Don't Believe the Hype

2013 is nearly upon us, and with that brings talk of New Year resolutions. Most people are Gung-ho about incorporating their resolutions into every day life, at least until spring comes and priorities shift. While unofficially polling a broad spectrum of friends and colleagues I found it hard to join in the discussions about executing 2013 resolutions, because the three most popular topics that kept coming up, were ones that I can’t really get involved with. 

Start going to the gym more. I can’t do it. Cardiovascular activity causes an inflammatory response and makes me feel worse than I already feel. Walking for an extended period of time tires me out. On Christmas Day I went for a walk around town with my parents. It was a nice leisurely two hour walk through some communities near where I live. By the end of the walk I was limping, my back hurt, my shoulder and neck started to hurt and I was so exhausted that I needed to lie down and nap for a few hours. If not for my mom waking me up to eat dinner, I probably would have slept straight through till the next day. When I feel up to it, the one day a week when I go to the gym to attempt light core and strengthening exercises is all it’s going to be for a while. 

Watch less TV, and read more.  Since August of 2011 I have not plugged in my TV, it sits lifeless upon a shelf collecting dust. I have been reading many different genres of books, and  am shocked that even after the rave reviews I bestowed upon “Abraham Lincoln Vampire Hunter”, none of my friends have jumped at the chance to read it. I do have a friend who DVRs “Real Housewives of New Jersey” and “Ice Loves Coco” for me so I can keep up on my favorite “reality” shows when the mood strikes. 

Diet to lose the weight gained over the holidays and maybe a few more pounds on top of that. I’m not one to brag, but this seems like the perfect time to mention that this is the second holiday season in a row where I have lost weight. I cannot indulge in the sugary holiday treats or in any of the traditional feasts that spur the holiday weight gain, so it is a non-issue for me. I am not saying I was perfect this holiday season, but the one day I strayed from my Lyme diet, did not cause any waistline expansion.

On December 21^st, during an office Christmas Party, I ate a handful of cookies. The end of the world was coming (12/22/12), and it was important for me to remember what a good sugar cookie tasted like. Later that evening after dining with my friend Laikisha on Lyme disease friendly food, I indulged in a cup of Frozen Yogurt with the most sugary toppings I could pile on at Sweet Frog. Want to know what happened the next day? We were all still here, and I was very uncomfortable as various parts of my body reacted poorly to my lack of discretion while sampling “end of the world” desserts. This is not the first time I have been tricked by an end of the world declaration. Pre Lyme-diet and diagnosis, I had the pleasure of sitting down for another “last supper” at the Cheesecake Factory at the Columbia Mall with my friend Bronwen on May 21, 2011. You are probably wondering why we chose the Cheesecake Factory in Columbia MD the night we were supposed to be raptured. On the morning of May 22^nd, if life as we knew it continued to exist, we were to compete in the Columbia Triathlon. We timed our dinner so that at 6:30 PM, the supposed time of rapture, we would just be finishing dinner and wouldn’t have to pay. As the story goes, we paid for dinner and raced the next morning.

This past year has had its share of ups and downs and as my health continues to be unpredictable I am sure 2013 will be more of the same. What are my resolutions for the New Year? Starting in 2013 I am no longer going to pay attention to the end of the world hype that the media enjoys shoveling down our throats from time-to-time. And perhaps I shall watch more TV, and try to gain a few pounds.

1988 was a Big Year

Highlights from this year in history:

•  The Hubble Space Telescope went into operation to explore deep space
•  The Washington Redskins were Superbowl XXII Champions
•  Television evangelist Jimmy Swaggart was photographed in series of hook-ups with prostitutes
•  The Lockerbie, Scotland airplane bombing, ordered by Lybia killed 270 people
•  CDs out-sold vinyl records for the first time
•  Famous quote from the year: "Senator, you are no Jack Kennedy" - Lloyd Bentson to Dan Quayle
•  Milli Vanilli’s first album was recorded early in 1988 and by the time it was released later that year two dancer/models had been picked to front the group

Personal Highlights:

• I got the Chickenpox 
• I got braces
• I am 99% sure I also got Lyme disease 

[Side note]: Returning to my 5^th grade classroom with fading pox and a mouth full of new shiny metal, probably set me back socially for a few years; but that is not what this post is about.

1988. Did I come to this conclusion using scientific evidence? Did I pull this year out of a hat since I previously mentioned I have no idea where or when I got Lyme disease? Did I call my mom up and ask when I was first diagnosed with tendonitis in my shoulders and neck?

