Treatment for Laura Belford
Donation protected
This is hard for me to do. My wife and I are very private people and don’t like to share personal family or financial matters in public. This is bigger than us; so we have decided to share our story in hopes that we can get help.
For those of you who don’t know, it has been a very difficult year for our family. In addition to the ongoing pandemic, about a year ago(November 2019) Laura started experiencing numbness, weakness, and pain in her upper and lower extremities. At first, she thought it was just fatigue from being on her feet all day working, and she did not worry too much about it. However, as the weeks passed, the symptoms in her arms and legs continued to worsen . Laura began to have uncontrollable falls without warning. The falls began to happen several times a week. In March of 2020 we sought medical assistance, first from Laura’s primary care physician, and several visits to the emergency room. The visits to her Primary Care Physician, the Emergency Room, and additional specialist continued for several months yielding no results. The doctors ran multiple tests that were unsuccessful in determining what was causing Laura’s issues. She continued to decline day by day to the point where she could not physically get out of bed and had to have assistance with her most basics needs. Laura became bedridden in June 2020. Her arm and legs began experiencing a loss of control and constant driving pain and numbness that would not relent. As each day passed, the pain increased in Laura's arms and legs. She was in severe agony without any relief from the pain. Laura began losing weight at an alarming rate. In August 2020, Laura was admitted to Lakeland Regional Hospital for 4 weeks where they performed multiple scans, blood work, and performed numerous batteries of tests by Neurologist, Pulmonologist, Oncologist, and Infectious Disease doctors. All tests were negative. The team of doctors was unable to give a diagnosis or find any relief for Laura's pain. I have been married to Laura for 19 years, through three natural child births without epidurals, Laura has never cried or complained about pain. She is in tears virtually daily now because the pain is so overwhelming and constant.
With no answers from our local doctors, Laura and I began reading about her symptoms, speaking with doctors, and friends and stumbled across Neurological Lyme Disease. Laura remembered being bitten by a tick on Thanksgiving (2019) while visiting a family property in a wooded area. Even though Laura had tested negative for Lyme Disease on the standard Lyme test, we ordered a Western Blot test from the renowned California lab Ingenex. The test returned positive for the Lyme Disease co-infection for Bartonella. When we showed the results to Laura’s local doctors, the results were dismissed. The common statement was “Lyme Disease does not present this way.” We were told that most likely Laura had an extremely rare neuronopathy that was causing her immune system to attack her Ganglion Nerve Block. We were told this was most certainly not Lyme Disease. With this, we set off to the renowned Mayo Clinic in Rochester, Minnesota as well as The Jemsek Specialty Clinic in Washington DC that specializes in Lyme Disease. Unfortunately, even with all the new test results, and an additional weeks’ worth of testing 6-8 hours a day, nerve biopsies, 2 spinal taps, EMG, sweat tests, nerve conduction tests, blood tests, etc. the Mayo Clinic could not identify the source of the issue. Again, the conclusion was that Laura had a rare neuronopathy that they had rarely, if ever seen. It was not an easily diagnosable issue and there was no treatment.
With that disheartening information, we decided to travel to the Jemsek Specialty Clinic in Washington, DC. Once there we met with Dr. Jemsek, who examined Laura and diagnosed her with Neurological Lyme Disease. He stated he had patients in the past who presented the symptoms that Laura had. He was quite certain he could help Laura. Dr. Jemsek proceeded to explain to us why Lyme Disease is not really understood or accepted by the modern medical community and largely disregarded as a diagnosis. After beginning an initial treatment Laura’s body showed some improvement. She began to feel less pain and gain some weight back. After deciding to pursue the Treatment at the Jemsek Speciality Clinic, we learned that Lyme Disease diagnosis and its treatments were not covered at all by our insurance. Once begun, the treatments could take two full years or longer to complete and allow Laura to experience a remission of the extreme daily pain.
Recently Laura’s job was outsourced, and because of her physical condition she is unable to work any longer. I continue to work full-time to support the family. Laura had seen some improvement while being treated by the Jemsek Clinic, but that is starting to dissipate. She needs to go back and begin the full program in order to see if there is any hope to cure her. I will make every sacrifice I need to in order to pay for the treatment, but in reality I just can’t do it alone and take care of the family's needs. The treatments for Laura will cost approximately $70,000 and again insurance will not cover any of it because it is not standard medical treatment.
This treatment is our only hope at this point, after exploring every option available in traditional medicine. We have set up a GO FUND ME account to try and get Laura the treatment she needs. No donation amount is too small and every donation will be greatly appreciated from the bottom of our hearts. Thank you and please keep our family in your prayers .
