LNN

I'm sure he was taking supplements at the time but not zinc. Yes, our LLMD put him on this. We started with one capsule daily for a month. We saw improvements in the first few days. At the start of the 2nd month, we went up to 2/day. Saw some blips as his body got stronger and was better able to detox/fight infection, etc. but nothing severe. At the third month, we went up to 3/day and this produced some blips we didn't like and didn't seem to go away. So we backed down to 2 again. At the fourth month, we went back up to 3/day and he handled it well and we saw additional cognitive and behavior gains. At the fifth month, we went up to 4/day and saw some more improvement. You're not supposed to take more than 4/day. We stayed at 4/month for about 6 months. Then I backed down to 3/day mostly due to expense and pill load. He does well at 3, tho I bump up to 4 when he's fighting a cold, just to help the immune system. I also have KPU and to save money, I take high dose zinc and P-5-P as separate supps plus one Core/day to get the other minerals. My sweet spot dose is determined by how well I'm dreaming. If I take too much, i get weird dreams. If I take too little, I can't recall my dreams. We also periodically do a "zinc challenege" - we take 10ml of this http://www.amazon.com/Designs-Health-Zinc-Challenge-Beauty/dp/B000FGXMAY/ref=sr_1_1?s=hpc&ie=UTF8&qid=1381067799&sr=1-1&keywords=zinc+challenge According to Dr James Greenblatt, if you can taste zinc, you have enough. If you can't taste it, you're deficient. In most months, if he's been taking 3 core, he doesn't like the taste of this stuff, which tells me he's getting enough. But if he drops down to 2 core for awhile, he thinks the stuff has no taste.

Core is a supplement developed to treat pyrroluria http://retailbiopure.me/Core-240-Capsules.html When DS started it, it was like someone literally turned on a light switch in his brain.

Nancy, I always like the way you think!

I was going to write what Mama2Alex wrote. When my DS had been doing lyme treatment for 8 months, he was better than where he started but no where as well as other kids who'd started around the time we did. Something was holding him back. He tested positive for KPU (aka pyrroluria) and three days after we started treating, my DH looked at me and said "what you'd do to our kid?!" (in a good way). It took 5 months to get up to the dose of Core that he needed (you need to go slow, as you will see herxing as the immune system grows stronger). But from then on, he was better able to fight the lyme and we saw more sustainable progress. He then got stuck again at 90% and Yasko/methylation/23andMe got us to 100%. If your DD is stuck, there's a reason. Perhaps stronger/different abx or perhaps other things in addition to the lyme need to be addressed. But hang in there. You'll find it!

