I Have Lyme Disease: My Diagnosis story
First off, thank you for being so interested in hearing my Lyme story. It's been an interesting journey and fortunately my diagnosis came a lot sooner than most. I count my lucky stars that I have been diagnosed relatively quick after experiencing the height of my symptoms (so far) and I'm also super grateful for the outpouring of love and support from my friends, family and community. I'll be writing more about this journey because its now a part of my every-day life.
When everything went south last year, my doctors couldn't figure out what was happening, I chalked it up to a slipped disk in my back. My office chair is the worst and I knew from teaching yoga so much I had a hyper-mobile coccyx from over-stretching and sitting on hard blocks. I was convinced that I needed a massage therapist and an Osteopath (the original chiro) and I would be back to normal. My first ER doctor looked at an old x-ray and said it wasn't a slipped disk and that it was probably just stress or a vitamin deficiency and to just ignore the strange sensations in my body and to maybe get physio if my back was bothering me, I was miffed. I have to ignore the fact that I feel like I can't feel my legs, had strange pelvic pains, or struggled to walk down the stairs? I was losing the feeling in my feet for months, it started in my toes one day at a photoshoot and began to climb up my body. I remember one day where it was creeping up my legs in to my pelvis but I just thought it was just bad circulation from too many hours editing and again- the terrible office chair. I also had strange migratory pains, spasms and twitching that could jolt my arm, arthritis in my hand, cognitive difficulties and extreme fatigue. I just kept blaming wedding season! lol
It wasn't until I saw my Osteopath (I recommend Intrinsi) that I started to realize there was much more going on. He was the first one to realize that it was so much more than back pain, he made me keep a symptom journal of my neurological symptoms and paraethesia (pins and needles all over the body, it can also feel really itchy) and he was the first person to ask me to walk through months of symptoms to see how it was all progressing. After a week he urged me to go back to the ER and seek a specialist, "You have to tell them that you need an MRI." My heart was pounding in my chest. It was not a slipped disk after-all and he didn't want me to come back. I was left out on my own.
During this time life was still going as normal and I was just learning to deal with the symptoms on an everyday basis and I was recording my first season of the Made True Podcast. It wasn't until I chatted with my friend Nicole who has Lyme for the whole 30 episode that I played with the possibility of it being Lyme Disease which I didn't know anything about. Our symptoms, especially our neuro-symptoms, were uncannily the same so she urged me to find a Naturopathic Doctor in my area who would request a Lyme test out of country while I waited for my MRI which would take up to 6 months to receive. Canada's blood test is flawed and outdated and depending on your GP you may be hard-pressed to even get a requisition to obtain one. At this time my doctors were just saying my symptoms were likely stress related, a possible vitamin deficiency (even though I was the healthiest I have ever been in my life), or maybe...just maybe... the beginning stages of Multiple Sclerosis. But don't panic- it's probably just stress. lol
I found a wonderful ND at that time who when I sat down with didn't deny the possibility of Lyme Disease and worked right away on drawing blood for my first blood test: we would test for Lyme (Borrelia Burgdorferi) and also take a panel on my immune system at a lab out of Germany. At this point my neuro symptoms were getting really bad, I was in constant pain, felt like electricity was running through my body and couldn't sleep because of the random twitching/spasms my body would experience. I was fully convinced that it was MS but hoped for Lyme Disease (because I thought it was cure-able.) A little education for anyone who may consider blood tests: Lyme is a spirochete bacteria/parasite, once it drills itself in to your tissue, bones, organs, it escapes the blood stream away from your immune system and is no longer detectable by a blood test. So you can have Lyme disease without a positive blood test. The longer you have had the disease the more likely it has imbedded itself in to your body and has created a biofilm or cyst formation to protect itself. It can even be dormant for years. Getting a diagnosis of Lyme Disease is now more of a clinical diagnosis based off of symptoms since a lot of people will test negative. But if its active in your blood stream, aka moving around in your body, you can get a positive blood test which is awesome! And really helpful!
The good news is that something did come up on my MRI while I was waiting for my first blood work with ArminLabs. I could breathe knowing that it was in-fact not anxiety and that there was something attacking my brain and causing the strange symptoms all over my body. My ER doctor said I potentially have 'Atypical MS' because I have multiple lesions on my brain but the test was technically inconclusive on a 'Multiple Sclerosis' prognosis due to the MacDonald Criteria. -Basically a bunch of doctors say you have to have 'so many' lesions in more than than brain so somewhere else in the CNS like your neck or spinal chord- But here is the thing... they never tested my whole CNS (Central Nervous System) so I have no idea how they can even try to give me any type of prognosis if they don't run all of the tests needed to make one. They only scanned my brain and since I have had mobility issues you would think they would have tested my spine? Anyway, I think, now this is just conjecture, its because my second ER doctor was convinced it was just stress, this is the bad thing about having previous anxiety attacks and my GP put in my chart that I am a hypochondriac. Once you have anxiety, doctors think everything else that happens to you is the result of stress. Basically saying 'its all in your head' or psychosomatic. It didn't matter to him that I hadn't had an attack for years, he thought stress or vitamin deficiency like the last doctor but to be 'safe' he would run an MRI. Ok back to Lyme- After I got the call about the lesions. I cried my eyes out, of course. I was now on the list to see a neurologist and see the MS clinic for further testing. My fears were coming true and I was terrified.
