kim

missjo, I don't have any advice regarding IVIG but so glad to hear your son is recovering. I ran across something and I hope you don't mind me leaving it here in case someone searches "vomiting" and could be helped by it. It doesn't appear to apply to your son, but autoimmune related and mentions brain stem involvement in regards to the vomiting. http://www.ninds.nih.gov/disorders/neuromyelitis_optica/neuromyelitis_optica.htm What is Neuromyelitis Optica ? excerpt

This is some really old reseach on Rheumatic fever Vit C and Vit P. (1945) Seems they talk a lot about sed rate in this paper and thought someone might be interested in reading http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1011572/?page=1

nicklemama, Look at this insert from flumist. Look at 12.3 about 1/3 of the way down the page on the right under the heading Pharmacokinetics Biodistribution http://www.medimmune.com/pdf/products/flumist_pi.pdf 12.3 Pharmacokinetics Biodistribution I would love to see anyone who suspects a problem with flumist ask their Dr. if this rings any alarm bells for them regarding your childs reacton and if they would be willing to sign an exemption for that vax for the child. Was your sons reaction reported?

bws, I have many concerns surrounding the way immunizations could be contributing to aggressive/confused antibodies and I think your question is a good one. My question would be whether or not the Dr. was specifically refering to a flu vaccine? The "egg" thing would probably get you out of the flu vax and maybe yellow fever but that would be about it. If a Dr. would tell you that you shouldn't get a hep B vax if you have a known allery to yeast, I might be impressed since it's warned about in the insert, but most don't seem to read them (#4 CONTRADICTIONS http://us.gsk.com/products/assets/us_engerixb.pdf). You can see from this table that the form of yeast is typically s cerevisiae http://www.cdc.gov/vaccines/pubs/pinkbook/downloads/appendices/B/excipient-table-1.pdf Here is a bit from wiki on Saccharomyces cerevisiae http://en.wikipedia.org/wiki/Saccharomyces_cerevisiae Antibodies against S. cerevisiae are found in 6070% of patients with Crohn's disease and 1015% of patients with ulcerative colitis. Other names for the organism are: S. cerevisiae short form of the scientific name Brewer's yeast, though other species are also used in brewing Ale yeast Top-fermenting yeast Baker's yeast Budding yeast This species is also the main source of nutritional yeast and yeast extract. Might a prudent Dr. ask about a family history of crohn's/colitis BEFORE injecting a day old infant with this or a teen/adult for that matter? It's been a while since I looked at that research or the significance of it, my point is really the lack of knowledge our medical professionals seem to have when it comes to vaccines. This will take you to some Pubmed info if anyone is interested in this topic http://www.google.com/cse?cx=011897857536713548856%3A3rmdzaobefc&ie=UTF-8&q=Saccharomyces++cerevisiae+crohn%27s&sa=Go#gsc.tab=0&gsc.q=Saccharomyces%20cerevisiae%20crohn's&gsc.page=1 You might be better off telling them that you have an allergy to aluminum, monkey kidney tissue, or neomycin depending on what vax you're trying to dodge (that is assuming that the person injecting the stuff knows anything about it...which I have YET to find in our community).

LLM, That's probably because there really isn't one! I guess I just wanted to discuss the more "natural side" of something that might be helpful. I had a lot of respect for the info that was coming out of Yasko's site. There isn't anything that you or Nancy have said that I don't basically agree with, except I am a little perplexed about " the loss of two neighboring methiones." If CamK II is strictly being elevated by an antibody in a PANDAS situation, well maybe I'm way off base, but something that I had read a really long time ago was kind of stuck in my head http://www.alternativementalhealth.com/articles/walshMP.htm One thing that is absolutely certain is that methionine and/or SAMe usually harm low-histamine (overmethylated persons)..... but are wonderful for high-histamine (undermethylated) persons. The reverse in true for histadelic (undermethylated) persons, who thrive on methionine, SAMe, Ca and Mg..... but get much worse if they take folates & B-12 which can increase methyl trapping. I wonder what can be learned from children here who had those high CamK II levels that don't strictly fit the PANDAS criteria that were used for the study? Nancy, If you look at this paper http://intramural.nimh.nih.gov/pdn/pubs/pub-19.pdf There was no elevation in 10 sera from non-PANDAS tics, six sera from non-PANDAS OCD, 10 sera from ADHD, or five age-matched normal control sera when compared to PANDAS I don't know if there is more in the research or not?

