LNN

Glad they helped. You'll be amazed as you put the pieces together in the coming weeks. For the MTHFR, I'd suggest starting out with this product http://www.holisticheal.com/methylmate-b-nutritional-supplement.html It allows you to use drops (ea. drop approx 67mcg of methylfolate). We use a medicine cup (the kind that comes with liquid medicine) and put 5ml water into the cup, then add one drop of methylmate. It turns out my DD (+/- MTHFR C677T) only needs 1 drop every other day. That's her sweet spot at her size and with her diet and combo of mutations. I could never give her that low a dose in a pill form. So I'd suggest using the drops to titer up until you find the right dose. If you give drops and moods get better but then get worse, you may have gone too high. The drops allow you better control. Then once you've zeroed in on dose, you can look for a pill in that dosage. (FWIW - my Pandas/Lyme son does not have MTHFR issues. My maybe? Pans DD does. Since 45% of the population is suspected of having an MTHFR mutation, I don't think it's tied to Pandas, tho it certainly contributed to my DDs mood swings!).

Step 1. Take your 23andMe raw data (pull down menu on the left when you're logged in). Download the zipped data file onto your hard drive. Step 2. Then go to the website www.geneticgenie.org and upload your data thru the app (very easy to do). Your data won't be stored on the app server. In a matter of seconds, the genes involved in the methylation cycle will be run thru the app and you'll get a report showing you which mutations of yours are normal (shown in green), heterozygous (shown in yellow) or homozygous (shown in red). Print this report out or do a print screen to save it into a file. Step 3. Go to this website http://www.heartfixe...trigenomics.htm and copy the entire document (50 pgs) into Word. Then in the Word document, delete all the fluff at the back - the recipes, the specific advice to the guy this report was written for, etc. Then delete all the sections that talk about genes that are normal for you. This will leave you with a 10-20 page document that talks about only the genes you have issues with. From there, you can read through it (several times) and get a feel for what sort of supplements and/or diet changes will help you. The 23andMe site is mildly helpful for it's reports on your general health risks. I find it helpful to go to its "browse raw data" section to look up genes as I come across them in my research. But for the methylation piece, genetic genie is what you have to use. It gives you the same report that you'd get by doing Amy Yasko's testing, except 23andMe does not test for the same NOS3 mutations she does and it doesn't test SUOX like she does. Still, once you have your genetic genie report, you can then go to Yasko's site and download her book for free http://www.dramyyask...pdf_02_file.pdf and read the sections that pertain to you. **edit - my original post listed geneticgenie.com - it's actually geneticgenie.ORG. I fixed it and made it a link to the right site.

It might not be the blocking of the folate receptor that's driving the improvement. I admit I only vaguely grasp the explanation, but Wiki lists two mechanisms of methotrexate. The first being that it blocks the enzyme (DHFR) that folate needs to play its role in DNA synthesis. By doing this, methotrexate leads to cell death and effects rapidly dividing cells, like cancer cells, more than other cells. So it's a cancer treatment drug. The second mechanism of methotrexate is the "inhibition of enzymes involved in purine metabolism, leading to accumulation of adenosine, or the inhibition of T cell activation and suppression of intercellular adhesion molecule expression by T cells.[13] In these cases, patients should supplement their diets with folate." https://en.wikipedia.org/wiki/Methotrexate (by supplementing with methylfolate, I assume you avoid the cell death mentioned in the first mechanism) What caught my eye in this paragraph is that methotrexate leads to an accumulation of adenosine. "Adenosine plays an important role in biochemical processes, such as energy transfer—as adenosine triphosphate (ATP) and adenosine diphosphate (ADP)—as well as in signal transduction as cyclic adenosine monophosphate, cAMP. It is also an inhibitory neurotransmitter, believed to play a role in promoting sleep and suppressing arousal." https://en.wikipedia.org/wiki/Adenosine ATP (cell energy) is one of the products of an well functioning methylation cycle. But I didn't realize adenosine was an inhibitory neurotransmitter. Perhaps that's effect you're seeing, rather than a direct effect of folate receptor blocking?

