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. 

Buckle Up and Enjoy The Ride

“Do not be alarmed if the pain spreads into your chest and you experience air hunger”.

air hunger [′er ‚həŋ·gər]: a form of respiratory distress characterized by gasping, labored breathing, or dyspnea.

Early one spring morning I awoke before the birds with an uncomfortable squeeze on my ribcage. Maybe an uncomfortable squeeze is the wrong way to describe it. Scratch that. Early one spring morning I awoke before the birds because I thought someone was sitting on my back. Imagine being incredibly groggy in a dark room staring straight up at the ceiling while trying to figure out why you feel like you are lying face down in your bed with somebody sitting cross-legged across your shoulder blades.  (15 years ago this scenario may have led to a different story, but alas this is not spring break, it is Lyme disease).

During the first few hours I moved around gingerly, but as the rib cage pressure increased and breathing began to hurt, I climbed into my bed and stayed there. A spot on my spine, a bit above my shoulder blades, started to get sore. The soreness grew with intensity over a span of a few hours until it became an unbearable pain that was shooting into the base of my neck. Then my jaw started hurting and a searing pain started radiating out of the sore spot on my spine into my shoulder blades. My skin felt like it was crawling. My spine felt like it was on fire, my shoulder blades felt like they were getting stabbed and my neck and jaw were painfully stiff and achy. I lost feeling in both of my hands and ended up with a splitting headache. Moving and laying still were equally distressing/agonizing so I just tossed and turned and tried to find a comfortable spot to lie in. Between sweating profusely and cursing a lot, I managed to mumble a few things to a concerned friend who stopped by to check on me and make me dinner. This Herx reaction lasted for a day and a half, and the pressure in my ribcage remained for about two and a half months. Yes, I walked around for two and a half months feeling like someone was sitting on my back. On some days it hurt to take deep breaths and my back was visibly inflamed, on other days the pressure was just an annoyance and my back looked normal. 

I just so happened to have an appointment with my doctor a couple of days after this particular experience, and that is when I was informed that if the pain spread to my chest and I experienced air hunger, I shouldn’t be alarmed. I didn’t know what air hunger was until I Googled it later that night. I can promise you, if I wake up one morning with chest pains, gasping for air, I am going to forget that I was told not to be alarmed. So far the chest pain scenario has not happened. The pressure in my ribcage has returned on a couple of occasions, nothing as drastic as the first time. Eight months later, the spot on my spine, which I now refer to as ground zero, is still sore and inflamed. The degree of soreness and inflammation vary from day to day. On the bad days my neck also flares up, which affects my flexibility and by default my parallel parking; but that is another story.

...And now a Herx with a twist... 

Much like a wedge of lime can add a zesty kick to your whiskey, vertigo can do the same to your Herx reactions. 

One afternoon I was walking around my office. Maybe walking is the wrong way to describe it. Scratch that. One afternoon I was stumbling around my office because I couldn’t quite keep my balance. I went to the nurse at work and told her I thought I had an inner ear infection. Before she looked into my ears she asked if I was on any medication. As I was rattling off the list of antibiotics, she put her pen down, stopped writing, looked up at me with alarmed eyes and calmly said, “I think your medication is the culprit, not your ears”. And then she added, “What are you being treated for”? After a long conversation about Lyme disease, she checked my ears and told me that one looked like it may have a little fluid in it, but that she was sure my balance issues were from my medication. A couple of days later I had two extremely concerned friends standing over me while I was sweating bullets in my bed, complaining of spine and neck pain while also lamenting about how nauseous and dizzy I was. This was a first for me; a Herx reaction with a side of vertigo. This particular episode did not involve my ribcage, but did involve the sharp pains in my spine and neck. I was ready to try and sleep it off, but my friends were worried and wanted to make sure it really was vertigo, so they took me to an urgent care center. 

I live in a building with no elevator. I am sure it was quite a sight watching me struggling to stay upright and not vomit as I navigated myself down three flights of stairs while the world was whirling around my head. The spinning and nausea took my mind off of the pain in my neck and spine that I was experiencing during the ride to the urgent care facility. I mentioned to the doctor that  earlier in the week I thought I had an inner ear infection but now I was certain it was vertigo. I got a slow head turn and the wide-eyed look when I started listing my antibiotics. 

