Asymmetry, Digestive Disorder, and Rock & Roll

A lot has happened since I last wrote in May. First I am going to share a smorgasbord of experiences that could have spawned individual posts if I had been keeping up with my writing and then... well I haven't thought that far in advance yet.

This past April I was struggling to hold bridge pose in my yoga class when I suddenly realized that half of my rib cage appeared to be missing.
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In early June I wore dresses to work every day for a week and received many compliments. I neglected to mention that the reason I wore the dresses was because I was bloated and couldn't button my pants since I hadn't had a bowel movement in about 4 weeks.
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Have you ever injured your coccyx? Right about now you are probably wondering how a girl with Lyme disease, who spends a lot of her time resting and not doing much physical activity that would put her coccyx in danger, ended up with an injured coccyx. You may also be wondering what the heck a coccyx is.
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At the end of June I took a break from DC and work and went to Cape Cod to visit my family. Please take a look to the left and feast your eyes upon the mega pill organizer that I purchased that wasn't even large enough to house all of the antibiotics and supplements I had to bring with me to ensure I kept up with my treatment for 12 days. Please don't let your jealousy consume you.
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This past Sunday I was on my feet all day enjoying all there is to enjoy at the Mayhem Festival (heavy metal music event). I went to work on Monday and that night I went to see a Soundgarden and Nine Inch Nails show and got home at 1 am Tuesday morning. Later that same morning I was sending a message to a friend of mine letting her know I was really sore but surprisingly not tired at all when I realized I was drooling all over my arm and my keyboard while sitting in front of my computer in my office.
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Before I go any further here is a diagram and description of bridge pose if you are not familiar with yoga.

Back to the rib cage...

There I was toward the end of my yoga class struggling to hold bridge pose (with zero flexibility in my lower back due to inflammation this pose is my enemy) when I realized the left side of my rib cage was jutting out really far and the right side of my rib cage looked like it was missing. I was alarmed yet strangely calm about the whole thing. And then I started laughing as I pictured Chris Rock asking for one rib in "I'm Gonna Git You Sucka". My mind works in mysterious ways.

Earlier that same week, I kept getting compliments on the asymmetrical neckline of the shirt I was wearing at work. I was perplexed, mainly because it was a scoop neck shirt, and not asymmetrical at all. One of my shoulders was much higher than the other, which caused my shirt to play visual tricks on people. My shoulder, combined with the rib cage led me to make an appointment with my Active Release Technique (ART) doctor. ART is a combination of myofascial tissue manipulation and chiropractic care. My thoracic spine was very inflamed and had twisted, taking my rib cage with it. Since April the inflammation has gone down a bit, but my rib cage is still listing to the left. The inflammation in my neck and shoulders is also an issue, which leaves my upper body in a state of constant crookedness. Luckily I get temporary relief and symmetry each time I get adjusted.

In addition to the limited flexibility and soreness in my lower back, I have been dealing with an injured coccyx for the past few months, which at times makes it unpleasant to sit. I had no idea what a coccyx was until I hurt mine, here is a description just in case you are not familiar with this body part either. Since I can't remember the last time I fell and landed on my butt, and haven't recently birthed a child, I most likely injured it doing yoga. Apparently certain yoga poses can knock it out of position. My coccyx is still slightly out of place due to the ebb and flow of inflammation I experience, but it certainly feels better than it did when I first noticed the issue.

Around the time that my newly injured coccyx was causing me a lot of pain and discomfort, I realized that I was having trouble going to the bathroom. At first I didn't think anything of it... I could go into a lot of detail here but I am going to keep the poop talk to a minimum. Long story short, I was so uncomfortable that not having to put extra pressure on that area was okay with me. Butt after a couple of weeks (pun intended) feeling majorly backed up and bloated was adding to my overall misery. Around three weeks into my being backed up I had to start wearing dresses to work because I couldn't button my pants. At the beginning of week 4 while at an appointment with my Lyme doctor he gave me some supplements that got everything moving again. RELIEF! Now for all of my dear friends who told me I didn't look bloated at all during this harrowing situation, I would like to share the following fact. On July 22nd I had an appointment with my doctor, and he asked me if I was maintaining my weight as I was stepping on to the scale and I said "I don't think I have lost any weight since my last appointment". He looked at the number on the scale and sighed and said "Julie, you are 7 pounds less than you were a few months ago". As it turns out, the last time I had been there was toward the end of the 4 week stretch when I was constipated and bloated and couldn't button my pants.

On June 23rd my parents celebrated their 40th wedding anniversary. On June 27th my sister, her boyfriend and I headed to Cape Cod to surprise them and take them out to dinner. And then on June 29th we surprised them again with a party at their house. In addition to having a lot of fun hanging out with family and friends, a few other great things happened during this trip. I didn't get vertigo from flying (first time I can say that since the Lyme treatment began), I went walking every day on the beach and while I was very sore and achy, I didn't have to take naps in the afternoon, and I was told that compared to last July I am like a totally different person (in a good way). I've got my fingers crossed that by next July when I go to visit my parents in Cape Cod I will not be lugging the mega pill organizer with me, that damn thing took up a lot of room in my suitcase, room that an extra pair of shoes could have comfortably occupied.

