Archive for the ‘Lyme’ Category

How to Co-Exist With Wisconsin’s Ticks

https://mywisconsinwoods.org/2020/05/27/how-to-co-exist-with-wisconsins-ticks/

By Denise Thornton

If you plan to be out in the woods or live next to woods, don’t be too quick to trade long pants and long sleeves for shorts and a tee shirt as the weather warms. You need to protect yourself from the ticks that are starting to emerge. Tick bites are possible year-round, but ticks are most active April through September.

Many types of ticks never feed on people. In Wisconsin, the two most common ticks that do are the wood tick, which is not a health concern here, and the black-legged tick (Ixodes scapularis), commonly known as the deer tick, which can transmit several serious diseases including Lyme disease and, more recently, anaplasmosis, which can start with symptoms like fever and nausea and in some cases, progress to organ failure.

Deer tick (left) and Wood tick (right). Photo courtesy of prevention.com

Wisconsin is Tick Heaven

The Upper Midwest and the northeastern states are hardest hit by Lyme disease, and the numbers in Wisconsin are rising. According to the Wisconsin Department of Health Services, Wisconsin had 3,105 estimated cases in 2018.

Once considered to be a north woods hazard, deer ticks are now found in every county of the state. Deer are an important blood source for adult ticks, and in 2018 overwinter deer densities in the state varied from three to over 60 per square mile. The abundant woodlands interspersed with agriculture throughout much of central and southwestern Wisconsin creates high quality deer habitat.

“There’s been a change in the past 25 years,” says Dr. Susan Paskewitz, chair of the UW-Madison Department of Entomology. Ticks thrive in moist, shady forested environments, and love our increasingly mild winters. “We find them in pine forests, mixed forests and deciduous forests.”

Paskewitz has sampled along the woody edges and out into the yard in neighborhoods in Eau Claire and near Delton.

“Of 90 houses tested, by the end of June, 80 percent of them had at least one deer tick in the area we were sampling. Most were within three to six feet of the woods,” Paskewitz continued, “but a few were found in bright, open, mowed lawn. I don’t think they live long there, but they were making their way out there, so if you are walking out to get your mail without your shoes on, you might pick up that particular tick.”  (See link for article)

____________________

**Comment**

They say a picture‘s worth a thousand words.  The picture of this tick in the gum line in the mouth of a dog shows how durable and tenacious ticks are.

A few points for consideration:

  • Migrating birds, rodents, deer, lizards, and human movement are transporting ticks everywhere.  For far too long doctors have been looking at maps to diagnose people.  Trust me, ticks are virtually everywhere and adapt to weather conditions quite easily.
  • If I’ve written this once, I’ve written it 1,000 times – many people never see the tick or the rash and research shows the rash is highly variable – certainly not a sure thing.  
  • For more on tick prevention:  https://madisonarealymesupportgroup.com/2019/04/12/tick-prevention-2019/  I’m happy to report I saw some controlled burning in ditches as I was driving North today.  This has proven to reduce tick populations significantly.  I wish more of this was happening.
  • Regarding the section on if you find a tick bite: while it’s true that removing the tick as soon as possible is step #1, step #2 is getting prompt treatment as the “wait and see” approach has doomed patients to decades of suffering.  Demand immediate prophylactic treatment for each and every tick bite.  Trust me – whatever mild side effects and inconvenience a month or two’s worth of doxycycline can cause is nothing compared to the pain and suffering of a chronic, relapsing infection.
  • Testing for all tick-borne illnesses is abysmal.  Lyme is just the tip of the spear.  Ticks are literal garbage cans full of numerous pathogens they can transmit in just one bite.  The only infections listed in this article were Lyme disease, Anaplasmosis, and Babesia, when there are 19 and counting infections ticks can transmit.  Research has shown being infected with more than one pathogen causes more severe illness for a longer duration.  It is imperative that treatment includes medications that focus on each pathogen.  For the mounting list of tick-borne pathogens:
    • Babesiosis
    • Bartonellosis
    • Borrelia miyamotoi
    • Bourbon Virus
    • Colorado Tick Fever
    • Crimean-Congo hemorrhagic Fever
    • Ehrlichiosis/Anaplasmosis
    • Heartland Virus
    • Meat Allergy/Alpha Gal
    • Pacific Coast Tick Fever: Richettsia philipii
    • Powassan Encephalitis
    • Q Fever
    • Rickettsia parkeri Richettsiosis
    • Rocky Mountain Spotted Fever (RMSF)
    • SFTS: Severe Fever with Thrombocytopenia Syndrome
    • STARI: Southern Tick-Associated Rash Illness
    • Tickborne meningoencephalitis
    • Tick Paralysis
    • Tularemia
  • While the wood tick and deer tick are the most common ticks in Wisconsin, they are hardly the only ticks we must be concerned about.  Go here for more on the various types of ticks and the diseases they carry. The Lone Star tick has been found in Wisconsin and one allergist in MN states he diagnoses approximately 1 patient per month with Alpha-gal allergy – some patients hailing from WI.  Wisconsin is a hot-spot for Powassan virus, and we recently had our first death due to Rocky Mountain Spotted Fever. It would be a huge mistake to believe you only have to worry about Lyme, Anaplasmosis, and Babesia in Wisconsin.  Nearly every patient I work with also has Bartonella – a tenacious pathogen that isn’t even on most doctors’ radars, and Mycoplasma is very common.
  • Most articles such as these don’t tell you what to do once you’ve become infected. Optimally, you would be prepared before this ever happened by finding the Lyme literate doctors (LLMD) in your state.  The best way to do this is to contact your local Lyme support group. There is also a tab on the right side of this website called, “Find a Lyme Support Group.”  There is also another tab slightly down from that in which you can contact ILADS directly for doctors in your area.  Read this if you don’t know what a LLMD is.  LLMDs are specially trained in tick-borne illness and know how to diagnose patients clinically.  This is crucial because current 2-tiered CDC testing misses anywhere from 70-85% of cases or more.  You truly can not trust testing.  They also know how to treat this complex illness that typically is far more than just Lyme.

