Archive for the ‘Lyme’ Category

Documenting the Reality of Chronic Lyme Patients Through Photos

https://www.lymedisease.org/documenting-chronic-lyme/

Documenting the reality of chronic Lyme patients through photos

Zoe Lu, a fine art photographer based in New York, was diagnosed with neurological Lyme disease and co-infections two years ago.

She tells me that for a period of time, she could not walk, think, read or even sleep. She suffered from severe headaches, brain fog, stiff neck, fatigue, joint pain and depression. “I completely lost the ability to function normally,” she says.

Fortunately, with treatment she has improved enough to undertake a special photography project called “Nowhere Land.”  It focuses on the plight of people living with chronic Lyme and other tick-borne disease.

“I want to document and photograph people who are experiencing chronic Lyme,” she says. “I hope the public can see our situation and the reality of our suffering. “

So far, she has photographed 18 people from New York, Connecticut, New Jersey, and California. She’s looking for others who would like to participate from around the US.

You can find out more about her project at her website or her Instagram page. If you’d like to participate, you can DM or email her.

Her are some samples of photos she has already taken for this project.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, President of LymeDisease.org. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.

________________

**Comment**

I always appreciate when people use their sphere of influence to educate others about tick-borne illness.  I’m always amazed at the number of people that still haven’t heard of this devastating illness or believe myths about it.

Unfortunately, Lyme/MSIDS is hard to capture on film.  One of the often repeated phrases from well-meaning friends and family is “You look fine!”  Patients, on the other hand, feel like they are dying on the inside but the outside often looks quite normal.  This is one of the worst facets of the illness – people not believing you are as sick as you really are.

But, hopefully this project will educate people that could only be reached this way.  Regardless, undertaking a project like this is cathartic for the patient doing it as it is a way to express deep trauma that needs the light of day to expose it.  Kudos to Lu!

For more:

Category:

Activism, Lyme

UC San Francisco to Open Lyme Clinical Trials Center

https://www.bayarealyme.org/blog/national-lyme-clinical-trials-network-gains-its-first-west-coast-center-thanks-to-1m-donation-from-bay-area-lyme-foundation/

NATIONAL LYME CLINICAL TRIALS NETWORK GAINS ITS FIRST WEST COAST CENTER, THANKS TO $1M+ DONATION FROM BAY AREA LYME FOUNDATION

 | Diagnostics, News, TreatmentBy Bay Area Lyme Foundation

FOR IMMEDIATE RELEASE

National Lyme Clinical Trials Network Gains Its First West Coast Center, Thanks to $1M+ Donation from Bay Area Lyme Foundation

The University of California San Francisco Lyme Clinical Trials Center will support innovative clinical trials to develop treatments for patients with persistent Lyme disease

PORTOLA VALLEY, Calif., March 09, 2023 – Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, announces it has awarded more than $1M to the University of California San Francisco (UCSF) for the development of a Lyme Clinical Trials Center. This new center will become the first West Coast site of the Lyme Clinical Trials Network. The Network aims to address the need for high quality, innovative clinical trials to develop evidence-based treatments for patients with persistent Lyme symptoms following initial antibiotic treatment—a population that has grown to more than two million Americans and continues to increase.

“The founding of the UCSF Lyme Clinical Trials Center provides a unique opportunity for Lyme patients to participate in the next generation of therapeutic trials to combat this devastating disease,” said Charles Chiu, MD, PhD, of the University of California San Francisco who will lead the UCSF Lyme Clinical Trials Center. “Very few clinical trials have been initiated to investigate therapeutic solutions to address persistent symptoms of Lyme disease, and we hope to change this.”

UCSF will join the Lyme Clinical Trials Network led by Columbia University, which includes Children’s National Hospital (part of the National Institutes of Health), and Johns Hopkins University. This important effort is funded by the Steven & Alexandra Cohen Foundation.

“Bringing together these leading institutions from both coasts will enable collaboration that could accelerate the development of new treatments for patients with persistent Lyme disease, who currently have few options,” said Linda Giampa, executive director of the Bay Area Lyme Foundation. “Despite California having a great variety of tick-borne pathogens and having cases of Lyme as far back as the 1970s, patients who acquire these diseases in California have been underrepresented in research. We’re excited to have a unified network that can take into account the diversity of bacteria across geographies as these teams work together to tackle the lack of effective treatments for Lyme.”

Clinical symptoms may vary by region due to differences in tick-borne bacterial species and strains, making timely diagnosis and treatment extremely difficult. The creation of the UCSF Lyme Clinical Trials Center provides research and clinical scaffolding to help address these regional differences, with the hope of making treatment more effective, particularly for persistent disease.

“The Lyme Clinical Trials Network was created to help bring treatments and hope to Lyme disease patients and their families,” said Alexandra Cohen, president of the Steven & Alexandra Cohen Foundation. “We look forward to the continued growth of the Network and are excited to have UCSF join as the first West Coast site.”

