What Did I Expect?

Let me start by giving thanks that for each new day that God gives me. It would be easy for me to use this blog completely as a means to complain and express how horrible things can be. However, there is a bigger picture and I don't want to get stuck on the speck that I don't like. That being said, I also believe it is important to be real and share that sometimes circumstances in life just suck.

The past couple of weeks have been particularly difficult for me physically and emotionally. Unfortunately these two things thrive off of one another. I can feel bad, get upset about feeling bad and in return symptoms (especially neurological) get worse. This is why I recommend that anyone with Lyme have a psychologist they meet with regularly! It's a tough road to recovery and mental health plays a vital role.

For the past several weeks my symptoms of dizziness, shaking, and fatigue have been bad. I have felt like I have had the flu but worse. Several times I was so dizzy that I fell over. Of course with falling and major painful body aches I was afraid I was going to need to get my cane out again; something I haven't had to use for over a month now! Perhaps one of the most frustrating things was that I could barely get my kids ready for school, and I couldn't get them there because I couldn't drive in the condition I was in. This meant calling on others to help me out, and that is always difficult for me.

Asking people for help is not something anyone really wants to do. It means admitting that you are not completely self-sufficient and that you can't do life on your own. I personally HATE calling my friends and family and asking for help. I know it is inconvenient for them. Plus, it lets them know that I am not 100% and that is a bummer too. There is the good news: asking for help kills pride and gives others a chance to serve. Which of course is biblical and essential for spiritual growth and character building.

Since I have been doing so so so much better over the past couple of months, I wanted to brush my continued struggle under the rug. I wanted everyone, including myself, to believe I was well, that treatment was exactly what I needed, and no one need be concerned anymore. Treatment is exactly what I needed, but being 100% after a few months is unrealistic with the way that Lyme has ravished my body. My latest tests results showed improvement in areas! YAY!! However, the Spirochetes are still present. I am still going to Herx and sometimes at this point in the game and with the supplements/meds I am on, a Herx can last a couple of weeks.

Thanksgiving

"May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit." 
- Romans 15:13

My mother-in-law has been an amazing help to myself and my family for the past 6 months. She graciously comes and stays with us for several weeks at a time in order to help me get the rest I need to heal quicker. I can't begin to sing her praises and thank God for selflessness. A couple of weeks ago she went back home to do some needed work at her house and to give my husband and I some time alone while my parents took the kids to Disney. As life's twists and turns would have it, this past Thursday night she fell and broke her hip. This was extremely distressing news as she was in incredible pain and we live so far away we aren't able to be with her.

I am unable to drive long distances, I had been sick for 2 days prior, and my husband couldn't take off work. So, immediately my mom offered to drop her plans and take me to be with my mother-in-law and help me find her a recovery center. I was really worried about finding her a good recovery home that didn't make her feel like she was in a nursing home per se'. My sister and my friend loving loving arranged to take care of my kids until my husband was off work. I can't begin to tell you how thankful I was for family and friends that were willing to help out!

On the way to the hospital we stopped and ate dinner. Now, just so you know, eating out is a mess for people with Celiac!! Luckily a lot of places now have allergy lists for their food, but somehow I misread something or my food got cross-contaminated and I immediately got sick. Ugh!!! My mom had never seen this happen and she was stunned what an affect gluten can have on a person.

Mom and I arrived at the hospital that evening. My mother-in-law was in so much pain and could hardly move. We were able to pray with her and visit for awhile before we left for the night. Yet another friend graciously housed us for the night and fixed us breakfast in the morning. That night the trip and the gluten had really taken a tole on my body, so I had to go straight to bed.

The next day was a whirl wind visiting my mother-in-law and trying to find her the best place to stay. Let me just express to you how good God is!!! My mom just happened to think to call a friend that was familiar with several of the care centers around town, because her friend visits people who are sick. We called her and she immediately narrowed our list of 12 places down to 2. On top of that, when we went to see the place the admissions director just happened to be there (it was a Saturday, her day off). She took the time to take us around and explain how things worked. She was so very helpful and we felt like God had just made one of my primary goals of coming super easy. To top that off one of my mom's really good friends had gone through recovery at this place and also sang its praises.

When we got back to the hospital my mother-in-law was so relieved to hear we had found a good place and was nearly looking forward to going to the care center. Such a blessing, because as you can imagine no one wants to have to go to a "nursing home" and no one wants to put their loved one in a "nursing home." We were able to leave with my mother-in-law in good spirits and assurance that God was taking care of her.

Since then…this week has been really difficult. I realized that I am no where near able to travel that far right now. My body has been hurting and my symptoms have been worse. Luckily I have friends who helped me get my kids to school and take care of them for me. I have gotten some much needed rest and started to get my stamina back.

This week couldn't have made me more thankful for the joy and peace that comes with trusting in God. He feels me with hope, even when circumstances don't look hopeful. He gives me the strength to face every moment of every day; something very challenging when living with Lyme. He places people in our path to guide, help, and support when we need it most. This Thanksgiving I am most thankful the good and gracious God I serve.

Grumbles & Gratitude

I haven't written for sometime and there are always mixed reasons when I don't write. Usually, it is because I am trying to spend all of my healthy moments with my family and then when I don't feel good, I just don't feel like writing.

