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I've been watching all the posts about methylation/sulfation with interest. Took DS8 to see a biomed doctor 6 wks ago and had blood and urine drawn for testing. Our follow up to find out results was today.

 

Low in B6, B12 and other B vitamins. He's got other markers that indicate methylation/sulfation issues. He has an overgrowth of Klebsiella in his gut. High copper. Severe allergy to baker's and brewer's yeast and Swiss cheese, in addition to the environmental allergies he was tested for by an allergist. Low in tryptophan (no wonder he needs melatonin to get to sleep at night).

 

He's going to be starting methylfolate supplement and B12 shots right away. He has other supplements to start but we are staggering the starts to one at a time to see how he reacts.

 

I have a lot of reading to do. Just wanted to post this and encourage others to consider investigating methylation/sulfation and other factors. DS had IVIG nearly a yr ago and has done pretty well but he still has some OCD/anxiety left and he flairs w/ exposure to strep and when he gets sick w/ colds/viruses. I had a hunch after reading posts here about methylation/sulfation and I'm glad I followed through. We'll see how treatment goes.

 

The biggest hurdle will be instituting NO YEAST. That means no bread or crackers, among other things, even gluten free because it all has yeast in it.

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Yay! So glad you are getting some answers! Going to a DAN was the best thing we did because the tests revealed stuff we had no clue about. The treatment and diet have seen steady improvement in DS18's health, mood, behaviours, OCD, anxiety, etc, and each time I think he's plateaued out and that we're not going to see any further improvement, something else improves. And his milk sensitivity has dropped away. Yay for a good DAN dr!

 

Edit to say...there are good yeast free alternatives around...start looking through the health food stores. We buy up and freeze and/or stash!

Edited by Ozimum
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It sounds like you have good reason to look at this stuff. My biggest advice is GO SLOW. If you're going to start supplementing with methylfolate, think in terms of 200-500mcg to start (depending on weight). Very common for people with deficiencies to have short honeymoons and then "herx-like" responses, especially if you start too high. Think of starting a conveyor belt or treadmill. You don't jump on when it's already going 5mph. You start at a walk and speed up gradually.

 

If it were me, I'd add a low dose of methylfolate. Then before increasing that, my next step a week or so later would be to add a low dose of tryptophan (like 150-200 mg), then a week or so later, add zinc (certain types are better absorbed), etc. You might also look at tyrosine in addition to tryptophan. It causes anxiety in some, but helps my kids a lot. Then once every missing piece was added a little bit, I'd go back to the methylfolate and increase each supplement a little bit again. You're better off having a little of everything than having "enough" of one thing but still be deficient in others.

 

Adding zinc has had two effects on my kids. First, we had an awesome 3 week honeymoon. But then we went through a regression for a few weeks and we backed down the dose, then when things calmed down, we built back up. Second, for my daughter, who had high copper, the zinc is a natural chelator. High copper can cause bi-polar-ish behaviors. So we saw that worse-before-better thing before steady improvement. Adding something like charcoal (away from everything else) will help with binding toxins being excreted.

 

I totally get the no yeast anxiety. I don't know how my family would handle it. But it's possible that after you get everything corrected, you may be able to add things back. It could be a sensitivity rather than a permanent allergy. You may want to ask about digestive enzymes that contain Dpp IV.

 

We've found garlic pills to be a big help with gut yeast. My DS does poorly on Sacc Boulardis, which is a yeast probiotic. So remember to check what's in your probiotics.

 

Gotta love biomed! We'd be stuck and lost without it. Changed everything for us. It sounds like Yasko's DVD and book "Autism: Pathways to Healing" might be a good reference to have on hand as you go through this. I recently posted some detox ideas as well - some things to ask your dr. Sounds like you have much to be hopeful about!

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LLM- Thanks for the good advice. DS is very low in tryptophan and I am off to buy some today. His tyrosine and zinc are normal. Would you add zinc anyway?

 

DS has been taking sacc boullardi for more than a yr now. He didn't test for it. Now I am wondering. The two things that were tested that he has a serious allergy/sensitivity to are brewer's and baker's yeast, plus swiss cheese. That's weird. He never eats swiss anyway.

 

Can't do the garlic pills. He is showing a mild garlic allergy.

