Scott's Critical Medical Fund
Donation protected
My name is Cyndi and I'm writing to share my husband's story of having a chronic, debilitating and sometimes deadly disease. My husband, Scott has a progressive form of Lyme's disease that is often misdiagnosed. Scott is 44 years old and rapidly declined from working 12 hour days 6 days a week to not being able to stand for more than 10 or 15 minutes at a time. We have 2 young children, Grant 7 and Madelyn 3.
Some of Scott's symptoms include: extreme pain throughout his entire body, debilitating pain in all of his joints and feet, extreme muscle weakness, nerve pain, rapid deline in vision and memory, dizziness, migraines, episodes of Bell's Palsy, personality changes, unbelievable fatigue, stomach pain and discomfort, breathing problems and insomnia. He also developed 2 blood clots due to the inflammation that Lyme's causes.
In 2012 we began our journey to find an answer, and our search continued for 3 years. Our life dramatically changed as Scott continued to worsen with no hope in sight. Scott was barely able to walk, and the doctors had given up without knowing what was wrong with him. Eventually we found a doctor who discovered that Scott has Lyme's disease along with the co-infections. We were relieved to finally have an answer but our hearts sank because Lyme's can become chronic, debilitating and deadly if not properly treated.
This doctor had Scott try a variety of medications for about 9 months. Unfortunately these did not work and he continued to worsen. Our search began again for a doctor.
In August 2015 we found a clinic that confirmed Scott has Lyme's disease and it's co-infections. They treat patients like Scott who have been suffering for years and have not responded to treatments. In some people these infections do not respond to conventional treatment, and much of the medical community do not recognize them as chronic problems. These patients go completely untreated and continue to decline.
Brain scans showed that Scott has decreased blood perfusion to the brain indicating significant brain involvement. For this reason as well as failure of other treatments, the clinic determined that Scott needs IV antibiotics along with oral antibiotics, antimalarials and antifungals as well as supplements.
IV treatment is for 9 to 12 months followed by 1 to 2 years of recovery and lifelong maintenance. The clinic said he will be extremely sick and will experience worsening of symptoms during treatment. We have not considered this option lightly. We have discussed it, researched it, prayed about it and cried over it trying to figure out how to make this option a reality so Scott will have a chance to be well again.
We knew that without treatment Scott would continue to worsen and could die from this horrible and misunderstood disease. Although very expensive we decided we had no other option but to start treatment. Nothing else had worked and he was declining so badly he was nearly in a wheel chair. For 7 months we followed their first phase of treatment which focused on treating his pain, insomnia and supportive therapies. In March 2016 we started IV treatment. He had a central line placed and we do the infusions at home. It has been an unbelievably exhausting experience for all of us. Scott is in so much pain and is extremely sick. Some days we struggle to just get through the day.
I was not able to get our story out earlier because I have been fighting extreme depression and exhaustion myself. I am trying to be a strong support for my husband and family and be as positive as I can. I am humbly asking for your help. We are faced with $78,000 which includes oral and IV treatment, procedures, monthly physician visits at the clinic, supplies and recommended supplements.
We desperately need Scott back in our lives. Our daughter has never know her daddy to be well. Our son says this prayer every night: "Dear God, thank you for all of our blessings. Thank you for our friends and family. And God please, please, please help daddy get better. He is really sick and we need him." This is a heartfelt prayer from a little boy who wants his daddy to be well again. Thank you so much for any donation and prayers for my husband and our family. We will be forever grateful.
Some of Scott's symptoms include: extreme pain throughout his entire body, debilitating pain in all of his joints and feet, extreme muscle weakness, nerve pain, rapid deline in vision and memory, dizziness, migraines, episodes of Bell's Palsy, personality changes, unbelievable fatigue, stomach pain and discomfort, breathing problems and insomnia. He also developed 2 blood clots due to the inflammation that Lyme's causes.
In 2012 we began our journey to find an answer, and our search continued for 3 years. Our life dramatically changed as Scott continued to worsen with no hope in sight. Scott was barely able to walk, and the doctors had given up without knowing what was wrong with him. Eventually we found a doctor who discovered that Scott has Lyme's disease along with the co-infections. We were relieved to finally have an answer but our hearts sank because Lyme's can become chronic, debilitating and deadly if not properly treated.
This doctor had Scott try a variety of medications for about 9 months. Unfortunately these did not work and he continued to worsen. Our search began again for a doctor.
In August 2015 we found a clinic that confirmed Scott has Lyme's disease and it's co-infections. They treat patients like Scott who have been suffering for years and have not responded to treatments. In some people these infections do not respond to conventional treatment, and much of the medical community do not recognize them as chronic problems. These patients go completely untreated and continue to decline.
Brain scans showed that Scott has decreased blood perfusion to the brain indicating significant brain involvement. For this reason as well as failure of other treatments, the clinic determined that Scott needs IV antibiotics along with oral antibiotics, antimalarials and antifungals as well as supplements.
IV treatment is for 9 to 12 months followed by 1 to 2 years of recovery and lifelong maintenance. The clinic said he will be extremely sick and will experience worsening of symptoms during treatment. We have not considered this option lightly. We have discussed it, researched it, prayed about it and cried over it trying to figure out how to make this option a reality so Scott will have a chance to be well again.
We knew that without treatment Scott would continue to worsen and could die from this horrible and misunderstood disease. Although very expensive we decided we had no other option but to start treatment. Nothing else had worked and he was declining so badly he was nearly in a wheel chair. For 7 months we followed their first phase of treatment which focused on treating his pain, insomnia and supportive therapies. In March 2016 we started IV treatment. He had a central line placed and we do the infusions at home. It has been an unbelievably exhausting experience for all of us. Scott is in so much pain and is extremely sick. Some days we struggle to just get through the day.
I was not able to get our story out earlier because I have been fighting extreme depression and exhaustion myself. I am trying to be a strong support for my husband and family and be as positive as I can. I am humbly asking for your help. We are faced with $78,000 which includes oral and IV treatment, procedures, monthly physician visits at the clinic, supplies and recommended supplements.
We desperately need Scott back in our lives. Our daughter has never know her daddy to be well. Our son says this prayer every night: "Dear God, thank you for all of our blessings. Thank you for our friends and family. And God please, please, please help daddy get better. He is really sick and we need him." This is a heartfelt prayer from a little boy who wants his daddy to be well again. Thank you so much for any donation and prayers for my husband and our family. We will be forever grateful.
Organizer
Scott AndCyndi Garber Friedman
Organizer
Waynesboro, VA
