LNN

We didn't use Buhner or Cowden. DS never seemed to respond to A-Bart or resveratrol or tinctures. So we stayed traditional. I think Rowingmom is having success tho.

If you're looking for homeopathic ideas, you can PM Stephanie2. She doesn't come to the forum often anymore, but she was so convinced by the improvements her boys found thru homeopathy that she became trained in the subject and now works as some sort of assistant for a homeopath. If you're looking for general info on herbs and supplements that are natural remedies for various bacterial and viral infections, you can post a discussion and several of the members can offer suggestions (particularly those who've used a natural approach to treating lyme). Alternative and natural can mean many things and apply to many topics. There's a natural diet, natural antimicrobials, alternative therapies such as acupuncture or chinese medicine...perhaps if you can elaborate on what alternative and natural means to you, and in what context - to support the body, to fight an active infection, etc... maybe others can offer up what or who they know who can share the info you're after.

I just updated my resume. I can't imagine listing "professional nit-picker" as a skill! But thank goodness they're out there for those in need!

Smarty - no kidding! And it was quite a long list to begin with! And T Anna - yes, very funny that we all approach bacteria with our "sh** kicking boots" on and yet the topic of tiny insects makes us all squirm and scream like "little girls". Just to clarify - my DD does not (yet) have lice. The girl who sits next to her does. So I'm trying to do things to keep it that way. She went to school this morning with somewhat oily hair from the conditioner I put in last night and I'm on my way out to buy some of the things suggested here. Keep all those fingers and toes crossed. I am perfectly willing to not become an expert on this!

Yeah - me too! I about died when the mom told me they only started treating yesterday! I guess I'm glad she at least bothered to tell me. If I hadn't bumped into her and if we hadn't been friends, I'd never have had the heads up.

My DH takes 800mcg. so 1000 is pretty high IMO. My DD8 takes 67mcg every other day. 1000mcg would make her bipolar and evil. You're DD has a lot of other medical issues, and I'm not a doctor. So I hesitate to give any advice beyond saying what's worked for my family. But if you don't like what you see, you may want to call the doctor and discuss significantly lowering the dose and tapering up over many weeks if needed. We found our magic dose by going low, building up past what she needed, seeing rapid mood cycling and then stopping for 7 days to let everything calm down. We re-started at 67mcg and when I went to every day, small signs of the rapid cycling came back. When I backed down to every other day, she stayed steady and happy. Since your DD is closer to an adult, she would probably need more, but I'd get your doctor's input.

I love this forum. You guys are great! Thanks for all the info, esp. the product recommendations!

You also need to make sure she has adequate B12 as B12 and methylfolate are co-factors and only do their jobs when both are present. Start very, very low - like below 100 micrograms. Too much too soon can make symptoms worse. many of us end up figuring this out on our own, as most doctors don't have experience. But your daughter's situation is so complex, I might try to find professional help. There's a list of doctors who understand/treat methylation issues on www.mthfrsupport.com

Sorry for the non-Pandas post, but I need the experience of moms on this one, not just some internet searches. I just picked up my DD from school and while I was waiting for her, my friend came to pick up her DD, who sits right next to my daughter in class. My friend says "when you get home, check your daughter's head. My daughter has lice" Yikes! Apparently her ex saw the girl scratching the back of her head madly and found the lice over the weekend. He started "treatment" yesterday (not sure what that consists of - some sort of medication that smells nasty and bleaching sheets is all I got from the mom). The mom, who has joint custody and was picking up her daughter for the first time since the discovery, couldn't tell me much more. As I said, my daughter sits right next to this girl and like most girls, not particularly aware of personal space - lots of touching and close-in whispering and sharing of items. So...for those who've been down this path...what do I do? Can I pre-emptively shampoo her hair and use some lice treatment? Do I need to wait until she starts scratching? If I'm going to need to bleach sheets, should I put on white sheets before tonight? Don't feel like ruining the green ones that are on the bed right now. How do I protect the rest of us? Can a dog get lice? Do they get in carpets? Aye yie yie...

I don't have any good advice to offer but wanted to wish you success with the consult. I hope you get some good guidance!

