LNN

See, I wasn't that blown away by the book - probably because I don't have the genetic testing info that you have at your disposal. (DS's MTHFR test came back normal, still waiting for DDs). But if you like the book, you'll be blown away by the first DVD. About 75 min into it, she goes into a 20 min explanation of what she feels is happening with pandas specifically and how glutamate/calcium/TNF-alpha all do their thing to the brain. It was, for me, a really powerful discussion. Even with DS's normal ability to use folate, I am still of the feeling that he has a folate deficiency. The good news is I don't have to spend extra money on methyl-folate and can give him regular folate. But I'm still starting a trial of supplementing to see if it takes us further. Adding the zinc/B6 over the past few months has made a big difference. Last week's teacher conference was the first I've had in 3 years where the teacher couldn't believe DS was sick, where he seemed on par with the other kids ability-wise. This was huge for us. In the week I've been giving the folate, he's been much more patient with his sister and very even tempered. I too am confused by the whole B12 thing. It would seem that in my family, excess homocysteine is a big problem. So I'm not sure how Yasko and virtually every other doctor can say everyone can benefit from B-12. DH tried a sub-lingual supplement from his doc and developed a weird tingling/stinging sensation in his legs, so he stopped after only a few days. I'm not getting the B12 thing or how to encourage that homocysteine back to methionine conversion. Ideas? I'm sure most members have long ago stopped reading the methylation threads. But for anyone who's kid(s) continue to struggle beyond the two months after an obvious infection, I really think methylation blocks are playing a role. But it's really hard to explain. I find myself understanding more and more as I read, but still not well enough to try to explain it to someone else. The Yasko DVD belongs on every geek's Xmas list. It just changed my entire way of framing the problem and how to treat it. Not that everyone will walk away with the same answers. Not that yasko is 100% right or that she isn't somewhat skewed by a profit motive. But that's when I also turn to Rich Vin Konynenburg's writings on chronic fatigue. When you start to find the same info presented from multiple disciplines and reaching the same general conclusions, it feels more and more "right" - which is what I loved abut Nancy's original post and the article. Focusing on the body's fundamental ability to perform at 100% - and supplementing the weak cogs in the system - seem to be making a huge difference for us.

Hey Kim! I've missed your posts! Wow, I look back at those old threads and am always struck at how incredibly technical and well-researched those conversations used to be. I was truly humbled by some of the brains (including yours) that were trying to digest all this stuff for the rest of us. The conversations you and Buster used to have - always had to get out my dictionary I did find it very intriguing - and will now have to spend days trying to understand it. At this point in my thinking, I do feel that our kids have block(s) in their pathways (be it methylation pathway, trans-sulfuration pathway, Krebs cycle or any of the others I've yet to learn about). These blocks prevent the body from responding properly to infection and health challenges. It's like asking the body to fight a battle with inadequate weapons and supply lines. So more and more chronic infections set up shop and alter the whole system to better suit its needs (hey, germs, now that we've confused the T-cells, lets block the detox pathway so more heavy metals accumulate that we can use in our biofims). The blocks lead to more and more problems that abx alone can't solve. (IMO) So I'm very in favor of finding the block(s) and supplementing to build bridges over/around/thru those blocks. In an episode, I'd be really intrigued with the idea of MsrA. I would see it as the King of Anti-inflammation. I've also come across betaine/TMG as a possible suppressor of TNF-alpha inflammation and plan to study that more as well. In a remission phase (where my DS seems to be), I'm trying to supplement at various points where I suspect blocks exist and am hoping that once the blocks (and chronic lyme infection) are cleared, we can reduce supplements and be left with only those that are needed for genetic/lifelong blocks (in our case, probably folate and zinc/B6). My DH commented this morning that he feels DS is doing much better as a result of our new focus. When DH starts joining the chorus, I know we're onto something. Have you tried S-Methyl-L-Cysteine to supplement?

