Lyme Disease News Blog

Happy New Year

Lyme Disease Research Database — 2009-01-05T19:26:23-05:00

Best wishes for 2009!

Give yourself a pain break

Lyme Disease Research Database — 2008-12-23T18:53:31-05:00

Illness doesn't take vacations. You don't get to clock out for long weekends of R & R. There are no breaks, no furloughs, no specific date you can circle on the calendar, flipping the pages and counting the days. Dealing with Lyme is a full time gig, especially when your symptoms are acute or you're in the midst of a flaring herx.

Since nobody at Lyme Headquarters is going to pop their head out the door, shake your hand, and tell you to go home and put your feet up, we need to remind ourselves. Take the opportunity to take a break. The whole world celebrates at this time of the year. Being sick now feels a bit like being the kid at boarding school with no parents coming to pick her up for summer. So even if you feel lousy, you're in pain, you wish you could formulate a complete sentence without forgetting what you were talking about...take time out. I've done it, and you probably have too, so I know it's possible.

When I was in an acute stage, bedridden and miserable, pain-breaks were few and far between. I learned a couple of tricks, a little mental prestidigitation. One was to watch funny movies and laugh. Out loud. Belly laughter is more than physical, it's a state of mind. It takes complete control of your attitude. It's really hard to be miserable and laughing at the same time. And for those few precious moments, I didn't feel the pain. In fact I felt happy, normal, and like everything was going to be alright.

Another trick I discovered, which isn't a trick but really more of a visualization, is to imagine another person, someone you either know or don't know, who is suffering worse than you. Sadly, we don't have to look far. Hold a picture of that person in your mind, take a deep, relaxing breath, and as you breathe out imagine all the pain and sickness draining from them. Whenever I do this, I can vividly imagine that other person smiling and rosy-cheeked, and I instantly (even if only for a moment) feel better too.

A doctor friend of mine tells me these little tricks are very healthy. She says they can even help break the cycles of pain involved in many chronic illnesses, cycles known as the pain cascade.

So take a pain break. Get on the phone to a long-lost friend, or e-mail them if talking is too tiring. Send e-mail notes to all your loved ones wishing them a happy holiday -- e-mail is less expensive and less work. Cut and paste. Watch a comedy on TV or rent a funny movie and let yourself get caught up in the silliness. Find a kid and tell them a knock-knock joke. I bet they'll have one for you, and it just might make you feel better.

We'll be here after your break, to wish you well, as always.

Happy holidays, everybody. Cheerio.

Immune system support

Lyme Disease Research Database — 2008-12-21T19:57:36-05:00

A few subscribers have said they're curious about my own particular healing protocol. We all know that there's no silver bullet where Lyme is concerned (although we wish) and that what works for your cousin or someone on your Lyme forum may not work for you, and vice verse. So keep that in mind. For the record, I feel great these days -- nearly normal (what a concept! Was I ever?). My routine is a blend of Dr. Cowden's and master herbalist Stephen Buhner's Lyme protocols, with a handful of other stuff thrown in for good measure. I get enough sleep, eat organic vegetables and fruits, try to exercise every day, and take probiotics.

One thing that I've learned from my own experience, as well as from talking to Lyme specialists and others who are healing, is that when you take antibiotics you must replace the friendly bacterial flora in your gut. Otherwise, "you can cause problems for yourself that are just as harmful as the Lyme symptoms themselves," says cardiologist and Lyme researcher Dr. Lee Cowden, whose herbal protocol for Lyme disease has helped many people. Even long after you stop taking antibiotics, probiotics can assist in bringing balance to your intestines. The intestines play a central role in the human immune system, and getting better is in many ways dependent on supporting the immune system.

So I want to mention something else I also take daily, a lactobacillus-based supplement that supports my immune system. I take 2 to 4 capsules daily, more if I feel stressed. It's called Del Immune V. A friend of mine sent me some when I first got diagnosed and I haven't been without it since. She takes it religiously too, as part of her protocol for hepatitis C. I have seen its effect on her, and the stuff is good. It seems to banish dark circles under her eyes, and best of all it seems to help lift her back to her natural wise, warm and witty self.

Although I haven't taken pharmaceutical antibiotics for two years, I've continued to take this high quality probiotic from Bulgaria. Although I may run out of other supplements and let them slide from time to time, I try to never go without Del Immune. It's made from a strain of lactic acid bacteria -- lactobacillus -- more precisely known as Lactobacillus rhamnosus, DV strain. The lactobacillus is cultured, then digested with natural enzymes that are an exact match to the enzymes in the human intestine, creating a product that is made of cell wall fragments containing pieces of cell DNA.

No silver bullets, but smart choices. Like eating organic and treating your tummy, and your immune system, with care.

Expert Interview Series: Carol Fisch

Lyme Disease Research Database — 2008-12-19T16:59:05-05:00

Carol Fisch is Adjunct Professor Emeritus of Laboratory Science. She is also a stealth pathogens researcher, teacher, and, as she also suffers from Lyme disease, an advocate and activist for those suffering from stealth pathogens and neuroendocrine disorders. In her outreach education, she explores the possibility that people with a diagnosis of Fibromyalgia and Chronic Fatigue Syndrome are dealing with a bacterial complex that also causes Lyme disease, among other illnesses.

"Most medical professionals, when speaking of Lyme disease, are typically referring to an outdated and over-simplified version of the disease that was once taught and believed that the main causative agent being dealt with was the Borrelia spirochete. We now know there are many agents involved," explains Carol.

"Many patients given a CFIDS or Fibromyalgia diagnosis, or a Gulf War Syndrome or Neuroborreliosis Complex (Lyme disease) diagnosis, are dealing not only with a spirochetal disease that causes multiple damage to the host but a very complex organism that causes multiple damage to the host. It is indeed a very complex organism within itself. Borrelia burgdorferi is one of the players in Neuroborreloiosis Complex."

Carol says she would like to see the medical community work more harmoniously together in an effort to find answers to the complicated challenges of these illnesses. She is hopeful that such unity is possible and imminent. As she says, "we have a long way to go but in working together hopefully we can come up with answers that help all of us to live healthier and more productive lives."

