Jan 31, 2016

How I Was Loved Through My Illness With Lyme Disease

In some ways it seems so long ago when I first began getting sick and having intense pain from Lyme disease.  It's hard to remember details of those difficult days, pain and fatigue can do that to you.

One thing I do clearly remember though, is the love and care my family showed me when my health was declining.

It wasn't just my husband and children but also my parents and other extended family members.  I realize how chronic illness can negatively affect relationships and especially a marriage so believe me I know how blessed I am.

When my symptoms were at their worst my whole life was impacted.  I couldn't keep up with my daily routine and most of the time I didn't even realize it.

I was in severe pain all the time and was completely wiped out with fatigue.

I was sure I had early onset dementia, I  missed doctor appointments, didn't know what to buy at the grocery store and couldn't remember anything, including conversations that took place 5 minutes ago.  I didn't recognize where I was when driving on roads I had traveled for over 10 years.  It was a very scary thing.

My husband recognized that my health was declining and went into action mode. 

He helped me figure out what I needed to do each day, encouraged me to make specific doctor appointments, helped in the evening with the kids, dinner and cleaning and he prayed with me and for me.

Now please don't get me wrong, not everything got done.  Dinner would often be prepared processed meals or take out.  The house didn't get a good deep scrubbing and only the really important things got done.

I know this was a really hard time for my husband, after all, watching your spouse's health deteriorate while not knowing why can be just as difficult as being the one who is sick.

I really didn't think much about it until the other day when I read an article about one persons experience with how badly they had been treated by family and friends when they shared the news of their illness.

While I didn't realize it at the time, my husband showed great love and care for me and has continued to do so through my illness even as he was later diagnosed with Lyme and coinfections. 

He believed me when I explained my pain and fatigue. He rallied our children together, made a chore chart and encouraged the children to help Mommy as much as possible.

My children were young but they helped as much as they could. They would get things for me, helped care for their new little brother, rubbed my neck, made me soup, and prayed for me.

When I finally got a diagnosis of Lyme Disease we didn't know what that meant at the time but we were relieved that there was a reason for my declining health and felt that now we could address it and I would get better.

I remember telling extended family and friends who were also very supportive.

My extended family were so empathetic and encouraging.  They listened, they hugged me, they told me they'd be praying for me and that they were sorry I had to go through this.  They asked me what this meant, what the treatment was and what my symptoms were.

They continue to be supportive and loving even still. I can't visit as often as they'd like and sometimes I wouldn't be able to make a special lunch we had planned but they've always been patient and supportive.

Close friends responded the same and have always been supportive and caring even though they didn't really know what I was going through.

There have been those along the way who say that Lyme disease really isn't that bad because after all so and so's child had it and went on antibiotics and they've been just fine.  

There are also those that continue to tell us that we focus too much on Lyme disease and it's really not a big deal.  They tell us that they've been bitten numerous times through the years and have never had problems.

Sometimes I hear that a spouse or parent is the naysayer or gets angry because their loved one "acts" sick all the time.  Most of us have already experienced this with a physician or two and I'm sure many of us have heard, "well at least it's not cancer!".

There will always be "those" people in our lives who are not compassionate or supportive.  There will always be those who don't believe that our illness is real.

I'm hopeful that the more information we get out about Lyme & tick-borne diseases, about what it's really like to live with it; how it affects a person, their job, their relationships, their life, that just maybe people will be more understanding and caring to their loved ones and maybe our doctors will believe us.

Sometimes loving others comes in the form of being there, asking questions, listening and helping out even when you don't understand.  We should all learn to love one another and appreciate those who love us.

Jan 23, 2016

My Blogging Anniversary

Just one year ago today I began my blogging adventure.  I honestly didn't think blogging was something that I would want to do or have time for.  My sister, close friends and even acquaintances I shared my story with, kept insisting I put my experience down in a blog for others to read.

My sister wanted a place where she could send her friends and contacts so they could easily find information about Lyme disease.

Other Moms I met along the way wanted a place where they could go to find encouragement to homeschool either while being sick themselves or taking care of their children who were sick.

Then there were those I met who really needed a one-stop place to go to in order to find the information they needed about tick-borne diseases and to learn how to find the medical help they needed.

I'm really glad I was encouraged to embark on this blogging journey.  I had no idea how blogging would help me use my passion to get the word out about tick-borne diseases and I'm thrilled that my blog has been able to help others.

