LNN

While you're waiting for your appt, you might want to ask over on the lyme forum if there were labs that dr J ordered that you could get run in advance (perhaps ordered by Dr B or your local dr?). Things like your HLA-DR gene status (which must be run thru Labcorp) will tell you ahead of time whether you're likely to have a hard time with herxing/detox and/or with mold issues as part of the picture. Maybe there are other things he also looks for frequently that you could have with you for your first visit. Might make you feel like you were doing "something". I would also read up on detox ideas and various lyme treatments that compliment antibiotic therapy. As I understand it, Dr J doesn't provide much guidance in terms of detox, yet it can really help in the rough times. I found some good books for free on google books (some pages were omitted but I was able to get a lot of helpful ideas. Here's one: http://books.google.com/books/about/Insights_Into_Lyme_Disease_Treatment.html?id=ZFMRKZ2uoW4C

Coxsackies is a virus, so if you havent' seen titers go down, I'd say the past treatment wasn't sufficient and could be contributing to your issues. L-lysine is my go-to antiviral. It's OTC. It doesn't work for every virus, but it's helped my DD overcome EBV and HHV and recurring cold sores. You may also need to give the IVIG more time. Many people report having to wait many weeks to see progress. My suggestion would to leave everything as-is for at least 4 weeks post-IVIG, maybe 6. Otherwise, you'll never have a good feel for whether it helped and if you're faced with having to decide on a 2nd IVIG, you won't have an uncomplicated recovery to look back on. Once you feel you're going to see all there is to see improvement wise, then I might try l-lysine for 2 weeks or a month of an antiviral and then discuss different abx options. JMHO

Yes, to me the symptoms were identical. OCD, tics, lability, anxiety, esp. separation anxiety, adhd... It's why others were suggesting lyme to me but for a year, I dismissed it. Now, with 20/20 hindsight, there were symptoms I blamed on Pandas that seem more due to lyme - hair-trigger anger, muscle pain and brain fog. But my son probably had lyme first, then Pandas when a few months after his tick bite, he got strep. So I always saw all symptoms thru a Pandas lens. To me, they all came so close together, there was no easy way to see a difference between the two. What's more, there were a few symptoms that I blamed on Pans that had more to do with methylation/pyroluria. A few I blamed on Pans, like the reading/academic issues, that were in part caused by convergence insufficiency. So it all got wrapped up in one big ball of string that we've spent years unraveling. Antibiotics, detox, integrative medicine, supplements, ERP therapy, vision therapy and time - have all played a role in getting him better. One single label didn't fit. One single treatment didn't get the whole job done. It was truly a patchwork quilt of labels and treatments that have put humpty dumpty back together again. But to answer what I think is your question - yes, the things you're seeing could easily be due to lyme.

