Archive for the ‘Lyme’ Category

Lyme Memoir

https://www.lymedisease.org/my-promise-to-alex-lyme-memoir/

TOUCHED BY LYME: “My Promise to Alex” –a memoir and a call to arms

Alex Hudson grew up in Fresno, California. When she was 11 years old, she started complaining that her legs hurt.

That was the beginning of Alex’s “mystery illness,” with waxing and waning symptoms that a parade of doctors couldn’t figure out. Sometimes her knees swelled up to the size of grapefruit. Arthroscopic knee surgery didn’t help.

Throughout junior high, high school and the beginning of college, the health hits kept coming. Legs that collapsed beneath her without warning. Severe tooth pain. Intolerance to many foods, accompanied by stomach pains, nausea, diarrhea. Depression and anxiety. Difficulty breathing.

Doctors and hospital visits brought no answers.

“Visits to the ER were becoming our new norm,” her mother Jody later wrote. “I hoped each time we went that maybe this would be the time that doctors would figure out what caused these episodes. But the results were forever the same. Embarrassed, we left feeling that we were the problem, and this wasn’t real. Way too often, I apologized to the medical professionals for taking up their valuable time.”

Pummeled by cascading health problems, Alex’s 5-foot-7-inch body withered away. When her weight dwindled to 86 pounds, doctors advised putting her in a psychiatric facility for eating disorder treatment. Alex and Jody didn’t agree and kept looking for answers.

Finally, a diagnosis

After a decade of suffering, Alex finally connected with a doctor who diagnosed her with Lyme disease and mast cell activation syndrome (MCAS).

(Mast cells are a complicated part of the immune system. When they go haywire, they can give rise to rampant inflammation throughout the body, triggering food allergies and other reactions Alex experienced.)

But even though the “mystery illness” now had a name, the path forward remained murky. Alex’s fragile body couldn’t tolerate any of the suggested treatments. Mother and daughter tried their best to find something–anything–that could turn things around.

But, 10 years of extensive damage was too much for Alex’s body to withstand. In 2018, she passed away at the age of 22, weighing 57 pounds.

Not the end of her story

Her brokenhearted mother could not let that be the end of Alex’s story. Vowing that “through pain comes purpose,” Jody formed the Alex Hudson Lyme Foundation.

The non-profit organization aims to educate the public about Lyme disease and MCAS and to support research into both conditions. As part of that effort, Jody has released a book called “My Promise to Alex.”

It’s both a memoir and a call to arms.

In it, she recounts the last decade of Alex’s life in poignant detail, painting a tender portrait of a young woman who had much to offer the world—and who tried her best to keep living in it.

The book underscores the appalling fact that mainstream medicine simply doesn’t know much about Lyme disease and related conditions. Doctors aren’t looking for it in the first place, and they can’t recognize it when it stares them in the face. And unfortunately, Alex paid for that ignorance with her life.

In memory of Alex, Jody has firmly set the intention to help change that situation. Forming the foundation and publishing “My Promise to Alex” are both ways to help carry out that mission. I applaud Jody for her bravery and her dedication.

This travesty should never have happened to Alex. May we honor her memory by working for a world where such a thing will never occur again.

Click to learn more about the Alex Hudson Lyme Foundation.

Click to order this book.

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.

________________

**Comment**

I can hardly read these stories they are so painful.  When I think of how this story could have ended so differently, it propels me forward to continue to get the word out on how devastating this illness truly can be and the importance of early diagnosis and treatment.

Everyone now admits that catching Lyme/MSIDS early and getting on treatment promptly is key, yet no movement is being made toward these facts.  Too many vested interests and ego are involved for true lasting help and answers, so nothing changes and people continue to needlessly suffer and even die.

Category:

Activism, Lyme

The Chronic Lyme Debate Part 2

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u

The Chronic Lyme Debate Part 2

Carl Tuttle

Hudson, NH, United States

Mar 2, 2022 — 

The following email was sent to all members of the Tick-Borne Disease Working Group as a follow-up to yesterday’s Petition Update:

The Chronic Lyme Debate and tag team of Sood and Dixon
https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/30273194

Since the start of these TBDWG meetings, the Federal Representatives have all been fixated on the Klempner antibiotic trials (which were stopped after three months) and have completely ignored the mountain of evidence from other studies and autopsy reports identifying persistent infection (chronic Lyme) following extensive antibiotic treatment.

