LNN

I saw Burrascano speak at a lyme forum this spring and he discussed this test and hoped it would be available by year's end. He feels it should end the controversy associated with a lyme diagnosis because it will provide direct evidence of the spirochette instead of indirect evidence. It works in a manner similar to a strep throat culture - if the sample grows in the dish, it's strep. Of course, you know that strep cultures aren't definitive either - I suppose you could get a negative culture of anything and still have that disease, but I don't have the science background to speculate. But most physicians "should" accept a picture of a positive culture much more readily than requiring a certain number of positive bands of antibodies. I don't see any requirement that you be off of antibiotics to do this test. It only says you don't have to rely on antibody formation. It says nothing (that I can see) about antibiotic therapy. But you can certainly contact the lab for a definitive answer. Sounds very promising. Hopefully it will be affordable.

Thanks for the thoughts. It does mirror our own experiences in terms of 3-4 months of improvement followed by relapse. We are now addressing KPU and seeing a more self-directed healing. But I'm curious about ART saying something is gone and yet having a relapse anyway. I ask with complete respect for ART - just don't understand it well enough to be able to see how it could say something is gone yet still be at risk for relapse. I do understand how so many variables enter the picture - the health of the ART practitioner, the environment of the testing area, etc. But if so many variables influence the outcome, how can you rely on ART results? Especially if ART says you're healed? Would you still continue to treat for a certain period afterward to prevent relapse or is the chance of relapse just to be expected? I would love to do more research as you recommend. But it's extremely hard to find information aside from Klinghardt Academy. And as much as I've learned from Dr K videos and written summaries from Better Health Guy and survivingmold.com, it's been very hard to find info on detox and metals that's thorough or comprehensive. That takes the discussion from a general FYI sort of level to a practical, here's what you do level. I find forums like lymenet helpful in terms of giving me ideas, but very shallow in terms of exploring that idea. The one thing that has always impressed my about this forum is that so many people give you links that you can sink your teeth into. Do you know of any books, links, or sources of in depth/accurate discussion on these subjects, particularly detox and drainage? My LLMD is integrative and does ART and has been very helpful. But when you only see someone once every two months and symptoms crop up in between visits, it's hard to know what to do other than rely on the suggestions of others in the same boat as you. It gets further complicated when you're dealing with kids, especially ones who would balk at any of the stronger smelling/tasting tinctures. I need to work within their limits, as they're already doing so much of what I ask of them. I would love to learn more but need something beyond forum discussion. Any suggestions?

S&S - Core has magnesium, in a specific proportion to the other minerals in the capsule. So don't want to mess with that. But thanks for the xo's Jodie, I think it's more circulatory or muscular than bone, but will check rather than assume. The stabbing pains are in the inner thigh and groin muscles - soft tissue - and the top of the foot. It's a new complaint, just this week. We're doing 30 chlorella/day from Mercola, which comes out to 10 grams/day. This is partly why I'm not thinking metals and I also haven't seen much in terms of intensity of behaviors, moods, or cognition - other than positive trends upward. His brain is working better than it has in years. (also giving ALA and milk thistle) How do I do lymphatic massage in that area? Ankle massage, ball of foot massage? The one thing I didn't mention is that in addition to Core, we were doing 2mg/day copper supplement. He tested low for copper prior to starting KPU treatment and I know Core can lower copper even further. So the LLMD added the copper for one week before starting Core. We saw improvements from that as well. But about 2 weeks ago, DS started getting nauseous when he took the copper. Threw up on 2 occasions. So I've backed off and now only give 2mg every other or every 3rd day. No more nausea when he takes it. But wanted to toss that in just in case it meant something. As I said, he's complained of odd, "icky" feelings this week. Assumed it was due to his immune system starting to fight things. But I really appreciate your thoughts.

