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|| A Look at Lyme Disease
| Avoiding Ticks
1.Wear long pants, tuck pant legs into socks and tuck your shirt into your pants when walking in woods, brush or tall grass. Ticks attach to clothing and then walk upward.
2. Wear light-colored clothing, to spot ticks more easily.
3. Inspect yourself, your clothing, companions and pets for ticks after a ramble in fields and woods. Ticks often attach at body folds, behind ears and in the hair. Have a companion check hard-to-see places, or use a mirror. If possible, shower and wash clothes immediately. According to the USDA, drying clothes on high heat for at least an hour will kill ticks; just washing clothes may not.
4. Mow grass or cut brush to reduce tick habitat near your home.
5. Some people recommend using a repellant containing DEET on pants, socks and shoes. If you follow this recommendation, use great care and do not apply these toxic products directly on skin. Ask your veterinarian how to protect pets.
If you find a tick, grasp it as close to your skin as possible, preferably with fine tweezers or a tick spoon, and pull gently but firmly until the tick lets go. Drop the tick into a small bottle of alcohol and label it with the date in case you decide to have it identified. Don’t squeeze the tick or handle it with bare hands. Don’t scorch it with a match to remove it, because the tick may expel infected fluids into the skin.
by Joyce White
Will we let Lyme disease be one more reason to stay inside, to keep to “safe” areas? As the disease has spread in the Northeast, including the lower half of Maine, fear has escalated. So let’s look at the disease, respecting the devastation the chronic form can cause but balancing that against the immense loss if we let fear to keep us from the outdoors – especially the wild places – that nourish body, mind and spirit.
Chris,* a forester who lives, works and plays in the woods of western Maine, never saw a deer tick before the one that bit him in July 2007 but suspects he was exposed in the year or two before symptoms began. After the 2007 bite, he removed the tick and took it to a clinic. A rash surrounded the bite. He was given one oral dose of antibiotic--the accepted treatment, he was told, since he’d been exposed to the tick bite for less than 48 hours. However, joint pain that had begun in April 2007, before the July bite, leads him to believe that he may have been bitten earlier. He had attributed the earlier pain to arthritis, which had plagued him sporadically since age 14, but the joint pain and fatigue increased until, eight weeks after the diagnosed bite, he was in pain most of the time.
Chris, 45, also had had surgery for a spinal disc problem and thought that might have accounted for some of the pain, except that the ibuprofen or aspirin that had helped counter pains in the past did not relieve the present pain.
Chris had been alert to the possibility of Lyme disease and such manifestations as target rashes, flu-type symptoms and night sweats. Lacking these “classics,” he had dismissed his symptoms for months as due to arthritis and age. He also described the disease as so intelligent that it may go into hiding and inactivity for weeks or months – contributing to his delayed request for a diagnosis.
By August 2007, Chris had lost strength and mobility. By November, he had trouble bringing in one stick of wood and cutting vegetables for dinner. He saw Dr. Meursault* and was diagnosed with Lyme disease. His doctor started him on antibiotics, herbs and other supplements. After a six-week course of doxycycline, his symptoms began to reverse, but as symptoms at the original sites diminished, his neck, hands and feet became affected – “almost like the antibiotic was trying to catch up with [the disease] in a race,” he says.
Days after completing the antibiotics, his symptoms began returning along with constant, intense headaches, head pressure and difficulty concentrating. The disease started in one joint and then migrated to another, subsiding in but not vacating the first site – right knee to right hip to right shoulder to right elbow. Eventually pain was everywhere, with the last three sites – neck, back of hands and feet--becoming involved almost simultaneously, with shooting pains. His hands became so crippled he could hardly write or type. Daily fatigue set in. “I would sleep 10 to 12 hours and still need more – very strange for a person used to six hours a night. At this point I was very sick, and sleep was critically needed.”
