What a difference a year makes! 07/14/2012
Posted by thetickthatbitme in Patient Stories, Treatment.Tags: Borrelia, Borrelia hermsii, brain fog, choline, energy, healing, health, IV antibiotics, Lyme Disease, medicine, pain, Relapsing Fever, ticks, treatment
2 comments
A year ago yesterday was when I started my treatment for Borrelia hermsii. I left my home, my boyfriend, and my dog to stay with my parents so I could get treated with 42 days of IV antibiotics. Looking back on this time last year, so much has changed:
1. My knowledge level. I’m embarrassed to say that when I started treatment, I couldn’t even tell you if a tick has eight legs or six. (I never saw the ticks that bit me.) I knew nothing about the habitat or biology of ticks, and I didn’t know how many different diseases they can spread. I didn’t know how to spell Borrelia. Pretty much all I knew was that I was infected with a bacterium that was like Lyme but not Lyme that causes Relapsing Fever. This was strange to me because I never remembered having a fever–cold sweats, yes, but no measurable fever. I’d had IVs in my hand before when I’d been hospitalized, but I didn’t really understand what an infusion was, or that it mattered which vein a needle goes in. I had no idea what PubMed is. I’d read maybe three medical journal articles in my lifetime. Over those six weeks, I learned a lot from my doctor and other patients, and I kept learning through support group meetings and emails. Finally, I got up the energy and courage to launch this blog, and well…you know the rest.
2. My energy level. The fall of 2011 was when I should have realized something was wrong. I was student teaching in the mornings and teaching my regular classes at night. I remember what a struggle it was to get out of bed in the morning. Getting dressed was like running a marathon. I’d had back surgery the previous June, and I was in this hard brace that everyone called my turtle shell. But it wasn’t just my back that was a problem. Even with eight to ten hours sleep, by noon, I was struggling to stay awake. My 30 minute drive home on the freeway was terrifying. The only thing that kept my eyes open most days was if I was constantly chewing something, so I tried to always have snacks with me. When I got home, I’d take a 90 minute nap–which was never enough–and then I’d get up and go to work again. When the semester ended, I thought I would catch up on rest, but even only working part-time, I was constantly fatigued. I spent any time that I wasn’t working in bed. When I had to go on a business trip in March, I freaked out. How would I handle being on someone else’s schedule? How would I go six or seven hours without lying down? By June, I was freed from back braces, and my spine had healed, but I still felt awful. And I felt guilty. How had I become this lazy, unmotivated person who spends all her time in bed? A year later, I have my life back. I work two jobs, plus freelance work. I cook dinner for Boyfriend and me several nights a week, do all the grocery shopping, and keep the house clean. I walk my dog and ride my bike. I go shopping and to the movies with friends, drive long distances, and even occasionally babysit. Before, I only had the energy to do one or two of these things per day. I was a spoonie with a very low spoon limit. If I cleaned the house, that was it for the day. If I went to the store, I probably wouldn’t have the energy to cook the food I’d bought. If I taught a 3 hour class, I would come home and sleep the rest of the day. All of this I tried to conceal from my family and friends. I tried to be fine because there was no explanation for why I wasn’t.
Spoon chasing. (Image via unfocusedcreativity.blogspot.com)
Looking at how much better I am now makes me realize how sick I was. Yesterday, I had a two-hour morning conference call, after which I worked on the computer for another hour. Then I ate lunch and went to the grocery store. When I got back, I cleaned out the fridge, put the groceries away, and then did a thorough de-clutter and clean of the entire house. I read a chapter in my book, took a shower, and went out to dinner with Boyfriend. All that activity would never have fit into one day when I was sick. I was up again this morning at 8:00, feeling rested.
Weather-style pain scale. (Image via fibroofoz.blogspot.com)
3. My pain level. I was on strong prescription painkillers for a year and a half, starting in June 2010 after my surgery. Clearly, I didn’t get off them when I was supposed to, 6-9 months post-surgery. That’s because I didn’t just have back pain. It was in my hips, neck, and shoulders, too. The pain didn’t completely go away right after treatment. It’s been a slow progression. In the fall, I was able to wean myself off painkillers and just use heating pads when my back or joints bothered me. We know from the research that reactive arthritis may simply be part of the package for some patients with treated Borrelia infections. This is my framework for understanding some of my continuing aches and pains. For me, low-impact exercise, comfortable shoes, heating pads, and a memory foam mattress pad help a great deal. Whereas before my daily pain level rarely dropped below a four, even with drugs, now I’m at a one or a two most days, and I’m drug-free, aside from very rarely taking Advil.
