It Sucks In Here: Understanding Lyme-Related Mental Illness

Lyme-related depression and anxiety can seem like elusive concepts to people that have never experienced them. I mean, it must be weird to watch a healthy-looking woman not function properly, especially when it seems like she has a choice in the matter.

“Why won’t she just get out of bed and do something? She’s been under the sheets all day.”

“There she goes again … freaking out. She says she can’t breathe, but I’m watching her do it right now.”

“When will she stop worrying about every little thing? She has a great life. She needs to appreciate it more.”

I don’t blame healthy people for not getting me. Sure, it can be frustrating when my illness is not understood, but I can’t negatively judge others for NOT feeling what I feel. That was a confusing sentence. But you get it, right? I can’t blame healthy people for not stepping inside my body and strapping on my nervous system. In fact, I wouldn’t want them to. It sucks in here. A lot.

In an effort to help others understand the wild world of Lyme-related mental illness, I’ve decided to blogcast my story. So, here goes …

The panic came first. Like torrential rain. The sky opened up one day and BOOM. If you’ve ever been in the midst of a scary situation, if you’ve ever been mugged or been dangerously close to falling off a really high cliff, that’s the feeling that flooded my body … except it happened when I was listening to a story in my sixth grade classroom. Nothing situational sparked the fight or flight response. It just appeared out of nowhere. I couldn’t catch my breath, my pulse was racing and I felt like I was spiraling towards a horrific death. When this kind of thing happens you wonder about your sanity. Like if you started hearing voices with no people in front of you, you might ask yourself: Am I okay? Which I did. And the answer was ‘No.’

The torrential rain worsened. I accepted my mental move to storm city with grace, but it was hard. Bouts of disassociation soon followed the panic. I would walk into my own home, visually recognize it, but be unable to feel a connection to it. All of the memories to the space where my family and I resided were in my head, but the feelings weren’t accessible. The comfort I usually got from sprawling out on the couch had suddenly disappeared. It was no longer my couch.

And, unfortunately, the disassociation spread. It spread into my body. I began to look at myself in the mirror and see “just a person.” Not Sarah. It wasn’t me. Like some protagonist in an avant-garde horror film, I wasn’t in my body. In fact, I didn’t know where I was. I just knew I wasn’t where I was supposed to be.

The anxiety and depression crept in during the midst of all this. My chest cavity began to grow a ten pound bowling ball that still sits there today. Carrying around that weight at twelve years old was a difficult adjustment, and sent me to bed frequently. After full days with that “giant, new friend,” I slept. And slept. Sometimes I didn’t want to wake up because it was too hard to do stuff with the bowling ball attached. I frequently prayed to get my life-before-the-ball back. I would try to remember feeling light and free, enjoying myself at social gatherings and after school activities … not struggling through them. I began to worry constantly about stuff I’d never thought about before. I developed phobias about being poisoned, dying of rare diseases, falling off of bridges and burning in airplane crashes. These phobias invaded my dreams that always ended with me awakening in a pool of my own sweat.

I didn’t want anyone to know about my invisible bowling ball, weirdo worrying or torrential panic, so I exerted more and more energy to appear normal. In fact, I tried extra hard to be flirty, goofy and aloof. For a year or so I played the role of “a ditzy girl” in an effort to disguise my pain.

Collage made in high school
Collage I made in 1997

High school played out in a similar way. When my parents discovered what was going on, therapists were introduced, medications were prescribed and I was watched more diligently. I developed a nasty habit of cutting myself in an effort to “feel again.” I wanted to get back into my body so badly. I wanted a ticket home. I hated feeling so disconnected. I wanted to bleed out my pain, or at least mask it with a different, tangible kind. The cutting led to a suicide watch that I tried to explain was completely unnecessary. But, who’s going to listen to someone with an invisible bowling ball growing out of her chest?

My body was so profoundly noisy, I didn’t notice what could have been an incredibly telling symptom of Lyme for a long time. Once I recognized it, I didn’t share it with anyone because I figured it was the true sign of a crazy person. The ants invaded slowly. They crawled up and down my nerves at all hours of the day. They crawled into my head, my heart, my stomach, my arms and legs. I had no idea that what I was feeling was actually nerve irritation from the spirochetes (bacteria that causes Lyme). Instead, I figured I was headed for Nurse Ratched’s ward in One Flew Over the Cuckoo’s Nest. And nobody wants to be HER patient. I didn’t share this symptom with anyone, in fact, until I received my diagnosis at 32 years old. For me, this was the scariest of all symptoms. In the back of my mind I figured admitting to ants crawling all over my body would be what finally got me committed to a psych ward. People feel that kind of stuff when they are schizophrenic or on a bad trip. So I dealt with it.

