Chemar Posted February 28, 2010 Report Share Posted February 28, 2010 Yeah, but there is only one Dr. treating PANDAS who uses the steroid burst as a diagnostic tool. So, its fairly easy to deduce who you 'might' have been referencing..... Lets not argue about this.... He is a very kind, compassionate, detailed man who cares deeply about helping. Frankly, I think he deserves the Nobel Prize. SF mom you are again making assumptions without knowing the facts behind my comments this isnt the first time you have been very aggressive in your response to me but it just isnt the way we do things here, so I will not let this important thread be derailed further again, my purpose in posting to the thread was to caution anyone being advised to "try" a steroid burst that they should be very careful in case their child has TS as steroids may cause waxing of Tourette tics Link to comment Share on other sites More sharing options...
sf_mom Posted March 1, 2010 Report Share Posted March 1, 2010 Sorry you think my responses to be aggressive, not meant to be. Just trying to give another perspective. Yeah, but there is only one Dr. treating PANDAS who uses the steroid burst as a diagnostic tool. So, its fairly easy to deduce who you 'might' have been referencing..... Lets not argue about this.... He is a very kind, compassionate, detailed man who cares deeply about helping. Frankly, I think he deserves the Nobel Prize. SF mom you are again making assumptions without facts this isnt the first time you have been very aggressive in your response to me it just isnt the way we do things here, so I will not let this important thread be derailed further again, my purpose in posting to the thread was to caution anyone being advised to "try" a steroid burst that they should be very careful in case their child has TS Link to comment Share on other sites More sharing options...
PacificMama Posted March 1, 2010 Report Share Posted March 1, 2010 I certainly did not mean to start something here… Yes, it is INCREDIBLY DANGEROUS to take steroids if you have an infectious disease. I sincerely hope that people really get this: taking steroids could result in serious and permanent damage. Steroids suppress the immune system, which allows bacteria to take hold. I feel like I have to offer my support to Chemar here. While I have not been a longtime poster, I see enough to know that she must put in an incredible amount of her time to help us all find answers. And she always seems to be respectful and open to people’s ideas. Absolutely, any doctor that is willing to defend the idea that there is a physical reason behind neuropsych problems is to be commended. However, I do find it alarming to see Dr. K so readily recommending steroids. And I can say this from personal experience as we have consulted with him. I don’t want to initiate an argument as to Dr. K – he indeed has been helpful to many. However, he is out of his league when it comes to dealing with infectious diseases such as mycoplasma, lyme, etc. – and is quite dismissive of the role they may play (despite the fact that he give PITAND some allowance). Anybody here who suspects they may be dealing with an infection other than strep should seriously consider seeing a doctor who is more experienced in treating these infections. This is labeled the “PANDAS” board. However, the bigger umbrella label is “infectious agent that causes basal ganglia dysfunction”. It might be strep, it might be myco, it might be lyme, etc. I get a little frustrated when I see people so quick to tell a new or inquisitive poster “sounds like PANDAS”. All of these infectious agents cause nearly identical symptoms as it relates to neuropsych symtoms. And the disease presents itself it very similar ways: such as sudden onset following an illness, etc. People who aren’t positively sure it initiated with a strep infection need to consider every other possible infection. And they are much more common than people might imagine. I don’t even pretend to have this mastered. Mycoplasma is very often found as a coinfection to lyme, bartonella, etc. Mycoplasma is often found in people sufferering from any number of autoimmune diseases. People with lyme often complain of recurring strep infections. And on and on go the connections. As others have said, it would be so beneficial to get all the experts from all the divergent fields together in one room. Tomorrow time permitting I will attempt to gather cites for steroid use in myco. In the meantime, this is a recent article about mycoplasma that is fascinating and one of the best I’ve seen. It is an interview with Dr. Garth Nicolson who is the person who made the connection of mycoplasma to gulf war syndrome – as he himself suffered from myco. It has lab/testing recommendations, and treatment suggestions. (while the article title relates myco to coinfection of lyme, the article itself is really just about myco). Again, it’s highly recommended. http://www.immed.org/infectious%20disease%..._0709_v4.07.pdf Peace. Link to comment Share on other sites More sharing options...