I had two thoughts after reading your posts. First was that your son might've developed a yeast infection sometime during this treatment protocol and perhaps what you're seeing isn't PANDAS but yeast. Yeast infections cause my son to be very hyper, unfocused, impulsive and most definitely increases his OCD. You can do a blood test for candida antibodies but candida isn't the only yeast. So if it came back positive, you'd have a smoking gun but if it came back negative (my son's did), it might not mean there wasn't some other fungal infection. We eventually did a stool test and found Sacc. Boulardis,, which is Brewer's Yeast and is generally a "good" yeast - lots of kids on the forum take it as a helpful supplement. But for whatever reason, Sacc B makes my son very hyper, impulsive and edgy. He's been on diflucan for a week and his behaviors have gone from a 5 to a 0.5 The second thought I had is that after my son's one and only HD IVIG, he totally tanked. My son had "classic" Pandas, flares from confirmed strep infections. But we couldn't keep him in remission, so we eventually did IVIG. When he didn't follow the script and instead went thru 10 weeks of he**, both our Pandas docs agreed that some other infection was involved. My son turned out to have lyme, but other infections can also keep PANS brewing - mycoplasma, bartonella, chronic viruses...So if a few weeks from now you're still tied in knots, and yeast doesn't turn out to be the issue, consider exploring other infections. My son has Pandas - is still susceptible to strep infections, but also had a second infection (lyme in his case) that kept things stirred up. For us it wasn't either/or, it was both. Finally, I'll mention methylation as a topic you might want to think about, only because when you're a parent searching for clues, I think it's good to have multiple sticky notes of topics to explore, in the event there's more than one culprit on the loose. Methylation is your body's way of using vitamins, minerals, proteins and amino acids to make all the cogs turn properly, help your body create energy and most importantly for Pandas kids, it's what helps the body turn food into neurotransmitters. Some of us get our kids to 90% and then can't seem to get that last bit back. Finding and treating methylation problems can help the body get past that roadblock that antibiotics alone can't remove. For the immediate sleep issue, you may find melatonin, gaba or valerian root helpful. These calming supplements work best if taken about an hour before you actually want him to be asleep.

It does sound like advocating for stronger abx and looking into lyme are both wise. Read the Pinned Threads for lyme at the top of the forum for some good background info. I don't recommend self-diagnosis or self-treatment (even doctors should never treat themselves). But...you also need to be able to function while you wait for an appt. with Dr B. If you're at a point where you just need to try something, you can check out Stephen Buhner's site for some ideas http://buhnerhealinglyme.com/ and while you're lying on the couch, read Pam Weintraub's Cure Unknown and watch the movie Under our Skin. For lyme support, lymenet.org has been somewhat helpful for me but I suspect there are better ones out there.

