norcalmom

My theory (I dunno that I can call it mine, I'm sure it is just a jumble of what I've read over the years) is that based upon the fact that all kids make more anti-neuronal antibodies when they get strep. They ALL do. median strep cam K is 135 - in normal kids. If during that time that these anti-neuronals are elevated, they have something that is causing BBB permeability, (a chronic infection - or something else that opens up the BBB) or a STRESSFUL event (since the researcher give the mice in the studies the equivalent of adrenaline (or some other human stress hormone?) in order to open the BBB (see, the experiment does not work unless they open the BBB) . When those autoantibodies cross the BBB - they find the tissue that they fit. neuronal tissue. and they attack it. The immune system thinks its doing a good job - it found the antigen, and it asks for more of that type of antibody. So the body makes more of that one, and more, and more...which is why our kids cam K goes way higher than the normal range when they get strep. Its a learned response as well - so the first couple of times the immune system doesn't make that many of these antibodies, and not as quickly, but pretty soon, it makes them when exposed to any virus/bacteria - because it has always gotten a positive reinforcement. Some have said that this may happen - but that the BBB would close. I don't know how long it takes for the BBB to close after a stressful event, but I know that my child was in a state of flight or fight - horribly stressed -for weeks - and I'm thinking that will create a cycle of producing more and more stress hormones (because of the attack on the brain - the fear and stress is part of every day and night) So, I think it would take a long time to close on its own. ITs a cycle. Stress opens the BBB, the antibodies go through, and they make your kid stressed out, which opens the BBB.... How to close it? Well, for us we found DS has mycoplasma. Which can cross the BBB and I'm assuming also create inflamation in the BBB. So we are working on shutting that down. Also we do some NAC and curcumin (this crosses the BBB) and fishoil - also anti-inflamatory. I think once it closes, the system will "right itself" it will no longer find the antigen, and therefore will not create autoantibodies in over abundance. The IVIG floods the body with 2x the antibodies you normally walk around with (or 1.5 if you do that does) so, your system does not need to make any new antibodies - AND the donor antibodies theoretically are sending back the correct signals when they find an antigen - they are asking for the correct antibody where as before they were asking for auto-antibodies because they learned they always found them, so your body stops being told to make the other ones. Its also suppossed to be anti-inflamatory. Thats the theory - but I don't think they know for sure how and why it works. Strep is the trigger because it mimics our own neuronal tissues and incites the body to make those auto-antibodies int he first place. And of course if you have a chronic infection - inflamation will keep the BBB in a permeable state, and they will keep crossing. But I think for a number of "lucky" kids - that only have strep, no other infections, no immune issues, one IVIG can cure them. Especially if they get treated early - before their immune systems "learn" to make these autoantibodies for all kinds of exposures (PITAND). We've had some good reaction to the Doxycycline his is on. He is no longer reacting when he gets a cold, and we've seen a couple minor things disappear. I don't know that titers can always tell you if you had mycoP (DS's Igg elevated - no Igm - but I had them retest Igg - and bingo - it was rising) (it was really really high - dispite 2 + years on full does azith and 2 IVIGS - which really did help in alot, but with every cold post IVIG, I could see him slip backwards a little more - exacerbations longer, more symptoms added ..) the only symptom he ever had was - he had a long lasting dry cough a couple times a few years ago when this started. And he had pneumonia when he was 6 years old (10 when he had first major exacerbation following perianal strep). I'm reading an very interesting book about antibiotic resistance, which sort of explains how some kids initially get better on antibirotcs, but then they stop working. This could be a sign of a chronic infection. According to this author, the worst thing you can do is give a minimal does of antibiotics to someone you know has an infection - because that is exactly how the bugs become resistant. So, for example my sons colonies of mycoplasma were probably initially reduced alot with azith, but because I had him on prophylactic does at the beginning, and because it isn't a great antibiotic for mycoplasma to begin with, it killed off a bunch of the colony, but the ones that it couldn't kill took over. I just hope the Doxy takes care of it. Doc says wait at least 4 months to retest titers. Have you tried swtiching antibiotics?

Great Article - you and EAMom found at the same time!! Thanks for sharing!

WHAT a GREAT article! Thanks for posting!!!!! I need to forward to everyone I know - and Scientific American - fabulous!

