Saturday, December 23, 2006

Happy Solstice

I hope everyone's having a lovely holiday season (whatever one it is that you celebrate).

Tuesday, December 19, 2006

How Do I know its Lyme? (Part the third)

When I got back from dogsledding, I got a call from DR. He had that voice they get when they're delivering serious news--I think its the voice we all must use when we don't know how the listener will take something.

DR "Aaah, we got your bloodwork back"

ME "Yeah? okay.

DR "Well, it looks like its postive." pause while it sinks in

ME "No shit? huh. "

DR "I think you should come in to my office where we can talk about it" He's a really nice guy and his tone was very compassionate. I was just nonplussed.

ME "Yeah. I guess so. Huh. Positive? No shit?"
I don't think I've ever had a definitive positive blood test for anything.

DR "And you tested positive for erlichiosis"

ME "Really? No shit? Huh."

I don't come off as my articulate best in this conversation.

The rest of the conversation was a variation on this theme--My bloodwork was positive AND I tested for an old infection AND I tested positive for erlichia which is another tickbourne disease so at some point I had, for sure, been bitten by a pretty sick tick.

I was not as devastated as I could have been. I've been dancing with this for too long. Nor can I really get my hopes up that the antibiotics are going to work some miracle. I've had too many doc's say to me "Oh, this will work for sure" I'd need a whole other blog to list the meds I've been on and treatments that were going to fix me.

I've gotten kind of zen about it. I can't be too hopeful because the crash is too much for me to take if it doesn't work. Been there, and it isn't pretty.

Monday, December 18, 2006

So how do I know its Lyme disease? (Part the second)

So, intrepid reader, we left off where your heroine had found herself a treatment that worked...

Well, it did. Not completely, I still had bad days, and hot weather is still a problem, but I was feeling much better.

Except, I still had cognitive problems that resembled ADD and I was still vulnerable to every virus that my kids brought home from school. And I was still taking waaay more ibuprofen than is healthy

Taking advantage of my new lease on life, I joined the local volunteer fire dept and found a new passion. I trained as a basic EMT and discovered that I love it. In the absence of children and husband and Lyme disease, I could easily see tranplanting to a major city and working in EMS. One of my aliasis is Ambulance Geek.

I love it.

Partly the thrill, partly because emergency medicine is Western medicine at its very best. I ride with my towns VFD and I road with the ambulance service out of the bigger town next to us for a bit. Sadly, Lyme interfered. Riding with both services was just plain too much for me. Lots of symptoms came back until I went back to just riding with my local service.

I also enrolled in the local Community college. I really would love to go to nursing school. Perhaps in ER nursing. Alas, yet again Lyme intereferes (hmm, this is starting to become a running theme). I suddenly started having really severe headaches. First they thought migraine then they thought trigeminal neuralgia or something called episodic hemialgia. In plain English, this means that sometimes my head hurts. Interestingly I noticed a slight facial droop on the right side of my face.

Still and all, I was feeling pretty well. Well enough that I enrolled in an Outward Bound course.
That was wonderful. I went dogsledding for a week in New Hampshire. I had spent the winter training for it pretty assiduously even though in November I had to have my gall bladder removed and we still hadn't gotten a handle on my headaches.

Just before I left on my dogsledding trip, DR called me and said that he wantedto test me for Lyme disease. I figured "what the hell" and went and got the very expensive test run and didn't think too much about it till I got back.


Saturday, December 16, 2006

So how do I know its Lyme disease? (part the first)

As I said in an earlier post, I've been going around in circles with this whatever it is for nigh on 20 years.

I first got sick in High school got somewhat better and then got sick in college.

First they said it was juvenile rheumatoid arthritis.
Then they said it was rheumatoid arthritis.
Then because my joints weren't deforming fast enough they said it was mixed connective tissue disease.
Or perhaps Sjogren's syndrome
Then they played with the idea it was multiple sclerosis or lupus or maybe even leukemia.

Except for the leukemia, there's really no definitive blood test for any of these things. For the rheumatoid arthritis, there's something called the rheumatoid factor, but that only occurs in 80% of cases. And any of these diseases would leave me crippled or dead. Woo-fucking-hoo.

So I did what any normal run-of-the-mill maladjusted 19 year old would do--I moved back in with my mom and had a nervous breakdown.

I grew up with the idea that medicine was a science. I suppose we all do from watching all those doctor shows. On the TV, you get sick, the doctor either fixes you or you die. Preferably quickly and painlessly.

It took me about two years to figure out that I was going to have to live like this. Damn. And better yet, medicine is not a for-sure thing. Most of these diseases are are diagnosed "clinically". This means you're going by the doctor's best educated guess based on a series of rule-outs and guide lines. You can go to nine doctors and get ten different diagnoses.

I have arthritic changes in my joints that are evident on xray. I have osteopenia. I have blood work that looks pretty normal most of the time except my white counts always kind of high and my platelets are often low and my hormones just look a little off. I've had most commonly ordered medical tests. The MRI's and upper and lower GI's and pvp's and more blood work and liver scans and gtt's and all the rest of it: All normal. Nothing to tell me why I felt like shit.

After a while one starts to wonder if one is just crazy. This is encouraged by the fact that the medical establishment and other people in one's life are willing to entertain the idea that one is just depressed or worse malingering. I stay the hell away from such people nowadays.

