Summer is here & so are the ticks

I think that if you've been following my Story along through my blog or otherwise that you've realized I am very passionate about the subject of Lyme disease. Most importantly, I am all about prevention. This disease is a serious problem and it isn't just a "small" one confined to a select few states in the Midwest. It is essentially everywhere, all over the world. It is an epidemic in the United States and thought to be the fastest growing infectious disease in this country. It is also one of the most complicated diseases to diagnose, test, and treat. Thousands of cases are improperly diagnosed or missed altogether.

After a recent dentist visit and the questions that arose about my medical history and Lyme disease, I realized that it was time for me to write about a very important topic to me. The safe removal of a tick and early detection.

Because that is where it all begins really.

With summer finally arriving!!, so have the deer ticks, unfortunately. They are what transmit to humans and animals the spirochetal bacteria infection of Lyme disease, Borrelia burgdoferi, when they bite & burrow their head into our skin. Plus, there are over three hundred species of borrelia that are known to exist worldwide. If you have Lyme disease, you also have to contend with coinfections.

They are now finding out that flees, mosquitoes, and mites also carry the infection.

It is a blood-borne infection that is transmitted like any other one, including ones like HIV and Hepatitis. That means it is sexually transmitted, as well as passed along through pregnancy and breastfeeding. They don't filter through donated blood at Blood Centers for Lyme disease before it is transfused.

Our kids have a 50% chance of having it.




Most ticks don't carry diseases, and most bites don't cause serious health problems, but it is important to be knowledgeable and aware of how to remove a tick as soon as you find it to help you avoid contacting Lyme disease in the first place.

It is much more easily treatable if it is caught early. I cannot stress this enough. I had it for so many years before I got properly diagnosed that it has become chronic for me. Incurable, essentially. It has created such havoc on my body that I, also, have three autoimmune diseases that have come along with it.

There are many "ideas" about the best way to remove a tick, one of the most common tricks being to light it up with a match! (I understand ~... trust me! ... you are thinking: "Burn that sucker!" right? They are pretty creepy!) However, even being married to a Firefighter for the past 16 years, I would strongly suggest NOT using this method. The truth is, this can and probably will only increase your chance for infection because you could end up releasing the icky fluid right into your body! Exactly what you do not want to do.

Same goes for "smothering" the tick with petroleum jelly, nail polish, rubbing alcohol or the like.

When you return home from areas where ticks might live, carefully examine your skin and scalp for ticks. Check your pet & kids, too, especially babies. Be diligent about looking at hard to reach places where one wouldn't commonly notice a bite. Ticks can be so small that it is even hard to see them. In fact, they can be as small as the size of a sesame seed! This makes it very hard to tell if you even removed its head or not.

So here is my list of "steps" of removing a tick:

1. Use a fine pointed tweezers and grab the tick's head firmly as close to the skin as possible where the bite is. Remember to wear latex gloves when doing this. Don't grab it around its body. If you don't have a tweezers, then put on gloves or cover your hands with tissue paper, then use your fingers. Do not handle the tick with bare hands ever.
2. Gently pull the tick straight out until its mouth lets go of your skin. Do not twist or "unscrew" the tick. This may separate the tick's head from its body and leave parts of its mouth in your skin.
3. It is critical to NOT squeeze the tick body at any time -- this can inject more potential pathogens into you.
4. Look at the tick in your tweezers to ensure all feet, body and head are in place. 
5. Cleanse the skin with mild soap and water.You can then apply antibiotic ointment if you wish.
6. Put the tick in a jar of alcohol or a ziplock bag for later identification if necessary.

After you've done all of this, the more important thing to pay extremely close attention to is how you are feeling physically in the next few weeks because the early "symptoms" of Lyme disease can be mild and easily overlooked. The high majority of people don't even remember the famous "bull's-eye rash" or even getting bit! (yes, that's me!)

