Lyme Disease Research Database Independent reporting on all aspects of Lyme Disease

Mar 2012

Mind your brain health!

Whether we’ve recently received a diagnosis of Lyme disease, or we’re dealing with recurring symptoms, eating right and exercising are core considerations of a good protocol. We know the importance of foods rich in Omega-3, lean proteins, and a rainbow of vegetables which are high in antioxidants and key vitamins. The physical health of the body is usually our main focus in healing from Lyme.

But what about mental health? You know, brain fog. One of the most disturbing things about Lyme is that the bacterial complex can actually cross over the blood brain barrier. That means it may affect your cognitive abilities, the ability to pay attention; your speech centers, creating stutters or slurs; your memory; your balance and more. I’ve found that
herxing can bring on a ridiculously frustrating case of brain fog, even when other symptoms have faded.

What is really hard to explain to someone who has never been through it, is the unique torment of days filled with sensations and events that you can’t know with certainty even exist. Did I hallucinate that smell, those sounds, or is there someone else in the house? And if that isn’t real, how can this physical pain be so tortuous? My heart goes out to anyone who is at that stage of Lyme.

As Winston Churchill famously said: “When you’re going through hell, keep going.”

Having been dragged by Lyme through the murk and come out on the other side, I can now look at that component of the disease with some objectivity. Yes, it’s crucial to take your
antibiotics (whether conventional or alternative), nourish your body with whole foods and detoxifying fruits like strawberries and blueberries, exercise and stretch whenever possible, and by all means rest.

But because of this mental component of Lyme, it’s also absolutely necessary to
exercise our brains, and therefore help keep our minds fit. The general rule is to try new things.

Try this:
Play music - dust off your violin or sit down at the piano
Go to a museum or concert - if you’re not well enough to do so, take a virtual museum tour online


Play games - try lumosity.com or brainmetrix.com
Paint
Write
Cook
Play Sudokus or do crossword puzzles
Read a book - on an iPad or the old-fashioned paper kind
Try learning a language

Almost anything can be learned online, either with a live teacher/virtual classroom or software program. If you have a yen for learning something, from Yoga to Mandarin Chinese to how to improve your fingerpicking technique on the ukelele, the important thing is to try something new. When you can.

Make a promise to your mind that you’ll do whatever you can to help your brain stay fit so that when you come out on the other side of Lyme disease, you will be smarter and healthier than ever. For it’s true what Nietzsche said: “That which does not kill us makes us stronger.”

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Sweet Alternatives: Splenda or Stevia?

Have you thumped your thymus lately?

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!

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An integral approach to healing from Lyme

Lyme affects all the systems in the body, including the brain and therefore the mental state. It seems important to recognize that Lyme, as a complex disease that can be very hard to heal from, must be treated from as many angles as possible.

I’m not writing about this approach simply because I read about it somewhere and thought it sounded good. I’m a walking, talking example of someone who beat Lyme because I practice an integral approach myself. It begins with recognizing that in any given event, there are four perspectives that represent the fundamental dimensions of an illness, as stated in the post above:
  • Physical state
  • Mental state
  • Cultural views
  • Social systems

We’ve already touched on the first two angles, and explored how you can see one but not the other. The doctors can treat your physical body with medicines while often missing entirely your state of mental-emotional health. Sometimes mental problems can clear up when only the body receives treatment. Other times it takes another approach.

Cultural views, the third angle, include other peoples’ thoughts and opinions about your experience. Think about the impact that your family members and friends’ ideas about your illness have influenced or affected you. Whose advice do you seek out in times of trouble? Your psychologist, your BFF, your mom, and the opinions of other important tribe members all play a role in your approach to healing Lyme. And in many cases, this has proved itself not a simple disease to heal. What happens to the people who have experienced recurring symptoms?

Say, for example, that your manager at work came across an article that restates the IDSA’s guidelines for Lyme treatment, and he knows you have completed the requisite three weeks of doxycycline when you suddenly begin to complain of arthritis or fatigue -- again. If he believes hands-down that the IDSA must know the optimal treatment for Lyme, he may not believe that you are still not well. He may even suspect that your symptoms are “all in your head.”

I remember when a writer friend whom I trust and admire queried me about my pain. I had confided at lunch that I was having trouble writing because I couldn’t remember from one sentence to the next what I had just said. You look fine, he insisted. I was hurt. It felt like betrayal. He didn’t believe me, and I hated being put in the position of having to defend my illness. The opinions of others still hold sway even if they’re wrong.  On the other hand, when others believe in us and hold a space for our healing, it can feel as liberating as fresh air. It opens the way for our progress.

The fourth angle of the integral approach is the social systems. Think of the health care system, and whether or not you can afford access to coverage. Can you not get access because you’ve been denied, or because you had to quit your job and can’t afford COBRA? Systems are simply there whether you are aware of them or not. The emergency room, for example, is a social safety-net system. If you haven’t been privy to a doctor’s care for one reason or another you may wind up in the ER in a health crisis. That’s an example of falling unintentionally into a social system that may be your only option. An example of an intentional use of a system may be your own research into alternative care, which leads you to an integrative doctor and a trip to the pharmacy for herbal tinctures and supplements.

As you can see, the social systems available to us are largely influenced by where we live, which country, and how near or far we are to the kind of doctor or medical team we need. Many people with Lyme disease have come up against the cruel realization that not enough medical professionals are educated about diagnosing or treating Lyme. Numerous people have had to travel by air across state lines, sometimes thousands of miles, to get to a doctor that will give them appropriate treatment. Social systems are not incidental to the story. They lie at the heart of it, influencing the outcome just as cogently as do the other three angles.

Bear in mind that these four perspectives are not unique to illness but always arise naturally, and always together, in any given event you can think of. Even when you’re healthy you can still identify all of these dimensions. Each area only tells a part of the story. Each part contributes to our experience as a whole. They cannot be separated.

Once we recognize how these dimensions work together in our day-to-day life, it’s easy to see where things are functioning well and where they aren’t. Being aware of dysfunction gives us a much better chance to change it. And to get better.

Learn more about this approach on the
Beat Lyme page.
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