Hi Friends, Natalie here. Today we have a very special guest blogger, Karli Ford, joining us to talk about her courageous battle with Lyme Disease. Here at Two Sisters and a Story, we are FIRM believers that there is REAL strength in numbers. NO ONE should have to struggle alone and if we can do our part to help even just ONE more person become aware of the effects of Lyme Disease then we will have done our job. After all, we’re all in this together right?
I have known Karli since we were just little girls and although I am a couple years older than her, she has always been someone I look up to. Karli is FUN, adventurous, creative, giving and has the most genuine love for others. I remember her being a natural at EVERYTHING growing up. I’d constantly think to myself, “WOW is there anything that girl CANT do?” To this day that thought still runs through my mind as I have watched her battle the devastating illness that is Lyme Disease and yet somehow she still finds the silver lining in it all and continues to help others and be the most amazing Mother to her sweet babies. So do yourself a favor today and read Karli’s story, you’ll be so glad you did.
Take it over Karli!
My Name is Karli Tyson Ford. I have been struggling with Lyme Disease for several years and since May is Lyme Disease awareness month I thought I would share a little about my story. Here is a little timeline of how my journey with Lyme began.
In 2011 I was living in Florida serving a mission for my Church. Days as a missionary are very tiring. You wake up early and go to bed late- spending your day walking/biking and serving others. One day I woke up with a sore throat and thought it would pass. I took 5 day course of antibiotics and waited to get better. (I’ve had a poor immune system since I was little and seemed to catch everything- in every case before, antibiotics seemed to kick it.) Well… a few weeks later I still felt sick and felt very weak. I just thought- this missionary life is just too busy and I am not giving my body a chance to heal and catch up. I tried to slow things down a bit and I rested as much as possible. Well- eventually I was practically sleeping all day. My body ached and no matter how much sleep I got, I was still tired. I had a constant headache and no stamina. The joint aches worsened, and for about a week I couldn’t move my wrist. It felt like it was broken even though xrays were normal. After about a month we went to a doctor to try and get to the bottom of things. The doctors in Florida didn’t find anything wrong- so I was sent back home to Utah to see and Infectious Disease Specialist. He tested me for everything under the sun- and found nothing. He told me that I probably had some virus and I just needed to wait for it to pass.
That began a journey down a long road of many doctors, many diagnosis’, and many unanswered questions. Between June 2011 and October 2013 I saw over 10 doctors and Lyme was overlooked with all of them. I was diagnosed with Fibromyalgia, Chronic Fatigue (Systematic Exertion Intolerance Disease), non-specific autoimmune disease, and finally Hashimoto’s disease in October 2013. With that, I was so happy to finally have a diagnosis that had some tests to back it up. I followed the treatment plan for several months but didn’t notice much difference. I wasn’t convinced that Hashimoto’s was the answer.
During this time I was going to college at BYU in Utah. I began my education there before my mission and was able to study hard and get good grades. After getting sick- it was a much different story. I would try to take a full class load and end up dropping almost all my classes because I couldn’t keep up. No matter how hard I tried and how much I studied- I couldn’t retain any information from lectures, did poorly on homework and tests, and was scraping by to pass. Something that was totally out of the norm for me.
Living in a college town, everything revolved around your social life… well not for me. I rarely left the house and spent most of my days in bed with my puppy. (I adopted him when things started to spiral downhill and he has been a comfort and companion since the day I brought him home!) I tried to get out with friends on better days, but that was a rare occasion. On one of those better days, I met my future sweetie Joe. We dated for several months and were married in August 2013. He didn’t quite know what he was getting into marrying me, but from the day we met he has been so supportive and understanding of all my “baggage”.
After getting married I slowly started to see a decline and just seemed to get worse and worse. A few months after feeling like this I found out I was pregnant. I continued to feel sick- but doctors would just tell me it was because I was pregnant. I knew that there was more to it- I wasn’t ready to give up. It wasn’t long after that I considered Lyme.
It was tricky to find a doctor that would be able to do the test for me. I quickly learned that testing is pretty unreliable, and it is imperative to find a Lyme disease doctor or an LLMD (Lyme Literate Medical Doctor). I did over 100 different lab tests and found an amazing doctor to help me begin this journey.
At this point I was 6 months pregnant. Feeling very overwhelmed about being a new mom, having a new diagnosis, and realizing I had a long road ahead of me. Not to mention the stress and realization that I may pass the disease onto the baby. I was on a few medications during pregnancy and also had a C-section to prevent any transmission during birth. Everything went well and we hoped for the best for our little guy. (Two and a half years ago there wasn’t much information available for Lyme and pregnancy, and while there still isn’t a ton of info available now, there is more than there was back then. )
A month after having Cannon, I had surgery to place a Hickman Line- a semi-permanant IV line that would allow me to do IV treatments on my own at home. I did these 3 times a day and was hooked up on an average of 6-8 hours a day. These type of treatments can be compared to chemo. They create a severe die-off reactions causing fevers, migraines, extreme fatigue, nausea, and aches to name a few 🙂 I was on several supplements and an extremely strict diet as well to help manage symptoms and herx reactions. It was an extremely difficult few months, especially with a new baby and being a first time mom, but for those of you who’ve been following my story since Cannon was born, know that He was a TOTAL blessing and helped me through each day.
