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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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Bulls-eye not the only skin rash in Lyme diagnosis

Lyme disease is found in patients whose skin rashes do not look like the bull’s-eye, or so-called “typical” Lyme rash. Skin rashes related to Lyme disease may differ conspicuously from the bull’s-eye type. Lesions may resemble numerous other skin conditions, such as those associated with contact dermatitis, lupus, and spider bites.

“Researchers note that multiple textbooks and websites prominently feature the bull's-eye image as a visual representation of Lyme disease.” They write, “This emphasis on target-like lesions may have inadvertently contributed to an underappreciation for atypical skin lesions caused by Lyme disease.” -- Some Visible Signs of Lyme Disease Are Easily Missed or Mistaken, Science Daily, Apr 22, 2013

Disregard for skin lesions that are unlike the bull’s-eye rash can be a mistake. Early detection and diagnosis is crucial in getting proper treatment, and early treatment is the best prevention for trouble down the road. Steven E, Schutzer, MD, Professor of Medicine at the University of Medicine and Dentistry of New Jersey-New Jersey Medical School,

Clinical diagnosis must consider any skin rash, regardless of its resemblance to the bull’s-eye. Other symptoms may include fever, flu-like malaise, and headache, as well as sensitivity to bright or fluorescent light. Doctors must also consider context, and whether the patient has been in an area where Lyme disease is endemic.

Misdiagnosis is problematic. Get a second, third, or fourth opinion if your doctor does not listen to your concerns, or if he or she disregards unusual skin lesions, or any of your symptoms.

This development in the evolution of Lyme diagnosis is exciting, because it can help medical experts to dispel one of the common myths regarding symptoms that indicate the presence of the Lyme bacteria. Our gratitude goes out to the medical research team who made this discovery, guided by Steven E, Schutzer, MD, Professor of Medicine at the University of Medicine and Dentistry of New Jersey-New Jersey Medical School.

Personal experience taught me what took medical science years to prove. Having had Lyme before these studies were conducted, I am one of the many who did not benefit from the latest research. Instead, doctors and dermatologists insisted that my severe skin lesions were a bad case of eczema and not an indication of Lyme. I was told to “take it easy,” and “get a handle on my stress levels,” and my skin condition would go away.

Nothing like a life-threatening skin rash to make you a little stressed.

Even after being admitted to the ER with a staff infection due to the increasingly spreading rash, doctors believed that only the bull’s-eye rash would signify Lyme. As a result, proper diagnosis and treatment were significantly delayed. Do not let that happen to you or your loved ones.




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Healing from Lyme - Part 2

Before receiving the correct diagnosis for Lyme and coinfections, a dermatologist had put me on Prednisone to try and control my severe skin rashes. This was a nearly fatal mistake on his part. It marked a crisis point in my illness. I also received lectures by this doctor about how I “really should stop scratching myself raw while I was sleeping.” I wasn’t sleeping, and I knew he was wrong. The skin on my body wasn’t opening up due to scratching it. It was infuriating not to be heard.

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.  


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Tennis star beats Lyme disease

Beautiful and powerful tennis star Samantha Stosur faced her formidable opponent squarely. In 2007, she was struck down with Lyme disease, battling severe fatigue, skin rash, and other symptoms that ripped her off the path to stardom. Since that time, she has not only beat Lyme disease, but also proved herself as a force to be reckoned with on the tennis courts.

Why do athletes seem to have a superb ability to beat Lyme and other serious diseases? There are probably many reasons. We believe it has something to do with maintaining a positive mental focus on winning (putting mind over matter), and regular exercise, which warms up the body's core temperature. Although Sam was unable to exercise (or indeed, even take care of herself) while the disease was in an acute phase, she did return to training and competing as soon as she could muster the strength.

Athletes engage in a program of regular vigorous exercise which raises their body temperatures on a consistent basis, which induces sweat. The raised temperature heats up the body's environment, keeps the lymph flowing at a healthy rate, and kills off toxins and bacteria so they can be carried away in the sweat and washed off.

This is a recent story that probably didn't escape your attention if you are a tennis fan and you have Lyme.

Watch a brief interview with Sam.




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What's stressing you?

Stress is believed by many to be a huge contributor of illness. Struggling with Lyme disease symptoms is stressful not only on your physical and mental bodies, but also on your emotions. And to top it off, even your own awareness of the stresses in your life can be a source of anxiety.

I remember when I was told that my Lyme-induced skin rash was nothing but a bad case of eczema. The nurse practitioner I'd gone to for help asked me in-depth questions about my rash, my diet, and my health history. She seemed puzzled that I was not the type who might suffer from eczema. I had never overused antibiotics, my Mediterranean-type diet included fresh greens and did not include sugar or alcohol. I was very much in love with my life-partner and running a small business that satisfied my financial needs, and which gave me time to spend with family and friends.

As I stood to leave, she peered pensively over her glasses at me and tapped her pen against her chin for a second. "You really must do something about whatever is stressing you out so badly," she said.

When I returned a blank look, she threw me a doctorly look and added, "think about it."

On the drive home, I soul-searched, but still couldn't locate a source of stress along the magnitude she was referring to. It wasn't as if I was living in a bubble, I had certainly had my challenges and bumps on the road of life. But at the time, things were going well. As a naturally self-reflective person, I felt a little embarrassed. Out of touch with myself. Was I making myself sick? By the time I pulled into my driveway, I had concluded that there must be something really wrong with me -- mentally and emotionally, not physically.

