life with lyme

for many months i had been posting on my travails with lyme disease and my little fun co-infection called bartonella. I posted this over at another group called A Twist of Lyme, but i thought…why not share it here in case someone crosses who will find it helpful or at least supportive…

pretty typical story, and fortunate actually.

in july 2007 i was working on planting about 20 trees along the back border of our property. as i was digging the ditch for the landscape border i remember getting sickeningly dizzy and light-headed and had to lay down. i thought it was blood sugar, but now i am not totally sure that was all it was.

a couple of days later my wife noticed this massive bruise on my forearm. i did not remember getting pounded there, but passed it off to the blood sugar. the following weekend it was clear that the bruise was not going away. a small pea-sized bump had also formed in the middle and it was a distinct red color. so we started looking up spider bites online. to my jubilation it was not a brown recluse bite (talk about nasty aftermath). but to my chagrin it looked exactly like an erythema migrans. having the rash was where i lucked out.

i went to the er. the blood titer came back negative, go figure they do most of the time. but the wise er doc put me on 400 mg of doxy a day for two weeks. when i started to take it, i had mild herx symptoms and of course no one ever told me i would feel worse before feeling better.

i visited my pcp and he said that the titers came back negative so that it was not lyme in his opinion, but that he would run more tests including hiv since i was also experiencing sore throat and increased lethargy, vertigo, and concentration/memory issues.

a few weeks later i met up with my pcp. no hiv! yeah! he was convinced that i did not have lyme. i remember saying to him, "but i had the rash and numerous other clear symptoms". his response, "well, a rash can be anything. you aren't presenting any musculo-skeletal symptoms. i would not recommend seeing a lyme specialist at this point, but would recommend seeing a rheumatologist instead. it could be chronic fatigue or something else." i ignored that advice since this duck was quacking and swimming like one.

that's when i learned about the "approved" cdc clinical diagnosis and read a few studies related to diagnosing lyme and treatment controversies. aha! this is not a clinical issue as much as it is a political one. he will not diagnose because either (a) he does not know how, or (b) he cannot based on what insurance would approve.

so i scheduled an appointment with a specialist. the clinical diagnosis was positive on all tests he ran. not only a few, but all of them. round of blood tests #1 and hard core doxy was up next. this was early october of 2007.

holy herx reaction batman. i was a mess. but i followed the "feel the tingling sensation? that means it's working!" philosophy and plugged on now sure that i was not as nuts and neurotic as my pcp was making me feel.

six weeks later i went back to the specialist (dr. s. chandra swami in hermitage, pa) and all the titers came back negative which he expected. but a smear test that was sent to san jose, ca came back with a lovely little picture of bartonella bacteria stuck to the outer walls of my red cells. now i had visual evidence of the target! bastard pcp and insurance companies…

so i boosted the doxy to 800 mg/day and he put me on 400mg/day of levoquil. the latter is one hard-core antibiotic folks. he warned me that it could damage my tendons and not to lift anything heavy. of course, like an idiot, i still had a few gigs before calling it quits with my band which meant hauling my drums in and out of bars a few more times. no damage.

however, after two months i could feel my muscles and tendons degrading. my feet hurt all the time and it became almost impossible to walk without severe discomfort. after i ended my rounds, i began to feel better. i began to feel so much better that i was able to tackle some projects around the house again, i started reading books again which i had not for a year since i was so lethargic and foggy. when you are trying to write a long overdue dissertation that becomes unbelievably difficult to do.

however, over the past month or so, i have been feeling sluggish again. i cannot get out of bed in the morning and if i had my druthers would sleep several hours during the day and sleep at least 8 or more at night. i am doing cardio exercise which helps tremendously, but recovery is harder than it used to be. i am also 34 with two toddlers so i know that this plays into it as well. however, i have a sneaking suspicion that all is not well again. knowing that bartonella is a bastard, i am doubtful it is totally out of my system. i believe now in the school of thought that says chronic lyme is a myth – that it is a symptom of shit that is in your body that should not be there, but that we are not sure how to get out without killing you in the process.

so that's where i done been up in, and where i am now.

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