To TBDWG: Pay attention to gestational Lyme and new ICD-11 codes
Kristina Bauer gave the following public comments at the July 19 meeting of the federal Tick-Borne Disease Working Group.
I’m Kristina Bauer, Executive Director of Texas Lyme Alliance, mom of four gestational Lyme kids. This is my fourth opportunity to address Congress and provide public comments to the TBDWG, thank you for giving patients and advocates a voice!
I have been advocating for gestational and pediatric Lyme over five years, yet still don’t see treatment guidelines updated to avoid this health risk. I went 32 years misdiagnosed as autoimmune diseases and hearing, “I don’t know how to help you.”
My family is finally in remission after 10 years of treating by using immune therapies and integrative medicine, spending too much money. I also serve on the board of Mothers Against Lyme, and am the Texas state captain for Center for Lyme Action.
* The Affordable Care Act established that 90 days of antibiotic treatments, repeated as necessary, are essential health benefits for cases of persistent and recurring Lyme infection.
* Dr Bruce Patterson’s work from Incelldx on chronic inflammation has inferred Lyme persists, but others may need treatment for high inflammation. Separating these two can help patients identify what is going on and reduce symptoms to improve quality of life.
* I invite the listeners to view my YouTube channel at Kristina Bauer that contains interviews regarding how PTLDS is being expressly used to deny treatment for ongoing infection.
* Human rights violations have been documented to include denying the right to the highest attainable standard of health, personal security, right to life and the protections against torture and cruel, inhuman and degrading treatment.
* Doctors who take an oath but don’t understand Lyme, do nothing for patients, therefore in fact do harm. Improving education to all medical providers would help improve a patient’s quality of life.
ICD-11 Diagnostic Codes
The World Health Organization’s ICD-11 now recognizes a significant number of Lyme complications which can become chronic, cause severe disability, and in some cases, result in death.
The new codes now include: 1C1G.10 Lyme Neuroborreliosis. 1C1G.11 Lyme Carditis. 1C1G.12 Ophthalmic Lyme borreliosis. 1C1G.1Y Other specified disseminated Lyme borreliosis. 1C1GY Other specified Lyme borreliosis. 6D85.Y Dementia due to Lyme Disease. 8A45.0Y Central Nervous System demyelination due to Lyme borreliosis and WHO recommended that “KA6Y Other specified infections of the fetus or newborn” be coordinated with “XN13C Borrelia Burgdorferi” to represent congenital Lyme.
Thank you to all TBDWG members. To all the patients, things ARE getting better, keep your chin up and never give up!
View a recording of Kristina’s comments here:
Kristina Bauer can be contacted via her website, TXLymeAlliance.org.