Symptoms of infection may include:

• Pain, swelling, redness, or warmth around the area.
• Red streaks leading from the area.
• Pus draining from the area.
• Swollen lymph nodes in the neck, armpit, or groin.
• Fever or chills.

If you have a rash, headache, joint pain, fever, or flu-like symptoms, this could mean you have an something going on related to a tick bite. If you have any of these symptoms, call your doctor.

The usual treatment is a round of antibiotics initially for a few weeks. Unfortunately, most times the antibiotic isn't used long enough, or it isn't the right one. Or like for me, they didn't help at all.

The bacteria can go dormant, traveling from your blood to your organs and tissues. Not good.

If you or someone you know experiences a tick bite, I would be happy to pass along some recommendations I have of health care practitioners that I feel are knowledgeable and well-trained in diagnosing, testing & treating Lyme disease. It is a very complicated and complex disease, even for practitioners.

I hope this information only helps you have a fun and safe summer, and doesn't scare you to death of ticks, mosquitoes, and creepy-crawly things or even Lyme disease! :)

P.S: {added 7/10/11} Please click here to read an article that the Milwaukee Journal Sentinel had in their paper, which I found very interesting and helpful to pass along my readers, especially if you live in Wisconsin!

My battle with Lyme Disease

{A friendly warning: a long post because it's unfortunately a long story}


Who would have thought that a tiny, black, creepy little bug, could cause such havoc on the human body? That a bug, smaller than your pinky fingernail, could totally turn your life upside down? Well, definitely not me! Gosh, growing up in Wisconsin, it seemed like everyone knew about ticks and Lyme Disease. It really never seemed to be a big deal really. You were just warned to pay extra special attention in the summer. Mostly, I remember us worrying more for our dogs, than for us. No one ever worried about getting bit or any long terms effects. As kids, we vacationed "up north" near Montello, WI and it was very, very rare to not see us kids running around at night with our flashlights. Or ever not being outside. It was great fun!

When Megan was just a baby, she had a tick stuck on her head. Mark did his magic and took care of it. Never thought about it again, especially after our dog, Cally, died in 2007.

That was until last summer when one test turned things around for me.

You see, I had been struggling with chronic health problems up until that point for a long, long time. Since high school, I never felt quite right; always so, so fatigued. I battled with depression for years. In college I would schedule my classes around my nap time. I thought everyone operated this way. It never dawned on me that people didn't feel as sick as I did.

In a few years time, I completed my Teaching Degree when Matthew and Megan were still very small. My student teaching involved 4 months of full-time work while Mark worked the weekends to compensate. During this time, I was also in the midst of the roller coaster ride of grief. Then along came our special blessing, Luke, after a long time of waiting. His early life brought many challenges for both of us battling thrush and me needing a kidney stone removed when he was just 2 weeks old. In 2007, I lost my mom to cancer and our beloved dog, Cally, went to Rainbow Bridge. Do you think God was trying to get my attention? Only He knows why it took so much.

I continued to push myself despite feeling worse and worse. After all, I was trying to raise a family! I couldn't just take some sick days. We all just tried to adapt to "mom is always sick & can't get better" mentality. What a hopeless situation we were in. At least that is how it looked and felt.

It was all just too much for my poor body and soul to handle. Our bodies weren't designed to withstand so many years of emotional, spiritual, and physical stress. So mine shut down. I had kept myself so busy that I didn't notice how much the years of stress were damaging my being, on all levels.

I recall the exact moment the crash came: I was riding on a spinning bike right after Christmas 2007 trying to burn off those calories we all gain. All of a sudden, I felt this overwhelming dark cloud engulf me, stopping me dead in my tracks (or shall I say dead in my peddle stroke?) I remember thinking, "Something is just not right with me."