I do appreciate the privacy issues and there are opt-out options when you register your kit. It's a personal decision and I'm not going to try to dismiss your concerns. But one additional step you can take is that once you get your 23andMe results, you can download your data and submit a written request to have 23andMe remove your data from their database. You can of course argue that they'd have backup tapes and information is never really gone. But it becomes a matter of how valuable with this information be to help your child's health long term. When I go to a doctor's office as a new patient, I fill out a form indicating family health history. As medical records become electronic, it will be easier for a health insurance company to flag me for potential heart disease and macular degeneration simply based on my responses. Who's to say that they won't someday start asking people to take genetic tests in the spirit of "preventive" screening - and get your genetic info that way. Genetic testing can give you a statistical probability of developing a disease. But genes need to be switched on or off to lead to disease. Having a mutation does not doom you to having a disease. It means you have a higher probability than someone without that mutation. Are your concerns valid? Yes. But does having information that can improve health today and possibly prevent the development of a disease outweigh the risks of an insurance company gaining access to that information? It's personal decision certainly. But here's a specific example. I found thru 23andMe that I have a CBS mutation. I never, ever would've guessed this from my readings. I tolerate just about every food you're supposed to avoid. Yet it's a factor in heart disease, which is rampant in my family. And it exacerbates issues with your NOS genes, which also contributes to heart disease and inflammatory diseases (which yes, I also have mutations). By treating my CBS mutation and focusing on controlling the amount of ammonia my body has to handle, I may be avoiding the stroke that made my grandmother an invalid. My DD has an MTHFR mutation that increases her risks for "adverse events" from nitrous oxide/laughing gas with dental procedures. I personally think that's really important information as she faces possible extractions pre-braces. By adjusting supplements based on genetic info, my DD is no longer bipolar. My DS is less angry and can focus better. These were changes I made after 23andMe results helped me stop guessing. We were able to stop at least a half dozen supps that were "wrong" for them. I was actually adding to their problems in some cases. Is a childhood freed from neuropsych issues worth some risk of a future big brother issue? For me, absolutely.

Augmentin has a half life of something like 1.5 hrs. So yes, if you're going to be on it, you should definitely be getting twice a day dosing. Some kids do well on augmentin, some do better on azithromycin. Once you get a dx or settle in with a doctor who supports you, you could ask for a trial of zith, which is a once/day dosing. With the inability to get remission that you describe and the number of symptoms you're still seeing after 70 days on abx, I'd definitely push for better abx coverage and also test for mycoplasma - which can respond wit zith but augmentin won't be effective. In addition to a possible chronic infection, here's one other thing to consider, given your sister's history. Sometimes, a body can be struggling with a methylation or nutritional deficiency but it gets by at maybe a 70% level. Not great, but well enough to fly under the radar, particularly if you're a toddler, can't communicate how you feel (except thru behaviors) and your family doesn't know "the real you" well enough to tell what's you and what's not normal behavior for you. Then along comes a serious or chronic illness and that 70% level gets knocked down to 30%. The body needs to send extra resources in to fight infection and the rest of the system comes crashing down like a house of cards, because it barely had enough resources to stay functional to begin with. So a depleted system will send out SOS signals in the form of fatigue, mood swings, behavior changes. So IMO, it isn't just a matter of throwing antibiotics at a chronic infection, although that is clearly a necessary first step. A strong body needs abx to fight an infection. A body that's weak to begin with needs that help even more and for even longer. But, it also needs help addressing the weaknesses that existed before the infection. the infection was the tipping point - the Hurricane Katrina. Now, you have to repair a lot of infrastructure in addition to just fighting the infection. At least, that was true for my kids. Which leads me to say yes, I personally would recommend the 23andMe spit test now. It takes 7-8 weeks to get results and it will give you info that you can't get elsewhere (yes, you can get MTHFR separately, but you need a bigger picture to know what's really contributing to the mood swings and anxiety - and it does give you results on CBS and 990,000 other mutations). For example, both my kids suffer from anxiety when they're sick. Both have a COMT mutation, which is the fight or flight gene. COMT is one of the genes the regulates how quickly your body degrades serotonin and dopamine. So in a stress situation, people with normal COMT are able to handle a surge in neurotransmitters correctly and still make calm, rational decisions. People with COMT mutations get their systems flooded with serotonin and dopamine - like having the carburetor flooded with gas - and they stall/panic/freeze. So if you only look at COMT, you think oh, you need supplement X. But while X is great for my DD, my son also has an MAO mutation and no VDR mutation, so X is bad for him because of these three mutations taken as a whole. Can you start taking L-Methylfolate regardless of your son's MTHFR status? I wouldn't. L-methylfolate is a methyl donor. It's a god-send for my DD with the MTHFR mutation. It would make my son, who does not have an MTHFR issue and already has too many methyl groups (which make him aggressive/angry under stress) and instead needs regular folate so that his body can use up a methyl group as it converts folate into methyl-folate. Without knowing if MTHFR is an issue, you can't assume methylfolate is "good" for everyone. It certainly sounds like your son has PANS and that Peglem can help you navigate the AZ medical community. I know this is a nightmare for you right now. It may take awhile to get things straightened out - some of us have been battling this disease with our kids for years. But it does get better. Lots of two steps forward, one step back. But slowly, we get our kids better.