kcdc3 Posted March 1, 2010 Author Report Share Posted March 1, 2010 I wholeheartedly believe that the doctors that are trying to help our children are doing so because they truly care about our children. I know that the steroid burst is somewhat controversial, and can appreciate those that just want to warn others of the detrimental side to it in differential cases. I also can appreciate those who want to defend the doctors doing this. All I can do as a parent of a PANDAS/PITANDS child who presents with tics and OCD is trust the doctors who know a whole heck of a lot more than I do. I can say that I feel comfortable in my particular situation - I know my doc has listened to my child's history and has checked for Lyme (negative) and based on my child's history(which he sat and listened to for well over an hour) that she does not have TS, so I'm sure that is why a burst was used. I feel confident that in most cases the histories are being checked, but it is always good to let those know who may be new to this and using a doctor who may not be as familiar with this phenomena to be very careful. Both points well taken. Link to comment Share on other sites More sharing options...
kcdc3 Posted March 1, 2010 Author Report Share Posted March 1, 2010 Tomorrow time permitting I will attempt to gather cites for steroid use in myco. In the meantime, this is a recent article about mycoplasma that is fascinating and one of the best I’ve seen. It is an interview with Dr. Garth Nicolson who is the person who made the connection of mycoplasma to gulf war syndrome – as he himself suffered from myco. It has lab/testing recommendations, and treatment suggestions. (while the article title relates myco to coinfection of lyme, the article itself is really just about myco). Again, it’s highly recommended.http://www.immed.org/infectious%20disease%..._0709_v4.07.pdf Peace. This is an interesting article, and am glad to see the part on there about waiting at least 2 hours before taking the pro-biotic (I did not know that!). I did notice, however, that this article is focusing primarily on Mycoplasma F, which tends to be the co-infector with Lyme. My dd has the Mycoplasma P....I think it is a totally different strain and tends to be what a lot of the PANDAS patients are presenting with that possibly do not have the strep connection. Link to comment Share on other sites More sharing options...
lyme_mom Posted March 1, 2010 Report Share Posted March 1, 2010 I certainly did not mean to start something here… Yes, it is INCREDIBLY DANGEROUS to take steroids if you have an infectious disease. I sincerely hope that people really get this: taking steroids could result in serious and permanent damage. Steroids suppress the immune system, which allows bacteria to take hold. I feel like I have to offer my support to Chemar here. While I have not been a longtime poster, I see enough to know that she must put in an incredible amount of her time to help us all find answers. And she always seems to be respectful and open to people’s ideas. Absolutely, any doctor that is willing to defend the idea that there is a physical reason behind neuropsych problems is to be commended. However, I do find it alarming to see Dr. K so readily recommending steroids. And I can say this from personal experience as we have consulted with him. I don’t want to initiate an argument as to Dr. K – he indeed has been helpful to many. However, he is out of his league when it comes to dealing with infectious diseases such as mycoplasma, lyme, etc. – and is quite dismissive of the role they may play (despite the fact that he give PITAND some allowance). Anybody here who suspects they may be dealing with an infection other than strep should seriously consider seeing a doctor who is more experienced in treating these infections. This is labeled the “PANDAS” board. However, the bigger umbrella label is “infectious agent that causes basal ganglia dysfunction”. It might be strep, it might be myco, it might be lyme, etc. I get a little frustrated when I see people so quick to tell a new or inquisitive poster “sounds like PANDAS”. All of these infectious agents cause nearly identical symptoms as it relates to neuropsych symtoms. And the disease presents itself it very similar ways: such as sudden onset following an illness, etc. People who aren’t positively sure it initiated with a strep infection need to consider every other possible infection. And they are much more common than people might imagine. I don’t even pretend to have this mastered. Mycoplasma is very often found as a coinfection to lyme, bartonella, etc. Mycoplasma is often found in people sufferering from any number of autoimmune diseases. People with lyme often complain of recurring strep infections. And on and on go the connections. As others have said, it would be so beneficial to get all the experts from all the divergent fields together in one room. Tomorrow time permitting I will attempt to gather cites for steroid use in myco. In the meantime, this is a recent article about mycoplasma that is fascinating and