pathfinder Posted September 13, 2011 Report Share Posted September 13, 2011 hello everyone I have questions for you. My son was tested high on ASO titer (IGG not IGM ) about year and half ago at age 16. He had all the classical symptoms of pandas along with high titer so we went after pandas treatment aggresively with some success but some of his physical symptoms that were that of lyme and co so we moved on the that area ( lyme and co treatment is long term with wax and ween type of treatment so cannot declair success as of yet but we are at the right place) I am retabling pandas issue because our lyme dr ran my ds (now 18) ASO titer few weeks ago and it came up high once again. That is total of 4 ASO titers tests in last one and half yr with high as results. They are not teriibly high but high all the same. Beginning of pandas treatment ( HD IVIG+ABX) his ASO titer was 360 and next 3 tests was 300 to 320. Is ASO titer at this range means he had strep sometime in his life and his has antibody for it and he is just a strep carrier? Do we target it to come down to within normal range in order for one to declair victory over pandas? If not, I know mycoplasmas P titer has to come down before one can say he is winning the war why is it different for ASO titer? Can any of you relate success pandas story with lowering ASO titer or success story with high ASO titer? thanks guys Link to comment Share on other sites More sharing options...
beeskneesmommy Posted September 13, 2011 Report Share Posted September 13, 2011 My son had extremely high ASO & Anti-Dnase (450+/900+ consistently), for a year after abx, in conjunction with 8 months post T & A. The doc said that she thought that Strep was getting thru Augmentin and we switched to Cefdinir. It may have been luck in lack of exposure or the cefdinir being more effective, but he had high titers still in 3/11 and by late June they had finally gone down. Coincidentally, we just found + Bart & Lyme a few weeks ago. The Strep titers continue to be close to normal range. Hang in there! Link to comment Share on other sites More sharing options...
eljomom Posted September 13, 2011 Report Share Posted September 13, 2011 beesknees...can you remind me ... did you use Igenex for lyme AND bartonella??? Do you know which panel the co-infections was run? WE have been waiting for a month for our pandas doc to send the orders for the tests. Kits sitting on my counter. Keep calling, e-mailing. I guess b/c my dd is not "debilitated" we are on the back burner. My son had extremely high ASO & Anti-Dnase (450+/900+ consistently), for a year after abx, in conjunction with 8 months post T & A. The doc said that she thought that Strep was getting thru Augmentin and we switched to Cefdinir. It may have been luck in lack of exposure or the cefdinir being more effective, but he had high titers still in 3/11 and by late June they had finally gone down. Coincidentally, we just found + Bart & Lyme a few weeks ago. The Strep titers continue to be close to normal range. Hang in there! Link to comment Share on other sites More sharing options...
pathfinder Posted September 14, 2011 Author Report Share Posted September 14, 2011 My son had extremely high ASO & Anti-Dnase (450+/900+ consistently), for a year after abx, in conjunction with 8 months post T & A. The doc said that she thought that Strep was getting thru Augmentin and we switched to Cefdinir. It may have been luck in lack of exposure or the cefdinir being more effective, but he had high titers still in 3/11 and by late June they had finally gone down. Coincidentally, we just found + Bart & Lyme a few weeks ago. The Strep titers continue to be close to normal range. Hang in there! Thank you Beeskneemommy Would you say lowering ASO titer helped your son in anyway even with L& bartonella in the background? My son also tested positive for bartonella ( probably lyme but definite) along with mycoplasmas. Link to comment Share on other sites More sharing options...
momcap Posted September 14, 2011 Report Share Posted September 14, 2011 Pathfinder - I don't know the answers to your questions, but we have a similar situation. DS7's ASOs have been in the 500s for 1.5 years, despite a year on antibiotics, and a tonsillectomy. We have a baseline of 27 from 2 years ago, so we know he doesn't just run high normally. He tested positive for lyme in July, and is also being treated for bartonella. Still too early in treatment to say anything for sure, but we are seeing some major improvements. OCD went from severe to mild, he is showering, attending school, and his lymph nodes are not swollen for the first time since I can remember. Our LLMD wants to retest his ASO in 2 months, so I'll be interested to see if it finally comes down at all. All 3 of my kids run high ASOs, and 1 is a strep carrier. All 3 positive for lyme. Ugh. Eljomom - I'm pretty sure any type of doctor can sign the IGeneX forms for you. When I got tested I had my naturopath sign the forms. I've also heard of chiropractors signing. You can probably find someone else to do it instead of sitting on the back burner and being ignored. That's not fair! Link to comment Share on other sites More sharing options...
Alex Posted September 14, 2011 Report Share Posted September 14, 2011 My son's ASO titer and ANti-Dnase B are also still elevated after two years on antibiotics. In searching around the web I found a study called 'Effect of tonsillectomy on ASO-titre'. Here is the link to the abstract- http://www.springerlink.com/content/h379182709163650/. I had to purchase the study in order to read it. The gist is that they took 50 kids with elevated ASO titre and a history of sore throats and performed tonsillectomies. After one year, 88% no longer had elevated ASO's. Also, the incidence of strep throat was also way down. Of course if someone gets a tonsillectomy and then is still constantly exposed to strep from some other source, like a family member who is a carrier or has repeat strep throat themselves then it sure seems that the ASO would stay up. Link to comment Share on other sites More sharing options...
Dedee Posted September 14, 2011 Report Share Posted September 14, 2011 My PANDAS son who had a tonsilectomy 4 years ago still has elevated strep titers. We just tested again for the first time since removing them. We tested him 6 months after removing tonsils and his AntiDnAse B was 2,700. My Ped said she had never seen one that high considering he had not had strep in little over 6 months. He has been on antibiotics for 4 years and had no strep since that time. We tested a month ago and tites came back 570. So his new doctor is changing his antibiotic. My son has some residual OCD symptoms related to his eating and we are hoping this may help with that. We will recheck in three months. I think PANDAS kids take a while to clear. Dedee Link to comment Share on other sites More sharing options...
pathfinder Posted September 14, 2011 Author Report Share Posted September 14, 2011 have you stopped TSO then? Just curious. We are still doing TSO He hosted his 10th dose yesterday How are you doing with TSO? Link to comment Share on other sites More sharing options...
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