Like many people, I only recognized my first steps into the Lyme world well after-the-fact. And like many people, those steps began in a weekend filled with the pleasures of the outdoors.
Memorial Day weekend 2011, the WOW weekend – it was my first experience with the self-proclaimed Women of the Woods after a glorious weekend of camping, hiking and canoeing in the Delaware Water Gap in Pennsylvania. I greatly enjoyed getting to know my neighbor better who had invited me along and was delighted with the fun adventure of meeting a group of fascinating women (the WOWers) and exploring a beautiful national recreation area for the first time.
Upon waking on Tuesday morning reluctantly getting ready to step back into the “real-world”, I noticed a strange series of three bites with a purple-streaked rash on the back of my shoulder, along where my tank top arm hole would have been. Knowing for sure it wasn’t caused by a mosquito or black-fly bite, I scheduled a visit to my doctor’s office just in case it was a tick bite or infected spider bite. After looking at the bites with a magnifying glass, the ARNP who was doing same day visits said she didn’t think it was a tick bite and sent me on my way.
The purple rash disappeared and I forgot about the bite until nearly three weeks later when a circular bulls-eye rash appeared. Knowing the strong possibility that this could be a Lyme rash, I took a trip into the walk-in clinic to take care of it ASAP. The doctor on call confirmed the rash as Lyme and offered me a choice of two different antibiotics. I chose the one that would allow me to still go out in the sun and went on my way assuming all would be well . . .
Note: I’ve sense learned that being prescribed 2 weeks of Amoxicillian is both unusual and woefully inadequate. The more typical treatment is 3 weeks of Doxycyclin which is the first antibiotic of choice. For my situation, given the amount of time that passed between the bite and the appearance of the rash, I should have been offered a minimum of 6 weeks of antibiotics and probably 3 months because of pre-existing autoimmune conditions. (Dogs are routinely given a full 30 days!) See ILADS Treatment guidelines.
I also learned that ticks are very common in the Delaware Water Gap and a high percentage of them carry Lyme Disease.
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I’ve only just read this post. What a nightmare with your doctors!!! Maybe your experience will help others to recognise the bites and get the proper antibiotics on time? Maybe you could reblog this post, or update it with pictures of typical bites, and some pictures of the tell-tale Lyme disease infection marks?
I have learned through experience to always get the second opinion of my own doctor, if the first doctor I see isn’t my own one, and I don’t get better within a few days, or I am unhappy with the diagnosis. Only recently I was diagnosed with sinus pain in my right sinuses, and given medicine for that, when in fact I had neuralgia. When I ended up practically on the floor in my own doctor’s consulting room in tears with the pain, he realised straight away, that while I have ongoing problems with my sinuses, this was nothing like sinus pain & instantly changed the medication and got me back to a position where I could function again!
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It truly is a nightmare that I wouldn’t wish on my worst enemy (if I had one!). I like that idea about another post about recognizing the bite and what to do. What I get around to drafting it you will know it was your idea!
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I look forward to reading it – I will be glowing with inner pride 🙂
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