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DS16 had first flare at age 10 with coxsackie and strep. Sudden/severe onset OCD, behavior changes, anxiety, new onset bedwetting, extreme separation anxiety (school refusal) and all the rest. Treated with 10 days of penicillan. Pediatrician suspected PANDAS and advised this was the only treatment available at that time (2008) In retrospect, there were less severe flares at younger ages with impetigo, sinus infections, etc. One flare included tics which resolved and never returned. Several less severe flares between ages 10-13. Most severe flare to date with myco p and strep at age 14 with sudden onset OCD/Anorexia, anxiety, new onset bedwetting, hospitalized for 2 weeks and now in remission. His treatment so far has been a regular course of antibiotics from pediatrician when an infection has been diagnosed and 4 months of Clarithromycin a year ago for myco p. Currently not on antibiotic. We have an appointment to see Dr. F and Margo T. @ Stanford next week. We are living in fear of another flare due to the fact that the last one was life threatening. What treatments should we consider? Also, positive Lyme test (Advanced Lab) I'm hoping some of you who have received more treatment will weigh in on what we should be looking for treatment wise. DS has returned to close to baseline with each previous flare, but this last flare not so much. There is a much higher level of ocd remaining. This is a high school junior looking toward college. Another flare of that magnitude will alter the course of his life. Thank you for this forum and any advice you can give.

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If you have a positive lab culture for Borrelia from Advanced Laboratory Services, then you have very compelling evidence to be treating for Lyme. Seek the help of a LLMD, and ask the board here for recommendations if you need them. People here are generally happy to help and will PM you with their guidance.

Since your DS may have been struggling with Lyme for 6+ years, you should expect it will take some time to fight the infection and it will take diligence by you and your doctor(s). I would avoid any doctor who thinks a short course of antibiotics will cure Lyme. Rather, we have benefited from a therapy that uses a combination of antibiotics concurrently. There are three forms of Borrelia that are typically targeted during treatment, the spirochete, cell-wall deficient, and cyst forms. Each antibiotic should address treatment one of these forms. Each antibiotic may have a demonstrated effectiveness on killing Borrelia, so the type of antibiotic used is important. The antibiotics may or may not be cycled over time depending on the various treatment approaches for each doctor. Keeping good notes during treatment cycles may help gauge effectiveness of the treatment.

 

Good luck with your next steps, you have a good support network here.

Edited by msimon3
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