Lymes

I’m Coming Back…

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The Lord has blessed us this summer with spending time with extended family, to our son’s trip to Scotland and competing in the Worlds and the safety and healing of Sydney’s ankle.  Now fall is here and I find that I have completely lost track of time and not written here for quite awhile.  When I think about it I consider my words and realize I don’t have much to say so I think about writing the next day only to forget.  Hence the problem with a blog that should be kept up weekly.  🙂

Anyway, moving forward I’m planning on spending more time here, especially with a new treatment plan coming for the Lyme and co-infections that are once again active and causing issues.  This disease is nothing short of interesting.  Plus, school is in session for our last child in HS .    Not to mention her healing and surgeries yet to come along with her rehab.  I’m sure the weather will keep us indoors shortly enough.  🙂

Anyway, if you find the time and could pray with me on my own health that would be wonderful.  I’m seeing a new doctor and looking into doing some traditional treatments for my Lyme.  Not sure if that means IV antibiotics or oral, I’ll find out in early Oct.  This means that even though I’m bad right now, it will only get worse as the little buggers die off and we work on getting my adrenals back in working order.  In the mean time I’m reading as much as I can on the meds used and making sure I understand each one.

I’m also seeing a cardiologist next week as I’ve been having some chest discomfort and some periodic pains that have been hanging around since July.  I know…I should have gone sooner.  Let’s just say it’s been a long summer and I have put myself on the back burner until now.  Since I had some heart surgery 23 years ago it’s enough of a concern that they are working me in next week and I’m limited as to what I can do right now.  No exercise and no walking long distance.  Of course that order went out the window last weekend when I had to walk from the RV to the stadium for the college football game while also pushing my daughter in the wheelchair.  Guess I’m still breathing and still moving around so all is well.  🙂  Praise God for the ability to keep on going and to keep focused on the things that really matter…like my family!

Anyway, I’ll try to keep up with the blogging if you would pray for my own personal healing as well.  Maybe we will find some great things come out of both.   🙂

 

 

Following in Faith

Clinging to the only Peace that can Sustain

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During times of disbelief over things of this world, I cling to the word more than any other time.  My prayer life seems to consume more minutes of my days than anything else.  I lay awake at night in prayerful thought, consideration and more desperation for the Lord Jesus Christ to hear my prayer.  At times I feel as though I am pleading for His will to line up with my hopes.  In the end, I trust He knows what’s best and He will take care to bring me closer to Him in my thoughts, and also in my prayers.

Psalm 119: 49-56

Remember you word to your servant, in which you have made me hope.  This is my comfort in my affliction, that your promise give me life.  The insolent utterly deride me, but I do not turn away from your law.  When I think of you rules from of old, I take comfort, O Lord.  Hot indignation seizes me because of the wicked, who forsake your law.  Your statutes have been my songs in the house of my sojourning.  I remember your name in the night, O Lord, and keep your law.  This blessing has fallen to me that I have kept your precepts.

As a great deal has plagued my thoughts and rocked my world this past two weeks, I find peace in Him and in the promises yet to come.  I find grace in the promises already given and I find hope in a creator who is perfect in every possible way.

Where do you find peace?  Do you look for worldly wonders and human nature to give you peace?  Or do you seek Jesus and the Word to sustain and keep you?  Again I ask, Where do You find peace?

 

Following in Faith, Why?

Sufficiency of God

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God’s care for his people is sufficient!  There can be no doubt.  Joy comes from knowing who He is, what He has done for us, what he has provided for us, and what we have to look forward to in serving Him.    I sat in amazement the other night in church as the teaching was on Approaching God from Psalm 131.  It was a very nice follow up to what I had previously that morning posted on my blog.  It wrapped up my thoughts and was like a gift handed back.  I just had to share it here with you.  Hope you will take the time to listen.

Following in Faith, Why?

What Really Matters?

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coffee pic

For we are the aroma of Christ to God among those who are being saved and among those who are perishing, to one a fragrance from death to death, to the other a fragrance from life to life.  Who is sufficient for these things?  For we are not, like so many, peddlers of God’s word, but as men of sincerity, as commissioned by God, in the sight of God we speak in Christ.        2 Corinthians 2:15-17

Watching the news can be traumatizing these days.  It seems the world is falling apart and no one has control over anything.  There is conflict everywhere.  War overseas, tensions amongst Americans, divorce between parents, millennials not knowing when adulthood begins, sexual confusion tearing at the seams of the fabric of creation, growing numbers of cases of disease and outright moral conflict between right and wrong.  Where in the world do we find peace and hope?  Is there any?

If you haven’t noticed, I have been out of the loop lately.  My blogging has been a bit sparse.  I blame it on quite a number of things, from loss, to health, to not knowing what to say in times of constant turmoil.  I mean, what I want to say and what I should say are not in conjunction with one another and finding the right words were not coming as easily as they normally do.  That is however, until today.  Well, that’s only partially true…I started stirring with “blogger” thoughts last week, today is the first day I’ve had time to sit down and put them on the board.

A friend and I began doing a book study together.  Something that we both were excited to start for a few months.  We finally began and I have to say, I am thrilled.  Anything that can bring me closer to the Lord in study is a joy.  It gets me out of the “what is happening in this world” mentality, and takes me to the “thank you Lord for saving me out of this world” mentality.  Those little reminders to thank the Lord for life, grace, and eternal salvation bring a smile to my face, hope in my thoughts, stamina to continue on and keep me grounded in purpose.