Category:

Babesia, Lyme, Prevention, Testing, Ticks, Transmission, Treatment, Viruses

Letter to IDSA President: Why Do Guidelines Omit Treating Disabled Lyme Patients, Why Do You Discourage Routine Testing, & Why Are There No References to Failed Treatment & Persistent Infection?

**Comment**

Tuttle brings up many valid questions you may want to consider if you are planning on writing HHS on how best to address Lyme disease.

  • It needs to be understood that this complex illness started out historically through the myopic lens of a rheumatologist and has never expanded to include the many and varied symptoms that are experienced in reality and demonstrated through research.
  • Conflict if interest riddled public health ‘authorities’ still have not admitted the potential of sexual transmission and they still state that congenital transmission is ‘rare’ despite the fact nobody’s counting.  
  • They also continue to ignore the importance of other pathogens that research has shown cause more severe illness for a longer duration of time, and that require different medications.
  • Research has also demonstrated the different forms of borrelia that mainstream medicine continues to ignore, that also require different medications.
  • There is a sordid back-story (in which they took out the most specific band for Lyme) on current CDC-2 tiered testing which tests for ONE strain of borrelia, which misses a majority of cases.  They aren’t even looking for or testing for other pathogens.
  • They falsely continue to state that 60-80% obtain the EM rash, when research shows it’s highly variable and between 0-80%.  Only 25% had the rash in the first ever patient group.  The CDC has received a formal complaint on this false statistic in 2019.  Crickets.
  • Since obtaining a positive test and having the EM rash are requirements to enter research studies, it’s obvious that a HUGE subset of patients are not being studied.  This has been going on for over 40 years and needs to change.
  • The CDC also falsely states that only 10-20% go on to suffer persistent symptoms.  This only includes patients who were diagnosed and treated early.  There is a larger group of 40-60% of patients that are diagnosed and treated late. When you combine the two groups, perhaps over 60% of infected patients are chronically infected and struggle with severe symptoms. This distinction is extremely important because CDC statistics downplay the significance of the problem. Also, research dollars are limited and typically go to issues affecting the most people.

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

Inquiry to IDSA President Barbara D. Alexander, MD

MAY 4, 2021 — 

Additional information to be shared with the public originating from the monthly NH Lyme Study Commission

Study Commission Website:
http://www.gencourt.state.nh.us/statstudcomm/details.aspx?id=1515&rbl=1&txtbillnumber=hb490

I do not expect a response to the inquiry below so feel free to send a personal note to Dr. Alexander to remind her to answer my three questions.

———- Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: “alexa011@mc.duke.edu” <alexa011@mc.duke.edu>
Cc:  All members of the NH Lyme Study Commission
Date: 05/02/2021 8:19 AM
Subject: Inquiry to IDSA President Barbara D. Alexander, MD

May 2, 2021

Infectious Diseases Society of America
4040 Wilson Boulevard Suite 300
Arlington, VA 22203
Attn: Barbara D. Alexander, MD, MHS, FIDSA, President

Dear Dr. Alexander,

As a member of NH Governor Chris Sununu’s Lyme Disease Study Commission, I am forwarding the following three highlighted questions that were brought up during last month’s Zoom meeting. I am hoping that you can answer these questions which came to light after State Epidemiologist, Dr. Ben Chan reviewed your IDSA Lyme Treatment Guideline.

