kim

a 24 lb turkey and 10 side dishes along with Fc regions/receptors and sialic acid still swirling in my pea brain, I'm really trying to process this in any spare moment. just a couple of quick thoughts: What's different about the vessels of the CNS that allows the T cells to start sticking? If these aggressive T cells are actually able to creep against the current, it occurs to me that the bbb isn't really as "open" as I had imagined. It's the capabilty of the "possesed" T cell that's really the trouble maker? What would happen if they added a little NAG to these T cells, if it has such "stunning" results against autoimmunity...would they stick, creep and invade? One of the concerns of using NAG was an "open," bbb regarding treatment of MS. Are the phagocytes somehow signaling the T cells, hence their determination? It didn't really sound like there was an abnormal population of phagocytes in the area where the crossing took place? If these questions signal "ignorance," remember I'm not any where near as geeky as Buster and MomMD and I bet my annual income reflects it!

I wanted to leave this here before I lost it. Peglem, is your head done spinning yet? http://ndt.oxfordjournals.org/cgi/content/full/gfl847v1 Sialylated therapeutic IgG: a sweet remedy for inflammatory diseases?

can someone describe "milkmaid" grip? I think it's like if you shake hands there is a sort of sqeeze or contraction that can be felt?

TracyRee, Ya know, I got rid of my antibacterial soaps for the most part. I know the kids don't wash long enough most of the time. I used to use diluted bleach a lot too. I don't do any of that any more. Hot soapy water is really good for most regular old germs. After some reading on the subject, I came to the conclusion that I was probably just contributing to stronger microbes. If you miss one or two of those little devils (germs) they can just get stronger and resistent. If you're going to go after germs that way, you better make sure you get em all! I think changing the hand towels more frequently is really good idea and paper towels which i use in the kitchen all of the time. That's just my opinion, I did find this http://www.aafp.org/afp/20010415/1557.html Group A beta-hemolytic streptococci persist for up to 15 days on unrinsed toothbrushes and removable orthodontic appliances.24 The pathogens are not isolated from rinsed toothbrushes after three days. Instructing patients to rinse toothbrushes and removable orthodontic appliances thoroughly may help to prevent recurrent infections.

mat's mom, Can you say how your Dr. tested for metals? I'm always curious about that. Hair, stool, urine, blood?

Worried Dad, They work for me today too (?). Please keep us updated on anything you find out about this.

guy, Pomagranate is supposed to be a great anti inflamm. I drank a ton of Pom wonderful when I had a very inflammatory infection induced rash.

PoewrofPrayer, Thanks for looking that up. It's just strange how that seems to come up quite often (later onset in previous generation). Here are the dates those vaccines became available. 1963 – Measles vaccine 1967 – Mumps vaccine 1969- Rubella vaccine 1971 – Measles, mumps and rubella vaccines combined to form MMR looks like the recommendation for a 2nd dose of the MMR wasn't made until 1989. Can you imagine getting a shingle vaccine, a TdaP, Hep A, a 2nd dose of measles, a seasonal flu, and an H1N1 all on the same day now, or even in the same month? I would be absolutely scared to death for my own health not to mention the vaccines with mercury and aluminum+ all of those antigens that my boys got. It seems downright bizarre to me now. I don't have a copy of my vax record. I remember getting them though. I know the DTP's had mercury in them. I grew up living next door to my beloved granny. She had two little blue bottles of this stuff that burned like #### fire on cuts and even canker sores. I remember the names on those two little bottles... merthiolate and mercurichome. I had lots of skinned elbows and knee and remember getting that stuff put on my cuts often enough. http://en.wikipedia.org/wiki/Thiomersal Thiomersal (INN) (C9H9HgNaO2S), or sodium ethylmercurithiosalicylate, commonly known in the United States as thimerosal, is an organomercury compound (approximately 49% mercury by weight) used as an antiseptic and antifungal agent. It was invented and patented by Morris Kharasch. The pharmaceutical corporation Eli Lilly and Company gave it the trade name Merthiolate and it has been used as a preservative in vaccines, immunoglobulin preparations, skin test antigens, antivenins, ophthalmic and nasal products, and tattoo inks. The compound is being phased out from routine childhood vaccines in the United States, the European Union, and a few other countries.[1] http://en.wikipedia.org/wiki/Merbromin Merbromin (marketed as Mercurochrome, Merbromine, Sodium mercurescein, Asceptichrome, Supercrome, Brocasept and Cinfacromin) is a topical antiseptic used for minor cuts and scrapes. Merbromin is an organomercuric disodium salt compound and a fluorescein. It is readily available in most countries but no longer sold in the United States because of its mercury content. I have always reacted to metals too. Could never even wear eye shadow with sparkles. How'd I get off on all of this???

