Archive for the ‘Lyme’ Category

Rhode Island Bill Would Require Insurance Coverage for Lyme Treatment

https://www.thenewportbuzz.com/this-week-at-the-rhode-island-general-assembly

THIS WEEK AT THE RHODE ISLAND GENERAL ASSEMBLY

CHRISTIAN WINTHROP ·
Excerpt from Article:  
Vella-Wilkinson bill would mandate coverage for Lyme, uterine fibroids

The House Committee on Corporations heard testimony this week on legislation introduced by Rep. Camille F.J. Vella-Wilkinson (D-Dist. 21, Warwick) that would provide health care coverage for treatments for Lyme disease and uterine fibroids.

The first bill (2021-H 5897) would require insurers to provide coverage for any prescription drug treatment for Lyme disease. The second bill (2021-H 5898) provides health care coverage for laparoscopic removal of uterine fibroids, including intraoperative ultrasound guidance and monitoring and radiofrequency ablation.

“Because the CDC states that Lyme disease can be treated with 30 days of antibiotics, the majority of insurance companies do not recognize chronic Lyme disease as a legitimate illness and will not pay for long-term treatment,” Representative Vella-Wilkinson told the committee.

“It is clear that we need effective, cost-effective and compassionate management of these patients to improve their outcomes even if we don’t know what to call the disease.”

Lyme disease imposes a significant economic burden, Rep. Vella-Wilkinson said.

“Patients with early Lyme disease incurred $3,798 total direct medical costs associated with it. With late or chronic Lyme disease, the total annual cost per person is about $25,000.”  Source

Category:

Activism, Lyme

Lyme Disease Can Impact Your Vision’s “Contrast Sensitivity”

https://www.lymedisease.org/lyme-vision-contrast-sensitivity/

By Lonnie Marcum

March 30, 2021

LYME SCI: Lyme disease can impact your vision’s “contrast sensitivity”

how Lyme affects eyes

Lyme disease can affect the eyes. Ocular symptoms including light sensitivity, pink eye, and swelling around the eyes have been described in up to 11% of patients with acute Lyme infections.

A new study from the Lyme Disease Research Center at Johns Hopkins School of Medicine shows Lyme disease can impact the eyes’ ability to distinguish the foreground from the background. This is called contrast sensitivity, or CS.

Driving at night or under conditions of low light, fog or glare are good examples of activities that require CS.

Past research has shown that even with prompt early treatment for Lyme disease, 10-20% of patients continue to have lingering symptoms.

The most prominent of these chronic symptoms are fatigue, widespread musculoskeletal pain, and cognitive difficulties. Patients also report a wide range of neurologic, sleep, ocular, mood, and other symptoms.

When Lyme treatment is delayed, the risk for developing chronic symptoms is much higher. In the MyLymeData project, 70% of participants were not diagnosed until six months or more following the onset of their symptoms.

Delayed treatment allows the bacteria to disseminate throughout the body, leading to conditions such as  neuroborreliosis, Lyme arthritis or Lyme carditis.

symptoms

The Hopkins CS study compared 214 patients with persisting symptoms of Lyme disease to 60 healthy controls. The researchers found that CS impairment in patients with persistent symptoms in Lyme disease is associated with higher signs of cognitive and neurologic impairment and may be a marker of illness severity.

In fact, in this study, patients with CS impairment were 2.6 times more likely to be in the group with persisting symptoms following treatment for Lyme disease. (The researchers labeled this category as post-treatment Lyme disease–PTLD.)

The researchers point out that in multiple sclerosis, loss of CS predicts the onset of cognitive impairment and dementia.

The recent study does not speculate about the specific reason for CS impairment in Lyme patients. Instead, researchers only suggest that a detailed ophthalmic examination and further study should look at retinal and optic nerve changes in these patients.

The authors “hypothesized that patients with PTLD would have more CS impairment than controls and that this impairment would be associated with neurologic and cognitive abnormalities.”

