Jump to content
ACN Latitudes Forums

Not PANDAS, but histadelia we think


Recommended Posts

  • Replies 88
  • Created
  • Last Reply

Top Posters In This Topic

Hi - I'm awful at explaining and would probably cock it up anyway but this link is a fairly easy and visual explanation.

 

http://www.ceu-usa.com/courses/WC001/test_drive/methylation_cycle.htm

 

I don't get it totally but from what I've read it is important in very many body systems and it would seem to be important in neurotransmitter production (serotonin, dopamine, norepinephrine, melatonin too) and detoxing. it is also a step needed for methionine prodcution and consquently glutathione and is important for scavenging free radicals in oxidative damage.

 

our dd who is compound heterozygote and so has one alelle wrong on two genes, has low metabolites for serotonin, dopa, norepin and is an awful sleeper without melatonin. She also is high histamine not tested but symptom wise would seem variably but always high It will be interesting to see how she does on this regimen...

 

 

I'm trying to get a handle on the immune implications but am wondering if for some the increased histamine production alone (for the under methylators) is the initiating trigger for autoimmune, as is touted in some reasearch (increase H2 -> autoimmunity ...saw a paper where ranitidine aka zantac was used to decrease psoriasis symptoms).

 

 

 

Sorry if this isn't clear but neither is my understanding :)

 

Our PANDAS savvy ped says to especially consider mthfr if you have familial issues with heart/arteries/clots etc due to the increased homocysteine levels...

 

We also have a family history of salicylate sensitivity and assume same in dd as she appears to have problems with yellow food colouring which cross reacts like aspirin according to our immunologist. I suspect she may have more than one impaired pathway methylation and possibly sulphation but I ain't even thought of opening that can yet :-)

 

Okay, folks, not that I care, but I was bringing DH into the loop on this whole methylation line of investigation. I showed him the link here . . . the "simple" explanation? I should've known better . . . he reads "Scientific American" for fun. <_<

 

Anyway, turns out the diagram of the methyl group is inaccurate in this explanation. They're showing a "Mickey Mouse" with one carbon and two hydrogen atoms. Turns out that's actually a molecule of "methylene," not a "methyl group." A "methyl group" has a carbon atom and three hydrogen atoms, not two!

 

Just thought I'd warn you in the event any of you decides to run with this to your scientifically-minded spouse or friend, let alone a doctor. I'm sure the narrative explanation is still valid with respect to the main issues; but if they're like my DH, the inaccuracy with the chemistry right up front might make them turn up their noses and question the credibility right from the get-go!

 

No worries though . . . DH likes the other links and has even been inspired to do some of his own homework/research! I guess this "sciency stuff" is tripping his trigger! :D

Link to post
Share on other sites

Hi Nancy,

 

I'm not sure about the allergy issue, cudl you clarify (I HAVE been reading, I just have a major block here and am not understanding, have not had anyone explain like you and other moms on forum as of yet havw been so kind to do - but to answer your "?", my son has severe peanut allergy and has had several "allergic rxs" like vomiting in KG (just found THAT out this year) (d/t eating someone else's sandwhich that had PB in it b/fore we knew he had allergy); hives, facial swelling when eating something that probably was near peanuts, POSSIBLE allergy to CEPHS ABX; so Dr T and I am wondering; is he high histamien or low? He DOES have allergic rections, and is in danger of anaphylaxis with PN, so would he be high histamien or low? I would think high but I am lost in all teh papers here I may be misinterpretign alot. I guess to this end what is the prob and what do we do? He has hgih plasma histaDINE, but never measured for histaMINE, but I did read one of the papers that histaDINE is a precursor to histaMINE. Hope this helps you undestadn my question, though I understand if not. I am wondering, among other things, if his allergic presentation means he has alot of histamine (therefore allergic reponse and reactions) or oddly low somehow? Maybe histDINE not being converted? And wondering what this means with PANDAS in the picture, and his PDD dx. Separately, what this means for how "safe" he is out "there.."??? God bless and thank you.

 

Oh, he did have a just over the upper limit of B12 in his one plasma sample, but he doee take supplements though not really high supps like some ASD supps have. So artifact or not? His B12 was:1072 HIGH (211-946) pg/mL

 

You are the best.........

 

Okay, I'm trying here, but I'm pretty limited where this stuff is concerned because I haven't dealt with it before.