Doing Yasko would be 90% redundant to 23andMe. When you get your 23andMe results, you can download your data (in a zipped file) to your harddrive. Then you go to www.geneticgenie.com and run your data thru their free app ($10 donation requested - well worth it). You get a report that's identical to the Yasko report - with two exceptions. 23andMe does not test for the specific SUOX and NOS genes that Yasko does. But hardly worth an extra $495(?). As for Lab Corp, you could never afford to test for all that Yasko tests for (a few dozen snps). 23andMe tests 990,000 snps. I find myself refering back to my 23andMe data a few times a month as I come across various issues in my research, even things not associated with Pans or neurotransmitters or methylation. Do the 23andMe first and if you feel it's really essential to kn ow about the few mutations that only Yasko tests, then you could see if you could get those thru Lab Corp

I'm not defending antibiotics, but it's possible that the regression you've seen hasn't been from the antibiotic itself but rather from the toxins released when bacteria die (called a herxheimer response) - or from the die-off of good bacteria in the gut. It's essential to supplement with probiotics whenever using antibiotics. If you didn't, then you may want to leave that open as a possible cause and not rule out all future use of antibiotics. As for your original question, I don't know that the genetic issues we've discussed on this board focus on a "cause" of Pandas as in "this gene (or genes) cause Pandas." There are several genes I've come across as being implicated in OCD but nothing that suggests how to work around those genetic mutations. Mostly. I've personally focused on the genes highlighted by Amy Yasko in her theories of methylation and the impact of mutations on autistic behaviors. Since she only looks at a few dozen genes specifically involved in methylation, we're only looking at a sliver of the pie. But of those few dozen, the ones most directly tied to neurotransmitter balance are COMT, MAO, and VDR Taq. But these are cogs on wheels. They all touch off cascading effects on the other genes around them. So issues with MTHFR, MTR/MTRR, CBS, BHMT...can also impact our kids (as well as kids who don't have Pandas but have other behavioral issues). And I'm sure there are dozens not even on our radar. For my kids, addressing MTHFR, MAO and CBS have yielded the biggest improvements. But it's not the only thing we had to do to get to good health. Ridding the body of chronic infection, managing inflammation, healing the gut and making sure they consumed adequate levels of nutrients like zinc. B6, trace minerals...were also essential steps along the way.

Wishing the whole family a speedy, uncomplicated recovery!

Yes, still do the 23andMe. You won't get the biggest bang for your buck if you treat MTHFR in isolation. You get much better results and long term health benefits by looking at a bigger picture.

There's no way I'd accept a bipolar dx for any child so young. To me, that's an "I don't know what this is, so I'll put this label on it and send you on your way". No way would I give a 4 yr old bi-polar meds. Especially after seeing improvement on abx and probiotics. That points to gut/nutrition/system deficiencies - where mood swings are a symptom, not a cause. My DD8 could have easily gotten a bi-polar label had I gone that route. She is now completely stable by treating her MTHFR mutation (tho she does have a thyroid problem we're trying to figure out) - but no mood swings anymore. You should read this: http://www.easytolovebut.com/?p=2782 "MTHFR plays a direct role in how well the BH4 cycle works – and the BH4 cycle controls those two neurotransmitters that are so essential to people with behavioral and emotional challenges – serotonin and dopamine....Supplementing with methylfolate has made a huge difference for my daughter (and has also helped my own health). Over a few months, my daughter’s anxiety, mood cycling and sadness evaporated..... (read the whole article) I'd encourage you to re-do the MTHFR lab test and then follow up with a 23andMe spit test (which takes 7 weeks to get the results but is only $99 and requires no doctor involvement). There is a lot more to the picture than just MTHFR and treatment needs to consider the whole picture (for example, my DD also has a CBS mutation that needed to be addressed or else the whole system would've remained stuck in overdrive). But for now, I'd absolutely look at MTHFR. IMO, a 4 yr old should not be given a bi-polar dx and I'd look into nutritional remedies, not psychotropic drugs developed for adults. They have no idea what sort of damage these drugs can do to a developing brain over time. Yet it's a no brainer that proper doses of the proper form of Vitamin B9 (methylfolate if you have MTHFR) will do no harm. Do no let a psychiatrist make you doubt your mother's instincts.