Flash forward to about 4 years ago. I'd spent alot of time learning how to cope with my symptoms. No treatments intended to cure what was now considered to be fibromyalgia, just strategies designed to help me live the best way possible. I had a job in doctor's office where summertime layoffs were common. Hot weather is bad for me symptom wise so I always volunteered for that. We lived in the South, so I just expected to be sick. I hid out in the air-conditioning and waited for the weather to turn. I had a relatively helpful doc who actually believed in fibromyalgia and prescribed the drugs that kept me on my feet.

My husband got offered a job in Vermont. I was thrilled! He took it and suddenly in the cool dry air I felt better than I had in years. I'm reminded of all those people in the 1800's who moved to Arizona 'cause the desert air was the only treatment for their TB.

After moving across country, I had to find a new doctor. I went to a couple of fibromyalgia websites and found the number of one near my new home. I'm pretty selective about docs, given the multiple baaaad experiences I've had.

This new guy passed all my criteria: Didn't keep me waiting, understood what I was talking about, wasn't threatened by a smart patient, spent time talking to me rather than whipping out the prescription pad and sending me on my way. I'd pretty much found Dr Right (hereafter referred to as DR).

In the first couple of visits, DR asked me about if I'd had my thyroid checked. Well, of course I had. Always it was "within normal limits". DR took what had to be a gallon of blood and tested not just my thyroid, but all my hormones. They were all again "within normal limits", but because DR believes in treating the patient rather than the blood tests, he thought he'd prescribe a low dose of thyroid hormone, because some of my symptoms looked an awful lot like hypothyriodism.

Two weeks after I started on the thyroid medication, I felt like a new woman! I had energy, my hand pain improved and I lost twelve pounds of water weight. I was amazed and also a little annoyed. Perhaps one of the last 25 doctors I'd seen could have tried that? But never mind, I felt better than I had since I was nineteen.

To be continued...

Friday, December 15, 2006

Feeling sentimental

Pretty good day today. Walked three miles with the dog.

Long walks are great for thinking. Since I'm prone to depression, I try to make it a habit to really notice the good things in my life. Kind of a cognitive therapy thing. So here are three really good things about my life

I want to mention how wonderful my husband Bryan is. Having Lyme is bad enough. Living with someone who has Lyme is really difficult. Over the years I have been quite ill at times and he is wonderful. We've had our problems like everone else, but this year we'll have been married for thirteen years.

I'm thrilled that I'm feeling well enough to even contemplate this kind of hike. I used to believe that I'd never be able to this.

My tooth hurts less than it did yesterday and my three mile walk didn't leave me exhausted (okay, I guess that's four)

I'm tired now--more tommorrow

Thursday, December 14, 2006

Notes on my progress

The training schedule I'm using is the same one I used to get ready for the dogsledding trip I did with Outward Bound last year. I'm starting with 30 minutes of vigorous walking every other day for the first week and weight training. We heat with wood, so I spend alot of time stacking wood anyway and we have chickens and goats--the feed bags weigh 50lbs each.

So yesterday I walked 1.6 miles in 40 minutes. My goal is to double my walking speed over the course of the winter. Eventually I want to be walking at least three or four miles daily.

I had a tooth out last week and (naturally) it got infected, so I'm on Clindamyacin for the next six weeks.

Symptom wise, I'm doing well right now. My sleep is good, and except for my tooth which hurts like a son-of-a-bitch, I'm pretty okay regarding pain. I had a rough summer with pain, but I was on a bunch of antibiotics. I really didn't know where the disease stopped and the drug side effects started.

When I first got sick, and I was presumed to have Rhuematoid Arthritis, I often thought about that. I got very little pain relief from the NSAIDS. Somehow, I always thought it must be something I was doing wriong. Why is it, in medicine, they never say "The drug is not working" but instead "The patient is not responding"?

My Lyme disease is a pretty average case except for the fact that its taken 20 years to diagnose. Oddly, the first Rheumatologist I ever saw was convinced that I had it. She said I was "textbook" in my symptoms and was pretty much set to treat me with doxy right then. Except that the ELISA came back negative. She shrugged and went back to the drawing board. At that time, she didn't even consider ordering a second test.

Wednesday, December 13, 2006

A little background.

I want to hike the Long Trail before I turn 40. I'm 38 in January, so I have two whole summers to do it before then. I'm planning to do it as a section hike, since it generally takes three weeks to do it all at once. I'm not an athlete and I've never done a long distance hike before, but the real hitch is that I have Lyme disease. I was Diagnosed in March of '06, but I've pretty much suffered from these symptoms on and off for the last twenty years.

I really, really want to do this. I've had this kind of hike on my life's to-do list for a very long time. I have the support of my doctor and the people around me. My husband suggested I keep track of my training and progress on this blog. I need to do some serious training this winter. I plan to start with a fairly standard training program and my doc referred me to physical therapy for some hip pain I've been having.

I'm contemplating soliciting for donations for Lyme research. Ask for sponsorships for a dollar a mile or something. I don't intend to get into the controversies about Lyme disease treatment--I'm not into that. What I am into is more research and a treatment that works for me and everyone else who's dealing with this.