LNN

I'm in New England, so unable to help. But if no one here gets back to you, you can go to the "contact us" tab at www.ILADS.org and they will email you doctors who are members of ILADS that are closest to you. You can also post on www.lymenet.org under their "find a doctor" section and get at least one or two responses. You should specify whether you are looking for yourself or for a child. Best of luck.

I found this yesterday and thought I'd share it...http://www.goodsearch.com/ It's a search engine that donates a small amount to the non-profit of your choice every time you use their search engine or buy something through their portal. So a Pandas group, IOCDF, maybe ACN if Shelia register's with them...it won't amount to huge donations, but if you search a lot, it could help while not costing you anything (since we all have such full piggy banks thanks to these illnesses). So FWIW...

I found this yesterday and thought I'd share it...http://www.goodsearch.com/ It's a search engine that donates a small amount to the non-profit of your choice every time you use their search engine or buy something through their portal. Time for Lyme, Darlene's childhood lyme non-profit, a Pandas group, maybe ACN if Shelia register's with them...it won't amount to huge donations, but if you search a lot, it could help while not costing you anything (since we all have such full piggy banks thanks to these illnesses). So FWIW...

Two thoughts - first, on the zoloft, one "experiment" is to lower the dose instead of raising it or adding other things. In Pandas kids, SSRIs can activate, meaning they can increase the symptoms they're supposed to minimize. Lowering the dose often helps. If you know it's not helping at the current dose, you can try lowering, either as a step toward weaning completely or to see if less is better. Second, you may want to check in with your daughter in some way to see if OCD is behind the defiance. Being so busy, it's possible OCD is telling her things and her fears are coming out as anger. We found detox helps with rages as well. Chlorella to sop up toxins, ALA/glutathione for brain anti-oxidants, milk thistle for liver...and on bad days, Aleve or Motrin. I sear it's taken that anger down very several notches very quickly. And you should go cry - you should definitely make time for it. Keep it in and it will eventually grow and kick your butt. I speak from experience on this one.

We had UHC for a year - HATED them. They balked at covering a $48 annual lab ordered by my OBGYN because the doc sent me to a local lab (that works with every other insurance plan I've ever had) instead of Quest. They would've covered the same lab test if I'd used Quest. Who the heck thinks they need to make sure a particular lab co. is covered? Shouldn't it be based on the test itself? Even if I had to pay the lab directly and then had UHC reimburse me if they didn't have a working relationship with that lab - that's how my current insurance handles Igenex. I pay Igenex and they reimburse me. I told UHC I'd send in the $48 but they'd never ever have my business again. I checked all my paperwork from when we did Pex, which was covered by our insurance co. (NOT UHC) But there are no diagnostic codes anywhere. I do recall the admin at Dr L's office spending an hour on the phone with insurance the day prior to pex, trying to guess the magic code. Somehow, they got it resolved and we got pre-certified. Maybe someone at your doctor's office could call Dr L's staff and have a similar conversation? Doesn't guarantee success, but it would be a conversation between two people who work with insurance billing all the time and they might be able to share wisdom you and I don't have. Only a thought.

For a more detailed explanation of biofilms, this article delves into the ins and outs http://bacteriality.com/2008/05/26/biofilm/ There are treatments in the lyme protocols that focus on biofilms, but it's a slow road and should only be done under the guidance of an experienced practioner. If you come to believe that biofilms are an element of your daughter's situation, you may want to consider consulting with an LLMD who subscribes to biofilm protocols (not all do). This would also seem to support the argument to remove your dd's tonsils, wouldn't it?

