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» LymeNet Flash » Questions and Discussion » Medical Questions » Have you done genetic testing?

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Author Topic: Have you done genetic testing?
Crawgir1
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I'm thinking about doing the 23andme genetic test recommended by Dr. Lynch on MTHFR.net.

My LLMD directed me to the site, and said that 90% of her patients have the MTHFR mutation, that most likely I am building up folic acid due to this inability to make use of it, and that it is hampering my immune system.

She wants me to take methylated folate and avoid folic acid in supplements and "fortified foods".

Apparently the 23andme testing uses a saliva sample, and returns raw data. The raw data is run through geneticgenie.com to give useful information.

Is this testing worthwhile in my treatment regimen for LD and Babs?

What is your experience with it?

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beaches
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Well I'm a newbie at this myself. First thing I'd personally do is have the MTHFR labs drawn through Quest where they're likely covered by insurance.

If you end up with a mutation, you can begin taking folate and methyl B12 shots. For now, I'm trying to avoid spending megabucks on more labs like 23andme.

Never heard of geneticgenie.com. And also never heard that build up of folic acid hampers immunity. That's very interesting. Wondering about that 90% figure too. And if that's unique to patients with LD.

Good luck to you. And please post whatever you find out.

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Razzle
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Whether or not people with Lyme have MTHFR, Lyme itself can impair methylation and thus it is wise to take methylated B12 & Folate when one has Lyme/coinfections.

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-Razzle
Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs.

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beaches
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Razzle, I wish I knew that years ago.

I've read so much of Rich Von K's work. It just never dawned on me that we should have been on top of this all along. I used to think it was a CFS problem, not a Lyme problem.

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lax mom
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I wish the CFS and Lyme Drs would combine their knowledge and work together.

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Abxnomore
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I'll second that and throw in the fibromyalgia doctors, as well.
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beaches
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Yeah, you and me both. I think there is some overlap amongst them, but not enough.

And while we're at it, let's throw the mold guy into the mix too.

This illness is very, very complex to say the least.

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beaches
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Yeah, I just have to give a big sigh when it comes to those "fibro" docs.

I have a hard time with "we don't know why you have tender points all over your body, headaches, muscle/joint pain, dizziness, fatigue, post-exertional malaise, GI issues" so we'll give it the label of fibro and hope for the best.

I personally wonder why so many women just accept this as an adequate/appropriate diagnosis. I personally think it's an outrage.

And upon hearing the "medical advice" dispensed by a "fibro" doctor is to "have your husband take you on vacation"....well let's just say I need a vomit bag.

Why doesn't it dawn on these doctors that the root of these symptoms could be from an infectious disease like Lyme?

Oh, I already know the answer to that question. There is no such thing as Chronic Lyme Disease.

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lax mom
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beaches: and the first thing the Fibro Drs RX is an anti-depressant. [cussing]

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beaches
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Yep. That's the very first thing they prescribe for fibro.

Outrageous and ridiculous. And I'm not at all opposed to anti-depressants. I think that class of drugs has its place treatment-wise.

But these docs don't even consider an infectious cause of the symptoms. That's the biggest problem.

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Blackstone
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I don't have much faith in Lynch or Yasko's approaches; much of it seems to be unvetted alarmism that doesn't hold up to scrutiny necessary to make the kind of predictions listed.

I would be extremely, extremely wary of many "genetic testing" modalities. It seems that many unscrupulous people are latching onto them (especially methylation right now. Remember how a few years ago it was HLA typing?) as the next "big thing" that is the reason that so many people can't get well etc... and of course, since it is genetic, it means that "handling" it requires a lifelong set of of supplements, protocols, and more - which is extremely lucrative for a handful of physicians who proffer this secret and enlightened approach (none of whom take insurance, of course).