I am not sure if everyone reading this has had the pleasure of being “tested” for vertigo. Please keep in mind that in addition to the vertigo induced dizziness and nausea, I also had pulsing pain in my spine and neck from the Herx reaction. The doctor asked me to lay face up on the table with my neck hanging off the edge. She was supporting my neck with her hand and as I was looking at the spinning ceiling, without warning she twisted my aching neck so one of my cheeks was facing the floor, and the other was facing the ceiling. While she quickly turned my head back to the starting position so both eyes were looking up, another doctor, who I had not seen come in, grabbed me and moved me real fast into a seated position. I guess the dazed, pained expression on my face, coupled with the fact that I almost toppled backwards off the table made them declare that I had vertigo. The dizziness and nausea did not take my mind off of the spine and neck pain on the ride home. Somewhere between twisting my head and jerking me up towards the ceiling, the pain had intensified.

I have had two other vertigo infused Herx reactions since this first one that occurred in May. Each time the vertigo comes back it is more intense than the previous time. Lyme disease seems to have a never-ending bad of tricks. I guess I have no choice but to go along for the ride. 

And then one day my immune system woke up

Almost two months into my treatment I was excited to report to my doctor that I was already starting to feel better and asked the following question: “How much longer am I going to be on the antibiotics”? The reply,“six months to a year”, was spoken as increased dosages of my antibiotics were being scribbled on a prescription pad for me. On that cool crisp January day when I left the office I was thinking to myself, maybe they like to over-estimate the length of treatment time, six months to a year seems like an awfully long time. For a couple of days after that appointment I was feeling pretty down about the possibility of being on medication for a whole year, and then I was introduced to the Jarisch-Herxheimer Reaction. 

Early one morning I awoke shivering and lying in a puddle of sweat while experiencing some of the most intense pain in my lower back and legs that I had ever felt in my life. It wasn’t the fiery nerve sensation that I had grown somewhat accustomed too since the summer; it was a pulsing pain like somebody was stabbing me in my lower back. The pain was darting down my legs to my feet. My legs were cramping on and off throughout the day because it was impossible to relax them. There was not much I could do to relieve my discomfort so I just laid in bed, sometimes curled up in a ball crying and other times propped up against my pillows. As the pulsing pain started to subside, a cold, aching feeling started to creep into my joints. It was not the usual joint aches I experience from the Lyme disease. It was a sharp, painful feeling like jagged cubes of ice were scraping along the inside of my body. After a day of lying in bed thinking I was going to die, and then half a day of lying in bed feeling like a glacier was invading my joints, I was anxiously waiting for Monday morning to arrive so I could call my doctor.

Jarisch-Herxheimer Reaction, commonly referred to as a Herx reaction, occurs because the Lyme bacteria, under attack from the antibiotics, start to break up and die, releasing toxins and other harmful debris as they do so. This, in turn, causes the body’s immune system to temporarily go into overdrive in order to cope with the abrupt deluge of toxins and debris. A herx reaction can last from a few days to two weeks or more, depending on how disseminated the bacteria is in the body.  During this time, in addition to the temporary worsening of previous Lyme symptoms, one may also experience chills, fevers, headache, nausea, hives, rash and even a drop in blood pressure levels. In some patients the Herx reaction occur only once or twice (if at all) and with others continue throughout the course of treatment, usually lessening in severity.

Previously while discussing Lyme disease and treatment I mentioned that Lyme disease is known as the great imitator because the symptoms of the disease can mirror other ailments and go undetected. The bacteria can also trick your immune system into thinking they are not intruders, so your body will not produce the antibodies to fight it. During the first two months of my treatment many of my symptoms started to subside which led to some other issues, but looking at the big picture, I was starting to feel better (or so I thought). As the feeling in my feet came back, I realized the fiery/burning sensation that had been plaguing my legs, was actually in my feet too. When the feeling in my hands came back, I realized how stiff and achy they were; typing and picking things up became very bothersome.  My cognitive function started to improve; no downside to that one. The stiffness/inflammation in my shoulders that had been diagnosed as chronic tendonitis years earlier, started to decrease, and with that I gained a newfound flexibility that allowed me to execute yoga poses that I had never been able to achieve due to lack of flexibility and stiffness. As you can see, for the most part, my initial response to treatment was pretty positive but my immune system had yet to join in the fight against Lyme disease. 

