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Lyme literate doctor

Trust your doctor. Or not?

Anyone in the medical profession deserves heartfelt respect. Most of us honor these men and women for serving humanity in the most fundamental way: Caring for the sick. But what do you do when your own doctor, the saint with a compassionate heart, won't listen, and you know something is wrong? This frustrating experience is common among people with Lyme disease.

Many people, doctors included, believe that a bull's eye rash is the definitive Lyme symptom. In fact, up to two-thirds of people infected with Lyme never develop a rash. When I say doctors I mean doctors from all fields. That includes GPs, Infectious Disease specialists, Neurologists, Dermatologists, Hematologists, Cardiologists, you name it.

  • It is a mistake to assume that your family doctor (or your dentist, for that matter) knows anything about Lyme disease or common Lyme co-infections, such as Babesia, Bartonella, or Ehrlichia. They will most likely tell you with some degree of confidence that Lyme is rare, hard to get, easy to cure, or that it simply doesn't exist where you live. This is old thinking, but you may be surprised how many people (doctors too) are not educated about Lyme, yet possess strong opinions about it.

Tick bites can occur without anyone noticing. They do not hurt. You may have never seen a tick on your skin, or you might have been told the ticks in your region don't carry Lyme. You might remember a tick bite, but you never developed the bull's eye rash, and wrote off the other symptoms as a bad flu, a touch of arthritis, or a passing case of tachycardia.

If you are symptomatic, and have been told that you don't have Lyme but you strongly suspect it, have your blood tested through the IGeneX laboratory. Obtain a second, third, or fourth opinion. Most people who are now successfully overcoming Lyme will tell you they saw 10, 20, 30 doctors or more before they found help.

In my own case, several Infectious Disease doctors I consulted with were quickly convincing themselves that I must have multiple sclerosis. Every cell in body and mind knew with absolute certainty that they were wrong. During that period, I had my blood tested at IGeneX, so I knew that they were wrong. These doctors saw the test results with their own eyes and did not trust them. However, I was in no shape to refute them. At the time I was extremely weak, unable to articulate my thoughts, speak clearly, and was essentially wasted from a horrible full-body rash (not the bull's eye, which actually might have been helpful in terms of their diagnoses).

Prior to my IGeneX test, the expensive dermatologist I consulted had prescribed Prednisone, and taking it (I later learned) was possibly the worst thing I could have done. The steroids explosively multiplied the spirochetes and drove them deeper into my body and brain. Finally I found a naturopath who believed my test results and had treated several patients who had Lyme and co-infections. He was my saving grace. He was hard to find, because I entered this illness naively, believing that all doctors knew best. I had no clue that I'd have to fight them for my life.

You may love and trust your family doc. And indeed, he or she may be saintly and have a heart of gold. But it's your life we're talking about. If your intuition is nagging you to get another opinion, listen to that inner voice. Your intuition is a highly sensitive and intelligent guide, designed to nag for purposes such as this.

The good news is there are educated Lyme doctors who can help you. However, you might have to make an effort to find them. In addition to IGeneX, check out these two new tests, the DNA test and the antigen test.
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Find a Lyme doctor near you


Q: What should I do? I've had Lyme disease symptoms, but the time for early treatment has elapsed.

A: Contact a Lyme literate medical doctor near you. Please go to the Lyme Disease Association doctor referrals page.

Once you're on the LDA website, click on the link for "doctor referrals." Register using your email address. Once you've done so, follow the simple directions to find a doctor near you. The process doesn't take long and the directions are easy to follow. If you need a Lyme doctor, I urge you to find one as soon as possible.

You'll be asked whether you'd prefer a doctor who belongs to the International Lyme and Associated Diseases Society (ILADS). Keep in mind that Infectious disease doctors (IDSA) may not have the knowledge it takes to treat Lyme disease, especially when it has gone beyond the early stages. Infectious disease doctors may also lack the experience that ILADS specialists can offer in diagnosing and treating Lyme.

ILADS member and Registered Nurse, Ginger Savely, has diagnosed and treated over one thousand patients with Lyme symptoms. She is confident that with treatment, you can recover from Lyme disease.

Many experts agree that if Lyme is left untreated, or if it goes under-treated, the disease can be debilitating and even cause serious threats to health and well-being.

If you need help, please use the link above to find a doctor who knows how to diagnose and treat Lyme now.

And meantime, please take advantage of the work we've been doing over the past few years, collecting Lyme Success Stories. Listen to the Success Stories here on our website. Many of them are available for free. All we ask is that you sign up for our newsletter in order to hear them. LDRD members, who help make our work here possible, have access to many more stories, and we're adding new ones all the time. These people are so strong and enthusiastic, I love listening to them. They hail from all walks of life -- young, not-so-young, men, women and children. They will help you find the inner strength and confidence you need at this point. Some of them have specific information about how they healed from Lyme. They talk about how they found their Lyme doctors, they tell which medicines they took, and some describe their nutritional plans, exercise routines, and more.

When we're sick, we need encouragement. We need to hear from other people who've been down the same road. Nurse Ginger Savely told me, during our interview, that she fully believes that people can get better, when given the right treatment, even if they've suffered with Lyme symptoms for many, many years. She sees it happening every day in her San Francisco clinic.
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Lyme bugs crave sugar

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.
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Marguerite's Lyme story

"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.
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