And because lawlessness will be increased, the love of many will grow cold.  But the one who endures to the end will be saved. Matthew 24:12-13

I often wonder what people think of when they consider their lives.  I mean, do they look at their lives and thank the Lord for what they have and for their future?  Or do they look at their lives and say, “I’m just not rich enough, happy enough, or wise enough so I need to make changes… so look out world here I come.  I don’t care who is in my way or who I destroy in the  mean time.  After all, my life is my life and I need to be happy and have it all.”  Crazy as that may sound, in my eyes, that is what I see in people when I look around.  I see it in relationships, in groups, in family, on TV and in movies.  I have wept, prayed, prayed some more and at times come close to shutting down, wanting to turn off all social media, electronics and lock the door from the world.   Right or wrong, it saddens me that the world is so brutal to human emotion.  That being said, as I write this it’s noticed that what was just said has one considering “I” and “me”.  This life isn’t about “me”, it’s about something greater than that.

The sadness I have felt over these issues however, has been overshadowed with joy in the last few weeks.  Why?  Well, its due to the simple fact that I am reminded,

For by grace you have been saved through faith.   And this is not your own doing; it is the gift of God, not a result of works, so that no one may boast.  For we are his workmanship, created in Christ Jesus for good works, which God prepared beforehand, that we should walk in them.   Ephesians 2:8-10

In our study  we are reading about our purpose in this life.  Why were we created to be saved?  The answers are always present and sometimes it takes the nudge of the Lord during these times of distress to remind us of His plan for us and how we should be living.  Remembering this, takes the “me” out of living.

Am I speaking about you?  Do you have the hope needed to continue on in this life?  Consider it.  Consider where you are.  Consider how you are living.  Consider what could be holy vs. worldly.

Therefore do not be ashamed of the testimony about our Lord, nor of me his prisoner, but share in suffering for the gospel by the power of God, who saved us not because of our works but because of his own purpose and grace, which he gave us in Christ Jesus before the ages began, and which now has been manifested through the appearing our Savior Christ Jesus, who abolished death and brought  life and immortality to light through the gospel…  2 Timothy 8-11

Does suffering for the gospel mean that we are unhappy?  No.  We don’t have the need for the fancy car, the perfect spouse, the perfect house, perfect job, perfect health, etc. etc.  Looking at the fact that God called his people out of a life of sin brings joy to believers, and a peace that nothing can compare to.  Just as I said above, we may get sad over the thought of the destruction of this world that was created so beautifully by God, yet we have joy knowing that there is so much more.

Prayerfully, my thoughts will continue to swell with blog worthy writing and a sweeping message of hope will be captured for others to embrace.   Have a blessed week/weekend and enjoy the sun this summer day.

Lymes

There Is Hope and Help…

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For many of us with Lyme disease, it’s so difficult for others to understand.  One minute we are doing everything that seems “normal” and the next we are in crash mode.  Our bodies just don’t operate with any consistency.  As I watched Under Our Skin again last week, I was reminded of how so many of us outwardly look “normal” to others, yet inside we are writhing in pain, exhaustion, and discomfort.  What is seen on the outside is quite different than what is going on inside.  While the outside looks content and at peace, on the inside there is a battle.  A battle of immunity vs. borreliosis.  A battle that isn’t won by either, as long as there is treatment, yet a battle that drags on without end in sight, so it would seem.  One side trying to overtake the other.

I remember watching the attached when I was early diagnosed and I wept.  I wept thinking there was not an end in sight for me either and that I would be just as bad as Krista.  Fortunately, at the end of the story, I found hope and was encouraged to look toward healing with a positive attitude.  It reminded me that what I was experiencing was nothing in comparison.  I looked at her age and thanked God that I had achieved 20+ years longer than she before crashing.  Her story is quite extreme, with some additional co-infections that riddled her body for several years prior to them finding out the cause.  It’s difficult to watch, yet it’s so real.  Her story is similar to Julie’s, in my last post, in that their co-infections and symptoms mimic one another.  If, you have the heart to watch, please do so with tissue and with the reminder that there is healing.

Lyme is nothing to mess around with, yet it is not something to be terrified of.  With the rates rising of Lyme disease, everyone should be aware of what kind of symptoms can be observed from just a tiny little tick.  The bacteria that can make a body deteriorate quickly may be small, yet they are definitely a large scale concern.  I encourage everyone to please understand Lyme, it’s affects on the body, learn how to recognize the symptoms early.  Before thousands of dollars are spent on trying to come up with a diagnosis.

Please remember also, when someone is diagnosed with Lyme, we don’t want to be defined by it, yet we want people to understand that every day is a balancing act.  Every day is a new day.  We cling to hope, even though we get frustrated, and we pray knowing that only God will get us through.  With my own experience with Lyme, I have said that I hope I can help someone else someday.  I hope that my own journey will be an example to someone else in a positive sense and that none of what I have experienced will be wasted.   Just as Krista has endured and shared, she also has educated which is what I am trying to do as well with this blog.   Thanks for taking the time to read and to watch.

Lymes

Grace Abounding – Julies Story

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It has been a pleasure to know Julie and her husband Steve.  I met Julie through our blogging and have since then been able to meet her in person on two occasions, and have had the pleasure of reading scripture and praying with her nearly every Thursday night through Skype for the last year and a half.  I adore her upbeat attitude when life seems to try to keep her down and her love for our gracious Lord and Savior Jesus Christ.  I have witnessed first hand some of the episodes that take Julie’s body to an extremely vulnerable place and have also seen her rebound back to a smile a few moments later.  She credits her strength to the only one who gives it in such times, making her all the more someone to look up to.  Hugs and smiles to you Julie…. 🙂   (Wish my picture would download…)

Here is her story and I hope that you will also check out her blog for more on her struggle with Lyme.

