My husband just got the test results back - he has the c677t mutation.
We are in contact with an ND to get what he needs.
Always something more to learn!!
Posted by debilyn (Member # 35753) on :
Hi, I have that mutation and the other one, a122-something.
My LLMD gave me methylated B complex with methyl folate or metafolin. These are to help with detoxing.
It is a product made by Douglas Laboratories, and it cost about $20 for two month supply.
Posted by MichaelTampa (Member # 24868) on :
I'm taking Xymogen's Methyl Protect product for this.
Posted by faithful777 (Member # 22872) on :
I take Deplin and use methylcobalin shots daily. Both really help.
I tried some of the otc folate supplements and they are just not enough.
Posted by dbpei (Member # 33574) on :
I have heard that this test is really pricey. Once you went on these two meds, did you find that you felt much better?
Posted by sk8ter (Member # 8671) on :
the 23andme.com test has these mutations and about 50 others..It is only $99
Posted by lyme in Putnam (Member # 11561) on :
I have 677 and 1298. I take Metanx b6/b12. I feel te same with and without. Stats are 80% of all tested have 677 mutation I got mine tested through Quest.
Posted by beaches (Member # 38251) on :
The MTHFR test should be covered by insurance if you test through Quest.
This whole thing is new to me...still learning about the 677 snd 1298 mutations.
If you have two copies of the 677 (ie, one copy from each parent) you are considered homozygous. If you have one copy, you are considered heterozygous.
If you are hetero, the amount of enzyme you are lacking that processes the B vitamins isn't as bad as those who are homozygous.
From my very limited understanding, a diet low in sulfur, combined with methyfolate and methyl-B-12 shots should help.
I'm still on the short end of the learning curve so I too would appreciate more info from others.
Posted by beaches (Member # 38251) on :
UP
Posted by Blackstone (Member # 9453) on :
I'll be able to write a more in depth post at a later date, but...
Simply put, do what is generally healthful to do anyway and take more bioavailable forms of B12 and Folate, that are pre-methylated. Most cheaper supplements use less bioavailable options. For B12, I suggest sublingual methylcobalamin or better yet hydroxocobalamin. A great product for this is PERQUE's Activated B-12 Guard (http://www.perque.com/products-page/digestion/perque-activated-b-12-guard-2/ )
For folate, don't take "folic acid", but instead "folinic acid" or better yet "5-Methyltetrahydrofolate" (5-MTHF). "Quatrefolic" is basically even a more advanced version of 5-MTHF and you can find many products that use that particular version of 5-MTHF, such as Xymogen's offering. There are many products that are high purity, use quatrefolic 5-MTHF, and are relatively inexpensive.
On top of that, monitor serum homocystine via blood tests as those with 677T may be more likely to trend toward higher homocystine levels than others. However, by keeping up your 5-MTHF intake (and other standard good nutrition), etc... it is unlikely that someone with even 2 copies of C677T will have issues with homocystine. It is important to note that a very large swathe of the population has this mutation and it (along with some associated gene loci) has been studied quite a bit throughout the 90s and onward.
I'm a little troubled by the recent methylation genetic "fad" in the chronic illness community, as are a handful of other LLMDs. The work of a handful of professionals, many with financial stake in the issue and possibly questionable integrity, is being touted as a huge part of "the answer" and is often paired with lots of expensive proprietary testing and shrouded with huge "scary" leaps and assertions that simply aren't based on good science. The very same thing happened a few years ago with respect to HLA typing (and to some degree, later, with KPU etc..). I feel that this alarmism is being used to pray upon vulnerable individuals just looking for answers and carve out their niche, profiting at the expense of honest and quality patient care.
