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Arthralgias, myalgias, and herx—oh my! (Symptom vocabulary for TBIDs) 05/22/2012

Posted by thetickthatbitme in TBI Facts, Tick-Lit, Treatment.
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lions tigers bears oh my

Oh no, not a Borrelia infection!

This is part one in a multi-part series on vocabulary related to tick-borne infectious diseases (TBIDs). Today, we focus on symptoms. You can find all these terms and more on the Glossary page.

arthralgia: a fancy medical term for joint pain. The origin is Greek (arthro- = joint; -algos = pain). Arthralgias may be a symptom of injury, infection, illness, or an allergic reaction. They are a common symptom with TBIDs like Borrelia burgdorferi (Lyme Disease), Borrelia hermsii (TBRF), and Babesia.

myalgia: a fancy medical term for muscle aches. Myalgias can be a symptom of infection with Borrelia burgdorferi (Lyme Disease), Borrelia hermsii (TBRF), Babesia, Ehrlichia, Anaplasma phagocytophilum, Rocky Mountain Spotted Fever, Toxoplasmosis, Malaria, or Influenza. They can also be a symptom of inflammatory diseases like Multiple Sclerosis.

Bell’s palsy: This is a paralysis of the muscles in the face caused by damage to the seventh cranial nerve. It is often unilateral (only on one side), and it’s more commonly seen in patients with Borrelia burgdorferi. As you may know, one of the consequences of Borrelia infection is inflammation, and this inflammation can lead to loss of nerve function. You can read more about Bell’s palsy here. Patients with Borrelia infections may also have damage to the eighth cranial nerve (also known as the auditory vestibular nerve), which can result in tinnitus (ringing of the ears) and problems with balance.

pulse oximeter

A pulse oximeter measures pulse and oxygen. Image via Yale Medical Group.

postural tachycardia: Tachycardia is a heart rate that exceeds the normal range (usually indicated by a pulse greater than 100). Some people with infections have tachycardia all the time, but many only have postural tachycardia, which is tachycardia when you stand up for 3 minutes after lying down for 3 minutes. According to my doctor, this has been a great predictor of whether a patient has an infection, and he puts every new patient though the “tilt test”: lie down three minutes, have your vitals taken, stand up 3 minutes, have your vitals taken. Often, the difference in lying and standing pulse will decrease over the course of treatment.

herx: Herx is short for Herxheimer reaction (or Jarisch-Herxheimer reaction). It was named after dermatologists Adolf Jarisch and Karl Herxheimer in the late nineteenth century, who discovered it while treating Syphilis patients with mercury. (Fun fact: Herxheimer was a colleague of Paul Ehrlich, for whom Ehrlichia is named. They both helped found the University of Frankfurt. Not-so-fun fact: Herxheimer was murdered in 1942 by Nazis at Theresienstadt; he was 81.) A Herxheimer reaction can occur when one is being treated for an infection with antibiotics. It’s thought to be caused by the endotoxins that are released as bacteria start to die off. Herx are characterized by fever, chills, rigor (shaking), hypotension, headache, tachycardia, hyperventilation, vasodilation with flushing, myalgia (muscle pain), and exacerbation of skin lesions.

I’ve discovered a bit of an inconsistency when it comes to information available online and in published research about herx. Almost every Lyme patient blog I’ve ever read mentions herxing. I was herxing bad today, etc. Many patient and doctor organizations related to the treatment of Lyme Disease also discuss herxing. They characterize herxing as common among patients with Borrelia infections and as a sign that antibiotics are working. Herx seems to be used liberally as a term that means any sort of increased discomfort that a patient feels while undergoing antibiotic treatment.

For the sake of comparison, let me tell you how a medical textbook describes the Herxheimer reaction. I’m using as my reference Principles and Practices of Infectious Diseases, seventh edition (borrowed, not bought). I’ll start with the Herxheimer reaction as studied in patients with Borrelia hermsii (TBRF) infections. A herx in hermsii patients is characterized by severe rigors, increase in temperature, and decrease in blood pressure. The onset of reaction occurs within 2 hours of initial therapy and coincides with clearing of spirochetes from the blood. This means that in order to have the reaction you have to have spirochetes in the blood (which would be indicated by a positive blood smear). You’ll also notice that the reaction happens on the first day of treatment.

