I have Lyme. I’d like to not have it anymore. I also just want cake.
Close your eyes with me for a second. Your pretend eyes because keep reading. Imagine you’re on a stunningly beautiful remote island that would cost you a lot of money in plane tickets to get to. Probably a lot of hours too… ugh you are probably so stiff from that plane ride. And jet-lagged, oh my gosh the jet lag. Wait no put yourself back on the beach I am terrible at this I am so sorry. You are standing at the waters edge of this stunningly beautiful and remote beach. This beach of finely ground sand bleached by hundreds of years of sun radiates warmth into every cell of your being. The wind is blowing gently through lush tropical foliage… just enough to make that ambient noise people filled with stress buy CD’s of back in the real world. And the water, oh the warm salty water of emerald and blue laps lovingly against your toes, swirling and catching around your ankles as the ocean pulls each wave back into itself. A bird squawks from deep in the forest and you’ve completely forgotten all about desk jobs and telephone calls and emails and checking your Facebook on your phone (but not this blog, of course). You are with the love of your life, maybe that person is your spouse or significant other, maybe that person is the one that got away, and now here they are. With you. Their hair all perfectly imperfect from sea salt and gentle breezes and your faces glow because you are both in a world where sun doesn’t cause cancer. Nothing could be more perfect as you exhale and think to yourself that you’ve actually achieved true zen-omgwhatishappening your heart starts randomly pounding and racing in your chest! A flash of severe heat courses through your body and stays, not leaving, begging you to collapse and drag yourself to shade. The paradise begins spinning around you as you try to focus again but your eyes aren’t working. Nausea hits you with a tidal wave and you begin to panic as you scour your surroundings for a socially appropriate place to throw up (does one ever exist though, really?). You just can’t seem to catch your breath as you struggle to absorb oxygen from the air. Your heart rate continues to skyrocket and you can no longer hide your symptoms or play it cool. Your vision greys. You fight it. But you can’t. Your vision blacks. And just like that, you are slumped on the sand and out colder than when Mayweather delivered the final blow to poor Manny. But this isn’t Mayweather vs. Pacquiao. This is you vs. Dysautonomia. And for many of us, this is normal life. Minus the breathtaking island. I just wanted to do that part for fun.
So now you’re like dysauto-what? It sounds terrible and what does it have to do with Lyme? It’s ok. I didn’t know these things either until it SLAPPED ME IN THE FACE WITH THE FORCE OF A THOUSAND… REALLY FORCEFUL THINGS (I am getting really tired of this word recall deficiency problem). But to sum it up, Dysautonomia is hard to say, hard to have, hard to get diagnosed correctly, and frequently comes with Lyme. All things I love to talk about. Let’s dive in.
Dysautonomia is the umbrella term for the symptoms that arise when your Autonomic (think automatic) Nervous System goes on the fritz. People are either mildly affected or completely disabled. Do I want to get all physiological on you first or do I want throw symptoms at you….. ummm….. let’s do the first. Put your smarty pants hats on peeps. We are diving in to the human body. The Autonomic Nervous System (ANS) is a complex, fragile and crucial part of your Peripheral (think outside brain and spinal chord) Nervous System. It is the network of nerves that carries information from your brain and spinal chord to your heart, bladder, intestines, sweat glands, pupils, and blood vessels, among others, and controls all of the automatic things that keep you alive. The Peripheral Nervous System has two parts: your Parasympathetic (rest and digest) Nervous System (PNS) and your Sympathetic (fight or flight) Nervous System (SNS). That is a lot of nervous systems and acronyms. I know. We’re complicated. Lucky you if you don’t find yourself becoming Doogie Howser, M.D. from researching all this stuff because you are too disabled to take a shower anymore and you don’t know why. /endsarcasm. Symptoms of Dysautonomia arise from malfunctioning of either of these two branches (PNS or SNS).
