Archive for the ‘Lyme’ Category

When Parents are Unjustly Accused of Harming Their Sick Child

https://www.lymedisease.org/parents-unjustly-accused/

TOUCHED BY LYME: When parents are unjustly accused of harming their sick child

If your child has chronic Lyme disease, PANS/PANDAS, mast cell activation syndrome, POTS, or any number of other “medically complex conditions” – you have probably experienced being disbelieved by many people.

You may be a decent, well-intentioned parent doing everything you can to figure out your child’s puzzling medical problems.

You may scour the internet to learn more about the child’s condition, track the ups and downs of his or her symptoms, and carry binders full of medical records to appointments with various specialists—many of them far from your home.

But, in a cruelly ironic twist, those very activities can get you in trouble.

Physicians who have little experience with your child’s medically complex condition may feel you are “overmedicalizing” your child.

School officials may think you’re intentionally keeping your child out of class for reasons they consider invalid.

Neighbors and even family members may believe you’re exaggerating your child’s health problems—and, in their opinion, going about things the wrong way.

And, unfortunately, any one of these people might report you to Child Protection Services. And then your problems will escalate dramatically.

Now, it goes without saying that sometimes children ARE abused by parents, and there is, of course, a legitimate role for CPS investigations.

But medically complex conditions are fraught with issues that can unfairly entangle parents—and the more they fight to free themselves, the more tied up in legal knots they may become.

For an idea of how bad things can get, consider what happened to then-teenager Justina Pelletier and her family. In 2013, her parents lost custody of their daughter after Boston Children’s Hospital disagreed with how she was being treated at a different medical center. (Read more about Justina’s situation here.)

What to do?

Beth Alison Maloney, Attorney/Author

According to Beth Alison Maloney, there are things you can do now to minimize the possibility of running afoul of CPS in the future. And, if you’re already caught up in the system, there are things you can do to get out of it.

Her thorough and well-researched advice on this subject is laid out in a new book called Protecting Your Child from the Child Protection System.

Maloney is an attorney and the mother of a child who suffered from the strep-caused autoimmune condition known as PANDAS—back before practically anybody even knew what that was.

Theirs was a complicated journey. But her son finally got better and now is a well-functioning adult. She wrote their family’s story in her 2009 book, Saving Sammy: Curing the Boy Who Caught OCD.

In 2013, she wrote another instructive book, called Childhood Interrupted: The Complete Guide to PANDAS and PANS. It primarily focuses on the medical information you need to help your child recover from these conditions.

Over the past two decades, Maloney has worked as a lawyer, guardian ad litem, and nationwide consultant in the field of child protection laws. She has seen firsthand how innocent families are sometimes presumed guilty of all manner of abuse. She has seen the rise of “child abuse pediatricians”–specialists that she believes sometimes jump to unwarranted conclusions, to the detriment of the families involved.

She wrote this book so parents of sick children can understand what they are potentially up against and how they can help themselves. As she states in the introduction, “Too much is at stake for you to plunge in without being informed.”

(Please go to top link for an excerpt from the book)

Maloney’s book is divided into six parts:

  1. An overview of the Child Protection System and how it functions.
  2. How to navigate the maze and what to do if you find yourself accused
  3. The special challenges facing parents of medically complex children
  4. Building a team—lawyer, family, friends
  5. A deeper dive into the court system
  6. Rebuilding your lives after being falsely accused of abusing your child.

No parent wants to think about the possibility of losing custody of their child–especially when that child is seriously ill. But parents of medically complex children should familiarize themselves with the issues involved and take steps to head off trouble.

Knowledge is power. And if you’re falsely accused of abusing your child, you need all the power you can get.

For more information, see Beth Alison Maloney’s website.

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

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**Comment**

Very important information within this article, and book.  I highly advise any parent, grandparent, or concerned person who knows of a family struggling with Lyme to get this book to be educated. This is a wonderful resource and would make an excellent gift as well.

