Backstory to the Present

Hello Internet! As I am new to the blogging world, it seems only fitting that I introduce myself before I dive into the story.

I’m Emily, and I’m currently 22 years old. I recently graduated from The University of Georgia in May of 2013 with a B.A. in English. Some of my loves include the Redcoat Band and chocolate, but those aren’t the reasons that I’m writing. I’m writing because I was diagnosed with Lyme Disease in August of 2013, and I wanted to share my story about my battle with Lyme.

Pre-Diagnosis:

My story (kind of) begins in February, when I was first diagnosed with mono. I battled fatigue  through the end of my senior year at UGA, and things started looking up by graduation. I went into May with more energy, and was able to have a somewhat normal beginning to the summer. It included a camping trip (where I may or may not have encountered the tick that gave me Lyme), several beach vacations, a trip to California with family. I even wrote the routines for and taught a high school colorguard. However, I noticed in June that I still wasn’t feeling very well – I fell asleep on a bench in Disneyland as well as in the middle of a colorguard rehearsal. By July, I figured it was time to head back to the doctor to see what was up.

I went to the my university’s Health Center first, as I had just graduated. They did a blood test to see if I was anemic. After that came back negative, the doctor told me that it was probably just a relapse of mono. But with my past history and lack of confidence in the Health Center, I decided to head to a different doctor.

I then went to a walk-in clinic to see if they had any other ideas. They did the same thing – blood tests to make sure all of the standard tests were normal. Nothing came back abnormal with these blood tests, so they sent me on my way and told me, again, it was probably just a mono relapse.

After a few more weeks, I noticed that I was beginning to feel light-headed and dizzy for prolonged periods of time. This hadn’t ever happened during the time where I had just mono; it got to the point where it was so severe that I ended up having to quit my job because I couldn’t concentrate. Thus began the search for another doctor.

One of my roommates told me about the doctor’s office she goes to, so I scheduled an appointment with them for the following week. I went to the nurse practitioner at the practice, and he was was the first person that took my complaints seriously. He ordered blood tests for a variety of possibilities as opposed to just the standard tests. When the results came in, I had tested positive for Parvovirus (otherwise known as Fifth Disease, which I had when I was little), Mono, and Lyme. In addition, I also had an abnormal ANA test, which could be indicative of an autoimmune disorder, such as Lupus. The Parvo and Mono positives were most likely because I had contracted both viruses in the past, and the antibodies were still present. The doctor prescribed three weeks of Doxycycline for the Lyme, and referred me to a Rheumatologist to find out more about the abnormal ANA test.

Post-Diagnosis:

By this time, it was around the beginning of August. I finally had a solid reason as to why I was so tired, light-headed and unable to concentrate. I was relieved and nervous at the same time. I knew I wasn’t going crazy and that there was something medical causing all of these issues, but I was anxious about the fact that I may have some sort of auto-immune disorder. I began the Doxycycline and scheduled an appointment with a rheumatologist my aunt suggested.

After a week or so of taking the antibiotics, I began to feel a little better. They made me nauseous at first, but I began taking them with a little food and all continued on smoothly.

I went to the rheumatologist, and luckily all of my tests came back negative; my ANA test was a false positive and I had no autoimmune disorders. I finished the Doxycycline, and felt as if I was going to put the summer of sickness behind me. But the Lyme had a different agenda.

After a few days of ending the antibiotics, I began to feel tired again. A few days later, the light-headedness came back. I already had to schedule a follow-up appointment with my doctor, so I went ahead and made the appointment with the intention of letting him know that I was starting to feel poorly again.

On September 16th, I went in to the appointment prepared to continue fighting against the Lyme. However, I had my appointment with a different doctor, as the nurse practitioner that diagnosed me had just left the practice. Because of this, I was placed with the doctor who owned the practice. At the appointment, I told him my story – that I had finished the antibiotics, and that I still wasn’t feeling well. The doctor did an extremely poor job of listening. He kept trying to imply that my fatigue and cloudy mind were because I was depressed, he made inappropriate comments about my activities (including insinuating I had been drinking at a Braves game when I hadn’t and that was why I felt so terrible when I was out of the house for a few hours), and told me I should be grateful that I didn’t have an autoimmune disorder. He assured me that I should be cured of Lyme because I finished the antibiotics. He then sent me away and told me to come back in a month or two if I still wasn’t feeling better. I left the doctors office feeling dismissed, dejected, and frustrated that I was condemned to a month or two of feeling mentally confused and tired.

Now my mom has been fighting this battle with me along the way, making trips back and forth from Athens to Atlanta for the rheumatologist and doing an extensive amount of research about Lyme from home. When she heard about the doctor’s response, she immediately went into ‘mom mode’, expressing her anger at his actions and looking for the best doctors possible to make up for what this specific doctor had dismissed. She made an appointment for me with a neurologist in Athens for this upcoming Monday, September 30th.

