Oh that long and winding road back

[Betty S]

3/18/09

I was diagnosed seronegative RA in March 2008. I had no idea what I was in for and couldn?t reconcile myself to the fact I had come down with a chronic, incurable, disabling illness (according to traditional medicine anyway). I had never been seriously ill before, but my life?s foundation has been built on Christ my Savior and Deliverer, not just for the life to come, but also this life here and now.

I had been seeing an integrative doctor who tried treating me with natural methods first like fish oil and identifying food sensitivities like gluten or night shade vegies etc. Nothing worked, swelling and inflammation were marching up my body starting at my feet and going up. In March I was finally able to get in with a rheumatologist and he immediately started me on Plaquenil and Prednisone. The next month he added Methotrexate. At the time he described my RA as moderate. In the meantime, I prayed/begged continuously for God?s help and mercy. My husband, family, and friends prayed also. I have never faced such a Goliath in my life before. The pain, stiffness, swelling and disability are pure torment from hell. God did not bring this disease upon me. I believe it is just a consequence of life on our corrupted earth. But I look to Him to bring me through it, to the other side.

As my rheumy was weaning me off Prednisone in June-July 2008, my symptoms started returning and I realized there must be another way for me. I asked God again to help me find it. About mid-July I found information on the internet about antibiotic therapy and I was determined to request abx from my rheumy at my next appointment in early August. His comments to me at that visit were that even though I was seronegnative RA, I had a very active disease and his recommendation was Enbrel, not abx. Because I kept pressing him, he gave me a script for a 3-month supply of Doxy 100 mg 1xday.

During that 3-month period I kept going downhill, just getting worse and worse. I knew I could not go back to my rheumy in this condition. I knew he would not let me continue the abx. I decided to contact my integrative M.D. to see if he would help me, and he said he would. I continued with the Doxy, Plaquenil, and MTX but I just continued to decline to the point where my husband had to do everything at home and also help me. My blood tests kept worsening and my pain and disability were such that I think I cried daily. There is a particular scripture verse that has sustained me throughout (2 Corinthians 9:8) ?God is able to make all grace abound toward us that we always having all sufficiency in all things may abound to every good work.? This verse kept running through my head and out of my mouth — God is able . . . .

It was early December 2008 and I decided I needed another opinion about my condition. I already had received the name of a local AP doctor from the Roadback site and I decided to call for an appointment. I saw Dr. T on January 7, 2009 and she confirmed my fear that I was not herxing, but was experiencing the disease itself spreading and worsening. I had been on the Doxy for 5 months at this point and she did say that she told all her patients to give it 6 to 8 months to see improvement, antibiotic therapy is slow. She changed the abx from 100 mg. Doxy 1x day to 100 mg. Minocin 2x day Mon, Wed, Fri, and Sat. I asked her if she felt abx could work for me and she felt that it still could but needed more time. In the meantime, however, we have to do whatever we can to keep inflammation down. I was still on Plaquenil and the maximum amount of MTX and it didn?t seem to be helping. She was concerned about the condition of my right wrist and recommended I go back to my rheumy for a cortisone shot to avoid joint damage. I told her he would not be happy when he saw me as I had not been to his office in 5 months.

After leaving the AP doctor?s office, I called my rheumy?s office and got a bumped up appointment in two weeks. I could hardly wait as my wrist and hand were so painful. To say that he was unhappy with me was putting it mildly. He was appalled at my condition. He said I had severe RA since so many joints were involved and I needed to go on Enbrel right away. He stated that my experiment had gone on long enough and that he was not my AP doctor?s injectionist. He wasn?t going to give me an injection and suggested I come back another time. I told him I would not go out the same condition I came in. I told him I would go on the Enbrel, but I needed immediate relief with a shot in my wrist. He gave me the shot, dropped the Plaquenil from my meds list and told me to continue taking the MTX as it worked well with Enbrel. I asked if I could continue taking the Minocin and he said he saw no point in taking it further. I was disappointed in hearing him say that because in just the 2 weeks I?d been on it, I felt I was already sleeping better.

When I left his office I?d made up my mind I would continue with the Minocin at least for another 2 weeks until the Enbrel regimen would start. At that time I was also due for another blood test so I told myself I would see if the Minocin was impacting the blood markers at all after one month?s use. The day the blood test results came, my jaw dropped. My Sed Rate came down from 65 on my previous test on Dec. 17 to 22 on Feb 6 and my CRP came down from 15.9 to 7.3. I called my AP doctor to excitedly tell her the news and ask her if the cortisone shot I?d gotten over 2 weeks previous may have impacted the numbers. Her answer was that she didn?t think the cortisone would have made that much of a difference. My next appointment with her was on March 4. In the meantime I did get my first Enbrel shot and in a way I was glad because I still had swelling even though I was feeling some improvement from the Minocin. I had some improvement from the Enbrel, but I also got a heck of a bad cold a couple of days after the shot.

After the Enbrel shot and the cold, I decided not to take another shot (I was supposed to take it once a week) till I got back to the AP Doctor?s office March 4. That was approximately one month away. During that month I continued the Minocin and continued to see slow improvement. When I got to the AP doctor?s office, we both believed the abx was working and she said the time frame (6-7 mos on abx) was about right for when she would expect to see improvement. She was concerned about the swelling on my knees, however, and said it was OK with her if I took another Enbrel shot to get the inflammation down. That night I decided I may as well so I gave myself my second Enbrel shot, and I must say I?m not noticing much benefit so far.

I don?t know what?s going to happen at my next rheumy appointment as I?m not doing what he instructed, but I know I must continue with the Minocin. I believe I?ve finally turned the corner with the abx. It may have been the change to Minocin and the new pulsing schedule. My next rheumy appointment is March 24. I will cancel and push it off for one more month to give myself more time to improve before I present myself in his office.

4/14/09:   Received my most recent blood test done on 4/3/09 — Success – Success – Success!!  My blood markers are either in the normal range or have come down dramatically.  My blood platelet count during the time I was most ill was at 719 in December, 2008.  It has come down to 333.  My Sed Rate has come down to 11 and my C-Reactive Protein is <.2.  Anemia has come down to a very mild level.  I still feel some stiffness and swelling, but I think with more time, it will all be taken care of.  What a blessing! 

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