My Ciguatera toxin results,free testing and possible for future confirmation of CFS?!

[*GG*]

My response from researchers:

Lipid Titer

Undiluted, 1:5, 1:10, 1:20, 1:40, 1:80, 1:160, Control
......2+.......+.......+.....+......+/-.....-.........-............-

__ X_ Results resemble CFS profile _ __ Results resemble normal profile

1+ or + = positive result; +/- = borderline result; - = negative result; w=weak

**Note: The last +/- result is considered the endpoint titer. Positive or borderline titers that are equal to or
greater than 1:40 resemble a CFS lipid profile.


Explanation of the CFS Profile Test:

This laboratory test is a modified immunoassay that is capable of detecting lipophilic
substances that are likely structurally similar to the marine neurotoxin ciguatoxin in
serological samples. A positive test result (positive or borderline titers at or above 1:40)
indicates that the patient has an elevated acetone-soluble lipid component when
compared to normal samples that is indicative of chronic fatigue syndrome. :Retro mad:

Studies are currently underway to determine the causative component(s).

Full text articles of previous studies further explaining the scientific methods and test
interpretation can be found at the National CFIDS Foundation website resources library
located at:

http://www.ncf-net.org/library.htm.

(ggingues - I lined up your + and - values so we could see what your results were.
It looks like +/- borderline @ 1:40. Kim)

 

[_Kim_]

Thanks for posting your results.

I'm unclear what your results actually were, though. I see that you resemble CFS profile, but what were the actual titers?

I sent my blood in for this test just a few days ago. How long did it take before you got your results?

 

[*GG*]

For a limited time, the John A. Burns School of Medicine (University of
Hawaii) is offering free testing to any patient who is interested and fits the
following criteria:

-The patient must be clinically diagnosed with chronic fatigue
syndrome
-The patient must be willing to fill out a short questionnaire about
their health history as it relates to CFS
-The patient will be sent their MIA/ciguatera testing/CFS lipid
profile test results but should be aware that any results from other uses of
their serum will not be individually reported to them although their
identities will remain anonymous and only be used for scientific purposes.

The test for ciguatera toxin poisoning is only offered, at this time,
through the medical school. It has been found to be a biomarker for autoimmune
diseases that includes CFS via replicated research.

Those who want to be tested (or retested) for this current work at no cost
for the test may e-mail the researchers at cfs.testing@yahoo.com
(mailto: cfs.testing@yahoo.com ) for instructions.

For better health,

Gail Kansky
President, National CFIDS Foundation, Inc.
103 Aletha Rd.
Needham, MA 02492-3931

 

[*GG*]

Thanks for posting your results.

I'm unclear what your results actually were, though. I see that you resemble CFS profile, but what were the actual titers?

I sent my blood in for this test just a few days ago. How long did it take before you got your results?

I am not really certain either, but just glad for what seems like some postivie confirmation for what I have been suffering for only 7 years now, ever since coming down with Mono. The results were recieved in less than 2 weeks! I had my blood drawn on 2/3/10.

 

[Nina]

The test for ciguatera toxin poisoning is only offered, at this time,
through the medical school. It has been found to be a biomarker for autoimmune
diseases that includes CFS via replicated research.

This is the first time I hear about this. If this is a replicated proven biomarker for CFS, how come this has not yet raised much public attention?

Or is it just me who doesn't know? (Wouldn't be the first time!)

 

[Dr. Yes]

Thanks from me, too, for posting, ggingues. I have been trying to get blood drawn for this test as well.

I am not really certain either, but just glad for what seems like some postivie confirmation for what I have been suffering for only 7 years now, ever since coming down with Mono.

Do you mean they didn't provide any better explanation than the one you posted? I was hoping (based on their emailed info) that they would do a better job interpreting the results for patients. Are you planning to call them and request a more thorough explanation from one of the doctors?

@Nina: as far as I know no other groups have tried to replicate this group's particular findings. It does not yet qualify as an established biomarker for that reason, but it shows promise if their percentages hold up. Basically they have found high amounts of a lipid in the sera of CFS patients (Fukuda-defined, I think) that is structurally similar, but not identical, to ciguatoxin (which causes a kind of fish poisoning). They also found it to a lesser extent in cancer, hepatitis, and true ciguatera poisoning cases. As I understand it this lipid seems to interfere both with ion channels in nerve cells and possibly with mitochondria. Their guess is that is produced in the liver, as part of a response to disease or injury.

 

[_Kim_]

My results came back today - 6 days after my blood was drawn. As you can see, my lipid titer was positive @ 1:80

 

[oerganix]

Thanks for posting this. What does the blood sample require? I'm not in the States, so I'm curious whether I could get this test done.

 

[Kati]

I have tried e-mailing them for info but they haven't answered. :-(

 

[Advocate]

Does anyone know if they've looked for this in healthy people? If so, how does it compare?

 

[Hysterical Woman]

Hi Kim,

So what's next if you get a positive result?

Hysterical

 

[_Kim_]

Thanks for posting this. What does the blood sample require? I'm not in the States, so I'm curious whether I could get this test done.

Here's the Blood Sample Protocol: View attachment Ciguatera Protocol for Blood Sample.pdf

I have tried e-mailing them for info but they haven't answered. :-(

Here's the email I got. Maybe the limited time offer is over??
You could try calling Cara E. Campora, PhD University of Hawaii 808-956-7178

Thanks for getting in touch about the CFS lipid profile/ciguatera testing. For a limited time we are offering the test free of charge in exchange for a) completion of a short questionnaire requesting background information on your health, mostly as it relates to your CFS diagnosis and b) the understanding that we may use your serum for additional tests related to the pursuit of understanding CFS. Your CFS lipid profile/ciguatera test results will be emailed or faxed to your doctor, however, any and all other testing will be blinded and anonymized and as such it will not be reported to you or your doctor.

