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Non-XMRV subgroups and mercury?

Discussion in 'XMRV Testing, Treatment and Transmission' started by nina_online, Oct 16, 2009.

  1. nina_online

    nina_online

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    This would be speculation, of course, but any thoughts about whether/how mercury toxicity might be associated with a CFS subgroup and whether that subgroup is more or less likely to be XMRV positive? In other words, would mercury toxicity (including "Amalgam Illness") be more likely a differential diagnosis -- if only mainstream doc recognized it -- or could work in synergy with XMRV (e.g. make XMRV infection more likely). I recall in Cutlers book reading that while 75% of people|adults|Americans (? -- cant remember which) have amalgams, 95% of those with chronic diseases have amalgams.

    I ask because I am in the subgroup that, according to Joey's blog, Peterson has given up on. He said it recently enough (i.e. after the XMRV research was completed, though not published) that I suspect we lifelong-fatiguers are less likely to have XMRV.* Joey wrote:
    "Peterson has given up treating non-classic cases of CFS,
    such as people that have had fatigue all their lives. He
    believes they suffer from an organic mitochondrial disease,
    whereas post-infectious fatigue patients have "acquired
    mitochodrial disease," which is secondary to immune dysfunction."

    I realize they found 98% of their PWC sample had antibodies, but didn't they seem to pick from viral-onset cohorts? I am not part of any such cohort. I've had issues since childhood, especially adolescence, but was diagnosed only 2 years ago by Dr. Salvato in Houstin, based on high chronic EBV, low glutathioen and (very) low ATP. (My sister and brother also have been diagnosed on similar basis.)

    *There has been talk on other threads about maybe having been born woth XMVR, but Peterson's position makes me feel that is less likely.

    I so happy about this news, but personally concerned about being left in the CFS (non-XMRV) trashcan. (My best alternative, I believe, is amalgam removal followed by Cutler's protocol.)

    Thanks for any thoughts and discussion.

    Nina
  2. Koan

    Koan Be the change.

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    Hi Nina,

    I think it's just the kind of differences you speak of here that may be exploited by the CDC to dismiss the importance of XMRV. I believe that people who experience life-long fatigue do, as you say, fall into a different subgroup which may or may not have a correlation with XMRV. Just one of the many things we do not know.

    There is something else very interesting about the issue of dental amalgams that has been investigated only recently. It seems that there is a statistically significant correlation between bacteria and dental caries.

    If that's the case, and is part of the larger picture we see in people with CFS - difficulty managing infections of both viral and bacterial nature, perhaps the correlation between amalgam fillings is a result of some people having more caries due to an overgrowth of bacteria and, therefore, more fillings overall.

    Just a thought.

    Tricky stuff.

    Sheesh,

    Koan
  3. SaraM

    SaraM Senior Member

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    Xmrv

    Hi Nina,

    I am almost 100% sure I don't have XMRV. People catch a retrovirus in different ways that none of them apply to me .So, I am in the same boat with you..What kind of test did you do for ATP problem and what is helping you with this part of your CFS?
  4. nina_online

    nina_online

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    Austin, TX
    Sara,

    Dr. Salvato took a blood test and Labcorp analized it:

    Cyclic AMP, Plasma [Labcorp lab code = 004984]
    (Salvato said this is how you measure ATP, should be above 30)

    Here's the complete list of Salvato's testing for CFS (as of Jan 2007) with the Labcorp codes:
    > Cyclic AMP, Plasma [004984]
    > Glutathione [853002]
    > Lyme, Western Blot, Serum [163600]
    > IgG, subclasses 1-4 [209601]
    > EBV acute infection antibodies [216655]
    > Candida IgG,IgM,IgA [823293]
    > Mycoplasma pneumoniae IgG/IgM Antibodies [163758]
    > Cytomegalovirus (CMV) Antibodies, IgM & IgG [828486]
    > HHV-6, IgG Antibodies, Quant 1:40 [161075]

    I had low ATP & glutathione, high EBV and candida (negative for Mycoplasma P, CMV and HHV-6). With that she diagnosed me with CFS (well, as she says, "low ATP and glutathione and high chronic EBV is consistant with what we see in CFS). I have had symptoms for 30 years but previous to Salvato (my sister saw her first and got the diagnosis, and that convinced me to go) I assumed I could not have CFS because I don't have the lymph node / sore throat symptoms. (I am not clear on all the subgroups and various diagnositc criteria. Are tendency toward lymph nodes and sore throat important?)

