Lyme Disease & CFS

I just came from my doctor's appointment and wanted to share what's going on with me, as well as some resources on Lyme Disease. I thought I knew a lot about Lyme, but I'm learning there's a lot I didn't know. I'm very fortunate to have met someone online who just happens to live nearby and share my doctor and has struggled with Lyme and other tick-borne infections in herself and her son for many years. She's also been a Lyme support group leader for five years. She's been in invaluable source of information and support.

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.
  

Some people have asked me whether I might have had Lyme all along, but for me, it was obvious when I recently got Lyme because the knee pain started very abruptly and was a new symptom. Also, through various therapies, medications, and carefully monitoring my activity level, my symptoms have improved over the past 6 years. Most recently, due to anti-virals and low-dose naltrexone, I was actually doing very well for the first 7 months of this year. If I had had Lyme all along, I would have gotten worse, not better. Besides, I was mis-diagnosed with Lyme when I first got sick 6 years ago and had tried 90 days of antibiotics with absolutely no change in my symptoms at all.

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

The plan for me is to continue doxycycline for another month. If I'm not better after another week, my doctor is going to add on another antibiotic, on the assumption that another tick-borne infection may be present. She's also given me lab slips to have additional blood tests done for common Lyme co-infections, though she recognizes that the tests are not always accurate (which is why she'll go ahead and treat anyway). So, hopefully, I'll continue to improve, although I'll admit that I'm very scared that Lyme may cause long-term worsening of my CFS. I just have to wait and see.

Resting and waiting...something I should be used to, right?