opps didn't mean to send that yet

LLM, Sheeesh! I'm IMPRESSED. I can't find my way outta a paper bag without a GPS and I know nothing about cars (the biology was the easiest part for me) so watching you go through those 3 processes was something! Ok, that is an excellent point and exactly what I would have said a year ago, however when looking at what has been published about PANDAS specifically.... From Buster's thread http://www.latitudes.org/forums/index.php?showtopic=5144&st=0&p=36300entry36300 Discovery of new antibodies (24.3.1) In 2003, Kirvan and Swedo published the landmark Nature paper entitled “Mimicry and autoantibody-mediated neuronal cell signaling in Sydenham chorea” which pulled together all the above papers into a finding that there were three distinct antibodies that cross-reacted with Lysogangliosides in the brain. In addition, they found one of these antibodies caused significant CaM Kinase II activation in sera.During this time, Dale , Church and others were making similar observations regarding anti-basal ganglia-antibodies (ABGA). and Clarifying the presentation differences of PANDAS (sudden onset, episodic course) In 2006, Kirvan and Cunningham published their finding that children from the Swedo studies were distinct from Tourettes and traditional OCD/ADHD patients in that the Sydenham Chorea and PANDAS children had elevated CaM Kinase II activation in their sera.In 2007, Kirvan further showed that Tubulin is a target of the anti-neural antibodies in patients with sydenham chorea.

Nancy & LLM, I had to laugh reading a couple of your remarks. Nancy, I love the dummies versions too and I have no background that qualifies me to dabble with this stuff either. The only thing I have done is spent an inordinate amt. of time at this and had the willingness to make a complete fool of myself at times. What I'm wondering about is strictly in relationship to methylation and people/children who specifically tested high CaMKII. It appears to me that some people may just have too much of this or it doesn't shut "off" properly. If that's the case, and it can be reversed by MRSA, is the methionine pathway something that you would want to supplement? Is a high CaMKII level evidence that you have enough around to begin with? The research in relationship to heart rhythm and elevated CaMKII and this excerpt below, which is taken from PD research (I'm not looking at anything applying except the oxidative stress principal here) makes me wonder... http://www.jneurosci.org/content/27/47/12808.full#ref-4 As far as I know, it's not known what the significance of the elevated CaMKII level was from those tested with Dr. Cunningham. The heart research suggests that the good old stress chemicals (fight or flight) can activate it too. I like the idea that a whole food could be helpful IF this is part of the picture, whether you are dealing with a true autoantibody crossing the bbb or part of a differnt scenario.

Jill, I probably confused you by posting about Antiphospholipid but I wonder if these polymorphisms relating to heparan have a connection? Just one, of what seems like a possible connection. http://www.ncbi.nlm.nih.gov/pubmed/3290104?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA Heparin-inhibitable basement membrane-binding protein of Streptococcus pyogenes

Nancy and LLM..thank you so much for your responses. This thread has really taken off! Life sure is full of twists. I sort of transitioned over to the PANDAS board to take a break from the Yasko/methyl stuff. I only skimmed this thread this morning, but want to tell JAG to please investigate the FACTOR V (Leiden) stuff. I DO believe there is a connection there and hope you will share what you find (I have a poorly formed theory on it at this time). This page was helpful when I was looking at that several years ago. http://www.med.illinois.edu/hematology/PtHomocysteinemia.htm these are just a couple of random things that I had saved http://rheumatology.oxfordjournals.org/content/45/7/833.full.pdf Overlapping humoral autoimmunity links rheumatic fever and the antiphospholipid syndrome http://journals.lww.com/md-journal/pages/articleviewer.aspx?year=1997&issue=05000&article=00006&type=abstract Chorea in the Antiphospholipid Syndrome: Clinical, Radiologic, and Immunologic Characteristics of 50 Patients from Our Clinics and the Recent Literature trg girl, "I" have used garlic capsules but can't say what they would do for symptoms that most here are dealing with here.