This began the quest to find out what was wrong with me. I've had every "test" under the sun, many diagnoses, hours and hours on the Internet searching for answers. How many times I'd sit in front of a doctor and he'd be shaking his head saying, "I just don't know what to do anymore."  I started going from doctor to doctor to doctor....even for our 14-year wedding anniversary, Mark & I drove to see a "Specialist" in Pennsylvania. I was that desperate to get well. I would do whatever it took.

So, I spent about 3 years going around in circles, either getting worse from the crazy medications and doses, or I didn't have any improvements at all. I was swallowing so many pills and supplements that I'd forget what I'd taken or not taken. All awhile we were watching our money fly out the window. I was stuck in a vicious never ending cycle of hopelessness and despair. There seemed no way out, no place else to turn.

The best way I can describe how I've felt the majority of my life, and honestly, still do on a daily basis is to compare it to how it felt when you were a teenager or a college student and you pulled an "all-nighter". Maybe some of you still do that, but unless you have a baby, I think that is something you might want to fix :) That just cannot be good for the body. Anyway, do you remember how you felt that next day? Like a truck hit you? Like it took so much energy to even put two thoughts together, let alone function in life? Now imagine feeling that way, yet still having to work or take care of a family or go to school or even take care of simple tasks such as laundry and eating? And it's not only the debilitating fatigue. That is just the main common symptom all people with disease share. Add on a host of many other symptoms, many times excruciating pain. That is what people with chronic illness go through on a daily basis, sometimes even hourly.

Usually a good nights sleep would take care of the problem. Not for me, nor for many, many people out there suffering with ill health. No matter how much sleep I could ever possibly get would never, ever make me feel rested. I somehow have been able to keep going, one foot in front of the other. In God's great mercy, strength, and faithfulness, He is carrying me.

Finally, I went to my regular doctor for a yearly "check-up" and she ended up referring me to a Hematologist. During my consult, he said something like, "It looks to me like you have some sort of chronic infection or virus that has worn down your immune system." He ran some additional tests. All I knew was that I was very, very sick and had no clear direction anymore on how to get better.

I came home and thought about what he said, and then I remembered in all my years of diligently searching for answers on the Internet, I recalled reading "if you are chronically ill and have not been able to get better, you should be tested for Lyme Disease." My immediate thought was, "That's not me. I don't remember being bit by a tick or having a rash. I don't have joint pain." But then again, I did frolic in the up north woods every summer as a child. Hmmm...

This began my research into the best, most accurate, recommended test, treatment and doctor for Lyme Disease in Wisconsin. (Can you tell I'm a researcher?) My eyes were opened to the vast world of those suffering with Lyme. I already knew that the normal lab test your doctor would run was highly inaccurate - many, many false negatives. I figured I might as well get the most accurate test to just rule it out, never ever expecting that I had it. And, plus, out of the 15+ doctors I went to, no one ever suggested this as even a remote possibility.

When the results came back positive, I almost fell over. By this point, I knew all too well what this disease entailed, and I didn't even want to go there. A tick-borne bacteria infection that overtakes your body. A disease that some say you can never get rid of. A disease which carries right along with it, many, many other infections. The controversy about what treatment type is best is a confusing, never-ending cycle.

My Lyme Specialist thinks that I've had the disease for over 20 years. The cause of my other diseases: Celiac Disease, Hashimoto's, Hypopituitary, and Addison's Disease.  Finally, an answer, some direction. The treatment: to start high doses of a various antibiotics immediately for a long period of time, and to keep trying different combinations until something worked. OK - let's go. Let's eradicate this sucker and his friends.....that was in July 2009.

After 8 months of treatment, and no progress made, plus the heaviness of life finally taking its toll, I reached a place of complete brokenness, both in body and spirit. I knew the only way I could keep going was to look Up and reach Out. To surrender and let God put the pieces back together in His way, not mine.

