Archive for the ‘Lyme’ Category

Where’s the Manhattan Project to Find a Lyme Disease Cure?

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

Where is the GOVERNMENT DRIVEN MANHATTAN PROJECT to find a cure?

iu-82

OCT 1, 2020 — 

Please see the letter below regarding Dr. Horowitz’s recent laboratory findings on the effects of dapsone and intracellular antibiotics as a possible treatment for this antibiotic resistant/tolerant superbug responsible for chronic Lyme disease.

———- Original Message ———-

From: CARL TUTTLE <runagain@comcast.net>
To: “tickbornedisease@hhs.gov” <tickbornedisease@hhs.gov>
Cc: (97 Undisclosed recipients)
Date: 10/01/2020 8:51 AM
Subject: Effect of dapsone alone and in combination with intracellular antibiotics against the biofilm form of B. burgdorferi

To the Tick-Borne Disease Working Group,

When will our public health officials stop denying that we’re dealing with an antibiotic resistant/tolerant superbug?

Where is the GOVERNMENT DRIVEN MANHATTAN PROJECT to find a cure?  BMC Research Notes

Published: 29 September 2020

Effect of dapsone alone and in combination with intracellular antibiotics against the biofilm form of B. burgdorferi

Richard I. Horowitz, Krithika Murali, Gauri Gaur, Phyllis R. Freeman & Eva Sapi

https://bmcresnotes.biomedcentral.com/articles/10.1186/s13104-020-05298-6

Excerpt:

Several theories to explain persistent symptoms have been suggested, including immune evasion in privileged sites [14], antigenic variation [15], persistent antigenic stimulation [16], biofilm formation [17, 18] and B. burgdorferi persister cells, a highly resistant bacterial form which may protect the bacteria from antibacterial therapy. B. burgdorferi can exist in spirochetal, round body forms, intracellularly, as well as in newly discovered biofilm forms [4, 19,20,21,22,23,24,25,26,27,28,29]. Previous data suggested that standard and some newly discovered antibiotics for Lyme disease can be very effective in eliminating spirochetal, round body, intracellular and antibiotic tolerant persister cells [4, 20, 25,26,27] but have little effect on biofilm forms [24, 30]. Persisters are multi-drug tolerant cells present in significant numbers in biofilms [27, 29], and the importance of Borrelia biofilms has been highlighted in autopsy tissues from a well-documented Lyme disease patient [31]. Therefore, to successfully treat Lyme disease, there is an urgent need to find an agent or combination of antimicrobial agents which can efficiently eliminate resistant biofilm forms of B. burgdorferi.

Carl Tuttle

Lyme Endemic Hudson, NH

___________________

**Comment**

Unfortunately, mainstream medicine denies borrelia is pleomorphic & persistent, and calls it ‘quack’ science. This polarization has continued unabated since the 80’s when the Bayh Dole Act was passed authorizing federal agencies to grant exclusive licenses to inventions owned by the federal government.[7]  Since that time, those entrusted with public health have vested financial interests in the form of patents.  At the same time, monies for research came more and more from the federal government – creating an unholy alliance between the government, research institutions, and manufacturing.  This is the corrupted root that has now given way to politicized science that is dominating the research world.

The denial and conflicts have been felt by thousands upon thousands of Lyme/MSIDS patients as well as doctors who defy the narrative.

http://  Approx. 4 Min.

Leonard Hayflick – The Impact of the Bayh-Dole Act

I’m about 75% done with Polly Murray’s, “The Widening Circle,” which details her family’s experience with tick-borne illness as well as the early history of Lyme.

I must admit the information makes me even more frustrated over the lack of response to this debilitating illness.  It’s been over 40 years and yet the polarizing controversy continues and we have so little to show for something that is debilitating/killing people.

I plan to write a summary of the book when I’m through but it’s a whopper and almost familiar in that her litany of symptoms experienced by her ENTIRE family takes me back to my own bitter journey.  If you haven’t read her book, I highly recommend it.  But, prepare to be frustrated!

Category:

Activism, Lyme

Ticktective Podcast & Video Series

https://www.bayarealyme.org/blog/ticktective-podcast/

| NewsBy Bay Area Lyme Foundation

FOR IMMEDIATE RELEASE

Media Contact:
Tara DiMilia, 908-947-0500, tara.dimilia@TMstrat.com

Bay Area Lyme Foundation Launches Ticktective™ Podcast

PORTOLA VALLEY, Calif., September 30, 2020 — Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, announces the launch of the Ticktective podcast and video series.  Ticktective is a Bay Area Lyme Foundation program designed to investigate the latest scientific knowledge and advances in Lyme and tick-borne diseases. The podcast offers insightful discussion with researchers, physicians, patients, and thought leaders in the field.

