chronic lyme disease with a taste of nut
Because I have yet to visit a Lyme Literate Medical Doctor (LLMD) and receive all the lab tests measuring heavy metal toxicity, autoimmune issues, endocrine problems, lyme co-infections, and more, I don’t yet know when the beginning of my story started.
I had GI issues since a child but it was in the early 2000’s when I noticed muscle pain. I had two “bouts” of “Fibromyalgia” in my hands – one in 2004 and the other in 2009. It made it horribly painful to write, which concerned me a lot, but after a month or so it mysteriously disappeared.
In 2012, my husband surprised me by getting tickets for him, my oldest stepdaughter (then 13), and myself to go to Honduras to visit our sponsor child, volunteer at a rural school, and have adventures ziplining, caving, and white water rafting. While that trip was a momentous, life-changing, positive experience, I now believe that I may have come home with a parasite. All three of us got a stomach virus near the end of our trip and were quite sick. It cleared up, though, so we chalked it up to normal traveler’s sickness. Not until 2015 did I consider that something in my intestines could have started the mass breakdown of my health.
Between 2012 and 2014 I was a frequent visitor at my primary health care clinic. I bounced around between doctors, specialists, and urgent care – with a couple of emergency room visits thrown in for good measure. I was having massive GI issues which resulted in a colonoscopy, CT scan, colonography (horribly painful!), and colon transit test (there might have been others, but I forget). All tests were “fine.” All the lab work my doctors did was “fine.” But I kept coming back with new complaints.
I tried various diets – no gluten, no dairy, no sugar – and failed abysmally. I was even put on the 1972 Atkins diet by my GI specialist and that ruined my gut. Between 2010 and 2014 I lost 80 pounds – for no other reason than stress and illness. While my diet did change a little, I was never a junk food lover so my eating habits didn’t change to cause an 80 pound drop.
The Perfect Storm
The summer of 2014 brought new issues and is what I call, “the perfect storm…” if you define perfect as being horrible and awful and something you wish could be eradicated from existence.
July 2, 2014 I got a viral outbreak on my sacrum. We went to the doctor and she thought it was shingles. It wasn’t shingles, but something similar. I was given antiviral medication and told to rest. What happened next would change things forever.
My legs became extremely fatigued and pained. It felt like electricity spiked down the backs of my thighs and down my legs, into my feet. They tingled, felt like pins-and-needles, and became numb. I limped if I was out of bed, but I was in bed for the majority of the summer.
Down the Mysterious Medical Rabbit Hole of Invalidation
Doctors told me I had neuropathy: nerve damage. That made sense, given the intense pain that would spike through me at random times. It became difficult to drive, climb, walk, write, move. I’d have good days and I’d have bad days. Some days I’d be seen walking just fine and other days I used a cane to hobble through a store.
Next came my knees. I told my doctor that my knees felt very weak and I didn’t think I could hold myself up. She poo-poo’d it, saying I didn’t have nerves in my knees so that couldn’t be happening. Meanwhile, more areas of my body weakened.
Because of the tingling, numbness, and weakness, I wanted to be seen by a neurologist. My primary doctor didn’t think any of my requests were necessary, but I persisted and she finally referred me. I was worried about M.S.
The neurologist sized me up and asked me to walk down the hall. She watched my gait, my limp. She examined me – bending knees, turning my head, flashing a light in my eyes. She held up my arms and watched my feet move. “You’re fine,” she said. I told her I was not fine. I told her I wanted an MRI and she said it wasn’t necessary. I left, very unhappy.
I didn’t get too far before the nurse caught up with me and told me the neurologist ordered an MRI of my lumbar spine – ASAP. Thoroughly confused but willing to try anything, I got the MRI done that evening. Result? Fine.
A month later I had a brain MRI done. Result? Fine.
I was anything but fine.
The Litany of “We Tried…”
I was referred to the pain clinic and seen by two different practitioners. The first handed me over because he didn’t know what to do with me. I had already tried muscle relaxants (they just drugged me and zonked me out for days), antidepressants (said to be good for pain, but I didn’t respond well), a TENS unit, acupuncture, cranio-sacral massage, regular massage, and health psychology.
In October of 2014 I saw a rheumatologist for the first time and though he ruled out arthritis, he did diagnose me with Fibromyalgia and Chronic Fatigue Syndrome.
A Rose By Any Other Name is at Least a Name
I already knew that Fibromylagia and CFS were commonly diagnosed when doctors didn’t know what else to say to chronic pain and debilitating fatigue. Though very real issues, I now believe Fibro and CFS and a number of other “invisible illnesses” can all be found beneath the umbrella of Chronic Lyme. And while not everyone with widespread chronic pain will have lyme, I do believe that is the case with me.
But back in 2014, after fighting with doctor after doctor over how “not fine” I really was despite a whole lot of “fine”-looking blood tests, finally having a label felt a lot better. I could do research. I could stop trying to convince everyone (doctors and family alike) that it wasn’t all in my head. I had so many “professionals” telling me that it was in my head and I ought to “just seek mental health treatment” that I finally began to second-guess myself and wonder if this was all in my head. Who was I to be believed? I had tried to be a good health advocate for myself but had only gained a reputation as an “over-emotional” patient. And the minute a new practitioner looked at my medical chart and saw that I did have a history with depression and anxiety, they automatically chalked it up to stress.