Exposure to a certain toxin could be the thing that make these girls at risk for PANS. Dr Cunningham has a slide in her preso (from Texas symposium) that she believes that there are several things that put an individual at risk for pandas (PANS) 1 )genetics - history of rheumatic heart and rheumatic conditions 2) pre-exiisting immune deficiency 3) other chronic infections (Lyme, mycoplasma) 4) ENVIRONMENTAL conditions Take any of those four things - add strep (and possibly other infection) - and you have pandas. Those things are not uncommon conditions, so it not rare for people to have more than one of them. I've only ever seen ENVIRONMENT mentioned on that slide of hers...and don't know why she believes that or what case reports or if this is just theory, but its a pretty broad statement, and I know it was on the slide she presented at the Texas A & M Grand Rounds about a year ago...and perhaps what they ALL have in common is that they can cause inflamation/breach of the BBB - allowing the autoantibodies we normally make to cross the BBB, and send back signals to make more and more of them. I don't think this is a strict case of pandas - if it is that - but I'd REALLY like to see if their CAM K and antineuornals are elevated - at least that might give a clue that something is messing with their immune system, and or disrupting their blood brain barrier. MS is another type of condition (predominately women, a certain age range, and thourght to be triggered by a virus - and some say is actually a disease of the BBB ! ). I don't know what exactly is going on with Dr C's lab, but I think they are under some type of blind and that if they could run the test, would not be able to disclose the results to the parents (this from Kathy, who was talking with Dr c about it). maybe something to do with the process for setting the lab of for commercial operation, I dunno. IT may be impossible to find the trigger, or the commonality that makes them all "at risk" - and may not be in their system any more. Once the cycle has started, the trigger doesn't need to be there. But if anti-neuronl antibodies are, they can do something to help those poor kids. Swedo - would be amazing for them - BUT I also know that she (et al...) are VERY sensitive to the tight definition of PANDAS , upon which the success of the current IVIG study (with the extremely STRICT guidelines) and her life's work is based. And she is unfortunately not good at PR, so while I don't doubt that she could easily find out if this is PANS if it lies outside the strep (pandas) I'm a little apprehensive of how that could go down in the media. Could either be the biggest media opportunity ever, or biggest setback for pandas if not handled well....I hope they go for it, but get some PR assistance!

DS was on pretty high does of tindamax and Doryx for 5 weeks. So, no surprise that he might start to be having some issues with yeast - but he is 5 days into swish and swallow of nystatin - and no change. LLMD has never seen orange before, and it doens't appear thick and white and yeasty like candidia. Anyone else ever have this?

Our DS's tic stopped when sleeping. And - they can control them a little - alot of kids will go most of the school day with few tics, and come home and have an explosion because they need "to get them out". With our DS, in the beginning he RARELY did it school - teacher thought I was exagerating and silly to be worried (this prior to dx's ) then we had an all day field trip and she was astounded - he could not stop. Also, when playing outside on blacktop and at baseball. Then it just became more and more until he was doing it in class too - although always less in the classroom, and I'd say less when relaxing at home as well. Get him in a new environment or out in the open - whoa!

Its also VERY tough on the stomach. Take it with a meal (not just a cracker ) even if the directions say to take without food. My DS is on Doryx, witch is a time-release Doxycycline that has a patents (so its really expensive, and your insurance might not cover all of it) but its much easier on the stomach. We also have sun sensitivity on it. It is a common side effect - not rare - and your skin will begin to tingle and feel bizarre (I was on minocycline years ago - this is how I know - I had this reaction and my son sunburns VERY easily as well on it) so - be careful, and if its bad, you will probably need to switch off it because even with sunscreen on - I could not expose any part of my skin to the sun at all (I had to switch, DS is OK right now, and keeping fingers crossed that when sun comes out again and baseball starts. Good luck!

