Archive for the ‘Lyme’ Category

‘Like the Devil Was Inside Me,” Says Comedian of Lyme Disease

https://www.lymedisease.org/touched-by-lyme-like-the-devil-was-inside-me-says-comedian-of-lyme-disease/

Dorothy Kupcha Leland

12 JUN 2020

TOUCHED BY LYME: “Like the devil was inside me,” says comedian of Lyme disease

Tori Piskin

Back when she was in college, actor and comedian Tori Piskin started having blurry vision and debilitating fatigue.

She says it felt like she was living in the movie The Exorcist.

“Like the devil was inside of me—something was off.”

Eventually, she was diagnosed and treated for Lyme disease, but many symptoms lingered.

“Fatigue is the biggest symptom I still deal with…It literally feels like rocks are on you.”

Piskin talks about her Lyme disease experience in a video series called “Diagnosis Diaries.” The YouTube series is sponsored by Bustle, an online women’s magazine.

Watch Piskin’s diary entry here:

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.

Category:

Activism, Lyme

Live Tonight: Lyme Disease & Chronic Pain Webinar

Live Webinar: Lyme Disease & Chronic Pain – Dr. Bill Rawls

erasing pain, hand written word on blackboard being erased concept

The list of symptoms that can come with chronic Lyme disease is long and varied, but pain — in the joints, muscles, nerves, neck, eyes, even teeth — seems to be a common denominator.

Why are Lyme sufferers so prone to chronic pain, and what can you do to find fast and lasting relief?

Join a live webinar with Dr. Bill Rawls, author of the bestselling book Unlocking Lyme, who knows firsthand what it’s like to live with chronic Lyme disease and related aches and pains. He’ll shed new light on the underlying forces that drive persistent pain, and share natural ways to resolve them so you’re not just managing discomfort, but overcoming it.

PLUS: Don’t miss an exclusive gift for webinar attendees, and have your questions ready for a LIVE Q&A on Lyme and chronic pain with Dr. Rawls.

Watch June 17th, 8pm EDT

Lyme & Chronic Pain – Live Webinar

  • The causes and telltale symptoms of different types of pain
  • How Borrelia burgdorferi and common Lyme coinfections like Mycoplasma, Bartonella, and Babesia contribute to pain
  • The best herbs and natural remedies for immediate and long-term relief
  • Additional diet and lifestyle tips to help keep symptoms at bay 
  • Numerous insights during the live Q&A with Dr. Rawls 

RESERVE MY SEAT »

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For more:

Category:

Herbs, Lyme, Pain Management, Supplements

Borrelia Miyamotoi Infection in a Highly Endemic Area of Lyme Disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7260789/

Published online 2020 May 30. doi: 10.1186/s12941-020-00364-0
PMCID: PMC7260789
PMID: 32473652

Presence of Borrelia miyamotoi infection in a highly endemic area of Lyme disease

Luis A. Marcos,corresponding author1,2 Kalie Smith,1 Kelsey Reardon,1 Fredric Weinbaum,3 and Eric D. Spitzer4

Abstract

A series of cases in the Northeast of the US during 2013–2015 described a new Borrelia species, Borrelia miyamotoi, which is transmitted by the same tick species that transmits Lyme disease and causes a relapsing fever-like illness. The geographic expansion of B. miyamotoi in the US also extends to other Lyme endemic areas such as the Midwestern US. Co-infections with other tick borne diseases (TBD) may contribute to the severity of the disease. On Long Island, NY, 3–5% of ticks are infected by B. miyamotoi, but little is known about the frequency of B. miyamotoi infections in humans in this particular region. The aim of this study was to perform a chart review in all patients diagnosed with B. miyamotoi infection in Stony Brook Medicine (SBM) system to describe the clinical and epidemiological features of B. miyamotoi infection in Suffolk County, NY. In a 5 year time period (2013–2017), a total of 28 cases were positive for either IgG EIA (n = 19) or PCR (n = 9).

All 9 PCR-positive cases (median age: 67; range: 22–90 years) had clinical findings suggestive of acute or relapsing infection.

All these patients were thought to have a TBD, prompting the healthcare provider to order the TBD panel which includes a B. miyamotoi PCR test.