Chris was stressed by fears about being unable to function at home and work and by soaring medical costs that his insurance company was reimbursing minimally. In early January he went on a more powerful antibiotic, in addition to the complementary medicine, to address cerebral symptoms and continued joint pain and fatigue. While he experienced some relief from the first round of antibiotics, he began feeling truly better by late February, especially because the debilitating headaches had stopped. By mid-March, his strength, mobility and mental functioning were returning to normal, with symptoms subsiding in the same pattern in which they began.
After the second course of antibiotics, Chris continues to take the complementary medicine that Meursault prescribed: allicin (the active ingredient in garlic) and artemisiae, another herb, in capsules. He also takes a probiotic to protect his digestive system from the effects of antibiotics.
After extensive reading, Chris concluded that for people with late stage symptoms such as his, some 80% recover with an integrated approach to healing, while some 50% recover with only conventional antibiotic treatment.
Of the neurological symptoms, Chris says, “My vocabulary would just evaporate. It wasn’t just searching for a word – there would just be a void in the middle of a conversation that would last for five or six seconds. Then it would come back, but it kept happening more and more. It was very scary. After experiencing physical loss, I now feared I was losing my mind. I have always dealt well with stress, but I was not prepared for the fear and anxiety I was experiencing. Treating those symptoms has been important to my recovery.”
He stressed the importance of having a primary care physician like Meursault who is not only competent in treating disease symptoms but is also aware of the psychological and social implications of Lyme and who will be available in emergencies. “Anyone with this disease needs to have a plan in place to address not only the physical but the potential for new stresses, fear and anxiety. You need to involve your family and be sure you have ways to calm your mind.”
When Chris mentioned that a spirochete causes Lyme disease, I recalled that a spirochete also causes syphilis. He confirmed that, saying, “The syphilis spirochete has 30 different ways to fool the body, but the Lyme spirochete has at least 130 different ways to hide, reprogram the immune system or stay alive and on the attack.”
He continues treatment but works every day, even wading through deep snow after work to collect maple sap. Of his experience with Lyme, he says, “I have never been a person that takes great risks. Some may claim that living, playing and working in the forest increases my risk of Lyme disease. However, there are thousands, if not tens of thousands of people afflicted that do not share my outdoor lifestyle and the joy that comes with it. I am recovering. I will be more vigilant, but I am not giving up what is an extraordinary way of life out of fear of what might happen.”
| Pine Oil Yields Tick and Mosquito Repellent
A naturally-occurring compound, isolongifolenone, prepared from pine oil, seems to deter mosquito biting and repels two kinds of ticks, say Agricultural Research Service scientists. A patent was issued on May 27 for the compound, which, in lab tests, deterred the biting of mosquitoes more effectively than the synthetic repellent DEET and repelled two kinds of ticks as effectively as DEET. This repellent can be prepared inexpensively from pine oil in large quantities but has not been commercialized yet. (USDA Agricultural Research Service News Service, Sharon Durham, email@example.com, June 23, 2008, www.ars.usda.gov/is/pr)
Not all deer ticks harbor the Lyme spirochete, a corkscrew-shaped bacterium. It is widely believed that even an infected tick can’t infect a host - human or pet – unless it’s attached for more than 24 hours, but some people with Lyme say they are sure the tick was attached less than 24 hours. To complete its life cycle, the deer (or black-legged) tick, Ixodes scapularis, needs one blood meal for each consecutive stage – larva, nymph and adult. The tiny larvae, active from June through September, are seldom found and become infected with their first blood meal from an infected mouse, chipmunk or other small mammal.
Humans are most at risk for contracting Lyme from the bite of the hard-to-see nymph, which is most active in June and July. Adult ticks can also transmit the disease and are found most frequently in the fall as they search for larger hosts, primarily deer.
Maine has 12 other species of ticks, with the American dog tick, Dermacentor variabilis, found most often on dogs and humans in late spring and early summer. Larger than a deer tick, it is distinguished by its characteristic white markings.
