(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/