Treatment Recap: Month 3

Holy moly month 3. What a rough one. I felt awful this month. But maybe that’s a good thing?

I caught my first cold in over a year. You see, I had the incredible privilege of officiating the wedding of two of my best friends at Mt. Rainier on September 5. Only, Mt. Rainier was about 20 degrees cooler than any of us had planned for… and riiiiight as we ladies started heading down the isle, the skies opened into one of the most dramatic icy downpours I’ve ever seen! It was actually kind of hilarious how bad the timing was. The bride and I shivered through the whole ceremony (poor groom didn’t know what to do with us). Pretty much everyone got sick after that.

wedding rain

So on top of my usual Lyme crud, I also had a horrible sore throat, congestion and overall sense of weakness and junkiness. Took me two weeks to get over. But I’m telling myself this is a good thing! You see, my body mounted a defense!! I don’t actually think I’d been cold-free for the previous year and a half. I think I was picking up viruses and such as usual, but my body just didn’t do anything about them because my immune system was so suppressed. When the runny nose came on, I got excited. I had some immune activity! The joy quickly passed as I remembered how miserable colds are. Heh.

I also increased my doxycycline this month and added LymeStop to my antibiotic treatments, so it’s been herx city.

Things I struggle with lately include:

  • General weakness, feeling tired, woozy, off balance, sluggish and sore.
  • I get sweaty and have heart palpitations with even minimal activity.
  • My low back feels like an old lady’s. Difficult for me to pick something up off the floor without holding onto a ledge for support.
  • I have vivid, vivid nightmares and wake up with anxiety and a racing heart that make it difficult to get back to sleep.
  • As is usual for me, I continued having horrible pressure headaches with pain at the bridge of my nose, base of my skull and jaws.
  • A vague plugged ear feeling at times, especially with activity.
  • Consistently blurry vision that worsens with fatigue.
  • Worsening this month: Sporadic light sensitivity, holes in my vision and sometimes zig zaggy lines in front of my vision.
  • A continued lack of appetite.
  • New this month: Nausea, bloating, heart burn.
  • Still the ever present stiff neck and ringing ears.
  • Weight loss: I lost another 6 pounds this month, taking the grand total to around 30lbs down.
  • Continued low body temperature, averaging about 95 degrees.

Some things I’ve noticed less of this month include:

  • Numbness and burning in my hands and feet.
  • Muscle jerks / myoclonic seizures I have at rest.
  • Still, very little brain fog.
  • Far fewer episodes of fight/flight (except when I have nightmares), and very little depression and anxiety.
  • Only minimal episodes of exaggerated emotions or rage.
  • Very little jaw pain.
  • No joint pain this month (hollah!)
  • I’ve been able to walk around barefoot more often without pain in my feet or cramping in my calves. Neat! I even wore regular, non-orthotic sneakers one day.
  • My hair doesn’t appear to be falling out anymore. Gonna try to grow some back!

Thanks to the cold and herxing, it was difficult to keep my eye on the prize in September. I admit I lamented a few times that treatment must not be working. Then I remembered, I am only 3 months in. And I *AM* getting better.

Although I now believe I’ve had Lyme for nearly 20 years (and Lyme-induced MS for 10), I’m coming up on my one year anniversary of being really consistently sick. It was October 19, 2014 that I woke up without hearing in my right ear, and things went downhill quickly from there. I haven’t felt normal since. And I have been feeling really blue about that, sad that I’ve been so distracted from my life by feeling so cruddy for so long.

But the truth is, I’ve improved a lot this year. Even before my Lyme diagnosis, I made huge improvements by treating the vestibular disorder (caused in inflammation of my labyrinth, middle ear) and hashimoto’s thyroiditis. I made improvements with vestibular rehabilitation, diet modifications like removing gluten and supplementing my thyroid hormones. I came a long way. And now that I know what’s really causing all this distress, now that I’m onto the real bug, things can only get better.

Month 4 starts now. We’re changing up my antibiotics. My doctor suspects I wasn’t quite strong enough for rifampin yet, so I’m quitting rifampin and plaquenil in favor of omnicef and Bactrim. Hopefully I’ll see continued gains with perhaps a little less suffering through October.

Patience is not my strong suit. And this whole Lyme business, it’s a good lesson for me.

Onward.

-k

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3 thoughts on “Treatment Recap: Month 3

  1. Go you!! I’m just one month behind you in this treatment thing and you don’t know how much it helps to hear what’s (probably) just around the corner for this girl! You’re doing a great job.

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    • I hope so!! It’s been a miserable month, the progress is hard to see day to day. That’s why I like it in print, you see. Hard to ignore the facts in billet point! I read several of your entries, you’re a BEAUTIFUL writer. And your faith is so eloquently captured. I could read that for days. Sending you lots of healthy wishes tonight!

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      • Lists if improvement and new struggles are perfect! I need to start doing that for myself. Thanks so much for reading my stuff. That is so sweet! Hope you can rest tonight and you have spoons in the morning!!

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