kim

I had a conversation with another mom several months ago. I was getting some flack about how much time I spent on the computer. I told her that she just didn't understand what it was like to have a child (children) where you were constantly worried about their health. She replied, "yes I do. I used to pray beside my daughter's bed after she went to sleep, her anxiety was awful for me too." I know this child had repeated strep (tonsils out around 5 or 6) slept in her sisters room, because she could not sleep alone in her room for anything, vomited before school until 3rd grade, bedwetter. No tics, ocd, or adhd tho. Very compliant, although suffered greatly when her parents went out for an evening. I would say ANXIETY was a constant companion in early years. It really didn't occur to me until my mom made that statement, that I too was probably somewhat of a PANDAS child. I was never really able to shake the "abrupt onset," idea until very recently. BTW faith, well said!

well, I learned something this morning. White spots on fingernails are commonly assoc. with low zinc. That has appeared to be the case in my youngest son but this abstract has me thinking.... Also, I think I remember horsetail being a supplement that was used by some for strep clearance on the Yasko forum. Chitosan (glucosamine), horsetail and sulfur, very interesting! These are some pretty extreme picture Leukonychia Photos http://www.dermnet.com/Leukonychia New abstract PubM bolding mine http://www.ncbi.nlm.nih.gov/pubmed/1947004...mp;ordinalpos=1 Improvement of psoriatic onychodystrophy by a water-soluble nail lacquer and http://en.wikipedia.org/wiki/Chitosan chitosan=linear polysaccharide composed of randomly distributed β-(1-4)-linked D-glucosamine (deacetylated unit) and N-acetyl-D-glucosamine (acetylated unit).

Angela, I'm so glad you brought that up. I hope that parents don't dismiss those itching symptoms as a tic or compulsion. Personally, I think those antibodies are perfectly capable of reacting with bacteria or possibly some strains of yeast, in those area's south of the belly button. I can tell you from personal experience they are capable of reacting with a yeast strain present on the scalp!

an immune complex is present!? boy I hate this part of the paragraph

http://www.enotes.com/microbiology-encyclo...ne-complex-test

Yes Faith, that is it. Did the link that I posted earlier work before? I thought I checked them and it did?

Well, she said in that clip on that site, that it would be the site used for future updates AS SEVERAL OF HER OTHER ACCOUNTS HAD BEEN HACKED INTO. Wonder if someone was able to block this one too. I'll look around and see if I can find another link.

Lauren'smom, Just take a deep breath and take care of your family. I suspect most of us will still be here when you have more time. I almost hate to say this, because it seems to be different for each child, but many times it seems these tics can run in 6 to 8 week cycles. We have found that to be true in our house. I'll be praying that Lauren has a remission soon. Make sure Lauren is well hydrated for the blood draw (unless she has to limit fluids for the other testing) it makes it easier.

very upsetting video. What was really awful, various medical professionals were saying that this was all in her head. Other's have said that it was all an act. The Utube video http://www.youtube.com/watch?v=ja7lCIp04YY Schroll down and play video. Then be sure to listen to the interview with Dr. Buttar, located right above the video http://blogs.healthfreedomalliance.org/blo...ad-to-recovery/