The past couple of weeks I have been struggling to look at the sunshine through the rain. My health has been doing so so so much better. However, what seems to be happening when I feel better is that I expect myself to do more, meanwhile forgetting that I am not 100%. Then I get super frustrated when I realize I am not 100% and that pacing myself and patience are still vital to full recovery. Stay with me while I go on a grumbling rant for a moment…
I am tired of needing help. I am tired of not being able to clean my own house. I am tired of depending on others to help me. I am tired of doctors appointments and drinking nasty things to help heal my body. I am tired of having to say "no" to 4 possible job positions in the past several months, because I am not at a place in life where I can work yet. I am tired of being negative and snippy and losing my temper because I can't seem to express to people what is going on with my emotions. Sometimes appearing well is almost worse than appearing sick, because it is almost impossible for people to understand or know that I am not 100%. And quite frankly, I don't want for anyone to know I am not well yet.

I really believe it can be helpful to express grumbles, but to stay focused on them is not in any way shape or form beneficial. So let me share with you just a few things that I am so thankful for…
I am thankful I serve a living God! I am thankful for salvation and the hope of eternal life with a God who loves us even in our darkest hours! I am thankful for the peace that comes from the Holy Spirit! I am thankful for strength from the word of God! I am thankful for an amazing husband who is so patient and loving regardless of his own stresses in life! I am thankful for 3 healthy and happy kiddos! I am thankful for family and friends who are willing to give up their own time and schedules to help out my family! I am thankful good doctors who have not given up on my recovery! I am thankful for a home and food to eat! I am thankful that my heater and air conditioner work! I am thankful I have been able to go on dates, attend church, and even the Irish Dancers Xmas Concert without getting super sick!!

These blessings far outweigh anything that I could ever begin to grumble about, and I didn't even begin to write the half of them. Yes, life is full of disappointment and hardships and sickness. We live in a broken world. But friends, JOY comes in the morning. Thanks be to God.

Psalm 138

Thanksgiving and Praise

Of David AND now of Kelly Myers And hopefully You too!

1 I give you thanks, O Lord, with my whole heart;
    before the gods I sing your praise;
2 I bow down toward your holy temple
    and give thanks to your name for your steadfast love and your faithfulness;
    for you have exalted your name and your word
    above everything.[a]
3 On the day I called, you answered me,
    you increased my strength of soul.[b]

4 All the kings of the earth shall praise you, O Lord,
    for they have heard the words of your mouth.
5 They shall sing of the ways of the Lord,
    for great is the glory of the Lord.
6 For though the Lord is high, he regards the lowly;
    but the haughty he perceives from far away.

7 Though I walk in the midst of trouble,
    you preserve me against the wrath of my enemies;
you stretch out your hand,
    and your right hand delivers me.
8 The Lord will fulfill his purpose for me;    your steadfast love, O Lord, endures forever.
    Do not forsake the work of your hands.

My Supplement/Medicines

Chronic Lyme is not only most likely under diagnosed but it also is very difficult to treat. That statement has all sorts of controversy in it, so let me just say that this post is directed to those who believe in Chronic Lyme and or who have been diagnosed with it. I have been through several treatments and I want to share with you my latest and why I think it might be of help to you.

First as you may know from previous posts that I went through a series of antibiotic treatments that seemed to help for a while, but in the end just left me with a bad digestive system. Then in the Spring of 2014 I had regressed so badly that I decided to begin an alternative treatment plan. This is something that was very foreign to me and not something I would have typically done as I have always grown up with "western medicine."

I am still doing my ONDAMED and seeing my Chinese Herbalist.

Sweet Relief

It has been almost 2 months since I went to Longevity Health Center in Atlanta and I am happy to say that I am experiencing relief in my symptoms.

During the first month of treatment my symptoms got worse and I felt horrible. I had tics that were manifested in a grunting sound. They would go on and on. They were uncontrollable and very uncomfortable often causing pain in my chest. I had an ONDAMED treatment to help reduce the tics. It took about a week and then they started subsiding. Praise the Lord I am rarely experiencing them now.

In September I sent my blood to Longevity Health Center to be looked at for the 1 month review. Things looked better but the spirochetes were still present. They changed my treatment up and have been focusing on my kidneys and mercury this month. The past two weeks have been the most relief I have experienced in a long long time. I have had more energy. For the first time in over a year I was able to go to church and not be a shaking mess from the sounds and stimulation. I have not had a seizure in a month. This weekend I went to a ball room dancing class and watched 59 kids for 3 hours go nuts at Flipz USA; I am paying for that today, but that I was even able to make it through was amazing.

Today I am resting because I am tired out and my body is responding to the tiredness. BUT…I feel better than I did!!! God is working in my body. I don't know what the next set of treatments will be like, but I am not worried about tomorrow - I am enjoying today.

Living the Real Life

I am glad, I am sad, My facial spasms make me mad.

I would like to tell you that everyday I live I am extremely thankful for all of the blessings God has given me. I would like to tell you that I never focus on the negative and that each morning I jump out of bed with a renewed hope. I think this is the face I try to show people but so I often I am just posing. I am the exact person that Brennan Manning talks about in his book "Posers, Fakers and Wannabes".

I realized

3 Strikes Your Out OR 3rd Times a Charm

Well, it has been about a month since I last wrote. That's a sure way to get people to forget about my blog!!! 
As, you may or may not know over the course of the past year and a half I have tried to get into the Mayo not once, not twice, but three times. The first time was before I got really really sick and was admitted to Barnes Jewish. I was rejected that time I think, because I had not exhausted all of the resources around me. Then the second time was recently. I thought for sure I would get in because I had exhausted all of the resources around me. Within a week of applying to the neurology department I was sent a letter stating that there was nothing more they could do, but if my doctor wanted to talk with the "on-call" doctor about it they could. So, one of my doctors offices called and finally convinced the neurology department to take another look at my case. In no time at all I received a third letter stating they would not see me.

