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Getting Serious About Lyme Disease

It’s hard not to be a bit worried when you read about the dramatic increase in Lyme disease. This year, new cases are up 350% in New England and 250% in the North Central states. If you’re geographically impaired, click on that link to discover that North Central means us. Surveys taken of physicians show they’re testing patients more frequently than ever, and since positive test results are automatically reported to local health boards, Lyme numbers are relentlessly rising.

It’s called Lyme disease for convenience. Named after Old Lyme, Connecticut, where the disease was first reported in1975, we now know Lyme is just one of several deer tick-transmitted illnesses. The most common illness is caused by an organism called Borrelia burgdorferi, but a second and more dangerous strain, Borrelia miyamotoi, is also on the rise. Importantly, that same tick bite can infect you with bugs you’ve likely never heard of, those with names like Babesia, Erlichia, and Anaplasma.

Here are some important Lyme basics to protect you and your family:

  • Lyme is transmitted only by tick bites. You can’t catch it from another person. However, you can get Lyme from an infected tick brought indoors on a dog or person.
  • Lyme is caused by the childhood (immature) form of black-legged deer ticks, which are quite tiny. If you see one biting you, remove it promptly with tweezers and put it into a jar to show your doctor. Keep in mind that many people with Lyme disease don’t remember being bitten.
  • The well-known bull’s eye rash appears in about 70% of cases, which means no rash in 30%.
  • Acute Lyme disease, which starts appearing one week after the bite, is like a really bad case of the flu: fever, joint pain, muscle aches, severe fatigue, and headache. The blood test for Lyme doesn’t become positive until four weeks into the infection. So if the test is taken too early, the diagnosis will be missed. Therefore, developing a flulike illness after returning from an area where ticks are a possibility–even if you don’t remember a tick bite or didn’t develop a rash–is reason enough for most doctors to start you on antibiotics.
  • Chronic Lyme disease, also called post-treatment Lyme disease syndrome, is an umbrella term for anyone with a wide variety of chronic and seemingly unrelated symptoms (including widespread muscle pain, profound fatigue, and brain fog) who, despite normal test results, shows evidence of having had one or more of the tick-borne illnesses in the past. Currently, doctors are uncertain whether these symptoms are caused by a residual Lyme infection deep in the sufferer’s tissues or by a “hit-and-run” phenomenon in which the infection itself is gone but the body continues to struggle against the damage it caused.
  • Tunnel-vision physicians who haven’t kept current with recent medical developments may consider chronic Lyme controversial or non-existent. If you hear “There’s no such thing as chronic Lyme” from a doctor, ask “What about post-infectious Lyme syndrome?” If he/she looks puzzled or irritable, I suggest finding a new and more knowledgeable doctor.
  • The treatment of chronic Lyme (or post-infectious Lyme syndrome) is twofold. First, an antibiotic regimen to completely clear the body of any residual infection. Second, detoxification plus nutritional and, if needed, psychological therapies to heal the damage from the protracted infection.

Lyme Academy
In response to what’s clearly an epidemic of Lyme and related tick-borne illnesses, WholeHealth Chicago physician Casey Kelley, MD, has taken her interest in Lyme disease and developed it into the mainstay of her practice. She regularly attends postgraduate seminars on the latest developments in the diagnosis and treatment of acute and chronic Lyme and its associated diseases and numerous complications. She’s a member of the International Lyme and Associated Diseases Society, a professional group dedicated to advancing the care of people with Lyme throughout the world.

Due to the complexity of chronic Lyme, Dr. Kelley schedules new Lyme patients for a two-hour initial evaluation, with one-hour follow up visits. Because there are only so many hours in a workday, and because there are so many patients with chronic Lyme, she’s initiating small-group sessions for her established Lyme patients.

Dr Kelley is calling this her Lyme Academy.

Lyme Academy consists of four weekly sessions, each 1 ½ to 2 hours long, during which patients learn different strategies for treatment (medications, natural/alternative therapies) and lifestyle changes to maximize prompt recovery. Because everyone at Lyme Academy is in the same boat, there’s an opportunity to exchange information and tactics for thriving despite having this chronic illness.

In health insurance lingo, these evening sessions are classified as “brief physician visits.” They can be billed to your insurance company, the cost to you being your routine co-pay or out-of-network benefit.

You can read Dr. Kelley’s letter to her Lyme patients here.

Personally, I’m not quite sure which is more dangerous these days, a peaceful walk in the Lyme-infested woods or city life, with more than 20 shootings last weekend in Chicago. You need either a bulletproof vest or long sleeves and DEET to survive.

Be well,
David Edelberg, MD

Leave a Comment

  1. Deb S says:

    I have read numerous references that Lyme Disease can indeed be passed person to person, particularly in utero (mother to fetus) and through sexual relations. Perhaps drinking from the same glass or sharing a fork is more the type of transmission you were referring to.

  2. Marla Pruett says:

    I am glad you are finally realizing this is a concern. My daughter came to your office approx. 3 years ago with tons of symptoms, and you never once mentioned lyme disease. So we continued our search for an answer to her failing health. We finally found it and she does have lyme. I can understand all of the docs we saw thru the years (at least 50 docs and some in major Chicago hospitals) not catching that she had this. But I think back to a few of the integrative med docs that we saw and those are the ones that make me the most angry, that they at least didn’t consider she could have lyme. Just wanted to say I’m glad you are finally considering it for patients. It might save them years of searching like we had to do.

  3. Margo says:

    I had outdoor work for a number of years in various places in Lake County IL, including areas loaded with deer ticks. The absolute best tick repellent I found is clothing sprays containing the agent permethrin, which kills ticks on contact. Do NOT apply to bare skin (still need that DEET for that), but spray permethrin-containing product on your clothes the evening before as per instructions on container, hang them up to dry overnight, then put them on the next morning when completely dry. One application worked well for me for 5 – 7 days without having to repeat. I don’t remember ever finding an attached tick when I used this product, but I remember plenty of evenings where I shook out my field clothes that I wore that day and shook off dozens of very much dead ticks. This stuff works.

    One of my summer interns then, who did not believe in tick repellent at the time, and walked the same areas I did, ended up contracting Lyme that summer in the same area we both worked, so I’m positive it was out there.

    I now live in western Pennsylvania where, alas, we have as many if not more deer ticks than I knew of in Northeastern Illinois. Even more unfortunately, right in our front and back yards and flower beds; don’t have to go out into the woods and fields to find them. I think the little buggers are geographically spreading into areas where they were not known before, since they were very uncommon here until about 10 years ago, I’ve been told. Permethrin-spray products for clothes are my best friend here also. You can also use them on your gear camping in tick-infested areas. So, you don’t have to give up those tranquil outings in the woods quite yet.

    Permethrin-based sprays are a serious product, and have thus received some criticism, but as Dr. E. points out, Lyme is a serious disease. I’m not one to depend on “natural” products to prevent this one, since the risks of catching Lyme in deer tick – populated areas is just too great.

  4. Charity says:

    thank you for this information….very valuable. Unfortunately we have not found any provider in our area of NW Florida that is able to treat chronic Lyme disease

  5. Crystal says:

    I too am glad to see this illness finally coming to light and being taken seriously by more in the health industry. I appreciate your willingness to write about this topic, however I find the symptoms of chronic Lyme you have listed, as well as the treatment of it, oversimplified. As someone who has been misdiagnosed for 26 years before finally requesting the igenex test, the damage done and the course to wellness is not even close to the few steps you have listed. I think this underreporting of the debilitating effects of Chronic Lyme, not only perpetuates the lack of understanding of the disease, but continues to harm those of us who suffer from it.

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