jan251

Great Lakes Gelatin? Just a hunch... not sure if that's what you mean (I have some of that in my pantry - been meaning to make fruit gummies with it - has a lot of glucosamine and such, if I recall correctly. I've been wanting to try the beef as the pork one has a bit of a scent to me) yes, that's exactly what I was wondering re: meat protein as important per Buhner in cases of mycoP but the meat showing up on my son's IgG foods. So late last night I read a snip of the Buhner book on google books preview - I didn't read enough on the background but he says to definitely eat meat (re: mycoP. Just so that I don't confuse anyone, in the part I read, he was not talking about this lyme/meat allergy thing - for that, there really isn't a choice as it's an anaphylactic allergy). The sugar thing is just fascinating. How does one undo that/reset it. How many autoimmune sugar issues are out there that haven't been identified yet?! (to be clear for others, we are talking about very specific carbohydrate molecules, not "sugar" )

from the cnn article that rowingmom linked above

Thank you - I am not especially worried about lyme per se (WB thru LabCorp was negative though I realize there is some controversy, he has no known history of bites, and zero IgE food allergies). What I found particularly interesting is that the type of galactose has been identified, according to that second article. Reminds me a bit about the glcnac mystery and makes me wonder whether the answer lies in correcting the immune disfunction somehow rather than avoiding meat forever. (Has something like ivig ever been used for correction of alergies? Just thinking out loud... I need to do some more reading about this when I can get back to my computer.

Can someone help me think this through a bit... In this older thread http://latitudes.org/forums/index.php?showtopic=20566 I was reading about the importance of meat protein as long-standing myco uses up a lot of nutrients. I will get the Buhner book mentioned in that thread from the library. Does mycoP "use up" meat protein, i.e. does meat feed mycoP? Could this be related to why meat protein sets off my son's IgG foods? And is the answer to avoid eating meat or eat tons of it? I must be missing something...this probably sounds really dumb. Thoughts?

Be specific - what test are you referring to? Psychs typically refer to "Processing speed" as the section of a test such as the WISC, which is comprised of two subsections, and those two subsections deal with scanning/tracking and motor speed. Those subsections do not test auditory processing speed. On the other hand, auditory reasoning and auditory comprehension can be a problem, but they are not typically referred to as being of "slow speed" (even though that's the upshot). There are tests that can be performed by Speech and Language Pathologists. Still another possible angle is auditory processing disorder of one type or another, with testing by a specific type of audiologist (this is controversial). I have a ds who is low in both processing speed (specifically, the Coding subtest of the WISC) and auditory reasoning and comprehension on a language test (I can't remember if it was the TAPS or the CTOPP, etc.). However, he does *not* have ADHD and does not have a working memory problem. On top of that, he's not permitted to take stimulant meds anyway due to another health condition. However, at the same time, he is extremely bright; input and output are slow (particularly through auditory and written channels), but internal thinking is very fast. So, all that to say that NO, I do not think that slow processing of any kind is a cause of ADHD. Yes, many people with ADHD may have various forms of slow processing, but the "causes" of ADHD are multi-factorial and indeed no one knows the true root cause. FWIW, it seems that many people with ADHD have both slow Processing Speed (the motor kind) and Working Memory issues (another subsection of the WISC) though it is critical to note that these same issues are common among most different types of learning disabilities/differences, not just ADHD. There are some books you might find interesting in light of PANDAS, such as Goldberg's The Myth of Autism (am I remembering that right) and Bugs, Biology and Behavior. If I recall, both discuss ADHD. At a more basic level, you might also check out the Eide's The Mislabeled Child, which is almost surely available at your library. Adding: if reading and spelling are a problem, I would also want to rule out developmental vision issues with a COVD optometrist. Adding, it wouldn't surprise me a bit if there were a PANDAS-style, immune or other biochemical reason for slow processing speed. I've tried to look into it however and not found anything.

Thank you all. I know I need to be patient. I'm just hoping for a sign that this is good, that this is the right path, to get me over the tough moments. (Herx would do that for me.) Thanks for the link, Kim. So, the idea is that the immunomodulation aspects of something like the zith shift the immune system to killing bacteria (I think?) but if there were a virus(es), those might then have the opportunity to pick up steam.

I am speculating on possible reasons that OCD would get worse on zithromax and would love to hear experiences or thoughts. Besides yeast, what would cause the OCD to get worse? If the zithromax was killing mycoP (or anything else, for that matter), might that do it, some sort of herx? Or killing off lesser bugs so that the big bad one, whatever it is, has no competition?

Do you mean responsive to antibiotic or another treatment? (grasping at straws here after steroid burst was unpleasant to say the least)

If you don't mind my asking, did you discover the intolerances (especially the dairy but others as well) by trial and error or by testing? I find myself questioning the results of the controversial IgG foods testing, as unexpected things turned up but not dairy, which I think may be a problem. (But if he doesn't eat dairy, and eliminates the others, there is virtually no regular source of protein left...) I need to make an appointment for discussing this with a certain doc, but I'd love to hear opinions.

