My “journey” began back in June of 2009. I’d noticed a spot that appeared to be a bruise on my upper right side. The bruise didn’t hurt, but grew (or expanded) over the next few days and then I forgot about it. A week or two later I was driving up to Maine for our annual lake vacation. My neck became stiff and swollen; I developed a raging headache and began spiking a fever along with aches, pains and chills. Wow, I thought, I must have some bug, or maybe the flu. But, as the miles flew by, I started to remember that strange bruise I’d noticed a couple of weeks back and the articles I’d read regarding Lyme Disease onset symptoms mimicking the flu. Could it be? I wondered.
During my two week vacation I continued to suffer from these flu-like symptoms and also, to experience extreme fatigue. No matter how much I slept I still felt exhausted. I decided I would make an appointment with my physician (one I’d had for 20 years) back in Windsor the second I returned home. I was very suspicious that, since this was not going away, this was Lyme.
By the time I returned home the “bruise” had almost faded away entirely. I went to my physician and explained what I’d experienced, including the expanding bruise. She sent me to get an ELISA test (blood work) done and reported back to me that it was negative. She thought it was “just some lingering bug” that would soon be gone. I continued to experience extreme fatigue, but kept soldiering on. By August, I knew this was not some lingering bug and returned to my Doc. She recommended re-doing the ELISA test (that I eventually found out shows up negative in 60% of people that actually have Lyme) and it came back negative again.
Still experiencing the fatigue, in September I also developed a severe eye infection (had never had any problems prior to this with my eyes) and went to an ophthalmologist. Then in October my knee became inflamed; in November and December I experienced inflamed aching muscles and joints. I was sent to a physician that specialized in orthopedics, then to a rheumatologist (for the Fibromyalgia my regular physician diagnosed me with).
At this point I had done a great deal of research on my own re: Lyme Disease, so I took it upon myself to find a “Lyme Literate” physician and called for an appointment. The new patient wait time for a first appointment was 4 months. I made the appointment, hoping that somehow one of these other specialists or family physicians would be able to find what was wrong with me.
December through the following April I continued to experience the fatigue and extreme joint and muscle aches, along with a bevy of other symptoms. I also started with a heart condition that caused me to be rushed to the emergency room. I was hospitalized for several days and diagnosed with Premature Ventricular Contractions (PVC’s). All the tests showed that my heart was completely healthy, but they prescribed beta blockers. In my heart I knew this was not the right treatment, so I refused to take them.
I was also experiencing “Lyme Fog” – where, at times, I didn’t know where I was or couldn’t understand what people were saying (even though I could hear the words). It was also getting difficult for me to retrieve words I needed to use in normal speech. I realized that whatever I had (and I was 99% sure it was Lyme) it was getting into my brain! And, although I was in agony at times from the aching joints and muscles, it was the heart and the brain issues that really had me scared!!
With a great deal of support, from my husband and friends that had suffered from Lyme at one point or another, I kept going and wouldn’t let all these know-it-all specialists tell me that it was nothing or “all in my head”. My husband urged me to try his doc that he felt was more up to date on Lyme. I went in with a list of my symptoms, and almost cried when I realized he was actually listening to me!! He signed off on some blood work that I would send myself to the IGENIX lab in CA (at a personal cost of $1200) and prescribed some antibiotics for me for several weeks. Well just guess what the results were that came back from the IGENIX lab (on the Western Blot test and several other co-infection tests)! I had Lyme Disease. There was no doubt about it. And it had been left untreated for over a year.
Throughout this whole process of “discovery” I had been growing angrier and angrier with each of my Doctor and hospital visits. A few months in, I had strongly suggested to my regular doc (of 20 years) that we have a Western Blot done and she had pooh-poohed it. I’d even offered to pay myself. It seemed everywhere I turned no one would listen. And, left untreated the Lyme bug had infiltrated every system in my entire body. I know there are many others that have gone untreated for 20 years and even longer – due to the ignorance and disbelief throughout our medical community (including the Center for Disease Control). Six years later I am still suffering from chronic Lyme, and I think if my original doc had just believed me and put me on a two or three week course of antibiotics that I would not have had to go through this hell! It makes me so damn mad.
Soon after the return of the IGENIX blood work I was able to have my first appointment with my Lyme Literate physician (an hour and a half drive – but worth it). He put me on numerous kinds of medication and that first year of trying to rid myself of the Lyme (borrelia burgdorferi) bug was almost worse than the year prior, largely due to what is called herxheimer reactions. By the end of the first year I was seeing a great deal of improvement but then I’d “relapse” when off the meds for too long. This first Lyme Doc took a leave of absence for a year (due to his own health issues) and I was forced to wait
another four months to get in to a new Lyme Literate Doc (fortunately closer to where I live). I would also like to mention that these Lyme Literate physicians do not accept insurance and most insurance companies will not cover the cost of the visits. Some will not even cover the cost of the medications (unless the physician writes it up in a certain way). Thanks to the Center for Disease Control and Prevention (CDC) chronic Lyme Disease doesn’t really exist (contrary to all proof) and a quick two week course of antibiotics will cure whatever ails you. The CDC has created a perfect excuse for insurance companies not to cover any long term treatment of Lyme Disease and has, in fact, caused many Lyme Literate physicians to be persecuted. So, anyone who has had Lyme that has gone undiagnosed for a lengthy period of time – get ready to watch those bank accounts be depleted significantly!
Having chronic Lyme Disease for almost 6 years has had a negative impact on so many areas of my life. Coming from strong, stoic New England stock, I first believed I needed to keep going no matter what. I kept working at my job as a school counselor, taking a few sick days here and there. I would come home after work each day and fall into bed, unable to even lift my head until the next morning. With my immune system compromised I was also catching any and every germ that crossed the threshold of my office door. My friendships, family and personal relationships also suffered (and continue to do so) as well as my bank account. Plans have to be cancelled and, to be honest, much of the time I am too tired or in too much pain to want do anything other than rest. Finally, after 5 years of reoccurring relapses, fatigue and horrible health I decided I needed to take a year’s leave of absence to see if I could focus on my health. It certainly seems to be helping, but I am still cycling off and on my meds and still seeing the symptoms return again and again.
I am no quitter, so you won’t see me giving up on the hope that some day I’ll have beaten this disease once and for all. In the mean time, being given a chance to be a part of this non-profit (Voices Against Lyme Disease CT) has provided me with an opportunity to help others that are struggling to overcome this disease, or trying to make sense of the baffling array of symptoms they are experiencing (which no physician can or will diagnose). I hope I can make a difference. I hope I can help someone who was just like me – in pain, looking for answers, looking for someone to listen.