Archive for the ‘Activism’ Category

Deadly Germ Research Is Shut Down At Army Lab Over Safety Concerns

While I’ve already posted the information that research at the military’s leading biodefense center in Fort Detrick, Maryland is being suspended due to problems with disposal of dangerous materials,  https://madisonarealymesupportgroup.com/2019/08/07/fort-detrick-lab-shut-down-after-failed-safety-inspection-all-research-halted-indefinitely/, this article includes a list of select agents and toxins considered a potential severe threat to human and animal health.  Article found here:  https://ww w.nytimes.com/2019/08/05/health/germs-fort-detrick-biohazard.html

The institute, which has about 900 employees, studies germs and toxins that could be used to threaten the military or public health. It also investigates disease outbreaks and carries out research projects for government agencies, universities and drug companies, which pay for the work. 

The select agents and toxins list is found here. According to the NBACC website, the facility conducts research on pathogens for which there is no vaccine or treatment.  https://www.selectagents.gov/SelectAgentsandToxinsList.html

Interestingly, the following from the list are transmitted by ticks:

For more: https://madisonarealymesupportgroup.com/2019/07/31/tick-expert-admits-to-working-on-ticks-dropping-them-out-of-airplanes/

https://madisonarealymesupportgroup.com/2019/07/19/biological-warfare-experiment-on-american-citizens-results-in-spreading-pandemic/

https://madisonarealymesupportgroup.com/2019/07/21/got-15-minutes-the-officially-ignored-link-between-lyme-plum-island/

https://madisonarealymesupportgroup.com/2019/08/08/kris-newby-interview-the-real-news-network-is-the-rise-in-lyme-disease-due-to-weaponized-ticks/

https://madisonarealymesupportgroup.com/2019/08/04/lyme-disease-amendment-passes-house-tells-dod-ig-to-investigate-the-bioweaponization-of-ticks/

It is interesting the lab is suddenly closing down at the exact time an amendment passes the House telling the Department of Defense to investigate tick bioweaponization….

Burgdorfer, the discoverer of the Lyme bacterium, was a key member of this project team. He worked on weaponizing ticks and teamed up with fellow tick expert James Oliver at the Ft. Detrick bioweapons headquarters to develop ways to mass produce infected ticks so that they could be dropped from airplanes on enemy territory. These claims are backed up by interviews with these scientists, as well as with extensive government documentation from multiple reliable sources, all listed in BITTEN…(the book by Kris Newby).

Dr. Burgdorfer, “was engaged for 3 years on classified projects (Army) from which findings could not be published because of their impact on national defense.”  https://madisonarealymesupportgroup.com/2019/08/06/kris-newby-responds-to-telfords-criticism-of-bitten/

Another article on the lab assisting the FBI: http://www.progressive-charlestown.com/2017/06/just-hold-your-breath.html

Category:

Activism, research, Viruses

The Tell-Tale Sign Of Lyme Disease: Mother Shares Photo Of Her ‘Bullseye’ Rash After She Caught The Infection While Walking Her Dog in the Park

https://www.dailymail.co.uk/health/article-7300843/The-tell-tale-sign-Lyme-disease-Mothers-photo-bullseye-rash-walking-dog.html

The tell-tale sign of Lyme disease: Mother shares photo of her ‘bullseye’ rash after she caught the infection while walking her dog in the park

  • Kate Allen got tick bites on a summer’s day and three days later a rash appeared
  • She had 15 circular rashes, some which reached 12 inches (30cm) across
  • Other early symptoms of memory loss and fever led to a diagnosis of Lyme
  • Left untreated, the infection can spread to the organs and be deadly
  • Ms Allen was treated with antibiotics, but fears the infection remains 

By VANESSA CHALMERS HEALTH REPORTER FOR MAILONLINE

PUBLISHED: 30 July 2019

A mother has shared a photo of the ‘bullseye’ rash that proved to be a sign of her Lyme disease.

Kate Allen, 28, from Leicester, spotted raised bumps on her skin after walking her dog through long grass in the park in 30°C.

Three days later, she had expanding circular red areas on both legs with a clear centre forming a pattern, some reaching 12 inches (30 cm) across.

Feeling feverish, lethargic, and more forgetful, a doctor diagnosed a mild form of Lyme disease – an infection spread by ticks.