I urge patients and practitioners alike to be wary of the more extreme "doomsayers" who also have conflicts of interest with regards to testing or supposed treatment protocols for methylation genetics For instance, the individual behind mthfr.net, B. L. (who is not a MD or DO, with clinical experience) makes many spurious, unsupportable claims and offers exclusive phone consultations. A. Y. is another to be wary of and is under investigation and lawsuit for conflicts of interests (ie. Saying that she had no relationship to lab diagnostics operations...when it turns out her names are on all the forms and the entire sales/business operation is run by her husband)., as well as practicing medicine without a proper license etc.. There is another individual who's name I forget at the moment ,as well. Much of the alarmist assertions regarding 677T that are repeated spawn from these relatively few sources. Now, it is important to note that not everything these individuals suggest is wrong or bad for one's health, but all of the above issues I've mentioned serve to compromise the "good" information and advice, draw improper conclusions (ie lots of correlation vs causation problems etc), or simply overshadows the good science due to lost credibility.
This is not a phenomenon limited to MTHFR etc... but in truth affects all "cutting edge" developments in medicine, like Lyme itself. When you have individuals who are opportunistic, exploit patient fears, or simply use bad science it cast doubts on the entire field, including those who are trying to make good progress. I encourage all patients to do their own research from many, valid sources, and make up their own mind.
Posted by beaches (Member # 38251) on :
UP
Posted by Razzle (Member # 30398) on :
And yet, the protocol outlined by Dr. Y. has helped hundreds...most of whom are not, nor ever have been, her patients.
I'd encourage you to read Dr. T's article on Methylation:
All separate sources, all basically saying similar things, all from people (most of them medical professionals) who have/are helping people with this stuff.
Fact: Homocysteine is strongly correlated with heart disease.
Fact: People with MTHFR mutations may have elevated Homocysteine.
Fact: B6, B12, & Folate bring down Homocysteine.
Fact: B6, B12, & Folate help compensate for MTHFR.
Ok, so these are correlations...but wouldn't it be interesting if it was proven that MTHFR actually was indeed responsible for the high homocysteine, and consequent heart disease risks?
I think this is something Dr. R. (a Cardiologist) has discovered in his practice.
Just because the rigorous science hasn't been hashed in peer-reviewed journals yet, does not invalidate the facts, the experiences, and the results of the info.
And we here on this forum should be most willing to consider this sort of 'evidence,' given how little peer-reviewed and widely accepted chronic stealth infections & their treatments are...
Posted by desertwind (Member # 25256) on :
Raised homocyst. levels are also seen in migraine sufferers especially migraine auras.
I take xygomen Methyl Protect and it has done wonders for my migraine auras.
Posted by cleo (Member # 6646) on :
Is there anymore information on where this bug comes from other that I heard mosquitos. Is it contagious, are whole families having it. thanks
Posted by MannaMe (Member # 33330) on :
Did any of you go through a herx / detox time after you start supplementing for the MTHFR?
Posted by beths (Member # 18864) on :
I sort of agree with Blackstone. We just don't know. I am always skeptical of any new "fad" if only a handful of "researchers" are finding a "blocker" MTHFR pathway.
There was a famous experiment similar to how Razzle posted
Fact: More people drown when ice cream sales go up. Fact: People who eat ice cream have a higher chance of drowning However-in this scenario, although the facts are true, it doesn't take into account that ice cream sales go up when its hot out, and when it's hot out, more people go swimming. Thus, if more people go swimming, the rates for drowning go up.
I'm not trying to be snide or rude....just pointing out we have to read everything very carefully, and look at a lot of factors.
I spoke to a lyme friendly cardiologist and asked him about MTHFR. There hasn't been a study on a large population with elevated homocysteine levels to see what percentage actually have a MTHFR mutation.
Apparently 40-60% of the population does...
That said, if you take a B complex, it doesn't hurt to take the ones with the active form of B12, folate etc. If you take a acid blocker, or have poor digestion you don't process B12 well anyways, so it supplementation would help.
Posted by beaches (Member # 38251) on :
I'm with Razzle on this. I think MTHFR could very well be the missing link for many people. It just seems that so many people stay sick for years regardless of treatment modalities, diet changes, etc.
A MTHFR mutation can lead to Vit B12 deficiency (despite nml or high B12 serum levels). Google "functional vitamin B12 deficiency."