I believe it is easy to look at this as 3 Strikes I am out, there is nothing more for me to do but sit in the dug out and feel dejected. OR, I can choose to look at the Mayo rejecting me 3 times as "3rd Times a Charm" and here is why…

Over the course of the past couple of years I have been blessed to attend a retreat in Atlanta, GA for mom's with adoptive kids called Created 4 Care. The first year one of the leaders of the retreat mentioned how she had been so sick and couldn't walk and had to hire help etc. I wasn't  personally to that state quite yet, but I was very close. When I inquired what she had, I found out she had had Lyme. Shortly after  the retreat, I too was diagnosed with Lyme. This past year I attended the retreat again and the lady was doing awesome. I found out she had never even been treated with antibiotics; even though it took her a year she was all better. AMAZING! I wanted to know where she had gone and what treatment she had done.

In the meantime at the retreat, right after worship, the lady sitting next to me asked me if I had Lyme. Kind of an out of no where question! I told her yes and she proceeded to tell me she had been looking for me because someone had mentioned me to her and that I had Lyme. She was excited to have happened to sit by me (this is not a small conference people) and wanted to talk to me about herself and her friend's experience with Lyme. She had been struggling for years and but she had just gone to a doctor with her friend there in Atlanta and was thinking about going to see him. Her friend had had Lyme and was better after about a year of treatment. Guess what, she went to the same doctor that conference leader had gone to.

So I took this all in and thought it was cool and that I should see what kind of treatment this doctor did and if there was anything like it in MO, because GA is kind of far to be going to the doctor. When I got back I started some alternative treatments and seemed to be getting some better but progress was slow, which is why I finally decided to try the Mayo. I was super unsure about the Mayo and I kept praying and having friends pray about getting in because I believed that if that is where I needed to be God would get me in. However, I felt very very unsettled about it. When I didn't get in I started thinking about this place in GA and started considering going there as a real possibility. I was not content to sit in the dug out just because the Mayo wouldn't get me in. I was not content to go back on antibiotics that would continue to destroy my gut and not heal my Lyme. I was not content to be told that my problems were neuro-psychological when I had therapists telling me they did not believe this to be my issue.

So, I made an appointment and I went to GA. It was about an 11 hour trip that turned into about 13 hours. This might not sound bad but I don't travel well these days so by the time we arrived I was a shaking mess. On the up side it was great to actually be able to spend one-on-one time with my husband for that many hours with no interruptions. I think the appointment is something I am going to have to write about in another post because it is too interesting to not give you details. Right now, I am off to rest. Please check back soon, I have so many blessings to share.

Trust & Quietness

"Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight." -Proverbs 3:5-6

"…In quietness and trust is your strength." -Isaiah 30:15

Anyone who knows me very well would probably describe me as someone who often has a certain amount of anxiety. I believe it frequently takes on the disguise as "drive"; always wanting to be moving or get something done.  This can actually seem like a good thing at times, the desire to accomplish goals and see things through, but in reality the anxiety is a lack of rest and contentment.

When I first got really sick and had to go to Barnes Jewish Hospital, my mom got so aggravated with me, because the doctors asked me if I worried a lot and I told them no. My mom knows me pretty well and she knew this was not the full truth. Of course I worry!

The anxiety has been rapidly growing in me the past week. I am so tired of going to doctors and being sick. My attempt to get into the Mayo is because I am tired of going to doctors, being sick, and I can't afford the treatments that are required for Lyme. But here is where the anxiety and worry has started building up in me…what if I don't get into Mayo, what if I do get into Mayo and they ignore my pain or aren't open to Lyme or try to pigeon hole me into a diagnosis because they aren't sure. What if I need to go to this place in Arizona instead of Mayo, because they have been studying and treating Lyme for a decade. What if, what if, what if??????? Let me just tell you I have not been at peace.

So, I was praying last night as I woke up throughout the night the scriptures about anxiety and God's consolation. This morning as I am spending time with God, the two scriptures from my devotional are about trust and quietness. When we trust in God, our creator - the one who knows all things and is in control of all things, the path we should walk becomes straighter and not so curvy. Its the curves in the road that throw me off: like learning to ride a bike and once the corner comes up not knowing how to steer and thus falling to the ground. But trusting in God, letting him steer, my path becomes straighter and less scary. In addition when I allow my mind to be quiet and not filled with the "what ifs" my trust in God can grow and I can be strengthened.

Believe me, even as I write, I am having trouble allowing my mind and heart to be quiet and trust in God. There is a part of me that clings to the worry. Its in my human nature to want to control, get things done and worry about the outcome. Relinquishing these things is what God desires for me and for everyone. To rest in quietness and trust him fully, because he is knows what is best and is in control. A few days ago I asked you to pray about me getting into Mayo, but what I really need prayer for more than anything is that I will be quiet and trust in God.

With Mayo Please

It is 3:40 AM and I can not sleep. Totally unusual for me; this never happens; when my head hits the pillow I am out. I have been in pain all yesterday, couldn't drive, shaking, grunting tick that I have etc. It was a very hard day. Luckily I have an amazing mother who took me to the appointment I thought I had (I had wrong day, it's not until today) and took care of my kids and myself for the entire day. Super blessed!

I am still uncomfortable, regardless of the fact that I have taken all the medicine I can take and have been laying down for hours now. Usually this medicine knocks me out but for some reason, not tonight. So, I decided to blog. I find it therapeutic and hopefully it helps others too.

