Tuesday, March 27, 2012

A Thousand Ughs

For the third time that I know of in the past year or two (I'm losing track), I've been infected by a tick. This could be a source of amusement, I suppose (my doctor calls me The Tick Magnet, or The Mine Sweeper), but this time I'm not amused.

This time I was bitten in the head, the least favorable site, the closest to the brain. This time the tick was attached for the maximum length of time (approximately 99 hours) before I found it. This time while the tick fed on and on I hugged and kissed and played with my 8-month-old grandson. This time, while blindly trying to remove the tick (it was on the back of my head), I managed to pop the contents of its fully engorged abdomen back into my bloodstream. Ugh. A thousand ughs.

This time, like the other times, I’m on my own, with very little confidence about what I’m doing. My doctor, an internist and very nice guy, isn't very knowledgeable about tick-borne illnesses. The rest of the local medical community (and indeed, throughout most of the U.S.) is the same. Even the infectious-disease specialists aren't on top of what is fast becoming a plague in the northeast. Last year I took what I thought was a radical step when I told my doctor I wanted to be on Doxycycline for a whole month—but then my veterinarian said, “Gee, Susan, we keep dogs on it for two months.”

This time I'm on Doxy for two months with a double daily dose. Doxy makes one highly sensitive to the sun; the first time I took it, I wasn't careful and lost a lot of hair, sunburned at the roots. Fortunately, it grew back. This time, on a double dose, I have to keep all of me covered outdoors. The double dose came from reading Dr. Joseph Burrascano’s treatment guidelines. If you even just glance at a few pages, you’ll see how complex is the issue of diagnosis and treatment. Lyme Disease websites are populated by people who seem to know a great deal about tick illness, but seem is the operative word. Some inspire more confidence than others, but I’m reluctant to blindly follow anyone's advice.

Most of the Lyme-knowledgeable people insist the only way to go is to find a Lyme-Literate MD and put yourself in his or her hands. This is what I know about LLMDs: They’re far away, they’re expensive, they prescribe some heavy-hitting (often IV) antibiotics, and they don’t accept insurance. One thing I don't know is how they got to be LL. Can any physician declare himself/herself to be Lyme-Literate? Who oversees LLMDs? Even the people who swear by their LLMDs don't seem to be getting better very quickly. I’m reluctant to invest in even the gas required to drive to one of these LLMDs without a lot more assurance that I’d get something out of it.

I just received a bottle of an anti-bacterial herb from the Rain Forest. I've read about it online, and one of my neighbors said his daughter had good results from taking it. Some say it kills the spiroketes carried by the tick; others say it simply drives the infection into hiding. Once again, who the hell knows? Directions on the bottle say to start with one drop. At least that much is clear.

11 comments:

Mali said...

A thousand ughs indeed.

That does it. Northeast US is out of contention for my end of year trip. Too many nasty bugs.

crystal said...

Yikes! Scary stuff - I hope you feel better soon and that the anitbiotics do the job. I saw this at the WSJ about the treatment of lyme diease .... http://blogs.wsj.com/health/2012/03/27/doctors-clash-over-best-treatments-for-lyme-disease/?mod=google_news_blog

Indigo Bunting said...

The tick thing is becoming scary. In Vermont, in part because of the recent heat wave, we're hearing of lots of ticks on dogs, etc., already. (Apparently this has to do with a dive in particular mouse population, in part...I'll have to look that up, maybe send it too you.)

Mali—don't let this stop you!

Indigo Bunting said...

http://www.timesunion.com/local/article/Nature-the-trickster-3419367.php

Eulalia (Lali) Benejam Cobb said...

Oh, dear, this is making me so nervous...and itchy. I've been bitten twice so far this season, and have pulled quantities off Bisou, who is low to the ground and has a thin coat that ticks adore. I've not heard of a single dog around here who hasn't had Lyme...and more humans are joining their dogs every day.

Dona said...

I remember the first time I heard about Lyme disease. I didn't believe it. We were visiting friends in Rhode Island. I still am not very careful with ticks, but have only ever had one deer tick on me that I know of.

Good luck with the antibiotics, Susan.

Susan said...

Thanks, everyone! Yes, I knew about the mouse connection--and in fact I sent a similar article to the publisher of our local paper, suggesting that they run the story (which they did). Will read the WSJ article tomorrow.

Had my hair cut today, and the stylist mentioned that a relative of hers had IV antibiotics for her tick infection. She's getting the name of the doctor for me.

Let's hope ticks stay away from us in the Northeast . . . and the rest of us remain trauma free as well. ;-)

Susan said...

PS: I read the WSJ piece tonight after all. I find it wildly frustrating that the CDC, etc. still insist that the chronic form of Lyme and its co-infections doesn't exist. Almost everyone I've met who has experienced Lyme is aware that it remains--hopefully in a dormant form--in one's system, and will reactivate if resistance is low. Lali, many people in the Lyme community believe that CFS and FMS (among other things) are manifestations of tick infections.

Susan said...

Someone left this comment on the WSJ article:

As the parent of a child suffering with Lyme disease I want to thank the WSJ for this article. We discovered a tick on our son at age 2 and the bulls eye rash arrived 2 days later. Our pediatrician prescribed 30 days of Penicillin and sent us on our way saying that all was well. For the next 5 years his behavior became more erratic and he became progressively more violent. When he entered Kindergarten he surprisingly started getting every sickness that came through. He had pneumonia 5 times in one year. We saw many doctors trying to figure out what was going on and at every one I asked if it could be related to the Lyme. Every single time I was told no. Turns out that's exactly what the problem was. We wasted so much time, energy, and money being brushed off and given every diagnosis under the sun except the correct one. Thank God for our Lyme Literate doctor. The IDSA guidelines are a joke and need to be reviewed.

Bridgett said...

Lyme-literate. So many things that doctors just aren't literate in (breastfeeding, for instance).

No ticks in the city (why?) but we head out to the country a few times a year. Mike always gets one (the big ones, not the lyme ones). With no winter...I assume we're in for a big Memorial Day tickfest.

Susan said...

I agree, Bridgett--so many things doctors aren't literate in. Eating, etc......