MIA, The Lyme Story
This story is about a devastating disease and the journey it took me on that changed my life forever.
I have been MIA for almost four years, imprisoned by a Multiple-Systemic Disease called Lyme, and this is how it began-
Going back in time, to my last day of good health… I went to bed with severe head pain. Not ever having migraines, I thought, maybe it was a migraine. The head pain intensified by morning. I begin to have terrible body pain I was hardly able to move. I was experiencing an electrocution feeling throughout my body. My eyesight became blurred. I laid in pain, thinking that maybe this was a strange flu. As the day went on, I started having difficulty breathing, and no feeling on my left side. By midday, I was convinced a trip to the ER was necessary. This would be the first out of several trips to the dreaded hospital, a place I have always tried to avoid. No need for details, nothing was resolved with this trip to the ER. Just an adverse effect with morphine, a set of tests, and medical incompetence at its finest.
As the days went on, my symptoms became worse. I was very lethargic and losing the ability to communicate. My lower extremities would not function, causing an inability to walk. Passing out from so much pain. Random seizures and tremors. Heart palpitations with chest pain. Different areas of my body would turn blue. Bazaar rashes would appear throughout my skin, then disappear and reappear. Crawling sensations throughout my body as streaks would show up on my skin. Low grade temperatures following high fevers, inconsistent blood pressure. Excessive weight loss. I was actually deteriorating.
Then came the weeks with no recollection of my life. I did not know myself, or where I was. I would look into the mirror and visualize a reflection of someone I did not know. I would look into my husband’s eyes and ask him who he was. My surroundings were no longer familiar to me. I was a stranger to myself, lying in a bed I did not recognize. Not understanding who I was and why I was in so much pain. Being very scared and confused comes back to me in frightening nightmares.
The first eight months were not just painful and confusing, they were terrifying! Not only for me, but for those around me. My husband led me from doctor to doctor. I went back to the hospital on several occasions and was seen by:
•4 different highly rated Neurologists
•3 internal Internal Medicine Physicians
•1 infectious Infectious Disease Doctor
•2 highly rated Cardiologists
•2 Hematologists
•1 Oncologist
•1 Optometrist
•2 Ophthalmologists
•3 highly rated Neuro-ophthalmologist
•1 AAEM
•1 Obstetrician
And one Infectious disease doctor had the nerve to say “it is stress, go on a vacation”.
During these dreadful visits, and eight months of back-and-forth the following tests were run:
•MRI (s)
•CT (s)
•CT-Myelogram
•MRA (s)
•MRV
•Ultrasound (s)
•PET
•EEG (s)
•EKG (s)
•ECG
•Table Tilt
•Biofeedback
•Elisa test
•Western Blot test
•HIV test
•Excessive amounts of blood work
I was told I needed to check into the hospital for migraine treatments, two weeks of adding chemicals to my brain. Looking back, thank God that didn’t happen knowing what I now know.
Over an eight month timeframe I was diagnosed with, or was lead to believe that I had the following diseases/disorders:
•Migraines
•Meningitis
•Dementia
•Multiple Sclerosis
•Lupus
•Optic Neuritis
•Fibromyalgia
•Reiter System
•Peripheral Neuropathy
•Cerebral Vasonstriction
•Spontaneous Inter-cranial Hypotension
•Multilevel Degenerative Disease
•Chronic Fatigue Syndrome
•Anxiety
•Electromagnetic Hypersensitivity
•B 12 deficiency
•Vitamin D deficiency
I became a medical lab rat, due to all of the medical uncertainty, with self-righteous doctors misdiagnosing and prescribing an unbelievable quantity of pharmaceuticals that were being passed out like Halloween candy.
I truly had no idea, most of the time, where I was or what was going on. The pain was indescribable, with no relief. A considerable amount of medication was being fed to me, causing more symptoms, more seizures, and convulsions. At one point, I was temporarily paralyzed for three days. Even seizure medication wouldn’t help the seizures, and migraine medication made my head pain worse.
The only relief that would somewhat help was bags of ice for my head and body to numb the pain. This would require hammering ice blocks to make several large bags of ice throughout the day.
One of the many doctors ran a food allergy test with results showing I was allergic to gluten, nightshades, dairy, oats and nuts. That’s nuts, I never had those allergies, I could eat anything. I was also advised to remove sugar and eat low carbohydrate meals. Everything had to be cooked. I was put on a “special diet” causing a huge inconvenience, as these meals took three hours to prepare.
In addition to food allergies, I became chemically sensitive as well. There was a gigantic change in our household; laundry detergent, bathing soap, dish soap, cleaning products and shampoo. A long list of ingredients I could no longer use or eat and if I did, neurological repercussions would be my issue.
You cannot have a long-term illness and not expect financial chaos. It is impossible to presume that your daily living expenses will remain the same. For example; paying thousands in “out of pocket” expenses with an adequate insurance company, became routine. Insurance helped very little, medical bills were pilling up, pharmaceutical expenses were outrageous, and bills were tripling. My husband really needed to make up for the financial loss. He had a lucrative job, but it wasn’t enough to sustain the high cost of a chronic illness.
We did not know that I would soon be diagnosed with a financially life changing disease… A study came out regarding the cost of treating Lyme Disease $1.3 billion dollars a year. Insurance companies are not required to cover the costs related to Lyme disease. Patients spend on average $53,000 per year out-of-pocket for tests, doctor visits, pharmaceuticals, and supplements. That’s around $4,416.00 a month. This does not include special diets and lifestyle changes within the household. Imagine spending an excessive amount of money yearly and you are not cured. But you do it to stay alive.
Family helped a bit financially and every amount given was always appreciated. Household items and personal belongings were being sold, and the thought of a second job was on my husbands mind, but the job he already had required a lot of time and effort. I required a lot of time and effort.
As if life couldn’t get any more difficult; my son was battling health issues, his story to tell, but I will say he underwent a serious spinal surgery. He, too, was in much need of care and treatment. My husband was there for him, and my father came to babysit me during the surgery. Recovery took time for my son; his story to tell.
The caregiving husband was on a solo mission to get a correct diagnosis, take care of a seriously ill and helpless bedridden wife, while working a full time job and helping his son recover. I could only hope that my spouse had enough patience and compassion for what our family was going through. He had stress and burnout, due to no help or reinforcement, at times causing resentment and anger.
I’m not sure if most people realize what it takes to care for the chronically ill, full time; what it entails, and the toll it takes on both individuals. But for those that do understand, God bless you. I was like taking care of a very ill infant, or a sick and helpless elderly person with absolutely no help. Now imagine doing this for months, years, or indefinitely.
Insurance denied a caregiver several times. My husbands lucrative job came to an end with the explanation of “you are spending too much time taking care of your sick wife.”