one of the best I’ve seen. It is an interview with Dr. Garth Nicolson who is the person who made the connection of mycoplasma to gulf war syndrome – as he himself suffered from myco. It has lab/testing recommendations, and treatment suggestions. (while the article title relates myco to coinfection of lyme, the article itself is really just about myco). Again, it’s highly recommended. http://www.immed.org/infectious%20disease%..._0709_v4.07.pdf Peace. I totally agree with PacificMama that steroids are contraindicated if you have an infectious disease like Lyme. Before they learned that Lyme is a bacteria some doctors treated lyme patients with steroids and those patients got terribly ill. This is how they learned so much about what late stage lyme looks like. You absolutely do not want to use steroids unless you are sure that lyme is not involved. It is not easy to know if lyme is involved. I came to this board because my cousin's daughter has symptoms of PANDAS and she wanted me to read about it because there has been a lot of discussion about Lyme Disease and she knew some of it was incorrect. My family has been dealing with this awful disease for almost two years and I know as much about Lyme as most of you do about PANDAS. As I read many of the posts on this site it is clear to me that many of these children have Lyme-like symptoms and they are not being evaluated by Lyme knowledgeable physicians nor are many of them getting the best lyme blood tests. Nothing against the PANDAS doctors but they cannot be experts at everything and tick-borne illnesses is a speciality that takes a lot of time and experience. Let me just say this again: There is NO reliable blood test for Lyme. I have said this over and over on this board and quite a few of you have listened, contacted me and sought better testing from the Igenex Lab. Some of you have learned that you are dealing with lyme too and this is very important info. If you want to be sure that your child does not have a Lyme or other tick-borne disease infection you must be evaluated by a "lyme-literate" doctor. It would help to have the lyme test done by the best lab as well (igenex in california). I would not rely on any doctor who is not Ilads-trained (ilads.org) to tell me whether or not my child has lyme and I would travel as far as is necessary to find an ilads doctor to evaluate my child (and I have done this repeatedly for almost two years). I feel so bad for what all of you are going through and I know how hard it is to have a sick child. Getting my kids well has been my focus for almost two years. I only offer this advice, as PacificMama and others who understand Lyme do, so that you do not let too much time go by before making this critical evaluation. The sooner you start to treat lyme the better the outcome. My cousin whose child was diagnosed with PANDAS sought better testing and consulted with a Lyme literate doctor. This doctor suspected lyme and/or coinfections and the Igenex test and a Babesia test confirmed that this child also has Lyme and Babesia in addition to strept issues. This is critical information that will help her get well faster! You need to be on the right drugs to kill these microbes. For example, Babesia can cause mental symptoms and you need malaria medication to kill it. She was lucky that she got a positive test b/c Babesia testing is also very unreliable. As PacificMama said in an earlier post, the most knowledgeable pediatrician in the world for Lyme told her that PANDAS symptoms can be caused by lyme/coinfections. He told me the same thing and said that Bartonella (a lyme coninfection) can cause these symptoms. He knows what he is talking about, believe me. He has treated the sickest of the sick kids for forty years and has seen over 15,000 patients! My other doctor who is a lyme specialist treats many children with PANDAS symptoms too and he told me that many of these children with PANDAS symptoms have lyme infections. I think it is very interesting that Dr. T has noticed that 80 percent of his patients are positive for band 41. He doesn't say what test he uses but one has to wonder if these children had the Igenex lyme test how many would actually be positive for lyme? The Igenex test is better than the tests covered by insurance b/c it includes testing for the two most significant antibody bands for Lyme, numbers 31 and 34. All other tests do not test for these lyme antibody bands. If your child has not had this test or one from Clongen Labs in MD, you can't know if they are negative for lyme. One last note, the top lyme pediatrician I referred to above believes that any child with lyme symptoms and even one lyme-specific antibody should be treated for lyme. He and my other doctor do not rely on the tests. If the patients has lyme symptoms they treat. He has told me that he treats the patient, not the test result. Please take this information to heart because it could save you a lot of grief down the road if you have lyme/coinfections in your family. Lyme Mom Link to comment Share on other sites More sharing options...
