LNN

My Layman's understanding is that they are different. I believe the L-form is a cell-wall deficient form of Bb that I think of as "intra-cellular." Biofilms are cities of bacteria and possibly viruses. Many bacteria form biofilms (tooth plaque is a biofilm). Bb biofilms start when two spirochetes line up next to each other and interlace their flagella, like two hooks linking arms. They then wrap themselves in a goo. Other spirochetes line up around them. I think of it as french-braiding hair. More and more strands join in, forming a strong bond, with the goo made up of metals, minerals and other stuff I don't understand. These bacteria have cell walls. But the goo becomes hard and makes a fortress. Inside the film, the bacteria can share DNA - even with non-Bb cells apparently. The outer layer of the film is hard and generally resistant to abx. Here's a long but very good explanation of biofilms - http://bacteriality.com/2008/05/26/biofilm/ It addresses biofilms and illness about 1/3 of the way into the article.

DCmom is right. Accepting the illness, letting go of the expectations to be "like everyone else" (tho they also have problems - you just can't see them), finding joy in small things...all very important to your family's emotional health. That doesn't mean you accept things you can change, and many of the medical symptoms can be managed or eliminated. But it means accepting where you are in the journey and finding gifts, not just sadness. For all the soccer games lost, there are snuggles on the couch that can be cherished, for all the socks thrown aside because of their offending seams, there are lines of communication built (and ERP tools practiced) after the tantrum that can last a lifetime. It may seem impossible to believe, but there are many gifts you can nurture through all this. I have been exactly where you are now (aside from home schooling). It's a heavy load to carry. Because you mention things early behaviors that don't seem linked to full blown episodes, small "hints' if you will, you may want to step back a bit. A few years ago on this forum, we old timers were united in thinking all of our kids had this one disease called Pandas, one trigger - strep- and there was one magic key that would help them all. We collectively researched, some tried plasmapheresis and reported back, some tried IVIG, then repeated IVIGs, and reported back. Some kids got better and their parents are gone. Some of us are still here. Along the way, the group found other things beside strep that were making some kids sick: mycoplasma, lyme/tick borne illnesses, candida/yeast, mold, mineral or vitamin deficiencies (zinc/copper, B vitamins, D). Sometimes there was passionate and even hurtful debate. Sometimes there were "AHA" moments for some parents and they proceeded to find the missing piece for their kids. I know you were around for part of all this. What we have now is a forum with less clarity, a humble understanding that PITANDS/PANS is much more complicated and less homogenous than we once thought. Multiple causes of similar symptoms means multiple treatment options that will be better for some kids than other, depending on their unique issues. And unfortunately, it leaves a lot of parents feeling very adrift. Few doctors who look at more than once slice of the pie, conflicting advice from other parents and all you want to do is make your child better so he can have the childhood you always dreamed he'd have. From a medical perspective, I'd suggest you research the laundry list above and see if the symptoms associated with the illnesses strike a chord. There are blood tests you can do for all of them that may not be definitive but at least tell you whether it's a possibility. From a management perspective, I second DCmom's advice on ERP - a huge help regardless of underlying cause. And from a sanity perspective, try to believe that there is no deadline, no point of no return where your son will be permanently damaged. My son has been at these for 3 years now, and each year he has taken steps forward. I was once firmly convinced he had Pandas. I know believe he has other things going on, some things like a zinc deficiency, since toddlerhood that contributed to other insults along the way. But he is so so much better. I was just telling DCmom privately that it's hard to remember the really dark days now (and they were very dark). The bad memories fade. My son doesn't remember a lot of it. But we have a bond now and he has tools now that will stay with us for a lifetime. Cherish your son and be easy on yourself. Your love for him will carry you through and you will find answers. Along the way, just focus on the essentials of life and savor each hug and smile. Success will come.

I'm with you - I would hardly call a year of remission a failure. Many here would cut off their right arm for that! I would hear what he has to say, but all of the Pandas doctors seem to have different opinions and protocols. If one doctor's thinking doesn't sit well with you, know that you would be well justified in seeking another opinion and/or following your instincts. They do their best based on their experiences, but none of them has the market cornered on "the" answer for your child. I would see if your local doctor would do a rapid and cultured strep test, order ASO and Anti DNase B strep titers and perhaps prescribe a long course of augmentin. That would seem to be a reasonable first step in gathering additional puzzle pieces.

