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I am seeking your help for my friend and co-worker, Heather Johnson. In February 2016, Heather was diagnosed with stage 3/late stage Lyme disease. Lyme disease is an infection caused by being bitten by an infected deer tick. The disease starts at the site of the bite but can spread throughout the body if left untreated. Late stage indicates that the Lyme disease and associated co-infections have been present in the body for a significant period of time and have begun attacking the joint, nerves and brain. At this time, Heather is afflicted with the Lyme, several co-infections and a host of autoimmune diseases that are weakening her immune system and making it more difficult to fight the infections within her body. Heather doesn’t recall ever being bitten by a tick. Here is Heather’s story…
Beginning in August 2014, Heather began having extreme neurological issues accompanied by constant muscle and joint aches and pains; numbness in her arms, legs and face; forgetfulness; vision issues and sensitivity to foods that never existed before. The chronic fatigue was intense and Heather bounced back and forth between insomnia (sleeping approximately 2 hours a night) to wanting to sleep an entire day at a time. With the symptoms described above, coupled with sensitivity to heat and cold, nausea, tension headaches and increased anxiety, Heather sought treatment with her doctor. Over the next 18 months, she was referred to several doctors and specialists, all who believed and treated her as though she had fibromyalgia. Insistent that this was not the proper diagnosis, she went on a personal quest to find a doctor who could properly assess all of her symptoms and determine what was causing her debilitating pain and neurological issues. After seeing a rheumatologist, acupuncturist, physical therapist, endocrinologist and sitting on the waiting list for several gastrointestinal doctors, the diagnosis and medicine offered to Heather weren’t working. In November 2015, Heather suffered a series of several small seizures, which indicated that her symptoms were becoming more extreme and serious. Venturing out of her HMO network and into the cash paying world and racking up medical debt through MRIs, CT scans and the like, Heather found an amazing neurologist to help her combat the war inside her body that was now affecting her brain. At this point, Heather had not received a diagnosis of Lyme disease and it was believed that she was a newly diagnosed epileptic. On medication to control the seizures, the tail end of 2015 and the early part of 2016 seemed to show some improvement in her health condition, minus the chronic food allergens and subsequent pain from ingesting the “wrong” foods. However, at some point in late January/early February 2016, Heather’s health took a rapid decline. Being on a restricted food diet anyway due to allergens, the “safe” foods that Heather had been able to eat without issue suddenly became problem foods and her ability to nourish her body became more and more dire. Between nausea and vomiting, Heather lost a significant amount of weight in a short period of time. Her thoughts and memory became disjointed. Heather had seen so many doctors that told her that she was “crazy” and “depressed” and that she needed to take anti-depressants and move on with life. But this was her life; constantly wondering how to find proper medical care to stop the slipping of the memory, thoughts, ideas and cognitive ability to communicate, read and write. It was all becoming so much work. She wondered why she couldn’t remember how to get to certain places she had been before; why her son’s teacher’s name couldn’t be recalled; why every single thought was so difficult to muster up; and why her communication skills were declining. On February 25, 2016, Heather met with a Lyme disease specialist after performing intense searching on the internet to attempt to find some resolve. That same day, using blood work and tests that had been done over a series of months, Heather was diagnosed with Stage 3 (late stage) Lyme disease. At this point, the disease and its co-infections had become so progressed that they are now affecting Heather’s brain and causing the epileptic seizures and cognitive decline. Two weeks after her diagnosis, Heather was hospitalized for 10 days and eventually had her gallbladder and appendix removed because the infections in her stomach created by the Lyme had robbed those organs of the oxygen they needed to survive. Since that time, the focus has been on creating a hospitable environment within her gut to tolerate food and medicine needed for her continued treatment. Over the last three and a half months, Heather’s doctor has been attempting to create an environment in her body that is able to sustain an intense 90-day round of antibiotics. With the weakened immune system due to autoimmune diseases in Heather’s body, it was imperative to build up her gut and stomach to be tolerant.
