Archive for the ‘Psychological Aspects’ Category

Lyme & Depression – A Personal Story

https://www.axiomllc.com/blog/lyme-disease-and-depression

Lyme Disease and Depression – A Personal Story

by | Jul 13, 2022

Studies show that the incidence of Lyme disease in the USA has nearly doubled since 1991. While the disease is associated with many physical symptoms, there is a correlation between Lyme disease and depression. In fact, Lyme can have a significant psychological affect as much as physical ones on infected individuals. Axiom Medical’s Communication Director, Autumn Brennan, had a rough experience with Lyme. In this blog, we share her heart-felt story as well as tips and tricks to manage Lyme’s physical and mental challenges.

Lyme Disease and Depression – Autumn’s Story

It was a gorgeous fall day in Southwest Wisconsin, warm and sunny with a gentle breeze. I packed up my daughters and headed to a local organic apple orchard, where we had harvested apples every year for over a decade.  (See link for article)

____________________

Great excerpt:

There is no magical one-size-fits-all cure for chronic pain, mental health challenges, or substance use. But there is pure magic in our human connection. If you see someone struggling:

  • approach them kindly with your care, concerns, and a listening ear
  • if they are open to support, offer professional resources for assistance
  • schedule regular time to check in on their progress and catch up on hugs

For more:

Category:

Activism, Lyme, Psychological Aspects

Quebec Coroner Calls For Inquiry Into Suicide of Woman With Lyme Disease

https://www.lymedisease.org/quebec-coroner-calls-for-inquiry/

“Hijacked by Lyme”: Quebec coroner calls for inquiry into suicide

The death by suicide of a young woman battling Lyme disease garnered international attention recently after her father—a prominent Canadian businessman—shared the news on LinkedIn.

Alain Champagne — the CEO and president of the Jean Coutu Group, a chain of Quebec pharmacies—posted the following:

“It is with the heaviest of hearts (and still in shock) that I share the tragic news that our sweetheart Amelie (22) took her own life this past Sunday…We were witnesses as to how challenging life had become for her in dealing with the evolving Lyme disease symptoms (after years of medical errance and finally getting a positive test in the US this past June, over time and despite the recent treatments, the disease had evolved way beyond the numerous physical symptoms and was now severely impacting her brain). Over time, Lyme essentially highjacked her.”

Now, CBC News reports that Quebec’s chief coroner has ordered a public inquiry into Amelie’s death.

Champagne told an interviewer that his daughter had suffered from significant sleep disorders and auditory hallucinations. He said her personality had changed in the weeks leading up to her death.

After a suicide attempt at the family’s cottage, Champagne said his daughter was taken to the Hôtel-Dieu, a teaching hospital in Quebec City. However, Champagne said hospital staff told him his daughter’s situation had stabilized and she did not represent a danger to herself.

Amelie was released without treatment and took her own life shortly thereafter.

Quebec’s outgoing junior health and social services minister, Lionel Carmant, said in an interview that this situation was unacceptable.

“That’s why we’ve called for a coroner’s inquiry, to see what practices caused this, where the system failed, and what needs changing. And we will change it,” he said.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, Board President of LymeDisease.org. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.

__________________

**Comment**

The story, while tragic beyond words, is one of many others in a similar situation.  But, it’s going to take a miracle for this mountain to move.  I’m not saying we shouldn’t try – it’s all I do on a daily basis- but the corruption regarding Lyme/MSIDS is so deep and so vast that it is truly going to take a miracle.  If working with the very organizations that are behind this debacle yields any positive change I will eat my hat.  I personally believe we are going to have to do our own work – including the science – to prove what we already know clinically.

Lyme/MSIDS is relapsing in nature and often causes chronic illness.
Those who follow the one microbe, one drug theory need not apply.

For more:

Category:

Activism, Lyme, Psychological Aspects

Support: The Most Helpful Thing in My Lyme Journey

https://www.globallymealliance.org/blog/the-most-helpful-thing-in-my-lyme-journey

The Most Helpful Thing in My Lyme Journey

by Jennifer Crystal on June 14, 2022

<span id="hs_cos_wrapper_name" class="hs_cos_wrapper hs_cos_wrapper_meta_field hs_cos_wrapper_type_text" style="" data-hs-cos-general-type="meta_field" data-hs-cos-type="text" >The Most Helpful Thing in My Lyme Journey</span>
The article discusses the one thing that has helped me most in my Lyme journey.

Lyme warriors write to me every day to ask what helped me get better. Many of them have been suffering from persistent symptoms for months or years. They find inspiration reading about how well I’m doing, and hope I can give them the magic answer. Most ask, “What medication did you take?” I wish there was a magic answer I could give, but the fact is, no two cases of tick-borne illness are alike. What worked for me might not work for others, and my own protocol has changed many, many times over more than 15 years of treatment.

Because it doesn’t help to give out my ever-changing protocol, I have written about various other therapies and lifestyle changes that have worked in conjunction with medication to get my tick-borne illnesses into remission and keep them there. These include adjunct therapies like integrative manual therapy and neurofeedback, talk therapy, and an anti-inflammatory diet. I’ve learned to pace myself physically and cognitively, have set boundaries around my needs, and have reframed my thinking about living with a chronic illness. My wellness is a result of a complex interplay of many factors, changes, and techniques. I can’t point to any one of them as more helpful than another.