I love hearing stories about how you found my blog, shared with a loved one or how much it has encouraged you.  All of your feedback encourages me to keep going.  It helps me to know what information to share and quite honestly keeps me blogging.  When I don't hear from you I sometimes get discouraged and wonder if I'm spending time writing for no reason.

Living with chronic pain and disease has been an experience I wouldn't wish on anyone, but I know it's a reality for many.  My hope is that you are encouraged and are able to find the resources you need here.

If you have just a minute could you leave me a comment and let me know how my blog has helped you? What are your favorite sections or posts? What would you like to see more of in future posts?

I wouldn't have a 1 year blogging anniversary without you.  So thanks for visiting, reading, interacting with me and sharing my blog with others.  I'm looking forward to what this next year has for all of us while we're on this journey together.

Jan 18, 2016

How A Tick Bite Changed My Daughter - Part 3

Healing With Homeopathy

Read Part 1 How A Tick Bite Changed My Daughter
Read Part 2 Using Supplements to Nourish the Brain

I've been sharing a deeply personal story of how Lyme disease changed my daughter. If you missed them you can find them here. Part 1 The Psychological Affects Of Lyme Disease and Part 2 Using Supplements To Nourish The Brain

Most people associate Lyme disease with joint pain and fatigue and are surprised to learn that Lyme and coinfections can also affect their emotional and mental health.

Not many people expect a tick bite to result in panic attacks, rage, OCD or any other type of mental illness, but it can and it does for a large number of people.

Unfortunately many children and teens are plagued with mental illness and no one stops to think that it could be caused by a tick-borne infection.

Our home was turned upside down when our daughter was began having severe anxiety, panic attacks, OCD and rage.   

Antibiotic treatment only made her worse, anti-depressants didn't help and anti-anxiety medication made her sleepy and nonfunctional.

I was so excited when I found information from Dr. Klinghardt on YouTube and Trudy Scott through the Anxiety Summit about nutritional support and supplements that could possibly help my daughter.  I shared more about this in detail in Part 2.

I began using the supplements recommended and changed her diet. My daughter began to improve with each day and before long she was doing many things for herself without getting stuck by OCD.  
We had 3 wonderful months with this beautiful and talented young girl.  I saw my real daughter again for the first time in a long time.  

However, over time, the supplements proved to not be enough and her OCD began to creep back in and anxiety began to cripple her all over again regaining intensity with each day.  

While the supplements helped and we continued to use them, especially GABA, she was not getting better.

Her doctor was at a loss as to how to help her.  She told me that there was nothing more she could do and that I just needed to take her back to the psychiatrist.

Her therapist was also at a loss and with a heavy heart felt there was nothing more she could do to help her because she wasn't willing or able to do her therapy homework and we weren't making progress.

I found myself in the most horrible place a mother could ever find herself, I was desperate and hopeless.  

I was exhausted, worried that we wouldn't find a way to help her and that she would be this way for the rest of her life.  

The stress in our home was overwhelming and this poor girl, crippled and controlled by tick-borne infections needed help.  

I needed help too! I felt like I couldn't care for her anymore! I felt like I couldn't tolerate one more tantrum, help her get dressed again, defend her behavior, or stay up another night telling her everything would be ok, but I couldn't give up either.

I was introduced to a woman at church who is a Registered Nurse and used to work for a Lyme doctor.  She also had first hand experience with Lyme when her son contracted it.

When I met her and listened to her experience I grew skeptical when she told me that her doctor helped her son get better in 4 months using homeopathic sprays. 

My initial thought was that there's no way a person with chronic Lyme disease and co-infections can recover in 4 months, after all we had already been in treatment for over 4 years.

But there he was sprawled out across several chairs looking like a normal teen.  

I graciously exchanged phone numbers and email addresses and walked away a little more discouraged.  

For some reason I couldn't stop thinking about our conversation and decided to email her.  The more we interacted the more I thought we should try to see this doctor.  After all, nothing else is helping and I had never heard of anyone getting better.

My daughter was diagnosed with Lyme and Bartonella when she was 9 but began having symptoms at the age of 7.  Later she was diagnosed with Babesia.

When I called to make an appointment there was over a 6 month waiting list but what else could I do?  I put her name on the list and explained as only a Mom can how important it was that we get in sooner.  I told them I was willing to drop everything and come if there was a cancellation.

After making the appointment I began to hope again.  I hoped that this new doctor would help my daughter the way he helped that young man at church. 

