Discussions By Condition: I cannot get a diagnosis.

Chronic Ciguatera

Posted In: I cannot get a diagnosis. 4 Replies
  • Posted By: tobinpickett
  • September 28, 2009
  • 07:45 PM

My brother in currently in the hospital on Oahu with severe ciguatera from a spotted knifejaw he ate August 4. The fish was tested and found to be highly toxic. His symptoms seem to resemble Indian Ocean ciguatera - hallucinations, blurred eyes, weakness, depression. At one point he had respiratory failure and was put on a ventilator in an induced coma. He can't walk or sit up for long and doesn't appear to be getting any better. We just learned of another sufferer who can't walk almost a year after contracting Ciguatera.

My question is: Are there other chronic sufferers or family members of sufferers out there? What treatments do you recommend? How are you coping with this devastating, rare, long-term illness?

I would love to compare notes with you.

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4 Replies:

  • I've suffered chronic ciguatera poisoning since December 2002. The textbook treatment is intravenous mannitol to wash out the toxins, which I'm guessing your brother has already had.I've been put on "Hysone" 10mg a safe low dose form of hydrocortisone which has helped a lot, and I use "Symbicort" an asthma inhaler that accidentally helped enormously with the neurological symptoms by getting the corticosteroids directly to my brain. My doctor had me try alternative asthma inhalers and only Symbicort helped my Ciguatera symptoms, both breathing AND concentration. Symbicort also helped my mood, and both drugs helped me get my strength back.Seven years on and I'm still sick but I can now work part time when I can find those jobs, and I'm energetic for a few hours in the evening so I can have a social life again.My brother in currently in the hospital on Oahu with severe ciguatera from a spotted knifejaw he ate August 4. The fish was tested and found to be highly toxic. His symptoms seem to resemble Indian Ocean ciguatera - hallucinations, blurred eyes, weakness, depression. At one point he had respiratory failure and was put on a ventilator in an induced coma. He can't walk or sit up for long and doesn't appear to be getting any better. We just learned of another sufferer who can't walk almost a year after contracting Ciguatera. My question is: Are there other chronic sufferers or family members of sufferers out there? What treatments do you recommend? How are you coping with this devastating, rare, long-term illness? I would love to compare notes with you.
    Anonymous 42789 Replies
    • October 1, 2009
    • 05:06 AM
    • 0
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  • Actually, there is no standard treatment for ciguatera poisoning, and there is no cure. All one can do is support the pa*tient with symptom relief, time being the biggest healer. Recently, there have been new treatments discovered for both acute and chronic ciguatera poisoning, however not all cases respond.
    nene790 13 Replies
    • October 1, 2009
    • 05:10 AM
    • 0
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  • Wow I'm really sorry to hear what a long, hard road you've had. Would you be willing to talk on the phone some time? I have so many questions about your experience, mostly relating to the early days like my brother's. Were you hospitalized? Bedridden? Unable to walk? Low body weight? These are just a few of the things Tom's dealing with. He also had respiratory failure and was in an induced coma. thanks so much for responding. The inhaler suggestion is very interesting, along with the option of hydrocortisone. I know Tom's already had steroids, but whatever he had (which helped a lot) was strong enough that the doctors weren't comfortable administering them for very long. He's off steroids right now. Regards,Toby I've suffered chronic ciguatera poisoning since December 2002. The textbook treatment is intravenous mannitol to wash out the toxins, which I'm guessing your brother has already had. I've been put on "Hysone" 10mg a safe low dose form of hydrocortisone which has helped a lot, and I use "Symbicort" an asthma inhaler that accidentally helped enormously with the neurological symptoms by getting the corticosteroids directly to my brain. My doctor had me try alternative asthma inhalers and only Symbicort helped my Ciguatera symptoms, both breathing AND concentration. Symbicort also helped my mood, and both drugs helped me get my strength back. Seven years on and I'm still sick but I can now work part time when I can find those jobs, and I'm energetic for a few hours in the evening so I can have a social life again.
    tobinpickett 3 Replies
    • October 2, 2009
    • 02:45 PM
    • 0
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  • Is he still suffering from ciguatera? I became ill from it in November 2013, and my feet are still numb and sore , and I have Chronic Fatigue.
    Thanks.
    Anonymous 1 Replies Flag this Response
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