JUNE 2014
Name: Linda
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: About five years ago my husband and I went out to eat. We both had fish dinners which consisted of Amberjack….well that night, I was up all night throwing up, diarrea, sweating and chest pains, thought I was going to die. The next day I noticed that hot things felt cold and cold things felt hot, it was terrible walking barefoot on ceramic tiles. I was severly sick for over a week where I did not even want to move because of the nausea….I did eventually go to dr. but they couldn’t do anything for me, and sent me home. I continue to have these symptons to this very day…..( I’m now 65 and this started several years ago)just now starting to come off of three days in bed from it and it was my birthday of all things. My symptons vary to degrees, sometimes I just feel like I have a horrible case of the flu, other times it knocks me off my feet (like recently) and puts me into bed. Makes me so tired, aching, eyes hurt, itch a lot, sweat a lot, and I get very depressed. I was actually happy to find this website and share my story with others who are or have gone through this horrible sickness. I have always been a very outgoing person, and this really has a bad effect on my mentaly and emotionaly…….my husband is very understanding, but I’m sure it’s wearing on him. Apparently I am one of those who will have it forever, I know I’m one who will have it for years, because I already have. I forgot to mention the chills that come with it, I freeze sometimes outside in 80 degree weather. I live at Shell Point Florida in Wakulla County, the fish I ate was served at a place that is no longer open. I will never forget that start of it that night, it was a nightmare. Thanks for starting this site, I can only pray that one day I can take something to get rid of this.
Sincerly, Linda
Linda:

So sorry to hear that you are still having severe symptoms after all these years. I also still have symptoms but they are mostly minor, reversal of hot and cold, dry mouth, sweaty feet from time to time. No one can understand what we have or are going through and I know about the depression you are feeling, glad to hear your husband understands. You’re the first person that replied that still has these severe symptoms reappearing years later, per your email please answer a couple questions;
1. When you get the severe symptoms have you noticed any trend on what triggers this to happen?
2. Are you eating fish of any kind?
Thanks,
Jeff
Hi Jeff,
I was happy to get your email.  I guess misery loves company, as they say. Now to answer your questions, I will do my best. I have noted some triggers, stress being a big one! Also too many cocktails, lack of sleep, and too much exercise….. Sometimes, none of these have to take place, and I wake up feeling horrible and know what it is right away. This last bout, the past week has been one of my worst ones. Usually I have one or two, or maybe three of the symptoms at one time. They always put me into bed from one day up to a week. Yes, I do eat fish, usually baked, I have found that flounder agrees with me, and fresh caught  grouper from this area, baked or grilled. I did eat some scallops, fried, a few weeks ago, they did not agree,I don’t think they were really scallops, but some kind of white fish. I appreciate what you are doing. Having this has made me feel alienated many times from life activities. Nice to know I’m not alone.
Regards,
Linda
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JULY 2014

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 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.

 

Mary:

 

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.

 

 

Jeff:

 

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.

 

Hi jeff

 

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.

 

Mary:

 

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.

http://www.cdc.gov/ncidod/dbmd/diseaseinfo/staphylococcus_food_g.htm#6

 

 

Hi jeff

 

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.

 

Jeff:

 

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.