Dr. Chiu will be overseeing the UCSF Lyme Clinical Trials Center, and its protocol development and grant writing. His team will be evaluating and treating patients for case registry and pilot studies, and publishing in conjunction with other Lyme Clinical Trials Network sites.

About Lyme disease
The most common vector-borne infectious disease in the US, Lyme disease is a potentially disabling infection caused by bacteria transmitted through the bite of an infected tick to people and pets, and/or potentially passed from a pregnant mother to her unborn baby. If caught early, most cases of Lyme disease can be effectively treated, but it is commonly misdiagnosed due to lack of awareness and inaccurate diagnostic tests. There are more than 500,000 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, up to two 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 the leading public not-for-profit sponsor of innovative Lyme disease research in the US. A 501c3 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 the 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.

About the Steven & Alexandra Cohen Foundation
The Steven & Alexandra Cohen Foundation is committed to inspiring philanthropy and community service. They do this by creating awareness, offering guidance, and leading by example to show the world what giving can do. Their grants support public 501(c)3 nonprofit organizations based in the United States that either help people in need or solve complex problems. They also spearhead grassroots campaigns to encourage others to give.

# # #

Media contact:

Tara DiMilia

Phone: 908-369-7168

Tara.DiMilia@tmstrat.com

_________________

**Comment**

It remains to be seen just how “unified” this network of collaborators will be.  So far, I’ve not been impressed with what’s come out of Columbia (other than the recognition that Lyme/MSIDS can cause all sorts of cognitive and psychiatric issues), the NIH, or Johns Hopkins University, as ALL of them have utilized the faulty and misleading PTLDS moniker, which essentially ignores persistent infection.  A recent 2021 paper co-authored by 31 researchers from 19 separate institutions includes many of these researchers from these institutions listed in this collaboration, and while persistent infection is mentioned, the emphasis is always on three things: the acute phase, PTLDS, and a new Lyme vaccine.  The myopic focus is so predictable you could write the script personally.

Nobody wants to touch chronic Lyme with a ten foot pole.
What’s sad is what little progress has been made in over 40 years on a complex illness that is infecting people by the day.

Category:

Activism, Lyme, research

Breaking: Mathematica Policy Research Declares: “The Lie is Too Big To Confess”

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

Breaking News:  Mathematica Policy Research Declares; “The Lie is Too Big to Confess”

Carl Tuttle

Hudson, NH, United States

MAR 3, 2023 — 

The facts presented in this letter have always represented a real threat to the CDC’s business model/vaccine agenda so the truth has been suppressed/distorted for decades to promote the false Lyme disease narrative; “Hard to catch and easily treated”

A chronic relapsing seronegative disease does not fit the vaccine model.

Mathematica Policy Research has been contracted by the CDC. (See previous Petition Updates)

Breaking News:  Mathematica Policy Research Declares; “The Lie is Too Big to Confess”

The 30year Lie: Lyme disease is “Hard to catch and easily treated”

“Post Treatment Lyme Disease Syndrome” (PTLDS) is simply a fabricated medical condition disguising treatment failure.

Mathematica Policy Research will obey the CDC’s Lyme disease narrative and ignore any evidence of persistent infection following the IDSA’s one-size-fits-all treatment guideline (soon to be mandate) and continue the fixation on the acute stage of infection after early treatment hiding the horribly disabled who missed the narrow window of opportunity (30 days) for successful short-term treatment.Disallowing the following:

About Mathematica Policy Research
https://www.appam.org/spotlight-mathematica-policy-research  Considered an architect of social policy research, Mathematica Policy Research provides expert design and evaluation to guide decision-making that improves public well-being. For more than four decades, the employee-owned company has been at the forefront of assessing the effectiveness of policies and programs.

______________________________________________

Notice to the reader: Although this article has not been published in any news outlet and is a satirical viewpoint of the CDC/Mathematica relationship it contains factual information and should be taken seriously since a Lyme vaccine is in the pipeline. All of what we have just experienced through Covid looks to repeat itself: false narrative, censorship of the truth, facts and scientific references, physicians being censured and certainly we do not want the public to believe that long-term antibiotic treatment is an alternative to the new “safe and effective” Pfizer Lyme vaccine.

Category:

Activism, Lyme, vaccines

Wrongful Death Lawsuit Finally Going to Trial?

https://www.lymedisease.org/will-this-wrongful-death-lawsuit-finally-come-to-trial/

Will this wrongful death lawsuit finally come to trial?

March 3, 2023

Joseph Elone died of Lyme disease

Investigative reporter Mary Beth Pfeiffer posted the following on her Facebook page on March 3.

On Aug. 5, 2013, Joseph Elone, 17, died of Lyme carditis, soon after spending two weeks at a summer camp in Rhode Island. Lyme tests were negative; no rash was found, and he was not treated with antibiotics that would have saved his life.

Nearly a decade later, a wrongful death lawsuit filed by his family in 2015 may finally go to trial, according to a judge’s firmly worded order on Feb. 23. More than 300 documents have been filed so far. Something is going to come of this lawsuit or it would not have survived this long. I hope so.