About Julie

The Hope Beyond story began after kayaking in the Cedarville Reservoir in Leo, Indiana on October 11, 2011. What a great time I had with my husband, Steve, and the Fort Wayne Kayaking Group including enjoyment of Louise’s fabulous cookies afterwards! The only problem with our paddle that night was a few sanitary mistakes I made that led to a devastating bout of hepatitis, trip to the emergency room and over a month of wretched illness. The Lord healed me enough to enjoy a family trip over Thanksgiving weekend then symptoms returned thereafter and never really abated.

By January of 2012, my doctor was looking for other causes of the ongoing illness. He identified Chronic Lyme Disease largely by exclusion and clinical presentation; I may have had it for years! Treatment for Chronic Lyme Disease began with oral antibiotics and immediately I was exceedingly miserable. By March I was no longer able to work in my profession as an occupational therapist. We invested in Rife technology coupled with low dose antibiotics, compounded medications, and specific pharm-grade supplements. Daily seizure attack episodes began shortly thereafter and escalated to an unbelieveable level. (See more on my You Tube Channel.) A year later in January of 2013 Steve and I learned that mold in our home was contributing to these neurological complications. We fast-tracked the mold remediation of our home in three months so I could continue to live there! It turns out that the blue-green algae in the Cedarville Reservoir and mold exposures are both “biotoxins.” Then as 2014 began the big focus was on resolving a systemic Candida infection with even more restrictive dietary changes. Sish.

2014 ended with the bombshell news that underlying all of this illness was mercury toxicity!!! I investigated chelation then pursued the best mercury speciation testing and detoxification protocol I could find thanks to my chiropractor, family practice physician, and Quicksilver Scientific. Removal of 2 problematic, root-canaled teeth followed. While the journey of recovery continues to be difficult over four years down the road, I recognize the many cool little life lessons along the way that have served to grow my faith in the Lord no matter what happens to me! And now with my mercury burden down, my beloved Steve and I are hopeful that I AM GOING TO GET WELL!!!

The Lord, Jesus Christ has provided for our needs during this time and directed us through Steve’s leadership, love, and care. The tremendous trials have also brought Steve and I closer to each other and to the His throne of grace. When the isolation of this disease got unbearable, He brought me a local Lyme Support Group, Skype Bible Prayer Group, new friends, my own eBook (Hope Beyond Lyme: The First Year), and meaningful connections with others online including this blog! Somehow I became an Advanced Master Gardener along the way. A new hobby kept my hands busy when I couldn’t sleep and led me to open then sell my jewelry shop on http://www.Etsy.com called, Trinity Jewelry by Design. Although I attempted to write a second eBook (Caring for the Sandwich Generation at Home) and develop a unique home safety product for Two Step Solutions LLC, the severity of the complications rendered me bed-ridden this past summer, many days per week. These projects are on hold for now but not forgotten!

UPDATE: January of 2016 began the time to revisit the diagnosis of Chronic Lyme Disease with IV antibiotics, experimental treatment for a fungal infection (protomyxzoa rheumatica or FL1953), and genetic coaching by a naturopathic physician. Gratefully I am tolerating everything a bit better than when this journey began 4 years ago. Overcoming a complex illness takes time and persistence; I am grateful to report that the wretched episodes are finally starting to diminish! KNOW THAT I HAVE NOT GIVEN UP! I hope that you will see evidence of this in my posts here. The Lord continues to provide comfort and hope from my Heavenly Husband and gracious Father: awake with me in the middle of the night as well as in the light of the day, now and evermore. There is even a little bit of dirt under my fingernails from a wee bit o’ gardening too!

At some other life-changing points in my life, the Lord gave me these promises from His Word:

Jeremiah 29:11 (NIV)

11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”

Romans 8 (NIV)

38 For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, 39 neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.

Philippians 1:12 (NIV)

12 But I want you to know, brethren, that the things which happened to me have actually turned out for the furtherance of the gospel.

Gentle Reader: join me on this amazing journey! I know that the suffering during this part of my life will not be wasted. My prayer is that it edifies the Lord and is constructive for others too. Click on the “FOLLOW ME” button along the right hand column or at the bottom of your screen. Thanks so much for taking the time to read this blog and for your support. May the Lord bless you and lead you to Himself . . . a journey always worth taking! :JJ

http://justjuliewrites.com

 

Lymes, Why?

A Families Survival Story – Lyme Disease

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For those who follow me, I did post a few days ago my story on Lyme.   Due to a system error it did not go out through email.  You may click on this post and go directly to the site, click on previous post, in order to read my story and my health history I believe is attributed to Lyme.  

I shared with you my story a few days ago and now I would like to share a story of a dear woman whom I met while on this journey.  I have been following her blog posts and connecting with her through email and feel confident in calling her a friend.  Please read her story and that of her family.  (http://thepersonnexttoyou.wordpress.com)

Treatment Tuesday ~ My Lyme Story
Posted on June 23, 2015
Of all the things I write about here on my blog, I realized that I have never told my Lyme story. I have been asked many many times, and I suppose it would be good to put it out there. Maybe it will help someone else that is on the same path with trying to get answers from doctors about what is going on with their health.

I was born with a hole in my heart, and had an open heart surgery when I was five. As a kid, I seemed to be prone to medical problems, and had many surgeries by the time I was 10. I knew what a ventricular septal defect was before I knew how to play with Barbie dolls. Sounds dramatic, but it is true.

