Using 23andMe data for methylation guidance

[TinyTreasures]

Thanks so much for all that information! I am learning so much through you all!

 

I think that is a good idea - I am stopping the Molybdenum until my son is more back to himself, then I think I will try it again and see if it has the same effect.

I know he was already in the middle of a flare when I gave it, just not as bad as the days he was on it but that could have been completely coincidental since he improved at the same time I stopped the Moly and started antibiotics.

 

I just ordered a urine test for Kryptopyrrole. Someone on this board mentioned it months ago and I was going to get it but forgot, but I was talking to my mom yesterday and she said my nephew has Pyrrole disorder. The symptoms sound so much like my son's PANS in a lot of ways. I am also thinking about signing my son up for Mensah Medical - this would be a big expense but he is so young - not even 4 years old - and I feel like I need a Dr. who is much more knowledgeable than me to tell me what is safe for him and exactly what he needs. My nephew is their patient and he is doing so much better on their vitamin regimen...a year ago he was put into a mental institution and now he is doing great!

 

But we have a couple things coming up first - our results for the Cunningham Panel should be back hopefully next week, and then bloodwork on September 15th to check for infections.

So sick of Dr. appointments and feeding therapies and staying up till 2am researching these things...I want to go back to our calendar 2 years ago that was filled with playdates, park, library, and fun outings =(

[LNN]

My son and I have pyroluria (aka KPU if you decide to ever search the archives of the forum - it was a "hot" topic back in '11-'12 when some of us were discovering lyme). We were really struggling to hold onto gains he'd make - and they'd slip away. Or he'd start a lyme treatment and it would help but his brain fog remained. When we finally discovered the pyroluria and treated, it was like someone came into a dark room and turned on the light. I remember 3 days after he started taking supplements for it, my DH and I looked at each other with our jaws on the floor. DS was suddenly "present" in a way he hadn't been in years. It didn't cure everything, but it was dramatic.

 

I think someone else here goes to Mensah - (smartyjones?). Here are some background articles:

http://betterhealthguy.com/images/stories/PDF/kpu_klinghardt_explore_18-6.pdf

 

http://naturalinsight.hubpages.com/hub/Pyroluria-A-Hidden-Disorder

 

http://www.biobalance.org.au/_downloads/acnemjournalnov10.pdf (starts on p3)

 

If you do the test and want Klinghardt's guidelines, PM me and I'll email them to you. Some labs only require one urine catch but Klinghardt suggests doing a 24 hr catch. Pyrole levels fluctuate thru the day, so one catch may not reflect what's going on the rest of the day. If you combine all urines for 24 hrs, he feels you get a better daily average. Also remember to be off of all vitamin and mineral supplements (staying on abx is ok) for 5-7 days before the test.

[nitshel]

I've been thinking about something and wanted to share with the forum. I know our kids have some defective genes and we're trying to get around those issues but my hypothesis is that EVERYBODY will have mutations.

 

In fact I'll bet that there are a bunch of people - adults and kids who have the same mutations as my DS but they are perfectly normal. So this means that there is some other mechanism in place - epigenetics (environmental factors that turn genes on / off), infections, immune issues, too much hygeine...I know this is a very young field of research but it just seems like "bad genes" is not really the cause of this - its probably a bunch of circumstances that came together....

[Dedee]

I have been using a Moly supplement capsule that I get from Amazon that is 30mcg. I can't think of the brand right off hand and I can't access Amazon from the computer I am on. It is easier to use and keep the dose in line but now I worry about whether it is the right kind. Hmmm.....

 

Dedee

Edited September 10, 2013 by Dedee

[peglem]

I've been thinking about something and wanted to share with the forum. I know our kids have some defective genes and we're trying to get around those issues but my hypothesis is that EVERYBODY will have mutations.

 

In fact I'll bet that there are a bunch of people - adults and kids who have the same mutations as my DS but they are perfectly normal. So this means that there is some other mechanism in place - epigenetics (environmental factors that turn genes on / off), infections, immune issues, too much hygeine...I know this is a very young field of research but it just seems like "bad genes" is not really the cause of this - its probably a bunch of circumstances that came together....

