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

The Biggest Mistake I've Made

In my quest to regain my health throughout my Lyme disease treatment.

I remember finally getting my diagnosis in November of 2014, it had been four years after becoming ill.  I had a list of symptoms you can view here:  http://brewlifewithlyme.blogspot.com/2014/10/okay-turns-out-im-not-so-well-ish.html  and a mind frame that once I killed the bacteria in me, I would be home free!  I even thought there was a cure.  Everybody has there own way of dealing with their diagnosis and so do the people close to them.  My way of dealing was to imagine those mother fuckers dying off one by one and envisioning myself moving on with my life.  So that's what I set out to do.  I found an aggressive Lyme literate doctor in Seattle who gave me massive amounts of abx in quantities that 200 pound men would take, and I asked for more.

I'm writing this because I wish I was told this from other Lymies when I began treatment.

My improvements from treatment thus far are drastic. Unfortunately, symptoms of Lyme or a co-infection are returning after roughly 4 months of getting off antibiotics.  I'll get to that.  But the number one mistake I made was to assume that everything going on in my body was because of the Lyme disease.  In a sense it was.  Without Lyme I would never have had these other diseases and illnesses.  From the beginning I assumed that with Lyme treatment all my symptoms would go away but what I discovered is that Lyme disease triggered a cascade of diseases and issues in my body that were no longer caused from the actual Lyme bacteria. These things then triggered even more symptoms that were unrelated to Lyme but easily confused with Lyme.  After going undiagnosed for 4 years many many issues arise for the genetically predisposed population of Lyme disease suffers.  For some, Lyme might be the only thing that is going on, but like I've said in the past that's highly unlikely.  If you can get to the point where you have full blown Lyme disease, there are a host of likely genetic factors taking place making things much worse for you.  It is all very very complex and there are very few medical professionals out there who truly understand it all.
Myself and my previous LLMD wasted a lot of time thinking all my symptoms were Lyme related only for me to end up finding out 2 years into treatment that I had other major issues effecting my immune system, body, and eyes. Those issues absolutely need to be diagnosed and treated in order to get well.

Part of the reality is that I didn't think I was a complex Lyme case from the beginning.  I wanted to take my meds, regain my health and share my journey in the most positive way I could. I also wanted to give those suffering hope, and enlighten others who may not know the effects of a single tick bite. I feel as though I've let you down but I also realize I'm writing my own story here.  I've had to sit back and take an honest look at my health over the last few months and I am not doing well.  I'm functioning in the world but there is not an hour in a day that goes by that a symptom isn't ailing me.  I'm still fighting for normality though and I truly know I'll get there, it just takes time.  Most with Lyme realize this but I was too far in denial to believe or admit to myself how sick I really was and the repercussion of that is now clear to me.  As an actress I started to believe my own portrayals of the healthy person I tried to project to the world.

I urge those of you beginning treatment to find an LLMD willing to look into all aspects of this illness, or find multiple doctors to treat each individual issue you may have.  It is the only way to get better from this disease.  I understand that this can be a challenge due to finances, travel distance to a competent LLMD, and the sheer fact that regular doctors have minimal knowledge on the topic.  Most docs do not understand what's going on in the bodies of Lyme patients; nor are they even willing to believe Lyme exists or is the cause of anything.  It's truly sad and damaging to the spirit but the one way I have found success in this area, is to talk.  I was able to find some people here in my new city willing to help out because I shared my experience and was referred around.  Keep sharing your experiences and stories it opens up doors and there are pharmacists, doctors, and ordinary people out there who can and will help you or lead you to someone who will.

Here's what's new with me:

I recently moved far away from my new LLMD in Canada and my amazing primary care doctor, (at a normal medical facility) who rewrites my prescriptions in order for them to be filled in the states.  This has been somewhat of a challenge for me but both docs are continuing to help out over email, Skype, and phone calls.  This does not feel safe for me right now but it is my only option at the time.

A New Disease!

