Lowell family Lyme Disease
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It was Nov 20, 2011 when KyLee first presented Lyme Disease symptoms. Although we wouldn't find out for nearly a full year it was Lyme. KyLee was busily working in the nursery at church as she had done for years. She has a deep love for children and even today volunteers whenever she can both at church and our kids school. We have 3 daughters that are now ages 7, 9 and 11. They are what keeps KyLee fighting though this dreadful disease! Back on that fateful day, KyLee collapsed on the floor, her legs gave out completely and her whole body weakened to the point of not being able to move without tremendous effort. She seemed to be having seizures, but was alert and responsive. I felt helpless, others tried to comfort us...but nothing was helping. KyLee ended up in the ER where they dismissed it as dehydration and nerves. 2 weeks later, the same thing...and back to the ER we went. This time, they said it's in your head and to see a phsychiatrist . Over the next year, we spent countless hours and dollars in and out of the ER and hospital stays and at every doctor imaginable ... from neurologists to phsychiatrists to homeopathic docs from U of M to the University of Chicago and everywhere in between. Despite all the testing ... EEG's, MRI, EMG, heart monotors, blood tests, stool tests, urine tests, too many to list them all!!! ... All anyone could find was she had lots of depression and anxiety. I was even accused of abusing her by one doctor!
Finally KyLee got a diagnosis of Lyme Disease with multiple coinfections of Babesia and Bartonella from a Clinic in Grand Rapids, MI. By this time, the lyme disease had gone systemmic and was in a chronic stage. We don't know exactly when KyLee contracted Lyme disease, but she can remember having ticks often since she grew up on a farm in SW Michigan. Treating lyme disease early on within weeks or months of onset of major symptoms is "easy" ... however, once it reaches this late stage, the lyme buries and hides itself in places that are not treatable by usualy medically proven methods.
They mis-diagnosed as chronic fatigue syndrome, dehydration, various autoimmune disorders and get this … mental instability. The specialists said her symptoms were psychosomatic and she was suffering from severe anxiety and panic disorder and creating symptoms in her head. She was shuffled from doctor to doctor taking numerous medications that did not work with no explanation as to what was causing the symptoms. When a doctor tells you you’re “crazy” and making everything up in your head you actually begin to believe them. They would say to her, “Your test results are normal. You must have anxiety and depression. You need to see a psychiatrist.”
Absolutely mind blowing that the only answers the medical community could give was “you are mental” and “needed to be medicated.” KyLee refused to believe them and kept searching.
KyLee was tested multiple times for Lyme disease and the test results came back negative. The tests used to detect Lyme are 40 year old tests that are outdated and most times inaccurate, yet the medical community chooses to look the other way leaving people misdiagnosed and untreated. If not caught in the early stages the disease travels through the body becoming more difficult to eradicate. The longer the bacteria stays in your system the more widespread it becomes. It burrows into your tissues, cells, organs and attacks every part of the body. The longer Lyme is untreated the more chronic it becomes. KyLee's Lyme decided to primarily attack her heart and brain - giving her extreme heart palpitations and neurological symptoms causing the central nervous system to go haywire...thus her tremors/shakes and siezure like movements.
Literally it affected her entire body, from brain to skin, heart, extreme body pain, eyes, shaking, numbness, tingling, kidneys, liver, pituitary gland, burning neuropathy, vertigo, dizziness, balance issues, weakness in legs and arms, brain fog - searching for words, stuttering and everything else that you can imagine. One of the problems with Lyme disease is that even being sick beyond imagination you look well on the outside, and no indications of infection shows up in regular blood work. That’s why it’s called an invisible disease.
I could go on for hours of the treatments KyLee has endured...all of which seemed to help some, but nothing of any lasting effect. From antibiotics to homeopathic remedies to PEMF machines, IV's, PICC lines, and on and on.... Our insurance coverage of Lyme disease treatment has been leaving us high and dry because insurance doesn't recognize many of the treatment forms for lyme disease. KyLee isn't able to find the help needed with the options available within our healthcare plan network. As a result, most of the medical bills have come out of our pockets and don't even get applied to the maximum out of pocket limit.
