My Lyme Disease Story and How It Changed Me

When I was approximately nine or ten-years-old, I found myself having intense headaches and was so lethargic I didn’t want to get out of bed. My mother, being the good mother she was, took me to the doctor. My headaches were not centralized on my sinuses, but on the top of my forehead.. But it seemed that I had some infection or another, and everyone’s guess was that I had a sinus infection – something my family was prone too. That theory seemed to ring true when within hours of my first dose of antibiotics I started to improve.

After not feeling like myself for several weeks, I still remember the thrill of getting my energy back What a relief to be able to be active again and play outside! Like most childhood illnesses, it appeared my sickness was a brief blip on the radar. I finished my course of antibiotics, and all seemed well. That is, until several weeks later when all of my symptoms returned. Back to the doctor we went, more antibiotics, and the same results. I felt great while on them, and then once off of them slowly had the symptoms return. After dancing this jig a couple of times, my doctor sent me in for an MRI to see if I had clogged sinuses. They were as clear as they could be.

With that, my doctor refused me any more antibiotics for my fatigue and headaches, and my mother was perplexed with what to do with me. I don’t remember exactly what happened from that point forward, except that my mother put me on a special diet, and she tried to encourage me to get out of bed as much as possible. I don’t know for sure, but probably within this time frame, or soon after, my digestive difficulties may have also began (though there were perhaps other factors involved as well for why that happened). I do remember neck stiffness, eye issues, and some ear ringing.

Over time, my symptoms became less severe but I also learned how to cope with the fatigue, headaches and my overall malaise.

Little did we know that these symptoms were likely caused by Lyme Disease. I never had the rash from a tick bite, but I had spent plenty of time outdoors hiking where there were ticks, and playing with a herd of goats up in the mountains at my grandparents. My symptoms weren’t as severe as they are for many people (high fevers, for example), and other symptoms didn’t emerge until years later. My immune system was likely keeping the infection mostly at bay as I was able to get on with my life – although with less energy.

In high school, I did go through periods of deep fatigue, but by that point I had accepted fatigue as just a part of life. Because I was homeschooled, I think my quieter lifestyle prevented me from comparing my energy to my peers – so I didn’t really question whether I was experiencing something abnormal. But my low energy became increasingly obvious to me when I went to college. I was exhausted by noon, and would have to take a cat nap as best as I could in the student lounge, and then would be in bed by nine that night while my peers were partying it up and still showing up in the morning. As life went on I wondered why it seemed like I had such a hard time keeping up on life. All moms were tired, but they still seemed to be able to keep up on more than I could. I worried it was somehow a reflection of my work ethic at first, but eventually I came to accept that there was something wrong with me, even if I didn’t know what.

As I sought help for myself, I was diagnosed with adrenal fatigue, told I was as healthy, or finally, found out that I had extremely low iron stores. My symptoms would improve and even go away sometimes, only to come back much worse in the future. Achy joints, headaches, my hair falling out, and more pointed to autoimmune or thyroid issues, but nothing conclusive was ever shown on standard testing.

The only practice that consistently helped me was getting a lot of rest and eating very well. That changed when high stress related to a situation with an old family friend and other things made my insomnia flare up for months. We worked through that and were somewhat stable when I got pregnant again, and joyfully welcomed another daughter to our household. Two weeks after birth her nose began to run, and my oldest had swollen tonsils which wouldn’t go away. Long story short, our basement was growing mold and after a very quick and stressful move out my health collapsed completely (though my children rebounded almost immediately).

I had never been this sick before though low energy had haunted me since my childhood. I developed adult onset allergies, severe chemical sensitivities, very inflamed joints, and was truly exhausted. We think that my body had been able to mostly cope before this point with Lyme Disease, but after stress coupled with prolonged mold exposure during pregnancy, my body couldn’t keep fighting it off. I went on a strict AIP diet and it helped, but was hard to maintain and I was still very sick. We ended up having to move twice more, and I started getting back to back infections and this went on for months. After seeing several doctors, wondering many nights if I should go into urgent care, I got a recommendation for a new doctor.