What brain fog does to reading a book. (Image via a-b-martin.blogspot.com)
4. My cognitive level. The ability to think, speak, and write clearly is essential to my livelihood. Having a Borrelia infection plunged me into what many people describe as a “brain fog.” For more than a year, I was sort of drifting through life, not able to think very clearly about anything. It came on gradually, and after my surgery, it got worse, which I attributed to the pain and the painkillers. Now I’ve met enough fellow patients that I see the pattern. I understand how this infection clouded my cognition. One of the reasons I didn’t start writing this blog while I was getting treated was that I couldn’t focus well enough. Even post-treatment, it took me a few months to start feeling sharp again. I really noticed the change this past semester when teaching got easier. I was able to learn the names of all my students within the first three weeks–which hadn’t happened the previous four semesters. My focus and mental endurance were so much better, as was my time management during class. I felt sort of like I’d woken up from a long sleep. The time in my life when I was very sick seems blurry. Now, not only do I have the energy to do more, but I have much better concentration. I can even go back and look at things I wrote two years ago and see the difference in sentence structure. All I can say is it’s good to be “back.”
What I’m doing to stay well, one year out:
(Image via Wikipedia. Credit: Ren West)
1. Eating my eggs. You wouldn’t believe how “off” I feel if I go a day without an egg. That’s probably because my neurologically-damaged body likes choline, and eggs are full of it. I also find myself craving green vegetables. In fact, whenever friends ask me where I want to eat, I usually say, “Anywhere with good veggies.” I know there are many diets out there that are designed to help people with Borrelia infections avoid inflammation and other problems, and many of those recommend avoiding meat, dairy, gluten, and sugar. Personally, I’m not really cut out for that. I’m not the kind of person who can say, “I’m not going to eat X” when X is something that I really like, like sourdough bread, or milk, or chocolate. That’s not to knock the vegetarian, dairy-free, gluten-free, and/or sugar-free diets. I recognize that they do work for some people. However, I’m pretty sure that my body needs both meat and sugar to function normally, so I’ve always been opposed to giving up those. Other than being lactose-intolerant, I have no problems with dairy, and I don’t have more pain when I drink my Lactaid milk than on days when I don’t, so I’m not so concerned with the inflammation factor there. I seem to tolerate gluten pretty well, but I do try to limit my grains, as they’re not the best source of choline. No one gets between me and my egg sandwiches, though.
2. Staying active. I spent a large percentage of a year in bed, and going back there is very tempting at times, especially since during that time I developed a large collection of movies and TV shows, and my bed is VERY comfortable. Because I used to do most things from bed, I’m just now getting used to LIVING in my living room, WORKING in the office, and SLEEPING in my bedroom. (In fact, I’m breaking this rule now, typing the first draft of this from bed, but it’s a Saturday, and I’ve been working all week, so I don’t feel bad.) For me, staying active means not only “working out” (by walking the dog, riding my bike, and playing Dance Central on Xbox) but “getting stuff done.” I used to put off doing things and tell myself, “I’ll do it when I’m not so tired, or when I’m in less pain.” Now I don’t have those excuses, and it’s much less burdensome to get things done right away. Procrastination used to be a form of self-preservation. Now it’s a habit I have to work to break.
3. Preventing re-infection. After what I’ve been through, the last thing I want is another tick-borne infection, so I make sure that both my dog and I stay out of high risk areas for ticks. When we walk, we stay on the sidewalk. Boyfriend and I keep the yard clean–which is not too difficult since our backyard is mostly concrete. We treat Lucy monthly for fleas and ticks, and I’m always spraying that Cedarcide. I’ve decided not to do any hiking or camping for a while. When I want to enjoy the outdoors, I ride my bike or go to the beach.
4. Staying current on my tests. I get my blood drawn every 3 months so my doctor can check my antibody titer. My doctor said if I have a four-fold rise, then we’ll need to consider re-treatment. So far, I’ve been okay, but I want to be vigilant. I don’t want to get re-infected and not know about it.
Hope everyone is having a wonderful weekend!