Question #1 refers to Lyme patients in wheelchairs as there doesn’t seem to be a section in your guideline focused on treating the disabled Lyme patient population.

I would also like to call attention to a statement from Dr. Ying Zhang, professor at the Department of Molecular Microbiology and Immunology at the Johns Hopkins Bloomberg School of Public Health:

Standard antibiotic treatment for Lyme disease does not kill persistent Borrelia bacteria.
http://droopyyoupi.blogspot.com/2015/08/standart-antibiotic-treatment-for-lyme.html

Excerpt:

-What has tuberculosis and Borrelia burgdorferi in common? In the late stage of the disease occurs persistent (tolerant) bacteria, which essentially means that the bacteria lasts and lasts and lasts. They protect themselves against antibiotics and are difficult to treat.

– Both Borrelia burgdorferi and tuberculosis is relatively easy to cure in the early stages, even with the use of one antibiotic. In the late stage it is impossible to cure the disease with the same type of treatment in the acute phase, said Dr. Ying Zhang when he visited the year NorVect conference.
________________

Kindly hit “reply all” so all members of the NH Lyme Study Commission will see your response.
Respectfully submitted,
Carl Tuttle
Hudson, NH
 
Three highlighted questions that were brought up during last month’s Zoom meeting:

———- Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: All Members of the NH Lyme Study Commission
Date: 04/28/2021 11:04 AM
Subject: April 23rd meeting minutes

Rep Marsh and Commission members,
For the record here is a copy of the questions I asked during the last Zoom meeting which should be summarized in the minutes.

Question #1 Stages of Lyme disease 
Stage 3: Months later; Arthritis (from the March 2th minutes)

I would like to call attention to the 43-page document I sent to all members prior to the start of this study commission. [1] On page two of that document under the topic “Severity of Lyme Disease” (cases that actually made headlines) there are references to Lyme patients in wheelchairs, along with Dr. Neil Spector requiring a heart transplant after his Lyme went untreated for four years.

Untreated strep throat can progress to rheumatic fever, causing irreversible heart damage. Untreated syphilis leads to progressive disability and dementia, and untreated HIV infection progresses to AIDS with significant disability and death. So what happens to a patient with Lyme disease who goes months, years, or decades before diagnosis because of a false-negative serological test result, missing bulls-eye rash, misdiagnosis etc., etc.?

Why isn’t the disabling stage of Lyme disease recognized? I have never seen a public Service Announcement informing the public that you could become horribly disabled or die from Lyme disease yet we have all this evidence nationwide that Lyme is destroying lives, ending careers while leaving its victim in financial ruin.

Question #2 IDSA Treatment Guidelines discourage routine testing for Lyme disease in patients who have been diagnosed with the chronic diseases of our time. 

On page 5 of that 43-page document I sent to the group there is a link to the 5min extended trailer for the documentary “Under our Skin” From the Lyme patient interviews;

I was misdiagnosed with:

-Chronic Fatigue Syndrome
-Lupus
-MS
-Fibromyalgia
-ALS

We also know that Kris Kristofferson was being treated for Alzheimer’s disease only to find out it was Lyme all along.

The 2020 IDSA Lyme treatment guidelines strongly recommend against “routine” testing for disease in patients with:

Typical amyotrophic lateral sclerosis (ALS),
Relapsing-remitting multiple sclerosis (MS),
Parkinson’s disease,
Dementia, or cognitive decline,
New-onset seizures,
Psychiatric illness, and
Children with developmental disorders.

Who in their right mind would not want to make sure that these patients are not suffering from an untreated Lyme infection; especially in a state with one of the highest rates of Lyme in the country?

Question #3 There are no references to failed treatment in the IDSA Guidelines so no acknowledgment of persistent infection. 

My letter to the editor published in the BMJ last June had a short list of failed treatment references; there are actually hundreds so why is the IDSA refusing to recognize this serious problem which is leaving hundreds of thousands if not millions worldwide in a debilitated state?

