Archive for the ‘Lyme’ Category

Novel Therapy Destroys Lyme in Lab

https://projectlyme.org/novel-therapy-destroys-lyme-in-lab/

Novel Therapy Destroys Lyme In Lab

Research Identifies New Investigational Therapy Regimen Capable of Irreversibly Damaging Lyme Bacteria in Laboratory Tests

Inspired by research that targets cancer tumors, these new findings in Lyme could also lead to novel R&D strategies for other diseases. This project was partially funded by Project Lyme, in partnership with the Bay Area Lyme Foundation. Learn more about our funded research here.

http://

Dr. Neil Spector Research Project

Nov. 1, 2023

PORTOLA VALLEY, Calif. November 1, 2023 – Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, today announced the development of a potential new drug, HS-291, that targets and destroys Borrelia burgdorferi, the bacterium that causes Lyme disease. Published in the peer-reviewed journal Cell Chemical Biology, this laboratory study represents a novel paradigm shift for anti-microbial treatment research as it is the first to target and inhibit Borrelia burgdorferi HtpG (high-temperature protein G), a specific type of enzyme within the bacteria that causes Lyme disease— a condition affecting nearly 500,000 new patients annually. The research was conducted at Duke University School of Medicine, with collaboration from the University of North Carolina, Tulane University, and Stanford University, and HS-291 is currently in preclinical stage testing at UC Davis.

“As Lyme disease is currently treated with broad-spectrum antibiotics and there are no targeted treatments, we are particularly excited about this discovery, and hopeful that our novel Lyme disease therapeutic HS-291 will specifically destroy the Lyme bacterium without off-target effects or antibiotic resistance,” said Timothy Haystead, PhD, professor of Pharmacology and Cancer Biology, Duke University School of Medicine, Bay Area Lyme Foundation grantee, and co-lead author. “This research has been an incredible opportunity to leverage knowledge from oncology to Lyme disease to design an investigational therapeutic that could one day benefit hundreds of thousands of patients with Lyme.”

This discovery has implications beyond Lyme disease as it demonstrates that using the drug HS-291 to deliver cellular toxins to HtpG, a type of non-essential enzyme that assists the folding or unfolding of large and complex proteins, greatly expands what can be considered druggable within any pathogen and opens a whole new area of infectious disease research.

When activated, HS-291, an inhibitor of HtpG tethered to the photoactive cellular toxin verteporfin, causes discrete protein modifications, which wreaks havoc on the Lyme disease bacterium’s DNA. This impacts multiple processes including nucleoid collapse and cell wall disruptions. A single dose of HS-291, when activated by light, irreversibly damages Borrelia proteins in close proximity of Bb HtpG in vitro.

“Antibiotics used to treat Lyme disease do not always work for all patients, which causes many to suffer for years with extreme symptoms including neurocognitive issues, disabling fatigue and sleep disruption,” said Linda Giampa, executive director of the Bay Area Lyme Foundation. “Bay Area Lyme concentrates on funding innovative research, including projects where knowledge can be deployed from other areas of medicine. We hope that this discovery will inspire others to join us in investing in impactful, translational research to bring relief to patients.”

This research was made possible by a 2020 Bay Area Lyme Foundation grant of more than $2 million to Duke University School of Medicine in honor of Neil Spector, MD, a renowned oncologist who passed away from complications of Lyme disease that had been misdiagnosed for years. He encouraged scientists to take cancer staging techniques and immunotherapy learnings from oncology and apply them to Lyme research. Dr. Spector was the Sandra Coates associate professor in the Duke University Department of Medicine and also served on Bay Area Lyme Foundation’s Scientific Advisory Board.

Haystead and Spector joined forces as Spector sought to leverage his knowledge of oncology to help better understand Lyme disease, and Haystead’s research is focused on the use of chemical biology approaches to define novel drug targets focused on the treatment of hypertension, obesity, cancer, inflammatory and infectious disease.

Bay Area Lyme Foundation also funded University of North Carolina collaborator, Matt Redinbo, PhD’s research on HS-291; his lab’s crystallography work was instrumental in the discovery process.