Since the CDC now estimates that 475,000 people will be diagnosed with Lyme disease every year, it would be good for eye doctors to be aware of the link between CS and Lyme.

You can help spread the word by sharing this article with your eye doctor at your next visit.

LymeSci is written by Lonnie Marcum, a Licensed Physical Therapist and mother of a daughter with Lyme. In 2019-2020, she served on a subcommittee of the federal Tick-Borne Disease Working Group. Follow her on Twitter: @LonnieRhea  Email her at: lmarcum@lymedisease.org .

References

Rebman AW, Yang T, Aucott JN, Mihm EA, West SK. (2021) Contrast sensitivity loss in patients with posttreatment lyme disease. Trans Vis Sci Tech. DOI: https://doi.org/10.1167/tvst.10.3.27

Related Posts:

  1. LYMEPOLICYWONK: Dr. Fallon Sets the Record Straight—Part 2. Differences Matter.
  2. LYMEPOLICYWONK: LymeDisease.org launches new patient survey on the Impact and Cost of Lyme Disease.
  3. LYME SCI: Nerve damage shown in patients with chronic Lyme symptoms
  4. LYMEPOLICYWONK: The Economic Impact and Burden of Lyme Disease—A Wake Up Call to Policy Makers
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For more:

Category:

Eye Issues, Lyme, research

Columbia Establishes Treatment Center, Clinical Trials Network for Lyme Disease

https://www.eurekalert.org/pub_releases/2021-03/cuim-cet033021.php

Columbia establishes treatment center, clinical trials network for Lyme disease

COLUMBIA UNIVERSITY IRVING MEDICAL CENTER

Grant Announcement

NEW YORK, NY (March 30, 2021)–A new center that will provide specialized care for patients with Lyme disease and other tick-borne diseases will begin seeing patients this summer at Columbia University’s Vagelos College of Physicians and Surgeons.

The Cohen Center for Health and Recovery from Tick-Borne Diseases, supported by a $16 million gift from the Steven & Alexandra Cohen Foundation, will be the first in New York City to offer dedicated treatment for people with Lyme and related diseases.

The foundation’s gift will also fund a national clinical trials network that will focus on identifying more effective treatments for patients with Lyme and tick-borne diseases.

“There is a growing need for evidence-based treatments for patients with Lyme and other tick-borne diseases,” said Anil Rustgi, MD, interim executive vice president and Dean of the Faculties of Health Sciences and Medicine at Vagelos College of Physicians and Surgeons and Columbia University Irving Medical Center. “This generous gift from the Cohen Foundation will allow us to build on our faculty’s expertise in Lyme and tick-borne disease patient care and research, providing access to comprehensive, coordinated treatment.”

“We know firsthand the devastation that Lyme and tickborne diseases can cause, and we are thrilled to support this innovative center and clinical trials network to help bring treatments and hope to patients and their families,” said Alex Cohen, President, Steven & Alexandra Cohen Foundation.

Growing Need for Lyme Disease Experts and Research

The estimated incidence of Lyme disease in the United States has been steadily rising, to approximately 476,000 new cases (including individuals who are newly diagnosed or treated for the disease) annually. Despite antibiotic treatment, approximately 10-20% of these new infections will lead to distressing and potentially disabling symptoms, such as severe fatigue, joint and muscle pain, neurologic symptoms, and cognitive problems that may last for months or years.

There is limited expertise in treating the acute and chronic aspects of tick-borne diseases, making it difficult for patients to find high-quality, specialized care. In addition, little research has been done to determine which treatments are most effective for persistent symptoms, which can interfere with daily activities and work.

“Like COVID-19 ‘long-haulers,’ many people with tick-borne diseases were completely well until their infection precipitated a cascade of chronic, multi-system effects,” says Brian Fallon, MD, director of the Cohen Center for Health and Recovery from Tick-Borne Diseases. “A comprehensive evaluation takes time. In addition, the cost of care for patients with chronic symptoms can be prohibitive, requiring multiple visits to physicians who may not be aware of the latest research on tick-borne illnesses. Our center will be the first to address all of these issues by offering access to affordable care with experienced physicians while at the same time integrating research and physician training into our clinical model.“

Fallon plans to hire additional clinicians to begin seeing patients via telemedicine in July. New clinicians will include family, integrative, and behavioral medicine specialists. Patients with acute or chronic symptoms are expected to be able to see the Cohen Center team this fall in the center’s new clinical space in the Neurological Institute.