Agree. I know of a wonderful, perfectly functioning grown woman who has the exact same MTHFR mutation as my daughter. Okay, she does have celiac disease.... Anyway, was discussing w/ pediatrician and he thinks the timing of fortifying foods/flour w/ synthetic folic acid (including baby formulas) and the dramatic increase in autism is more than just a coincidence. And I think, in my daughter's case- hindsight tells me that I was B12 deficient during pregnancy (docs dismissed my concern over symptoms). Had so much trouble getting her to finally eat solids- she was borderline malnutritious...frequently ill. Yeah, lots of environmental contributions...

[LNN]

In fact I'll bet that there are a bunch of people - adults and kids who have the same mutations as my DS but they are perfectly normal. So this means that there is some other mechanism in place - epigenetics (environmental factors that turn genes on / off), infections, immune issues, too much hygeine...I know this is a very young field of research but it just seems like "bad genes" is not really the cause of this - its probably a bunch of circumstances that came together....

 

I totally agree. I have mutations similar to my son's and yet I don't have any Pandas issues. If there are "Pandas" genes, I don't think they're found among the 30 or so snps looked at in the methylation cycle. (tho if it's a perfect storm of numerous mutations, I wouldn't be surprised to see COMT or MAO among them.) So I don't look at methylation as a "cure" or workaround for Pandas. I think you still need to fix the infection and use anti-inflammatories and all that. I just see methylation as a way to make the foundation stronger, to help the body not have a shortage of necessary supplies to make neurotransmitters and most importantly - to help the body survive an illness without running out of supplies before the job is finished.

 

I subscribe to the idea that pre-Pandas days, my kids were running at only 80% on an average day. Then when they got sick, their bodies needed 150%. What limited resources they had were diverted toward fighting infections and they were left short-supplied when it came time to make neurotransmitters and to re-fueling the immune system. They were going into war empty-handed. I believe my son (maybe my daughter) still has whatever genetic mutations that make him susceptible to strep. I know if he gets a bacterial infection again, I'm going to see a return of symptoms. Treating methylation blocks hasn't changed that. But my hope is that treating methylation issues may help his body better fight the next infection and may keep him from a bad episode. And maybe, just maybe, it will help him ward off some infections before they have a chance to invade in the first place. I also know that when he's healthy, treating methylation issues has given us additional gains academically and mood-wise, bringing that pre-Pandas 80% up to the 100% I'd always known was possible but didn't know how to get there.

 

(I use the term methylation loosely - for me, it also includes supplements like gaba and diet that keeps an eye on glutamate. I'm not just talking about the 30 or so snps.)

[nitshel]

Hi- does anyone know where we can get hydroxyB12? We tried a bunch if stores but all have cyano or methy forms. Thanks!

[LNN]

Hi- does anyone know where we can get hydroxyB12? We tried a bunch if stores but all have cyano or methy forms. Thanks!

Amazon carries Perque, which is hydroxyB12 (or possibly a hydroxy/methyl blend - can't recall). Amazon may carry a few others as well. Also check Yasko's Holistic Heath online store. My DH uses Perque.

[nitshel]

Thanks LLM - From several thread I've read, it seems that one needs to also provide folic acid in some form alongside the B12. Is this true? If so, we will need a non-methylated form - correct (since our DS is COMT +/+) Is there a specific brand you trust / use?

[LNN]

Folic acid is generally thought of as "bad" or unusable if you're MTHFR +/+. Less ink is given to whether you can use folic acid if you're only +/- tho the literature seems to always end up implying you'd do better on a methylated form of folate regardless of whether you have one + or two. So folate=bad

 

However, some stuff I've read suggests you need folinic acid even if you have MTHFR issues because folinic acid is used for things other than the methylfolate+methylB12 marriage that creates ATP.

