LivingRheum

As some of you may have heard, I just recently found that I was misdiagnosed with rheumatoid arthritis (RA). I have Lyme Disease.

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.

Let me start by saying that we live in rural Rhode Island. We have a small 3/4 acre wooded lot. All sorts of wild life can be found in our yard at any given time and there is no shortage of deer that visit our property. We moved out here to raise our family in a quiet, serene place with good schools and friendly neighbors. Unfortunately, with the good comes the bad, and the deer carry ticks that carry Lyme Disease.

Each member of my family at one time or another has had Lyme Disease. It is not uncommon to be outside for only a few moments and pick up one of the poppy seed-sized ticks. For the most part we have all either tested positive with Lyme Disease or the tick if we were able to keep it tested positive with the disease.

9 years ago I had been bitten by a tick. At the time, I was tending to my newborn son, and had two older boys to watch over as well. In prior exposures to the disease, I had felt “flu like symptoms” and that was my cue to get tested. I don’t know if it was adjusting to three boys and 2 jobs or if I was just too busy to notice, but I really don’t remember any “flu like symptoms”.

It started with my ankle. It hurt and was swollen so I went to the urgent care center where they X-rayed it and told me they could find nothing wrong with me. The doctor prescribed an anti-inflammatory and gave me and air-cast. We were going with the assumption that I must have sprained my ankle even though I couldn’t remember doing anything out of the ordinary.

The swelling did eventually go down on my ankle but shortly after my knee on the opposite side started swelling. Ice, rest, and ibuprofen seemed to help with the swelling in my knee. Then, my wrist on my left hand began to swell. My husband and I were discussing the weird joint issues I had had over the previous few months when he suggested that I go get a Lyme test. I thought that it couldn’t hurt, so off I went back to urgent care for a Lyme test. The Lyme test came back positive and the doctor gave me zythromax.

Unfortunately I did not get better after taking the antibiotics, so I went back to the same doctor who gave me another course of the same antibiotic. When after finishing the second course of medication and I was not improving, the doctor said to me that this was beyond his level of expertise and I needed to see either an infectious disease specialist or a rheumatologist. He felt that I should start with a rheumatologist because if it was Lyme or something joint related a rheumatologist would be the best choice. He gave me the name of a rheumatologist and sent me on my way.

The rheumatologist seemed nice; he listened to my story and took a medical history. It may be my perception of what happened next, but it seemed to me that the minute he heard that my mother had rheumatoid arthritis (RA) his mind was made up. He told me that more than likely it was RA. He examined me and put me on prednisone immediately. When I asked about the Lyme he said that it was very unlikely that I had Lyme and that he was fairly certain it was RA. He told me the steroids should get the inflammation under control and ordered some blood work.

The blood work came back and showed that I was positive for RA. What I did not know then that I know now is that an active infection like Lyme Disease can affect the test results for RA.  He gave me a prescription for methotrexate, talked to me about Enbrel, and sent me home with a handful of pamphlets.

To be completely honest, I never felt comfortable with the diagnosis, but I somehow talked myself out of trusting my instincts by comparing his knowledge on the subject with mine. His practice was a teaching practice with Brown Medical School and I felt like he should know more than me on the subject. I really trusted that he knew what he was talking about. I have beat myself up for not going with my gut many times over the years on this topic.

Over the next several years I just seemed to get worse. Every time I brought up the fact that I was not really improving he would tell  me that the first several years with the disease are the worse, when the most damage occurs and that we needed to increase the medication. For a while he really had me scared. He would say things like “We don’t want to see you in a wheelchair, do we?”. After way too long I decided to find a new rheumatologist.

I took my time looking for a new doctor. One I went to yelled at me when I told him why I was looking for a new rheumy. Turns out he was friends with the one I left. I finally decided on a rheumatologist who I was told was well versed in Lyme disease.  She had plenty of posters on the walls of the office with picture of both damaged joints and Lyme disease bulls-eyes. I discussed my story with her and she felt I had rheumatoid arthritis as well. She decided to add Plaquenil to the cocktail and that did seem to improve how I felt. The disease seemed to ebb and flow with the increased mtx and plaquenil combination. There was never a time when I didn’t feel sick.

