Guest guest Posted March 21, 2012 Report Share Posted March 21, 2012 Georgina, Hi Would there still be a measurable high level of strep antibodies in this 'autoimmune' case? >>>>>>>>>>>>>>>>>>>>>>>>>>>>> My understanding - No. But high level of strep antibodies would indicate potential RISK as part of the diagnostic approach especially in a child with autism who often have a dysregulated immune system, and don't let anyone tell you otherwise as a Mother who has almost lost her child to this kind of development. Many children with autism may have had other types of infection, viral, bacterial, fungal. In fact all these types of infection may be co-occuring with the strep. Put that alongside another very common feature, dysregulation of the immune system, hyperimmunity ( " ny is never ill " . There is a correlation between falling strep titres and clinical improvement, and that is certainly the case with my Son and a lot of other kids. As we know correlation is not causation, but its all we have got. it is the autoimmune component that is the killer. If you do not wipe out the strep and defeat it right from the start, it will keep recurring and get worse with each exacerbation. The best you can do is halt its development if you don't wipe it out. If autoimmunity has been established, the offending antibodies can't be killed off, and it is thought that only IVIG treatment or Plasmaphoresis can deal with the antibodies. Hence the constant battle of the bacteria getting used to antibiotics, finding another abx, the exacerbations, and the basal ganglia being under attack in every single exacerbation, and the intensification of the OCD. The autoimmune antibodies cannot be commercially tested for right now - just the strep titres. There is a test in the making and the lab is about to go commercial with this when its validity has been established. I will tell you about that and why it is significant later on in this post. How do we know if autoimmunity is established? From the degree of outward behaviour. Now, J is so vulnerable to strep. He picks it up so quickly I know the signs and treat it immediately by increasing abx or more recently have been able to boost the effect of the abx with natural immune boosters/vitamin. So, if you have a hyperimmune child, who is ticking boxes for pandas, test. But test during an exacerbation if possible to correlate the behaviour to the strep. Otherwise you will not get treatment for this condition as it is insufficiently understood. The theory behind that particular new test is that strep turns autoimmune because of a process called molecular mimicry, whereby the strep bacteria are resistant to the body's natural defences because they " mimic " them. The body thinks they are good guys and fails to recognise them as an invader. Hence the autoimmunity. There's no test to recognise the quantitative level of strep which is turning " autoimmune " . But medical research believes currently that an substance called Cam Kinase is secreted when the autoimmune process starts to happen, and when that test goes commercial its possible you can test " red alert " as it were. However like all medical theories that theory can be challenged. So we could go to doctors with that test, and they would say (as they do now) there's not enough evidence for it. And you could say, there's a whole lot of evidence for molecular mimicry as a process in Rheumatic Fever, which is a possible complication of an untreated Group A Strep infection. There's a whole lot of criteria called the Criteria which looks a lot like PANDAS/PANS. But the medical profession have the construct of autism to hide behind, which as we all know, is a crock. So the test won't be definitive: it will be read in line with clinical symptoms. caveat to this: You could have had a child showing every single pandas symptom in the book, but caught this test at the wrong time and it would show low, and very ignorant medical people (referring to NHS) would say, oh, there wasn't a problem. Titres fall on their own, but that doesn't mean to say the damage hasn't been done. I wish I could say different. Debate or questions welcome, my mind is completely open, and whatever critical points you would like to raise or play devil's advocate feel free. From my perspective, this is a key player in " autism " (whatever that is) along with many other strains of bacteria, viral and fungal. I cannot detoxify my Son right now, and it is even under debate whther my pulling of the recent virus is helpful, even though I have reversed the hyperimmunity. Because whilst you activate the virus (great, arguably) you also potentially activate autoimmune antibodies and this can be counter productive if they are attacking the brain. Eileen xxx W > > > > > ** > > > > > > > > > *Strep throat one minute, OCD the next: How bacterial infections in > > > children could cause behavioural issues* > > > > > > > > > > > > http://www.dailymail.co.uk/femail/article-2106125/Strep-throat-minute-OCD-How-ba\ cterial-infections-children-cause-behavioural-issues.html > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2012 Report Share Posted March 21, 2012 thank you Eileen x To: Autism-Biomedical-Europe From: biomed@...Date: Wed, 21 Mar 2012 22:30:37 +0000Subject: Re: Daily Mail: Strep throat one minute, OCD the next Georgina, HiWould there still be a measurable high level of strep antibodies in this 'autoimmune' case?