Our Journey Starting the Mayo Protocol – March 2015

Our Journey Starting the Mayo Protocol – March 2015

We started the Mayo Protocol in March of 2015 immediately upon leaving the Mayo Clinic (actually even while we were still there).  At this point, our son had been sick for 9 months.  We started adding the large amounts of fluid (mostly water) and salt to his daily dietary intake and gradually started some daily exercise. Additionally, he was put on beta-blocker medication (metropolol) & over-the-counter iron supplements to get his ferritin (iron) levels up.  We started his exercise with just walking.  We also put him back in school for 2 classes per day and he held this pattern through the end-of-year.  (In hind sight, we should have pushed him harder to get back to a full day of school more quickly.)  We also raised the head of his bed approximately 4″ for blood circulation training at night.  What was the result?  An almost immediate improvement of many of his symptoms.  The exercise & water intake seemed to be the most important components of the protocol.

Over time and with gradual ramping up of his daily exercise & activities, his stomach pain/nausea decreased, his headaches improved, he was less fatigued (but still tired), his low-grade fever went away, he slept better, his appetite increased (and he started gaining weight), the nodes in his neck became less swollen, and his pallor improved.  After the first couple of weeks or so, we increased his cardio exercise to including interval running/walking & weight training.  In August, he was switched to a vasoconstrictor medication (mitodrine).  His smile and sense of humor returned immediately once he found some relief on the Mayo Protocol.  It was also so helpful to get him back to school for socialization.  It was really isolating and depressing for him to be home alone all day with mom and the tutors.  It was hard on mom too.  :/

Although our son’s symptoms greatly improved, he was far from his “normal” self.  Even with the protocol in place, he still had symptoms that were affecting his ability to function normally.  Exercise intolerance was a big one … if he “overdid” his exercise or activities (or didn’t drink adequate amounts of water), he would still “crash”.  Crashes included low-grade fever, increased fatigue, loss of appetite (and sometimes pain/nausea), & pallor.  These crashes usually lagged the activity by 12-24 hours (usually closer to 24 hours). Over several months, these crashes lessened in severity and length, but were still a part of our lives and limited his “normal” life functionality.

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