In May, after several back-to-back doctor appointments where Heather reported migraines, extreme vertigo, fatigue, forgetfulness, memory issues, inability to remember names or faces, inability to grasp words or communicate without long pauses in conversation to recall specific words or ideas, and just a very real and noticeable slowdown in processing information, Heather underwent a Brain Health Evaluation (BHE) under the direction of her functional medicine doctor and a neurologist not associated with her Lyme disease treatment. The BHE revealed that Heather’s brain has suffered a tremendous blow from the infections caused by Lyme and that her function of the brain is approximately 30% of “normal.” The ability to process information and understand word meanings and logic were less than 19%.
The recommended treatment from the results of the BHE are a series of 40 hyperbaric dives in an oxygen chamber. These dives immerse the patient in oxygen for 90 minutes at a time and help to regenerate brain cells at an accelerated rate. Given that Heather’s cognitive brain health has rapidly declined over the last few months, her doctor recommended a series of 40 treatments immediately. The infection in her brain is still raging and Heather’s ability to maintain the cognitive attention and memory is imperative.
Today, Heather is on a powerful series of medications and supplements that have her consuming approximately 50 pills a day, all timed out perfectly to avoid counteracting each other. The list of prescriptions to combat all of the issues in her body is ever-growing. She is currently battling her insurance company to assist in the coverage of her in-home IV infusion therapy, which runs $142/day for a minimum of 90 days. At this point, insurance is refusing to offer the coverage, stating that Lyme disease treatment is “experimental” and only offering Heather the ability to take oral medication, which her body cannot tolerate. Heather’s doctor is confident that the IV therapy is the best, as the medicine is injected intravenously and goes straight to her bloodstream and brain, where the infections are currently creating the most damage.
Between the out of pocket expense for her IV antibiotics and the need for these hyperbaric dives (at $12,000+), the proposed medical costs facing Heather (currently out of work on disability paid at 60% of normal wages) are mounting each day. Considering her medical costs coupled with her reduced pay and continuing to raise a family with three children, I put together this page and fund to alleviate some of the medical expense Heather is currently facing so that she can focus on healing and getting better by receiving the proper treatment and not worrying about the medical costs looming in her future.
Beginning in August 2014, Heather began having extreme neurological issues accompanied by constant muscle and joint aches and pains; numbness in her arms, legs and face; forgetfulness; vision issues and sensitivity to foods that never existed before. The chronic fatigue was intense and Heather bounced back and forth between insomnia (sleeping approximately 2 hours a night) to wanting to sleep an entire day at a time. With the symptoms described above, coupled with sensitivity to heat and cold, nausea, tension headaches and increased anxiety, Heather sought treatment with her doctor. Over the next 18 months, she was referred to several doctors and specialists, all who believed and treated her as though she had fibromyalgia. Insistent that this was not the proper diagnosis, she went on a personal quest to find a doctor who could properly assess all of her symptoms and determine what was causing her debilitating pain and neurological issues. After seeing a rheumatologist, acupuncturist, physical therapist, endocrinologist and sitting on the waiting list for several gastrointestinal doctors, the diagnosis and medicine offered to Heather weren’t working. In November 2015, Heather suffered a series of several small seizures, which indicated that her symptoms were becoming more extreme and serious. Venturing out of her HMO network and into the cash paying world and racking up medical debt through MRIs, CT scans and the like, Heather found an amazing neurologist to help her combat the war inside her body that was now affecting her brain. At this point, Heather had not received a diagnosis of Lyme disease and it was believed that she was a newly diagnosed epileptic. On medication to control the seizures, the tail end of 2015 and the early part of 2016 seemed to show some improvement in her health condition, minus the chronic food allergens and subsequent pain from ingesting the “wrong” foods. However, at some point in late January/early February 2016, Heather’s health took a rapid decline. Being on a restricted food diet anyway due to allergens, the “safe” foods that Heather had been able to