How was life before contracting Rat Lungworm Disease (RLWD)?
My life before RLWD was very active and creative, both mentally and physically. I was able to go anywhere I wanted at any time as I had access to a lot of energy and physical endurance. I used to be a teacher, a sustainability educator, an art instructor, and an Artist. I taught garden and sustainable practices and Art classes in Honolulu, HI. I moved to Hawai’i island with my ex-husband to start our organic farm and a family. We wanted to settle down as we continued teaching and living our idyllic healthy Hawaiian lifestyle filled with fresh fruits and vegetables.
Since we were spending time working on developing our homestead we purchased “ALL” of our fresh fruits and veggies from local farmers at the farmers markets in Hilo and Hakalau while living in Honomu instead of growing our own. We built relationships with our farmers and felt great about supporting their efforts.
We both contracted RLWD on Halloween weekend of 2014. I will never forget that holiday weekend. It was strange and it only got stranger once we shared a green drink made with mixed baby lettuce greens that were bought at the market that weekend in Hilo. We were working hard so we drank a lot of smoothies and green drinks because they were easy to make, traveled well, and filled with nutrition. The only thing I didn’t know was that it was contaminated with RLWD larva. We both fell ill immediately and presented typical symptoms indicative of RLWD.
What were your initial symptoms?
Some of the first symptoms I remember were; stomach pain, nausea, stomach itching like crazy (that was when the parasites were eating through my intestines), fatigue, intense fever, sweating while sleeping, needing to sleep a lot but found it challenging to, felt like something was crawling under my skin, it felt like invisible bugs were biting my skin, itching all over body, dizzy, confused, lack of appetite, low energy, headache, skin and body felt achy and bruised but there were no bruises, there was pain in old injuries.
As time went on; It became challenging to urinate and walk to the restroom as I began to lose feeling and mobility in my right leg. I had to be carried to the restroom and in about 13 days after ingestion of the parasites I lost my ability to walk independently. I had to have a cane for assistance, and someone help me walk. Washing my hands and taking a shower was extremely painful. I was not able to tolerate hot or cold water on my skin, so the water had to be neutral or room tempeture only feeling wet upon my skin.
My eyes became overly sensitive to light and all the windows needed to be covered in addition to the curtains drawn closed. My hearing became so heightened that I had to ask people to whisper as they spoke to me and I was speaking softly. It became challenging to speak and communicate. I could not have any computer stimulation at all as my mind was in a whirlwind of pain and the stimulation hurt.
I slowly found it impossible to leave my bed or have anyone touch my body. I could not sleep and could not get out of bed. My headache increased rapidly and became the worse headache I have ever had in my life. It felt like there was a vice grip on my head and neck. My teeth would grind, and my jaw was locking up on me as it became hard to speak. This was due to the parasites eating my brain as they bulldozed around it. I started having seizures that felt like someone was putting an electric stun gun on the back of my neck while piercing my brain with a long lei needle. I became a voodoo doll and had no control of my body. I only knew that I was going to die in the most painful way possible if someone didn’t help me quickly! This disease is torture from the inside out.
How did you find out you had contracted RLWD?
I thought I had RLWD, however it was not 100% confirmed until after my first spinal tap in the emergency room at Hilo Medical Center.
How were you diagnosed?
After, the results from the spinal tap came back positive and my Cerebral Spinal Fluid (CSF) showed elevated Eosinophils; only then was I admitted to Hilo Medical Center for treatment. I was under Dr. Jon Martell’s care and observation for 11 days to make sure that I did not fall into a coma or die. This time was the longest 11 days of my life stuck inside of a cold hospital room alone.
I had many visitors, but I still felt alone and confused as to what was happening to me. I had a dream in the hospital that I had fallen off a waterfall and could no longer feel my legs. When I opened my eyes there were nurses over me and I asked them if I was dead and they said no.
Then I told them I was not able to feel my legs and I went back to sleep. Losing my ability to walk was the most challenging part of this disease. Temporary paralysis is not temporary, to this day I have delayed response from my brain to my right leg and sometimes the signals never make it down to my toes and I fall.
How long did it take and how many trips to the doctor and/or Emergency Department did you take?
I first reached out for help from my primary care physician in Hilo. She told me my ex-husband and I had the flu and to put lotion on my tummy and told us to go home and rest. Secondly, we went to visit our first ever Naturopath in Hilo that examined the both of us and told us to go the Hilo Medical Center’s Emergency Room. Thirdly, we went to the ER, was inspected, blood and urine tested and released without help.
