Saturday, March 10, 2012

Tip a Drink, Drop the Lyme

When it began, and I suspected, I made a promise.

No spectacle of self.

No humourous anecdotes to dilute truth.

No digitization of clumsy catharsis.

No fucking whining!

Typewriter-tired, filing cabinet, full of smudgy complaints.

But if there's another one out there - someone like me - turning to Google for solace, some dopamine-thrill and to drink the delusion of togetherness, then it would be worth it. I wish I found one.

It's different for everyone. I've been searching for the right metaphor. I keep thinking that a truly great metaphor might even be worth it. Among a few, the first:

He's the captain of a ship. Not the modern tankers or cruise ships, all luxurious within; of chandeliers and caviar, of all-you-can-eat buffets; of blowjobs and sunburns. It's a ship of wood, of sails and a few capable men. The open sea tickles his nostrils with sweet salt and the blue promise before him is invigorating. He's tasked with discovering new land, and he's absolutely confident that he will. In fact, he's been assured that he will.

But something fails. First, the sails are torn in razor winds, and the hull thins and labours against the thick sea, sick with dark mould and groaning. The rudder snaps, but he still turns the wheel as if someone were watching. There are no trees to repair the mast. No sewing kits for sails. All that is needed should have been provided.

At first, the captain gives rousing speeches - of dreams and fates forged of will, and for a while, it keeps them (him) smiling and drunk, free of all observable doubts. But deeper, he knows the island they find won't be discovery, but destiny. Not his, theirs. The ship, the man - they're symbiotes - the journey, and the success or ultimate failure of such a journey, occur at the intersection of the two.

The food grows scarce, the water too. One of the men murders another for a piece of fucking bread. The captain orders him shot. The crewman start to jump at night. More. He tells the rest they slipped, fell (tells himself). Now they jump in daylight, whatever heavy mercy they can bind to their feet. He watches the last few, their final moments, upturned faces warped in the obscurity of waves and rising bubbles, bearing mute acceptance - or silent agony. He imagines the island, or his death at sea, with surprising humour. He envisions his wrecked sanity on the shore alongside a once glorious ship, unrecognizable - all splintered timbers and collapsed decks splayed across the sand like sundered sticks. He fantasizes of wandering into the dark between the trees.

I'm stage-2 Lyme disease, or "Early Dissemination":

Digestive System:
- constipation
- diarrhea
- nausea
- extreme pain
- distention of abdomen
- gluten allergy
- dairy allergy

Visual system:
- blurriness
- floating spots
- difficulty reading
- headaches (as a result of the previous)

Auditory system:
- Hearing loss
- Pain in the ears
- ringing, roaring

-joint pain
-muscle pain
-muscle contractions, seizures
- recovery time from workouts tripled

- palpitations, arrhythmia
- shortness of breath'
- extreme chest pains

- memory loss
- confusion
- apathy
- depression (whether this is chemical or psychological is unprovable)
-extreme fatigue
Central Nervous System:
- twitching
- itching (the itchies and the twitchies as I've come to call them)
- shaking hands
- hair loss
- weight fluctuations (I will go up to 165, then drop to 150 within the same week)
- cardiac suppression
- fatigue

This list began about 4-5 years ago. Every day is different, and the manifestation of the disease will occur in the forms listed above. Some days I am asymptomatic (yay!) and its very nostalgic. As of this writing, I have emerged from a nasty flare and am nearly free of most symptoms. Ironically enough, "Herxheimer reactions," are the intensification of symptoms as the organisms die and release toxins into the blood stream. So feeling worse can actually mean getting worse, or getting better.

I've seen:

1 neurologist
2 rheumatologists
3-6 diagnosticians and internal medicine doctors at various hospitals, physical rehab clinics, and practices (one of which was using wikipedia for their diagnosis)
2 Cardiac specialists
1 interdisciplinary pain specialist

I've received the following diagnoses:
- Fibromyalgia
- Ankylosing Spondylitis
- Chronic Fatigue Disorder
- Hypothyroidism
- Bipolar Disorder
- Attention Deficit Disorder
- Arthritis (nonspecific large-joint)
- Cyclothymia

My current doc suggests I have Lyme with a co-infection called

"Babeseosis" - US mortality rate: 10% ; European mortality rate: 40%
Lyme Disease has no fixed mortality rate, it varies based on the stage and areas of infection. Stage 2 consists of some of the symptoms above. Later stages (if left untreated) can become ALS, MS, Parkinson's, Alzheimer's etc.

I've made a conservative estimate of 10-12% chance of death, and that chance reduces if the antibiotic and hormore replacement therapies are successful.   This is largely due to the fact that the Lyme suppresses my immune system while the Babeseosis spreads. It's become my understanding that this paradigm reverses as well. In addition, the attack on my thyroid by the Lyme is hurting my immune response (and causing stress - releasing cortisol to do the same). I'm confident in science and technology, however, the extreme politicization of the disease has prevented any serious R&D from occurring. If I make it past 3 more years, that percentage should reach 100% with emerging tech. I'm confident that I will survive, but acknowledge there is a small chance.

Despite the long and shitty road leading to this also very shitty point, I'm optimistic on the subject of my survival, and intend on exhausting any means necessary to do so.

If you're reading this, and you have Lyme Disease, don't be disheartened. The CDC is giving it some real cred, and there are new diagnostic tools available (in the US) that can get this diagnosis rolling for you definitively. Check out ILADS for more information in google. If you're feeling like what I describe up there, and you're an outdoorsy person, it's entirely possible you've been infected. They estimate there are more than 300, 000 new cases every year in the US. Don't waste your time fucking around with ham-handed diagnoses of self-righteous doctors. If they tell you it's in your head, they're likely too lazy or stupid to be of any use. If they tell you its "fibromyalgia" you should be equally concerned - because that's what I've come to call "fake pain disease." Each specialist has a particular hubris - Neurologists see neurological problems, and cardiologists see cardiac problems. Be an advocate for yourself and don't swallow their bullshit. Do whatever it takes. If you'd like more information, feel free to contact me at

post-edit, August 2013: I am in full remission, and am loving life again. Thanks are due to my friends and family, and Dr. Banner (no joke, that's the actual name). 

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