More Methylation

[MomWithOCDSon]

It says it's for "professionals," but it's really not especially difficult to understand. And he talks a little bit about every aspect of the issue.

 

Dr. Kendall Stewart - Methylation

[LNN]

Thanks! Love seeing info "validated" by reading it from multiple docs.

[kim]

Nancy&LLM,

 

Since you are looking at this issue, I wonder if you would both take a look at this thread

 

http://www.latitudes.org/forums/index.php?showtopic=5082&st=0&p=35657&hl="cam%20kinaseii"%20&fromsearch=1entry35657

 

From the paper Nancy posted

 

A central pathway in the body that is particularly

amenable to bio-molecular genetic weaknesses is the methionine/folate pathway.

 

When so many were getting high CamK II results, I became interested in "methionine sulfoxide reductase," and the connection to it's ability to return CamK to lower levels.

 

Look at the info on that thread regarding "MsrA"

 

Would really like to see if either of you find the info there as intriguing as I did and wondering how you feel about supplementing in relationship to it.

[LNN]

Hey Kim! I've missed your posts! Wow, I look back at those old threads and am always struck at how incredibly technical and well-researched those conversations used to be. I was truly humbled by some of the brains (including yours) that were trying to digest all this stuff for the rest of us. The conversations you and Buster used to have - always had to get out my dictionary

 

I did find it very intriguing - and will now have to spend days trying to understand it. At this point in my thinking, I do feel that our kids have block(s) in their pathways (be it methylation pathway, trans-sulfuration pathway, Krebs cycle or any of the others I've yet to learn about). These blocks prevent the body from responding properly to infection and health challenges. It's like asking the body to fight a battle with inadequate weapons and supply lines. So more and more chronic infections set up shop and alter the whole system to better suit its needs (hey, germs, now that we've confused the T-cells, lets block the detox pathway so more heavy metals accumulate that we can use in our biofims). The blocks lead to more and more problems that abx alone can't solve. (IMO)

 

So I'm very in favor of finding the block(s) and supplementing to build bridges over/around/thru those blocks. In an episode, I'd be really intrigued with the idea of MsrA. I would see it as the King of Anti-inflammation. I've also come across betaine/TMG as a possible suppressor of TNF-alpha inflammation and plan to study that more as well.

 

In a remission phase (where my DS seems to be), I'm trying to supplement at various points where I suspect blocks exist and am hoping that once the blocks (and chronic lyme infection) are cleared, we can reduce supplements and be left with only those that are needed for genetic/lifelong blocks (in our case, probably folate and zinc/B6). My DH commented this morning that he feels DS is doing much better as a result of our new focus. When DH starts joining the chorus, I know we're onto something.

 

Have you tried S-Methyl-L-Cysteine to supplement?

Edited November 29, 2011 by LLM

[MomWithOCDSon]

Hey Kim!

 

I just checked into your previous thread and post briefly . . . I will definitely have to give it a much fuller read before I can comment intelligently, and even then, I'm not sure I will have much to offer. I pretty much rely on the "_____ for Dummies" versions of the scientific papers, as my background in that regard is not all that well-founded.

 

On a general basis, I'm moving currently thinking along the lines of LLM in terms of the various pathways and a cycle of dysfunction that gets "kicked off" and continues to foster dysfunction along the channel. I think it is all a delicate balance, too, and if I stumble across a working, supplementation solution, let's call it, for my DS, it will be just that . . . a stumble. Poor thing's basically a genea pig for my rudimentary research and trials with changing types, formulations and levels of supplements to try and find what works best for him. The methylation cycle and, more specifically, the pieces that play into histamine production and uptake, have yielded some fairly dramatic results on our side, so that's where we've been focused of late. Still, even when I employ patience and stick with a certain supplement protocol for an extended period, it's very hard for me to tweaze out specific cause and effect results, especially when my kid (like a lot of others) has an immune system that reacts to everything from environmental allergies to the common cold!

