Archive for the ‘Lyme’ Category

Medical Gaslighting and Lyme Disease: The Patient Experience

healthcare-12-00078

Medical Gaslighting and Lyme Disease: The Patient Experience

Jennifer L. Fagen 1, *, Jeremy A. Shelton 2 and Jenna Luché-Thayer 3

Abstract:

Even though there are approximately half a million new cases of Lyme disease in the US annually, according to the CDC, it is often undiagnosed or misdiagnosed, which can result in a chronic, multisystemic condition. Lyme disease is a recognized public health threat and is a designated “notifiable disease”. As such, Lyme disease is mandated to be reported by the CDC. Despite this, both acute and chronic Lyme disease (CLD) have been relegated to the category of “contested illnesses”, which can lead to medical gaslighting. By analyzing results from an online survey of respondents with Lyme disease (n = 986), we elucidate the lived experiences of people who have been pushed to the margins of the medical system by having their symptoms attributed to mental illness, anxiety, stress, and aging. Further, respondents have had their blood tests and erythema migrans (EM) rashes discounted and were told that CLD simply does not exist. As a result, a series of fruitless consultations often result in the delay of a correct diagnosis, which has deleterious consequences. This is the first study that addresses an extensive range of gaslighting techniques experienced by this patient population.

(See top link for entire paper)

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Category:

Activism, Lyme, Psychological Aspects, research, Uncategorized

Hygromycin A Moving to Human Trials

A NEW TREATMENT FOR LYME DISEASE

The path to discovery

In 2015, GLA funded a drug discovery program with Dr. Kim Lewis at Northeastern University, leading to the discovery of hygromycin A, an overlooked antibiotic from 1953. Fast forward to 2021, and Dr. Lewis’s lab revealed that hygromycin A is highly effective against Lyme bacteria and can potentially cure early Lyme disease and prevent chronic conditions.

Building upon this discovery, GLA proudly partnered with Dr. Lewis and Flightpath Biosciences, a biotechnology company. GLA Chief Scientific Officer Timothy Sellati, Ph.D., says, “Flightpath Biosciences will usher hygromycin A along the commercialization path, through clinical trials and FDA approval, ultimately reaching physicians.” Remarkably, not only does hygromycin A kill the Lyme bacteria in the test tube and in animal studies but unlike antibiotics such as doxycycline, it is unlikely to harm the ‘good’ bacteria in a patient’s intestines.

Today, GLA is excited to announce that hygromycin A (FP-100) is moving into the clinic in Q1 2024 for human clinical trials. CEO of Flightpath Biosciences, Matt Tindall, emphasizes, “This landmark achievement for Lyme patients could not have been reached without the kind and generous financial support of GLA and its community.” 

We eagerly anticipate progress and the road ahead, working together to bring hygromycin A (FP-100) into the hands of physicians.

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**Comment**

While not diminishing the potential importance of this, it’s use in preventing or treating persistent infections was not determined.  The subset of patients with chronic debilitating symptoms continues to be ignored.  

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Category:

Lyme, research, Treatment

Podcast: When Lyme Disease Leads to Low Sex Drive

https://www.lymedisease.org/lyme-disease-and-low-sex-drive/

PODCAST: When Lyme disease leads to low sex drive

Dec. 1, 2023

On a recent episode of the Lyme Boss podcast, host Heather Gray interviews Dr. Diane Mueller, a Colorado naturopath who specializes in sexual health and chronic illness.

Dr. Mueller has two different medical clinics:

One clinic, MyLymeDoc.com, is dedicated to helping those with Lyme, mold and other chronic infections/toxins that are driving symptoms such as fibro, headaches, hormonal imbalances, cognitive decline, chronic fatigue and more.

The other one, MyLibidoDoc.com, focuses on sexual well-being.

In this podcast episode, the two discuss sexual dysfunction in the context of chronic illness, the role of hormones and stress in sexual function, and tips for improving sexual health and wellness.