KC - you're right - there is no lab test that can prove or disprove Pandas, Pans, lyme or any of it. For most of us, the "proof" comes when we see improvement with abx and declines when they're taken away. But having labs certainly helps. To get a feel for the role of strep in your child's symptoms, I'd ask for ASO and AntiDNase B titers. These are usually covered by insurance. Some kids don't make high titers, sometimes you miss the window where titers will be high, some labs only report positive or negative, not a numeric value, making it much less useful. But your best bet is to do these tests twice - once now and once 3 weeks from now. It's not the numeric value that's as important as the direction of that value - did it go up or down? So discuss this with your doctor and see if s/he is willing to order the labs twice, 3 weeks apart. You can also do the Cunningham/Moleculera tests. Pandas specialists put value in this test. Pandas naysayers won't. But it's $900 out of pocket and I don't know if anyone's insurance has covered it. So don't feel you "have" to do this test. That money may be better invested in seeing a specialist or an LLMD. For what it's worth, my DS had this test done when it was still a research study and the cost was "only" $400. His CamKII result was 179 and he was "highly likely" Pandas, which he does indeed have, plus undiagnosed lyme at the time. My daughter was tested and her CamKII was 183, also "highly likely" Pandas. Yet she was never as severely sick as my son. We did treat her for lyme for 8 months after indeterminate lyme labs and then with methylation supplements and she's now rock solid. Gets sick like a normal kid, tho usually only colds, not bacterial infections. I really don't consider her to have Pandas. You can do the Moleculera test and it will help you if you see a Pandas specialist, but if money is at all a consideration, I'd hold off and let a Pandas specialist make a clinical diagnosis. JMO. If lyme seems like a reasonable possibility, you can ask for a western blot from quest as a first pass. Understanding that there are reasons a negative on this test may not mean anything, there are some people who do get positive bands on this test (which is covered by insurance) and then you're spared the expense of Igenex. Your local dr. will probably order this for you but probably won't see the need to order Igenex. You'd probably need to see a Pandas specialist or an LLMD (lyme literate MD) to order this. You pay for the test out of pocket but then Igenex sends you the paperwork to submit your own claim. We were reimbursed 60%. Whether you ask for ASO/AntiDNaseB and a western blot at the same time depends on how flexible your doctor is. Pick your battles. if you can only ask for one, go with the strep tests as a first step. C3a and C4a are labs you can do as another way of looking for lyme if a WBlot leaves you wondering. These are markers in the immune compliment system that show activation of certain immune system pathways that are usually called to action in lyme disease and mold illnesses. They can tell you the body is fighting something, it just cant tell you exactly what that something is. They're markers for inflammation. If you go down the lyme path, you may find yourself doing these, but at your point in the journey, without a doctor who'll know what to do with the results, I think it's premature and you'll be considered nuts for asking for the others already. I'd hold off. For mycoplasma - again depends on your relationship with your dr. It's a standard lab test, covered by insurance. But if your DD doesn't have a cough, doesn't look like she has walking pneumonia, s/he probably won't order it for you right off the bat. It's worth doing, but maybe ask for it if the other tests aren't revealing. Or if you end up seeing a specialist. So my own personal priorities would be 1. ASO/AntiDNase 2. Western Blot 3. Mycoplasma 4. C3a/C4a 5. Moleculera (due to the expense) But I'm sure others would have a different order.

Please understand, I am not trying to be argumentative, I am truly wondering, where is there "proof" that the CDC did this? Why would the CDC do this & allow a test that they know is not complete? Please- no governmental conspiracy theories on this: just wanting proof or evidence. PowPow- The explanation of these events is in the book Cure Unknown by Pam Weintraub. The CDC uses certain bands for surveillance purposes only - a way to track increases or decreases in the spread of a disease. They themselves say their bands aren't meant to be the end of discussion for making a diagnosis. After the lyme vaccine was available for 2 yrs in 2000-02, the CDC felt it would be unwise, from a surveillance viewpoint, to include bands 31 and 34 because they might end up counting people in their numbers who'd been vaccinated, not infected. That mainstream labs continue to CYA by using the CDC surveillance bands is criminal - but the fault lays with the labs. Of course, it would go a long way if the CDC grew a spine and "recommended" that the bands be considered for diagnostic purposes. But the politics and back story are all in Cure Unknown - a must read IMO, even for "just Pandas" families, because the politics and similarities between the two diseases from a public policy, public understanding perspective is scary.

Cool way of delivering fecal bacteria to people suffering from C-diff. I love how this is being embraced in recent years! http://news.yahoo.com/pills-made-poop-cure-serious-gut-infections-150405405.html

CoQ10/Ubiquinol has helped with energy. Using liquid moly from Yasko. Limiting protein and dairy (which is a huge battle). They say you can also use carnitine for CBS but it's not good for people with seizure history and DD has had 2 seizures in her life, so I didn't go there. Phosphatidylserine can help BHMT mutations to work around CBS but I haven't tried it with DD yet (works great for DS, but it's expensive and I've been dragging my feet. But with school back in session, it's probably time to add this one in for DD).