Chris, I would remove your phone number - if you google "plasmapheresis" it is very likely your post will come up in a public search and I don't think you meant for your cell # to be broadcast across the entire internet. Just log in, go to your post and hit "edit" to remove it. I'm so sorry for your dilemma. If money were no object, I would tell you that pex is helpful. But if it is going to drain your last penny, I would not recommend it. IMO, it is not a "cure" and while beneficial, isn't worth spending your last dime on. Cigna did cover our pex but there was still cost - travel, hotel, meals, deductible...costs to see the doctor who ordered it. We were still out of pocket about $2K after we met our deductible. A few months ago, Fxcfer was beside herself when she couldn't get pex for her son. She felt it was his last best shot. When that door closed, she went on to discover a much simpler solution that is giving her great results so far. I'm not knocking pex. I was glad we did it. But in hindsight, it wasn't "the" solution and I now think simpler, less invasive options could actually be a better option for some kids. It's only my own personal opinion, but given your situation and location, I would contact Dr Weil's Center for Integrative Medicine http://integrativemedicine.arizona.edu/ They are trained to look at the whole body and I think this is the sort of approach that can help sick kids who've been dismissed by conventional medicine. I hope you find help soon. Try not to get discouraged. I think there are affordable solutions that can help your kids.

Thanks! Love seeing info "validated" by reading it from multiple docs.

T Mom, I don't have anything similar to what you're dealing with, but my DD6 has had eating issues - GERD related but probably a little OCD driven - she has intrusive thoughts and won't share those all the time. We are seeing improvements from treating methylation issues. I believe her biggest issue is with not having enough available folate (B9) to convert into seratonin. We have started supplementing folate as well as zinc/B6 (she tested borderline for pyroluria) and she has gained weight. The other day, she asked for TWO sandwiches, when in the past it was all we could do to get to her to eat a half sandwich. I know you've had really positive results from IVIG and that's so awesome. But if you want to look into something less big-gun, Nancy just posted a nice overview of methylation and it might be worthwhile to give the folate a try. Both my kids also had good results with inositol (B8). I know this doesn't answer your question directly. But wanted to pass it along as "food for thought". You might PM EAMom for her experiences post-IVIG. This is a big interest to Meg's Mom too. So maybe drop her a line as well. Hope it's something you're able to put behind you soon! xo, Laura

Dr Ritchie Shoemaker is "the" mold guy - has done research published in per-reviewed journals, has years of clinical experience treating patients with mold-related illnesses. His web site gives a good overview and the tests he feels are relevant are here: http://www.survivingmold.com/diagnosis/lab-tests But the whole site is worth reading. Another good overview is here: http://www.publichealthalert.org/Articles/scottforsgren/biotoxin%20pathway.html Shoemaker has a good book called Surviving Mold and a newer one called Mold Warriors. He talks a lot about chronic inflammation. He has opinions on which labs do the best job of providing reliable results - particularly C3a and c4a. if you get to that point, ask on the lyme board. Since it hasn't been our big focus, I'm not as up on the details as other members. I initially scoffed at mold. I have asthma and allergies and my health drastically improved when we moved into our current house 10 yrs ago. But... DS had some lab results that said he would have a problem with mold if there was any, so I went hunting. I risked divorce by asking DH to spend the hottest day in July taking 6 cargo van loads of basement junk to the dump - mildewed boxes, clutter - then cleaned black mold off our water tanks. I vac'd the empty basement with the wet dry vac. Then ran around squirting things with peroxide. Peroxide kills mold. Anything that bubbled was cleaned. So it was very cathartic (after DH started speaking to me again). But no big changes in health. Then in Sept, when the windows closed and we started to stay indoors, I became hyper-itchy and got hives every day unless I took a Zyrtec. At the suggestion of a lyme board member, I took my washer apart - and found 12 years of mold growing between the metal drum your clothes go into and the plastic outer drum that surrounds the metal drum. Grooosssss!. Two bottles of peroxide, rubber gloves, face mask...and a day later - no more asthma, no hives, no more zyrtec. There's a possibly suspect carpet in one room that will be replaced by wood flooring next week. It's basically been a slow hunt. Over time, I've gone around with my squirt bottle of peroxide, and looked in places water or condensation might be - under the sink, bathrooms, sink drains that don't get used every day, any wall where there's been a leak, the attic... It hasn't been "the" thing for us, despite my hives. But it does feel good knowing I'm removing things that are adding fuel to the fire. And it's actually helping me more than DS. I don't want to turn the whole thread into mold. I also think the other stuff has been equally critical. But don't want to run on at the mouth about it. There are KPU and methylation threads you can search or PM me if you have any interest in that stuff.

