LNN

I think water is a great detox. But I also think you need to support the other organs that help detox the body - like the liver, the bowels, the lymph system...And beyond helping things move through the body, I think there are times when you want to bind toxins to prevent them from leaking back into the body (clay, chlorella, etc). So I'm in total agreement on the water, but I think if you're doing certain treatments or struggling with certain issues, you may also need additional detox supplements at various points in time. JMO.

Kara, So glad she's doing better! I know 80% isn't the goal, but sounds like it's much better than it was a few months ago. I can't find any neuropsych symptoms for ehrlichiosis. But then, there's little out there on bartonella either. DS never tested positive for bartonella on igenex or specialty labs but he had asymmetrical lymph node swelling and other physical signs that disappeared about 3 months after treatment. We recently discontinued bactrim and haven't seen any negative impact. However, he occasionally has mild OCD thoughts in the middle of a strong herx, so it could be neuro-lyme and not bartonella that's behind that. (or it could be KPU but that's another story). My understanding is that you treat for 2 months after symptoms subside, not when test results change. Hope the mino helps you gain another 10%! Laura

One of my alert emails sent me this - thought some of you who've been reading up on Gaba would be interested. http://www.clinicalpsychiatrynews.com/newsletter/the-cognoscenti/singleview40751/experimental-autism-spectrum-drug-improves-symptoms/294b424461.html

What is your goal in seeing Dr B? Is it to do HD IVIG with him? Have him consult with someone on the west coast to coordinate HD IVIG closer to home? I think if your hope is to have a second opinion, someone who would get on the phone with another doctor and support HD IVIG, perhaps provide protocol guidelines, then the trip would be fruitful. If it is to get HD IVIG thru his office, the trip would also probably be productive, but would require multiple cross-country trips, as he generally recommends IVIG every 8 weeks. I don't have the sense that your son's current IVIG situation would prevent Dr B from being able to help you. I suspect he's dealt with other patients with a similar history where traditional blood work couldn't be done due to previous infusions. So I guess the answer about whether the trip would be "worth it" depends on your goals. If the inability to do certain testing is your concern, I suspect he'd be able to work around that. Your other option would be to schedule a paid phone consult with him where you could review your situation prior to traveling.

Ok, I will sheepishly admit I was confused by the whole article. It's such a mix of editorializing ("Insurance company whores")and science that I couldn't figure out his main point. It would've been much better if he just stuck to facts and laid out a scientific argument. I'm not really sure if he's saying "post-lyme" is just mold or a combination of current lyme plus mold. I think I recall in his C3a/C4a research article that C3a will initially elevate in lyme patients but over time, can go back to normal even when chronic lyme is still present. His use of the word "anytime" I took to mean that he'd expect a C3a elavation "at some point in time" but if you're late to the game, how would you ever know if it was never elevated or once elevated but now normal? Very confusing. I'm with you on ERMI. I need a "chronic infections on a budget" book.

Thanks for posting. Do I read this correctly that it sounds like, at the end, dr S is "advertising" new testing to determine if you're dealing with mold and not lyme? What if you're dealing with both? Here's my problem with mold - it's like finding out you have allergies. I totally get how you need to eradicate mold from a sick building. But you can't possibly avoid mold altogether. Just like you can't possibly avoid pollen. Sure, you can remediate and/or move to a new house. Possibly get a new job in a new building. But nothing says the next house or next office won't have a mold problem. I just don't see how you can ever be away from it. So what are you supposed to do? With allergies, there are allergy shots, antihistamines...if you have an HLA-DR that's mold sensitive, what steps do you take to minimize the body's reactions. Changing schools, moving etc isn't practical.

All the tests were run through labs that accepted insurance (most of it thru Labcorp) except the two urine tests - those were out of pocket.

