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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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Well, Babs, you’re trickier than I thought 05/01/2012

Posted by thetickthatbitme in Diagnosis, Peer-Reviewed, TBI Facts, Tick-Lit.
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Welcome to the second installment of Tick-Lit Tuesday, where I comb through PubMed so you don’t have to. Today’s topic: Babesia and Blood Transfusions. Now, I know I posted about Babesia in the blood supply just a few days ago, but an interesting study has since come to my attention (thanks, Dr. W), and the implications are a bit scary. Okay, get your popcorn and let’s begin.

The Issue:

blood donation

A blood donation pictogram. Image via Wikipedia.

It has been well-documented that the tick-borne protozoan parasite Babesia can be contracted through blood transfusions. Blood centers aren’t required to test donated blood for Babesia, but this may change in the future, as Babesia infections contracted through transfusions are on the rise. So if we were to test all donors for Babesia prior to donation, which tests should we rely on to detect this pesky parasite? Let’s look at the candidates.

IFA: IFA is an abbreviation for indirect fluorescent antibody test. This type of test can also be referred to as serologic (as in blood serum) testing. If you’ve had one of these tests for Babesia, it’s probably titled something like “WA1 IGG ANTIBODY IFA” (for B. duncani) or “BABESIA MICROTI ABS IGG/IGM” on your lab results. If you’ve had Babesia in the past and been treated for it, your antibody test might still read positive because your body is still making antibodies to the parasite. This is one of the reasons why most insurance companies refuse to pay for treatment for Babesia if your only positive test is the IFA. They think maybe you had a past infection that you got over, so you don’t need treatment. (The other reason they refuse to pay is that they’re jerks, to put it nicely.) I’ll talk more about why this is such a problem later in this post.

Babesia microti smear

A stained blood smear on which B. microti parasites are visible in red blood cells. (CDC Photo: DPDx). Via CDC.gov.

Smear: When we talk about a smear for Babesia, we mean a Giemsa-stained thin blood smear. This test involves looking at blood samples under a microscope to see if there are any parasites hanging around. The problem with this test is that Babesia can infect fewer than 1% of your circulating red blood cells, so it could take many, many smears before any Babesia show up under the microscope. For more information about that phenomenon, read this.

PCR: This stands for polymerase chain reaction. It’s basically a DNA test that tries to identify whether a gene associated with Babesia is present in the blood. PCR has been found to be “as sensitive and specific” as blood smears for Babesia (see this study), which is not saying much, considering the tendency of Babesia to go undetected with smears.

Hmmm, for whom shall I cast my ballot, the antibody test insurance companies don’t trust, the inaccurate smear, or the inaccurate PCR? Choices, choices…

Today’s question:

Can the donated blood of someone with a negative PCR and negative blood smear still be infected with Babesia and cause Babesia infection in transfusion recipients?

(Hint: This is a leading question.)

Let’s talk about a study published in the journal Transfusion in December of 2011 called “The third described case of transfusion-transmitted Babesia duncani.”

Here’s what happened:

In May 2008, a 59 year-old California resident (I’ll call him Cal) with sickle-cell disease had some red blood cell transfusions. Cal’s only risk factor for Babesia was the transfusions; he didn’t have any tick exposure. In September of 2008, Cal was diagnosed with a Babesia duncani (WA-1) infection. The parasites were visible on a blood smear, the indirect fluorescent antibody (IFA) test was positive, and the PCR was positive for the Babesia gene. This launched a transfusion investigation in which doctors tracked down 34 of the 38 blood donors whose blood could have infected Cal with Babesia. One donor, a 67-year-old California resident (who I’ll call Don) had a B. duncani titer of 1:4096 (on the IFA test). What does a titer of 1:4096 mean? Well, if the antibody test for B. duncani is negative, the titer will be < 1:256. That means that Don’s antibody test was positive.

What the article abstract doesn’t tell you, which the full article does, is that both Don’s PCR and blood smear were negative for Babesia. How did the researchers prove definitively that Don had Babesia in his blood? They injected the blood into Mongolian gerbils, and were later able to isolate the parasite from the gerbils. Conclusion: Even though Don showed no symptoms of Babesia and both his PCR and smear were negative, his donated blood caused Babesiosis in both Cal and the gerbils.