For more:

Category:

Activism, Lyme, Mast Cell Activation Syndrome (MCAS), PANS, Uncategorized

Can Lyme Disease Cause Cognitive Dysfunction or Dementia?

https://danielcameronmd.com/lyme-disease-cause-cognitive-dysfunction-dementia/  Video Here

Can Lyme disease cause cognitive dysfunction or dementia?

lyme-disease-dementia

Welcome to another Inside Lyme Podcast with your host Dr. Daniel Cameron. In this episode, Dr. Cameron will be discussing a paper that addresses the question, “Can Lyme disease cause objective cognitive dysfunction or dementia?”

By

The question of whether Lyme disease could cause dementia was addressed by Wormser and colleagues in an article entitled “Lack of Convincing Evidence That Borrelia burgdorferi Infection Causes Either Alzheimer Disease or Lewy Body Dementia,” published in the journal Clinical Infectious Diseases.¹

The authors reviewed a paper by Gadila et al.² which concluded that a Lyme disease infection might cause Lewy body dementia. The case described a 69-year-old woman who died 15 years after her initial infection with Lyme disease with a clinical diagnosis of Lewy body dementia.

The woman had initially presented with an erythema migrans rash, headache, joint pain, and fever. Her symptoms resolved with 10 days of doxycycline.

Over time, she developed a sleep behavior disorder, cognitive problems (processing speed, mental tracking, and word-finding), photophobia, paresthesias, fasciculations, and myoclonic jerks. She initially improved with IV followed by oral antibiotics. But her condition later worsened.

“The extensive workup at that time led to the diagnoses of both a REM behavioral disorder with verbalizations and movements and a neurodegenerative dementia characterized by expressive aphasia, visual agnosia, anomia, deficits in executive function and calculation, and mild memory problems.”

She passed away 15 years after the onset of her illness.²

An autopsy revealed the presence of Borrelia burgdorferi in the brain and spinal cord tissue of the patient.

The authors point out, “These results, however do not clarify whether the Borrelia infection had anything to do with her progressive neurodegenerative disorder.”

“Lewy body dementia is characterized by fluctuations in cognitive function, sometimes also with fluctuations in alertness and attention,” wrote Wormser et al.

The authors also added, “Patients with Lewy body dementia are easily distracted and can appear to be ‘zoning out’ at times. Impaired job performance is a common early sign, and patients with Lewy body dementia have problems with multitasking. Sleep disorders are common.”¹

No precise test can accurately diagnose Lewy Body Dementia (LBD). “Due to the incomplete specificity in the clinical diagnosis and the pathological definition of the disease, a postmortem biopsy or autopsy is the only method to secure a definite diagnosis,” explains Haider et al.³

Can Lyme disease cause dementia?

In their article, Wormser et. al conclude, “no convincing evidence exists that Lyme disease is a cause of either Alzheimer disease or Lewy body dementia.”

The authors expressed concern over the validity of laboratory testing, as it did not meet the CDC criteria and the temporary effectiveness of the antibiotic treatment prescribed. They also had reservations regarding the use of a nested PCR technique and the immunofluorescence antibody test.

“Cognitive complaints, such as concentration or memory disturbances, are common in patients with Lyme disease and in patients with residual subjective symptoms after treatment for Lyme disease,” Wormser et al. suggest.

“Dementia-like syndromes from Lyme disease occur as a consequence of the very rare late neurologic manifestation of Lyme disease referred to as chronic progressing meningoencephalomyelitis (also referred to as chronic encephalomyelitis).”

“Anecdotal evidence, however, does suggest that Lyme disease may rarely cause dementia.”¹

These dementia-like Lyme cases are primarily in Europe. “Thus, the few reported cases of dementia-like syndromes from Lyme disease are clinically very different from the Lewy body dementia case attributed to Lyme disease by Gadila and colleagues.”

The following questions are addressed in this Podcast episode:

1. What is Lewy body dementia?
2. How is Lewy body dementia diagnosed?
3. What findings in this patient suggested Lewy body dementia?
4. What cognitive problems have been described in Lyme disease?

Thanks for listening to another Inside Lyme Podcast. Please remember that the advice given is general and not intended as specific advice to any particular patient. If you require specific advice, please seek that advice from an experienced professional.

Inside Lyme Podcast Series

This Inside Lyme case series will be discussed on my Facebook page and made available on podcast and YouTube.  As always, it is your likes, comments, and shares that help spread the word about this series and our work. If you can, please leave a review on iTunes or wherever else you get your podcasts.