The latest news in my life is that I am trying to get into the neurological department at the Mayo Clinic. It is difficult to get into the Mayo. I was denied over a year ago when I tried, but I have regressed drastically since then and just about exhausted my resources here. When I called to ask for an appointment and gave them my history I literally said, "Please do not deny me an appointment. I have 3 kids and it is very difficult to function." It takes about 2 weeks for them to review my case and make a decision on if they will see me.

If you are reading this, please pray. I know God is able to get me in if that is the next step I need to take. I am trying to do my part by calling my doctors and having them contact the Mayo to recommend me. Not sure how much that helps at this point, but like I said, "God is in control."

I decided it was time to go this route by some prodding of friends and doctors. Also, while I believe that ONDAMED and Chinese Herbs with Acupuncture have been beneficial, I am still struggling majorly (I do recommend both of these treatments as alternatives or in conjunction with antibiotics). Plus, as you  probably know alternative treatments are not covered by insurance. This makes a tremendous financial burden. I have decided that I can not continue to go further in debt and need to seek out the Mayo. If I am unable to get in; well I don't know what the next step will be but I trust God will show me.

Yes, I have written "trust in God and God is in control" several times in this post. I have really been struggling because I have done everything the doctors have told me to do. EVERYTHING, including seeing a psychiatrist!! That was a nightmare experience I don't care to write about now, but I am not giving up on that avenue either and will try to see another one. I am growing very very weary and the best thing I know to do is to feed my soul with God's promises. He is my rock. My peace. My joy. My deliverer. This is the scripture I have been going over and over this week…
      "But blessed is the one who trusts in the Lord, whose confidence is in him. They will be like a tree       planted by the water… It does not fear when heat comes; its leaves are always green. It has no worries in a year of drought and never fails to bear fruit." -Jeremiah 17:7-8
What a comfort to have God's words to strengthen us. Thanks be to God.

Thankful for Help

I haven't written much lately and especially on what is happening in my own body. No particular reason beside being busy and and not really loving to blog. I find it much like journaling, which I don't enjoy, only a bit cooler.

That being said, this will be a short post.
Thank you to everyone who is always so willing to help us. Life has not been easy but having others to help offset the load is a gift that I can't tell you how thankful I am for. Prayers, help with my kids, help with my house, help by being a listening ear, help with meals, help with making a room/bath so I can have someone live here at times to assist us, on and on and on. God has blessed our family in so many ways and I am thankful.

"A Friend Loves at All Times" - Proverbs 17:17

More on Lyme and Psychological Issues

I continue to be faced with people who do not understand Lyme and simply don't care to. If a diagnosis is not given by a "traditional" practitioner then it is completely dismissed and not looked further into.

Recently a friend sent me an interesting interview from TruthOut with Sini Anderson. Anderson was diagnosed with Lyme while filming the documentary The Punk Singer, on artist Kathleen Hanna who also happens to have Lyme. There was a quote by Anderson from the interview that resonated with me,

" ...if you're a woman and you admit anxiety or depression, you just, you know, it's really easy for doctors to just put you off in another category as somebody who could use a little bit of therapy. And you know what? Quite honestly couldn't we all use a little bit of therapy?
But, we're not . . . we have to think about what doctors we're talking to, what symptoms we're presenting to them, because we can't be brushed off into a corner just saying, "Okay, this is somebody who is just sad." It's like, "no, I'm not sad. I'm telling you that I'm having problems with my speech. I'm having a great amount of pain. I can't think clearly anymore," and that "yes, there's depression that comes along with that and there's specific Lyme anxiety, that isn't your run-of-the-mill general anxiety." It's complex."
-Sini Anderson from interview with TruthOut

Anderson is a feminist as well as a director. Although I would not categorize myself as a feminist, her experience of being put off by doctors as someone who just needs therapy is something that I believe may indeed be a more prevalent response to women with Lyme . It is maddening. The interview is really interesting and worth reading. If anything, what Anderson has to say about responses from the "traditional" medical profession is spot on. The controversy on diagnosing Lyme needs to be looked further into, and in the meantime patients need not be written off as having solely a psychological problem.

So, What's the Diagnosis?

For people with Lyme multiple diagnosis is the norm. Lyme is extremely hard to diagnosis and "Chronic Lyme" is still rarely recognized as an actual disease amongst many people in the medical profession. A lot of this has to do with testing that is less than perfect, and testing from labs that are not validated by Center for Disease Control (CDC).

"At least seven labs in the U.S. have been denied permission to offer Lyme tests over the past decade in New York, according to state records obtained by the New England Center for Investigative Reporting. The state is the only one that performs a rigorous review of tests to ensure they identify what they claim to before they can be offered there." - Beth Daley and The New England Center for Investigative Reporting (this is a really interesting article, worth reading)

This is not comforting information for those of us diagnosed with "Chronic Lyme", especially if we have used a lab that is not "approved." I hesitate to share my personal tests results because of the response I have received in the past from both the medical and non-medical community. The response has been mixed, and thus very difficult to deal with. However, with the hope that sharing my experience will help others,  I am going to give you an overview.

When I first got sick I had a tick bite (I have had tons through the years in addition to this one). The bite was on my head. I have no idea if I had a bulls-eye-rash and I did not save the tick. I began to experience the typical symptoms that are common with Lyme, but did not make the connection for at least 7 months; neither did the doctors. In fact when I first started wondering if it could be Lyme, I asked several doctors and was told if I didn't have a rash, then no and also, that we did not have Lyme in MO. OK, (unfortunately this was at a very,very reputable hospital) so what did I have?

