Guest guest Posted February 16, 2011 Report Share Posted February 16, 2011 haven't done one of these in a long time as he has been recovered and we have been in stand still dealing with PANDAS as our last issue health wise. we had redone a lot of our test just a few months ago on all our kids and levis IGG came back BEAUTIFUL!!! no real issues or foods to remove!! yeah and some new ones that we had challenged came back clean so adding in MORE foods that get to stay!! yeah happy dance. we have now over the years been able to add in over 35 foods both IGE and IGG issues before!!! that with healing his body his body can now tollerate! and not just on labs but challenged on and RETESTED as safe! his OATS came back showing we have some clostrida that is back and some yeast (he is on prophatic antibiotics, 3 of them ALL the time with him having PANDAS) so not to big a suprize and honestly not as high as I would expect. we had seen a huge regression a few weeks back when my son was re exposed to strep, (funny I said one day we are flaring this is a mess to the NEXT day getting a call from school saying a kid called in sick with strep that NEXT DAY- this is the 6th time we have seen this exact pattern with the schools and flares) tring to go off of clymindamyacin which apparently was addressing something (and is needing to stay in, all 4 of his speicalists are now agreeing as well on that), we were on fluconizole for the last year but liver was showing some stress on the last blood work so we switched to nystatine. realizing nystatin was strep based. (body posturing that had suddenly showed up now gone with pulling it, so it must have been from this script TRIGGERING a flare) we took him off of that and are now pulsing fluconizole instead. we have dropped the 2 other anitbiotics after lyme testing that showed more speicific band information on what the best treatement would be for him (no suprize but his strep coinfection was as HIGH as it could go!!! helllo there is our PANDAS) so we upped to the 200 mgs of azithro daily now as well! so here are our great changes we are seeing we are seeing a new level of emotional connection to what is going on around him and with people around him asking TONS of quesitons on how people are feeling, what they are "up to" and can he play to, play skills jetting, pretend play hitting a whole new level with pretend voices IN play (like a mans voice when the dad or playing a girl and using a high voice ect). a new higher level of wanting and SEEKING to play and interact with siblings and school kids, (saw him hug a friend on the way out of school yesterday instead of just walking by them) talking to the place we are asking him to quiet down!! (hehe) he is playing with new things and getting creative in what he is doing, making up things, or combinding toys to do new things instead of wanting to play the WII for an hour, or just watch TV, his modivation for rewards is back at a higher level then ever. he is trying to help around the house all the sudden, help his sisters, cleaning with out me asking him to, going to bed on his own and getting up to go to the bathroom at night with out me waking him and being dry all night!! (I have had to wake him at 11 PM for years!) LOVING IT!!!! wasn't expecting this with lyme treatment AND we are out of about half our suppliments, so excited to see what happens when everything is back in! been able to DROP the b12 altogether, not seeing any lost gains with dropping glutamine, selenium, evening prime rose oil, CLO, glutathione, biofilm enzymes (however ordering this one again) carnintine, acytl carnintine, caprilic acid, yeast aid, nystatine, probiotic, st johns wort, and flucoizole every other day, ect....can't believe we are doing better and more so on less!!!! he is eating less (more approprete amounts of food for a child his age now while GAINING weight FINALLY) rules have been easier for him to follow as well, and he has a new level of flexability as well. trying new foods with out much work or even asking him to do so, he is looking at it saying oh that looks interesting, picking it up and trying it. been along time since he has been wanting to do that!! he is doing shots for allergies and not fighting it, and just lining up for it! infact ASKING me when we are going to do it. (really think this is helping as well) his is waking up happy now instead of grochy, the expectation aren't needing to be said anymore, he knows its supper time, so he needs to set the table, after words to go get ready for bed on his own, clean his room and pick out a movie! he is starting for the first time to ACT like the oldest child verses my middle having to pick up that role. honestly never thought we would see the day so all this to ENCOURAGE those espeically those with PANDAS diagnosis, to look into lyme. it was a thing years ago that was hot to talk about on chelatingkids2 and I blew it off for years thinking, well tha can't be us! we never had a tic bite or round rash ect....irronically when starting treatment he broke OUT in the lyme rash for 2 weeks!!! I have been dxed with lyme now by this same speicalist as well as my youngest daughter. I had done missions work years ago in Czech Republic and got bit by 11-12 tics pulling them off for weeks, ended up very ill and hospitalized for 2 weeks over there. my health went ever farther down hill. years later dxed with fibro and accepted it was what it was. our Lyme dr gave me a questionare on symptoms and I was FLOORED to see I could check off more then 3/4 of them being years worth of medical issues dr's had researched and couldn't connect ect....I had my "lyme" exposure 6 months before I got pregant with my son, and he was infected in vitro from me. as was my last daughter. my middle was the one I was SOOOOO careful with food wise but did end up living in the hospital for 2 months on IV and feeding tube, not sure why she was spared all the medical junk but she is getting checked for Hyper IGG this week due to her tests coming back so weird. (she is growing normal, great stools, no suppliments needed, and great on paper loosing about 18 allergies IGE this year alone yet her IGG looks like one of the worst I have seen out of hundreds of families I have helped over the years) so all 3 would then have a dx of hypo or hyper immuno defiency. (on one level or another) my third child just started lyme treatment a few weeks back and day 5 had the same MAJOR Herks reaction I had (I couldn't even walk for 36 hours) and she broke out in the bullseye rash as well. she is NT but also a PANDAS child. this dr has shown me the connection between the 2 things and I HIGHLY HIGHLY encourage those with the dx to find a LIA LYme in autism dr ASAP and get the testing done. having a regular western blots is NOT the same type test they do. just like a regular OATS from your dr won't cut it for autism findings. I am free of fibro symptoms now myself and have energy and I feel about a decade younger in just a months time!!!! ( I am on fluconizole, nystatine, probiotic, coq10, and a fish oil that is enhansed) I have had MASSIVE die off, and the only other thing I ever saw give this kind of result in me was HBOT but it only lasted as long as I was treating!!! praying that after a few years of treatments for lyme I can be free of all the health stuff that plagued me for so long!