Letter to the editor of the BMJ:

Lyme borreliosis: diagnosis and management
https://www.bmj.com/content/369/bmj.m1041/rr-1

Carl Tuttle
Hudson, NH

Reference

1. 43-page document I sent to all members prior to the start of this study commission
https://www.dropbox.com/s/cfgrq6m1y645q3b/NH%20House%20Bill%20490%20Lyme%20Disease%20Commission%20Oct%203%202020.pdf?dl=0

Category:

Activism, Lyme, Testing, Treatment

Give Your Comments to HHS on How Best to Address Lyme Disease

https://www.lymedisease.org/comments-hhs-lyme-disease/

Give your comments to HHS on how best to address Lyme disease

The Kay Hagan Tick Act, signed into law in 2019, called for the development of a national strategy to address vector-borne diseases, including Lyme and other tick-borne infections.

Since then, the Department of Health and Human Services (HHS) has been working to develop the plan. It includes such goals as improving surveillance, diagnosis, prevention, treatment, and research.

Now, HHS is seeking input from a variety of sources—including people affected by Lyme and other vector-borne diseases.

In a Request for Information (RFI) posted on the Federal Registry, HHS said that public comments must be received electronically no later than midnight Eastern Time on June 11.

Questions you can answer

It states:

This RFI seeks public input on strengthening and improving the nation’s response to vector-borne diseases in a number of areas. Responses may address one or more of the areas below:

  1. What do you recommend as the top priorities to address vector-borne diseases in the United States during the next five years? Why are these the most important priorities?
  2. What goals, objectives, and strategies would you propose for each of your top priority areas?
  3. Do you have recommendations on specific research or programmatic efforts to improve surveillance, diagnosis, prevention, and treatment of vector-borne diseases?
  4. Any additional topics you wish to provide input on.

Click here for more information about this RFI and how to submit comments.

Category:

Activism, Lyme

Abdominal Pain in Child with Lyme

https://danielcameronmd.com/lyme-disease-manifests-abdominal-pain-child/  Podcast Here

LYME DISEASE MANIFESTS AS ABDOMINAL PAIN IN A YOUNG CHILD

lyme-disease-abdominal-pain

Hello, and welcome to another Inside Lyme Podcast. I am your host Dr. Daniel Cameron. In this podcast, I will be discussing the case of a 9-year-old boy who presented with abdominal pain as his first symptom of Lyme disease and the subsequent onset of attention deficit and ataxia (or difficulty in walking).

By

I first read about this case by Savasta and colleagues in the Italian Journal of Pediatrics.1

There are a growing number of signs and symptoms of Lyme disease in children. Savista and colleagues describe the 9-year-old child as having a one-year history of “abdominal pain, progressive poor scholastic performance and gait disturbance.”

At age 8, the boy had been hospitalized for severe abdominal pain and underwent extensive testing. But results were negative. His abdominal pain remitted over the next two months.

One year later, the boy became ill again with new symptoms. “He experienced learning difficulties with attention deficit and irritability, in addition, he developed difficulty in walking,” wrote the authors.  “When he was admitted to our Department he presented with ataxic gait, difficulty in speaking and attention deficit.”

The child was diagnosed with abdominal neuroradiculopathy. “Although not confirmed by nerve conduction studies, the clinical characteristics of the pain, the exclusion of other causes, the diffuse spinal roots enhancement on MRI and the additional confirmation of peripheral neuropathy are highly suggestive for abdominal neuroradiculopathy as symptom of onset of the disease,” the authors wrote.

“We observed ataxic gait, learning difficulties with attention deficit and irritability, signs and symptoms reflecting bacterial involvement of central nervous system,” the authors wrote.

Diagnosis and Treatment

Additional laboratory and radiological findings confirmed the diagnosis of late Lyme disease.

The boy was treated with 3 grams of intravenous ceftriaxone for 3 weeks, followed by an additional 3-week course of oral amoxicillin.

The treatment was prolonged “considering the disseminated and long-lasting illness,” the authors wrote.

They explain that in hindsight, “Indeed, a thorough past medical history collection evidenced that the onset of abdominal pain started 2 weeks after a tick-bite episode occurred during a walk in the wood.”

Three months after treatment, the boy’s gait and scholastic performance had improved and resolved completely after one year. A repeat of his spinal tap showed marked improvements.

The authors concluded the abdominal pain was due to painful radiculopathy.  Painful radiculopathy leading to abdominal pain has previously been seen in adults but not children.

They suggest that abdominal radiculitis, “although extremely rare, could be the first manifestation of early Lyme neuroborreliosis in pediatric patients.”

The authors did not address whether the abdominal pain was associated with autonomic dysfunction.

This case report highlights the importance of considering “Lyme disease in the differential diagnosis of abdominal pain of unknown origin in children, especially in countries where the infection is endemic,” the authors wrote.

