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sleep and lyme disease

Have Lyme? Have patience.

Treating for post-Lyme or chronic Lyme infection may be highly controversial in the medical industry, but down here in real life it seems quite clear-cut: You have Lyme. You go to a doctor who treats your Lyme infection. You get better. After a time, you stop taking the antibiotics. You go back to work, to caring for your kids, to everyday life. You may or may not change your diet, your lifestyle, your stress levels. And then sometimes, not always, but sometimes years after the fact, the Lyme infection returns. Is further treatment necessary? Sometimes yes, sometimes no. Sometimes the flare-ups continue and increase in intensity, driving you back to the doctor. Chronic or not, the label is not the essential thing. Treating the flare-up, or the return of the symptoms, is.

My mother raised five rambunctious kids. She tells me she often prayed for guidance. Her favorite prayer was: God, grant me patience, and give it to me RIGHT NOW! Patience is certainly a virtue in healing chronic or post-Lyme disease. But cognitively knowing it and embodying patience in everyday life are two different things.

Here in the mountains of NC, we've just received our first snow. Although I welcome the changing seasons, I find myself getting a tad anxious about the coming winter. It's hard to be patient when you have no control. And of course, who has control over the weather? Last winter was no picnic for people with Lyme. The cold weather poses many more challenges to people who struggle to keep their body temperature at an even keel. Plus, skin conditions that are common with Lyme and co-infections are exacerbated by winter weather, little sun exposure, and snug clothing.

Seeking personal inspiration and practical advice about treating Lyme, I looked back through our posts and conversations with healthy post-Lyme survivors. How do these people remain strong? Are they just made of different stuff? Do they worry, like I do, about tiny signs of Lyme's return, a sore that won't go away, a persistent itchiness. The occasional Lymie surge of dizziness that fades almost as quickly as it comes on.

Then I found Darryl Crews' advice about treating Lyme disease, which I want to share with you. I so appreciate his level-headed approach to treatment. Also, not surprised to see 'patience' right there at the top of the list:

1.  PATIENCE, DETERMINATION, WILL POWER, DEDICATION, DISCIPLINE: Your chances of recovery are good if you happen to possess these qualities.

2.  MEDICATION: Treat all known infections thoroughly with specific antibiotics. Treat aggressively until infection load is reduced to a point where the immune system can take over. Consider IV if you have neuro symptoms or fail to respond to orals. Learn to embrace herxes and avoid under treating at all costs.

3.  DETOX: Address die-off daily to decrease toxins and reduce herx intensity. Consider using supps/herbs, sauna, Epsom salt baths, coffee enema, colonics, etc.

4.  SLEEP: There's no such thing as too much. Quality deep sleep is a vital part of healing. Lyme causes fractured sleep. Auto CPAP is my all-natural sleep-aid of choice.
 
5.  SUPPLEMENTS/HERBS: Daily support is required to assist the body with balancing nutrients, detoxifying and boosting your immune system.
 
6.  EXERCISE: Thick blood harbors infections and toxins. Daily exercise will keep the blood flowing. Keep it basic for 10-15 mins twice a day (calisthenics, walk, cycling, swim, stair climbs or yoga.)
 

I especially like #4. My treatment routine includes meditation and deep breathing at night and again in the morning. Sleep is indeed essential, and these little habits help create the space for a good night's sleep.

I've come to accept that my approach to treating Lyme is unique, and if it's working, it's the right thing to do. But those dark clouds outside the window, that nippy breeze lifting leaves off the trees. What Lyme treatment approach can fend off cold weather? I'm still treating with teasel tincture and hoping it will help keep my body warm, as it has been doing for several months now. And come to think of it, it's lunchtime. A nice pot of carrot-ginger soup sounds perfect. Ginger is a warming food.

What is your attitude about winter? How do you stay warm enough and protect your skin? Lyme treatment, especially treating for chronic Lyme disease, is different for for everyone, but there is so much we can learn from each other.
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Darryl Crews' Olympic Gold-style healing tips

Darryl's interviews are among our very favorite stories here at the LDRD. This guy walks his talk. When it comes to beating Lyme, he is as inspiring to me as any Olympic Gold medalist. Please listen to his updated story, if you haven't already heard it.

Some of you asked him to comment a little more about what it takes to get well. Here's what Coach Darryl has to say.

To me, getting well is a compilation of the following things:
 
1.  PATIENCE, DETERMINATION, WILL POWER, DEDICATION, DISCIPLINE: Your chances of recovery are good if you happen to possess these qualities.

2.  MEDICATION: Treat all known infections thoroughly with specific antibiotics. Treat aggressively until infection load is reduced to a point where the immune system can take over. Consider IV if you have neuro symptoms or fail to respond to orals. Learn to embrace herxes and avoid under treating at all costs.

3.  DETOX: Address die-off daily to decrease toxins and reduce herx intensity. Consider using supps/herbs, sauna, Epsom salt baths, coffee enema, colonics, etc.

4.  SLEEP: There's no such thing as too much. Quality deep sleep is a vital part of healing. Lyme causes fractured sleep. Auto CPAP is my all-natural sleep-aid of choice.
 
5.  SUPPLEMENTS/HERBS: Daily support is required to assist the body with balancing nutrients, detoxifying and boosting your immune system.
 
6.  EXERCISE: Thick blood harbors infections and toxins. Daily exercise will keep the blood flowing. Keep it basic for 10-15 mins twice a day (calisthenics, walk, cycling, swim, stair climbs or yoga.)
 
On another note…Be sure to tune into the Olympics for a bit of Visual Sports Therapy. Olympic athletes have overcome so much to get where they are and their stories are very motivating and inspiring. Beating Lyme requires the same drive.
 