Scareltt Fever IS strep - it is just the term used when you have strep throat that presents with a rash. So, she had a confirmed strep infection if you received the diagnosis of scarlet fever. "mycoplasma p. Showed on a recent stool test" - you should look into this an Lyme. Mycoplasma - can be hard to detect and hard to get rid of. It is also known to be a co-infection to Lyme (doesn't have to be tho). If you have indications that she has a current infection of mycoplasma - that alone is enough to trigger pandas. From my years on the forum and our personal experience - until you get rid of any and all underlying chronic infections, you will not fully recover. She needs whatever it takes to get her immune system healthy enough to fight off the mycoplasma and strep that are probably both still present. At this point, if I were you I would do a few things (and probably more) but at the least - 1)start tracking her mycoplasma IgG via blood tests to see if going up/down 2)Get her on antibiotics specific to mycoplasma. Axith does not work for most people - usually a high does of doxycycline or minocycline for several MONTHS (consider Doryx - if doxy gives your child stomach upset which is common with Doxycycline) because of the strep you know she has had and recated to, you may consider doing one of these in conjunction with something that is more strep specific. 3) If she does not have considerable improvement with more targeted antibiotics, I would consider IVIG or PEX. I'd give the antibiotics several months. (probably take you that long to line up a doctor to give you IVIG anyway) 4) I'd get some Lyme testing / evaluation by an LLMD done. 5) I'd see if anyone is a carrier per EAMoms post. 6)I'd try to get her on some natural anti-inflamatories (supplements, DIET) and try some advil (not long term/but on bad days to see if it helps at all) She had scarlett fever and strep, but she also has underlying infection. The IVIG would clear up the auto-antibodies that were triggered by the scarlett fever (strep). but you've still got to treat the underlying infection if the IVIG does not clear that (which it may clear some infections, but in our experience it did nothing for mycoplasma) Pandas usually fairly quickly becomes PITAND - your child reacts to colds and other things besides strep. So, your child does not need strep in the environment to become symptomatic. And immune response to a cold (that they may not even come down with) can trigger the auto-antibodies. Chonic infections WILL mess up your child's immune system. And the most important thing that should be at the top of the list above is - I'd see a pandas specialist and or an immunologist that is "pandas- friendly" to get immune panel and other immune tests done (if you haven't already). If your child is immune defecient, then it may be an indicator that you may want to consider IVIG. Your child is very young, but if it is a clear case of pandas and some immune problems as well (which is common) I'd be on the aggressive side if you have several months of the antibiotics not responding.

I found it - on the Igenex website there are 3 tests not available in NY - but all the other tests are. NY - they don't offer the "initial screening" which is pretty useless and most people that are suspicious enough to think they have lyme order the other test (wester blot) anyway - regardless of what lab they use. The other two that aren't in NY are: the Lyme Antigen Detection Lyme Dot Blot Assay (LDA), and the Reverse Western Blot (RWB) for Antigen. The PCR test mentioned in the article is available as well as all the "standard" tests and co-infection tests. As I recall in our testing - they did the PCR test, and then if that comes back positive (which it did) what they did was confirm it with the Dot Blot (or was it the RWB?) test. So, the three tests not availible aren't ones that you would be ordering anyway. I don't know what the issue NY has with the screening test - the ELISA test (the regular screening test - is horrible too, so I can't imagine that the Igenx one is worse!) They may let more people through with more liberal screening - but the issue with lyme is more that the tests come back negative when they have it - and this is just a screening test that points you to more investigation of Lyme before ruling it out. Her is a link to their testing page with info on their tests. http://igenex.com/Website/#

Mass hysteria isn't only for girls silly! - if you google the top ten incidences of mass hysteria - the number two is "Penis Panic"! "A penis panic is a mass hysteria event or panic in which male members of a population suddenly experience the belief that their genitals are getting smaller or disappearing entirely. Penis panics have occurred around the world, most notably in Africa and Asia. Local beliefs in many instances assert that such physical changes are often fatal. In cases where the fear of the penis being retracted is secondary to other conditions, psychological diagnosis and treatments are under development. It is becoming increasingly clear that these forms of mass hysteria are more common than previously thought. Injuries have occurred when stricken men have resorted to apparatus such as needles, hooks, fishing line, and shoe strings, to prevent the disappearance of their penises. An epidemic struck Singapore in 1967, resulting in thousands of reported cases. Government and medical officials alleviated the outbreak only by a massive campaign to reassure men of the anatomical impossibility of retraction together with a media blackout on the spread of the condition." http://listverse.com/2009/03/16/top-10-bizarre-cases-of-mass-hysteria/

