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Tell Oprah your Lyme story

UPDATE: The link for Dr. Oz has been removed by

Oprah is interested in Lyme disease. Apparently the Lyme documentary, Under Our Skin, is getting under hers!

Click on the link below and tell your Lyme story to Oprah's Dr. Oz. If you want somebody to actually read it, keep it short, around 100 words. That's not a lot of room. Just include the date you were diagnosed, how--and if--you found a doctor to treat you, and what you're doing for Lyme treatment.

Dr. Mehmet Oz is professor and vice chairman of surgery at Columbia University in New York City, director of the Cardiovascular Institute and founder and director for the Complementary Medicine Program at New York-Presbyterian Hospital. He is a regular contributor to The Oprah Winfrey Show and

Darryl's Lyme success story

Darryl is a professional athlete. He races mountain and BMX bikes, and works as a stunt man in Hollywood. When I asked how he would classify his story, he didn't hesitate to call it a success. "I'm 100% better," he says, confidently. You can hear the relief in his voice. Talking about his future, he mentions his work and racing, but it's clear that suffering for so many years with undiagnosed Lyme has influenced his outlook as well. He's now devoted to telling his story wherever he can, and is passionate about helping others.

LDRD members, listen to the interview with Darryl.

Learn about becoming a member and listen to the interviews.

Lyme patients take the fight to DC

A bill that would direct 20 million dollars toward Lyme disease research is being held up by committee. Lyme patients showed up by the dozens this week on Capitol Hill to show Congress that increasingly, people are exposed to serious tick-borne diseases and are in dire need of more doctors who are educated about Lyme disease treatment.

Joe LeBlanc, Director of the Central Virginia Chapter of the National Capital Lyme & Tick-Borne Disease Association emailed an optimistic note yesterday from the Congressional Briefing. Joe reports that there was "standing room only" at the meeting, and despite the focus on the financial crisis, the briefing went very well. Now, we have to keep on top of our congressional representatives to keep up the momentum.

A big thank you to Joe and everyone who traveled to the Hill to speak up on all our behalf!


Stephen Buhner's DIY massage oil

For a treat, I asked herbalist, author and teacher Stephen Harrod Buhner to share a simple DIY recipe to help ease arthritis pain. Not only will it help reduce the pain, it smells wonderful! Plus, it's easy to make with simple ingredients you can find in a good healthy grocery store or co-op. And as the weather turns crispy heading into fall, a soothing massage will warm achy joints.

Stephen's book Healing Lyme, is much appreciated by many Lyme patients who can't tolerate antibiotics, or who suffer from chronic Lyme disease, have already reached their limit with standard Lyme treatment, or are simply looking for an alternative to Western medicine. He's a wonderful ally to have as we journey through our various healing paths. These are Stephen's recent books:

The Secret Teachings of Plants:
The Intelligence of the Heart in the Direct Perception of Nature
(Bear and Company, 2004)

Healing Lyme: Natural Healing and Prevention of Lyme Borrelosis and its related Co-infections
(Raven Press, June 2005)

Stephen Harrod Buhner's Arthritis massage oil formula:

Use essential oils and a carrier oil. Stephen says he normally uses olive oil as a carrier, though a lot of people prefer jojoba, which is lighter and less fragrant. The amount of essential oil used in the mix can be adjusted up or down depending on personal preference.

1) 8 ounces olive oil (or jojoba oil)
2) 1/4 tsp each of the following essential oils: juniper, lavender, rosemary, eucalyptus, German or Roman chamomile. (Alternatively, you can use peppermint, ginger, thyme, geranium)
3) Mix well.
4) Put into glass bottle, keep protected from sunlight.
5) When needed just pour a bit into the hand and massage into the affected area.
6) Let it work, takes a little while for it to penetrate the tissues.
7) Do not take internally.
8) Do not get on sensitive areas - i.e. eyes, reproductive organs, etc. or any areas of abraded skin.

Stephen Buhner's website is called Gaian Studies. He's featured in our experts interview series, talking about the challenges to Lyme diagnosis and treatment, and discussing his herbal approach to healing. Join here to listen.

Relief for painful joints

One of the most common Lyme disease symptoms is achey knees, fingers, and other painful joints. If you suffer from rheumatoid arthritis, you may find relief with moxibustion, which you can create with the heat from a lighted, tightly wrapped bunch of dried mugwort. Moxa is mugwort.