I asked the young physician that examined me (who was a visiting physician from the mainland) if I had Rat Lungworm Disease, because my eosinophils were high on my blood tests. He said that I only had a small virus and to go home and rest.
The second time, I tried to get treatment from the ER was more strategic. I was determined to get help because I was dying and there was something eating my brain causing me great pain. The first ER physician saw the both of us and said she didn’t know what to do with us, so she gave us to two other physicians and split us up.
My young doctor (who was from O’ahu) was clueless and didn’t run tests on me only to release me again without help leaving me to die. As I was being wheelchaired out of the exit door (at this point I was unable to walk alone at all because I was temporarily paralyzed on the right side of my body) a nurse came running down the hall yelling for me to come back.
I had to reregister a third time to get into the ER for help. The nurse said that my ex-husband just had a spinal tap done and tested positive for RLWD. Once admitted they performed a spinal tap on me collecting my Cerebral Spinal Fluid (CSF) and confirmed what I already knew. I had this brutally awful disease inside of me and there was something eating my brain. I was finally admitted to Hilo Medical Center and I knew I would get the help I needed.
Were you counted at a RLWD statistic by the Department of Health?
Yes, I cannot remember what case number I was for that year. I was also documented by the Center for Disease Control (CDC).
What are the long-term effects for you in your phase of RLWD?
This November will be my 5-year mark since becoming infected with RLWD and I still have the following lingering symptoms that come and go unexpectedly:
Eyes- light sensitivity, must wear sunglasses under bright lights and outside, reoccurring sharp pain in the back of my right eye and ocular nerve. Sometimes it feels like an ice pick is stabbing into my eye socket.
Neuropathy - entire right arm from neck down, left arm from armpit to elbow and up neck, hands especially at the wrists, hands feel like sand paper due to nerve damage, lower right abdomen or flank down the right leg front to back. Strong random electrical shocks or currents that run through my body sometime causing me to jump or my entire body to spasm.
It feels like I have a Portuguese man o war permantly attached to my spine and its tentacles are wrapped around my right thigh and leg 24/7. When my Vagus nerve is inflamed it feels like an electrical shocking burning hot pain that is hard to escape.
Neurological issues - headaches, migraines, sharp electrical pain attacks in brain, lighting bolts in the brain, stabbing sharp ice pick brain pains, seizures, major organ pains, constant feelings of exhaustion, confusion and shaking with high stress levels. My nervous system was hijacked.
Nervous system damaged-hearing, sight, touch, taste, smell, feelings. I can no longer handle being around a lot of people without heightened anxiety. I became very sensitive to bright lights and loud situations. My emotional protective buffer has been damaged and needs a lot of quite time alone now. I have become hyper aware in new surroundings and become over stimulated and overwhelmed rather quickly.
Sometimes I have to leave an environment, situation or walk away from a person if my inner stress levels accelerate quickly and cognitive fatigue sets in. It is kind of like rebooting a computer and closing down all the browser windows for a fresh restart and new wi-fi connection.
Emotional issues - depression, waves of grief, intense anxiety, panic attacks, coping with my loss of independence and lack of fun, I become easily irritated and upset with idiots or angry people. I suffer from feelings of a loss of control of my life and the way it was before I got infected, emotional breakdowns, crying episodes of pure sadness for my pain, isolation and aloneness.
Sleeping - issues with pain and insomnia, I take medicine to sleep and it doesn’t always work as the pain makes sleeping and resting my nervous system a challenge. I wake up feeling exhausted as if I did not sleep at all.
Immune system/Lungs - are weakened and I often feel fatigued after simple tasks like shopping, going to doctor’s appointments and other everyday chores that come along with shortness of breath and chest pains like when I carry the laundry basket or grocers.
Kidneys - Hematuria (blood in urine), massive pain with urination and shortness of breath, neurogenic bladder, intense back pain if I hold my urine, hands go numb when I hold it, unable to hold for long amounts of time without pain, nausea and a sense of urgency. Frequent unexplained kidney and bladder infections occur, and I was diagnosed with renal papillary necrosis by one of my Nephrologist in Hawai’i.
Bladder - Tumor removed May 10th, 2019 that was non-cancerous. Now, I am under a five-year observation. This may be due to the chronic infections and irritation of the urinary tract since my RLWD infection. My research confirms this to be true. Parasites can lead to bladder cancer.
