Lyme Disease Prevention: What You Can Do to Protect Yourself and Your Children

People are talking about Lyme disease this year.  Not just the Lyme community that I connect with on a daily basis. These are normal, healthy, people and they are talking about Lyme.  I am even sensing some fear, so this is great!  More awareness which will hopefully mean more progress for those suffering and better tests that accurately diagnose.  Better treatments?  Maybe a cure!

We are rounding into the end of Lyme disease awareness month and this year I wanted to write a post about prevention.  This is a topic that many of us still need help on, including myself!  So as I am writing this I am also learning at the same time.  I am getting my information from the most accurate sources within the Lyme community.

My main basis of prevention right now is fear.  I am fearful to walk in grass, short or tall.  On sidewalks and trails I walk in the middle as often as I can.  I won't sit in the grass or on rocks.  I wake up in a panic sometimes because there is a crack in my bedroom door that leads outside, I fear ticks might get in and find me because I see deer in my backyard sometimes.

There are 4!

I am fearful of most bugs and animals that would carry ticks on them. When I see children and adults playing in fields and grass my mind immediately goes to how messed up their life would become from one tick bite. I have yet to see a tick in person and when I did years ago I wasn't even sure what it was, but if I did see one I might have a heart attack.  This fear doesn't prevent me from going outdoors and if I have to walk through short grass I will but I'll make sure to check my shoes and legs for ticks, tiny and large.

I don't think that this is too much fear for me to live with though... Nearly 8 years of my life have been consumed, taken over, and some lost from a single tick bite in a state where Lyme disease wasn't supposed to exist.  Not a day goes by that I am not plagued with some form of Lyme symptoms or reminded of what I have lost from this disease. I am contacted on a daily basis from newly diagnosed Lyme patients and the cases of Lyme and misdiagnosis are getting out of control.

So let's get on with it and talk about prevention.  What can you do to protect yourself and your children from destroying the rest of their life.

1.  Educate yourself on LYME.  (NOT LYMES)  There is so much wrong information out there about Lyme disease.  Tons and tons of wrong information.  Even from websites you think you may trust such as, webMD and the CDC.  I get my Lyme information from:  https://www.lymedisease.org/  Also from doctors who study Lyme disease two of them being:
Dr.Richrd Horowitz:
http://lymeconnection.org/news_publications/meet_the_lyme_disease_experts.html/title/dr-richard-horowitz
Dr. Daniel Cameron:  http://danielcameronmd.com/ and so should you.
For accurate information on ticks, prevention, treatment, co-infections, the "big controversy" go to this website.  Click below for some basic information on Lyme:

https://www.lymedisease.org/lyme-basics/lyme-disease/about-lyme/

Know that ticks, Lyme, and co-infections are in every state and many, many Lyme cases go undocumented because they were not reported.  I am an unreported case in the state of Washington because my ELISA Lyme test was negative.  I was also bit by a tick in Bellingham, WA in 2009 and told there was no Lyme disease or ticks in Washington by many doctors.  Many Naturopathic doctors also had little to no knowledge on Lyme disease, one lied to me.  Most of these ND's graduated from the prestigious Bastyr University in Seattle.  One in particular did not even know what Lyme disease was!  No joke.  So do not go by those silly CDC maps, clueless docs, and ELISA tests anymore.

They are bullshit. Go by this map, Lyme literate doctors, and IgeneX Lyme testing.  Doctors will most likely try to tell you that you do not have Lyme and that it is not in your state but they are wrong, uneducated and probably being paid to treat you with medicine for your newly diagnosed MS.  

I stole this from a fellow Lymie over at Lyme Warrior.  It's the most accurate I've seen.

Do not get your Lyme information from the CDC ( I should mention they follow regulations by the IDSA and their guidelines for treatment haven't been changed since 2006):  These institutions believe that Lyme disease is curable and treated in 3 months.  They are the reason why people like myself go bankrupt and die. They are also the reason why Lyme disease is typically not covered by insurance.  They are the reason why Lyme literate doctors, (the ones who actually help us) do not work with insurance companies.  LL doctors risk losing  their medical license because they prescribe antibiotics for Lyme longer than what is recommended by the CDC and save lives doing so.  The CDC and the IDSA is corrupt.  If you don't know this by now, you should.

If you want CORRECT LYME INFORMATION go to:  https://www.lymedisease.org/

This is where you can also find a Lyme literate doctor in your area if you want to be tested for Lyme using one of the most accurate tests.  We should all know by now that the ELISA Lyme test that you would get at your local doctor office will most likely come back negative.  Get tested through Igenex Lab with a trusted LL doctor.

At this point Lyme has been linked to ALS, Dementia, MS, Autoimmune conditions, Fibromyalgia, Chronic fatigue and many, many others.  There is scientific evidence out there that proves this and quite frankly I'm sick of getting into arguments over this topic.  I consider myself a lucky one because I told doctors to fuck off when they informed me I had some of the conditions noted above.  I believe those illnesses are symptoms of something else.  I'm not necessarily stating that they always end up being Lyme but regaurdless, if you are smart you'll find out what is actually causing those symptoms. Do your research, it's out there.  If you get diagnosed with anything that is often confused with Lyme you absolutely must rule Lyme out first through a trusted LL doctor or you risk losing so much more.

