Archive for the ‘Psychological Aspects’ Category

Neurological & Cognitive Issues From Lyme Podcast

https://www.lymedisease.org/podcast-shelley-ball-neurological-lyme/

PODCAST: Neurological and cognitive issues from Lyme

By Fred Diamond

On this week’s Love, Hope, Lyme podcast, biologist and Lyme survivor Dr. Shelley Ball and I discussed neurological and cognitive issues that are common with persistent Lyme disease.

There’s a chapter on neurological issues in my book Love, Hope, Lyme: What Family Members, Partners, and Friends Who Love a Chronic Lyme Survivor Need to Know. I wrote the book to understand what someone in my life with persistent Lyme was going through. Since the neurological issues concerning Lyme are so personal and potentially extreme, the chapter is intentionally light.

Shelley lives in Westport, Ontario, Canada, an area endemic for Lyme, Anaplasma and Babesia. A biologist by trade, she spent a lot of time outdoors doing field work around the world. In addition to Lyme and Bartonella, she also has Babesia odocoilei, which has been shown to be treatment resistant and contributes to “brain on fire” symptoms as well.

After she was diagnosed with Lyme, she dove into researching the disease to understand what was happening to her. She wrote her book Lyme Disease, Ticks and You: A Guide to Navigating Tick Bites, Lyme Disease and Other Tick-Borne Infections to make what she learned more accessible and less complex to the typical Lyme survivor.

Neurological and Cognitive Symptoms

“Neurological symptoms are very challenging,” she said. “I went for several months where I could barely read, which is hard when you must keep working. The brain issues were the biggest for me such as short-term memory loss. When I was in the thick of treatment, I’d be standing in front of somebody I’d known for years, and I couldn’t remember their name.”

She continued, “Executive functions such as just being able to pay your bills, plan your work, stay on schedule, is challenging. It forces you to try to find aids and little tricks and things that you can do to support yourself. They’re essentially like pre-dementia symptoms. Psychiatric issues, which are a huge part of this, can often lead to personality changes.”

She explained that these infections can cross the blood-brain barrier and cause massive inflammation, so you can end up with a permanently inflamed brain.

“We’re essentially suffering from a brain autoimmune issue where your own immune system essentially is attacking your own brain. It’s especially challenging because there are few good treatments for autoimmune conditions. Usually, it’s steroids and similar things. Those are some of the worst things that you can take if you’ve got chronic tick-borne infections.

“You feel this rage rise in you, and you have no control over it. Your brain is inflamed. This is not something that you’re doing. It is happening to you. You literally must find a way to almost step away and manage it when these things flare out.

“Your personality changes,” she continued, “Not only do the people around you see it, but you see it in yourself. You go through a grief period where you grieve for the person that you were, both mentally and in your personality, but also physically, because you’re just not capable of doing the activities that you used to do. These are very tough issues to deal with and sometimes it drives people away.”

Challenges to Treating Neurological Symptoms

Most chronic Lyme survivors struggle with pain, but the neurological issues can be the most challenging.

Shelley said, “There are so many aspects to it. There’s the direct impact on brain tissue, there’s the inflammation, there’s the autoimmunity and the immune component of it. You’re trying to deal with all these things. One of the keys is to try to get that inflammation down.”

“I’ve had some fascinating conversations with other Lyme patients about treatment, because we’ll often have flare-ups, and a lot of people will turn back to antibiotics to manage those flare-ups. They think that maybe those insistent Lyme bacteria have flared up and turned back into spirochetes and we’re back into an active infection.”

Shelley said, “There are other challenges to treatment. One is the isolation of the disease. Lyme patients especially experience this because we are gaslighted by the medical system that we reach out to, to try to regain our health. There is some initial empathy, compassion, and support, but that dwindles. Then you realize that you are very much on your own suffering in silence.”

She said that if you read the science, when the body becomes inflamed, that inflammation overstimulates your brain and puts you into permanent fight or flight mode. This is known as sympathetic dominance or sympathetic overdrive. Interestingly, it stimulates more inflammation. Then you get stuck in this positive feedback loop of inflammation. What it comes down to is trying to break that cycle of inflammation.

On the podcast, she discusses botanicals and neuro-retraining techniques that might be helpful.

Final Thoughts

I asked for her recommendations for how to live a higher quality life while still dealing with Lyme.

