(the voices of lyme) The voice of Suffering 2: Coping with Neurological Lyme

"So we do not lose heart.  Though our outer self is wasting away, our inner self is being renewed day by day.  For this light momentary affliction is preparing us for an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen.  For the things that are seen are transient, but the things that are unseen are eternal."  2 Corinthians 4:16-17

COPING WITH NEUROLOGICAL LYME

Chronic neurological Lyme is a debilitating and overwhelming disease to cope with because it affects every part of your life.  I believe that it is essential to educate yourself about what you are dealing with and come up with strategies to manage the disease to the best of your ability.  Everyone has different ways of coping with their circumstances. I came up with a list of suggestions that have helped me to cope with my own daily struggles.


Build a Support Network

If you have or suspect you have Lyme disease, first of all, I want to tell you that you are NOT crazy and it is NOT in your head.  Do not let anyone tell you otherwise.  If your doctor doesn't believe you, refuses to consider the possibilities, or tells you your condition is not real, look at finding a different practitioner.  Ask around and find someone who is compassionate and is willing to really listen to what you are saying.  Never give up finding the treatment strategy that works for you.  There are several options available for conventional, alternative, and combined therapies.

Secondly, know that you are not alone. Although you may not find tangible access to support groups and resources for people with chronic Lyme, there is support out there.  You could start by contacting a local Lyme organization to get more information or seek out online groups for support.   With online resources and social media, we have easier access to finding people who share our experiences with chronic disease.  It has been very important for me to build a support network of people who accept me and share similar struggles so that we can support each other through the hard times and rejoice together with our triumphs.  Having someone to lean on and walk this journey with you makes a huge difference.   Additionally, do not be afraid to ask for help.  If you attend or belong to a church, it is a great place to receive support and assistance when you need it.  Something as simple as a phone call, prayer support, or a meal can lift the burden on your heart when you realize that someone cares about you.  I am very thankful and blessed for the support of the body of Christ who has come alongside me and my family through the years.

Plan Ahead

When you are struggling with chronic conditions such as Lyme, you may be overwhelmed by the pain, weakness, and neurological problems that have disrupted your daily life.  Medications, supplements, and other therapies can take up a lot of your time and be overwhelming as well.  Your stress level escalates when you are just trying to make it through the day.

Having a consistent daily routine and planning ahead will reduce the stress in your daily life and keep you occupied so that you aren't overly focused on your situation.  Start out by making small goals for each day.  If you are having difficulty keeping up with housework and daily tasks, talk it over with your family to come up with a plan.  Those who are married and have children can ask their spouse to help come up with a chore plan or list for everyone to contribute to keeping up on basic household duties.  I find making "to do" lists and designating certain days for specific tasks helps me to stay on top of my housework.  I will sometimes make lists for my kids so that they know what is expected of them and they can help out with chores.

If you are taking a lot of medications, supplements, or doing several therapies you can make out a schedule and use pill boxes to keep everything straight.  Planning ahead is also excellent way ease the stress when traveling, celebrating holidays, and going on outings.   In these situations, you can put together a list of what you will need to cope with your situation while away from home, figure out what medications or treatments you will need to take with you, and prepare foods in advance for your specialized diet.  Planning ahead will make things run smoother when you are at home and out in public.

Write it Down

Keeping a journal is a great way to express your feelings and cope with your daily struggles.  When you chronicle your journey and what lessons you have learned from your suffering, you will look back and realize how far you have come.  I find that by using a journal and writing things down, I feel a release in my spirit and it helps me to get through the day. I also make it a daily habit to focus on the positive aspects of my life by listing what I am thankful for.  No matter what obstacles we face, there is always something we can be thankful for.  An attitude of gratitude is not always easy but it helps us to refocus our minds on momentary joys.