Bay Area Lyme Foundation’s research grant program was made possible by the support from the Fairbairn Family, the Younger Family Fund, and Project Lyme.

For more:

Category:

Lyme, research, Treatment

Not Good: Medscape – New Federal Oversight of Lab Developed Tests

The following information about “FDA approved” tests is a perfect example of corrupt government agencies doing what they do best: monopolize and control disease for their own purposes – usually financial.

They have restricted doctor and patient choice, care, and access in a number of ways, but one way they cling to like a survivor on a raft is testing. Lyme testing has been fraudulent from the get-go and their suppression of other tests is something that should be made into a movie.  In so many ways the CDC and FDA are maniacal evil twins – both doing all within their power to monopolize medicine.

Dr. Sin Hang Lee has sued the CDC for suppressing direct detection tests for Lyme disease, and promoting their own newly patented, unproven metabolomics technology for diagnosis of LD. Current and former CDC representatives receive royalties as a result of working on the approval and promotion/CDC endorsement of a Lyme disease serology test.

Lee has been fighting back with equal tenacity and performed independent research on faulty COVID testing which showed COVID cases will be overstated by a factor of 72%!

Instead of fixing the obvious errors (no positive control sample, no data on false positives, faulty cycle thresholds, and refusal to publish Ct values due to it being “proprietary”,) HHS, FDA, and CDC opted for arbitrary and perpetual diagnosis of COVID.

It’s important the CDC and FDA control testing because then they can completely steer the narrative about any disease – even if the numbers are all based on faulty testing.  They’ve been doing this in Lymeland for over 40 years by

“setting arbitrary level of antibodies to diagnose a disease that has not been amenable to Koch’s postulates seems open to question.  By the same token, ignoring antibody results unless they meet arbitrary levels seems suspect.  The vast majority of patients in this series showed some WB antibody exposure, but many did not meet the arbitrary limits set….in our present state of knowledge, the diagnosis of chronic Lyme disease is a clinical one.  Many of the patients in this series have suffered serious ‘hurts’ when they have been told that they could not have LD because their WB did not meet arbitrary limits.”  ~ Dr. Burton Waisbren  IDSA founder who disagreed with his colleagues.  RIP

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/  Video within link (Approx. 10 Min)

Medscape: New Federal Oversight of Lab Developed Tests

Carl Tuttle

Hudson, NH, United States

NOV 1, 2023 — 

Please see the following inquiry sent to Dr. Paul Auwaerter regarding his commentary (verbal diarrhea) published on Medscape.  He has yet to respond to my serious question. Why not email Dr. Auwaerter and demand a response?

Auwaerter’s image was found on his Hopkins profile page:
https://www.hopkinsmedicine.org/profiles/details/paul-auwaerter

———- Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: “pauwaert@jhmi.edu” <pauwaert@jhmi.edu>, “pgauwaerter@gmail.com” <pgauwaerter@gmail.com>
Cc: “aaguilar@webmd.net” <aaguilar@webmd.net>, “DFlapan@Medscape.net” <DFlapan@Medscape.net>, “lkane@medscape.net” <lkane@medscape.net>, “gamiller@medscape.net” <gamiller@medscape.net>, “dolmos@webmd.net” <dolmos@webmd.net>, “sarah.wright@webmd.net” <sarah.wright@webmd.net>, “editor2@webmd.net” <editor2@webmd.net>
Date: 10/25/2023 9:51 AM EDT
Subject: Medscape: New Federal Oversight of Lab Developed Tests

Medscape COMMENTARY
 
New Federal Oversight of Lab Developed Tests
https://www.medscape.com/viewarticle/997365

Paul G. Auwaerter, MD

Excerpt:

“I often see patients who are concerned they might have Lyme disease, or they’ve been told by other physicians that they have a tickborne or multiple infections. I’ve had patients who claim to have five or six infections: Lyme disease, Babesia, Bartonella, Mycoplasma, or Epstein-Barr virus. They bring LDT results from outside laboratories, which often have a proviso that these tests are only for research or educational purposes. Yet, they purport finding analytes (antibodies or proteins) that suggest the patient has an active infection. These patients may have been treated but are not improving, so they are referred to me.”

