Archive for the ‘Psychological Aspects’ Category

ILADS Announces 1st Ever Conference For Mental Health Issues Related to Tick-borne Diseases

ILADS in San Francisco

Saturday, September 7, 2019

ILADSLogoCMYK-300x138
ILADS is pleased to announce its first-ever meeting for medical professionals devoted specifically to mental health issues as they relate to tick-borne diseases.

Mental health disorders can be a manifestation of Lyme and other tick-borne disease. Addressing the infection is one part of treatment for the cognitive and emotional symptoms.

This one-day Mental Health Basics course will present the multiple theories, diagnostic methods, medication and treatment interventions that are used to alleviate the neuropsychiatric and neuropsychological impacts on those suffering from Lyme and other tick-borne-illnesses.

The meeting will be held at the

San Francisco Airport Westin,

Millbrae, California.

Click here for more information

48 Symptoms of Lyme Disease: What They Look Like & How They Feel

http://

48 Symptoms of Lyme Disease: What They Look Like & How They Feel

Published on Aug 28, 2017

Lyme and Chronic Lyme Disease Symptoms can imitate diseases like Multiple Sclerosis, ALS, Rheumatoid Arthritis, Fibromyalgia, Binge Eating Disorder and Lupus.
In this video I share my personal experience with Lyme Disease, and I share how the symptoms felt, so that friends, family and doctors can understand what it’s like to live with Lyme, Chronic Lyme, or advanced Lyme.
_________________
**Comment**
Great video and so true.  You will find yourself shaking your head a lot while viewing this.  Remember Dr. Jemsek’s famous quote:
“You either have 20 diseases or you have Lyme disease.”

Of course, by Lyme disease, I actually mean Lyme/MSIDS, as we are typically infected with much more than just Lyme (borrelia), which means our cases are more severe, of longer duration, & necessitate numerous medications:  https://madisonarealymesupportgroup.com/2018/10/30/study-shows-lyme-msids-patients-infected-with-many-pathogens-and-explains-why-we-are-so-sick/

MSIDS = multi, systemic infectious disease syndrome = one sick dog.

When Lyme Disease Doesn’t Go Away

https://news.columbia.edu/news/when-lyme-disease-doesnt-go-away

When Lyme Disease Doesn’t Go Away

It’s tick season. Here’s what Brian Fallon, the director of Columbia’s Lyme & Tick-borne Diseases Research Center, has to say about combating chronic Lyme disease.
By

Carla Cantor
April 29, 2019

Brian A. Fallon, (VP&S ’85, MPH ’85) spent his early career working with patients whose medical symptoms were a mystery. The Columbia University Irving Medical Center psychiatrist became one of the foremost researchers of hypochondria and somatic disorders, or psychological illness that manifests as physical symptoms.

He might have stayed with that specialty had he not begun in the early 1990s to see a surge in referrals of patients with chronic, unexplained symptoms who had all been healthy—until they got Lyme disease. These patients suffered from chronic pain, fatigue and cognitive problems that had a debilitating effect on their lives. They all had been treated with antibiotics with partial response but then relapsed.

Since such persistent infection was considered impossible, they were told they were hypochondriacs.

“At the time, the medical community was saying that initial antibiotic therapy led to a cure,” Fallon said. “I found this hard to believe given the suffering among these patients. We needed to look further.”

Since 2007 Fallon has headed Columbia’s Lyme & Tick-borne Diseases Research Center, a joint effort by the Global Lyme Alliance, the Lyme Disease Association and the Columbia University Medical Center Board of Trustees. It is the first such academic research center in the country, and its mission is to tackle the core clinical questions of the disease and identify better diagnostics, biomarkers and treatments.

Fallon discusses why this is a pivotal time in the world of Lyme disease.

Book cover of Conquering Lyme Disease

Q. Lyme disease was first reported in the United States in 1977 in the town of Old Lyme, Connecticut.  How far have we come?

