You may have already have a clue what this post is about based on the title.
First, an apology for my long absence. I’ve been dealing with some medical issues.
Second, a warning. This is a very long post, get comfortable.
Third, I will be creating a new section on my website specifically dedicated to my journey with Lyme Disease. My posts might be scarce as I am going through a lot lately, but I intend to keep it up to date to educate people, create awareness and discuss the role of nutrition in chronic disease.
Fourth, I am open to media inquiries. This disease needs to be recognized and talked about.
What is a diagnosis worth?
Today is January 16, 2016. So far this year I’ve had a total of 16 needles stuck into my body. That is 1 per day on average.
As I write this, to date I have seen a total of 12 doctors, that is not including follow-up visits and repeat ER visits since September 2014. To date, I have travelled 5356km to visit doctors. Next week I am travelling another 708km to visit yet one more doctor, making that lucky number 13.
My symptoms started in August 2014, about 2-3 months after I woke up and found an unknown insect bite. I went to the Clinic and saw a Nurse Practitioner who thought I had been bitten by a spider. I was given ointment and sent home.
Between August 2014 until June 2015 I experienced joint paint, flu-like body aches, muscle weakness, swollen lymph nodes, re-occurring sore throats, and was becoming increasingly tired. I was told I had tendonitis.
In March 2015 I was referred to a rheumatologist who I saw in June 2015. After this visit my next diagnosis was palindromic rheumatism. A week after seeing the rheumatologist the joint pain, at times accompanied by swelling which had become so bad in my wrists that I had to take a week off of work as I couldn’t even hold a pen and it had become extremely painful. I personally purchased $200 dictation software to try to make work easier, as I do a lot of writing and typing. The rheumatologist suggested NSAIDs; which I quickly found out that I’ve developed a potential life threatening allergy to.
Throughout summer 2015 I had increasingly worse pain and swelling in my joints, my knees, ankles, hips, SI joint, shoulders, wrists, elbows, neck and TMJ. In October I started getting fevers every one to two weeks, and developed what I thought was chest pain related to the anxiety associated with being in extreme pain some days. I never mentioned this chest pain to anyone, including any of the doctors. I strongly believe in not taking medications unless 110% necessary, and I feared that telling a doctor about this chest pain would result in it being suggested I take anti-anxiety or anti-depressant medications. I didn’t need to supress any anxiety; I needed to know what was growing increasingly wrong with me. It was at this point at one of my doctor visits during a routine physical that a heart murmur was found. Given my symptoms, this doctor thought perhaps I had rheumatic fever.
At the end of October 2015 I asked my doctor to check for Lyme Disease. I was told it was unlikely, as I didn’t have the “tell-tale bulls eye rash”. Sure enough the ELISA test came back negative the first week of November. After 14 months with no answers, my husband and I decided enough was enough – we needed answers. I made an appointment at the Mayo Clinic and was scheduled for January 4th.
Midway through November 2015 my symptoms became aggressive. I stopped walking my dog, as I was so easily out of breath and it was harder and harder to walk normally. The chest pain increased significantly. It became difficult to walk down the stairs, I felt as though my legs would give out at any second. I was losing strength by the day. Some nights were so painful it felt like I was dying a slow death. On November 25th I went to ER after 3 days of the worst chest pain I’d experienced yet. I told the doctor my history, and he said perhaps the inflammation I’d been experiencing in other joints was also in my ribs. He also mentioned the possibility of rheumatic fever.
Days go by and I am crawling into and out of bed. Barely able to stand straight. My muscles are so weak that I have now found myself doing a ‘bear-crawl’ to get up the stairs, while I hold on tight to make my way down.
On December 8th I found myself in ER yet again. This time a diagnosis: rheumatic fever. I was told to take antibiotics for 10 days, and was put initially on ASA (yes, a NSAID) for inflammation. The dose on the ASA was so high that I needed to take 24 tabs per day, which I never was able to attempt to work my way up to as I was called to have an upper endoscopy done and was not allowed to take ASA due to risk for bleeding. I was then put on cholchicine for pericarditis, even though there had been no imaging studies done yet of my heart.
On December 18th I had a scope with multiple biopsies taken. After all of this, I had been counting down the days until I could go to Mayo and get answers. I am in pain, barely move, hardly leave my house, and have now been off work on short term disability. I haven’t slept since mid-June, when I do there are times that I cry in my sleep because I am in so much pain. I’ve also started to develop anemia.
