Monday, July 14, 2014

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.


  1. Darn it, you don't deserve this nonsense, Sue. You already know what I'm going to say though, I mean you sort of know. Clayton Nolte believes that basically everyone has Lyme to some degree, and that Structured Water helps heal it. Just something to consider, my friend. Love you so much. I'm so grateful for Facebook and the amazing connections it's provided me with people.

  2. I'm so sorry to hear this. I wish I could just make everyone in the world better! Sending lots of positive vibes and a great big virtual hug your way

  3. Anonymous3:17 AM

    Hi Sue, maybe it wont be the same this time around if its lyme. It doesnt mean you have to be in treatment for Three years again. But if its possible stay on doxy a long time to really put it down.

  4. Anonymous12:27 PM

    Could it be due to mold exposure?? I have been diagnosed with CFS, but as we know, it is not a cause, merely a cluster of symptoms. I could also be diagnosed with depression, fibromyalgia, and a few other disorders that are so much alike but have no definitive test. However, this latest bout which started 3.5 years ago, took me to 11 doctors and one finally diagnosed me with biotoxin illness due to mold, and at least one toxic mold WAS eventually found in my office at work growing in the walls of the water-damaged building. The diagnostic tests that my doctor used are far different than routine blood tests which showed that there was "nothing wrong with me." If you suspect mold, you might read "Mold Warriors" by Dr. Shoemaker. He's a little hystrionic, but the science he uses is solid. Recently others have been publishing on mold illness, and it is starting to be accepted by some doctors. There is a treatment protocol, but it takes a very long time to recover. Still, I feel infinitely better than I did before I started the treatment and now that I'm removed from the mold exposure.

    1. So glad you found some help and are feeling better! No, mine wouldn't be anything environmental - I am in the same house, etc. and just had sudden onset joint pain last week - that means almost certainly Lyme.

      Hope you continue to get better!

  5. Anonymous12:39 PM

    I need someone to talk to. I've been so ill for so long, I've lost all my friends. Guess they weren't my friends to begin with, but I'm so lonely! So isolated! Have no energy to go anywhere or do anything, I can hardly take care of myself and keep it together for work. So sick of being sick.

    1. So sorry to hear you are feeling so alone and isolated - it's a very common feeling among ME/CFS patients. Have you tried interacting with other patients online? there are lots of great ME/CFS groups on facebook - just search for ME/CFS and you'll find a bunch or let me know if you are looking for a particular type of group.

      You're not alone!!