But I know how it is. When you are sick with Lyme and your symptoms are kicking, exercise may be the very last thing on your mind. But nothing moves the lymph like getting some exercise, especially in fresh air. If the weather is not too vile, and you are physically able, motivate and take a walk. Take the dog, or round up a friend to accompany you. They can help you set up a regular schedule that you won't be so easily persuaded to drop. Swimming and jogging are great exercises for getting the lymph to move, if you can manage. If you can do a dry brush massage, do it. That's also a terrific lymph stimulator. However, use your best judgement, and do not use a dry brush if you have skin eruptions or any sort of rash.
Lymph massage through breathing
Going for a massage could be heaven, but if it isn't an option, you can treat yourself to a really effective self-massage in this simple way. Deep, rhythmic breathing is like giving yourself a massage from the inside. When you breathe out, contract your lower-abdomen muscles, and on the in breath, keep them contracted but allow your ribcage to expand. Sit up straight, imagine a string pulling gently up from your spine through the top of your head. Imagine the other end of the string pulling gently down from your tailbone. You needn't get fancy with your imagery to get into a really relaxing frame of mind. The breath is capable of doing all of that naturally. Of course, you can get through the day without scarcely taking a deep breath. But why do that, when it can be so helpful in our healing process? We just have to remember to direct our awareness in using it.
When we eat fresh fruits and vegetables and add fresh herbs to our daily meals, we take their vitality into our bodies for healing. Dr. Wolf Storl’s work is centered in his conviction that all plants, and especially wild plants that haven't been cultivated, are bursting with vital energy from the sun. In his 2010 book, Healing Lyme Disease Naturally, he lists several herbs that strengthen the capillary vessels, regulate the blood pressure, alleviate arterial sclerosis, improve the lymph functions and support the immune system by stimulating the thymus (Storl, 2010). Always check with your doctor(s) before taking any herb. Herbs, just like pharmaceutical medicines, can have side effects.
Storl, Wolf D. (2010). Healing Lyme disease naturally: History, analysis, and treatments. Berkeley: North Atlantic Books.
A good Lyme-literate doctor will suggest you supplement your treatment with a good diet. This is especially true for those of us with chronic Lyme symptoms. But when it comes to food, a lot of us do not like to change things up – creatures of habit, unite! However, change may be easier if you understand why it's necessary.
Sometimes it has to hit us below the belt, in the area of the wallet. So think of it this way. The money spent on medicines, herbal supplements, doctor's appointments, and health insurance may be going to waste, if we neglect our diet. The food we eat is also medicine. It will either help build vibrant immune cells, creating strength and energy, or it will bring the body down. Go to your local market and cast your eye over the organic produce aisles. Doesn't it make you feel better, just looking at the brilliant colors and the variety?
Our bodies are nothing short of miraculous. I wish that didn't sound trite, because I truly believe it. Even aging bodies can learn new tricks! Don't be fooled into thinking you can't make some small change, because you have the power to control what goes into your mouth every day. Exercise and a diet of scrumptious, fresh organic foods can speed the healing process of chronic disease, and slow down the aging process. A better diet also contributes to better sleep, which every Lyme patient needs.
Success Stories – Chicken soup for the soul
As the editor of this blog, I often hear amazing stories about someone who turned around a dire situation. The stories contain different elements but they're all about someone who kicked chronic disease.
The other day a woman I train with said that her dad was celebrating his 79th birthday. None of his family had dreamed of that possibility, because his brother and his nephew had died young. The doctors had informed them of the risk, because diabetes “ran in the family.” But her dad, at age 40, had experienced a scare: His beloved brother's early death. Shortly after that terrible wake-up call, he started exercising. He started out walking, then jogging, then began running long distances. Eventually he began working out vigorously every day of the week, running marathons, and pushing the limit of what his doctors said was possible. He also changed his diet, adding veggies and fresh fruit daily, cutting down on red meat, and eliminating sugary treats.
Chicken Soup with Lyme
I also hear stories – many stories – about people with Lyme. Some (more than you might think), are living healthy, post-Lyme lives. I've shared a lot of these on our “Success Stories” audio interviews here on this site. My purpose for sharing is because you are very important to me. I feel like Lyme patients are all part of one big family. We've been through the ringer! I want you to know for certain that healing from Lyme is possible. You know how hard it is to endure the symptoms. I don't need to remind you of that. What I want to make sure you know is that it is entirely possible to remove more of the obstacles to healing. Your body, our bodies, want to heal. And they are completely capable of it. We just need to give them what they need, and take away the roadblocks so they can make progress.
All these stories share a common thread. Someone in a bad way changed their life, simply by making better every-day decisions. And so they changed the outcome of their story.
On this winter solstice, chill winds and snow swirl through the giant bamboo forest
just outside our windows.
Since last Friday morning, we’ve shed a lot of tears.
Our broken hearts can heal but it will take time. In my own reflections over the course of the past week, I’ve recommitted to get stronger and healthier in 2013, in mind, body and spirit.
That’s my New Year’s wish for you, too.
-- All my best, Suzanne
Holiday gatherings usually center around sharing a meal together. You might be anticipating some changes in your dishes of choice this year. Where is the list of “should” or “shouldn’t eat” foods? And, the most important question of course: is chocolate on the list?
Food choice is so personal. Is there a good “Lyme diet” to follow? Take a peek at this food pyramid shared by Dr. Andrew Weil (and not just because chocolate is on the list!)
We hear a lot about how a particular food is good for us, such as salmon or flaxseed for the omega oils, and avocado for its ‘good’ fat. But how big a portion is advised, and why it is good are something you might not yet know. That’s why I like this simple chart. It tells you the how-much and the why.
An anti-inflammatory diet is beneficial for anyone suffering from Lyme, an inflammatory illness. Chances are, your doctor and your medical advisors are not well-informed about the way your diet affects you, so it’s worth looking into.
Most of us with Lyme have specific needs at mealtime. Communicate your wishes to your family. If you are the main chef and bottle washer at your house, encourage and allow others to help out in the kitchen. Let them do the shopping and the cleanup.
Aside from knitting irresistible toys for the adorable little ones, my preference during the holidays is to renew, reconnect and reflect. Since Lyme, I pay more attention to my breath, I take more time to write and walk. Give yourself permission to enjoy whatever activities you find regenerative. If it expands your spirit, feels loving and healthy, it’s a worthy pursuit. Healing comes from such wholeness.
A word about frenzy, which is so often the tone around this time of the year. It’s defined medically as temporary madness, “a state of violent mental agitation.” Its synonyms include fury and rage. Let’s focus on the symbols of the season, on faith and on relationships that matter. Or have you succumbed to old habits, struggling through city streets and stores clogged with impatient shoppers. It’s always our choice.
Faced with a few days off, it’s tempting to try to get as much done as humanly possible with the extra down-time. But your body and mind needs slowing-down-time. Don’t try to rush the healing process with your willpower.
If you’re in pain and the weight of the world feels like it’s on your tired shoulders, please be generous with yourself and rest. The world’s wisdom traditions teach that this dark season naturally facilitates surrender. So allow the healing process to move through you, and perhaps move you to a new place in your journey. With grace, you will be yourself again in time.
I wish you a peaceful and joyful holiday -- with an oz of 70% chocolate!
Has that ever happened to you? Someone you’d never suspect turns out to be a recovered Lymie? I was really taken by surprise, because Stephanie is someone I’ve always known was brilliant. She’s loquacious, funny, sensitive and inquisitive. She’s verbal. We’re both English teachers, and that tells you something about our common love of language. (And our common fear of and frustration with brain-fog!) But she’s also a Fulbright Scholar (which I’m not), she worked for a megalithic TV corporation for many years, and she is a bona fide cinematographer. And she’s been honored by government officials for her humanitarian efforts that led to actual laws being changed. And...she’s had Lyme disease.
Okay, enough of my brag about her. Suffice it to say, we’ve all known people who seem to have a lighted star over their heads wherever they wander in this world. She’s just one of those. But at dinner, as she lowered herself into our Japanese-style seating (yes, we eat sitting on the floor), I heard her say that she’s been having some stiffness ever since Lyme disease.
My ears perked up. I couldn’t believe it. She’s just returned from a year in China, and is on her way to Micronesia for two years. I leave my house to go to the grocery store every few days. I have what’s called a low threshold of adventure, which is I believe, the medical term for it. Stephanie’s got just the opposite. Little wonder she can tell a story and make you laugh, get hired on a dime and make a friend in the time it takes to wash your hands. She’s got no fear of the world. Did I mention she lives on a houseboat when she’s Stateside?