My daughter also had a problem with underwear. She also, to this day, dislikes regular pants with zippers or pockets (too bunchy). So we let her wear leggings without underwear while we worked on other issues. So bear in mind not all compulsions need to be conquered at once. Pick the ones that are easiest and/or the most critical in terms of functioning. Put the other stuff lower on the "to do" list and let it slide for now. We too do ERP at home without a therapist. If I knew of a good one who was close by, I'd love to be able to get professional coaching,as I'm sure I'm doing some of it "wrong." But our funds go toward medical first, leaving little left to shop around for an ERP therapist. I did interview two over the phone - one didn't work with young kids (mine was 4 at the time) and one didn't seem to grasp our situation and I didn't feel like educating him on my dime. But certainly call and talk to the therapists - maybe you'll get lucky. If not, here are some ideas: For the bathroom avoidance - we told my daughter that if she didn't go to the bathroom at least once in x hours, she'd have to wear a pullup. She found this unacceptable and with much tears and protest, she did go to the bathroom, where she'd sit on the toilet and say she didn't have to go. I'd sometimes try to let nature work on my side - turn on the faucet, make her drink while she was on the toilet, tickle her - eventually, she'd relent and release. Then of course, the wiping would start. You can ration her toilet paper - give her xx feet and say that's all she gets. When she protests that she's still wet, put a carefree pantyliner in her underwear (or leggings or whatever it is next to her bottom). Tell her if she's still wet, the panty liner will absorb it. This of course will cause lots of tears and protest. Be firm. Also give the school nurse a change of clothes to keep on hand just in case. Your daughter doesn't need to know this. You can tell the nurse/teacher any story you want (UTI, etc). No need to get into Pandas or OCD if you don't want to. For the feels right stuff - we have lots of that. For underwear, this was low on our list and she wore leggings without underwear for a year. My only requirement was that her private parts were covered. Beyond that, who cares. But when it was time to tackle this, I had her wear her underwear for 2 minutes and set a timer. If she could make it the full 2 minutes, she got a prize that was worth 10 points. If she tried even 10 seconds and then failed, she still got a prize worth 5 points. You need to celebrate the willingness to try, not just the success. Then as others say, you stretch the goal - now wear it for 3 minutes, then 5, then 10...(a few years later, she now hates to NOT wear underwear - kinda funny). We treated prize points like money. At first, she wanted to spend her points at the prize store right away. Eventually, she saved her points up so she could buy more expensive rewards. For 5 points, she could reach into the prize box and pull out an item that was purchased at the Dollar Store. For 10 points, she could have junk food for breakfast. For 30 points, she could stay up 30 minutes past her bedtime. For 50 points, it was ice cream at the local restaurant. For 100 points, it was an afternoon spent as an "only child" with one parent (we'd leave the "evil" brother at home with the other parent for the day). Prizes don't have to cost money. We had things like "for 30 points, mom will do the funky dance in public", "for 25 points, you get to skip your chores for the day". The key was to have lots of rewards waiting, and not just for successful ERP tasks - but for even attempting to say no to OCD. Maybe even for "catching" OCD in the act and realizing it was an OCD thought - 3 points. What you'll learn from John March is that your role is to be the coach and the cheerleader. You need to put yourself in your daughter's corner. You're not the enemy. But you also can't do this for her. She's in charge but you will reward her for trying. Make it fun. Having OCD is terrifying. Humor helps a lot. For going upstairs alone, I'd initially go halfway up the stairs and sit, talking to my daughter the whole time she tried to make it past the top step and into her room to get a pair of socks. She could see me and hear me. But she had to go alone. Even if she got two steps into the upstairs hallway and came fleeing back, she got points. As long as she tried, I'd often relent and get the socks for her. But she had to try first. The goal was always to push her until she was moderately uncomfortable but not freaked. The goal changed based on that, not based on what she could or couldn't do yesterday. Eventually, I would only stand at the bottom of the stairs. If she wouldn't go get her socks - wouldn't even try - well she'd have to wear shoes without socks. It wasn't going to kill her. But I only pushed once she'd shown me she was ready to be pushed this hard. And all she had to do was try. If she went up two stairs and then froze, I'd get the socks. (I always knew a Pans flare was ending when she'd suddenly bound up the stairs as if it had never been a problem). For the toothbrush - have her brush only with water. But she must brush. If she's worried about toothpaste, try baking soda. Or she must let you use a wet wash cloth. Something to clean her teeth. The consequences are too serious to give in to this one, IMO. But there can be compromise. I'd put this one toward the top of my ERP list. Tooth decay can become a Pans trigger. For the "witch" in her room, my daughter had a gorilla who lived in the ceiling fan. We did a few things for this one. First, we made a joke out of it and turned it around to make the gorilla her protector. Make friends with the gorilla because all the other creepy crawlies are also afraid of the gorilla and he keeps your room safe. The gorilla is lonely and wants you to be his friend. And even if he ever did decide to scare you, you have fart power. Darling daughter of mine, I have been on the receiving end of your farts and trust me, no gorilla could survive one of your farts (lots of giggling - but it gave her "power" over her fears). We also practiced "color therapy" - using visualization, deep breathing and the soothing power of certain colors to help her relax and calm down. The idea is that your daughter defines "good colors" Let's say yellow. And a bad color - maybe black. You have her dip her toes in imaginary yellow and breath the yellow into her body - suck it up into her toes like her body is a straw. Hold for the count of 5. Then blow out, sending the black worries out of your mouth. Then suck up more yellow up to your knees, blow black out. Then suck yellow up to your belly button... you walk her thru the deep breathing until you're up to her eyeballs. This helps her relax, visualize and gives her a tool. This is our story http://www.easytolovebut.com/?s=color+of+worry&submit=Search For the handwashing, I have to defer to other experts. We thankfully never had that one. One other thing I found helpful was to put myself in my daughter's situation. When I found myself out of patience, I'd put on a scratchy sweater or put a small piece of dental floss between my teeth and leave it there. It's very annoying and distracting and all you want to do is make things 'feel right" again. Very hard to do something else while you're feeling uncomfortable. Or rub the hair on one eyebrow "against the grain" and push the hair toward the bridge of your nose. Feels icky. Things like this would help me have more empathy. The other thing you can do is search this forum for posts on "ERP + Meg's Mom" Meg's Mom is an awesome ERP advocate who's no longer on the forum but posted many helpful threads about how to do ERP for young kids at home. They used to travel 3 hours each way, every week, for ERP therapy. She and her daughter became real pros.