 

It looks to me, from the little bit of reading that I've done, that both more common allergies (like hay fever) and more disturbing ones (like peanuts) are caused by the allergen inspiring an immune reaction, and antibodies attach to mast cells and, in turn, inspire the mast cells to manufacture histamine. For whatever reason, though, the peanut allergy is usually more severe, so that would, I think, explain the rise in IgE levels (my son's were still in the normal range and he has the pollen/mold/dust/dander allergies but no issues with foods). But in the end, histamine is still the culprit in the allergic reaction.

 

What's not clear to me at this juncture, though, is whether or not, in a kid with a very specific, non-environmental allergy like your DS, whether histamine levels are always high, or if it takes the specific trigger to raise them and otherwise they lie in the normal to even low range? Yes, I understand histidine to be a precursor to histamine, also, but not sure if that is indicative of anything in particular. Histidine is an essential amino acid, so every human has it to some degree. One interesting note that I read about histidine, however, is that when rats were given supplemental histidine, it caused them to excrete up to three times the normal levels of zinc (so, I'm presuming, on some level, they became zinc deficient). Sounds like high histidine, then, might be a precursor or marker for KPU? LLM, help me out here . . . . . Dr. Pfeiffer also suggests that a zinc supplement is beneficial for high histamine/under-methylated persons, so that sort of fits in, as well.

 

Here's what I get, though, from your descriptions and Dr. Pfeiffer's chart, etc. Please understand, though, that I really encourage you to get a doctor to weigh in on your specific questions. It would make sense to me that, with the severe peanut allergy where he seems to react even to something that might have been "near" peanuts, and with the high IgE levels he has, plus he's shown a tendency toward hives, plus he has the higher histidine levels, he would almost certainly be higher in histamine, as opposed to lower, and therefore tend toward under-methylation. Have you taken a look at the link both LLM and I posted to Dr. Pfeiffer's sort of "rubric" of under- and over-methylated characteristics? (Great minds think alike, eh, LLM? :P ) Not that it's a substitute for a specific medical opinion, but do any of the other characteristics (emotional, mental) seem to fit your DS? I know that when I look at the high histamine/over-methylated column, my DS definitely meets most of the criteria.

 

Everything being part of a "cycle" and therefore a "balance," though, I have to say that I'm currently leaning toward a more "holistic" response to this information. My DS has been taking B12 and B6 (actually, a time-release B-complex) for about a year now, and it was only when we added a B12 sublingual during a tough period that we saw definitive signs of a histamine increase (via the increase in eczema, mostly). So while I have been encouraged by this information to try adding SAMe, I'm not planning on removing the B-complex. The methylation cycle looks like just that to me, and I don't want to throw it out of balance. So, I'm thinking that, for the time being anyway, I'll try "feeding" both sides of the cycle and see how he responds? Thoughts?

Link to post
Share on other sites

CAB - two thoughts...first, I totally understand your hope to get support from us in light of your inability to get your doc interested. But we are so far out of our league on this stuff...I really encourage you to take your labs to a naturopath or DO (doctor of osteopath) - this is really their area. I know that when we moms look back at this thread 6 months from now, we'll cringe at our speculations and incomplete understandings. We're really just tossing things out to spur ideas. Some will prove insightful and others will be dead wrong. I think with your legitimate concerns and the serious peanut allergy, I'd get yourself to a trained person who works with this stuff all the time.

 

Also, keep in mind that the labs you have (which are beyond me) are a snapshot in time. Results are going to be influenced by the time of year (allergens), the time of day (fasting/not fasting), diet in the past few days... This stuff shows that you can have a genetic tendency toward certain responses, have a fundamental need for more of one thing and less of another. But people don't walk around on the verge of anaphylactic shock every minute of every day. Histamine et al levels change throughout the day and are influenced by many factors.

 

My DD fits neatly into an undermethylator box. My DS does not. Some people are neither (tho I agree with Nancy - his allergies certainly weigh heavily in undermethylation). Dr Walsh ended up making 26 different types of methylators for this very reason (and I suspect that if our alphabet had 30 letters, he'd have made 30 types).

 

Before you consider tweaking anything, I'd get myself in front of a doctor who will go in this journey with you. Call some people and ask the receptionist if methylation is something they deal with. If she's never heard of methylation, ask if the doctor frequently uses vitamins as part of his/her protocol. I think with all your questions and concerns, and the PN thing, you'd sleep much better having a professional on your team. If your current docs aren't helpful, you need to switch or add a team member.

 

Nancy - so glad DH is curious. You guys are way better equipped than I am. I spent too much of chemistry class flirting with the guy who took me to Jr Prom (and that was a total bust - man do I wish I'd had different priorities. He was the center of the basketball team and I'm 5'2 - what the heck was I thinking?).

