LNN

I know that on the Western Blot (and Igenex) Band 41 indicates an antibody response to a bacteria that has a flagella - a tail, like a sperm. Borreliosis has a tail, as does H Pylori (the bacteria that causes ulcers). But I'm having trouble finding a list of other bacteria that might show up as a positive 41 band. Anyone have any info or google search ideas? (also posting this on the lyme board)

I think the best role they can play is raising awareness and early detection. So many parents have never heard of Pandas. If nurses can play a role in making information available, that would be significant.

I truly was picturing blobs of paint when I wrote. But yes, s**t is a better image!

At this point, if you feel you can hold on for another week, I would observe - but also document. If you're comfortable with words, write your observations down. Another useful tool is to pick the top 5 symptoms and every day, give those 5 symptoms a rating (10 being the worst, 1 being good). So if rages are bad, they'd get a 7 for the day. If no rages that day, a 0. You can put this into excel and then make a graph of symptoms over time. On the chart, you can type or write in the treatment or illness that was going on at the time. This helps show trends, effectiveness etc. As for whether to pursue other tests, opinions...you'll get a variety of opinions here. We all have so many different experiences. No one size fits all answers. For now, I'd educate myself on other triggers (lyme, yeast, celiacs, others?) and their treatments. One or two will probably feel like a better fit than the others. Look into those treatments and know your options. It's tempting to look for only one answer. You just want the nightmare to end - NOW. Unfortunately, sometimes you have to peel away and give different treatments time to play out. You don't wait indefinitely, but I'd use this evaluation period as a time to plan ahead without doing anything different treatment wise. I've thought about SF Mom's comment that to do it all over again, she'd have started with a Lyme Literate Doctor (LLMD). We started with Pandas doctors who helped, and then also sought help from an LLMD, who helped even more. I wondered if we could've saved ourselves a lot of time and money by starting there. But my daughter is also showing signs of "something" and our LLMD is just as baffled by her as the Pandas doctors were baffled by my son when he didn't respond as well to treatments as they expected. So I don't know that any one type of doctor has all the answers. I think they each contribute to helping peel away layers of complex illnesses. That they fail to sometimes get you to the finish line just means they weren't on the last leg of the relay team. It's a new and I'm sure frustrating way to look at doctors and diseases. I remember thinking Pandas alone was way too confusing and surreal. Now we tell you to consider other odd diseases too? So take it slow. Be as methodical as you can. Digest our advice and consider our opinions. But don't be married to any one diagnosis or any single treatment. Use your own gut and your son's reactions to chart the course that's best for you. And please keep us posted. We all learn (and argue and cry) together.

Not sure how comfortable you are sharing info with this mom, but one thing I've done with people who start to give you "that look" like three heads are growing out of your ears, is to say "my son has an autoimmune disease that's similar to rheumatic fever. In RF, if the child is exposed to strep, his body mistakenly attacks his own heart". I wait for their eyes to grow large and then I proceed "my son's disease is similar, except his body attacks his own brain. So you can understand how we try to keep him away from kids who might be sick." They usually nod a lot and then get sympathetic. I don't go into neuropsych explanations or try to explain how the behaviors drain the whole family. I just leave them with an image of heart and brain damage. It isn't "accurate" and doesn't do much to expand understanding, but it does get outsiders to take the disease seriously and puts more responsibility on them to do their part to protect my son.

Agreed. Sometimes the lyme docs use labs that accept insurance, sometimes they're willing to consider a clinical picture and do a trial treatment first, then test, etc. As you said, you're leaning this way anyway. Although most LLMDs don't accept insurance, they will usually give you the documentation to submit your own claim. Our visits have been covered about 50%. While they are no more infallible than Pandas docs or DANs, they do seem to have experience in the ugly bacterial and viral stuff. Good luck!

There are three web sites you can show your husband re: Pandas: www.webpediatrics.com www.pandasnetwork.org www.pandasresourcenetwork.org All three contain helpful information explaining the disease. The webpediatrics site is the site of one of the doctors who aggressively treats Pandas and has case studies that illustrate how the disease effects kids. On the lyme forum, there's a section at the top for "helpful threads" similar to the one on this forum that Peglem mentions, tho it's not as robust. These are both hard diseases to get your head around. Give people time to process. The best thing you can do is proceed with treatment. Often, the proof is in the pudding and people find it easier to believe you if they see a positive response to treatments.