Nancy&LLM, Since you are looking at this issue, I wonder if you would both take a look at this thread http://www.latitudes.org/forums/index.php?showtopic=5082&st=0&p=35657&hl="cam%20kinaseii"%20&fromsearch=1entry35657 From the paper Nancy posted When so many were getting high CamK II results, I became interested in "methionine sulfoxide reductase," and the connection to it's ability to return CamK to lower levels. Look at the info on that thread regarding "MsrA" Would really like to see if either of you find the info there as intriguing as I did and wondering how you feel about supplementing in relationship to it.

Tamistwins, is this the right person? Professor Department of Microbiology http://www.med.umn.edu/microbiology/faculty/cleary/home.html http://www.ncbi.nlm.nih.gov/pubmed/20231435 Induction of TGF-beta1 and TGF-beta1-dependent predominant Th17 differentiation by group A streptococcal infection. Wang B, Dileepan T, Briscoe S, Hyland KA, Kang J, Khoruts A, Cleary PP. not the same team but assuming research along the same lines http://www.ncbi.nlm.nih.gov/pubmed/19940258 Cellular mechanisms of IL-17-induced blood-brain barrier disruption.

SarahJane, Have you had that drink yet? If not, you may want to before I lay this on you In my opinion, for the vet to vaccinate an animal that has an active infection, right before undergoing surgery, place on antibiotics (beneficial flora in a dog will be killed off just like a human) and revaccinate is almost criminal. Please educate yourself regarding your pets vaccines, as you would a child. If there is an adverse reaction, your pet will suffer and you're on the hook for the $$$ to try to fix it. If you decide to go ahead, ask the vet to at least use a little common sense, like waiting until the pet is not stressed from surgery, is not battling an infection and is not on antibiotics. I had this argument with a vet once and you know her response? "You're right." I almost fell on the floor. I have often wondered if she changed the way she did anything. I doubt it, but the more of us who point out the obvious, the better our chances. This is an article that I pulled up quickly that does mention the vaccines that your dog was given http://www.caberfeidh.com/Revax.htm

Thanks for posting Cheri! I put it under the tryptophan thread on the PANDAS forum too

In light of recent discussion here http://www.latitudes.org/forums/index.php?showtopic=11225 I would luv to know what those of you who are actively tracking and supplementing are seeing in the way of tics or other behaviors?

5HTP made my son sleepy, husband said he felt wired from it. He was trying to adjust to a different shift at work, and I gave it to him to help him sleep. Backfired big time with him. I know some cites suggest the tryptophan converts to 5HTP, so giving tryptophan won't force it on the body. Only what is needed will be converted (so the theory). I found what you said, EAmom, 5HTP easier to find tho. Cheri just posted this on the TS side today. Sheeez, try to figure this stuff out (for about the 100th time!) Interesting how insulin or sugar levels might effect things in conjunction with tryptophan tho. http://www.latitudes.org/forums/index.php?showtopic=11369 Animal Study Suggests Diet Linked to Mental Illness also mentions Tourette Syndrome http://psychcentral....ness/21786.html

Couldn't leave well enough alone here, as I got thinking about the possibility of low levels of D either being caused by chronic infection or low levels contributing to a hyper immune response. As so often happens, I wondered about levels in newborns and what the effect of the highly touted vaccine schedule might be in relationship immunity/autoimmunity. so i googled.... "Vitamin D levels in newborn" hummm, appears vit D levels are very low in a newborn (the same babies who are given a birth dose of Hep B and another whole slew at 2 mos). Not at all sure that I agree with the author's conclusion here but.... from this article http://www.drsoram.com/give-your-newborn-vitamin-d-400iu/ the study http://www.hindawi.com/journals/ije/2010/235035.html