laurenjohnsonsmom, Wanted to leave you a some info on those two vaccines. I have included links to the package inserts. Not sure if the one I'm leaving here is the one she got (Tdap), but alum adjuvants are in the majority, if not all of the combo's of that vaccine. If you scroll down to the fifth post in the first link, you will see a post by a woman with an EXTENSIVE background in vaccine research. Alum and thimerosal/mercury (still contained in the seasonal flu shot in most cases) are something that I'm very leary of injecting into my neurologically sensitive kids. After doing a lot of research myself, I was left feeling very betrayed regarding the safety and effectiveness of the whole program. I read a waiver that I had signed, regarding the birth dose of Hep B for my younger son from his birth records that I had retrieved form storage. I literally had tears of anger running right down my face. It was a "hold harmless," letter for the hospital and anyone connected with any adverse events that my son may experience from that vaccine. WAS I NUTS? That letter was not complicated, it was straightforward. My trust was so complete that I wouldn't be asked to give my child anything that didn't have a proven track record of safety, and a clear benefit to his health, I didn't even READ the thing. I just glanced at it and signed. I will never quite forgive myself for that. I didn't know what Hep B was, how you caught it, how you treated it if you did contract it, how long any protective immunity was thought to last, or consider long term risks to his health. Ditto for the other vaccines. I just did what they told me, and thought I was protecting my babies/children. That luxury/misconception is forever gone, now. As far as a SIXTH Tdap, how well can a vaccine work, that requires SIX between the age of approx 2 months and approx. 11 years of age? Well, here are the links anyway. Didn't mean to get carried away on the subject, but it is something that you will probably want to become knowledgeable about. I'm wondering if Lauren completed the HPV series? If not, PLEASE do some research on that vaccine before you continue! Here are some things that you might find helpful Momtezuma....alum info fifth post down http://www.mothering.com/discussions/showthread.php?t=392079 http://www.merck.com/product/usa/pi_circul...gardasil_pi.pdf Each 0.5-mL dose of the vaccine contains approximately 225 mcg of aluminum (as Amorphous Aluminum Hydroxyphosphate Sulfate adjuvant) Tdap http://docs.google.com/gview?a=v&q=cac...WbD67YUdNvEyIng 1.5 mgs aluminum (.33 mgs aluminum) Preventing Gardasil Vaccine Injuries & Deaths http://www.nvic.org/NVIC-Vaccine-News/July...ies-Deaths.aspx ***I included this one because the first time I read it in a vax insert, I was astounded. Tetanus-560 cases reported in 1947....prior to routine use of the vaccine???? I thought tetanus infected thousands and the vaccine was essential. Now, I wonder how in the world my infant was supposed to contract tetanus? WHY are we jamming our infants with an immature immune systems full of these vaccines, and what part is it playing in autoimmunity along with genetic susceptability and other environmental toxins? The risk/reward ratio just seems severely out of balance. excerpt http://74.125.95.132/search?q=cache%3AfUIn...hl=en&gl=us Following routine use of tetanus toxoid in the US, the occurrence of tetanus disease decreased dramatically from 560 reported cases in 1947, to an average of 50-100 cases reported annually from the mid 1970s through the late 1990s, to 35 cases in 2000.

L mo (hope you don't mind me shortening your name) First a big warm welcome! That is just heart breaking and I hope you and your brave daughter did something to change that. I suspect you did. I wondered what the "40" known cases referred to in the segment, was about. Psychosomatic or intractable psychogenic sneezing? Wow, it's just so wrong that that was even suggested at this point!

Michelle, have you been following the Desiree Jennings story by any chance? I watched someone on Fox say that a well known med est. was using her case to study hysterical reactions in people who believed vaccines had damaged them too. It was so maddening, I just wanted to cry. This girl just went to get a flu shot as part of a wellness program. She wasn't afraid, forced for work purposes, nothing. It just happened, but the spin to discredit any link is incredible. I try not to waste my time worrying about that stuff. I find that the attitude of "now" as opposed to 10 years or so ago, is very different. Younger Dr. and PA are both interested and supportive of anything that I discuss with them in regards to my sons health. Much different than the condescending, pitiful, feigned patience and outright disrespect experienced by Dr.s back then. Here are a couple of links if anyone is interested in this story. The Utube video http://www.youtube.com/watch?v=ja7lCIp04YY Schroll down and play video. Then be sure to listen to the interview with Dr. Buttar, located right above the video http://blogs.healthfreedomalliance.org/blo...ad-to-recovery/

Thanks EAMom. I knew Buster had a thread summerizing findings but I couldn't find it. Located it under the stickies this morning, but thanks for you excerpt anyway! Here is a link to the thread that I was looking for, if anyone else wants to review http://www.latitudes.org/forums/index.php?...amp;#entry36300 Meg's mom, good idea. It seems quite ironic that we couldn't get "not positive" strep cultures for such a long stretch when the boys were younger. I was/am still struggling with the "abrupt onset," criteria. The saving sammy presentation is NOT what we experienced. The "sneezing" little girl, looks a lot closer, if you substitute her tic with head shaking, or other tics. It seems obvious that there are different degrees or maybe totally different things going on here, but overlap too. At any rate, it's good to see research moving forward