I can only offer my experiences - so take whatever is helpful, disregard the rest. My son was once a huge ticcer (with clear strep association and high CamK 180). We could get remission with abx for awhile, then prednisone tapers, then pex. But none of it gave us more than a 2 month remission. IVIG had horrible consequences with no upside whatsoever. We then found lyme/bartonella and saw some really nice improvements. This time we got 4 months recovery/remission - then hit that wall again. We looked into mold, found and corrected some issues, but the holy grail was still elusive. Then we turned over the KPU/pyroluria stone and found DS was zinc/B6 deficient. Saw some really cool -and lasting - improvements. Since then, we've gone on the methylation trail and are adding other things (folate, magnesium etc). And the improvements continue. Now, DS remains on abx and we've been holding lyme at bay while we've addressed this other stuff. That may need to be re-looked at at some point. None of this is to suggest "oh, your DS has x. Or he has Z." But IMO, if you are doing the Pandas treatments and not seeing the improvements you feel you should be, then I'd look for additional triggers. Maybe infection, maybe environmental toxins, maybe nutritional such as pyroluria/methylation issues. It's possible there isn't ONE cause but several for your DS. I've been in your shoes - watching the tic explosion is heart breaking because it's so clear that something is seriously wrong with the brain (tho having lived with both, I'd still take tics over OCD any day). But for us, it was multiple issues, building on each other. The best thing about the lyme dx wasn't that it suddenly became a clear path to recovery. It was that it put us in the hands of a doctor who "specializes" in looking at the whole body instead of one part or one system. He didn't give us crazy looks when we wanted to test for one thing or another. He helped us explore things that have really helped far beyond getting rid of a particular infection. I know people on this forum have skepticism about LLMDs and that you'll automatically get a lyme dx. In our case, that hasn't been true. My DS started there but has gone beyond that. He is finally holding on to his gains. Keep digging. You will find the keys that are unique to your son and get - and keep him well. Believe that.

It certainly sounds like OCD. Addressing the behavior (compulsion) alone will probably not get you very far. He needs coaching to help him address/face the obsession component - the fear that drives this incessant behavior despite negative results. If you watch the shows like Hoarding on A&E, hoarding is one of the sub-types of OCD, along with fear of contamination, need for symmetry/counting, need to check and re-check, scrupulosity (religious or morality issues), and intrusive thoughts (e.g. fear of harming self or others). Many of the victims on some level realize their behaviors are having negative consequences, but the fear of NOT giving in to the compulsion is far greater, so they keep giving in. In your son's case, there may be a huge, albeit unfounded, fear that if he doesn't play with a friend, that friend will suffer a horrible fate - that he must "watch over" that friend to prevent a horrible accident. Or maybe if he's not with a friend, something horrible will happen to your son - that the friends somehow keep the evil away. So maybe he knows he's driving people away, but his need to be "protected" by a companion is far too great, so the consequences seem insignificant compared to the consequences of NOT having a playmate with him (like a see-saw with "turning my friends off" on one side and "dying if I don't have a playmate" on the other end). Whatever his fear, it may seem ridiculous to YOU, but it is very very real to him. And even if he can see a glimmer of its irrationality, the risk of telling OCD "no" is far too great. So you need to get to the root of his fear and then work on ways to get him to face up to that fear so he can stop being ruled by it. This is no easy task. Often, verbalizing the fear might feel like you'll make OCD so mad that it (the OCD monster) will make horrible things happen if you reveal the secret. OCD is literally like a kidnapper who has taken your child hostage and is telling him that he (OCD) will kill him if he cries out for help. For PANS kids, medical treatment can help greatly diminish the fears and bring the anxiety down to a level where you can work on this. But in the meantime, I'd work on giving your family the vocabulary to work on ERP therapy. I'd start with What To Do When Your Brain Gets Stuck for your son and Talking Back to OCD for you. You might also look for a therapist trained specifically in ERP (exposure/ritual prevention). You can find a list of therapists in your area at www.ocfoundation.org - look for those with BTTI training - this is the course offered by the OC Foundation on how to do ERP. The thing about OCD is that you can't just say "don't do it." You need to extinguish the fear that's driving the behavior. A very hard task, but not impossible. As I said, medical treatment makes this much easier. But your best strategy is a combination of medical and ERP therapy to make sure you aren't left with residual/learned behaviors. ERP gives excellent tools to cope with anxiety for your entire life, well past this current crisis. Can't recommend it enough.

