Thursday, June 11, 2015

We Bought a Farm: Lyme Disease

The picture above is a picture of Isaac's back. Despite daily tick checks, Isaac obviously had one that we didn't find (or at least we didn't find it quick enough), and JB has now diagnosed him with Lyme Disease.

When JB told me that the rash we had been watching was consistent with Lyme Disease, I had a momentary period of freaking out. However, my husband spent some time educating me, and I quickly came to understand that a lot of what I feared about the disease was due to misinformation. Doctors generally do not fear this disease. But misinformed patients do.

Since I am a doctor's wife and was very misinformed about the condition, my thought is that many of you might be as well. I thought I would take a few moments in a blog post to share some facts for all of you -- so that you don't stay misinformed like me.

Firstly, Lyme disease is the most common tick-borne illness in North America and Europe. Deer ticks, which feed on the blood of animals and humans, can harbor the bacteria and spread it when feeding. Dog ticks, which are much more common in TN, do not carry the disease.

Only a minority of deer tick bites leads to Lyme disease. The longer the tick is on you, the higher your chances. 

You are definitely more likely to get Lyme if you live or spend time in grassy and heavily wooded areas where ticks carrying the disease thrive. (Like our new farm!) It's important to take common sense precautions. We have done this. If our kids go out into the woods on our farm, they wear long pants and tuck them into their socks. Grama Joni sent us a bunch of lint rollers which we use to roll up and down the kids clothes before they come into our house to try to catch any ticks right away. We also give them baths that day and do full body checks for the little buggers.

We are also getting guinea fowl here on the farm which are huge lovers of ticks and will eat the fire out of them! This will hopefully cut down a bit on ticks. Many people also simply advise not going in the woods until it is colder out. While I agree with this sentiment, we don't want our kiddos to spend half the year avoiding hiking so we hope to instead implement techniques to prevent them from sticking around if they do get on us.

Despite all the precautions, ticks can obviously still find their way into our skin and one of your kids can still get Lyme. Only the minority of deer tick bites leads to Lyme disease. Any tick bite can cause Lyme, but the longer they stay on your body, the higher your chances are.

Nine out of 10 cases of Lyme involve the telltale rash (pictured above on Isaac's lower back) which doctors call erythema migrans. It's characterized by a red ring surrounding normal looking skin. The rash can vary in size, shape, and color. Sometimes it itches or burns, but not always. It typically appears at or near the site of the tick bite one or two weeks after the bite. 

If a person is treated with appropriate antibiotics in the early stage of the disease, they are very likely to recover completely. In later stages, response to treatment may be slower but the majority of people with Lyme disease recover completely with appropriate treatment.

There are some people who obviously have terrible experiences with Lyme disease. I liken this to any disease or illness. Most people who got chicken pox when we were children, recovered with little to no problems. But some people got very, very sick. Most people who have an ear infection, respond immediately to antibiotics. But others may have additional complications pop up.

Another truth about Lyme disease surrounds the life of all medical conditions when coupled with Google and the Internet. You cannot believe everything you read online. Any person on the computer can attribute their health issues to Lyme disease, when in fact they may have never had the condition. Some people claim to have "chronic" Lyme disease even though the blood test commonly used to test for the disease found no evidence of infection. This blood test is extremely reliable, and there is therefore a good chance that these individuals did not ever in fact have Lyme disease but have simply begun to believe they did based on what Google has told them.

(Don't even get my husband or his doctor friends started on the things people claim based on one thing they read online.)

Another truth is that some Lyme patients do develop fatigue and have trouble thinking straight. But in most cases this is the result of a transient condition that actually occurs with many infectious diseases. True brain infection with Lyme is exceedingly rare and treated with antibiotics. 

Though Lyme advocacy groups often cite cases in which people with Lyme disease have died, there is almost no evidence to suggest Lyme disease is the culprit. Lyme is actually relatively benign. Unlike many other bacterial infections, patients rarely require intensive care of even hospitalization. This does not mean that people have not had very difficult things occur as the result of Lyme. It does, however, mean that this is the exception, the 1%, not the 99%.

In Isaac's case, all he has is a rash, and you actually do not even do a blood test if you have the rash, live in an endemic area (TN definitely is), and especially if you have seen ticks on you recently. You simply do a 14-day course of antibiotics and it usually clears up with little-to-no issues.

So there you have it.

Consider yourself educated.

Also, if you have kind, honest questions, please, as always, feel free to post them, and I'll have my husband answer them. :)


Anonymous said...

Thanks for the information. I have heard only the "bad" stories with excessive fatigue etc. Is there a concern with getting exposed again and having to take more rounds of the antibiotics in the future?

Wendi Kitsteiner said...