>>>>>>>>>>>>>>>>>>>>>>>>>>>>>My understanding - No. But high level of strep antibodies would indicate potential RISK as part of the diagnostic approach especially in a child with autism who often have a dysregulated immune system, and don't let anyone tell you otherwise as a Mother who has almost lost her child to this kind of development.Many children with autism may have had other types of infection, viral, bacterial, fungal. In fact all these types of infection may be co-occuring with the strep. Put that alongside another very common feature, dysregulation of the immune system, hyperimmunity ("ny is never ill". There is a correlation between falling strep titres and clinical improvement, and that is certainly the case with my Son and a lot of other kids. As we know correlation is not causation, but its all we have got. it is the autoimmune component that is the killer. If you do not wipe out the strep and defeat it right from the start, it will keep recurring and get worse with each exacerbation. The best you can do is halt its development if you don't wipe it out. If autoimmunity has been established, the offending antibodies can't be killed off, and it is thought that only IVIG treatment or Plasmaphoresis can deal with the antibodies. Hence the constant battle of the bacteria getting used to antibiotics, finding another abx, the exacerbations, and the basal ganglia being under attack in every single exacerbation, and the intensification of the OCD.The autoimmune antibodies cannot be commercially tested for right now - just the strep titres. There is a test in the making and the lab is about to go commercial with this when its validity has been established. I will tell you about that and why it is significant later on in this post.How do we know if autoimmunity is established? From the degree of outward behaviour. Now, J is so vulnerable to strep. He picks it up so quickly I know the signs and treat it immediately by increasing abx or more recently have been able to boost the effect of the abx with natural immune boosters/vitamin. So, if you have a hyperimmune child, who is ticking boxes for pandas, test. But test during an exacerbation if possible to correlate the behaviour to the strep. Otherwise you will not get treatment for this condition as it is insufficiently understood.The theory behind that particular new test is that strep turns autoimmune because of a process called molecular mimicry, whereby the strep bacteria are resistant to the body's natural defences because they "mimic" them. The body thinks they are good guys and fails to recognise them as an invader. Hence the autoimmunity. There's no test to recognise the quantitative level of strep which is turning "autoimmune". But medical research believes currently that an substance called Cam Kinase is secreted when the autoimmune process starts to happen, and when that test goes commercial its possible you can test "red alert" as it were. However like all medical theories that theory can be challenged. So we could go to doctors with that test, and they would say (as they do now) there's not enough evidence for it. And you could say, there's a whole lot of evidence for molecular mimicry as a process in Rheumatic Fever, which is a possible complication of an untreated Group A Strep infection. There's a whole lot of criteria called the Criteria which looks a lot like PANDAS/PANS. But the medical profession have the construct of autism to hide behind, which as we all know, is a crock. So the test won't be definitive: it will be read in line with clinical symptoms. caveat to this:You could have had a child showing every single pandas symptom in the book, but caught this test at the wrong time and it would show low, and very ignorant medical people (referring to NHS) would say, oh, there wasn't a problem. Titres fall on their own, but that doesn't mean to say the damage hasn't been done. I wish I could say different. Debate or questions welcome, my mind is completely open, and whatever critical points you would like to raise or play devil's advocate feel free. From my perspective, this is a key player in "autism" (whatever that is) along with many other strains of bacteria, viral and fungal.I cannot detoxify my Son right now, and it is even under debate whther my pulling of the recent virus is helpful, even though I have reversed the hyperimmunity. Because whilst you activate the virus (great, arguably) you also potentially activate autoimmune antibodies and this can be counter productive if they are attacking the brain. Eileen xxxW> > > > > **> > >> > >> > > *Strep throat one minute, OCD the next: How bacterial infections in> > > children could cause behavioural issues*> > >> > >> > >> > > http://www.dailymail.co.uk/femail/article-2106125/Strep-throat-minute-OCD-How-bacterial-infections-children-cause-behavioural-issues.html> > >> > > > > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2012 Report Share Posted March 22, 2012 Thank you so much for this info, Eileen, I read it with great interest and finally understand what the heck everyone is talking about.  It makes me very glad that as a child my chronic strep did not go autoimmune although I was terribly terribly ill.  Ironically they did not remove my tonsils!!  I need to think about this in terms of - I just don't see cyclical stuff in him anymore, he is staying level and only making gains with no hiccups and it's been about 8 months and holding but I'm going to read up more about strep especially since it almost killed me when I was a child. Darla   On 21 March 2012 22:30, EileenC <biomed@...