Carol's experience includes having been a medical laboratory advisor for tick borne illness testing. She is well-versed in microbiology, immunology and parasitology and has an excellent understanding of Cell Wall Deficient Organisms (CWD). I spoke with Carol about the significance of her work and research on Dec 11, 2008.

Members can log in and listen to the interview.

Let's Get the Lyme movie on Oprah

Lyme Disease Research Database — 2008-12-14T12:32:52-05:00

Dr. Mehmet Oz of the Oprah & Friends Network aired a 45-minute interview with director Andy Abrahams Wilson and medical correspondent Kathy Fowler on his nationally syndicated talk radio show November 26, 2008. Dr. Oz, a renowned surgeon and health expert, said "I was so moved!" and called Under Our Skin "a beautiful film...a whole different way of thinking about reporting on health."

Moved as he was, Dr. Oz expressed interest in trying to get Under Our Skin on Oprah, where he is a regular guest contributor. But first, in order to gauge viewer interest, Dr. Oz and Oprah need to hear from you. Here's what you can do -- and please remember to praise Dr. Oz's coverage of the issue and the film.

So now we know that we are on Oprah's radar... that is a big deal. But so far, there has not been an impressive enough response to Dr. Oz's show.

We need more. Get your friends, family, co-workers, doctors, nurses, anyone and everyone you know to write Dr. Oz. There are Lyme groups around the world - everyone needs to be passing this info along and getting everyone to email in. Can everyone post it everywhere.. email in. Ask friends and other people who know what you are going through to contact Dr. Oz.

Getting on Oprah would be a very huge deal.

Here is the info again to Email Dr. Oz.

Also, you can leave comments on Oprah's community forum.

Memory games

Lyme Disease Research Database — 2008-12-12T14:25:34-05:00

One Lyme symptom I really hate is the word-finding problem. You know how it is. You're talking to a friend and suddenly the word you're looking for seems to have been sucked into a black hole. It's not merely gone -- it's non-existent. Frustrating, huh? The good news is, you can improve your word recall by playing memory games. It doesn't take long, maybe 10 or 20 minutes a day. As with physical exercise, when you're consistent you see improvement.

Wordjuxtapoz.com, lumosity.com and mybraintrainer.com offer different types of memory games, ranging from easy to very difficult. With practice, you can improve your brain processing speed and other cognitive functions. Games are addictive!

You don't have to go online, of course. Take that puzzle-in-a-box down from the shelf, dump out the zillion little pieces on a card table and pull up a chair. Our family always has at least one puzzle going around the holidays. It's a comfortable way to pass a rainy day together. Improving your concentration and recall by focusing on detail is an active, healthy way to participate in your healing journey. And you won't be thinking about Lyme bugs.

Natural-born killers

Lyme Disease Research Database — 2008-12-11T11:22:50-05:00

There's a spot of good news in Lyme research this week. Scientists trying to ferret out the role of NK (natural killer) T cells in white blood cells know that dysfunctional or deficient NK T cells seem to lead to autoimmune diseases, such as diabetes, cancer and rheumatoid arthritis -- the kind that plagues the knees of many chronic Lyme sufferers. It seems that these natural-born killer T cells play a big part in helping to clear out bacterial infection. Read on:

RESEARCHERS FROM LA JOLLA INSTITUTE AND ALBANY MEDICAL COLLEGE IDENTIFY CELL GROUP KEY TO LYME DISEASE ARTHRITIS

Research Shows Important Role of NK T cells in Fighting Lyme Disease

SAN DIEGO – (December 3, 2008) A research team led by the La Jolla Institute for Allergy & Immunology and Albany Medical College has illuminated the important role of natural killer (NK) T cells in Lyme disease, demonstrating that the once little understood white blood cells are central to clearing the bacterial infection and reducing the intensity and duration of arthritis associated with Lyme disease.

Click here for the full press release.

Getting enough protein

Lyme Disease Research Database — 2008-12-05T15:44:18-05:00

Jean Reist, RN, tells me she is concerned about her vegetarian or vegan Lyme patients. She worries that they aren't getting enough protein, which is crucial in a healing diet. Protein, she says, is required to maintain a fully-functioning immune system. Being one of those people who hasn't eaten red meat since 12th grade when I ditched school to sit and scarf down Macs and fries with my buddies, I listen carefully when I hear Lyme specialists discuss the need for protein.

Protein works through the lymph system to help carry nutrients to your cells, and carry away the waste. Jean says she practically begs her patients who won't touch meat or fish to consider eating an egg or a slice of cheese. Her concern is that many people who call themselves vegans and veggies often fail to educate themselves about alternative sources of protein. Instead of eating a balanced diet, they simply consume more pasta and grains: more carbs.

Carbohydrates increase inflammation, which is exactly what we Lymies are trying to avoid. So although it's very easy to fix up a plate of spaghetti with a quick and tasty marinara sauce when you're cold and tired, it may only exacerbate your Lyme symptoms.

Meat, cheese and fish is all good, if it works for you. However, many health and diet professionals believe it is possible to get enough protein on a high quality vegan or vegetarian diet. You must educate yourself. Protein is available in foods such as phytoplankton, beans and kelp. Mmm, right? I know some of you don't consider phytoplankton food, unless you're a Baleen whale fitted with a special feeding mechanism.

Although I haven't consumed fast food since high school days, I am not a vegetarian. I have a weakness for salmon and goat cheese. I do take supplements, however, like so many people dealing with Lyme, and because I know that protein is a must for keeping my immune system in check, phytoplankton capsules are high on my list of daily requirements.

If you're a vegan or vegetarian, how do you get enough protein? I'd love to hear from you.

Lyme bugs crave sugar

Lyme Disease Research Database — 2008-12-03T14:29:19-05:00

Lyme bugs love sugar. However, Lyme symptoms may flare if you help yourself to the enticing cookie buffet. Cravings for certain foods, such as holiday desserts, are emotional, not physical. A plate of sugar cookies and a steaming mug of hot cocoa goes so perfectly with gray skies and long winter nights, right? Lyme disease, and any chronic disease, re-educates us about our cravings and appetites. Sugar makes the bugs happy and carbohydrates can increase inflammation. Lyme forces us to reconsider what makes us truly feel good. What foods add value to your healing? What foods subtract from it?

