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9 things you need to know about Borrelia miyamotoi 02/18/2013

Posted by thetickthatbitme in Diagnosis, Media, TBID Facts.
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4 comments

Several months ago, when the patient support group that I attend first began discussing Borrelia miyamotoi, a Google search (or Bing…whatever…) for those two odd words yeilded very little. Now, after the publishing of a few key papers in the New England Journal of Medicine, every major news outlet seems to be aware of this “new” Borrelia.

From a scientific perspective, Borrelia miyamotoi is interesting because it challenges a dichotomy that was established by researchers of tick-borne infectious diseases. When I first started reading about the Borrelia genus, I learned that Borrelia species could be sorted into two major categories: the Lyme disease-like group and the relapsing fever group. That is, Borrelia species like B. burgdorferi, B. afzelli, and B. garinii–which are genetically more similar, are carried by hard-bodied ticks, and cause the same pattern of symptoms (rash, joint pain, fatigue–were put in one group. Other species, like B. hermsii and B. parkeri–which differ genetically from these Lyme-like bacteria, are carried by soft-bodied ticks, and all cause relapsing fever symptoms–were put in the other group. One group for Lyme-like illness. Another group for relapsing fever-like illness. One group for hard-bodied ticks. Another group for soft-bodied ticks. The dichotomy is so clear that the ticks are sometimes referred to as “Lyme disease ticks” and “relapsing fever ticks.”

The funny thing about dichotomies is that they only create the illusion of two distinct categories. The reality is far more messy and characterized by shades of grey. Enter Borrelia miyamotoi. According to its genetics, it should go in the relapsing fever group, but it’s transmitted by the same hard-bodied ticks that carry Lyme disease. According to its symptoms, it falls somewhere in the middle. About 10% of people get a rash, like with Lyme disease, while others don’t. Some people get relapsing fevers, while others don’t. It’s all so very confusing!

B. miyamotoi phylogenetic tree

A Borrelia family tree (technically called a phylogenetic tree) highlighting strains of B. miyamotoi. Note the groupings of the other Borrelia. Via Platonov AE, Karan LS, Kolyasnikova NM, Makhneva NA, Toporkova MG, et al. (2011) Humans infected with relapsing fever spirochete Borrelia miyamotoi, Russia. Emerg Infect Dis 17: 1816–1823.

As usual, both the researchers and the news media seem to be trying to downplay this. Some are unwittingly obscuring the issue altogether. “Paging Dr. House: There [sic] a new tick-transmitted spirochete in town…” writes Melissa Healey of the L.A. Times. “The New England Journal of Medicine on Thursday published two reports documenting its arrival on U.S. shores.” As if the bacteria hopped on a boat from Russia, and that’s how it got here! Forget the strong possibility that it was here all along and our scientists just failed to detect it. Forget the possibility that the countless numbers of people who tested negative for Lyme disease and were denied treatment could in fact have this similar infection.

Dr. Peter Krause, lead author on the NEJM study, says (in a video for Yale News) he doesn’t think people should panic about Borrelia miyamotoi. At the same time, he admits that this is an infection that is affecting people in both the eastern and western United States–not to mention people in Europe and Asia. “We expect this disease to be found everywhere the deer tick is found,” he states. So don’t panic, but it’s everywhere.

Okay, so Dr. Krause is right when he says people shouldn’t panic, but that doesn’t mean that we shouldn’t learn more about this new–or not so new, as the case may be–infection, especially since many of us could have it right now. Here are nine things I think you should know about Borrelia miyamotoi.

1. Symptoms: Borrelia miyamotoi causes symptoms of tick-borne relapsing fever (TBRF), an illness often misdiagnosed as Lyme disease, or not diagnosed at all. Tick-borne relapsing fever, when left untreated, has some symptom overlap with Lyme: arthralgias, myalgias, chronic fatigue, and cognitive problems; however, it differs from Lyme disease in that most patients with TBRF get repeated episodes of fever, and they don’t get erythema chronicum migrans (EM), the “classic Lyme” bull’s-eye rash. We can guess that the long-term effects of B. miyamotoi infection are similar to those of other Borrelia infections, even if researchers are reluctant to admit it. Dr. Peter Krause, one of the authors of the study published in the January 17 issue of the New England Journal of Medicine, told the L.A. Times: “This is a very new disease, but none of the patients have had this long-term [neurological] trouble or other long-term symptoms,[…] it’s possible that we just haven’t seen it yet.” Long-term neurological problems from a disease that most doctors didn’t know existed until a few months ago? I’d say it’s very possible.