:D :D Nancy, Sooooo happy to hear the good news!!! Like watching a friend summit Mt. Everest. Such hard hard work and so much advocating. None of it gets conveyed when you try to put 8 years into a few paragraphs. The endless nights of OCD holding your whole family hostage, the tears, the fears, the endless times you didn't know how you'd pull thru or if he'd get to the end intact. And now...he's becoming the man you always tried to nurture, feeling the joys you always wanted for him. Shedding a tear of happiness for you Laura

There are blood markers for testing your genetic susceptibility to mold tolerance - the gene is HLA DR. Having certain variants of this gene make it difficult for your body to handle mold toxins. In the same way ragweed is in my backyard and doesn't bother DH but my eyes are itchy. You can have mold where you work or live and some people can handle the toxins and others can't. If you have a mold susceptibility and have a mold environment and also have other immune-challenging illnesses, such as Pandas, lyme, chronic viruses, etc., then your body can struggle to handle it all. Integrative doctors talk about bucket filling - you can handle a certain amount of illness, but add too much and it overflows. Certain genetic markers mean that person has a smaller bucket when it comes to certain toxic loads. The other markers you can test for are inflammation markers that typically show up with chronic exposure to mold and/or lyme (and probably other things - but these are the illnesses that the gurus see most in their practices and that's the lens thru which they view things and therefore write about). The mold expert is Dr Shoemaker. Excerpts from his website: The Biotoxin Pathway Stage 1: Biotoxin Effects It all starts when a person is exposed to a biotoxin. In most people, the biotoxin is 'tagged' and identified by the body's immune system and is broken down and removed from the blood by the liver. However, some individuals do not have the immune response genes (HLA-DR genes) that are required to eventually form an antibody to a given foreign antigen. In these cases the biotoxins are not 'tagged' and remain in the body indefinitely, free to circulate and wreak havoc. Once present in the body, the biotoxins begin to set off a complex cascade of biochemical events. The biotoxin binds to surface receptors (Toll receptors and many more) in nearly every kind of cell in the body. This recognition and binding of the biotoxin causes a continual upregulation of multiple inflammatory pathways, including production of cytokines, split product of complement, and TGF Beta-1. Biotoxins also directly affect nerve cell function, which is one of the reasons that the symptoms and visual contrast sensitivity (VCS) test are so useful in diagnosis. Stage 2: Cytokine Effects Cytokines in turn bind to their receptors, causing release of MMP9 in blood. In the brain, cytokines bind to the leptin receptor, preventing its normal function in the hypothalamus. The blocked leptin receptor will no longer create the initiation of steps that lead to production of alpha melanocyte stimulating hormone (MSH). Elevated cytokines can produce many different symptoms including: headache, muscle ache, unstable temperature and difficulty concentrating. This problem is the disastrous effect of MSH deficiency. High levels of cytokines can also result in increased levels of important compounds such as I-1 and clotting factors as shown by a von Willebrand’s profile. Of importance in cardio vascular health, MMP-9 delivers inflammatory elements from the blood into sensitive tissues and can combine with PAI-1 to increase clot formation and arterial blockage. Stage 3: Reduced VEGF The elevated cytokine levels in the capillaries attract white blood cells, leading to restricted blood flow and lower oxygen levels in the tissues (we call this capillary hypoperfusion). Reduced VEGF leads to fatigue, muscle cramps and shortness of breath. Stage 4: Immune System Effects Patients with certain HLA genotypes (immunity related genes) may develop inappropriate immune responses which may include antibodies to: gliadin (gluten sensitivity), actin, anca (think ulcerative colitis), cardiolipins (affects blood clotting), and more. Most devastatingly of all, the complement system becomes chronically activated resulting in high levels of C4a. Stage 5: Low MSH Reduced MSH production results in yet another set of problems and symptoms. The production of melatonin is reduced which results in sleep problems. Endorphin production is suppressed which leads to chronic and sometimes unusual pain. Lack of MSH can cause malabsorption or 'leaky gut' which further weakens and deregulates the immune system. White blood cells eventually lose regulation of cytokine response so that opportunistic infections may occur or recovery from infections is slower. Stage 6: Antibiotic Resistant Staph Bacteria Reduced MSH also allows resistant staph (MARCoNS) to survive in biofilm on the mucous membranes. These bacteria further compound MSH deficiency and the problem by producing exotoxins A and B that cleave MSH, further decreasing the MSH levels. At this point, the downward spiral starts to perpetuate itself. Stage 6: Pituitary Hormone Effects Reduced MSH can decrease pituitary production of antidiuretic hormone (ADH) which can lead to thirst, frequent urination, neurally-mediated hypotension (NMH), low blood volume, and electric shocks from static electricity. While sex hormone production is often down-regulated the pituitary may upregulate the production of cortisol and ACTH in the early stages of illness, then drop to abnormally low, or low-normal ranges later. http://www.survivingmold.com/diagnosis/the-biotoxin-pathway This paper explains much of the same info but I found it easier to understand: http://www.publichealthalert.org/Articles/scottforsgren/biotoxin%20pathway.html I tested my son's HLA DR gene suspecting he would have trouble with lyme detox (25% of the US population has this variant, which is why the lyme vaccine failed in 2001). He was ok for handling lyme but showed a genetic susceptibility should he ever be chronically exposed to mold. This doesn't mean we have a mold problem. Only that he was less able to handle mold if it were around. On the hottest day of July, I made my poor husband rent a UHaul truck and take 10 years worth of clutter, mildewed boxes, everything in our basement - to the dump. He was ready to kill me. It made no obvious difference in my son's health but DH is now very proud of his basement! What did make a difference for my son this summer was testing him for pyroluria and starting zinc/b6 supplements. Certain minerals and vitamins also play a role in immune health and inflammation regulation. For us, this seems a better fitting piece of the puzzle. You can also buy home test kits (rather unreliable) or do something called ERMI testing (somewhat expensive) or consult with a mold remediator. I don't have experience here and you'd need to post on the lyme forum. But I would start with these blood tests to see if it's something that raises a flag. My son some of the markers on Shoemaker's list come back abnormal, but most were the markers that can be elevated by either lyme or mold and we know he has lyme. However, it all comes back to Nancy's point, which I entirely agree with. It's all about unregulated inflammation, likely triggered by a microbe or the toxins that microbe releases. (or more than one microbe). Find the source(s) and I personally believe you can put out the fire. I'm not at all against treating symptoms in the meantime, in the way that seems to best fit your situation. I'm just not content to accept a permanent condition - a permanent susceptibility, yes. But permanent condition, no. JMO