Causes of this horrible thing are many but all center around damage or neuropathy or disease to the network of nerves in the previously mentioned systems and acronyms. Brain tries to send a message to let’s say your heart, but the message becomes all whack from trying to travel through the affected nerve(s), and heart does not do what heart should do. It’s like a bad game of telephone where your life is in the balance. There are many causes. I’ll name a few. LYME (typically late-stage Lyme). But also autoimmune disorders like Lupus and MS, HIV and AIDS, chronic alcohol misuse, spinal chord or brain injury, Parkinson’s, congenital defects or inherited disorders, and other viral or bacterial infections including Tuberculosis and the bacteria that produces Botulism. Botulism?! Yes botulism.
I have been watching this gif for entirely too long…
Symptoms? Oh you want symptoms? As listed on the Dysautonomia Youth Network of America’s website:
Orthostatic Intolerance – (inability to remain upright)
|Shortness of Breath
Temperature Regulation Problems
Inability to concentrate
Difficulty with recall
Hypersensitivity to sensory stimulation
Did you notice something? DID YOU?
Did you notice many of these are ALSO SYMPTOMS OF LYME AND CO-INFECTIONS?
I did. In fact, many believe that those diagnosed with idiopathic Dysautonomia are actually suffering from underlying infection. After my experience, I tend to agree. Remember, reliable Lyme testing is a coin toss so it is highly plausible that many of these patients have been tested for Lyme and received a false-negative. At which point they likely received their label of “idiopathic Dysautonomia” and accepted it. There is no real treatment for this condition. Because it isn’t really a condition. It’s just a label for a group of symptoms. People who faint a lot are told to up their salt and water intake. Some are put on blood pressure meds. Some on antidepressants. Essentially… all bandaids or “coping” meds. It’s sad. I feel sad for these people. I could have so easily become one of them. I too, suffer from Dysautonomia, and I too, initially tested negative several times for Lyme disease. Oh, that’s a great segway into sharing my experience. So I will.
Many of you may know by now that one of my first symptoms stemmed around my heart. “The beginning” began when I was woken suddenly in the middle of the night with my heart racing and climbing like a jet trying to achieve altitude. I couldn’t catch my breath. I felt dizzy and faint. My brain was buzzing. Not with thoughts. But a literal buzzing feeling. I felt that fainting or losing consciousness was eminent. So… ER visit. An unproductive ER visit where I was given IV Ativan and sent home. Repeat this twice in one week, and by the second time, I had descended into full-blown illness. Roller-coaster heart rates, struggles with breathing patterns and frequently, cessation of breathing if I fell asleep. Severe and sporadic fatigue that would hit suddenly forcing me to lay down immediately or fall. Body temperature gone cray cray. Insomnia and panic attacks vicious enough to send anyone out in front of a bus. One-hundred more symptoms I could list. Annnnd the Lyme chapter of my life was ushered in.
For months and years afterwards I would struggle with these symptoms. My heart would randomly race and it would especially begin to pound when I stood up. This is commonly referred to as Postural Orthostatic Tachycardia Syndrome, or POTS (most common symptom of Dysautonomia). Normally when you sit or stand up, your brain immediately sends signals to your heart to increase your blood pressure just enough to keep blood pumping to your head against the greater force of gravity introduced when sitting/standing (when it can’t, the heart will race to try to compensate for lack of pressure). It also sends signals to many of your vessels to constrict enough so that blood does not pool in your legs and feet (which also happens to me on the regular). This all keeps you from blacking out whenever you want to do anything other than like, lie horizontal on a bed all day. Some people with severe POTS/Dysautonomia can’t even do this. Imagine a life like that. Just imagine it. I bet you never though twice about the work your brain and heart and vessels do just so you can sit up and get up and walk around without losing consciousness. Those of us with POTS-like symptoms have to think about it every time we want to even move. My heart would race if I sat up, stood up, stood for more than 5 minutes in one spot (I frequently have to start moving and, if in public, covertly jumping from one leg to the next to try to urge my brain to send those signals to my heart and vessels even harder). If I rolled over in bed in the middle of the night or got up to pee, my SNS (remember, Sympathetic Nervous System) would dramatically overshoot the message and my heart and blood pressure would explode and would take a good 15-20 minutes to settle down to my new “normal” resting heart rate again (still uncomfortably high in the 90s – prior to my latent Lyme infection surfacing I had a resting heart rate in the 60s). Just making a quick run to the grocery store (if I felt well enough that day) with D required I have a shopping cart to lean on due to feeling so faint when I stood (yet roll me over in the middle of the night and I’m ready to run a marathon, go figure). Living with a heart that just won’t calm the heck down or pep the heck up has been one of my biggest discomforts. It has gotten SO much better after a year of treatment. About 80%. I don’t have the courage to try and push it yet with exercise… but soon guys. Soon.