So often the same questions would be asked, “Where is your family? Why are they not here helping”? I suppose you could say that they went MIA, too. It was very hard to comprehend the lack of physical help received, even more difficult to hear their excuses, but to be pointed out by strangers, the medical community, neighbors and friends, how embarrassing.
In the beginning, my mother was the first to arrive. She attended doctor’s appointments and provided me with much comfort. Her visit lasted for less than a week and sadly, she’s never returned throughout the years despite how many times her presence was requested. It is truly heartbreaking to feel deserted during a time of need and although I love my mother and forgive her the hurt will remain forever.
If you are a parent with a sick child, even a grown adult child and you are reading my story I cannot stress enough the healing of your child will not take place if they are asking for you and you cannot meet the request. If you are reading my story and you are the sick child in need of your parent in whatever way, whether it be to sit with you and lend emotional support, to hold your hand through pain, or to pray with you by your bedside, and your parent is not willing to part the seas for you and a life threatening illnesses please ask for psychological help. By not doing so, your health is in jeopardy.
My husband’s family went completely MIA . He would hear their voices on the phone, but nothing on sight, only excuses. They would speak about trips and visiting other relatives, which hurt his feelings and created bitterness towards them. He, too, felt deserted during a time of need. It is terribly sad that they looked the other way for years when he was stretched way too thin and suffered deeply in silence.
My father and step mother came on a regular basis, in the beginning. They stuck around the longest and were more involved.
Now don’t get me wrong; there were a lot of inquiries, concerns, and suggestions. My step father set up a ‘Go Fund Me’ page. My step brother in Afghanistan bought a detoxification machine the very day he found out I was sick. Cards and gifts arrived that were very thoughtful. Our family prayed and wished us well. A lot of family members would tell us, “I’m praying for you” and I will always be grateful they took the time to pray for our devastating situation. I am a believer in the power of prayer.
If only they all prayed for themselves to have the courage to come help.
It is difficult to comprehend the lack of initiative taken with some of our family members. While I lay in bed, fighting for my life, relying on one person that was in need of physical relief, the scarcity of family members and their inability to take charge and form a relief effort for my husband, and a support team for myself will forever be a scar.
My disease was not going to wait for help to arrive. No way was it slowing down: it was now becoming worse than ever with less supervision. My husband started his own company picking up contract work having even more demands than before. I had a lot of casualties which came with a lack of supervision. Seizures would leave me in a pile of broken glass, laying on the floor unable to move. One seizure caused a broken arm, another dislocated a shoulder. I was incoherent, but felt the additional pain which I did not understand. It took two days until my broken arm was discovered. The screaming from pain was just a normal day so a broken arm went unnoticed. My pain of a broken arm and a dislocated shoulder could not be relieved with pain pills on either occasion, due to the allergic reactions which I now had when taking brain altering pharmaceuticals.
My husband would clean me up, fix my mess, feed me, bathe me, and look into my eyes hoping to see a part of me he once knew. But I was no longer there. It was the disease he was looking at. A disease he despised. “I hate this, I’m sick of this” he would say. Some days I believed he hated me and was sick of me.
He continued the search to find a doctor that would diagnose me correctly. He continued being a caregiver. He was now impatient and was having emotionally difficult times watching his wife suffer, having his family abandon him, and receiving no help on site.
As my disease progressed, I became more difficult to handle. I began to have hallucinations, raging fits, and attempted suicide on many occasions. I wouldn’t normally think of suicide, but apparently when I would go into a neurological tail spin, having seizures and passing out from pain, I would wake up hallucinating and somehow find ways to “off” myself. I promise to those reading this, suicide is something I would never have ever contemplated doing. I have a son, and I could not bear to think of how he would be affected. I am a positive person. I have always looked at tomorrow as being a brighter day. The glass is half full. Suicide is not the answer to anything. Finding myself in “suicidal positions” is not in my character or a part of my soul.
Psalm 19 — 20 then they cried to the Lord in their trouble, and he saved them from their distress. He sent out his word and healed them; he rescued them from the grave.
Finally, a doctor that was capable of guiding me towards a correct diagnosis. Out of all the medically skilled doctors I had seen, it was a Neuro- Ophthalmologist that brought me closer to the correct diagnosis. This brilliant, but very blunt man, ran a “Western Blot” blood test that showed Mycoplasma. I was told I had the highest amount of Mycoplasma “titters” he had ever seen. The Western Blot tests also revealed two IgM and IgG bands that indicated “spirochete organisms”. This doctor was blunt and to the point. In a very odd way he looked down at the floor and told me, “Well, I cannot talk about Lyme disease; you need to seek help from someone else. I believe you have a brain infection. You could die”. He prescribed an antibiotic, then out the door he went.
What are mycoplasmas? Mycoplasmas are the smallest but stealthy microorganism. They were discovered over one hundred years ago and evolved from bacteria. Sometime over the past thirty years, the organism has been altered to become more lethal and contain unusual gene sequences. The new forms of mycoplasma were specifically engineered for germ warfare but also capable of causing severe diseases in humans, such as; Gulf War Illness, Rheumatoid Arthritis, Myalgic Encephalomyelitis, Fibromyalgia, Multiple Chemical Sensitivity, Autoimmune Diseases and other degenerative diseases have been associated to Mycoplasmas.
My husband is a Gulf War Veteran with GWI. Thank you for your service honey.
I was being treated for Mycoplasma with an antibiotic that is also prescribed for Lyme Disease. I had IgM and IgG bands that indicated spirochete organisms which cause Lyme Disease. Mycoplasma can be a co-infection with Lyme Disease. So now it’s time to find a Lyme Literate Medical Doctor. Well, not so easy. Apparently Lyme Doctors (LLMDs) are in some sort of “secret society” and difficult to find. By the grace of God, a Harvard Graduate with a Medical Degree and a Lyme disease practice was found. Lyme was something this doctor felt compelled to treat as his wife had passed away from the disease. An appointment was set.
A long road trip was taken to see the Lyme doctor, two hours to be exact. I used to sit in traffic commuting for two hours daily, but two hours was one hundred and nineteen minutes too long for me nowadays.
Once we arrived, I was seen by the doctor quickly but the actual appointment took four hours. He was thorough and attentive. Once again a lot of blood work, this time an IGeneX lab test was run. Oh boy, was this appointment costly and once more, not covered by insurance. When the IGeneX test came back I was Lyme Disease positive. Having been diagnosed so late, the diagnosis became Late-Stage Lyme Disease. I was diagnosed by a laboratory blood test positive for Lyme, Borrelia burgdorferi and given a clinical diagnosis of Late-Stage Lyme disease.
Thank you medical community.
How unfortunate, this could have been treated right away with a proper diagnosis and a fast response. By not doing so, Lyme disease will be a lifelong battle. Again, thank you medical community.
