Guest guest Posted March 3, 2011 Report Share Posted March 3, 2011 Mason,Rifampin is mainly used for bartonella and it needs to be taken with another abx to prevent resistance. (Levaquin is Burrascano's choice for bartonella, but you can't give it to kids because of possible tendon damage.) As a 6-year-old, my son did 4 months of bactrim/zith/mepron for borrelia/bart/babesia. We *think* the babesia is gone, but lyme and bart remain. Bart is evidently the toughest thing to get rid of. So far, rifampin for us has been very disappointing.Omnicef is for the lyme and as an add-on to rifampin. We asked our LLMD to try it because another one of his little guy patients responded very well to it. It was the "key to unlock his brain," according to the doctor. For us, it's just been another in a long line of get-your-hopes-up-and-then-be-disappointed endeavors. It only has a 25% bioavailability, so in retrospect, I guess it's not surprising that it has done nothing positive for us.I think Rif, Omnicef, and Mepron can be given to 2-year-olds. Caryn has mentioned that her 2-year-old (at the time) either used these abx or considered them.To: borreliamultipleinfectionsandautism Sent: Thu, March 3, 2011 8:14:56 AMSubject: RE: Re: Doxycycline (or anyone), is rifampin and omnicef typically used for older kids with Lyme / Autism? Our son has been on Amoxicillin and azrith, with Grape furit seed extract, probotics, and liquid multivitamin. Does anyone use rif, omnifecf, or any other antibiotics with younder kids (Mine is 3 1/2 right now, been on amoxocillin for alomst a year - we have seen good results with it). Mason To: BorreliaMultipleInfectionsAndAutism From: patrickmandich@...Date: Thu, 3 Mar 2011 03:29:29 -0800Subject: Re: Re: Doxycycline In the past, we tried Valtrex for 3 months for viral issues - nothing. OLE - nothing. GSE - nothing. Through the years, we've tried so many supplement "flavors-of-the-month" without any success. Roxithromycin (an abx from overseas) got him to singing and talking a bit more, but the underlying cognitive issues are still there without any signs of resolving. To: borreliamultipleinfectionsandautism Sent: Thu, March 3, 2011 1:16:15 AMSubject: RE: Re: Doxycycline You know whether he also has viral issues will impact treatment...for myself who suffers with both, abx oral treatment has not been effective although initially yes..however my son does amazing very noticible cognitive benefits on meds..3 1/2 yrs. old To: BorreliaMultipleInfectionsAndAutism From: wantonel@...Date: Thu, 3 Mar 2011 05:13:12 +0000Subject: Re: Doxycycline ,I don't want to scare or discourage you from giving your son further antibiotic treament to improve his health issues, but recently a mother from another group(biomedical one) posted an article of how antibiotics could damage our kids even further .Heidi posted the right link as the one I posted could not be seen.I will try to find it and re-posted it again.Also I think Dr. K. was giving a speech on how to treat lyme and other related illnesses without the use of antibiotics and I wonder if anyone in the group attended the seminar and can give some information about it.Olga>> We're not seeing any improvements for lyme/increased bart on nearly 3 months of > rifampin, omnicef, and zith. Indeed, our son's behaviors have been undeniably > worse, i.e., non-compliance, increased OCD, agression, etc.> > Our guy turns 8 in May, so if this regiment continues to fail, we might ask our > LLMD then to try some Doxy. It's suppose to stain developing teeth, but a year > and a half of so many different abx seem to have ALREADY discolored his bottom > permanent teeth. It would be nice to just catch a glimpse of what he might be if > he hadn't been born with borrelia et al. > > > Has anyone seen any improvements with doxy for older ASD/lyme kids?