Lyme Disease and Alzheimer's Disease

Several months ago, I had an experience where I ran into someone who appeared to know me quite well, but I had no idea who the person was, how I knew her, or how well I knew her. While everyone occasionally forgets names and faces, this was much different. In fact, it was downright scary. For me, it felt like I was looking Alzheimer's disease in the face.

We engaged in a conversation lasting approximately 10 minutes, with me trying desperately to figure out from context clues who this person was! I couldn't piece it together, and, about 20 minutes after parting with her, something in my brain woke up and I realized exactly who she was, how I knew her, and how well I knew her. She was an old neighbor, a person I saw on a near daily basis for a few years.

The whole incident was very traumatic and left me feeling like Lyme disease had stripped me of any semblance of control over my body. While I have made great strides of improvement in my health since that time, today, however, as I near the two week marker of being off of antibiotics, I found myself in the same horrifying situation once again.

I knew that I knew this person. The face was very familiar. And I knew that this person had some connection to my husband--which was more clues than I had the first time--but other than that, all details were erased from my brain. This time, it took nearly eight hours for my brain to snap back to Earth and reveal the identity of the mystery person. The name popped in my head and all details were suddenly back again. This was someone who I had hung out with several times; someone who had visited my house on multiple occasions.

On many occasions, I have felt like I have Alzheimer's disease.  In 2006 (I might be wrong about that year!), Dr. Alan MacDonald found a link between Lyme disease and Alzheimer's disease when he found Lyme spirochetes in the brains of seven out of ten victims of Alzheimer's. Dr. MacDonald passed away in 2008, ironically from Alzheimer's, but his work is being continued by other researchers.

My Alzheimer's-like episode today had me thinking about all of this, and in my research for this blog, I came across this article saying that Alzheimer's may be transmissible, and may in fact be the result of an infection.   

Lyme disease is commonly misdiagnosed as Alzheimer's disease. It sure makes you wonder....

Epstein Barr Virus and Lyme Disease

In 2001, I was taking a bath when I noticed that there was a tick under my right armpit. I was so preoccupied that this creepy thing was attached to me and sucking my blood that Lyme disease was not something that ever crossed my mind; also, I didn't even know that people got Lyme in my state (I now know that it's in all 50 states and there are a lot of people with it in my state). What did cross my mind went more like this--Get this disgusting, creepy thing off of me, NOW!"

The timeline of what happened next is a bit of a blur, but to this day I still shake my head in disbelief that no one--not me, not the doctors, not my family or friends--connected my sudden problems with that creepy little life-ruiner under my armpit. I developed a severe case of mono (when I came down with Lyme-like symptoms again in 2009, it also presented as a very severe case of mono).

All of the sudden, I was waking up in the middle of the night with panic attacks. My throat felt like I was swallowing glass. I couldn't go anywhere or do anything for months. I had to have 'round the clock help to take care of myself. As the months went on, I suddenly found myself facing agoraphobia, debilitating anxiety and panic attacks, severe depression, restless leg syndrome so bad I couldn't sleep, separation anxiety from my boyfriend who I had moved in with and who selflessly took care of me through this agony (I married this wonderful man in 2002!).

Until I got sick again with Lyme in 2009, this case of "mono" in 2001 was the most painful thing I ever went through--including my two natural childbirths in 2003 and 2007. This should have been a red flag to my doctor that it wasn't just a simple case of mono! Again in 2009, this second case of mono became the new most-painful-thing-I've-ever-endured-in-my-life. I told my doctor over and over--This. Is. Not. Mono! ("This shooting pain going up my legs is not mono! This blurry/foggy vision is not mono! This joint pain, these tremors, mental confusion--and on and on and on-- are not mono...")

A few days ago, I took my kids to a new dentist. I was absolutely dreading telling the dental hygenist that my kids had contracted Lyme disease and several co-infections in utero from me and had been on antibiotics a lot (this is important information for a dentist to know, because antibiotics can affect the teeth). Imagine my surprise when the hygenist informed me that the dentist had Lyme disease, too! When the dentist came in, we started talking and I had mentioned that my Lyme had initially presented as mono and she said hers did, too!

I remember my doctor asking me surprisedly in 2001, "Are you sure you weren't around anyone with mono?!" My boyfriend and I were baffled at the time at how he managed to escape catching my incredibly contagious case of mono--aka The Kissing Disease--after being in such close contact with me before we knew I was contagious. Could the epstein barr virus, the virus that causes mono, be a tick-borne illness? Apparently, I'm not the only one who has wondered this question! 

Maybe in the future, doctors will ask people if they've recently been bit by a tick if they test positive for mono. And perhaps that could help lead more people to getting diagnosed properly with Lyme disease instead of being labeled as simply mono, when in fact, that may only be the tip of the iceburg!