Lyme Disease -Borrelia burgdorferi is a bacterial species of the spirochete class responsible for Lyme disease, transmitted to humans through an insect bite. Symptoms can be wide-ranging, depending on the stage of the infection.
Late-Stage Lyme Disease -When Lyme disease is not promptly or effectively treated, damage to the joints, nerves, and brain can develop months, or years, after you become infected. It is the last and often the most serious stage of the disease.
Very quickly I began treatment. When you are seen by a LLMD, their mission is to kill what’s inside of you without killing you first. It’s nothing pretty and leaves you feeling twice as sick as you were in the first place. Just when pain has been at its worst, there’s such a thing as more pain, a Herxheimer reaction.
Herxheimer- a die-off reaction from the death of harmful microorganisms within the body during a treatment. There is a release of toxins and oxidizing agents. When describing a Herxheimer, not defining it, die is the word you often want to use. It truly feels like you are dying, but I was compelled to fight… and I am still fighting.
As I started my Lyme treatments, other lab results were coming back indicating that I had:
Neuroborreliosis (Neurological Lyme)- A disorder of the central nervous system also affecting the spinal cord, A neurological manifestation of Lyme disease caused by a systemic infection of spirochetes.
•An appointment to see another neurologist was arranged and the diagnoses was confirmed.
Postural Orthostatic Tachycardia Syndrome -A heart condition with too little blood returning to the heart. The reduced blood flow to the heart causes the heart rate to increase (tachycardia).
•An appointment to see another cardiologist was arranged. A series of tests were ran, to include a table-tilt test, all confirming the heart condition.
Meningoencephalitis- A disease simultaneously resembling both meningitis, an infection or inflammation of the meninges, and encephalitis, an infection or inflammation of the brain.50%-75% who are diagnosed die within 18 months. Survival rate can increase when properly treated.
•My LLMD started treatment immediately.
Then came the lab reports of co-infections, reactivated viruses and parasites:
Toxoplasmosis- A disease caused by the parasite Toxoplasma gondii. Among other organs, the parasite infects the brain.
Toxoplasmic Meningoencephalitis-Meningoencephalitis occurring in toxoplasmosis, with seizures and mental confusion followed by coma; often fatal.
Epstein Barr virus (EBV) Cytomegalovirus (CMV) -Is related to the viruses that cause cold sores, chickenpox, mononucleosis, and shingles. In the US, 95% of all adults will be infected by age 40. EBV and CMV may cycle through periods when it lies dormant and then reactivates.
Lyme disease, and all that comes with it, was not registering in my mind. I did not understand the severity of this disease. My symptoms were obviously displaying the severity but I was confused. I was in a chronic state of unhealthiness, fighting for survival on a daily basis. Fighting for survival was all that I knew.
The Lyme doctor visits were often. Treatments were grueling. My husband told me about a conversation that took place between my doctor and myself. The doctor told me a story about a honey badger. He said, “The Guinness Book of World Records’ lists the honey badger as the most fearless animal in the world. You are a honey badger.” Apparently, I responded with “No, I am a gladiator. I will stand up against my opponent (Lyme) and fight for my life.”
I was certainly fighting like a gladiator and had many opponents to fight. I continued several different treatments with hopes of remission. Treatment with no remission equaled more treatments. I was going on, and on, and on with more treatments for eighteen-months nonstop; the fight of my life. But what I didn’t know was the fight would continue…
When an extraordinarily evolved disease enters the body, a biological hijacking occurs for which no human could ever be prepared for. A person’s physical and mental abilities are disrupted immensely and they are taken to their core, being forced to give up being the person they once were. Healing is not immediate; it is a slow process and requires patience at levels never sought out before. Persistence will be knocked down throughout the battle. It is a very dark and isolating place. Those inflected must possess the will and perseverance to fight. This fight is not just for survival but to get into a place where they can find peace and understanding.
The Lyme battle is about survival, but without peace and understanding, survival and perseverance become difficult
Listening to my grandmother’s voice on the phone telling me to lay still and breathe as my grandfather would speak to me and pray with me. I was in a place of peace when my grandfather spoke to me. His last words to me were, “Stacy you are a fighter and with God on your side you will be okay through these times and you will find peace.” He told me I was intelligent and intuitive and would one day figure out this disease for myself and others. His heart was failing and he was living beyond his time… He told me that God kept him alive to encourage and pray with me. I’m certain God kept him alive for a lot of us, but his words meant so much to me, even more so now that I have come to realize I am a fighter and I will figure this disease out, if not for me then for others.
God bless you grandma and grandpa in heaven.
I was still MIA, and it did not appear that I would be returning anytime soon. No remission, but a seed of hope started to sprout. My brain somewhat began to restore itself.I would have days of memories just flooding into my mind. It was as though I was watching a movie of my life.
My mind would become a bit sharper day by day, but I was still unable to read or process information. I was scared I would lose my memory again, so I began to keep a journal by using the iPhone assistant Siri and iPhone notes. I spoke into my phone, adding thoughts that I would recall, as well as incidents told to me. The journal started out as a means for me to keep my memory, then became my Lyme story.
I had an idea. If I could use Siri to help me journal, then why not use the iPhone assistant to help me research the disease I was fighting? As I continued my grueling treatments, from time-to-time I could function just enough to research. I thought, ‘”it is time to get to know my opponents; it is time to understand what I am fighting”, so I began a research mission. I was frustrated in the beginning, due to the inability of retaining the information Siri was reading, so I had Siri add everything to iPhone notes, with hopes of reading the research one day and understanding my disease; like dropping puzzle pieces into a box for someone to put the puzzle together at a later time.
Technology was a part of my survival and lead me to a place where I was able to start helping myself. I was self-empowered and convinced I would heal myself. Once realizing this, I felt as though I took a part of myself back.
One of my first discoveries found was the MTHFR gene. Contrary to how it looks, “MTHFR” is not an abbreviation for a curse word, but a shortened form of methylenetetrahydrofolate reductase; a methylation malfunction; or an easier way of putting it, a detoxification system malfunction for me. WELL ALL BE A MTHFR; I have mutated a MTHFR gene, and to make the MTHFR’ing situation even worse, my gene is mutated on both sides, so I can only clear toxins out of my body by 15- 30%. That explains why I’m sicker than most during microorganism die-off treatments.
All the microorganisms that took up occupancy in my body were being killed, and leaving behind toxins at a faster rate than I could clear them out. My treatments needed to slow down. Having an overload of toxins with an inflammatory response could cause the body’s blood pressure to drop and enter what is known as septic shock. I spoke to my doctor; he agreed that I would slow the treatments down while working on methylation.
Slowing down the killing process and allowing my body to detox certainly helped. The microbes were still having a party, but my body became less toxic, and I didn’t feel as though I was dying every day.
