lyme, mycoplasma, cigua toxin

Discussion in 'Fibromyalgia Main Forum' started by scubadiver, Apr 12, 2003.

  1. scubadiver

    scubadiver New Member

    Hi Everyone !
    I have been in contact with seven people including
    myself who have been dealing with DD for many years. We have been given diagnoses of CFIDS/FIBRO. This prompted many of us to do more specific testing for Mycoplasma and
    Lyme and get treatment. 3 were positive for Lyme on Western Blots and 4 were positive for mycoplasma via PCR. Many years of antibiotic treatment therapy have not cured us.
    Some got a little better, some worse.
    When the free testing was available for the cigua toxin, all
    of us decided to send our blood to Hokama. Now, all seven of us are positive for Cigua toxin. I am wondering if anyone
    else on this message board has tested positive for cigua
    and a pathogen. We don't know what to make of this yet but
    the stats that I have collected seem interesting. Any thoughts???????






    [This Message was Edited on 04/12/2003]
  2. fuzzy14

    fuzzy14 New Member

    Go to msn search DR.SHOEMAKER
    2ND ART. Dr. Ritchie Shoemaker
    he treats with QUESTRAN which is a cholesterol lowing R/x an milk of magnesia Suppose to have good results.
    [This Message was Edited on 04/12/2003]
  3. scubadiver

    scubadiver New Member

    Dear Fuzzy14,
    We've looked into this and some of us have already tried
    Questran with very poor results.
    It's our understanding the scientist Dr. Hokama
    and his pathology staff have reviewed this approach/therapy and gave it the thumbs down due to not enough scientific
    evidence. Perhaps, questran might be able to remove a little bit of this sort of toxin out of bile but it probably has no effect once it is in the central nervous system or organs like the liver.
    We are waiting for the researchers to figure out the
    chemistry of this toxin and find out what's causing this
    process. We don't know why so many of us with chronic
    illness labeled as CFIDS/Fibro are testing positive.

    [This Message was Edited on 04/13/2003]
  4. layinglow

    layinglow New Member

    Scuba I did alot of research on Cigua Toxin, a few months ago. I was astounded that it not only has an acute phase but also, has well documented chronic aspects also. The symptoms in the chronic phase astounded me, with their parallels to these disorders. I read as many of Dr. Hokama's papers as I could get my hands on. Your group with all 7 positive, is interesting, and warrants further investigation. Perhaps Dr. Hokama could be convinced to undertake a large study group of 100-200 who have been diagnosed with these disorders and see how many positive results were obtained.
    LL
  5. scubadiver

    scubadiver New Member

    Dear Betsy,
    Please look at (Edited to Remove URL).
    What you have to understand is that this is NOT ACUTE
    cigua toxin poisoning. It's some sort of cigua LIKE lipid
    toxin that are detecting. Intitially, the scientist Dr.
    Hokama reluctantly tested samples from people who
    have CFIDS/FIBRO or the DD. But after his first few samples
    he couldn't believe why they were positive and asked for more samples, even offered testing for free. Now, they
    have brought in more experts to breakdown the chemistry
    of it and the next step would be to figure out what is
    causing it. Could it be some infectious agent? Maybe? The NCF organization is a non-profit organization and comes
    out with a quarterly newletter. You should make contact
    with them and ask them to send you a complimentary issue.
    The next issue will discuss more info that we've been
    waiting for. Please test and keep us posted.
  6. scubadiver

    scubadiver New Member

    Dear Layinglow,
    The last I heard, Dr. Hokama has already tested over a
    couple hundred samples of people that have
    been diagnosed with chronic illness such as CFIDS/FIBRO
    and he's showing a 96% positive rate. When we heard the
    testing was available for free a lot of us jumped onto it.
    His laboratory was very busy that now they have to charge
    a small fee for the testing. From what I understand Dr.
    Hokama is the CDC's expert in cigua poisoning. He didn't
    think that CFIDS/FIBRO people could be coming up positive on
    his test and when they did he asked for more samples to test.
    Most of us have spent our lives testing and using up valuable funds just to try to find out what the heck
    is wrong with us and why treatment for the infections
    hasn't completely turned us around or made us worse.
    I know there are many underlying issues and each person
    is different but this cigua like thing seems significant
    especically since the group that I have been in contact
    with are all positive.




    [This Message was Edited on 04/13/2003]
  7. scubadiver

    scubadiver New Member

    bumped this up
  8. layinglow

    layinglow New Member

    Is there an explanation, that you have come across as another possible source of the cigua Toxin in patients, besides the dinoflagellites working their way up the food chain to higher order saltwater fish such as barracuda, shark, etc, and consequent ingestion by humans?

    Have you found anyone testing for other neurotoxins in these disorders such as Brevotoxins common to shellfish, and that ingestion of this may also cause a chronic condition?