On the moly, there's a discussion on the MTHFR Support page about moly supplements that don't contain ammonia that you might want to check out https://www.facebook.com/mthfrsupport/posts/545209258830649 We've stuck with Yasko's liquid moly even tho it's chelated with ammonia simply because I don't want to use moly in the high doses discussed in this FB thread that don't have ammonia. It feels like trading one problem for another and since it's my child, who can't describe any changes she's feeling, I need to keep the moly dose low. But since you're an adult, it might be something you want to consider, pros and cons. On the homocystex - I don't know anything about this particular supplement. But my own personal bias is to give each supplement separately and I generally don't use combos. I find that especially with kids, they need smaller amounts of things and often need to avoid one or more ingredients found in combos. For instance, B6, even in P-5-P form, needs to be closely watched in CBS+ people. Not everyone does well on hydroxyB12...etc. So as I figure this out on kids who have this habit of growing, thus providing a moving target in terms of dosing, I generally avoid combo supplements. But you're an informed adult, so this may not apply to you. On MAO - I'm not sure of all antidepressants are MAO-I's You need to check your specific scripts to see. But with MAO-A, you're ability to degrade serotonin and dopamine is already inhibited. An MAO-I will reinforce this natural inhibition. So you may need a lower dose or something that works on genes other than MAO. But I wouldn't assume all antidepressants are MAO-Is. You'd need to check. If they're helping, you certainly want to be cautious making any changes. Copper and zinc can be checked with a blood test. But be aware that it can only test extra-cellular levels. it won't show you what's inside the cell. My son and I have a condition called pyrroluria, where our bodies create a lot of pyrroles as a waste product of heme (blood) synthesis. Pyrroles like to stick to zinc and B6 and when you pee away the pyrroles, you also pee away your body's zinc and B6 supplies. This can't be detected from a blood test. It's a urine test that measures whether the pyrrole levels in your pee are normal or above normal. if above normal, good chance you have a zinc and B6 deficiency, regardless of what a blood test says. Another way to test for a zinc deficiency is to buy some liquid zinc http://www.amazon.com/Designs-Health-Zinc-Challenge-Beauty/dp/B000FGXMAY/ref=sr_1_1?s=hpc&ie=UTF8&qid=1380818552&sr=1-1&keywords=liquid+zinc Drink 10ml and if it has a metallic taste, you don't have a zinc deficiency. If it has no taste, you have a significant deficiency. At least, so says Dr James Greenblatt at Tufts http://jamesgreenblattmd.com/jgreenblatt-bio.htm We both take Core, which contains moly, manganese, zinc and B6. http://retailbiopure.me/Core-240-Capsules.html I find that if I skip too many doses (it's pricey), I stop recalling my dreams. When I'm getting enough zinc, I have great dreams and feel better rested. Here's more info on pyrroluria: http://naturalinsight.hubpages.com/hub/Pyroluria-A-Hidden-Disorder and http://www.biobalance.org.au/_downloads/acnemjournalnov10.pdf (starts on Pg3) Zinc and copper are ying/yang. They should be taken apart from one another, not at the same time. I take my zinc at bedtime (it has a calming effect) and my copper in the afternoon with food (empty stomach+copper can cause nausea for me). Because I have pyrroluria, I need high doses of zinc. But I also need to supplement copper (just 2mg/day), since the high doses of zinc can chelate my body's copper in a greater amount than I can replenish from diet alone. Yes, it's very confusing. I think hair tests can also measure copper levels, but hair testing is a retro thing - doesn't tell you what's happening today - just what was happening when your hair was growing a few months/years ago. Others may have more input. My son battled lyme for a few years and we did use charcoal to help with detox and the whole family takes magnesium at bedtime. (we don't use mutlivitamins - can't find any that have the right blends we need). But I've never used the sulfur strips and don't use it specifically for CBS. We do keep an eye on protein consumption but not fanatically. I have growing kids who need protein and a husband who will never divorce his meat sources. Our solutions have to be workable for a house of picky eaters and stubborn spouses (we have two of those in my house). But we do restrict other sulfurs and also eliminated all supplements that are high in sulfurs (NAC, milk thistle, ALA).

Yeah, I don't just preach to you guys. I preach to anyone who'll listen. I have some other blogs on the site - there are also some really funny ones and moving ones about OCD by my friend Barbara Claypole White that are worth reading.

:wub: :wub: :wub: (btw - Yucca is estrogenic, meaning it increases estrogen. So be aware and maybe discuss w/your doctor as you all suffer thru the "joys" of puberty).