“Try to find ways to find joy. Lyme patients do a lot of grieving. We’ve lost our physical capabilities; we’ve lost our cognitive abilities. We’ve lost our old personality. Sometimes we lose people in our life who just can’t stay there to support us. I don’t believe in toxic positivity, but gratitude is important to focus on what we do have.”

She offered, “I empathize because this really is a shared disease in the sense that even if our loved ones don’t understand what we’re going through, it impacts them. Stay the course. It’s hellish, to be honest. It’s also an iceberg effect where you will probably only see the tip of the suffering that people are going through with these diseases.”

Click here to listen to all episodes of the Love, Hope, Lyme Podcast or on YouTube.

Fred Diamond is based in Fairfax, Virginia and can be contacted via Facebook. His book Love, Hope, Lyme: What Family Members, Partners, and Friends Who Love a Chronic Lyme Survivor Need to Know is available on Amazon. The e-version of the book is always free to Lyme survivors. Send Fred a private message on Facebook for your copy.

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**Comment**

Great information.

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Category:

Activism, Lyme, Psychological Aspects, Treatment

Brain on Fire: Neuropsychiatric Disorders in Children

https://www.lymedisease.org/alain-mass-brain-on-fire/

Brain on fire: neuropsychiatric disorders in children

By Alain Mass, MD

2/13/24

Nearly one in six children between the ages of 2 and 6 years old (17.4%) has a diagnosed mental, behavioral or developmental disorder.

More than 17 million children in the United States have or have had a diagnosable mental illness.

Mental disorders are either primary or secondary. Primary mental illnesses are rather treatable than curable and the treatment is most of the time lifelong.  If you ignore that behind the well-made diagnosis, there may be a deeper reason for the symptoms, you accept the fate of what a primary mental health disorder is about.

The expression “brain on fire” means that the child has only a brain inflammation as opposed to having a true psychiatric disorder, where the psychiatric disorder is only a symptom and not the disease.

The causes of neuroinflammation are numerous and often combined with each other. Many extra-psychiatric conditions may cause psychiatric disorders. The most common ones are infections, auto-immune encephalitis, toxicity including but not limited to mold, heavy metals, or pesticides.  Metabolic or nutritional factors may also contribute to mental disorders.

Lyme disease and neuropsychiatric disorders in children

Children develop more central nervous system symptoms while adults develop more symptoms from the peripheral nervous system.

The most common manifestations of Lyme disease in children are emotional, cognitive and behavioral. The change of personality is definitely the number one symptom of Lyme disease in children.

Lyme disease may be responsible, according to Robert Bransfield, M.D, psychiatrist, for a wide spectrum of neuropsychiatric symptoms. These may include: developmental disorders, autism spectrum disorders, schizoaffective disorders, bipolar disorder, depression, anxiety disorders (panic disorder, social anxiety disorder, generalized anxiety disorder, OCD), intrusive thoughts, eating disorders, sleep disorders, addiction, cognitive impairment, brain fog, seizure disorders, suicide, violence, social withdrawal, depersonalization, dissociative episodes, and derealization. 20-25% of autistic children in the US have been shown to have Lyme disease.

Children may have difficulty with attention and concentration, speed and efficacy of processing information, learning and memory, auditory processing and language expression. Sleep disorder is common or return to bedwetting or loss of daytime bladder control.

Teenagers may have mood swings, depression, suicidal thoughts, personality changes, sleep problems, poor concentration, cognitive disorder, a loss of interest in school and school activities and interest in family values.

Most children who present with cognitive or psychiatric disorders do not remember a tick bite. They are already in the late phase of the disease. The initial phase may be missing.

The symptoms and severity of symptoms can vary from day to day. A child may feel well enough to go to school one day, but not the next. A psychiatric disorder may be the only symptom. Brian Fallon, M.D, Director of the Lyme and Tick-Borne Diseases Research Center at Columbia University, writes, “Psychiatrists who work in endemic areas need to include Lyme disease in the differential diagnosis of any atypical psychiatric disorder.”

Basal ganglia autoimmune encephalitis (PANDAS/PANS)

Auto-immune encephalitis is characterized by an abrupt onset, often from one day to the next and by the correlation in time between the evidence of an infection and a sudden and acute new onset of a neuropsychiatric disorder.

