Archive for the ‘Lyme’ Category

Yolanda Hadid on Lyme: “If it Weren’t For My Children, I Wouldn’t Be Here Today”

https://www.vogue.co.uk/beauty/article/yolanda-hadid-lyme-disease

Yolanda Hadid on Lyme: “If it weren’t for my children, I wouldn’t be here today”

NY Senate Passes Bill Requiring State to Track Lyme-Related Deaths

https://www.lymedisease.org/nys-lyme-deaths-bill/

NY Senate passes bill requiring state to track Lyme-related deaths

Feb. 12, 2021

Pandas & Lyme in a 7-Year Old

https://danielcameronmd.com/pandas-and-lyme-disease-in-a-7-year-old-child/

PANDAS AND LYME DISEASE IN A 7-YEAR-OLD CHILD

PANDAS-Lyme-disease

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 7-year-old child who was initially diagnosed with PANDAS and later, Lyme disease.

The article by Cross et al. entitled “Case Report: PANDAS and Persistent Lyme disease with Neuropsychiatric Symptoms: Treatment, Resolution and Recovery” was published in Frontiers in Psychiatry. [1]

The 7-year-old girl developed multiple physical and neuropsychiatric symptoms six months after travelling to a tick endemic region of the U.S. During this period, she was treated for 3 separate strep infections and was subsequently diagnosed with Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections (PANDAS). PANDAS was considered based on classic symptoms and a history of strep, a positive ASO titer and a slightly elevated DNase B titer.

However, despite treatment, the patient’s symptoms continued to worsen. Additional testing revealed that she was also positive by CDC’s criteria for Lyme disease. The Lyme EIA and western blot IgM were positive (with 2 of 3 bands). The western blot IgG was positive for 3 of 10 bands at the IGeneX lab. Her B. henselae IgG was positive at Quest labs. Her IgG Mycoplasma and IgG Babesia duncani antibodies were positive at IGeneX.

Dr. Charles Ray Jones, co-author and treating physician, describes the patient’s broad range of symptoms.

Neuropsychiatric symptoms

On her first visit, “the patient presented with crying, anxiety, headache, joint pain, decreased cognitive functioning, fatigue, nighttime awakening and an extreme fear of sleeping alone.”

The patient’s symptoms were extensive, Jones explains, and included:

• Obsessions, compulsions
• ADHD-like behavior
• Decline in school work
• Separation anxiety
• Panic attacks
• Muscle and joint pain
• Mood lability
• Aggressive behavior
• Fatigue
• Headaches
• Difficulty sleeping
• Word selection problems
• Cognitive decline
• Irrational fears (would not sleep alone)

Functional decline 

The young girl was considered a gifted child and excelled in academics. But cognitive symptoms emerged. She reportedly told her mother, “Mom, something happened to my brain.”

“The patient regressed from being a year ahead of her class in math, to being unable to add beyond the number 10. She began having trouble comprehending more difficult reading,” the authors explain.

“During a ride home with her mother, the patient asked, ‘Who are you? What’s your name again?’ And ‘I know you are mommy but what’s your name?’”

Lyme disease, PANDAS and PANS

PANDAS may be diagnosed when a strep infection triggers multiple neurologic and psychiatric symptoms. PANS or Pediatric Acute-Onset Neuropsychiatric Syndrome, on the other hand, may be triggered by other bacterial, viral or fungal infections. Researchers believe that Borrelia burgdorferi, the bacteria that causes Lyme disease can trigger PANS in some patients.

Lyme disease, PANS and PANDAS can present with similar symptoms. Dr. Bransfield, a psychiatrist who specializes in tick-borne diseases, describes a broad range of neuropsychiatric symptoms that he has seen in his Lyme disease patients. [2]

These include: behaviors associated with developmental disorders or autism spectrum disorder, schizoaffective disorders, bipolar disorder, depression, anxiety disorders (panic disorder, social anxiety disorder, generalized anxiety disorder, posttraumatic stress disorder, intrusive symptoms), eating disorder, decreased libido, sleep disorder, addiction, opioid addiction, cognitive impairments, dementia, seizure disorders, suicide, violence, anhedonia, depersonalization, dissociative episodes, derealization and other impairments.”

