Archive for March, 2021

Podcasts on Empowering Parents & Protecting Children

https://parentalrightsfoundation.org/podcast/  (Numerous podcasts within link)

Welcome to the EPPiC Broadcast: Empowering Parents and Protecting Children. Featuring personal stories, breaking news, and insightful commentary, we’ll encourage and inform you on the issue of family and parental rights as you guide and protect that child who is your world. From the Parental Rights Foundation.

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**Comment**

It’s imperative Lyme/MSIDS parents learn about the Parental Rights Amendment and how its needed in this current environment.

Lyme/MSIDS patients have been accused of child abuse. Infected children have been told “they made it all up,” and that they are lazy. Parents have been accused of Munchausen by Proxy. And right here in Wisconsin, doctors are afraid to refer injured children for evaluation due to an abuse of power. Putting unmerited power in the hands of these ‘authorities’ invites trouble. Imagine all the issues that could develop with an infected child.

For more:

COVID-19 Patients With Gum Disease 9 Times More Likely to Die

https://medicalxpress.com/news/2021-02-gum-disease-linked-covid-complications.html

Study Shows COVID-19 Patients With Gum Disease 9 Times More Likely to Die

Feb. 3, 2021

by European Federation of Periodontology (EFP)

gum

COVID-19 patients are at least three times more likely to experience complications if they also have gum disease, according to research published today in the Journal of Clinical Periodontology,1 the official publication of the European Federation of Periodontology (EFP).

The study of more than 500 patients with COVID-19 found that those with gum were 3.5 times more likely to be admitted to , 4.5 times more likely to need a ventilator, and almost nine times more likely to die compared to those without gum disease.

Blood markers indicating inflammation in the body were significantly higher in COVID-19 patients who had gum disease compared to those who did not, suggesting that inflammation may explain the raised complication rates. (See link for article)

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**Comment**

Interestingly, masks can cause gum disease.

Excerpt:

“Gum disease — or periodontal disease — will eventually lead to strokes and an increased risk of heart attacks,” Marc Sclafani, a dentist and co-founder of One Manhattan Dental, told the New York Post about “mask mouth,” which is increasingly causing inflammation and gum disease among patients.

Another dentist and co-founder at One Manhattan Dental, Rob Ramondi, said 50% of his patients are suffering from negative health issues due to mask-wearing.

Masks have also been linked to chronic diseases like lung disease and cancer.

For yet another review of the science.

For more:  

How PTLDS & ACA Affect Lyme Patients

http://

How PTLDS and ACA Affect Lyme Patients: Part 1

Post Treatment Lyme Disease and Insurance Coverage

Very few Lyme patients appear to know that the Affordable Care Act (ACA) or Obamacare is written to give you health insurance coverage for persistent Lyme and all its complications. Learn about ACA’s legislative language that protects your access to care in this video interview organized by Kristina Petterson Bauer, the Director of Texas Lyme Alliance.

This is Part 1 of three videos on the topics of ACA coverage for persistent Lyme and complications, the medical fraud of Post Treatment Lyme Disease Syndrome (PTLDS), the new Lyme medical codes in the ICD11, and government accountability regarding the Lyme epidemic.

This interview discusses the relationship between the Affordable Care Act/ACA and Post Treatment Lyme Disease Syndrome/PTLDS for Lyme patients’ access to covered care with insurance companies. Lyme patients used to have covered care into the mid-1990s.

Our discussion explores what that was, how we lost it, and why.

Watch the next 2 videos (loading soon) for the complete picture and what we can do to improve access to covered care and treatments that work. Like our content by clicking the like button here, and subscribe to our channel. To support our work and visit both our Lyme related websites, go to https://www.texaslymealliance.net/don… to learn more and make donations.

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**Comment**

I am not a proponent of the ACA as it is unaffordable to most people.  All it has done is replace one group who couldn’t afford health insurance with another group.  I also simply do not trust our government to handle anything. I also do not agree with many issues within the ACA.  Health care is personal and there are moral issues involved and all should be given choices they can agree and live with.  Recently even Democrat Senator Elizabeth Warren finally acknowledged some of the “unintended consequences” and likened it to her “Obamacare epiphany.”

