A little help with test results...

[PeterPositive]

Hello,
I have been reading lots of material in this forum and the related resources, did a full immersion in the Dr.Lynch videos and Yasko material but this is quite an intricate subject and I would appreciate a little help from you guys, when you have time.

Attached is the genetic-genie report extracted from the 23andMe results. First thing I noticed is the MTHFR C677T +/+ which would explain the high Hcy levels: 3 years ago my Hcy was ~100μmol/L now it is stuck at ~13, but I've been taking a supplement that has all active Bs with the exception of folate which is the usual folic acid.

What would be the proper "target" dose of methyl folate? Currently I am taking 400mcg and I have no problems.
Also can I safely add folinic acid for the SHMT problem? As far as I understand it only folic acid is bad.

Do you have any other recommendations given the results?

Thanks in advance.
Hope to be able to return the favor when I'll bemore experienced with all these many variables

 

[Helen]

Hi @PeterPositive ,
Rich Van Konynenburg recommended 400 mcg of folates (but half of it as folinic acid that is supposed to function as a reserve that the body can pick up and convert from). Maybe dr Ben Lynch would go higher when you are homozygote ( MTHFRC677T ++). Heartfixer is another good source to read.

But you surely need vitamin B12 in rather high dose to compensate for your MTR and MTRR mutations. Some feel bad on methylcobalamin /MCbl because of the COMT mutations, and taking too much of methyl donors, but it might be worth a try to start with the most effective Cbl. I have got more COMT mutations than you have, and never felt bad on MCbl injections that I take every second day.
Have some niacin (also has to be methylated) ready to decrease the methylation if you would feel bad. MCbl hasn´t to be methylated as HydroxyCbl. I recommend reading posts from Rich Van Konynenburg who researched a lot in methylation issues, and he also posted in many discussions here with help to people in trouble or with questions. Go slow, and be prepared as you might feel bad when the methylation starts when you take both methyl folate and B12 together. Also be aware of a potassium deficiency that can show up after the methylation is unblocked. There are threads about that too in the forum.

I would also recommend checking the detox panel with help from GeneticGenie. It is also useful with bad or good information.

Hope you will be one of us that feel much better with extra B12 and folate.

PS There is a post from Richvank with possible issues that might affect you negatively when you start a methylation protocol (lack of co-factors, to mention one of them)

 

[PeterPositive]

Hi Helen,
thank you very much for your comments.
I have already been taking active B12s, both methyl-b12 and adenosyl-b12 and did not find big issues with them.

I did have some mild reaction when I started, so I built the dose gradually and I usually take between 500 and 1000mcg a day. Never pushed it higher than that. After almost 2 years of supplementation my B12 is a bit too high (~990) so I am now just taking a couple of doses per week.

Given the MTR/MTRR mutations should I disregard the high serum levels?

One more thing, is SAMe okay for my situation? My doctor added 200mg of SAMe as an extra methylation help, but it hasn't helped with the symptoms and high Hcy.

Cheers

 

[Helen]

@PeterPositive

I edited my answer while you where answering too, so maybe some new information to you.

Your daily dose of B12 is way too low. At least 2000 mcg of MCbl has been proven to be the base (see richvank). Yasko "prescribed" 25 mg a day to a friend with ME/CFS for a long period to "saturate the tissues". My injections are 10 mg. If you swallow the dose you have to have intrinsic factor to make use of it. Maybe you have taken other forms?

I think the AdCbl is only working in the Kreb´s cycle- but I am not yet sure of that.

You don´t have to care about the labvalue for cobalamin. I am lucky to have two really good B12 doctors/researchers as friends... Some people know they have to be around 4-5000 to feel good! The high value might be a sign of bad ability to make use of the B12 due to reduced MTHFR enzymes. So yes, I would disregard the serum levels of B12. Unfortunately there are no valid labtests for B12 today. They might show positive, but not sure.

I have no idea of SAME supplementation or not. There are threads for ideas of that too. I followed Richvank´s protocol but ended up with Lyme that probably takes care of a lot of my glutathione so far.

I guess your homocysteine level will change when you take a lot more B12, daily . Could you ask your doctor for a trial with MCbl injections?

