Here’s my story: I began having unexplained pain in my hips in 2011, thought I was doing too much in gym, but then each week I developed new pain/stiffness in many of my joints. Went to my PCP, he referred me to a Rheumatologist and started me on Naprosyn, 250mg BID. Took several weeks to see Rheumy, my blood work was neg for all RA markers except for a CRP of 28, was diagnosed with sero-neg RA. Given Rx for Prednisone, Methotrexate, and was told I might need to start a biological if these meds weren’t helping. I was speechless, told the Rheumy that I have a family history of Lymphoma, I’m a Nurse Practitioner and work in a clinic with patients who are often sick so having my immune system compromised was not a good idea to me. I asked if there was any other options, Rheumy just said no and that I would get worse if I didn’t start treatment. I did a ton of research and came upon the Road back web site and Dr. McPherson Brown’s protocols with antibiotics. This sounded like a much better option to me. I called the Rheumy and asked about this. She told me that she never heard anything like this and I would be wasting my time while my joints would worsen. I tried to find a Rheumatologist who used the AP but had no luck. I began treating my self with Minocin (which was readily available in 2011), 100mg BID, Mon-Wed-Fri. I went through what everyone else has gone through, worsening of symptoms, pain everyday in all my joints, fatigue, depression. I stuck it out with 1200mg of Naprosyn daily and when I hit my 8th month of treatment I started waking up with much less pain and stiffness, initially I thought I must be dead, too good to be true. By the 11th month I was completely symptom-free, had my life back again. Amazing what we take for granted daily. I slowly tapered off the Mino and thought that if my symptoms returned I could just start again. I went 5 years in complete remission without Mino, just adhered to a grain-free, healthy diet, supplements of Vit D3, Probiotic, Krill Oil. All was well until Oct 2015 when I started to feel pain in the hips again. I was in denial, no way could this be happening again, but the same course of migrating pain/stiffness began again. Unfortunately, I waited a little too long before starting AB’s again, could not get brand Minocin anywhere. I had access to brand Doxy (Vibramycin) and started that in mid-December, same dosing of 100mg Mon-Wed-Fri and this time I actually was able to find an AP Rheumy in NYC (Dr W) who was wonderful. (had a 1+ month wait before I could get an appoint with him). He took a thorough history on me and wanted me back on the Mino instead of Doxy. I could only get a generic (Torrent) which I have been on now for the past 3 weeks (herxing again, ugh!). The only thing that I associated both of my episodes with was that I had a pretty bad respiratory infection a few weeks before both occurrences. Told that to Dr and he said it’s uncertain if there is any connection. Anyway, I’m a firm believer in the infection (mycoplasma) connection and I know I will improve with time. I have a great deal of empathy for anyone with RA or other auto-immune diseases. If you ever feel like you need to talk to me and share your experience or have questions, I would be more than happy to discuss with you. AP works for many, you just need to be very patient and give it time. So less toxic than the current drugs used to treat this.
Be well, and don’t give up!