The State of Lyme Disease Research and Tick-Borne Disease-Related Legislative Action
Date & Time
Nov 30, 2023 06:00 PM in Central Time (US and Canada)
Description
Join us Thursday, November 30 at 7 PM ET for an update on the State of Lyme Disease Research.
Description:
Bonnie Crater and Nicole Bell with the Center for Lyme Action will present an overview of their recently released policy paper – “The State of Lyme Disease Research in the United States.” The research paper explores the progress that has been made to find a cure for Lyme and tick-borne diseases, making 26 recommendations for research investments by the federal government and calling for an annual investment of $500 million – $1 billion to find a cure. The plan outlines five areas of opportunity in tick-borne disease research, including improving fundamental knowledge, detection, prevention, treatment, and research tools and resources.
It’s crucial to acknowledge and treat congenital Lyme disease
By Kristina Bauer
Growing up in Illinois, I loved athletics and spending time outdoors exploring, hiking, camping, and boating. But I didn’t understand how important it was to prevent tick bites. My mom would check my head when I came in from playing in the woods, sometimes pulling off multiple ticks at a time.
I spent the next 30 years going from a very sick state, back to being athletic, and then going back to sick, not realizing what had resulted from those childhood tick bites.
Many doctors told me I was the healthiest sick person they knew, and I should increase my dose of treatment for Crohn’s disease even though I did not have typical Crohn’s symptoms. Truth is, they weren’t pulling the right labs.
I had flu-like symptoms, extremely painful fibromyalgia, migrating joint pain, frequent infections, and intestinal ulcers that would not resolve with prednisone and mesalamine drugs. Sixteen doctors missed my hallmark symptoms of Lyme disease because they hadn’t been trained in medical school about the symptoms and how to diagnose it properly.
I knew I was sick but got a pass from so many experts that I hoped I could lead a normal life. After college, when I married and had children, the health problems continued. By then, I was living in Texas.
Lyme disease and co-infections
In time, I visited the best-known Lyme specialist in the state and found I tested CDC-positive for Lyme and several co-infections. My LLMD made sure I tested my kids as well, although we knew that Lyme testing is not always definitive. Although none of my kids had ever had a known tick bite, they all had compromised immune systems—getting sick often and taking a long time to get well.
My sickest child also experienced periodic “absence seizures”— brief, sudden lapses of consciousness—yet had no bands on the Western blot Lyme test at all. Another child was positive through IGeneX Labs. The other two had only a few positive bands—but given a thorough history and taking into account the mother’s health, were given a clinical diagnosis of Lyme.
We treated all five of us over the course of 10 years, an expensive and gut-wrenching process.After about seven years, the kids and I were all feeling better. Over time, my kids resumed school, work, and enjoying their lives.
The heartache of watching our friends being active while we were stuck in bed, feelings of abandonment by the medical care system, and a lack of resources for the Lyme community is what fueled me to start advocating for congenital families.
The need for education
I thought, “how could this happen in America, and who is speaking for us?” I vowed to do what I could to change that by advocating, educating, and legislating for pediatric and congenital Lyme patients, and opening access to care for treatments. In time, I started the Texas Lyme Alliance and started speaking on behalf of congenital families because there was not a lot of discussion on the topic. I conduct interviews with leading clinicians and researchers for treatments and diagnostics to educate families and physicians alike.
I graduated from the Institute of Integrative Nutrition Health Coaching, and now connect people to resources for complex Lyme treatment all over the world. While I do not provide medical advice, I love unraveling the mystery of treating Lyme disease, and enjoy passing on my knowledge I’ve learned and my experience from treating with some of the best doctors from Texas to Germany.
This interview with Dr. Ronald Wilson can be passed along to your family, friends, and physician to help them understand how to test for Lyme, and how crucial it is to treat all the forms Lyme goes into to evade treatment and the immune system.
Dr. Wilson serves on the Medical Board of Texas Lyme Alliance.
Congenital Lyme, a Dr.’s perspective. Dr. Wilson is a board certified OBGYN of 31 years, delivered 6,000 babies, became a Lyme patient then turned Lyme doctor. He had treated 5,000 Lyme patients over 15 years. Dr. Wilson is a Harvard graduate and the President of Education for ILADEF, the international authority in guidelines (ILADS) for treating tick born illness. Thank you Dr. Wilson and all the Lyme docs around the world for helping us get our lives back! Interviewed by Kristina Bauer, founder Texas Lyme Alliance and Communications Expert GOTCHA.
You can see more of Kristina’s interviews on the website of the Texas Lyme Alliance.
FULL BODY NUMBNESS AND TINGLING DUE TO LYME DISEASE
In their article “Lyme Disease Presenting With Interesting Neurological Features of Weakness and Hyporeflexia: A Case Report,” Semy and colleagues describe the unique case of a young woman with Lyme disease who exhibited solely neurologic features of numbness and tingling throughout her body. [1]
The 25-year-old female developed numbness and tingling throughout her torso, which later spread to her entire body. She presented to a neurology clinic with complaints of numbness and tingling that had been ongoing for the past 4 weeks.