erica, You might try posting on the TS board or reading thru some of Caryn's threads there. I think she still keeps an eye on that forum. She has a celiac positive son. Here is a link to one of her threads. http://www.latitudes.org/forums/index.php?...'s&st=0

worrieddad, I couldn't get either of the links to open. Is this along the lines of Dr. is proposing? http://docs.google.com/viewer?a=v&q=ca...7sNDj7NycpaCkAg

expanded info from abstract above excerpt http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2409116/ The complex, bi-antennary N-linked glycan found at Asn 297 of the IgG Fc consists of a heptasaccharide which can be variably modified by the addition of fucose or GlcNAc to the Man3GlcNAc2 core, and galactose and sialic acid to the outer arms (Figure 1A)(1). The fully processed N-linked glycan is present on 2–4% of the total IgG in IVIG(2). The anti-inflammatory activity of IVIG has been demonstrated in a variety of animal models of autoimmunity, including autoantibody induced thrombocytopenia(3), serum transfer arthritis(4) and nephrotoxic nephritis(5) and is a property of the Fc fragment and its associated glycan(2, 3, 6). Removal of the terminal sialic acid of IVIG or its papain-derived Fc fragment abrogates the anti-inflammatory activity in these animal models. Conversely, enrichment of the sialylated fraction of IVIG enhances this activity(2). Fc=Fragment crystallizable http://en.wikipedia.org/wiki/Fc_fragment The fragment crystallizable region (Fc region) is the tail region of an antibody that interacts with cell surface receptors called Fc receptors and some proteins of the complement system. This property allows antibodies to activate the immune system. In IgG, IgA and IgD antibody isotypes, the Fc region is composed of two identical protein fragments, derived from the second and third constant domains of the antibody's two heavy chains; IgM and IgE Fc regions contain three heavy chain constant domains (CH domains 2-4) in each polypeptide chain.[1]

This is from Buster's recent "update" thread on PANDAS....the plot thickens http://www.sciencemag.org/cgi/content/abstract/320/5874/373 2008 Recapitulation of IVIG Anti-Inflammatory Activity with a Recombinant IgG Fc Robert M. Anthony,1 Falk Nimmerjahn,1,4 David J. Ashline,2 Vernon N. Reinhold,2 James C. Paulson,3 Jeffrey V. Ravetch1*

I know this isn't really what the conversation is about, but wondered if anyone had seen this. http://www.vaclib.org/basic/tenpenny/prevnar-price.html

Peglem, Believe me, if you are wrong I won't know it. I don't understand it either. I was surprized to see you mention NAC. I forgot that was even in the article, but that's probably what lead me to this particular study in the first place. Back when we were discussing Guillain-Barré, I read an abstract that said that normally ganglioside was resistant to the antibody that they suspected caused the cross reaction. Then, it said that they bypassed immunolgical tolerance by creating a knock out mouse. What they blocked was 1,4-N-acetylgalactosaminyl transferase. When they did that, high antibody was then formed to the bacteria that they were looking at. When I ran into "galactose deficient" again, I went snooping around and found it mentioned again with RA and glomerulonephritis. Ok, in my notes I see where I saved PVL detects galactose-deficient N-linked glycans through their binding to terminal N-acetylglucosamine (Tsuchiya et al., 1993). IgG (or serum diluted 1:1000) So if galactose binds NAC, and galactose is deficient (what makes it deficient in the first place?) then NAC is exposed? Here is another oldere study that refers to RA. http://www.springerlink.com/content/g7757312747704n1/ Received: 6 May 1994 Accepted: 24 May 1994 Abstract It is now well established that rheumatoid arthritis patients have reduced levels of galactose on their immunoglobulin G (IgG) molecules compared with normal individuals.