We did the Shoemaker tests http://www.survivingmold.com/diagnosis/lab-tests which tells you about your body's genetic ability to handle toxins (the HLA DR gene) from mold and lyme and whether either could be contributing to your issues. We used Labcorp for these. We did a little mold hunting but didn't feel it was the "biggie" issue for us. So we tested for KPu/pyroluria using Vitamin Diagnostics. This turned out to be a huge issue for DS (an issue for DD too but less so). We saw big improvement in the first week of treatment. Next I stumbled onto researching methylation and focused on what vitamins/minerals/amino acids have various cause/effects in the body. You can do genetic testing for various mutations that effect various points in the cycle. These genetic tests can be done by any lab (research Amy Yasko for a list of various genes that are involved in mehtylation - she has a lot to say about aluminum too). Given limited funds, I've focused on the points in the cycle that seem to be an issue for us and I've started adding supplements that impact that point. It's a little trial and error, but trying a bottle of niacinamide is cheaper than testing lots of genes. We just don't have the funds for chasing every trail the way we used to. The approach you've taken might be just as enlightening. I'm just not familiar with it. The only caution is that the real issue with some of these deficiencies is that it's a deficiency within the cell that matters. Blood tests generally measure what's in the plasma, not what's in the cell. So in the case of KPU/pyroluria, my son has a normal zinc level in his plasma. But he pees it away without the cells being able to use it. So we never would have found the deficiency with a traditional vitamin/mineral test. It had to be a specific test for KPU, which looks for a byproduct of heme syntheis called mauve factor. I know infections can cause you to have similar "hidden" inter-cellular deficiencies. So my personal hesitation would be that you could miss some things. But...it seems every thing we've ever investigated have imperfect tests, so you have to start somewhere...I hope it gives you some really good results!

While bartonella is a good one to check for, there are things beyond TBIs that should be considered as well - heavy metals, mold toxins and vitamin deficiencies. We have seen rages disappear in DS from bartonella/lyme and pyroluria tx. We are starting to see the mood swing, bi-polar she-devil anger subside in DD now that we are treating methylation issues with methyl-folate and other vitamin supplements. Regardless of cause, cognitive behavior therapy has helped both my kids take responsibility for their feelings and how they allow those feelings to control their actions. I personally feel a two pronged approach - medical and psychological treatments - have the greatest impact.

We did 5? weekends - it got worse for us, not better. I don't think we allowed enough time between pulses to detox well enough. When we're done fixing the potholes in the road, I suspect we'll consider it again next spring or summer. I'd then start with only one day (2 doses) and consider every other weekend. Then build up as tolerated. In our case, there was just too much fall out to push thru it. We did enjoy a great few months afterward, but to do it again, I'd go much slower. Listen to her body. If she recovered from last week, then maybe try every weekend, or 4 doses, and see how she recovers over the next week. If she's still not in a good place by next Thur, give her a break and skip a weekend. I think I made the mistake of doing another pulse before things had settled down from the last one. Good luck!

This is one of the best lists of the different ways OCD can manifest in a child - my bet is that some of these things are going to hit home for you. OCD is notoriously good at hiding. It is not just the stereotypical hand washing and repetitive behaviors. OCD in a child You may also want to look at the "helpful threads" section at the top of the forum. There's some really good info for newcomers.

