Sign in with Google+ Sign in with LinkedIn
Lyme Diagnosis

Has Lyme changed your mind?

Every New Year's Eve I write down my goals for the New Year. Written lists have an uncanny way of materializing -- perhaps not as soon as we would like, or in the way we imagined, but all in all the act of writing down your goals for the coming year does seem to influence your ability to achieve them.

I also write down my goals for each month, putting them in a journal dedicated for that purpose only. I got my journal out today and looked it over, scanning to see the trajectory of the last five years since I've been dealing with Lyme.

My goals were strikingly immediate in the beginning, and health naturally became my number one priority. In the past they'd had everything to do with professional, financial, and relationship aims. But starting in 2005 my written goals became narrow and specifically focused on getting healthy. Common actions and abilities I once took completely for granted -- thinking clearly, talking without stammering, walking around the block, putting in a good day's work, sleeping peacefully, or waking up rested -- it all seemed very hard to imagine.

From the perspective of today, I look back at that time with more than a little fear. 'What if' questions start gathering in my head like storm clouds. What if I ever get that sick again? No matter how far behind you the illness gets, once a powerful antagonist like Lyme has twisted you like a rag and hung you out to dry, one is never the same. Revisiting my deepest wishes I'm amazed at how much faith I had managed to express. I kept my focus on positive affirmations. One month is a simple list of 10 goals, each a variation on the same theme of trust in my body's innate wisdom, in its ability to heal.

Please do not misunderstand. I'm not saying that I believe I healed from Lyme because I wrote down my goals. The point is, writing them down strengthened my resolve to work hard at healing. Going through the long dark passage of disease and emerging on the other side is one heck of a life changing experience.

The brain and all the systems of the body can be affected by the Lyme bacterial complex. But even when the brain has been affected there is hope. Further, there is the miracle of transcending brain changes and tackling new studies, such as learning a new language, an instrument or sport.

For proof and a shot of inspiration, read this New York Times article by Oliver Sacks:

This year, change your mind.
Comments

Lyme epidemic causing healthcare crisis



CHARLOTTE, N.C., Feb 24, 2009 (BUSINESS WIRE) -- An ongoing battle over the diagnosis and treatment of Lyme disease, a tick-borne illness, is pitting doctors against doctors, prompting health insurance companies to deny medical claims at an alarming rate, and leaving suffering patients stuck in the middle.

Read the full press release here.
Comments

Send your doc to SF

When I was receiving Lyme disease treatment in California, where I lived at the time of my diagnosis, my family doctor was a naturopath who had studied with ILADS physician Dr. Raphael Stricker and others with CALDA. I was extremely fortunate to have his expertise as he helped me battle the fight of a lifetime. In turn, he said he felt lucky to have the expertise, experience, and excellence of these Lyme specialists behind him.

Your doctor doesn't have to live in California to attend. People from all over the country are planning to go. Help us spread the word about the CALDA Lyme conferences coming up in San Francisco. To sweeten the pot, here's a way for him or her to get reimbursed for a portion of the cost:

From the CALDA website:

CALDA will reimburse up to $800.00 out-of-pocket expenses for any actively practicing MD, DO, ND, NP or PA in any state to attend the annual conferences put on by the International Lyme and Associated Diseases Society (ILADS) and the Lyme Disease Association (LDA). CALDA grants are limited and are only available to those qualifying professionals who are attending the conferences for the first time. Preference will be given to persons currently engaged in treating tickborne infections and who plan to attend both conferences.


The 2008 ILADS and LDA conferences will be held on October 17 – 19 at the Cathedral Hill Hotel in San Francisco. Please check the ILADS and LDA websites for details and to register at: www.ilads.org; www.lymediseaseassociation.org.
Comments

Who inspires you?

I'm a huge Amy Tan fan. If you haven't read her novels, you're missing out on some super funny and insightful stories. Read this and whet your appetite. I remember when I found out shortly after my Lyme diagnosis that Amy Tan also suffered for years from misdiagnosis and severe neuroborreliosis. Reading her story, I hung on every word. Of course, I had to read s-l-o-w-l-y. At that point, it often took me hours to comprehend one page of information. I determined that if the brilliant Amy Tan could slip so low and still pull herself out, I could too. She knew how tough it was. You know how it is. I don't want to be in this club, but since I have no choice I'm going to look around and find someone to inspire me.

Musician Darryl Hall was diagnosed with Lyme the same week I was. I feel solidarity with him. Another fabulous novelist, Rebecca Wells, has Lyme. We've got some great role models. GW Bush has had Lyme, and the White House doctors say he's fully recovered. Alice Walker, another amazing writer whose work I've always loved, has had Lyme disease. Just knowing we're not alone, and in fact, we're in some pretty good company, makes me feel a smidge better. Tell me, who inspires you?
Comments

Hear it from Lyme experts

Remember your second grade teacher telling you to use your 'thinking cap'? When I was in an acute stage of Lyme, searching for reputable sources of practical information online, I realized quickly that I was going to need to turn on my thinking cap when listening to people who meant well, but who weren't qualified medical experts. Where Lyme disease symptoms, diagnoses, and treatment are concerned, more information -- and unfortunately, more misinformation -- is becoming available every moment. Although forums and communities serve a noble purpose, and help reassure you that you're not alone, forums can also be a source of misinformation.

