Tag Archives: Lyme

Stop the Music! How to X Out the Songs and Words That Keep Playing in Your Head

by Jennifer Crystal

Don’t play that song—it’s going to get stuck in my head.”

We’ve all said this before. We’ve all heard some catchy tune that plays over and over in our heads for hours, maybe even for the day. Eventually, other thoughts and songs drown it out, the song passes to the background, and we forget it was ever an annoyance. Such songs are referred to by doctors, particularly neurologists, as ear worms. They are harmless.

But what if the song doesn’t get unstuck? What if it played for days, weeks, even a month? And what if another song started playing over it, and then another, and then another, until your brain felt like a DJ mashing tunes on repeat, ad nauseam? That’s called song iteration, and it can be a maddening symptom of neurological Lyme disease.

Songs are not the only thing that can get stuck in a Lyme patient’s mind. Words can play on repeat, too. This is called word iteration. Sometimes the words play like a narration under the songs. It’s like reading a book with four songs playing at high volume. What causes these symptoms, and what do they feel like? Most importantly, how can a Lyme sufferer get the iteration to stop?

When Lyme crosses the blood-brain barrier into the central nervous system, the bacteria, called spirochetes, burrow their way into the brain. Since Lyme is an inflammatory disease, this causes encephalitis, which is often revealed in Lyme patients on a brain scan. At the height of my illness, a SPECT scan showed inflammation on the left side of my brain. Sometimes I could actually feel the swelling. There was so much pressure in my head that I worried unrealistically if it might explode out of my skull.

Lyme invasion of the brain can cause a host of neuropsychiatric symptoms, including word loss (aphasia), brain fog, hallucinogenic nightmares, insomnia, anxiety, depression, mood swings, rage, confusion, and obsessive thoughts or obsessive compulsive behaviors—such as obsessively thinking about words or songs. To be quite clear, these obsessions are not a conscious choice of the patient. That is, the patient is not consciously obsessing over anything. Their compromised brain function is causing these intrusive, repetitive sounds and thoughts. My doctor referred to it as “the needle being stuck” on an old vinyl record.

When I first started intravenous antibiotics, my neurological symptoms actually increased. My doctor’s office had a fountain in the reception area. At first, I found the sound of the trickling water soothing. After a few months of being on IV, that sound drove me crazy. Everything I heard seemed too loud. The gentlest of noises grated on my brain, only adding to the cacophony that I couldn’t shut off. The antibiotics were chasing the spirochetes deeper into my central nervous system, causing this increase of symptoms. While this seemed counter-intuitive, my doctor assured me it meant the antibiotics were working. If I hadn’t used them, the symptoms would have worsened, with nothing to combat them.

The other reason the symptoms worsened was because I was having Jarisch-Herxheimer reactions, which means the antibiotics were killing off the spirochetes faster than my body could eliminate them. This caused a build-up of toxins in my brain, which temporarily increased swelling and worsened neurological and psychiatric symptoms.

At that point, I couldn’t sleep for weeks. I would try counting sheep and singing lullabies in my head, but soon I had numbers counting out beats to “Twinkle, Twinkle, Little Star” and “Hush Little Baby” simultaneously. During the day, any thought I might have would repeat itself at least twice. When I did sleep, I heard a narration in my dreams.

I am a writer, but I could not take the wordiness let loose in my head. I felt insane.

My doctor told me to stay the course of the intravenous antibiotics, and I’m glad I heeded that advice. Eventually, more and more spirochetes died off and were eliminated from my system, and slowly my horrible symptoms abated. The brain fog lightened. I could read again. And blissfully, the iteration quieted. It didn’t completely go away, but now I would only have one song in my head at a time, and my thoughts would not repeat. The needle had become unstuck. The record was playing again, albeit at a slow speed.