Only in the sick little world of forums would it be appropriate to reply to the "I have Bartonella" comment with "Yeah!" - in that you can get treatment and it explains things for you. Very glad DD is starting slow and with a "fix the foundation" approach. That's great! I think we've done things backward in many ways and am a little jealous As for herxing together, think of it as training for when you're both PMSing at the same time in 10 years!

Thanks for posting! The only thing I didn't like was how they downplayed the possibilities at the end. I think in 20 years, this will be such an obvious concept to doctors...I just wish we were there already!

Like others, I can list several things for liver support (ALA, SAMe, 5-HTP, Glutathione, NAC, Milk Thistle) but they are all supplements. What is the GI doc's objection to supplements? I'm not well informed about what an elemental diet is or what is or isn't allowed. Is it possible to have the two docs speak to one another?

There is a growing collection of research to suggest that some TS cases are indeed infection-based. There are several other infection-based things beyond strep that can trigger tics. Lyme, Bartonella, mycoplasma, mold (tho that's not infection based). If you're so inclined, these things can be tested for with blood markers. But it depends on your gut. Some people are ok with adapting to life with tics and others feel driven to find a trigger and eradicate if possible. If you'd like a list of things you can test for, let me know. I think it depends on what you've tested for already and what co-morbid symptoms you may have. IMHO, the more co-morbid stuff you have going on, the more likely it is that there's a microbe involved. But that's only my opinion.