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A fellow patient shares her story 05/30/2012
Posted by thetickthatbitme in Diagnosis, Patient Stories, Treatment.Tags: Borrelia, Borrelia hermsii, Ceftriaxone, Ertapenem, health, IV, Lyme Disease, medicine, misdiagnosis, Support group, tick bite, treatment
2 comments
When I started this blog, one of my goals was to somehow extend the community and knowledge base of my support group to other patients out there in the ether. Up to now, I’ve been doing this by sharing research, either that was introduced to me by my doctor or members of the group or that I stumbled upon on my own, and by sharing my personal journey. A few weeks ago, a third way of accomplishing this goal occurred to me: to let the voices of other patients from the support group speak through this blog. Today’s post is my first attempt at that. Leigh is a member of my Borrelia hermsii patient support group who has generously agreed to share her hermsii story. If you have questions for her, feel free to leave them in the comments.
Leigh’s Story
Gray whale. (Image via Wikipedia)
I moved to a beautiful coastal area and once I discovered that I could watch grey whales migrating south from the shoreline, I would hike out, sometimes, twice a day to see them. I never saw the bug that bit me, but I had what I thought was a mosquito bite that developed a red ring around it about a week later.
A couple of days after the bite, I left for China where I spent much of the trip sick, which I attributed to the trip. I caught a cold with a fever, but then got somewhat better. Two days before we left for home, I had terrible stomach problems. The Chinese airports have fever detectors you have to walk through before you can board any plane. I loaded up on Advil, Tylenol and Pepto Bismol to get home. Still, all of my symptoms seemed explainable; travel, food poisoning, jet lag.
It was now week three and I at least knew that a rash around a bug bite wasn’t a good thing, but when I made an appointment with my dermatologist he wasn’t available for another three weeks. I didn’t know I needed to drop everything and run to any doctor, so I waited. I kept getting alternately sick and better. By the time I saw him I was having terrible headaches. I was also losing concentration and feeling a bit “foggy.” The dermatologist immediately thought it was Lyme disease because of the red ring, and prescribed a very low dose of antibiotic. On the way to pick up the antibiotic, I drove off the road, hit a tree and wrecked my car.
After a little research, I found a local Lyme specialist who prescribed three antibiotics, Zithromax, Ceftin and Flagyl, each twice a day. After two months of this, it wasn’t working. I had stomach problems. I was very weak, tired, I had terrible headaches and my neck hurt so bad I couldn’t hold my head up very long. I couldn’t drive. I would sit at my computer unable to use programs I had been proficient at. I would repeat myself in conversations. I would make phone calls at odd hours, unaware of the time. I couldn’t do simple math problems. I couldn’t bear loud noises or bright light. I lost my sense of balance. I was rarely up or awake. I thought I was dying. I was neglecting my son and my husband, who insisted I look for another doctor. I made appointments with four different doctors. Luckily, the first was a neurologist who insisted I make an appointment with a specific infectious disease specialist in our area.
My appointment wasn’t for a week, but I realized I wouldn’t make it through the next week and he saw me the next morning. He was so off the wall and quirky that I had a friend of mine, who is a doctor, make sure he was a legitimate doctor! He told me that if he could make me laugh, he could make me better. He retested me and though my initial tests had shown a slight positive for Lyme, this test showed a strong positive to Borrelia hermsii, which explained the weak cross reaction for Lyme, another Borrelia. All of the literature says Borrelia hermsii doesn’t exist at low altitudes, but I know what I know, and I was at sea level when I was bitten. I asked the doctor what made him even guess Borrelia hermsii? He said it wasn’t rocket science; Borrelia hermsii is more prevalent in the west, and Lyme in the east.
The doctor prescribed a treatment that I had read showed promise, intravenous Ceftriaxone for six weeks. At this time, I was introduced to another “Lyme” sufferer who tried to talk me out of seeing this doctor and wanted me to see her Lyme specialist. We decided to compare notes in six weeks to see who was doing better. At the end of my treatment, there was no comparison between us. I was much better and she soon became his patient. She also had Borrelia hermsii, not Lyme.
I continued to be tested; my results have not gone down to a negative reading and may not ever. It showed up again 6 months after the first treatment in the form of a four-fold rise in my titer, but at least I caught it before I had raging symptoms again. I was retreated with Ceftriaxone followed by Ertapenem.
It’s now been almost a year since the second treatment and I have my life back. I feel focused. I’m working and doing things with my family. I’m planning a trip to Alaska with them this summer. I think the neck damage will always be with me, but even it’s better and at least manageable. I am eternally grateful to the miraculous chain of events that led me to this doctor and this treatment.
