The Real Walking Dead: A Tick Born Disease Story.
It was few years ago when I found one tick on me in a time of the year I cannot recall very well, but it seemed to be the fall of 2014.
This was a very rough year for me, marked by the death of my father in May. He fell ill after catching an influenza virus. He then became infected with a bacterial infection, known as listeria, and the aftermath of it. A series of complications, including sepsis, encephalo-meningitis and endocarditis compromised his already weakened immune system. It was terrible to see dad fighting for his life for four months.
Later, in the fall of 2014, another disappointment slammed my self confidence. A long sought opportunity for employment came to a final destination. It was a job that would have allowed me to travel oversea to visit my family more often and with much less financial burden. This was a period of my life where and when I was looking to earn more, because freelance jobs as an artist, and fitness-nutritional consultations are loaded of too many financial voids.
I also had the stress of my ever growing student loan payment, which was reaching the 100K mark. I simply could not handle it.
These stressful events of my life topped a string of previous ones, making me emotionally and mentally tired. Perhaps even lowered my imune system. I overcame many things in life but this was different. I felt beat, abated and sad. Ultimately on November 2014, I came down with a flu that took longer than I wanted to resolve. It left me fatigued and weak for weeks. Becasue of that, I was forced to decreased my daily physical activities, including fitness and aerobics. I beilive sometimes afterwords, I must have got my first tick bite.
It happened in my house, not on a trails while running, as some people might think. We tend to think about ticks and the outdoors, but if you have a dog or a cat they can be indoor. This was the case, since we have a dog.
A tiny tick crawled on my knee while I was sitting on the sofa of my living room on a late evening. I promptly removed it with tweezers and treated the area with tea-tree oil, peroxide and something else. The pesky pest, perhaps atatched not more than 3 minutes, left a minuscole red dot. I was not much concerned but a little nervous because I knew ticks carried lyme disease and that alone terrified me. I immediately went on the CDC web site to read the guidelines on ticks bites. Excerpt from cdc.gov "....In most cases, the tick must be attached for 36 to 48 hours or more before the Lyme disease bacterium can be transmitted......".
It was conforting to read. I knew this one was not attached for hardly any time. I recall removing few ticks from our dog Diva, and misplacing one. Later the same one, eventually, found its way to a new host.
The little red dot on my knee cap oddly stayed for about 4 weeks. It never seemed to disappear.
I never thought about sending the tick for testing or even pursuing a trip at the local Urgent Care or ER place. I trusted the Center for Disease Control guidelines. I did not want to over react and I pictured the medical staff laughing at me and my paranoia. I am a little hypochondriac but I found reassurance in the CDC guidelines which declared my chances of getting lyme disease almost as slim as winning the lottery.
During that period I had a decrease in motivation to workout either in weight training or running but I still made it to the gym almost regularly 5 days a week.
When 2015 came around I was still under the weather in terms of feeling down, but always found a push to motivate myself to fitness training. As the months went on, toward the spring, I noticed an additional decline in motivation to produce my artwork. I was trying to get more exposure in local art galleries as well as art shows and attempting to paint more. I did have few very good bouts of creative streaks but for some reasons they did not last too long.
Also the desire to prolong my strenght training workouts, which tipically used to last from 60 to 90 minutes a session several times a week was going noticebly down. I begun shortening the time I dedicated to fitness training, and opting instead for what I call "mantainance" workouts.
I still wanted to train to participate to figure and bodybuilding competitions, but I was lacking the "hardcore" motivation necessary to push for extra squats or dead lifts. My weekly milage went from an average of 20-25 miles, to a 15 -10 miles. I skept more runs too. For those people who say running is addicting, I can argue this is not true at all. The more you skip the more it becomes addicting to omit your regular runs.
I did not like the lazy trend I was experiencing, but this blanket of heaviness and fatigue on me was very hard to shake off.
On June 2015 I got another tick bite. This time it was much more serious. I got bit in the middle of of the night, around 3 am. They say that 3 am is the hour of the devil......indeed must be true looking back at all this.
The tick was brought in, again, by our dog at that time treated with K-9 Avantix. My reviews for this popular fleas and ticks repellent treatment is that it does not work well if your pet goes through heavily wooded aread of Western Pennsylvania.
I was awaken by an odd pain on the right side at the height of my bra strap. It felt more like a skin tag or mole to the touch -I do have some sort of mole on the left side- and for a second I thought that it was strange it was bothering me. But then I suddenly knew, it was not a skin tag. I remember thinking.....this feels like a tick. With fear, I went for a quick check in front of the bathroom mirror, and there it was a fully engorged tick. I removed it with a decisive pull and placed it in a tiny vial with alchool for the doctor to examinate. I was following the CDC guidelines again. How naive and dumb of me! Doctors do not examine ticks!!!