PANDAS refers to encephalitis due to streptococcal infections, whereas PANS to other infections. The diagnostic criteria of PANDAS/ PANS are to have an abrupt, dramatic onset or recurrence of OCD, acute onset of anorexia and/or severe restrictive eating disorders with at least two of the following symptoms.

  • Anxiety, including new onset of separation anxiety, or hyper-alertness.
  • Behavioral regression (baby talk, tantrums),
  • Emotional lability including suicidal depression, hallucination,
  • Irritability, aggression, raging, severe oppositional behaviors.
  • Hypersensitivity to light, noise, or touch. The child may not tolerate his/her clothing
  • Tics, involuntary movements.
  • Handwriting change
  • Deterioration in school performance and cognitive changes, (difficulty focusing)
  • Sleep disturbances (difficulty falling asleep, night terrors, refusal to sleep alone)
  • Urinary frequency or urgency, new onset of bedwetting

Toxicity

Heavy metals (such as mercury and lead), mycotoxins released by mold, and other environmental toxicants are neurotoxic and may also be responsible for neuropsychiatric disorders.

Post COVID 

Anxiety and depression may be common six months after COVID-19 recovery.

Nutritional and metabolic factors

Glutamate, GABA, histamine, oxalate, copper, zinc, selenium, vitamin Bs in excessive or insufficient amounts, the inability to process folic acid as seen in those who have MTHFR mutations,  have also been associated with mental disorders.

Gut inflammation

The gut-brain axis (GBA) consists of bidirectional communication between the central and the enteric nervous system, linking emotional and cognitive centers of the brain with peripheral intestinal functions. Gut inflammation can cause cognitive and mental health disorders, too.

Conclusion

Wondering whether a mental disorder is either primary or secondary, even when the disorder is well categorized as well known mental disease is the only way to give a chance to convert a lifelong, treatable but not curable, mental illness into a curable disease, to relieve from the social and medical burden of a psychiatric illness.

Dr. Alain Mass is board-certified in family medicine, with a practice in Suffern, New York. He is a member of the International Lyme and Associated Diseases Society (ILADS), the International Society of Environmentally Acquired Illnesses (ISEAI), and the PANDAS Physician Network (PPN). His website is massfunctionalmd.com.

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Category:

Autism, Gut Health, Inflammation, Lyme, PANS, Psychological Aspects

Mom of 4 Kids With Lyme Offers Encouragement to Other Parents

https://www.lymedisease.org/ultraparenting-book/

Mom of 4 kids with Lyme offers encouragement to other parents

By Anna Brennan

I had already given birth four times before I found out that I had chronic Lyme. Looking back, I think my children’s diagnoses were inevitable.

Just like the other children in our neighborhood, my kids sat in piles of leaves in the fall. They played in tall grass in the spring. We lived in a quiet cul-de-sac by the woods and, naively, my husband and I were flattered when rabbits and deer chose our yard to graze in.

At very young ages, my children struggled with a range of symptoms from food allergies to OCD to recurring fevers and more. They also developed behavioral issues that made them extra difficult to parent. Their idiosyncratic symptoms got worse as they grew, which led me to seek the help of a physician who specialized in autism spectrum disorders. Fortunately, he happened to be a Lyme literate doctor, too. “Let’s test for Lyme,” he said. What’s that? I thought to myself as he handed me a pamphlet on ticks.

The daunting, winding road

I soon found out how daunting and winding the road to recovery from tick-borne illnesses can be.

Veteran parents and well-meaning friends told me not to worry about my kids. They said, “They’ll be just fine” if I “let them grow out of it.” The guidance I actually needed didn’t come from them or from traditional parenting books. And I hadn’t yet met other families who had Lyme.

On the contrary, motivational speakers and high achievers I didn’t know personally became my role models. I read their books, listened to their interviews, and incorporated their wisdom in my parenting in order to be in constant contact with hope. Their push to Set big goals! and Never give up! had relevancy in my home.

Using these people’s advice, I was tough on myself. I even assigned myself ratings as I parented. If I was impatient when my toddler had an hour-long meltdown, I would dock my grade. When I handled my five-year-old’s aggressive behavior calmly, I would mentally reward myself with a high mark. Reaching for high personal standards helped me get through the grueling days and nights as I cared for my sick kids.