“Many patients with chronic symptoms related to tickborne illness are misdiagnosed with conditions such as depression, chronic fatigue syndrome, or even psychosomatic disorder,” says Shannon Delaney, MD, co-director of the Cohen Center. “Children infected with a tick-borne illness may have dramatic and disabling neurologic or psychiatric symptoms that seem to occur overnight.”

Cohen Center patients will be invited to enroll in clinical trials, as well as brain imaging studies and neuropsychiatric studies. Studies that identify biologic markers can help determine treatment approaches.

The Cohen Center will provide training for family medicine fellows and medical students on how to evaluate and treat patients with tick-borne diseases.

“Our educational component will allow us to create a pipeline of family medicine and primary care physicians with experience in caring for patients with the unique and varied set of symptoms associated with tick-borne diseases,” says Krishna Desai, MD, assistant professor of medicine at Columbia University Vagelos College of Physicians and Surgeons and director of family and integrative medicine at the center.

First Clinical Trials Network for Lyme and Tick-borne Diseases

The Cohen gift expands Lyme and tick-borne diseases research by establishing the first clinical trials network for multi-site clinical trials and pilot studies to assess treatments. Columbia will be the coordinating site for the trials. Experts at Johns Hopkins University School of Medicine and Children’s National Hospital are key members of the national network.

Academics, community physicians, and the general public will be invited annually to submit treatment study ideas to the clinical trials network for consideration.

“There’s a critical need for effective therapies for patients with Lyme and tick-borne diseases,” says Fallon. “The clinical trials network will be a powerful engine to drive high-quality research in tick-borne diseases, including large-scale clinical trials and potentially transformational early stage research.”

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More information

Brian Fallon, MD, MPH, is professor of clinical psychiatry at Columbia University Vagelos College of Physicians and Surgeons and a physician-scientist with expertise in disorders intersecting medicine, neurology, and psychiatry. He is co-author of “Conquering Lyme Disease” with Dr. Jenifer Sotsky (Columbia University Press, 2017). He is also director of the Lyme and Tick-Borne Diseases Research Center at Columbia University.

Shannon Delaney, MD, is assistant professor of psychiatry at Columbia University Vagelos College of Physicians and Surgeons and an expert in child and adult neuropsychiatry and infection-triggered neuropsychiatric disorders.

Krishna Desai, MD, is assistant professor of medicine at Columbia University Vagelos College of Physicians and Surgeons.

The clinical trials network collaborating investigators include John Aucott, MD, Director of the Johns Hopkins Lyme Disease Research Center, in Baltimore, Maryland, and Roberta DeBiasi, MD, Chief, Division of Pediatric Infectious Diseases, Children’s National Hospital in Washington, D.C.

Columbia University Irving Medical Center provides international leadership in basic, preclinical, and clinical research; medical and health sciences education; and patient care. The medical center trains future leaders and includes the dedicated work of many physicians, scientists, public health professionals, dentists, and nurses at the Vagelos College of Physicians and Surgeons, the Mailman School of Public Health, the College of Dental Medicine, the School of Nursing, the biomedical departments of the Graduate School of Arts and Sciences, and allied research centers and institutions. Columbia University Irving Medical Center is home to the largest medical research enterprise in New York City and State and one of the largest faculty medical practices in the Northeast. For more information, visit cuimc.columbia.edu or columbiadoctors.org.

About the Steven and Alexandra Cohen Foundation

The Steven & Alexandra Cohen Foundation is committed to inspiring philanthropy and community service by creating awareness, offering guidance, and leading by example to show the world what giving can do. The Foundation’s grants support nonprofit organizations based in the United States that either help people in need or solve complex problems. The Foundation also spearheads grassroots campaigns to encourage others to give. For more information, visit http://www.steveandalex.org.

