This story was originally published by the Bay Area Lyme Foundation.
Alameda County, CA
Infected: Spring 2004
Diagnosed: Fall 2013
Current health: “Thousands of dollars and years later, I am finally mobile again. I am able to be a mom again.”
Many people know very little about Lyme. I’m going to change that. -Christina C.
The following is the story of one brave family plagued with not one but three (!) diagnoses of Lyme disease. Mom Christina first contracted the disease while hiking in Alameda county (2004). It would be almost ten years before she was successfully diagnosed with Lyme disease and not nearly soon enough to prevent her husband (diagnosed in 2006), and daughter (diagnosed in 2015) from also contracting the disease. As they now all fight valiantly against challenging physical symptoms, they remain as active as possible and adamant about spreading the message about prevention. As Christina shared, “I wanted to include photos of us in nature because I want other people to know and believe that they can continue doing the things they loved before they got sick, to not let this disease take everything from them. We are all in the fight for our lives, for a new normal. We are warriors and someday we will prevail.”
Here follows the story in Christina’s words:
“The beginning of 2004 held such promise for me. I was finally recovered from the difficult birth of my daughter and subsequent ectopic rupture of a second pregnancy in November 2003. I had launched my business and was back on the trail with my canine running partner, Carina. We were climbing hills, cranking out some mileage, and basically loving life.
“Through the years I had pulled many a tick off of the dog but never off of myself. Until March, April, and May of 2004. Which one of those ticks sealed my fate, I will never know. Maybe it was number three or maybe it was all three; in the end it just doesn’t matter. Tick number one was in my shoulder. Number two I honestly can’t remember. But tick number three was in my thigh and that is the one — and only one — that presented with the bullseye.
“Within days I wasn’t feeling well. I felt like I had the flu. I was achy and running just the tiniest of low grade fevers but I wasn’t worried because I was pregnant again and just naturally assumed it was the pregnancy making me feel like garbage. I showed my mom the rash. She immediately told me to go to the doctor. ‘That is a sign of Lyme,’ she said. It’s not often that we can look back on a specific moment in time and think ‘what I wouldn’t give to go back to that exact moment.’ Of course, I didn’t go to the doctor, at least not right away.
“Within days of the bite I began to lose the baby. I went to the doctor, showed her what was left of the bullseye, told her about the tick, the flu-like symptoms, and the fever. I asked about Lyme and questioned a link to the loss of the baby and whether antibiotics should be prescribed. The doctor looked me dead in the eye and said, ‘Lyme doesn’t exist in California. There is no need for antibiotics. Sadly, women lose pregnancies everyday.’ And she sent me on my way.
“The general crappy, flu feelings continued for most of the summer. I powered through. I had an 18-month old and a new business — feeling exhausted was just par for the course. Then, in November, we moved. It was very emotional. We moved from my hometown in the SF Bay Area to middle-of-nowhere Nevada, where our nearest friend was a 45-minute drive away. It was normal to feel sad, a little depressed even.
“I continued to be tired and emotional but as the winter progressed and we rang in 2005 new symptoms began to pop up. My feet hurt. All the time. My runs were getting harder and harder. I couldn’t recover. I was getting headaches, but attributed them to my braces. Food issues were beginning to get complicated like my tongue swelled and throat began to close whenever I ate gluten. I forgot stuff, a lot, and was generally more irrational than usual.
“During this time, we were traveling a lot with my husband’s company. Again, I attributed everything to stress, travel, and being a mom … but I wasn’t the only one who wasn’t feeling well. My husband started getting sick. Weird things like swelling in his hands and feet, constant phlegm, etc. We were in a new house so we began to think we were having reactions to something they used in the build. We thought maybe it was the carpet or the linoleum in the kitchen. We had stuff tested. Nothing. And so, I powered through.
“Late in 2006, I shut down my successful business. I just couldn’t do it anymore. In 2007 my daughter was in preschool so, I went ‘back to work’. I loved it. It was stressful to say the least (I was in the psych profession working with family services), but I was working with such a great group of women. Life was good. Yet, it wasn’t. My symptoms increased ten-fold, literally overnight. At this point, the regular doctors visits and referrals to specialists began. I was fortunate to have an amazing PCP [primary care physician] that tested me for everything, including Lyme. All negative. So, she diagnosed me with Fibromyalgia and she prescribed meds. You name it, I probably took it. Meds for sleep, anxiety, muscle spasms, pain, energy, and everything in between! Everything worked, for a little while. I saw a podiatrist, a rheumatologist, and a neurologist. Everyone asked me if I had seen a therapist. ‘Yes,’ I responded, ‘I share an office with one. I see her everyday.’
