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We use garlic pills in addition to daily probiotics (theralac/truflora alternating during the week). This seems to really help. There's an integrative practice in Northampton. They don't treat Pandas but the docs would be attuned to yeast and using supplements to support the body and they understand how methylation effects health. http://www.northamptonwellness.com/ And...they accept insurance! So it wouldn't replace your Pandas doc but could be a helpful addition. FWIW - I know many swear by florastor and Sacc Boulardis. But my son seems to react to it as if he had a yeast infection. His behavior gets ramped up, hyperactive. He does much better on Theralac. So just something to bear in mind. No science supports my observations, but after three attempts at using it, I've stopped.

I think Nancy's suggestion of looking into yeast is a great idea! It's amazing how a yeast infection can cause neuro symptoms, especially in boys where you don't get the tell-tale itching. FWIW, in addition to probiotics, we've seen yeast issues go away by adding garlic pills to our regimen. (also good for the heart). My other thought was maybe the infection or the antibiotic is causing some sort of deficiency. Like maybe the body's need for zinc or magnesium is 100 every day. But when illness comes, the body needs 160 units. So it initially robs from every cell, every place it can find the stuff (like looking for change under the couch cushions). Over a few weeks, there's no more spare change to be found and the body becomes depleted of this mineral/vitamin whatever it is. And that deficiency is leading to tics. Eventually, as the body heals and deficiencies resolve (coins are again lost in the cushions), the tics resolve. I'd look for deficiencies that can cause tics (magnesium is one but I know there are others) and I'd also go after yeast (if yeast, you may see a herx - a worse before better - response for a few days). (Yes, Nancy, the analogies were for your benefit - I know how you love them so )

Great article! I love this guy!!

To answer the next question that you didn't ask - what do you do for a herx? As Kimballot said, it's caused by the body not being able to get rid of toxins released by dying bacteria. So the first thing is to add detox aides - such as activated charcoal, bentonite clay - which absorb toxins. But these absorb everything, not just toxins, so they need to be taken hours apart from other things like abx, probiotics, supplements... The second thing to consider is adding anti-oxidants. When toxins are in the body, they can cause cell damage and death. Antioxidants attach themselves to these "oxidized" cells and transport them out of the body. They are the body's scavenger janitors. The mother of all anti-oxidants is glutathione, which the body produces as part of the methylation cycle. But extrenal sources of glutathione are poorly absorbed. So you can take a pre-cursor - something that helps the body make more of its own glutathione. These would include alpha lipoic acid, CoQ10, NAC and others I can't think of right now. Resveratrol is a great antioxidant that comes from the skins of grapes (which is the thing that makes red wine "good for you") and a plant called japanese knotwood. The third thing for detox is to do things that help the body with elimination. So magnesium to help "transit" time (magnesium is also great for the brain), Milk thistle or other supplement for liver support (the liver and kidneys are the body's main filtering systems), water to flush the kidneys, epsom salt baths, and plain 'ol sweating. Finally, if a detox plan helps but not enough, you can consider scaling back on the dosing or frequency of the abx or herb that's doing the killing. Lower the abx or take it less frequently (with doctor's approval of course). No point in killing the bacteria if you kill the patient in the process. Slow and steady. If the body is telling you it can't handle the load, sometimes it helps to reduce the load for a time.

Here's the FDA list of blood products, vaccines and OTC health products containing mercury: Plasma products: http://www.fda.gov/BiologicsBloodVaccines/SafetyAvailability/BloodSafety/ucm095529.htm Vaccines: http://www.fda.gov/BiologicsBloodVaccines/SafetyAvailability/VaccineSafety/UCM096228 OTC (nasal sprays and eye drops - yes, lets put this stuff directly into our brains! http://www.fda.gov/RegulatoryInformation/Legislation/FederalFoodDrugandCosmeticActFDCAct/SignificantAmendmentstotheFDCAct/FDAMA/ucm100218.htm Of course, this doesn't address what other things are now being used as preservatives.