Shortly after the drooling episode at work this past Tuesday morning, I sat at my desk in a state of confusion trying to figure out why my breasts were suddenly feeling very tender. I kept thinking to myself, it's not that time of the month (girls you know what I am talking about) so why is this an issue? And then my mind wondered back to Sunday at Mayhem Festival and the pieces of the puzzle fell into place. Here is a mention from last year about what Mayhem Festival is in case you are not familiar with the event. Ice T and his band Body Count played at Mayhem this year, and Laikisha (my concert going partner in crime) and I positioned ourselves very close to the stage as evidenced by the picture of Ice T to the right. Being this close to the stage always involves getting jostled around by folks in the mosh pit while making sure body surfers don't land on your head. I got a good arm and pectoral workout "bench pressing" a variety of different sized people throughout the show, since they were literally dropping from the sky the whole time. As Tuesday wore on my chest and neck pain got worse and I became incredibly exhausted. My eyes were stinging and all they wanted to do was close while I struggled to stay awake and get work done. But it was all worth it. I had a blast and the fact I was able to go out two nights in a row and enjoy myself like that is some sort of milestone in my Lyme treatment. That's my story and I'm sticking to it.

I am now in my 33rd month of treatment. Physically I have a lot of issues that I am still trying to work through. Energy wise I am doing the best I have been doing since my Lyme journey began, and the same can be said for my mental state. I recently had a disagreement with my doctor regarding the direction of my treatment, and I have an appointment with a different Lyme doctor towards the end of August. While I am between doctors I am going to continue to over do it and enjoy my summer while sticking to my current Lyme protocol, because I know I am in for a bit of a rough road ahead with the new direction I want to go in. I shall discuss this all in more detail next time. I lost motivation to write for awhile because I felt like I was stuck in a Lyme rut, but things are changing and I am feeling optimistic.

Om Namo Bhagavaate Vasudevaaya

I am 100% certain that the word spiritual and my name have never been used in a sentence together.  That being said, you are probably wondering why the title of this post is a mantra of Krishna. Oh, you had no idea what that was until I just mentioned it? I must admit that I learned what it was about five minutes before I started writing this post, even though I chanted it repeatedly about two months ago with a group of people in a theater.  I also just learned that Krishna is the eighth incarnation of Lord Vishnu in Hinduism. Vishnu is the Supreme God of Vaishnavism, one of the three main sects of Hinduism... I could go on, but I know you are probably waiting with bated breath to find out what led a nonreligious girl to talk about spirituality, chanting and Krishna in her blog about Lyme disease.

About a year ago a friend of mine took a yoga teacher training class and told me that during a discussion about chanting the instructor mentioned that she had suffered for years with Lyme disease and Bartonella and credited the vibrations from chanting with helping her go into remission. When asked what my thoughts were regarding the claim made by the instructor I said something along the lines of  "it sounds weird but I will look into it".

"When you sing, you pray twice" - St. Augustine.

The quote from St. Augustine above that I kept reading in many articles about the health benefits of chanting is not what led me to try it out. Chanting is a centuries-old technique that connects humans with themselves, the universe, and Spirit. Chanting raises vibrations of the individual practicing and as a result, people who chant feel alive, peaceful, and centered. We all know that in order to attain good physical health and happiness, the body requires adequate exercise, proper diet, and rest. More importantly and more overlooked is the health of our inner self which also requires nourishment and attention. When we neglect our spiritual, inner self, we become imbalanced and negative in attitude and emotions.

I read about various studies done on chanting and here are just a few things that stood out in my mind:

• Chanting sounds have a therapeutic effect on the body. It soothes all our bodily systems and activates the body’s natural healing process.
• Chanting helps block the release of stress hormones and increases immune function.
• Chanting is an effective means of enhancing people’s moods in the immediate present, as well as over an extended period of time.
• Using chants as part of our exercise regimen, helps facilitate movement and flow of the body during exercise.

Around the time that I decided I was interested in exploring chanting, my yoga studio sent out information about the Grammy award nominated Krishna Das who was making a tour stop in DC in support of his new album. I purchased a ticket to the show. I told a few people about my plans and while nobody actually expressed the desire to join me, many wanted me to report back to them on my experience after the event. After work on March 26, 2014 I headed to the theater at the University of the District of Columbia for the show without having done any research on Krishna Das or chanting. I have since learned that Krishna Das is a U.S. vocalist known for his performances of Hindu devotional music known as kirtan. With eight albums released since 1996, he is perhaps the best known U.S. singer of kirtan-style music. He is also sometimes referred to as the "Rockstar of Yoga". Kirtan is call-and-response chanting which involves chanting hymns or mantras with the accompaniment of the harmonium, various percussion instruments, bass, and hand cymbals.

Upon my arrival at the venue I stood in line waiting for the doors to open with a group of the most friendly and relaxed people I have ever laid eyes upon anywhere in the Washington, DC area. It was the opposite of what it is like to stand in line waiting for the gates to open for Mayhem Fest. As we filed into the theater we were handed a chant sheet. There was a large advertisement off to the side of the stage for the Krishna Das satellite radio station that read: Music transporting listeners to a deeper place where they can quiet the mind and open the heart featuring Krishna Das and more (Channel 360 on Sirius radio in case you are interested). After reading the ad, and listening to the people around me discuss Krishna Das, Buddhists and chanting, I had a brief moment where I got a little sweaty and questioned why I thought coming to this event was a good idea. Perhaps it was like a mini-Buddhist panic attack. Shortly thereafter, Krishna Das (pictured above) walked on the stage, sat down, said a few words to the audience and began chanting. He would chant first, and then the audience would repeat what he said. He did not go in the order of the chant sheet so it was hard to follow since the chant sheet made as much sense as the title of this post. It literally would take me a few minutes to figure out what he was saying each time a new chant began. Everyone else around me seemed to know all of the mantras being spoken and were not having any issues with the response. At one point he started singing "Let It Be" by the Beatles and everyone joined in. It was a welcome change from mumbling my way through the evening.

