Methylfolate experiment

After getting the MTHFR testing back we began methylfolate and P5P. He had already been on methylcobalmin for probably a year which was helpful. Initially he complained that after he took his Methylfolate/P5P supplement it made him have to pee. I haven’t heard this complaint in a while so I think that stopped.

Lately he’s been really irritable, beyond what is normal for him.  He’s just not himself at all. He’s been very argumentative and doesn’t want to do anything, even things he normally likes. He was obviously feeling bad and I couldn’t figure out why.

It dawned me on two days ago…what about the methylation supplements?!?!?

I did not respond well to methylfolate but he seemed just fine when we started it. So I assumed we were go to continue giving it to him. That was some 9 months ago but what if what’s good then isn’t good now? What if he had built up his levels and didn’t need it now?

I began searching the web and found an article by Ben Lynch describing the problems some people have with methylfolate. He talks about how someone could do well initially and then it can all fall apart later on.

So on a hunch I stopped giving his morning 800 mcg methyfolate supplement. Guess what? He is back to himself!!

He is still taking his MB12 because he was on that prior to the methylfolate and did well on it for over a year.

His CBC blood work is indicating he is not B12 anemic anymore…hmm..perhaps he doesn’t need as much folate like Ben said. Ben suggests that it might not need to given daily in some people. So we’ll take a break and then in a few months, give it just a few times a week at a lower dose.


More pieces of the puzzle (updated)

I decided to find a holistic physician that works with children to help us sort out what is going on with my son the past few months. While things change with puberty onset, I see things that tell me this is more than just puberty. I wanted to rule out nutritional deficiency and make sure this thyroid was working. I also wanted to see she could help us figure out this mysterious sensory thing.

I’ve noticed he became very tired the past few months even though he was sleeping sometimes 10-11 hours. He isn’t sleeping like he used too either. He’s up until past midnight, wide awake but his eyes are blood-shot (he is tired, but wired). He says his brain is too busy to sleep. Then of course good luck getting him up in the morning if he went to sleep somewhere between 12:40am and 3am. Worse yet, if he was sleeping before midnight, he was waking up sometime after 3am and unable to sleep. Plus..he just looks pale to me.

We spent over an hour with the new doctor going over everything from birth to now. I had to fill out a very extensive list of questions about everything from my pregnancy, his birth, his development, what he eats, his sleep schedule, his mood…etc. I was already impressed because any doctor we have seen in the past has never really looked at the full picture and history.

These are the labs the doctor ordered:

  • Comp Metabolic Panel
  • Ferritin
  • Free T3
  • Insulin
  • Fasting glucose
  • DHEA sulfate
  • Fibrinogen
  • Reverse T3
  • Pregnenolone
  • RBC Magnesium
  • Candida IgA/IgG/IgE auto-antibodies
  • 96 Delayed Food Allergy panel.

These are the labs I brought from the primary care doctor: TSH, Free T4, iron, Vitamin D, HCT, cholesterol/HDL.  This is about all they would check for us.  I was told the labs were normal, I got a copy and  he had low iron and low vitamin D. So..NOT normal.

What the extensive testing revealed:

  • He is homozygous (two copies) for MTHFR C677T
  • His adrenals are in wired/tired stage and need more support
  • He needs methylated B vitamins BADLY
  • He needs Phosphatidylserine at night
  • His DHEA is low
  • His Pregnenolone is also low
  • His fibrinogen is low
  • His Free T3 could be a bit higher
  • He has low ferritin and iron
  • He is low in Vitamin D
  • His glucose and insulin are elevated.
  • He needs a higher dose of MB12 than what he is on.

What supplements were recommended:

  • DHA
  • Methylcobalmin-B12
  • Methylated B complex
  • Phosphatidylserine
  • D3- 10,000 IU per day
  • Iron
  • Buffered vitamin C
  • Probiotic
  • Betain with meals or ACV
  • Adrenal Cortex in the morning
  • L-Theanine
  • Pregnenolone
  • A multivitamin with B’s, iodine
  • Selenium
  • Zinc
  • Protein
  • Chromium with meals* (my recommendation to help with managing the blood sugar issue)

He was already taking Adrenal cortex glandular, MB12 (non-GMO source), vitamin D, probiotics and iron. We need to continue these but raise the doses.

It seems from everything we discussed at the follow-up appointment that much of the issues we are seeing with low hormones, and deficiencies are related to MTHFR which led to low vitamin levels and adrenal function. She was also very pleased that I had done so much already and that we had already done so much chelation. I found out I had one copy of MTHFR only last year, so I suspected he had at least one. I didn’t suspect it would be two copies though which puts him at a 30% methylation rate. Sigh….