One Year Lyme-A-Versary

Today marks the one year anniversary of my official diagnosis of late stage Lyme disease and the day that I began treatment. I can hardly believe how much my life has changed in the course of this single tumultuous year of my life. Oddly enough, as incapacitated as I was throughout much of this year, this is the year that I truly started living and loving my life.

What amazes me the most when I look back on this year full of unimaginable physical pain (Can you read that okay? Should I make it larger? I can do that, you know!), it's the beautiful moments that stand out, not the dark days. It's the love and kindness and support that I remember most. It's the laughter and tears of joy that I cherish. And that's enough to take the power away from all of the pain of this year.

I choose not to look on this anniversary with sadness, for this was a year filled with loss and closed doors. Instead, I choose to look upon it with gratitude and gladness--for this was a year full of unbelievable triumphs and lessons. This was a year full of amazing new friendships.

I love my life now, although I wish it wouldn't have taken a very rude awakening from Lyme disease to make that happen, but that's what it took to awaken my soul. I am so happy with my life now and who I have become through learning to dance my way through Lymeland. Thank you from the bottom of my heart to those very special people in my life who have shared the dance with me! I love you all and wouldn't be here without you.

Random Absurdities

Today, I am going to reveal a random absurdity about myself: Now don't get too excited, because it's actually pretty dull, but, here goes: I have a huge phobia about starting new medicines. I become irrationally convinced that if I take a new medicine, I am going to have an allergic reaction and die. I suppose this is the part where I need to embarrassingly (but happily) mention that I've never had an allergic reaction to any medicine, whatsoever!

So, where does this bizarre phobia come from? Well, I have absolutely no clue since, like I said, I've never had anything even remotely close to a reaction from a medicine. But, it sure does make Lyme disease treatment difficult for me! I am constantly starting new medicines, and every single time I have to begin a new one, that old phobia rears its ugly head and I feel the need to call my friends and say farewell.

So, would you care to take a guess at what's happening today? Yep, I'm starting a new medicine. I know nothing about this medicine other than the fact that it's a very unnattractive brown color that my kids would likely dub "poopy brown." I prefer to keep myself in the dark about this medicine until I see once and for all that I haven't keeled over from that ugly ol' poopy brown pill!

When you have Lyme disease and you start a new medicine, it is supposed to make you feel bad and that's supposed to be a good thing, because it means the medicine is killing off the bad bugs and causing you to Herx. The problem with my phobia about taking a new medicine is that it puts me on hyper alert for every single twinge or twitch that goes on in my body that could signify a sign of an allergic reaction.

And the problem with that is that I've got the hiccups right now, which I'm pretty sure is my body's way of laughing at me. Damnit, hiccups, you're messing up my phobia! How am I supposed to be convinced that I'm dying if I'm hiccuping and laughing every 15 seconds! Bah! The nerve!

Heaven on Earth

I start every day and end every day by checking in on all of my Lyme friends to see how they are doing. Unless you spend a lot of time around someone with Lyme disease, you can't imagine the physical and mental pain that it causes. It is so easy to lose hope when you are sick day after day, and I really worry about my Lyme friends. I hope this post helps all of you out there with Lyme disease to remember that you will get better and that there are amazing things waiting just around the corner for you, too!

Last Saturday, as many of you know, my dream came true and I found my equine soul mate. While I did have one day where I sent my friend a panicked email along the lines of "What have I done; I'm too sick to take care of a horse!",  I really feel with all my heart that getting this horse was the right thing to do. Owning a horse and struggling with chronic illness is going to be a challenge, but it has already given me so much joy after only one week.

My horse is boarded at a barn about 10 minutes away from where I live. The owners feed and water and keep a close watch on all of the horses. Anytime I can't make it out to the barn, I know my horse is in good hands. The barn owners always go above and beyond (I boarded my previous horse with them for five years) and I am so blessed to have found such an amazing home for my precious new horse, Fjóla.

Peekaboo! 

Thanks to my dear, understanding hubby, who graciously became a single father this week so I could spend every possible moment together with my new horse, I managed to make it to the barn every day but one this week, and with the level of exhaustion I felt  (plus being in the middle of a major heat wave here), that is pretty impressive.

I didn't anticipate the impact Fjóla would have on me so quickly. The thought of that beautiful horse--so excited to see me already, after only one week together--makes every day that I can possibly make it to the barn worth every bit of the fight that it takes to get to her. And she has shown me after such a short time together that she--the pony who went almost entirely unhandled for all but the last half a year--was waiting for someone just like me her whole life. She is the most loving, kind, affectionate, curious and laid back horse I've ever met! It just goes to show you that the dreams that you have to fight the hardest for are truly heaven on earth!
         