Thanks Vickie! One of your links didn't work for me - here's a summary of who voted http://www.cga.ct.gov/asp/cgabillstatus/cgabillstatus.asp?selBillType=Bill&bill_num=SB0206&which_year=2012&SUBMIT1.x=0&SUBMIT1.y=0 (go to the votes heading) The description of the bill is: AN ACT CONCERNING A STUDY OF PEDIATRIC AUTOIMMUNE NEUROPSYCHIATRIC DISORDER ASSOCIATED WITH STREPTOCOCCAL INFECTIONS. To require health insurance coverage for the diagnosis and treatment of pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections. I thanked my senator for his yes vote and took issue with my state rep who was absent for the vote. Not sure how all this got started, but hope that the Yale/NIH study helps support an insurance mandate! (CT also passed a law a few years ago protecting doctors who prescribe long term antiobiotics - every once in awhile, I'm glad I live here, despite the weather (and the tics).

It's possibly an allergic reaction, even tho she'd had omnicef before. Or, given that she has EBV and myco, this could be a lyme or bartonella rash. The worsening behavior could be a herx. I'd consider testing her. You can also look at rash examples here: http://sites.google.com/site/drjoneskids/rash-photos At the bottom of the page are links to rashes for co-infections. So there are multiple pages of rashes. You'll have to do a little navigation.

My son got significantly worse for 10 weeks post IVIG. I never saw any gains, only losses, and it took a long time to get back to where we'd been the day before IVIG (about 4 months). It was incredibly hard on him and the whole family and we all vowed together to never do it again. It just didn't bring us anything and we never felt that a second would be the right thing to do. It was just the wrong treatment for my son. The one bright spot was that his response led us to test for lyme and then pyroluria. It's been 20 months of lyme treatment but he's now in a better place than he's ever been in his life and we're looking at stopping abx soon to see how he does. He is currently symptom-free. Not trying to say which is the right path for you. Only letting you know that with lyme, I think IVIG has the potential to provoke wicked herxing - more than the body can handle - and that it isn't the only path toward health. I feel it's a supportive therapy in many cases, but in my son's case, it did temporary damage and his did better healing-wise using other treatments. I personally feel IVIG isn't the only option, particularly for kids who have non-strep triggers but even for those who do. Makes me a minority and I'm not trying to discourage anyone or criticize anyone who feels differently. Just offering a alternate viewpoint. If you decide to proceed with the second IVIG, I'd seriously urge you to put a detox program in place prior and particularly after the IVIG. Parents on the lyme forum may have some godd ideas for this.

Here is a link to the research paper that explains what each marker might indicate regarding lyme and mold, written by Dr Shoemaker. It's been awhile since I read it, so I could have it wrong, but I seem to recall that high C3a was linked to lyme and high C4a could be either lyme or mold. But your best bet is to read the article and not rely on my poor memory. http://www.jacemedical.com/articles/C4a%20C3a%20testing%20for%20Lyme%20disease.pdf

We see Dr M. Yes, he uses ART and has trained with Klinghardt. But he uses a buffet table approach to treatment. He doesn't follow any single protocol but looks at your situation and uses options that seem to fit you best. He uses both herbs and abx. He looks beyond lyme and considers mold, metals, nutritional deficiencies, parasites, pyroluria, etc. My kids have been with him for 20 months. DS has been symptom-free for two months and we'll be looking at stopping abx in the coming weeks to see if he sustains remission (meaning he'd be done with treatment) or if he regresses (meaning we'd probably look at pulsing abx to go after biofilms or cysts). So fingers crossed that we're at the end of the rainbow - or at least in sight of it. I don't know anything about the other doctor you mentioned.

High copper usually shows as erratic emotions and is often mis-diagnosed as bi-polar. Here's a pretty good overview: http://drlwilson.com/articles/copper_toxicity_syndrome.htm It influences a lot of psychiatric responses, anxiety, mood regulation, the thyroid and adrenals, fungal and yeast infections... Blood tests for any mineral/vitamin is unreliable. Just about every site I've ever read says this. But there doesn't seem to be a good way to test, so plasma or urine tests seem to be all you can use as a rough guide. My DD had high copper/normal zinc in her blood tests, but she was borderline for pyroluria, meaning the zinc in her blood was unavailable and pee'd out before it could be used. When she was dx'd with epstein-barr this winter, we used a Rx that contained a small amount of EDTA, which chelates copper. She also takes a daily zinc/B6 supplement (Core) which also naturally changes the balance of copper. Vitamin C in excess of 500mg/daily will also naturally "chelate" copper. It's all about balance. Since addressing her copper issues, my DD has become more stable. Less "Cybil" and more Even Steven. She's also less spacey. If your kids are doing great, then it's probably not worth messing with. But if you see bi-polarish moods or difficult personality, then it's something that you can look into.

