Archive for the ‘Lyme’ Category

May Lyme Awareness: Excerpts of 12 Important Books for Lyme Patients & Posters to Download – BOGO Sale on Lyme Documentaries

https://www.lymedisease.org/members/lyme-times/special-issue/lyme-disease-books/  Go Here for Excerpts

In honor of Lyme Disease Awareness Month, the latest issue of the Lyme Times is open-access–freely available to all.
This special issue offers excerpts of 12 important Lyme-related books.
Topics range from personal experience with Lyme and co-infections, to physician advice about different treatments, the history of Lyme disease, how Lyme can affect the brain, and subjects related to Lyme in children.

Download Posters & Brochures for Lyme Disease Awareness Month Activities

https://www.lymedisease.org/lyme-disease-posters/  Posters Here

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https://mailchi.mp/4cc3fef99533/lyme-disease-awareness-month-special  See Trailers here and purchase from within this link

BOGO Sale for Lyme documentaries: Under Our Skin, and Emergence

It’s Lyme Disease Awareness Month

And our big DVD BOGO Blowout Sale!

This year we continue our advocacy and educational efforts to help spread awareness about Lyme disease. The month of May only we’re donating one free DVD for every DVD purchased of UNDER OUR SKIN or its sequel EMERGENCE. Use these free DVDs to help educate friends, family, physicians and policymakers. Buy one get one free; buy two get two free, and so on. We’ll automatically double your order–the tab’s on us. And if you have a great idea to use our DVDs to educate on a large scale, we can donate in bulk–just let us know your idea. Act now–offer ends May 31st!

Top Killer for Chronic Lyme is Suicide

https://themighty.com/2017/09/lyme-disease-suicide/

The Importance of Reaching Out If Lyme Disease Has Left You Feeling Suicidal

By Annie Perkins-Rosenberg

Editor’s note: If you experience suicidal thoughts, the following post could be potentially triggering. You can contact the Crisis Text Line by texting “START” to 741-741.

Article excerpt:

The important message of this article is to help those out there who deal with the psychiatric manifestations, the judgments and the daily struggle of living life with a complex disease like Lyme. It can be heavy some days, and anyone can have dark questioning moments pass through their minds. When those moments do arise, it can be complicated to find someone to trust and to talk to. Quite often, Lyme patients are paying for treatments out of pocket and this does not leave much money left for proper psychiatric help. With the limited time in office visits with our doctors, there is not much time left to talk about how we are feeling emotionally, and our doctors are generally not trained psychiatrists, as much as we wish they were. With Lyme disease being largely unknown, others close to you may judge you and you may feel like there is no one left to talk to. Even if there is, the psychiatric disturbances the disease can cause can make you feel like there is no one out there who can understand you, no one who can listen to you and no one to reach out to, but there is. There always is.

One of the techniques the author used was Googling the suicide prevention hotline so she had a plan if things got dark.  She also removed anything bothersome and overwhelming to her, set boundaries, learned to speak up, and found a small group of people on the same journey as her for comfort.  She also reminded herself that each day she was getting better, that she was healthy and could beat this.  When the dark thoughts came, she sought out help.

All, great advice.

The following abstract by Dr. Bransfield is telling:

LAD contributed to suicidality, and sometimes homicidality, in individuals who were not suicidal before infection. A higher level of risk to self and others is associated with multiple symptoms developing after acquiring LAD, in particular, explosive anger, intrusive images, sudden mood swings, paranoia, dissociative episodes, hallucinations, disinhibition, panic disorder, rapid cycling bipolar, depersonalization, social anxiety disorder, substance abuse, hypervigilance, generalized anxiety disorder, genital–urinary symptoms, chronic pain, anhedonia, depression, low frustration tolerance, and posttraumatic stress disorder. Negative attitudes about LAD from family, friends, doctors, and the health care system may also contribute to suicide risk.

By indirect calculations, it is estimated there are possibly over 1,200 LAD suicides in the US per year.

http://  Approx 1 Min

Robert Bransfield, MD, DLFAPA, private practice, Psychiatry, in Red Bank, New Jersey, discusses direct methods that can be used to acquire statistics related to suicides that are a result of Lyme and associated diseases

For more:

One of the best pieces of advice I got on the journey from another patient was, “don’t get depressed about being depressed.”  In other words, accept the fact there will be dark days with dark thoughts.  Don’t beat up on yourself over this.  Accept it and look forward to tomorrow which will be better.

While the topics regarding Lyme/MSIDS are endless, dealing with pain and insomnia are two issues that can really help with mental health.