A Tiny Victory

Please take a moment to visit Heather's blog over at Today I feel Exceptionally...and read her post about having to go to the ER.

Having to go to the emergency room is a huge fear for most of us with Lyme disease. The vast majority of doctors treat us like lepers when they find out we have Lyme disease, especially when they hear the number of medications we have to take. Lyme disease is as controversial as AIDS was in the 80s.

This is the first time I've ever heard of someone with Lyme having a positive experience at the ER (well, as positive as possible for being in the emergency room!), and I think it serves as a wonderful reminder that, even though it isn't the normal to have a doctor sympathetic to the diagnosis of Lyme, there are still amazing doctors out there who won't give up on us for having a disease that doesn't follow a textbook norm.

Heather's post feels like a tiny victory for those of us with Lyme disease. We have been bullied and verbally abused by the medical community for so long, we come to expect it. Heather's post shows us that that doesn't have to happen. Having a disease so excruciating that the number one cause of death is suicide is quite enough for us to swallow; having to deal with being treated like an outcast because doctors don't understand this disease is downright appalling, yet remains a sad realty for those of us Lyme disease.

Thank you Heather, for sharing this victory with us in the Lyme community. And here's to hoping Heather is feeling much, much better soon!

Dancing With Lyme Disease

Yesterday, I felt like a pampered princess! I went to my weekly belly dancing class, which is taught by a good friend of mine, and then I went straight to another friend's house for my weekly massage. A girl could really get used to that kind of treatment!

I absolutely love belly dance class, despite the fact that I've been frozen in the beginner class for a long time because I've had to drop out a handful of times when my Lyme disease knocked me on my butt. But, I've learned several moves and I practice frequently at home, even--and especially--when I don't feel well. Also, since my friend teaches the class, she is very understanding of my situation and knows that I may need to quit early or alter certain moves.

Before I had even considered taking belly dancing, my friend--the belly dance instructor--posted an article on Facebook about belly dancing for people with chronic pain. I wish I could find the article, but let's just say it certainly piqued my interest! I called her up and asked if she thought it would be possible for me to dance with my Lyme disease and she said it was certainly worth a try.

When I first started taking classes, it was often the only time during the week that I was able to get out of the house that didn't involve going to the doctor's office or the pharmacy. I was surprised to learn one of the first benefits of taking classes during my illness was that it got me out of the house, which really lifted my spirits!

Belly dancing boosts your self image. It makes you feel more confidant and proud of your body. Let's face it--when you're sick, you don't look or feel your best. I've found that when I dance, it gives me a reason to be extra proud of my body--the body that I'm not always so kind to, yet daily gives its all to battle Lyme disease.

One of the greatest benefits of belly dancing is that the movements really help with my Lyme pain--especially the hip pain. To think that I almost didn't take classes because of my hip pain! On days when my hips are bothering me, I start dancing, and before I can say Metamucil, I no longer feel like an achy octogenarian!

When I first started dancing, I had to have someone drop me off and pick me up. Soon, I started to notice that I often felt completely energized after class, which, for someone with my level of fatigue is pretty amazing! I'm able to drive myself to and from class again, which makes me proud.

Dancing with Lyme disease has been quite an adventure, in more ways than one! And while I understand that belly dancing is certainly not for everyone, I do encourage you to find a way to keep yourself moving, especially if you have chronic pain. Even better is to find a fun way to keep yourself moving, like belly dancing. (Maybe I'm a little biased!).

When you are sick, it is so easy to fall into the vicous cycle of laying in bed for hours--sometimes even all day--and not getting any exercise at all. Even if it's just a few simple stretches, your body will thank you for it the next day!

Tightrope Walker

When I was a little girl, I had my life carefully planned out: I was certain that my life's purpose was to run away and join the circus to be a tightrope walker. Needless to say, that plan didn't work out. Yet now, strangely enough, I've come back to that image of me as a tightrope walker once more. Don't worry, I promise you that I'm not planning to run away and join the circus...

It's just that Lyme disease has left me feeling like a tightrope walker who is just beginning to learn how to master the art of balance.There I am, flailing my arms left and right in a desperate attempt not to go down-- which only causes me to lose my footing!  This Herx has really knocked me off balance and now I'm scrambling every which way to avoid falling down--the memory of falling flat on my face fresh in my mind.
 
Sometimes, the grownup in you needs to be quiet long enough to listen to the child that is still inside of you. I know the stubborn, outspoken little girl in me--the tightrope walker--would have quite a few things to say to the grown up version of the tightrope walker. Don't look down or you'll fall! And don't even think about falling; just think about what you do want to do and DO IT! I know you will get across to the other side!

