I’ve touched on some of my struggles with chronic illness and most of my life I’ve found ways to live in harmony with illness and exceed expectations. But this year has kicked my tail. As promised, here’s what’s going on:
In July 2011, our whole family came down with Giardia, a small parasite that reeks much havoc. Apparently, we drank bad water during our trip to the mountains of North India. After treatment, Bryan and Lucy recovered well, but I just couldn’t kick sickness. My symptoms changed and I began to get high fevers that cycled through other ailments throughout each month. I tested positive for Mono, so we attributed my complete lack of energy, fever, aches, weakness, fainting, skin discoloration, speech problems, pink eye, etc., to that. 4 months later, we suspected there was something else going on. After 6 months of straight fever, weightloss, crazy symptoms, full-on flu-ish-ness, lots of doctors, hospitals and tests, the diagnosis came: I have active, late stage, Chronic Lyme Disease.
I remember that day in the hospital well. It was the end of November and Bryan and I had gone from doctor to doctor again while Lucy played at a friend’s home. I was sitting, waiting for my turn for blood to be drawn and I looked down at the new tests the doctor had ordered. After testing me for the typical South Asian infections multiple times, he had decided to do a run-down on western diseases. On the list to test for was Lyme Disease. They called my name and I went to the room and sat in the chair for the blood draw. I cried out in desperation to the Lord, begging that if all of this was really caused by Lyme Disease that he would make the Lyme active enough in my blood at that moment that this blood would test positive. Immediately, I broke out in a rash from head to toe and became flush. Then they drew my blood. One week later, the results returned. I had tested positive for Lyme Disease.
Next came a week of testing to see how far it had progressed. Yes, it was in my muscles; yes, it had reached my brain; no, my heart seemed unaffected; we’re not sure about the nerves.
I was so relieved to have a diagnosis, yet confused about what that meant. The truth is, 7 years ago a doctor suspected I had lyme. He tested for it and even treated it for 3 months. I felt better and we moved on. When I fell sick with the same symptoms in 2008, I asked to be tested again and it was negative. So, I thought either that original doc was incorrect or we fought it and it was gone.
But Chronic Lyme Disease is often misdiagnosed as Chronic Fatigue Syndrome and Fibromyalgia (two things I was diagnosed with as a teenager). And my chronic fatigue and muscle pain remained. I’ve assumed it always would. Yet, in the back of my mind I’ve wondered about Lyme. I guess just never enough to do my diligent research. Until now.
This Lyme stuff is NUTS. There’s a huge medical controversy in the states with everything from doctors losing their licenses for long-term treatment to insurance companies paying off CDC lyme committee members who wrote the treatment guidelines for CDC which has sparked this craziness. Research has proven over and over again that Lyme remains in patients who are not treated immediately. If an infected tick bites and you are unaware, then the bacteria that is isolated at one spot starts to spread. The Lyme travels throughout the body and finds places to burrow and hide. It reproduces and continues to burrow in new places, causing new symptoms. If it’s not discovered and lives in your body for years, it can be very hard to treat. And something like stress or another illness can set off Lyme to have war with your body. Yet, due to the unreliable blood tests and lack of awareness, this is becoming all too common.
I have had crazy bug bites that have sent me to the ER. I have pictures of rashes that liken the lyme rash. But the doctors I saw never suspected lyme then due to the area of the country. So I wasn’t treated for lyme then. (As many as 50% of Lyme patients never remember having a lyme rash and the blood tests can provide false negative results in as much as 50% as well, due to the Lyme hiding instead of being active in the blood. That explains my negative results before.) Lyme isn’t present in India, to their knowledge, so how long I’ve had this thing is a mystery.
And the treatment is just as confusing. I was happy to have a diagnosis and would love a doctor to say, “You should do this and you will get better.” But after these months of research since my diagnosis, I have concluded that chronic lyme sufferers most often don’t have that luxury.
While visiting the states in December I saw 5 doctors and the consistent line was “You have a long road ahead.”
I may take antibiotics for years. I may improve a ton; I may not. I’ve read about so many who have fought for years and still struggle. It always gets worse before it gets better as medications kill off the disease. I’ve been more sick, with scarier symptoms this month than before the diagnosis. It would be very easy to lose hope and get discouraged.
But my spirits are fine. Not high, not low. I’m in a state of realism mixed with hope that comes from the Lord. When I cried out to the Lord that day in the hospital, he heard my cry and had mercy on me and gave me that diagnosis as a gift. It’s like a message from God to keep trusting him and keep fighting to live for him with all I have, even if some days I don’t have much.
So there it is. I always struggle with what/who to tell about illness because it honestly makes me feel inferior, though I know that’s not the right perspective. I said I’d boast all the more gladly in my weaknesses, so I’ll do a better job of journaling my journey. I’d appreciate your prayers as we navigate through this muddy water to find the best treatment.