Long term affects of Ciguatera

[caradow]

As a physician working periodically in the Caribbean I have treated several cases of Ciguatera. These cases have at times been mild with simple diarrhea and abdominal cramping to patients becoming hypotensive and ending up in the ICU. Unfortunately after my brief encounter these individuals were lost for follow up.
I would be interested to hear from actual individuals who have contacted Ciguatera regarding any long term effects that may still be present. Especially any of you who have been unfortunate to have more than one infection. Were your symptom worse the second time? How ofter does your symptoms return? Is there any food or beverage that exacerbates your symptoms?
I was born in the Caribbean and grew up eating Barracuda which incidentally one of the best tasting fish in the ocean. However now I never eat Barracuda but continue to eat other reef fish that may very well carry the toxin. I guess it may just be a matter of time before I suffer the fate of some of my patients.
Thanks for your time.

[landsend]

I contracted ciguatera in Venezuela 40 years ago. symptons: Hallucinations and fever. Hallucinations were great. I was 18 years old, starving on an island and I speared parrot fish and ate them. I've never had any recurrences of the sickness.And barracuda in the eastern carib is considered safe, and Delicious.

[JPA Cate]

Originally Posted by caradow

As a physician working periodically in the Caribbean I have treated several cases of Ciguatera. These cases have at times been mild with simple diarrhea and abdominal cramping to patients becoming hypotensive and ending up in the ICU. Unfortunately after my brief encounter these individuals were lost for follow up.
I would be interested to hear from actual individuals who have contacted Ciguatera regarding any long term effects that may still be present. Especially any of you who have been unfortunate to have more than one infection.

I have had it 3 times.

Were your symptom worse the second time?

My symptoms were worst the first time, I felt sick for some days, in addition to headache, nausea, and tingling, 2nd and 3rd, about the same. Gastrointestinal distress, tingly mouth, itching.

How ofter does your symptoms return? Once the acute phase is over, did not experience them again. However, did notice that taking alcohol would make us itch. So we gave that up for 6 months, and that was long enough for the symptoms to not recur.

Is there any food or beverage that exacerbates your symptoms? I imagine more ciguatoxic fish would have, but we gave up the fresh fish for a very long time.

I was born in the Caribbean and grew up eating Barracuda which incidentally one of the best tasting fish in the ocean. However now I never eat Barracuda but continue to eat other reef fish that may very well carry the toxin. I guess it may just be a matter of time before I suffer the fate of some of my patients.

From what we have read, although your liver evacuates ciguatoxin slowly, you'll never lose it all, and it would be safer for you (like us) to avoid those luscious warm water fish. Sorry.
Thanks for your time.

Some years back the University of Hawaii did a lot of research on ciguetera, and for the severe hypotension cases, was recommending mannitol IV for it.

Ann

[rognvald]

I am very selective in the fish we consume: dolphin, smaller snappers and grouper, grunts, mackerel, sea trout, hogfish, halibut, pompano, red fish, small tuna, etc. We have never had ciguatera from any fish I caught. However, in Miami, I bought and consumed a commercially prepared fish spread and within hours, I had a tingling sensation in my mouth, light-headedness, heart palpitations and a general feeling of anxiety. It lasted several hours before dissipating. I never had any residual effects(some on this Forum might dispute this revelation!). However, one of my friends who was an avid fisherman ate a large kingfish and was hospitalized for three months with vertigo, diarrhea and vomiting and claims to still feel the effects today, 20 years later, that also attacked his central nervous system. This is a very serious form of poisoning with potential life-long effects. We never eat Barracuda from anywhere. Period. Good luck and safe sailing.

[s/v Jedi]

Draw a straight line through Cuba and Martinique. South of this line you can eat small barracuda, groupers etc. North of that line, or older fish, the risk is too high.

[Jim Cate]

G'Day Caradow,

Thanks for introducing a professional's interest in the problem.

I'll add to Ann's post... we ate the same fish at the same times!

First case, a portion of a large Spanish Mackerel, caught outside the reefs south of Il de Pins, New Caledonia: for me, it was general and somewhat severe general malaise, some itching, and eventually the canonical reversal of hot and cold. The latter was what finally clued us in as to what was wrong. The symptoms persisted for a week or so, gradually subsiding. It was some years ago, so my memories of exact sequence are suspect.

