Thursday, May 13, 2010


Susanne's story Part II

Can I blame Borrelia burgdorferi for all my years of sickness? I don’t think so. But it is a piece of a complicated web of mysterious illness that over the years has come to include Hoshimotos thyroiditis, chronic Epstein Barr virus (and other chronic viruses), chemical sensitivities, numerous food allergies (list still growing), chronic inflammation, joint pain, gluten sensitivity, ear pain, chronically swollen glands, inability to concentrate, short term memory issues, and more.

So when things went completely haywire last year with the symptom proliferation being crazy and beyond the scope of local practitioners I sought the help of someone outside the area. When the diagnosis came back “you have Lyme disease” it was not a huge surprise. One might think that having a diagnosis would be a relief of sorts, but it is really just another beginning to another complicated and terrifying journey into the unknown.

There is still so much that is not known about Lyme. To say that Lyme disease is surrounded by controversy is somewhat of an understatement.

In my very laypersons understanding, Borrelia burgdorferi is this incredibly adaptable organism that hides from your immune system and attacks where it is weakest to wreak havoc on you all the while thriving in your system. The organism’s adaptability and ability to survive creates a huge variety of symptoms in individuals creating a complicated web of treatment needs and options. The practitioners who are willing and able to treat the disease are the ones who listen to their patients and believe that this crazy symptom proliferation exists and are willing to work tirelessly and creatively at managing the disease all the while facing a sea of scrutiny about whether it really is Lyme disease, whether the treatments work, which tests are reliable for diagnostic purposes, and the list of controversy goes on … and on.

So having been diagnosed with Lyme, where am I exactly? Almost right where I was before with a whole new sea of information to weigh and ponder.

Most days I resort to pretending that the harsh reality of Lyme disease does not exist at all. But then I’ll have this series of days where life is spiraling downhill fast in a sea of fatigue, pain, and inability to think straight and I have to look it (Lyme) in the eyes and acknowledge it’s existence in my life, a force to be reckoned with. At night when I lay awake because I can’t fall asleep because of the pounding in my head that sometimes sounds like horses galloping across my brain and sometimes just a buzzing thumping sound I realize I can’t escape the knowledge of it.

I’ve pondered this sensation with a few docs, my blood pressure is golden, experimented with some other culprits and come up with zilch. So the weird pounding, buzzing, galloping thing, it sounds crazy but I wonder if it’s those little spirochetes putting the screws to my brain, drilling their way through my tissues looking for something new to plunder. Who knows? But it’s just another mystery among the sea of them. And I won’t fall anymore for the idea that I must be mentally ill.

But after the days of denial pass, and the awareness of reality breaks through, and I square with the idea that I have Lyme and a perilous road ahead, the question is how do I walk on?

Coming next: Part III,Walking On

Susanne, Kim's sister, is our latest SpiroChick. She also blogs at Adventures of a Soap Artist.

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