Archive for the ‘Psychological Aspects’ Category

16-Year-Old Boy With Lyme Disease Presenting as Depression

https://danielcameronmd.com/16-year-old-boy-lyme-disease-presenting-depression/

16-YEAR-OLD BOY WITH LYME DISEASE PRESENTING AS DEPRESSION

Adolescent with Lyme disease and depression holding his head

There has been increasing research linking COVID-19 with the development of neuropsychiatric symptoms, including depression and anxiety. But multiple studies have already found an association between other infections, such as Lyme disease, and the onset of depression.

 

One study found a high prevalence of depression in Lyme disease patients. Between January 2008 and December 2014, 1 in 5 patients treated at the Lyme Center Apeldoorn in the Netherlands was diagnosed with depression and Lyme disease. ¹

Meanwhile, Dr. Robert Bransfield, a psychiatrist specializing in the diagnosis and treatment of tick-borne illnesses, reports “In my database, depression is the most common psychiatric syndrome associated with late-stage Lyme dis­ease.

I estimate that there are at least 1,200 people per year who commit suicide as the result of Lyme disease,”  Bransfield writes in his article “Suicide, Lyme and Associated Diseases.” ²

Borrelia burgdorferi, the causative agent of Lyme disease, “may be diagnosed as a persistent infection with immune suppressant and evasive capabilities or there may be a postinfectious process,” Bransfield writes. “In either case, the psychiatric symptoms are associated with an immune-mediated process.

Brian Fallon, MD, director of the Lyme and Tick-Borne Diseases Research Center at Columbia University, describes the case of a 16-year-old adolescent who presented with long-standing depression, which suddenly worsened.³

Neuropsychiatric symptoms

He reported anger, frustration, insomnia, poor appetite, mild weight loss, and passive suicidal ideation. He would say, “I wish I could just die in my sleep.”

The boy complained of brain fog and had a steep decline in cognitive abilities. His symptoms were initially presumed to be caused by “either laziness or mild depression.” He suffered from ongoing knee pain and was forced to quit sports.

His grades dropped from “A’s” in 7th grade to nearly failing by 10th grade. He suffered from fatigue and forgetfulness. “He appeared lazy because he found it hard to get out of bed in the morning,” Fallon writes.

The boy’s symptoms were extensive and included:

• severe headaches
• facial fasciculations, myalgias
• stiff neck
• hyperacusis
• episodic paresthesias of his face and hands
• sudden sweating
• painful joints
• sore throats
• palpitations
• electric shock-like pains
• word-finding problems, such that it was hard to finish sentences
• semantic paraphasias
• short-term memory problems, such that he could not recall conversations
• testicular pain

Since he reported having embedded ticks in the past, Lyme disease was clinically diagnosed “given the suspicious clinical history.”

His Lyme ELISA results were negative twice in the prior 3 months, but his IgG Western blot revealed 4 of the 5 requisite CDC specific bands. A brain SPECT revealed findings consistent with encephalitis, vasculitis, and Lyme disease.

Treatment response

The boy was diagnosed with probable Lyme encephalopathy and treated with 12 weeks of intravenous ceftriaxone.

He improved on sleep, appetite, headaches, joint pains, numbness, distractibility, short-term memory, and emotional behavior. His depression cleared without the need for antidepressant medications. His IQ improved by 22 points, and his school performance markedly improved.

References:
  1. Zomer, T.P., et al., Depressive Symptoms in Patients Referred to a Tertiary Lyme Center: High Prevalence in Those Without Evidence of Lyme Borreliosis. Clin Infect Dis, 2017. 65(10): p. 1689-1694.
  2. Bransfield RC. Suicide and Lyme and associated diseases. Neuropsychiatr Dis Treat. 2017;13:1575-1587. Published 2017 Jun 16. doi:10.2147/NDT.S136137.
  3. Fallon BA, Kochevar JM, Gaito A, Nields JA. The underdiagnosis of neuropsychiatric Lyme disease in children and adults. Psychiatr Clin North Am. 1998;21(3):693-703, viii.

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**Comment**

If there was ever a great example of the importance of Lyme/MSIDS being clinically diagnosed, this is it!

This poor teenager would have continued spiraling down until he might just have achieved his wish of dying.  

This study points out a number of things parents and doctors should be considering:

  1. The plethora of symptoms that suggest a systemic infection(s)
  2. The drop in grades
  3. The stiff neck (few things cause this – but it’s hallmark for Lyme)
  4. The fact antibiotics helped so many of the symptoms – including the depression – without any antidepressants
  5. He was seronegative – and so many are.  Doctors have to stop relying upon testing to diagnose this and must become more educated on tick-borne illness.
The CDC just upped numbers again from 300,000 to 476,000 new cases of Lyme diseases per year – highlighting the fact this plague is serious, isn’t going away, and something needs to be done about it.

For more:

We can be thankful he fell into the hands of Dr. Fallon or this young man would most probably not had a favorable outcome.

