MS mimic - ciguatera

Question

Hi all

I am seeking to make contact with anyone who has experienced ciguatera toxic poisoning or can point me in the direction of any medical experts. In particular I am keen to make contact with anyone who has experienced persistant and long term neurological symptoms or who recovered from the initial poisoning, however has redeveloped symptoms in the future and suffered from relapses. 

Thanks in advance

minadog · Answer

I am not advising anyone, this is simply what I did for myself. Decide for yourself the risk benefits:

The best ciguatera web site:

http://www.fmdrl.org/index.cfm?event=c.getAttachment&riid=3569



Ciguatera
If Doctors in your area are too inept to help, then this is the research I did for myself, and what I used to treat my symptoms:

Mannitol is what is Prescribed by some doctors, if you can't convince your doctor to give you the injection, as was in my case, then consider options that deliver similar affects:

What Mannitol achieves:

http://www.drugs.com/pro/mannitol-injection.html

Excretion of toxicants:

http://www.eoearth.org/view/article/152706/

High protien diet results in acidic urine helping to eliminate some toxins, so I bought this product, and taking it twice daily as per directions:

http://m.gnc.com/product/index.jsp?productId=350995




I ordered this product:


EDTA (Calcium Disodium EDTA) is a chelating agent designed to bind and render inactive certain trace metals. This product is intended to supplement intravenous chelation therapy of plaque and other mineral deposits throughout the cardiovascular system. Since EDTA may deplete levels of important vitamins and minerals, supplementing your diet with a daily multi-vitamin* is recommended. INGREDIENTS: EDTA (Calcium Disodium) 800 mg. DIRECTIONS: 1 capsule two times per day on an empty stomach or as directed by psyhician.
See link to purchase product:


http://www.amazon.com/gp/aw/d/B008DKQREC/ref=redir_mdp_mobile?psc=1&redirect=true&ref_=oh_details_o00_s00_i00




I have been periodically taking four pills a day:

http://www.amazon.com/gp/aw/d/B003G6VEB4/ref=redir_mdp_mobile?psc=1&redirect=true&ref_=oh_details_o01_s00_i00


This stuff is excellent! You can get it at Whole Foods:

http://m.vitacost.com/natures-answer-liquid-vitamin-b-complex-natural-tangerine-16-fl-oz

Supposed to increase blood flow. I bought it:

http://www.amazon.com/gp/aw/d/B001A1VI86?cache=45786f23e382ec82297864ee5a0012bd&pi=AC_SX110_SY165_QL70#ref=mp_s_a_1_5


http://www.amazon.com/gp/aw/d/B003AXWOOY/ref=ox_sc_act_image_1?ie=UTF8&m=A1NWHVG6ZRL80

http://vitamins.ultimatefatburner.com/hawthorne-berry.html

http://www.amazon.com/gp/aw/d/B000F1CV5G?cache=45786f23e382ec82297864ee5a0012bd&pi=AC_SX110_SY165_QL70#ref=mp_s_a_1_9

High in rosemarinic acid, can buy at Whole Foods, this is not related to blood flow:

http://www.biotta.ch/en/products/biotta-classic/elderberry/

http://www.amazon.com/gp/aw/d/B000OL64CI/ref=redir_mdp_mobile?psc=1&redirect=true&ref_=oh_details_o04_s00_i01

