norcalmom

wow interesting.

shadow - what kind of immune deficiency ?

actually just found out he didn't have either. we went back and checked his immu's - he missed the cut off date by weeks for this. Born in 1999, the year they started recommending this vaccine. Immunologist I met with last week says it doesn't matter - he should make the antibodies regardless, he's been exposed to the virus (undoubtedly - he had pneumonia twice). So, today we draw blood for B-cell subsets, which is another way to look at the function of these antibodies. Not as good as revaccination(or for my son - vaccination), but another way to look at what is going on to confirm that this is an issue. It may be a non-issue. Since he doesn't get frequent bacterial infections (for example -pneumonia twice a year, which is when my insurance considers it problematic enough to cover ivig) Have you ever checked your sons titers?

No enough responses to see much yet, but it does seem that those with Lyme likelihood of chronic strep...(or vice versa). Is there anyone out there that has lyme, and doesn't have chronic strep (or history of recurrent strep infections)? But still has all symptoms of pandas? We only had one respondent that said their child only reacts to strep. 3 folks are PITAND 5 are Lyme and Chronic Strep (and other coinfections in 2 of those 5) I almost feel I can't classify peglem - because her daughter has been so sick for so long. she thinks chronic strep, not tested for lyme or other, some of highest cam K and antineuronals. Very little delta in baseline to exacerbation, and non-identified triggers or non-viral triggers included. also - Michael, is an "outlier" - no offense!! Totally appreciate the input feedback and information. Just don't have a group to put you in for this. All the info is greatly appreciated though. Also seems that the people that say they have a chronic infection - have non-typical presentation. Either they get elevated and stay that way, or they aren't sure what is setting off excerbations, too few replies to say at this point, but possibility. Unfortunately, I have to assume that only those with Lyme, actually checked for lyme. So, bummer there. Anyone else want to share?