Especially when it comes to methylation genetics like 677T etc... these alleles are often well studied and are present in a very large swathe of the population (More than 50% of some ethnicities have at least one 677T copy, by some reports); the majority of whom aren't suffering from chronic illness or in ill health at all. Its one thing to advise those patients to say... put homocystine into their routine bloodwork rotation and take methyl or hydroxo-B12 along with 5-MTHF if they supplement (which are really better forms for everyone to be taking regardless of genetics), but this is a far cry from the generally unsupported alarmist catastrophe that is being proffered by certain individuals, complete with extensive and expensive lifestyle changes etc... This doesn't mean that these genetic tests can't be useful under the right circumstances, but watching the explosion of unsupported, cataclysmic conclusions drawn from them isn't accurate nor helpful.

I find these approaches to be misguided at best and unethical and putting profit before the health of scared, chronically ill individuals at worst.

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Lymetoo
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I AGREE, Blackstone.

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beaches
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Blackstone, after spending more than $100,000 out of pocket with little gain over the past few years on tx for LD and cos and getting nowhere fast, I think it's rather refreshing to look at genetic testing.

Methyl B12 and folate are cheap supplements and certainly can't hurt. And who is to say that this can't help with symptoms? If you research the symptoms of B12/folate deficiency, those results are pretty scary.

I'd bet barely anyone in the "normal" population has a clue about these genetic abnormalities. You say they're well-studied.

I follow the science. How come I'm just hearing of them very recently? How come my PCP has never heard of them? How come no one ever tested my homocysteine level before?

Thankfully due to this testing, I found out I have genetic mutations and an elevated homocysteine level and can actually do something about it.

And I had my kids tested too. And I can actually do something about their mutations too.

I would not discount HLA testing either.

I hate to say it, but a lot of your argument could very well be used against LLMDs.

And, not for nothing, I learned about these mutations for FREE. Labs for these were COVERED BY INSURANCE and researching them on the net cost me nothing.

And asking the LLMD to prescribe the methyl B12 shots was free. The shots are cheap and so are the methylfolate supplements.

How many people are walking around with these mutations unaware? How many of them have high homocysteine levels that they'll never know about?

Don't you wonder why heart disease is the number one killer in the USA?

Just saying.

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beaches
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Blackstone, you said:

"Its one thing to advise those patients to say... put homocystine into their routine bloodwork rotation and take methyl or hydroxo-B12 along with 5-MTHF if they supplement (which are really better forms for everyone to be taking regardless of genetics)"

When was the last time you've had a LLMD/cardiologist/internist/PCP even mention any of this?

I've been around a long time. Not one physician has ever mentioned putting homocystine into routine bloodwork, nor B12 or folate. Not a single one. I've had to request those tests.

So you gotta wonder how many people are walking around with elevated homocysteine levels, and subsequent heart disease, the number one killer in the USA.

Again, just saying.

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lax mom
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The only things the regular Drs check are: CBC, BMP, TSH and maybe cholesterol. That's it!

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beaches
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Yes, lax. And even then you have to sometimes request those labs be drawn.

Blackstone from what I gather is a doc. I'd really like to hear what he/she says regarding my posts.

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dbpei
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I learned that I had high homocysteine levels recently and my LLMD followed up with MTHFR gene testing and I learned that I had 2 genetic mutations. I am now trying to avoid any foods with folic acid added and am taking the methylated B12 and folate.

I have other issues going on with a major dental infection so I don't know if switching to these supplements has helped, but it is good to know that I am not doing more damage by taking the wrong form of B vitamins.

I decided to invest in the 23and me genetic testing (for both my husband and me) after learning about this other mutation.

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lax mom
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Do Drs get some sort of kickback for running as few labs as possible? At times, it has been ridiculous to the point of malpractice.

I went to a Rheum on the advice of an Infectious Disease Dr to rule out lupus. He ran a CBC and Urinalysis and that's it! No CRP, Sed rate nor ANA...yet he ruled out Lupus???

He even mailed me a letter saying "Your labwork was normal". My LLMD ran a CRP and it was 18!!!