So, for the little girl in me who always wanted to join the circus, I'm going to stop thinking about falling and start focusing on getting across to the other side of the tightrope. And if I do fall down, I've got an amazing safety net waiting with open arms to catch me--my family and friends.

Washington, D.C.

This weekend, we took a quick trip to Washington, D.C. to visit some friends and to go sightseeing for my son's eighth birthday--something he's been begging to do since his best friend moved there a year and a half ago. My husband couldn't get off work early on Friday, so we didn't cruise out of town until late on Friday evening. It was supposed to take about three and a half hours to get there, but it took quite a bit longer than expected.

The trip there was one of those trips that ends up being a good story for its drama factor, but not much fun at the time! The excitement began before we even left town. My husband got home from work and stopped at the grocery store to pick up two prescriptions for me and a few other odds and ends, and in the rush managed to forget my prescriptions in the bottom of the shopping cart.

My husband came home from the grocery store and I started rummaging through the bags for my medicine but I couldn't find them. Hubby quickly realized what happened, so we finished packing up the car and drove back to the store, desperately hoping that someone would have been nice enough to turn in my medicine. We lucked out and someone had turned in my medicine to the pharmacy! It was a bit of a rocky start to our trip, but we laughed it off. (Oh, we were so young and innocent back then!)

Things were going pretty smoothly and we were making great timing until we hit the beltway in DC. It was around 10:30 P.M. at that time and the kids were still awake and giddy with excitement. Sadly, that's when our fun ended--we hit major construction and it took around two hours to go only a few miles. (We eventually discovered the reason for this was that, because of the construction, they reduced five lanes of traffic down to one--yikes!)

Our generally patient car travelers in the backseat--who shall remain nameless--lost their patience pretty quickly. Of course they did! But, oh my, you've never heard such screaming! Our air conditioner was broken, so--sorry to the other folks on the beltway--we had to keep the windows down. I had to chuckle as a car kept passing by with music roaring and passengers laughing and dancing, colliding with the screams of death coming out our windows.

I was dying to go to the bathroom, because when you're stuck in traffic for a long time someone has to fill that role! Shortly thereafter, our little country car decided it couldn't handle the big city stop-and-go traffic anymore! Our car--lovingly referred to as Green Machine--started idling like it was going to stall out at any moment, and our radio and lights kept going out (experience and listening to Car Talk tells me it was the alternator).We were only ten miles from our friends' house, but with the traffic, there was no way they would have been able to get to us to help.

Suddenly we heard a loud CRUNCH! My husband and I looked at each other, wondering if something had just fallen off of our car. Luckily for us, and unluckily for the folks in the lane next to us, there was a little fender bender. We sighed a little sigh of relief, and my valiant husband kept up his job of sweet-talking Green Machine into not throwing in the towel, or at least not until we got off the beltway!

I had three jobs: first and foremost, DONOTPEEMYPANTS; second, try to keep the angry passengers in the back seat from revolting; third, and finally, offer my left leg up to the gods if they would just get us there safely, which they did (and they graciously let me keep my leg, too)!

Perhaps due to the fact that my Lyme disease has thrown us every curve ball under the sun, we managed to survive the incredibly dramatic trip to Washington, D.C. Our wonderful hosts--sleep deprived parents of three young children--graciously kept watch for us until we finally arrived at their house slightly past one A.M. It took a little more than five and a half hours, but we made it! Our friends were a little surprised to see us laughing at the drama of the situation, but what can I say--Lyme disease has really toughened us up!

The rest of the trip was a blast. I forgot my camera when we went into the city, so I have no pictures to document our trip except for a few that I took with my camera phone. Whoops! We went to the Air and Space Museum  on Saturday (I rode in a wheel chair), and then we ate lunch at the Mitsitam Cafe in the Museum of the American Indian. Our friends assured us that the food there was amazing, and it was! I had wild Alaskan salmon, which was quite yummy!

Weak proof that we were actually in D.C.

The grownups rested on the National Mall, while the kids ran around and played. It was a blast, but, wow, was I exhausted! Our friends were such great hosts and I'm so glad I went. I had such a good time even though I was feeling incredibly achy and exhausted most of the time. Take that, Lyme disease!

Our drive home yesterday morning was uneventful, which we were quite happy about! It took exactly three and a half hours, as it should have.

Kombucha

A few months ago, I read about a fermented drink called Kombucha (pronounced com-BOO-cha) in the book The Lyme Diet. I really wanted to try it, but wasn't sure where to find it. A few weeks ago, a friend of mine casually mentioned a drink she had recently discovered called--you guessed it!--Kombucha. And her friend makes it, so she wanted to share some with me so I could try it!