The Present:

That’s what brings us to this week. My mom had come up to check on me on Sunday to make sure that I was doing okay. The only thing that had really changed since my appointment was that I started developing pain in my right hip – joint pain similar to arthritis is common in Lyme patients. However, on Monday, things began to get worse. I woke up with hip and leg pain, had a low-grade fever all day (99.0 to 99.5) and was so tired I didn’t want to move. Towards the end of the day, the bottoms of my feet had a strange sensation (not like burning, but more tingling) and my fingers were losing grip strength and I couldn’t type because they wouldn’t press the keys down hard enough. This was enough to send me back to the doctor.

Yesterday, on 9/24, I had an appointment at the same practice I had been going to, but with the new nurse practitioner. My mom came with me this time, armed with a few months’ worth of research and a list of questions. The new nurse practitioner was much more helpful than the doctor I had seen previously; he listened intently, took notes, and showed interest in my case, including asking for copies of the IDSA and ILADS guidelines. (Side note: The IDSA is endorsed by the CDC, and states that the three or so weeks of Doxycycline is the standard treatment for Lyme. The ILADS came about in response to this, claiming that the three or so weeks is not final, and a person with Lyme needs treatment until the patient feels better. Basically, the ILADS guidelines are better, but the IDSA is supported by the CDC. This needs to change.)

The nurse practitioner prescribed me another three weeks of Doxycycline, Mobic (a pain killer) for my hip, and samples of Lyrica in case the nerve issues continued. He also referred me to an infectious disease specialist to try and cure the Lyme.

This morning, 9/25, I woke up from a nap to find that the left side of my jaw was numb. Facial paralysis can also occur in mid to late stages of Lyme. After calling the nurse practitioner, he told me to take the Lyrica until I see the neurologist on the 30th. Luckily, the feeling in my jaw seems to be coming back slowly as of right now.

The Future: 

As of right now, I have an appointment the third week of October with an infectious disease specialist. My mom is currently helping me to set up an appointment with a Lyme Literate Doctor in North Carolina. And I have an appointment with a neurologist in Athens on the 30th. If none of these doctors can help, it’s possible that I will head up to Iowa to live with my Dad for a while and try to find a doctor up there that can help, as Lyme is more common in Iowa.

While I’m no where close to the end of this battle, I can say I wouldn’t have gotten through it without support. My boyfriend has been with me through it all (he skipped class today for me when I was freaking out about my face earlier), and my roommates have always been willing to go and get me dinner or keep me company when I’m not feeling well. Finally, my mom has done more research than I probably did the entire time I was in college and scheduled more doctor’s appointments in the past few weeks than I can count. The biggest thank you goes out to all of them.

So overall, thanks for sticking with me through this novel of a post! It’s definitely been therapeutic getting this all in writing – it is a pretty scary time when your face goes numb and your fingers won’t type. I’ll keep updating as I see the doctors and as more progresses.

Until then, use bug spray, pull your socks up over your pants when you’re in the woods, and keep Lyme prevention on your mind!

– Emily

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7 thoughts on “Backstory to the Present

  1. Hang in there, Emily. I want you to know you can have real hope to get better. The hardest part, as you’ve already discovered, is finding the right LLMD to get you on a treatment plan. This past January and February I was bedridden with Lyme, and this morning I went for a run (my 3rd one this week). I am hopeful the LLMD in NC will be the ticket for you. I’m cheering for you!

    • Thank you Jonathan! It’s been really helpful hearing from my mom about you and Amy and both of your journeys. Glad to hear that you are both feeling better, hoping I can join you guys at that point soon!

  2. I think it is wonderful that you are sharing your story! Putting it in writing will not only help you on your journey to wellness, it also has the potential to help many others who are dealing with similar circumstances. I have Lupus and it took many too many doctors, too many years to diagnose me correctly. I will be following your story and keeping you in my prayers. Keep hope in your heart ~ the best days of your life await you!

    • Thank you! Are you Megan’s mom? – I remember her giving me information about the tea she said you used to help symptoms when I was waiting to find out about the blood test results from the rheumatologist. Either way, I completely agree about the fact that it takes so many doctors, and thank you again for your support!

      • Yes, I am Megan’s mom. She has been very concerned about you. If you will send me an e-mail with your address, I will send you a booklet about the Essiac Tea that I use. It is used to treat many other conditions and it has done more for my fatigue, painful joints and inflammation than anything else I have tried. My e-mail is tamie325@aol.com. (P.S. that typo in my previous comment (the extra “many”) has been driving me crazy!) I hope your jaw/face is much better today and you are feeling as good as possible. Sending you love!

  3. Emily, I am thinking of you today. I hope your appointment with the neurologist is informative, productive and encouraging. I know your mom from California and am aware of her formidable abilities in research and intelligence. I rather expect her daughters take after her in this regard. I miss your mom and send all the best to you and Allison. I also wish you a return to good health as quickly as possible. I’m pulling for you, Emily.

  4. Hey Emily!

    My uncle has been battling Lyme’s very severely for almost two years and has had the disease for many more than that. His went untreated for a long time and things are not great at this point. I say all of that to say that if want to get connected with a family that has been in this Lyme’s battle for a while, I’d love to connect you with them. Praying for you old friend!

    Codie

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