JUNE 2015

 

*Name: Beth

 

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 was on a sailing trip in the Bahamas and I had Grouper at a restaurant on our 2nd last night. The next day I had diarrhea – just one episode, and after just had upset tummy. The next day I flew back to Canada and started having tingling in feet and hands then after a little snooze my lips went numb and I got very dizzy and light headed. We thought I may be suffering from the skin bends from diving.. due to the tingling. After I got home I visited my local hyperbaric chamber and they felt I should have treatment. After treatment that did not elleviate my symptoms the Dr. questioned Ciguatera Fish poisoning. Since then I have seen an internal medicine Dr. and they also think I have the toxin. I have been concerned about MS, however, Dr’s do not think that is what is happening. I have all the symptoms and they start to subside then come back -just as strong. My main concern is fatigue, muscle pain and I had the first occurence of some depression. I have stopped all consumption of alcohol, fish, cafeine and nuts as recommended. I also getting acupuncture. It has been over 3 weeks now and still dealing with it. I am surprised considering I was not super sick at the start. Thanks for writing the blog, I will review it more. Crazy there is no real treatment for this. I am a very active person always on a bike,hiking, skiing and my boyfriend owns a winery so my lifestyle has really been affected !

 

Beth:

So sorry to here you got ciguatera, hopefully your symptoms will subside soon. Its so frustrating that nothing can be done, hang in there, you will get better!! Please let me know what island in the Bahamas you were on when you ate the fish?
Thanks,
Jeff
I was in Nassau – Providence Island
Right now I am taking rosmarinic acid, detox herbs from my Chinese medicine.  I have a friend who is checking with toxicologists and they suggested as follows:

 I agree that it seems far out to try mannitol.  With chronic symptoms people discuss using amitriptyline.  Gabapentin was used in a case that was the New England Journal. Another option that mechanistically make sense to me but for which there is no data would be topiramate.

 

I’ve seen some things that symptoms can last a year.  Alcohol is known to make some people worse.”

 

I want to try the Mannitol IV regardless, I do not think it can hurt.  Have you tried any of the above drugs?

 

Beth

 

 

They wouldn’t give us Mannitol because they said they didn’t think it worked, poison control says to try that in the first 48 hours, still mad I didn’t insist on them giving us the mannitol so I’ll never know. I tried Gabapentin but felt even worse so I stopped after 48 hours, nothing ever helped us but time. I did notice that alcohol enhanced the symptoms the first time I tried it a few months after getting sick so I stopped. It took me about 4 months before I really felt normal again however my daughter got better within 30 days, my wife and daughter’s boyfriend got better within days, they ate a very small amount.

Please let me know if any of those items help you and hope you get better soon, feel free to call me if you would like to talk..
Jeff
The Dr would not give me mannitol today – she said the only way they prescribe that is if my brain was swelling up.   I asked about the other drugs they say will possibly help with the symptoms so she prescribed amitriptlyline -it is an antidepresent but it has some success for the fatigue and paresthesia…  I am not sure I want to take it yet.  I think I will ride it out for a while.  I am leaving for holiday to Spain next week and I am hoping that another week will help.  My whole vacation is around wine tasting and food… even have a place booked at a winery for my anniversary with my boyfriend.
Have you heard of any success with amitrptlyline?  I am seeing another Dr next week,but I do not expect any different news.  I think I have come to except I need to ride it out.
I am going to try to have a glass of wine soon to see what happens- thanks for setting up the blog site- this is such a frustrating condition but it could be worse !
Cheers

Beth

 
 
 
 
Jeff – I have been reading people’s blogs and I read Myriam June 2014  ate fish at the same restaurant I did – the Poop deck in Nassau !

So almost a year later – I am another person who got CFP.  I am going to see if I can send them an email..

You have my permission to post my emails to you on how I got CFP.

I  have not been avoiding grains.. maybe I will do that.  I still have symptoms but never had the hot cold thing… I am just dizzy a lot, very tired and sore weak muscles..I had a short period of depression last weekend.  I am taking natural herbs- rosmarinc acid and just started taking a expensive antioxident called reserve.

I may try Amitryptyline- I read it may help with the fatigue and itchy tingling… have you heard if it helps anyone?

I keep hoping I wake up and feel better – or in another 7 days as I will be in Spain !

Thanks for your support to the rest of us !

Beth