My one year anniversary of being really sick is coming up next week, and it has me remembering what life was like a year ago. I’d sort of been dreading the first anniversary because well, I’m bummed I’m stiiiiiiill sick. You see, like most Lyme patients, I got about a dozen or two diagnoses before I made it to the truth….
On OCTOBER, 19, 2014, I woke up with hearing loss on the right side. Nearly complete hearing loss in that ear totally out of the blue. Visits to urgent care and a couple weeks of decongestant spray didn’t even dent it, so I eventually made my way to an ENT who diagnosed it as sudden sensioneural hearing loss. I didn’t know the term at the time, but this was my first “bucket diagnosis”. It’s essentially damage to hearing with an unknown cause thought to be nerve related. Okay…. I was told that an injection of steroids directly to the inner ear would probably clear it right up. It didn’t.
Not only did the hearing loss not budge, but I quickly developed near debilitating pain on my right jaw and along my right sinuses after that injection. At first mention, my ENT was sure it was unrelated. So I saw a dentist, and a specialist, and was loosely diagnosed with TMJD (bucket diagnosis #2). This is when the little voice in my head started to perk up – two new issues, both the same side of my head, this can’t be coincidental. Refusing to drop thousands of dollars on TMJD treatment, I went back to my ENT insisting a relationship between the two. Pondering my question as if for the first time, he suggested I may be having a flare up of a zoster virus known to impact facial and auditory nerves. Seemed reasonable enough! He put me on a boatload of antivirals and oral steroids (Lymies, this is the cue for your eye roll).
Things got a lot worse really quickly from there. In retrospect, this makes sense. I now know steroids to be immunosuppressive and that Lyme flourishes in their presence. Oops. On top of the hearing loss and unrelenting jaw/facial pain, I started to have really severe balance trouble, dizziness, even minor episodes of vertigo, panic attacks and super exaggerated emotions. What was going on?? I called my ENT during my first panic attack and cried at him on the phone begging him to do something. He told me to come in right away. Why he’d asked me to come in was beyond me, because he couldn’t have been more dismissive. I explained my troubled state, the pounding heart, the shortness of breath, and I cried right there in his office (sooo not like me). That asshole told me it was probably just an emotional reaction to my hearing loss. Women, he explained condescendingly, are prone to anxiety. He’s lucky he didn’t get punched in the face right there. I stopped the steroids right away (knowing from my MS experience that they’re linked to exaggerated emotions), but kept on the antivirals.
I switched ENTs, which was my first experience ever in breaking up with a doctor. The new ENT was a slight improvement. He evaluated my whole set of symptoms and said that at least the hearing loss, balance problems and even panic attacks could be explained as labyrinthitis / vestibular neuritis (“labs” for short, this was bucket diagnosis #3). Labs is a condition caused by damage done to the vestibular system by… you guessed it… an unknown cause. Usually viral, he said. Almost never bacterial. Mmhmmmm. I now know labs to be a direct result of inflammation, and I now know Lyme to be a direct cause of a LOT of inflammation. But we’re getting ahead of ourselves. For now, at least I had a diagnosis that explained most of my symptoms. Off I went.
There is no drug therapy treatment for labyrinthitis. Treatment is basically threefold: 1) wait for time to pass and the system to heal, 2) control anxiety as much as you can (I used cognitive behavioral therapy and meditation), and 3) Vestibular Rehabilitation Training to help your brain learn to compensate for the damage done to the vestibular system. The average time for recovery, I was told, was about 16 weeks.
I was homebound during this time, unable to walk very far, let alone drive. I set my sights on the next 4 months and got to work on recovery. Every day, I woke up, got dressed and did my vestibular rehabilitation homework assigned to me by amazing therapists at Cascade Dizziness and Balance clinic where I had weekly appointments. The rest of the day, I spent walking my dogs as far as I could…which, at first, meant about half a block. This was a seriously rough place to be physically; I used trekking poles to keep upright and got too dizzy to continue really swiftly. But I built up distance over time. Eventually I was taking longer and longer strolls through the neighborhood. Over the weeks, my symptoms improved. It was up and down over time, but my abilities and ranges increased.
Halloween, my 31st birthday, thanksgiving and Christmas came and went in a bit of a blur. I stayed at home almost constantly, I worked on my recovery as I was physically able to, I spent a lot of time on the couch, and mostly I just tried to survive. It was a difficult time, but I knew it was temporary. Emotionally, it felt very doable. I knew what I had, I knew what to do about it, I had doctors and therapists I trusted and I just had to put in the work. Recovery would come, I was sure of it.
