my life with lyme; part one
a big huge THANK YOU to all of you who have reached out to lend me some encouragement and support when i shared my lyme diagnosis last week. one thing you are always immensely grateful for as an invisible illness patient is support- when it comes. sadly, most people can’t honestly say that their support team is solid, and that is a tragedy! you are so sweet to take the time to send me a message. thank you!
i’ve gotten so many questions in the past week, its blown me away! most people want to know what life with lyme is like, how am i coping, what does this mean for me now, what supplements am i taking, etc. i’ll answer those as best I can as this journey goes on but please remember this- my journey is mine. i will be making choices and decisions based on what is best for me and my current life situation. always do your own research, ask ALL of your questions and find that peace before moving forward with anything. i am not a doctor and will not be giving any medical advice in these blog posts. however, i have come to realize that it is important to share how this disease shows in order to spread awareness and help promote healing. someone very wise told me last week, “as a health coach, you’re a leader in health first, before anything else.” how true!
that being said, i’ll take today to answer the question i’ve gotten most—how am i doing since i got my results?
in my video last week i mentioned that i was not shocked to get my positive results. there were several reasons why:
1. my doctors had prepared me well for what the test would look for and how my symptoms were matching up with lyme disease and its coninfections, even after i have spent the last 9 months thinking i was in the beginning stages of MS like they originally thought.
2. i did my own research from all kinds of angles to see if i could come to the same agreement they had. bottom line, once i started reading, it all fell into place. the more i searched before getting the test, the more i knew in my gut that this was my root diagnosis.
3. i didn’t get the igenex test kit ordered until i was sure i was ready to go down this path. let’s be honest, there have been dozens of tests. there have been monthly blood draws and urine tests, all kinds of radiation exposure and multiple heart monitors, tilt table and physical therapy maneuvering. i didn’t have it in me to keep testing without having a clue what we were looking for. i didn’t want to spend more money on theories, i was emotionally done. ordering the test kit and getting the required bloodwork was me reaching the point where i had to know, one way or another, if this was lyme. i made my peace with the possibility it could be negative and i still wouldn’t have an answer. but as i said, in my gut, i really felt like this was it for me and i had to know.
we originally made the decision to get the test at the beginning of may after talking it over with 3 of my doctors. i had just had a procedure on my spine and recovery was much tougher than anticipated. a few errors with the kit itself happened and before we knew it, it was july. my lab was happy to draw the blood for free but I could only come in for it during certain times. matching those times up with when i knew the bacteria was out in my blood and replicating was tough. (that was my hangup, not something the doctors advised. i wanted to make sure they drew the blood during a time i was very symptomatic in order to get as sure of a results as we could.) i took the resistance as a sign i was on the right track and didn’t let it get me down. as time passed and my treatments continued, new symptoms started and i knew i was headed in the right direction.
by the way, shout out to igenex for great customer service. they called me when my kit arrived, verified my information and asked if i wanted a copy of the results myself. i said yes and they informed me that within 13-15 business days i would have them. i started stalking my poor mailman on day 12 in hopes of early news but it took 3.5 weeks. just when i had finally given up and told myself they would come eventually, they showed up a couple days later. (on the bottom of a very big stack of mail of course.) i almost missed the envelope!
opening that fat envelope and seeing all the pages inside made my stomach just drop. lots of info is always a good sign, but in this case, you don’t want lyme to be complicated. i was shaking all over. in the end, it was only the results of my coinfection panel. thankfully, because of my education as a health coach and from working in the lyme world these past few months, i was able to interpret the results myself. at my next doctor’s appointment which was three days later, they confirmed it.
so what’s next? that’s a good question. thank God, i am already responding to the treatment protocol i am already on. the neurofeedback is really starting to kick in and i’m seeing a lot of results after those sessions. my nutrition is good, i’m starting to notice more energy. the supplements i’m on already are known to be fantastic support for lyme patients — how amazing is that? what a blessing. there are still a lot of questions to be answered but in the meantime, i have begun looking for a lyme literate doctor. they’ll look at my history, results and symptoms and present treatment options and we will go from there. I plan to use an integrative approach but if there’s anything to learn it is that there is no plan for lyme. It will change and we will have to adjust.
there’s a long road ahead. i know that. it’s already been too long. but i’m still here and i’m still fighting. my dragon has a name now. i am a warrior. i refuse to let this disease win or define me. for the sake of my son and all my loved ones, i have to keep fighting. i’m not giving up yet.
my life with lyme; part one