He treated me for mold exposure and through that, and other therapies I improved, but it was obvious that I had something else going on. We finally decided to test for Lyme disease. It was something on our radar for a long time. I told my husband, Joel, that if I tested positive, it would explain all of my symptoms, but I was still surprised when it came back positive.

It appeared that stress, mold, pregnancy, and three moves in a year had finally caused Lyme to win a long battle with my body to completely over run it.

Having Lyme disease is tough, but sometimes suffering changes you for the better.

Although I choose a more gentle treatment for it, the die-off effect was so extreme I ended up not only far worse but also in the emergency room with stroke symptoms. After that we went to tiny amounts of a natural antibiotic, and was still so sick it was hard to leave the house and all of the horrible infection symptoms- that we now knew were likely related to Lyme – came back to haunt my every minute. After trying to stick it out for months and seeing myself decline rapidly, I went back in to my doctor, and we changed plans completely. All of my labs looked worse, my inflammation was incredibly high, and I had extremely high amounts of Epstein Barr virus in my body. The new herbal protocol we started brought almost immediate relief. I had about four or five months of much better health during the summer, but then crashed yet again this last fall. I am starting to rebuild to have better days again, and everyday I wake up not feeling like my body was falling apart from the inside out, I’m grateful. I have a very long way to go still in my healing journey, but I’m thankful to know now what has haunted me all these years.

Throughout this journey I’ve started privately writing a lot about suffering, pain, and my relationship with God. I’ve written many words about the cost of suffering. I want to share some of that journey with you all.

But today, as share this broad sweep of my story, I want to share some of the ways it has turned my life towards a new direction that have been positive.

I was a very physically active young girl, but I also loved books. With my lack of energy, I turned more of my attention to my books then I would have otherwise. While I can grieve the benefits a healthy body would have given me, I do cherish the wonderful world of books I discovered so thoroughly at a young age. That love of learning and reading has never slowed down and I’m grateful for it still. Books have added a richness to my life that I will never regret. And one of the first things I add back into my days when I am feeling well enough is sharing my love of reading with my girls. It brings me so much joy!

I think that it’s easy when you’ve had a smooth go in your early years to be blind to the pain of the world around you. I think not having perfect health helped me learn empathy from an early age. I had to learn not to over empathize later in life (stepping foot in a hospital would make me feel faint, for example), but true compassion for others is a gift that I pray to keep growing in. Sometimes when you have never faced any significant struggle, compassion can be hard. So I hold dear the empathy the mystery of illness has taught me.

Surprisingly, pain and loss have taught me to value wonder and mystery. While there can be a mystery to the pain we experience in life, sometimes it also points us outward to a bigger mystery – the beauty of our world, and the wonder around us. Until recently, I could never understand why God choose to point to the wonder of the physical world and his involvement in that world as his talking point to Job in the Bible. Job was under immense suffering! Why should he care about the goats giving birth high in the mountains? But as I’ve grappled with my own loss of health, I appreciate more the wisdom of this passage. I don’t have all of the answers why God has allowed me to suffer. In fact, I’d say it was a mystery overall. But somehow out of the mystery of suffering, I’ve come to grapple with the mystery and wonder of God – including through his amazing created world. When very sick, I also don’t care about animals giving birth and God helping animals find prey out in “nature”. All I cared about was God helping me with my overwhelming pain. But as I start to improve and wrestle with the mystery of my illness, the reminder of God’s vast wisdom, love, and power bring surprising comfort, even while it acknowledges the mystery of God’s plans.

I have no doubt that my life would look different if I had not struggled with severe low energy at times in my life, and such a complete health collapse recently. If I dwell on only the losses, what I missed out on can stun me. Heaven is the only place where suffering can be made right, and pain fully disappear, but I do see glimpses of grace in this path I’ve walked. Books, compassion, and wonder are all wonderful gifts to have, and for them, I am grateful.

31 thoughts on “My Lyme Disease Story and How It Changed Me”

  1. Thank you for being so vulnerable and open about something so personal. I have a friend who has suffered for years from fibromyalgia. I’ll share this with him.