Disclaimer: AAAS and EurekAlert! are not responsible for the accuracy of news releases posted to EurekAlert! by contributing institutions or for the use of any information through the EurekAlert system.

Category:

Activism, Lyme

Lyme Causes “False Brain Tumor” in Child

https://danielcameronmd.com/lyme-disease-false-brain-tumor-child/  Podcast here

LYME DISEASE CAUSES “FALSE BRAIN TUMOR” IN YOUNG CHILD

brain-lyme-disease

Welcome to another Inside Lyme Podcast. I am your host Dr. Daniel Cameron. I find that the best way to get to know Lyme disease is through reviewing actual cases. In this episode, I’ll be discussing a case involving a 9-year-old boy with with a pseudotumor cerebri due to Lyme disease.

By

Ezequiel and colleagues first described this case in the British Medical Journal Case Reports in 2017.¹

Pseudotumor cerebri means “false brain tumor” because its symptoms are similar to those caused by brain tumors. It’s also known as idiopathic intracranial hypertension.

Symptoms mimic brain tumor 

The boy was admitted to the hospital with “daily pulsatile frontotemporal headache, pallor, photophobia and phonophobia, without night awakening, vomiting or visual changes,” the authors write. (Photophobia is sensitivity to light. Phonophobia is fear or aversion to sound.)

The doctors found papilloedema, which is swelling of the optic disc but no neck pain. A CT scan of the patient’s head was normal. He had an increased opening pressure in his spinal tap. In other words, the fluid removed from his spinal tap was under higher pressure.

Pseudotumor cerebri is a condition caused by elevated cerebrospinal fluid pressure in the brain.

The boy was diagnosed with a pseudotumor. Pseudotumor cerebri is a condition caused by elevated cerebrospinal fluid pressure in the brain. Symptoms can mimic a brain tumor, but in fact are due to intracranial pressure in the head.

He was prescribed acetazolamide while undergoing further evaluation. (Acetazolamide is a diuretic and carbonic anhydrase inhibitor medication that is used to reduce eye pressure.)

The boy was tested for a wide range of bacterial and viral infections, all of which were negative.

Treatment for neuroborreliosis 

He lived in Portugal and because he had visited the countryside prior to developing symptoms, he was tested for Lyme disease. A Western blot and spinal tap revealed he was positive.

The boy was diagnosed with Lyme disease and treated with a 21-day course of intravenous ceftriaxone. He recovered completely.

The authors point out, “CSF [cerebral spinal fluid] changes are not common, so in their presence, it is compulsory to investigate an infectious origin, as happened in this case, as the intracranial hypertension might be the only symptom of a central nervous system infection.”

Furthermore, “Borrelia infections should be actively investigated in children with central nervous system disease even in non-endemic areas.”

The following questions are addressed in this Podcast:

1. What is Pseudotumor cerebri and why is it referred to as ‘false brain tumor?’
2. What are the causes and how is it diagnosed?
3. How often does pseudotumor cerebri occur in Lyme disease?
4. Can it be the only manifestation of Lyme disease?
5. Can you discuss the boy’s initial treatment?
6. What are your thoughts on the treatment he received for Lyme disease?

    Thanks for listening to another Inside Lyme Podcast. You can read more about these cases in my show notes and on my website @DanielCameronMD.com. As always, it is your likes, comments, reviews, and shares that help spread the word about Lyme disease. Until next time on Inside Lyme.

Please remember that the advice given is general and not intended as specific advice as to any particular patient. If you require specific advice, then please seek that advice from an experienced professional.

Inside Lyme Podcast Series

This Inside Lyme case series will be discussed on my Facebook 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. Ezequiel M, Teixeira AT, Brito MJ, Luis C. Pseudotumor cerebri as the presentation of Lyme disease in a non-endemic area. BMJ Case Rep. 2018;2018.

