Wednesday, May 12, 2010

New Blog, Lyme-Over the Edge, Launches

How much do you know about Lyme Disease? Do you know:

1. It's the #1 vector-borne illness in America.

2. All too often standard tests backed by the CDC (Centers for Disease Control) result in a false negative, forcing the patient to go years without a diagnosis while he/she gets sicker and sicker.

3. Many times patients with chronic Lyme are told it's "all in their heads."

4. The standard care for Lyme patients is 2-4 weeks of antibiotics. After that time, the CDC declares, all the bacteria that cause Lyme are eradicated from the body. So what happens when these patients are still sick with Lyme--and the medical community at large won't accept the fact they need further treatment?

5. To this day doctors who know little of Lyme are apt to tell a patient with clear Lyme symptoms, "No need to test for Lyme. We don't have it in this state." Wrong.

It's bad enough to have a disease that steals your quality of life as thoroughly as Lyme does. Pain throughout the body, weakness, instability, inability to concentrate, extreme fatigue--these are just a few of the myriad possible symptoms. Lyme has often been called the "Great Imitator," as patients with Lyme are instead diagnosed with Chronic Fatigue Syndrome, Fibromyalgia, Multiple Sclerosis, or a host of other illnesses. Problem is, the wrong diagnosis not only means lack of correct treatment, it can mean wrong treatment that exacerbates Lyme. CFS patients, for example, are often put on steroids for their joint swelling and pain. Guess what--Lyme spirochetes (Borrelia burgdorferi) love steroids. The patient becomes much worse.

As you've probably heard, I'm writing my 22nd book, a novel centered around Lyme Disease and the so-called "Lyme Wars" that surround its treatment. Over the Edge is due in the beginning of June. (Very soon now!). It will release in May 2011--May being Lyme Awareness Month. Yesterday I launched my new blog, Lyme-Over the Edge, a place where Lyme patients can tell their stories about fighting the disease. These stories will amaze you and educate you. Who knows--you may well know someone who has Lyme and who doesn't realize it. Your understanding of this disease may help someone you love one day.

Yesterday's post on Lyme-Over the Edge: launch of the blog and an intro to Lyme Disease

Today's post: Suze Overstreet's story: "A Decade of Symptoms." Here's an excerpt:

From March until June I missed many days of work due to illness. I started feeling severe sharp pains in my knees and it was very difficult to bend them or walk up inclines. My legs would burn to the point where I needed to sit down. I took 5 trips to the ER between June 1 and July 2rd. Each time, the doctor would say there was nothing wrong me. On my fifth trip to the ER I was given an MRI, CSCAN, and multiple x-rays, which came back completely clear. But I was still feeling terrible...

Read the rest of Suze's story. (A custom template for the blog is now being created.)

4 comments:

Kathy Burnett said...

It's about time someone did this! My son had lyme disease and we believe our daughter had it as well, but the doctors dismissed our concerns. Thank you so much. I know many, many people have suffered needlessly because of lack of information in the medical field.

Kristina said...

My friend is a doctor is NJ. She said that it is so common there that she could dx it over the phone now. She said all it takes, for most people, antibiotics but if you aren't dx'd at the first sign of it then that is when people have chronic problems after treatment. She said it is very sad when people go without a dx when it is actually quite easy to figure out if a person has it or not. There was a little boy that came in to her office covered in the circles that come with it and she said that it was the worst case she had ever seen in a person.

I guess it takes doctors paying attention and knowing the signs and symptoms of the disease.

Crystal Mazzuca said...

I saw a naturopathic Dr. last year who said everyone has some level of Lyme and that we really need to figure out better ways to treat it. I'm excited to see the info you're able to include in your book!

Brenda Nixon said...

Thanks for sharing - I'll tweet about it, too. A tick bite also carries Rocky Mountain Spotted Fever (RMSF), which I contracted four summers ago probably from my FL trip to the AWSA Conference. It was a miserable disease, which can kill if not diagnosed and treated promptly. My RMSF responded to Doxycycline - the same antibiotic used to treat Lyme.