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CHRONIC TONIC posts on Thursdays at 7 EST, it is a place to share stories, advice, and information and to connect with others with chronic health conditions and those who care for them.  Our diarists will report on research, alternative treatments, clinical trials, and health insurance issues through personal stories. You are invited to share in comments (and note if you'd like to be a future diarist). In addition to our weekly diaries, please join us for ongoing conversations at the Kossacks Networking site.

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Already a member? Here is a direct link to today's discussion: Chronic Tonic: Stranded Wind - Misadventures with Lyme Disease

Today’s Diary By: Stranded Wind.  


Also tonight, see the Health Care Series which posts at 9 EST  - Tonight's topic:
Medical Insurance Companies Have Run Amuck...Time for a Single Payer Smack down

I probably caught Lyme disease twenty one months ago from a Lone Star tick in the Sandia Mountains.  The disease stole my consulting business, my physical health, my mental acuity, and complications from it coupled with other things nearly killed me last spring.

The blood test confirming the diagnosis came back on June 11th of 2008.  I was bitten again at Chapel Falls in Massachusetts four days later. It took two weeks to round up enough cash to see the doctor. I went just a tiny bit over a year with the infection before treatment began.

Today, nine months, three bad doctors, forty days of doxycycline, and ninety days of tetracycline away from that diagnosis I am amazingly pain free thanks to a new antibiotic regime I just started.

And I owe it all to the advice of a Kossack ... who's name I can't recall.

I didn't catch the Lone Star tick that got me in the Sandias. I think I know the day it happened. I went out to ride the tram to the crest so I could hike at the 10,000'+ altitude. I'd been doing that every day with an eye on finally seeing the summit of Colorado's 14,300' Mount Elbert. That's me on the right and my frequent climbing partners Matt and Boo on the left during an abortive attempt on the Mount Elbert summit in the summer of 2005. I'd tried the year before but was not in good enough shape. We're sitting on this trip because I've got altitude sickness. I think we're at about the 13,000' mark.

My photo labels from my time in the Sandia Mountains are not well organized but I'm pretty sure this is taken from the La Luz trail on the west face. Climbing from 7,000' to 10,000' wouldn't have been much of a challenge for me but all of my previous experience was in Colorado. I'd been spending a lot of time above 10,000' for the previous couple of weeks but the climb out got me – we started in hundred degree heat and by the time we reached 9,000' what felt like altitude sickness had me firmly in its grasp. I sat for a bit, hoping it would pass, but I finally turned back. Somewhere in all of this I think I picked up and lost a Lone Star tick, because my symptoms started very shortly thereafter. My memories of the situation are a little muddled; I ran out of water three miles short of the trailhead. I staggered back into the parking lot at the tram station dangerously dehydrated and would have called for rescue had another hiker not given me some water.

Lyme has psychiatric effects. I had just discovered The Oil Drum and I resolved to move back home with my mom and get ready for this peak oil stuff. That isn't as crazy as it sounds – there are a lot of small phone companies in Iowa, I was needing a change, and she has been talking about selling the farm. I think I was a tad paranoid but I'm glad I made the move because it positioned me to start the Stranded Wind Initiative. But that's a story for another day.

Three months later I closed my telecom consulting business. I simply couldn't focus. I'd get up at 10:00 in the morning and would have to take a nap by noon. Physically I felt awful – every joint hurt all the time, and it felt rather like the beginnings of the flu. Four months after that the effects of the Lyme coupled with a a kidney stone that had its genesis in my coming off that mountain dehydrated struck. I'd lost my health insurance, wound up on Iowa Care, and I had another mountain to climb.

My home in Iowa is in the northwest corner. The only doctors available for the poor are at the University of Iowa hospital. That's 276 miles from my driveway to the hospital parking ramp. I was mentally foggy, dead broke, the kidney stone was completely blocking my left kidney at times, spiking my blood pressure and causing a tiny berry aneurysm in my speech center to expand, mimicking the effects of a stroke.

And winter travel in Iowa can be challenging.

I wrote a good bit about what it was like to be sick and homeless under the name One Brave Kossack, which had been bestowed on me by nyceve. She was the first person from DailyKos I ever spoke to – she shared her phone number with me in the days before I made that long, dangerous trip across the state to see the doctor.

While I was in Iowa City Kossack GreenHills and I met for lunch – my first real live contact with a fellow member of this site. It was very nice to sit and eat with someone tuned in to the world and ready to accept me at face value. I was so tired of being lazy/crazy in the eyes of those around me.

The kidney stone that had been plaguing me passed without pain minutes before my lunch with GreenHills. We were meeting at the cafeteria in the University of Iowa hospital and I hand delivered the stone to bad doctor #1, Glenn Abernathy. This jackass had pretty much determined I had an opiate addiction when I came through the door and did next to no diagnostics, leaving me to later pay out of pocket expenses to narrow down what was wrong with me.

