Archive for the ‘Lyme’ Category

Kids Are Losing Their Childhoods to Lyme and Other TBD

https://www.lymedisease.org/kids-losing-childhoods-to-lyme/

Kids are losing their childhoods to Lyme and other TBD

My name is Olivia Goodreau. I am the founder of the LivLyme Foundation, and inventor of the free global app TickTracker and my new free symptom tracking app, the LongHaulTracker.

Six years ago when I was 12, I spoke at the very first Tick-Borne Disease Working Group meeting in Washington, DC.

I am so grateful for the opportunity to speak at the first and the last Tick-Borne Disease Working Group meetings.

I am here today to ask all the members to please not forget about the children that have lost their childhood to tick-borne illnesses. The hundreds of thousands of kids who right now are being misdiagnosed with behavior issues, autism, chronic fatigue, or are just told they are making it up for attention.

I was and am one of those kids. It would take 18 months and 51 doctors before I had a positive Lyme test.

During the 18 months I had hundreds of blood draws, liver biopsy, MRI, cat scans, spinal taps–the list goes on. I was told I had Wilson’s disease and would be dead at 40. Then I was told I just needed to drink more water. Finally, the doctors said I was making it up for attention.

I don’t know a single child that wants to be sick. My tick-borne illnesses robbed me of my childhood, took away all of my sports, my friends, I was bullied, and I missed months of school.

Looks can be deceiving

People to this day say, “But she looks fine!!” Yes, I might look fine, but underneath my skin there is a war raging. Lately my brain fog, my word scramble and my tremor in my right hand have become some things I can’t hide from my friends & family. It never ends.

In the US, 200 kids are diagnosed with Lyme disease every day. That is four school buses of children a day. Think how many are going misdiagnosed every single day.

At LivLyme we asked 767 grant applicant families, from 49 different states, three questions:

  • Out of 767 families, 409 families have more than one child with a tick-borne disease.
  • Out of 767 families, 307 moms and 61 dads have Lyme disease.
  • Out of 767 families, 287 moms believe they transmitted Lyme disease to their child in utero.

We will have generations of kids to come that will be struggling with tick borne diseases, whether they were bitten by a tick or contracted Lyme in utero.

What I ask is that you help save the next generations of kids. It’s what I said six years ago, but we need a better tests, better drugs, and better doctor education.

I lost my childhood to one tick bite. I ask this group to help save the children from the devastation of a tick-borne illnesses. I ask the Federal Government to make it a priority to protect innocent kids from ticks and the diseases they carry. I ask Congress to implement the recommendations of the TBDWG immediately.

All kids deserve the opportunity to have a healthy childhood, free from tick-borne diseases, and so that they can just be a kid.

Thank you for your time, and always check for ticks.

Related Posts:

  1. NEWS: Dr. Jones named “Ray of Hope”; kids to make it a “star-studded” gala
  2. Helping chronically ill kids dig deep for healing
  3. New support group for parents of kids with Lyme
  4. TOUCHED BY LYME: Parenting kids with Lyme–“one day at a time” and a two-track approach

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**Comment**

Another unbelievably frustrating story in Lymeland.

Unfortunately, the Federal government is not our answer, nor will it ever be.  It is part of the problem.

We’ve helped fund our own research through the Federal government for decades to no avail. We need to fund our own independent research in a parallel world to get our own answers.

Time for change.

For more:

Category:

Activism, Lyme

Acrodermatitis Chronica Atrophicans

https://pubmed.ncbi.nlm.nih.gov/33085436/

Acrodermatitis Chronica Atrophicans

Anita Gade 1, Taraneh Matin, Richard Rubenstein 2, Carolyn A. Robinson
In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2022 Jan.
.
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Excerpt:

Acrodermatitis chronica atrophicans (ACA) is a late and chronic manifestation of Lyme borreliosis (LB). ACA predominantly involves the distal portions of extremities and is characterized by chronic cutaneous atrophy. Unlike other skin manifestations of Lyme disease, including erythema migrans (EM) and borrelial lymphocytoma (BL), ACA does not spontaneously resolve. If untreated, ACA may progress from bluish-red discoloration and inflammation to chronic atrophy and fibrosis, with the late-stage being more treatment-resistant.