2)  Tick Removal

I have seen tick information and removal floating around that is wrong and scares me. This is how you remove a tick:  https://www.lymedisease.org/lyme-basics/ticks/tick-removal/  

All you need is tweezers.  No fancy twisting tools, just tweezers from the bathroom.  Grip as close to the skin and pull directly upwards.  It's done this way because the reverse barbs on the mouth of the tick get stuck easily in the skin.  If the mouth is left in your skin there is a higher infection risk.

3)  What to do after you notice a tick bite and remove it correctly?

This is the most important step you take in preventing Lyme disease and co-infections.  I would not joke around and waste time posting photos to social media.  Spread awareness later, but go get help now.  If anyone in my family gets a tick bite they are heading to a Lyme literate doctor in their area and getting treated for Lyme and co-infections for whatever amount of time suggested by their LL.  No test required.  I advise you all to do this.  Lyme disease and co-infections can diminish your quality of life greatly. Do not take a tick bite lightly.  Do not wait for symptoms or a bulls-eye rash because by then it could be too late and you do not always get a rash.  I can tell you first hand Lyme disease and co-infections are a living nightmare and you do not want what I have.  Don't risk it.  Also, take note that the information floating around that a tick needs to be attached for 24 hours before it transmits infection is bull sheeeeiit.  Again, KNOW THE CORRECT FACTS.

4)  Know the co-infections and other related conditions, such as mold toxicity and POTS.

It is highly unlikely that the tick that bites you is only carrying Lyme disease.  When we spread awareness we tend to just use the term "Lyme"  but for those of us diagnosed with Lyme we are most likely battling more than one infection.  For some it's the co-infections that are keeping us ill.  You can have multiple co-infections that are just as hard to treat as Lyme disease, if not harder.  For example, Bartonella is commonly called Cat Scratch disease it is a co-infection of Lyme but you can also get it from cat scratches or bites, ticks, sand flies, and body lice. Recent studies suggest that it can be passed from mother to child through perinatal transmission just like Lyme disease.  It is insanely common and insanely hard to treat but yet you never hear about it. Pretty scary.  https://www.lymedisease.org/lyme-basics/co-infections/about-co-infections/  

We also tend to use the term "Lyme" for all of our other infections that can range anywhere from Epstein- Barr to mold toxicity.  Like I have said a million times you never just get Lyme, your system crashes in the late stages and you get a million illnesses and diseases.  

Now the fun stuff!

5)  Protect yo-self and yo-kids.

I am buying my nieces in Ohio this get up.  Dr. Frid is the reason why you have been seeing information in magazines this year about Lyme disease.  She is a huge advocate for those of us suffering.  She created kids repellent clothing.  Here is the link to children's mesh clothing to protect them from ticks while playing outdoors.  https://www.elenafridmd.com/insectrepellentclothing

I"ll most likely be wearing someting like this for gardening, hiking, camping, fishing, anything outdoors really.

Kidding, but not a bad idea...

6)  Tick Repellent

I am just as fearful of chemicals as I am ticks so I prefer the more natural essential oil route to keep the ticks off me.  Some use those listed below on clothing and skin.  But do research and know what you are putting on your children and yourself.
DEET:  http://npic.orst.edu/factsheets/DEETgen.html
Picaridin:  http://npic.orst.edu/factsheets/PicaridinGen.html
Permethrin:  http://npic.orst.edu/factsheets/PermGen.html#whatis
I use the item below.  Although I just read eucalyptus oil is the most effective natural repellent, which this does not have. 

 

7)  What else to do for prevention??

I grabbed most my information from this page  https://www.lymedisease.org/lyme-basics/ticks/personal-protection/

-Stay away from high risk areas such as:  leaves, brush, grass and fields.

-Dress correctly:  Wear white, tuck pants in socks, spray your clothes and footwear in repellent.

-Use your repellent!

-Check for ticks after being outdoors and shower.

-Heat kills ticks so you can toss clothes in the dryer after being outdoors.

There is also a tick management handbook you can find here:  https://www.lymedisease.org/lyme-basics/ticks/landscape/  It provides information on how to prepare your landscape and chemical control  for your yard.

8) Lastly, the most important:  PETS!

As much as I hate to say it I believe our furry fuzzballs are bringing ticks indoors.  That is how I got Lyme disease.  If you have cats and dogs going outdoors they will have to be treated with some sort of protection against ticks.  Yes, there are ticks in your backyard.  They were in mine.  I really believe this is one of the main reasons there are so many Lyme disease cases.  It kills me now to think about but I used to see little black dots on Dizzy (a dog I once owned) all the time.  I would ask my then boyfriend what the hell they were;  I had mentioned ticks a few times and was disregarded.  Well I realize now that they were ticks, so gross!  Talk to your Vet about how you can prevent your pets from ticks and make sure to check for ticks after being outdoors.  If your Vet tells you that you do not need to worry about ticks and Lyme where you live (very common to hear in the Pacific Northwest)  Educate their asses and use me as an example!

Take the Lyme disease challenge  https://www.lymedisease.org/lyme-basics/ticks/landscape/

Or buy cute tanks and t's to spread awareness!

Lyme disease is garbage do what you can to avoid it.

I was caught staging my Take a Bite Out of Lyme disease photo

Educate yourself on ticks.  I wish I knew then what I know now.  Also, take the precautions.  You know them now so you have no excuses.

Be careful out there!

Becky