Chronic Lyme Disease

WHAT IS LYME DISEASE

Lyme Disease is a spiral-shaped bacteria (spirochete) called Borrelia Burgdorferi that is very similar in appearance to the spirochete bacteria found in the disease Syphilis.  People become infected with the disease through a tic bite, usually a deer tic that is about the size of a poppy seed.  Only 50% of people who contract the disease recall having a tic bite.  Additionally, approximately 50% of Lyme patients have a rash known as Erythema Migrans or EM, which is typically shaped like a bulls eye. 

PREVALANCE IN THE US

Lyme Disease is reportedly the top vector-born illness in the US, however only about 10% cases are actually reported to the Centers for Disease Control (CDC).  Lyme Disease has been reported throughout the US, however is most prevalent in parts of New England, Wisconsin, Minnesota, and California.  It is considered to be one of the most dangerous and deadly infections, often more dangerous than West Nile Virus and other vector-born illnesses.

LYME CO-INFECTIONS

Patients with Lyme Disease often have other co-infections, which could include diseases such as Ehrlichia, Babesia, and Bartonella.  These co-infections can complicate symptoms and treatment.  Practitioners will sometimes test and treat other co-infections along with Lyme.

DIAGNOSIS

Currently, most doctors test for Lyme Disease through a Western Blot, looking for specific antibodies to Borrelia Burgdorferi in strips or bands.  There needs to be a certain number of positive bands in order for the test to be considered as positive for Lyme Disease.  This test is reported to be unreliable because the Borrelia is able to change its outer protein cast and hide from blood tests.  Frequently, patients have false negative tests.  Practitioners will sometimes make a clinical diagnosis based on multiple factors.

With early detection, Lyme Disease is easily treated with a 21-day round of antibiotic therapy.  Unfortunately, many people are unaware that they have the disease.  This is probably partially due to the fact that symptoms of Lyme can be mild at first and mimic other conditions.  The symptoms increase in severity over time as the spirochetes burrow deep into tissue, organs, joints, and the central nervous system.  The longer an individual has the disease, the more difficult it is to diagnose and treat, progressing into a condition known as Chronic Lyme Disease.

LYME SYMPTOMS

Lyme Disease can imitate or mimic other diseases and conditions.  Often people with Lyme Disease are misdiagnosed with Fibromyalgia, Arthritis, Chronic Fatigue Syndrome, Parkinson’s, MS, ALS, Mental Illness, and other similar conditions. 

The disease manifests differently in patients ranging in the acuity of symptoms and the length of time before symptoms become more severe.  Many people have the disease for months or years before realizing they have it.  Symptoms vary from person to person, however may include headache, stiff neck, difficulty sleeping, weakness, fatigue, severe muscular and/or joint pain, numbness/tingling, muscle twitching, sensitivity to light and/or sound, dizziness, vertigo, loss of balance, ringing ears, hearing loss, paralysis in the face, difficulty with memory/concentration, depression, and anxiety.  As the disease progresses it can affect all the systems of the body, attacking the heart, central nervous system, and brain.  With Chronic Lyme Disease, the symptoms become more severe and debilitating.  Some patients experience neurological problems.

TREATMENT FOR LYME DISEASE

Chronic Lyme patients have often expressed frustration and loss of hope in seeking answers and treatment for such a devastating disease.  Many doctors have reportedly been uneducated about this complex disease, leading to a misdiagnosis or inability to give the patient proper treatment.  Patients may be referred to numerous doctors unable to get definite answers as to what their diagnosis is or finding a treatment for the disease.  Some doctors may refuse to admit that there is such a condition as Chronic Lyme Disease.  Doctors may also claim that standard 2-3 week antibiotic therapy is sufficient to treat all Lyme Disease cases.  As the spirochetes burrow deep into tissues and organs of the body, Borrelia is able to hide from antibiotics, needing a more aggressive approach to kill the disease.  Currently, the reportedly most effective medical treatment for Chronic Lyme Disease is long-term use of both oral and IV antibiotics for months at a time.  Many doctors are unable to provide this aggressive antibiotic therapy due to the scrutiny of this type of treatment in the medical community.  When undergoing treatment for Lyme, patients sometimes report a severe and acute reaction called Jarisch-Herxheimer. This is an adverse reaction to the toxins released into the body as large amounts of spirochetes are dying off. 

