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.

Why I’ve Become That Crazy Lady At The Mall

I’ve become that crazy lady at the mall. The one that overhears your conversation and chimes in. Yes her. She is me. But, why dear God why have I become her?

Today I went shopping for a dress at Anthropologie to wear at an upcoming wedding. I’m not my best after the IV treatment, so I did a lot of “leaning.” I leaned on the clothing racks, on chairs, the walls and the counter at the cash register. Needless to say, I was leaning on the counter when I overheard a discussion about Lyme disease. The woman buying clothes had just been bit by a tick. She was talking about whether or not to go to the doctor. She’d just had a baby and was concerned about antibiotics getting into her breast milk. So, naturally, upon hearing this predicament, I became “the lady.”

I’m not super outgoing so it was a bit painful to interrupt their conversation without knowing the least bit about either of them. I’m sure I turned a nice bright magenta to go perfectly with the pinky golden dress I was buying.

I told her my story. Gave her a bunch of ILADS facts on rates of infection, subpar testing etc. I urged her to go to the doctor. It just so happened the woman working the cash register had a lot to say as well. Her boyfriend had Lyme … So it made me feel less nusto-pants.

From the look on her face … We scared the bajesus out of her. Note to self: Work on your delivery.

Moral of the story (because there always is one) … I’m proud to be the crazy lady at the mall. I’m not going to tattoo a Lyme awareness ribbon on my cleavage or anything, but I will give people the information that no one gave me. I don’t want you to suffer. At all.

And I might buy a green hat … with sparkles … to get into character next time.

Taking Back My Nervous System with IV Rocephin

IV Rocephin Treatment for Lyme

I feel that I can safely say stage 1 of my treatment has come to a close. I managed a major recovery. I spent money on a yoga pass a few weeks ago, and have even ventured out on a few hikes on level ground.

That being said, I know I’m not in remission due to the ongoing neurological symptoms I still struggle with, as well as the occasional lung flares.

I had my first IV Rocephin treatment today, followed by a Meyer’s cocktail. I felt fine and dandy until a couple of hours ago. When I herx, all my symptoms come flying back as if I was never rid of them, which can be quite frustrating. My blood pressure is up, nerve and joint pain are at an all time high, in addition to muscle twitching and shortness of breath. I’m staring at the clock with a bunch of ice packs on my chest and arms. To fight Lyme, you have to brace yourself. The bugs don’t go down without a fight!!

Anyone reading this who might be losing hope, please don’t. I’m soooo much better than I was and you will be too. Everyone heals at their own pace. Herxing stinks … It just does … Any way you slice it. But just remember that you have to go down a couple flights of stairs to climb higher than you were before.

Q&A on Hyperbaric Oxygen Therapy for Lyme Disease: My Personal Experience

What is hyperbaric oxygen therapy?

HBOT is a medical treatment in which a patient breathes one hundred percent oxygen in a pressurized chamber.

That sounds a little bit Star Trekky to me.

It is.

What does the pressurized chamber look like?

The one in the office I visited looks like a mini submarine. Different models exist, however. Some are transparent, human-sized tubes that remind me of what my guinea pig used to play around in as a kid. Some are so large that multiple people can kick back and get their oxygen fix together. Portable models can be found online too.

The chamber in which I receive my therapy has a small yoga-type mat, providing a little squish for my tush. I have enough room to sit up and move around. I’m able to change positions frequently.

So what exactly is a “pressurized chamber”?

A “pressurized chamber” is a place in which atmospheric pressure is increased.

I was not a good physics student. What is atmospheric pressure again?

National Geographic provides a great explanation: “The air around you has weight, and it presses against everything it touches. That pressure is called atmospheric pressure, or air pressure. It is the force exerted on a surface by the air above it as gravity pulls it to Earth.”

All the air above us right now is pressing down on us due to gravity. This pressure contributes to pushing air into our lungs and squeezing oxygen out into our bloodstream. When you climb a mountain, atmospheric pressure drops. Air is less dense the higher you go. In this situation, with a drop in pressure, less air is pushed into our lungs and less oxygen is squeezed into our bloodstream. This can result in that dizzy or nauseous feeling you get in high altitudes because your body is deprived of its normal oxygen level.

Okay, I think I get it. But, I thought you said that you are in a chamber with more pressure, not less.