Support

Gala PR Image (15)But if I had to name the one thing that has been the most helpful in my Lyme journey, it would be support. Imagine what happens when someone you know is diagnosed with cancer. That person will suffer physically and emotionally, but they will not do it alone. Friends and family will start websites, fundraisers, and meal trains. They’ll drive the patient to appointments, sit with them afterwards, do their dishes, help with their kids, water their plants. They’ll send cards and flowers, and call often to check in. They will never say to the patient, “Aren’t you over that yet?” or, “Maybe you don’t really have cancer. Maybe it’s just all in your head.” The patient will be enveloped in support that will allow them to focus solely on getting well.

If that same person had Lyme disease instead of cancer, the response might be very different. Some Lyme warriors have excellent support networks, but too many are misunderstood by family, friends, and doctors alike. Not only do these patients have to fight to get well, but they also have to fight to be believed. They spend energy they don’t have trying to convince others of their suffering. They often don’t get the help they need, whether it’s running an errand, appealing an insurance denial, or just having a comfortable shoulder to cry on. Lyme patients need and deserve the same outpouring of support that patients with better-known and less-controversial illnesses count on.

When I first got sick with mono that slipped into chronic Epstein-Barr virus, I struggled to get a diagnosis. Two years later, I was also diagnosed with underlying tick-borne infections. I thought I finally had the magic answer—an infection that could be treated! Little did I know what I was up against. The subsequent years were an uphill battle not just for wellness, but for validation. I had to find the right medical support, and figure out who I could talk to that would stand beside me on the journey. I had to learn to brush off the naysayers and to trust that I knew my body best.

My friends supported me unconditionally, even if they didn’t fully understand my illnesses. They started email support chains for me. They came to visit. They called and sent cards. My family had a harder time understanding tick-borne illnesses, and chronic illness in general, at the beginning. They wondered when I would get well, how much longer it would take, whether I had something else entirely. It wasn’t easy for them to have me under their roof as an adult, and it wasn’t easy for any of us to communicate our feelings and needs. Over time, their Lyme literacy—and their understanding—has improved dramatically. We’ve all come to understand what it means for a family member to live with a chronic illness, which has made all the difference in my healing journey.

When I got COVID-19 in 2020, it didn’t take years for me to get the support and understanding I needed. Even with a (false) negative initial test, no one questioned whether I actually had COVID-19. No one chided me for being lazy. People checked in every day, and the whole world was on pause with me. What a difference that camaraderie made! With COVID-19, I was lonely because I was quarantined, but I never felt alone. With tick-borne illness, I wasn’t lonely because I was around other people, but I often felt alone.

I have learned first-hand that any challenge we face in life is easier with support. If you know someone who has Lyme disease, ask them, “How can I best support you?” Or, ask yourself, “If this friend had cancer or COVID-19, what would I do to support them?” The answer will likely make your friend’s journey a little easier.

Writer

Jennifer Crystal

Opinions expressed by contributors are their own. Jennifer Crystal is a writer and educator in Boston. Her work has appeared in local and national publications including Harvard Health Publishing and The Boston Globe. As a GLA columnist for over six years, her work on GLA.org has received mention in publications such as The New Yorker, weatherchannel.com, CQ Researcher, and ProHealth.com. Jennifer is a patient advocate who has dealt with chronic illness, including Lyme and other tick-borne infections. Her memoir about her medical journey is forthcoming. Contact her via email below.  Email: lymewarriorjennifercrystal@gmail.com

Go here for support groups:

Category:

Activism, Lyme, Psychological Aspects

Can Lyme Disease Trigger A Cascade of Costly, Unnecessary Tests?

https://danielcameronmd.com/can-lyme-disease-trigger-a-cascade-of-costly-unnecessary-tests/

Can Lyme disease trigger a cascade of costly, unnecessary tests?

Lyme disease patient getting a costly tests including an MRI.
In an article published in JAMA Internal Medicine, Dr. Meredith Niess described a case where routine medical tests triggered a cascade of costly, unnecessary care.
By

Dr. Meredith Niess discussed the case in more detail in an NPR story.[1] A man was scheduled for hernia surgery. A preoperative X-ray was ordered despite the paucity of evidence of whether the X-ray was needed. The X-ray suggested a mass. The patient was worried about cancer.

Cancer was ruled out. “In fact, a follow-up CT scan showed a clean lung but picked up another suspicious “something” in the patient’s adrenal gland,” stated Neiss. The second CT scan was negative.

Niess used the case “as an example of what researchers call a “cascade of care” — a seemingly unstoppable series of medical tests or procedures.”

This cascade effect has been described before. “With regard to medical technology, the term refers to a chain of events initiated by an unnecessary test, an unexpected result, or patient or physician anxiety, which results in ill-advised tests or treatments that may cause avoidable adverse effects and/or morbidity,” wrote Deyo.[2]

Deyo cited an example of a cascade effect in his review from the professionals who coined the term.