According to Principles and Practices, herx occur in 30-40% of patients with Borrelia hermsii infections. When a herx does occur, medical attention is necessary because there is a possibility of fatality. Aspirin is sometimes given to lower the fever. A saline infusion can be given to increase blood pressure. If the reaction is very severe, the patient may have to be given steroids. In sum, if you have an acute Borrelia hermsii infection and are treated with antibiotics, there is a chance that you will have a herx reaction the first day of treatment. If you are having a true herx, you will probably need immediate medical attention.

Now, you may remember that I had Borrelia hermsii, and upon reading the above information, I was really curious as to why I never experienced one of these reactions. When I asked my doctor about it, he explained that it was because I had a latent infection. In other words, I did not receive treatment until several years after I was infected. My body had already tried to fight off the bacteria, and had partially succeeded because my infection was no longer acute. This meant I did not have a high load of bacteria in my blood. So even though some days my joint and muscle pain worsened and I felt sick to my stomach, because I didn’t have the shaking, the fever, and the low blood pressure and because the bacteria was hiding in my joints, not in my blood, I never had a herx reaction. Dr. W went on to say that he has treated more than 50 people with B. hermsii infections, and he has never seen a herx in clinic. He has, however, seen some fever-chill reactions when patients with hermsii were being treated with Ceftriaxone. “And those weren’t herx?” I asked. He didn’t believe so; rather, he thought that the fever and chills were because Ceftriaxone wasn’t killing the bacteria quickly enough. When he switched those patients to Ertapenem, a stronger antibiotic, the fever and chills went away, and the patients saw improvement in their conditions.

Now here’s what Principles and Practices has to say about herx in patients with Borrelia burgdorferi (Lyme Disease). The reaction occurs during the first 24 hours of therapy, and consists of high fever, a redder rash, and greater pain. Some vasodilatation may also occur. The Herxheimer reaction occurred in approximately 15% of patients. Only 15 percent! That was shocking to read. There were also no reported deaths from Herxheimer reactions during antibiotic therapy for Lyme Disease.

Clearly, the rate of herx reactions in studies did not match my impression from anecdotal accounts from patients, so I asked Dr. W if he could offer any explanation. His hypothesis was that since most B. burgdorferi (Lyme) patients have latent (long-term) infections and not acute (new) infections, they are probably not having true herx reactions. However, since some doctors prescribe a lot of different supplements to be taken while patients are undergoing antibiotic therapy, perhaps some of the symptoms that patients feel are adverse reactions to the supplements. Because supplements are not subject to the same FDA regulation as pharmaceuticals, the companies that manufacture them are not required to prove their safety or effectiveness. Consequently, very little is known about how these products interact with prescription and over-the-counter medications. To read more about supplements and regulation, go here.

Here’s what I take away from all this:

  • Herxheimer reaction is a medical term used to describe a specific set of symptoms in a specific set of patients (those with acute Borrelia infections) which may be life threatening (in the case of very high fever and very low blood pressure), particularly in patients with Borrelia hermsii infections.
  • The term “herx” has been adopted by both the LLMD (Lyme-literate medical doctor) community and the Lyme patient community and has evolved into a generic, non-clinical term that means discomfort or worsening of symptoms that occurs multiple times throughout the course of antibiotic treatment.
  • Just because a patient is experiencing discomfort does not mean he or she is having a true Herxheimer reaction.
  • Contrary to what some doctors say, there is nothing worrisome about a patient who does not have a Herxheimer reaction, as they only occur in 30-40% of B. hermsii patients and 15% of B. burgdorferi patients.
  • Some episodes of high fever and chills during antibiotic therapy might mean that the antibiotic is NOT working well enough. Patients sometimes benefit by being switched from Ceftriaxone to Ertapenem.
  • Because some patients take a number of supplements in addition to antibiotic therapy and none of these are properly regulated by the FDA and studied in clinical trials, their effect on the body is unpredictable. It’s possible that some reactions that patients believe are Herxheimer reactions are actually reactions to other things they are taking.
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This week’s choline diet highlights 05/20/2012

Posted by thetickthatbitme in Uncategorized.
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I tried to be good and cook simple, choline-rich meals at home this week. Here are some highlights:

McBreakfast Sandwich

I love making my own version of a fast food breakfast sandwich for several reasons. One, it’s healthier because I can use better ingredients. Two, it’s relatively inexpensive. Three, I don’t have to drive anywhere to get it.

eggs and canadian bacon

Start with an egg and a slice of Canadian bacon.