Ms Allen had circular red areas on both legs with a clear centre forming a pattern - also known as a 'bullseye' rash (pictured). She shared her photo on social media to raise awareness

 

The doctor prescribed Ms Allen a 21-day course of antibiotics (pictured) to treat a mild form of Lyme disease and stop it from spreading

Christine Jennings, 57, was just 32 when the bug latched onto her skin while she was playing with her young daughters.

Over the next week, the former interior designer and artist developed what she thought was a virus, with migraines, a rash and swollen joints.

However, it was just the beginning of a 25-year battle with Lyme disease, in which her health has deteriorated to the point of being bed-ridden.

A spokeswoman from Lyme Disease Action said: ‘Humid weather brings the ticks above ground looking for a meal and walkers and campers need to be aware of the risk of tick bites in shaded areas and long grass.

‘The majority of UK ticks are not infected with Lyme disease, and the risk of disease can be minimised by prompt removal of the tick, without squashing the body.

‘Awareness is key, and ticks should not deter people from enjoying the outside, with all the benefits it brings.’

According to the NHS, it is recommended to cover skin while walking outdoors and use insect repellent on clothes and skin.

WHAT IS LYME DISEASE?

Lyme disease is caused by a bacteria that is transmitted to humans through the bite of infected black-legged ticks.

The most common symptoms of the disease are fever, headache, fatigue and a skin rash called erythema migrans.

The disease can typically be treated by several weeks of oral antibiotics.

But if left untreated, the infection can spread to the joints, heart and nervous symptoms and be deadly.

WHAT HAPPENS WHEN YOU ARE INFECTED?

During the first three to 30 days of infection, these symptoms may occur:

  • Fever
  • Chills
  • Headache
  • Fatigue
  • Muscle and joint aches
  • Swollen lymph nodes
  • Erythema migrans (EM) rash

The rash occurs in approximately 80 per cent of infected people.

It can expand to up to 12 inches (30 cm), eventually clearing and giving off the appearance of a target or a ‘bull’s-eye’.

Later symptoms of Lyme disease include:

  • Severe headaches and neck stiffness
  • Additional rashes
  • Arthritis with joint pain and swelling
  • Facial or Bell’s palsy
  • Heart palpitations
  • Problems with short-term memory
  • Nerve pain

Source: CDC

__________________

**Comment**

Please remember that while a “bullseye” rash is indicative of Lyme disease, you can still be infected with Lyme without the rash. 

The article states, “The first signs are a distinctive circular rash.”  NOT TRUE. Many NEVER get the rash. The CDC information at the end of the article stating that 80% get the rash is WRONG. The ranges of those getting the rash are 25-80% – hardly a sure thing. https://madisonarealymesupportgroup.com/2019/02/22/why-mainstream-lyme-msids-research-remains-in-the-dark-ages/

The spokesperson from Lyme Disease Action is not helping anyone when they state, “The Majority of UK ticks are not infected with Lyme Disease…”

It only takes ONE infected tick to make you ill.  ONE. Prudence would err on the side of caution. Do not take this lightly.  Do not be lazy.

Look at each tick as a monster from hell that can suck the very life out of you.

Perhaps this spokesperson didn’t know Lyme is three times higher than estimated in the UK:  https://madisonarealymesupportgroup.com/2019/08/07/uk-lyme-disease-cases-three-times-higher-than-estimated/

https://madisonarealymesupportgroup.com/2019/08/01/news-video-lyme-more-common-in-uk-than-thought/

While this article hones in on Lyme, please remember that ticks are filled with numerous pathogens and Lyme is often one of many. Each of these pathogens requires different testing and different medication. This is often NOT a one pathogen illness:  https://madisonarealymesupportgroup.com/2018/10/30/study-shows-lyme-msids-patients-infected-with-many-pathogens-and-explains-why-we-are-so-sick/  Excerpt:

For the first time, Garg et al. show a 85% probability for multiple infections including not only tick-borne pathogens but also opportunistic microbes such as EBV and other viruses.

I’m thankful they included Bartonella as that one is often omitted but definitely a player.  I’m also thankful for the mention of viruses as they too are in the mix.  The mention of the persister form must be recognized as well as many out there deny its existence.

