What has happened with A’s case specifically? When she originally contracted the relatively common bacterial infection (Lyme) at a young age, it persisted in her system (most often due to a misdiagnosis or failed trials of traditional antibiotics) and went on to greatly compromise her immune system. Now a wide range of various viruses and bacteria have been able to use A’s body as a host. The first year that these co-infections became a problem was spent navigating a confusing diagnostic process. We then took a more aggressive approach with select chemotherapy drugs at the advice of the physician who was managing her care at the time. The results were noticeable but temporary, however the second full round of treatment failed completely. Ultimately the side effects from some of those toxic drugs were far riskier than any benefit that that they promised. There have been multiple trips to destination centers that have thankfully helped with symptoms, but we have since taken a more integrative approach closer to home. A travels between Orlando and West Palm Beach to work with a very gifted alternative-minded Physician who is now managing her care (collaborating with many others).

The current 6-7mo relapse is Adriana’s eighth over the last five years. Her relapses have lasted anywhere between 3-10 months and each one gets more difficult to recover from given how weakened her systems have become and because the co-infections she is dealing with often mutate to become treatment-resistant. During a relapse, these co-infections ‘flare up’ and present as severe inflammation to her brain and nervous system, not to mention the constant/shooting joint and muscle pain she experiences, meaning she is bed-ridden and needing 24-hour care. She is extraordinarily sensitive to light, sound, and touch which makes interactions painful and subjects her to complete social isolation.

Not surprisingly, Adriana has been unable to attend school or work with any sort of consistency. Employment is impossible given the requirements of her daily maintenance care.

There have been some bright spots, but as anyone dealing with Chronic Lyme knows, the illness is characterized by remissions and relapses. We have been fortunate to work with tremendously intelligent, compassionate and capable doctors, both traditional and alternative, but our current healthcare system does not assist us with navigating care for Chronic Lyme, and almost all of her treatment to date has not been covered by insurance.

She is not alone in this fight – there are currently over 22,000 online fundraisers campaigning for funds to treat Lyme which is now a pandemic (world-wide) disease. Certain regulating organizations like the Infectious Diseases Society of America (IDSA) refuse to recognize that 1/4 of the 300,000 new Lyme cases/year persist to become Chronic Lyme, and the confusion surrounding this chronic illness is leaving the current Chronic Lyme population to advocate for itself. Unfortunately, there is a long road ahead to achieve proper resources for those suffering from the debated diagnosis of Chronic Lyme.

Given her existing condition, all Adriana can handle right now is working to find purpose in life and fighting to get through each day under the care of her family and friends. The cost for her care has been truly catastrophic to her family, but they are systematically making progress at ridding her of each co-infection so that they can reach their ultimate goal of building immunity for remission without relapse. But they need help.

Please help them with the exorbitant treatment and detox costs along with the daily living needs.

Thanks so much for all of the love and support, we will not give up on our girl.

-Team A

Lori Kadar (Adriana’s Aunt)
lrk@gokadar.com
609-417-1854