5-MTHF...overdoing it?

[_Misty_]

My 7yo dd developed PANDAS/PITAND...not sure what triggered it...last May. Her initial episode was very severe, but responded to amoxicillin after 36 hours (once we tried amoxicillin!). She improved over the next couple of months until she was almost at 100% and stayed that way until a week ago. Her OCD symptoms and possibly a tic are back. It's not as severe as before, but it is bothering her very much. We found out she has MTHFR - homozygous A1298C. Her doctor started her on b12 and 5mg of MTHF about 4 weeks ago. At that time, we also lowered her antibiotic dose. I suspect that her body is shocked at the high dose of MTHF and she is over-methylated. My other thought is that she isn't tolerating the lower dose of antibiotic. I contacted her doctor to see if that could be the problem and he won't talk to me about it without doing a phone consult for $150. (I don't feel this is ethical, he messed with her treatment plan 4 wks ago and sold us $80 in supplements and she has had a poor response. I think he is responsible for advising us without additional charges. I refused the consult, so I'm on my own trying to figure out what to do.) Anywhoo... We put her back on her old antibiotic dose Friday night and we left off the MTHF yesterday and finally talked her into taking some Niacin tonight. She did seem to get a little better with the higher antibiotc dose, but after a few days there was no more improvement. She seems a little less anxious today after not having the MTHF yesterday. We'll have to see tomorrow if she is continuing to improve after having the niacin. Does anyone know/think I'm on the right track? If this seems to work, I'm thinking I'll order some 1mg MTHF and try the lower dose. I'm so lost and frustrated. She was doing so well before.

[LNN]

I think you did the right thing by stopping the high dose of methylfolate. First, it's probably best to only change one thing at a time. So I'd probably focus on settling on the "right" dose of abx first (and testing for infections) and staying there for a few weeks. Then keep that consistent and turn to methylation issues.

 

There isn't much written about A1298C mutations, but I don't recall reading about using methylfolate for this one. Yasko talks about using BH4 or TMG as the supplement to work with. At any rate, from my little experiment of one child, 5mg is far too high for a starting point for anyone. Some adults or teens (with C677T mutations) maybe need to build up to this, but probably fewer kids. And starting low and building up is probably a good idea for everyone.

 

So I'd have done what you did - stop it altogether and use niacin for a few days to mop up the excess methyl groups (also keep an eye on what she eats and avoid high folate foods like fortified cereals for the next few days). When I needed to do this for my DD (now 8 but 7yo/46 lbs at the time), we stopped methylfolate for a week while things settled. Her moods calmed down considerably. It was only when she started getting moody again that I re-introduced the methylfolate, starting with one drop @ 67 micrograms, every other day (she is hetero C677T). We've stayed at one drop every other day for 7 months and she's been more stable than she's been in years.

 

With only A1298, you may not even need any methylfolate. You may want to post a question on the mthfr.net forum or facebook's "mthfr support" page. The people there are very knowledgeable, with a few naturopaths/chiropractors who treat methylation issues who often chime in with answers. If you do decide to reintroduce methylfolate, I don't even think I'd start at 1mg. Look for something that can be given in a lower dose and built up if needed.

 

Hopefully, things will continue to settle and you'll be able to regain your balance.

[lfran]

Another way to get lower dosages is to buy Life Extension's 1 mg capsules and remove most of the contents. That's what I do. I stockpile the excess and I plan on buying empty capsules to refill them, so the excess isn't wasted.

 

I think you did the right thing by stopping the high dose of methylfolate. First, it's probably best to only change one thing at a time. So I'd probably focus on settling on the "right" dose of abx first (and testing for infections) and staying there for a few weeks. Then keep that consistent and turn to methylation issues.

 

There isn't much written about A1298C mutations, but I don't recall reading about using methylfolate for this one. Yasko talks about using BH4 or TMG as the supplement to work with. At any rate, from my little experiment of one child, 5mg is far too high for a starting point for anyone. Some adults or teens (with C677T mutations) maybe need to build up to this, but probably fewer kids. And starting low and building up is probably a good idea for everyone.

 

So I'd have done what you did - stop it altogether and use niacin for a few days to mop up the excess methyl groups (also keep an eye on what she eats and avoid high folate foods like fortified cereals for the next few days). When I needed to do this for my DD (now 8 but 7yo/46 lbs at the time), we stopped methylfolate for a week while things settled. Her moods calmed down considerably. It was only when she started getting moody again that I re-introduced the methylfolate, starting with one drop @ 67 micrograms, every other day (she is hetero C677T). We've stayed at one drop every other day for 7 months and she's been more stable than she's been in years.

