More Methylation

[SSS]

Well crud, now I want to do Yasko's test and just have her tell me what to do-

$$$$$$.

We did the genetic testing on dd, we have an issue, 2 Dr.s comment, still not sure what I'm supplementing is correct-

Edited November 30, 2011 by S & S

[JAG10]

Am I the only juvenile who sees MTHFR and immediately think of a swear phrase???

 

I was totally following your Olympics analogy Laura! I mean, not genuine understanding, but cursory doctor's office understanding. Thank you so much for the Olympic effort to put that together.

 

Does everybody already know about this free webcast next Friday by Scott Smith on methylfolate yadda, yadda,yadda?

 

http://naanyc.org/events/2011_12_09_ScottSmithWestchester.pdf

 

I'd be totally lost, right?

 

LLM....did you do the Yasko testing or did you guinea pig? I mean, if you walk in a typical docs office and tell them you want to run labs to screen for the different Olympic events.... what kind of reception are you going to get? The "oh, you're one of those" look, the "I have no idea what you are talking about so it must be BS" look, or the "sure, no big deal" reception?

[dut]

JAG10 - no ur not! In fact, I got as far as, very loudly saying "motherf" across a crowded peds office to our PANDAS ped when trying to discuss Yasko on the run I've just got so used to seeing it that way...

[philamom]

JAG 10- so funny. MTHFR - another test? That's how I read it ...kiddin of course.

 

LLM- is the genetic testing the Nutrigenomic test? thx

[JAG10]

JAG 10- so funny. MTHFR - another test? That's how I read it ...kiddin of course.

 

LLM- is the genetic testing the Nutrigenomic test? thx

 

Omg, you could do that all day, right? MTHFR how much does that cost? MTHFR this is what's been screwing up our lives?!?!

 

Geez...we thought the PANDAS~it's not so black and white jokes were bad! It's just too easy.

[JAG10]

Okay all you big brains out there......

 

Does FACTOR V (Leiden) fit into this at all? R506Q

[SSS]

LOL!

 

Okay, I'm too broke for all this jazz, since we had the MTHFR genetic test some years back,

and dd is

A1298C ++ (both genes)

I am just going to buy Yasko's RNA formula A1298C, for $85 bucks, give a little dropperful each day,

and poof! All fixed ;-)

[LNN]

Jill - the genetic tests aren't "Yasko's" per se. They can all be tested by any commercial lab. She's identified a dozen or so she feels are key and when you order thru her, you get her analysis of what it all means and what you should do about it. But the genetic tests can be ordered individually thru Quest etc. We only tested MTHFR fro two reasons - I need to understand how much one costs before doing more than I can afford and also because my family history points to this as a likely place we'd find a block. Haven't gotten an EOB yet - don't know the cost. And yes, it is an incredibly funny acronym. yes, many parents find glee saying "it's that $%#@ MTHFR gene that's been %^$#@ us all these years!". It just seems so perfect, doesn't it?

 

As for how doctors will look at you...it's a "common" lab test - at least in the ASD world and integrative world. But yes, docs not in these worlds will probably give you the "you google too much" look. But if any Pandas doc would go there with you, it would probably be yours.

 

Phila - don't know if Nutragenomics is this test or not. We did ours thru Quest.

 

S - duh...just a few drops per day and she'll be fixed. How silly of you to keep dragging her to crazy LLMDs Of course, there is this little detail of chronic infection still left to deal with...and their love of metals....and....

 

Jill - thanks for the Smith link - I'll go check it out. Off to look up Factor V - will let you know if any light bulbs go off...

[kim]

Nancy and LLM..thank you so much for your responses. This thread has really taken off!

 

Life sure is full of twists. I sort of transitioned over to the PANDAS board to take a break from the Yasko/methyl stuff. I only skimmed this thread this morning, but want to tell JAG to please investigate the FACTOR V (Leiden) stuff. I DO believe there is a connection there and hope you will share what you find (I have a poorly formed theory on it at this time). This page was helpful when I was looking at that several years ago.

 

http://www.med.illinois.edu/hematology/PtHomocysteinemia.htm

 

these are just a couple of random things that I had saved

 

http://rheumatology.oxfordjournals.org/content/45/7/833.full.pdf

Overlapping humoral autoimmunity links rheumatic

fever and the antiphospholipid syndrome

 

http://journals.lww.com/md-journal/pages/articleviewer.aspx?year=1997&issue=05000&article=00006&type=abstract

 

Chorea in the Antiphospholipid Syndrome: Clinical, Radiologic, and Immunologic Characteristics of 50 Patients from Our Clinics and the Recent Literature

 

 

 

trg girl, "I" have used garlic capsules but can't say what they would do for symptoms that most here are dealing with here.