Joyful - so glad to hear it! Just one thing - when you add something new, try to add only one thing at a time, with a week or two before adding in anything else. Otherwise, if you see a change - good or bad - you don't know what caused the change. Also - check the dosing. I thought advil was every 6 hours. And you may want to post a separate question - I'm not sure doing advil and tumeric together is recommended. Tumeric doesn't help my son, so I'm not current on info. But generally, using more than one anti-inflammatory at once needs to be done with caution or a little research just to double check.

For a long time, parents here have reported that teeth issues can trigger a flare. Perhaps because the mouth has so much bacteria and when a loose tooth breaks the gum open, it allows bacteria into the blood stream. For whatever reason, it's a common trigger for our kids. When my kids behaviors start to change and I know they have a loose tooth, I have them swish twice a day with Peridex - it's an antibacterial rinse we get from our dentist. He gives it to patients who've just had root canals and crowns. If you can't get that, listerine w/o alcohol can also help, as does motrin. You can also consider a zinc supplement or something like Zicam to help the immune system.

JAG - that's kinda where I end up too. It's not all "Pandas" and when infection is gone, everything is honkey dorey. Latimer told us years ago not to do a neuropsych eval during a flare because we'd be measuring the impact of the disease. Wait until things were settled and then measure if anything remained. We did just that and while there's still a considerable swing/decline during a flare, there is some baseline stuff that we're needing to deal with. Some may be due to harm done by some many years of chronic infection, some may be due to the way DS's brain built accommodations to bypass circuits that weren't working, and I think some stuff was there in toddlerhood before the s*** hit the fan. I guess that's what makes me so interested in the epigenetics stuff. It may hold answers for baseline things we can "fix". Further complicating the story is that some genes, like COMT, effect the rate at which dopamine is dissipated/used. This NY Times article talks about how your rate of "metabolism" if you will, greatly effects executive functions and decision making. http://www.nytimes.com/2013/02/10/magazine/why-can-some-kids-handle-pressure-while-others-fall-apart.html?pagewanted=1&_r=5&hp& Still, helpful discussion. BTW - PowerofPrayer - there are additional triggers for tics beyond dopamine. Glutathione levels and your ability to rid your body of toxins can also cause tics. Things like a herxheimer response to a bacterial or fungal die off can trigger tics. Your HLA genes play a role as well. None of it is simple.

