Tuesday, June 14, 2011

Relapse

In my previous post, I mentioned the big "r" word: relapse. It's sad to post this, but it's undeniable--many of my symptoms are back. I was functioning at around 90% for a few months, and now I'm down to around 60% and declining a little more each day.

It has been a gradual decline over the past few weeks, and I am grateful that I've had time to adjust to one or two symptoms at a time. If you've ever had to take pain medicine and you've felt the exact moment of blinding pain when your medicine wore off, you may understand what I mean. Having all of my symptoms come back at once would be simply hellish.

There are a few things that happened that I believe caused me to relapse. The first thing that happened was that I got a massage after not having one for over a month (because I had been feeling so well). Many people with Lyme Disease Herx from massages, but--maybe because I've always gotten them two or three times a month--I don't usually Herx from them.

The second thing that happened was that since I was feeling so well, I did two weeks off of antibiotics instead of my normal one week off (with my doctor's permission, of course). When I started feeling well again and functioning pretty close to my old self again, it became extremely frustrating to continue taking massive doses of medicine. Also, we were going out of town to go camping and I didn't want the hassle of antibiotics to mess up my trip. Lesson learned: A little bit of an inconvenience is much better than a relapse. My body was not ready for two weeks off.

I believe that the biggest factor causing my backslide is stress. I'm doing my best to reduce as much stress as possible, which--as everyone knows--is easier said than done. And finally, the last thing that caused my relapse is that I've let my diet slide. And by "let it slide," I mean I'm eating gluten, dairy, and sugar again. Every day I try to get back on the Lyme diet, but every day temptation gets the better of me. I keep trying, though. I truly need to go to sugar rehab!

Even though I'm relapsing, at this point I can still function. I can drive and I can still take care of my kids. But over the last few days, I've seen a bigger increase in my symptoms and a bigger decrease in my energy. I told my husband the other day to think of me as a character in a video game with an energy bar over my head. I told him I had about 2 out of 5 bars of energy left, although that number fluctuates greatly during the course of a day. It sure would make my life easier if other people could see my energy bar!
Lymie vs. Healthy Person



I spoke with my doctor on the phone yesterday and the two-weeks-on-antibiotics-and-two-weeks-off plan has been abandoned. I'm back to three weeks on and one week off.  She also put me on a once-a-week dose of Larium in addition to my other antibiotics. That means one day a week, I will take four antibiotics, instead of three! Ay dios mio!

My symptoms are indicative that my Babesia is flaring up again. My night sweats are back; my headaches, leg pain and joint pain are back; etc. Larium is the medicine that caused a stronger Herx in my body than any other medicine, but, ultimately, it is the one that gave me my life back. I was pretty exhausted today, but I was able to push through the pain and fatigue of another medicine. Work your  magic, Larium!

7 comments:

  1. I am so sorry this has happened Alyson. It is so hard when we go backwards to that place we never wanted to return to. I am hoping it will not last as long. Two weeks off abx gave more bugs the chance to come out of hiding but now you can kill them off. You hang in there, Alyson, it will get better again and you will fly free!!!

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  2. Larium = devil + magic = devil's magic ...That sounds sexy. Dark, wicked and sexy. <3 you!

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  3. Ugh - so sorry to hear about a relapse! Something we all fear; I hope you recover quickly!

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  4. ugh! But you can do it!! Praying for you!

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  5. The energy bar is a perfect description!

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  6. Hi Alyson,

    I was just diagnosed a few weeks ago and start treatment at the end of the month. I am really enjoying your blog with your honesty and information. The engery meter is great. I would love a meter to post over my head. It's amazing to me how others have no idea just how little we are running on when we are hanging out with them. I have always told my family it's like I have a 30 volt battery inside me when everyone else has a 100 volt battery and thinks I'm just like them. Now I know why. Do you think we will always have to avoid sugar to feel good?

    Nicole
    Winnipeg

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  7. Thanks for your comment, Nicole! Let me know if you start a blog to document your treatment journey!

    The spirochetes feed on sugar, so when we give in to sugar we are actually feeding them! Yikes!

    I wrote about it here: http://alyson1durland.blogspot.com/2010/12/breaking-up-is-hard-to-do.html (sorry about the graphic Ben & Jerry's pic if you're trying to cut sugar, lol)

    Hang in there, Nicole! :)

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