One womans JourneyMartha M
RA 12 years
My story starts in 1993 just two months after I had buried my only son BJ. I was in a terrible depression and barely noticed the physical aches and pains that came on slowly. When ones soul is in the deepest pits of despair, you simply don’t care about physical problems so I just ignored them.
They say many diseases are activated when people are under severe stress. I believe this is definitely so. It certainly seemed that way for me. For the entire summer I just ignored my physical problems….I simply did not care.
One morning in the fall I went to get out of bed and fell flat on my face. I could not put any weight on one foot. My feet had been giving me problems along with my hands, but I had limped into work and tried to pretend nothing was wrong. I called my neighbor a General Practitioner and he told me to come to his office immediately. I drove there and he listened while I told him of my symptoms. Mostly aches and pains that traveled from joint to joint. Stiffness every morning and pains in my joints at night causing me to toss and turn in an effort to get comfortable. My hands and feet were the worst but any joint might flair up and then slowly go back to normal. He ran the standard blood tests and gave me meds for pain.
A week later he told me I was in the high normals for RA. That did not mean I did not have it. He felt my symptoms were classic and even though I did not test positive, in all probability he felt I had RA. Sometimes he said it went away by itself. If I had it for more than one year, I was probably going to have to live with it for life.
For the next four years I stayed on various NSAIDs. Very seldom was I pain free in spite of all the meds. My neighbor, a kind man, brought bags of samples home to try to find one that would work. The only thing that really helped was prednisone. At the end of this time the fingers of my right hand started to shift to the side. My neighbor was insistant I see a rheumatologist, since he was moving to another state to take up a post, I agreed with reluctance. Part of it was during this time we had discussions of the meds used to treat this disease. According to Jim, they could be worse than the disease itself. He felt that I should learn everything about RA as the time was coming when I would have to decide whether I wanted quantity or quality. He was very honest and open about this, very direct in his assessment of the drugs (most of which he felt had serious side effects)and to this day I am grateful for his openness. He felt I should take a positive role in the decisions made for my disease, as I was the one who had to live with those decisions.
Of course this tended to put me at odds with the new rheumy I went to. I had come across a book on Minocin and wanted to try it, she refused. I ended up going on the Plaquenil that she recommended, and at first did well on it (along with the ever necessary prednisone). At the end of four years the plaquenil, even in large doses, was ineffective. My left hand was starting to look like my right hand, I could barely walk, knees were swollen and painful, and I could no longer straighten out my arms or raise them over my head. Sleeping a whole night through was a distant memory. My Rheumy wanted to start MTX immediately. I again brought up the subject of minocin which I had been researching for the last year. She looked me straight in the eye and told me MTX had few side effects (wrong), the Minocin would not work (wrong), and I had better get used to the idea that I had RA and was going to have to live with it!!! She then slammed the door on her way out. I was furious!!
I stormed out of her office, paid her bill which she had doubled as a penality for questioning her, and climbed in my car. As I struggled to turn the key I broke out in sobs and layed my head against the steering wheel. "Oh God", I sobbed, "If you will just find me a miracle, I promise I will tell everyone about it."
That night I got on line and put out an inquiry for a doctor im my area. Unfortunately Tennessee had only three listings. I called all three, two were no longer practicing, the last was three hours away. I decided if I was going to do the antibiotic protocol, I wanted a doc who was experienced. I hesitantly asked the doctor when he called me back what percentage of people he was getting in remission…........his answer 70%. I made an appointment.
I won’t go into the details of his treatment which was a bit different from Dr. Browns protocol. Suffice it to say I was in complete remission in 6 months. I was estatic. I never in my wildest hopes thought I could feel this well again. I went on 100 mg minocin three days a week for maintanance. Life was great.
Now we’ll jump ahead four years. It is spring of 2005. I have had small aches and pains all winter which I got rid of with an aspirin or two. Nothing really bad. Just annoying. Surely things will get better with spring weather. My husband and I take a trip to a casino in Memphis….suddenly I am having a hard time walking. My knees are swollen and my feet are unable to walk, its like the RA is back in full force. Like I have been slammed into a wall of pain. I panic. I don’t want to go back where I was before Minocin.
I call my doctor when I get home and he does not have an opening for five months. People have found out how good he is and are standing in line to get to him. My stomach does a lurch, I need help now!! I call my regular GP and he gets me in immediately. He has been giving me the minocin prescriptions and is sympathetic to the protocol. Problem is..I am his only patient on it. We put our heads together and decide to go back on 100 mg minocin twice a day everyday and see what happens. I reluctantly fill a prescription for small dose prednisone. Although I was on a combo of meds with the arthritis doc, my GP is not enthusiastic about Nizoral or Flagyl. I start the increased Minocin dose. In a month my pain has just about gone and I’m off prednisone. Another month I am completely pain free, a third month and we run blood tests. I am once again in remission, my bloodwork all came back in the "low" normals. I am now back on the maintanance dose.
I have learned that for most people this treatment will work. This is not a one size fits all treatment and sometimes people will have to "tweak" their meds to get the best outcome. All of us are different, some have had the disease for years, others are newly diagnosed, some have just a few joints involved, others find its all over their bodies. Some of us have high pain thresholds and plow through the pain with high doses of Minocin, others go slowly with small doses. It is mostly a treatment of patience and persistance. I have personally only come across one person who did not get some benefit from this treatment. She was a lady who only took Minocin for two months and then gave up, no amount of pleading would change her mind. Now while I am at the gym working out….she is housebound in a wheelchair. Life is not always fair, but much of what we get is a matter of choices made.
I recommend that anyone who is sick and tired of BEING sick and tired try this protocol. If your rheumatologist refuses, try a family or general practitioner. Better yet, the first time around drive to an experienced doctor even if you have to go to another state to at least get started. Many docs are much more comfortable keeping you on a protocol that another doc has started. Be assertive…this is your life that is at stake. Without the minocin I feel that I would be housebound or even dead by now. The choice is in your hands…...............