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I pray this treatment was enough and that Lyme was the only culprit.

For more:

Category:

Lyme, research

Current Serology – No Better Than A Coin Toss

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

Current serology is no better than a coin toss

MAR 31, 2021 — 

Please see the letter below addressed to the Chair of the NH Lyme Disease Study Commission in reference to a presentation from our last Zoom meeting.

You can hear/see my arguments at 1:01 in the recorded YouTube video link below.

———- Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: William Marsh <wmarshmd@gmail.com> CHAIR
Cc: All members of the study group
Date: 03/31/2021 8:59 AM
Subject: Topic for discussion at our next meeting (Dr. Martin’s Presentation)

I would like to add the following letter of concern as a topic for discussion at our next meeting and have copied all committee members so they can review the document prior to the meeting. 

Please reserve any discussion of these documents until our next scheduled Zoom meeting.

To members of the Lyme Study Commission,

Dear Rep Marsh,
I have some serious concerns regarding Dr. Martin’s informative presentation last Friday.

In reference to the 2013 C6 Elisa paper from Dr. Wormser, [1] this test is not widely used here in the US for the detection of Borrelia infections. When performing a search on the Quest Diagnostics website, I could not find the C6 Elisa listed as an option for Lyme disease.

Furthermore, test performance from that 2013 Wormser paper and 2018 pegalajar-jurado et al publication [2] was derived through the use of serum samples from patients who had the positive marker for Lyme; erythema migrans (bulls-eye rash) so testing results for the newer serology were positive because they were already positive. There was no performance data for those who never developed the bulls-eye rash. Once again this is misleading to the reader and highly inaccurate in real-world application. (what front line physicians are experiencing) Maine Department of Health is reporting incidence of rash at only 50%. So, half of the patient population is not being represented in these studies. That is a serious concern.
 
To my knowledge, the Modified Two-Tiered Testing Algorithm (MTTTA) is not in use outside of Dr. Martin’s lab and irrelevant to our study commission at this time so any performance numbers offered by Dr. Martin are meaningless. Until such time that these newer tests are fully implemented (if ever) performance characteristics should not be acknowledged or posted in the minutes of the Lyme Study Commission.

Although current testing methods are evolving, we are still using the conventional WCS ELISA–immunoblot-based 2-tier testing algorithm. Dr. Durand (ILADS physician) and I have provided documentation supporting the fact that current serology is no better than a coin toss and this fact must be shared with the public along with the fact that humans do not produce antibodies for 4-6 weeks after a tick bite.

Here are the missing disclaimers:

1. “Health-care providers are reminded that a diagnosis of Lyme disease should be made after evaluation of a patient’s clinical presentation and risk for exposure to infected ticks, and, if indicated, after the use of validated laboratory tests.

2. “This surveillance case definition (two of three IgM and Five of ten IgG bands) was developed for national reporting of Lyme disease; it is not intended to be used in clinical diagnosis”

Respectfully submitted,

Carl Tuttle
Hudson, NH

References

1. Single-tier testing with the C6 peptide ELISA kit compared with two-tier testing for Lyme disease
 https://demystifyingmedicine.od.nih.gov/dm13/2013-03-19/dmid-v75-y2013-p9.pdf

2. Evaluation of Modified Two-Tiered Testing Algorithms for Lyme Disease Laboratory Diagnosis Using Well-Characterized Serum Samples
 https://jcm.asm.org/content/56/8/e01943-17

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For more:

There has been a concerted effort by ‘authoritie’s against direct testing. 

The simple reason for this is our public health ‘authorities’ have patents on Lyme testing.

They also want us to take their controversial Lyme vaccines which would only work if Lyme disease does not cause chronic illness – hence the denial of persistent infection.  Our public authorities also have conflicts of interests regarding these vaccines.

The CDC is not to be trusted at all.  

We need to stop working with these agencies and raising money for their flawed, biased science that continues to abuse and neglect sick patients.

 

Category:

Activism, Lyme, Testing