eat without issue suddenly became problem foods and her ability to nourish her body became more and more dire. Between nausea and vomiting, Heather lost a significant amount of weight in a short period of time. Her thoughts and memory became disjointed. Heather had seen so many doctors that told her that she was “crazy” and “depressed” and that she needed to take anti-depressants and move on with life. But this was her life; constantly wondering how to find proper medical care to stop the slipping of the memory, thoughts, ideas and cognitive ability to communicate, read and write. It was all becoming so much work. She wondered why she couldn’t remember how to get to certain places she had been before; why her son’s teacher’s name couldn’t be recalled; why every single thought was so difficult to muster up; and why her communication skills were declining. On February 25, 2016, Heather met with a Lyme disease specialist after performing intense searching on the internet to attempt to find some resolve. That same day, using blood work and tests that had been done over a series of months, Heather was diagnosed with Stage 3 (late stage) Lyme disease. At this point, the disease and its co-infections had become so progressed that they are now affecting Heather’s brain and causing the epileptic seizures and cognitive decline. Two weeks after her diagnosis, Heather was hospitalized for 10 days and eventually had her gallbladder and appendix removed because the infections in her stomach created by the Lyme had robbed those organs of the oxygen they needed to survive. Since that time, the focus has been on creating a hospitable environment within her gut to tolerate food and medicine needed for her continued treatment. Over the last three and a half months, Heather’s doctor has been attempting to create an environment in her body that is able to sustain an intense 90-day round of antibiotics. With the weakened immune system due to autoimmune diseases in Heather’s body, it was imperative to build up her gut and stomach to be tolerant.
In May, after several back-to-back doctor appointments where Heather reported migraines, extreme vertigo, fatigue, forgetfulness, memory issues, inability to remember names or faces, inability to grasp words or communicate without long pauses in conversation to recall specific words or ideas, and just a very real and noticeable slowdown in processing information, Heather underwent a Brain Health Evaluation (BHE) under the direction of her functional medicine doctor and a neurologist not associated with her Lyme disease treatment. The BHE revealed that Heather’s brain has suffered a tremendous blow from the infections caused by Lyme and that her function of the brain is approximately 30% of “normal.” The ability to process information and understand word meanings and logic were less than 19%.
The recommended treatment from the results of the BHE are a series of 40 hyperbaric dives in an oxygen chamber. These dives immerse the patient in oxygen for 90 minutes at a time and help to regenerate brain cells at an accelerated rate. Given that Heather’s cognitive brain health has rapidly declined over the last few months, her doctor recommended a series of 40 treatments immediately. The infection in her brain is still raging and Heather’s ability to maintain the cognitive attention and memory is imperative.
Today, Heather is on a powerful series of medications and supplements that have her consuming approximately 50 pills a day, all timed out perfectly to avoid counteracting each other. The list of prescriptions to combat all of the issues in her body is ever-growing. She is currently battling her insurance company to assist in the coverage of her in-home IV infusion therapy, which runs $142/day for a minimum of 90 days. At this point, insurance is refusing to offer the coverage, stating that Lyme disease treatment is “experimental” and only offering Heather the ability to take oral medication, which her body cannot tolerate. Heather’s doctor is confident that the IV therapy is the best, as the medicine is injected intravenously and goes straight to her bloodstream and brain, where the infections are currently creating the most damage.
Between the out of pocket expense for her IV antibiotics and the need for these hyperbaric dives (at $12,000+), the proposed medical costs facing Heather (currently out of work on disability paid at 60% of normal wages) are mounting each day. Considering her medical costs coupled with her reduced pay and continuing to raise a family with three children, I put together this page and fund to alleviate some of the medical expense Heather is currently facing so that she can focus on healing and getting better by receiving the proper treatment and not worrying about the medical costs looming in her future.
Organizer and beneficiary
Heather Nicole Johnson
Beneficiary