Philly Have you checked both your kids for chronic infection? Its a pain in the butt - but worth doing. Chronic mycoP does not go away on one anitbiotic alone. I'd recommend the PCR testing - the igg and igm are only telling if you have an active URI. Since your kids just had it, they will probably have elevated IgG regardless - and the IgM usually only is high in the early part of the disease. My son's igG was 2450. No IgM. I have several different opinions of what that could mean, so now have to do the PCR test - should have just done that in the first place. Does your child make strep pneumoniae titers? Just curious - my son has issues with that (only makes one of 14, and I won't revaccinate) So, I'm wondering if mycoP kids also have this strep pneumoniae issue. While we can protect kids from strep throat, I don't know if there is anything that can protect them from mycoplasma (or strep penumoniae) if they are incapable of making this antibody.Chronic mycoP has phcyological and neurological symtoms. Also, its known cause of autism. If you are going to do PCR testing, go to a lab that will tell you the strain. Below is link to a lab that does this testing, but your immunologist or infectious disease may have a lab as well. We are looking into Lyme too- and if you are interested in that (and I'd suggest it - since mycoP is very common in people with lyme). Also, a big pain in #$%! Yours was a good analogy. Our son's didn't go on for that long before ivig - I could see part of his city was being bombed. And now, he is backsliding after ivig (7 months ago - he still reacts to viruses) and his "baseline" is sliding in the wrong direction. So, I'm looking at another, in conjunction with investigating and treating any and all possible chronic infections. Basically the treatment is different antibiotics, rotated in, probably in somewhat higher doses and sometimes in combinations depending on type of infection they have. In lyme (and other chronic infections?) I've read that it causes immune system dysfunction. Which leads to getting other infections (and basically messed up immune function - exactly what our kids have). I'm not saying that all pandas kids have this. I believe that there are several causes of pandas. Lyme, strep, mycoplasma..perhaps more. And perhaps in conjunction. Swedo is already writing the study criteria for PITANDS. I just wish we were in on the fact they know what else causes it. We should all be checking for mycoplasma and lyme as well. God knows I've done sooo many tests on my kid - whats a few more - esspeically if they are tests KNOWN to cause the symptoms (and the high cam K / anitneuronals) So - multiple chronic infections. Here is a link to a page fromt he bioloigist that discovered that Gulf War Syndrome was really mycoplasma. He's a bit of a conspiracy theory guy when it comes to war (be believes that exposure to weaponized mycoplasma, along with the 20 or so vaccines the soldiers got just prior to deployment casued Gulf War Syndrom, as well as a HUGE number of austistic children born to these infected soldiers) - but if you can get beyond that (not that I don't believe it, I just have no room in my brain for it)- and look at his papers and research on chronic infection, it seems to make sense. He has a list of common coinfections - once you have one, much more likely to have more because of immune dysfunction (his theory not mine - but he ran the tests to see the % of coinfections). And strep - nothing that says that your kid doesn't also get strep and react to strep. So an underlying chronic infection + strep = immune system cluster#$%& in our kids. Interestingly enough - Cunningham's got a paper on Cam K and lyme..and guess what they inject the mice with? ...strep. Something about the strep antigen and lyme antigen (b.burgdoferi) proteins being so similar....I don't understand the paper very well, and it looks to be investigating heart and joint aspects of lyme (this is how cunninhgam fell into the pandas stuff - investigating cam K and heart issues after strep infection - the whole ARF and Syndeham Chorea connection) - but its clear she is making connection between lyme and strep on molecular level. Below is an excerpt: ___________________ We first compared amino acid sequences of Streptococcus pyogenes M protein, a known inducer of antibodies that are cross-reactive with myosin, and B. burgdorferi and found significant homologies with OspA protein. We found that S. pyogenes M5-specific antibodies and sera from B. burgdorferi-infected mice reacted with both myosin and B. burgdorferi proteins by Western blots and enzyme-linked immunosorbent assay. To investigate the relationship between self-reactivity and the response to B. burgdorferi, NZB mice, models of autoimmunity, were infected. NZB mice infected with B. burgdorferi developed higher degrees of joint swelling and higher anti-B. burgdorferi immunoglobulin M cross-reactive responses than other strains with identical major histocompatibility complex (DBA/2 and BALB/c). These studies reveal immunological cross-reactivity and suggest that B. burgdorferi may share common epitopes which mimic self-proteins. These implications could be important for certain autoimmunity-susceptible individuals or animals who become infected with B. burgdorferi. and here is a different study - Chandra not cunningham - saying basically same thing for lyme- ____________________________________ Brain Behav Immun. 2010 Aug;24(6):1018-24. Epub 2010 Mar 18. Anti-neural antibody reactivity in patients with a history of Lyme borreliosis and persistent symptoms. Chandra A, Wormser GP, Klempner MS, Trevino RP, Crow MK, Latov N, Alaedini A. Department of Neurology and Neuroscience, Cornell University, New York, NY 10065, USA. Comment in: Brain Behav Immun. 2010 Aug;24(6):1025; author reply 1026. Brain Behav Immun. 2010 Aug;24(6):1027; author reply 1028. Abstract Some Lyme disease patients report debilitating chronic symptoms of pain, fatigue, and cognitive deficits despite recommended courses of antibiotic treatment. The mechanisms responsible for these symptoms, collectively referred to as post-Lyme disease syndrome (PLS) or chronic Lyme disease, remain unclear. We investigated the presence of immune system abnormalities in PLS by assessing the levels of antibodies to neural proteins in patients and controls. Serum samples from PLS patients, post-Lyme disease healthy individuals, patients with systemic lupus erythematosus, and normal healthy individuals were analyzed for anti-neural antibodies by immunoblotting and immunohistochemistry. Anti-neural antibody reactivity was found to be significantly higher in the PLS group than in the post-Lyme healthy (p<0.01) and normal healthy (p<0.01) groups. The observed heightened antibody reactivity in PLS patients could not be attributed solely to the presence of cross-reactive anti-borrelia antibodies, as the borrelial seronegative patients also exhibited elevated anti-neural antibody levels. Immunohistochemical analysis of PLS serum antibody activity demonstrated binding to cells in the central and peripheral nervous systems. The results provide evidence for the existence of a differential immune system response in PLS, offering new clues about the etiopathogenesis of the disease that may prove useful in devising more effective treatment strategies. ____________ you can also find case studies on mycp and autoantibodies (anti neuronals) but no big studies. Swedo mentioned that they did a small study of 5 kids - 2 with mycoplasma - (one chicken pox, one chicken pox vaccine and one H1N1 I think)(listen to her recent blog talk radio interview) - I think she called pandas subgroup. I haven't been able to find that study, but basically kids presented just like pandas. They had pandas (except the autoimmune component wasn't triggered by strep but by other infection). Here is a link to that microbiologist that has done a lot of mycoplasma and chronic infection research. Ithink he has his protocat for treating chronic infection (or chronic mycoplasma) on there somewhere. immed.org Please let me know what you find, or have already found on other infections. We are in the middle of our hunt right now. I'm even doing antibiotic challenge on myself for lyme, to make sure DS didn't get from me (I'm from lyme territory originally and my sister had it, and I've had sooo many old neighbors that had it, I feel that if DS has a lyme issue - he probably go it from me, since he has very low risk of tic exposure), but I've had many tic bites.