She did not recall a rash or tick bite and had not recently travelled.
The woman did not exhibit any of the typical symptoms seen with Lyme disease such as “arthralgia, fever, rash, or regional lymphadenopathy but in fact exhibited decreased reflexes, numbness, and tingling particularly near the hypogastric region making it distinct from the classical presentation,” the authors wrote.
The numbness and tingling began on the right side of her stomach and radiated to her back and later spread to her entire body. “The tingling was not associated with any burning or pins and needle sensation,” the authors point out.
The woman was prescribed steroids and an albuterol inhaler. But her symptoms did not improve.
“She especially became alarmed when she could not hold her toddler anymore and ended up dropping the child secondary to her numbness and tingling.”
Motor examination revealed that the patient had “decreased tone more significant in the upper limbs (3/5) than in the lower limbs (4/5) along with hyporeflexia in the biceps, triceps, patellar, and Achilles,” the authors wrote.
A lumbar puncture revealed elevated protein concentration (148 mg/dl; normal: 15-60 mg/dl).
The Western blot test for Lyme disease was positive, and the woman was prescribed IV ceftriaxone for 3 days before transitioning to oral doxycycline.
“At the time of discharge, the patient was able to move all extremities spontaneously and ambulate with a normal gait,” the authors wrote. At her follow-up visit, she exhibited only minimal residuary weakness.
Authors’ Conclude:
“Physicians need to be aware of the non-pathognomonic timeline of the disease at presentation since the clinical presentation of the disease can differ significantly from one individual to another.”
Semy M, Lee-Kwen P, Semy S (August 10, 2023) Lyme Disease Presenting With Interesting Neurological Features of Weakness and Hyporeflexia: A Case Report. Cureus 15(8): e43296. doi:10.7759/cureus.43296
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**Comment**
This woman needs long-term follow-up. I wouldn’t be shocked at all if these symptoms came roaring back, which of course would necessitate treatment that our corrupt government states is “dangerous,” even though the alternative is deadly.
Aussie Patients Calling For Doctors To Recognize Lyme Disease
The Project
Sept., 2023
Aussies are calling for doctors to recognize that there is Lyme disease in the country as medical professionals vehemently deny that new infections are occurring.
The emperor truly has no clothes on. Time to say it like it is.
Pharmacists now able to treat another common ailment
03 October 2023
FREDERICTON (GNB) – The provincial government is adding to the list of common ailments that pharmacists are publicly funded to treat, as part of an effort to give New Brunswickers better access to care. Starting today, pharmacists are funded to treat conjunctivitis, sometimes referred to as “pink eye.” This follows an announcement in May that residents could access publicly funded care from participating pharmacies for the following conditions: contact allergic dermatitis; cold sores; mild to moderate eczema; gastroesophageal reflux disease; impetigo; Lyme disease prevention after a high-risk tick bite; and mild acne. The Department of Health estimates 1,100 patients visited a walk-in clinic for conjunctivitis in the past year. “We know that many families are affected by conjunctivitis, and they need to see someone for relief,” said Health Minister Bruce Fitch. “To ensure that New Brunswickers can see the right care provider for the right service at the right time, we are working with our highly skilled pharmacists, who care for people in their communities, to make it easier to access these needed services.” Pharmacists in Quebec, Ontario and Saskatchewan are already able to treat conjunctivitis. New Brunswick pharmacists are now able to assess and prescribe for 12 common ailments and services to divert patient traffic from emergency rooms, walk-in clinics or other primary care providers. More information about publicly funded services that pharmacists can offer is available online. People are advised to ask their local pharmacist which services are available, as it is not mandatory for every pharmacist to treat all minor ailments. While the cost of the consultation for certain ailments is covered, patients are still responsible for the cost of prescribed medications, as well as any fees for injections provided by pharmacy professionals.
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**Comment**
IMO this press release opens a big can of worms.
What is a high-risk tick bite?
Similarly to the mythology that there is some sort of “grace period” for tick bites, every tick bite I’m aware of has the potential to be highly risky in that you could become infected with one or more pathogens that could drop you to your knees in agony and deplete you of all your money and joy.
The fact they are listing Lyme disease, pink eye, eczema, impetigo and gastric reflux in the same sentence shows this is still not being taken seriously.
The article admits that Lyme disease is a “common” ailment, but gives far more weight to pink eye!
These pharmacists are not receiving any education,just money – which means they will not be informed about what they are doing. While the press release doesn’t state what this “treatment” looks like, I’m going to venture a guess that they will prescribe one or two pills of doxycycline, which research has shown to be ineffective in preventing Lyme disease.
In short: more garbage in, more garbage out.
COVID has given pharmacists more power in that they are now allowed to give “vaccines.” Pharmacists are not doctors and do not have a patient’s medical history in front of them. Nothing replaces one on one interaction between a patient and a doctor where a doctor is privy to a patient’s history.
This “Lyme treatment” bandaid will do little to relieve patient suffering.
Madison Area Lyme Support Group 