“It’s a familiar story: Big government intervention creates incentives and raises costs that help big business, and then politicians demand more government intervention to fix the distortions they caused,” the board wrote.  Source

On top of this, due to how the CDC/IDSA mishandles Lyme/MSIDS by flatly denying persistent infection and the usefulness of prolonged treatment, anything they handle is tainted with these suppositions. In other words, all you will get through the ACA is the CDC/IDSA Lyme guidelines which have only gotten worse and more entrenched with time.

Medical insurance for Lyme/MSIDS patients is rife with difficulties as most insurance will not cover adjunctive therapy which can be just as important as antimicrobial treatment.  Patients pay thousands upon thousands out of pocket for a long, long time.  We spent over $150,000 out of pocket for the two of us over 5 years of treatment.  I don’t know what we would have done without the savings and investments we sold to pay for treatment.  This issue of money is a deep, dark vortex that extremely sick and cognitively affected sick patients must somehow deal with – on top of continuing to work to keep the lights on, eat, and pay for treatment.  It’s a quagmire for sure.  One I surely don’t have all the answers to but firmly believe that more government IS NOT the answer.

After going years without any medical insurance while we still had active teenagers in the house (yes, it was frightening) we finally heard about a “share-pay” program that isn’t insurance and that you can pick your own health care provider, that covers supplements and adjunctive therapy for a period of time including massage therapy, chiropractic, colonics, and much more that we found beneficial.  The only draw-back is it doesn’t cover pre-existing conditions so Lyme/MSIDS wasn’t covered for us, but our family now had coverage for other things.  It is also economical with fees ranging from $135-$560 per month.  (I receive no monies from this organization) While this one is Christian based, I’ve heard there are similar programs that are not.  Thinking back to when we considered ACA, it would have cost us over $2,000 per month – hardly affordable.

25-Year-Old With Transverse Myelitis & Lyme

https://danielcameronmd.com/lyme-podcast-transverse-myelitis-lyme-disease/

LYME PODCAST: A 25-YEAR-OLD MAN WITH TRANSVERSE MYELITIS AND LYME DISEASE

A 25-year-old man with transverse myelitis and Lyme disease

I will be discussing a 25-year-old man with transverse myelitis and Lyme disease. “He showed gradual improvement in gait, motor and sensory functions of his lower extremities along with a resolution of neurogenic bowel.” wrote the authors. The authors added. “He continues to need intermittent self-catheterization for neurogenic bladder.”

 
 
Podcast:  https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5idXp6c3Byb3V0LmNvbS83NzIxNjAucnNz/episode/QnV6enNwcm91dC0zMDE1NDE4?sa=X&ved=0CAUQkfYCahcKEwjgy6vH3KPvAhUAAAAAHQAAAAAQAg

Dumic and colleague first discussed this case in the journal IDCases  in 2019.

“A previously healthy 25-year-old man presented with inability to urinate and frequent falls associated with bilateral lower extremity weakness and numbness.” wrote the authors.

Two weeks earlier, he described a red circumferential rash. His rash was approximately 10 cm in diameter, which is about 4 inch in diameter. The CDC only requires a 5 cm rash to diagnose Lyme disease criteria, which is about 2 inches.

He lived in Wisconsin, USA, with extensive exposure to ticks. He lived next to the woods, hiked, camped, and fished, and has two dogs. He had no recent history of a tick bite.

He also developed a mild, intermittent headache, mild neck stiffness, and thought he had a fever. Flu-like symptoms have commonly been reported in Lyme disease.

Did he get treated for Lyme disease? No.

The rash disappeared within a week without treatment. The erythema migrans rash of Lyme disease often clears without treatment.

His condition took a turn for the worse. “Five days prior to admission, he developed urinary retention as well as progressive numbness and weakness in his lower extremities.” wrote the authors. He was also not able to move his bowels.

His sensory deficit progressed from “left foot numbness to the upper thorax right below the nipple line anteriorly and below the shoulder blades posteriorly.” write the authors.

He began to fall due to the weakness of both legs and problems with his gait.

His physical examination revealed several findings. He had weakness of both legs, mild spasticity in both knees, increased reflexes in his legs, a diminished sensation in his legs, and a Babinski sign of the left foot.

A positive Babinski sign occurs when a doctor stimulates the bottom of the foot. The big toe bends up and back to the top of the foot, and the other toes fan out. This can mean there is some problem with the nervous system.