Her neck, however, was stiff the night she had dinner with us. She and I had a lot to say to each other about Lyme, but we talked about everything else under the sun that night too, and that’s another sign that we both live post-Lyme lives, isn’t it? But she was very interested in hearing about sugar’s effects on Lyme, and we traded notes on our workout routines. Turns out she’d been putting her sore back and neck down to age. But she found out that my yoga routine is keeping me limber and strong, and I have no soreness to speak of (not Lyme-related anymore, that is). She vowed to get better about regular exercise. I hope she keeps her promise to herself, because I know how much it helps me. We talked about our love for learning new skills and languages, and how that helps our mental muscles stay toned and flexible. And she has set the bar high for me. I am seriously going to consider traveling abroad soon. Letting go of the fear, and the image of myself as a recovering sick person is the one last stand to truly embracing wellness.
Do you have a remarkable friend who has walked a path you’d like to walk? Would you do it if you didn’t fear Lyme disease, or its effect on you? Please tell me about it. I’d love to hear your perspective.
For further reading about the four fundamental dimensions of healing from Lyme, click here.
Very little is known about CD, however but there is a growing awareness, which is why, over the past five years, we are seeing more gluten-free (GF) choices in the grocery stores. To a person with Lyme disease, this scenario, an autoimmune disease with vast, murky symptoms and not a lot of clarity about treatment, probably seems vaguely familiar.
The leading US specialist in CD, Peter Green, MD at Columbia University, recommends that people suspected of having gluten-sensitivities not quit eating foods containing gluten until they are properly tested and diagnosed. This is because withdrawing from foods with gluten will change the test results. However, as there is currently no other treatment available for people with CD or non-Celiac gluten sensitivity, the treatment consists of eliminating all sources of gluten-containing foods from the diet.
But there's a catch-22 in that logic. Do you feel better when you don't eat foods containing gluten? I do, I don't feel as puffy, which I guess is the way inflammation in the gut feels. Would you go back to including gluten in your diet just so your intestinal biopsy proves that you have a definite sensitivity to it? I'm not sure I'd do that. And if you did go back to eating it, and you were diagnosed with CD, then you'd be put on a treatment that consists of not eating gluten.
Evidently, the US is behind the UK and Italy and other countries in its knowledge of CD. According to a 2011 interview with Dr. Green published on Delight Gluten Free Magazine online, in England, people with CD are part of a program that enables them to have gluten-free foods delivered to their home. This “food as medicine” is also a tax write-off because it is part of a subscribed treatment for their illness.
I write about nutrition and a healthy, whole foods, Lyme disease diet, and whenever I pay for my fresh organic groceries I often think how nice it would be if I could write off a meaty percentage of that food, since it is a central element of my ongoing treatment.
What do you think? Let's talk about it.
For women reaching menopause, Lyme symptoms can blend in really irritating ways with the Seven Menopause dwarves, as Suzanne Somers calls them: Itchy, Bitchy, Sweaty, Bloaty, Sleepy, Forgetful, and Psycho, aka All-Dried-Up.
Somers promotes gluten-free foods and hormones to help manage the Seven dwarves. I write a fair amount about diet and good nutrition because I've seen firsthand that a diet full of nutrients and whole fresh foods is crucial to the healing process. Adding fresh vegetables and a modicum of fruit, loads of greens, lean proteins, and entirely cutting out sugar has benefited my healing process more than I can say – even though the internal medicine doctor I saw while in an acute stage of Lyme declared that my “diet had nothing to do with it.”
I'm here to tell you that it does. It's not the only thing, but it's one of the things that we can control, change, modify and design to promote our own healing.
Bear in mind the distinction between eliminating illness and living a life of wellness. That's an important difference, because you aren't always going to be sick, and you aren't always going to be healing from Lyme. Some day, I hope very soon, there will come a moment when you will feel better. You'll feel like your old self again! The moment might slip away, but it will come back. And then the intervals between the good moments and the bad moments get smaller. You find yourself re-engaging with life again. You still relate to people suffering with Lyme, yet don't define yourself as being sick anymore. There'll come a time when the brain-fog will burn off for good, like a hazy morning sky before a clear day.
This recognition that you are well again might happen in one moment. Or it may happen, as it does for a lot of us, over a long period of time. I think of it as emerging out of the ocean after swimming a great distance from some other land mass. You aren't lifted out, you don't suddenly jump out, but instead you walk slow-mo through the water towards the beach.
You'll be a new person, the same essential you but changed forever, because that's just what happens to those of us who get swept away on this journey of illness and healing. And when you emerge and know that you have, that's the moment to set a course for a life lived with vibrant presence, vigorously dedicated to wellness.
There is no panacea for Lyme, but then, there are no panaceas for anything! Even your Lyme doctor can't perform miracles. We can't fix everything with a Lyme diet. Personally, I found that sticking with a diet of whole, organic, fresh foods and eliminating sugar and now gluten, has given me a real boost toward the shore. Stick with it. Never give up!
All of us want to get better, and so many people with Lyme are good people, deeply invested in helping each other. With that in mind, I want to suggest that we follow these two rules:
- First, heal well.
- Second, through diet, physical exercise, attitude, work, relationships and in your spiritual or religious practice: live a life dedicated to wellness.
At first he brushed it off as a bad flu and continued on his daily routines. He did not have a bull’s eye rash. But then his symptoms took a turn for the worse, the muscle twitches increased and he felt he was losing control. He decided it was time to get tested for Lyme. The result was negative. However, test results were positive for an infection that typically accompanies Lyme: Ehrlichia. Antibiotic treatment began but he continued to feel worse, even taking Doxycycline. At that point, he took the initiative to search out a doctor in Minnesota who specialized in Lyme and could really help him.
Jerry found Dr. Karen Vrchota. She sent his blood to be tested by IGenEx, in Palo Alto, California. In addition to three co-infections, Ehrlichia, Bartonella and Babesia, Jerry was positively diagnosed with Lyme. She recommended further treatment including some of Dr. Cowden’s protocol, such as Samento, Burbur and Parsley tinctures.
As Jerry worked with Dr. Vrchota, he branched out to discover many more proactive methods that would allow him to feel in charge of his own therapy. He realized that truly healing from Lyme disease demanded coming at it from every angle, not simply by taking antibiotics and herbal medicines. At the suggestion of Dr. Cowden, he focused on getting rid of the mercury, aluminum and other heavy metal poisons and toxins in his system. He adopted a new approach to exercise and nutrition. Following the advice of Dr. Burrascano, he began cardio as well as strength training exercises. He talks about the difference he began to feel as he focused on heating up the blood and getting it flowing. Spirochetes hate heat and cannot survive it. Therefore, physical exercise is super important to include in a Lyme disease protocol.
In his search for wellness, he has been seeking advice from experts in many fields, psychological as well as physical, spiritual as well as emotional. He feels confident that he’s now about 95% healed, and is eager to reach out and help others facing similar health challenges.
Over the past couple years, Lyme disease has become one of Jerry’s greatest teachers. He has rediscovered the simple joys -- tossing a ball with his kids, slowing down each day to practice mindfulness meditation and noticing life’s small blessings.
Hearing him tell his story, it’s easy to see that this once-Type-A person has a loving and generous heart. You can sense that something in his nature has softened and profoundly changed and evolved. He talked movingly about how he is now deeply committed to “giving something back,” and I’m really pleased to be able to share our recent conversation in our Lyme Success Stories series. You’ll hear him discuss the challenges he faced in getting properly diagnosed, his treatments, protocols, exercise routines, and the doctors and other experts who are guiding him as he turns his life around.
Jerry has redefined the meaning of success in his life and feels endless gratitude for the things we tend to take too easily for granted. By approaching Lyme disease comprehensively and from every angle, his healing is happening on many levels of his life. Yours can too.
For additional information on healing Lyme from every angle, see 100 Perspectives
Listen to the Interview
The thymus is located in the chest, in front of the heart. It’s part of the adaptive immune system. You may recall as a kid seeing Tarzan pounding his chest, right before leaping onto a vine and sailing across the treetops. The thymus, which decreases in size after puberty, is situated right there in the chest behind the sternum. The King of the Jungle and his gorilla pals pounded their chests as a show of strength and dominance. Some physical therapists say that thumping it gently will help stimulate it.
Eating Splenda shrinks it. Why is this bad? Because T-cells develop in, and are educated by, the thymus. Splenda can damage the T-cells, according to Jean Reist, a nurse who has treated over a thousand people diagnosed with Lyme disease. When treating Lyme, the last thing you want to do is cause damage to your adaptive immune system.
Lyme-literate experts advise us to avoid sugar. So what do you replace it with? Honey and agave sweeteners may contain nutritional goodness, but they are processed by our bodies the same way that sugar is. Stay away from Splenda (sucralose), which contains chlorine.
