Thrilled to Have Foung The RBF

[Char M]

Here goes, I will try not  to ramble. I guess for me it started the beginning of 2006. I had started missing periods so I went to the doctor and happened to mention some other aches-pain in the upper back, pain in the right abdomen area etc. (The period is still irregular, my gynecologist feels I'm in peri-menopause.) After a year of ultrasounds and ct scans it revealed my gallbladder was inflamed with possible polyps. So, in June of 2007 I had my gallbladder out, there were no stones and no polyps! ( I really wished it was treated as if it was infected – not surgery. I know so much more now than then.) Up till this point I did not have any arthritis symptoms, at least nothing that would have made me think arthritis. Shortly after I had these weird instances of not be able to raise my leg, it hurt up at the hip. Right leg, left leg, right again. I attributed this to the new exercise bike I was using. Then it hurt to raise my right arm, later the left arm. All this would come and go. Again I thought it was strain.
Then in January of 2008 I couldn't raise either arm at the shoulder. So I went to urgent care and was sent home with pain killers and muscle relaxers and told to see my primary care. Then it started in my hands, my left thumb blew up to twice it's size, my PA gave me prednisone which helped greatly, A month later the right thumb blew up and for good measure the left again. My PA wasn't sure I had RA because she thought my symptoms were always tendon related. However I was referred to a rheumatologist in March of 2008 and 3 appts. later (May 2008) I was told I have RA and methotrexate or plaquinil were my only choices. Fortunately I had been reading a book on autoimmune diseases that had a couple of paragraphs referring to an antibiotic protocol. When I questioned the rheumatologist about this option he said no! Shut me down cold and became very rude. So the next day I went crying to my PA and she agreed to run more tests because I wasn't having the typical arthritic symptoms. (Lyme disesae, thyroid, epstein-barr, polymyalgia, polymyositis, and I'm sure there were more. All came back negative.)
In the meantime I starting searching for the antibiotic protocol, found the “New Arthritis Breakthrough” and when I read page 173 my head imploded, this was me.
I took this info to my PA and she was more than willing to start me on minocycline. Of course niether of us knew what we were doing, I finally wrote the RBF and got the name of a doctor in Riverside, CA, an hour from my home. YEAH. This was August 2008.  I made my appt for January 2009. ( I waited to switch insurance in Oct and deductions are by the calendar year, so in pain I waited.) By this time I had all over body pain probably started by the minocycline, which I had stopped taking in September so I would be “as is” for my first appt in January.
January of 2009 met AP doc, ran lots of tests, x-rays etc. February starting on Avemar and supplements, Dr. F wanted to rule out vasculitis before started me on minocin. March confirmed RA, finally started minocin!! Yeah! and more supplements. March and April where hell months, major herx.  Again my tendons seem to be the most affected. I have fluid pockets over my hands/wrist areas. 
I'll cut to the chase of currents meds  and supplements as of this writing September 19, 2009 Dr. F has me on minocin 100mg twice a day, 5 days a week. Zithromax 500mg 3 days a week, 6 mgs prednisone every day. Supplements include Avemar everyday with fish oil, bone support, joint support, coq10, vit.D, probiotics, inflavinoid and oxygenics.
Meanwhile I take 20 mgs Lotensin daily for blood pressure and last week started on 25 mgs HCTZ (diuretic) also for BP. I have noticed since starting the HCTZ my leg swelling has gone down completely but my tendons, especially in my hands, feel more contracted.

Well, that's my story. I'm sure I left out a lot but I think I hit the “lowlights”.

Thanks for listening,
Char  (short for Charlene)

[Char M]

Just wanted to update a bit. I am feeling Great! (July 21, 2011) I am 2 years and 4 months on AP and my blood levels are approaching normal and I can’t wait to see Dr. F. in October, I know they will be even better. I have been able to ween myself off all pain meds. Yes I still have some mild inflammation mostly in the hands, wrists and feet, but for the last 6 months I have been able to exercise for 30 minutes 4-5 days a week! ( I use a stationary bike or treadmill )

This is a longer slower process and I highly encourage anyone/everyone to stay the course. I know there is still a way to go and that there are and will be bumps in the road ( see my post in general discussion “Lost my sense of smell” ) but I know I am heading into remission.
There are two things I say to my family:
1) “I’m not as bad as I was, not as good as I could be, but each day I am moving in the right direction!”
2) In reference to my aches and pains: “These are observations, not complaints!”

Just sending words of encouragement and thanking everyone for the same. A big thanks to all the volunteers past and present. The wealth of knowledge on this site is incredible!
Thanks,
Char

[Author]

Posts