There are adjunct therapies that help detox the dead bacteria and quiet the iteration. Integrative Manual Therapy, especially cranial-sacral therapy, opens up the lymphatic drainage from my head. “Your brain gets backed up,” my practitioner sometimes still says, and his techniques release that pressure. Neurofeedback has also helped train me to work better and rest better. It’s allowed the songs and words in my head to play in the background noise rather than the forefront.

Now in remission on a low dose of oral antibiotics, a host of supplements to keep my immune system strong, and a schedule that keeps my neurological symptoms at bay, my word and song iteration is much better, though not entirely alleviated.

I still always have a song in my head. I wake up with a random one every day. Sometimes it changes throughout the day, sometimes it doesn’t. It’s always there, but I don’t really notice it; it’s like ambient noise. When I get overtired, I do start to think of thoughts repetitively and obsess over things, and that tells me it’s time to rest or maybe even change up my medications. At these points the narration of my dreams picks up, too, but a neurofeedback session usually quiets that again. “Signs of a well-trained brain,” my practitioner says calls it.

Antibiotics and therapies haven’t trained my brain to silence, but part of having a chronic illness is learning to lessen and work around certain symptoms rather than hoping for a stoppage that cannot be done. Sure, I’d love for the iteration to go away completely, and will keep working with my doctors to try to make that happen. But in the meantime, I keep humming along.


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She has written a memoir, One Tick Stopped the Clock, for which she is seeking representation. Contact her at: [email protected]

lyme education

Lyme Education: Middletown, NJ

Psychiatric Manifestations of Lyme and Other Tick-Borne Diseases in Adults and Children: An Overview

Dr. Robert Bransfield, Clinical Associate Professor of Psychiatry at Rutgers-Robert Wood Johnson Medical School, is a foremost expert on how Lyme disease affects the brain.

Presentation is sponsored by the Monmouth County Mental Health Association.

Date: May 14, 2019
Time: 7:00 pm
Location: Middletown Library, 55 New Monmouth Rd, Middletown, NJ 07748
Tickets: Open to the public

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Lyme Education: Sacramento, CA

Sacramento Lyme Picnic with Dr. Jamie Kunkle 

Celebrate Lyme awareness month and socialize with local Lyme community with this year’s annual Sacramento Lyme Picnic! Bring (chosen) family, friends, and food and chat with other Lymies!

Date: May 5, 2019
Time: 12pm – 3pm
Location: Rusch Community Park, 7801 Auburn Blvd., Citrus Heights, CA
Learn more: https://www.facebook.com/events/2131294173573594/

Chronic Lyme Disease Series: Chelsea’s Story

Reprinted with the permission of itslyme.com
#MyLymeLife

My Lyme disease story starts two years ago.

At 27 I was fully devoted to my career and would blow off steam from a long day’s work at a kickboxing class 2-3 times a week. It felt good to release negative energy after a stressful day. But in April 2015, I started missing regular workouts because I just couldn’t shake the flu. I had a scratchy throat, mild fever, swollen lymph nodes, muscle aches as well as sudden bouts of vertigo. This would come and go for a few days at a time but I would never actually get sick.

As the months dragged on my health did not improve and my energy was dropping. I couldn’t stay late at work when my job demanded it and would limit social engagements. I felt like my body was telling me, “You’re not getting enough XYZ!!”. If only I could figure out what XYZ was – surely I’d feel better. My new family doctor, a female, thought I was being dramatic and ordered some routine blood tests and a physical exam to quell my fears. It turned out I was deficient in Vitamin D, a common ailment in our cold Canadian climate. I started taking a supplement and carried protein bars since I was also borderline hypoglycemic. Years later I would find out that reactive hypoglycemia is common in Lyme-MSIDS (Multiple Systemic Infectious Disease Syndrome) patients (Horowitz, 2017).

My bloodwork had come back with a positive Mono-spot test.