I just wanted to correct part of EAmom's post from above. Igenix is not an "illegal test in NY", it has been certified as a test BY NY health departement. There was a article in the NY times about a decade ago that started this rumor - and a very thorough investigation. Unfortunately the one article has more legs than any of the other stuff that has been going on in the past ten years. Its all that anyone can remember - even my ped - that's all she said - "don't use that lab in Palo Alto - it isn't any good I remember reading an article on them a few years ago." From what I have read about the differences isn't so much in the testing - its in the interpretation. When you get your results, you have a list of bands (that each test for a different thing) and for a Standard western blot test, you would have to have 5 bands that are positive (this number was an arbitrary number decided LONG ago) and they don't care which bands. Igenex's interpretation is that if 2 of some specific bands are positive, (like the LYme specific bands!) then you are positive. This on the IgG portion - which really only determines if you were exposed to Lyme and make the antibody - so anyone that ever had it (treated, or untreated - perhaps their immune sytem took care of it) will show up as positive. On the IgM they agree - 2 bands is enough (igenix or standard western blot). So, if you are like us (pandas parents) you can get a copy of the test results and look up each band and make your own assessment - not just the doctor telling you "you are positive/negative" it isn't that simple. The tests all stink, because the lyme itself isn't floating around in your blood, and you may not be making antibodies to it (especially if you had it for a long time). Like a strep titer. The other tests (like the PCR tests - that look for actual lyme DNA in your blood/urine) are better in that if they are more specific, you can be sure you have it and its active - but they are not usually positive even in active lyme patients (because like I said it doesn't live in your blood/urine - and even in this test what they do is give you large doses of antibiotics to try to kill some off and send it to your blood/urine to be removed by your body - after 5 days of that they test you)..so all the tests are pretty bad. This from Igenx website: Laboratory Certifications CLIA 05D0643914 Medicare ZZZ32759Z CA State Dept of Health CLF4033 FL State Dept of Health 800002892 MD State Dept of Health 885 NY State Dept of Health 3172-805133A0 PA State Dept of Health 025659 NPI 1396837605 I'm sure someone that knows Lyme testing better than me will know the entire history, and I didn't want to hijack the thread, but from what I've read the tests Igenex test are cleared and held to an even higher standard due to the article.

darn - I wrote a reply to this and thought it posted but it got tossed bcs my connection was down unbeknowst to me. I think that the issue is that myco P and Lyme can effect the BBB. cunningham's theory is that several things can make a kid at risk - 1)genetics (history of rheumatoid factors or immune deficiency), 2) chronic infection, and 3)environment. At risk + strep = pandas. And once it starts, hard to find the initial risk factor because it gets complicated. Lyme and myco can actually cross the BBB - as can other infections, opening it up directly or by inflamation. Strep infection causes a rise in the production of anti-neuronals (this in NORMAL kids) due to something called "molecular mimicry". This isn't a problems since in most people antibodies are too large to cross the BBB and attack the brain, but in our kids - they are getting across. And the way the immune system works - its a feedback loop that learns from itself. And what it is learning in our kids case is that the antien that fits these auto-antibodies is being found (in their case it is their brain) and the immune system calls for more and more of these antibodies. And, it does it sooner and sooner because it learns from itself - that is how it developes immunity.

I didn't think the Gupta interview was that bad. He at least indicated that "conversion disorder" / "mass hysteria" pretty much means the doctors do not know what is causing this. And, he also brought up that there may be others that are having symptoms as well - the symptoms in the 12 go from very mild to extreme, and he said that there may well be numbers of students that have mild symptoms that have not come forward/sought medical attention yet. No one has mentioned if there are other symptoms... and from a parent of a kid with violent tics - the other stuff is easier to miss, when every second is occupied with tics. So, I wonder if anyone is even asking them the right questions (since they are primarily seeing a neurologist, probably not). I'm sure that these parents are going to seek out a number of doctors and get several opinions. I re-sent Dr c (via Kathy this time) the email I sent a few months ago involving 6 (at the time) students, and now it is 12 and is a national story, suggesting that she offer her services to see if auto-antibodies are involved. Kathy said she is following the story and would ask Dr C to reach out. It would be great PR for them and their new lab if it did uncover some auto-immune issues. And of course it could change the course for treatment and investigation of causes if they are elevated.