I was fortunate that I discovered a doctor who believes in Lyme disease and other tick borne infections. There are many doctors out there, along with uncooperative insurance companies, who doubt that Lyme and Borrelia infections even exist. Because of this there are many Borrelia infections that we currently don’t have tests for. I have encountered some skepticism in the medical field especially as I seek treatment for the physical damage that was caused by the infection. I believe that when you know something is wrong you have to be your own advocate. Only time will tell if I’m over this. At least I’ve quit running into trees!
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All IV therapy is the same, right? 05/09/2012
Posted by thetickthatbitme in Treatment, Whole Person.Tags: antibiotics, butterfly needle, health, infection, IV therapy, medicine, PICC line, treatment
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As you might have noticed, I am quite the internet researcher these days. I’ve been googling around, reading about different people’s experiences with IV therapy, and I have to say, some of the things I’ve seen are downright horrifying to me. To make sense of it all, I started researching the different ways that people can be hooked up to IVs and thinking about this in the context of my own experiences being poked with needles. I admit, I couldn’t figure it all out by myself, so yesterday, I requested an interview with Dr. W and he explained some of the nuances of IV practices to me. The following is my layman’s term translation of what I found out.
There are four main ways to do IV antibiotic therapy, and some methods are more popular than others. I’ll describe a little about each one, and then we’ll compare.
Catheters
Here’s my hand with a catheter in it following spine surgery in 2010. I think they took it out shortly after this because it was getting kind of gross.
One method of IV therapy is to insert a catheter into a vein in the hand or arm. The catheter can then be connected to a bag containing the prepared antibiotic. (If you’ve ever had general anesthesia, you’re probably familiar with this one.) Catheters can be left in up to three days, but after that, they need to be removed to avoid infection. When a catheter is taken out, another one cannot be put back right away in the same place, as this can damage the vein. One problem this poses is that a doctor treating a patient with IV therapy for an extended period of time may run out of places to put the catheter. Having a catheter can also inhibit a patient’s normal activities (like bathing, for example).
PICC line/Intravascular device
A PICC line (PICC stands for peripherally inserted central catheter) is inserted into the cephalic vein in the arm, which runs up into the subclavian vein. This line can be left in the vein for weeks at a time, so it is often used for long-term antibiotic treatment because it is more convenient (for the doctor) than inserting a catheter every 3 days. On the downside, having a PICC line inserted can cost thousands of dollars and may or may not be covered by insurance. The dressing needs to be changed weekly by a nurse, which is another added expense. If any complications arise, this may mean time spent in the hospital emergency room.
This is what a PICC line in someone’s arm looks like. The line has a bandage/dressing over it to keep it clean. Usually, you have to wear a sleeve over it to protect it and keep it from catching on stuff. (Image via ucdmc.ucdavis.edu)
One patient I know who was getting treated with vancomycin through a PICC line (for a non-tick-borne infection; vancomycin can only be done through a PICC line because of the nature of the drug) developed a severe allergic reaction to the adhesive that was used to tape the line. It looked like she had burns on her arm! Other people develop serious infections. How common is infection with PICC lines? In a study of 200 patients being treated with antibiotic therapy via PICC line, 15 patients had complications related to the PICC line itself, and six suspected line infections were reported. Now, I don’t know about you, but I wouldn’t want to be one of those six people, especially if I were paying thousands of dollars out-of-pocket for this treatment. So why do doctors who treat TBIDs like to use PICC lines? A PICC line usually means that a patient only needs to be seen by the doctor every week or so, so it is certainly less work for the doctor. In between doctor visits, a nurse is supposed to assist the patient with administering the medication. I’ve seen a lot of patient testimonials online, however, that indicate that in between doctor visits, patients are basically left to their own devices. I shudder to think of what happens to these patients if they have adverse reactions to the antibiotics or if they contaminate their lines while administering their own treatments.
Implantable Portacath
This method is not very common with IV antibiotic treatment, but it does exist, so I am mentioning it. A portacath is surgically inserted under the skin into the subclavian vein (which is a big vein) in the upper chest or the arm. The port has a silicone bubble called a septum, where the needle is inserted to administer the drug. The risk of infection with a portacath is purportedly lower than with a PICC line or catheter. The downside would be having to undergo the surgery to implant the port, as well as the surgery to remove it. Though it’s considered a minor surgery, I’m sure it’s not cheap, especially if it’s not deemed medically necessary by your insurance company.