B12 deficiency can cause a multitude of symptoms including fatigue, lack of energy, abdominal pain, memory/cognitive issues, etc. Sound familiar?
And, as an aside, for all those here with GI issues, your gut could be lacking something called "intrinsic factor" which compromises the gut's ability to absorb B12, regardless of whether you have MTHFR, which results in a B12 deficiency.
If I didn't find out I had the MTHFR mutations I wouldn't have known that I should request my homocysteine level, which was high. This is a very important piece of information indeed!
My doc recommended methylcobalin shots and the MTHFR supplement from Xymogen. Hopefully, they'll help in a myriad of ways.
Another thing I found very interesting while reading about the 677 and 1298 mutations is that a woman has a higher chance of giving birth to a child with a neural tube defect like spina bifida, congenital heart problems, Down Syndrome. Pretty sobering information to say the least.
And there are message boards for women with MTHFR who want to become pregnant!
I personally am very glad I was tested for this (and retroactively relieved that this was one thing I didn't worry about while pregnant!)
Knowing what I know, I had my kids tested. If they test positive, treatment will be started and they will be fully aware of this issue in the event they want to start a family years down the road. Knowledge is power.
Blackstone and Beths, I've also read that these mutations are not rare. Perhaps that's why cardiovascular disease is the leading cause of death in the US.
Since MTHFR seems to be covered by insurance, I perhaps one day it will be used as a screening tool to assess who is at higher risk of developing cardiovascular disease.
Cleo, this isn't a bug. It's a genetic mutation. If you have it, you lack an enzyme that effectively processes B vitamins.
Blackstone, you mentioned "other LLMDs." Are you an LLMD yourself?
Posted by Razzle (Member # 30398) on :
Thanks Beaches.
Beths,
I posted that those facts I listed were correlations, not causation... Big difference...
The information about MTHFR and related genetic variants is so new in the medical field, that is why there aren't reams of peer reviewed info on it.
I also need to point out that, like Celiac and a number of other genetic related issues, just because one has the gene doesn't mean the gene is active, triggered, and/or impacting the person's health in a noticeable way.
And like Beaches mentioned, heart disease affects a whole lot of people, some of whom have MTHFR issues as a root cause, or as a compounding factor in their heart issues.
Please note that my post is meant in a kind, gentle tone...just in case there is any chance of mis-interpretation... Posted by beaches (Member # 38251) on :
"I also need to point out that, like Celiac and a number of other genetic related issues, just because one has the gene doesn't mean the gene is active, triggered, and/or impacting the person's health in a noticeable way."
Very true Razzle.
More thoughts about this MTHFR mutation...
--- there is a reliable and cheap test for it!
--- the diagnosis is not clinical!
--- there is cheap, readily available treatment for it!
I'm not happy to have it, just relieved that there is treatment that might very well help with symptoms attributable to other things, not to mention that I'm glad to know I must now monitor my homocysteine level.
Posted by MannaMe (Member # 33330) on :
With the 677 mutation, the lab told us, it means he has trouble getting rid of toxins.
That made sense to us, because he gets so sick / herxes on any abx or herbals. He also got sick when he got the Myers cocktail at the LLMD. The LLMD said its usually the toxic ones who get sick on the IV's.
He's not the happiest camper since starting the supplements to treat the MTHFR. He did start low and is herxing. This may be the big missing piece to his puzzle! I sure hope it is!!
Posted by Larae30 (Member # 35220) on :
I added in mB12 and methylfolate. I have a double copy of c667t, amongst other things
Posted by beaches (Member # 38251) on :
MsnnaMe, that makes sense to me too.
Thanks SO much for bringing this topic to everyone's attention.
Larae, hope you are feeling better with those additions.
Posted by BuffyFan (Member # 34679) on :
Help me understand this...I have the A1298C (heterozygous) mutation...MMA and Homocysteine levels are normal
Serum B12 level was at 900 a few months ago. Do I still need to supplement? I do not have pernicious anemia..was tested for intrinsic factor
I just had serum folate tested and it's 477
I asked on the mthfr board on facebook but no one ever answers me. Posted by lyme in Putnam (Member # 11561) on :
80 percent tested had 677. Guess thats common one.