And I dealt with it. And I dealt with it. I’m lucky that I finally found a medication that muted some of my symptoms in college. But it was definitely a half-mute, like what you do when your girlfriend asks you to turn down the football game. It still helped me to function though: the meds in combination with a kick-ass sense of self-awareness that I cultivated over years of therapy and journaling.

Smiling through pain at 15 years old
Smiling through the pain at 15 years old

My self-awareness is what helped me navigate through a variety of incorrect diagnoses that got smacked onto my medical record like big ugly stickers at the dentist’s office. Let’s review them, shall we? There was major depressive disordergeneralized anxiety disorder, panic disorderborderline personality disorderbipolar II disorderspecific phobiapremenstrual dysphoric disorder, and the ever popular seasonal affective disorder. As you can probably imagine, I’m not big on mental diagnoses anymore. In fact, I try to stay as far away as possible. When doctors give you these kind of diagnoses, be careful because you get a big, fat scarlet “A” scratched across your forehead. It’s a packaged deal. You’ll never go into an office again with “just an ear ache.” You will be the “mentally unstable girl with an ear ache” … so you will be questioned about whether or not what you really feel is ear pain. And you can pretty much apply this situation to any complaint you may have in the future.

So you can imagine how my illness played out. Years of “well it seems like you are under a lot of stress, Ms. Herbert. Have you seen a psychiatrist recently? I have the name of one you’d really like.” Years of symptoms that kept accumulating like dirty cockroaches that I’d sweep under my bed. Years of doctors treating me like “a young woman with a pretty rough past.” Years of crying in exam rooms with no answers. Years of hitting a big. fat. wall. All this, while I was acting as a fantastic breeding ground for Borrelia Burgdorferi that would one day show up clear as fucking day on a blood culture.

My body is now a battle ground. I shove antibiotics, herbs, supplements, homeopathics and other prescription drugs into my mouth on a daily basis. Some of them kill the bacteria, which release toxins and make my mental health much worse. These drugs increase the crawling sensation, the panic, the anxiety and depression. They also turn on a massive fog generator that coats my brain in a thick mist. The mist makes me forget basic words like “spoon” and “umbrella.” It takes away my short-term memory and impairs my long-term memory as well. When the generator is on I can’t read, or follow plot lines on television very well. It obstructs basic knowledge I can usually access like “Where am I going?” or “What am I doing right now?”

It’s like I’m driving a car across the Golden Gate Bridge on the foggiest day of the year. I’m squinting. I’m looking for cues that I’m moving in the right direction and not hitting the vehicle in front of me. I can’t see, but I need to keep trying in order to stay safe. 

Sometimes all I want to do is hide under the covers with my bowling ball, my fog generator and my ants. I don’t want to get up and worry about random shit that only happens in nightmares. Sometimes I need to complain about the battle going on inside of me. My internal warrior is incredibly proactive, so advice like “try to appreciate the good things in your life,” or “get up and try to do more stuff” doesn’t feel appropriate or helpful. I’ll never forget when I’d finally mustered up the courage to tell one of my friends in high school about my struggles. She responded with “you’re too pretty to feel that way.” She didn’t know any better … I know. But those words stung. And most Lyme patients have been and will continue to be stung throughout their battles, which is why they might get extra sensitive and angry sometimes.

No more hiding : )
No more hiding : )

The most helpful thing you can possibly do is listen. Listen like you mean it, without looking at a clock or chiming in with a story about your friend’s friend that has lupus or cancer. You won’t be able to feel what we feel, but we will love and appreciate every second you spend with your hand on ours focused on what we are saying. And we want to be there for you too. Even on days when we can’t. We want to get out of bed. We want to breathe like normal people. We want to appreciate all of the beautiful things in our lives. It’s just hard sometimes. Because it sucks in here.

If You Have Lyme, Do Not Paint Your House

My boyfriend and I had one of those nights where the thought of home renovation got us really amped up. We tingled with so much excitement that we cursed Home Depot for not being open at 11:45pm so we could peruse paint samples. This was two weeks ago …

Today I wish we didn’t have that night. The following is a plea to anyone with Lyme NOT to paint your house. Or to take a three week vacation if you really need to paint it so that every last fume has disapated by the time you get home. It doesn’t matter what kind of paint you use … Low VOC, No VOC … It doesn’t matter how many fans you use, windows you open or masks you wear … It will bite you in the ass.

If you read my blog, you know I’ve made progress. You know I’ve reintegrated (somewhat) back into normal society. It got to the point that I almost forgot what intense pain felt like … the bitter pulsing of my body parts twenty-four seven.