I’m happy to see that some nutritionists recommend stevia nowadays. I switched to stevia tincture when I was first diagnosed with late-disseminated Lyme symtpoms. Stevia tincture is made from the stevia herb, which has small leaves and looks like any other hillside weed. My mom, who has an amazing green thumb, grows it in a container on her deck. If you ever get the opportunity, bite into a stevia leaf. It’s unbelievably sweet, and it’s pure plant. No sugar. Nothing fake. This herb is native to South America, used for centuries to sweeten tea and make mate, and although popular for decades in Japan and elsewhere, it’s now in widespread use in the US, following approval from the FDA. Still, if you buy stevia at the grocery store, read the label. Some brands actually add sugar! I use KAL Stevia tincture, an alcohol-free, zero-calorie blend.
How far can diet and exercise go toward treating Lyme? There is no question that antibiotics are well-advised and necessary towards a Lyme disease treatment. But if there are lingering symptoms or problems, diet and exercise seem to be critically important. In my experience, healthy shifts in diet and making the effort to maintain a regular workout practice have made a huge, positive difference. I know that without having changed my habits I wouldn’t be in very good shape at all.
Weird as it sounds, I count having had Lyme disease among the biggest blessings in my life. Perhaps it is the biggest. I know you’ll understand what I’m saying. Although I’d never have voluntarily dived into the wretched state that it put me in, if I hadn’t been dragged under by Lyme, I strongly doubt that I would now be making the daily efforts I now make to live a radiantly healthy life, in body, mind & spirit! As you know, healthy living is not something that happens by accident. It takes mindfulness. I eat live foods, and drink freshly-made juices, mostly containing fresh organic veggies and high-fiber, high-protein foods such as beans and quinoa, to improve my skin and elevate my energy. I hit the gym at least three times a week, mainly doing interval workouts and strength training with weights. Exercising helps oxygenate my blood, strengthen my muscles and improve my endurance. I also think positively, which is not too difficult considering that post-Lyme, I feel blessed to be alive at all!
I also love to learn from other people. My mom is in her 80s and still healthy, beautiful and active, taking dance and Tai Chi classes and enjoying spending time with her friends and family. She never bought us much junk food or soda pop as kids, and she didn’t drink alcohol or smoke cigarettes. Instead, she shared her excitement over vibrant fresh greens and delicious fruits straight from the garden or the local farmer’s markets. When we sat down to dinner, she and my siblings and I often lingered afterward just talking and enjoying each other’s company. Recently I asked about her secret to living a long, healthy life. She thought about it for a minute and said, “I don’t poison my body and I think positively!” I love my mom. What a wonderful role model.
Sadly, I have friends ten years younger than I who suffer with RA and other autoimmune deficiencies, who refuse to examine their dietary habits and sedentary lifestyles. They depend on the medical professionals to help heal them with medicines.
If you decide to take an active role in your own healing, begin by recognizing that shifting your diet and starting an exercise practice takes determination and regular effort. Realize that your Lyme doctor may be an excellent diagnostician, and she may have prescribed antibiotics and been of great help to you in the early stages, but she may not know bupkes about nutrition, or how some foods or alternatives such as Splenda may contribute to, or denigrate, your progress.
Medical doctors don’t study nutrition in medical school, not with any depth. While it would be nice to think that they could be our role models for healthy living all-around, that isn’t in the curriculum. So unless your doctor is also educated in and interested in the way diet affects healing, it’s possible that you know much more about it than he does. There are indications that this is changing, and that more people who become doctors are also interested in how the whole healing process works. This is a wonderful trend, and I have a feeling it will continue. One of my friends says her doctor expects his patients to have read up on their condition online, and he encourages them to dialog with him about what they learn there.
Does your medical doctor know about the role of nutrition and exercise in treating Lyme? Do you talk with your nurse practitioner or doctor about diet and exercise as you heal from Lyme disease? Who are your role models for healthy living? Drop a line or leave a comment. I love hearing from you!
Now go on, nobody’s looking. Thump your thymus!
In my life BL (before Lyme,) I had embarked on dietary healing cleanses such as juice fasts quite a few times. Bear in mind, I grew up in California and one of my first jobs after high school was at a health food store, so my behavior wasn’t out of sync. But health food stores were new and not quite popular yet. Even in SoCal in the 70s - 80s you might be dubbed a little weird if you shopped in one, especially wearing your Birkenstocks and tye-died t-shirts.
Pre-internet days now seem like ancient history, but these stores always had an intriguing books section which I gravitated to. I sipped many a smoothie while reading about the virtues of sprouts, organic veggies, the healing power of vegetable juices, herbal formulas and even (ahem), enemas. Since learning about the function and importance of the colon, it’s always made sense to me that an occasional cleansing could be very helpful. Keep things moving on out. Now of course the internet is a rich source of research on, and recipes for such cleansings, including full-color images of the dreadful gunk that people have dredged from their lowlands.
Having been through Lyme’s crucible, I would never suggest that someone still healing from Lyme Disease try a colon cleanse. I haven’t yet asked, but I doubt that many Lyme doctors would advise it, based on my own experience with frequent and painful Herxheimer reactions and the Lyme symptoms themselves.
However, I’m currently on Day 6 of experimenting with an herbal intestinal cleanse. I decided to go for it because I’ve been feeling so incredibly normal for more than a year now. This is my first time since healing from LD and going through many years of both traditional and alternative Lyme Disease treatment. I’ve got a good feeling about it. Over the holidays, I did experience a few skin-breakouts and some sort of shingle pain that I attribute to chronic Lyme symptoms. It seems to happen every winter as the weather grows chilly & dry and I spend more time indoors with the heater on. It’s too early to come to any real conclusions, but since Day 1 I’ve noticed a distinct reduction in swelling in my tummy, and my skin breakouts have almost completely faded. The skin isn’t itchy or red as it has been for over a month. I haven’t had any negative effects from the herbs, no Herxing (thank goodness!), no brain-fog, no skin rash and no fatigue. In fact I’m super energized and I’m off to a dance class as soon as I finish this post!
Drinking more water (one doctor mentions that we should all be drinking nearly a gallon per day) is so important. And you know how I feel about exercise - it’s the miracle cure when you can possibly swing it. But on top of these two things, it seems to be helping me to focus, at least for a week or two, on cleansing my colon again. Remember, I’m no doctor and I’m certainly not doling out recommendations here. But I know sometimes it’s helpful to hear someone else’s experience.
I can’t remember where I copied this quote from so apologize for the lack of acknowledgement. But in the spirit of the new year and its power & potential for healing, I want to include it here:
"The future is just the past catching up with us. Today is the preview of tomorrow's reality. In the future we will say one of two things. ‘I wish I had’ or ‘I'm glad I did,’ but we make that choice today."
If you’ve cleansed lately please tell me what your experience was. I’d love to hear from you, especially if you’ve had Lyme.
Not only our physical health, but our mental health originates in our guts. People dealing with chronic Lyme disease symptoms have good reason to guard both of these states. I’ve been exploring why it’s so important to eat a healthy diet, and that means paying as much attention to what we don’t eat as to what we do. I’ve flirted with a gluten-free diet for months now, but something tells me that it’s time to give it up for good. At least for a month, and see how it goes from there. Want to plunge in and go gluten free for a month with me? Read on and think it over.
First of all, have you ever have a ‘gut feeling’ about something? Most people have. In fact we rely on those feelings to inform us in crucial ways. Our guts can warn us to get out of harm’s way, keep us from getting involved with business deals of a questionable nature, and alert us when a distant loved one needs our help.
When I ignore those feelings, I always wind up thinking I “should have listened to my gut.” You too?
Lately, my gut has been saying to cut out wheat. I’ve cut back on it, but haven’t ever gone without it for long. So I’m going to start tomorrow, as I’ve already blown it this morning with lox and bagels. I feel bloated. This is a disappointment, because I’ve been telling myself that I love lox on an everything bagel with vegan cream cheese, red onion, tomato and capers. However, this morning’s breakfast is still sitting in my gut, calling attention to the fact that it just isn’t getting digested right.
What can we expect to happen when we cut out wheat and gluten from our daily diet? Well, for one thing I expect my mood to lift. It’s fall, and I am in the school business. Every fall I get excited about new schedules, new people, new notebooks, you name it. I love school. But with the newness comes anxiety. And with the anxiety comes a sort of spirit-clenching mental habit of worry. Did this get done? Did that get done? You know what I’m talking about. Some things are under our control, some aren’t. So anxiety is usually generated out of what I cannot control. This stuff makes me moody. So perhaps a gluten-free diet will help me accept the things (and people) that I cannot change.