She warned me that the first bottle might be a bit rough going down because it's an acquired taste, but after a few bottles you start craving it. I slowly drank down my first bottle, and yes, it was weird! It was like drinking those fizzy things you use to color Easter eggs--it was bubbly and it smelled vinegary. But, that day was a medicine day for me and I noticed that I didn't have stomach issues that day! Hmmm....

My friend was right--after a few bottles, I was hooked. And not only that, my stomach was happier than it had been in a while! So, I found myself hooked on Kombucha with no where to get it from (my friend lives over an hour away from me). Lucky for me, she told me that her friend had just given her part of her SCOBY--the Kombucha starter culture--so she could make her own Kombucha. The SCOBY reproduces and you can share it with friends. Last week, my friend brought me my own SCOBY!

My new SCOBY! It's like an organ floating in a jar!

After getting over the weirdness of my new creepy Thing-In-A-Jar, the first thing I had to do was feed it. The SCOBY eats tea and sugar, so I had to steep the tea, mix in the sugar, and add it to the big jar. (Well, it's a bit more scientific than that, but it is pretty simple.) Then, I put the Scoby in its new home where it was to sit and reflect with Buddha for one week.

SCOBY chilling with Buddha.

After a week, it's time to check and see if the Kombucha is ready for bottling. Today was the big day, so I tentatively took a spoonful and, lo and behold, it actually tasted like Kombucha! (Why was I surprised?!) That meant it was time for bottling! My friend gave me four old Grolsch beer bottles to use and I had enough of my Kombucha to fill up three bottles.

Trying not to make a mess!

Success! My very own Kombucha!

So now the bottles are going to their happy place for a week (I just leave them alone), then they can go in the fridge, and, Voila! Kombucha! Next Monday it will be time to taste my Kombucha, and bottle up the second batch!


Here are some Kombucha links if you're interested in learning more:
http://www.organic-kombucha.com/teakombucha2.htmlhttp://www.kombuchacultures.com/index.html
http://www.nytimes.com/2010/03/25/fashion/25Tea.html

This is my favorite store bought Kombucha, but it's pricey, so don't get hooked ;)

Yesterday and Today

Yesterday, I had to take four--yes, four--antibiotics because of my babesia relapse. I was so exhausted, but not nearly as badly as I expected. I could still function, although I certainly didn't feel well. The kids watched a lot more movies than I would like to admit, but sometimes you've just got to do what you've got to do!

I used my sauna last night and it really made me feel better. I sweated more than normal and I wonder if that meant I had extra toxins in my body; maybe it was just a coincidence, though. Today, I feel loads better! Was it the extra dose of Lariam? Was it the sauna? Or am I just having a good day? Who knows? What matters is that I feel great today! 

Relapse

In my previous post, I mentioned the big "r" word: relapse. It's sad to post this, but it's undeniable--many of my symptoms are back. I was functioning at around 90% for a few months, and now I'm down to around 60% and declining a little more each day.

It has been a gradual decline over the past few weeks, and I am grateful that I've had time to adjust to one or two symptoms at a time. If you've ever had to take pain medicine and you've felt the exact moment of blinding pain when your medicine wore off, you may understand what I mean. Having all of my symptoms come back at once would be simply hellish.

There are a few things that happened that I believe caused me to relapse. The first thing that happened was that I got a massage after not having one for over a month (because I had been feeling so well). Many people with Lyme Disease Herx from massages, but--maybe because I've always gotten them two or three times a month--I don't usually Herx from them.

The second thing that happened was that since I was feeling so well, I did two weeks off of antibiotics instead of my normal one week off (with my doctor's permission, of course). When I started feeling well again and functioning pretty close to my old self again, it became extremely frustrating to continue taking massive doses of medicine. Also, we were going out of town to go camping and I didn't want the hassle of antibiotics to mess up my trip. Lesson learned: A little bit of an inconvenience is much better than a relapse. My body was not ready for two weeks off.

I believe that the biggest factor causing my backslide is stress. I'm doing my best to reduce as much stress as possible, which--as everyone knows--is easier said than done. And finally, the last thing that caused my relapse is that I've let my diet slide. And by "let it slide," I mean I'm eating gluten, dairy, and sugar again. Every day I try to get back on the Lyme diet, but every day temptation gets the better of me. I keep trying, though. I truly need to go to sugar rehab!

Even though I'm relapsing, at this point I can still function. I can drive and I can still take care of my kids. But over the last few days, I've seen a bigger increase in my symptoms and a bigger decrease in my energy. I told my husband the other day to think of me as a character in a video game with an energy bar over my head. I told him I had about 2 out of 5 bars of energy left, although that number fluctuates greatly during the course of a day. It sure would make my life easier if other people could see my energy bar!

