Why dealing with Ciguatera is hard (aside from the obvious)

Of course, dealing with neurological and gastrointestinal pain is hard, plus the myriad of other bizarre and unpleasant symptoms. What I think makes it even tougher is that you are so isolated. There are no support groups; but it's beyond that. Because there's no definitive test, there is no proof you have it, so people might not even believe you, including doctors. They might think it's caused by psychiatric reasons- when in fact ciguatera can cause that as well. Also, there is so little research on it or information that it's hard to feel any sense of control about what your prognosis may be. Or how it interacts with activities and substances out there. For example- can it exacerbate pain during dental work? What are the chances it could ruin a pregnancy? Are there any medicines you shouldn't take? (eg I took Immodium, which probably caused it to absorb more fully- big mistake). Is it worse under certain conditions? (eg I had a terrible reaction at altitude).

Treatment is another frustrating aspect of ciguatera. Thankfully, there are no invasive or toxic treatments. But being able to do NOTHING for the most part is hard; other than painkillers and adhering to the special diet, there is little you can do to help yourself heal. And little help yourself feel a sense of control over the situation. I read that Vitamin B12 active form may help regrow nerve cells faster, so I've been trying that but it certainly hasn't cured me yet.

And because there is no way to know for sure that's what you have, it's scary. It is always possible that you have some awful underlying condition instead, like MS or cancer. Or that it can develop into long-term disability referenced vaguely in some journal articles. The international community isn't concerned about it whatsoever compared to some diseases that get mentioned in travel clinics and guides. There is a small community of experts, but very little in the way of action. Researchers in North Carolina and Australia are working on a possible antidote, but it is many years away from human-ready.

Slowing down is another challenge. I just can't do as much as I used to, and if I commit to some activity I might not be able to come through on it. Traveling is hard, because of the diet. Leaving the country is not possible, as I need to be able to trust and read food labels.

What are your frustrations in dealing with ciguatera? Comments welcome.