 

I was given a list that I bought at the clinic yesterday of what to give DS.....

 

new multivitamin to replace the one he was taking, digestive enzymes- Klaire Labs Interfase Plus and the label says it has DPP-IV in it, ProThera l-methylfolate, Klaire Labs P-5-P (pyridoxal 5-phosphate dietary supplement(B6 metabolite) and Biocidin.

 

Missed one- Xymogen ALAmax CR- controlled alpha-lipoic acid- combats oxidative stress, facilitates whole body glucose utilization, regenerates Vit C,E and CoQ10, regenerates intracellular glutatione, enhanced w/ biotin.

 

The B12 shots have been ordered at a compounding pharmacy, which happens to be near my home. I've got to buy tryptophan and borage oil today. I've been giving him an Omega 3 (Nordic Naturals Ultimate Omega). Let me tell you, it works!!! His omega 3's are sky high. He needs the borage oil as an omega 6 to balance his omega 3.

 

I was given an order in which to introduce the new supplements. Methylfolate is number 1. B12 is number two and we'll start that on Monday.

Edited by nicklemama
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It sounds like your doc has a good handle on things and isn't leaving it to you to grope your way thru.

 

On the Sacc B - everything I've ever read has been positive. But the two times we've tried it, DS has struggled with erratic, yeast-like behaviors. Can't say for certain it's the Sacc B. But it improves when we stop the Sacc B, and there are plenty of other options, so I just don't go there anymore. I took it for a time and felt it made me bloated/gassy. Just isn't worth it for us, which is too bad, since it's more affordable than other probiotics.

 

There are other natural anti-yeast things besides garlic - just can't think of them right now. You can google and find suggestions on the many yeast sites out there. Did your doc suggest anything?

 

We used the ALA-max Cr for a time. DS felt it helped a little. But it got to be expensive as we added other supps, plus for a time we had metals on our radar and ALP chelates mercury, but it crosses the BBB, so if you have more mercury in the body than in the brain, the ALA could theoretically move the mercury from the higher concentration (the body) into the lower concentrated area (the brain). That's Andy Cutler's theory anyway. Not sure how much science there is to back him up, but it was enough to make me consider alternatives. But would consider it again now that metals aren't our concern - as it is a good anti-oxidant. I like quality resveratrol for this as well.

 

We use Evening Primrose Oil as our Omega 6 (one of the anti-inflammatory types of 6) - so one more option for you.

 

As for zinc - plasma blood tests are considered unreliable, even by mainstream medicine. Not just for zinc but other minerals and vitamins as well. My kids and I have a condition called pyroluria - our bodies make too many pyrolles (a waste byproduct of blood synthesis) and pyrolles stick to zinc and B6, taking these things with them when they're pee'd away. So our plasma levels look fine, but our bodies were still depleted because we pee'd the stuff away before the body could use it. It's tested thru a urine test with Doctor's Data. Because of the pyroluria, we need to mega-supplement in order to get just enough. When we did this (using Biopure Core as the supplement), we saw big improvements. I'd ask your doc about it. Just FYI - http://betterhealthguy.com/joomla/images/stories/PDF/kpu_klinghardt_explore_18-6.pdf

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Thanks for all the recommendations. I found a yeast free bread today and Better Health food store and some cous cous that is yeast free. Took DS shopping w/ me to find things he might like. He's taking this really well. Wonder when the honeymoom will be over and he'll be sick of it?

 

Amy Yasko's book is currently out of stock on her website and at Amazon. I found on her website you can download the book for free!!!!

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Nicklemama,

 

Glad to hear that you have gotten some answers and hopefully you will see some results. We recently found out that our daughter is MTHFR positive (for mutation) and have started her on Methylfolate. Our Integrative Medicine practitioner wanted to only start with the Methylfolate (which we did a few weeks ago), and now start Enhansa. The Enhansa is supposed to be a potent anti-inflammatory but also help break down and excrete toxins that sometimes build up in those with MTHFR mutation (including yeast). We are going very slow with that also. So far we have had good results. The only issue we have had so far is some diarrhea and a couple of headaches. My daughter seems to be showing gradual improvement. Although I am a little worried about the previous post regarding a "honeymoon period". Hope we aren't going to just regress again later. I am trying not to get my hopes up. Seems so many times I think we have found the answer only to fall back again. I have ordered Niacin and B-12 but it would be some time before starting those. We will probably wait another couple weeks to see if we get any reaction from the Enhansa first. I know it's too early to tell, so my husband and I have barely even spoken of it, but the last week or two have been pretty good. We are holding our breath and just praying and giving thanks for each day of peace we get.

