DOLORES, systemic scleroderma
So many new patients have questions about the antibiotic protocol, this so called controversial approach to these diseases. Some doctors with high esteem still consider the infectious origin of connective tissue disorders to be experimental and we who have the diseases and have been or are on antibiotic therapy can attest that it does work. The ingredient that we, impatient, patients must add is patience. It is a long slow process, but definitely worth it as so far there are no other known or proven options.
My story began back in 1986 while living in Hawaii. It started with some low back pain upon arising every morning and then going thru the day getting increasingly tired, unable to keep my eyes open all day and yet unable to fall asleep at night. Before long, I started running low grade fevers and one day it went up to 103 degrees. I also noticed my urine turning brown. I went to the doctor and was labeled an alchoholic with an enlarged fatty liver. Mind you, I have never been a drinker of any kind, social or otherwise. I landed in the hospital ER where I was then diagnosed with mononucleosis.
Disgusted, we came back to the Mainland USA where my husband got his old job back as I was unable to work. Was then tested and came back positive with CMV (Cytomegalo Virus) & EBV (Epstein Barr Virus) and I was given a short course of antiviral medication called Acyclovir. This helped a bit, but then I came down with pleurisy and was not tested for any lung or other infections. I spent at least a year trying to function. Then I was told I might have CFID, although it wasn't called that then. Some docs said there was no such disease as Yuppie Flu, etc. These are some of the names they gave this phantom condition. And that was the end of that.
Through the next ten years, my health continued to deteriorate. To shorten the story, I got diabetes, coronary artery disease, hypertension, irregular heartbeats, spinal chord anomalies, irregular gait and the uncontrolled urge to sleep and not be able to. I was sent to therapy and when that failed, they said I should go to the mental health center. Then I suddenly started to lose weight, 40 lbs in all and my muscles hurt so badly, I couldn't roll over in bed. My skin became tight & shiny, joints became enlarged, there were noticeable facial changes and an MRI & CT-scans showed I had developed pulmonary fibrosis. All told I had four heart surgeries.
This finally led to a diagnosis of Systemic Scleroderma. At this point, I was told that I was terminal. They said there is no cure but they could offer me comfort with steroids, chemo and some new drugs like methotrexate, Remicade & Humira which tamp down the immune system. This was my Christmas 2005. My husband and I were devastated. My first cousin had died from the effects of the same steroids they had given him for Lupus. Thank God, a woman led me to the Roadback.org site who led me to Dr. Trentham in January, 2007. He put me on Minocin and my recovery is a matter of history. It took 18 months to go into remission. If you have never taken steroids it goes faster. Taking steroids in the past will prolong the time. But as long as you are breathing, it is never too late to start. I went on vacation for several months in 2007. Went snorkeling, kayaking, mountain climbing, hiking, swimming and did lots of walking.
Upon my return I started a new protocol called MP. Like everything else, some say it is controversial. To me it is just an extension of the antibiotic therapy which adds more antibiotics. I urge all you newbies to read Dr. Brown's book, "The New Arthritis Breakthrough" along with the one his friend Henry Scammell wrote specifically for scleroderma, "Scleroderma, The Proven Therapy that can save your life", if that is your disease! The important thing to know is not to let your guard down. The bacteria/viruses that attack the immune system, know no rest. They can re-attack with a vengeance! They are slow growing and slow dying. They have no cell walls and can morph into shapes (like L's) to enter your immune cells and kill them. When enough of your immune cells are down, they cannot do the work they were designed to do, that is to fight off these organisms and keep you healthy.
This is a one-step forward, two steps backward fight. We must continue to protect ourselves and get tested, most likely for the rest of our lives. The good news is that we can LIVE with these diseases and continue to fight off the invaders. We can live fruitful lives and function. Just stay one step ahead of them. I am resigned to the fact that I may have to take antibiotics off and on for the rest of my life. I have been given a second chance at life. I consider myself fortunate.
Thank you, Dolores P. Rosner
You can reach us at firstname.lastname@example.org