Despite my Vitamin D levels increasing and eating smaller, more frequent meals I still didn’t feel like myself, so I kept at it. After a few more rounds of blood work and months later, my family doctor called to say she had some results. My blood work had come back with a positive Mono-spot test. Little did I know, my positive Mono test and host of seemingly unrelated symptoms was a hint at something larger and much more dangerous. Many of us carry viral infections without knowing it and being infected with Lyme disease (and other co-infections) can cause a reactivation. Epstein-Barr is one of the most commonly reactivated viruses. (Horowitz, 2017)

I took about a month off work to recover from Mono. This would help subdue my dizziness but my health would continue to decline over the next nine months. When my symptoms were at their worst, my exhaustion would result in difficulty walking or standing for more than a few minutes. This would later be diagnosed as POTS (Postural Orthostatic Tachycardia Syndrome) which is a form of autonomic nervous system dysfunction. It explained my uncontrolled blood pressure, dizziness especially after standing, brain fog and some of my digestive issues.

My family doctor was tired of listening to my complaints and ran out of specialists to send me to (six in total). Blood tests, MRIs on both my brain and stomach, neurological exams, echocardiograms, Holter monitors and plenty of EKGs – all came back fine. I also investigated other options including the Mayo Clinic, which turned me down. Best Doctors, a second-opinion medical service available through my insurance, diagnosed me with Somatization disorder (it’s all in your head disorder). The only hints in my bloodwork were a consistently raised ANA (anti-nuclear antibodies), elevated liver enzymes and deficiencies in B12, Zinc and Vitamin D, suggesting my body was over-worked and fighting an unknown intruder.

It had taken nearly two years to receive a proper diagnosis for the many symptoms that ailed me

In the fall of 2016, I decided to see a Naturopath and she wanted us to take Lyme Disease seriously, despite the fact I had tested negative multiple times through the provincial testing protocol in Canada (which is famously unreliable). I sent my blood away to California (IGeneX labs). My result was positive for Lyme Disease and Ehrlichiosis (caused by various types of Ehrlichia formerly called HME, human monocytic ehrlichiosis; the severity of the disease can range from mild to life-threatening. It had taken nearly two years to receive a proper diagnosis for the many symptoms that ailed me, but it made so much sense when I began to educate myself. My body had been under attack and was crumbling under the pressure. Due to the prolonged emotional and physical stress of those two years, my adrenal system was extremely fatigued, further worsening my sleep, hypoglycemia, and energy. After starting treatment with a Lyme-literate doctor I was also clinically diagnosed with Babesia and Mast-Cell Activation Disorder.

If it wasn’t for my Naturopath I don’t know where I’d be today. I hope that by telling my story someone else will be saved the pain I was caused by Doctors and Specialists who brushed me off and misinformed me about Lyme Disease. Always listen to your body and trust your instincts. Keep searching until you find the answers you deserve.

Chelsea’s Symptom Breakdown:

First onset symptoms: Dizziness, vertigo, lightheadedness, fatigue, feeling ‘rundown’, sore throats, migraine aura, swollen lymph-nodes, hypoglycemia

Recall tick bite/bullseye rash? No; possible rash

Chronic Lyme disease symptoms: Extreme fatigue, insomnia, POTS, low-grade fever, poor circulation, brain fog, stumbled walk, muscle aches, sore throats, inflamed gums, migraine aura, heart palpitations, heart block, heart murmur, low BP/high BP, difficulty breathing/shortness of breath, stiff joints, heightened anxiety, phantom sounds (between sleep and awake), difficulty remembering common words

Diagnosis before Lyme  disease: Mononucleosis, B12 deficiency, Somatization disorder, anxiety

Lyme Disease and co-infections diagnosed by:  Blood test through multiple labs in the USA (IGeneX and MDL) as well as clinically with a Naturopath, also receiving treatment for adrenal fatigue, mast cell infection, and Babesia.


Chelsea is the creator of itslyme.com. Chelsea’s treatment is ongoing and she looks forward to returning to work in the coming months. She is hopeful for a 90-100% recovery and thankful to the Lyme community for the support she’s received.

 

References

Horowitz, R. I. (2017). How Can I Get Better? New York: St. Martin’s Press.