Welcome to the forum! For my kids, treating methylation issues has brought great results, so I think it's great that you're pursuing this. But I will say that if you have an adult variant of Pandas/Pans, then you'll also need to treat the underlying infection before seeing complete relief. If you haven't already, you may want to read Swedo's paper from 2012 http://intramural.nimh.nih.gov/pdn/PANDAS-to-PANS2012.pdf where she lists other infections beyond strep that you may want to test yourself for. Mycoplasma infections and lyme have been big culprits in this community. As for your mutations, from what I've read, I haven't come across a specific issue between CBS and MTHFR. CBS generally upregulates the entire transsulfuration pathway and therefore effects all of the methylation processes upstream and downstream, not just MTHFR. And to treat MTHFR, you need methylfolate, NOT folate. Here's a good list of what aliases a "good" methylfolate will go by and which types of folate to avoid: http://mthfr.net/l-methylfolate-methylfolate-5-mthf/2012/04/05/. You also need to supplement with either methylB12, hydroxyB12 or adenoB12, which works as a cofactor with methylfolate. In your case, I'd guess that methylB12 would be your best bet, since you don't have COMT issues that might cause you to be an overmethylator. But MAO-A can also effect this and if you found yourself a little anxious or agitated on methylB12, you could give hydroxyB12 a try instead. My daughter has both MTHFR C677T +/- and CBS +/-. She found tremendous relief from anxiety and mood issues my treating her MTHFR with a very low dose of methylfolate (67mcg) every other day and 1000mcg of methylB12 every day. My husband has the same mutations and he takes 800mcg of methylfolate and 1000mcg of methylB12 sublingual daily. Yasko says you're supposed to address CBS first, and for that, my family uses 75mcg molybdnenum,100mg C0Q10 in the form of ubiquinol (there are 2 types of CoQ10 - ubiquinol is better absorbed of the two - and more expensive) and they've reduced protein and dairy consumption. Yasko suggests Yucca but that's estrogenic and I didn't want to compound any problem by adding estrogen into the picture. I'd personally suggest focusing on CBS for a few weeks and then introducing a very low dose of methylfolate+methylB12 and building up to a point where you feel calmer. Maybe start with 400mcg methylfolate+1000mcg methylB12 and do that for 2 weeks. Then go up to 800mcg methylfolate and see how you feel for two weeks. Then either stay there if you feel good or increase it again. Some people stay at 400-800mcg and some end up at 5-10mg. But if you go too high, you'll start to feel the anxiety and mood issues return. That means you've crossed the line and you'll need to decrease to find your sweet spot. You may find that addressing these two things will do the trick for you. If not, I'd make MAO-A your next target. MAO-A + means your body doesn't degrade dopamine or serotonin as quickly as it should. It's like flooding the carburetor. It takes you longer to calm down from a fight/flight situation. So you definitely want to avoid MAO-A inhibitors like anti-depressants and cough/cold medicines. Copper helps upregulate MAO-A, so test your copper levels and pay attention to your zinc/copper balance. When my son's copper levels got low (he has MAO-A +), supplementing with 2mg copper helped his OCD. You're fortunate in that you don't have COMT mutations. Most of us here have found this in our kids, adding to their anxiety issues. You can review this document if you haven't seen it already http://www.heartfixer.com/AMRI-Nutrigenomics.htm and that will help with some ideas on your other mutations. But the MTHFR issue was key for my DD and you may find that finding the right dose of methylfolate + methylB12 helps you as well (in addition to testing for Pans infections/triggers).

