Next month it'll be a year that I've had ciguatera. Luckily the intensity of my symptoms has subsided, but the toxin is still quite present and active.
I have nerve pain all over my body every day. It comes in sharp pricks for a second or two in random spots; also spasms, tingling, itchiness, etc. Frustrating. I tried to phase back in some of the foods to avoid without success. I don't know what I accidently had last week but I'm having a rough flare-up with the nerve pain. It's getting colder, so I hope the cold is not what exacerbating it because if so it's going to be a long winter.
Fingers crossed, my gastrointestinal pain/discomfort has been a LOT better after on/off problems until October. I truly hope this holds because that's been the hardest symptom to manage.
I finally got a colonoscopy/endoscopy which came back normal- a relief after so many months of scary GI pain and feelings. But NOT a fun process at all.
Aerobic exercise seems to help a lot. Thank heavens, because the research says it makes it worse for some people. I've taken up salsa dancing a few nights a week and when I go for an hour or two dancing hard- sweaty head to toe- I feel no pain at all and often the next day is smoother than usual.
I am concerned about getting H1N1, because we have no idea if/how it might react with ciguatera. I'd like to get the vaccine as soon as I can. I got the seasonal and pneumonia vaccines already. I got a bad cold and it hit hard; I lost weight and it lasted for 2 1/2 weeks. I think it's possible that my immune system is affected by this, but who knows.
I'd love to hear from others- similar experiences? what's different?
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I too have been up against this unknown. It started after eating shrimp, I had a horrible reaction that was treated as an allergy and symptoms have been ongoing. I was determined NOT to be allergic to shrimp by the allergist and that I have a toxic reaction in my body. Most of my labwork comes back normal. They do not know what to say. I had a SMALL bite of chcolate last night and it seemd to bring it all back alll over again. Most MDs are not sure what I have ans there is no known cure. I am weak, have episodes of tachycardia, diarrhea, I have tinglinig/prickling of scalp, hands, mouth. I then have violent shaking of my legs. Temperature hot and cold. I keep waiting for my body to rid the toxin, this has been 18 days now. I will have a few stable days with intermittent symptoms and then have terrible flare. I also have had headache and dizzy vision with the flares. Sometimes I have fine red rash all over my body. The day after the flares leave me unable to do anything but sip broth. I have been dehydrated, although I am drinking many liters of water daily. No one quite believes the severity of the onset. I was always such a healthy individual. I am so sad to not have any beer, wine or chocolate, nuts etc. I am also avoiding mushrooms and anything with preservatives as it seems to cause increased skin symptoms. I am at a loss.
ReplyDeleteAnon- I am sorry to hear you are suffering from this also. I have had every symptom you describe. I had the red rash mostly on my hands but that stopped after a few months. I hope that you will have a quick recovery. I've now had it for almost a year, but the symptoms aren't nearly as bad as they were at first, so hopefully the intensity will subside for you too. The tachycardia and diarrhea are pretty rare for me now; mostly I get tired and have nerve pain every day to greater and lesser degrees. Sometimes the nerve pain is minimal, but this week it's flaring up a lot. None of it is bad enough that I am taking medication it, but It is frustrating... there is so little we can do except manage the process. And you are right, the doctors have no idea what to do. I totally agree with you on being sad to avoid the foods. It's better than having some awful invasive treatment, but hard just the same. Traveling and eating out are harder- seeds and nut oils are in so many foods. It's also awkward to explain or avoid explaining to others. What I wouldn't do for a cup of coffee in the morning-- even decaf causes a problem. I still can't have a tiny piece of chocolate without triggering it to flare up for a few days. The only alchohol I've found that doesn't cause a reaction is gin and tonics. Where are you located? I'm in Seattle. I have a good article from a world expert I can send to you if you like, send an email address and I won't publish that comment-Ruby
ReplyDeleteAnon- one thing I've found helps with the constant, constant dehydration is buying little Propel packets to mix in water bottles when I feel unbalanced. They sell them at Safeway and one packet works for a few bottles- it's cheap and easy. It's a simple low-sugar electrolyte mix similar to the ones sold all over in tropical countries for heat management.
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