I am a Nurse Practitioner. Three years ago I was working for an integrative doc who discovered her daughter had Lyme disease. She decided to begin treating it and spent a few weeks with some LLMD’s. Anything that she did I needed to learn as well so I dove in to learning, listened to ILADS workshops and studied power points and read what I could find. Needless to say I was stunned by the politics and the horrific marginializing that our current system has done to CLD people. I eventually left this practice and moved to Gordon Medical and began what I call grad school for CLD and other biotoxin illnesses. Then about 1 1/2 years ago I discovered that Amanda, my daughter, had CLD and probably for over 20 years with activated disease. She fell full blast into being gravely ill and our journey began in earnest on Sept. 26, 2010 when we went to the ER for the first time for unrelenting vomiting and dehydration. Since that first visit to the ER we have been an additional 16 times, with 7 inpatient admissions as well. We tried different hospitals but they were all the same. It matters who the doctor is how you are received.
It was on the 7th trip to the ER that I realized that Amanda was not going to get any support or treatment for her illness. All they would do is get the vomiting under control and give her IV meds for a few days until she could take oral food and fluid. No antibiotics, and no diagnostic work up after the initial CT scans and labs. As with most people with this disease, Amanda’s tests were all negative. One doctor wanted to diagnose Fibromyalgia, another Rheumatoid Arthritis, and most just saw Amanda as a psych case and me as a drug seeking and interfering Mom. One doctor asked me if we had followed up with a Psychiatrist yet as that would be the best route, and this while Amanda was vomiting and in so much pain she was delirious. Twice she was given only 2 liters of fluid when she needed at least 4-5, and we ended up back in the ER the next day. Some would refuse to give her narcotic even though she was on an around the clock dose of Morphine for her pain and had gotten no medicine for several hours because of the vomiting. This would make her symptoms worse!
I then knew that what was needed was a center where those with tick borne disease could go for treatment and support in a compassionate setting and get care as if they were in a hospital with 24/7 nursing care and other support. I began talking to friends about Inanna House and how I envisioned it. One friend told me I needed to write a book so that I would have some clout as I presented a business plan to those with the resources to fund the center. So I wrote ‘Nature’s Dirty Needle’ and got the idea of describing what it is like for those with Lyme , their families and friends, and how it impacted their lives on all levels. I wanted the book to be a resource for those still undiagnosed and family members who did not believe their loved one, thinking it is all in their head. To read story after story with so many similarities brings home the reality ofChronic Lyme Disease and how devastating it is for everyone concerned.
I have been asked many times to do another book with more stories so after Inanna House is complete I plan to do that and include all the success stories we will have to tell.
Inanna House will be a place of hope, healing, and peace. I envision a retreat like setting in the country, private rooms, safe pathways for walking, a pool and hot tubs, an infrared sauna, energy treatments, IV treatments, protocols for IV antibiotic treatment, a detox program, clean food, and emotional support. Part of healing from these infections is dealing with any traumas and hurts that are impeding recovery. The mental, psychological, emotional and spiritual aspects need addressing and this will be a part of the program. I plan to have an endowment so those who have depleted their resources can still come and experience healing. The best of all worlds of medicine will be incorporated into the program.
Inanna House will have MD supervision. There will be treatment rooms, a clinic, and room for conferences and classes. I hope to be able to offer residencies for health care professionals so we can increase the number of Lyme literate providers. I hope to use the clinical data we collect to further prove to the nonbelievers that we aren’t crazy and these infections do indeed exist in epidemic proportions. And to offer a place where we can create inpatient treatment guidelines that serve the Lyme population.
Currently, we are treating Amanda at home. We give her IV hydration everyday, and include amino acids and minerals, and Phosphytidal Choline which helps to bind the die-off and toxins and clean cellular debris, helping the liver to function better. I wanted to give her IV Vitamin C and B but it made her vomit so I had to stop for now. We are giving her meds around the clock every 4 hours. Her pain with the Herxing is incredible but after 14 doses of Gentamycin for Bartonella her eyes are more clear, her brain is more sharp, and her nausea is better. She is encouraged that we are moving forward. We are doing this at home as the hospital won’t do it because they don’t believe she has an infection and they fear the liability. Shameful!
This must change. It is my wish that this will shine more light on this issue and change how the current system views these infections.
Thank you, Mara
Mara Williams, ANP