LNN

I am so excited for you! You have fought so hard and advocated for yourself in a way that continues to amaze and inspire me. I hope you start to see improvements quickly! xoxo Laura

This hasn't been my experience. We have great success with CBT (cognitive behavior therapy) and ERP (exposure/ritual prevention) and some ADHD techniques. There is a medical cause, and symptoms can remit with medical interventions. But many parents on the board have been able to dial back the severity/intensity of behaviors using behavioral tools. We used to have terrible issues with rages. Using visualization techniques, relaxation steps, and making my son the owner/boss of his feelings, we were able to reduce the severity dramatically. By earning tallies in school for paying attention, and letting him "buy" rewards with those points, we lessened his ADHD tendencies (and also had a quantifiable way of measuring bad weeks vs. good weeks that the teacher could see too). I don't think you can make it go away with just tools - you need medical too. But I do think tools help bring these back into a manageable level much quicker. I agree that you can't reason with someone in the middle of a melt-down. But you can lay a foundation before and after so that each episode gets more manageable. We fought hard for a 504. They are not always easy to get. Our 504 allows additional time for homework, allows DS to leave the room when he needs a mental break (would get sent to the office to deliver a "note" which was nothing more than a folded blank piece of paper), have a water bottle on his desk, and is able to take timed state-wide tests in an untimed environment. It also allows us to check in with the school more often and not get brushed off by teachers or principals. Not everyone you come across will want to bend over to help your child. A 504 gives you rights that you may one day really appreciate.

Elevated ANA is usually associated with lupus. But you can have other autoimmune diseases (e.g. diabetes) and have normal ANA levels. Also, elevated ANA is not slam dunk lupus. Other things can cause elevation, but lupus is what you come across most when googling ANA.

Wow, seems we've been on this road together for years. You were one of the moms who helped me find this forum. Your comments today just really resonated with me. Last fall, I came as close to the brink of a genuine nervous breakdown as I ever hope to come. People were seriously telling me to get help. After the post-IVIG summer from h**l, after finally begrudgingly doing the treatment I always wanted to avoid, DS didn't follow the script and didn't get well. I was totally defeated. Out of desperation, we did an Igenex test, even tho his standard western blot had been completely negative. It came back indeterminate on the bands that the standard western blot doesn't test for (31, 34) plus a few others. I lost it. Locked myself in the bathroom and cried like a blithering idiot. My husband had never seen me in such bad shape. He kept saying "tell me what to do to help" and all I wanted to scream was "I'm freaking tired of being the one who has to figure this all out and tell you what to do!! You do it for awhile. I quit!" So I wallowed for a few days. Then we made an appt with an LLMD and started down the rabbit hole into the bizarre world of lyme/bartonella. Happily, it got better from there on out. It hasn't been all sunshine. DS is currently regressing a bit, but he's still in a far better place than he had been. So my advice is to let yourself lose it. You deserve a good cry and to let your guard down. It is exhausting and anyone who pretends otherwise is delusional. You cannot be strong all the time. When my mom died last fall, the best gift my dad gave me was allowing me to hug him while he cried. The man is 87 and I've seen him cry twice in my life. But I will cherish that gift for the rest of my life. So know that it's ok to let your family see you cry, to know that you suffer and need to be supported sometimes. They may consider it a gift. Then, after a good wallow in the mud, go to the Igenex website and order a test kit. The doctor who's helping you with abx will likely be willing to sign the requisition. Also know that Igenex gives a 15% discount if you test more than one family member at the same time. And some insurance carriers will reimburse a decent portion of the expense (Igenex will send you the info you need to submit along with your claim form - they just won't submit for you - you have to deal directly with your carrier). Since some lyme articles say that elevated immune complexes can give you a false negative, you might want to ask your doctor to also order a C3a, C4a and/or C3d immune complex test. Very often, if you have blood tests done by a commercial lab (e.g. Quest or Labcorp), they'll do the Igenex test for you at the same time, without any additional phlebotomy charge. (and elevated C3a and C4a are implicated in lyme) You'll get varying opinions on which tests to order. We went with the basic panel mostly due to money. Since we knew we'd end up with an LLMD if there were any positive or ind. bands, we knew the LLMD might use different labs for co-infections, and in fact, ours uses one that accepts insurance. So our Igenex was more of a way to see if it was even worth looking into. But there are reasons to do other Igenex tests and you may want to post on the lyme board for input. (oh, and don't drive yourself crazy wondering if they have Pandas, lyme, both, which came first...very possible it was a layering thing that just slowly built up - focus on peeling the onion, not chasing your tail trying to figure out how it all happened) Try not to let the expense and fear of four kids having lyme overwhelm you. Like you, we've spent about $$$$$ out of pocket for the past few years (pex, IVIG, abx, travel to distant specialists). Oh - and the augmentin XR + zith combo didn't make a bit of difference for DS (tho it may help some). But a different abx combo treatment has helped me get my kid back. It's been like having him trapped in an avalanche. He's still under the snow, but while pex and augmentin gave him a breathing hole, the lyme protocol has helped us find a hand and uncover his face. Still lots of digging ahead, but no longer the fear that we won't get him back. Two months ago, after lots of digging and expensive tests, like an endoscope, kid #2 was also red-flagged. CamK 178, high anti-lyso, and ind. lyme. But no strep. So she's joined DS on the lyme path and they take their zillion pills together. It makes it hard to answer when acquaintences ask how the kids are doing - you don't dare give an honest answer. But to hear her laugh again - can't put a price tag on that. So hang on. You deserve a good melt-down. But you will find the energy to move forward. Just believe in yourself. Laura