Are you looking for tests to support a Pandas dx or tests that can give you ideas on supporting general health and neurotransmitter production/balance, regardless of Pandas? For Pandas, you can do the Moleculera Labs (aka Cunningham) test that looks for auto (self) antibodies against 4 key neuronal receptors and measures your levels of CaM Kinase II (a measure of cytokine response). Docs in the Pandas community give a lot of weight to this test as does the NIMH/Swedo but most docs don't let this test sway them. If they believe in Pandas ahead of time, the test will be interesting to them and may make them more comfortable prescribing abx without high strep titers. But if the doc doesn't believe in Pandas, the test results aren't going to change his/her mind. http://www.moleculera.com/testing/ The test is $925 and I don't know if anyone's had insurance coverage for it. We did it when it was in trial phase and was "only" $400 but out of pocket. You can also do blood tests to measure ASO levels and Anti-DNase B levels (these are antibodies against strep). Both should be covered by insurance, tho many labs are unfamiliar with AntiDNase B and you'll need to watch over their shoulder to make sure they run the right test. But in general, you'll only have a high ASO if you measure 1-3 weeks after a strep infection. AntiDNase B levels rise 3-6 weeks post-infection. So catching that window can be tricky, making a "normal" result inconclusive. Also, some people don't produce high titers. However, a high level would certainly support that you had a recent (or current) infection and help a doctor feel more comfortable prescribing abx or making a dx. If you're looking for other tests that help you rule things in or out or support your overall health, I'm a big fan of 23andMe. It's a legit test - I believe they use Labcorp to run their tests. Is it informative to a doctor? My LLMD found it somewhat helpful, my PCP looked at me like I had two heads. My OBGyn uses a similar test to help patients with infertility issues. But I've ended up becoming my own "expert" and guiding myself. But remember, the human genome was only unraveled 10 yrs ago. Understanding what various mutations mean and how to work around them with supplements or diet or medications is in its infancy. It's too new for most docs to understand or feel comfortable treating. But that doesn't make it illegitimate. People with ulcers 50 yrs ago still had h. pylori, not stress, as the cause. The fact that a dr. didn't recognize that doesn't make it less true. But there are privacy issues with doing any genetic test with any co., so you need to make your own decision on this one. We've also done stool tests with metametrix and nutritional blood work with Spectracell that I found helpful. the stool test found yeast, told us what strain and what would be effective to treat it. The Spectracell told us about a few vitamin and mineral deficiencies. For lyme, there's no great test. The best you can do is probably Igenex. Under the pinned threads at the top of the forum, you'll see some threads for lyme. In there are some discussions of tests and what bands mean. The reason Igenex is preferred is that in 1990, they came out with a lyme vaccine that targeted bands 31 and 34 (I think - my memory is fuzzy on details). That's because these bands are unique to lyme, not produced by other bacteria. But...anyone vaccinated would test positive if the labs used these bands for screening. So most labs do not test these bands, even tho they're among the most definitive. The vaccine was a complete failure and was pulled from the market after only 18 months. It made people who were genetically susceptible (having certain HLA-DR gene mutations) very, very disabled. But the CDC never changed their testing guidelines to add these bands back. So doing a lyme test thru labcorp won't test for these bands. Igenex is one of the few labs that does look for these bands. That said, if you've been sick for a long time, your body can stop making antibodies to lyme. So you can have it but still get a negative result. Lots of controversy. But if you're going to test for lyme, I'd suggest Igenex or Advanced Labs, which doesn't test antibodies but rather tries to culture lyme spirochettes from your blood sample. However, even this test has its shortcomings. Lyme is no easy path, for sure.

My son and I have pyroluria (aka KPU if you decide to ever search the archives of the forum - it was a "hot" topic back in '11-'12 when some of us were discovering lyme). We were really struggling to hold onto gains he'd make - and they'd slip away. Or he'd start a lyme treatment and it would help but his brain fog remained. When we finally discovered the pyroluria and treated, it was like someone came into a dark room and turned on the light. I remember 3 days after he started taking supplements for it, my DH and I looked at each other with our jaws on the floor. DS was suddenly "present" in a way he hadn't been in years. It didn't cure everything, but it was dramatic. I think someone else here goes to Mensah - (smartyjones?). Here are some background articles: http://betterhealthguy.com/images/stories/PDF/kpu_klinghardt_explore_18-6.pdf http://naturalinsight.hubpages.com/hub/Pyroluria-A-Hidden-Disorder http://www.biobalance.org.au/_downloads/acnemjournalnov10.pdf (starts on p3) If you do the test and want Klinghardt's guidelines, PM me and I'll email them to you. Some labs only require one urine catch but Klinghardt suggests doing a 24 hr catch. Pyrole levels fluctuate thru the day, so one catch may not reflect what's going on the rest of the day. If you combine all urines for 24 hrs, he feels you get a better daily average. Also remember to be off of all vitamin and mineral supplements (staying on abx is ok) for 5-7 days before the test.

Interesting NYT article that really underscores the importance of what sort of bacteria we're nurturing thru diet and any particular probiotic blends we use... http://www.nytimes.com/2013/09/06/health/gut-bacteria-from-thin-humans-can-slim-mice-down.html?pagewanted=1&_r=0 Gut Bacteria From Thin Humans Can Slim Mice Down By GINA KOLATA Published: September 5, 2013 The trillions of bacteria that live in the gut — helping digest foods, making some vitamins, making amino acids — may help determine if a person is fat or thin. Dr. Jeffrey I. Gordon, left, and Vanessa K. Ridaura are two members of a scientific team whose research shows a connection between human gut bacteria and obesity. The evidence is from a novel experiment involving mice and humans that is part of a growing fascination with gut bacteria and their role in health and diseases like irritable bowel syndrome and Crohn’s disease. In this case, the focus was on obesity. Researchers found pairs of human twins in which one was obese and the other lean. They transferred gut bacteria from these twins into mice and watched what happened. The mice with bacteria from fat twins grew fat; those that got bacteria from lean twins stayed lean. The study, published online Thursday by the journal Science, is “pretty striking,” said Dr. Jeffrey S. Flier, an obesity researcher and the dean of the Harvard Medical School, who was not involved with the study. “It’s a very powerful set of experiments.” Michael Fischbach of the University of California, San Francisco, who also was not involved with the study, called it “the clearest evidence to date that gut bacteria can help cause obesity.”

