Archive for the ‘Lyme’ Category

The Thorny Question of (No) Insurance Coverage For Lyme

https://www.lymedisease.org/touched-by-lyme-the-thorny-question-of-no-insurance-coverage-for-lyme/

TOUCHED BY LYME: The thorny question of (no) insurance coverage for Lyme

By Dorothy Kupcha Leland

Aug. 13, 2021

People suffering from persistent Lyme disease typically make a lot of unpleasant discoveries early on. For instance, how many different places your body can hurt. And how exhausting even simple exercise can be.

But the pain and exhaustion isn’t just physical. It’s also financial. Turns out, your regular doctor probably can’t help you—and your health insurance likely won’t pay for anybody who can.

The topic is frequently discussed in Lyme patient support groups, whether online or (back in the day) in-person.

But the issue of lack of insurance coverage for Lyme disease treatment is rarely mentioned in the mainstream news media.

Therefore, I was pleasantly surprised to see the following headline and article in Business Insider, an online news publication with a worldwide readership.

Reporter Heather Schlitz presents a pretty accurate picture of how Lyme patients get little to no support from their health insurance companies.

Profiling a patient from Northern California, she notes: “Over three years, she estimates she paid around $100,000 for antibiotics and other medications, an amount that drained her and her husband’s savings account and retirement funds, but that managed to rein in the avalanche of symptoms.”

Schlitz explains that insurance companies often refuse to cover the costs of treatment because of the Infectious Diseases Society of America’s stance on the subject. She writes:

“Anthem, one of the largest insurers in the country, considers long-term antibiotic treatment for Lyme disease ‘medically unnecessary,’ which means that if an Anthem member’s Lyme disease symptoms aren’t cured with a few weeks of antibiotic pills, their health plan would likely not pay for additional treatment.”

Schlitz continues:

“It can be difficult to pin down what kind of treatment insurance companies will cover, because much depends on the state the patient lives in and how much work a doctor puts in to get insurance to approve a drug, Lorraine Johnson, the head of LymeDisease.org, a Lyme disease advocacy group, said. But because the best method for treating the disease’s long-term effects remains elusive, insurers should rely on clinical judgement of doctors rather than opting not to cover treatment at all, Johnson said.”

Not covered in this article is Torrey v. IDSA, a lawsuit originally brought by patients against the IDSA, its Lyme guideline authors and eight insurance companies.

As it now stands, the insurance companies have all settled and the individual authors have been dropped from the suit. According to journalist Mary Beth Pfeiffer, who has been following the case, “Pending approval by the court, TORREY v. IDSA is now an anti-trust lawsuit against a single defendant: The Infectious Diseases Society of America.”    See her website for more information about Torrey v. IDSA.

Click here to read the article in Business Insider.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s Vice-president and 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.

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For more:

For insurance coverage bills to be effective, it is imperative that doctors are allowed freedom to treat patients as they seem fit – without medical governing boards and state medical boards continually threatening them and without insurance companies hiding behind the faulty parameters being set by public health authorities.  We are seeing the exact same problem with the treatment of COVID.

Category:

Activism, Lyme

Author of New Book on Lyme Disease Says There Are Lessons in COVID-19 Pandemic

https://www.cbc.ca/news/canada/new-brunswick/lyme-disease-new-book-covid-19-1.6115145

Author of new book on Lyme disease says there are lessons in COVID-19 pandemic

St. Stephen journalist’s book Lyme Disease in Canada shows the frustration of Lyme patients
Steven Webb · CBC News · 

Black-legged ticks, also known as deer ticks, are the species tick species most likely to carry Lyme disease. (Submitted by Vett Lloyd)

When science writer and journalist Brian Owens was approached by a publisher to write a book about Lyme disease, he was soon struck by how the history of the disease had some parallels to the COVID-19 pandemic.

The St. Stephen resident set out to write a resource guide to the tick-borne disease, but writing the book in the midst of the global outbreak brought a new perspective on his subject.