By DECEMBER I had added rather substantially to the list of symptoms. Some were really obviously related to vestibular damage, like bouncing vision (technical term oscillopsia) that caused my eyes to bob with every step. But some weren’t so closely linked to the vestibular system. I had incredible insomnia that would keep me awake and downright hyper for days at a time. At one point in the dead of winter, I sponge cleaned my entire front stoop, vibrating with energy and mania. I had episodes of fight/flight that would render me terrified for weeks – I actually had to have friends come babysit me, I was so scared to be alone. Even sometimes without any sense of fear, my heart would pound and I’d have trouble breathing. I developed a lump sensation in my throat. I started to get acne for the first time in my life and my hair was falling out in handfuls.
I reported all these symptoms to my ENT and vestibular therapists, and looking back, they were definitely a little puzzled. But they told me anxiety was common with vestibular disorders, and my body was probably just in shock from all it’s been through. That little voice in my head was there again – could it be this isn’t adding up as the root cause after all? But my hearing tests were improving and my vestibular therapy was coming along nicely, so I kept working at my rehabilitation.
By JANUARY, I was ready to try work back in the office part time. Stimulation was really challenging for me. Lights, traffic, noise – it all sort of caused me to shut down. I started with just hours in the office, feeling sick and disoriented, I focused on trying to “pass” as normal. I remember experiencing a TON of brain fog, and derealization at this time. I had trouble comprehending even basic things people would say to me, and at times I wasn’t sure what was real, where I was or what was really going on. This was by far the scariest thing I’ve ever experienced. I sat in boardrooms through long meetings just hoping and hoping that nobody would call on me to contribute. The greatest accomplishment of that period was just looking like a normal human. (My review for this first quarter back, by the way… not great. Heh.)
By FEBRUARY I was actually managing pretty well insofar as the classic symptoms of labs go. I was coping better with sensory input, my hearing had improved a lot, and although my eyes were now really blurry, they weren’t bouncing anymore. I could drive again and was able to walk a fair distance. All in all, I’d made a pretty solid recovery from Labyrinthitis. I carried on waiting for the supposed residual damage to start clearing up.
By MARCH it was obvious those non-classic symptoms just weren’t improving. My hair was still falling out and I was having acne regularly. My body was in a lot of pain – mostly jaw and facial pain, an incredibly stiff neck and low back pain, my muscles ached. I was often physically tired. But never mentally. By now the panic and adrenaline had increased dramatically. I still couldn’t stay asleep and would average about 3 hours of disjointed rest a night. I’d wake up in full on fight / flight frenzy, pounding heart and all, and would have more than enough hyper energy to carry me through the days. My stomach was awful at this point, I was losing weight pretty rapidly and hadn’t had a solid bowel movement in months. “Just stress” my doctors told me. The little voice inside softly protested: I’d been through worse stress than this before and never had such a reaction.
Strangely, I also noticed I had some old conditions come back too. I’d recovered from plantar fasciitis a year ago, but it was back (bucket diagnosis #4). Migraines I’d been plagued with weekly as a child and teen were back, along with “ice pick headaches” (bucket diagnoses #5 and #6), arthritis in my knee I’d had as a teen was flaring (bucket diagnosis #7) as was the carpal tunnel in my wrists I’d had in my early twenties (bucket diagnosis #8). I was even starting to have pain in my elbows and shoulders. That little voice urging me to find an underlying cause of all of this was getting louder and louder.
I went back to my ENT to report my incomplete recovery. But no luck. According to all the tests they re-ran, my ears were as normal as they were going to get (still plugged, but functional), and my VRT therapists said my balance was testing in the healthy category once again. There was nothing more they could do.
Thinking it was perhaps time to take another look at my whole body, I went off to see my primary care physician. I cried in her office about how crappy I felt (those darn exaggerated emotions again), she listened for her allotted 10 minutes of patient time and she ran some basic bloodwork. A few days later, it all came back normal, and she made an easy, confident diagnosis of generalized anxiety disorder (bucket diagnosis #9) and she gave me a prescription for Lexapro. The voice in my head screamed – this is not anxiety. Something is going wrong physically here. But, I’m an open minded, self-reflecting and even sometimes self-critical person, so I paused my self talk and considered the opinions of others above my own. Outside perspective is after all valuable, right? At this point 4 physicians I’d seen for care told me this could all be anxiety. Maybe it was all in my head.