As a teen, I always had issues with my heart racing. I figured out (on my own) how to do Carotid Artery massage to minimize the episodes (slow my heart down), as well as drinking milk or eating a banana as soon as possible. Even if it was only a mental thing, it worked.

For the Lyme part of my journey, I will start here:

*I don’t remember ever being bitten by a tick, but we were avid hikers.

From 1996 to 1998 I had spells of extreme dizziness. Eventually I was diagnosed with “Benign Positional Vertigo.” This eventually resolved itself, and was replaced with extreme gastrointestinal pain all the time. After ultrasounds, medications, and even talking to a therapist (docs thought I had too much stress), it eventually subsided after… YEARS.
Looking back, I think that this was the beginning of my Lyme journey. I think the dizziness was Lyme, and the GI issues were Bartonella.

Fast forward to 2003. I had never felt right after the vertigo. My stress levels were always very high, my stomach would upset easily, and I was afraid of everything. I went through periods of not sleeping well. In early 2003 we went on a ski trip, and ended up with Bursitis. I was put on… you guessed it… Prednisone! Then the shit REALLY hit the fan and was never the same.

Not realizing that any of this had anything to do with Lyme Disease, I found out I was pregnant in May of 2003. For the first seven months of my pregnancy, I felt better than I had ever felt in my life. I was hungry (typically my appetite was and still is small). I was sleeping. I felt happy, hopeful, and aside from one day of nausea, things were great.

During my seventh month, it all fell apart. I started getting searing headaches/migraines. I couldn’t sleep. My heart started racing, and I ended up in the emergency room with tachycardia (320+ beats/minute). I was admitted, given a partial electrophysiology study (where they test the electrical pathways of the heart), and put on bedrest and beta-blockers for the rest of the pregnancy.

In early 2004, Poppy was born. My health issues were not over. Still having anxiety, tachycardia, not sleeping (even for having a new baby), and was afraid to drive in case I had one of these attacks in the car. In April of 2004, I had a second complete electrophysiology study, and found out I needed an ICD. That is a pacemaker with a defibrillator built in, you know – in case my heart decided to rocket out of my chest again, I would get a “shock” and bring it back to regular speed. I also had an ablation due to a block in some of the nerves in the heart.

I honestly don’t know that the heart issues are totally related to Lyme. Maybe the sudden increase in tachycardia was because the Lyme was affecting the problem that was already there, but I have since read many stories of people needing pacemakers and having ablations for the same kind of blockages that I had, and they have Lyme. My heart issues are in the electrical part of the heart, not the plumbing part. So, the jury is still out for me on this being Lyme related. But, worth mentioning because of possible correlation.

The next few years (2004-2007) were full of the highest anxiety I have ever had or ever knew possible. Being a new mother, having health issues, and now a device in my chest that could deliver a shock anytime was quite terrifying. I had a big depression during these years, and thankfully my parents are extremely supportive and helped me through it. We even had a period of time where we were living with my parents because I was afraid of being alone with the baby in case something happened. Those were some dark days.

During that time, I was also having a LOT of pain in my lower belly. My ovaries always felt swollen and painful. I was having bad headaches/migraines cyclically (which I later figured out was during full moon and new moon), and sleep – well, I DIDN’T sleep. I eventually had a hysterectomy. The doctor had suspected possible Adenomyosis (cousin to Endometriosis), but was not able to confirm it even after testing.
I think the insomnia is Babesia. Hormone issues? Well, that is a combo of all this Lyme and co-infections after reading through the symptom lists.

The kicker? The pain didn’t go away. Any of it.

In constant pain, wrapped in a prayer shawl waiting for a miracle…
In constant pain, wrapped in a prayer shawl, waiting for a miracle…

In October of 2008, I had to go to the emergency room, because I couldn’t breathe. My lungs felt like they couldn’t expand, and my breathing was shallow. I had a nebulizer treatment, was put on… PREDNISONE and antibiotics, and sent home. Did I mention that one of my lungs was partially collapsed? Good times.

This went on for over a year. Coughing, labored breathing, pulmonary function tests, allergy testing… everything inconclusive. Antibiotics and Prednisone was the answer to everything. I finally stopped taking all the garbage because it didn’t make these issues go away. Eventually it faded away on its own.
I believe this whole thing was me suffering from Mycoplasma Pneumoniae, a co-infection of Lyme Disease.

In the meantime, I was still having pain in my ovaries, migraines that grew worse as the years went on, and anxiety and insomnia. Added to the stress was that Ivan was also having a lot of symptoms, and Poppy was demonstrating traits of Autism. That is a whole different story, but needless to say, life was not fun, easy, or enjoyable during these years. I tried to be positive, but this all got the best of me for a long time.

It was also discovered that my thyroid crapped out. I get to be on meds for that for the rest of my life. Joy.

In 2012, I went to North Carolina by airplane to see a friend. I was sick and had a migraine for 24 hours after getting there. Looking back, anytime I travel by plane or car, I get sick for the first 24 hours. Planes are particularly bad for me.

In 2013, I had an episode of swollen glands in my armpit. I have since read that this is a Bartonella symptom.

As you can read, this has not been an easy road. This disease has taken so much from me in the last 18 years, and by the grace of God, in 2013 we were led to a naturopath that eventually figured out that our whole family has this and needs to be treated. I don’t know where we would be today if we had not seen her (to talk about Autism!)…

I tried talking to my regular doctor about Lyme after seeing the naturopath, but she was cruel about it, really. But that is a memory I would rather not share here because many of you know the experience of a disbelieving doctor first hand.