Thanks for the kind wishes…all the best and full recoveries to everyone!

Darryl


Please also note: For further info about Darryl: WrongDiagnosis.com: Read about Darryl's misdiagnosis

And in addition, here's where Darryl goes for VO2 Exercise testing on his bike: Useful info throughout site.
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3 keys to better sleep

When was the last time you got a really good night of deep sleep? Sleep is a soothing tonic for anyone suffering with Lyme symptoms, yet peaceful snoozing can be elusive when you're in pain.

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.
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Diet, exercise and sleep

Are you like me, a list-maker? Nothing satisfies like crossing something off your to-do list. Here's a list that I wrote for myself, but I haven't crossed anything off yet because I'm still doing them.

3 areas where you can help yourself while healing from Lyme disease:

1. Diet. Eat only healthy, whole organic foods whenever possible. Choose more fresh veggies, more alkaline foods. Read all packaged food and drink labels before you buy. I know that the mere mention of spaghetti and garlic bread makes you salivate, however, reduce (or eliminate) your intake of pasta and carbohydrates. They break down into sugar in your system. Sugar will feed the Lyme bacteria you're trying so hard to kill. Drink plenty of pure water, it will help you detoxify and stay alert. Drink green tea instead of coffee - you have no tolerance for coffee now anyway.

2. Exercise. Yeah, I know. You're too pooped to pop. Your eyelids suddenly gained five pounds each and came slamming down like little garage doors. However, the top Lyme experts recommend daily exercise...to help increase your energy level. That's right! Run, dance, ride a bike. Walk. Jump on your mini-trampoline. Most Lyme patients feel about as strong as melted butter. Build muscles. You'll gain strength, and being strong will also build your confidence. Unless you're in an acute stage, start sweating. Every Lyme patient tells me that regular exercise makes them feel better, even when they felt so wobbly they could barely manage to drag themselves around the block.

3. Sleep. While you're deeply snoozing, each one of your cells is being repaired and replaced with a new healthy cell. You need more rest than you think. Who cares if you need 10, 11, 12 hours of sleep? It takes what it takes. Go to bed by 10 pm. If you can't sleep, meditate. Meditate anyway. It helps you gain perspective. Then first thing upon awakening, take a shower (dry brush first, to help slough off icky toxins excreted during the night). Brew a cup of hot green jasmine tea. Sip while sitting in the morning sun. Stretch. Yawn. Pet your cat. Hug your significant other. Breathe deeply. Give thanks.

Lyme Expert Interview Series.
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lyme disease and fatigue

Do you get enough sleep? Or are you like so many people, getting by on just a few hours of shut-eye and rushing to begin your daily activities directly after the alarm goes off. In a sleep-deprived culture, surrounded by colleagues and friends who are running on coffee and bagels, it can be hard to tell when your level of fatigue is simply status quo, or if it's crossed the line to become a genuine symptom of Lyme. The garden-variety droop that comes with a busy life and a few nights of deprivation is generally a temporary problem. You can catch up and revitalize your adrenal glands with a couple of deep-sleep nights and a daytime nap or two.

On the other hand, bone-crushing fatigue, the kind that is symptomatic of Lyme, is hard to ignore. Your activities are limited because you just don't have the energy. You go to work, come home, fall asleep on the couch while waiting for dinner to cook itself. You go to bed early and try to sleep in till the last minute, but you don't wake up refreshed. You can't catch up. In fact, even after a good night's rest it can feel as if you hadn't slept a wink. You can't wash your face or tie your shoes without sitting down. In many cases, you may not even be able to hang on to your job, unless you're lucky enough to work from home.

Since that sort of fatigue is associated with a number of illnesses, including chronic fatigue syndrome or CFIDs, fibromyalgia, mononucleosis, and Lyme disease, medical testing is imperative to help you and your doctor ascertain why you are so tired. The tricky nature of the Lyme bug can make it difficult to eliminate Lyme as a possibility, even if you test negative. Your best bet is to find a doctor who is experienced in detecting Lyme disease symptoms, so that your overwhelming fatigue doesn't get ignored and written off as simple exhaustion.
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Getting Enough Sleep? Effects of Sleep on Lyme.

According to sleep researchers, a lot of us aren't getting enough hours in dreamland. If you have Lyme disease you're likely to have weird sleep patterns. Some nights you're out the minute your head hits the pillow – or even before that! Other nights you toss and fidget while the cats and dogs and everyone else in the whole neighborhood snoozes peacefully. We need to get adequate sleep if we expect to heal from this disease. While our bodies sleep, important cellular work gets done. Healing happens. The myriads of smart biological micro-elves that make up our amazingly intelligent bodies tend to the repair work that they cannot do while we're awake. Our bodies need at least 5 hours and usually no more than 8 hours of good solid sleep to make us better.

The time you go to bed is important too. Our bodies follow inner patterns known as circadian rhythms. I've noticed when I stay up past the witching hour – midnight – and sleep until after 9 a.m., I don't feel as rested as when I go to bed by 11 p.m. and wake up around 7. Dr. Christine Horner, who teaches how to use Ayurvedic practices to heal from cancer and other serious diseases, feels that we should go to bed by 10 p.m. and rise after 6 a.m. to maximize the potent healing force of sleep.

If you're a night-owl like me, 10 o'clock sounds really early. But for the sake of healing more quickly, let's make a promise, shall we? Whenever we can, we'll go to bed earlier than usual, lounge like housecats, and read a good book for a little while, then doze off. The world can turn without us. Our elves have work to do. Let's help them do it.
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