It wasn’t. I lasted 5 days on antidepressants. They amplified every symptom I had tenfold. I went the whole 5 days without sleeping, my hands shook violently with tremors, I felt crazy with mania and hyperactivity and my heart was pounding out of my chest around the clock. My frantic calls were returned by long delayed email, my PCP assuring me that I will feel better if I just keep at it. By day 5 I was so hyperactive and manic, that I was having to sprint full speed around the neighborhood every 30 minutes just to burn off the adrenaline. My ears had also started ringing something awful. I stopped the drug and never spoke to that doctor again. She later sent me a note saying she was disappointed in me and that I really just needed some good psychiatric care. My medical team was dropping like flies and I was beyond convinced something horrible and wholly undetected was happening to me. I no longer felt at all safe, confident or emotionally okay at all. I was lost.
Not sure where to turn, and desperate for someone to consider an underlying cause for this all, I went to see a naturopath near my home in Issaquah in March. Naturopaths are all about whole body medicine, right? It was a good move. She was the first compassionate doctor I met on this journey. She spent over an hour with me and looked at my body as a whole. She explored my whole health history, asked me about my physical and emotional self, ran the most elaborate bloodwork I’ve ever had done, gave me a hug and told me she’d help me find out what was going on. I loved her immediately. Although I picked up a few more labels on that first visit including chronic fatigue syndrome, Raynaud’s and fibromyalgia (bucket diagnoses #10, 11 and 12), she was the first doctor to agree that this couldn’t all be coincidence, stress or bad luck. Finally.
The bloodwork came back with some answers. I was severely hypothyroid and had anti-thyroid antibodies indicating hashimoto’s disease (not exactly a bucket diagnosis, but diagnosis #13 anyway). I was also severely deficient in several important vitamins. YES! Surely, THIS must be the cause of all the drama. Right?!
I went home and pondered my big new diagnosis. I read about it online and in a book received by a kind friend and quickly grasped the basics. In patients with Hashimoto’s, the body produces antibodies that attack the thyroid and damage its tissues. Having been damaged, the thyroid can’t produce as many hormones as it needs to. With low thyroid hormones, patients tend to gain weight, become very sleepy, are prone to depression. Hmmm. I had the low hormones, yes. But the general profile didn’t fit me very well. The little voice offered a little resistance… was this really the problem? But Hashimoto’s does cause hair loss, acne and achiness. In rare cases can cause neuropathies – or damage to peripheral nerves. Usually this manifests as numbness or tingling in extremities, but I stretched the theory to believe maybe it impacted my auditor nerve and caused the labyrinthitis. Maybe.
Through MARCH, APRIL and MAY I tried a bunch of different thyroid medications, and I cleaned up my diet. I supplemented the vitamins I had been deficient in and started taking selenium to bring those autoimmune antibody counts down. It didn’t go well. Not only did I not really fit the profile of a hashimoto’s patient, I also didn’t respond the way I should have been responding to those interventions. My antibody numbers just kept climbing, my thyroid hormone levels swung wildly up and down without any regard to my meds, and I made no progress whatsoever with my symptoms.
We poked away at a few more tests. My saliva cortisol test were normal (no adrenal fatigue), we found high DHEA on one of my blood tests, but my 24 hour urinalysis was normal, so no hormone imbalance. Finally, she sent me for a thyroid ultrasound and another check of the thyroid bloodwork. That’s when things got weird.
The bloodwork returned even more antibodies. More of those known to cause Hashimoto’s, yes, but also those known to cause Grave’s disease (diagnosis #14). Having both was very odd indeed as these conditions are in total opposition with one another. Granted, I fit the profile of a Grave’s patient much better: weight loss, mania, tremors, hyperactivity and adrenaline over activity, but my bloodwork very clearly and dramatically showed low thyroid hormones, thereby negating the very mechanism by which Grave’s would cause these symptoms. We waited for the ultrasound to break the tie. Each condition causes distinct physical changes in the thyroid, seeing them in print would tell us which disease I was truly suffering with. What I didn’t expect? My ultrasound results were totally normal, healthy, completely undamaged thyroid. SHIT.
Meanwhile, my symptom list grew and grew by staggering proportions. Every day this situation was starting to feel more and more emergent. My poor naturopath threw up her hands, and referred me to an endocrinologist, who would surely know what to do with me. THAT was a complete disaster. After a review of all my bloodwork and my ultrasound results, the doctor actually scolded me for having been treated by a naturopath, she yelled there was no possible way I had Grave’s disease according to my bloodwork (duh) but I couldn’t have Hashimoto’s with a normal ultrasound. Clearly frustrated by the contradictory set of circumstances, she mumbled a half dozen different possible causes of my distress including pituitary tumors, adrenal disease and ended with “probably just stress”. I left her office in tears and entered an emotional tailspin. I was ready to give up completely.
