My husband, Newbyblogger, has Lyme disease. I don’t. On the scale of his symptoms compared to some of those I’ve read about on these pages, he’s pretty high functioning. He has a full-time job. He has some aches and pains, but we are in our 50s, so we’d probably be experiencing some of those anyway. That’s part of the problem of having chronic Lyme. Everything is Lyme related, even if it might not be.
My husband works really hard and rarely complains. I forget sometimes that he even has Lyme disease. Except for the doxycycline that he is on 24/7.
From the CDC: Lyme disease
Lyme disease is caused in North America by Borrelia burgdorferi sensu stricto, a spirochete transmitted by certain species of Ixodes ticks. Manifestations of infection include erythema migrans, arthritis, carditis, and neurologic deficits. Effective January 2008, the national surveillance case definition was revised to include reporting of probable cases and to update laboratory criteria to reflect current testing practices. Between 2008 and 2009 there was a 3.6% increase in confirmed cases and 35.6% increase in probable cases. Much of the increase can be attributed to variability in surveillance practices, although evidence of true emergence exists in certain areas. Because of the burden on endemic states posed by Lyme disease surveillance, some states have modified surveillance protocols to better manage limited resources. States using modified methods, including case estimation, might report decreased case counts.
Then he’ll say something really snotty, like “Of course you remember that the turntable at home doesn’t work, that’s why I haven’t recorded any of our LPs”. Uh, ok. Turntables aren’t on my radar, we were talking about cleaning up the basement in a city 250 miles away from this turntable…where we have another turntable. I suppose I “knew” that the one here works, which is why we need to take it back to Virginia with us. So, I get snotty back. And we bicker, then drop it.
This is very much like spats that all married couples have. Then there are the comments and reminders that are different.
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May is Lyme Disease Awareness Month
Lyme is the most prevalent vector-borne disease and one of the fastest spreading diseases throughout the United States, and the subjects of diagnosis and treatment of Lyme are politically-charged.
This series of diaries is designed to provide information to the Daily Kos community both for Lyme disease prevention and for those Kossacks living with Lyme. Because the disease is often missed by physicians, these diaries may assist an individual or two in pursuing testing which might otherwise have been missed.
The Lyme Disease Awareness series is eclectic, including personal statements, informational pieces about the science of Lyme, and calls to action for community and political advocacy.
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I’ve known Newbyblogger since the mid-1990s. I was still married to someone else at the time. We used to have parties and a good mutual friend of ours brought him along to one of our parties. I never got to know him well until after I’d divorced my first husband. I called him one day out of the blue, because I hadn’t seen him in a while and I was lonely after my divorce. The rest, as they say is history. Today is our 6th wedding anniversary, so, all-in-all, I’ve known Newbyblogger for over 15 years and quite well for 8.
Newbyblogger did a stint of organic gardening in the early 90s with his brother in Westchester County, NY, not far from Old Lyme, CT. Both of them got Lyme disease. His brother’s symptoms were so bad that he became psychotic at times, imagining things and people who weren’t there. His brother was treated, unsuccessfully, but to the best of my knowledge his disease is under some degree of control because of continued antibiotic treatment. When Newbyblogger started having symptoms of Lyme, he went to a farm bureau store and bought antibiotics intended for animals and treated himself, because he didn’t have any health insurance and because all of the doctors he and his brother had been to were not helpful.
On a normal day, we do things and have conversations like any other happily married couple. We bicker, as I mentioned above. We laugh, we make plans for our future together, we have sex….but it’s all a bit different because of the Lyme disease.
One time, several years ago, he was trying a different regimen of medications to see if he could find a more successful combination. His doctor asked him if he’d be willing to try going 3 months without his antibiotics. He agreed, with a great deal of trepidation. After several weeks, it was clear that he was getting worse. He was having rages for no good reason. He would be in the middle of trying to do something and just melt down. Emotionally. Grabbing his head and crying and yelling. Not at me. Just yelling in rage and frustration because he couldn’t do something. Or couldn’t remember something.
He went back on the antibiotics and started on an antidepressant as well. Both of these things have helped a lot.
We are in our 50s as I mentioned above. Finally! No need to worry about accidentally getting pregnant. No need to worry about birth control. Or STDs. Maybe. But no one can tell us that Lyme is definitively not transmitted sexually, so we use condoms. I’ve never had to use condoms before, being a “wimmin’s libber” as my dad might say, using the pill or diaphragm mostly. But now, at age 55, I use condoms with my exclusive sexual partner.
Newbyblogger has been forgetting things a lot. Simple things, like our street address, and our zip code. He forgets the number for his cell phone and my birthday. I try not to make a big deal out of these reminders. I know it upsets him a lot. It upsets me a whole lot. But I can’t let him know that I am worried. And this has been happening a lot more frequently in recent weeks. I can’t help but think, what else might be going on with those little spirochetes in his brain?
In July, we are going to see a new LLMD. We are hoping that she’ll consider trying pulse therapy with some good antibiotics and knock these critters out permanently. But we all know chronic Lyme patients who’ve been “cured” don’t we? All 1 or 2 of them? Or maybe it was a temporary improvement. I am not optimistic that he’ll be cured. I am hopeful that things will improve. Because it’s been 15 years and in all that time, nothing has worked.
So, back to the turntable. I am balancing a lot of things, myself, so maybe Newbyblogger did mention the turntable to me and I forgot. But what’s just as likely is that he thought he did and didn’t. Then, he gets defensive. Does he get defensive because he “knows” he told me? Or because he isn’t sure? See, that’s the Lyme disease. Any other couple would just forget about it. Why would I remember a conversation we might have had any time in the past 2 years about a turntable? That’s part of the difference between men and women, too, because I just don’t retain information about certain things. I don’t need to and there’s enough in my brain, worrying about Newbyblogger and my sons that I might have just forgotten the conversation. But then, maybe it never happened. And Newbyblogger doesn’t remember. And that’s why he’s defensive. Because he doesn’t remember. Because of the Lyme disease.
REFERENCES:
1. http://www.ilads.org/...
2. http://www.lymeproject.com/...
3. http://www.psychiatrictimes.com/...
4. The emotional and behavioral symptoms caused by Lyme disease are more complex to understand than the cognitive impairments. Let’s first review the physiology of emotion. The different emotional functions have a hierarchy of circuitry, which includes stimulatory pathways, opposing inhibitory pathways, and a hierarchy of modulation centers. The basic hierarchy is pre-frontal cortex, para limbic association areas, limbic structures, and brain stems - hypothalamus. Lyme encephalopathy can result in dysfunction of the modulation centers, inhibitory pathways, and stimulatory pathways. Autopsies, animal studies, and brain imaging tests have contributed to this understanding. The presenting symptoms of NPLD are sometimes emotional in nature, and include obsessive-compulsive disorder, depression, and aggression, panic disorder, and other phobic disorders. http://www.mentalhealthandillness.com/...
ALSO FROM THE 2011 LYME DISEASE AWARENESS SERIES:
Welcome to Lyme Disease Awareness Month
The Mysterious Case of the Shape Shifting Spirochete
Researchers on Persistence In Lyme Disease
This is Your Brain On Lyme (A Personal Story)
What Do Lyme Disease and Syphilis Have in Common?
Lyme Disease Rant: The Wall of Polarization
Study Shows "immunologic abnormalities" in "Post Lyme Patients"
Lyme Disease & Antibiotics: More Than Skin Deep
Lyme: A Lament on Languishing