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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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Ehrlichia: confusing cousins, the blood supply, and the new kid on the block 05/04/2012

Posted by thetickthatbitme in Diagnosis, TBI Facts.
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Ehrlichia…I just met a girl named Ehrlichia…and suddenly the sound…

Nope. Doesn’t quite work.

Paul Ehrlich

Paul Ehrlich (1854-1915). Image via Wikipedia.

Ehrlichia is actually named after German microbiologist Paul Ehrlich (1854-1915), who won the Nobel Prize in 1908. Here are some things you actually need to know about Ehrlichia:

1. Ehrlichia is transmitted through the bites of lonestar ticks and deer ticks. If you’ve had another infection carried by these ticks (like Lyme Disease), your doctor should have had you tested for Ehrlichia (or maybe you’ll be asking him/her to test you after reading this post?).

2. Symptoms of Ehrlichiosis include: fever, headache, chills, malaise, muscle pain, nausea / vomiting / diarrhea, confusion, conjunctival injection (red eyes), and rash (in up to 60% of children, less than 30% of adults). When it goes untreated (or improperly treated), complications can include breathing problems, bleeding disorders, and death (1.8% of cases).

3. Ehrlichia is effectively treated with doxycycline in both adults and children. The CDC recommends a 7-14 day course.

4. Your doctor shouldn’t wait for your test results to come back before prescribing you doxycycline. If your doctor thinks you might have Ehrlichiosis, he/she might order a PCR, a blood smear, or an IFA (antibody test). These tests can take a few weeks to come back, and in that time, you could get very, very sick. In addition, a negative result on any of these three tests does not rule out the possibility of infection. Often, in the first 7-10 days you are infected, you will test negative. For more information about these tests, take a look at the Ehrlichiosis fact sheet.

5. Ehrlichia can be easily misdiagnosed as one of two other infections. It’s a rickettisial disease, which means it’s in the same family with A. phagocytophilum and Rocky Mountain Spotted Fever (RMSF). Sometimes the rash patients get with Ehrlichia looks a lot like the rash patients get with RMSF.

6. It may be possible to contract an Ehrlichia infection through a blood transfusion. The CDC has not been very vocal about it, but it’s on their website. Fun fact: “Ehrlichia chaffeensis has been shown to survive for more than a week in refrigerated blood.” If you’ve had an Ehrlichia infection, it’s probably not a good idea for you to be a blood or organ donor.

7. There’s a newly identified species of Ehrlichia in Wisconsin and Minnesota. It doesn’t have a fancy species name yet, so scientists refer to it as Ehrlichia Wisconsin HM543746 or Ehrlichia muris-like (EML). This one is carried by deer ticks. If you live in one of these states and your doctor is not so hip to the new infectious disease research, he or she may have told you that you didn’t need to be tested for Ehrlichia because “we don’t have that here.” (I hate it when doctors say that!)Hopefully there will be a commercially-available, species-specific test for this soon. For now, my guess is that physicians in Wisconsin and Minnesota who suspect Ehrlichia infection are ordering tests for E. chaffeensis and E. ewingii.

Got an Ehrlichia story you’d like to share? Shoot me an e-mail.

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.

What Is Prophylaxis, and Does It Work on Tick Bites? 04/24/2012

Posted by thetickthatbitme in Peer-Reviewed, Tick-Lit, 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).

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:

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
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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!

“Persistent Infection With Lyme Disease” Dr Phil – YouTube 04/20/2012

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If you missed the April 13 episode of Dr. Phil on which Lyme Disease was discussed, you can watch it on YouTube.

“Persistent Infection With Lyme Disease” Dr Phil – YouTube.

Here are my reactions:

9:24 When she says she is positive for 4 strains of Lyme, I assume that she means that 4 bands (out of 10) on her western blot were reactive (positive). The word “strain” is misleading because it makes it sound like she has 4 different infections. Lyme Disease is caused by one species of bacteria named Borrelia burgdorferi. There are, however, other bacteria in the Borrelia genus that cause Lyme-like symptoms–B. hermsii being one of them.

9:41 She has a PICC line, which is more convenient for the doctor because she doesn’t have to stick her with a needle every day, but the risk of secondary infection is much higher than getting a new IV in the hand everyday.

9:45 Five IVs a DAY?!?! WHY?

9:52 Why is she being treated with IV Zithromax and not Ceftriaxone? (Zithromax/azithromycin is what you take orally when you have Strep throat.) I guess this explains the 5 IVs per day. Maybe if they used the right drug, she could cut back to one IV per day.

10:16 That freaks me out that she’s speeding up her own drip. Only the doctor is supposed to do that! (If the drip goes too fast, you can have a nasty adverse reaction.)

11:57 I wonder which tests she got, and in what order.

14:30 Here’s Dr. Auwaerter’s CV, if you’re curious. Scroll down to the publications.

15:08 You can read the text of the monkey study Dr. Bhakta alludes to here. BTW, Dr. Bhakta’s residencies were in Respiratory Therapy and Anesthesiology. She is not board certified in California. To read more about board certification, go here.

What were your thoughts on this episode? Drop me a comment.

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