A Chronic Lyme patient that is interested in long-term antibiotic therapy would have the most success in seeking out a Lyme Literate Doctor to provide this type of treatment.  Lyme Literate Doctors are difficult to find due to the controversy associated with this type of treatment.  Lyme Literate Doctors are often unable to bill insurance for services.  Some lab tests may be coverable, however it can become very expensive for the patient.  To find a Lyme Literate Doctor closest to your region, you can go to this link:

https://www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

ALTERNATIVE TREATMENTS

Because of the difficulty in treating the disease, potential mounting medical expenses involved, and the reported “Lyme Wars” going on in the medical community, Lyme patients are often seeking out holistic medicine and holistic practitioners to treat Lyme Disease.  Cats Claw and Samento are two of the more common type of Lyme-killing herbs, however there are numerous options available.  Nutrition and diet are very important factors in treating the disease holistically.  You can purchase books and guides for treating yourself with Lyme disease, however I recommend seeking the help of a holistic doctor or practitioner as these herbs are potent and you do not know how your body will react to them.  Practitioners are often able to identify the presence of the disease through using forms of kinesiology and bioresonance testing.  This type of testing is useful in identifying other co-infections, toxins, and health problems that are affecting the Lyme patient.  Bioresonance testing is also very beneficial for testing the individual’s ability to tolerate specific herbal remedies.  Field Control Therapy is a safe and effective alternative to treating Lyme Disease, and the option that I chose for myself. 

For more information on using Field Control Therapy to treat Lyme you can read my blog:  http://dzehm.blogspot.com/2013/11/health-wellness-and-beauty-of_4739.html

Whether you are using antibiotics, holistic medicine, or combination therapies, there usually is no fast or easy approach in treating Chronic Lyme Disease.  You may find that your symptoms worsen for a time before you start to see an improvement.  Treatments can last for months and sometimes years depending on the severity of the disease and other factors and health problems involved. 

For my personal experience with Lyme disease:  http://dzehm.blogspot.com/2012/11/enduring-winter-my-battle-with-lyme.html

LYME RESOURCES

The information in this blog post is based on my own personal experience with having Lyme Disease along with the research I’ve done through reading books, looking at web-sites, and watching documentaries/videos.  I am not an expert on Lyme disease, medicine, or holistic health.  For further information about the disease see the following links.  I will provide further links and information regarding holistic health in future posts.

International Lyme and Associated Diseases Society:

http://www.ilads.org/

Lyme Disease Association:

http://www.lymediseaseassociation.org/

Website for Author and Lyme Disease Survivor, Brandilyn Collins:

http://brandilyncollins.com/lymedisease

Lyme Disease Blog:

http://www.lymediseaseblog.com/

Award Winning Documentary, Under Our Skin:

http://underourskin.com/film/

http://underourskin.com/sequel/#sequel-home

Clip about Lyme Disease on the TV show, Dr. Phil:

http://www.youtube.com/watch?v=reqyYSAFb9I

Enduring the Winter: My Battle with Lyme Disease

When I started this blog in 2011, I believed that I was coming off of a time of tribulation in my life, expecting that things would only get better.  I figured that I would be able to inspire others by sharing my personal testimony and bring hope in the lives of those struggling with personal difficulties.  What I didn't anticipate was that it was just the tip of the iceberg.  In August of last year, I wrote what I believed to be my personal testimony in “Broken for His Glory”. During that time, I described what seemed to me a very long and weary struggle with chronic vertigo, pain, and weakness.  Surely, things could not get any worse!  Looking back, I realize that during that time, I was being prepared to endure a long winter in the wilderness.  As my health spiraled downward, I entered a deep cold spiritual darkness.  I was beyond disappointed.  I just couldn't understand where I went wrong, so I decided to take a break from my blog while I sorted things out.   It was a very long winter to endure, but God carried me through it. 

