My Story 04/18/2012Posted by thetickthatbitme in Diagnosis, meta-blog, Treatment.
Tags: Anaplasma phagocytophilum, Arthritis, bladder, Borrelia, Ceftriaxone, choline, diet, Entamoeba histolytica, IV antibiotics, neurogenic, spinal, subtraction osteotomy, tick
Like many people who have suffered from tick-borne illnesses, I struggled with my symptoms for a long time before I got a diagnosis and effective treatment. At the time when I hypothesize I was infected—I say ‘hypothesize’ because I never discovered a tick or a tick bite, I never had a rash, and I never had a fever—I was already dealing with a number of medical problems that had begun in my early twenties. I’ll save all the gory details for another time, but my laundry list included irritable bowel syndrome (later diagnosed as an Entamoeba histolytica infection and treated with Metronidazole), a dysfunctional bladder (still unresolved), a spinal deformity (for which I underwent major surgery in 2010), and a ptosis in my right eye.
In the summer of 2009 I had finished graduate school and started my first professional teaching job. I’d been suffering from bladder and bowel issues for several years and had begun seeing an urologist and a neurologist who were trying to figure out if my problems were neurological, and if so, what to do about them. I spent the Fourth of July weekend in Yosemite National Park on a girls’ retreat with some friends from high school. We stayed in a yurt—with bunk beds—and hiked two or three trails a day for several days. I remember having a head cold that I picked up on the plane ride from Long Beach to Oakland and blowing my nose all night. I remember being eaten alive by mosquitoes one morning, despite having worn bug spray. I don’t remember any ticks, but I’m not much of an outdoor girl, and at the time, my tick-awareness was nonexistent. The kind of tick that bit me was likely a soft-bodied tick, the kind that fall off when they’re done, so it’s understandable that I never saw it. If there was a fever or a rash, I didn’t notice them because I was already sick and swollen with mosquito bites.
This is when I believe I was bitten, but there is really no way to know. According to CDC reports, the area of Southern California in which I live is known to be infested with ticks that carry Borrelia hermsii. I could have been bitten while walking my dog or sitting at a picnic table in the park.
After my Yosemite trip, I returned to LA and the neurologist, who referred me to a neurosurgeon. The surgeon, after ordering MRIs, concluded that I was cursed with a spinal column that was too long for my spinal cord, which was causing the cord to stretch like a rubber band and causing nerve damage that might account for the bladder and bowel problems. After much convincing (and much freaking out), I decided to undergo surgery to shorten my spine the following summer. At the time, I was under a lot of stress, trying to balance work, my teaching credential program, my relationship with my boyfriend, and routine doctor visits. If I was exhausted, I attributed it to this balancing act, not to the infection that was, unbeknownst to me, festering in my bloodstream.
The spine surgery was traumatic–nine hours face-down on the table, nine days in the hospital–but successful. My mobility was impaired for the first six months. I wore a hard brace until December and a corset until February. I was able to drive (and teach again) by September, and my life got back into full swing with student teaching, paid teaching, and two other part-time jobs. When I wasn’t working, I spent most of my time lying on my back in bed. I got an iPhone so I could be more productive in that position, and most of the time, friends who wanted to hang out came to me. After the first six months, when my surgeon said–according to imaging–that the bone had completely healed, I wondered why I was still so tired and achey all the time. I was having trouble getting up in the mornings, and I wasn’t making expected progress in cutting back on my pain medication. Maybe it was just stress, I reasoned. Maybe I was depressed. After all, at 25, my life hadn’t exactly panned out the way I’d planned it. Maybe it was part laziness. That was the conclusion of one of my mentor teachers. I had no real framework for understanding what was happening to me, so I just tried to push through it.
A little more than a year following my surgery, I went up to my parents’ house for a summer visit. I’d had the second of two eye surgeries in May to correct the ptosis, which so far has stuck–no more ptosis. (The surgeon attributed my ptosis to having worn hard contact lenses as a teenager.) School was out, and my back was doing all right, but I felt perpetually exhausted. I helped out at my dad’s medical practice for a week, and he ordered some blood tests for me. I didn’t find out the results until I got home to LA. Three little surprises: 1) Entamoeba histolytica, my parasitic souvenir from my time studying abroad in China; 2) Borrelia hermsii, from a tick I’d never seen evidence of; and 3) Anaplasma phagocytophilum, another tick-borne infection.