One other, the “woodchuck tick,” Ixodes cookie, cannot be distinguished reliably from the deer tick without a microscope. It is widely distributed in Maine and, though it usually feeds on woodchucks and raccoons, will readily feed on humans and domestic animals.
Commonly, the first symptom of Lyme in humans--an expanding bull’s eye or target-like red rash at the site of the bite – may occur within a few days or several weeks. The rash may be preceded or accompanied by flu-like symptoms (fever, chills, nausea, facial paralysis and/or pain in the muscles and joints). If bitten, watch for such signs and seek medical help immediately if you suspect you’re infected. Early antibiotic treatment is very effective and can prevent later, more serious complications. However, some infected patients don’t develop a rash and many not recall a tick bite.
In the January 14, 2008, Portland Press Herald, Lucie Scholz noted that prompt diagnosis and treatment can result in quick and complete recovery. However, diagnosis is often not clear-cut, and if the disease becomes chronic, people can spend thousands of dollars searching for a diagnosis and treatment. Because the disease can be so disabling for months, loss of work and income takes a huge toll.
Said Scholz: “In a testimony given to Maine senators and the Insurance and Finance Committee in April 2007, the president of the state’s Lyme Disease Association, Patricia Smith, made clear the dire need for full coverage on the treatment of Lyme by health insurance agencies.” Only Rhode Island mandates coverage for long-term antibiotic treatment for Lyme – a frightening situation, since treatment can exceed $2000 a month.
Many in the Southern Maine Lyme Disease Support Group, Scholz said, “are seeking Social Security Disability because they physically cannot work and financially cannot afford to get treatment.” Thus, Lyme has become a social as well as medical issue.
Dee Webster, CHC (Council for Homeopathic Certification), practices homeopathy in Camden and believes the first line of defense is to keep ourselves healthy, our vital force strong. When our immune systems are functioning optimally, disease is less likely to take hold. So avoid known risks, such as cigarette smoke and sugar, and increase health and vitality through exercise, drinking plenty of water and eating fresh, organic produce.
Webster often advises those who think they’ve been bitten to first take a homeopathic preparation called Ledum 30cc, which comes from the Ericaceae plant family. She might add other remedies from this plant family, but she has no set treatment, because everyone who comes for help is treated as a unique individual, and she treats the whole person, not just symptoms.
Homeopathy works well, Webster says, at clearing symptoms. If the disease has become chronic, she works with whatever treatment (such as antibiotics) the person is using. A range of remedies is available to treat Lyme, including borrelia, made from the same vector that causes Lyme. All remedies work to restore harmony and balance in the vital force, the life force, of the individual.
When viruses enter the body, Webster explains, they change DNA. With bacteria, a strong element of fear comes into the body, and fear itself harms the vital force, even without any sign of disease. Quick homeopathic treatment can help keep fear from escalating. When her husband found an engorged tick and had the classic bull’s eye rash, Webster treated him immediately with a homeopathic remedy to strengthen his vital force. He recovered completely with no other treatment.
Herbs, Osteopathy, Acupuncture and Prevention
Rockland acupuncturist Abigail (Abi) Morrison says Lyme ticks are teeming in that Midcoast area. Acupuncture is part of Traditional Chinese Medicine (TCM), she says, and TCM also employs herbs to treat Lyme – some for the poisonous bite of the tick and others for various symptoms that may occur. Treatment is always individualized, she emphasizes.
Morrison herself has experienced the debilitating effects of a course of antibiotics. “I don’t think I’d go that route again. They are so hard on the system overall.” If infected, she says she’d use homeopathy, Chinese herbs and cranial osteopathy (as used by Meursault) or craniosacral therapy as used by massage therapists. Herbs such as garlic and artemisin have been used to treat infections from spirochetes such as malaria and syphilis for eons, she says. Garlic is readily available, is antibacterial and antiviral and crosses the blood-brain barrier.