I noticed that on the days my body seemed to be less toxic, my brain was communicating a bit more with my lower and upper extremities. My legs and arms were somewhat more mobile. Having communication between the muscles and the brain through the nerves will help with muscle movement. Clearing out the toxic waste dump my body acquired during the treatments seemed to help the communication process between my brain and body. This was happening a few days a week, and very randomly, so I really did not know when I would have the ability to become more mobile. The pain never stopped, but the seed of hope was growing into a little tree.
I took those days that I had some mobility and started my own physical therapy routine. My father gave me some ideas about physical therapy while laying in bed, that made a lot of sense.
Bedridden physical therapy 101
First, I started out with stretching and movements in the bed I wanted so much to get out of; then went on to what I called my bedridden exercise routine. No, it was not yoga, jogging, swimming, weight lifting, or bike riding, but it was an exercise routine and that was something I have lived my entire life doing. My bedridden physical therapy started out with ankle plantar-flexion; an exercise that can help maintain range of motion and increase blood circulation. Then ended with arm and leg lifts. I would use what little body weight that I had to do resistant arm lifts and leg lifts.
I was diagnosed with hyper-coagulability, a thickening of the blood and in danger of blood clots. My physical therapy was helping with that, and before I knew it, I was strong enough to use a walker; and from the walker, I was able to walk. I just knew I was close to dancing, even if it was in the rain -JFC
My independence would be another part of survival with fighting Lyme. I have always been an independent person, so having to rely on someone other than myself was frustrating. I wanted to relieve my husband and son of taking care of me just as much as wanting my own independence, and it was beginning to happen. The seed of hope that sprouted into a tree was now producing fruit, Lyme. I was taking a bite out of it.
I was making progress, but it becomes confusing when you have a day that you think is winning the battle, but you wake up the next day to find yourself unable to function.
I’ve heard my husband say, “Oh she has her good days and bad days,” or my father referring to things becoming normal. Honestly, I have bad days that I can handle, horrible days when I have to fight harder, and days I cannot believe I’ve survived. What was once normal is now a chronic state of pain. Every day is a fight, and painting a smile on my face is my new normal.
The days that I could function, I would focus on independence, self-empowerment, and determination. These were days of researching my opponent Lyme and stabilizing my body. Most of these days I would only have a few productive hours but I would spend them wisely.
As I continued researching, I started to question certain techniques my Lyme doctor was using. He was not happy with my questioning. There was no disrespect toward him, I knew he had a difficult job due to the complexity of Lyme disease. But I also knew the scientific studies behind each technique he was using. I no longer wanted to be a patient being told what to do. I wanted to be a part of my treatment plan. He explained my next treatment and gave advice. The appointment ended and a long road trip home began. It was different this time. I was not gazing out the window with confusion, I was processing my treatment plan.
I took his advice with caution researching every detail, before starting another treatment. I knew more about Lyme now and I also knew what I was about to put my body through. Having done treatments for over an entire year nonstop, I feared what was coming. I would be MIA, even in my own head-space, for quite some time.
I did not like the thought of going backwards from all the progress I had made. But I was already starting to have more horrible days than functioning days. This treatment was really my last hope… Once again I was told “you could die.” I was literally crying out for my mommy and like a child wanting to run away from the torment I was knowingly about to put myself through.
I found myself facing fear but my faith in trusting God took away that fear.
Isaiah 41:10. Do not fear, for I am with you; do not be dismayed, for I am you GOD. I will strengthen you and help you; I will uphold you with my righteous right hand.
So off I went into a deep dark place. It was my faith, son and husband that kept me alive and pulled me through. I was mentally and physically MIA for months, having head pain, seizures, cardiac irregularities, daily flu symptoms, rashes, breathing issues, memory impairment, disorientation, rage, so much pain I would pass out. Night terrors and hallucinations — I would leave the house and wander around in the dark streets confused and in pain. Oh the pain, the pain, the pain, the pain.
Once again I survived a battle, but Lyme is a war. I knew I was on a time frame to figure out what was next. I was NOT in remission and the death prognosis was hanging over my head. Literally, it was my head, the microorganisms had a hold of my brain.
— A round trip ticket —
Eventually I began to pick up where I had left off. It had been months and a full circle. A round trip ticket. So I was back to where I started with my research mission but, this time, I felt spiritually guided.
I kept running across a well-known herbalist named Steven Buhner. As I researched his recommended protocols, case studies, and research data I discovered that his knowledge of and approach to Lyme disease was advanced far beyond the knowledge of Western Medicine. I found his theory and logic to be the approach I needed to fight Lyme disease.
I was fully convinced his protocol would save my life. I picked up the phone and rattled on to my parents about what I had found. My mother ordered one of the many books he’s written, Healing Lyme.
I was still unable to read, and this was something Siri could not help me with. My husband and son would read to me for 30 minutes a night, and it was intense. As I said before, Lyme is a very complex disease, and this book gave me a lot of insight. I was amazed with Steven Buhner’s knowledge of Lyme, and how he connected the disease to herbal healing.
The book gives a basic protocol for Lyme disease. It also gives a list of suggested herbs for additional symptoms. Every suggested herb aids in the healing of each symptom. It is up to the self-empowered individual to patch together and form a unique treatment plan designed specifically for their type of Lyme disease.
Using my Lyme diagnosis as the main part of my protocol along with my additional symptoms I was experiencing, I was able to create a treatment plan for my particular type of Lyme.I started Buhner’s Lyme protocol, and three days into it I had a major Herx. But hey, I was used to the pain game.
The protocol is a process and requires a lot of patience. One must really listen to ones body’s response.
As a child I would play the game ‘red light, green light, with my brother and our friends. This protocol reminded me of the game. Green light, okay, go take the herbs. Red light, now stop and listen, what is your body telling you? I’m too toxic, okay, take this herb. I’m feeling a lot of inflammation in my brain, okay take this herb. Green light, go more herbs.
I began to experience symptom relief within about a month. Excited with my progress and focusing on the positive, I explained the improvement to my LLMD. I suggested this could be a combined treatment approach. Many people have done this. I asked him if he would treat my co-infections as I continued Buhner’s protocol for Lyme.
We had a conversation that went in circles. Once again, he told me that I have a serious brain disease that is life threatening. Okay Lyme Doctor, you’ve told me this for a year now, and I’ve heard it from another doctor. I have confirmed this shorter life expectancy with my own research. But still, this changes nothing. You said that with a year of non-stop treatments, I could go into remission. I’m not dead and I am not in remission. The circle conversation resumed. I’m not one for listening to people who talk in circles, even more so when I’m sick. All I wanted was remission, and I was not getting it under his care.