WHERE WINTER BEGAN

The summer of 20ll was a very special time for my kids and I.  They absolutely loved having their mom home with them.  We took daily walks in the neighborhood, weekly trips to the library and park together, and even spent a couple of days at the beach.  I tried to ignore my weakness and dizziness as much as possible hoping it would eventually go away.  Towards the end of the summer, I began to notice new symptoms emerging.  The pain spread from my upper back, neck, and shoulders to my ribs and chest.  I started having very sharp chest pains that compromised my breathing.  Where I should have been getting stronger from my daily physical therapy exercises, I was becoming weaker. It was becoming increasingly difficult to participate in outings with the family and church activities.  The pain and weakness eventually spread to my arms and legs, further compromising my mobility.  I knew something wasn't right yet I couldn't pinpoint what it was.  By early October my exercise program and life as I knew it came to a screeching halt.

SEEKING ANSWERS

Around that time, I listened to a pod cast on KTIS from Susie Larson that changed my outlook on everything.  In the pod cast, she interviewed author, Brandilyn Collins, about a disease called Lyme Disease. I met Susie earlier that year, and heard part of her testimony of how chronic Lyme Disease impacted her life and became the “platform” for her ministry. I did not know much about the disease itself until I listened to the interview.   As both Brandilyn and Susie shared their personal experiences, I realized that they were describing some of my own symptoms.  I went on Brandilyn’s website and started researching the disease.

 I discussed this with my husband and talked about it with my doctor.  She tested me for Lyme Disease, and I only tested positive for one out of the five titers, which by CDC standards is considered a negative test.  Thankfully, my doctor understood that standard Lyme tests are not always reliable.  They often show false negatives. In own my research, I discovered that doctors are often unable to treat chronic Lyme Disease as standard antibiotic treatments do not kill the disease.  In fact, many doctors refuse to believe that such a condition such as chronic Lyme Disease even exists.  It has become a very controversial subject in the medical community.  My doctor was very caring and compassionate and seemed to totally understand implications of this disease.  She agreed to prescribe a 21-day dose of doxicyclin, the standard procedure for treating Lyme Disease.  She told me that her hands were otherwise tied.  She was unable to treat me further, and I would need to find someone who could.  She said she could try referring to an infectious disease physician, however most specialists would follow the CDC standard for the disease and would not pursue it further.  She did mention the name of a doctor who specializes in Lyme Disease and also suggested I look into an alternative care practitioner from a neighboring town whom successfully treated another of her patients with the disease.  I knew there was not going to be any easy answers in this.  Then, the path towards complete brokenness began.

SUBMITTING TO BROKENNES

I started the round of antibiotics and soon began herxing as my body could not handle all the toxins released from the dying off bacteria.  I was weak and listless, completely giving in to the disease.  I spent 6 weeks in bed 90 % of the time.  During that time, I lost more than 30 pounds. When trying to walk across the room, I often would loose my balance and fall over.  My legs ached and frequently felt like they would give out when I tried to stand.  The pain spread throughout my entire body. 

My husband, Mel, was working long hours and was not able to be home much.  During the day, I was home alone with my active one-year-old, terrified that something might happen to me and there would not be anyone to supervise him.  I had very little energy and was forced to parent my little guy from my bed.  At noon, I would drag myself out of bed, heat something to eat in the microwave, and we both would sit on my bed and share it.  After lunch, we usually took a nap together.   

Every afternoon, my 6^th grader would walk home from the bus stop, only to turn around and walk another quarter of a mile to pick up her little brother.  Then, I would attempt to drag myself out of bed to try to prepare something for my kids for supper, often feeling too weak to finish.  Many evenings, my daughter had to either cook supper or finish what I started.  My kids frequently set up picnics on my bed so that we could all have supper together.  It was a scary and troubling time for them. 

My husband, Mel, struggled with seeing me suffer and feeling helpless to do anything about it.  Through all of this, he has been very committed to see our family through this.  He had a great deal of responsibility on his shoulders providing for our family, making sure the kids made it to school and their extracurricular activities, and doing all the family shopping.  He often chose to push his feelings aside to keep the household going.

DESPERATE FOR HOPE

I started researching doctors and making phone calls, discovering the difficulty and expense of getting in to see a “Lyme Literate Doctor.” These doctors are often unable to bill insurance for their services and will charge several thousands of dollars for lab fees and other services.  I finally did find a “Lyme Literate Doctor” who would see new patients and wasn't quite as expensive; however, I would still have to wait a few months to get in to see her.  I made the appointment with a feeling that this was not want God wanted for me.  I researched the side affects of the long-term use of IV antibiotics and the damage it does to your body.  It just didn't seem right for me.  I also contacted an alternative care practitioner that my doctor recommended.  His receptionist put me on a one-year waiting list and said she would call me back in a few months to let me know where I was on the waiting list.  It didn't look good. 