I was still up most nights, and adrenaline coursed through my veins most the time filling me with round-the-clock unprecedented fear. This combination naturally lead me to a lot of wee-hour internet searching. Finally… I came across a description of Lyme disease on another patient blog that sounded a lot like mine. Almost just like mine, in fact.
I did a little more digging and quickly found that Lyme causes almost every symptom on my list. It’s known to infect peripheral nerves. It’s known to inflame digestion. It’s known to infect the thyroid and brain, where is masquerades as autoimmune disease (your own immune system, you see, sees the bugs there and mounts an attack, damaging your own tissue sometimes as it does.) Lyme was even very closely linked with migraines, arthritis, even multiple sclerosis. Wow! And I knew. I had to get tested.
In JUNE, I went back into see my naturopath. I asked her to run a Lyme disease test, the Igenex western blot. And I waited for my results. Just a few weeks later, my beloved doctor (bless her uneducated heart) handed me my “you don’t have Lyme” diagnosis. She could write “negative” on that paper as much as she wanted, that test lit up like a Christmas tree. I smiled and said thank you. That was the last time I saw her. I had already lined up my Lyme literate doctor, I got on the waitlist for LymeStop and I was ready to start the real healing.
Wow. This blog got a lot longer than I expected. Oops 🙂
The rest of the story, of course, is documented here on this blog. I am 4 months into treatment using an 6 prong treatment approach that includes:
- Long term, high dose antibiotics using the Horowitz approach
- Holistic support of my gut, immune system and body with supplements
- A squeaky clean diet
- Tons of detox
- Cognitive Behavioral Therapy (more on why I call this a Lyme treatment in a future blogpost)
- And LymeStop
The early months of treatment were extremely rough. They say you get worse before you get better and it’s the truth. And during those months of near agony, I was dreading the arrival of this anniversary of being really really sick. My journey, which I’d originally believed would be measured in weeks is now measured in years, and I hadn’t made much progress yet. But I realize now, that’s not actually true. It’s not true at all…
Last October, I got sick. Sicker than I’ve ever been in my whole life. I was sick enough that I came face to face with the prospect of losing it all: my job, my home, my independence as I knew it. And I didn’t flinch. I worked really really hard on my recovery from labyrinthitis. And while that work paid off with abundant returns, it didn’t get me well again. So I kept going. I saw at least SEVENTEEN medical professionals. I received 12 diagnoses, none of which felt like the final right one. I advocated for myself. I got called crazy. I felt abandoned. I felt alone. I lost a lot of friends and almost all my hobbies. At times, I damn near lost myself. But I have never been stronger. And I got that 13th diagnosis that explains all the ones before it and then some. I got myself the medical team I needed. I sold my house and my car to free up funds to pay for my care. I took the big brave step and, now, I’m finishing my fourth month of treatment for the right condition on the 30th.
Has it been easy? Hell no. Far from it. But has there been progress? You betchya. There’s a strange beauty, you see, in getting stripped down to your rafters like that, in finding out just exactly what you’re made of. Of reducing your life, your pursuits even your belongings down to the bare minimum and having to trust your own internal compass through the rockiest terrain imaginable. It’s strengthening and centering due to sheer necessity.
Best of all, my physical self is finally starting to respond the way that I’d hoped. I’m having more good days now. Those glimpses that started in early October, they’re stretching into whole days now. My most stubborn symptoms, I can feel their resolve weakening. The less stubborn ones, I have days and hours completely without them now. I sleep most nights. I don’t have panic attacks anymore. My hair isn’t falling out. I have whole big complex discussions and debates with my full intellectual capacities returned. I’m at work where I no longer have to fake a darn thing. I am myself again. I have a long way to go yet. I’m weak, I have poor stamina and there are many symptoms still to cross off this list, but I am doing it… step by step, I’m doing it.
I am still sick, on this really-sick-iversary. And sure, that bums me out. I wish this had all been a whole lot easier. But I am doing this. I am doing this very well, and in the process, I’m becoming a new and interesting version of myself. One it turns out, I’m happy to get to know… cuz she’s kind of a bad ass. So happy one year sick-iversary, ME. Keep up the good work.
If you’re reading this story and think you might have Lyme, read this blog.