According to this website http://student.ccbcmd.edu/courses/bio141/lecguide/unit5/humoral/5classes/5classes.html, IgM has a half-life of approx. 5 days and IgG half-life of approx 3 weeks. So a high IgM means pretty recent and possibly current. As others have said, the trend, not the numeric value, of the ASO is important - a level that has climbed over weeks or months suggests that the infection was not cleared. According to Wiki (take it for what it's worth), ASO tests have a 20-30% false negative rate. Also, it is my very rudimentary understanding that immune complexes can bind to either antigen or to antibodies that have already bound to antigen. If it's the latter, then antibodies are bound up in complexes and I think you can get a false negative on a test that is looking for antibodies, because the antibodies aren't loose and detectable. But I can't confirm this impression until we see the doctor next week. Bottom line for the believers of infection-triggered neuropsych behaviors - we just know that having our kids on abx can give them a quality of life that they don't have when they go without.

Wilma, The amount of inositol you are giving is extremely low. In research studies, adults were given up to 18 grams (not milligrams), built up gradually over 6 weeks. So they may have started at 1 gram/day, given in 2 doses of 1/2 gram (or 500mg) each. Then after 5 days, gone up to 2.7 grams total, given in 3 doses of 700mg/each. So 125mg is small even for someone starting out. And most people won't see effects until 3-4 weeks of ramping up the dose. My son, at 45 pounds, was taking 5 grams/day when it seemed to start helping (or 5000 mg). To follow up on Chemar's post, even if it's determined that your child has infection-triggered OCD and does start antibiotic therapy, it would still be worthwhile to look into ERP therapy. Done correctly, it can make a big difference and gives coping tools that last a lifetime, even after any infection-based disease is treated.

The best advice I ever got was to cancel the neuropsych eval we had scheduled (and paid a $2000 deposit on) until after we treated Pandas. It felt we'd be evaluating the disease, or the effects of the disease, not the real boy. We decided that if there were residual things after treating Pandas, then we could do the eval. So we canceled the eval, got our money back and never regretted it.

Abx are covered by our insurance, but we have a high annual deductible, so the first half of the year, we pay the insurance negotiated price out of pocket. Once we hit the end of the summer, it gets a lot cheaper. Also realized this week that many kids multi-vitamins contain the same doses as adult vitamins. It's just that they're chewable. Once your child can swallow pills, they can take an adult vitamin. I used to worry about OD'ing them on dosage. But compare labels. They're very similar. Same for detox - LLMD is very big on keeping bowels moving. So we're trying a fiber mix that has pre-biotics and digestive enzymes. Only problem is that it's not really helping DS as much as miralax does - at 1/4 the price. So we're combining the two - half of the fiber scoop and half a cap of miralax. If money were no object, I'd be scooping tons of the fiber mix, but there's that furnace I mentioned...

FYI - Igenex gives a 15% discount if you test more than one family member at the same time. Even if you've already sent in the samples, you can call and they'll give you the discount.

