Anti-MAP Therapy: A Pediatric Story

I am the father of two children, ages 10 and 13, who have been diagnosed with Crohn’s disease and are been treated with Anti-MAP therapy. We are lucky to have a private integrative health doctor who has come up to speed with the entire anti MAP protocol. They have both achieved remission. Their remission is marked by normal blood markers including CRP, protein, albumin and iron, as well as strong appetites and good energy. We have not done additional colonoscopies but no doctor would say that these are sick children today. My daughter was on Imuran and as it did nothing, we dropped it, weaned her off prednisone, went straight to Anti-MAP therapy, and never looked back. My daughter is 13 and is growing very quickly.

My son came back MAP positive from Collins’ antibody test and although my daughter came back negative, the testing is notoriously insensitive and thus generates a high degree of false negatives. They both tested MAP positive when we sent their initial biopsies into to John Hermon Taylor’s lab in London using their highly specific reagents. We started them on antibiotics shortly thereafter and we are about 3 years into the protocol right now. Luckily neither of our children had to be hospitalized due to a flare.

Our kids are on the anti-mycobacterial regimens below and they are in full remission with no evidence of disease whatsoever today. Rifabutin was taken at half the daily dose for the initial 10 days (up to 14 days if needed) to monitor potential side effects. All other antibiotics started at full dosing. The antibiotics are taken morning and night and we supplement with probiotics midday. My daughter had uveitis and that is why we switched her from Rifabutin to Rifampicin seamlessly. Once on Rifampicin, the uveitis subsided completely.

My son weighs 58 pounds and takes:

• Rifabutin: 150mg in the a.m and another 150mg in the p.m for a total of 300 mg/day.
• Clarithromycin: 750mg/day
• Clofazimine: 2mg/kg per day, with the total number of pills adjusted weekly based on weight.

My daughter weighs 100 pounds and takes:

• Rifampicin: 150mg in the a.m and another 150mg in the p.m for a total of 300 mg/day.
• Clarithromycin: 250 mg in the a.m. and 500mg in the p.m. for a total of 750 mg/day.
• Clofazimine: 2mg/kg per day, with the total number of pills adjusted weekly based on weight.
• Ciprofloxacin

They both supplement with bromelain to enhance absorption and they each kids had approximately 12 ultraviolet blood irradiation treatments over the course of 18 months.

The most important dietary restriction is that we eat absolutely nothing of bovine origin; so no dairy, red meat or foods containing anything from a cow. My kids eat almost no gluten and very little refined sugar. We like to sweeten with honey, maple syrup or agave and eat organic when it’s available. They take iron and omega 3 supplements as well as calcium. In regard to MAP exposure from water, we primarily drink Eska bottled water as its source is very far removed from any farming activity.