My sentiments exactly. We have a similar history/experience, except we did 1 pex, 1 IVIG, 2 steroid tapers - with no lasting remission. Treating lyme, bartonella and the following the trail is has taken us on has been life changing - for the better. Not an easy trail, not a straight one. Not one I readily embraced. And certainly not the trail that every sick kid should follow. But the key is treating the correct infection with the correct treatment for your child. Not being married to one label over another, one treatment over another. It is finding a needle in the haystack. It is exhausting and expensive and wickedly confusing. But the proof is in the pudding. When you finally find the right label and treatment, you have a good shot at getting not just your sick kid back, but your whole family. You're probably cringing a little because many of the responses are from lyme families and not the Pandas families you were looking to for support. For your immediate steroid decision, I personally would not do it again, but the two times we did it did give us respite and it probably did no lasting harm, other than to delay treatment. But I can't imagine what your doctor is thinking it will prove or why she would want to do it. Best of luck with your decisions.

From your brief description, it's possible the infection isn't cleared and I'd personally do more aggressive antibiotics for at least a month before considering IVIG. I'd also test for other infections during this time. An active infection (of strep, mycoplasma, lyme, etc). will hinder the effectiveness of IVIG and you may not get lasting improvement until the body is infection-free. If you decide to test for lyme, I strongly recommend using a lyme lab, such as Igenex. Standard labs don't look at the lyme-specific markers (for reasons too long to explain in this post) that specialty labs look for. We have done it all - Pex, IVIG, steroids, CBT and ERP therapy. Until we treated the underlying causes, the big gun treatments didn't give us lasting remission. I would hold off on steroids until you've tested for other infections. They did give us a great window of reduced symptoms, which was a break the family really needed. But it didn't last and may have helped the infection. I know how frustrating this is trying to work with your local medical professionals. You may want to consider either an integrative doctor, a lyme-literate doctor or a Pandas Dr who's willing to test/treat beyond the traditional norms of strep. Best of luck with your decisions. It isn't easy, no matter how old they get.

double post

Yes, read the helpful links section for the articles that explain the bands. We're treating for lyme with Bands 31, 34, 39. In my own experience, when my son has badly herxed from lyme treatment that got too aggressive, he looked exactly the way he did when he had Pandas immediately after 2 confirmed strep infections. In his case, the symptoms overlap immensely. The herx brought OCD, tics, adhd, no impulse control, dysgraphia, urinary frequency, brain fog - there was no choriform movements with the herx. But other than that, I was hard pressed to say it was any different. I'm not a doctor, but I have to strongly, strongly disagree that neuro symptoms aren't caused by lyme and you can find a great deal of research backing that up. Just go to Columbia University's lyme center and Dr Brian Fallon's research on neuro lyme. Baronella is widely suspected when neuro issues are predominant in a lyme patient. Whichever doctor told you it wasn't from lyme is just not well informed on the topic. Now, whether that means you should ditch Pandas in favor of lyme, that's something only you can decide once you've read enough and put it in your own context. Some members do both a lyme protocol of multiple ab and IVIG for their lyme kids. Some stop the IVIG or never did it to begin with. If you've come to this forum, I'm guessing something is causing you to look for answers. I try not to give an impression that any advice I have is "the" answer for you. My only guide is that when we tried all the Pandas treatments (Pex, steroids, IVIG, long term single abx) and DS didn't stay well for more than 2 months at a stretch, didn't follow the "script" and stay in remission the way he was supposed to, then it meant something was still undiscovered, untreated. That's what led us to lyme and bartonella. And when that got us further, but not completely there, we looked eve further and discovered a zinc deficiency that was hindering his immune system's ability to fully fight. So we're still at it, but much further ahead than we were when we were on the Pandas trail. So my only advice is that if you have nagging doubts, if you didn't get what you'd hoped for with IVIG, if something you read about lyme or bartonella or babesia resonates with you, then I think pursuing treatment with an experienced LLMD would be a reasonable next step. However, if the doc you are with now (the one who wants to treat the babesia) is not an LLMD, I would encourage you to set up a consult with one. My own experiences with well-meaning but inexperienced doctors trying to treat lyme gave us frustrating results. It's too complex to not see someone who does this every day, especially with kids.

