WE HAVE MET OUR GOAL!
My mom has successfully completed 2 months of Hyperbaric 02 treatment, with good results. So good, that the doctors do not want to stop. While you all were sponsoring these 2 months of treatment, we have been working to:
1) Get insurance coverage for additional treatment for my mom.
2) Use her case as a precedent for others seeking treatment.
3) Make this treatment a category that is covered by insurance for other patients.
...And we did! Having seen a strong proof of concept by her first 2 months of treatment (thanks you to all), Central Coast Alliance has agreed to cover my mom's ongoing treatment from now on. This paves the way for other patients seeking the same treatment. The team at Bay Area Hyperbarics has been integral in making this possible.
Thank you all for helping to extend the length, and improve the quality, of my mom's life. I am deeply grateful to you.
In 2011 my mom got really sick. She had night sweats, fevers, and extreme exhaustion. She would get better: then it would start all over again. Then she started tripping and falling. We canceled our vacation plans because she was too sick. It was the beginning of many cancellations in her life.
We spent over a year trying to find a doctor who could diagnose her. Meanwhile, her symptoms got worse, She was in extreme pain, had trouble getting enough rest to do basic tasks, couldn't concentrate or remember things, and her body ached all over. By 2013 she was no longer able to work.
Some of my hair turned white from stress, as I scrambled to meet her basic needs. I was suddenly loosing my best friend in the whole world. My running partner. My travel companion. My intellectual collaborator. My travel buddy. My mom.
-Atrophy and pain, PICC line and daily antibiotic treatment-
Borellia is a living thing that needs a habitat, like all living things. If we can overdose the pathogen on oxygen, we might win the battle.
Most doctors were stumped. One night I watched my mom's legs contract and twitch, and while she was writhing in pain, I called the on-duty doctor at Palo Alto Medical Foundation to ask for advice. The doctor said, "So you want drugs, is that what you want?" He had no idea how to help her. We just stayed up all night together.
But one very smart doctor thought to test for tick-born infections. Sure enough, my mom tested positive for Borrelia Hermsii, a pathogen related to Lyme Disease. It is sometimes called Lyme's "ugly cousin" because the symptoms, combined with co-infections, can lead to neurological syndromes like ALS (Lou Gehrig's disease) and CBS (Corticobasal syndrome).
Borrelia Hermsii is one of several tick-born infections that cause Relapsing Fever. It comes from a soft tick, not a deer tick. Soft ticks are nearly invisible, feed at night, and live in the walls or rafters of buildings where rodents nest. My mom lived on the UCSC campus, in a building that was not properly sealed and has since been reconstructed for this reason.
She contracted the infection as it is commonly contracted: maintenance workers removed and killed rodents without finding and removing their nests. A hungry soft tick, still in the nest but without its rodent host, sought the closest warm body through the torn Tyvek in the walls... It tracked the CO2 from my mom's breath while she slept, and had its blood meal.
If tick-born infections are diagnosed and treated immediately, people are usually okay. But it took 18 months to diagnose my mom. By that time, the infection had reached her brain, causing visible atrophy that made her MRI results look truly alarming. She suffers cognitive dysfunction, progressive muscle loss, weakness, lack of coordination, loss of short-term memory, chronic fatigue, immune dysfunction, constant aching, and rapid onset osteoporosis.
Her partner suffered from the same infection. He died this January after years of battling the illness. We anticipate a similar outcome for my mom, without the right intervention.
Luckily we are working with a cutting edge team of doctors who have some brilliant theories about treatment options: Two years ago, doctors put my mom on a PICC line with heavy antibiotic treatment that eradicated one co-infection, and reduced titer levels for Borrelia Hermsii by a factor of 4! This slowed the rate of her decline, and gave her nearly 2 years of life (however transformed by chronic illness).
Now the pathogen has resurged, and my mom is sliding back into decline, as is evidenced in these photos, taken this month. This time, doctors want to combine PICC line antibiotic treatment with O2 therapy.
The idea is this: Borellia is a living thing that needs a habitat like all living things -- it cannot tolerate too much oxygen. Antibiotics can reduce, but not eradicate the Borrelia Hermsii. If we can overdose the pathogen on oxygen, we might win the battle.
I am launching this campaign on my mom's 56th birthday.
-The last year of my mom's good health-
I hate knowing that we have the power to save my mom's life and stop the progression of neurological decline in her body, but cannot access this power because of money. While insurance covers some of the medication, and I am working two jobs to cover the expenses insurance does not cover, I cannot afford the full month of O2 therapy required to make this count.
It costs $10,000 to give her the chance she needs to eradicate Borrelia Hermsii. The moment is now: this will work best if she combines it with the PICC line treatment she is on right now. Because time is of the essence, and I am out of resources, I am asking you to help me save her life -- or at least extend it.
For those who know my mom, you know what a valuable member of our community she is, and what it means for all of us to have her with us as long as possible.
My hope is that her treatment will not only extend and improve her life, but that it will also help set a precedent for others' medical care. Millions of people suffer from tick-born infections, but the research, treatment, and even public awareness are incredibly limited. My mom and I are both committed to changing this, so that others can avoid such heavy losses. We join others who are pushing for:
- insurance coverage of treatment protocols supporting the Stanford Working Group's findings over the next ten years
- education for doctors to recognize and test for tick-born infections
- collaboration between infectious disease specialists and neurologists to identify infectious causes of neurological syndromes
Please help me keep my mom alive, so she can work to keep others alive, too.
-Mom and me in Jamaica-