Home Community Member Stories Martha

Martha

Mrsrose2000@aol.com 

Working in a flower shop requires some heavy lifting at times, bending over, hauling plants around the greenhouse, etc.  So when I first began having unexplained pains in 1993, I just tried to shrug them off.  The trouble is the pains kept shifting around, I would wake up and wonder what part of my body was not going to be working today.  I had just gone through a major family tragedy and felt that the stress was doing this, if I just kept putting one foot in front of the other, it would eventually work itself  out.  The trouble is....it didn't work itself out.  My next door neighbor who was also a doctor ran a bunch of tests when the pain got really bad.  He told me that although my blood tests were not conclusive, he believed I had RA brought on by stress.  If I was lucky it might eventually go away, but in his experience if it did not go away in a year I would probably end up with a diagnosis of chronic RA.  

    For the next three years I took NSAIDS like they were candy and popped pain killers on the side.  Some things worked for awhile and then stopped and others did not work at all.  Each day I got more tired and depressed, often coming home after work and falling into bed at 7:00 and still feeling tired at 7:00 the next morning when I had to get up.  At this time I also set about educating myself on RA and what I found out I certainly did not like!!  I roamed book stores and read all the latest...from diets to supplements.  I tried everything and still nothing really worked.

   About this time I also came across a book entitled "The Roadback" by a doctor who felt RA wdas caused by an infectious agent we either ingested or through a scratch.  I showed the book to my doctor neighbor and he said he had heard of it but did not know anything about it.  He did feel the treatment was relatively harmless and therefore was dubious as to its value.

   Meanwhile, I was getting worse and worse.  My right hand fingers had shifted to the side (the classic RA look) and I was having a terrible time with my feet.  I also hurt all the time and my stomach after four years was in terrible shape.  My doctor sat me down and was brutally honest with me..(remember we were neighbors).  This was a serious and potentially fatal disease.  Some of the meds used could be as damaging as the disease itself.  It was up to me to educate myself and be aware of what my treatment was and the side effects.  Doctors had hundreds of patients, I only had one body.  It was up to me to make sure the right treatment was given and up to me to speak up if I felt things were going downhill.  I needed to find a rheumatologist as my neighbor was a GP and he refused to deal with the meds needed as I got worse.  He was particularly specific about how terrible Prednisone was and I may have to make the choice between a longer life or a less painful one.  Prednisone is of course a staple of the Rheumatologists bag of meds.  I had been on and off very low doses for three of the four years.

   My new rheumatologist was very nice.  She dismissed my questions on antibiotic therapy as discussed in the book "The Roadback".  Said it would not work unless I was newly diagnosed.  We started on larger doses of prednisone and Plaquenil.  This kept me on my feet...barely for the next four years.  Then I noticed the pain relievers were not working, which meant the plaquenil was starting to be less effective. My right hand now resembled a bird claw and the fingers of my left hand were shifting.  My feet were getting so sore I was having trouble working and I knew if something was not done I would have to sell my flower shop.  Sometimes I could not even hold a pencil to write out the orders.  Eight years of RA and I was a wreck.

    I was slated to start Methotrextate and I again asked my rheumy about Minocin and the antibiotic therapy.  This time she was not so nice, she just blew me off and told me I was going on MTX and she would set it up...then she walked out.  I was astonished at her rudeness.  Then I got really angry.  How dare she treat me like a child, this is my body and my pain.  It was very obvious that she wanted no discussion and I was beginning to doubt she had much compassion for her patients.  But in reality she did me a big favor.  If I had not gotten angry I would have stayed and continued a long downhill slide.  Her meds are aimed at slowing down the progression of the disesase.....I wanted a med to stop the progression.

   I went on the internet and found a doc who specialized in AP (antibiotic Protocol) therapy.  I decided to give it one year and if I was going to try it, I was going to make sure I had a doc who had had a great deal of success with it.  On May 19 2001 I had my first appointment.  I was hopeful and also skeptical.  The treatment just seemed too good to be true and my husbands last statement to me as we got out of the car was, "just don't get your hopes up."  

    Well, after a mind boggeling list of blood tests I started his treatment.  There were six numbers we watched, but for me my  main one was the RA factor.  Fortunately my bloodwork always looked better than I did.  My RA factor was 30 at the start of treatment.  The next month it went to 22.  The next month it went to 18 and the last month it went to 13!!!!  After the first month I stopped prednisone.  The second month I got off plaquenil.  By the third month my pain was 90% gone.  At the end my left hand looked normal again and my right hand,though still damaged, looked considerably better.  My feet also perked up and thoughts of selling my store vanished.

    Today I am on a small maintanance dose of Minocin.  I have met people who have stayed on this protocol for 20 years and have never had a relapse.  I knew with my old rheumys standard treatment, after a few years the meds usually slow down and people end up with medicine cabinets looking like a drug store.  They usually take several in combination.....and usually still have pain. With the new doc my pain is 99% gone.

    Today I am back at the store working a 10 hour day six days a week.  I take stained glass classes at night and this January bought my first horse.  I am still not the most graceful at mounting, but a year ago I could not have even thought of lifting up my foot to get in a stirrup.  If I did my knees would never have been able to lift my weight off the ground.  A year ago if I had fallen to the floor someone would have had to lift me to my feet....now I can even take baths and get up and down myself. I know this particular medical treatment is not in great favor with doctors.  But I am here to say that ...FOR ME....after eight years of chronic RA.....it did.  This new doc was getting a 70% remission rate in his RA patients....so why don't other docs use it???? I just don't know.

    Educating yourself and making your health your number one priority is up to each of us.  For some diets or yoga work wonders.  Others do find a med that keeps the disease at bay for long periods.  We all just need to keep searching until we find what works for us.  The internet gives us great tools to search for information and to network with others.  For those who have not found the right key to their illness...keep searching....try new things....new docs...whatever it will take to get you well.   I have been where many of you are and I know how terrible the pain can be. You all have my deepest compassion and a wish that you find an end to your pain as I have done with mine.