Dietary and Environmental Changes

Changing your diet and the environment around you can help improve the inflammation in your body and reduce some of the symptoms/triggers you are experiencing.  You can research recommended dietary strategies on your own or consult with a nutritionist or practitioner that specializes in Lyme.   You may notice that when you change your diet by eliminating certain foods, you will have temporary side effects as your body adjusts to the changes.  Strategies for improving your home environment can include reducing the amount of chemicals you use, eliminating fragrances, reducing EMF (electromagnetic frequency) exposure, changing your household lighting, and removing any potential mold or other possible health hazards.  When you are struggling with conditions such as Lyme and have EMF sensitivity, it is recommended that you remove wireless internet or WiFi from the home and replace it with a computer modem.  If you have no other option, you can shut off the WiFi when you are not using it.  I would especially recommend doing this at night when you are sleeping. Some people unplug their microwave or get rid of it in order to reduce exposure to radiation and EMF's.  We have tried a few recommended strategies to reduce the EMF's in our house.  After discovering our cordless phones were carrying strong frequencies throughout our house, we eliminated them all together.   We replaced our fluorescent lights with traditional bulbs because fluorescent lights are brighter and emit stronger frequencies.  I dim the lights on days when my sensitivity is more prevalent.  Table lamps can be useful in minimizing the brightness in the home environment.

Create a Place of Refuge

It is crucial to have a place of refuge to go to when you are struggling with neurological Lyme and related conditions.  This should be a peaceful place to get away from the noise and chaos so that you can take time to rest and recover.  The place of refuge should be a quiet, safe, and comfortable environment that has appropriate lighting for light sensitivity.

I have two places of refuge at home.  One is my bedroom.   I have it set up a serene environment for relaxation and recovery.  We have removed all electronic devices such as TV's and computers for a more peaceful atmosphere.  I keep our radio/CD player, lamp, and alarm clock away from my side of the bed to reduce frequencies where I rest.  I also use specific devices in my bedroom for EMF sensitivity. My second refuge is outside in the garden.  In the summertime, I try to spend at least an hour a day grounding outdoors.  I do this by removing my shoes when gardening and sitting/laying in my yard.  There is something about the earth's magnetic field that has a healing power on the body and also reduces the harmful effects of EMF's.  I have found natural grounding to be much more effective than any devices.  When you are spending time outside, you have an increased risk of exposure to ticks and disease; however, I am willing to take that risk because of the enjoyment I experience as well as the health benefits of being outside.

Live in the Moment

Chronic and neurological Lyme is a challenging disease to manage.  It is way too overwhelming to think about the future and worry over all the "what if's."  In order to cope with your daily struggles, you must take everything a day and sometimes a moment at a time.  I am very grateful to be on the other side of the most debilitating aspects of battling my condition; however, when I come down with a virus or am doing a specific treatment/detox, some of the old symptoms will come back.  Although I may become upset about temporary setbacks, I take a deep breath and remind myself that I've been through this before and will make it through again.  Then, I rest in the knowledge that God is with me and will take care of me through this difficult moment.  I focus on God's mercies that are new each day and tell myself tomorrow will be different.  If not, God will be by my side to get through the next day as well.

Trust God in the Hard Stuff

"I waited patiently for the Lord to help me, and he turned to me and heard my cry.  He lifted me out of the pit of despair, out of the mud and mire.  He set my feet on solid ground and steadied me as I walked along.  He has given me a new song to sing, a hymn of praise to our God.  Many will see what he has done and be amazed.  They will put their trust in the Lord."  Psalm 40:1-3

When you are facing a seemingly impossible situation where your world crumbles and your body breaks down, you may come to a point where you are at the end of yourself.  You then have the option of falling into the pit of despair or clinging to the one constant in your life, the Rock of Salvation and Hope.  As everything else fades away, God and your faith may be all that is left.  Remember that His love is real, His promises are real, and He will never fail you or forsake you.  You might be angry with God and think to yourself how could a loving God let this happen?  Tell Him how you feel.  Tell Him you are angry, hurt, and in despair.  Tell Him you don't understand why you are suffering.  He already knows how you feel, and He still loves you.  He has been down the road of suffering, pain, and loneliness.  He did it for you.  He knows more than anyone what it is like to suffer the unthinkable and to be alone.  He wants you to dive into His loving arms, cry out to Him, and tell Him you can't do it on your own.  God may seem to be doing things backwards, but he is in the business to lift up the broken and weak so that He can shine in their lives despite their tribulation.  Take a deep breath and jump into the beautifully terrifying sea of faith. The loving arms of a God bigger than all of this will catch you and lift you up.   He is waiting to show you that He loves you no matter what your circumstances are.

