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

Dec 2010

Merry Christmas

Dear Reader,

May your neighbors respect you, trouble neglect you, the angels protect you and heaven accept you!

May you have a peaceful holiday.

Good wishes for your full recovery,
Suzanne

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I'm Dreaming of a Healthy Christmas...

Just like the ones I used to know.

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."
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New Lyme test for neuro symptoms

Like you, I've devoted a lot of my time and energy to figuring out how on earth to get better. "Be well" is my mantra, and I'm sure I'm not alone here. So when someone points me in the direction of research that's being done in the name of Lyme testing, I'm all ears. Here is something you might be interested in hearing more about as well: a new test for Lyme disease.

As we know, many people sick with a Lyme infection are routinely dismissed by medical doctors who aren't trained in diagnosing or treating Lyme as "crazy," or at best, "exaggerating." This type of reductive response from medical professionals can really sting. Nothing like being kicked while you're down, and from the very people you have turned to for help. I know how it hurts, and I've experienced firsthand the fearsome mental disorientation that this disease can cause.

I remember hearing my (deceased) father clearly saying my name. I jerked my head in the direction of his voice, fully expecting to see him standing next to me.  I remember hearing the phone ringing, ringing, ringing, and each time I picked up, a little girl on the other end pleading to talk with someone whose name I did not know, someone who she swore lived there. I recall sitting in a chair all day for one entire day, afraid to move, practically afraid to breathe, for fear that movement would make the utter despair I felt inside even worse. It felt like standing, during an earthquake, on the brink of insanity, where even one small tremor would send me tumbling into the chasm below.

But I wasn't crazy. I had Lyme. I had an infection that was affecting my brain, and that's all. And I have gotten better. I continue to heal, and of course that is also my deepest desire for you. So what about this new test?

Evidently, there are neurological manifestations that have non-neurological root causes.  It is important that doctors understand this when dealing with patients who present with neurological difficulties and challenges.  The new Lyme test is capable of assessing whether someone has had "an immune response to the Lyme disease bacterium Borrelia burgdorferi and whether the infection is currently active."

The test has been developed by Pharmasan Labs, Inc. in collaboration with NeuroScience, Inc.

From their website:

NeuroScience, Inc., by virtue of its name, has its foundations built on understanding the nervous system. Our understanding of the nervous system has led us to a point where, from a biochemical point of view, we must further consider the role hormones, cytokines, and neurotransmitters play, not as the messengers of individual systems, but rather as parts of a much larger picture. Our goal is to embrace a more global perspective on health that incorporates facets of neurology, immunology, and endocrinology. This newly emerging field has been defined as “neuroimmunology” and it forces us to rethink our approach to health and disease. Our adoption of the principles of neuroimmunology have resulted in an expanded menu of laboratory services that now include a wide spectrum of neurological, endocrinological, and immunological markers.

There are a lot of big words in that paragraph. Don't let them put you off. I think this test, this lab, may be onto something very important here. I'm looking forward to talking with their scientists very soon. Stay tuned for an interview, and meantime read up about their new Lyme test (and how you might use it), on their website.

Be well.
Think positively.
We can get better.



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