Daily (Butterfly) Needle Insertion
This is the method with which I am most familiar, as it is how I was treated for 42 days. My doctor used a 23 gauge butterfly needle (which is an itty-bitty needle originally designed to be used in babies’ heads) and inserted it into a vein on the back of my hand. The needle was connected by a line to a bag containing the antibiotic, which was prepared fresh daily in a sterile hood. I sat in a comfy chair in the doctor’s office for about 45 minutes each day with the itty-bitty needle in my hand.
This, in my humble opinion, is the best (read: least painful) kind of needle. (Image via Wikipedia)
This method has several advantages. First, I didn’t have to worry about purchasing and storing the drug or any equipment. Everything was provided at my doctor’s office and included in the cost of my visit. I also didn’t have to worry about ‘doing it wrong’ because the doctor did all the work. All I had to do was keep my hand relatively still for 45 minutes. Aside from this time spent in the clinic, this drug delivery method didn’t inhibit my activities because I wasn’t walking around with a needle stuck in my vein. I could shower normally. I could go to the swimming pool. I could wear long-sleeved shirts and jewelry. I also didn’t get a scar like I did from the catheter in my hand after my back surgery. For comparison’s sake, I was curious about the risk of infection with the needle-in-hand method, so I asked Dr. W about it yesterday. He said that in the past year at his clinic, he has inserted more than 4,000 needles for IV infusions, and there have been zero infections.
Can you tell which hand got stuck 40 days in a row?
Okay, so let’s recap the pros and cons of each method.
|
Method |
Pros |
Cons |
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Catheter |
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PICC line |
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Portacath |
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Butterfly needle |
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5 Things That Helped Me Heal 05/02/2012
Posted by thetickthatbitme in Humor, Whole Person.Tags: Arthritis Foundation, Craig Ferguson, exercise, Geoff Peterson, healing, health, Heating pad, humor, Memory foam, treatment
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1. Shower chair
We got this after I had my back surgery (to help me avoid bending, slipping, and falling), and I continued to use it after I was diagnosed with hermsii and Anaplasmosis. It really makes a difference being able to sit and relax while bathing. My boyfriend (who is healthy as a horse) also enjoys using it when he just wants to wash his feet!
My chair. Note: It only works if you put it IN the shower.
2. Thermalon heating pads
One of my four heating pads.
These heating pads are my best friends. My mom, who has Arthritis, introduced me to them. I put mine in the microwave for about a minute, and it will stay warm for about 30, depending on how cold my house is. After the initial heating, you can reheat them for 30-40 seconds at a time. I prefer these to an electric heating pad because they provide moist heat, and I can fall asleep with one without burning myself. They helped me get off painkillers and sleep better on cold nights. They can also double as cold packs if you store them in the freezer inside a ziplock bag. I found them on sale at Walgreens for $15 each.
3. Low-impact exercise
Image via Arthritis.org
Taking an Arthritis Foundation water aerobics class at a warm water therapy pool helped me stay active while I was getting treated. The warm water helped my joints feel better, and I think all the endorphins from exercising made me happier. I also made some great friends in the class who are just slightly older and much wiser than me. (Shout out to the pool ladies!) If you’re interested in this type of class, you can search for one in your area here.
4. Memory foam mattress pad
This was also a purchase made after my back surgery. My mattress is quite firm. (That’s how I used to like it when I was a young thing with no health problems.) I’ve always slept best on my side, but after surgery, and as I began developing more joint problems in my neck, hips, and knees, the mattress was too hard for me. Rather than shelling out $800 for a new mattress, I spent about $150 for this memory foam mattress topper from Costco. Now the bed is soft enough that I don’t feel like I’m sleeping on a plank, but not so soft that I sink in too far. I’m still able to roll over during the night so I don’t get too stiff.
5. Geoff Peterson
I can’t stress enough how much laughter helped me recover. My parents are a little obsessed with Craig Ferguson, and I started watching him, too, when I was staying with them and getting IV therapy. Craig’s exchanges with his robot sidekick Geoff Peterson make me laugh the hardest.
What are some things that have helped your healing process?
Eight things you need to know about Anaplasmosis 04/25/2012
Posted by thetickthatbitme in Diagnosis, TBI Facts.Tags: Anaplasma phagocytophilum, Anaplasmosis, Borrelia burgdorferi, doxycycline, health, labs, Lyme Disease, medicine, Rocky Mountain Spotted Fever, tick, treatment
5 comments
A new fact sheet is up today for Anaplasmosis, otherwise known as Anaplasma phagocytophilum infection. Try saying that three times fast. This is one of the two TBIDs I’ve been unlucky enough to have, but I had never heard of it before my lab results came back with a positive antibody test for it. By the end of this post, you’ll know eight things you didn’t know before about Anaplasmosis.