Sometimes we think we're choosing a healthy substitute when we're actually only making the problem worse. Tod Thoring, ND, recommends that you work with not just one doctor on your healing journey, but several. If possible, consider consulting a Lyme-literate nutritionist or naturopath.

Jean Reist, RN, who treats Lyme patients at a Pennsylvania clinic, told me that one of her patients decided he'd quit sugar, although he was addicted to Coca-cola. She'd informed him that his daily habit would keep him from healing, and that was enough to help him quit cold turkey. He got well enough to return to work, so he went back to his construction job. However, he missed his daily fix, so he picked up some Diet Coke and swigged it down.

Within days, his energy was totally drained and he was feeling sick again -- too sick to go back to work. His Lyme symptoms returned. He dragged himself back to Jean's office and told her about switching to Diet Coke. She told him that although it didn't contain sugar, it contained an artificial sweetener called aspartame, which is also sold as NutraSweet. The effects of substitute were even worse than regular sugar.

If strings of Christmas lights and gently falling snow make you want to bake a pumpkin pie, think about the Lyme bugs. They want more sugar -- don't let them have it. Although the herbal sugar substitute stevia is not sanctioned by the FDA as an artificial sweetener, many people use it in place of sugar. Try some in a cup of hot green tea, with a thin slice of fresh ginger. Ginger has long been promoted by herbalists for its overall soothing and warming effects. It may not replace the hot chocolate, but it will help take the chill off the cold winter nights.

Members, please visit the Interviews with Experts page for interviews with Tod Thoring, ND, and Jean Reist, RN.

Dr. Oz interviews Under Our Skin filmmaker

Lyme Disease Research Database — 2008-11-24T14:52:33-05:00

We received a flood of comments about Oprah's interest in Lyme disease. She's listening! And now there's someone you'll want to listen to as well.

You can hear Oprah's Dr. Oz this week on XM Radio as he interviews filmmaker Andy Abrahams Wilson, whose Lyme documentary Under Our Skin is helping turn the tide of attention toward this controversial and misunderstood disease.

The show airs Wednesday, November 26th at 1 a.m. 7 a.m. and 6 pm EST. Oprah and Friends producers say people who don’t subscribe to the satellite radio can also listen by going to http://www.oprah.com/radio and clicking on the “Free 30 Day XM Radio Trial.” Register and you can listen online.

Dr. Oz asks for Lyme patients to tell their Lyme stories.

HBOT for Lyme

Lyme Disease Research Database — 2008-11-19T16:57:44-05:00

Like many serious diseases, Lyme disease causes an oxygen deficiency. One very distressing symptom is often called "air hunger," and it can make you feel like a fish out of water. No matter how deeply you breathe, you just can't seem to get enough air.

Increasing the available oxygen is a must for healing. Any sort of exercise that increases your oxygen intake seems to be invaluable for beating Lyme, and most of the people I've interviewed who are healing or healed from Lyme engage regularly in physical exercise, activities ranging from brisk walking, running to swimming and vigorous biking.

Some people use Hyperbaric Oxygen Therapy as an adjunctive Lyme treatment. HBOT administers oxygen at high atmospheric pressure, saturating the body with oxygen and increasing the total available amount. To receive a treatment, you climb into a chamber where pure oxygen is delivered at three times the normal atmospheric pressure.

Among US doctors, HBOT is controversial, although it has been commonly used for many years to treat burns, injuries from car accidents, carbon monoxide poisoning, smoke inhalation and other sorts of trauma. It has also proven valuable in treating people with AIDS and HIV, and others who suffer from opportunistic infections resulting from immuno-suppression.

HBOT is widely used in Europe and other countries to treat people suffering with multiple sclerosis, those who are recovering from strokes, and people suffering from drug and alcohol addiction. Although HBOT is still controversial in the US, it is gaining acceptance and used by conventional and alternative doctors.

Have you used HBOT as an adjunctive Lyme treatment? If so, I'd love to hear about your results. Please drop me a line.

Lyme documentary filmmaker's speech

Lyme Disease Research Database — 2008-11-18T13:31:18-05:00

When filmmaker Andy Abrahams Wilson began making his Lyme documentary, Under Our Skin, he was driven by compassion and curiosity, two potent characteristics that led him to uncover the stories of many people who were struggling in silence. By winning the Vision of Hope Award from the prestigious Turn the Corner Foundation, Andy hopes the film will lend its weight to the collective tipping point needed to bring Lyme disease to the forefront of public awareness.

"My being was changed irrevocably by what I witnessed: suffering, injustice, and deafening silence. And above all: the courage of so many to persevere, to fight for life amidst the eclipse of light: the pain, fear, loneliness, and the mantra ‘It’s all in your head,’ " he says.

Read the full text of Andy Abrahams Wilson's acceptance speech for his Vision of Hope award on the Under Our Skin blog.

Joe's Lyme success story

Lyme Disease Research Database — 2008-11-14T14:28:26-05:00

"I beat Lyme. I'd like to share my story," wrote Joe. To someone hurting with Lyme symptoms, could there be any sweeter words than those?

Joe's story filled me with inspiration. "Don't give up hope," he says, and he should know.

Although he now resides in Europe, he grew up in a region of the US where ticks are a part of everyday life, especially for a kid with a dog. Sick during his childhood with mysterious symptoms that he was eventually told he had outgrown, he struggled with chronic pain many years later. After a vacation in Barcelona, he became very ill and dragged himself from doctor to doctor, as one after another refused to treat him for Lyme. He was desperate and suicidal during the roughest period, which lasted six years. At the end of that time he discovered a newly established Lyme treatment clinic in Germany, the Borreliose Centrum Augsburg, and his life took a dramatic turn for the better.

At the clinic, his recovery from Lyme officially began. He was placed on three months of IV antibiotics, but not a "cocktail" blend that some US Lyme doctors use. Immediately, he began feeling better. In addition to antibiotics, doctors at the clinic engaged him in several types of the supporting therapies, including infrared and oxygen treatments. He also uses the powerful herbal therapies from Stephen Buhner's book, Healing Lyme.

Today, Joe has returned to the working world. The terrible six year period now seems surreal to him. "It's an intense pain that doesn't go away, and nobody can understand it," he says. "It's confusing for the person who has it, trying to explain it to their friends and their employers."

