Help Wendy with Lyme Literate Treatment

Hello, my name is Heidi and I am a volunteer Mentor with the Global Lyme Alliance and a fellow Lyme Warrior. I want to share Wendy’s story with you today.

Wendy is an extraordinary human being. She is a mom to two amazing boys, a loving daughter, a trusted friend, a dedicated school teacher, a compassionate volunteer, and a lover of yoga, photography, nature, and adventure. Her smile in these pictures is only a glimpse into her normal joy and passion.

However, starting in winter of 2020, her blessed life was challenged by health concerns that Wendy never saw coming. It was like she woke up one day and started having a terrifying array of symptoms out of the blue; beginning with fever, rash, and vomiting. Shortly following was rapid weight loss, a scary period of partial paralysis, hypertension, and sudden blurry vision, all when the world was shutting down due to Covid. Here are even more of the debilitating symptoms she was faced with and others she continues to deal with on a daily basis to give you an idea of how overwhelming it all is :

Livedo Reticularis (changes from blood flow)

Periods of Pancreatitis

Joint pain and swelling

Persistent abdominal pain

Intense fatigue and brain fog

Shortness of breath - Dyspnea

Blood Pressure and heart function changes

**On top of all, there is also a pituitary tumor showing dysfunction with harmful effects and possible neuroendocrine tumor growth (upcoming Pet Scan)

The scariest part was that physicians were not readily able to find an answer for the sudden onset of multi-systemic symptoms. After visiting 30+ doctors in different specialties, multiple ER visits, a spinal tap, an abundance of diagnostics, and volumes of bloodwork, only some pieces of the puzzle were emerging in the 2 year period. She was tenacious (and still is) about going to every needed specialist and challenging them to find the root cause.

Tests for Lyme disease (tick panels typically used have limited strains causing diagnosis delays) and other possible causes came back negative, and not until being ill for over 2 years was Borrelia Miyamotoi infection finally detected by an ID doctor. It is an aggressive spirochete bacteria carried by ticks that readily affects tissues, organs and overall health, especially when not detected early. Wendy then received an Iv course of antibiotics, and I am sure she was relieved to think that this treatment would resolve her issues. Regrettably, this was not the case and she continued to decline. She carried on to desperately find answers, as having your life ripped out from underneath you takes a toll in every way. As a mother, the worry and pain is beyond measure. At this stage of the game, Wendy’s health history and complications have become so massive and overwhelming that it is practically a full-time job to keep up with and present to doctors. Being too sick to work is devastating for a committed and dedicated professional who loves teaching and learning and naturally wants to resume every part of her life.

This all has been a disheartening education for Wendy on how Lyme and other tick-related illnesses are debated on and not well-practiced yet by the medical community, especially regarding treatment protocol. There are even polarizing views around late-stage Lyme and tick disease, which leaves patients stuck in the middle and often without much needed care. We have all been taught that medical professionals and insurance are there to assist us in healing ourselves, which does not always hold true for patients with tick-borne disease and other chronic conditions. One has to tirelessly self-advocate and face ill-informed doctors while the disease progresses. New York and Long Island are becoming well-known meccas of tick-borne illness, so it is astonishing that in these areas, doctors are not well-educated to identify and screen for emerging species, including Miyamotoi, Powassan, and Babesia.

A photo taken by Wendy at her local beach

Now she has learned that a “Lyme Literate Physician” is needed for proper analysis and treatment of her late-stage Borrelia tick disease and potential co-infections. Fortunately, she has found a highly skilled and research-based physician in Upstate NY who is a pioneer in the field. Unfortunately, there is a dead end with health insurance since the medical community cannot agree on Lyme & co-infections, so they do not cover Lyme literate physicians, their testing or their treatments. Faced with paying out of pocket for her first year of treatment, it could cost her upwards of $15,000.

Rapid increase of cases on Long Island and NE

That brings me to why we are all here on this page today. Wendy is in need of your support and generosity. I am asking for your financial support to help my friend and mentee get the proper treatment she needs from a lyme literate physician who specializes in tick borne illness. I also have suffered with late-stage Lyme disease and 2 other co-infections and joined the GLA Mentor program to support another. Through our long-distance relationship and heartbreaking conversations, I learned that my story and struggle are so similar and I too had to ask others for financial assistance with lots of love and grace. It is extremely hard to reach out for help when you are used to being on the giving end. Please know how much your support and love means in facing this insidious disease. Let’s be a part of giving Wendy the hope she needs to find health and treatment that can make a difference.

With Much Love,

Heidi

Volunteer Mentor w/ Global Lyme Alliance

Fellow Lyme Warrior

&

Cindy-

close friend and colleague