Have you been tracking your son's IgG level over time? We switched to Doryx and things are improving for my son. We did a "booster" (really, its just a second IVIG) after about 7 months because DS was PITAND, and with every little sniffle I could see him slide backwards instead of moving in the other direction. There was no way I was going to let things get as bad as before our first IVIG. So, we did a 2nd. It help the back sliding, and we saw some improvement, but not nearly as dramatic as the first. It go him to around the same place - 90% better. After retesting myco IgG and still seeing it was still rising, despite 500mg of Azith/day and 2 IVIG's. switched to Doxycycline (Doryx) Things have started to improve on this. The biggest being - he hasn't reacted when he got a cold a few weeks ago, and I've seen a couple minor things getting better (in the middle of cold/flu season - so I'm taking this as a very positive reaction to new antibiotics). DS is also on tindamax, which I think makes him a bit angry irritible and rage-y . Tindamax is bcs I've decided to treat for Lyme, since the myco P was never cleared from by his own immune system, and it is a common lyme co-infection (and because I test positive and DS is boarderline IMO). So far its working - but there may come a point where it doesn't anymore. The Azith also worked for the first 2-3 months, and he got much better on it, but then he got a couple colds and those gains were quickly lost and I don't think the Azith was doing much in terms of fighting the mycoP. It probably did have some positive effects on him due to anti-inflamatory properties, and immune modulation which I could see if we went off for a few days (could have been my paranoia too). Hopeful this is the right antibiotic for him. I will keep him on it for 6 months or so since what I've read about the failure rate for chronic mycoplasma with shorter term is very high. I'm hoping to get DS off the tindamax next drs appointment. Its a Lyme cyst-buster. Also doing immune system support - a product called A-myco that is an herbal tincture, and vitamins. DS reacted HORRIBLY to both IVIGs migrains and nausea for 10 days following the second IVIG ( and this with me giving advil every 4 hours). SCARY BAD. If I had to do over, I would have tested myco before 2nd IVIG, and would have seen it was a big issue. I'd have made sure titers were in normal range before 2nd IVIG.

oldest news report see is from Nov 8 - and at that time the tics were in 6 girls, for little over a week. Maybe the primary physician that mentions 9 months was treating the third girl interviewed on the today show - she mentioned that she was getting better by adjusting SSRI's that she was already on. so maybe she has been seeing that doctor for several months - before the tics. I've also read there is a huge chemical plant in the town, already the focus of other health related issues/concerns. I sent the new articles to Cunningham, in November when I first saw them. I soooo hope that they get anti-neuronal tests done, maybe with new nationwide news coverage. Whatever they reveal, could be a clue - if it is purely neurologic then the (chemical plant or "conversion disorder") then there shouldn't be elevated anti-neuronals. If it is immune mediated caused by vaccine , bacterial or viral illness then I'd expect to see most of those girls with high cam K's. Has anyone seen anything about other symptoms? OCD, insomnia/nightmare frequent urination? Anything else basil - ganglia related? What a CANS of worms.

Is this the first or second time your child has had a really bad spell (and exacerbation?) I'm asking because you may be able to get into the study with Dr Swedo if they are still recruiting - and get the best possible care for your son free of charge, from the top pandas reaserchers in the country. You should at the very least call them, see if you qualify. They pay travel. D-nase positive tells you he had/has a strep infection. You have to be willing to do the IVIG, and they can help you decide if things are bad off enough for that to be the best option at the point you're at.

I agree with EAMom. The ones that actually get the dx "pandas" are only dx'd because of exceptional (and exceptionally committed) parents. Who not only have the intellect, but the time, money (not to mention the balls!) to go against what the 10 specialists they have seen and the insurance companies are telling them, (and read reams of research.) I do think that because of the challenges these kids have (my son - also in 2% of a couple of the IQ tests, and all the others in gifted range) have adopted coping mechanisms - like dyslectic kids do - and perhaps develop some things they are very good at. For example, my son would not write down math as he went, or show any work. He would do it all in his head and write the final number on the paper dispite years of pleas to show his work and many points lost for not showing it. We just thought he was smart - since at age 10 he was doing arithmetic in his head that I could not ( I majored in computer science and math in college). Little did we know if was because he was DISABLED. Unable to perform fine motor tasks at the same time as spatial/mathematical functions. It was a neat party trick for a while, but ultimately he's not going to be doing calculus in his head so I am thankful that we discovered this in did the IQ testing. I believe this specific ability was developed because of him compensating for what he could not do. It isn't a gift,its a PROBLEM. And, there are probably those out there that have kids with other abilities, some perhaps developed because of their OCD. I also think there is a need for us parents to remember and account for all the good things our kids are capable of (brag a little -hey we're parents, and where better to brag than an anonymous forum!) Ultimately, I think anyone can get this disease. And our kids will be lucky if they come out without any significant long term disabilities. I say this because I've read some S. C. research that indicated that executive function (and maybe some other areas? don't recall) is more likely to be a problem for people that had SC, and that is the closest thing we have to pandas to compare to.