Joe feels strongly that people who heal from Lyme should follow up with their doctors, so medical professionals can better track which Lyme treatments are working, and which are not. He has talked to doctors who tell him that often patients leave their care and never update the doctors about their condition. Unfortunately, it's easy to find stories of people suffering from Lyme disease, yet less common to hear about those who are healing and engaged in vital and productive lives again. There's plenty of bad news on the web. This is why we collect and share success stories.

LDRD members, listen to Joe tell his success story here. And please keep your eye out for an upcoming interview with Joe's doctors at the Borreliose Centrum Augsburg.

LDRD members can listen to the interview with Joe by logging in. Learn more about becoming a member.

Under Our Skin filmmaker honored

Lyme Disease Research Database — 2008-11-07T15:11:18-05:00

Congratulations to filmmaker Andy Abrahams Wilson, who is being honored this week at a Turn the Corner Foundation event in New York City. Andy's heartwrenching and eye-opening documentary film, Under Our Skin, exposes the medical establishment's frequent dismissal of people suffering with Lyme.

From the press release: Turn the Corner will present the Vision of Hope Award to Andy Abrahams Wilson, Producer/Director of Under Our Skin, a film that investigates the shocking human, medical and political dimensions of Lyme disease, for his efforts to raise awareness for chronic Lyme disease. Leading Lyme-literate physician, Bernard D. Raxlen, MD, will receive the Humanitarian Award for his dedication to treating patients with tick-borne diseases, including Lyme.

"TTC is doing important work for the Lyme community, and has been a great force behind Under Our Skin," said Andy Abrahams Wilson. "Thanks to our joint efforts, the mainstream medical establishment can no longer ignore or marginalize chronic Lyme disease and its sufferers."

Andy is a featured expert in the LDRD's interview series.

The Lance Armstrong of Lyme disease

Lyme Disease Research Database — 2008-10-31T15:03:25-04:00

Caryn "CJ" Jaffe is pure bottled sunshine, a powerful and amazing model for those of us who are sick and determined to get better. She calls herself the Lance Armstrong of Lyme disease. Although she is "bombarded with Lyme symptoms every day," she's worked hard and prepared to compete in an ironman event on Saturday, November 1. What's the lesson for the rest of us? We can do it too. Maybe not race in an ironman, however, we can find the inner strength to set a big goal and then work to reach it, no matter what obstacles are in our way.

"I found out my bib number is 81 (no idea how I ended up with such a low number...it doesn't mean anything but it's kinda cool!)," she told us. "People can go to ironmanlive.com and search for me by name or bib number on race day, 11/1/08."

"I am starting to get very emotional about being a part of this race," says CJ. "I honestly never thought I could make it back to being this kind of an athlete. It truly is a miracle of sorts. I cannot wait to race. Just to get to that starting line is leaving me speechless. I am excited to see what the journey holds during and afterwards!"

Please follow CJ's race online, and forward this story to anyone you know who could use a shot of inspiration. I recently interviewed CJ for our Lyme Success Stories, so members can also listen to her tell her remarkable story. This little firecracker is also going to make a huge explosion with the book she's writing about her struggles with Lyme disease and her grit and determination in fighting her way back to an active life, one that even Lance Armstrong would be impressed by!

It's no coincidence that many of the people who are beating Lyme are dedicated to regular physical exercise. Ask your Lyme-aware doctor about starting an exercise program that is appropriate for your condition.

Ready...set...get better!

Beating Lyme takes courage

Lyme Disease Research Database — 2008-10-10T21:56:36-04:00

Advocating for yourself requires courage. For years I've suspected that chronic Lyme patients have got to be some of the gutsiest people around. After listening to the personal success stories of a number of people who are beating Lyme, it appears that courage is an ingredient they have in common.

For example, Darryl tells about his fierce battle with Lyme symptoms, his struggle to find adequate medical help, and ultimately, his success. As he explains, he makes a living as a professional athlete, racing bikes and working for the studios as a stunt man.

Stunt work is dangerous. These guys and gals deal with a gamut of risky activities, such as faked accidents, explosions, and racing away from the scenes of television crime. It's safe to assume that a stunt guy would have guts.

But imagine the courage it took for Darryl to lose the physical ability to work, to have to begin advocating for himself without any help from friends or family members, to fill out form after form of insurance information. To live alone on disability for a period of three years. And all the while, to endure the intense symptoms that we've all experienced in varying degrees, thanks to this pernicious disease.

Of course, you can easily imagine his situation, because yours is probably not so different from his. You may not be a stunt guy (or gal), but your struggle has undoubtedly been just as difficult.

Are you beating Lyme? I would like to hear--and share--your success story. Write to me here.

ILADS to train more doctors

Lyme Disease Research Database — 2008-10-03T19:38:20-04:00

As you are probably all too well-aware, we have a desperate need for more Lyme disease specialists. Driving or flying thousands of miles to see a Lyme literate doctor is not a luxury that most of us can afford.

According to this article in MediLexicon, the International Lyme and Associated Diseases Society (ILADS) has started a new training program to teach more doctors how to diagnose and treat chronic Lyme disease. With financial assistance from the New York-based Turn the Corner Foundation, the program aims to train 100 doctors over the next five years.

"With more than an estimated 200,000 of cases annually, Lyme disease has become the leading epidemic of our time," said Dr. Daniel Cameron, ILADS board president and internal medicine physician. "We need more physician-scientists who will be the future leaders in the treatment of Lyme and associated diseases."

Many physicians are not aware of the complexities of tick-borne diseases, and patients with Lyme symptoms are too often misdiagnosed, under treated or simply dismissed. The disease now known in the medical community as the Great Imitator can be a superb mimic of a hundred other conditions, especially if it hasn't been treated correctly when in the early stage. This is due to the complex nature of the Lyme bacteria, which has the capacity to hide from the body's immune system in order to protect itself. Doctors who are trained to recognize and treat Lyme symptoms will help increase awareness of the disease.

The ninth annual ILADS 2008 conference will be held on October 18-19 in San Francisco. Entomologist Willie Burgdorfer, who discovered the Lyme bacteria we know as Borrelia burgdorferi or Bb, is scheduled to be the keynote speaker. Several hundred physicians from across the globe will be in attendance. For Lyme researchers and medical specialists who treat Lyme patients, the conference offers an opportunity to collaborate and learn about each others' work.

