Sam-e, inositol, etc. & Methylation

[monarchcat]

I've finally jumped on the MTHFR/Methylation train after avoiding it for a long time! I think it might be a key componant for ds(12). He undeniably PANDAS and has been on ABX for 4 1/2 year and we did 3 IVIG treatments several years ago with great success.

 

Recently however we are dealing more with OCD and depression, and it "feels" different than past PANDAS episodes. At the moment he definitely has orthoexia (obsession with healthy eating) and is obsessed with what he eats, how much he eats, getting enough exercise (he's become a runner), etc. He's also overly concerned with using resources like electricity, water, etc. And he HAS to be a straight A/A+ student - anything less is just not acceptable to him.

 

We have sent away his 23andme kit but won't see results for a couple months. In all my reading I am CONVINCED he is an undermethylator. My husband's whole side of the family seem to be undermethylators, but mostly with the "good" effects - overacheiving, smart, highly motivated, etc. My son has all that plus the negative effects of undermethylation. Past labs show relatively elevated homocystein, high serum b12, high serum folate, low seratonin, low vitamin C.

 

A few weeks ago he really seemed to tank - very depressed, very OCD, etc so we decided to try inositol and Sam-E. They seemed to help quite a bit within a few days (started with 750mg inositol and 200mg sam-e). We also added a calcium/magnesium/zinc supplement (he had already been taking magnesium off and on).He did great for a couple weeks, but now seems to have declined again over the last couple days. I've upped the sam-e to 400mg/day in 2 doses, but won't go any higher than that. The inositol is about 1.8g/day at this point, also divided into 2 doses. He's also on minocycline for PANDAS.

 

Gee, after all that I'm not even sure what my question is lol. I guess just looking for any input. Do you think I'm on the right track (can't WAIT to get the 23andme data-they better not shut the lab down)? Is there anything else I should add/take away in regard to the supplements? I really don't like supplementing blindly, and I've never been one to just "try" a lot of different things, so this all makes me nervous. I am quite convinvced of undermethylation issues, though, but not sure of what other mutations we might be dealing with...

[LNN]

Monarchcat,

 

It sounds like you've done your reading on methylation and you've certainly been at this long enough to know your own child. The one thing I've finally wrapped my brain around is the idea that being an under or over methylator isn't a black and white thing. You can be an undermethylator at certain points in the cycle and an overmethylator at other points. It becomes a unique balancine act depending on your genetics. So its great that you'll have 23andMe data to guide you. Takes some of the guess work away.

 

On the inositol, 1.8grams is a pretty low dose. The studies I've seen take adults up to 18 grams/day. My son went as high as 5-6 grams when he was 7. It may have taken the edge off the worst of the anxiety, but didn't really have staying power.

 

I never tried SAMe. It seems to really help some people and not others. I think SAMe is mentioned in this document http://www.heartfixer.com/AMRI-Nutrigenomics.htm (keep this link - it'll be very helpful when you get your 23andMe results). But it's not the supplement I see most often used. Methyl or hydroxyB12 seem to be more widely used. Not totally sure why other than the B12+methylfolate not only goes on to make SAMe but it also works further upstream to reduce homocysteine and convert it to cysteine, which then goes on to become glutathione. So maybe the methylfolate+methylB12 provides two benefits as opposed to just the SAMe. IDK.

 

On the cal/mag/zinc - you may want to consider giving just magnesium citrate without calcium. Calcium is excitatory. I've never understood why cal/mag supps are sold as a combo. They are ying/yang. I give magnesium at bedtime and zinc in the morning. When my son started high dose zinc supplements (for pyroluria) he had an amazing response. But then we increased the dose and he had a bit of a step backward temporarily. Not clear why - zinc supports the immune system, so maybe as his immune system got stronger, he could fight infection (lyme) better and that caused a temporary worsening. But we were told it was a normal response for those who were zinc deficient. That we should increase the starting dose of 10mg up to 20mg only after a month, and then wait a full month before increasing it again. Sometimes I think the body needs time to "rehab" and recover from long struggles and it can only handle increases slowly.

 

You might be interested in Dr James Greenblatt's books - he advocates for testing zinc as a major contributor to eating disorders, anxiety and depression. http://jamesgreenblattmd.com/ He's a professor at Tufts.

 

I know everyone thinks Perfectionism OCD is the "best" kind of OCD to have but OCD sucks no matter what form it takes. For now, maybe you can use his obsessions to your advantage and push foods that are balanced. Because OCD can pervert any message, I'd refrain from focusing on "Kale is a great source of xxx" to the point where that's all he'll eat. Instead, maybe say "the goal is to have 123 of x, 345 of y and 789 of z every week" and see if you can get him to strive for "balance" as a nutrtional goal. Also reinforce how healthy it is to be hydrated. This will help him detox.

 

You're an old-timer, so I don't want to insult you with the obvious. But after 4 yrs of abx, don't overlook yeast. It can trigger OCD and Pans symptoms as well.

 

I think you're definitely on the right track. Hoping your results come back soon!

[monarchcat]

I can tell you are right - it's not a black or white thing. So very, very complex. Funny you mention the calcium as I didn't really like the idea of it but had read that it was important to reduce histamine. But, since I don't really yet know what is exactly wrong in the methylation cycle I may take your advice and stop for now, especially since DS hates the large cal/mag/zinc pills. Prior to this I had been giving him Natural Calm, so maybe we'll continue to do that and add zinc in the morning. I like what the Sam-e and inositol have been doing for him so I think we are on the right track. At some point if we continue on this track I might switch him to methionine rather than sam-e but the sam-e acts quicker and quick was what we needed at the time!

 

I *think* we are alright on the yeast front, but who knows? He takes sacc. b with his abx and usually a 30cfu probiotic combo a few times a week in between abx doses (when we remember!)

 

Another interesting note is that at the PANDAS/PANS conference a couple drs metioned the importance of vitamin D levels being ABOVE 50 (not 30 which is what most labs report as "normal"). I looked back and his D level has been in the 30s both times it was tested (various points over the years). I'm wondering if the lack of sun the last month or so might explain some of the increases in behavior/symptoms as well. So, that's another thing we've started - 2000iu vitamin D a day.

 

Thanks very much for your input - very appreciated!