Some of you may have already seen this in the IOCDF newsletter. For those who haven't, this article may go a long way in swaying your local medical practitioners...Dr Jenike is one of the preeminent OCD specialists in the country. His compassion and commitment to his patients is renowned - he sees the sickest of the sick and has traveled to the homes of some who could not leave the house because of their OCD. Susan is an amazing mother, mountain mover and ERP practitioner extraordinaire (and an incredible human being). http://www.ocfoundation.org/default.aspx?id=2279&terms=pandas

I share your skepticism of doctors. Seen too much, learned too much. It's ironic you suggest I've found an open-minded LLMD, because I think I have, but my DH has been feeling badly for several months and got the brush off from our PCP. So he agreed to see someone with a more integrative approach, but didn't want to see my kids' LLMD because he "didn't want to automatically get diagnosed with lyme". Now, the LLMD has complained to me about how some patients come to him begging to be dx'd when he doesn't feel they have lyme. So I had to chuckle. I suspect DH is reacting because I've half-kiddingly told him his fatigue must be lyme (and we pulled a deer tick off him last summer before we were lyme literate and we didn't fight for a month of doxy). So he's going to a different integrative MD who will test using Igenex but will also look at other factors and causes. This doctor is not an LLMD and if Igenex comes back suggestive, I will push for DH to them see my kids' LLMD. So I understand your concern. But I think the key for any next step is to find a doctor you can have confidence in, regardless of their specialty. A rheumatologist has one pair of glasses, an infectious disease doctor has another. To some degree, you self-select any diagnosis based on your specialist. Here's an excerpt from an interview you might want to read. This woman has a practice in the DC area and is highly regarded in lyme circles. "Lyme disease symptoms are vast and varied. How do you diagnose Lyme, when all the symptoms can manifest so differently from patient to patient? Right. Well, I always tell my patients that the diagnosis is like putting together the pieces of a puzzle. There are a number of different things that all have to fit together, there isn't just one thing that can happen and make you diagnose the disease. It has to be a combination of factors. If the history is right, in other words there was some potential for exposure, and the lab tests, of course, play some part in this, although they are so often inaccurate. And, if the symptoms fit, the typical symptoms. And, there are a few things on exam that I notice, but these are not diagnostic of Lyme, they just add to the case for Lyme. Then, the two immune markers are also very important that we're using right now, in helping to decide whether it's a true Lyme case. Both the CD-57 natural killer cell count, and the C4A complement protein count are measured. And a high C4A and a low CD-57 make us even more suspicious of a Lyme case. Each symptom of Lyme disease taken alone is something that probably everybody's had to some degree or another, at some time in their life. It's the severity of the symptoms, and also the quantity of the symptoms that makes one get suspicious. Everybody has had fatigue, everybody's had headaches, everyone's probably had some pains here and there in their life. But when these symptoms become overwhelming and the person becomes incapacitated, then that's something you need to really look into. That must vary according to the individual. Do you see patients who think they have Lyme, but do not? I actually have had a few cases where I really did not think they had Tick Borne Disease. But, I have to say that usually, by the time they come to me, they're pretty well-screened. They've already been through every other avenue, they've had many other conditions screened out. And also they come to me because there's also a great, high degree of suspicion. So yes, most of the patients I see do have Tick Borne Disease. I have though on occasion seen people, and primarily when I was doing a combination of primary care and Lyme disease, I would see people who thought they had it, and I really did not think they had it. But I have to say most of the patients that come to me do have Tick Borne Disease, because there's a self-selection process going on there. " You can read the full interview here http://www.lyme-disease-research-database.com/ginger-savely-transcript.html

