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No serological evidence for a role of HHV-6 infection in chronic fatigue syndrome ?!

Discussion in 'Latest ME/CFS Research' started by Omar88, Nov 13, 2012.

  1. PhoenixBurger

    PhoenixBurger Senior Member

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    Tried everything you've suggested plus a million more ideas.

    Yes, I and several others dealing with benign fasciculation syndrome were sick with a flu-like illness prior to onset of symptoms. Do you know which enteroviruses are associated with fasciculations/spasms/twitching? Are there treatments in the form of antivirals?
  2. Hip

    Hip Senior Member

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    Not sure, though the enteroviruses most commonly associated with long-term infection and long-term symptoms are coxsackievirus B and echovirus. These are also the enteroviruses strongly linked to precipitating ME/CFS. Dr John Chia is the world's leading clinical expert on enterovirus-associated ME/CFS, and he uses interferon therapy, ribavirin and oxymatrine as antiviral treatments. Oxymatrine you can buy online as a supplement.

    Some Dr Chia weblinks for you:
    Oxymatrine | Phoenix Rising
    Dr. Chia On Oxymatrine, Autoimmunity, ME/CFS and FM | Phoenix Rising
    Interferon | Phoenix Rising
    NIH State of Knowledge Workshop: Pathogens II (EBV and Enteroviruses) | Phoenix Rising
    An Interview With Dr. John Chia, M.D. Part I by Cort Johnson (8/08) | Phoenix Rising
    An Interview With Dr. John Chia M.D. Enteroviruses and Chronic Fatigue Syndrome Part II: Persistence, Treatment and the Future by Cort Johnson. | Phoenix Rising
    Ribavirin and Interferon- for the Treatment of Patients with Chronic Fatigue Syndrome Associated with Persistent Coxsackievirus B Infection: A Preliminary Observation
    The role of enterovirus in chronic fatigue syndrome
    Chronic fatigue syndrome is associated with chronic enterovirus infection of the stomach
    Acute enterovirus infection followed by myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and viral persistence
  3. PhoenixBurger

    PhoenixBurger Senior Member

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    Thank you. This may sound absurd but I dated a girl several years ago who had polio as a child. She had some pretty bad disability even though she said the virus was long gone from her system. Is it possible that may not be the case, and I acquired something from her?
  4. mellster

    mellster Marco

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    Hi Phoenix, my onset in september 2009 was infectious for weeks then abated, then there was a 18 month period of recurring stomach cramps/gastritis and malabsorption during which twitching developed, first after workouts only, then constantly at least a couple of times per day, then I crashed in spring 2011 and remember sometimes waking up at night because my cheek was twitching. I stopped all exercise for 5 months and went onto heavy supplementation, then resumed slowly. I also got the MAF314 and can vigorously exercise again, but still have very mild occasional inflammation, a reactive lymph node and the twitching is almost completely gone, although it is still more frequent then before I got the infectious onset. I believe BFS is an expression of your immune system at work and there are a lot of papers on it. I think it can stay with you for years but should not become permanent. I should say I am still on the MAF314 and still heavily supplement which is a moving target. The only thing that was proven high in IGG was EBV, so I believe it may have been onset and/or reactivation and chronic. Hope this helps, all the best.
  5. Hip

    Hip Senior Member

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    My view is that each person we kiss and/or have sex with, no matter how healthy they are, we probably pick up at least one chronic pathogen from them (and they probably pick up one or more bugs from us) if the relationship goes on for a while. The pathogen(s) transmitted could be viral, bacterial, fungal, protozoal, or a helminth.

    It is only now, in hindsight, with my ME/CFS precipitated by a nasty chronic sore throat virus I picked up, that I have become very aware of the link between catching pathogens and these pathogens precipitating chronic diseases.

    I remember when I started going out with one girl (this was 20 years ago). Within the first two weeks of our relationship (which was sexual from day one), I suddenly started getting overactive bladder (a disease involving an uncontrollable desire to urinate). I never had any problems like that at all. Indeed, prior to that I had an excellent and very strong bladder. I could not figure out, at that time, why this overactive bladder condition had very suddenly happened to me. In retrospect, I think I must have picked up some pathogen from that girl, a pathogen that may have entered via my urinary tract, and then caused overactive bladder. Even today, I still have overactive bladder, even after all these years. Overactive bladder is a condition that may predispose you to getting fibromyalgia (it certainly is a common comorbid condition of fibromyalgia).