A. We still have many unanswered questions, but there has been tremendous progress. We now know the cause of the disease, a bacterium called Borrelia burgdorferi, and its multi-system manifestations. We know many of the biologic tricks the organism uses to evade the human immune response and we know its genetic makeup, as it has been fully sequenced. We know that while most Borrelia are easily eradicated with a standard course of antibiotics, some persist despite treatment. We briefly had a vaccine on the market, which is no longer available, but a new vaccine is now in clinical trials. Despite advances in some areas, there remain serious problems, most prominently that the epidemic of Lyme disease continues to expand both geographically and in the number of new cases—an estimated 400,000 in the United States each year.

Q. What are the symptoms of chronic Lyme disease and how is it diagnosed? What percentage of Lyme sufferers go on to have chronic problems?

A. Most patients do well if the infection is recognized and treated early. In about 10 to 20 percent of cases, patients develop a more severe disease whose symptoms can include debilitating pain, fatigue, headaches, mental fog causing difficulty with memory or finding words, irritability and  sleep disorders. Unfortunately, because our blood tests are antibody-based and can remain positive for years even when infection is no longer present, it is hard to determine whether a patient’s recurrent symptoms are due to persistent infection, a new infection or a post-infectious disorder.

Q. Why does post-treatment Lyme disease affect some people and not others?

A. This is an important question for which we have only preliminary answers. Infection by a more invasive strain of the Borrelia microbe, rather than one that only causes skin manifestations, increases the risk of more severe disease. Certain genetic markers increase the risk of chronic Lyme arthritis. Patients with a history of multiple physical illnesses and other life stressors may have less resilience to infection. And because the tick may transmit other microbes, some patients may have two or more infections.

Q. What are the current treatments for persistent Lyme disease?

A. There are multiple approaches to the treatment of lingering symptoms, but there haven’t been any new, large clinical trials in the U.S. on chronic Lyme-related symptoms in over 10 years. Studies in Europe of early Lyme disease indicate that some of these patients improve without further treatment over the course of one year after initial antibiotic therapy. Patients with chronic symptoms need a personalized approach based on the cause of their symptoms.

Q. Is there hope of finding a cure?

A. Absolutely. With precision medicine approaches, biomarkers are now emerging that appear able to predict who might respond to standard antibiotic therapy and those who might not. This provides an opening for testing new treatment approaches for the latter group, leading to improved long-term outcome.


Dr. Fallon is co-author of Conquering Lyme Disease: Science Bridges the Great Dividewith Dr. Jennifer Sotksy ( VP&S’16,) a fourth-year psychiatry resident at Columbia University Irving Medical Center. (Columbia University Press, 2017 hardcover,  2019 paperback)

For media inquiries or more information, contact Carla Cantor at 212-854-5276 or carla.cantor@columbia.edu.

__________________

**Comment**

  • Again, the erroneous percentages of 10-20% of patients going on to develop persistent symptoms is inaccurate.  There’s a whole lot more of us out here in Lyme-land than that.  Please read:  https://madisonarealymesupportgroup.com/2019/02/25/medical-stalemate-what-causes-continuing-symptoms-after-lyme-treatment/  In a nutshell, microbiologist Holly Ahern points out that the 10-20% the CDC calls PTLDS only includes those patients diagnosed and treated early.  It does not and should not include a large subset of patients (30-40%) diagnosed and treated late.  When you add the two groups together, you get 60% of patients going on to struggle with persisting symptoms.  This is an important detail as it shows the vast numbers struggling as well as the need for high priority research studying this issue.  

 

  • He discusses strains of borrelia.  I learned something the other day – that borrelia (Lyme) is unique in that bacteria are typically only allowed 1 species name, but due to honoring Willy Burgdorfer, all borrelia are “Lyme.” This little fly in the ointment is a huge reason many are not getting diagnosed.  Current 2-tiered testing only tests for 1 strain. I was told by a researcher to think of the Borrelia burgdorferi sensu lato complex as an umbrella, and the 23 genospecies are dangling from it (soon to be 24, BTW!) This may be why Southerners struggle with getting a diagnosis. STARI may be one of these borrelia that doesn’t fit into the box researchers have created for this night-mare.