If you are a regular reader, you know that I started the first phase of treatment in December of 2013, by modifying my diet, getting more rest, balancing my hormones, learning how to detox my body, and preparing for the phase of treatment where we would go after these bugs/bacteria. I didn’t start the killing phase until just a few months ago, but all the prep work was worth it. This disease is not a “30 days and you’re cured” kind of thing – no matter what your family doctor that you trust and love tells you.

Many of you know what people go through to get a proper diagnosis, so to have a doctor mention this first was amazing. I honestly had no clue that all of us were suffering from this. I thought each of my medical problems were isolated and unrelated.

So here I am, 18 years later, and a whole lot wiser. We are all on the path to remission, thanks to perseverance, education, and a damn good Lyme doctor on our side.

We have been through many treatments at this point. I don’t think there is one treatment that will work for everyone. I think that getting Lyme into remission is a combination of many treatments, and when you feel that you have plateaued on one, it is time to move to another. One of the biggest and most important facets of treatment is to try to stay positive. I am not big on in-person “support” groups – people tend to be very sad and angry at these things, and that is not a good environment when fighting this. I have a couple Lyme buddies, and we share war stories, but we stay on the path of remission together.

That is my Lyme story. I cut out some of the graphic details, but you get the idea, right? Chances are you are walking the same path right now, or you are being blown off by doctors and specialists. I hope that you are led to a good Lyme doctor that you can partner up with and start treating this.

Please feel free to contact me if you need help or have questions (scroll down for the contact form). I don’t wish this disease on anyone, and if I can help you have a shorter road than we have had, then I am happy to help.

Please feel free to share this post with someone that you suspect may be going through medical problems that are being misdiagnosed or blown off by doctors. This disease is spreading, and over 300K people per year are diagnosed. Now add all the people that are misdiagnosed? That is a LOT of people. It is in all 50 states, contrary to what the CDC will have you believe. I have met people that contracted this in downtown San Diego. It is everywhere.

Lymes, Why?

A Story of Faith and Determination

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I will give thanks to the Lord with my whole heart; I will recount all of your wonderful deeds. I will be glad and exult in you; I will sing praises to your name, O Most High. (Psalm 9:1-2)

Giving thanks to the Lord, how sweet is my soul that I have the ability and the freedom to do so. Have you ever thought about how incredible it is to thank Him? To thank the one who has given so much more than we can imagine, without seeing, only knowing. To think about the incredible blessings that have been bestowed on this lowly being brings joy to my heart.

I have had problems writing on my blog the past week and therefore I am late in writing to you all. This is now May and it is Lyme Awareness Month. I have asked a few to share their stories and there are more that I would like to repost here for all to read. Think of it as an opportunity to be educated on this very real illness that plagues so many.

To start, I thought I would begin with my own story.

In July of 2013, I was very busy gardening in my own yard, working at a farm an hours drive away, and also sharing and working a large garden with a friend living 30 minutes from our home in the opposite direction. Previous to my full blown symptoms, I was noticing that I was having some balancing issues. I would step into the garden and sway slightly almost losing my balance. The first time it happened I didn’t think much of it, then it happened a few more times, giving me pause to wonder. I then woke up one morning early to mid July and as I walked down the stairs, I felt as though my foot was dragging. I had to keep looking down to make sure my foot was on the step. This continued for two weeks before I began to really get concerned. At about this same time, I also began to feel very tired. Who wouldn’t…I mean, all I did was work outside, travel with the kids and the band and try to keep up with cooking and housework. Every week I ran around non stop. The exhaustion however, took on a whole new level of “tired” when I would nap on the couch only to have my eyes feel like they were glued shut and I had to physically pull them open. My body also was physically unable to move. I could hear everything, and wanted so badly to communicate with others yet my exhaustion was so bad that I couldnt’ even form complete sentences. I wondered if I had had a stroke.

When the chills set in and the pain in my body was so bad that my husband couldn’t even hold my hand without me feeling like I wanted to scream I knew it was time to call the doctor. I gave her all my symptoms and she recommended two tests, a test to look into Rheumatoid arthritis and another for Lyme disease. What? Lyme? We pray for a gent at church who we rarely see because his symptoms are so bad with Lyme. So we ran both tests, and the Lyme was positive. The symptoms I was experiencing were more late stage Lyme, and in conferred with my doctor I requested a more natural approach to healing. Things began to make sense with the research I had been doing. Symptoms that were unexplainable for so many years. Was there finally a diagnosis?

I had at an early age, pains that would go up and down my legs throwing me into a tizzy because the pain was just awful. It was thought maybe they were growing pains or a mineral deficiency. Nothing would help them. I used to try hot baths, hot tub soaks, bananas for potassium, Tylenol, Alleve, the list goes on. I am now wondering if that could have been the start. I mean, we played in the woods all the time. The girl across the street had a tick on her head. They were definitely around. From the research I was learning that Lyme can lie dormant for not only months yet also years.

The summer after 8th grade, we had taken a trip to the east coast. When we were in Maine, I had an episode that had me nearly collapsing and my dad carried me back to the camper so that I could rest. Yes, we were camping in the east. Hmmmm….

In high school I began having what was diagnosed as superventricular tachycardia’s. At first we thought I was hyperventilating. Having them through college and early into my marriage, I finally had a heart ablation to alleviate the symptoms. CAUSE? Unknown! Amazingly these symptoms began the school year after the summer trip out east. Another hmmmm….

Before homeschooling, the kids were in public school. I was there nearly everyday volunteering in some capacity. I used the bathroom one day and about 2-3 weeks later I noticed a rash ring on my leg. Now, it wasn’t too high up my thigh, yet it was a ring. I actually thought it could be ring worm and I treated it and didn’t think about it again. Something to note is that this was also during the time that I would run the trail which was in the woods at our lake cottage.

