Taking the Sour Out of Lyme
Donation protected
My 2 daughters, husband, and I live in Colorado. My youngest daughter is 11 years old. My older daughter is 13. All 3 of us have recently been diagnosed with Chronic Lyme Disease (Borrelia Burgdorferi), Babesia, Bartonella, and Rickettsia. All are tick borne co-infections that go along with Lyme.
Lyme Disease is typically transmitted by the bite of a tick. It releases the bacteria Borrelia Burgdorferi into your system. It will invade the immune system, causing immune supression over time. The disease is prevalent throughout the United States and the entire world. Fewer than 50% of people recall being bitten by a tick, or seeing the typical "bulls eye rash". Most cases of chronic Lyme Disease require an extended course of antibiotic therapy to achieve symptomatic relief. Ticks also carry Babesia, Bartonella, Erlichia, Mycoplasma, and other pathogens - all which wreak havoc on the body, immune system, and organ function. Babesia is the first cousin to Malaria. Like Syphillis in the 19th century, Lyme Disease has been called the "Great Imitator", as it is often misdiagnosed as Multiple Sclerosis, Fibromyalgia, Chronic Fatigue Syndrome, and a whole host of other neurological and immunological diseases. 40% of Lyme patients end up with long term health problems that affect every system in the body, if not caught and treated early.
In our case, it is thought that my girls caught it congenitally. My oldest daughter, thankfully, is asymptomatic, as she has an adequately functioning immune system to fight the infections off. My youngest and I are being treated by a wonderful LLMD (Lyme Literate Medical Doctor). We have undergone extensive visits to specialists, hospitals, and doctors. Each visit with the LLMD is $400/hour. These visits are not covered by insurance due to the controversy of this epidemic disease that is not recognized by the Center for Disease Control. Babesia and Bartonella are our biggest issues. I am on an anti-malarial drug for the Babesia to the tune of $900/bottle every 20 days. Fortunately, our insurance does pay for most of this cost. Between the two of us, we are on many antibiotics, antimalarials, antifungals, homeopathic remedies, Bartonella treatments, and supplements.
At 1 year old my youngest began experiencing monthly cycles of high fevers (104-106) lasting 4-6 days, accompanied by flushing and sweats, typically preceded by headaches and fatigue, and occasionally accompanied by joint pains. These cycles continued until 5 years old, and they stopped after undergoing a tonsillectomy. Soon thereafter, "B" began experiencing intrusive, perseverating thoughts of violent nature to herself and others. In addition, she experienced anxiety, irritability with rage attacks, and physical symptoms including fatigue, night sweats, air hunger, joint pains, rashes, and sleep issues as well as cognitive decline. Our psychiatrist was the one who suspected Lyme and referred us to the Lyme doctor. He prescribed several psychotropic agents which yielded temporary benefit. She was prescribed prednisone for 10 days by a different physician, which resulted in considerable worsening of her symptoms. The fatigue and intrusive thoughts persist. It has affected every aspect of her life from being able to go camping, to making friends, to riding her bike, to going to public school. We are, however, seeing gradual improvements.
She has been diagnosed as having Hypogammaglobulinemia (Immune disorder characterized by a reduction in all types of gamma globulins, including antibodies that help fight infection), recently Diabetes Insipidus (an uncommon disorder that causes an imbalance of water in the body), Neuroborreliosis (disorder of the central nervous system caused by infection with a spirochete of the genus Borrelia Burgdorferi), Babesiosis, possible Rickettsiae infection, and suspect for seronegative Bartonella. Hypogammaglobulinemia complicates the serologic diagnosis because of her deficiency in making antibodies, and also complicates her treatment because of her immune impairment.
Along with the monthly LLMD appointments and daily, medication routine, she has now been seeing two immunologists. She was announced as a candidate for IVIG today due to her Hypogammaglobulinemia. IVIG (therapy with antibody (immunoglobulin) mixtures, given via intravenous, subcutaneous, or intramuscular routes of administration, used to treat or prevent a variety of diseases). The main goal will be to decrease overall brain inflammation and boost her immune system in order to fight these infections off and keep them suppressed. Essentially, to retrain her immune system. She will receive day long infusions every 3 weeks for at least a year. Although acting as an anti-inflammatory and immune booster, these infusions do not come without potential risks. The main one being aseptic meningitis (which is very rare).
Insurance may or may not pay for these infusions, but most likely will pay for much of the cost due to her low immune system function. We are not sure yet.
These medical issues have been a serious financial burden on our family, since I, too, have started treatment for tick-borne infections. She has not been able to attend school due to fatigue and debilitating anxiety. I have quit my job as a therapist to be with her and perform home schooling. Although we have thoroughly enjoyed homeschooling, this makes for a one income family with significant medical expenses.
We have been going through this journey for years. We have waited until the very last minute to reach out for financial assistance. We applied for a grant last month and were recently denied due to a "record amount of applicants" this year. We will continue to request grant funding to aid in this expensive journey.
Many people are bitten by a tick, diagnosed with Lyme, given a short bout of antibiotics and happily move on with their lives. This is not the case for many though. It can be debilitating. It can be fatal. We knew from very early on, something was not right. We have found our answer, and we are finally seeing the light at the end of the tunnel. We have HOPE.
We are humbly asking for financial assistance to help pay for the LLMD appointments, infusion costs, and myriad of daily medications. From the bottom of our hearts, we thank you.
