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MTHFR Experiences


LNN
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Some of you know I've been bitten by the methylation bug in a big way for the past year or so. It helped me make sense of many of the things I saw happening in my kids. My daughter is MTHFR C677 heterozygous. This means she processes folate at maybe 60-70% as efficiently as someone without the mutation. But it doesn't mean she can't process folate into methylfolate at all. Just less effectively.

 

When we started treating, we supplemented with approx 265 mcg of methylfolate/day (one drop of yasko's liquid methylfolate). Then we built up to 800mcg, as this was my understanding of her recommended dose. For the first few months, DD's mood improved. I made a mental note that as her system re-balanced, I'd have to remember to come back and re-assess the doses of other supplements like tryptophan. Well, things are humming along and by May, I'm patting myself on the back thinking we might finally be done with seeing doctors.

 

Then in June, DD starts having mood issues. Coincides with our getting a new rug, so initially suspect VOCs. Then I suspect allergies, Then yeast. DD continues to backslide, with angry attacks (physical and verbal) on me, provoking arguments with everyone, irrational, rapid mood swings, depression, insane silliness that ends in a flash of evil temper. Insomnia, headaches, muscle pain, fatigue. Yet yeast/antifungal treatment does little. Motrin only helps slightly. An ear infection makes me think Pandas flair, so we up her zith, which helps. But not entirely. So I ask our LLMD for an amino acid test kit to try to figure out what's out of whack. To prepare for the test, DD stops all supplements for 24hrs.

 

Guess what - her issues go from a 9 down to a 5. I head over to MTHFR.net where the doctor describes a case study of a guy who over-supplemented with methylfolate and experiences some of what DD felt. The doctor suggests a small amt of niacin (50mg) as an antedote (niacin requires methyl groups for synthesis, so if you have too many methyl groups (overmethylated), niacin sucks up the excess). I gave DD a small amt of niacin and she did seem calmer - a rage stopped within that hour.

 

So for this past week, I've given her nothing but zith and probiotics. Every day, her mood issues and body pains improved. Her insomnia got better. Everything got better. By the end of the week, her issues were a 1. Now, I see small things that seem to be swinging the other way. In time, I think I'll add back one drop of methylfolate but probably only every third day to start. I'll reassess the other supps too. (which I so smartly planned to do when we started all this but then forgot to actually do it).

 

So while I still think supporting methylation and similar processes has been key for my kids (methylfolate for DD, pyroluria for DS), I just wanted to pass along my lesson learned the hard way. Yes, an ear infection probably contributed to the mess. But my over-zealousness had a hand in the mess too. So for those treating MTHFR and other deficiencies, just a reminder to periodically re-assess and remember that "enough is as good as a feast' and too much can be as bad as too little.

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Thanks, LLM. I think we all get served a slice of humble pie now and again, just to remind us that even Super Moms aren't infallible. ;) I've had way too many slices myself (as my waistline will attest): B12, SamE, EPO, some psych meds. All dismal failures, and many of them my idea. <_<

 

You're a great mom, and a great researcher/scientist/Dr. Mom, to boot! Thanks for sharing the benefit of your experiences with the rest of us and especially for not sparing yourself the "oops" moments that can sometimes be the best lessons for us all!

 

Glad, too, that you're continuing to put the pieces together!

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I'm coming to the belief that the lyme and co-infections have more control of the body which makes it much harder for the body to react to a correction you know the body would benefit from. Having gone through a similar situation, I have found only when I treat the diseases themselves does my son stay level with only mild symptoms now. Can't supplement anything but antibiotics, probiotics and recently apple cider vinegar. In my sons case, time seems to be part of the equation. Cyst busting and biofilms had built up for the 2 years treating PANDAS. This is something so important to address. He has been cyst busting for a year now and that took awhile to work up to. The disease does not let the body react as well as it could. Even magnesium is a big no no for him. It has been amazing to me what he can't tolerate in the way of supps. He is C677 and A1298 hetero. It has been a delicate balance treating this. Bartonella has been a bigger battle for us though. It has been 15 months and he is better but still fighting it.