Two Much Lyme Podcast

https://globallymealliance.org/two-much-lyme/

By Julia Allyn & Madison Pinckney

Welcome to the Two Much Lyme podcast!

Hosts Julia and Maddy both live with late-stage Lyme disease. Their conversations focus on the challenges of living with chronic illness through multiple stages of life, including college and early career. The podcast is in partnership with Global Lyme Alliance (GLA). Julia and Maddy will highlight personal Lyme stories and experiences along with GLA initiatives, like the research we fund, and interviews with Lyme-literate doctors to provide multiple perspectives on this complex disease.

Listen on Apple
Listen on Spotify

To connect with the hosts of the podcast
Instagram @two.muchlymepodcast
Website www.twomuchlymepodcast.com


Opinions expressed by contributors are their own.

About Julia Allyn
GLA Lyme Education Ambassador

Meet our co-host, Julia!! Since being officially diagnosed in October of 2017, Julia has struggled with chronic Lyme disease, Bartonella, Babesia, B. miyamotoi, chronic fatigue syndrome, Hashimoto’s, Addison’s disease, PANDAS, post-concussion syndrome, cPTSD and several other complex syndromes. Julia is currently getting a master’s degree in applied clinical nutrition to pursue a career working in integrative nutrition and medicine specializing in Lyme and autoimmune patients. She is also a Global Lyme Alliance ambassador focusing on spreading awareness on tick borne diseases. Today, she lives in Colorado with both her therapy dog and boyfriend. She is working with several health care practitioners to continue healing and the fight.

About Madison Pinckney
GLA Lyme Education Ambassador and Peer to Peer Mentor

Meet our cohost, Maddy! After struggling for 10 years, Maddy was finally diagnosed with neurological Lyme disease in 2018. Since her diagnosis, she has struggled with Babesia, Bartonella, Anaplasma, Mycoplasma, dysautonomia, PANDAS, epilepsy, PTSD, and other chronic diseases. As a Global Lyme Alliance Ambassador she aims to educate and spread awareness about a disease that so many spend years suffering with before receiving a diagnosis. She is planning on attending law school next year to study public health law to advocate for those with chronic illnesses, while pushing for the better treatment of Lyme patients. Maddy currently lives in Upstate New York working on her Lyme blog @maddymeetslyme while undergoing treatment.

Lyme on the Brain Podcast

https://www.lookingatlyme.ca/2020/09/discussing-the-effects-of-lyme-disease-on-the-brain-with-dr-leo-shea/

Looking at Lyme, episode 10 with Dr. Leo Shea.

Discussing the effects of Lyme disease on the brain with Dr. Leo Shea III

Podcast here:  https://cdn.transistor.fm/file/transistor/m/shows/17123/4e5cfc06b6c30614524aece0c20d9371.mp3

In this episode Sarah talks about the effects of Lyme disease on the brain with Dr. Shea, a senior staff psychologist, professor and President of Neuropsychological Evaluation and Treatment Services in New York City and Boston. Dr. Shea starts off by explaining many of the effects that Lyme disease has on the brain including the ability to process information, changes in memory, multitasking and high level reasoning. He also explains the importance of understanding the effects on the brain and mental health in terms of what is going on physically to cause these changes. He uses neuropsychological evaluation to measure changes in a person’s cognitive, emotional and behavioural function as a result of Lyme disease. Dr. Shea also notes that results of imaging tools such as a SPECT scan often reflect findings in neuropsychological testing in patients.

“When it does get to the brain…it reduces the person’s ability to function, not only in their general daily life, but certainly in their professional or academic life.”

Dr. Leo Shea

We are introduced to the concept of psychoeducation: educating families, teachers, and employers to better support Lyme patients at home, in school and in returning back to work. Dr. Shea gives a few examples of how students can be supported in their learning. He talks about the added social burden that pediatric and adolescent patients experience within their peer groups, and the implications for those patients. Dr. Shea also touches on the challenge that people with dark skin have in getting a diagnosis of Lyme disease in part due to the different appearance of bites and rashes on darker skin tones.

“Psychoeducation is important so that everybody has an understanding of what this patient is going through and what their role is in supporting the patient”

Dr. Leo Shea

Dr. Shea describes the preceptorship program for physicians through ILADEF, where they are mentored by physicians with many years of experience treating patients with Lyme disease. These physicians (who have treated many Lyme disease patients) have gained a wealth of knowledge and clinical experience that they are able to share. He leaves us with a reminder that much more research is needed in the area of Lyme disease and other tick-borne illnesses.

Related resources

“There’s a need for an enormous amount of research into this so that we get a better understanding of not only Lyme, but all the other tick-borne illnesses”

Dr. Leo Shea

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Living With Lyme Brain

https://globallymealliance.org/living-lyme-brain/

by Jennifer Crystal

SHORT-TERM MEMORY LOSS, CONFUSION, BRAIN FOG, AND WORD REPETITION ARE JUST A FEW SYMPTOMS OF LYME BRAIN EXPERIENCED BY MANY LYME PATIENTS. HOW HAS LYME BRAIN AFFECTED YOU?