The first diagnosis was Fibromyalgia and then later Functional Neuro Symptoms. When diagnosed with Functional Neuro Symptoms I was told I needed to see a psychologist and a psychiatrist, that I needed to be on a lot of medicine, and I would have to deal with it the rest of my life. This was not a comforting thing to hear, but neither is a Lyme diagnosis. Truth is, according to the exhaustive list of symptoms for this diagnosis I do have Functional Neuro Symptoms and so does every other Lyme patient. Unfortunately, I have taken and do take the medicines recommended for this diagnosis and have/do see a psychologist and yet still continue to have the same symptoms. Some say I  haven't been medicated correctly, and others say don't get on any more medication. What a quandary I am left in!!!

To digress a bit…when you are sick and trying to find an answer to why you are so sick multiple diagnosis and people's opinions can be very emotionally draining (this does not help symptoms regardless of diagnosis). This is probably one reason people withdraw, get discouraged, get misdiagnosed etc. etc.

So, you are probably wondering what I decided to do. The answer is BOTH. I will continue to be treated for Functional Neuro Symptoms and I suggest that anyone diagnosed with "Chronic Lyme" do the same. Seeing a psychologist can be extremely helpful and necessary. Getting on a neurological medicine such as Gabapentin can help with neuropathy and other neuro symptoms, and antidepressants are an obvious aide when dealing with a debilitating disease. But, I am continuing to try treatments for the Lyme as well based on the recommendation of doctors that are constantly being educated on Lyme.

As far as sharing my personal test results, I will in another post!

Lyme Research Alliance 2014 - The Faces of Lyme

Proper Way to Remove a Tick

I am about to share with you a true and shameful story. Let's just say it is a "what never to do" story.

Not long ago I was getting ready and noticed my armpit itched. Not only did it itch, but it also felt like there was a slight bump. So I raised my arm high to the sky to take a look and noticed the area was brown. I immediately thought, "oh a new freckle or mole has formed," so I went to the mirror to get a close up. It wasn't a mole or a freckle at all; it was a nymph, otherwise known as a small tick. The kind you SHOULD be afraid of!! How could this be? I had just taken a shower! Ticks come off in the shower right?? NO, NO, NO!  Then I proceeded to use my finger nails to pull the tick off and I flushed it down the toilet.

You maybe thinking this story sounds familiar to one of your own, and wondering what is so embarrassing about it because that is what anyone would do. As a person who had been diagnosed with a tick borne disease and suffered substantially, I should and do know better.

1st Bathing after being outdoors will not remove ticks. You might have a better chance of finding them,       but they don't come off just because you bathed.
2nd Ticks should NEVER EVER be removed with your finger nails.
3rd Save your ticks by putting them in a zipper bag and freezing them. DO NOT flush them down the toilet.

Most likely this spring/summer you are going to come face to face with an attached tick either on you, someone you know, or your pet. Proper removal is imperative so please read and re-read the following information.

Identifying Ticks - 
photo from Center for Disease Control and Prevention

This diagram is just to give you an idea of what you are looking for and the variation in size. If you would like to view a more detailed list of ticks and information on the kinds go to TickEncounter Resource Center (I am constantly using this site because it has so much information).

Tool for Removing Ticks - Please do NOT use your finger nails! Pointed tweezers is what you need (not household tweezers because they increase the chance of tearing the body). I highly suggest you purchase a pair for at home and a pair to go on your key ring or easily take hiking. You can pick them up at most pharmacies or beauty departments of local stores such as Target and Walmart. To save you the hassle here is a link to buy a pair of Sally Hanson Tweezers. Finding the key chain pointy tweezers may be more difficult so here is a link for Uncle Bill's Silver Gripper Key Chain Tweezers.

Removing the Tick- When you go to remove a tick clean the area with rubbing alcohol, take your pointy tweezers and grab the tick as close to the tick's head or your skin as possible. Use a slow and steady motion to pull straight up and out. DO NOT TWIST!!!  Wipe area with rubbing alcohol again. Place the tick in a plastic zipper bag and freeze. You will want to keep the tick in case you begin to experience symptoms. If you think the tick has been on your body for at least 36 hours watch closely for symptoms and be prepared to visit your doctor. Watch this video to see how proper tick removal is done.

**Do't forget that Tick Prevention is essential!

***Pets need to be checked thoroughly for ticks and protected as well. Please check with your local vet about protecting your pet and look into purchasing a pet tick remover.

Tick Prevention: How Not to Become a Tick's Feast

We are currently at the height of tick season, late spring through summer. I have been wanting to write about tick prevention for the past several weeks because so many of my friends keep reporting findings of ticks on their bodies.

YIKES!!

Those arachnids are lurking in the brush and tall grasses waiting to ambush you, their host. You can often find them within 3 feet of the ground and beware because they do not jump, fall or fly. Instead they wait for you to brush by the vegetation they are on, and then they gently crawl around on your body till they find a nice spot to latch on to such as your head, neck, underarms or groin and enjoy your blood.

Sounds HORRIFIC!!!!

It doesn't have to be. Use the tips from Tick Prevention 101 you can go into the battle zone prepared to keep your blood safe from becoming the predator's next feast.

Tick Prevention 101

1.  What to Wear -  Wear light colored clothing so that you can better see dark colored ticks. Tuck your pants into your socks making it more difficult for the tick to reach your skin.