Buster, When I read this excerpt, i have to wonder how many kids in these "disproving studies," are not showing any sign of strep, but autoimmune problems triggered by another illness. Was Kurlan's study strep exclusive, or was he saying that there wasn't anything to indicate that there was immune system activity that would suggest viral or other types of illness? http://docs.google.com/gview?a=v&q=cac...Ccyg9fDXQih2SSw Epitope Spreading As an autoimmune disease progresses from initial activation to a chronic state there is often an increasein the number of auto antigens targeted by T cells and antibodies (“epitope spreading”)89,90 and, in some cases, a change in participating cells, cytokines, and other inflammatory mediators. Both autoreactiveT cells and B cells contribute to epitope spreading. Activated autoreactive B cells function as antigen-presenting cells; they present novel (cryptic) peptides of autoantigens 91,92 and express costimulatory molecules. They also generate peptides that have not previously been presented to T cells; thus, T cells willnot have become tolerant to such cryptic peptides. Over time, multiple novel peptides within a molecule can activate T cells. Furthermore, if the B cell binds and takes in not a single protein but a complex of multiple proteins, epitopes from each protein in the complex will be processed and presented to naive T cells. The cascade continues, with T cells activating additional autore-active B cells and B cells presenting additional self epitopes, until there is autoreactivity to numerous autoantigens. By then, the identity of the initial antigan can no longer be determined. Michelle, I can't help but wonder how much this study has to do with the attitude in Ohio. http://www.journals.uchicago.edu/doi/abs/10.1086/592972 Clinical Infectious Diseases 2008;47:1388–1395 MAJOR ARTICLE Emergence of Streptococcus pneumoniae Serotypes 19A, 6C, and 22F and Serogroup 15 in Cleveland, Ohio, in Relation to Introduction of the Protein‐Conjugated Pneumococcal Vaccine Conclusions. This study documents decreases in the incidence of infections involving vaccine serotypes, increases in infections involving other serotypes, and decreases in the activity of macrolides and clindamycin after conjugate vaccine introduction.

Susan, Whew! Glad you said "white filling." Personally, I won't even walk in the door of a dentist's office that is using amalgam (mercury) anymore. No, I don't know anything horrible about composite fillings I'm glad that your daughters B12 has been checked. There was another thread about nitrous oxide here, not too long ago. You can look at the site in the first post to see how B12 and folate play into a cycle that can cause some problems if not functioning properly and see how the cysteine/homocysteine/methionine pathways interact. http://www.latitudes.org/forums/index.php?...st=0#entry42531 There are quite a few pub med abstracts regarding low B12 and nitrous oxide use. Most talk about problems with longer term use than what your daughter probably would have been exposed to tho. I guess I would just do some reading, let your DAN know if you suspect the nitrous was a problem, and get his/her opinion. When you look at this info. and consider that NAC has been shown to help some people with OCD, it just seems resonable to learn a little about this. A few things from P med http://www.ncbi.nlm.nih.gov/pubmed/8250714...ogdbfrom=pubmed Vitamin B12 (cyanocobalamin) is an integral component of two biochemical reactions in man: the conversion of L-methylmalonyl coenzyme A into succinyl coenzyme A and the formation of methionine by methylation of homocysteine. http://www.ncbi.nlm.nih.gov/pubmed/1845855...ogdbfrom=pubmed Nitrous oxide in pediatric anesthesia: friend or foe? http://www.ncbi.nlm.nih.gov/pubmed/1768339...ogdbfrom=pubmed When nitrous oxide is no laughing matter: nitrous oxide and pediatric anesthesia. Neurologic degeneration associated with nitrous oxide anesthesia in patients with vitamin B12 deficiency. Patients with vitamin B12 deficiency are exceedingly sensitive to neurologic deterioration following nitrous oxide anesthesia. If unrecognized, the neurologic deterioration becomes irreversible and may result in death. http://www.ncbi.nlm.nih.gov/pubmed/1762385...ogdbfrom=pubmed Reversible nitrous oxide-induced myeloneuropathy with pernicious anemia: case report and literature review. Muscle Nerve. 2008 Jan;37(1):125-9. Reversible nitrous oxide-induced myeloneuropathy with pernicious anemia: case report and literature review. Singer MA, Lazaridis C, Nations SP, Wolfe GI. Department of Neurology, University of Texas Southwestern Medical Center, 5323 Harry Hines Boulevard, Dallas, Texas 75390-8897, USA. mike.singer@utsouthwestern.edu A previously healthy 27-year-old woman developed a subacute myeloneuropathy after receiving nitrous oxide anesthesia for dental procedures. Neurologic evaluation revealed that she was vitamin B(12) deficient due to underlying pernicious anemia. Discontinuation of nitrous oxide and supplementation with vitamin B(12) resulted in dramatic clinical improvement, with near-complete normalization of her neurologic examination. This case and published reports reviewed here emphasize that favorable outcomes are possible following prompt recognition and treatment of vitamin B(12) deficiency. http://www.ncbi.nlm.nih.gov/pubmed/1916962...ogdbfrom=pubmed Neurol Sci. 2009 Feb;30(1):75-6. Epub 2009 Jan 24. Subacute combined degeneration of the spinal cord caused by nitrous oxide anaesthesia. Renard D, Dutray A, Remy A, Castelnovo G, Labauge P. Department of Neurology, CHU Nîmes, Hôpital Caremeau, Place du Pr Debré, 30029 Nîmes Cedex 4, France. dimitrirenard@hotmail.com Vitamin B12 deficiency causes haematological, gastrointestinal and neurological diseases. Subacute combined degeneration (SCD) of the spinal cord is characterised by degeneration of the posterior and lateral columns. We report a case of SCD associated with nitrous oxide anaesthesia.