About a year later I began noticing my energy levels dropping, I was feeling some of those pains again that I had had in my earlier years and I was just generally not feeling well. I also started gaining weight which I could not lose. I laugh that I was a weight watchers drop out. I went for three months, followed their diet and exercise plan only to gain weight. WHAT? Yes, I gained weight. WW had worked for me in the past so what in the world was going on now? I found an internist that tested me for Rheumatoid, fibromyalgia, thyroid and more only to receive results that were inconclusive.

Fast forward to our current home three years here. I found an integrative doctor who tested me again for the above, only this time with proper testing, found that I was in fact hypothyroid, I had cortisol issues, my adrenals were on shut down, and not only was our son celiac, we all tested positive! Mine turned out to show I was severely. Three of us also tested positive for food intolerance’s.

Hence, the reason the doctor and I both agreed that all of my above issues were likely the symptoms of the underlying issue, Lyme disease. It’s not too difficult to believe when you begin to read about Lyme and the symptoms that have plagued others for years. I must have either been bitten again, triggering a full blown Lyme reaction or my immune system and adrenals just could not cope with my activity level that summer. I had showed my son a deer tick that I found while gardening…guess I should also have checked over my body when we were done. Ironically, that was the same summer that our son had 4 rounds of strep back to back. Coincidence? I think not! Especially since both of us got sick after that little tick show and tell moment.

In all I spent 10 months battling fatigue, brain fog, speech issues, memory loss, extreme daily pain, loss of balance, tinnitus, hearing sensitivity and multiple co-infections and viruses that attacked my body. I could not walk down the driveway and had to use a wheelchair for any distances longer than a few yards, I could not walk up the stairs at night without almost passing out, I was unable to bend over to pick something up without losing my breath and almost passing out, I was falling asleep at 5 at night only to wake up at 2 with insomnia and then would fall asleep at 6 or 7 in the morning without waking up until 10. When I would lay down for a nap, my eyes felt like someone had sewed them shut and yet I could hear everything going on around me. I remember telling my husband that I wondered if that’s what it’s like for someone whose comatose. To hear everything and wanting to speak out yet not being able to.

One virus I acquired attacked my heart and I was told complete bed rest was necessary. The virus I had actually has 6 strains, of which I had tested positive for 5 of the six. If I wanted to make dinner, I was to have others wash veggies, cut them and all I was allowed to do was put it into the oven or give directions. I was showering every few days when I had the energy to actually do so, I wasn’t able to speak clearly when I was tired as I sounded like I was inebriated, I would try at times to talk to my family or friends and the words would just not formulate in my brain. I would forget names of people that I’ve known most of my life and I couldn’t remember the names of items or things, like trees or squirrels.

To friends and family it was the most shocking thing to watch, and for me I was determined to survive. When I was able, I read and studied as much as I could about the bacteria that had changed my life. I was determined to educate myself and my family so that we could all understand and cope together. I was also determined to overcome and I prayed daily that the Lord would heal me and use what I had been through to help others. I studied God’s word knowing that His truth would set me free from the bondage that I was experiencing. That my experience and what I had learned would be of value in helping others to heal. The experience of keeping my head up and remembering God’s grace in my life and His healing power was something I held onto and hoped others would see. I prayed that nothing our family was going through would be wasted, only that we would be able to encourage others, from the side of the patient to that of the caretaker.

Without failure, Gods plan and blessing for our family was for remission and for enough healing that life has become a little more normal. It is not what it once was, yet it is definitely better than what it had been. I still have moments of brain fog when I’m tired, I still have exhaustion when I do more than I should, and I still have pain as well when the weather is changing. My immunity is terrible and I catch everything I’m exposed too. Living in a bubble is not an option. The tinnitus in my ears is becoming the new normal and the change in my eyesight has me slightly troubled, yet I will not fret.

This blog began when I needed something to do to keep my mind active. It has become an avenue for me to share what I know to be a help for others. I have met and prayed for so many affected by Lyme the past few years, and I praise God for the opportunity to understand it and learn. Education isn’t cheap, and trust me when I tell you that my medical bills and supplement bills monthly/bi-monthly speak to that. I do however value that education that I have been given and I see it as part of God’s plan to help others in their own healing. I do keep in mind that you can lead a horse to water, you cannot however make him drink it. Every person with a debilitating illness and unknown or questionable diagnosis has their own decisions to make in their healthcare. For me and for my family, we continually ask the big question….why? For every symptom, there is a cause. Nearly all causes are bacterial, viral or parasitic. Which one is the cause and what the adequate treatment plan should be is the challenge. Finding the right doctor that will hear what you have to say and that will educate himself/herself are the doctors that I find to be the ones pioneering in the healing of Lyme.

I hope to continue sharing information, educational materials and other stories of faith and healing in dealing with Lyme disease this month. If you are a Lyme warrior, please email me your story and let’s share with others how to cope. Keep in mind, you are not alone.

Remember, this disease is estimated to surpass breast cancer. You will or do know someone who is affected.

Lymes

Spring? Is it here?

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Each spring brings a new awareness to life.  As my body adjusts to the weather and becomes more alive without pain, I enjoy hearing the birds sing as they do their morning chores.  Of course, I sit with a cup of tea these days on the chaise lounge brought home from our cottage and listen to them as they prepare for babies and scour the landscape for a bug that pops his head out.  I often am so engrossed in their song that I forget I too have chores to accomplish and winter clean up needs to begin.  These are lovely mornings all the same and it brings me joy to know that God has created such beauty to be enjoyed.