You are right. Let’s flip this idea around now. What if you were in an area with higher atmospheric pressure than normal? You would get more oxygen, right? In this situation, a greater amount of oxygen would be pushed into your lungs, squeezed into your bloodstream and carried to your tissues.

And you just breathe air in the tank?

It’s not the regular air you breathe outside, comprised of only 21% oxygen. You actually breathe 100% oxygen in the tank. The purity of this oxygen combined with increased atmospheric pressure means you will be getting 10 times the regular amount of oxygen you breathe normally when you are in the chamber.

Do you use a mask in the tank to breathe the oxygen?

Some facilities use masks. My doctor’s office uses a real jazzy-looking hood. This is the model. Take a look: http://i.ytimg.com/vi/tfBDJIDtE9Q/maxresdefault.jpg

How do they get that on you? Is it uncomfortable?

When I went in the first time for a treatment they fit the hood to my head by cutting a hole in the rubber circular base, which feels a lot like a swim cap. They then squeezed the hole over my head. Once it was on, I looked at myself in the mirror (because I do this kind of stuff at the doctor). I decided it was a great look. Made me feel like an intergalactic explorer of sorts. We had to adjust my astronaut cap a few times because the rubber had a tight grip around my neck. It shouldn’t cut off circulation or feel extremely uncomfortable. Once it was fit correctly, it didn’t bother me at all.

The tubes in front are responsible for transporting air in and out of the hood. The oxygen comes into the hood from one plastic tube and the CO2—released upon exhalation—is carried out by the other. When the oxygen starts flowing the hood expands like a giant bubble.

I got it. You do all of this stuff to get a bunch of oxygen in your body. I’m still confused as to why this is used to treat Lyme disease?

This is an off-label use for hyperbaric oxygen therapy, but many Lyme patients have responded very positively to this form of treatment. The spirochete that causes Lyme disease is an anaerobic bacterium. This means that it cannot survive in an environment rich in oxygen. By increasing oxygen levels in your body, you will cause the bacteria to die. Additional benefits include repair of tissues damaged by the disease, and a boost to your immune functioning.

Sounds great. So you stopped your antibiotics right?

No. For me, this is a complimentary therapy. I make sure to continue my antibiotics and other medication as prescribed. Next week I will be receiving IV antibiotics right before I go into the hyperbaric oxygen chamber. This will help my tissues to absorb the medication.

Is the treatment expensive?

Yes. Your insurance may or may not cover it for you. Most facilities charge around 200$ per session out of pocket. In order for the treatment to be effective, you will need to do between 20 – 90 sessions. It really varies based on the patient. I gathered this information from various sources online (and the clinic where I receive my treatments).

That’s a lot of money. Do you think it’s going to be worth it for you?

I made the decision to try it based on the recovery stories I’ve read and listened to over the last year. Many individuals with Lyme attribute their remission to HBOT. I’m sure this isn’t the case for everyone, but I’m hopeful. Due to the fact that I received my diagnosis late in the game, have neurological symptoms and have at least one co-infection … my philosophy is to treat with all guns blazing. I’m comin’ in hot bacteria so watch your back.

Treatment for tick borne infection is expensive any way you slice it. My health, to me, is priceless. I’m going to treat and then worry about everything else later. I know that not everyone else can say that but I’m fortunate enough to have some support and I’ve only been in active treatment a little over six months (finances, I’m sure, look a lot different at six years).

Was the treatment uncomfortable for you?

I was incredibly nervous going into it. I’m a loony bird. I research everything to death, and then past death. I go through possible risks and then I imagine what my plan of attack might be if said risks were to actually occur. If you google HBOT you will read the risks. Your medical center will also make you sign your life away, but here’s the thing … I had a long chat with my doctor about all of the possible issues and what I took away from our conversation was that major issues from HBOT for Lyme are quite rare. She’s never had a patient that experienced any major medical issue as a result of the treatment.

In my clinic, they always check my ears before and after treatment to make sure they are okay with changes in pressure. Some people experience ear discomfort. If you are congested there are medications physicians can provide you in order to prevent ear pain. For me, my ears felt like I was sitting at the bottom of a pool in the deep end. I tried to move my jaw and pop my ears frequently, which helped. But overall, it didn’t really bother me that much. The nurse at my clinic changed the pressure in the chamber at a very slow rate, which allowed me to adjust smoothly.