If 1988 is the wrong year, blame my mom.

This past year I realized the discomfort and sometimes pain that I have associated with tendonitis in my shoulders and neck, which was first diagnosed in fifth grade, is not purely tendonitis. You’re probably wondering why it took me so long to figure this out. Now is probably a good time to properly introduce my love of swimming and endurance events since some people reading this blog do not know what my life consisted of prior to my Lyme diagnosis. 

My competitive swimming career began when I was five and ended my senior year of college. After sixteen years I took a year-long break from swimming and tried to become a gym rat. During that time I was talked into training for a triathlon. My first triathlon, and what I thought would be my last triathlon, was completed in 2001. It turned into a full-time hobby. Ten years later after completing a handful of duathlons and sprint distance triathlons, 50+ Olympic distance triathlons, 7 half Ironman triathlons, 5 Ironman triathlons, 6 marathons, 2-50k trail runs, various open water swimming events and one Ragnar Relay my body called it quits on me and I had to stop training and racing. Two months after that came the chronic Lyme disease diagnosis that has since inspired this blog. The amount of training that went into preparing for these races and participating in these races pushed my body to new limits, and with that came a lot of aches and pains that were always easily explained away as overuse injuries. What came first... The overuse injuries or the chronic inflammation from the Lyme disease?  In all actuality it is probably a good mix of both. Some of my injuries were legitimate overuse and/or accidents and some of my injuries were caused by chronic inflammation I didn’t realize I had. One things for sure, with my bodies inability to get rid of inflammation, none of my injuries ever got the chance to fully heal. 

And now back to the 5th grade 

It seemed reasonable for an athletic kid who swam 5 to 6 days per week to have developed tendonitis. I was always complaining about feeling stiff and was told to stretch more. In addition to stretching, I did some physical therapy here and there, took some anti-inflammatory medication during the times when my shoulders were really bad, and kept right on swimming up until my first Lyme disease diagnosis in 1994. Do I remember thinking my tendonitis felt worse when I was diagnosed with Lyme disease? No. I don’t think so. I assume I was associating the neurological issues, which I detailed in “Lyme Disease-Episode 1”, with the Lyme disease and was associating the “tendonitis” in my shoulders and neck, which had been a staple in my life for about six years at that point, as a separate issue. After my treatment I was deemed healthy,I finished off my senior year of high school and I went to college. I still had issues with my shoulders and neck, but it was "tendonitis", so I just kept on swimming.

Looking back with my newly acquired Lyme knowledge, I realize my junior year of college was the first time my Lyme disease came out of remission. My shoulders and neck got so bad that I couldn’t swim. I had to wear button down shirts everywhere because it was agonizing to move my arms, and putting on shirts that involved lifting my arms over my head was not even an option. Not only were my shoulders and neck affected, the pain also spread into my shoulder blades. I often claimed it felt like somebody was stabbing my shoulder blades from the inside. I was really uncomfortable and miserable. After months of rigorous physical therapy to treat my “chronic tendonitis” I wasn’t seeing much improvement, but was told I was better. Eventually during my senior year, I was able to get back into the pool and swim very short events. My shoulders and neck never really recovered and I retired from swimming after I graduated college… until I took up the triathlons mentioned above. Even when training for the swimming portion of the triathlon and other various open water events, I knew my limitations because too much swimming really irritated what I thought was my chronic tendonitis. Running and biking also indirectly irritated my shoulders and neck, but that didn’t stop me from loving the sport.

I haven’t worked out with any regularity for the past 15 months. I try to make it to yoga once a week and to the gym once a week to do some light core and strengthening exercises, but it is dependent on how I am feeling, and I often miss weeks at a time. My shoulders and neck hurt just as much as they did when I was swimming and training for triathlons 5-6 days per week, and I am also having issues with my shoulder blades again. The discomfort ebbs and flows with the inflammatory response from the Lyme disease treatment. In fact, sometimes I wake up with full body aches that remind me of the feeling I get the day after running a marathon, yet I literally haven’t run since September 2011. This is the longest stretch of time that I have been inactive from training for a race since my age was in single digits, and I am still feeling all of the aches and pains in my muscles, tendons and joints that I used to associate with working out and racing. 

It appears that mental toughness and the desire to push oneself to new physical limits can beat out the simple common sense voice that occasionally whispers “if it hurts this much, maybe you should stop”. Perhaps in the future I will listen more intently, or maybe common sense should start yelling at me instead. 

