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Not PANDAS, but histadelia we think


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sorry - one more off topic but following on from mthfr potentially inhibiting BH4 and this paper that cites BH4 deficiency and its effect on neurotransmission of dopamine and glutamate, specifically with relevance to schizophrenia but thought the glutamate bit interesting....

 

what I'm not understanding/getting/seeing is how an infection strep/bart/myco/an other could produce such a swift decline and sudden onset of symptoms if, as our ped thinks, mthfr is at the base of it all.

 

Gotta love that acronym MTHFR. It does indeed appear to a right mthfr :) time for bed

 

http://www.jbmb.or.kr/jbmb/pdf.php?data=MTExMDE4MTRAcGRmX3JhaW50cmFjZV9sZWV5c0AlNUI0My05JTVEMTEwMTI3MjAwMl8lMjg1OTMtNTk4JTI5Qk1CMzgzJTI4OSVCRiVGOSVCOCVBRSVCQSVFNCUyOS5wZGY=

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I found this link and it generally ties back to MaggiesMoon's question on methylation and OCD:

http://www.alternativementalhealth.com/articles/walshMP.htm

 

One-carbon (methyl) groups are involved in numerous important biochemical reactions in the body, including genetic expression, neurotransmitter synthesis and metabolism, etc. Methylation (more properly, the methyl/folate ratio) is a major factor in the rate-limiting step (the tetrahydrobiopterin reaction) in the synthesis of serotonin, dopamine, and norepinephrine in the brain. Undermethylated persons tend to be depleted in these 3 neurotransmitters, and the opposite is true for overmethylation.

 

The SAM cycle in which dietary methionine is converted to SAMe (the primary CH3 donor in the body), and then to homocysteine, is a dominant cascade of reactions in methylation and also is very important in production of glutathione, cysteine, and other aspects of sulfur chemistry.

 

Most persons with depression, oppositional defiant disorder, OCD, bipolar disorder, or schizophrenia exhibit a genetic abnormality in methylation..... which appears to be central to their illness. Carl Pfeiffer, MD, PhD of Princeton, NJ was a pioneer in this field. (Oct 3, 2003)

 

The article is long and bounces around a bit but worth a read...(scroll down to the heading for mehtylation)

 

The thing that I'm trying to wrap my head around is that this so closely ties into where I am in my current research. My kids were recently diagnosed with pyroluria, which is a defect in the way their bodies synthesis heme (blood) production. A byproduct of their syntheses creates pyroles that bind to zinc and are then excreted in the urine (along with the zinc, creating a zinc deficiency). Zinc is the ammunition of the immune system. No zinc, no bullets. So it predisposes them to infection and reduces their ability to fight those infections. Pyroluria (aka KPU) is an iummne suppressive condition - most likely genetic/lifelong for my kids but possibly lyme induced (speculated by Dr Klinghardt - a lyme doctor). We saw amazing cognitive improvements in my son when we started supplementing with zinc/B6 but then hit a wall after 2 months when we tried to increase dosage (which is the time Klinghardt predicts the body is finally able to deal with any possible mercury/metals issues). My son tested with slightly elevated mercury levels in a urine test.

 

What I was fascinated by was the earlier diagram that shows how part of the late stage methylation process plays a role in mercury detox. And how B6 (and maybe zinc?) is needed for the methylation process. And how issues in an underperforming methlylation process can cause a clog in the whole immune/detox system.

 

When my son (the sicker of my two kids) was really sick with strep-induced Pandas (and maybe lyme a few months before that), he was a huge ticcer with moderate OCD (maybe in the 20s on a YBOCS but able to go to school and function). Three years into this, with pex helping with the tics and combo abx helping with infection, he's tic and OCD free. The one episode we had of tics/mild OCD this spring was triggered by a too-aggressive abx attack on lyme cysts, which may contain mercury and certainly release a lot of toxins as they die off. So it seems we overwhelmed his methylation system, which was also zinc/B6 deprived. The tics came back. When we stopped that particular abx, the chain reaction settled down after about 3 weeks.

 

So it feels like this thread has just handed me a bunch of puzzle pieces. Lots of things that have been on my radar are turning out to be linked. But now I'm not sure what do do with it all. The cognitive improvements from the zinc/B6 supplement have given us that AHA moment we've looked for for so long. It brought his mental acuity and personality back. But as we proceed, other things seem to be raising their ugly heads - (which might be because we moved the clog in the methylation process to a different point in the pipeline?)

 

Feels like if we can clear the clog, his body may be able to finally deal with the chronic lyme infection in a much stronger manner (the lyme et al is likely hiding out in biofilms after all this time, but that's for another post on the lyme forum). How do you find out where the clog is and how do you clear it?

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LLM -- I know what you mean about the puzzle pieces . . . now if I could just put them all together!