I have to wonder what the failure rate is on the that strep pneumoniae panel is they run. My son only made 1 titer in range, and of the others, he had 10 at absolute zero. They want you to revax in order to test if your immune system makes a response, which we did not do. There are other ways to get more infor according to more recent immunoligist, a sspecialized B cell testing (wihc our lab messed up blood sample on, and I didn't re-do because DS had horrible needle fear and getting him to do the first bloood draw was all I could take). My son has very high mycoplasma pneumoniae titers for IgG, and wondering if any correlation to kids with hardly any response on the strep pneumoniae panel and chronic mycoplasma.(or Lyme). anyone else have these two things in their results?

Just added ultimate flora adult formula - 15 billion, 10 strains, delayed release capsules by "renew life". These were recommended by Whole Foods vitamin person. His tongue was starting to get a little "furry" - so I am increasing the probiotics, and alkaline forming foods/drinks. I give him one of these at night. He also takes Yum-o-dophilus tablets - which are chewable - so I put those in his lunch and he can eat at snack (two hours after his morning antibiotic) and they taste like sweet tarts, so he likes em, and he would never take a pill at school. They don't have nearly the number.

I listen to that (again) and see what she says. I sent her an email, there were number of things the study looks at, and would like to see if anything was published, or will be published. If anyone re-listens to the koffee klatch, and Swedo mentions the name of the researcher that ran this study, we might have more luck contacting that person directly (if it wasn't swedo herself)

I found the same study about 2 years ago - before it "closed" and was never able to find an answer. If you look at the notes that you can link to, the only thing it says is that it was recruiting. Possibly it was recruiting for 8 years? LOL. I don't know if anything will every be published from it - but would love to find out. If you uncover anything please let us know! It says its being run by the NIMH, I'm going to sent it to a few people there and see if I get any reply.

first - I vote for "the illness previously know as PANDAS" - so funny.. I have to admit, although I didn't fully read the recent paper (yet), and I don't have anything good to say about its author, when I heard Swedo et al were going to call it PANs - even I wanted to make fun of it. Clearly, pandas are to zebras as PANS are to CANs. AND, he beat them to the punch by putting something out there first, and when they do finally get the white paper out and call it PANS, they will look silly, since all of the medical community will have read about CANs first. Which looks like a re-work of the white paper with a bunch of other junk thrown in. Come to think of it, they cannot seriously use the PANS name now, so they will have to think of a new name, which they should anyway. You can't have doctors trying to remember and differeentiate between Childhood Acute-onset neuro-pyschiatric syndrome and Pediatric Acute-onset neuro-pyschiatric syndrome. It won't make any sense. Why don't we all just start calling it Swedo's Disease or Rapoport's Syndrome? (Swedo is probably too humble to refer to it as her discovery ). The symptoms/presentation/possible causes - shouldn't be in the actual name! It should have a unique name (that can be googled or have a website with a .com after it !!!!) and the disease can then be slightly modified if needed - for example - the "acute-onset". Usually it is, but you don't put it in the actual NAME. GEEEESH. Even it there is a chance that 1% of the cases aren't acute-onset - you just let someone read the name - and THAT is as far as they get, because it doesn't leave any leeway. Not Acute-onset? move onto the next illness on the list. As I said I haven't read they whole thing, but it looks like plagarism of the "way forward" paper, even of the acronym. If it forces them to rename it and narrow the focus a little then I say "thank you Singer"! Here's another: AIN'T LOST - this illness is defined by the group for which Anitbiotics and Ivig are Necessary Treatments to Lessen or Obliterate Symptoms Totally. I won't argue about the cause, the presentation, or the timing !

Swedo told me directly that she is already writing up a Lyme study - I THINK mentioned that on a Blog Talk Radio interview about 5 months ago - she told me at the symposium in TX in October, and I know that Cunningham has been a keynote speaker at at least one Lyme conference - so they are already "studying" it. Cunningham has been involved for a while since she has written papers on "Lyme Carditis" and the mechanism by which Lyme can cause heart damage. (I can't even remember the name of that paper, but it was older- I was looking into SC and heart involvement, before I even considered Lyme). I think they both want to get that going, but need to wrap up the pandas study first. I'd be interested in knowing (and I've emailed her this be she didn't reply) what the Lyme Cam K numbers are for those with Neuro-psych symptoms and those without. I just wonder if it is similar to the strep with and without neuro-psych symptoms numbers. Less than half of the blood samples in her anit-neuronal study were from known Strep/pandas samples. She didn't tell what the other half were. (mycoplasma,lyme, strep without neuro-psych symptoms, normal sera, ...etc) .

