Tired of trying to solve methylation probs

[Tashy32]

Hi,

I am having real difficulties getting to the bottom of my methylation problems and have not been able to find a doctor anywhere (in the UK) who knows anything much about epigenetics or methylation issues (tried Sarah Myhill but she isnt taking patients anymore).

The Yasko methylation test revealed the following mutations:

- CBS A360A++
- MTRR A66G++
- MAO A/R297R++

And a host of other more minor mutations (incl. BHMT (1,2,4, 8) +/-, VDR Taq1 & Fok1 +/-)

My Genova Metabolic Analysis revealed deficiencies in B12, folic acid, B2 and B6 (the last one was wierd because a recent blood test suggested my B6 levels are high!).

I have tried taking the above vitamins and the B6 and B2 broke my skin out (a common reaction in me) and the folic acid made me feel very down and depressed I have tried so many things to detox in the past but i react very badly and often suffer from skin outbreaks.

Despite what some say on this forum, i think the CBS mutation is a problem for me. I have had plenty of allergic reactions to sulphates and medication in the past although dont have too many problems with eggs and broccoli. From all the reading i have done, i think i am definitely an over methylator although my homocysteine levels have never been checked!

I have just ordered a hair and mineral test to check my sulphur and lithium levels, but am really wondering whether i have to spend yet more money on getting my amino acids tested to get to the bottom of all of this!

Am curious to know if anyone has had any success with dealing with the CBS mutation using the Yasko supplements?

PS. I forgot to mention that I also react badly to Vit D, essential fatty acids....always break out in acne with these things!

 

[Al Klein]

I dont have anything to say that will directly help you, just that I too am in the UK and have similar polymorphisms. homo for :

COMT V158M & H62H
VDR taq
MAo-A
MTRR A66G
CBS C699

I have hashimotos thyroiditis and pernicious anemia, and have found taking daily B12 and folate has helped.
I am about to do the Genova Nutreval test, as well as assessing my vitamin/mineral status I note that it does Homocysteine and Methylmalonic acid, both indicators for B12

Did you do the blood test through Dr Myhill and get her to comment on it?

I see you dont mention MTHFR, and I am negative for all of them, but I do see on MTHFR.support website that they do have one doctor in the UK
http://www.mthfrsupport.com/practitioner-2/europe/uk/

Finally - have you tried the Better You vitamin D oral spray?

Good Luck

 

[Tashy32]

Yes i should get my homocysteine levels checked as if i am right about being an over methylator then i should have quite low levels.

Thanks for the link to the UK doctor, surprising isnt it that there aren't more people who focus on this given that in 50% of CFS cases methylation is a real issue! I didnt get Sarah Myhill to comment on my Metabolic Analysis test, maybe i should have paid the extra for this....i now also see that on the Amino Acid test, many of the same markers are tested, so am beginning to think it was a slight waste of money!

Unfortunately, I didn't do well on folate at all, it made me quite down and anxious. Which form of B12 are you taking? Methylcol or Hydrox?

And what are the ingredients of the Better You Vit D spray and where can i source it from? The Yasko research team told me that if Vit D is combined with rosemary it is better tolerated.

Thanks for your help anyway.

 

[Al Klein]

As I have Pernicious anemia I get a hydroxy shot every 8 weeks from the GP, but for the past 9 weeks I have been also doing my own, weekly, plus taking Enzymatic Therapy most days. just added in some adonosyl, couple times a week

I use this vitamin D
http://www.betteryou.uk.com/DLux3000

 

[Valentijn]

Tashy32
MTRR A66G being homozygous means that your MTRR enzyme is pretty ineffective, and you need 3-4 times the normal amount of MTRR to keep things functioning at a normal rate. This could be causing some of your other B vitamins to have problems, or to cause problems when you start supplementing them if the B12 problem hasn't been dealt with yet.

So first and foremost, you probably need to get your B12 levels sorted. HydroxoB12 is pretty safe to take in high doses, and is definitely available in Europe, though maybe not so much in the UK. If that doesn't work, you might want to try methylB12, though may need to be more careful with that and keep a close eye on potassium levels.

It might be a bad idea to take B6 at this point, since that can encourage homocysteine to be disposed of via the cystathionine pathway, which could be diverting it from being used via MTRR.

 

[Al Klein]

Tashy32
I can tell you where to get hydroxyB12 if you want to self inject, and where the facebook group is for lots of info and support. What was your B12 level?