“Because the science surrounding tick-borne disease is so complex and there are so many unanswered questions, Ticktective aims to share firsthand perspectives about the challenges of Lyme in ways that will intrigue more scientists, physicians and patients to join our battle towards making Lyme disease easy to diagnose and simple to cure,” said Linda Giampa, executive director, Bay Area Lyme Foundation.

There are more than 400,000 people diagnosed with Lyme disease each year in the US, and millions of Americans live with persistent Lyme disease (PLD) caused by an ongoing bacterial infection. The current “gold standard” diagnostic for Lyme disease misses up to 60% of cases of early stage Lyme disease, and if not treated promptly, Lyme may progress to a debilitating stage, becoming difficult, or impossible, to cure. Bay Area Lyme Foundation has funded over 100 research projects at 37 institutions across the US in a mission to find solutions for these patients.

“I’ve always had an insatiable curiosity, and my own diagnosis of Lyme disease has driven me to use this curiosity to find answers that will help lead to solutions for all tick-borne diseases,” said Ticktective host Lia Gaertner, who is the director of education and outreach for Bay Area Lyme Foundation and holds degrees in environmental science and ethnobotany.

Initial Ticktective interviews include conversations addressing the challenges of developing a diagnostic for Lyme disease, the scientific techniques being used to overcome these challenges, what motivates researchers taking on this challenge, and the frustration of patients.

  • 2020 Emerging Leader Award Winner Jacob Lemieux, MD, DPhil of Harvard University discusses the similarities and difference of Lyme disease and malaria, the promise of next-generation sequencing for developing a diagnostic, his lab’s role in COVID-19 research, and the intersection of COVID-19 and Lyme disease.
  • 2020 Emerging Leader Award Winner Artem Rogovsky, DVM, PhD of Texas A&M University discusses what he learned from radioactive ticks, why he is aiming to develop a direct diagnostic for Lyme, and how a conversation at a kids’ birthday party ignited the innovative idea for this diagnostic concept.
  • Liz Horn, PhD, MBI is principal investigator for the Lyme Disease Biobank, which aims to enable and accelerate research by providing scientists with the biological samples needed to conduct important experiments. The Biobank has enrolled over 900 participants and currently supports more than 55 research projects.
  • Singer-songwriter Dana Parish, who not only has numerous chart-topping singles, but has also become a strong advocate for people with Lyme disease after a tick bite in 2014 that progressed to a persistent infection despite antibiotic treatment. She discusses how she is “fighting the good fight,” and making progress in her personal battle and for the cause.

“I was driven to become a songwriter as I wanted to make people feel understood, knowing that the best songs are personal yet universal. With that same spirit, it’s been vital to me to use my voice to be honest about what I’ve learned about the travesty of tick-borne diseases. In an area of medicine filled with misinformation, Ticktective is bringing valuable insights and help straight to the Lyme community. I’m thrilled to have had the opportunity to share my Lyme experience with listeners of Ticktective,” said Parish, whom Gaertner refers to as a fierce champion for the under-represented Lyme community.

Listen to the Ticktective podcast here. Check out other resources of Bay Area Lyme Foundation, including printable fact sheets, videos, educational tools and more, and follow us on and Facebook, Twitter, LinkedIn and Instagram.

About Lyme Disease
The most common vector-borne infectious disease in the country, Lyme disease is a potentially disabling infection caused by bacteria transmitted through the bite of an infected tick to people and pets. If caught early, most cases of Lyme disease can be effectively treated, but it is commonly misdiagnosed due to lack of awareness and unreliable diagnostic tests. There are more than 400,000 new cases of Lyme disease each year, according to statistics released in 2018 by the CDC. As a result of the difficulty in diagnosing and treating Lyme disease, more than one million Americans may be suffering from the impact of its debilitating long-term symptoms and complications, according to Bay Area Lyme Foundation estimates.

About Bay Area Lyme Foundation
Bay Area Lyme Foundation, a national organization committed to making Lyme disease easy to diagnose and simple to cure, is a leading public not-for-profit sponsor of innovative Lyme disease research in the US.  A 501c3 non-profit organization based in Silicon Valley, Bay Area Lyme Foundation collaborates with world-class scientists and institutions to accelerate medical breakthroughs for Lyme disease. It is also dedicated to providing reliable, fact-based information so that prevention and the importance of early treatment are common knowledge. A pivotal donation from The LaureL STEM Fund covers overhead costs and allows for 100% of all donor contributions to Bay Area Lyme Foundation to go directly to research and prevention programs. For more information about Lyme disease or to get involved, visit www.bayarealyme.org or call us at 650-530-2439.