Susan, Wondering if your daughter is doing ok now? Have you ever had her folate or B12 levels checked? Also, wondering if NAC (n acetyl cysteine) would be an option if nitrous oxide caused things to get worse (OCD type behaviors)? Do you have any type of alternative dr. or DAN? Also, I'm really wondering, what did the dentist fill the cavity with? Sorry for all of the questions late in the thread!

Vicky, I was trying to figure out the hows and whys last night. I got as far as NK -B and IL8. I think the blurry vision is a inflammation problem within the eye, not coming from the brain. The benfotiamine study said "The increased phosphorylation of PKC and activation of NF-B in the ciliary body as well as in the retinal wall of EIU- rat eyes was suppressed by benfotiamine. Conclusion: These results suggest that benfotiamine suppresses oxidative stress-induced NF-B dependent inflammatory signaling leading to uveitis, http://cat.inist.fr/?aModele=afficheN&cpsidt=17902942 To study epithelial inflammatory responses initiated by Streptococcus pyogenes infection, we investigated chemotaxis ability in the supernatant of infected human respiratory epithelial HEp-2 cells. Our results showed that these supematants showed significantly increased ability to attract monocytes, implying the release of inflammatory chemoattractants into the medium. Expression of interleukin (IL)-8 and IL-6 in HEp-2 cells was significantly increased at both the mRNA and protein levels after infection with S. pyogenes. Electrophoretic mobility shift and reporter-gene assays demonstrated that the transcription factors NF-KB and AP-1, regulated by mitogen-activated protein (MAP) kinase, were activated after streptococcal infection. The increases in mRNAs for IL-8 and IL-6 were abrogated by addition of NF-KB and MAP kinase inhibitors, suggesting that the upregulation of IL-8 and IL-6 is mediated through NF-KB and MAP kinase signaling pathways. Taken together, our results indicate that S. pyogenes infection of epithelial cells induces the secretion of pro-inflammatory chemokines/ cytokines through activation of NF-KB and MAP kinase signaling pathways http://nejm.highwire.org/cgi/content/extract/336/15/1066 Nuclear Factor-B — A Pivotal Transcription Factor in Chronic Inflammatory Diseases In chronic inflammatory diseases, such as asthma, rheumatoid arthritis, inflammatory bowel disease, and psoriasis, several cytokines recruit activated immune and inflammatory cells to the site of lesions, thereby amplifying and perpetuating the inflammatory state.1 These activated cells produce many other mediators of inflammation. What causes these diseases is still a mystery, but the disease process results from an interplay of genetic and environmental factors. Genes, such as those for atopy in asthma and for HLA antigens in rheumatoid arthritis and inflammatory bowel disease, may determine a patient's susceptibility to the disease and the disease's severity, but environmental factors, often unknown NF-B The Role of NF-B in Inflammatory Diseases Effects of Glucocorticoids on NF-B