It was interesting how the boys Dr. jumped on the supplemental vit D when low levels were found. He was all for supplementing and commented on how many that he was testing were deficient. This is a totally mainstream med. Dr. Well, we do have long winters in our neck of the woods, so maybe this is reasonable however, I can't totally discount Marshall's rationale on Vit D supplementation either. Maybe there is room for helpful or harmful effects depending on what's at the heart of the problem in a certain individual. I think you might like to take a look at this page. It presents the "other side," of D, in a way that I could understand (much of it anyway). http://mpkb.org/home/publications/marshall_autoimmunity_2010 JensOS, My understanding is that vit D3 will help the calcium go where it belongs, as in the bones and teeth instead of floating around in the bloodstream, where it can deposit in arteries and other places that it doesn't belong. Maybe it is increasing cellular influx, which could contribute to tics? I have used higher mag. supplementation than calcium in the past.

Bonnie, have you thought of changing your screen name to "I love quiet dogs?" Our experience with melatonin has been about what you're describing. If too much is taken, the AM grogginess is a problem.

tpotter, Thank you for your response. It's always good to know that the adverse effects on my blood pressure and CNS when I go near this topic are heard and considered even by one person. It's not important that anyone agrees with all of my concerns, only that they investigate for themselves. I hope that the suspected adverse events in those that you know were reported. I'm not not picking on your husband here by any means, but I'd luv you to ask him if the recent news that the vaccines for the rotavirus were contaminated with DNA from known pig viruses, was concerning to him. When it was discovered in the first, they recommended suspension of use and said to use another manufacturers vaccine. When it was discovered in that one too, along with particles from a 2nd virus , they said "oh well, use either one," it's probably not dangerous anyway. Would he still want his infant vaccinated with either of these vaccines when, in the vast majority of severe cases, infection only requires an IV for rehydration? There are many many issues surrounding the use of vaccines other than the "it" controversy. http://articles.cnn.com/2010-03-22/health/rotavirus.vaccine_1_rotavirus-vaccine-rotarix-glaxosmithkline?_s=PM:HEALTH Rotarix rotavirus vaccine contaminated, officials say http://blogs.wsj.com/health/2010/05/06/now-theres-pig-virus-dna-in-mercks-rotavirus-vaccine-too/ Now There’s Pig Virus DNA in Merck’s Rotavirus Vaccine, Too.

Trg Girl, I think pyruvate levels can be checked with a blood test, the auto reactive part looks like it would have to be checked with neuronal tissue, much as Cunningham is doing. GraceUP, In addition to the info already provided by others, if you google mito cocktail or mito support you can get a lot of info on supplements. What is so upsetting about the UC Davis study is the fact that the Poling case is not new. I remember watching the comments on Fox from the attorney's, the day this judgement was awarded. It was pathetic/guarded. I wondered (along with thousands of other parents) how long it would take and how many other children would be damaged/suffer until someone said hey...maybe we better take a real look at this. Now we have a small but significant study. Has anyone heard this anywhere but here (I rarely turn the TV on anymore)? I wondered if Hannah's parents wouldn't have been who they were, if this would have ever made it as far as it did. I wondered why this didn't gain momentum even amongst health care workers. If you were a Ped, BY NOW WOULDN'T YOU BE WANTING SOME ANSWERS before you kept shooting infants up with multiple vaccines and having the insurance companies breathing down your neck, if you don't keep your "fully immunized," levels up. Look at this statement and then tell me who we are supposed to rely on, to use common sense and look out for our kids. underlining mine http://www.cbsnews.com/8301-31727_162-20015982-10391695.html This isn't going to happen by itself. Gerberding makes her statement and what? Did the government immediately start a follow up study to see if it really was an isolated "specific situation." It's up to everyone of us to be informed, ask the tough questions and expect informed answers from our Dr.s. It's up to us to share info with friends and family. WE have the responsibility as a nation to not let our children fall victim to big business (or have some hard science to base a decision regarding whether or not a particular vaccine IS in the best interest of our child). Sometimes a rant just has to be unleashed for PatAnne's child and every other out there where this finding may prove significant.

