Tag Archives: Borreliosis

A Story of Faith and Determination

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.

Spring? Is it here?

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.   (https://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.     https://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.  (https://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