JUNE 2015
 
*Name: Connie

Have you been affected by Ciguatera Poisoning?: Yes, someone I know has had ciguatera poisoning
How did you hear about us?: Search Engine


Tell us your story: My 48 year old sister became sick with Ciguatera Poisoning after eating grouper this past Friday (Ocean City, MD). She is still in the hospital as the doctors are trying to get her BP to a normal range off meds. I have been reading a lot about Ciguatera and I am so afraid for what is in store for her. Your website seems to be a good source of support. I will pass this along to her once she is out of the hospital. I did read about someone that went on cholesterol meds (Cholestyramine)…any updates on the success of that?
 
Connie:

So sorry to her your sister got sick with Ciguatera. I don’t know of anything that actually does work to relieve symptoms only stories I’ve seen online of different meds that relieved some of the symptoms for some people. I tried “Gabapentin” a few weeks after getting sick after reading that it helped a few people in a study but it only made my symptoms worse. From every doctor and specialist I’ve talked to since I got sick in 2012 they’ve all said unfortunately the only cure is time, most cases only last a week to 10 days so hopefully she has a mild case.
One of the first people on the blog said they were going to try Cholestyramine but I never did hear back from them if it helped, I’ll reach out to them and ask, that was back in 2013. Please keep me posted and let me know if that drug does help her.
Sincerely,
Jeff
HI,
Thanks for responding. Just wondering…how are you today? Do you still have to watch what you eat?
My overall health is good and the only symptoms I still have is reversal of hot and cold in my hands, its not as severe as it was in the beginning only an annoyance and a reminder that this toxin is still in me. I do eat Mahi Mahi, Tuna & Swordfish and haven’t had any real symptoms to speak of, every now and then I wake up the next day with sweaty feet but it goes away, very strange!
I haven’t had Grouper, Hogfish or Red Snapper since I got sick, I have concern if I do eat reef fish again the symptoms could come back, I never want to go through this again so don’t think I’ll ever eat that kind of fish..
Hope she gets better soon!
Sincerely,
Jeff
One last question….I read your blog….did you stay away from those trigger foods (nuts, chicken, caffeine….) those first few months? Once my sister is up to it can she get in touch with you? (ok so 2 questions!)
I did stay away from all those foods mentioned & alcohol for months until I felt better. I went to a party about 30 days after and tried a beer and it was a mistake, definitely felt the symptoms increase. I think every person reacts differently so hard to tell if they would affect her but probably better to stay away.

She can call or email me anytime.
Jeff