Second case, a few years later, was a large Giant Trevally, caught in the northern lagoon of New Cal, an area reputed to be cigua-free. We had one of the Cigua test kits then marketed, and used it with a 'safe' response. The kit was a few days past it's expiry date, and apparently was no longer valid. My symptoms were much the same as the first time, but with less of the hot/cold reversal and more itching. They subsided within a few days. BTW, had we not had the test kit, we would have never eaten any such fish.

Third case, about 5 years later, was from a very small, young Spotted Mackerel, caught in the Belep group, far north lagoon area in New Cal. Local knowledge said that these small fish (~80 cm long) were yearlings, coming into the lagoon for their first mating season, and that they were always OK. We asked the local women if they wanted a portion (heh, put your money where your mouth is!) and they were happy to have it. Lesson learned: the locals don't know it all, either! This time the symptoms were more in the GI tract for me, but with the typical itching and malaise. Again, within a week we both felt ok again.

In all three cases, we ate only one meal from the fish.

As far as I can tell, I have no chronic long term symptoms, but we are damn selective about what fin-fish we eat. We do not fish in new Cal waters at all, and even pull in our (generally ineffective) lines well before we make landfall after ocean passages. However, one of our closest friends was stricken in Vanuatu over twenty years ago. He damn near died... a singlehander, he sought aid at the Vila hospital, from visiting GPs and even from the local "witchdoctor" Nivan. He was comatose on his boat much of the time for a couple of weeks, with other yotties taking turns looking after him... "go see if Jules is dead yet" duty. He had persistent and severe ongoing symptoms for some years, with alcohol causing them to reappear, any sort of seafood doing likewise, extreme sensitivity of his skin to touch, especially if it was hot IIRC. Found it very uncomfortable to wear even a light cotton shirt. He is an infrequent participant in this forum, and I could try to put you into contact with him if it iwas of sufficient interest to you.

If your research is at all productive, I would sure be interested in your conclusions, either through this thread or by PM.

Cheers,

Jim

[caradow]

Originally Posted by s/v Jedi

Draw a straight line through Cuba and Martinique. South of this line you can eat small barracuda, groupers etc. North of that line, or older fish, the risk is too high.

Well Jedi I have treated several cases south of this line.
However did not ask how big the Barracuda were which I should have.
Have witnessed Cubans who tend the lighthouse at Guana del Esta (which is south of Cienfuegos on the southern coast) spear some fairly large Barracuda and eat them without apparent problems. Quite honestly I have heard rumors that the Cuban government puts workers out there for months at a time and sort of forgets about them. So guess eating Barracuda is better than starving to death.

[s/v Jedi]

Originally Posted by caradow

Well Jedi I have treated several cases south of this line.

However did not ask how big the Barracuda were which I should have.

Have witnessed Cubans who tend the lighthouse at Guana del Esta (which is south of Cienfuegos on the southern coast) spear some fairly large Barracuda and eat them without apparent problems. Quite honestly I have heard rumors that the Cuban government puts workers out there for months at a time and sort of forgets about them. So guess eating Barracuda is better than starving to death.

The line goes through Cuba, meaning the south coast is safe to eat and the north coast certainly is not.

We too met people south of this line getting sick... sometimes from the same fish others ate without problems. In all those cases the people had ciguatera poisening before...

[Alfred_Buchi]

Reviving an old thread here, but hoping someone may have some experience with long term Ciguatera issues.

Our only diagnosis is from internet research, as our primary doctors are not familiar and really not that interested in helping us figure this out.

Approx 3-4 months back my wife and I went out to an extremely expensive sushi place. We're frequent sushi patrons but had never eaten at this place before (out of our budget normally). No history of any food allergies with either of us.

We ate pretty much every fish on the "ciguatera high risk" list. Barracuda, various Jack, various tuna, and some crab, shrimp, and pretty much everything else.

That evening I had a tingling tongue like when your foot falls asleep. This persisted for about 24 hours. I don't know why at the time this didn't seem like a huge deal, I thought maybe I burned it on the miso soup.