Edited December 1, 2011 by kim

[JAG10]

Kim,

 

I'm so glad you responded. When I searched the forums for Factor V Leiden, you were the primary author! My dd11 is positive for Factor V Leiden R506Q single copy mutation.

 

In February 2010, Dr. T ran a bunch of labs on my dd. One of them was for Factor V Leiden. When it came back positive, he said he didn't order it and that it was a mistake or that some other doc must have ordered it. It was not, but....whatever. He did not elaborate on her positive result. hmmm

 

So, thinking this was a total red herring, I ignored it....until last night. You can see above we are playfully bantering about the MTHFR. I know nothing about that really, so I decide to look it up on the web. The first thing I find, I read and then come across an association with Factor V Leiden; this mutation can occur in tandem with MTHFR. Stopping dead in my tracks, I say...wait a minute, that sounds familiar. I look up my dd's records and sure enough, there it is in her labs.

 

Ironically, I mentioned this "mistake lab" a long time ago in a post where my point was we can't all go chasing every lead we report to each other for example my dd's unrelated gene mutation.......doesn't seem as unrelated this am.

 

I'm going to have to look into this more.

 

Jill

Edited December 1, 2011 by JAG10

[kim]

Jill,

 

 

I probably confused you by posting about Antiphospholipid but I wonder if these polymorphisms relating to heparan have a connection? Just one, of what seems like a possible connection.

 

http://www.ncbi.nlm.nih.gov/pubmed/3290104?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA

 

Heparin-inhibitable basement membrane-binding protein of Streptococcus pyogenes

Edited December 1, 2011 by kim

[nicklemama]

While we are talking about the MTHFR and Factor V Leiden, I'd just mention that when you have multiple pregnancy loss, these are usual tests given. I have been tested for them. I'm negative.

[kim]

Nancy & LLM,

 

I had to laugh reading a couple of your remarks. Nancy, I love the dummies versions too and I have no background that qualifies me to dabble with this stuff either. The only thing I have done is spent an inordinate amt. of time at this and had the willingness to make a complete fool of myself at times.

 

What I'm wondering about is strictly in relationship to methylation and people/children who specifically tested high CaMKII.

 

It appears to me that some people may just have too much of this or it doesn't shut "off" properly. If that's the case, and it can be reversed by MRSA, is the methionine pathway something that you would want to supplement? Is a high CaMKII level evidence that you have enough around to begin with?

 

The research in relationship to heart rhythm and elevated CaMKII and this excerpt below, which is taken from PD research (I'm not looking at anything applying except the oxidative stress principal here) makes me wonder...

 

http://www.jneurosci.org/content/27/47/12808.full#ref-4

 

The molecular mechanism of PD remains elusive (Dawson and Dawson, 2003; Lee and Trojanowski, 2006; Litvan et al., 2007a), but one important factor in the disease pathogenesis is oxidative stress (Jenner, 2003; Litvan et al., 2007b), which can promote oxidation of cell constituents, including amino acids. Among them, cysteine and methionine are particularly susceptible to oxidation. Methionine is oxidized to methionine sulfoxide (met-O) by the addition of an oxygen atom to its reactive sulfur atom and the reduction reaction is catalyzed by the family of methionine sulfoxide reductases (MSRs) (Weissbach et al., 2005). The reversible oxidation and reduction cycle involving MSRs, such as the enzyme MSR A (MSRA), has been postulated to serve as a catalytic antioxidant mechanism against deleterious effects of oxidative stress (Kantorow et al., 2004; Yermolaieva et al., 2004; Weissbach et al., 2005) and to act as a determinant of lifespan

 

As far as I know, it's not known what the significance of the elevated CaMKII level was from those tested with Dr. Cunningham.

The heart research suggests that the good old stress chemicals (fight or flight) can activate it too.

 

 

I like the idea that a whole food could be helpful IF this is part of the picture, whether you are dealing with a true autoantibody crossing the bbb or part of a differnt scenario.

[LNN]

What I'm wondering about is strictly in relationship to methylation and people/children who specifically tested high CaMKII.