Tell Oprah your Lyme story

Lyme Disease Research Database — 2008-09-30T19:45:42-04:00

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

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 Oprah.com.

Darryl's Lyme success story

Lyme Disease Research Database — 2008-09-26T19:24:34-04:00

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

Lyme Disease Research Database — 2008-09-25T11:01:33-04:00

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!

Watch the news video.

Read the article.

Stephen Buhner's DIY massage oil

Lyme Disease Research Database — 2008-09-19T20:17:57-04:00

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

Lyme Disease Research Database — 2008-09-18T13:39:40-04:00

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.

Read more about Lyme disease treatment.

Send your doc to SF

Lyme Disease Research Database — 2008-09-16T21:33:39-04:00

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.

Jerry's Lyme success story

Lyme Disease Research Database — 2008-09-12T17:27:00-04:00

"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

Lyme Disease Research Database — 2008-09-11T16:51:42-04:00

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

Lyme Disease Research Database — 2008-09-08T12:46:53-04:00

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

Lyme Disease Research Database — 2008-09-05T16:49:28-04:00

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

Lyme Disease Research Database — 2008-09-01T13:00:23-04:00

"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?

Lyme disease in dogs

Lyme Disease Research Database — 2008-08-26T13:46:37-04:00

Are you and your dog both at risk for Lyme? It's terrible to think so, yet those energizing hikes through the forest that you and your canine pal adore may be putting you at a greater risk for infection. Even if you're not a frequent hiker, you know how man's best friend loves to rummage through the bushes around the edge of the yard and snuffle through piles of leaves. Hedges and leaf piles are prime hiding spots for ticks.

Lyme is endemic in the northeastern US, and increasing incidences of the illness are being reported in northern California and the Pacific northwest. Dogs living in other parts of the country may be at less of a risk for exposure. But before you allow yourself to believe your dog is out of the woods (so to speak), bear in mind that Lyme infection has been reported in every state.

Lyme in dogs manifests differently than in humans. When bitten by an infected tick, 30 - 50% of people will develop a skin rash and flu-like symptoms. However, dogs are not likely to develop symptoms for many weeks or months. Your dog might exhibit signs of arthritis from painful joint inflammation, or he might run a fever. Your veterinarian can prescribe a course of antibiotics such as doxycycline or Amoxicillin, which many dogs respond well to. As in humans, all the bacteria may not be killed with this course. Long term or chronic Lyme may or may not be a problem for our beloved buddies.

According to an article by Wendy C. Brooks, DVM, DipABVP Educational Director of VeterinaryPartner.com, dogs do not tend to develop neurologic or heart issues.
However, kidney disease may occur in response to stimulation by latent pathogens over a long period of time.

Preventing Lyme infection might be possible with the use of powerful tick repellents and collars. However, even if you use these agents you should take the time to check your dog daily for ticks whenever you think there has been exposure. There is no hard evidence to prove that a tick must be attached for 48 hours before it can spew its Lyme bacteria into the animal on which it's feeding. If the tick is disturbed while feeding, it may dump its toxins into the bloodstream of the host animal.

If you find a tick on your pet, grasp the tick firmly but gently with a tweezers and pull it straight out without twisting or turning it.
Never suffocate the tick by putting anything on it, such as Vaseline or soap. Doing so may cause it to unload its bacteria before you remove it.

The bad news is that diagnosing Lyme disease in dogs is as tricky as it is for humans. Spirochetes are notorious for being able to hide masterfully from the host's immune system. Therefore, detecting antibodies to the Lyme bacteria is nearly impossible. If you and your vet suspect that your furry buddy might have Lyme, the good news is that a 2 - 4 week course of antibiotics should bring your pet relief from symptoms quickly, within 48 hours.

Marguerite's Lyme story

Lyme Disease Research Database — 2008-08-22T18:03:39-04:00

"It's been a rollercoaster," says Marguerite, who began looking for a Lyme literate doctor when she first contracted the disease many years ago. She had just experienced the death of her second husband. She had two adorable puppies, and was active in church, taking yoga, working and staying physically fit when she discovered she had Lyme disease. Living in the heartland of Lyme in Fairfield, Connecticut, she was bitten more than once.

She got herself to an infectious disease doctor the minute she detected a tick bite, and was given short courses of doxycycline, which she now suspects were not long enough. She even received the controversial Lyme vaccine, which was only available for a brief period of time due to its ineffectiveness.

This is a frustrating and familiar story: Marguerite's Lyme symptoms began as flu-like feelings and migraine headaches. Her severe low back pain and neurological challenges made it very difficult to work, even though her company allowed her to work from home. She developed apnea, insomnia, painful swelling in the joints and more. She's gone to three infectious disease doctors who she says won't even listen to her positive test results for Lyme. Today, she uses patches for pain control, and is actively looking for a Lyme aware doctor to treat her.

We wish you well, Marguerite!

Members can listen to Marguerite's story. Please consider joining the LDRD.

How to find a Lyme doctor

Lyme Disease Research Database — 2008-08-20T17:07:54-04:00

Currently, there are two standards of treatment for Lyme disease. If you have Lyme symptoms, or suspect you may have Lyme, please contact a Lyme literate medical doctor, or LLMD. Go to the Lyme Disease Association doctor referrals page.

You'll need to register using your email address, and follow the simple directions to find a doctor near you. It doesn't take long and it's easy to do. If you need a Lyme specialist, we urge you to find one soon.

Infectious disease doctors (IDSA) may not have knowledge of Lyme disease, and may lack the experience that ILADS specialists can offer in diagnosing and treating Lyme. ILADS member Ginger Savely, RN, has treated over a thousand patients suffering with Lyme symptoms. She says "you can get better!"

If Lyme is left untreated it can be debilitating. The good news is you can get better. Find a doctor who knows how to diagnose and treat Lyme now.

CJ's Lyme success story

Lyme Disease Research Database — 2008-08-19T11:58:57-04:00

"You've gotta hear this!"

That was the subject line in CJ's note to me the other day. Turns out she was right -- I did. I just hung up this minute from our conversation, and I'm still smiling. She's one of those sunshiny souls that just can't help but affect people that way. What does she do for a living? She's the office manager of a trapeze school. Not your normal occupation, but then CJ isn't your average person. Actually, she participates in ironman competitions. Does she still have Lyme? Yes. Does she let it bring her down? If she does, she's not letting it show.

