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.
We hope you'll all join us in learning about this rampant disease and the medical/financial/political morass in which Lyme patients find themselves.
Collect the complete set of diaries at LymeDiseaseAwareness
Today's diary is by UnaSpenser
Welcome back to Lyme Disease Awareness Month. On a personal note, I'd like to start the series by saying that we all might be better off if we referred to the matter as "Tick-Borne Disease Month". I know it's a bigger mouthful, but as we'll learn later on, one of the complicating factors when dealing with Lyme, or Borrelia Burgdorferi, is that it is transmitted by ticks who often share other little bugs with us, too. Lyme is just one of the many "Tick-Borne Diseases", as they're called.
Today, we'll focus simply on a brief description of Lyme Disease (to be expanded on in a later diary) and prevention. Still, its important to keep in mind as we wend our way through the sometimes challenging world of this disease, that it's almost never simple. More and more, we're realizing that doctors need to look for co-infections and auto-immune issues and that almost none of the research has taken this into consideration. So, we begin....
What is Lyme Disease?
In the Beginning
Per the CDC:
Lyme disease is caused by the bacterium Borrelia burgdorferi and is transmitted to humans by the bite of infected blacklegged ticks. Typical symptoms include fever, headache, fatigue, and a characteristic skin rash called erythema migrans. If left untreated, infection can spread to joints, the heart, and the nervous system.
Even though that description does mention symptoms and that it can spread to "joints, the heart, and the nervous system", it doesn't really bring home just how bad this really can be. Many people don't realize they've been bitten, or don't associate it with a flu-like illness, since so many things can cause a flu-like episode. Over 50% of those who get Lyme, never had or saw the defining rash. So, by the time they're going to the doctor, they're past the early stage. Its what happens to these patients that makes it so very important to do all that you can to prevent getting a tick bite. When you don't get diagnosed and treated quite early, the disease can spread.
Very Soon Thereafter
This is called Late Disseminated Lyme Disease". The Columbia Lyme and Tick-Borne Diseases Research Center gives a fuller description:
If not caught early, the infection may then spread to many other parts of the body. This can occur over a period of days, affecting the central nervous system (brain), the peripheral nervous system (nerves), the cardiovascular system (causing pericarditis and/or 2nd or 3rd degree heart block and possible death if not treated immediately), the liver (causing mild hepatitis), the eyes (causing conjunctivitis). and the muscles and joints (causing migrating swelling, tenderness, and/or pain). The typical constellation of symptoms associated with disseminated Lyme disease may include severe fatigue with a need for naps during the day, low grade fevers, muscle and joint pains, sleep disturbance, irritability, headaches, light or sound sensitivity, sharp stabbing or shooting pains, and/or numbness and tingling.
Getting a better sense? A key phrase here: "This can occur over a period of days." Remember this when anyone tells you to wait for test results before getting treatment. We'll talk about tests and discussions of prophylactic treatment in a later diary. Until then, let this seep deep into your brain.
"This can occur over a period of days."
Yes, It Can Get Worse
If the disease is allowed to keep on keeping on - because the patient hasn't been diagnosed or treatment has been ineffective - it can lead to "Late Neurologic Lyme Disease".
You need to read the entire description on Columbia's page, but here are some symptomatic highlights:
cognitive problems: short-term memory, verbal fluency, slower speed of thinking, "Brain Fog", may manifest as dementia, confusion and/or severe psychiatric disorders, chorea, cerebellar ataxia, and/or seizures, similar to the manifestations of multiple sclerosis, irritability, easy tearfulness, anxiety, and depression, obsessive compulsive disorder, paranoia, auditory/visual hallucinations, full blown mania, sleep disturbances, sensory hyperarousal most often affecting hearing and/or vision....
You getting it now? This thing can become devastating. And every patient can manifest a different set of the symptoms. For instance, I have seizures, but I don't have swelling of the joints. I have joint pain, but no swelling. Plus, you can lapse in and out of symptoms. Some days I can't come up with a noun to save my life. Other days, I'm as verbally fluid as usual. (I wonder if my friends might prefer my verbally challenging days...) Some days I can walk around, other days my whole body feels like one giant Charlie Horse and I can't move for hours. The point is, you don't want to mess around with this. So, do whatever you can to prevent getting it. 'Cause we're not even talking, yet, about the fact that there are medical controversies swirling around this disease and that while you're dealing with all these symptoms you find yourself having to navigate something you'd struggle to navigate in the best of times unless you were a medical doctor or scientist.
We're clear, right? Prevent, prevent, prevent. Just. Don't. Go. There.
Yikes! How Do I Prevent That Nightmare?
There are 3 basic aspects to prevention:
- Avoid tick habitats
- Don't let ticks on your skin
- Check for ticks every day/exposure and remove them before they bite.
What is a tick habitat? Again we refer to the CDC:
* Ticks prefer wooded and bushy areas with high grass and a lot of leaf litter. These are areas to avoid.
* Take extra precautions in May, June, and July. This is when ticks that transmit Lyme disease are most active.
* If you do enter a tick area, walk in the center of the trail to avoid contact with overgrown grass, brush, and leaf litter.
* Ask your local health department and park or extension service about tick infested areas to avoid.
Please note that ticks don't know squat about what we call months. They don't actually wait for us to turn the page of a calendar and then celebrate May Day with us. They are attuned to temperatures. Warmer winters mean longer tick seasons. Look at this February 11th entry on a blog from Wenatchee in the Cascade Mountains:
FYI, tick season is here.They're early, but the little buggers are showing up on our dogs.
I've been seeing a lot of this chatter this year. If your daytime temperatures are over 40 degrees, it's tick season.
And, hey, don't assume that "wooded and bushy areas" means the countryside. What many of us learn, eventually, is that almost everywhere is tick habitat. I live in Boston. In the city. I have a dog. We walk in a park nearby. Our beloved Arnold Arboretum. We bring home ticks. I picked up Lyme Disease. And Rocky Mountain Spotted Fever. And... and... well, anyway, parks and gardens count. The California Lyme Disease Association puts it well:
Tick density is linked to local microclimate, flora, and fauna and can vary dramatically from one spot to another even within a single yard.
People have acquired Lyme Disease in New York City:
Recent findings have shown that up to 94% of new infections among NYC residents were acquired while they were traveling outside of the City
Which means that 6% of those people had not traveled outside of the city.
By the way, you're not safe just because you're not in the Northeastern United States, either. Lyme Disease has been reported all 50 states and:
Lyme disease has been found on every continent except Antarctica. It is found all across the United States, with a particularly high incidence in the east, midwest, and west coast. It seems to be spreading.
Ok. Ticks are just about everywhere. Most of us aren't going to stay locked up inside all the time. We need to know how to deter ticks from getting onto us and what to do if they do.
Keep them off your skin:
* wear long sleeves, long pants and tall socks.
* wear light colors so that you can more readily see them and swipe them off
* use spray your clothing and any exposed skin with insect repellent. Unfortunately, these guys are impervious to a lot, so Deet or Permethrin is recommended.
Even after all this, you should always do a full body check after any exposure. They can crawl around awhile before attaching and you're much better off getting rid of then before they do. Also check any pets that have been outside. Have someone else go through your hair.
OMG! What If I Find One Attached To Me?
I think we've covered enough for today. It's a lot to take in. And the "what if I've been bitten" question walks us right into the foyer of the grand arena of dissenting medical opinions. Let's save that for the next diary.
If you've been bitten, you can see what I've said about getting tested on my blog. We'll talk about it more here next time.
Until then, may you be tick free.
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