Well, I remember now. I remember so well, in fact, that I’m back on the couch with ice packs and a bad attitude. The Irish dance team has returned to my nervous system tapping away atop my most vital nerves, sending vibrations north, south, east and west. It’s a real party. So grab your fiddle. But please don’t paint your house. Even if you think it will look pretty. Because it will. But you will be sick. Okay done.

My Personal Treatment Plan

I believe in holistic healing of our BODY, MIND and SPIRIT. A delicate balance exists between these three aspects of “self.” When one is compromised the other two follow suit. That’s why it is of utmost importance that we address our overall wellness. Swallowing some antibiotics may give us some relief in the short-term, but will not offer total and complete healing. Lyme forces us to our knees, but it also offers us the opportunity to grow and re-examine the way we were living before illness struck.

I, for one, was moving at about 90 miles an hour through life. I would push myself in my job, in my studies and in my personal life. I thought that taking time for myself meant zoning out in front of the television while eating unhealthy treats to numb the stress. Self-esteem played a part too. I would push myself with voices of self-doubt and self-deprication in order to achieve my goals. If I wasn’t perfect, my world turned a horrific shade of grey (not the good “50 Shades” kind ; )).This drained my energy, making me more vulnerable to negative energy. I lacked a strong connection to spirit because of the earthly drama that hit me consistently like storm surges wearing away my core.

Looking back on my life, I’m not surprised I’ve struggled with illness. I continually invited it into my existence. Once it was there, I let it have power over me by fearing it, by identifying with it and by feeling defeated.

I created this healing plan to break that cycle. I have laid it out for you below. It’s sectioned into treatments for each aspect of self. Together they address my health in its entirety. I encourage you to construct your own, tailored to your own personal belief system. You will need to find a Lyme Literate Medical Doctor (and perhaps a naturopathic doctor too) in order to construct a treatment plan for your body. I am not a physician, so please do not use these medications if you are not under the care of a doctor.

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Source: Wikipedia
Source: Wikipedia

BODY

  • Acupuncture
    • This was the first therapy that brought me to a better level of functioning without any medication.
  • Antibiotics
    • To address all three forms of Lyme disease
      • Cell Wall Forms: Amoxicillin, IV Rocephin
      • Cystic Forms: Tindamax
      • Intracellular Location: Azithromycin
    • To address co-infection
      • Plaquenil
  • Herbs
    • Antimicrobial Herbs
      • Nutramedix – Samento
      • Beyond Balance – MC-BB-2 (moved up from MC-BB-1)
      • Beyond Balance – MC-PZ
    • Detox Support
      • Beyond Balance – CLA-K DETOX
      • Beyond Balance – IMN-R
      • Beyond Balance – TOX-EASE
    • Nervous System Support
      • Beyond Balance – CYFLACALM II
      • Stephania Root 
    • Reduce inflammation
      • Gaia – Olive Leaf Extract (huge life-saver!!!)
  • Homeopathic Medicine – BioResource Inc.
    • Nervous System Support
      • PSY-stabil (I swear by this stuff … if you are feeling anxious or nervous, this is great!)
    • Detox Support of Kidneys, Bladder and Urological Tract
      • RENELIX
    • Antitussive and expectorant for chest congestion
      • BRONCHI-PERTU
    • Lymphatic Drainage and Swollen Lymph
      • ITIRES
    • Stomach Support
      •  apo-STOM
    •  Kill Yeast
      • Candida Capsules 
    • Support of Excretion Processes
      • MUNDIPUR
  • Supplements
    • To break biofilms
      • Nutramedix – Serra Peptase
      •  Klaire Labs – Interfase Plus (also good for killing yeast)
    • To Aid Immune Functioning
      • Kind Organics – Prenatal Multivitamin 
      • Ester-C – Vitamin C 
      • Prescription – Vitamin D3
      • Researched Nutritionals – ATP FUEL
      • Researched Nutritionals – Transfer Factor Sensitive
      • Nordic Naturals – EPA EXTRA 
      • Klaire Labs – Endozin
      • Researched Nutritionals – Liposomal Glutathione 
    • To reduce inflammation
      • Pure Encapsulations – Curcumin
    • To reduce yeast
      • NutriBiotic – Grapefruit Seed Extract
    • Probiotics
      • Raw Probiotics – 200 Billion per day
  • Detoxification Methods
    • Far Infrared Sauna
      • 30 – 40 minutes a day (start slow)
      • I use a Finnleo sauna
    • Hyperbaric Oxygen Chamber  
      • 20 – 90 sessions total
      • Click FAQ for more information
    • Yoga or any form of exercise (if you can handle this … I know it’s hard)
    • Bemer Mat
      • 8 minutes two times per day
      • Click on their website for more information
    • Prescription medication – Cholestyramine
      • binds biotoxins
      • also great for mold issues
  • Diet 
    • Identify food allergies!!! Then stay far away from that food, even if your allergy is minor!
    • No sugar
      • I started with no fruit – then moved to one sweet fruit per day when I wasn’t flaring – my inflammation was greatly reduced after I did this
      • Lemons and limes are always allowed
      • I use stevia as sweetener – but start slow as it is a cyst buster so it can irritate you
      • No alcohol (I know … booooo!)
    • Reduced gluten and dairy products
      • I started with zero gluten and dairy, then I worked my way up so I knew what I could handle.
    • Juicing
      • I own a Breville
      • I juice kale, spinach, parsley, cilantro, carrots and lemons daily
    • Apple Cider Vinegar
      • Great for detox
      • 1 teaspoon to 1 tablespoon in water (work up slowly to see what you can handle)
      • Can add Stevia for flavor
      • Check out these drinks … they are allowed!
    • Coconut Oil and Milk
      • Good anti-microbials and anti-fungals
      • Cook with them
    • When I cheat and eat crap … because I do (and you will too) … I keep olive leaf extract on hand, which helps to reduce the inflammation when my infection inevitably flares up. Just a little trick.