 

 

  • He also found IV’s give much higher blood levels of drugs than orals, and that the following variables necessitated IV treatment:
    1. Spinal tap shows high inflammation (high protein)
    2. High Sed rate and synovitis (inflammation of synovial membrane)
    3. People sick for more than 1 year
    4. Age over 60
    5. Acute carditis
    6. Immune deficiency
    7. Those who used immunosuppressants
    8. Failed oral treatment

 

  • If you study this for 1 second you begin to appreciate the complexity of treating this which mainstream doctors still haven’t even accepted.

 

  • The fact that there haven’t been any new, large clinical trials in the U.S. on chronic Lyme-related symptoms in over 10 years is unacceptable when you consider that this is two times more prevalent than breast cancer.  HELLO?  Where’s the green ribbons and huge institutions raising funds for Lyme research?  Oh, yeah, I remember, our researchers are using their own microscopes in their basements!  https://lymelifescapeswithcaroline.com/2014/03/25/dr-alan-b-macdonald/  MacDonald is shown in the documentary, “Under Our Skin.”  

 

  • BTW: when MacDonald presented his culture findings (direct testing) at a meeting of the NY State medical society where there were many detractors from Yale & Stoneybrook who didn’t want their patented serological tests to be usurped. They accused him of falsifying his results.  Dr. McDonald then went on to prove conclusively it was Lyme by morphology, silver staining, monoclonal antibodies staining, DNA PCR and finally electron microscopy.  Frustrated, he quit the field and moved to Texas leaving all his old files in Burrascano’s basement until twenty years went by and he became interested again due to Alzheimer’s research & picked up his old files. https://madisonarealymesupportgroup.com/2019/02/22/why-mainstream-lyme-msids-research-remains-in-the-dark-ages/

 

 

 

 

 

ILADS May Newsletter

May 2019 ILADS Newsletter
Lyme Awareness Month
In honor of Lyme Awareness Month, this month’s newsletter includes access to free educational materials.

See details below, and have a healthy Lyme Awareness Month.

Member Spotlight: 

William Padula, MD

In this ILADS webinar, Dr. Padula discusses the consequences of tick-borne diseases on vision and vision processing. Select Research & Literature on our website at www.ilads.org  to view the full video.
When Your Child Has Lyme Disease: A Parent’s Survival Guide

In honor of May Lyme Awareness Month, ILADS member Sandra K. Berenbaum, LCSW, BCD and her co-author, Dorothy Kupcha Leland, are making their book available free in Kindle edition today through Saturday.
ILADS is pleased to announce the agenda for Madrid 2019: Lyme Disease – Environmental Disease of the 21st Century. 

There are only a few weeks left to register, so visit the Madrid 2019 Conference page at www.ilads.org today to reserve your spot for June 8-9, 2019.

Saturday, June 8, 2019

Morning Session:

Castellana Conference Room
Moderator: ILADS President Leo J. Shea III, PhD

 
09:00-09:15 Carmen Navarro, MD, Program Chair
Welcome

09:15-09:45 Louis Teulieres, MD, PhD
Chronic Infections, Hormonal Dysfunctions and Heavy Metals Connections in Autism

09:45-10:15 Carmen Navarro, MD
Lyme Disease in Spain – Updated

10:15-10:45 Magdalena Cubala-Kucharska, MD, PhD
Immunopsychiatry of Children with Lyme and Co-Infections

10:45-11:15 Networking Break with Poster Presentations

11:15-12:00 B. Robert Mozayeni, MD
Bartonella Overlap with Tick-Borne Diseases: Better Diagnosis Supports Better Outcomes