I personally feel that Tourette's is just a broad label you give someone with vocal and motor tics but the label does nothing to help you fix the underlying condition that's causing the physical symptoms. I think once you break down the power of the close-minded gatekeepers in the TS world (who are not highly thought of on this forum), science will find that TS - at least in some cases - has an infection trigger. It may have a genetic component, but something switches that gene "on" and I personally feel you can switch it back "off". My son was once a huge ticcer - and has been tic-free for quite awhile now. Same goes for all those other autoimmune diseases. I don't think you're doomed to a life of "coping" with something just because your relatives had to. In my family, there's a long list of "hereditary" diseases - like macular degeneration, congestive heart disease, diabetes, hearing loss - and it turns out that all of these diseases have something in common - too much homocysteine. Homocysteine production is part of the methylation cycle that occurs in every body. If you have an inefficient methylation process, you can develop a number of chronic health problems. Fix or work around the inefficiency and you can greatly reduce the likelihood that the genes for these diseases will get turned on (methylation controls DNA function and is implicated in cancer and other genetic "switching on" actions). The improvements you see from diet changes are part of this, IMO. On the Latitudes forums, you'll find that most of us think the issues our kids struggle with are biomedical. There's a cause for those issues and if you get to the root of that cause, you can fix things, not just apply pharmacological band-aids (tho band-aids may be very appropriate for getting the family through bad times while you search for that cause). Do your kids have Pandas? You'll eventually find this answer as you keep digging and find doctors who will help you look past labels and superficial band-aids to mask symptoms. You'll read a lot about all sorts of infections and environmental toxins and nutritional deficiencies that, when addressed, work far more effectively than the treatments you're offered in most medical practices. It might be a long journey, but the families on these forums have all done a lot of research and have a lot of different paths for you to explore. I have to agree with DCMom. April is way too far away, especially if that doctor isn't tuned into functional medicine and how one body system impacts another. Most docs stay in their silos. You're probably going to get better results working with someone who understands Pandas/Pitands/Pans (pediatric acute-onset neuropsychiatric syndrome) or is at least willing to learn with you.

Every year, someone starts a "Happy Thanksgiving" post to wish everyone a holiday that reminds us of what's most important and that despite our current struggles, we all usually have much to be thankful for. It's been a hard holiday for me the past few years, since my son's very worst episode was on Thanksgiving Eve 2008 (precipitated by an OCD-triggered pie-making decision). It's a very PTSD time for me. But thankfully, this year is different. I am more full of hope and thankful than I have been in years. I of course wanted to thank all the old timers here and on the lyme forum (and of course Shelia ) who helped me get here and who will help me as we work through our remaining hurdles. Without your support, friendship and mega doses of geekiness, my kids wouldn't be in such a good place. So from the bottom of my heart - thanks guys! I also realized today, when I got an email from a friend, and it contained some names I hadn't seen in a long while, that at least some of the old timers are gone - their kids so much better that online support groups have become a memory. And that's pretty cool. As for my old friends who are still here, I think all of our kids are way better than they were when we all first met. Each of us got there in very different ways and have developed different philosophies, different things we now offer in our posts. But we all got there somehow. I also realized that there are new comers, people who are in that frantic place where doctors won't help, where sleep gets interrupted at 2 am and you find yourself on the internet, desperately searching for answers. And I just wanted to let those of you in that place know that it will be ok. Our kids may go thru some really awful experiences. Our families will have memories we never wanted them to have. But you get through it. One way or another, you survive. And you slowly find answers that work for your child. Out of the hundreds of opinions, advice and trails you might find here, something usually ends up being a part of your own puzzle. So have faith - in whatever fashion that means for you. You will find answers and get through this. In the meantime, don't forget to be grateful for the blessings you do have in this moment and don't forget to show your family how much you love them. Happy Thanksgiving everyone!

My DD6 has had some sort of viral thing for the past two weeks (and she is on antibiotics for lyme, so pretty certain it was viral). I initially tried an oregano product (capsules) from our health food store. It helped, but not long term. We then tried andrographis and it seems to have finally done the job. http://en.wikipedia.org/wiki/Andrographis and http://healthlibrary.epnet.com/GetContent.aspx?token=e0498803-7f62-4563-8d47-5fe33da65dd4&chunkiid=21485

Improve/clear the methylation pathway and yes, glutathione production is one of the (many) benefits. There are two things some doctors don't like about supplementing glutathione. One is that it's poorly absorbed. There might be some advantages to liposomal glutathione and some might get absorbed in the gut to help with gut issues, but only a very little of what you take seems to make it's way to the rest of the body. The second is that glutathione is one of those things (like NAC and melatonin) that when you supplement, your body might stop making as much of it's own. So when you stop any of these, you need to taper down to signal to your body that it needs to start making more of its own again. People like this author think you're better off fixing methylation, which in turn lets the body make more of its own glutathione when and where it's needed. That's what I've gotten out of this and other articles, unless I'm misunderstanding.