ACA was first described in 1883 by Buchwald in Germany, and cases were later reported in 1895 in North America. The diagnosis of ACA is based on clinical presentation, as well as serologic testing and histopathologic confirmation. Recognizing ACA is often challenging due to variable latency in disease onset following the primary borrelial infection, and lack of symptoms leading to delay in seeking treatment.

Lyme borreliosis is the most common vector-borne disease in the northeastern United States. It is a multisystem disease caused by the spirochete Borrelia burgdorferi.It is transmitted to humans via an Ixodes tick bite. There are 3 skin manifestations of LB: Erythema migrans (stage 1) with a characteristic “bull’s eye rash,” which, if untreated, can be followed by early disseminated infection, borrelial lymphocytoma (stage 2) along with neurologic and cardiac abnormalities, and late infection, especially arthritis in North America or acrodermatitis chronica atrophicans (stage 3) in Europe. Acrodermatitis chronica atrophicans is the most common late and chronic manifestation of LB. Approximately 20% of patients with ACA have a history of spontaneously healed EM, usually on an extremity where the ACA lesion developed 6 months to 8 years later.

Sections

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**Comment**

While ‘the powers that be’ continue to want to confine this complex illness within numerical stages and a “one size fits all” box, please know that patients have jumped from stage to stage in no particular order, with some requiring much longer courses of antibiotics/treatments.

For more:

Category:

Lyme, research, Ticks, Transmission

LymeMIND Videos Now Available for Replay

https://www.lymedisease.org/lymemind-replay-youtube/

LymeMIND videos now available for replay on YouTube

Last month’s LymeMIND 2022 conference brought together leading researchers, physicians and advocates to discuss a wide variety of topics related to the diagnosis and treatment of Lyme and other tick-borne diseases.

The annual event is sponsored by the Steven and Alexandra Cohen Foundation, the largest private funder of Lyme and tick-borne disease research in the United States.

Now, videos from that event are available to the public on You Tube.

In the following segment, three prominent Lyme disease advocates discuss “Finding your voice and fighting for the future.” Speakers are:

  • Lorraine Johnson, CEO of LymeDisease.org and principal investigator of MyLymeData
  • Pat Smith of the Lyme Disease Association
  • Dr. Betty Maloney, of Partnership for Tick-Borne Diseases Education
  • Ben Nemser of the Cohen Foundation moderates the panel

http://

LymeMIND7 – 2022 – Finding Your Voice and Fighting for the Future

Other portions of the LymeMIND conference can be accessed here.

Category:

Activism, Lyme

Is MS an Infectious Disease?

The following link contains a collection of research on MS and infections including fungus, Lyme, parasites, and viruses.  Highly recommend.  The website is Pam Bartha’s who’s life was turned upside down at the age of 28 when she was diagnosed with MS.  She lost vision in one eye, was weak and had tingling in her legs, insomnia, and severe fatigue and headaches.  She was told by doctors there was nothing she could do but wait around and become disabled.  Her mother in law gave her a book that set her on a healing journey that continues today.  The book was “The Yeast Connection” by Dr. Crook.  In it he shared that he believed many diseases are actually caused by infections, especially the GI tract.  This doctor observed that when he treated the infections, his patients recovered. Go here to read Pam’s story as there are golden nuggets for all within and great recommendations.

Pam is a wellness researcher, educator and coach with a BS who is a certified teacher.  She offers a free consultation and personalized training on how to get your health back.  (I have no affiliation with this program and receive no monies)

https://livediseasefree.com/ms-infections/#multiple-sclerosis-and-lyme-disease

Multiple Sclerosis Infection – Is MS an Infectious Disease?

The following is an excerpt from Pam’s website.  Go to link for entire article

Multiple Sclerosis and Infection

Could Multiple Sclerosis be caused by infection? These studies and articles offer compelling evidence. Contact Us for more information.

Multiple Sclerosis and Infection
Multiple Sclerosis and Fungus
Multiple Sclerosis and Lyme Disease
Multiple Sclerosis and Parasites
Multiple Sclerosis and Viruses

1. Commensal microbiota and myelin autoantigen cooperate to trigger autoimmune demyelination.
Nature. 2011; 479(7374): 538-41. DOI: 10.1038/nature10554.