REMISSION
A. Medicine; Abatement or subsiding of the symptoms of a disease.
B. The period during which the symptoms of a disease abate or subside.
I left his practice and started seeing an internal medicine doctor. This doctor agreed to help treat what he can treat. He is what I consider to be my co-infection doctor and I am treating Lyme with Bruhners protocol.
Fighting Lyme is a daily battle. The maintenance is exhausting. There is no magical pill that will make the frustration of this disease go away. I start my day never knowing what I will feel like and end my day never knowing what I will feel like. But I have a goal and that is to go into remission so I found a protocol with hopes of giving myself more relief and possibly going into remission. I also wanted to share my research with others suffering with Lyme.
If my experience and research can help others suffering with Lyme, then I believe I am fighting the fight — time to spread the knowledge
Have you ever noticed that a personal friendship will appear or disappear at different times in your life? I would never have thought that I would have made a new friend while feeling so terribly sick, but I did. This friend shares with me a complete understanding of what it is like to lose your health and lifestyle to Lyme; she too suffers from Lyme and I was determined to help her gain remission. I told her all about Steven Buhner’s protocol and she was just as excited as I was. When my father first introduced us over the phone it was sad and disappointing to hear about the long struggle she endured with Lyme and having no remission. We became Lyme sisters in a matter of minutes from a phone call and our friendship flourished while fighting our battle with Lyme. She fights a different Lyme than I; her co-infections are different, our genetics are different, and our environments are different. This would present us with different symptoms, but it didn’t stop us from helping one another. On functional days, we would compare Lyme experiences, share research, and encourage one another. Finding Steven Buhner’s protocol was one of those days of finding hope and passing along the hopeful information to her as she often did for me.
I started communicating with the Lyme community about Steven Buhner’s knowledge of Lyme and his protocol.
I received a lot of response. Some spoke about him with the utmost respect in having success with his Lyme protocol. Others did not know anything about him but intrigued. Some apprehensive about using herbs while others were willing to try just about anything to escape the pain of Lyme disease. Spreading what I knew to others and hearing their feedback gave me a sense of accomplishment. I was helping others while helping myself.
At this stage of my journey I was really focusing on a remission regimen that would help me and others with Lyme. I combined both the Lyme protocol along with co-infection treatments and this became my remission regimen. This was something I found to be quite helpful.
I started to become my own little caregiver and I continue doing this
Your memory really gets entangled with neuroborreliosis, the brain disorder caused by Lyme. Daily tasks become difficult and require assistance. I did not have assistance to help me with my new daily regimen; I needed to find a way to remind myself what needed to be done. I needed to implement a system. I had to figure out a system that would keep me on track with the tasks that needed to be done. I have 42 capsules of herbs, supplements, probiotics, and pharmaceuticals that need to be taken throughout the day.
I have to methylate with sublingual glutathione; this a method of releasing toxins within the body. I also have to give myself methylfoate shots for lowering a substance called homocysteine, which can be toxic at high levels. If I went a day without methylating, my brain and body would feel the toxic effects the following day.
My PH levels need to be checked daily to make sure that they are not too low. A low PH level will cause both viral and bacterial infections to become difficult to fight. I can not forget to take a certain type of nutritional powder for replacing the nutrients the microorganisms are stealing from my body.
If you are struggling with a daily Lyme routine, or you are scared to leave your loved one alone with the overwhelming daily regiments that must be done, and the handful of pills that must be taken throughout the day, I really believe in the system that I made for myself. It keeps me on track and I am less confused and stressed out. It is good for the caregiver too —
When I have my wits about myself, I prepare BPA-free baggies with pharmaceuticals, herbs, vitamins, minerals supplements, etc., for each hour of the day. There is a separate chart showing the pills I am supposed to take, and at what hour of the day. This is all programmed into an alarm on my phone. The phone alarm goes off, displaying what I need to take and directing me to the chart. I take the Lyme cocktail (pills, power herbs, pharmaceuticals etc), and mark it off as ‘taken’ on the chart. There are several baggies for the day, several alarm reminders that go off throughout the day. I generally do a week’s worth of daily baggies, stacking the baggings onto one another with a clip holding them together. Each baggie has the day of the week and the hour to take the pills. This also works with daily regiments (detoxification, dry brushing, etc) by setting alarms and marking the regiment as ‘completed’ on the chart. This works for certain tasks during a herx (I make sure I have plenty of alka-seltzer gold for herxing; it alkalizes the body). All of my doctor appointments are setup as reminders with alarms reminding me. I lay out clothing for each day of the week. A functional Stacy is taking care of the future Stacy that may go MIA.
When I go completely MIA my system works well. There are times that I have no choice but to receive additional help from my husband or my son, but they are not as overwhelmed.
I would check in with those that have concern, while playing the leading role of a ‘well person with a painted smile on my face’. At times, I felt fake and didn’t like to pretend. I was always an upfront and honest person, but who wants to hear the same ol’ story time and time again about a chronic illness you fight daily?
Days, weeks, months, and years went by with my new way of fighting Lyme
My disease, being unpredictable; me being unpredictable, yet I was managing better than in the past and noticing a little more of an improvement. At this point of my journey, I slowy began to read and write.
I decided to go through years of e-mails and texting. It filled my heart with joy to see how many beautiful souls continued to communicate with me despite knowing I wasn’t there; I was MIA. One friend, in particular, would send me pictures and encouraging words while keeping me updated almost daily. Friends that would text me daily, cheering me on. Emails of concern and updates. This communication has continued; only now, I am able to respond. The response may not come right away, but when I’m functioning, I respond. I have found that yes, there are caring people that do want to hear the same ol’ story, they are the ones asking.
Lyme turns you into a fighter, and it also turns you into a health detective when putting together a large puzzle of Lyme
Lyme patients are often forced to be their own health detective in the midst of fighting Lyme. They may have a diagnosis, but that is just a small piece of the puzzle.
While fighting for survival, you are also trying to figure out what keeps you moving forward, what is keeping you stagnant, and what is pushing you backwards. This is not a disease that with medication, herbs, supplements, diet, or a lifestyle change, you will be cured. This is a disease that requires all the above and more to heal and move towards a possible remission. You have to be your own detective by putting together the Lyme disease puzzle.
My Lyme disease puzzle had several pieces keeping me from remission. These pieces were actually issues that were keeping me in a stagnant state, and I was unable to move forward. They were affecting my health and interfering with my fight against Lyme. For the next several months, I worked on addressing these issues. One of the issues I had to acknowledge and address was unresolved psychological stress. I was having nightmares that gave me considerable amounts of stress and anxiety. My nightmares were bringing up unresolved issues from the beginning of my disease.
I was diagnosed with Post Traumatic Stress Disorder PTSD and told I was experiencing traumatic psychological stress due to the chronic disease I was fighting and how it was being dealt with through myself and by others.