My son had CamK of 183 and we spent 2 years on the Pandas route (IVIG and pex). My daughter just came back with CamK 178 and sky high anti-lyso. We are only pursuing lyme/bartonella for her. IVIG is not even a consideration at this point. By the numbers, she is Pandas more than lyme. The way I look at it is that IVIG alone will not address the lyme. But it's entirely possible that the lyme protocol alone will address both lyme and Pandas and make IVIG unnecessary. In the order of things, it seems to make more sense to treat tick-borne stuff first then see what, if anything, is left. Lyme can elevate CamK and trigger auto-immunity. Here's an article by Dr Cunningham et al that discusses. It addresses carditis, not Pandas, but I can't see how it wouldn't also be true for Pandas. http://jcm.asm.org/cgi/content/full/43/2/850

This is a tough one. On one hand, you want to do what's necessary to get your kids well, but on the other, having money to pay other bills is nice too. Aside from the LLMDs not accepting insurance, there's all those supplements... For us, the LLMD visits are covered at about 50% (80% after they reduce his rate to what they deem it "should" be). For me, the antibiotics aren't a place where we can cut costs. We'll do the "right" abx regardless of cost. The place to be cost conscious is with the supplements. I'm sure I sound like an ogre, but I'm always asking what's practical. I have picky eaters (and two young kids with lyme). So if it's an herb or a powder that isn't going to dissolve well, I pass. I have bottles of stuff sitting in that cabinet that the kids turned their noses up at. So by trial and error, our LLMD and I are developing a line in the sand and we're coming to an understanding that the only supplements that are going to work are the ones I can get into their bodies on a consistent basis and have the biggest bang for the buck. So we spend less and less time talking about "nice to have" supplements or things that adults can force themselves to take and focus on the "must haves". I know this slows down our treatment, but after 3 years of complying with all we've asked (pex, IVIG, pills, doctors, pills and more pills), I have to pick my battles with the kids. They just want to move on and be kids. (and I want to have money for a new furnace). No easy answers. Just lots of company in this arena.

Cigna reimbursed us about 60%

In the first year that my son had Pandas, I had every intention of only using antibiotics when he showed the first signs of being sick. Like you, I didn't want to use them all the time. But whenever he was off of them, he'd regress and each time, it got harder to recover what he'd lost. Now, his case is complicated by the fact that he may have contracted lyme before he got Pandas. So my experience could be very different than yours. The risks of being on long term abx are real. This tends to be a very pro-abx community, but I don't think many of us started out that way. None of us wanted to have our kids contributing to the next MRSA or wrecking their guts and causing all sorts of new problems. But the risks of re-enforcing that autoimmune response with a new exposure is equally real. The goal is to keep the auto-immune response as calm and dormant as possible. I guess the first thing you have to consider is that if your child has Pandas, then they don't have a normal immune system and some of the thinking you've used about abx in the past might no longer apply to your child. As far as managing the risks of long term abx, you can 1) follow a good probiotics regimen and give an anti-yeast probiotics several times a week 2)check for yeast periodically with a blood test and looking for signs of thrush 3)you can do stool testing periodically for both yeast and for a nutritional check and to check on the health of gut flora 4) periodically check liver functions with blood tests My son's been on abx for 2+ years. For us, it was a choice between having a quality of life and not. No one can tell you what the right answer is for you and your daughter except you. I just caution that either decision has risks - you just have to decide which risks are more acceptable.

Dr L doesn't take insurance but does give you the insurance form you need to submit your own claim. We were then reimbursed a portion of our expenses. For example, if a doctor's charge is $400, our insurance co. may tell us that its usual and customary charge is $300. If we've met our annual deductible, they'll reimburse us 80% of the $300, or $240. So we end up paying $160 out of pocket, not $400. But you do have to pay the entire fee up front and get reimbursed from your insurance co. Still, when considering the cost of many of the doctors who don't take insurance (which includes some Pandas and most lyme docs), you should call your insurance co. and ask if a visit to that doctor would be covered. It's often possible that you only end up paying a portion out of pocket.

