JULY 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 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..
Jeff
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*Name: Paul

Have you been affected by Ciguatera Poisoning?
How did you hear about us?: Search Engine
Tell us your story: My girlfriend and I have recently purchased a boat and are heading to the Bahamas for 3 months. I was planning on living off a mainly fish diet. After some research I learned about this awful disease and now I’m afraid to eat any fish because of the scanty details on the internet. I don’t know what is safe and what isn’t. I believe various tuna and mahi mahi to be relatively safe but I don’t truly trust any fish. Any tips other than the 6 lbs rule and not eating any grouper, king mackerel or baracuda? I just want to eat fish and not be afraid that I’m poisoning my guests or myself in the process. Cheers, Paul
Paul:

Tuna, Mahi, & Wahoo should ok as they’re fast moving deep ocean fish that eat mostly bait fish. We do a lot of Deep Dropping in the Bahamas and catch Yellow Eye Snapper and Queen Snapper and have never heard of anyone getting sick from eating them.
You can also catch Grouper from deep dropping and I’ve had it now a few times on ones that are 5-6 lbs, the thought there is we normally fish in 500 ft and deeper so the algae that the fish eat that causes Ciguatera and make us sick would be harder to grow in deep cold water, ” just theory not fact”. 
Chumming and catching Yellow Tail Snapper should be ok as they don’t get very big and are very good eating.
Definitely stay away from any Barracuda & Mackerel!!
They say any fish can have Ciguatera, but limiting the size, again in theory, makes it less likely the fish would have the toxin. I don’t eat a lot of any one fish at the dinner table now especially Grouper and try to mix it up as much as possible thinking that if one fish did have the toxin the symptoms would be less severe by not consuming that one entire fish that had it.
Just curious what Island are you going to?
Jeff
Hi Jeff,

Thanks a lot for the information, I’m quite concerned as I don’t want to get sick on my three month trip. We’re planning to “gunkhole” along to the Exumas starting in Biminis, Berries, Nassau etc. Should be a lovely trip. Going to try and eat fish as our source of protein and actually invest a set of fish scales to weigh them.
Thanks again,
Paul
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 *Name: Juliette Gale

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: Hi my name is Juliette, I am 46 years old and have just been diagnosed with ciguatera poisoning after eating Bonito fish in Bermuda. My husband and I are in the process of moving to the island so we popped over for a flying visit to go house hunting. We stayed in a hotel at Tucker’s Point for two nights spending the Sunday and Monday evenings there. We were due to leave Tuesday night on the BA flight back to the UK. I’m not a lover of plane food so I decided to have a main course for my lunch and ordered the catch of the day. My husband had soup and a salad. The fish was Bonito fish and it tasted delicious. That afternoon I visited the spa and had an afternoon nap. Five hours after eating my lunch I woke with a nasty stomach ache, I had to get packed and ready for our 7.45pm flight but had to keep stopping as the pains in my tummy were very uncomfortable. We arrived at the airport lounge and I had to run for the loo there I had horrendous diarrhoea. I spent the whole time waiting for the flight running back and forth. The flight home was so horrible six and a half hours of hell. I ran to the toilet at least 20 times eventually I told the air hostess and my husband asked for some help. They gave me Imodium and an anti sickness drug and got medics to meet the plane. They checked my vitals which were fine and got me a wheelchair as I was too weak to walk. When I arrived home I went to sleep for an hour and woke with terrible pains in my arms and legs then the itching started. Burning that felt like it was coming from my inside to my outside. My legs and feet felt like they were crawling with ants stinging and burning my skin. I had burning in my genitals and my mouth and when I washed my hands or touched anything cold they were burning. I saw three different doctors within the first few days but they just gave me anti histamine that didn’t touch my symptoms. One night I went to bed and the my skin was on fire I have never experienced anything like it. On the Saturday I saw a dermatologist and he said he thought I may have Scromboid poisoning. During this period I continued to eat fish, nuts etc and I had a couple of glasses of wine on the Saturday night. I woke up on the Sunday morning feeling dreadful and went to the hospital in the early hours of Monday morning. The doctor didn’t know what it was so gave me six days of steroids I took them for a day and then a friend said to go to the hospital for tropical diseases in London. We went on Monday and they diagnosed Ciguatera. They have put me on 900mg of Gabapentin and it is helping some of the symptoms but I am totally spaced out. I have spent the last five days in bed feeling rotten. My hands burn, my legs ache, my mouth burns, I have had horrendous migraines, unbearable itching and night time is awful. The cold shivers then the itching is keeping me awake plus I find breathing cold air in my nostrils burns like crazy. My husband moves to Bermuda in January and I am far too poorly to even imagine the possibility at the moment. I have cut out all the bad foods from my diet but didn’t realise chocolate was a problem so will now stop that too. I have had lots of tears today as I feel very despondent and that isn’t my nature. I am planning to start training to become a yoga teacher in February and have been having lots of personal training for months to improve my fitness, I feel like that has all been taken from me. Exercise has been a massive part of my life for 30 years and to not be able to do it is very upsetting. What a nasty toxin this is and for there to be no cure is incomprehensible to me. I just hope with time things will improve but it feels a long way off. There is so much negative reporting online but it is the only way to get any information as no one has heard of it in the U.K. THANK YOU for your blog i wish everyone a speedy recovery.
Juliette:

So sorry to hear your sick but glad someone finally diagnosed what it is for you, hopefully the symptoms will start to subside now that you stopped eating fish and other trigger foods along with alcohol. Definitely hold off on the exercise until your feeling very good, I tried to also and felt awful after, it does trigger the symptoms with increased blood flow from what I understand.
I know its hard but try to keep a positive attitude, you should get better it just takes time for the toxin to run its course, I had a very severe case like yours and did get better, most people with severe cases start feeing the symptoms subside within a couple of weeks.
Please keep me posted on your progress..
Sincerely,
Jeff
Dear Jeff
Thank you emailing me back. I’ve had a better day today but I’m not getting my hopes up.  Your blog really helped me and I read everyone’s stories. Thank you for writing it and sharing it.
Best wishes to you and happy Christmas.
Juliette
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 *Name: Tim

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: This is my 3rd ciguatera episode,and is going into its 6th week.I was hoping for some new treatments or encouraging news,but so far I have none, Any body got anything new….
Tim:
I’ve heard nothing new on treatment for symptoms, 6 weeks is a long time so the symptoms should hopefully start to subside soon, it just has to run its course as you already know having it for the 3rd time. Curious about what kind of fish it was and what region the fish came from..

Thanks,

Jeff
 Black grouper from the abacos Spanish Cay, This episode has come and gone and reoccurred for the second time just last week ,and is just now a week later I am getting better,the joint and muscle pain,fatigue were worse than ever ,I barely could get out of bed,now the pain is mostly gone, but the fatigue continues..
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*Name: Andrea & Allan

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: On the 3 November 16 my husband and I started a holiday in Rarotonga in the Pacific Islands. On the first night we shared a raw fish salad and became incredibly sick with violent gripes, diarrhea, severe muscle and nerve pain throughout our legs, shoulders, arms, feet , hot/cold burning sensations in hands and feet. My husband came out in an itchy rash where he wanted to tear his skin and he had headaches. Today our symptoms are minor compared to 3 weeks ago but still there. How do we know when we can eat fish again. Today we are out fishing in the Coromandel New Zealand and have caught 8 large ocean going snapper and we would both just love to sashimi some and eat it raw. We love our fish & shellfish and can’t wait to eat again. How do we know it’s ok and if it’s too early what happens, do we go back to the symptoms at the beginning??
Andrea & Allan:

You definitely had ciguatera and luckily it sounds like as bad as it was for the most part it has subsided quickly as is the case for most people. The tough part is your questions on whether you should have fish again this soon. I personally would wait a few months before eating fish again only based on the research I’ve read, its my understanding that the symptoms can come back after eating any fish to soon, this is only based on information I’ve read.
If you do decide to try to eat fish again now, I wouldn’t eat a large amount from any one fish and suggest that you have very small portions from a few different fish, this will hopefully minimize the chances of getting sick.
I only eat Mahi, Tuna, Wahoo for the most part these days and small yellow tail from the reef. I do eat medium sized grouper & snapper from deep dropping  in 300+ feet of water and had no symptoms, not sure if this is what you mean by ocean going snapper? The risk is definitely less eating fish from deeper waters..
Hope this helps and good luck!!
Jeff
Jeff,
Thank you very much for your reply. It is really is extraordinary how little medical research and treatment trials there have been. The Islanders are all very aware of it and most have suffered from it. There is a Healer in Rarotonga named ‘Pa’ who has remedies (native plant potions)  but you need to be on the island to get help. Sadly we only found out about him on our last day, however he travels all over the world as an invited speaker at medical conferences and is highly regarded. Anyway I thought I would tell you in case you had any enquirers from Rarotonga.
Thanks again,
Andrea
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*Name: Olle