Oct 25, 2023

The IDSA Foundation
1300 Wilson Boulevard Suite 300
Arlington, VA 22209
Attn:  Paul Auwaerter, vice chair of the IDSA Foundation

Dear Dr. Auwaerter,

As a member of New Hampshire Governor Chris Sununu’s 2020-2021 commission to study diagnostic testing for Lyme disease, I read your commentary with great interest. After a full year of deliberation, study results concluded that the FDA approved two-tier serologic immunoassay for Lyme was not reliable in all stages of disease. (No better than a coin toss)

COMMISSION TO STUDY TESTING FOR LYME AND OTHER TICK-BORNE DISEASES
https://www.gencourt.state.nh.us/statstudcomm/committees/default.aspx?id=1515

“A commission to study the role of clinical diagnosis and the limitations of serological diagnostic tests in determining the presence or absence of Lyme and other tick-borne diseases”
 
With that conclusion, serology cannot be used to determine who has or does not have Lyme disease.

“FDA approval” (Federal Oversight) has failed miserably in this example.

The CDC has warned the medical community that “surveillance case definitions” (which include the IgM and IgG Western blot serologic bands) are not to be used for making a clinical diagnosis:

From the CDC website:

Lyme Disease (Borrelia burgdorferi)
2022 Case Definition
https://ndc.services.cdc.gov/case-definitions/lyme-disease-2022/

NOTE: A surveillance case definition is a set of uniform criteria used to define a disease for public health surveillance. Surveillance case definitions enable public health officials to classify and count cases consistently across reporting jurisdictions. Surveillance case definitions are not intended to be used by healthcare providers for making a clinical diagnosis or determining how to meet an individual patient’s health needs.
________________________

Recent announcements:

1. “Standard” Lyme testing once again proves fatal
https://www.lymedisease.org/lyme-testing-proves-fatal/

“Lyme disease helped kill our son. A better test might have saved him.”

2. Sensitivity of Two-Tiered Lyme Disease Serology in Children with an Erythema Migrans Lesion 
https://doi.org/10.1093/jpids/piad073

Abstract

In our prospective cohort of 192 children with a physician-diagnosed erythema migrans (EM) lesion, two-tier Lyme disease serology had higher sensitivity in children with multiple EM lesions (76.8% multiple lesions vs. 38.1% single EM; difference 38.7%, 95% CI 24.8 to 50.4%). The diagnosis of cutaneous Lyme disease should be based on careful physical examination rather than laboratory testing.

3. Jury awards $6.5M to Maine family for wrongful death, negligent misdiagnosis
https://fox23maine.com/news/local/jury-awards-65m-to-maine-family-for-wrongful-death-negligent-misdiagnosis-mercy-hospital-dr-john-henson-peter-smith-lyme-disease-lyme-carditis-physicians

Court records show Dr. Henson diagnosed smith with a skin disorder and a virus, writing “no sign of Lyme Disease.” Smith died of Lyme carditis.

(I understand that serology was NEGATIVE in this case)

Question:

Dr. Auwaerter…  I would like to call attention to the following 2009 tick study conducted here in New Hampshire:

Correlation between Tick Density and Pathogen Endemicity, New Hampshire
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2671416/

The study found deer ticks were carrying multiple pathogens (co-infections) that could be transmitted in a single bite.

What FDA approved Tick-Borne Disease Panel are you recommending so as not to miss any of these infections?

A response to this inquiry is requested
Carl Tuttle
Hudson, NH

Cc: MEDSCAPE EDITORIAL STAFF

Additional reference:

“Seronegativity in Lyme borreliosis and Other Spirochetal Infections” 16 September 2003
https://www.dropbox.com/s/3d6m45jzlhhwalu/Seronegativity.pdf?dl=0

“If false results are to be feared, it is the false negative result which holds the greatest peril for the patient.”

Category:

Activism, Lyme, research, Testing

Chronic Lyme & the CDC

https://www.globallymealliance.org/blog/chronic-lyme-is-getting-more-validation?