I felt like I needed to do something and decided to try treating myself using holistic medicine.  I borrowed a book from a friend who’s family member had self-treated herself for the disease. I got online and ordered several disease-killing supplements recommended by the author of this book.  My symptoms were only worsening, and I was desperate for any kind of hope or healing.  I found out medicating myself without the supervision of a practitioner was a huge mistake for me.  I was having severe adverse reactions to the supplements so I stopped taking them. 

Meanwhile, I was having Parkinson’s-like tremors throughout my body--especially in my hands, mouth, and eyes.  I would lie in bed awake at night, my eyes rapidly twitching and my mouth having tremors.  Lights seemed to make the tremors and vertigo worse, and I could not tolerate much light.  My world was darkness to me.  I started having terrifying episodes in which the room started spinning really fast.  During these episodes, I would have severe brain fog and couldn't concentrate or focus.   Parts of my face would feel numb, my vision would go blurry, and I would have tremors throughout my body.  This brought on a lot of anxiety and fear of having a seizure or dying.  My life seemed out of control. 

At times I felt like I had completely lost hope, and I entertained thoughts that I was probably dying.   I remember calling a mentor from my church, and I told her that I thought I was going to die.  I said that I had given up hope.  She told me, “Let me lend you my hope for a while” and then prayed for me.  I spent sleepless nights clinging to my Bible and reading fragments of Bible verses, desperate for an answer from God that I would survive this winter. 

A BEND IN THE ROAD

Several people had recommended the alternative care practitioner I was on a waiting list to see, stating he has helped many people in our region who have suffered from Lyme Disease and other related illnesses.  As a result of prayer, my husband, Mel, and I both believed that God was confirming that I needed to see this practitioner.  One November day last year, a woman from our church contacted me and said that she had an appointment to see this practitioner for initial testing in a couple of weeks, and God had confirmed for her that she needed to give me her appointment.  I was astounded.  That day, the receptionist called me to scheduled the appointment.  My family and I were extremely relieved that I would have the guidance of a practitioner. God worked it out when everything seemed impossible.  To me it was a miracle.  I will always be grateful to the woman who gave me her appointment.  She has now become a very dear friend.

 When I went in for the testing, my practitioner told me he found multiple complicated issues involving harmful substances in my body, damage from over-use of antibiotics, sensitivity to electromagnetic frequencies, and numerous other health problems.  He told me that the testing would reveal my health problems step by step like peeling an onion.  It would be an extremely lengthy and complex process. My nervous system had significant damage to it, and it would take a long time to undo the damage.  We would start by addressing my sensitivity to electromagnetic frequencies, which would interfere with my treatments if we didn't address them first.  I had to wait more than a month, trying out some new equipment at home before starting my treatments.  Based on the findings of my testing, my practitioner would choose the problems that were causing the biggest damage to my body and work on eliminating those problem areas. I would also be taking treatments that would give my brain, nervous system, and bodily organs the “support” needed to heal.

LEARNING TO WAIT AND TRUST

The most difficult part of starting a new alternative therapy was waiting.  With conventional medicine, you typically go to the doctor, share your symptoms, and the doctor might run some labs or other tests.  Then, the doctor often prescribes a medication that usually has some type of immediate reaction or result to treat certain symptoms.  With alternative therapy, it is a much slower process because the practitioner is most often trying to address the source of the problem instead of the symptoms.  You may also experience what is called a “healing crisis” which means that you have certain adverse symptoms while your body is healing.  The adverse symptoms usually go away over time.  

From the beginning, I put a lot of faith in God and made the decision to trust that He would see me through this.  It was one of the hardest things I had to do, but so worth it.  I started treatments the first of January, however it took a few months of detoxing  chemicals before my body was ready to treat viruses and illnesses. Lyme Disease is often associated with various co-infections. Over time, I had contracted several viruses, bacterial and fungal infections, and other pathogens.  Their symptoms seemed to overlap each other.  As I slowly worked on them, I was able to pinpoint specific symptoms that I was having and understand how the disease or condition affected them.  Just knowing and understanding what was going on had taken a huge load off my shoulders. 