Posted by MannaMe (Member # 33330) on :
Sorry, BuffyFan, I have no idea. I'm only learning about this stuff myself.
I asked the ND if my husband could start the supplements before testing - would it cause harm? He said it won't cause harm.
Today was a better day for my hubby. He did another foot detox to help pull the toxins out.
Posted by Razzle (Member # 30398) on :
BuffyFan,
What's the normal range on the lab report for the test for Serum Folate?
Your B12 status is excellent. It is possible there are no other mutations in your methylation cycle, and there is another enzyme pathway that circumvents the MTHFR mutation.
So it is possible your body is compensating adequately for the block without you needing to do anything different.
However, I would recommend that you try to find supplements containing the active form of Folate (5-methyltetrahydrofolate) instead of the synthetic Folic Acid, just to assist your body with the MTHFR mutation.
Posted by BuffyFan (Member # 34679) on :
Thanks Razzle.
The lab range for my serum folate test is >280 ng/mL
what brand folate are you all trying?
Posted by Razzle (Member # 30398) on :
I think that looks fine, BuffyFan. My recommendation for the active Folate still stands, though...
My doctor recommended Thorne's 5-MTHF, starting with the 1mg and slowly working up to the 5mg.
Posted by beaches (Member # 38251) on :
Buffyfan, you always have to look at your labs within the scope of the nml range.
But with this B12 thing, the more I read the more I realize you can still be deficient even with labs in nml range. I agree with Razzle that you should try supplementing with the MTHFR. And you might want to also consider methyl B12 shots too, especially if you lack energy/strength.
Lyme In Putnam, 80% test + for 6777? Would you mind telling me where that stat came from? I am a bit skeptical about that, considering the vast majority of the population likely has not been tested for MTHFR.
Posted by Anissahope4healing (Member # 39221) on :
we all use Thorne 5-MTHF
started low and worked dosages up. my son who is nine is feeling better on that and the methyl B-12 sublinguals. our family of four take it at different doses.
dh has 677 and 1298. my nine year old has homogenous 1298. I am waiting for my results and when we tried our five year old they could get a vein that day. it was an awful horrible time that we want forever out of our minds.
anyways, discovering about the MTHFR through this forum is what helped me. I never heard of it before. praise The Lord! if you have some of these mutations you are not suppose to use nitrous oxide at the dentist..it can be deadly.
since it is such a simple test, doctors should add it to our blood labs. these MTHFR problems cause depression, fatigue, heart, lung, bi-polar, strokes, aneurysms, and so on.
and all we need to figure out is which vitamin we need that is broken down for us already. www.mthfr.net has some great info, but my brain handles portions at a time.
Posted by MannaMe (Member # 33330) on :
Anissahope4healing, how long did it go till your son felt better? I realize it is different for everybody.
It's two weeks now since my husband started using the supplements for the MTHFR. He says he feels 'different', not necessarily better.
He feels his body is detoxifying, and it doesn't always feel so good. Sometimes it feels bad!
If he couldn't get rid of the toxins properly before, he's probably got a backlog of toxins to eliminate.
He is doing Epsom salt soaks, foot detoxes, uses binders, and liver & kidney support. (The ND says his lymph & kidneys are doing fine)
Does anyone have suggestions to help detoxify easily?
Posted by hopeful4 (Member # 8486) on :
I am homozygous for the C677 mutation. I use L-5-MTHF by Designs for Health as prescribed by my doctor. Also, no gluten helps with this mutation.
The supplement and the gluten free diet have both helped me feel better.
Best wishes.
