Even in the Lyme epicenter of Long Island, NY, in the 70s and 80s, Lyme disease was generally considered a made-up thing. Pain pills were subscribed to people who were suffering. Their struggle with sanity and physical debilitation was sad and frightful for their loved ones to witness, but if you were sick and there was no clear reason for it, you were basically left to fend for yourself. The disease was suspected to be psychosomatic, which meant that you somehow brought it on yourself.
Actor and director Steven Martini talked openly with me about the personal nature of his film, which is largely autobiographical. Sparked from the depths of his first experience with true love, the film turns on his character's recognition that life unfolds in tenuous, often dangerous ways. His girlfriend's father is inflicted with this mysterious illness, and the young man is confronted with complexities he is barely prepared to comprehend.
Listen to my conversation with Steven Martini about his latest film, Lymelife.
3 keys to better sleep:
1 - Therapeutic massage. Gentle, healing touch can help you relax and get a better night's sleep. Massage is helpful in lowering the anxiety which naturally arises when you have Lyme symptoms. Just the simple act of being touched with compassionate intention can be healing in and of itself. Before you make an appointment with a professional massage therapist, talk over your situation with them. Be certain you can communicate your needs clearly. She or he should be made aware of your illness and your threshold for pressure.
The Bowen Technique, developed by Dr JoAnne Whitaker, is similar in principle to acupuncture. It is a type of gentle massage designed to unblock energy and help the body maintain equilibrium so that healing can take place. Many people struggling with Fibromyalgia and CFS/ME report that this technique has accelerated their healing. (Incidentally, Dr Whitaker is one of the experts I interviewed for the LDRD Interviews with Experts series.)
2 - Maintain a regular schedule. Go to bed and rise at the same time every night and day. Even on the weekends. This is a good health-habit to cultivate even for people who aren't sick. Former surgeon Dr Christine Horner, author of Waking the Warrior Goddess: Harnessing the Power of Nature & Natural Medicines to Achieve Extraordinary Health, which received the “Best Book of the Year” for 2005 award from the Independent Book Publishers association in the category of health, medicine and nutrition, strongly believes in the body's innate ability to heal from any disease. Dr Horner recommends going to bed no later than 10 pm and rising at 6 am each day. (Note: LDRD members, please read the transcript of my interview with her, or listen to the audio version.)
Keeping a regular sleeping schedule helps your body to regulate its other autonomic functions, eating and making bowel movements. All of this can lead to more effective healing therapy. In addition, I'm a big fan of afternoon snoozing, and I usually get in about 20 minutes to one hour, daily. I'm convinced that my napping habit saved me during the worst of my illness. However, if you struggle with insomnia, you might get better results at night by limiting your naptime during the day.
3 - Allow yourself time to wind down before bedtime. This is a personal challenge for me. I'm either online with work or friends, or deep in conversation with my favorite person in the world, my partner Evan. I'm also a natural night owl, so if you are too, I'm sure you can relate. It can be tough to find the discipline to slow down at night, especially if you aren't in the thick of the disease and your mind is back to working order.
Cultivating a meditation practice, simply using breathing techniques from your yoga class, or relaxing in bed with an inspiring book can do wonders. Don't exercise for up to three hours before bedtime. Avoid stimulating drinks--especially during the afternoon and evening. No alcohol. Take a warm bath, and listen to soothing music. Let your loved ones know that they can help by gently rubbing your shoulders or neck. Stretching your arms and legs slowly and methodically before you get into bed can signal your body that it's time to drop off into dreamland.
For me, Lyme's gift has been its power to teach. I've often thought that since dealing with this pernicious disease, I've learned more about my own particular healing patterns than I ever wanted to know. I doubt if I would have learned so much about keeping myself healthy if I hadn't gotten so sick in the first place.
Since Lyme has become my teacher, I've gotten really interested in making my own tinctures and teas. If this is something you're into as well, I recommend watching the short videos on Youtube by mountainroseherbs.com. These instructional videos are clear presentations that can help take the mystery out of the process. By making your own herbal concoctions you can save money as well.
And while we're on the subject, please check out this recipe for arthritis massage oils by author and master herbalist Stephen Harrod Buhner. In addition, see herbalist Leslie Tierra's wonderful massage oil recipes here.