2. Transmission: Borrelia miyamotoi is transmitted to humans from the bites of hard-bodied ticks. Examples of these ticks include Ixodes scapularis (deer tick), Ixodes pacificus (western blacklegged tick), Ixodes ricinus (castor bean tick), and Ixodes persulcatus (taiga tick). (The first two tick species listed are common in North America, and the second two are found in Europe and Asia.)

3. Why you’re just hearing about it now: The B. miyamotoi bacterium was discovered in ticks and mice in Japan back in 1995. (It’s named after Japanese entomologist Kenji Miyamoto, who first isolated the bacterium.) In 2001, Dr. Durland Fish discovered B. miyamotoi in ticks in Connecticut, but according to a 2011 New York Times report, he “was repeatedly refused a study grant [from NIH] until the Russians proved it caused illness.” In 2011, Russian scientists, in collaboration with the Yale team that included Krause and Fish, published research that showed that B. miyamotoi infects humans. The patients in the 2011 study were in Russia, so B. miyamotoi didn’t really come on the radar for U.S. doctors until January 2013, when a study on U.S. patients was published by Krause and colleagues in the New England Journal of Medicine.

4. Testing: To my knowledge, there is currently no commercially-available test for B. miyamotoi, be it PCR, IFA, or Western Blot. B. miyamotoi has been detected using assays (tests) that were developed by university researchers in order to study the bacterium. That means, unless your doctor is at Yale or another large institution, it’s not likely that he or she has access to a test for B. miyamotoi. So if you suspect you may be infected, what can you do? That brings me to my next point.

5. People with B. miyamotoi infection are likely to test negative for B. burgdorferi (Lyme disease), unless they also happen to be infected with B. burgdorferi. Doctors who are only screening patients for Lyme disease are not going to catch all of the other Borrelia infections, like B. miyamotoi.

6. Genetically, B. miyamotoi is more similar to other bacteria that cause TBRF, like Borrelia hermsii. Therefore, people with B. miyamotoi infection may test positive for B. hermsii, another relapsing fever spirochete.

7. As with any infection, B. miyamotoi infection can be more serious in the elderly and in patients with compromised immune systems. If you or a family member is denied treatment, especially in the case of severe or life-threatening symptoms (like high fever), my advice would be to go to a tertiary care center (like a university hospital) and ask to be tested for B. miyamotoi. At the very least, doctors at a research hospital should be able to do a blood smear to look for spirochetes (Borrelia). PCR and antibody tests may also be available.

8.Treatment: B. miyamotoi probably responds in a similar way to antibiotics as other Borrelia like B. hermsii and B. burgdorferi. Researchers claim that it can be treated with a few weeks of oral antibiotics, but that is probably only for mild, acute cases. My guess (as a non-medical-professional) is that B. miyamotoi is just as resilient as its Borrelia cousins and requires 4-6 weeks of daily IV antibiotics. If you’re new to this blog, you might be interested in reading about my experience being treated with IV antibiotics for B. hermsii (relapsing fever).

9. Recommended reading: To learn more about B. miyamotoi, check out the new fact sheet, which includes links to peer-reviewed studies.

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What a difference a year makes! 07/14/2012

Posted by thetickthatbitme in Patient Stories, Treatment.
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A year ago yesterday was when I started my treatment for Borrelia hermsii. I left my home, my boyfriend, and my dog to stay with my parents so I could get treated with 42 days of IV antibiotics. Looking back on this time last year, so much has changed:

1. My knowledge level. I’m embarrassed to say that when I started treatment, I couldn’t even tell you if a tick has eight legs or six. (I never saw the ticks that bit me.) I knew nothing about the habitat or biology of ticks, and I didn’t know how many different diseases they can spread. I didn’t know how to spell Borrelia. Pretty much all I knew was that I was infected with a bacterium that was like Lyme but not Lyme that causes Relapsing Fever. This was strange to me because I never remembered having a fever–cold sweats, yes, but no measurable fever. I’d had IVs in my hand before when I’d been hospitalized, but I didn’t really understand what an infusion was, or that it mattered which vein a needle goes in. I had no idea what PubMed is. I’d read maybe three medical journal articles in my lifetime. Over those six weeks, I learned a lot from my doctor and other patients, and I kept learning through support group meetings and emails. Finally, I got up the energy and courage to launch this blog, and well…you know the rest.

