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from the blog:
“Anyone who has followed this blog probably knows that I thought that I had Rheumatoid Arthritis (RA) for over 9 years. I have always had some doubt about what was going on with my body and the effectiveness of the treatments the doctors were prescribing. But I trusted my doctors more than I trusted my instincts. My story is a cautionary tale for anyone who has been diagnosed with an autoimmune disease.”
Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.
I am glad you told your story. It was very nice to read. I have RA and I think I might get a lyme test just in case, altough I have never seen a tick since I was a little kid. I am glad you trusted your instinct, we all need to do that. Doctors are people just like us, and we need to stand up for ourselves, I am inspired by your story. I don't care if my rheumatologist thinks I'm crazy, I'm in pain, so what do I have to loose, right, a litttle pride? I'm willing to loose all my pride if I just can get feeling better.
Take care, thanks for posting your story.
Thanks for posting this lady's blog, Suzanne. This is exactly what many here have experienced and I'm sure can relate to. Most sadly of all, this lady not only lives in an endemic area, but had a history of repeated tick bites and tested CDC positive numerous times….something that isn't easy to acheive for half of all chronic Lyme patients with compromised immune function.
Although she has a all's-well-that-ends-well with her story, the loss of 9 years of quality of life and unnecessary suffering due to all this chronic Lyme denial is just unfathomable and very, very sad for her and her family. Unfortunately, it's the state of play right now and it doesn't bear thinking about all the thousands in the same boat who aren't as fortunate to get positive reads on their tests and may never make the connection.
Peace, Maz
[user=2713]Valsmum[/user] wrote:
I am glad you told your story. It was very nice to read. I have RA and I think I might get a lyme test just in case, altough I have never seen a tick since I was a little kid. I am glad you trusted your instinct, we all need to do that. Doctors are people just like us, and we need to stand up for ourselves, I am inspired by your story. I don't care if my rheumatologist thinks I'm crazy, I'm in pain, so what do I have to loose, right, a litttle pride? I'm willing to loose all my pride if I just can get feeling better.
Take care, thanks for posting your story.
Valsmum,
You could not have phrased this any better. People just need to get over harboring any ill-will towards their doctors that “missed it”, and get on with the business of finding answers to their illness. Follow your gut instincts and do due diligence and demand testing any which way you can get it and then seek out the appropriate doctor that is willing to work with you. Whining is a waste of precious time and many of us don't have time to waste before we hit the point of no return.
Take care…..kim
[user=40]Kim[/user] wrote:
You could not have phrased this any better. People just need to get over harboring any ill-will towards their doctors that “missed it”, and get on with the business of finding answers to their illness. Follow your gut instincts and do due diligence and demand testing any which way you can get it and then seek out the appropriate doctor that is willing to work with you. Whining is a waste of precious time and many of us don't have time to waste before we hit the point of no return.
Take care…..kim
Amen! And don't think people wearing white coats have all the answers. They are human just like us and they can't retain all the information that is out there. We only have to learn about our disease. They have to try to know the latest on every disease.
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