QUESTIONNAIRE RESULTS

Below are the results of questionnaires we have made available to people who think that they have had rat lungworm.

1. Where were you living when you contracted rat lung?

a. Kapoho
b. At home on the farm
c. La‘akea
d. Opihikao
e. Puna
f. Papaya Farm Road, Wa‘a wa‘a
g. Wa‘a wa‘a
h. Poho‘iki
i. Lanipuna Gardens
j. Hawaiian Paradice Park
k. At home, Orchidland
l. Orchidland

2. Do you know how you got rat lung? Please describe.

a. I believe the vector was eating mangos off the ground with baby slugs in them.
b. Ate bele, edible hibiscus
c. No, but can guess I put a slug in my green smoothie
d. Traced it to the wheatgrass I was drinking
e. Raw veges, blended
f. Slug crawled into a drink, not found until glass was emptied (drank)
g. Probably a pot bad luck dinner
h. Don't know
i. Bought convoluted lettuce at Maku‘u farmers market. While cleaning, found slug and picked it off. Continued washing lettuce, made salad for four. I was the only one to get it.
j. No I do not, I assume catchment tank, handling them or eating one.
k. Fresh raw vegetables from my garden. Put into Vito Mix - it tasted odd.
l. Raw vegetables from my garden, put into Vito Mix.

3. What were your symptoms?

a. Extreme pain, head, neck and back ache, fatigue
b. Severe headache, severe muscle pain, not hungry, massive salivation
c. First skin felt like there were pieces of glass in it in certain areas, the areas got worse, felt like raw skin wounds with no apparent external sores. Then headaches, severe, especially worse when I moved.
d. Left arm intense pain sensations, moved to neck and then into my left side.
e. Extreme itching, paralysis, December 08, inability to urinate, breathe, swallow
f. -
g. Headache, extremely painful neck, back, right shoulder and right arm with paralysis of these areas, pain in right knee, muscle rigidity and fatigue
h. Nausea, fever, skin burning
i. All listed on Medline, from painful skin sensations to raised eosinonphil count, to migraines, to meningitis to cough and white sputum.
j. Severe headaches, stiffness in neck and back, hallucinations, tiredness, memory loss, unable to form conversations, read books, etc
k. Body itched all over - thought it was washing soap, tremendous pain in my legs, overall felt awful and body ached and hurt all over, could not sleep - was too much pain, was to sick to wait in Dr.'s office, could barely walk.
l. Itching first, aching all over, headache, trouble sleeping - sore all over and bed felt too hard, loss of weight.

4. How did you treat it (ie: western medicine, alternative medicine)?

a. I took long hot baths, hot water bottles in bed, and raw meats and fats, no drugs or painkillers.
b. Didn't know at first, then took noni and spirolina
c. Alternative only, turmeric in high quantities
d. I didn't. I ate my regular organic near raw vegan diet
e. -
f. -
g. Had no idea what it was (2005), after weeks of research figured it was rat lungworm, got an antibody test, came back positive. Drs. did not know how to treat. I took hot baths and ate ibuprofen.
h. Acupuncture, vitamin therapy, eye surgery, pain killers
i. Dr. did not know what it was. Prescribed pain killers (analgesics) and anti- Inflammatory. I was diagnosed by a friend and read about it on Medline. Dr. did not believe me.
j. Alternative medicine, Chinese herbs, Vit C lots, stopped eating sugar and starches, stopped smoking and drinking, just took good care of myself.
k. Went to hospital for dehydration and was tested, they said I had lepto (I had antibodies from before). They gave me antibiotics. Dr. said there was nothing they could do for me.
l. -
5. Do you still have any symptoms? Please list them.

a. I have a black spot in my right eye, nerve damage, skin sensitivity, chronic back pain, also depressed immune system
b. Yes, only some itching and sensitive on front of thighs
c. One area on back still raw
d. Sunburn sensations, inflamed tendons, feeling of incredible sensitivity
e. October 09, inability to swallow, speak, walk, urinate, eat... (the form was filled out for a patient)
f. -
g. 4 years later, pain in upper back, right knee, painful elbow and a right arm I cannot fully straighten
h. Pain
i. No
j. Yes, headaches, only slight, memory loss, spelling is hard.
k. Neuropathy in feet, right arm and thumb and next 2 fingers. Feet hurt and ache and walking is difficult. Tire easily.
l. Neuropathy, body sore all over, intense pain internally. Little energy. Reactive to everything, smells, etc.