Handwriting decline (dysgraphia) is one of the secondary symptoms listed for Pandas. You can see examples at www.webpediatrics.com Be sure to save samples and date them. After a long struggle, we finally got my son a 504 plan (whole other post). But every year, we have to try to explain the disease to a whole new set of teachers who've never seen anything like it. In the past, they've nodded, empathized, but never really grasped what I was saying. Most of the meeting was spent educating instead of planning. This year, I started off showing five writing samples from the past 12 months, at various stages of health, various stages of treatment. Within the first 5 minutes, the whole room was on board. I no longer needed to convince them, explain how Pandas impacted cognitive skills. It was something they could grasp, see, and work with. We then spent the rest of the meeting talking about moving forward, not rehashing history. It was amazing. I'm so glad to hear you're seeing improvements!

Have you worked on cognitive behavior therapy (CBT) with him before? It might help to start a dialogue with him, which can often break open the dam. Everyone here knows how valuable it is to be able to share your feelings You don't mention any specifics, so it's hard to suggest ideas. If it's more that you're frustrated with separation anxiety issues, then maybe ERP techniques could work. Name the feeling (e.g. the worry guy). Identify the need or the anxious thought (catch the worry guy in the act). Practice small steps that are only a 1 or 2 on the fear thermometer (I will sit on a different couch than you for 1 min, building up to I will leave the room for 1 min etc) in small baby steps. Sometimes even the simple act of practicing the techniques can bring a sense of control and relief. Do you know what's going on inside? Will he discuss it with you?

Good idea. I think sometimes when I learn about things, I immediately think to share it with those I know on the forums I visit but forget that there are others on Latitudes that could also benefit. LSS- thanks for sharing. What really caught my eye was that they mention a transient eye tic so many years prior and yet the way I read it, they don't suggest that lyme was the cause all the way back then. Some of us have talked before about how our kids showed "signs" in toddlerhood but nothing full blown enough to pursue at the time (particularly eye blinking). I've tried to create a timeline in my head for what happened to my son. He had the eye blinking for a few days as a toddler. Episodic behaviors we didn't understand but were like a light switch - they were so "sudden". Then he had a tick bite. A few months later, strep and full blown Pandas. So did he have lyme all along? Not if I go back to the eye blinking and odd episodes (not obviously linked to infections) in toddlerhood. Did he not have Pandas? I don't think that's right either. He was so clearly effected by strep episodes. I don't know that I'll ever know. I can only speculate that he had an immune system that started mis-firing early on. It learned bad behaviors. Then subsequent infections became all the harder for his system to handle correctly or effectively. By the time we were on the crazy road to "controversial" treatments and labels, it was all muddy. Maybe I'm reading too much into this article, but that's what I took away from this boy's experience too. He may have gotten a disease (in his case, lyme) that was a tipping point, but there were earlier things that may have pre-disposed him to manifest the disease in tic form, due to early life things the immune system incorrectly learned. My younger daughter is now showing symptoms of something that are way too familiar. She's been on our radar for 2 years, but we can't find any smoking gun. My fear is that the next biggie infection - whether it be a tick bite, a mosquito bite, strep, myco, whatever - will be her tipping point. And yet, how do you treat her before that happens, when you don't know what exactly is wrong. You just see storm clouds, but no rain. Sorry - a little off topic.

Both blood and stool tests came back negative for yeast. DD (not DS that I mentioned in my earlier post) has constipation and GERD. So until we figure out what's going on (endoscope was also "all clear" except for minor upper GI inflammation) we give a pepcid at night and mirolax mixed in with chocolate milk in the morning. It's not idea. Feels like we're only treating symptoms (trouble getting food into her and getting it back out) and not the cause. But it keeps her comfortable. The poop test was reassuring in that everything looks good - no parasites, no H Pylori, vitamin and enzyme levels in good range. So what little food she takes in gets put to good use. It was discouraging in that it didn't give us any leads. The only thing that needed improvement was her level of good flora. Prior to the test, she was taking Culturelle and only DS was taking the Theralac. So we've switched her to the Theralac 5 days a week and Theralac truFlora 2 days a week (did two weeks steady on this and now 2 days prophylactically as an anti-yeast measure). I don't know that you need a special doctor to get the test, but I don't know that "mainstream" pediatricians would buy into the idea or not. If you want more info, PM me and I'll get the name of the lab our doctor used. You could contact them for specific questions, any doctors they do business with in your area, etc. One last thing - life is much much easier now that both kids swallow pills. Could not disguise probiotic powder well enough, especially if bedtime doses were a goal. DD6 learned to swallow tic tacs first (no harm if spit into the sink and got to eat some as a reward if she managed to swallow one, and far cheaper per pill than probiotics). Then we graduated to probiotics, now she can swallow any pill.

