kim

Nothing that I say is intended to be any kind of medical advice. Anything I say is only intended for discussion purposes! I think what is most important to understand is that vaccines DO have an effect on the developing immune system that can have long term consequences. As an infant is supposed to be changing back to a TH1 or TH1/TH2 balance, seems we are forcing the TH2 (antibody response). I immediately think of my newborn son being injected with the Hep B vaccine. At that time, it contained thimerosal and aluminum. Hep B posed virtually zero risk to my son at that time. I didn't know it, but I had been tested and was negative. So my baby who had undergone the stress of birth and circumcision was injected with that vaccine for what? Did he have circulating autoantibodies from me that could have entered the cns due to the effects of thim/alum? Did that set the stage for future reactions to various antigens? INSERT BIG SPECULATION ICON As older children with many variables we may see differences show up. Do some children learn an immune tolerence, do the antibodies become exhausted, is there an immundeficiency (non antibody producers)? Over producers, well you can make a boat load of antibodies but it doesn't mean they work well, or very few that repond just fine. That is why I'm not a big fan of titer testing anymore. It may be better than nothing, but it really doesn't tell you how someone is going to respond to the real deal. Especially without a challenge. Jag, read this CDC statement regarding the pneumococcal polysaccharide vaccine. Near the end of the article it talks about the need for CONJUGATE VACCINE DEVELOPMENT which they DID develope. It says in children under 2 the antibody responses to the polysaccharide vaccine antigens are poor in this age group. Now read this http://www.cdc.gov/mmwr/preview/mmwrhtml/00047135.htm you will see the GlcNAc that I keep harping about referred to as the dominant group A polysaccharide epitope (not a quote there). Near the end it talks about speculation regarding a change from a T cell independent response to T cell dependent response. I really didn't want to get into that right now, but if you've followed this so far maybe you (or anyone)have some ideas there.

EAMom, Over the years it has occured to me that I have learned the most (in many instances) where people argued on threads. I mean some of them were down right nasty. They were, however, well informed people that were passionate about their subject. These forums (ACN) seem to be filled with some of the nicest people! I bet you and I can have different points of view here and still learn something from each other. I'm glad that you pointed out the inaccuracies in the blog regarding PANDAS. Who ever made the remark about speaking to Dr.s and repeating that type of misinformation and how detrimental it is, is sooo right. Ok, on this statement, I need to ask you something that I honestly don't know. I believe that mouse was a strain that was prone to autoimmunity? Have you ever read anything about the operation of the immune system during pregnancy or the infants immune system shortly after it's born? I'm not going to post a bunch of links, but Hilary Butler's article in the "adjuvant," thread is a good one. Basically, she explains how the TH1 (innate) shuts down during pregnancy so the fetus isn't identified as a "foreign," body and you are operating with the humoral (aquired...think antibodies here) or TH2 system, primarily. The baby and Mom will slowly switch back. Decided to pull some of that info out of the artcle. I'm going to post this much now as I'm just hoping to lay a little ground work so other info. might make more sense regarding vaccinations. I also want to add that I surely don't have this all worked out in regards to PANS or anything else, but I believe that the vaccination program as it stands today IS involved in messed up immune systems, along with environment genetics etc. http://www.whale.to/vaccines/butler.html excerpt

. I don't know if or how this might fit into your girls situation EAMom, but I was looking for something else and happened to see a remark in a paper on autoimmunity that said something about the failure to clear a pathogen not being the sign of a weak immune system but rather a tolerance. I didn't think much about it but it stuck in the back of my mind. When I was thinking about the N Acetylglucosamine being the target of autoantibodies, it made me wonder if that was why my one son never cleared after multiple rounds of antibiotics. He was also asymptomatic many times with positive cultures and was said to be a carrier. I don't claim PANDAS or PANS due mainly to the lack of sudden onset and I don't believe as severe as many children but have always felt there was overlap. I do wonder if stains that lack M protein could sit there untouched by the immune system because of a tolerance that would prevent harm. This is what I read regarding strains lacking M protein. The cite is Cunningham http://emedicine.medscape.com/article/971097-overview#a0104 Well, it says relatively avirulent so who knows.

PowPow, I have been meaning to get back to this thread. My family is however thinking I need "egg timer," controlled computer time again and they are talking about duct taping my mouth shut and making me watch episodes of House. I think this is their attempt at either punishment or a crude form of ERP. Anyway, I really glad that you remembered that vax reaction. I also wanted to share with you something that I would really want to investigate if you haven't already (with the guidance of an alt. practitioner or someone qualified). http://www.ncbi.nlm.nih.gov/pubmed/1627234 Are the fatty acids or phospholipids anything that you have investigated relating to your girls?