Another change I can expect from eating no wheat is a loss of puffiness. I have to say, that is something to look forward to. Chronic Lyme symptoms have kept me aware of the importance of taking anti-inflammatory supplements, such as liquid cod liver oil, and turmeric capsules. But still I often feel a little puffy around the waist and in my arms and face. Exercise helps, but the puffiness returns when I eat bread.
The biggest benefit that I can expect is an improvement in my mental clarity. Now that’s really exciting, considering that I deal with college students. When it comes to the information age, you can never quite keep up with the generation below you! They’re intensely savvy with computers and everything that I need to be. So, maybe I’ll be better equipped to keep up. I’m definitely looking forward to that.
If this works as well as I think it may, I might just go another month. Anybody game to try it with me?
Meantime, life goes on. Friends and siblings get jobs, travel, go to grad school, fall in love. They get married, have babies, and not in any particular order. But for the person with Lyme those fundamental pathways, common fruits of life we for granted, may simply not be an option. Lyme has stolen years.
But enough of spilled tears, right? The wisest thing anyone can do is to start where you are. If you’ve had it with chronic lyme disease symptoms, take heart. Many others have been in your shoes. And they’ve gotten through it. Regardless of the time and opportunities missed because of Lyme, there are many people living happy, loving, productive lives again.
Exactly how the stealthy Lyme bacterial complex works is still under scrutiny. Scientists and doctors, some who are also personally infected with Lyme disease, such as Dr. Eva Sapi and veterinarian, Lyme and immunology expert Dr. Scott Taylor, toil to understand and find a cure for Lyme. One thing we know for certain is that Lyme is an inflammatory disease, and chronic inflammation is the root cause of many life threatening conditions, including Lyme.
Cortico-steroids are commonly given to Lyme patients by doctors without any knowledge or clinical experience in diagnosing chronic Lyme disease symptoms. The faulty logic goes something like this: the patient is experiencing distress, inflammation is causing the distress, steroids (usually Prednisone) will reduce the inflammation and thus reduce the patient’s distress. Not! Predinose will supress the patient’s immune system, causing it to tolerate the Borrelia bacteria instead of attacking and killing it. The Lyme infection is almost guaranteed to get worse, not better.
What can be done about chronic inflammation? Are there safe prescription drugs available, and does your LLMD know about them? What about natural alternatives? Aside from fish oil, are there other products we can take to reduce this silent killer? Does physical exercise really help people dealing with chronic inflammation? Or can it hurt? In my next post, we’ll delve into the various ways to treat chronic inflammation.
If you want to know how not to lie to yourself about your diet, try keeping a journal where you chart everything you eat. In one column write down the food you ate, and make a column next to it where you note how it made you feel. This is a very basic way to figure out exactly what you’re eating, not what you tell yourself you’re eating. Some doctors tell me that they have their patients keep a similar type of journal when they’re trying to identify food allergies.
My diet is made up of mainly vegetables, some tuna and wild Alaskan salmon, raw and stir-fried or steamed veggies & curry, some fruit, legumes, and breads or tortillas. Some of the bread I buy is gluten free and I like the pasta made from brown rice, but I am not particularly bothered by digestive issues, and regular bread works for me too. In general, if it’s wholesome food with not too many ingredients that I can’t pronounce or recognize, it works.
My current favorite food is a wrap. I love wraps because instead of bread, you’re using a thin tortilla, and you can pack them with all sorts of veggies and greens. Stir-fry is good for that too. A lot of vegetables taste excellent in a wrap or a stir-fry that aren’t that delectable when eaten raw or steamed. I don’t generally drink alcohol or eat sugar, although I will indulge occasionally in a beer or cookies, but not often. Alcohol and sugar pull the wool over my eyes. Literally. When I drink or pig out on sugary things I get Lymie. It’s awful to experience Lyme brain again. It’s so wonderful and amazing to have a clear head again, why go there?
I know you’ve heard this a million times, but remember to drink enough water! Liquids are needed to assist the lymph system. I drink water or tea all day long. Green, not black. Black makes me jittery. Coffee only as a treat very infrequently. Tea is alkaline, coffee is acidic and drinking it tends to make me feel chilly. Tea doesn’t do that.
Lately I’ve been drinking a lot of tea made from bamboo leaves. The bamboo leaf tea has about 350 mgs of silica per cup, it tastes great and also helps me sleep. This isn’t technically a real tea. It’s a tisane, or an infusion. Bamboo has the highest amount of silica, a basic mineral that our bodies slough off constantly in the form of dead skin cells, hair, and nail trimmings. Silica is the main ingredient in collagen, which is so essential to rebuild as collagen is destroyed by the Lyme bacteria.
Especially as we get older we need to be mindful of getting enough silica to maintain the levels we need for healthy hair, skin, nails and bones. Studies are showing that silica is the body’s delivery system for calcium. So if you have enough silica in your diet, the calcium can be delivered to the organs properly. As an interesting side note, studies are also showing that this tea can pull out the aluminum in the body and brain. Researchers are intrigued by this finding, and it may be quite useful in cases of Alzheimer’s.
Smoothies are a treat and a regular part of my diet. Delicious, fresh smoothies made of rice milk, berries, a banana and green food powder are very satisfying. Sometimes I put in protein powder if I’ve been working out particularly hard.
I’ve made other life style changes. The main one is that now I exercise religiously. I used to just dance and walk for exercise, but I wasn’t doing either with any sort of regularity. If it happened, it happened. Then about two years into my healing, my shoulder started to freeze up. I was so frustrated, because I was working really hard to clear up the nasty neurological, skin and heart problems I was having, and had begun to track some very good progress. Then one day I realized that I couldn’t move my shoulder and it was painful. It was disheartening. My partner suggested that I try some exercises, in particular push-ups. Hated those push-ups at first, but I was determined to fix this without drugs, and I did. It took about two years, but now my shoulder gives me very little trouble and I have full range of movement. That was the beginning of my now-regular exercise phase. I love working out now, but at first it was difficult. I hadn’t realized how out of shape I had gotten from being sick, and from my work life style, which is sitting at a computer all day (can you relate?).
I used an exercise CD at home for about a year before I had the nerve to join the Y and exercise in front of others. Then I decided to join a private gym that had something called a kinesis wall. Essentially, the kinesis wall is an apparatus with several stations that enable the user to get a rigorous, core-strengthening workout. Very much like Pilates. I took a weekly class with a very skilled coach, which got me started off on the right foot. I recommend classes instead of private coaching if you want to save some money. They’re fun, and also you meet other people, great for team spirit and camaraderie.
I’m fortunate in that I work at home. For the past 7 years I’ve been in charge of my own work schedule. That has been extremely helpful. If I’m honestly too tired to work I can take a nap. I can also stay close to the bathroom, which helps when you drink so much water.
My heart goes out to everyone who is suffering with Lyme and has to maintain a job where they have to leave the house every day. This can be a bear of an illness, and that life style can be merciless. If that is your situation, see if you can look into telecommuting, even part of the week. Staggering your work hours so you aren’t dealing with bad traffic patterns, a real stress-inducer, can help a little bit too.
So that’s where I’m at currently. Please tell me if any of this resonates, or helps to hear, or if you have an idea that you think could benefit others healing from Lyme. Do you keep a food journal, or an exercise journal? I’d love to hear about your journey and your results.
He considered me a nuisance, because at each appointment I’d open my notebook and read another question from my list, which he wouldn’t answer. Bless his heart, as we say in the South. He wouldn’t even look me in the eye or talk to me. When he had something to say he addressed my mother instead, who drove me to these appointments and helped me get through them.
A doctor worth her salt who suspects that a Lyme infection is underlying will be the first to tell you that corticosteroids such as Prednisone are contraindicated. That means they are precisely what you do not want to do. The dermatologist who wouldn’t listen to my questions seemed to have no professional curiosity about my skin rash. If he’d looked into it, he might have saved me several terrible months of pain, and perhaps even several years of cognitive disorientation. Prednisone will replicate the Lyme bacteria. It will drive the bacterial complex further into the body and across the blood-brain barrier. That is what had happened to me.
In spite of the fact that my intuition urged me not to, I continued taking the Prednisone for 16 days (he’d prescribed it for 20). On the 16th day, I made the decision to stop although the dermatologist, and a couple of my dear friends, warned me not to. The doctor must know what he’s doing, they said. You’re seriously ill and you should listen to him. The mental stress and anxiety caused by going through this process, on top of the continuous physical pain, was nearly unbearable.