Chronic Lyme is Getting More Validation

byJennifer Crystal October 23, 2023

The narrative around chronic Lyme disease is shifting, bringing more validation to those who have been battling for recognition of their illness. Despite the progress, there is still work to be done.

The narrative around chronic Lyme disease is shifting. If you have chronic Lyme, you might read that sentence and roll your eyes. I understand if you do. For decades, Lyme warriors have been battling doctors, friends, family members, insurance companies, and the government for validation of their illness. For validation of themselves.

Yes, of themselves. Chronic Lyme is not, in fact, an identity, as was erroneously and hurtfully purported in a 2019 New York Magazine “The Cut” article that made the rounds again this summer. As I explain in my recent “What it Means to Live with Chronic Lyme Disease” blog post, chronic Lyme is a clinical diagnosis of persistent Lyme disease symptoms that must be made by a medical doctor. It is not a diagnosis of exclusion, a chosen diagnosis, or a chosen identity. No one wants to be a Lyme warrior, but when they’ve been sick for months or years due to delayed diagnosed, complications with co-infections, immune dysregulation, treatment-resistant infection, or other factors, Lyme disease does become part of their identity. Thus, when their illness is denied, it feels like part of themselves is denied.

I continued to sometimes wrestle this denial even after I found Lyme literate doctors, my friends and family became Lyme literate, and I twice achieved remission. I still had to fight for validation from insurance companies, new doctors, and, often, the general public, whose narrative about Lyme had trickled down from what they heard from the government or in the news. Chronic Lyme was still a contentious term, one that I had to be careful to avoid depending on my audience. In articles, the term was often written in quotation marks, suggesting that it wasn’t real. Articles like the one in “The Cut” and others debated the veracity of the illness.

This was a reality for so long that many people don’t realize is changing. I was upset when “The Cut” article got shared on social media again this summer, because it’s old, fake news. In 2023, chronic Lyme hasn’t fully gained the acceptance the Lyme community would like, but the needle is absolutely shifting.

Take, for example, the recent Boston Globe article “Chronic Lyme Disease Research Gets Big Boost.” The title alone is cause for celebration, especially from a publication that has previously run articles questioning chronic Lyme or using alternate terms for it. (In fact, my first big Lyme-related publication was an op-ed in response to a Boston Globe piece almost a decade ago). In “Chronic Lyme Get a Big Boost,” the word chronic is not in quotation marks. It’s just stated as a name of a disease that desperately needs—and is finally getting—research attention. The article goes on not to question chronic Lyme, but to discuss its possible causes, which are being studied by the NIH.

While the article does loop chronic Lyme patients under the Post Treatment Lyme Disease umbrella—when the inverse is actually true—it doesn’t use the PTLD term exclusively, but instead uses liberally and without question the terms chronic Lyme and long Lyme. The article quotes, “In announcing the new grants, the NIH said it hopes that broadening scientific understanding of what causes chronic Lyme might help researchers decipher similar mysteries with other infection-associated chronic illnesses, like long COVID and myalgic encephalomyelitis, formerly known as chronic fatigue syndrome.” Thanks to long COVID, other long-haul illnesses like chronic Lyme are finally getting the attention and validation they’ve needed for too long.

A big part of the chronic Lyme debate has always been whether Lyme can cause persistent infection following a short course of treatment. Over the years, we’ve watched the science catch up to the lived experience of chronic Lyme infection. And while we haven’t heard a definitive “chronic Lyme is caused by chronic infection” from important stakeholders, we are hearing that infection is one of the possible causes of chronic Lyme, and that researchers are studying other causes like altered neural pathways, immune dysregulation and chronic inflammation.

To me, there are two important shifts here: the first is that chronic infection is being accepted as a legitimate cause of persistent symptoms. The second is that the other options are not necessarily being considered instead of persistent infection—when for years the pat line was, “chronic Lyme infection doesn’t exist, so it must be something else”—but possibly in addition to infection. In other words, the causes of chronic Lyme disease are probably not mutually exclusive.

