thomasmom Posted December 26, 2010 Report Share Posted December 26, 2010 Merry Christmas and Happy New Year to all ! I have 2 questions that I am going to break into two separate posts. We did not have all that great of a Christmas because my one son was throwing up and my other exposed son was ticcing every second....the whole day. Throw in some not so sympathetic relatives and you get the picture. I was really glad when they left. My ds now 10 yesterday (yep Christmas baby) improved on so many of his PANDAS symptoms but is still ticcing despite 2 IVIGs and continuous antibiotics. His tics diminsh very quickly after IVIG but it just doesn't last for a long time. if he gets exposed then bingo back to the tics ! Now that the short lived GI virus is gone, his tics seem better today. So we have come to the conclusion that he either A) has an undetermined infection that the Augmentin just doesn't reach. Althought it doesn't really have to be an infection right ? It can just be an antigen that causes these bad anitbodies to be released. or He just reacts to all the viruses that he comes in contact with on a frequent basis. I am trying to keep him in a normal school. If he has no underlying infection, then I guess we have to put him on a regular IVIG schedule to block all the antibodies. When these good antiboides die off then we have to get some more. ALmost like a PID child. Does anyone else do that ? Don't all of us carry around some bacteria or other anitgens that could be setting off an immune system. These antigens may or may not ever develop into a treatable infection. His strep titers are going down but his Mycoplasma was still slightly elevated but Dr. K still wants to continue on the Augmentin. Does Biaxin treat both strep and Mycoplasm ? Thanks ! Link to comment Share on other sites More sharing options...
sptcmom Posted December 26, 2010 Report Share Posted December 26, 2010 (edited) yes, Biaxin (clarithromycin) is a strong macrolide plus has a great antiinflammatory effect and crosses the blood brain barrier. It helped DS far more than Augmentin before and after IVIG with dr K.It definitely helps with mycoplasma and strep control. Dr K's prescribed prophylactic dose was extremely low for our DS I felt, and I switched to a much higher dose. I also did 30 days of Biaxin for eradication of mycoplasma. We were 95% BEFORE IVIG and slipped at 70% after IVIV (HD) with Dr K. I was suspicious and researched further. Tested to rule out Lyme, coinfections, viruses and yeast. Came back positive for Bartonella active, RMSF inactive but prsent, HHV6,and cytomegalovirus plus biofilms with intestinal parasites positive. We started treatment for these and I feel we're on our path to healing finally. Lots of ups and downs but its a long haul I know.We are currently battling a bad cold. Merry Christmas to you too! There is light at the end of the tunnel Im sure. We just need to figure out all the microbes hiding in these little bodies. Edited December 26, 2010 by sptcmom Link to comment Share on other sites More sharing options...
Fixit Posted December 26, 2010 Report Share Posted December 26, 2010 i am interested in others reply as well..we have not done ivig....but what i've read and seem to gather..not sure if this answers you exactly 1...now that the infection has passed...he may continue to get better on abx and ivig may still have some influence..it just may take a while. 2...some people are doing another ivig if they cant get back to baseline...and there are several theories and protocals..... and one is that some kids need monthly for 1 1/2 years....amd then wait and see some 4 in a row, 2 months apart some may need it every 6 months till adult hood....(this sounds more likely to me from parents telling of healing and relapseing)...maybe they need 3 in a row and then every six months some only need one and are done..... this is still a work in progress....and i hope all the docs continue their different protocals as i don't think it will ever be one size fits all and not sure if you mentioned this....could be lymes...or other of a multitude of viruses,bacteria, paratsies we dont' know about....also ruling out other autoummnne conditions that can create panda systems..chrones, celiacs etc...food sensitivies...blah, blha , blah Link to comment Share on other sites More sharing options...
Fixit Posted December 26, 2010 Report Share Posted December 26, 2010 ps...i'm mom of ticcers...they are known to be very difficult and usually last to go.. spctmom...thanks for posting your reply and the update....very informative Link to comment Share on other sites More sharing options...
mom love Posted December 26, 2010 Report Share Posted December 26, 2010 yes, Biaxin (clarithromycin) is a strong macrolide plus has a great antiinflammatory effect and crosses the blood brain barrier. It helped DS far more than Augmentin before and after IVIG with dr K.It definitely helps with mycoplasma and strep control. Dr K's prescribed prophylactic dose was extremely low for our DS I felt, and I switched to a much higher dose. I also did 30 days of Biaxin for eradication of mycoplasma. We were 95% BEFORE IVIG and slipped at 70% after IVIV (HD) with Dr K. I was suspicious and researched further. Tested to rule out Lyme, coinfections, viruses and yeast. Came back positive for Bartonella active, RMSF inactive but prsent, HHV6,and cytomegalovirus plus biofilms with intestinal parasites positive. We started treatment for these and I feel we're on our path to healing finally. Lots of ups and downs but its a long haul I know.We are currently battling a bad cold. Merry Christmas to you too! There is light at the end of the tunnel Im sure. We just need to figure out all the microbes hiding in these little bodies. sptcmom, did you go through a llmd for all that testing? Who is treating your child now? a llmd? Thomasmom, we have a tic that has not gone away for 4 months now. Previous ones have disappeared either with abx or with time. I have to figure out what else is going on like you. This is very complicated. What is released in the brain when a person is excited or anxious? Her tic certainly gets worse at those times as well sometimes. Link to comment Share on other sites More sharing options...
sptcmom Posted December 26, 2010 Report Share Posted December 26, 2010 Mom love Yes, we are being treated by an LLMD, actually two LLMDs and one Klinghardt trained Chiropracter. As Fixit says so accurately who the heck knows what is brewing as far as infections go.It could be viruses, bacteria, yeast, parasites blah blah...ad nauseum. The key is to spread the net wide, test for everything before any major procedures, steroids etc . Just my humble opinion. We did IVIG in a hurry and it was a mistake- too early in the game. I feel if I had waited and workd on the all the infections my 30 K would've been a better investment. oh well. I didn't know then what I know now. DH and I were just trying to help our DS aggressively. DS is mistakenly diagnosed with query/mystery type Asthma and treated for 2 plus years with nebulizer steroids and airway dilators while the whole time all he had was walking pneumonia- mycoplasma pneumoniae was the culprit which we found out in March 2010 and treated. Jodie Link to comment Share on other sites More sharing options...
mom love Posted December 26, 2010 Report Share Posted December 26, 2010 thomasmom, biaxin is good for myco p I believe, and good for some streps, but not all. My dd had an exacerbation while on full strength zithromax (same family as biaxin), pandas doc recommended 3 weeks of augmentin for possible strep exposure, and she did get better, and her strep titers did rise after that so I believe the zithromax was not covering the strep. I do not believe augmentin covers myco p. sptcmom, we were pos for myco p as well at onset of this latest very bad motor tic. Really surprised us. So how is your child doing? Are there tics you are dealing with? How has your treatment changed now with a llmd? How does one get rid of intestinal parasites? How does one get them??? Eating meat??? What has gotten better? Does your insurance cover the llmd? Sorry to bombard you with questions..... Link to comment Share on other sites More sharing options...
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