I am now almost a year into my treatment, and am still experiencing Herx reactions. Some of my symptoms have disappeared, some have gotten worse,  and some new ones have arisen. The herx reaction doesn’t create new inflammation because it can't make bacteria appear where there weren't any bacteria before. When patients experience new symptoms they haven't had before, it's probably because the treatment is exposing more bacteria. Without the treatment, these hidden bacteria would not remain hidden forever. Eventually they would multiply to the point where they reveal themselves in new symptoms.

There are varying degrees of intensity in regards to the Herx reactions I have experienced ranging from mild to excruciating. I can go for months at a time without having one, and then an antibiotic change or I, pushing myself to do too much, will trigger a reaction. On the mild days I can get out of bed and go to work as I experience an increase of aches and pains in my joints.  By the end of the day I am exhausted and the brain fog sets in. On the more intense days I can’t get out of bed and just have to ride out the pain with a healthy dose of crying and occasional sleep. No matter the intensity or the length of the Herx reaction, it is always followed by a half to full day of the cold aching feeling creeping into the joints of whatever part of my body was affected by the Herx reaction. 

Much like the debates surrounding whether Lyme disease is chronic, and how it should be treated, there is also a debate about Herx reactions. Some people believe that severe Herx reactions are a sign of a poor treatment plan because Herxing greatly increases the toxic load, and others think it is a necessary for your immune system to react to the toxins that are released when large amounts of pathogens are being killed off and the body does not eliminate the toxins quickly enough.

If you have finished reading this post and are feeling like you want more details about what can occur during a Herx reaction, you’re in luck. Next time I plan to discuss, in great detail, the two most excruciating Herx reactions I have experienced to date. 

Get Your Cake, Even If You Can’t Eat It!

With a milestone birthday on the way, months of deteriorating health finally explained, a lifestyle change in the early stages of being implemented, insomnia, and a lot of uncertainty/anxiety, what would you do?

If you answered throw yourself a house warming/35^th birthday party and bake lots of delicious treats that you were recently told not to eat, than you are correct!

I love winter. January is my favorite month; coincidentally my birthday is in January. As the years go by and more and more of my friends shun birthdays and complain about getting older, I have taken the opposite approach. I believe that your birthday is a day to celebrate yourself, and it should be done with a lot of enthusiasm. January 15, 2012 was a fantastic day. I didn’t let Lyme disease dampen my birthday spirit.

I enlisted the help of two friends, Rachael and Miss S, to help plan and execute my party. Even though they thought it was a bizarre idea for me to make all sorts of sugary treats that I couldn’t eat, they went along with my plan to bake every single dessert I planned on having for my party from scratch. While I was preoccupied with baking, they were making sure that all of the finger food (hot and cold), drinks, utensils, etc were purchased and ready to go by the time the party started (you know all of the logistical stuff that usually the hostess would be worried about).

I know this is going to sound funny since I planned my own party, but my birthday was full of surprises. Not just for me, but for my guests too. I’ve been living in Washington DC for almost 18 years and I have met a lot of people. I don’t see everyone all of the time, but I invite everyone to my birthday celebrations. The first surprise came in the form of the fact that I had bought a condo at the end of August. Quite a few people didn’t know I had moved and were caught off guard with the all encompassing housewarming/birthday event they were invited to.  Besides a nice photo collection of my teddy bear doing various things around my new condo that was posted on FB, I don’t think I sent out any official new home announcement. (If I did, I accidentally left a lot of people off of it). The second surprise came in the form of me neglecting to tell the masses I was sick. Even those that knew about the Lyme disease, were not necessarily up to date on my food and drink restrictions. When you’re preoccupied with health issues and are accidentally putting toilet paper in your fridge when unpacking your groceries, you may forget to share major details about your life with some/most of your friends. Just in case you were wondering, chilled toilet paper is delightful. 

For about eight hours during my party, the logistics crew manned the stove and the door buzzer; they made sure all of the finger foods were constantly replenished and that all of the guests were let into the building upon their arrival. It was an open-house so there weren’t too many people jammed into my place at one time. Meanwhile, I happily bounced around and chatted with everyone while snacking on my private stash of Lyme-disease friendly food. 