This podcast addresses the following questions:

  1. Have you seen abdominal pain from Lyme disease in your practice?
  2. What types of abdominal pain have you seen in your Lyme disease patients?
  3. What is abdominal neuroradiculopathy?
  4. Abdominal pain can have many causes and is quite common in children. So, at what point do you consider Lyme disease in the differential diagnosis of a child with abdominal pain?
  5. What is the importance of the tick bite?
  6. What is the significance of the ataxic gait, irritability and learning difficulties?
  7. Will Lyme disease patients tolerate antibiotics?

Editor’s note:  I have had Lyme disease patients with abdominal pain associated with autonomic dysfunction in my practice.  Thanks for listening to another Inside Lyme Podcast. You can read more about these cases in my show notes and on my website @DanielCameronMD.com. As always, it is your likes, comments, reviews, and shares that help spread the word about Lyme disease. Until next time on Inside Lyme.

Please remember that the advice given is general and not intended as specific advice as to any particular patient. If you require specific advice, then please seek that advice from an experienced professional.

Inside Lyme Podcast Series

This Inside Lyme case series will be discussed on my Facebook and made available on podcast and YouTube.  As always, it is your likes, comments, and shares that help spread the word about this series and our work. If you can, please leave a review on iTunes or wherever else you get your podcasts.

References:
  1. Savasta S, Fiorito I, Foiadelli T, et al. Abdominal pain as first manifestation of lyme neuroborreliosis in children, case report and review of literature. Ital J Pediatr. Nov 23 2020;46(1):172. doi:10.1186/s13052-020-00936-y

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For more on abdominal pain and Lyme:

Category:

Lyme, Psychological Aspects, research

“The Red Ring” – A Documentary About Tick-Borne Illness

https://www.lymedisease.org/red-ring-lyme-film

05 MAY 2021

By Dorothy Kupcha Leland

TOUCHED BY LYME: You can watch Lyme film “The Red Ring” online now

In 2011, Finnish filmmaker Joonas Berghäll was living his dream, making films about important topics. He went to Kenya to direct a documentary about women’s rights in that country. “I was working outside for three weeks and I felt good and strong,” he remembers.That changed dramatically when he returned to Finland. Within days, he started to experience a cascade of symptoms that hit hard and kept going—for weeks, and then months, and then years.

Pain, fatigue, insomnia, muscle weakness, digestive problems, losing his balance, memory lapses, brain fog…among others.

“I felt like there were snakes and fishes living in my stomach,” he said. By the end of the first year, he had over 20 symptoms.

82 doctors

In a scenario that’s painfully familiar to anybody with chronic Lyme disease, he went from doctor to doctor, desperate for someone to help him. He saw 82 practitioners, with no answers.

Finally, six years in, he located a doctor who tested him for Lyme disease and co-infections. Berghäll tested positive for three species of Borrelia (Lyme), as well as Babesia, Bartonella, Ehrlichia, Rickettsia, Mycoplasma, and several viruses. As the doctor noted: “Borrelia seldom comes alone.” Yet, although he was finally diagnosed in Finland, he could not obtain treatment there, and had to look elsewhere.

All this is the setting for a remarkable new film called “The Red Ring.” Being a filmmaker, Berghäll documented his circuitous journey from the very beginning. Eventually, he teamed up with producer Satu Majava, to create a film that raises bigger questions than just about his personal health.

Questions like: Why is this illness not taken seriously—all over the world? Why are there hundreds of millions of people suffering? Why isn’t the World Health Organization willing to address this? (He called the WHO over 50 times, seeking an interview. No dice.)

Berghäll attended a medical conference in Europe where he met and interviewed American Lyme doctor Richard Horowitz, former ILADS president Leo Shea, and other experts. In time, Berghäll spoke with patients, doctors and researchers from many countries, with differing points of view on the topic. One, a prominent infectious disease doctor in Finland, insists that testing is perfectly fine, and that chronic Lyme simply doesn’t exist. (Aarrrrrrgghh!)

The filmmaker even traveled to New York to start treatment with Dr. Horowitz. In March 2020, after coming to New York for a follow-up appointment with Dr. Horowitz, he had to scramble to get out of the country before international travel shut down due to the coronavirus pandemic.

Watch the film now

“The Red Ring” is both riveting and educational. I encourage you all to take the opportunity to view it. It’s currently available to stream via Vimeo, for $3.99.

In addition, Project Lyme will host a Live Q&A about the film, featuring writer and director Joonas Berghäll and producer Satu Majava. It will take place May 15 at 12:00 pm EDT. To stream the film or register for the Q & A event click here.

Preview of the film:

Category:

Activism, Lyme