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2011 Report Share Posted February 16, 2011 WOW Christel, that's GREAT!! I never knew all this about your family -- no wonder you like the resident expert here! Congrats, it must feel like you just won a marathon! ROCK ON! (and thanks for all that you contribute! You've helped me a great deal.) laura > > haven't done one of these in a long time as he has been recovered and we have been in stand still dealing with PANDAS as our last issue health wise. > > we had redone a lot of our test just a few months ago on all our kids and levis IGG came back BEAUTIFUL!!! no real issues or foods to remove!! yeah and some new ones that we had challenged came back clean so adding in MORE foods that get to stay!! yeah happy dance. we have now over the years been able to add in over 35 foods both IGE and IGG issues before!!! that with healing his body his body can now tollerate! and not just on labs but challenged on and RETESTED as safe! > > his OATS came back showing we have some clostrida that is back and some yeast (he is on prophatic antibiotics, 3 of them ALL the time with him having PANDAS) so not to big a suprize and honestly not as high as I would expect. > > we had seen a huge regression a few weeks back when my son was re exposed to strep, (funny I said one day we are flaring this is a mess to the NEXT day getting a call from school saying a kid called in sick with strep that NEXT DAY- this is the 6th time we have seen this exact pattern with the schools and flares) tring to go off of clymindamyacin which apparently was addressing something (and is needing to stay in, all 4 of his speicalists are now agreeing as well on that), we were on fluconizole for the last year but liver was showing some stress on the last blood work so we switched to nystatine. realizing nystatin was strep based. (body posturing that had suddenly showed up now gone with pulling it, so it must have been from this script TRIGGERING a flare) we took him off of that and are now pulsing fluconizole instead. we have dropped the 2 other anitbiotics after lyme testing that showed more speicific band information on what the best treatement would be for him (no suprize but his strep coinfection was as HIGH as it could go!!! helllo there is our PANDAS) so we upped to the 200 mgs of azithro daily now as well! > > so here are our great changes we are seeing we are seeing a new level of emotional connection to what is going on around him and with people around him asking TONS of quesitons on how people are feeling, what they are " up to " and can he play to, play skills jetting, pretend play hitting a whole new level with pretend voices IN play (like a mans voice when the dad or playing a girl and using a high voice ect). a new higher level of wanting and SEEKING to play and interact with siblings and school kids, (saw him hug a friend on the way out of school yesterday instead of just walking by them) talking to the place we are asking him to quiet down!! (hehe) he is playing with new things and getting creative in what he is doing, making up things, or combinding toys to do new things instead of wanting to play the WII for an hour, or just watch TV, his modivation for rewards is back at a higher level then ever. he is trying to help around the house all the sudden, help his sisters, cleaning with out me asking him to, going to bed on his own and getting up to go to the bathroom at night with out me waking him and being dry all night!! (I have had to wake him at 11 PM for years!) LOVING IT!!!! wasn't expecting this with lyme treatment AND we are out of about half our suppliments, so excited to see what happens when everything is back in! been able to DROP the b12 altogether, not seeing any lost gains with dropping glutamine, selenium, evening prime rose oil, CLO, glutathione, biofilm enzymes (however ordering this one again) carnintine, acytl carnintine, caprilic acid, yeast aid, nystatine, probiotic, st johns wort, and flucoizole every other day, ect....can't believe we are doing better and more so on less!!!! he is eating less (more approprete amounts of food for a child his age now while GAINING weight FINALLY) > > > > rules have been easier for him to follow as well, and he has a new level of flexability as well. trying new foods with out much work or even asking him to do so, he is looking at it saying oh that looks interesting, picking it up and trying it. been along time since he has been wanting to do that!! he is doing shots for allergies and not fighting it, and just lining up for it! infact ASKING me when we are going to do it. (really think this is helping as well) his is waking up happy now instead of grochy, the expectation aren't needing to be said anymore, he knows its supper time, so he needs to set the table, after words to go get ready for bed on his own, clean his room and pick out a movie! he is starting for the first time to ACT like the oldest child verses my middle having to pick up that role. honestly never thought we would see the day > > so all this to ENCOURAGE those espeically those with PANDAS diagnosis, to look into lyme. it was a thing years ago that was hot to talk about on chelatingkids2 and I blew it off for years thinking, well tha can't be us! we never had a tic bite or round rash ect....irronically when starting treatment he broke OUT in the lyme rash for 2 weeks!!! I have been dxed with lyme now by this same speicalist as well as my youngest daughter. I had done missions work years ago in Czech Republic and got bit by 11-12 tics pulling them off for weeks, ended up very ill and hospitalized for 2 weeks over there. my health went ever farther down hill. years later dxed with fibro and accepted it was what it was. our Lyme dr gave me a questionare on symptoms and I was FLOORED to see I could check off more then 3/4 of them being years worth of medical issues dr's had researched and couldn't connect ect....I had my " lyme " exposure 6 months before I got pregant with my son, and he was infected in vitro from me. as was my last daughter. my middle was the one I was SOOOOO careful with food wise but did end up living in the hospital for 2 months on IV and feeding tube, not sure why she was spared all the medical junk but she is getting checked for Hyper IGG this week due to her tests coming back so weird. (she is growing normal, great stools, no suppliments needed, and great on paper loosing about 18 allergies IGE this year alone yet her IGG looks like one of the worst I have seen out of hundreds of families I have helped over the years) so all 3 would then have a dx of hypo or hyper immuno defiency. (on one level or another) my third child just started lyme treatment a few weeks back and day 5 had the same MAJOR Herks reaction I had (I couldn't even walk for 36 hours) and she broke out in the bullseye rash as well. she is NT but also a PANDAS child. this dr has shown me the connection between the 2 things and I HIGHLY HIGHLY encourage those with the dx to find a LIA LYme in autism dr ASAP and get the testing done. having a regular western blots is NOT the same type test they do. just like a regular OATS from your dr won't cut it for autism findings. I am free of fibro symptoms now myself and have energy and I feel about a decade younger in just a months time!!!! ( I am on fluconizole, nystatine, probiotic, coq10, and a fish oil that is enhansed) I have had MASSIVE die off, and the only other thing I ever saw give this kind of result in me was HBOT but it only lasted as long as I was treating!!! > > praying that after a few years of treatments for lyme I can be free of all the health stuff that plagued me for so long!!! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2011 Report Share Posted February 16, 2011 Hi Christel, Awesome post! I certainly hope to be where you are with my kid one day. Got a question, what kind of doctor and what kind of test did you mean when you said " I HIGHLY HIGHLY encourage those with the dx to find a LIA LYme in autism dr ASAP and get the testing done. " ? Thanks, Soraya I HIGHLY HIGHLY encourage those with the dx to find a LIA LYme in autism dr ASAP and get the testing done Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2011 Report Share Posted February 16, 2011 That is wonderful christel! Did I read correctly that Nystatin is strep based. Do you mind sharing that info with me cause my son reacts to strep strands. Also, I have a question for you as a recovered parent, how did you know he was recovered? Like what were your sure fire answers that it was over. Was your son cognitively all there at recovery or did you still have to teach him what he missed out on. I have read so many recoveries and their are various definitions. My son is so close but he seems delayed but his cognition is not where it is supposed to be. He has ADHD behaviors and recently tics. He is social and had no repetitive behaviors, or stims, but dosnt have the cognition of a child his age which is the clue that something is off to strangers but they never suspect autism. He has recently started with some face grimacing and teeth clicking, though. I am looking for any advice to find the missing pieces and your story is helpful. Any advice is greatly appreciated. Selena > > > > haven't done one of these in a long time as he has been recovered and we have been in stand still dealing with PANDAS as our last issue health wise. > > > > we had redone a lot of our test just a few months ago on all our kids and levis IGG came back BEAUTIFUL!!! no real issues or foods to remove!! yeah and some new ones that we had challenged came back clean so adding in MORE foods that get to stay!! yeah happy dance. we have now over the years been able to add in over 35 foods both IGE and IGG issues before!!! that with healing his body his body can now tollerate! and not just on labs but challenged on and RETESTED as safe! > > > > his OATS came back showing we have some clostrida that is back and some yeast (he is on prophatic antibiotics, 3 of them ALL the time with him having PANDAS) so not to big a suprize and honestly not as high as I would expect. > > > > we had seen a huge regression a few weeks back when my son was re exposed to strep, (funny I said one day we are flaring this is a mess to the NEXT day getting a call from school saying a kid called in sick with strep that NEXT DAY- this is the 6th time we have seen this exact pattern with the schools and flares) tring to go off of clymindamyacin which apparently was addressing something (and is needing to stay in, all 4 of his speicalists are now agreeing as well on that), we were on fluconizole for the last year but liver was showing some stress on the last blood work so we switched to nystatine. realizing nystatin was strep based. (body posturing that had suddenly showed up now gone with pulling it, so it must have been from this script TRIGGERING a flare) we took him off of that and are now pulsing fluconizole instead. we have dropped the 2 other anitbiotics after lyme testing that showed more speicific band information on what the best treatement would be for him (no suprize but his strep coinfection was as HIGH as it could go!!! helllo there is our PANDAS) so we upped to the 200 mgs of azithro daily now as well! > > > > so here are our great changes we are seeing we are seeing a new level of emotional connection to what is going on around him and with people around him asking TONS of quesitons on how people are feeling, what they are " up to " and can he play to, play skills jetting, pretend play hitting a whole new level with pretend voices IN play (like a mans voice when the dad or playing a girl and using a high voice ect). a new higher level of wanting and SEEKING to play and interact with siblings and school kids, (saw him hug a friend on the way out of school yesterday instead of just walking by them) talking to the place we are asking him to quiet down!! (hehe) he is playing with new things and getting creative in what he is doing, making up things, or combinding toys to do new things instead of wanting to play the WII for an hour, or just watch TV, his modivation for rewards is back at a higher level then ever. he is trying to help around the house all the sudden, help his sisters, cleaning with out me asking him to, going to bed on his own and getting up to go to the bathroom at night with out me waking him and being dry all night!! (I have had to wake him at 11 PM for years!) LOVING IT!!!! wasn't expecting this with lyme treatment AND we are out of about half our suppliments, so excited to see what happens when everything is back in! been able to DROP the b12 altogether, not seeing any lost gains with dropping glutamine, selenium, evening prime rose oil, CLO, glutathione, biofilm enzymes (however ordering this one again) carnintine, acytl carnintine, caprilic acid, yeast aid, nystatine, probiotic, st johns wort, and flucoizole every other day, ect....can't believe we are doing better and more so on less!!!! he is eating less (more approprete amounts of food for a child his age now while GAINING weight FINALLY) > > > > > > > > rules have been easier for him to follow as well, and he has a new level of flexability as well. trying new foods with out much work or even asking him to do so, he is looking at it saying oh that looks interesting, picking it up and trying it. been along time since he has been wanting to do that!! he is doing shots for allergies and not fighting it, and just lining up for it! infact ASKING me when we are going to do it. (really think this is helping as well) his is waking up happy now instead of grochy, the expectation aren't needing to be said anymore, he knows its supper time, so he needs to set the table, after words to go get ready for bed on his own, clean his room and pick out a movie! he is starting for the first time to ACT like the oldest child verses my middle having to pick up that role. honestly never thought we would see the day > > > > so all this to ENCOURAGE those espeically those with PANDAS diagnosis, to look into lyme. it was a thing years ago that was hot to talk about on chelatingkids2 and I blew it off for years thinking, well tha can't be us! we never had a tic bite or round rash ect....irronically when starting treatment he broke OUT in the lyme rash for 2 weeks!!! I have been dxed with lyme now by this same speicalist as well as my youngest daughter. I had done missions work years ago in Czech Republic and got bit by 11-12 tics pulling them off for weeks, ended up very ill and hospitalized for 2 weeks over there. my health went ever farther down hill. years later dxed with fibro and accepted it was what it was. our Lyme dr gave me a questionare on symptoms and I was FLOORED to see I could check off more then 3/4 of them being years worth of medical issues dr's had researched and couldn't connect ect....I had my " lyme " exposure 6 months before I got pregant with my son, and he was infected in vitro from me. as was my last daughter. my middle was the one I was SOOOOO careful with food wise but did end up living in the hospital for 2 months on IV and feeding tube, not sure why she was spared all the medical junk but she is getting checked for Hyper IGG this week due to her tests coming back so weird. (she is growing normal, great stools, no suppliments needed, and great on paper loosing about 18 allergies IGE this year alone yet her IGG looks like one of the worst I have seen out of hundreds of families I have helped over the years) so all 3 would then have a dx of hypo or hyper immuno defiency. (on one level or another) my third child just started lyme treatment a few weeks back and day 5 had the same MAJOR Herks reaction I had (I couldn't even walk for 36 hours) and she broke out in the bullseye rash as well. she is NT but also a PANDAS child. this dr has shown me the connection between the 2 things and I HIGHLY HIGHLY encourage those with the dx to find a LIA LYme in autism dr ASAP and get the testing done. having a regular western blots is NOT the same type test they do. just like a regular OATS from your dr won't cut it for autism findings. I am free of fibro symptoms now myself and have energy and I feel about a decade younger in just a months time!!!! ( I am on fluconizole, nystatine, probiotic, coq10, and a fish oil that is enhansed) I have had MASSIVE die off, and the only other thing I ever saw give this kind of result in me was HBOT but it only lasted as long as I was treating!!! > > > > praying that after a few years of treatments for lyme I can be free of all the health stuff that plagued me for so long!!! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2011 Report Share Posted February 16, 2011 a LIA (lyme in autism speicalist) also called a LLMD (lyme literate medical dr.) they test a bit different using 2 specific labs. they may even give antibiotics for 2 weeks so they can see what can be provicated to show band wise (they have bands of IGG and IGM that show or dx you as having lyme) it tells you what co infections you have going on in the body much like a titer test would do for say a virus. then you can more accuratly pin point what meds are best effective in treating. From: Soraya s Sent: Wednesday, February 16, 2011 8:29 PM To: mb12 valtrex Cc: <GFCFKids > ; <AutismSupportDaily > ; <pandas_autism > Subject: Re: update on levi Hi Christel, Awesome post! I certainly hope to be where you are with my kid one day. Got a question, what kind of doctor and what kind of test did you mean when you said "I HIGHLY HIGHLY encourage those with the dx to find a LIA LYme in autism dr ASAP and get the testing done."? Thanks, Soraya I HIGHLY HIGHLY encourage those with the dx to find a LIA LYme in autism dr ASAP and get the testing done Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2011 Report Share Posted February 16, 2011 states are required to retest every 3 years to put someone "on" the spectrum and dx where they fall on that scale. we moved to maine in 2004 and had a team that did that, and my son was doing ok yet was full blown ASD at that point (had JUST started talking again thanks to biomedical- back in my newby days) 3 years AFTER that in 2007 that SAME team came together to reeval my son, vidoe tape the whole thing, rest his levels of understanding and the scale testing for autism and he was on the teeter totter point of 1 point either way (if choosing to), either PDD-NOS or nothing. they basicaly left us with the call saying it could be either one because he was right on the line. he didn't qualify any more under PDD but they understood if we still wanted the services due to the PANDAS throwing him backwards, (and they were evaling him in a non PANDAS flare) but had notes from teachers, therapist ect the changes that would happen when he flared and the regression in skills that would suddenly come on till the right treatement was in place making it hard for school staff ect. the beauty was that the woman who had seen him so sever just getting lang started 3 years back sat sobbing saying she had HEARD that kids could recover but had never met one. she said she even had reviewed his old vidoes from last testing. she was floored. she said she was honored to be the one to see BOTH before and after and it had greatly effected her, asked what we had done and proudly shook our hand and the whole room clapped for us. my husband couldn't make it he was on speaker phone and you could hear him sobbing hearing that he no longer qualified for even PDD. it was A LOT of hard work, A LOT Of money, but worth it!!! the news did a big piece on him and his recovery showing before and after footage of him and his melt downs ect that april and it can be found on youtube. my son is in grade level with peers in a regular school. he is behind this year as last year he had 8 PANDAS flares and it really messed with his education loosing math skills each time and having to relearn and we had to change our protical in how to prevent any more flare. (before this he was 2 years ahead of his peers) and when we moved here he had a tramatic event and we had to pull him out of school for 6 weeks. (he was at peer level in EVERYTHING before that point and functioning with out any support for almost all his day and had dropped OT) he is on grade level In most all areas except I believe 2 right now, and he is a year behind in those areas (irronically the ones that PANDAS effects) he has an aid for those programs and for his allergies (he still seizers with gluten even airborn) his safty awareness I would say is behind what I think it should be. for example at home he will see a chip on the floor pick it up and eat it. not sure how that compairs to other 9 year old boys (perhaps someone can share that with me, as he is my only boy. hehe) but he is on the compulsive side! but since the lyme treatment that has been so much better as well. not sure if it's because it's addressing the strep more effectively or the biofilm and we are loosing (other) area ect. for example he will typically wait for me to not see the kitchen and steal a pear and I will come into a half eaten pear on the table when he KNOWS the rule is no food with out asking.....the last few days back in the swing of the new meds, he is ASKING, and when told NO, not melting down or disobeying, he will grunt his disapproval and go on. to my amazment I come up to a clean table and ask if he had one, and he says no you said no, I am having self control and working on good choices mom! he has a girlfriend (has for 4 years now) NT and they write on the computer and through letters and he is so excited to go see her this next weekend. he has bought her a necklace, a teddy bear and chocolates (not gfcf) with his own money for valentines day, and she talks him up to all her friends. it's cute! so the social pieces IS there as well. as for the nystatine I didn't realize it either till someone mentioned it on here a few weeks back and I was trying to figure out a new posturing body thing we hadn't seen in 5 years had suddenly come on. they mentioned it and I googled nystatine and sure enough. so I talked to my dr about my concerns and pulled it knowing we have the same issues with PROBIOTICS with strep. and sure enough the body posturing was gone!!! I would try and drop the nystatine if you are on it, to see if it is causing a flare. (we upped the naturals when doing that) but a lot of what you discribe sounds like PANDAS, the tics, noices and crimacies....may also be seizers so I wouldn't rule that out yet either From: red18 Sent: Wednesday, February 16, 2011 8:33 PM To: mb12 valtrex Subject: Re: update on levi That is wonderful christel! Did I read correctly that Nystatin is strep based. Do you mind sharing that info with me cause my son reacts to strep strands.Also, I have a question for you as a recovered parent, how did you know he was recovered? Like what were your sure fire answers that it was over. Was your son cognitively all there at recovery or did you still have to teach him what he missed out on. I have read so many recoveries and their are various definitions. My son is so close but he seems delayed but his cognition is not where it is supposed to be. He has ADHD behaviors and recently tics. He is social and had no repetitive behaviors, or stims, but dosnt have the cognition of a child his age which is the clue that something is off to strangers but they never suspect autism. He has recently started with some face grimacing and teeth clicking, though. I am looking for any advice to find the missing pieces and your story is helpful. Any advice is greatly appreciated.Selena> >> > haven't done one of these in a long time as he has been recovered and we have been in stand still dealing with PANDAS as our last issue health wise.