Monday, January 05, 2009

Happy New Year!

I just came back from an invigorating hike with a friend - a great way to start my new year! I'm still on a double-dose of antibiotics for the Lyme disease I contracted in July, and it's still working very well. I've had almost no knee pain the past few weeks and have had great energy most days! I have a check-up with my Lyme doctor on Friday. My stamina is pretty low after being so sick for almost six months, but I started taking walks last week and am trying to slowly build up. It feels so good to be able to move again. I feel like I am back to where I was during the first six months of 2008, after successful anti-viral treatment (almost two years now on Valtrex, then Famvir) and low-dose naltrexone. I certainly still have CFS, but my energy is much better and I can do more than I could in the past 7 years, since getting CFS.

We just returned from a week visiting my in-laws in Oklahoma. It was a tough visit because my mother-in-law now lives in a nursing home due to advanced Parkinson's disease. She really hates how incapacitated she has become and wants so badly to return home, but she can no longer stand on her own. My father-in-law brought her back to the house for two visits a day while we were there. I spent the week cooking, cleaning, and shopping. I was glad to be able to help her, but we can only afford to visit twice a year. We feel pretty helpless the rest of the time.

My mother-in-law was one of the only people in my life who "got" my illness right from the start, probably because of her own struggles with Parkinson's. There are some similarities that we share - fatigue, sleep dysfunction, limited energy. Of course, she's now far worse than I am, but we still both take a nap after lunch every day. I just wish there was more I could do to help her, but it's hard from long-distance.

Our boys are doing well and had a great time in Oklahoma. They have a good friend who lives next door to their grandparents, so they have fun even on a visit like this when we're mostly just staying at home. Craig had a stomach virus right before we left that triggered his CFS to worsen for about two weeks. He would feel fine during the day and then crash every evening by about 6 pm. Thankfully, that ended a few days ago, and he seems back to his usual energetic self now, even in the evening. We've always celebrated New Year's Eve early - usually at 8 or 9 pm - with our boys because they need lots of sleep because of their CFS, but we set a new record this year. My mother-in-law can't make it past 7 pm most evenings now, so we did our New Year's Eve celebration at 6:30 pm!! It was still fun. And for the first time in years, I stayed up late enough to see the ball drop on TV...OK, so it was only 11 pm Central Time in OK, but it was midnight in my home time zone! I was quite pleased.

A bright spot during my visit was the chance to get together with my best friend from high school. In a very strange coincidence, both of us (from Rochester, NY) ended up marrying men from Oklahoma! She works as a physiatrist (a pain specialist) in Oklahoma City, so I get to see her twice a year when we visit. We had a wonderful dinner together. There's nothing like spending time with an old friend. In a shameless bit of promotion, I will also mention that she's written and published a Christian weight-loss book that's now available through amazon. I'm so proud of her! Check it out at the link below.

So, now I'm back home and ready to start a new year. Here's to a happy and HEALTHY 2009 for all of us!


  1. Happy New Year to you and yours! I'm glad you're gaining some energy again.

  2. Happy New Year! I'm glad you are finally feeling better. I'm so jealous you got to go hiking! I am going to do that on one of my really, really good days. Great picture of your boys, too.

  3. Happy new year Sue! I am glad you are doing so well.

    I am having a really bad day and just need to reach out to someone. I have been taking Famvir now for a month and feel worse. I feel my brain is just shutting down and everything aches. I even had joint pain in knee and elbow. I just feel I am getting progressively worse. Did you say in another entry that Famvir worked great for you and quickly?? Thanks..

  4. Paula -

    I know about those days when you need to connect with someone. I'm here!

    And congratulations! The fact that you feel much worse is really good!! I know that sounds crazy, but it's true. What you're experiencing is called a herx reaction. It basically means that the anti-viral is working - it's killing off a bunch of virus and the dead virus is flooding your bloodstream, triggering your immune system to go a little crazy, making you feel so terrible. It's a very good sign that the anti-viral is going to help you.

    The tough part is that a herx reaction can sometimes last for a long time - in some cases, many months. It doesn't mean that every day will be this bad, but you could be in for some rough times. Just keep reminding yourself that it's a sign that the Famvir is working and that eventually you'll feel better. Many people with CFS report that the first improvement they notice (after the herx) is clearer thinking.

    One thing you can do when the herx gets really bad is to skip a dose of Famvir. That will allow your body a little break without affecting your overall treatment.

    I personally didn't have much of a herx with anti-virals, probably because my viral counts were fairly low, but I did experience a fairly severe herx reaction during my recent treatment for Lyme disease (the herx reaction is well-known in treating Lyme).

    So, I know this is a very tough time for you, but hang in there! This is good news, and things WILL get better. In the meantime, stock up on good DVDs and books! And, remember I'm here if you need to talk about it.


  5. Sue - thanks so much for the pep talk. This is so hard. I always question if I'm doing the right treatment so I guess patience is the key. I'm still not convinced I don't have Lyme but need to find a Dr. who'll investigate this thoroughly for me.

    Thank you for your blog and being there on the rough days!!