yes. alot of kids don't have high titers. or titers at all. other infections can set off this pandas auto-immune reaction. lyme, mycoplasma (who knows what else - those are 2 that cunningham and swedo are on record for citing). So, weather your child is infection free, and only sufferes fro the post infectious part is the question - and why many of us are digging deep to make sure we have rid the kid of any possible infections (which will just make them replase). WE have minor immune stuff going on - but minor - at least not major enough for insurance to consider it an issue. we have immunologist working on one last autoimmune thing - ds doesn't make pneumoniae titers - but since he doens't get pneumonia or bronchitis, it ins't considered an issue. Normal people would revax and see how child reacts - but I'm to chicken to vaccinate. Weather or not immune issues will get worse the longer it goes untreated is another question. according to some information on pandasnetwork.org - about 15% of pandas kids have immune def. or immune related issues. And less than half have high strep titers. So, you are actually in the majority. Does your child get worse after viruses - or only strep - or is she just in constant exacerbation?

Pillly - what kind of response did your kids have to the ivigs ? Did you see big improvement until they got sick? Did they recover quickly from the mycoP - did the exacerbation last a while, or was is shorter than usual due to the recent ivig?

A cell phone on vibrate would be accurate description of mine as well- because it "pulses" riiiiiiing. pause. riiiiiiing. pause. Its very subtle - but can't deny it is there. Doesn't matter if I change positions, or rub it, or tense my muscles, it continues in this vibrating/pulsing pattern.

I'm doing the antibiotic challenge for the Dot blot / PCR test. Frankly if it weren't for DS we would never do this (even llmd said this). I don't have any lyme symptoms. I am positive Igenex, just barely, and negative CDC. What is looks like is I had exposure and either my very strong immune system took care of it appropriately, or the disease in in area it presents no symtoms (and or cystic)...and its been that way for 30 year. LLME did say that doing this could bring out the disease and make it active. (if it is still there). The ONLY thing (besides metalitc taste in mouth and diarhea from anitbiotics) that I feel is a very, very minor "vibration" that is pulsing on and off. I can 't even call it a tremor - it is that small. Its deep in muscle tissue, and is about the area of a square inch. ITs always int he same spot. (near buttocks, upper inner thigh) Its just weird. I did see someone post about virbrations/buzzing. Who else get this? I'm on enough antibiotics to choke a horse. - doxy, tindamas, and azith - all high,high, dose. But only for 5 days. What's the theory behind this vibration thing? Is this common, has anyone seen this come up on other Lyme boards? I really don't think I have it at this point - this test would have to light up like a Xmas tree to convince me - but the "vibration" thing is odd. cold be antibiotic side effect? I have NOTHING else that is symptomatic.