The 2001 antibiotic treatment study found; “no evidence of B. burgdorferi in a total of more than 700 different blood and cerebrospinal fluid samples from the 129 patients in these studies.”

Two Controlled Trials of Antibiotic Treatment in Patients with Persistent Symptoms and a History of Lyme Disease
http://www.nejm.org/doi/full/10.1056/NEJM200107123450202#article_references#t=references

Not a single positive Dr. Klempner? Doesn’t this statistically prove that your methodology was fatally flawed???

Today’s Letter to the Tick-Borne Disease Working Group:

———- Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: “Dennis.Dixon1@nih.hhs.gov”  <tickbornedisease@hhs.gov>
(All members of the TBDWG)
Date: 03/01/2022 10:00 AM
Subject: The Chronic Lyme Debate

On 02/28/2022 5:40 PM CARL TUTTLE <runagain@comcast.net> wrote: “Ms. Logan was treated with many months of oral and IV antibiotics so how does this one single patient culture immediately positive for the infection when hundreds of test subjects from the Klempner trials did not?”

To: The Tick-Borne Disease Working Group,

In reference to the Klempner antibiotic trials please see the 2018 letter below addressed to Dr. Klempner; there was no response.

Carl Tuttle

———- Original Message ———-
From: Carl Tuttle <runagain@comcast.net>
To: mark.klempner@umassmed.edu
Cc: michael.collins@umassmed.edu, ddutko@hanszenlaporte.com, ryan.kantor@usdoj.gov, michelle.seltzer@usdoj.gov, william.rinner@usdoj.gov, makan.delrahim@usdoj.gov, tickbornedisease@hhs.gov, Elias, John, officeofthechancellor@umassmed.edu
Date: April 27, 2018 at 7:53 AM
Subject: Persistent Borrelia Infection in Patients with Ongoing Symptoms of Lyme Disease

April 27, 2018

University of Massachusetts Medical School
55 Lake Avenue North
Worcester, Massachusetts 01655
Attn: Mark S. Klempner, MD, Executive Vice Chancellor, MassBiologics

Dr. Klempner,

I would like to call attention to the attached study recently identifying chronic Lyme disease in twelve patients from Canada.

Persistent Borrelia Infection in Patients with Ongoing Symptoms of Lyme Disease
http://www.mdpi.com/2227-9032/6/2/33

All of these patients were culture positive for infection (genital secretions, skin “Morgellons” and blood) even after multiple years on antibiotics so there was no relief from current antimicrobials. Some of these patients had taken as many as eleven different types of antibiotics.

In contrast, your 2001 antibiotic treatment study found; “no evidence of B. burgdorferi in a total of more than 700 different blood and cerebrospinal fluid samples from the 129 patients in these studies.”

Two Controlled Trials of Antibiotic Treatment in Patients with Persistent Symptoms and a History of Lyme Disease
http://www.nejm.org/doi/full/10.1056/NEJM200107123450202#article_references#t=references

Not a single positive Dr. Klempner? Doesn’t this statistically prove that your methodology was fatally flawed?

Did you culture skin and genital secretions as the Middelveen paper reports? It would appear that you conveniently stopped looking after your results supported the existing thirty year dogma; chronic Lyme does not exist.

Persistent Lyme disease is not new and has been intentionally/deceitfully suppressed for decades as described in the Vicki Logan case identified in the following letter to past CDC Director Barbara Fitzgerald:

https://www.dropbox.com/s/xaul84dqmqgbre0/Brenda%20Fitzgerald%20MD%20Director%20CDC.docx?dl=0

In 1991 B. burgdorferi had been isolated in culture from Vicki Logan’s CSF (CDC’s laboratory in Fort Collins CO.) despite prior treatment with 21 days of IV cefotaxime and 4 months of oral minocycline.

