Kenneth's Story

Before I say anything else I have state that when you are dealing with any chronic illness there is no definitive start and finish. The experience is by nature a roller-coaster ride.

There will be victories and there will be failures, an unavoidable stepping stone to good health, but through this will come personal growth. During your deepest trials your true self is revealed and what you want in life becomes a lot easier to define.


My story is not unique by any means. 

I didn't ever think Lyme disease would touch my life or pay it's existence any mind. It was something you saw in public service announcements or heard about through vague warnings about faraway places where people were getting sick.

It was a looming monster that everyone had been lulled into believing was as simple as an unremarkable flu- easy to cure and hard to get. I blissfully played outdoors as most children do, worrying little of the poppy-seed sized ghoul cleverly waiting in the underbrush. I did not check for ticks nor was I ever told I had to.

I did not live in Connecticut, New York or New Jersey so I was "safe". Where I lived wasn't a high-risk zone or so we all thought. Not until I was an adult and already very sick did I come to know that Lyme disease is actually highly endemic to New England and many other parts of the United States, an under-publicized and absolutely vital piece of information for those living in such areas.

However, my bliss was not to last. At around seven years old I developed a hive-like rash that spread across my arms, legs and torso. My parents took me to the ER where the doctors could not identify the cause. I was temporarily placed on Amoxicillin, to no avail. After that did not work my parents returned to the ER and once again the cause of the rash could not be identified.

The ER doctors suggested that my parents give me Benadryl to resolve the problem. It did not work either and over a period of time the rash came and went until finally subsiding on it's own. Over the next few years I became ill with many different viral infections including Conjunctivitis and Strep Throat. Many of which seemed to take longer than normal to remedy, sometimes a month or more. Not much concern was given to this and life went on as usual.

Progressively new symptoms began to develop, such as fatigue, insomnia and behavioral issues. Signs of psychiatric imbalance also became noticeable. In particular,  obsessive compulsive disorder. Along with these abnormalities a child who had once slept normally was now only sleeping two to three hours a night.

Difficulties in school also became a problem. I had always been ahead of the curve when it came to learning but seemed to have suddenly developed ADD-like behaviors. It became harder and harder for me to process information in a classroom setting and it started to show in my grades and increased absenteeism. I didn't have the energy to go to school anymore so I would attempt to find excuses to stay home- some worked, some didn't. I also became more aggressive and argued with others a lot more than I ever had before.

When the time came to enter middle school more issues began to pop up. I began to experience Bipolar-like symptoms such as mood swings, irritability, rage, depression and psychosis. Alongside this obsessive compulsive disorder remained and stomach issues similar to irritable bowel syndrome started to occur. Ringing in both ears also began to develop as well.

At age twelve following an aggravating build-up of symptoms and lack of sleep I had reached my breaking point. In the middle of the night I was watching television and suddenly I couldn't see. For a brief second my vision went black and when it returned I could see sparkling lights floating in my line of vision. During this strange episode I began to panic, which led to hyperventilating and scaring the daylights out of my parents. It's not everyday your child runs into your room screaming: "I can't breath!". 

Cognitive dysfunction, fatigue and insomnia would stay with me throughout middle school and carry over to high school as well. Increased psychiatric instability went on to become a major factor in my life throughout this time and beyond.

Many of the symptoms mentioned above would end up staying with me on a near-permanent basis, with the exception of the stomach issues. After age thirteen, my irritable bowel-like stomach problems subsided for a few years. Between the ages of fourteen and nineteen psychiatric illness was a constant in my life. Dealing with the stress and work of high school become a near impossibility and when paired with cognitive upsets, fatigue and insomnia led to difficulties with concentrating and functioning on a daily basis.

It must be noted that it's not as if I didn't bring these issues to the attention of the school staff either- it's simply that my plea's for help were tossed off as "teenage angst". I could see in my behavior that there was clearly something amiss, but no one wanted to deal with it at the time. Due to this lack of care or the result of being overworked and underpaid, my psychiatric issues were allowed to spin out of control and dealt with only as the result of a mental breakdown at the age of nineteen.

Up until that time I had experienced all the classic symptoms of mental illness. From A to Z, every symptom imaginable fit the bill for me, but the evidence went unnoticed. Over the period of a year, between the ages of18-19 years old, triggered in part by psychological trauma, tension slowly collected and I ended up completely breaking down. I didn't eat, drink or sleep and was a complete mess. Even after seeking treatment I was still unstable for another two months or so.

After be placed on an anti-psychotic my moods began to clear and control over my emotions was part of my life for the first time in years. My obsessive compulsive disorder remained largely the same, but cycled in intensity enough to be manageable. I thought for the first time in my life I had attained some freedom from "illness", but was only to be undermined, as processes were secretly underway that I had no way of knowing about.