The Lyme Boss podcast is available via Apple, Amazon, Spotify and YouTube.

Or click below to listen.

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Category:

Activism, Lyme, Psychological Aspects

Western Massachusetts Woman Files Lawsuit Over Home Test For Lyme Disease

https://www.masslive.com/springfield/2023/10/western-massachusetts-woman-files-lawsuit-over-home-test-for-lyme-disease.html

Western Massachusetts woman files lawsuit over home test for Lyme disease

By Greta Jochem | gjochem@repub.com

SPRINGFIELD — A home test for Lyme disease from LetsGetChecked comes in a box with a message on the inside. “It’s good to know,” it reads.

A recently filed lawsuit has a different phrase for the test: “false advertising with tragic consequences.”

Filed in U.S. District court in Springfield, the class action lawsuit alleges that the LetsGetChecked test is not accurate, deceives customers and violates consumer protection law.

Moira Kerans, who lives in Dalton, and TruthCures, a Kansas-based nonprofit focused on Lyme disease, filed the suit in June against LetsGetChecked. It demands a jury trial and $5 million in damages.

The company ”strongly disputes” the lawsuit’s claims, LetsGetChecked spokesperson Emily Ryan said in an email. “As this matter is subject to legal proceedings, we shall be making no further comments,” Ryan said.  (See link for article)

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**Comment**

A few important points:

  • The article makes sure to state that the FDA has NOT approved any home tests for Lyme disease.  What it fails to mention is that the current “cleared” 2-tiered testing is also abysmal, yet because it’s “cleared” by the FDA, it is the only accepted test which has kept patients from proper diagnosis for decades. This testing problem goes back to the Second National Conference on Lyme Disease Testing in Dearborn, Michigan in 1994 and will continue to be a problem because the CDC recommends tests with the FDA stamp on it.  They purposely took out the most specific band for Lyme due to their vested interest in a Lyme vaccine but continue to blather about “reliability” when it’s not reliable at all!   It’s a sad state of affairs.
  • The FDA is guilty of stifling, banning, or censoring anything it considers a threat to its monopoly, including testing.  This out of control agency receives money from the very companies it regulates, and needs to be eliminated.
  • While I agree that this home test should not be a substitute for a doctor’s visit, I would also emphasize that neither should the FDA approved test be a substitute for a doctor’s visit, but herein lies another problem: doctors are hopelessly lost on virtually everything Lyme/MSIDS related.  Medical schools only teach a CDC narrative based on 40 year old science done by a Cabal that has vested interests.
  • LetsGetChecked must file a formal response to the complaint in court later this month, according to the online docket.  As far as I’m concerned the CDC and FDA have had a lot to answer for as well.

Category:

Activism, Lyme, Testing

Ren – The Talented Artist With Lyme Disease

http://

Oct. 2023

Ren & Lyme Disease

Ren lost a record deal because he was sick.  We learn in this interview that he was first diagnosed with bipolar disorder and given SSRIs which made all his symptoms worse.  He then experienced psychosis.  He was in such pain he would lie on the floor and dig his fingernails into it.

He finally found out he had Lyme disease but has also been diagnosed with MCAS, ME/CFS, ADHD, chronic depression, and intermittent episodes of psychosis.   If you go to his website, you will see his treatments consist of anti-psychotics, beta blockers, SSRIs, and electroconvulsive therapy but no antimicrobials are listed at all.

http://

Hi Ren

(Warning: Explicit Language)

This song demonstrates like nothing else the inner battle chronic Lyme/MSIDS patients have.  An inner conflicting battle of hope and utter darkness.  While a picture can represent 1,000 words, a song can evidently encapsulate a journey to hell, but with the determination to crawl back.

This is us in a song.

We lost a friend today after a long battle with Lyme/MSIDS:  https://www.eernissefuneralhome.com/obituaries/David-James-Ziegelbauer?obId=30047803&mibextid=cr9u03#/obituaryInfo

Category:

Activism, Lyme, Psychological Aspects