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: Hi Jeff 4 Years ago i fished deep sea and brought home some fillets of a 20 kg Wahoo. 2 hours after the meal I started serious womiting/diarrea all night (near dying sensation). I work as a MD/GP and I have so far believed my sympoms where NOT from Ciguatera. I am familiar with Ciguatera since I often fish in warm waters. The morning after my Wahoo steak I felt just fine and my wife had the same dish without any sympoms. The problem is that I cannot think of any other source for this typical food poisoning. During the whole day before getting sick I ate nothing that should raise suspicions. I know that Wahoo do not go for reef fish and should not carry Ciguatera. Have You any info on the probability of Ciguatera in Wahoo? I am now again traveling to the Caribbian (Cayman). I love to eat fish. If You were to choose 3 Spices that was really safe to eat–what is Your top picks? Best regards Olle Ps: Fine site! MD:s often deal with neurological symtoms with no etiological explanation. Ciguatera is mostly unknown in Europe but many travelers make Ciguatera info important.
Olle:

I dont believe you had ciguatera from the wahoo since your wife ate the same fish and had no symptoms, I think something else must have made you sick, also getting ciguatera from wahoo would be extremely rare and I’ve never personally heard of a case even though they say any fish can have it.
I eat Mahi, Tuna, Wahoo and Yellow Tail from the reef, I have had some small grouper since getting sick with no symptoms but only if I catch the fish and cook it myself and have small portions, I would never eat any fish from a restaurant again as you never know for sure what they are actually serving unless you are certain.
Hope this info helps, Enjoy your Trip!
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*Name: Tandi

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: Hello. First of all, I was in Reef or Madness, the short documentary on Ciguatera Toxin. I have had it for 9 years now. I got it on my honeymoon in Fiji. I am 50. 7 kids, and it has not only changed my life, but also my children’s and husband’s life. I have all the symptoms, just like everyone elses story, and still suffer to this day. We also know of more patients who have had it for decades. There is a support group on Facebook called Ciguatera Support Group. It helps, as your blog is, and it simply has put me to tears knowing of soooooo many people who have it, even though I knew, reading the stories, breaks my heart. I ate Barracuda, and yes, it was the best fish I ever ate! I made business cards, to hand out to people to bring awareness of this painful toxin. They say if you eat the peice of fish that’s closer to the liver or brain, it has more toxin. It’s changed my life forever. Thank you for bringing awareness too! Too much to write, but not feeling well right now. Will return to write more when I can. I appreciate you! Thank you, Tandi Toten Wall
Tandi:

I know your story very well and and the Reef or Madness video along with the fact that I grew up in Key West and have know about this all my life is what prompted me to create the website. Its INSANE there isn’t more info and awareness out there after all these years.
I’m so sorry your are still suffering to this day, when I found the video and saw all three stories yours was heart wrenching and I can remember thinking I was going to have the symptoms for years, I was severely sick for 60 days or so but still felt the symptoms for about 9 months, the only thing noticeable to me now 4 years later is the reversal of hot & cold.
Feel free to call me anytime if you want, I always wondered about you after I got better and I’m shocked you still have symptoms. I recently got an inquiry from NOAA and did a phone interview with a scientist who has been studying ciguatera for quite a while, they’re trying to come up with a test to detect it.
Look forward to talking to you, again only if you feel up to it..
Sincerely,
Jeff Herman
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 *Name: Mathieu

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: Hi, I have 6 months with cigüatera poisoning. i was feeling much better. Dizziness and fatigueness just in my legs from time to time when I did a lot of physical work. I was recently diagnosed with what they think is a stomach flu due to vomiting and weakness this weekend. Today, I have been feeling the same fatigueness in all my body, pain and really bad stomach cramps. Could the flu affect my Cigüatera symptoms? Has anyone had a flu with cigüatera?
Mathieu:

I’ve never heard of the flu triggering the symptoms but feel its certainly possible that it could being its a nervous system disorder. You said you’ve had ciguatera for 6 months now,  please let me know what kind of fish made you sick and where you are located?
Thanks,
Jeff
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 *Name: Charles

Have you been affected by Ciguatera Poisoning?:

How did you hear about us?:
Tell us your story: Florida Sportsman. I do not have Ciguatera. I live in SW Fl. I fish for and eat mangrove and lane snapper and red grouper. Have you heard of cases in these fish?
Charles:

I’ve never heard cases of mangrove or lane snapper but all grouper have a chance as far as I know, the main thing to keep in mind with the grouper is the size, I’ve always heard to stay away from the much larger fish.

Jeff

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*Name: Laura

Have you been affected by Ciguatera Poisoning?:

How did you hear about us?:
Tell us your story: I got ciguatera for almost four months now. I still get light burning sensations in my skin and fatigue symptoms when I´m too active, but they´ve improved with time. I have a strict cigi diet and drink peppermint tea (which I´ve heard it has Rosmaniric acid that helps). I am also taking some medicines that have helped my neuropathy symptoms as well. I´m dying to get out to the beach because I used to snorkle on a daily basis or scuba sometimes. Does anyone know if the sun and getting in the sea can make symptoms worse?
Laura:

So sorry to hear you’re still having symptoms after 4 months. I’ve never heard of just being out in the sun or in the water making symptoms worse, but I do remember in the beginning when I was outside and began to sweat I would feel the symptoms getting worse, I’m pretty sure anything that coincides with the nervous system like sweating, exercising or strenuous activity could trigger symptoms, I would take it slow and see what happens.
Jeff
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*Name: Sara

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 live in Maui, Hawaii, but I was vacationing in Cebu, Philippines. There I either ate Spanish Mackerel or Kingfish. I was fine after the meal, but the next day I developed a rash, and some GI symptoms. The day after that I became extremely dizzy, lightheaded, weak, foggy, had heart palpitations, and numbness in my face and left arm. I was in a remote village and I thought I was going to die. The doctor in the Philippines diagnosed me with dehydration; however, 4 months later, and I’m still feeling symptoms. The symptoms also now include fatigue, weakness, ringing in ears, severe daily headaches, numbness in hands at night, stiff neck, joint pain, and abnormally low blood pressure. I returned to Hawaii and spent several months navigating the medical system, and getting absolutely no where. Doctors were clueless, and started prescribing anti-depressants, convinced it was all in my head. My neurologist sent me in for audiology testing and a myriad of worthless, unrelated tests. My boyfriend’s roommate, however, had ciguatera before, and suggested it may be what I’m suffering from. I have recently removed all the trigger foods from my diet (including seed oils – this is HARD!) and I’ve had a string of “good” days in a row. Which is absolutely amazing. Today I feel kinda crappy, but I also did a lot more physical exertion this week than I had been, so I suspect that is the cause. I don’t have the “characteristic” reversal of hot and cold, and I also don’t have a doctor’s diagnosis, but as an otherwise healthy 27 year old female, I can’t think of many other things that would cause my symptoms and begin so acutely after the ingestion of fish. After 4 months, my string of good days in a row were so amazing, and gave me a sense that there is a light at the end of the tunnel. I hope that if I continue to rest, avoid physical exertion, and avoid trigger foods, I may be able to find relief. Also – I supplement with iron, B-vitamins, ashwagandha (a nervous system calmer: I highly recommend), and a blood/lymph cleansing tea.
Sara:

So sorry to hear you have ciguatera but glad you finally know what it is. As you will see reading my story and through the stories on the blog this is a common misdiagnoses by many doctors which is extremely disappointing at this day and age. Since its been 4 months you should hopefully be close to it finally running its course through your system and staying away from the trigger foods should also speed up the process.
Keep that positive attitude!! I truly believe it helped me as I started feeling better and the symptoms subsided. Please keep me posted on your progress and feel free to contact me anytime with any questions or if you just want to talk to someone that knows what your going through..
Sincerely,
Jeff