Because my IV line was placed in my jugular vein, it was very important to keep everything clean at all times because any infection I may get would go straight to my heart and spread quickly to the rest of my body. I wasn’t able to get it wet for a year. No real showers for a whole year… can you imagine? I cut my long hair, and got really good at spit baths! Ha! (Once it was removed, taking a real shower was INCREDIBLE! Words can’t describe that moment!) I changed my dressing (bandage) 1-2 two times a week with the help of my sweet husband Joe! I was on a combination of 10 different IV antibiotics for a total of 6 months straight and did weekly treatments 4 months after that!
I definitely got worse before I got better, but eventually I saw some progress little by little.In the spring of 2016 I got pregnant with baby #2. Right before getting pregnant, I felt the best I had in years. I was able to go to the grocery store, do light exercise, make it through the day without a nap, and was starting to feel like myself again. The last year has been the best year I’ve had since initially getting diagnosed. Pregnancy made me feel amazing and this i’ve been able to do so much. After being sick for so long, I was humbled and amazed to see my body being able to hike, bike, run, and most of all- have another baby. She is an amazing reminder of that. She was born in December 2016, and since then I have started to see a slight decline. After such a great year and seeing symptoms creep in, I am reminded that this is a lifelong battle and i just need to take the good days as they come. I am building a new team of doctors to help me stay on top of things and hopefully catch it before I completely crash again.
We are on a new journey now as Cannon was recently diagnosed. Lyme can be passed during pregnancy, but we were hoping that there was a chance He didn’t have it. Despite a negative test when he was a newborn… something inside me always knew that he did. I noticed at about 18 months that things weren’t quite right. He was always sick, asleep for about 85-90% of the day, food went right through him, and the list goes on. The feeling he had when he was born was confirmed. I remember just wanting to throw up when the doctor sowed me the bloodwork. It is a miserable disease with not a lot of resources and no cure. I am hopeful since we caught it early that we can prevent any serious damage to his body that will cause him problems later in life. We are still in the beginning stages of his journey and in a few months we will test Crosby. (By then, my antibodies will no longer be in her system.)
People often ask me what it is like to have Lyme disease. Try and imagine how you feel when you have the flu- achy, sweaty, fevers, no energy. Lyme is basically like that- just all of the time. I got to a point where not every day was like that, but that is what a bad Lyme day looks like. Your memory also sucks. That is one thing that has been a struggle for me and some of my other lymie friends. An unexpected symptom. So that translates to lots of people as “flaky” but really- it is just hard to stay on top of life sometimes. People always say “but you don’t look that sick” and that is a hard pill to swallow. I would almost rather have green spots all over my body to illustrate that something IS wrong. People often say the same thing about Cannon- “Oh, He can’t be sick…. he is so happy.” Well you can be sick and still be happy. Lyme is a disease where most of the symptoms are internal and may not be as obvious. However, be sensitive to others who are struggling with any type of autoimmune of chronic illness.
While this is something that will effect my life forever, I feel so thankful to have gone through what I have. I have learned a lot, met amazing friends along the way, and have been able to be a resource to many people around me. I am SO thankful for my husband Joe and his constant patience, support, and understanding. I feel so blessed to have found him and am beyond grateful that I have the opportunity to be a mother. Those two little ones get me through! I also appreciate all the support from family and friends. My brain is fried from the Lyme- so I hope this all makes sense! If you have any questions, don’t hesitate to reach out. @koko.ford @lyme.away email@example.com
- Is there a cure? Not yet- some people do treatment and have permanent relief with only a few lasting symptoms. Others experience relapses. I always tell people that I am in “Remission”
- Can Lyme be fatal? Yes. Especially if it attacks vital organs and the central nervous system.
- How is Lyme transmitted? Ticks, mosquitos, sexually, during pregnancy, breastmilk.
- What are common symptoms? fatigue, joint pain, muscle aches, heart palpatations, brain fog, hair loss, dry mouth, the list goes on. for more info checkout this link: http://lymediseasechallenge.org/symptoms/
- Do you have to have a “bullseye” rash to have Lyme? No- over half the people with Lyme don’t recall having the rash or even finding the tick
- How did you get Lyme? My mom tested positive after I was treated, so I could have got it from her. Or I could have been bitten at some point
- Is Lyme only on the east coast? NO- it’s been reported on every continent and in every US state except Hawaii.
- For more Facts on Lyme, visit this link: http://lymediseasechallenge.org/the-facts/
A few things I would want people to know that are struggling with Lyme, were recently diagnosed, or feel that they should be tested:
- REACH OUT- find others who have Lyme. Rely on their advice and experiences until you find your footing. It is all so overwhelming
- EDUCATE YOURSELF – because of the nature of this disease, the stigma, and the overall lack of knowledge in the mainstream medical world, you have to be your own advocate. There are numerous treatment options and it’s important to find what is best for you.
- My favorite resources are two books written by Richard Horrowitz “Why Can’t I Get Better?” and “How Can I Get Better?”
- Find an LLMD- no and infectious disease specialist WON’T cut it. you can go to ILADS.ORG and request a list of LLMD’S in your area. If you had cancer- you’d see an Oncologist or cancer specialist…. same thing goes for Lyme.
- Eliminate stress as much as you can, simplify, and rest as much as possible.
- Diet is HUGE. Plan ahead. Meal plan.
- Stay off the internet. It can be scary… find a few reputable sites and stick to it. lymediseasechallenge.org is a great resource.
- Be patient. It took me 6 years to finally feel “OK” again. It is a long road- and a lifetime trial. Rely on others in the Lyme community for strength. Reach out if you need help. Learn to let others help you.
- There is HOPE. I have two beautiful kids- they may have to endure similar things I’ve had to do, but I am SO blessed to have them in my life.