A microcolony of A. phagocytophylum visible in a granulocyte (white blood cell) on a peripheral blood smear. Image via CDC.gov.
1. Anaplasmosis is spread by the same ticks that spread Borrelia burgdorferi (Lyme Disease). This means that people with Lyme can have a coinfection with Anaplasmosis (and some of them don’t know it).
2. The symptoms of an Anaplasma phagocytophilum infection are: fever, headache, muscle pain, malaise, chills, nausea / abdominal pain, cough, and confusion. Some people get all the symptoms; other people only get a few.
3. If you show symptoms of Anaplasmosis, your doctor shouldn’t wait for lab results to come back to begin treating you. The CDC recommends beginning treatment right away.
4. If you’ve been infected with Anaplasma phagocytophilum and you get tested within the first 7-10 days you are sick, the test might come back negative. This doesn’t mean you don’t have Anaplasmosis, and you’ll need to be tested again later.
5. The best way to treat Anaplasmosis is with the antibiotic Doxycycline. According to the CDC, other antibiotics should not be substituted because they increase the risk of fatality. If your doctor insists on treating your Anaplasmosis with something other than Doxycycline, it’s probably time to get a new doctor. For people with severe allergies to Doxycycline or for women who are pregnant, the drug Rifampin can be used to treat Anaplasmosis.
6. Anaplasmosis can be confused with other TBIDs in the rickettsia family like Rocky Mountain Spotted Fever (RMSF) and ehrlichiosis. These infections are also commonly treated with Doxycycline.
Image via CDC.gov.
7. The number of cases of Anaplasmosis reported to the CDC has increased steadily since 1996. You can attribute this to climate change or not, but the trend suggests that this disease will be an increasingly more common problem in the future.
8. More than half of Anaplasmosis cases are reported in the spring and summer months. This is a no-brainer, since this is when tick populations thrive. To avoid infection, take steps to avoid tick exposure for both you and your pets.
Image via CDC.gov.
What Is Prophylaxis, and Does It Work on Tick Bites? 04/24/2012
Posted by thetickthatbitme in Peer-Reviewed, Tick-Lit, Treatment.Tags: Borrelia burgdorferi, Borrelia hermsii, Borrelia persica, CDC, doxycycline, health, Israel, Lyme Disease, medicine, NEJM, prevention, prophylaxis, research, TBRF, tick bite, treatment
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This is NOT what I mean when I say “Tick-Lit.” Image via Wikipedia.
Today is Tuesday, and I’ve made an executive decision that from now on, every Tuesday I will be covering peer-reviewed research related to tick-borne infections. We in academia call this a “review of the literature,” even though it’s not what normal people think of as literature–no Shakespeare, just dry prose littered with scientific jargon–which is why most people don’t want to read it. Lucky for you, I am a super-nerd and enjoy this kind of reading, at least when it’s about TBIDs (tick-borne infectious diseases). I’ve even come up with an affectionate name for it: “tick-lit”. So every Tuesday from here on out will be Tick-Lit Tuesday, the day on which I read the literature so you don’t have to. Enjoy!
Today’s question: Does prophylaxis work for tick bites?
While a lot of patients with tick-borne infections don’t remember a tick or a tick bite (which is why it takes so long to get diagnosed), there are also people who do notice being bitten and go to a doctor right away because they are concerned about TBIDs. So what happens to these patients?
I’ve heard stories from patients with TBIDs, particularly patients with Borrelia burgdorferi (Lyme) and Borrelia hermsii (Tick-borne Relapsing Fever), about how when they went to a doctor within 48 hours of being bitten, they were told “Oh, we don’t have Lyme in this state, so you don’t have to worry.” Following this logic, ticks carrying Borrelia burgdorferi must be so smart that 1) they know which bacteria they are carrying; 2) they know which state they are in; and 3) they have the decency to respect state lines. I can really imagine a deer tick saying, “Oh, no, I can’t go over there. I’m a California tick. They don’t let dirty ticks like me out of California.” I suppose some doctors imagine that there is some kind of tick parole system that keeps them from traveling anywhere where the CDC and state health departments have not documented them to exist.
Some of these delusional doctors probably can’t be reasoned with, but what about doctors who want to do the right thing? What should they do when a patient comes to them within 48 hours of a tick bite?