The show was 3 hours long. Yes, 3 hours. You are probably wondering if I got bored. I didn't, but I think I took a little nap. Actually it may not have been a nap. Half way through the show for about 20 minutes I got really sleepy and closed my eyes. But I was still chanting, so I really wasn't asleep. Perhaps I was meditating. Krishna Das had a deep soothing voice and the chanting was kind of hypnotic. 

Toward the beginning of the evening, I spent a great deal of time studying the instrument that he was playing. It looked like an accordion with a keyboard attached to it (pictured to the right). One hand would move back and forth like it was strapped into an accordion while the other hand played the keyboard. I had never seen or heard anything like it. I eventually asked the lady sitting next to me what it was. The instrument is called a harmonium.

When I wasn't obsessing over the musical instrument or trying to figure out which response we were supposed to be calling back, I was studying the audience. The man sitting next to me was really in to it. He had his eyes closed for most of the time and was swaying to the music with his hand in the air. I really thought that at some point he was going to yell out "Can I get a witness?". I chose to stay seated the whole time but on numerous occasions during more upbeat chants many people in the audience were dancing in the aisles, and/or looking up towards the ceiling with their arms raised. I will admit that part of me wanted to laugh as I kept envisioning the scene from the "Blues Brothers" with James Brown and Jim Belushi in the church (if you're familiar with the movie feel free to chuckle since you are not in the theater right now chanting), but I refrained. People were really engaged and I enjoyed observing the crowd more than the participation part. I left the show with a smile on my face and the desire to continue to explore chanting. I was also starving, but that was because I didn't know how late I was going to be there. 

In what I am referring to as a windfall of chanting opportunities, I saw two notices about Kirtan call-and-response events at two different local Washington DC yoga studios, one in March and one in April. I signed up for both. Two nights after the Krishna Das concert, I found myself at the Flow Yoga studio listening to the Hanumen (pronounced “Ha-new-men”). This group of four men performed a mix of song and story and call-and-response chant in English and Sanskrit during their show. They mixed some American blues songs in with the music of India.  It was a more intimate setting then the concert at the theater. We all sat on the floor surrounding the Hanumen and their instruments. There were no chant sheets and I butchered all of the responses, but it was fun. A few times they encouraged us to stand up and dance during more upbeat songs, but for the most part we were seated. There were two women sitting next to each other off to my right side that were chanting in falsetto voices and they were very distracting. One of the women was doing a lot of hand gesturing and moving around while sitting on the floor. Once again, instead of concentrating on myself and my own experience I was observing the audience and trying not to giggle. I lost interest in the distractions for a period of time until I realized that one of the falsetto voices was suddenly coming from my left side and the other one had gone silent. I will never know what transpired between the dueling falsettos, and I am kind of sad about that. It must have been something good since one of the ladies got up and moved to the other side of the room, and the other one continued her hand gesturing and began chanting in a much lower and quieter voice. 

At the end of April I attended an event at Buddha B Yoga studio, with Wynne Paris and Gaura Vani. At the beginning of the evening Wynne Paris talked about Kirtan and I learned that the enlivening spiritual practice is an integral part of the tradition of devotional yoga called Bhakti yoga that originated in India many centuries ago. He also mentioned that it should be like a pentecostal revival for Buddhists so he wanted to see people really getting caught up in the spirit and energy of it all. His comment made me smile because I felt like my initial reaction to the audience at the Krishna Das concert was justified. The participants on this particular night were a lot more subdued than the ones I had encountered during my other two experiences, however, at one point we were all encouraged to form a conga line during one of the more upbeat songs and things got very lively. I had a great experience and was able to focus on myself because I didn't have any distractions. 

I have not been going to chanting with any regularity; that coupled with the fact I am easily distracted by people around me probably negates any of the health benefits that I have read about. I plan to dive deeper into chanting and seriously explore it since I found a Buddhist center near my condo which leads chanted meditations. I suspect that the chanting, in addition to my reiki and acupuncture regimen, will play a big part in my recovery.

Over the past few months as my energy has increased and I've been more upbeat, I have begun socializing a lot more. That being said, I often over do it on the weekends and find myself limping around my office during the week like I need a knee and hip replacement.

A few new issues recently cropped up but I am just going with the flow, and keeping my eye on the prize. What's the prize you ask? A full recovery. Currently, my mind and spirit are thriving and my body still has a lot of catching up to do. More on this next time. Till then, here is an article from 2008 about chanting in mainstream music for you to read.

A Quiet Mind

Today is May 5th. In years past I was a huge fan of celebrating Cinco de Mayo in the drunken, sloppy fashion that those of us in the United States think is the proper way to celebrate this Mexican national holiday. Who doesn't love chips, salsa and margaritas? When I left my office today I passed packed happy hours at various restaurants and went straight to my scheduled Reiki session. Most people will tell you that as you get older and more mature, you tend to party less. The fact that I chose to meditate after work tonight over heading out for a Mexican food feast doesn't have anything to do with maturity, it is strictly Lyme related!