CJ's success story, like everyone who has struggled to defeat the disability that can accompany Lyme disease, comes at a price. She was misunderstood and misdiagnosed for a long time. As a teenager, she attended music camp where she concentrated on her highly developed skills as a flautist. Gifted on both the flute and piccolo, and disciplined about practice, she was headed for a life of professional music.

However, a tick bite that she got at camp stopped her in her tracks. She called home, begging her puzzled mother to let her leave early. Her mom knew something was seriously wrong.

CJ's story takes many jogs and unexpected turns. She falls in love, marries, then deals head on with an unsupportive spouse (a bastard and a s^%#head, to quote her precisely). And the most remarkable thing happens. She finds inspiration in a nine-year-old leukemia patient facing two years of chemotherapy. She is a nurse. At his bedside, she tells him that she's going to run in a charity race on his behalf. He looks at her, asks "can you run?"

LDRD Members can login (to the left) and listen to CJ's story.

Become a LDRD member and get immediate access to all of our audio interviews.

Who inspires you?

Lyme Disease Research Database — 2008-08-11T10:44:54-04:00

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?

IDSA Lyme guidelines to be reviewed

Lyme Disease Research Database — 2008-08-07T15:52:44-04:00

The IDSA is now accepting applications for members to serve on the review panel of treatment guidelines for Lyme disease. Urge your Lyme aware doctor to apply. This is their opportunity to serve the people affected by this epidemic.

In May, 2008, the IDSA agreed to have an independent panel review the guidelines, to determine whether they need to be revised or not. The agreement was part of a settlement reached when Attorney General of Connecticut, Richard Blumenthal, called for an antitrust investigation into the writing process of the 2006 IDSA guidelines for Lyme treatment.

This is a historic moment in US medical history. Although review of treatment guidelines is a normal part of IDSA procedure, this is the first time it has been legally ordered to invite an independent panel of doctors and scientists to conduct the review.

From the IDSA website:

"A panel of eight to 12 physicians and scientists will be assembled to review and critically appraise the literature on Lyme disease. The panel will also consider data and other information submitted to IDSA and will hold a public hearing where individuals may present data to the panel for consideration. At the conclusion of this process, the review panel will evaluate whether each of the recommendations in the 2006 guidelines is supported by the scientific evidence and will make a recommendation to IDSA as to whether its 2006 guidelines should be revised or updated. Any proposed recommendations shall require a supermajority of 75 percent or more of the total voting members of the panel."

The review time is estimated to take 8 - 12 months. We'll be keeping an eye on the entire process, and posting our notes here. Especially interesting will be the public hearing, which will be available for viewing online at the IDSA website.

ABC Great Lyme Debate - Part 3

Lyme Disease Research Database — 2008-08-06T15:47:48-04:00

Part 3 of ABC's Great Lyme Debate.
Families and whole neighborhoods have contracted this debilitating disease.
Watch how experts gather ticks on a collecting expedition.

Please watch and share this educational video, and drop a note of thanks to journalist Kathy Fowler at ABC, for calling attention to Lyme disease. Our comments matter.

ABC covers Lyme debate - part 2

Lyme Disease Research Database — 2008-08-04T16:33:43-04:00

LDRD vlog
Watch the video

* Lyme disease tests are often misleading
* Lyme symptoms can mimic hundreds of other conditions
* Many Lyme patients do not receive a correct diagnosis until the Lyme bacteria has had a chance to replicate throughout their body

Does your doctor know how to test for Lyme? Is he or she Lyme aware? ILADS physician Dr. Raphael Stricker told us in an exclusive LDRD interview that the conventional Lyme tests have a "coin-toss sensitivity," meaning that you could get the same results if you just flip a coin.

Do you have to go outside IDSA recommendations to get the answers you need? The woman in this news story considers herself virtually cured of Lyme, after two and a half years of antibiotics therapy.

Are some conventional doctors beginning to understand that these tests, developed over 30 years ago, are outdated and inadequate?

Watch this brief news story on the great Lyme debate. Journalist Kathy Fowler continues the 3-part investigation. Leave your comments here and also send drop her a note at lyme@wjla.com Please share this link with others you know are concerned about Lyme disease symptoms.

ABC covers the Lyme Debate

Lyme Disease Research Database — 2008-08-02T11:51:28-04:00

LDRD Vlog: Lyme in the news

* Is Lyme disease an unrecognized epidemic?
* If left untreated, will it become chronic?
* Can Lyme be treated with long-term antibiotics?

Or do you believe, as IDSA docs do, that the Lyme epidemic is nonexistent? Is chronic Lyme disease all in the patients' head? Are long-term antibiotics dangerous?

These questions simmer at the heart of the great Lyme debate, which is played out every day in decisions made by IDSA doctors on one hand, and ILADS physicians on the other. The IDSA is currently reviewing its treatment guidelines.

Who's correct? Where do you stand? Anyone who has ever been doubted by their Infectious Disease doctor, and all of us whose lives are affected by Lyme will want to watch this three part story.

ABC News covers the Lyme controversy. Take a look. If you appreciate this report, please take a moment to call or email ABC and let them know. Our opinions as viewers matter to them.

Deer and mice survive Lyme

Lyme Disease Research Database — 2008-08-01T20:59:19-04:00

What should we take with a grain? Advice.

For example, I just read this: if your cat spends time outdoors and is acting lethargic, ask your vet to test for Lyme disease.

Um, buddy, I don't know about your cat....

I'm being a little facetious here. Of course it is wise to keep an eye on your pet. Our felines are strictly indoor beasts, so I worry less. However, if you've got a dog or a horse, a ferret or even a lazy outdoors cat, do what you can to protect them. Not only can Goldie or Jake fall sick from Lyme himself, he may also bring ticks, and their Borrelia burgdorferi poison, home to you.

Deer and mice, and many other critters, do not get sick from the Lyme bacteria for some reason. Deer can travel many miles in their lifetime, playing host to any number of vile little ticks, who can often be found around their neck or ears. When an infected tick bites a deer, the deer becomes part of the cycle. It doesn't get ill but it harbors the bacteria, which is then passed on to any uninfected ticks who come along to feed.