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If Food Network ever had a Humble Pie eating contest, I think we'd all be in the running. But it still sucks when you realize you're the one responsible for the last 4 weeks of $@#!

 

I was trying to explain methylation to someone and went searching on youtube. I found this

It's 9 min and a good, basic overview about why someone with a child with behavioral issues should consider testing. It doesn't go beyond that, but I thought it was a good Methylation for Dummies intro.

 

If you search on MTHFR on youtube, you get some other interesting hits of longer videos. I haven't watched any of them but for those with nothing to do on a Saturday night...

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I want to chime in with Laura's experience. I was trying to figure out supplements on my own and we recently had labs done. Um, my girls B-6 and B-12 levels were quite elevated thanks to mom. Calcium too. Didn't check everything, but I'm getting the same vibe. Emailed Laura where we shared a "yeah, you too?" moment. I stopped everything but abx and probiotics. Now, I wasn't seeing a ton of behaviors, but some sluggishness and lack of motivation......ok, it's summer. Do I have to read into everything? Apparently I do because two days after stopping I start seeing some get-up-and-go in my ladies and new found cooperation to do more than that which brings us pleasure.

 

Ok, now what. Well, both girls are low in copper, they need some. Found no multivitamins that supplement copper without folic acid. I was giving way too much in several areas, but they still probably need a little. Can I really pull off putting together a customized multivitamin? IDK.

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We are seeing a biomed doctor. Just found out DS is compound heterozygous for C677 and A1298. He started ticcing a few months back now. He's not sick. The biomed doctor added L- Theonine and Taurine to the mix after I took him back w/ tics. DS's behavior is great. His tics are still there. We are heading for Chicago tomorrow to see Dr K on Monday. Checked his titers w/ the ped. Normal, as always. His ferritin levels are still 14!!!!!!!! VERY LOW. I am talking to Dr K about that on Monday. It never ends does it?

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LLM, thank you for sharing!

I have tried adding supplements to my dd daily antibiotics and she can not really tolerate anything?!?

She has never been tested for this methylation problem - but I have tried methylfolate and it made her feel worse (angry, moody). Then months later I tried 5HTP, by the 5th nite it was almost like she was super silly drunk - very scary for me to see :( Never gave that again! Other supplements I have been told by Dr K to try seem to really have a negative impact??!! What is that about??

 

Also chronic low Ferritin @ 24 then 17 and 21. She is a few weeks in to 1 daily ferrous gluconate and seems to be tolerating that one.

 

I have given her fish oil and she doesn't seem to tolerate that?!?!

Too much probiotic messes with her behavior too.

For months she was on antibiotic only.

Ahhh it is challenging and scary to try to figure all of this out! Our kids have such a scary time as it is! I feel so bad when I try things that cause a bad reaction... am I doing enough? am I doing too much??

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I am so glad that your daughter is doing better and you sorted it all out. You are an awesome investigator. Thanks so much for sharing your information. I will keep it in mind. We started combo antibiotics 2 weeks ago for Lyme treatment and my daughter is having an awful herx reaction. I thought we were through the worst part of the neurological symptoms but turns out she was just getting started. Her tics are back, which we haven't seen in a long time. She had a rage this weekend that lasted an hour. She cries at the drop of a hat. Whew, I'm sure hoping this bad before better part doesn't last long. My husband was about ready to throw in the towel. We are giving epsom salt baths which help in the evening, but I can hardly get her to take any more medicine than she already is. Medicine is one of the issues that has come back and it's hard to get down her. She will drink lemon water, so we are encouraging that. Did you see lots of herxing when you started lyme treatment?

 

Dedee

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LLM, thank you for sharing!

I have tried adding supplements to my dd daily antibiotics and she can not really tolerate anything?!?

She has never been tested for this methylation problem - but I have tried methylfolate and it made her feel worse (angry, moody). Then months later I tried 5HTP, by the 5th nite it was almost like she was super silly drunk - very scary for me to see :( Never gave that again! Other supplements I have been told by Dr K to try seem to really have a negative impact??!! What is that about??

