Grace and Muriel Go West

Grace and Muriel Go West
OCT 18, 2007 04:14 p.m.
WILDER Network Media Team - News Staff
WILDnewsEditor@wildernetwork.org
CALIFORNIA, USA

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Grace McGuire, well known member of the ninety-nines, an organization of female aviators, is planning to travel from New Jersey to California on USA major highways with her famous airplane "Muriel", the only known remaining duplicate of Amelia Earhart's Electra L10E. McGuire's extraordinary airplane was named Muriel after Amelia Earhart's sister and life-long friend of Grace McGuire. The trip will take the pair through major US cities and small rural towns where Grace and Muriel will meet with media and members of the Lyme disease community along the way.

McGuire recently decided to make the trip when a special community of aviators in California had an unexpected vacancy and Grace and Muriel were invited to relocate to California. In New Jersey Grace and Muriel spend most of their time together at Muriel's hangar, but in California they'll be roommates. With accommodations for both, the girls will truly be inseparable and can spend more time together enjoying their favorite pastimes; aviation and restoration.

On a mission with a message
This is more than just a change of residence for McGuire; she's on a mission with a message. A dedicated Lyme disease advocate, McGuire carries with her a most profound message about the fastest growing infectious disease in America; Lyme disease kills.

As they travel across country, Grace and Muriel will meet with friends and families, victims and volunteers, who will add names to a list she will be carrying with her; a list with the names of people who have died from Lyme diseases. "Grace inspires me, I hope she travels through my area; I've lost over half a dozen friends to this terrible disease, I want to make sure they're all on her list," was the comment of one volunteer upon hearing of McGuire's plan.

Grace and Muriel had previously planned an adventure to follow Amelia Earhart's flight plan and complete a trip around the world. The duo would carry with them a public alert that Lyme disease is worldwide and more than just one disease called Lyme. But Grace was so badly infected with the bacteria that cause Lyme disease that she was unable to complete that mission and her message was never delivered. McGuire will not rest until her mission is done:

Alert the public to the silent killer that is sweeping the globe.

Accompanying McGuire and her trusted companion Muriel 'in spirit' on their journey, and topping her list of those who've died fighting Lyme; fellow pilot Dr Edward L McNeil, recently VP of WILDER Network, Inc. and Dr John Drulle, highly respected physician, literate in Lyme disease and related topics. Both fine doctors, sorely missed by family and friends, gave and lost their lives to what McGuire and others call "Lyme diseases".

Lyme disease can linger
Complexities of Lyme disease are unnecessarily complicated by extremely poor testing circumstances where according to the US Senate, the most sophisticated tests available for detecting Lyme disease miss thirty-six percent of people infected with the disease; this means that over one-third of people tested for and infected with Lyme disease will miss their only opportunity for early treatment; which is the only known cure for Lyme disease. US Senate said the ramifications of this in terms of cost and unnecessary pain and suffering is staggering. People from all walks of life experience a reduced quality of living, differing states of disability, and some die. And since tests are not able to detect the disease in the first weeks, false negative results leave more infections unchecked. Add infected individuals whose doctors may never consider an infection separate from a tick bite, without a bulls-eye rash, or outside an endemic area; and it quickly adds up.

The number of untreated Lyme and related infections nationally and worldwide is unknown and can only be estimated, and in fact, children are most at risk for these diseases. Considering the above paragraph; Indeed is it not also the growing number of unsuspecting infected across the globe that is truly staggering?

An infection of this kind left untreated may progress and while many professionals feel that a healthy immune system can put up quite a battle and it will; it is also possible for symptoms caused by medically disregarded infections to persist. Further complicating the situation; the involvement of other infections that ticks transmit, combination infections such these with multiple organisms are known as co-infections. While patients and their doctors and tests continue missing them, the infections masquerade as other illnesses like, CFS, ADD, fibromyalgia, ME, depression and others with unknown or debatable causes.

According to McGuire some people see over thirty doctors and receive a dozen different diagnoses before they meet one professional who considers an infection like Lyme. They may have had tick bites as a child or they spend time outdoors landscaping, gardening, hiking, biking, hunting, camping or with animals. Many just suddenly become progressively more ill; and often experience remissions and relapses. Commonly symptoms are described as lingering and migrating or wandering, however mild or severe. Very mild and even symptom-less infections have also been described in the medical literature. An individual recently bitten by a tick can experience an obvious, blazing bulls-eye rash at the bite site, while others have different kinds of localized rashes, disseminated rashes (all over body), or no rash at all. Anyone with tan, brown or dark skin may not see a rash or it may be under hair or can look like a bruise, spider bite or ring worm.

An intriguing investigation
Anyone continuing to experience symptoms after treatment for Lyme disease may wonder why they're still sick. An incredible debate persists among professionals regarding existence of symptoms after treatment. Mainstream medical professionals may consider a persistent infection with the bacteria that cause Lyme disease, but most medical professionals are taught that the disease is cured with three or four weeks of antibiotic and no further treatment is needed. If symptoms persist beyond treatment, they're taught to seek alternative diagnoses and consider emotional or immune dysfunction syndromes; requiring symptomatic treatment. According to those experts entrusted with the task of educating the world on the disease, some facts include that Lyme disease is rare and very hard to catch (since only a small number of ticks are supposed to be able to transmit infections and should stay contained in certain limited areas) and they say it is easy to cure anyway, if you do get it and that it can't be transmitted to your baby and that it doesn't cause death. Meanwhile, quick review of medical history turns up multifarious contrary reports (many by these same experts) to these and other "facts about Lyme disease". Still, these same debatable "Lyme disease facts" are the basis for Lyme disease treatment guidelines.