 

One thing, in particular, I'm trying to wrap my little head around more fully is "balancing" the supplementation so that I don't inadvertently over-compensate for one piece of the puzzle and, in so doing, knock things akilter again.

 

I do find the MrsA info intriguing and will, as a result, have some more research to do this weekend when I can find a bigger block of time!

 

Thanks for checking back in and "stirring the pot" with some new/rejuvenated info! Lest I ever get the unwise idea that I might be starting to figure this thing out . . . . . .

[dut]

LLM - that Yasko book is excellent (not got to the DVDs yet). I will have to re-read a few times to try and get a handle on it

 

I highly recommend it for anyone looking at methylation. She goes way beyond the MTHFR gene. It really makes sense. Lots to take in and lots to try but it feels like the right way to go.

 

I also haven't been able to understand why B12 activates some (other than the high histamine issue which I hadn't been able to get my head around fully) but she appears to say it's 'cos if you have other blocks, other than just MTHFR, then you need to clear some others first before adding B12 (amongst others) or you can make things worse.

 

From what I am reading she seems to think that altho' the MTHFR SNPs, single nucleotide polymorphisms I think , are of issue they are less of an issue than other SNPs that she cites need addressing first.

 

Really good explanations too of why meth impacts the immune system, metals and viral loads and even how it can skew towards autoimmune.

 

thanks

[LNN]

See, I wasn't that blown away by the book - probably because I don't have the genetic testing info that you have at your disposal. (DS's MTHFR test came back normal, still waiting for DDs). But if you like the book, you'll be blown away by the first DVD. About 75 min into it, she goes into a 20 min explanation of what she feels is happening with pandas specifically and how glutamate/calcium/TNF-alpha all do their thing to the brain. It was, for me, a really powerful discussion.

 

Even with DS's normal ability to use folate, I am still of the feeling that he has a folate deficiency. The good news is I don't have to spend extra money on methyl-folate and can give him regular folate. But I'm still starting a trial of supplementing to see if it takes us further. Adding the zinc/B6 over the past few months has made a big difference. Last week's teacher conference was the first I've had in 3 years where the teacher couldn't believe DS was sick, where he seemed on par with the other kids ability-wise. This was huge for us. In the week I've been giving the folate, he's been much more patient with his sister and very even tempered.

 

I too am confused by the whole B12 thing. It would seem that in my family, excess homocysteine is a big problem. So I'm not sure how Yasko and virtually every other doctor can say everyone can benefit from B-12. DH tried a sub-lingual supplement from his doc and developed a weird tingling/stinging sensation in his legs, so he stopped after only a few days. I'm not getting the B12 thing or how to encourage that homocysteine back to methionine conversion. Ideas?

 

I'm sure most members have long ago stopped reading the methylation threads. But for anyone who's kid(s) continue to struggle beyond the two months after an obvious infection, I really think methylation blocks are playing a role. But it's really hard to explain. I find myself understanding more and more as I read, but still not well enough to try to explain it to someone else. The Yasko DVD belongs on every geek's Xmas list. It just changed my entire way of framing the problem and how to treat it. Not that everyone will walk away with the same answers. Not that yasko is 100% right or that she isn't somewhat skewed by a profit motive. But that's when I also turn to Rich Vin Konynenburg's writings on chronic fatigue. When you start to find the same info presented from multiple disciplines and reaching the same general conclusions, it feels more and more "right" - which is what I loved abut Nancy's original post and the article. Focusing on the body's fundamental ability to perform at 100% - and supplementing the weak cogs in the system - seem to be making a huge difference for us.

[JAG10]

 

Last week's teacher conference was the first I've had in 3 years where the teacher couldn't believe DS was sick, where he seemed on par with the other kids ability-wise.