We welcomed 2016 joyously, January finally arrives! My husband and I pack up and drive to the Mayo Clinic in Rochester. I can’t say anything bad about Mayo; they were efficient and ruled a lot of possibilities out. We got further at Mayo in four days than we could have gotten at home in one year. This efficiency comes with a price though, a price that exceeds $35,000.00 which as many would agree, this is a lot of money. We asked again at Mayo, “could this be Lyme Disease?” and I was told “you don’t have the symptoms of Lyme”. I left Mayo still undiagnosed, I was told I may have a “brewing autoimmune process” and it was suggested that if my symptoms continued I should start steroid therapy and immune suppressing medications.
Needless to say, when you travel to the one place everyone swears is the Holy Grail of hospitals – you go expecting a diagnosis. Especially when the price tag is so high. I am a woman who prides herself on her strength. Prior to falling ill I was a runner – I ran three half marathons in six weeks a couple of years ago, because I was stubbornly trying to achieve a time goal. I lifted weights, heavy weights – to prove to myself and anyone else around me I was the girl who could curl a 40lbs dumbbell. I was also the girl who could do chin ups. I had the physical and mental strength to push myself through anything – so to be told, “objectively, we can’t find anything wrong with you” … I was devastated. I was angry. I felt hopeless. If the doctors at the Mayo Clinic can’t help me? I was terrified that no one could.
The night after we got back home from Mayo my husband started to look more in depth into Lyme disease. At this point, we started to learn the controversies and political fire related to this disabling disease. The disagreement throughout the medical community is clear; I’ve experienced it in the many conversations I’ve had over the last 16 months. We’ve learnt that the ELISA test can produce a false-negative up to 50% of the time. The better test for Lyme is a Western Blot test; but in many cases (including the Mayo Clinic) the Western Blot test is only ordered after a positive ELISA test.
Once again we’ve had to take matters into our own hands. I ordered a complete Lyme test kit, as well as a test kit for co-infections from a laboratory in California named Igenex. It is the most recommended lab for its comprehensive serological testing for Lyme and co-infections, again – this comes at a cost. After I shipped my blood to California and paid for the lab work, the total was $1800.
We’ve done a lot of research about Lyme by this point. I’ve found Dr. Richard Horowitz’s book, “Why Cant I Get Better” – it has been a great resource, as well as Canlyme and ILADS. Dr. Horowitz developed a screening tool to help categorize symptoms and rate them. My score was 99.5, a score of 46 or more notes “you have a high probability of a tick-borne disorder”. I then gathered lists of Lyme Literate Doctors from Canlyme and ILADS and I work deciding what doctor I feel comfortable with; there are many treatment centres for Lyme – some have a cookie cutter approach and cost upwards of $50,000 USD, some practitioners offer treatments I personally don’t feel are safe. Lyme can sadly be a lucrative business. After two weeks of researching doctors, I decide on Dr. Joseph Jemsek and book an appointment in March based on our assumption that I might have Lyme disease.
January came to an end with 13 doctors, I mention the insect bite, but no one seems to find there to be any correlation. I asked “isn’t it possible whatever bit me transmitted some kind of bacteria or virus?” January also ended with 23 needles. Everything from blood work, muscle and nerve function tests, a bone and joint scan, a MRI, a CT, multiple EKGs and echos, xrays, and a bone marrow aspiration and biopsy. Many of these came with my favourite thing of all: an IV. Truth be told, I would rather have a bone marrow biopsy than an IV.
By this time the fevers are constant and I start developing new symptoms – more neurological ones; I completely lose my ability to walk, sit up, stand, lift my arms, legs or head. These symptoms come and go, with no rhyme or reason. My husband, bless his heart, has been amazingly supportive – you know you are loved when someone wakes up in the middle of the night to turn you, to take you to the bathroom and tilts the glass up for you so you can swallow your pills. I’ve been prescribed steroids, being told they will at least alleviate my symptoms – but I refuse to take them. I knew, deep down in my gut, I did not have an autoimmune disease. Taking steroids, if I did indeed have an infection would have been a really bad idea (as would those immune supressing drugs that the doctor at Mayo suggested). I wasn’t ready to take drugs that would supress my immune system when it needs to fight off what I assume might be the bacteria that causes Lyme.
What have I learnt so far? A lot. Just a few of those lessons:
True love is limitless and will get you through anything,
Faith isn’t optional and when you’re open to it – the world will give you what you need,
Nothing is random,
Appreciate everything, even the “bad” things,
Never feel sorry for yourself,
Money doesn’t buy health or happiness,
Eventually, you’ll make more money again – money isn’t everything,
We take our bodies for granted until we can’t use them anymore and we’re in agonising pain,
I have a surprisingly high tolerance for pain (bone marrow biopsies are supposed to hurt, a lot), and finally,
Trust your instinct.