 

[PeterPositive]

Thanks again. It's very clear.
I am using sublingual Methyl-B12 to avoid the digestive tract which is indeed troubled. I am quite sure my stomach alone wouldn't be able to produce enough intrinsic factor.

As regards the dosages, I will try to slowly build up my dosage. Is there any risk that continuous high B12 supplementation might cause imbalances with other Bs? I see Dr. Lynch is usually cautious with megadoses and suggests to keep an eye on imbalances.

You don´t have to care about the labvalue for cobalamin. I am lucky to have two really good B12 doctors/researchers as friends... Some people know they have to be around 4-5000 to feel good!

Thanks. Yeah, the ability to find a doctor with a good experience in this field is an adventure

I would also recommend checking the detox panel with help from GeneticGenie. It is also useful with bad or good information.

I checked the panel but, as a difference from the methylation one, it doesn't provide any details about all those SNPs so I have no idea where to look. Is there any resource on that? Maybe Yasko? I am still reading her material.

Cheers

 

[Helen]

As regards the dosages, I will try to slowly build up my dosage. Is there any risk that continuous high B12 supplementation might cause imbalances with other Bs? I see Dr. Lynch is usually cautious with megadoses and suggests to keep an eye on imbalances.
...
I checked the panel but, as a difference from the methylation one, it doesn't provide any details about all those SNPs so I have no idea where to look. Is there any resource on that? Maybe Yasko? I am still reading her material.

Cheers

I have listened to B12 experts for 20 years and the message is that high doses of HCbl or MCbl are totally safe. Rich raised a question about MCbl and mercury load from amalgam fillings, vaccines etc. There are no ways to check imbalances in vitamin B´s today so it is just theoretically.

You can get some information from this sample and the comments http://www.gdx.net/core/sample-reports/Detoxi-Genomics-Sample-Report.pdf. Listen to the seminar that richvank had in Sweden and you will learn even more. No, Yasko doesen´t work with this test. If you post your detox panel I can try to give some comments on it.

 

[PeterPositive]

Thanks again Helen, it is much appreciated
Ok, so here's the detox panel:

I will check the seminar in the next days... my brain is being overloaded with acronyms! Maybe it's a good exercise for the grey cells

Thanks

 

[Freddd]

Hi PeterPositive,

I think you are a thinking that the state of the art in interpreting the meaning of various test is more advance than it is. The testing protocol and serum limits for cobalamin were based on saving people's lives from pernicious anemia and excluding everybody else. There is not the slightest idea of "optimum" or good health in any of that.

The genetic testing, trying to treat to theory by genes so far shows little indication of working in terms of b12 and folates. Consider too that "normal" rates for maintenance might be much lower than what is needed for substantial healing.

 

[Helen]

Hi PeterPositive,
...The genetic testing, trying to treat to theory by genes so far shows little indication of working in terms of b12 and folates. Consider too that "normal" rates for maintenance might be much lower than what is needed for substantial healing.

Hi Freddd,

I am surprised to read the statement in the first sentence. ..."so far shows little indication of working in terms of b12 and folates". Could you please explain what you mean by this?

 

[Freddd]

Hi Freddd,

I am surprised to read the statement in the first sentence. ..."so far shows little indication of working in terms of b12 and folates". Could you please explain what you mean by this?

Before FMS onset following a car wreck I had been sick a lot all my life and had, in retrospect a continuum of symptoms from infancy. I have had FMS since about 1978, post traumatic injury. I had to change my occupation by 1981 because of impingement on my abilities. I got clobbered by CFS in 1987. So I have been at this for decades. There were then and are now practitioners who think "all we have to do is treat them until the numbers are right". That includes all sorts of B12 and folate tests. If the genetic tests actually worked for pin-pointing the therapy that heals without side effects, startup effects and induced deficiencies, where are all these people? Where are all the significantly healing or healed people from these gene based protocols.? There isn't a b12 test that hasn't had a peer reviewed journal article posted explaining just why the test couldn't convey sufficiency. As to the folate, yes they are finding a bunch of variations. So what do the genes mean in terms of the types of paradoxical folate deficiencies? Which genes indicate LCF is required instead of ALCAR? Which genes control flow of cobalamins into the cerebral spinal fluid? These would all tell us things useful in treating us effectively.