I was looking at anti inflamms this morning. Trying to find a luteolin supplement (can only stomach so much celery) and ran across this. Just more info on the IL-6 auto inflammatory process. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2014821/?tool=pmcentrez Interleukin-6 (IL-6) is a pleiotropic cytokine with a wide range of biological activities that plays an important role in immune regulation and inflammation. Among other actions, it induces terminal differentiation of B lymphocytes into antibody-forming cells and the differentiation of T cells into effector cells. IL-6 also has multiple potent proinflammatory effects. An association between IL-6 and lupus was demonstrated in murine models of SLE and blocking IL-6 improved lupus in all models tested. Data from several studies suggest that IL-6 plays a critical role in the B cell hyperactivity and immunopathology of human SLE, and may have a direct role in mediating tissue damage. Based on these data, we propose that blocking the effect of IL-6 in humans may improve lupus by interacting with the auto inflammatory process both systemically and locally.

http://www.eurekalert.org/pub_releases/2010-11/uoc--uds112410.php Public release date: 30-Nov-2010 UC Davis study finds children with autism have mitochondrial dysfunction http://www.ageofautism.com/2010/09/government-awards-hannah-poling-15-million-in-vaccine-injury-case.html?cid=6a00d8357f3f2969e20134872f7a19970c September 09, 2010 Government Awards Hannah Poling $1.5 Million in Vaccine Injury Case So maybe Hannah's case wasn't as RARE RARE RARE as the story was spun? For anyone who is of the opinion that the pressure placed on parents to vaccinate fully, on schedule, is a dangerous propostition for some children, please share this with your health care professionals. I found the mention of high levels of pyruvate in the first article interesting. I think we have had at least one parent report a high pyruvate level found in their child. Also, pyruvate kinase has been suspected as an auto antigen in TS/OCD and related disorders. I didn't know the function of pyruvate in the body, so the mention caught my attention. The UC article talks of an inability to process it fast enough, the TS study identifies it as an auto antigen, so not spreaking of the same problem, wouldn' think. Identification of Pyruvate Kinase as an Antigen Associated with Tourette Syndrome http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1853370/

These are a couple of articles that I hope parents will take the time to read and ask their physicians about. Maybe help critical family members (too) to realize that there are many issues involved in vaccination, and it's not just paranoid parents looking for a scape goat for the woes of the world. If you search the word "vaccinations" you can find many many threads with useful info Below is part of a post from a recent thread on the PANDAS forum, found here. http://www.latitudes.org/forums/index.php?showtopic=10476&st=0 http://www.globalres...xt=va&aid=14868 Children Who Get the Flu Vaccine Have Three Times Risk Of Hospitalization For Flu, Study Suggests http://www.rice.edu/...lyport/flu.html Will a Flu Shot This Year Make You More Susceptible Next Year?

These are a couple of articles that I hope parents will take the time to read and ask their physicians about. Maybe help critical family members (too) to realize that there are many issues involved in vaccination, and it's not just paranoid parents looking for a scape goat for the woes of the world. These are a couple of things that parents struggling with this decision might want to take into account too. The 2nd article about the flu shot making you more susceptible next year, raises an important question in my mind. If the antibodies can create confusion for "next year," (he is assuming that they are guessing right, as to which strains are circulating each year) how about in the same season? Can vaccine induced antibodies make it less likely that your body will use the right antibodies to fight off other strains or "flu like illness?" If you search the word "vaccinations" you can find many many threads with useful info Below is part of a post from a recent thread on the PANDAS forum, found here. http://www.latitudes.org/forums/index.php?showtopic=10476&st=0 I'm wondering if anyone has heard about this 1st study from their physician? http://www.globalres...xt=va&aid=14868 Children Who Get the Flu Vaccine Have Three Times Risk Of Hospitalization For Flu, Study Suggests http://www.rice.edu/...lyport/flu.html Will a Flu Shot This Year Make You More Susceptible Next Year?