Can you help me understand the logic behind once a week supplement? To me, it makes a lot more sense to supplement 5,000 IUs once a day every day. Vitamin D will be processed by the liver and stored in body fat, which will be released as needed. But it always seems better to do a lower/slower approach. From the NIH, which granted is a very conservative source for info: http://ods.od.nih.gov/factsheets/VitaminD-HealthProfessional/ Long-term intakes above the UL increase the risk of adverse health effects [1] (Table 4). Most reports suggest a toxicity threshold for vitamin D of 10,000 to 40,000 IU/day and serum 25(OH)D levels of 500–600 nmol/L (200–240 ng/mL). While symptoms of toxicity are unlikely at daily intakes below 10,000 IU/day, the FNB pointed to emerging science from national survey data, observational studies, and clinical trials suggesting that even lower vitamin D intakes and serum 25(OH)D levels might have adverse health effects over time. The FNB concluded that serum 25(OH)D levels above approximately 125–150 nmol/L (50–60 ng/mL) should be avoided, as even lower serum levels (approximately 75–120 nmol/L or 30–48 ng/mL) are associated with increases in all-cause mortality, greater risk of cancer at some sites like the pancreas, greater risk of cardiovascular events, and more falls and fractures among the elderly. The FNB committee cited research which found that vitamin D intakes of 5,000 IU/day achieved serum 25(OH)D concentrations between 100–150 nmol/L (40–60 ng/mL), but no greater. Applying an uncertainty factor of 20% to this intake value gave a UL of 4,000 IU which the FNB applied to children aged 9 and older, with corresponding lower amounts for younger children. I hate to always sound like I'm contradicting your doctor(s). I have no medical training. I don't know your son's entire background or health profile. But in bteween lice treatments, you may want to do some goggling and reconsider big bang vs. steady drip approach. I doubt your DS has D toxicity, given his extremely low starting point, but bear in mind "The first sign of vitamin D toxicity is an increase in the level of calcium in your blood and urine. MayoClinic.com states that this excess blood calcium can cause the following symptoms: "Nausea, vomiting, poor appetite, constipation, weakness, confusion, heart rhythm abnormalities, and kidney stones." These are severe consequences and you should not risk them by experimenting with megadoses of vitamin D3 supplements." http://www.livestrong.com/article/463745-how-much-vitamin-d3-supplement-can-the-body-absorb-at-one-time/ FWIW, in the winter, I supplement my kids with 1 D3 pill @ 2000 IUs plus 1 D3+ Vitamin K2 pill (1000 IUs of D + 45mcg K) daily. In the summer, I only use the D+K pill daily for DD and none for DS because they're out in the sun so much (DS tans darkly and has no issues with his VDR gene, so needs less supplementing) Their D levels are checked a few times/yr. I know your son is in bad shape and needs more intervention but I still advocate lower/more often. And I would definitely add the magnesium back. Based on QueenMother's advice, I'm switching from a Mag glycinate (b/c glycinate can increase glutamate) to a Mag Citrate.

Ahh - the universe has a perverse sense of humor! It's supposed to stop raining by morning. Tell the renter it's an indoor wading pool!

We did this combo when my DS was first Dx'd with lyme. It didn't do much for him - yet I understand why it should be so effective. The augmentin is an extra-cellular abx and the zith is an intra-cellular, so it gets at 2 of the 3 forms that lyme can take (spirochete and l-form). When we added bactrim+zith+augmentin, we saw great gains. So hopefully it will help but if not, know that there are other combos to consider as a Plan B. If you see a herx, make sure you hydrate, encourage BMs with magnesium or psyillium husk. There are additional things you can consider too - search on "detox" and you'll find several threads. If school is still in session, you may want to wait until it ends. A herx can make it hard for a kid to get thru school.

