rat lungworm disease

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Rebekah Uccellini Kuby

Rebekah Uccellini Kuby

Rebekah had her life undergo a huge change in January of 2015 when she was infected by the parasitic rat lungworm worm that targets the brain and central nervous system. Rebekah was infected from a slug she injested in a salad she bought at a restaurant on Maui.

Doctors did not know what was wrong with her. Finally after two and a half months of debilitating pain she was diagnosed with eosinophilic meningitis. Seeking better health care she left Hawai'i for the mainland and was placed in the care of physicians and neurologists in Portland Oregon.

Prior to this she had been working doing community development and poverty alleviation work for many years in Hawai'i, and she has dedicated the past 5 years specifically to working with the underserved and disenfranchised communities on Maui, Molokai and Lanai. Her work began with a grant focused on the communities with the highest rate of health disparities (which, in Hawaii, is the Native Hawaiian, Pacific Islander and low-income communities).

Marginalized communities mimic the land they live on; quite often, the land is sick. She has spent years cleaning up toxic soil — bioremediation on old pineapple and sugar cane land, dumpsites, and drainage ditches — and bringing new life into these forgotten spaces. She has turned sand pits into thriving food forests and community gardens, planted more than 10,000 native plants in just one year of her grant, and close to 500 Ulu (Breadfruit trees) for food security. She has helped to create more than 23 organic gardens — many in areas once deemed "food deserts".

Most unfortunately, the office where she worked from 2011-2013 was placed in the old Pu’unene school right behind the HC&S plant. She was constantly surrounded by toxic cane smoke, heavy pesticide spraying, and was coated daily with the processing water which was sprayed 30 feet up into the air directly in front of her office.

Last December, she became very sick: tests showed high levels of pesticide toxicity. She came down with a rare type of pneumonia, had multiple kidney infections, and her immune system was very weakened. 2014 was a hard year for her medically speaking, but she kept it very much to herself.

When she became ill it took three months and multiple mis-diagnoses to finally find out that a parasite had caused a type of eosinophilic meningoencephalitis. (Her current doctor believes that her initially compromised immune system, which was already dealing with the secondary layer of defense down due to the chemical toxicity, allowed these parasites to really overwhelm her system.)

The only real test for 'rat lungworm' (angiostrongylus cantonensis) is done in Thailand (called an ELISA test), taking more than a month to receive results. Rebekah had fevers for 21 days, lost 12 lbs, her hair had begun falling out. She couldn not keep food down and was in constant pain - she was also fainting constantly and had pins-and-needles numbness starting down in her feet and right leg. She was in and out of the hospital a total of 12 times doing tests, MRI's scans, antibiotics and IV's — it was a complete nightmare.

After she fainted during a round of blood tests with her Kaiser doctor, she was sent in an ambulance to Maui Memorial, where she saw her first good doctor, Dr. Giron. He set her up with an infectious disease specialist from Oahu, who recommended she seek further treatment on Oahu or better, the mainland. Had she stayed with the western doctors in Hawaii they likely would have given her steroidal treatments (which could have killed her) or would have had to drill holes into her skull to release fluid and swelling to her brain, and quite possibly put her into a medically-induced coma.

She is thankfully blessed to have a host of angels looking over her. Intuition led her to contact a remarkable medical intuitive named Jason Ward. He clearly described the parasite (down to what it looked like), pinpointed its location in her cerebral spinal fluid, and told her NOT to take the recommended steroidal treatments. We are also immeasurably grateful for the help of Dr. Lorrin Pang and Kristin Mills during some critical decision making time.

Also thankful for Kay Howe, whose son Graham had this same parasite and she helped to bring him out of a coma using alternative medicine, nutrition, and (amazingly) the same formulas Jason Ward recommended to Rebekah. These were IVs with very high Vitamin C, Antioxidants, Vitamin B, Calcium, and Glutathione. Thanks to Varshini, the healer who helped to stabilize Rebekah’s body for the trip from Los Angeles to Portland, Oregon where, by the grace of God, she got an appointment with Dr Fruehauf, a Classical Chinese doctor who helped to start the College of Oriental medicine there.

He generally has a 6 month to a year long waiting list, and treats the most difficult cases of parasitic infections, HIV, cancers and autoimmune diseases. We are forever grateful for Dr Cory and Dr Wolf for helping us to get that first visit with Dr Fruehauf - it probably saved her life.

