I have Lyme. I’d like to not have it anymore. I also just want cake.
Can we just talk about doubt? Doubt and me? Really, let’s just talk about me. Some more. But also doubt.
After becoming sick with no answers from several doctor and ER visits, I turned to google (you know you all do it). The two things that kept popping up were MS and Lyme. Uh… terrifying for a previously healthy, energetic (like literally happily jumped out of bed each morning at 7 am to hit the gym kind of energetic), never-got-sick person like myself. I was really relieved when 6 weeks later I finally got in to a neurologist and she suggested a Lyme test and a brain MRI to check out the possibilities of both. I didn’t even have to ask. Sweet. She knows what’s up.
MRI clear. Phew. Lyme ELISA test negative. Okayyyy.
Despite this, the idea of Lyme continued to nag in the back of my head. Along with doubt. I learned (from google) the ELISA test missed a lot of positive cases (was practically garbage) and that a Western Blot test was a better at catching this disease. Hmmm. A month or so later I flew back to where I grew up in Michigan, where my parents still reside, and likely where I caught this devil of a disease. I thought maybe I’d find a more Lyme-sympathetic doctor now that I was closer to the East Coast. I paid a visit to my childhood family practitioner. I asked for the Western Blot. Family doc said no, but he’d graciously give me another ELISA test to shut me up. Thankksss.
Second Lyme ELISA test negative. “So this pretty much takes care of your notions you have Lyme disease” he stated. I felt a little miffed, to be honest. Still no diagnosis. Still mysteriously sick. Still, the nagging in the back of my head about Lyme continued. But so did the doubt. Cause like really, a little tick can cause all of THIS? It doesn’t make sense, the little naggings would say, but pursue it anyways.
Around this time I watched a documentary on Lyme Disease called “Under Our Skin” https://www.youtube.com/watch?v=2JgR_Jfbhv8. I watched Mandy, a neurological basket case, as she went through her history, her search for a doctor, her treatment, and her recovery. I remember a very specific moment in that documentary during Mandy’s wedding footage where it appeared she was struggling to hide her symptoms. There was this look on her face, of fear or doom or something undefinable like that, and I instantly identified. I said to myself, in my head, “Oh my gosh, I DO have Lyme Disease”.
Doubt though, why you not die!!! Still, a quiet, small, encouraging voice remained… why you still making me fight for this!!!
I then began the search for a “Lyme-Literate Medical Doctor” (LLMD), as the Lyme community calls them. I found one in Denver. I waited 3 months to get in. He finally gave me a Western Blot. Negative – by (ridiculously narrow) CDC standards… “indeterminate” by LLMD standards. Yet, based on the test’s “evidences of antibody production against Borrelia, but not unequivocal proof”, a clinical diagnosis was made due to my overwhelming symptomatic presentation combined with a multitude of previous medical testing that ruled out several other possible diseases or physiological defects. Rationally, I knew Lyme antibody testing was unreliable and that all my “technically negative” Lyme tests weren’t to be trusted. But… it goes against everything the conventional medical institutions have taught us! *whine*. Ilads.org (International Lyme and Associated Diseases Society) states that there are no accurate tests, and specifically that “there are no tests available to prove that the organism is eradicated or that the patient is cured” (See more Lyme facts at: http://www.ilads.org/lyme/lyme-quickfacts.php#sthash.5uukv813.dpuf). Great, so as far as on paper, as far as blood testing that regular doctors have taught me to live and breathe by, I may never know if I have it, and I will never know if I’m cured. Let’s just pour a dump truck full of doubt on Tara and watch her squirm.
Regardless, my new LLMD immediately started me on an anti-microbial and anti-protozoal therapy, and I complied.
What happened next?! (I know this is a nail biter for all of you guys) I began to decline really quick on his protocol. It was the most sick I’d ever been in my entire life. “It’s the herx”, they tell me. “It’s working” they tell me. “Borrelia is dying”, they say…
So now I feel as if I’m literally dying, oh but doubt still healthy and well. “Keep going” said a voice.
