Time to put everything down, and so this is my first post about lyme. Lyme and me. It explains how I discovered I was infected with borellia. My lyme storey is, like everybody else’s with this illness, long and complicated.
I do have a blood test, through Igenex, that says I am positive for Lyme, aka borellia. It didn’t take me as long to get diagnosed as many others with this illness. The reason I found out what wa making me sick within a year from when my quest began is that I was “lucky” enough to have had two typical bullseye rashes.
I didn’t think anything of these rashes, I just figured they were some weird insect bites and forgot about them. Insects love to bite me. In fact, my husband jokes that I’m a natural deterrent: If I’m out on the porch, I keep everybody else safe from the bugs because they come and bite me. Hahaha. Funny.
Flash forward a couple months after I noticed the bullseye rashes. It’s hard to remember exactly what symptoms came in which order, but the one that really made me take notice was recurring headaches. During the christmas holidays, I had a headache almost non-stop for two weeks. I went to the doctor, who attributed it to stress. “But I wasn’t stressed during the holidays”, I protested, “I enjoyed them thoroughly.” He assured me that christmas is stressful, even if you don’t actually feel stressed.
Another issue that occurred at about that time was TMJ – my jaw clicked and clicked. It got so bad, I could barely chew my food. My mentioned it to the dentist while I was in having a root canal (Three cavities – that was another suspicious thing). He thought it was my bite, so he ground some off my incisors to let my bottom teeth fit nicely behind them. It didn’t resolve it, in fact I think it made things worse. At least things did worsen to the point I couldn’t open my mouth more than an inch, lest I trigger the big “pop!” and pain. Yawning was a bitch.
And another issue occurring in this time frame was lower abdominal pain. It was actually more of an ache that felt like menstral cramping. It lasted for days, until I finally went into the doctor to check it out. He took a swab. Turned out that there was some overgrowth of bacteria of a kind that is normal to have. He didn’t know if it was the cause of the ache and decided not to treat it with antibiotics.
The TMJ resolved itself, I think because I stopped yawning with my mouth open and was very careful with my chewing! The abdominal pain went away and only recurred a couple times, neither time as acute as the first episode.
Fast forward to February, when our family all came down with a flu. Both my husband and I were horribly, debilitatingly fatigued with it. It felt like we were wearing suits of lead. The difference is, his resolved and mine didn’t. The fatigue set in and it still hasn’t left.
It was the fatigue and the headaches that sent me on a quest to find out what the hell was wrong with me. I went in to see the doctor about the debilitating fatigue. He talked about possible CFS (chronic fatigue syndrome), perhaps fibromyalgia and something he called partially treated depression. Huh.
I told him that I didn’t believe in CFS or fibromyalgia, that I thought those were symptoms and not diseases. I said that I figured something was behind them and doctors just didn’t know what.
I also told him about other physical things happening to me. Irregular heart beats (skipping beats), twitching eyelids, periodic blurry vision and about one time I woke up to find my eyes rolling back in my head and was not able to keep them from doing that! The eye rolling thing also happened a few times after waking up, lasting only a few minutes.
His answer was cut back on coffee for the heartbeats, didn’t respond about the twitching eyelids or eye rolling, and marched me to the eye chart to check my vision. It was like he was groping for something easy to explain away the growing variety of symptoms I was experiencing. He also, curiously, told me not to read things on the internet. What the hell?
Typing my symptoms in google, which I had been doing for some time, lyme disease repeatedly came up in the results. I dismissed lyme because every page on lyme said there was a rash involved. I didn’t consider what I had to BE rashes. I was convinced they were spider bites! Finally, after the latest futile trip to the doctor, I took a look at pictures of these so-called lyme rashes and almost fell off my chair! My rashes were just like the pictures I saw. They were classic Erythema migrans, the technical term for them. I had lyme!
I was so excited about my discovery! Now that I knew what was wrong with me, I could get treated and get better, right? Well, that’s what I thought, but my excitement was short lived. It’s not like that.
I called the doctor and left a message, that I had rashes typical of lyme. He never called back. I made an appointment and went in to see him. I told him about the rashes. He repeated stuff about the depression, fibromyalgia and chronic fatigue but agreed to a blood test for lyme. It was, predictably (I now know) negative.
Getting officially diagnosed is nearly impossible in Canada. Getting treatment is possible, but only through naturopathic doctors and out of pocket.
Lyme is not a simple disease to have, and this is just the tip of my storey’s iceberg.
Diagnoses so far:
Stress – depression – chronic fatigue – fibromyalgia.
How long have I had this? I thought for less than a year, but, boy, was I wrong!