My husband had Tularemia sores eating away at his legs. He went to Vandy and the Rheum only ran a CBC and told him it was auto-immune.

A Hematologist, Dermatologist, PCP and on and on did the same thing. No tests for any infectious process and they put him on Prednisone and Cellcept saying it was Auto-immune.

After seeing an LLMD and having them draw 40 vials of blood and finally finding the cause, thus getting correct treatment and near cure (for my husband), it makes me wonder why regular Drs are so disgustingly negligent in their lack of willingness to order simple labs, even in the most severe cases.

There has to be some sort of monetary reward behind this behavior. I have seen it too many times lately. (Using blackstone's words) It is unethical and putting profit before the health of scared, chronically ill individuals.

[ 06-01-2013, 09:33 AM: Message edited by: lax mom ]

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beaches
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dbpei, can you please let us know your results from the 23andme testing?

lax, it's ridiculous isn't it? But not surprising. I wouldn't be at all surprised if there's some incentive in NOT ordering appropriate labwork. Disgraceful, really.

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Lymetoo
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I thought doctors got kickbacks from labs .. maybe not in CA??

or perhaps I am wrong!!!

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beaches
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Who knows?

Ignorance seems to always prevail.

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BBinme
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Hello,
I don't know a lot about this subject, trying to learn about it, especially methlation issues. I was wondering if any of you have been prescribed metanx? Www.metanx.com My Llmd recently ordered it for me for nerve pain that I have been having. I haven't gotten in the mail yet, but would this possibly help with methylation also? Thanks for any input :-)

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Razzle
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Yes, Metanx will help with methylation.

Metanx contains methyl-folate, methylcobolamin (methyl-B12), and the activated form of Vitamin B6 (P5P).

These are the 3 nutrients needed in the core protocol for MTHFR mutations and to deal with high homocysteine.

As for why doctors don't run more tests - there are insurance company incentives for doctors to cut down on the number of tests they run. Perhaps even affecting reimbursement to the doctor, I don't know.

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-Razzle
Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs.

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beaches
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I've never heard of metanx. But now I'll look into it. Wondering if this supp is the best way to get methyl B12?

Geez, we never get a break from learning do we? I guess I should be grateful as the research keeps my brain very busy.

I'm not at all surprised that docs have ins co incentives that prevent them from running more labs.

Nor am I surprised at the exorbitant costs of testing.

We had to travel to another state to have the MDL Lyme culture test. Fine and dandy. Except for the fact that we had to shell out over $200 bucks for a bogus appointment with a doc we will never see again, just for the pleasure of his office being able to order this test. Not to mention the $40 for the lab draw.

So really, we had to pay up front almost $300 bucks for a bogus office visit in addition to the $1k + we'll be paying the lab for the actual test??

This is all getting very old.

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lax mom
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Oh my gosh beaches. That is terrible that you had to go through all of that just to get a test that's allowed in other states. It's nonsense.

It's not like you are trying to get a test that's from some other country.

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beaches
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Yeah, it's nonsense. But we do whatever we have to do. If that BS means my DD has a shot at getting better, it will have been worth it.

I just am having a bit of a problem shelling out big bucks for a bogus doc visit just to get labwork. IMO the guy should have charged $50 bucks for the pleasure of us traveling there for a stick in the arm.

The parasites we have to deal with aren't just inside ourselves IMO.

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Razzle
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quote:
Originally posted by beaches:
The parasites we have to deal with aren't just inside ourselves IMO.

How can I "like" this comment a hundred thousand times??!!

That's terrible, Beaches!

On the Metanx, it contains unhealthy inactive ingredients (like most other Rx's), including dairy, soy, and other junk -- see http://www.metanx.com/healthcare-professionals/package-insert/ for complete ingredient list.

There are some good alternatives out there from reputable supplement companies, that don't have the excess chemical binders/fillers/etc.

