Lyme Disease and The Modern Day Vampire – My Story Part 1

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*This is a medical disclaimer to anyone reading, this blog is only about my story with Lyme Disease and the events around my personal healing with this disease. I am in no way making a recommendation as to a specific treatment to a medical condition which would be considered out of my scope of practice. I can in no way accept professional responsibility to the various ways in which an  individual decides to treat their personal disease or symptoms.

Having said that I feel compelled to tell my story due to the tremendous amount of people that I see on a regular basis who “come down” with Lyme Disease.  As most of you know by either personal experience,  knowing someone with this disease or perhaps reading in the news,  it is a  multi-systemic disease that can affect anything from your vision, breathing, mental state, nervous system, thyroid, kidneys,  joint, limb, dental health and reproductive tract. It can devastate your immune system and hinder your ability to ever recover and live a normal life again. For many people with this disease they have, unfortunately, come to the conclusion that they will never live a productive life again. Some are bed-ridden or wheel chair bound. Some have yet to be “officially” diagnosed because many never had the traditional signs and symptoms early on of  Lyme Disease. No classic bulls-eye rash, no fatigue,  in some cases never even remembering a tick-bite. Many people have been falsely diagnosed with Rheumatoid Arthritis, Multiple Sclerosis, Lupus and the list goes on and on.

Before being diagnosed with Lyme Disease, I saw many patients who appeared with the nebulous symptoms of Lyme Disease, mainly chronic fatigue, wide spread joint pain, low grade fever, tingling and swirling sensations and brain fog. To be honest, as a practitioner, sometimes the multi-faceted nature of their complaints almost seemed a little hysterical. Especially since these patients were still able to participate in most of their activities of daily living. They were feeling very bad  and yet most were able to accomplish necessary daily activities and chores. They like everybody had stresses and strains in their life whether marital, financial, career or children  but who doesn’t?  That’s just life as we know it.

My Lyme saga began in April of 2011 while training for a  triathlon. I was having a great time feeling strong and powerful as I began to condition my body for the October event. In the spring of 2011, I was swimming 70 laps, riding 30 miles and running 15 miles when my life as I knew it was about to change.  Little did I know penciled in on my karmic dance card was the “Modern Day Vampire” !  My experience with this type of blood sucking Vampire was hardly the romantic interlude we have imagined with the exception that is was life altering and intense!

One spring afternoon I was relaxing on my bed next to my beautifully intuitive cat; the one who likes to lay on top of whatever body chakra she intuitively feels  needs healing and I found a tick on my stomach just underneath my belly button. I know it had not been there too long as I had just taken a shower. I peeled the nasty little body snatcher off and looked very closely to be sure that I got the head of the tick  as well as his whole body, as they tell you to do. I suppose looking back one can never really be to sure you have gotten the whole thing; it’s kind of like breaking a crystal glass on the floor and being sure you “got” all the slivers. The only real way you know is to never find a piece stuck in the bottom of your foot!

The tick that bit me was a dog tick and not the traditional small, microscopic, deer tick we have learned is associated with Lyme Disease.  It stayed on me  30-60 min and no longer. I did keep the tick in a plastic bag, thinking if I ever needed it I would bring it to have it examined. The killing was a deliberate and premeditated one. I was thoroughly disgusted at the site of this body snatcher kicking and screaming, as I with the precision of a surgeon,  gently pulled it from my stomach with tweezers. Mentally, I quickly brushed off this soon to be life-changing event and went on with my day.

I was a little concerned about the bite because through my patients I witnessed the devastation of Lyme Disease but I didn’t put too much energy into it consciously.  Somewhere in the back of my mind, there was that small still voice, telling me to “stay vigilant”.  You know that tiny echo of the inner consciousness we all hear and unfortunately ignore,  but later we regret because we were NOT listening? That would  be Lesson 1-we truly do know what is the right answer to our problems, we just need to be quiet, listen and trust.   Being quiet and listening can be easy for some depending on who you are, it’s trusting ourselves, loving ourselves that can be the challenge. Everyday I would peer down at the red bump left behind from this creature’s bite. After 1 week the red mark had faded some but I began to wonder, is this normal for it to still be there? Still voice, still voice, still voice……. No response by my conscious. I went on about my day. Then one small white bump appeared two inches away from the bite, it looked like a pimple under the skin. It was very tiny. Looked harmless enough but still thought “that’s weird”. Still voice, still voice, still voice….. Again, nothing from conscious mind! Fast forward 3 weeks. Red bump faded a bit but still a tiny bit visible, white bump still there. Still voice, still voice, still voice….now screaming!  Conscious mind, FINALLY LISTENED! At appointment with primary care doctor, I found out he was not there and I would be seeing the Nurse Practitioner. She was nice enough, took one look at the remnants of the bite and the white bump, told me it was not a sign of Lyme, wasn’t sure what the white bump was but that we could run a Lyme Test and if it came back positive we could give the 3 weeks course of antibiotics. One week later the test came back negative. Nope, no Lyme disease according to the doctors office. I guess I should have felt relieved but being an experienced practitioner in holistic and biological medicine somehow these findings  didn’t comfort me. You see it’s not that I don’t “believe’ in western medicine, I certainly know there is a time and place for it but my feeling is that the body is a three-dimensional map of itself.