I don't think there's anything wrong with respectfully sharing a negative experience with a doctor, so long as that doctor's name isn't used. This is not a private forum. I frequently google a topic and get ACN responses as my first few "hits". So I don't think it's ok to name a name. But to share a generalized experience where someone can then follow up privately would be a valid post. I feel that the key is to do so in a respectful manner rather than a bashing. "My doctor does a poor job of returning calls" is different than "my doctor shows no respect or concern". Not saying you've said any of this - only sharing my personal opinion of where to draw the line. I'm not upset by your personal feelings toward lyme. We all need to follow what hits home and not spend energy on things that don't seem to hold answers for us. But I've always been struck by your inherent distrust of lyme doctors yet your embrace of a Pandas diagnosis despite a lack of clinical symptoms such as strep or elevated titers or satisfactory response to treatments you've tried so far. I have no idea if your kids have Pandas, lyme or something entirely different. It only strikes me that you apply a far higher standard to lyme than you seem to for Pandas or Tourettes. I struggle to understand why. I don't have any answers for you. I think in general, the members on the lyme forum have come here from the Pandas forum because Pandas answers didn't work for us. For the most part, we have lyme labs that suggest lyme might be part of the problem. Not everyone uses long term abx. There are many approaches in the lyme world. Some of us have found that other factors may also be at play, such as mold, zinc deficiencies, detox problems, viruses, metals...it's hardly a one-size, one label fits all forum. Will you find anyone on here who has complete remission? Probably not. Do you find those people on the Pandas forum? The people I know who've been lucky enough to get their kids stable don't post on forums anymore. I'm not going to try to convince you of any diagnosis or treatment. I don't get a finders fee for recruiting someone to "the cause". I can only offer my own experiences to anyone who finds them helpful. My kids didn't get well using Pandas protocols - and we tried them all. They are better with what we're doing now. Their behaviors show it, their lab work shows it, their school performance shows it. Are we done? Hardly. Do I know we're on "the" right path? I think we're heading in the right direction. But realize we may need to alter course here and there. As Aiden's mom said, there's no lab "rule out". You learn as much as you can and you try what makes the most sense. No one can give you any guarantees or single path to good health. I do hope you find something that brings you relief. No mom should have to go through the wringer you're going through.

PMd you

Soo glad the kids are on the upswing! Such a contrast to last winter/spring, eh?! Let's hope you never, ever have to go there again! As for you, probably worth coughing up the cash for an Igenex test so you can know for "sure". Too many maybes in the picture... IMHO...

Nancy - Don't you hate these "oh crud" moments when you read something you think is going to totally not apply and see your own story in every sentence? In reading Cutler's description of who's a good candidate for mercury poisoning, I see myself as a walking mercury time bomb! Won't bore you with why, but so many "yes" check boxes that DH was floored. It makes you wonder if we're just on the bleeding edge of medicine, learning things ahead of main stream doctors, or if we get so PTSD that we keep digging and can't let sleeping dogs lay. Susan, for lots of reasons, based on family health factors, it makes sense that it would be a precursor for my kids, not caused by lyme. But would love to be wrong. And don't think this is the case for everyone. Let's hope your DD gets to leave this behind her.

NMom, I'm so sorry for all you've been through. You're right - severe side effects should be explained and I was not aware of some of the ones you've discussed. Thank goodness his sugar seems ok. The one thing I wanted to chime in on was that you've also had lyme on your radar. Though I'm not suggesting any of this is related, I would do your best to write down all the symptoms and file them away. Things like being short of breath can be something a lyme/babesia patient would describe as air hunger. Frequent urination might be a prednisone thing, could be a Pandas thing, you'll find some people say that lyme can cause it, others will say mercury toxicity can cause highly increased urine production...someone posted a thread about all the symptoms yeast can cause and it looks a lot like Pandas. Similar laundry lists with many of the same symptoms can be found with lyme, metals, chronic fatigue, myalgia, metals, etc. I'm in no way trying to diminish the panic and anger you're feeling. Totally justified. But write it all down and try not to fit it into one neat box just yet. This basket of symptoms could have many causes - the prednisone may have been a trigger but the cause could be something you haven't yet explored. Early on, I found a disease that seemed to fit 95% of my son's symptoms - it was called Pandas. I assumed the other 5% were just a unique Pandas presentation for my son or something the research papers hadn't seen enough of to include. I now feel those outlier symptoms and events were clues that there was more to the picture. Not that Pandas wasn't a piece of it, but that it wasn't the only piece or even the biggest. I got too married to the one diagnosis, the belief that one thing would be the answer. And in the process, we lost a lot of time and money sticking with things that ended up not moving us forward. Your son's adverse reactions are huge clues to something. But try to give yourself a few weeks and look at a few other possible causes. In panic mode, we moms like to find answers quickly. But in doing so, we can sometimes come to incomplete conclusions. Try to let the clues lead you and realize it may be more than one thing at play. Not something you want to hear right now, but something I wish I had done. I hope today is a calm one and you start to see improvements. You and your son are in my thoughts.