 

 

I'm sure most members have long ago stopped reading the methylation threads. But for anyone who's kid(s) continue to struggle beyond the two months after an obvious infection, I really think methylation blocks are playing a role. But it's really hard to explain. I find myself understanding more and more as I read, but still not well enough to try to explain it to someone else. The Yasko DVD belongs on every geek's Xmas list. It just changed my entire way of framing the problem and how to treat it. Not that everyone will walk away with the same answers. Not that yasko is 100% right or that she isn't somewhat skewed by a profit motive. But that's when I also turn to Rich Vin Konynenburg's writings on chronic fatigue. When you start to find the same info presented from multiple disciplines and reaching the same general conclusions, it feels more and more "right" - which is what I loved abut Nancy's original post and the article. Focusing on the body's fundamental ability to perform at 100% - and supplementing the weak cogs in the system - seem to be making a huge difference for us.

 

:wub:

 

Oh Laura! I was so excited to read this about your parent/teacher conference!!! We have both been chasing this measuring stick for awhile now and I am so happy for your son. I had one of these conferences too, last Monday.....where 2/3 of the teachers were sitting around the table looking like...why are we here meeting for this girl, and the other 1/3 who have been working with her for a few years had tears in their eyes as they discussed how far she's come and caught up.

 

On the methylation, (which I just had to glance upward to spell correctly)......I haven't stopped reading, but I keep waiting for the layman's version, which may have been in a post I missed, idk. I realize that wellness for our kids is a fragile state.....kinda like the old TVs with tin foil on the antenae and you had to stand in just the right spot on the floor to obtain the clear picture......shift your weight slightly and the static would mess it up again? So if the correct supplements can stabilize that clear reception, I'm all for it!!!

 

I also like that you have received some "normal" results for your son, that not every test is indicating an excess or deficiency; that always makes me skeptical too, even if I have no idea what I'm looking at. So, do you think you could lay that out? The components of a basic methylation check-up? Exactly where to start or who to work with if you don't need a LLMD in the picture (and w/o getting taken for a ride)? Limit the heavy jargon? You have a gift for crafting the perfect analogies for the rest of us so.......chop, chop.

[justinekno]

I love this analogy. Sums it up perfectly!

 

kinda like the old TVs with tin foil on the antenae and you had to stand in just the right spot on the floor to obtain the clear picture......shift your weight slightly and the static would mess it up again? So if the correct supplements can stabilize that clear reception, I'm all for it!!!

 

Edited November 30, 2011 by justinekno

[justinekno]

Thanks for posting this. We are starting to go down this path - have lab orders in my purse for testing MTHFR, Methylmalonic Acid, and B12/Folate Panel. I was talking to our LLMD on the phone last week and I pulled out some testing we did through Great Plain Labs in 2009 and some of the results hinted at possible methylation issues so we are going to go the cheaper and insurance covered route of doing the bloodwork before rushing to do another urine test through Great Plains (we just did the KPU and ERMI tests this week so I have no more money left for awhile!).

 

Also, agree with LLM, Yasko's DVD is very informative. My husband and I watched it on our "date night" this past weekend

 

It says it's for "professionals," but it's really not especially difficult to understand. And he talks a little bit about every aspect of the issue.

 

Dr. Kendall Stewart - Methylation

[dut]

Hi - I know wot u mean LLM re almost getting it..I have 'aha' light bulb moments but 'cos the issue is so complex, the light flickers and goes out pretty quick 'cos my understanding is so sketchy and my memory so shot

 

I feel like I will get there but I will need to re-read it over and over. Hopefully, the DVDs will help.

 

As for my ped visit. She feels that B12 is fundamental if you can handle it and from what Yasko says, you can handle it if you clear the upstream blocks. For completeness we are testing serum homocysteine and histamine in both kids and doing the MTHFR DNA for me and dh, although I doubt dh will go.

 

She said yes, add in betaine (TMG) and B2 to lower homocysteine. She feels it isn't necessary to look at other SNPs but said that was in part 'cos she doesn't know what to do with the info. She says that most/all? of her PANDAS kids have this issue upon testing and that she is seeing improvement with supplementing but didn't clarify. Not her fault but the appointments are so hectic with ds there. She would love to borrow the book and DVDs when I'm done with them. I love that she is willing to be honest with what she does and doesn't know and willing to learn more.

