jan251

More time. (FWIW, when I hear "leg pain on augmentin" my mind goes to Lyme and/or the usual Lyme co-infections.)

It would be interesting to hear more about this doc's perspective and reasoning. AFAIK, Mepron is typically used for babesia, a protozoa infection commonly found in conjunction with lyme. It's very, very expensive and, from what I've read, liquid only and yucky-tasting. (We are about to start treatment for babesia - we will be using other meds.)

D Mannose works for my ds for urinary urgency, which has been an issue more at bedtime and overnight than during the day. (Magnesium citrate also helps, for reasons unknown. Overnight wetting has not been a problem while on antibiotics.) Here's my take, for whatever it's worth: at first and until recently, I assumed the mannose worked for the obvious reason, cleaning out e coli or some other bacteria from the bladder by binding to the bacteria. And maybe that's the only mechanism. But, I recently came up with a different theory. I believe the urinary urgency has something to do with the PANS immune reaction - after all, it's a symptom, right? I have read that D-mannose can encourage the production of IL-10. IL-10 can signal certain types of macrophages to reduce certain types of activity (e.g. reduce Th1 infection response). IL-10 may be the signal that calms down an inflammatory response once the infection is under control, and thus it needs to be properly timed. However, if there's still an infection present that is the cause of the macrophages' response in the first place, then IL-10 (and by extension, D-mannose) may exacerbate the infection if it is not properly timed, even though it might temporarily calm down some of the inflammation symptoms. If I recall correctly, most of the D-mannose goes out through the urine in 90 minutes. So, relatively short-acting. As it is so short-acting, I tend to think it's relatively safe to try. If anyone has thoughts on this idea, I'm interested to hear whether you think this is plausible.

There was a news story today about a silly occurrence at a town council meeting. Silliness aside, I got curious about what the mayor was referring to with regard to concern about antibiotic-resistant infectious diseases. As far as I can tell, the topic was banning the non-therapeutic use of antibiotics in livestock in this town in TX. I'm guessing this is the proposed resolution http://webcache.googleusercontent.com/search?q=cache:J1o1JcIhvGkJ:agendas.georgetown.org/AttachmentViewer.aspx%3FAttachmentID%3D15571%26ItemID%3D10264+&cd=2&hl=en&ct=clnk&gl=us I don't know what became of the resolution, nor do I know much about the topic; I just thought it was interesting that it was even proposed. (And possibly, many of us could use a little levity. As an aside, am I the only one here who has accidentally started laughing while watching their child perform their usual compulsions/rituals, possibly because the alternative would be crying?)

My understanding is that options for treating bart include ceftin and bactrim, among others.

Thinking out loud, this points to a possible connection between the rise of PRN-deficient pertussis strains and the arrival of the acellular vaccine during the 1990s (am I just stating the obvious or are these separate issues? I don't understand a lot about vaccines)

http://medicalxpress.com/news/2015-03-mayo-clinic-unravels-mystery-disease.html http://medicalxpress.com/news/2015-03-antibodies-brain-proteins-trigger-psychosis.html I didn't notice any mention of PANS/PANDAS... (makes me want to say, "duh")

As for the picky eater on the GF, yeast-free diet, for us the yeast part is more difficult and ingredient labels can be tricky. (If you also need dairy-free, there is virtually no fake cheese that doesn't have yeast.) I would take a gradual approach to finding products that meet the diet requirements (for example, I heard there are GF, yeast-free pretzels at our local natural food store but I didn't see them today). Look to products that are normally GF and yeast-free (for example, many types of potato and tortilla chips; check labels carefully for yeast, as it can show up in strange places, like soup broth). Cook/bake whenever possible but line up something store-bought for times when cooking is impractical. I've been baking yeast-free biscuits for my yeast-free kiddo as his preferred substitute for bread besides tortillas, but now a different kiddo is going GF and should be yeast-free but the combination is brutal so we may allow yeast for awhile for him; I haven't yet tried to make GF/yeast-free biscuits. School lunch is a hard one. Anyway, I feel your pain. Apparently some natural food stores sometimes have GF tasting sessions so that items can be sampled.

These videos helped my ds finally learn how to swallow pills, especially video #2 http://research4kids.ucalgary.ca/pillswallowing/ This opened up a whole new world for us. He was unable to swallow pills for years; applesauce didn't help him, unfortunately. He had difficulty getting the pill to the back of his mouth and what helped was the "duck shake" shown in the video. A friend had good results with the Oralflo cup, though it didn't help my ds. Sometimes I crushed pills and mixed with a small amount of chocolate syrup and then loaded it into a syringe, followed by a serving of ice cream. Many vitamins now come in chewable, gummy or powder form, so I always search for those first, reading reviews regarding taste, of course.

http://abcnews.go.com/Health/wireStory/white-house-unveils-plan-fight-antibiotic-resistant-germs-29947921 See where the drugs are being prescribed? What does "over-prescribed" mean? What interventions? And yet: Animals have greater access to antibiotics than humans?