Interesting first article - where does it come from? I couldn't tell anything about the author or site. (just curious - it doesn't make the info less credible from what I can tell). Nitshel - as far as I can tell, this is like a math problem. No single gene tells you for certain whether you need more or less methyl groups. It's the blend of genes (COMT, VDR Taq, MTHFR, MTR, MTRR, probably others) that, taken together, tells you if you should be using methylB12, hydroxyB12, adenoB12 or some combo of these. (just about everyone seems to agree that cyanoB12 is garbage). So if you have 3 genes that have 2 pennies each and two genes that have one penny each and one gene that actually is in debt by two pennies, and the goal is to get to 5 pennies total, you'd use a small amount of niacin, which costs a penny, leaving you with the magic number of 5. (3*2)+(2*1)-2 gives you a genetic total of 6. So spend a penny (-1) on niacin and that will suck up enough to get your load to 5. (pennies=methyl groups). The thing is, no one can peak inside and see exactly how your diet and supplements and genetics are working together in your unique body. There's no bank statement that says "you have a balance of 5" or "you have an excess balance of 10 - consider buying something that uses 5 methyl groups" You have to make an educated guess and then buy the smallest bottle of a B12 you can and give it a try. My DD and DH have similar genetics on the genes that seem to influence methyl groups. My DH is taking hydroxyB12 and my DD prefers methylB12. You'd think they'd take the same things. But their diets are different. So I can only shrug and go with what they tell me they feel better on. (now, my DD also doesn't like the texture of the hydroxyB12 that my DH takes, so she could be basing her strong opinion on that and not on how it makes her feel, but I can only do so much). I think the hardest part of understanding heartfixer and yasko and all the support sites that talk about this stuff is that you need to interpret everything based on your own unique combo of snps. It gets very confusing. I can't tell you how many times I read something, developed a plan, went off and started a supplement and then a few months later had this lightbulb moment where I thought "you idiot - you forgot about xyz. You're doing it wrong. You should be using abc instead". That's how I've learned to go low and slow on doses. If I'm going to get it wrong, better that I get it wrong on a low dose It's also why I'm so geekily happy to hear other people's thoughts on the whole thing. Because there's a big difference between having read something a few times and really being fluent on the subject (I am NOT fluent)- and it's a subject that's changing all the time as people report back on what worked or as thinking evolves from the gurus. It's both exciting and frustrating and a bit "risky" in that we're all figuring this out as we go along. But that seems to be par for the course in Pandas, lyme, chronic fatigue - all the areas where patients are left to fend for themselves. Happily, Yasko and the doc who wrote heartfixer and some others seem to have it mostly right and their advice seems to be pretty decent - provided you always do some due diligence and use only the supplements that are absolutely necessary. Heartfixer lists several supplements you can take for CBS. But if you look each of them up, there could be reasons they might not be right for you. For example, they talk about Yucca's ability to remove ammonia. But Yucca is estrogenic. I don't want to give my per-pubescent daughter or my perimenopause self an herb that's estrongenic. L-carnitine should not be used by people who've had seizures. My DD had a febrile seizure as a toddler. So I hesitate to use that for her. Now there's this whole question about ammonia and molybdenum. A great issue I need to get my head around and make a personal decision about. And yet doing nothing isn't an option either. I've seen so many positives from treating methylation issues that I can't see a day when using supplements isn't part of our mornings. But the exact blend of what's in each of our pill pile evolves as we all learn more. I guess you just have to try something and see.

