Well, Alright...

Opening Update:   

So I had my monthly doctor's appointment yesterday, and it went very well.  It went differently than I expected, but well.  Today marks 3 months on my antibiotic regiment, and I knew that at yesterday's appointment we were going to discuss the next course of action.  I thought she may want to switch one antibiotic out and add herbs, or switch to only herbs (I had hoped- and we had previously talked about those possibilities), but with how the last month has gone, she went the opposite direction.  I'm on board with her, I'm just a little surprised and... I don't know what- surprised.  

So I've been on Ceftin and Zithromax for the last 3 months.  Those antibiotics target both Lyme and Bartonella spirochetes (reminder that when one has Lyme Disease, they commonly have co-infections from the same tick bite.  Most of my neurological symptoms- which are most of my symptoms- are likely actually from Bartonella).  Now we're *adding* Rifampin on top of Ceftin and Zithromax, which is a cyst-buster.  If you recall, the bacteria morph and change forms in order to evade your immune system and treatment.  They form and hide in cysts.   So the Rifampin is to break those open... Should be a good time.  

Feels:  

I'm actually feeling okay about staying on the antibiotics- in that I trust this doctor, and she said that Rifampin is extremely effective and she can often discharge patients after using it.  I just don't feel well already, and I just took my first dose of Rifampin, and I'm just kind of scared to see how my body reacts.  My nervous system is already on the friggin fritz all the time and it does not feel good.  I had also mentally prepared myself for a 3-month course of antibiotics, and I think part of what got me through that decision was thinking that it would be over after 3 months and I could hopefully remove one, or both, and switch to herbs for a while.  So this decision to keep me on the two I've already been on for three months, and adding another one that made the pharm tech say "oh man" when I dropped it off at the pharmacy, is making me realize "alright, so clearly we're going the distance with the antibiotics..."  I was really excited to stop them- because of fear of the effects of long-term antibiotic use, because they're pharmaceuticals, and because they're obnoxious to take (with food, away from dairy, 12 hours apart, etc. etc.  And when I'm taking so many other things that have overlapping requirements or completely different requirements, I'm shoving pills down my throat all day, trying to stay on a schedule and make sure I'm taking everything at the right time, with or without the right food).  So I guess I'm disappointed, and scared, and bitter that I added two more white pills a day to my load instead of removing them, but I also still have hope that we're at least killing these jerks.  If how I'm feeling is an indicator of the amount of bacteria that are dying, then it's worth it.  

So yeah, the gentleman working at the drop-off counter at the pharmacy yesterday is fairly familiar with me.  Ty and I used to workout at the same gym as him so he recognized us from there, but now he sees me quite often at the pharmacy.  When I dropped off the Rifampin scrip, he looked at it and said "oh man...  Is this for you?"  Not really the comforting words that one wants to hear when they're not feeling well and yes, it is for me...  He asked if I was trying to "fight off an infection or something?"  Um yep, you could say that : - / 

Continued Update:  

January has been a whole different experience.  Previously, some symptoms were decreasing (and others were increasing), but there seemed to be more ups (that lasted longer), and less downs (which didn't last as long).  January has been an up and down battle, daily.  Every day has been different, although there are some patterns when you log my symptoms.  Literally one minute I may be in excruciating pain, and the next it's like it never happened (that's always a nice relief!).  Then I may be starting to feel well one moment, and get kicked onto my butt, with a "ha! There!" the next.  January has been more unpredictable than previous months.  I was starting to learn the patterns and cycles of the bacteria, and now things are so stirred up, it's all changing and every hour is a guessing game.  I guess it's a good thing that things are stirred up.  Something's happening.  Let me just reemphasize from my last post how rapidly I can go from not feeling well to well, or feeling well to unwell.  

As I read off my list of symptoms that I had over the last month to my doctor, she said "well I didn't hear one thing that's not absolutely classic Lyme," which was weirdly comforting.  Sometimes when a new symptom pops up, it scares the living day lights out of me- like noticing that it feels like I stop breathing when I'm falling to sleep, and sometimes even during the day that I get stuck in the exhale position and have to remind my body to inhale; and like shooting pains or aching pains in my hands when I do my favorite thing- play piano; or shortness of breath and chest pain when I do my other favorite thing- sing, or during any of my other favorite activities for that matter; or internal tremors and vibrations when I'm falling to sleep, which make me feel like I'm both buzzing and like there's an earthquake; or horrible nerve pain; or forgetting how to drive to a place I've been to many times, in a town I've lived in my whole life; or...  

The only not-comforting thing, is that I have a lot of heart-related symptoms.  My doctor really believes they're not actually from heart problems, but rather, from neurological problems- but we can't believe and hope for that, only to find out down the road that I had an unknown heart problem either unrelated to Lyme altogether, or exacerbated by Lyme, or brought on by Lyme (Lyme carditis).  So she's writing a referral to a cardiologist to get another EKG and an echocardiogram done to check things out more.  

My blood pressure was 90/50 at my appointment, which my doctor joked was an improvement from my average of 80/40 when she usually takes it...  We wonder if the symptoms I seem to feel in my chest and heart are a result of my dipping blood pressure- which may make it feel like my body/heart are playing catchup.  I hope so.  

In other news, we did more bloodwork last month, during which she ran my CD57 again, amongst other goodies.  As a reminder, the CD57 marker is not diagnostic, but is used as supportive evidence.  The CD57 is kind of a marker of overall immunity.  We want the number to be over 100, but our goal right now is 60.  When we ran my CD57 before I started treatment, my number was 14.  We want that number to go way up. When we ran it this time, it was 9.  Yikes.  Makes sense, considering how I'm feeling.  But she says that doesn't mean we're not on the right track.  It means my body is clearly under a ton of stress trying to fight this, and the "pot is stirred up."  Things are happening, but in the mean time my immune system is screaming for help and trying to stay afloat.  

So this graph is fun.  

• A CD57 natural killer cell level of about 200 is believed to be the area in which it is safe to discontinue use of a protocol without the risk of encountering a relapse.
• Even if your symptoms disappear, you should still continue with treatment until your CD57 reaches about 200 to avoid a relapse.  
• 200 is also the level where CD57 natural killer cells should naturally reside.

So anywho, this has been filled with sarcasm.  It makes me feel better about what's going on.  I'm feeling pretty well mentally at this moment, just not physically.  

Bring on February.  