Post Traumatic Stress Disorder needs to be picked apart and worked on by addressing each problem, one at a time. I was surprised to know that my actual disease was not the biggest healing block, it was the lack of family support, and certain people that emotionally hurt me while I was in a time of need. So, in order to move forward I had to let go of people that were emotionally hurting and stressing me the most throughout my illness. I was told to confront them to explain how I felt, listen to their responses, and if I received excuses with no willingness for compassion or helpfulness, to let that person go. It did not matter who that person was. This was about my fight for survival with a highly evolved disease, not a fight of he said she said.
Many people with Lyme disease who go into remission claim that emotional healing was a big part of their treatment plan. This was something I was not going to ignore. My health and remission was counting on it.
I did as instructed and what I knew needed to be done with the people in my life that added additional pain to my disease. I let them go. I forgave them, and cleared their hurtful actions from my mind. This was a very difficult task, especially when there is so much hurt involved and the individuals were once so important to me.
This gave me a new sense of clarity. I started to realize who truly cared during my times of need, who cared out of obligation or guilt, and who didn’t really care at all. I also discovered who put forth the effort to understand my disease and its complexity, who hurt me out of a lack of knowledge, and who selfishly cared only about themselves, with no intentions of stepping into something that could give them a feeling of helplessness or fear.
I was scooting forward within my Lyme journey, but still finding more pieces of the puzzle I needed to address. I continued having success with my treatments by using my own system to take care of myself. I remained as mindful as my mind would permit. I pulled away from hurtful people and focused on those that truly cared. This helped me by reducing stress and gave me the ability to focus more on the other pieces of the Lyme puzzle.
Shortly before being diagnosed with Lyme disease, I would have dizzy spells that at times would cause me to pass out. After a few lab tests were run, I was diagnosed with electromagnetic hypersensitivity, then told that I would need to avoid electromagnetic fields as much possible, limit my usage of cellphone calls, and avoid utilizing WiFi with my computer.
So, I did some research on electromagnetic hypersensitivity (I did this research on my iPad using WiFi, oops). I read a lot of interesting information that did make sense, but the information also sounded really bizarre. At the time, I was not willing to limit my technology to prevent the dizzy spells due to a bizarre diagnosis that I was not totally convinced of.
Electric and magnetic fields (EMFs) are invisible areas of energy, often referred to as radiation.
•EMF Sources
•Microwave ovens
•Computers
•House energy smart meters
•Wireless (wifi) networks
•Cell Phones
•Bluetooth devices
•Power lines
•MRIs
The sun is a source of natural EMFs, including visible light and UV radiation.
The EMFs from the earth and the sun synch with our body’s biological rhythms. Our own electromagnetic signals are weak compared to the man-made EMFs. Exposure to man-made EMFs, such as cell phones and cell phone towers, can interfere with the electromagnetic systems inside of our bodies, particularly the brain, the heart, and mitochondria. EMFs can also weaken the immune system, and cause inflammatory problems to worsen.
By the time I was diagnosed with Lyme, I was too sick to realize that I was living in a high-EMF environment which was compromising my ability to fight Lyme disease. I live with two highly advanced technological individuals. Our lifestyle surrounded by EMFs. Unfortunately, it took time for all of us to understand the damage that EMFs were causing.
Lyme spirochete organisms will multiple quickly in the presence of EMFs. They will suddenly believe that they are being attacked and as a response to the attack they will release poisonous toxins as they multiply.
One day the electricity went out in the entire area where lived. There was no electricity for several hours. My husband noticed that I appeared to look less sick, and I was not struggling as much. There seemed to be an improvement. A small improvement, but an improvement. This made him think that possibly there is a link between my struggles with fighting Lyme and EMFs. Sure enough, once the electricity turned on, my improvement turned off.
Changes began to happen around the house with eliminating EMFs. My husband bought a landline, kept me away from electronics, turned the WiFi off, used the microwave very little, and did what he could to eliminate any EMFs as possible. I began to have less seizures and rashes. My head pain improved a little, and my ability to communicate became easier.
I began to use a landline and I haven’t stopped. I tried using my cellphone a few times but after having excruciating head pain, seizures and scrambled conversations it was not worth the convenience of a cellphone call verses a landline call.Texting was and still remains very limited. I almost always have strange rashes that appear either on my face, neck, fingers, arms or stomach during an extended period of texting or checking my emails.
I learned that turning my mobile devices on airplane mode drops the electric potential, below 0.01. So as strange as it may sound, I compose my texting and emails in airplane mode, then send them through the network via wifi or LTE. Then turn my cellphone back to airplane mode. The obsessive-compulsive behavior helps with my Neuro-Lyme (Lyme brain) and protects me from spirochete destruction.
It becomes frustrating at times explaining EMFs and how I am extremely affected by them due to Lyme disease. But generally those people that do not understand electromagnetic hypersensitivity do not understand Lyme disease either. My advice to the skeptics that lack knowledge is to take some time, not for me, but for your own self, and research EMFs. They do affect everyone and can very well cause illness, cancer and disease.
Looking back at all the research I did using Siri technology as a part of learning about my disease and how to fight Lyme, it was the only way that I knew to help myself. No one was doing it for me. I could not read and could barley comprehend, so Siri was my help, but also an EMF source. It was a double edged sword; Siri was adding problems to my fight against Lyme, but I was able to get the research I needed. Technology was a major part of helping with my treatment, but also a negative downfall with my fight. Was it worth the pain and risk? YES. But will I do it again while I’m trying to heal and find remission? No.
So how do I post to Medium and read your stories if I’m EMF hyper sensitive?
The same obsessive compulsive way I text and email.
Mold is a sneaky fungus and another piece of the Lyme puzzle
As much as EMFs affect my ability to fight Lyme, so does mold. Small amounts of mold will not harm a person, but for a person fighting Lyme disease, mold can cause a lot of harm. When mold is subjected to EMFs, it produces 600 times more poisonous toxins than with out being subjected to them. Mold spores are everywhere, and so are EMFs. It takes a huge effort to eliminate both. Without the elimination I will continue to have seizures, rashes, and spirochete organisms multiplying and causing destruction to my body, especially my brain.
More changes began to happen around the house. My husband hired a highly recommended environmental specialist who found traces of mold on everything in our house. Since Lyme caused me to become chemically sensitive, a bottle of bleach would not solve this problem. My husband hired a company to clean the HVAC unit, and air ducts. He even added a UV light on the system. Looking back, I believe my husbands effort with trying to heal me did more for me than the actual effects to remove mold. Unfortunately, everything done was a temporary fix.