Treatment

According to the authors, the child was treated with multiple courses of oral and IV antibiotics including: intravenous ceftriaxone, Omnicef 300 mg BID, Zithromax 250 mg BID, 500 mg BID and Tindamax 250 mg QD (Saturdays and Sundays only), Bactrim and Mepron. Despite this, her symptoms continued and the Cunningham Panel™ of tests was ordered.

Cunningham Panel™ and IVIG

“The Cunningham Panel was ordered to assess the presence of antineuronal antibodies against specific neuronal receptors,” the authors write. “If the Cunningham Panel is positive or strongly positive, that would be an indication that one has an autoimmune problem that needs to be treated with IVIG, as well as antibiotics,” explains Jones.

READ MORE: Highlights from the case report

Panel results indicated the patient had elevated levels for 3 out of 4 autoantibodies: Dopamine D1 Receptor (DRD1), Dopamine D2L Receptor (DRD2L), and Tubulin (TUB).

“Based upon the patient’s Cunningham Panel tests results, the decision was made to prescribe IVIG,” the authors write.

“Over a span of 31 consecutive months of treatment with various antimicrobials and 3 courses of IVIG she experienced complete remission and remains symptom free at the time of this publication.”

Outcome

“Currently this patient appears to be fully recovered and has been discharged from the care of the pediatric Lyme disease specialist. She is asymptomatic and performing academically at the “top” of her class according to her mother,” the authors write.

According to Jones, “multiple concomitant infections may be involved and require treatment to effectively resolve symptoms. Improvement in neuropsychiatric symptoms does not typically occur unless all co-infections are addressed and resolved.”

This podcast addresses the following questions:

  1. What is Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections (PANDAS)?
  2. What are the typical symptoms of PANDAS?
  3. What are the similarities between Lyme disease, PANS and PANDAS?
  4. Why was Lyme disease and other tick-borne illnesses considered?
  5. Why was the name Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) introduced?
  6. What is the Cunningham Panel™ of tests and why was it ordered?
  7. What tests did the girl have that supported the diagnosis of a tick-borne illness?
  8. Can you discuss the range of symptoms this patient experienced?
  9. Can you discuss the girl’s treatment for PANS?
  10. Can you discuss the girl’s treatment for Lyme disease, Bartonella, and Babesia duncani?
    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. Case Report: PANDAS and Persistent Lyme Disease With Neuropsychiatric Symptoms: Treatment, Resolution, and Recovery. Cross A., Bouboulis D., Shimasaki C., Jones C.R. Front. Psychiatry, 02 February 2021
  2. Bransfield RC. Suicide and Lyme and associated diseases. Neuropsychiatr Dis Treat. 2017;13:1575-1587. Published 2017 Jun 16. doi:10.2147/NDT.S136137.

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For more:  

Sometimes the Memory is Better Than the Real Thing

https://globallymealliance.org/sometimes-the-memory-is-better-than-the-real-thing/

By Jennifer Crystal

In last week’s post, I talked about the various dreams I had during different stages of my battle with tick-borne illnesses. Some were hallucinogenic nightmares. Some were meaningful. And some gave me a simple message of rest. Hardest to endure were the dreams that reminded me of activities I could no longer do and feelings I no longer experienced. These dreams left me longing for my old life.

In my waking hours, I also longed for healthier days.  I kept talking about getting back on track: getting back to work, back to my apartment that I’d given up to move in with family when I became too sick to care for myself, back to the life in Colorado I’d left to convalescence in my home state of Connecticut. When I finally did achieve remission, I even threw a big “Back to Life” party.