The Show Must Go On

It wasn't until the last couple of spoonfuls of my soup this afternoon that I realized the strange position I had been eating in.  I felt so weak that I had been completely hovered over the bowl... Sitting up straight and bringing the spoon all the way up to my mouth felt both too exhausting, and too risky that it may spill everywhere before reaching my mouth, since my hands were so shaky.  Then I got up super slowly, and walked super slowly over to the kitchen to put my bowl in the dishwasher, because the act of standing up and beginning to walk brought a rush of light-headedness, tremors, vibrations, and my heart pounding out of my chest.  Such awesome timing, too, as I had been feeling well enough to get a bunch of stuff done all morning (although I could have gotten away with doing nothing all morning today if I had needed to), and was minutes away from heading out the door to go teach, which I needed to do.  Typical, Lyme...  Typical.

A lot of times, Tyler comes home from a trip and will say "how have you been feeling?"  Lately, my response has been "you know?  Not too bad!"  In the following days while he's home, he gets to deal with every episode during which I am not feeling too well, which has lead him to ask "why does it seem like you're worse when I'm home?  You say you're feeling 'not too bad' while I'm gone and then I come home and it seems like you're worse."  And then I realized, there are multiple reasons for this.

Firstly, Tyler does not make me worse- let's get that clear right off the bat.  Tyler makes everything in my world better.  One reason I may be worse, is because Lyme flares constantly.  That's what I need the world to understand.  I can be having a great minute, hour, day, couple of days, and then BAM- out of absolutely nowhere, I'm down for the count.  Sometimes it lingers for a minute, hour, day, or couple of days.  It. is. always. different.

Yes, I'm having more moments and days when I'm feeling much better than I was a few months ago.  I am SO thankful for that, and so encouraged by that.  But this cycle of telling him (and everyone else) I'm "feeling pretty well" and then clearly not feeling well at all is a giant reminder to myself, to Tyler, and to the world that Lyme is a freaking hot mess.  A hot mess.  It is so unpredictable and obnoxious and every other annoying word I could describe it with.  I also think it's easy to over-do it when he's home, because we do use that time to get a lot of stuff done that I've been putting off.  I probably do have more moments of feeling pretty well while he's gone, because I can get away with not doing anything when I need to.  When we have two days to get a lot of stuff done before his next trip and we run a bunch of errands at one time, I do not do well.  A lot of times I'm like "yeah!  It's go-time!  Let's go do this, then that, then that, then this..."  And somewhere in the middle I become absolutely useless.  I sit in the car while he runs into the store, then we get home and I crawl onto the couch while he prepares our meals.  Ugh.  Lyme is always the uninvited guest that shows up to the party, where everyone's heads turn and the band's music dies, and it just gets really weird...  -_-

Secondly, I realized that it's not that I don't have flares while he's gone.  It's that I judge how bad they are differently.  When I'm alone, I can feel like crap and no one else has to know- no one, if I don't want them to.  I can carry on my day, or not carry on my day, without it affecting anyone else, and without worrying about what anyone else will think.  I can tremor and hover over my soup and not feel like I'm worrying or burdening someone, choose not to go to the grocery store because I'm the only one who will face the consequences, etc.

When he's home, I always hope to be able to rise to the occasion, to be able to keep up- to go grocery shopping, to actually prepare meals, to be active, to get things done that I've likely been putting off while he was away...  And I've been falling short, almost every time, and it is so much more disappointing to have a flare when I'm with him than to have a flare when I'm by myself.

I've also realized that the moments that I feel really well, I am the freakin' energizer bunny- how I used to be the majority of the time- a go-getter, an over-achiever, obsessively clean and organized, on top of things, never stopping until I get everything checked off on my list of things to do, athletic...  These moments started getting pulled away slowly over a couple years, and I think it's hard for some people to remember that that was the most "normal" me.  I have finally recognized that when I have a list of things to do in front of me, and I don't feel like doing a single one of them, my body is begging me not to do a single one of them.  I get worse when I overdo it.

So my answer to you is the same...  How have I been feeling lately?  Depends on how you define "lately."  If you asked me at any moment other than "now," my answer would be different.  Two hours ago I was awesome and now I don't have the energy or mental capacity to get up and do anything.  Five minutes ago I was awful and now I feel like I want to run around the lake (feel like I want to, not like I'd be capable right now lol).

A couple weeks ago I had a gig at The Bitter End.  I felt pretty solid all day and was really looking forward to it.  A couple minutes before I was supposed to begin my set, I got the worst muscle cramps on the whole right side of my upper body- torso up to shoulder.  When you're performing, the show must go on, right?  No one's ever supposed to know if anything's going wrong in the performer's world- performance-related or not.  And I guess I kind of feel like it's the same in real life sometimes.  Thus the reason that when I'm alone I have a lot more "pretty good" moments, and when I'm not alone I feel the need to push through and put on a good show (note that in relation to my husband, I know 100% that I don't need to, that he will support me no matter what.  It's just the way I am, and just my way of trying to pretend like Lyme doesn't affect every part of my life I guess).

To sum up this "dear diary" post (apologies), if you were to graph how I'm feeling every moment of every day, the trend is that overall I am doing better.  I am.  I think I just need people to realize how broad of an "overall" that is.  If I tell you I've been doing better lately, that doesn't mean I'm "all better."  That means I'm feeling encouraged by the graph, and I am.  "Better" is comparative.  It means showing overall improvement.  Still a reason to be happy.




And if you're interested- I'll continue to be on this 3-month round of antibiotics until my next appointment at the end of January.  Then we make a new game-plan.

Lately I can just feel my nervous system is on the fritz.  I can feel when it's settled down, when it's flaring, and when it's about to flare.  They're the strangest, most unpleasant feelings of external tremors, internal tremors, internal whole-body vibrations...  So bizarre.

We'll keep pushing forward and hoping this overall trend continues!

Things Are Lookin' Up

I had an appointment a week ago, which was super short and to-the-point, but super encouraging.  I'd been questioning whether or not I wanted to be on antibiotics, because although no one can tell me how long I may be on them, the first course alone is 3 months.  My doctor told me it wouldn't be abnormal for me to be on them for 2 years...  Holy moly, right?

When my doctor first asked me how I felt about antibiotic treatment, I was too overwhelmed to care.  I thought "you're the doctor, I'm here to do what you recommend at this point."  Only a few days after I started them I was having second thoughts; I think mostly because the amount of white pills I consume daily is increasing and I hate that, and we all know how long term antibiotic use can affect someone.  I also wanted to be able to feel their effects, to know that they're going to do some serious business if I'm going to be taking them...  And nothing seemed to be happening.