Reiki is a Japanese technique for stress reduction and relaxation that also promotes healing. This healing technique is based on the principle that the therapist can channel energy into the patient by means of touch, to activate the natural healing processes of the patients body and restore physical and emotional well-being. In a standard treatment Reiki energy flows from the practitioners hands into the client. The client is usually laying on a massage table but treatments can also be given while the client is seated or even standing. The client remains fully clothed. The practitioner places her/his hands on or near the clients body in a series of hand positions. These include positions around the head and shoulders, the stomach, and feet. Other, more specific positions may be used based on the clients needs. Each position is held for three to ten minutes depending on how much Reiki the client needs at each position. The whole treatment usually lasts between 45 and 90 minutes.

In my last post, I mentioned the book "Why Can't I Get Better? Solving the Mystery of Lyme & Chronic Disease" by Richard I. Horowitz, MD. By the time I read about meditation in his book I had already gone to three sessions of Reiki per a friends suggestion. Over the years of talking with his patients, Dr. Horowitz has found that the pain and suffering associated with Lyme disease not only manifests as physical symptoms but also has a strong emotional component. He believes there are many health benefits of meditation and he encourages his patients to explore it in order to help teach the mind to be clear and relaxed. Being grounded in your body and aware of what you are experiencing, seeing, hearing, and so on can help you find peace in the midst of illness (I just summarized a chapter of a book here in a few sentences, but I am sure you get the picture).

I didn’t do any research about meditation or Reiki before I went to my first session. I wanted to go in there with an open mind about everything and not have any expectations. It is way to easy to read things like this, and have your mind made up about a new experience before you even try it. 

During my first session the Reiki Master explained Reiki and what she would be doing, and then I laid down on the massage table, closed my eyes and relaxed. For the majority of the time I listened to the sound machine (birds tweeting) and wondered what I was supposed to be thinking about. The only thing that really distracted me was my stomach and its never ending grumbling. The grumbling is a sign that the energy is flowing through your body. After my first session I was very relaxed and had one of the best nights sleep I've had in a long time. The next morning I woke up with boundless energy. It lasted for a whole week. People at work were telling me I was too cheerful during morning meetings and that I should cut back on my coffee. They looked less than thrilled when I informed them that I have been caffeine free for over two years. It really was the best week energy wise I have had since starting my Lyme disease treatment. While I haven't reached that same level of energy with my subsequent Reiki sessions (it probably has to do with all of my antibiotic changes and a few other issues that have recently presented themselves), I have been achieving great results and plan to continue doing it. In addition to leaving each appointment feeling relaxed and refreshed, and then benefiting from the renewed energy between sessions, here are a few interesting experiences I have had thus far:

• Tingling sensation in my hands and my feet like I get during my acupuncture treatments except this feeling of energy moving in my body is not caused by acupuncture needles
• One evening as I was laying on the massage table with my eyes closed wondering about whether or not I was thinking to much during Reiki, my body achieved a new level of relaxation and it felt like I melted into the table. My hands and feet became tingly and a sensation like a wave of water rushed from the top of my head all the way  through my feet taking my thoughts with it. I spent the remainder of the Reiki session trying to remember what I was thinking about before my thoughts got swept away through the bottoms of my feet
• Extreme warmth in my hands and feet/cold hands and feet 
• The feeling of pins and needles in my arms and legs
• Restlessness which causes me to move around a lot on the table 
• The feeling of electricity shooting through my arms (a very pleasant feeling, not high voltage)
• The room has gotten lighter and darker like a lamp is swinging over head casting shadows around me, but there is no swinging lamp in the room

I have been doing Reiki for about two and a half months now. I still don't know what I am supposed to be thinking about or focusing on, but it all seems to be working for me. I always leave feeling incredibly relaxed and happy, and I have been able to be a lot more social with my increased energy.... but that is not to say that I am not still experiencing fatigue and exhaustion. It is a weird phenomenon. My energy level has increased but my body hasn't caught up to it yet.

I inadvertently meditated in my condo a few weeks ago. I was laying on my couch attempting to take a nap during the day and found myself getting annoyed with the amount of noise my upstairs neighbors were making. I told myself to relax and concentrate on my breathing. And then I drifted off into a very peaceful state. I was still aware of the noise, so I know I wasn't sleeping. I felt very calm and my body began to feel really light and free. And then my feet and hands started to tingle and I leapt off the couch full of excitement. I landed on my feet and said out loud to nobody, "Oh wow! I think I was meditating". And then I followed that up with "I think this is the opposite of what I was supposed to do".

As you can see I am still learning! With zero research done on the subject so far, I feel like great things are on the horizon in terms of meditating and my health since I have been responding so well to the Reiki.

Pushing the Energy Envelope

"There is a view among exercise psychologists known as the “energy envelope theory”. Simply stated, each individual has an amount of energy perceived to be available to him/her at any point in time, and if the individual expends only as much energy as they perceive they have available, they will remain in their energy envelope. If they expend more energy then they perceive they have available, then overexertion can lead to worsening symptoms".

I recently read the book “Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease” by Richard I. Horowitz, MD. The author is a board-certified MD specializing in Internal Medicine. He and his wife founded the Hudson Valley Healing Arts Center in Hyde Park, New York, which has treated over 12,000 patients for tick-borne diseases over the past twenty-six years. Dr. Horowitz is known for his pioneering work with Lyme disease and is recognized to be one of the country's foremost experts on chronic illness.