In the last week, I have been able to not just listen to the birds, yet I have had the privilege of observing with great pleasure I might add, the sweet gray squirrel who has decided to build a nest in one of our trees.  Every morning she has been bustling up the tree with limbs in her mouth (almost falling a few times when the limbs got stuck in other limbs…to my amuzement of course.)  Yesterday, she caught my eye as she hopped through the yard with a napkin of some sort adding it to the structure with care.  She then proceeded to climb up and down the tree chewing off small limbs and adding them, weaving them in a out of the base of her nest.  Although we live in a suburb that is not quite considered rural, we have enjoyed in our yard the playing of coyotes (not sure that is a good thing), deer that walk right past the window (which is  little freaky at night), a fox, owls (that choose different peaks to hoot on), lots of birds, possum, raccoons (that eat the leftovers after our cook outs..yikes, right up to the doorway), frogs, squirrels and farm cats.  (Yes, I’ve left out snakes because at this point I’ve not seen one and I continue to hope I will not…I know they are there as the kids have seem them in the path to other neighborhoods, which I choose to avoid).  Even still, I enjoy all of it.  I enjoy the animals that share our little area of the world and enjoy observing their habitat.

With all these delightful creatures also comes a little caution.  With May quickly approaching I am reminded that it is once again Lyme Disease Awareness Month.  A time for people to understand that this is a very real concern.  For those who have it, all too real, for those who don’t, it tends to be something “they” don’t have to worry about.  A few facts that everyone should be aware of, not scared of, but aware of:

  1.  Results of  studies have suggested that the number of people diagnosed with Lyme disease each year in the United States is around 300,000. (CDC.gov)  Yet, In 2016, an estimated 246,660 new cases of invasive breast cancer are expected to be diagnosed in women in the U.S. (breast cancer.org).  Lyme Disease has surpassed new breast cancer diagnosis.  Why is it not discussed, understood, studied, and treated with the same care?  Why do so many struggle with illnesses that doctors cannot diagnose?  Why do so many health care professionals keep patients in limbo sending them to doctor after doctor, study after study when testing could be done to find the causes of their illnesses.  With the statistics given we are told that 1 in 8 women will develop breast cancer in her lifetime.  So does that mean that 1 in 5 or 6 will experience Lyme disease?  Or should I say, one of the 101 strains of Borreliosis?  Yes, 101 strains.  The current test only tests for 1, and there are 101 strains.  See the problem?
  2. Every state in the nation has been touched by Lyme.  It is not contained solely in the Midwest or Northeast.  Yes, approximately 13-15 states do hold 96% of the confirmed cases, however, every state has had confirmed cases. (CDC.org)  It is not only a U.S. issue.  Other countries have also had confirmed cases, and again, the arguments continue as to treatment, acceptance of this disease, it’s presence in their country and it’s ability to mask itself making diagnosis difficult.  Even Lyme Carditis should be considered by health care professionals as a cause when it comes to cardiac symptoms and a patient has either been diagnosed, or has been in an area of high Lyme rates.  (http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6343a4.htm).    Lyme disease is not limited to a one month symptom of flue like symptoms or fatigue that can be cured quickly.  It is called the great imitator for a reason.
  3. Lyme disease does not always present a rash as earlier thought.  There have been statistics of rashes occurring that range between 15%-80%.  All depends upon who is writing the research.  Sometimes a bite may be represented as a bruise.  Many times one does not even realize they have been bitten as no mark is represented.  If that is the case, then the symptoms to be aware of are flu like, headaches, muscle aches, fatigue, and anything additional that is out of the ordinary.  If one knows they have been bitten by a tick, it is in ones best interest to save the tick in it’s most complete state of being and send it to a lab for accurate diagnosis.  This cost can range between $50-$100.  There are labs that run these test and the ones with more accuracy are in the east.
  4. It is very important to recognize that if Lyme disease is not diagnosed and treated early, the spirochetes can proliferate, spreading to various organs, tissues and muscles waiting for the right opportunity to wreak havoc on the unsuspecting host. Weeks, months or even years later, patients may develop problems with the brain and nervous system, muscles and joints, heart and circulation, digestion, reproductive system, and skin. Symptoms may disappear even without treatment and different symptoms may appear at different times.   (http://www.lymedisease.org/lyme-basics/lyme-disease/chronic-lyme/)
  5. There is great controversy as to the tests being run for diagnosis.  It’s best to do your research and homework when it comes to Lyme so that if you encounter it within your family or if you yourself are faced with decisions concerning Lyme you can be well prepared.  Here is some information regarding testing and the reasons for some of the controversy.     http://www.lymedisease.org/lyme-basics/lyme-disease/diagnosis/
  6. Lyme was first discovered in Lyme Connecticut.  Due to the extensive amount of time and effort in concluding a patients symptoms relative to Lyme and then confirming through testing a Lyme diagnosis, trusting labs on the east coast of the states is not something to criticize.  They have worked with it for many years, have pioneered in their studies of Lyme and they see it daily.  Here is one such group that has put together a list of symptoms that are related to Lyme or Borreliosis:  (http://www.lymeresearchalliance.org/signs-symptom-list.html) 

    SOME OF THE MANY SYMPTOMS OF LYME DISEASE ARE:   
    Head, Face, Neck:

    Headache
    Facial paralysis (like Bell’s palsy)
    Tingling of nose, cheek, or face
    Stiff neck
    Sore throat, swollen glands
    Heightened allergic sensitivities
    Twitching of facial/other muscles
    Jaw pain/stiffness (like TMJ)
    Change in smell, taste

