APRIL 2016
*Name: Julie

Have you been affected by Ciguatera Poisoning?: Yes, I have had ciguatera poisoning
How did you hear about us?: Search Engine

Tell us your story: I have had chronic ciguatera poisoning for 26 years this month. I live in Hawaii where ciguatera is endemic. Yet, he ER Doctor had no clue what was wrong with me, he did not treat me with Manitol and I spent the next 3 weeks ruling out MS, Myasthenis Gravis. My symptoms were largely neurological. I was in an acute stage for the first five years. I was properly diagnosed by an amazing doctor at the UH medical school who got me into various studies trying to find me some relief. Today I have flare ups if I burn a lot of fat quickly, if I do strenuous work such as building new garden beds,, if I drink alcohol and certain foods. Extreme stress will also trigger a flare up. My symptoms are largely, extreme fatigue including cognitive impairment and tingling of my extremities, tempi tire reversal and the worst are hypnogognic hallucinations. It’s like sleep paralysis.. I take Sudafed and that counteracts the fatigue.(that came out one of the studies I was in at Johns Hopkins) There was no google when I was poisoned so I did my research the old fashioned way, in the medical school library and calling and writing letters to folks who published journal articles etc. keep blogging and educating. This is not covered in medical school and clearly doctors in endemic regions don’t know enough about it, doctors in other parts of the country have no idea what’s wrong with people who got sick on vacation
Julie:

I’m sorry, I don’t know how I missed your email back in April. I can’t imagine having Ciguatera Poisoning symptoms for that long and have only read about people like you where it never goes away. Per my story about growing up in the Florida Keys and being 58 years old when I got Ciguatera, I was amazed the local hospital here in Boca Raton, Florida didn’t know what was when I told them what I had.
It definitely doesn’t get as much awareness as it should and I’m sure this is because its miss diagnosed so often, I see articles from time to time and post them on the site but that’s about it. I would welcome the opportunity to talk to you about your story, please fee free to call me anytime at your convenience, I’m on EST.
Sincerely,
Jeff