Lyme Again?

I think I may have Lyme disease again. I've been trying not to jump to conclusions, but I think it's time to face facts and start a trial of doxycycline to test the theory.

I have a complicated illness history that I will try to sum up briefly:

I suddenly became ill with ME/CFS in 2002. I know that wasn't Lyme because it took me a year to get an accurate diagnosis and during that year, one doctor misdiagnosed me with Lyme and tried treatments for several months with no change at all. Besides, CFS fit my symptoms much better, and I have improved over the years with the help of CFS treatments.

I have had Lyme, though. About 6-7 years ago, I had a sudden-onset of knee pain (after 6 years of CFS with no joint pain at all), plus nausea. In addition, all my usual CFS symptoms got much worse. I knew immediately this was something different and not "just" a CFS flare-up, though it took a few weeks to convince my doctor since my Lyme tests kept coming back negative (a common occurrence). I was treated with a variety of antibiotics and natural/herbal remedies for about 3 1/2 years, until I could stop the antibiotics without my Lyme symptoms coming back (general rule of thumb is at least 4-6 weeks of treatment past when symptoms clear up, but it took me much longer, probably because of CFS).

That was about 3 years ago, and I've been back to my CFS baseline since then, with improvements with various CFS treatments and little or no joint pain or nausea.

About a week ago, I noticed the achiness starting in my knees again, especially late in the day. Within a few days, nausea came back, too. My husband and I thought it was probably just a CFS flare-up because of all the stress and extra exertion in my life lately (see recent posts), but I spent the weekend just resting and was no better. In fact, I felt awful Sunday night - even after a 3-hour nap - and couldn't even stay on my feet to finish making dinner - horrible nausea and knee pain, my old Lyme buddies. I woke this morning feeling exhausted and couldn't get out of bed until a couple of hours past when I normally get up (mornings are usually my best time and I normally wake feeling good, thanks to treatments for sleep dysfunction).

So, I talked it over with my old Lyme doctor (who is still my son's Lyme doctor). He agreed that a trial of doxycycline should be able to tell me if my suspicions are correct. That's how I confirmed the diagnosis last time...I felt really great the first few days on doxy, all symptoms cleared up, and then felt worse (the herx reaction). So, I will give it a try and see what happens, being extra careful to guard against yeast overgrowth this time.

I am really upset over all this - I just do not need another thing to deal with right now - but waiting and resting seems to just be making me worse, so I need to see what happens.

If you want to know more about my past experiences with Lyme (and/or my son's), click on Lyme disease down below, where the labels are to see all posts related to Lyme.

And for more information on Lyme itself and why it is so hard to tell apart from CFS (and why testing is so unreliable), see this recent post on CFS and Lyme.