This is an incredibly long article from Time - took me all day to read it because I kept getting disgusted and had to walk away. I kept thinking about how we struggle to get medical help for our kids while these hospital CEOs make millions in salaries. http://healthland.time.com/2013/02/20/bitter-pill-why-medical-bills-are-killing-us/ It's an eye-opening read. Bookmark it just in case you ever find yourself on the wrong end of a medical bill.

Well, it certainly puts a more favorable light on ADHD meds. So often, I hear it slammed - "I'm not going to give my kid a stimulant!" - but if you frame it as "I'm going to give my kid something to help raise his dopamine into a normal range" - same drug but a completely different spin, eh? And while I still lean toward DS being low dopamine (motor issues, attention issues), there is a history of family addiction and let's not overlook video game addiction (not that anyone here has ever had to deal with that) Finally, to further complicate JAG's last question of recptor blockage vs. overproduction, while the cleft puddle is busy filling up with "excess" dopamine, neurotransmitters "oxidize: while in that cleft (i.e. they "rust" and degrade and become unusable/non-recyclable) over time. That's why when you take an anti-depressant for a long time, it "poops out" and stops working. Unless you put new dopamine into the system, you eventually run too low on dopamine and no matter how much you increase your anti-depressant dosage, it stops working. So you do the long (6 week) process of tapering off and the the long process (6 weeks ) of starting a new anti-depressant. The whole time, you're contributing to oxidative stress and cell damage while the raw material (dopamine) puddles instead of being re-uptaked (?) by my friend Al. Great discussion. Now someone tell me what to do!

It really needs the methylB12 to do it's job well. But I know you're leary. You could try adding methylfolate by itself for a few days and then adding methylB12 - sort of priming the pump if you will...and having some niacin on hand in case...

So...if the receptor is blocked because an auto-antibody has shoved its way into the receptor, it prevents that receptor from re-uptaking the dopamine puddled up in the cleft. Does this cause neuronal signalling from the blocked receptor (I'll call him Al)? Al says "Hey Bob, send more dopamine - I'm not getting enough!" So Bob, the sending dendrite, sends more dopamine. The cleft puddle gets bigger. (thus, too much dopamine). But...Al still shows symptoms of too little dopamine. He's not getting what Bob is sending. Can you then have too much dopamine outside the neuron and too little inside? It would then become a balance problem (within vs. outside of the neuron) rather than too little or too much in the overall system? Because as Jill said, I swear my son looks like too little dopamine. (FWIW - neither of his D measurements were out of range yet he ticced severely). The attention deficits clearly get in the way of academics, even when in remission. And then I have the question of the state of affairs when not in a flare. As Jill asked earlier, can you have a general state of low dopamine when in remission that would benefit from tyrosine or amatadine or something that boosts dopamine re-uptake?

We use Source Naturals MethylCobalmin 1000mg sublingual tablet and Yasko's liquid Methylmate B http://www.holisticheal.com/methylmate-b-nutritional-supplement.html Some have found they like a combo of both vitamins together - Thorne and Yasko both sell combos. But since my daughter seems to need such a small dose, I've found the separate supplements better suited for tweaking doses. Someone mentioned Yasko's Methylmate B contains rosemary, which may lowers your seizure threshold if you're inclined toward seizures. My daughter has had one febrile seizure 4 yrs ago and one clonus incident last month due to an anticholinergic response to cold meds, so I was concerned about the rosemary. But she had a normal EEG last month and the methylfolate drops haven't seemed to cause her any issue. I mention it only as a fyi. How did I arrive at the dose? Trial and error. There's no universal protocol on dose. Some of the practitioners who write a lot about methylation (Yasko, Lynch, Van Konynenberg) use 400mcg as a rough target for kids - building up to that dose slowly. That proved to be way too much for my daughter. Using this case study as my guide http://mthfr.net/overmethylation-and-undermethylation-case-study/2012/06/27/, when my daughter was flipping out on me last summer, I gave her my best approximation of 50mg of niacinamide and it stopped her rage. So I stopped all methylation supps for a week (I had been giving 400mcg daily) and each day she got calmer. Until day seven when her bipolar mood swings and irrational, provoking behaviors started reappearing. So I then re-introduced one drop (67mcg) of methylfolate every other day, along with one sublingual methylB12 (these tablets are soft and really hard to split without pulverizing them - so I give the full dose - best I can do). This seems to keep her steady so that's where we've stayed. When I've moved up to every day, the moodiness and irrationality returns. As I said, this is what works, even if it medically seems improbable. As for a general assumption that one mutation is inconsequential, I think that's mis-guided. If this is your only mutation along the methylation cycle, then I suppose having the MTHFR gene running at 50% efficiency might be ok. But if you have a family history of heart disease, stroke, macular degeneration, miscarriage - as my family does, then I think it's worth treating, for personal comfort that I'm doing all I can to protect me and my daughter from these ailments. If she has additional mutations on other genes along the pathway, I don't think it's wise to ignore it. And for whatever reason, treating her makes her - and the rest of the family - much happier. For a penny per drop, it's a bargain.

