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supplements

Diet and Supplements

Lyme makes excellent troubleshooters of us. People with Lyme disease are an innovative species. We tend to reach out and try new things. We've got to, because sometimes that's the only way to find the best remedies and treatments for our particular situation.

Every winter, I get eczema on my legs and hands, no matter what I do or how I eat. It’s frustrating. Yet each spring, it goes away as the weather warms up. Along with record-breaking temps and bitter winter cold comes an added challenge: Dry air inside. If you suffer from eczema, these cold, dry conditions can make a breakout unbearable. Your doctor can prescribe steroidal creme. Mine did, but after my horrid experiences with Prednisone, I couldn’t even bring myself to open the tube. I am mega-cautious when it comes to any medicine with steroids in it.

Manuka honey and Shea butter
By chance, I learned about Manuka honey from a friend who works at the local hospital. It comes from New Zealand, and the bees cultivate the nectar from tea tree bushes, with its famously potent antibacterial agents.

Turns out this hospital—a Western-medicine-centric place—like every other hospital in the US, orders Manuka honey by the boatload. Doctors in the ER use it on bad burns, deep gunshot wounds, and eczema.

It’s a good sign when your average hospital in the US starts using healthy “alternatives.” The type they use is trademarked Medihoney. I bought The Wild Bee brand at the local healthy foods store and started applying it directly on my skin. Mixed with a bit of Shea butter, that is.

Of course, nothing beats butter to seal in the moistness. Once in the morning and again before bedtime, I dab honey on the patches of dry skin, then slather it with a layer of Shea butter. Especially in the winter, I’ve found this combo to work like nothing else to soothe my dry skin and keep the eczema from getting worse.

I’ve long avoided eating any honey because our bodies react to it the same as sugar. Excessive amounts of sugar are to be avoided when the body is fighting any infection, but especially when it’s battling a fierce opponent such as Lyme. Manuka tastes lovely, but be cautious adding it to your diet. I do not recommend eating any sort of honey if you’re harboring a load of Lyme bacteria.

At the same time as I started using the Manuka on my skin, I also changed my diet. My doctor recommended that I limit my diet to find out if it could be a food allergy triggering the eczema. It may not be solely due to the cold dry winter weather.

Give GF a try
So I quit eating most of the common allergens. My diet is now 100% gluten-free and dairy-free. Wheat has never bothered me in the past, but by eliminating it completely and then experimenting with adding it back in, I’ve discovered that it actually does make my eczema worse. So, no more wheat for me.

Soy, although another potential allergen, isn’t problematic for me. I drink soy milk and eat tofu and edamame. Soy provides a good nonfat source of protein.

Bamboo leaf tea for silica?
In addition, I’ve added in a daily dose of bamboo-leaf tea. Over the past few years, I have experimented with preparing this tea, mainly because it’s very convenient. We happen to live inside a bamboo grove. I enjoy the process of picking and cleaning the leaves, then roasting them and grinding them up for a pot of tea.

Bamboo leaf tea has a pleasant grassy fragrance. It’s a light green tea which combines well with other teas (I especially like it blended with Jasmine green). It’s also very nice just brewed all by itself. Bamboo leaves are a high source of silica. The second-most common element on earth, silica is necessary to restore and regulate the amount of collagen in our bodies. Lyme bacteria eats away the collagen in our joints and skin. Bamboo leaf tea may help replace it.

What I don’t know yet is how much of the silica actually gets absorbed into our bodies from drinking bamboo leaf tea. How much is bioavailable? I’ll let you know as soon as I find out.

Turmeric with black pepper to reduce inflammation
Now let’s consider a very important spice—one that’s probably in your kitchen. Turmeric is highly recommended for reducing silent inflammation associated with arthritis, gout, heart disease, a whole host of other ailments, and of course, Lyme disease. Research into the cause and effect of Alzheimer’s disease on the brain has pointed to some very convincing scientific evidence that turmeric helps heal the brain, thus slow the aging process itself. But turmeric taken alone is evidently not as effective as turmeric that includes pepper. The addition of black pepper renders it many times more effective.

