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My Story

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.

The treatment for Entamoeba histolytica was a course of Metronidazole, an oral antibiotic and the treatment for Anaplasma phagocytophilum was 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.

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Comments»

1. Ann W. - 04/20/2012

A very moving story, excellently written. Brought tears to my eyes.

2. Cara Olsen - 04/23/2012

I have never heard of such a phenomena happening to a human, nor its ability to cause such trauma to the body. Your story moved me. Thank you for sharing with honesty, vulnerability, and a hope that inspires me to reach upward, strive forward, and never give up.

Blessings,
Cara

thetickthatbitme - 04/23/2012

Cara, thanks for reading and for your thoughtful comment! Your passion for the clean water cause and your work with Crafting Water is inspiring to me! You are too modest about your crafting abilities–the crafts look beautiful. (And your Annabella is adorable. What breed is she?)

I look forward to reading more about the great things you are doing.

-Em

Cara Olsen - 04/23/2012

Such kind words, thank you! Crafting Water is near and dear to me; however, as it has yet to “take off”, I am hopeful that my Creator is pleased with my obedience, rather than any veritable success. 🙂 I love to make things, and will continue to do so when time allows.

Oh, my baby . . . She is 100% Chihuahua as far as I know. We rescued her from a shelter, so there is no way to tell for sure. Her coloring is quite unique, so I wonder if perhaps she is of another breed, too, but I don’t know.

Thank you SO very much for your support, and for coming by to see what I am upto! Lovely to meet you!

Blessings,
Cara

3. Gimpwalker - 04/23/2012

Wow, I am indeed impressed! I too live in a high Lyme infection area and worry about this stuff constantly. And good for you for being proactive in your health care!

thetickthatbitme - 04/23/2012

Thank you! I share your love of walking and admire your determination to stick with it 🙂

4. Allison C. - 04/26/2012

Hi Em, my name is Allison and I am one of Dr. W’s patients in CA. I suffer from Borrelia Hermsii and a number of other co-infections. I, like you, never knew when I got bit – so at 19 I started having horrible debilitating symptoms, much like the ones you described. Now, at age 24, I’m finally feeling semi-“normal” thanks to Dr. W 🙂
Your blog gives me hope and also gives me a sense of community and understanding. Thank you for sharing your story!
~ Allison

5. thetickthatbitme - 04/27/2012

Thanks for reading, Allison! I hope your health continues to improve!

6. Dorothy - 04/29/2012

E. very impressive. I knew you were good, but this written word is excellent. was hoping to see you soon, so happy you are feeling and doing so much better. keep up the good work. D

thetickthatbitme - 04/29/2012

Thanks for reading, Dorothy!

7. Beth - 05/02/2012

Thanks very much for your eloquent history and informative Tick 411. I just began ceftriaxone IV infusion therapy (with Dr. W). This is my second go-round after a first attempt of 10 weeks of inadequate dosage improperly administered by another doctor and 8.5 months of various oral antibiotics prior to that). I am very hopeful that this will do it, and I, too have found that laughter and exercise have saved me. Three cheers for Dr. W and his awesome staff . . . I wonder every day what gift I could give them to show my appreciation – any ideas? ciao!

thetickthatbitme - 05/02/2012

Beth, thanks for reading and commenting! I hope your ceftriaxone therapy is going well 🙂 Gifts for Dr. W and the staff… Dr. W enjoys any gift that facilitates foolishness–rubber chickens, funny hats, etc. I’m sure you’re probably familiar with his sense of humor by now. His wife loves it when patients bring him fresh fruits and/or vegetables. I think the staff enjoy edible gifts as well.

8. umoc193 - 05/04/2012

WordPress advised me that you had liked one of my posts so I ventured here to see what’s up.

What a personal ordeal you’ve had. I hadn’t previously realized how serious tick bites can be.

The wife of a good friend of mine contracted Lyme disease a few years ago and still suffers some effects though he overall experience in no way matched yours.

I’ve been fortunate with my own health issues in that treatments and procedures are pretty standard and I’ve never had complications or long paths to relief like yours.