Sometimes I use an English muffin or a bagel, but this week I didn’t have those, so I used sourdough, which I actually like better. I also subbed out boring old American cheese for some spicy pepperjack.

sourdough pepperjack

Pepperjack on toasted sourdough. They’re big slices, so I just used one and folded it in half.

To drink, I had Treetop orange-pinapple juice, which I water down.

orange pineapple juice

Choline count: fried egg (125 mg) + Canadian bacon (19 mg) + sourdough bread (15 mg) = 159 mg

breakfast sandwich juice

Rainbow Coleslaw

I grew up on traditional southern-style coleslaw, and when the weather gets hot, I start craving it. I love putting it on pulled-pork BBQ sandwiches. Being that eating cabbage covered in mayonaise (or in my case, Miracle Whip) is not the healthiest way to get one’s veggies, when I make coleslaw at home, I try to make it a little healthier (and more rich in choline). One of the ways to do this is to use broccoli slaw. You can make it yourself in a food processor, or if you’re lazy like me, you can buy it already shredded up in a bag.

rainbow slaw

In a small bowl, I mix the dressing, which consists of Miracle Whip, sweet pickle juice (I didn’t have any, so I skimmed some out of the pickle relish jar), and horseradish sauce (for a kick). Some people also like to add vinegar (in place of pickle juice) and dijon mustard.

condiments

The condiment lineup.

Then I dump the shredded veggies into a big bowl, add a diced tomato, and mix in the dressing. It’s best to refrigerate slaw for a few hours before eating, but I always sneak a few spoonfulls to make sure it tastes right.

Choline count: broccoli, cauliflower, carrot, cabbage, tomato

coleslaw

Ready to refrigerate.

California Sandwich

I’ve been eating a lot of sandwiches lately. Boyfriend brought back several loaves of bread from Eric Schat’s Bakery, including some delicious rye bread, so I used some of it to make this sandwich.

tomato avocado egg sandwich

I topped that slice of delicious rye bread with Miracle Whip, horseradish sauce, tomato slices, a fried egg, and half an avocado.

milk and sandwich

Choline count:  fried egg (125 mg) + tomato (12 mg) + 1/2 avocado (9 mg) + rye bread (5 mg) + milk (39 mg) = 190 mg

Chorizo Scramble

Toward the end of the week, I started feeling guilty about eating so much bread, so I cooked up some Mexican chorizo with eggs and topped it with diced avocado and tomato. Cooking for two, I use five eggs and one package (a long link) of chorizo.

chorizo eggs avocado tomato

Choline count: 2 eggs (250 mg) + chorizo (58 mg) + tomato (12 mg) + 1/2 avocado (9 mg) = 329 mg

Ceftriaxone (Rocephin): Is your doctor following directions? 05/16/2012

Posted by thetickthatbitme in Treatment.
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Have you ever stored a frying pan with a plastic handle in your oven and then forgotten it was in there the next time you turned the oven on? If you have, you probably can’t use that frying pan anymore because the handle is melted off. That’s a situation that demonstrates why it’s important to use products the way the manufacturer intended.

Think about how many over-the-counter medications you might have in your medicine cabinet. They all have different purposes, right? Some are for pain, others are for allergies, and others are for cough and cold. You bought each medication for a specific purpose, and it won’t work for other purposes. For example, you wouldn’t take Zyrtec if your back hurts, just like you wouldn’t take Ibuprofen in the hopes that you’ll stop sneezing when you go outside.

ibuprofen

Ibuprofen tablets. (Image via Wikimedia Commons. Credit: Ragesoss)

You also have to follow the correct dosing and timing specified by the manufacturer. If your back ache is going to last for the next 10 hours, and the instructions say you can take two pills every 4 hours, you can’t just take 4 pills now in order to save time. If you’re a daredevil, you’re probably thinking to yourself, “Oh, that’s no big deal. I won’t die,” and you’re right, you probably won’t die from taking 4 Ibuprofen when you’re only supposed to take two. But if you failed to follow the manufacturer’s instructions every time you took Ibuprofen, and you took it every day for months, you would probably be doing some serious damage to your body.