Posted by Anissahope4healing (Member # 39221) on :
MannaMe,
it is hard to say exactly how long it took for our son to feel better. My nine year old was also diagnosed with Borrelia Burdorferi and tested positive for Babesia Duncani.
the LLMD we started him at put him on Enhansa (Cucurmin, one twice a day, Artemesia working up to 3 times a day, Crypto-Plus (liquid dropper tastes awful) but working slowly up to two dropper fulls daily,
interface plus taken with food twice daily and Transfer Factor Lyme, working up to two a day. I believe this is what we initially started with for Lyme and co-infections. and the Fola-Pro wasn't added until 1 month or so after starting the protocol and our doctor didn't tell us about the sublingual methylcobabalin b-12.
we started with just 1 at a time, waited four days or so and then added another- to see how he was going to respond and by going slowly, if there was a reaction we hopefully would be able to tell which supplement caused it.
we began to see differences both good and also not so good..herxing? Now he is doing very well on all of them but we did have to add one more supplement that I read about on this forum to help,his body get rid of ammonia-
and it is by Klaire labs Alpha Ketoglutaric Acid. I read how it really helped significantly a teen (I think). I feel even though we see doctors, if we read or figure out something else then try it, and/or inform the doctors about it.
then after being on that protocol for about 2 - 3 months we could tell his fatigue, moodiness, and so on would hit at certain times of the day or most of a day sometimes periodically and other times like clock work.
that is when I researched about detoxing, moods, anxiety, and so on. I would guess that after adding and working up from Fola-pro (smaller doses) to I capsule of 5-Mthf, and adding the sublingual methyl-b 12, we noticed a difference within a week.
also if he hasn't eaten frequently, every two to three hours, his blood sugars drop and we know we got too busy or just didn't feed him in the timely manner he needs. and we give snacks like organic grapes, apples, cheese, and so on.
I wonder for your husband if he could get a glutathione IV, Vit c, and methyl b 12 and a Vit d 3 shot. oh I forgot my son was low for Vit D, and he takes 5,000 mg a day, and I take 10,000.
I also would see if your husband dosages need to be increased or decreased. I personally feel better on two 5-Mthf by Thorne, but I also take all of the supplements my son takes.
when you get a chance read about BH 4 and I'll try to find a link that has some great information gathered from different MTHFR sites and you can see if anything stand out to you to help your husband.
drink lots of water, sleep, sleep so important. also since your husband is obviously older he will have a much larger amount of toxins built up, so that can and probably is playing a significant role.
my son did for a short period feel worse. but since we were going so slowly, we didn't increase anymore until we could see that he was better.
all of this is so difficult, and we have to search for knowledge to really help ourselves. I also just remembered Milk Thistle for the liver My husband and I use everyday, and Dandelion Root for kidneys. we forget sometimes but that is something else we do.
if I don't respond right away you can pm me because I am not on the site everyday and won't know unless it was a thread or post started by me that someone had a question.
and I just thought about yeast and taking Nystatin and Diflucan at times to get our yeast under control. and probiotics are ESSENTIAL...both bacteria probiotics and Florastor which is a good yeast. our family take probiotics daily because we need our gut healthy.
we are here to support you all. keep at it- you'll find the right combination that works. it just takes time..that is the very difficult part and figuring it all out.
Posted by Anissahope4healing (Member # 39221) on :
I also just remembered that 677 and I think 1298 should not use the laughing gas at the dentist's office- very dangerous.
and although we take, meaning our family many of the same supplements, there is definitely a difference in what dosage a 677 would take in relation to 1298.
my husband is heterozygous having both 677 and 1298. my son being homozygous does need more supplementation.
Posted by Anissahope4healing (Member # 39221) on :
forgot to add that I read to add a bottle, large bottle of hydrogen peroxide with the Epsom Salts. it helps somehow with oxygen, but I'll try to find the doctor who talked about detoxing and using Epsom Salt with Hydrogen peroxide.
and on a side note, years ago my husband, before I even knew him got a super deep tissue massage. the therapist told him to drink plenty of water because of the toxins being released. Well, he drank some but that the whole toxin thing was a bunch of baloney, until he started throwing up for hours. he quickly became a believer.
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