I had been waiting to have a giant herx, which is definitely no fun- like a "having bad symptoms today?  Let's make them a million times worse!" type of thing (herxing is when you have a reaction to the load of toxins being released in your body...  When bacteria die they release toxins.  We're hopefully killing a ton of bacteria here, so I was expecting the worst).  I was still having up and down days, but nothing that I couldn't handle, nothing worse than I'd ever experienced before, and if anything, I was having more "up" moments than "down" for the first time in months.  Although I'd never wish a herx on anyone, I almost hoped I'd herx so I knew the antibiotics were doing something- so I knew that large amounts of bacteria were dying for sure.  I actually had a few days where my symptoms were almost nonexistent (almost..).  That hasn't happened in 7 months.  So what was happening?  I was confused as to why some symptoms went "poof" when my understanding was that they were supposed to get worse before they got better.  I was really thankful to have those days that I felt really well, but I wasn't sure what they meant.

So hallelujah, that my doctor believes my response means the antibiotics are doing their job.  She said a herx is something we want to avoid.  My understanding was that it was almost inevitable; apparently not.  She said herxing usually happens when you don't respond well to your treatment, or it's too much, too fast.  So the fact that my symptoms were waning meant that I'm probably on the right thing, and the right amount.  The. Best. Words. Ever.  I know that sounds dumb- I was starting to feel better and was afraid of that?  Only because I'd been told so many times that a herx was a possibility (if anything, I was told "you will herx"), and meant that the bacteria were dying.  Again, I thought it was inevitable and a good sign, even if it made me miserable.  I also know that the bacteria are highly evolved little buggers and that some treatment forces them to change forms so that they can hide- I was really afraid that was happening.  But for now I will take every moment of feeling a little bit better, and believe with every particle of my being that my response means that this is already working.

My doctor did some small tests to check out my nervous system and said that neurologically, I look a lot different than I did on day one.  She could tell things have settled down a little bit.  Woo hoo!  Let's keep that going!

I've had a little bit of a setback this week- we just moved and I overdid it.  Symptoms are creeping back in (pretty major pain and tons of internal tremors and vibrations mostly), but hopefully I'm working my way to a point where I'll be able to bounce back a little easier from things like that.  Fingers are crossed.

I have two more months of this round of antibiotics, and in a month we're likely going to keep one and switch the other out with a different antibiotic, so the bacteria don't get used to them.  Happy thoughts that things continue to go forward and not backward!

Today, I am thankful for some moments of relief- they're the beacon that remind me that I'll find the way.

Who's In Charge Here?

Who's in charge here?:  

After my last appointment, the plan was to get started on injectable antibiotics (which would get into my nervous system more effectively) and oral antibiotics.  It wasn't until I went to the pharmacy to pick these up that everything changed.  To shorten an unnecessarily long story, when I went to initially pick up these prescriptions, the total cost just for the injections would have been over $1,000.  I went home to think about it, went back in the next day to pick it up (with the help of our gracious family), and somehow they'd given me the wrong price the day before.  The new total was over $2,000 for the injections alone.  What??  How do you even get it that wrong?  And, WHAT?!  My insurance won't touch it with a ten foot pole, so it would all be out of pocket.  $1,000 was enough to stop me in my tracks and think about it.  But double that?  Just for the first 3 months of treatment?  

It wasn't a fun week for me, realizing that the one thing my doctor recommended I start with wasn't covered by my insurance, and was far too expensive for us to pay for.  How did I get into a position where I have to choose between doing what's best for my health and being able to pay the bills?  As if I wasn't already aware of how ridiculous our system is, this was a giant slap in the face.  I'm standing at the pharmacy, physically leaning on the counter because I was so weak that day, and I had to walk away from the pharmacy empty handed.  I felt betrayed by the system.  I felt like "they" didn't want me to get better.  I lost it.  

I am thankful that the options even exist for me.  There are so many places in the world where that drug wouldn't even be an option.  The injections are there, if I could find a way to pay for them.  But let's look at our system here.  The receptionist at my doctor's office told me "I know you'll hate me for even telling you this, but if you got the same drug from a veterinarian, it would be $15."  I didn't really know how to respond at first, because I wasn't sure how to compare the drug for humans vs. animals.  I said "well, what's the difference?"  He said "nothing.  They're both human grade.  The difference is the way they market it.  That's the markup for humans."  That's the markup for humans.  $45 for 3 months, or $2,000 for 3 months.  Yep, I was disgusted.  

I cannot afford to pay $2,000 for 3 months of injections.  We're looking at a minimum of 2 years of treatment.  $2,000 for just 3 months is not adding up to a great total in the end.  Although, if my health continues to decline at the same rate, we're also looking at a not-so-great outcome in 2 years from now.  So, what do we do?  

Okay then...  New game plan:  

Although my doctor said there's no alternative to the injections (there's nothing else that will do exactly what she wants those to do), of course there are oral antibiotics.  I figured it's at least a start, and I can wrap my mind around the cost of the injections until I see my doctor again in a couple of weeks.  I started two orals last Thursday evening (Oct. 30), and am taking 1,250 mg. daily between the two.  They're pretty heavy-duty.  The pharmacist made sure to ask if I knew what I was doing when I picked them up...  

This has been so much more of a mental battle than I thought it would be.  As someone who really believes in living off of the earth, treating as naturally as possible, eating/drinking organically, etc, I have a very hard time waking up and beginning my cocktail of drugs that are keeping me going.  I'm taking meds to support my adrenal function (cortisol levels are on the floor in the morning and at noon without it, and the resulting fatigue is too much to be able to function), meds to stabilize my blood pressure (average blood pressure range is 80/40-90/50 without it), two antibiotics to kill this bacteria, and a plethora of supplements.  I hate it.  If they can make me better, of course I am thankful for that.  I think the battle comes from not knowing if any of the treatment for Lyme will work.  

Right now, besides the antibiotics, the meds I'm taking are to help various parts of my body get back to functioning normally, because Lyme is wreaking havoc on them.  That's not taking away the Lyme, that's just handing me floaties until I can swim on my own- keeping body parts functioning until we get a grip on the Lyme.  To me, it's like battling Godzilla...  Godzilla's stomping on homes and buildings and ruining entire cities.  We can start to pick up the rubble in the city, but Godzilla's still out there and is just going to find other cities to destroy while we're rebuilding the ones he already destroyed.  Who's going to take down Godzilla?  There are a lot of things that we can try, but no one can tell me for sure if any of them will work.  It's all a guessing game as to what will work and when, and if.  I'm still processing that.  At my first appointment, my doctor said that if nothing else, we can hopefully prevent it from getting any worse.  

Who's in charge here?:  

As a total control freak, the lack of control is driving me crazy.  I keep telling myself that maybe that's the lesson I'm supposed to learn here.  I'm working on it.  

Lyme & Company

Thank you:
Alrighty, firstly, holy moly was I blown away and so thankful for the response I received after sharing my first post.  That feeling of genuine understanding and support is absolutely priceless, and I had no idea that I needed it.  I wrote it hugely just to say out loud to myself what I was thinking, because it was therapeutic.  I decided to share it also for my own selfish intent (so that I wouldn't have to repeat that 10 page story 100 times... ;-)) and had no idea how much I needed to.  Thank you from the bottom of my heart for listening and loving, and to many of you for sharing your experiences with me as well.  There were a lot of outcomes that I did not expect, but that I'm thankful for.