    Then, some years later, from my next girlfriend, I suddenly had all the lymph nodes in my groin become swollen, weeks after commencing a monogamous sexual relationship with her. I think this was caused by me acquiring some pathogen in the groin area that caused lymph node inflammation. Sexual health tests at the time (and again later) found no sexually transmitted pathogens. But of course there are many other pathogens apart from the classic sexually transmitted ones. Antibiotics never helped. These groin lymph nodes are still swollen today.

    In another relationship I had (which only involved kissing the girl), I suddenly developed IBS. Prior to that, my bowels and digestion were excellent. But almost overnight, I got IBS, within a month of that relationship starting. IBS has been linked to protozoal parasites such as Blastocystis hominis, and I think I may have picked up something like that from her.

    Finally, the coup de grâce of my ill-health: I went on an evening date, only involving some kissing. On that fateful evening, I picked up a horrible sore throat through kissing (the sore throat appeared by the next day) — a vicious throat infection that would never go away. This sore throat virus rapidly spread to my stomach, intestines, lungs, sinuses, etc, and ended up precipitating ME/CFS, plus other ill-health conditions in me.

    I have not had that many relationships in my life, but nearly all the ones I have had involved some completely new ill health condition starting very soon after the relationship commenced. And all the ill health conditions I have had started via relationships.

    So that my story of the pathogens we can pick up from our amorous relationships. I should add that I am a romantic person, and I don't want to portray the seeking of a relationship sound like a medical risk. But I think picking up new pathogens this way does happen, even if we are not aware of it.
  6. Valentijn

    Valentijn Activity Level: 3

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    Magnesium has been a great help for me too, regarding spasms, twitching, and muscle cramps. And keeping my bowels moving :p

    Not all forms of magnesium are as effective, so maybe a different type would be helpful?
  7. mellster

    mellster Marco

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    Hip - I agree that it is likely common bacteria, parasites and viruses not linked to common STDs that get frequently exchanged during sexual encounters that can start episodes of chronic illness. One more reason though to believe that there is either an underlying genetic predisposition and/or a sleuth of life stressors reigning in all at once, or (less likely IMO) a stealth pathogen making the patients more susceptible than the rest of the population.
  8. PhoenixBurger

    PhoenixBurger Senior Member

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    Valentijn what type have you used? Magnesium tended to make me feel less good, versus better.
  9. Valentijn

    Valentijn Activity Level: 3

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    Magnesium Citrate is supposed to be a good form, and works well for me. I use Jarrow's Magnesium Optimizer (Citrate), which also has a small amount of potassium citrate. Taking 2 per day seems to get rid of most of the twitching/spasms/cramps, though all bets are off when crashing.

    Magnesium oxide is the cheap stuff, and will just give you diarrhea (or get things moving if taken when constipated). Chelated magnesium is supposed to be good, but just gave me diarrhea too.
  10. AFCFS

    AFCFS Senior Member

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    Magnesium orotate has been great for me. For me, it does not provide the more immediate bowel clearing of magnesium citrate and brings quite a bit of calm/relaxation in short order.
  11. alex3619

    alex3619 Senior Member

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    This are the key arguments that I am thinking about at the moment. Latent enteroviral infections ... latent is a poor word. It turns out enteroviruses have three lifecycles, and only one of those shows up in serological testing (probably). The other two are tissue based lifecycles, and do not induce viremia and only rarely induce cell lysis. Data from Lerner suggests the same thing might happen with herpes viruses ... which could explain a lot. Without blatant viremia it is less likely that antibodies will be made, so antibody data is suspect. What Lerner recently showed though is we have unique herpes antibodies. We have antibodies to the inside of these viruses, not the capsid. This fits the alternate lifecycle hypotheses.

    The big question for me though is whether this represents opportunistic infections, where weaknesses in our immunity mean that alternate viral lifecycles cannot be removed, or whether it is causal.

    Bye, Alex
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  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I think when it comes to the herpes viruses and probably other viruses the terms reactivate and replicate get mixed up. replicate is when more virus are being made where reactivate the viruses are just doing their job of making us feel like crap. This is also why one can still feel crappy on antivirals as antivirals just stop replication, not reactivation and is why one has to be on avs for a long time as we have to wait for the viruses to die out or for viral load to be low enough that the immune system can take care of it.

