IDSA Announces presenters for its July 30, 2009 Hearing of the Lyme Disease Review Panel
Posted June 22, 2009 on the IDSA website

On July 30, 2009 (8:00 AM – 5:00 PM EASTERN), IDSA will hold an all-day hearing of its Lyme Disease Review Panel to hear testimony from patients, physicians and scientists on its 2006 Lyme Disease Guidelines. Individuals presenting and the order in which they will present follows:


* Tina Garcia, Lyme Education Awareness Program Arizona (L.E.A.P. Arizona, Inc.), Mesa, Arizona
* Lorraine Johnson, California Lyme Disease Association (CALDA), Ukiah, California
* Daniel Cameron, MD, International Lyme and Assoiciated Diseases Society (ILADS), California
* Phillip Baker, PhD, American Lyme Disease Foundation (ALDF), Bethesda, MD
* Ben Luft, MD, The State University of New York, Stony Brook, NY
* Allison Delong, ILADS, Providence, RI
* Barbara Johnson, PhD, Centers for Disease Control and Prevention, Fort Collins, CO
* David Volkman, MD, Nissequogue, NY
* Sam Donta, MD, Falmouth, MA
* Eugene Shapiro, MD, IDSA & Yale University School of Medicine, New Haven CT
* Brian Fallon, MD, Columbia University Medical Center, New York, NY
* Sunil Sood, MD, Schneider Children's Hospital at North Shore, Manhasset, NY
* Ken Liegner, MD, ILADS, Armonk, NY
* Allen Steere, MD, Massachusetts General Hospital & Harvard Medical School, Boston, MA
* Steven Phillips, MD, ILADS, Wilton, CT
* Art Weinstein, MD, Washington Hospital Center, Washington, DC
* Raphael Stricker, MD, ILADS, San Francisco, CA
* Gary Wormser, MD, IDSA & New York Medical College, Valhalla, NY

In-person attendance at the hearing is by invitation only. However, the Hearing will be broadcast live, in real-time via webcast from the IDSA Website (www.idsociety.org/lymedisease.htm) and will be archived on the web for viewing at your convenience. Information on how to attend via webcast will be posted on the IDSA website no later than one week prior to the hearing.

Tags: IDSA, IDSA treatment guidelines

A friend asked for some advice about her Lyme protocol. She doesn't want to take antibiotics and would like to attempt an all-natural Lyme protocol.

I reminded her that I don't give advice. I'm an editor, not a doctor, and besides, it seems to me that depending on what stage of the disease you have, the symptoms of Lyme and the specific quirks of our immune systems truly complicate the challenge. The more people I interview about their experience with Lyme and its co-infections, the more I find out that I don't know. You've heard that old saying about the moment you recognize that you don't know anything is the beginning of wisdom? It's like that.

Although many of the Lyme-aware doctors we've interviewed for the "Interviews with Experts" series prescribe antibiotics for Lyme disease treatment, many people dealing with this multistage illness have incorporated other protocols into their routine at one point or another. Herbal tinctures, nutritional supplements and oxygen therapy are good examples of alternative or additional treatments, and I've had reports of excellent results with various combinations of these. Rife therapy has reportedly helped a lot of Lyme patients as well.

I've written about Dr Lee Cowden's herbal protocol in a special issue about Lyme protocols in the Townsend Letter, and he's featured in our Experts series. I'm interested in hearing more about the results of Dr Richard Horowitz's protocol, because he incorporates some of the Cowden herbs, and we're looking forward to adding his voice to our series.

I told my friend that the best advice I could offer is to tune in to the experts, and also listen to a catalog of stories about people from all walks of life, rich and poor, old and young, who have battled the tiger and now live vital, post-Lyme lives. I believe everyone has something to teach us, and that everyone is at least partially right. It's our job to decipher what's right, and what works, for us on our individual healing journeys.

I have had profound results from Dr Cowden's protocol. However, when I was first diagnosed my doctor insisted that I take antibiotics, which I remained on for six months.

I'm moved by my friend's sincere quest to heal from Lyme without going the pharmaceutical route. So, I thought I'd post this question to you: Have you had significant and long-lasting results from purely herbal protocols, such as the treatments recommended by Dr Lee Cowden, or Herbalist Stephen Buhner?