The dishonest science here in the U.S. has denied chronic Lyme which stifled research to find a curative approach. Now the rest of the world is suffering.

We have lost nearly four decades to this 21st century plague due to the racketeering scheme identified in the RICO lawsuit filed by SHRADER & ASSOCIATES, LLP against the Infectious Disease Society of America, seven IDSA Panelists and eight insurance companies. The U.S. Centers for Disease Control has aligned itself with the seven IDSA Panelists identified in this lawsuit.

Court Document:
https://www.courthousenews.com/wp-content/uploads/2017/11/LymeDisease.pdf

Lyme is an incurable disease when not treated immediately which is spreading across North America and deceitfully misclassified as a low-risk and non-urgent health issue. Patient experience is describing a disease that is destroying lives, ending careers, causing death and disability while leaving victims in financial ruin. Current antimicrobials are ineffective for eradicating all forms of the Borrelia spirochete.

Public outcry has been ignored for decades while the Centers for Disease Control sat on evidence that this infection was not easily treated with a one size fits all treatment approach as dictated by the Infectious Diseases Society of America.

Once again your studies were fatally flawed while supporting the controlling dogma leaving hundreds of thousands if not millions worldwide with a persistent infection and absolutely no relief. We have another AIDS on our hands.

Carl Tuttle

Independent Researcher

Lyme Endemic Hudson, NH

Cc: -Michael F. Collins, Chancellor

-The Tick Borne Disease Working Group

-US Department of Justice

-Daniel R. Dutko, HANSZEN LAPORTE

Persistent Borrelia Infection in Patients with Ongoing Symptoms of Lyme Disease
Persistent Borrelia Infection in Patients with Ongoing Symptoms of Lyme Disease
Introduction: Lyme disease is a tickborne illness that generates controversy among medical providers and researchers. One of the…
https://www.mdpi.com

Thanks to your support this petition has a chance at winning! We only need 52,056 more signatures to reach the next goal – can you help?

_______________________

Category:

Activism, Lyme, research

The Chronic Lyme Debate & Tag Team of Sood and Dixon

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u

The Chronic Lyme Debate and tag team of Sood and Dixon

Carl Tuttle

Hudson, NH, United States

Mar 1, 2022 — 

The following correspondence was sent to the Tick-Borne Disease Working Group following today’s scheduled online meeting. The second meeting will be held tomorrow March 1st…

February 28 – March 1, 2022, TBDWG Meeting (online)

https://www.hhs.gov/ash/advisory-committees/tickbornedisease/meetings/2022-02-28/index.html

———- Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: “Dennis.Dixon1@nih.hhs.gov” <Dennis.Dixon1@nih.hhs.gov>, “SSood@nshs.edu” <SSood@nshs.edu>
Cc:  “tickbornedisease@hhs.gov” <tickbornedisease@hhs.gov>
(All members of the TBDWG)
Date: 02/28/2022 5:40 PM
Subject: Re: Questioning the appointment of Dr. Sunil K. Sood to the Working Group

To: Drs Dixon and Sood,

I happened to log onto today’s session right when the topic was persistent infection. I just finished a round of doxycycline for a chronic epididymitis that I have been treating for the past five months! As soon as symptoms return, I have been prescribed yet another antibiotic and the urologists aren’t telling me it’s post treatment epididymitis.

In my early twenties it took eighteen months to clear a chronic prostatitis and the military clinicians at the time didn’t say, “You’ve had enough antibiotics because chronic prostatitis is a religious belief.”

In reference to Lyme, my daughter returned to baseline health after 3.5yrs on a combination of antibiotics and my wife returned to baseline health after 2.5 years; both were seriously ill. Thanks to Dr. Sam Donta they received a diagnosis because both had CDC negative Western blots.  

I sent you and all members of the TBDWG a copy of Lyme patient Vicki Logan’s positive culture test performed at the CDC’s Fort Collins lab. Ms. Logan was treated with many months of oral and IV antibiotics so how does this one single patient culture immediately positive for the infection when hundreds of test subjects from the Klempner trials did not? You can understand why the Lyme patient community is suspect of NIH trials that may have design flaws leading to results that support the existing dogma.