The path of physical and emotional healing involves spiritual renewal and forgiveness.  Our mental attitude has a tremendous impact on our physical wellbeing and overall healing.  When we are hurting deeply, it may seem impossible to change our attitude, but with faith and the help of our loving Creator, we can do it.  God can take these ugly circumstances and build something new and painfully beautiful out of it.   You will take a tremendous step in this process by choosing to forgive.  Forgive those who hurt you and those who didn't understand.  Forgive the medical professional that misdiagnosed you and was insensitive to your pain.  Forgive yourself.  Most of all, forgive God for seemingly letting you down and allowing this to happen.  When I decided to choose forgiveness over anger and hurt, it was difficult for me but I gritted my teeth and took a step of faith.  I reached for the miraculous gift, the freedom of forgiveness only found in the grace of God.  I believe that forgiveness in itself has tremendous healing power.  Learn to forgive, to let go, and trust God in the hard stuff.

FINDING HOPE

Although my condition has improved through the years, I had to come to terms with the fact that I may never fully recover this side of heaven.  God only knows what my future holds.  I have found that He has used my circumstances to speak to others, and I will do whatever I can to make the best of all that God has given me.  It is my desire to do His work through my joy and through my suffering.   At the same time, I will never give up hope for full healing and recovery.  If it is God's will, I will just praise Him all the more for restoring my life and healing my body.

Whether you have neurological Lyme, a mysterious condition, or an untreatable illness--no matter how bleak things look or what your circumstances are, don't give up hope.  Hope is what makes each day worth waking up to and each breath worth living for.  Rest in God's love for you.  Trust in His promises and His hope.  He may not give guarantees for what we want but His promises are true, and they are worth clinging to and living for.

"We also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.  And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us."  Romans 5:3-5

This the 2nd part of an article on Neurological Lyme for my "Voices of Lyme" series.  For more information about Neurological Lyme and its impact, check out my 1st article here:  http://dzehm.blogspot.com/2015/03/the-voices-of-lyme-voice-of-suffering.html?spref=fb

RESOURCES

The information in this article is not intended to be expert advice or offer diagnoses/treatment for Lyme disease.  It is based on my personal experience and the experiences of others I know.

For more information about chronic Lyme, my testimony, and the testimony of others, you can read these blog articles:

About Chronic Lyme:  http://dzehm.blogspot.com/2012/12/chronic-lyme-disease.html

My Story:      http://dzehm.blogspot.com/2012/11/enduring-winter-my-battle-with-lyme.html

Nancy's Story:  http://dzehm.blogspot.com/2014/10/the-voices-of-lyme-voice-of-hope-nancys.html

Logan's Story:  http://dzehm.blogspot.com/2014/12/the-voices-of-lyme-voice-of-youth.html

Sally's Story:  http://dzehm.blogspot.com/2015/02/the-voices-of-lyme-voice-of-battle.html

Judy's Story:  http://lymedisease.org/news/touchedbylyme/lyme-fog-wall.html

Maggie's Story:  http://www.burlingtoncountytimes.com/life-style/reality/living-with-lyme-disease/article_f7b435cd-8471-51e5-8bf2-27a3da1943ad.html

Celebrity, Yolanda Foster:  http://lymedisease.org/news/touchedbylyme/lyme-fog-wall.html

For more information about help and support for chronic Lyme, visit ILADS website:  

ILAds.org

For more information about Lyme disease and treatment information:

http://articles.mercola.com/sites/articles/archive/2013/09/04/lyme-disease.aspx

This article shares treatment strategies for Lyme as well as information regarding EMF's and the healing process:

http://articles.mercola.com/sites/articles/archive/2012/02/05/dr-dietrich-klinghardt-on-lyme-disease.aspx

This article describes how impairment of methylation, a detoxification pathway, contributes to the recovery of Lyme and other chronic conditions that are difficult to treat:

http://suzycohen.com/articles/methylation-problems/

The movie, Under our Skin, profiles chronic and neurological Lyme.  This documentary has helped to raise awareness about this disease.  Here is the link to watch it online:

http://underourskin.com/film/

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

(the voices of lyme) The voice of Suffering 1: Neurological Lyme

"For I consider the sufferings of the present time are not worth comparing with the glory that is to be revealed to us."  Romans 8:18