Intestines - daily digestion pain, pain while having a BM, cannot eat many types of food that are high in acid or spicy, frequent nausea, intestinal pain when I am lifting anything over 5-10lbs that causes nausea and pain with shortness of breath. I have been told it is due to the scare tissue.
Spine - sharp pains, stabbing in the lower spine area, zaps of electricity shoot down from my brain randomly causing spasms in my extremities, ice pick in lower spinal column, my legs often go numb from my piko (belly button) down. My right leg doesn’t always get the signal from my brain, so I have falls often due to delayed nerve signals up and down my spine. I still have to walk with a cane for long-distances or while standing for long moments.
Heart - It is broken and sad that these parasites got inside of my body. There were inside of my heart (pulmonary artery). In the hospital I felt them inside my heart wiggling around and making my heart beat faster. I felt like I was going to have a heart attack. Having destructive tissue eating parasites swimming through my heart is a feeling I can never forget. Sometimes my heart palpitates, and it freaks me out. It feels like there are still parasites inside of it and I am retraumatized. My heart doesn’t feel like it beats like it used to pre-RLWD. Writing and sharing my RLWD story is emotionally traumatizing. This disease is the worst experience I have ever had in my life. No human can inflict pain upon me or break my heart as this disease has.
What medications and/or natural approaches are you using to ease your pain and neurological discomfort?
I have tried almost every-thing I was able to afford to ease my pain. I have gone broke trying to heal from the damage these devastating parasites did to my brain and body. I have done physical therapy, aqua therapy, bought a bio-mat, practice yoga, lift weights, tried any and all supplements that I could get my hands on to help ease my condition.
I willingly got vitamin B-12 shots in my arm, went to weekly acupuncture sessions and took Chinese herbs, chiropractic work, seen massage and lomilomi practiconers, visited Kahuna’s that prayed over me and blew into my organs, attended sound healings, soaked weightless in a salt water chamber in the dark naked, soaked in mineral hot springs, soaked at the beach and practice self- hypnosis. I go to pain therapy and attended two pain management workshops; one in Hawai’i and one in Colorado.
I have people chant and pray for me, and I have chanted and prayed for myself. I have tried almost everything to find moments of relief from the never-ending pain. I sought out stem cell therapy and my doctors all argued against it. I have tried many medications and the list below is currently what is helping me to get through each day and try to live as normally as possible. Almost five years post-RLWD infection, and I still have between 11-13 doctors and specialist that I see regularly.
I attend an average of 2-5 doctors/physical therapist/alternative healers’ appointments a week. It does get depressing spending so much time in these places, but I have to maintain my strength and positive notion that maybe one day soon this pain will go away, and we will discover why there is blood in my urine, why my white blood cell count is always high and I am exhausted.
Current Medications as of 5/2019
Gabapentin 600mg 1-2 at bedtime
Nortriptyline 50 mg 1 at bedtime
Hydromorphone HCL 2mg 1x every six hours as needed
Rizatriptan ODT 10 mg tablets 1-3 x a day as needed
Toviaz 4mg 1 a day
Medical Marijuana THC/CBD’s as needed
Ventolin inhaler as needed
Daily Supplements as of 5/2019
Fish oil highest strength up to 10,000 mg a day
Hawaiian Spirulina
Japanese Chlorella
Icelandic Kelp
Curcumin 750 mg
B-12 complex
B-12 shots
CALM with Calcium Magnesium
Trace Minerals
Vitamin C
Triphala (when needed)
Aloe Vera (when needed)
How are you coping? What do you do to help you relieve stress?
I have learned many new tools and coping skills since becoming infected with RLWD. I have been seeing a pain therapist regularly since I became infected and this has greatly helped me to cope with my emotional and physical pain. This disease greatly impacted my health and well-being as it broke the foundation of the life I created and continues to challenge my spirit.
What I have found to help me the most is to spend a lot of time resting my central nervous system and managing my pain in therapeutic ways, such as visualization and regular meditation. I have had to dramatically alter my lifestyle and make important changes to my old life. I now see my life in two parts. Pre-RLWD and Post-RLWD. I have come to accept that this new version of my body and mind is something that I must embrace.
When I remain in the present moment calmly breathing deeply, and walking slowly through life one step at a time, day by day, managing this new pain body with grace there is an ease that accompanies me, and moments of relief occur. Spending time in nature, near or in water helps my spirit feel grateful for how far I have gone along my healing path.
