In April 2014, I noticed that my leg strength had diminished. I mentioned it to a trainer, who said I could quickly regain that strength. She had me do various exercises including asking me to squat down and jump up. When I squatted I was unable to stand back up on my own, let alone jump. She advised me to see my doctor, as my sudden loss of strength could be an indicator of something serious.
I went to my doctor and blood tests showed elevated CPK and CKMB levels. CKMB is also a marker for heart attacks, so I had an EKG and other tests, which all came back ok.
I thought my weakness was caused by an earlier thyroid condition and low B12 levels. I had seen polymyositis in my research, but didn’t think that was the issue, as it’s so rare. My family doctor referred me to a rheumatologist and a neurologist. While waiting to see these specialists, I discovered websites discussing antibiotics for rheumatologic disease and asked my doctor if I could start this treatment. He agreed and I started Minocycline 200mg twice a day Mondays, Wednesdays and Fridays on June 15, 2014.
I found cpnhelp.org and learned of chlamydia mycoplasma. Testing confirmed I had c.pnuemoniae mycoplasma. In September my doctor and I established this protocol:
• Minocycline 100mg twice a day (one in AM, one in PM) everyday
• Azithromycin 250mg once a day every Monday, Wednesday, Friday
• Flagyl 500mg, 3 times a day for 5 days, every 25th day of Month*
• Fluconazole 200mg, 1 a day for 5 days during the Flagyl Pulse
• Probiotic – everyday, except during flagyl pulse, taken two hours away from antibiotics
• I also take NAC 1200mg once a day & Vit D3 5000 units once a day
Shortly after starting this protocol, and after many blood tests, nerve testing and a muscle biopsy, I was formally diagnosed with polymyositis.
The neurologist referred me to the rheumatologist for a treatment plan. His plan included 60mg of prednisone every day for six months. The side effects of prednisone were very concerning to me. I told him about the antibiotic treatment and he suggested I continue seeing my family doctor for this as he was not familiar with the protocol. My family doctor agreed to be my primary treating doctor for polymyositis, to continue with the protocol, and monitor my condition every six weeks.
Since I started the antibiotic treatment in June of 2014, I have seen my CPK levels drop steadily each month, returning to the normal range in July, 2015. My strength has continued to improve. I am feeling stronger each day, though some days I am weaker than others. I think this is normal, but because I have lost so much strength it is more noticeable to me now.
When this journey first started, I was scared and horrified at the prospects of the mainstream medical treatment for polymyositis. I am so thankful for the websites out there like cpnhelp.org and roadback.org that led me to a treatment that truly goes after the root of the disease and not just treat the symptoms. I have a 24-year-old independent daughter and a son who just started his first year of college. My husband of 25+ years and I are empty nesters and enjoying this new time we have together. Life is good, God is GREAT!
• Initially my only symptom was leg weakness. This was a very subtle change. Going up the stairs, rising from seated position took more effort than they had previously, Eventually I noticed that I also had some difficulty swallowing that is also attributable to polymyositis as well as extreme hot flashes.
• *Flagyl Pulse: Every 25th day of the month (when starting this pulse, you only take the med for 1 day on month 1, 2 days on month 2, until you reach 5 consecutive days, then you stay at the five days after month 5. While taking this pulse, I am more emotionally vulnerable than I am usually. The first 2-3 days of this pulse, I find that I want to cry, but can’t.
• I did and still experience Herx reactions even though my numbers are in the normal range. At the beginning of treatment, I would have ghost pain at areas of past injuries, and sometimes I will have a pain in either foot that will cause me to limp for a few hours. Later I developed itchy rashes around several areas of my body.
• At several points in my treatment, I would get thrush, a yeast infection in the mouth and throat. I drank lemonade and took Fluconazole during the flagyl pulse to combat thrush.
• I should mention that I see a DO, a doctor of osteopathy. I suggest everyone look here (http://www.osteopathic.org/osteopathic-health/about-dos/what-is-a-do/Pages/default.aspx) to learn the difference between MD’s and DO’s. Both are fully qualified physicians licensed to prescribe medication and perform surgery. My DO is a board certified doctor with hospital privileges; the biggest difference is more holistic training.
• Surround yourself with people who love and support you. When something is bothering you, reach out to others.. Early on when I was struggling, I called a girlfriend and told her I needed prayers. She called our group of friends and they talked me through the fear. Each of them put their hands on me and said a prayer of healing. It was a beautiful, unforgettable experience.
• Guard your state of mind. Do everything you can to be optimistic about your treatment and its success. Your attitude about your healing is very important. Push yourself to do the things that are part of your normal routine, while being gentle and caring to yourself and your body. I would be glad to talk to you and share any information I can to help you or your loved one through this journey, just send me a private message through the Community Forum (username LBC28278)