Ok - you put me onto quite a research project on this moly question! There's a confusing conversation on the FB mthfrsupport page between Sterling Hill - the person behind MTHFR and a few people who seem to understand chemistry. Sterling says molybdenum naturally contains ammonia and you need to find a product where they've removed the ammonia. Another poster (Birgit) says "hold on - if you take something out, you no longer have molybdenum." So being an art major, not a science major, I'm not sure who to believe. https://www.facebook.com/mthfrsupport/posts/545209258830649 Apparently, it's nearly impossible to find a liquid form of moly that isn't bound to ammonium (most minerals have to be bound to something to make them ingestible). You can get capsules of moly that are ammonia-free (but then, is it moly? - I got confused in the thread). But the capsules are all high dose - 500 mg when my kid only needs 75 micro grams. So that's not an option, IMO. In the thread, Shawn Bean, who's a nutritionist who treats people with methylation problems (and seems to know this stuff well), recommends a liquid that doesn't contain ammonia as a chelating agent but you need to be a practitioner to buy from the co. he likes. So scratch that. One person does say Solgar's Molybdenum tablets do not contain ammonia and their product is only 150mcg - so that may be an option if your child can swallow pills or if if doesn't have a taste and you can crush it. http://www.solgar.com/SolgarProducts/Chelated-Molybdenum-Tablets.htm So is the ammonia in Yasko's product an issue? I just don't know. I've been using it for 6 months and haven't noticed any problems. (Warning - TMI ahead) before I started using it myself, my urine sometimes had a sulfur-y odor. Since starting the moly, that smell has disappeared except when I eat high sulfur foods. However, I don't use the sulfur strips so I don't have any numbers to "factually" tell if the Ammonium Molybdenum has been an issue or not. One thing ths FB thread mentioned was that molybdenum can be a copper chelator, so taking a high dose of moly can cause copper dumping. Someone speculated that if moly makes you feel bad, it may you have high copper and what you're feeling is actually the effects of copper being dumped. Bottom line - I don't know. But it's a great observation - something I never gave thought to. You probably made the right call in stopping the moly for now until your son stabilizes. Just let the augmentin do its thing. Maybe do a few urine strip tests while he's off the moly to get "baseline". Then when he starts to be more himself, do another trial and see where the numbers go. Supposedly, the numbers can drop for a but and then spike up as the detox process happens, and then go back down again and stay down. Please keep me posted - you've certainly got my attention!

My friend Barbara has a son who has traditional OCD, not Pandas. But she often writes some great blogs on life with OCD - very funny sometimes. She just dropped him off at college and has some helpful ideas on how to get OCD kids thru major transitions. I thought I'd share her post as a reminder that things can and do get better. There were times her son was crippled by OCD. But together, they pulled through. http://www.easytolovebut.com/

DD8 has severe dust mite and environmental allegries (mold, pollen, ragweed, grass). Allergy shots (from immunologist) helped a lot but DD's needle phobia got worse and worse as we graduated from weekly shots to monthly shots (less exposures = less ability to cope with her fear). I also went thru one of those phases where you come across a topic and start to see that problem everywhere - you know, suddenly you see Pandas everywhere and then you learn about mold and you see mold problems everywhere, suddenly realizing every building you go into has a musty smell... well, about the time we were starting to have real issues with needles after 18 months of shots (having to restrain her, screaming, tears), I went on an anti-aluminum, what the heck is in this shot as an adjuvant, all "vaccines" are evil kick. So we stopped the shots. But they did work well for her. About a year later, we went to our ENT for another reason and found out he uses sublingual allergy therapy - one drop of an antigen under the tongue 3 times/day. No tears, no issues. Studies show they reduce symptoms by about 40%. I'll know better when next spring comes around. But the co. assures me there are no chemicals or msytery ingredients. He told me what they use as a preservative (can't recall now) but it was a non-issue as far as safety was concerned. So that's another option if you can find it. We bought the bed encasements (Mission Allergy is a great co. to work with and has great products) and they made a huge difference. DDs chronic cough went away. We also run the blanket and stuffed animals thru the dryer every week. We use zytrec during allergy season. Keeping histamine in check definitely helps with moods as well as helping her feel better.