For more:

I would be amiss if I didn’t mention detoxing at this point as well as not detoxing properly can also lead to pain:

Lyme Disease Triggers Inflammation in “Hindbrain”

https://danielcameronmd.com/lyme-disease-inflammation-hindbrain/

Lyme disease triggers inflammation in “hindbrain”

lyme-disease-inflammation-brain

A 52-year-old woman was hospitalized with rhombencephalitis (inflammation of the rhombencephalon, also known as the hindbrain). The condition was found to be triggered by an infection with Borrelia burgdorferi, the causative agent of Lyme disease.

In their article, “Neuroborreliosis with involvement of rhombencephalon: A case report,” ¹ Svingen and colleagues describe a unique presentation in which Lyme disease triggered inflammation of the rhombencephalon, a region of the brain also referred to as the hindbrain.

Over an 8-month period, the patient experienced intermittent fevers, dry cough, fatigue, headaches, night sweats, unintentional weight loss of about 15 lbs., double vision, a tremor in the neck, paresthesia and tremor in the extremities, an unsteady gait, and memory loss.

Approximately 4 weeks prior to symptom onset, the woman had been vacationing in a Lyme-endemic region of Norway. However, she did not recall a tick bite or rash.

“An MRI scan demonstrated pathology in rhombencephalon with quite symmetric T2 hyperintensity involving capsula interna bilaterally, extending through mesencephalon to pons,” the authors wrote.

Borrelia burgdorferi-specific IgM and IgG antibodies were identified using Chemiluminescence Immunoassay (CLIA).

An MRI scan revealed inflammation in rhombencephalon (also referred to as the hindbrain) that are extremely rare in patients with Lyme disease, the authors wrote.

The patient was treated successfully for 4 weeks with intravenous ceftriaxone.

“The MRI findings in rhombencephalon had almost disappeared,” according to the authors. Seven months later, a follow-up MRI “was completely normal, and she had further improvement of her symptoms.”

The authors suggest, “Significant improvement of neurological symptoms and resolution of the MRI findings after proper treatment confirmed the diagnosis neuroborreliosis with rhombencephalitis.”

Furthermore, “we recommend that neuroborreliosis should be considered among the differential diagnoses in patients where neurological symptoms and findings suggesting inflammation in the CNS, despite unusual or normal neuroimaging findings.”

Rhombencephalitis can be caused by infections with Listeria monocytogenes as the most common agent followed by Enterovirus 71 and Herpes simplex virus, the authors wrote. However, it is “exceedingly rare” to find Borrelia burgdorferi as an infectious cause of rhombencephalitis.
References:
  1. Svingen H, Orrem J, Nørgaard Eskesen A. Neuroborreliosis with involvement of rhombencephalon: A case report. IDCases. 2022;28:e01472. Published 2022 Mar 8. doi:10.1016/j.idcr.2022.e01472

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**Comment**

Please remember everything is considered “rare” regarding Lyme, even though many may have the symptoms.  They are rarely recorded.  Big difference.

For more:

Disorientation & Lyme

https://www.globallymealliance.org/blog/where-am-i-disorientation-and-lyme-disease

Do you know what it’s like to have Lyme disease and suffer from disorientation? It can result in confusion or forgetfulness.

The other night while making dinner, I thought of something I needed to add to my to-do list. I walked a few feet into my home office, got to the center of the room, and stopped in my tracks. “What am I doing here?” I said aloud, looking around in confusion.

It’s a feeling many of you have probably experienced: walking into a room to get something and forgetting what you came for; or being in the middle of one task, starting another, and forgetting the first (luckily, I did not leave dinner burning on the stove). Sometimes we can chalk these moments up to the forgetfulness that comes with aging. Sometimes we’re just tired at the end of a busy day. In some cases, these incidents may be early indications of serious conditions like dementia.

And for many, forgetfulness and confusion, particularly as they relate to disorientation, are due to Lyme disease. In their book Conquering Lyme Disease: Science Bridges the Great Divide, Brian A. Fallon, MD and Jennifer Sotsky, MD note that the most typical cognitive effects of Lyme disease are “short-term memory problems (especially working memory), word-finding problems, dyslexic changes, executive problems (difficulties with planning and organization, difficulties with multitasking), and mental slowing.” For some patients, these effects can lead to “spatial disorientation such that familiar routes become suddenly difficult to navigate or appear unfamiliar.”[1]

Luckily for me, even at my lowest points of illness, I never got so disoriented that I didn’t actually know where I was. In those days it might take hours to remember why I walked into a room—I might wake up in the middle of the night and jot down that all-important item on my to-do list—but now, years into remission, I usually remember my task within a few minutes. Drs. Fallon and Sotsky write, “Such errors are readily recognized soon after the fact, but may be sources of alarm or perplexity to the patient and to his or her family.”[i]

For some Lyme patients, alarm bells indeed ring, because the disorientation becomes severe. They may suddenly get lost driving home from work, or go for a walk and not recognize their own neighborhood. They may have to call a family member or neighbor for help. Some stop driving altogether, or won’t go places without company. Disorientation can leave Lyme patients feeling frustrated, angry, confused, and ashamed. It can be yet another blow to their independence.

