Monday, October 13, 2008

Lyme Disease Update

Sorry I didn't have time to write again last week as I'd promised. My husband is in Europe on business for a week and a half, so I've had my hands full taking care of the house and kids. In fact, I had to just sacrifice today to the couch and bed. By 8 am, I was already exhausted from our busy weekend!

I wanted to give you an update on my Lyme treatment - hopefully, my last Lyme update. I saw my doctor last week, and we are hopeful that I'm coming to the end of my ordeal with Lyme. I finished one antibiotic (Zithromax) and have another week left on my two-month supply of the other (doxycycline). More importantly, I'm finally feeling good again. I've now had about two weeks of feeling quite good - seems like back to where I was earlier this year, before Lyme struck. I haven't had any knee pain at all in almost 3 weeks. My doctor is not 100% convinced that we have completely eradicated the Lyme bacteria - I never did test positive on any of the tests run - but she said we'll see what happens when I finish the doxycycline. If my symptoms come back, I'll need to go back on antibiotics.

As a quick recap for those who haven't been following my blog the past few months....
I have had CFS since March 2, 2002. I got Lyme this summer; my symptoms began in mid-July. Although CFS and Lyme often have very similar symptoms, I am quite sure my Lyme was a recent infection because:
  • I have never had any joint pain before with CFS. When I got Lyme this summer, I had sudden, severe knee pain.
  • I am one of the fortunate few with CFS who has never had severe cognitive dysfunction, only mild symptoms, like difficulty with word-finding and brain fog when I'm badly crashed. Long-term Lyme affects the nervous system and causes severe cognitive problems.
  • I was actually mis-diagnosed with Lyme back in 2002 when I first got sick. I took 90 days of doxycycline at that time, under the care of an Infectious Disease specialist, with absolutely no effect at all.
  • My CFS has improved quite a bit over the past 6 years, especially in the last year with anti-viral treatment and low-dose naltrexone. Lyme left untreated with antibiotics would get progressively worse.
I had no bulls-eye rash with Lyme (only a small percentage of people do) and was not aware of a tick bite (again, many people with Lyme aren't), but we spent 3 weeks outdoors camping and hiking in June and July on our vacation. Besides, a recent CDC study showed that Delaware had the highest per capita rate of Lyme of all 50 states from 2004-2006. It's almost an epidemic around here.

The first signs of Lyme are usually flu-like symptoms, but this wasn't true for me. I felt fine until my knees suddenly started to hurt. Joint pain is considered a sign of Stage 2 Lyme Disease. My 14-year old son has had Lyme twice before, and his first symptom was also knee pain (at the same time as flu-like crash symptoms). So, I wonder whether CFS's immune system abnormalities mask those very early symptoms of Lyme.

My knees had hurt for about a month when I started antibiotics, so the Lyme bacteria had a chance to possibly penetrate my tissues. This is part of what makes Lyme difficult to treat, unless it is caught very early, and also what makes the blood tests for it so inaccurate; the Lyme bacteria does not stay in the bloodstream but penetrates tissues and "hides" there.

All in all, I took doxycycline for 8 weeks and Zithromax for 3 weeks. Hopefully, that will be it for me. We'll see what happens when I finish the doxy next week. For now at least, I'm feeling much better and have been able to resume my "normal" life. I never thought I'd be glad to "just" have CFS!

More information on Lyme and CFS here.


me/cfs warrior said...

That's good news about the lyme! I wanted to say thanks for stopping by my blog and offering me some hope. It helped. I'm trying to decide whether or not to go on valcyte to treat viruses.

Knittah said...

I am SO glad you are finally rid of the knee pain and feeling better! Don't feel you "sacrificed" today to the bed and the couch. Resting is taking care of yourself, especially when you are outnumbered for a week and a half!

Sue Jackson said...

Knittah -

Thanks for reminding me of the right mindset! You're absolutely right about the importance of rest, and I usually do try to remember that. After resting most of yesterday and taking a 2-hour nap, I'm doing much better today.


Sherry said...

Thanks for your "thinking out loud" with your Lyme symptoms. All of our doctors, along with myself, have ruled out lyme for us. One doctor finally tested my son last year and it came back negative - doctor thought we could still try the antibiotic treatment for it, but we just weren't convinced. We've suffered no joint pain and our brain fog is lessening as our gut/digestion improves. Isn't it nice to be at a place where we know more about what is happening?

Mckay K said...

Sue, I am glad to learn that you are feeling better.

I am the #1 advocate for REST REST REST! Get as much of it as you can. It seems to fuel my body for the next adventure.

Stay well

Renee said...

I am so glad to hear you are improving so quickly! Yahoo! You have had quite a week ~ be kind to yourself now as you rest and restore you body.