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Not PANDAS, but histadelia we think


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I was curious if those with low histamine kids had the ceruloplasmin test run. Dr. T ordered it as part of my son's initial bloodwork. I think it is checking for Wilson's disease. Anyway, if ceruloplasmin is low, I believe it is a sign of high copper. My son's number was 21 (normal is 16 to 35). But I have read that in a teenager, 20 is the low range number. So my son has very-close-to-low ceruloplasmin. Anyone else seen this? It would be buried among other tests ordered by Dr. T during your initial visit. If you child's ceruloplasmin is lowish, do you think your child is low histamine?

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DUT - posted this on the lyme forum but thought you'd be interested in this article

http://planetthrive.com/2009/06/glutathione-depletion%E2%80%94methylation-cycle-block-hypothesis-the-customized-approach/

 

As discussed in Van Konynenburg’s paper, people who have been ill for an extended period of time (many months to many years) will have accumulated significant infections and significant body burdens of toxins, because both their cell-mediated immune response and their detox system will have been dysfunctional during this time. When the methylation cycle is then restarted, both the immune system and the detox system will begin to function better. When they do, pathogens and infected cells will begin to die off at higher rates, and toxins will be mobilized. The resulting detoxification will be unpleasant, and may even be intolerable. If the patient has not been prepared in certain ways, discussed below, she or he may not be willing to continue this and may drop out of the treatment program.

 

This guy seems to think this is the key to several chronic illnesses...

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CAB - I can't begin to understand all of this and could never suggest what the difference is between DINEs, ATEs etc. Totally beyond me at this point. But some doc has ordered these tests for you and it would seem he/she is at least aware of the possible impact of methylation on your son's health. I would see if you can get in front of the doc and discuss. It seems like your gut is telling you these things are important and I always find in hindsight that gut reactions are a pretty decent guide.

 

I also stumbled upon this blog about methylation and it's impact on anorexia, OCD etc...she ties it together in a way that helped me see the implications...

http://pmddisreal.blogspot.com/2008/09/sam-e-to-methylation-to-copper-overload.html

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CAB - I can't begin to understand all of this and could never suggest what the difference is between DINEs, ATEs etc. Totally beyond me at this point. But some doc has ordered these tests for you and it would seem he/she is at least aware of the possible impact of methylation on your son's health. I would see if you can get in front of the doc and discuss. It seems like your gut is telling you these things are important and I always find in hindsight that gut reactions are a pretty decent guide.

 

I also stumbled upon this blog about methylation and it's impact on anorexia, OCD etc...she ties it together in a way that helped me see the implications...

http://pmddisreal.blogspot.com/2008/09/sam-e-to-methylation-to-copper-overload.html

 

Thanks for that link, LLM! This is all beginning to come together for me, and also explains what, on the surface, seemed to be perhaps contradictory information via Dr. T. and various families' experiences as to "high histamine" or "low histamine" being a common component in PANDAS. My DS is high histamine, under-methylated, and I just purchased our first bottle of SAMe today! Let the methylation begin! :D

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Momwith - if you get this could you tell me 'cos I seem to have short circuited and burnt my brain out :)

 

Really tho' if it does make sense and you can make sense enough of it to put it down in type, I'd be super happy.

 

I can understand the cycle in lay terms and the impact it can have on what seems to be spiralling out systems that rely on meth for precursor stages but I don't get the way my dd can go to bed neurotypical one night and wake up so not the next morning. And why does it seem to cause just physical symptoms for some like heart and vascular stuff, CFS/ME for others and PANDAS for yet another subset? Are there other deficiencies in enzymes at play here (and thus other cycles)that cause the various presentations or am I being too simplistic?

 

thanks for any insight.

 

oh and one last question for folks.. when activation is talked about, what would that look like? An increase in symptoms? My dd may be ever so slighly ramping (prodrome ramping that no one else would see) and ds is getting itchy at night again which hasn't happened for months and I am wondering if it is the meth support regimen or other stuff. Could it be B12 activation for dd or maybe the block getting shifted?

 

 

as always, thanks :)

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Also - was wondering if that is why some folks respond so badly to omega 3s on this forum.

 

people recommend them but they increase tics etc in some.. not 'cos of the fishy component but 'cos of it supporting meth and consequently is bad for overmethylators...

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Nancy - for your SAMe reading pleasure...too long to cut and paste here.

Newsweek Review

It's from 1999- somewhat dated, but a good overview. Just be mindful of any other stuff you're using that works on similar points in the system. Let me know how it works...

 

A few months back, I asked our LLMD about SAMe for DD and he said he once recommended it a great deal and now not as much, but he didn't elaborate. I'll be asking why when we see him next week.

