written by: cyn
it’s weird to think that a whole week has passed since i wrote my last post — outta sheer anger and frustration no less.
but here i am, one week later, and i cannot honestly say i feel much different.
i am still angry.
i am still frustrated.
but at least i have an actual reason as to why.
i have lyme disease.
i think i knew i did almost all along.
and especially when on wednesday evening when i was called by an RN to let me know that my WBC (white blood cell) count was normal — indicating no infection.
hence why the antibiotic never worked on the rash i had that i thought, and was told, was most likely due to a spider bite.
(my apologies to all arachnids for blaming you unnecessarily… we cool?)
no infection added to all of my symptoms left really only one alternative — lyme.
what was most infuriating about the whole thing is that i knew the preliminary results were in and despite leaving phone messages and actually walking into the office to ask that the doctor get in touch with me — she never did.
i had to take the day out of school last friday, make an appointment, and go in face to face to find out what the fuck was going on.
and of course the first words out of her mouth were, “oh i was going to call you today after i was done with my patients.”
complete and utter UNACCEPTABLE bullshit and not what you told me on tuesday lady when you promised you would contact me with the preliminary results ASAP!
in her words, “i honestly didn’t expect you would come back positive and had to rethink giving you results without confirmation.”
yeah, you and your know it all attitude can lick me sideways!
but at any rate — i have the results and now i know.
BUT… had i not made my presence known repeatedly at that office and INSISTED on blood work — i would be one of the MANY who goes without a diagnosis and proper treatment.
having had lyme disease officially for less than a week, i am by no means an expert.
i have read a lot since last week and trust me — there is tons of information and opinions out there.
i am currently on a 21 day (which i once again INSISTED on when the doctor tried to assure me that 14 days was plenty of time — everything i had read had said 21 days MINIMUM!) cycle of doxycycline and i can only hope that i caught it early enough to not have this turn chronic (post-treatment lyme disease as it’s technically called).
from what i have read — the rash (which mine did ultimately take the form of a bulls eye — the outer edges being more red than the inner portion.) usually takes place about 3-30 days after the initial bite and looking back — it was about 2-3 weeks after i noticed the bite that the rash started.
and yes, tick bites can become swollen and enlarged — just like mine did.
so judging from that — i caught this in about two months after the initial bite.
which is good news for me!
but the the fact is this: lyme is not curable and will always be present in my body to some degree. i could be fine, or i could be one of the MANY who is plagued for life by this disease in one form or another.
the scary thing is that lyme strains get stronger which means that they become more resilient to treatment… short term treatment fails for 90% of people with chronic lyme.
scary shit yo!!!!
what i can tell you about lyme from my experience is this much…
in a matter of two months i presented a good portion of the telltale symptoms.
the bulls eye rash
lack of concentration — especially this entire past weekend which i do also attribute to trying to digest this all.
but there are SO MANY people who have little to none of these symptoms.
only about 50% develop the rash and some will go YEARS before displaying some of these “telltale signs” which are often misdiagnosed.
so in a lot of ways, i was lucky that lyme was so typical for me.
i am also lucky that my test came back positive — testing for lyme is flawed in many ways and some people never get an actual positive result and are only clinically diagnosed with lyme due to their symptoms.
so what does all of this mean?
it means that for a disease that is so rampant there is a lot of ignorance and overall BULLSHIT associated with it.
300,000 people in the U.S. alone are diagnosed with lyme every year.
and those are the lucky (i use that term lightly mind you) ones like me who are actually diagnosed.
i am not trying to scare anyone and say that every ailment out there is misdiagnosed and is actually lyme disease — but i do firmly believe, and especially after my botched care, that there has to be a better way to detect, diagnose and treat this!
what exactly? i just don’t know?
all i can do is talk about my experience and enlighten as many people as i can to just be aware… and once again, and this much i cannot emphasize enough, BE YOUR OWN ADVOCATE FOR YOUR HEALTH!
do not take for granted that the health providers always get it right — they are human and do not.
if you feel as though there is something going on INSIST on getting the care your deserve and NEED!
so yes, i have lyme disease and i can only assume that i have caught it in time — but sadly only time can tell that.
in the meantime here are some links i found really helpful on the basics of lyme disease.
peace, love and margaritas,