Months later, when a different doctor had my blood tested at IGeneX and I received a positive diagnosis for the Lyme infection, I felt that odd sense of relief familiar to many people with this disease. The illness, the mysterious symptoms, the long journey to a positive diagnosis, and the diagnosis itself is so hard-fought and hard-won. And finally, the physical and mental stress of treatment itself. It was a little like that old joke about the tombstone engraved with "I TOLD you I was sick!"

If you think stress might be a contributing factor to your illness (or like me, even if you don't), here are 7 things to do to eliminate or reduce tension and anxiety every day.

1. Set strong boundaries.

2. Take time for yourself.

3. Find areas of your life to maintain control.

4. Learn when to say "no, thanks."

5. Surround yourself with supportive and proactive people.

6. Ask for help when you need it.

7. Love yourself.

How do you deal best with the everyday stresses in your life, as you heal from Lyme? Please let me know in the comments. I'd love to hear from you!



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Waiting room - Lyme story

I was sitting in the crowded, stuffy waiting room, when the guy seated across the aisle started talking.

"I got a rash all over my chest," he said to no one in particular. "They gave me the wrong blood pressure medicine," he continued. "Can you believe that? I can't sleep, it itches so bad." He went on explaining the details of his story and the painful rash, eventually reaching up as if to unbutton his shirt to prove it. I buried my nose in my magazine. The man stopped, looked around to see if anyone was listening. No one was. He leaned toward me. "What's wrong with you?" he said. "You don't look sick."

My long skirt hid the white gauze bandages wrapped around both shins from ankle to knee. Beneath the gauze, the skin on my legs was hamburger from a mysterious rash that had been getting worse over the course of the past eight months. I'd been practically living on an alkaline diet, including lunches of delectable dandelion greens, and downing numerous turmeric capsules, since a holistic doctor had told me that I had eczema. I didn't drink, smoke, and I could count on one hand the times I'd taken antibiotics in my entire lifetime. I wasn't the type to get eczema, and that diagnosis had taken me by surprise. Even so, I religiously followed the doctor's suggestions. Still, I'd had no luck with the nasty rash. When the pain became so vicious that I could no longer even walk, my boyfriend drove me to the ER. Before walking into the waiting room, I'd spent the weekend on IV antibiotics. The ER docs informed us that I had almost died from a staph infection on the verge of going septic.

The man may not have noticed the cane leaning next to my purse. I smiled weakly. "I don't know," I shrugged. He narrowed his eyes, as if I was withholding something he deserved to know. Then he nodded and sat back.

My heart leaped at odd intervals, like a fish jumping in a shallow stream, making it hard to catch a deep breath. The one fan circulating in the room didn't do much to relieve the stuffiness. The dull headache I'd had for a week seemed worse under the florescent lights and the blaring TV high on the wall. An attendant in a green tunic appeared from the hallway and glanced at her clipboard. When she called my name, I stood and steadied myself with the cane and proceeded to walk as well as I could toward the hall. Vertigo gripped me, making me lose my balance. I almost bumped into the knees of the man with the rash. "M.S.," he muttered.

I stepped on the scale in the hall. The attendant adjusted it and recorded my weight. In the doctor's office, she took my blood pressure, handed me a hospital gown and left the room. I sat on the stainless steel table under the glare of the florescent lights, and waited again. So this is what public health care looks like, I thought. What was wrong with me? I had always been healthy, was always the one to choose carrot sticks over potato chips. On top of that, I was happily in love, and even starting a new business. In a million-zillion years, I never dreamed I'd be in this position. But here I was, in a small California coastal town, in the middle of my life, in such a weakened state that I could barely recognize the thoughts swimming through the thick fog that had descended in my brain.
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Diagnosing Lyme: Lies & half-truths

It irks me to see inaccurate info about Lyme on health-oriented blogs. For example, I just read the sentence: "Lyme is completely treatable. No need to panic," and now I'm really bugged. No, I don't want everybody to panic. However, it's just such unfounded casualness about Lyme that creates the illusion that one needn't seek a Lyme aware doctor's advice right away, at the first suspicion of Lyme symptoms or the presence of a tick bite. There is absolutely no evidence that the person making the claim has any awareness of just how dangerous, and multi-stage, Lyme can be when left untreated.

The same blogger also cavalierly states that "a characteristic bull's eye rash will show up within 3 to 30 days." GRrrrrr! Not true. Up to 50% of people with a Lyme infection will never show signs of the circular, red skin rash. Diagnosing Lyme is a tricky thing, part art, part science. Even ILADS doctors differ in their approach to diagnosing Lyme. I skim the blogs like a watch-dog, looking for useful information. I'm vigilant. I can sniff out a lie about Lyme faster than you can say "neuroborelliosis."

How is the blog-skimming public supposed to become informed, with half-truths and lies circulating so freely? The mis-truths and misinformation all stems back to the opinion of the CDC -- in the form of the IDSA -- that Lyme is not a serious disease. I am really looking forward to following up on the results of the antitrust investigation into the IDSA's guidelines for the treatment of Lyme. Stay tuned. I'll be posting whatever I sniff out right here.
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Suspecting Lyme disease

Lyme's ability to mimic hundreds of other conditions complicates diagnosis of the disease. When is a skin rash just a skin rash? When it is cause for concern about Lyme disease? What types of rashes are suspect? Clinically diagnosing Lyme can be a complex process requiring intuitive, educated, Lyme literate physicians who won't simply dismiss seemingly unrelated symptoms.
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