We’re conditioned to listen to our doctors, take the medicine they prescribe, and to take what they say as the word of God. From my current vantage point, I look back and wonder what on earth I was thinking. How could I have thought that this guy was helping me? He kept me coming back because he wanted to biopsy my skin rashes. But the rashes lingered and didn’t improve. He was ready to perform a punch biopsy on my raw skin. I’m grateful that he kept waiting for the rash to improve before he did. He knew that a biopsy would likely make the rash worse. Partly because I so feared having that punch biopsy and partly because I felt like I was in the enemy’s camp when I went to his office, I simply stopped going.
That’s when I found a naturopath, Tod Thoring, in Arroyo Grande, CA. It was like being introduced to an angel, and it was another turning point in my long battle. This time it was a positive one. This was the beginning my new life. I’d found Dr Thoring and lucked into a situation where he and a very smart group of Lyme experts were putting their heads together to try and help people in dire straits, like me.
Today I consider myself lucky in every way. But that said, I know I’ve also battled my symptoms with every ounce of strength I had. And without the support and love of my partner and my mother, I wouldn’t have made it. I’m ashamed to say this, but when I was in the acute stage, if I’d had a gun, I probably would have pulled the trigger. The pain in my skin and muscles was so severe, so constant and unbearable. Instead of letting me hurt myself, my partner handed me a paintbrush and some tubes of paint. He supported me emotionally as well as he could, and set me on a path to healing.
During the acute stage some of my other symptoms were insomnia, hypersensitivity to light (especially florescent) and to being touched. I couldn’t stand or walk without holding onto a chair or a wall. I was dizzy all the time. My brain wasn’t functioning well enough to work or write, and when reading, comprehending even a simple paragraph was an insurmountable challenge. During this time, in spite of my state, I began interviewing doctors who I thought might have some clue about how to treat Lyme disease. I was determined to help other people like me who I knew were out there, going through this horrible process and needing to hear what the doctors had to say about it.
Navigating the technical equipment and recording the interviews was hugely challenging. Once, I could barely hear the doctor I was speaking to, and couldn’t figure out how to fix it. I strained to hear her through the entire session while her voice came through like a little mouse in my ear. It wasn’t until after I thanked her and hung up that I realized I had put my earphone in backwards.
I ached to be held and comforted, but couldn’t stand to be touched. I felt extremely lonely and isolated. I had horrible mood swings. I hallucinated. Once, while in the bathroom, I heard my father say my name. He died when I was 15 years old, more than 30 years ago, but I instantly recognized his voice. I heard my telephone ringing and a little girl on the other end asking for someone who didn’t live there. That particular hallucination happened a few different times. Each time, the calls upset me enormously, and she always called when I was home alone. I couldn’t understand why this little girl kept calling back, insisting on talking with someone who didn’t live there. Weeks later, I realized that I’d hallucinated her and all the conversations we’d had.
In Part 3 I’ll outline my diet and exercise routine. I’ll also pass along advice and suggestions from some amazing individuals. You’ll hear more about the Lyme success stories I’ve heard along the way.
A. My healing journey is still ongoing, and since Lyme changed my perspective on pretty much everything, I’m always vigilant about the consequences of my everyday choices. I’ve learned how critical it is, when dealing with any serious disease, to approach healing from as many directions as possible. This is called an ‘integral’ approach and there are four general life areas that come under consideration. I’ll get into all four areas in this multi-part post.
First, I’ll give you the general picture of the medicines and supplements I took and still take. To begin with, my doctor put me on a treatment protocol of antibiotics including Omnicef and Zithromax. He also started me on a regime of homeopathics and vitamin supplements to support my immune system. Here is a partial list of the supplements that I took everyday for the first year:
cod liver oil
After six months, my doctor recommended that I stop the oral antibiotics and begin IV treatment with the antibiotic Rocephin. I had been through a rough time physically and emotionally, and though I felt better, I didn’t feel anywhere near 100%. In addition, I didn’t have health insurance, and I understood the cost of the IV and the new antibiotics would be around $20,000. Financially, my illness had already set me back in two fundamental ways. First, I hadn’t been able to work full time. And second, I had spent a great deal of money on the medicine and supplements needed already. It was a pretty disturbing place to be. My doctor was a naturopath, and typically did not treat illness with antibiotics. I knew my condition must be very serious if he thought I needed the Rocephin.
I had to decide what to do. After agonizing over it for a week or so, I chose not to go with the IV, but decided to start the Cowden protocol. There was no lapse of time between ending my oral antibiotic protocol and beginning the Cowden, an alternative protocol that I had researched, consisting of Samento, Burbur, Banderol and a number of other herbal tinctures that originate in the Amazon. These native plants have been used to treat malaria for a thousand years or more. I felt like I could make it work.
The Cowden routine worked very effectively for me, and although it took a long time (several years) I’m happy with the results. The cost, while not cheap, was a fraction of what the Rocephin IV treatment would have been. Currently I’m on a break from the Cowden protocol. About a year ago I tapered off of it, and began taking a low dose (3 drops 3 times daily) of teasel root tincture which I still take. I made this decision after reading about it and interviewing a couple of herbalist/physicians who had found it to be immensely helpful for their patients.
It took me six years to get to the point where I feel normal again. It wasn’t a quick trip. More like an excruciatingly slow journey. Normal, to me, means that I can enjoy my family and friends and take time for them. I can pursue my personal and professional goals and work long days if I so choose without crashing, I can sleep through the night every night, and I can exercise rigorously every day. I can make plans for the future.
In my opinion, exercise and diet are more important than anybody will tell you. I consider Lance Armstrong and all the athletes I’ve had the honor of interviewing for our Lyme success stories to be my solid gold role models.
Next, I’ll give a bit of backstory and talk about what happened before I found my naturopath. What can happen when the doctors don’t know about Lyme disease and prescribe the wrong medicine?
If you’re in an acute stage, it might be worth a try to eliminate gluten products for awhile. Avoid baked goods made from wheat, spelt, kamut, barley, triticale (a hybrid of barley and wheat) and rye. Especially if your stomach aches after you eat these foods.
However, bread is the staff of life. Changing your bread-eating habits can be an emotional, not simply a nutritional, issue. My partner makes the best french toast this side of the Mississippi. Since we struggled through our Lyme journey, he only makes it as a rare treat, and any resistance is futile. I sweeten it with fresh blueberries or strawberries instead of maple syrup (okay, maybe a dribble of maple syrup). I wouldn’t use sugar or syrup (sorry folks) if you’re experiencing symptoms. But I’ve discovered that if I only eat french toast as a treat, I can get away with it. These days, six years past my acute stage, I’ve returned to an old habit of relying on pasta for a yummy dish that cooks up quick after a long workday. I’m a vegetable fanatic, so my pasta sauce is crowded with fresh organic veggies whenever possible. Even though my symptoms are gone and my health is vastly improved, I’m still very careful when it comes to choosing what to put on my plate. Adopting a largely gluten free diet seems to work well for my whole family. Just takes a bit of adjusting, which is easy these days.
A few years ago, it wasn’t easy to find quick alternatives to gluteny products. Nowadays a lot of name brands offer GF products in the grocery store. Boxed mixes may tempt you because they’re fast and easy, but boxed food tends to contain too much salt, sugar, or other ingredients you may be sensitive to. If you possibly can, buy bulk from your grocery store. Try some of the alternative grains that you used to pass by in favor of the more familiar ones. I know I used to pass them by, simply because I was in a groove (more like a rut) and a little bit lazy when it came to trying new foods.
Recently I’ve been experimenting with more organic whole grains such as millet, amaranth, buckwheat and quinoa in our dinners. Couscous is traditionally made from semolina wheat, so it’s not gluten free. However, there is a brown rice couscous on the market which is indeed GF.
One of my favorites so far is quinoa, which cooks up extraordinarily quickly. I also love cooking in a wok, which takes very little time and transforms the air with the smell of hot, fresh veggies and warm spices. Pairing quinoa with stir-fried vegetables is fast and satisfying. It’s amazing, but lifelong habits actually can be transformed, and we can change our old emotional associations with that piece of buttered rye toast or whole wheat sandwich. It just takes a little doing. But the effort it takes to live a pain free, post-Lyme life where we are finally liberated from symptoms is worth its weight in gold.
Learn more about Lyme disease diet.
What’s your favorite gluten free diet food? If you eat mostly gluten free, have you seen, or felt an improvement in your health? Please feel free to share recipes! I’d love to hear from you.
My own history of healing from Lyme seems similar to that of the person who responded, LymeAngl, although I followed the Cowden protocol for four years (after treating for six months with powerful antibiotics), taking 30 drops 3x daily, alternating between Samento and Banderol.