Category:

Activism, Lyme, research, Ticks

Would My Son Have His Lyme Disease Diagnosis Without My Mother’s Instinct? It’s Time We Trusted Our Patients

https://www.pharmaceutical-journal.com/news-and-analysis/opinion/blogs/would-my-son-have-his-lyme-disease-diagnosis-without-my-mothers-instinct-its-time-we-trusted-our-patients/

Would my son have his Lyme disease diagnosis without my mother’s instinct? It’s time we trusted our patients

Posted by: Arlene Brailey

28 SEP 2020

My battle as a parent against Lyme diseaseSource: Science Photo Library

For eight years, my son has been fighting a war against Lyme disease, with me alongside him.

I have endured countless sleepless nights, anxious that I am pushing too hard, but more troubled I have not done enough; fearful of backlash from respected colleagues over antibiotic prescribing, yet utterly convinced that doing nothing is no longer a viable option.

I have waged battles against countless healthcare professionals who failed to recognise the severe consequences of a missed diagnosis, inappropriate treatment, and worse: telling a patient it’s all in their head. (See link for article)

__________________

**Comment**

To answer this mom’s question, “No, your son wouldn’t have his diagnosis without your mother’s instinct and advocacy.”

Thank God for moms!

This story plays out over and over ad nauseam, unfortunately.

The son of this pharmacist went from an active, healthy boy to being bed-bound at 25.  He developed blurred vision, twitching painful muscles, insomnia, headaches, panic attacks, nausea, painful soles of his feet, low mood, severe fatigue, breathlessness, and more.

Bone-heads prescribed him antidepressants….

Test results for Lyme were negative – which is very, very common.

Thankfully his clinical psychologist agreed that this wasn’t ‘just in his head.’ But the infectious disease specialist felt is was chronic fatigue – not Lyme.  This too is very, very common.  In my experience infectious disease specialists are the worst, and are so closed minded it’s a waste of time trying to work with them.  

This statement is probably the Lyme/MSIDS motto:

I knew, then, we were fighting this battle on our own.

Again, expensive private testing showed numerous tick-borne infections.

All of this is an acute reminder that Lyme literate doctors (LLMDs) are the best choice for diagnosis and treatment. They have open minds, experience, and training for this despite the continuing effort of main stream medicine to malign them as ‘quacks’.  This is also another great example of complete and ongoing polarization within the medical community – much like we are seeing with COVID. 

Arlene Brailey is a pharmacist and trustee of the Lyme Resource Centre

Category:

Lyme, Testing

Study Shows DSM Works for Lyme – Reduces Inflammatory Markers & Antibody Titers

https://www.mdpi.com/2079-6382/9/9/633

Repurposing Disulfiram (Tetraethylthiuram Disulfide) as a Potential Drug Candidate against Borrelia burgdorferi In Vitro and In Vivo

by Hari-Hara S. K. Potula 1, Jahanbanoo Shahryari 1, Mohammed Inayathullah 1, Andrey Victorovich Malkovskiy 2, Kwang-Min Kim 1 and Jayakumar Rajadas 1,*
 
*Author to whom correspondence should be addressed.
Antibiotics 2020, 9(9), 633; https://doi.org/10.3390/antibiotics9090633
Received: 10 July 2020 / Revised: 17 September 2020 / Accepted: 21 September 2020 / Published: 22 September 2020
(This article belongs to the Special Issue Drugs Repurposing for the Treatment of Bacterial Infections)

Abstract

Lyme disease caused by the Borrelia burgdorferi (Bb or B. burgdorferi) is the most common vector-borne, multi-systemic disease in the USA. Although most Lyme disease patients can be cured with a course of the first line of antibiotic treatment, some patients are intolerant to currently available antibiotics, necessitating the development of more effective therapeutics. We previously found several drugs, including disulfiram, that exhibited effective activity against B. burgdorferi. In the current study, we evaluated the potential of repurposing the FDA-approved drug, disulfiram for its borreliacidal activity.
 
  • Our results indicate disulfiram has excellent borreliacidal activity against both the log and stationary phase B. burgdorferi sensu stricto B31 MI. Treatment of mice with disulfiram eliminated the B. burgdorferi sensu stricto B31 MI completely from the hearts and urinary bladder by day 28 post infection.
  • Moreover, disulfiram-treated mice showed reduced expressions of inflammatory markers, and thus they were protected from histopathology and cardiac organ damage.
  • Furthermore, disulfiram-treated mice showed significantly lower amounts of total antibody titers (IgM and IgG) at day 21 and total IgG2b at day 28 post infection.
  • FACS analysis of lymph nodes revealed a decrease in the percentage of CD19+ B cells and an increase in total percentage of CD3+ T cells, CD3+ CD4+ T helpers, and naive and effector memory cells in disulfiram-treated mice.