 

As for the KPU/zinc link - it has caught my attention. But I'm not sure how it all fits. I did see one diagram that showed things beyond the SAMe part of the cycle and zinc was about 3 points downstream from there. At the zinc juncture was the point where immune system issues and heavy metal detox occurs. So I'm searching for that diagram again. Zinc serves as the bullets for the immune system. I think a clog in the methylation system can result in zinc inefficiencies (whether KPU induced or not) and I think that, along with the effects methylation can have on seratonin, dopamine and the BBB, apply to a lot of infection-triggered disorders (Pandas, lyme, schizophrenia, anorexia and others).

 

Nancy - re: the B-12...my DH took a sub-lingual B-12 for about a week, recommended by his new integrative doctor and he stopped. It made him jittery/fidgety and gave him tingly feelings in his legs. So I guess you need to consider DSs personal response. Thankfully he's old enough to be able to describe how it effects him. It sounds like he might benefit from reducing or removing it, but you're right - it's all a balance. Maybe also look at diet to see how much he may be getting from there. I am now a huge fan of integrative docs. Like all docs, some are better than others, some have specialties, but in general, the holistic approach to a problem has been really helpful for us. Aside from my annual GP physical for insurance purposes, integratives are the ones helping my family get healthier. Highly recommend getting one (HA - sounds like I'm telling you to pick up a cool new widget at Target).

 

If anyone finds a diagram that shows zinc downstream in the methylation cycle, please let me know. Searching for it again is driving me crazy.

Link to post
Share on other sites

LLM - We're definitely going to keep an eye on the B-complex, though, as I mentioned, we really didn't see any negative effects with in until we started adding in those B12 sublinguals on occasion. So far so good with the SAMe, but it's only been two days and I think it takes a bit longer for those effects to be felt.

 

As for us being ahead of you on this stuff . . . well, my DH and DS may have a bit of an edge, but I am right there with you, sister! Until all this PANS stuff hit the fan for us a couple of years ago, I didn't have a scientific bone in my body! I am fortunate, I guess, to have two "science guys" in the to bounce stuff off of. DS and I took about an hour-long walk yesterday (beautiful weather here) in the forest preserve, and he spent the entire walk telling me about biochem: DNA, RNA, metabolism, theory of thermodynamics and how that plays into metabolism, etc. I swear, once he learns something, it sticks! He's got far more science knowledge at his disposal at 14 than I've gotten in more than 40 years! Makes me feel like a dunce! :lol:

 

As for an integrative physician . . . YES! I would love to find one within reasonable proximity to us; Smartyjones mentioned it many months ago, and I've been looking ever since. Trouble seems to be, though, that we are in the medically-conservative heart of the Midwest, and folks who think outside the box are few and far between. The only doctor I could find who practices "integrative" medicine is a DAN! doctor about 1.5 hours away; the distance, in and of itself, is not a stumbling block, but she makes it pretty clear (we went through the initial screening and background paperwork process) that she is not available to treat your child or your family for general medical concerns. I feel like I want that holistic treatment, though, you know? Where we know where to turn whether it's PANS or allergies or a virus or an ear infection, etc. I am open to suggestions and ideas along that front, for sure!

Link to post
Share on other sites

Sorry total newbie here- all the info you have supplied is fascinating. Thank you, thank you, thank you- I happy to know there are others out there just as neurotic as I have become over this disease!

 

While much of it is was over my head the one thing I took away from all of the links-

 

One source is when the amino acid histidine looses a carboxyl group. Some bacteria can faciliate this conversion too. So if you have a bacteria overgrowth, it may be using up histidine and converting it to more histamine.

 

Thus perhaps the strep link...

Link to post
Share on other sites

One place to look for an integrative is to go to your health food store and pick up one of the local magazines. They often carry ads and a physician directory.

 

You can also go the the American Osteopath Association http://www.osteopathic.org/Pages/default.aspx and see if there are local docs. DOs tend to be holistic in their approach yet have the same training and medical privilages as MDs (can write scripts, hospital privileges etc).

Link to post
Share on other sites

Sorry total newbie here- all the info you have supplied is fascinating. Thank you, thank you, thank you- I happy to know there are others out there just as neurotic as I have become over this disease!

 

While much of it is was over my head the one thing I took away from all of the links-

 

One source is when the amino acid histidine looses a carboxyl group. Some bacteria can faciliate this conversion too. So if you have a bacteria overgrowth, it may be using up histidine and converting it to more histamine.

 

Thus perhaps the strep link...

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×
×
  • Create New...