Lymie vs. Healthy Person

I spoke with my doctor on the phone yesterday and the two-weeks-on-antibiotics-and-two-weeks-off plan has been abandoned. I'm back to three weeks on and one week off.  She also put me on a once-a-week dose of Larium in addition to my other antibiotics. That means one day a week, I will take four antibiotics, instead of three! Ay dios mio!

My symptoms are indicative that my Babesia is flaring up again. My night sweats are back; my headaches, leg pain and joint pain are back; etc. Larium is the medicine that caused a stronger Herx in my body than any other medicine, but, ultimately, it is the one that gave me my life back. I was pretty exhausted today, but I was able to push through the pain and fatigue of another medicine. Work your  magic, Larium!

Finding Out You Have Lyme Disease

                ** This post is dedicated to my new Lyme friend, Melissa **



Desperation, fear, anger, uncertainty, hope, relief--finding out you have chronic Lyme disease will do a number on your emotions. I remember clearly the phone call from my doctor, "Your Lyme test came back positive." That day will forever be etched into my memory. I remember perfectly the relief, the tears, the anguish, THE FEAR!

If I could scoop each one of you up into my arms and hold you tight, I would! I would tell you what I wish someone would have told me about Lyme treatment: It's going to be hard--perhaps the hardest thing you've ever had to do in your life--but you are going to fight with all you've got, and you are going to do it! Believe in yourself and NEVER GIVE UP!

One of the first and most important things you can do (if you don't already) is start loving and respecting your body--it is going to be fighting very, very hard for you. You may feel incredibly angry and disappointed at your body because you are sick and unable to do the things that you want to do. That is normal! But if you can change your focus to what your body is doing for you, instead of what your body can't do, it can make a huge difference in your attitude. Your body is fighting a war for you even though you can't see it. Most of us would never talk to a loved one the way we talk about our own bodies! Be proud of your body!

You have likely figured out that everything about Lyme disease is controversial. Sadly, there are going to be people in your life that don't support your diagnosis. (This very blog was inspired by one of those people!) Though it is very, very hard, the quicker you can distance yourself from the negative people in your life, the easier your recovery will be for you. Surround yourself with people who are kind and compassionate and who will lift you up as you go through treatment. Often times, the negative people are well-meaning family members, and you may have to make some tough decisions. Your health is worth it!

A very helpful thing to do is to find a Lyme disease support group-- whether in your city, online, or both. There are many wonderful blogs out there about Lyme disease. I have linked several on the right to get you started. Again, I caution you to try to avoid surrounding yourself with negative people. Many people with Lyme grow very bitter about being so sick and you yourself may be struggling to keep your head above water. Surrounding yourself with negative people who are battling this difficult disease can make it hard for you to keep up hope. Look for people who inspire you and give you courage! Remember, also, that reaching out to others who are struggling with Lyme can help you, too.

I won't sugar coat it, Lyme disease treatment is hard. But fighting to get your health back is worth it and it is possible. There are going to be a lot of bumps in the road. There will be times when you want to throw in the towel. But it should be said again, NEVER GIVE UP HOPE! The best thing I ever read about having a chronic illness was this, "Never, ever give up: Your breakthrough might be right around the corner!" (I wish I could remember where I read that so I can give credit to the wise person who wrote it!)

Lyme treatment involves a lot of trial and error. There is no one treatment that works for everyone. This can be very discouraging, but with each new medicine that you try, try to remind yourself that it could be the one that brings you back to health. You never know until you try!

The beginning of treatment is hard, because you have to face the fear of the unknown. It's likely to be a long and slow journey, but you have to start somewhere! So I leave you with this quote from Lao Tzu:

“A journey of a thousand miles must begin with a single step.”

Wisdom Tea

Yesterday, I walked almost a mile. Not once, but twice in one day! After feeling so wonderful for a few weeks now, yesterday I was filled to the brim with hopes and dreams. On walk number two, I found myself dreaming....I can have a horse again, soon.....I can go backpacking this summer....I can fulfill my ten-plus-years-long dream of going to school to become a massage therapist....

Today started off well. I went to the Farmer's Market; I ran some errands. I got very tired, though, and my vision started getting funky, so I knew it was time to come home and rest. Then it was time to take my meds. This is day three of Bactrim. A good friend of mine had a wedding shower this afternoon and I had to scrape myself off the ground to get there. I made it, but really, who was I kidding?? Conversation is nearly impossible when I feel like that!

I came home and I crashed in a heap; I barely made it. The words I had cheerfully piped to friends this morning at the Farmer's Market cruelly echoed through my head, "I'm feeling great! I'm feeling a lot better! I had a breakthrough in treatment!"

Like a thief in the night, Lyme disease steals your dreams away from you. It takes them and it tosses them out into the ocean, where they quietly disappear--down, down, down to the bottom. Lyme disease takes your dreams and throws them off a cliff, shattering them into a million pieces, right before your very eyes. Lyme disease smacks you in the face over and over again. It kicks you while you're down.