Additional Tick-Borne Diseases

I am 13 months into my treatment, there is no end in sight, and I am truly fortunate.  Yes, fortunate. As tough as this whole situation has been, and will continue to be on me, I am fortunate that I can still walk and I am not in a wheel chair. I am fortunate that I am not in a constant state of Herx reaction because my body can’t detoxify itself. I am fortunate that I have not gone completely blind. I am fortunate that I can get out of bed and go to work and I don’t have to fight with the insurance company over short term disability payments. I am fortunate that my teeth aren’t rotting and falling out. Over the past year I have had the opportunity to meet other chronic Lyme disease patients and discuss similarities and differences between our battles and treatments. What you just read are some of the experiences that have been shared with me. 

When discussing chronic Lyme disease there will always be the inevitable stories about the long road to diagnosis, the constant changing of the antibiotics and supplements, the diet adjustment, the fatigue and the overall stress that comes with being chronically ill and having to completely change life as you know it, in order to combat the disease. Even with the broad commonalities I just mentioned, you will be hard pressed to find Lyme disease patients experiencing the exact same symptoms and effects; this is why it is so hard to build a protocol for a standard treatment, let alone detect it in the first place.

As previously mentioned, in addition to Lyme disease, I am being treated for three tick-borne co-infections. They have played a major role in my Lyme journey thus far, so it is about time I introduce them.  Here they are in alphabetical order; I don’t want to show favoritism:

Babesiosis is an infection caused by a malaria-like parasite, also called a “piroplasm,” that infects red blood cells. Ticks may carry only Babesia or they may be infected with both Babesia and Lyme spirochetes. People can also get babesiosis from a contaminated blood transfusion.

Symptoms of babesiosis are similar to those of Lyme disease but it more often starts with a high fever and chills. As the infection progresses, patients may develop fatigue, headache, drenching sweats, muscle aches, nausea, and vomiting. Babesiosis is often so mild it is not noticed but can be life-threatening to people with no spleen, the elderly, and people with weak immune systems. Complications include very low blood pressure, liver problems, severe hemolytic anemia (a breakdown of red blood cells), and kidney failure.

Bartonellosis is often mild but in serious cases it can affect the whole body. Bartonella are bacteria that live inside cells; they can infect humans, mammals, and a wide range of wild animals. Not all Bartonella species cause disease in humans. Bartonella henselae causes an important emerging infection first reported in 1990 and described as a new species in 1992. It is mainly carried by cats and causes cat-scratch disease, endocarditis, and several other serious diseases in humans.

Bartonella bacteria are known to be carried by fleas, body lice and ticks. Scientists suspect that ticks are a source of infection in some human cases of bartonellosis. People with tick bites and no known exposure to cats have acquired the disease.

Early signs of bartonellosis are fever, fatigue, headache, poor appetite and an unusual streaked rash. Swollen glands are typical, especially around the head, neck and arms. Gastritis, lower abdominal pain and sore soles are also common symptoms.

Mycoplasma is pleomorphic bacteria which lack a cell wall and, as a result, many antibiotics are not effective against this type of bacteria. There are over 100 known species of Mycoplasma, but only a half dozen or so are known to be pathogenic in humans. The pathogenic species are intracellular and must enter cells to survive. Once they are inside the cells, they are not recognized by the immune system and it is difficult to mount an effective response.  Mycoplasma species have been identified on ticks.

Symptoms include fatigue, musculoskeletal symptoms and cognitive problems.

Each co-infection calls for different medicinal protocols, hence the copious amounts of antibiotics and supplements I am taking which were featured in a previous post. Did this all happen from one tick bite? Multiple tick bites? Have I been bitten again since my original diagnosis or did this really come out of remission?  All questions I would love to know the answers to, but probably never will. What I do know is I need to keep moving forward with a positive attitude. 

You probably think I am a “glass half full” type of girl after reading this post. Truth be told, my glass is always half spilled. I just want to get better, and I believe a positive attitude is an important piece of my treatment. 

Lyme Disease: Episode I - Why Couldn't I Just Catch A Cold?

[Opening Crawl]

A long time ago, in a suburb of New York City…

LYME DISEASE

Episode 1

WHY COULDN’T I JUST CATCH A COLD?

It is an internal period of unrest for Julie as undetected Lyme disease bacteria is invading various parts of her body causing joint pain/swelling, lack of energy, trouble focusing, poor memory, rage and blurry vision.

Little do Julie’s parents know that hormone imbalance is not fully accountable for her teenage attitude problem; a much darker issue has secretly been constructing a powerful empire of bacteria that are slowly wreaking havoc on her being and behavior.

