Will There be Cake?

I have Lyme. I’d like to not have it anymore. I also just want cake.

Dysautonomia and Lyme – Aw, Two Things I Hate Have Become One.

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.

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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. ansThe 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.

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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)
Dizziness
Syncope (fainting/near fainting)
Tachycardia (fast heart rate)
Bradycardia (slow heart rate)
Heart Palpitations
Chest Discomfort
Low Blood Pressure
Lightheadedness
Gastrointestinal Problems
Excessive Fatigue
Exercise Intolerance
Nausea
Visual Disturbances
Weakness

Shortness of Breath
Mood Swings
Anxiety
Vertigo
Migraines
Tremulousness
Noise/light sensitivity
Insomnia
Frequent Urination
Temperature Regulation Problems
Brain fog/forgetfulness
Inability to concentrate
Difficulty with recall
Appetite Disturbance
Hypersensitivity to sensory stimulation

Did you notice something? DID YOU?

Did you notice many of these are ALSO SYMPTOMS OF LYME AND CO-INFECTIONS?

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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.

giphy (4)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… giphy (6)

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)lyme-disease-borrelia-22-728

We know Lyme loves brain, joint, and nerve tissues. (source)

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We know Lyme can cause brain lesions. (source)

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We know that the toxins they produce damage nerves.

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(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.
Picture-5Atypical 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.

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15 comments on “Dysautonomia and Lyme – Aw, Two Things I Hate Have Become One.

  1. Anonymous
    March 3, 2017

    Good page.

    Like

  2. Breanna Butler
    October 21, 2016

    Im laying in bed typing this desperate for any answer I can possibly get. Today was another doctor visit, wasted. Let me start from the beginning. Two years ago I was a healthy, 19 year old nursing student. One day in clinicals, while waiting for an assignment, my chest started feeling really weird. I remember saying I don’t feel well, can someone check my pulse? And before I could finish I was in a rolly chair with a pulse-ox on my finger with the machine showing a heart rate of 192. I was taken downstairs to the e.r. Sent home with a diagnosis of dehydration. The next morning I went to my primary doctor, and this is when the fun began. I was about to leave when my heart went awal again. I hit the floor and my arm muscles and back muscles began contracting, almost like I was having a seizure? I couldn’t breathe on my own so I was given oxygen. Ambulance was called. I couldn’t respond to anything or anyone, but I was conscious the entire time. I was sent to the er again and admitted to the hospital since this was the second time I had fainted, I guess you could call it. Every time I would sit up in bed I would almost immediately go back out. I was sent to Saint Thomas in Nashville where the er doctor diagnosed me with extreme anxiety and stress disorder. I was given an IV of Valium and Xanax mixed, but when it didn’t stop the symptoms the doctor came back and let me know it wasn’t anxiety and that I would be admitted for further testing. The next day was Thanksgiving and I guess all the decent doctors were off work that day. I was sent home and told to rest and eat a good meal. Seriously, they sent home a 19 year old girl who could not stop shaking and could not walk on her own home with no diagnosis. A few days later I was contacted by their neurology department asking if I could come in for an appointment. I couldn’t return to school because I still couldn’t walk on my own and words on a page looked like jumbled up Chinese. I went to see the neurologist and had an MRI, blood testing, and an eeg all come back normal. I was diagnosed with pseudo seizures and told to see a psychologist. I went to another neurologist closer to home who treated me for pseudoseizures by giving me enough Klonopin, Celexa, and Wellbutrin to kill a small pony. A few months go by and I tell him I’m starting to have pain and my symptoms are not improving that much. But, I could now walk on my own and I could go to the grocery store alone which felt like a huge accomplishment. He tries to prescribe me more medication and I say no, no more medication, and walk out of there like a 19 year old lady boss would. I weaned myself off all medications and my symptoms gradually improve. I get a local job at a doctors office. By now my major debilitating symptoms are gone but neck pain is something that never left. I suffered with neck pain every day but kept going because I was just glad in could drive myself to work. That ended a few months later when I fell asleep driving on my way home and did some donuts through a median because of my terrible fatigue. I began having heart rate problems again. I had been moved to the office closer to my home and put on restriction to sitting only. I was putting in charts one day and I felt my heart doing its thing. Before I could get to a room my heart rate was in the 170s. They did everything they could to get it down but ended up calling an ambulance because she was afraid I was going into SVTs (Supraventricular Tachycardia.) By the way, I had already seen a cardiologist who said my heart was great. Anyway, that was my last day at that job. I was sent to a new neurologist who gave me a tilt table test. It made me feel AWFUL, but I never completely passed out so the test came back fine and was once again told to see a psychologist. I gave up, went home, and swore I would never go back to a doctor again. About a year goes by and I’m doing great. I have a new job waitressing at a steakhouse about a mile from my new home. I get accepted at UNA and begin my nursing career again. I began having migraines that were terribly unbearable so I begin seeing a local doctor. She treats my migraines with Norco and daily Mobic. About a month ago my symptoms began to come back. Terrible fatigue, nausea, mild heart rate problems, muscle contractions, a hot feeling around my brain (does that make sense?…), difficulty breathing because I feel like my body isn’t doing it on my own so I have to make my self do it which is really irritating, a flu like feeling?, and some I’m sure I’m leaving out. Today I was in algebra taking notes, and I get this terrible nausea feeling. The kind that hits you so fast you think you’re going to projectile vomit. I got the feeling in my chest and my breath felt like it was sucked out of me. The room starts spinning and the numbers on the board look like ancient Chinese symbols. I start to get up and leave but I’m afraid to stand so I just sit there and quietly suffer through it. When the symptoms kind of calmed down I gathered my things and forced myself to walk to my car. I went to my doctor and told her everything I had been feeling and told her I couldn’t live like this anymore, and that I didn’t understand how a twenty one year old girl could feel this way. I tell her I’ve been reading about dysautonomia and ask her if that’s a possibility. She told me I needed to stop reading and to stop being a hypochondriac. I was making myself feel this way and I was too young and pretty to be making up medical issues. I’ve had a clean MRI, blood work, etc so there’s nothing that could be causing my symptoms except myself. I sit there, trying not to lose it. She begins to tell me how exhausted I look and that I need to go home and rest. She also told me I seemed depressed, so she wrote me an antidepressant and told me I needed to stop being negative and focus on being positive. There’s nothing wrong with me. Its in my head. I leave the doctors office bauling my eyes out wondering how I’m supposed to live like this and why no one can help me. If I could just get a diagnosis or some reassurance or something, but that’s what I get, every time. Sorry for the long post but like I said, I am desperate. I’ve left some symptoms and stories out because I know this is getting long, but any feedback or opinions would be greatly appreciated. I will answer any questions you have. Thank you!