This is evident in the updated wording on the CDC website, which says, “The state of the science related to the persistent symptoms associated with Lyme disease is limited, emerging, and unsettled. Additional research is needed to better understand how to treat, manage, and support people with persistent symptoms associated with Lyme disease.” While the CDC isn’t using the term chronic Lyme, they are validating the experience as well as the need for better research to understand it. Again, the needle is moving in the right direction.

With Lyme treatment and recovery, everything happens in baby steps (sometimes forward and sometimes backwards). We want to get immediately better, but when you’ve been sick for a long time, there isn’t a quick fix. We appreciate little progress as we work towards a larger goal of wellness. When it comes to validation of chronic Lyme disease, I similarly appreciate the progress that is being made, knowing there is still distance to be covered. I believe we Lyme warriors have reason to hope.

***

Writer
By Jennifer Crystal

https://www.globallymealliance.org/news/the-long-shadow-of-lyme-infection-cdc-update-sparks-new-conversation

Chronic and Persistent Lyme Symptoms: CDC Update Underscores Progress

by Global Lyme Alliance on October 30, 2023

The CDC’s update on Lyme infections is a shift in tone on the long-lasting symptoms and challenges faced by individuals. As acceptance of ‘long COVID’ and the concept of persistent illnesses grows in familiarity, the CDC’s update on Lyme disease is no exception.

In the evolving landscape of post-infection ailments, the CDC’s recent update delves into persistent symptoms following Lyme infections. This exploration underscores a crucial reality: infections can cast a long shadow, leaving individuals with enduring symptoms that debunk conventional CDC timelines, persisting for weeks, months, or even longer, despite what is deemed ‘appropriate’ treatment.

The CDC’s goes on to list disease agents or co-infections associated with chronic symptoms, including Borrelia burgdorferi, Campylobacter, Chikungunya virus, Coxiella burnetii, Dengue virus, Ebola virus, Epstein Barr virus, Enterovirus, Poliovirus, SARS-CoV-2 (COVID-19), and West Nile virus. What’s striking is the challenge faced by many: identifying the specific infection triggering these persistent symptoms. For some, the initial infection might have gone unnoticed, leading to a diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome.

This update holds broader significance. For years, the medical community, including the CDC, resisted acknowledging the chronic nature of Lyme disease. Even after distancing itself from the IDSA Lyme treatment guidelines, which denied the existence of chronic Lyme, the CDC remained cautious in recognizing persistent Lyme symptoms. However, the arrival of COVID-19 shifted the paradigm dramatically.

The pandemic brought forth a wave of ‘long COVID’ cases, characterized by symptoms like debilitating fatigue and cognitive fog—symptoms strikingly similar to those endured by individuals with persistent Lyme disease, ME/CFS, and other chronic conditions. A 2022 CDC survey revealed the staggering scale of long COVID’s impact: nearly 18 million Americans wrestled with it since the pandemic began, with almost 9 million still affected at the time of the survey.

Perhaps ‘long COVID’ forced the hand of the CDC to shift its language around Lyme disease.  Nevertheless, this is not an admission of chronic Lyme, but it is an acknowledgement of chronic illness and symptoms that interplay with a Lyme diagnosis. This update underscores progress, acknowledging the enduring impact of infections. Yet, it serves as a stark reminder of the long road ahead in the fight for recognition and understanding of chronic Lyme disease. While the CDC’s step towards recognizing persistent symptoms is notable, the battle for acknowledging and addressing chronic Lyme disease at the CDC is far from over.

To see the updated webpage on the CDC’s website, click here

_____________

**Comment**

I do not share the same optimism as the authors of these articles, and I write about my reasons in the comment section of this article.

In short, the CDC is such an abject, conflict riddled organization that abandoned science so long ago, it should be completely disbanded.  Any statements it makes should not only be taken with a grain of salt – you should do the exact opposite.

If their brazen, continued illegal handling of COVID didn’t prove this, nothing will.

