Thursday, August 27, 2009

My (ongoing) journey with ciguatera.

I am sharing my story in hopes of connecting with others to learn from each other. Surely each case is unique but there may be patterns we can detect to aid our recoveries.

I spent 6 weeks in southeast Asia last winter (mainly Thailand, also Singapore and Cambodia). I felt ill there much of the time with what may have been typical heat exhaustion/ travelers' stomach type maladies. Upon returning home, I felt quite sick, as if something very poison was attacking all of my systems. I had major gastrointestinal discomfort and pain (and still do) ranging from constipation to diarrhea, plus pains from the top of my chest to the bottom of my torso. I had cardio symptoms including rapid heart beat. I felt panicked frequently and still feel quite scared about my health. I began to have neurological pain- tingling in my limbs especially hands, then developing into sharp parasthesia pains, which can feel like you are being bitten by bugs, poked with needles or knives, or just itchy. I still have this daily and it is everywhere.

Strange symptoms include wrinkled fingertips (raisin-looking) any time I'm near cold air or apply any pressure to them. For months I had a feeling of pressure in my head, constantly popping ears, and swollen veins on my forehead. Now I have intense fatigue at times. My eyesight gets screwy during flareups- a bit blurry with floaters, once I even saw flashes. It's been hard to keep weight on and I am prone to dehydration- I do not react well at altitude as it triggers tachycardia (it never did before). I get mild headaches quite often, and have had odd moods- which of course could be related to dealing with having a neurotoxin.

Medically, the doctors first thought I was fine and just anxious. Initial tests all came back normal except for low potassium which was easily corrected. After I was still feeling badly and had many tests to rule out other causes, my general practitioner and neurologist made a probable diagnosis of ciguatera. I had too many tests to list, but they include imaging of brain, chest, and abdomen; tons of blood, urine and stool analysis; cardio workup; and EMG/nerve conduction. At one point I had high protein in the blood but that corrected. I have also showed trace blood and bacteria in the urine, cause unknown.

Once I got the diagnosis in April, I began research and an action plan. I found everything I could about ciguatera and emailed world experts- one of whom sent me the most up to date info available. I followed the recommended diet of no alcohol, caffeine, nuts and seeds- though seeds and some nut oils are too difficult to avoid altogether. My neurological symptoms did decrease on the diet, though gastro problems have been worse off and on. Oh, how I miss coffee and chocolate, wine and peanut butter!

In August, I decided to try phasing back in the foods one at a time, keeping my diet otherwise controlled. The results were not good; I experienced bad flareups with cashews, wine, beer, and even a tiny piece of chocolate. The flareups seem to last a few days. So I'm back to the restrictive diet.

Overall I am doing my best to keep a hopeful outlook but this is pretty frustrating- the not knowing if and when it may get better. What has it been like for others? How long til you felt better?


  1. I posted a long comment, but blogspot deleted it. I've had Ciguatera for 8 years. My most helpful medication is Symbicort and Hysone. My Ciguatera page is

    I'm glad you've started a support page! I look forward to hearing more of your journey.

  2. Thanks! I'll read your blog right away. Best of luck and please stay in touch. So you still have it-? Bummer.

  3. IWoolf- your blog link doesn't seem to be working- it is typed correctly above?

  4. IWoolf.. I'd love to know more about why those 2 meds- they are for asthma and fungal/skin problems right? Have you had problems with that? I actually had a bad case of bronchitis lately and used inhalers, and have had recurring yeast infections, but didn't think either was related to ciguatera. Maybe we are uncovering a new symptom pattern here.

  5. Hi Ruby, the link is correct, maybe you need to copy and past it?

    Symbicort is for asthma, I was prescribed it when I had bad bronchitis on a trip to Canada's winter. As a side effect it helped clear up inflammation in my brain. I was reading Dr Jay Goldstein's books on treating Chronic Fatigue Syndrome, and he mentioned how corticosteroids could cause dilation of constricted blood vessels in the brain, letting oxygen filled blood return to areas that had been restricted by inflammation.

    I think Symbicort works this way as a side-effect, as a corticosteroid that is quickly absorbed in the lungs.

    The Symbicort had a bad side-effect of a yeast infection in my throat. I solved this by always using a tea-tree oil toothpaste, which keeps the yeast infections away from my throat.Its a natural anti-fungal herb, sold in toothpaste in health food stores. It should work against any yeast infection.
    Just beware that pure tea-tree oil undiluted is likely to hurt your skin, so it should either be massively diluted, or in toothpaste or ointment form.

    I was prescribed Hysone as a low-dose hydrocortisone by my gastroenterologist Professor Borody directly for Ciguatera. Again, the intention is to have it act as an anti-inflammatory agent, against the inflammation caused by the ciguatoxin, in my lungs, digestive system, and nervous system.

    They're not a cure, but they've made a giant difference to my life, letting me get out and about and socialise, even if I can't work more than part-time.

    Fortunately I haven't had any external skin problems from Ciguatera.

    Let me know if you want to talk by email or skype, and if you still have trouble surfing to

  6. Thanks much for the info and I was able to read through the blog. Sounds like your case is worse than mine- how frustrating and I'm so sorry. I hope we both recover fully someday. I would be up for communicating more- I am swamped at the moment (just started new job) but will be in touch. This is a priority though- it seems to me that we have to be our own researchers, experiments, scientists, etc. to try to figure out what works and doesn't.

  7. Question- have you read "Ciguatera seafood toxins" the book? I came across it online but it's $200 and looks more like science-level stuff than practical patient info, but curious whether it may be worth the $. I doubt it's in my corner library:)