There are many instances throughout this blog where I have admitted that I tend to over do it on the days I am feeling well, which leads to exhaustion, heightened symptoms and me having to sleep a lot. My doctor must be tired of constantly having to remind  me that I don't have any energy reserves and even if I am feeling well I still need to rest. Coincidentally within the same paragraph I quoted above from the book, Dr. Horowitz explains how Lyme patients ignore their basic body signals when they start having good days and then over do it and crash and end up in bed for a couple of days. I am diligently working on slowing myself down and building up stamina while staying within my energy reserve. However, I have spent many years overexerting myself in all aspects of life, so this part of my Lyme recovery is still a major work in progress. 

The book was eye opening to say the least. I learned a lot about Lyme disease and other chronic illnesses and while I may have even more concern now about my health than I did before I picked up the book (I didn't even know that was possible), I am glad that I read it. Environmental toxins, hormone imbalances and sleep patterns are just a few things that can affect Lyme treatment. Viral infections that a Lyme patient doesn't realize they are infected with can also interfere with their treatment, i.e.: Epstein-Barr and West Nile. Lyme Disease can cause autoimmune symptoms even though it is not an autoimmune disease which accounts for the high rate of misdiagnosis. The book is 457 pages so what I mentioned in this brief summary is literally just the tip of the iceberg. The one thing about the book that really bothered me is that Dr. Horowitz made no mention of how costly it is to get treated for Lyme disease and he made it sound like someone could take the information from his book and walk into their physicians office and it would be very easy for them to get proper treatment for Lyme disease. As we all know from reading my blog, that is not the case. But I am not a book critic, so let me get back to talking about me.

Why can't I get better?

This is a good question and not one that is easily answered according to Dr. Horowitz's book. Leading up to Christmas I wrote about the horrible headaches that I was experiencing from what I assumed was consumption of a lot of holiday treats filled with processed sugar. While the lapse in my anti-inflammatory diet played a part in my discomfort the headaches were actually caused by a herx reaction. This herx reaction was quite different than the herx reactions I have experienced thus far in my treatment, so I thought I was just having bad headaches. Click here and here if you need a refresher on herx reactions.

This herx reaction played out over a week and a half. Towards the end of the work day a burning sensation would invade my shoulders, neck and head. The burning sensation would get more intense as the night wore on and pain would start creeping into my neck. I would climb into bed around 7:30 PM because I couldn't function, but would lie there until the early hours of the morning not being able to sleep due to extreme discomfort. I couldn't get comfortable. It hurt to move and it hurt to lie still. In addition to the burning it also felt like someone was trying to cut their way out of my neck from the inside with a rusty sharp instrument. On a few occasions my brain also felt like it was trying to climb out of my head. In the morning when I would get out of bed for work I had a lot of achiness in my neck and shoulders but no sign of the burning and pain. As the week wore on and the pain would come back at night, the burning sensation crept out of my shoulders and neck and was all concentrated in my head. A couple of days after Christmas the pain started radiating into my jaw and it was so intense it felt like all of my teeth were going to fall out. As the night wore on the pain shifted to one tooth and it felt like it had a heartbeat. The most bizarre thing about the tooth pain was that it was in a tooth of mine that I previously had a root canal in so technically it should feel no pain. About eight days into this herx reaction I realized when I was lying in bed that I had an accelerated heart rate. You are probably wondering why it took me so long to realize that. All I can say is that I was dealing with an incredible amount of pain and my heart didn't hurt so I wasn't paying attention to it. After a call to my doctor about my intense burning headaches, tooth/jaw pain and accelerated heart rate I was advised to immediately stop taking one of my antibiotics that I have been on long term for Bartonella and to start taking a different one. In my post from February I discussed how once I was off the antibiotic that caused the herx reaction, I experienced many great things. My brain fog lifted, the night sweats and hot flashes ceased to exist, I wasn't waking up with cramps in my legs in the middle of the night and I no longer felt light-headed when standing up from a seated position. On the flip-side I mentioned that after being off the antibiotic I was having trouble concentrating and I started to experience really bad acne on my face, neck, chest and back.

At the end of February during a doctor's appointment I was telling him about all of the positive things that I experienced with the medication change and he seemed thrilled until I mentioned the horrible acne. I said to him "Now I don't want you to think I am exaggerating about this. I know my face and neck don't look so bad right now, but my back is really bad and it is painful and sometimes it feels warm to the touch". You know it is bad when you lift the bottom of your shirt up to show the doctor your lower back and there is a moment of silence followed by the sound of air being sucked through teeth just as he grabs both sides of your shirt and pulls it back down. There are a few "lucky" folks that got to catch a glimpse of the horror show on my back and ... well... lets say that facial expressions are worth a thousand words! The acne is related to a Bartonella flare up and since the antibiotic I was switched to after being removed from the one that caused the herx reaction clearly wasn't doing a good job of keeping the Bartonella under control, I was told to go back to the other antibiotic but to only take half of the dosage. I was on the half dose for about 4 weeks when I experienced a flare up of inflammation in my neck and shoulders causing me to be extra achy and stiff. The increased inflammation coupled with the fact my acne was still painful and not going away led my doctor to put me back on the full dose of the antibiotic. While the acne looks better than it did a month ago, it is still there and I am now experiencing night sweats and leg cramps again.

Lately I feel like a dog who is erratically chasing its tail. I am stuck in a never ending loop of medication adjustments and symptoms that ebb and flow. While my doctor is tinkering with my medication I have begun a journey down an alternative path. In the coming weeks I look forward to sharing my new experiences with you as I continue my quest to beat my Lyme disease into remission.