We've been on this road for 3 yrs. My son tested completely negative on a standard Western Blot lyme test but had many positive bands on an Igenex lyme test (which is a specialty lab that looks for markers other labs don't). It wasn't until starting a lyme/bartonella protocol of multiple antibiotics that he turnd the corner. As for the rages and cognitive behavior therapy, I would use the search bar in the upper corner and search for old conversations, putting "cognitive behavior therapy" in quotes or "erp". Here's an intro thread http://www.latitudes.org/forums/index.php?showtopic=7056&st=0&p=56657&hl="edgar"&fromsearch=1entry56657. if it strikes a chord, you can send me a PM and I'm happy to discuss what we did and maybe give you additional ideas. Rages used to be a huge issue for us. CBT helped a LOT.

I'll take a stab at answering your question by starting with a very big caveat - I am not "in the know" about the politics and philosophies of the various lyme organizations or the big name doctors. So I'm not in a position to speculate about any agendas or biases that anyone involved with the conference may have. I do have a lot of respect for Time for Lyme and the research it funds. It was the group that funded Dr Newell's research on lyme that then connected her with some people who started to share what they know about Pandas. If I could make the trip, I'd go just to hear her speak. TFL also funds a lot of Dr Sapi's work at Univ of New Haven, which has come out with some good stuff. I don't know as much about the work coming out of Columbia. Of the brief readings I've done of Dr Fallon's work, my only "gripe" - and that's too strong a word - is that, as with any professorial writings - it looks at a problem with a very narrow, pre-defined lens. That's certainly appropriate for research. But it tends to get people focused on a very narrow view of the whole disease. That somehow, if you don't fit the research definition, you don't have the disease. If you have outlier symptoms, you don't have the disease. I think micro-organisms are too complex for simple definitions. As we've seen in the Pandas world, it's the collective voice of parents who've gotten the researchers to broaden their definition of the disease so that it's now more of a patient-driven definition of symptoms rather than a petri-dish driven one. I sometimes feel lyme research in general misses the mark by being too narrow and not making enough room for outlier clinical symptoms that are shared by many patients. Like Pandas, too much time has been wasted on the need to "prove it exists" instead of getting on with the business of developing practical, affordable treatments. I look at the group of families on this forum and picture a Venn diagram. One circle has a lyme label. Other circles are labeled with "mold", "viruses", "parasites", "vitamins/minerals", "genetics", etc and when you do research, you can only look at one circle at a time. B ut in the real world, patients live in the overlap between multiple circles. So you can go to a conference that focuses only on lyme and learn a lot about spirochetes. But you can also be left feeling a little disenfranchised because maybe you don't have "classic" lyme. That can cause you (not you specifically - the "you" in general) to think lyme isn't your problem because you don't see yourself described in the presentations. What's more likely is that you fit in that overlap with lyme and something else contributing to your problems. What I like about bigger conferences - such as autism one and ILADS - is that you have both clinicians and researchers presenting their experiences and discussing co-morbid things and various treatments that produce a cross-pollination of ideas. It's more of a two way dialogue rather than researchers presenting a lecture on their findings. It fosters an evolving definition of the patient's problem rather than an academic view of an organism. I'm not knocking this conference or anyone associated with it. I know there are both clinicians and researchers presenting. As I said, I don't know much about the people or sponsors. So I guess I'm not really answering your question. If I lived in the area, I'd go, just to learn more. But it would be with the understanding that I'd only be getting exposed to a portion of the things that have been relevant in our personal quest. That there's more to the picture than maybe any conference can cover. PS - for anyone going to the October ILADS conf - Saturday's schedule -please let me know how this presentations goes: 9:15am-9:30am Lyme disease and PANDAS — Hanna Rhee, MD