Morrison says that Stephen Buhner’s book Healing Lyme (2005, Raven Press) lists individual herbs from the Chinese pharmacopeia and their specific uses according to disease presentation. Some for long-term use include Polygonum cuspidatum (Japanese knotweed), Stephania tetrandra (the Chinese herb han fang ji) and teasel root (Dipsacus fullonum). Morrison uses time-tested Chinese formulas that combine herbs to balance and buffer the harsh anti-parasitic and antibiotic properties of the aforementioned individual herbs. For anyone vaguely familiar with Chinese formulas, the Yin Qiao cold formula is appropriate at initial onset of symptoms.
For prevention, Morrison advocates supporting a healthy immune system. Astragalus, a medicinal plant that boosts the immune system, is readily available as a tincture at health food stores. The dried root (which she uses in all soups and stews and, like bay leaf, is removed before eating) is available from local herbalists and some health food stores, and gardeners can grow their own. Another good immune booster, she says, is Codonopsis pilosula, “poor man’s ginseng.” These two should not be used during an active infection but to prevent infection or during recuperation.
The acupuncture treatment she would use immediately after a bite is on a specific area behind the right shoulder as well an ankle point. For later stages of Lyme, she says, treatment depends on the symptoms.
Morrison says that herbs can mitigate the side effects of powerful antibiotics. Acupuncture treats neurological symptoms of chronic Lyme effectively; she suggests weekly treatments while symptoms persist. Acupuncture works with the body’s natural healing ability, helping clear infections and support the body’s systems.
Lyme symptoms come and go, Morrison says, as the spirochete gets encysted and goes “underground.” Tests for the disease are often inconclusive, and much of the current thinking about chronic Lyme is that most full-blown reactions are re-infections. Medicine in general accepts that a person who is run down is more susceptible to any disease.
Acute vs. Chronic
Dr. Meursault, who works from her southern Maine office, says she is not a Lyme specialist but, as with many community physicians, she sees more and more patients with the disease.
Lyme, she says, can present in different ways. People who are infected may have a negative lab test for the disease. According to the literature, Lyme is diagnosed by evaluating the patient’s symptoms and history and by a physical exam – not by a lab test alone. If anyone is bitten by any tick, she suggests sending the tick to a lab.
The medical community is in heated controversy now about diagnosing and treating Lyme, says Meursault. Many people are very sick from the disease and can become worse from the treatment they receive. Patients require close monitoring.
Meursault is Board certified in Neuromusculoskeletal medicine and is trained to use her hands to evaluate and treat the vitality and function of a person’s bones, tissues and organs. She combines osteopathic manual medicine with other natural therapies to help people recover. She rarely uses prescription drugs, but for all acute Lyme cases, she strongly advocates a full course of antibiotics as relatively inexpensive “insurance” against possible symptoms later.
Chronic Lyme, she says, is much more complex, and treatment depends on the patient’s condition. In severe cases, she refers patients to Lyme specialists.
Conventional Treatment for a Severe Case
Ruth,* 61, suffers from Lyme. In May 2007, she was treated with antibiotics for cellulitis, a generalized infection that starts in the skin. She lost a little weight but got better that summer and returned to teaching in September. Then her blood pressure began spiking up and down and she had a major headache for a week. Soon after, she lost her appetite and by October had lost 40 pounds. She began slurring her speech and was very lethargic, experienced changes in vision and hearing, slept excessively and complained of lightheadedness. She took a leave of absence to concentrate on getting healthy.
An Oct. 12 MRI showed no evidence of stroke – suspected due to symptoms – but did show a small lesion on her pituitary gland, which doctors said they would check in six months.
Ruth was diagnosed with Lyme on Oct. 30 and started doxycycline in pill form. By Nov. 15, still declining, she was switched to a stronger IV antibiotic, ceftriaxon. She was admitted to the hospital Nov. 17, extremely dehydrated and poorly nourished, and was given nutrients by IV because she wasn’t eating.