This institutionally biased agency has manipulated, ignored, and hidden data for its own purposes, insists upon using its own faulty tests, cherry picks and destroys inconvenient data, owns patents on virtually every aspect of disease, and actually purchased, monitored, and used your cell phone data.  Source

For some reason people still want to believe in this evil agency when it has done nothing to help patients.  And when I say nothing, I mean nothing. In fact, it has been the direct cause of patient suffering for over 40 years.  Did you know it began in 1798 as the Marine Hospital Service (MHS) which then morphed into the Public Health Service (PHS) in 1902 that sprayed for mosquitoes with DDT during WWII.  What started as 400 employees mushroomed to 15-16 thousand.  Did you know that it was behind the Tuskagee Experiment before changing its name to the Communicable Disease Center (CDC) which then became the Centers for Disease Control (CDC)?  The agency’s initial focus was on tropical and subtropical diseases.

Did you know it is not a true government agency due to vast amounts of private funding it funnels through the CDC Foundation?
No matter how many times this agency changes its name, it remains the same evil, corrupt agency.

I also question the entire premise of “Long-COVID.”  Until the “vaccinated” are separated from the unvaccinated – nobody will ever get a true picture of anything.  “Long-COVID” could very well be a bait and switch to distract from all the adverse reactions from the gene therapy injections that are riddled with so many problems it’s hard to keep up with them all.  ‘The powers that be’ definitely need a scape-goat and “Long-COVID” fits the bill perfectly.

I’m so done with the CDC and you should be too.  

Category:

Activism, Lyme, Viruses

CDC Now Lists Lyme As Infection That Can Cause Chronic Symptoms – Don’t Expect Much From This

https://www.lymedisease.org/cdc-chronic-lyme-iaccpac/

CDC now lists Lyme as infection that can cause chronic symptoms

A new page on the CDC website is headlined Chronic Symptoms Following Infections.

It goes on to say: “Infections can sometimes leave people with symptoms that last for weeks to months or longer, even after appropriate treatment.”

(I quibble with their use of “appropriate.” But I’ll leave that alone for now.)

Look what the CDC web page says next–and notice what’s at the top of the list:

Some disease agents that have been linked to chronic symptoms

Some people with chronic symptoms following infections may not know which infection triggered the symptoms, or even recognize that they had an infection before their chronic symptoms began. People with chronic symptoms and unknown preceding infection may be diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome.

Why is this significant?

For years, the CDC and others in the medical establishment have been loathe to acknowledge that Lyme disease can turn chronic.

For a long time, the agency openly endorsed the IDSA Lyme treatment guidelines, which flatly deny that chronic Lyme exists. Even when the CDC removed the link to the IDSA guidelines from their website and softened some language, there was little support for the concept of persistent symptoms of Lyme disease.

Then along came COVID…

COVID-19 changed all that. Soon after the beginning of the pandemic, so many people began experiencing long-term symptoms of the illness that the term “long COVID” entered the national lexicon. Among the most prominent symptoms of long COVID were debilitating fatigue and brain fog–two symptoms also common in people with persistent Lyme disease, ME/CFS, and a host of other chronic conditions.

According to a 2022 CDC survey, nearly 18 million Americans have suffered from long COVID at some point since the pandemic began, and almost 9 million did at the time of the survey.

Those numbers were too big to ignore–and it opened the door for looking at other chronic conditions that shared symptoms with long COVID.

In June 2023, the National Academy of Science, Engineering and Medicine (NASEM), brought together high-level health officials, academic researchers, and knowledgeable patient advocates to look at the question of “infection-associated chronic illnesss.”

And just this past week, patient advocates that have joined IACCPAC–the Infection-Associated Chronic Conditions Patient Advocacy Coalition–held an online webinar introducing the coalition and its goals.

These are the groups currently involved in IACCPAC:

LymeDisease.org’s Lorraine Johnson was among the panelists at the IACCPAC workshop. She emphasized that patients can’t wait for decades-long studies to determine which treatments are best. It’s essential to accelerate research now.

The various conditions listed above are different in many ways, but they share many unique challenges. By working together, we’ll be able to accomplish things that are much harder to do individually.

I believe things are starting to shift. Stay tuned.

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, and of Finding Resilience: A Teen’s Journey Through Lyme Disease. Contact her at dleland@lymedisease.org.