 

[caledonia]

Hi,

I am having real difficulties getting to the bottom of my methylation problems and have not been able to find a doctor anywhere (in the UK) who knows anything much about epigenetics or methylation issues (tried Sarah Myhill but she isnt taking patients anymore).

The Yasko methylation test revealed the following mutations:

- CBS A360A++
- MTRR A66G++
- MAO A/R297R++

And a host of other more minor mutations (incl. BHMT (1,2,4, 8) +/-, VDR Taq1 & Fok1 +/-)

My Genova Metabolic Analysis revealed deficiencies in B12, folic acid, B2 and B6 (the last one was wierd because a recent blood test suggested my B6 levels are high!).

I have tried taking the above vitamins and the B6 and B2 broke my skin out (a common reaction in me) and the folic acid made me feel very down and depressed I have tried so many things to detox in the past but i react very badly and often suffer from skin outbreaks.

Despite what some say on this forum, i think the CBS mutation is a problem for me. I have had plenty of allergic reactions to sulphates and medication in the past although dont have too many problems with eggs and broccoli. From all the reading i have done, i think i am definitely an over methylator although my homocysteine levels have never been checked!

I have just ordered a hair and mineral test to check my sulphur and lithium levels, but am really wondering whether i have to spend yet more money on getting my amino acids tested to get to the bottom of all of this!

Am curious to know if anyone has had any success with dealing with the CBS mutation using the Yasko supplements?

PS. I forgot to mention that I also react badly to Vit D, essential fatty acids....always break out in acne with these things!

You don't have MTHFR so you may not need folate supplementation. I would suspect heavy metal involvement especially mercury and lead, as those can mess up MTHFR and MTR the same as if you had mutations there.

The depression from the folic acid could possibly be metal detox. Are you taking synthetic folic acid or folate? Technically, without an MTHFR mutation, folic acid should be ok.

The CBS + BHMTs could cause CBS issues, even though the CBS is the minor one.

The MTRR mutation (B12 recycling) requires more B12.

Have you done any metal testing? How is your gut function? Do you have leaky gut, candida or other gut problems? Done any stool testing?

You sound very sensitive - starting low and going slow will be key. This means not taking full pills. Start with a fraction of a dose, say 1/8 of a pill. That way, if you're going to have an adverse reaction, it will only be 1/8 as bad.

Start with one supplement at a time and be on it several days before adding something new. Start a symptom journal and note what you start and when, what dose, and any reaction good or bad.

If you take something that causes metal detox, you may have to allow several days between doses to allow the metals to clear.

I suggest learning self muscle testing so you can test what is good or bad, and what dose to take before you actually take it. This has been invaluable for me. There are lots of videos on Youtube on how to do this.

You don't need the Yasko supplements to be successful with CBS, or at least I didn't.

 

[Beyond]

Mthfrsupport.com has a small list of practicioners that are knowledgeable with this stuff.
One of them is in the UK: http://www.mthfrsupport.com/practitioner-2/europe/uk/

 

[UM MAN]

To find out if your CBS is up regulated, use the urine sulphate test strips.
If your are expressing CBS, I would not refer to this as OVER METHYLATED.
In fact I would think you would be UNDER METHYLATED, because you would be
low on homocysteine and not be able to recycle it into SAM.

 

[Critterina]

Hi,

- CBS A360A++
- MTRR A66G++
- MAO A/R297R++

And a host of other more minor mutations (incl. BHMT (1,2,4, 8) +/-, VDR Taq1 & Fok1 +/-)

My Genova Metabolic Analysis revealed deficiencies in B12, folic acid, B2 and B6 (the last one was wierd because a recent blood test suggested my B6 levels are high!).

/quote]
Hi Tashy,

For me, getting the amino acid analysis done was very much worth it. Homocysteine wasn't a separate test, but I would add it so that you KNOW better what's going on.

Sulphur problems can be caused by SUOX mutations. You might look into them, or just do a low sulfur diet and see if you feel wonderfully better. Because it eliminates so many things (meat, gluten, dairy, eggs, soy) all at the same time, if it doesn't improve you, it's likely none of those things are a main problem. I bought the test strips - some peace of mind but a big waste of money in my case.

I agree with Valentijn that your major methylation problem is probably going to be a need for B12. MethylB12 may or may not be tolerated because of your MAO; if it doesn't work for you, you can try hydroxyB12. Face breakouts can be an indication of methylfolate deficiency - and when you have enough B12, you will be using up methylfolate faster than you would be without it. Remember, B12 is best sublingual and methylfolate is best on an empty stomach, and small doses slowly increased help you find your limits without big unhappy surprises.