    Like

    • tarathackeray
      October 22, 2016

      I am so sorry this has to be your story! A lot of symptoms you describe I experienced too – including the burning brain and chest caving in and getting the breath sucked out of me. Your come and go symptoms, the fact that they are neurological in nature (heart is fine, so that points to the problem being in the thing that controls the heart, aka brain), scream to me Lyme. I’m sure it will to a lot of other people as well. The problem is that your regular doctors will further dismiss and or laugh you out of their office, and if you can squeeze a Lyme test out of them, it’s horribly unreliable and riddled with false negatives. You’re right, you ARE too young to be dealing with this, there is a reason this is Happening to you and you CAN get to the bottom of it. Please go see a Lyme specialist (not an infectious disease doctor). If you need help finding one please send me a message through my Contact Me tab and I can help hook you up.

      I thought I had dysautonomia as well before my Lyme diagnosis, and well, I did. But there was this underlying cause. It is treatable and you can get your life back. I hate to see people suffer and then suffer further at the hands of doctors who just don’t know what to do with them! Please don’t hesitate to message me. Much love!

      Like

  3. Ashley G
    August 20, 2016

    Wow, I kid you not this is my exact story, minus the fact that I am just looking into the Lyme possibility right now… Severe dysautonomia, took ssri’s, it mostly went away on meds, went off of them, now dysautonomia is back. The amount of research I’ve done between when this happened to me 6 years ago and now with it happening again I could have been through Med School lol. I’d also be curious of hearing what treatment protocol they used for you. Thanks! So informative

    Liked by 1 person

    • tarathackeray
      August 20, 2016

      Ashley, message me through the contact me tab so we can talk about my treatment! I don’t post it publicly. 🙂

      Like

  4. Neshat
    July 16, 2016

    Hi Tara,

    Do you mind to share what your treatment plan was?…for lymes and for dysautonomia.

    Like

    • tarathackeray
      July 16, 2016

      Send me a message through my message me tab and I will be happy to share. I did not treat dysautonomia, just lyme. By doing that the dysautonomia healed.

      Like

  5. Neshat
    March 24, 2016

    Hi There,

    Nice article. I have dysautonomia also and recall having 2 insect bites (not sure if a tick but either a tick or spider) just prior to the dysautonomia starting. My lymes blood test always comes negative though (2 tests, one 2 weeks post bite and other 9 weeks post bites). Any advice? Also, I did take 3 weeks of doxycycline and it didn’t prevent the dysautonomia. What treatment did you have for lymes?

    Like

    • tarathackeray
      March 24, 2016

      Lyme testing is extremely unreliable. Lyme treatment is also very notoriously difficult with short course of abx like you took are not enough. Lyme is also not the only infection you can get from an insect bite that could cause dysautonomia. I would highly recommend finding a Lyme specialist (you can use the physician referral tool on my find a doctor tab) to further discuss your options. Typical infectious disease or regular primary physicians know very little about how to properly diagnose and treat these infections. Best of luck!

      Like

      • Neshat Behkish
        March 24, 2016

        Hi Tara,

        Thanks for your reply and support. I will try seeing a Lyme specialist in my area for sure:-)

        Like

  6. Anonymous
    September 7, 2015

    You just described my life the past 2 years! Diagnosed with autonomic dysfunction.. Then peripheral neuropathy… Now Chronic Lyme Disease!

    Liked by 1 person

    • tarathackeray
      September 7, 2015

      I’d say congrats but, well… 😁 at least now you know! Best wishes in your healing and recovery!

      Like

  7. Pingback: The Horrible Sitcom: Babs & Bart | Lyme and a Coconut

  8. LymieLovesJesus
    September 6, 2015

    I know you’re not a doctor, Tara, but i much prefer finding out info from you. I’m horribly depressed and angry at how Lyme and co keeps taking my life away and I’m greatly despairing. But reading your posts always gets me to at least giggle if not late out loud and boy does that help. Thank you for that. I have a question I’ll msg you about. Bless you.

    Liked by 1 person

    • tarathackeray
      September 6, 2015

      Aw, hang in there. Look forward to your message.

      Like

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