IVIG helped our sone tremendously, but if I had known about the myco P prior to the IVIG, I would have treated the myco P aggressively first, and then if needed done the IVIG. The IVIG will not remove or stop a chronic mycoplasma infection that I know of. It may take care of some minor infections, or boost your child's own immune system enough to do so. the mechanism by which IVIG works is not fully understood. It works for some auto-immune illnesses, but not others. It is suppossed to be highly anit-inflamatory, so perhaps it is closing the blood brain barrier and our kids autoanitbodies stop finding themselves for long enough to stop making them in high amounts. No one knows. My son had two HD IVIGs. He got much, much better from the first one. After it, he started to slide progressively back with every cold - and although he never got as bad as prior to the first IVIG (I didn't let it go that far) he was headed that way. After the second he imporved again, but not as much as the first (although, he wasn't as bad off). But he didn't keep improving, and I could tell something was still going on. He got about 80-90% better, but still had one OCD thing that is troubling for the whole family, as well as some other relatively minor pandas stuff. That's when I found out his mycoplasma IgG titer went from 2450 to 2950 (normal under 300, IgM negative) - he had been on 500mg of Azithromycin the past two years - This test result came in about a month ago. He' s now on Doxycycline, (same class of drug as minocycline - you can discuss with your doctor why you might want one over the other) and I am treating him for Lyme as well as the mycoplasma, even though his Lyme results aren't 100% definative (the tests stink). The truth is the LLMD's know their chronic infections, how to deal with abberant immune systems - which is one effect of have Lyme for a long time - and about mycoplasma because it is a common co-infection of Lyme. So, treat the mycoP. Try to get rid of that infection, otherwise the IVIG, which can be very tough on a kid/family - our son had horrible side effects / vomitting and migrains for almost two weeks after. Not to mention I was a nervous wreck flying across the country to get this procedure. Maybe if I had the right diagnosis and antibiotics in the first place it would not have been needed. IVIG is not with out risks, and in our case I had to pay for the first one entirely on my own. Second one was covered because DS's new immunologist found enough wrong with his immune system that he could get it covered that way. You may need it anyway, but you need to treat the mycoP with the right antibitocs regardless.

thank you all for getting back to me so quickly - I wrote the post last night after another blow-out, and got to get on this morning and see that this could indeed be the tindamax (most likely suspect). It isn't his usual pandas stuff - just the moodiness and mental inflexibility. My goal is to make it though a 4 week cycle...although I don't know what will happen when school starts, it could be too much for him. I don't want to have to do tindamax again, and he is half way through right now. On another note when I was reading about tindamax - I saw that Burrasco recommends not using it at the same time as Doxycyline (and the other drugs in that class) .So I will be contacting our LLMD regrading that (he's on tindamax and doxy right now). Burrasco wrote that the tindamax lowers the effectiveness of the doxy, and high blood concentrations are what is needed on the Doxy, so ... and also about pulsing - DS is not pulsing - he is on a full dose of tindamas (250 - 3 times per day for total of 750/day) and full does doxy - 150 twice daily -he had to ramp up to this - he started with one doxy/day for a few days, then 2, then we added in the tindamax a week later. Between all the antibiotics and supplements and probiotics, when do you give bentonite clay? won't it bind to either the antibiotic or the sups/probiotics ? When school starts next week his medications schedule will look like - 7:30am - antibiotics and A-myco herbal tincture, yogurt/probiotic in lunch, 3:00 antibiotic, supplements before dinner and second A-myco, antibiotics at around 8:00 probiotics before bed, around 10:00pm. When would I give bentonite clay that wouldn't bind to something else? I'm going to try the epsom salt bath tonight - that doesn't sound like it will bind anything, and he might just like it. THANK you all sooo much again. I'm going to forward to my husband - who will hopefully lighten up on DS on the small stuff when he see your experience with tindamax. The constant badgering for stuff that he wants (to do) and is not allowed -along with the tantrums that follow - is driving us MAAADDDD!