Key Quote:  “Our findings recognize that microbial infections in patients suffering from TBDs do not follow the one microbe, one disease Germ Theory as 65% of the TBD patients produce immune responses to various microbes.”

But there is another important point.

According to this review, 83% of all commercial tests focus only on Lyme (borrelia), despite the fact we are infected with more than one microbe.  The review also states it takes 11 different visits to 11 different doctors, utilizing 11 different tests to be properly diagnosed.  https://www.news-medical.net/news/20181101/Tick-borne-disease-is-multiple-microbial-in-nature.aspx?

And lastly, please remember that this 21 days of doxycycline is what mainstream medicine is going to give patients even when they admit freely that later symptoms of Lyme disease can involve the heart, brain, cause arthritis, neurological and cognitive issues, and nerve pain, and kill you. If you go onto develop those symptoms, they will tell you, “it’s all in your head, here’s an antidepressant, go home and be well.”  

https://madisonarealymesupportgroup.com/2017/06/30/child-with-lymemsidspans-told-by-doctors-she-made-it-all-up/

https://madisonarealymesupportgroup.com/2019/05/15/life-with-lyme-disease-a-womans-15-year-journey-to-diagnosis/  A doctor told her she was, “too pretty to be sick.”

https://madisonarealymesupportgroup.com/2017/09/21/its-all-in-your-head-until-finally-a-lyme-diagnosis/

https://madisonarealymesupportgroup.com/2019/02/16/lyme-is-all-in-your-head-a-wake-up-call-to-mental-health-professionals/

https://madisonarealymesupportgroup.com/2019/06/11/dr-eugene-shapiro-medically-unexplained-symptoms/

Regarding the geographic maps ruling like an iron curtain supposedly showing where ticks are or are not, or telling people the majority of ticks in their area aren’t infected:

https://madisonarealymesupportgroup.com/2019/04/22/its-just-crazy-why-is-lyme-disease-treatment-so-difficult-to-find-in-mississippi/

https://madisonarealymesupportgroup.com/2017/10/24/no-lyme-in-oklahoma-yeah-right/

https://madisonarealymesupportgroup.com/2016/09/24/arkansas-kids-denied-lyme-treatment/

https://madisonarealymesupportgroup.com/2018/05/31/no-lyme-in-the-south-guess-again/

https://madisonarealymesupportgroup.com/2018/08/21/our-battle-ongoing-lyme-disease-in-australia/

 

Category:

Activism, Lyme, Treatment

Lyme Disease: What It Is And Why Some Are Calling It The Next Pandemic

https://globalnews.ca/news/5728135/lyme-disease-what-it-is-next-pandemic/

August 8, 2019

By   Assignment Editor  Global News

It’s summer in North America and that means more people are outside enjoying the great outdoors. But, for some, simply heading out for a summer hike could make them sick.

There’s an increasing number of people across North America and around the world contracting Lyme disease. Lyme used to be considered an isolated disease found in North America and parts of Europe but it’s now found in 80 countries worldwide.

Its rise in North America has been particularly alarming. In the U.S. alone, the Centers for Disease Control says there are some 30,000 cases a year, but the CDC concedes the number is likely significantly higher than that. The Lyme Disease Association estimates the number is closer to a staggering 400,000 a year.

Some experts are sounding the alarm, calling it a pandemic.

“There are many countries around the world that are struggling with Lyme disease. It is a pandemic… There’s little doubt about that because it is so widely spread,” said Mary Beth Pfeiffer, an award-winning investigative journalist from upstate New York.

Pfeiffer began investigating Lyme disease when so many people in her community began getting sick and her initial research for the Poughkeepsie Journal eventually turned into a book, Lyme: The first Epidemic of Climate Change.

Health effects of Lyme

Lyme disease is caused by a bacteria called Borrelia burgdorferi that the tick contracts from hosts like deer or rodents. It’s then passed on to humans after a walk in tall grass or a hike in the wilderness.

“The bacteria is called a spirochete because of its spiral shape, and that gives it a great amount of motility so it’s able to move around in your system and throughout your tissue quite readily,” said Jim Wilson, the founder of the Canadian Lyme Disease Foundation (CanLyme).