Even worse now is that the tests, at least in the USA and some other vitaminized countries, are corrupted by having folic acid, HyCbl and CyCbl in the food supply and vitamin supply. So now an unknown number of tests are affected by the MeCbl and AdoCbl diseases and normed on a chronically deficient population. An example was my own MCV, mean corpuscular volume. Its how big your red blood cells are. First alert back in the old days was MCV>93 and serious trouble at MCV>100. Now first warning can be as high as MCV>102. My internist congratulated me on getting my MCV down below alert. We checked the numbers and found out my MCV hadn't changed, just the "range". Other things have to change too as it affects much of the blood tests and many other test in unknown ways. It can cause abnormal cells in PAP tests.

 

[Valentijn]

I am surprised to read the statement in the first sentence. ..."so far shows little indication of working in terms of b12 and folates". Could you please explain what you mean by this?

Agreed ... testing confirmed that I need B12 due to a homozygous missense mutation meaning that I need to produce 3-4 times as much methylB12 in order to rececycle MTR and produce methionine at a normal rate. And it also showed that I have no problem with converting folic acid into methylfolate, so I can use the cheap stuff

 

[Freddd]

Agreed ... testing confirmed that I need B12 due to a homozygous missense mutation meaning that I need to produce 3-4 times as much methylB12 in order to rececycle MTR and produce methionine at a normal rate. And it also showed that I have no problem with converting folic acid into methylfolate, so I can use the cheap stuff

Hi Valentijn,

And those have helped you a little? a lot? miraculously? not at all? And have you compared folic acid to L-methylfolate to see if it works better for you in any way. The maximum a "normal" (50%) folate person can convert daily is in the 800-1000mcg daily range. We appear to actually need more folate than that maximum convertible amount, in any case and it has to be other than folic or folinic acid. I'd be interested in hearing how it works out for you. It might be interesting to keep a daily diary during the first months so changes are visible. Good luck.

 

[Valentijn]

The maximum a "normal" (50%) folate person can convert daily is in the 800-1000mcg daily range. We appear to actually need more folate than that maximum convertible amount, in any case and it has to be other than folic or folinic acid.

Sorry, I'm confused. Are you saying that people with the best possible genes for producing methylfolate still aren't producing enough of it and are somehow unhealthy because of it? Assuming a diet involving decent vegetable intake.

When I had a three-week numbness in one side of my body, folic acid worked extremely well in ending it.

 

[Helen]

Before FMS onset following a car wreck I had been sick a lot all my life and had, in retrospect a continuum of symptoms from infancy. I have had FMS since about 1978, post traumatic injury. I had to change my occupation by 1981 because of impingement on my abilities. I got clobbered by CFS in 1987. So I have been at this for decades. There were then and are now practitioners who think "all we have to do is treat them until the numbers are right". That includes all sorts of B12 and folate tests. If the genetic tests actually worked for pin-pointing the therapy that heals without side effects, startup effects and induced deficiencies, where are all these people? Where are all the significantly healing or healed people from these gene based protocols.? There isn't a b12 test that hasn't had a peer reviewed journal article posted explaining just why the test couldn't convey sufficiency. As to the folate, yes they are finding a bunch of variations. So what do the genes mean in terms of the types of paradoxical folate deficiencies? Which genes indicate LCF is required instead of ALCAR? Which genes control flow of cobalamins into the cerebral spinal fluid? These would all tell us things useful in treating us effectively.

Even worse now is that the tests, at least in the USA and some other vitaminized countries, are corrupted by having folic acid, HyCbl and CyCbl in the food supply and vitamin supply. So now an unknown number of tests are affected by the MeCbl and AdoCbl diseases and normed on a chronically deficient population. An example was my own MCV, mean corpuscular volume. Its how big your red blood cells are. First alert back in the old days was MCV>93 and serious trouble at MCV>100. Now first warning can be as high as MCV>102. My internist congratulated me on getting my MCV down below alert. We checked the numbers and found out my MCV hadn't changed, just the "range". Other things have to change too as it affects much of the blood tests and many other test in unknown ways. It can cause abnormal cells in PAP tests.

