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Epstein–Barr virus infection induce chronic fatigue syndrome

Discussion in 'Latest ME/CFS Research' started by heapsreal, Aug 31, 2012.

  1. Jacque

    Jacque Senior Member

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    Well you sound like my brother? sister? I am identical to everything you wrote!! My spine is exactly that ...esp my neck...it just burns and burns in occipital area...which some times leads to headaches/migraines... I would literally OFF myself without pain medication...it is the ONLY relief I get and it only lasts about 2 hours... I don't know how you do it... Naltrexone is awesome but I can't take it due to bein on Norco.. Lets stay in touch on how the GcMAF and Rituxan are working for each of us!! Take Care...
     
  2. HTree

    HTree

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    Hi niall , heapsreal
    Thanks for posting about your AV use....
    I'm interested in the Famvir dosing-- Is that a pretty typical schedule? 1/2 250mg 1xday. then up to one full 250mg tablet 1xday ?

    Dr. R suggested I take Imunovir before Famvir , but for various reasons I'm concerned about that/imunomods, so thinking of trying Famvir first. niall, did you take any Avs before ampligen? or will Famvir be your first AV?

    @heaps. please remind me of your Famvir dosing?
    (wondering if it's different for men/women / different size folks)

    Also, are your Famvir pills cut-able? I think i want to start with tinyest dose, then work up, since i feel so hypersensitive to things!

    Thanks for the info friends!
    Peace
    Htree
     
    Jacque likes this.
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I take 250mg twice a day and use 500mg tablet and use a pill cutter to cut them. I have used higher doses but didnt notice any difference doing so. I also think alot has to do with what one can afford when it comes to dosing, size probably plays a factor, im a big guy so i dont know if its an importants factor. I know the half life of antivirals is quite short as in a few hours but i do know famvir has an intracellular half life of 18hrs, this might play a big role and maybe one only needs once a day dosing.

    The question of using famvir or immunovir, i would go by what your doc thinks as she has a great deal of experience with this stuff.

    cheers!!!
     
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Pharmacodynamic properties
    Pharmacotherapeutic group: Oral antiviral agent, ATC code: JO5A B09
    Virology
    Famciclovir is the oral form of the antiviral compound: penciclovir. Famciclovir is rapidly
    converted
    in vivo into penciclovir, which has demonstrable in vitro activity against herpes
    simplex viruses (HSV types 1 and 2) and varicella zoster virus (VZV). The antiviral effect of
    orally administered famciclovir has been demonstrated in several animal models: this effect
    is due to
    in vivo conversion to penciclovir.
    Penciclovir targets virus-infected cells where it is rapidly converted into penciclovirtriphosphate
    (mediated via virus-induced thymidine kinase). The triphosphate inhibits viral
    DNA polymerase by competition with deoxyguanosine triphosphate and is incorporated into
    the extending DNA chain, preventing significant chain elongation. Consequently, viral DNA
    synthesis and, therefore, viral replication are inhibited.
    2
    This triphosphate persists in infected cells in excess of 12 hours. The long intracellular halflife
    of penciclovir triphosphate ensures prolonged antiviral activity, as demonstrated in cell
    cultures with HSV-1 and HSV-2 and in animal studies.
     
  5. August59

    August59 Daughters High School Graduation

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    IMHO Dr. Rey is applying the Ampligen and Famvir in the best way. If she is trying to lower the HHV-6 though I was of the understanding was that Valcyte was the only AV to work against HHV-6. I have not been keeping up with it that much, so i'm sure she has it under control. I do know I wouldn't want to be taking Ampligen at the same time as trying to lower HHV-6. HHV-6 is a nasty virus and bringing it under control is necessary. It loves to hang out in the brain causing havoc especially while CMV and/or EBV are activated.

    I think you should feel very lucky as she sounds as if she has done her homework and knows how to work the medications to get you well. She seems to know to let your body dictate the dosage and when to let the body detox. She will be known for getting good results with the Ampligen and AV as she is reading you and your body , instead of the label on the bottle.

    I'm JEALOUS!! Really hope thing work out good for you.
     
    SOC likes this.
  6. niall

    niall

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    I'm just home from receiving my last dose of Ampligen and am happy that the treadmill which I have been on is over. I have my prescriptions for the Famvir and Doxepin elixir (sleep). I am not going to continue the LDN as I have been taking it for two years and the only benefit it gave was a certain decrease in appetite. I will keep everyone posted on what happens in the future. I am curious to see if my sore throat, muscle pain etc. decreases as I detoxify from Ampligen.
    There was a lady representing Hemispherx at the clinic this morning. I had a chance to talk to her and tell her of my experiences. I emphasized to her that there are so many patients with CFS in need of some FDA approved drug to treat their illness and hoped Ampligen would be approved soon. She said her company is trying very hard to accomplish that and have just submitted the results of studies they have done. I hope that this is of some encouragement to everyone who is so ill and tired of waiting for effective treatment.
     