I'm doing the antibiotic challenge for the Dot blot / PCR test. Frankly if it weren't for DS we would never do this (even llmd said this). I don't have any lyme symptoms. I am positive Igenex, just barely, and negative CDC. What is looks like is I had exposure and either my very strong immune system took care of it appropriately, or the disease in in area it presents no symtoms (and or cystic)...and its been that way for 30 year. LLME did say that doing this could bring out the disease and make it active. (if it is still there). The ONLY thing (besides metalitc taste in mouth and diarhea from anitbiotics) that I feel is a very, very minor "vibration" that is pulsing on and off. I can 't even call it a tremor - it is that small. Its deep in muscle tissue, and is about the area of a square inch. ITs always int he same spot. (near buttocks, upper inner thigh) Its just weird. I did see someone post about virbrations/buzzing. Who else get this? I'm on enough antibiotics to choke a horse. - doxy, tindamas, and azith - all high,high, dose. But only for 5 days. What's the theory behind this vibration thing? Is this common, has anyone seen this come up on other Lyme boards? I really don't think I have it at this point - this test would have to light up like a Xmas tree to convince me - but the "vibration" thing is odd. cold be antibiotic side effect? I have NOTHING else that is symptomatic.

oops double

oops

lots of Irish. Maybe we've all kissed the Blarney Stone and that is why were here. Dr K also has some phenotype on his website - stating that the pandas kids are early talkers, and the moms are mathematical and or OCD-ish themselves. I think more likely that highly educated and driven moms are the ones that found him. And, hey I was NOT OCD before this whole thing started. I was very laid back. And it goes against my nature to track every little thing. So pandas GAVE me OCD! I think rheumatic factor - isn't that the risk for SC - its some measurable genetic factor - is it more common in northern europeans? the B lymphocyte 8/17 marker looks like something that presents a high risk genetic group. I've not seen that is found more often in different ethnic groups. I don't know why this isn't one of the tests we give our kids. I know we didn't get it. Maybe its very specialized/expensive. PLUS - aren't there some active SC studies being done in South America - because it is still found there? Below s is from http://www.pedrheumonlinejournal.org/April/reviewarti.htm The articles is actually a pretty good summary of the connections between rheumatic fever, SC, and pandas, from a pediatric rheumatology online journal. OK now for a joke...have you heard what the perfect idea of heaven is? A place where the cooks are Italian, the cops are Irish, the engineers are German and all is run by the Swiss... And ###### is.. A place were the cooks are Irish, the cops are German, the engineers are Swiss and all is run the the Italians! And the pandas version- A place where all doctors know pandas, your neurologist is Latimer, antibioritcs and ivig work immediately, and insurance covers everything! ###### would be- the only doctors available are Kurlan or Singer, the neurologists are all from Yale, and the only insurance provider is Aetna! seems we are in "limbo" _________________________________________ Is this an Immunologic Process? The biologic evidence that PANDAS in an autoimmune-mediated process is compelling, but not conclusive. A potential B cell marker was identified, magnetic resonance imaging of the brain demonstrates basal ganglia changes consistent with inflammation, and immunomodulatory therapies have been studied with benefit in some patients. Antibiotic prophylaxis, although effective in ARF, remains questionable in PANDAS. D8/17 Lymphocyte Marker The B cell marker D8/17 was identified as a predictor of ARF and SC, diseases recognized to have genetic susceptibility. The cell surface marker was discovered on a subset of HLA-DR positive B cells in the peripheral circulation, and the alloantigen was recognized by a monoclonal antibody labelled D8/17[15], a mouse monoclonal IgM antibody[16]. Testing involves staining peripheral B cells with the antibody and counting positively stained cells. A positive result is defined as greater than 11.8% of B cells stained (one standard deviation above historical comparison values). The percent of antigenic expression is inherited, either in an autosomal recessive or autosomal dominant manner with variable penetrance [15]. The D8/17 marker has high sensitivity for ARF, in that 90 to 100% of individuals with ARF are positive regardless of the disease activity. In initial studies, the marker’s specificity was high, as only 5-15% of healthy controls had positive expression. Therefore, it appeared to function as a trait marker for ARF. Additional support was provided when patients with poststreptococcal glomerulonephritis were found to express low numbers of positive cells. Siblings and parents of patients with ARF and SC also demonstrate higher numbers of positive D8/17 B cells than control subjects [17], which lends further support to a genetic susceptibility to ARF. Based on the similarities of SC to other neuropsychiatric disorders, it was further hypothesized that the D8/17 marker might also be able to identify patients with OCD and TS. A group of 31 children with TS and/or OCD and 21 healthy controls were studied [18]. All patients positively expressed the D8/17 marker versus only one positive among the control patients. A subsequent study examined 27 children with PANDAS, 9 children with SC, and 24 healthy controls [19]. Eighty-five percent of the PANDAS children were positive, 89% in the SC group were positive, and only 17% of controls were positive (p<0.0001 for both comparisons). These results support the hypothesis that there may be a group of children who are susceptible to developing PANDAS instead of SC or other manifestations after streptococcal infections. Testing for the presence of the D8/17 marker cannot alone differentiate children with TS and OCD from those with PANDAS since in the first study 100% of OCD and TS patients were positive for the marker, regardless of levels of antistreptococcal antibodies. Additionally, as this test is not commercially available, it’s utility in the diagnosis of PANDAS remains unclear.