DS is now in week 5 of KPU treatment. So far, very positive results. A few mood issues and intense feelings, but overall no major OMG moments. Even DH feels it's helping and when he's on board, you know it's an obvious improvement. We've been warned that between weeks 3-6, things can get dicey, either as the body dumps metals (which I don't think have been a major issue for us) or as the immune system wakes up and starts fighting things it hasn't been able to fight before. So I was perversely happy when earlier this week DS felt flu-like and didn't want to go to school. (Mean mom made him go). For the past few days, he's been complaining of "bee stings" in his legs and feet (sharp, stabbing pain in a specific part, not a tingling) and at bedtime and in the morning, his ankles and feet hurt to stand on. I know these can be symptoms of a co-infection (or maybe virus?) but can't recall which one. Does anyone have thoughts? Won't change what we're doing for now, just curious.

Family therapy was a life saver for us. While you're in it, it sometimes feels like you're not getting much out of it. But in hindsight, it helped us appreciate where the other guy was coming from and probably prevented a lot of misunderstandings and wedges. You have all been through trauma. It's important to heal properly to minimize scars. I highly recommend it.

So glad to hear that the madness of OCD is losing its grip. You must be so happy to be able to breathe again. I do hope your doctor is right and it's only a matter of months before she's close to the finish line. But even if there are setbacks, now you know what's possible and from here on out, you know you and DD can accomplish anything. Nothing can hold you back now!

Well, she made it through the day. The teacher said she had some quiet moments, but mostly stayed busy. She was cuddly in the evening. This morning, I made sure to give her plenty of time to wake up and not be rushed and she was able to get on the bus all smiles and happy. So one crisis averted. 173 days to go.

So glad you made it through so well! Sorry for the pain, but hopefully it's short lived and nothing compared to what you've already been through. Wishing you a painless day on the couch with bon-bons and smoothies.

After 5 days of loving school, my daughter (not the kid I usually post about) had major anxiety this morning. She wouldn't take the bus and I had to drive her and walk into the classroom with her (1st grade). Thankfully, the teacher seems understanding and I quickly reviewed some things that might help - talking back to the anxiety fairies, keeping busy, visualizing happy colors - and the teacher seemed to understand (we shall see). So I think as much as all of us are hyper-sensitive to our kids triggers, we have to remember that this is a stressful time of year and if possible, we need to give our kids the tools, encouragement and sometimes kick in the butt to get through it if they can. If we give in too soon, we risk robbing them of that feeling of success when they rise above it and face their fears. I sit here sick with worry for my daughter (is she sad, will the teacher pick up on clues, will loud noises set her off, will she explode when she gets home). But I also have to try to be the coach and not the conductor. Sometimes we need to support without rescuing. God, it's hard. That said, one suggestion if things get super bad is to make an agreement with your kids. If they can get through the morning, you'll pick them up at lunch. If they can get positive feedback from teachers, they can skip a homework assignment (obviously with a teacher's consent that you'd have to pre-arrange in a 504 team meeting), etc. Parenting by bribery. Sometimes if the carrot is big enough, they can fight through the OCD/mood issues, with your coaching and practicing tools (time to dust off What to Do When Your Brain Gets Stuck). Cobbiesmom - you and your son should both read John March's Talking Back to OCD - it's great at putting the responsibility for thought-control onto the teen and making the parent step back. You can get locked into a no-win situation if it's you doing all the work. Your son is the only one who can control his thoughts and he has to take responsibility. If he were unable to function, home-schooling might be an option. But this sounds like your son is looking for an escape from doing the hard work, from taking responsibility for his disease. I don't mean to sound callous. I really do sympathize - my son has begged me for the same thing and I have thought about it more than once. But like you, it's not something I want to do and it would be a negative experience. I think you're right to look for a therapist who can help you with CBT/ERP. It is so so critical. This is a long treatment road. Maybe meds will get us to the finish line, but the therapy is what helps you hold it together during the journey. Stick to your guns on this one. Give him the tools to help himself but also let him suffer the consequences of his behaviors if he doesn't at least try to use his tools (there will be lots of failures - so also reward the good efforts and do let him indulge when he's really trying, even if it's a small effort). Philamom - if you're heading down the 504 path, best thing you can do early on is get a letter from your doctor. You can post over on the Pandas forum - there's some sample letter floating around - and I'll send you the letter we used. Write it for your doctor and then ask him/her to print it on their letterhead and sign it. You can waste a lot of time waiting for a busy doctor to write a letter and it may not cover everything you were hoping for. The letter, with diagnosis and a list of appropriate accommodations included, should be enough to get you the 504. You may want to google your state's requirements to make sure you include the right buzz words in the letter. Also maybe have a heart to heart with the teacher. If you walk away with a feeling in your gut that this will be an uphill effort, maybe approach the administrators you have a good relationship with and ask them what can be done to improve things. There are lots of ways to show comprehension besides writing. You can make dioramas, posters, powerpoint presentations. We struggle with the same thing here. Luckily last year's teacher gave lots of projects that didn't rely on writing. I also found that letting my son stand at the homework table and letting him chew gum helps his concentration. We've also printed dark vertical lines on paper and placed that under his homework paper. The dark lines show through and help him keep his writing a little straighter/aligned. Put dark graph paper behind math sheets. I'm struggling with how much to tell my school about lyme. It's almost better to stick with Pandas because they don't assume they know much about it. With lyme, they all know someone who had it, took abx for a month or three and now are fine. To try to convince them that your kid has chronic lyme is almost worse than discussing some rare, strep-triggered brain attack. For now, our 504 remains under the Pandas umbrella.