_______________

**Comment**

The only reason the CDC changes anything is if it benefits their bottom-line and their vested interests. Admitting diseases can be “chronic,” “persistent,” or “long haul” will assist their “vaccine” narrative – particularly using the mRNA platform.  Rather than finding safe, cheap, repurposed drugs to help patients, or accurate testing, it will all be used for lucrative “vaccine” research and development.

I don’t expect much to happen from this, other than many Lyme advocates will continue to support government agencies that have only gas-lit and ignored patient suffering.

If you click on the Lyme link, it leads you here with the infamously biased title Post-Treatment Lyme Disease Syndrome.  While it at least states that some experts believe it’s an auto-immune response while others hypothesize that PTLDS is from persistent but difficult to detect infection, while yet others believe it’s due to other causes unrelated to Borrelia burgdorferi infection, here’s the kicker: 

Studies funded by the National Institutes of Health (NIH) have found that long-term outcomes are no better for patients who received additional prolonged antibiotic treatment than for patients who received placebo. Long-term antibiotic treatment for Lyme disease has been associated with serious, sometimes deadly complications, as described in the links below.  Patients with PTLDS usually get better over time, but it can take many months to feel completely well.

This right here means nothing is going to change. While long-term antibiotics may not be the answer for every Lyme/MSIDS patient, they saved my life, my husband’s life, and the lives of countless others, but due to this unchanging threatening verbiage – no mainstream doctor will dare to prescribe the very thing that could save lives.

I’m not a negative person, but I am a realist.  A pig with lip-stick on is still a pig.

Don’t expect much from this other than gad-loads of money continuing to be spent on the wrong things – including “climate change.”

Just like Fauci told the government NOT to do autopsies on COVID deaths, and just like they made it illegal to analyze what was in the COVID injections, the very thing that could end the Lyme wars are chronic Lyme post-mortem studies, but mark my words: these will not be done.

Category:

Activism, Lyme

Podcast: When a Family Has Lyme

https://www.lymedisease.org/podcast-when-multiple-members-of-your-family-have-lyme-disease/

PODCAST: When multiple members of your family have Lyme disease

By Fred Diamond

10/16/23

It’s hard enough managing your own or just your child’s persistent Lyme symptoms, but what do you do when multiple people in your family have Lyme and other tick-borne illnesses? What kind of support do you need and where do you get it?

On this week’s Love, Hope, Lyme Podcast, I talk with Jessica Snajder, founder of Partner in Lyme, a non-profit that distributes funds to families in Connecticut for medical care. She discusses how her family coped when she was diagnosed with Lyme three years after they started caring for her teenage daughter.

“I founded Partner in Lyme based on the experience my oldest daughter had with her diagnosis, the complications of treating Lyme, and the financial aspects of treating Lyme and I felt that something good had to come out of our family’s experience,” she said. “I have also become a patient. I was diagnosed with Lyme and have been in treatment myself. It has evolved from my daughter’s care to a nonprofit and then to a family experience.”

“Partner in Lyme was really born out of that desire to make something good come out of a really bad situation. We give financial support to Lyme survivors in Connecticut to spend on anything that falls under the wellness umbrella that helps them heal in their body, spirit, and soul.”

I asked her if everyone in Connecticut understands the disease, since it was named for a city in the state.

She said that it is not the case.

“Residents of Connecticut still are operating under such misconceptions about what Lyme disease is and what it is not. Not enough doctors are screening proactively at yearly checkups. Pediatricians are not looking for signs. There’s a lot of missed opportunity to catch people early on in treatment and it’s very hard to find a doctor to work with and afford.”

What Do Those Who Love a Persistent Lyme Survivor Need to Know?

Jessica said Lyme survivors might need emotional, physical, and financial support.

“No matter who that person is, they need emotional support. Chronic Lyme is isolating, it’s physically debilitating, and it impacts who you are. There’s a grief process that the person with Lyme goes through.  You’re going to mourn the things that you can no longer participate in, and how your life has changed through no desire of your own.”

She also said that sometimes physical support takes precedence and can be different from person to person.

“Everyone in my family has had different physical issues. One of us has had more neurological issues, which has resulted in them not being able to drive. Someone else has mobility issues and that has led at times to wheelchair use or spending days on the couch until a flare passes,” she said.