I'm blogging now?:
Secondly, just as I questioned my first blogpost, I am questioning this one.  The further down this road we go, the more anyone reading this can potentially disagree with me.  I am letting that go...  There it goes!
I also feel like continuing to blog about it could be misinterpreted as being dramatic and I definitely don't want it to sound like I'm just complaining about it (although I'm very aware that at times I might be).  But then I remembered the other purpose of this blog is to have all the information in one place, so that I can look back and remember this journey and my family and friends can follow along more easily as well.  So, from here on out, this blog is kind of a journal entry for me and an update for anyone who wants to be updated.  That way we can all keep track of and remember what's going on, if we choose to : - ):

Update:  
The last two months have been fairly uneventful.  I took two herbal tinctures to begin treatment for Lyme, then Bartonella (more on this below), and nothing really changed.  My symptoms changed, but they change every few months and the timing of them seemed unrelated to the timing of when I started each tincture.  I was continually going down hill, so my doctor has decided that after 16 years of disease and two months of herbal treatment with no sign of change, it's time to add antibiotic treatment.  She feels that injectable antibiotics may be the most effective, because they can get in to the nervous system more effectively than oral antibiotics can, and although the bacteria are everywhere, they seem to be heavily targeting my nervous system.

I'll be on oral antibiotics as well as the injections, because with Lyme & coinfections, if you use one antibiotic, it often forces the bacteria to change into the Cell Wall Deficient or cyst form, which are much more challenging to treat (as if it's not challenging enough already, geesh).  My doctor said that if someone with Lyme wants antibiotic treatment and demands only one antibiotic, they will refuse to treat the patient, because they know that using only one antibiotic can actually make things worse.

So that's where we stand.  I'll be continuing the herbal tincture and enzymes (which break down the biofilm/protective layer around the bacteria) and will likely begin the antibiotics next week.  It will be a 3-month course, then we will reevaluate and go from there.

1.  Yes, I know what prolonged antibiotic use can do to someone's body.
2.  Yes, I know that I wasn't responding to herbs.
3.  Yes, I know what not treating Lyme can do to my body.

The choices aren't super awesome to begin with.  After 16 years I'd like to kick Lyme's butt, instead of it kicking mine.  I hope this is a good start.  Obviously we will take precautions so that the extended use of antibiotics will be a positive thing and not harmful in itself.

This treatment may cause me to have a Herxheimer (herx) reaction, in which I feel much worse before I feel better.  What happens during a herx is that as the bacteria die, they release toxins which cause you to feel like poo.  I'll be detoxing as much as I can to try to avoid this reaction.  Some people react, some people don't- just like everything else with Lyme, it's unpredictable and everyone responds differently.

Lyme & Company:
Why is this post titled "Lyme and Company?"  Lyme disease is almost never alone (and by that, I mean that the causative bacteria of Lyme Disease, borrelia burgdorferi are almost never alone).  Ticks infected with Lyme are almost always infected with multiple diseases...  Bartonella, Babesiosis, Ehrlichiosis, Anaplasmosis, to name a few.  Many people with Lyme have one, two, or even all of these "coinfections."  We're not quite sure which of these decided to join Lyme at my party, but my doctor suspects that it's Bartonella that is causing most of my neurological symptoms (even though Lyme in itself causes some neurological symptoms... so it's difficult to differentiate).  Hey, thanks for joining, Bartonella.  Did you bring anyone else with you?

We're also not sure what symptoms may be permanent damage and what symptoms are from an active infection.  Time will tell.  How do we know I have an active infection?  My antibody response on the Westernblot test was positive for Lyme, my CD57 marker was 14, my history of clinical symptoms and lab tests, and my present symptoms.

My CD57 result was 14.  Healthy range is between 60-360.  This is a marker of immunity.  While it's not a diagnostic test (we already have that and clinical symptoms), for anyone who's still questioning if something's going on in my body or in my head, this is one more indicator that something is wreaking havoc on my body.  Numbers are only that low when your overall health is very poor- and the only known cause of a low CD57 happens to be Lyme.  Remember, the goal isn't to rid my body of the borrelia bacteria.  The goal is to get the CD57 number up so that my body has the upper hand and can keep Lyme under control without the use of herbs/medications.

Ending thoughts- 'bring it on, Lyme.'

Arriving at Lyme Disease

Hey everyone,

Firstly, if you're here, thank you.  I don't quite know where to start and I've been contemplating how to put everything in to words, as well as the easiest way to share updates without coming off as something I don't want to be.  Honestly, I'm shifting back and forth between hopeful and hopeless, thankful and bitter, happy and scared, coming to terms and denial.  And honestly, I think all of that's okay, and necessary.  

This blog has three purposes:  1.  Most importantly, to educate about Lyme Disease, so that you can help prevent it from happening to you or a loved one and know what to do if you ever get a known tick bite and/or the Erythema Migrans rash (bulls' eye rash), or Lyme symptoms.  2.  To tell you about my personal story, because it's a long story, and it's hard to explain.  3.  Therapy for me.  It's therapeutic to write it all out.  

So here's my story of how I arrived at the diagnosis of Lyme Disease, and some of my thoughts on it- some of them edited and some raw.  Take it or leave it, but don't start reading unless you understand that this is what's happening and this is how I feel.  I will love you no matter how you feel or what you think in return.  This is just the information that I have to give you at this time.  

In the last month since my diagnosis, I've told very few people about it.  Partially because no one has a clue what Lyme Disease is, so their reaction is "oh, okay cool."  Partially because no one has a clue what Lyme Disease is, and it's really difficult to explain (read on).  Partially because I don't like talking about myself or bringing attention to myself, and I definitely wouldn't want to come across as dramatic, attention-seeking, needy, etc.  And partially because I slip in and out of denial.  I guess 16 years of not knowing can do that to you.  

So, here goes:   


16 Years In the Making:

Summer of 1998, when I was 10 years old, my family and I went to SunRiver for a little vacation, as we often did.  I had a great time bike riding through the woods with my dad, uncle, and cousin.  We biked for miles.

Somewhere along the ride, I had a bug bite appear on my neck.  It was just a regular looking bug bite, probably a mosquito bite, and I didn't think anything of it until a few days later it developed a red bulls'-eye ring around it.  Thankfully (seriously, thank God- we'll come back to this), my mom knew that the bulls'-eye rash was an indicator of Lyme Disease from a tick bite (although that was all we knew about Lyme Disease), so she got me right in to my pediatrician.  

