Lyme File: The Others

I was screened for cancers and other disorders like lupus and MS. Because there are no real studies on the long-term implications of these sicknesses and treatments, being vigilant is the best you can do.

When I was in the waiting room, there was a woman there who also had leukemia. She had tested positive for Lyme and her doctors were unable to do anything for it so she was there in Dr. Burke's office. She was an older lady, irritable and punchy.

There was a woman another time who kept almost falling asleep - her mind was pretty much gone, she didn't move much. Her husband told me she had not slept in days - she had the usual menagerie of tick-borne illnesses which manifested in a sleeping disorder. She couldn't get past the first layer of sleep. As a result, she was exhausted and in this half-awake, half-sleep state.

There was an older man who came in -his entire arm was soaked with blood - he was making a joke about how he needed to lodge a complaint with the doctor because of the amount of blood he lost. As a Lymie, he knew better (or should have known better?) than to go to the ER.

Once, my Mom and I talked for several hours with a lady who thought we were Lebonieese and asked us to kill the president. Since she couldn't do much, she spent all her days watching the news. The political smears and intrique most of us can shake off or discount on our own did not compute in her brain. She believed that the president needed to die. She couldn't formula more than one thought at a time or for any given amount of time - so she repeated herself for the course of the several hours.

There was the conductor - a train conductor - who was at the end of treatment and quite bright. He must have been counting his lucky stars that he wasn't as bad as the rest of the ghosts in the room. He said he had needed a PICC but caught his stuff soon enough - a coworker suggested he see Burke. He told us how he had hit and killed three people over the course of his career. They give you two weeks off for the first person you kill, one for the second incident and then nothing after that. Not a bad learning curve.

I could never remember names - I started to remember certain aspects of people. Maybe a style of clothes or a PICC cover they had. Voices I was ok with. I was always good with sound throughout my illness. I could remember sound. Throughout the course of my treatment there were fatalities. Since we all spent so much time together - you heard about those who died.

But they never died of Lyme, according to government standards. They died of stroke, heart attack, infection from an exploded spleen.

Other Illnesses
I had a couple cancer scared during treatment - when you are so sick, with so many things going wrong, it is sometimes hard to imagine it was all caused by a couple infections. It's hard for me, as a Lymie, to actually believe how many things can go wrong because of what is called a harmless collection of rare or easy to cure illnesses.

It's different for everyone.

Being vigilant for other illness is your own protection.  You do have to start looking at lupus, MS and things like cancer. Cancer is the most common. And Burke was the first to notice something somewhat odd going on with my thyroid.

I ended up having some masses when he was checking me. Since my thyroid was already not working, there was no test that could really be given to test its function as a ruling factor. It was a tense couple days when I finally got the "all clear."

I was able to post this note in 2008.

Here is the text:

I have a ton of benign masses on my thyroid that have been causing a lot of issues. A new medication has been added to my current regiment to help the thyroid. I do, in fact, have hypothyroidism and I am healthy enough to be medicated for it.

If the masses go away, it probably won't be "rest of my life" situation. I have been pumping a ton of medications into my body and had tons of infection, then tons of dead infection, then tons of relapse infection. . .poor body feels like Big Brown on Sunday. Just doesn't have it.

I also have a strep infection so I got the hot fucia Z-pack pills to try to knock that out.

Otherwise, stuff is looking good. If everything goes as planned, I should be able to begin (again) the weening of some of these medications.

Current daily count is: 8 pills a day, 9 pills on Wednesdays.

Number of medications ingested in 07-08 due directly to Lyme: 20
(Total number between last five doctors who did not think I had Lyme: 34)

My Average Medical Costs Due to Lyme: $73,000

Oh, but, everyone gives me the stink-eye when I say "put on some Deet or bug spray before you go out."