Sorry Jill - don't mean to derail the thread. Would love for someone to offer a better understanding of dopamine.

My DS did not have elevated D1 or D2 on Cunningham. His CamK was 183. He was a huge ticcer at the height of Pandas days. He now only has mild tics when we get aggressive on lyme and he has trouble detoxing fast enough. (as in 3 weeks of tics 2 yrs ago on tindamax and 5 days of tics last fall when we added a 3rd abx to our combo - tics went away when we immediately removed the 3rd abx). Tyrosine has not caused any tic issues for my son. I don't know if it's a stimulant - never researched it. Once I saw it was a precursor to dopamine, I didn't really care if it was considered stimulating. It helps his focus significantly. We've been using it for about a year. In December, I also added phosphatidyl serine twice daily. That is considered a stimulant. Phosphatidyl serine and Omega 3 are two of the main ingredients in Vyvanse - an ADHD drug. It too has helped, tho not to the degree the tryosine has. We're going into our second month of using it and it helped enough that I was willing to order my second bottle of 60 pills. But jury's still out whether it'll be a long term thing. On tyrosine - try to wade thru the link I added to my first post. The doctor makes the point that you can't add tyrosine indefinitely without also adding at least a smaller dose of tryptophan or 5-HTP as a serotonin precursor. The two neurotransmitters need to stay in balance. Here is the followup link to the article, that discusses dosing for an adult: http://www.dr-bob.org/babble/20100122/msgs/935382.html You can print these two out for your doctor and if he has any insights or feedback, please let me know. I'm not at all sure I'm understanding it all correctly. But as you know, when your kid is hurting, trying things and failing is sometimes better than just sitting by watching and doing nothing. Would love to live in a time when doctors could give me answers. But since they can't, I do my best to do no harm but to also try things that might help. There is another resource on depression and tryosine/dopamine here: http://www.thewayup.com/ On the right side of the website is a yellow image of a book. You can download the pdf of the book from the site. it's a bit old - from 1994. So much knowledge has been refined in the past 20 years. I think epigenetics can give more individual guidance now. But the book is an easy read and gives you some helpful background.

Omnicef triggered quite a herx for my son (omnicef+zith). It lasted about 2-3 weeks. The problem is that a herx and a flare can be nearly identical - it's only in hindsight that you can speculate on which it was - and that's usually based on how long it lasted. A herx is different for everyone. What I can tell you is only true for my son. Your daughter may be very different. But for DS, a herx is more lopsided in symptoms. In a flare, we get OCD, tics, anxiety etc. In a herx, we get these plus anger, lightening quick temper, body/muscle pain, whining, headaches - more physical complaints, more PMS behaviors and rapid mood flashes - this plus the normal "flare" behaviors. But unfortunately, I haven't found any magic solution to make it go away. Detox helps. Motrin helps. Letting them stay home or come home early helps a little. Low stress, fewer things on our social calendars and "to do" lists, lighter homework or homework spread out over smaller sessions - all help a little. My own experience is you try riding it out for 2 weeks. If things are still bad and not decreasing, talk to the doctor about reducing the dose on the omnicef temporarily. Then building back up once things have settled a bit. It's a marathon.

