers with nothing you are sensitive to. The Enzymatic Therapy MeCbl and Country Life Methyl B12 are 5 star MeCbl products that work well. The Anabol Naturals Dibencoplex (AdoCbl) is also a 5 star very effective product. The most common side effects of these effective active B12 is the start of methylation and induced deficiencies of other things