This study shows that microbes that live in the body (in particular the GI tract) are an essential factor in triggering the autoimmune response in MS and other diseases.

“Active multiple sclerosis lesions show inflammatory changes suggestive of a combined attack by autoreactive T and B lymphocytes against brain white matter. … The stimuli triggering this autoimmune conversion have been commonly attributed to environmental factors, in particular microbial infection. … We show that the commensal gut flora… is essential in triggering immune processes, leading to a relapsing-remitting autoimmune disease…“

2. Role of pathogens in multiple sclerosis.
International Reviews of Immunology. 2014; 33(4): 266-83. DOI: 10.3109/08830185.2013.823422.

This study states that “infectious pathogens (disease causing microbes) are the likely environmental factors involved in the development of MS.” It also identifies various microbes that are involved in the development of Multiple Sclerosis infection, which include various bacteria, parasites and viruses.

“Although the etiology of MS is unknown, genetic and environmental factors play a role. Infectious pathogens are the likely environmental factors involved in the development ofMultiple Sclerosis infection. Pathogens associated with the development or exacerbation of MS include bacteria, such as Mycoplasma pneumoniae and Chlamydia pneumoniae, the Staphylococcus aureus-produced enterotoxins that function as superantigens, viruses of the herpes virus (Epstein-Barr virus and human herpesvirus 6) and human endogenous retrovirus (HERV) families and the protozoa Acanthamoeba castellanii. Evidence, from studies with humans and animal models, supporting the association of these various pathogens with the development and/or exacerbation of MS will be discussed along with the potential mechanisms including molecular mimicry, epitope spreading and bystander activation. In contrast, infection with certain parasites such as helminthes (Schistosoma mansoni, Fasciola hepatica, Hymenolepis nana, Trichuris trichiura, Ascaris lumbricoides, Strongyloides stercolaris, Enterobius vermicularis) appears to protect against the development or exacerbation of MS… A complex interaction between the CNS (including the blood-brain barrier), multiple infections with various infectious agents (occurring in the periphery or within the CNS), and the immune response to those various infections may have to be deciphered before the etiology of MS can be fully understood.”

(See link for article)

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For more:

MS is another label that needs a better definition.  Since so many things can cause/exacerbate it, it’s a highly individual issue that needs to be approached as such.  There is no four-cornered box with this beast and you must be willing to go down many rabbit-holes to find answers.  This is a journey, not a destination.  There may be many issues that must be addressed in order to achieve health – just like with Lyme/MSIDS.

Category:

Activism, Candida, Lyme, Parasites, research, Viruses

Crypto-Infections Conference 2023: Lyme Disease & Other Hidden Infections

https://www.lymeresourcecentre.com/EUCIC2023

CRYPTO-INFECTIONS CONFERENCE 2023: LYME DISEASE & OTHER HIDDEN INFECTIONS

An invitation to the Third European

CRYPTO-INFECTIONS CONFERENCE: LYME DISEASE &
OTHER HIDDEN INFECTIONS BACTERIAL PERSISTENCE

Catherine Mc Auley Centre, 21 Nelson Street, Dublin 7, Ireland

SAVE THE DATE!

Friday 19th of May to Saturday 20th May 2023

HYBRID ATTENDANCE IN PERSON OR ONLINE

Join Zoom Meeting links will be provided before the event.

TO BOOK please use the following link:
BOOKING FORM

Aims and eligibility- Presenters can present in person or online.

Abstracts should contain original material from recent work that is not yet in publication. The conference encourages research on crypto infections as well as best practice examples and lessons learned. The theme of this year’s conference is Persistance of Infection.

Abstract categories
Please see below list of topics/ tracks available for submitted abstracts for Crypto-Infections 2023:

  1. Human studies
  2. Animal studies
  3. Epidemiology
  4. Diagnostics and therapeutics

For abstracts submitted by students, the registration for the conference will be waived, but all costs related to the conference participation should be covered by you, including flight and accommodation if you decide to attend in person.

Please send your abstract in pdf format to gavramovic@mater.ie by the 2nd May 2023. Word count limit is 250 words excluding title and authors. The abstract should contain the following sections: Title and Authors, Introduction, Methods, Results and Discussion. Authors should indicate if they wish to apply for an oral presentation or poster only

Category:

Activism, Lyme, research