12:00-12:30 Jack Lambert, MD
Congenital Infections in Pregnancy, with Special Focus on Borrelia

12:30-13:00 Question and Answer Period with Morning Faculty

13:00-14:00 Lunch for all registrants

13:30-14:00 Poster Viewing and Oral Poster Presentation

 

Afternoon Session:
Castellana Conference Room
Moderator: ILADS President Leo J. Shea III, PhD
14:00-14:30 B. Robert Mozayeni, MD
Mast-Cell Activation Syndrome and the Host Response: Persistent Infectious Disease or Host Response Disease

14:30-15:00 Pol De Saedeleer, PharmD
The Affected Th1/Th2/Th17 Immune Response

15:00-15:30 Philippe Raymond, MD
How to Make a Clinical Diagnosis of Chronic Lyme Disease or Persistent Polymorphic Syndrome after Tick Bite (SPPT)

15:30-16:00 Networking Break and Poster Viewing

16:00-16:30 Armin Schwarzbach, MD, PhD
Inflammatory Arthritis, Multiple Sclerosis and Other illnesses: Associations with Tick-Borne Diseases in the Complexity of Multiple Infections

16:30-17:00 Marie Mas, MD
PATHOTIQUE Study. Multi-site PCR of Vectorial Diseases in Ticks

17:00-17:30 Question and Answer Period with Afternoon Faculty

Sunday, June 9, 2019

Morning Session Track A: Lyme Basics

Neptuno Conference Room

09:15-10:15 Part 1 – Basic Concepts

10:15-10:45 Networking Break with Poster Viewing

10:45-11:30 Part 2 – Management

11:30-12:30 Part 3 – Pathogenesis

12:30-12:45 Question and Answer Period with Morning Faculty

12:45-14:00 Lunch for All Registrants

Morning Session Track B: Advances in Lyme

Castellana Conference Room

09:15-09:45 Mariia Shklina, MD, PhD
Epidemiology of Lyme in Ukraine

09:45-10:15 Laura Alonso Canal, MD
Pediatric Lyme

10:15-10:45 Networking Break with Poster Viewing

10:45-11:15 Kanneboyina Nagaraju, DVSc, MVSc, PhD
Screening for Autoantibodies in Post Treatment Lyme Disease Syndrome Patients using HuProt Protein Microarray

11:15-11:45 Omar Morales, MD
Complimentary Treatments for Lyme Disease, Babesia, and Other  Blood-Borne Diseases

11:45-12:15 Maria Luisa Garcia Alonso, PharmD
Microbiota and Lyme Disease

12:15-12:30 Oral Poster Presentation

12:30-13:00 Question and Answer Period with Morning Faculty

13:00-14:00 Lunch for All Registrants

Afternoon Session Track A: Lyme Basics

Neptuno Conference Room

14:00-15:30 Steven Bock, MD
Functional Medicine and the Complex Tick-Borne Disease Patient. Part I

15:30-16:00 Networking Break and Poster Viewing

16:00-17:00 Steven Bock, MD
Functional Medicine and the Complex Tick-Borne Disease Patient. Part II

17:00-17:30 Question and Answer Period

17:30 Adjourn

Afternoon Session Track B: Advances in Lyme

Castellana Conference Room

14:00-14:30 Robert Miller, ND
Environmental Toxin Detox Weakness from Genetic Variants Found in Those with Chronic Lyme Disease

14:30-15:00 Kunal Garg, MSc
Challenging the Lyme Monomicrobial Paradigm: Diagnosing Lyme Disease and Beyond

15:00-15:30 Pilar Munoz-Calero, MD
Environmental Contaminants and their Association with Chronic Infectious Diseases, Diagnostic Management and Treatment Difficulty    

15:30-16:00 Networking Break with Poster Viewing

16:00-16:30 Wojciech Ozimek, MD
Lyme Disease, Parasites, Protozoans and Microbiome