We can try, but we can't get rid of ticks. In fact, as the biodiversity of our environment shrinks, the tick population is exploding. And so are the numbers of ticks who are already infected with Borrelia burgdorferi, according to Dr. Eva Sapi, director of Lyme research at UNH, Connecticut. Deer and mice and the ticks they carry don't have as many natural enemies as they once did. Plus they're incredibly adaptive to change. These animals can survive in terrain that many of their predators cannot. Dr. Sapi says that another factor in the higher numbers of infected ticks may be the warmer temperatures in winter. Tick populations that used to die off in freezing temps now winter over.

Reputable Lyme researchers like Dr. Sapi and Dr. Alan MacDonald are working to figure out how to kill Borrelia burgdorferi, and how to cure Lyme. We hope you'll listen to these two skilled scientists, as well as the other Lyme experts who have participated in our Interviews with Experts series. Although the explosion of the tick population is unfortunate, it's also resulting in more media coverage on Lyme disease, and more money for researching Lyme as a serious disease.

We'll continue to scope out the most reliable, professional Lyme specialists available, and record them here for you.

Now, I'm off to wake up my lazy cat. Time for her to earn some kibble and catch this flying bug...

Borrelia Burgdorferi, Lyme bacteria

Lyme Disease Research Database — 2008-08-01T11:44:45-04:00

Borrelia burgdorferi, or Bb, is the notorious bacteria that causes Lyme disease. Bb is just one of three hundred strains of spirochetes worldwide. Other strains of spirochetes cause diseases such as relapsing fever and syphilis. Bb is a spiral-shaped microscopic organism that can scoot around inside the body by rotating in place, like a corkscrew. After its host, the tick, downloads Bb into the bloodstream of a critter or a person, the spirochete can leave the blood stream and invade the tissues and organs.

Although it can cause such frightful, wide-ranging symptoms, to glimpse this tiny pathogen requires a powerful microscope. The Bb spirochete is infinitesimally small. According to the Lyme Disease Foundation in Connecticut, as described in the book, Beating Lyme, it would take fifteen hundred of them laid end to end to equal one inch. "If bacteria were laid side to side, one hundred thousand Lyme bacteria would be required to equal one inch."

Willy Burgdorfer, PhD, was the entomologist who discovered the Lyme microorganism. Scientists honored Dr. Burgdorfer by naming the Lyme spirochete after him. I've just received a copy of Beating Lyme: Understanding and Treating This Complex and Often Misdiagnosed Disease, by Constance Bean with Lesley Ann Fein, MD, MPH. I think I'll pour myself another cup of green tea, settle in and read some more. Chances are you already know some of what's in the book, since Lyme patients tend to read voraciously in order to get educated about symptoms and treatment. We're adding book reviews to the LDRD, so keep an eye out for more news and expert recommendations.

Hear it from Lyme experts

Lyme Disease Research Database — 2008-07-25T23:41:35-04:00

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.

Rick's Lyme success story

Lyme Disease Research Database — 2008-07-23T12:37:36-04:00

Rick, an active sports-lover, was married and starting a family. He was a runner, a cycler and a swimmer. His northern California lifestyle was the type most people can only dream of. "I would water-ski, snow-ski, do anything I pretty much wanted to, looking back. Then I'd hang out with my family, get into the car on the fly, and still have energy on the weekends," he says.

One day he woke up with a frozen shoulder. He was diagnosed with Rheumatoid Arthritis. Although Rick had been tested for Lyme, the tests had come back negative. His RA doctor told him, "Lyme doesn't exist in California. It's probably not that. You just need to consider that you have arthritis. Then he added, right in front of my wife, 'you have to trust the experts to help make you better,'" says Rick. He laughed. "I'm in sales," he explains. "Whenever I hear somebody say 'trust me,' I know I'm going to get f****d."

His RA doctor recommended surgery, which he had. The pain was still unbearable. He was sent from doctor to doctor and no one knew what the problem was. He spent over $25,000 in medical tests without receiving any answers. He was placed on medications that never seemed to help, and only made things worse. At one point, he was popping sixteen Advil per day, eight in the morning and eight at lunch. At night, he self-medicated with wine. The entire time he was sick, he hid his painful symptoms from everyone he worked with, and never complained, even to his wife. But he wasn't getting better and knew he couldn't go on like that.

Finally, at his wife's suggestion, he realized that he had to trust yet one more doctor. He had Googled "Lyme + doctor" and found a clinic in nearby San Francisco. He walked into the office of ILADS physician Dr. Raphael Stricker. When Dr. Stricker told him he had Lyme, he was flooded with intense relief. After only three weeks of treatment, his symptoms began to disappear.

Rick now considers himself to be about 90% better, and he's been able to return to some of the activities he loves. How did having Lyme change his life? In so many ways, he says. Specifically, his empathy for other peoples' hardship and pain. "My family says I'm nicer now," he adds, laughing.

LDRD members, you can listen to Rick tell his entire story in the members area.

Diet, exercise and sleep

Lyme Disease Research Database — 2008-07-22T15:37:04-04:00

Are you like me, a list-maker? Nothing satisfies like crossing something off your to-do list. Here's a list that I wrote for myself, but I haven't crossed anything off yet because I'm still doing them.

3 areas where you can help yourself while healing from Lyme disease:

1. Diet. Eat only healthy, whole organic foods whenever possible. Choose more fresh veggies, more alkaline foods. Read all packaged food and drink labels before you buy. I know that the mere mention of spaghetti and garlic bread makes you salivate, however, reduce (or eliminate) your intake of pasta and carbohydrates. They break down into sugar in your system. Sugar will feed the Lyme bacteria you're trying so hard to kill. Drink plenty of pure water, it will help you detoxify and stay alert. Drink green tea instead of coffee - you have no tolerance for coffee now anyway.

2. Exercise. Yeah, I know. You're too pooped to pop. Your eyelids suddenly gained five pounds each and came slamming down like little garage doors. However, the top Lyme experts recommend daily exercise...to help increase your energy level. That's right! Run, dance, ride a bike. Walk. Jump on your mini-trampoline. Most Lyme patients feel about as strong as melted butter. Build muscles. You'll gain strength, and being strong will also build your confidence. Unless you're in an acute stage, start sweating. Every Lyme patient tells me that regular exercise makes them feel better, even when they felt so wobbly they could barely manage to drag themselves around the block.