  2. Grace be unto you and peace from God the Father and from our Lord Jesus Christ. I just can’t imagine the pain you have endured all these years. Is there no cure for Lyme disease and why did they not test you for it much, much earlier? It makes me angry they didn’t test you for Lyme disease earlier. My hope for you is a rapid and total cure and for this I will pray. God Bless You and Keep You!

    1. Thanks so much for the comment Bill! Sadly, there wasn’t much awareness of Lyme Disease when I was young, so my doctor didn’t think of it. There is treatment for Lyme Disease but when it wasn’t diagnosed for so many years, it can be much harder and a longer journey to treat. Thank you for your prayers! I greatly appreciate it.

  3. Thank you, Kimi, for your thoughts and sharing that with us your readers. I hear glimpses of a kindred spirit, and have head health struggles since childhood, though varrying in severity. God has certainly used these trials in my life as I hear He has in yours as well. Praying blessings and grace and thankful for all He has done.

    1. Beth,

      Thank you so much for the comment. While I’m so sorry that you also have had health struggles, I’m always glad to find a kindred spirit. <3 Thank you for reading, and for the prayers!

  4. Kimi,
    I’ve enjoyed your blog for years and I’m so sorry to hear about this struggle. I myself have undergone treatment for Lyme as well as my husband and our 4 kids. My sisters and brother, their spouses and kids and also my parents have all been diagnosed with Lyme. The thing with my case as well as kids and husband is that we diagnosed it before we had bad symptoms. The treatment did cause die off with my husband and myself and my oldest son, but the younger kids were able to be go through treatment without symptoms. I mention this all because I believe that Lyme is transferred sexually as well as in utero. So if you haven’t thought about it yet, you might want to have your husband and kids tested. I’d be happy to share more about our story if it would be helpful. Best of all, the Great Physician is on our side. Blessings to you and your family, Kimi!

    1. Brenda,

      Thanks so much for sharing your story! What a journey to have so many family members have Lyme. I’m so glad that your youngest didn’t have any herxing! I’ve also been warned about the possibility of Lyme transferring to spouses and children. What a horrible disease. I would love to hear more about your story and what worked for you guys! While I can’t try everything at once, I am always gathering new information to consider for the future. Would you feel more comfortable emailing me privately? You can use the contact form, or if you are signed up for my email list you can just reply to that email! Thanks so much for being willing to share!

  5. Thanks so much for sharing! My daughter also became sick 3 years ago at the age of 10 and was diagnosed with Lyme /co-infections and later mold exposure. It has been a constant up and down battle since. I was also diagnosed with chronic Lyme years ago. We pray everyday for a complete cure but in the meantime realize that God has used our situation to help others and He has brought many people and opportunities to us that we otherwise may not have had. Keep the faith!

    1. Jen, thanks so much for sharing! Lyme is such a beast to deal with, and it seems like mold is often an issue for chronic illnesses as well. I’m so glad that you have seen God move in your lives despite your suffering, but also pray with you for a complete cure. <3

  6. Thanks so much for sharing your story! My daughter also became sick 3 years ago at the age of 10 and was diagnosed with Lyme /co-infections and later mold exposure. It has been a constant up and down battle since. I was also diagnosed with chronic Lyme years ago. We pray everyday for a complete cure but in the meantime realize that God has used our situation to help others and He has brought many people and opportunities to us that we otherwise may not have had. Keep the faith!

  7. Hey Kimi, your story is rather similar to mine. I battled sensory issues, migraines, thryoid problems, allergies and chemical sensitivity and on and on – first felt loads better when changing my diet, but crashed after my second baby and after getting mostly better, crashed really bad after a traumatic miscarriage. I’m doing a lot better following Buhner’s protocol now, but very much on the journey, and trying to figure out how to treat the whole family. Mycoplasma is our biggest monster.

    Your notes on suffering ring so true. So much time on bedrest has forced me to work through a great deal of things and made me a better person in the long run! May God grant continued hope and healing to both of us.