In conclusion, B. miyamotoi infection should be considered in the differential diagnosis for flu-like syndromes during the summer after a deer tick bite and to prevent labeling a case with Lyme disease.

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**Comment**

https://madisonarealymesupportgroup.com/2018/09/04/borrelia-miyamotoi-in-immunocompetent-patient/

Dr. Cameron states:  “Until now, there have been no treatment guidelines for B. miyamotoi and regimes have been empirically based on the treatment for Lyme disease. ‘The antimicrobial susceptibility of B. miyamotoi has not yet been elucidated, due to difficulties with cultivation of B. miyamotoi spirochetes in vitro,’ according to Koetsveld.  http://danielcameronmd.com/best-antibiotics-treat-borrelia-miyamotoi/  The study authors demonstrated that B. miyamotoi is susceptible to doxycycline, azithromycin, and ceftriaxone but resistant to amoxicillin in vitro. The next step would be to show whether these drugs work in patients.”

For more:  https://madisonarealymesupportgroup.com/category/borrelia-miyamotoi-relapsing-fever-group/http://danielcameronmd.com/dont-count-on-a-relapsing-fever-to-diagnose-borrelia-miyamotoi/
“You might assume a patient infected with Borrelia miyamotoi, a relapsing fever spirochete, to present with a relapsing fever. However, your assumption would be wrong 48 out of 50 times, according to a case series published in the Annals of Internal Medicine. [1] The authors found that only 2 out of 50 patients infected with the relapsing spirochete B. miyamotoi actually presented with a relapsing fever. [1]….The individuals exhibited symptoms similar to those found in other tick-borne illnesses.
The majority presented with headaches, myalgias, arthralgias, and malaise/fatigue. ‘More than 50% were suspected of having sepsis, and 24% required hospitalization,’ states Molloy. [1]…..’Serologic testing using the rGlpQ EIA seems insensitive in diagnosing acute BMD infection given that it was positive for IgG or IgM in only 16% of the case patient samples at the time of clinical presentation,’ states Molloy. The rGlpQ was positive after the fact in 86% of the patients during convalescence. [1]….Elevated liver enzyme levels, neutropenia, and thrombocytopenia were common in 75%, 60% and 51% respectively.
‘Borrelia miyamotoi disease may be clinically similar to or be confused with human anaplasmosis,’ according to Molloy….B. miyamotoi has emerged as a leading cause of hard tick-transmitted infections but lacks a clear diagnostic criteria. According to Molloy, “Infection with B. miyamotoi is the fifth recognized Ixodes-transmitted infection in the northeastern United States and should be part of the differential diagnosis of febrile patientsfrom areas where deer tick–transmitted infections are endemic.’”

Category:

Borrelia Miyamotoi (Relapsing Fever Group), Lyme, research

Next TBDWG Meeting July 8: Make Sure To Pop Popcorn

https://www.lymedisease.org/next-online-meeting-of-tbd-working-group-is-july-8/

Next online meeting of TBD Working Group is July 8

TBDWG in PA

The next online meeting of the federal Tick-Borne Disease Working Group will be July 8, from 9:00 a.m. to 5:30 p.m. Eastern Time.

The following information is from the Department of Health and Human Services website:

For this meeting, the TBDWG will review the draft 2020 report to the HHS Secretary and Congress and review and approve graphics and images for the report.

The 2020 report will address ongoing tick-borne disease research, including research related to causes, prevention, treatment, surveillance, diagnosis, diagnostics, and interventions for individuals with tick-borne diseases; advances made pursuant to such research; federal activities related to tick-borne diseases; and gaps in tick-borne disease research.

Please register  for the virtual meeting. After registering, you will receive an email confirmation with a personalized link to access the webcast on July 8.

Public Comment – Information and Instructions

The public will have an opportunity to present their views to the Working Group during the meeting’s public comment session or by submitting their views in writing. Comments should be pertinent to the meeting discussion.

Verbal Comments:

  • Requests to provide verbal public comment must be submitted via email by midnight Wednesday, June 24, ET to tickbornedisease@hhs.gov. In the email Subject line please enter: Verbal Public Comment – July 8 Meeting. You will be provided a call-in number and time to call.
  • A total of 60 minutes has been set aside for verbal comments on Wednesday, July 8. Each person will be limited to 3 minutes in order to accommodate as many speakers as possible. If more requests are received than can be accommodated, speakers will be randomly selected.
  • Your remarks will be heard over a live webcast and will become part of the archived recording and meeting summary that will be posted on this website.