As was standard 16 years ago (and as is pretty much still the standard today), my doctor saw the bulls' -eye rash, known as an Erythema Migrans rash, prescribed me two weeks of Doxycycline (antibiotics), and that was the end of that. The Erythema Migrans rash is the only tell-tale sign that you have Lyme Disease.  They won't even test you for it, they just start treatment right away.  Statistics differ, but it's estimated that only around 30%-50% of people who get a tick bite that's infected with Lyme, ever develop the rash.  Thank God I had the rash so we knew right away.  Two weeks of Doxycycline was supposed to clear it up.  Man, have we ever been so wrong?  We never thought of it ever again.  


Immediately following that summer, things started changing for me.  I developed food allergies to almost everything I put in my body (anyone who went to middle school with me knows this is not an exaggeration...  I wish it was, and I wish I didn't accidentally switch lunches with Lindsay, who ended up with my weird cheese-puffs and brown baggies ;-)).  I was allergic to the glue under the new carpet at our middle school, peanuts, tree nuts, apples, peaches, avocado, cantaloupe, carrots, amoxicillin, penicillin...  To name a few.  Is this related to Lyme Disease?  I don't know.  We'll never truly know.  But it's worth noting.  

I loved playing soccer, I was a good athlete.  The summer following my tick bite I joined a club soccer team and began playing year-round.  I loved it.  I loved soccer.  Except some days I was really, really good, and some days I was in too much pain or too fatigued to keep up.  The more that happened, the more the faith that my coaches had in me decreased, and the more my confidence decreased.  I didn't know why my ankles, knees, and hips were in so much pain, when I was only an 11 year old kid.  I felt like something was wrong with me, but my teammates and coaches, and likely friends and family (no hard feelings) chalked it up to laziness on certain days (and apparently I made the decision to be a great athlete on great days?).  I kept playing because I wasn't a quitter.  No matter how much pain I was in, how tired I was, how bad my Obsessive Compulsive Disorder was, I was going to keep doing what I loved.  And I did, for a while.  

In middle school and high school, my Obsessive Compulsive Disorder spiraled out of control.  I had no control.  I've had OCD since I can pretty much remember.  Whether Lyme exacerbated it is up for debate.  I suppose it doesn't matter.  My sophomore year of high school, I decided we had to do something about my OCD.  Over the next four years or so, I was on at least six different antidepressants for OCD, because that felt like the only option- none of which, unfortunately for me, helped my OCD at all- although they have great benefits for some people.  They caused too many side-effects to begin listing.  But I think this is where things were hazy for me...  Not only because the antidepressants literally caused fogginess and memory problems amongst other things, but because I began blaming any strange symptom on the antidepressants, because I figured they had to be that.  Symptoms like feeling like I was being electrocuted when my immunity is low, dizzy/fainting spells, seizure-like episodes, etc.  

My senior year of high school, I was at school at 5:40am for choir rehearsal.  We had a concert that night so we were rehearsing on the stage in the auditorium.  I started feeling nauseous and really dizzy and shaky, so I went to go sit in the auditorium to watch.  50 minutes later, the rehearsal was over, and I thought "wow, that's weird..  I just sat down out here."  When I was leaving, my choir director stopped me and said "oh my gosh, Kristen, are you okay?"  I was so confused as to why she was so concerned (she didn't ever show concern on the day of a concert- if you were dying, you bucked it up and showed up for the rehearsal and concert).  I said "yes, I think so.  I'm just going to go home."  I remember that multiple people stopped me as I was walking out of the school- both people I knew and people I didn't know, to ask me if I was okay.  I still don't know what I was displaying to compel them to stop me.  Again, I thought that was strange but was too "out of it" to realize how strange it was and to not get in my car.  I called my mom to tell her I was going home and she asked if I was okay enough to drive.  "Yes, mom!"  10 minutes later I got in an accident.  Somewhere on the highway I slipped out of consciousness like I did in the auditorium and hit the car in front of me when traffic stopped (thank goodness there was traffic, so I was probably only going 25-30 miles per hour and no one was hurt at all).  But my car was totaled.  So that was a wake-up call.  

I had neurology appointments and an MRI and the work-up, but everything came back normal.  We were so thankful that everything was normal, yet left confused as to what in the heck had happened.  My neurologist laughed at me when I told him my symptoms before the accident and he said "I've never heard of those symptoms..."  With all due respect, sir, neither had I.  And I was scared.  But I wasn't making them up.  I didn't need attention.  I had no reason to make them up.  They happened, and I was looking for an answer and got laughed at.  The other people in my choir later told me that during the 50 minutes in which I have no memory, my head would slump down for a while and then I would sit up and wave at them...  I have no memory of those 50 minutes.  I've always assumed that episode was from the Paxil that I was on for OCD at the time...  Again, maybe we'll never truly know, but...  

Joint pain, feelings of electrocution, and smaller, but similar episodes continued through college (I stopped taking any and all medication my sophomore year).  I could handle the pain (it's been daily since I was 10) and the strange sensations (so many symptoms were daily occurrences that I'd adapted to them.  I had to), but it was the "episodes" that would scare me (and my family).  I would have these seizure-like episodes, but no one could tell me they were seizures, or anything else for that matter.  They'd say "has anyone ever told you you're having seizures?"  And I'd say "no..."  And they'd say "hmm, okay..."  And that was that.  I was in and out of urgent care with these episodes, because I'd be doing somewhat fine and then have an episode out of the blue, that would scare the crap out of us.  Sometimes they were mostly neurological, sometimes they were related to my heart (EKG's are always normal too), and sometimes it was a strange workup of a variety of different symptoms- but it would knock me off my feet for a day...  Or a few. But then they'd tell me nothing was wrong and we'd shrug it off because no one ever knew what was wrong, and I'd feel fine again for a while.  It was too complicated and unknown and frightening to keep thinking about, so as long as I was feeling fine again, it was easier to pretend nothing had ever happened.  And then it would happen again...  It was a cycle.  

Throughout college this thing morphed a little more.  I was sick all the time.  Chronic UTI's (literally every 2-4 weeks), constant colds, tonsillitis, etc.  I had my tonsils removed during my junior year of college, hoping that would solve some of the problems (oh my dear, tonsillectomy when you're an adult... woof).  It didn't really.  Things just changed again.  

