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A Holistic Approach To Treating Lyme

Q. I was diagnosed with Lyme last July (2010) after several neurologists told me I had a motor neuron disease - ALS (Lou Gehrig's Disease).  My family and I were thrilled to find out it was Lyme as at least it wasn't a death sentence.  But after nearly 6 months on IV Rocephin and other antibiotics and many supplements and 5 IVIg treatments to modulate my immune system - I am still not feeling much better.  I do have more energy than before the antibiotics but my speech is poorer, my body twitches when I'm still and I feel a sense of vibration in my hands and feet.  I have some joint pain in my elbow and fingers, but it’s not too bad.

I really love my Lyme doctor she listens and adjust my doses at my monthly visit. I fill out a symptom list every day ranking my symptoms from 1 to 10.  I go weekly to her office for my PICC line to be checked by a nurse and they draw blood at that time to check things.  I feel taken care of -- but I never thought it would take as long as it’s taking.

I had read at some point that you beat Lyme with a more holistic approach - can you elaborate on that for me?  I know there are alternative medicine doctors and I went to one once - and she told me to use certain Essential Oils by Young Living - I used them for a while.

A. Your letter brings to mind that aphorism: What doesn’t kill us makes us stronger. Many of the strongest people I know are dealing with Lyme.

Yes, I take what I consider an integral approach to treating Lyme. An integral approach requires more than just treating with medicines and supplements. It also includes getting regular physical exercise, eating right, tending to your psychological/spiritual needs through a regular practice of meditation, prayer, affirmations (whichever practice suits you best), and finally, seriously considering your network of support including your close loved ones on out to the social systems that are available to you: your clinic, nurse practitioner, doctor, as well as the money you must generate, and/or the insurance forms you must navigate, in order to access all of the above.  

I started my treatment with antibiotics because I felt (and my doctor observed) that I had quickly devolved into a very low-functioning state. Every one of my systems was affected and going haywire. After 6 months of antibiotics, a period that I honestly find very difficult to remember, I came to a crossroads. I had reached a point where I could no longer financially afford to continue on the antibiotics. I was feeling better, but not spectacularly so. My doctor was not enthusiastic about my decision but he sympathized with my dilemma, and going on his advice that something would be better than nothing, I then prescribed myself a treatment consisting of herbal medicines and a continuation of the supplements that he had started me on. I embarked on the beginning of my second phase of treatment with some real moments of fear. However, I felt deep inside that I had no choice but to get well and although I was still unbearably fatigued after a full nights’ sleep and had many other Lyme symptoms that could have depressed me, I never, ever lost the willpower to fight and get well. I didn’t want to die, and I’m stubborn.

As the months wore on, I was finally able to put two sentences together again and resumed my work as a professional writer. I was fortunate in that way. If I’d had to go to work outside my home, I probably wouldn’t have been able to stick with the routines I had developed in order to stay on the wellness path. I required lots of sleep, little or no interaction with people outside my inner circle, long naps mid-morning, daily walks, blankets piled on my lap. I had to remember to take the supplements at their correct doses and times. And most critically, I had to have the luxury of being able to take my time on assignments. If the editors I worked for at that time had been able to see me at my computer, they would have wondered about my frequent pauses to stare at nothing, my complete spaciness and inability to stay on task! If they hadn’t been utterly disgusted by the ugly rashes on my hands and fingers, they definitely would have been put off by the stammers and slur in my speech. Luckily for me, they never knew, they were usually too busy to talk on the phone, and I was somehow always able to meet my deadlines.

I think many of us get to a point in our healing where we look into alternatives because conventional therapies either haven’t worked, they aren’t enough, or they’re simply not affordable or available. I’ve often thought that hey, if there’s something, anything, I can do to speed up this healing process, let me at it.

I’ve also read about the essential oils by Young Living and looked into them a little. At one point, someone gave me several tiny bottles of elixirs that I tried. Alternative doctors, alternative medicines, and holistic or complementary therapies are familiar terms, even to those of us who prefer Western medicine. But we often read about or hear these terms referred to without knowing or really understanding what is meant by them. We’ll explore and define these terms in subsequent posts.

All good wishes to you my friend.

Eat foods that warm you up

When the wind chill kicks in, snow falls and temperatures drop, warm up with good old fashioned thermogenesis. Some foods, when eaten, can help generate body heat. Depending on your palate, your preferences, and your ability to tolerate spices, for example, black and red pepper may appeal to you. Pepper stimulates the nervous system and your circulation.