Oh how I'd love someone to explain this to me too. I have often heard people say that their Cunningham D1 and D2 numbers were high and therefore the problem was too much dopamine. Yet is it that there's too much dopamine or that the receptors are blocked, therefore the dopamine backs up (like a clogged sink)and not enough dopamine gets through the pathways... that theory makes more sense to me. Because like your DD, my DS shows symptoms of not enough dopamine. Our kids share the attention issue/ brain fog stuff. Tics are often from too little dopamine. Parkinson's is too little dopamine. Anxiety and depression is from too little dopamine. Lack of motivation and behaviors that are reward-seeking like addiction are from too little dopamine. At least, that's the impression I have. But it gets quite confusing and for all I know, I have it all wrong. But I do know that my son does better focus-wise with a tryosine supplement and tyrosine is a precursor to dopamine. So for him, adding dopamine has been helpful. But it may also be a problem of the receptors being blocked. So I'm not at all certain. I know one of the genes that plays a role in dopamine synthesis is MAO. Anti-depressents are MAOI inhibitors. Like SSRIs, they cause more of the target neurotransmitter to pool up in between the neuron gaps, giving an additional shot of the good stuff to the uptake neuron. Jill - here's a geek paper on depression and tyrosine if you want to wade through it, but I'm not sure it will help answer your (very good) question. http://www.neuroassist.com/01%20Depression%20Johns%20Hopkins%20with%20cover.pdf

Yes, my DD is single mutation (heterozygous) for C677T and treating her with a small amount of methylfolate and methylB12 every other day has made an enormous difference. Sounds like it shouldn't. I mean, a miniscule amount (approx 67 mcg) every other day? Doesn't make medical sense to me. But all I can report is that for the first time in her 8 years of life, we sailed through a January without any metldowns, manic episodes, depression or rapid bipolar cycling. Not a blip. We've treated for Pandas, for possible lyme - these things helped. But every January, she still turned into a Tazmanian Devil, until this year, when she was happily normal. The only thing that has changed in the past year is adding methylfolate + methylB12 - at the proper dose for her. We even dropped back on antibiotics, pulsing every other day. And she stayed stable. She got sick with the flu - and she stayed stable. So I understand why most docs say you don't have to treat. I have no medical explanation. Maybe some people can get by without treating it. I certainly managed thru most of my life (she gets the mutation from me). But for my daughter, with her restrictive diet, with her tendency toward anxiety and depression, it made a world of difference. Lilly - just about any doctor can order this test for you - I believe Dr T and Dr J are both familiar. But best to work with a doctor who treats this on a regular basis if possible. You can find a referral here: http://www.mthfrsupport.com/find-a-practitioner.html

We never used Cipro. I just did a very quick google and found this http://www.wellness.com/news/7962/lyme-disease-testing-not-the-way-to-diagnosis/health-and-wellness-news which says cipro is not good for lyme. However, I should be clear that we didn't use bactrim for lyme. We used it for suspected bartonella. You may want to pop over to the lyme forum and ask for additional opinions and on LLMD recommendations. In the meantime, I'd probably try to see if she'd consider zith+rifampin or zith+omnicef. Not because they're "the best" but because they're probably most familiar to her and she may be more comfortable with those. (Omnicef crosses the BBB - read up on detox and anti-inflammatory ideas. herxing sucks).

You can order from here https://www.23andme.com/ for $99 - no doctor's signature required. Test results are now taking 6-8 weeks to get back because they've been overwhelmed with orders since lowering their price. But be aware - this company will only give you raw data that is difficult to interpret. It will not come with a doctor's guidance on what to do with the results. For anyone not inclined to do heavy technical work, you can head over to the facebook page called MTHFR Support and the moderator will interpret your results for you for $50 and give you a phone consult. There are a few practitioners (chiropractor, nutritionist and physical therapist) who also do phone consults to guide you, but I don't know what they charge or how satisfied people are with them. I don't have any direct experience with any of them.

