Yet another Lyme disease victim !

Hello again,

Below is another fine article which describes another's battle with Lyme disease. It is another testimony that progress is slowly being made but that there is a long way to go to finding a cure.

Be well,

Richard

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News
Long road back: Shippensburg girl’s battle with late-stage Lyme disease
Photo by C.J. Lovelace
Documentary to be shown this weekend details dangers, research
By C.J. LOVELACE
Associate Editor
Published: Wednesday, June 23, 2010 8:24 AM EDT
A tiny creature carrying an immensely devastating disease could be found right in your backyard.

According to the Centers for Diseases Control (CDC), Pennsylvania has recently become to most endemic region for Lyme, a cureless disease that in its late stage, carried by the bite of a tick, is very difficult to diagnose and treat because its symptoms are so diverse.

If caught late, it becomes more and more difficult to understand and defend against.

Four years in the making, one Shippensburg family, just one of many, has experienced the difficulties of battling Lyme first hand.

By the age of 16, Barry and Diana Holtry’s daughter, Heather, was progressively becoming more ill at the hands of this disease. Heather said her family remembered removing the first engorged tick from the top of her head when she was 5 years old in the mountains of Massanutten, Va. She wasn’t exactly sure if this was when she became infected, but what they experienced over the next few years was difficult to say the least.

Lyme disease is bacterial infection, complicated when co-infections are involved, which cause inflammation pain and swelling all over the body if not treated. It created confusion for the Holtrys, their doctors and great amounts of pain for Heather.

When the root answers to her physical symptoms were not able to be determined locally, the family was forced to travel long distances, as far as Connecticut and Washington, D.C., to meet with doctors and specialists in efforts to figure out what was affecting Heather’s body.

For Heather, when she was finally diagnosed with Lyme disease, it was a relief.

“At first, I was relieved because my journey had started when I was very, very young and we didn’t know what we were dealing with,” she said. “A diagnosis, to me, meant we could move forward … but that was kind of before we understood the whole picture and how deep it goes in the treatment and the effect it can have on your body. I have only been able to come as far as I have because of my faith and the way the Lord answered our prayer for guidance.”

If caught early, Lyme disease can be treated and managed in a fairly effective manner, but if it’s caught late, like in Heather’s case, it allows the disease to disseminate into vital organs, tissues and it “becomes a multi-system and multi-symptom involvement disease,” explains Diana.

It affected every single body system inside their daughter’s body, from her brain and nervous system to her cardiovascular system. Heather’s case was complicated by several co-infections and the Holtrys did not see evidence of two of the co-infections for the first year of her treatment because of the suppression to her immune system.

Heather began to have difficulty managing even every day tasks, such as walking, eating, sleeping. She was unable to string a sentence together and she developed short-term memory loss. Her mother and father recall several episodes when Heather suffered seizures, temporary paralysis and an endless list of symptoms because of the spirochetal load throughout her body.

Heather endured swelling of the lining of the brain and lost her vision until the swelling was brought under control. Migraines, joint and muscular pain, extreme fatigue, and the list goes on, said Diana.

It left the Holtrys with few places to turn for answers.

Because of the current time in history of Lyme, a politically driven disease, and the fact that science and new types of treatment are continuing to emerge, Heather’s parents said that the family became more like researchers.

“Barry and I did not know anything about Late stage Lyme; could not imagine that this disease could cause so many life-threatening complications, so much pain … but we prayed, we researched and we were led to our answers,” said Diana. “It is a long, journey home, but, Heather’s doctors tell her she is ‘stellar.’ We know her to be a beautiful role model of strength and faith. She is a warrior and our come-back kid. She is not alone; we have had the humble privilege of meeting many young people and people of all ages and walks of life across this nation who have suffered in similar ways because of the missed diagnosis.”

With the help of a diversified unit of doctors and specialists working together and constantly evolving information, Heather slowly has been gaining ground. She is on a long-term treatment regiment to include several physical therapies each week. Their goal is cleansing her body of the deadly pathogens that had affected so many of her body systems and a rebuilding of her nearly destroyed, severely suppressed immune system.

Today, Heather seems like your normal almost-20-year-old girl. She is in her second year as a part time student in the Fashion Management/Retail Bachelor’s program at the Art Institute of Pittsburgh and is planning a Lyme disease charity runway fashion show in September that she plans to put on as a fundraiser to benefit a much needed grant funded research project through the Lyme Disease Association (LDA).

Diana says her daughter is on an anti-inflammatory diet and, because of a Lyme-induced chemical sensitivity, her doctors have determined her drug resistant. She is on a specific and intense protocol targeted at pathogens, toxicities, detoxification and laboratory identified deficiencies. Over time, Heather’s protocol continually evolves under the watchful eye of her medical team to keep her late-state Lyme under control, but because of lack of a cure at this stage, the fight against this disease has a long ways to go.

Heather’s case may seem unique, but it truly is not. According to CDC, only about 10 percent of reported Lyme disease cases are true diagnoses.

For this reason, the Holtry family now serve as volunteer national Lyme disease educators and on the invitation of the Shippensburg Church of the Nazarene and the Shippensburg Evangelical Free Church will be presenting a documentary entitled “Under Our Skin – The Untold Story of Lyme disease” this Saturday, June 26, from 3 to 6 p.m. at Premier Events, 429 E. Orange St., Shippensburg. Doors will open at 2:45 p.m.

The documentary, illustrated through several case studies, details the science and politics of the disease, teaches the viewer more about the disease, but does not instill fear.

“We do not educate by fear; we equip,” says the Holtry family. “We support what we present with science. We work with top ILADS (International Lyme and Associated Diseases Society) Lyme doctors, researchers, molecular biologists … this is what a parent will often have to go through in order to understand the right approach for their child, or if it’s a personal case, for their individual care.”

A “360-degree documentary,” according to the Holtrys, the film really educates viewers, creating a personal feel that doesn’t just relate facts.

“This is so personal yet, packed with truth,” said Heather.

“We need to be equipped to be able to advocate for our health and wellbeing,” Diana continued. “I think differential diagnosis is imperative because it’s a very confusing disease; physicians and citizens alike simply need to be educated.”

The documentary, which is not suitable for children but okay for teens, is free to the public and reveals the shocking human, medical and political dimensions of Lyme. Recognized nationally within a month of its premiere, it is produced by Open Eye Pictures.

Reservations are necessary to ensure adequate seating for the showing. E-mail SCentralPaLymeForum@yahoo.com to sign up. Be sure to include your name, phone contact information and the number in your party. If you do not have e-mail, call 717-532-7402.


Copyright © 2010 - The Shippensburg News-Chronicle

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