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Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs.

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tailfeathers
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Sorry to be OT but Beaches and lax mom, I COMPLETELY AGREE! I too spent a FORTUNE doing useless CFS/FMS treatments which got me absolutely nowhere. And Rheumatologists (saw the best at Duke) was a complete a--le. Saw me for two mins and gave me the above dx.

I have been doing the methylation supps now for over 5 mths and I am starting to question this whole mehylation thing as well. My doc says "it takes a while for them to kick in".. though I believe we shouldn't discount *anything* right now, I'm starting to wonder if all the $$ I'm spending is worth it!

Oh and btw, docs do get incentives not to order tests -from Insurance companies!!

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BBinme
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Razzle thank you for your input. I've never been tested for methylation issues, but like you said earlier those with Lyme likely have problems with it, and supplementation could help. Do you mind if I ask you what some of the other alternatives are that won't have all the other "junk" in their supplements, and what that supplement would be? Thank you again :-) dee
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beaches
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Razzle, glad you appreciated my comment. I like it myself [Big Grin] Thanks for the info on the metanx. Doesn't sound like something I'd be interested in.

Tailfeathers, sorry to hear you've been through all that. I too have heard that the methylation stuff can take time to kick in. I read somewhere that you should go slow with the folate. Time will tell. At least the B12 and folate are cheap.

BBinme, I am new at this myself, but I can tell you that there are at least two reputable companies that make the folate we need:

Metagenics has FolaPro: http://www.metagenics.com/node/5864

and Xymogen has 5-MTHF: https://www.xymogen.com/products/product-detail.aspx?pid=2

Note that the Metagenics brand has 800 mcg and the xymogen has 2000 mcg.

In addition to the folate, methyl B12 shots are also prescribed.

Razzle will have more info for you, I'm sure.

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Razzle
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Thorne Research has a product that combines the P5P, Methylcobolamin & methylfolate (5-methyltetrahydrofolate), plus TMG (which also helps support methylation):

http://thorne.com/Products/Aging/Cognitive_Support/prd~SF787.jsp

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-Razzle
Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs.

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beaches
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Razzle, I thought the oral methylcobolamin wasn't adequately absorbed by the body? If you've heard differently please let me know. Avoiding needles would be a good thing.
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lax mom
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What about sublingual methylcobolamin?

I think I'm gonna get the 23andme test.

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beaches
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lax, I've read the sublingual methyl B12 isn't very well absorbed by the body.

Please let us know what happens with the 23andme testing!

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lax mom
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Will do beaches! Just ordered the kits (for myself and my son) today.

[ 06-03-2013, 10:17 PM: Message edited by: lax mom ]

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Great, thank you razzle and beaches!
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dbpei
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Below is a segment by a LLMD explaining in simple terms the MTHFR gene mutation and recommended supplements.

http://www.treatlyme.net/articles/2013/5/27/mthfr-and-detoxification-a-lyme-byte.html

My LLNP has talked about wanting to teach me how to do the B12 injections when she learned I had this mutation. I don't know if there is any way to find out if the oral and sublingual B12 are effective because I have read that some of the blood testing for B12 levels is inaccurate for those of us with this mutation.

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Dekrator48
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laxmom,

Did you do the 23andme testing yet?

I am thinking of doing the 23andme testing and was surprised to see that is costs only $99 and no Dr. is needed to order it.

I just listened to a webinar by Dr Ben Lynch on MTHFR and thyroid disorders that he just presented.

http://mthfr.net/mthfr-and-thyroid-disorders/2013/07/18/

The actual video of his presentation will be available next week.

--------------------
The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.

"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11

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lax mom
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I just got the results back yesterday. My son has many more methylation and detox SNP's than I have which explains how he had autism symptoms with his Lyme. I can't detox, but he severely cannot detox.

Interestingly, I found that we both are homozygous for VDR taq, which could explain why our Vit D levels are low.