So a few people have been helping me get my arms around methylation and I went of the Geek Cliff and jumped into Geek Sea and spent hours enthralled by Amy Yasko's DVDs about all sorts of chemicals and processes I can only barely grasp or pronounce. We've taken baby steps with supplements and I have to say I'm sold. We're about to start methyfolate, which apparently gives you a short honeymoon before knocking your socks off with a detox/herx response, if you're body's been blocked due to a lack of folate. It should arrive in the mail today, just in time to ruin my kids' long weekend But in talking with a few moms, I know it's not an easy process to grasp. I've come across this link from "putting lyme behind you" and thought it might be helpful to anyone who's interested but not inclined to fork out to $$$ for Yasko's DVDs. Because of the potential for serious herxing, it's probably best to try any of this stuff after working with your LLMD and maybe doing a few blood tests. But FWIW... http://puttinglymebehindyou.wordpress.com/2011/07/02/what-is-themethylation-protocol/

Someone please tell me how you get lauriciden into their kids! Those waxy pellets - never could find a way to disguise them. Ended up tossing the whole jar.

The book is Autism:Pathways to Recovery, which was mildly helpful. Will probably help you more, as you have specific test info back already. If you go to her web site http://www.holisticheal.com/autism-pathways-to-recovery-esp.html you can get the DVDs with the book. She also has other DVDs that might be of interest. This was all I went with. The DVDs are LONG. 2 hrs each. But the first DVD was fascinating (to me anyway). At around 1 hr 15 min, she has a 20 min explanation of what she speculates is going on specifically with strep and Pandas in autistic kids. All about glutamate...surprise surprise. It kills me to pay lots of money for books by specialists who are selling stuff. I was very disappointed in Cutler's book. Like Cutler, she has her critics and some of that criticism may be valid. But this one Yasko DVD was worth the money. I can't consider her program. But am definitely using her ideas (and our pending MTHFR lab report) to guide me on supplements - and am seeing progress. Keep me posted on the doctor's appt!

You were one of the first to put me on the methylation research and I have to say, for some kids, it may make a lot of sense. I ended up getting Amy Yasko's DVDs about methylation and somewhere in there, she does talk about T-cells and B cells and the BBB. I don't dare try to repeat it - would butcher it badly. If you have the funds, It may be a wise investment of $54. I'm not advocating her program or her tests or her supplements. I am way too cash-strapped to consider that and assume I'm not alone there. But the info in the DVDs does provoke a lot of good ideas and things to try and/or discuss with your doctor (the one who suggested histadelia). You can test for metals - but you will find lots of contradictory info on how accurate the tests are and what to do about it. If you do have a methylation block, chelating metals before you address the block could make detox very difficult. You can try a few supplements, added one at a time, to see if you noticed any change. Apparently, when you give something to help a methylation block, you enjoy a honeymoon and then see a "herxing" as the block gets cleared and a detox process begins. Not something any of us relish doing without a doctor's support. But if you get really frustrated with a lack of progress, you could always do a small trial. If you think maybe copper, you can supplement with zinc for 3-4 weeks. Zinc is a copper agonist. (My kids are on 40mg elemental zinc to give you a reference range but they have a known deficiency) If you don't feel abx is helping, then follow your instincts. Not sure how much the dosing/schedule you're on is preventing anything and if you see a negative, then not sure what you're accomplishing. Not sure you'd see herxing on such a small and infrequent dose. But it's a very personal decision. No wrong or right. Unfortunately, your son is a bit of a guinea pig. But no one is going to advocate and get him the care he needs like you will. So don't be afraid of trying things after you research them. Ask your doctor for input, then try. It's probably the only way you'll be able to get a sense of which direction you need to go.

From my very basic understanding and what I can gleen from Yasko's book, It looks like the C677T is the one that hinders homocysteine's recycling back into methanionine and not the one that hinders BH2 to BH4 conversion. For C677T she recommends using 5 methyltetrahydrofolate (5 methyl THF) and avoiding other forms of folic acid as they will compete for the same binding sites. She also says make sure you use 5methyl THF and not 5 formyl THF. She sells something she calls Folapro on her site but I found something similar from Thorne on Amazon. She says to expect a short honeymoon (similar to what you see when you start addressing KPU) and then expect an almost immediate detoxing (ala herxing). The A1298C is mapped to SAMe regulation and BH2/BH4 conversion, but it doesn't look like this is your son's issue. But I'm far from any expert. best to ask your doctor or join her user group and post the question there.