The good news is that if a tick bite is caught early, within the first few hours or weeks, a course of antibiotics can pretty much eliminate the disease. But if it isn’t, that spirochete can wreak havoc on the body.

“Once you miss the opportunity to treat it acutely, the bacteria can disseminate from the site of tick bite,” said Dr. Kieran Moore, the principal investigator with the Canadian Institute of Health Research-funded Canadian Lyme Disease Research Network.

“It can be spread to your joints and cause rheumatological Lyme or it can spread into nerve tissue and cause nerve tissue damage, or it can attach to the muscle of the heart and the nerve conduction system of the heart and cause all types of different cardiac presentations.”

Unfortunately, many cases of Lyme aren’t caught early enough and patients continue to deteriorate without knowing why.

“I just kept deteriorating with really weird heart palpitations and cognitive issues like unable to concentrate, slurred speech, trouble swallowing, light sensitivity, sound sensitivity and just a rapid deterioration to the point where I had to come home from work,” said Barry Philpott, a Lyme disease patient.

Why it’s so hard to get treatment

Philpott isn’t the only patient who describes a decline in health without any explanation before finally getting a Lyme disease diagnosis. It’s virtually never the first thing a doctor looks for and Moore says that’s part of the problem.

“We need significant work to educate physicians both in the front lines — emergency medicine and primary care — as well as our specialist colleagues regarding the myriad of signs and symptoms that Lyme disease can present as,” said Moore.

The other issue: there is still no completely reliable test for Lyme.

“We know that the current diagnostic tests for Lyme disease are insensitive,” said Moore.

These diagnostic tests are particularly insensitive in the early stages of the disease, which means people could be going undiagnosed or misdiagnosed, leaving them vulnerable. Physicians and advocates for patients say this is the time to be especially vigilant.

“If someone presents in June, July or August just with undifferentiated fever, chills, muscle aches, headaches, neck stiffness… think Lyme disease,” said Moore.

Lyme and why it isn’t going away

Lyme isn’t going away. If anything, it’s getting worse.

“It has spread very quickly from the early ’80s onwards and we think that’s associated with climate change,” said Moore.

Pfeiffer, the investigative journalist, agrees.

“There are a number of things that are driving this epidemic and climate is one of the prime ones,” Pfeiffer said. “We’re certainly seeing that it’s warmer and it’s more humid in many places, especially in Canada, in the U.S., in the northeast and the midwest England.”

In her research, Pfeiffer also found a general lack of alarm over the disease, which she says is part of the reason Lyme has gone under-diagnosed and under-treated, especially in North America.

“We don’t have a handle and we need to do the work that we haven’t done,” she said. “I often compare Lyme disease to AIDS. The AIDS virus was identified in 1983. The Lyme disease bacterium was identified in 1981.

“The number of clinical trials that have been done for AIDS number about 11,000. You look at clinical trials for Lyme disease, there’s about 60. When I looked up those numbers it amazed me. Sixty trials for Lyme disease, 11,000 for AIDS.

“I’m not saying that AIDS did not deserve the attention it got, but Lyme disease is not getting the attention it deserves.”

Solutions to combating Lyme disease

Experts agree that it’s incumbent upon the medical community to start treating Lyme disease with more urgency. Since 2017 there has been a slight increase in funding for research in Canada. But other countries, including the U.S. are slower. Canada has also started educating physicians on recognizing signs and symptoms. However, it’s also important for people to educate themselves.

“Number one, educating people about the risk. Wherever you are going camping this year you should know, are ticks present and is the agent that causes Lyme disease present in those ticks, and you should be taking the appropriate precautions,” Dr. Moore said.

“Wear light-coloured clothing so you can see the ticks if they drop off the leaves or grasses and fall on to you. Use a repellant like DEET or Picaridin to repel the ticks off your clothing or skin.”

The message: until there is more research and more treatment available, prevention is the best medicine.