Now let’s think about a prescription antibiotic called Ceftriaxone (or Rocephin). Ceftriaxone is used for IV therapy to treat a variety of infections, including Borrelia burgdorferi (Lyme Disease) and Borrelia hermsii (Tick-borne Relapsing Fever). The drug comes in a powder form, and it has to be dissolved (“reconstituted” is the official term) in a sterile solution before it goes into your IV. By the time most patients see the drug, it has already been reconstituted in solution inside an IV bag by a doctor or pharmacist. This means the patients have never seen the vial that the drug came in, and they certainly haven’t seen the package insert and read the instructions.

So why should you care what’s in the package insert? Isn’t that for your doctor to worry about? Wouldn’t a doctor who has treated hundreds of Borrelia infections know the right way to prepare and use Ceftriaxone?

See if you can answer those questions when you’re finished reading this post.

Storage and Stability Issues with Ceftriaxone

Shelf life. Depending on how it is stored, Ceftriaxone in solution may have anywhere from zero to ten days of shelf-life. There are two main variables that influence the length of shelf-life: what the solution is made of and what container it’s stored in. As you can see from the table below, Ceftriaxone can be reconstituted in a variety of sterile solutions. What’s in the solution determines how it should be stored and for how long. For example, Ceftriaxone in a solution of Dextrose and Sodium Chloride cannot be refrigerated, and it only keeps for 2 days.

Containers. Take a look at the above excerpt from the Rocephin/Ceftriaxone package insert. The only two types of containers it references are glass and PVC. Why? Because those are the only two types of containers in which Roche, the manufacturer, has studied the drug. They don’t know what happens to Ceftriaxone in solution if you store it in a container made of any other material.

So the next question is: Are doctors and pharmacists only storing reconstituted Ceftriaxone in PVC and glass?

Answer: No.

My reaction: Whaaaa?

Okay, with the glass, I’m actually not surprised. I’ve seen a good number of YouTube videos featuring patients doing home infusions, and in none of them did I see any glass containers. But what about PVC? Oh wait, PVC! I know you! PVC is an acronym for polyvinyl chloride, a substance used to make all kinds of things from pipes to IV bags and tubes. The problem with PVC is that it contains phthalates, specifically one called Di-2-ethylhexyl phthalate (DEHP). Exposure to DEHP and other phthalates has been linked to all sorts of health problems, and it has been banned in the manufacture of toys in both the U.S. (2008) and the European Union (1999). More recently, Kaiser Permanente announced that it will no longer buy IV medical equipment made with PVC or DEHP, and other hospitals have followed suit. Maybe that’s because they read this study about how DEHP leached out of PVC bags containing lipid emulsions (a.k.a. liquid nutrition), or this study about how DEHP leeched into saline stored in PVC bags, or any of the other 50+ studies on TOXNET about PVC and infusions.

Dextrose 100 mL

The label from a B.Braun IV bag of Dextrose. Note the “Do not store.” (Image via dailymed.nlm.nih.gov)

Taking these developments into consideration, if you’re doing home infusions with Ceftriaxone, your doctor or pharmacist probably isn’t storing the reconstituted Ceftriaxone in PVC containers—and if s/he is, s/he shouldn’t be! Moreover, since we don’t know anything about the shelf-life of Ceftriaxone in any other types of containers (besides glass), it’s probably not a good idea to store it in non-PVC containers either. What about storing it in IV bags or syringes? I asked Dr. W about this, and he said that these containers are not intended for storage. IV bags even say, “Single use container. When introducing additives, do not store.” Again, there is NO DATA on how well this drug stores in syringes and non-PVC IV bags.