I think I posted something regarding the use of Benfotiamine for uveitis on another thread. I wanted to follow up on why this supplement might help with blurring vision (for my own files of supplements to use or have on hand). I ended up looking at wiki for general info on thiamine. I wanted to leave some of what I found here. Seems I remember some discussion of what could be "thiamine related deficiency," included in some of the eye/vision problem threads. This starts with the study that I found regarding Benfotiamine use for uveitis and has a site which sells it (Source Naturals) near the end. These are just excerpts that I saved in my "notes." Interesting about it's use for regulating blood sugar levels too, since some have found quite elevated levels during flares. http://www.iovs.org/cgi/content/abstract/iovs.08-2816v1 Lipophilic Vitamin-B1 Analogue Benfotiamine Prevents Endotoxin-Induced Uveitis in Rats Conclusion: These results suggest that benfotiamine suppresses oxidative stress-induced NF-B dependent inflammatory signaling leading to uveitis and therefore it could be used as a novel therapeutic agent for the treatment of ocular inflammation, especially uveitis. Thiamine http://en.wikipedia.org/wiki/Thiamine Thiamine or thiamin,[1] sometimes called aneurin, is a water-soluble vitamin of the B complex (vitamin B1), whose phosphate derivatives are involved in many cellular processes. The best characterized form is thiamine diphosphate (ThDP), a coenzyme in the catabolism of sugars and amino acids. In yeast, ThDP is also required in the first step of alcoholic fermentation. Thiamine is synthesized in bacteria, fungi and plants. Animals must cover all their needs from their food and insufficient intake results in a disease called beriberi affecting the peripheral nervous system (polyneuritis) and/or the cardiovascular system, with fatal outcome if not cured by thiamine administration.[2] In less severe deficiency, nonspecific signs include malaise, weight loss, irritability and confusion.[3] Today, there is still a lot of work devoted to elucidating the exact mechanisms by which thiamine deficiency leads to the specific symptoms observed (see below). Finally, new thiamine phosphate derivatives have recently been discovered,[4] emphasizing the complexity of thiamine metabolism and the need for more research in the field Beriberi https://health.google.com/health/ref/Beriberi Overview Beriberi is a disease in which the body does not have enough thiamine (vitamin B1). Symptoms Symptoms of dry beriberi include: Difficulty walking Loss of feeling (sensation) in hands and feet Loss of muscle function or paralysis of the lower legs Mental confusion/speech difficulties Pain Strange eye movements (nystagmus) Tingling Vomiting Symptoms of wet beriberi include: Awakening at night short of breath Increased heart rate Shortness of breath with activity Swelling of the lower legs Treatment The goal of treatment is to replace the thiamine your body is lacking. This is done with thiamine supplements. Thiamine supplements are given through a shot (injection) or taken by mouth. Other types of vitamins may also be recommended. Blood tests may be done after you are given thiamine supplements to see how well you are responding to the medicine. Causes There are two major types of beriberi: Wet beriberi affects the cardiovascular system. Dry beriberi and Wernicke-Korsakoff syndrome affect the nervous system. Beriberi is rare in the United States because most foods are now vitamin-enriched. If you eat a normal, healthy diet you should get enough thiamine. Today, beriberi occurs mostly in patients who abuse alcohol. Drinking heavily can lead to poor nutrition, and excess alcohol makes it harder for the body to absorb and store thiamine. A rare condition known as genetic beriberi is inherited (passed down through families). People with genetic beriberi lose the ability to absorb thiamine from foods. This can happen slowly over time and symptoms occur when the person is an adult. However, because doctors may not consider beriberi in non-alcoholics, this diagnosis is often missed. Beriberi can occur in breast-fed infants when the mother's body is lacking in thiamine. The condition can also affect infants who are fed unusual formulas that don't have enough thiamine. Getting dialysis and taking high doses of diuretics raise your risk of beriberi. http://www.nlm.nih.gov/medlineplus/ency/article/000771.htm Wernicke-Korsakoff syndrome Inability to form new memories Loss of memory, can be severe Loss of muscle coordination (ataxia) Unsteady, uncoordinated walking Making up stories (confabulation) Seeing or hearing things that aren't really there (hallucinations) Vision changes Abnormal eye movements Double vision Eyelid drooping Decreased or abnormal reflexes Problems with walk (gait) and coordination Muscle weakness and atrophy (loss of tissue mass) Abnormal eye movement Low blood pressure Low body temperature Fast pulse (heart rate) http://www.benfotiamine.org/ This site was established to provide visitors with comprehensive information about benfotiamine, a synthetic derivative of thiamine (vitamin B-1) which shows promise in treating a number of neurological and vascular conditions. Benfotiamine also appears to have beneficial anti-aging qualities, protecting human cells from harmful metabolic end products. Benfotiamine is not just for diabetics. Any population suffering from conditions brought about by unknown or inadvertent thiamine deficiencies should respond well to benfotiamine. Benfotiamine is emerging as the most effective of the thiamine compounds. With benfotiamine, the sustained increase of Thiamine Pyrophosphate (TPP) and the resulting activation of the enzyme transketolase in the system can produce beneficial effects on general nerve health, sciatica, neuropathy, retinopathy, nephropathy, polyneuropathy, peripheral neuropathy (PN), shingles, herpes zoster, fibromyalgia, general ageing, other nerve conditions, vascular health, blood pressure and coronary health for diabetics and non-diabetics alike. http://www.luckyvitamin.com/item/itemKey/6...ite=google_base Source Naturals Benfotiamine