— With files from Ely Bahhadi

__________________

**Comment**

Again, the very warmer winters Pffeiffer writes about in her book are lethal to black-legged ticks and the climate has nothing to do with this:  https://madisonarealymesupportgroup.com/2018/11/07/ticks-on-the-move-due-to-migrating-birds-and-photoperiod-not-climate-change/

As to humidity – this is why ticks hide under snow and leaf litter. This is one of the reasons warmer winters are actually worse for tick survival. They are extremely adaptive to weather and can survive nearly anything but fire:  https://madisonarealymesupportgroup.com/2016/01/20/polar-vorticks/

https://madisonarealymesupportgroup.com/2019/07/18/frequent-prescribed-fires-can-reduce-risk-of-tick-borne-diseases/

Ontario officials have been called out on shoddy, biased research essentially ignoring previous research and utilizing a flawed model to predict a gradual northern migration of ticks.  The thing is, ticks already existed in those areas:   https://madisonarealymesupportgroup.com/2019/06/17/ontario-public-health-officials-called-out-on-shoddy-biased-research-utilizing-an-erroneous-climate-change-model-to-program-a-futuristic-tick-problem/

Again, just because someone says something over and over doesn’t make it true.

Category:

Activism, Lyme, Ticks

IDSA Extends Comment Period & Allows Downloads

https://www.lymedisease.org/idsa-extends-lyme-deadline/

TOUCHED BY LYME: IDSA extends comment period and allows downloads

By Dorothy Kupcha Leland

Aug. 10, 2019

IDSA extends comment period

Hours before its self-imposed deadline of August 10, the Infectious Diseases Society has given a brief reprieve to frustrated patients trying to comment on the IDSA Lyme guidelines.

The new deadline is September 9.

Here’s some background on what transpired:

In June, the IDSA released a draft of its new Lyme treatment comments and supposedly invited the patient community to comment by August 10.

I say “supposedly,” because the organization devised a complicated procedure for reading and commenting that seemed designed to discourage people from even trying.

It was like requiring potential commenters to keep one hand tied behind their back while wearing a blindfold.

As Dr. Judy Stone, writing for Forbes.com, noted recently:

The IDSA has made review more difficult by only offering the draft online. It is “protected,” so one cannot even cut and paste lines into a reply or commentary, nor highlight passages for review. Nor can one search the document by keyword. Forbes and I have asked for a pdf that can be annotated, to make review and comment easier, and they have refused. Their refusal makes me feel they really don’t want people to comment on their 81-page draft and 203 page supplement.

And that’s only to READ the document. Submitting comments also requires an onerous process.

At the last minute, on August 7, volunteer Lyme activist Lucy Barnes expressed her frustrations in an email to the IDSA, the American Academy of Neurology (AAN), and the American College of Rheumatology (ACR). (The three organizations sponsoring the guidelines.)

She called the “daunting task” of reading and commenting “unfair to all interested parties, especially the disabled.”

She also said:

Many patients across the country simply cannot participate in this process and complete the project on time due to the severity of their tick-borne disease related illnesses, their resulting disabilities and/or the effort and energy involved.

It places an undue burden on them, essentially silencing countless voices across the country and even worldwide…. [When copying comments into the IDSA’s required Survey Monkey form] the formatting becomes so jumbled (paragraphs pushed together, no center for titles, spacing problems, etc.) that it would take hours to try to correct it once inserted into the form and even then I am still not sure it will be readable.

My vision is too poor to be able to do this additional work in the tiny space allotted on the form in the small font that automatically appears, and my energy levels are already strained attempting to complete my project on time; therefore, I am not able to use the only option you’ve provided to submit comments.

Lo and behold, on August 9, the IDSA extended the cutoff date for comments–and decided to eliminate the “protections” on the document. An email to Barnes stated:

The deadline to submit comments is now Sept. 9, 2019.

In addition to the deadline extension, the format of the draft guidelines posted on the public comment website has been changed to allow readers to search, download and print the document, ensuring that anyone interested in submitting comments is able to access the draft guidelines and have appropriate time to review and comment.

So, there you go. After weeks of stonewalling anyone who complained about the process, finally the IDSA has agreed to lessen the burden a bit. However, the problematic commenting procedure remains unchanged.

LymeDisease.org and a coalition of partner organizations did submit comments yesterday, a day before the original deadline. Our response totaled some 50 pages—and took the team about three hours to upload via the Survey Monkey form.

We’ll be sharing that document with you, along with related analysis, in the coming days. Stay tuned.

Click here to read Lucy Barnes’ email exchange with the IDSA/AAN/ACR. (Scroll down to the bottom of the page for most recent additions.)