23andMe tests for 990,000 "snps" (pronounced "snips") which are mutations of genes. One gene can have many known snps. MTHFR has something like 10 known snps and 2 that are well studied. Every gene turns switches on or off. If you have a mutation, the light switch might get dimmed instead of turned off or the switch might always be stuck on at 150 watts instead of 75 watts. (unlike a deletion, which means no light switch at all and causes more serious illnesses). So 23andMe tests your spit for all these snps for thousands of genes, implicated in thousands of medical conditions, physical traits, etc. Using the company's website reports are mildly interesting and sometimes informative. You can chose to unlock reports about your risks for alzheimers and breast cancer but you can leave them locked if you chose. My problem with these reports is they don't tell you what to do about your mutations. Ok, I have a 40% greater chance of developing heart disease. But what do I do to sway the odds more in my favor? 23andMe only tells you the problem, not possible "solutions" But you can take your raw data from 23andMe and run it thru a free app called geneticgenie.org ($10 donation well worth it). This searches your data, strips out the 30+ snps involved in the methylation cycle (the body's way of turning vitamins/minerals into cell energy and neurotransmitters et al) and gives you a color coded report. Each of your parents gave you one copy of each snp. If you have two normal snps, your report will show this snp in green. If you have one "good" copy and one mutation, it shows in yellow. If you have two mutations, it shows in red. You then take this info and pour over the documents I pinned in the "helpful threads" link at the top of the forum. Once you know your mutations, you can take supplements, or avoid certain supplements/foods, to help the boy take detours around your yellow and red mutations in the methylation cycle. So if you have an MTHFR mutation and can't turn folate (vitamin B9) into methylfolate on your own, you can detour around this step by supplementing directly with methylfolate and avoiding the B9 found in fortified cereals and multi-vitamins. (MTHFR plays a role in serotonin synthesis as well as heart disease and cell energy) if you have different mutations in the methylation cycle, you can take or avoid other supplements to detour around those roadblocks. How does this help with pandas? Well, some of the snps in the genetic genie report play a direct role in neurotransmitter synthesis. If you have a Pandas kid who also has a mutation that prevents them from producing enough serotonin even on a healthy, good day, then helping them work around this road block will certainly help them reduce anxiety on both good days and during pandas flares. If they have a problem breaking down dopamine, the last thing you'd want to do is give mega-doses of Vitamin D3, which is a precursor to dopamine, even tho D3 is important to the immune system. So knowing your child's methylation snps helps you customize supplements so that their bodies have an easier time achieving balance in the neurotransmitters. Then, if/when they do have pandas issues, hopefully things aren't as severe. Where I think it's really helped is for those of us who've gotten the worst behind us but can't seem to get that last 10-20% of recovery. Treating methylation roadblocks seems to have helped some of our kids reach that full potential. It isn't a "cure" for Pandas. It won't prevent future flares. But it's like exercise. It won't prevent you from catching a cold, but if you're in good shape, it'll probably not hit you so hard and you'll probably recover much sooner than if you're a couch potato with poor nutrition. And, it seems to help our kids with mood issues not associated with infection. So 23andMe is only the first step in collecting data. You then need to do other stuff to make that data useful.

It could be Pandas/Pans. It's possible you could see an improvement in tics in 10 days. But tics tend to take time to resolve, so I'd look for an improvement, not a complete abatement. If it were me, I'd do the 10 day trial. But be sure to also give a good quality probiotic for the next 2-3 weeks as well, 2-3 hours before or after you've given the antibiotic. I usually gave antibiotics with breakfast and dinner and then probiotics at bedtime. (antibiotics will kill probiotics if given too closely together). Look for a probiotic that's refrigerated (your local health food store will have this) and one that contains a higher percentage of bifido strains. Something like Culturelle will do if you can't find anything else, but personal opinion is that probiotics with bifido strains do a better job of populating the gut with strains of bacteria that are better for nutrition. My son was a ticcer. He'd get better with a 10 day course of antibiotics (abbreviated on this forum as abx) but then would relapse as soon as the abx stopped. After 10 months, he had a tonsilectomy/adenoidectomy (T&A) and it was only then that his tics and Pandas symptoms (OCD, hyperactivity, movements, urinary urgency, anxiety) resolved. Tics were the last to go and took about 2 months after the T&A to completely disappear. Kids can have strep that colonizes in the nooks and crannies of the tonsils where a throat swab won't reach. Sometimes, this prevents antibiotics from fully eradicating the infection and it's only after a T&A that things get better. So just because your DD (darling daughter) is testing negative, that doesn't mean she doesn't have strep. You can also do a blood test to look for antibodies to strep and that can show you whether her body was fighting a recent infection. The blood test ASO (anti-streptolysin) usually shows a rise in antibody titers 1-3 weeks post-infection and an Anti-DNase B blood test will show those titers rising 4-6 weeks post-infection. But they too are not fail safe. Just possible clues. There is no "harm" in the 10 day abx trial aside from the risk of a yeast infection in the gut or other body areas. Probiotics can offer some protection but not entirely. But do make sure you finish the 10 day and don't stop prematurely. Germ resistance comes more from stopping abx too early rather than from using for 10 days or longer. Agree with Rowingmom - magnesium citrate is better absorbed. Giving at bedtime can help with relaxation. If you want to use B6, use the P-5-P form of it, which carries less risk of adverse effects. P-5-P can help with detox - the body's attempt to get rid of toxins and dead cells. My son tics when he fights an infection faster than his body can cleanse itself of the carnage. But don't introduce abx, magnesium and P-5-P at the same time or you won't know what's helping and what's causing any adverse effect. Try the abx for 10 days. Then introduce magnesium for a week. Then add p-5-p. Space them apart and start with low doses.