Sorry - B9 is folate. I meant to write "You're best bet is to use blood work to track changes in his levels of folate, B12, homocysteine et al." On the niacin - in our school system, no child is allowed to carry medication. All medication must be dispensed by the nurse and with a doctor's note/signed form. If a child is caught with a pill, authorities might be called. As pr40 says, methylfolate and methylB12 need to be taken together. On the bright side, you know the methylB12 got absorbed!

We've been on many combos - generally you want at least one intracellular and one extracellular abx. When we first started with our LLMD, my son was on augmentin + zith (which was doing nothing) and he didn't want to change too much at once (or you don't know what's responsible for any change you see). So he added bactrim (for suspected bartonella). Saw nice improvement that first month. We stayed on that for 4 months. Then we dropped augmentin and a few weeks later added omincef (so zith+bactrim+omnicef). Holy cow - what a herx. Most recently, we've been on a zith+rifampin combo that's worked very well. You're probably going to want to keep zith on board for the intracellular piece even if zith hasn't been your "wow" abx. Rifampin, bactrim and omnicef were the additions that made the most difference for my son. But if you feel Lyme and/or coinfections is part of your picture, you may want to consider adding an LLMD to the team. Love dr L but she isn't going to have the experience for Lyme and co. (I assume you've done a T&A?)

The sudden onset of multiple symptoms certainly makes Pans worth looking into. You didn't mention what may have been the trigger. Was your son sick within a month or so of onset? I ask because tick bites can also cause sudden onset of Pans and October is a high risk for infection for Lyme. With the fall leaves, it's very easy to attract a tick and never know you've been bitten. So in addition to testing for strep, you may want to consider testing for lyme or bartonella (also carried by ticks). Your doctor will probably order a standard Western Blot titer test that looks for certain antibodies for Lyme. If it shows any response, it merits additional testing by someone who treats Lyme on a regular basis. The Western Blot has many shortcomings that I won't get into, but put it out there fyi. There is also a test for bartonella antibodies. Another common trigger for Pans is mycoplasma - a bacteria known for causing walking pneumonia. So yes, treating with the right antibiotic for the right infection(s) for the right amount of time (generally much longer than a typical 10 day course) is the first step. None of the other treatments you mention will be very effective if you have a chronic infection. As for Plasmapheresis (known on the forum as Pex - short for plasma exchange) is mostly done by one Pandas doctor out of Georgetown University. Many of our kids have had it done and while it's been helpful, it isn't a cure. High Dose IVIG (1.5-2 grams per kilogram of weight) is done by several of the Pandas doctors. Some advocate doing one treatment, one follows a protocol of multiple HD IVIGs every 8 weeks. Insurance coverage tends to drive which path you can follow. For some, IVIG is very effective. For some, it isn't. But I don't think it's a "cure". Rather, for those it helps, it helps by making the body strong enough to get on with the business of recovery. Most find that a subsequent infection can derail the recovery process. So IVIG isn't "curing" the body's autoimmune response. Not to say you shouldn't consider it. But have realistic expectations about the results. I too once believed aggressive was better. I now feel there are less aggressive but equally effective options for those who are leary of Pex or IVIG or who don't have the financial resources/insurance coverage to do it. So make a decision in light of your son's past history of illnesses, your doctor's input, your resources and your medical beliefs. But don't feel a pressure that you must be aggressive and invasive as the only way to be successful. There is no "right" way to tackle this. Telling us the general area of the country you're in and your personal preferences on treatment (e.g. assault on Baghdad vs. one step at a time) and we can suggest doctors who are Pans friendly.