Two days after the call from my ER doctor about MS, my ND revealed markers on my first immune system blood panel for infections in my body and an immune system that was struggling. I didn't even realize that my lymph nodes were chronically swollen. I guess I was just used to it. My Lyme test came back as a 'weak positive' so in lab terms they would say that's more of a negative. At the time she said I didn't have Lyme but that there was definitely some type of chronic infection, I got in my car and cried. It meant the likelihood of MS was a real prognosis for me and I was waiting for the MS Clinic to learn more which could be a year or longer. My ND, after chatting with her colleagues, pressed me to take more testing to see if I had co-infections, ticks (mosquitos, mites, flies, etc) carry a host of different parasites and bacterias. Also if its chronic lyme disease (late stage) its no longer active in the blood-stream but has hidden in to the tissues of the body which would create a false blood test. This meant a lot more money to the German Lab. Note: My ND doesn't make a profit from the blood test. Landon and I felt like we were still in limbo since we were told it would be a year or more for the MS clinic and so I decided to just go for it even though it was a bill we weren't prepared to pay for. We knew there was an infection by looking at my blood and it would be nice to have some type of idea on where to start for treatment and my GP didn't take notice of anything strange going on in my blood except for a vitamin D deficiency (seen a lot in MS patients) and low iron levels/anemia (which I have struggled with majority of my life.) So anything- seriously anything to help tame the symptoms was a go-ahead for me.
A few weeks later, it was confirmed, Lyme disease with multiple co-infections. I am lucky to be diagnosed and within a decent time span (it only took 7 months thanks to the support of my future husband and my restless attitude towards my health). Im so so grateful my ND was adamant on the extra blood tests before my neurologist decides to put me on immune suppressers; which is supposed to slow down my immune system from attacking my brain. The idea here was treat the infection before the Immune suppressers were introduced so I could fight off the infection before it got worse. I'm glad we did the extra testing because it gave me an answer and a treatment plan that didn't require waiting to get worse. Basically with MS they wait till you have another attack or episode which likely results in temporary blindness and/or some type of mobility issue. Like the time where I lost the use of my left arm and didn't go to the ER. (If this happens to you, any limb, please go, get it on file! I may have gotten a proper brain scan if I had gotten it checked out.) Waiting to get worse sounds wonderful, doesn't it? Haha I was so paranoid about driving and I dreaded going to sleep at night constantly wondering, will I wake up blind tomorrow? Will I wake up and not be able to get myself out of bed? What if I can't walk one day? It was so scary and some days it still is to think of another episode waiting to happen.
This is all still so new but we know that my Lyme went undiagnosed for a long time and was fairly dormant in my body. My dad told me that he pulled off two ticks from me when I was younger but other than that I have no recollection of ever being bitten or having the classic bulls-eye rash. This is the majority of cases. I am now considered stage 3, chronically ill, with an auto-immune disease. Auto-immune meaning: My body, doing its job, unfortunately attacks my brain when trying to respond to the infection/invader causing the neurological auto-immune issues that I find so mentally and physically debilitating: aka the MS symptoms. Lyme is tricky! If you catch the bite early you can go on antibiotics but when it is late stage, you are in for a lengthy and expensive ride of treatment. When a bacterial infection crosses the blood-brain barrier, it can create a lot of neurodegenerative diseases. As research progresses, mostly from Europe since the political climate of Lyme in North America is interesting, we are starting to see that neurodegenerative disease like Alzheimers, ALS, Parkinsons, MS, and more, likely stem from vector borne disease that have infiltrated the blood-brain-barrier and making people very sick.
Treatment! I'm on my first treatment protocol. Late stage means I will be treating this disease for at least a few years. I am on the waitlist for the Lyme Literate Doctor (LLD) here in Calgary but I am unsure if his protocol will even be what I want to do. I'm pretty sure he puts you on antibiotics for months possibly years and that's pretty damaging on the body. It's also a year to a year and half wait to see him. I can't get a referral to any other western doctor in Canada because their wait-lists are too long and they can only focus on people in their region. There aren't enough doctors in Canada to treat Lyme so I am starting with the natural route, paying out of pocket for my treatment care with my Naturopath (diet, supplements, tinctures and herb medicine), Bi-weekly IV Therapy (Artesunate/Parasite IV (commonly used for malaria) with an Immune Boost (vitamin c)), and Acupuncture (help with detox). They say on average a Lyme patient spends about $56,000 on treatment a year (even more in the US) and a lot of them- when they become late stage become bed ridden or unable to work. Which begs the question, how do they pay for treatment then? I thought there was no way that number could be real but in two months, I have already spent a few thousand dollars on blood testing and treatment. I am so fortunate that I can keep doing what I love, that I am not bed ridden, and that I am managing my symptoms and taking it day by day. I am doing a lot of research and trying to educate myself. If you want to learn more I recommend watching the documentary Under Our Skin. There are A LOT of bad information out there on the web but also some good stuff too. You have to be very careful on where you get your information from because Lyme Disease is so widely controversial. I'm surrounding myself with other #lymies who are positive! There are a lot of doom and gloom cases out there, especially on Lyme Disease forums, and its far too overwhelming to take my mind there. I really think keeping a positive mindset and a healthy lifestyle will help me stay on top of this disease while I manage treatment.
I don't look sick
I won't ever look sick to you, I will likely always look very normal. I'm fortunate enough that I can still walk and that my twitching and other neuro symptoms are generally pretty unrecognizable to most. I feel like people can see it because its so pronounced in my body but Landon can't even see it. He sometimes feels a twitch but thats about it. I work my weddings and interior design shoots perfectly normal some days and other days I am in pain or can't feel my legs or arms but you would never know. You just push through. You kind of get used to it, or at least I have, its the new normal. I don't openly share what I am experiencing with people as its not exactly relatable!? Lol so yeah... life goes on.
I'll be posting more about this journey. If you have any questions regarding Lyme, let me know, you can comment below! I was going to write out the ginormous laundry list of my symptoms as that was what I found helpful in the early stages when trying to figure this all out, if thats something you want, let me know and I will make it happen! Thanks for reading!