Lyme Lives Here

What do you see as you look at this image? A healthy, vibrant man peering out from friendly blue eyes? Too many times we rely solely upon our perceptions to inform us about reality. An amalgamation of characteristics digested collectively may provide a skewed projection. As many of you may already know, my friend Patrick has Lyme disease. The myriad of symptoms flanking his photo provide only a snapshot of the calamity flowing through our veins. 

Those who know me in person or have followed my journey online may have grown accustomed to my waxing and waning sickly appearance. A barrage of pain that nearly killed me in 2012 often manifests on my face. I want to emphasize, however, that looking sick is not requisite to live with chronic illness. Lyme disease presents as any number of symptoms which can change and multiply in a heartbeat. Whether gazing into bloodshot eyes orbited by circles or placid crystalline irises, the truth is that Lyme lives here.

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A Call For Artists

E.b. Fromkes

I’m looking to grow an inclusive community of awareness and support through my writing. I invite artists, those with Lyme as well as our allies, to send their art my way if they are interested in collaboration. I’ve found that by pairing words with visual media, the tapestry which is my experience, becomes our experience. 

I am grateful to have teamed up with artists Sebastien Millon, E.b. Fromkes, Jordan Landerman, Jennifer Bialk Scott and more so far.

For examples of what I mean by “collaboration,” check out my blog or send me a message.

E.b. Fromkes

The Doctor of Your Dreams: Things to Know

The following reflections were written by my friend Patrick Plum. Based on his observations, he has organized these recommendations for obtaining effective Lyme literate medical care. Where appropriate, I have included my observations, which are indicated in bold print. The entirety of our perspectives will be shared in two consecutive posts.

* Please note, these are solely our opinions and observations, not medical advice. If there is one thing I have learned throughout my journey toward health, it is that there is no cookie-cutter treatment that will work for everybody. Despite the confusion and frustration that navigating Lyme disease entails, I try to remember that I am the only one living in my body and therefore my inclinations toward certain treatments matter. And so do yours.

“How to Know a Lyme Literate Physican”

Doctors won’t be able to tell you they are not Lyme literate physicians, although every doctor thinks he or she is Lyme literate. Again, these are solely our opinions and observations from many doctor visits, numbering more than 500 (including Patrick and Briana) pre and post diagnosis, and having this illness awhile. 1-2 of these on a list might not disqualify them. DON’T discount their knowledge in their specialty area. Know, though, that doctors will rarely admit they know nothing about this or worse, nor do they even have any idea how little they know. It’s like the saying “someone who is sleeping doesn’t know they’re asleep until they wake up.” If doctors don’t research this extensively, it’s difficult to find out how little they know. Just because a doctor advertises that they treat Lyme disease, doesn’t mean that they have any clue.

How do we find a doctor for lyme? Is there a specialist? Not really. A common question is why isn’t there a specialist? We have specialists for many other areas. Oncologist for cancer, neurologist for nerve issues, nephrologist for kidneys, gastroenterologist for digestive, orthopedist for the bones. So, where’s the “lymologist?” These specialists have one big thing in common, all western medicine specialists and Western medicine really drops the ball with Lyme disease.

Doctors attributed my myriad of symptoms to disruption of my central nervous system due to cerebral palsy. Although I don’t believe it a worthy excuse, this was their justification for not taking additional action to determine why is my health was deteriorating. If only one of the doctors I saw had tested properly for Lyme disease, it would not have taken more than 20 years of suffering and spiraling towards death to be diagnosed.

As I’ve mentioned several times before, many western medicine doctors don’t believe in chronic Lyme disease. However, conveniently most Lyme patients I know have a slew of what “non specific” CFS, IBS, Pain diagnosis, generalized anxiety or depression, fibromyalgia…without the doctor making a connection…

Here are some basic things to watch out for:

1. If I could pick one thing to watch out for, it’s this. Calling it “Lymes.” No specialist would ever miss pronounce or misspell their specialty. Most other illnesses are named after a scientist, doctor or person that suffered it…so it’s an understandable mistake, however, it shows they haven’t done extensive research, if any. I’d consider this an almost automatic disqualification. You will not find competent medical literature that calls it Lyme’s so this means the physician has spent minimal time learning beyond what was taught in their initial medical training, which we all know is laughable and sub par. I want to reemphasize that if you’re not seeing them specifically for Lyme, don’t stop seeing them. If you’re relying on them for a diagnosis and them to solely guide you through recovery…might not happen. My dentist calls it “Lymes,” I’ll still let him clean my teeth.

2. Believe in chronic Lyme. Co Infection knowledge. A doctor can’t help you if they don’t even believe in your condition. It’s essential for them to believe in chronic Lyme and not just a simple infection. For example, most IDS, think the illness can be treated with a 21 day course of antibiotics. This can be true in the acute case when detected very early. Prolonged symptoms usually gets a patient diagnosed with something like MS, multiple sclerosis means many lesions, fibromyalgia is a combination of Greek words that essentially means muscle. No idea what causes it and no cure. This is a disservice to patients and to society as a whole.

3. They understand the limitations of testing. Additionally, they know where to go to get good testing or will consider a clinical diagnosis based on symptoms.

I was tested in 2012 for Lyme disease and my results came back negative. Little did I know at that time, there are several tests which are not valid.

Jason

Not long after I looked and actually saw him, the more blue than green Asterix of his gaze, I found myself tipping into his arms. I could label this particular autumnal morning tortuous, but to do so would be as redundant as asserting that the sun had ascended into the sky that day. For all I knew, smoldering inside my swaddle of sensory fireworks, there was only darkness. Still being coaxed and forced to eat, I begged for not another sip of liquid gasoline like a woman-child bargaining with her killer. My hourly tailspins to convince my mother not to force calories into my half dead body had resulted in nobody’s win. A few bites had skewered me into a retching neurological heap; my insides, outsides and meager shadow rippled with no. No. No. No.

As I dragged myself down the hall of the doctor’s office, a place I hovered most days like a fleeting being, I suddenly launched myself into Blue-Green’s arms. Although unsuspecting, he caught me with swift dexterity, steadying me as I pressed my bones into his torso. I didn’t care that the weight of our bodies squashed together cut like jagged glass; I didn’t care that from me wafted the smell of a human congealed in strife. Not even the admonishing attention of patients passing by registered in my primordial mind. Even if just for the most ethereal of respites, I needed him to hold me. And he obliged.

There is an uncanny bow tied between two humans as one witnesses the other cling to life. That bow becomes infinitely tighter when one human tries to save the other. And succeeds. 

Somewhere in between the layers of despair, with me sobbing shrill assertions of defeat, the stranger-Doctor and I merged and something beautiful found a home inside of me.

Jennifer Bialk Scott