We’ve all heard of the airplane analogy where passengers are advised to put on their own oxygen mask before helping their child. However, I learned that I had to take care of myself simultaneously as I was helping my kids.

What this looked like for me was ditching junk food that I had been using to dull my emotional stress. I traded soda for water and ate nourishing foods so that I could be alert when I had to wake up during the night.

Having time to exercise was a challenge but I found out the hard way that if I didn’t consider my own health along with my children’s, I would not be able to keep up with their schedule. I would put a set number of rubber bands on my wrist in the morning, each one representing a mobility drill or strength exercise that I had to sneak into my day. By the evening, I intended to have no more reminders left on my arm.

The “invisible attorney”

I reached my goals by thinking creatively. Just as an elite athlete uses analogies to better performance, I did, too, as I parented. I would pretend that an invisible attorney was standing beside my children, ready to catch me on details I did wrong.

One time, for example, when my daughter had a stomachache, she quietly walked upstairs and ripped an entire jumbo package of paper towels off their rolls. When I found her in the white, wispy mess, I wanted to shout at her, “What do you think you’re doing?! Clean it up, now!” However, I imagined the attorney watching me and taking notes. I had to think carefully before addressing her without losing my temper.

One technique I also relied on was when I passed by the bathroom mirror on my way to the hallway, and I would stop for a moment to look at myself. “You can do this,” the reflection would say aloud to me. Or, “You didn’t handle that well. Try to do better.”

Just seeing my face was comforting because I knew the person in the mirror had my best interest in mind. “I see you…It’s OK…You are strong…Keep going,” I would remind myself, often offering a nod and a thumbs-up for added assurance. This tactic, along with many others, helped me treat my children respectfully when they were most difficult to care for.

I viewed myself as a leader in my household. I managed everything related to my kids’ health protocols, from special diets and therapies to homeschool and the general morale of my family. Despite how hard I worked, I still got blamed by other adults when my kids were unwell. In fact, I was bombarded with negativity from those around me who knew nothing about Lyme disease. No one outside of my home and our doctor’s office acknowledged their medical symptoms.

Proving to outsiders shouldn’t be your goal

After years of experience, I now can say that trying to prove to others that I was doing my best is irrelevant. My advice to caregivers who are new to the battles of Lyme would be this: remember that your reputation is not what you’re fighting for. Convincing others takes emotional effort and time that would be better spent on helping your loved ones.

Additionally, I would say that everyone learns on his/her own timeline. We all know some impressive leaders in the Lyme community who were once nonbelievers. You, and everyone else that those people have come across in life, contributed to their transformation.

My children have made significant progress over the years. They aren’t recognizable as the once medically fragile people they used to be. Because of their years of struggling, they don’t take their health for granted.

I believe that I was gifted the children I had. As a family, we discovered through trial and error how to be grateful, educated, and resilient. My role now is to help other families in the Lyme community.

Anna Brennan has written a book to help other parents who have children with health issues. “Ultraparent Thinking” can be found at ultraparentthinking.com.

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A true heroine in my book.

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Category:

Activism, Lyme, Psychological Aspects

Big Pharma: Influences Diagnoses & Treatments & More Than Half of CDC Employees End Up Working For It

https://thevaccinereaction.org/2024/01/pharma-influences-diagnoses-and-treatments-in-bible-of-psychiatric-disorders/

Pharma Influences Diagnoses and Treatments in “Bible” of Psychiatric Disorders

by Barbara Cáceres

Published January 16, 2024

Article Excerpts:

A new study published in the British Medical Journal (BMJ) found that 55 of the 92 American doctors who determine what diagnoses and treatments are included in the American Psychiatric Association’s (APA) most recent edition of their Diagnostic and Statistical Manual (DSM) collectively received more than $14 million in previously undisclosed industry funding.1

The APA’s manual is often referred to as the “bible” of psychiatric disorders because of its enormous influence on clinical practice, affecting such disparate domains as jurisprudence and insurance claims. The APA also produces and disseminates clinical-practice guidelines directly tied to DSM diagnoses.2  The DSM’s fifth edition, the DSM-V, was published in May 2013; a text revision was published in March 2022 as the DSM-5-TR.