Wish you the best!

 

[Tashy32]

Thanks so much everyone for all your helpful responses!

On the Metabolic Analysis Test it simply stated that my B12 levels were borderline and my folic Acid was severely deficient.

Al Klein: Where can i source the self inject HydroxoB12? I dont particularly like the sound of self injecting, perhaps i would be better taking it sublingually...

Or are there any particular brands of HydroxoB12 which people would recommend?

The hair and mineral test i have done will check whether i have any toxic metals - yes i think this could well be an issue.

My gut function used to be an issue years ago - i was told i had leaky gut and some bad bacteria after doing a Genova Comprehensive Digestive Stool test. After taking lots of probiotics i think i have improved my digestion quite a bit. Having said this, on my recent Metabolic Test it said that i should take digestive enzymes and probiotics as my levels were borderline (but not in high need).

Very interesting to self muscle test supplements - i will definitely look into this!

Where can i source the urine sulphate strips? i checked on Amazon as a previous poster had mentioned this, but i couldn't find ones which would show up sulphur levels.

I had no idea that a deficiency in methylfolate can cause skin breakouts, very interesting! Could this also be why i break out after taking essential fatty acids and Vit D?

After researching over and under methylation, for some reason i seemed to think i am an over methylator. I guess a homocysteine test would confirm this and that the CBS mutation does not necessarily confirm this?

Many thanks again for all your help.

 

[Al Klein]

I believe you need the sulfate strips
http://www.camlab.co.uk/quantofix-test-strips-p14537.aspx

although if you pm me your adress I could send you a few as I dont think ill use them all

I got first hydroxo jabs through GP (IM) and then bought from Germany (I do subcut):

Depot-Rotexmedica 10 Amp. 0.958 mg 10x1ml Ampullen

There is a Pernicious Anemia facebook group that is supportive to self injectors.

Can we get hydroxyB12 sublinguals??

 

[Tashy32]

Al Klein: Many thanks for offering to send the sulphate strips. I have just sent you my address

Germany is so much more progressive i think. Do you order from a particular website?

I visited the Austrian Mayr clinic (www.viva-mayr.com) last year and felt amazing after spending 10 days there, the IV vitamin infusions really helped me (perhaps that is what boosted my B12 levels) and i have not been able to find many people in the UK or in Europe who offer these treatments (I am currently working out in the Netherlands on a project at the moment).

I think it is possible to get hydroxyB12 sublinguals - i have a feeling the Nutricentre (UK) stocks this.

 

[Al Klein]

Goldpharma for the hydroxo. Make sure its the Depot-Rotexmedica

 

[Freddd]

I know there is some belief in so-called "muscle testing". I have seen people do quite a bit of it and get utterly ridiculous results. Interestingly they almost always picked the least effective worst b12 and so on. I have never seen anybody get it right. When you don't get better in a year or 10 with such choices trying some critical thinking might help. I stand 100% with the entire medical industry on this. I'm a practicing mystic and I just can't swallow this one. I practice mysticism at least as precisely as I do anything else.

Using the guidance of muscle testing how many are healed and rehabilitated? Any? Of course compared to Detox theory and other such it might come out looking pretty good or at least not have to "put up" with years of "detox".

The big problem with HyCbl is that it hardly works at all and a person can have 10x as many B12 deficiency symptoms worsening than are improving. Generally, people who have been on HyCbl or CyCbl have far more intense and worse startup on MeCbl and AdoCbl when they finally try it than if they had never taken the HyCbl. It makes for exhausted methylators.

 

[Critterina]

Muscle testing has never worked on me. It's a chicken-and-egg problem for me now: do I not believe in it because it does not work, or does it not work because I don't believe in it?

 

[Tashy32]

I am not aware of the research which shows that MeCbl is more effective than HyCbl, all i do know is that many people on this forum have stated that they can't tolerate MeCbl and have found had greater success with HyCbl.

I am undecided about muscle testing, I agree that it is clearly not very scientific and should be used with caution.