Lyme has a roughly 4 week life cycle. Quite common to see a spike in symptoms every 4 weeks when the bacteria replicate. Zith might be helping, but generally, you use a combo of abx - one extracellular and one intracellular. Zith would cover the intracellular, but LLMD will probably add an extra as well. If DS has all his adult teeth, the abx of choice is doxycycline. But you'll need to be careful during the summer months, as doxy causes sun sensitivity and you can get sunburn very very easily (like in minutes). After a period of time, many LLMDs either rotate the abx combo or add a cyst-buster like tindamax or flagyl or herbs. But that's a discussion for later. For now, focus on detox and supplements like magnesium, zinc, the Bs, and a good antioxidant - alpha lipoic acid (tho I'd rule out metals first), or I like resveratrol. Something for liver support is good too, as you'll be making it work hard with all those abx and bacterial toxins. We use milk thistle for that. Chin up. You know now. It will be a long journey. But it will be a productive one. You can stop running in circles and having surgeries that don't take care of the problem. You can get to the root. When I got DS's dx, I crashed. I was so very exhausted from all the Pandas stuff and had a lot going on personally. But 20 months later, my DH and I can't believe how far we've come and how good "normal" is starting to feel. The lyme dx was a blessing in disguise.

Good goobely woo - you are lit up like a Christmas tree! Based on all these results, I wouldn't have a doubt in my mind that pursuing lyme treatment is a wise course of action.

Go to their site, then the tab that says "Lab tests/specific tests/Kryptopyrrol in urine On that page, you'll see a "more info" on the test and a form I think the lab syas to just do one urine catch. Klinghardt tells his patients to do a 24 hr catch because levels can fluctuate thru the day and he feels a 24 hr sample gives you a better picture. To do a 24 hr catch, you catch into one light-tight container, with 500mg ascorbic acid (Vit C) added as a preservative. Then at the end, you shake and pour into the sample container the lab sends you. I have specific instructions and helpful hints from my doctor that I can email you. PM me your email when you're ready to do the test and I'll send them to you. If you can't find a doctor to order, I know a few people who supplemented with Core on their own and based the decision to test on what sort of changes they saw or didn't see. But Core isn't cheap. So if you can find a doctor to order the test, it's worth the $70 IMO.

It's a urine test from Vitamin Diagnostics (Now European Lab of Nutrients) http://www.europeanlaboratory.nl/ You need a doctor to order it and the doctor has to have an account set up (a simple process). The results will only go to a doctor but it doesn't have to be an MD. I believe NPs and chiropractors could also set up an account.