The annual 2009 Lyme Disease Professional Conference will be held on October 24 - 25 at the Gaylord National Resort in Washington, DC. The conference is an opportunity for Lyme-educated doctors and scientists to train the next generation of medical professionals interested in helping to improve the quality of care for people with Lyme.
ILADS recognizes that the growing numbers of people suffering with Lyme and other tick-borne related diseases can be helped immensely by educating health care professionals in every field. Last year's San Francisco conference was hugely successful, and this fall's lineup promises to be even better.
ILADS president, Dr Daniel Cameron, writes, "This ILADS conference also provides a forum for researchers to present their results in the emerging topic workshops setting or in the research workshop. Together the conference will provide the basis for the evidence-based treatment of Lyme disease."
Write [email protected] or call 301 263 1080 if you have any questions.
Advanced Topics in Lyme Disease
If you're struggling with Lyme, this no-nonsense PDF will give you a reference and perhaps even a place to start. Among other things, you'll find a list of supplements that may be very helpful, along with a reminder to exercise if at all possible. Gentle strength training is necessary to rebuild your muscles and help restore your energy level. In addition, exercise can raise the core body temperature and oxygenate the blood. The Lyme bacteria may be a tough bug to kill, but two things that can do the job for sure are heat and oxygen.
Dr Burrascano writes:
Despite antibiotic treatments, patients will NOT return to normal unless they exercise! This is because in most cases the chronic Lyme patient is deconditioned. More importantly, a properly executed exercise program becomes part of the treatment, as it can actually go beyond the antibiotics in helping to clear the symptoms and to maintain a remission.
When everyone else reaches for chips & dip, reach into your picnic basket instead for these yummy snacks recommended for people on an anti-inflammatory diet:
Celery and carrot sticks, or radishes with hummus. Raw veggies are better for you at room temperature, and not cold straight from the fridge.
For a delicious protein snack, spread tahini or almond butter on rice crackers.
For breakfast, cook steel cut oatmeal. A generous dollop of coconut oil keeps it from sticking to the pan, and imparts a delicate sweetness to the oats. Try fresh spinach in the morning along with scrambled eggs. Greens are fresh and tasty, and will satisfy without giving you that over-stuffed feeling.
For lunch or dinner, soup and sandwiches are quick and casual.
Rye bread can be a tasty substitute for wheat bread, but read the ingredients to make sure there is no wheat flour. Good sandwich fixings include sliced turkey (or tofurky, my fave), avocado, tomato, ground mustard and goat cheese or feta. Feta is reportedly much easier to digest than cow cheeses. Add fresh chopped greens from your garden, or layer on the sprouts - use mung bean for a delectable crunchiness, clover, or broccoli sprouts.
If you're a soup nut like me, make a delicate butternut squash soup, or a fragrant tomato bisque. Fresh corn soup is also delicious paired with a spinach, beet, walnut and goat cheese salad.
Mexican food is fast and festive. Make fish tostadas, using tilapia or salmon, piled onto corn tortillas, with dark green leafy lettuce, ripe slices of tomato, black beans, fresh salsa and guacamole, if you like.
Note: If you have thoughts of suicide, please call the Lyme Disease Hotline: 1-800-886-LYME (1-800-886-5963)
My husband has Lyme disease, and we have health insurance with Blue cross/Blue shield through my job. My husband has been on IV for the past 3 months & is just starting to show some recovery. Now yesterday, 9/1/09, insurance says it will no longer pay, because this treatment is called "experimental IV". Has anyone else had this problem, if so what did you do? I am at a loss.
I know I have Lyme, I was bit by a tick at age 4, and I am now 40. It has affected my brain, I have no sense of direction, I cannot remember anything anymore. My left arm feels like it has been cut off at my wrist making if difficult because I am left handed. I have boils on my face the size of golf balls, I can't go into public which being in sales isn't possible so I lost my job. The doctor has tested me for everything under the sun and I told him to test for Lyme. He did a IgG/ImG, something like that, and the blood test came back negative, so he said I do not have Lyme. I can't get out of bed. I now am having problems walking because of my left hip. Several years ago I was semi-diagnosed with MS because I had a case of Bell's Palsy. The tick that bit me in Maryland wasn't found for over 2 days. I was severely ill. My insurance has been canceled and I am losing control. I don't know what to do anymore. I have been thinking suicidal thoughts and am very scared. Please if someone could give me some advice on what to do next. I need some guidance in a really bad way.