Peglem, This "galactose deficiency" has got me curious. You see this refered to with rheumatoid arthritis and glomerulonephritis too. I'm wondering if this is more a factor than the levels found? Apparently, galactose deficiency is known to precipitate autoimmunity? http://jdr.sagepub.com/cgi/reprint/84/10/897.pdf Galactose-deficient IgG4 may, in tissues, activate complement, with all the resultant inflammatory consequences. Thus, the anti-inflammatory properties of IgA and IgG4, manifested by their ability to interfere with IgG1-, IgG2-, and IgG3-mediated complement activation, are lost due to their altered glycans (Russell et al., 1989, 1997). In autoimmune diseases, such as rheumatoid arthritis, tissue components and cartilage collagen Type II, in particular, are the autoantigens recognized by galactose-deficient IgG molecules (Rademacher et al., 1994). We have demonstrated, in our earlier studies, that in periodontal disease, collagens Type I and III are recognized by locally produced IgG antibodies (Hirsch et al., 1988). Therefore, in addition to antigens derived from bacteria associated with periodontal disease, tissue autoantigens may also be targets of IgG antibodies that, in turn, activate, in the form of immune complexes, complement cascade with all its inflammatory sequelae and subsequent tissue damage. Glycosylation of immunoglobulins is mediated by a large

OTSmith, Do you think she could be reacting to elastic? It can cause an allergic type reaction with these autoimmune illnesses. Do you see any redness or irritation in areas where elastic would be tight on her skin? Underware line might be most obvious

Cheri, I'm so sorry that you are going through this difficult time. Please know that thoughts and prayers are with you and your family.

Susan, I'm sorry. I should have known that you were perfectly capable of finding those ranges. I ran across an interesting article last night and thought of you. I don't know if theres any of the specific info that your looking for here, but thought others might want to look at this too. The two clickable links at the bottom titled "Specific Diseases In Which Immunodeficiency Is Common and Importance of Zinc To The Immune System," have some good tid bits too. We have never used anything but vitamins and supplements here, and that remains my focus. If something like IVIG were ever to become an necessity, well all of that is something that I like to get some education on too, but much of my interest is in specific targeted supplementation with out doing a bunch of testing except when it's really necessary. Anyway..... I'm leaving an excerpt of who Dr. Shaw is, for those not familiar with Great Plains labs. When reading net info. I like background on who wrote what I'm reading. excerpt http://www.greatplainslaboratory.com/home/eng/founder.asp William Shaw, Ph.D., is board certified in the fields of clinical chemistry and toxicology by the American Board of Clinical Chemistry. Before he founded The Great Plains Laboratory, Inc., Dr. Shaw worked for the Centers for Disease Control and Prevention (CDC), Children’s Mercy Hospital, University of Missouri at Kansas City School of Medicine, and Smith Kline Laboratories. He is the author of Biological Treatments for Autism and PDD, originally published in 1998 and Autism: Beyond the Basics, published in 2009. He is also a frequent speaker at conferences worldwide. http://www.parentsofallergicchildren.org/immune_system.htm The Immune System by Dr. Shaw excerpt http://www.parentsofallergicchildren.org/i...cy_diseases.htm In Gupta's study, 20% of the children with autism had a deficiency of IgA and 8% lacked it completely. Reed Warren and his colleagues also found that 20% of individuals with autism had low serum IgA compared with none of the normal individuals used as controls.