Agree with Smarty. We see a DO (Dr of Osteopathy) who is an MD with one additional year of integrative training. Our DO treats lyme and is considered an LLMD (lyme literate MD) but his wife is a DO who only treats other issues in a holistic way. She studied under Weil. Contrary to what some fear, my own experience is that my LLMD does not automatically see lyme everywhere. He has pursued many other ideas and lyme is only a part of our picture (like you, my DS has turned out to be a bit complex). So I would search using terms like "integrative" "complimentary" "CAM - complimentary and alternative", or look for an LLMD or DAN doctor. Given the possible complexity you mention, just make sure you see an MD or DO and not a naturopath. You may need someone who can prescribe medications and my understanding is a naturopath can't do that. If you post the general region of the country, some may be able to offer specific suggestions.

I guess my first question is how you're feeling. Do you have symptoms that suggest you should pursue? As I'm now reading up on heavy metals for DS, I see myself in the literature. Tons of things match. But for now, I feel pretty good and tho I may be a walking time bomb, I'm ok right now. So I'll focus on the kids and then, if/when they're finally done with pills and doctors, I may revisit my own situation. But with metals, if they're stored and not causing problems, you can back-burner the issue without making it worse (tho upcoming menopause may change that). But with an active infection of lyme & co, you may not have the same luxury. So I guess it depends on how you're feeling. If it's still bugging you in a few weeks, maybe consider an Igenex test if you think the GP would humor you and sign off. It could be that you're positive for those bands not yet tested and that would change the picture considerably. BTW - how are the kids doing?

Kathy, My theory - and it's only a theory that will evolve - is that my son had KPU/pyroluria first, then lyme. In our case, it may be a genetic, life long condition that will always need to be treated with a zinc supplement. In our case, DS had odd things as a toddler. An eye blink for 3 days when he was 2, odd episodes of mood dysregulation a few times a year that would last about a week, inability to do age-appropriate puzzles, small delays/deficits that only a neurotic mom would worry about. Nothing that screamed we had a problem, things I may have downplayed if he were my second child and not the first. It's the stuff you sometimes see other Pandas parents talk about - sudden full blown onset with strep, but oddities in toddlerhood that stayed in your memory. He was always the first kid to catch a cold and the last one to get rid of it. My son also had a very odd reaction to zicam once and developed choreiform movements that stopped as soon as I stopped the zicam (zinc). And I needed zinc supplements as a kid. So when I read about KPU, it really struck a chord and I wasn't surprised when he came back positive. My working theory is that he has always had pyroluria and as Susan said, Klinghardt speculates that if your body doesn't have enough zinc, it grabs heavy metals as a poor substitute. So as we gave flu shots (which continue to have thimerisol in them) and as he was exposed to mercury, his body stored it instead of eliminating it. When he contracted lyme at the end of kindergarten and then strep at the beginning of 1st grade, it overwhelmed his body and sent his immune system into disarray. He does not show an innate immune deficiency. I'm speculating it's the genetic KPU that makes it hard for him to fight illnesses. When we got aggressive with lyme treatment (tindamax), DS was overwhelmed and couldn't handle it. It told us something at the base level was wrong. We tested HLA DR genes and minerals and KPU. KPU was the one that held an answer for us. Now that we're giving the KPU doses of zinc supplement, his immune system is working better but he may also be dropping some of the mercury he's been storing. Last week, he had some symptoms that suggested that might be happening. So in my story, I think its KPU first, with possibly some mercury problems developing with it, then lyme, then strep, then years of investigative work and only partially successful attempts to unravel it all. I can only hope we've gotten to the source of the problems and can start to address those. Not sure I have the strength to learn about and treat much more. As S&S said, each one of these things is more controversial than the next. Pandas is at least discussed in the Saturday Evening Post. Lyme is at least recognized and hotly debated. KPU and metals are relegated to the fringe of the fringe. The old me is thinking I've gone completely over the edge. But my son is better than he's been in years. I'll take that trade off any day.

Thanks, Nancy. The thing that rattled me most was that I listened to an hour audio interview with Andrew Cutler and read the first 40 pages of his book Amalgam Illness on google books. He is adamant that using a chelator only once a day does more harm than good. He doesn't feel chlorella is a strong enough binder and advocated ALA and/or DMSA every 3-4 hours, even in the middle of the night, for many months and possibly years. He focuses on adult poisoning, not kids or lyme or kpu and I'm not sure how any of that affects the overall approach. Our LLMD Rx'd DMSA once/day but without having a form grasp on the topic, I haven't picked up the script yet - at $3/pill (with insurance) it's pricey and I don't want to screw up the good place we're in right now. I do know that when we did one large DMSA dose at the start of our heavy metals challenge, I saw some uptick in agitated behavior the next day. LLMD said he hadn't had anyone else report that before but DS is well known for not responding the way others do. So I can see a need to address mercury in our situation but only with a careful plan (even DH is on board, which is both helpful and scary). I could probably bring myself to do ALA several times/day (currently only giving in the a.m), but even that, with school and the bus ride consuming 8 hours, no way is 4hr intervals practical. I'll see what I can find by Holmes and probably come back to you with many more questions. (oh, for the good 'ol days when I worried about "just" Pandas!)