My son had some chest pain off and on from the time the OCD showed up last spring until sometime early this fall - it was very weird. I thought at the time that it was anxiety-related but we never really figured out what it was. It's hard to remember when it got better. He was on Enhansa curcumin for few months and I don't know whether that helped - it well might have. He hasn't complained about it much in a long time, yet he still has plenty of OCD (we are still searching for the right antibiotic, long story). It is reassuring that the echo and EKG were normal. My son has a heart condition and so has those tests annually, and I was relieved when his tests were fine (he also had a lot of home monitoring, forgot what it was called). Our cardiologist is the only mainstream doc who cared about the episode of untreated strep. I do think that my son reacts to some probiotics but it's not exactly clear which ones or why. He tends to do better with the bifodo species. (I think he's just very sensitive right now. I don't know what the right answer is except that we need to embark on some dietary restrictions.) I instinctively stay away from Lifeway Kefir but I can't recall what his reaction was - I don't think that s. thermopolis is in there.

On daily zithro making it worse, my guess would be either that yeast is a possible immune trigger or that daily zithro was not strong enough to kill the main problem yet killed off some competitor of the main problem. On your main question, what about Lyme?

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check your message box

Just doing more reading on GlcNAc today and came across this article about Alzheimers and O-linked GlcNAc, Jan 2014 http://pubs.rsc.org/en/content/articlelanding/2014/cs/c4cs00038b#!divAbstract. Forgive me if it's been posted before. I don't have access to the full article though it might be interesting to read if anyone does have such access. Abstract: If anyone can explain this to me, a simpleton, I'd much appreciate it. I'm not sure whether these questions even make sense: (1) if there are antibodies in PANDAS that attack GlcNAc, would there necessarily be a "deficiency" of GlcNAc in the brain (that perhaps contributes to symptoms), and (2) if it were possible to raise levels of GlcNAc in the brain via oral supplementation, would the raised levels stimulate yet more unhelpful antibodies, or would the antibodies that were present become "deactivated" by binding with the new available GlcNAc? or both?

Just wondering if anyone has used this - interested to hear experiences, especially with regard to OCD and any behaviors.

Try this thread and the website's forums generally. There are many factors that might play a role in the on-line schooling situation one might choose (single subject? what grade level/level of ability? etc.)

My ds has plenty of unrelated genetic defects, and considering the rest of his medical and developmental history, a defect that had an end result affecting the nervous system would not be unsurprising. In fact, discovering such a thing (or at least the appearance of such a thing, along the lines of the MS defect mentioned) that could possibly be remedied, might be quite a boon, actually. This is why I'd love to hear experiences of others with glcnac... I think that if I can heal the gut (very long story), maybe, just maybe I can fix the OCD.

I can't edit my new post so I will add here. One of the intriguing ideas for me was this bit about NAG in the GI tract. For my ds, there is a significant GI issue. Eta, I'm full of probably stupid questions, but is glucosamine sulfate the same as glcnac that has been "sulfated"? Ok now I'm coming up on your old posts, Kim. Thanks for those, especially this thread http://latitudes.org/forums/index.php?showtopic=5703&page=2

That is funny that you were thinking of this Yasko article. I don't even remember what google search terms turned it up but there's a lot in there. I think my kiddo has a problem with dairy but I can't prove it yet. So I was interested in that aspect of the article. Mostly I just don't know what to do with this information. It just so happens that I started ds on MSM last week and he has seemed happier, so I wonder about sulphur.... I did see that sentence about the MS genetic defect though I want to re-read it in the article. Thank you so much for posting! I have so much to think through - need to make a list of questions for the immune doc.

Can anyone help me understand? (1) NAG helps MS due to preventing reproduction and activity of abnormal T cells. So, would we call it an immune modulator in the case of MS? (2) with PANDAS, NAG may be at least one thing that the immune system attacks because it thinks the NAG is strep. So, NAG would be a bad supplement because it would stimulate the immune system to respond? Edited to add: I was reading more today and came across an interesting section of a Yasko document (talking about autistic behavior and excitotoxins). It refers to an immune attack on strep as also attacking NAG (as well as n acetyl galactosamine; collectively, the GAGs) in the GI tract. She says the GAGs would need to be replaced and sulfated. I'm not even sure what I think about Yasko, but this particular article connected a few dots in ways that make intuitive sense to me.

In our house, we are wondering about OCD being stimulated/exacerbated by yeast, as the OCD seems to get even worse while taking antibiotics. I don't understand what the mechanism would be, but I read bits here and there indicating that this may be a possibility. (For example, we know for sure that our son reacts negatively to s. boulardii.) Now we are trying nystatin and slowly building up Enhansa.

If anyone has further comment on this, or tried this to good/bad/no effect, please PM me. I find myself reading non-stop on-line, early in our PANDAS journey...

I am new but have the exact same question - has anyone used N acetylglucosamine???