References:
  1. Wormser GP, Marques A, Pavia CS, Schwartz I, Feder HM, Pachner AR. Lack of Convincing Evidence that Borrelia burgdorferi Infection Causes Either Alzheimer’s Disease or Lewy Body Dementia. Clin Infect Dis. Nov 29 2021;doi:10.1093/cid/ciab993
  2. Gadila SKG, Rosoklija G, Dwork AJ, Fallon BA, Embers ME. Detecting Borrelia Spirochetes: A Case Study With Validation Among Autopsy Specimens. Front Neurol. 2021;12:628045. doi:10.3389/fneur.2021.628045
  3. Haider A, Spurling BC, Sanchez-Manso JC. Lewy Body Dementia. StatPearls. 2022.

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For the other side of the story:  https://madisonarealymesupportgroup.com/2022/01/05/study-association-of-pathogens-biofilms-with-alzheimers-disease-but-wormser-repeats-no-evidence-mantra/

Category:

Alzheimer's, Lyme, research

My Battle & Recovery From Lyme Disease, From the View of My Mother

https://thehive.health/my-lyme-disease-story-from-the-view-of-my-mother/

My Battle and Recovery from Lyme Disease, From The View of My Mother

Debbie + Liz Floyd | The Hive

This article was written by my mother, Debbie Floyd – my biggest health advocate and the woman I learned everything from. This was originally written for Sunlighten Saunas for Lyme Disease Awareness Month. She was the Director of Klinghardt Academy for 10+ years and currently the Director of Discovery Health Solutions – a continuing education program for doctors, nurses and health practitioners. She has helped hundreds of people navigate their dis-ease – and if you’re dealing with Lyme, you know it takes a village.

Here is our story. (See link for article)

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For more:

Category:

Activism, Lyme, Treatment

Lyme Carditis Case

http://

Canadian Medical Association Journal — CMAJ

A young man’s Lyme disease progresses quickly

In July of 2018, Samuel, age 37, died from complications of Lyme disease. He developed Lyme carditis associated with B. burgdorferi infection, transmitted by a tick bite. Sudden cardiac death can occur in a small subset of patients with Lyme carditis.
In this video, Samuel’s family and physicians share his story in the hopes of raising awareness of symptoms. This video is linked to a case published in the Canadian Medical Association Journal.
Full article: www.cmaj.ca/lookup/doi/10.1503/cmaj.191194 Tick photo: CDC/ Michael L. Levin, PhD; Jim Gathany
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Category:

Heart Issues, Lyme

Live Webinar & Q&A: Lyme, EBV, & More

https://rawlsmd.com/webinars/lyme-ebv-more/

Live Webinar + Q&A: Lyme, EBV, & More

Enduring chronic Lyme disease is bad enough. Add to that a viral coinfection such as Epstein-Barr virus (EBV), cytomegalovirus, or another, and your illness becomes even more severe, plus recovery can take significantly longer. And while viruses like EBV tend to pop up periodically during Lyme treatment, overcoming them is possible — and you don’t have to do it all alone.

Join a live webinar with Dr. Bill Rawls, author of the best-selling book Unlocking Lyme, who knows firsthand what it’s like to struggle with chronic Lyme disease and the viral coinfections that can go hand in hand with it. You’ll discover what really matters when it comes to diagnosing EBV and other viruses, plus the best natural and conventional remedies for easing symptoms and restoring your health.

Since his recovery more than a decade ago, Dr. Rawls has helped thousands of patients find their path to healing from Lyme disease and coinfections. Now, he’d like to help you. Come with your questions, and he’ll answer as many of them as possible. PLUS: Don’t miss an exclusive gift for those who attend the live webinar.

In this webinar, Dr. Rawls will discuss:

What are the telltale signs of EBV?

• Do you need to know which viral coinfection(s) you have before seeking treatment?

• Are there reliable testing methods for EBV and other viruses?

• What are the best herbal and natural remedies for EBV?

• How can you tell for certain when EBV is gone?

• Numerous other insights and answers on EBV and viruses throughout the live Q&A with Dr. Rawls

RESERVE MY SEAT »

Category:

Herbs, Lyme, Testing, Treatment, Uncategorized, Viruses