Governor signs bill, shielding doctors in treatment of Lyme disease


It's Monday, and I've got good news. Let's all acknowledge this nod of compassion in Lyme disease treatment and send thank you notes in support of this decision made by the governor of Connecticut.

The following is an excerpt of a June 21, 2009 article by Jack Sanders in the Ridgefield Press.com:

Governor M. Jodi Rell said Sunday she has signed a bill allowing doctors to prescribe long-term antibiotics in the treatment of persistent Lyme disease – outside of standard guidelines – without fear of sanctions from state health regulators if the patient’s clinical diagnosis of the tick-borne disease and treatment have been documented by a licensed physician.

“Doctors in Connecticut – the absolute epicenter of Lyme disease – can continue to do what is best for their patients suffering from this complex illness. I think most people know someone who has been infected,” Governor Rell said. “The bill also recognizes that Lyme disease patients must have the freedom to choose which remedy or regimen best meets their needs.”

House Bill 6200, which gained broad bipartisan support in the Legislature, was prompted by an ongoing debate in the medical community. Some health organizations have questioned the existence of chronic Lyme disease and the Infectious Diseases Society of America (IDSA) has cautioned against the long-term use of antibiotics. Some physicians were hesitant to treat patients outside the IDSA guidelines because of potential reprimands from medical boards and insurance companies.

“Doctors will have the right to use treatment guidelines based on their clinical experience and best medical judgment,” Governor Rell said. “This bill does not, however, shield any physician who provides substandard care.”

Tags: antibiotics

A ragged-looking deer roams through Charlie Bragg's backyard on densely forested Long Island. Charlie (superbly portrayed by Timothy Hutton) suffers from mysterious symptoms that prevent him from working, and torture him perhaps even as much as knowing his wife is dallying with her machismo boss.

It's the late 70s. Lyme disease is beginning to grab the attention of NE residents. Some of them observed a correlation between a tick-bite and a litany of disturbing symptoms ranging from rheumatoid arthritis to mental derangement. In Charlie's house, prescription bottles crowd the bedside table. He's taking penicillin, but we aren't clear how effective it is on his illness. Sometimes he seems almost normal, stringing up Christmas lights. Sometimes when he's alone, he writhes in pain.

He's not the same man I married, rants his desperate wife. His teenage daughter feels compassion, but she's powerless to help. Her own inner conflicts and the pulls and stabs of young adulthood are more than enough for her to handle. A hint of rot underlies the nice suburban constructs, which are coming to a head most visibly in the character of Charlie.

Some of Charlie's scenes made me shudder. As bad as Lyme disease is, and as frustrating as the controversies around it have become, at least we're not still living in the 1970s, when it was new. Some headway has been achieved since then.

Have you seen the movie? What do you think?

(Members, watch for my upcoming interview with Lymelife producer, writer and director, Steven Martini.)

Tags: lymelife

We were asked to post the following message about telling our Lyme stories to President Obama:

One of our San Diego support group members has made contact with a Barack Obama volunteer who is also partly responsible for getting the movie UNDER OUR SKIN shown in San Diego. This is an excerpt from their email:

"Hearing your story yesterday when we talked, helped me to be even more inspired to bring the message of Lyme Disease and Health Care Reform to as many people will listen. I encourage you to help bring to light the plight of Lyme patients. This is a once in a lifetime moment when we can share our health care stories. The Obama administration is listening and they want to help. Please visit
http://my.barackobama.com/page/content/healthcarestory to share your story and take the time to encourage all Lyme suffers in your association to do the same and then forward this message on to more Lyme sufferers. The more Lyme stories received the more likely they will get recognition at the federal level. Lyme disease so poignantly illustrates all that is wrong with health care in America."

Regardless of your political opinions, this is an opportunity to get extensive media coverage about LYME Disease, which can only be a benefit to those currently suffering, and hopefully prevent the future suffering of others.

Tags: under our skin

This is a really useful report, especially for those of us who are using herbal therapies to complement antibiotic treatment. It is Dr Richard Horowitz's findings on his use of herbs, such as Samento and Cumanda, among others, in treating patients who have Lyme disease and co-infections.

Herbs, Hormones & Heavy Metals: A study of CAM therapies in the treatment of Chronic Lyme Disease.

