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Five Things I Learned About Lyme Disease
I know, I know, this is a diabetes blog. But those of you who follow me regularly are probably aware that a new chronic illness has entered our lives — Lyme disease. My husband was diagnosed shortly after we returned from Germany last summer, and it’s turning out to be a much more formidable opponent than we originally thought.
Here are some things I have learned:
1. The disease is named after the village of Lyme, Connecticut, where a bunch unusual arthritis cases were reported in 1975. The cause of the disease was not known until 1982 (!), when a researcher named Willy Burgdorfer identified that it was carried by ticks and involved at least three species of bacteria.
2. So it’s a pretty “young” disease in the medical world, and also a very nebulous one. To this day it appears to be chronically ignored and misdiagnosed (four doctors told my husband he didn’t have 
it, until we found a specialist who confirmed that we had a “classic case” on our hands).
3. Even with lots and lots of antibiotics (believe me, there are many and you need to take them for months on end), the challenge is to kill off the various co-infections that are also carried by ticks and very often infect people who get Lyme. Our doctor tells us that these other bacterial and parasitic {insert gagging noise} infections “serve to protect the Lyme, making it harder to kill off the core infection.”
4. Untreated, at least a first, it makes you feel like you have a horrible ongoing case of jet lag — like it’s always 3am and you just can’t “get your head together” for days on end. Or at least that’s how my husband described it. Even weeks after starting the meds, he had trouble concentrating, and sleeping, and I’ve never seen him so negative. Downright depressive, I’d say. Not the man I usually live with.
5. Health social media has worked its magic on this once-obscure and acutely isolating disease, too. Do a search on Lyme today and you will find at least a half-dozen active pages devoted to it on Facebook, and countless support forums around the web. One of the first things I did was Google the term “Lyme stories,” which yielded 724,000 hits. A Google Blog search yields almost 160,000 more. The Lyme Disease Foundation in Connecticut has even published a book of its patient story collection.
Also, a new documentary film called “Under Our Skin” is now spreading awareness, and railing at the failures of the medical establishment — in particular the Infectious Diseases Society of America, which has officially denied that chronic Lyme disease even exists. Would you believe?
I am here to tell you that this thing is for real.
And if you don’t believe me, try Amy Tan, Parker Posey, or Daryl Hall, to name a few. Every condition has its celebs, you see. I’m not sure why that’s such a comfort, but
it is.
Although you didn’t state it outright, it sounds like your husband is still trying to get the Lyme on the run for which I am very sorry. I have a weekend home in a lovely part of Connecticut where half the people are weekenders from New York City and 4 out of 5 of the locals have contracted Lyme, but when I got it I couldn’t get my NYC doctor to pay attention despite having a classic case and telling him outright that I was pretty sure I had it. He told me to go get a massage and wouldn’t bother to even test me, telling me to come back if I didn’t feel better after the massage and a week had passed. WTF? I had the worst neck ache I’d ever had, couldn’t move my head and had NO energy whatsoever – in short, I was very very sick (and yes he knows I’m a PWD too). This guy is no longer my doctor. AFter his blow off, I immediately drove to CT where the doctor who saw me knew what to do. It’s a horrible disease and if doctors in NYC, so close to areas with rampant problems aren’t dialing in I shudder to think of other areas where Lyme is recognized.
Prayers for your husband’s FULL recovery. It does ebb and flow and tests can show when it’s active. Good luck.
Posted by: saramy | February 2nd, 2010 at 11:36 amFor people who want more information about Lyme disease:
Good sources of info about Lyme disease:
Posted by: Dorothy Leland | February 2nd, 2010 at 11:56 amhttp://www.lymedisease.org
http://www.ilads.org
http://www.canlyme.com
http://www.lymeinfo.net
http://www.lymediseaseassociation.org
http://www.facebook.com/lymedisease.org
Hello,
I too brought Lyme disease home from Germany as a souvenier of my holiday there in 2007!
I think I have finally found a doctor this side of the pond who understands the disease. He is in Seattle which is quite a trek from central Alberta but since “Lyme does not exist in most of Canada” we have to travel for treatment.
I would like to add a couple more sites about Lyme disease to your list
Looking at Lyme – lookingatlymeblogspot.com
Eurolyme is also useful as they have members from across europe.
If you sign up on google alerts for Lyme disease you might be even more amazed than you are already as to how much information is available “out there”
Hang in there, you are not alone in this battle
alison
Posted by: Alison | February 2nd, 2010 at 3:32 pmHi Amy.
Posted by: xim1970 | February 2nd, 2010 at 5:26 pmI think this is a great place to post something non-diabetes related. as it affects you and your family. You’ve been a great source of information. Why not educate some others on an obscure. but frequently written about. disease? While I don’t have Lyme disease myself. I wish your husband well. as a member of the D community!
Mike C
Amy-
You can write about anything you want! It’s your blog:) i read about your husband being dx’d with Lyme Disease…hugs and prayers for the both of you. Wow, Lyme disease is a butt kicker…yikes. See of you wouldn’t have posted info about it, I wouldn’t have known.
Posted by: Cherise | February 3rd, 2010 at 9:41 pmReading your husbands post is so inspiring. Thank you for sharing your experiences so openly and honestly.
Posted by: Emily | February 5th, 2010 at 4:21 amI’m form rural PA and also suffering from Lyme. Did you know that NY has the highest number of reported cases of Lyme each year? PA is second with about 5000 cases in 2008. The CDC estimates that only about 10% are reported meaning that >50,000 a year are infected in PA. Good luck.
Posted by: Randy | February 7th, 2010 at 9:41 am