THE VOICE OF SUFFERING

It feels like you are entering into a never-ending nightmare as you find yourself in a mental fog and something isn't right with your body.  You try to put on your best smile and tell yourself to just ignore what is happening to you and it will eventually go away.  As time goes by, simple functions such as walking and standing become more difficult.  You try to be casual about leaning against a table or a doorway in an attempt to hide your mysterious impairment.  Your doctor is baffled by your weakness, excruciating pain, and unusual array of neurological symptoms.  Your MRI and other tests are normal, and no one seems to have any definitive answers as to what is causing your diminishing health.  You wonder if you are going crazy.  As this mysterious condition takes hold of your life, your hope fades and you have no idea where to turn for help.

This scenario describes the voice of suffering--what someone could be experiencing with undiagnosed neurological Lyme.


SYMPTOMS OF NEUROLOGICAL LYME

Chronic neurological Lyme has recently become a hot topic as Lyme advocates and organizations such as ILADS are working towards raising awareness about the disease and improving diagnostic guidelines.  Pain, weakness, and flu-like symptoms are commonly associated with Lyme disease.  Those who have the erythema migrans rash or other obvious symptoms of the disease are often able to find immediate treatment without major complications; however, there is a whole other group of people who do not have obvious Lyme symptoms and suffer silently from chronic and/or neurological Lyme.  These individuals' unique conditions have not typically been made known to the general public.

Over the past few years, I have talked to a handful of people who have been diagnosed with or suspect that they have Lyme disease.  Through their experiences, I have learned about a vast array of Lyme symptoms that vary from person to person.  I am not sure why some seem to respond fairly quickly to treatment, while others do not recover and their symptoms worsen with antibiotics and other Lyme therapies.  I am not a doctor or an expert on Lyme; however, I have struggled with Lyme symptoms for several years.  The information in this article is not intended to be expert advice or offer diagnoses/treatment for Lyme disease.  The information I am sharing is based on my personal experience and the experiences of others I know.

It is Not Just About Lyme

Although Lyme disease can cause cognitive impairment, in my own experience Lyme is not necessarily the primary cause of the neurological problems associated with the disease.  Lyme can be a catalyst for other issues in the brain and body.  Here are some other factors that may contribute to neurological problems associated with Lyme disease.  Each individual situation will vary.

Lyme Co-infections, Parasites, and other Pathogens:  Lyme can be accompanied by other co-infections, pathogens, and parasites.  The symptoms of these pathogens may overlap each other, and they can cause both physical and neurological problems.  When I was being treated for Lyme, I was also being treated for various Lyme co-infections and other conditions including West Nile Virus, Epstein-Barr Virus, and a few different parasites.

Candida:  Candida, an imbalance of yeast, can cause neurological problems for individuals with Lyme.  Antibiotic therapy is the standard treatment for Lyme disease, and antibiotics will destroy the "good" bacteria that keep the yeast under control.  Candida carries potentially harmful substances that may enter the body when the yeast dies off.  A few years ago, my practitioner discovered traces of acetaldehyde in my system that was perceived to be a reaction between the candida and sugar in my body.  Acetaldehyde is a chemical released into the body when consuming large amounts of alcohol.  At that time, I was having severe episodes of brain fog, blurred vision, and vertigo that exacerbated with an empty stomach.  I do not drink alcoholic beverages, and my candida imbalance apparently contributed to these episodes.

Heavy Metals in the Body:  Mercury and other metals can be significant sources of neurological problems for the individual with Lyme.   I have found that parasites and pathogens such as Lyme can carry mercury and other metals that are potentially released when they die off.    Metal sensitivity has been a substantial barrier to my healing.   I have had several issues involving sensitivity to the metal in my dental filings and implants.  About a year ago, I had all of my dental amalgams safely removed and then went through several months of mercury detoxes.  The side effects of the mercury in my system led to further impairment of my balance and mobility that occurred intermittently during the detoxification process.  My dentist has recently removed all of my dental metal, and I am looking forward to the healing benefits from this process.

History of Head Injuries:  Individuals with a history of a concussion or head injury may have a higher risk of neurological symptoms associated with conditions such as Lyme.  As a child, I fell headfirst off of a swing set and unknowingly sustained a head and neck injury.  Although I was unaware of the full impact of this injury, I can recall specific changes in my body from that incident.  When I came down with Lyme disease, symptoms related to this injury contributed to my chronic vertigo and related issues.

