Many people who’ve had Lyme disease do get better - especially if they’ve been given proper treatment in its early stage. However, all too often a lack of, or an improper diagnosis of this illness(which is quite common with Lyme disease)can result in its becoming chronic. Sadly, that’s the situation for chronically ill Lymies, whom, like "fish on a hook," are caught!
We have had to learn to adapt to this miserable disease and all of its idiosyncrasies, including the physical and psychological pain which we must endure daily, from an illness which has ravaged our bodies. A Lyme patient friend of mine once remarked: "I’m so sick and tired of waiting for the other shoe to drop with this damn disease!" It’s true. Many of us just get over one battle with LD, only to begin another.
Between suffering with its numerous symptoms and taking the extensive time needed to treat it, coping with Lyme disease has for far too many of us become a way of life. I’m presently in what we Lyme patients refer to as a "window." This is a time in which my symptoms have abated enough so that I can accomplish daily tasks which I’m usually too ill to deal with. Chronic Lyme patients live for this "window" because it is the only time in which we can have some sense of normalcy in our lives.
My antibiotic, and other treatments for coinfections that I have contracted from tick bites, have helped to make this "window" possible; however, once they have ended, there’s no guarantee that my symptoms won’t worsen again. After all, it has happened to me(as well as many other Lyme patients) before. The frustration is enough to test anyone‘s patience!
Some of us are fortunate enough to avoid permanent physical damage. However, others are not so lucky, and can suffer from problems which can last for a lifetime (the memory of a crippled child confined to a wheel chair, continues to serve as a painful reminder of just how horrible Lyme disease can be).
While some patients do get better, there is at present no formally recognized cure for chronic Lyme disease. Many of us are either on some type of therapy or off it, waiting to see if our own immune systems can combat this illness on their own. As unlikely as this may sound though, in certain respects we’re fortunate; there are many people who have Lyme disease, but because of the poor diagnostic tests presently available, are unaware of it.
Many of them have traveled from one doctor to the next only to be misdiagnosed; all because of a disease that can mimic so many other illnesses that it can be mistaken for them. It’s so insidious, that it can completely debilitate one, yet not show up in routine serologies
for Lyme. These people are suffering miserably as a result of this, and many of them are even receiving treatments for illnesses which they don’t have, while their Lyme infections and coinfections continue to go untreated.
As if this illness weren't enough of a problem, many Lyme patients have been told by their insurance companies, that the long-term IV therapy that their Lyme literate physicians have prescribed for them, is considered to be experimental and consequently, not covered by their policies. This problem only aggravates an already stressful situation as the costs for their treatments can mount to staggering levels, which they themselves must pay for. In extreme cases Lyme patients must forego medical treatment altogether, which only compounds the problem.
The backlash from this lack of medical coverage adds up emotionally too, as the families of Lyme patients (many of whom end up becoming caregivers to other ill family members) also find themselves being drawn into Lyme's circle of destruction. Many of these families have stated that the emotional price that they've had to pay for contracting Lyme disease has been far too great.
Lyme disease has certainly made victims of many of them. And sadly, in worst cases this illness has destroyed numerous lives. Ironically, if Lyme patients were victims of terrible diseases such as AIDS or cancer, rather then Lyme disease, they'd be able to obtain the medical treatment deemed necessary by their physicians.
Unfortunately, in the interest of saving money, most insurance companies are continuing to assume both the roles of God and physician when it comes to treating Lyme disease - neither of which they are entitled to. I used to believe that once the Insurance industry began to better understand the complexity of
Lyme disease, that they would eventually become
more accomodating to those of us whom are afflicted with it; however, this has not been the case.
Moreover, it is an extremely naive assumption on the part of those Lyme patients suing to receive proper medical treatment, that they can actually obtain a fair trial when taking on an industry known for its "soft money" political contributions. Such
contributions empower this juggernaut with enough lobbying clout, to make it invulnerable to nearly all of those seeking judgments against it.
Below you will find some very useful links pertaining
to Lyme disease and other Lyme related topics. Please take a moment to file them in your favorite places folder, as they may come in handy at a later date.
Thanks for listening!
Jim Marino
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Lyme Disease Information Links
The International Lyme and Associated Diseases Society (ILADS)
Dr. Burrascano's New Lyme Disease Update
Advanced Topics In Lyme Disease
Lyme Disease Support Groups -- Worldwide
Iowa Lyme Disease Association
Subscribe to the Lyme Matters Newsletter
Back Issues Of Lyme Matters Newsletters
Lyme Disease Conspiracy Theory
The Lyme Alliance
The Lyme Disease Bookstore
Lyme Disease Cases in The United States and Canada
The Lyme Disease Network
Other Lyme Related Newsletters
The Lyme Disease Quilt Page
The Tick-Borne Illness Memorial Page
Lyme Vaccine Information
Art Doherty's Lyme Disease Links Page
More Lyme Related Links
Lyme Disease Wednesday 3 pm Chat on AOL
The Lyme Disease Chatroom Pamphlet
The Deer Tick Homepage
Life With A Twist Of Lyme
Woman Battles Two Foes: Disease and Her Insurer
Dawnie's Lyme Disease Page
Other Informative Links
The Brucellosis Triangle
Alternative Medicine Magazine
Botanical.com - Using Herbs in Place of Synthetic Medications
Foundation for the Advancement of Innovative Medicine
Medscape -- The Online Resource for Better Patient Care
The Mayo Clinic Online
The Americans With Disabilities Information Act
(Medi-Smart) Medication Assistance Programs
Medbroadcast.com - Learn more about your medications
Special Education - Public Law #504
The National Library of Medicine
Electromagnetic Therapy -- A Different Approach In The Treatment of Illnesses
Online Medical Dictionary
The Life Extension Foundation
St. Joan of Arc Chapel Picture Gallery
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