Dreaming of Green

I am dreaming of the day when undiagnosed Lyme patients can simply go to the doctor and get properly diagnosed and treated. Awareness for Lyme disease is so poor, that a huge majority of people with Lyme disease--myself included--get diagnosed only after talking with someone else with Lyme disease.

Every doctor and specialist I saw said, "There's nothing wrong with you."  "Well, then why can I barely walk? Why this bone-crushing pain? Why??!" I wondered and sometimes asked the doctors. I had given up on doctors when, as fate would have it, I bumped into an old friend who happens to have Lyme disease.

The inevitable question came up that you come to dread when you don't feel well: How have you been? Prompted by my friend, my story came tearfully rushing out. But instead of having one more person flatly deny, "There's nothing wrong with you," I was answered with kindness, "Your symptoms are the same as mine were. We have to get you tested for Lyme!"

My test came back highly positive for Lyme disease and multiple other tick-borne diseases. My friend on the street could recognize Lyme disease in me, yet doctor after doctor, specialist after specialist couldn't recognize it!

I am dreaming of the day when psychiatrists know to ask their patients, "Have you had a tick bite recently or traveled to an endemic area?" Panic attacks, anxiety, depression and agoraphobia can all be symptoms of tick-borne diseases like Lyme disease. I went to a psychiatrist in 2001--shortly after a tick bite--to seek help for a sudden case of agoraphobia, severe separation anxiety from my husband, severe depression and panic attacks.

Had the psychiatrist known to ask me if I had had a recent tick bite, maybe it would have been early enough that I could have been cured of my Lyme disease. And even if it was too late to be cured, I still could have learned how to protect my not-yet-born children from being exposed to multiple tick-borne illnesses in utero.

I am dreaming of the day when midwives and obstetricians routinely ask their patients if they've recently had a tick bite or traveled to an endemic area. This simple question could save countless babies from this rapidly growing and silent epidemic. Congenital Lyme disease is not something you ever, ever want to experience, but it's happening more and more.

It's frustrating waiting for increased awareness of Lyme disease. Lyme green would definitely look pretty next to the pink breast cancer awareness products sweeping the nation, but I'm getting tired of waiting for the sea of Lyme green to hit the shelves. (Bring it on!)

While we wait for the world to finally take notice of the Lyme epidemic, the number of endemic states is rapidly escalating. While we wait, more and more mothers unknowingly pass Lyme disease on to their unborn children. While we wait, you or someone you love may become infected with Lyme disease.

If caught early enough, Lyme disease is usually curable. How sure are you that your doctor knows the facts? Are you willing to bet your health to find out? According to one study, the average person with Lyme goes 22 months and 7 doctors before getting properly diagnosed. Add in the fact that Lyme disease is more prevalent than AIDS and you may begin to see why those of us with Lyme disease are getting very antsy waiting for our "silent epidemic" to finally receive its voice.

Let the sea of Lyme green begin!

Lyme Disease Awareness Month

Many people have asked me how they can help raise awareness for Lyme disease. Well, May just so happens to be Lyme Disease Awareness Month! If you're looking for a simple, yet profound way to help, click on any of the Lyme blogs I have linked on the right and leave an encouraging comment to my Lyme sisters and brothers, as you will quickly see that most are struggling to keep their head above water.

Chronic Lyme disease is a very painful disease; so painful, in fact, that the number one cause of death from Lyme disease is suicide! Lyme is a tough battle, and your kind words can help someone more than you could ever imagine!

There are many other ways you can help: you can spread the word by sharing my blog, you could make a donation to my fundraising page for Lyme research or to Columbia University's Lyme and Tick- Borne Diseases Research Center, or you could even join in the fun by turning your Facebook or Myspace profile lime green for the month of May.

Thanks for all of your love and support!

What I Wish I Would Have Known About Lyme Disease

The most frustrating part for me of having Lyme disease is the lack of awareness surrounding the disease. Apart from what they've learned from me, my friends and family don't know anything about my disease. In fact, the only people I know of that know anything about Lyme disease are either those who have it, or those who have a loved one with it. It is spreading like wildfire, while the task of educating people about Lyme disease has been left to those of us who have the disease.

Misdiagnosis is a huge problem with this disease. Doctors are not looking for it. It took countless doctors before I got the correct diagnosis. Because of that mistake, I might not ever be totally well again. The Lyme bacteria had time to disseminate throughout my entire body: it's in my brain, my organs, my joints, etc. What could have been easily treated in the beginning now causes me excruciating pain every day that may never go away.

The number of cases of Lyme disease are on the rise and it is believed to be spreading more rapidly than AIDS. What I wish I would have known about Lyme disease is that it is preventable! Our children learn in school about preventing AIDS, doing self-exams for cancer, and the importance of safe sex. Did you know that children have the highest risk of contracting Lyme disease? So why aren't our schools teaching them the simple ways to prevent Lyme disease, how to properly remove a tick, and the warning signs of Lyme disease?

Our children are not allowed to attend school until all of their vaccinations against childhood diseases are up to date. While there is currently no vaccination against Lyme disease, prevention is key. If our children were taught in school how to prevent tick bites in the first place, and properly educated on what to do if they do discover an attached tick, we could stop this rapidly spreading, and PREVENTABLE, disease in its tracks. The less we are educated about it, the faster it is going to continue spreading.

Sadly, lack of education about Lyme disease means very little money is going into research for this disease. Without that, there is no hope for a cure for people like me and countless others who have very complicated cases due to misdiagnosis (which is very common). Please check out this website for Columbia University Medical Center's Lyme and Tick-Born Diseases Research Center and consider making a donation for Lyme disease research.

The most important thing you can do is to educate yourself and your children. Remember, Lyme disease is found in every single state in the United States and many other countries throughout the world. It is usually easily treatable in its early stages. However, when it is left untreated for too long, usually because doctors aren't recognizing the signs, it turns into a painful and crippling disease that is very difficult, sometimes impossible, to eradicate.

I hope you'll take the time to click on the links I've included throughout this post. If I could prevent just one person from going through what I went through, it would be worth all of this pain! Knowing about Lyme disease could have saved me from going through the agony of this disease. I hope you will repost this and help me spread awareness for Lyme disease.