 

It appears to me that some people may just have too much of this or it doesn't shut "off" properly. If that's the case, and it can be reversed by MRSA, is the methionine pathway something that you would want to supplement? Is a high CaMKII level evidence that you have enough around to begin with?

 

Ok, I'll take a crack at embarrassing myself. It's been a long time since I studied up an CaMKII, so I went to wiki for a review - and found I actually understood one or two more sentences than a few years ago. That is to say, I understood one or two sentences this time.

 

But I still go too lost to speculate on what goes awry in our kids. Yasko speaks about glutamate and excessive excitotoxicty and I can see how high CaMKII would add insult to injury, literally. She refers to calcium as the bullet in the gun and calcium is too high in many of the kids she treated. CaMKII is dependent on calcium, so perhaps excess calcium leads to excess CaMKII.

 

from wiki "As greater amounts of calcium and calmodulin accumulate, autophosphorylation occurs leading to persistent activation of the CaMKII enzyme for a short period of time. However, the Threonine 286 residue eventually becomes dephosphorylated, leading to inactivation of CaMKII."

 

well, what if your diet doesn't contain enough threonine (cottage cheese, poultry, fish, meat, lentils, and sesame seeds)? Or what if you can address blocks in the methylation pathway to control glutamate and calcium? B6 and Zinc play a role in dis-arming calcium over-activity (according to Yasko anyway).

 

I guess I don't look at methylation problems as too much methionine but more of a whole process. It's like the highway I-80. It starts at methionine(San Francisco) and maybe you're just fine but you could have traffic jams at Reno (where folate leads to seratonin) or Salt Lake (where B12 converts homocysteine back to methionine). Or you could get a flat tire in Omaha (where there isn't enough zinc to support both the immune system and regulate calcium in the brain) or a clogged gas line in Chicago (where transulfuration intersects and helps the liver and kidneys do detox)...somewhere between there and NYC, maybe things go awry with glutamate, calcium, CaMKII...and maybe it's because of the bad gas in Chicago or maybe it's the result of the crack in the engine block you started to develop back in the accident Reno but it's just now starting to show the damage. (Yes, Jill, I've worked on this bad analogy all day).

 

So I know Cunningham has done all this work on CaMKII and anti-neuronals and I honestly don't know how any of it fits or doesn't fit with methylation. I would love to get her take on it. I think Hornig and Newell have both considered methylation in the equation, but what if any importance they give it, I don't know. Hornig has also looked at the impact of metals and autism a fair amount - not in regards to Pandas, but as part of her career. And metals would have brought trans-sulfuration/methylation into the equation somewhere. It's one of those topics I'd love to have them all explain but then...if they had answers, neither of us would still be on forums.

[kim]

LLM,

 

Sheeesh! I'm IMPRESSED. I can't find my way outta a paper bag without a GPS and I know nothing about cars (the biology was the easiest part for me) so watching you go through those 3 processes was something!

 

well, what if your diet doesn't contain enough threonine (cottage cheese, poultry, fish, meat, lentils, and sesame seeds)? Or what if you can address blocks in the methylation pathway to control glutamate and calcium? B6 and Zinc play a role in dis-arming calcium over-activity (according to Yasko anyway).

 

I guess I don't look at methylation problems as too much methionine but more of a whole process

 

Ok, that is an excellent point and exactly what I would have said a year ago, however when looking at what has been published about PANDAS specifically....

 

From Buster's thread

 

http://www.latitudes.org/forums/index.php?showtopic=5144&st=0&p=36300entry36300

 

Discovery of new antibodies (24.3.1)

 

In 2003, Kirvan and Swedo published the landmark Nature paper entitled “Mimicry and autoantibody-mediated neuronal cell signaling in Sydenham chorea” which pulled together all the above papers into a finding that there were three distinct antibodies that cross-reacted with Lysogangliosides in the brain. In addition, they found one of these antibodies caused significant CaM Kinase II activation in sera.During this time, Dale , Church and others were making similar observations regarding anti-basal ganglia-antibodies (ABGA).

 

and

 

 

Clarifying the presentation differences of PANDAS (sudden onset, episodic course)

 

In 2006, Kirvan and Cunningham published their finding that children from the Swedo studies were distinct from Tourettes and traditional OCD/ADHD patients in that the Sydenham Chorea and PANDAS children had elevated CaM Kinase II activation in their sera.In 2007, Kirvan further showed that Tubulin is a target of the anti-neural antibodies in patients with sydenham chorea.