When our appointment came, this kind doctor evaluated her, did his testing and explained that he could get her better.  

His methods and his treatment practices were completely foreign to me. I didn't understand it and I even doubted him.

He told us that her symptoms could get worse before we saw any improvement. They did get worse and I threatened several times to take her off the remedies but my daughter had hope too and she refused to stop them.

By week 9, my daughter got up out of bed and came downstairs all by herself.  She was smiling and said, "Mom, I feel great today can I make cookies!" I was so thrilled I told her she could do anything she wanted to. This was only the beginning of her healing and of better days.

She has been under his care for almost 2 years now and has done amazingly well. In fact if you met her today you would never know that this story could be hers. We hardly remember those dark and difficult days.

She's now a healthy, vibrant and amazing young woman. She's doing great in school, loves to play the guitar, write music and sing.    

My girl knows this struggle made her stronger and that her story just might help someone else.  

She's no longer embarrassed or humiliated by this because she knows it was caused by tick-borne diseases and now that she feels great she wants to help and encourage others who struggle with fear, anxiety and OCD.  

If her story has encouraged you, would you leave her a comment below?  

If you identify with her story, don't give up hope. Keep searching, keep praying and remember that sometimes you have to get out of your comfort zone in order to find something that works.


P.S. If you'd like to learn more about our doctor, his practice, testing and treatment visit his website here:  Alternative Medicine Center

No claims are made as to how our treatment protocol may or may not help you individually or whether or not it would be useful for your unique health condition.  This blog post is not intended to be an endorsement of any specific product or treatment but rather a source of information for your own personal research.

Jan 3, 2016

How A Tick Bite Changed My Daughter - Part 2

Using Supplements To Nourish The Brain

When my third daughter turned 7 we had no idea that our whole lives were beginning to turn upside down by severe anxiety and OCD.

That summer I had just given birth to my son and a good friend offered to help by taking my 3 girls to her farm to spend Saturdays with her daughters.  They played in the fields, rode their ponies and spent time together enjoying the outdoors.

Each time they came home we pulled ticks from them, watched for a bulls-eye and in some cases would visit the pediatrician just to make sure they weren’t at risk for Lyme disease.

Jan 1, 2016

How A Tick Bite Changed My Daughter - Part 1

The Psychological Affects of Lyme Disease

You may have never heard this before but did you know that a little tiny tick can change your entire personality?  

Ticks can transmit the bacteria that causes Lyme disease. They also transmit many other bacteria, parasites, viruses and other pathogens.

I had never heard or read anything about this and when my youngest daughter began having psychological symptoms we didn't immediately think Lyme.

When she was 7 years old her behavior and personality began to change and she became controlled by anxiety and OCD.  

She had facial tics and made pinching motions with her fingers that later progressed to clinching her hands into fists so tightly that her knuckles would turn white.  

After her dad had an emergency appendectomy she became terrified that she too was going to need surgery.  

I took her to the pediatrician twice just to give her the peace of mind that she wasn't having an appendicitis.  The pediatrician examined her and told her that if she could jump on one foot she was not having an appendicitis.  

Naturally, she began jumping on one foot, constantly.  This became the way she moved through the house. 

After a few weeks she added hand washing to her obsessions.  She would scrub her hands until they bled.  She pooled saliva in her mouth and wouldn't swallow because she didn't want the germs going down her throat.  

I tried telling her that she was fine, I told her she wasn't going to get sick and that this was the way God designed our bodies to work.  I purchased a safe essential oils based hand sanitizer as an alternative to unnecessary hand washing.

Over the years her obsessions changed, her fears changed and symptoms changed, they intensified in severity and eventually became paralyzing.  

My easy going daughter became very angry, very aggressive and resistant to everything.  She was completely out of control and at times I had no idea how to interact with her and I certainly didn't know how to help her.

It was difficult to discern whether or not she was just being rebellious because when we went out to church, co-op or other group settings she behaved well.

She told me that she had to work very hard to hold it all in just to appear normal and when we returned home she would let it all out.  I tried to pay attention and began to notice her struggle when others may not have.

As time went on she refused to do her school work, refused to clean her room and refused to comply with even the smallest thing I asked of her.  She would always reply with the phrase "I can't".  Eventually, she would "get stuck" and couldn't move until someone in the house said the magic word which also changed with time.

I knew something wasn't right and her behavior became exhausting for her and me.  

