Home Forums General Discussion "Venturing Off the Beaten Path Leads Kyle to Remission"

This topic contains 7 replies, has 4 voices, and was last updated by  Suzanne 3 years, 4 months ago.

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  • #308632
    Suzanne
    Participant

    AP success story posted on the Arthritis National Research Foundation site and also tweeted:

    http://www.curearthritis.org/antibiotic-protocol-kyle-remission/

    Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

    #374407
    Calida
    Participant

    Kyle’s story must sound like a miracle to the members of the ANRF! Just another day here at RBF 😀

    The poor child certainly had everything including the kitchen sink thrown at him and job well done on the part of the parents. I love to hear how AP helps children above all remission stories.

    Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
    AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
    Minocycline (Teva generic) 100mg BID November 20, 2014
    Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
    Supplements

    #374408
    Jan Lucinda1
    Participant

    Great story!!

    #374409
    Amelia
    Participant

    Suzanne, thank you so much for sharing Kyle’s article with the Roadback.org! I am Kyle’s mom – our journey has gone from painfully challenging to genuinely optimistic. I am forever grateful to the Roadback, Maz, Cheryl (her daughter has had great success with AP) and all involved in providing testimonials and feedback on the site. I had so many questions early on about the treatment and Roadback was my go-to for answers. With much thanks to Roadback, our boy is back.
    I was thrilled that Arthritis National Research Foundation wrote the article about Kyle and his success with AP. I hope it encourages people to be their own advocate in their health and gives hope.

    #374410
    Suzanne
    Participant

    Amelia, thank you so much for getting his story out! I was killing time and searched #juvenilearthritis on Twitter, and came across it. I hope others who are struggling with their current therapies will be inspired to learn more.

    I’m so glad you posted, because I was wondering which antibiotic put your son in remission. We are still told my daughter is too young for minocycline, and although she lives the life of ‘remission’ on azithromycin, she still has inflammation that says she is not there yet.

    Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

    #374411
    Suzanne
    Participant

    @calida wrote:

    The poor child certainly had everything including the kitchen sink thrown at him

    I had the same thought! Thank goodness they found the right path!!!!

    Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

    #374412
    Amelia
    Participant

    Suzanne –
    Kyle has been on minocyline 100mg MWF since July 2013. We did visit Dr. S in November 2014 because Ky’s pain was increasing. Dr. S did the clindamycin IV, 10 infusions – 2 per day 900mg of clindamycin. After the IV treatment Ky’s pain went back down. We are monitoring his symptoms and will adjust meds as needed (add/lessen). When I say Ky is in remission, I mean he has tested ANA negative since January 2014. He still has a pain but one would never know it. His pain is about a 4/10. Use to be 8/10 before AP protocol.
    I am happy to chat with you anytime – having a child suffer from a chronic illness can be quite lonely.

    #374413
    Suzanne
    Participant

    My daughter has always been ANA neg, so we cannot use that as a marker for her disease activity. Even when her CRP is next to normal, she still has swelling upon exam.

    As far as loneliness, one positive of this otherwise bad experience has been the friends I have made – all over the world – while researching! I will send you a pm.

    Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

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