2. My energy level. The fall of 2011 was when I should have realized something was wrong. I was student teaching in the mornings and teaching my regular classes at night. I remember what a struggle it was to get out of bed in the morning. Getting dressed was like running a marathon. I’d had back surgery the previous June, and I was in this hard brace that everyone called my turtle shell. But it wasn’t just my back that was a problem. Even with eight to ten hours sleep, by noon, I was struggling to stay awake. My 30 minute drive home on the freeway was terrifying. The only thing that kept my eyes open most days was if I was constantly chewing something, so I tried to always have snacks with me. When I got home, I’d take a 90 minute nap–which was never enough–and then I’d get up and go to work again. When the semester ended, I thought I would catch up on rest, but even only working part-time, I was constantly fatigued. I spent any time that I wasn’t working in bed. When I had to go on a business trip in March, I freaked out. How would I handle being on someone else’s schedule? How would I go six or seven hours without lying down? By June, I was freed from back braces, and my spine had healed, but I still felt awful. And I felt guilty. How had I become this lazy, unmotivated person who spends all her time in bed? A year later, I have my life back. I work two jobs, plus freelance work. I cook dinner for Boyfriend and me several nights a week, do all the grocery shopping, and keep the house clean. I walk my dog and ride my bike. I go shopping and to the movies with friends, drive long distances, and even occasionally babysit. Before, I only had the energy to do one or two of these things per day. I was a spoonie with a very low spoon limit. If I cleaned the house, that was it for the day. If I went to the store, I probably wouldn’t have the energy to cook the food I’d bought. If I taught a 3 hour class, I would come home and sleep the rest of the day. All of this I tried to conceal from my family and friends. I tried to be fine because there was no explanation for why I wasn’t.

spoon chasing

Spoon chasing. (Image via unfocusedcreativity.blogspot.com)

Looking at how much better I am now makes me realize how sick I was. Yesterday, I had a two-hour morning conference call, after which I worked on the computer for another hour. Then I ate lunch and went to the grocery store. When I got back, I cleaned out the fridge, put the groceries away, and then did a thorough de-clutter and clean of the entire house. I read a chapter in my book, took a shower, and went out to dinner with Boyfriend. All that activity would never have fit into one day when I was sick. I was up again this morning at 8:00, feeling rested.

Weather-style pain scale.

Weather-style pain scale. (Image via fibroofoz.blogspot.com)

3. My pain level. I was on strong prescription painkillers for a year and a half, starting in June 2010 after my surgery. Clearly, I didn’t get off them when I was supposed to, 6-9 months post-surgery. That’s because I didn’t just have back pain. It was in my hips, neck, and shoulders, too. The pain didn’t completely go away right after treatment. It’s been a slow progression. In the fall, I was able to wean myself off painkillers and just use heating pads when my back or joints bothered me. We know from the research that reactive arthritis may simply be part of the package for some patients with treated Borrelia infections. This is my framework for understanding some of my continuing aches and pains. For me, low-impact exercise, comfortable shoes, heating pads, and a memory foam mattress pad help a great deal. Whereas before my daily pain level rarely dropped below a four, even with drugs, now I’m at a one or a two most days, and I’m drug-free, aside from very rarely taking Advil.

What brain fog does to reading a book.

What brain fog does to reading a book. (Image via a-b-martin.blogspot.com)

4. My cognitive level. The ability to think, speak, and write clearly is essential to my livelihood. Having a Borrelia infection plunged me into what many people describe as a “brain fog.” For more than a year, I was sort of drifting through life, not able to think very clearly about anything. It came on gradually, and after my surgery, it got worse, which I attributed to the pain and the painkillers. Now I’ve met enough fellow patients that I see the pattern. I understand how this infection clouded my cognition. One of the reasons I didn’t start writing this blog while I was getting treated was that I couldn’t focus well enough. Even post-treatment, it took me a few months to start feeling sharp again. I really noticed the change this past semester when teaching got easier. I was able to learn the names of all my students within the first three weeks–which hadn’t happened the previous four semesters. My focus and mental endurance were so much better, as was my time management during class. I felt sort of like I’d woken up from a long sleep. The time in my life when I was very sick seems blurry. Now, not only do I have the energy to do more, but I have much better concentration. I can even go back and look at things I wrote two years ago and see the difference in sentence structure. All I can say is it’s good to be “back.”

