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?