The 2014 Winter Olympics

"Hold this for a moment" said the older gentleman as he handed his book to Patrick on the sidewalk. He turned toward me with his hands raised over his head and said "Listen, I am not gonna try to steal your car. I am just going to help you get it off this ice". I smiled and said "Thanks. Go for it", and in my head I thought to myself, even if you wanted to try and drive away, you wouldn't be able to. It's not moving anywhere. The door slammed, and moments later the sound of tires spinning on ice echoed down the street. He stepped back onto the pavement, closed the door and said "The car is stuck". He took his book back from Patrick, wished us luck and walked off down the street.

Twenty five minutes earlier I had misjudged the ground clearance of my car in an attempt to drive over a block of ice/snow that was between me and a parking space that was partially dug out on my street (the joys of city living in the winter).  At first glance it looked like my front tires spinning hopelessly on the ice were the issue. A quick look under the car told us differently. The front axle was wedged in an "iceberg" and my tires were actually lifted off the ground, and resting on at least an inch of ice. For a few minutes Rachael and I stood on the street laughing about my predicament. It was around that moment when Patrick arrived. His lunch plans with Rachael were put on hold as he was immediately put to work.

Rachael, Patrick and I took turns chipping away at the ice with a plastic shovel for nearly a half an hour before the man with the book approached us and offered his help. While I had already tried to put the car into reverse to back off the ice, he insisted I try again. When he saw both front tires spinning on the ice he suggested putting my floor mats behind the tires so I could gain traction. We tried to explain to him that the tires weren't the main issue, but he did not listen. After the floor mat experiment failed with me behind the wheel, he decided to try moving my car himself. I don't know if he thought I didn't know how to put the car in reverse and step on the gas or what, but the line about not trying to steal my car was amusing.

About five minutes after the man with the book gave up, a cab driver pulled over and grabbed some type of metal ice chipper/hoe out of his trunk and told us to dig the tire out. Once again, nobody wanted to listen to the people who had actually looked under the car. We explained that the tire wasn't the issue, but he insisted. Once one tire was free, he grabbed his tool, put it in the trunk, told us we would be good to go, and drove off. I got in my car, put it in reverse, and stepped on the gas. One tire was still spinning on ice, and the other was just spinning in the air because as I previously mentioned my car was perched on a block of ice. As you can see in the picture to the left, my tire wasn't even touching the pavement after we dug the snow out from under it.

The cab driver was a huge help to us though because suddenly Patrick remembered the metal shovel he had for gardening and he went home (about 4 blocks from my place) and returned with it. We all took turns carefully chipping away at the ice, without damaging the undercarriage of my car and eventually freed my car from the clutches of the ice. The metal shovel was more efficient than the plastic one that I found in the storage area of my building. It took us about an hour and a half to free my car. It was 27 degrees out, and nobody was wearing gloves. We made some jokes about what appeared to be bloody snow under my car once it had been moved. It wasn't until we were almost inside when I realized that both Patrick and my knuckles were the source of the bloody snow.

At this point you are probably wondering what this has to do with the 2014 Olympics. I can answer that for you. It has nothing to do with the Olympics. The Olympics ended about two weeks ago and the last time I checked chipping away at blocks of ice under a car, and exfoliating your numb hands on pavement were not on the list of events.

Last year I was so miserable in the winter that I couldn't even stand to be outside. You can refresh your memory about that here and here. This year while the cold damp weather still caused increased joint and muscular issues, I was in a much better mood and a lot more active. After being outside in the freezing weather shoveling/picking away at ice it took me over a week to return to my regular level of discomfort. On one hand I am thrilled to report the improvement in my mood and level of activity over the past year, but on the other hand it is very discouraging because I want nothing more than to feel better and to be able to start training for triathlons again and I am a long way off from being able to do that seeing how I just mentioned that it took me over a week to return to my regular level of discomfort after shoveling.

On February 20th, 2014 Angeli VanLaanen competed in the half pipe at the Sochi Olympics. Who is Angeli VanLaanen you ask? Truth be told, I had no idea who she was until about a month and a half ago. She is an extremely talented freeskier who in 2009 had to take 3 years off from skiing in the prime of her career while she battled Lyme disease. Click here and here for articles about Angeli. And when you have a spare half an hour, check out this video about her Lyme journey.

Angeli's Lyme disease has been in remission for two years. She was able to overcome the mental and physical beating that Lyme disease unleashes on your being and make it back to a level of competition that enabled her to qualify to represent the USA at the Olympics. She made it all the way to the finals in the half pipe and while she didn't finish with enough points for a medal, she is a winner in my book. Her story is very inspiring to me. I know what she had to push through during her Lyme treatment, and I also have an idea about the kind of changes she had to make in her everyday life to get to the point where her body could handle this sort of competition again. She is also very involved in Lyme advocacy work and being in the spotlight at the Olympics gave her a great opportunity to share her story while educating the masses about Lyme disease. I look forward to hearing more great things about her in the future.

Clear As Mud

I am back from a writing hiatus that I didn’t intend to take and I think I have some good news to share. Good news in the world of Lyme disease may not be what the rest of the world would define as good news. I know this doesn’t sound promising, but I swear I think I have good news. Well sort of. Perhaps I should say I have a small percentage of good news. 