Bizarre Sensations in the Body

Bizarre bodily sensations associated with Lyme and related disorders can be very upsetting, especially when you do not understand what is happening or why.  Here are some symptoms that I have experienced and/or have been described by others who suffer from neurological Lyme.

Numbness/Tingling:  Numbness, tingling, and facial paralysis (Bell's palsy) are some of the more common symptoms of Lyme. Individuals may experience numbness and/or tingling in specific locations such as arms, hands/fingers, legs, feet/toes, etc.  The numbness sometimes will relocate on the body.  I have experienced facial numbness around my mouth and eyes as well as occasional numbness in my fingertips and toes. I have also had a numbing sensation crawling across my head that felt like goose bumps or similar to when a part of your body "falls asleep."  When experiencing numbness, the sensation may not be of complete numbness but more like when you are coming off of Novocaine after receiving dental work.

Involuntary Muscle Movements/Tremors:   Some individuals with Lyme struggle with muscle tremors and twitching in their eyes.  When I was first being treated for Lyme, I experienced involuntary muscle movements and tremors that were all over my body, and I was concerned that I might have Parkinson's.  I have also had unusual twitching sensations that felt like a rubber ball was bouncing in my head.  I called the sensation "bouncy brain."

Pain and Bizarre Sensations in Extremities:  Sometimes people have described pain and bizarre sensations in their arms/hands and legs/feet.  The pain can be extreme and feel like someone is stabbing their hands or feet with shards of glass.  Extremities may also feel heavy and clumsy when attempting to walk or do certain tasks.  It may seem as though the brain isn't communicating properly with other parts of the body causing difficulty with mobility and use of hands.

Vertigo/Loss of Balance:   Chronic vertigo and problems with balance have been my greatest challenge in my battle with Lyme.  Vertigo is the feeling that you are moving/spinning or the environment around you is moving/spinning even though you are stationary.  I have often felt as though I have come off of a fair ride, and I sometimes will momentarily lose my bearing.  The floor has felt crooked or like it was swinging back and forth when I attempted to walk.  In extreme situations, I would fall and be unable to walk more than a few feet.  These severe episodes of vertigo/balance problems appeared to be associated with specific treatments or metal detoxification.  They have usually lasted for short periods of time and have improved after rest.  

Brain Fog and Cognitive Changes

Lyme disease and other related conditions can impair the function of the brain.  I have heard testimonials of neurological Lyme patients finding it extremely difficult to process information.  Some have described their cognitive issues as though something was seizing their brain.  I have been fortunate that I have not experienced any memory loss, and I have had minimal cognitive issues during my battle with Lyme disease.

Short-term Memory Loss/Difficulty Focusing: Individuals with Lyme can experience memory loss at varying levels.  The cognitive impairment may simply be forgetfulness and difficulty recalling a fact or remembering a name.  In more extreme cases, individuals may experience short-term memory loss and inability to recall familiar words.  Difficulty concentrating and focusing is also common with Lyme disease.  Some find reading a book or watching a movie a daunting task because of their inability to concentrate on what is in front of them.  These cognitive changes are often intermittent and they come and go.

Brain Fog/Visual Disturbances:  Brain fog is also a common symptom of Lyme and other related conditions.  When having brain fog, you feel like you are in a mental fog with fuzzy thinking.  Episodes of brain fog are usually sporadic. When I have experienced brain fog, I also noticed that my vision was cloudy and things around me seemed unreal.   My brain fog was often associated with, candida imbalance, treatments for Lyme and other pathogens, and issues involving exposure to metal in my body.  With these episodes, I found that eating foods high in protein, drinking fluids, and getting some rest/sleep would usually alleviate the brain fog.


Unusual Sensitivities

Neurological Lyme and other related conditions can often lead to increased sensitivity and allergies to food, chemicals, fragrances, and multiple stimuli.  This is very frustrating for the person struggling with Lyme and is difficult for others to understand how these sensitivities affect the person's quality of life.  The individual with Lyme may experience chronic pain and headaches which can cause them to be extremely sensitive to physical touch and other stimuli that are common headache triggers.  Recently, I have read information on how damage to the hypothalamus from Lyme neurotoxins causes the brain's lymbic system to become hypervigilant and treat external stimuli as a threat thus causing extreme sensitivities to certain foods and environmental triggers.  These are some of the sensitivities that individuals with Lyme and other chronic conditions experience.