Mold & Stein offered the story of a patient admitted to the hospital for elective repair of an inguinal hernia.[3] “He had a history of coronary disease with very mild arterial narrowing on a previous cardiac catheterization. Anxious about his cardiac status, the surgeons requested a preoperative cardiology consultation. Perhaps uncertain about his own clinical judgment, the cardiologist suggested obtaining an exercise tolerance test.

This was delayed for six hours while the patient waited outside the test room, during which time he became anxious, agitated, and angry, and had some mild chest discomfort. Because of the chest discomfort, the test was not done and the patient was transferred to a telemetry unit. There he became more anxious and agitated, was found to have some electrocardiogram changes, and received medications.

He underwent another cardiac catheterization, which actually showed slight improvement since his previous test. At that point, the hernia repair could not be performed because of a full operating room schedule, and the primary physician was left to try to reassure the patient that he was in no danger. The procedure had to be delayed for two weeks.

In this example, the chain of events seemed to be fueled by physician anxiety, and it snowballed with the addition of patient anxiety.”

Cascade of tests for Lyme disease patients

In some cases, Lyme disease may go undiagnosed and with its broad array of symptoms and presentations can trigger a cascade of costly, unnecessary tests.

Misdiagnosis and delayed diagnosis have been described in a large Lyme disease database.

“More than half (51%) reported that it took them more than three years to be diagnosed and roughly the same proportion (54%) saw five or more clinicians before diagnosis. These diagnostic delays occurred despite the fact that 45% of participants reported early symptoms of Lyme disease within days to weeks of exposure,” wrote Johnson et al. [4]

Others with recurrent Lyme disease and Lyme encephalopathy have waited an average of 2 years before receiving treatment.[5,6]

These delays can have life-long repercussions. Once the Borrelia burgdorferi (Bb) infection disseminates, symptoms can become more problematic and treatment more difficult.

Related Articles:

What does a Lyme disease flare-up feel like?
Herxheimer reaction in a 13-year-old boy with Lyme disease
Lyme disease causes a mix of symptoms including autonomic dysfunction

References:
  1. When routine medical tests trigger a cascade of costly, unnecessary care. https://www.npr.org/sections/health-shots/2022/06/13/1104141886/cascade-of-care
  2. Deyo RA. Cascade effects of medical technology. Annu Rev Public Health. 2002;23:23-44. doi:10.1146/annurev.publhealth.23.092101.134534
  3. Mold JW, Stein HF. The cascade effect in the clinical care of patients. N Engl J Med. Feb 20 1986;314(8):512-4. doi:10.1056/NEJM198602203140809
  4. Johnson L, Shapiro M, Mankoff J. Removing the Mask of Average Treatment Effects in Chronic Lyme Disease Research Using Big Data and Subgroup Analysis. Healthcare (Basel). Oct 12 2018;6(4)doi:10.3390/healthcare6040124
  5. Fallon BA, Keilp JG, Corbera KM, et al. A randomized, placebo-controlled trial of repeated IV antibiotic therapy for Lyme encephalopathy. Neurology. Mar 25 2008;70(13):992-1003. doi:10.1212/01.WNL.0000284604.61160.2d
  6. Cameron DJ. Consequences of treatment delay in Lyme disease. J Eval Clin Pract. Jun 2007;13(3):470-2. doi:10.1111/j.1365-2753.2006.00734.x

Category:

Lyme, Psychological Aspects, research

22 Year Old Chronic Lyme Patient Commits Suicide

https://www.insider.com/woman-dies-by-suicide-after-long-battle-with-lyme-disease-2022-9

A 22-year-old died by suicide after years-long struggle with chronic Lyme disease, her father says in a heart-wrenching LinkedIn post

Andrea Michelson
Sep 23, 2022, 10:19 AM
Amélie Champagne.
Courtesy of Alain Champagne
  • Amélie Champagne, 22, died by suicide this month after a battle with Lyme disease, her father said.
  • Lyme disease can infiltrate the joints, heart, and nervous system if left untreated.
  • Her father shared the news on LinkedIn.

Amélie Champagne, 22, struggled to find an explanation for her physical pain for years before she was finally diagnosed with Lyme disease in June 2021.

By then, the tick-borne bacteria had already taken a severe toll on her brain. On a Sunday this September — more than a year after her diagnosis — Champagne died by suicide.

Her father Alain, outgoing president of the Canadian drugstore chain Jean Coutu Group, recently shared the news in a poignant LinkedIn post. (See link for article)

___________________

SUMMARY:

  • Like so many, it took years before this woman got diagnosed with Lyme disease.
  • And like so many, this complex disease(s) “hijacked her.”
  • If you or someone you know is experiencing depression or has had thoughts of harming themself or taking their own life, get help. In the US, call or text 988 to reach the Suicide & Crisis Lifeline, which provides 24/7, free, confidential support for people in distress, as well as best practices for professionals and resources to aid in prevention and crisis situations. Help is also available through the Crisis Text Line — just text “HOME” to 741741.
For more:

Category:

Activism, Lyme, Psychological Aspects