My guests, many of whom arrived with wine and liquor; the perfect housewarming/birthday party gift, had a lot of questions for me about Lyme disease once the news began to spread. This is where that second surprise came into play. Many of my friends expressed concern upon hearing about my health issue, and were a bit perplexed as to why I had not mentioned I was sick and not allowed to drink, thereby rendering their gifts useless. Allow me to explain the awesomeness that is having a fully stocked liquor cabinet when you cannot drink. For nine months, until my supply recently ran out, I was handing out alcohol like it was free to all of my friends at various events. Everyone who got the gift of liquor or wine from me was impressed with my exquisite taste. It couldn’t have worked out better if I had planned it.

The last surprise came in the form of this Costco cake that Rachael and Miss S presented me with: 

And just like that, my clean eating (which at this point had been flawless for about a month and a half) went out the window. How could I not laugh and then have a tiny piece of cake? I probably ended up having five or six tiny pieces of cake and a Coors Light to wash it all down. 

My birthday was on a Sunday; by Tuesday morning I could barely lift my head off of my pillow. My whole body ached and I felt really ill. The combination of the cake and beer turned into my first lesson regarding the effects of what the food I was told not to eat would do to my body if consumed.

Have I eaten cake since then?

Does Key Lime Pie count as cake?

I'm Gonna Need A Bigger Pill Box

I can still remember when taking my One-A-Day Multivitamin felt like a huge burden that totally ruined the flow of my morning. For weeks, often months at a time, I would forget/ignore my vitamin and then I would go on a kick of taking it religiously until I would run out and then forget to buy more at the store.  I am sure all of you can relate to this drill. Now my mornings and evenings look like this…

 I miss the Multi.

I am going to assume that this photo has raised a few eyebrows and questions. Lucky for you I have set up a list of FAQs about my Lyme disease medication.

FAQs about Julie’s Lyme disease medication

1.       How long have you been on this medication?  November 25^th will be a year since I have been on the antibiotic/supplement combination. 

2.       How many pills are you taking on a daily basis, and why?

a.       I am currently on six antibiotics and 16 supplements, some twice daily and some daily. The dosages and frequency change often in an effort to outsmart the enemy.  Throughout the course of my treatment I have been on nine different antibiotics and at one point I was taking 21 supplements.

b.      The supplements offer support to my immune system, adrenal glands, liver  and everything between, as well as strengthen my body's ability to repair itself from the long-term problems associated with chronic Lyme disease.

3.       How much damage is all of this medication doing to your organs? I get blood work done every 8-10 weeks to monitor my liver and kidney function as well as other random tests. So far, knock on wood, no issues. 

4.       Are you experiencing any side effects from all of the medication?

a.       After 9.5 months of treatment my stomach started showing signs of distress. Some days are worse than others. Quite frankly I am surprised my stomach held out for so long. (Of course I have a supplement I am currently taking to help my stomach).

b.      Multiple antibiotics mixed with a dairy-free diet have led to the dreaded yeast issue. For the times when my daily dosages of probiotics are not enough, I have a prescription antibiotic to add to the mix.

c.       I started taking an antibiotic this past June which is primarily used to treat tuberculosis and it has turned my urine a very vibrant orange/red color. 

d.      The antibiotics are staining my teeth.

e.       I have a metallic taste in my mouth 

f.       There is one more side effect that was so grand, it will be showcased in its own post at a later date.

5.       When will you be finished with your treatment? As long as I am still exhibiting symptoms, I will be taking my antibiotics and supplements. My diet, which I discussed previously, along with yoga and acupuncture are key components to my treatment and will also be part of my post-antibiotic maintenance.

6.       Is this a normal chronic Lyme disease treatment? There is no cut and dry answer to this question so here is a multi-paragraph response. 

Previously I discussed the on-going chronic Lyme disease, testing and treatment debates; now it is time to discuss Lyme Literate Doctors (LLMD).  Many patient advocate groups in the Lyme community recommend seeking out physicians with specific experience treating the disease due to the fact that symptoms may mimic other illnesses and the standard blood test may produce false negatives.  A physician with the expertise to consider clinical symptoms in addition to blood tests may be preferable to one who relies solely on blood results. Many LLMDs will treat suspected chronic Lyme cases with antibiotics even in the absence of the early symptoms the CDC requires and will track a patient’s symptomatic response to antibiotics known to mitigate the disease. Long-term treatment with higher doses of antibiotics is the norm while getting treated for chronic Lyme by an LLMD. 