Not sure if this is your first appt with this doctor or not. If it is, you obviously have to walk that line between letting him be the expert and yet also advocating to the best of your ability. That said, in the vitamin arena, we tested for many mineral levels and also did two urine tests - one from Doctor's Data for heavy metals ($60) and the other thru Vitamin Diagnostics (now Health Diagnostics and Research Institute) for KPU ($70). If you have KPU, you excrete zinc and B6 in your urine without allowing the body to properly utilize them (thus, blood tests may show no problem with the levels of these yet the body is starved for them). Zinc is essential for the immune system and B6 is important for neurons and brain functions. This explains it much better than I can http://betterhealthguy.com/joomla/images/stories/PDF/kpu_klinghardt_explore_18-6.pdf Other non-vitamin tests we've found very helpful are C3a and C4a complexes and Shoemaker's list of mold related markers (MMP-9, MSH, etc - hopefully others will chime in on this - not my area of expertise).

Hi, I am new to this forum and here for myself. I suspect that I may be dealing with Lyme disease and KPU/HPU. While doing some Google searches I came across an article where Dr. Klinghard is quoted in saying that Vitamin Diagnostics has the best test. In searching for this lab I came across this thread. Is the lab you mention above this one: http://www.genomeweb.com/blog/health-diagnostic-laboratory-now-offering-cyp2c19-testing I am thinking about ordering this test to see if this is part of my issue. Thank you, Kania This is the lab: http://www.europeanlaboratory.nl/ They used to be Vitamin Diagnostics - the one Dr K recommends. But they recently changed their name. My son ended up positive for KPU and we will start treatment next week after running a few questions past our LLMD.

I second Wendy's post. I too was going to suggest non-antibody tests such as the urine or FISH panels, with guidance from a lyme-literate doctor (LLMD). LLMDs are not cheap and some are not covered by insurance. But if there's lyme, it may take more than IVIG alone or in conjunction with only one antibiotic to get you to 100%. Best to do some digging or you'll always wonder and in the end, testing with an LLMD could save you a lot of money. One thing that isn't clear from your post is whether your son has struggled with these symptoms in the past (e.g. did he have low levels or sporadic OCD earlier in life) or was this sudden onset the first episode? if the first episode, it would put more weight on a non-Pandas diagnosis. Nearly everyone on this forum comes from the Pandas world, so it's not like I don't believe in Pandas. Only that sometimes it can be more complicated than just strep. It's unfortunate that some advocates and some doctors who devote enormous energy to treating kids with an under-researched, misunderstood but very real disease (Pandas) dismiss tick-borne illnesses so readily and are so reluctant to entertain their roles in sudden-onset neuropsychiatric symptoms. I don't think everyone has lyme, but I do believe it's important to rule in or out with medical testing and clinical response, rather than make assumptions based on personal beliefs or experiences. (ok, off my soapbox now). One other bartonella symptom I don't see on Wendy's list is asymmetrical swollen glands. My son had this for 2 years and 3 Pandas doctors didn't know what to make of it. This went away shortly after treating my son for Bartonella. You are of course asking a group of people who are biased toward lyme. So I'm glad you asked the same question on the Pandas forum for balance. In the end, you have to go with your gut. Neither disease is well enough understood and neither has definitive testing to help you chart your course. But please feel free to ask additional questions and we'll help you try to sift through what must be a very painful and confusing time.

When I first discovered Pandas, I asked for a 504 meeting, prepared a powerpoint presentation and expected everyone in the room to go "ahh - got it. What can we do to help?" Wrong! The early school years are spent screening lots of kids and fitting them into classifications and doing lots of CYA for state legal requirements. I was sadly disappointed but it was more about CYA than about helping my particular child. Now, this is due partly to the personality of the school administrators. So it's thankfully not true for everyone. We only got the 504 (after a letter from Dr L) at the end of 2nd grade when he was "graduating" from that school and that principal wouldn't have to deal with us. When my son started a new school for 3rd grade (same school system) the principal there was much more concerned about individual needs. I started slow (at this time, we found lyme as well and I kept quiet about that - didn't need them thinking I was a nut right off the bat). I showed them examples that were teacher-oriented. Handwriting samples in and out of exacerbation, math samples in and out of exacerbation, spelling..things that spoke their language. I also asked them to do an OCD example - I had them rub one eyebrow in the opposite direction that the hair grows. I told them to not touch it for 5 minutes. I asked them to recognize how uncomfortable and distracting it was and told them this is what my son would experience throughout the day as OCD or anxiety or ADD kicked in. Then I shut up and let them talk. Not every idea they came up with was appropriate, but it got them engaged. I tried not to be the expert and not to make them understand behaviors - before getting to know him, it would've sounded like I was making excuses. Over the year, there were times they didn't get it. But they were at least part of the team. I wasn't a nut. You need to ask yourself what you need from them. They may never totally "get" your son or the disease. You just need them to be willing to communicate with you and make accommodations in a fluid manner. They need to feel they can help, not be on the opposing side. My personal opinion - spoon feed them. A brief description of the issues, some examples that teachers can relate to, and allow them to make suggestions - even if you feel they aren't spot-on. Ask for a monthly conference or phone call. On small discipline issues, nod and agree, then quietly do what you feel is best. On major ones, give lots of motrin (our Pandas doc signed a form allowing DS to take motrin at mid-day from the school nurse on my direction) and stand your ground on the things that will be remembered in the long run. Start out as a team player and pick your battles. Honey works better than vinegar and establishing yourself as a credible, balanced mom in the beginning is important. So start with only a brief overview and try to keep conversations centered on the teacher's concerns, not the whole ball of wax. The disease is too complex to for that, especially early on in the school year.