> > > > we had redone a lot of our test just a few months ago on all our kids and levis IGG came back BEAUTIFUL!!! no real issues or foods to remove!! yeah and some new ones that we had challenged came back clean so adding in MORE foods that get to stay!! yeah happy dance. we have now over the years been able to add in over 35 foods both IGE and IGG issues before!!! that with healing his body his body can now tollerate! and not just on labs but challenged on and RETESTED as safe!> > > > his OATS came back showing we have some clostrida that is back and some yeast (he is on prophatic antibiotics, 3 of them ALL the time with him having PANDAS) so not to big a suprize and honestly not as high as I would expect. > > > > we had seen a huge regression a few weeks back when my son was re exposed to strep, (funny I said one day we are flaring this is a mess to the NEXT day getting a call from school saying a kid called in sick with strep that NEXT DAY- this is the 6th time we have seen this exact pattern with the schools and flares) tring to go off of clymindamyacin which apparently was addressing something (and is needing to stay in, all 4 of his speicalists are now agreeing as well on that), we were on fluconizole for the last year but liver was showing some stress on the last blood work so we switched to nystatine. realizing nystatin was strep based. (body posturing that had suddenly showed up now gone with pulling it, so it must have been from this script TRIGGERING a flare) we took him off of that and are now pulsing fluconizole instead. we have dropped the 2 other anitbiotics after lyme testing that showed more speicific band information on what the best treatement would be for him (no suprize but his strep coinfection was as HIGH as it could go!!! helllo there is our PANDAS) so we upped to the 200 mgs of azithro daily now as well! > > > > so here are our great changes we are seeing we are seeing a new level of emotional connection to what is going on around him and with people around him asking TONS of quesitons on how people are feeling, what they are "up to" and can he play to, play skills jetting, pretend play hitting a whole new level with pretend voices IN play (like a mans voice when the dad or playing a girl and using a high voice ect). a new higher level of wanting and SEEKING to play and interact with siblings and school kids, (saw him hug a friend on the way out of school yesterday instead of just walking by them) talking to the place we are asking him to quiet down!! (hehe) he is playing with new things and getting creative in what he is doing, making up things, or combinding toys to do new things instead of wanting to play the WII for an hour, or just watch TV, his modivation for rewards is back at a higher level then ever. he is trying to help around the house all the sudden, help his sisters, cleaning with out me asking him to, going to bed on his own and getting up to go to the bathroom at night with out me waking him and being dry all night!! (I have had to wake him at 11 PM for years!) LOVING IT!!!! wasn't expecting this with lyme treatment AND we are out of about half our suppliments, so excited to see what happens when everything is back in! been able to DROP the b12 altogether, not seeing any lost gains with dropping glutamine, selenium, evening prime rose oil, CLO, glutathione, biofilm enzymes (however ordering this one again) carnintine, acytl carnintine, caprilic acid, yeast aid, nystatine, probiotic, st johns wort, and flucoizole every other day, ect....can't believe we are doing better and more so on less!!!! he is eating less (more approprete amounts of food for a child his age now while GAINING weight FINALLY)> > > > > > > > rules have been easier for him to follow as well, and he has a new level of flexability as well. trying new foods with out much work or even asking him to do so, he is looking at it saying oh that looks interesting, picking it up and trying it. been along time since he has been wanting to do that!! he is doing shots for allergies and not fighting it, and just lining up for it! infact ASKING me when we are going to do it. (really think this is helping as well) his is waking up happy now instead of grochy, the expectation aren't needing to be said anymore, he knows its supper time, so he needs to set the table, after words to go get ready for bed on his own, clean his room and pick out a movie! he is starting for the first time to ACT like the oldest child verses my middle having to pick up that role. honestly never thought we would see the day> > > > so all this to ENCOURAGE those espeically those with PANDAS diagnosis, to look into lyme. it was a thing years ago that was hot to talk about on chelatingkids2 and I blew it off for years thinking, well tha can't be us! we never had a tic bite or round rash ect....irronically when starting treatment he broke OUT in the lyme rash for 2 weeks!!! I have been dxed with lyme now by this same speicalist as well as my youngest daughter. I had done missions work years ago in Czech Republic and got bit by 11-12 tics pulling them off for weeks, ended up very ill and hospitalized for 2 weeks over there. my health went ever farther down hill. years later dxed with fibro and accepted it was what it was. our Lyme dr gave me a questionare on symptoms and I was FLOORED to see I could check off more then 3/4 of them being years worth of medical issues dr's had researched and couldn't connect ect....I had my "lyme" exposure 6 months before I got pregant with my son, and he was infected in vitro from me. as was my last daughter. my middle was the one I was SOOOOO careful with food wise but did end up living in the hospital for 2 months on IV and feeding tube, not sure why she was spared all the medical junk but she is getting checked for Hyper IGG this week due to her tests coming back so weird. (she is growing normal, great stools, no suppliments needed, and great on paper loosing about 18 allergies IGE this year alone yet her IGG looks like one of the worst I have seen out of hundreds of families I have helped over the years) so all 3 would then have a dx of hypo or hyper immuno defiency. (on one level or another) my third child just started lyme treatment a few weeks back and day 5 had the same MAJOR Herks reaction I had (I couldn't even walk for 36 hours) and she broke out in the bullseye rash as well. she is NT but also a PANDAS child. this dr has shown me the connection between the 2 things and I HIGHLY HIGHLY encourage those with the dx to find a LIA LYme in autism dr ASAP and get the testing done. having a regular western blots is NOT the same type test they do. just like a regular OATS from your dr won't cut it for autism findings. I am free of fibro symptoms now myself and have energy and I feel about a decade younger in just a months time!!!! ( I am on fluconizole, nystatine, probiotic, coq10, and a fish oil that is enhansed) I have had MASSIVE die off, and the only other thing I ever saw give this kind of result in me was HBOT but it only lasted as long as I was treating!!!> > > > praying that after a few years of treatments for lyme I can be free of all the health stuff that plagued me for so long!!!> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2011 Report Share Posted February 16, 2011 Hi Christel- Great update on your son- thanks for sharing. I am curious about what you said about Nystatin being strep based? I have a PANDAS kid and we have successfully been on flucanozole for months, but tried Nystatin once and it was not good. He seemed to go wild on it- and it wasnt die-off. what did you find about the nystatin? denise > > haven't done one of these in a long time as he has been recovered and we have been in stand still dealing with PANDAS as our last issue health wise. > > we had redone a lot of our test just a few months ago on all our kids and levis IGG came back BEAUTIFUL!!! no real issues or foods to remove!! yeah and some new ones that we had challenged came back clean so adding in MORE foods that get to stay!! yeah happy dance. we have now over the years been able to add in over 35 foods both IGE and IGG issues before!!! that with healing his body his body can now tollerate! and not just on labs but challenged on and RETESTED as safe! > > his OATS came back showing we have some clostrida that is back and some yeast (he is on prophatic antibiotics, 3 of them ALL the time with him having PANDAS) so not to big a suprize and honestly not as high as I would expect. > > we had seen a huge regression a few weeks back when my son was re exposed to strep, (funny I said one day we are flaring this is a mess to the NEXT day getting a call from school saying a kid called in sick with strep that NEXT DAY- this is the 6th time we have seen this exact pattern with the schools and flares) tring to go off of clymindamyacin which apparently was addressing something (and is needing to stay in, all 4 of his speicalists are now agreeing as well on that), we were on fluconizole for the last year but liver was showing some stress on the last blood work so we switched to nystatine. realizing nystatin was strep based. (body posturing that had suddenly showed up now gone with pulling it, so it must have been from this script TRIGGERING a flare) we took him off of that and are now pulsing fluconizole instead. we have dropped the 2 other anitbiotics after lyme testing that showed more speicific band information on what the best treatement would be for him (no suprize but his strep coinfection was as HIGH as it could go!!! helllo there is our PANDAS) so we upped to the 200 mgs of azithro daily now as well! > > so here are our great changes we are seeing we are seeing a new level of emotional connection to what is going on around him and with people around him asking TONS of quesitons on how people are feeling, what they are " up to " and can he play to, play skills jetting, pretend play hitting a whole new level with pretend voices IN play (like a mans voice when the dad or playing a girl and using a high voice ect). a new higher level of wanting and SEEKING to play and interact with siblings and school kids, (saw him hug a friend on the way out of school yesterday instead of just walking by them) talking to the place we are asking him to quiet down!! (hehe) he is playing with new things and getting creative in what he is doing, making up things, or combinding toys to do new things instead of wanting to play the WII for an hour, or just watch TV, his modivation for rewards is back at a higher level then ever. he is trying to help around the house all the sudden, help his sisters, cleaning with out me asking him to, going to bed on his own and getting up to go to the bathroom at night with out me waking him and being dry all night!! (I have had to wake him at 11 PM for years!) LOVING IT!!!! wasn't expecting this with lyme treatment AND we are out of about half our suppliments, so excited to see what happens when everything is back in! been able to DROP the b12 altogether, not seeing any lost gains with dropping glutamine, selenium, evening prime rose oil, CLO, glutathione, biofilm enzymes (however ordering this one again) carnintine, acytl carnintine, caprilic acid, yeast aid, nystatine, probiotic, st johns wort, and flucoizole every other day, ect....can't believe we are doing better and more so on less!!!! he is eating less (more approprete amounts of food for a child his age now while GAINING weight FINALLY) > > > > rules have been easier for him to follow as well, and he has a new level of flexability as well. trying new foods with out much work or even asking him to do so, he is looking at it saying oh that looks interesting, picking it up and trying it. been along time since he has been wanting to do that!! he is doing shots for allergies and not fighting it, and just lining up for it! infact ASKING me when we are going to do it. (really think this is helping as well) his is waking up happy now instead of grochy, the expectation aren't needing to be said anymore, he knows its supper time, so he needs to set the table, after words to go get ready for bed on his own, clean his room and pick out a movie! he is starting for the first time to ACT like the oldest child verses my middle having to pick up that role. honestly never thought we would see the day > > so all this to ENCOURAGE those espeically those with PANDAS diagnosis, to look into lyme. it was a thing years ago that was hot to talk about on chelatingkids2 and I blew it off for years thinking, well tha can't be us! we never had a tic bite or round rash ect....irronically when starting treatment he broke OUT in the lyme rash for 2 weeks!!! I have been dxed with lyme now by this same speicalist as well as my youngest daughter. I had done missions work years ago in Czech Republic and got bit by 11-12 tics pulling them off for weeks, ended up very ill and hospitalized for 2 weeks over there. my health went ever farther down hill. years later dxed with fibro and accepted it was what it was. our Lyme dr gave me a questionare on symptoms and I was FLOORED to see I could check off more then 3/4 of them being years worth of medical issues dr's had researched and couldn't connect ect....I had my " lyme " exposure 6 months before I got pregant with my son, and he was infected in vitro from me. as was my last daughter. my middle was the one I was SOOOOO careful with food wise but did end up living in the hospital for 2 months on IV and feeding tube, not sure why she was spared all the medical junk but she is getting checked for Hyper IGG this week due to her tests coming back so weird. (she is growing normal, great stools, no suppliments needed, and great on paper loosing about 18 allergies IGE this year alone yet her IGG looks like one of the worst I have seen out of hundreds of families I have helped over the years) so all 3 would then have a dx of hypo or hyper immuno defiency. (on one level or another) my third child just started lyme treatment a few weeks back and day 5 had the same MAJOR Herks reaction I had (I couldn't even walk for 36 hours) and she broke out in the bullseye rash as well. she is NT but also a PANDAS child. this dr has shown me the connection between the 2 things and I HIGHLY HIGHLY encourage those with the dx to find a LIA LYme in autism dr ASAP and get the testing done. having a regular western blots is NOT the same type test they do. just like a regular OATS from your dr won't cut it for autism findings. I am free of fibro symptoms now myself and have energy and I feel about a decade younger in just a months time!!!! ( I am on fluconizole, nystatine, probiotic, coq10, and a fish oil that is enhansed) I have had MASSIVE die off, and the only other thing I ever saw give this kind of result in me was HBOT but it only lasted as long as I was treating!!! > > praying that after a few years of treatments for lyme I can be free of all the health stuff that plagued me for so long!!! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2011 Report Share Posted February 16, 2011 that is a strep based bacteria used to fight yeast (still an antifungal however in classification) not concitered an antibiotic. but it was simple to find just putting in google, I was shocked really. we had always tested resistant to nystatine so never tried it with him, but irronic as my NT child has been on it many times and has an over growth of gamma strep in her stool and is ALSO PANDAS> we had just switched her to fluconizol knowing this we will avoid it like the plague From: dmuiter Sent: Wednesday, February 16, 2011 9:05 PM To: mb12 valtrex Subject: Re: update on levi Hi Christel-Great update on your son- thanks for sharing. I am curious about what you said about Nystatin being strep based? I have a PANDAS kid and we have successfully been on flucanozole for months, but tried Nystatin once and it was not good. He seemed to go wild on it- and it wasnt die-off.what did you find about the nystatin?denise>> haven't done one of these in a long time as he has been recovered and we have been in stand still dealing with PANDAS as our last issue health wise.