We were reimbursed about 70% for our Igenex testing. You get a 15% discount if you test multiple family members at the same time. You just need to tell them so the file gets flagged. Igenex is not perfect. It has flaws same as all the other labs. It's just better than the labs that use the CDC criteria. There is a new lab that's come out recently that cultures spirochettes rather than looking for antibodies. But it is pricey and not sure if insurance covers yet. One option is to see an LLMD first and let him/her guide you.

Very cool - would explain a piece of the complex puzzle. And had no idea CF was bacterial. Thanks!

LLMDs often book 3-4 months in advance, so you may want to make an appt now for next year. Just check their cancellation policy when you book. Most don't charge for a cancellation as long as you give 48 hrs notice. If you do decide to go that route, you may want to post on the lyme board prior to your appt to help with a list of things to discuss beyond lyme (e.g. mold, KPU, yada yada). Some ideas may seem far out there, others may feel worth asking about/testing. If you are looking for someone to pursue ideas beyond lyme, you make also want to post either on the lyme board or on lymenet.org for names of docs who have broader practices. Someone like Dr J generally only treats lyme and not the other topics discussed in the lyme community. Other LLMDs look beyond. Some use antibiotics, some use herbals, some use a blend. As with Pandas, it's a matter of working with a doc who shares your views, and since much of it will be out of pocket, you want to make sure you start with one whose thinking is in line with your own.

My personal experience is that lyme testing only gave us hints - nothing so clear that everyone in a room would agree on what to do. You do need to look at the details of any lab report, not just the overall conclusion (for any disease, not just lyme). We had to take those hints, combined with a very clear lack of improvement from IVIG and a failure to reach remission for any substantial period of time, to realize that what we had done up to that point wasn't working and a new plan was needed. We tried a combo abx approach to see where that might take us. Our first combo, provided by Dr B, did nothing (augmentin XR + zith). Our second combo, provided by our LLMD (zith + bactrim) made a big difference. So that was another hint for us. We've been on that path for a year, with very significant improvements in many areas. So I think it comes down to using hints and doing trial protocols, giving something enough time to prove or disprove itself, but not so much time that you've squandered other opportunities or gone broke in the process (and I'm not bashing any particular treatment - I say this for all treatments for all diseases). I think for some of us, there isn't "one" answer or "one" protocol. For kids who respond in ways that are less typical than others, for kids with those "outlier" symptoms that don't get mentioned in the literature on a particular diagnosis, you need to consider that there might be more than one issue at play, more than one infection or more than one "diagnosis" and therefore more than one treatment that needs to be done - in sequence or in combination. My latest "discovery" is on a topic called methylation, which is about how the body takes some basic vitamins, minerals, amino acids, etc and does chemistry magic to make the body function properly. Throw a monkey wrench into one of the chemistry cogs and you get clogs that have downstream consequences. After we started down the lyme trail, after seeing really promising improvements, my DS stalled -again. Just as he had on the Pandas trail. Yet, he was better. Just not as well as others who were doing the same things. So we've done some testing and found that he has a defect in how his body makes use of zinc (essential for the immune system), B6 and probably folate (waiting for lab results). Folate is essential for seratonin production and indirectly effects dopamine and a slew of other stuff. So in addition to abx for lyme, he's taking supplements like zinc/B6 etc and that is actually having more sustainable results than any big gun treatment we've done. So I totally relate to your frustrations and pain. Why does your child not follow the script? Why are doctors stumped? Why are you still hostage to OCD? I would personally keep lyme as a question in your mind if the details of your Igenex results (the specific bands)give you any grey areas. But as for treatment and not wanting to throw tons of stuff at your kid in the hopes that something sticks, maybe it would help to look at the body foundation. Is there something about your son's makeup that results in deficiencies? Would supporting the body's basic foundation clear any clogs that would then allow your son to make better use of abx, IVIG or other treatment and help him "follow the script" that others report? I'm just thinking out loud. Not advocating any particular type of doctor or solution. Just wanted you to know you're not alone in having a "puzzle" kid and wanted to let you know that for us, adding some specific ingredients have made a big difference. You've reached a fork in the road, not a dead end.