Well, it was obvious two yrs ago when I tried NAC for DD that it was wrong for her. But it was the 23andMe test this yr. that confirmed why. Once I knew we both have a CBS gene mutation, I knew from my research that we should avoid NAC, alpha lipoic acid and other things. There's no single supplement for "methylation". What you need to take as a supplement or avoid in your diet depends on your unique genetic roadblocks/mutations. So if you have MTHFR issues, you'd look into methylfolate and methylB12 or hydroxyB12 supplements. If you have CBS issues, you'd look into using molybdenum to reduce ammonia levels and avoid high protein meals. If you have VDR Taq issues, you may do well supplementing higher doses of Vitamin D3 than someone who has a normal VDR gene. And as Pr40 mentions, having a mutation doesn't mean that gene has been turned on/off. It means it could be turned on or off (depending on the mutation) at some point in your life. So 23andMe tells you what your risks are. But you need to look at symptoms and response to supplements to decide if that risk is currently present/active or not. It's very individual, which frustrates a lot of people because there's a lot of trial and error to find your own unique solutions. And since this is a very new field, with inevitable "mistakes" - the common thinking saying "do this" and then people come back saying "that didn't work" and the common thinking gets revised as feedback and additional research tells us more. Few doctors are knowledgeable enough to give you precise instructions. Not everyone is up to the task of being their own doctor and unfortunately, that's what you need to do at this point in the evolution of this field. Is it for life? For my family, i think so. I view it the same way I would if someone in my family had diabetes. Now, if they're overweight and eat a lot of "bad" foods and need insulin, they can make lifestyle changes and reduce the number of interventions they need to make. My sister lost a lot of weight and changed diet and went from active diabetes management to a "pre-diabetic" situation where she no longer needed meds to manage it. If you have a genetic mutation, maybe you need supps to help correct something and then you could manage it with diet changes only. But I see it as a lifelong thing. But that's ok. I'd much rather know I had to take a special form of vitamin B9 every day than take heart medications. As Nicklemama points out - methylation isn't the be all and end all. For some of us, it's been that missing piece. For others, not so much. This isn't meant to be an alternative to Pandas treatments. It's more of a foundational support. My kids weren't getting back to 100% with Pandas treatments. For them, methylation has given us not only baseline, but a better baseline. Yet they remain vulnerable to infections. It's one tool, one aspect of the problem. For us, it was huge. But it's a multi-faceted problem and this is one (important) way to address one of the facets.