“There kept being reasons to mention COVID, beyond just marketing,” Owens said in an interview from his home.

And while the COVID-19 pandemic isn’t the focus of the book Lyme Disease in Canada, Owens said there are lessons from the past 18 months that could help people battling Lyme disease.  (See link for article)

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**Comment**

A few points:

  • While the author states people struggle to get diagnosed and treated, he also states it’s “changing.”  I would disagree.  Very little has in fact changed, except more and more people are getting infected.
  • He points out that there is a completely different attitude by the public health community regarding people with long-term COVID, as they are immediately taken seriously, and are seen as partners, unlike long-term Lyme/MSIDS patients.
  • The author and a tick researcher in the article think the “effectiveness of COVID ‘vaccines’ could create more interest in a Lyme vaccine.” They obviously haven’t read anything but vaccine manufacturer propaganda as these COVID injections which aren’t vaccines aren’t effective at all.  Break-through infections are only rising and more and more are dying from COVID that are fully “vaccinated.”
  • The author states that the previous Lyme vaccine was a “victim of strong anti-vaccine” reaction and that the company pulled it because it wasn’t profitable.  Again, he must have missed the details of thousands of people struggling with debilitating Lyme-like symptoms after this vaccine. (People to this day contact me explaining they are still suffering from the vaccine’s effects). A new jab is in the works.
  • The tick researcher predictably blames climate change for growing tick populations.  She must not be aware of her own countryman’s work that proves this tenet to be false.  Ticks are impervious to weather.
  • I won’t be buying this book.

Category:

Activism, Lyme, vaccines, Viruses

Tick-borne Diseases in the Time of COVID

https://www.recorder.com/Tick-borne-diseases-in-the-time-of-COVID-41916546

My Turn: Tick-borne diseases in the time of COVID

Mary Carey STAFF FILE PHOTO

By MARY CAREY
Published: 8/18/2021

In early July, I was hoping my husband Brian, who was feeling uncharacteristically under the weather, would bounce back to his hardy self soon, so we could rent an AirBnB on a lake or a beach for a few days.

By the end of the month, I just wanted him to get better.

We were increasingly anxious to find out what was causing his pillow-soaking sweats, violent chills, head and neck aches and extreme fatigue as one week, then a second, and half of the third week went by. Despite two visits to an urgent care clinic, a diagnosis of cellulitis and an antibiotic, he was getting worse. An emergency room doctor at Cooley Dickinson Hospital, for whom we are deeply, deeply grateful, eventually identified the culprit. But it was a confounding journey leading up to the revelation. Living in the shadow of COVID, as we all are, didn’t help.

The idea that Brian could be one of the unlucky minority of the fully vaccinated to get a breakthrough infection was always on his mind. He had had three COVID tests which all proved negative — a relief on the one hand, he said, but a little bittersweet, because if he had COVID, at least we would know what was wrong with him. (See link for article)

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**Comment**

This article is important for numerous reasons.

  1. Not everything is COVID
  2. I find it interesting that these symptoms all cropped up after he’d been “fully vaccinated” for COVID. Vaccines purposely lower the immune system so that it then mounts an immune response to whatever is injected into the body. This vaccination chain of events has reactivated latent tick-borne infections in people.  
  3. Having swollen and red toes, elevated liver enzymes, and erratic temperature fluctuations are all fairly hallmark symptoms of tick-borne illness.
  4. Cellulitis is a common misdiagnosis.
  5. The doctor thankfully recognized the symptoms and commented that they had seen a lot of tick-borne diseases – not just Lyme at the hospital this summer.
  6. Blood tests revealed the patient had Babesia, Anaplasmosis, and Lyme disease. This guy was lucky and won the jack-pot.  Patients are often seronegative due to abysmal testing and never get diagnosed.
  7. This man needs lengthy follow-up as all of these infections are notoriously persistent.

