When I last posted to the site it was January 2008. My daughter Zoe was 12 and had been on the antibiotic protocol (AP) for two years. I am pleased to report that she’s now 19, a freshman in college and still on minocycline to treat her systemic scleroderma.
Zoe took oral minocycline in conjunction with two yearly IV therapy sessions until March 2011. The main reason we discontinued the twice yearly IV therapy was that it became too difficult for our family to make the trips to see Dr. S in Iowa. Since that time, Zoe’s had two infected ulcerations. One in March 2013 resulted in a picc line and four weeks of IV therapy. The other occurred in May 2014 and resulted in a week of IV therapy in the hospital.
In April 2013, Zoe was evaluated at Northwestern University Hospital for a stem cell transplant. We read an article in Good Housekeeping the previous autumn that indicated this might be a successful way to treat systemic scleroderma. Zoe went through extensive testing and was ultimately declined as a candidate. The doctor’s reasoning were two fold: her scleroderma has been dormant for quite a long time and Zoe wasn’t interested in having a stem cell transplant. The process its self is very taxing on the body and the doctors need to know that the patient is “all in.” Zoe wasn’t interested in this route.
In May of this year, Zoe started to see a rheumatologist (another Dr. S) at the University of Illinois, Chicago who believes that the antibiotic protocol works for some scleroderma patients. She’s treating Zoe with oral minocycline and indicated she’s open to the IV approach in patients whose scleroderma is active. She told us that she sees no reason why Zoe won’t have a long fulfilling life.
In addition to minocycline, Zoe is on thyroid medication for hypothyroidism. She’s also seeing a plastic surgeon at the University of Chicago for her Raynauds. In 2015, he will do fat injects in her hands and face. While Botox and Viagra are still used in Raynauds and Scleroderma patients, he has had great success in reducing not only the occurrence of ulcers but increased circulation and flexibility.
I’ve attached a link to a presentation the doctor gave at a recent conference:
Dr. Z may be a little difficult to understand at times. Please keep in mind that he was in a car accident several years ago and the only lasting impact was on the clarity of his speech. He’s a wonderful doctor.