“So what about glass,” you say. “Should I just ask my doctor to put the reconstituted Ceftriaxone in a glass container?” Well, glass is a better choice than PVC or some other container, and some solutions, like Dextrose, are still available in glass bottles, but if those bottles get even one little crack, you’re S.O.L. Another concern is that even when stored correctly for the amount of time allotted by the manufacturer, Ceftriaxone can lose up to 10% of its potency, which means that if you are using drug that was made up yesterday or a week ago, some of the drug that’s going into your system is inactive. I’ve heard reports of stored Ceftriaxone turning yellow after a few days in the fridge. Dr. W explained that this is a very bad sign, because a color change means a chemical change has occurred. (Think about what happens when the bread sitting on your counter turns blue.) I don’t know what the effects of inactive drug going into your system are, but I think ideally, you want the drug to be 100% active, which means you want the drug to be freshly prepared daily, if possible. I know this is a tall order for both patients and doctors, but I think that doctors who really care about treating their patients effectively should consider this approach. Not only does it make the most sense, but it’s also the way the manufacturer intended for the drug to be administered. Read below.

ceftriaxone

Notice how they say that in order to “minimize drug waste,” that is, to keep the drug from going bad, it should be “mixed at bedside just prior to administration.” This means they want your doctor to fix it up right before you get your infusion. Note the use of “rare” in the next sentence. It should be RARE that the drug is not infused right after it’s prepared. Instead, most doctors seem to be making up drug a week in advance and telling patients to pop it in the fridge with last night’s leftover spaghetti. No, don’t eat that hamburger meat that’s been in the fridge for a week, but if you want to infuse that week-old Ceftriaxone solution, go right on ahead.

Drug Delivery Issues with Ceftriaxone

Janet Leigh Pscyho

Janet Leigh in Alfred Hitchcock’s Psycho. (Image via The Guardian. Credit: Allstar/Cinetext)

Here’s where my YouTube favorites list really started to play like a horror movie. (Cue Hitchcock music.) I saw all sorts of scary things in addition to the violation of the don’t-store-in-anything-but-glass rule. I saw a little girl hold her PICC line tube in her mouth while she flushed it with saline. (Yeah, Mom, it’s great that she could do it all by herself, but do you really think that’s be best way to keep the line clean?) I saw a young woman in Australia reconstitute her own Ceftriaxone on her living room coffee table. Most disturbing, I saw patients giving themselves Ceftriaxone through PICC lines using a technique called “IV push.” Why did this scare me? Allow me to explain.

An IV push is when a syringe containing reconstituted drug is hooked up to the PICC line and pushed through in just a few minutes. It’s a method that seems, to me, to be favored by lazy nurses who don’t have 30 minutes to wait around while a home care patient gets a drip. Aside from being a lazy method, is it a dangerous method to use with Ceftriaxone? Of course. Why do you think it scares me so much! To see why it’s dangerous, you have to understand the manufacturer’s instructions for appropriate concentrations of the drug and for the timing of drug delivery.

Concentration concerns. According to the package insert, 40 mg/mL is the maximum concentration allowed for Ceftriaxone. If you are infusing 2 grams Ceftriaxone, you need to dissolve it in at least 50 mL of solution (2 g = 2000 mg; 2000/40 = 50). Last time I checked, 50 mL of solution doesn’t fit in a little syringe. If you use less than 50 mL of solution, you can’t be sure that all of the drug (which is in powder form) dissolves, and that’s bad because you don’t want powder going into your vein. Even if you do manage to dissolve all of the drug in less than 50 mL of solution, there’s no guarantee that it will stay dissolved in that high concentration. Remember, syringes aren’t made for storage, and the drug company hasn’t studied the shelf-life of Ceftriaxone stored in syringes.

Timing concerns. Ceftriaxone is meant to be infused, not injected into your vein. That means it’s supposed to drip slowly. In our fast-paced society, I know it’s tempting to want to speed things up. Some of my fellow patients in the infusion clinic were always trying to speed up their IVs behind the doctor’s back so they could get out of there faster, and when they were caught, they were strongly admonished for two reasons. First, the drug is most effective when infused slowly. Second, infusing a drug too quickly can cause dangerous adverse reactions.

So imagine you’re doing a three-minute IV push through a PICC line. That means you’re putting the drug into your system ten times faster than it’s supposed to go in. What will happen is that you’ll have a very high concentration of the drug in your blood stream, and then you’ll have quick fall-off. This can result in high toxicity if the drug precipitates to your gallbladder or kidneys. The result is that you might experience a gallbladder attack or even kidney failure. What’s worse is that since you are pushing the drug through a PICC line and not through a little vein in your hand, you’re putting the drug into a vein that goes directly to your heart. If it hits your heart too quickly, you could give yourself an arrhythmia or bradycardia.