What you need more than anything, especially when you're weak, is to know that you can get better. I remember being so deathly ill (and also so ignorant about this disease), that I burst into tears of relief when my sister told me, over the phone, that a woman she knew had beaten Lyme, and was traveling, working, and living a perfectly happy life again. My symptoms were so painful, and my daily life and routines were at that time centered on Basic Survival 101. My world had shrunk to the point that I really couldn't even imagine living a 'normal' life again. Well, over the past three years since my diagnosis and treatment, my life has totally changed, but it's all for the better. As you may very well know, going through treatment, suffering Herx after Herx is not fun. It has never been easy. It's a slow road. I genuinely wish I could tell you there is a magic bullet that could set your life right again, or snap my fingers and make your pain disappear. However, there's no single pill that can do that for someone with an advanced stage of Lyme. Not yet. As you can hear our from our interviews with top Lyme disease research scientists, however, they are fervently devoted to finding a cure very soon. So keep your fingers crossed. When it happens, we'll tell you all about it!

Our mission here is to record real people's Lyme success stories, and interview world-class Lyme aware physicians so that you can hear them tell it like it is, and get the scoop directly. No mediators, no advertisers. This is the sort of meaty, practical information I hungered for when I first learned I had Lyme. We're grateful to be able to document all of these stories. Every one of our stories is important, each of them adds a small piece of the puzzle of Lyme and adds to our ability to heal. Listening to Rick's story, Karol's, and the others is one surefire way to fill your heart and mind with hope. And listening to the ILADS doctors and other medical practitioners in our 'interviews with experts' series is one very good way to learn, from reputable sources, how to get better. Because it may not be easy, but believe me, when you put on your thinking cap, as Ginger Savely, RN, who has treated a thousand Lyme patients at her clinic in San Francisco says: "You can get better!"

Become a member and get immediate access to the Expert Interview Series and the Success Stories.
Comments

Diagnosing Lyme: Lies & half-truths

It irks me to see inaccurate info about Lyme on health-oriented blogs. For example, I just read the sentence: "Lyme is completely treatable. No need to panic," and now I'm really bugged. No, I don't want everybody to panic. However, it's just such unfounded casualness about Lyme that creates the illusion that one needn't seek a Lyme aware doctor's advice right away, at the first suspicion of Lyme symptoms or the presence of a tick bite. There is absolutely no evidence that the person making the claim has any awareness of just how dangerous, and multi-stage, Lyme can be when left untreated.

The same blogger also cavalierly states that "a characteristic bull's eye rash will show up within 3 to 30 days." GRrrrrr! Not true. Up to 50% of people with a Lyme infection will never show signs of the circular, red skin rash. Diagnosing Lyme is a tricky thing, part art, part science. Even ILADS doctors differ in their approach to diagnosing Lyme. I skim the blogs like a watch-dog, looking for useful information. I'm vigilant. I can sniff out a lie about Lyme faster than you can say "neuroborelliosis."

How is the blog-skimming public supposed to become informed, with half-truths and lies circulating so freely? The mis-truths and misinformation all stems back to the opinion of the CDC -- in the form of the IDSA -- that Lyme is not a serious disease. I am really looking forward to following up on the results of the antitrust investigation into the IDSA's guidelines for the treatment of Lyme. Stay tuned. I'll be posting whatever I sniff out right here.
Comments

Beating Lyme

Before Karol, a diagnostic technician, received a correct diagnosis for Lyme disease, she saw 14 doctors over a four year period. One after the other, these well-educated (though ignorant about Lyme) physicians tested her for many conditions. Karol lives in Texas, and according to the region's doctors, "you can't get Lyme in Texas." So, they searched for the cause of Karol's pain and sickness. Early on, she did get tested for Lyme, but since the test was negative it was ruled out and forgotten. She could have a brain tumor, they suggested. She might have multiple sclerosis. Whatever the reason for her seizures and dizziness, the doctors never suspected Lyme.

One day, she happened to catch a nurse practitioner on the television news, talking about the difficulty of diagnosing Lyme disease. Listening to Ginger Savely, FNP, Karol made the decision to go and see her. "I wasn't very optimistic," says Karol, about receiving a diagnosis. After all, it had been four years. When she did get positively diagnosed for Lyme and began antibiotic therapy, she was thrilled. "That's weird, I know, to be so happy about having a disease," she says. However, the affirmation gave her the strength to fight it. Like so many of us, she found the experience of not-knowing, for so many years, to be almost as debilitating as the disease itself.

Karol now describes herself as 95% better. Listening to her story is both familiar and uplifting. She's a testament to patience and persistence through suffering and confusion. She talks about the ways that Lyme changed her life. Her attitude is upbeat, and she believes that positive thinking has a definite place in her personal healing journey.

LDRD members can login and listen to Karol's story.
Comments