Monday, March 16, 2009

CFS and Lyme

I'm pleased to report that I'm feeling better than I expected to at this point. We had a very nice weekend with my mom and her husband, played lots of games, and enjoyed the soccer game in Philly Saturday night (except I was so overstimulated I couldn't get to sleep that night!)

I re-started antibiotics for Lyme disease last Wednesday (I've taken two other rounds of antibiotics over the past 6 months). I expected another severe herx (initial worsening), but it's not too bad this time. For about 2-3 hours after I take a dose of doxycyline, I experience aches and knee and hip pain, but the rest of the time, I've been feeling pretty good. So, I guess I'm making progress and there's a lot less Lyme left in my body this time around - hurray! Now I'll just need to be sure to stay on antibiotics long enough to completely eradicate it.

Lots of people have been asking me questions about Lyme: how I can tell what's Lyme and what's CFS, how I know I haven't had Lyme all along, etc. These are really good questions, since Lyme and CFS are so similar and both are so difficult to diagnose properly.

I addressed some of these questions in an earlier post on Lyme and CFS, during the early stage of my treatment last fall.

I know it's different for everyone, but I knew immediately that I got Lyme last July because I had sudden, severe knee pain (and Lyme is practically an epidemic here!). Plus, we had just come home from a 3-week trip that included lots of camping and hiking. Joint pain has never been a part of CFS for me, and my older son also had knee pain when he got Lyme twice before. Other Lyme symptoms, like exhaustion and flu-like aches, are exactly like CFS. For me, though, I knew I'd been doing very well lately and that crashes were more rare and typically lasted only a day or two after exertion. So, when I suddenly went from doing pretty well to feeling crashed every day - and then the knee pain started - I was certain I had Lyme. I think it's all about knowing your baseline...unless of course you've had Lyme from the beginning (my earlier post explains why this wasn't true for me).

Interestingly, I have still never had a positive test result for Lyme, even when a Lyme specialist sent my blood samples to Igenex, well-known as the best lab for Lyme testing in the U.S. Many doctors believe that the only truly accurate "test" for Lyme is to try doxycycline (an antibiotic used to treat Lyme). If symptoms improve briefly and then get much worse, it's Lyme (the getting worse is a herx or die-off reaction); if there's no change at all, it's probably not Lyme. After a couple months of herx, my symptoms (the knee pain and the "new" crash symptoms) went away completely and I felt just like I had before I got Lyme last summer. Unfortunately, I just stopped antibiotics too soon, and there was still some Lyme left in my body, so hopefully, this round will take care of that.

For anyone with CFS, I would highly recommend you consider Lyme and its co-infections if you have joint pain and/or severe cognitive dysfunction (common in later-stage Lyme) and you have gotten worse over time instead of better. You can start with the standard tests, but false negatives are common, especially when you have a messed-up immune system. Here is an excellent article on a Lyme blog explaining 27 reasons why false negatives occur. If you have the symptoms but test negative, you might want to talk to your doctor about a trial of doxycycline.

Something else to be aware of is that there are about a half dozen other tick-borne infections that commonly occur with Lyme, often referred to as Lyme co-infections. These also cause symptoms very similar to CFS (one even causes exercise intolerance) and require different treatment. There are tests for all the co-infections - again, not 100% accurate but a good starting point. In fact, I'm beginning to suspect that Jamie may have a Lyme co-infection, mycoplasma. He tested positive for it a year ago, and the Infectious Disease specialist wondered why. I recently discovered it's a Lyme co-infection, and Jamie has had Lyme twice. I'm going to look into this with his doctor.

Want to learn more about diagnosis and treatment? The Lyme Disease Foundation offers extensive information on Lyme and all of its co-infections. The International Lyme and Associated Diseases Society is one of the best sources of accurate information on Lyme and co-infections, including several different very detailed guidelines on diagnosing and treating Lyme and co-infections.

I hope this helps to answer some questions.


Laura (aka Mom) said...

Hi Sue,

Thanks for all the information. What caught my eye is when you talked about Jamie having mycoplasma. Jessica's tested positive for mycoplasma too...

I'm glad you're feeling better so soon and that you had a good weekend!
Take care,

Tony said...

Hi Sue

You mention about the knee pains. Well, I came across an interview on a BBC website where a lady gave her account via radio.

If you listen to the second radio interview (I think), some guy rang up and mentioned the chronic knee pains due to Lyme 'feasting' on magnesium in the cartlidge.

The link is:

Hope this helps,

Tony Frost (UK)

Diane J Standiford said...

Whew, glad you are feeling better. Thx for the links.