“For myself, it was a little bit of both plus memory issues. My family thought I was multitasking or maybe on my phone when they were speaking to me. They would get frustrated with me when I wouldn’t respond, but once they realized that this wasn’t me not paying attention, this is my mind being affected by a bacteria, then it was easier to say, ‘all right, I’ll repeat that for you,’ or, ‘I won’t get aggravated if I think that you’re just not listening to me.’

Not surprisingly, financial support is often needed.

“Unless you are a wealthy individual, it’s almost impossible to do all the things that you would like to do and that your doctor may advise you to do,” she suggested.

She said that people don’t understand you just cannot go to your primary care physician for chronic Lyme. She estimated that the average patient spends about $50,000 out of pocket a year, if they can. Since most people cannot afford that, they’re not getting the treatment that they need, which means they need even more emotional support and even more physical support, because their bodies are not getting what they need to heal.

Complications When She Got Lyme Disease

Jessica said she was diagnosed with Lyme three years after her daughter was diagnosed.

“My oldest daughter was diagnosed in 2018, after seeing 10 doctors and struggling for about a year and a half to figure out what was wrong with her. That affected her senior year of high school into college. There was a lot of support that had to be given just to get her to finish school. I was driving her to college, waiting for her to finish her classes, and then driving her home.”

Jessica said being a caregiver was deeply entrenched in her day-to-day life and helped her process her own diagnosis. “I had the benefit of understanding this disease deeply. I was one of those classic long COVID cases but because I knew enough about Lyme, I knew it was not normal that my joints were hurting too.”

“My biggest takeaway was just the heartbreak for wanting things to go back the way they were and knowing that they can’t easily, and they may never go back. It’s reframing your life. As a 50-year-old woman, it’s easier for me to do that than as a 20-year-old young person,” she observed. “My heart just broke a bit more for her when I realized how significantly this takes a toll on your mental health. Looking for joy, trying to experience joy in a different way.”

Her Suggestion for Caregivers

When I asked her for advice for people who want to support Lyme survivors, Jessica said to avoid generalizing.

“When you share that you have Lyme, inevitably someone will say to you, “Oh, so-and-so had Lyme and they did X, Y and Z and they’re better. It’s no big deal. Well, yes, it’s a big deal. There are lot of misconceptions about how to treat Lyme and how not to treat Lyme. When you share these anecdotal stories of someone’s friend of a friend of a friend, it’s not received well.”

She advised not to minimize it and to try to think of it as if this person in your life was diagnosed with cancer. “Just cut off cancer and put in Lyme because the similarities between those two diseases are very strong and the quality of life for someone with Lyme consistently rates lower than someone who has been diagnosed with cancer.”

The biggest thing is to empathize with them. To not take anything that happens personally.

“If you are willing to set yourself aside and be selfless in your expression of how you love that person, whether you’re loving them as a friend or as a spouse, it’s humbling to set yourself aside and give that person what they need. It is a lesson in what love really is. Being compassionate, being kind, being selfless, seeking someone else’s well-being above your own.”

Learn more about Partner in Lyme here.

Click here to listen to all episodes of the Love, Hope, Lyme Podcast or on YouTube.

Fred Diamond is based in Fairfax, VA and can be contacted via Facebook. His popular book, “Love, Hope, Lyme: What Family Members, Partners, and Friends Who Love a Chronic Lyme Survivor Need to Know” is available on Amazon. The e-version of the book is always free to Lyme survivors. Send Fred a private message on Facebook for your copy.

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**Comment**

We spent about 15K per person about 10 years ago; however, our LLMD doesn’t test much as he just doesn’t feel they are accurate – plus they cost a lot of money. We stuck primarily with low cost antibiotics and when they were expensive we ordered from a Canadian pharmacy which gets most of these drugs from India making them much cheaper.  You have to plan a month in advance to do this successfully.  That said, we had to supplement with many things and supplements are rarely cheap.

The last I checked, an herbal treatment program runs about $300 a month per person unless you get the ground herb in bulk and make your own.

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