Sunday, September 01, 2013

At the Mercy of a Merciless Tick, Part II

I wrote in June about the toll tick bites have taken on my health. As the summer progressed, I realized just how much of a toll was involved. In recent years it has taken some time to adjust to the physical demands of spring and summer; after sitting at my desk or in my rug hooking chair all winter, I had to build up some stamina before I felt on top of things like lawn mowing. This year I had to face the fact that there was no stamina to be had.

There were days when my arms felt too weak to push my "personal pace" lawn mower. Even when I wasn't mowing, there were days when I struggled to walk up the slight grade on the path from my garage to the house. I've lived here 38 years--I can't even estimate how many times I've walked that path without giving it a thought. The only time I was even aware of the grade was in winter when it was icy and I was in danger of sliding down.

Every morning for the past two years I would wake up and break into a sweat. Summer, winter, it didn't matter. I keep my bedroom cool all year round, and in winter, with woodstove burned down by morning, my room was cold. Still I would sweat.

People who know about Lyme disease and its co-infections say sweats are common with both babesiosis and bartonella. Sadly, the people who seem to be the most informed about tick-borne illness are not physicians. At least not physicians within 100 miles of me. I also read that the weird rash I had last year (the one two doctors couldn't identify) looked like it might have been caused by bartonella.

People have Lyme and babesiosis. They have Lyme and bartonella. Or they can have them without Lyme. There are other combinations too. A couple more diseases are well-known Lyme co-infections, and more have appeared in the news in recent months. Ticks in the Hudson Valley area of New York, just north of us, have been found to carry encephalitis. And also in New York state, farther north, ticks have been found to carry the Powassun virus, which has a 30% fatality rate.

This summer I have had eight known tick bites (so far).

I send the ticks to a nice guy who runs a program in a neighboring county. I enclose a couple of dollars. He can tell how long the ticks were attached, and he faxes this information to my doctor. We've gotten into a routine.

At one point this summer I knew I'd been bitten before I found the tick. My right knee suddenly hurt in a specific way, and I knew. There's a certain Lyme knee pain. I've experienced it before, and it's unmistakable. I searched for a tick, found one on my foot, and requested a prescription for doxycycline. Then I found two more ticks, one in back of that right knee.

I started on the doxy, and my knee pain was gone in two days. After three weeks I felt better than I had in two years. My energy probably wasn't where it should be for a healthy person my age, but it had increased dramatically. My muscles were stronger, my breathing better. Much of the brain fog that has plagued me cleared up. Most amazing to me, the morning sweats stopped.

There's no consensus on how long one should take doxycycline. Two days . . . ten days . . . three weeks . . . a year . . . I've heard them all, and more. I took it for a total of five months in 2010 and 2011, but this time after three weeks I decided to stop. It was probably a bad decision. Doxy is hard on the stomach, and is a nuisance in other ways. You have to cover your head in the sun or your hair will fall out. You can't ingest calcium or magnesium within two hours of taking the twice-daily pill, so things like yogurt must be scheduled. I was just tired of taking doxycycline, and my improved well-being probably gave me a false sense of optimism.

I continued to feel better in the ensuing weeks. I was certain it wouldn't last, but I felt encouraged. Doxy is one of the two meds needed to treat babesiosis, and the fact that one of those meds made me feel so much better was a good sign, I thought.

Then the knee pain struck again. Hard. Once again I knew I'd been bitten, but I couldn't find it. I started back on the doxy. When I'd just about decided that the tick must be on my back somewhere, I discovered what might be a tick bite on my leg (the right one again). It took a strong magnifying glass to ID the tick. It was the smallest I'd ever seen. I've seen nymphs--many of them--but this might have been a larva.

This time the knee pain didn't go away. It improved, but it's still very much in evidence. My other symptoms came back, including the sweats. Once again, it takes some effort to do anything. The hardest part of all this is the lack of a clear plan of action. I don't know what to do. I don't know anyone who's been cured, and I haven't even read of anyone who's been cured. The last time I visited one of the online Lyme message boards, I couldn't get off fast enough. It is almost literally dizzying to read everyone's symptom lists and supplement lists, their detox programs, the amount of money they're spending on cures that never happen, the drugs that didn't work, the new drugs they're trying, the trips to Germany and Switzerland and Florida, and on and on and on and on.

There's a woman in town, much younger than I, who is escorted everywhere by her husband. She smiles at everyone, and recognizes no one. She used to be a teacher. She was popular and bright. When her dementia began, they thought it was early Alzheimer's. But it turned out to be late-stage Lyme.

We live in a "hot" area of tick activity, and I worry about my children and grandchildren. In various areas of the U.S., the ticks are gaining on us. We are weakening, and they are gaining power: power in numbers and power in the number of diseases they carry. This isn't just a problem of the northeast anymore, and government has got to address it. Money. Research. Priority. Speed.



Julia said...

Hi Susan, I'm so sorry that you are having such a hard time health wise. I sure hope that the Lyme Disease researchers do some more research on this subject before the tics gets out of control.

I hope that you'll get your strength and stamina back
I just want to give you a BIG HUG and a prayer.

Susan said...

Thank you so much, Julia! I am looking forward to the changing season, and being cozy indoors with my rug hooking. :-)

crystal said...

So scary - bad enough to have a health problem but then to have it be one that has no clear treatment/cure!

It's getting hard for me to mow the lawn too. What is a "personal pace" lawn mower? Mine is an old battered electric one

Susan said...

Toro makes them, Crystal, and Home Depot (among others, probably) sells them. Gas powered and self-propelled, sort of. That is, it won't take off by itself; you have to start walking. The faster you go, the faster the mower goes, but you do provide some of the forward motion. When you stop, it stops, and that's good for mowing awkward areas. Mine is electric start, so I don't have to do any further damage to my shoulder by pulling the cord.

Helen said...

Oh, Susan, you should submit this as an editorial somewhere. Maybe the New England Journal of Medicine. I hear about Lyme disease since it is somewhat of an issue in this area of Canada, but I never realized that it could have such a negative impact on one's health and functioning.

Eulalia Benejam Cobb said...

I do identify with you--there is so much overlap in the symptoms of Lyme and chronic fatigue syndrome. It's especially scary to watch oneself become less able to manage daily life season by season, and to realize the helplessness of the medical establishment when faced with these conditions.

Indigo Bunting said...

Helen's right. Submit this somewhere. I have to say, it's terrifying. Thinking of you...and everyone else. (Dementia from late-stage Lyme?!?!?)