Meanwhile with the help of an infectious disease doctor a powerful IV drug has been dispatched in an attempt to drive the bacteria out of its hiding place and wipe it out forever…

[Camera tilts down through space and focuses on a house in Cross River, NY]

“Julie, please take the garbage out,” to which I replied “Okay.”

5 Minutes Later

“Julie, come on, take the garbage out,” to which I replied “Okay, in a second.”

10 Minutes Later

“JULIE… TAKE THE GARBAGE OUT,” to which I replied “SHUT UP!!! No need to yell at me, just ask nicely and I’ll do it”.

It was 1994, I was a senior in high school, and I couldn’t remember what my mom was asking me, or why I was yelling at her. Irrational, irritable, short fuse, frustration; Lyme rage or typical teen rage? I think I possessed the perfect balance of both. 

In previous posts, I have talked about how Lyme disease bacteria are sneaky and can go undetected by mimicking other ailments/diseases. My joint pain and inflammation was attributed to tendonitis from over use. I swam competitively from the time I was five years old, and had no shortage of knee, shoulder and neck issues leading up to my Lyme disease diagnosis. It was the memory lapses, lack of energy and a vision problem that seemed to develop overnight that landed me in the doctor’s office. 

Before I finished listing my symptoms the doctor told me I had Lyme disease, and judging by the neurological issues I was experiencing, I had been living with it for quite some time. We discussed the fact that just because I never saw any ticks on my body or developed the tell-tale Lyme disease rash that the rest of my family and half of my friends I grew up with developed when they got Lyme disease, didn’t mean I didn’t have Lyme disease.  Blood work was drawn, and I left the doctor’s office with a prescription for Doxycycline. A few days later my Lyme disease test came back negative. I was told to continue the treatment for Lyme disease because the tests were not always accurate (not much has changed in regards to Lyme testing in the past 17 years). 

After a few weeks of treatment the doctor was not pleased with my progress and wanted to prescribe a one month course of IV medication. Without a positive Lyme disease test the medication wouldn't have been covered by my health insurance. My blood was drawn two additional times, and then sent to two different labs to be analyzed; one test came back negative, and one test came back “barely positive”. Shortly after the positive result was received, an intravenous catheter was placed in my right arm, and I administered my own medication when I was not at school. How bad ass is that?

I don’t know about you guys, but I hate needles, I hate IV’s and I hate having tubes hanging out of my arms. I am well versed in the emergency room visits where IV’s have been necessary; so this is not an exaggeration. I can never relax my arm, I always have to have it pointing out straight away from my body with my palm open toward the ceiling which causes my shoulder to hurt, but I never want to set my arm down on the bed or across my own body because it feels weird and uncomfortable. I know some of you are nodding in agreement right now. 

Imagine having an intravenous catheter in your arm for a month. I couldn’t sleep well because my arm was throbbing and sore, and I could never find a comfortable position. I couldn’t get the catheter wet, so I became an expert at showering with my arm taped up in plastic. I couldn’t swim, but that didn’t stop me from weight training with an ace bandage wrapped around the catheter so it wouldn't get knocked out of my arm. The weight training led to a couple of vein collapsing incidents, which led to the catheter having to be moved to various locations along my hand and arm, which led to bruising and egg-sized lumps scattered about. Why yes, it looked like I was a junky. Why didn’t I just take a month off from physical activity and let the medicine work its magic? The doctor never told me I had to rest, truth be told, he cleared me for weight lifting. Since swimmers do not get their broad shoulders from sitting on the couch and watching IV medication drip out of a bag into their veins, resting never crossed my mind. 

After what seemed like the longest month ever, the catheter was removed from my arm, and I felt great. I had responded well to the treatment and was told I was better. By the time I left for Washington DC to attend college in late August of 1995, my miserable Lyme disease experience was the furthest thing from my mind. 

My Lyme disease came out of remission my junior year of college. If I knew then what I know now, I would have realized the “chronic tendonitis” diagnosis in my shoulders and neck, which knocked me out of swimming for a season, was actually inflammation from Lyme disease... and I would have gotten treated for it again. 

Life is Burrito-full

I don’t know when my obsession with Chipotle began, but I know exactly when it ended. 

“If George Washington or Abraham Lincoln were alive today, they would want me to live life on the edge and have a burrito” – or so I claimed when I invited a group of people to join me for a President’s Day celebration on February 20, 2012 at Chipotle. Do I celebrate President’s Day? No, not really, but it was a day off from work and my first planned foray into eating something that was not a part of the Lyme Inflammation Diet.