    LL
  9. scubadiver

    scubadiver New Member

    Hi Layinglow,
    I don't know how to answer your questions as I am still
    researching... but here's some info and if you
    go to the http://www.ncf-net.org site there's more updated
    information about this.
    A couple of my fiends who tested positive say they never
    ate seafood because they couldn't stand the fishy smell

    The Ciguatera Epitope: So What Do We Really Know Thus Far?
    by Alan Cocchetto Copyright © 2003

    Let me start with the following: What do we really know at this time
    about the ciguatera
    epitope? Well, we do know that CFS patients test abnormal by three
    different scientific methods
    which include (A) Dr. Yoshitsugi Hokama's monoclonal antibody based
    ciguatera test
    (University of Hawaii Medical School); (B) Food and Drug Administration's
    (FDA)
    neuroblastoma test; (C) Competitive assay using the synthetic fragment of
    ciguatera.
    These together greatly assist in the identification of the toxin's
    structure, amount, and its
    unique characterization. In the Journal of Clinical Laboratory Analysis
    publication, available
    from our website on the Medical Breakthrough page or to our members by
    mail (see materials
    section in this issue), it was reported that 96% of CFS patients were
    identified as having
    abnormal amounts of ciguatera toxin! Furthermore, with this study, it
    certainly looks as though
    we are a rather cohesive bunch in terms of this test and that is great!

    Next, many have wondered what an epitope is? An epitope is a fragment
    of an antigen capable
    of specific antibody binding. The implications thus far are that the CFS
    serum lipids do resemble
    ciguatera in every test done to date. I am reminded of the old adage, if
    it looks like a duck and
    quacks like a duck, then it just might be a duck!

    But where to next? Well, the NCF has funded a research project aimed
    at identification and
    characterization of the CFS lipid that is reacting with the monoclonal
    antibody, "Purification and
    Biological Characteristics of the "Chronic Phase Lipid" in CFS, CCFP, and
    Other Diseases." This
    should prove to be very interesting and exciting work since therapeutic
    implications may be the
    direct result of this research effort!

    Next, has CFS really been associated with ciguatera poisoning?
    Well, see the references
    at the end of this article for consideration. However, one article
    eloquently points this out.
    From "CFS Following a Toxic Exposure" by Racciatti (2001), scientists
    examined many
    different subgroups of CFS and included ciguatera poisoning as a toxic
    cause of CFS. They
    found that these toxic patients had T-cell counts (CD4 - helper cells and
    CD8 -
    suppressor/cytotoxic cells) that were lower than those CFS patients who
    were considered
    post-viral CFS patients. Likewise toxic patients had much lower natural
    killer cell counts than
    post-viral patients and these toxic patients had much higher CD4/CD8 cell
    ratios than the
    post-viral patients as well.

    Quoting Racciatti's study "patients with a history of toxic exposure
    in fact showed a more
    severe dysfunction of the immune system in a statistically significant
    way" and so the
    "preliminary findings confirm the presence of a dysfunction of the immune
    system in CFS
    patients with a history of toxic exposure." Thus "CFS patients with a
    post-toxic exposure onset
    might represent a well defined CFS subgroup characterized by a specific
    immune dysfunction
    probably precipitated by the toxic exposure itself." I would have to say
    that this is certainly
    is agreement with numerous previous findings and medical observations.
    The NCF's ciguatera
    research discovery may aid in solidifying this hypothesis since 96%
    probably represents such
    a well defined CFS subgroup! Last of all, let me mention one other
    article for the naysayers out
    there. It is an article by Barton (1995) that also connects ciguatera
    poisoning to the development
    of CFS! But most of all, I can truly appreciate the article's contents
    from its title which is
    "Ciguatera Fish Poisoning: A Southern California Epidemic." Maybe it's
    time for the NCF's
    efforts to be taken seriously!!!!! (For a more detailed report, read
    "Current Summary of the
    NCF's Funded Research" in this issue.)

    References:
    Ting J, Brown A
    Ciguatera poisoning: A global issue with common management problems
    Eur J Emerg Med Dec; 8(4): 295-300, 2001

    Racciatti D, Vecchiet J, Ceccomancini A, Ricci F, Pizzigallo E
    Chronic Fatigue Syndrome following a toxic exposure
    Sci Total Environ Apr 10; 270(1-3): 27-31, 2001

    Chaudhuri A, Watson WS, Pearn J, Behan PO
    The symptoms of Chronic Fatigue Syndrome are related to abnormal ion
    channel function
    Med Hypotheses Jan; 54(1):59-63 , 2000

    Chaudhuri A, Behan PO
    Neurological Dysfunction in Chronic Fatigue Syndrome
    Journal of Chronic Fatigue Syndrome 6(3-4): 51-68, 2000