Food Allergies:  Food allergies/sensitivities may emerge with chronic and neurological Lyme, especially if the individual is struggling with a candida imbalance.  Lyme thrives on certain foods such as sugar and carbohydrates.  Lyme literate doctors and other practitioners may recommend a specialized diet, eliminating gluten, refined sugar, and dairy. When on a specialized diet, you may also need to take certain supplements for nutritional balance and healing.   I have tested for several food allergies and have an unusually high sensitivity to gluten, sugar, and processed foods.  My practitioner has worked with me on a specialized diet for my specific sensitivities and nutritional needs.

Sensitivity to Light, Sound, and Movement:  Sensitivity to light, sound, and movement is also a common struggle with chronic and neurological Lyme.  Sometimes the brain can only handle so much stimuli before it becomes overloaded.  This will make shopping, public activities, concerts, and other situations involving crowds daunting for the individual.   I have significant light sensitivity and often wear sunglasses to decrease light exposure.  Some people wear specialized sunglasses, hats, or sun visors to minimize exposure to light.  Ear plugs may also be beneficial for reducing exposure to loud sounds.

Chemical and Fragrance Sensitivities:  Multiple chemical and fragrance sensitivities is a frustrating issue for individuals struggling with chronic diseases such as Lyme.   Common chemical sensitivities include perfume, air freshener, fabric softener, cleaning supplies, bleach, gasoline, paint fumes, and VOCs.  These chemicals and fragrances can trigger migraine headaches, vertigo, breathing difficulty, and other adverse reactions.  I make it a habit to carry Kleenex with me to discretely use in situations where I am exposed to chemicals and fragrances.  Some people also use essential oils to offset the adverse effects of fragrances and fumes from chemicals; however, individuals can have allergies to these oils as well.  Certain essential oils may trigger symptoms.

Electromagnetic Frequencies:  Sensitivity to electromagnetic frequencies or EMF's is a topic that is emerging in recent years due to increased use of cell phones, wireless internet, and other electronic devices.  EMF sensitivity has been a significant struggle for me.  I have recently read a few articles that express concern that EMF's will inhibit the healing process of patients with chronic Lyme and other related conditions.  There is no known way to completely eliminate electromagnetic frequencies in the environment; however, there are several products available for people to try.  The products are designed to help individuals cope with the EMF sensitivities with a goal to create an environment conducive for them to heal despite the presence of EMF's.  I have heard of some debate about the usefulness of these products and if they truly work.  In my experience, some of them are more helpful and work better than others.

Disrupted Sleep Patterns

Insomnia is also a common problem with chronic Lyme.  Pain, unusual symptoms, and bizarre sensations in the brain and body can emerge at night when lying in bed.  Early on, I struggled with inability to sleep.  My insomnia was very challenging for me to deal with as I battled pain, vertigo, twitching in my eyes, and tremors throughout my body.  Some people have described being kept awake by a song or phrase blaring in their mind over and over, and they are unable to shut it out.   Nighttime insomnia can lead to excessive worry, anxiety, and depression especially when the person with Lyme is unaware of what is causing their symptoms.  After my practitioner advised me on making environmental changes in my bedroom, I have no longer struggled with insomnia, and I have a new appreciation for sleep, a wonderfully healing activity.

Decreased Ability to Handle Stress

Chronic and neurological Lyme is often physically and emotionally debilitating for the individual and impacts all aspects of life.  Chronic pain, candida imbalance, hormone and adrenal imbalances, nerve damage, and cognitive issues are just a few of the many emotional triggers that are compounding the person's daily life and diminishing the individual's ability to handle stress.  Someone who is experiencing these struggles will naturally feel anxious and/or depressed, especially when the person is unaware of the causal factors for their symptoms.  Just about every individual I interviewed reported that a medical practitioner suggested they be treated for depression, anxiety, or other psychosomatic disorders prior to their Lyme diagnosis. The emotional side of this complex disease is very real and should be brought into consideration in the big picture; however, emotional issues should not be determined as the primary source of the problem.  I found significant emotional relief in knowing and understanding the cause of my unique condition.  As long as I understand what I'm dealing with, I can learn to cope with the emotional side of it.  In some circumstances, emotional interventions may be necessary for the person to manage their situation.  Each individual circumstance is different.