Q: Hey Julie, why would you purposely go eat something that you were told to stay away from?

A: Truth be told, changing your diet due to a health crisis is like adding a side of stress to an already heaping plate of stress; and I really wanted a burrito. If you happen to be someone who prefers a pint of blueberries over a pint of ice cream while navigating through a rough spot, than you probably do not understand the point I am trying to make.

Q: Didn’t you have some cake and a beer on your birthday a month earlier?

A: That was my first “unplanned” foray into eating something that was not on my special diet and at that point in time I didn’t understand the importance of the food restrictions because I had been so faithful to my diet and had not experimented enough to fully understand the consequences of straying from it. 

Q: Was the burrito worth it?

A: Does a bear shi…. Keep reading to find out.

In an effort to boost my spirits that took a slight dip at the end of January upon hearing the news I may be on medication for another six months to a year, a brilliant plan was hatched; once a month I was to pick a spot where I could chill with friends and enjoy some good eats from my pre-Lyme disease days. This plan led to a few food-triggered incidents and was abruptly halted in May. Hold on for the ride as I bring us back to President’s Day, 2012.

There I was, like a kid in a candy store, very excited to be at Chipotle; perhaps too excited. In a valiant effort to not break every single one of the food rules I had been following, I ordered a chicken burrito bowl with brown rice, thus keeping my lunch gluten free. On the other hand, my dairy free lifestyle was interrupted by a heaping fistful of cheese. I had yet to discover my sensitivity to tomato, so I ended up with a couple of different salsas in my bowl. I had not attempted to add corn back into my diet at this point in time, yet that did not stop me from telling them to add that to the bowl as well. I would be remiss if I didn’t mention the side of chips that I also inhaled.

Half way through lunch I was extremely full but I pushed on because I don’t believe in leftovers. By the end of lunch I was happy, tired and a bit bloated. After running a few errands I was so exhausted that I took up residence on a friends couch. For five hours I sat watching back-to-back episodes of “Idiot Abroad” while guzzling water and marveling at the effect that lunch had on me.  My feet and hands swelled up and my lips started to crack. I was incredibly thirsty, yet drinking water was adding to my bloated feeling without really quenching my thirst. The show was very entertaining and I was battling my body’s desire to nap so I could continue to watch it. I had a rash along the side of my face and the aching and stiffness in my joints got progressively worse as the day wore on. 

The rash and the increased joint aches and stiffness subsided within a day, but for 3 days after lunch I was completely backed up. Despite feeling miserable I was making jokes about carrying around a burrito baby and hoping that I wouldn’t have to go #2 at work when things became unclogged. I thanked the big man upstairs when I passed the “burrito baby” one night after work, and then a funny thing happened. It took another day and a half of me spending a lot of time on the toilet to really get to the point where I could say, beyond a shadow of a doubt, that I was really burrito free. I don’t own a scale, but I am pretty sure I was about five pounds lighter once the whole ordeal ended.

Too much information, I know-I know, but I did it in a G-rated fashion with no swearing or in-depth detail to make a point. Incidents like this highlight the importance of the role that changing my diet is playing in my quest to beat the Lyme. After two+ months of clean eating, cooking my own food and knowing exactly what ingredients went into every dish, I went out to eat and it took me 4.5 days to recover. The flare up in my joints and the rash on my face were a reaction to the food I ate that I had previously eliminated from my diet. The amount of sodium in the food, which caused the major dehydration and bloating and led to my other issue, was alarming. I had never stopped to think about, or even realized the amount of sodium that is consumed while eating out at restaurants, until I started preparing all of my own food. This statement is not limited to my experience at Chipotle. I have been following the Lyme Inflammation Diet for over a year now, and even while sticking to my diet at the few restaurants around town where I can eat within my restrictions, I still get dehydrated. Many will argue it’s because I am sick. I argue it is because I am the healthiest I have ever been in my life, except for this Lyme disease crap, and there is too much sodium in the standard American diet. I have plenty of time to prove my point to you as I continue to write about my journey, so you’ll just have to trust me for now. 

Just because my body can no longer tolerate burritos, doesn’t mean that I still don’t love Chipotle. I’ll still smile every time I pass one, and I will proudly wear my Chipotle bike jersey when I can resume working out. 

*I was never sponsored by Chipotle, I just ordered the bike jersey off of their website many years ago because it was so fashionable.