16:30-17:00 Tatjana Mijatovic, PhD
Neglected Infections and Gastrointestinal Issues in Patients with Late/Persistent /Chronic Vector-Borne Infections

17:00-17:30 Question and Answer Period with Afternoon Faculty

17:30 Adjourn

Social Events
Friday, June 7, 2019
19:00-21:00 – Reception and Dinner at Palacio de Cibeles
19:00-19:30 – Terrace 6th Floor. Short Welcome Drink
19:30-21:00 – Restaurant Space Collection 2nd Floor. Cocktail Collection
21:00 – Walk along the Paseo de las Artes
Saturday, June 8, 2019
20:00-22:00 – Dinner and Flamenco Show at Café de Chinitas
22:00 – Walk through the Madrid of the Austrias
Tick-Borne Diseases and Mental Health:
A One-Day Course for Medical Professionals

September 7, 2019

This fall, ILADS brings three nationally-recognized practitioners to San Francisco to offer insight into the mental health aspects of Lyme/TBDs. We hope you will attend and enhance your knowledge for the benefit of your patients. Westin-San Francisco Airport Hotel, Bayshore Ballroom, 9:00 am-5:00 pm.
For more information, please contact:

Leo J. Shea III, Ph.D.
Neuropsychological Evaluation
& Treatment Services, P.C.
212-951-4545
www.leoshea.com

Call for Abstracts
The abstract submission deadline for Boston 2019: Chronic Disease = Chronic Infections? is May 30, 2019. For information on submitting an abstract for this year’s annual meeting, please visit  the Boston 2019 Conference page at www.ilads.org and select “Call for Abstracts.”
Lyme Innovation

Round Table

CODE has published its Lyme Innovation Roundtable Summary Report, which addresses the need for collaboration, coordination, and trust between stakeholders in order to effectively treat Lyme and other tick-borne diseases.
Click here to read the full report:

Sun Prairie Woman Warns of Lyme Disease’s Lingering Effects

Woman warns of Lyme disease’s lingering effects

SUN PRAIRIE, Wis. – As Wisconsin enters peak tick season, a Sun Prairie woman is sharing her story battling Lyme disease, saying there’s more to it than you might think.

“First of all, I am a plant freak. I love them,” Alicia Cashman said. “I used to be outdoors all the time.”

Now, Cashman brings the outdoors indoors.

“Now I look at the outdoors like you were a soldier in Vietnam and there’s landmines,” she said. “Where’s the landmine? I don’t know.”

Cashman’s landmines are a bit smaller. She’s always on the lookout for ticks after she and her husband began having symptom after unexplained symptom about 12 years ago.

“Red, hot to the touch, I developed a fever. I started seeing flashing lights,” she said. “All of a sudden your life just goes to pot, and you can’t figure out why.”

Her husband developed anxiety and severe insomnia. In both cases, Cashman said it all came back to Lyme disease.

“Lyme is not what you think it is,” she said. “It’s way more complicated and complex.”

“We do know if people aren’t treated early, sometimes they go on to have lifelong symptoms,” said Susan Paskewtiz, a professor and chair of the University of Wisconsin Madison’s entomology department.

Paskewtiz said the initial infection of Lyme disease can change people’s bodies.

Perhaps you’re forever altered as a result,” she said, adding that it can include heart issues, neurological symptoms and migrating joint pain, all things Cashman experienced. But early treatment can stop that, and that starts with early detection.

According to Paskewtiz, Wisconsin ranks among the top states for diseases transmitted by ticks.

“We have a lot of deer ticks here,” she said. “We have some places here where we’ve collected more ticks than recorded in the country, that’s very focal, a couple locations like that, but we’re high.”

Officials are already warning of ticks this year, and the city of Madison has seen the number of deer ticks rise significantly this month, according to a recent release.

Paskewitz said not everyone gets the characteristic bulls-eye type mark indicating Lyme disease, so flu-like symptoms including muscle aches and a fever can be other signs.