In addition, what about this study of twelve Lyme patients from Canada?

Persistent Borrelia Infection in Patients with Ongoing Symptoms of Lyme Disease
http://www.mdpi.com/2227-9032/6/2/33

All of these patients were culture positive for infection (genital secretions, skin “Morgellons” and blood) even after multiple years on antibiotics so there was no relief from current antimicrobials. Some of these patients had taken as many as eleven different types of antibiotics.

Dr. Dixon, one of those studies you mentioned today showed patients with Lyme had a quality of life equal or worse to those with congenital heart disease and yet Lyme patients are routinely denied Social Security Disability compensation. Why is that?

For the record, here are links to the seven-page autopsy results of patient Vicky Logan showing histopathologic findings consistent with neurologic manifestations of chronic Lyme disease. (personal Dropbox storage area)

(Vicky Logan’s Autopsy results Page #1, 2, 3, 4, 5, 6, 7)

The destructive nature of Borrelia is evident in Vicky Logan’s liver (nutmeg liver), kidneys, heart, lungs and brain. The patient died after the insurer refused additional IV antibiotic therapy. (Medical Execution)

And we’re still debating persistent infection? WHY???

See additional references below…

Respectfully submitted,

Carl Tuttle
Hudson, NH

1. Seronegative Chronic Relapsing Neuroborreliosis.
https://www.ncbi.nlm.nih.gov/pubmed/7796837
Lawrence C.a · Lipton R.B.b · Lowy F.D.c · Coyle P.K.d

aDepartment of Medicine, bDepartment of Neurology, and cDivision of Infectious Diseases, Albert Einstein College of Medicine, and dDepartment of Neurology, State University of New York at Stony Brook, New York, NY., USA

Eur Neurol 1995; 35:113–117 (DOI:10.1159/000117104)

Abstract

We report an unusual patient with evidence of Borrelia burgdorferi infection who experienced repeated neurologic relapses despite aggressive antibiotic therapy. Each course of therapy was associated with a Jarisch-Herxheimer-like reaction. Although the patient never had detectable free antibodies to B. burgdorferi in serum or spinal fluid, the CSF was positive on multiple occasions for complexed anti-B. burgdorferi antibodies, B. burgdorferi nucleic acids and free antigen.
___________________________________________________
Let’s review another early publication where persistent infection was recognized:

May 13, 1988

2. Fatal Adult Respiratory Distress Syndrome in a Patient With Lyme Disease
Michael Kirsch, MD; Frederick L. Ruben, MD; Allen C. Steere, MD; et al
JAMA. 1988;259(18):2737-2739. doi:10.1001/jama.1988.03720180063034

Abstract

A dry cough, fever, generalized maculopapular rash, and myositis developed in a 67-year-old woman; she also had markedly abnormal liver function test results. Serologic tests proved that she had an infection of recent onset with Borrelia burgdorferi, the agent that causes Lyme disease. During a two-month course of illness, her condition remained refractory to treatment with antibiotics, salicylates, and steroids. Ultimately, fatal adult respiratory distress syndrome developed; this was believed to be secondary to Lyme disease.

3. Granulomatous hepatitis associated with chronic Borrelia burgdorferi infection: a case report
http://www.labome.org/research/Granulomatous-hepatitis-associated-with-c
The patient had active, systemic Borrelia burgdorferi infection and consequent Lyme hepatitis, despite antibiotic therapy. Spirochetes were identified as Borrelia burgdorferi by molecular testing with specific DNA probes.

4. Culture evidence of Lyme disease in antibiotic treated patients living in the Southeast.
http://danielcameronmd.com/culture-evidence-of-lyme-disease-in-antibioti
Rudenko and colleagues reported culture confirmation of chronic Lyme disease in 24 patients in North Carolina, Florida, and Georgia. All had undergone previous antibiotic treatment

5. DNA sequencing diagnosis of off-season spirochetemia with low bacterial density in Borrelia burgdorferi and Borrelia miyamotoi infections.
https://www.ncbi.nlm.nih.gov/pubmed/24968274
Faulty/misleading antibody tests landed a sixteen year old male in a psychiatric ward when his lab results did not meet the CDC’s strict criteria for positive results. His Western blot had only four of the required five IgG bands. Subsequent DNA sequencing identified a spirochetemia in this patient’s blood so his psychiatric issues were a result of neurologic Lyme disease misdiagnosed by antiquated/misleading serology. This patient was previously treated with antibiotics.