Dr K's site has this, will also PM you so I can send you an article.

Heatherdawn, You may want to PM Suzan - she is mostly on the lyme forum now. FWIW, my son also had a negative reaction to Tamiflu a few weeks after this original post (it was when H1N1 was rampant). He developed symptoms of tardive dyskinesia that stopped as soon as we stopped the Tamiflu. Don't know if it's coincidence or not, but both Suzan's daughter and my son were later diagnosed with lyme/bartonella and tested with elevated viral titers (various viruses). For my son, we found he his body does not correctly utilize zinc (called pyroluria). I think Suzan is also treating her daughter for the same condition, but she has two daughters, so I may be confusing the two girls.

I hadn't heard of Kavinase before but it looks like mostly a B6 supplement. You may also want to explore detox treatments. Alpha-lipoic acid (ALA), N-Actylcysteine (NAC), SAMe, Milk Thistle, bentonite clay, activated charcoal, 5-HTP and chlorella are all things you can explore. You can also use the forum search tool to find old discussions on the topic. Be advised that some of these things should not be used together (e.g. NAC, SAMe and 5-HTP have similar effects and could amplify each other so pick one, not all) and Milk thistle is contra-indicated if you're taking certain medications. So do try to do some research or ask your LLMD. I personally have become a fan of chlorella as a great thing to mop up toxins. Unlike charcoal, it has the added benefit of keeping the bowels moving, but the down side is if you only take a small amount (e.g. 10 pills) you can feel nauseous and it's better to take more, not less. My daughter felt sick to her stomach taking 10 but my son takes 30 with no problem. The pills are small and an adult could take 5-10 in one swallow. The best/cheapest source I found is from mercola.com ($14/450 pills) We have all dealt with rages on this forum. Most of us have kids with tick-borne illnesses, but then the moms have discovered they have it too. So you'll see a lot of kid issues discussed here, but adult issues as well. The kids have a really hard time controlling their feelings. Cognitive Behavior Therapy helps a lot with anxiety and rage. The brain detox stuff like NAC/SAMe/5HTP/ALA help with anxiety. The liver/gut detox helps with rages - in my experience. You can also go to google books and look for some lyme books or detox books - you can often read most of a chapter of a book for free.

Antibiotics will not effect the general lyme tests. It's only some of the more specialized tests that require you to be off of abx. In fact, an antibiotic "challenge" is often used by lyme doctors to provoke the production of antibodies and give you a better chance at an accurate test. However, if you only did the lyme test through a local lab, the results may be less than reliable as a rule out. Most labs look at specific markers. They intentionally do not look for the most specific lyme markers, because a decade ago, a vaccine was under development that would have made the entire inoculated population test positive for these markers (bands 31 and 39). Even tho the vaccine failed, the CDC has yet to revise its guidelines for which bands should be tested. Therefore, in order to test for these specific bands, you need to use a specialty lab that tests for them. Most of us have used Igenex Labs out of California. My son was completely negative on a standard Western Blot lyme test run by our local lab. He had 5 bands that showed up on Igenex. So if your local labs come back with positive markers, that's one thing. But if it comes back negative, you unfortunately can't wash your hands of lyme and assume it's not there. The lab tests are very crude (even Igenex, tho it's the "best of a bad situation"). Lyme, like Pandas, remains a clinical diagnosis until they can figure out better tests. As for a Texas doctor - someone could make a fortune hanging out a shingle in Texas. I know so many people from that state who fly to other places for treatment. Hopefully someone here can help you. You can also post on www/lymenet.org under their "seeking a doctor" section and ask for input there.