 

I've got to set aside some time to really read this stuff thoroughly before I can comment intelligently, but it seems to me that the whole methylation thing plays into how our kids use, dispose of, react to substances like glutamate and histamine in their brains. And of course, that plays into my current "glutamate obsession" in trying to understand what's happening with my DS and how . . . . :P

 

Must read! Must study! Must think! Ooops, almost forgot. Must work, too, so I can afford to take the time off later to read, study and think! :D

 

Back at you guys later. Thanks for all the great papers!

Edited by MomWithOCDSon
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Here's a thread by some guy who I've seen mentioned lots rich van konyenburg.. anyways he's looking at yasko - he talks with relevance to CFS but it's all looking at meth block glutathione cycle.. some good stuff here but only scanned it for now...

 

http://www.prohealth.com/me-cfs/blog/boardDetail.cfm?id=1092649

Edited by dut
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Back to the original topic re histadelia -

 

some foods are high in histamine and some are histamine promoters. Milk is one that is especially high and I've read that some people are histamine sensitive and that a proportion of those who believe they are lactose intolerant are in fact histamine sensitive. Not sure how this could or even would feed into PANDAS looking symptoms but thought it worth a mention....

 

Dut, What I've seen, milk is OK but most other dairy is not. Have you seen other info on milk? Thanks!

 

Edit - I think I see that it is a histamine promotor not high in histamine itself? Is that right?

 

Susan

Edited by Suzan
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Suzan - yep you're right, rather than being high itself, it is a hsitamine producer.. from the caseimorphs (sp) I beleive. Sorry, my bad :)

 

Looking at histamine problem foods, I was interested to read azo dyes are troublesome. Our dd gets the upper cheek flush alot with yellow dyes. We had assumned it was cross reactivity with aspirin sensitivity as our immuno dr suggested but I'm wondering if it's the histamine issue. She also sometimes has upper cheek flush when eating other foods but we couldn't connect anything. Now I will watch and see if there is a histamine connection when this happens.

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Has anyone tested for a deviation in the MTHFR gene?

 

Ours showed a deviation and DD has been taking 5MTHFR for a few months now. Don't know whether it's the new abx for Bartonella or 5MTHFR but her anxiety/OCD is so manageable now!!

 

Now thinking of trying sublingual B12. We tried the shots years ago but they activated her.

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Hi - yes our dd is a compound heterozygote. She has one on A1298c and one on C1677T I believe. It puts her somewhere around 30% capacity or so.

 

We are doing 5mthf, pyridoxyl B6 something :) and B12. We may also be adding TMG aka betaine.. not sure yet.

 

I've also been giving it to ds and dh and I believe I am seeing the most drastic results in dh .. my dh's mood and overall demeanour has improved so much it is like living in a different house. He has also been taking/trying different blood pressure meds, so it's not totally clear what has been doing it but I'n sticking with the vitamins :)

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Hi - yes our dd is a compound heterozygote. She has one on A1298c and one on C1677T I believe. It puts her somewhere around 30% capacity or so.

 

We are doing 5mthf, pyridoxyl B6 something :) and B12. We may also be adding TMG aka betaine.. not sure yet.

 

I've also been giving it to ds and dh and I believe I am seeing the most drastic results in dh .. my dh's mood and overall demeanour has improved so much it is like living in a different house. He has also been taking/trying different blood pressure meds, so it's not totally clear what has been doing it but I'n sticking with the vitamins :)

 

DUT - Can you explain the type of testing you've done and where it was done (specialty lab, regular lab, etc). Have an appt next Tue with our doc and I want to explore this for my kids.

 

I am such a geek - had to drive to Boston today and in the 4 hours in the car, it's all I could think about. Nancy, I was thinking how this could end up being a key for some (maybe not all) who struggle with seratonin issues - seems way better than an SSRI bandaid. I know I've over-simplified everything in my head and I'm sure it's way more complex than I appreciate. But it just seems like it's closer to the "why" of the problems our kids "suddenly" encounter, and why some struggle even after an infection is gone we've done so much to get them better.

 

I'm waiting to get "approved" to join Amy Yasko's fourm - hoping to get some additional info on all this. Still have to figure out how to fix things, then deal with the chronic stuff, but it "feels right" that this is a path to go down for us.

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Look into LDN (Low Dose Naltrexone). At low dose it helps the underlining issues with autoimmune disorders. You will have to get it from a compounding pharmacy..either through pill or cream. Many insurances cover it but if it doesnt it runs about $40. My son has done MB12 injections, Transfer Factor, LDN, etc. He also has a mutation of MTHR and we suppliment him with methylfolate. Oh..also the LDN helps with the dysbosis the antibiotics have caused. :-)

 

Thanks

Tina

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