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Stuff I’ve been tested for and WHY 05/08/2012

Posted by thetickthatbitme in Diagnosis, TBI Facts, Whole Person.
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I apologize for the inconsistent posting lately; it’s been a busy couple weeks. No tick-lit today, so I’ll owe you some later in the week!

Tonight’s question: How did my doctor find 3 crazy infections that five other doctors missed? (One of which went undiagnosed for 7 years!)

medical records

This is the small binder I carry with me to doctor’s appointments. I have about half a file drawer dedicated to the rest.

Answer: He sent me to get tested for a whole lot of stuff.

How did he know what to order? He considered my risk factors and exposure to disease vectors (like ticks and pets). Is it important for your doctor to know if you’ve been out of the country? If you used to live in another state? If you have pets? If you hike or camp? If you’ve had food poisoning? Yes, yes, yes, yes, and yes!

Below, rather than listing the name of each disease/infection I was tested for, I’ve listed the names of the tests as they appear in my lab reports from Quest Diagnostics. (No, Quest did not pay me to mention their name. I just happen to like them, since they’re always nice to me and their tests helped find my infections.) They’re sorted according to why my doctor thought to order them.

Quest sends me pretty labs in color (as if that matters). Tip: always check the box on your lab slip that says “mail patient a copy” or something like that.

DISCLAIMER: Just because I’ve been tested for something doesn’t mean that you need to be. Only you and your doctor can decide what you should be tested for based on your history, risk factors, and symptoms.

Tick exposure

Borrelia hermsii AB IFA

Anaplasma phagocytophilum IFA

Ehrlichia chaffeensis IFA

Lyme Disease Antibody (IgG/IgM) Western Blot

WA1 (Babesia duncani) IgG Antibody, IFA

Babesia microti Antibody IgG/IgM

Cat exposure

Bartonella Species Antibody test w/reflex (FYI: One of my cats has tested positive for Bartonella, but I was negative. He’s never scratched or bitten me, but I have been bitten by a different cat.)

Toxoplasma IgG Antibody

Toxocara Antibody, ELISA (serum)

Having food poisoning in Mexico and China

Entamoeba histolytica IgG, ELISA

Giardia lamblia AB Panel, IFA

Helicobacter pylori IgG

Helicobacter pylori breath test

Salmonella and Shigella Culture (this was not fun, but I’m glad they were negative)

Camphylobacter Culture

Additional tests:

Immunoblobulins G, A, and M (to see if I was deficient, as this would affect the results of antibody tests and would mean I might need additional treatment, like IVIG—luckily I was not deficient)

CBC (to see if I was low on any particular kinds of blood cells, which might indicate an infection)

Questions? Feel free to comment/e-mail. For whatever reason, I seem to enjoy discussing labs.

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My Friend (Frenemy?) Anti-panty: Healing Humor 04/28/2012

Posted by thetickthatbitme in Humor, Whole Person.
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During my 42 days “doing time” in the infusion clinic, I became acquainted with three women from the same family—a young woman, her mother, and her grandmother—who were all being treated by Dr. W for various conditions. I’ll call them the Kind family, because they are amazingly kind and generous people. Grandma Kind lived on the east coast, and would be seen periodically by Dr. W when she visited her daughter and granddaughter. She’d had some lab work done, and the results came into Dr. W’s office by fax at the very end of a workday.

Credit: Louise Docker

Seeing that the elder Mrs. Kind had tested positive for an infection, Dr. W thought it wise to telephone her right away so that she could make arrangements to get treated for it. It was nearly 7:00 p.m. pacific time, 10:00 p.m. eastern time, when he called Mrs. Kind to inform her of the lab results. He hadn’t considered the time difference until she answered the phone with a groggy “hello.” He apologized for disturbing her at such a late hour, but went ahead and quickly explained that she had an Anaplasma phagocytophilum infection, and asked that she call his office within the next few days to arrange for treatment.

The next morning, Dr. W received a distressed phone call, not from the elder Mrs. Kind, but from her daughter.

“Dr. W, my mother said you called last night, and I’m a little worried about her diagnosis. I tried to Google it, but I can’t find any information on Anti-panty-poo-poo.”

Dr. W thought his hearing aid must have malfunctioned and said, “Excuse me?” to which Mrs. Kind replied, “My mother says you said she has Anti-panty-poo-poo. What exactly is that?”

Anyone who hears this story can’t help thereafter referring to Anaplasma phagocytophilum as anti-panty-poo-poo.

Eight things you need to know about Anaplasmosis 04/25/2012

Posted by thetickthatbitme in Diagnosis, TBI Facts.
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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.

annual Anaplasmosis cases

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.

Anaplasmosis by month

Image via CDC.gov.

My Story 04/18/2012

Posted by thetickthatbitme in Diagnosis, meta-blog, Treatment.
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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.

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