Under helpful threads at the top of the forum, there's this link Explaining Western Blot tests: http://flash.lymenet.org/ubb/Forum1/HTML/022767.html WB for Lyme: http://www.anapsid.org/lyme/wb.html Understanding the WB: http://www.lymenet.de/labtests/brenner.htm Bands 31 and 39 are highly lyme specific and 31 is generally seen as an indication you've had lyme for a year or more. While the overall report may say "negative", most lyme doctors would consider your son's results, combined with the symptoms you report, suggestive of lyme. I would contact www.ilads.org, go to the "contact us" tab and send them an email, asking for referrals within a radius of your zip code. They will send you 3 referrals. You can also go to www.lymenet.org to the section "seeking a doctor" and post a request. It's a very large forum and you can get referrals as well as opinions. While you may be on the fence, it often takes 6-8 weeks to get an appt., so I would make an appt this week and then spend time researching (as opposed to the other way around). You can also ask to be put on a waiting list and often you can get an appt w/in 2 weeks if you can be flexible and go in short notice if there's a cancellation. MichiganPandas - At least one of the links I posted explains the reliability of these tests. As for why infectious disease docs don't use Igenex, there's a schism in the lyme world. Some doctors follow ILADS guidelines for diagnosing and treating lyme and others use IDSA guidelines. Most infectious disease docs fall in the IDSA camp, which doesn't believe in chronic lyme. To understand the schism and learn a great deal about lyme, I highly highly recommend "Cure Unknown" by Pamela Weintraub. You can get a cliff notes version of her story by reading this article http://www.astralgia.com/pdf/EL_Lyme.pdf You can get an Igenex test kit by calling Igenex. They will send you the kit and a FedEx return package. You get a blood draw and fedEx the kit back to them with payment. They then send you a document that you can use to submit your own claim for insurance reimbursement. However, you need a doctor to sign the order form. If you are seeing a Pandas doc, they generally agree to order the test. Neurolyme and/or bartonella (another tick borne illness) have many symptoms that mirror Pandas symptoms. Nearly every member of this forum started out on the Pandas trail. Rather than debate an either/or scenario, many of us have come to see it as a chicken/egg thing, with our kids getting lyme and then strep or the other way around, and the one-two punch was more than the immune system could handle, resulting in a cascade of autoimmune issues and chronic illness. But we've slowly seen our kids get better by expanding the treatments we're using to include lyme, other tick-borne illnesses, mold, and mineral/vitamin deficiency called KPU (kryptopyroleuria). You unfortunately have to do a lot of digging to find your unique puzzle pieces, but generally a good LLMD (lyme literate doctor) can help you much more than a traditional pediatrician. There is much to learn and it can feel overwhelming. As if Pandas weren't complex and controversial enough...now you're supposed to embrace lyme? It's a kick in the gut. But being on the right track for your child is the only way through the darkness. So lyme and these other things are worth exploring - to either treat or rule out. There's no single "right" answer. Just "right" answers for your unique situation.

