My name is Jo-Ann; 10 years ago I was diagnosed with RA (rheumatoid arthritis) shortly after testing positive for Lyme disease and inadequate antibiotic treatment for Lyme disease. Sounds a little nutty. I know. If I hadn’t lived this nightmare I wouldn’t have believed that in the greatest country on the planet, with the smartest doctors in the world something like this could have happened. But it did.
In late summer, early fall of 2000 for no apparent reason my ankle started swelling and hurt. I went to a walk in clinic where they took X-Rays of my ankle and could not find anything wrong with my ankle. Stumped, the doctor that examined me suggested anti-inflammatory medication and gave me an air cast for keep the ankle immobilized and sent me on my way. After about a month the ankle did seems better, but then my knee started to bother me. Before I knew it my wrists were swelling and hurt.
One day after complaining about my wrists, my husband Eric said “Maybe you should get tested for Lyme.” We live in rural RI and certainly ticks are here, but it just hadn’t occurred to me that I might have Lyme disease. Once he said the words, it made sense. I really wasn’t all that concerned about Lyme disease because I figured all I needed was a few weeks of antibiotics and I would feel better. I could not have been more wrong.
I went to a walk in clinic for the Lyme test. A few days later, the doctor called to say that I tested positive for Lyme disease. He was calling in a prescription and I would feel better in no time. The doctor prescribed a Z-pak (Zithromax). After taking the medicine as prescribed and giving ample time for it to work, two weeks later I returned the clinic worse than I started. Another Z-pak was ordered and the doctor was sure that I would feel better. That didn’t happen.
At this point not only were my wrists swollen but now my ankles were swelling and walking was becoming difficult. When I returned once again to the clinic, the doctor said to me, the problems that I was having were beyond his level of expertise and so he wanted to send me to a specialist. He said that he could send me to an infectious disease specialist or a rheumatologist. He felt that a rheumatologist was the best way to go because he could treat me for Lyme disease and handle the obvious joint problems I was having. He called and set up an appointment for me and sent me on my way.
The rheumatologist seemed nice. He asked a lot of questions, but when he heard that my mother had been diagnosed with rheumatoid arthritis 20 years before, the interview ended. It was as if the minute he heard that information, there was no need to question further. He had his diagnosis even though he hadn’t even examined me at this point.
After the examination that basically involved range on motion movements and feeling my joints, the rheumatologist announced that I had RA (rheumatoid arthritis). I asked “What happened to Lyme disease?” He said that it was more than likely a false positive test result. He said that I need to start taking steroids and methotrexate and Vioxx to avoid damaging my joints because “We don’t want you to end up in a wheelchair. Do we?”
All I wanted was to feel better and I have to be honest, the talk of a wheelchair scared the daylights out of me. So I took the medication and we scheduled a follow up appointment and some blood work.
After about a week on prednisone, I was feeling wonderful. I was starving all the time, but who cared, I was moving. And it didn’t hurt. I had a baby at the time and the simplest of tasks, like bathing and changing him had become so difficult. I figured this doctor must be right because I was feeling better. I still had this nagging doubt about this being RA in the back of my head, but I was feeling better and I’m no doctor. So I dropped the issue.
After the better part of a year had gone by the rheumatologist wanted to start weaning me from the prednisone. This proved to be a very painful process. The doctor said that as soon as my body adjusted to the lower levels I would start feeling better. That never happened. Because of the side effects, the prednisone needed to be taken out of my drug regimen. Once it was out of my system, I never felt good again. We increased the methotrexate, that didn’t seem to make any difference. Then he increased the Vioxx which actually seemed to help a bit.
And then the FDA took Vioxx off the market.
From that point on I had steroid injections into various joints and the methotrexate was increased once again.
I just wasn’t seeing any real improvement. The doctor told me that the first two years was went the disease was most active and we were hoping to keep the disease from progressing, not worrying about getting better.