Over the years I have had some symptoms that no doctor has been able to  explain. I have had extreme sensitivity to light and sound. It’s like having a migraine without the headache. I have ear pressure so it feels like I am in an airplane all the time. I have also had other more traditional RA symptoms (i.e.  joint swelling, pain, fatigue)

Last summer everything came to head when Kevin had a bout of the swine flu and I had to go off the methotrexate. I had to take antiviral medication for 3 weeks, and immediately following that I got bronchitis and was on antibiotics for two weeks, followed by 3 more weeks of antiviral medication because Nathan got H1N1, and finally 6 weeks of antibiotics because I got bit by another tick. I tested positive for an active Lyme infection and stayed off the mtx for another 6 weeks. After 14 weeks off methotrexate I felt surprisingly good.

The doctor told me to start back on the methotrexate, and being the dutiful patient I did what I was told. After 2 doses of the methotrexate I felt like I was back in Lyme hell. I went to the doctor and I told her I was not going to take any more mtx. She order more tests, including a new Lyme test. A few days later my primary care doctor’s office called to tell me that I tested positive for Lyme and I needed to start antibiotics. I was surprised that I had not heard from the doctor that ordered the test, so I called my rheumatologist office to find out what was going on.

She told me I did not have Lyme disease. She said that it was a cross reactive protein and ordered more tests. I again brought up the long ago Lyme test that started this RA nightmare and the look on her face scared me.  She looked frightened. She claimed that there was nothing from the previous doctor that mentioned Lyme disease. ( I know now that this was untrue because when I requested copies of my medical records from her office the previous rheumatologist did sent his notes on the Lyme and that he felt it was a false positive.) Over the next several weeks as I felt worse she ordered more and more tests, she managed to rule out quite a few different ailments and still could not explain the Lyme results. Finally, I got tired of being poked and went to see my primary care physician and asked her to put me on antibiotics. She agreed that there was no harm in trying antibiotics and if I felt better than it must be Lyme.

After 2 weeks on the antibiotics I started to feel normal again. After 3 weeks I felt better than I had in years.  The inflammation was almost gone. I walked with a spring in my step. I felt really really good. One day I was going about my daily routine and I stopped myself in mid-stride because it was as if I had been in the situation before. It was the most beautiful deja vu that I have ever experienced. As it occurred to me what I was reliving I began to cry. I felt the way that I did BEFORE. Before the rheumatoid arthritis diagnosis. It was as if time had melted away and that I was the old me, the healthy me. That moment will stay with me forever.

In that moment everything changed for me. I decided that I was going to investigate Lyme disease. I wanted to find out if this had happened to anyone else. What I found was that everyday people are diagnosed with chronic autoimmune diseases that really have Lyme disease because of the ignorance of some of the medical community about what Lyme Disease is and what it can do.

I took my time and thoroughly investigated several doctors. I knew after doing my research that I needed to find a Lyme Literate MD (LLMD). I got references and asked questions about each one. I decided that I wanted the opinion of someone who was respected in dealing with Lyme not only by his colleagues, but also by his patients. After quite a lot of research I found the doctor I felt comfortable with. It took me 2 1/2 hours to get to his office but I didn’t  mind the drive if it meant that I would get some answers. I figured if he told me that I did not have Lyme disease, I would believe him, and I would move on from there. I needed to know once and for all if I had Lyme disease or something else.

I spent 90 minutes with this doctor discussing the past nine years of my life. Every tick bite, every treatment, everything. When all was said and done, he said to me that it was no surprise that I did not feel better after the original doctor put me on a Z pack for 5 days and then repeated the process; it would not have done anything to fight Lyme Disease.  He felt very strongly that after I described all of my symptoms and heard all my treatments that I have Lyme Disease and never had Rheumatoid Arthritis.

I left the LLMD’s office overwhelmed. I could not hold back the tears. 9 years. 9 years that could have been so different. 2 of my children don’t even know what I was like before all this happened. I am angry and sad. I want as many people as possible to know my story because it could be there’s as well. I am not the first person to be diagnosed with Rheumatoid Arthritis that has Lyme disease and I am certain not to be the last.

My new doctor offered no guarantees. He told me that this is going to be a long, hard battle. The very last thing you want to do to treat Lyme disease is to weaken the immune system. We have a lot of work to do. I was prepared for that.

Today I have something now that I did not have 10 days ago.

Hope.

My final thought to anyone that ever had any doubt about whether or not they had been “cured” from Lyme disease,  or had concerns about their current autoimmune disease diagnosis is to trust yourself, trust your instincts, and if it feels wrong it probably is.

As a side note, as of this writing I have been on antibiotic therapy for ten days. The results are that at least half the inflammation if gone from my joints. I don’t need any more proof than that.