What I find interesting (and don't really have a good handle on) is that it appears that the antibodies in both PANDAS and rheumatic fever are reacting to the group A carbohydrate N Acetylglucosamine (mainly but not the same antibody). What I can't seem to get a handle on, is whether the M proteins contain this also? It appears from the diagrams that I've looked at that the M protein and the GAC (group A carbohydrate) are separate thingies. They both extend from the cell wall and are exposed at the surface. I believe GLcNAc is exposed on the surface of neuronal tissue too. This is one of the "self" components as humans have plenty of this too. There is a study that Novartis did on strep and I think they said that the people in the study responded with a wide range of antibodies. Are the ones who respond with an antibody that recognizes GlcNAc, the ones that are prone to problems? Another interesting thing. I read where "carriers" carried stains that were deficient in M proteins making the strains they carried very weak or non virulent. Just throwing some things out there in case anyone can expand on or correct where I'm off. http://pandasnetwork.org/CunninghamJNICaMKinase.pdf Antibody-mediated neuronal cell signaling in behavior and http://pandasnetwork.org/Cunningham.NMpaper[1].pdf Mimicry and autoantibody-mediated neuronal cell signaling in Sydenham chorea movement disorders

Carol, Do you have any of the details about what happened at the Byron-Bergen School? I can't find anything about it.

I don't know if this got buried on page 6 or if no one had any thoughts on it? Also Someone put up this remark I'm wondering if vaccines were discussed. Would anyone think to suspect how the increased load of adolescent vaccines might play into things? Was the HPV vaccine all that may have been suspect. It seems some girls developed symptoms prior to school even starting. I wonder if sports physicals and vaccines along with toxins and any infectious things that were circulating could have been part of the picture. Aside from alum or a thimerosal containing vaccine, just the sheer stress on the immune system may have been a catalyst too. If alum is a bbb toxin, seems autoantibodies might have an easier time getting through or even toxins in the environment affecting the brain more profoundly. http://vaccinexchang...-published2.pdf Aluminum Vaccine Adjuvants: Are they Safe? L. Tomljenovic*,1 and C.A. Shaw2 Finally, the neuropathological findings by Zinka et al. [98] are consistent with neurotoxic properties of aluminum adjuvants. For example, as shown by our group as well others, aluminum is a BBB neurotoxin [54, 99] that has a propensity to activate brain microglia and increase the production of inflammatory cytokines thereby instigating and/or exacerbating inflammation and excitotoxicity in the brain [31, 43, 44, 100-104].

Does anyone think ANA testing would beneficial? This article was out not long ago http://www.nih.gov/news/health/jan2012/niehs-13.htm NIH study shows 32 million Americans have autoantibodies that target their own tissues

Tonya, That is a great idea. I'm sure that the students and parents from Leroy would love to be able to communicate with the WBHS students. They may find your info on other forums (HLN/ Dr. Drew) prior to finding it here, but if anyone shows up, we can share your post. You might want to reach out to the uncle and father of a student (and another female student) that had a similar onset in Indiana. He is trying to establish a place where they can all connect too, although if PANS/PANDAS turns out to be the linking factors, this forum would be a great resource for them. Here is the link with the Indiana students info http://www.flutrackers.com/forum/showthread.php?t=177170 Are you aware of the condition, today, of any of the students that were affected?

http://drdrew.blogs.cnn.com/ Tonight: NY Medical mystery investigation continues

Thanks EAMom I totally agree with what you said. That's why I quoted you about hoping blood would be saved for future testing. When you read http://informahealthcare.com/doi/abs/10.1080/08916930500484757 well, I hope someone gets a chance to explain to them why that seems a whole lot more plausable at this point for these kids. How many antibodies are capable of doing this, what causes their creation and what would allow bbb permeabilty in so many, I guess is what they (Brokovich&Dr.T) are working on finding there. By the same token, if they are able to find any clues along other lines that may help someone without an autoimmune related problem, well that would be ok too.