Rebekah has trouble asking for financial assistance, even though she has come to terms with the need for it - having seen extreme poverty in Africa and elsewhere through her life. The unfortunate reality of her medical costs of around $7,000/month have made it a requirement. She was forced into looking at many options, such as disability, food stamps, and a medical advocate to try and get more extensive coverage for her ongoing treatments. Friends set up a couple of fundraisers for Rebekah to assist her financially during the critical part of her recovery.

Below is her testimony to the Hawaiian State Legislature for funding of Rat Lungworm Disease research:

Aloha - I know that this bill may seem like one that you have no interest in. Likely you haven't gone through this disease nor do you know anyone who has contracted this illness. But for a moment I'd like to ask you to imagine your child, or your mother - your sister or grandparent and imagine that they simply ate a salad or drank some water and suddenly they are sicker than you've ever seen them before.

It seems like the flu, they have vomiting and fever and you hope that within a few days they will be okay. A week passes and their fevers skyrocket and symptoms worsen. Headaches and neck pain to an excruciating degree - nerve pain so intense they scream if you simply place a blanket on them.

So you decide to take them to the hospital. They run tests and send you home saying it's probably just a flu and they give you antibiotics in case it's leptospirosis.

'It should clear up. Bring them back in if they aren't better in 5 days'

Five days go by, and they are getting worse. 3 more visits to the hospital. More tests. More bloodwork. Watching your loved one in excruciating pain even though they have a high pain tolerance. What could it be? Why are there no answers? The only clear thing is a high eosinophil count? Meningitis symptoms? Still no clear answers.

Soon they lose feeling in their limbs and cannot control urination. They start having seizures. Or worst case go into a coma. And so little answers. You feel totally lost navigating through this alone. What do you do...? Where do you go...?

This happened for 2 and a half months on Maui before my boyfriend decided to take me off the island to go see specialists in Oregon and California which, gratefully, saved my life.

It has now been 2 years of my life gone to this illness. More than $70,000 spent on medical treatments. I've had to leave my home, my community, my work, and my dreams and ambitions because of this illness.

It has been the most painful, depressing, and humbling experience of my life.

If this was Ebola or West Nile or some other name perhaps it would get recognition and the support that it deserves. Trust me, I wish it had another name, I cringe each time I hear it. But this is a disgusting disease with a disgusting name and I don't wish it on even my worst enemies.

Please don't wait until it becomes an epidemic. Don't wait until it becomes relevant to YOUR life before you take action. Our state should give the support needed to make sure that there is prevention, education, awareness, diagnostics and information easily available so that no one else has to go through this debilitating illness.

My name is Rebekah Uccellini Kuby and I am testifying as an individual, though I worked from 2010-2015 with schools across the islands as the Director of Grow the Change Program and educator with the Maui School Garden Network and program manager at Malama Maui Nui.

My entire life has changed forever because of this disease and I'm urging you to please support the amazing people who are trying to keep our children, communities and animals safe from this fate.

Don't risk this happening to you or your loved one before you support it. Trust me, you will want this informed care and support available if ever you or someone you need come down with this illness.

It is essential that adequate funding be allocated for research and education on rat lungworm disease, and I urge you to support this bill.

Rebekah Uccellini Kuby
Grow the Change Program
PO Box 962
Hana, Hawaii 96822

Rebekah (Uccellini) Kuby is an “Architect of Impact”. She is the founder of A-Fest Giveback Days, Grow the Change Program, You Beyond Borders and currently is the project director for EthicalCoach. She has helped many of our tribemembers to consult and support them in launching their own nonprofits and social responsibility initiatives, and legacy projects. To help fund her heart work, Rebekah is a world renowned landscape architect and permaculturist who has built, designed and managed sustainable retreat centers for highlevel clients in 3 countries, (working with the likes of India Arie, Lady Gaga and David LaChapelle in the creation and design of an off-grid Artist retreat center). She has been honored for her work in transforming abandoned spaces into thriving 'access-hubs' and community gardens in 23 disenfranchised communities - homeless shelters, hospitals, refugee camps, orphanages, prisons.


Rat Lungworm Victim - Rebekah Uccellini Kuby with Researcher Kaye Howe

This information is not meant to be used for self-diagnosis or as a substitute for consultation with a health care provider. If you have any questions about the parasites described above or think that you may have a parasitic infection, consult a health care provider.

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