Around the time I began treating my emotional issues I noticed the return of my irritable bowel-like stomach upset, with all the original symptoms it carried with it. I also began to experience mild joint pain. Over the span of the next few years these symptoms would begin to worsen. A running joke in my family began about how much my wrists and ankles cracked when I moved them. The pain and discomfort slowly became more and more noticeable, spreading to other parts of my body, including my knees, shoulders, back, arms, and hands.

During this time I went to my primary care doctor a number of times and received a diagnosis of both an unknown arthritic condition and fibromyalgia, with the latter being quickly forgotten. It was also during this period that I was first tested for Lyme disease. The results came back negative. However there were slight abnormalities found on some of my other blood tests. What these were I don't know. I was simply told, "There was a possibility I might have Lyme disease.". This very important fact would fall to the wayside for a few more years before being mentioned again.

At around age twenty-one I began having migraines on a regular basis. At first I didn't have them everyday, still quite often, but not enough to be debilitating. Due to their relative mild nature I considered them to be a side effect of the medication I was on. Over two and half years these migraine headaches began to increase in both quantity and severity, eventually leading to the point where I was having migraines nearly twenty-four hours a day, with periods of debilitating head pressure and pain.

Regardless of how I felt I continued to work both part-time and full-time. My job was the assistant manager position at a retail shoe outlet. It was an extremely stressful work atmosphere and there was very little time to relax while on the sales floor. It was after working at the store for about a year that I noticed I was feeling increasingly "ill". It started off minor, but grew in intensity. Months later I ended up quitting my job, but I did not tell them it was because I didn't feel good anymore- ever!

Things just got worse from there.

Not too long after I stopped working I developed an increased sense of depersonalization/derealization. I had always had a mild issue with this type of feeling, but this was different. Out of nowhere it was as if I had suddenly become robotic.

After around a month or two I finally managed to get in to see my psychiatric clinical nurse and she placed me on an antidepressant. It managed to elevate my mood enough so I didn't feel like I was totally adrift in space but it was not a cure by any means. It simply made day to day existence bearable. A massive amount of blood tests were done at the same time and it was found that I had extremely low Testosterone, Progesterone, DHEA and Vitamin D.

I was told that all the symptoms I had been dealing with were likely due to these imbalances, so I was placed on hormone replacement therapy, given instructions to take a massive dose of Vitamin D and to supplement DHEA. I attempted to be consistent with the hormone replacement therapy but felt ill much of the time I was using it. After five months I stopped the treatment.

My psychiatric clinical nurse didn't ever seem satisfied that there could actually be a reason other than mental health issues behind the increasing number of symptoms I was suffering from. However, she was the first medical professional to find serological evidence of something amiss within my body.

As my symptoms kept getting worse I slowly became more and more desperate until I finally reached an apex in late 2009. My arthritic symptoms were no longer mild and were now constant, fatigue was ever-present, migraines and head pressure were a 24/7 nightmare, gastrointestinal issues had become a daily obstacle and mental instability and neurological complications were an everyday experience.

This continued into early 2010 to the point where I was spending much of my time in bed due to extended episodes where I was in so much pain I didn't even have the energy to get up. I also began to have issues with my eyes.  

I had reached my limit and finally decided it was time to take my health into my own hands. I began researching my symptoms and started to wonder if I might have an autoimmune disorder such as Lupus or Rheumatoid Arthritis. I continued reading and absorbing as much information as I could and finally presented my concerns to my primary care doctor. She felt that an autoimmune disorder could be a possibility and scheduled me a whole roster of appointments.

A gastroenterologist, neurologist and rheumatologist were brought on board. My first stop was the rheumatologist who I thought would be the most understanding given my symptoms. However, this was not true at all. He was a very rude man who completely humiliated me. I was told I needed psychological help and to get right with god!

After leaving his office I was livid but thankfully was also being seen by the gastroenterologist right after, who ended up being a very educated and kind man. He diagnosed me with irritable bowel syndrome (IBS). I remain his patient to this day.

However, one good thing that did come out of my visit to the rheumatologist was finding out about my Lyme disease blood test results.

During the period I had been scheduled to see him I had also been placed on three weeks of Doxycycline as a "safety precaution" and I asked him why this had been done. He basically called my primary care doctor a fool for doing so and told me my tests were false-positive, claiming there was no possibility of Lyme disease. 

This galvanized me to do some research online and I found that most doctors don't check the actual positive bands unless they your test is CDC positive (100% positive). I was not CDC positive, however I found out that one Flagella specific band and one Lyme specific band were IgM positive on my Western Blot. Finding this out changed the playing field and set me on a journey to find out the truth about what was happening to me.