A true healer understands that there is no way to separate any one part from another. If your head hurts don’t only look to the head to find the reason. You must also look deeper. My experience is  that the problem is generally somewhere other than where the source of the pain is on the body. More than likely the gut. This is where the majority of the immune system resides. In other words the immune system lives in and around your intestines. This is a larger than life epiphany for people out there. A concept not easy to grasp. Wow, to think that the 25 foot membrane that digests our food is more than just that! Who would have guessed? I actually believe more people have heard how important it is to take care of their digestive system but many turn away from that theory because most patients I find, would rather change their religion than change their diet! I understand because in many ways I feel that way. We get into our habits and they can be very hard to change.

I continued with my training throughout the spring and the summer. It was in July that I began to notice some very unusual aches and pains.  I have always been so blessed with my health that any physical ache or pain seemed strange.  So when the sharp, stabbing, knife- like pain began in both knees during a 10 mile run my radar went up immediately. I was hardly able to walk home that day. I went out over the next few days and in the middle of the run again that damn pain. Like cut glass tearing apart my ligaments and tendons. Felt like the inside of my knees were bloody! What is going on?  Denial allowed me to chalked it up to over training and I took a two week break from running. Thought I just needed to take a break from running but then the chills began every time I got into the swimming pool to train during the summer. There went another clue I ignored. The symptoms began to extend to all strenuous activities. Even though some days were well into the 90 degree weather, I would immerse my head in the water and full body chills would rack my entire body.  After the 5th or 6th time of this happening, I began to wonder if perhaps I had an infection that I was not aware of….possibly a kidney or tooth infection crossed my mind. Never would I allow my mind to go to the Lyme diagnosis thing.

September came and although I was having these strange symptoms I kept training. The symptoms were never so acute that I was unable to work or function but by the fall I began to have sweating all over my body, heart palpitations and pain in the tendons and ligaments of my elbows, hands and feet. I suppose I never paid too much attention to them because they were not constant. They would come and go in waves.  Literally some moments were good and others were bad. The stress of running a busy office and using my body so physically as most chiropractors do, I would find that a lot of symptoms happened at work. I continued riding this train to hell for another 2 months of this insanity before I crashed and burned hard.

It was Thanksgiving Day,  November 2011. I went out for a 15 mile bike ride. Came back made dinner, hung out with my family and by 9:00 pm I was in bed with fatigue, flu-like pain, chills, swirling all over my arms, legs and sternum that could stop a large elephant in it’s track! My throat was sore and I felt warm to the touch and oddly enough my temperature seemed to be going down. Not a good sign. Fever is always a good indication because its saying your immune system is doing it’s job but a falling temperature tells you the body is shutting down. Now that’s some scary %&$$!  In the morning, I made an appointment ASAP again with the doctor’s office that originally took my blood after the initial tick bite because now all the background chatter in my inner consciousness that had been ever so vigilant all these months and yet push to the side, was now full tilt boogy in the forefront of my mind. I began to realize what I was dealing with was most likely, dreaded Lyme Disease. I called my sister who is an Internist and after some back and forth about all the possible diagnosis we both came to the conclusion I indeed had Lyme Disease. This conclusion just after she had told me of a patient she heard of that died from Lyme Disease. As you can imagine my response was “And you are telling me this because?…..” Arrrrgh.

The next morning the nurse practitioner again took a battery of test ranging from hormone imbalance, rheumatoid arthritis, mononucleosis and lupus. She did not want to check for Lyme but I insisted. I went home and got in bed and stayed there for the weekend. I was unable to do anything except to wait for my blood test.  I began a cycle of doxycycline that weekend, which is the recommended antibiotic for Lyme. I did feel slightly better by Monday but not much. When the test came back, they were all negative except for blood in my urine and dehydration. Even the Lyme test was negative but it is a well know fact that Lyme is not diagnosed with blood test. It is a clinical diagnosis. The antibiotic never made me feel anymore than 10-20% better.

Once I made the official connection that yes, it was true, I had Lyme Disease I was terrified. I made an appointment with a Lyme literate doctor and spent 3 hours conferring with her about my disease. She also confirmed my diagnosis, at which time she told me I had chronic Lyme disease and the best I could do was manage it with multiple antibiotic, anti-malarial, and antifungals. There was no known cure 7 months into this disease. As you can well imagine my mind began to race with horror as I imagined the active life I had now being threatened to be taken away by a tick bite.

To be continued in Part II








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