Click here for the IDSA’s portal for Lyme comments.

Previous blog: The IDSA’s insincere request for guidelines feedback

TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s 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.

__________________

For more:  https://madisonarealymesupportgroup.com/2019/08/11/natcaplymes-response-to-updated-lyme-disease-guidelines-states-they-are-based-on-outdated-and-discredited-studies/

https://madisonarealymesupportgroup.com/2019/07/09/idsa-lyme-disease-treatment-management-business-as-usual-leaves-those-with-persisting-symptoms-to-suffer-die/

https://madisonarealymesupportgroup.com/2019/06/27/idsa-aan-acr-2109-draft-lyme-guidelines-public-comments-allowed-until-aug-10-2019/

https://madisonarealymesupportgroup.com/2019/07/22/idsas-insincere-request-for-guidelines-feedback/

Category:

Activism, Lyme, Uncategorized

NatCapLyme’s Response to Updated Lyme Disease Guidelines States They are Based on Outdated and Discredited Studies

https://natcaplyme.org/psla/in-no-way-does-natcaplyme-endorse-the-adoption-of-the-idsas-updated-lyme-disease-guidelines/?

In no way does NatCapLyme endorse the adoption of the IDSA’s updated Lyme disease guidelines!

NatCapLyme Submitted Its Response to the IDSA Regarding Their Updated Lyme Disease Guidelines During the Public Comment Period

August 7, 2019

The National Capital Lyme Disease Association (NatCapLyme) is submitting this letter as the organization’s official response to the Infectious Diseases Society of America’s (IDSA) public comment period regarding its draft of their updated Lyme disease guidelines.

Before addressing the guidelines, we would like to comment on the format in which the IDSA provided access to the draft guidelines for review. Specifically, while the document was posted online, the IDSA restricted the ability to download or print the document, thereby requiring the reviewer to read the entire publication online. To expect a reader to fully analyze such a comprehensive and complex document ONLY online was an obvious ploy by the IDSA to make the review of this material as difficult as possible. The Lyme community sees through this disingenuous behavior, as did Forbes Magazine,which published an article on the proposed draft guidelines. After the IDSA denied a request from Forbes and the article’s author to receive a PDF version of the draft guidelines, the author wrote, “Their refusal makes me feel they really don’t want people to comment on their 81-page draft and 203 page supplement.”Engaging in such underhanded behavior distracts from their transparency and greatly harms the relationship with the Lyme community and reinforces the belief that the IDSA is not in touch with or cares about the growing number of patients suffering from Lyme and other tick-borne diseases.

Regarding the proposed updated guidelines, there appear to be only minor changes from the IDSA’s previously published and decades old guidelines.  The new draft is still based on outdated and, in some cases, discredited studies. Patient groups have clearly demonstrated that thousands who suffer from Lyme and associated tick-borne diseases are losing their battle for health and the pursuit of happiness due to the failure of our national and professional institutions to address this growing epidemic in any meaningful way. To paraphrase the great physician, philosopher and scientist Moses Maimonides: there is no point to science without progress.

Meanwhile, the Centers for Disease Control and Prevention (CDC) and National Institutes of Health (NIH) continue to divert their focus to the highly dubious goal of creating a vaccine before developing a reliable test for Lyme or classifying all the strains of the disease. Without these prerequisite measures, the production of an effective vaccine is significantly compromised. Of course, NatCapLyme would like to see a “safe and effective” vaccine brought to market. However, the current effort narrowly focuses on a few strains of Borrelia in a rush to certify a vaccine. This offers only a limited public-health benefit and harbors a serious potential health risk by suggesting to those vaccinated that they are protected from all strains of Lyme and co-infections.

NatCapLyme is a nationally recognized Lyme advocacy organization that continues to hold face-to-face support group meetings. We also have a telephone hotline to take calls from those seeking help regarding Lyme and tick-borne diseases, and each day we are on the phone for hours providing information, references and support.

While the IDSA continues to stand behind outdated and biased research, we see and hear what is really happening across America.