The pain, fatigue, depression, anxiety, and all that comes with that got so bad that in January of 2015 I experienced the worst “flare-up” of all. I was at the grocery store and suddenly my fingers became cold and prickly; my legs seized up in pain and ache. My extremities were freezing, yet my arms felt like hot water rushed through them, creating a painful “buzz” and making them as heavy as cinder blocks. I struggled to get to my car and, once there, sat for a good 15 minutes before I was able to move.
Once home, I was exhausted. I became bedridden for a few weeks. I could barely move; meals were put on a TV tray beside my bed. I missed my child’s first solo in a school concert. I missed countless family dinners. I noticed my temper was short and irritability high. I was snapping over the smallest things and all the kids and my husband took notice. I thought it was just the stress and grief of being sick. Adding to the burden of being sick, I also had to take unpaid sick leave from work, which furthered our financial weight.
But You Don’t Look Sick
Everyone who knew me (but did not live with me) had always said, “you look so great! You lost all this weight, your cheeks have color; your Facebook page is full of great pictures of you and your family! What do you mean you are sick?”
My cheeks were flushed from sickness, my hands and feet were either freezing cold and numb or hot with this odd buzzing. I was too exhausted to live normally during the day but would gain second wind around 10pm and not be able to sleep until 1 or 2am. I was highly irritable, angry, and often on the brink of tears. I was NOT a pleasant person to be around. My body twitched randomly, especially during stressful situations, and I was forgetting regular words, misplacing and inverting words in sentences. Any food made me sick – even once I got off gluten and all the fad-diet foods, I still was sick after every meal. I limped more than I walked and laid down more than I was upright. I had to go to part-time work because I could not climb, lift, walk a long distance, or be called upon to process information easily. Many more symptoms popped up, but I will stop at this list.
Neighbors, both known and unknown, were such blessings. We received scrumptious meals, gift certificates to sub shops; I even received a lovingly made basket full of comfort items. I can’t tell you how grateful I was for all that support.
Still, chronic illness is hard to support in another because it doesn’t go away. There’s only so many casseroles we can reasonably ask for. After a while, people move on. They have lives to live. My life went on too…
When “Under Our Skin” Opened My Eyes
During one of my late nights when I could not sleep and was desperate for answers, I came upon a documentary on YouTube. At that time you could watch the entirety for free, but that is no longer the case. The documentary is “Under Our Skin” and changed my life forever. What follows is an extended trailer.
It tells the tale of chronic lyme and how political it has become, how sufferers have to fight for their right for treatment. It explained to me, that night, how all of my symptoms could be under the very large and misunderstood umbrella of chronic lyme disease. I watched as one young woman nearly lost her life and another was full of symptoms but looked fine. I learned about what lyme does to the body and, after watching the movie (shortlisted for many top film awards), I cried – out of concern, but mostly out of relief. I thought I had just found the answer that would raise a lot more questions…yet hopefully bring back some quality of life.
After looking into Lyme Literate Doctors and, indeed, facing major opposition from the general medical community (just like I had read online and watched in “Under Our Skin”), I found a practitioner who agreed to meet with me. She went over my health history and advised me on what blood tests to ask my primary doctor for (because they’d be covered by insurance). What those tests showed was that I was hypothroid (hashimoto’s disease) and was severely low in magnesium, iron, and potassium.
What is so sad is that these tests had been done at least once a year since 2005, according to my medical records. A number of other tests were repeatedly done and I am going to be looking into the cause. Because my numbers fell within “normal range,” doctors never gave me a second glance. I was fine.
But what doctors called functional medicine doctors will look at is the whole picture – not just a standard range. So although my numbers fell within standard range, we discovered I was massively deficient in several vitamins and minerals which all pointed to hypothyroidism, adrenal problems, and much more. This insight got the ball rolling – out of the general practitioner’s office and into functional medicine.
Take a deep breath, we’re about done…and yet just starting…
And so here we are. After joining forums and doing research, I’ve chosen the Lyme Literate Medical Doctor (LLMD) that will hopefully help be on the path to remission/recovery. My symptoms have now turned mainly neurological, which includes brain fog, problems speaking, thinking, processing information, involuntary twitching and shaking. The muscle/joint pain and fatigue remain, but what concerns me is the real probability of co-infections.
While chronic lyme disease is something that will always be in you, it is possible to go into remission and lead a happy, productive life – but maintaining a healthy lifestyle is key. I am only at the beginning of this journey and yet I also feel like I’m at an end. Perhaps it’s the end of crying out and feeling unheard. Perhaps it’s the end of feeling like a hypochondriac. Perhaps it’s the end of the paralyzing sadness that comes with feeling abandoned. I hope it’s the beginning of treatment that will work – and if not the first type of treatment then the second. Or third. With this illness there are many types of treatments that can be effective. It all depends on your own biological make up.
So let this be the beginning of good things: hope, encouragement for others, and gratitude for the crazy, messy, beautiful, amazing life God has given me.
Thank you for reading my lymie* story.
*those with lyme disease affectionately call themselves “lymies.”
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