Since college, things have continued to change.  Joint pain, electrocution, "episodes," etc. all continue to happen, and now there are some added goodies:

feelings of something crawling on my skin;
tingling in my fingers;
tingling in my tongue;
body parts falling to sleep;
hair loss; 
tremors;
feeling of starvation and depletion, regardless of what or how often I eat;
extreme fatigue;
headaches;
jaw pain;
dizziness;
body aches;
muscle spasms;
feeling of tightness/heaviness/pressure or pain in my chest;
heart palpitations;
I can feel my heart pounding and working hard with minimal or no exertion; 
shortness of breath; 
foggy thinking/zone outs;
difficulty concentrating/multi-tasking;
vision rapidly shifting back and forth for a moment, usually when I work out;
shooting pains that follow nerves;
pressure in my head; 
increased eye floaters;
easy bruising, slow healing;
Charlie horses; 
feeling of vibration, like a light buzz or hum inside my body, sometimes when I work out and often when I first wake up in the morning;
episodes where everything hits me at once and I can't work for a few days or a week or so...
To name a few...  : - )  

The above list has been increasing since about 2012, and more so in the summer of 2013.  So I had had enough.  I was done getting the run-around from doctors who looked at me like I was crazy, referred me to psychiatrists, told me they didn't know what was wrong, or that nothing was wrong, or that "maybe I had MS, but they didn't know," or anything else they could tell me because they didn't know what to do with me.  Obviously, something definitely was not right.  I was determined to figure out what that was.  

So I shifted gears and went to an awesome naturopath in Portland.  He listened to me.  He started with the basics and checked for vitamin deficiencies.  I had major vitamin D and B deficiencies, as well as really low ferritin (iron stores).  Yay, we knew that was probably causing a lot of my symptoms.  So we treated that.  Six months later I began crashing again, so I went back to see him.  He figured we should test my cortisol levels (stress hormone) and check adrenal function.  My cortisol levels were low at 11am and 12pm, which is pretty much exactly when I would begin to crash daily at that point.  Yay again!  We began treating that.  Somewhere along the road a lightbulb turned on in my doctor's head.  He was looking through all of my bloodwork and test results and looking at my progress (or lack thereof) and said "you know, now this is probably jumping the gun, and I wouldn't want to even suggest that you could have this if you don't, because I don't want you to have this...  But maybe we should test for Lyme Disease."  Like an idiot (who still knew nothing about Lyme Disease), I said "Oh!  I had that when I was 10 : - )."  He turned white and asked me all about it.  When I told him I'd been treated for 2 weeks with Doxycycline he said "we're testing you for Lyme Disease."  Thank goodness for this doctor who listened to me and was patient with me.  

Once I started learning what Lyme Disease actually was, I was convinced that that's what I had.  It made so much sense.  People always thought that I was crazy for asking if or for thinking that the extensive list of symptoms above were related to each other at all.  Often times when I'd go to a doctor I'd say "well right now I'm having [chest pain and heart palpitations], but as long as I'm here..." and they'd look at me like I was nuts.  I don't blame them.  It's obviously hard to piece together.  But I always had a feeling that I should mention as many symptoms as I could think of at that moment, because although I had no idea, I felt as though they were all related in some way.  

My blood test for Lyme Disease came back positive, according to the guidelines set by the Center for Disease Control and Infectious Diseases Society of America.  This means that I had antibodies to the borrelia burgdorferi bacteria that causes Lyme Disease.  Whether that means I had it or have it is the great debate, which leads me to...  

The struggle:  

Now let me explain to you the Lyme Disease struggle.  Lyme Disease is one of the most controversial diseases on this planet.  Scientists/researchers/doctors cannot agree on the prevalence/stages/severity of Lyme Disease, nor how to treat it.  So I will present to you both sides of the spectrum, and we'll go from there:

Stance 1:  All treatment guidelines for Lyme Disease in the United States are controlled by the Center for Disease Control (CDC) and Infectious Diseases Society of America (IDSA).

I will refer you to the CDC (Center for Disease Control) website on this.  Take a quick look around to understand their stance on Lyme Disease and how Lyme is supposed to be diagnosed and treated in our country.   http://www.cdc.gov/lyme/

In a nutshell, generally, it is believed that Lyme Disease is difficult to contract and easy to treat with a short course of antibiotics.  Any lingering symptoms after 2-4 weeks of antibiotic treatment are termed "Post-Treatment Lyme Disease Symptoms (PTLDS), not Stage 3/Late Stage/Chronic Lyme Disease as others may incorrectly term it- there's no such thing as Chronic Lyme Disease.  The bacteria is no longer active and there are lingering symptoms- the cause is unknown.  

Stance 2:  Note:  Anyone who treats a Lyme patient with antibiotics for longer than the 2-4 weeks as the IDSA lays out is at risk of losing their license to practice.  These practitioners are willing to do that, because their research shows that there is such a thing as Stage 3/Late Stage/Chronic Lyme Disease, yet this research will not get recognized by the CDC or IDSA.  They believe the bacteria is still active and running rampant in the patient's body, attacking various organs, which in turn cause the host of complications and symptoms related to them.  

Regardless of what the CDC and IDSA say, there are patients who have had "Lyme Disease" listed as their cause of death on their birth certificates.  

The excerpt below is from a doctor in Oregon who believes in the occurrence of chronic Lyme Disease:  

There is controversy about the prevalence, and accuracy of diagnosis, of what is called chronic lyme disease. The symptoms can mimic other diseases and may be misdiagnosed. Lyme disease has been labeled the ‘great mimicker’. The most common symptoms are roaming joint pain, headaches, twitching, numbness in the body, weakness in muscles, Bell’s palsy, visual changes, light sensitivity, shortness of breath, night sweats, memory loss, confusion, difficulty concentrating, mood swings, extreme fatigue, swollen glands and unexplained fevers. Lab testing is suggested but is not always accurate in identifying the presence of lyme disease. This makes it very difficult to arrive at a diagnosis. Many doctors have resorted to a “clinical diagnosis”. This means that when the medical history and the clinic symptoms are most characteristic of Lyme disease, then Lyme disease is diagnosed..

Further, the testing for Lyme Disease is not reliable.  There is no 100%, fool-proof, "yes, you have Lyme Disease," or "no, you do not have Lyme Disease" test (again, only the Erythema Migrans rash is a tell-tale sign.  If you don't have the rash but have symptoms, things are much more difficult...  Yet I had the rash and I had 2 weeks of treatment, but it's taken me 16 years to arrive at where I am today).  Hundreds of people who get tested for Lyme Disease have negative results, but are infected.  The blood tests check for antibodies to the Lyme bacteria.  There's disagreement as to what this even means as far as current or past infection.  

So again, my blood test came back positive for Lyme Disease- even by CDC and IDSA standards.  But the theory on how to treat me...  Man, oh man is that up for debate.  A hot debate.  If you'd like to know what my thoughts are on this, feel free to send me a private message...  Or look at my list of symptoms and experiences at doctor's offices for the last 16 years and decide if you think I would think that this is likely "Post-Treatment Lyme Disease Symptoms" (yes, quotes used intentionally here), or Chronic Lyme Disease.  One means that I was treated as well as anyone could treat me when I was 10, and everything since then and everything that will be for the rest of my life are symptoms caused by something unknown or an autoimmune response for which there is no cure; and one says that I still have an active bacterial infection that needs to be treated for months to years, for which there is no cure but there is remission.  Either way...  Awesome.  