I too would have a bias toward Storch/Murphy because of Murphy's involvement with Pandas research. Their group also uses Skype to conduct ERP sessions for those who cannot travel. I don't have details, but I'm certain a call to them would tell you the details. I'm all for ERP/CBT and in no way want the rest of my post to sound like I'm trying to dissuade you from pursuing a treatment program. That said, if you know your child has received real IVIG and has not responded favorably, there may be additional medical issues going on beyond Pandas. I'm not suggesting experts were wrong or that Pandas isn't a component. Only that it may not be the only component. I know that as part of the screening process, you had a CDC western blot for lyme. However, for many reasons, this is not a conclusive test and may be worth re-visiting with a different (Igenex) blood test. You may want to have additional testing on the immune complex system, specifically C3a and C4a complexes, which can indicate bacterial and/or biotoxin (mold) issues. It may be worth re-checking ASO and Anti-DNase strep titers. Or C3d immune complexes. There are other issues as well, and I'm no expert. I only bring these up as a suggestion that there may be more to investigate. ERP/CBT is an awesome way to help any child deal with OCD and anxiety issues. You learn tools that will help you for the rest of your life. However, with infection-triggered OCD, it seems therapy is less effective while the infection is raging, and only becomes helpful when it's combined with the proper medical plan. So I just wanted to throw out some food for thought. Good luck to your whole family. Regardless of which center you end up with, you may also want to ask what they offer in terms of sibling support. Sounds like your son might benefit from some experts who can empathize with his plight as well.

We do not use minocycline, but our LLMD and Pandas docs have all been ok with us giving multiple abx at the same time. We've given omnicef+bactrim+zith at the same time - no issues. Don't see why you'd need to space them apart, other than to be gentler for the gut. We give with meals to make it easier on the stomach and for convenience. But even if mino needs to be taken on an empty stomach, check w/your doctor to see if you can give it 30 min before a meal and then bactrim at end of meal. Personal opinion - a sprinkle of culturelle isn't enough. We didn't find great success with culturelle. We had better gut health with either sacc. boulardis or Theralac. Whatever you decide, one capsule of Culturelle is only 10 Bill CFUs - I'd shoot for 20-30 Billion ans many here use much much more. I also don't see any detox in your regimen. You may want to consider Alpha lipoic acid (ALA) or glutathione in the a.m. on an empty stomach (could be taken with the minocycline). Or milk thistle at bedtime with the probiotic. Or other detox like clay if you could get your daughter to drink it. We've found that supporting the body is just as important to recovery as having the right combo of abx - and it's very important in reducing the impact of a herx. All of this should be run by your doctor or qualified practitioner.

Just spoke with LLMDs office - was told you can take chlorella without concern for the timing. Best to take shortly before a meal, then ok to take abx after a meal. DS is supposed to take 30 pills/day - 10 with each meal. Was told that if you don't feel well, the thing is to take more, not less. We are supposed to taper up on the Core - 1 capsule twice a day for 2 weeks then 2 caps twice a day. Not sure if we're supposed to start the chlorella at full dose or build up. It's all being mailed to us from the LLMD office. Hopefully it will include "dosing for idiots" instructions. I'm nervous about a herx - we leave for the beach in 2 weeks - the same beach where my son had the worst week post-IVIG last summer. Am really really hoping to avoid deja vu. We also have a wedding, with lots of expectations for proper behavior. So I'm tempted to wait until we're past the wedding and maybe start Core mid-vacation. Things are pretty good right now. As I start to make my mental list of things to pack, it occurs to me that we can never travel internationally while my kids are sick. We'd never ever clear customs with case loads of pills! Philamom - I've read about chlorella causing diarrhea, I have to worry about constipation too?

That's what I'm thinking. Assuming it's the same as charcoal and clay in that you need 2 hrs between the binder and the abx. We can be creative for a few weeks, but when school starts, I'm going to need a plan that fits things in during a much tighter time frame. I'm perversely relieved with the KPU results. Dare I hope we've reached the end of our detective work and this could finally be the turning point? Or are we in for another round of ugliness if there's metals chelation that could set the whole inflammation chain reaction in motion again? I might actually consider the chlorella more important than the abx for a few months.

So if you're giving chlorella with meals, when do you give abx?