 

She mentioned a product by Thorne called Methyl-guard that has the 5MTHF, Pyridoxyl 5 thingy type of B6 and TMG in one pill. She says it's the only place she can find the TMG, if I remember right.

 

Anyways.. if/when the light finally stays on instead of flickering, I'll share my hard won knowleadge before I forget it again!

 

My ds does seem to be doing better. Not sure if it's the ibuprofen, prevacid or the B6, 5MTHF and B12. I'm throwing everything at him I'm afraid in the hopes of getting spat at less. Oh the joys!

 

Thanks for the continued discussion folks

[trggirl]

Kim, did you ever see results from taking the garlic? Did you ever supplement with S-Methyl-L-Cysteine?

 

I'll admit I am intrigued and confused. I have read over and over that Methionine has helped OCD symptoms but if I am understanding the articles, methionine would not necessarily be a good thing for a high Camkinase II child????? Am I understanding this correctly???

[LNN]

:wub:

 

Oh Laura! I was so excited to read this about your parent/teacher conference!!! We have both been chasing this measuring stick for awhile now and I am so happy for your son. I had one of these conferences too, last Monday.....where 2/3 of the teachers were sitting around the table looking like...why are we here meeting for this girl, and the other 1/3 who have been working with her for a few years had tears in their eyes as they discussed how far she's come and caught up.

 

I have to chuckle - kind of a mixed blessing, eh? You finally get to the point that your kid looks normal (yeah!) but then no one believes you when you say it could all go away in a blink or they don't understand why you're so PTSD I have to add the caveat that DS still has catching up to do, still has some skills to sharpen. But he's @ a C+/B- level. My gut tells me he "should" be a B+ student when he's finally "there." But considering that 3 yrs ago, his teacher thought he was borderline ASD and in the bottom 10% of his class, this is definitely progress. Information in his brain has gone from goo...to jello...to maybe cookie dough - not rock solid yet, but way better than the goo days. There is still some hard work ahead of us (lyme, maybe some mercury) and that will set us back when we do it. But he's waking up.

 

As for analogies, you're TV antenna is a pretty good one. I've tried thinking of others, but none work really well. Yasko uses car accidents. I see it as a decathalon. In the Olympics, you have these "perfect" athletes who can compete in not one, but 10 events. In a theoretical perfect person, the methylation cycle would go thru "10" steps (there are about 300 chemical processes, not 10) and at each station, the athlete would perform perfectly and the body would get the goodies it needed to work properly.

 

So the athlete starts at the starting line with methionine and goes to station 1- folate - where it converts folate to methylfolate to make seratonin. We all know why seratonin is good. What's left over is homocysteine. You need things (betaine/tmg is one) to convert homocysteine back into methionine to start the process all over again. If you don't have enough folate in your diet or have a genetic mutation that hinders your ability to convert folate into methyl-folate (a mutation in your MTHFR gene), you don't win the competition and the body doesn't get enough seratonin. If you end up with too much homocysteine at the end of this mini-competition, this somehow leads to high histamine and is also implicated in heart disease, macular degeneration and other diseases that seem to "run in the family". (this is one of the (many) points where DUT and I go "ohhhh" and then the light flickers out...I don't totally understand the histamine piece yet).

 

So if you have a MTHFR (MethyleneTetraHydroFolate Reductase) mutation (called a polymorphism to sound fancy), you can have tons of folate in your diet and still not be able to make enough seratonin because genetically, your body doesn't know how to turn folate into methyl-folate. BUT - Yasko says you can cheat in this race! You can supplement with a pill of methylfolate. So your athlete can then go on to make seratonin and compete in the next stage.