What I’m doing to stay well, one year out:

egg

(Image via Wikipedia. Credit: Ren West)

1. Eating my eggs. You wouldn’t believe how “off” I feel if I go a day without an egg. That’s probably because my neurologically-damaged body likes choline, and eggs are full of it. I also find myself craving green vegetables. In fact, whenever friends ask me where I want to eat, I usually say, “Anywhere with good veggies.” I know there are many diets out there that are designed to help people with Borrelia infections avoid inflammation and other problems, and many of those recommend avoiding meat, dairy, gluten, and sugar. Personally, I’m not really cut out for that. I’m not the kind of person who can say, “I’m not going to eat X” when X is something that I really like, like sourdough bread, or milk, or chocolate. That’s not to knock the vegetarian, dairy-free, gluten-free, and/or sugar-free diets. I recognize that they do work for some people. However, I’m pretty sure that my body needs both meat and sugar to function normally, so I’ve always been opposed to giving up those. Other than being lactose-intolerant, I have no problems with dairy, and I don’t have more pain when I drink my Lactaid milk than on days when I don’t, so I’m not so concerned with the inflammation factor there. I seem to tolerate gluten pretty well, but I do try to limit my grains, as they’re not the best source of choline. No one gets between me and my egg sandwiches, though.

2. Staying active. I spent a large percentage of a year in bed, and going back there is very tempting at times, especially since during that time I developed a large collection of movies and TV shows, and my bed is VERY comfortable. Because I used to do most things from bed, I’m just now getting used to LIVING in my living room, WORKING in the office, and SLEEPING in my bedroom. (In fact, I’m breaking this rule now, typing the first draft of this from bed, but it’s a Saturday, and I’ve been working all week, so I don’t feel bad.) For me, staying active means not only “working out” (by walking the dog, riding my bike, and playing Dance Central on Xbox) but “getting stuff done.” I used to put off doing things and tell myself, “I’ll do it when I’m not so tired, or when I’m in less pain.” Now I don’t have those excuses, and it’s much less burdensome to get things done right away. Procrastination used to be a form of self-preservation. Now it’s a habit I have to work to break.

3. Preventing re-infection. After what I’ve been through, the last thing I want is another tick-borne infection, so I make sure that both my dog and I stay out of high risk areas for ticks. When we walk, we stay on the sidewalk. Boyfriend and I keep the yard clean–which is not too difficult since our backyard is mostly concrete. We treat Lucy monthly for fleas and ticks, and I’m always spraying that Cedarcide. I’ve decided not to do any hiking or camping for a while. When I want to enjoy the outdoors, I ride my bike or go to the beach.

4. Staying current on my tests. I get my blood drawn every 3 months so my doctor can check my antibody titer. My doctor said if I have a four-fold rise, then we’ll need to consider re-treatment. So far, I’ve been okay, but I want to be vigilant. I don’t want to get re-infected and not know about it.

Hope everyone is having a wonderful weekend!

The Choline Diet: Herbivore Style 07/01/2012

Posted by thetickthatbitme in Choline Diet, Tick-Lit, Whole Person.
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In the past, my choline diet posts have been mostly geared towards omnivores, as eating eggs and meat is an easy way to get one’s daily dose of choline. If you’re new to this blog–or just forgetful–I’ve been on a choline-rich diet since I started getting treated for Borrelia hermsii and Anaplasmosis last year. My doctor recommended this because I had some neurological involvement with my illness–brain fog, chronic fatigue, arthralgias–and there’s research that suggests that eating choline helps our bodies produce more of the neurotransmitter acetylcholine. Choline has also been linked to lower levels of inflammation. In addition, choline is particularly important for pregnant women, as higher choline intake during pregnancy is associated with a lower risk of neural tube defects in infants.

choline dude

Image via doubleeaglefitness.wordpress.com

So that’s why I’m always telling my readers to eat their eggs and meat and green veggies. However, since a study led by Scott Commins at the University of Virginia linking lone star tick bites to red meat allergies gained national media attention (ABC, CNN) a few weeks ago, I’ve been thinking about how to make my choline recipe recommendations more herbivore-friendly.