So well said. It's like being presented with a blob of brown paint. Was it always brown, or was it once white, then an infection added some red, which made pink. Then another infection added yellow and now you have a weird orange...by the time you find a doctor who can subtract colors, it can take a while to unravel how you got to brown. "Doctor, I think my son has Yellow disease" "Impossible. Your son is brown. People with yellow disease look yellow, not brown. He does not present with classic Yellow disease symptoms. Therefore, he cannot have Yellow disease." So you find a doctor who can remove color and he takes away your son's Yellow disease. But your son is still not white. So what's going on. Well, what's going on is that you may still need to treat Red disease. Only once you eradicate all the colors do you get your healthy child back. As for your son, I haven't been faced with teens yet. But I can only suggest you do what you can to put yourself on the same side as him. The thing they tell you in Taking back to OCD is to make sure everyone accepts their roles. A teen can't fight OCD if it's being imposed on him. It's not the parent's job to fight the OCD, it's the child's. So he has to own it, and you have to become his coach. I can't imagine how hard that must be, but I think if you can take any steps toward that, it might help. Thanks for this post!

My understanding is that yeast does not interfere with abx, but yes, with behaviors (as well as nutrition as it would be competing with good flora that aids digestion and absorption) My son, who is on multiple abx, has never had many gut problems. No signs of yeast. No loose stools. Our doctor has said that one Theralac probiotic taken at bedtime is enough for him (30Bill CFU). The doctor prefers bedtime (2 hrs away from abx) because the stomach acid is lowest then and the intestines move less, so the probiotics have the best chance to sneak past the stomach and hang out in the intestines without digestion and gravity working against them. You can also test for gut health. We have done a "poop test" on my daughter that looked at her gut flora and gave an indication of whether there was sufficient good stuff and if there was a high level of candida or not. But I think the right answer for you depends on what you see in your own house. If you see signs that the plumbing isn't working right, then maybe experiment with higher doses or combinations of different probiotics. Or perhaps consider testing. We have done both blood tests and stool tests for yeast.

No Pandas or OCD for me. But my side of the family has history of mitral valve prolapse (no dx of SC or RF but not much money to run to doctors either, so who knows). DH and his brother have OCD, sub-clinical. But no history of physical ailments.

Thanks Vickie!

No coprolalia, but lots of echolalia.

Disrespect - to show contempt for, insult, offend I have no problem with anyone who wants to question or debate facts. It is extremely healthy. However, I doubt you would remain silent if someone were to describe your personal story as a "claim". I have no qualms with anyone who wants to question lyme testing, treatment or wants to express an opinion different than my own. Sometimes we learn and are able to change our own thinking because of new information. Other times, I may just move on to another topic on the forum. But I will continue to speak up, as you do, when I feel a line has been crossed and an opinion is worded in a way that shows disregard for (not disagreement with) the thoughts and experiences of others. You've been involved with several robust discussions and yet I doubt you would describe your posts as an attempt to bully someone off the forum. This is not something I want to have drag on. No one benefits. I only repeat my request that disagreements be worded in ways that are not disrespectful.

