A Personal Peek into My Life: Living with Ciguatera
photo by Erik Aeder
Aloha friends. Before the holidays really begin I wanted to send this to you; my supporters, clients, sponsors, friends, my Ohana in sincere gratitude for giving me the drive and strength to forge ahead.
I am so very thankful that I’ve lived on the beautiful island of Maui for almost 14 years. Living the island lifestyle and having the most amazing circle of friends is a real blessing. As a personal trainer, water sports enthusiast and SUP athlete and one whose passion is being on the water helping and coaching others; this is literally my way of life.
But what if you discovered that you had a health condition where it was contraindicated and/or suggested not to exercise too hard or possibly the notion of being in the sun, or ever eating fish again may not be the best thing to do and trigger your nervous system to release a toxin, so painful and disabling with no way to escape?
What if you were in a career that required you to do all the above and it was your life-long dream and passion? And what if you were paddling on a downwinder and your skin, your eyes, your mouth, your feet, felt afire like a vat of acid being poured on your body the entire way because your nerves have reversed your normal sensation of temperature? How would you navigate?
I feel compelled to share this with all of you, although I felt for some time it may be career suicide. As I pondered now for two years, I decided that maybe I could help others by informing them to take note of a condition that is becoming more recognized and common throughout the world. This is especially true for those of us living in Hawaii and other subtropical areas.
Before I go on, I don’t want to alarm you, have you feel sorry for me or treat me any differently if you see me next to you at the next downwind race or out catching waves. I am training, I am paddling and I am on this planet to help others in many ways through the water sports I enjoy. So chalk this one up to one more way I want to help you become more aware or maybe help someone you know who may be or have had experienced similar symptoms.
You may be surprised to learn that this is how I’ve had to roll and cope since June of 2011 to be exact. This condition is often misdiagnosed as multiple sclerosis and is one that I will have for the rest of my life. It is called ciguatera. (ci·gua·te·ra) Pronunciation: see-gwuh-ter-uh ( Reference links at end of article )
Some of the facts: As referenced by the The National Center for Biotechnology, they identify it as: “Ciguatera Fish Poisoning (CFP) is the most frequently reported seafood-toxin illness in the world, and it causes substantial physical and functional impact. It produces a myriad of gastrointestinal, neurologic and/or cardiovascular symptoms which last days to weeks, or even months.
They also state: Ciguatera fish poisoning (CFP) is a foodborne illness affecting humans worldwide. Humans acquire this illness by eating reef fish containing the naturally occurring toxins, ciguatoxins. Multiple ciguatoxins have been identified, but in this paper ciguatoxins will be referred to collectively as “CTX.” CTX is derived from benthic dinoflagellates of the genus Gambierdiscus, growing predominantly in association with macroalgae in coral reefs in tropical and subtropical climates. The toxin is transferred through the food web as the algae is consumed by herbivorous fish, which are consumed by carnivorous fish, which are in turn consumed by humans.” ( more references below )
WebMd: “Ciguatera poisoning is most common in Florida and Hawaii. Red snapper, barracuda, parrotfish, jacks, and grouper are most commonly contaminated, but over 400 normally safe fish species may contain the poison. There are no good “rules of thumb” for detecting tainted fish. They look, taste, and smell normal. Testing for ciguatera is available in some areas.”
New York Times, January 2013: “Fish Toxin Cited as Cause of Poisonings in ’10 and ’11 …” He was one of 28 New Yorkers to fall ill from ciguatera between August 2010 and July 2011 — more cases than had been reported in the entire preceding decade in the city..” ( see more of this article below )
The symptoms are vast but the most notable are the ones I have like the constant burning (dysaesthesia), with varying intensities that migrates all throughout my body with no warning. Sometimes I will itch incessantly around my nose, face and arms, but the most unusual one for sure is the feeling or sensation like my teeth are falling out. This is a noted symptom with severe cases. Don’t worry, I still have my own teeth but I’ll tell you it is not fun.
Currently there is still no 100% test or markers on a blood test that will confirm ciguatera. Collaborative efforts of rewinding the two years back of my record keeping, training journals and daily pain level journal; we concluded, I probably contracted the toxin while visiting my mother in the Bay Area in June of 2011 and eating fish the night before I returned to Maui.
How the first episode was revealed was upon my return to Maui that next day, June 11, 2011. I decided to paddle 10 miles the next day from Maliko to the harbor, along with my good friends Bill and Simone. I came into the harbor feeling like I was on fire!
At that time it was just on my left arm and then my lips swelled up so strangely I made jokes that I finally had lips like Angolina Jolie. I headed to Kaiser immediately, where unfortunately my amazing and supportive internist Rick Sands, MD was out and I was put through a round of tests for allergies. The usual Benadryl tabs routine, etc.
When I was able to see Rick about 2 weeks later he was very concerned and perplexed. We tested for everything and I mean everything. There was also some concern that some of the symptoms I was experiencing was similar to that of as I mentioned early, multiple sclerosis.
This was very upsetting but I knew Rick was looking out for me as he always does, so we ordered a brain scan. From that time until I had to wait for the results, my life flashed before my eyes in many different scenarios and I started thinking about what my life we be like with that disease. What in the world would or could I do for a living? It was a very tough time. But luckily the scan was clear for that.
A month had gone by and it was July 2011 and the Naish SUP race was soon approaching. I did my best to paddle and train through the burn. I was determined and so baffled how I could burn all the time like this? It was in my mouth, behind my eyes, my upper back, thighs at times, under my feet and always my left arm. Some days I would actually turn red as the toxin would move through my body.