There are other tests that can indicate ongoing infection - C3d, C3a and C4a immune complexes, and re-checking strep titers. I'm sure there are others I'm not aware of. You say Igenex is negative, but where there any positives or indeterminates or was everything completely negative? When did you check myco p? Saw your other post - yes, other things can elevate CamK, including but not limited to lyme. The anti-neuronal markers are hypothesized to be more specific to an autoimmune response, but the tests are not "proof" that elevations are caused only by auto-immunity to GABHS. Your other option is to try the meds used for TS - sorry - don't recall if you ever have. Dr Cunningham has said that haldol should be a good option for some Pandas kids. Maybe see if you can find some of her publications that discuss this in greater detail?

Whenever my kids have been on omincef (usually for sinus) it's been for 10 days. I think one reason augmentin is widely used here is that it's amoxicillin with jet power- and amox is a broad specturm abx that works on a lot of different bacterias. I think omnicef is a little less general - works really really well on some bacterias and not as well on others. Amox is more of a shotgun - casts a wide net and takes out a lot of stuff. So we lobby for augmentin for the wide spectrum and the extra horsepower of clav. acid. But it's these same properties that make some doctors averse to prescribing it long term. It's a big gun and they don't like to use a big gun every day. they want to save it in case they need it for a bigger infection. Zithro is favored here because it's an intracellular abx that can get at infections that are hiding within host cells (sorry - this is not my area and I will screw it up if I try to explain any better). It's gentler on stomachs and only has to be taken once a day and is a much smaller pill. So Augmentin and Zith are favorites. But it really depends on what infection you're fighting. My DS did reasonably well on augmentin for 18 months. It kept strep away and let him make progress. But since he also had lyme, it wasn't the right abx for that and didn't get us to 100%. So it's not so much a question of what is THE abx, but what are you fighting? If you don't know, then the broader spectrum abx are helpful. But it may require some trial and error. You may also challenge your doctor on this point - only partially treating an infection - say for only 5 days - is actually a greater risk for antibiotic resistance than taking abx for longer. If you expose bacteria to an abx but don't kill them all off, they learn to become resistant to that abx. So IMO, you're actually better/safer doing 3 weeks of something than you are doing just 5 days, provided that you don't skip or miss doses.

Worried dad's explanation is the same understanding I have. That when the body initially detects an antigen but has yet to identify what it is, the body mounts a general defense, sending out many possible antibodies to search and destroy. One antibody has green bullets, one has red bullets, another has blue bullets. Once the body finds the lock and key and matches the right bullet for that antigen (say, green), then the body produces more green bullet antibodies and calls the other colored antibodies back to base (or rather, lets them circulate and die off but does not produce additional blue bullets). This general to specific response may cause strep auto-antibodies to be produced simply from exposure. But once no full fledged response is required, the body should calm down and the circulating antibodies should diminish. There are two more "food for thought" things I want to mention. First, one of the reasons kids are thought to outgrow this, or at least have much milder symptoms as they age, is that the organ that produces T-Cells is the thymus, which is located just behind your breast bone. When you're young, it's a T-Cell mega-machine, churning out antibodies to all sorts of things a young body has never been exposed to. As you hit puberty, the thymus starts to shrink and tho it never completely shuts down, it plays a much smaller role in the body's adult immune system http://en.wikipedia.org/wiki/Thymus So the body is less prone to making renegade antibodies in response to every little sniffle or infection. The second idea to consider - and it is only an idea- held by some in lymeland... some lyme doctors are often asked why some patients with chronic lyme get so sick and others can function fine for years. The theory that's floated around is that some people may carry heavier loads on their immune systems - chronic infections, heavy metals, yeast, poor diet, leaky gut, stress....etc. Then lyme comes along and is the straw that breaks the camel's back. In a healthy person, maybe lyme causes a milder load and the body does a better job of fighting on its own. In a stressed immune system, you reach a point of overload and things start to go awry (and maybe autoimmune). When I was struggling to reconcile Pandas and lyme in my kids, this eventually made sense to me. I can look back to when DS was 3 and had an eye blink tic for a few days around the time he was sick. Then at 4, he had a strange behavior outbust that lasted about 10 days. Then at 5, a tick bite. 4 months later, strep and Pandas. So maybe there were things that were building up until it got to be too much. Maybe his body would've handled strep normally if he hadn't contracted lyme. No way to ever know. But this theory kind of helps me make sense of it. If you can buy into this thinking, then prophylactic abx makes sense because it prevents one more infection from adding fuel to the fire and allows the body to heal from other infections without getting overloaded yet again. Just some thoughts. I don't have any research to support any of this. But it helps me to think of it this way.

