My Lyme Story

Here it is, beginning to end. 

This is the story of my Lyme Disease. Below is almost 7 years of history. Though I’ve tried to condense it as much as I can, it is quite lengthy. 

Here we go! 

Last Updated:7/27/14

The Bite: May 2008

In 2008, when I was fourteen years old, I was bitten by a nymph tick at Rancho Seco Lake, California. I was camping with my Girl Scout troop at our annual Camporee event. After I noticed the tick burrowing into the flesh of my left foot, the Girl Scout nurse used a pair of tweezers to pull the tick out of my skin.  Because I did not get a bullseye rash around the bite, I forgot about the incident.

“I Don’t Know What’s Wrong With You, But Maybe My Very Knowledgeable Colleague Does”: 2009-2011

A few months after the bite, I started getting crippling foot pain in both of my heels. Next came debilitating migraine headaches, fatigue, and muscle pains. Throughout the rest of my high school career, I went from doctor to doctor trying to figure out what these symptoms meant. In the beginning, I had hope every time I went to a new doctor. I would think to myself, “Maybe he has the answer!” I saw 12 different specialists who suggested everything from teenage angst to hypermobility syndrome. Nobody knew what was wrong with me and instead of trying to figure out what it was, each doctor referred me to another doctor. By the end of my senior year of high school, I had been to almost every specialty clinic within my insurance-covered medical group. I extremely distrusted doctors and lost faith in the medical profession. I had no answers, but tried to keep living my life as well as I could.

Me "marching" (more like wheeling) in the Oakland Children's Christmas parade with my high school marching band in 2010. Despite my limitations, I was the flute section leader.

Me “marching” (more like wheeling) in the Oakland Children’s Christmas parade with my high school marching band in 2010. Despite my limitations, I was the flute section leader.

New School, New Problems: Late 2011

I started my freshman year of college at the University of Oregon with a sad resignation that I would never find out what my symptoms meant. I had given up searching for answers and let myself believe that perhaps there really was nothing wrong with me. I settled on not knowing. However, I started getting new symptoms. I was now suffering from terrible traveling joint pain along with everything else I had. My pain was starting to affect my performance in my college classes. How could I do research at the library when I could only stand up for 25 minutes without collapsing? I realized I couldn’t stop searching for the answer.

At least I had a pretty view from my dorm room! Eugene, OR in Fall 2011.

At least I had a pretty view from my dorm room! Eugene, OR in Fall 2011.

Remember That Tick Bite?: Early 2012

My mother, who is awesome and one of my biggest supporters, had been doing a lot of research regarding possible reasons why I had the symptoms I did, and read something about tick bites and Lyme. We decided to go get me tested for Lyme disease. Because we were not getting anywhere with the specialists within our medical group, we decided to search for a doctor outside my insurance company.

My LLMD: April 2012

He’s really fabulous. Every appointment I have with him is about 30-60 minutes long. He explains everything very clearly and I always leave his office feeling better (emotionally). I had never had such a positive experience with a doctor until I met him. On my first appointment, he analyzed my symptoms and tested me for Lyme through IGeneX lab. The test came back… 

I’m Not Crazy!: April 10th, 2012

…positive! I was extremely happy to finally know the answer. I was ready to come up with a plan to get treated.

Antibiotics- Round One- Azithromycin then Ceftin: April-May 2012

My LLMD prescribed me 30 days of oral Azithromycin, followed by 30 days of oral Ceftin, along with strong probiotics and a few other supplements. I also began a completely sugar-free diet. I reacted to the Azithromycin better than the Ceftin, but both of them hit my body hard. I had a terrible overgrowth of yeast and oral thrush; I could hardly open my mouth because of it. I also experienced my first herx reaction. It was so bad, I had to rely on my boyfriend (now ex boyfriend), to feed me and to help me get dressed. I was suddenly doing terrible in all of my classes and almost dropped out of college. I called my LLMD and told him how awful I was doing, and he took me off of the antibiotics. Luckily, as I stopped my antibiotics, I was able to recover some of my strength and make it through the rest of the school year with only one C.

Not having a very great day in June 2012, shortly after I was diagnosed.

Not having a very good day in June 2012, shortly after I was diagnosed.

Learning About Lyme Politics: June 2012

Because my LLMD was outside of my HMO insurance company, I did not receive any coverage for my treatment. Home for the summer, I decided that I would try talking to an Infectious Disease specialist within my insurance company and ask them if they could help me get affordable treatment. I hoped that with my positive blood test result, they would be more willing. All my hopes were dashed when the specialist said that because the tick was on my skin less than 36 hours, I was not bitten on the East coast, and I did not get a bullseye rash from the bite, I do not have Lyme. Bullshit. Also, I was only positive according to the lab in which I was tested, Igenex, and not according to the CDC’s standards. I did not understand the injustice! Later that month, I watched a 2009 documentary entitled Under Our Skin, which revealed just how much injustice is happening across the US regarding Lyme patients, the doctors who treat them, and how insurance companies view Lyme. Even though my situation was not ideal, I learned I wasn’t alone. I also learned that Lyme would be a more difficult beast to tackle than I had originally thought. This was serious business.

