Good news from the doctor appt!! Apparently the pain I'm experiencing sounds like its good pain! (Lyme die-off: Jarisch-Herxheimer reaction) That's the same thing they thought when I was on the last medication (which didn't work - it was actually me getting worse) so I'm paying close attention to how I feel this month. At my appointment next month they'll evaluate how I'm doing on the doxycycline and if I need an IV installed. Pray the Doxy is really working!!!!
[Oh, and I've been on treatment for 15 WEEKS ALREADY. Doesn't time fly?!]
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Life With Lyme Disease
"But they who wait for the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."
- Isaiah 40:31
- Isaiah 40:31
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My Story: My Battle with Lyme Disease
Wow, it's been a LONG road. Let me explain; here's my story: For 3 years I suffered from a previously undiagnosed chronic illness that we eventually discovered was Lyme disease. I had every kind of symptom you can imagine. For the majority of this time my life was a living hell.
In February of 2008 I lost the ability to write...I couldn't even hold a pen. That started my 3+ months of, for all intents and purposes, being paralyzed. I could barely walk, couldn't hold a pen let alone write, couldn't go to school, or even move without pain. I had such a horrible, foggy feeling in my brain that I couldn't think at all. You'd be surprised how much you miss the "little things" in life once they're gone. Things like signing your name....writing an email...walking up the stairs...stretching...getting dressed (pain-free)...feeding yourself...washing your hair without crying because the pain in your arms is so excruciating... I couldn't do ONE of those things during those few months (and some of them for much longer). It was the worst time of my entire life.
Around the end of May 2008, all of sudden my pain started to dissipate. I started being able to do all sorts of things I hadn't been able to do in months!!! By the middle of June I was living mostly pain-free. The pain stayed away for a long time...it was magical! We thought I'd been miraculously cured. Then, in October 2008, I again started feeling the loathsome symptoms I had felt the previous January that turned me into a multiple brace-wearing cripple. It was horrible. I dreaded the day the pain would again take over my life.
From November 2008 to June 2009, the pain increased daily. Every day there would be a new pain, or a previously existing pain would measurably worsen. I have only mentioned the physical things this far though. Starting in January 2009, I had quite a bit more neurological symptoms. My vision got really blurry, I had double vision, colored eye spots, black eye spots, flashing lights, floaters, brain fog, severe memory loss, stuttering, dyslexia, other speech impediments, hearing loss, several different kinds of hallucinations, and tremors/shaking (to name a few). All these symptoms got worse every day. I thought it would only a matter of time until I wouldn't be able to move. Just like the year previous,, I would again be a cripple. Barring a miracle, that is.
That miracle happened in March 2009 when my mom heard a radio show “by chance” that talked about Lyme disease. Listening to that, attending a lyme disease support group meeting, talking with lyme survivors, and more, led to my swift diagnosis via my symptoms and a very specific, rarely done blood test within two weeks of hearing the radio show. Then we got an appointment with a local infectious disease specialist who was known to truly treat lyme until it was irradicated - even if it was long-term. He was booked solid until July 22, which was when the appointment got scheduled for. But I started to get a lot worse. Then God performed yet another miracle by allowing someone to cancel and move my appointment up to the beginning of June. I then started on oral antibiotics and was on those for 5 months.
After having felt better for awhile, I started getting a lot worse near the end of those 5 months. On 3 November 2009, the doctors decided that I had been on meds for long enough and that I was lyme-free! We were ecstatic, as we were expecting me to be on meds for up to a year or even two. It seemed too good to be true. After getting off the meds I felt better; I even felt really good! ...That was over 4 months ago. A lot of my symptoms didn't change throughout treatment (and post-treatment) and there is still leftover pain and after-effects of the disease.
In February of 2008 I lost the ability to write...I couldn't even hold a pen. That started my 3+ months of, for all intents and purposes, being paralyzed. I could barely walk, couldn't hold a pen let alone write, couldn't go to school, or even move without pain. I had such a horrible, foggy feeling in my brain that I couldn't think at all. You'd be surprised how much you miss the "little things" in life once they're gone. Things like signing your name....writing an email...walking up the stairs...stretching...getting dressed (pain-free)...feeding yourself...washing your hair without crying because the pain in your arms is so excruciating... I couldn't do ONE of those things during those few months (and some of them for much longer). It was the worst time of my entire life.
Around the end of May 2008, all of sudden my pain started to dissipate. I started being able to do all sorts of things I hadn't been able to do in months!!! By the middle of June I was living mostly pain-free. The pain stayed away for a long time...it was magical! We thought I'd been miraculously cured. Then, in October 2008, I again started feeling the loathsome symptoms I had felt the previous January that turned me into a multiple brace-wearing cripple. It was horrible. I dreaded the day the pain would again take over my life.
From November 2008 to June 2009, the pain increased daily. Every day there would be a new pain, or a previously existing pain would measurably worsen. I have only mentioned the physical things this far though. Starting in January 2009, I had quite a bit more neurological symptoms. My vision got really blurry, I had double vision, colored eye spots, black eye spots, flashing lights, floaters, brain fog, severe memory loss, stuttering, dyslexia, other speech impediments, hearing loss, several different kinds of hallucinations, and tremors/shaking (to name a few). All these symptoms got worse every day. I thought it would only a matter of time until I wouldn't be able to move. Just like the year previous,, I would again be a cripple. Barring a miracle, that is.
That miracle happened in March 2009 when my mom heard a radio show “by chance” that talked about Lyme disease. Listening to that, attending a lyme disease support group meeting, talking with lyme survivors, and more, led to my swift diagnosis via my symptoms and a very specific, rarely done blood test within two weeks of hearing the radio show. Then we got an appointment with a local infectious disease specialist who was known to truly treat lyme until it was irradicated - even if it was long-term. He was booked solid until July 22, which was when the appointment got scheduled for. But I started to get a lot worse. Then God performed yet another miracle by allowing someone to cancel and move my appointment up to the beginning of June. I then started on oral antibiotics and was on those for 5 months.
After having felt better for awhile, I started getting a lot worse near the end of those 5 months. On 3 November 2009, the doctors decided that I had been on meds for long enough and that I was lyme-free! We were ecstatic, as we were expecting me to be on meds for up to a year or even two. It seemed too good to be true. After getting off the meds I felt better; I even felt really good! ...That was over 4 months ago. A lot of my symptoms didn't change throughout treatment (and post-treatment) and there is still leftover pain and after-effects of the disease.
After being off meds for over 3 years now, I see a lot of neurological and physical effects which have been pretty severe. I certainly have brain damage and reduced cognitive function from the lyme disease. Along with those neurological affects, I have discovered that my cardiovascular system will never be the same; I have no endurance. Because the lyme ate its way through my body, I am much more prone to illness and injury now...my body seems much older than it is. I have a weak back and hip/knee/ankle weakness. All of that has been fun to deal with in college, but God is with me every step of the way and He has richly blessed my life in spite of everything.
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