If this is legit, quite scary... http://www.cdispatch.com/news/article.asp?aid=3646 Caledonia parents reconsider vaccine CALEDONIA — Parents of Caledonia elementary and middle school students are re-evaluating whether or not to allow their children to receive the H1N1 vaccine after nine high-school students went to the hospital Wednesday with complications from the vaccine. “I won’t be allowing my son to take it,” Ernie Philem, the father of a fourth-grader at Caledonia Elementary, said Thursday afternoon at the school. “I had already decided before all this happened. My wife had doubts about my decision, then when this happened she’s behind me 100 percent.” Nine students were transported to Baptist Memorial Hospital–Golden Triangle Wednesday, with symptoms ranging from hives, fever, shortness of breath and other reactions after being administered the swine flu vaccine at school, through a partnership with the Mississippi State Department of Health and the Mississippi University for Women nursing department.

MomMD, Do you have any reference for this? I'd really like to read it, if there's a study to that effect.

guy, I was looking at nettle leaf today as an inhibitor of TNFa, which is overexpressed in arthritis, psoriasis, inflammatory bowel disease etc. This article popped up and I thought of your post from yesterday. Maybe you can see if Finasteride is a TNFa blocker/reducer? http://www.hairloss-research.org/TNF-ahairloss.html Recent studies have conclusively shown that TNF-a plays a central role in the genetically programmed death (apoptosis) of hair cells in MPB (androgenetic alopecia). In fact, it is considered by several leading researchers to be the most significant factor in hair cell death, even possibly more significant than DHT. There are currently a few TNF-a inhibitors on the market (e.g. Enbrel, Remicade). These drugs are approved for use in the treatment of rheumatoid arthritis and Crohn's disease. Scalp hair growth has been occasionally observed as a side effect of using these compounds. Unfortunately these drugs are very expensive and administered by injection and infusion only. Surprisingly, the leaves of the common stinging nettle (Urtica dioica) have been found to contain substances that affect cytokine levels in the human body, particularly TNF-a. Nettle leaf extract has a long tradition as a medical remedy in Germany for inflammatory conditions such a rheumatoid arthritis and allergic rhinitis

http://www.physorg.com/news108987915.html Immune police recognize good and bad guys in the body Although, the majority of T cells that may harm healthy body tissue are eliminated in the thymus, some errant autoreactive cells can escape and cause autoimmune disease. Tregs previously believed to primarily recognize self-tissue with the idea of protecting it are considered the antithesis of these autoreactive cells. “It was believed that regulatory cells are baptized autoreactive cells,” says Dr. Ignatowicz. “They are like bad boys that went good,” since they also recognize self tissue but seek to protect it. Yet scientists kept running into the reality that some regulatory cells also were recognizing – and potentially protecting – invaders such as bacteria and viruses. Another interesting article http://www.physorg.com/news164281904.html GARP makes the difference June 15, 2009 Scientists from the Helmholtz Center for Infection Research in Braunschweig, Germany and the Medical School Hannover, Germany have succeeded in treating immune cells in a way that enables them to inhibit unwanted immune reactions such as organ rejection. Their results have now been published in the current issue of the scientific journal Journal of Cellular and Molecular Medicine.

Very good info regarding N acetylglucosamine (and glycobiology in general) on this site http://www.ultimateglucosamine.com/consume...cobiology.shtml

Ohhh...rereading this thread Elizabeth, I saw your statement I might have read that before ..can't remember, but that's useful! I have a young friend in his mid 20's who struggles with this disorder horribly. I keep wondering if this is a path he should pursue. Any little bit of info is so helpful. There's so much, it's hard to keep straight. I don't want him to try to come up with the funds, if it won't really prove anything in his case anyway, so your info was very helpful

Elizabeth, Thanks for the excellent reminder. Ok, let me ask you this, how do we distinguish btwn how fast the CaMk levels might fall? Is it not possible that the "TS" controls were just not in exacerbation. Seems the levels can stay elevated for a long time or might fall quickly after a treatment like IVIG? We have a report on this forum of mom having "normal" range CaMk and child having elevated, I think around 176 (?). Mom still has tics. I realize much of this is still unknown, so not really expecting any answer, just wondering out loud. SF Mom, How wonderful is that!