I treated the bite mark with peroxide and tea-tree oil, then headed to the local Urgent Care center about 10 hours later.
The doctor reassured me it was almost an overkill to even prescribe me the prevention treatment of one dose of doxycline. However, he added, "we want to be sure that we cover all bases", and proceeded to give me the standard dose of this antibiotic. He completely assured me that I was going to be just fine and that I most definetely did not have lyme disease.
I was back home and about one hour after taking the antibiotic I begun feeling very unwell. First it was the horrid stomach cramps -a sure antibiotic side effect- then nausea, weakness of limbs, an overall flu like sickness, mouth fatigue, in fact I just was having trouble even thinking about words and putting them together. This was something I never experienced before. I was fading away.
I could barely force myself to call the Urgent Care. Again I trusted another health care professional who told me that this was a normal reaction for people who take doxycline for a tick bite, "... you are lucky! Some people have to take it for 21 days. Think of that!!". Yes I really could not have imagined to be sick for so long.
Months later, when I pieced together all these events, while investigating my mysterious sickness, I figured I had experienced the classic herxaimer reaction. I was already infected with Borrelia (Lyme Disease) from that first tick bite on my knee.
At that time I had no idea of the dark, confusing and conflicting world of informations of Lyme Disease and I did not care much eihter because I TRUSTED medicine, doctors and the CDC.
My Health Slowly Goes Downhill
Everything was fine the day after the tick bite and the weeks that followed or so it seemed to me.....
As the summer unfolded I felt more tired than usual, I thought because of work. I was volunteering for Americorp that summer and it was stressful and I was not up to it. I felt sleepy and tired around the clock. I begun to have hard time going to the gym at the end of my work day, I had very low motivation. I had frequent migraines and headaches, all very persistent too. Most of my headaches seemed to be localized on the left part of my head. Over-the-counter analgesics were not working too well to relief the pain. Somedays I was experiencing random limbs heaviness and dizziness. I attributed all these to hormonal changes that women go through life, even so the headaches were very strong.
Other unusual symptoms begun to pop up as time passed, but they were all random and bizzarre. My lymph glands seemed always sore. I had dizzy spells and my arms felt heavy from the elbows down to my hands. I noticed that holding the steering wheel of my car was becoming a chore and I just wanted to let it go. Many times I had this feeling of riding on a boat at sea or being drunk. All this was becoming very annoying and a little concerning. Some days I felt good, some days I did not.
On September 2015 I suddenly developed two oval rashes on my left arm. These rashes were extremely itchy and I was not sure exactly what to make of them. I was visiting my family overseas, in Europe, so I sought consultation in a pharmacy where I was told the rashes looked like a contact infection-rash, a dermatitis.... maybe? I bought some topical treatment but it really did not help much and it burned really bad too.
Those days during my runs I had weird and odd chest pains, or it felt like I had needles in my chest including palpitations. I was becoming very paranoid and started thinking that perhaps hormonal changes were giving me heart trouble.
The oval rashes lasted on my skin about three weeks then slowly disappeared.
On October 2015 I was back in the US. To travel oversea always effects my circadian cycles and I suffer jetlag for about 10 days, but this time it was different. I just could not shake off the jetlag and the fatigue from the trip.
I was having trouble getting up in the morning, I am not talking early morning, but simply waking up at a decent time. Infact getting up from bed was becoming more difficult. I thought maybe it was prolonged travel fatigue.
I slept longer and longer. I felt the need to move my bed time to earlier hours. I went to sleep at 9 pm on the average but it did not matter because I slept until 11 am sometimes beyond that. This was a new strange pattern.
In November 2015 I decided it was time to see my PCP because this did not seem normal for me. She ran the usual tests, and everything came normal except for some anemia. I also did other additional testing such as colonoscopy and endoscopy because I was having some bouts of stomach cramps that lasted off and on for days. Again, everything came back normal. After my colonoscopy in December I had two weeks of energy and everything appeared to be back to normal.
In January 2016 I was experiencing extreme fatigue very difficult to shake. The worse part was coming back from the gym workouts and not being able to wake up in the morning. It looked like my recovery time from minor weights workouts was becoming longer. I recall doing a Monday leg routine and having muscles soreness and back pain for almost 7 days. On top of that, the days after I was useless in terms of energy. I felt so dead.
The Tea Mystery
In February 2016 I went to see my doctor again. I am prescribed all the routine testing one more time, and we are thinking of possible thyroids problems. The blood tests kept coming back normal except for the anemia. With my doctor we tried to investigate this anemia issue. I was not having internal bleeding, blood loss conditions, hormones or other diseases that could cause that. The testing, at least was showing nothing. There was not reason for the anemia.