Around 24 hours after eating I had joint and muscle soreness. Really odd soreness in forearms and calf muscles. Inflammation in hands/knuckles. Tingling in the hands when I sleep. Again, I kind of thought I was dehydrated, or worked out too hard. I'm a mountain biker and sore hands and forearms aren't uncommon. Though the tingling was freaking me out a little.

The rest of the week both of us experienced diarrhea and abdominal cramping. Wife was extremely nauseous but I had minimal nausea.

Both of us went to urgent care separately. She was told she should take a pregnancy test (negative) and I was told to take a stool test to rule out worms.

I did have blood work done and things seem normal, though slightly high bilirubin levels which indicate stomach inflammation, which I did not need a blood test to tell me I had, hah.

Fast forward nearly 4 months and I've had lingering fatigue (like really depressing tiredness), muscle and joint pain (though not as bad as it was initially), and occasional tingling in my hands when I sleep. We're realizing an association with stomach soreness and cramping that comes every week or two (right when we start to feel better we seem to feel bad again) that aligns with eating seafood. I had a shrimp enchilada and the next day stomach cramping and diarrhea were back after not having any issues for weeks. Two days later was having tingly fingers again. It seems like alcohol could factor in to this, but I haven't stopped drinking entirely long enough to see results (took off two weeks but didn't notice any change when I went back to having alcohol here and there).

Hoping someone who has also had long term symptoms could help provide ideas or experience with similar symptoms. To me the timing and the fact that both of us have such identical symptoms almost has to be related to that sushi we had, and ciguatera lines up with everything we're experiencing.

[GordMay]

Greetings and welcome aboard the CF, Alfred.

[JPA Cate]

Hello, Alfred,

Welcome to CF.

Sorry to hear of your experience. I'm finding it odd that shrimp should have set you off if all you have wrong is ciguatera poisoning. Our friend who almost died from it an had all the horrible symptoms for so long was able to eat no finned fish for quite a while, but able to eat shellfish, especially filter feeders.

We (CF) have a member here who impresses me as a very trustable doctor, <ben solomon>. While ciguatoxin is not his specialty, I bet he would answer a PM from you, and might be able to point you to someone who could help clarify your situation.

High bilirubin counts are usually with jaundice--liver malfunction, but since ciguatoxin accumulates in the liver, it seems possible to me, only a lay person, that your high count was due to ciguatoxin overload. Your liver will slowly excrete it, but not get rid of it entirely. Since our exposure, we have been able to eat cold water fish, and of course, fresh water fish.

We did find that something as innocuous as a beer would re-trigger symptoms, and we knew people who carried a fork with them visiting, to use to scratch with, if they took alcohol. I stopped all alcohol for 6 months, and after that period, have been able to take it without symptoms coming back. Finding out what you can eat and when was for us a trial and error situation, as we did not have anyone to guide us with it.

Obviously, for you guys, it is going to mean a long term change of diet. Just my opinion, but what I am guessing has happened for you and your good lady wife is that you had built up a loading dose from eating the barracuda and other predator fish, so that even a slightly ciguatoxic fish could trigger symptoms. The good news in this is that pelagic fish you catch way out to sea will probably be safe: however, NOT safe, if they are hanging out around New Caledonia's outer reefs. And I imagine that would extend to similar geographical settings. You would have to be very careful, for instance, around the Australian Great Barrier Reef. Very deep living fish will also be safer, when you start eating fish again. In New Caledonia, that is one, called "vivaneau" in French. You can do a little research and find out what that is in English, I do not know it. Also, Orange Roughy, if you can find it, is another deep living fish that are not ciguatoxic.

I am sorry to bear sad tidings for you, but do take this seriously. As to long term effects, they do vary. And, at the same time, your liver has been affected, and I don't really know the long term effects of that, for anyone. As I have had hepatitis, from a blood transfusion, my liver is probably a weaker spot than some; however, at present, it is not giving me any trouble. (touch wood.)

I hope you can find a knowledgeable professional to discuss this with. The University of Hawaii was studying it some years back, maybe they can put you onto someone with whom you can have a teleconference.