sf_mom Posted March 1, 2010 Report Share Posted March 1, 2010 I have spent hours with Dr. K and maybe why I feel the need to clarify for others reading these particular posts. Dr. K is by no means is an advocate of steroid use. As a matter of fact, he would not prescribe steroids when my son was re-exposed strep just two weeks ago. His response to me.... its important to see which way your son will respond symptomatically to exposure. He uses a 5 day steroid burst only to determine auto-immune and potential effectiveness of IVIG treatment for the child and it is a fairly low dose burst. I was by no means taking offense to the topic and potential downsides of steroid use with regards to other potential infectious diseases or TS. I thought I was fairly clear to Chemar and 'what appeared' to be a direct slight to one of the few treating Dr.'s of PANDAS. She says it wasn't a direct slight to Dr. K........ as Chemar has stated, we have had our share of heated discussions on this forum before but no matter how heated it becomes there is value in the discussions. Her inbox is probably filled with PMs just as mine is tonight. I will be forever grateful to this particular Dr. and just as he did for my son, he will continue to do for many, many, more children. I look forward to when his case history is published. I certainly did not mean to start something here… Yes, it is INCREDIBLY DANGEROUS to take steroids if you have an infectious disease. I sincerely hope that people really get this: taking steroids could result in serious and permanent damage. Steroids suppress the immune system, which allows bacteria to take hold. I feel like I have to offer my support to Chemar here. While I have not been a longtime poster, I see enough to know that she must put in an incredible amount of her time to help us all find answers. And she always seems to be respectful and open to people’s ideas. Absolutely, any doctor that is willing to defend the idea that there is a physical reason behind neuropsych problems is to be commended. However, I do find it alarming to see Dr. K so readily recommending steroids. And I can say this from personal experience as we have consulted with him. I don’t want to initiate an argument as to Dr. K – he indeed has been helpful to many. However, he is out of his league when it comes to dealing with infectious diseases such as mycoplasma, lyme, etc. – and is quite dismissive of the role they may play (despite the fact that he give PITAND some allowance). Anybody here who suspects they may be dealing with an infection other than strep should seriously consider seeing a doctor who is more experienced in treating these infections. This is labeled the “PANDAS” board. However, the bigger umbrella label is “infectious agent that causes basal ganglia dysfunction”. It might be strep, it might be myco, it might be lyme, etc. I get a little frustrated when I see people so quick to tell a new or inquisitive poster “sounds like PANDAS”. All of these infectious agents cause nearly identical symptoms as it relates to neuropsych symtoms. And the disease presents itself it very similar ways: such as sudden onset following an illness, etc. People who aren’t positively sure it initiated with a strep infection need to consider every other possible infection. And they are much more common than people might imagine. I don’t even pretend to have this mastered. Mycoplasma is very often found as a coinfection to lyme, bartonella, etc. Mycoplasma is often found in people sufferering from any number of autoimmune diseases. People with lyme often complain of recurring strep infections. And on and on go the connections. As others have said, it would be so beneficial to get all the experts from all the divergent fields together in one room. Tomorrow time permitting I will attempt to gather cites for steroid use in myco. In the meantime, this is a recent article about mycoplasma that is fascinating and one of the best I’ve seen. It is an interview with Dr. Garth Nicolson who is the person who made the connection of mycoplasma to gulf war syndrome – as he himself suffered from myco. It has lab/testing recommendations, and treatment suggestions. (while the article title relates myco to coinfection of lyme, the article itself is really just about myco). Again, it’s highly recommended. http://www.immed.org/infectious%20disease%..._0709_v4.07.pdf Peace. Link to comment Share on other sites More sharing options...
