Lupus/Rheumatoid Arthritis

At the age of 14 I came down with what we thought was a terrible flu, a fever and extremely achy joints and fingers turning white with no circulation.  My pediatrician tested my blood and most indicators for Lupus were positive.  I was sent to a Rheumatologist and started on Prednisone & Hydroxychloroquine.  Prednisone was used intermittently until two years later approximately when I was moved to Methotrexate and kept on the Hydroxychloroquine.  I had swelling in the joints, considerable at the wrists & knees, pain sometimes when breathing, lack of energy, and was pretty miserable losing the abillity to participate in most of the sports I had enjoyed.  At that time a Rheumatologist at UCLA that my folks flew me to L.A. to see diagnosed me with “Rupus” defined as a cross between Lupus & RA in my symptoms & blood tests, I was 16 then.  About 4 years later n 2013 my parents first heard of a possible “infection connection” in Rheumatic Diseases, which led my Mother to “The Road Back” book, and hence the website.  The website led to a Dr. in Utah practicing the antibiotic protocol, and Clindamyacin drips once a month were started and Minocycline of 100mg/day on MWF (I was in CA for college by then and could only get my drips when I would come home for a visit).  Within 2 weeks of starting the AP I had a fairly mild herx and decided (on my own!) to go off of Methotrexate, I was so tired of being on such a nasty drug.  Within 2 months I was able to wear rings again, and started to feel better.  Within 6 months my blood was tested and all of my inflammation markers were cut in half, and the RA markers were hugely improved and the Lupus markers were improved too.  I knew my blood work would be improved as I felt so much better, I was able to start all the sports that I had given up again.  About 6 months back I was feeling so good that I got a little complacent taking my Minocycline and my symptoms started to return once I didn’t take it regularly.  I have been more diligent now in staying on my Minocycline, and have returned to a hugely improved state.  Right before I went on Minocycline my Rheumatologist tried to get me to go on a Biologic drug (Enbrel or Orencia).  I am so happy I tried Minocycline instead as the side effects (so far…) have been literally nothing, and I feel so great I am participating in all the sports I use to participate in prior to my diagnosis at 14 years old.  I can tolerate the cold weather better and ski again.  For anyone “considering” the antibiotic protocol, I would tell them that they have NOTHING to lose, and EVERYTHING to gain 😉   – Tyndall