Maybe we are the exception and I hope I don't jinx myself, but herxing has not really been an issue for us. If we've had herxing, it's been in a 4 week cycle and it consists of a few days of angry/edginess and an increase in muscle pain. But DS is still miles ahead of where he was pre-lyme treatment. It's nothing like the people in Under Our Skin. For us, it's been mostly goodness and a mild case of days where DS feels a little worse. But really no biggie. I would focus on detox and taking care of yourself. You can also talk to the doc about the timing of your PSATs and maybe build a treatment plan that helps you feel best close to testing time, then spend the summer being more aggressive. I think you have options. You aren't doomed to feel worse before you're allowed to feel better.

So let's tally this up... + Top of your class + top in your district and free National Merit testing + lyme presentation and support of a great teacher + possible interest from geneticist + starting TREATMENT in a week - not just a doctor appt - but Treatment! + adderal that helps with narcolepsy symptoms - maybe not what you wanted but some help - mom not on top of making doctors appts - disappointing b'day not attended by people too blind to see how awesome you are - forced to co-exist with teenage girls (afraid there is no cure for this except the passage of time) Yes, being sixteen is not always sweet. Sometimes it downright stinks. I don't think many of us would go back to that age unless you paid us large sums of money (and even then it would be so we could remember having perky boobs). So 6 pluses, 3 minuses. I think you have much to be proud of. Try not to sweat the lyme treatment. How much worse could you feel? And for my kids, it's made a huge difference in how they feel. Not every day is great, but there are a ton more good days and a lot fewer lousy days. Despite it's forgettable beginning, I think this year could be a great one for you. Have hope and keep us posted!

I stumbled across this link http://www.benbrew.com/lb/lb.html and found it somewhat helpful in that it's one of the few layman's blogs that cites sources for many statements. It also has a pretty decent list of suggested reading at the bottom.

Welcome Lindsay, I'm sure by now you are well-versed in Pandas and have read the helpful threads pinned at the top of the forum. I'm sure you've also read about tick-borne bacteria on the forum and how some have found that lyme and Pandas can look an awful lot alike. I think it's worth pursuing these diagnoses, since the waxing/waning point to this being infection-based. A few things in your post made me think of lyme - the hot flashes, the broken blood vessels in the eye (it may not be a result of the tics but rather a lyme manifestation) and the rashes (which could be impetigo or could be some bacterial toxin). I don't want to discourage you from pursuing Pandas. But you may also want to read up on lyme in addition. The two diseases can be very similar but with lyme, you usually get a much better response from using a combination of antibiotics rather than just one. Best of luck with your doctor's appointment!

Well, I'm glad you guys can see the humor in this bizarre world! Tami gave me an opening on the Pandas forum and I posted the link in what I hope was a helpful way...

These links might help you with the results Explaining Western Blot tests: http://flash.lymenet...TML/022767.html WB for Lyme: http://www.anapsid.org/lyme/wb.html Understanding the WB: http://www.lymenet.d...sts/brenner.htm This link talks about both lyme and bartonella http://www.benbrew.com/lb/lb.html (the author - not a doctor- is pro antiobiotics and not supportive of "naturals" - I mean no disrespect to anyone who feels otherwise. I only post the link because, unlike many blogs, this one has a lot of citations and a good "recommended reading" list at the end. It took me a long time to make room in my head for lyme, even tho we live in CT (where 90% of the deer tics carry lyme). We had such a strong correlation of symptoms to strep that I thought no way could it be anything but Pandas. I have no idea if I'm right, but what I've come to believe is that the tick bite came first, then a few months later, the first strep infection came and put my son's immune system over the edge. I think it might've been a 1-2 punch that made things so bad and also so hard to unravel. When we first got the lyme/bartonella dx, I was crushed. It was just too much. But after starting a different abx combo and a few supplements to support his body, he's doing so much better - not perfect (yet) but this was the breakthrough we'd been praying for. So try to look at it as a positive. It's a good next step... Best of luck! Laura

These original posts are from Sept. 2008...this isn't a current member.

These articles may help Explaining Western Blot tests: http://flash.lymenet...TML/022767.html WB for Lyme: http://www.anapsid.org/lyme/wb.html Understanding the WB: http://www.lymenet.d...sts/brenner.htm