Download here


This tidbit is from the opening of his paper. Gave me a chuckle:

The History of Medicine
• 2000 BC Here, eat this root
• 1000 AD That root is heathen. Here, say this prayer
• 1850 AD That prayer is superstition. Here, drink this potion.
• 1940 AD That potion is snake oil. Here, swallow this pill.
• 1985 AD That pill is ineffective. Here, take this antibiotic.
• 2007 AD That antibiotic does not work anymore. Here, eat this root.


Dr Richard Horowitz
4232 Albany Post Road
Hyde Park, NY 12538
845-229-8977

A national coalition of health care workers, policy makers and others, the Partnership to Fight Chronic Disease (PFCD), is attempting to educate Americans about the significance of the crisis in our current overall state of health.

The PFCD mission:

* The PFCD believes that rising rates of chronic health problems pose a significant and unsustainable burden on the U.S. health care system, and that the viability and strength of the system presently and in the future relies on a willingness to enact policies that help Americans better prevent and manage chronic illnesses.



The PFCD and the Centers for Disease Control (CDC) do not categorize Lyme as a chronic disease. Therefore, it seems unlikely that this organization will help Lyme patients who continue to suffer with Lyme symptoms even though they've already been treated according to the CDC guidelines--a 30-day course of antibiotics.

However, if you suffer with chronic Lyme you may be interested in these six "unhealthy truths" about chronic disease in the United States, which I copied from the PFCD website:

* Truth #1: Chronic diseases are the No. 1 cause of death and disability in the U.S.

* Truth #2: Treating patients with chronic diseases accounts for 75 percent of the nation's health care spending.

* Truth #3: Two-thirds of the increase in health care spending is due to increased prevalence of treated chronic disease.

* Truth #4: The doubling of obesity between 1987 and today accounts for 20 to 30 percent of the rise in health care spending.

* Truth #5: The vast majority of cases of chronic disease could be better prevented or managed.

* Truth #6: Many Americans are unaware of the extent to which chronic diseases could be better prevented or managed.



If you consider yourself ill with chronic Lyme disease, one "healthy truth" to embrace is to get better educated about how to manage your illness. I realize that it's the toughest job you can take on, especially while you're sick. Believe me, I know because I've been there. Although the status of "chronic" or "Post-Lyme Syndrome" may not be easily or quickly determined by the policy makers, your health is what counts here.

Get educated about ways to manage your health, such as eating foods that will nurture (organic greens and proteins), not harm you (refined sugar).

LDRD members, login to listen to Lyme experts.

Tags: Chronic Lyme disease

When I was very sick with chronic Lyme, the scariest thing was not the agonizing pain in my skin and muscles, not that my shin skin had deteriorated into raw meat, and not even that I had trouble walking and could barely talk without stammering.

The scariest thing, the thing that blew my mind was that the infectious disease doctor I turned to for help REFUSED to treat me for Lyme. I had tested positive, yet she stood there shaking her head, insisting that I must have MS instead. She basically blew off the positive Western Blot and ELISA tests.

The doctor breezily observed my skin rash, which had become so severe that I had developed a staph infection that put me in ER, and told me, "You are too late."

Huh? I couldn't think very clearly because of the brain fog, but this response just sounded utterly wrong to me. I was speechless.

She then dashed off a prescription for corticosteroids, which she said was my last hope. I took them, and the Lyme bacteria multiplied rapidly. Needless to say, my condition went from bad to worse.

I was in terrible shape when I staggered up to the window in her clinic and requested my medical files. My legs could barely hold me, and my hands and voice were just as shaky and weak. I had begun seeing a naturopath who advised me to retrieve my records from the ID doctor's office and take them with me. He treated me for Lyme with antibiotics and a host of supplements to support my liver, kidneys, my whole body. He also informed me as gently as he could that Prednisone, the steroids I'd been prescribed, are contra-indicated when the Lyme bacteria is underlying. I must have seemed to him like the walking zombie that I felt like. Looking back, I wonder if he ever thought that I was too late as well.

As it turned out, I was not "too late." I was at the wrong doctor. An ignorant doctor -- one who needs to be educated about Lyme and doesn't even know it. I got better. Lyme symptoms are still a part of my life, and I still watch my health like a hawk. It has been a lot of work, but I'm stubborn and lucky and willing to work hard. I have no doubt that today I'd be very ill, confined to a wheelchair and on permanent disability, if I had listened to that ID doctor. Instead, every day is a miracle. I've achieved some of my wildest dreams, and I share my life with friends and family who are more precious than gold.