I was about to write nearly everything Bill said. Check for bartonella, which in my experience, shares a majority of symptoms with Pandas, only has a different bacterial trigger (bartonella v. strep). A combo of abx is usually used for bartonella - at least one intra-cellular and one extra-cellular. We used zithromycin+bactrim+augmentin and then later zith+bactrim+omnicef for 8 months total. We dropped bactrim two months ago when bartonella symptoms seemed to be gone (no tics, no OCD, no more asymmetrical swollen glands). Now we're focused on "just" lyme. I initially thought DS9 only had Pandas, due to strep exacerbations, but he hasn't had strep in almost 2 yrs since a T&A (and continued antibiotics). I'm curious about your LLMD's thoughts that a Pandas dx would make it less controversial to prescribe antibiotics. Your screen name makes it look like you're in CT, which has a law allowing doctors to prescribe long term antibiotics without legal consequences or second-guessing. Anyway, to your question, combo antibiotics for lyme would also help Pandas. Some on the forum also use IVIG, which is not a common treatment in the general lyme community. But its efficacy is very individual, helping some and not helping others. I would give the abx time to work before deciding on any other course of treatment. The other treatment I highly recommend is cognitive behavior therapy (CBT). Regardless of which bacteria is the trigger, CBT can have a big impact on your child's behavior and your family dynamics.

When we first started with lyme, I swore I wouldn't become an "expert" the way I tried to be with pandas. But over time, I ended up reading/watching most of what you list. I think it's all good info, but maybe only half or less applied to our situation. It's been like a buffet - lots to review and consider, but only a handful of things have made it onto our plate. I still read, but it isn't with the same urgency, the same need to find "the" answer. I just liked the site because it had a wide variety of topics. But some of it is too pricey, especially as treatments suck the life out of the bank acct... I hope your upcoming appt goes well!

While I'm thrilled to have more research looking into true causes of medical conditions that have up to this point been treated only an a symptom-management basis (e.g. now looking at probiotics and gut health, FL-1953 parasites being implicated in MS instead of just passing out band aid prescriptions), I think it's so much in its infancy. This article from April http://www.nytimes.com/2011/04/21/science/21gut.html suggests people have one of three "gut bacterial types" the way people have different blood types. So a fecal transplant's success could be highly dependent on a good bacterial match, in the same way you'd need to give someone the same blood type for a major operation.

My DD6 used to get yeast infections every 2-3 months and this way before she ever used abx. She too would be fine while on diflucan but it would come back immediately once we stopped it. When she went on long term abx, she also started TruFlora - a pre/probiotic with anti-yeast strains. We did 2 weeks of every day and now do twice a week, with Theralac probiotics for the other 5 days. She hasn't had a yeast infection in a year, despite combo abx.

I came across this book and thought I'd pass it along FYI, since so many of our kids experience flairs when they lose baby teeth. The book talks about lyme but considering how new these ideas are, I wouldn't be surprised to see additional bacteria involved. The table of contents sounded pretty interesting. So I pass it along FYI... http://www.lymebook.com/silent-saboteurs-nordquist-krutchkoff If you go to the publisher's home page, you can also find several other interesting titles, including homeopathy and a PDR desk reference to supplements. Some are pricey, but some may strike a chord with families here.

A recent post made a link to an article on this website. I started poking around and came to his list of books. Some of them sound pretty interesting, particularly the Schaller books on mold and bartonella - it's been next to impossible to find info on bartonella. Also an interesting book on dental problems, which I'm going to post on the Pandas forum, since we all talk about flairs when our kids lose teeth. http://www.lymebook.com/ Some of the books are pricey, but some are reasonable. Thought I'd pass it along...

Jodie, So so sorry to hear about your family loss. I can't imagine the pain. I hope you are able to comfort yourself with warm memories and the love of those around you. I'm glad to hear you've found a missing piece and are back on track. I hope the recovery is quick and complete. You're in my thoughts. Laura