Due to the political controversy and legal challenges facing Lyme doctors, most of them prefer to keep a low profile, and for this reason can be difficult to find. Most accept new patients only by referral from one of the Lyme disease patient support associations or from other Lyme patients.

Early December 2011 I returned to the LLMD’s office to discuss the results of my blood work from a few weeks prior, and I learned that in addition to being treated for Lyme disease I was also going to begin treatment for three co-infections; two that I tested positive for and one that I tested negative for, but was exhibiting all the tell-tale symptoms of.

So back to that last question: Is this a normal chronic Lyme disease treatment? It is a treatment that my body is responding positively to while showing signs of improvement. Before visiting this doctor the only tickborne disease I had ever known about was Lyme disease, and now I am being treated for three additional ones. It has been eye opening to say the least. Since this time last year my overall health has improved and a handful of my original symptoms are gone. It has been a slow moving recovery and I still have a long way to go. 

Now here's a question for you. How much of my treatment do you think is covered by insurance?

Sometimes the Diagnosis is Half the Battle

It is universally agreed upon that the sooner a diagnosis can be made from the time of the initial infection with Lyme disease, the better the chance of recovery. Accurately diagnosing the disease is not always an easy task since it manifests itself in a variety of ways. Research done by the International Lyme and Associated Diseases Society (ILADS) indicates that only 50-60% of patients recall a tick bite. Deer ticks are tiny and not easy to spot even when they are attached to you, and their bites are painless. The only distinctive sign unique to Lyme disease, the Erythema Migrans (EM) rash, which looks like a bullseye, is reported in only 35-60% of patients. Joint swelling typically, occurs in only 20-30% of patients. ILADS also state that given the prevalent use of over-the-counter anti-inflammatory medications such as Ibuprofen, the joint inflammation is often masked. 

The Lyme disease bacterium is difficult to find in laboratory tests of body tissues or fluids, therefore most health care providers look for evidence of antibodies against B. burgdorferi in the blood to confirm the bacterium’s role as the cause of symptoms. Take a look at some facts from various websites about Lyme disease testing:

• In the first few weeks following infection, antibody tests are not reliable because your immune system has not produced enough antibodies to be detected.
• Antibiotics given early during infection also may prevent antibodies from reaching detectable levels, even though Lyme disease bacteria are causing your symptoms.
• It may take up to 2 months after becoming infected before antibodies can be detected in a blood test. Once formed, antibodies usually stay in your system for many years, even after successful treatment of the disease. Finding antibodies to the Lyme disease bacteria does not tell whether you were infected recently or sometime in the past.
•  We have no way of proving that Lyme disease has been fully treated. Antibody tests can remain positive for many months after the organisms have been eradicated. Clinical symptoms may persist because the bacteria live in the small blood vessels that supply nerves and other tissues. If those blood vessels are blocked by the inflammation, patients can continue to experience symptoms long after the last organism has died.
• "The commercial testing that's available is, in a word, terrible. It has coin toss sensitivity, which means if you flip a coin you get the same results as doing a commercial test," says Dr. Raphael Stricker, former ILADS president, who treats Lyme patients at his clinic in San Francisco.

The two most popular tests used to detect Lyme infections; Western Blot analysis and Enzyme-linked immunosorbent assay (ELISA) both test for antibodies and are notoriously inaccurate. They often fail to indicate Lyme when it is present in the body, with up to one third of cases of the infection being missed due to a high rate of “false negative” results. Patients can take a Lyme disease test one week and get a positive result, and take the same test two weeks later and result in a negative. The confusion is due to the nature of the Lyme bacteria, which is highly adaptive and bent on survival within a threatening environment. If a person does not have a diagnosed EM rash, there is a good possibility that the Lyme diagnosis could be missed. Consequently, those patients can become chronically ill with Lyme disease.

This muddled picture has one more layer; co-infections. In my last post I mentioned that there are more than a dozen tick borne diseases recognized in the United States. The standard Lyme disease tests only look for evidence of antibodies against B. burgdorferi. The tests for other tick borne illnesses must specifically be requested by a physician based upon the symptoms their patients are exhibiting. 

In my last two posts, I took a step back from my personal experience and laid out facts that anybody doing a search about Lyme disease, co-infections and testing could come across. As you can see, there is a lot of controversy surrounding Lyme disease and treatment. In an earlier post titled “A Clean Bill of Health” I was told I was healthy since my tests came back negative, even though I was 100% sure I had Lyme disease (again) and had text book symptoms. No further blood work was ordered and I couldn’t even get the physician to call me back for further discussion. I had to seek out a Lyme literate doctor (LLMD) in order to move forward and get treated. Talk about opening up another can of controversy. More on that next time! 