So I began the process of renewing my mind and heart: to finally accept a life of sickness. I knew that I would somehow have to find a way to try and live with it, instead of fighting it. However, I also knew that I couldn't allow my Spirit to also stay in such a sick, broken place, like my body. That would've been no life at all, for me or my family. I knew I would have to work hard at finding joy in the land of the living in the physical condition I was in, and that I couldn't rely on my strength anymore. I pressed on and pressed forward. But deep in my heart, there was always this little nugget of Truth that God was still up to something. So that's what I clung to: HOPE.

Soon afterward, I was referred to Dr. Brian Borden in Fond du Lac. He had a reputation of using alternative means along with antibiotics to successfully eradicate Lyme Disease. I knew he was my last chance, and so did he. There was nowhere else to go. Thankfully, and with praise, I must report that since March I have  been working with 3 doctors. I like to think of them as my "team." They have finally pieced together a road map towards physical healing for me.

Finally, for the first time ever, I've seen slight improvements; many ups and downs. Nothing earth-shattering or else you would have heard about it by now. I may actually have hired the local news to do a story on me! Anyway, it is a very, very slow process. I've accepted that I still have a long way to go; that I can only be in control of some things.  I do know that physical healing is now within my grasp; I can feel it. I just need to be patient in the waiting and to be open to what God has in store for me in the meantime. As much as I wanted a spontaneous miracle to heal me physically (and still do!), I know that there were and are still many more pressing matters of the heart that need to be addressed first.

I need to make myself clear: Lyme Disease is an epidemic, especially in states like Wisconsin. Its symptoms mimic anything from fibromyalgia, arthritis, chronic fatigue syndrome to Parkinson's, autism, and multiple sclerosis plus many more. People have been diagnosed with a disease, but are getting worse or not getting better. Or they get labeled with "chronic fatigue syndrome," which has no cure. There are so few trained doctors who understand the testing, diagnosis and treatment of this complex disease. And the general public is clueless. You are one of the lucky ones if you notice a bite or rash and get treated right away. And even then, your standard blood test might still be negative. Unfortunately, a round of antibiotics might not do the trick or the bacteria can go dormant in your body for years. It will rear its ugly head by creating other diseases, and then your body has woven itself into a very tangled web of disease. Can you tell I'm just a little passionate about this subject? ;-)

Lyme Disease is also frustrating to have because people with this disease don't look "sick" so people assume all is well. It is a disease that can make one feel lonely, misunderstood, and even more hopeless. The feeling that you have to convince people that you really, truly are sick; that it isn't all in your head. To feel like you have to come with a another good explanation for canceling plans besides always saying, "I feel sick....still."

Phew! It sure has been a long journey, and I'm still a work in progress. Aren't we all? Now you've gotten the full physical health story. I've met many wonderful people along the way (I like to call them angels) at just the perfect time; from all over the United States right to my backdoor. Thank you to those who have loved and encouraged me, offered me support, helped problem solve, or just been there to listen because sometimes there isn't anything to say except, "I'm here for you." I am also thankful for the many doctors who tried to help me the best they knew how.

Even during what seems like a hopeless situation, there is always Hope. What I've learned along the way is that I have to continue to trust God each step of the way. And Trusting is the hardest step to take of all, but the most important. I encourage you to also trust in His plan for your life. He gives us hope and a future, with no plans to harm us, for all of us to prosper. He wants to bless us and pour out His Love on us.

Cling to that if you are in the midst of a trial right now that feels like its crushing you. If you feel like your prayers are just flying up to nowhere. When all you are left with is sitting in the Waiting Room, desperately crying out to God from the depths of your soul to free you from this trial (s). And God remains silent (even though He's really not). While you are waiting....waiting....waiting....continue to pray to Him, serve Him, and stay strong. Believe that He is good and faithful and overflowing with Love.

And never, ever, let go of HOPE because sometimes, that's all we have. And really, when it comes down to it, that is our anchor. It's what keeps us grounded, steady, and strong. It's what helps carry us over the finish line.

For much, much more detailed, helpful information about Lyme disease, please see (http://www.lymebytes.blogspot.com)