LymeAngl’s point about diet being everything is critical in my opinion. I have had a healthy diet my entire life, but then went gonzo with healthy food, fresh organic juices daily, fresh sprouts and fresh dark green everything, such as spirulina, chlorella, and leafy greens when I learned I had Lyme. I maintained that frenzy of healthy food consumption long after my horrid symptoms and the ‘daily dizzies’ began to slowly fade. Today, 6 years after my diagnosis, I am a devotee of a clean diet and exercise and believe they are two very important branches of a healing path.
I have written here about slipping off the health food wagon, the results of which have been disastrous for me. Beer and wine don’t work. Sugar is the worst. Coffee I can handle very infrequently, but I stay healthy now because I pay close attention to my daily habits. I exercise MORE, not less, as I get older; I consume no sugar or alcohol, and I have never been a soda drinker. I drink more water than most people are probably able to (because I'm fortunate to work at home, near the loo). I hardly ever drink coffee but I do drink green tea. I don't have a sensitivity to gluten which is fortunate. My diet includes a fair amount of dairy but I stay away from cow milk, which has never worked for me. Goat cheeses, lots of herbs and spices, and as much fresh organic produce as I can swing. I read labels voraciously and have learned to attend pot lucks and dinner parties without caving in to peer pressure, while at the same time not devolving into a buzz-killing 'health food lecturer' about the evils of sugar. Everyone is aware of the dangers by now & they need to wake up and make their own choice. It does, however, never cease to amaze me how much actual junk food people can consume, all while fervently believing that their diet is perfectly healthy. I’m a people person, always have been, so people’s quirks and imperfections tickle me to no end, but sometimes it's just too surreal to witness how strong the disconnect can be between somebody’s words and their actions.
For example, the other day I sat and watched someone woof down a sugary maple scone and a cup of coffee with sugar & cream, while describing to me her newly found enthusiasm for ‘cleansing.’ When I pointed out that scones are probably not the best cleanse-food she pouted, saying she had to have SOME fun. Ridiculous. What's “fun” is living life the way you choose to every day, not strangling in the grip of your own unconscious habits, not being held prisoner by disease.
I'm convinced that the key to healing from serious disease is to approach it from as many angles as you can discover. Never give up.
Please read about my "100 Perspectives."
A hot cup of ginger tea is comforting, and along with a pair of thick wool socks, can even help thaw your popsicle toes. Peel fresh ginger and slice it thin, add hot water and a drop or two of stevia. Curl up on your couch with a good book, and savor the moment. Read this article about 5 foods that warm you up.
In winter, it feels as though we’re purposefully being slowed down by external forces, such as bad weather and shorter daylight hours. Don’t fight the urge to stay indoors, sleep in and take naps if you can. Hibernate. You are not alone if you’re feeling antsy or a little blue. This is the ‘dead of winter’ after all, the time of year when average temperatures in the northern hemisphere plunge to their lowest. Be kind to yourself while you’re healing. Call your best friend and laugh. Watch a great movie. (Or a chick flick!) Make a handmade card for a child. Doing something -- even a small something -- for someone else is also a powerful healing act.
I like to remember one of my grandmother’s favorite sayings: When winter comes, can spring be far behind?
Holidays are a mixed bag, aren't they? On one hand, they offer a break from routine workday (or sick-day) stress. On the other, they can cause even more stress. First, there's the family get-togethers, which wouldn't be so bad except it means putting up with Uncle Fred or cousin Irma, who want to engage you in an intense conversation about your Lyme disease symptoms (which you're trying unsuccessfully to put out of your mind for one evening), or they are insisting that you immediately make an appointment to see this really amazing doctor they found because (although they have done no research themselves) they don't believe your doctor is treating you correctly.
Or, and this is the more likely scenario, your friends and family are thrilled to see you looking pretty good, walking upright, tracking conversation with ease, so they totally ignore the fact that you are indeed sick. They proceed to put the whole year (or three, or five, etc.) out of their minds completely. Like a bad marriage, your illness gets pushed into the past so everybody in the room can feel more comfortable. Your mother or your dearest friend then proceeds to pour you a glass of wine, pass the See's chocolate, and swoon over little Chloe's sugar cookies which are decorated with more candy than you've seen all year.
You may be able to politely resist the alcohol and pass on the cookie tray, but with a sigh you glance over the traditional holiday foods piled high on the plate your dear ones have placed in front of you. And it smells so good. If you've been making a sincere effort to heal, you have been good for months. No sugar, no wine, no Girl Scout cookies for goodness sake. Why not indulge a little, you tell yourself. However, as anybody with Lyme can tell you, one night of sweet indulgence on sugar or alcohol can zap your strength for many days, bring on a dismal case of brain fog and trigger chronic symptoms such as skin rashes, headaches, and more.
As strict as I am with myself, even I find it difficult to resist holiday temptations. A colleague wanted to meet downtown at a local brewery the other day. I had my last beer on Halloween and it brought about a skin rash on my fingers and hands, my weakest spot and most pernicious symptom. I am not drinking beer anymore. And wine, which is said to be good for you, is still alcohol, it's still sugar, and although it's a lovely thing to share a toast with your dear ones over the holidays it can be done with mineral water. Discipline? Yes, you need it in spades. Determination too. But tell me, what more motivating factor do you need than your own recent experience with Lyme symptoms?
My life is no less joyful or rich because I am not sipping wine, ordering a slice of heavenly Tiramisu, or dipping into the candy bowl after dinner. In fact it's just the opposite. The quality and beauty of my life intensifies the more I tend to my health. This Christmas I'll lift my glass and toast to my loved ones' health. Perhaps it's a cliche that if you have your health you have everything, but it's true.
Happy holidays, everybody. May you have fulfilling work, understanding relatives, true friends, and a clear mind and healthy heart so you may enjoy them all. "Wisdom is to the soul what health is to the body."
I told her that she was looking great, and she stopped pumping iron and grinned, blue eyes clear and sparkling. She thanked me for the encouragement, and I learned her name, Amy. As we talked, she told me that not too long ago, she'd been just about ready to quit the gym. Then a woman where she works (at the local hospital) started mentoring her about nutrition.
She laughed and told me that until recently, "I didn't know anything about food. I just ate what I ate."
I asked if she felt better. She praised her current state of health, saying that when she dropped the junk food and soda habit, and kept on working out, her energy increased and her moods improved, almost overnight. "I couldn't believe that what I was eating had so much to do with how I was feeling," she said. "Now I know," she said, flashing her beautiful smile.
I know that Amy's story isn't directly relevant to us Lymies. But her story is important because a lot of us simply "eat what we eat," without thinking about it, and don't even notice that nutrition has any bearing on our health, or on Lyme disease. We just don't know, until we know. Bad eating habits can depress our immune systems, damage our kidneys, clog our arteries and make us feel generally awful.
One thing that I learned from having been so ill, was that my body is a precious thing. I remember vowing to myself as I lay in bed for all those terrible months of acute Lyme pain, that if I ever got well again I would do everything in my power to stay healthy. In my mind, that meant vibrant, organically grown foods, exercise, laughter, continuing to develop my knowledge of nutrition and health, and loving myself as much as I care for my family and friends.
Doctors (MDs) do not get any training or education in nutrition. They do not get any training in preventative approaches. Their training is in treating us after they have diagnosed us as sick. We need to keep this in mind, and seek researched information on foods and drink that may harm us, or help us.
Junk food is a crime. We have a nation of obese, sick adults and children, and junk food is still legal. Please take a cue from Amy, friend and hospital worker, and "push the water," as she says. I had asked her what one thing she thought was making the biggest difference in her overall health improvement, and she had said "water." She drank sodas all day long before. Now she pushes the water, and it's making a big difference.
Are you drinking enough water? Have you dropped that addiction to sweets and junk? I wish it were different, but I believe that unless we take more control of our own diets and get smarter about our habits, we won't be getting better anytime soon.
On my reading list for the month: The Sugar Fix: High-Fructose Fallout That is Making You Fat & Sick
Ginger R. Savely, RN, FNP-C is a primary care provider who specializes in treating Lyme disease symptoms.
She has bachelors degrees in both Psychology and Nursing and graduated summa cum laude in her nursing class at the University of Texas where she was named Outstanding Graduating Senior. She has masters degrees in both education and nursing, and recently earned a doctorate degree in research.
Ginger is a member of ILADS, a prestigious group of world experts on the treatment of Lyme and other tick-borne diseases. She was honored by her peers by being selected to receive the 2004 Texas Nurse Practitioner of the Year Award. Ginger's clinic is called TBD Medical Associates and she is located at Union Square Medical Associates, in San Francisco. She can be reached at Ginger Savely.com.