February brings with it a four-day hospitalization in Thunder Bay, four-hours away from Home. I’m in the care of Dr. Malik, he is the doctor who did the bone marrow biopsy and I can’t leave his name out of this because he has been one of the best doctors I’ve seen. He reminds me a little of “Dr. House” (the TV series) not as ornery, but incredibly smart. For the first time a doctor looked at me and saw that I was falling apart and something was absolutely, indeed terribly wrong. While admitted in the hospital my count of doctors rose to a total of 18 – they discussed doing a lumbar puncture (a.k.a. a spinal tap), but luckily for me I evaded this procedure. Still, no diagnosis. Dr. Malik is one of the few doctors who hasn’t looked at us like we’re nuts when we bring up Lyme Disease. Throughout this we’re still waiting for my blood work results from Igenex to come back.
The doctors are stumped; one of them actually told me this as he tossed his hands in the air and walked out of the room. My markers of inflammation are high, the anemia is getting worse, not only do I have fevers, my temperature will drop down below 35C, sometimes as low as 33C. I’ve had two episodes where I completely lost my ability to breath for a moment. I remain in relentless pain. Yet again, new and worsening symptoms start. I start to get burning sensations in my face, down my spine and throughout my body, it feels like fire and ice. I begin to experience large twitches, throughout my whole body and in my face (I imagine they look something like a scene from a scary movie when my body thrashes the way it does). These ones scare me a little, but I push through it – exhausting as it is – I push.
March 7th arrives, I get a phone call from my doctor with the lab report from Igenex. I tested positive for Lyme, even by the CDC (Centre for Disease Prevention and Control) standards. I also tested positive for Bartonella, one of the co-infections, which makes this an even more complicated case of Lyme Disease. I am thankful I was prepared for this, and that I already made the appointment with the Jemsek Specialty Clinic. I know the road ahead is long and will involve one – to – two years on antibiotics and other natural, herbal remedies to kill this awful bacteria and to help repair and support my immune system and the rest of my body.
Lyme Disease affects all body systems. The bacteria is actually impressively smart. From a scientific stand-point, you have to be a little bit impressed by its ability to change its form and drill through any tissue in the body. There is a lot to learn about it – I highly recommend the documentary “Under Our Skin”, it can be downloaded through iTunes (and is also on the android TV boxes). Other great resources are the Canadian Lyme Disease Foundation (canlyme.com) and the International Lyme and Associated Diseases Society, ILADS (ilads.org). There needs to be more awareness. It is critical to the health of our population; numbers of Lyme Disease cases are going to rise with our increasing temperatures. The following is data from our local Health Unit:
87 ticks were submitted to the health unit in 2014. About 42% of these were wood ticks and 43% were black-legged ticks, which are known carriers of Lyme disease. There were 3 instances in 2014 of black-legged ticks that were positive for Lyme disease, in Dryden, Sioux Lookout and Fort Frances.
Please educate yourself, protect yourself and know what to do if you do have a tick on you. Had this been recognized and treated right away with 14-21 days of antibiotics when I was bitten – I would have most likely been fine. Instead, today I write this as a person who has Chronic/Late Stage Lyme Disease and a Bartonella infection.
I look forward to this journey; it won’t be easy – but the best things in life aren’t. I am going to continue to embrace this for what it is. Life throws us challenges, and it is our choice if we are ready to learn from them or not. Bad days literally feel like you are on your death bed. I’ve absolutely had moments where I thought “this might actually kill me”. Once I am healed, it will be a second chance at life. To be honest, I am so unbelievably thankful for this – for without it I don’t know if I would move forward and have the appreciation for my life and my health the way I will now. From here I stop counting the dollars spent and miles travelled, partially because I know we are nowhere near an end and that Lyme is a costly disease. But cost doesn’t matter, quality of life matters.
Our next stop
Washington, DC to the Jemsek Clinic on March 16th. I have every intention of pushing through this trip – and making the best of it. I look forward to treatment, even though it will hurt even more. This is life right now and I am going to do my best to embrace it. I even intend to climb, or if necessary have my husband carry me up the stairs to the Lincoln Memorial and experience as much of Washington as I can handle, and then some.
PS – can I mention that irony in the fact I am a Registered Dietitian and that I love food, and it just so happens I contracted a disease that is called Lyme? (If you really wanted to know the origin of the name it is from a town called Lyme in Connecticut. The bacterial that causes Lyme Disease is Borrelia burgdorferi, but that is only one of the couple hundred strains that exist worldwide.)
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