You're a few weeks ahead of us in KPU treatment, but yes, we've seen the same things. Last week (Week 5) DS9 developed swollen lymph nodes in his neck and groin and complained of foot pain, ankle pain. The left side was particularly swollen. He also developed "bee-sting" sensations in his legs and feet for about 3 days. And he too has sand paper bumps on the backs of his arms and thighs. About 5 days after all this started, he also came down with a cold (sister had it a few days before him and I have it now). So hard to separate what's what. The cold is now gone and so is the lymph swelling. Foot pain is still there a little but better. No more stinging sensations. The skin bumps are better but not gone. I did bump up the chlorella a bit. I also found a place locally that teaches chemo patients how to do lymphatic massage - and they take insurance (what a novel concept!) About $100/visit. But the woman said one possible "side effect" is that it stimulating lymph can cause a flair of symptoms so she wanted me to run it by our LLMD first. He said yes, probably will cause a flair and it was up to me. Am thinking I may go in a week or two and learn how to do it and maybe by doing it every day, it will prevent future swelling and help the immune system long term. IDK. LLMD also said (as did Jodie) that metals could be a factor behind some of this. DS has tested slightly elevated for mercury. I need to do more research before I move forward on this, because there's tons of conflicting info out there and all I walk away with is the knowledge that chelating improperly is worse than not chelating at all. So I'm in research mode. Anyone have any good input on chelation?

The Shoemaker info can be found here: http://www.survivingmold.com/diagnosis/the-biotoxin-pathway and the same info presented here - but I found it easier to understand http://www.publichealthalert.org/Articles/scottforsgren/biotoxin%20pathway.html Here is a very long but comprehensive discussion on biofilms: http://bacteriality.com/2008/05/26/biofilm/ It's a little overwhelming - maybe read the first few paragraphs then scroll down to "biofilms and disease" about 1/4 of the page down.

Very, very insightful! Can't offer much more than that, except that the positive spin on things is that this forces you to re-prioritize. So tempting to say you'll treat yourself once you get your child well, but this forces you to treat yourself at the same time, because without a healthy you, there can't be a healthy child. it may also keep you from expecting too much of yourself. This is about baby steps. About cherishing each blessing. In a way, it is like stage 4 cancer in that it gets in your face and makes you stop to re-assess. But unlike stage 4, it carries so much potential for a healthy life in the future. S - thanks for the link - very helpful on the C3a/C4a confusion. I think you should do something ridiculously silly and fun with your kids this afternoon. Let them do your hair or put on your makeup or dance in a rain storm. Cherish them and know you'll get well together.

Like you, we had an older child with clear cut issues and a younger one with "hmm..." symptoms. She stayed just under that "need to take action" radar for about 2 years while we dealt with more immediate problems with the older one. One thing that helped us was some quantifiable blood work - C3d immune complexes that were elevated (indicator of general immune system activation), C3a and C4a immune complexes (sometimes rise with lyme and/or mold), vitamin and mineral panels(deficiencies can cause many issues), CBC panels, yeast/candida blood work, etc. DDs blood work "proved" that her immune system was reacting to something. Over the course of a year, her C3d went from 25 to 50something to 96 (above 8 is high). Now, after 8 months of treatment with an LLMD, her C3d has dropped down to 23. Her C3a was very elevated (a possible indication of lyme which coincided with an indeterminate Igenex report) and her C4a was normal (often coincides with a reaction to lyme or mold). Her ASO and Anti-Dnase titers were normal. Her eosinophils were normal, lessening the picture that some sort of food allergy or respiratory infection was causing her reflux... No single blood test confirmed a specific infection, but it did give me that quantitative data to say that her behaviors were more likely driven by a physical cause rather than just fringe kid behavior. When we put her on abx, her behaviors responded and calmed down very quickly, further confirming that link between behaviors and infection. So I'd suggest discussing some blood work with the doctor on your team who's most Pandas supportive. It may help clarify that gut feeling you have.