These are just a few of the supplements, therapies, and lifestyle changes that I’ve personally experimented with over the years. If something isn’t working for you, you might want to try a different remedy. Listen to your own body, be patient, and you’ll find what’s best for you. Different things work differently on different people, but these are some that I’ve come to depend on, to help me maintain the quality of life I’ve gotten used to since healing from Lyme.

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A new year list for healing from Lyme

Setting new goals and dreaming new dreams can happen at any time. In January, though, you can almost feel a collective buzz as so many people set goals and re-evaluate past aims. If you are healing from Lyme, how does goal-setting work?

I can't remember having the consciousness to set many goals when I was really sick. It was enough to remember to take which medicine when. I used to joke that with my Lyme-brain fuzz head, tracking those meds and supplements had become my full-time job. The little notebooks I kept were my external memory drive. I could not have gotten through it without some sort of system.

New goals can seem very big and abstract. A lot of people want to work on changes in their job status, their weight, or aim for a vacation destination or specific financial goal. People dealing with Lyme often feel their world's been shrunken to the size of a thimble though. New goals any bigger than keeping track of your daily routines can be overwhelming. Still, if you're in the mood for taking a bigger picture approach, writing down your desired goals can be really healthy. It can also be healing just to reflect on last year's goals in relation to where you are today. How has your situation changed since last New Year?

Here are two ideas to try, to kickstart your new year of intentions on the healing path.

Make a gratitude list
Perhaps you already do this on a regular basis. If so, good for you. This simple act, done every night before bedtime, can be one of the most transformational things you could ever do for yourself. You can make it as general or detailed as you want, but try to be specific as you write, and really visualize the faces of the people that you're thankful for, or the doctors or nurses, children, parents or friends who showed up at your side during the worst of days. Name them all and send each one a special prayer of thanks as you do.

Name your furry kids, too. Our pets are unconditional givers. My sweet kitty, who was always by my side during my roughest months and years, recently died at age 13. I grieved for her, and also cried tears of gratitude for all the love, affection, and moments of wonder and laughter she gave so naturally throughout her life. Her passing marks a new point in my own healing stage. It was as if she came to be with me especially as I got through Lyme.

Make 12 new monthly goals
You don't have to reach the moon every four weeks. Take baby steps, and you can always adjust your monthly goals as you go along. Last year I decided to give up gluten for awhile and see how it affected me. The first thing I noticed was that there were no more sandwiches in my future. I adjusted that goal a little and things turned out fine for me.

Relinquishment goals such as that can be valuable of course, but include positive goals too. Consider how you might parse the 12 months of this new year. You could go by the seasons, or some other way that strikes you as important. Are your first three months going to focus on getting better treatment or changing doctors? Maybe your second three months could be about integrating a healthier diet and exercise routine into your schedule. One set of three might be focused on personal/cognitive skills such as starting some new brain exercise games, then you might think about making goals around who you'd really like to attract as your mentors and buddies – your healing community.

Whether or not you set goals for the new year, we wish you much love and rigorous good health as you make progress in healing from Lyme.



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How many vitamins are too many?


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.


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Ever reached a crossroads in treatment?

Have you or your Lyme doctor chosen to supplement or substitute your treatment using herbal therapies, homeopathic remedies, or other alternative treatments? Over the years, I've noticed that a fair number of people who are undergoing Lyme treatment at some point decide to switch to, or at least try, herbal remedies, traditional Chinese medicine, rifing, super-oxygenation, or other alternatives to conventional antibiotic treatments. It seems that a lot of us reach a crossroads at some point in our healing journey, and have to make an important decision.