finleygirl123 · Answer

My husband and I were diagnosed with Ciguatera in 2004 after consuming blue nosed seabass from New Zealand at a restaurant in San Mateo, California.  We were at a loss as to what was happening to us, gastrointestinal symptoms which morphed into a series of neurological parasthesias, sheer exhaustion, etc., all exacerbated with the consumption of the known triggers, caffeine, alcohol, nuts, etc.  Both of us were unable to work for some time.  Eventually, out of desperation, we ended up at the Stanford ER where a wonderful infectious disease specialist happened to be on call.  His suspicion was Ciguatera, and sent us to a very good internist who quarterbacked a series of appointments and tests to rule out other possible causes, which, we were told was the only way to go about diagnosing what was going on with us.  In the meantime, with research of our own, we found that the University of Hawaii
had done a lot of research for Ciguatera.  They were offering an assay blood test, which, supposedly would tell us if our blood contained the toxin.  We sent our blood to the university, and it came back positive.  We also spoke with a Dr. Yoshitsugi Hokama who was quite helpful in advising us as to things we should avoid to prevent the recurrence of symptoms.  We were very careful to avoid the irritant foods, took a regimen of vitamins, added an SSRI for some of the neuropathy, titrated exercise to try to avoid the ensuing "crash" This was the most confounding and scary medical event of our lives.  It probably took a year to resolve the most imminent symptoms, and I can say today that we are completely over it, though there are times I wonder if my lack of concentration and increased difficulty dealing with stress might be related or are just a symptom of aging.  I am 61. Needless to say, we avoid fish today.  While the toxin originates in tropical waters, these fish are exported all over the world.  Fish meal could contain ciguatera, and this is fed to farmed fish.  There needs to be better awareness, testing and regulatory guidelines to protect the public from this little publicized neurotoxin.  Good luck to everyone, and take heart that the symptoms do, in most cases, resolve over time.

mbulato · Answer

Is there anyone out there who was diagnosed with ciguatera poisoning and had an MRI done that shows a lesion? I am desperate to make contact with someone who might have more information and know of an expert on this subject. My sister is in the hospital for a second time in 5 weeks with debilitating symptoms. Her doctors have ruled out ciguatera though she suspects this might be the cause--as her symptoms are very much aligned with those reported by other people effected by the toxin. Any guidance or names/emails of specialist is welcome!!!!

Ciguatera · Answer

I have Chronic ciguatera 
I got ciguatera in 1994 - Ciguatera is a neurotoxin the effects the CNS. I an seeing a neurologist and am currently on Cymbalta 60 for nerve pain. Ciguatera is a sodium Ion Channel antagonist. It also more than one toxin and can cause over 175 different symptoms.

Keep researching because due to red tide more attention is being given to Ciguatera treatment and cure.

brusha · Answer

Hi all and thanks for your replies. 

Ciguatera is very complex, as are many neurological conditions. Although I have built up a wealth of knowledge throughout my journey, there is also so much I dont know.....and similarily so much doctors and experts dont know...... hence my original post. 

Ciguatera is considered an MS mimic. It is very difficult to diagnosis, but can be best diagnosed if you seek treatment as soon as symptoms appear. Relapses can be triggered through consumption of fish (any fish), nuts, alcohol, caffeine amoungst other things, and can reappear months or years later .....certainly worth considering if you are a limbo lander. 

I will try gather some easy to read info on this to post a link to if anyone is interested in reading.

ShadowsSister · Answer

I hope you'll give us all an education about this condition. Ess is one of our "Flower Ladies", they do a great Job....
 We have several people in our group who live "Down Under", they might fine your information very useful, one more reason for you to stick around...  ;-)
take care, I look forward to getting to know you...{{{~!~}}}

essdipity · Answer

Hi again. I had never heard of ciguatera, not that that means anything, except that it's kind of rare in these parts.

A quick look-up told me that it is carried only by certain fish in tropical reefs. Avoiding fish from these areas is the only way to be sure of avoiding the poison. I'm sure that commercially they are outlawed virtually everywhere because of their danger, but naturally anyone can go fishing and eat the catch. Australia, where you're from, seems to have a rather high incidence of ciguatera, not surprising given it's geography/

I repeat all of this not because I think you don't know it, as I'm sure you do. It's for the benefit of others here. Have you been diagnosed with this poisoning? If so, what treatment are you getting? I would think that Australian medical experts would be highly knowledgeable on this subject.

I see that ciguatera can cause ongoing symptoms very similar to those in MS, and so qualifies as another MS mimic. I don't know what tests there are for it, but they aren't performed here in the US.

Good luck in getting the info you need.

ess