I am really impressed. I uploaded the 23andme results into the genetic genie.org website to get my methylation profile and detox profile...you get ALOT of info for the $99 23andme test plus a small donation to geneticgenie.

Now I just wish I knew what to do with the info. I'm quite confused. However, I am very glad I did the test.

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birdie67
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It's great that genetic genie gives you information on what to treat first and suggestions on how to treat. Going to Amy Yasko's website will give you lots more info and also Heartfixer.com.
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Dekrator48
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Thanks lax mom! I'm happy you and your son know why you cannot detox. Probably with a little research, you will know what supps to take to help with your genetic mutation.

When I listened to the webinar last night, Dr Ben Lynch talked about how important Riboflavin is, and how people with MTHFR defects, especially 677 defects which are more serious, should restrict sources of synthetic folic acid.

He says Methylfolate, folinic acid and B12 are also important.

He said that high doses of Riboflavin work better than meds for reducing high blood pressure in people with MTHFR defects.

He said there is a huge link between thyroid disorders and MTHFR.

You may want to listen to it, as a starting point from which you can build info on what to do now.

Here's the link to the page where his presentations can be found on the right side of the page. He just did one on methylation and MTHFR also:

http://mthfr.net/author/drben/

--------------------
The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.

"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11

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Dekrator48
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Thanks for that info, birdie!

That will be very helpful!

--------------------
The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.

"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11

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Dekrator48
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Anyone who is on Facebook can "Like" Dr Ben Lynch and get info he posts on his page.

He also answers some questions about MTHFR.

--------------------
The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.

"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11

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soccermama
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I have a question. The one time they took my homocysteine level it was slightly above normal but my vitamin B levels were off the charts high.

The neurologist prescribed metanx anyway and I began taking it.

Fast forward, to Cleveland Clinic. High vitamin B levels and was told to go off the Metanx.

My MCV's or MCH's on the CBC tend to run high. LLMD said it could be caused by low vitamin B. Did another blood test, B levels very high.

If I have the methylation defect, then why didn't metanx work?

I have all my labs and I think that I am going to make a chart with all the labs and find a doctor who doesn't dismiss some of the slightly elevated blood results.

Does anyone know if such a doctor exists?

Any input?

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TX Lyme Mom
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I'm 100% in favor of genetic testing with 23andMe. We know friends who had their whole family tested recently, by taking advantage of their 20% off special price for all "spit kits" sent to the same mailing address (after the first full price ($99) kit). It's a very good value!
https://www.23andme.com/store/cart/

It takes about 6-8 weeks to get results back, but we already know our daughter's results because we had tested her, using Amy Yasko's test panel ($495) a few months earlier. (Our daughter was the chronic Lymie in our family, but now cured.) After seeing how many SNPs (single nucleotide polymorphisms) she had, that's what convinced me that it's important to get this form of testing done. The goal in testing her and treating her methylation defects is to insure that she maintains her remission from Lyme without relapse.

It's complicated learning how to treat the various SNPs, but this website simplifies it somewhat -- still pretty overwhelming anyway, but rather clearly presented here:
http://www.heartfixer.com/AMRI-Nutrigenomics.htm

Should all chronic Lymies be tested? Yes and No. Not if you are overwhelmed with Lyme treatments, but maybe later in order to help maintain your remission. Or if you aren't making any progress at all or are having trouble tolerating antibiotics or other Lyme treatments, then why not change course and address methylation defects first?

Then you can always return to Lyme therapy later after you've corrected your most troublesome methylation defects, so that your immune system is better able to tolerate antibiotics and/or other Lyme therapies. Some folks in the methylation forums are doing methylation therapy now because they have failed other Lyme treatments.

