Thursday, August 21, 2008

Lyme Disease and Allergies

First, I want to thank all of you who left comments or sent me e-mails last week. I felt awful, and your support and encouragement meant a lot to me. You reminded me that I'm not alone in this crazy life of living with CFS. Thanks!

So, it seems that I do have Lyme disease because the antibiotics worked. For the first few days, I was still severely crashed and still had bad knee pain. Then, suddenly, most of my symptoms lifted on Friday. I was able to go on the camping trip with my family to the Catskills. By Saturday, I felt GREAT - I was full of energy, and my knee pain was almost completely gone. It felt like a miracle to me. I was so relieved and felt so full of joy, as I enjoyed the gorgeous setting and being with my family. I went kayaking on the little lake; played with my niece, nephew, and little cousins; and felt like I'd been reborn.

On the downside, something up there in the mountains triggered my allergies to go berserk. By Sunday, I was feeling run-down again, with constantly watering eyes. Since returning home, I've been moderately crashed - probably from some combination of allergies, Lyme, and a very active weekend.

I went back to see my doctor on Tuesday. She's now turned 180 degrees from her opinion last week. Now that she's seen that the antibiotics are helping, she's worried that the Lyme might be further along than we previously assumed (more advanced Lyme requires different treatment strategies, including a variety of IV antibiotics). She says she's concerned because I was so very sick the last two weeks, because the knee pain was so severe, and because she can still feel a lot of fluid/inflammation in my knees. Personally, I think I was so sick because of the impact the Lyme had on my CFS. She's prescribed two months of antibiotics, and she wants to see me again in three weeks to examine my knees again.

Lyme is a known trigger for CFS - triggering CFS to start in about 11% of the people who get Lyme or triggering CFS to worsen in those who already have it. We've seen this first-hand with our older son. His first bout of Lyme disease in 3rd grade is probably what triggered his CFS to start, and we saw a reduction in his stamina after his Lyme infection last year, even after it was completely eradicated (which we triple-checked with visits to specialists, lots of lab tests, and even additional antibiotic treatments, just to be sure). So, we'll see whether this Lyme infection has any lasting effects on my CFS. Maybe the low-dose naltrexone will help my immune system to adjust.

Today, I'm trying to rest. After being so sick for the last several weeks, I felt like Rip Van Winkle this weekend, waking from a long sleep to wonder where the summer went! My kids start back to school on Monday, and there are so many things we need to do, things that I put off while I was sick. So, at the start of this week, I kept pushing myself to get things done even though I didn't feel well. My previous 7 months of feeling quite good seems to have made me forget the #1 rule of CFS: listen to your body and rest when you need to. So, I'm trying to take it easy today and recover. In fact, that's enough time on the laptop!


hobbz said...

I'm soooo glad you finally figured out what was going on. Hopefully you are on the up-swing now and the new anti-biotics will help you feel even better. Living with chronic fatigue is certainly no fun, but you are surviving and pushing on like a trooper. Keep your head up and remember that all flares DO end at some point...hopefully sooner than later! take care of yourself in the meantime

Anonymous said...

Hi Sue,

Thanks for the update! I just wanted to share that getting allergy shots, I believe, have been critical to my recovery from Lyme. I do think the LDN is helping since it's ragweed season (early), I'm overdue for my shots but am not suffering nearly as much as usual.

Hope you continue to make progress - oh, if you aren't already, you may want to take a good strong acidophilus while you're on the doxy (should contain billions of live micro-organisms;)