Next came the neurologist appointment and while the doctor was much kinder than the rheumatologist the mere mention of Lyme disease sent him into shivers. I had been doing research for weeks on end and had read extensively about neurological Lyme disease and knowing that I had many symptoms of this felt it was prudent to mention.

Upon explaining my findings he became nervous, acted strangely and left the room. Minutes later my appointment was cut short with the session ended by a brief statement that I would have the MRI I was interested in, upon which he exited hurriedly. It was very obvious he wanted nothing to do with me.

Evidence only continued to build towards a diagnosis of Lyme disease as during my three weeks of taking Doxycycline, two weeks were spent with me getting increasingly ill. Neurological manifestations became very apparent following the start of the antibiotic and I would later learn this was a sign of what is known as the Jarisch-Herxheimer Reaction or in lay-mans terms: Lyme bacteria die-off. Not that any of the medical professionals I had been to see knew of or cared to know about such a phenomenon.

I would see the nervous neurologist only one more time before his departure from his practice and his attitude changed little. Having garnered a tad more information about Lyme disease to carry under my belt during the gap between my first and second appointment I felt it necessary to bring up some vital questions. Not surprisingly I was completely rebuffed. 

I was told that the different neurological symptoms I had been dealing with for years were probably psychosomatic and a problem for a therapist, not a neurologist. So issues with cognitive ability, paresthesia and numerous other problems were basically a sign I was crazy- not sick. I also learned via my MRI that it appeared my brain stem was slowly sliding into my spine and then receding back periodically for an unknown reason and that it could be causing my headaches. Basically my brain wad periodically swelling due to inflammation and then relaxing back to normal.

However, my biggest issue with Dr. Anxious was how he went about presenting my MRI results. He started by saying that my MRI appeared completely normal but quickly ended his sentence by vaguely telling me that my brain stem was slipping into my spinal column (medically known as a Tonsillar Ectopia). There was no compassion in his words, no attempt to be humane- just cold uncaring disassociation. He could just as easily have been ordering a sandwich from the hospital cafeteria in the tone of voice with which he laid down life-altering information.

At this same time I was enduring a uphill battle to be taken serious by my primary care doctor. While she was understanding, I struggled quite a bit against her skepticism. She spent way more energy than necessary or professionally appropriate attempting to foil my quest towards a diagnosis, whether indirectly or not.

Over a period of four months I was tested via the unreliable Western Blot and the results came back with one negative and three equivocal or in most knowledgeable Lyme specialist's opinion: positive. It was a blessing that during this time I managed to schedule an appointment with an LLMD (Lyme-Literate Medical Doctor).

After much waiting I finally was able to get in to see the LLMD and literally within the first twenty minutes of my two hour appointment I was diagnosed with chronic Lyme disease. What had taken numerous doctors five years to give me no answers took the LLMD less time than it takes to eat lunch. He was abhorred by the lack of compassion and diligence found in the history of themedical care I had received, but was not surprised due to the controversial weight that comes along with a Lyme diagnosis.

My journey towards treatment was finally at hand after spending so much time seeking answers. He would get me started on my path to recovery but his parting words, "You have a long road ahead of you.", have definitely rang true. I was diagnosed with Lyme on May 18th, 2010 at 2:30 pm. It's the moment that changed my life and both moves and haunts me to this day.

Since that point I have experienced many things: serious treatment complications, mistreatment by the medical profession on numerous occasions, the realization that both my husband and mother have chronic Lyme disease as well, and seeing them battle the same uphill fight I have had to over the years, a near death experience caused by Babesiosis and the lack of understanding and knowledge by hospital staff that made my stay much more difficult, and I have been diagnosed with PTSD, cause in part by my struggles and various other factors. So many labels have been thrown at me throughout my life and now it all makes sense to me and I have a roadmap to work with on how to get back to wellness.

I have since gone to 3 other doctors, all who have helped me along the way and I am now over 50% better, still with some struggles ahead of me, but I am getting better everyday, especially knowing now how I got here. Knowing that allows me the understanding to find where I need to go.

From disastrous times I have lived, I have grown in many different ways. From the start I was emboldened after witnessing the lack of humanity I was seeing and in doing so I turned to Lyme community for understanding. Through my journey I've had conversations with many people also suffering from tick-borne illness and found them extremely intelligent, understanding and supportive. I hadn't experienced such a sense of community before.

This set the fire of inspiration and led to me becoming a patient advocate and activist. I started the Lyme Alliance of the Berkshires soon after, and it has since grown into something bigger than it started out to be.

So much change has come from such darkness. It has been very difficult, but through everything I have learned so much about myself and in doing so it has benefited many others. It makes me regret what has happened to me much less, and in turn value what I have learned.

Kenneth, 30, Pittsfield, MA