We have begun adding in the new supplements slowly. We do have a problem with tolerating fish oil, so I’m sorting out how to get DHA that won’t cause him to be nauseous. For years he took cod liver oil without issue, but about a year ago it began making him nauseous. I cannot get betaine or ACV into him, due to taste or unavailability in chewable form.

Now if only there was a palatable methylB complex for kids that can’t take capsules…….oh there I go dreaming that again!**

Update: Just a few weeks into adding in these changes and he is falling asleep by 11pm and sleeping the entire night!

Update: January 25, 2017: We discontinued pregnenolone and only supplemented at 5mg which was well below what the doctor recommended. I noticed he felt better on it for several weeks but then we began noticing it was causing anger so we stopped. (I had the same reaction to this supplement even though labs warrant its use). I did find a chewable methylated B that we like by **Jarrow Methyl B12 and Folate. We are also using Smarty Pants for Omega’s and additional B’s. While the dose is far less than the amount of DHA he probably needs, I’m happy to find something he will take so he can get some which is better than none. Perhaps in the future we will find a DHA supplement that doesn’t cause nausea for him.


Urine Amino Acids Test

While my blog is about the edge of autism, the reality is that as parents we too have health problems from toxic exposure or other things. As I mentioned in a previous post we are a MTHFR family. I can safely assume that at least one of my two children, maybe both have at least one copy of C677T. I already have confirmed I have it and it seems to be affecting my health based on how I feel lately and my lab work. Certainly it isn’t for lack of healthy diet, detoxification, cleansing and addressing viruses and bacteria. I’ve done a lot of things to help regain my health already.

I wanted to share and talk about methylation issues and what I learned from my urine acid test from Doctors Data.

My tests revealed that the following amino acids are very low:

  • methionine
  • isoleucine
  • taurine
  • arginine
  • histidine
  • tyrosine

The following vitamins and minerals are low:

  • magnesium
  • B6 as P5P
  • trace minerals: manganese, molybdenum, zinc
  • MB12/folate
  • iron
  • ferritin
  • dhea
  • vitamin D
  • salt

My testing verified that I do have malabsorption and poor digestion. This has left me with a lot of deficiencies. Most of the categories on this test were very low. My urea cycle is not working well likely due to mineral deficiency. My magnesium markers indicated a severe need for magnesium. My methylation cycle is not working properly. My CBS is dys-regulated. My detoxification is very poor also…the list goes on.

Hmm..that might explain why I feel so fantastic….(yes I’m being sarcastic because I have been struggling all year with the return of fatigue and hair loss)

The doctor prescribed a plan of treatment for me that will take 3-6 months. The concept is that amino acid therapy will jump-start the gut and make methylation work better. I will also have to take a bunch of vitamins with my amino cocktail.

The plan is:

  • B6 as P5P twice a day
  • increased my MB12 from 5,000mcg a day to 20,000mcg
  • multi-mineral supplement for trace minerals
  • amino acids: trytophan, arginine, histidine, isoleucine, leucine, lysine, methione, phenylalanine, theronine, valine, P5P, Alpha-ketoglutarate, taurine. (doses were given based on my lab testing)
  • Zinc at 50mg a day
  • Vitamin D
  • Betaine HCL with pepsin with meals
  • glutamine daily

In three months we re-test urine amino acids and a bunch of blood work to check:

  • ammonia
  • vitamin A
  • porphyrins ( I will be curious to see what this show after 114 rounds of chelation)
  • GGT
  • thyroid panel
  • RBC magnesium
  • Homocysteine
  • Vitamin D

I did not expect my labs to be so bad but I knew something wasn’t right based on how I feel lately. Plus the gut is part of my ongoing thyroid problem and at 3 grains a day of thyroid meds, I urged my doc to look at my gut function. And well, there you have it….it isn’t working!

Part of the reason I felt it was important to post about this is because as an adult who was mercury poisoned, carries MTHFR, and had a child on the spectrum, this sort of condition is common in autism too. Many of our children suffer malabsorption, have poor digestion and are very deficient in a lot of vitamins, minerals and amino acids. This would slow down or disrupt their methylation too.  Methylation problems cause various side effects that we don’t have to live with if we have the proper testing and supplements to alleviate it.

I have done the chelation and still continue until I’m certain mercury is no longer on my list of problems, but there are many facets to reclaiming your health after being poisoned.

This also helps me be proactive in preventing my children from the same fate. They will know what to avoid in their environments and what supplements to take to help their bodies run well.

I’ll keep you updated on my progress!