9. Ashley Everhart - 05/16/2012

WOW what a blessing you only needed 6 weeks of therapy– that is a record- I know not a single person who has done less that 6months! Awesome!

thetickthatbitme - 05/16/2012

Ashley, most of the people I know have been treated successfully with one or two six-week courses of Ceftriaxone therapy. I think the key is getting effective treatment with antibiotics that are prepared fresh daily so they don’t lose their potency. (It’s also important to be treated with the right drug and not Zithromax or something.) I also got to see my doctor every day for those six weeks so he could closely monitor my condition. A lot of patients being treated for Borrelia infections don’t get that kind of attention from their doctors.

10. Ashley Everhart - 05/16/2012

I see your point, but I have had it 20 years. I just got diagnosed. I am on that Ceftriaxone. The leading LLMD’s will say 3m for every year you have had it… my doctor is one of the best. I do 2x daily 4days a week. Of the hundreds of chronic lymies I know the average time is 2 years. Most get better stop treatment and symptoms come back… so its a constant fight to kill them. Which is recorded by ILADS. But like i said awesome for you!!! I will share your story its hope.

thetickthatbitme - 05/17/2012

So you’ve never tried 2 g ceftriaxone daily for six weeks straight?

11. Ashley Everhart - 05/17/2012

I do 2g — in the morning then at night…. so 4g daily….but 4/3 — maybe you had lyme for a short time. Dr. Burrascano: “In general, early LB is treated for four to six weeks, and ate LB usually requires a minimum of four to six months of continuous treatment. All patients respond differently and therapy must be individualized. It is not uncommon for a patient who has been ill for many years
to require open ended treatment regimens; indeed, some patients will require ongoing maintenance therapy for years to remain well.” The 3 days off is due to the strain it puts on the system… can wreck havoc. Also,the die off…. most get very very bad herxing so you don’t want to kill too fast… dangerous….spirochetes are very smart so you have to pulse…. you kill…. they come out of the cyst…. you kill again…. eventually you add a cyst buster… like Flagyl or an herb like GSE. They will be in cyst form for a long time and lay dormant…. so to have long standing success you have to tackle them in all forms— these are Dr. Burrascano’s guidelines. He is the leader of the Lyme community of doctors- and leader of ILADS. But sure you know all of this:) anyway just trying to explain where my treatment comes from.

I would love to know who your doctor is? So your ABX are made same day you use them>? Mine are made and shipped in ice box to my house, then kept refrigerated. Only 2wk of life.

thetickthatbitme - 05/17/2012

The whole 4 days on, 3 days off thing is a bit puzzling to me. At 4 grams per day, I can see how this would be very traumatic to your system. I’d be very interested to read published research on this method if you can point me to any. Are you a patient of Dr. Burrascano?

Yes, when I was being treated my doctor made up the ceftriaxone every day in a sterile hood about 30 minutes prior to my infusion. My doctor’s name is David Wright. You can read about his practice here: http://davidcwrightmd.com

Just so you know, ceftriaxone has a maximum of 10 days of life (not 14) when refrigerated. Have you seen my post from yesterday? I discuss at length the manufacturer recommendations for treatment with ceftriaxone.

12. Ashley Everhart - 05/17/2012

Also we would love to have you at tiredoflyme.com and there is a social network like facebook of all us Chronic Lymie’s…. we swap stories of encouragement and treatment tips….

thetickthatbitme - 05/17/2012

Thanks so much for the invite! (And thanks for stopping by and reading my site.) I am always looking for ways to connect with people who have been affected by tick-borne illness. Please let me know how I can participate on tiredoflyme.com. I see that there are a number of wonderful blogs featured there.

13. muddledmom - 05/18/2012

It’s stories like yours that help moms like me make the decisions I did. My son had a suspect rash and bite but no tick. I read that ticks can sometimes fall off. The rash looked a lot like a bull’s-eye. Even though there weren’t other symptoms, it could have been early. I really wasn’t sure what to do, but decided I better not waste any time and took him to the doctor just to make sure. My son just had a rash. I just overreacted. But being educated helps us know we don’t want to take chances. So thanks for getting your story out there. You educate and you are helping. Good luck to you.

thetickthatbitme - 05/18/2012

Thanks so much for stopping by! I don’t have kids, but as a teacher and auntie to a few little ones, I’m beginning to understand that good parents seem to be able to find some sort of happy medium between paranoia (which some believe results from knowing too much) and blissful ignorance. I really admire the parents who are able to negotiate that line between cautious and obsessive, especially because I predict that I’m going to be one of those obsessive parents!