EAMom did you read the post of mine above the one you quoted? Copied here...sorry if i confused you! Did anyone read something about the NIH wanting to test for a gene that normal people have that involves shaking? EAMom, a parent had shared this paper quite a while ago. At that time I don't think I really grasped it, but now I realize more about where they might have been coming from. I'm wondering if the "gene," testing is related? http://medicine.utah...ent_Handout.pdf Just wondering if you had any thoughts on the paper

Here'e the article (with the concern expressed in the last paragraph about having autoimmune testing done) I'm wondering if they mean an overexpression of those genes? Or if they mean an abnormality that is found in healthy people with no symptoms? http://www.wgrz.com/news/article/152438/1/Doctor-LeRoy-Students-With-Rare-Illness-To-Be-Tested-At-NIH

Did anyone read something about the NIH wanting to test for a gene that normal people have that involves shaking? EAMom, a parent had shared this paper quite a while ago. At that time I don't think I really grasped it, but now I realize more about where they might have been coming from. I'm wondering if the "gene," testing is related? http://medicine.utah.edu/neurology/research/swoboda/pnd/TH_deficiency_Parent_Handout.pdf

Chelsey says she became ill on Oct. 31st. I wish I had a better handle on the onset from kids in LeRoy only. Does anyone else know right off hand when any of the others started showing symptoms in Leroy? Weren't a few prior to school even starting?

http://www.wgrz.com/rss/article/152730/37/LeRoy-Student-Speaks-Out-About-Illness-Lack-of-Answers This is getting a little confusing, but I dont think this students video has been posted here yet?

I wanted to make sure that I had this right before I posted it. If you read "Diggers," posts he talks about his nephew and another girl with similar symptoms. THEY are in Northern Indiana. http://www.flutrackers.com/forum/showthread.php?t=177170&page=2

I sure hope Dr. T is aware of the situation in Corinth. Lori who is documenting the course of her illness comments ... Now there is a new individual in our town who started having tourettes, a very reputable adult female 1/27 Just a heads up, the new slideshow is so hard to watch http://www.youtube.com/user/rodeocowgirl131?feature=watch#p/u/0/kPZTJlIBJ7M Lori and Alicia are from Corinth across the state from LeRoy http://jamestown.ynn.com/content/all_news/571741/mystery-illness-gaining-national-attention/?ap=1&MP4 If you watched Lori's slide show, I just had to point out this video Listen to what the New York "Dr." advice was TAKE THE OTHER PATH Learn to relax.... http://www.youtube.com/user/rodeocowgirl131?feature=watch#p/u/2/trFCDibrKVo

PowPOW, Not exactly. http://rheumatology.oxfordjournals.org/content/45/7/833.full.pdf pg 838 left side of the paper on this one, I just skipped down to "Discussion." It's not the adjuvant (in the case of TdaP-aluminum phosphate) it's the tetanus toxoid and other homologous bacteria (when purified and concentrated)that appears to be capable of leading to problems with APS. http://www.jci.org/articles/view/12337/files/pdf Bacterial induction of autoantibodies to β2-glycoprotein-I accounts for the infectious etiology of antiphospholipid syndrome inducing pathogenic anti-β2GPI Ab’s. I want to point out PowP that I have no education what so ever that qualifies me to say exactly what any of this means. I do believe however, that your Dr. should before he advices you on how to proceed with any vaccine. If he's really serious on the vaccine issue, he should be willing to do some research with your particular family history and children in mind. Each vaccine should be looked at very carefully for the particular risk reward scenario with the known state of your kids health/immune function. I believe with my whole heart that PARENTS are the only ones who are going to change what I consider to be an extremly dangerous uneducated attitude with many of these Dr.s and I fear it's going to get worse with the push back from Pharma. Can I ask what the feeling is toward future IVIG for either of your daughters?

Kiera, THANNNK you. I really thought I was losing it as no one was talking about it anywhere that I could find. My mouth sure fell open. He almost said it with a sly little inside twist (or am I a little jaded). Then Dr. Drew fell all over himself pointing out how great these Dr.s had been in trying to help these families!

Did anyone watch the show on reg tv? The video clip doesn't show the Dr. that was on with Dr. T (the one with the bow tie). He said something about PANDAS being back on the table or something like that?? I looked at my husband and asked if I had heard that right? He thought that he had heard what I did.

Thanks for the reply PowPow, Does your daughter have any of the little blood dots (petachias) during flare up, or any other time that you've noticed? How about livedo reticularis? The thread on the Lyme forum might be helpful, Pixeysmom posted a picture. Has she ever seemed to have any hearing problems? I think one of the papers said that many "normal" people have these antibodies that resolve and one said that the ones created during infection didn't progress to clotting abnormalities (i think) except in full blown APL crisis. Something that raised a really big red flag was the statement in the first paper about experimental studies showing mimicry btwn 2GPI-related synthetic peptides and TETANUS toxoid? Ok, so the CDC says discuss concerns with your Dr. Can you see a conversation with your ped where you ask if there is a history of APL syndrome in the family if a it's a good idea to get your child immunized with the 3rd 4th 5th or NOW SIXTH dose of some combo of DTP (don't know how old your child is) TdaP etc. You could tell him/her that you do understand that the tetanus toxin is detoxed with formaldehyde, thereby rendering it a less potent toxoid, but when they get to absorbing that toxioid on an aluminum adjuvent and injecting it, well, it just makes you a little nervous since you've read that this is one of the ways that they create this autoantibody experimentally. BTW, how does that aluminum work anyway? I wonder if any of the Dr.s would have an answer to that question? Would they give you a waiver, have a satisfactory explaination, or just go back to the risk is so much smaller than the reward answer? I had one Ped storm right out of the exam room when I brought up aluminum and thimerosal. She said that she didn't believe any of the stuff I was talking about was in vaccines and that the Dr. who started those rumors had apologized . She would not get an insert and said we would just have to agree to disagree.