Beyond the delays that have plagued the case, another injustice persists. What happened to Joseph could happen again today. Lyme tests still fail often in early disease, and doctors are discouraged from treating without a positive test or visible rash.

In another carditis death, a jury ordered a Maine hospital this month to pay $6.5 million in the death of a 25-year-old man. He, like Joseph, had sought help twice; despite fever, chills and a slight rash, his doctor saw “no sign of Lyme disease.”

I wrote about Joseph for the Poughkeepsie Journal and in my book; his story was also told in the play, “The Little Things.” For his family, I hope closure and change comes.

Read LymeDisease.org’s 2016 review of “The Little Things,” a play about the death of Joseph Elone.

Category:

Activism, Heart Issues, Lyme

Lyme and POTS

https://www.globallymealliance.org/blog/lyme-disease-and-pots

Lyme Disease and POTS

by Jennifer Crystal on February 3, 2023

<span id="hs_cos_wrapper_name" class="hs_cos_wrapper hs_cos_wrapper_meta_field hs_cos_wrapper_type_text" style="" data-hs-cos-general-type="meta_field" data-hs-cos-type="text" >Lyme Disease and POTS</span>

Have you heard of POTS?

Between my freshman and sophomore years of college, I was bitten by a tick while working at a summer camp in the woods of Maine. As I’ve described in many of my blog posts, it took eight years for me to be accurately diagnosed, and during that time I suffered from a range of physical and neurological symptoms. During the fall semester of my sophomore year, I had flu-like symptoms as well as symptoms of what the college nurses thought were panic attacks.

Looking back now, I wonder if my heart palpitations, lightheadedness, and dizziness were in fact signs POTS, or Postural orthostatic tachycardia syndrome. At the time, POTS was little if at all understood, but now researchers and physicians are seeing POTS not just in Lyme disease patients but also in conditions like long COVID and ME/CFS.

Explains Postural Orthostatic Tachycardia Syndrome (POTS)

POTS occurs when moving from lying to standing causes an increase in heart rate by at least 30 beats per minute for adults and 40 beats per minute for children. In addition to this abnormal increase in heart rate, the Heart Rhythm Society defines POTS as a clinical syndrome characterized by symptoms of lightheadedness, blurring of vision, palpitations, intolerance to exercise, and fatigue, as well as the absence of orthostatic hypotension[i] (meaning the blood pressure does not drop when the heart rate rises). I experienced all of these symptoms that fall in college. Had POTS been more well-known, its symptoms could have pointed puzzled medical practitioners in the direction of tick-borne disease. That was 1997; a recent study shows that the incidence of POTS has increased four-fold since 2000.[ii]

Another Lyme-related condition, Lyme carditis

Heart-related symptoms such as racing heartbeat can also be a sign of another condition known as Lyme carditis, when the Lyme bacteria goes to the heart. This can cause atrioventricular block, often referred to as “heart block,” which is an electrical disconnect between the upper and lower chambers of the heart, causing them to beat at different rhythms. Lyme carditis can also manifest as costochondritis (inflammation of the cartilage that connects the ribs to the breastbone), tachycardia (racing heart rate) and bradycardia (slow heart rate). It can also cause myopericarditis (inflammation of the heart muscle and lining), which patients may feel as chest pain or shortness of breath.

Though Lyme carditis is rare, according to a 2008 study, 4% to 10% of all patients with Lyme borreliosis. Whenever the clinical suspicion of Lyme carditis arises, an ECG is mandatory to detect or exclude an atrioventricular conduction block.

If you have already been diagnosed with Lyme disease, it’s important that your doctor check specifically for Lyme carditis, and also evaluate you for POTS. If you are experiencing symptoms of either Lyme carditis or POTS, see a Lyme Literate Medical Doctor (LLMD) to find out if tick-borne disease may be the cause. I only wish I had seen a LLMD sooner; I might have avoided years of suffering.

Click here to read more blogs.

[i] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7255540/

[ii]  Epidemiology of postural tachycardia syndrome. [Apr;2020 ];AbdelRazek M, Low P, Rocca W, Singer W. https://n.neurology.org/content/92/15_Supplement/S18.005 Neurology. 2019 92:0.

The above material is provided for information purposes only. The material (a) is not nor should be considered, or used as a substitute for, medical advice, diagnosis, or treatment, nor (b) does it necessarily represent endorsement by or an official position of Global Lyme Alliance, Inc. or any of its directors, officers, advisors or volunteers. Advice on the testing, treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient’s medical history.

Jennifer Crystal

Opinions expressed by contributors are their own. Jennifer Crystal is a writer and educator in Boston. Her work has appeared in local and national publications including Harvard Health Publishing and The Boston Globe. As a GLA columnist for over six years, her work on GLA.org has received mention in publications such as The New Yorker, weatherchannel.com, CQ Researcher, and ProHealth.com. Jennifer is a patient advocate who has dealt with chronic illness, including Lyme and other tick-borne infections. Her memoir about her medical journey is forthcoming. Contact her via email below.

Email: lymewarriorjennifercrystal@gmail.com

Category:

Heart Issues, Lyme