Fast forward to 2016: KyLee heard of a person locally who had success treating her lyme disease at a doctor in Idaho who specializes in Lyme disease treatment using magnets and muscle responses (for lack of better terms). It was expensive, but after lots of communication with the other person and the doctor in Idaho, we thought to go for it since nothing else seemed to be working. So in January of 2017, KyLee and a dear friend flew into Spokane WA and drove to Coeur d'Alene Idaho to Dynamic Health for a week of testing and treatments. KyLee returned home, her body weak and weighted down from the treatments, but encouraged by the compassion and hope this doctor gave her! She has a follow up appointment in a couple months.
One of the things the doctor told her was that if she was pregnant when she had lyme disease (whether symptoms were evident or not) she likely passed it to her children through the placenta. He also stated that Lyme disease will spread like an STD, and that her spouse likely has it also. ... SOOOO, we all now need to make the treck to Idaho and be tested and treated.
As you can imagine, the costs of airline flights, hotels, car rental, meals, and the doctor fees adds up to a substantial amount of $. KyLee is on a super strict diet - basically no gluten, dairy, soy, nuts, potato, red meat, corn, sugars of any kind except agave or splenda. Funding this treatment has wreaked havoc on my family financially (not to mention emotionally).
We estimate we will need $5000 per person just for this trip. Anything anyone can give will be greatly appreciated!
Thank you for reading this and remembering us in your prayers.
Ben, KyLee, Morgan, Marissa, Miranda
300,000 new cases of Lyme are diagnosed every year in the United States alone. Thats more cases than HIV and Breast Cancer combined. However, there have only been 3 NIH funded trials to treat Lyme disease over a period of 16 years. For whatever reason, the medical community has decided to brush this disease under the rug and label it taboo. Since the CDC denies the existence of Chronic Lyme Disease, insurance companies are not required to cover costs related to the disease. Patients spend an average of $53,000 per year out of pocket for tests, doctor visits, pharmaceuticals and supplements.
What most people don’t know is that Lyme does not always travel alone. Ticks can carry many bacteria, viruses, fungi and protozoans all at the same time and transmit them in a single bite. Along with Borrelia Burgdorferi, the Lyme bacteria, has many other co-infections. Blood smears indicate that not only is the body fighting Lyme, but is also riddled with a large amount of Babesiosis (a malaria-like parasitic disease). People who have simultaneous infections with both diseases usually experience more severe expression of symptoms and a longer duration of those symptoms. Along with parasites and mold toxicity, the neurological symptoms have become increasingly worse.
If you want to learn more about Lyme, these are two interviews that explain the complexity and detremental effects of the disease.
Lyme & Reason: Dr. Steven Phillips Interview
Ally Hilfiger on Lyme Disease
Finally KyLee got a diagnosis of Lyme Disease with multiple coinfections of Babesia and Bartonella from a Clinic in Grand Rapids, MI. By this time, the lyme disease had gone systemmic and was in a chronic stage. We don't know exactly when KyLee contracted Lyme disease, but she can remember having ticks often since she grew up on a farm in SW Michigan. Treating lyme disease early on within weeks or months of onset of major symptoms is "easy" ... however, once it reaches this late stage, the lyme buries and hides itself in places that are not treatable by usualy medically proven methods.
They mis-diagnosed as chronic fatigue syndrome, dehydration, various autoimmune disorders and get this … mental instability. The specialists said her symptoms were psychosomatic and she was suffering from severe anxiety and panic disorder and creating symptoms in her head. She was shuffled from doctor to doctor taking numerous medications that did not work with no explanation as to what was causing the symptoms. When a doctor tells you you’re “crazy” and making everything up in your head you actually begin to believe them. They would say to her, “Your test results are normal. You must have anxiety and depression. You need to see a psychiatrist.”
Absolutely mind blowing that the only answers the medical community could give was “you are mental” and “needed to be medicated.” KyLee refused to believe them and kept searching.