The good news is that with adequate treatment, disorientation usually gets better or goes away. Neurological symptoms of Lyme disease occur when the Lyme disease bacteria (spirochetes) cross the blood-brain barrier and enter the central nervous system. The infection causes inflammation in the brain, which can manifest in a host of neurological and psychiatric symptoms. Once the infection gets treated, symptoms often subside (though due to Jarisch-Herxheimer reactions, they may get worse before they get better). In other words, though you may literally get lost, with the help of a good Lyme Literate Medical Doctor (LLMD) you can  eventually find your way.

Sources

[1] Fallon, Brian A., MD and Sotsky, Jennifer, MD. Conquering Lyme Disease: Science Bridges the Great Divide. New York: Columbia University Press, 2018 (314-15).

[i] Fallon, Brian A., MD and Sotsky, Jennifer, MD. Conquering Lyme Disease: Science Bridges the Great Divide. New York: Columbia University Press, 2018 (314-15).

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

Tulane Researcher Asks, “Could Chronic Lyme Contribute to Alzheimer’s Dementia?”

https://www.lymedisease.org/embers-lyme-alzheimers-dementia/

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Focus – Opinions and Features
LymeDisease.org
15 APR 2022

Tulane researcher asks, “Could chronic Lyme contribute to Alzheimer’s dementia?”

By Kris Newby, Invisible International

In 2019, the late-great-science-writer Sharon Begley wrote an insightful article, “The maddening saga of how an Alzheimer’s ‘cabal’ thwarted progress toward a cure for decades.”

Begley’s reporting described how a powerful group of researchers became fixated on one theory of Alzheimer’s causation at the expense of all others.

Their hypothesis: that Alzheimer’s cognitive decline was caused by neuron-killing, beta-amyloid protein clumps in the brain, and that if you dissolved the clumps, the disease process would stop.

As this theory hit a brick wall, Begley showed how the actions of the cabal harmed patients: “…for decades, believers in the dominant hypothesis suppressed research on alternative ideas: They influenced what studies got published in top journals, which scientists got funded, who got tenure, and who got speaking slots at reputation-buffing scientific conferences.”

Decades later, with no cure or effective drugs for Alzheimer’s dementia, some researchers are gathering evidence on a different causation theory — that dementia could be triggered by any number of chronic infectious diseases, and that amyloid plaques are a byproduct of an active infection, not the cause.

One of these researchers is Monica Embers, PhD, an associate professor of microbiology and immunology at the Tulane National Primate Research Center. She’s also the leading expert in identifying treatments that can eradicate Lyme bacteria infections in nonhuman primates, our closest mammalian relatives.

CME course on infection and dementia

In her new continuing medical education course, “Chronic Infection and the Etiology of Dementia,” she lays out the evidence that the Lyme bacteria could be one possible cause of dementia.

Her theory is this: When pathogens like the Lyme bacteria sneak past the blood-brain barrier, the immune system doesn’t allow protective killer cells from the entering the inflexible brain cavity, because resulting brain inflammation and swelling could lead to death.

Instead, it encapsulates invading microbes with protein clumps, called beta-amyloid plaques or Lewy bodies, to stop the infection. As a person ages, the bodily processes that clean up this “brain gunk” slows, resulting in protein accumulation that impedes brain signaling and kills neurons.

In her 31-minute course, Dr. Embers describes the clinical symptoms of Alzheimer’s and Lewy body dementia, the impact on public health, genetic risks, and the list of infections associated with dementia-like symptoms.

The course also reviews a well-documented case study about a 54-year-old woman who was treated for the Lyme bacteria (Borrelia burgdorferi), developed dementia, then died 15 years after the initial infection. After death, B. burgdorferi was identified by PCR (DNA detection) in her brain and central nervous system (CNS) tissues, and by immunofluorescent staining of the bacteria in the spinal cord. (For more, read this peer-reviewed study.)

Dr. Embers and her study’s co-authors conclude, “These studies offer proof of the principle that persistent infection with the Lyme disease spirochete may have lingering consequences on the CNS. Published in postmortem brain autopsy images and extensive pathology tests are a compelling reason to pursue this line of scientific inquiry.”

You can watch this free CME course here.

Kris Newby is Communications Director of Invisible International, a 501(c)(3) nonprofit foundation dedicated to reducing suffering from invisible illnesses. The organization offers 24 free, online Continuing Medical Education (CME) courses on the diagnostics, epidemiology, immunology, symptoms, and treatment of Lyme disease, bartonellosis, and other vector-borne infections. 

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