​

Does anyone know if they've looked for this in healthy people? If so, how does it compare?

There was a study published in 2003.

Thirty-seven samples from normal subjects showed titers less than 1:10 (89%), while four samples had titers of 1:40 and 1:80, representing 11.0% of the samples examined. In contrast, of the 100 CFS samples, 95.6% had titers of 1:40160, while five samples had 1:20 titers and less, representing 4.4% of the samples examined.

Hi Kim,

So what's next if you get a positive result?

Hysterical

That's what I'm wondering. I plan to do read up on treatments for true ciguatera poisoning. At present, no treatment recommendations have been made. Of course, I'll talk with my doctor and see what she suggests.

 

[richvank]

Hi, all.

As I understand it, the test Dr. Hokama has developed for ciguatoxin is an antibody-type test. Any other molecule that has a part (epitope) that matches the antibody that is used in the ciguatoxin test will give a positive result.

The test was originally developed to test fish to see if they contained ciguatoxin, which comes from sea life eating an organism in tropical reefs called a dinoflagellate. This toxin is concentrated up the food chain, and does not
harm the fish, so the larger fish at the top of the tropical food chain can contain enough to be toxic to humans.

It was discovered that people with CFS tend to be positive on this test, even though they have not consumed tropical fish.

Dr. Hokama's group found that this antibody test also gives a positive response if molecules related to the phospholipid called cardiolipin is present in the blood sample. This phospholipid is normally used almost exclusively to construct the membranes around mitochondria in humans and in animals. It got its name because it was first found in the hearts of animals, which are very rich in mitochondria, because of the high need of heart muscle for ATP to power muscle contractions. ATP is produced by the mitochondria.
Having elevated levels of cardiolipin or fragments of it in the blood suggests that there has been damage to the mitochondria.

In CFS, there is lots of evidence of mitochondrial dysfunction, and there is also some published evidence of structural damage to mitochondria in CFS. In addition, Dr. John McLaren Howard, now of Acumen Lab in the UK, has analyzed mitochondria from a large number of PWCs (people with CFS), and there is clear evidence of mito dysfunction as well as membrane damage.

This makes a lot of sense in terms of the biochemistry, because PWCs are in a state of oxidative stress. The largest source of reactive oxygen species in the body are the mitochondria. We have evidence that glutathione, the basis of the body's antioxidant enzyme system, is depleted in PWCs. The most vulnerable molecules to oxidative stress are the unsaturated fatty acids that make up the cellular membranes, including the mitochondrial membranes.

So all of this appears to fit together rather well. The positive results on the ciguatoxin epitope test in PWCs is evidence for damage to their mitochondria, originating from glutathione depletion. This forms the basis for the Glutathione Depletion--Methylation Cycle Block hypothesis for the etiology, pathogenesis, and pathophysiology of CFS. This hypothesis provides a basis for explaining essentially all the observed features of CFS, and treatment based on it has been shown to be significantly helpful to at least two-thirds of PWCs who have tried it. Work continues to try to understand the lack of response from the other one-third of PWCs, and progress is being made on this.

This treatment has been taking a long time to bring recovery, and it appears that other treatments are needed in addition to deal specifically with some of the aspects of CFS that either were initial causes, such as mold toxin exposure or Lyme disease, or which accumulated over time as a result of dysfunction of the immune system and the detox system, which are consequences of glutathione depletion and the partial methylation cycle block. We don't yet know how the XMRV retrovirus fits into the picture. Is it a first cause in some of the cases, or is it something that comes into the picture later because of the immune dysfunction? We don't know yet, and hopefully the ongoing research on this will settle this issue soon.

With regard to whether the ciguatoxin epitope test will provide a good biomarker for CFS, while it is positive in at least many cases of CFS, it looks as though it will not be specific to CFS, because there are other disorders that involve mitochondrial damage. Some have already been found, as noted in an earlier post to this thread. Parkinson's and Alzheimer's diseases are a couple more that seem likely to give positive responses on this test, but I don't know if they have been studied yet.

I do think that this is an interesting development, and it does provide additional evidence for mito involvement in CFS. It's interesting to note that Dr. Ritchie Shoemaker has worked on treating biotoxin illness, and some of the biotoxins he has treated come from dinoflagellates, such as Pfiesteria and the one that makes ciguatoxin.

Best regards,

Rich

 

[Abraxas]

Thanks for posting this. What does the blood sample require? I'm not in the States, so I'm curious whether I could get this test done.

I emailed them the other day and got a reply. They received an overwhelming response, so they are not offering the free test any longer. If you still want the test it costs $100.

 

[*GG*]

I have tried e-mailing them for info but they haven't answered. :-(

I believe they toke a little while to respond probably about 1 week or so, do not recall exactly.

 

[*GG*]

Thanks from me, too, for posting, ggingues. I have been trying to get blood drawn for this test as well.



Do you mean they didn't provide any better explanation than the one you posted? I was hoping (based on their emailed info) that they would do a better job interpreting the results for patients. Are you planning to call them and request a more thorough explanation from one of the doctors?

What you see is what I was given as a response. I should follow up on this, but have not at this point.

 

[julius]

I got this response,

"Thank you for your inquiry. We received an overwhelming response in recent weeks, and as such we will not be offering the free test any longer. If you would still like to be tested at the laboratory rate of $100, you may follow the instructions at www.ncf-net.org --> research --> ciguatera testing protocol link. Thanks again for your interest,

808-956-7178"

 

[golden]

Does anyone know is this test available in the UK at present?

Many Thanks