Illness is not the only challenge that makes us long for the past. Whether healthy or sick, simply growing older makes many people nostalgic for “the good old days.” Young professionals remember the ease and fun of college. New parents remember the freedom of being newly married. The elderly long for the stamina of their youth. These days, we all long for our pre-pandemic lives.

It’s easy to view the past through rose-colored glasses, forgetting that college also meant long hours of studying; that the first year of marriage can be the hardest; that youth comes not just with stamina, but also with financial and emotional stresses. Our memory of a time or event might be brighter than what the experience actually was.

When your life is changed indefinitely or irrevocably, this can actually be a good thing.

Let me give a very simple example. When I went on the “Lyme diet,” I craved my favorite treats. I was strict about not eating gluten or sugar, but boy, did I miss them. For three years I didn’t touch chocolate. All I wanted was a bowl of ice cream. Sometimes I even dreamed about it.

One day my mom came home with a chocolate milkshake from my favorite ice cream shop. “How could you drink that in front of me?” I whined.

She held it out. “Take a sip. It won’t kill you.”

I hesitated only for a moment and then reached for the straw, taking a long sip of what I thought would be a delicious indulgence.

It was disgusting.

The milkshake tasted so sickeningly sweet that I immediately spit it out in the sink. I’d gotten so accustomed to not consuming sugar that even a small amount of it tasted terrible to me. After that, I never craved a milkshake again.

I am so glad I took that tempting sip that day, because it showed me that sometimes the memory of something is better than the real thing. Those memories are sweet and real. We experienced them and we should look back on them happily. But they belong in the past. One sip of a milkshake helped me reframe my entire perspective on what I was actually hoping to achieve with treatment for Lyme disease, babesiosis, ehrlichiosis and chronic Epstein-Barr virus. I realized that the goal was not actually to go back; it was to move forward in the context of my illnesses, to shift from surviving to thriving, even though that meant making certain adaptations to my lifestyle.

Since then, I’ve found many new treats that work within my dietary restrictions, including naturally-sweetened chocolate ice cream that may even taste better than the “real thing.” I never would have discovered all of the options available if I’d spent my time hankering for a treat I could no longer have. This doesn’t mean we should give up on dreams of the past entirely. I have regained my ability—albeit in moderated ways—to do many of the activities I loved in my pre-illness life. I have gone back to work, though not on the 9-5 schedule I once led. My new schedule is more flexible, and works better for my needs. Once I stopped clinging to the idea of my old life, I opened myself up to opportunities I never knew were possible.

A friend recently asked me, “When the pandemic is over, do you think people will still wear masks when they’re sick?” I replied that I hope they do (or better yet, that they’ll stay home). We won’t ever fully recover to our pre-pandemic state—certainly, we can’t get back the more than 400,000 lives that have been lost—but we have learned some lessons that can make things better in the future. We can make changes that we otherwise wouldn’t have thought to make. Hopefully, we’ll take better care of ourselves, and be more mindful of how our actions affect others.

These improvements will be worthy of celebration—with a milkshake!

To read more blogs click here.

jennifer crystal_2

Opinions expressed by contributors are their own.

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

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**Comment**

If you are sick, stay home if you can and recover. This is not new, sage advice – it’s common sense.  Masks were never intended to be worn 24/7 and with regard to infections, don’t do anything but impede air flow to you causing harm, as well as harbor germs.  I’ve posted on this repeatedly – with science.  We should return to our pre-pandemic state because germs have always lived within us and around us.  This too is not new.

Sadly, lives have always been lost. COVID deaths should be no more or no less important than other deaths.

The question that haunts me is how many lives could have been saved due to the mishandling of tick-borne illness?  This question isn’t even on our public authorities’ radar.

ILADS February Newsletter

https://mailchi.mp/ilads.org/member-newsletter-august-687499?e=14b78402e1  Newsletter here

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ILADS Newsletter February 2021

In this issue