 

Or...maybe your MTHFR gene is fine (like my DS) but have a diet poor in folate (and in any other vitamin, mineral or amino acid that's not contained in peanut butter, jelly or goldfish crackers) and not be able to make enough seratonin. Here too you can supplement (this time with the less expensive regular folate) and catch up to the "perfect" athlete.

 

This goes on and on. This little methionine=>folate=>seratonin=>homocysteine=>B12=>methionine cycle is just one cog. Down stream (again - I understand what I read but am butchering the details/accuracy of all this), similar conversions happen with zinc and B6 for the immune system, betaine/TMG for the detox system to get rid of metals (get a methlyation block at the liver and you can end up with toxins and metals buildup), brain chemicals (glutamate, calcium, epinephrine, dopamine...). It's this whole complex series of long jumps, marathons, hurdles, relay races, sprints, high jumps...that keeps the body working properly. It involves the digestive tract, the liver, gall bladder, brain, thyroid, adrenals, immune system, bone growth... Throw in a genetic mutation or a nutritional deficiency along this pathway and all sorts of things can fall apart, like dominoes.

 

Oh - and chronic infections totally screw things up because they intentionally mess with you and toss grenades at various methylation points to make you more toxic to suit their needs. Some of the docs speculate that bacteria can alter the chemical processes required for methylation. Some think maybe that when the immune system sucks up so much zinc when fighting an infection, less zinc is available in the system to go up to the brain and regulate the neurotoxicity of glutamate/calcium. Or maybe bacteria suck up calcium and aluminum and mercury to use in biofilms and foster deficiencies in the detox pathway so that they have a better supply of metals as building materials. It's all about war and supply lines and which side has the better logistics systems.

 

There are other pathways - transulfuration, Krebs, others, that work in similar ways to keep the foundation of the body working. it impacts mood, energy levels, learning, memory, nerve remylination..it switches DNA on and off. Google methylation and you get all sorts of NIH hits on cancer. So it's all way beyond my ability to explain it. But you listen to these videos by Yasko and she talks about what happens when the brain gets too much glutamate and she's suddenly explaining all the behaviors we all live with in our PANS kids. And it comes down to the body's ability - or inability- to utilize essential vitamins and minerals - either from a genetic inability to do a conversion or a nutritional deficiency. KPU/Pyroluria - which both my kids have - is in a loose sort of way a "methylation" block where the body has lots of zinc in its plasma but due to a genetic mutation, can't utilize enough of it to supply the immune system and to control glutamate. So we mega-supplement and then it gets just enough to get the job done.

 

But Nancy's right - it's a delicate balance. Too much of something isn't always a good thing. You can do educated guesses on your guinea pig kid or you can spend about $600 doing Yaskos' genetic tests and then buying supplements she feels help the body "cheat" and bypass the conversion steps it isn't capable of doing on its own. Not saying either is ideal. But for me, it's that thing that we seem to have been missing.

 

If Pex got rid of auto-antibodies, that helped. If prednisone dampened inflammation, that helped. Abx helps keep the tick infection in a stand-off until we can hopefully re-supply the body's army and clean up the detox channels with the missing metyhlation supplements. Then...we wage a full blown war again and go after metals and cyst forms of bacteria and biofilms. And hopefully the body is in almost-olympic shape and can handle the things it hasn't been able to handle in the past.

 

Ok, so a very poor analogy and a very rough description of how I understand methylation. Remember, I'm an art major/writer who spent chemistry class flirting, not paying attention. I hope my partners in crime chime in to correct my mis-statements.

Edited December 1, 2011 by LLM

[philamom]

Ok LLM - you lost me at PB & Jelly (which by the way is my dd's fav). Just kiddin - thank you for your rough description. I just wish I wasn't so darn tired by the time I get to log on. Instead of enjoying Sponge Bob with my daughter - I'm trying to remember what little I learned about the Kreb Cycle. (lol)

[dut]

LLM - that's a fab description! Best easy grasp one I've seen so far I think you just condensed Yasko's book to one page