Chronic Lyme disease is just a name

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

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

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

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

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

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

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

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

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

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

Add spice, reduce inflammation

Do you have an appropriate Lyme disease diet?

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

Help your body reduce damaging inflammation with the following:

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

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

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

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

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

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


Stephanie's Lyme Story

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

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

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

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

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

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

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

Reduce your chance of tick bite

Learn about tick bites.

• Avoid likely tick-infested areas such as wooded, bushy areas or places with high grass and leaf litter - especially from May through the fall, when ticks are most active.

• When in likely tick areas, wear insect repellent with 20 percent DEET or more.

• Light-colored clothing helps you spot ticks more easily. Also, wear long sleeves and pants, tucking your shirt into your pants and you pant legs into your shoes.

• Before going indoors, perform a tick check on yourself.

• If you find any, use a fine-tipped tweezer to remove. Grab the tick close to the skin, and do not twist or jerk.

Source: U.S. Centers for Disease Control and Prevention

MSNBC prints story of Lyme suicide

MSNBC has posted a heartrending story by NBC news producer John Baiata about the suicide of his beloved sister Sue, who could no longer bear the pain she suffered from chronic Lyme Disease. Our thanks goes out to the Baiata family and to MSNBC for sharing this painful story. I urge our readers to drop them an email thanking and supporting them for helping us bring this issue to the greater public.

I know I'm not the only one of us who was moved (to tears) also by the overwhelming number of intense responses to the story. Among them was a statement by Pat Smith, reminding readers that children are at the greatest risk for Lyme, and that a valuable bill in support of Lyme disease research is still mired in political muck. Here is a partial quote of her comment:

"Another Congressman, Christopher Smith (NJ), who introduced the bill, HR 1179, said last year on the floor of the House, regarding Lyme disease, there is a "cover-up.” We echo that 1000 times over. MSNBC, I hope you will put all the power and resources you possess behind exposing that cover-up soon, as children ages 5-9 and 10-14 are at the greatest risk of acquiring Lyme disease, and the prevailing attitude is allowing government agencies to remove children from mothers who are having them treated with ANTIBIOTICS for Lyme disease by LICENSED physicians.

Meanwhile, our heartfelt sympathy goes out to the Baiata family. Many of us have experienced preventable suffering and tragedy due to this disease. However, the tragedy is usually not due to Lyme disease itself but to politics, cover-up, vested interests, and bias, often a much bigger threat than the Borrelia burgdorferi organism causing Lyme disease, which we could overcome if the cover-up were exposed fully in the light of day."

- Quoted from article by John Baiata, All she lost: My sister's battle with Lyme disease, from a comment made by Pat Smith, President, Lyme Disease Association

Salt and chronic Lyme

Are you getting enough salt in your diet? Salt is essential for all animal life (except land plants). Too much or too little can cause havoc in the body. Studies report that as much as 80% of dietary salt comes from packaged and can foods, and from eating out. It's easy to take in an excess of salt by consuming fast foods, as restaurant dishes are often overloaded with salt.

A lack of salt can be just as harmful as too much, as this elementary mineral is necessary for maintaining the balance of bodily fluids, helping transmit nerve signals, keeping muscles functioning properly and creating healthy blood and lymph.

Many chronic Lyme patients don't eat out due to their illness, and most of us go through at least a short period feeling absolutely yucky enough to keep us out of the public and away from restaurants. A lot of us stay away from packaged foods as well, eating fresh veggies and organic foods as much as possible.

If you eat a diet that is deliberately salt-free, how do you know you're getting enough of the stuff?

Be wary of misinformation

Aside from ticks and tick-carrying deer in our front yards there is something else we must be vigilant about: Misinformation.

For example, one piece of advice I've read in a number of places says that you won't get Lyme disease if you pull a tick out of your skin before it's been there for 24 hours. These articles usually do not name their source of information, instead saying, "latest medical research indicates that..."

I wouldn't be so sure. I asked Eva Sapi, Ph.D., who directs the graduate studies in Lyme disease research at the University of New Haven, about this claim. She said there was no evidence to support the "24 hour" rule. She added that personally, she knew field researchers who had contracted Lyme from a tick that had only been embedded for a couple of hours.

Lyme Disease Pictures

I can now stand to look - objectively view a photo of a tick, or glance at pictures of a bad rash on someone's leg or neck. However, the last thing I could stomach when I was very sick with Lyme were Lyme disease pictures.

My universe consisted of my bed and my computer. Both were necessary for survival and healing. I slept. When I was not trying to sleep or in too much pain or too dizzy, I sat at the computer and researched Lyme disease. Can you relate?

A large percentage of the skin on my hands, arms and shins was hamburger. I quickly learned not to search for "Lyme rash" or "bull's-eye rash." I couldn't bear looking at the images on the screen. Way too close for comfort.

Sleep. High-quality food. Antibiotics. Supplements. Physical exercise. Time. Love. Liberal doses of these ingredients have miraculously repaired my body and brain, and now I can look (when I must) at a picture of a tiny tick, even though I still squirm at the sight.

Support while detoxing

With all the talk about Swine Flu, there's an abundance of common sense about how to stay healthy making the rounds on the Internet, such as washing your hands regularly and supporting the immune system. Immune support is as central to keeping the flu bug away as it is in healing from Lyme disease. And one important step in keeping healthy is detoxification. Detox is part of the one-two punch in Lyme management (along with antibiotics) that RN Ginger Savely describes in our experts interview series. But what happens when you try to detox too quickly?

Anyone dealing with Lyme is painfully familiar with stressful "Herxheimer Reactions," which occurs when toxins - Lyme bacteria - in the body die off faster than the organs of elimination can handle. Learning how to manage Herxes is important yet tricky business. Essentially experienced as an increase in symptoms, Herxes can include nausea, headaches, brain fog, vertigo or mood swings, bringing more stress to an already stress-loaded system.

Some experts and patients say the Herx just comes with the territory, that it's unfortunately one of the crummy things that Lyme patients must endure in order to get better. However, others claim that painful Herxes are more likely to occur when the organs of elimination lack sufficient support. For example, Jean Reist, RN, claims that the intensity of a Herx can be reduced and in some cases eliminated altogether. How? By supporting the lymph system, an important part of the immune system and a major player in elimination. The lymph must be maintained in order to carry toxins away from the cells. An act as simple as drinking plenty of water each day and routinely jumping on a mini-trampoline can help move the lymph, and reduce the effects of a Herx.

The organs of elimination include the liver, the bowel, kidneys, skin and lungs. Yes, deep breathing, which is used in meditation and yoga practice, is a way to remove toxins from your lungs, so remember to support your body in healing by taking a deep relaxing breath.