My main issue was fear itself. In the tank you need to remain calm. I always get a little freaked in confined spaces. One time I had an MRI, and I remember having a panic attack even though I was listening to the Beach Boys (who panics while listening to Surfin’ Safari?). I found that meditative breathing followed by multiple games of Sudoku eased my anxiety tremendously. Once I got through my first session, I was much calmer. There was a small window in the chamber that the nurse looked through in order to communicate with me. We wrote notes back and forth to one another. She was so supportive.

After the treatments were over I had incredible exhaustion. Like can’t-keep-your- eyes-open exhaustion. I also experienced an increase in the feeling of vibration all over my body. I have yet to explain why. I will be going back to do more treatments consistently in the future, so I will update you when I get more data ; )

How long are you in the tank?

I’m in the tank about two hours. The first 30 minutes the tank’s pressure is increased. There’s an incredibly loud noise as gas flies into the chamber. Expect to be startled. I don’t have to wear the oxygen hood during this time. Once we reach the proper atmospheric pressure (usually between 2.5 – 3.0 ATMs depending on your clinic), I slide on my astronaut cap. I then hook both tubes to their outlets. I breathe pure oxygen in the inflated bubble for one full hour. Once I’m finished, I remove the hood and the nurse decreases the pressure over the course of another 30 minutes.

What do you do while you are in there?

I alternate between meditative breathing and Sudoku. Other activities you may want to try: reading a book, drawing or any form of paper-based entertainment. I’m not allowed to bring ipads or electronics in the chamber with me. Some centers do allow this though … depends where you go.

What if zombies attack the office staff while you are in the chamber? Are you stuck in there forever? I’ve heard it can be really dangerous if the pressure isn’t changed slowly … this is totally freaking me out right now.

If the zombiepocalpyse happens while you are in your treatment, do not be concerned. I take that back. Do be concerned, but not about being stuck in a pressurized chamber. There are controls within the chamber that medical professionals will show you how to operate in case of an emergency. You can let the air out yourself at a slow rate. Then you can face the zombies when you are at regular atmospheric pressure.

New Treatment for Lyme: Not Your Average Infection

Lyme isn’t your average bacterial infection, so treatment plans are usually only effective for so long. In addition, my doctor believes I’m suffering from at least one co-infection (aka another tick borne illness like babesia or bartonella). So our plan for now involves swapping the amoxicillin for plaquenil (a common treatment or preventative for malaria). I’ve taken this once before while traveling. I completely forgot the vivid dreams that come along with its consumption. I call them “technicolored hallucinations” because they are unlike the hazy scenes that normally accompany my sleep. While this could be a recipe for disaster, I’m lucky that my trippy slumber has only produced soul-pleasing entertainment with some top notch visuals. Last night I mentally visited various townhouses, only to discover that the ceilings were actually expansive galaxies: midnight purples and blues caked in sparkling stars … magnificent.

I’ve definitely herxed on this medication, with increasing amounts of pain in my joints. Herxes are always bitter sweet. I know that bad shit is dying, but my body usually takes a dive and I lose my regular functioning. My lungs seem to be less affected this time though, which is a bonus. I’m pretty jazzed that I can walk small amounts without huffing and puffing on other pedestrians in my path.

Due to my ongoing neurological issues, I will be starting IVs once weekly of Rocephin. My doctor will increase this IV treatment up to 2-3 times a week if I tolerate it. Then I will start back on the hyperbaric oxygen chamber. I will climb in right after my IVs to give the artful bacterial poos a real run for their money (P.S. I’m sorry I didn’t post more information on HBOT … I’m working on it right now).

With all this medication, I have frequent blood tests in order to make sure my liver and kidneys are functioning well. I’ve rocked all tests thus far! Yippee.

Dear Lyme, You Will Not Win.

Dear Lyme,

I did an hour long meditation last night. During the meditation I focused on my body and you, my disease, as separate entities. I envisioned my body as completely clean, free and healthy. I then envisioned you next to me, not inside of me. You floated freely, but I did not allow you to enter.

I rejected you. I rejected the notion that I am sick. I rejected my pain.

I embraced healing. I embraced my natural health. I embraced my functioning body.

As you know, I made the choice to jog today (some might call it walking while sweating profusely … whatever). I kept it up for 20 straight minutes, while I separated from you … flying further and further away from your negative energetic vortex. So you know, tomorrow I’m shooting for 21 minutes.

Yours truly.

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