This has probably been posted before, but this article explains everything in very simple terms. Best I've come across. I'm only half way through, but everything from why he CD57 is important, to chronic lyme vs newer infection, to what chronic lyme does to the immune system, to to testing, co-infections and antibiotics seems to be covered. And its pretty easy to read, even for a newbie like me. enjoy! http://www.lymediseaseresource.com/BurrGuide2008.pdf

smarty - I should probably fill this out for my son. Its so interesting to see everyones replies. I like seeing all the stories and data together in one place and seeing how everyone is currently treating and what is working. This is better than a survey - because in the survey you only see the results numerically, you can't read the stories. They are too limited. I admit, I wasn't going to spend the time doing the survey monkey if people weren't interested in this subject.so I took the lazy way out with this post. But now, reading through all this, I like the antecdotal format. Perhaps someone reading it will see some connections that I would miss or that survey monkey doesn't capture by crunching the numbers. My son gets more than 10 symptoms in exacerbation...almost the whole list..He's still functional though. Yes, hard to say how people group things. OCD has many facets, and some people may not be able to see the forest for the trees. It wasn't until I started to read about reassurance questions that I realized that my son had this - its not a "10" like his tics - couldn't miss those in exacerbation. And bedwetting, well, little boys wet the bed sometimes...we saw ALOT of things as normal, that we now know are not. Stuff we didn't even know was a symptom - disappeared after ivig. so, mild and subclinical, and during exacerbation the least of our worries - we were focused on the "top three" for him - which were/are - intursive thought OCD triggered my me swallowing, compulsion to look into the sun, and math/hadwriting and perhaps a bit of ADHD (basically school issues that were effecting self esteem).

My son is 1/2 Irish, 1/4 Swede, and 1/4 German Jew .

hi all- I dont' know if we have critical mass enough to do this on the board, but I'm trying to see if there is anything that distinguishes lyme/chronic infection kids from those that don't have any infections. Granted, most of us can't prove we don't have any...and that is the point of the survey. Its for those of us that have scant information. So, how to treat it - treat just the post infectious immune disorder? Or treat for chronic infection as well (or instead). Are there any distinguishing features? Thats what I'm trying to find out. so, if any of you that know you have lyme, can take a moment of time to read my last post on the pandas/pitand page and respond, I'd appreciate it. Maybe there is no difference, but that tells us something too. Also, please add in any other symptoms that are not listed there. Only pandas symptoms are on the list. I did not include joint pain or fatigue or more typical lyme things (don't know what they are). But maybe I will soon - I just started my provocation test today so who knows...I only want to vomit from all the meds so far. Right now I'm looking at both another ivig as well as more heavy duty antibiotics. I feel good about neither. I'd like to avoid at least one, but I will not let DS slip back to where he was prior to first ivig, and I know that worked for him. He has self harming behaviors, so I don't really have the option of waiting to if antibiotics will work, or making it worse with a herx...rock and a hard place. Thank you!!!

