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kim
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Everything posted by kim
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Lori, Sorry you have to be here, but welcome. I just wanted to share that I have seen vidoe of kids doing what you are describing. My youngest son has done a little of that (oldest has never had any eye rolling, pulling). He said that he felt like he "needed to air his eyes out." I think he may have a feeling of dry eyes at times. His earliest symptoms were eye tics and gasping at the end of sentences along with "loss of ability/desire" to eat foods he had always eaten regularly. He still has an extremely limited diet. Tics are minimal, fairly infrequent bouts would not be noticable to anyone except someone very familiar with ticcy kids. I'm glad that you found this forum while your son is so young. You have a real advantage there. Have you been able to correlate increase in symptoms with seasonal allergies (if he has any that you know of) viral or bacterial illness, vaccination, diet, anything other than screens? Sounds like you're off to a good start!
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Melanie, Haven't used any of those types of drugs, so sorry can't be of any help. Wondering how Danny is doing though and what the Dr. advised?
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Richard, Wondering if you have read anything about this? http://cat.inist.fr/?aModele=afficheN&cpsidt=16390224 Mycoplasma pneumoniae infection and Tourette's syndrome Good that you are looking at strep too. Have you visited the PANDAS forum here? http://www.latitudes.org/forums/index.php?showforum=17 We have used Bontech vits for years. I do think they are very good overall, but as far as what vit is exactly right for your child, well that can be tricky. Some may not be able to handle the amt of vit B, for example (for some it maybe too high). I have a hard time getting enough of them into my youngest son to have him get the recommended daily of some of the stuff in them, so in that respect, they are not the best for him. You may be able to get your reg Dr. to test your sons zinc and copper levels. Since most are aware of Wilson's disease and a relationship to movement disorders, they seem not to have a problem with testing these things. My boys run low zinc. There are so many things to consider like your sons diet, etc. It's always hard rec a particular vit. If you go with Bontech, start low and gradually increase. We saw "hyper" at first, which I still attribute to the B vits.
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Patty, Just wondering how your son is doing on the amox? Also, did you see any behavioral changes or tics prior to starting the antibiotic, that you would attribute to the infection? If you do see any negative effects might be the dye. I think you can get a color free amox. If your son can handle artificial colors ( mine are not artificial color free, but I'm always trying!) as others have said, you might see good things. Just remember, it can be quite some time after the infection that you see an increase in any adverse behaviors related to the infection. I'm all for trying amox first to clear strep, but it's thought to have lost some of it's effectiveness. I think it's said by some to be around 70%. You might want to have a grown culture to make sure it's gone after you finish. I remember my boys going through 2 rounds of amox then a 3rd antibiotic when 2 rounds of amox didn't clear it. Not good for gut! If I knew then what I know now, I would not have allowed that repeatedly. My youngest son (12)has taken zith once for strep and amox once for strep in the last couple of years. I requested the zith the first time, 2nd time I decided to do amox and see what happened. He seemed to do fine with both. One time, he was SO sick. I had taken him to a walk in care because it was the weekend. About the 3rd time the Dr. harped on the fact that if I would have given him the flu shot, he wouldn't be there, I blew and we got in what I would call a full blown argument about the flu shot. This Dr. seemed to have never heard of thimerosal (not to mention that I believe the efficacy stinks) and insisted that I was an idiot for not knowing that mercury was banned in our state and that you couldn't even buy a mercury thermometer. I kept telling him to go and get a pkg insert from the vax (if it's drawn from multidose vial still contains same amt of thimerosal that it's always had) that they were distributing. Guess he didn't know about those new energy saving light bulbs either or the fact that the sprinkler system directly over his fat head had a goodly amt too. When the mercury heats up, the sprinklers are activated. Well, my son lost in that whole thing, because we stormed out (the jerk never did get the insert). A nurse followed me into the parking lot and asked if she could ask me what that was all about. She then shared that her kids weren't vaccinated after her son started staring at ceiling lights and had other autistic behaviors after a round of immunizations. I asked her why she was telling me this in a hushed voice. I told he she needed to be talking to THEM (other Dr.s witnessed the end of the exchange...i didn't exactly go out quietly). She said they didn't want to talk about it. I said, " Well I do and you should too." Anyway the next day we went to family Dr. and rapid strep was positive. If the "so called" Dr. would have done that (or I would have resisted the urge to rip him about the flu shot) I would have insisted. Sorry to get so off topic Patty, but I can't discuss strep without that ordeal coming to mind. *ashamed of resorting to name calling, but i think a bit theraputic, so I'm leaving it!
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Caryn, This is another take on the 1918 epidemic. Haven't read Mercola's article, but I do remember movement disorders being talked about in the 1918 events. http://www.naturalnews.com/026148.html This is a lady that I would trust any day of any week. She combines a lot of common sense with science (and the person that I have learned the very most from regarding vaccines). I read everything that I can get my hands on that she writes. I found this concerning. http://www.beyondconformity.org.nz/BlogRet...spx?BlogID=1598 edit...wrong link above http://www.beyondconformity.org.nz/_bpost_...#39;t_swine_flu
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Maryann, I don't think they are going to give anyone Tamiflu who doesn't have a confirmed case. I'm watching all of the news pretty carefully on this whole thing. Still so many unknowns and conflicting reports, shoddy info etc. If it became a reality for someone in my family, you can bet I would be googling away trying to guage the ole risk/reward of Tamiflu. The top of my list of prevention right now is Vit D or better yet, sunshine if you can get it. The more skin exposure the better. Gosh this nude sunbathing is chilly yet here tho Really, I think the recommendation is 20 minutes of 80% exposure. Supposed to generate up to 20,000 IUs, but this time of year probably too weak of rays (northern states) to generate anywhere near that much that quickly. My other possible flu fighters include elderberry extract, olive leaf extract, garlic, vit C and anti inflams like pom juice (pom wonderful is one that I believe has not been totally destroyed by processing) pure tart cherry syrup, motrin etc. I'm no where near convinced that this is any horrendous threat at this point but seems way to early to really tell. One theory to keep in mind regarding immune response http://www.voanews.com/english/Africa/2009-04-28-voa26.cfm also, since inflam serves it's purpose in infection fighting, not really thinking of prevention, just use while ill to keep it in check, along with antioxidants that most provide. Saw in a parent's notes from 2009 DAN conference that pure grape juice is still considered great antioxidant. Resveratrol as supplement is something we have never used, but might be quite beneficial too.
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http://www.ageofautism.com/2009/04/latest-...1156f643f0e970c Latest Autism Gene Studies Find….Not Very Much If you can make it all the way thru this article, it makes some very good points.
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http://www.sciencedirect.com/science?_ob=A...03f39c61c430d11 Cadherin-10 is a novel blood–brain barrier adhesion molecule in human and mouse and This demonstration of a distinctive expression pattern of cadherin-10 suggests that it has a pivotal role in the development and maintenance of brain barriers. http://www.latimes.com/features/health/la-...0,4441598.story The first of two Nature studies released Tuesday found that 65% of autistic participants shared a variation between cadherin 10 and cadherin 9, a region of the genome that controls cell-adhesion molecules in the brain. Those molecules help brain cells connect, and autism researchers have long suspected that trouble there may be linked to the disorder.
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Honest Christie, I had tears running right down my face reading your post. What wonderful news. I pray this is a long lasting result for your son and can imagine the relief and joy you must be feeling right now!
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Pssst......you guys, don't tell Cheri that I told you this, but it's Dr. Weil that really has Cheri's heart. Mercola runs 2nd. http://www.drweil.com/
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Sensory Issues linked to plastic water bottle & Pitocin?
kim replied to myrose's topic in Tourette Syndrome and Tics
I don't know that I have read of sensory issues specifically related to the "problem plastic" chemicals, but PCB article below article is along the same lines (seems very possible that bisphenol A and such could fit right in here too). These first two articles talk about the suspected problems with BPA. Also, the #7 being imprinted on the container is something I just heard for the first time about a week ago. If you have a 7 on the bottom of your plastic bottle, apparently you don't want to drink it! http://health.usnews.com/articles/health/l...ises-alarm.html http://www.hpakids.org/holistic-health/art...c-Water-Bottles This article is a little off topic, but again the way these things all interact, well who knows what's causing what.Dr. Pessah who was involved in this PCB research has also done thimerosal studies. Something in this article that stood out for me, was the statement about the dose. One argument that is constantly being made is that "dose makes the poison." They are finding that more is not always worse (sometimes smaller amts of toxin can be worse) and I think the first bolded statement is another example of this. How PCBs May Alter In Utero, Neonatal Brain Development http://www.sciencedaily.com/releases/2009/...90413204546.htm and and This is the abstract of one of the thimerosal studies that Pessah was involved in http://www.pubmedcentral.nih.gov/articlere...i?artid=1513334 Uncoupling of ATP-Mediated Calcium Signaling and Dysregulated Interleukin-6 Secretion in Dendritic Cells by Nanomolar Thimerosal Dendritic cells (DCs), a rare cell type widely distributed in the soma, are potent antigen-presenting cells that initiate primary immune responses. DCs rely on intracellular redox state and calcium (Ca2+) signals for proper development and function, but the relationship between these two signaling systems is unclear. Thimerosal (THI) is a mercurial used to preserve vaccines and consumer products, and is used experimentally to induce Ca2+ release from microsomal stores. We tested adenosine triphosphate (ATP)-mediated Ca2+ responses of DCs transiently exposed to nanomolar THI. Transcriptional and immunocytochemical analyses show that murine myeloid immature DCs (IDCs) and mature DCs (MDCs) express inositol 1,4,5-trisphosphate receptor (IP3R) and ryanodine receptor (RyR) Ca2+ channels, known targets of THI. IDCs express the RyR1 isoform in a punctate distribution that is densest near plasma membranes and within dendritic processes, whereas IP3Rs are more generally distributed. RyR1 positively and negatively regulates purinergic signaling because ryanodine (Ry) blockade a) recruited 80% more ATP responders, shortened ATP-mediated Ca2+ transients > 2-fold, and c) produced a delayed and persistent rise (≥ 2-fold) in baseline Ca2+. THI (100 nM, 5 min) recruited more ATP responders, shortened the ATP-mediated Ca2+ transient (≥ 1.4-fold), and produced a delayed rise (≥ 3-fold) in the Ca2+ baseline, mimicking Ry. THI and Ry, in combination, produced additive effects leading to uncoupling of IP3R and RyR1 signals. THI altered ATP-mediated interleukin-6 secretion, initially enhancing the rate of cytokine secretion but suppressing cytokine secretion overall in DCs. DCs are exquisitely sensitive to THI, with one mechanism involving the uncoupling of positive and negative regulation of Ca2+ signals contributed by RyR1 http://www.autismspeaks.org/science/resear...vator_award.php Recognition from Cure Autism Now in the form of the Environmental Innovator Award is allowing Dr. Pessah to pursue his hypothesis that mutations in specific types of calcium channels may contribute to certain forms of autism and significantly increase susceptibility to adverse effects of environmental toxicants. This hypothesis is based on evidence from the Pessah lab that organic mercury and other persistent toxins -- such as polychlorinated biphenyls, flame retardants (PBDEs), and agents that cause oxidative damage -- can alter the intracellular Ca2+ signals generated by ryanodine receptors (RyR), one important type of calcium channel. Signals generated by these receptors inside cells are essential for normal development and function of both the immune and nervous systems. Dr. Pessah's lab has already found that mice possessing mutations in RyR channels have heightened susceptibility to chemically-induced adverse reactions of the immune and nervous systems. -
Anyone have access to give us an idea if there is any new info here? accepted Jan 2009 http://www3.interscience.wiley.com/journal...=1&SRETRY=0 Immunopathogenic mechanisms in tourette syndrome: A critical review
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Reminder about having no medical background here, so if anyone can comment on (agreement or error) my way of thinking here, would luv to hear it. Seems this might be something parents would want to run by their childs Dr. prior to subsequent alum containing vaccines. Reading thru the "Phenotype" thread and the remarks about autoimmune issues in families, made me want to share something that has been nagging at me since I read it. Wondering if this raises red flags for any of you. I'm really surprised that there hasn't been more discussion regarding this on some of the sites that I scan almost daily. When these tendencies run in families, I have to wonder what part this could play in pushing some of our youngest into the autoimmune abyss. Could non excreted alum contribute to altered immune function? Could activating inflammasomes regularly at an early age somehow alter the immune system function? If toll-like receptors normally are first responders to microbes (some?) and you bypass them and activate inflammasomes (artificially with alum) I wondered what other mechanisms of the immune response might be altered. I had posted this article on the TS forum within the past week or so. Yesterday, I read the 2nd article. Toll like recptors signal vitamin A enzymes which protect against autoimmunity. But wait, we bypassed the toll like receptors and activated inflammosomes. What happens to the autoimmune protection that might have occured with natural infection? Gee, seems they would have wanted to have an idea about all of this prior to such widespread use of alum in such immature immune systems (or mature ones for that matter). If you read the whole article you will see discussion of Nalp3. Mice with no Nalp3=no response to alum. Well, what happens to someone with a polymorphism that upregulates Nalp3......hyperinflammation? The 3rd article seems to suggest this in at least one autoimmune related disease. http://www3.niaid.nih.gov/news/newsrelease...lum_vaccine.htm Scientists Discover How Common Vaccine Booster Works http://www.ncbi.nlm.nih.gov/pubmed/19252500 2009 Apr;15(4):401-9. Epub 2009 Mar 1. Toll-like receptor 2-dependent induction of vitamin A-metabolizing enzymes in dendritic cells promotes T regulatory responses and inhibits autoimmunity. Manicassamy S, Ravindran R, Deng J, Oluoch H, Denning TL, Kasturi SP, Rosenthal KM, Evavold BD, Pulendran B. Emory Vaccine Center, and Yerkes National Primate Research Center, 954 Gatewood Road, Atlanta, Georgia 30329, USA. bolding mine http://www.hu.liu.se/content/1/c6/08/78/08...0PSORIASIS1.pdf GENETIC ANALYSIS OF PSORIASIS In collaboration with the Swedish Psoriasis Association, a large patient sample has been collected with blood samples for DNA analysis. The main purpose has been to demonstrate the genetic contribution to the disease and to localise susceptibility genes. Psoriasis is a heterogeneous disease in which several reports suggest the presence of a susceptibility gene in or in the proximity of the HLA complex in chromosome 6p. There is an association between HLA-Cw6 and young onset of the disease. Psoriasis may show an enormous variation in duration, extent and morphology but the genetic basis for these clinical variations are poorly defined. Inflammasomes are cytoplasmic multiprotein complexes that mediate the maturation of proinflammatory cytokines. There is evidence for a critical role of the NALP inflammasomes in innate immunity and inflammatory diseases. For instance, polymorphisms in the gene coding for NALP3 were recently shown to associate with interleukin-1 production and severe inflammation. The aim of this study is to define genetic variations in NALP3 and other related genes in a psoriasis patient sample and to correlate these variants with different aspects of the disease. In this way, individuals with a high risk of a severe disease may be identified You can see a list of alum containing vaccines here Vaccine excipients including alum http://74.125.95.132/search?q=cache:21r3WC...=clnk&gl=us
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Why are long term antibiotics safe?
kim replied to bronxmom2's topic in PANS / PANDAS (Lyme included)
bronxmom2, I think this is the concern of your dr. http://www.druglib.com/druginfo/omnicef/wa...gs_precautions/ Cefdinir is a third generation cephalosporin. Has your daughter ever used Keflex? Keflex is a first generation cephalosprin anitbiotic. Maybe your Dr would feel more comfortable with it's use longer term? Remember, if your daughter was to develope some superinfection, it would be up to your Dr. to defend his decision regarding the long term use of this antibiotic. I don't think anyone is saying that ANY anti biotic use is perfectly safe with zero potential for unwanted side effects (disrupted gut flora, colonization with other bacteria, the bodies ability to metabolise it long term, etc.) it's the risk/reward ratio that has to be looked at carefully. If you want to argue it's use, you will have to become the expert! If he thinks you are truly informed, he will be more apt to take insights now and in the future, more into consideration. Don't take anyone's word for anything (including mine!). When an unexpected consequence pops up (especially when you are going against a Dr.s advice) I would imagine, it's not any fun. You have to know both sides of the issue very well and know that you educated yourself enough to stand by the consequences of that decision, no matter what. BTW, that was NOT a dumb question at all. Good luck today, and please let us know how it goes! -
Betty/momaw, Betty, are you using no fenol (enzyme)? http://www.enzymestuff.com/conditionsensitivities.htm#10 (lots of salicylate info here) This is probably the best place I have ever seen info constucted in one place (pathways of intolerance) You will probably need to read it several times to really grasp all of the implications http://overcomingcandida.com/autism_pst_vi...ns_minerals.htm I would also at least scan this page. If you apply some of what you learn from the PST article, you can start piecing together more of the info contained here. Yasko genetics page http://74.125.95.132/search?q=cache:0gVAX8...w.vsan.org/rok-
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For those of you who don't visit the PANDAS forum often, thought I would share this here too! NBC 10 news report,Philadelphia http://www.nbcphiladelphia.com/health/tips...iladelphia.html This is the thread, if anyone would like to read or leave a remark for the family http://www.latitudes.org/forums/index.php?showtopic=4589
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momaw, Could you say which supplements that your daughter was reacting negatively to? Have you tried any digestive enzymes?
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melanie, I'm so sorry I totally missed your question on this thread. I think it's generally thought that azith is a pretty good bet for clearing strep, especially if amox or Keflex etc. isn't cutting it. My boys were given round after round of amox when they were younger. I kept asking if it might be a good idea to switch antibiotics and was told that amox was just like water on a fire where strep was concerned. In hind site, I should have asked why they needed it for 30 days at a time, if that was the case, but in those days i never questioned a Dr. I was secure in the "they know best," mindset. Hopefully one of the parents with more experience will help you out with this question. It would be nice to know how long your son has been taking zith, what dose and history of anti biotics tried. I'm sorry I don't remember your son's story exactly (if you have already posted this info)
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Had to add this one since it specifically mentions TS. This study is in reference to the vinyl again. What really struck me was that 1 in 66 children were thought to have one of these disorders in this survey. I have read many times that the 1 in 150 that is referenced in many articles is an outdated number (in US anyway)! These were Swedish children. Don't know what #'s they report. http://www.science-direct.com/science?_ob=...9e490ff39740caf Associations between indoor environmental factors and parental-reported autistic spectrum disorders in children 6–8 years of age The 2005 survey, based on the same children, now 6–8 years of age, also asked if, during the intervening period, the child had been diagnosed with Autism, Asperger's syndrome, or Tourette's syndrome. From a total of 4779 eligible children, 72 (60 boys, 12 girls) were identified with parentally reported autism spectrum disorder.
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Another update on Somali Children. I won't be getting my hopes up that this will lead to any useful conclusions anytime soon, but it's tempting. http://www.nytimes.com/2009/04/01/health/01autism.html Autism Rates Are Higher for U.S.-Born Somali Children in Minneapolis Next thing we'll probably read is that it's a problem with exposure to vinyl flooring. Not saying that there isn't a problem with vinyl, but don't think it's a "stunning" probability that it's significantly involved in the huge increase in autoimmune/ spectrum disorders. http://www.environmentalhealthnews.org/ehs...-vinyl-flooring Scientists find 'baffling' link between autism and vinyl flooring Teresa Binstock wrote a nice article regarding this study. The reference articles are well worth looking at http://www.generationrescue.org/binstock/0...ng-Binstock.htm
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Problems with risperdal and natural calm(magnesium)
kim replied to mom2ck's topic in Tourette Syndrome and Tics
This discussion pretty much sums up my understanding of this type of testing. You'll see that he mentions "by products of dopamine." The 2nd one talks about blood and urine. As Olivia said, if you were to have blood and urine testing done, and could see a consistent rise (or fall) detected with a drug or supplement, you might be onto something. These tests are available, but you need to have pretty controlled circumstances to get consistent findings (just my take on it). http://forum.parkinson.org/forum/viewtopic.php?t=4714 National Parkinson Foundation Ask the Dr. and http://www.nlm.nih.gov/medlineplus/ency/article/003561.htm If you search the testing threads on this forum, you'll see tests like the Ion panel and others that test of the indicatiors of Catecholamine's. Great Plains and Metametrics are two labs that do these types of tests. Olivia, do you know who your son's testing was ordered through or the name of the test? -
article from 2005...tourettes/strep/ocd
kim replied to EAMom's topic in PANS / PANDAS (Lyme included)
Sunshine, Wow, I couldn't have hoped to read a better response! Would you mind taking large before and after photos (poster) detailing your sons improvements, treatment plan, explaining the detox program and the genetic findings? Especially, great detail regarding the CBS polymorphism would be really great Sure understand the remark about work. That must involve getting some of that paper that I used to buy stuff with, lol. The axe just keeps swinging closer to our (currently financially ok) necks here. Economic conditions are still making my job impossible, and hubby is about to get a big whack too, i'm afraid. I'm wondering if you could comment on what your biggest offender has turned out to be in regards to detox. So curious if you feel that aluminum/strep , was a big piece of the puzzle? With a CBS polymorphism, the mercury connection is (almost) easy to understand, but I'm not sure how alum would fit in that picture? BTW, my son's ankle no longer has 2 bones (spontaneous absorbtion most likely). I keep telling him that I can "cure" things like that, so keep taking what I tell him to, lol. He's 16 now, driving, and a total joy. I'm almost lucky if I see him long enough to get just his vits in him some days tho. -
Problems with risperdal and natural calm(magnesium)
kim replied to mom2ck's topic in Tourette Syndrome and Tics
Olivia, Your very welcome! Wondering if you could tell us what they saw in the blood work that was helpful? Sure can relate to the anger over noone acknowledging the movement being drug induced. Seems the undesirable side effects of modern medicine are far too rarely reported. Guy, Some articles say that TD movements can be indistinguishable from the original movements. I don't think it is strictly limited to the face/mouth/tongue, maybe just most common in this area? As in Olivia's son's case, if they aren't even acknowledging it, how often do you think it's reported and how accurate of info do you think people are really getting? Makes ya wonder. -
http://www.ncbi.nlm.nih.gov/pubmed/1549953...0,f1000m,isrctn Center for Immunology and Microbial Disease and Department of Pediatrics, Albany Medical College, Albany, New York 12208, USA. fernana@mail.amc.edu Macrolide antibiotics, including azithromycin, have been implicated in the modulation of host immune responses, independently of their antimicrobial properties. The present work was designed to study the effect that azithromycin has on protective humoral immune responses induced by a 7-valent, polysaccharide, pneumococcal conjugate vaccine (PCV7). By use of a murine vaccination/challenge model, it was found that inoculation with azithromycin led to significantly lower primary antibody responses, decreased recall proliferative responses, and, in nasal cavities, impaired clearance of Streptococcus pneumoniae serotype 14 from the nasal cavities. The results demonstrate that azithromycin can be inhibitory with regard to protective immune responsiveness. http://www.ingentaconnect.com/content/ben/...a420c21c2900e1a Abstract: Macrolide antibiotics are noted for their intracellular accumulation and activity against intracellular pathogens such as Mycoplasma pneumoniae, Chlamydia pneumoniae and Legionella spp. Apart from antimicrobial activities, macrolides can modify host cell functions. Indeed, several in vitro- and ex vivo-studies have shown that macrolides influence polymorphonuclear cell functions as well as cytokine production by several cell types. In this way macrolides may change host immune responses, and thus may be used as immunomodulating agents. Immunomodulation (i.e., therapy that modulates the immune response of the host) may serve as an important adjuvant to antibiotic therapy in the treatment of infectious diseases or infection-related illnesses in several ways: therapy may be aimed at upregulation of the inflammatory response in case the host response is too “weak”. Conversely, downregulation of inflammatory responses may protect the host against the deleterious consequences of immune hyper-activation, when the host response is too “vigorous”, or when the host response is too persistent. The scope of this manuscript is to describe the effects of macrolides on innate immunity in the pulmonary compartment (i.e., the innate host defense during pulmonary infections and pulmonary (non-infectious) inflammation). We will first describe the various in vitro- and ex vivo-effects of macrolides; thereafter, we will give an overview of animal studies on non-antimicrobial activities of macrolides. Finally, usage of macrolides in panbronchiolitis and cystic fibrosis is highlighted. The approach of using antibiotics (e.g., macrolides) as immunomodulating agents, however, carries the risk of (respiratory tract) colonisation and possible clinical infection with antibiotic-resistance organisms. http://www.ncbi.nlm.nih.gov/pubmed/1238366...0,f1000m,isrctn Comment in: Lancet. 2003 Jan 25;361(9354):349-50; aurhor reply 350. Long term azithromycin in children with cystic fibrosis: a randomised, placebo-controlled crossover trial. Equi A, Balfour-Lynn IM, Bush A, Rosenthal M. Department of Paediatric Respiratory Medicine, Royal Brompton Hospital, London, UK. BACKGROUND: The macrolide antibiotic azithromycin has anti-inflammatory properties potentially beneficial in cystic fibrosis. Since findings of open pilot studies seemed to show clinical benefit, we undertook a formal trial. METHODS: 41 children with cystic fibrosis, aged 8-18 years, and with a median forced expiratory volume in 1 s (FEV1) of 61% (range 33-80%) participated in a 15-month randomised double-blind, placebo-controlled crossover trial. They received either azithromycin (bodyweight < or =40 kg: 250 mg daily, >40 kg: 500 mg daily) or placebo for 6 months. After 2 months of washout, the treatments were crossed over. The primary outcome was median relative difference in FEV1 between azithromycin and placebo treatment periods. Sputum cultures, sputum interleukin 8 and neutrophil elastase, exercise testing, quality of life, antibiotic use, and pulmonary exacerbation rates were secondary outcome measures. Side-effects were assessed by pure tone audiometry and liver function tests. Analysis was by intention-to-treat. FINDINGS: Median relative difference in FEV1 between azithromycin and placebo was 5.4% (95% CI 0.8-10.5). 13 of 41 patients improved by more than 13% and five of 41 deteriorated by more than 13% (p=0.059). Forced vital capacity and mid-expiratory flow did not significantly change overall. 17 of 41 patients had 24 fewer oral antibiotic courses when on azithromycin than when taking placebo, and five had six extra courses (p=0.005). Sputum bacterial densities, inflammatory markers, exercise tolerance, and subjective well-being did not change. There were no noticeable side-effects. INTERPRETATION: A 4-6-month trial of azithromycin is justified in children with cystic fibrosis who do not respond to conventional treatment. The mechanism of action remains unknown.
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Here's the link!!!!!! Absolutely wonderful http://www.nbcphiladelphia.com/health/tips...iladelphia.html Nicm how brave of your daughter and your family to do that story. It may well help other children. I'm sure all here are greatful.