    Compared to other testing I read about, Salvato's seems pretty basic (I dont know what has changed since Jan 2007.) Interestingly, she also specializes in HIV. I haven;t seen her again as I don't live in Houston.

    Salvato prescribed glutahione and ATP shots. I also added in B12 shots.

    I now follow the Yasko protocol, as modified/abridged by Rich Van Konynenburg for CFS. A major part of it is methylation supplements to help lift a methylation block. Yasko offers a nutrigenomic (genetic) test that, amoung other things, will show some genes that make you susceptible to a methylation cycle block, and Rich also recommends a methylation panel by Vitamin Diagnostics.

    The protocol has helped me and I have learned a tremendous amount of very useful info. Just the GABA/glutamate issue alone is big for me. I know now that glutamate can send me into a serious crisis of sensory overload (like dark-room bedbound) and anxiety. However, it is slow going, and Rich says (paraphrased, probably poorly) that about 2/3 are helped, and that the cause may be that some people's bodies are too overwhelmed with issues such as adrenal and/or thyroid, etc, that need to be addressed separately.

    I am 44 and have had obvious symptoms since age 14 (lesser symptoms earlier), so I also did not pick up a virus via sexual transmission (nor or blood transfusion). My brother and sister were diagnosed in the last couple of years as well, but unlike me, they did not have symptoms (or only minor levels of unrefreshing sleep, delayed sleep phase syndrome) during childhood.

    I keep fretting that I wont have XMRV and will be left with no meaningful diagnosis and no treatment, but then I remember that Mikovitz said they are finding it in autistic kids (to a lesser degree). How would they get it? If they can have it, maybe I can.

    Nina
  5. Cloud

    Cloud Guest

    Nina.....I had all the "Flu-Like" symptoms the first 7-8 years. I felt like I had a severe case of the flu for 8 years....I had sore throat, swollen lymph glands, achy muscles, the works. But when my illness progressed into Neuro symptoms, all the Immune symptoms stopped. I no longer have "Flu-Like" symptoms at all....but, I would take those symptoms back any day over these Neuro symtpoms. Anyhow, I think it's fairly common that as the disease progresses, those Immune Flu-Like symptoms fade away.
  6. SaraM

    SaraM Senior Member

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    Nina,

    I am 43. My mother has CFS and Fibro ,too.Like you I have never had sore throat and lymph node symptoms.Just some ear ache from time to time. I recently started Rich's protocol which seems to be helping me( knock on wood). Glutamate makes me feel much worse (bread exacerbates the pain).I have been tested for some pathogens but they could find none. So far I guess I am one of those people with very good lab results and horrible fatigue and pain.But as you mentioned there are still some tests that must be done in our case.
  7. hope

    hope

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    Hi all

    Maybe we should ask the WPI not to give up on any of us even if some people have to wait for research and treatment.
  8. cigana

    cigana Senior Member

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    Hi Nina,

    It is interesting that your siblings also have been diagnosed and this to me would point to amalgam illness as being an option. Can I ask do your sister and brother both also have amalgam fillings?

    Thanks,

    Cig
  9. bertiedog

    bertiedog Senior Member

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    You will be interested to know that I have had mercury and nickel poisoning (still have too high levels of nickel in my rbc and it shows up as partly blocking my ATP) but I am also XMRV+ so my experience is that we can have both. I have managed to get my mercury levels down into normal by some chelation after getting rid of a large numbers of amalgams. My immune system no longer overreacts to mercury but it still does to nickel.

    Not at all sure what this will mean about chances of getting better.

    Pam
  10. cigana

    cigana Senior Member

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    Hi Pam,

    Have you had ALL of your amalgams removed? Andrew Cutler states in his book that people will never recover if they don't remove all amalgam...

    Best wishes,

    Cig
  11. ukxmrv

    ukxmrv Senior Member

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    I've had several tests for mercury over the years and always been negative. The most recent one was the Kelmer challange.

    XMRV+
  12. garcia

    garcia Aristocrat Extraordinaire

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    Err - vertical transmission? :confused:
  13. bertiedog

    bertiedog Senior Member

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    Hi

    Yes I had all amalgams and the gold crown removed over 10 months during 2001/02 and followed up with chelation using ALA as per Cutler. It took 5 years to get my level to come down to normal but I stopped chelation after about 12 months.

    I guess I was also nickel poisoned at that time but didn't know about it. I have been unable to get this level down. I don't do any chelatiion anymore because it always made me feel very ill with horrendous migraines.

    I have to say that having the amalgams removed didn't make any difference to my health apart from the fact my immune system is stronger, I don't pick up every virus that is going the way I used to.

    Pam

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