If all of us step back and put on the glasses we once wore pre-illness, and came to this site and lurked, we'd be thinking that every single member on here is stark raving mad. If the old me were put in a room with the current me, the old me would be very very scared! What mother in her right mind would put her kid on long term antibiotics, or a month of steroids, or drive 9 hours to put him into the ICU for 3 days of blood dialysis, or spend 2 days infusing donor blood products into his veins and being happy that he only threw up for one day afterward instead of a week, or tell him he can't play XBox until he drinks some nasty smelling herbal tincture and takes his 46 pills? I don't think we need to worry about what newbies think or how they'll be influenced, whether something is phrased with an "in my experience" or stated as fact. Seriously, any newbie thinks we're all raving lunatics! And most likely, they've come here from the Pandas forum, so by now, they're absolutely certain we're all mad. And they're very worried that they're mad too! But we're here because our kids are sick and whatever we've tried up to this point hasn't given us enough relief to get the h**l off forums. Whether someone chooses a strictly allopathic route (and I don't use that term in a negative way) or homeopathic, or some blend of integrative, the extremes we've all gone to on those routes is undeniable. The reason we all stay on this forum is because no "normal" person can understand us anymore. You have to live the horror to understand how any of us got here and why we try the things we try. We all have very sound reasons to hold the personal beliefs we hold. And those beliefs are likely going to change over time. Trudy said it best. We shouldn't argue like this. It does nothing to help a newbie (they've long ago left this thread) and it divides the very people who can offer help. It takes weeks for the forum to put this sort of conversation behind us. So few people understand me as it is. You nut jobs are all I have left! If you all stop speaking, my poor husband will have to bear the burden of my needing a sounding board all by himself. I can't let that happen! Can we bring this back to the original question of whether those who've chosen multiple IVIGs have seen benefits or reached a point where enough was enough? Did it live up to the hopes you had or in hindsight, would you have done things differently?

I would take pictures if you can. You may also want to go to www.drjoneskids.org and view the rash images on the site. It may very well be hives you're dealing with, but to develop hives from the zith after being on it for so many months would be unusual. Could be that the addition of omnicef has provoked an allergic reaction or else provoked a tick-borne rash (I am not saying every kid with a rash has lyme - I only know this issue has crossed your radar in the past so I wanted to mention it as a possibility so you don't look back a year from now and wish you'd considered it).

Whether a dose is considered treatment dose or prophylactic dose depends on the child's weight and health status. As Tami pointed out, the term prophylactic is misleading, because some Pandas kids may stay on a "treatment" dose for quite some time with the intention of preventing any flairs. So I wouldn't get too hung up on the terms. Regardless of dosage, the drug is identical. The terms prophylactic vs. treatment don't relate to difference in the composition of the drug being given. I strongly urge you to NOT pulse any antibiotic every 4th day. In terms of germ resistance, this is one of the worst things you could do. Germ resistance develops when germs are exposed to a low dose or short term dose of something that can kill them. If not given in strong enough dosage or long enough duration, the weak germs will be killed but the stronger ones will survive and pass on their resistance ability to their offspring, making that abx useless against that strain of germ. That's why people are urged to complete their abx script even if they start feeling better. You need to make sure the whole colony is destroyed, especially the longer surviving, stronger members. To pulse one dose every 4th day would encourage resistance, not guard against it. Pulsing is sometimes used for some infections of germs with long life cycles, such as lyme, which has a 4-5 week life cycle, or for biofilms, which also seem to have longer life cycles. But it generally isn't used for shorter life cycle bacteria such as strep. Zith roughly stays in the blood stream for 36 hrs, which is why you can get away with only 1 daily dose instead of 2. But I would not pulse in the way you described. If you feel your child should be on some sort of abx for a period of time, I would get an appt with a doctor knowledgeable about Pandas and the treatment strategies that are generally used. Probiotics should always be given when someone is on abx for any period of time, taken 2-3 hours away from an abx dose. This will protect her system far better than an incorrectly timed pulsing plan.

Let me know what you find our re: costs. DH is headed to an integrative MD in a few weeks for chronic fatigue etc. Had a tick bite last summer before we knew the nastiness of lyme. Our GP only gave 2 days of doxy initially and then after I kept nagging for a week, gave another two weeks. So an Igenex basic panel is less than ideal for him. He hasn't been on abx, so a culture is very intriguing if affordable.

Michael, Thanks for your perspective. That makes it a little clearer. I hope your recovery is progressing well. Did you go back to work today?

Thanks. I suppose that's to make sure enough of the buggers aren't in cyst form.

Where does it say you need to be off abx for 4 weeks? Can't find that.