This guy says the ideal ratio is 0.7:1 http://www.drkaslow.com/html/zinc-copper_imbalances.html Copper/Zinc Imbalance The human body has an elaborate system for managing and regulating the amount of key trace metals such as zinc, copper, iron, manganese, chromium, etc. circulating in blood and stored in cells. Nutrient metals from our diet are (1) incorporated into blood if blood levels are depleted, (2) transported into cells if cellular levels are inadequate, or (3) excreted if blood and cell levels are sufficient or overloaded. When this system fails to function properly, abnormal levels of trace metals can develop in the brain and other parts of the body. One of the most common trace-metal imbalances is elevated copper and depressed zinc (the optimal plasma or serum ratio is 0.70 - 1.00). The ratio of copper to zinc is clinically more important than the concentration of either of these trace metals. Copper and zinc are regarded as neurotransmitters and are in high concentrations in brain hippocampus. As a result elevated copper and depressed zinc have been associated with hyperactivity, attention deficit disorders, behavior disorders, and depression. Also, many of those labeled with autism and paranoid schizophrenia have elevated blood copper levels in addition to other biochemical imbalances. It has been reported (HRI-PTC) that 80% of hyperactive patients and 68% of behavior-disordered patients have elevated blood copper levels. Their families often report worsened hyperactivity/behavior after consuming vitamin supplements or cereals rich in copper. In many cases, symptoms may be provoked by consuming chocolate (rich in copper) or food dyes rich in hydrazines, which lower blood zinc levels. Many high-copper patients (often labeled "depressives") experience severe PMS, are intolerant to estrogen, and may have a family history of postpartum depression. This group also has a high incidence of acne, eczema, sensitive skin, sunburn, headaches, poor immune function, and white spots under their fingernails. Here's something on the relationship between zinc/copper/C http://www.natural-health-information-centre.com/copper.html It advises to not supplement both zinc and copper at the same time, as they compete for the same receptor sites. High C can deplete copper. However, copper is needed for C to do its job. As with everything, it's about balance. I don't know what to say about your labs. DS had a bad zinc deficiency, saw great improvements from Core, yet his copper was never high. Sometimes it makes no sense. But the zinc/b6 changed everything for him. I see zinc as a supplement for acne in lots of sites. Hopefully you'll be able to get professional words of wisdom to sort this all out.

DCMom, Since you are blessed with a girl who likes healthy food, I'd think of it this way - during an illness, the body demands a much higher supply of certain things. Zinc would be one of those things, since it's critical for both the immune system and for helping the body eliminate toxins from dying bacteria and oxidation from damaged cells. So two systems placing high demands, combined with your DDs drop in consumption of this nutrient. Sets the stage for a significant deficiency. One option would be to use a multi with a solid dose of zinc and consider supplementing - maybe as high as 40-50 mg during flairs. The supplement would sit in your cabinet but like other things you use in a flair, would be there as needed. As for mine, we aren't fortunate to have healthy taste buds, so daily supplements make a big difference.

My DD suffered from this as well. We used CBT (highy, highly recommend you do CBT in addition to any other treatment - it gives them life-long skills). 500mg/day of tryptophan has also helped immensely.

Quercetin takes about 10-20 min to kick in, depending on how irritated your symptoms are when you take it. About the same as it takes a motrin to kick in. When things are bad, we use 1200mg (two pills) at a time. When things are under control, we take 600mg at a time. I love the stuff. My only complaint it that it only seems to last about 4 hrs, compared to the 8-24 hr relief you get from OTC allergy meds. But on super bad days, my DD takes one 24hr zyrtec and then quercetin thru the day as needed.

I've posted about this book before- for anyone dealing with AN symptoms, I think this book has some great insights into zinc deficiency and AN - and how the deficiency can come first and trigger the AN - "Answers to Anorexia" by Dr James Greenblatt http://www.jamesgreenblattmd.com/ Greenblatt is a professor at Tufts and has a biomedical psychiatric practice outside of Boston. Johnsmom - in the book, Greenblatt advocates the taste test you describe. If a zinc/water solution has no taste, you're very deficient. If it has a strong metalic taste, you don't need supplementation. I have his instructions for doing the test scanned if anyone wants them. I highly recommend the book. He also has a chapter on other supplements that are helpful, along with several published peer-reviewed studies on the link between zinc deficiency and AN. There are a few things to keep in mind - first, if you are zinc deficient, you may have high copper. The two are often ying/yang. So if you start a zinc supplement and are very deficient, you may have a honeymoon period followed by a herx-like period where your body starts to shed excess copper (resulting in temporary bi-polarish behaviors or cycling). second - zinc is essential not only for the immune system but also for the transsulfuration pathway, which produces glutathione and is the body's sanitation pathway, which clears the body of junk. If you've been zinc deficient and you start supplementing, you'll be re-starting the sanitation conveyor belt. Garbage that's been clogged will start coming out. So this too could result in a temporary herx-like response. You can drop down in zinc dosage and add detox/binders like activated charcoal for a few weeks and then re-build your zinc dosage. Always start slow and low for any supplement and build up over a several weeks. third - over time - like 3-6 months - of zinc supplementation, copper levels will drop. Eventually, you may need to add copper (1mg/day) to keep things in balance if you decide to continue zinc supplementation. fourth - if you have a zinc deficiency, you may have pyroluria, which would also mean you have a B6 (P5P) deficiency and this could be mean life-long supplementation. So something to keep in the back of your mind if you supplement with zinc, stop after a time and then see a regression. It could mean the body isn't able to hold on to zinc without daily high supplementation of both zinc + B6 Regarding dosage, it depends on how deficient and whether it's pyroluria-driven. My DS who has pryoluria takes 40mg/day. My DD who was borderline for pyroluria was once as high as 30mg but is now on maintenance 10mg. The zinc helped her but what really made the difference was zinc + tryptophan, which effects the GI tract and stomach acids. Sometimes it's a combo of supplements that's needed. Two good sources of zinc are Bipoure's Core and SourceNatural's multivitamin Advanced One (with or without iron). The SourceNaturals has some pretty high values on other vitamins, and its not cheap. But I swear I can tell the difference when I take it compared to other multi's. I tried cheaper multis but keep coming back to this one. It has roughly the equivalent value of zinc/B6 as 1 Core pill.