I will check with JB regarding if you get it a second time. Obviously, taking antibiotics is not a good thing and you don't want to do it so we will work as hard as we can to prevent it. But outside the increased issues with using antiobiotics, I don't believe getting it a second time poses additional issues.

Allison said...

Wendi, you state that the blood test is a very accurate diagnostic tool for Lyme disease. My understanding from discussions with my doctor is that it actually has LOW sensitivity and the assay itself is best used when spinal fluid is the matrix. Comment?

Also, I read on the internet that "tick-transmitted" diseases are the most common diseases shared via blood transfusions. Really?

Wendi Kitsteiner said...

Allison, I will ask my husband to respond to both of these questions. Stay tuned.

Tara said...

Wow…I will have to re-read this and digest it. My opinion is not the same as yours, although I do believe caught early is definitely 110% to anyone's advantage. And having the rash is a blessing! (I have always heard a much lower percent actually get the rash…). I'll refrain from explaining why my opinion is what it is since it's your child who has it and I don't want to strike fear and you ARE married to a doctor. ;) I am glad you caught it early and that he had the rash! :)

camfox said...

I say ditto to what Tara said. Our daughter was diagnosed with Lyme disease a few years ago. I'm glad Isaac is being well taken care of, and promptly! Love you Wendi.

Wendi Kitsteiner said...

Tara and Camfox -- thanks for your kind way of saying you don't completely agree :) And camfox, I hope your daughter recovered well?

One of the websites I always confirm information on (even info my husband gave me) is on Mayo Clinic's website. You will see that they parallel what I wrote:

Totally and completely bad things can happen but those are the exception not the rule. I believe most people are lead to believe that the exception is actually what most people deal with and I believe that makes people afraid to be outside.

Blessings to you both!

Wendi Kitsteiner said...

Yes, you can get Lyme Disease multiple times. Having it one time does not make your more susceptible. -- John K.

Wendi Kitsteiner said...
This comment has been removed by the author.
Wendi Kitsteiner said...

Allison, there are multiple ways to test for Lyme disease. If a person lives or travels to an endemic area, and they get the classic rash, testing is not recommended. If you need to test, there are multiple ways to do the testing. There are multiple blood tests that are available to test for Lyme disease. Spinal fluid is rarely used and is not necessarily any more accurate than the blood testing. If the patient is being tested for Lyme disease due to body-wide symptoms, they will often do a two-tier verification process that if the first test is positive, they will verify it with a second type of test. -- John K.

Wendi Kitsteiner said...

Blood transfusions can transfer diseases for sure, and that is a continued risk with blood transfusions in general. Specifically, tick-borne diseases have been transmitted via blood transfusions; however, Lyme disease (at least according to a 2003 study) has never been transmitted via blood transfusion. -- John K.

Anonymous said...

Tara, there have been a large number of people who have been diagnosed with Lyme disease when they truly had another medical condition. The "other" medical condition can sometimes be very difficult to determine. These diseases include fibromyalgia and chronic fatigue syndrome (both of which are very real conditions, and not made up) as well as numerous other chronic pain or fatigue type conditions that have yet to be fully explained. Well-intentioned, but poorly informed primary medical providers will often blame Lyme disease for any condition that is chronic and hard to diagnose relating to fatigue or muscle/joint pain. -- John K.

The Mac's House said...

We are so vigilant about ticks down here in VA. Our yard it seems no matter how much we treat it we are constantly getting ticks on us. Nymph which are the smallest and the hardest to discover are what I'm always searching for, those little buggers. We have a lot of Lone Star Ticks and Deer Ticks. is a great source for people to educate them on what they are looking for. A little guy in Izzy's class last year had the largest bullseye I've ever seen (at least 4") it was so HUGE. I've seen slight reactions on us once we have gotten off the tick but nothing horrific like that.

Any suggestions for treating lawns JB???

Anonymous said...

I live in the UK I have had Lyme Disease for 10 years.
The NHS working with the Mod is up to know good. Me thinks.
They closed the CDC unit in 2012.
But they are still in denial.

Most people seem to get bitten but they seem to not have any consept what's happening in the environment.
it seems to be a radium event.
I was bitten in my own home which backed on to a patch park at the back of my
house. A mobile phone was put near by within 6 months or so all the wildlife vanished.
I was both Electrosensitive and I caught Lyme.
Electropollution and is a major player.
But this idea that the weather has anything to do with the increase in tick.
The only link I have found.
Is the land is no longer being burnt at the end of the summer because of globe warming.
Basic sterilisation of the land and killing of vermin.
Something pest control can't do because they become immune to chemicals.
The answers simple.
The weather is not being changed by us. Other plants are temperature is increasing and this planted was
hotter in the past. It goes through cycles.
Burning the land keeps pests under control.
However Electropollution is killing bees.
And Tick preditors.