Dr_Rosario_Trifiletti

Thanks. No, Dr. K and I have not compared notes. I think we are both very busy and the best way to do this may be face-to-face when I come to Chicago in May. This is a complex disease which (like autism) seems to affect no two children in exactly the same way - so the idea of a rigid protocol is probably not in the cards. I hope that, with the think tank experience we can pool everyones experience and come up with some sort of "best practices" statement. Dr. T

Oh dear, I forgot that Lynn J did tell me about the WebSite and actually asked me to be on the Board of Directors, which I agreed to do! The WebSite is evolving. Now that coffee has cleared the cobwebs .... In my view - PANDAS is more common that Autism Do you know how many Autism Websites /Foundations etc there are out there? There's room for many PANDAS sites and foundations - but it is important that there be a CENTRAL site that is run by physicians that see these patients day in and day out. It's OK that they have fav docs and fav research slants - any research is better than no research. At this time, there is a lot of parents wondering "does or could my child have PANDAS" and they need a reliable source of information. This is what the "Tourette Syndrome Association" and "OCF", whatever you may think about them, serve to do for the Tourette's and OCD, respectively. We need to do the same for PANDAS. As I have said many times it's CREDIBILITY that's needed. There is not a single extramural NIH-funded (Swedo's work was inside the NIH, intramural) grant focused on PANDAS. There is a lot of work to do. Researchers ALWAYS follow the money - they have to in order to survive. To get where we need to go with this we need unity, credibility and persistence. Unfortunately, we have the added pressures of a difficult economy and impending health-care reform uncertainties. So more than ever, we need to fight the disease, not each other.

I agree, we seem to be talking as much as Mycoplasma and Lyme and other things as much as Strep these days. Although Strep seems to have gone out of fashion, it is still Public Enemy Numero Uno here, and probably always will be. I hope we didn't your feelings, strep ... Dr. T

--> QUOTE(Amy B @ Mar 10 2010, 07:24 PM) 59316[/snapback] Hi everyone. I'm not online all the time so you may have talked about this before. What about a Strep A vaccine. Do we know anything about it. I had googled it and they were working on something. I didn't see a whole about it. Is anyone working on it do we know. If this is a dumb or repeated question "Sorry". Just curious and hopeful. It is not a dumb question at all ... In fact, this man has been thinking about this for many years http://www.rockefeller.edu/research/facult...tract.php?id=40 This group is really Strep Central - started with Rebecca Lancefield in the 1930's continuing on through Avery, McCleod and McCarty, Zabriskie, Fischetti and (our own) Madeline Cunningham! I had the pleasure of interacting with some of these people in the late 90's when I first heard of PANDAS. Dr. T

This is based on my clinical experience, and not published data. Some of the very worse OCD exacerbations I have ever seen have have followed EBV infection. I've spent a lot less time thinking about viral triggers for PANDAS-like illness, largely because there is no effective treatment. About 50% of children have positive EBV tests by age 6. Dr. T

As many of you may know, I tend to use IVIG as more of a last resort than an initial therapy. IVIG is used extensively throughout adult neurology to treat a wide variety of conditions, many of which occur in the elderly http://www.ncbi.nlm.nih.gov/pubmed/12499469 I have not been able to find any evidence in the medical literature to suggest that IVIG efficacy for any condition trails off markedly after puberty. If anyone else has, please let me know. Almost all of the PANDAS patients I have treated with IVIG have been post-pubertal, young to mid-teens. Response has been very good and long lasting. Now that we are considering multiple etiologies behind "PANDAS-like" illnesses, i.e. not only strep but also mycoplasma and "Lyme-like" illnesses (Bb-lyme and anti-flagellin, it would seem to me that efficacy of IVIG likely depends more on the underlying etiology rather than before or after puberty. If the idea of "accumulation of co-infections" is an important one in PANDAS, the older one is, the more chance of accumulating co-infections - and perhaps increasing the difficulty of treating fully with IVIG That being said, Dr. K likely has more experience than any doctor in the world regarding use of IVIG in the treatment of PANDAS and his personal dataset on IVIG-treated patients is far larger than mine. I think Dr. K's views may have encouraged parents of older pre-pubertal children to expedite consideration of use of IVIG. I have a great deal of respect for Dr. K and his efforts, and he could be correct and/or simply looking at a different population sample. My point is IVIG should almost never be a rushed decision. It is serious immunomodulatory therapy. It is my opinion that, other perhaps in extremely severe (usually "Exorcist syndrome" level) PANDAS, one should carefully evaluate a child's immune system prior to giving IVIG. For example, it's fairly well-known that patients with IgA deficiency or anti-IgA antibodies are at much higher risk for adverse reaction upon IVIG infusion http://www.ncbi.nlm.nih.gov/pubmed/17923072