My life was now filled with even more chaos. I ate something, I had a partial seizure. I got up from bed, I had a partial seizure. I walked out into the cold, I had a partial seizure. I gave a vial of blood, I had a partial seizure. I was about 98% convinced I had this Lyme Disease thing… but… *shrug*
Fast forward to getting a second opinion from a renowned LLMD on the East Coast, the one who had brought this Mandy girl back to life in the documentary I had watched months earlier. All Lyme Disease aside, he is amazing. Despite the fact that he made me give over 38 vials of blood for additional non-Lyme related testing (mostly to see if my body would be able to handle his aggressive protocols), blood draws that took me 6 weeks and 6 partial seizures to complete, he is amazing. Despite the fact he made me have gall bladder removal surgery before he would treat me, he is amazing (turned out my gall bladder had gone kaput from “infection” a long time ago unbeknownst to me). He found genetic issues that were preventing me from detoxing and were causing severe toxicity in my brain and body. This partially explained the incredible growing fragility of my nervous system – this Lyme Disease thing being the other cause. We got through the blood tests and the surgery and the supportive therapy for my genetic issues and then I bravely moved forward despite my gigantic fears of PICC lines, aggressive IV therapy, oh and, doubt. Many antibiotic cycles and months went by. Many months appearing like I was strong and sure and committed to this diagnosis elapsed.
A little baby doubt remained. Promptings to continue remained.
A few months ago, I asked him for another Western Blot. Often, once therapy has been initiated for several months, the immune system begins to recognize the bacteria and start producing enough antigens to turn back a positive test. I was ordering another test for insurance purposes, but I also really hoped for some validation of this diagnosis. On paper. From my blood. From my body. I really wanted my body to flat-out tell me that yes, there are Lyme spirochetes inside me. Aggressive IV therapy is hard and grueling and painful and uncomfortable. Not like, ugh, this mattress is too hard and uncomfortable and I can’t sleep. More like, I don’t want to be in my body anymore uncomfortable. More like, death doesn’t sound so bad anymore uncomfortable. Relentless discomfort. Day in and day out. You don’t know unless you’ve been there. My doctor’s confidence PLUS a positive Lyme test would have really boosted my endurance capacity. He actually ran two tests for me.
Western Blot negative. Lyme IFA test borderline positive.
WHAT. REALLY. SERIOUSLY. GET OUT. NO YOU GET OUT. NO YOU. SHUT UP. OKAY. BORDERLINE… I’LL TAKE IT!
(I show excitement and final redemption in a much more subdued way now since the whole sick thing)
For fifteen months I moved forward completely on faith in those teeny tiny urging voices. Completely on the quiet promptings and back-of-my-mind nagging that this was the path I needed to accept and take. I feel like I had endured a lot simply by faith. I feel like God lead me through the somewhat iffy diagnosis of a disease that is incredibly difficult to prove, with a treatment that is incredibly difficult to bear… physically, mentally, emotionally, spiritually. I don’t feel like that little Lyme IFA test validated me, I feel like that little test validated God. I am so grateful that He was mindful of ME enough to push a tiny bit harder than the strength of my doubts. It was just enough to let me choose to exercise my faith in Him while carrying my own heavy, painful, torturous, yet vague and not quite definable, cross.
Because of His guidance, I can drink water now without issues. I can walk out into the cold and shiver like a normal person instead of seizing. I can give a lot of blood and my nervous system won’t freak out over the changes in blood volume. I can wake up in the morning and the room doesn’t shake and my body doesn’t shake and my eyeballs don’t vibrate. I am mostly free from the awful experience panic attacks put upon a person. I don’t fall to the floor from sudden loss of muscle use or experience the horrific sensations of impending doom. I have a ways to go still, but I have come so far. He has led me through much healing, without telling me why or what I was healing from exactly. He asked something so simple from me – just to follow His voice. Yet it was really, really hard. It was a journey. There were no overnight confirmations. Faith is like that at times. Exercising faith during your demons, especially your long-term demons, builds you into something you weren’t before. Sometimes doubt remains for a long time and you feel like you are fighting it forever. It is human. We are human.
Keep the faith, as my wonderful mother-in-law would say. Eventually, you’ll know why.
I have a legitimate problem with really long blog posts. I am so sorry.