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Re: Ciguatera Poison Updates

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In a message dated 11/23/02 5:15:33 PM Pacific Standard Time,

marypmichel@... writes:

> See chronicneurotoxins.com on the internet. You can also get ahold of

> Dr. Shoemaker's book " Desperation Medicine "

>

>

Thank you very much , I will do that right now. I went ahead real quick

and did a quick search on " ciguatera poisoning " and I most of the symptoms I

read about don't even match our symptoms..meaning people with CFS, fibro,

etc. The main symptoms was you think things are hot that are really cold and

visa versa..I never hear anyone complain about that. In this same breath as

I say this I MUST mention that I got sick with this illness right after

getting food poisoning from sea food at a resturant so you never know. Any

opinions on this? thank you,

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I came across info about two kinds of treatment: cholestyramine and intravenous

mannitol.

One article about cholestyramine (an FDA-approved cholesterol-lowering

prescription drug) also mentioned a simple visual acuity test to diagnose

chronic ciguatera poisoning. Wonder where we could

get this test? The cholestyramine was given for up to 12 weeks, though the

symptoms had lasted for 10 years in some patients. See

http://www.astmh.org/ciguatera.html

Mannitol treatment is described at http://www.rehablink.com/ciguatera/treat.htm

but this is for acute poisoning. I wonder whether mannitol could be taken

orally? It is a sugar derived either from seaweed or from mannose. Mannose is a

sugar available OTC for

prevention/treatment of urinary tract infections; it is supposed to work by

stopping e. coli from adhering to the urinary tract tissues.

A few interesting tidbits from the mannitol article:

" Ciguatoxin belongs to a newly described class of toxins that act on sodium

channels and cause changes in the electrical potential and permeability of

cells. This may explain many of the clinical

manifestations of the disease. Although ciguatoxin is the predominant toxin in

ciguatera fish poisoning, other compounds have been associated with the disease;

this may account for the variability

in the clinical presentation. "

" The mechanism of action of mannitol is obscure, but two attractive

possibilities are that

competitive inhibition occurs at the cell membrane or that one or more of the

involved toxins is rendered inert. " ... " Mannitol is both inexpensive and safe.

None of our patients required more than

250 mL of 20% mannitol given intravenously; the rate of infusion in all cases

was 1 g/kg given over 30 minutes in a piggyback manner. "

Roxy

gettinghealthyto@... wrote:

> I am sorry if this has been asked and answered already but I was wondering if

> anyone knew what the treatment is for Ciguatera poisoning? K

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Try http://www.chronicneurotoxins.com

++PLS

Re: Ciguatera Poison Updates

I came across info about two kinds of treatment: cholestyramine and

intravenous mannitol.

One article about cholestyramine (an FDA-approved cholesterol-lowering

prescription drug) also mentioned a simple visual acuity test to diagnose

chronic ciguatera poisoning. Wonder where we could

get this test? The cholestyramine was given for up to 12 weeks, though the

symptoms had lasted for 10 years in some patients. See

http://www.astmh.org/ciguatera.html

Mannitol treatment is described at

http://www.rehablink.com/ciguatera/treat.htm

but this is for acute poisoning. I wonder whether mannitol could be taken

orally? It is a sugar derived either from seaweed or from mannose. Mannose

is a sugar available OTC for

prevention/treatment of urinary tract infections; it is supposed to work by

stopping e. coli from adhering to the urinary tract tissues.

A few interesting tidbits from the mannitol article:

" Ciguatoxin belongs to a newly described class of toxins that act on sodium

channels and cause changes in the electrical potential and permeability of

cells. This may explain many of the clinical

manifestations of the disease. Although ciguatoxin is the predominant toxin

in ciguatera fish poisoning, other compounds have been associated with the

disease; this may account for the variability

in the clinical presentation. "

" The mechanism of action of mannitol is obscure, but two attractive

possibilities are that

competitive inhibition occurs at the cell membrane or that one or more of

the involved toxins is rendered inert. " ... " Mannitol is both inexpensive

and safe. None of our patients required more than

250 mL of 20% mannitol given intravenously; the rate of infusion in all

cases was 1 g/kg given over 30 minutes in a piggyback manner. "

Roxy

gettinghealthyto@... wrote:

> I am sorry if this has been asked and answered already but I was wondering

if

> anyone knew what the treatment is for Ciguatera poisoning? K

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

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Thanks, . I signed on and will take the test. May I ask your results, and

whether you have gotten treatment that helped?