I have seen post-strep dystonia. Does your son or daughter take any medication? Even mild D2-blockers in an irritated brain can swing chorea into dystonia. One treats this exactly like PANDAS. I mention this in my 1996 PANDAS variant paper. I would also consider an entity called anti-NMDAR. I'd be happy to talk to you about this - best way to contact me is trifmd@gmail.com Dr. T Dr. T Ooops! meant 2006 paper.

I have seen post-strep dystonia. Does your son or daughter take any medication? Even mild D2-blockers in an irritated brain can swing chorea into dystonia. One treats this exactly like PANDAS. I mention this in my 1996 PANDAS variant paper. I would also consider an entity called anti-NMDAR. I'd be happy to talk to you about this - best way to contact me is trifmd@gmail.com Dr. T Dr. T

Clostridium difficile is flagellated, and low-level persistent C.Diff infection could manifest as anti-flagellin antibodies. What a disaster if that is the case, we are seeing anti-flagellin antibodies in all kids with a PANDAS-like picture. Many of these children are on chronic antibiotics - what to do then? . One possible loophole though - the C.Diff flagellum has a molecular weight of 39 (not 41) kilodaltons and should be distinguishable from p41 on a good-quality Western blot. Dr. T

Yes, there are regional differences in tick-borne diseases. The better tick-borne labs are the best source of information about these differences. For instance, Igenex actually has different panels set up for the different U.S. regions. See http://igenex.com click on "what to test for" and scroll down. See also my post on testing suggestions on this forum, although it doesn't account for regional differences: http://www.latitudes.org/forums/index.php?showtopic=7246 I'm aware of the "East Coast" and "West Coast" panels that Igenex offers, and I apologize if I was unclear, I was asking if there is a sense that there is a clinical difference between Lyme on each coast. This has always been an issue in "American" vs. "European" Lyme, not sure if there is a consensus on whether there is a clinical difference among continents. Dr. T

Dr. T, You need to read Cure Unknown for a good overview of the Lyme problem. Pamela Weintraub explains that the ticks that carry lyme can be found from coast to coast. There are sometimes regional characteristics but you can get the same lyme disease in NY that you get in California b/c the ticks are all over the country now. The midwest has a huge lyme problem but many do not know this. Likewise there is a huge problem in the South (NC and SC) but they do not know this. In fact the NC and SC Medical Boards have made it impossible for doctors to treat lyme in those states. They have found Lyme Disease in every state now. The CDC data on this is a gross underestimate of what is really going on. Another good book is Insights into Lyme Disease Treatment by Connie Strasheim. 13 LL practitioners share their approach to treating lyme. As I'm reading more deeply into Lyme literature I can appreciate a huge political component. Connecticut (the state where Lyme was born) just passed a law (66-0, I might add!) approving use of chronic antibiotics in Lyme disease. I wasn't aware of this until recently http://www.canlyme.com/Connecticut_Lyme_law.html I wonder if there will ever be laws ensuring treatment of PANDAS patients - I fear the cost-cutting measures of "evidence based medicine" are going to make treating PANDAS difficult in the future. Dr. T

I see a number of people from the West Coast posting here. Is there any sense that "West Coast Lyme" is different than the classical Connecticut-Long Island "East Coast Lyme" ? Bb-Lyme seems to be present in most of the east, as far south as mid Alabama, as far north as Maine, as far west as Illinois. It seems to be less common in the midwest (especially the Rockies) but common again up and down the West Coast. I know there are other spirochetal illnesses (i.e RMSF) that are more common in the Rockies than here, so no part of this country seems to be free of spirochetes. Since I've had the pleasure of talking to people all over the country, I feel I better learn more about the geography of infectious disease Dr. T