I know this has been discussed before but the search function isn't cooperating. So...KPU testing came back positive (don't have labs in hand yet). Mercury levels were also slightly elevated, so we'll be starting CORE along with chlorella - 10 pills each dose, 3 times a day (30 pills total). So when do I fit this in? Currently, we give abx with breakfast and dinner and give probiotics, vitamins, milk thistle at bedtime. Geez this gets complicated. Can't even think about what we'll do when school starts, but for now...any ideas?

It's quite possible you will see changes when you add another abx. If so, that would be great. If you don't and you still feel lyme is at play, then there are two "hot topics" people here are exploring as possible reasons for the stalling/lack of progress our kids are making. One is mold and the best introductions are here: http://www.survivingmold.com/diagnosis/the-biotoxin-pathway http://www.publichealthalert.org/Articles/scottforsgren/biotoxin%20pathway.html The other is a condition called KPU (which is a mineral/vitamin deficiency that leads to a heavy metals problem) or pyroleuria (same deficiency without the heavy metals issue). One primer on this is http://betterhealthguy.com/joomla/images/stories/PDF/kpu_klinghardt_explore_18-6.pdf One final possibility is the role of biofilms, which can protect the spirochetes from massive levels of abx. Plaque on your teeth is a biofilm of mouth bacteria. Very hard to eradicate once established. Same thing with lyme. Here's a very very long but fascinating discussion on biofilms (not lyme specific) http://bacteriality.com/2008/05/26/biofilm/ All this to say...you may just need the rifampin, or there may be other trails you need to investigate. As you know from Pandas, there's no cookie cutter solution, no simple answers.

Wendy, We tried this about 2 yrs ago - epic failure. How anyone is supposed to get a spoonful of waxy balls into their body is beyond me. I tossed the whole jar. Notta one made into DS's stomach. And I don't think I could've taken a spoonful either. You may want to call the company and see if they have suggestions. If not, then I think you should push to be able to return the unopened jars. You can also look up ColleenRN and PM her. Haven't seen her on the forum in a long time, but she's the one who told me about it - maybe she has ideas. Finally, coconut oil is a big source of monolaurin. If you google monolaurin and HIV, you can find some promising research. Maybe pursuing foods with monolaurin would be more productive. Jodie might have some ideas. Laura FYI - found a 2009 thread on a chronic fatigue forum where someone said taking Lauricidin caused heavy metals chelation and they had to stop using it. I know you were looking into KPU, so just something to ask the company if you end up calling them.

When we contacted a neuropsych, it was a $2000 deposit and she scheduled 4 months out. It was also possible the final bill would have exceeded the deposit. When we saw our first Pandas doc, we were advised to save the money. All it would do was evaluate the impact of the disease. it wouldn't tell us what was or wasn't going to be residual. On the other hand, the Igenex basic panel cost us @$200 up front, but then we submitted our claim to insurance and were reimbursed about 60%. So $2,000 vs. $80. You do not have to do more than the basic Igenex panel for starters. If results make you inclined to check for co-infections, you can use Specialty Labs, which accepts insurance. But it's rare to have a co-infection without also having lyme. So the basic panel is a good first, relatively affordable step.

Where is that LIKE button when you need it? So very very happy for your whole family!

The only two places I think of in New Haven is Yale and Toad's Place - which is a bar where you can hear semi-famous bands. Not exactly what you're looking for. You can walk around the campus or go to one of Yale's art museums or the crypts in Center Church. Try ctvisit.com for other ideas. There's also a huge IKEA store on the south side of the city.

This is the best intro to SAMe I've found but it's 12 yrs old. http://www.newsweek.com/1999/07/04/what-is-same.html After reading the article, I thought we'd try it, so I asked my LLMD. He didn't go into detail. He only said we could try it if we wanted but he used to suggest it for his patients but wasn't big on it anymore. He didn't elaborate. He said he prefers glutathione and ALA. I asked about NAC on the Pandas forum - April? maybe - and Nancy Mom with OCD son had some info she shared. You could post a similar question or PM her. We ended up not trying either for the moment, since we're waiting on KPU results before deciding next steps.

Vickie, So very glad to hear that he's not having any issues! Know you're probably holding your breath a bit, but this is so great! I hope it holds steady and the myco is quickly resolved. If not, I have no doubt you'll be on top of it. So happy for you! Laura