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?


Genomes of 13 strains Lyme bugs mapped

Lyme can sure be a complicated puzzle. For example, knowing that Lyme is an inflammatory disease is one thing. But knowing what to do about that is quite another.  My personal approach often feels scattershot: add turmeric to my supplemental arsenal. Take daily doses of quercetin. Drink water, exercise, avoid sugar.  But doctors are far from being in agreement about therapies, and health websites and magazines are stuffed with pop advice. Some is helpful, some is contradictory or otherwise confusing.

But what can medical science tell us about dealing with chronic inflammation? There is actually good news in this area from a recent study.

Researchers have mapped the genomes of the 13 strains of bacterium that play the most prominent role in causing Lyme disease. This project may help us understand why a significant number of Lyme patients suffer with a chronic inflammatory response. The study may yield some answers to the problem of inflammation, an auto-immune response. More importantly, it may give us clues about what to do about it.
Apparently the discovery is exciting Lyme researchers because they have found that proteins on the surface of the Borrelia bacterium can signal the immune system by attaching to receptors on the surface of white blood cells. The white blood cells are the ones responsible for fighting off infection.
That tiny attachment triggers production of an external protein that traps and stops other white blood cells from controlling the production of antibodies. When this occurs, antibodies are churned out in large numbers, often non-specifically, which results in inflammation throughout the body.
Researchers conclude that through therapeutic intervention they may be able to detach that external protein, and thereby suppress the inflammatory response.
Here is the abstract of the article, online in the Journal of Bacteriology:

Borrelia burgdorferi
is a causative agent of Lyme disease in North America and Eurasia. The first complete genome sequence of B. burgdorferi strain 31, available for more than a decade, has assisted research on the pathogenesis of Lyme disease. Because a single genome sequence is not sufficient to understand the relationship between genotypic and geographic variation and disease phenotype, we determined the whole genome sequences of 13 additional B. burgdorferi isolates that span the range of natural variation. These sequences should allow improved understanding of pathogenesis and provide a foundation for novel detection, diagnosis, and prevention strategies.

Consider the spirochete: a minute, ancient creature. And yet it can cause so much distress. Something so tiny and simple can wreck such collosol havoc. Now perhaps the discovery of this microscopic external protein, only recently become visible to scientists, can help bring about healing.

Has Lyme changed your mind?

Every New Year's Eve I write down my goals for the New Year. Written lists have an uncanny way of materializing -- perhaps not as soon as we would like, or in the way we imagined, but all in all the act of writing down your goals for the coming year does seem to influence your ability to achieve them.

I also write down my goals for each month, putting them in a journal dedicated for that purpose only. I got my journal out today and looked it over, scanning to see the trajectory of the last five years since I've been dealing with Lyme.

My goals were strikingly immediate in the beginning, and health naturally became my number one priority. In the past they'd had everything to do with professional, financial, and relationship aims. But starting in 2005 my written goals became narrow and specifically focused on getting healthy. Common actions and abilities I once took completely for granted -- thinking clearly, talking without stammering, walking around the block, putting in a good day's work, sleeping peacefully, or waking up rested -- it all seemed very hard to imagine.

From the perspective of today, I look back at that time with more than a little fear. 'What if' questions start gathering in my head like storm clouds. What if I ever get that sick again? No matter how far behind you the illness gets, once a powerful antagonist like Lyme has twisted you like a rag and hung you out to dry, one is never the same. Revisiting my deepest wishes I'm amazed at how much faith I had managed to express. I kept my focus on positive affirmations. One month is a simple list of 10 goals, each a variation on the same theme of trust in my body's innate wisdom, in its ability to heal.

Please do not misunderstand. I'm not saying that I believe I healed from Lyme because I wrote down my goals. The point is, writing them down strengthened my resolve to work hard at healing. Going through the long dark passage of disease and emerging on the other side is one heck of a life changing experience.

The brain and all the systems of the body can be affected by the Lyme bacterial complex. But even when the brain has been affected there is hope. Further, there is the miracle of transcending brain changes and tackling new studies, such as learning a new language, an instrument or sport.

For proof and a shot of inspiration, read this New York Times article by Oliver Sacks:

This year, change your mind.