 

I do not specifically supplement my MTHFR +/- family members with folinic acid for three reasons. The first is that it's already expensive and their pill burden is already high (about a dozen individual vitamins/supps per day). The second is that I've already tied myself in knots on this subject numerous times and my brain just doesn't have any more room to make a spot for what role folinic acid might play or where I might find just the right dose, product, etc. But the most honest answer is that I'm just tired. I don't religiously restrict regular folate from my MTHFRs diets. They consume fortified breads and cereals and food stuffs. So they're likely getting plenty of folate that, because they're MTHFR +/-, they "should" be able to convert into folinic acid and/or methylfolate at about 50% efficiency. Based on moods and behaviors, this approach seems to be working, so it's close enough for me.

 

That's not to say this would be true for everyone or for people who are MTHFR +/+. It just seems to be ok for my family and I've made a practical decision to leave things be, regardless of whether it's the "best" I could do. It's my best for right now.

 

As you said, with the COMT +/+, using hydroxyB12 is probably better for him than methylB12. You may want to look at niacin to further help with overmethylation. But it'll be trial and error. Sometimes I google methylation questions and hit on threads from other forums, even discussions several years old, from the autism and chronic fatigue worlds. You can find some good (and not so good) ideas and products that way too.

[nitshel]

Thanks LLM - Perque seems to be all hydrocobalamine (sub-lingual pills). These are 2000 mcg pills - I plan to start with one pill and then go up if needed - how much do you use for your children?

 

Am still noodling on the folate - apparentlyfolate and b12 are co-factors so I dont want to provide one without enough of the other....

 

On a separate note, ever since we began the moly, DS has had flu-like symptoms (2 weeks now), steadliy becoming worse - he had terribly stuffed sinuses last 2 days. Not sure if this is a real cold (nobody in his school / home has it) or if its somehow related to Moly doing its stuff.

We are also using the suplate strips (from Amazon) - the colors are so hard to differentiate but it looks like we are still at the 1200 level even though we have cut down on sulphur foods...hard to tell where on earth the suphur is coming from....

[LNN]

My DH takes one Perque. My DD prefers SourceNaturals methylB12 1000mcg sublingual - more for the texture than the effect. But it works, so we're all happy.

 

Mthfr.net has some articles on folate that might help you sort thru things in your head.

 

On the moly, we didn't have any adverse reactions, so I can't share any lessons learned. You might try reading yasko's book http://www.dramyyasko.com/wp-content/files_flutter/1327512160_9_1_1_8_pdf_02_file.pdf to see if this sort of reaction is within expected responses (e.g. he's now able to start fighting a virus that's been there but his body couldn't fight before) or if it's a sign to lower the dose...or? When I have an unexpected response, I post a question on the FB mthfrsupport page and see what others have to say. They're mostly adults and don't come at it from a Pandas perspective but many there have CFS and do get the chronic infection perspective. I also want to say sulphur dumping can happen for awhile, even after you change diet. I might've read that in Yasko or heartfixer of I could be maming it up in my head. Sorry i can't be more helpful. Although 3 in the family have CBS, none of us had a negative response, so I don't have a depth of knowledge.

[nitshel]

Update on our DS...After the first few days of starting the B12 (Hydroxy) his facial tics began to increase in frequency - we've backed off for now but they are still there. I recall seeing some threads on the forums where some have had such a reaction - any theories on why this could be happening? We have not provided methylfolate - could that explain it (i.e. lack of the co-factor)?

[LNN]

Since your DS has CBS+/-. it's possible you're seeing some sort of detox issue. You may want to read yasko's book http://www.dramyyasko.com/wp-content/files_flutter/1327512160_9_1_1_8_pdf_02_file.pdf and treat CBS first and then re-introduce the hydroxyB12/methylfolate. My son tics when he has a detox/herx issue (and he doesn't have CBS, can't imagine how bad it might get if he did).

 

If you feel like you need some medical support on this, this site lists practitioners who treat methylation issues (just fyi - not all are MDs).http://www.mthfrsupport.com/practitioner-2/

[nitshel]

Thanks LLM- I should have mentioned that we indeed are treating CBS first. DS is on 70 mcg of Moly per day. We tracked his suphur levels using strips and only began Hybroxy b 12 when levels were ~ 800 - whic is why this is a little out of left field....