Mold is a sneaky fungus. The signs of mold could be all around you but your eyes and nose may not pick up on its lurking ways. Mold spores are a common component of a household, however, depending on the type of mold and the amount of mold, it could be considered hazardous to a persons health. Completely eradicating mold is very difficult. Mold spores will float through the air in a humid or damp environment and land on everything. If you think packing up and moving will solve the problem, then keep reading…
My home would hopefully become a place of healing and a place of remission
I am still playing Lyme detective and addressing anything that would weaken my Lyme fight, to gain remission. Mold was another setback. My husband and myself spoke to many experts in this field and the conclusion was that in order to eliminate even the smallest amount of mold, a move would be necessary and with this move all belongings must be eliminated. We would have to part with our cherished memories, this was devastating. Everything we worked so hard for, we would have to let go because Lyme disease said so.
The move was not something we acted on quickly. We, as a family, the three of us, contemplated, procrastinated, thought of other options, went into denial, spoke to more experts and did a lot of researching. Then the move started to make sense. I was in no condition for a move but like everything else within the last three years it was the path to better health.
I typically did not talk to most people about what I was fighting. I was scared to tell people I was sick. Having to explain Lyme disease, how I contracted it, and why it went neurological was overwhelming. I felt embarrassed to be out in public. I was 92 pounds at 5'7", I was having seizures, scrambled conversations, falling over from dizziness, rashes would appear, or I would feel too sick and in too much pain to stand being around people. Making decisions was difficult, but I knew what needed to be done: I had to search for a house.
On days when I could function, my husband and I would meet up with our realtor in search of the perfect home, here I could heal and reach remission. I would pack a bag of all my medications, herbs, special diet and methylation equipment. It was as though we were going on a long trip. In the past thirty years my husband and I have bought houses, built houses, rented houses, and sold houses and every move brought excitement. This time it was not the same. It was about finding a healing environment and our requests did not fall in line with the normal house-buying requests. Our realtor took the time and effort to understand Lyme disease and was very caring towards our requests.
Finally, success. My husband and I found an area that we felt would meet our needs. Even though my healing was the priority, he and I did not plan on taking a loss on a real estate investment. We found a great area that is growing and prospering. It is a beautiful community with all new home construction, far enough away from a lot of EMF noise (at least for a while until the town grows). We had a meeting with the new home sales representative. He was already aware of our needs, thanks to our realtor, which made our requests a bit easier.
During the months that we were working with our home building team, we were also taking advice from several environmental experts about parting with our belongings. We were fortunate enough to keep a few of our items, but we did have to part with a lot. Putting it all into perspective is about fighting Lyme, not owning possessions. My husband, son and I wanted my health back and that’s all that mattered.
The move was a horror show, but I am now living in a house that I am hopeful will be my home of healing and remission. All of our unusual requests were met. Our house was beautifully painted with VOC-free paint. An air purification system was installed through the heating, ventilation, and air conditioning units, along with humidity detectors. The HVAC coil was coated with a microbial shield and off-gassed prior to the installation. The entire house was wired in such a way that would lower EMFs. We purchased some environmentally clean furniture and all items were off-gassed before entering our home. We still have more to do before this house is the perfect house for healing, but for now it’s a start.
Welcome to the neighborhood…
Hi, I’m your neighbor, the one you see stumbling around and falling over. I’m the neighbor that tries to hold a conversation but becomes confused. I’m sure you are wondering why I’m so severely underweight but I would rather hide than explain that I am sick. Maybe I will carry a glass of wine around with me and use the excuse of being “tipsy”, but how do I explain the boneyard body?I’m sure eventually, a new neighbor will ask me if I’m alright. It always seems to come to that. And when it does, I am forced to reveal what I try so hard to hide. “ It’s Lyme disease,” I’ll say, and then there always seems to be a sigh and a look of pity. I decided I would try to gain weight. Maybe I wouldn’t look so much like a person who is dying from a disease, just a person fighting Lyme. Maybe by gaining weight I would not get the sigh and the look of pity.
It has been difficult for me to eat throughout my entire illness. I am never hungry, and at times food will make me feel sicker; but my husband always makes sure I am eating. My special diet is very healthy, and keeps my disease under control. No matter how much I try to eat I cannot gain weight. Some months, I was eating more and actually losing weight. I wanted to gain weight so I could stand in front of a mirror and look at myself; I wanted to wear my clothes in my closet; I didn’t want to be embarrassed anymore, and moving into a new neighborhood finalized my determination to gain weight.
I started what most would consider an unhealthy diet to gain weight. Never eat before going to bed? OK, I did just that. I managed to find some gluten-free, preservative-free, nightshade-free, organic chickpea chips and I would eat the entire bag with yogurt every night, right before bedtime. It started out as a disaster. I was terribly sick from it and made my husband worry, but I continued when he went out of town so he wouldn’t stop me. I gained a little weight within a week. It was the first step toward gaining more weight —
I began wearing my clothes again. It was nearly four years, and as I would put on an outfit that seemed new to me, it would remind me of a story. When I wore the outfit last, why I bought it, etc. I felt happy but sad. Putting on my clothes made me miss certain things. I really miss working, going on date nights with my husband, meeting up with friends, and most of all, feeling healthy in my clothes. I was happy that I didn’t look like a skeleton in oversized clothing, and the extra weight gave me the appearance that I looked healthy, so maybe I could really pull off being healthy.
Time to meet the neighbors. I was able to meet a few, and I even pulled off being normal and healthy. Then Lyme hit me hard, and winter set in. Before I got trapped indoors and had to go into gladiator mode fighting, I was able to spend some time with my next door neighbors. I learned that the husband suffers from a mysterious illness and was diagnosed with electromagnetic hypersensitivity. His wife knew more about Lyme disease than most of the medical community I’ve been around. What is the likelihood of living next door to people that completely understand what it is like being imprisoned by an illness you fight every day? I thank God but I feel guilty. I don’t want another human being to go through what I go through but maybe God brought us all together for a reason.
‘Lyme’ is a blanket term, and behind the blanket is a Multiple-Systemic Disease with many facets
Nearly four years have gone by with me fighting a daily battle of Lyme disease. I have tried different ways to win this fight. I have tried pharmaceuticals, herbs, supplements and methylation techniques. I have tried eliminating psychological factors and environmental factors with hopes of making the fight easier. I have changed my diet and my lifestyle. I have relocated to a different house. I tried suggestions by others fighting Lyme. I have researched what I am up against with Lyme and created my own methods. I use every bit of strength I have to fight Lyme. I rely on prayer, my faith, my savior, and my family to fight this disease called Lyme. Nearly four years have gone by and I have fought Lyme every single day.
I believe Lyme is a blanket term. I have used Lyme as a blanket term on many occasions. When uncovering the Lyme blanket you will find that the majority of people who are fighting Lyme are also fighting multiple diseases, infections, microorganisms, parasites, and bacteria. For most of us fighting Lyme it is easier to use the Lyme blanket term than to explain what other diseases and infections we are fighting.