It is so hard to go from one extreme to the other. I know this part is temporary: I am Herxing. I believe with all of my heart that good days will come back. I know I can get through this...But right now I'm just really angry. I will pick myself back up and dust myself off like I always do, but I'm not quite ready to do that yet. I just want to sit quietly with my feelings for a bit. I am what I am, and right now that is angry.

And funnily enough, as I gaze down at my tea, a little slip of paper catches my eye. I have forgotten it is wisdom tea: There is a tiny quote dangling over the edge of my mug. It reads: May this day bring you peace, tranquility, and harmony. Thank you universe for that tiny little hug of comfort when I need it most. And just like that, my anger has vanished...

Lyme Disease Awareness Month

Many people have asked me how they can help raise awareness for Lyme disease. Well, May just so happens to be Lyme Disease Awareness Month! If you're looking for a simple, yet profound way to help, click on any of the Lyme blogs I have linked on the right and leave an encouraging comment to my Lyme sisters and brothers, as you will quickly see that most are struggling to keep their head above water.

Chronic Lyme disease is a very painful disease; so painful, in fact, that the number one cause of death from Lyme disease is suicide! Lyme is a tough battle, and your kind words can help someone more than you could ever imagine!

There are many other ways you can help: you can spread the word by sharing my blog, you could make a donation to my fundraising page for Lyme research or to Columbia University's Lyme and Tick- Borne Diseases Research Center, or you could even join in the fun by turning your Facebook or Myspace profile lime green for the month of May.

Thanks for all of your love and support!

What I Wish I Would Have Known About Lyme Disease

The most frustrating part for me of having Lyme disease is the lack of awareness surrounding the disease. Apart from what they've learned from me, my friends and family don't know anything about my disease. In fact, the only people I know of that know anything about Lyme disease are either those who have it, or those who have a loved one with it. It is spreading like wildfire, while the task of educating people about Lyme disease has been left to those of us who have the disease.

Misdiagnosis is a huge problem with this disease. Doctors are not looking for it. It took countless doctors before I got the correct diagnosis. Because of that mistake, I might not ever be totally well again. The Lyme bacteria had time to disseminate throughout my entire body: it's in my brain, my organs, my joints, etc. What could have been easily treated in the beginning now causes me excruciating pain every day that may never go away.

The number of cases of Lyme disease are on the rise and it is believed to be spreading more rapidly than AIDS. What I wish I would have known about Lyme disease is that it is preventable! Our children learn in school about preventing AIDS, doing self-exams for cancer, and the importance of safe sex. Did you know that children have the highest risk of contracting Lyme disease? So why aren't our schools teaching them the simple ways to prevent Lyme disease, how to properly remove a tick, and the warning signs of Lyme disease?

Our children are not allowed to attend school until all of their vaccinations against childhood diseases are up to date. While there is currently no vaccination against Lyme disease, prevention is key. If our children were taught in school how to prevent tick bites in the first place, and properly educated on what to do if they do discover an attached tick, we could stop this rapidly spreading, and PREVENTABLE, disease in its tracks. The less we are educated about it, the faster it is going to continue spreading.

Sadly, lack of education about Lyme disease means very little money is going into research for this disease. Without that, there is no hope for a cure for people like me and countless others who have very complicated cases due to misdiagnosis (which is very common). Please check out this website for Columbia University Medical Center's Lyme and Tick-Born Diseases Research Center and consider making a donation for Lyme disease research.

The most important thing you can do is to educate yourself and your children. Remember, Lyme disease is found in every single state in the United States and many other countries throughout the world. It is usually easily treatable in its early stages. However, when it is left untreated for too long, usually because doctors aren't recognizing the signs, it turns into a painful and crippling disease that is very difficult, sometimes impossible, to eradicate.

I hope you'll take the time to click on the links I've included throughout this post. If I could prevent just one person from going through what I went through, it would be worth all of this pain! Knowing about Lyme disease could have saved me from going through the agony of this disease. I hope you will repost this and help me spread awareness for Lyme disease.

My Two Cents

Yesterday, an article was put out by the Chicago Tribune about a very touchy subject: the decades-long war that has been waging over the existence of chronic Lyme Disease. If you haven't read the article, you can do so here. This is my response to the article:

Lyme Disease is riddled with politics. A fierce and ugly battle has been raging for years over the very existence of chronic Lyme Disease. Columbia University Medical Center's Lyme and Tick-Borne Diseases Research Center explains part of the Lyme controversy here.

While scientists, doctors, insurance companies, government agencies, and anyone else who can join in, are so busy fighting over every single aspect of the disease, the victims, those caught in the middle of the Lyme war, are left to gather dust in the corner. We are expected to wait and suffer quietly, while the never-ending debate rages on over how to handle us. In the meantime, our stories of endless pain and agony are being swept under the rug.