Great news! FWIW - we're addressing MTHFR/methylfolate/methylB12 with DD7 and things are improving. Not without bumps - have been working up very slowly and changing things one thing at a time, which is frustratingly slow. But this seems to be her lock and key. Not just MTHFR. I think there are other methylation hurdles to uncover as we go along. But the changes have been significant enough to make me optimistic. She is actually hungry these days - a huge change. Please let me know how the Enhansa works for your son. If that doesn't do the trick, 500 mg/day of tryptophan has really helped my DD (another point in the methylation cycle). Fingers crossed for you!!

I have to agree with PowPow. I'm grateful that someone with the authority of the NIMH is willing to re-frame mental illness as just "illness" and challenge conventional thinking about infection. I have my concerns about vaccinations and support a middle ground of calling for screening - look for what makes some kids more susceptible to potential harm instead of insisting that all kids be treated - and vaccinated - the same (or that no kid should ever be vaccinated ever). I am against combo vaccines and the insane number of vaccinations given to babies and toddlers. But I am also grateful that I'll never know the fear that my child could be crippled by polio. I am against concocted "needs" and will not get my DD vaccinated with guardasil. But I don't much care for this essay's attempt to tie Pandas with mercury. There are kids on this forum who haven't been vaccinated and still have Pandas. Kids who have been vaccinated and went a long period of time with no adverse response. Do I think vaccines could play a role in causing trouble for a subset of the population? Yes. But I don't see the need to tie Pandas to mercury. Plenty of vaccines use other potentially harmful preservatives beyond mercury. Plenty of other issues (poor methylation, nutritional deficiencies, genetics) are at play. I read on another site that Pandas is becoming accepted because big pharma is seeing a way to promote expensive treatments and make money. Why does it feel like the Pandas cause is in a catch-22. If it becomes accepted, which is still a long way off, then other causes seem ready to denounce whatever treatments become available or try to link Pandas with causes such as mercury. Is mercury a bad thing? Absolutely. But do all Pandas kids have a mercury problem? To make this leap feels like a big stretch. And I kinda resent having my kids' disease hijacked and dragged into this argument when there's nothing concrete to suggest it's a valid link. JMHO.

Thought I'd share a nice blog by a friend who has managed to keep a wicked sense of humor while helping her son manage OCD. OCD and Seasonal Exam ###### http://www.easytolovebut.com/?p=2242#comment-4367

Saw this discussed on better Health Guy and thought it was worth passing along: http://mylymeguide.com/ My Lyme Guide is dedicated to helping patients and their caregivers with the challenges of managing tick borne diseases. Marjorie MacArthur Veiga, a former Lyme disease patient and mother of a teenager with Lyme, provides consulting to aid families overwhelmed by the complexities of chronic illnesses. Mrs. Veiga and her doctor, Sarah Fletcher, M.D., have developed a manual containing tools to provide organization, medical information and emotional support for patients and caregivers. My Lyme Guide is designed especially for parents and the children they care for, but can be used by any patient with a chronic illness.

Hard to find veins have always meant my kids or I were dehydrated. So that's one thing to consider. I think nattokinase is used in lyme for thick blood issues.