Transparency is Not the Answer

After the 1994 release of DSM-4, the APA instituted a policy requiring expert advisors to disclose drug industry ties. But the move toward transparency did little to cut down on conflicts of interest, with nearly 70 percent of DSM-5 task force members reporting financial relationships with pharmaceutical companies—up from 57 percent for DSM-4.7

(See link for article)

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A few points:

  • The study used info only from Open Payments which doesn’t include payments to doctors based outside the U.S. so the problem is worse.
  • Panel members with Pharma ties have introduced new diagnoses and revisions to treatment which have lacked scientific evidence but helps industry.
  • In 2019, 1 in 6 Americans over age 18 took medication for a psychiatric disorder.
  • The Institute of Medicine (IOM) is recommending that only independent experts without commercial ties be involved in clinical guideline decision-making.
One would hope this last point would be common practice, but alas, it isn’t.
As always, “Follow the money.”

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https://thevaccinereaction.org/2024/01/more-than-half-of-cdc-employees-end-up-working-for-pharma/

More Than Half of CDC Employees End Up Working for Pharma

by TVR Staff

Published January 14, 2024

Article Excerpts:

A study conducted by researchers at the University of Southern California (USC) and Harvard University and published in the journal Health Affairs found that 54 percent of the staff members, who were employed at the U.S. Centers for Disease Control and Prevention (CDC) and left the federal health agency during 2004-2020, went on to work for the pharmaceutical industry.1 2 3

According to the study:

Exiting staff went to not only biopharmaceutical and device manufacturers, but also health insurers, information and communication technology firms, real estate firms with medical property portfolios, and consulting firms.1

Current Laws and Regulations Have Little Impact on CDC/Pharma Conflicts of Interest

Current federal laws and regulations, which were supposed to reduce conflicts of interest that arise from the revolving door between the CDC employees and pharma, do not appear to adequately address the “pre- and post-departure risks.” Study authors Kanter and Carpenter cited 18 U.S. Code Section 207, which imposes a one- to two-year “cooling-off period” on former officials within the executive branch of the federal government and prohibits them from lobbying the government on behalf of private organizations.1 3

Kanter said that the cooling off period laws “do not cover much lobbying related to federal agency decision making, like regulations and drug authorizations, so they don’t necessarily deter that behavior.”3

Revolving Door Between CDC and Pharma a Serious Problem

The “sheer scale” of the revolving door between the CDC and other DHHS agencies, such as the U.S. Food and Drug Administration (FDA), is apparently serious enough that Kanter and Carpenter described it as a “troubling” and one that “merits further scrutiny.”1

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**Comment**

Speaking of treatment “guidelines” and sordid history, investigative journalist Kris Newby uncovered the fact that a majority of those determining the Lyme treatment guidelines also had financial conflicts of interest with Big Pharma.

It’s important to note that these guidelines have remained frozen in time for over 40 years despite new science and reality.  This of course means the controversy continues making doctors too frightened to treat patients and depart from the accepted narrative.

Category:

Activism, Psychological Aspects, research

Medical Gaslighting and Lyme Disease: The Patient Experience

healthcare-12-00078

Medical Gaslighting and Lyme Disease: The Patient Experience

Jennifer L. Fagen 1, *, Jeremy A. Shelton 2 and Jenna Luché-Thayer 3

Abstract:

Even though there are approximately half a million new cases of Lyme disease in the US annually, according to the CDC, it is often undiagnosed or misdiagnosed, which can result in a chronic, multisystemic condition. Lyme disease is a recognized public health threat and is a designated “notifiable disease”. As such, Lyme disease is mandated to be reported by the CDC. Despite this, both acute and chronic Lyme disease (CLD) have been relegated to the category of “contested illnesses”, which can lead to medical gaslighting. By analyzing results from an online survey of respondents with Lyme disease (n = 986), we elucidate the lived experiences of people who have been pushed to the margins of the medical system by having their symptoms attributed to mental illness, anxiety, stress, and aging. Further, respondents have had their blood tests and erythema migrans (EM) rashes discounted and were told that CLD simply does not exist. As a result, a series of fruitless consultations often result in the delay of a correct diagnosis, which has deleterious consequences. This is the first study that addresses an extensive range of gaslighting techniques experienced by this patient population.

(See top link for entire paper)

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Category:

Activism, Lyme, Psychological Aspects, research, Uncategorized