Roxy

Michel wrote:

> Roxy,

>

> You can take this visual aquity test online for less than $10.00 on

chronicneurotoxins.com, Dr. Shoemakers site.

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Roxy,

Thanks for posting this. So Dr. Shoemaker has already made progress

on ciguatera! I thought he would know something about it, and it

appears that he delivered a paper about it two years ago! And

cholestyramine does work for chronic ciguatoxicity, according to

him. The visual contrast test he mentions is available for about

$9.00 on his website (www.chronicneurotoxins.com). You have to

register first (upper left), and then it will direct you to the

test. Don't worry about the more expensive kit for doctors that is

mentioned there. It's a separate thing, and you won't get charged

for it unless you specifically ask for it.

Mannitol is not absorbed from the G.I. tract, except in the case of

leaky gut syndrome. In fact, it is used in the test for leaky gut.

Rich

>

> > I am sorry if this has been asked and answered already but I was

wondering if

> > anyone knew what the treatment is for Ciguatera poisoning? K

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,

Is the Actos he uses the drug for diabetes?

So far I have not been able to get the Shoemaker test to work -- maybe I need a

newer browser.

Thanks.

Roxy

> In @y..., Michel <marypmichel@y...> wrote:

> [snipped] Dr. Shoemaker

> uses a proven protocol of Cholestyramine and Actos [snipped]

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Did anyone else notice the articles mentioning of the feeding of fish

meal to live stock (specifically pigs and chickens)?

It speculated that this could be a " sub-clinical " source for

ciguatera, esp. for those that were pre-exposed and thus weakened.

Interesting. Lots of people everywhere eat chicken and pork (fish

meal is fed to cattle too, if I am not mistaken, thought the article

did not mention this practice specifically).

Too, CFSers are " pre-exposed " and weakened " neurologically, are we

not?

Hmmmmm....maybe this not so far fetched after all?

Zippy

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I took the manual card test from which the machine, or perhaps this is the

machine, I'm not exactly sure what the machine is. But anyway, Dr. Hudnell,

the neurotoxicologist from the EPA who is responsible for the test revisions

from its original form, administered the test to me personally. I tested

positive in one eye. Then a week or so later I took the online test, and

scored positive in the same eye. Dr. Hudnell is responsible for the

revisions made to the online test, although the EPA is not too happy about

that.

Donna in NC

Re: Ciguatera Poison Updates

Has anyone done the test online and then using the machine. If so were the

results the same?

Regards

Dave x

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Hey ,

When Dr. Hudnell tested me as positive, we decided to test my husband too,

as out house has had so many mold problems. While he does have mold

allergies now, he tested negative on the VCS. He's only brain fogged when he

wants to pretend he didn't hear what I was saying.....so I guess the test is

probably pretty good.

Donna in NC

Ciguatera Poison Updates

In a message dated 11/24/02 5:02:42 PM Eastern Standard Time,

writes:

> One article about cholestyramine (an FDA-approved cholesterol-lowering

> prescription drug) also mentioned a simple visual acuity test to diagnose

> chronic ciguatera poisoning.

Maybe this was an indirect reference to Dr. Shoemakers VCS? I am glad I

took

his test. It only costs $8 and I came up negative and so I'd assume he's

done a good job on filtering out too many false positives b/c if there is

anyone having lots of brain fog it is me, although I'm sure others on this

list have much more than even me. Tonight I was delivering pizzas like I

always do 6 nights a week, I walked up to the customers door with the two

liter of Pepsi but no pizza bag and she came to the door and I was like " Oh "

and went back to my car to grab the bag--it was pretty funny actually. If

my

brain fog was caused by neurotoxins then that would have been great to find

this out but with a negative on the VCS test I'd say that is one less thing

I

have to worry about, although it is not 100% that I am negative but

hopefully

I am.

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