Author, Herbalist and acupuncturist Lesley Tierra, whose arthritis massage oil formula I've posted here, says many arthritis sufferers find relief from moxibustion. To use it on your knees or fingers, light one end of the moxa stick by holding it over a candle, or with a lighter. The flame will go out but the stick will still be burning, like hot coal. Hold the cool end and aim the hot end of the moxa over the achey place, close enough to feel the heat. Be careful not to touch the moxa to your skin. I've been using it on my aching knees for about ten minutes at a time, once a day. Sitting quietly for a few minutes and appreciating the soothing warmth flooding my joints has also helped remind me to slow down during a busy work week.

Moxibustion is used in Traditional Chinese Medicine to warm a patient's skin and stimulate qi, the life force. You can obtain a moxibustion bundle from an acupuncturist, which is where I got mine. It's about the same size as a cigar, and while I think it smells a whole lot nicer than most cigars, it does create a fair amount of smoke and incense while burning.


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:;

Jerry's Lyme success story

"Work with your doctors, be your own best advocate. Do research, and get a second, third, tenth opinion," says Jerry. "There is life after Lyme disease."

For Jerry, the difficulties of Lyme are a thing of the past. Although it took its toll on every day life, and his marriage couldn't hold up under the strain of the illness, he now leads a full, happy life. He's active and loves his work as a professional consultant, and proud of his two daughters, both college graduates. However, for several years during the 90s, Lyme was a force to be reckoned with.

In 1994, he and his family went for a weekend at their cabin in upper Lake Michigan. Upon returning home, he spotted a tick buried in the skin on his ankle. Over the next weeks and months, he experienced painful, swollen joints, especially his knees and fingers.

In January, 1995, Jerry was diagnosed with Lyme disease. Aside from joint pain his symptoms included severely bloodshot eyes and blurred vision that came and went. As a well-educated Lyme patient, he got used to toting a large notebook of his own to his doctor visits. A particular combination of antibiotics seemed to finally make the difference, especially when his doctor was willing to give him the winning combo for a whole year, as Jerry requested. He endured the repeated Herxheimer reactions in order to stay on the medicine long enough to fully eradicate the Lyme infection. But his problems weren't over yet. The next year, while Lyme was still active, he was also diagnosed with coronary artery disease.

While Jerry is not overweight, is an avid exerciser and non-smoker, his cardiac problems led to two different bypass operations and several angioplasties. To this day, he and his cardiologist wonder whether the Lyme infection had anything to do with his heart problems. Jerry believes that a lot of his health problems began with the tick bite.

The elements of this story are familiar, although in some ways Jerry's story is quite unusual. For example, over the entire course of his disease, his treatment was covered by a generous health insurance plan through his employer. I told him he was luckier than most. He agrees.

In March, 2007, he got a Golden Retriever to accompany him while pheasant hunting. One day, he took the dog for a run while riding his bike. A half a block from home, the dog bolted...the story continues.

LDRD members can listen to Jerry's interview. Learn about becoming a member.


$25,000 for Lyme research

I'm pleased to pass along a bright spot of news for chronic Lyme disease sufferers. According to an article in today's MarketWatch, researchers at a biotechnology company were gifted by an anonymous donor with $25,000 towards a new study to try to unlock the mystery of Lyme disease. Why do antibiotics only cure some cases of Lyme?

Researchers at Viral Genetics, Inc., are hoping to answer that question and more.

The article continues:
Research on chronic Lyme Disease, including symptoms related to the central nervous system and arthritis, has generated inconclusive and controversial results. Some researchers contend Lyme is driven by chronic infection and recommend patients be treated with antibiotics for the long term. Others support the hypothesis that the disease is the result of autoimmune T-cell activation that occurs subsequent to the initial infection or after the infection has cleared.

"Our hopes are that the information acquired from this very important study, may act as a bridge between those who contend that Lyme Disease is an active chronic infection and those who feel it is an autoimmune trigger. The answer to this question is of great importance for all those suffering in the Lyme community. Only through this information can we begin to formulate more successful treatment regimens for the chronically ill," said Dr. Steven Harris, co-investigator, Associate Professor Stanford University.

Going for Gold in spite of Lyme

23-year-old champion archer Mel Clarke of Great Britain was asked what it meant to be preparing for the Summer Paralympic Games in Bejing, which opened Sunday.

"The honor to represent your country at that level, it's incredible. I didn't think I was going to have the opportunity."

Lack of confidence in her athletic ability was not the reason for Clarke's doubt. Rather, it was a tick bite that had resulted in Lyme disease.