PacificMama Posted March 1, 2010 Report Share Posted March 1, 2010 QUOTE(PacificMama @ Feb 28 2010, 09:02 PM) Tomorrow time permitting I will attempt to gather cites for steroid use in myco. In the meantime, this is a recent article about mycoplasma that is fascinating and one of the best I’ve seen. It is an interview with Dr. Garth Nicolson who is the person who made the connection of mycoplasma to gulf war syndrome – as he himself suffered from myco. It has lab/testing recommendations, and treatment suggestions. (while the article title relates myco to coinfection of lyme, the article itself is really just about myco). Again, it’s highly recommended. http://www.immed.org/infectious%20disease%..._0709_v4.07.pdf Peace. This is an interesting article, and am glad to see the part on there about waiting at least 2 hours before taking the pro-biotic (I did not know that!). I did notice, however, that this article is focusing primarily on Mycoplasma F, which tends to be the co-infector with Lyme. My dd has the Mycoplasma P....I think it is a totally different strain and tends to be what a lot of the PANDAS patients are presenting with that possibly do not have the strep connection. -------------------------- Yes, the article focuses on myco f, but does discuss both f and p -- and both are indicated in causing neuropsych symptoms. Myco is very fascinating, and I'm sure we will continue to hear more about it. The good news for you is that myco p seems to be more readily treatable than myco f. Glad you found out about 2 hour rule with taking probiotics and abx... so important to not cancel each other out! Link to comment Share on other sites More sharing options...
jewels Posted March 1, 2010 Report Share Posted March 1, 2010 Hi We don't really treat Lyme in the UK, but some of the Drs here feel its a silent horrible condition that is rising fast. They don't have the tests in main hospitals that can pick up the unusual. I do see a big link that our children suffer with the unusual. It's a pity that we cannot get them tested for every related infection etc that all the parents are coming across. The UK now treat Lyme with IV abx and they still state it's hard to treat. Some of the private hospitals run a range of different tests as it can be so often missed here. Our Dan dr did say left untreated it could cause neuro symptoms in children. If anyone wants to know what the private tests are please let me know. Furthermore, a number of studies have revealed that as many as 50% of Borreliosis cases, confirmed by Borrelial DNA or Borrelial culture, were reported as negative when tested using the CDC's recommendations. In an interlaboratory comparison study of tests for the detection of B. Burgdorferi, by the College of American Pathologists, it was concluded that "these tests will not be useful as a screening test until their sensitivities are improved". It should be noted that a few patients may have infection without the presence of antibodies (seronegative), and this is often because of early antibiotic treatment or other medications, such as steroids. The serodiagnosis of late disease requires good specific clinical histories, and with some patients there may need to be a trial of treatment. Western blot ( immunoblot), ELISA (Enzyme-Linked ImmunoSorbent Assay) and PCR (polymerase chain reaction) can be performed on blood or cerebrospinal fluid (CSF), which is obtained via a lumbar puncture. However, in addition to the limitations of testing described above, antigen capture in CSF can be extremely elusive; reportedly CSF yields positive results in only 10-30% of patients cultured. Therefore, the diagnosis of neurologic borrelial infection should not be excluded solely on the basis of a negative CSF antibody analysis. Link to comment Share on other sites More sharing options...
Fixit Posted March 1, 2010 Report Share Posted March 1, 2010 so not surprised son came up negative on lyme blood test per labcorp you would suggest igenex over a western blot? also son starte clarithoymichn today is his 5th dose can i still check for this, would it be worth it? Link to comment Share on other sites More sharing options...