One thing i didn't mention this much in my earlier post is that i still have the terrible nerve pain in my leg after taking the Vit B6. Basically the MAP test i did a few weeks ago with Genova Labs indicated i had a deficiency and i took a bit of B6 a few weeks ago. A few days after taking this, I developed a sharp pain (nerve) in my right leg. After going to my doctor and getting my Vit B6 levels checked (in serum), i have now discovered they are in fact high (above the range)!!! I can't believe it and am now wondering how reliable the Genova test is?? I may post this on a separate thread as the leg pain is quite bad and is showing no signs of going away

 

[Freddd]

I am not aware of the research which shows that MeCbl is more effective than HyCbl, all i do know is that many people on this forum have stated that they can't tolerate MeCbl and have found had greater success with HyCbl.

I am undecided about muscle testing, I agree that it is clearly not very scientific and should be used with caution.

One thing i didn't mention this much in my earlier post is that i still have the terrible nerve pain in my leg after taking the Vit B6. Basically the MAP test i did a few weeks ago with Genova Labs indicated i had a deficiency and i took a bit of B6 a few weeks ago. A few days after taking this, I developed a sharp pain (nerve) in my right leg. After going to my doctor and getting my Vit B6 levels checked (in serum), i have now discovered they are in fact high (above the range)!!! I can't believe it and am now wondering how reliable the Genova test is?? I may post this on a separate thread as the leg pain is quite bad and is showing no signs of going away

Hi Tashy32,

stated that they can't tolerate MeCbl

Yes. The side effects usually would get anybody actually starting to heal out of the study rather than figuring out what causes the various groups of effects because they considered them side effects instead of B12 rather than effects of induced deficiencies despite warning of those. So official b12 (HyCbl and CyCbl) is remarkably ineffective as that was what was selected for in research. MeCbl was too effective combined with whatever they were doing. Most of the responses people have are induced deficiencies, some of which can be dangerous or fatal if ignored and continued. The MeCbl makes some of the other vitamins far more effective. Some of them become so extremely more effective that they overdrive parts of the system like at least B1, B2 and B3, CoQ10 at the beginning, Biotin in relation to AdoCbl/L-carnitine fumarate and lots of other things. Sometimes it is just too complicated to figure out 30 variable relationships and balances. Combinations are as critical as single items.

 

[Valentijn]

Yes. The side effects usually would get anybody actually starting to heal out of the study rather than figuring out what causes the various groups of effects because they considered them side effects instead of B12 rather than effects of induced deficiencies despite warning of those.

So once again, the treatment is never wrong, it's just patients who must be misinterpreting their "side-effects".

Just like CBT/GET!

 

[Freddd]

So once again, the treatment is never wrong, it's just patients who must be misinterpreting their "side-effects".

Just like CBT/GET!

Hi Valentijn,

So once again, the treatment is never wrong, it's just patients who must be misinterpreting their "side-effects"

You are certainly showing how you think here. This had nothing at all to do with patients interpreting anything. This is all about how the doctors and the AMA, the "system, made it near impossible for anybody to be healed by b12 of any kind and even to acknowledge that sometimes b12 can work. The AMA was threatening to prosecute, or persecute the doctors who continued to treat patients with B12 merely because the patients claimed benefit. The doctors were not allowed to listen to the patients if they clamed benefit. They were intent on proving that b12 treated ONLY pernicious anemia, and nothing else, and that it had to be detected by tests to control the doctors' proclivity to over drug the patients. Those who don't know history are condemned to repeat it. It was the McCarthy period of medicine. There were quacks (not commies in the medical version) under every office rug.

I have read hundreds of studies on CyCbl And HyCbl. As previously stated an average of 33% did not respond in any way. 66% tended to have very minor changes in blood work, ie MCV coming down from 105 to 100 (success of a dubious kind). When an occasional person had hypokalemia they would have to discontinue if it was severe. While they noted the hypokalemia is a result of starting to make red blood cells, the protocols used don't allow adding additional items. Further when people reported immediate results such as "increased energy" and "feeling better" from the injection, based on AMA policy these people were reporting "placebo" effects and the doctors were told that they would be prosecuted for giving B12 to people like they were drug addicts because they said it made them feel better and request B12. Since "WE KNOW" that a vitamin can't have immediate effects like that it has to be placebo".

The doctors, under threat from the AMA were ignoring every person who actually responded and the AMA called that "placebo". Because the ones with "undesirable side effects" and hypokalemia is a dangerous and undesirable side effect all right but they also acknowledged that it was caused by rapid cell formation, but because of the protocol they couldn't do a thing. Then the big flaw was that they didn't t get all the responders in a study and chart out the clinical path of healing. They were systematically ignoring all the actual results and studying all the people that had no healing responses, only those whose changes were so minor that microscopic exam was the only way to see it.