Michael - thanks, this is helpful. I'm especially interested in your "exacerbations" - when I use this word, I'm referering to a fairly long period of time, about 4-6 weeks, of very bad symptoms, and usually adding symptoms that were not there before. For example if you had 4 or 5 symptoms, and they were a "4" in severity...then almost overnight, you had 8 sypmtoms, and all of them are a 9 or 10 in severity - and they say that way for weeks. You say that environment would do this to you - was it as long lasting, or did symptoms go away when the environmental trigger was removed? My son also has D3 on low side, but I'm reading with new recommendations - we're all low. Mine was same as my son's - I think we were both about 25, and we do supplements now. Need to recheck - thanks for reminder! Do you know how low most lyme patients are? Kayanne - thanks for reply and using color - much better than bold (could swear I checked for a way to color text before...now I se it!) right next to "Sizes". This is good..I may go ask some lymies to come over to this board to respond as well. Thanks again.

Hi all - thanks for taking the time to reply. My purpose is to try to get a few of the Lyme folks replying too, to see if there is anything different about their presentation. I just find it odd that some kids have clear exacerbations. Within days of illness, that last from 1 month to 2 months, and then return to baseline - sometimes a "new baseline"..with a couple more symptoms that do not remit. The baseline "creeps up" this is what happened to my son, and I've seen other folks post about that as well. I believe that in cunninghams' desk, in the file containing surveys that are sent in with the blood samples, weather or not there is a way to group our kids and therefore get better treatment, exists. I don't understand why a chronic infection would do this. I know there may be inflamation of BBB that lets in more anit-neuronal antibodies...but with EVERY illness? And, I did observe that with one illness - a stomach bug, my son had symptoms for 2-3 days only - only as long as the bug. With the other viruses, it would always be 4-6 weeks. It took a while for me to see the pattern, AND it took a little while for the pattern to develop fully. First 2 exacerbations were different (in retrospect). His first illness was several weeks prior to OCD, and tics were several weeks behind that. The other symptoms (about 7 from the list) came somewhere in there. They almost all gradually remited (over...about 2-3 months) and then he got a cough...two weeks later (at the end of his cough) ALL symptoms returned at the same time. Ever since then - all symptoms come within days of illness - often bedwetting and insomnia are a couple days ahead of everything else - including the virus. This is what I don't like about the "sudden onset" criteria. Is it sudden, if the symptoms were there before? And, Swedo has also said that this is a common pattern - it IS the pattern for SC. I just think most people miss the connection the first time, because it is spread out. Cunningham has said that kids exacerbationg have higher Cam K levels and antineuronals...so ..if that is true, its int' just the BBB inflamation. Also wondering if chronic infection causes higher Cam K II (like SC does). Or Lyme. Her new letters going out state that normal (non-pandas) kids have average Cam K II of 135 when they have an active strep infection. So, infection alone appears to raise these levels.(at least Cam K II, she does not mention anti-neuronals) Do Lyme and Chronic infection kids have this exacerbation pattern? Or lack of exacerbation all together? Maybe there IS no difference. And maybe trying to put these kids in different groups is for naught - perhaps they are all int he same group - perhaps, it isn't genetics alone that determine if your child is more likely to get pandas. Perhaps its is Genetics + underlying infection (chronic or otherwise) = pandas. In which case perhaps some kids will get better on appropriate antibiotic therapies alone. Perhaps some will need both antibiotic therapies, as well as ivig to correct autoimmune issues after the infection is cleared. Its just so exhausting to hunt for infections like lyme and mycoplasma (who know what else) ..You think pandas is controversial? HA! I'm now consulting with lyme experts, mycoplasma experts, pandas expert and immune expert. None of them agree upon anything! The data just isn't there, and none of them has seen enough kids of the different groups to tell if there are different groups- maybe its all the same? They each think my kid belongs in their group. So, which treatment to pick? Currently I'm leaning toward another ivig (like many that have had two..and that is what they needed). Why is that the case? either - the immune system was "retrained", or the antibodies from the ivig killed off the underlying chronic infection (that the child's own immune system was having trouble with) ...or both. (or the ivig reduces inflamation in the BBB and closes it to infection..which seems a minor component relative to the other two things, but almost none of the research I've read talks about this as the primary issue. T.Mom- thanks for your input. Yes, I'd like to do a survey monkey, but want to get some antecdotal info (and feedback like yours on the questions and how to pose them in ways that make sense) before sending it out, so it is better. Only have one shot at it. So thanks for pointing out some of my oversights. and, your question on exacerbation timing - I guess I'd have to say that if exacerbation lasts more than 6 months, it isn't episodic. Wouldn't child be exposed to illnesses in 4-6 months...and just appear to stay in exacerbation? perhaps I will just have another option for "different pattern" observed. For example - Saving Sammy - I'd put him in chronic infection, non-episodic group. Chronically high strep titers, and every time he went off meds symptoms returned. And he had to have very, very high dose of meds (did he ever get rid of that infections, or only bring the titers down? ). And the antibiotic was specific for his type of infection. Kim - will look at that, vaguely recall a long document where he tried to classify kids. Will revisti in light of new discoveries will be interesting! Thanks Tampicc and S &S - thinking of you - good luck in your recovery period. I think you will see alot of good things, but post ivig healing has some ups and downs. Best to you and your daughter. Waiting to see results is difficult period. I want to say that my son is VERY improved since ivig. I refuse to allow my child to go all the way back to where he was prior to ivig. Weather we do another, or heavy duty antibiotic protocol for (possible) lyme or mycoP infection, or both, that is what I'm trying to figure out. Peglem - thanks as always for taking time. Your daughter is very unique and we could learn a lot. Did you ever do any pcr testing for mycoplasma in her? There are some interesting reports of mycop and autistic kids. Acutally the parents of the autistic kids are the ones with the mycoP. One report said that 75% of kids born to solders that had gulf war syndrome (which was found to actually be chronic mycoplasma..possibly from exposure to weapnized mycoP and/or the fact that these soldiers all got about 20 vaccines prior to deployment) ..were autistic. That is a huge, astounding, number. Its a specific mycoplasma they have. Mycoplasma ferrmentans. (sp?). MycoP (not neccessarily that type) is a common vaccine contaminant as well. So both the parents and the babies had myco P exposure, as well as multiple vaccines. Babies had mycoP exposure from parents. Soldiers had it either from weapons or the 20+ vaccinations they got at one sitting prior to deployment (or both). Its interesting reading anyway. A bit conspiracy theory, but since your daughter has had this from very early age and has autistic presentation, thought you might be interested. Came across it in my mycoP research.