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Source: society6
Source: society6

MIND

  • Mindfulness Based Stress Reduction 
    • There are courses all over the United States thanks to Jon Kabat-Zinn and his work at U Mass. I enrolled in a course at Duke University.
    • If you don’t have the money to enroll in the 8 week course, click here to take it for free online.
    • It helps to connect with others who also meditate. A great way to do this is through meetup.com.
  • Guided Meditations
  • Yoga
    • Calms my mind
    • I do it at home when I can’t make it to class
  • Interrupt Your Negative Thought Patterns
    • Meditation has helped me a lot with this
    • I try to do it in a nonjudgmental way – with self-acceptance and self-love
  • Sit Outside
    • I use natural settings to calm my mind
    • I take walks, sit in a chair under a tree, take trips to the beach … a little nature goes a long way
  • Positive Visualizations 
    • I try to envision myself in a completely healthy state as often as possible
    • I’ve made a vision board for my health and happiness by cutting up magazines and pictures. It was fun!

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Source: solpurpose
Source: solpurpose

SPIRIT

  • My Personal Mantra –> I AM WORTHY OF HEALING no matter what religion I study or spirituality I practice (or don’t practice, for that matter). I do not invite others to tell me otherwise.
  • Distance Yourself from Negativity  
    • I had to distance myself from friendships that brought negative energy into my life. It was hard, but by doing it I was able to invite more positive energy into my world for healing.
    • Things I remember:
      • I put my spiritual healing first.
      • Everyone is on a different life path, so not everyone will understand my situation.
      • It’s okay to protect myself through distance.
  • Yoga
    • I use this practice for body, mind and spirit.
    • This is a moving form of prayer for me.
    • The intention I set at every session is “to be totally and completely healed in body, mind and soul.”
  • Regular Prayer
    • I seek the guidance of God, my spirit guides and the angels regularly. If it’s not your bag, baby, don’t worry : ) There are many ways to pray.
  • Recommended Authors (for those interested)

Dear Lyme Fighters

IMG_3072 Dear Lyme Fighters, 

I’m sure you’ve spent the last several months (or years) wondering what is happening to your body. You’ve watched the everyday functioning of your systems slip away. The flight down the stairs that you used to accomplish without a second thought has become a painful obstacle. Your own limbs, now tingly or numb, might as well belong to Mr. Potato Head. And, to make matters worse, your heart, lungs, brain and bladder have gone rogue. You know your body is a sinking ship. You don’t want to hoist up a white flag, yet no one seems to know what to do with you.

The first doctor you see tells you that stress is responsible for your symptoms. You’ve been busy. You have a history of taking on too much. You beg your doctor to run more tests. You know SOMETHING is different. She runs a few blood tests with no definitive answers, so it must be the stress she says with raised brows. When your body springs another leak, you return to your doctor, or perhaps see specialists. You give more blood, watch more shoulders shrug, get more therapy recommendations, cry more tears and receive unnecessary prescriptions to cover up your uncomfortable symptoms like useless Band-Aids. You have no experience advocating for yourself, so you wonder if maybe you ARE crazy. Maybe it’s all in your head.

Then one day you receive confirmation that it isn’t a faux illness. You have Lyme disease. You recognize that the road to a diagnosis looks different for everyone, but you are just glad you finally got there. You cry tears of happiness when you read the results of your lab work because now doctors can finally fix you. (Or can they?)