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Nancy - for your SAMe reading pleasure...too long to cut and paste here.

Newsweek Review

It's from 1999- somewhat dated, but a good overview. Just be mindful of any other stuff you're using that works on similar points in the system. Let me know how it works...

 

A few months back, I asked our LLMD about SAMe for DD and he said he once recommended it a great deal and now not as much, but he didn't elaborate. I'll be asking why when we see him next week.

 

Thank you m'am! Great, easy-to-follow article. I'll plan on sharing it with DS when he says, as he inevitably will, "What's this new tablet you're giving me?" Old Hawk-Eye! :P

 

And, yes, I'm going to keep an eye on things, especially since he's still taking a low-dose SSRI. I know that even though this stuff comes over the counter and isn't known to have any major side effects, it still might interact with something else. But wouldn't it be wonderful if we could remove the SSRI altogether, maybe with the help of the SAMe?! I'd be ecstatic!

 

I'll be interested to hear what your LLMD has to say about SAMe, as well. Again, it seems that, maybe as someone else said, like Omega 3's, this is a supplement that will work great for some and be a bad idea for others, and maybe the methylation functioning is the key. Maybe the inconsistency of patient response to the SAMe has been troubling for some practitioners?

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trg girl.. yes I seem to remember seeing that a couple of times or it could have been in relation to lowering histamine. Don't take my word for it though... :) I'll keep my eye out and if/when I find a reference, I'll post it....

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Momwith - if you get this could you tell me 'cos I seem to have short circuited and burnt my brain out :)

 

Really tho' if it does make sense and you can make sense enough of it to put it down in type, I'd be super happy.

 

I can understand the cycle in lay terms and the impact it can have on what seems to be spiralling out systems that rely on meth for precursor stages but I don't get the way my dd can go to bed neurotypical one night and wake up so not the next morning. And why does it seem to cause just physical symptoms for some like heart and vascular stuff, CFS/ME for others and PANDAS for yet another subset? Are there other deficiencies in enzymes at play here (and thus other cycles)that cause the various presentations or am I being too simplistic?

 

thanks for any insight.

 

oh and one last question for folks.. when activation is talked about, what would that look like? An increase in symptoms? My dd may be ever so slighly ramping (prodrome ramping that no one else would see) and ds is getting itchy at night again which hasn't happened for months and I am wondering if it is the meth support regimen or other stuff. Could it be B12 activation for dd or maybe the block getting shifted?

 

 

as always, thanks :)

 

Oh Dut! I am sure to disappoint! :P I don't know that I "get it" necessarily any more than anyone else here does, at least not technically. All I really mean is that the pieces are starting to finally add up in my mind with regard to my DS's experience. I don't know if I can put it all down with any efficiency or clarity.

 

You've probably seen that I've been a little "stuck" on the role of glutamate lately, which led me down the road to putting larger doses of B12 into my DS's regimen. But then the B12 dramatically increased his histamine levels (most palpable sign was an explosion of his eczema at the time, along with stuffier sinuses), so I became interested in the whole brain histamine connection. That research put me in kind of a "chicken or egg" and "Sophie's choice" spot because it seemed like what helped control one "bad" component (excess glutamate) increased another neurotransmitter (histamine) which has its own role to play in anxiety. So, it was all starting to look like some Rube Goldberg machine where one thing triggered another which triggered another. And maybe interrupting that chain in one place was more advantageous than interrupting it in another, etc.

 

And then this whole methylation cycle stuff starts coming out, and I realize it really might be a Rube Goldberg type of brain event, and if that cycle can be, in my son's case, "enhanced" because he's more than likely under-methylating given his high histamine reactions, then, just maybe, the rest of the cycle -- including modulating the glutamate and the histamine -- will take care of itself in that methylation process. Make any sense?

 

I know I'm looking at this very . . . maybe too . . . simplistically, but it really has been sort of a "lightbulb moment" in that way, even though I'm still struggling with the science of it all. :P

 

As for what role it's played in your DD or any other kid who was neurotypical one day, and classic PANDAS the next, I don't know. I can only guess at some "maybe's." Given the wide variation in experiences and responses each of our kids has, I'm thinking it's a pretty intricate web, and the stars truly have to be alligned "just so" for things to manifest the way they do. So, let's say, for instance, that your DD was neurotypical, but she's had the predisposition for an auto-immune disorder, and a microbe kicked it off. But we know from Swedo that, temporally, that "first" noticable episode 1) frequently isn't truly the first, and there have been previous ones that were just not obvious enough for them to be caught, and 2) earlier episodes tend to have longer "lag times" between the introduction of the microbe and the onset of behaviors than do subsequent ones. So, in other words, what appears to be "overnight" might actually be a little longer than that, at least in terms of the internal processes that bring about the dramatic behavioral changes.