14. Jen Hansen - 06/07/2012

Thank you for sharing ALL of your information and life story with all of us. After speaking with Dr. Wright today on the phone for over an hour….he is in California and I am in Utah, I realized that I am NOT alone in this horrible journey to find peace ,hope and health again. Your story sounds like so much like my story. I am sure you get told this often. I am grateful to have talked to Dr. Wright today and that he pointed me in the correct direction for rec treatment and finding this wonderful wealth of info. that you have provided. Best wishes to you for a happy -healthy future !!!

thetickthatbitme - 06/09/2012

Jen, thanks for stopping by, and I’m glad you could connect with my story (though I’m sorry to hear you’ve been through something similar). I hope your treatment goes as smoothly as possible!

15. Wendy Thomas - 06/26/2012

Thank you for stopping by This is what chronic lyme looks like. I have 3 children (of my 6) who are being treated for Lyme. 2 have responded well to treatment, the remaining child is in a critical situation due in part to us going to 11 different docs over 6 years before we finally figured out it was Lyme.

There is so much to learn about these tick-borne illnesses.

thetickthatbitme - 06/26/2012

Hi Wendy! Thanks for commenting. I find your posts on This is what chronic Lyme looks like to be very moving. What a great idea to use photos in this way to tell the story of your family’s battle with Lyme. I hope your kids get the treatment they need to get well. Out of curiosity, have any of them tried IV infusion therapy with Ceftriaxone/Rocephin? I wholly agree with you that there is much to learn about these illnesses–and it seems that most the of the doctors out there (pediatricians especially) really don’t know enough to treat patients successfully.

16. TheAfterburnSG - 07/10/2012

Wow…how deeply moving your story is. It is a shame that tick bite infections continue to go undiagnosed for years and years causing much suffering in the ‘victim’. Thumbs up to you for being an advocate through your blog.

thetickthatbitme - 07/10/2012

Yes, I’d say one of the worst things about these infections is that they’re missed by a lot of doctors, even though blood tests are widely available. Thanks for visiting 🙂 I love your blog!

17. Arlene Somerton Smith - 07/11/2012

You are doing a good thing.

thetickthatbitme - 07/12/2012

Thanks, Arlene! I hope Sasha the wonder dog feels better soon 🙂

18. lauraslymerecovery - 07/11/2012

Thanks for sharing your story. It’s always heartening to find someone else with an experience similar to mine. I’m so glad to hear that you are recovering. I often wonder why some improve and others do not. Both the illness and the path to recovery seem to be so individualized.
Your site is well written and informative. Keep up the good work!
– Laura
http://lauraslymerecovery.wordpress.com/

thetickthatbitme - 07/12/2012

Laura, thanks for visiting. Yes, I’m doing pretty well almost a year post-treatment. Borrelia are certainly tricky, and there’s much research still to be done about how best to treat these infections. It would be nice if “the experts” could get along and pool their resources. It’s clear that every patient is different, but I can’t help but think that many doctors just aren’t doing enough–otherwise, more of us would be getting well. Hope your health continues to improve!

19. birds..deer..and deep throat..a follow up « lilly the cat - 07/25/2012

[…] my-story […]

20. Cauldrons and Cupcakes - 02/26/2013

Hi Em,
I was so sad to read such a familiar story, but also heartened that I treatment has helped you. I’m looking forward to exploring your site. Much love from Australia, Nicole 😀 xx

thetickthatbitme - 02/27/2013

Hey Nicole,
Thanks for stopping by! I agree it’s depressing to see so many of us on the web who have been affected by tick-borne illness, but I’m grateful that I’m in good company. I’ve been exploring your site as well–so colorful and positive! And those adorable pups! Your Harry reminds me of my Lucy.
Take care!
Em

21. lymeathome - 03/06/2013

Hi! Thanks for stopping by my site. Its always great to find another person who understands this disease. Nobody really understands the complexity until they live through it. Great site!

thetickthatbitme - 03/06/2013

Thank you!

22. Dana - 08/11/2013

Thanks for your clever, informational and easy to read site. I am 24hours out of the hospital after being diagnosed and treated for TBRF with Borrelia hermsii. Reported cases in our state are very rare. I am fortunate to have access to an urban hospital with very a proficient ID staff who caught on and treated me very quickly. I “sweated out” my first fever episode at home, thinking it just was the flu, but the unrelenting headache, joint aches, nausea and chills eventually sent me to the ED three days later. I appreciate your light at the end of the tunnel!


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