Lyme Disease Awareness Month: Tick Safety!

May is Lyme Disease Awareness Month. As someone who knew next to nothing about Lyme Disease before my diagnosis, I have come understand all too well the importance of awareness about this potentially devastating, but PREVENTABLE disease. There is so much misinformation about Lyme Disease! Spreading awareness about the FACTS is essential to bring down the rate of infection of Lyme Disease, which is rapidly increasing. Knowledge is power – read on to protect yourself and your loved ones!

PREVENTION

Use a Good Repellent

Lyme Disease has been reported on every continent except Antarctica. Ticks can be found just about anywhere – dense wooded areas are NOT the only places that pose a risk. Ticks can be found in the grass at parks, on the beach, in your front yard, etc. Most people know about the danger of deer ticks, but ticks can also travel around on mice and other small animals that live in non-rural areas.

picaridin

CLICK to view 20% Picaridin repellent on Amazon

permethrin

CLICK to view Permethrin clothes spray on Amazon

 

 

 

 

 

 

 

 

 

 

If you are playing outdoors, hiking, picnicing, etc, use a bug repellent that will protect you from ticks. Bug repellents with Picaridin are more effective than DEET!  If you are really getting out in the wilderness – camping or hiking for example – treat clothes and fabric gear with Permethrin spray. These repellents are reasonably priced and available via Amazon (click photos for direct links), or at fishing/camping stores.

Check for Ticks

After outdoor activities, check for ticks! Check around the edges of clothing, between toes, behind ears, in any fold/crease, in private areas, and in hair.

It is a MYTH that a tick must be attached for 24 hours in order for Lyme Disease to be transmitted. Lyme can be transmitted in minutes, and the faster you remove the tick safely, the better you protect yourself.

Here’s a handy chart of several kinds of common ticks in the United States. The ones at the bottom are as small as a poppy seed. The top two rows show the ticks as they appear during/after a blood feed.

Click to enlarge!

Click to enlarge!

 

REMOVAL

Remove Ticks Safely

pro tick

CLICK to view Pro-Tick Remover on Amazon

tick ease

CLICK to view Tick Ease on Amazon

tick twister

CLICK to view Tick Twister tweezers on Amazon

 

 

 

 

 

 

 

 

If a tick bite occurs, remove it quickly and safely! The three tick removers above all have excellent reviews and allow you to remove even very small ticks effectively. Consider purchasing one if you live in a high-tick area, do a lot of outdoor activities, have children who play outdoors, or have a pet that spends time outdoors. All of these cost between $5-$15 (a small price to pay for peace of mind!!), and are available on Amazon (click images to purchase). The Pro-Tick remover is even small enough to put on your keys or in a wallet, which is pretty cool!

It is NOT recommended to twist, crush, burn, or put any kind of lotion on the tick. Just grasp it as close to the head as possible with fine tweezers and pull firmly. ***The “Tick Twister” above recommends twisting to remove a tick. The tweezers will work without twisting, and that is preferable!!***

TESTING & TREATMENT

Get Yourself Tested & Treated

If a tick bite occurs, after removing the tick safely, the next step is to SAVE IT (see below), and contact your doctor for a Lyme Disease test. Ask your doctor for a Western Blot Lyme Disease test. Typically, the ELISA test is run first, but it is NOT RELIABLE. False negatives of the ELISA test are VERY COMMON. Insist on a Western Blot test if necessary. Many doctors will prescribe antibiotics before the test results come back. This is the safest way to go, as speedy treatment is the best way to combat Lyme Disease and prevent persistent or chronic infection.

If your Western Blot is negative, ask for a copy of it. Some tests are considered “negative” even though they are partially positive, and if this is the case with your test, you may want to consider treatment.

If you see a bulls-eye or halo type rash, ASSUME LYME INFECTION. Even if you have a negative ELISA and/or Western Blot test, assume that a bulls-eye or halo rash means you have been infected. The rash may appear minutes after a bite, days, or weeks. If you see a rash, take a photo to document it. Get to a doctor and DEMAND antibiotics. I am not kidding!! If a doctor refuses you antibiotics in the face of a bulls-eye or halo rash SEE ANOTHER DOCTOR. Head to an urgent care or ER if need be. The BEST way to prevent late-stage/persistent/chronic Lyme Disease is to be treated AS SOON AS POSSIBLE. Lyme Disease DOES NOT go away on its own, and the longer it takes for you to be treated, the more likely you are to have long-lasting complications related to the disease.