Written comments (posted on this webpage and accessible to the public):

  • Written public comments must be submitted via email by midnight Wednesday, June 24, ETto tickbornedisease@hhs.gov. In the email Subject line please enter: Written Public Comment – July 8 Meeting.
  • When you submit your written comment, please include a statement letting us know how you would like to be identified with your comment. You may choose to use your name or to be anonymous. You may also list your city and/or state. If you are providing comments on behalf of an organization, please include the name of the organization. We cannot post your comment until you let us know how you would like to be identified.
  • Comments should either be provided in the body of your email, or in an attachment in Word format and equivalent to no more than 4 pages in Calibri or Times New Roman, 11 point font. Text that exceeds the 4 pages will be deleted.
  • We do not post graphics, images, text boxes, or tables. If included with your comment, we will not be able to retain them.
  • We can only create hyperlinks to “.gov” sites (local, state, or federal). For all other reference sites, please insert the full URL (e.g., http://learn.genetics.utah.edu/content/epigenetics).
  • We are also unable to include attachments as supporting documentation to your written comments.

Click here for more information about the TBD Working Group.

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**Comment**

This should prove interesting because at the last meeting the subcommittee offered several recommendations, one of which was about treatment guidelines. A true fiasco ensued, over guess what?  Yep – chronic Lyme.

 “IF the CDC posts any Lyme treatment guidelines, that they include guidelines on persistent Lyme disease.

The recommendation regarding persistent Lyme disease was moved and seconded. Then, for unstated reasons, five panel members abstained from voting. The vote was announced as five abstaining, five yes votes and three no votes.”

tbdwg vote on persistent lyme

https://madisonarealymesupportgroup.com/2020/05/11/persistent-lyme-a-sticking-point-for-tbd-working-group/

Excerpt:

Remarks made after the vote made it clear that the abstainers felt they had defeated the measure, because “yes” votes didn’t comprise a majority of panel members. But, oops, guess what? Abstentions don’t count one way or the other. So, the recommendation passed, 5-3.

As that reality sank in, pandemonium broke out. Panelist Scott Commins stoutly announced that he wanted to change his abstaining vote to “no.” He was told that Robert’s Rules of Order don’t allow you to change your vote after the fact.

Things then got very bizarre very fast, with many people talking at once. Some wanted to vote on the original question again. Others didn’t. Some wanted to re-open discussion, others didn’t. It was confusing to the listener at home.

However, the five abstainers sure gave the impression they had been trying to game the system—to gain a “no” vote without having to publicly own up to it. When that ploy didn’t work, they scrambled to recoup their original objective— to deep-six the proposal regarding persistent Lyme disease.

The upcoming meeting should be entertaining.

Unfortunately, lives are at stake. We really don’t want entertainment – we need answers.

For more: https://madisonarealymesupportgroup.com/2020/04/25/tbdwg-public-comment-lyme-advocate-carl-tuttle/

https://madisonarealymesupportgroup.com/2020/05/27/letter-to-cdc-dr-beard-why-isnt-direct-detection-of-lyme-disease-a-priority/

 

 

Category:

Activism, Lyme

Lyme Community Has Lost a Hero & Friend: Dr. Neil Spector

https://www.lymedisease.org/dr-neil-spector-has-died/

The Lyme community has lost a hero and a friend: Dr. Neil Spector

June 15, 2020

We have just heard the heartbreaking news that Dr. Neil Spector has died.

Many in the Lyme community know him as the author of “Gone in a Heartbeat: A Physician’s Search for True Healing.” In it, he tells the story of how undiagnosed Lyme disease caused so much damage he needed a heart transplant.

That book came out in 2015. But his contributions to the Lyme community did not stop there. After years of working as a cancer researcher, more recently he turned his considerable skills to looking for answers to Lyme and other tick-borne illnesses.

He was also very generous about speaking to Lyme patients and physicians.

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For more on Dr. Spector:

 

 

Category:

Activism, Lyme