INTERNATIONAL LYME AND ASSOCIATED DISEASES SOCIETY
IVIG
Lyme Disease is typically transmitted by the bite of a tick. It releases the bacteria Borrelia Burgdorferi into your system. It will invade the immune system, causing immune supression over time. The disease is prevalent throughout the United States and the entire world. Fewer than 50% of people recall being bitten by a tick, or seeing the typical "bulls eye rash". Most cases of chronic Lyme Disease require an extended course of antibiotic therapy to achieve symptomatic relief. Ticks also carry Babesia, Bartonella, Erlichia, Mycoplasma, and other pathogens - all which wreak havoc on the body, immune system, and organ function. Babesia is the first cousin to Malaria. Like Syphillis in the 19th century, Lyme Disease has been called the "Great Imitator", as it is often misdiagnosed as Multiple Sclerosis, Fibromyalgia, Chronic Fatigue Syndrome, and a whole host of other neurological and immunological diseases. 40% of Lyme patients end up with long term health problems that affect every system in the body, if not caught and treated early.
In our case, it is thought that my girls caught it congenitally. My oldest daughter, thankfully, is asymptomatic, as she has an adequately functioning immune system to fight the infections off. My youngest and I are being treated by a wonderful LLMD (Lyme Literate Medical Doctor). We have undergone extensive visits to specialists, hospitals, and doctors. Each visit with the LLMD is $400/hour. These visits are not covered by insurance due to the controversy of this epidemic disease that is not recognized by the Center for Disease Control. Babesia and Bartonella are our biggest issues. I am on an anti-malarial drug for the Babesia to the tune of $900/bottle every 20 days. Fortunately, our insurance does pay for most of this cost. Between the two of us, we are on many antibiotics, antimalarials, antifungals, homeopathic remedies, Bartonella treatments, and supplements.
At 1 year old my youngest began experiencing monthly cycles of high fevers (104-106) lasting 4-6 days, accompanied by flushing and sweats, typically preceded by headaches and fatigue, and occasionally accompanied by joint pains. These cycles continued until 5 years old, and they stopped after undergoing a tonsillectomy. Soon thereafter, "B" began experiencing intrusive, perseverating thoughts of violent nature to herself and others. In addition, she experienced anxiety, irritability with rage attacks, and physical symptoms including fatigue, night sweats, air hunger, joint pains, rashes, and sleep issues as well as cognitive decline. Our psychiatrist was the one who suspected Lyme and referred us to the Lyme doctor. He prescribed several psychotropic agents which yielded temporary benefit. She was prescribed prednisone for 10 days by a different physician, which resulted in considerable worsening of her symptoms. The fatigue and intrusive thoughts persist. It has affected every aspect of her life from being able to go camping, to making friends, to riding her bike, to going to public school. We are, however, seeing gradual improvements.
She has been diagnosed as having Hypogammaglobulinemia (Immune disorder characterized by a reduction in all types of gamma globulins, including antibodies that help fight infection), recently Diabetes Insipidus (an uncommon disorder that causes an imbalance of water in the body), Neuroborreliosis (disorder of the central nervous system caused by infection with a spirochete of the genus Borrelia Burgdorferi), Babesiosis, possible Rickettsiae infection, and suspect for seronegative Bartonella. Hypogammaglobulinemia complicates the serologic diagnosis because of her deficiency in making antibodies, and also complicates her treatment because of her immune impairment.
Along with the monthly LLMD appointments and daily, medication routine, she has now been seeing two immunologists. She was announced as a candidate for IVIG today due to her Hypogammaglobulinemia. IVIG (therapy with antibody (immunoglobulin) mixtures, given via intravenous, subcutaneous, or intramuscular routes of administration, used to treat or prevent a variety of diseases). The main goal will be to decrease overall brain inflammation and boost her immune system in order to fight these infections off and keep them suppressed. Essentially, to retrain her immune system. She will receive day long infusions every 3 weeks for at least a year. Although acting as an anti-inflammatory and immune booster, these infusions do not come without potential risks. The main one being aseptic meningitis (which is very rare).
Insurance may or may not pay for these infusions, but most likely will pay for much of the cost due to her low immune system function. We are not sure yet.
These medical issues have been a serious financial burden on our family, since I, too, have started treatment for tick-borne infections. She has not been able to attend school due to fatigue and debilitating anxiety. I have quit my job as a therapist to be with her and perform home schooling. Although we have thoroughly enjoyed homeschooling, this makes for a one income family with significant medical expenses.
We have been going through this journey for years. We have waited until the very last minute to reach out for financial assistance. We applied for a grant last month and were recently denied due to a "record amount of applicants" this year. We will continue to request grant funding to aid in this expensive journey.
Many people are bitten by a tick, diagnosed with Lyme, given a short bout of antibiotics and happily move on with their lives. This is not the case for many though. It can be debilitating. It can be fatal. We knew from very early on, something was not right. We have found our answer, and we are finally seeing the light at the end of the tunnel. We have HOPE.
We are humbly asking for financial assistance to help pay for the LLMD appointments, infusion costs, and myriad of daily medications. From the bottom of our hearts, we thank you.
INTERNATIONAL LYME AND ASSOCIATED DISEASES SOCIETY
IVIG
Organizer
Cindy Hailey
Organizer
Centennial, CO