I learned to accept that this day was as good as I was going to feel and to be grateful for it because it could be worse.
Eventually I decided that I wanted more that this and I started looking for a new rheumatologist. Each time I told my story and each doctor told me that they would continue with what the first doctor had prescribed. Doctor after doctor had seen my records and saw no reason to disagree with the first rheumatologist; he was after all well respected. Each doctor seemed aware of Lyme disease, but they told me antibiotics would have killed the Lyme so it must be RA.
I ended up finding a rheumatologist that was supposedly a Lyme specialist. I thought if anyone could help me, she could. She listened to my story and told me that she had had some luck with adding plaquenil to the treatment and why didn’t we see if that helped.
After several weeks on plaquenil, I started to see some improvement. I hadn’t seen any improvement in years so this was hopeful. She couldn’t tell me how or why the plaquenil was working, but at that point I didn’t care, I was just happy to be feeling a little better.
I stayed on plaquenil for several years. She decreased the dose but never discontinued it.
Over the years I had been bitten by ticks from time to time. I would test positive for Lyme, take doxycycline for a month, fee crummy for a while and not really have any huge issues. No one at any time told me not to take the immune-suppressing drugs while treating the Lyme infections.
In the spring of 2009 I was bitten by yet another tick. This time I asked the rheumatologist for a Western Blot, mostly because I had the appointment and it was convenient.
The Western Blot came back positive. My rheumatologist told me to stop taking the methotrexate and to take doxycycline for 8 weeks. I followed her instructions and after feeling much, much worse I actually started to feel like myself again.
My old self that is.
I remember going about my business, doing everyday ordinary things when it suddenly struck me that this is what normal feels like. I remember this. And then I began to cry. I knew that my misgivings about the possibility of this being Lyme were not unreasonable as the doctors had made me believe.
Shortly after the antibiotics ran out I started feeling worse. Not only did I have joint problems, but now I had nervous systems issues as well. I started doing research about Lyme disease and things started adding up. The ringing in my ears that they blamed on Advil, the migraines, the dizziness, the extreme fatigue, the memory problems, the trouble ready and writing I was having, the shooting pains in my feet… Why was all this adding up for me but not the doctors?
I went back to the doctor where she ordered another Lyme test and a myriad of other tests: MRI, X-Rays, blood tests, the list went on and on.
Less than a week later my primary care doctor called to say that my Lyme test came back positive. I checked to make sure that we were talking about the second Lyme test. When she learned that I was not on antibiotics, she told me that she would call the rheumatologist and get back to me. I wasn’t about to wait for that call so I called the rheumatologist myself. She insisted that it was not Lyme disease. It was what she called a cross reacting protein. And then she said that it just didn’t make sense. I shouldn’t test positive for Lyme.
At this point I was at my whit’s end. I called my primary care doctor back and asked to be put on antibiotics. She said that she didn’t know if I had Lyme or not but if I got better on the antibiotics then I probably had Lyme and if I didn’t then it probably wasn’t. Either way a couple more months on antibiotics wouldn’t hurt and we would continue testing in the meantime.
Relieved I began the next course of antibiotics and started to feel better. Unfortunately shortly after stopping them I started feeling worse again. When the rheumatologist, after subjecting me to more tests than I care to mention, could not give me a reasonable answer as to why this was happening if it wasn’t Lyme disease, I decided I needed to find an expert in Lyme to answer my questions.
After a two hour meeting and exam from a LLMD (Lyme Literate MD) I was diagnosed with Lyme disease and the real healing began.
My husband and I wanted to start this site to share our story and hopefully to hear yours. After all Lyme does not only affect the patient but also the ones that love them. When I was first diagnosed there wasn’t a lot of information out there. And maybe if I had read someone’s story about being misdiagnosed it would have made a difference in the choices that I made.
Our hope is that in sharing our experiences that we will help others fighting the disease. We also hope to raise awareness about Lyme disease, share information that we have learned and hopefully raise some money for research.
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