Another way in which Lyme-induced Dysautonomia ruined my comfort of being is through dramatic temperature dysregulation. I’m talking more intense hot flashes than a woman entering “her time”. I’m talking the house is 79 degrees and I am in three shirts (two of them sweatshirts), two pairs of my winter pajama pants, and I am huddled under three blankets on the couch and still convinced I am not going to come out of this with my fingers and toes. And the swinging. From one extreme to the other within minutes. On repeat. All evening long. From Hypothermia to “D I am literally on fire inside my body, I literally could not be MORE on fire… help me”. Throw the blankets on D, take the blankets from D, throw the blankets on D, take the blankets… You see? This also applied to introductions of outside temperatures. I could not tolerate the heat the first summer I was sick prior to diagnosis and treatment. If it was July or August or September or any of the months it is hot here, and I if go outside…
time to faint. And winter months? Shivering so violent it would occasionally trigger a seizure. My brain just could not get the signals out to cope with temperature change. Not one bit. See… it’s the little things us patients learn to fear. It’s the little things everyone else never even thinks about that becomes major issues for us. Life begins to revolve around how long my heart will let me stand up that day or if it’s even 5 degrees hotter outside today than it is in the house. If I can withstand a shower or can be trusted to drive. Or if I am going to wake up again if I fall asleep because I have had to breathe manually all day long and I’m worried when I fall asleep I will stop. It’s not a fun way of being.
There are plenty more symptoms I’ve experienced that I could delve in to, but you don’t want to hear about how many times I run to the bathroom at night. It’s more than your grandfather with an enlarged prostate. Just let me tell you that.
Lyme and Dysautonomia shouldn’t seem too far-fetched. We know Lyme causes neuropathy. (source)
We know Lyme loves brain, joint, and nerve tissues. (source)
We know Lyme can cause brain lesions. (source)
We know that the toxins they produce damage nerves.
(This complicated chart shows how Lyme bacteria become major jerks by producing toxins that break up our body’s way of communicating – if in the ANS, usually through the neurotransmitter Acetylcholine – through synapse junctions. Or, in layman’s terms… how our nerve cells communicate with each other, aka your brain sends a message to your heart, for example, by relying on a long line of nerve cells between the brain and heart to be able to properly pass the neurotransmitter from one nerve cell to the next.)
We’ve even caught Lyme spirochetes inside nerve cells.
Atypical and cystic Borrelia forms following 1 week exposure of primary neuronal and astrocytic cultures to Borrelia burgdorferi. C: Borrelia spirochetes closely surrounding neurons. D: Atypical filamentous and ring-shaped cystic, apparently intra-cellular spirochetes in a neuron. (Click on colored words you are like “huh” to for definitions… see, I helpful)
So yes, Lyme and Dysautonomia is quite an easy thing to connect. Bottom line, you let Lyme live in you long enough it’s going to find some pretty important nerves to take up residence in. You are going to experience symptoms from that. They can be life threatening. They can cause this Dysauto-thing-I’m-sick-of-typing. Your Autonomic Nervous System literally keeps you alive… keeps your heart doing it’s thang, keeps your digestion going, your vessels working properly and your respiration functioning. You know… just those little things. My one little plea to all of you out there in internet land, if you know anyone suffering from Dysautonomia with unknown causes, find a Lyme specialist and pursue! Lyme-induced Dysautonomia can be cured or greatly reduced. Unless ya’ll like suffering.
Dis is de end of my Dysautonomia post. I’m so happy to be done typing that word.