Standing on the front lines of this growing health epidemic, we are told the same story time and time again. At staggering rates, patients report being misdiagnosed, inadequately treated, or worst of all, dismissed by the medical community as “hypochondriacs.” In reality many of these individuals have real bacterial, viral, or parasitic infections ravaging their bodies resulting from a tick bite. Children, who are most at risk, are losing their childhoods and may spend their entire lives chronically ill, never to appreciate one day of good health or happiness. Once healthy adults are losing their livelihoods, because they are now too sick to continue working. Families are bankrupted by escalating medical costs as they try to find an answer to their multi-systemic symptoms and illness.

A 2015 research study published by the Johns Hopkins Bloomberg School of Public Health found that Lyme disease costs the U.S. health care system between $712 million to $1.3 billion to treat each year.

Again, we are only talking about Lyme disease, not other co-infections. Add to that the indirect costs, such as lost wages and taxes, and the total cost of Lyme disease is in the billions each year.

NatCapLyme sees that the updated Lyme disease guidelines proposed by the IDSA are just status quo and woefully inadequate to address the true extent of the tick-borne disease epidemic reeking havoc across the U.S. With an estimated 427,000 new cases of Lyme disease contracted each year, as published by the CDC, and with little progress in the identification, diagnosis and treatment of tick-borne illnesses, NatCapLyme believes that an increasing number of people will become infected and may subsequently remain sick perhaps indefinitely. In reality, thousands of U.S. citizens are being stricken with a potentially life-long debilitating medical condition that is not, or is barely, recognized by the IDSA. Based on the proposed draft guidelines, we believe that the status quo will be perpetuated for years to come.

Tick-borne illness, especially in the chronic form, will continue to be discounted by the vast majority of physicians, government policy makers and researchers as the IDSA clings to the belief that Lyme disease is hard to catch and easy to treat.

Unfortunately, the Lyme community’s past experience with the IDSA demonstrates the serious challenge of achieving significant change. Little progress is made when a professional medical society that promulgates guidelines to diagnosis and treat tick-borne diseases only recognizes and supports the same old cast of researchers who repeatedly test the same old ideas. In an article published by the Washington Post titled https://www.washingtonpost.com/outlook/why-we-shouldnt-take-peer-review-as-the-gold-standard/2019/08/01/fd90749a-b229-11e9-8949-5f36ff92706e_story.html?noredirect=onWord did not find any entries for your table of contents. It states that,

“peer review can act as a shield to protect the status quo and suppress research viewed as radical or contrary to the established perspectives of referees.”  Moreover, “groundbreaking studies by Sir Frank MacFarlane Burnet, Rosalind Yalow, Baruch Blumberg and others were rejected by peer reviewers, yet later led to Nobel Prizes.”

We believe that the key to any progress lies in advancing research in all aspects of the diseases, especially in the development of better diagnostic tools for the detection of all tick-borne diseases. Clearly these guidelines do not do that. We appeal to the IDSA and the research community to expand its focus on emerging and promising research that comes from fresh and new perspectives. It should bring together the best minds and best theories of ALL parties, and require that ALL theories be examined and considered. NatCapLyme believes that true solutions to the dilemma of Lyme and tick-borne infections may be found only when all parties are willing to consider the view that each party holds. Perhaps if we all work together we can forever end this terrible pandemic.

In conclusion, NatCapLyme in no way endorses the adoption of the IDSA’s updated Lyme disease guidelines. The patient community is extremely angry about the lack of scientific and medical progress with respect to Lyme and our masses are growing by the tens-of-thousands each year. This problem is not going away until all parties are invested in creating real solutions that benefit all patients, and society as well. Despite being sick, in pain, exhausted, frustrated and financially drained, we are committed to this cause and will not stop until we regain our health, halt this epidemic, and ensure that these terrible tick-borne diseases do not burden future generations.

https://natcaplyme.org

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For more:  

https://madisonarealymesupportgroup.com/2019/06/27/idsa-aan-acr-2109-draft-lyme-guidelines-public-comments-allowed-until-aug-10-2019/

https://madisonarealymesupportgroup.com/2019/07/09/idsa-lyme-disease-treatment-management-business-as-usual-leaves-those-with-persisting-symptoms-to-suffer-die/

https://madisonarealymesupportgroup.com/2019/07/22/idsas-insincere-request-for-guidelines-feedback/

Category:

Activism, Lyme, Uncategorized