Now, of course, I also realize that my story is unfortunately not unusual among people with Lyme.

People who get better, even if it's only 90% better, often turn their heads and never look back. Who can blame them? But I don't want to forget. If it could happen to me, it could happen to anyone I love, my brilliant nieces and nephews, my mother, my life partner, my favorite teachers. More people need to be educated about Lyme, and controversies over what to call it -- whether it's chronic Lyme disease (CDL), or Post Lyme Disease Syndrome (PLDS), stand in the way of the badly-needed education about Lyme. Stephanie, whom I interviewed last week for the LDRD Success Stories series, mentioned she had just completed her degree as a registered nurse one month before she discovered she had Lyme. In her years in medical school, not one course instructor had even mentioned it.

I hope that as more doctors are educated, more will recognize that Lyme is a multi-stage disease, like syphilis (over which there is no controversy), and the controversy over late-stage or chronic Lyme disease will fade. By whatever name you call it.

Tags: Chronic Lyme disease

Do you have an appropriate Lyme disease diet?

Low-grade or chronic inflammation accompanies a bacterial infection such as Lyme disease. Chronic fatigue and lethargy are produced when the body is busy fighting infection. Reducing inflammation is key in regaining vitality and healing. It's smart to include foods in your diet to help achieve those goals.

Help your body reduce damaging inflammation with the following:

* Eliminate refined sugar and processed foods
* Reduce stress in your daily life
* Get enough early morning sunshine


Add some spice to your life -- specifically, turmeric and ginger -- to help reduce inflammation. They are both part of the same family of plants.

Turmeric is used to lend mustard its yellow color. It is used frequently, though sparingly, in Indian food. The active substance, curcumin, is a powerful, yellow dye that will stain countertops and plastic food containers. It's also a well-known anti-inflammatory. Turmeric can be taken in capsule form or you can sprinkle it onto your food. I like it on my eggs for breakfast, or added to the stir-fry veggies we often cook for dinner. A general rule of thumb is to use about a teaspoonful or less in cooking. More than that will make your food taste bitter.

Ginger root is the underground stem of the ginger plant. The powder and the grated root are often used in cooking and baking. Ginger has medicinal qualities, and due to its anti-inflammatory element has long been used to aid in arthritis and ulcerative colitis. Among other uses, ginger is antibacterial, and effective as a digestive aid.

Nearly all of the people we've interviewed for our Lyme success stories have said that modifying their diet has improved their health significantly.

* What changes to your lifestyle and diet are helping you heal from Lyme?

Tags: lyme disease Diet

You would never detect disabling pain in Stephanie's calm, cheerful voice. She sounds energized and prepared to face the future, confident that the protocol she's on will help her fully recover from Lyme. Although she feels better now, the 39 year-old has endured many years of suffering and misdiagnoses, including two years when she was confined to bed. She had recently graduated as a registered nurse when she discovered that her mysterious symptoms indicated that she had Lyme.

Her course instructors in medical school "never even mentioned Lyme disease," she says. "You'd think they would know something."

Stephanie and her husband want to have a couple of kids, but wish to wait until she gets the all-clear signal from her Lyme doctor. The illness has been tough on the couple financially. She lost her medical coverage because she could not continue to work outside her home, and she estimates that their total out-of-pocket expenses have topped $100,000. As a newlywed when she first discovered how sick she was, she's definitely looking forward to leading a fuller life with her husband.

"He's still looking forward to the 'in health' part of the marriage vow," she laughs. "He's done the 'in sickness' part."

She is optimistic about the future, now that she has been in treatment for six months with Dr. Daniel J. Cameron, MD , of Mount Kisco, New York. Dr. Cameron is the current president of the International Lyme and Associated Diseases Society (ILADS).

Initially, doctors explained Stephanie's symptoms as being caused by a Brown Recluse spider. They told her that nothing could be done except bed rest. However, as she slowly began to put together the pieces of the Lyme puzzle, she eventually recognized that she had most of the classic Lyme symptoms, including rheumatoid arthritis and unbearable fatigue. Fortunately, her research led her to Dr. Cameron.

LDRD members, please log in to listen to Stephanie's story, and hear details of her antibiotic protocol and other supplements she has found helpful.

Tags: success Story, Lyme Stories