Tuesday, July 3, 2012

"Fear Leads to Anger. Anger Leads to Hate. Hate Leads to Suffering."

Yoda – Star Wars Episode1: The Phantom Menace (1999)

Here I go again – another Star Wars quote (See Listen to Your Gut ) but how could I resist? I’m in the process of dissolving my fear of bug bites leading to chronic disease. Do I still have THE FEAR? Well, what do you think? I’m working on it! These rewired thoughts don’t change overnight. But, I truly feel that I had a chronic disease. It’s in the past. (Notice I said HAD!) And I also realized that I was angry! I was angry at myself for getting sick! And I suffered because of this thought.

When I was first diagnosed with Lyme disease, I thought that all I needed was a course of antibiotics and I would be back to normal. But, what I didn’t know at that time was that I was already in late stage Lyme. I knew something was wrong. I knew my symptoms were chronic. I knew being spacey, tired, woozy and achy every day wasn’t normal. But I also knew that the GP who prescribed the amoxicillin for me, knew very little about Lyme and I needed to find a LLMD. He couldn’t help me. I was on my own. And I was scared. I had to find an investigative doctor who understood how to treat chronic Lyme. For the first time in my life, I had to find a doctor that was out of network. I had no choice. I knew a ten minute doctor’s visit wasn’t going to solve my problem. And I certainly wasn’t going to wind up like this:

Thought I’d put in a little comic relief :). But, as you can see... there is a dark side...

The ugly truth is that there is a lot of misinformation and ambiguity surrounding Lyme disease and its treatment. It is a known fact that many LLMDs in the country (mostly members of ILADS (International Lyme and Associated Diseases Society) have disputed the CDC's and IDSA'S (Infectious Disease Society of America) recommended 2-4 week course of antibiotics for the treatment of Lyme. The CDC doesn’t recognize chronic Lyme disease. According to the CDC, patients with lingering symptoms, after taking the recommended course of antibiotics, have a condition called “Post-treatment Lyme disease Syndrome” in which “the exact cause of PTLDS is not yet known...”

There has been a huge debate over the treatment of Lyme. Many doctors have been actually targeted by state medical boards and have lost their licenses, for prescribing long term and intravenous antibiotics for their patients.

Award winning documentary, Under Our Skin, is a heart-rending and illuminating look at this controversial hidden epidemic. “Through dramatic stories of those who have been affected by the disease, the film shows how controversies concerning diagnosis and treatment are leaving patients abandoned by the mainstream medical establishment. As Lyme sufferers visit specialist after specialist, so many are told that their problems are “all in their heads.” Many are misdiagnosed with incurable and often deadly syndromes. Some lose their jobs, their health insurance, their life savings, and even their lives…”

So why is Lyme so mystifying? And how can it be so easily misdiagnosed by so many doctors? The answer lies in one word – testing. As the film points out, “standard testing is unreliable.” A negative test result could still mean you have the disease. Lyme is very complicated to diagnose (See Damn! We’re in a Tight Spot) The Bb spirochete likes to change forms. It likes to hide in your organs and soft tissue. And many times, it’s not alone. Co-infections such as, Babesia, Anaplasma and Bartonella, often are transmitted by the same tick that transmits the Lyme bacteria. And this is just the tip of the iceberg.

Only a competent investigative LLMD will know what other pathogens to test for and the appropriate labs to use. But there is a catch. Competent LLMD’s are few and far between. Many patients have to travel to another state for treatment. Most do not take insurance. Most of the labs that are the most reliable are private labs and are out of network. Supplements, herbs and possibly homeopathic support, may be an additional out of pocket expense.

A typical office visit including supplements may run a patient a couple hundred dollars. Lyme and co-infection testing could cost anywhere from $400.00 to well over $1,000.00. And then, last but not least, are the health insurance companies, who many times refuse to cover the long term Lyme treatment.

Patients are literally caught between a rock and a hard place. It’s no wonder why there is a tremendous amount of fear among Lyme patients. It’s no wonder why there is so much anger toward the “mainstream medical establishment” that defines Chronic Lyme as "Post-treatment Lyme disease Syndrome" – cause unknown. It’s no wonder that there are a lot of sick people out there who are misdiagnosed, mistreated and misguided by a broken, complacent system.

I was one of the angry patients. I hated myself for getting a complicated disease that caused financial burden and emotional stress for my husband and children. What frustrated me the most were the lengthy and costly treatments and testing that seemed to never end. It wasn’t until I brought my younger son in to see Doc Brown that I realized that this wasn’t working for me anymore. I had an epiphany. And it hit me while I observed Doc at a monthly doctor’s visit. I realized that my son and I would never be healed if we stayed with this doctor. I realized that I would always be chronically sick if I stayed within this system.

I had to leave…for my son’s sake.

I had to leave…to be healed.

To be cont…


nonna said...

do what now??///

healerdealer said...

Are you asking yourself this question? Or are you asking for advice?

I'm just telling it like it is - through my own personal experiences.

The holistic approach was the path I chose. It resonated with me.

There are many ways to heal. You have to find the path that resonates with you.