Yes, Bat-Sheva that is the big question! Does the persistently high Mycoplasma IgG just reflect a residua of an old infection or indicate a chronic persistent infection ? I have searched hard for a few weeks now and can't seem to find an answer to this .... From all that is known about the in vitro behavior of M.P. it is a nasty tenacious obligate intracellular pathogen that is the bane of all that work with cell cultures - and that is a whole lot of biologists and medical scientists! So why would one think it should behave otherwise inside the body. I'm voting for elevated M.P. IgG = chronic persistent infection, and treating according to that assumption, until someone can show me literature to the contrary! Dr. T Prevalence of IgG in the youth population is known and normal, nothing new there. What the article did not reveal is how long after an actual infection is the IgG supposed to be high and rising, and does an on going rise in IgG (say, for 5 years, as in Sandra's case) an indication of persistant presence of M-Pneomoniae.

My dd had complete resolution of gut issues with IVIG. Good luck to you!!! There's surprisingly little on this. More "sophisitcated" immunosuppresants like infliximab (anti-CD antigen monoclonal antibodies) are now being used in Crohn's. However, when it was tried years ago, it probably worked http://www.ncbi.nlm.nih.gov/pubmed/3490055 I know what you are going to be thinking - why don't we try something like infliximab in PANDAS? - maybe we will one day, but these are pretty dangerous drugs that I would use with trepidation. Dr. T P.S. Infliximab may be better know to some of you as Remicade http://en.wikipedia.org/wiki/Infliximab Now TNF-alpha may be very important in PANDAS .... that's what TLR over-activation is very good at generating ... but it costs $20,000 per year! So it could be Murphy's Law (or a corollary thereof) again: the only truly effective therapies are prohibitively expensive to those who need them! Dr. T

My dd had complete resolution of gut issues with IVIG. Good luck to you!!! There's surprisingly little on this. More "sophisitcated" immunosuppresants like infliximab (anti-CD antigen monoclonal antibodies) are now being used in Crohn's. However, when it was tried years ago, it probably worked http://www.ncbi.nlm.nih.gov/pubmed/3490055 I know what you are going to be thinking - why don't we try something like infliximab in PANDAS? - maybe we will one day, but these are pretty dangerous drugs that I would use with trepidation. Dr. T

The "Cunningham test" (the name used on this board, not yet widely accepted in the medical community) refers to a special, and as yet research level, test run in the laboratory of Dr. Madeline Cunningham in Oklahoma City. Dr. C is a well-known and world-reknown researcher on strep. Basically the test involves drawing blood and measuring levels of four particular antibodies in serum. These are antibodies to an enzyme called CaM-kinase2 (CAMK2; calmodulin-dependent protein kinase II) as well as three other antibodies (that seem to be less important). One's level of serum antibodies to CaM-kinase 2 appear to be able to predict whether one has infection-related vs. non-infection-related tics or OCD. The most common cause of "infectious related tics and OCD" seems to be streptococcus, and goes by the name PANDAS, but now other causes, like mycoplasma, are becoming recognized. This is the best reference for this tests http://www.pandasnetwork.org/CunninghamJNICaMKinase.pdf See Figure 3 in this paper. Also see www.pandasnetwork.org for more basic information on PANDAS. I hope this is not too technical! Dr. T

When I was a medical student at Johns Hopkins, I had the distinct pleasure and privilege of having this man as my attending in medicine for a month. This was in 1984 or 1985, and it was the last time he formally taught medical students. http://en.wikipedia.org/wiki/Victor_A._McKusick He was a God among mortals, but carried himself like a humble priest. I remember him telling us "we are all eternal students". It's hard to believe that this fellow you encountered who "doesn't believe in this" and "doesn't believe in that" has the nerve to put the same two initials after his name as Dr. McKusick. Sadly , we all get to put MD after out names ... so many patients still are awed by the mystique of those letters. There are doctors and then there are DOCTORS. Ye shall not know them by their white coats. Ye shall know them by their fruits. Sorry for the rant, this stuff peeves me off. Dr. T