Herbals- Round One- AL Complex: June 2012-Present

Back at my LLMD, we decided that I should take a much-needed break from antibiotics and give my body a chance to regain its strength and recover from yeast overgrowth. We decided to try a different route regarding my treatment. The end result was A-L Complex, an herbal liquid antibiotic in which the patient has control of the dose. Starting from 1 drop twice a day, I worked my way up to 11 drops twice a day. I ended up being on A-L Complex for about two years! During this time, I also developed new symptoms. My first cognitive symptom, anxiety, appeared in July 2012, along with my first symptom involving my heart- heart palpitations. Both are very scary and frightening.

Me in my wheelchair in Calistoga, CA in September 2012. This dog just came wandering over and plopped down next to me. Pretty cute.

Me in my wheelchair in Calistoga, CA in September 2012. This dog just came wandering over and plopped down next to me. Pretty cute.

Antibiotics- Round Two- Doxycycline: November- December 2012

After 5 months and 6 different antifungals, my yeast finally cleared up. However, my symptoms had gotten progressively worse. My body hurt all the time, my muscles ached, and I was getting very scary anxiety attacks. My LLMD decided it was time for me to go back on more antibiotics. He prescribed me 30 days of oral Doxycycline. Even though I have a negative blood test result, based on my symptoms, he also decided I may be fighting Bartonella. He informed me that the Doxycycline I was going to take would also help fight the co-infection. The first few days I was on it went fantastic. I had virtually no symptoms, and I was feeling much more energized. However, about a week later, I got a very bad herx reaction, which coincided with dead week and finals week of school. During this herx I experienced brain fog for the first time- in the middle of my Shakespeare final! It was very scary. At this time, my parents were very worried about me continuing college considering how poorly I was doing. For the second time, I nearly dropped out of school. Nevertheless, I was very determined to continue living my life despite the status of my health and convinced them to let me go back to school.

Antibiotics- Round Three- Azithromycin + Plaquenil+ Bicillin LA: January- June 2013

After my 30 days of Doxy, my LLMD had other plans for me. He put me on oral Azithromycin, Plaquenil, and Bicillin L-A injections. I would be hitting my Lyme from multiple angles. I was fairly comfortable with Azithro and the Plaquenil, but the Bicillin had me scared. It is an injectable that has to be administered in a deep muscle, in this case my butt. My LLMD also told me that it would be fairly painful and I would have to have another person administer it for me. Back at school, I struggled to find a person in Eugene that would be willing to inject my butt twice a week. After several dead ends, I finally found a local naturopath that was willing. The first injection hurt so much!! I cried all the way home. However, the longer I did the injections, the less they hurt. After a few weeks of going to the naturopath, I decided to just have one of my friends do my injections. My insurance company wasn’t covering my naturopathic appointments and it was far away from school. By having one of my friends take care of it, I saved a lot of money. I noticed something else around this time too. I was feeling a lot better!! I was able to walk around much more than I used to, my joint pain had practically gone away, and I was doing much better in my classes. I joined a couple clubs on campus and started making more friends. I almost felt like a normal person. However, not everything was so great. My anxiety was completely out of control. I was getting weekly panic attacks and I felt uncomfortable practically all the time. Luckily, my university has great services for anxiety and depression. I saw a psychiatrist who put me on an SSRI (selective serotonin re-uptake inhibitor) called Citalopram. It worked great! Instead of getting anxiety attacks daily, I would only get them about once a month. Fantastic! My other lingering symptoms were fatigue, gut problems, insomnia, and headaches. Despite all of this, I finished off the school year on the DEAN’S LIST! Go me!

My friend and I at a concert I went to. THAT'S how good I was feeling in May 2013. (My feet weren't good the next day, but other than that I was okay!)

I went to see one of my favorite bands in concert with my friend, Shani! THAT’S how good I was feeling in May 2013. (My feet weren’t good the next day, but other than that I was okay!)

Antibiotics- Round Four- Levaquin + Minocycline + Tindamax: June- August 2013

Even though I was doing much better, I definitely was not feeling 100%. Back with my LLMD, we decided that the symptoms I was still suffering from (anxiety, insomnia, gut problems, fatigue, headaches, and foot pains) were all indicative of Bartonella. Based on this, he decided to switch around my protocol to be more geared towards Bartonella treatment. He asked me to start taking Levaquin and Minocycline and to start pulsing Tindamax. Almost immediately after switching to these new antibiotics, I started doing horrible. I was having bad days nearly every single day. A lot of days, I was so weak, I wouldn’t be able to get off the couch. After a few weeks of Levaquin, I developed a bad case of tendinitis, where my Achilles tendons were extremely tender. I told my LLMD and immediately stopped taking it. Luckily with the help of magnesium powder, it went away after about a week or so. I continued on with Minocycline and Tindamax. The whole time was awful and felt like a two month long herx. On top of feeling horrible almost every day, I started showing signs of candida overgrowth again. I developed cuts inside my mouth and white patches on my tongue. It started becoming difficult to eat.

