Since then, LD has taken a tremendous emotional as well as financial toll -- not only on myself, but on my family as well. Looking back, I still find it hard to believe that an illness as insidious as LD, can still remain so poorly understood by the medical community.
My summary of life with Lyme disease can be found below.
LIFE WITH CHRONIC LYME DISEASE: A SUMMARY
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 most 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 them for a lifetime; my memory of a crippled child confined to a wheel chair, continues to serve as a reminder of just how horrible this 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 doctor to doctor 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 they've had to pay for contracting Lyme disease, has been far too great.
Lyme disease has certainly made victims of many of them. Sadly, in the worst cases, it has destroyed a number of their lives. Ironically enough, if Lyme patients were victims of terrible diseases like Cancer and AIDS, 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, many 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. One can only assume that until these companies begin seeing Lyme disease for the serious and complex illness which it is, that most chronically ill Lyme patients will end up fighting for their medical treatment in a court of law, as these companies continue to turn a "deaf ear" on their cries for help.
Thanks for listening,
Jim Marino
Brookville, New York
The Lyme Disease Quilt Page
Please click on the mailbox to send me your comments
Lyme Quilt main page
Lyme Disease related links
Copyright ©1998-2001 The Lyme Disease Quilt Page