You might find this thread helpful on how to use genetic results to improve methylation and it gives some good reading resources http://www.latitudes.org/forums/index.php?showtopic=3928&page=2 (post #18) I wouldn't just test MTHFR - I'd do 23andMe and look at all 30+ genes that play a role in methylation. You can also search the archives for a discussion this past spring about privacy and insurance concerns, just so you make the decision to test with that in mind. When I first learned about MTHFR, 23andMe was in the $500 range, so we only tested MTHFR thru quest and had insurance cover it. I then addressed that one issue and only did 23andMe about 6 months later. But now that 23andMe is only $99, I'd have done the whole thing at once. There were issues for one of my kids that had nothing to do with MTHFR and yet finding the right balance of supplements have made a world of difference. For my other child, treating MTHFR gave us a simial night/day improvement as Peglem, tho instead of fight/flight, we saw a "bipolar" child become Steady Freddie within two weeks. Two caveats - methylation has made my kids far more stable all the time. But it is not a "cure" for Pandas. It's been the thing that's made neurotransmitter levels balanced. But toss an infection into the mix and ask the body to divert resources to fighting that infection and things can still get out of whack - just not as severely or for as long. Their bodies also seem better able to ward of infections before they blow up into episodes. Caveat 2 - you can see improvements quickly - in a matter of days to weeks - once you hit upon the right doses and balance of things. Finding that right balance is not immediate and it's not universal. One body might need 50micrograms of something while another needs 50 milligrams of that thing. When you find the sweet spot, it's easy to feel it. But finding it takes some trial and error. I have to disagree with Pr40 on one comment tho. I don't think you can easily - or even safely - get the same answers by trying this or that, without genetic testing. One personal example is the supplement NAC. For some people, it's a really great supplement - can help with OCD and trichlomania and act as a presursor to glutathione - the master detox agent. But it made my DD flip out and I had no idea why. I then took it for a cough (it thins mucus) and it worked great. But after 2 months, I was depressed and gaining weight and quite by accident, had my liver enzymes checked as part of an annual physical and found my liver enzymes were a mess. I stopped the NAC, had another blood test a month later, and my liver enzyme were back to normal and my depression had lifted (the weight was a little slower to leave, but it too resolved soon after). Had I not coincidentally had the blood work, I could've damaged my liver by using a supplement I'm genetically not able to "methylate" (DD and I have a CBS genetic mutation that hinders our ability to handle the sulfur in NAC). After studying (and studying some more) our specific results, turns out there were other supplements we were taking that were not well suited and there were others that we added after testing that ended up helping a lot. So in my case, I did gain a lot from what I learned thru testing. No, science isn't fully there in the implications, etc. but even in its infancy, the things I've learned about methylation and my family's unique roadblocks have been literally life changing for the better.

My DS11 was on lyme combo abx (2-3 at a time) for 2.5 yrs. The first year was rough, at 18 mos we tried weaning off abx and some symptoms returned. So we did additional abx for a yr. and also addressed methylation. He's been off abx for 6 months and is doing well. He is dealing with yeast issues - but diflucan is his only prescription. The supps he takes are strictly vitamins/minerals. No herbals for lyme. He is still vulnerable to Pandas and I worry about the winter, but I need to know if he can handle it w/o abx - I really don't want him on abx longer than he needs to be due to the yeast. But our dr. will put him back on if we see a flare. (or I may consider samento if it doesn't have the same risk of causing yeast issues). Our LLMD feels you may never fully eradicate lyme if you've had it a long time. But the goal is not to eliminate any trace of a spirochette but instead, lead a symptom-free life. Given the theory that microbes exchange DNA inside biofilms, who knows what lurks and at what point the cure becomes worse than the disease. So I'm ok with simply watching him enjoy (finally) being a normal kid without pain or brain fog or anger. Could we face Pandas bumps ahead? Sure. But I think the lyme isn't an issue for him at this point. So yes, I do think there can be a successful end to treatment.

Florastor is Sacc Boulardis. My DS gets incredibly angry, impulsive, hyper and gets terrible OCD from Sacc B. I know it's supposed to be a "good" yeast and some people like it because you can take it close to abx, but for us, it's a huge trigger. His stool test came back negative for candida but positive for Sacc B. Once we started treating with diflucan, his OCD was gone in 3 days and the rest of his behaviors have vastly improved over the past month. Stop the Sacc B and switch to a probiotic high in bifido cultures (we use this one http://kirkmanlabs.com/ProductKirkman/333/1/Bifido%20Complex%E2%84%A2%20Advanced%20Formula%20-%20Hypoallergenic%20-%20New,%20Improved%20Formula/). Bifido is the dominant probiotic in mother's milk. If you still don't see improvement in a week or so, ask your doctor about diflucan or nystatin. I can't tell you how much a yeast problem can look identical to a Pandas flare in my house.

