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  • Lyme Lens

What's in a number...

Numbers can be pretty important in our lives, especially when we are on vacation in Las Vegas! On a more practical note, we use numbers for everything from telling time to knowing what day it is on a calendar to taking the correct highway when driving our cars. Letters and numbers are some of the first things that we learn as a child and their significance cannot be stressed enough when talking about our ability to function in society. We often take numbers for granted until a certain number becomes significant enough to affect the future of our health. A mind boggling number was shared with the public this past week and the Lyme community is rejoicing.

Last Monday, the CDC (Center for Disease Control) decided to ammend their previous estimates of how many people they say are infected with Lyme Disease each year in this country. Those of us battling this disease have been saying for years that Lyme is grossly under reported and our numbers are much greater than they are admitting. Their initial estimates were only between 10,000 to 30,000. They have finally raised those numbers to what we have been saying all along. The CDC now suspects that the true number of people infected with Lyme Disease every year in this country is 10 times greater than that and is actually 300,000 people. Although we are saddened that this many people are suffering, we are elated that they are finally bringing to light what an epidemic we have happening in this country.

The Chronic Lyme Disease community has been fighting a hidden war. Not only are we fighting to save our lives from this heinous bacteria, we are also fighting to make the public aware of how many of us are suffering. We have been out here waging a grass roots effort to get our voices heard through local news stories, peaceful protests, rallies, lobbying politicians, marches, Worldwide demonstrations, radio broadcasts, movie showings of the documentary film Under Our Skin, support groups, newsletters and educational forums for the medical community. Those of us well enough to leave our homes are pounding the pavement holding signs, handing out pamphlets and wearing lime green at every function we can possibly attend. While others who remain bedridden light up the internet from our laptops, writing on blogs, forums and creating personal websites trying to get the word out despite our desperately ill state.

We have spoken to anyone who will listen in an attempt to educate people about our disease. We have great hopes that by reaching out to people at all levels we can promote prevention against tick borne diseases. Our goal is also to assist people who are currently suffering and maybe we can pave the way for the future so that those who come after us will have an easier road than the one we have traveled. If our efforts can open up a dialogue between the CDC and the ILADS group (the Lyme doctors who currently take care of us) then our efforts will have been worth something. I read a wonderful quote from a woman named Podimala the other day. She stated, “Our civilization is strong enough to accept mistakes and strive to be a better people.” It is time for the battle between the CDC and the group at ILADS to put the past behind them and begin working together. People are dying from this disease.

Our lives with Chronic Lyme Disease have been very difficult because we have been living with an “invisible illness.” There is a hidden Lyme War going on that the public is not aware of. When people look at us, they don’t see that we are ill. We often look completely normal to the lay person on the street when we are actually in horrible pain, ready to pass out at any moment and struggling to get through our day. The average person has no idea that our insurance company has refused to pay for our care and we have paid tens of thousands of dollars per year for our treatment. Behind the scenes we are barely holding on to our jobs, our homes, our marriages and our sanity. We are some of the toughest people you will ever meet and we are often doing it all alone.

What’s worse is that we are not supported by the medical community. We have been insulted by physicians, laughed in our faces by the doctors whom we are supposed to trust when we go to them begging for help and told “it is all in our heads” when clearly there is something that is killing us slowly and painfully. All because a tick latched on to our skin one day and decided to spew its saliva into our bloodstream. We are not crazy, we are SICK. This is a disease that needs more research, more money spent towards development of medications to fight it, more education for the physicians who really do not know how to treat it and by all means, more support for the people who are suffering from it. The time has come for this “invisible illness” to be brought into the light.

Now that the CDC has taken its first step of admitting that there are not 30,000 people infected per year like they suspected but more like 300,000 per year, then the possibility certainly exists that Chronic Lyme Disease is far worse than they ever imagined. I know that making this admission is only their first step but it is one that I am so enormously grateful to see. I never thought that it would happen in my lifetime. For three years, I have struggled in silence from my sickbed. I have written my blog, followed all of the Worldwide protests and happenings on the internet but I never thought the day would come when the CDC might reverse its staunch viewpoint. I can only hope that this is the beginning of an awakening for our country and the world.

Chronic Lyme Disease is taking the lives of too many wonderful people in this world. What’s in a number? People. People are in those numbers… mothers, fathers, brothers, sisters, sons, daughters, husbands, wives. People that you love are in those numbers and they are all dying from Lyme Disease.

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