The bottom line: Any doctor or nurse who wants to give you an IV push with Ceftriaxone clearly hasn’t read and understood the manufacturer’s instructions in the package insert and should not be considered competent to treat you with IV therapy.

So what have we learned today?

  • Many doctors aren’t using Ceftriaxone (Rocephin) according to manufacturer instructions.
  • Ceftriaxone has no proven shelf-life when stored in anything besides PVC and glass.
  • PVC is dangerous and should not be used to store any drug you plan on putting in your body.
  • Glass storage containers can crack and leak.
  • Ceftriaxone MUST be dissolved in AT LEAST 50 mL of solution. Anything less is unstable and unsafe.
  • Ceftriaxone in solution must NOT be stored in IV bags and syringes.
  • Daily prepared Ceftriaxone is the only sure way to get stable and potent drug.
  • Ceftriaxone must be infused over at least 30 minutes in order to be safe and effective.
  • IV push is a dangerous method that poses serious risks to the patient, including complications affecting the gall bladder, kidneys, and heart.

Questions? Concerns? Crazy Ceftriaxone stories? I await your comments.

Eating out {in the name of choline} 05/13/2012

Posted by thetickthatbitme in Choline Diet, Whole Person.
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One of my dear friends is a new mommy who’s been going a little stir-crazy for the past two months waiting for her son to get his first shots and be allowed to leave the house more regularly. Yesterday, she got a few baby-free hours, which presented a perfect opportunity for some fine dining (or at least what we frugal ladies consider fine dining), and that’s how we found ourselves at a little place called Cafe Mundial in Monrovia.

Now, I must confess, I wasn’t thinking about my choline diet at all as I was scanning drooling over the menu, but it turned out that both my friend and I did fairly well on the choline count without really trying. Here’s what we had:

To Start

This restaurant serves their complimentary bread with a side of hummus (which is really not to be confused with humus). Much to my delight, when I looked up hummus today, I discovered it has 4 mg per tablespoon. (Side note: if you look up “humus,” which is how WordPress spellcheck thinks “hummus” should be spelled, you’ll find it has no choline. So if anyone ever commands you to “Eat dirt!” tell them, “I can’t. I’m on a choline diet.”) We also each ordered the soup du jour, which was tomato basil. (I have no picture of this, and couldn’t find one from Cafe Mundial.) Not much choline in the soup, but it was delicious!

cafe mundial hummus

Yummy hummus with bread for dipping. (Image via Yelp)

The Main Course

I had the duck conflit, which was accompanied by a small scoop of mashed potatoes and generous helpings of carrots and zucchini. You can see it pictured below with beans instead. Choline count for roast duck: 43 mg for half a pound. Cooked carrots and zucchini add 7 mg and 8.5 mg choline, respectively, for half a cup each.

Duck Conflit

Duck Conflit with veggies. (Image via Yelp)

The Finale

Though I admire the philosophy of “Life is short; eat dessert first,” this isn’t really possible with soufflé, owing to the long prep time. It was more like, “Life is short; order dessert first, or else it won’t be ready.” This one was accompanied by fresh strawberry slices and a vanilla bean sauce. We were a few bites into it when I said, “Hold on, I should take a picture of this.”  It was just as delicious as it looks. I couldn’t find any nutritional data for chocolate soufflé, but boring old grocery-store-bakery chocolate cake has about 20 mg per slice. With all the eggs and chocolate in soufflé, I’m guessing this little treat comes it at around 30 mg.

chocolate soufflé

Chocolate soufflé, a.k.a. Heaven.

So how well did I fare in the choline department? According to my (rough) estimate, I had about 100 mg of choline. My friend, who ordered the filet mignon (77 mg choline in 3 oz), out-cholined me by about 40 mg.

All IV therapy is the same, right? 05/09/2012

Posted by thetickthatbitme in Treatment, Whole Person.
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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

hand catheter

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.

PICC line

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.