 

I really want to know how things turn how for your son. Please keep me updated on your progress. Thanks so much for sharing.

 

Dedee

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DeeDee- I will definitely update. We are on day two of methylfolate. Yesterday was a teachers workday for report cards so he had no school. He was home all day and he was a little emotional. More than usual but not terribly. He cried when he lost at a Wii game and he cried just before dinner when the ice cream man came around (who comes around at 6pm???) and his dad told him no. That said, I am thankful because when he's not doing well, no usually means anger rather than crying.

 

I am going to ask his ped to draw blood for the MTHFR gene. I think I'm going to ask her to do the urine KPU test, as well.

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  • 4 weeks later...

LLM

What is the exact name of the test you took for pyroluria. You mentioned that the zinc plasma is not accurate. I want ds to get this tested next week by ped but I want to make sure I am asking for the correct test. Did you do a morning urine sample or a 24 hour collection. Any info on this test would be so helpful. I really think he has this so I want to make I get him tested correctly.

Thanks, Mar

 

 

 

It sounds like your doc has a good handle on things and isn't leaving it to you to grope your way thru.

 

On the Sacc B - everything I've ever read has been positive. But the two times we've tried it, DS has struggled with erratic, yeast-like behaviors. Can't say for certain it's the Sacc B. But it improves when we stop the Sacc B, and there are plenty of other options, so I just don't go there anymore. I took it for a time and felt it made me bloated/gassy. Just isn't worth it for us, which is too bad, since it's more affordable than other probiotics.

 

There are other natural anti-yeast things besides garlic - just can't think of them right now. You can google and find suggestions on the many yeast sites out there. Did your doc suggest anything?

 

We used the ALA-max Cr for a time. DS felt it helped a little. But it got to be expensive as we added other supps, plus for a time we had metals on our radar and ALP chelates mercury, but it crosses the BBB, so if you have more mercury in the body than in the brain, the ALA could theoretically move the mercury from the higher concentration (the body) into the lower concentrated area (the brain). That's Andy Cutler's theory anyway. Not sure how much science there is to back him up, but it was enough to make me consider alternatives. But would consider it again now that metals aren't our concern - as it is a good anti-oxidant. I like quality resveratrol for this as well.

 

We use Evening Primrose Oil as our Omega 6 (one of the anti-inflammatory types of 6) - so one more option for you.

 

As for zinc - plasma blood tests are considered unreliable, even by mainstream medicine. Not just for zinc but other minerals and vitamins as well. My kids and I have a condition called pyroluria - our bodies make too many pyrolles (a waste byproduct of blood synthesis) and pyrolles stick to zinc and B6, taking these things with them when they're pee'd away. So our plasma levels look fine, but our bodies were still depleted because we pee'd the stuff away before the body could use it. It's tested thru a urine test with Doctor's Data. Because of the pyroluria, we need to mega-supplement in order to get just enough. When we did this (using Biopure Core as the supplement), we saw big improvements. I'd ask your doc about it. Just FYI - http://betterhealthguy.com/joomla/images/stories/PDF/kpu_klinghardt_explore_18-6.pdf

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The biggest hurdle will be instituting NO YEAST. That means no bread or crackers, among other things, even gluten free because it all has yeast in it.

 

 

There's a bread by EnerG that is made gluten free/yeast free. But, there may be sugar in it (I would double check the ingredients list.) Good luck.

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Mar - here's a thread that talks about the test http://www.latitudes.org/forums/index.php?showtopic=17401&st=0&p=139120&fromsearch=1entry139120

 

You can't order it from a regular lab. But this thread lists two of the labs that will test for it. We did a 24 hr catch, as Klinghardt feels that pyrole levels fluctuate thru the day and a 24 hr sample gives a better result. But the labs say you can do one catch.

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