 

Also chronic low Ferritin @ 24 then 17 and 21. She is a few weeks in to 1 daily ferrous gluconate and seems to be tolerating that one.

 

I have given her fish oil and she doesn't seem to tolerate that?!?!

Too much probiotic messes with her behavior too.

For months she was on antibiotic only.

Ahhh it is challenging and scary to try to figure all of this out! Our kids have such a scary time as it is! I feel so bad when I try things that cause a bad reaction... am I doing enough? am I doing too much??

Well, the whole point of my post was to use caution when dabbling in supplements - something I do quite a lot. For the record, I do run my ideas past our LLMD for guidance and we test things periodically. But the reality is that as much as I respect our LLMD, he treats chronic infections. Not methylation. He's aware of it, he knows how to test for it and what the basic protocol is. But he doesn't breathe it the way Yasko and Van Konyenberry and others do. And there are few tests that can really tell you exactly what you need or don't need based on your unique genes and lifestyle. So it almost always comes down to using your kids as guinea pigs. My lesson is just that you need to go slow and if you see symptoms, it may be triggered, in part, by a treatment that needs tweaking and not necessarily a Pandas flair.

 

But with that as my legal disclaimer, when you talk about 5-HTP and methylfolate making her angry and silly, it makes me suggest that you look into over-methylation or a need to support neurotransmitters other than seratonin. You might want to research niacin, which sucks up methyl groups and helps with norepinephrine and epinephrine. But any starting dose should be low - like 50mg and not the 500mg you typically find in the OTC supplements. Then work up if you need to. But first, I'd try to test for MTHFR and/or other tests that give you a way to assess neurotransmitters in some way.

 

My son has pyroluria, so Omega 3s/fish oil is not recommended for him. Pyroluriacs need Omega 6s more than they need Omega 3s and the Omega 3s compete for the same binding sites. So supplementing him with an Omega 3 would supposedly make his Omega 6 deficiency worse (based on my reading of Klinghardt). So we use Evening Primrose Oil - one of the non-inflammatory Omega 6s. If you're seeing an integrative doctor, ask about testing for pyroluria (also known as KPU). I have some articles if you want to read up.

 

Probiotics - we give about 30 billion CFUs/day. Some people use way more. I think it's an individual thing. But probiotics can alter the gut terrain, usually in a good way, but again, for some people, too much is not better. We use stool consistency and frequency as a guide to gut health. My DH rolls his eyes, but both of my kids are now trained to announce "Mom, I'm going to the bathroom to poop." (Do you ever wonder what your life would look like on a reality show? Can you imagine the Kardashians announcing on camera that they were headed to the Loo to poop?)

 

I'm not trying to suggest any specific supplement or approach. Ideally, we'd all have doctors who had accurate tests and could tell us exactly what to do. In 10 years, with epigenetics, maybe we'll be closer. But for now, I guess all I'm saying is that when you do find yourself having to play mad scientist, do it in small increments and always realize that just when you think you have it figured out, you'll probably need to tweak. Heaven forbid it should ever be easy!

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Thank you for the info LLM. DD10 has been on 1mg daily of l-methylfolate, P-5-P, and methyl b12 for a year now. I just assummed that she would excrete any unneeded extra. The LLMD has not suggested testing levels. We will check it out.

 

My LLMD wasn't sure on this either and also figured it would be excreted. But this month has made me question that (and given me a new topic for next month's appt).

From MTHFR.net:

In working with MTHFR, there are a ton of nuances with people. It is not possible to simply treat the MTHFR mutation (I wish it was that easy) – you have to treat the person. Their lifestyle and dietary choices are what make the mutation so harmful in the first place. Without improving those, simply addressing MTHFR is not effective because many times people will feel worse.

 

Many people with MTHFR test high in their serum folate and B12. My belief is that is because they are not able to convert them to the active forms. Both serum folate and B12 are the Inactive forms. So testing these is useful but not ideal.

 

Why would testing inactive forms of folic acid and cobalamin be useful? If someone has high levels of folic acid, that is not good. This means there is a block in their body’s ability to process the folic acid into active forms or it simply means they are taking too much folic acid. As you and I both know as physicians, too much folic acid can increase the growth of pre-existing cancer cells.