Interesting. This patient was strep antibody negative. Not clear if she was tested for mycoplasma http://psy.psychiatryonline.org/cgi/reprint/50/4/425 Is there any parent who may have a child or a history of Crohn's or other inflammatory bowel disease? Dr. T

I do not plan to collect any data on this forum. Thank you for clarifying this. Dr. Trifiletti

I have a strong interest statistics and am an "R" and "S-plus" junkie for many years. The idea here would be exploratory data analysis where R and S-plus really shine. I'd love to talk to whomever is interested in doing this, other math/stat/computer junkies (PM). I've served as a statistician on a number of published papers but could use help from anyone with time, energy and interest. I could propose some sort of data collection instrument. I want to make this as "red-tape free" as possible. Dr. T

Somebody made a "2026" comment which got me to thinking how can we speed this up - and so my post followed I think the high quality of everybody's contributions on this forum (undoubtedly in part because of the fact that you've been forced to become experts in order to advocate for your child) is a proof of concept that this idea might work. I can think of a thousand pitfalls - as a father of two teenage girls, I always think of all the child molesters that thrive on social networking. So, with any free societal structure, it's easily abused. As long as there is a relationship built on trust and "self-police-ing", it should work - as it has in many other places. But this is medicine and people's lives that we're talking about here, not a fan club or dating service. How do we incorporate many doctors, with their differing opinions, personalities and (yes) egos into this process? How do we convince doctors that they are not going to get sued by thinking out of the box. Some way of indemnifying doctors that participate. This might be the hardest problem of all! I have some ideas. One is: the patient community elects a panel of say 6 doctors to participate to begin with, a sort of think tank . Each such doctor is offered an opportunity to participate, and the participating doctors decide amongst themselves how best to divide labor: one work say on basic science, another on epidemiology, another on clinical definition, another on treatment, etc. The think tank meets quarterly in cyberspace (i.e. Webinar) to discuss findings. Parents of patients are invited to attend. The think tank meets in physical space (rather than cyberspace) once annually at a conference Every so often, the patient community holds elections to renew/enlarge the think tank. Ubuntu. The data belongs to no one and belongs to everyone. Dr. T Do you think anyone (I'm thinking Google, Microsoft) might fund development of this process?

Dr. T., Have you ever tested your patients who are band 41 positive with the Igenex test to see if they have bands 31 and 34 also? No, I literally began finding this over the past few weeks. If you just ask for "Lyme titers", you will come up empty as Western blot done only as a reflex if titer exceeds a pre-defined threshold (<0.91 in my geographic area). Now I routinely ask for LYME WITH WESTERN BLOT, and we find the p41 IgG and IgM bands in almost all "PANDAS" patioents (LabCorp testing in most patients). There is so much BS about lime out there I have to follow my gut instincts (no pun intended) You bet these patients need thorough Igenex testing for p31 and p34 at least. Would you also recommend the Igenex co-infection panel? Also, can you send me any contact information on Dr. Charles Ray Jones? (you can reach me best at trifmd@gmail.com) I'm going to start to screen for common flagellated enterics as well. Dr. T That is interesting. I told my lyme doctor about this today. Your observation dovetails with my lyme doctor's comment that 60 to 70 percent of the kids he treats with PANDAS are also infected with lyme or a co-infection of lyme. The lyme specialists we use are more than wiling to share their knowledge with other doctors. Both my doctors allow other doctors to come shadow them to learn about treating lyme. I will email you contact info for Dr. Jones and my local holistic lyme MD. Dr. Jones does a lot of testing for lyme and the co-infections every time we see him. He repeats the tests after antibiotic treatment b/c sometimes a negative test turns positive with treatment. Apparently the co-infection tests are highly unreliable too-you can have it but not test positive. Tomorrow I will pull out my kids' tests and note which tests he runs and email you. Lyme Mom Dr. T, These are the tests that my lyme specialist doctors ran on my kids: Igenex Western blots (igg and igm) and Specialty Labs Bartonella Henselae Igg and igm abs. Also Dr. Jones tested for other coinfections with babesia fish (rna) and babesia duncani antibody panel from igenex. He also tested for mycoplasma Pneumoniae igg and igm, Human Granulocytic Ehrlichia HGE, E chaffeenis-hme (monocytic) igg and igm and mono and epstein barr and strep tests from labcorp. One note of caution-these co-infection tests are unreliable b/c there are so many strains of these co-infections. For example, there are 13 known strains of Babesia and they can only test for two. My son tested negative for Bartonella at least 4 times and yet he clearly has it b/c he didn't get better until rifampin was added to his antibiotic regime. Dr. Jones would check him for a Bartonella rash at every visit (cat scratch marks on the torso). One day 18 months into his lyme treatment it finally showed up, an unmistakable Bartonella rash on his chest. His doctors think it was part of a herx or die-off. lyme mom Do you know if insurance will cover Igenex testing? A few parents have asked about this. Dr. T