Good find! Wish it were even longer - but a great reminder to be aware. Thanks!

Sorry - kindergartners do not spin and fear grass poisoning because they're having trouble adjusting to school. It's great that your ped is willing to explore things but it sounds like you may be stuck in the driver's seat for quite some time. I think you're right to pursue both strep and other triggers. Acute-onset symptoms certainly point to an infection or sudden environmental trigger. There are Pandas doctors who can help you explore this avenue and there are integrative doctors who can help you look at some of the other things you mention. In any case, I would prepare yourself for a change of doctors (or adding a doctor in addition to your current one). Acute-onset illnesses are new to mainstream pediatrics and for the most part, you're going to benefit more from someone who looks outside the box on a daily basis. The good news is that many of us took years to get where you are, so as scary as it feels, you are already ahead of the curve. You may also want to search old threads on CBT (cognitive behavior therapy) and ERP (exposure/ritual prevention) for tips on how to deal with anxiety and behavior issues. Under the Helpful Threads section, I believe you can also find a list of some really helpful books. It's a good way to start while you're pursuing the medical route. CBT and ERP are very powerful tools, even tho they take a lot of practice. They give you life-long skills.

Serious positive thoughts (and my own version of prayers) being sent your way. I know how nervous and excited you must be. I hope this is a major step forward in your healing. How long is the expected convalescence?

That's generally the thought process we followed. When the things that should have worked didn't, it led us to the conclusion that something was still there, preventing recovery. Now that we're much closer to the root problem, he's much better. I think you're right to pursue the active infection idea.

At some point, you will likely need to push thru "herxing". There is no magic drug combination (IMO) that can get you to good health without any difficult stretches. But, given your daughter's unique history, your best bet is to have this conversation with her treating LLMD. Anything any of us tell you is without the medical training, experience or access to your daughter's medical profile that your LLMD has. You can also ask about non-steroid anti-inflammatories. Perhaps that would be more effective than changing antibiotics. Any attack on an infection will produce inflammation and toxins. So these are additional areas to discuss. That said, I strongly urge you to add Cognitive Behavior Therapy and ERP therapy. Now that her OCD is less severe, it's a good time to re-train her brain. Rages, meanness, compulsions - are all helped by changing the way you mentally react to stress. IMO, drugs alone will not be nearly as effective as a combination of medical and psychological treatments. The skills you learn with CBT and ERP are life-long and very powerful. Yes, it is a lot of work, with lots of "failures" as you practice and re-train your way of thinking. But it can be so very effective, especially if the medical treatment is helping to knock the OCD piece down into a more manageable component. You can start with "Talking Back to OCD" by John March, "What To Do When Your Brain Gets Stuck" by Dawn Heubner and by going to http://www.ocfoundation.org/treatment_providers.aspx to find a therapist. You want someone who specifically uses ERP, not "talk therapy". It's like exercise. You can't do it a few times and see immediate results. It takes daily hard work and practice. But if you stick with it, the impact can be huge.

I agree with DCMom in that if it's OCD driving the anxiety, ibuprofen isn't going to be magic. It may lessen the intensity to a point where ERP can be more successful, but CBT/ERP is probably going to be an important tool for getting over the school hump. Obviously, addressing the root fear is important. As for your question, we found that during periods of need, it was better to dose on a regular schedule - 2-3 times/day every 6-8 hours rather than on an as-needed basis. Easier to keep the horse in the barn than to get it back in after it's already out. We found 1/2 an Aleve (which was 125mg/55 lbs) was better because it didn't wear off until the end of the school day. I tend to agree with your mom, that the relief you get can outweigh short term risks. But also hear you on your concerns - it can be tough on the gut and liver. You can support the liver with detox, and there are several threads on this topic on the lyme forum. You can help the gut but not dosing on an empty stomach, supporting with probiotics, etc. We've tried tumeric capsules but saw no benefit. Curcumin is also anti-inflammatory. One product I seriously considered was Lutimax http://www.lutimax.com/ If you search luteolin on Pubmed, you find lots of research to support its effectiveness. S&S beat me to it and tried it for her DD but had poor results, so I never pursued. But...you should PM S&S because there may have been non-Pandas factors that effected her experience and I would still consider it in the future, but for now my own DS is in a good place and this isn't on our radar at the moment. So just something for you to look into. You don't get into why things are boiling up and I don't want to pry. Obviously you know enough to look for triggers, strep and otherwise. Hope it's more from temporary factors and is short lived...