In 2003, Clarke was paralyzed and partially blinded by Lyme disease. She was told she'd never shoot the bow again. Since age 11, she has used a wheelchair due to arthritis. A fearless competitor, she rejected the notion of giving up her dream of gold. Instead she worked hard to heal from Lyme's brutal symptoms and recover movement, sight and agility. Three and a half years ago she began training for the 2008 Paralympic Games.

The Summer Paralympics began in Rome in 1960, for athletes with physical, mental or sensory disabilities. They are held in the same host city as the Olympic Games, and run by the same organization. They begin three weeks after the Olympics closing ceremony. "Para" is from a Greek word for "alongside," and is not related to "paralyzed."

Mel Clarke currently holds 20 county records, 10 national able-bodied records and eight world records. In addition to going for the gold in Bejing over the next few weeks, she is also eagerly anticipating competing in her home turf in the London Olympic Games in 2012.

Chronic Lyme Disease

Chronic Lyme disease is controversial. It is what appears to affect those of us who still suffer from Lyme symptoms after finishing a standard IDSA recommended dosage of antibiotics. In some cases, chronic Lyme manifests in Lyme patients who received antibiotics for treatment, but weren't given a strong enough dose for a long enough time.

Some Lyme symptoms seem almost livable. Tinnitus, for example. Talking from personal experience only, I can live with it. This is not to say that I like it. On the contrary. I'm a classically trained musician, peculiarly sensitive to noise. You know those people who wince at the out-of-tune piano at the community concert? That would be me. I'm not exactly proud of that, just sayin'. So, losing my hearing partially to tinnitus has really sliced into my enjoyment of natural sounds. The tinnitus might go away some day. For now, it sure seems chronic. There are metallic crickets playing at varying volumes inside my head, 24/7.

Other chronic Lyme symptoms are far more serious. For example, medical evidence suggests that rheumatoid arthritis is one result of untreated, or undertreated Lyme disease. As many as 60% of people with untreated Lyme may develop chronic arthritis.

Central nervous problems, such as facial paralysis and meningitis are said to occur in 10 to 20% of people who are undertreated or never treated for Lyme.

Heart symptoms occur in a small percentage of Lyme patients. A jumpy, pounding irregular heart can vary the gamut from being not at all bothersome, to very scary. The jumpiness can occur either because of an infection in the heart, or an electrical conduction that requires the patient have a pacemaker implanted.

Chronic Lyme is controversial because doctors don't all agree that these long-term symptoms of Lyme are indeed still considered Lyme. Whatever you call them, they need to be tended to.


Deer ticks and other critters

"My dog has Lyme. Could I get it from her?"

No. If you are bitten by a tick, you may get Lyme. Your dog cannot give it to you directly. However, you may both get it from the same infected tick. Being bitten by a tick that crawled onto you when you were snuggling or letting her sleep on your bed is more likely. Ticks don't jump, like fleas. They crawl.

These ticks and others can be vectors for Lyme and other bad diseases. Vector means they are animals that can carry disease to humans.

* Deer Tick (Ixodes scapularis)
* Western Blacklegged Tick (Ixodes pacificus)
* Lone Star Tick (Amblyomma americanum)
* Avian Tick (Ixodes auritulus)

Search Term: Lyme disease tick.

According to Eva Sapi, PhD, biologist and director of the Lyme research program at the University of New Haven, Connecticut, the ticks collected in the NE region of the US this year have shown a higher percentage of Lyme infection than in the past. Not only are there greater numbers of ticks than in the past, they're also more likely to be carrying Borrelia burgdorferi, the Lyme bacteria.

Your dog, cat, or horse might inadvertently share a Lyme-infected tick with you. Do be careful and perform regular tick checks all over your body whenever you've spent time with them. If you rarely venture into the woods or onto the seashore without slathering your body with DEET, and make your kids stay in your own yard to play, you may not think you are putting yourself or your loved ones in harm's way. Unfortunately, it's tougher than that to steer clear of tick habitat. Lyme researchers tell me there are plenty of ticks in our own yards, not just in the wild. Where we live in North Carolina, deer regularly walk along the side fence, where they're nicely hidden by the dense woods in the lot next door. I only spot them when I'm spacing out while staring past my computer monitor, out the office windows. One time I thought I saw a whole section of tree branches move away from the tree. On closer inspection, I realized with a start that I had been looking at a beautiful buck with a giant rack. Deer are survivors. They are excellent at adapting to living in urban areas, and they are often covered in ticks.

I'd love to have a yard full of guinea fowl, who find ticks a tasty treat to eat. However, they're super noisy and I'm afraid they'd drive me and the neighbor, who is also a writer and works at home, batty with their cry.

Tell me what you do to avoid (or control) ticks?