It's great to get Ginger's perspective on nutrition, and as we talked about what Lyme patients can do to include diet and nutrition in their protocol, she mentions Dr. Royal Lee, who first recognized that processed foods cause many health problems. She points out that MDs are not trained in nutrition, and that in general, most interested citizens know more than their doctors about food and its effect on their health. MDs are trained to fix the current problem, not to counsel patients about eating a healing diet.
Patients looking for guidance in diet and nutrition generally cannot get it from their LLMD. Although there are exceptions, and many doctors do go on to study diet and nutrition as part of a healing approach, in general, MDs are just not trained to think in that way.
So, what's a Lyme patient to do?
To help her patients educate themselves about healing from Lyme disease, Ginger recommends that they read a book called The Fourfold Path to Healing, by Thomas Cowan. She says it's a must-read for Lyme patients. The 100 Perspectives that is available on this website is also a "cross-training" approach that I've taken for recovering from Lyme. Getting better requires looking at the bigger picture of health, and not simply taking the antibiotics prescribed by a doctor, even an LLMD.
Attitude is another part of the big picture that Ginger spoke with me about. Lyme symptoms often manifest in our emotions and mental states, and it is well-known that holding onto anger can be very damaging to the immune system. She discusses how she has observed that patients who hang on to anger or have bitterness toward the world can throw a wrench into their own healing process.
Listen to my conversation with Ginger Savely.
We all know that suffering with Lyme symptoms can really push you to the edge. So when an expert says, "do this thing, e.g., take a handful of vitamins, and you'll feel better," we will go to just about any length to do that thing.
If you take upwards of 30 different supplements per day (or if it just feels like you do), and you are a bit depressed by the amount of time, money and energy you spend on them, then Ginger Savely, FNP, is on your side. She is on the hunt for products that give us "the most bang for our buck." Instead of taking 30 pills, you can get the same amount of supplements in just a couple of products such as Green Vibrance, which includes many of the vitamins we want in our healing diets, and fish oil.
Ginger is a nurse practitioner with a doctorate degree in research, who owns the SF clinic where she primarily sees patients with Lyme and Morgellons disease, of whom a high percentage also have Lyme. But Ginger's work does not stop there. She is a lifelong learner (and a former Lyme patient herself), who is currently enrolled in advanced courses in clinical nutrition and diet.
She began treating Lyme patients over a decade ago, and over the years gathered her recommendations into a pamphlet that she provides new patients. One patient, after looking over the material, told Ginger that she "sat down and cried," after reading it. She simply felt overwhelmed by the amount of things to take. She felt she would never be able to take all the supplements she needed to take.
Her patient's response made an impression, and Ginger then began to listen to her own gut instinct, and change the way she views diet and food. She says that instead of putting the emphasis on vitamin supplements in isolation, she now sees diet and food choices as a central component in healing Lyme disease.
Ginger has long suspected that the isolated vitamins we consume may not be the most efficient way to supplement our diets. And she readily admits she has been guilty of it herself, advising her patients to include vitamins recommended by popular research studies. Yet in her gut, she's always been curious as to just how effective these vitamin pills are.
Asking her patients didn't clear up the matter much. They would often say they took a long list of supplements, not because the vitamins made a difference in the way they felt, but because they were afraid to stop, just in case they might feel worse.
But Ginger's instinct has pointed her in a different direction. In terms of eating well to support a healing diet, she might say it's back to the future.
What does she advise her Lyme patients to do now? Get your healing supplements directly from the food you eat. Eat the old-fashioned way, by which she means the way we ate 100 years ago. Don't shy away from a little bit of animal fat, she says. The chronic illnesses that are currently such a problem in the western world, such as heart disease and diabetes, have come about since we started cutting "healthy" fats from our diet and replacing them with refined carbohydrates and refined sugar.
Eat the way your grandparents (or your great-grandparents) did. Whole foods, meat with a little fat on it (preferably grass-fed and organic), organic veggies. Above all, no refined carbs or sugar, which have absolutely no place in a healing diet.
On the occasions when Ginger does indulge in sugar, she feels "foggy" the very next day. She is a self-described sugar-holic, so she understands how difficult it is for some people to give it up. Yet after a few initial suggestions, she says, patients who agree to drop sugar from their diets seem to need no reminding. The body knows it will heal faster without it. After a couple of weeks of going without, it simply doesn't appeal to them anymore.
If you do eat sugar, keep it to the whole foods variety which at least includes a little nutritional value. Blackstrap molasses, unrefined honey may be tolerated by some people. Agave sweetener is processed in the exact same way that refined sugar is, and we have been "sold a bill of goods on that," she says.
If you don't eat sugar, antibiotics will have a better chance of working, and you may heal more quickly. Ginger observes that her patients who indulge in refined sweets do seem to take a slower route back to living a vibrantly healthy, post-Lyme life.
Ginger is featured in our Expert Audio Series. You can hear her interview for free by signing up for our LDRD newsletter.
The emotional link between good times and sweet treats begins early in life. For some, candy or soda pop was the reward offered for being "good," quiet or out-of-the-way. For others, a piece of cake is sheer comfort. And heaven is a plate-full of freshly baked chocolate chip cookies. Later in life the pattern continues, reflected in the sensual language used to describe our desire for instant gratification. That gooey chocolate cake looks quite tempting. The box of See's isn't simply sitting on the table. It's trying to seduce you into peeling off the cellophane and lifting the cover.
Under certain circumstances, our resistance to sugary enticements can take on mythic dimensions. You don't want to hurt your lover's (or your friend's or your mother's) feelings, which seem to pivot on whether or not you accept their sweet offering. For some this is a willpower test of Biblical proportions.
Except when you have Lyme disease, and you know that indulging comes with a price. Remember how much it hurts to herx? That's all it takes. Just think back to the brain fog and headaches, or the last time your knees ached non-stop, or when even the satin sheets felt like sandpaper on your hypersensitive skin.
If you have an urge for some sweetness in your life, instead of splurging on a dessert try this: give yourself a present. A little luxury doesn't have to cost a lot, and it's a powerful way to help break a pattern you might have established in childhood. Sugar doesn't equal happiness. Buy tickets to a movie you've been wanting to see. Curl up with a new mystery novel and a cup of ginger tea sweetened with stevia. Call a friend. Rent a comedy. Pop some popcorn and pass it around, but when it comes to Valentine's candy, think about how really great you'll continue to feel if you simply say no thanks. And that will be the icing on the cake.
In some stages of Lyme, you may not feel much like eating, or you may not know what to eat at all. Everything is so different, even your taste for certain old favorites. If you've altered your diet because of Lyme, sometimes you really just crave "normal" food.
Chili is hearty and healthy. It's nice and normal, and one of our favorite comfort foods around here. Here's the basic recipe. Trust me - it's simple and won't make you think too hard. Plus, it'll make your house smell great. Sometimes I switch out the peppers for carrots, or skimp on the chili powder. The herbs are the key to making this dish really scrumptious and satisfying. Add some simple corn bread and you've made a wonderful winter dinner.
2-3 cans dark red kidney beans (drained)
2 stalks celery, chopped
2 onions, chopped
2 green peppers, chopped
2-3 T olive oil
1 28-oz can whole tomatoes
3-4 cloves garlic
3-4 T chili powder
2-3 T cumin
1-2 T fresh parsley
2-3 T oregano
1 1/2 cups of water
1 cup cashews
1/2 cup raisins (optional)
Heat oil in large pot; saute onions until clear, then add celery, green pepper, and garlic; cook for 5 minutes or so. Add tomatoes (with juice; break the tomatoes into small chunks) and kidney beans; reduce to simmer. Add chili powder, cumin, parsley, oregano, water, cashews, and raisins (opt.) Simmer as long as you want. Garnish with fresh parsley or grated cheddar cheese (if you like cheese, try goat, which is easier to digest).
Happy Winter Solstice to everybody.
Here's to your health!
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.
"[Chronic inflammation] is an emerging field," says Dr. David Heber, a UCLA professor of medicine and director of the university's Center for Human Nutrition. "It's a new concept for medicine."
The article continues: "The theory goes that long after the invading bacteria or viruses from some infection [such as Lyme bacteria] are gone, the body's defenses remain active. The activated immune cells and hormones then turn on the body itself, damaging tissues. The process continues indefinitely, occurring at low enough levels that a person doesn't feel pain or realize anything is wrong. Years later, proponents say, the damage contributes to illnesses such as heart disease, neurological disorders like Alzheimer's disease or cancer." LA Times article, 8/16/09
When you get a splinter, or a mosquito bite, or suffer an injury such as a broken bone, your body's immune system instantly responds to the pain and offense by sending more blood to the wounded area. The tissue swells and reddens while the healing work gets underway. While it's fairly easy to see a mosquito bite or detect a broken bone, chronic silent inflammation inside the body, which is what Lyme disease may cause, may go unnoticed for years because, as the article states, it occurs at a low level and doesn't hurt. The immune system doesn't switch off.