After my last choline-related post, I stumbled upon the USDA Database for the Choline Content of Common Foods, which is a fairly good resource (and handy since it comes in a searchable PDF), although it doesn’t include everything I like to eat. (For example, the desserts section is severely lacking.) The other issue with it is that the choline values are reported in mg per 100 grams of food, and the average person may not eat 100 grams of some of those food items in one sitting–particularly the spices. (100 grams of chili powder, anyone?) So keep in mind that the choline numbers below are based on that ratio, and don’t think you’re getting 120 mg of choline in a pinch of mustard seed. This week, I decided to go through the database and find the foods with the most choline. For my herbivore/vegetarian readers out there, whatever your reason for avoiding meat (moral, dietary, tick-bite-induced allergy…), here are the top choline sources from several non-meat categories:

Top 10 Veggies:

  1. edamame—56 mg*
  2. broccoli (boiled) —40 mg
  3. cauliflower (boiled) —39 mg
  4. tomato paste—39 mg
  5. artichokes (boiled)—34 mg
  6. peas (boiled)—28 mg
  7. spinach (cooked) —28 mg
  8. asparagus (boiled) —28 mg
  9. sweet corn (boiled) —22 mg
  10. red potatoes (baked) —19 mg

Top 10 Fruits:

  1. dried figs—16 mg
  2. clementines—14 mg
  3. avocados—14 mg
  4. dried apricots—14 mg
  5. raspberries—12 mg
  6. raisins—11 mg
  7. prunes—10 mg
  8. mandarin oranges—10 mg
  9. medjool dates—9.9 mg
  10. bananas—9.8 mg

Top 10 Nuts and Seeds:

  1. flaxseed—79 mg
  2. dry roasted pistachios—71 mg
  3. roasted pumpkin seed kernels—63 mg
  4. roasted cashews—61 mg
  5. dried pine nuts—56 mg
  6. sunflower seed kernels—55 mg
  7. almonds—52 mg
  8. hazelnuts—46 mg
  9. dry roasted macadamia nuts—45 mg
  10. pecans—41 mg

Top 5 Legumes:

  1. creamy peanutbutter—66 mg
  2. boiled navy beans—45 mg
  3. baked beans—28 mg
  4. firm tofu—28 mg
  5. soft tofu—27 mg

Top 10 Spices:

  1. mustard seed—120 mg
  2. dried parsley—97 mg
  3. garlic powder—68 mg
  4. chili powder—67 mg
  5. curry powder—64 mg
  6. dried basil—55 mg
  7. paprika—52 mg
  8. ground turmeric—49 mg
  9. ground ginger—41 mg
  10. onion powder—39 mg

*All measurements are given in mg/100 g of food

I hope these lists get you on your way to a diet more rich in choline, whether it includes meat or not.

This concludes the herbivore section of this post. If you don’t want to be tempted with any meat, try clicking over to some of my other posts.

***

If you’re here in search of choline diet inspiration of the omnivore variety, I haven’t completely forgotten you. Here’s a glimpse of what I had for lunch.

steak sandwich tomato avocado

Steak sandwich on pumpernickel with avocado and tomato.

Happy Sunday, everybody! And watch out for ticks!

A fellow patient shares her story 05/30/2012

Posted by thetickthatbitme in Diagnosis, Patient Stories, Treatment.
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When I started this blog, one of my goals was to somehow extend the community and knowledge base of my support group to other patients out there in the ether. Up to now, I’ve been doing this by sharing research, either that was introduced to me by my doctor or members of the group or that I stumbled upon on my own, and by sharing my personal journey. A few weeks ago, a third way of accomplishing this goal occurred to me: to let the voices of other patients from the support group speak through this blog. Today’s post is my first attempt at that. Leigh is a member of my Borrelia hermsii patient support group who has generously agreed to share her hermsii story. If you have questions for her, feel free to leave them in the comments.

Leigh’s Story

gray whale

Gray whale. (Image via Wikipedia)

I moved to a beautiful coastal area and once I discovered that I could watch grey whales migrating south from the shoreline, I would hike out, sometimes, twice a day to see them.  I never saw the bug that bit me, but I had what I thought was a mosquito bite that developed a red ring around it about a week later.