He had evidence suggestive of myelitis on an MRI “MRI of the cervical and thoracic spine revealed T2 signal hyperintensity in the central spinal cord gray matter at C5, C6 and T3 to T9 levels suggestive of myelitis.” write the authors. They use the term suggestive as a T2 signal hyperintensity can be from other causes. Myelitis refers to inflammation of the spinal cord.

He had strong evidence of an inflammatory process in his spinal fluid as measured by a pleocytosis in his spinal fluid. These are white cells in his spinal fluid. His antibody test for Lyme disease was negative.

His PCR for Lyme disease was positive. They were able to confirm PCR tests were positive for Lyme disease using a molecular detection test at the Mayo Medical Laboratories.

He was diagnosed and treated for acute transverse myelitis.

TRANSVERSE MYELITIS AND LYME DISEASE

The man’s motor, sensory, and autonomic dysfunction were typical of acute transverse myelitis. Autonomic dysfunction is a part of the nervous system that regulates internal organs such as the heart, stomach and intestines. The autonomic nervous system is composed of the Sympathetic and Parasympathetic system. It has also been called the fight-or-flight response. The man was unable to control his bowels and bladder.

OUTCOME

He was treated for Lyme disease with IV ceftriaxone. He also was treated with an intravenous antiviral medicine, Acyclovir, for two days until the spinal tap PCR was positive. Finally, he was treated with the steroid methylprednisolone 1 g IV daily for three days.

“He showed gradual improvement in gait, motor and sensory functions of his lower extremities along with a resolution of neurogenic bowel.” wrote the authors.

The authors added, “he continues to need intermittent self-catheterization for neurogenic bladder.”

This is not the first case of transverse myelitis and Lyme disease patients according to the authors. Their search revealed six other cases of neurologic Lyme disease associated with acute transverse myelitis.

What can we learn from this cases?

  1. Acute transverse myelitis can occur in Lyme disease.
  2. The spinal tap in Lyme disease can present with a high white count, also called pleocytosis, and still have a negative antibody test.
  3. A positive PCR test was able to confirm Lyme disease in this patient.
  4. The man’s acute transverse myelitis and Lyme disease improved with antibiotic treatment.

What questions does these cases raise?

  1. How often does transverse myelitis occur in Lyme disease?
  2. Would the man have been treated for Lyme disease if the PCR test at the Mayo had been negative?
  3. Would the man no longer need intermittent self-catheterization for neurogenic bladder if he were treated with more than a single one-month course of intravenous ceftriaxone?</li
  4. Were there other autonomic issues not described by the authors?</li
TREATING TICK-BORNE DISEASE IN MY PRACTICE

In my practice, each individual requires a careful assessment. That is why I order a broad range of blood tests for other illnesses in addition to tick-borne infections. I also arrange consultations with specialists as needed.

Many patients are complex, as highlighted in this Inside Lyme Podcast series.

We need more doctors with skills recognizing a tick-borne illness in an individual with acute transverse myelitis and Lyme disease. We hope that professionals evaluating individuals with acute transverse myelitis can use this case to remind them to look for tick-borne illnesses and treat accordingly.

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.  Sign up for our newsletter to keep up with our cases.

References:
  1. Dumic I, Vitorovic D, Spritzer S, Sviggum E, Patel J, Ramanan P. Acute transverse myelitis – A rare clinical manifestation of Lyme neuroborreliosis. IDCases. 2019;15:e00479.
  2. Kenney MJ, Ganta CK. Autonomic Nervous System and Immune System Interactions. Compr Physiol. 2014 July ; 4(3): 1177–1200.

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For more:

Beating the Winter Blues

https://globallymealliance.org/beating-the-winter-blues/

By Jennifer Crystal

In the best of times, late winter can drag for people. Cabin fever and a longing for sunshine and warmth make us feel like we’re in the movie Groundhog Day, repeating the same scene over and over and over. The pandemic has only made the usual winter blues worse. We’ve already been repeating the same isolated days, with many people working or learning from home, for a year.

Now the dismal weather makes it seem like this period will never end.

This is a feeling that tick-borne illness patients understood long before the pandemic.

For many patients, especially those with late-stage Lyme disease, days, months, and even years blend together into a bedridden monotony. As I explained in my post “Groundhog Day: Casting a Shadow on Lyme Disease”, for several years my own life revolved around sleeping, taking medications, and going to the pharmacy or doctor’s appointments. Every day was the same, with symptoms sometimes improving and sometimes getting worse. I didn’t know if it was Monday or Wednesday. There was no differentiation between weekdays and weekends. Battling Herxheimer reactions, brain fog, burning extremities, systemic hives, headaches, and aching muscles and joints, I wondered if the suffering would ever end.