I have no clue what the hell this is (sorry).  I just know that since I was 10 years old, I have not felt right.  It's been one thing after another, and I had no idea what Lyme Disease even was.  No idea.  Do you think the above list spawned out of nowhere and I made it up for fun-sies?  Do I think it's coincidental that since I was 10 years old, all of the above has happened and just so happens to fit the picture of Chronic Lyme Disease, when I didn't know there was such a thing?  No, I do not.  Thousands of other people are battling my same battle- I've spoken with quite a few, and it's creepy.  So I don't know, and really no one knows for sure what this is depending on how you look at it, because no one in the world can agree on it.  I pray that some day (some day soon would be awesome) there will be accurate testing for Lyme Disease, proper education of what it is and how to prevent it, and an agreement on whether chronic Lyme Disease exists and how to treat it.  Until then, yikes on bikes.  This will continue to be one crazy journey.  

I HIGHLY encourage you to watch the documentary "Under Our Skin."  The whole thing is on YouTube, right here:  https://www.youtube.com/watch?v=2JgR_Jfbhv8&oref=https%3A%2F%2Fwww.youtube.com%2F&has_verified=1
It explains Lyme Disease and the controversy surrounding Lyme much better.  It's really interesting.  It won't be a waste of your time, I promise.  


The Plan:  
I am seeing a doctor who has years of experience treating patients with Chronic Lyme Disease.  This doctor is capable of treating with either/both antibiotics and herbs.  As it currently stands, the plan is to begin with herbal treatment and go from there.  Likely down the road we will switch to antibiotics, or add antibiotics to the mix, and likely further down the road switch things up more.  No matter what you believe is happening (Post-Treatment Lyme Disease Symptoms or Chronic Lyme, or neither), there is no cure-all, no quick fix.  This is going to be a long battle.  I've been dealing with this for 16 years, so really nothing has changed, except now I know what I'm battling (kind of, ha).  But at the same time things have changed a lot in the last 2 years- even in the last few months.  I do not feel well.  My days are up and down.  Today I had to lay down after doing the dishes, and I couldn't really get back up for 3 hours.  Until my next appointment, mid-September, I am taking some things that are supposed to begin breaking down the biofilm around the bacteria (its protective layer) so that the bacteria is more exposed when we begin treatment.  

This bacteria is evolved and means business.  Take a look at this page to see the 3 forms the bacteria can take-on in order to survive in the human body:  http://www.lymebook.com/top10forms

To sum it up, Lyme bacteria begin as a "spirochete," a spiral shape when it is transmitted from tick to human, so that it can drill through all cells and tissues and invade any part of your body that it would like to.  
When the spirochete feels threatened, whether by your own body attacking it or a helper such as antibiotics or herbs, it can change into a cell-wall-deficient form in order to better hide.  And from there, when it feels further threatened, it can transform into a cyst form.  All three forms cause differing symptoms and need a different form of treatment.  Take it or leave it.  Perhaps my 2 week Doxycycline treatment wasn't long enough and only forced these jerks to morph into something that would be more challenging to treat- and therefore I have gone untreated for 16 years?  That's one school of thought.  

Asking days, or weeks, or even months from right now if I'm "all better" just hurts, just to be honest with you, when I know that this doesn't work like that.  Feeling like this and knowing that there's no cure is hard to swallow.  One of the hardest things for me right now is coming to terms with that.  Right now, there is no cure.  I have a disease from a stupid tick bite that will be with me forever.  And what's so much worse is that it will be with my family forever.  Lyme Disease (whether you agree with CDC and IDSA or not) can be transmitted from mother to child.  There's more controversy over that, but THAT possibility of transmission is a fact, no matter how you look at it.  There are unknowns with every pregnancy, of course, just as anything can happen to anyone at any time.  But the fact that we know  this specific possibility exists because I have Lyme, and we know the complications that can come from it...  You do the math.  I felt like part of me died when my doctor confirmed that any pregnancies are basically "at your own risk."  So yes, I'm still grieving about that.  And no, that doesn't mean we've already completely ruled out the possibility of having children.  It's way too early in this game to make that decision.  We have a lot to learn and a lot to accomplish before we make that decision.  But the decision is now there, where there never was a decision before.  

Some more feelings:  
I'm learning a lot, but there's so much I can't tell you because there's so much controversy or just plain unknown.  If this brings up more questions, I'd be more than happy to answer them.  Just please be sure to be really sensitive to what and how you ask them, because I'm having a hard time.  I never want to admit that I'm having a hard time, and I'm straight up telling you, this is hard.  I know it will get better, this is just all so knew.  But I also know it will get harder, because this is just the beginning and there's a long road ahead of us.  I appreciate optimism, but also don't appreciate false hope right now.  I'm not expecting or hoping you will tell me it will all be okay.  I know that it will somehow.  But for some reason I don't want to hear it from you right now, unless you know all the facts about Lyme.  What I want to hear is "I'm here for you," and "let me know if there's anything I can do for you," if you have that to offer.  

I'm not crazy, I'm confused.  I'm validated, but confused as all get-out.  When someone says "it must feel so good to finally know!"  Of course it does.  Seriously, that validation is priceless after 16 years, but did you read above?  I feel validated and I feel more frightened with the knowledge that I now have.  Nothing about it feels "good."  The fact that nobody can agree on Lyme Disease is extremely unsettling.  

When you ask me how I'm feeling, I will tell you.  I have lied for so long, that I'm ready to tell you when I don't feel good.  That feeling may pass, when I realize that no one wants to hear it anymore (which is already happening), but don't ask if you don't legitimately want to know or care.  

When I tell you what symptoms are flaring up, please don't tell me "well it's probably just stress..."  or "you're probably just tired..."  or "you probably just overdid it today..."  or "have you had enough water today?" or "have you eaten enough today?" or "what have you done differently today?" or "have you taken anything for it?" Please, for Pete's sake, don't say any of those things to me.  They really, really frustrate me.  I'm not looking for answers from you.  After 16 years, I know what Lyme feels like and I know what it doesn't feel like.  I know the difference between a regular headache and a damn Lyme headache.  I know the difference between overdoing it at the gym or injuring myself, and excruciating traveling pain from Lyme.  I know the difference between a body part falling to sleep because I've been sleeping on it the wrong way for hours and body parts falling to sleep for no apparent reason.  I know the difference between my tongue being numb from a food allergy and my tongue being numb from Lyme.  I know the difference between tremors, light-headedness, and anything else related to not having enough food or water, and Lyme.  I know the difference between feeling overwhelmed and stressed out and having pain in my chest and heart palpitations from Lyme.  I know the difference.  I can feel a difference.  I never knew what that difference could be attributed to, but I could feel the difference.  