Your wallet suffers. Your health savings account is bone dry. You cringe as your family loans you money. The good doctors—the Lyme Literate MDs—don’t take insurance. Why? Because they’d never get reimbursed. Chronic Lyme disease is not an accepted phenomenon. To continue on your brave road to recovery, you will need to keep shelling out dollars that you don’t have.

There are nights when your skin crawls and you can’t follow the plot line on Housewives of New Jersey. Your joints throb when you try to change the channel. You throw back antibiotics like Tic Tacs. You rearrange your kitchen cabinets to make room for your herbs, homeopathic liquids, supplements, oils, vitamins and probiotics. You buy a juicer. You throw away your delicious chocolate stash. You invest in an acupuncturist (then make room for more herbs). You take trips to receive halotherapy, sit in an infrared sauna and meditate. Your life is no longer your own. Lyme is the center of your universe. No REALLY … it is. And that makes you feel pathetic.  

But … but … you are not about to wave that white flag, damn it. In fact, you’ve shredded it, and used the pieces to make some insanely awesome warrior costume. Lyme is at the center of your universe, SO YOU CAN CONQUER IT. Are you getting better? Who knows?! But you do know that you are trying. And, frankly, that’s all that matters. So keep kicking ass!

Love,

Sarah

Patience And A Random Bighorn Sheep

ry=480Patience is as hard as the gravel that bighorn sheep is traversing. I don’t know why I chose him for this post … but here he is (or she … sheep sex identification isn’t really my forte). I know I’m a product of Western culture. I’m why Starbucks is still in business. Shameful but true. I want everything at the snap of my fingers, despite knowing that if my wish came true my life would end atop a bowl of bitter-tasting accomplishments.

BUT … BUT …

Everything feels like such an arduous process when patience is at play: fighting to get better, finishing nursing school, finding the right job, washing my hair … ugh! I’m climbing (metaphorically climbing that is … ) a million flights of stairs, and frankly I’d rather schedule a demolition and replace that shit with a giant elevator. You push floor “2” or “20” and you fly up effortlessly past all the painful crap in between … and surprise. You’re here. Oh hey there smiley greeter. Welcome to your destination. Hope the ride was smooth. Here’s a hot towel for your face.

I get it. I really do. I know I can’t take a shortcut (Adam Sandler’s oscar-worthy performance in Click illustrated this point beautifully). I just. want. to.

(I’m going to channel Veruca Salt for a minute.) I want to wake up with a detailed user-friendly instruction manual. At 6:30 am, instead of my iPhone alarm chiming, I’d prefer a message from My Life In Checklists application. A push notification would show up (vocally narrated by Regina, Siri’s smarter cousin from London): Good morning Sarah. Your daily checklist has arrived. Here are the things you need to accomplish today in order to obtain joy and inner peace.  Now start by making yourself a delicious cup of coffee on your new french press. And don’t forget to use lactose free milk. We don’t want any tummy aches now, do we?  

I love how this plays out. Smooth as pie. I’d have so much extra time on my hands without needing to contemplate the big questions … or even the small ones (like should I eat that extra piece of delicious, calorie-packed bread?). I could forget everything I worry about consistently. I could spend my time gardening, or join an a cappella group. I could re-watch episodes of Lost while making a scrapbook for my mom.

I’d check off the necessary tasks to cure my Lyme infection instead of trying something new, being patient, and waiting to see if it worked. Make sure to take the little blue pill, Sarah. That one is bloody important (Regina means business). I’d be guided to do all of the right exercises, eat all the right foods, take all the right herbs or antibiotics. Unbelievably easy! Doesn’t matter if you get sick … EVER … just download the app to get better. What? You haven’t found your soulmate yet? No problem. Here are the steps you should take to find him or her. 10 daily steps to happiness. And another 15 steps to accomplish your life’s mission. Each checked box would feel so good, so right.

Patience would be redefined. It wouldn’t be practiced while floating in the dark waters of the unknown. Instead it would be a light feat that you could easily manage on par with waiting for water to boil or charging your iPhone. You’d know your goal was attainable and approximately how long it would take to get there. I could handle this kind of patience.

Unfortunately this world, with its checklists and the lovely Regina, doesn’t exist. So instead I’m stuck inserting dialogue boxes into pictures of bighorn sheep to illustrate how random I feel my life is right now. Siri will put me to bed, and my alarm will chime tomorrow. I will take my pills with a glass of lactose-free milk (I didn’t need Regina for that one). And I will gracefully wait. Because patience is a virtue. Right?