I haven't been feeling well this week. Not horrible, just run-down with achy legs. I've been trying hard to be patient and remain positive, trying to convince myself that it's just a mild crash from doing too much last weekend or maybe from the little bit of snow shoveling I did on Monday. I've canceled errands I wanted to run, put off things I meant to get done, and tried hard to rest even though my mind has been racing.
But I can't ignore the facts anymore. The achiness is definitely centered in my knees now, and it's getting worse, not better. I think - no, I'm pretty sure now - that I still have Lyme.
I quit the antibiotics 10 days ago, felt really great last week, and have been getting worse and worse since Monday. I've been through this before, in October, and I know what comes next. I go back on doxycycline and have to go through the herx (worsening of symptoms) again.
I'm trying hard to stay calm and not panic, but the truth is that I'm close to tears right now. I thought I was done with Lyme. Isn't CFS enough to deal with?
Mostly, I'm worried about the next few days. I've worked hard to plan this trip to Baltimore this weekend, and I've been so excited about it. Now I can't decide whether to go back on the antibiotics immediately or wait until after the weekend. I'm not feeling great right now, but what if the herx starts right away and I get much worse for the trip? Or maybe if I start back on doxycycline now, I'll have a few days of feeling good before the herx starts (sometimes it works that way). I don't know what to do.
Also, we learned this morning at the orthodontist that Craig will definitely need braces next year. Previously, they thought he'd only need a retainer (which he had last year). So, my plans to try to set aside a little money so we could take the kids on a nice vacation next year are shot. I don't know how we'll find the money to pay for braces, on top of all the other medical bills.
A very rough day.
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
Dear Sue,
ReplyDeleteI'm so sorry to read about the Lyme coming back. Having been through two herx-type reactions myself (on antivirals), I would suggest trying to avoid having the herx while on the trip. In my experience, it doesn't come on for several days, but it could be different with doxycycline. How many times have you started doxycycline and did the herx come on after the same number of elapsed days each time? If so, you have that to guide you.
And the rest, you already know: limit what you do as much as possible, etc.
I'm just so so sorry this has happened the week before your trip. We just can't control the course our lives will take. Last month, my husband was two days into a treasured month-long retreat he goes on every February (after painstakingly preparing food for me for the freezer before he goes) and I fell and broke my ankle. A friend took me to the doctor and, for two days, I told myself I could make it on my own, crawling on my hands and knees to the kitchen, etc. But with the CFS on top of the broken ankle, I finally saw I couldn't and had to call him home.
I hope you can figure out what's best for you to do this weekend with the minimum of mental upset. Again, I'm so sorry.
Toni
Oh Sue, I'm so sorry. It does seem very unfair. Sometimes everything bad seems to happen at once. What do we do? We get through it some how. Jessie has this song (I think it's rap) but she says it's her theme song. "That Which Doesn't Kill Me Only Makes Me Stronger".
ReplyDeleteIn the meantime, rest rest rest and take care of yourself.
You're in my thoughts and prayers.
Thanks, Toni, for the kind words and encouragement. And I'm so sorry to hear you broke your ankle! I'm sure you hated to disturb your husband's trip, but sometimes we just can't control things. How nice, though, that he made dinners ahead for you and froze them - I'm very impressed! Rest up that ankle - I hope you recover soon.
ReplyDeleteSue
Thanks, Lori. You're right - things sometimes seem to go wrong all at once. Fortunately, Craig came home from school doing OK - not too upset anymore about the braces. He's a great kid - very upbeat and positive. he likes that same song you mentioned Jessie likes. He just downloaded it to his iPod this weekend and I was explaining to him what the lyrics meant. I know I'll be OK and we'll get through this - I just need to wallow a bit tonight. Thanks for thinking of me - it helps!
ReplyDeleteSue
It strikes me as ironic that, once again, your disease is threatening to interfere with your Baltimore trip. The cosmos have a weird sense of humor! I'm so sorry to hear the Lyme is back -- yes, CFS is enough to have to deal with! Hopefully you'll make it through your trip without too much difficulty.
ReplyDeleteBraces are so much cooler now than when we were kids! I have a son with perfect teeth who was so disappointed when all his friends were getting braces. I, of course, am perfectly happy to not have the added expense!
Ah, things will work out somehow. They always do.
((hugs))
ReplyDeleteOh no, how disappointing and frustrating. Reminds me of that saying "How do you make God laugh? Tell her your plans."
ReplyDeleteHang in there.
Oh, Sue - so sorry to hear it! I know that ache in the legs all too well. However, I'm going to go against the grain and suggest that you go ahead and start the doxy. You might remember my post from two days ago -- I talked about this very thing ... avoiding my meds (doxy specifically, which I didn't mention at the time) to avoid a herx -- I think maybe that was a mistake and wished I'd taken them - even if it meant feeling bad on my trips ... the delay (in my new thinking) just delays healing and gives the Lyme more time to run amuck in your body- possibly making the herx even worse.
ReplyDeleteWhatever you do will be the best decision for you and I'm feeling for you all the way.
best,
Pamela
Oh, Sue, I'm so sorry that the Lyme is back, and that you're going through this - especially when you have a trip planned! Take care of yourself!
ReplyDeleteWe'll be thinking about you. Again, I'm sorry.
Did I tell you that I just found out that I had Lyme? Untreated for a long time. I hope that you can get the help you need to feel a lot better soon. I'm getting on a protocol now to fight it and that's not fun, either.
ReplyDeleteHere's something you can do. Are you on Goodreads? If not get over there and friend me, 'kay? :)