> > > > P.S. My wife finally saw an adult LLMD for her condition and he believes that we > will not see any major cognitive changes in our son unless we try the IV abx > route. > > > > ________________________________> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2011 Report Share Posted March 3, 2011 Thanks for the encouragement, Heidi. I understand what you're saying about the immune system. Our dog's vet tested positive for bart, but he says he doesn't exhibit any symptoms. I wonder if my son's major cognitive problems stem from a dysfunctional immune system. He tested negative for strep antibodies, but we're still awaiting results (after 3+ months) from Dr. Cunningham's Pandas test. Instead of strep, though, maybe it's the borrelia or bart antibodies attacking his brain. I would like to try the 5-day steroid burst on him to see if his symptoms are autoimmune-related, but I know it's contraindicted for lyme and co. Catch-22, what to do? Meanwhile, I've just added some knotweed and banderol to the mix and will perhaps, try some more cat's claw. Hopefully, something will work before his childhood totally dwindles away.To: BorreliaMultipleInfectionsAndAutism Sent: Thu, March 3, 2011 8:58:48 AMSubject: Re: Doxycycline I can not say much about antibiotics except that it is a strategy. The doctor has to have experience, and you need to communicate with them to learn their plan and what they have seen. They all have different strategies. I have seen lots of varying posts on different antibiotic mixtures that worked, so I can't say what works best. Zithromax definitely appears to be the most common used one, but some say they didn't get results from it. Some doctors will say that treatments need last up to 7 years. I have also seen posts and talked to people personally who have told me that the long-term antibiotics affected their liver and digestion. But, some docs say they have ways to avoid this. I have seen a lot of people prefer IV, which takes a lot of strain off the digestion system. I recently seen a report that possibly penicillin is a great choice because it crosses the Blood Brain Barrier and doesn't wipe out the microflora as much as other antibiotics. What I have learned is that reducing symptoms comes from increasing Th1, digestion, and boosting the immune system to rid intracellular pathogens, increasing circulation, and decreasing inflammation. The symptoms don't come just from Lyme and Bartonella, but also from the immune system working amiss, which is probably how they developed the Lyme and Bartonella chronic infections. There are many who test positive for these who don't have many symptoms and claim they feel healthy. So, realize that the symptoms may come more from the immune dysfunction state. I think with autism, it is best to work with integrated medicine, meaning that those with autism symptoms need more attention for their digestion, inflammation, etc. Definitely, don't feel dismayed because your son is older. I know this journey is longer and more difficult than we think we can handle, but my best advice is to keep learning and eventually, you will get to a good place. Love and prayers, Heidi N We're not seeing any improvements for lyme/increased bart on nearly 3 months of rifampin, omnicef, and zith. Indeed, our son's behaviors have been undeniably worse, i.e., non-compliance, increased OCD, agression, etc. Our guy turns 8 in May, so if this regiment continues to fail, we might ask our LLMD then to try some Doxy. It's suppose to stain developing teeth, but a year and a half of so many different abx seem to have ALREADY discolored his bottom permanent teeth. It would be nice to just catch a glimpse of what he might be if he hadn't been born with borrelia et al. Has anyone seen any improvements with doxy for older ASD/lyme kids? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2011 Report Share Posted March 3, 2011 Thanks ,Our son responded very well to amoxocillin he was talking at age 18 months, then he regressed to no words and horrible tantrums for a year. Then we found out about Lyme and he started talking 10 days after amoxocillin was started. He showed excellent progress for about 8 months then hit a ceiling. We added Azrith. then saw another spike in his progress, then we hit another ceiling and added grape fruit seed extract, saw another spike, now we are at a ceiling again. Part of me wants to say "Be patient, it will be ok" but another part says "Keep finding the next supplement or antimicrobial to get the next spike."We tried Namenda and saw a regression, some people have seen nice results but it didn't work for Tristan. I am just looking for other opinions of what has worked with children. We have a GREAT LLMD who I trust and believe in, but there are so many different therapies out there I am always looking