The opiate? I was taking tramadol for chronic pain from a whiplash injury in the mid nineties. I'm real sensitive to the stuff so I was cutting the smallest tablet they make in half. Oh, yeah, I'm a drug seeker. Dr. Fuckup, as I call him, also wrote that I had "a suspicious history of malingering" in my file. You who read my stream of diaries must recognize me for the layabout that I am. I look forward to malingering all over his worthless ass – if they really make a movie about my experiences in the founding of the Stranded Wind Initiative while I was sick with Lyme, which seems likely given that three different documentary makers have expressed a bit of interest, I want to make sure that part of the story gets the coverage it deserves.

I was a little better after the stone passed and I had a chance to travel to New England. I had been left with the idea that I might have a parathyroid tumor, which Dr. Fuckup speculated on but never actually resolved. A friend paid for the required tests and the results were negative. I felt better for a while, then worse, and I was casting about the net trying to find something that fit my symptoms. I settled on multiple sclerosis as the next thing to check. I worked a little bit in Massachusetts, qualified for Mass Health, and got the MS testing done – that also picks up things like chronic fatigue and other auto-immune disorders.

The doctor that ordered the auto-immune tests threw in a Lyme test and the results came back indicating that I'd had the disease but that it was better. He spent an hour telling me that the problems I was having were psychosomatic – basically a kinder, gentler version of the bullshit I got from Glenn Abernathy.

I nosed around on DailyKos and finally got some real live HELP. A Kossack in a diary I don't recall now told me that I ought to Google a bit on the disease and check out the Connecticut Attorney General's decision against the Infectious Disease Specialists Association. I came out of that search boiling mad. Part of the reason I couldn't get treatment is that the leaders of the medical specialists who would treat such a thing ARE ON THE INSURANCE COMPANIES' PAYROLL AND TASKED WITH BLOCKING THE IDENTIFICATION AND TREATMENT OF LYME!!!!!

Sorry to go all Freeper on you with the caps and exclamation points, but this is something that would get me shouting and I'd be doing some clouting if I caught any of those ISDA shitbags in a dark alley somewhere. The game is this: Lyme is probably going to be the HIV of the 21^st century – a complex, emerging disease with long, difficult treatments, and killing or disabling outcomes if mishandled.  Unlike HIV, there is no possible moral component to it, and the insurance companies are scared white by the potential costs.

Those hateful liberal Kossacks, do you know what they did?  They gave me a list of doctors so tough they could treat Lyme even in the face of the IDSA, who will go after the license of any doctor attempting to treat long term Lyme sufferers(!) That's no joke – the IDSA is a constant barrier to the detection and treatment of Lyme.

So this doctor I get, his name is Sam Donta.  You ever see the movie Pulp Fiction? Dr. Donta's approach to Lyme is very similar to how Winston Wolf 'solves problems'. You go into the office, you talk to the nurse practitioner, and then Dr. Donta comes in and solves the problem.  I talked to him for maybe four or five minutes, I'd start to tell him something and he'd instantly get it, ask the right questions to draw out all of the information, and then he wrote me a prescription and told me to check in three months from then.

I took the tetracycline he prescribed, which feels like swallowing live coals after the second week, and I nearly finished the course. I felt great, I got back to work ... and then my symptoms came roaring back and compounded themselves with the sudden presentation of arthritis like stuff in all of my large joints. I sent the good doctor a fax and two days later my medication changed – erythromycin for the Lyme and an anti-malarial called hydroxychloroquinine. What I'm told is that Lyme will hide in your cells' vacuoles. The very basic quinine compound raises the intracellular pH dramatically and stirs the little buggers up so the antibiotic can bump them off.

I was doing some additional research and fact checking as I wrote this and I've discovered the Lyme Disease Association of Iowa. I just spent half an hour on the phone with Melanie Barker, the director and a fellow Lyme victim, and I truly wish I'd had a hint that I had Lyme in 2007 as she could have saved me a lot of suffering.

I've got another fourteen weeks on my current antibiotic regimen and then I have to check in with the doctor again. Melanie and I are going to talk a bit more but it seems likely that I'm going to get a radio interview or two in Iowa regarding my experiences with the disease. I'm delighted to be in a position where I can tell my story and help others who have this terrible infection.

Upcoming Diarists:

April 2: Ellinorianne

April 9: tjb22 (uncomfirmed)

April 16: andsarahtoo

April 25: diarist needed

Please indicate in comments your interes in being a diarist ;-)

Chronic Tonic Note:  If you have Lyme Disease or know someone who does, please indicate in a  poll posted earlier today.

Originally posted to Chronic Tonic on Thu Mar 26, 2009 at 04:00 PM PDT.

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