No, not at all. She is allergic to ragweed, yet tolerated the artimisinin as well as a year+ of milk thistle. Her only febrile seizure was when she was 5 when H1N1 epidemic was going on and I followed a stupid minute-clinic nurse's advice and gave her an antihistamine (because the nurse said it wasn't the flu, that it was allergies) and then a few hours later she spiked a fever and the antihistamine triggered the febrile seizure (antihistamines lower your seizure threshold). She took the artimisinin 2+ yrs later when she was 7. She had her clonus (not true seizure) episode this past Jan when she was 8 when again, too much antihistamine/epinephrine at once. It was an anticholergenic (?) response. So artimisinin wasn't any part of her two episodes.

Vitamin D also helps regulate sleep, so the next time you do a blood draw, check D levels (D3). This doctor feels D deficiency is a major component of many sleep issues I think I recall you supplement with D2 but I'm not sure why. I'd always read you need to use D3 in the neighborhood of 1000-5000 IUs depending on your starting levels and time of year. also do some googling on magnesium and heart palpitations http://www.livestrong.com/article/445452-lack-of-magnesium-and-heart-palpitations-chest-tightness/ My family takes magnesium at bedtime to help with relaxation (as well as to keep bowels moving). I think a few weeks back when QueenMother and I were pretending we were backseat doctors, these came on the radar but I lost track of where you're at with them.

We did two rounds (3 weeks on, 1 week off - did this twice) when DD was fighting EBV and slightly elevated lead. Used LLMDs "recipe" of artimisinin + EDTA from a compounding pharmacy. It didn't help with the EBV, can't really say on the lead, as it wasn't very high. But we weren't using it for the purposes you are. I think colleendonny has also used it (same LLMD) so you might PM her. You know I think highly of my LLMD but not everything he's recommended has worked for us. But then, some of his suggestions have been home runs. So you have to give it a try in order to find the right matches for you. Hope this one's a keeper for you!

You may want to contact Pandas Network for literature. They are a NIMH Outreach Partner and may have literature from the NIMH that would be applicable. I used to spend a lot of energy trying to educate teachers about the disease. Lately, I've had much better success glossing over the details and just focusing on what symptoms to look for and what tools they can use in the classroom. I now tell teachers "You won't see the OCD - he'll hide it or make it look like a fidget. You may or may not see the dysgraphia, you may chalk up small signs of adhd to being a boy. But you'll know he's in a flare when it dawns on you that you've uttered his name 50 times today. As in "D, sit down. D, pay attention. D, worry about yourself. D, stop talking, D, pencils are not swords..." It will suddenly hit you that you don't normally say his name as much as you have this week. You won't see a flare, you'll hear your response to it." So my point is to highlight that changes can be subtle and not out of the bell curve of normal for any group of kids. What will be notable is that you'll see a conglomeration of changes all at once that are abnormally intense/different for my particular child. He will be outside his own bell curve of normal. I would include dysgraphia and the suggestion to use graph paper in math or to add a lightly printed grid onto worksheets allow frequent bathroom trips, regardless of whether you feel they're necessary. They often are. highlight that adhd appears or intensifies in a flare Suggest that if they find themselves scratching their heads over a child who started the year on track but now seems to need meds for adhd, or is suddenly not the same student, consider Pans. I would print out the article on the IOCDF site http://ocfoundation.org/PANDAS/ and the article by Tom Insel http://www.nimh.nih.gov/about/director/2012/from-paresis-to-pandas-and-pans.shtml and http://www.nimh.nih.gov/about/director/2010/microbes-and-mental-illness.shtml This one is old but one of my favorites http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2413218/ What every psychiatrist should know about Pandas - great overview.

You guys know I'm all about methylation so I won't beat that drum here. Highly recommend 23andMe. In the meantime, you can try adding 100mg of CoQ10 for energy. It's pretty expensive in places like Amazon and CVS. My grocery store of all places carries an organic brand called Full Circle that's half the price and works well. So shop around but it helps. My son also does well on phosphatidyleserine (aka PS100) - helps a lot with attention and focus. Finally, while it's not for mycoplasma, L-Lysine helps with viral load, which can sometimes accompany chronic infections. So you may want to google that as well.