    Digestive/excretory System:

    Upset stomach (nausea, vomiting)
    Irritable bladder
    Unexplained weight loss or gain
    Loss of appetite, anorexia

    Respiratory/Circulatory Systems:

    Difficulty breathingNight sweats or unexplained chills
    Heart palpitations
    Diminished exercise tolerance
    Heart block, murmur
    Chest pain or rib soreness

    Psychiatric Symptoms:

    Mood swings, irritability, agitation
    Depression and anxiety
    Personality changes
    Malaise
    Aggressive behavior / impulsiveness
    Suicidal thoughts (rare cases of suicide)
    Overemotional reactions, crying easily
    Disturbed sleep: too much, too little, difficulty falling or staying asleep
    Suspiciousness, paranoia, hallucinations
    Feeling as though you are losing your mind
    Obsessive-compulsive behavior
    Bipolar disorder/manic behavior
    Schizophrenic-like state, including hallucinations

    Cognitive Symptoms:

    Dementia
    Forgetfulness, memory loss (short or long term)
    Poor school or work performance
    Attention deficit problems, distractibility
    Confusion, difficulty thinking
    Difficulty with concentration, reading, spelling
    Disorientation: getting or feeling lost

    Reproduction and Sexuality:

    Females:

    Unexplained menstrual pain, irregularity
    Reproduction problems, miscarriage, stillbirth, premature birth, neonatal
    Death, congenital Lyme disease
    Extreme PMS symptoms
    Males:

    Testicular or pelvic pain

    Eye, Vision:

    Double or blurry vision, vision changes
    Wandering or lazy eye
    Conjunctivitis (pink eye)
    Oversensitivity to light
    Eye pain or swelling around eyes
    Floaters/spots in the line of sight
    Red eyes

    Ears/Hearing:

    Decreased hearing
    Ringing or buzzing in ears
    Sound sensitivity
    Pain in ears

    Musculoskeletal System:

    Joint pain, swelling, or stiffness
    Shifting joint pains
    Muscle pain or cramps
    Poor muscle coordination, loss of reflexes
    Loss of muscle tone, muscle weakness

    Neurologic System:

    Numbness in body, tingling, pinpricks
    Burning/stabbing sensations in the body
    Burning in feet
    Weakness or paralysis of limbs
    Tremors or unexplained shaking
    Seizures, stroke
    Poor balance, dizziness, difficulty walking
    Increased motion sickness, wooziness
    Lightheadedness, fainting
    Encephalopathy (cognitive impairment from brain involvement)
    Encephalitis (inflammation of the brain)
    Meningitis (inflammation of the protective membrane around the brain)
    Encephalomyelitis (inflammation of the brain and spinal cord)
    Academic or vocational decline
    Difficulty with multitasking
    Difficulty with organization and planning
    Auditory processing problems
    Word finding problems
    Slowed speed of processing

    Skin Problems:

    Benign tumor-like nodules
    Erethyma Migrans (rash)

    General Well-being:

    Decreased interest in play (children)
    Extreme fatigue, tiredness, exhaustion
    Unexplained fevers (high or low grade)
    Flu-like symptoms (early in the illness)
    Symptoms seem to change, come and go

    Other Organ Problems:

    Dysfunction of the thyroid (under or over active thyroid glands)
    Liver inflammation
    Bladder & Kidney problems (including bed wetting)

  7. Many lyme experts claim that it’s just not a tick born illness any longer.  It can be spread by mosquitos, fleas, spiders and any biting insect.  Although the theory that these insects can transfer the disease is debated, it has been proven that they can be hosts to the disease and it’s co-infections, whether or not they too can transfer the disease to humans is what is being debated.  (http://www.lymedisease.org/lyme-basics/co-infections/about-co-infections/)

Lyme disease can sound really scary when you read all of these, and it can seem that everything one experiences could be Lyme.  This may or may not be the case.  Lyme needs to be understood, accepted and embraced as a real disease with real consequences.  People need to understand not just how to remove the ticks, they also need to understand the disease itself, it’s co-infections and it’s long lasting results if not dealt with.  They need to understand that it’s much more common than one thinks and that the statistics show it’s more common than breast cancer.  Do you know someone with breast cancer?  Odd’s are you do and guess what?  You also know someone with Lyme Disease, you and they may just not know it yet.

With Lyme Awareness Month coming up, please consider becoming more aware of how you too can help others understand Lyme disease.  It is with great hope that those of us that are experiencing Lyme disease every day will have people close to them understand that this is real, it’s abusive to the body, and it’s something that is tolerated and dealt with daily.  Each of us makes accommodations to our new lifestyle and each of us is different in our symptoms.  We just want people to understand that our lives are shared now with a pathogen that shows no mercy and it’s main job is destruction.  It’s victims are not limited in age, gender, social status or nationality.  As a friend or family member of someone stricken with Lyme Disease, compassion and love is extremely important.  We want our lives to be as normal as possible, yet at the same time it is not.  For those not affected, imagining the daily struggles is not always understood.  That’s why May is such an important month.  Please educate yourself, be aware of your surroundings and be aware that Lyme is a beast that researchers are still studying and much is yet to be learned.

I thank you reader for helping to educate yourself and for spreading the word on Lyme Disease.

Check out also:   http://chroniclymediseasesummit.com/?inf_contact_key=bbc2510f5bf3faedddfcffda895aaf8aac768bd582055e230bd0c6967c3b8983

Proverbs 31:10-31