Herbals- Round Two- AL Complex + MC BAR 1: September 2013- July 2014

At the recommendation of my LLMD, I stopped taking antibiotics to give my body a chance to rest. I had taken them for 10 months straight. We made it our mission to get my candida under control while still making an effort to fight the Bartonella. He decided on MC BAR 1, a liquid oral herbal antibiotic very similar to AL Complex, only designed specifically to fight Bartonella.  I worked my way up from one drop twice daily with an end goal of 11 drops twice daily. I’m on 8 drops right now. I also tried various antifungals to try and beat the candida.  With the help of boric acid suppositories, I was able to finally get my vaginal yeast under control. However, I continued to have symptoms that I didn’t have while on antibiotics. My hair was falling out, I had awful tinnitus, I had frequent headaches, and also some of my joint pain was returning.

Antibiotics- Round 5- Rifampin + Bactrim: December 2013- June 2014

I started on Rifampin and Bactrim at my December 2013 LLMD appointment. These two antibiotics specifically targeted the Bartonella, since my symptoms seem to be the most indicative of Bart. Also during this time my Levaquin-induced tendinitis made a reappearance. I woke up on Christmas morning 2013 unable to walk. This side effect can continue up to a year after stopping Levaquin. With magnesium powder and stretching, it is manageable. After a few months of daily magnesium, it finally went away! The Rifampin turned my pee orangey red, which was a bit of a shock when I first started taking it!

In December 2013, I got a new wheelchair! It was a great upgrade!

In December 2013, I got a new wheelchair (and a haircut)! It was a great upgrade!

Although my LLMD and I originally thought that these two antibiotics would really help me with my treatment, I got worse. My foot pain came back, my joints became more achy, and I was getting some really bad brain fog. I started becoming really forgetful and struggled with deadlines. It was also becoming increasingly difficult for me to juggle all of my commitments and responsibilities. However, some things did get better! I wasn’t having anymore headaches and my anxiety had practically disappeared! Overall though, I think I slid back in my treatment journey.

I went to the ER in April for lymph node pain. (See how my neck is all swollen?)  I took this picture because I realized on my cab ride home that the nurse didn't take the heart monitor stickers off before I was discharged.

I went to the ER in April 2014  for lymph node pain. (See how my neck is all swollen?)
I took this picture because I realized on my cab ride home that the nurse didn’t take the heart monitor stickers off before I was discharged. I kept them like battle scar tattoos for a few days.

Antibiotics- Round 6- IV Clindamycin + Flagyl + Doxycycline: July 2014- Present

My LLMD noticed that I was sliding backwards on my Bartonella antibiotics. Maybe I don’t have Bartonella after all? Maybe this is just full-fledged Lyme, or maybe I have another co-infection we didn’t initially think of. He decided to test me for Babesia and another Bartonella test. I haven’t gotten the results of the tests yet, but I think they will be helpful.
Since I am not a full-time student during the summer, we decided to try a different, more aggressive type of treatment: IV antibiotics. Instead of getting a PICC line, which can be an expensive, risky procedure, I decided to get a Hep-Lock, which is a disposable catheter that lasts four days. With the Hep-Lock, which an IV therapist at my LLMD helps me put in my arm, I have been pulsing Clindamyin for four days a week. After four days of the Clindamycin, I rest for three days and take Flagyl. Then, the next week, I get a new Hep-Lock put in and repeat the process. Also during this time, I have been taking doxycycline every day.

At my LLMD getting my first Hep-Lock put in! I named him Henry.

At my LLMD getting my first Hep-Lock put in! I named him Henry.

~~~~~~

It’s been an intense journey. Even though I feel like my body is a prison, having Lyme disease has taught me a lot. I am a more patient, open-minded person and I am more appreciative of small things in life. It has also launched my passion for social justice and made me develop a career goal.

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4 thoughts on “My Lyme Story

  1. Fuerza Sofía, batallas ganadas y más por venir, la guerra al final la venceremos. Suerte en Eugene este semestre de clases en la U de Oregon.

  2. Fuerza Sofi , te vas a curar, tienes muchas ganas de salir adelante y no dejarte vencer . ADELANTE MI LINDA SOFIA !!!!!

  3. Hey Sofi. How’s going?

    I really enjoyed your courage and worth for describing and sharing your Lyme experience. This is a really nice support for everyone which are involved through this disease. Besides, I think it’s also very good for the common people to undestand the influences of it on our lifes. Sofi, in my opinion you are a girl with one of the greatest courage that I never seen before. Thank you very much for your positive attitude. Therefore, I’m pretty sure that you will do a very nice job and resolve with safety the Lyme disease.

    If you need anything, please let me know. You are not only my cousin, you are my friend!

    Cheers

    Pedro Xavier

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