I've been going round and round on the whole chronic infection, possible Lyme, pandas, wheel for weeks now. Is there some symptom, test result, or presentation that might help us distinguish (even a percentage) of these groups from one another? To help decide the right treatment (or combination of treatments)? Below is a list of qestions. I'm going to assume anyone answering this has PANS - Pediatric Autoimmune Neuro-Phychological Syndrome (call it pandas if you want)..and may or may not know what triggered it. Perhaps those of you that do know for sure, can help those of us trying to figure it out. If we get enough response and it looks like there might be some correlation in this stuff, I will do a survey monkey and include more questions. input on questions welcome. Probably easiest to copy and paste the questions below and put your answers in BOLD CAPS so its easier to read. My child has: Lyme Chronic infection Chronic Strep Significant Immune Deficiency No known current infections What group is you child in? Group 1 - my child only reacts to strep. other illnesses do not cause exacerbation Group 2 - my child exacerbated, and stayed that way, we see very little difference between baseline and exacerbation, regardless of illness (like Saving Sammy) Group 3 - my child reacts to almost all viral illnesses. I see huge symptom flair within 1-2 days (either just prior or just after) a virus or other infection, and it takes weeks to return to baseline Group 4 - my child exacerbates, but we cannot tell what the tirgger or pattern is with the exacerbation. Group 5 - other presentation (describe) If you had a Cunningham's test - what was the Cam K, and which anti-neuronals were elevated? What symptom group would you put your child in: tics only ocd only tics first, and ocd came later ocd first, tics came later completely balanced How many symptoms do they have at baseline? (list them next to the appropriate group below (see reference list below) N/A - they don't exacerbate - its always pretty bad one 2-5 6-10 10+ How many symptoms does your child have in exacerbation? (list them next to the group below) one 2-5 6-10 10+ List of symptoms to pick from not limited to : tics, obsessions, compulsions, add/adhd, dialated pupils, urinary frequency, phobias, anorexia, body dysmorphia, reassurance questions, regressive behavior, rages/tantrums, insomnia, nightmares, hallucinations, bedwetting, separation anxiety, decline in math or handwriting, depression, extreme irritability, emotional liability, or other. What is your current treatment, and how is it working? Please note if your child had ivig or PEX prior to the treatment and what the results of that were. Thanks for your input and time.