I reasoned with my doctor and asked her "think about this, why would I have anemia? I eat iron rich foods, I have a whole foods diet....I did not even experience this when I use to run 30 miles a week years ago...."
She admitted it was odd, so we ran a long list of foods and drinks....I did not drink alcohol at all either, did not smoke....
We came to the conclusion that my daily intake of four cups of tea was robbing me of the iron. She recalled of a patient who had a similar experience. Seemed incredible to me but true. It was a good explanaion and a quick research on the internet and reading of studies and scientific papers on polyphenols had certainly convinced me of this possibility. Finally the mystery to my fatigue was solved!!!
I begun a vigorous iron build regiment with supplementation and daily doses of canned oysters (the highest source of heme iron available, even more than red meat).
I managed to bring my iron and ferritin levels from 8 mg to 22 mg in eight weeks. Not bad. However, nothing had changed in terms of health, because I still felt tired, dizzy and achey most times. Not to mention no energy at all. It had been months now, hoping to get better. My life seemed to gravitate just about trying to stay awake. Every new day I could not accomplish a thing because I was so unwell.
I felt like a zombie.....literally if there is a real Walking Dead....it was me. I was alive but I felt dead inside and outside.
Most days I just wanted to close my eyes and sleep, or stare at the wall. I had no energy to move or, even worse, to think. Yes I could not think any longer. I was also having difficulty recalling simple words or putting a sentence together. I had to think a lot and kept having so many words mishaps.
Once I was pulling out of my driveway and suddenly for about 10 seconds, I sat in the car wondering where I was going.
I went to bed exausted and I woke up exausted, even if I slept like I took an elephant tranquilizer shot. I was in a perennial lightheaded dizziness state like I was a drunk. Somedays driving was difficult. It felt like I was under the influence. Yet I was perfectly sober. Social functions became difficult and I withdrew from everything.
I was becaming very depressed from this condition. I could not find an explanation for this unwellness.
I scouted the he internet for months. Maybe it was peri-menopause. Could have been MS? Or was it my heart and circulation problems?
I kept going back to my anemia. I could not really accept that four cups of tea a day could cause such condition, simply because I had been a tea drinker for many years and I never had that problem.
I came across an article about hemolitic anemia which was present in patients with various disease and those who had contracted Babeosis.
I knew that Babeosis, or Babesia, was a tick or vector born infection, so I expanded my research in that area and lyme disease. It did not take long to find out that all my symptoms seemed to match perfectly those of Borrelia, aka Lyme Disease.
Finally a diagnosis
The more I read about Lyme the more I begun to put all the pieces together. The tick bites....the rash....the symptoms.....I KNEW I had lyme.
I started reading and researching about testing for it and the more I read the more I became concerned.
I went to the doctor again. I explained that the iron treatment had not really gave me any energy back, and I was still very unwell. I thought I had heart problems because of weird palpitations. My doctor was concerned but did not know what to do. The worse part was that I could not even explain my symptoms too well either.
For example I had weird stabbing pains but they were so random just like the twitches which lasted days. I thought they were very, very abnormal but the doctor thoughts they were normal. At one point I told her I wanted to be tested for Lyme Disease because of my history of tick bites. She was very skeptic but proceeded to grant me this wish, possibly just to shut me up. Then she told me, "you know Lyme Disease testing results are very difficult to interpret.....".
I knew this. I knew also that the test was highly unreliable.
I hoped to be one of the lucky ones to get that positive result.
Two days later Quest Labs test and (not surprisingly) came back negative. I did learn later, from my online records, that my test result was actually inconclusive.
Since I was determined to get to the bottom of my illness. I proceeded to look for a Lyme Disease specialist right away. In the Lyme world these doctors are called LLMD (Lyme Literate Medical Doctors). I did not want to end up like many people with lyme who go misdiagnosed or undiagnose for years.
My search brought me to a local doctor, an infectious disease specialist who had treated an aquaintance of a friend.
This doctor was doing things differently than my regular doctor. It gave me several test to take, about 30, including the 2 tier, classic Borrelia test, (ELISA and Western Blot), few co-infections test (Babesia, Bartonella), along with, ANA, Lupus, EBV and a series of other tests. This specialist was so busy with lyme patients that had a very long waiting list of 4 to 5 months.
An opening on the waiting list anticipated my apppointment by 2 months. On May 30 2016, my doctor, an infectious disease specialist, told me I had tested negative for everything execept the two CDC tests the ELISA and the Western Blot, which confirmed I had lyme disease.
I was happy to learn that my health mystery was finally solved. Unfortunately I was also learning slowly that this was going to be only the beginning of a very long health nightmare.
Continues on "My Lyme Disease Odissey "