Hi everyone, It just dawned on me ... Traditionally clinical research is done at some large institution, say the (John) Mayer Clinic (names changed to protect the innocent) 1. Dr. X, usually based on prior or often his own basic research formulates a hypothesis. Patients' ideas and observations don't figure much if at all in this step. 2. Dr. X attempts to "recruit" patients into his study, which must first pass an Institution Review Board, and many logistical hurdles. All sorts of safeguards are placed to ensure that the Mayer Clinic does not get sued. 3. Many months later, once those logistical hurdles are cleared, Dr. X opens his study 4. A year later, enough people have called Dr. X's office so that he has enough data to write a pilot grant to the NIH 5. Six months later, Dr. X finds out that his grant is just short of the threshold for funding 6. He submits another version, and prays - the Mayer Clinic is beginning to put pressure on Dr. X to bring in funding. After much white-knuckling, Dr. X finds his study is funded 7. Several years later Dr. X completes his study and finds out that his hypothesis is wrong 8. Dr. X is "non-renewed" (i.e. fired) by the Mayer clinic Dr. Y, newly hired by the Mayer clinic to replace Dr. X, is inspired by Dr. X's work, and decides to embark on the same program as Dr. X Dr. X, although disheartened, decides to try something new .... There is something magical going on right here which might be a model for the way we do clinical research in the future: 1. Parents of patients (or with adults, patients themselves) tell their histories, make observations, discuss lab values 2. Interested doctors observe the proceedings 3. Doctors and parents formulate new hypotheses 4. Doctors set in motion ways to test the hypotheses by testing and treating patients (there's the rub) 5. Communal feedback on test results and treatments 6. Refine hypotheses and treatments to obtain improved diagnosis and treatment What is the role of outside parties like the government and instiutions? really two-fold that I can see (but they are huge): ensure confidentiality and safety. This has got to be incorporated in version 2.0 of the proces. In the past 2 months alone, we've learned about mycoplasma and the p41 (anti-flagellin) connections by the new process. I'm sure there is more to come. Can you appreciate how this rapid feedback iterative model VASTLY accelerates early clinical research? In the past, local doctors did this one patient at a time Now, by using the "social networking" features of the internet, we can do it on large populations, i.e. statistically significant numbers. The revolution will not be televised. But it will be broadcast on the internet and you are part of it! Dr. T

I agree, early strep infections seem to do something profound to the immune system, that's perhaps why they seem to "kindle" the development of other infections. The infection is the root cause, and early on at least the infection is frequently strep. Then, the triggers tend to blur into one another. So the best time to try to cure PANDAS is very early on. This is where we most often see the "one pill wonder cures" where one dose of zithromax totally cures a tic disorder. Once persistent infection after persistent infection begin piling on, cure is still very possible, but sometimes harder to achieve. The theme of co-infection is usually very important in the older (>10 y.o.) child with the PANDAS-like picture. It will be most important then, in any education campaign, to let parents and docs know about the early signs of strep infection (the compulsive urination, etc), just as is done in autism. Dr. T

Dr. Fallon and I have shared quite a few patients over the years. He is a terrific doctor and person and I have no reservation in sending any patient here to him in whom a Lyme-like illness is suspected. I will contact him. Dr. T