Philamom - I add borax (along w/ half the suggested amt of soap -since borax "boosts" the sudsiness) to either every load or at least the last load of the day. But even then, and with my peroxide squirting routine into the drain holes (esp. the hoes above the usual water line), I find I need to open up the guts of the machine and clean the outer tub by hand once a year. Granted, it's an old machine (14 yrs) but if you're finding mold, then there's more where you can't see it. It may sound intimidating, but washers and dryers are amazingly simple devices one you open them up. Yes, your model has lots of electronics, but you won't be going near the electronic box. I'd go to youtube and look for videos of "LG toploader dissassembly". I know they have videos for sears brands and generic tip loaders. On mine, it's all held together by two screws. Remove those and two springs and the whole thing opens up. It's a royal pain but not hard. Just time consuming. Takes me about an hour to clean but half of that is spent doing gymnastics, as the laundry room is small and once I get it all opened, it's hard to move around. If you have more space or the willingness to move it into an open space, it's not so bad.

My understanding is that Duke is open to treating forms of encephalitis but not Pandas. I know a few parents who've not been able to find support there.

A the top of the forum are pinned discussions and among them is a topic called "doctors who've helped us." You can check there for someone in your area. I know there've been others from your area. You may also want to browse all the pinned topics. There's a wealth of information there.

My DD had "bipolar" symptoms that had nothing to do with Pandas and everything to do with methylation. Her dramatic stabilization since addressing MTHFR and other genes is what's made me such a fanatic about the topic. I'd check his aso titers but if you don't feel it's infection related, perhaps consider methylation. BTW - mold also sent my DD into a tailspin. All of our window a/c units hadn't been cleaned in years and mold had built up in the drip pans. All summer last year, I was blowing mold spores into the house. It added to her struggles. Since it's fall, that could be a factor. Or if he's in a new classroom, there could be mold from water damage that no one has addressed. But from what you describe, it reminds me of my DD before we addressed methylation.

If you don't rinse food off before loading ( I don't), you need to clean the ridge below the door and around the door seal at least every month. There are also "how to's" on the internet on ways to sanitize your dishwasher periodically. Likewise, you need to periodically clean your washing machine. It's a great incubator for mold. The outer drum above the water line gets sprayed with water and soap but never gets fully rinsed. Mold will grow using the soap scum as a food source. If you have a top loader, you can go to youtube for instructions on how to take your machine apart to expose the outer drum (there's an inner metal drum you can see and an outer plastic drum you can't see). Clean the outer drum with peroxide and a sponge, but run a string thru the sponge and twist it around your wrist. If you were to drop the sponge between the inner and outer drum, it's be a bear to get back out. I do mine once a year and use peroxide once a month, spraying it in the little drain holes, and borax every wash. if you don't clean it and stay on top of it, you end up washing your clothes in mold. One final reminder - toothbrushes. Make sure everyone's toothbrush is stored not touching, keep them at least 6 feet away from the toilet (and flush with the lid down to reduce spray). Replace toothbrushes a few days after someone has an illness. And we use separate toothpastes for each family member. You rub your toothbrush against the tube when you're applying it to the brush. So if you share a tube, it's another way to spread germs. If everyone has their own tube, it's one less way to share a cold.

I think 2 months is long enough for anyone to have to endure. While it could be a herx where the treatment is still causing die-off, if she's still having severe symptoms, I'd say enough is enough and look for another option. When my DS did tindamax, we pulsed 2 days on and 5 days off but even then, his response was so severe that after 5 weeks we had to stop, let things calm down and then try something else. I will say this tho - once things calmed down after that awful 5 weeks, things were really, really improved. Like the sun coming out after a hurricane. (the calming down took several weeks b/c it involved tics and his tics always took weeks to resolve).

Broo100 - Most whose kids get and stay well only check in on this forum occasionally. Many here have kids who haven't reached puberty so it's hard to answer your question. My DS11 is in a great place, off antibiotics for 6 months. But like you, I will watch like a hawk and have a doctor I can call the minute I see something that's cause for alarm. I'm considering supplementing with some herbals that are antimicrobial (e.g. Samento) during the winter but haven't decided. I don't consider my son "cured" but rather in remission. I won't consider things in the past tense until we survive a few winters symptom-free but I do believe that day will come eventually.