2.  Sprays -  Permethrin & DEET
Permethrin is found to be most effective in protecting/killing ticks.  It is derived from a chemical found in the chrysanthemum family of plants. It should NOT be applied to the skin. Permethrin is more difficult to find than DEET so here is a link to purchase it on Amazon.

If you are going camping in the woods then you should really consider soaking the clothing items you will be wearing in Permethrin. You can find some helpful videos on treating your clothing at TickEncounter Resource Center.

DEET is the spray that we most commonly hear about and use. Although it does not kill ticks on contact, it is relatively safe for spraying on the skin - (let's face it you won't want to wear pants tucked into your socks in 100 degree weather, plus it is such a fashion phopa).
The LymeNet Europe offers a list of pros and cons of using Permethrin and DEET

Pros and Cons:

• DEET needs to be applied regularly and can only work as it is evaporating. Permethrin works for weeks after it has dried inside clothing fibers.
• DEET is applied directly to the skin and can be absorbed through the skin. Permethrin is applied to clothing only and has limited contact to the skin.
• DEET has a detectable odor. Permethrin smells only until it dries.
• DEET does not kill or disable ticks and is a poor repellent. Permethrin works instantly and is extremely effective. It is the tick repellent of choice by the military.
• DEET can melt synthetic clothes like nylon. Permethrin causes no damage to any known cloth or synthetic fiber.
• DEET products are easy to find. Permethrin is hard to find and more expensive.
• DEET is an effective fish repellent.  (Permethrin is actually known to be very toxic to fish!)

3. Essential Oils - When you use Essential Oils as a repellent you will want to combine 2TBL of a carrier oil such as Jojoba Oil, Coconut Oil, or Sweet Almond Oil  with about 20 drops of your essential oil. Currently, I am using TerraShield by doTerra. However, after doing more research I am also interested in Rose Geranium by Eden's Garden.  An interesting blog was written on "Primally Inspired" about using Rose Geranium as a tick repellent; it's worth reading.

I imagine there are more ways to prevent falling prey to the 8 legged enemy, but these are the one's I believe are most practical. Plus, I have to hurry. Many of you have already been attacked and need to know about proper removal. Stay tuned for "Proper Tic Removal."

Alternative Treatment Plan

Over the past year I have been treated for Lyme Borreliosis primarily with antibiotics. There is so much information and controversy over treating Lyme with antibiotics; I will need to write a separate post for this. What I found is that IV antibiotics helped in getting the Lyme "under control" for me. They made life livable, but they do not kill the Lyme.

For about 4 months after finishing my antibiotics I felt pretty good and had very limited symptoms. When I did have symptoms, I could rebound fairly quickly. At the beginning of the year I started to exercise, something I had not been able to do for months! I began to do hot yoga with infrared heat see previous post for more information. Then I started regressing. My neurological symptoms began to increase and it started taking me several days to regain strength and never quite fully gained.

I knew that I did not want to go back on antibiotics if at all possible. My gut was torn up and I didn't think my stomach could handle much more. Finally, I spoke with a doctor who has a holistic Lyme treatment approach.

I am so blessed to have an aunt, Laura Belg-Adams, who is a Certified Microscopist and has started me on essential oils. She has given so many of my oils and supplements just because she is awesome. Essential Oils and their healing properties have been used for centuries and are written about in the bible.

Last week I visited a Chinese Herb Specialist whom my doctor told me I needed to see. She has started me on a protocol she follows using various Chinese Herbs. An important note here is various. Lyme is sneaky and hides. This is why it is important to treat with one herb and then change it up and treat with another. The Specialist also recommended that I start an essential oil Lyme Therapy by doTerra. It calls for 3 drops each in an empty gel capsule: Oregano, Clove, Thyme, Cassia, and Melissa. These should be taken twice a day for a minimum of 10-14 days and recommended to continue for 2 months after symptoms have subsided.
**Please note it is very important to use Certified Pure Therapeutic Grade (CPTG) oils when taking orally!!!


Essential Oils and Chinese Herbs aren't the only things that are apart of the alternative treatments I am doing. My doctor also wanted me to start treatments on with a machine called ONDAMED. This is a machine that helps diagnosis what is going on in your body by reading its electromagnetic waves. Here is a video about how it works (it will explain much better than me)!

I am also taking vitamins that I was low in, fish oil, and probiotics. Please know that I had all of these things approved by a doctor who did lots of testing on me and made sure nothing would interact with my current medications. I feel strongly this is VERY important (even the oils) if you are on any other medications. Count on me to let you know how I progress as my treatments continue.

Lyme and Exercise

I love hot yoga. I stretch my body and focus my mind all in presence of infrared heat. Oh, so nice. Until later. Detox time. My body is so toxic that when I induce sweating and raising my body's internal temperature, I end up "herxing." Herxing, short for Jarisch-Herxheimer, is not a bad thing, but it is difficult to endure. It often occurs with large doses of antibiotics, but I have found that it occurs with alternative treatments as well. Basically what happens is the dead bacteria release their toxins into the blood and tissues. This provokes an inflammatory response that is exaggerated.

Recently I have had such intense regression that Hot Yoga has not been something my body can handle. However, just laying in the infrared heat can be beneficial.