Here’s why the study’s findings are important:

1. Clearly, blood smears and PCRs are not good indicators of whether someone is infected with Babesia. Why insurance companies think these tests need to be positive before they’ll pay for treatment is a mystery to me. There are probably a lot of people out there who’ve had positive IFAs but negative smear and/or PCR who were then not treated for Babesia because either the doctor, the insurance company, or both said they didn’t have an infection.

2. As far as the blood donation goes, if we don’t start screening out donors with positive Babesia IFAs, we’re going to continue to contaminate the blood supply with Babesia. It should be as simple as that. Been bitten by a tick? No blood donation for you. Positive IFA? No blood donation for you.

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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.

The Proactive Patient Manifesto 04/20/2012

Posted by thetickthatbitme in Whole Person.
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I don’t know about you, but sometimes going to the doctor makes me feel sicker! Why is that? Maybe it’s because I often feel that I have no control over my patient experience. Over the years, I have developed strategies for being proactive about my medical care that assist my doctors in understanding my needs and concerns AND give me more control and peace of mind. So here is my *proactive patient manifesto* of sorts.

As a proactive patient, I vow to…

Keep organized medical records. At most doctors’ offices, you can request copies of all your records, including office visit notes, procedure/surgery notes, labs, and imaging. When you get labs, always request that the lab mail a copy of the results to you (in addition to forwarding them to your doctor). When you get imaging, you can often get your own copy on CD. I keep all of my records in a three-ring binder and use tabs to sort them into categories like infectious disease labs, general labs, gastroenterology, urology, neurology, ophthalmology, etc. I also typed up a one-page medical history summary that lists my past surgeries, medications, and diagnosed conditions, which I keep at the front of the binder. I bring this binder to every doctor visit so that 1) if my doctor needs to copy my records, he/she can do so easily; 2) doctors and their staff know that I mean business and I pay attention; and 3) I can hold my doctors accountable for explaining my current condition in the context of my medical history. For example, I may have lab work ordered by one doctor that is related to a condition for which I am seeing a different specialist.

Communicate as openly and directly with my doctor as I possibly can. This means honestly disclosing symptoms and describing concerns. This means that when my doctor says something I don’t understand, I must ask him/her to repeat it. This means keeping each specialist informed of what’s going on with all my other specialists (the medical history summary really helps with this).

Come to the doctor prepared with a (written) list of questions and concerns. This is essential to me because 99% of the doctors I’ve been to always try to rush me out of the appointment after the first 5 to 10 minutes. Have you ever noticed how when doctors ask us, Do you have any questions? our instinct is always to say no? A discourse analysis professor I had in grad school had studied this phenomenon in doctor visits and found that the use of the word “any” deterred patients from asking questions! He suggested that doctors instead ask, Do you have some questions? because this seemed to elicit a more positive response from patients. My doctors have always used any, but it’s much easier for me to respond, “Yes, I have some questions,” if I have a list of them right in front of me.

Report incidents of mistreatment by my doctor or his or her staff. If your doctor is part of a large practice or a hospital group, there is usually a Patient Experience or Risk Management department or person whom you can contact to report inappropriate treatment. I recommend writing down a detailed account of what happened as soon as you can. Often, these experiences can be so distressing that we forget the order or the particulars of what happened, and that can compromise our credibility when we go to report the incident. When you speak with Patient Experience, try to communicate what outcome you are hoping for, whether it’s waiving the fee for your appointment or a simple apology. If you are mistreated in a doctor’s office, I don’t recommend making a scene or threatening to sue. Doctors take being sued very seriously, and if you sue one doctor in the town (or county, or state) you live in, you may have difficulty finding another doctor to treat you.

Stay informed about research related to my health conditions. This means reading articles, asking doctors to recommend written resources, participating in patient support groups, and—of course—writing this blog.

Am I missing anything? What strategies do you have for staying proactive?

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