As of today, I have been on antibiotics (doxycycline) for a month to treat the Lyme. I've improved a little bit during that time, though not nearly as much as I had hoped for. I still have knee pain - still severe at times, especially in the evenings - and my CFS symptoms are still worse than they were before Lyme.
One thing I've learned is that Lyme and CFS are even more similar than I previously thought. My new Lyme friend explained to me that Lyme often causes viral re-activation - just like CFS! Because of this, many Lyme patients take anti-virals, like Valtrex or Famvir, in addition to antibiotics. In fact, after my first two weeks on abx, I felt worse than ever. When I learned about Lyme causing viral activation, I filled a prescription I had been holding for Famvir (my Infectious Disease doctor suggested I try it after I finished my 18 months of Valtrex on August 1). Voila! I felt much better within hours of starting the anti-viral.
I thought that joint pain was an early symptom of Lyme disease, but I've recently learned it's actually a symptom of Stage 2 or 3 Lyme disease. Here's the NIH summary of Primary Lyme Disease, Stage 2, and Stage 3. The odd thing is that knee pain was my first symptom. Normally, a person with Lyme first experiences flu-like symptoms. It's easy to see how this could be confused with the flu-like symptoms of CFS, but I actually felt great in the weeks before my knee pain started. I can only guess that my CFS-messed up immune system made me respond differently and obscured those typical early signs of Lyme.
In fact, it can be extremely difficult to differentiate between CFS and Lyme, which is why many people are misdiagnosed. To make matters even more confusing, it is not only possible but fairly common to have BOTH Lyme and CFS since Lyme is a known trigger for CFS. I've learned I'm no expert, but here are a few things that can help to distinguish between Lyme and CFS:
- CFS often (but not always) occurs in a unique relapsing-remitting pattern, where you feel good on some days but even mild exertion can trigger a crash.
- CFS often includes a recurring sore throat and/or swollen glands
- CFS is partly defined by exercise intolerance
- Lyme will not get better without treatment - it will get progressively worse
- Lyme responds to antibiotics
- Although joint pain is one of many symptoms that can be a part of CFS, if joint pain is one of the most prominent symptoms, Lyme should be considered.
So, to address some of the questions I've been getting lately, here are some resources for those who want to learn more about Lyme, thanks to my friendly Lyme expert:
- Because the region where I live has a very high incidence of Lyme, a local Lyme Association offers lots of great information, including a General Information booklet that can be downloaded at this page.
- The International Lyme and Associated Diseases Society website offers information and resources on Lyme and other tick-borne infections.
- Dr. Holtorf in California treats CFS and has several articles available on his website about Lyme.
- A recent newspaper article about the difficulty of diagnosing Lyme
- An article on the rising rates of Lyme on Nantucket
Resting and waiting...something I should be used to, right?