KyLee was tested multiple times for Lyme disease and the test results came back negative. The tests used to detect Lyme are 40 year old tests that are outdated and most times inaccurate, yet the medical community chooses to look the other way leaving people misdiagnosed and untreated. If not caught in the early stages the disease travels through the body becoming more difficult to eradicate. The longer the bacteria stays in your system the more widespread it becomes. It burrows into your tissues, cells, organs and attacks every part of the body. The longer Lyme is untreated the more chronic it becomes. KyLee's Lyme decided to primarily attack her heart and brain - giving her extreme heart palpitations and neurological symptoms causing the central nervous system to go haywire...thus her tremors/shakes and siezure like movements.
Literally it affected her entire body, from brain to skin, heart, extreme body pain, eyes, shaking, numbness, tingling, kidneys, liver, pituitary gland, burning neuropathy, vertigo, dizziness, balance issues, weakness in legs and arms, brain fog - searching for words, stuttering and everything else that you can imagine. One of the problems with Lyme disease is that even being sick beyond imagination you look well on the outside, and no indications of infection shows up in regular blood work. That’s why it’s called an invisible disease.
I could go on for hours of the treatments KyLee has endured...all of which seemed to help some, but nothing of any lasting effect. From antibiotics to homeopathic remedies to PEMF machines, IV's, PICC lines, and on and on.... Our insurance coverage of Lyme disease treatment has been leaving us high and dry because insurance doesn't recognize many of the treatment forms for lyme disease. KyLee isn't able to find the help needed with the options available within our healthcare plan network. As a result, most of the medical bills have come out of our pockets and don't even get applied to the maximum out of pocket limit.
Fast forward to 2016: KyLee heard of a person locally who had success treating her lyme disease at a doctor in Idaho who specializes in Lyme disease treatment using magnets and muscle responses (for lack of better terms). It was expensive, but after lots of communication with the other person and the doctor in Idaho, we thought to go for it since nothing else seemed to be working. So in January of 2017, KyLee and a dear friend flew into Spokane WA and drove to Coeur d'Alene Idaho to Dynamic Health for a week of testing and treatments. KyLee returned home, her body weak and weighted down from the treatments, but encouraged by the compassion and hope this doctor gave her! She has a follow up appointment in a couple months.
One of the things the doctor told her was that if she was pregnant when she had lyme disease (whether symptoms were evident or not) she likely passed it to her children through the placenta. He also stated that Lyme disease will spread like an STD, and that her spouse likely has it also. ... SOOOO, we all now need to make the treck to Idaho and be tested and treated.
As you can imagine, the costs of airline flights, hotels, car rental, meals, and the doctor fees adds up to a substantial amount of $. KyLee is on a super strict diet - basically no gluten, dairy, soy, nuts, potato, red meat, corn, sugars of any kind except agave or splenda. Funding this treatment has wreaked havoc on my family financially (not to mention emotionally).
We estimate we will need $5000 per person just for this trip. Anything anyone can give will be greatly appreciated!
Thank you for reading this and remembering us in your prayers.
Ben, KyLee, Morgan, Marissa, Miranda
300,000 new cases of Lyme are diagnosed every year in the United States alone. Thats more cases than HIV and Breast Cancer combined. However, there have only been 3 NIH funded trials to treat Lyme disease over a period of 16 years. For whatever reason, the medical community has decided to brush this disease under the rug and label it taboo. Since the CDC denies the existence of Chronic Lyme Disease, insurance companies are not required to cover costs related to the disease. Patients spend an average of $53,000 per year out of pocket for tests, doctor visits, pharmaceuticals and supplements.
What most people don’t know is that Lyme does not always travel alone. Ticks can carry many bacteria, viruses, fungi and protozoans all at the same time and transmit them in a single bite. Along with Borrelia Burgdorferi, the Lyme bacteria, has many other co-infections. Blood smears indicate that not only is the body fighting Lyme, but is also riddled with a large amount of Babesiosis (a malaria-like parasitic disease). People who have simultaneous infections with both diseases usually experience more severe expression of symptoms and a longer duration of those symptoms. Along with parasites and mold toxicity, the neurological symptoms have become increasingly worse.
If you want to learn more about Lyme, these are two interviews that explain the complexity and detremental effects of the disease.
Lyme & Reason: Dr. Steven Phillips Interview
Ally Hilfiger on Lyme Disease
Organizer
Ben Lowell
Organizer
Benton Harbor, MI