It may or may not help, but here's a look at a variety of rash presentations for tick-borne infections - obviously won't help you rule anything in or out but sometimes it helps if you recognize something similar...http://www.drjoneskids.org/ if this link doesn't bring you to the correct page, on the left you can scroll down to the link that says "rash photos".

Every kid is different. Some do better if they have no idea what's coming and other do better if they have time to prepare. My kids freak if a blood draw gets sprung on them. So we do pretend blood draws in the days prior. We take a pretend needle and go through the whole thing. I tell DD that it will hurt for just a moment, like a small pinch. I don't lie to her about the hurt, because I'd lose her trust and there will be plenty of blood draws in the future. We also use Emla cream, put on right at the start of the appointment - it takes about 20-30 min to work well. We also talk about the "magic hug" and she buries her head into my belly while she puts her arm out to the side where the doctor will do the draw. She turns her head the other way. The magic hug helps her know I'm close and keeps her from freaking as the needle approaches. I also sing her silly songs during the draw. This distracts her and makes her think I'm a nut case, but so long as she's thinking about anything other than the needle, that's ok. Usually I sing a rendition of Jingle Bells, with nonsense lyrics like "I'm so brave, I'm so brave, I'm so very brave. In 30 minutes I'm going to have hot fudge running down my faaa-ce" (with the promise of a Sundae for barvery). Or if your son appreciates irreverent humor, there's "I'm so sad, I'm so sad, I'm so very sad. My giraffe ate all my licorice and now he's going to baa-rf." Anything to distract them. If your son runs toward the more practical, you can have the nurse walk thru the procedure step by step and do a pretend poke - with the cap still on the needle. Personal experience says never let them see the actual needle tip or it quickly goes down the toilet. Hope one of these ideas helps a little. Good luck.

Make sure you get on the LLMDs cancellation list - you can sometimes get in w/in 2 weeks if you can be flexible and make an appt on short notice. You can also start some detox to help the body get a little stronger/cleaner. I personally like milk thistle for the liver but you can't take it if you're allergic to ragweed (same family). You can search the forum for other detox ideas as well. Good luck!

Under the helpful threads section, there are several articles that discuss bands. I'd definitely review those for your own peace of mind. Son #1 certainly looks like he should see an LLMD for both lyme and bartonella (and I would get that missing page - even if it means calling the lab directly) Son #2, if he has bartonella, should probably see an LLMD as well, and it's possible, although he looks far less 'lymey', that when you start treating bartonella, you may see bands turn positive. Or, instead of re-testing, your LLMD could look at other indicators, such as C3a and C4a immune complexes, and clinical symptoms. The "proof" will be in the pudding, if he responds to treatment. Same as it is in the Pandas world. Based on these results, I think an initial visit with an LLMD would be advisable.

Totally agree. It only means inflammation. It does not mean there's no lyme. My DS had awesome reprieves from issues when he was on prednisone. But it could not last because an active infection was always there, causing inflammation all over again. It's only been thru a year of treating for lyme, bartonella and for pyroluria that we're finally seeing the good things we used to see on prednisone - only this time it's more lasting. I think your son's response was a glimpse into what's possible. Now it's a matter of finding and treating the triggers.

You may also want to post this on the lyme forum of ACN. There are 2 or 3 members there from Canada and may have doctor suggestions for you. While you are looking back to records, you may also want to look for any other medical events or changes to the environment (did you have a water leak - which might indicate mold), add a family pet, did anything change in the months just prior or around the same time?