A couple of days after the bite, I left for China where I spent much of the trip sick, which I attributed to the trip. I caught a cold with a fever, but then got somewhat better. Two days before we left for home, I had terrible stomach problems. The Chinese airports have fever detectors you have to walk through before you can board any plane. I loaded up on Advil, Tylenol and Pepto Bismol to get home. Still, all of my symptoms seemed explainable; travel, food poisoning, jet lag.

It was now week three and I at least knew that a rash around a bug bite wasn’t a good thing, but when I made an appointment with my dermatologist he wasn’t available for another three weeks. I didn’t know I needed to drop everything and run to any doctor, so I waited.  I kept getting alternately sick and better.  By the time I saw him I was having terrible headaches.  I was also losing concentration and feeling a bit “foggy.” The dermatologist immediately thought it was Lyme disease because of the red ring, and prescribed a very low dose of antibiotic. On the way to pick up the antibiotic, I drove off the road, hit a tree and wrecked my car.

After a little research, I found a local Lyme specialist who prescribed three antibiotics, Zithromax, Ceftin and Flagyl, each twice a day. After two months of this, it wasn’t working.  I had stomach problems. I was very weak, tired, I had terrible headaches and my neck hurt so bad I couldn’t hold my head up very long.  I couldn’t drive. I would sit at my computer unable to use programs I had been proficient at. I would repeat myself in conversations. I would make phone calls at odd hours, unaware of the time.  I couldn’t do simple math problems.  I couldn’t bear loud noises or bright light. I lost my sense of balance. I was rarely up or awake. I thought I was dying. I was neglecting my son and my husband, who insisted I look for another doctor.  I made appointments with four different doctors.  Luckily, the first was a neurologist who insisted I make an appointment with a specific infectious disease specialist in our area.

My appointment wasn’t for a week, but I realized I wouldn’t make it through the next week and he saw me the next morning. He was so off the wall and quirky that I had a friend of mine, who is a doctor, make sure he was a legitimate doctor!  He told me that if he could make me laugh, he could make me better. He retested me and though my initial tests had shown a slight positive for Lyme, this test showed a strong positive to Borrelia hermsii, which explained the weak cross reaction for Lyme, another Borrelia. All of the literature says Borrelia hermsii doesn’t exist at low altitudes, but I know what I know, and I was at sea level when I was bitten. I asked the doctor what made him even guess Borrelia hermsii? He said it wasn’t rocket science; Borrelia hermsii is more prevalent in the west, and Lyme in the east.

The doctor prescribed a treatment that I had read showed promise, intravenous Ceftriaxone for six weeks. At this time, I was introduced to another “Lyme” sufferer who tried to talk me out of seeing this doctor and wanted me to see her Lyme specialist. We decided to compare notes in six weeks to see who was doing better. At the end of my treatment, there was no comparison between us. I was much better and she soon became his patient.  She also had Borrelia hermsii, not Lyme.

I continued to be tested; my results have not gone down to a negative reading and may not ever.  It showed up again 6 months after the first treatment in the form of a four-fold rise in my titer, but at least I caught it before I had raging symptoms again. I was retreated with Ceftriaxone followed by Ertapenem.

It’s now been almost a year since the second treatment and I have my life back.  I feel focused. I’m working and doing things with my family. I’m planning a trip to Alaska with them this summer. I think the neck damage will always be with me, but even it’s better and at least manageable. I am eternally grateful to the miraculous chain of events that led me to this doctor and this treatment.

I was fortunate that I discovered a doctor who believes in Lyme disease and other tick borne infections. There are many doctors out there, along with uncooperative insurance companies, who doubt that Lyme and Borrelia infections even exist. Because of this there are many Borrelia infections that we currently don’t have tests for. I have encountered some skepticism in the medical field especially as I seek treatment for the physical damage that was caused by the infection. I believe that when you know something is wrong you have to be your own advocate. Only time will tell if I’m over this. At least I’ve quit running into trees!

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

Posted by thetickthatbitme in Treatment.
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2 comments

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.

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

Posted by thetickthatbitme in Peer-Reviewed, Tick-Lit, Treatment.
Tags: , , , , , , , , , , , , , , ,
3 comments

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!