for new ideas.Thanks for all your help and keep the ideas coming if you have any new ones. Mason To: BorreliaMultipleInfectionsAndAutism From: patrickmandich@...Date: Thu, 3 Mar 2011 14:32:32 -0800Subject: Re: Re: Doxycycline Mason,Rifampin is mainly used for bartonella and it needs to be taken with another abx to prevent resistance. (Levaquin is Burrascano's choice for bartonella, but you can't give it to kids because of possible tendon damage.) As a 6-year-old, my son did 4 months of bactrim/zith/mepron for borrelia/bart/babesia. We *think* the babesia is gone, but lyme and bart remain. Bart is evidently the toughest thing to get rid of. So far, rifampin for us has been very disappointing.Omnicef is for the lyme and as an add-on to rifampin. We asked our LLMD to try it because another one of his little guy patients responded very well to it. It was the "key to unlock his brain," according to the doctor. For us, it's just been another in a long line of get-your-hopes-up-and-then-be-disappointed endeavors. It only has a 25% bioavailability, so in retrospect, I guess it's not surprising that it has done nothing positive for us.I think Rif, Omnicef, and Mepron can be given to 2-year-olds. Caryn has mentioned that her 2-year-old (at the time) either used these abx or considered them.To: borreliamultipleinfectionsandautism Sent: Thu, March 3, 2011 8:14:56 AMSubject: RE: Re: Doxycycline (or anyone), is rifampin and omnicef typically used for older kids with Lyme / Autism? Our son has been on Amoxicillin and azrith, with Grape furit seed extract, probotics, and liquid multivitamin. Does anyone use rif, omnifecf, or any other antibiotics with younder kids (Mine is 3 1/2 right now, been on amoxocillin for alomst a year - we have seen good results with it). Mason To: BorreliaMultipleInfectionsAndAutism From: patrickmandich@...Date: Thu, 3 Mar 2011 03:29:29 -0800Subject: Re: Re: Doxycycline In the past, we tried Valtrex for 3 months for viral issues - nothing. OLE - nothing. GSE - nothing. Through the years, we've tried so many supplement "flavors-of-the-month" without any success. Roxithromycin (an abx from overseas) got him to singing and talking a bit more, but the underlying cognitive issues are still there without any signs of resolving. To: borreliamultipleinfectionsandautism Sent: Thu, March 3, 2011 1:16:15 AMSubject: RE: Re: Doxycycline You know whether he also has viral issues will impact treatment...for myself who suffers with both, abx oral treatment has not been effective although initially yes..however my son does amazing very noticible cognitive benefits on meds..3 1/2 yrs. old To: BorreliaMultipleInfectionsAndAutism From: wantonel@...Date: Thu, 3 Mar 2011 05:13:12 +0000Subject: Re: Doxycycline ,I don't want to scare or discourage you from giving your son further antibiotic treament to improve his health issues, but recently a mother from another group(biomedical one) posted an article of how antibiotics could damage our kids even further .Heidi posted the right link as the one I posted could not be seen.I will try to find it and re-posted it again.Also I think Dr. K. was giving a speech on how to treat lyme and other related illnesses without the use of antibiotics and I wonder if anyone in the group attended the seminar and can give some information about it.Olga>> We're not seeing any improvements for lyme/increased bart on nearly 3 months of > rifampin, omnicef, and zith. Indeed, our son's behaviors have been undeniably > worse, i.e., non-compliance, increased OCD, agression, etc.> > Our guy turns 8 in May, so if this regiment continues to fail, we might ask our > LLMD then to try some Doxy. It's suppose to stain developing teeth, but a year > and a half of so many different abx seem to have ALREADY discolored his bottom > permanent teeth. It would be nice to just catch a glimpse of what he might be if > he hadn't been born with borrelia et al. > > > Has anyone seen any improvements with doxy for older ASD/lyme kids?> > > > P.S. My wife finally saw an adult LLMD for her condition and he believes that we > will not see any major cognitive changes in our son unless we try the IV abx > route. > > > > ________________________________> Quote Link to comment Share on other sites More sharing options...
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