“On a trip back to the Bay Area in 2010 we took a family hike in the same park where I had been bit years before. Later that evening at dinner, my daughter complained that her neck hurt. We pulled back her hair and saw the tick. My husband removed it and we continued on with the evening.
“Finally, in the summer of 2011 I hit the wall. I sat in my doctor’s office and bawled when she asked me how I was feeling. I could no longer hold it together. My doctor looked me in the eye and said, ‘That’s it. I have watched you deteriorate over the years. You’re done. I’m putting you on leave.’ Of course I argued but in the end I think I was relieved. I was a mess. I went home and did as I was told, which was nothing. I went back in two weeks, tried to sell that I was better. My husband didn’t agree in front of the doctor; two more weeks of leave. This continued for the entire 12 weeks.
“Ironically, at week 10 I woke up and felt like I had REALLY woken up. For the first time in years, I had a good dose of perspective and realized exactly how far gone I had really been. Apologies were in order. Then the realization kicked in that I was nowhere near ready to go back to work. I went back half time and by Thursday morning of that first week I knew what had to be done. I resigned. My life was about rest which is hard to do when you have insomnia!
“In February of 2012, I had the meniscus in my knee repaired so I rested. Then, in late March, I found out I was pregnant. After all the years of trying it finally happened so, I rested. I spent most of 2012 awake, in bed. November 1st, we welcomed our son and for the first time in years my body was good. Actually, the last trimester and postpartum it was great!
“Around his fourth month the giant woke up. The pain in my feet was back, the knots in my soft tissue were back. The headaches, back. In the fall of 2013 we relocated to Colorado. Another incredibly emotional move. You don’t live in a small town for nine years without building amazing, beautiful friendships. Once more, it felt like we were leaving family. Again. I expected there to be some glitches from the move. Moves are difficult and I wasn’t super healthy. But I didn’t just experience some glitches — I fell apart and it made 2011 look like nothing. I tried to walk my daughter to school one day. It was 2/3 of a mile round trip. I ended up in bed for days. It was no way to live. I was bedridden and I could not accept that this was Fibromyalgia.
“For the first time I began to really search for answers. It was not an acceptable life for me. My family deserved better. I deserved better. I met with an ND [naturopathic doctor] and went through the timeline, again. As soon as I said tick bite, he stopped me. He referred me to a DO [Osteopathic Doctor] in Denver who then ordered the Lyme test through IGeneX. A few weeks later, we had an answer. CDC-positive Lyme. Hooray, right? No. I was too sick to start treatment.
“I met with a new and amazing PCP. We continued my pain management from Nevada and worked on sleep. She referred to me to another DO. This is when I saw a ray of hope for the first time in years. The long road back to a new normal was under way.
“Thousands and thousands of dollars later, I was mobile. I was able to walk and bike ride short distances. I was able to be a mom who is present enough to realize that something was not right with my son… We had him assessed and began early intervention. He starts seeing my DO. He is autistic. Or is it Lyme? A new normal.
“In 2015 my daughter, now 12, tells me she’s tired. She’s sleeping 12-14 hours a night on the weekend. We back up her bedtime by 30-minutes. She’s still tired. Her legs hurt. The dark circles are under her eyes. The summer comes and she’s a bit better but still sleeping a ton. She’s growing like crazy so I think maybe it’s due to that … School starts and I think to myself she needs a few weeks to get back in the groove, 7th grade is a big change. She doesn’t hit her groove and as her Mom I just KNOW something is wrong. We send her sample in to IGeneX. Positive. My baby, by no choice of her own is now a Lyme warrior, fighting for her life.
“I have never cried that hard in my life. Not when my Nonna died, not when I had the rupture, not even when our son was diagnosed with Autism. I cried from a place of motherly pain because I know what’s in store for her. I know there is nothing I can do about it. I know the fight she has in front of her and no mother would ever want that for her child. Ever.
“We tested our son. His came back negative yet we are told not to be complacent. My daughter started treatment and the herx she experienced was terrible. She’s 13 now. She has a life, school and friends. We will start treatment for her again this summer and she will fight. We will be fighting with her and for her because we are all warriors fighting for a healthy life.
“We will beat it one step at a time, together. In fact, we need to all work together, support one another, share treatments-what worked, what didn’t and just provide each other with the love we need to get our lives back. Many people know very little about Lyme. I’m going to change that.”