Has anyone tried using any of the links here? http://www.nlm.nih.gov/services/ctresults.html FAQ: Clinical Trial Results Question: How can I find the results of a clinical trial? Information about the ClinicalTrials.gov Results Database is available at http://clinicaltrials.gov/ct2/info/results.

powerofprayer, I just have to ask you something. Having been around these bds for quite some time now, it seems that some of the older people report onset around the age of 10. It has crossed my mind many times that they used to give the 2nd MMR around the age of 10, I believe. Do you happen to have any vaccine record? Just really curious about that. I don't know if they gave any other vaccines at the same time or not. Those old schedules are hard to find on the net

Alright Faith, just because -1,4-N-acetylgalactosaminyl transferase knock-out mice with GD1a ganglioside-mimicking antigens don't rock your world, doesn't mean Cheri wouldn't enjoy discussing it. Sheeesh, I ask you to look at one little ole ensy wensy ganglioside, and just look at how you act. I don't suppose you've even tried to tackle sphingosine yet. chicken liver. I mean, what do you discuss with your friends, if you don't know some of this? Come to think of it, I don't have friends anymore. hummmm, wonder what's up with that? Honestly, the phrase lol, was applicable here when I read your post. My son had to come over and see what was up, because I was cracking up. Samsmom, there is some interesting info in your post. Would luv to hear more about that SIgA. What test, what type Dr. which herbs etc?

I had the hot flashes with my infection induced rash too. In hind site, I had them with respiratory illness a few years ago too. They are awful. Had the fatigue. Could take a 1 1/2 hour nap and still be sleeping by 9:00 p.m. unheard of for me. I had no idea that chronic fatigue type symptoms could go along with what was happening. Also, my oldest son has complained of hot flash symptoms , during the night mostly. Youngest, is more like what some of you are discussing as far as being thin, and not wanting to wear a coat, sleeping with ceiling fan on even when it's very cool etc. Mid 20's internet buddy, who has been on every med in the world for "TS" has talked about these too.

To friends that it may seem I left behind, I didn't!! Cheri, I haven't seen you post much and I know the PANDAS forum is getting most of the action right now (which may actually be giving you a break!) but I want you to know something. So many people are greatful to various Dr.s and reseachers (rightly so!) but I can't help to think of how greatful I am to you. You have kept these forums going with seemingly tireless effort. When the rest of us were off doing our own thing, you were always here, lending your wonderful support and guidance to new parents that are so worried and confused. Look at what an extraordinary group of people that have come together, again, because you never walked away. Didn't matter if there were 100 or 2, you were here. I know, SO many are greatful to you. It seems some really good progress is being made. I was so happy to see this abstract looking at immune system issues in people that don't fit what is currently thought of as the PANDAs profile too (with a little PANDAS comparison). I think there are many things yet to be known about these disorders. Working together, maybe one day there won't quite as many of those new parents and affected children. Cheri, remember my ramblings about genes, chromosomes, impossible pathways? Well, the conversations on the PANDAS forum are making me learn chemisty . Acetylation, hydrogen bonds uhggg. (insert winey voice here). It's just horrible, I tell ya! Since you always liked that stuff, can you pop over and help me out (in other words, i'm still making a horses behind of myself trying to figure this stuff out ). I sure hope you and yours are doing well! http://www.journals.elsevierhealth.com/per...tent/0900729abs Children with Tourette's Syndrome May Suffer IgA Dysgammaglobulinemia: Preliminary Report

Susan, Do you just need the range? These are two that I found. Just search "normal values IgA" you'll get lots of stuff. IgA: 80-350 mg/dl 78-367 This is one http://www.lymphomation.org/tests-immunoglobulins.htm#IgA

Was this one posted already? http://www.journals.elsevierhealth.com/per...tent/0900729abs Children with Tourette's Syndrome May Suffer IgA Dysgammaglobulinemia: Preliminary Report