> wrote:  Georgina, Hi Would there still be a measurable high level of strep antibodies in this 'autoimmune' case? >>>>>>>>>>>>>>>>>>>>>>>>>>>>> My understanding - No. But high level of strep antibodies would indicate potential RISK as part of the diagnostic approach especially in a child with autism who often have a dysregulated immune system, and don't let anyone tell you otherwise as a Mother who has almost lost her child to this kind of development. Many children with autism may have had other types of infection, viral, bacterial, fungal. In fact all these types of infection may be co-occuring with the strep. Put that alongside another very common feature, dysregulation of the immune system, hyperimmunity ( " ny is never ill " . There is a correlation between falling strep titres and clinical improvement, and that is certainly the case with my Son and a lot of other kids. As we know correlation is not causation, but its all we have got. it is the autoimmune component that is the killer. If you do not wipe out the strep and defeat it right from the start, it will keep recurring and get worse with each exacerbation. The best you can do is halt its development if you don't wipe it out. If autoimmunity has been established, the offending antibodies can't be killed off, and it is thought that only IVIG treatment or Plasmaphoresis can deal with the antibodies. Hence the constant battle of the bacteria getting used to antibiotics, finding another abx, the exacerbations, and the basal ganglia being under attack in every single exacerbation, and the intensification of the OCD. The autoimmune antibodies cannot be commercially tested for right now - just the strep titres. There is a test in the making and the lab is about to go commercial with this when its validity has been established. I will tell you about that and why it is significant later on in this post. How do we know if autoimmunity is established? From the degree of outward behaviour. Now, J is so vulnerable to strep. He picks it up so quickly I know the signs and treat it immediately by increasing abx or more recently have been able to boost the effect of the abx with natural immune boosters/vitamin. So, if you have a hyperimmune child, who is ticking boxes for pandas, test. But test during an exacerbation if possible to correlate the behaviour to the strep. Otherwise you will not get treatment for this condition as it is insufficiently understood. The theory behind that particular new test is that strep turns autoimmune because of a process called molecular mimicry, whereby the strep bacteria are resistant to the body's natural defences because they " mimic " them. The body thinks they are good guys and fails to recognise them as an invader. Hence the autoimmunity. There's no test to recognise the quantitative level of strep which is turning " autoimmune " . But medical research believes currently that an substance called Cam Kinase is secreted when the autoimmune process starts to happen, and when that test goes commercial its possible you can test " red alert " as it were. However like all medical theories that theory can be challenged. So we could go to doctors with that test, and they would say (as they do now) there's not enough evidence for it. And you could say, there's a whole lot of evidence for molecular mimicry as a process in Rheumatic Fever, which is a possible complication of an untreated Group A Strep infection. There's a whole lot of criteria called the Criteria which looks a lot like PANDAS/PANS. But the medical profession have the construct of autism to hide behind, which as we all know, is a crock. So the test won't be definitive: it will be read in line with clinical symptoms. caveat to this: You could have had a child showing every single pandas symptom in the book, but caught this test at the wrong time and it would show low, and very ignorant medical people (referring to NHS) would say, oh, there wasn't a problem. Titres fall on their own, but that doesn't mean to say the damage hasn't been done. I wish I could say different. Debate or questions welcome, my mind is completely open, and whatever critical points you would like to raise or play devil's advocate feel free. From my perspective, this is a key player in " autism " (whatever that is) along with many other strains of bacteria, viral and fungal. I cannot detoxify my Son right now, and it is even under debate whther my pulling of the recent virus is helpful, even though I have reversed the hyperimmunity. Because whilst you activate the virus (great, arguably) you also potentially activate autoimmune antibodies and this can be counter productive if they are attacking the brain. Eileen xxx W > > > > > ** > > > > > > > > > *Strep throat one minute, OCD the next: How bacterial infections in > > > children could cause behavioural issues* > > > > > > > > > > > > http://www.dailymail.co.uk/femail/article-2106125/Strep-throat-minute-OCD-How-bacterial-infections-children-cause-behavioural-issues.html > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2012 Report Share Posted March 22, 2012 Hi Eileen, what a great explanation, might have to pass it onto my son's school. Do you have a link to the strep levels and what they mean? I can't find much online, I am presuming 800 is high as 's behaviour has really deteriorated since starting antibiotics. Do you know if removing the tonsils removes the problem ie the strep or even post removal will we need to continue fighting strep in the bloodstream? Sorry to ask all this but you seem to know what you are talking about! My other boys have levels of 400 which are unchanged on antibiotics so their immunes systems are not kicking in at all. Thanks, > > > > > > > ** > > > > > > > > > > > > *Strep throat one minute, OCD the next: How bacterial infections in > > > > children could cause behavioural issues* > > > > > > > > > > > > > > > > http://www.dailymail.co.uk/femail/article-2106125/Strep-throat-minute-OCD-How-ba\ cterial-infections-children-cause-behavioural-issues.html > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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