3. Sleep. While you're deeply snoozing, each one of your cells is being repaired and replaced with a new healthy cell. You need more rest than you think. Who cares if you need 10, 11, 12 hours of sleep? It takes what it takes. Go to bed by 10 pm. If you can't sleep, meditate. Meditate anyway. It helps you gain perspective. Then first thing upon awakening, take a shower (dry brush first, to help slough off icky toxins excreted during the night). Brew a cup of hot green jasmine tea. Sip while sitting in the morning sun. Stretch. Yawn. Pet your cat. Hug your significant other. Breathe deeply. Give thanks.

Lyme Expert Interview Series.

Waiting room - Lyme story

Lyme Disease Research Database — 2008-07-18T16:37:48-04:00

I was sitting in the crowded, stuffy waiting room, when the guy seated across the aisle started talking.

"I got a rash all over my chest," he said to no one in particular. "They gave me the wrong blood pressure medicine," he continued. "Can you believe that? I can't sleep, it itches so bad." He went on explaining the details of his story and the painful rash, eventually reaching up as if to unbutton his shirt to prove it. I buried my nose in my magazine. The man stopped, looked around to see if anyone was listening. No one was. He leaned toward me. "What's wrong with you?" he said. "You don't look sick."

My long skirt hid the white gauze bandages wrapped around both shins from ankle to knee. Beneath the gauze, the skin on my legs was hamburger from a mysterious rash that had been getting worse over the course of the past eight months. I'd been practically living on an alkaline diet, including lunches of delectable dandelion greens, and downing numerous turmeric capsules, since a holistic doctor had told me that I had eczema. I didn't drink, smoke, and I could count on one hand the times I'd taken antibiotics in my entire lifetime. I wasn't the type to get eczema, and that diagnosis had taken me by surprise. Even so, I religiously followed the doctor's suggestions. Still, I'd had no luck with the nasty rash. When the pain became so vicious that I could no longer even walk, my boyfriend drove me to the ER. Before walking into the waiting room, I'd spent the weekend on IV antibiotics. The ER docs informed us that I had almost died from a staph infection on the verge of going septic.

The man may not have noticed the cane leaning next to my purse. I smiled weakly. "I don't know," I shrugged. He narrowed his eyes, as if I was withholding something he deserved to know. Then he nodded and sat back.

My heart leaped at odd intervals, like a fish jumping in a shallow stream, making it hard to catch a deep breath. The one fan circulating in the room didn't do much to relieve the stuffiness. The dull headache I'd had for a week seemed worse under the florescent lights and the blaring TV high on the wall. An attendant in a green tunic appeared from the hallway and glanced at her clipboard. When she called my name, I stood and steadied myself with the cane and proceeded to walk as well as I could toward the hall. Vertigo gripped me, making me lose my balance. I almost bumped into the knees of the man with the rash. "M.S.," he muttered.

I stepped on the scale in the hall. The attendant adjusted it and recorded my weight. In the doctor's office, she took my blood pressure, handed me a hospital gown and left the room. I sat on the stainless steel table under the glare of the florescent lights, and waited again. So this is what public health care looks like, I thought. What was wrong with me? I had always been healthy, was always the one to choose carrot sticks over potato chips. On top of that, I was happily in love, and even starting a new business. In a million-zillion years, I never dreamed I'd be in this position. But here I was, in a small California coastal town, in the middle of my life, in such a weakened state that I could barely recognize the thoughts swimming through the thick fog that had descended in my brain.

Diagnosing Lyme: Lies & half-truths

Lyme Disease Research Database — 2008-07-17T17:19:35-04:00

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.

NY Times article on Lyme disease

Lyme Disease Research Database — 2008-07-16T15:56:25-04:00

There's a lot to admire about Jane Brody's recent NY Times article on Lyme disease, A Threat in a Grassy Stroll. It will inform some who haven't ever heard of the disease (yes, they're out there), or people who had heard of it but know squat about it, such as my Aunt Louise, who called to offer her condolences after I was diagnosed. ("Unfortunately, nothing can be done, dear. Eating rosemary is supposed to help.") The article may even throw a wrench in the common nonsense that Lyme is "hard to get, and easy to cure," a myth that originally began where? With an article in the NY Times, by Gina Kolata.

Perhaps what I appreciate most about Brody's piece is that alongside the statistics and experts she quotes, she offers her own personal observations. After presenting the simplified version of the IDSA's and ILADS conflicting views on treatment, she says, "Although I cannot state with authority which side is correct, I have encountered enough previously healthy people who have suffered for months or years after initial treatment to suggest that there is often more to this disease than 'official' diagnostic and treatment guidelines suggest." The article's meta-text is twofold. First: Don't believe everything you read. And second: Don't discount your own observations.

My problems with the article are fairly nit-picky, and my bias in support of ILADS makes me frustrated to see this global organization of highly-educated physicians and researchers referred to as "a nonprofit medical group," but okay, they are a nonprofit medical group. I also think it's a little weak on Brody's part to suggest the ISDA simply agreed to revise its Lyme treatment guidelines, since in fact the IDSA faced criminal charges of antitrust if they refused to do so. Furthermore, Eva Sapi, PhD, director of Lyme disease research at UNH, says that even 40% DEET wasn't strong enough to repel ticks when she and her students ventured out on their tick-collecting walks through Fairfield County, CT. She recommends permethrin-saturated clothing instead. And Dr. Sapi says that ticks have been known to transmit bacteria after only one or two hours -- not the 24 hours that Brody says the vile little critters need.

Some of these transgressions, even if they're small, can spread damaging half-truths to the overall message about Lyme. The truth is, it's a serious disease. Easy to get, and hard to cure. The lucky ones are cured following the simplistic guidelines of the IDSA. But the numbers of sick people who don't get better on that protocol tell a different story. In all, I have to say it's exciting to see good reporters talking about Lyme, bringing their own observations into the mix, and not simply mouthing the words of the CDC.

Listen to the experts themselves, and use your own good judgment.

Beating Lyme

Lyme Disease Research Database — 2008-07-15T12:21:54-04:00

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.