Together, our findings suggest that disulfiram has the potential to be repurposed as an effective antibiotic for treating Lyme disease. View Full-Text

______________________

For more:  https://madisonarealymesupportgroup.com/2019/10/15/disulfiram-psychosis-update/

https://madisonarealymesupportgroup.com/2020/05/26/potential-patient-reported-toxicities-with-disulfiram-treatment-in-late-disseminated-lyme-disease/

https://madisonarealymesupportgroup.com/2020/06/07/disulfiram-for-lyme-disease-profiles-of-two-patients-reporting-good-outcomes/

https://madisonarealymesupportgroup.com/2019/11/19/if-disulfiram-is-the-cure-for-lyme-disease-should-it-be-prescribed-to-all-lyme-disease-patients/

https://madisonarealymesupportgroup.com/2019/06/03/disulfiram-in-the-treatment-of-lyme-babesiosis-3-case-reports/

https://madisonarealymesupportgroup.com/2019/07/14/disulfiram-breakthrough-drug-for-lyme-other-tick-borne-diseases/

 

 

Category:

Inflammation, Lyme, Treatment

New Dapsone Study: Breaking Biofilm

https://lymediseaseassociation.org/about-lyme/science-a-professional-articles/new-dapsone-study-breaking-biofilm/

New Dapsone Study: Breaking Biofilm

Dr. Richard Horrowitz co-author of the published case study on Lyme disease and COVID-19
Dr. Richard Horowitz, lead-author: Effect of dapsone alone and in combination with intracellular antibiotics against the biofilm form of B. burgdorferi

New in vitro study on dapsone (diaminodiphenyl sulfone), and dapsone combination therapy (DDS CT) was just published by Dr. Richard Horowitz et al. and provides hope of effective treatment for patients with persistent Lyme disease.

The study is suggestive that dapsone combination therapy may well characterize both a novel and successful option to treat Borrelia burgdorferi persister cells in the form of biofilm.  There are several hypotheses causing great controversy regarding the persistent symptoms that greater than 10-20% of patients are experiencing after infection with B. burgdorferi. The study evaluated the effectiveness of dapsone against B. burdorferi biofilm forms of the bacteria by testing in individual as well as in combination therapy with several drugs including cefuroxime, doxycycline, rifampin, and azithromycin in vitro.

The results were robust, showing that using dapsone alone or in various combinations with the above stated drugs significantly reduced the mass and protective glycosaminoglycan layer affecting the capability of the biofilm form of B. burdorferi. DDS CT efficacy on the B. burgdorferi biofilms was also determined by ascertaining the biofilm polysaccharide matrix content, glycosaminoglycans (GAG).

Study results showed the most efficient single use antibiotic at reducing biofilm was dapsone at both 10 µM and 50 µM concentrations,  showing 69% and 58% residual viability respectively. Used individually, other antibiotic treatments (doxycycline, cefuroxime, and azithromycin) proved to be less efficient and, in some cases, even caused an increase biofilm mass. In contrast, triple and quadruple combination antibiotic therapies showed greater efficacy.

  • The most significant finding was that dapsone used individually or in combination therapy with rifampin, and a tetracycline and/or a macrolide and/or a cephalosporin showed great promise in the treatment of persistent Lyme patients, with prior clinical studies demonstrating improvement in many of the debilitating symptoms that patients suffer including fatigue, pain, neuropathy, sleep disturbances, cognitive dysfunction, sweats and flushing.
It is urgent that randomized trials are launched to evaluate the clinical effectiveness of DDS CT as the spread of Lyme disease continues to increase on a global scale.

Read the full journal article: Effect of dapsone alone and in combination with intracellular antibiotics against the biofilm form of B. burgdorferi

Read the 2016 article: The Use of Dapsone as a Novel “Persister” Drug in the Treatment of ChronicLyme Disease/Post Treatment Lyme Disease Syndrome

_____________________

**Comment**

This is great news.  If you suffer from chronic symptoms you may want to discuss this with your doctor and consider it in your treatment arsenal.  I have heard the side-effects from Dapsone are substantial so make sure you and your doctor read up on those and ways to mitigate them.  I know Dr. Horowitz utilizes many supplements for this purpose when using Dapsone.

For more:  https://madisonarealymesupportgroup.com/2020/06/26/new-treatments-for-lyme-disease-on-the-horizon/

https://madisonarealymesupportgroup.com/2016/05/09/leprosy-drug-for-lyme/

https://madisonarealymesupportgroup.com/2016/10/09/mycobacterium-drugs-for-ld/

Sadly, those RCTs are far down the research pipeline. Unfortunately the ‘sexy’ topic of climate change trumps effective treatments that would make life bearable for patients.  

Category:

Lyme, research, Treatment