posted on lyme forum (there may be something vaccine related here so I'm just going to leave it here too I'm wondering if anyone can help me sort this out? I'm thinking this paper might need a 2nd look even if you just read the intro http://rheumatology..../7/833.full.pdf Overlapping humoral autoimmunity links rheumatic fever and the antiphospholipid syndrome then this http://www.mayoclini...ECTION=symptoms Excerpts: less common symptoms Neurological symptoms. Chronic headaches, including migraines, dementia and seizures are possible when a blood clot blocks blood flow to parts of your brain. Rash. Some people develop a red rash with a lacy, net-like pattern (livedo reticularis) on their wrists and knees. Bleeding. Some people experience a decrease in platelets, blood cells necessary for normal clotting. If you have this condition (thrombocytopenia), you may have few or no symptoms. However, if your platelet count drops too low, you may have episodes of bleeding, particularly from your nose and gums. You can also bleed into your skin, which will appear as patches of small, red spots (petechiae). Infrequent signs and symptoms include: Movement disorder, in which your body and limbs jerk uncontrollably (chorea) Cognitive problems, such as poor memory Sudden hearing loss Mental health problems, such as depression or psychosis and http://ard.bmj.com/c...t/62/5/388.full Parvovirus B19 Loizou et al measured a variety of aPL in the sera of 12 patients with parvovirus B19 infection.14 The aCL were found to be β2GPI dependent, as in SLE, unlike the antibodies from patients with other viral infections examined (not sure what that means) http://en.wikipedia..../Parvovirus_B19 B19 virus causes a childhood rash called fifth disease or erythema infectiosum which is commonly called slapped cheek syndrome http://www.pedrheumo...nesis-final.pdf excerpts and http://www.pedrheumo...nesis-final.pdf

I'm wondering if anyone can help me sort this out? I'm thinking this paper might need a 2nd look even if you just read the intro http://rheumatology.oxfordjournals.org/content/45/7/833.full.pdf Overlapping humoral autoimmunity links rheumatic fever and the antiphospholipid syndrome then this http://www.mayoclinic.com/health/antiphospholipid-syndrome/DS00921/DSECTION=symptoms Excerpts: less common symptoms Neurological symptoms. Chronic headaches, including migraines, dementia and seizures are possible when a blood clot blocks blood flow to parts of your brain. Rash. Some people develop a red rash with a lacy, net-like pattern (livedo reticularis) on their wrists and knees. Bleeding. Some people experience a decrease in platelets, blood cells necessary for normal clotting. If you have this condition (thrombocytopenia), you may have few or no symptoms. However, if your platelet count drops too low, you may have episodes of bleeding, particularly from your nose and gums. You can also bleed into your skin, which will appear as patches of small, red spots (petechiae). Infrequent signs and symptoms include: Movement disorder, in which your body and limbs jerk uncontrollably (chorea) Cognitive problems, such as poor memory Sudden hearing loss Mental health problems, such as depression or psychosis and http://ard.bmj.com/content/62/5/388.full Parvovirus B19 Loizou et al measured a variety of aPL in the sera of 12 patients with parvovirus B19 infection.14 The aCL were found to be β2GPI dependent, as in SLE, unlike the antibodies from patients with other viral infections examined ( not sure what that means) http://en.wikipedia.org/wiki/Parvovirus_B19 B19 virus causes a childhood rash called fifth disease or erythema infectiosum which is commonly called slapped cheek syndrome and http://www.pedrheumonlinejournal.org/nov-dec/pdf/pathogenesis-final.pdf excerpts and http://www.pedrheumonlinejournal.org/nov-dec/pdf/pathogenesis-final.pdf

Good updates here on what Erin Brockovich might be discussing-autoimmunity plus toxic exposure http://www.flutrackers.com/forum/showthread.php?t=177170&page=3 blake's mom I didn't see your remark before I posted. Was the show about the school being built on a toxic site?