At times, the monotony was worse than the symptoms themselves. Staring at the same walls, interacting with the same people (or experiencing total isolation if you live alone), not being able to do your usual activities, can make a person want to scream. Sometimes, I did scream. Sometimes I still do.

But surviving tick-borne illness has taught me some important lessons for getting through the pandemic, as I outline in my posts “What Lyme Patients Can Teach Us About the New Normal” and “Lessons From Lyme: Lockdown Isn’t Forever”. My illness journey also gave me some tools for getting through long, isolating winters. Below are some ideas for beating the winter blues during a pandemic:

Change your scenery: This may seem easier said than done when you’re stuck at home. Sometimes, though, we make ourselves more stuck than we need to be. I mostly convalesced in my bedroom. Even moving to the couch could be a welcome change of scenery. Try working in a different room in the house, taking a walk in a different direction each day, or even eating at a different seat at the kitchen table. A small shift in scenery can make a big shift in perspective.

Redecorate: Whether you order a new comforter, knit a new blanket, or paint a wall a new color, a change in scenery, rather than just a change of scenery, can be refreshing. If you are a caretaker for a Lyme patient, think about ways you can do some redecorating for them (with their permission, of course).

Keep some routine: Part of the difficulty of the pandemic is many people feel their days are unstructured. When I was sick, the day dragged most when there was nothing to do but just lie in bed. Once I started to get a bit better, I appreciated having a set routine of physical therapy twice a week, neurofeedback twice a week, talk therapy once a week, etc. Now, Zoom meetings and remote or hybrid schooling give at-home workers or students some semblance of a schedule, but it’s not always enough. Having set meal times, stretch breaks, or reading hours can lend more structure to an otherwise open-ended day. Think about fun routines that can give you something to look forward to as well: weekly Zoom game nights with friends, pizza nights with the family, or home manicures.

…and also add some variety to that routine: Variety is the spice of life, even when you’re stuck in bed or at home. If you’re able, try a new type of exercise once or twice a week. Watch a new show. Try a new recipe (or, if you’re took sick to cook, have a caretaker make one for you). Paint your nails a wild color. Novelty breaks up monotony and helps you feel like you’re controlling some aspect of an otherwise uncontrollable situation.

Get outside: I know it’s cold. I know it’s dreary. I know you might not feel well enough to exercise (and you shouldn’t, if you’re sick with tick-borne illness and aren’t ready). If you are able, think about trying a new winter sport like snowshoeing. Build a snow fort, no matter how old you are. If you feel awful, perhaps just sit on a front stoop or back porch for five minutes in a mask. Or open the window for five minutes.

Be cozy: Hibernation doesn’t have to mean huddling inside miserable. Make yourself as comfortable as possible. Try a weighted blanket. Put on fuzzy socks and slippers. Make some hot tea. Pampering yourself is part of self-care, and self-care is a critical part of healing and survival.

Sunbathe: You don’t have to be on a beach, or even outside, to soak up some rays. Think like a cat: find a sunny patch of couch or floor in your house, and curl up there, pointing your face to the light. You might even set up a beach chair inside and soak your feet in a bucket of water to pretend you’re at the beach. When I was sick, I took these “staycations” indoors. Now, I have scoped out a sunny, isolated spot in my neighborhood where I sit at lunch time. Vitamin D is healing!

Listen to sounds or watch images of nature: If you’re too sick to get outside, or you live in a city where you can’t do so in a socially distanced manner, you can still reap the benefits of nature virtually. Nature sounds calm the nervous system. Just listening to a soundtrack of a waterfall or birds chirping, or looking at images of mountains, can help elicit the feelings you would have while actually experiencing nature.

Talk to someone outside your pod: No matter how much you love the people you live with, being home with them all the time can be stifling. It’s hard to make time for phone calls when you’re managing a family, working from home, or feeling too sick to talk for long. But even carving out ten minutes per week to talk to an old friend can be revitalizing.

And finally, the most important lesson I learned from my journey with Lyme is that spring always does come, no matter how long the winter lasts.

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Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. Her memoir about her medical journey is forthcoming. Contact her at lymewarriorjennifercrystal@gmail.com.