Help Ashley fight Lyme disease

Help us Help Ashley!

 

Ashley I, our cousin and niece is battling Lyme Disease. For those that don’t know, Ashley was officially diagnosed with late-Stage Lyme Disease in August of 2017.  Since then she has been clinically diagnosed with the tick borne co-infections Bartonella and Babesia.  Since starting treatment it has been a tough battle for her and her family.  Living long term with a pic line has its challenges and mounting costs along with weekly visits to the infusion center and at home IV’s 6 days a week.  Ashley has gone through Week 16 of IV treatments. The unfortunate news is insurance isn’t covering any of her treatments moving forward (thousands in monthly costs).  The good news is she is seeing small improvements in her vitals and heart every month, so she has vowed to keep going without medical insurance assistance and we are vowing to help her do just that!

Neurological/Late Stage Lyme Disease effects nearly every part of the body including the heart/arteries, brain, nervous system, bladder, eyes/ears, muscles, joints, bone marrow, ligaments, thyroid, and other organs. Lyme treatment can be very difficult to go through because it is hard on the body due to The Herxheimer Reaction, which is an immune system reaction to the toxins (endotoxins) that are released when large amounts of pathogens are being killed off.

As a result of Lyme going untreated for so long, Ashley was diagnosed with Systemic Arthritis, and Dysautonomia including POTS (postural orthostatic tachycardia syndrome). This means the autonomic nervous system which controls “automatic” processes in the body such as heart rate, breathing (oxygen saturation) temperature, and swallowing has been damaged and doesn’t work properly. The IV treatment is able to reach the nervous system and brain and hopefully over time continue to improve this.

The Lyme disease also caused Ashley to develop a very rare condition called Eagles Syndrome that has left two ligaments, one on each side of her neck calcified (hardened) causing severe daily pain, mobility and structural issues. They have seen multiple neurosurgeons at the best hospitals in Chicago who all have said the surgery to repair this is too risky and not an option at this time with the proximity to the carotid artery and high risk of infection. The hope is once the Lyme is controlled the calcification process will stop and other options can be explored.

Expenses of Lyme Disease Treatment:
-Out-of-pocket costs for daily IV antibiotic infusions, picc line supplies and maintenance, and hydration infusions.
-Ashley needs 2-3 manual physical therapy sessions a week for pain management (around 150/year). Insurance has a cap on how many sessions they will cover.
-Ashley and Nick travel to Wisconsin every 3 weeks to see a Lyme literate specialist because there is only one other Lyme disease doctor in Illinois who treats late stage neurological Lyme.
-Ashley sees many specialists including a neurologist, cardiologist, pain management specialist, physical therapist and primary care doctor to manage the symptoms and other diagnoses as a result of Lyme disease.
-There are around 20 different prescription medications, herbs and supplements Ashley has to take and purchase each month.
-Weekly blood tests/labs, and other scans such as MRIs, CTs, X-Rays, EKGs are needed throughout treatment as symptoms arise and as part of having a central line.
-Transportation to and from physical therapy and doctors appointments on days Ashley is unable to drive.
 

Please help us take a little pressure and stress off of this young family’s plate by offering your support.  Every little bit helps.  It takes a Village. 

 

Love and Peace – Angel Latz, Terri Karls and Anita Tucker

 

Visit GLA.org to learn more about Lyme disease 

Additionally, please read the bill below for the proposed Illinois law (HB0889) that will mandate insurance companies cover long-term Lyme disease treatment in IL.
Read about the bill here: http://www.ilga.gov/legislation/101/HB/10100HB0889.htm