Lyme Disease at-a-Glance

There is no easy way to explain Lyme disease which is why I haven’t done it yet. 

What is Lyme Disease? 

Lyme disease (LD) is an infection caused by Borrelia burgdorferi, a type of bacterium called a spirochete (pronounced spy-ro-keet) that is carried by the black-legged tick (deer tick). The ticks pick up the bacteria when they bite mice or deer that are infected with LD. An infected tick can transmit the spirochete to the humans and animals it bites. Untreated, the bacterium travels through the bloodstream, establishes itself in various body tissues, and can cause a number of symptoms, some of which are severe. Lyme disease manifests itself as a multisystem inflammatory disease that affects the skin in its early, localized stage, and spreads to the joints and nervous system in its later, disseminated stages. 

Treatment: The key to a successful treatment is early detection.

·         Oral antibiotics are the standard treatment for early-stage Lyme disease. Depending on age and other factors a 14-21 day course of Doxycycline, Amoxicillin or Cefuroxime is usually recommended. Some studies suggest that 10-14 days of treatment are equally effective.

·         If the disease involves the central nervous system, the doctor may recommend treatment with an intravenous antibiotic for 14 to 28 days.

·         After treatment, a small number of people still experience some symptoms, such as muscle aches and fatigue. The cause of these continuing symptoms is unknown, and treating with more antibiotics doesn't help.

What is Chronic Lyme Disease? 

There’s a deep division in the medical community over whether there is such a thing as “chronic Lyme disease,” and there’s ongoing debate over how to help people who suffer from long-term effects of Lyme.

CDC website: Approximately 10 to 20% of patients treated for Lyme disease with a recommended 2-4 week course of antibiotics will have lingering symptoms of fatigue, pain, or joint and muscle aches. In some cases, these can last for more than 6 months. Although often called "chronic Lyme disease," this condition is properly known as "Post-treatment Lyme disease Syndrome" (PTLDS).The exact cause of PTLDS is not yet known. Most medical experts believe that the lingering symptoms are the result of residual damage to tissues and the immune system that occurred during the infection.

International Lyme and Associated Disease Society website: Chronic Lyme disease patients may face a long hard fight to wellness. People with chronic Lyme can have many debilitating symptoms, including severe fatigue, anxiety, headaches, and joint pain. Without proper treatment, chronic Lyme patients have a poorer quality of life than patients with diabetes or a heart condition. A significant number of people who contract Lyme disease are misdiagnosed during the early stages, leading to a chronic form of the disease which can prove even more difficult to diagnose and treat. Lyme disease is often referred to as the "great imitator" because it mimics other conditions, often causing patients to suffer a complicated maze of doctors in search of appropriate treatment.

NIH website: The term “chronic Lyme disease” (CLD) is very confusing, as it has been used to describe people with different illnesses. While the term is sometimes used to describe illness in patients with Lyme disease, in many occasions it has been used to describe symptoms in people who have no evidence of a current or past infection with B. burgdorferi. In other cases, “CLD” is used in patients who have non-specific symptoms (like fatigue and pain) after treatment for Lyme disease, but who have no evidence of active infection with B. burgdorferi. Physicians sometimes describe these patients as having post-Lyme disease syndrome (PLDS).

Treatment: The treatment for chronic Lyme disease is just as controversial as the diagnosis. It varies from patient-to-patient and I will go more in-depth about my treatment as this story continues to unfold. 

What are Co-infections?

Scientists recognize more than a dozen tickborne diseases in the United States. One tick may carry more than one disease and sometimes people get more than one co-infection from the bite of a single tick. Coinfection generally results in more severe illness, more symptoms, and a longer recovery.  Many Lyme patients are also infected with co-infections.

Treatment: The treatments vary since not all co-infections respond to the same antibiotics. In some cases co-infections are not diagnosed or treated.

This is just the tip of the iceberg in terms of what you may find while researching Lyme disease. If you are reading this and thinking that part of the picture is still missing, you are correct. I am saving the discussion about Lyme disease testing for the next post because it is just as convoluted as trying to define Lyme disease and deserves an equal amount of attention.