 

So, maybe in the 3, 4, 5, or even 10 days between the microbe inspiring the auto-immune reaction and the behaviors commencing, that Rube Goldberg methylation machine in her head is just beginning to get knocked askew a bit. Maybe that has to involve a genetic predisposition, too. So, does the inflammation "cut off" the message pathway that throws the cycle off? Or maybe the open BBB leaves the brain vulnerable to either taking on too much of other substances or "leaking" ones essential to the methylation cycle? There's discussion in several papers about an open BBB being thought to contribute to MS, Alzheimer's, epilepsy, etc. For instance, in the case of Alzheimer's, one hypothesis is that the open BBB permits amyloid beta through which attaches to astrocytes and eventually destroys the astrocytes, and that destruction leaves behind a plaque which is insoluable. So, maybe in PANS, that open blood brain barrier permits toxins or even the antibiotics docs are prescribing for the active infection itself in, and those substances somehow either prevent or supercharge the methylation, which in turn skews the levels of glutamate in the brain which can, in turn, result in a whole array of behavioral symptoms. And it just may be the location of the "interruption" or "immodulation" that, in the end, determines what kinds of behaviors appear, given as methylation is going on everywhere, throughout the body AND the brain!

 

Crazy enough hypothesizing from me for you? Wait . . . let me take my tin foil pyramid hat off so I can take a bow! :wacko:

 

Frankly, the idea that the antibiotics themselves may somehow contribute to or exacerbate an issue is sort of new to me, though I know there've been some other posts to that effect. Here's a link to a paper on the topic; I guess the hypothesis is that the abx in the brain may exacerbate the already present CNS inflammatory response by releasing neurotoxins from the cell walls. Weird!

 

Abx in the Brain

 

Activation? For us, it was immediately noticable and dramatic, and yes, it was like he was "more" of everything he was before the activation began. In our case, more anxious, more restless, more "friable," if you know what I mean (touchy, ready to blow emotionally).

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thanks Momwith... my dd did indeed have some lower prerecognition flares before the mother of all showed up - possibly as early as 18 months or so.

 

Funny you should mention abx and initiating behaviour changes. My brother sent me a link this am about just that. There was also a good study looking at how you could change mice behaviour or character type, I suppose you could say, by innoculating them with the gi flora of other mice... perhaps this is how abx upset the apple cart or maybe, as you say, by affecting cycles such as meth.

 

wish I'd done biochem now :)

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Ok...Nancy, this is for you - you will LOVE the Table of Contents of this book, particularly page 85

http://www.amazon.com/Autism-Pathways-Dr-Amy-Yasko/dp/1424343216/ref=sr_1_1?s=books&ie=UTF8&qid=1319240918&sr=1-1

 

Guess what's going on my Christmas list?

 

DUT - I was thinking somewhat along the lines Nancy was, except in my case, I know there were "things" in babyhood and toddlerhood that weren't Pandas but weren't normal either. Severe colic, eye blinking for 2 days, weird episodic manic behaviors that would disappear as suddenly as they came. So my thinking (for this moment) is that things with DS's methylation cycle have always been "tenuous" or prone to imbalance. So each time his body faced an assault, things got a little more unsteady (e.g. an infection, a vaccine, long term effects of a vitamin deficiency, a long period of poor nutrition (as in low sunlight in New England for 6 mos of the year). The list could be endless. Then along comes a major blow (in our case, a tick bite) and then a few months later, strep. So the teetering system crashes out of balance and the neat spool of string becomes a tangled mess that can take quite awhile to untangle. And if you try to untangle in the wrong way, maybe you create more of a mess.

 

So like Nancy said, what seems like "overnight" could be something brewing for awhile. Then one final straw makes small, under the radar things manifest as an in-your-face visit by Linda Blair.

 

Why I think methylation is so key for my kids is that IF I can help make their methylation cycles more effective, then their innate ability to fight infection will be better. Then, our efforts to fight infection from the outside (abx et al) can be more effective. Maybe the brick wall we run into every few months is because we haven't unclogged the underlying system.

 

Not sure how I feel about auto-immunity. My situation goes beyond strep and auto-immunity. So my colored lenses may be missing things. But I still come back to the start of the whole thing and SAMe and homocysteine and histamine.

 

I really really appreciate you guys having this conversation with me! Can't tell you how much the links and ideas have helped. This is huge for me. Thanks!

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