Shortly after Christmas I was advised by my doctor to discontinue one of the antibiotics I had been taking for over a year after calling him to describe the headaches, jaw pain, toothaches and accelerated heartbeat that I had been experiencing for over a week. In my last post I mentioned that I was making poor food choices leading up to the holidays and was having issues with head, neck and shoulder aches. It turns out while the sugar consumption played a part in my discomfort, something else was brewing. While I cannot explain exactly what that "something else" was, I promise to give a full update after my next appointment with my doctor. In the meantime we can’t even give a cheer for me being on fewer antibiotics because I was given another one to replace the one I was taken off of. 

That was not the good news I teased at the beginning of this post. 

Ever since I stopped taking the antibiotic I have had acne issues. In the whole scheme of things acne is not nearly as big of a deal as an accelerated heart rate but I am going to take a second to bitch about it anyway because I don’t need horrible acne on my face, neck, back and stomach to remind me how crappy this whole Lyme disease situation is. Yes, I said my stomach. Ugh. However, I am glad to report that during the past two weeks it has started to get better so there is hope for my skin! 

Once again, not the good news. 

A handful of positive things have occurred since I stopped taking the antibiotic. 

For months I was frequently waking up in the middle of the night with horrible cramping in my legs and feet and I didn’t think anything of it until a couple of weeks ago when I realized it stopped happening around the start of 2014. Similarly on many occasions over the past five months I would get extremely light-headed if I stood up to fast from a seated position. The other day at work I stood and realized I was bracing myself on my desk for no reason because I hadn’t been lightheaded in about a month and a half. You're probably wondering why I wasn't more curious about these things as they were happening and why it took me so long to realize they had stopped happening. Truth be told there are so many random things that happen to me on a daily basis it is hard to keep track of them and it is also hard to differentiate between what may be Lyme/antibiotic related or every day wear and tear. I am also on seven antibiotics so ... there's that.

In early January 2014 we experienced the much hyped polar vortex. I woke up the morning of the highly anticipated negative degree weather and layered up with what I thought would be a good amount of clothing to ensure I wouldn't get frostbite during my seven minute walk to the metro. The meteorologists were talking like it was the end of the world. It was colder in Washington DC then it was in Alaska. In my head I thought I was going to step out into the tundra and freeze my bits off. In real life though, I was already sweating profusely before I even made it outside.

Remember those hot flashes I mentioned in my last post? I walked to the metro in negative digit weather while I slowly removed layers of my clothing. My hair and hat were damp because my head was sweating. I had an icy sheen on my forehead because my sweat was freezing. I also had frozen sweat on my back and under my armpits. By the time I got to my office I was holding my coat in my hand and was completely overheated in damp clothes. Polar what? Most of my colleagues remained in their coats and scarfs until the afternoon while I continued to sweat profusely at my desk. A week or so later I came down with a nasty cold. I suspect my icy, wet clothing that I commuted to work in had something to with it. I am excited to report that I haven't had a hot flash since mid-January. I am still having temperature control issues but I am now varying degrees of cold throughout the day with an occasional instance of feeling warm, but I wouldn't call it a hot flash.  

I can't quite put my finger on the exact moment but at some point between the last time I posted (12/13/13) and a few weeks ago the brain fog that I have experienced throughout my treatment lifted. I feel mentally charged. My mind is clearer than it has been since before my diagnosis, and my energy level is through the roof. In fact, my mind is telling my body that we're better. I know this is going to sound weird because I just said my mind is clearer than it has been in awhile, but I'm having trouble focusing. It is not like what I experienced when I wrote about my short term memory loss leading up to my diagnosis, it is more like there is so much going on in my mind I can't keep up with it. 

On the flip side my body is physicially exhausted. I have been dragging it from place to place trying to keep up with my mind which keeps encouraging me to attend a lot of social events. The cold damp weather is not doing me any favors. I am physically wiped out, extremely achy and am trying to find a happy medium between sleep and socializing. So far I can't say that I've been successful in doing that.

My mind is clear, yet I am having trouble focusing. My energy level is through the roof yet physicially my body is exhausted and feels like it is falling apart. 

Good news... right?

24 Months... and Counting

HAPPY ANNIVERSARY TO ME?

November 25, 2011 is the day I started taking antibiotics for my Lyme disease treatment. About two months later I was told by my doctor that my treatment would last six months to a year. Having been treated for a month during my first bout with Lyme disease in the mid-nineties, I thought my doctor’s estimate was outrageous. November 25, 2013 has come and gone. I am still in treatment for Lyme disease.

If you are new to this blog, reading from the beginning to present will bring you up to speed on my battle with Lyme disease. I have been discussing my personal experience along with how the debate over Lyme disease testing, whether it can be chronic or not and the treatment have affected/ been affecting me.

DID YOU KNOW?

There is an anti-malarial medication called Coartem that has been in high demand in the United States. Occasionally it takes a few days for prescriptions to be filled because it is not always available. You are probably wondering how there could be a shortage of an antibiotic for malaria in the United States and why I know this fact. Coartem has been yielding great results in battling Babesia, one of the other tick-borne illnesses I have. I have been taking it since September. The great thing about Coartem is that is reacts badly with 4 of the other 5 antibiotics and one of the supplements I am currently taking. Every fourth week I get to change up my medication and supplement regimen so I can take the Coartem without causing harm to my body. You’re probably already thinking that my two plus years of taking multiple antibiotics for my Lyme disease treatment is causing me harm already...

YOU’RE TO YOUNG FOR MENOPAUSE

I had an appointment with my doctor in mid-November and I mentioned to him that I was having trouble regulating my body temperature. He made a note of it in my file and also told me that in my latest round of blood work one of the numbers for my thyroid function was off.