On Thanksgiving night, her temperature soared to 103.5, and her breathing was shallow. She was moved to ICU Nov. 22. She had no reaction to the ice bags around her—neither sweating nor shivering-- indicating that brain swelling had affected her internal thermostat.
On the 23rd, Ruth was given the steroid Decadron to reduce swelling, but the steroid plus the IV nutrients caused dangerously high blood sugar, which required insulin for the next month.
Her two daughters were with her almost all day, every day, from the 23rd to the 28th. The doctor told them, “If your mother survives, not when, we’ll be looking at severe brain damage.” An exam showed major cognitive damage, and Ruth experienced a lot of fear and hallucinations. A lumbar puncture confirmed Lyme disease in the cerebro-spinal fluid.
Ruth left the Brunswick hospital after 19 days. Her daughter Kate says, “You could have a conversation with her but she wasn’t Mom.” She went to New England Rehab for 12 days and then moved in with Kate and her family. She got another diagnosis, neuro borrelosis, perhaps more specific than the earlier one of Lyme encephalitis.
This has been a long, difficult struggle for everyone, with many complications, Kate says. Ruth became allergic to the stronger antibiotics and needed a blood transfusion because the antibiotics had affected her bone marrow. Ruth’s insurance paid the entire hospital bill, $70,000, not including bills for doctors and specialists.
In December, Ruth’s brain function was still weak, she was still very tired and needed a lot of help. During January, she had intensive speech, occupational and physical therapy. By the beginning of February, her insurance allowances for therapy had run out for 2008, so Ruth tries to continue therapies at home.
By mid-March, she felt better and her brain function had returned but she remained incredibly tired. Another MRI showed that her pituitary lesion was actually a hematoma from a hemorrhage caused by Lyme. By April Ruth had lost over 60 pounds and was still losing weight because her pituitary gland wasn’t producing regulating hormones. Her brain function was good, but too much stimulation or noise still overwhelmed her. She needed a lot of rest and more time to accomplish the tasks of daily living. She began taking adrenal hormones after an endocrinologist determined that some of her dizziness and low blood pressure were caused by a seeming failure of her adrenal glands.
Kate says of her mother, “She had been a very independent New Englander, had been alone since 1987. Now she can’t live alone.” They are building an addition to their house for Ruth. The disease damaged her hearing, so now Ruth uses a hearing aid. Ruth looks on the bright side, though: She gets to see her grandsons every day.
Kate generated a “wisdom list” that might help others:
• Become an expert about the disease.
• Be an advocate and speak up – no one else will stand up for loved ones like you do.
• Ask questions.
• Pay attention to the details and nuances of the situation. The smallest detail or behavior may be a clue to finding a cure.
• Always communicate your expectations and concerns to doctors and nurses.
• Keep a sense of humor.
International Lyme and Associated Diseases Society, www.ilads.org
Lyme Disease Association, www.lymediseaseassociation.org
Maine Bureau of Health Lyme Disease Resource Center, www.maine.gov/dhhs/boh/ddc/lyme_disease.htm
Maine Medical Center Research Institute, Vector-borne Disease Laboratory. Free tick ID for Maine residents. Directions for submitting ticks: http://mmcri.org/lyme/submit.html
Mance, Dale, “Tale of the Tick: How Lyme Disease is Expanding Northward,” Northern Woodlands, March 2008, http://northernwoodlands.org/articles/article/tale_of_the_tick_how_lyme_disease_is_expanding_northward/
* At their request, I used the pseudonyms Dr. Meursault, Chris and Ruth. Dee Webster and Abi Morrison are not pseudonyms.
This article is for information only. Please see a health care practitioner if you have serious health problems.
About the author: Joyce White takes more care now when returning from woods rambles to check for ticks. She does not, however, dry clothes on high heat for an hour (per USDA recommendations), preferring to take the chance that line drying in sunshine will suffice.