"Sweating in the infrared sauna flushes fat-soluble toxins (including heavy metals) out of the body via the skin. This detoxification which occurs at the lower heat available in infrared saunas assists the immune system and the healing process while increasing circulation, invigorating the body and allowing the meds to reach all parts of the body in a more efficient manner. Infrared sauna therapy also relaxes the muscles and joints, giving the patient some relief from their pain."
 -Quote from Sunlighten

In addition to infrared heat, exercise is very important for Lyme sufferers. This may sound impossible to you as it often does to me. When you can barely move or get yourself out of bed due to pain and discomfort, exercise is the last thing on your mind. However, according to Dr. Raj Patel

"Exercise offers many benefits in the treatment of Chronic Lyme disease.  The treatment of Lyme and its co-infections (regardless of the modality used i.e. antibiotics, herbs, rife, etc.) results in a significant load of toxic byproducts in the tissues and lymphatic system.  These byproducts include remnants of dead bacteria as well as the heavy metals and chemicals being released as the Lyme load is reduced.  The body mounts an inflammatory immune response to these bacterial remnants which is responsible for the well known "Herxheimier's reaction."  Exercise, through increased circulation and lymphatic drainage, enables the body to more quickly and efficiently rid itself of these substances, and thereby reduce the length and intensity of the herx reactions.

Another potential benefit of exercise, when done correctly, is that it can raise your core body temperature, and thereby aid in eradicating these infections.  We know from research that borrelia, the Lyme bacteria, thrives in certain areas of the body like the sinuses, collagen tissue underneath the skin, and joints and ligaments due to their scarce blood flow and lower temperature.  Proper exercise enables one to raise his core body temperature for a sustained period of time."

I have found Dr. Patel's evaluation of Lyme and Exercise to be an accurate assessment for me. When I am having a "good day" I have been walking on a treadmill at a very slow pace and then sitting in a sauna. Shortly following my workout I will take a nap for a couple of hours. Even with this simple exercise plan my body will herx and I may not be able to exercise again for several days.

I encourage you to find an infrared sauna or hot yoga place and utilize the benefits of infrared heat. If you are unable to do yoga, just remain in child's pose and let your body detox as the heat penetrates your body. Drink loads of filtered water and take a warm shower afterwards. REST IS ESSENTIAL. Do not choose a time to exercise or sauna when you have errands or work directly after. You must allow your body to rest in order to lessen your herx.

To learn more read Dr. Wilson's information on Parasympathetic Healing

The Fierce Warriors

As I was itching my first tic bite of the year I thought about writing a post entitled "I Hate Tics." Considering I live with Lyme Borreliosis, I could give a thousand reasons for hating tics. Then it occurred to me that there is something I  respect about tics; they are Fierce Warriors.
They are...
Terrific Hiders - They like to hide in dark, warm places of your body such as your armpit, head, or crotch. If you start itching you better make sure you haven't been attacked.
They have...
Ruthless Weapons - Once they bite you they can fill your blood stream with all sorts of bacteria. If you are infected you will feel fatigue and other flu like symptoms.
They don't die easy...
Wounded but not Dead - You may think you have removed the tic but, indeed if you did not use the proper tool their head may still be stuck inside your body. In which case they can still infect your blood.
Just when you think the battle is over...
Leaving Their Mark - If you have been infected by a tic carrying Lyme and you don't catch the symptoms in time you may end up with symptoms that are difficult to diagnosis, treat, and in some cases re-appear. 

In the Wilderness While the Storm Rages

 I just need to get this out there...Regression SUCKS!! I hate it, hate it, hate it. Right now I am trying to write this post and it is hard to even keep my head up straight. I have been sick off and on for the past month; I don't know why. This week has been very bad. Shaking, major pain in the bone behind my ears. Hard to walk. Lots of the old symptoms are back. I have felt like screaming and yesterday actually put the pillow over my head and let out a few yells.

I keep asking myself, "How can I thank God for this disease(s)?" Yes, diseases plural because this week I found out I have Celiac. Well, I actually was thankful to find this out because it was one more piece to the puzzle. So, I have been telling God that I am having a difficult time saying thank you for where I am at right now. Then, I am reminded that I am in the wilderness with a raging storm. When I am in the "wilderness" the main thing I am thankful for is to know that I am being made stronger in character. That God is moving and molding my life and that it will effect others.

There was a really amazing sermon preached a while back by Keith Simon entitled Living in the Wilderness . I can't tell you how much this sermon has helped me. Honestly, I am not going to try to explain it because you really need to hear it. Really! It doesn't matter if you are sick or healthy this sermon will impact your life at some point, in some way, and you will be able to go back to God's word and remember that he knows right where you are at and is in control.

One more thing that I want to share that has been a real comfort to me for quite a few years now, during other storms in my life is a song by Casting Crowns entitled "Praise You in this Storm." No matter what our circumstance we can praise God, because no matter how awful we feel or how desperate our situation, or how much we just want to disappear, WE ARE NOT ALONE.

Symptoms

Symptoms of Lyme vary somewhat depending on the individual and how the Lyme is affecting their body. In an earlier post I shared a little about the beginning symptoms I had; in this post I want to go into greater detail so that you will have a better idea of what can happen the longer you go undiagnosed.

FATIGUE - MAJOR FATIGUE
I have always loved sleeping and I am a mama of three so an amount of fatigue and sleep deprivation is expected, but not like what I felt. I had hardly any energy and felt like sleeping a lot.

MUSCLE PAIN
The muscle pain I experienced was a deep pain mainly in my arms and legs. The pain was pretty much constant and got worse the longer I went untreated.

TREMORS
The tremors I experienced were primarily in my right leg. My leg has had small tremors throughout the years whenever my back would be in pain, but they usually were brief and could be settled with some stretching or rest. The tremors that accompanied the Lyme would last a long time. As time went on the tremors moved into my entire body.