Category:

Activism, Anaplasmosis, Babesia, Lyme, vaccines

With Three Invasive Tick Species Thriving in Connecticut, State Scientist Warns of Major Public Health Hazard

https://www.courant.com/news/connecticut/hc-news-ct-more-ticks-20210816-eafwrhehkbhspacc7r5qrw4m4m-story.html

With three invasive tick species thriving in Connecticut, state scientist warns of major public health hazard

By 
HARTFORD COURANT 
AUG 16, 2021 
Stratford, Ct. - 08/13/2021 - Dr. Goudarz Molaei, with Connecticut's Agricultural Experiment Station, searches for ticks trapped on a canvas dragged through shoreline vegetation. Photograph by Mark Mirko | mmirko@courant.com
Stratford, Ct. – 08/13/2021 – Dr. Goudarz Molaei, with Connecticut’s Agricultural Experiment Station, searches for ticks trapped on a canvas dragged through shoreline vegetation. Photograph by Mark Mirko | mmirko@courant.com (Mark Mirko/The Hartford Courant)

State scientist Goudarz Molaei pulled a square of cloth through brush and grass on the Stratford coast recently, then stopped and pointed to a crawling smear of larvae on the white fabric.

The tiny arachnids were either Gulf Coast or lone star ticks, two of three invasive species, along with the Asian long-horned tick, that have recently established footholds in Connecticut.

First seen only in pockets near the coast, the blood-sucking, disease-carrying ticks have spread into other parts of the state. Compared with past years, many more worried residents and visitors have submitted ticks to the Connecticut Agricultural Experiment Station, mostly deer ticks that may carry Lyme disease, Molaei said. The tally so far in 2021 is 4,700 tick submissions to the testing laboratory, compared with a total annual average of 3,000 submissions.

Milder winters and warmer temperatures overall are helping the ticks survive and thrive in Connecticut.

“This is going to be a major public health concern in the near future, if it is not already,” Molaei said.  (See link for article)

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**Comment**

Important takeaways:

  • Previously only .2% of submitted ticks were lone star ticks which increased to 4.2% this year. They transmit ehrlichiosis, STARI, spotted fever rickettsiosis, tularemia, Alpha-gal allergy, and Heartland and Bourbon Viruses.
  • The researcher states that it’s a matter of time before the entire state of Connecticut will be infested with Asian long-horned tick – the tick that can reproduce by cloning. It is supposedly less attracted to human skin but can spread diseases that make both animals and humans seriously ill.
  • The Gulf Coast tick overwintered successfully in Connecticut but currently is limited to coastal areas.  Thirty percent tested there were infected with rickettsiosis, which is similar to but less serious than Rocky Mountain Spotted Fever.
  • The deer tick, or blacklegged tick transmits Lyme disease and is active any time temperatures are above freezing.  All life stages bite humans.
  • The following percentages of ticks were sent to the Experiment Station this year:
    • 72.8% deer ticks (32% were positive for Lyme, 10% for Babesia, 4% for Anaplasmosis – and 2% tested positive for at least 2 disease agents concurrently)
    • 23.1% American dog ticks
    • the rest were lone star ticks

Category:

Alpha Gal Meat Allergy, Anaplasmosis, Babesia, Ehrlichiosis, Lyme, research, Rickettsia, Testing, Ticks, Tularemia, Viruses

Lyme Disease: A Persistent Infection

https://danielcameronmd.com/lyme-disease-persistent-infection/

LYME DISEASE: A PERSISTENT INFECTION

woman with lyme disease infection holding her head
Chronic manifestations of Lyme disease have been described for more than three decades. In 1970, Logigian and Steere described 27 patients with chronic neurologic Lyme disease, who had been ill for up to 14 years. Some improved, some relapsed and others remained ill. [1]
By 
 

There are multiple studies indicating that Lyme disease can result in a persistent infection, causing chronic symptoms that may require treatment with extended courses of antibiotics. The National Institute of Health (NIH) conducted three Lyme disease trials, which validated the existence and severity of chronic manifestations of Lyme disease.2-4  The study’s patients were ill for years, an average of 9 years in one trial. Three of the four trials confirmed that treatment with antibiotics can fail. These patients reported severe fatigue, impaired cognitive function, pain and poor function despite antibiotic treatment.5

Some doctors have dismissed the possibility that a persistent tick-borne infection might underlie a patient’s illness,6 while other doctors believe that Lyme disease may cause a persistent infection and be an underlying cause of illness.7

Dr. Shor and colleagues summarized potential mechanisms for a persistent infection.