Since mid-November my body temperature regulation issue has become much worse. When I go to bed at night I am cold. Cold as in shivering and full of goose bumps. I put on many layers before bed. When I wake up in the morning I am drenched in a cold sweat. By the time I walk outside to go to work I am feeling really warm and am never dressed correctly for the weather. Despite being underdressed I keep sweating through all of my clothes. At some point during the day at my office I cool off and then I become really cold which leads me to throw on the layers before I go to bed. Two out of three things could be happening here:

1. The new antibiotic cycle mentioned above has riled up the tick-borne bacteria that I am harboring, and my body is trying to get rid of it, or

2. Due to the amount of antibiotics I have been on for the past two years, my thyroid has been affected, or

3. A combination of 1 and 2. 

On a few occasions while mentioning my hot flashes at work, I have been told I am too young for menopause. That statement is the only funny part about this hot flash scenario. Clearly more extensive blood work for my thyroid is in my future.  

IT'S THE MOST WONDERFUL TIME OF THE YEAR

It’s that time of the year again. The Christmas trees are all decorated, holiday music is blaring all day long in at least one co-workers office, and everybody is bringing holiday treats to work that I need to avoid. Usually I am good at sticking to my Lyme diet and ignoring holiday parties, but over the past week and a half I got caught up in the holiday cheer and did a few lunches with friends, sampled cookies, cupcakes and chocolate at various parties and drank a couple of sodas. In what may or may not be a coincidence right before I started indulging in holiday sweets, I came home from work one night, sat down on my couch and started crying. And I couldn’t stop. It was most likely a combination of exhaustion, increased aches and pains from a few days of wet/cold weather and the fact that everything is very open-ended in regards to how long this will keep going on and when I will actually feel human again. I guess every once in awhile a good cry about this frustrating battle with Lyme disease is therapeutic. I woke up the next day with a stuffy nose, puffy eyes and one of those nasty headaches you get after crying for hours. Once I started moving around I felt better and was in a good mood by the time I got to work. As it turns out, that headache I just mentioned above is nothing in comparison to what I have been dealing with since I decided to let sugar back into my diet.

Processed sugar is one of the many things I was told to cut out of my diet when I started my treatment due to the fact that it causes an inflammatory response when consumed, and people with inflammatory diseases do not need to increase their inflammation. As you can see above, I really sugared it up for the holidays. I’m not saying I have been completely processed sugar free throughout my treatment. Every once in awhile, never on consecutive days, I really want cake. Or pie. Or chocolate. Or soda. It always tastes good going down and then I regret it when my symptoms flare up.  This was the first time my indulgence spanned a block of consecutive days. 

This past Thursday I got a headache around 4 PM while I was at work and I ate a mini-snickers bar. My headache went away. But the right side of my neck and shoulder were throbbing. Later that night the headache came back while I was trying to go to sleep. Between the headache the shoulder and neck discomfort I couldn't fall asleep. Friday at work the headache started at about 4 PM again and I ate another piece of candy… well more like a handful of Hershey kisses. This has happened to me around the same time every day since. Each night my head, neck and shoulder aches have gotten worse. Last night was the worst night since my sugar binge headaches began. The pain in my neck and shoulder was about ten times worse than the first night. My ears had stabbing pains in them. My jaw hurt. I was dizzy and at one point it felt like my brain was trying to climb out of my head. I couldn’t get comfortable and was up till the wee hours of the morning tossing and turning, really regretting my week and a half of bad food decisions.  


Today my headache came knocking at around 4 PM and I didn’t answer. I am ignoring the sugar craving and my headache is getting worse. As I am writing my neck is getting more tense by the minute and my jaw hurts. I hope my family is ready to deal with my sugar withdrawal during Christmas since I am heading their way tomorrow. 

(Click here, here and here for major food-related incidents I have written about).  

DO YOU THINK YOU ARE GETTING BETTER?

This is an interesting question that I am often asked. My day-to-day battle with Lyme disease is very up and down. Actually sometimes the hourly battle is up and down. It is best to look at the big picture when trying to answer. I can honestly say, with a big grin on my face, that I am doing much better than this time last year. Isn’t it funny how a potential thyroid problem, being on six antibiotics, experiencing heightened aches and pains from the winter weather and exhaustion count as “doing better”? 

I should say, energy-wise I am doing better. I am more active then I was year ago. And while I still have to take a lot of naps after a full day of activity, the naps are not as long. My parents even commented on my energy level when I was visiting in November for Thanksgiving. They were excited to see me more lively and in a better mood than I have been in for many, many months.



Side Note: 

The night before Thanksgiving I went to a Rob Zombie concert with my friend Laikisha at the 9:30 club in Washington, DC. It is a small venue, and we pushed ourselves up near the stage to rock out for the show. In addition, we also got knocked around since we were standing at the perimeter of the mosh-pit. With aching hips, legs, and shoulders I woke up the next morning and was on the road by 5:15 am to drive 5 hours north to visit my family in New York. I wouldn’t have been able to stand up at the concert last year for the whole time, let alone get 5 hours of sleep and then drive to New York for Thanksgiving. Who am I kidding. I don't even know if I could have physically gone to the concert last year. Even though I was tired and had to take a lot of naps during my visit in New York, my parents claim I was energetic. So there you have it. I am getting better. The process is slow as molassis, but I am getting better!!