FACIAL PALSY
This is a picture of what the facial palsy looked like for me. I could not keep my face from what felt like a strong force of gravity pulling it down on one side.

NEUROPATHY
Mainly experienced in my arms and back. Wearing clothes was uncomfortable and even the lightest touches would cause a "knee-jerk reaction" to pull away. This also included tingling in my hands at times.

DIZZY & EYES ROLLING BACK
Felt like my head was spinning around causing it very hard to hold my head up. This was often accompanied by my eyes rolling back in my head. First my eyes would blink uncontrollably and then roll back.

UNABLE TO WALK
It's very difficult to walk when you feel off balance. My body would shift to one side making it nearly impossible to stand straight up. A cane became my best friend!

STUTTERING/LOSS OF SPEECH
My speech at times, not always, would become slurred, slow and I would begin to stutter. It was very difficult to get words out. I could almost see them in my mind and yet I could not speak them.

BRAIN FOG
Very difficult to think clearly. Had a hard time formulating or expressing my thoughts.

BURNING FEET
When I was at my worse my feet felt like they were on fire.

A Gentle Whisper

Oh My Goodness, I love acting. I remember as a child wanting to be in every school play! I could barely stand the anticipation of being old enough to compete on the high school drama team. It was thrilling, even a rush, to take on a personality and present a story in a way that would bring emotion to the audience.

When I got to college I decided I wanted to work with drama and the arts in worship. The church I attend has an amazing children's program. They come up with tons of creative ways to teach kids about Christ! I bring all of this up because it relates to being limited on what I can and can't do, and how God uses limitations to teach me. This Easter the children's programming is doing a play called "Scooby Doo and the Mystery of Easter." Well, let it be known that I  am a big fan of Scooby Doo, especially Daphne. So, when I was asked if I could be a part of the play, (an opportunity to act and worship by ministering to children) of course I said NO.

I felt crushed. It's been a hard week and I have been uninvolved at church in what feels like forever. I looked at my calendar to see if I could make the practices, and then I thought about how unpredictable my health is. Tears started to roll. My husband asked me if I could see anything that God may be doing in this situation. I did not want to explore this, but felt pressed to none the less.

As, I was thinking and kind of trying to pray (didn't really want to) the story of Elijah and God's gentle whisper came to my mind. You can read about it in 1Kings 19:1-18. Quick summary…God had just done an amazing miracle on Mt. Carmel and showed the prophets of Baal who was the one true God. But Elijah quickly got scared when he heard the queen was going to come after him and kill him. So he ran and hid. God came to Elijah and asked why he was hiding then he told him to stand on the mountain and watch for him. The wind came and tore the mountain apart, then an earthquake, and after that fire; God was not in any of them. But, after the fire, came a gentle whisper and Elijah felt the presence of God.

This reminded me of something that happened almost exactly a year ago. God gave me a gentle whisper and it has been a constant comfort to me. I had gone to a retreat for adoptive moms and was having time in prayer. I kept envisioning God's arms around me and when I opened my bible I turned to Isaiah and the scripture before me was 40:11, "He tends his flock like a shepherd: He gathers the lambs in his arms and carries them close to his heart; he gently leads those that have young." Almost immediately after this a woman came up to me, asked if I had a tattoo on my back (Yep, I do). She felt God telling her to let the woman with the hidden tattoo know that, "God sees her."

Today, as I started to feel sorry for myself I was reminded that God is in the gentle whisper. He has promised to carry me in his arms and that he sees me. No matter what place you are in, God sees you too. You will find him in the gentle whisper.

Looking Back - The Beginning

When I was young and a runner I learned quickly that if I wanted to do well in the race it was best to never look behind me, because it always slowed me down. If I wanted to win I needed to keep my eye on the goal, the finish line. I have found that looking forward and be focused on a goal has been a useful lesson in many areas of my life, but I have also learned that it is not always applicable.  As, someone who is grateful to just be walking, looking back is one of the most helpful things I can do. Remembering where my health was a year ago and the strides in recovery I have made, brings me hope. So, as I lay here in bed having had several very challenging days in a row, looking back is exactly where I am going to begin this blog. My hope is that it will be informative and encouraging to you in your walk with lyme.

It was the summer of 2012, I clearly remember saying to my husband one day, "I am so tired and just don't have any energy, so I think I need to stop eating sugar." He laughed and replied that instead of cutting out sugar I might want to try working out. Ugghhh, I did NOT like working out, but I thought I would give it a try. I joined Jazzercise and for a couple of months I felt better. This new energy was short lived as the fatigue got worse and worse, to the point that Jazzersizing no matter how fun it had proved to be, was no longer an option.

At the time I had 3 small children ages 5 and under, with the youngest having only been home from Ethiopia for about 6 months. I am telling you this because many have said, the fatigue was most likely due to stress of an adoption and the life of being a mother. Honestly, I wondered about the stress and will go into this more later, but the fatigue was completely different than being worn out from chasing kiddos.

I walked around feeling like I had the flu. My muscles began to ache with severe deep penetrating pain. By Fall I wasn't only experiencing pain and fatigue but neuro-symptoms began to surface. My leg would tremor/shake uncontrollably for long periods of time. The skin on my arms and back would get so sensitive that clothes were uncomfortable. The last straw for me was when my little girl would try to give me sweet kisses on my arm and it was so painful that my arm would have a "knee-jerk reaction" and pull away. Not being able to enjoy kisses was not an option for me! I needed help.