 

If someone has too much cobalamin, then that tells me they are likely taking the wrong forms of it.

 

There is a RBC Methylfolate value that is valuable to measure. I’m in the midst of locating a lab that will do that.

 

Amino acids, FIGLU and a bunch of other organic acids are also useful to measure.

 

Measuring B12 levels is best done by looking at methylmalonic acid, history, their tongue and I’m sure other metabolites that I have not yet looked into. Keep in mind that methylcobalamin is destroyed if someone takes 500 mg of ascorbic acid at the same time.

 

In terms of which folate is the best form, in my opinion, due to safety and the lack of MTHFR enzymatic function, the only prudent form to use is methylfolate. Methylfolate has many names and they are: Metafolin, 5-MTHF, L-5-MTHF, Methylfolate, Quatrefolate.

 

In terms of which B12 is the best, in my opinion, due to safety and presence of environmental chemicals and heavy metals, only two forms stick out: methylcobalamin and hydroxycobalamin. Most do well with methylcobalamin but have to start it slowly. If people do not do well at all with methylcobalamin, there are things you to need to suss out such as overmethylation, too rapid of detoxification, and others.

 

The Methyl folate trap is something to be fully aware of. You can give all the methylfolate you want to a patient or person, but if they don’t have enough methylcobalamin on board, the methyl group on the methylfolate is trapped – it doesn’t get released. This may explain why many people still mention they do not feel well, or still having their chief complaints, still even though they are taking very high dose methylfolate.

 

If people cannot release the methyl from methylfolate due to lack of methylcobalamin, you may as well be offering them sand.

 

Oral routes of these is sufficient. I prefer sublingual methylcobalamin over capsules but even capsules seem to raise methylcobalamin levels. I know this because of the immediate effect I see from people.

 

If you can get a blend of methylcobalamin and methyfolate in a sublingual, that makes it easy with children and even adults. Remember how important it is to give methylfolate with methylcobalamin to prevent trapping. Now there are some people that will not respond well to this combination – and there are MANY reasons for this. However, there are also many people that will respond favorably.

 

For those with high homocysteine levels or having the C677T MTHFR mutation, I am finding that the nutrients found in HomocysteX are proving to be very effective.

 

If you are wanting to use prescription drugs for MTHFR, than I feel the best one out there is MetanX.

 

Dr Neil Rawlins, out of Washington state also, has some videos on YouTube on MTHFR – on his MTHFR Solutions channel. The videos may be helpful for you. They are pretty basic but they give some good information.

 

Lab testing is difficult to keep affordable. I am looking for the best and most effective lab test out there that is easiest for patient, client and physician. Right now I am using Metametrix Amino Acids, Metametrix Organic Acids, Metametrix Cardio ION, Metametrix ION and considering the Genova NutraVal test along with their NutriGenomic Testing. These tests are expensive but they do provide much information.

 

Lab testing also depends on the type of MTHFR mutation an individual has. Those with A1298C mutations should have their biopterin/neopterin levels evaluated and Metametrix has a panel for that. I’d really like to see a test for peroxynitrate and super oxide. Those, I believe, are commonly elevated in those with A1298C MTHFR mutation and if those are elevated, that is in serious need of lowering as they are highly toxic neurologically.

 

Dr Amy Yasko has some great information on the web in various places. She is truly remarkable when it comes to explaining methylation. She works mainly with autism. What we need to know as physicians is that autism is highly related to MTHFR defects as many children with autism are compound heterozygous MTHFR.

 

I actually am developing a lab test specifically for those with MTHFR. This lab test will help the physician identify nearly all the functional markers needed in order to effectively help their MTHFR patient.

 

There are millions of people with MTHFR and only 100′s of doctors (or less) know how serious it is.

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Did you see lots of herxing when you started lyme treatment?

Not when we first started, but when we got aggressive. Tics returned as a symptom of not being able to clear toxins quickly enough and the resulting inflammation. I'll email you.

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