I am glad to know you were able to get treatment from well respected Pandas doctors. However, many of us have patient/doctor relationships with these same doctors as well as some very respected lyme doctors. We have shared our lyme experiences with these doctors and we learn together through collaboration and yes, trial and error. Most of us have spent endless hours researching and trying to educate ourselves on Pandas, lyme and autoimmunity. We do not consider ourselves uneducated on these topics. We have much still to learn and sometimes we find ourselves altering our ideas as we learn and experience new things. And while you "do live with the disease", so do we. I resent the implication that you alone can understand Pandas because you have it and we don't. Do you know what your parents went through? Do you know what any of us or any of our children have gone through? And there are parents on the forums who do have Pandas themselves. Please don't dismiss us and our collective experience because we have lived the disease through different eyes. Our lives have been just as derailed. In fact, my son recalls far less of the traumatic details than I do. Some images will stay with me for life, long after he's forgotten them. We are all here trying to spare our own and other children from unnecessary pain. Not just you. Most of us have spent thousands on doctors unable to help, tests or treatments that failed to end the quest for good health. We are sophisticated enough to "vet" our labs, question doctors and results, and verify any information learned on a forum through independent research and investigation. There is no magic bullet, no holy grail. Igenex is not fool-proof any more than any other lab. It is an indicator. Lyme, like Pandas, remains a clinical diagnosis and often it is only after a positive response to a particular treatment that a diagnosis can be confirmed. You are certainly in your rights to question Igenex or any other test. But if you rely solely on wikipedia for your Pandas information, you will not understand a very real disease. If you chose to rely on the CDC for your lyme education, you will likewise be less than informed. I am by no means a lyme or Pandas expert. I readily admit this (as evidenced by my incorrect recollection of which bands were omitted by CDC). But your lyme statements show an incomplete understanding of the disease and of the tests, yet your statements are very authoritative. You do not have to herx to prove you have lyme any more than you have to have scarlet fever to have strep (it is a similar physical reaction). Each is entitled to his own opinion, but I'm not sure why you're positing on the lyme forum if you have such negative feelings for the topic and the tests being discussed. And finally, mine is not a "claim" that my child has experienced a miraculous return to health. You have no idea how sick he was, what my struggle has been or anything else about me. I would appreciate it if you would refrain from pejorative quotation marks on words which convey my personal experiences. You do not have to agree with anything on this forum. Respectful disagreement and debate is healthy. But please do not forget the respectful part.

My son was negative on CDC. However, as Tpotter mentioned - the CDC test deliberately omits several antibody bands that are highly specific to B. Burgdorferi - Bands 34 and 39 I believe. The CDC itself states that their criteria is for reporting purposes only, and is not for clinical diagnosis. When a vaccine was in development, it was decided that bands 34 and 39 had to be omitted. Otherwise, everyone who got the vaccine and developed antibodies to 34 and 39 would test "positive' for lyme when they didn't have it. The vaccine tanked, but the CDC has never updated its guidelines. Yet the CDC has acknowledged that these are the most telling of all bands. Igenex tests for these bands. CDC Western blots do not. That is why you can test negative with Quest and positive with Igenex. They are testing for different markers. Again, I highly recommend Cure Unknown if you want to understand the history, the controversy and the science behind it. As TPotter also said, all I know is that Pandas treatments only brought my son so far. Since starting a lyme protocol of different antibiotics, his recovery has been nothing short of miraculous - a sentiment shared by my son's teachers, doctors and family. So if it works, I don't care what you call it. I'm just happy to have my son back. As a recovering Pandas child, I'm sure you can appreciate that "proof is in the pudding" sentiment, as I'm sure you yourself encountered much skepticism and medical prejudice on your road to recovery.

Igenex does not find lyme in everyone. It found it in my son, it did not find it in my daughter. A subsequent Igenex FISH test was also negative for my daughter. As for the CDC and the politics of lyme testing, I highly recommend you read "Cure Unknown" by Pamela Weintraub. It goes into great detail about testing. There are also links under the "helpful threads" section at the top of the lyme forum that may explain things far better than a post from anyone. Just like ASO/Anti-BNase B tests - these tests look for antibodies to an antigen, not for the antigen itself. Any test that looks for clues of a needle in the haystack rather than the needle itself will be open for debate. There is not yet any test for either disease that is a "smoking gun." My son (with lyme/Bartonella) had CamK II of 183. Two of his four other markers were significantly elevated (don't have results nearby). Dr Cunningham and I spoke about his results and she felt his results were compelling for Pandas, as did two Pandas specialists. We further have direct correlation with diagnosed strep. So no question Pandas was at play. However, we live in Connecticut, have known tick bites and have seen failure to stay in remission with plasmapheresis or HD IVIG. He had some symptoms that are not commonly listed for Pandas yet were commonly known by several Pandas families (the ones now on this lyme forum) such as muscle/joint pain, brain fog and unexplained fevers. He had both choriform movements (diagnosed by a Pandas neurologist, not me) and myoclonic tics which are related to tick-borne illness, not Pandas. I do not understand why people insist that a child can only have Pandas or lyme and not both. If someone has cancer does it mean they can't get bitten by an infected tick? There is a hostility against the Pandas/lyme combo that I don't understand. Clearly there are plenty - the majority I would think - who have only one or the other. But I just can't get my head around why the two are seen as mutually exclusive.

