Kristofferson's medical history should be taught to residents and medical students. What I will always admire Kristofferson for is sharing his important story of how he was multiply misdiagnosed and harmed by it.
Thanks for highlighting Kristofferson’s story. As a late stage lyme warrior (25 years misdiagnosed / undiagnosed) and a parent/ caregiver to a Lyme warrior I have lived this story for half my life. I’m an advocate with the Center for Lyme Action and speak with other patients and caregivers all over the world to help them unravel the mysteries of Lyme. As you said, Lyme is NOT a rare disease and it should not be so hard.
Tracy, thank you for your comment. I was lucky that I was quickly diagnosed for Lyme disease twice. In our last non-city environment home, everyone on our block got Lyme disease at least once. And it presented in the most bizarre array of misdiagnoses before properly getting recognized and treated. It was also an important factor in my son's 8+ year long diagnostic odyssey that nearly killed him at 15. Thank you for the work you do for Lyme patients. I'm unfamiliar with the organization you mentioned so I'm going to check them out. I've worked with one of the others.
Helen, I’m sorry to hear about your Sons odyssey. My son’s 7 year battle nearly killed him as well and left me with little faith in the healthcare system. So happy to have found your Substack and your work through the Midstack group. There are many wonderful Lyme organizations and I have been involved with others as well. The CLA is strictly focused on lobbying for more federal funds for tick borne research. They had really made an impact the last few years. It’s so hard to see that work be negated and the money cut along with other important research due to the current administration.
I agree. It's difficult to watch as all of the patient-led advocacy groups' efforts have been harmed by this administration's cuts in federal funding for public health, healthcare, and science and medical research. Plus the loss of the Lyme Disease Association in December. It's going to be challenging for all of us. That's one of the reasons why I'm offering this serialized book free.
Thanks for highlighting Kristofferson’s story. As a late stage lyme warrior (25 years misdiagnosed / undiagnosed) and a parent/ caregiver to a Lyme warrior I have lived this story for half my life. I’m an advocate with the Center for Lyme Action and speak with other patients and caregivers all over the world to help them unravel the mysteries of Lyme. As you said, Lyme is NOT a rare disease and it should not be so hard.
Tracy, thank you for your comment. I was lucky that I was quickly diagnosed for Lyme disease twice. In our last non-city environment home, everyone on our block got Lyme disease at least once. And it presented in the most bizarre array of misdiagnoses before properly getting recognized and treated. It was also an important factor in my son's 8+ year long diagnostic odyssey that nearly killed him at 15. Thank you for the work you do for Lyme patients. I'm unfamiliar with the organization you mentioned so I'm going to check them out. I've worked with one of the others.
Helen, I’m sorry to hear about your Sons odyssey. My son’s 7 year battle nearly killed him as well and left me with little faith in the healthcare system. So happy to have found your Substack and your work through the Midstack group. There are many wonderful Lyme organizations and I have been involved with others as well. The CLA is strictly focused on lobbying for more federal funds for tick borne research. They had really made an impact the last few years. It’s so hard to see that work be negated and the money cut along with other important research due to the current administration.
I agree. It's difficult to watch as all of the patient-led advocacy groups' efforts have been harmed by this administration's cuts in federal funding for public health, healthcare, and science and medical research. Plus the loss of the Lyme Disease Association in December. It's going to be challenging for all of us. That's one of the reasons why I'm offering this serialized book free.
I look forward to reading it!
Great piece, Helene!