jewels Posted March 1, 2010 Report Share Posted March 1, 2010 Hi fixit I don't how they test in US, but this is a rundown of how one (private) hospital here does things. Hope this helps After a person becomes infected with borreliosis by a tick or other blood-feeding insect, the person may develop a resulting skin rash. Sometimes later a chronic rash can occur, with fever, headache and pain in the muscles and joints. Some infected people may not experience any noticeable symptoms at the time of infection. Without treatment, the symptoms can last for weeks or even longer. Sometimes serious complications may occur several years later including arthritis, heart problems, nervous system problems and/or neurological abnormalities. Lyme disease facts: •Lyme disease is caused by bacteria transmitted to humans via the bite of an infected tick •7 to 10 days after an infected tick’s bite, the first stage of Lyme disease begins with flu-like symptoms such as fever, chills, swollen lymph nodes, headaches, fatigue, muscle aches and joint pain •Neurological complications most often occur in the second stage of Lyme disease •Complications include numbness, pain, weakness, visual disturbances, and meningitis symptoms such as fever, stiff neck, and severe headaches •Weeks, months, or years after a tick bite, other problems, such as difficulty with concentration, irritability, depression, fatigue, muscle pain, memory and/or sleep disorders and nerve damage may occur •If a tick bite has not been noticed, these symptoms often get misdiagnosed as fibromyalgia, chronic fatigue or psychiatric problems •There is controversy over the testing of Lyme disease. Serological tests may not pick it up, leading to falsely negative diagnosis. Clinical diagnoses of borreliosis may be made but it is helpful to have other laboratory evidence of infection •The treatment outcome of Lyme disease depends on numerous factors including the duration of infection, the number of tick bits, the strength of the person’s immune system and his/her detoxification capacity Unfortunately the many common symptoms lead to many cases of borreliosis being undiagnosed or misdiagnosed. Many undiagnosed sufferers have been told that the symptoms are just in their heads. The standard investigations at Breakspear Hospital for borreliosis are: •Borrelia antibody evaluation by ELISA technique, which measures antibodies to the organism. •Polymerase Chain Reaction test for Borrelia burgdorferi, which measures the presence of the DNA – the chromosomes of the organism from the patient. •Lymphocyte Transformation Test for Borrelia burgdorferi (LTT MELISA), which, if the results are positive, demonstrates current active infection with the organism. •Borrelia burgdorferi IgG and IgM antibody evaluation by the Immunoblot/Western Blot technique, which detects portions of the Lyme disease organism. There are other investigations that may be undertaken. Tests of specific Lyme related lymphocyte reactions can be performed. The outer surface peptides often camouflage the organisms and reactions to these may be evaluated. We can also measure co-factor infections of Borrelia Link to comment Share on other sites More sharing options...
Fixit Posted March 1, 2010 Report Share Posted March 1, 2010 Hi fixit I don't how they test in US, but this is a rundown of how one (private) hospital here does things. Hope this helps After a person becomes infected with borreliosis by a tick or other blood-feeding insect, the person may develop a resulting skin rash. Sometimes later a chronic rash can occur, with fever, headache and pain in the muscles and joints. Some infected people may not experience any noticeable symptoms at the time of infection. Without treatment, the symptoms can last for weeks or even longer. Sometimes serious complications may occur several years later including arthritis, heart problems, nervous system problems and/or neurological abnormalities. Lyme disease facts: •Lyme disease is caused by bacteria transmitted to humans via the bite of an infected tick •7 to 10 days after an infected tick’s bite, the first stage of Lyme disease begins with flu-like symptoms such as fever, chills, swollen lymph nodes, headaches, fatigue, muscle aches and joint pain •Neurological complications most often occur in the second stage of Lyme disease •Complications include numbness, pain, weakness, visual disturbances, and meningitis symptoms such as fever, stiff neck, and severe headaches •Weeks, months, or years after a tick bite, other problems, such as difficulty with concentration, irritability, depression, fatigue, muscle pain, memory and/or sleep disorders and nerve damage may occur •If a tick bite has not been noticed, these symptoms often get misdiagnosed as fibromyalgia, chronic fatigue or psychiatric problems •There is controversy over the testing of Lyme disease. Serological tests may not pick it up, leading