You also wrote: "The genetic testing, trying to treat to theory by genes so far shows little indication of working in terms of b12 and folates"

I still don´t agree. Of course it doesn´t determine the doses or the chemical reactions in a persons body, but at least it is important facts if you have polymorphisms in particularly the MTHFR and/or the MTR/MTRR SNP´s.

The more facts, the less trial and errors (though trial and errors also is a possible way of treating).Also doctors takes these gene test results seriously so that you can get MCbl injections if you need higher doses. Gene test results predicts a possible need for a supplement, but of course not the doses or cross-reactions that might occur.

After looking at all the test results presented here during the last years I think one thing that we, in this forum, do have in common are the above mentioned mutations. A decreased methylation, that for us probably have been a consequence, makes us vulnerable to infections, intoxications (esp by mercury and mold), allergies, gut problems, hormonal abnormalities, nerve problems and almost whatever is possible to go wrong in the body due to a glutathione deficiency. This was the hypothesis by Richvank and so far it hasn´t been proved wrong. Everyone has to do his/her own journey trying to get the optimal levels of B12 and folate-s and co-factors, and surely gene testing is a valuable, but not absolute necessary, help on the way.

 

[PeterPositive]

Thanks Helen.
In the light of what you just posted, would a methylation panel help to determine the optimal dosage of methyl-folate, for example?

For the past two years I have been using mostly folic acid, only recently I have switched to a 400mcg dose of L-Methyl-Folate. In the case of people with C677T +/+ (like me) it's not entirely clear how much folate would be necessary to get back to a decent equilibrium.

Currently I am looking at three parameters:

1 - Tolerance ... of course. Building it up slowly.
2 - Hcy levels. Currently still too high
3 - G.I. absorption... this is the most unpredictable variable for many people, I guess because of GI issues and I have lots them. They are actually the dominant symptom.

The most "funny" part about the GI issues is that nothing significant comes out of regular tests... no GI inflammation markers, no dysbiotic flora, no trace of yeasts. there's a mild "positive" flora imbalance, very low IgA and presence of Blastocytis Hominis.

With these 3 params + the unknown remaining ability of my MTHFR enzyme to do his work, I still feel like I am walking around blindfolded.

If you guys have any advice I am all ears

Thanks again.
Peter

 

[Helen]

@PeterPositive

No, a methylation panel doesn´t give that information (as almost no labtest does). Did you see a sample of a that was posted here? There are some, and an interpretation manual written by Rich. The analyses though are made/done(?) in red blood cells so it is supposed to be more valid tahn other e.g folate analysis.

About maximum dosing for being homozygote MTHFRC677T I would check Dr. Ben Lynch who is experineced.

ad 2. Did you get a high dose B12 too before checking HCy? I have been told that it takes about three months to treat a B12 deficiency. And it takes the two (folate+B12) to get the methylation going. According to your low dose B12 (max 1000 mcg) that you wrote in a post you probably will get much better when you increase your MCbl to at least 2000 mcg. I favour injections with 10 mg! People I know have had miraculous positiv reactions to just one injection. With injections , spray or sublingual B12 you bypass the problem with uptake.

Maybe your G.I. problems will resolve when you get enough B12 and a proper methylation. They are both crucial for the G.I. tract.

 

[PeterPositive]

Thanks Helen,

ad 2. Did you get a high dose B12 too before checking HCy? I have been told that it takes about three months to treat a B12 deficiency. And it takes the two (folate+B12) to get the methylation going.

I've been taking moderate quantities of Bs for 8 months bringing down Hcy from ~100 to ~13, then got stuck and the doctor gave me additional SAMe which didn't help and TMG which I didn't tolerate and stopped almost immediately.

Of course the folate I have been taking was regular folic acid which didn't do anything

According to your low dose B12 (max 1000 mcg) that you wrote in a post you probablya will get much better when you increase your MCbl to at least 2000 mcg. I favour injections with 10 mg! People I know have had miraculous positiv reactions to just one injection. With injections , spray or sublingual B12 you bypass the problem with uptake.

Given the MTR / MTRR problem I will try to gradually augment the dose. As others in this forum I find Methyl-B12 to give a jittery feeling often times, with a 1g dose. That's why I never pushed higher than that. Adenosyl-B12 is more friendly to me

Maybe I can double the dose by taking 1g of both as I see in many products including Dr.Lynch's formulas.

Cheers