We made many trips to our pediatrician who did a thorough physical evaluation and ran a small amount of blood work but she didn't feel anything else should be pursued and she sent me home with a list of books to read about how I could better parent my child.  

About two years after her initial symptoms I found out that I had chronic Lyme disease.  As I was reading about Lyme I discovered that all of her symptoms are also symptoms of Lyme disease and other tick-borne diseases, particularly Bartonella. Later we discovered it's also a symptom of Babesia. 

I pursued Lyme testing for my daughter but her labs always came out negative.  

I learned that blood tests are often inaccurate so I took her at least 3 more times within a 6 month period to have her blood tested but each time she was negative.  

My doctor assured me that she couldn't have Lyme even though she had a history of tick bites and a strange rash after one of the bites.  I was told that because she didn't have a bulls-eye or fever that her symptoms were unrelated.

We saved the money to take our daughter to the Lyme Literate MD (LLMD) that I was seeing and we tested her through MDL labs in New Jersey where she tested positive for several bands that were indicative of Lyme disease.

She was not CDC positive but according to the CDC Lyme must be a clinical diagnosis and so with these positive bands and the list of symptoms my doctor began treatment.

My LLMD informed me that her symptoms were classic for Bartonella so we began treatment for that as well.

Over the course of 4 years she was treated with different combinations of antibiotics, all very high doses as well as with anti-malarials for the Babesia infection.  

In the very beginning she had a lot of side effects from the high doses of medications. 

My sweet girl became afraid to leave the house and terrified for me to leave her.  She would stand at the door, blocking my way, with panic in her eyes and she would grip my arm as hard as she could in an effort to not let me leave.  

This was such a heart breaking and stressful time for me.  I took her with me almost everywhere I went but there were times I couldn't and then there were those times I needed a break from her.

Sometimes I would have to physically move her so that I could get out the door while she stood there screaming and scared.  I felt like the worse mother alive. The guilt sometimes overwhelmed me.

She slept on the floor in my room for over 2 years.  Some nights I would wake to find her pacing around my bed with wide scared eyes.  She was terrified of thunderstorms and was certain we would be killed by a tornado even if there weren't any warnings.

During treatment we recognized that certain combinations of antibiotics were helpful for a time and would give her a break from these crippling symptoms but it wouldn't last for more than a few months, sometimes for only a few weeks and her symptoms would return with a vengeance. 

I was so desperate to help my little girl and she was quickly approaching puberty so I knew I needed to find something that could help her before she entered that already difficult time.  

By the time she was 12 her symptoms grew worse but they did fluctuate depending on which combination of medications she was on.  Certain meds made her OCD and anxiety worse while other meds made her rage worse.

In February of 2013 we were all sent to the lab for blood-work to test for Babesia Microti and Babesia WA-1 Duncani.  Our tests came back positive for Babesia WA-1 Duncani, including my daughter.

Babesia is a parasite that affects the red blood cells and is very similar to Malaria.

It's important to note that this strain is thought to only be contracted on the West Coast only but it is prevalent on the East Coast. 

Clongen Labs did a tick sweep not too far from our hometown and found that half the ticks collected carried Babesia but not Lyme.  The majority of ticks found were the lone star tick and not the expected black legged deer tick.  You can read more about that here Ticks Found In Quince Orchard Test

When my daughter began the anti-malarial medication we noticed a big difference in the beginning but soon her symptoms began to worsen.  Some days she would be curled up in the fetal position right in the middle of the floor and we often had to walk over her in order to get through the room.  She would stay there until she finally allowed me to help her over to the couch or up to her room. 

I became her full-time caretaker from the moment her eyes opened in the morning until she would finally fall asleep in the middle of the night.  Even our nights were often interrupted with panic attacks.

I became desperate to help my daughter.  I felt like the medication was only making her worse. I continued to scour the Internet for something that would help. I called other Lyme friends, consulted doctors and prayed like crazy.

Next time I'll share more of our journey as well as very helpful links, supplements that helped my daughter and I'll introduce you to a nutritionist who provided help and direction without even knowing it. 

Read Part 2 Using Supplements to Nourish the Brain

*** At the time of this posting it's been almost 2 years since we stopped antibiotic treatment, my daughter is now 15 and has been doing great. 

No claims are made as to how our treatment protocol may or may not help you individually or whether or not it would be useful for your unique health condition.  This blog post is not intended to be an endorsement of any specific product or treatment but rather a source of information for your own personal research.