I have gratitude for the days I can walk unassisted without my cane and I have lots of physical energy. This makes me happy. Swimming cools and calms my nervous system and soaking in hot water relieves gravity and lowers pain levels. I no longer live near the ocean, so I seek solace near the rivers and lakes close to me.
Who do you turn for help?
I am blessed to have many wonderful friends that have supported me and loved me along the way post-RLWD. Those connections are strong and important. Some of my friends or people I thought were my friends shed away leaving space for new connections to be had. These new friendships I have cultivated post-RLWD have really been nurturing and surprisingly therapeutic.
Different therapists over the past years helped me along my way and I am grateful to them for their guidance, support and cheerleading skills. When this illness infiltrated my life, I knew I needed help beyond myself and my community. Seeking and accepting help from others is so important as I have lost my full independence. If you get RLWD prepare to have your lifestyle adjusted majorly.
Another direction I turned back to for support was my Nichiren Buddhist practice. The community is wonderful, and the practice is soul-healing. Calming my mind and seeking Kosen-Rufu or inner peace within myself and my health situation has benefited me. Chanting and praying for inner peace as I connect to a large mystical energy has been an anchor that grounds me to my body and keeps my spirit hopeful.
The Hilo Medical Center’s Rat Lungworm Disease Support Group has also been extremely beneficial for my healing process. I have attended every meeting since they started to live-stream the meetings. After, the last major seizure I had in 2018 I reached out for more support. I had to relocate to the Mainland to live with my brother so he could help take care of me and I wanted the RLWD meeting to be live-streamed so I could attend them and one day I received and e-mail invite to the meetings.
I had to leave Hawai’i island in search of better health care, then I was advised to leave Honolulu in search of better health care, so I relocated to Colorado. It has been an extremely difficult adjustment for me here but hearing the coqui in the back-round of the monthly meetings brings me joy and my brother has been very supportive as well. Connecting to other RLWD survivors helps me to understand the common symptoms we share and the personal ones. It has also been supportive to have the hosts of the meeting help guide us to wellness. The RWLD support group is an important link in my support chain.
If there was one individual that has helped me along my RLWD healing path the most I would have to say that would be the amazing Kay Howe. She is always there for me and usually has a research article to send my way that goes along with whatever I am complaining about.
She has been an inspiration to keep on keeping on. She showed up at my house a few months after I was released from the hospital with Dr. Susan Jarvi looking for my blood. I said they could have it for research and we have been friends since. I would feel totally hopeless if it was not for Kay and Dr. Jarvi’s work and public health raising efforts. RLWD Mama Kay Howe Rocks!
What are your goals in living with RLWD?
The number one goal I have for myself is that one day I will spontaneously heal, and all the pain will disappear from my body. My mind would heal, and this disease would fade into a distant faded memory. Spontaneous healing and living comfortable in my body is my main goal and focus.
What are your hopes for the future of RLWD?
My prayer for this disease is that the medical community learns how to listen to infected RLWD victims and treats them immediately eliminating most long-term symptoms. I want the state of Hawai’i to inform all locals and visiting tourists consistently and establish statewide protocols for public health warnings in multiple languages. I also desire the State of Hawai’i to become the leader of research, education and treatment of this disease supporting future victims and their caregivers.
The CDC (Center for Disease Control in Atlanta, Georgia) needs to help spread more public awareness and provide a way to properly count victims nationally, consistently. Currently, the numbers that are collected are inaccurately based on a positive spinal tap which has shown to be inaccurate for proper diagnosis. Invasive species and vector control are important things to remember and plan for in the future but what is needed is a RLWD public health campaign.
I returned to school as a way to give me more time to heal in bed and exercise my brain and body that was damaged. I dedicated my master’s program to RLWD research. I start my masters project this year and I am creating a National RLWD Public Health Policy Campaign. I have learned a lot about the history and spread of RLWD on the planet and its future.
This disease has been kept silenced by the State of Hawai’i since the 1960’s for the economic benefits of tourism and agricultural exportation going uncontrolled and unannounced until recently with the onset of media awareness and growing public concerns.
It is time for this to change. As a victim and survivor of this brutal disease I am dedicated to my RLWD advocacy healing path. I am a medical refugee in search of a better life in this body since becoming infected with RLWD for myself and others. I wish this disease upon no human or animal.
Mahalo
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.
Name: S. Shawzy Cann