    Pearn J
    Differential Diagnosis: The Challenge of Chronic Fatigue
    Journal of Chronic Fatigue Syndrome 7(4): 17-31, 2000

    Racciatti D, Barbeno A, Veechiet J, Pizzigallo E
    Clinical and Pathogenetical Characterization of 238 Patients of a Chronic
    Fatigue Syndrome Italian Center
    Journal of Chronic Fatigue Syndrome 5(3-4), 1999

    Barton ED et al.
    Ciguatera Fish Poisoning: A Southern California Epidemic
    Western J Med 163(1): 31-34, 1995

    Pearn J
    Ciguatera - A potent cause of the Chronic Fatigue Syndrome
    EOS J Immunol Immunopathol XV 1/2: 63-65, 1995

    Gillespie NC, Lewis RJ, Pearn JH et al.
    Ciguatera in Australia. Occurrence, clinical features, pathophysiology and
    management
    Med J Aust 145: 584-590, 1986
    [Ed. Note: We have heard from dozens and dozens of our members who have
    taken advantage of
    the testing. All, thus far, have been positive.]

    The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 * (781)
    449-3535 Fax (781) 449-8606

  10. scubadiver

    scubadiver New Member

    Layinglow,
    Do you get the NCF quarterly forum? Because the winter edition explains this is not due to any food poisoning. The titres of CFS patients is so much higher so that the researchers created a "CFS profile" for their testing.

    I believe Dr. Hokama knows about Brevetoxin. But I think
    his main focus is on the cigua, possible far worse?
    Anyhow, the researchers are calling what we have is a
    cigua LIKE lipid toxin and for some reason our blood
    samples are coming up positive. By the way, not everyone
    will test positive either. My husband tested negative
    but then again he doesn't have the DD.

    That's the best I can explain. I know other doctor's have their own theories but Dr. Hokama and his team will hopefully be able figure out what it is and what's causing it and with more funding find a treatment plan.
  11. AmyKaiser

    AmyKaiser New Member

    hi i did a search for Ciga toxin and saw your post..
    thats a great article..
    i have NCFs newsletter too..
    did you notice JAY GOLDSTEIN is their medical advisor...
    very cool..

    anyways i cant find a doctor to draw the blood and send it...
    plus it is $100.00 and am doubting ins covers it..

    i am just so freaked out today...
    i have been showing symptoms of MS for sometime..
    i tried to assume it was due to CFS and low blood sugar...
    sure the low blood sugar seems a key issue and all but there are times, often there are, that i feel i am going to convulse.
    it scares me so to not have control of my own brain...its so inconsistant too
    times i am so weird and slow i communicate with doctors and nurses like an uncool geek who has no social skills...
    then an hour later i am a motor mouth..etc etc.
    but i just signed on because of my anxiety over MS symptoms where i felt i was going to convulse..as if the nuerons arent registering...my motor coordination is so bad i bump into things.......
    i hoped maybe the Cig. toxin might be to blame...
    this someday, as Gail president of NCF told me, will be reversible...
    MS is not...

    boy toxins sure make more and more sense to CFS as it affects all organs really...
    i felt so much ease when Gail told me about it..that finally my rush and constant pressure to find the original source that subsequently affects all other parts of my body was finally over..

    blah blah blah...i cant get anything done these last few days and maybe ill head a post of my MS neaurological fears as well...
    over and out,
    Amy
  12. Mikie

    Mikie Moderator

    It is against the rules to post URL's. You can give the name of the website or what to do a web search on, but you may not give the URL's.

    Posting them really increases Shirl's and my workload as we must go through the posts and remove them. It does a disservice to our members as then they must figure out how to get the info.

    We appreciate your cooperation.

    Love, Mikie
  13. AmyKaiser

    AmyKaiser New Member

    you have me confused Mikie, did i post a web site?
    i am aware its against the boards policy
  14. shiloah

    shiloah New Member

    I have been to this board before but it has been a while and since I have lyme disease I felt kinda ......out there..ya know like i didn't belong because i didnt have fibro...but have the same feelings as everyone here...PAIN!!!! So i guess i do belong...anyways , i always would read these symptoms of everyone and i thougth these are all MY symptoms ..i worried that the people that had and were diagnosed with fibro..actually had lyme because you can test negative for lyme and still have it ..if you do not get the right test or the right lab it can be negative but also a person can be negative but actually positive...did you understand that? I didn't lol...I have alot of neurological problems besides the pain so please bear with me ...i have a list full of symptoms...But i am just concerned for all of you and worried that you could have Lyme Disease and get even worse...so i just thought i would just add in what Scuba had just wrote also....Also there is a DR.C in Mo. and i lost his address and # a really nice lady from PA (i think) gave me his and an LLMD from PA and i lost everything because my PC crashed ...can anyone help me? I know EVERYONE knows about DR.C....thankyou so much ...