In my case, I treated with heavy doses of antibiotics for six months, and over that time period I slowly emerged from the hell of the symptoms I was experiencing. I'd been diagnosed in a late stage of Lyme, and the treatment had been as hard on my body as the original symptoms, or even worse. Actually it was impossible to tell which was worse, the treatment, which made me re-experience the original symptoms, or the sickness itself. After six months of treatment I had returned to work and was feeling generally better, but was unable to continue antibiotics for financial reasons. I reached the end of that six-month period and although I was relieved to get off the antibiotics, my doc was clearly worried about a relapse. I kept up my herbal and vitamin supplements, which were super-expensive but proving to be well worth the cost. I was curious about Samento, so I started Dr Cowden's herbal antibiotic protocol as soon as possible after I took my last conventional pill. I've always been proactive regarding staying healthy, so getting enough sleep, regular exercise and eating a good quality Mediterranean diet are my staples.

For many reasons (not only financial), Lyme patients decide to try herbs, or many other types of treatment such as HBOT (hyperbaric oxygen treatment), rife machines, Vitamin C and salt, or other compelling treatments. For example, Matthew Wood, the renowned herbalist I spoke with a couple weeks ago, tells us he's treating Lyme successfully with the common herb, teasel, and that instead of killing the bacteria, teasel warms up the body's environment and lures the bacteria out from its hiding places to be killed off by the body's own immune defense system.

In some cases, people I've talked to say they simply had an inner compulsion to switch up treatments. Evidence exists to support changing types of antibiotics because the Lyme bacteria will grow accustomed to one type of treatment, and just stop responding to it.

How did you or your doctor respond when you reached such a crossroads in your Lyme treatment? If you made changes in your treatment along the way, how did your switch effect you? Has it been positive, challenging, or pushed you into a new level of healing?

 
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Your Lyme treatment & supplement safety

Health insurance may be directly affecting your ability to get the medical treatment you need. A fair number of people who leave comments on this blog tell about the confounding experience of being rejected by their insurance companies. When a door slams in your face, whether you are in the middle of treatment or just beginning, your treatment choices are reduced or eliminated entirely. What then?

So now that the dust on the Congressional floor is settling, and the historic health care reform bill has passed, how will it affect your treatment? If your insurance company has refused to cover you for pre-existing conditions, will you now be able to reapply for coverage? During the coming weeks, we will be interviewing medical insurance experts who can help us understand the fallout from this historic passage.

Meantime, I want to call your attention to another bill under consideration, one that might also affect your treatment. I know I'm not alone in supplementing my treatment with vitamins and herbs. There is currently a bill in congress that, if passed, could change our ability to buy vitamins and supplements as common as CO-Q10, Vitamins D, C, and others.

The Dietary Supplement Safety Act of 2010 (S.3002), would amend The Federal Food, Drug, and Cosmetic Act so the FDA would have absolute discretion to decide market availability of, as well as mandatory recall authority over, supplements. Some are calling this proposed act a prohibition of supplements.

We believe that consumer safety is of the utmost importance, and S.3002 has targeted products containing steroids and other illegal substances. However, the entire vitamin and supplements industry could as well be effected, with devastating results to small-company suppliers of herbal supplements, vitamins and to the people who buy those items to supplement their treatment.

As health advocate Stephen Sinatra, M.D., F.A.C.C., F.A.C.N. puts it, "The problem with this bill is that its provisions are too broad, and don't specifically target the problems at hand.

We need the FDA to protect consumers against harmful products without smothering an industry that lacks the resources to comply with over-regulation. Coupled with greater FDA authority to decide which supplements are suitable for market, the new regulations create the potential for pharmaceutical companies to indirectly strong-arm smaller supplement companies out of business.

A more realistic balance between consumer safety and freedom in health care is possible through a more streamlined and carefully structured bill. S.3002 should not be passed as is, and public opposition could set the stage for closer scrutiny of any related supplement regulation."

Concerned about the future availability of supplements in your Lyme treatment protocol? Let your Senator know your opinion. Send an email or a place a quick phone call. Want to read the bill? Google the Dietary Supplement Safety Act of 2010 (S.3002) to view the .pdf.

Learn how to approach Lyme through holistic cross-training.
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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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