I'd order the 23andMe spit tests for all three of you. The first kit is $99 and if you order other kits at the same time, those are 20% off, so you could do all three of you for $260 and get 990,000 snps. You can then run your data thru a free online app called geneticgenie (incredibly easy) and get a full methylation report - including MTHFR but also 2 dozen other gene mutations that can be equally important to methylation and neurotransmitter balance and detox. The down side is that it takes 7 weeks to get results, but worth it IMO. When I first had DD tested for MTHFR and we treated her mutation, she went from bi-polar to pretty stable. But the 23andMe helped us find additional mutations that have huge impact on detox, heart disease, hearing loss, and other things. A traditional PCP may order the MTHFR - its easy enough and most commercial labs test for it. But 23andMe is the most economical and doesn't require a doctor.

You can contact PandasResourceNetwork http://www.pandasresourcenetwork.org/ or PandasNetwork http://pandasnetwork.org/ to see if they can use your help. I know most smaller non-profits can really use help with social media campaigns and organizing campaigns for Crowdwise or Kickstarter.

Hope - a friend of mine sees Padula and has not been happy. Her biggest gripe is that she never knows what she's going to spend when she sees him. It "depends" on how much time he spends with the patient. He doesn't do vision therapy but instead wants her to take her son someplace that does biofeedback - to the tune of $5K! Since October of last year when we both went down this path, we've probably parted with the same amt of money but in different ways. Both of our kids have made great progress with schoolwork. But both of us have reservations about our respective doctors. (my biggest gripe is that my dr doesn't give me progress reports and I felt in the dark a lot of the time). My friend is considering switching to my doctor but I suggested she try the exercises at home for the summer and then decide. I'm meeting her on Saturday to give her a copy of our exercise worksheets and teach her how to do them. It won't be perfect and her son would probably benefit from professional therapy - but at what cost? Like I said in my last post, for $40/week, yes it's worth it. For $100/wk, well....maybe if we weren't all bleeding cash already. I will say one thing in favor of my doctor - after our initial 1 hour ($200) exam, she gave each kid a neuro/vision assessment to measure how their eyes/brains interpreted information. A 2 hour assessment ($475) where they had to say which shape might come next in a pattern, which letters were reversed in a paragraph of text, whether they could do certain eye-hand coordination movements...I was shocked at how many things the kids got wrong. She then wrote a 15 page assessment along with specific recommendations for 504 Plans that the school could implement. The school was quite impressed and never questioned the need for 504 accommodations based on her report. The fees for these exams were covered by medical insurance 60%. This site http://www.childrensvision.com/reading.htm has a great visual aid for helping you understand the issues CI gives our kids and there's a "find a doctor" under the additional resources tab. You can probably find someone much closer to you than Padula and if as long as the economics/insurance work for you, I'd consider vision therapy - least for a few months. I found a few research studies that do support the efficacy of VT plus prism over a 3 month period of sessions. (I think prism glasses alone ranked 2nd in terms of efficacy, pencil pushups didn't help at all).

We've done 22 weeks of vision therapy so far. Will finish up in two weeks. The Dr would like her to continue b/c her progress has been slower than expected but the piggy bank is empty. The Dr checked her lens prescription last week and her vision is somewhat better than it was before we started. The prism lens that corrects for the CI has also been hugely helpful. With her glasses on, she is a much stronger reader and can read for longer periods without fatigue. My DS also has CI but we couldn't afford to do therapy for both kids at the same time and we'd already spent so much money on DS for medical. Plus DD is younger and would likely gain more from the therapy. So DS only has the prism glasses without the benefit of therapy (tho they both did home exercises for a period of time). Even without professional/in office therapy, he too greatly improved in his reading abilities. He was less diligent in wearing his glasses (he has 20/20 vision and found the bifocals distracting when he wasn't at his desk). But since he's been wearing them for reading, there's a huge improvement. Went from reading Diary of a Wimpy Kid as a 5th grader to Lord of the Rings in a matter of a few months. We paid $100 per session (got a discount for paying for 12 sessions at a time), which was broken into 2 charges on the insurance claim form ($60 and $40 but don't have one in front of me to tell you what each charge was for). We had Cigna when we started in '12 and Cigna denied the $40 service and paid 60% on the $60 service, so we got a whopping $36 reimbursement. In '13 we had to switch to UHC and they pay 60% of the $100, so we get $60 back. So is the therapy worth $100/week? No. Was it worth $64/week - maybe. Is it worth $40/week, yes. The glasses are a different story - a resounding yes they are worth it, no matter the cost. We paid $200 for the initial 1 hour exam which assessed whether they had CI and also what their lens prescriptions needed to be. The prescription had to be filled by a local optometrist the doctor recommended. We couldn't use lenscrafters or a Walmart/Costco operation. They aren't equipped to handle prism lenses. The lenses were about $150ish and the frames were on top of that. This fall, when it's time to get new lenses, we'll get DD's new frames at a cheaper place (she's outgrown the old frames), keep DSs frames and then bring the frames to the "special" optometrist to have him order the prism lenses for the frames we provide. I don't rule out doing vision therapy for DS tho braces are around the corner and the car has 180,000 miles on it, so I don't see us having spare change anytime soon. But I do plan to continue the exercises at home and to keep both kids with the prism glasses for probably another year.