 

With only A1298, you may not even need any methylfolate. You may want to post a question on the mthfr.net forum or facebook's "mthfr support" page. The people there are very knowledgeable, with a few naturopaths/chiropractors who treat methylation issues who often chime in with answers. If you do decide to reintroduce methylfolate, I don't even think I'd start at 1mg. Look for something that can be given in a lower dose and built up if needed.

 

Hopefully, things will continue to settle and you'll be able to regain your balance.

[_Misty_]

I don't know a whole lot about MTHFR...I've read quite a bit, but haven't fully understood everything. My understanding is that if you have either type you can't process folate, so you automatically need the bioavailable type. I tried to research it some more today, but had little time to devote to it. I did see on Dr. Lynch's site a recommendation for it for 1298 forms - especially if you're homozygous, with the note that there isn't a one size fits all approach.

 

As far as the antibiotic goes, she was doing great on the dose she was lowered to back in the fall...I don't know if her body has adjusted to the higher dose, or she's fighting something off right now or what. In hindsight, I wish we hadn't made so many changes at once. The thinking was that when she had improved methylation she wouldn't need as much antibiotic and maybe would eventually be able to stop taking it. Now I don't have any idea.

 

I've also stopped the methyl b12 and the 5-HTP...she is now back to exactly what she was taking a few weeks ago when she was doing great, except she is also getting some niacin. Should I keep doing the niacin every day until she has improved? I'm afraid I'll over do it. I'm also confused about the difference in 5-MTHF and methylfolate, if there is a difference. I don't know if they're the same and if the dosing is comparable. All the different names are really confusing. where do you get the liquid kind?

[nicklemama]

That does sound like a high dose.DS takes 2mg a day for compound heterozygous MTHFR. Did you have other labs done besides the mutation. Our biomed doc ran a couple of panels to see the levels of things before he gave us the protocol.

[LNN]

I would stop the niacin. By now, if you're seeing things calm down, let it run its course. Adding niacin at this point could tip her the other way. Lynch has a discussion on his site about the differences between various names for methylfolate. Confuses me too.

 

We use Yasko's Methylmate B liquid drops http://www.holisticheal.com/methylmate-b-nutritional-supplement.html - only one drop. I then use 1000mg sublingual methylB12 tablet. You can buy a combo methylfolate + methylB12 (Thorne's Methylguard) but because we need such a low dose of methylfolate, this wouldn't work for us.

 

I posted a question about using methylfolate for A1298C on mthfr support on Facebook. A dietician who treats methylation responded "it depends on what other genetic pathways are effected to know what to recommend for the person. Please get the 23andme test completed and then find a good practitioner to help you with evaluating the results and making recommendations. I have learned many times from hearing horror stories of people going to Dr treating with methyl folate and methyl cobalamin having severe adverse reactions. Instead of using Bh4 provide the nutritional substrates in order to produce it"

 

I responded by asking what those nutritional substrates are. Waiting for a response - or feel free to join the conversation yourself - the Mthfr support page is a public group. This group is coming out with an ebook on the whole methylation process - they hope to have it available in March. They also have a weekly blog radio show. You can listen to past episodes at any time. Apparently, many found the first webcast very helpful - about treating gut issues first. I haven't had time to listen yet.

[_Misty_]

Thanks for asking about that for me! I'm not on Facebook...may end up joining but haven't yet. I read the different names of methylfolate on Lynch's site...yikes! So many.

 

The doc did do a lot of labs at the same time, and everything else was normal, other than mildly elevated Anti-DNase B.

 

She is maybe mildly improved, but I'm anxious for her to get much better. Her hands are so raw from washing. She is too distracted to do her school work (homeschool). Bedtime went a little better tonight. Started motrin today - I had forgotten about that for flares. Hoping to see a good bit of improvement in a few days.

[_Misty_]

Update on dd...We left off the methylfolate and methyl b12 for 7 to 10 days and gave two doses of niacin. She might have improved a little...her anxiety is better, but OCD is still raging and she stopped eating for a few days. I got the lower dose methylfolate - 400mcg and gave it to her yesterday. I skipped it today and gave her methyl b12 500mg or mcg, can't remember which. It's about the same ratio her doctor had prescribed, only at much smaller doses. Her OCD is definitely worse today. I don't know if it's from the methylfolate or not.

[Dedee]

Its good that you are looking at this. It has really helped my daughter. I would also be looking closely at her antibiotic type amd dose. Make sure you are adequately addressing all possible infections.