    1. JenP,

      Aw, yes, so many similarities! I’m so sorry that it’s been such a hard journey for you! I think that for some of us, pregnancy and miscarriages can throw our already sensitive system out of wack. It’s so hard to have to deal with the grief of loss of a child, but also the loss of health at the same time. You are right, it’s such a journey. I join you in your prayer for both hope and healing for all of us. Thank you!

  8. Thank you for sharing Kimi! I too have been taught and grown immensely in different ways during my own battle with co-infections, compassion and feeling a greater sense of the smallness-yet-grandness of my life in the world God has created being some of those ways too…Though we don’t understand it always, His ways are always good. I will continue to pray and read…know that when you’re having those bad days, you’re still never more loved and precious to Him. Keep pressing on!

    1. Nicole,

      What a beautiful comment. Thanks so much for sharing! I appreciate you reading and engaging. It’s so good to hear from others in similar situations. <3

  9. Kimi,
    Thank you so much for sharing your story. I want to say that saying, “The struggle is real” really fits what you have been through. I wanted also to share a place I recently found that has had incredible success with environmental allergies and all types of diseases. Since I heard you have a relationship with God, this might interest you. They have free videos you can watch. Amazing healings of Cancer too.

    1. Hey Judy,

      Thanks so much for sharing, I appreciate it! And I’m so thankful that you have found success healing. 🙂

  10. Kimi –
    Thank you for your honesty and courage in sharing your life with us. While I have not personally suffered in the ways you have, I did support my husband during his bouts with cancer. What we learned from those times was that only God can bring healing and peace – both sovereignly and through the gifts of doctors and medication. We have been able to use our experiences as patient and caregiver to provide support to others facing the same diagnoses. I see God using you in the same way. Your experiences will bring hope and an increase in faith to others. May you and your family continue to be blessed by His amazing grace.

    1. Hey Kate,

      I love hearing about how God has used you to provide support for others walking the same path you had too. That’s a beautiful, redemptive path. Thanks for sharing!

  11. Hi kimi i found your food blog quite some years ago and i was diagnosed with lyme December 2012 after searching for years’s been a rough journey ….after hearing you talk about health issues i was pretty sure you had lyme too….I’m still housebound after 7 years this time…still searching researching and trying new things ….wishing you and me and everyone else with lyme to be happy and healthy again…much love to you youngest so who is 15 has just developed a bartonella rash over his Australia they say lyme doesn’t exist…silly fools…it sure does there are thousands of us suffering here in Australia…take care x

    1. Sherrie,

      I’m so sorry for all of the suffering you have had to experience. Lyme is a real challenge – especially when there is so much misinformation and inadequate research in the medical community. I’m right there with you hoping for a better future for all of us! Thanks for the comment and sharing your story!

  12. I love you Kimi! Thank you for sharing your story! I loved what you had to say about wonder in nature and the story of Job. I also didn’t really get that until more recently. ????

  13. I have struggles with an autoimmune disease since I was 13. Even though I know in my head that I am a hard and diligent worker, I still struggle with concern that I am using it to excuse laziness. That is why I knit so much, I believe, to have something to show for the days I can’t do much else, to contribute. In my head I think of it as knitting for redemption, even though I know works buy us nothing. I worry about the days ahead when I may losetoo o much function to even do that.

    1. Dana,

      Hidden autoimmune diseases make it hard not only for others to “see” our suffering, but sometimes we even judge ourselves too harshly!
      I’m so glad you knit. What a beautiful way to create. I hope and pray that you have many more knitting days ahead of you!

  14. Kimi,
    Thank you so much for sharing your story. What type of test was done to diagnose Lyme after it has been present for many years? I am asking because many people in my family have similar symptoms. We also had some mold exposure in our house and it seems to be a very bad combination with Lyme. I haven’t pursued Lyme testing because I’m not sure what type of test to request.

    1. Ruth,

      It’s so tricky, isn’t it? Sadly, mold symptoms are very similar to Lyme disease symptoms, so for someone like me, it can be hard to figure out where my symptoms are coming from sometimes! I’ll email you about the testing!

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