Good luck with it.

Ann

[caradow]

Hello Alfred,
I have never had ciguatera but have treated patients with it and have a little knowledge. If you read my initial post it gives you some idea of my background.
I have just retired from the US with 30 years experience working in inner city ER's as a physician. I am also boarded in Internal Medicine. Durning that time I have worked in the Cayman Islands, Jamaica and Barbados where I have come in contact with patients with Ciguatera. I am presently in Antigua.
I have seen cases ranging from patients that had to be admitted to the ICU on IV meds to keep their blood pressure up to moderate cases of GI effects such as Diarrhea and tingling. It is a disease of highly variable symptoms and severity. Unfortunately no one can predict what your symptoms will be of how long they will last. And quite honestly not a lot is known about it.
My only advice is not to drink Alcohol of eat any fish that could be the culprit of worsening your symptoms and hopefully they will eventually dissipate. No predictive test are available as to your recovery phase. In all honestly they may be present for the rest of your life. However I have seen patients who have had the disease multiple times without persistent symptoms. Again highly variable symptomatology.
Anyway thats my 2 cents and hopefully someone with more knowledge than I can help you. I certainly am no expert.
I wish you the very best.

[bensolomon]

Al,

Ann messaged me about your issue. I am an ICU physician. I'm happy to help.

It almost sounds to me like you may have inadvertently got into some tetrodotoxin from a puffer fish. Certain Japanese restaurants will prepare blowfish. It is possible that the sushi was contaminated. Also, with the elevated bilirubin and fatigue, I would be concerned that you have an intracellular parasite in your red blood cells causing hemolysis.

In order to determine this, you would have to go back to the lab and obtain a malaria smear. Of course, I don't have the benefit of all of your Labs so I only have one piece of information to go on. If you're interested, send me a private message and I will provide my secure email address (that I use for patient information) for you to send along your medical information and I will look over it.

[Alfred_Buchi]

I am shocked by the responsiveness received here so quickly.

Thank you all for such a warm welcome and for your helpful ideas and thoughts.

Bensolomon - I will message you separately - Thank you so much.

Caradow - Ugh I was hoping I could still have a few beers here and there but it sounds like this may be something I need to really give up for a longer period of time. Thank you.

JPA Cate - Thank you for all of the info. If the shrimp is not normally a trigger, it sure seems like a direct connection for us. Having now gone through a few "relapse events" I'm trying to be more aware of what I'm eating and drinking the day before experiencing issues.

Gordmay - Thank you!


As far as I know this restaurant does not offer puffer fish and when I contacted them asking if any other customers had issues that night or week they of course denied the idea completely that it could have come from their fish, but I am not actively eating other fish and in Southern California, Ciguatera is not seeming like a common concern. I can't tell where they purchased their sushi. Everything they like to advertise is "Japanese barracuda" "Japanese freshwater crab" etc.

Other thoughts had me considering parasites or flukes, or scrombroid poisoning, but the nerological symptoms are what have me leaning more towards Ciguatera. Two stool samples have been negative for parasites but I've heard it's not uncommon for them to be negative unless eggs are present... Still, doesn't' seem to explain some of the symptoms.

I should note that the fatigue was most problematic for maybe 2-3 weeks after consumption but after that I have been active and mountain biking often - sporadic stomach discomfort is not deterring me from living life but it is concerning me and it's not super fun. I did not get a blood test closer to that time when I was most impacted so I don't know if my slightly higher than normal bilirubin numbers from last week are actually lower than they were at that time and I'm on the way back down, or if I'm steady where I'm at... Etc. My blood was perfect 6 months ago at my last physical.

My wife went for a physical yesterday and is getting an ultrasound and blood work done, because she has pain (like when doctors push your sides to check for fatty liver issues) but I have no pain when pushing on the same areas.

[JPA Cate]

Hi, Alfred,

Ann again. Here's a link to a tropical medicine center in Australia. At least 1/3 of Australia is above the tropic of Capricorn. Maybe you can find some ideas in here.

You should be able to get your blood work all faxed through to ben solomon. It might need you being a little bit forceful.

Ann