“Potential survival mechanisms of Lyme disease persistence include:

  • immune evasion
  • immune modulation
  • presence of subpopulations of persister cells
  • physical seclusion—within cells, collagen-rich tissues, and immunologically protected sites (CNS, joints, and eyes), is one method of immune evasion
  • biofilm generation is another recognized form of physical seclusion. Published reports document that Borrelia burgdorferi can produce biofilm in vitro and examination of infected human tissues demonstrated B. afzelii and B. burgdorferi embedded in biofilm.” [7]
Editor’s perspective: Patients are finding it increasingly difficult to locate a doctor who is willing to at least consider the presence of a persistent infection.
Related Articles:

Chronic neurological Lyme disease or co-morbid conditions?

What is chronic Lyme disease?

Long-term problems for some Lyme neuroborreliosis patients

References:
  1. Logigian EL, Kaplan RF, Steere AC. Chronic neurologic manifestations of Lyme disease. N Engl J Med. Nov 22 1990;323(21):1438-44. doi:10.1056/NEJM199011223232102
  2. Klempner MS, Hu LT, Evans J, et al. Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease. N Engl J Med. Jul 12 2001;345(2):85-92. doi:10.1056/NEJM200107123450202
  3. Krupp LB, Hyman LG, Grimson R, et al. Study and treatment of post Lyme disease (STOP-LD): a randomized double masked clinical trial. Neurology. Jun 24 2003;60(12):1923-30. doi:10.1212/01.wnl.0000071227.23769.9e
  4. Fallon BA, Keilp JG, Corbera KM, et al. A randomized, placebo-controlled trial of repeated IV antibiotic therapy for Lyme encephalopathy. Neurology. Mar 25 2008;70(13):992-1003. doi:10.1212/01.WNL.0000284604.61160.2d
  5. Rebman AW, Aucott JN, Weinstein ER, Bechtold KT, Smith KC, Leonard L. Living in Limbo: Contested Narratives of Patients With Chronic Symptoms Following Lyme Disease. Qual Health Res. Mar 2017;27(4):534-546. doi:10.1177/1049732315619380
  6. Wormser GP, McKenna D, Karmen CL, et al. Prospective Evaluation of the Frequency and Severity of Symptoms in Lyme Disease Patients With Erythema Migrans Compared With Matched Controls at Baseline, 6 Months, and 12 Months. Clin Infect Dis. Jan 23 2020;doi:10.1093/cid/ciz1215
  7. Shor S, Green C, Szantyr B, et al. Chronic Lyme Disease: An Evidence-Based Definition by the ILADS Working Group. Antibiotics (Basel). Dec 16 2019;8(4)doi:10.3390/antibiotics8040269

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For more:

If you haven’t signed Lyme Advocate Carl Tuttle’s petition, please do:  https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/29506824?  The petition is calling for a congressional investigation of the CDC, IDSA, and ALDF for their mismanagement of Lyme/MSIDS – for their long denial of chronic Lyme and the damage it causes.  This denial has played out in patients not getting diagnosed and treated properly with long-term antimicrobials due to abysmal serology tests which are wrong 86% or more of the time.  It also plays out in the fact doctors who dare to treat outside the unscientific and antiquated CDC Lyme guidelines are hunted down and persecuted, making doctors afraid to treat patients.

The same government funded institutions behind the Lyme debacle are currently also behind the COVID debacle and need to be held accountable.  They have done many of the same things which has resulted in patients not getting the care they need.  These corrupt public health ‘authorities’ are the problem.

Category:

Lyme, research