There was a presentation on methylation scheduled at the ILADS conference this last fall, but the speaker who was on the program passed away unexpectedly one month before the conference. (link below) Hopefully, ILADS will fill that speaker's slot with someone else versed in methylation therapy at their next annual meeting. It will be a big advantage for patients when ILADS LLMDs learn more about methylation therapy for the sake of their most difficult Lyme patients who are not responding well to regular antibiotic protocols.

http://www.ilads.org/lyme_programs/boston/speakers/bio_vankonynenburg.php

[ 07-24-2013, 11:41 PM: Message edited by: TX Lyme Mom ]

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GretaM
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This may be a silly question, but I can't wrap my mind around this methylation thing...

I had my B12 tested, and it came back within range.

If I had methylation issues...it would be low out of range, right?

Thanks [Smile]

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TX Lyme Mom
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quote:
Originally posted by GretaM:
This may be a silly question, but I can't wrap my mind around this methylation thing...

I had my B12 tested, and it came back within range.

If I had methylation issues...it would be low out of range, right?

Thanks [Smile]

Wrong.

Unfortunately I can't tell you why though because I'm still relatively new at methylation therapy myself.

All I know is that there are solid reasons why test results for both vit B-12 and folate can be misleading, so don't go by either of those test results to decide if you are a candidate for methylation therapy or not.

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GretaM
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Tx Lyme Mom: Great thanks! That gives me a place to start.

Before lyme dx, I had all this faith in the medical establishment and their tests...

That bubble wasn't burst-it was blown apart.

[Smile]

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Razzle
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With MTHFR, Serum Folic Acid will likely be high, but bioavailable active folate (which I have no clue if we even have a test for this) likely will be low or very low due to the MTHFR mutation.

Vitamin B12 may be low, normal, or high.

Further complicating that issue is the "normal range" in the US is way, way too low. Any B12 test that comes back below 500 should be flagged as low and the patient should begin B12 supplements or shots.

I have multiple methylation variants, and take B12 shots weekly. When my B12 levels are tested, they always come back somewhere in the high-normal range.

Doctors shake their heads at this, because they tell me my level should be off the charts high with the shots, but mine never is...

My body uses up the B12 rapidly, probably at least in part because of the CBS variant I have...(this variant speeds up methylation to the detriment of down-stream enzymes).

Best places to learn more about methylation:

http://www.heartfixer.com/AMRI-Nutrigenomics.htm

http://www.dramyyasko.com/resources/autism-pathways-to-recovery/

http://www.mthfr.net/

--------------------
-Razzle
Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs.

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beaches
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This is such an informative thread!

Lax, so glad you got your and your son's results back. Good to know the 23andme testing is "only" $99 [Smile] It's sure better than hundreds/thousands! I will have to look into this further.

Dekrator, thanks for your link/info re: Dr. Lynch. I've read some of his info, but will have to do more.

Soccermama, my understanding is that you can have "functional" Vit B deficiencies...ie, your B levels can be very high yet you could still be deficient b/c your body is not absorbing those vitamins. DD had B12 levels through the roof. You'd have thought she was getting a B12 shot every day. Not so. She has a gene mutation and is apparently not able to absorb the "regular" B12 we get through diet. Did you get the MTHFR testing?

TX Lyme Mom, thanks for your detailed responses and links.

Greta, get yourself tested. That's the only way to know if you might be having these issues.

Razzle, thanks for those links. Would you mind explaining further what you mean by this: "...the CBS variant I have (this variant speeds up methylation to the detriment of down-stream enzymes)"

And also, could you clarify whether or not that supplement by Thorne has B-12 that can be absorbed by the body orally? Shots are getting old in this house.

Thanks!

And good luck to us all on yet another learning curve.

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GretaM
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Hi all,

My results:

B12 413 pmol/L

I will treat it as low, and take sublingual B12 until I next see my LLND. And then I'll ask about injections.

And get myself tested.

Thanks so much for this thread and the links for more information, all.

I learn so much on this forum!
[Smile]

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soccermama
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I have not been tested but I think it is time. Like TX Lyme Mom said, I made some progress and now my progress has stalled.