We treated the Entamoeba histolytica with a course of Metronidazole, an oral antibiotic and the Anaplasma phagocytophilum with three weeks of Doxycycline. The treatment for Borrelia hermsii was 42 days of intravenous Ceftriaxone therapy.
The treatment of tick-borne infections with IV antibiotics is controversial because research, professional guidelines, and doctors’ practices based on their experiences treating these diseases often contradict each other.
The CDC does not have specific guidelines for the treatment of Tick-borne Relapsing Fever (TBRF), the name of the illness caused by a Borrelia hermsii infection. Here’s what the CDC has to say about treatment procedures: “Experts generally recommend tetracycline 500 mg every 6 hours for 10 days as the preferred oral regimen for adults. Erythromycin, 500 mg (or 12.5 mg/kg) every 6 hours for 10 days is an effective alternative when tetracyclines are contraindicated. Parenteral therapy with ceftriaxone 2 grams per day for 10-14 days is preferred for patients with central nervous system involvement.”
You’ll notice that they only recommend one to two weeks of antibiotic therapy, in contrast to the six weeks of therapy that I received.
The Infectious Disease Society of America doesn’t have treatment guidelines for Borrelia hermsii, but they have guidelines for its Lyme Disease-causing cousin, Borrelia burgdorferi. They recommend treating what they term “Lyme arthritis” with Doxycycline, an oral antibiotic, for 28 days. Treatment suggested for “Late neurologic Lyme disease” is intravenous Ceftriaxone for 2-4 weeks.
Many of the patients that I met in clinic had tried oral antibiotics—sometimes for months at a time—with less than stellar results. Others had been given intravenous antibiotics on an inconsistent basis (for example, Monday through Friday, but not on the weekends). The patients I met who got better were ones who had had a minimum of 28 days of IV antibiotic therapy.
I can’t prove anyone wrong or right, and I am most certainly biased as a patient and a doctor’s daughter, but I can point you to facts and information that may help you in your own journey to health. So here is an abbreviated description of my experience being treated for Borrelia hermsii by an experienced infectious disease specialist:
I came to the clinic every day for 42 consecutive days, except for the day that I had gallbladder surgery. I know you must be thinking the Ceftriaxone caused my gall stones, but the stones were revealed to me by an ultrasound that was done in LA two weeks before I started treatment; they were probably brought on by a combination of heredity–my mother had hers out–and my weight loss following back surgery.
The doctor prepared the drug in a sterile hood. He used a butterfly needle (which is very small as needles go) in the top of my hand. It wasn’t very painful for me, and I’m not squeamish, so the process was not traumatic. Each day, the drug infused over about 45 minutes. The doctor said this method was better than an injection because it lowered the risk of adverse reaction. If I’d had any problems, they could have switched me to saline quickly.
The first two weeks were the most difficult. I was still extremely fatigued, and I began getting more arthralgias (aches and pains) in my wrists, hips, knees, and ankles. It was explained to me that Borrelia like to “hide” in joints, and my pain probably meant that the bacteria were dying. Knowing this, I could reluctantly accept the pain as a good sign.
In week three, I had my gallbladder out. My surgeon was very talented and did the laproscopic procedure, so it only took a few days for me to get back to normal. They gave me Ceftriaxone through IV in recovery, so I didn’t technically skip my infusion that day.
At the end of week four, I started to notice that I had more energy. I was working during the day, helping my dad, then coming home at night and doing my own work (I do freelance editing when I’m not teaching.). It was the first time in more than a year that I felt truly alert and productive.
Weeks five and six went by more quickly. I found myself laughing more, and even singing in the clinic. It helped that there was a piano there. For the first time, my back felt almost as good as it had before my surgery. And my mind…well, I’m sure you can tell how sharp I am based on my excellent writing skills.
For those who believe in more holistic treatment methods, I’ll note that a few other components played a role in my recovery:
1. Exercise: I joined the small pool where my mom takes arthritis water aerobics classes and went with her two to three times per week. The warm water made my joints feel better, and the exercises strengthened my muscles and improved my balance. Because the class is zero impact, I didn’t get sore like I would from walking the dog or playing a sport. The class I took was designed by the Arthritis Foundation and is offered at hundreds of facilities around the country. Though you could say I had a reactive arthritis, you don’t have to have arthritis to take the class. You do, however, need a doctor’s approval.