Why the earlier Lyme disease studies and the words of the US Senate are disregarded today, by government agencies and the appointed experts, is an enigma. Perhaps Connecticut's Attorney General will find out during his investigation, since it is never addressed by the individuals involved; many of the experts themselves from Infectious Diseases Society of America (IDSA). The investigation is into the creation and publication of IDSA's Lyme disease treatment guidelines, which include treatment suggestions and information used by medical professionals, researchers, insurers, employers and the public. It is a complicated and delicate investigation which has been underway for several months with no end in sight. Another similar investigation was performed a few years ago by the GAO (Government Accountability Office) and found no significant conflicts of interest amongst those investigated, including some members of IDSA, and some members of the American Lyme Disease Foundation (ALDF). Some of the experts under investigation express the feeling that the investigation is unfair and a result of intense pressure from Lyme disease activists.

What is striking is this; how bad does it have to be to motivate exhausted, disabled people with a debatable chronic illness, to protest as activists?

Advocating activism
Advocates, like McGuire, support the new investigation in hopes that it will clear up the controversy once and for all so that patients can get the medical attention they need. Too often patients who fail to realize a cure with initial treatment are fired by their doctors who refuse to be associated with them any longer. The doctors fear that they will suffer a fate similar to those patients' doctors whose relationship to their patients suffering from chronic Lyme disease is investigated by the states' licensing boards. The patient then joins scores of others left suffering without medical attention, without research into how to help them, and without any services whatsoever. They lose their homes, their jobs, their friends, their social lives, their hope and so much more. So they form support groups to try and help each other and to try change for the better the incredibly inhumane circumstances they are forced to endure; and therefore they are activists.

Doctors McNeil and Drulle, advocated for victims right up until the day they died; as have many others who feel that human rights are constantly violated by this group of researchers, doctors, and other scientific and medical professionals normally awarded the majority of grants to study the disease. Of course grants are great, but instead of researching a cure, vaccines are researched and patented for a disease that is supposed to be easy to cure. Many profit directly from vaccine and other patents; testimonials against patients and their treating doctors; lucrative activities involving insurance companies and pharmaceutical companies; and other interesting activities. On the subject of finding herself suddenly immersed "up to my eyeballs in controversy," after being diagnosed with Lyme disease, one woman commented, "It's bad enough living without medical help, trying to get through every day, feeling like I'm going to die any minute, without having to fight greed and corruption in a political battle to boot. We have no one healthy to fight for us, so that just leaves a bunch of really sick ineffective advocates to investigate and expose junk science, advocate for one another, and mostly try and warn others because if you get the chronic Lyme, you're just ridiculed, insulted and tossed aside by the medical establishment, like a piece of radioactive garbage."

Giving hope to McGuire, families of Lyme disease sufferers, volunteer advocates and activists alike; other professionals like those at International Lyme and Associated Diseases Society (ILADS) suspect continued illness after treatment may indicate persistent infection with the Lyme bacteria, which is a spirochete similar to the one that causes Syphilis, or possibly a co-infection that can be transmitted with Lyme disease. Some say they treat patients until they are well, how ever long that may be and some try a more holistic approach. Most importantly, they normally don't fire patients who are not well after initial treatment.

Interestingly, most IDSA professionals see few chronic patients while, most ILADS professionals are involved with chronic patients daily. IDSA treatment guidelines focus on early treatment and prevention, recommending that treatment beyond twenty-eight days is completely ineffective and highly dangerous. Outside of symptomatic maintenance, IDSA Lyme disease treatment guidelines simply offer an apology for patients whose infection is persistent, complicated or not caught early and cured. ILADS have, out of necessity and driven by clinical experience, review of historical and current science, and a deep desire to help patients, created an alternative set of treatment guidelines that brazenly address chronic Lyme disease and offer guidance for doctors who choose not to abandon or blame their sick patients after an initial round of treatment fails.

Why not wait and see
McGuire's not asking where it came from or why Lyme disease is such a hot debate, she just wants people to remove ticks properly and immediately, consult competent medical professionals, and do not skip or discontinue treatment early, even if symptoms begin to resolve. McGuire wants the world to know that a tiny bacteria is the cause of a reduced quality of life or even death for too many humans, many of whom have no idea that they're infected. Her advice? "Never 'wait-and-see'. These infections, if left untreated can cause a painful, chronic illness that has no well-known treatment or cure."

A growing number of medical professionals concerned about humans and animals agree that complicating many cases of Lyme disease - and especially the highly debatable chronic Lyme disease - are some more or less well-known afflictions like Rocky Mountain Spotted Fever and Cat Scratch Fever (medically known as Bartonella), and Tularemia (also known as Rabbit Fever), Babesiosis (an infection related to Malaria), Ehrlichiosis, Mycoplasmas, Tick-borne Encephalitis, and too many others to name them all.

Learn more about Lyme on the web:
ILADS: http://www.ilads.org
LYMEinfo: http://www.lymeinfo.net
WILDER Network: http://www.wildernetwork.org

Also on the Web; Follow Grace and Muriel Across Country:
http://www.wildernetwork.org/Grace_and_Muriel_Go_West.html

Get to know Grace and "Muriel":
Grace and "Muriel", by Di Freeze


Grace and her pups

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