Great article. Thanks for posting. I just skimmed thought it, and I'm a little confused about the cross reactivity to Strep, and why she injected strep into the mice in addition to the burgdoferi. Does this indicate that igg and igm for b.burgdorferi maybe elevated in auto-immunity prone induviduals, when it is actually strep causing the elevation (and vice versa?)

Steroids seem like a double edge sword. They reduce the immune response. But, they reduce the immune response. Making your kid more likely to get sick. And if your child is PITAND, that just means they will exacerbate again. Steroids don't make a lot of sense to me. Have you checked for all underlying infections - like chronic mycoplasma and lyme (and others)? I guess I could see using steroids if it was an emergency and I was ABSOLUTELY sure there was not an underlying infection, and my child would not be exposed to anyone that was sick for a while (how long? I dunno. We only tired steroids once. And on day 3 of the burst, my son got a cold. He probably was fighting the virus for a couple days prior to us doing the steroid burst (which is why I did the burst I could see he was starting to exacerbate and I wanted to nip it int he bud). In the end, it just made everything worse. The cold and the exacerbation.

I dont' know how old your child is, but Dr K will tell you that the older they get, the less likely they will remit completely with antibiotics. He also told us since my son was 11, the steroid burst was not an accurate diagnostic measure for him because he was older. He says it works better with younger kids that have not been sick as long. If there is an underlying infection, it will adjust to the anitbiotics. My son did well intially on Azith. We found high does better - so we left him on that. Eventually, it didn't seem to be doing anything. We never did the steroid burst before the ivig with Dr K. He felt it may or may not work given my son's age. And I was glad - I only tried the steroids once early on. DS was starting to exacerbate, we did 2 days of steroids and on day 3 he got bad cold (which was probably what was making him exacerbate in the first place, immune system fighting it off). Had to stop steroids, and I think made the exacerbation worse. (defiantely made the cold worse!). You may do some more digging for mycoplasma or other underlying infection. Switching up the antibiotics maybe more effective. We found DS had mycoplasma AFTER ivig (didn't do my due diligence and test prior to ivig - should have). Now have him on anitbiotic protocol for chronic mycoplasma. Doesn't mean we won't do another ivig if we need to, but ds is definately back sliding since last illness. Right now I'm seeing if the high does long term doxycycline will make some inroads. So far after 3 weeks, not really, but still early to tell.

yes - great article - thanks for posting. Just sent to a friend of friend that is starting on pandas. Its an excellent summary.

I have to wonder about people that don't have pandas and get ivig - do they get this side effect? My son had the migraine, and horrible vomiting. We just switched anitbiotics...and 3 days after antibirotic switch - vomiting. Not normal vomiting, like getting something out of his system (by the way, no one has any stomach bugs) it was exactly like ivig - every hour almost on the hour for 5-6 hours. Also, it occurred 3 days after the ivig. He also had a headache. Neither the vomiting nor the headache were as bad as after ivig. He never gets headaches. And like I said, no one was sick, so REALLY don't think it was a stomache bug. I'm now convinced it is a herx - a die off off of certain bacteria that produce toxins when they die - not a reaction to the ivig. My son has mycoplasma, which, like lyme disease, is known to cause herxing during treatment. since about 15%(?) of pandas kids get this reaction, I wonder if these are kids with underlying infections that produce herx response. Its actaully a good sign (killing the stuff off) but ivig might not completely get rid of it. As for the cycles - I have read on lyme board that certain co-infection in lyme is VERY cyclic (forget which one)...and I think the cycle is every 24 days. You'd have to check the lyme board information (or just google it) to confirm. Glad to hear she is doing well!