Just so there is no confusion when I say I am fighting Lyme disease, I will uncover my nearly four-year-old Lyme blanket and reveal the ‘all inclusive’ daily fight with multiple diseases, infections, microorganisms, parasites, and bacteria.
I am still fighting Mycoplasma and the reactivated viruses EBV and CMV all of which are now considered chronic. I am still being treated for Postural Orthostatic Tachycardia and Meningoencephalitis. Oh yeah, and the actual Lyme blanket — Lyme, Borrelia burgdorferi, the spirochetes that have manifested into Neuroborreliosis. This is my fight called Lyme.
I still continue to have seizures, convulsions, head pain, vertigo, blurred vision, dizziness, motion sickness, confusion, disorientation and memory impairment. I think I scare my family more with these disorders. What scares me the most is the heart irregularities, turning blue from lack of oxygen, and most of all the severe head pain that causes me to pass out. The flu-like symptoms, arthritic pain, rashes, hangover feelings, fatigue and excessive sleeping, I just pretend like it’s New Year’s Day and I enjoyed the night before. I still have anxiety, depression and rage which seems to be an added bonus for Lyme sufferers.
Like the puzzle I am trying to solve
I find it puzzling that some days I can somewhat ignore the pain, walk away from a seizure, put ice on my head and paint a smile on my face, when other days I can barely pick my head up off of my pillow and I feel as though death is setting in.
Now I ask you, how would I explain what I have and what I am fighting without using the blanket term “Lyme?” I say I’m fighting Lyme and it is up to anyone who cares to gain the knowledge and understand the multitude of ailments that come with Lyme.
So now what
Will I ever go into remission? Will I ever have a pain-free day? Will I ever have a day when I feel normal? Will the disease process eventually kill me? I am a believer that when you envision something and pray it will happen — I see the remission line and I have faith. I will continue to fight forward and I will never give up hope. But if I die before I wake, I pray the lord my soul to take.
I’ve missed out on a lot of events, reunions, weddings, graduations, funerals, and pretty much keeping up with anything going on with the outside world. Lyme takes away your health and the world you once lived in. It takes you to a place so deep within yourself that you almost forget there is an outside world. It’s not selfishness it is survival. All I can do is hope people understand while I continue to fight so that maybe one day, I will be part of the outside world once again.
Lyme disease is my biggest loss but also my strongest gain
While the world moves around me, I am in a place deep within myself; it is my spiritual journey, a place that I have never before encountered. As my physical body fights for survival, my inner spirit takes me on a different kind of journey. This is my true teacher. I have learned more about myself than I ever thought possible. Lyme disease not only brings dark days of suffering, it also brings spiritual gifts. Being taken to my core with this disease has provided an extraordinary awakening of my spiritual consciousness. I have found my gifts of great richness to be my blessings in a time of pain and sorrow. Among them, a deeper relationship with God, a stronger ability to rely on my faith, and when the pain has ahold of me so tight, I am able to escape with prayer. I have been shown a different form of love and trust.
Patience has taken me to a completely different level. Every day is a fight, and with that I have found more strength and courage than I ever thought possible. I am humbled in ways I never knew existed. I have acceptance, without questioning.
Lyme disease has changed my perspective with almost everything. I’m always vigilant with my everyday choices. I listen to my inner-self more. I have learned to approach healing from many directions and possibilities.
My love, appreciation, and respect for my son and husband is so profound. I have a vast bond that is unbreakable with them. There is an interconnection they have alongside me with this disease. They have given me the gift of a higher level of love. They are my heroes fighting next to me in the Lyme battle field. My son has the inner-strength, compassion, patience, and encouragement of a thousand men. His calming voice has saved my life. My husband is the army of one.
I have grown closer to my brother and have a deeper understanding of his daily battles (fighting an illness) that I once only knew from an outsiders perspective. Hearing my brother’s voice and reminiscing over memories we shared together has helped me in many ways. He reminds me to be the person that I once was and brings out that person in me. Our daily talks keep me focused on the future. We laugh, we sing, I cry but we focus on better days to come.
A person could spend their entire lifetime not realizing the importance of their own surroundings. They are in constant movement, like the world around them. While in this movement, they are too blind to see what is moving them; and who is with them along the way. They are passing by important signs. When something stops them, like a long-term illness, they are forced to stand still and begin to see the signs. They will see things for what they really are. Lyme has given me an opportunity to stand still, and see things for what they really are. When I begin to step into the movement once again, I will take a slower approach and remain mindful of the signs. It is not where we have been, or where were are going; it is what makes us move, who is by our side as we move and the important signs along the way.
While I stood still in a place within myself, as the world continued to move for many years, I was enlightened by the signs that God gave me — A trial leads to triumph; the presence of difficulty is an indication that God will use you in the area that you have suffered to help others. Is it my destiny to help others with Lyme and give awareness to those that lack knowledge? The signs are certainly there. My suffering is not a lack of faith or a lack of relationship with my savior; I am not cursed and struck with bad luck — God uses illnesses to accomplish His will. God places his strongest believers in your life to help with his will.
It was within my stillness that I became aware of those that stayed with me. It was their silent hugs that meant a thousand words to my struggling spirit. As I physically struggled my spirit was lifted by true love, loyalty and courage. These kind souls went above and beyond learning and understanding what I struggle with. I have mentally been in places that no one would ever want to go, but their hands of love and compassion have lifted me up. I have been a very tough one to lift at times and wondered why they didn’t run the other way. They never argued, only listened and spoke with such encouraging words. I am blessed to have these beautiful people in my life. I hope that anyone suffering from Lyme, or any life-threatening illness has at least one person that understands their fight, and fills their ears with encouraging words — If you know of that person fighting, don’t be afraid to stand by there side.
I have shared the struggles of my most private moments with fighting Lyme disease through a story that has been very difficult to write, both mentally and physically. My Lyme journey is mine to keep, but it is yours to find awareness. Lyme awareness can be found through many eyes: the eyes of the beholder fighting Lyme, the eyes of the family and friends feeling confused and helpless, and the eyes of the complete stranger, hoping that Lyme never takes hold of their life. I have been given a very difficult trial, but now I feel the hands of a higher power guiding me to use my struggle to help others.
In life there is a beginning and there is an ending. I believe you may have many beginnings and many endings. Let this not be my final ending, but an end to a new beginning.
Stacy Cellier Gomez
MIA, The Lyme Story — Series One
Coming soon…
Let the Truth be Told — MIA Series Two
Questions, concerns, needing help, or just freaking out… feel free to email me at:
Stacy.celliergomez@me.com
I look forward to your comments and claps😘