Know that the absence of a rash does NOT NECESSARILY MEAN the absence of an infection. Many Lyme Disease patients do not recall ever seeing a rash.

Get the Tick Tested

Lyme Disease testing of ticks is FAR MORE ACCURATE than Lyme Disease testing of humans, so it is a terrific way to find out if a bite has put you at risk for Lyme Disease. Save the tick in a ziploc bag with a moistened piece of paper towel. Even if the tick is broken or damaged, it can still be tested. Look up the phone number on your state’s government website for the Health Department. Some states offer FREE tick testing, and you will be not only gaining your own peace of mind, but also aiding your state in collecting data about local Lyme-infected tick rates. If tick testing is not available through your local health department, you can have your tick tested for $50 through Tick Report, a non-profit tick testing organization through the University of Massachusetts Amherst.

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I hope you have found this information helpful! Feel free to share! Knowledge is power!!

For more information about Lyme Disease and tick safety, or to find a Lyme literate physician in your area, visit ILADS.org

 

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Adventures in Neurology

As a patient with neurological symptoms from Lyme Disease, such as brain fog, memory problems, difficulty with communication/word-finding, neuropathy (nerve pain), and drooping face, I have had two MRIs of my brain to check for any damage. These MRIs were completed several months apart. The first came back normal, and the second showed some spots in my brain which could be benign, or could be cause for concern.

Back in September, I saw a neurologist in hopes of finding out if there was any cause for concern with regard to my brain health. Due to a mistake on my part, she was not able to view the images from my MRI scans, but still examined me, and asked for a full history of my illness and treatment. She then treated me to a lecture about how I couldn’t possibly have Lyme Disease anymore, after all the antibiotics I’d taken, and that remaining symptoms don’t signify remaining infection. She criticized my doctor’s treatment plan (even though that is NOT her field of medicine), suggested some rehabilitation therapy that could be helpful, and sent me on my way.

Side note: Someone should award me a medal for self control, as I have not mailed her a nasty letter with photocopies of my three POSITIVE Lyme Disease tests, taken in September 2014, January 2015, and January 2016, evidencing a continued infection…BUT I DIGRESS.

With my neurological symptoms persisting as months passed, I tried to look for a neurologist in my area who was, at the very least, not a Lyme Disease denier. My search turned up nothing, nada, zilch. Finally, I was given a recommendation from one of the doctors at the practice where I am being treated for Lyme. He shared it with the caveat that this neurologist had been “okay for some patients.” Better than nothing!

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All my documentation in hand, hoping for the best!

I went to see this “okay for some patients” neurologist a month ago, and I am happy to report that it went very well! I had with me my January 2015 & 2016 positive Lyme Disease tests, and the discs of images from both of my MRI brain scans. The neurologist was kind, attentive, and accepted my Lyme Disease test results as what they are: FACTS. There was a technical problem with one of the MRI discs, so he couldn’t get a full picture, but with what he was able to see, his examination of me, and the details of my illness that I shared with him, he concluded, “Based on all of this, I don’t see a reason to be concerned about your brain.”

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After the appointment: exhausted, but happy

At the end of the appointment, I was ready to head out the door, and my wife thought to ask, “Wait, if there isn’t something wrong with her brain, why does she continue to have these symptoms?” Great question, babe! This is why she comes to appointments with me. The neurologist explained that the Lyme Disease has done damage to my central nervous system. Because there has been nerve damage, I can and will continue to have these issues like face droop, nerve pain, etc, when my symptoms are flaring, I am tired, etc. The persistence of these symptoms does not point to brain deterioration, rather a damage that has already been done, which makes my body more likely to respond to stress, tiredness, etc through those weak areas.

This means that even after a full recovery from Lyme Disease (which I am very much hoping / fighting for!!), I may still see these symptoms pop up throughout my life when I am tired, sick, stressed, etc. Only time will tell.

But – my brain is okay!!! My brain is okayyyy!!!!!!