You can go to http://lymenet.org/ and join their flash discussions (on the left of the screen). Then go to the section "Seeking a Doctor" and people can offer suggestions for your area. In the meantime, for the fatigue, you can have his thyroid and cortisol levels checked as well as his B12 and zinc levels - that would be covered by insurance. Sublingual methylB12 and CoQ10 have both helped my daughter with fatigue issues, as has addressing her methylation issues. Zinc really helped my son's brain fog and phopshatidylserine (sold as PS100 on amazon) has helped with focus. FWIW - my DD had similar "maybe but not slam dunk" Igenex labs. We were already treating my son for lyme (he had much clearer labs pointing to lyme than she did) so our LLMD put my DD on 6 months of bactrim + zith. She improved in some symptoms but not in fatigue. When I discovered methylation and we started treating her specific genetic issues, that's when we were finally able to get her energy levels back up this summer. (sublingual methylB12 and CoQ10 were the supps that helped her the most in terms of energy).

You can try Enhansa but I'll pass along my son's experience FWIW. Like your son, my son is MAO+. Enhansa is an MAO-A inhibitor. When you have an MAO-A + mutation, this is a down-regulation, sort of a natural inhibiting effect. So people with MAO-A+ may not do well on an MAO inhibitor (e.g. an anti-depressent) because it's a double whammy - a drug that inhibits dopamine/seratonin degradtion along with a genetic inhibitor. In my son's case, we did a week of Enhansa 1/day and it was ok, not great. The day we went up to 2/day, he was raging and aggressive and unable to control his temper over the slightest thing. We stopped immediately and he was fine the next day. On the other side of the methylation cycle, my daughter is CBS+ like your son. They need to avoid sulfurs. Curcumin is a high sulfur. Enhansa made my DD irritable and moody. It's not expensive and you can give it a try but based on your son's snps, it may not be a good fit for him. Like Ariel, we've used ibuprofen for long stretches - weeks at a time, dosing 3x/day during bad flares, then tapering to 2 or 1/day as things improved. We tried resveratrol (Japaneses Knotwood) like Rowingmom but it didn't have a noticeable effect for my son the way ibuprofen does. I have yet to find anything that works as well or as quickly as ibuprofen.

Finding an MTHFR issue was one of the best thngs that ever happened for my DD. The change in her since treating this is indescribable. She went from a kid bound for bipolar meds to a kid no one would ever, ever consider unstable. Have you tested other genes or only MTHFR?

Yasko's molybdenum is this same form http://www.holisticheal.com/molybdenum-drops.html so I think you're ok on what you bought. Yasko says you should treat CBS for 6 weeks before addressing anything else. Especially if there are detox or metals issues. But if your son's behaviors are hard to handle and you aren't going to add anything else for CBS except the moly, then I suppose you could try to add MTHFR support sooner - but I'd personally wait a minimum of 2 weeks with the moly first. What you might see with the moly is that the sulfate strips start out with a low number, then spike up after a few days of adding moily, then start to go down again. It's when they stat to go down and get below 800 that you're supposed to move on to other snps. Starting another snp before the body's ready just makes things murky. But I'd think if your numbers start to head in the right direction, then you could slowly start methylfolate/methylB12 without getting hung up on an exact number (I never used the strips - so can't give any specific advice). The moly probably won't helo with any behaviors. It's just helping with detox. It's like putting down a coat of primer before you paint. It won't give you the result you're after but it makes the finished product much better. On the Vitamin D - from personal experience, you really need to force yourself to add only one thing at a time. From your son's behaviors, and with his MTHFR being compound heterozygous on C677T and A1298C, I'd add methylfolate/B12 before addressing the D. Give yourself 4-8 weeks to find a good dose and figure out if he needs straight methylB12 or some blend. By then, you'll be into late fall and you can make D your next target. But I wouldn't mess with D supplements before you have things stable with the methylfolate. It really does need to be one thing at a time or you'll end up having to stop everything and start all over if things get nutty because you won't know what the culprit is. On gaba - I'd put this one lower on the list. It's possible that addressing the other issues first eliminate the need for gaba. I don't know if it's ok for a 3 yr old. But you'd certainly need a very low dose - lower than what's generally available in supplements. So I'd hold off until much later. JMO.

We pursued infections and methylation at the same time. Since DS had lyme, it was a long (years) treatment path. We couldn't stop abx just to do methylation and we coudn't make sustainable progress on the infections without also clearing the roadblocks due to methylation blocks. They went hand in hand. But...only change one thing at a time. Don't change an abx in the same time frame you're working on adding a supplement for methylation if possible. Peglem - your posts keep making me smile!

Jill - You have me looking for the 800 number again. What brand did Dr O suggest you use? DeeDee - I assume you're using Holistic Health?