6. The Long-Term Persistence of Borrelia burgdorferi Antigens and DNA in the Tissues of a Patient with Lyme Disease
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6963883/
Autopsy tissue sections of the brain, heart, kidney, and liver were analyzed by histological and immunohistochemical methods (IHC), confocal microscopy, fluorescent in situ hybridization (FISH), polymerase chain reaction (PCR), and whole-genome sequencing (WGS)/metagenomics. We found significant pathological changes, including borrelial spirochetal clusters, in all of the organs using IHC combined with confocal microscopy.

7. Persistent Borrelia Infection in Patients with Ongoing Symptoms of Lyme Disease
http://www.mdpi.com/2227-9032/6/2/33
“This pilot study recently identified chronic Lyme disease in twelve patients from Canada. All of these patients were culture positive for infection (genital secretions, skin and blood) even after multiple years on antibiotics so there was no relief from current antimicrobials. Some of these patients had taken as many as eleven different types of antibiotics.”
________________________

Persistent infection after extensive antibiotic treatment has been identified through the use of direct detection methods in academic centers and autopsy findings yet the average patient cannot obtain these tests to justify how sick they are with their chronic active infection. Serology cannot be used to gauge treatment failure or success which makes it the ideal tool for concealing persistent infection.

Serology has allowed the 30-year dogma to persevere [iii] whereas direct detection methods are exposing the exact opposite.

We are dealing with a life-altering/life-threatening infection with faulty/misleading antibody tests, inadequate treatment, no medical training and absolutely no disease control whatsoever; a public health disaster. And what was the reason for the mishandling of this coexisting pandemic you might ask?

A chronic relapsing seronegative disease does not fit the vaccine model. The rush to create a vaccine here in the United States promoted the denial of persistent infection and focusing on the acute stage of disease hides the horribly disabled.

February 28 – March 1, 2022, TBDWG Meeting (online)

Live Webcast: https://www.hhs.gov/live/index.html Written Public Comment Day 1 – February 28, 2022 10:00- 10:10 am Welcome from the Working Group Roll Call: During roll call members are asked to state their organization and…
https://www.hhs.gov

Thanks to your support this petition has a chance at winning! We only need 52,101 more signatures to reach the next goal – can you help?

_________________
**Comment**
Tuttle is spot on. Why is a persistent infection with Lyme/MSIDS titled “post Lyme disease syndrome,” when other diseases are not labeled in such a way to purposefully deny persistent infection, and therefore appropriate treatment addressing the root of the problem?  He asks a great question and he also answers it: “a chronic, relapsing seronegative disease does not fit the vaccine model.”
Our government needs to cease and desist from being aligned with Big Pharma by owning patents on vaccines, owning patents on tests, as well as the organisms, and treatments.  Until they are prohibited from being allowed to have these conflicts, transparency is a pipe-dream, and patients will never be truly helped.  It’s very simple.  Further, there needs to also be a separation between industry, research institutions, monitoring boards, the media, medicine, and the government.  There needs to be serious accountability in science.  For science to prosper, there needs to be healthy debate, free speech, and honesty in research.  This has been lost – perhaps forever.
We too benefited from long-term treatment addressing all the coinfections, the pleomorphism of borrelia (Lyme), as well as periodic short stints of treatment when we relapse.  Many who are able to find this integrated, holistic treatment do as well, unfortunately, due to the way public health ‘authorities’ are labeling and defining this, mainstream medicine remains hopelessly in the Dark Ages, with doctors too afraid to treat, and many patients suffering needlessly due to misdiagnosis, denial, and/or lack of appropriate treatment.
For more:

Category:

Activism, Lyme

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.

_________________

**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