I’ve always believed there has to be an underlying cause for fibromyalgia. Over the past few months, I’ve interviewed a number of researchers who posit different theories on what triggers fibromyalgia. Brain inflammation, viruses and an endocannabinoid deficiency are just a few of the reasons they’ve cited.
Since my fibro diagnosis, I’ve repeatedly said to my family and fibro friends that it feels like I’m missing something – that there’s a reason I’m not getting better even though I’ve committed myself to recovery.
I just couldn’t figure out my missing link. But yesterday, I may have finally found my answer. I was diagnosed with chronic Lyme disease.
When my mom was alive, she used to tell me to always get copies of my medical records. Had I heeded her advice, I would have found out that I had Lyme several months ago. When I was working with my fibromyalgia specialist, I had him test me for Lyme because I thought I might have been exposed. I had heard that a good number of people with fibromyalgia actually have undiagnosed Lyme. Lyme is misdiagnosed so often and mimics so many other conditions that it’s nicknamed the great imitator.
My general practitioner and rheumatologist have tested me for Lyme using the standard testing available in most doctors’ offices. Both times, my tests came back negative.
The standard tests are extremely unreliable. Some estimates say they pick up new Lyme exposure in only 50 percent of cases. And for those of us who were exposed to Lyme months or years ago, the chance of those tests picking up our Lyme infection is pretty much nonexistent because the bacteria suppresses the body’s ability to make antibodies.
Many in the Lyme community recommend iGenex testing. It’s more reliable than the tests offered by LabCorp, Quest Diagnostics and similar labs, but it’s also not covered by insurance, and it’s expensive ($200-$300 for the basic Lyme panel).
Last October, my former fibromyalgia specialist ordered the basic iGenex testing as part of my lab workup for his program. I had the test, and a couple of weeks later his assistant emailed me to say I’d tested negative. At that point, I figured Lyme had been ruled out, and I moved on to exploring other causes.
Fast forward to a couple of weeks ago … I had asked my specialist to send me copies of all of my labwork because I was gathering my medical records to apply for my medical marijuana license. One evening, I decided to flip through my records to see if I saw anything useful. My mom had also told me sometimes you’ll see things on your labwork that your doctors won’t mention.
As I looked at the three-page iGenex report, something didn’t look right. The overall test result was negative, but I’d tested positive for several Lyme bands, and several others were marked “indeterminate,” meaning the test had reacted but not enough to conclusively say it was positive.
My knowledge of chronic Lyme is limited, but I had written a news story about it last year, and I remembered a Lyme support group leader had told me that if you test positive for any of the bands, then you still may have chronic Lyme even if you don’t meet the U.S. Centers for Disease Control’s guidelines.
I sent my results to the support group leader I’d interviewed previously and another acquaintance whose entire family has Lyme. She sent my results to a second support group leader. All three said it looked like I had Lyme and advised me to see a Lyme literate medical doctor (known as an LLMD in the Lyme community) as soon as possible.
My appointment was yesterday, and the doctor confirmed what my Lymie friends already had told me: Based on my test results and my symptoms, I have chronic Lyme disease.
Of course, one of my first questions was, “So does this mean I don’t have fibromyalgia?” The doctor says I still have fibromyalgia, but it’s possible that Lyme is the underlying cause for my symptoms, and that once I’m treated, my symptoms may improve. Here’s hoping…
So what does this mean for FedUpwithFatigue.com? I don’t plan to change much. I will still write about fibromyalgia and ME/CFS, but I’m sure I will also be adding some information about Lyme because that will be part of my journey now.
If you compare the symptoms of Lyme and fibromyalgia, there’s great overlap. I would bet every dollar that I have in the bank that some of you reading this right now have chronic Lyme and don’t know it. So, I’m going to treat this new diagnosis as an opportunity to educate and hopefully help others. In the coming days, I’ll publish a post with more information on chronic Lyme, how it’s diagnosed, testing options and other information for those of you who would like to go through the process of ruling out chronic Lyme as an underlying cause for your symptoms. Stay tuned.