Have you been affected by Ciguatera Poisoning?: Yes, I have had ciguatera poisoning
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Tell us your story: I caught ciguatera three months ago by eating hog fish at a restaurant in key largo. I appear to be getting worse. I have restricted my diet to fruit, non dairy bread, steak, dried pulses, quinoa, buck wheat, couscous and root vegetables and mushrooms.. The only symptom i seem to have escaped is the hot and cold reversal. I am at my wits end. I have lost a lot of weight but more importantly have lost muscle but when i try to go back to yoga that too sets my symptoms off. I just don’t know what to do.
Sorry for the delayed response I was in the Abacos, Bahamas this past week and had no internet access. So sorry to hear you got sick, I saw your second email and YES, stay away from mushrooms & grains, please see below what I got from poison control a couple of years ago. It obvisouly sounds like you have a severe case like I did, I was really sick for 3 months and had lingering symptoms for months after. Almost 2 years after now I still have reversal of hot and cold but not as severe as the beginning, I still feel slight symptoms from time to time and people think I’m crazy. I wish I could tell you something that would help you, but nothing ever helped me, just time.
Please answer a few questions;
1. How big was the portion you ate?
2. Did anyone else with you get sick?
3. Did you contact the restaurant and ask them if anyone else got sick?
From the document faxed to us by poison control it said to avoid fish, shellfish, nuts, coffee, alcohol, chocolate, mushrooms and grains. It also said that exercising could exacerbate the nervous system symptoms and should be avoided for months.
Many thanks for getting back. Exercise, even gentle yoga causes me severe symptoms.
It was a restaurant in Key Largo. They were not interested and in fact I cannot seem to get them out of their complacency in relation to their supplier. Instead their reply was their supplier was reputable and they have safe handling procedures despite me sending them information and a link on you tube to a video called “reef or madness”.
I was with my husband and he did not have fish but lamb. They will not tell me if others were affected but also many people would have been visitors, who like me, would only discover over the coming days what they had been infected with. There were four fillets on my plate and to be honest if i had listened to my body i should have not eaten any more after the first one. I put the queasiness down to it being too oily…..how wrong i was!
I certainly know just how debilitating this can be. By the way I did contact poison control but am not sure if they follow up with restaurants when this happens.
A very personal question. I am terrified of giving this to my husband and to be honest he is terrified of catching it seeing what it has done to me. Do you know when it cannot be transferred through bodily fluids to a partner? I cannot find anything anywhere nor do the doctors on island know.
By the way there is such an ignorance on island amongst expats about ciguatera that I have contacted the resident magazine in the hope that they will do an article. We all knew about barracuda but not the rest.
I don’t positively know but its my understanding that it is not transferred by body fluids, its a “toxin” not a “virus” so I don’t think a toxin can be transmitted from one person to another, you should ask a doctor to confirm. Did you get any advise from a doctor?
Please check this link below from the CDC, it says toxins can’t be transmitted from one person to another.
Spoke to florida poison control yesterday. They confirmed that mushrooms and grains are not associated with onset of symptoms though for certain individuals they may be.
He confirmed and I have found a few cases where the toxin was transmitted via breast milk and to an unborn child and a couple of cases where it was transmitted to a sexual partner. That said. Someone in cayman said they found sex impossible painful in line with the literature.
This is my fifth day symptom free. Knocking all exercises, even yoga, seems to have helped. We make our own dairy free bread and for the time being am sticking to guinoa since it is not a grain bit botanically related to the spinach family.
Of note for suffers tis to perhaps understand that if they have a reaction to chicken or pork it may be because of the fish meal they are fed rather than to the meat itself. I have just discovered antibiotic free, free range and veg fed chicken which causes me no adverse effects.
They is another guy in cayman that 20 years later he still can eat fish or drink beer!
I am entering my fourth month and can hardly believe how bad the symptoms can be. Putting information on your website about food and what to avoid would be useful but so too would be warnings about hidden ingredients even in seemingly “healthy” options. Sea salt is in almost every healthy product you buy and has caused me real difficulties.
Keeping healthy on such a limited diet is challenging but not impossible. The importance is to take vitamin and mineral supplements.
I’m anxious to get the message out there on such a devastating illness
I am in Vancouver now and managed to find a chicken, anti biotic free, free range and guaranteed to be fed only veg. It was expensive but worth it. I have had no symptoms from it. I guess the thing also to say to people is not to assume that food is pure. Ask the questions on what it has been fed and it will surprise you to find out that fish meal is used extensively.
In Vancouver there are a lot of healthy looking eating side bars but it turns out the food in many cases is not prepared on site so when i ask staff what is in the dressing they have no idea.