I've chosen not to respond to the recent thread about what Pandas is or isn't, can or can't provoke in terms of behaviors. But one thing became very clear from that thread - the intense frustration and pain that every family feels as a result of this illness and the controversy/stigma/lack of progress over the past 2 decades. No matter how much time goes by since joining this community, there has always been unanimous agreement on the need for More... More awareness More research More compassion/courage/acceptance/support from local practitioners More consensus on treatment protocols More insurance coverage More ERP therapists More answers In the past few years, some very brave families have shared their stories with various media outlets, some have worked behind the scenes with researchers or existing non-profits, some have created/joined non-profits specifically for Pandas. It seems we each have things we're good at, things we're able to contribute. Whether it's sending a PM of support to someone who's really struggling, sharing a personal story with the media or organizing a national march on Washington, we all have a responsibility to help our kids and those who come after ours to make the path easier. We can - and should - all play a part, regardless of our financial situations. We all have gifts to share. I just came across this organization that seems to have the right idea about cutting to the chase: http://fastercures.org/ If your frustrations have been stirred up, please consider supporting one of the Pandas non-profits, the IOCDF or ACN (which is also a non-profit) with either a financial donation or some volunteer time or some constructive ideas on how you'd like to see things evolve, or just your continued support for this forum. Pay it forward. We all need to act.

Some of these labs suggest your son might have some methylation problems that are preventing him from getting better. Ammonia levels higher...71....was 58 on last test Copper low, 0.50 IL-4 still high at 6.03....normal 0.0 - 4.1 cystine...low 13.4 These are all measurements you'll come across in any discussion of methylation blocks. Several of us have found that zinc/copper ratios that are off can cause emotional/behavioral issues regardless of infection. I would certainly supplement with copper, as copper is essential to dopamine regulation. The high ammonia is also going to add to behavioral symptoms. Supplements that help with ammonia are small doses of Yucca or butyrate. High ammonia is a common problem for those with a CBS gene mutation (my DD and I have this) and molybdenum also helps. CBS also plays a role in cysteine levels. I know it's not everyone's answer, but understanding what unique roadblocks your son has can help you work around those issues. Sometimes, the body can't get healthy until at least some of these roadblocks are cleared. My DD was on abx (bactrim+zith) and for a time, her Pandas-like behaviors got much better. But not completely and then she plateaued. When we did 23andMe testing ($99 spit test) and found her various roadblocks, and she started taking supplements to address her unique issues, she became the child I once knew. She went from bipolar to a normal, sometimes bratty, sometimes angelic kid. For her, methylation issues were her golden ticket. I replied to another thread of yours about choosing a doctor. Of all the doctors in the northeast who have an understanding of methylation, Dr O has the most experience. Which I why if I were in your shoes, she'd be the one I'd see.

Kathy, My rough understanding is that each spirochete curls up into a ball and creates a harden outer surface that is resistant to most abx and can be difficult for the immune system to detect. I never got the impression that many spirochete cysts joined together into a mass that would be detectable on an MRI. If they were, I don't think there'd be the controversy there is. But you can google Eva Sapi's research on lyme cysts to get a better idea. Dr Sapi is at Univ of New Haven and runs their lyme lab. That said, lyme is also known to form biofilms - colonies of many spirochetes and other bacteria and viruses in a mucus glob that can also become cloaked from the immune system. I don't know if biofilms can be detected on an MRI. Dr Sapi's research might help with this idea as well.