Let’s take a look at the research.
One of my favorite tick-lit studies is one that was published in the New England Journal of Medicine way back in July 2006. The study took place in Israel, where Ornithodoros tholozani ticks infect people with a bacterium called Borrelia persica. Borrelia persica, like Borrelia hermsii, causes Tick Borne Relapsing Fever (TBRF). You can think of Borrelia persica as B. hermsii‘s brother. The researchers wanted to find out whether prophylaxing soldiers (giving them antibiotics right away) who had recently been bitten by ticks would prevent the infection from spreading and causing the symptoms of TBRF.
Here’s how they did it (Methods). They studied 93 healthy soldiers with suspected tick bites. Some of these people had evidence of a tick bite (like a rash) and others didn’t, but had been in the same places that the people with bites had, so they had the same risk of exposure. They randomly picked half of the soldiers who would receive antibiotics (Doxycycline for 5 days), and the other half would receive a placebo (which means they would think that they were taking antibiotics, but they were really taking a sugar pill). The study was double-blind, which means that neither the soldiers nor the researchers knew which patients were given the real antibiotics at the time of the study. This makes the study more credible.
Here’s what happened (Results):
All 10 cases of TBRF identified by a positive blood smear were in the placebo group of subjects with signs of a tick bite (P<0.001). These findings suggested a 100 percent efficacy of preemptive treatment (95 percent confidence interval, 46 to 100 percent). PCR for the borrelia glpQ gene was negative at baseline for all subjects and subsequently positive in all subjects with fever and a positive blood smear. Seroconversion was detected in eight of nine cases of TBRF. PCR and serum samples were negative for all of the other subjects tested. No major treatment-associated adverse effects were identified.
In English, this means that 10 of the 46 people who did not get treated with antibiotics got sick with TBRF, and their blood tests showed that they were making antibodies to Borrelia persica. (Their PCR test (a DNA test) was also positive for the borrelia gene.) However, none of the 47 people who were treated with antibiotics developed any symptoms of TBRF. When their blood was tested, it was negative for antibodies to Borrelia persica and their PCR was negative for the borrelia gene. That means that prophylaxing with Doxycycline prevented 100% of cases of TBRF (Borrelia perica infection).
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- Doxycycline Structure. Image via Wikipedia.
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- Doxycycline 3D structure. Image via Wikipedia.
Now you may say to yourself, “Oh, that’s only one study. The sample size was fairly small, and it’s not necessarily generalizable to all Borrelia infections.” At least, that’s what I imagined you (or your skeptical primary doctor) saying as I was rooting around on PubMed. Then I dug up this study from *gasp* 2001: “Prophylaxis with single-dose doxycycline for the prevention of Lyme disease after an Ixodes scapularis tick bite” (!!!)
The 2001 study was conducted in an area of New York with a high incidence of Borrelia burgdorferi (Lyme) infection. Like the Israeli study, it was also a randomized, double-blind, placebo-controlled trial, but unlike the Israeli study, they only gave patients a single dose of doxycycline. The results? One out of the 235 people treated with doxycycline got Erythema migrans, the bull’s-eye rash that indicates a Borrelia burgdorferi infection. In the placebo group (people who didn’t get antibiotics) 8 out of 235 developed the rash and tested positive for infection. Their conclusion: a single dose of doxycycline can prevent Lyme if given within 72 hours of the tick bite.
If these two studies are not convincing or current enough, the doctors from the Israeli Medical Corps published another study in 2010. First, they inform us that “Since 2004, the Israel Defence Forces (IDF) has mandated the prophylaxis of tick-bitten subjects with a five-day doxycycline course.” (That has me thinking the Israelis are pretty smart.) Just to make sure they were doing the right thing, in this study, they decided to analyze all the tick bite and TBRF cases in their records from 2004-2007.
Here’s what they say:
Of those screened, 128 (15.7%) had tick-bite and were intended for prophylaxis, of which four TBRF cases occurred-3.13% attack rate compared with an expected rate of 38.4% in these bitten individuals without prophylaxis (RR = 0.08, number needed to treat = 3). In all cases in which screening and prophylaxis were provided within 48 h of tick bite, complete prevention of TBRF was achieved. No cases of Jarisch-Herxheimer reaction (JHR) was recorded.
What does that mean? Only 4 of the 128 people who were treated with doxycycline developed TBRF, a rate of 3.13%. The expected attack rate was more than 10 times that, 38 percent, so without the doxycycline policy, it would likely have been 48 people with TBRF instead of 4. One more thing. There was a reason those four people got sick: they were given the doxycycline later than 48 hours after being bitten!