Eat Your Eggs, Benedict! 04/22/2012

Posted by thetickthatbitme in Choline Diet, Whole Person.
Tags: , , , , , , , , , , , ,
5 comments

If you know my story, you know that when I was diagnosed with B. hermsii and Anaplasmosis, my doctor put me on a high-choline diet. Why choline, you ask? Choline is a B vitamin that aids in the transmission of nerve impulses from the brain through the central nervous system–this process is essential to functions like memory and muscle control. Since Borrelia like to attack the central nervous system, choline is especially important for people with (past and present) B. hermsii and B. burgdorferi infections. People who eat diets high in choline have also been shown to have lower levels of inflammation (like inflammation of the joints in Arthritis) than people who don’t. You can read more about choline here.

Enter the Benedict. It is by far my favorite egg-based dish, and I enjoy making it at home just as much as I do eating it for brunch in a fancy restaurant.

"Eggs" Benedict Talley (Mehcad Brooks) from HBO's True Blood. Photo via hbo.com.

One large poached egg has 100 mg of choline, so if you eat two, you get about half of your recommended daily amount (425 mg for women, 550 mg for men). Add to that other high-choline foods like smoked salmon (129 mg), Canadian bacon (39 mg), portabella mushrooms (39 mg), spinach (35 mg), asparagus (23 mg), avocado (21 mg), and tomato (6 mg) to get your choline fix!

Here are my top five Benedicts:

1. Old Fashioned but Fried

for those mornings (or afternoons, or evenings!) when I’m feeling traditional, yet lazy

I learned this simple recipe from my mother, and it

Benedict Asparagus

Image via firsttimerscookbook.com

brings back all kinds of fond childhood memories. A toasted whole-wheat English muffin, topped with pan-fried Canadian bacon and over-easy eggs (make sure they’re still a little runny, because that’s the best part). The hollandaise sauce I usually make with one of those sauce packets you can find in the grocery store (next to the gravy packets). It’s easy–you only need to add milk and butter–and, in my opinion, it tastes better than the from-scratch hollandaise recipes I’ve tried. Because of the butter and bacon, this is a slightly fattening meal, so I balance it with a side of boiled asparagus, which tastes delicious with the hollandaise sauce and adds 23 mg of choline to this meal!

Choline count: eggs 200 mg + Canadian bacon 39 mg + asparagus 23 mg = 262 mg of choline

2. Crab Benedict

for when I’m feeling crabby or rooting for the Terps

I’ve never made this one at home, but I’ve had it at Toasties Cafe, and it is delicious!

Toasties Crab Benedict

Image via Yelp.com.

Choline count: eggs 200 mg

3. Portabello Mushroom Benedict

for the fungus-lovers amongus

If you’re looking for a meatless meal or just craving these yummy mushrooms, this is the Benedict for you. Check out Jackie Dodd’s recipe at TastyKitchen.com, which also includes spinach, tomatoes, and Sriracha for a kick!

Portobello Mushroom Benedict

Image via TastyKitchen.com

Choline count: eggs 200 mg + portabello mushrooms 39 mg + spinach 35 mg = 274 mg of choline

4. Tomato Avocado Benedict

because I’m a California girl

My mouth was watering as I scrolled through SoupBelly.com’s deliciously illustrated recipe for this west-coast Benedict. If you want to make it even more California, use sourdough English muffins.

Avocado Tomato Benedict

Image via soupbelly.com.

Choline count: eggs 200 mg + avocado 21 mg + tomato 6 mg = 227 mg of choline

5. Eggs Hemingway

for when I’m feeling literary

This one may seem a bit fishy, but I assure you it’s delicious and packed with choline. It’s also called Norwegian Benedict. Here’s a recipe at food.com that includes not only salmon but spinach, too!

Salmon Benedict

Image via Wikipedia.

Choline count: eggs 200 mg + smoked salmon 129 mg + spinach 35 mg = 364 mg of choline

Now that I’ve made myself really hungry, I’m going to go make my own Benedict. Hope you enjoy these eggcellent (sorry, I couldn’t resist) high-choline meals!

Curious about Tick-borne Infections? 04/21/2012

Posted by thetickthatbitme in TBI Facts.
Tags: , , , , , , , , , ,
2 comments

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!

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