As I slowly worked through the complex layers of my health, I would see bits and pieces of my health come back.  My improvements started out with small things like sleeping better at night, being able to get out of bed during the day, and tolerating natural light.  My husband bought me a cane, which was a huge blessing to me despite my embarrassment with using it in public.  It helped me to get around more, and I was able to go outside without fear of loosing my balance and falling.   

SEEING THE LIGHT

It took many months of treatments and alternative therapy before I really did start noticing significant improvements in my health.  I was thrilled to experience some days without any vertigo at all.  My energy level suddenly started improving, and the pain was slowly getting better.  I was delighted to be able to clean my house!  I was praising while cooking and cleaning!   Working and praising God has been a wonderful feeling!  Over the summer, I went on occasional walks with Mel and the kids, but most often could only make it a short distance.  The day I walked a whole mile was a true day of praise!  I have been truly blessed to see my family and friends rejoice with me.  Finding pleasure in the small things adds a new sweetness to life I've never known before.

BROKEN AND RENEWED

Before my illness, my heart was hard and my relationship with God had become a little dry.  This journey has softened my heart and built up my character through sanctification.  God has demonstrated his love for me through answered prayer, blessings from friends and family, and the love that has been poured out to our family by members of our church. 

There have been several things that have helped me get through this period of winter.  I found spiritual healing through prayer and submitting everything to God by declaring that I am not the one in control.  I finally found the peace I was seeking by merely realizing that there is no true formula for healing.  Early on, I spent quite a few nights, having it out with God, fighting the devil, and crying out in anguish.  I read a few books offering suggested prayers and techniques for freedom and healing, however I started using them as an attempt to manipulate God into doing things my way.  I can say that the prayers and techniques I learned in these books have been helpful for dealing with some of my emotions and strengthening my spiritual walk, but I discovered that I needed to stop trying so hard.  It wasn't until I realized that it was God’s will that I suffer for a while that I finally decided to stop fighting. Then, I really could submit to his will and receive true peace “that surpasses all understanding”.  I started setting aside an hour each day reading God’s word and just talking to him in prayer.  Those times have become very sweet and comforting to me.  My tension and stress has often been released through His presence.  

I have frequent contact my mom who lives far away, and she has always encouraged me to not give up hope.  I have appreciated all the love and support she has given me throughout this season.    My husband has also shown me a vast amount of love and support.   His unconditional love and strength has been a firm foundation in my life.  God has put  a handful of friends in my life who have been committed to pray for me and my family.  I have networked with a couple of ladies in particular have struggled with their own chronic health problems.  We keep in touch with each other on a frequent basis, sharing prayer requests and needs.  I thank God for these wonderful and strong women. 

Recently, God has put it on my heart to be committed to pray for other people who struggle with their health.  I see the overwhelming burden on people’s lives, and my heart aches for them.    I truly feel that somehow God can help me to use my suffering to inspire and help others. 

 I know that my wellness journey is far from over.  Winter may not be completely gone in my life, and I may still have some moments struggling in the wilderness of my heart. In this moment, I am filled with gratitude as I praise God for getting me through this.  By faith and through God’s great love and mercy, I have learned to endure the winter.  Now, I look forward to the promises of spring!

ADDITIONAL RESOURCES

To read more about testimonies of faith during times of tribulation, I recommend reading the book Mercy in the Wilderness by Susan M. Larson.  This book has been a blessing for me. 

https://www.amazon.com/Mercy-Wilderness-Susie-Larson/dp/1553061470

For more information about Lyme Disease, here is a pod cast interview with author, Brandilyn Collins:

http://www.faithradionet.com/?s=Lyme%27s+disease

Here is Brandilyn's website:

http://brandilyncollins.com/lymedisease

This Blog contains more resources and information about Lyme Disease and other Co-infections:

http://www.lymediseaseblog.com/

This is a Documentary about Lyme Disease:

http://underourskin.com/film/

http://underourskin.com/sequel/#sequel-home

Here is a clip from the TV Show, Dr. Phil, based on the Documentary Under Our Skin:

http://www.youtube.com/watch?v=reqyYSAFb9I