She said while there are usually about 3,000 to 4,000 reports of Lyme disease in the state a year, cases are likely under-reported, and she estimates the real number to be 10 times that.

Paskewtiz said there are two important things Wisconsin residents should know this year. Ticks can be as small as a freckle and found in places you might not expect.

“Usually, we recommend to people lawns are a pretty safe place,” she said, “but we’re finding them in those locations, as well.”

Cashman can still visit her plants outdoors, it just takes a bit more work. She gears up, wearing light-colored, protective clothing, and chemically treats both her clothes and yard.

“I’m doing great, but it’s taken 4 1/2 years of treatment, and I literally went from, ‘I want to die,’ to ‘I have my brain back,’” she said. “Where before, I didn’t think about it, now it never leaves my mind.”

She hopes others will keep the disease in the back of theirs.

“You can’t afford to be lazy,” she said.

Cashman now leads the Madison Area Lyme Support Group, which is presenting a free viewing of the documentary “Under Our Skin” Saturday at the East Madison Police Station May 4. She recommends those diagnosed with the disease check out the nonprofit organization the Wisconsin Lyme Network.

The Centers for Disease Control and Prevention describes patients with symptoms after the treatment of Lyme disease as having post-treatment Lyme disease syndrome, and the organization writes its cause isn’t known.

The CDC said alternative treatments for Lyme disease have been associated with complications, and its best to use care and consult a physician.

________________

**Comment**

So thankful Dr. Paskewtiz filled in many of the points I wasn’t able to make. Although I shared how all my initial symptoms were gynecological and that I believe Lyme to be a STD as well as spread congenitally, they opted to leave that intel out.  https://madisonarealymesupportgroup.com/2017/02/24/pcos-lyme-my-story/

https://madisonarealymesupportgroup.com/2018/06/19/33-years-of-documentation-of-maternal-child-transmission-of-lyme-disease-and-congenital-lyme-borreliosis-a-review/

Unfortunately, the statement that a tick’s gut is a literal garbage can full of pathogens of which Lyme is only one of many, also was omitted.  https://madisonarealymesupportgroup.com/2018/10/30/study-shows-lyme-msids-patients-infected-with-many-pathogens-and-explains-why-we-are-so-sick/

We are slowly pushing this thing up the hill.  Just a few short years ago, nothing would have been said about the “lingering symptoms,” so that’s a huge improvement, but of course there’s much, much more to be done.  https://madisonarealymesupportgroup.com/2019/02/25/medical-stalemate-what-causes-continuing-symptoms-after-lyme-treatment/  BTW: Ahern states it’s 60% that have lingering symptoms – so it’s a significant subset of patients.

Regarding PTLDS: https://madisonarealymesupportgroup.com/2019/04/05/post-treatment-lyme-disease-syndrome-a-review-of-its-origin-its-consequences-in-the-socio-economic-sphere/  Excerpt: 

It is demonstrated that the chronic symptoms of Lyme disease are a reality, referred to as: Chronic Lyme disease (CLD); or Syndrome- Post-treatment of Lyme disease (PTLDS).

As we said at the beginning, the CDC does not recognize the term Chronic Lyme Disease (CLD) because it is confusing[1].

With respect to this, we conclude that the CDC is wrong because data demonstrated that months or years after adequate treatments with antibiotics, patients can have the same or worse symptoms, which gives truth to the term: chronic Lyme disease (CLD).

I told the reporter that had I followed the advice of the CDC I’d be dead by now. The tiny but overriding statement at the end of the article about “alternative treatments for Lyme disease have been associated with complications,” is a complete “Catch-22,” because anything but essentially 21 days of doxycycline is considered alternative to the CDC and that’s a huge problem.  And by “consulting a physician,” that’s also setting people up for failure as there are only a handful of doctors in the entire state of Wisconsin who are properly trained and treat this monster appropriately. The same can be said of other states as well.

Sigh……well, there’s always next year!