Thursday, October 09, 2014

Activity, Crashes and Infections, Oh My!

It’s been a while since I’ve had the time and/or energy to write a post here, and I hardly know where to begin. The last couple of weeks have been full of all kinds of unusual activities, milestone events, and houseguests, while I’ve battled infections and ongoing ME/CFS crashes.

Back on September 15, I wrote a post about how my immunesystem treatments helped me to avoid a lengthy crash when exposed to a virus. I think I jinxed myself with that post! Although everything I said there has been true for the last couple of years, ever since I started taking Imunovir/inosine, this particular virally-triggered crash this past month has been the exception. The news has been filled with warnings about an unusually bad enterovirus going around this fall, so perhaps that is what I’ve encountered. Who knows? I can (and often do) drive myself crazy trying to figure out why these things happen, but the bottom line is that I’ve still been struggling the past three weeks with what feels like a virally-triggered crash.

Meanwhile, my life has been extra-busy and filled with once-in-a-lifetime milestones that just couldn’t be ignored. My husband and I had plans to go to New Orleans for our 25th wedding anniversary at the end of September. That’s where we first met and where we both lived when we were first dating and then married, so it’s someplace very special to us, a city that got into our blood (as it tends to do) and still feels like home to us. I hadn’t been feeling well the week leading up to the trip, but I rested as much as I could, and by Saturday morning when we left home, I was doing a bit better.
Ken and I in New Orleans last week
I’ll leave the details of the trip and how ME/CFS affects travel for another post. We did enjoy ourselves, but I was still pretty wiped out much of the time, and all the walking really took a lot out of me. By the time we headed home last Tuesday, I could tell I was not only crashed but had bronchitis.

Like most people with ME/CFS, my immune dysfunction makes me extra-susceptible to bacterial infections, and for me, that often means bronchitis. I went to the doctor Wednesday and she seemed skeptical when I said I just started coughing and feeling the tightness in my chest on Monday, but then she listened to my lungs and agreed it was definitely bronchitis – I know this pattern well! So, I took a 5-day course of Zithromax, but…

I rested all day Thursday, but my husband’s 60th birthday was Saturday, just a few days after our New Orleans trip. My mom and her husband came to stay with us for the weekend, and I’d planned a small gathering of friends and family for Saturday evening. Even though I’d kept the guest list small and ordered everything in – no cooking at all! – it still took a lot out of me because I was feeling terrible again by Saturday. The celebration was a success, though – I think everyone enjoyed the party, and my husband was thrilled by the birthday pies instead of cake (he loves pie!).

Ken and his pies at his birthday party

Sunday, I hit bottom. Slept until 10 am (unheard of for me) and woke feeling awful – severe sore throat, achy all over, exhausted, plus the cough and congestion were back. I did still make breakfast for our remaining crowd, and I had to refill all our meds for the week, but otherwise, I rested all day. We had plenty of take-out left-overs for dinner!

Sunday evening, our beloved little hamster, Lola, died. We knew it was coming, but it was still hard to say goodbye to her. I held her while I laid on the couch her last couple of hours. I woke Monday morning feeling a little bit better, but my dad and his wife arrived Monday afternoon! Yeah, it just goes on and on. My dad has cancer and will probably start treatment next week, so this was their last chance to travel for a while. I am very glad they’re here…but I’m still not feeling great.

So, that’s where I am today. I still have a mild sore throat and aches, still some cough plus some new congestion, still feel pretty wiped out. I am trying to take it easy, but this visit is important to me (and to them). I had to drive my husband to an eye appointment this morning (I’m typing this in the waiting room), but we are ordering Chinese food for dinner today!

After almost a month of ups and downs, I am pretty fed up. I finished my Zithromax and have also been taking loads of herbal antivirals/antibacterials/antifungals – plus restarted Diflucan when I went back on antibiotics – but so far, none of it seems to be helping much.

UPDATE: I wrote all that Tuesday morning but didn’t have a chance to post it between feeling so bad and having guests here. My cough got worse, so I went back to the doctor last night, and she confirmed that I do still have bronchitis…and perhaps the beginning of pneumonia on the right side. Ugh. So, now it’s back on antibiotics – super-strong ones this time (guaranteed to make my yeast-overgrowth flare up again!). My dad and his wife left this morning, and we now have a blissfully free few days ahead, so I am going to try to really rest and take care of myself.

Celebrating our anniversary at a favorite N.O. restaurant


  1. Brian Vincil2:43 PM

    Hi Sue,
    I have been following your blog for quite a while. I was diagnosed with chlamydia pneumoniae a year ago. Your symptoms with respiratory illnesses are very similar to mine. Have you been tested for that? It's a simple test. I am currently being treated for that.

    1. hi, Brian -

      Yes, I do think I was tested for that - I have foot-high stacks of test results! I am fortunate to be under the care of Dr. Susan Levine who is not only an Infectious Disease specialist but also a CFS expert. Luckily, I only get hit with respiratory symptoms and bronchitis once or twice a year - it normally clears up more easily, but I am guessing that my lack of rest while sick didn't help!

      Thanks for your message - I hope your treatment helps you!


  2. Hi, I have been reading your blog this last week. I am currently experiencing a crash. I've been exposed to many people who have colds. Your blogs have helped me to better understand this illness. I've been sick for 20 yrs and done a great deal of reading but your blogs put this into very understandable terms. My current Dr doesn't know a great deal about the research in this area. Unfortunately, I don't think he has the time nor the desire to read about it. His main field is oncology. I had been originally diagnosed by him but he has not kept up with the latest treatments, etc. I am planning on taking some of your suggestions such as the B12 treatments, and immune regulators. Thanks for all this information. I will be reading here often!

    1. Hi, Joanne -

      Thanks so much for taking the time to leave a comment. I'm glad you found my blog and that it's been so helpful to you! What you describe with your doctor is unfortunately very common - very few mainstream doctors know anything about how to treat ME/CFS.

      Good luck with trying some new treatments and please don't hesitate to let me know if you have any questions or need additional information.