    So i think the so called latent virus is still reactivating(maybe at a lower level) but just not replicating, if that makes sense??
    alex3619 likes this.
  13. Butydoc

    Butydoc

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    I believe reactivation of a virus does imply that it has gone from a latent phase to a replicating phase. I also believe what makes us feel sick is the immune response to the virus. I asked the same question to Dr. Montoya and was given this answer.

    Gary
  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I could be wrong but my thinking is that reactivation is that the virus is no longer dormant and is then living off the host, us. I suppose the virus has to be reactivating to replicate but i think the two are still seperate. I make this assumption as antivirals stop viruses from replicating but the active virus is whats making us feel unwell and also like u mentiuon the immune response makes us feel unwell through inflammatory cytokines etc etc

    On antivirals we still 'crash' but the severity of the crashes are reduced. I feel that the crashes still occurr because of viruses reactivating but the severity is lessening due to the replication being interrupted by antivirals and viral load reduces???? Also lerner i think has mentioned that parts(lytic)of the viruses can still cause immune responses making us feel unwell. I suppose antivirals can still affect these part of viruses??

    Hopefully there are more scientists working on this then just us having a guess. As mentioned earlier about the different life cycles of viruses, once they work it out maybe they can then treat the viruses at the different life cycles it has and possibly irradicate the viruses all together, i hope.
  15. AFCFS

    AFCFS Senior Member

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    I will need to ask my doc this, but am interested in knowing how others may have had LabCorp HHV6 interpreted with the HHV 6 IgG Antibodies with a HIGH index score, where the ranges are identified as:

    Negative < 0.76
    Equivocal 0.76 - 0.99
    Positive > 0.99
    And
    HHV 6 IgM is Negative:
    Negative < 1:10

    I know this has been tossed around before, and have read this (http://www.hhv-6foundation.org/patients/patient-faq):
    and this (http://www.hhv-6foundation.org/patients/hhv-6-testing-for-patients):
    ***************************************************************************************************************
    As mentioned, mine was done by LabCorp, so not sure if that means another test is needed if HHV 6 IgG Antibodies with a HIGH index score.....
  16. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Trying to not sound like a broken record but another test to help verify active infection is a lymphocyte subset test where cd t cells are measured, cd8 t cells are commonly high in active herpes infections.
    http://www.sydpath.stvincents.com.au/tests/ImmunoFrames/lymphocytosis.htm
    unsure if cd8 t cells high in hhv6 but they are high in ebv and cmv so one would think also high in hhv6??
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  17. AFCFS

    AFCFS Senior Member

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    Thanks, sometimes if we hear the record enough it may sink in :).

    I did have the % CD8-/CD57+ Lymphs and Abs. CD8-CD57+ which were both relatively low in the reference interval (think this is in line with what was being referenced. Lacking the CMV and the EBV in any signifcant results, just thinking that also with chlamydia pneumoniae igg high, mycoplasma pneumoniae igg abs high, hhv 6 igg antibodies high and the assoiated IgM values negative, if it start to looks more like the body is just hammering away at something that is not there anymore but sees as a threat or if there is another interpretation.

    Had two docs suggest, without knowing any lab results, that a run of antibiotics would likely not hurt anything but may help, or at the very least give a better clinical picture.
  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    if u have myco and cpn then a few weeks of doxy could be diagnostic for you, although 2 things can say its working, 1 u will feel like crap as u having a die off reaction and 2 u will feel better. Treating these could be enough to take the load off your immune system and allow it to go after the viral stuff like hhv6??
    AFCFS likes this.
  19. alex3619

    alex3619 Senior Member

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    One of the reasons I don't like talking of latent vs. reactivating any more is that this is all within the framework of a viral lytic lifecycle. What about the minimally lytic and non-lytic lifecycles? Viruses can be active in those, and reactivate, without inducing viremia and therefore showing normal in serological testing. Only a biopsy has a chance of seeing what is really going on. So far this is only strongly supported for enteroviruses so far as I am aware, but the a lot of findings by Lerner fit with this.

    So it is entirely possible to have a reactivated virus that shows no viremia. What it does mean though is the virus is again affecting cellular chemistry.

    So far as I am aware all of this research is still inside virology. I do not know if there would be many doctors who are aware of it. I hope to investigate this more in the coming months.
    GaryK, merylg and heapsreal like this.
  20. GaryK

    GaryK

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    Alex I am very interested in this line of thinking it really starts to make sense. If you could point me in the right direction for lerners info on herp viruses I would be greatful...thank you
    Gary K

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