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Frequently Asked Questions (FAQ) January 23, 2003 (Updated April 2005) To answer (and restate, in some cases) often asked questions about the new research on ciguatera toxin, we hope this clarification will be helpful. 1. Is this a fish toxin? Ciguatera is a fish toxin but until all research is complete, we don't know if this is the exact same entity as ciguatera toxin. We do know that all tests for ciguatera toxin come up positive in those with CFS that we've heard from thus far and are far higher than those seen in acute ciguatera poisoning. 2. Is testing available? Yes. The lab has reopened at a new location. Click here for information on submitting a sample. 3. How much does testing cost? Testing formerly was free of charge as the National CFIDS Foundation was paying for the testing. The test now costs $100.00, and patients will be sent an invoice. Please make checks out to: "Account #1977 RCUH" The prescribing physician will receive the results. 4. What treatment does the NCF recommend? There is currently no known, proven treatment for this. Cholestyramine, mentioned by many, will not help. We hope to be able to have a proven treatment sometime this year, but in order to do no harm to the patient, more proven science is necessary first. 5. Where can I read more about this work? In the winter 2003 edition of The National Forum. Some of these articles have since become available on-line in the Forum archives and our online library. If non-members want to join and receive the Winter 2003 back issue, they can do so online or by sending a membership check ($30 annual membership with a percentage going to research) and $7 for every back issue to the NCF at the address listed on our Contact page. Only three or four articles are put online from each issue out of approximately 20-40 articles. Click here to read the current on-line Forum articles. 6. When can we expect publication of the science? They were published in 2003, follow the links below. Journal of Toxicology: Toxins Review (2003) paper titled "Chronic phase lipids in sera of several chronic diseases reacting with MAb-CTX (antibody to ciguatoxin)" by Y. Hokama et. al. "Chronic phase lipids in sera of chronic fatigue syndrome (CFS), chronic ciguatera fish poisoning (CCFP), hepatitis B, and cancer with antigenic epitope resembling ciguatoxin, as assessed with MAb-CTX." Journal: J Clin Lab Anal. 2003;17(4):132-9. Authors: Hokama Y, Uto GA, Palafox NA, Enlander D, Jordan E, Cocchetto A. |