Laura and Brian
For those of you who don’t know, it has been a very difficult year for our family. In addition to the ongoing pandemic, about a year ago(November 2019) Laura started experiencing numbness, weakness, and pain in her upper and lower extremities. At first, she thought it was just fatigue from being on her feet all day working, and she did not worry too much about it. However, as the weeks passed, the symptoms in her arms and legs continued to worsen . Laura began to have uncontrollable falls without warning. The falls began to happen several times a week. In March of 2020 we sought medical assistance, first from Laura’s primary care physician, and several visits to the emergency room. The visits to her Primary Care Physician, the Emergency Room, and additional specialist continued for several months yielding no results. The doctors ran multiple tests that were unsuccessful in determining what was causing Laura’s issues. She continued to decline day by day to the point where she could not physically get out of bed and had to have assistance with her most basics needs. Laura became bedridden in June 2020. Her arm and legs began experiencing a loss of control and constant driving pain and numbness that would not relent. As each day passed, the pain increased in Laura's arms and legs. She was in severe agony without any relief from the pain. Laura began losing weight at an alarming rate. In August 2020, Laura was admitted to Lakeland Regional Hospital for 4 weeks where they performed multiple scans, blood work, and performed numerous batteries of tests by Neurologist, Pulmonologist, Oncologist, and Infectious Disease doctors. All tests were negative. The team of doctors was unable to give a diagnosis or find any relief for Laura's pain. I have been married to Laura for 19 years, through three natural child births without epidurals, Laura has never cried or complained about pain. She is in tears virtually daily now because the pain is so overwhelming and constant.
With no answers from our local doctors, Laura and I began reading about her symptoms, speaking with doctors, and friends and stumbled across Neurological Lyme Disease. Laura remembered being bitten by a tick on Thanksgiving (2019) while visiting a family property in a wooded area. Even though Laura had tested negative for Lyme Disease on the standard Lyme test, we ordered a Western Blot test from the renowned California lab Ingenex. The test returned positive for the Lyme Disease co-infection for Bartonella. When we showed the results to Laura’s local doctors, the results were dismissed. The common statement was “Lyme Disease does not present this way.” We were told that most likely Laura had an extremely rare neuronopathy that was causing her immune system to attack her Ganglion Nerve Block. We were told this was most certainly not Lyme Disease. With this, we set off to the renowned Mayo Clinic in Rochester, Minnesota as well as The Jemsek Specialty Clinic in Washington DC that specializes in Lyme Disease. Unfortunately, even with all the new test results, and an additional weeks’ worth of testing 6-8 hours a day, nerve biopsies, 2 spinal taps, EMG, sweat tests, nerve conduction tests, blood tests, etc. the Mayo Clinic could not identify the source of the issue. Again, the conclusion was that Laura had a rare neuronopathy that they had rarely, if ever seen. It was not an easily diagnosable issue and there was no treatment.
With that disheartening information, we decided to travel to the Jemsek Specialty Clinic in Washington, DC. Once there we met with Dr. Jemsek, who examined Laura and diagnosed her with Neurological Lyme Disease. He stated he had patients in the past who presented the symptoms that Laura had. He was quite certain he could help Laura. Dr. Jemsek proceeded to explain to us why Lyme Disease is not really understood or accepted by the modern medical community and largely disregarded as a diagnosis. After beginning an initial treatment Laura’s body showed some improvement. She began to feel less pain and gain some weight back. After deciding to pursue the Treatment at the Jemsek Speciality Clinic, we learned that Lyme Disease diagnosis and its treatments were not covered at all by our insurance. Once begun, the treatments could take two full years or longer to complete and allow Laura to experience a remission of the extreme daily pain.
Recently Laura’s job was outsourced, and because of her physical condition she is unable to work any longer. I continue to work full-time to support the family. Laura had seen some improvement while being treated by the Jemsek Clinic, but that is starting to dissipate. She needs to go back and begin the full program in order to see if there is any hope to cure her. I will make every sacrifice I need to in order to pay for the treatment, but in reality I just can’t do it alone and take care of the family's needs. The treatments for Laura will cost approximately $70,000 and again insurance will not cover any of it because it is not standard medical treatment.
This treatment is our only hope at this point, after exploring every option available in traditional medicine. We have set up a GO FUND ME account to try and get Laura the treatment she needs. No donation amount is too small and every donation will be greatly appreciated from the bottom of our hearts. Thank you and please keep our family in your prayers .
Laura and Brian
Organizer
Brian Belford
Organizer
Lakeland, FL