Having Lyme Disease makes me feel like a young child whose parents are on the verge of a nasty divorce. Both Mom and Dad are pulling my arms in different directions, because they both know what's best for me, but they can't seem to agree on the same thing. When it comes to Lyme Disease, everyone wants to be the parent, everyone knows best, and everyone wants to be right. "Chronic Lyme exists." "No it doesn't." "Yes it does." Sometimes, when there is such a fuss over whether or not someone is right, you forget what you're even fighting about. And if this battle goes on much longer, no one with Lyme Disease will have any arms left! It is time to take a breather, stop fighting, and do more research!

There is a gaping hole in the Tribune's story that really needs to be addressed. At the top of the article, there is a picture of a man who was misdiagnosed as having Lyme Disease, when in fact it turns out he has been suffering from cancer. It is, of course, a heartbreaking story, but we are not shown the other side of the story: those who have Lyme Disease, but have been misdiagnosed--the very REASON that Lyme Disease becomes chronic.

Most doctors do agree that when caught and treated early, Lyme Disease is pretty easy to cure. The problem lies in what to do with those of us, like me, who do have Lyme Disease, have already done our short course of antibiotics, and aren't cured. The tests show it's still in our bodies and our symptoms are still there. Our symptoms do not lie. Is a cancer patient abandoned if one round of chemo doesn't cure them?

According to a study published by the New England Journal of Medicine, "There is considerable impairment of health-related quality of life among patients with persistent symptoms despite previous antibiotic treatment for acute Lyme disease. However, in these two trials, treatment with intravenous and oral antibiotics for 90 days did not improve symptoms more than placebo." The problem lies in a lack of effective treatment for the chronic form of Lyme Disease, not whether or not a chronic form of the disease actually exists.

There is so much that is unknown about Lyme Disease, especially those cases like mine that have gone misdiagnosed for months or years. The sad thing is, many people (doctors included) will read the Chicago Tribune's article, and believe every word of it, when in reality, scientists have only touched the tip of the iceberg in what is known about Lyme Disease.

I have enough pain in my body already from Lyme Disease without adding all of this controversy on top of it. To me, the answer is this: stop bashing each other and do more research!

Sorry!

Tomorrow I take my second dose of doxycycline. It has only been four months since I got my diagnosis of Lyme Disease, and I am frustratingly early into treatment. My body is insisting that we move even slower than normal, at a snail's pace.

I feel like one of the pawns in the board game Sorry!: every time I start moving forward, I get a "move four spaces backward" card. I'm trying hard to be patient; really I am. Each step I take is one step closer to where I need to be -- Lyme free! -- and one step farther away from where I started.

Good riddance, start line! Doxycyline and I are about to play a "move forward 12 spaces" card. Now if these damn spirochetes (the little buggers that are responsible for making me sick!) try to Sorry! me again, they're the ones that are going to be Sorry!

Three's Company

This morning, my gorgeous pink pill met her two hunky new boyfriends for the first time: The Yellow Fellows. I think they look great together, don't you? Rumor has it that two new hunks will be stopping by tonight for a late-night rendezvous!

Whatever Tomorrow May Bring

If you keep up with my blog, you may recall that one of my favorite quotes is this one by Emerson: "Write it on your heart that every day is the best day in the year." On my darkest days, usually when I'm in a great deal of pain, I strive to put Emerson's words of wisdom into practice. I hate to think about how much time I could easily waste away to the pain of Lyme Disease. As much as I want it to, time does not wait for me to feel better! In fact, like some kind of cruel cosmic joke, time seems to be moving at the speed of a freight train since I got sick, and my two children are sprouting quicker than ever. Pain or not, I don't want to miss a thing!

That being said, tomorrow is my big day: I start a new medicine, doxycycline. I will not lie-I'm terrified. I'm not ready for another big herx already. I don't know what tomorrow will bring. The hardest part is knowing that I have to get worse to get better. Until someone finds a better way (and whoever is working on that, PLEASE hurry!), that's just the way treatment of Lyme Disease goes.

My goal now is to cling to my favorite quote, both today as I'm scared of what's to come, and tomorrow as I'm overcome with a major increase in symptoms and slammed with pain. I will readjust my life again until I settle into a new "normal." I will strive to find laughter and joy every day, pain or not. I will find time to laugh with my children every day and I will not miss out on life while I wait for my health to return. I will hang on to the hope that doxycycline will carry me farther than azithromycin has and bring me closer to my goal of beating this awful disease.

Healthy or not, you never know what tomorrow may bring; neither are you promised a tomorrow. What will you do with your today?