The Big Picture
How does this research affect you as a patient who has been bitten by a tick and contracted an infection or as a patient who could potentially be bitten by a tick in the future?
The research shows us that, if treated within 48 hours with 5 days of Doxycycline, most–if not all–cases of Borrelia infection and resulting symptoms can be prevented. If you could get an appointment with an infectious disease specialist who recognizes this fact within 48 hours of being bitten, you could probably avoid a lot of potential suffering. The problem is that to see a specialist, you usually need to be referred by your primary care doctor. Some of us can’t even get an appointment to see our primary care doctors within 48 hours, and some of the primary care doctors don’t even know how to spell Borrelia (no offense to primary care doctors who can spell it), let alone diagnose it with a simple blood test. And most of them certainly don’t know that the best thing to do would be to prophylax you with doxycycline.
Let’s put the numbers in perspective. In 2010, the CDC reported over 20,000 confirmed cases of Lyme (Borrelia burgdorferi) and an additional 10,000 probable cases. The CDC’s number of cases (which I believe, as with burgdorferi, are severely underreported) for 1990-2011 for Borrelia hermsii (TBRF) is 483. If 35% of those Borrelia cases had been prevented with prophylaxis, that would mean 10,669 fewer sick people.
So what can you do? Here’s a list of my suggestions:
- If you’ve been diagnosed with a tick-borne illness, make sure that every one of your doctors knows it, even the ones you don’t like and the ones you don’t go to very often. All doctors, not just infectious disease doctors, need to be aware of how prevalent these infections are.
- If you are bitten by a tick, insist that your primary care doctor prophylax you with doxycycline for five days. You can even print out these PubMed article abstracts and bring them to your appointment. Many doctors can be reasoned with, and if they won’t listen to you, sometimes they’ll listen to the New England Journal of Medicine.
- If you are bitten by a tick, try your best to save the little beast. You can store it in an old prescription bottle or a jar. (Labs like Quest Diagnostics also distribute collection containers to some doctors’ offices.) Inform your doctor that you are brining the tick to your appointment and you want to have it tested. Having ticks tested helps with more accurate CDC reporting about which areas have infected ticks.
- Getting the tick tested doesn’t mean that you don’t need to get tested. The tick testing takes longer than the people testing. On the off-chance that prophylaxis doesn’t work for you, you’ll need to get more treatment if you test positive.
- As always, the best way not to get a tick bite is not to be in areas where ticks live and not to be around animals that carry ticks. Follow tick-exposure prevention best practices. This includes keeping your home and yard free of mice and rats (on which the hermsii-carrying ticks feed) as well as deer (on which the burgdorferi-carying ticks feed).
That’s all for Tick-Lit Tuesday. Stay informed and stay well!
Curious about Tick-borne Infections? 04/21/2012
Posted by thetickthatbitme in TBI Facts.Tags: Borrelia burgdorferi, Borrelia hermsii, diagnosis, facts, infection, Lyme, Lyme Disease, TBI, tick-borne, treatment, ugly stepsister
2 comments
Happy Saturday, loyal readers!
I thought I’d point out that I’ve added a new section to the blog: Infection Fact Sheets. One of my goals with this blog is to give you, my readers, access to as much factual information about tick-borne infectious diseases–or TBIDs, as I like to abbreviate them–as possible.
Since you’ve stumbled upon this blog, I’m sure you’ve heard of Lyme Disease, but do you know the name of the bacterium that causes it? Are you familiar with the common and not-so-common symptoms? What about the different drugs that are used to treat this infection? Check out the fact sheet here.
And let’s not forget Borrelia hermsii, which I consider to be like Lyme’s neglected ugly stepsister. Nope, no press for Ms. B. hermsii… Take pity on her (or if not her, me, a hermsii survivor) and pay a visit to her fact sheet.
Poor Borrelia hermsii… No one talks about her.
If I were truly going to put my teacher hat on and plan a lesson for you, I’d tell you to make a K-W-L chart and take notes!
Once you’re done with the Borrelia sisters, you’ll probably be hungering (or worrying?) for more TBID info. Here’s a list of what’s to come: Anaplasmosis, Babesiosis (WA-1), Ehrlichiosis, Rickettsia (Rocky Mountain Spotted Fever), and more!
THE TICK THAT BIT ME 