Butterfly_needle

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.

hands

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

Catheter

  • Can do treatment at home with a nurse
  • Has to be changed every 3 days
  • Risk of infection
  • Leaves a scar

PICC line

  • Can do treatment at home with a nurse
  • Only have to see doctor weekly

 

  • Risk of infection
  • Risk of allergic reaction to bandage adhesive
  • Patient may have to self-administer
  • Leaves a scar
  • Expensive

Portacath

  • Can do treatment at home with a nurse
  • Has to be surgically implanted and removed
  • Expensive

Butterfly   needle

  • Doesn’t leave a scar
  • Lower risk of infection
  • No prep work for patient
  • Have to visit doctor every day
  • Have to get stuck with a needle every day

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.

Snacking in the name of choline 05/06/2012

Posted by thetickthatbitme in Choline Diet, Humor.
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Since I spend a lot of time working from home, it’s difficult to resist a lot of snacking. Now I believe that eating small meals throughout the day is healthy; however, when you factor in my mighty sweet tooth and the fact that my better half keeps visiting the Entemann’s bakery outlet on his way home from work (he can’t resist the deals), well…you see the predicament. So I decided this week that if I’m going to be ‘bad’ and indulge in a few fattening or sugary or salty snacks, I had better make sure I was getting my choline. Here are some of the choline-rich snacks that my research turned up.

Savory Choline Snacks

Peanut Butter (21 mg in 2 tbsp) and Carrots (6 mg in 1 large carrot)

This is an established favorite for both me and my dad. I used to feel guilty about putting peanut butter on something that is otherwise pretty healthy, but with about 10 mg of choline per tablespoon, I don’t feel that bad. I do, by the way, buy the reduced fat peanut butter. If you prefer almond butter, it has about 8 mg of choline per tablespoon.

carrot peanut butter

Carrot ♥ Jif in my kitchen.

Pistachios (20 mg in 1 oz)

I’m a girl who likes to play with her food, so these are one of my favorite snacks. Sometimes I like to eat them with a few chocolate chips and some dried cranberries. If you’re wondering how many dry roasted pistachios are in an ounce, it’s about 49.

pistachios

(Image via Wikimedia Commons)

Edamame (56 mg in 100 g—about 2/3 cup)

I usually order edamame (boiled soybean pods) as an appetizer when I go out for sushi with friends. Some grocery stores also have it in the freezer section.

(Image via Wikimedia Commons. Credit: habitatgirl)

Sweet Choline Snacks

Peanut Butter (21 mg in 2 tbsp) and Banana (11 mg)

Yes, you can see I have a propensity to put peanut butter on a lot of things. This is a third-generation snack in my family that originated with my grandma. I find a glass of chocolate milk goes well with it. (One cup of chocolate milk also adds 42 mg of choline!)

banana peanut butter

Banana and Jif hanging out on my counter. If Carrot finds out, you are sooo busted, Jif!

Baked Sweet Potato (23 mg for a large one)

Sweet potatoes are so underrated. I try to substitute them for boring old russet potatoes whenever I can, including when I make home-made french fries. The easiest (and laziest) way to prepare a sweet potato, though, it to stab it with a fork a few times and then pop it in the microwave. I like mine with a little butter and brown sugar, but season salt or garlic powder is also good.

sweet potato

(Image via Wikimedia Commons)

Ready for the finale? My most exciting discovery in my choline research is that chocolate is a great source of choline. (Which means, all those times when I was craving chocolate, it wasn’t just me, it was also my neurotransmitters.) I could list about 100 chocolatey snacks here, but I’m going to have some self-restraint and just do one.

Chocolate éclair (79 mg)

This one takes me way back to when I was too short to even see over a bakery counter. (Thanks, Mom, for getting me addicted to these at such a young age.) When I discovered this dessert, I considered changing my name to Claire, just so I could be “Chocolatey Claire.” Is an éclair the same as a doughnut? Of course not, silly! It’s far, far better. I recommend a tall glass of milk with this one.

chocolate eclairs

(Image via Wikimedia Commons. Credit: georgie_grd)

If you want to try making some éclairs from scratch, here’s a yummy recipe over at Moo’s Pantry.

That’s all I’ve got for today. What high-choline treats would you add to this list?

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.

5 Things That Helped Me Heal 05/02/2012

Posted by thetickthatbitme in Humor, Whole Person.
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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

heating pad

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

Arthritis Foundation

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?

Technorati 05/01/2012

Posted by thetickthatbitme in Uncategorized.
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