When you say "folate" - what does it say on the label? You need to be using a methylated form of folate when you have an MTHFR mutation because your body can't take regular folate (aka folic acid) and methylate it into methylfolate on its own. So we take a form that's already been methytlated/converted for us. Here's an article that tries to explain the differences - tho no matter how many times I read it, it still confuses me http://mthfr.net/l-methylfolate-methylfolate-5-mthf/2012/04/05/ What i take away from it is that the supplement you take needs to say one of the following things on the label: L-5-MTHF = L-5-Methyltetrahydrofolate = 6(S)-L-MTHF = 6(S)-L-Methyltetrahydrofolate Good forms which are well absorbed L-Methylfolate Calcium = Metafolin = Levomefolic Acid Good forms which are all well absorbed D-5-MTHF = D-5-Methyltetrahydrofolate = 6®-L-MTHF = 6®-L-Methyltetrahydrofolate Avoid these So, assuming your supplement is on the "good" list, then I'd probably start out at 200mcg of methylfolate for a 125lb person and at least the full 500mcg of methylB12 dissolved under the tongue = possibly 1000mcg. MethylB12 is reportedly very poorly absorbed so taking too much is very hard to do. You may end up at 2000mcg or even B12 shots, depending on whether you have a doctor involved in helping you and how much experience he/she has with treating methylation. I'd stay on 200mcg methylfolate and 500-1000mcg methylB12 for a few weeks. If things seem stable, then move up to 400mcg of methylfolate. There's no set agreement on what your target should be, but since he's homozygous, he'll probably need a dose on the higher end. I've read that adults probably need @800 mcg but some need higher. You may find yourself going up to 1-2 or even 5 mg. But I'd get there very slowly. Give yourself several months to get to your target. Re-energizing the methylation cycle is like spring cleaning. The body will start cleaning out garbage as you get the cycle moving better. You're best bet is to use blood work to track changes in his levels of folate, B9, homocysteine et al. You can browse thru mthfr.net for suggested lab work or post this question on the MTHFR Support FB page - there are professionals on there who treat this stuff for a living and know way more about it. The one thing I learned the hard way is to start low and take your time. You can also have a little niacinamide on hand if you realize you may have gone too high too quickly and see rages or mood swings. The niacinamide mops up extra methyl groups and helps the person calm back down. Read the case study on mthfr.net for details.

This is something I wrote to try to explain how one piece of methylation (and there are many!) plays a role in mental health. Treating this one piece drastically improved my daughter's bipolar-like behaviors. http://www.easytolovebut.com/?s=holy+mthfr&submit=Search It is complicated and few doctors know how to treat. Dr T does do some testing but since he's not my doctor, I'll defer to his patients to comment on their experiences. You can do the C3d test or ask for his thoughts on it. It isn't an "aha" test that will tell you what to treat. But we've found it helpful as a tracking measurement, to confirm that treating with antibiotics was appropriate over a long period of time. If you read the article and want to know more, I can share some links to some videos that are helpful. But they're long and make your head spin. I think many parents are more ready for it once they've gotten over the initial shock of Pandas and feel like they have a handle on the current infection and a good treatment/support plan. Then, as things settle, your mind has a little more room for methylation. But I tried to make the article a place where you could see why it was worth looking into. Sheila - the owner of this forum - is also working on making additional methylation articles available shortly.

You can buy the capsules on amazon - at least in the US. http://www.amazon.com/s/ref=nb_sb_ss_i_2_12?url=search-alias%3Daps&field-keywords=gel%20capsules%2000 Check on the sizes. My kids can swallow size 0 and 00. Amazon also sells pill fillers - http://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps&field-keywords=gel+capsules+filler&rh=i%3Aaps%2Ck%3Agel+capsules+filler As for whether you can put in dry power or mix it - check with a pharmacist. I think turning it into a liquid will make it leak. Also, once Augmentin is liquified, it expires in 10 days. But I don't know about what happens effectiveness-wise if you take it as a powder or how a powder would equate to a liquid in terms of what a proper dose would be. But I'm confused. In the US, augmentin comes in pill form. Is your dose not available in a pill?