So, I am thinking about 23andme and moving from there.

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lax mom
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Greta: sublingual methyl B12, not cyanocobalamin.

Guys: I just downloaded Amy Yasko's book. It's free. She explains everything in such detail. I cannot recommend it enough.

http://www.holisticheal.com/autism-pathways-to-recovery-esp.html

--------------------
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Razzle
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Beaches,

CBS mutations cause an "open gate" phenomenon in which all the stuff being sent through the methylation cycle drains out the bottom of the cycle instead of recycling back to the top of the methylation cycle.

In other words, CBS variants actually increase functionality of the CBS enzyme (unlike MTHFR variants, which decrease the function of the MTHFR enzyme).

But when an enzyme is sped up, it can make errors, pull nutrients away from other critical enzymes, and overload enzymes that deal with the outputs of the sped up enzyme (downstream enzymes of CBS include Molybdenum Cofactor, Xanthine Oxidase, Aldehyde Dehydrogenase, Sulfite Oxidase).

The ultimate result is increased ammonia, decreased tolerance for chemicals (sulfites, alcohol, perfumes, phenolics, etc.), and a consequent shut-down of methylation due to depletion of Vitamin B12 and necessary recycled methionine.

I don't have the answer on whether methyl-B12 is absorbed sublingually or orally. Dr. Yasko recommends oral/sublingual products that contain methyl-B12. But like you, I've heard methyl-B12 can't be absorbed that way. All I know is that I cannot seem to absorb any form of B12 orally or sublingually, so I have to get shots.

--------------------
-Razzle
Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs.

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Maya12
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Has anyone actually found that testing and treating the mutations has been helpful in recovery?
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Healing in Santa Cruz
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Ditto what Maya12 wrote [Smile]
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lax mom
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Maya: I don't think any one approach is a magic bullet. However, lowering the total body burden can only help.

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Razzle
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Vitamin B12 is essential to our very life. We cannot make red blood cells without it.

Glutathione (created by methylation) is also essential - our body depends on this for detox, even of metabolic byproducts of cellular function.

So IMHO, everyone needs to pay attention to methylation.

At the very least, people need to make sure they are getting sufficient Folate and B12, plus other B-Complex, Vitamin C, Vitamin D, and minerals. These are minimum requirements for our bodies to survive.

Specifically in my case, I am very much better off for taking B12 and Molybdenum (helps compensate for the CBS variant)... Basically, I am unable to tolerate much of anything at all (including water) without these two critical nutrients.

So in my case, yes, targeted nutrition designed to help with my methylation genomic variants has been enormously helpful (I'm convinced I would not be alive today without the B12).

--------------------
-Razzle
Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs.

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Catgirl
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Is it best to go off of supplements (already taking B-12) before I test, and if so, how many days prior to testing?

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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Razzle
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No, there is no need to stop supplements for the DetoxiGenomic, 23andme.com, or any of the Methylation genomic tests (MTHFR, or the whole Yasko DNA Methylation Panel). These are genetic tests, so supplements don't affect the results.

However, if you want to get a test to check B vitamin levels, you should avoid supplemental B vitamins for at least 3 days prior to the test.

--------------------
-Razzle
Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs.

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Catgirl
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Thanks Razzle!

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--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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Crawgir1
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My LLMD told me that 90% of her Lyme patients have methylation issues, particularly with folic acid. She said that when I started taking the methylated folate 400 mg 2x a day, that I should notice a difference, and I did-I felt so much better quickly!

She said that I need to stay away from "enriched food" such as flour, where folic acid is added in, that with a methylation issue, that folic acid builds up and impedes the immune system, thus disease can reign.

I certainly felt a difference after just one day myself with methylated folate, and am planning to get the 23andMe testing $99, along with running it through Genetic Genie ($10 donation); there may be other nutrients that I'm not taking in properly that it will show me.

I need all the help I can get, and for that price, it sounds like a deal.

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