Loneliness, Withdrawal, and Isolation

Debilitating conditions such as chronic neurological Lyme also can lead to loneliness, withdrawal, and isolation.  The vast array of symptoms and sensitivities associated with the disease are very overwhelming for individuals to cope with.  Friends and family may not understand the full scope of the struggles going on.  Some will criticize the person and tell them to "suck it up" or "get over it."  Many do care and are well-meaning in their intentions; however, they are unaware and unsure what to do or how to help.  People are also extremely busy with their own lives and may not have time to engage with or help the person.  Individuals with Lyme are sometimes physically unable to get out of the house and are isolated from others.  They may be unable to participate in activities they used to enjoy with their friends and lose connection with their previous social network.

 Holidays and events with family have been the most difficult for me, especially when I have missed out on special occasions with the people I love.  For any traveling or special events, I need to plan ahead for my meals so that I am on top of my specialized diet.  I also prepare myself to address potential chemical, fragrance, light, and other sensitivities.  I prefer not to draw attention to myself in these situations. I will also worry that my host might be offended if I am unable to eat the meal they have prepared or if I am experiencing a specific sensitivity in their home.  I have sometimes sensed the discomfort of others around me. I know that they do not know what to say to me, and I make it a point not to take it personally.

HELP AND HOPE

"Bless the Lord, O my soul, and forget not all his benefits, who forgives all your iniquity, who heals all your diseases, who redeems your life from the pit, who crowns you with steadfast love and mercy."  Psalm 103:2-4

Chronic neurological Lyme is a debilitating and overwhelming disease to cope with because it affects every part of your life.  I believe that it is essential to educate yourself about what you are dealing with and come up with strategies to manage the disease to the best of your ability.  Whether you have neurological Lyme, a mysterious condition, or an untreatable illness--no matter how bleak things look or what your circumstances are, don't give up hope.

For more information on coping strategies and hope in times of suffering, check out the 2nd part of my article on Neurological Lyme here: http://dzehm.blogspot.com/2015/03/the-voices-of-lyme-voice-of-suffering-2.html

 RESOURCES


For more information about chronic Lyme, my testimony, and the testimony of others, you can read these blog articles:

About Chronic Lyme:  http://dzehm.blogspot.com/2012/12/chronic-lyme-disease.html

My Story:      http://dzehm.blogspot.com/2012/11/enduring-winter-my-battle-with-lyme.html

Nancy's Story:  http://dzehm.blogspot.com/2014/10/the-voices-of-lyme-voice-of-hope-nancys.html

Logan's Story:  http://dzehm.blogspot.com/2014/12/the-voices-of-lyme-voice-of-youth.html

Sally's Story:  http://dzehm.blogspot.com/2015/02/the-voices-of-lyme-voice-of-battle.html

Judy's Story:  http://lymedisease.org/news/touchedbylyme/lyme-fog-wall.html

Maggie's Story:  http://www.burlingtoncountytimes.com/life-style/reality/living-with-lyme-disease/article_f7b435cd-8471-51e5-8bf2-27a3da1943ad.html

Celebrity, Yolanda Foster:  http://lymedisease.org/news/touchedbylyme/lyme-fog-wall.html

For more information about help and support for chronic Lyme, visit ILADS website:  

ILAds.org

For more information about Lyme disease and treatment information:

http://articles.mercola.com/sites/articles/archive/2013/09/04/lyme-disease.aspx

This article shares treatment strategies for Lyme as well as information regarding EMF's and the healing process:

http://articles.mercola.com/sites/articles/archive/2012/02/05/dr-dietrich-klinghardt-on-lyme-disease.aspx

This article describes how impairment of methylation, a detoxification pathway, contributes to the recovery of Lyme and other chronic conditions that are difficult to treat:

http://suzycohen.com/articles/methylation-problems/

The movie, Under our Skin, profiles chronic and neurological Lyme.  This documentary has helped to raise awareness about this disease.  Here is the link to watch it online:

http://underourskin.com/film/

http://underourskin.com/sequel/