Listen to the audio version of this blog here:

I was recently talking on the phone with a friend who is expecting a baby. “I’m so sorry I didn’t call you back earlier,” she said. “I can’t remember anything these days. It must be ‘pregnancy brain’!”

I knew what she meant. I’ve experienced “Lyme brain,” and the symptoms are similar. Throughout my 20-year battle with Lyme and other tick-borne illnesses—eight of which were undiagnosed and untreated—I have wrestled with shortterm memory loss, confusion, brain fog, word repetition, difficulty retrieving vocabulary, and a tendency to mix up words. Other neurological symptoms have included insomnia, hallucinogenic nightmares, migraines, burning extremities and mini seizures.

It’s hard to explain the neurological component of Lyme disease to people who haven’t experienced it. Most people know Lyme causes joint pain, and it does. But when it goes undiagnosed for too long, the bacteria can replicate and cross the blood-brain barrier, invading the central nervous system. A scan of my brain showed that the tickborne parasite babesia was preventing me from getting oxygen to the left side of my brain. The scan also showed lesions caused by Lyme.

But that scan was done years after my initial tick bite, years after I’d first noticed that my hands trembled when I tried to apply eyeliner, years after doctors had written off my migraines as “altitude sickness” or “stress.”

blog_JC_lyme brain_1

Unfortunately, my story is all too common. The neurological symptoms of Lyme disease are some of the most confused with other illnesses. Besides the brush-off diagnoses I received, patients are often misdiagnosed with multiple sclerosis, Parkinson’s, and/or mental illness. Without proper diagnosis, neurological Lyme disease can lead to paralysis, schizophrenia and even death.

I was one of the lucky ones. My sleep disturbances were unbearable at times, but my day time neurological troubles never got worse than brain fog and word loss. So what did that actually feel like? Imagine molasses seeping through your brain, pouring into all the crevices until your brain feels so full that you wonder if it will explode right out of your skull. Imagine that thick substance sticking to the synapses of your brain, dulling your thoughts, slowing your ability to put those thoughts into words.

It became impossible to read or watch TV. Just skimming the opening paragraph of an article left me confused and frustrated. Sometimes I’d be telling a story to my family—something as simple as, “I ran into an old friend at the pharmacy today”—and I’d stop mid-sentence and ask, “What was I talking about?” I had no memory of what I’d just said or what point I was trying to make. I also sometimes mixed up the syntax such as, “I ran into a friend old at the pharmacy today.”

Other times, I couldn’t come up with basic words. While telling my family that story I might say, “I ran into an old friend at the…at the…at the blank today.” I knew that “today” came after the word I was trying to say, but I couldn’t fill in the blank. Usually whomever I was speaking with could fill it in for me, but I was nervous about that happening in public. I’d be at the pharmacy and suddenly not be able to come up with my zip code when prompted by the pharmacist. Sometimes the word or number would come eventually, as if my brain had done a Google search. Other times I would just try to laugh it off, saying something like, “Wow, I must be really tired today!” I wished I had the more obvious excuse of “pregnancy brain.”

As a writer, I have always been exacting in my vocabulary. Losing the ability to come up with precisely the right word was humiliating. Words are my currency, and I was broke.

Luckily, the antibiotics started beating out the spirochetes in my brain, and slowly things improved. Soon I could read an entire magazine, as long as I stopped in between articles to sit quietly and let my brain rest. Eventually, I could type multi-paragraph emails. The word repetition fortunately decreased. I worked my way up to attending graduate school, writing papers and essays —thinking again at a high level.

blog_JC_lyme brain_2

These days, I still wrestle with some neurological symptoms especially when I’m tired. Recently I was writing a chapter of my next book and called my mom to say, “I’m thinking of a word that sounds like ‘synonymously’ and means two things happening at the same time.”

“Simultaneously,” she quickly said. I smiled, filled in the blank, and continued writing.

While working on my book, I’ve been doing some prompts with a writing group to help generate material. Recently we wrote about things we’ve lost and found. “I’m writing about losing my mind,” I told my mother.

“How do you know you’ve found it?” she joked.

I know because I can write about my experiences with some distance, using exactly the words I want. I know because I can teach. I know because I can read student essays and newspaper articles. I know because I can read entire books—albeit slowly—and I’ve even written one, too. And in the rare event that  I can’t think of a word, I know I can always call my mother.


jennifer-crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick borne illness. Contact her at jennifercrystalwriter@gmail.com

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For more:

Don’t Medically Abandon People With Neurological Lyme

https://www.lymedisease.org/why-abandon-neuro-lyme/

LYME SCI: Don’t medically abandon people with neurological Lyme

By Lonnie Marcum