At the risk of fur flying, have you done any testing for things other than strep? Can you articulate your concerns about steroids? Does the ibuprofen make a noticeable difference? there are supplements that can help the liver (milk thistle? charcoal, others?) Is DS better now? Has he been re-checked to make sure infection is cleared? My heart breaks for you guys. Is she still going to school?

I stumbled across this and thought it could be useful...I haven't tried it, but for whatever it's worth... IEP phone app 'The Parent Educational Advocacy Training Center (PEATC) is pleased to announce Version 2 of the IEP Checklist iPhone app. The IEP is an Individualized Education Program designed to support the educational needs of school aged students with disabilities. The IEP Checklist App helps parents of students with special needs become better-informed advocates by making IEP information easier to access. Version 2 has active links to the relevant language in the federal regulations; allows users to record the IEP meeting or record notes; and has the capacity to print out notes and click on a checklist as requested items are discussed.

KMom - so very happy for your whole family!!!! Because I owe Elizabeth a thanks for giving me that extra lift when I was at my lowest just before our lyme/bartonella dx, I'll post our own positive update (but will bury it in this post lest I jinx things). We started lyme treatment in October and saw very positive results almost immediately. But I was worried about strep season and how the winter would treat us. So far, all the pills he's taking seem to have protected him from everything but the mildest of colds. At every follow-up visit, the LLMD would ask us to rate symptoms and one spot asked "what percent are you at (how close to 100%). I told him I can't answer, because DS got sick in kindergarten and is now in 3rd grade, so I have no idea what 100% looks like, and just when I think we might be there, he makes another leap and I realize it might still get even better. Today, I picked up DS at school and he told me his teacher wanted to speak to me. I gave him the hairy eyeball and he said "No, it's good". She showed me a writing sample he did today that blew her away, it was so dramatically better than what he could do in Sept. It was right on target for his grade level. She said he's had an awesome week. He was also Top Reader for the month of December, meaning he read the most minutes outside of school (1,315 - which is almost 22 hrs). In August, he couldn't read one sentence without losing his place, unable to decode words, zero fluency, zero comprehension, subsequent meltdown. It's like watching him wake up after a three year coma. Like everyone else, you say these things to give encouragement (and yes, to brag) but then you wait for the other shoe to drop. We also know there's a cyst busting period ahead of us, so I'm not taking this for granted. It could slip for awhile again (and my daughter is having her own issues - ugh). But to see the look in his teacher's eye - to know that she now sees what I've been telling her, that she believes - the two of us got teary eyed (much to my son's embarassment). It's like the scene in Polar Express where the Conductor tells the boy that some things we see are not real and some of the realest things cannot be seen. We know our kids are in there. It's incredible when our faith in them finally pays off and the rest of the world can finally see it too. Kmom - didn't mean to hijack your post. But thanks for giving me an excuse to join in. I hope everything went well today!

While the "answer" for us was medical (correct treatment made the add/adhd go away), as a coping tool during all those endless months, we implemented a reward system. His teacher would give him a tally mark on a small paper taped to his desk every time she caught him "on task". Never any punishment for when his mind wandered (other than having to complete important assignments at home). When he earned enough tally points, he could "shop" from a menu of rewards we gave at home. Earn 10 points - he could "buy" a half hour of staying up late, 20 points = watching mom do an embarrassing dance in public, 50=ice skating. Some menu items cost money, many cost nothing. At his worst, no amount of rewards could help. But when he was in better spots, it motivated him. It also helped make the teacher part of the team. It's not a solution, but it might help as a coping mechanism.

Antibiotic shown to relieve common bowel disorder Abx helps IBS "New research found two weeks of treatment with an antibiotic relieves symptoms for some sufferers of irritable bowel syndrome, a poorly understood and painful condition that especially afflicts younger women.... Thought this was interesting...wonder how many other common ailments are actually misunderstood bacterial infections.