> > we had redone a lot of our test just a few months ago on all our kids and levis IGG came back BEAUTIFUL!!! no real issues or foods to remove!! yeah and some new ones that we had challenged came back clean so adding in MORE foods that get to stay!! yeah happy dance. we have now over the years been able to add in over 35 foods both IGE and IGG issues before!!! that with healing his body his body can now tollerate! and not just on labs but challenged on and RETESTED as safe!> > his OATS came back showing we have some clostrida that is back and some yeast (he is on prophatic antibiotics, 3 of them ALL the time with him having PANDAS) so not to big a suprize and honestly not as high as I would expect. > > we had seen a huge regression a few weeks back when my son was re exposed to strep, (funny I said one day we are flaring this is a mess to the NEXT day getting a call from school saying a kid called in sick with strep that NEXT DAY- this is the 6th time we have seen this exact pattern with the schools and flares) tring to go off of clymindamyacin which apparently was addressing something (and is needing to stay in, all 4 of his speicalists are now agreeing as well on that), we were on fluconizole for the last year but liver was showing some stress on the last blood work so we switched to nystatine. realizing nystatin was strep based. (body posturing that had suddenly showed up now gone with pulling it, so it must have been from this script TRIGGERING a flare) we took him off of that and are now pulsing fluconizole instead. we have dropped the 2 other anitbiotics after lyme testing that showed more speicific band information on what the best treatement would be for him (no suprize but his strep coinfection was as HIGH as it could go!!! helllo there is our PANDAS) so we upped to the 200 mgs of azithro daily now as well! > > so here are our great changes we are seeing we are seeing a new level of emotional connection to what is going on around him and with people around him asking TONS of quesitons on how people are feeling, what they are "up to" and can he play to, play skills jetting, pretend play hitting a whole new level with pretend voices IN play (like a mans voice when the dad or playing a girl and using a high voice ect). a new higher level of wanting and SEEKING to play and interact with siblings and school kids, (saw him hug a friend on the way out of school yesterday instead of just walking by them) talking to the place we are asking him to quiet down!! (hehe) he is playing with new things and getting creative in what he is doing, making up things, or combinding toys to do new things instead of wanting to play the WII for an hour, or just watch TV, his modivation for rewards is back at a higher level then ever. he is trying to help around the house all the sudden, help his sisters, cleaning with out me asking him to, going to bed on his own and getting up to go to the bathroom at night with out me waking him and being dry all night!! (I have had to wake him at 11 PM for years!) LOVING IT!!!! wasn't expecting this with lyme treatment AND we are out of about half our suppliments, so excited to see what happens when everything is back in! been able to DROP the b12 altogether, not seeing any lost gains with dropping glutamine, selenium, evening prime rose oil, CLO, glutathione, biofilm enzymes (however ordering this one again) carnintine, acytl carnintine, caprilic acid, yeast aid, nystatine, probiotic, st johns wort, and flucoizole every other day, ect....can't believe we are doing better and more so on less!!!! he is eating less (more approprete amounts of food for a child his age now while GAINING weight FINALLY)> > > > rules have been easier for him to follow as well, and he has a new level of flexability as well. trying new foods with out much work or even asking him to do so, he is looking at it saying oh that looks interesting, picking it up and trying it. been along time since he has been wanting to do that!! he is doing shots for allergies and not fighting it, and just lining up for it! infact ASKING me when we are going to do it. (really think this is helping as well) his is waking up happy now instead of grochy, the expectation aren't needing to be said anymore, he knows its supper time, so he needs to set the table, after words to go get ready for bed on his own, clean his room and pick out a movie! he is starting for the first time to ACT like the oldest child verses my middle having to pick up that role. honestly never thought we would see the day> > so all this to ENCOURAGE those espeically those with PANDAS diagnosis, to look into lyme. it was a thing years ago that was hot to talk about on chelatingkids2 and I blew it off for years thinking, well tha can't be us! we never had a tic bite or round rash ect....irronically when starting treatment he broke OUT in the lyme rash for 2 weeks!!! I have been dxed with lyme now by this same speicalist as well as my youngest daughter. I had done missions work years ago in Czech Republic and got bit by 11-12 tics pulling them off for weeks, ended up very ill and hospitalized for 2 weeks over there. my health went ever farther down hill. years later dxed with fibro and accepted it was what it was. our Lyme dr gave me a questionare on symptoms and I was FLOORED to see I could check off more then 3/4 of them being years worth of medical issues dr's had researched and couldn't connect ect....I had my "lyme" exposure 6 months before I got pregant with my son, and he was infected in vitro from me. as was my last daughter. my middle was the one I was SOOOOO careful with food wise but did end up living in the hospital for 2 months on IV and feeding tube, not sure why she was spared all the medical junk but she is getting checked for Hyper IGG this week due to her tests coming back so weird. (she is growing normal, great stools, no suppliments needed, and great on paper loosing about 18 allergies IGE this year alone yet her IGG looks like one of the worst I have seen out of hundreds of families I have helped over the years) so all 3 would then have a dx of hypo or hyper immuno defiency. (on one level or another) my third child just started lyme treatment a few weeks back and day 5 had the same MAJOR Herks reaction I had (I couldn't even walk for 36 hours) and she broke out in the bullseye rash as well. she is NT but also a PANDAS child. this dr has shown me the connection between the 2 things and I HIGHLY HIGHLY encourage those with the dx to find a LIA LYme in autism dr ASAP and get the testing done. having a regular western blots is NOT the same type test they do. just like a regular OATS from your dr won't cut it for autism findings. I am free of fibro symptoms now myself and have energy and I feel about a decade younger in just a months time!!!! ( I am on fluconizole, nystatine, probiotic, coq10, and a fish oil that is enhansed) I have had MASSIVE die off, and the only other thing I ever saw give this kind of result in me was HBOT but it only lasted as long as I was treating!!!> > praying that after a few years of treatments for lyme I can be free of all the health stuff that plagued me for so long!!!> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2011 Report Share Posted February 16, 2011 Hi Christal,do you know what works best when they provoke the lyme? Is it 2weeks on antibiotics then wait 2weeks.Or do they test right after the 2weeks of antibiotics. And I wonder which antibiotic and is it a high dose? My family was lucky to have positive tests,and I did not purposely provoke it. Thanks,Tammy F. a LIA (lyme in autism speicalist) also called a LLMD (lyme literate medical dr.) they test a bit different using 2 specific labs. they may even give antibiotics for 2 weeks so they can see what can be provicated to show band wise (they have bands of IGG and IGM that show or dx you as having lyme) it tells you what co infections you have going on in the body much like a titer test would do for say a virus. then you can more accuratly pin point what meds are best effective in treating. From: Soraya s Sent: Wednesday, February 16, 2011 8:29 PM To: mb12 valtrex Cc: <GFCFKids > ; <AutismSupportDaily > ; <pandas_autism > Subject: Re: update on levi Hi Christel, Awesome post! I certainly hope to be where you are with my kid one day. Got a question, what kind of doctor and what kind of test did you mean when you said "I HIGHLY HIGHLY encourage those with the dx to find a LIA LYme in autism dr ASAP and get the testing done."? Thanks, Soraya On Feb 16, 2011, at 11:06 AM, "Christel Church" wrote: I HIGHLY HIGHLY encourage those with the dx to find a LIA LYme in autism dr ASAP and get the testing done Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2011 Report Share Posted February 17, 2011 I think every dr has there own thoughts on that, mine used I believe climindamyacin and my youngest is doing azithromyacin for her test. the provication just provokes it more, so more likely to get more band info I believe, we had done a standard western blot before and it was negitive and we were trying to get the most for our money since the test was out of pocket. From: Tammy Farmer Sent: Wednesday, February 16, 2011 10:41 PM To: mb12 valtrex Subject: Re: update on levi Hi Christal,do you know what works best when they provoke the lyme? Is it 2weeks on antibiotics then wait 2weeks.Or do they test right after the 2weeks of antibiotics. And I wonder which antibiotic and is it a high dose? My family was lucky to have positive tests,and I did not purposely provoke it. Thanks,Tammy F. a LIA (lyme in autism speicalist) also called a LLMD (lyme literate medical dr.) they test a bit different using 2 specific labs. they may even give antibiotics for 2 weeks so they can see what can be provicated to show band wise (they have bands of IGG and IGM that show or dx you as having lyme) it tells you what co infections you have going on in the body much like a titer test would do for say a virus. then you can more accuratly pin point what meds are best effective in treating. From: Soraya s Sent: Wednesday, February 16, 2011 8:29 PM To: mb12 valtrex Cc: <GFCFKids > ; <AutismSupportDaily > ; <pandas_autism > Subject: Re: update on levi Hi Christel, Awesome post! I certainly hope to be where you are with my kid one day. Got a question, what kind of doctor and what kind of test did you mean when you said "I HIGHLY HIGHLY encourage those with the dx to find a LIA LYme in autism dr ASAP and get the testing done."? Thanks, Soraya I HIGHLY HIGHLY encourage those with the dx to find a LIA LYme in autism dr ASAP and get the testing done Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2011 Report Share Posted February 18, 2011 This is SO awesome and encouraging to read. All your hard work and research is worth it. Your kids are so lucky to have you for a mom! > > > I HIGHLY HIGHLY encourage those with the dx to find a LIA LYme in autism dr ASAP and get the testing done > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2011 Report Share Posted February 18, 2011 Christel, How are you dosing the 2 antibiotics? We were pulsing biaxin and it seemed to be breaking down biofilm (?)or bringing things out but not killing them. And then needed other things to kill what was coming out. Thanks. Re: update on levi This is SO awesome and encouraging to read. All your hard work and research is worth it. Your kids are so lucky to have you for a mom! > > > I HIGHLY HIGHLY encourage those with the dx to find a LIA LYme in autism dr ASAP and get the testing done > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2011 Report Share Posted February 18, 2011 to update the update, last night I went upstairs and noticed a light on in the dinning room when I went up angry I noticed my son was sitting at the table by himself doing his math homework I hadn't even bothered to remind him or ask, and it was multipication (not his favoriate) when I asked what he was doing, he cocked his head and said "the right thing mom, my homework," cheesy smile inserted, "and you didn't even ask me or remind me to do it." (so proud of himself) this whole time I thought he was in bed watching a movie! From: sarastratford@... Sent: Friday, February 18, 2011 9:44 AM To: mb12 valtrex Subject: Re: update on levi This is SO awesome and encouraging to read. All your hard work and research is worth it. Your kids are so lucky to have you for a mom!> > > I HIGHLY HIGHLY encourage those with the dx to find a LIA LYme in autism dr ASAP and get the testing done> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2011 Report Share Posted February 18, 2011 we are doing clymindamyacin daily (needed anytime we go off he gets a flare) and then azithro daily as well. the diflucan every other day and it looks like we are getting ready to add in ampatherian B?? (so don’t know how to spell it) and possibly flagy From: w3m1@... Sent: Friday, February 18, 2011 12:22 PM To: mb12 valtrex Subject: Re: Re: update on levi Christel, How are you dosing the 2 antibiotics? We were pulsing biaxin and it seemed to be breaking down biofilm (?)or bringing things out but not killing them. And then needed other things to kill what was coming out. Thanks. Re: update on levi This is SO awesome and encouraging to read. All your hard work and research is worth it. Your kids are so lucky to have you for a mom!> > > I HIGHLY HIGHLY encourage those with the dx to find a LIA LYme in autism dr ASAP and get the testing done> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2011 Report Share Posted February 19, 2011 Thanks Christel. Re: update on levi This is SO awesome and encouraging to read. All your hard work and research is worth it. Your kids are so lucky to have you for a mom! > > > I HIGHLY HIGHLY encourage those with the dx to find a LIA LYme in autism dr ASAP and get the testing done > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2011 Report Share Posted February 19, 2011 Awesome!  to update the update, last night I went upstairs and noticed a light on in the dinning room when I went up angry I noticed my son was sitting at the table by himself doing his math homework I hadn't even bothered to remind him or ask, and it was multipication (not his favoriate) when I asked what he was doing, he cocked his head and said " the right thing mom, my homework, " cheesy smile inserted, " and you didn't even ask me or remind me to do it. " (so proud of himself) this whole time I thought he was in bed watching a movie! From: sarastratford@... Sent: Friday, February 18, 2011 9:44 AM To: mb12 valtrex Subject: Re: update on levi  This is SO awesome and encouraging to read. All your hard work and research is worth it. Your kids are so lucky to have you for a mom!> > > I HIGHLY HIGHLY encourage those with the dx to find a LIA LYme in autism dr ASAP and get the testing done> -- Toni------Mind like a steel trap...Rusty and illegal in 37 states. Quote Link to comment Share on other sites More sharing options...
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