What can be done? Although more studies are necessary to determine the results scientifically, many people (including me) believe that their eating habits affect their health and can even help bring down chronic inflammation. Choosing foods rich in antioxidants is probably smart, and may even help you feel better while healing from Lyme infection. Antioxidants may slow down or inhibit the tissue damage caused by free radicals at the sites of inflammation.
The Mediterranean diet, for example, is high in antioxidants, including dark green leafy veggies, whole grains such as steel cut oats, nuts, oily fish such as salmon, and bright-colored fruits such as blueberries, pomegranates, dark cherries and raspberries.
Following an anti-inflammatory diet also means eliminating, or at least reducing food that can cause inflammation. Such foods include those with saturated fats, trans fats, corn and soybean oil, refined carbohydrates such as white sugars, red meat and dairy.
On a sunny day it's nice to come home from the grocery store or farmer's market and toss together a mouth-watering salad of greens. You might add in fresh ripe tomatoes, peas, shredded carrots and/or beets, and top it with a handful of broccoli or clover sprouts and drizzle on your favorite dressing. I like to crumble bits of organic goat cheese on top too. Raw foods can be beautiful to behold, and so full of zest and prana. The nicest part is that afterwards, you don't feel sluggish. Just clean and energized.
Fresh, raw food diets have been used with success to ease the pain of many chronic diseases. But your body must be at a stage where eating raw foods can help boost your vitality, and not simply give it more work to do. During an acute stage of Lyme disease, raw foods may be too harsh to digest. Before you become a raw foodie, talk with your Lyme doc. If possible, consult a nutritionist who is educated about Lyme disease.
During early or acute stages of Lyme disease, your body might not be able to handle many raw foods. However, since raw veggies are rich in enzymes, they can be very beneficial in later stages of Lyme.
Sprouts, though, are a helpful food to eat during any stage of Lyme. You don't even have to go to the store or the market for these - grow your own!
Given the right conditions, teeny-weeny vegetable seeds grow into flavorful veggies. Sprouted broccoli, clover and radish seeds can contain many times the nutrients of the mature vegetable. Broccoli sprouts are one of my favorites because they contain sulforaphane, a long-lasting antioxidant that has powerful anti-bacterial qualities.
Going raw is a personal choice, up to you and your doctors. You can always add more leafy green vegetables to your diet without going totally raw.
Veggies with sulforaphane:
Low-grade or chronic inflammation accompanies a bacterial infection such as Lyme disease. Chronic fatigue and lethargy are produced when the body is busy fighting infection. Reducing inflammation is key in regaining vitality and healing. It's smart to include foods in your diet to help achieve those goals.
Help your body reduce damaging inflammation with the following:
* Eliminate refined sugar and processed foods
* Reduce stress in your daily life
* Get enough early morning sunshine
Add some spice to your life -- specifically, turmeric and ginger -- to help reduce inflammation. They are both part of the same family of plants.
Turmeric is used to lend mustard its yellow color. It is used frequently, though sparingly, in Indian food. The active substance, curcumin, is a powerful, yellow dye that will stain countertops and plastic food containers. It's also a well-known anti-inflammatory. Turmeric can be taken in capsule form or you can sprinkle it onto your food. I like it on my eggs for breakfast, or added to the stir-fry veggies we often cook for dinner. A general rule of thumb is to use about a teaspoonful or less in cooking. More than that will make your food taste bitter.
Ginger root is the underground stem of the ginger plant. The powder and the grated root are often used in cooking and baking. Ginger has medicinal qualities, and due to its anti-inflammatory element has long been used to aid in arthritis and ulcerative colitis. Among other uses, ginger is antibacterial, and effective as a digestive aid.
Nearly all of the people we've interviewed for our Lyme success stories have said that modifying their diet has improved their health significantly.
* What changes to your lifestyle and diet are helping you heal from Lyme?
A lack of salt can be just as harmful as too much, as this elementary mineral is necessary for maintaining the balance of bodily fluids, helping transmit nerve signals, keeping muscles functioning properly and creating healthy blood and lymph.
Many chronic Lyme patients don't eat out due to their illness, and most of us go through at least a short period feeling absolutely yucky enough to keep us out of the public and away from restaurants. A lot of us stay away from packaged foods as well, eating fresh veggies and organic foods as much as possible.
If you eat a diet that is deliberately salt-free, how do you know you're getting enough of the stuff?
Reist's Pennsylvania clinic is located in the heart of what many consider a Lyme epidemic, and a significant number of the patients she treats for Lyme disease are vegetarians. Her chief concern is that many patients calling themselves vegetarian don't actually eat many vegetables. According to NAVS , the North American Vegetarian Society, a vegetarian diet can factor into radiant good health. However, getting enough iron and protein takes some knowledge and a little mealtime planning. It's easy for people to make the mistake of assuming that the absence of meat in the diet equals a healthier diet. Not true--especially if it means they've stopped eating meat and simply replaced it with pasta, potatoes and bread.
Generally speaking, vegetarians seem to benefit from an impressive amount of health advantages, such as lowered risk of heart disease, fewer cases of chronic disease and Diabetes Type 2, and on average, they live longer. However, eating a vegetarian diet doesn't automatically guarantee better health. Reist strongly suggests that her patients add eggs, cheese or fish to their diet as they struggle to heal from Lyme.
If you're a vegetarian or vegan with Lyme, how do you know you're getting enough protein? Do you include a wide array of veggies in your diet, and do you include legumes, which are rich in iron?
The answer is stevia, a plant-based sweetener that has been popular in Japan and other countries since the 1970s. Stevia has been available in the US, however, it hasn't been promoted as a sweetener. Its status has recently changed. Watch for products made by Coca-cola and Pepsi to containstevia, which recently been vindicated by the Food and Drug Administration and found to pose no health risks.
"The [FDA] agency has granted the all-natural sweetener status as "generally recognized as safe" (GRAS) after Cargill and Merisant Company achieved a process called "Self-Determination of GRAS Status".
Valentine's day is closing in, and you can't get far from the heart-shaped boxes of sugar candies that are popping up in every store. If you've got a sweet tooth, be strong and ignore that chocolate urge. Be good to yourself while you're healing. Go get somestevia and try a couple of drops in your morning tea or steel cut oats. If you've never used it before, be forewarned: the stuff is strong! Go light. Couple of drops will do.
Protein works through the lymph system to help carry nutrients to your cells, and carry away the waste. Jean says she practically begs her patients who won't touch meat or fish to consider eating an egg or a slice of cheese. Her concern is that many people who call themselves vegans and veggies often fail to educate themselves about alternative sources of protein. Instead of eating a balanced diet, they simply consume more pasta and grains: more carbs.
Carbohydrates increase inflammation, which is exactly what we Lymies are trying to avoid. So although it's very easy to fix up a plate of spaghetti with a quick and tasty marinara sauce when you're cold and tired, it may only exacerbate your Lyme symptoms.
Meat, cheese and fish is all good, if it works for you. However, many health and diet professionals believe it is possible to get enough protein on a high quality vegan or vegetarian diet. You must educate yourself. Protein is available in foods such as phytoplankton, beans and kelp. Mmm, right? I know some of you don't consider phytoplankton food, unless you're a Baleen whale fitted with a special feeding mechanism.
Although I haven't consumed fast food since high school days, I am not a vegetarian. I have a weakness for salmon and goat cheese. I do take supplements, however, like so many people dealing with Lyme, and because I know that protein is a must for keeping my immune system in check, phytoplankton capsules are high on my list of daily requirements.
If you're a vegan or vegetarian, how do you get enough protein? I'd love to hear from you.
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.
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.
Eating foods that help keep you warm will also help you achieve better balance, and support your immune system. Curries and salsas, though they may seem to be warming foods, are eaten in countries with warm climates, to help induce perspiration and cool the body. What is important now, especially if you're healing from Lyme, is to eat foods that help keep your body temperature normal.
Delectable, fragrant soups simmering on your stove can cheer up long, dark nights, and in addition, are warming and help keep the body's inner fire burning. Include a variety of grains with your winter meals, potatoes and other root vegetables, along with leafy greens, aduki and black beans, winter squash, walnuts, and a bit of meat - if you eat meat, that is. Greens are always important, and many people healing from Lyme employ raw foods with great success. However, during the coldest part of the year you should avoid raw salads, in fact in some schools of thought it is said that in winter, all foods should be cooked.
Thanks to Lesley Tierra, L. Ac., Herbalist, for the above information which is gleaned from her book, The Herbs of Life: Health and Healing Using Western and Chinese Techniques.