I say this not with excitement

Finally after 8 years I have been diagnosed with the bubble disease.  Mast cell activation syndrome, this disease was brought on from Lyme and has a genetic component for me. You may have read about those rare people that can't leave their house due to allergies, my condition is similar.   Mcas or Mastocytosis is a rare disorder characterized by abnormal accumulations of mast cells in the skin, bone marrow, and internal organs. Mcas in myself seems to be triggered by mold exposure, chemicals, certain abx, and a number of food items.  I also have reason to believe it is triggered from something within my body.  Maybe Lyme endotoxins, yeast, or hormones.

In order to suppress the constant state of allergic response in my body I have recently begun taking:
Cromolyn Sodium in liquid form 4x a day to prevent allergic reactions and stabilize my mast cells.
Loratadine 10mg 2x a day
Zantac 1x a day.
These drugs will block all the H1 and H2 receptors and stabilize mast cells.  I have been on them for about 2 weeks and the difference is truly remarkable.
Being diagnosed with mcas is a huge step towards a positive direction in my health.  Now that my immune system is getting support, it can hopefully function better for me.
LDA injections every 2-3 months to help reduce allergens.

One of the best sources of information on mcas is here:  http://www.jillcarnahan.com/2016/10/31/mast-cell-activation-syndrome-mcas-when-histamine-goes-haywire/
Please read up if allergies and mold toxicity have been a large part of your illness or if you're a non Lymie but have chemical sensitivities or major allergens.  This disease is a lot less rare than medical establishments lead you to believe.

Lyme  Symptoms Are Back

I have been off abx for about 4 months and by the fourth month I have begun to demonstrate a multitude of symptoms that could be Lyme disease or a co-infection.
Symptoms are much stronger and intolerable the week before my period and more tolerable or gone all the other weeks.  My eyes continue to bother me daily.  Symptoms that have come back in the correct order:

--Aching knees in the evening and sometimes throughout the day.
--Burning, red eyes.  My eyes are always messed up, but they stay consecutively red for the week before my period.  They are in no more pain than usual.
--Muscle twitches in any and every muscle randomly.  Not twitches that keep twitching in the same spot.  They migrate and are very minor and painless, just annoying.
--The dreaded neurological symptoms.  Losing my train of thought, marbles in my mouth or messing up words.  Saying the wrong word.  
--It feels like things are running around under my skin.  Yeah I know, sounds weird.  Only way I can describe it.  Also heat under my skin.
--Lastly, huge lymph nodes around my neck.  A sure sign an infection is active and boy can I feel this one.  I'm pretty much knocked on my ass.

I'm not happy about this but unfortunately this is the reality of Lyme disease.  It's incurable and my immune system is obviously not ready to fight it on it's own. I still have hope after 8 years of being ill that one day it will.

Mycotoxin Illness:

I am still being treated for mold illness, although I'm off Cholestyramine.  The thyroid interruption and weight gain is not worth it right now.  I have been getting some exposure, as many buildings and homes have hidden mold.  I have taken several job offers in my new city only to quit a few days later due to the building making me sick.  It's probably the most insane thing going on in my life right now and in order for me to not lose my mind over it I remind myself that I'm really lucky to have figured this all out. There are a lot of people suffering from mold illness who will never understand it or get the help they need.  Hidden mold is my superpower.
Currently taking charcoal and rice bran for binding.

My plan: 

My LLMD wants to wait three more weeks before we talk because he says that my symptoms can tell him a lot.  I agree.  We can determine if this is Lyme or a co-infection and figure out what treatment will be needed. I will be visiting him in person in a week.

My Rant:

The problem I have here is that most people that have huge lymph nodes and a flu-like feeling get to go to a doctor, get meds, and stay home from work because they are ill and their bodies are trying to fight an infection.  But not me.  I have to put a pretend smile on, act like I'm fine, and go to work.  This is what having a chronic illness is.  I ponder if I should change my name in case I'm googled by future employers.  But you know what, I chose awareness and I get to make change happen and do something I'm passionate about in my spare time.   And that is fucking awesome!

My YouTube update video!

Never let YouTube help you with a diagnosis.

Thanks for reading!  Don't hesitate to contact with questions.

BECKY