6. How has rat lungworm affected your life?

a. Made me more thankful for the health and vitality and moments of painfree existence I had before, am more physically active in some ways now. I get more massages and don't work as hard as I used to because I can't, living with disability compared to before.
b. 6 weeks of severe pain and near death helps build character
c. Made me very cautious about what I eat fresh
d. It's bothersome in the evenings, even after 4 months
e. -
f.
g. Since I cannot straighten my arm and have bad pain in my arm and back with certain movements, it has restricted, and/or made me aware that some of the things I used to do without a thought, I now have to work through the pain to do them.
h. Pain, bladder issues, vision problems. On SSI because I cannot work.
i. I thought I was going to die and wanted to.
j. Well I often joke; there goes my $40,000 education that I'm still surrently receiving. But in all, I'm slower than before. I have changed my lifestyle. I don't smoke sigaretts any more, I am more aware of being precautious. I could almost cry thinking what would have happened if my 10 year old son got it. Thank God. It is a really hard thing to have, it hurts really bad, it takes your mind away and it lasts a long time.
k. Certainly makes me appreciate it a lot more. I caretake Vida since July of 2009 and she is in enormous pain so I am thankful I can do it and get around.
l. Trashed it totally.

7. What preventative measures do you take to keep from getting rat lungworm again?

a. Inspect everything that goes into my mouth, don't really eat food prepared by others
b. Never eat bele
c. Wash greens super well, slug bait in greenhouse, thinking about other measures
d. I wash my garden vegetables carefully
e. -
f. -
g. Inspect food, wash veggies well, grow veggies I eat raw on a table, legs sprayed with copper sulfate solution. Careful at pot lucks. I want to know who made the dishes, and I do not eat anything raw unless I know how it was grown and prepared and if they are aware of the problem and took appropriate measures.
h. Wormwood, liquid B12, garlic pills
i. Rarely buy local lettuce, and when I do, I soak in food grade H2O2. Use diatomatious earth regularly.
j. I use gloves. I don't eat lettuce unless its hydro grown and I wash it really well. I still eat raw veggies like zucchini where I can see to wash it off, no crevices. I wear shoes outside and use slug bait to kill the buggers. I also hand pick the African snails and kill them by putting them in a jar with bleach and then throw them away. I have cleaned my catchment tank thoroughly with bleach and have filters on the spigot coming into it and a filter going into the house. I also put bleach in the tank every two weeks. I have cleaned out my gardens with excess debris.
k. Pray a lot. Cook most stuff and use grapefruit seed extract in water and kill the snails and slugs whenever I see them, and set traps for them.
l. East only cooked food.

8. Do you think rat lung affects your community/the State of Hawaii? If so, in what way?

a. For sure, creates fear of fresh produce, affects individuals intensly who get it, and their caregivers
b. Many people very sick
c. Yes! We need to learn more. It is a handicap to not be able to graze.
d. Well sure, I know people who won't eat raw vegetables. That's sad. People need to know the symptoms. I had rat lung for six weeks before I knew what I had.
e. Yes ! If people are not educated on it, then these are more and more people at risk.
f -.
g. People are becoming more aware of the problem, but still many are unaware, including Dr.s. There is a large turnover of Dr.s in the community, many are new from the mainland with no tropical disease education whatsoever. This is a problem. They have no clue and cannot recognize tropical illnesses.
h. It is handycaping/killing people
i. Absolutely. I was contacted by health dept. and reported that this was more common than they thought because the doctors did not know about it, did not diagnose it and did not report. I recommended: 1) Educate Docs and Continuing Ed program, 2) Educate public and media. The next month newspaper articles appeared on both sides of island.
j. Yes, t is dangerous, young children who are just playing in the yard can get it. It can kill our children, cause them to go into comas and be vegetables or just seriously impair them for the rest of their lives. Anybody can get it. I don't eat out of my garden, and I don't live in a shack in the jungle. I am an educated citizen and I got it.There are too many stipulations to this sickness, people need to wake up. This could also affect the agricultural sector of our community. Decreasing the farming culture and exports of certain crops.
k. Quality of life isn't what it used to be, its scarey new, can't imagine getting it again and I urge everyone to be careful.
l. -
9. What actions would so you think need to be taken about this issue?
a. Awareness education, preventative slug and rat depopulation, research info, alternative therapies and pain relief
b. Public education
c. Study disease transmission and how to stop it
d. Six weeks before I knew what I had
e. -
f. -
g. Education for the public and the medical community. Scientific studies done on best methods of killing nematode that may be present on veges.
h. Not sure
i. Education, more hydroponics, use diatomatious earth
j. Lots of educating and maybe an eradication program for the rats, slugs and snails. Research to see how big the problem is getting, how many have gotten it, etc. I worry that some people have it and don't know, especially people from other places that don't generally get focused on for education efforts. Also research to see what kinds of products kill the parasites. The most important thing is to educate our doctors about this. I was only tested out of the suggestion of my mother, after being tested for leptospirosis and given MRI's and Cat scans. Doctors need to ask questions when someone comes to them with symptoms such as localized headaches, stiffness and tiredness.
k. More publicity and info. So much of it sounds like it is nothing serious.
l. Studies, more warnings.