Following up to kim's link about the autism/antibiotic article, here is that guy's published article: http://www.microbecolhealthdis.net/index.php/mehd/article/view/26382 (eta, he does mention PANDAS)

It did seem to disappear rather abruptly. As it was expensive anyway, we have switched to capsules - I think I have three different brands right here in my cabinet. I can't tell whether the capsules are equally effective. (We have so many additional pills going in, including curcumin, that I'm not really concerned right now.)

My ds doesn't have ticcing, just OCD, so it's harder to measure the effects of probiotics, but he has big, big issues with SaccB; our new theory is that it killed off something that had been keeping some bad germs in check in the intestines, as I had given it to him just prior to the sudden-onset OCD (he has lyme/bart/strep/myco). Klaire never seemed to do anything positive. I use Culturelle (GG is L. Rhamnosus, if I recall) only when he has a constipation issue. Other ones to try: Align, which is B. Infantis; other bifido versions. Right now he is on VSL#3, which is heavy-duty but seems to be helping keep things straight (keep c.diff away), as he is on three antibiotics plus nystatin.

What a frustrating puzzle all this is. We are in a similar position, with positive results for strep, mycoplasma and lyme (IgM), along with a bartonella diagnosis based on symptoms. At this point, I am under the assumption that both infectious and autoimmune angles may be at work.

random idea: could it be the opposite of, or related to, "air hunger"? I'm not even sure what air hunger is though I've been seeing it on symptom lists for babesia

I came across a random article about alzheimer's, Lyme and curcumin and something stuck out at me as a possible reason that some PANS/PANDAS patients seem to benefit from curcumin (or at least that's what I recall from my initial reading about curcumin and PANDAS, way back when): http://blog.lef.org/2013/12/is-alzheimers-caused-by-infection.html I am guessing that, perhaps, these plaques could be a response to other types of infections besides Lyme, contributing to various types of symptoms of the central nervous system. Just thought this was an interesting idea...

FWIW, dasu, just to emphasize what llm is saying, in conjunction with the methylfolate, we were told to give specifically the hydroxycobalamin form of B12 and not the methylcobalamin form of B12 for compound heterozygous MTHFR. (I had to order it on-line so we haven't started yet.) Apparently the form matters very much.

I have read that Lyme can get worse with steroids. As you probably know, steroids can make anyone cranky. Is the OCD worse? Which immune tests were done - how about IgG subclasses and such?

Thanks for all those details, nickelmama! Very helpful!!

Thank you, nickelmama!!! That's really encouraging as that's actually quite similar to our situation (strep, myco, MTHFR, and now lyme). Haven't started treatment yet for lyme and I am worried about getting the antibiotics right and about long-term gut effects (as there is a history of gut issues). What combo has been working for you? Have you had to rotate through different combos - how long did it take to see improvement once you started the combo? What are you using for inflammation? I'm sorry for being so nosy, but you know how it is... I'm feeling desperate as we wait for our lyme appointment and I want to go in with a good idea of what I'm looking for. My head is spinning from all the reading I've been doing, trying to separate the wheat from the chaff...

Looking for success stories. What treatments helped your child's OCD the most? What didn't help the OCD? Can you describe how long it took to see various levels of improvement in the OCD once you started the "right" treatment(s)? If you had to start all over again, knowing what you know now, how would you proceed? Does anyone combine antibiotics with herbals or is it best to focus on one or the other, and in what order? Thank you for any thoughts or suggestions you can share!

I'm relatively new to this too, but sure, that sounds like it to me. Rather than strep being the culprit, perhaps it might be mycoplasma pneumonia, considering the respiratory infection issues. Was she on an antibiotic with the atypical pneumonia? Two of my kids had atypical pneumonia a few years ago, as in, they were hospitalized and the doctors couldn't quite decide based on the x-ray whether it was viral, bacterial or mycoplasma, or more likely some combination, so they went with combination antibiotics. Looking back, I feel sure mycoplasma was in the mix, for a number of reasons.

Thanks to Rachel for pointing out the connection between the two - I wasn't aware. http://circres.ahajournals.org/content/110/12/1661.full Does anyone's child have both a high CaM Kinase II and a heart issue? (My son has both a genetic hypertrophic cardiomyopathy and an abnormal EKG, a delta wave similar to what is seen in WPW, but both were known well prior to the sudden onset of the OCD). So for me, the interesting part of the document is the following: A more important question: CaMKII can be inhibited?! Is the current theory that CaMKII is within the chain of causation, or merely correlated, with PANDAS? It's been a while since I read about it.

This is a great find, just for the discussion alone! I don't know about their overall hypothesis (and method patents have fallen out of favor since then, or at least that's my understanding), but the discussion of how things work is fantastic. Adding on here in case someone's reading this: apparently glucosamine, and specifically n-acetyl glucosamine, is contraindicated in case of Lyme.

Regarding the Yasko sulphating of the gags discussed upthread, just updating with this little tidbit that I hadn't noticed before, that the old study about IBD in a pediatric population found an increase in sulphated GAGs following supplementing with glcnac: