kim

peagreen, I don't know anything about how IVIG is screened for contamination, sorry. Hopefully someone else might have idea's about that. I did think that the whole story was interesting tho. The clickable at the top of the article gives more info. Read more at: http://www.huffingtonpost.com/david-kirby/...h_b_316986.html and http://www.medicalnewstoday.com/articles/166838.php Retrovirus Linked To Chronic Fatigue Syndrome

Apparently this study is part of a larger one that is going to look at effects of multiple vaccines. This was an excellent interview. http://www.cbsnews.com/video/watch/?id=536...=morephotovideo Does HepB Vaccine Cause Defects? CBS News Investigative Correspondent Sharyl Attkisson spoke with Dr. Andrew Wakefield about a recent study comparing the developmental differences between vaccinated and unvaccinated animals

I wanted to leave you this in addition to response on page 1 of this thread, to help you see my concern over giving your son Prevnar now, then the flu vaccines. I'm assuming these are all to be given some what close together. http://www.generationrescue.org/binstock/0...imer-autism.htm Aluminum in vaccination-associated cognitive decline, motor neuron disease, autism

MomMD, A couple of things come to mind. If it were me and there is not some reason that I'm not aware of, I think I would hold off on the Prevnar and get the flu shots only if there is a line of thought that the flu is a real threat to your sons health and that he will respond favorably to the vaccines. I would be CERTAIN that they are not the thimerosal containing vaccines. I have personally found that there is very liittle knowledge of the difference. Read the insert yourself. Many parents have encountered physicians or staff that just don't know that there is still thimerosal in the flu vaccines. Maybe this time is different because they are specifically making thimerosal free vaccines available to pregnant women and young children (is this routine or just if the parent knows enough to ask for the T free vaccine, I don't know). As far as Prevnar, that vaccine is conjugated to diphtheria protein. If your son failed the diptheria titer, it makes me wonder. I think he has probably had, what, DTaP, TDaP (some combination of) 4 or 5 times now? Then his Prevnar series, which again, is the S pneumonia saccharides of the capsules joined to the diptheria protein. He was younger when he recieved the Prevnar series, so by now he may respond to the saccharides alone (children under the age of 2 were shown not to respond to the saccharides, hence the addition of the diptheria protein and aluminum phosphate). I strongly question the wisdom of injecting a child with H1N1, seasonal flu and Prevnar. If there is a compromised bbb, the aluminum hydroxide is also concerning to me. Even if the bbb is not compromised it's still concerning IMHO. I'm sure your Dr. is aware of all of this and may be recommending Prevnar specifically (instead of a s pneu. vaccine that is not conjugated to diptheria) possibly to help battle insurance, but what she is recommending is something that I would have give a great deal of thought to, personally. I hope your little guy recovers quickly and you are able to take care of yourself too. I know you are still recovering from post PANDAS trauma yourself and I'm sure it's so difficult to deal with all of this. Hugs to you and your little sweeties

Buster's summary of different findings/views including Kurlan's http://www.latitudes.org/forums/index.php?...4&hl=Kurlan

Thanks Colleen. I'm leaning that way too. As I was typing this I heard a very barky cough coming from his room

Vickie, Yes. He was in Fri. last week. I wanted strep culture done because his throat was so sore, rapid negative. Older son had grown culture that was negative too. He had enlarged lymph nodes at that time. Dr. sent us home with script for z pac and just said to fill it if things weren't improving or worsening. It's so strange how both of them have been up and down from day to day. Both had extremely sore throats, body aches, TIRED in the beginning. Then one day of feeling better, then yucky again. They have both missed quite a few days of school with this. In the higher grades, it's much harder to maintain grades. I miss the elementary days

humm another article on this study http://www.medpagetoday.com/InfectiousDise...nControl/16216#

Colleen, Wondering how your kids are doing? We have been dealing with this illness for going on 2 weeks. Oldest is doing fine, he said his chest feels better. We never did start the antibiotic with him, but now my youngest son is home AGAIN today. He has an enlarged lymph node that's making his whole jaw bone sore. Head cold is still lingering, he's really snuffy. His nose is sore inside and now he's saying his throat feel really dry and a little sore again. I guess that's to be expected with all of the irritation from the cold. I just hate to see him in school with strep and the real possibility of H1N1 all over the place soon. I don't know if head cold symptoms are really associated with H1N1. I'm holding off on the z pac. I'm just not sure what's the right thing to do here.

It almost seems like they must have asked these people if they remember being around anyone with a sore throat. Can you see asking "do you remember being around anyone with a sore throat 5 years prior to the onset of your OCD?" I just can't come up with any other reason for the phrasing. It's almost comical. EAmom, I was so disgusted when a Dr. associated with TSA made a statement about there being no higher incidence of tics in kids within a thimerosal/neuro disorder study then in the general population. That wasn't the point at all. It specifically showed that children who recieved higher amounts of thimerosal had a higher incidence of tics. This same study made headlines on every news channel about.....yet another study showing no association of neurological problems in relationship to thimerosal. If I were serious about helping people with TS, and that association was found in 3 different studies, I'd want to know why. It has been totally blown off as far as I can see. I'm not sure that they are an association that is really interested in "cause" maybe more about new drugs? Maybe this isn't fair as I don't know that much about them.

The study was supported by the Tourette Syndrome Association. Well good spending of resources guys.

hey Faith, i was afraid i was just really dense today. I'm just scratching my head here. Look at this http://www.sciencedaily.com/releases/2009/...0930165028.htm# exposed to possible strep infection? How in the world do you determine if someone was exposed to a possible strep infection....then the statement about five years? I'm missing something. It just gets better. Why do they keep saying "possible strep infections?"

Oh erica, I see. I misunderstood what you meant. I get it now. I HATED to see that they are going to give the live nasal vaccine in the schools. They're doing it in stores where food is sold too. Why don't they just shoot it all over the produce too and get it over with?

I keep trying to figure out just what the significance of this is. http://www.upi.com/Health_News/2009/10/02/...72051254507608/ Study: OCD, Tourette's not caused by strep Are they saying that because there weren't more confirmed cases of strep in the ts/ocd group than in the regular population that there isn't an association? Just going by the little info available here, it seems that this is one poorly designed study to attach that strong of a title to it. If it would have been titled "No apparent increase in confirmed strep in TS/OCD patients than in general population," MAYBE (altho i don't know what that really proves either), but where do they get off with the conclusion suggested in that title?

Oh peglem now that is just sheer nonsense. ALL of these vaccines are simply for our own health including Gadasil for boys. If you have health issues, YOU ESPECIALLY need all of them! Underlying health problems cause problems with the real deal, but never the vaccine. Now, of course, I can't back that up because none of the vaccine makers want to inject a bunch of sick kids and see what happens, so they just license the vaccine and THEN inject the sick kids. If some have a bad outcome, oh well, we protected the healthy ones. Thihnk you can beat me at cynical??

erica, Just wondering why you think you would have to OK it? Is it that you think the flu is more of a threat than the vaccine or that you are thinking that your child wouldn't be allowed to stay in school? You don't have to ok it for sschool attendance at this point. Reading through everyone's remarks, I wanted to say that I almost started my oldest son on a z pac that Dr. sent home with us. He said not to give unless he seemed worse. Yesterday he came home from school early saying that he was coughing so hard that he couln't catch his breath. This morning he seemed ok, but I'm edgy about it. Still think starting the antibiotic might be wise. Strep was negative here too and neither son has had any fever, during the day at least. Maybe low grade that I didn't catch. I posted here somewhere that 50% (think it was 50%) of original H1N1 cases didn't have a fever though, even some of those hospitalized with respiratory problems. I have to wonder if this whole thing is really sound health based treatment, why no confirmed H1N1 cases with swabs at least? I read early on that they should be stock piling anitbiotics instead of vaccines as pneumonia was going to be the real threat. Again, if this was circulating all summer within summer camps and other places that kids gathered in close contact, why wouldn't we be seeing it now, with most schools being back in session for around a month. If what my boys had was not H1N1 and it circulates back to back with this virus, well that scares me. This doesn't seem easy to shake although not that much different than any other respiratory illness. One thing everyone who has had it keeps saying is that the sore throat is an unusally sore throat. Very painful

Just posted this on TS forum and pulled up a thread to leave here too. I wanted to add one thing though. Isn't it interesting how many people in this study showed antibodies? We've been told that this virus has circulated all summer, with outbreaks at summer camps etc. Isn't it logical to think that some of what we're seeing now is H1N1? excerpt from link below: At baseline, 76 of 240 subjects (31.7%) had antibody titers of 1:40 or more on hemagglutination-inhibition assay The above comments are from the recently completed clinical trial for H1N1 in healthy adults in Australia. Although cases with confirmed pandemic H1N1 were excluded from the study, over 31% of the participants had protective antibody prior to the first infection, signaling widespread influenza in undiagnosed adults. copy of post I took my oldest son to Physician assistant a couple of days ago. He had a sore throat, head cold which moved into his chest, body aches etc. She said he had about 50% reduced lower lung something (don't know if she said sounds?) She wanted to do a breathing treatment to rule out pneumonia. I told her he didn't react well to Albuterol and they were out of another drug, so she just kind of dropped it. He seems to be recovering well. I really only took him to rule out strep. My youngest son who is more prone to pneumonia is going today. He has the same symptoms, only he isn't saying that it's hard for him to take a deep breath (older son said it was mildly hard for him). I have read one of the dangers of H1N1 is that it seems to infect in the deeper part of the lungs. Again, I'm taking younger son mostly to make sure there is no sign of strep, which as Colleeen pointed out, they are now saying that coinfections seem to be the culprit with severe H1N1 and related deaths. Younger son said that there are a lot of kids with strep at his school. Fever has not been an issue althought oldest said he thinks he had one in the night that broke. Youngest is normal this morning. The PA shared that she had done her first H1N1 swab on a patient. She said the reason she swabbed this lady was because of all the symptoms + FEVER. She was negative, but again, I have read that the quick swabs are producing a lot of false negatives. After reading the article below, I'm wondering what everyone has???????? bolding mine/excerpt http://www.recombinomics.com/News/09220901...1_Trial_Ab.html Commentary Widespread Pandemic Antibody Confounds Clinical Trial Recombinomics Commentary 16:02 September 22, 2009 Data on symptomatic patients without fever suggests the frequency of infection without fever is above 50%. 30% of initial lab confirmed patients in Mexico, who were hospitalized because of breathing difficulties, did not have a fever. In Chile, the frequency of confirmed patients without fever was 50%. A recent study of transmission during a plane flight found that 36% of lab confirmed cases did not have a fever. Thought others might want to read this too. I have also read that resveratrol blocks infectivity, but didn't save that link. Looks like it would work prior to being infected tho or very early into infection, as is said with Tamiflu. Elderberry flavonoids bind to and prevent H1N1 infection in vitro. Roschek B Jr, Fink RC, McMichael MD, Li D, Alberte RS. Phytochemistry. 2009 Jul;70(10):1255- 61. http://www.sciencedirect.com/science?_ob=A...565eb910dd3fbfe

I took my oldest son to Physician assistant a couple of days ago. He had a sore throat, head cold which moved into his chest, body aches etc. She said he had about 50% reduced lower lung something (don't know if she said sounds?) She wanted to do a breathing treatment to rule out pneumonnia. I told her he didn't react well to Albuterol and they were out of another drug, so she just kind of dropped it. He seems to be recovering well. I really only took him to rule out strep. My youngest son who is more prone to pneummonia is going today. He has the same symptoms, only he isn't saying that it's hard for him to take a deep breath (older son said it was mildly hard for him). I have read one of the dangers of H1N1 is that it seems to infect in the deeper part of the lungs. Again, I'm taking younger son mostly to make sure there is no sign of strep, which as Colleeen pointed out, they are now saying that coinfections seem to be the culprit with severe H1N1 and related deaths. Younger son said that there are a lot of kids with strep at his school. Fever has not been an issue althought oldest said he thinks he had one in the night that broke. Youngest is normal this morning. The PA shared that she had done her first H1N1 swab on a patient. She said the reason she swabbed this lady was because of all the symptoms + FEVER. She was negative, but again, I have read that the quick swabs are producing a lot of false negatives. After reading the article below, I'm wondering what everyone has???????? bolding mine/excerpt http://www.recombinomics.com/News/09220901...1_Trial_Ab.html Commentary Widespread Pandemic Antibody Confounds Clinical Trial Recombinomics Commentary 16:02 September 22, 2009 Data on symptomatic patients without fever suggests the frequency of infection without fever is above 50%. 30% of initial lab confirmed patients in Mexico, who were hospitalized because of breathing difficulties, did not have a fever. In Chile, the frequency of confirmed patients without fever was 50%. A recent study of transmission during a plane flight found that 36% of lab confirmed cases did not have a fever. Thought others might want to read this too. I have also read that resveratrol blocks infectivity, but didn't save that link. Looks like it would work prior to being infected tho or very early into infection, as is said with Tamiflu. Elderberry flavonoids bind to and prevent H1N1 infection in vitro. Roschek B Jr, Fink RC, McMichael MD, Li D, Alberte RS. Phytochemistry. 2009 Jul;70(10):1255- 61. http://www.sciencedirect.com/science?_ob=A...565eb910dd3fbfe

I came across this article recently and wanted to leave it. I had posted something about blurry vision and uveitis a while back. Also, there was a thread about disregulated blood sugar levels recently. When I looked up "benfotiamene" all i could find was "benfotiamine," I'm wondering if it's the same? Interesting that benfotiamine is involved in glucose levels. excerpt http://www.betterhealthresearch.com/news/v...dness-19159004/ about uveitis http://autoimmunedisease.suite101.com/article.cfm/uveitis As an autoimmune disorder, uveitis may occur alone or it may accompany other systemic autoimmune diseases such as rheumatoid arthritis, Bechet syndrome, sarcoidosis, Kawasaki disease, Reiter disease, psoriasis, ulcerative colitis, multiple sclerosis, systemic lupus erythematosus, or ankylosing spondylitis. Uveitis may also occur in AIDS, cytomegalovirus infection, syphilis, tuberculosis, Lyme disease, and in fungal infections. http://www.iherb.com/Source-Naturals-Benfo...blets/7342?at=0 Benfotiamine is a more bioavailable derivative of thiamin (Vitamin B-1). Unlike normal thiamine, benfotiamine is fat-soluble and more physiologically active. It supports normal glucose utilization by stimulating transketolase, the enzyme essential for maintaining normal glucose metabolic pathways. Normal glucose levels are also vital for the promotion of endothelial cell health in the kidneys and retinas.

Peglem, I wish I knew something about the injections, I don't. I wanted to tell you though, for all of the posts that bring tears to your eyes this one was another. I'm SO happy that these Dr.s are willing to REALLY LOOK at what's going on with your baby and be excited to boot. I truly pray this will be the start of some major healing for her.

OhOh PANDAS Denmark, I think we were posting at the same time. GBS can be caused by strep? I read recently where strep had been grown/cultured from patients with Kawasaki disease, but don't remember reading anything about it in relationship to Guillain-Barre, which I have looked at a little recently, mostly because of the H1N1 vaccine.

Thanks for the replies! ShaesMom, It's the parent that's having the problem right now. He is under the care of what sounds like a Dr. who is trying to get to the bottom of things so I'm sure the testing is being done for autoimmune related illness, etc. What was bothering me, was if there was strep somewhere that wasn't obvious that could trigger these symptoms. I kept thinking ...what if he needs to be on an antibiotic and they are just assuming it's viral. I don't think most Dr.s would think of an adult with those symptoms as having a strep related illness (and maybe rightly so?). I'm very doubtful that there was any flu vaccine involved, i had thought of that too. I think it was too early for a seasoal flu vaccine, which hasn't been linked to GB as far as I know and there isn't one available for H1N1 yet. Again, thanks to everyone who responded. I think I panicked a little when I heard there was possible autoimmune related illness . This is a small group where members chat occasionally, more than research, altho most welcome any new info. I just didn't want to lauch into some possible "strep connection," if it doesn't make any sense.

I'm hoping some of you might be able to help with opinions on whether strep could be causing symptoms of Guillain-Barre in the parent of an older child with what has been diagnosed as TS. This is apparently a relapse of symptoms that started a few months back. Does anyone think ASO or AntiDnase titers would be helpful? If there is strep involvement (which I'm assuming original bloodwork did not indicate infection) is it worth even trying to point out? Do you think a viral infection is more likely the culprit? I'm pretty sure that's what the Dr.s thought originally. Again, I'm really wondering if PANDAS due to strep can cause the symptoms that he's experiencing. Has anyone had this muscle weakness/dizziness as primary symptoms with a PANDAS flare? I don't believe there are any psychiatric symptoms.

France, I'm wondering if you're familiar with the term PANDAS? The thing that struck me about your post was the word "dancing." This is often used in terms of a condition called Sydenham Chorea, which is also associated with Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcus (PANDAS). Sometimes when "tics" present as more fluid motions instead of jerky, it's referred to as chorea. Many times a Dr. will say a child as young as your son doesn't get strep (younger than average onset is reported by some parents on the PANDAS forum tho) , but right now it doesn't appear clear which types of strep or even if it's only strep that can cause these types of illness. Is there any unusual reactions to strep or other autoimmune conditions on either side? Any family history of rheumatic fever? I hope you will visit the PANDAS forum here too and educate yourself as to what to be on the lookout for, just in case. This is the link to that site. http://www.latitudes.org/forums/index.php?showforum=17 I'm also glad you found this forum. There are many people who are willing to help answer what ever questions you have and lend support when needed!

Here it is. bolding mine Protein array profiling of tic patient sera reveals a broad range and enhanced immune response against Group A Streptococcus antigens. Novartis Vaccines and Diagnostics, Siena, Italy. http://www.ncbi.nlm.nih.gov/pubmed/1962325...ogdbfrom=pubmed QUOTE This comparative analysis identified 25 antigens recognized by sera of the three patient groups and 21 antigens recognized by tic and pharyngitis sera, but poorly or not recognized by sera from children without tic. Interestingly, these antigens appeared to be, in quantitative terms, more immunogenic in tic than in pharyngitis patients. Additionally, a third group of antigens appeared to be preferentially and specifically recognized by tic sera. These findings provide the first evidence that tic patient sera exhibit immunological profiles typical of individuals who elicited a broad, specific and strong immune response against GAS. This may be relevant in the context of one of the hypothesis proposing that GAS antigen-dependent induction of autoantibodies in susceptible individuals may be involved the occurrence of tic disorders.