to falsely negative diagnosis. Clinical diagnoses of borreliosis may be made but it is helpful to have other laboratory evidence of infection •The treatment outcome of Lyme disease depends on numerous factors including the duration of infection, the number of tick bits, the strength of the person’s immune system and his/her detoxification capacity Unfortunately the many common symptoms lead to many cases of borreliosis being undiagnosed or misdiagnosed. Many undiagnosed sufferers have been told that the symptoms are just in their heads. The standard investigations at Breakspear Hospital for borreliosis are: •Borrelia antibody evaluation by ELISA technique, which measures antibodies to the organism. •Polymerase Chain Reaction test for Borrelia burgdorferi, which measures the presence of the DNA – the chromosomes of the organism from the patient. •Lymphocyte Transformation Test for Borrelia burgdorferi (LTT MELISA), which, if the results are positive, demonstrates current active infection with the organism. •Borrelia burgdorferi IgG and IgM antibody evaluation by the Immunoblot/Western Blot technique, which detects portions of the Lyme disease organism. There are other investigations that may be undertaken. Tests of specific Lyme related lymphocyte reactions can be performed. The outer surface peptides often camouflage the organisms and reactions to these may be evaluated. We can also measure co-factor infections of Borrelia We had live in pa for 4years-4 years ago...we also visit pa, nj, va frequetnly....and i have taken a few tics off of ds....can't say i've noticed iniital onset but some of the tics were in his hair so i woulnt see a ring he frequetnly complains of being tired, cant sleep, neck pain, migrainse, glare so the lab came up neg on the blood and i don't feel like that is our cause...but because of seeing tics and his current conditions i'd guess i'd like to just double check I do think our myco test is our answer seeing as it was always strep prior...and i'm so pissed for the docs who said no coreelation in a pissed tone because now,,,,when the last couple of times he(about 3 episodes) ticced but came up neg on both strep tests made me wonder why the antiboitcs still worked (they gave me antibiotcs because he is so prone to strep and on clinical vist could see he was fighting something and assumed the culture would come back poistive....it did not) ...so now i wonder if the last 3 times were myco but i got it early with the right anitbiiotc and not cephelcis(which i don't think he's ever had before)....my sons tics are more than mild ,.......on a scle of 1-10 i would say they are a solid 7 they run through his whole body....it's bad in his head, neck right now....but the legs seem consistant on this run....it's like i'm living with an elephant and i'm affraid the pictrues are going to fall off the wall......stomping.jumping......anyone else have this(when i read the mcyo p articles where the kids had it in their arms and legs made me feel like such a connection) Link to comment Share on other sites More sharing options...
Chemar Posted March 1, 2010 Report Share Posted March 1, 2010 fixit if you have removed ticks from your son and he may ever have been bitten by them then it is really a good idea to have Lyme testing done we have a family at our church who have all been thru incredible health woes over the years, especially the daughter, who was dx with epilepsy and a whole host of other stuff turns out they all have Lyme Disease likely dating from when they lived in the northeast http://www.lymenet.org/ is one of the best websites covering all things related to Lyme Disease and there is also some helpful info archived at NeuroTalk http://neurotalk.psychcentral.com/forum91.html Link to comment Share on other sites More sharing options...
Fixit Posted March 1, 2010 Report Share Posted March 1, 2010 fixitif you have removed ticks from your son and he may ever have been bitten by them then it is really a good idea to have Lyme testing done we have a family at our church who have all been thru incredible health woes over the years, especially the daughter, who was dx with epilepsy and a whole host of other stuff turns out they all have Lyme Disease likely dating from when they lived in the northeast http://www.lymenet.org/ is one of the best websites covering all things related to Lyme Disease and there is also some helpful info archived at NeuroTalk http://neurotalk.psychcentral.com/forum91.html is it too late to test...i start clarithomycine 5 days ago Link to comment Share on other sites More sharing options...
Chemar Posted March 1, 2010 Report Share Posted March 1, 2010 I honestly dont know if the AB interferes with the testing may be something to ask on Lymenet as they really know their Lyme stuff there Link to comment Share on other sites More sharing options...
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