Okay, here's my story... In March 2003, after hiking in the Grand Canyon, I noticed my left knee was a little sensitive. I dismissed it as a little soreness from the hike. Perhaps I had "tweaked" it stepping off a rock or something. Well, then it started swelling and a couple weeks later my left ankle started swelling also. A week later, (at my wife's insistence) I checked in to the hospital ER where they did a sonogram for blood clots but found nothing and sent me home with anti-embolism socks and instructions to take Advil.
I made an appointment with a doctor and by the time I got in, two weeks later, the swelling had jumped to the right ankle as well. He couldn't figure out what was going on and told me to take Feldene and check back in a week. By this time the swelling had spread to my right knee and there was edema throughout my legs. Another doctor in the practice decided to start a series of tests. They took my blood and urine and sent me back to the hospital in a week for another sonogram, this time on both legs, and a CT scan of my abdomen to look at my liver and kidneys.
Another week passes and the report comes back that everything looks normal but let's try Prednisone to reduce the swelling. By this time my feet are so swollen and painful I can't put on shoes and have to go buy shoes two sizes larger. I can hardly hobble. Another guess from the doctor - it might be Ankylosing Spondylitis - let's add Methotrexate. Two G's worth of tests and they're still scratching their heads?! Are these guys incompetent, or what?
I decide to see a rheumatologist. He's new in town and advertising for patients. He just moved to Colorado from Nebraska and has 15 years experience. He checks me over, asks lots of questions, takes more blood and decides I have Rheumatoid Arthritis. At last, a diagnosis!
One day my piano tuner, David, came to tune my piano and when I told him about my battle with RA he sat me down and told me about The Road Back and AP. His wife has Scleroderma. Her skin began getting tight, turning brown and getting hard and leathery. She gave up playing the piano when her fingers began to curl and got too painful. Her doctor couldn't figure out what was wrong. Then one evening, while watching a report on autoimmune diseases on TV, she said, "David, I know what I've got!" She learned from the report she had only a few years to live. She began researching for a cure and came across the book, "The New Arthritis Breakthrough". She found the Antibiotic Protocol and showed it to her doctor and got a prescription for tetracycline. Within a few months her skin condition cleared up. (A few years later she switched to Minocin.) Now, thirteen years later, she is healthy and still in total remission of the disease!
That was enough for me. Armed with Henry Scammell's book, The New Arthritis Breakthrough, (which I read cover to cover) and the Antibiotic Protocol printed out from the www.roadback.org web site, I went back to the rheumatologist and told him, "I want off Methotrexate." He said, "No way." After a 10 minute discussion (he wouldn't even glance at the protocol), I clearly understood that he only wanted to push his toxic drugs and have me come back to him each month for blood work to monitor the gradual and inevitable deterioration of my liver. I told him I needed to find another doctor and I got up and walked out of his office. Am I starting to sound cynical of doctors?
I'm wondering if there is a cause and effect relationship here. Let's go back a couple years.. In June of 2001 I went to a dentist and he drilled out an old filling to prepare the tooth for a gold crown. It was the back tooth on the upper left. From then on that tooth was painful and sensitive to pressure - I couldn't chew on that side.
In March of 2002 I went to an ENT (ear, nose, throat) doctor because I lost hearing in my left ear. He diagnosed it as a middle ear infection and he performed an OtoLAM - perforated the tympanic membrane (eardrum) with a laser to admit Cipro antibiotic ear drops directly into the middle ear daily. The infection (and deafness) persisted and in May we switched to antifungal ear drops. Still no relief, so on May 30 I had a CT scan taken of my head to look at the sinuses and mastoids. The EMT doctor determined I had chronic sinusitis and on June 26 preformed Functional Endoscopic Sinus Surgery (FESS) including straightening a deviated septum. After the five most miserable days of my life, I got the packing taken out on July 1.
After the FESS he threw the whole medicine chest at me. I was put on Darvocet, Cephalexin, Propoxyphene, Fluorouracil (Efudex), Mometasone (Nasonex), and followed in a couple weeks with Ciprofloxacin 750mg, Guaifenex, Guaifenesin, Dicloxacill, and Neomycin/Polymyxin/Hydrocortisone Otic along with twice daily drops in the ear and irrigations of the nose. I had so many medications and times to take them I had to set up a spreadsheet to keep track of them! The congestion in my left ear didn't clear up.
September 4, 2002 the ENT doctor performed a tympanomastoidectomy on my left ear to physically clean out the infection. A PICC line was installed in my arm and Clindamycin was self-administered intravenously every 12 hours and Ceftriaxone was self-administered intravenously every 8 hours - for 2 weeks! Then I was put on Doxycycline 100mg/day for a month. Sporanox nasal spray was also used daily. I soon developed oral thrush and was given Nystatin and Acidophilus to combat the fungus. I stopped eating all foods containing sugar, including carrots, to control the Candida Albicans.
For over a year I had blindly followed all the directions of doctors. Through the surgeries a nerve was severed in my nose and I lost feeling in my front teeth, a nerve was severed in my ear and I lost taste on my tongue and only 40 % of my hearing was restored in my left ear after the infection was cleaned out. Through all the toxic medications I was given, I developed yeast infection, fatigue, a compromised immune system and sensitivity to sun. Four months later I have this flair that is (finally) diagnosed as Rheumatoid Arthritis. I had gone from a healthy, active, energetic man to a weak, arthritic, deaf invalid within just a couple of years.
Now I've resolved to be proactive and aggressive with my own medical treatment. I can no longer totally trust my fate to doctors. Boy, was I dumb! I need to learn enough to double check my doctors and to get second opinions. Now, the internet is a wonderful tool - if used with care. I'm skeptical of everything I read until I've thoroughly researched it. But there is a wealth of wonderful information there when you dig for it. I've found valuable information on www.rheumatic.org , bulletin boards and a chat room on www.rheumaticsolutions.org with people willing to share their experience and knowledge with me.
So, why am I telling all this to total strangers? What am I, nuts?! Well, I have been so blessed and excited to have found a way to manage this disease I just want to share this with others. I hope this encourages others with chronic illnesses to find their answers too. Now I'm off the Prednisone, off the Methotrexate, and I'm beginning my sixth week taking 100mg Minocin M W F. I've Herxed only once. The "brain-fog" has lifted, the swelling is almost gone (I can't bend my left knee all the way yet.) I'm back to my 45 minute daily walks with my wife and I'm feeling great. I'll be hiking again soon.
My three-pronged approach to regaining and maintaining a healthy immune system is through antibiotics, diet and attitude. (1) I'm committed to the Antibiotic Protocol. (2) My diet has drastically reduced or eliminated the bad "white" foods - sugar, grains, dairy, etc. I have included probiotics, lots of raw veggies and juicing. (3) My attitude includes PMA, EFT, faith that every day in every way I'm getting better and better, and prayer. I know that this is a winning combination. I hope this helps you to persist in finding your road back to optimum health.
May God bless,
You can reach me at firstname.lastname@example.org