Thank you:  

Thank you from the bottom of my heart for listening.  Just writing this has been really therapeutic for me.  And I'm fine.  I feel like any time anyone has to blog about something difficult, people get up-in-arms about it.  I'll be fine.  I've made it this far...  ; - ).  I will beat this blasted thing.  I'm prepared to fight.  I will win.  I just need you to know that as of now, "winning" doesn't mean being cured.  It means putting it into remission so that I can live as symptom-free of a life as possible.  

In the mean time, I don't want to be treated any differently...  Except, be thoughtful of the questions you ask.  That is all.  


CHECK YOURSELF:  
And please, for the love of all that is good, check yourself for ticks when you spend time outdoors.  Not all ticks are infected with Lyme Disease, but they're out there- even in Oregon.  Don't let anyone tell you Lyme isn't in Oregon.  I'm living proof that it is.  Let me remind you that I was in SunRiver, Oregon when I contracted this.  I don't want to scare you.  No one needs to live their life in fear.  I just want you to know.  Just know to check yourself for ticks, and know what to do if you find one.  Knowing how to remove the tick if you are lucky enough to find it is really important as well!  

Taken from the American Lyme Disease Foundation's website:  

Prevention & Control

Larval and nymphal deer ticks often hide in shady, moist ground litter, but adults can often be found above the ground clinging to tall grass, brush, and shrubs. They also inhabit lawns and gardens, especially at the edges of woodlands and around old stone walls where deer and white-footed mice, the ticks' preferred hosts, thrive. Within the endemic range of B. burgdorferi (the spirochete that infects the deer tick and causes LD), no natural, vegetated area can be considered completely free of infected ticks.

Deer ticks cannot jump or fly, and do not drop from above onto a passing animal. Potential hosts (which include all wild birds and mammals, domestic animals, and humans) acquire ticks only by direct contact with them. Once a tick latches onto human skin it generally climbs upward until it reaches a protected or creased area, often the back of the knee, groin, navel, armpit, ears, or nape of the neck. It then begins the process of inserting its mouthparts into the skin until it reaches the blood supply.

In tick-infested areas, the best precaution against LD is to avoid contact with soil, leaf litter and vegetation as much as possible. However, if you garden, hike, camp, hunt, work outdoors or otherwise spend time in woods, brush or overgrown fields, you should use acombination of precautions to dramatically reduce your chances of getting Lyme disease:

First, using color and size as indicators, learn how to distinguish between:

Deer tick larva (top), nymph (right) and adult (left).	deer tick* nymphs and adults deer ticks and two other common tick species - dog ticks and Lone Star ticks (neither of which is known to transmit Lyme disease) *Deer ticks are found east of the Rockies; their look-alike close relatives, the western black-legged ticks, are found and can transmit Lyme disease west of the Rockies.
Dog tick.	Lone star tick.

Then, when spending time outdoors, make these easy precautions part of your routine:

• Wear enclosed shoes and light-colored clothing with a tight weave to spot ticks easily
• Scan clothes and any exposed skin frequently for ticks while outdoors
• Stay on cleared, well-traveled trails
• Use insect repellant containing DEET (Diethyl-meta-toluamide) on skin or clothes if you intend to go off-trail or into overgrown areas
• Avoid sitting directly on the ground or on stone walls (havens for ticks and their hosts)
• Keep long hair tied back, especially when gardening
• Do a final, full-body tick-check at the end of the day (also check children and pets)

When taking the above precautions, consider these important facts:

• If you tuck long pants into socks and shirts into pants, be aware that ticks that contact your clothes will climb upward in search of exposed skin. This means they may climb to hidden areas of the head and neck if not intercepted first; spot-check clothes frequently.
• Clothes can be sprayed with either DEET or Permethrin. Only DEET can be used on exposed skin, but never in high concentrations; follow the manufacturer's directions.
• Upon returning home, clothes can be spun in the dryer for 20 minutes to kill any unseen ticks
• A shower and shampoo may help to remove crawling ticks, but will not remove attached ticks. Inspect yourself and your children carefully after a shower. Keep in mind that nymphal deer ticks are the size of poppy seeds; adult deer ticks are the size of apple seeds.

Any contact with vegetation, even playing in the yard, can result in exposure to ticks, so careful daily self-inspection is necessary whenever you engage in outdoor activities and the temperature exceeds 45° F (the temperature above which deer ticks are active). Frequent tick checks should be followed by a systematic, whole-body examination each night before going to bed. Performed consistently, this ritual is perhaps the single most effective current method for prevention of Lyme disease.

Video of Proper Tick Removal

If you DO find a tick attached to your skin, there is no need to panic. Not all ticks are infected, and studies of infected deer ticks have shown that they begin transmitting Lyme disease an average of 36 to 48 hours after attachment.Therefore, your chances of contracting LD are greatly reduced if you remove a tick within the first 48 hours. Remember, too, that nearly all of early diagnosed Lyme disease cases are easily treated and cured.

To remove a tick, follow these steps:

1. Using a pair of pointed precision* tweezers, grasp the tick by the head or mouthparts right where they enter the skin. DO NOT grasp the tick by the body.
2. Without jerking, pull firmly and steadily directly outward. DO NOT twist the tick out or apply petroleum jelly, a hot match, alcohol or any other irritant to the tick in an attempt to get it to back out.
3. Place the tick in a vial or jar of alcohol to kill it.
4. Clean the bite wound with disinfectant.
   
   *Keep in mind that certain types of fine-pointed tweezers, especially those that are etched, or rasped, at the tips, may not be effective in removing nymphal deer ticks. Choose unrasped fine-pointed tweezers whose tips align tightly when pressed firmly together.

Then, monitor the site of the bite for the appearance of a rash beginning 3 to 30 days after the bite. At the same time, learn about the other early symptoms of Lyme disease and watch to see if they appear in about the same timeframe. If a rash or other early symptoms develop, see a physician immediately.

Finally, prevention is not limited to personal precautions. Those who enjoy spending time in their yards can reduce the tick population around the home by:

• keeping lawns mowed and edges trimmed
• clearing brush, leaf litter and tall grass around houses and at the edges of gardens and open stone walls
• stacking woodpiles neatly in a dry location and preferably off the ground
• clearing all leaf litter (including the remains of perennials) out of the garden in the fall
• having a licensed professional spray the residential environment (only the areas frequented by humans) with an insecticide in late May (to control nymphs) and optionally in September (to control adults).

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