2. Diet: My doctor recommended a diet high in choline. Choline is an essential nutrient that is classified as the newest member of the B Vitamin family. It’s important because it is required for the proper transmission of nerve impulses from the brain through the central nervous system. You can find information about high-choline diets here.
3. Fun: During the six weeks of my treatment, I tried to find ways to relax and fun things to do. I attended a musical and several movies with friends. I read some “guilty pleasure” novels (you know, the kind with romance, vampires, etc.). I took walks on the beach with my family. I also benefited from the relaxed atmosphere of the infusion center. The doctor invited a piano player to entertain patients, and a few patients, including myself and a former opera singer, often sang along. There were a handful of regulars, like me, “doing time” for 28 days or more, and they became my friends. We swapped stories about doctors, work, and life. We gave each other nicknames and told each other jokes. My six weeks of treatment were filled with song and laughter. Could that have affected my prognosis? If I were a betting kind of woman, I’d bet on it.
I am still a work in progress. I’m back home in LA and feeling better than I’ve felt in a long time, but I’m not done with doctors. I’m determined to stay on top of everything from now on. Never again will I let one discouraging doctor visit interfere with my care.
I invite you to stay tuned and learn with me as I gather articles, resources, and stories from others.
Why I’m starting this blog 04/17/2012Posted by thetickthatbitme in meta-blog.
Tags: Borrelia, hermsii, illness, patients, tick, tick-borne
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1. When I first started having problems, I thought I was alone. I even thought, some of the time, that the problems were just in my head. I thought my overwhelming fatigue was just from me working too hard. When I took time off, I thought the fatigue was just laziness. I thought the pain was just from the back surgery I’d had, even though I was supposed to be fully recovered within 6 months and my surgeon said my images looked good. If I hadn’t had the help of my family, especially my father, who I’m lucky is a physician specializing in infectious disease, I would have gone undiagnosed for who knows how long. So here’s reason number one: awareness.
2. Knowledge is power. Most people don’t understand until they get really sick how difficult doctors, hospitals, and insurance companies can be–most of the time, dealing with any of the three just makes me feel sicker! I want to share with you what I’ve learned during my many patient experiences, in the hopes that that information will help you advocate for yourself.
3. There’s a lot of misinformation out there–and by out there, I mean not only on the Internet but also in books and some doctors’ offices. I am not a physician, but I am a smart cookie; I read voraciously, ask a lot of questions, and take good notes. I’m an educator with a research background, and I understand more about statistics and research methodology than the average bear. I also have access to a variety of medical journals and other resources that the average patient does not. I am not the sort of person who’ll let a question go unanswered if I can help it.
4. When I started getting treated for Borrelia hermsii, my doctor invited me to join a support group for other patients. I don’t think I’d ever joined a support group for anything prior to this, so I wasn’t quite sure what to expect. A lot of doctors don’t really endorse what I call the touchy-feely aspect of patient care. They underestimate the power of the patient’s emotional state. Lucky for me, my doctor isn’t like that. He is professional and runs a clean clinic, as every doctor should, but it is also a place filled with laughter and music. When I met the other hermsii patients, who were in various phases of their treatment, it was suddenly as if I’d broken through a wall. When it comes to most of my other health problems, I don’t have any friends or colleagues who can relate–most people have a hard time believing I’ve gone through what I have at my age. At the hermsii group, though, they all connected with me instantly. Everyone had something to contribute. Everyone listened. I was amazed at how educated my fellow patients had become about our affliction and at the sophisticated nature of the questions that they posed to the doctor. As a teacher, I marveled at the dynamic of this learning community. As a human being, I marveled at the healing that went on in that hour and a half, without drugs or machines (though I don’t deny the necessity of IV antibiotics in the treatment of hermsii). During that meeting, I wished that every patient with a tick-borne infection could be in that room with us to ask questions, to listen, to find proper treatment, and to heal. This blog is my effort to expand that room to include all patients who need answers and who want to share their stories.