    Laurissa, HTree, August59 and 2 others like this.
  7. niall

    niall

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    I took Valcyte in 2009 for six months with no improvement. I was on Imunovir before I started Ampligen. I think it helped keep up my NK cells and therefore gave me a bit more energy. The dosing for Famvir does sound low but that is what Dr. Klimas and Dr. Rey are recommending now.
     
  8. Mtb1966

    Mtb1966

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    After many years of permanently swollen lymph nodes in my neck and inflammation of spleen/liver blood tests last year showed
    Ebv vca igm positive
    Ebv na igg strong response
    Ebv dna not detected
    I had glandular fever in 1991. So it seems my immune system is overreactive rather than deficient in its response to EBV like many of you on this thread. The constant overreaction has gradually worn me down and led to chronic fatigue and the need for afternoon naps when not working and generally using all the energy I do have for work. I have been taking advice from a nutritionalist since May last year with a view to balancing my immune system. Had 6 months off july-dec to rest up and see if I could get rid of this. Stop having naps towards the end but all that led to was that my gp classed my condition as Mild so the cfs clinic would not see me. (Unless I go private -lol). Started a new job last month but really struggling.
    I am seeing my immunologist in a weeks time, any advice on whether to ask for antivirals or something that will calm down my immune system. The latter seems more logical but this illness seems to defy all logic! Many on this thread seemed to have tried both so looking for some pointers and feedback as to which you feel helped you more, especially if your immune system is overreactive rather than deficient. Many thanks.
     
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    If you go for something to calm your immune system it would probably be some type of immunosuppressive, maybe not a good idea if you have an active infection.

    My opinion would be to go on an antiviral like famvir. I would also get tested for other herpes viruses like cmv/hhv6 as with these you may need a stronger antiviral like valcyte.

    I would also ask for more immune testing like nk function testing, lymphocyte subset test and immunoglobulin sub classes.

    Also try and test for common bacterial infection because the longer one has cfs generally the more infections. Mycoplasma, chlamydia pneumonia, different lyme bacteria.

    Suggest google the cfs road map which explains testing very well.

    also test different sex hormones and adrenal hormones can be helpful.

    I hope this helps
     
  10. ljimbo423

    ljimbo423 Senior Member

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    @Mtb1966- It is possible that the immune system can be both over-reactive and under-reactive at the same time,(unbalanced). There are two arms of the immune system-th1 and th2. In cfs th2 is often over-reactive, while th1 is under-reactive.

    If you have an over-reactive th2 arm of the immune system, taking something like reishi or astragalus root might help. Reishi and Astragalus help raise the th1 arm of the immune system, thereby lowering the th2 arm. The two arms work like a teeter totter.

    So if one arm is up, the other is usually down. If you decide to take reishi or astragalus, I would go very slow and start with a very low dose to see how you react to it.

    They are helping me a lot, but if I go up to fast on them I get die-off (herxheimer reaction) from the killing off of pathogens. Here are a couple of links that connect a high th2 and a low th1 to cfs. http://www.prohealth.com/library/showarticle.cfm?libid=16823

    Here is the second-http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1808936/
     
    Sancar likes this.
  11. Mtb1966

    Mtb1966

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    Thanks Heapsreal. That gives me plenty to discuss with the immunologist next week. The road map is an excellent document. Basically its fair to say your one post has been more informative and helpful than umpteen visits to doctors over the years!
     
    heapsreal likes this.
  12. Mtb1966

    Mtb1966

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    Thanks Ljimbo that makes a lot if sense. I've been taking advice from a nutritionalist who has been looking to get the immune system working in a more balanced way. I've been taking two herbs, Filessa and Simba for 7-8 months and more less cut out alcohol, dairy, caffeine and sugar. Whilst I wasn't working I probably made some progress but now back to needing naps on nonworking days. I'll look into your suggestions. Best of luck.
     
  13. soofke

    soofke

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    Dutchy
    yes! someone who agrees and with a title no less, if a mere patient says the same then "it's all in the mind" as usual

    and has anyone tried Crotalus, homeopathic (don't laugh) snake venom, by any chance?
     
  14. frederic83

    frederic83 Senior Member

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    Crotalus has shown the promising health benefit for EBV ?
     
  15. soofke

    soofke

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    it has for me @frederic83, this combined with something even more obscure that's supposed to wake bugs from their slumber and then a few months of antibiotics for the Mycoplasma that suddenly popped up would've cured me I think if it wasn't for the metabolism laying on it's ass for too long by then to get up on it's own so that needed a little punch from Armour Thyroid :sleep::alien::bang-head:
     
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  16. frederic83

    frederic83 Senior Member

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    You combined the homeopathic remedy Crotalus venom for EBV and you added something else, maybe another homeopathic remedy, to "reactivate" Mycoplasma ? Is that right?
    You cured the mycoplasma with the antibiotics and Armour, if I understand.
    Did you test again your EBV titers after the crotalus experiment ?
     
    Sancar likes this.
  17. roller

    roller wiggle jiggle

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    i would like to know that too...

    crotalus venom + what please ?
     
  18. soofke

    soofke

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    wow you explain it better than I can Frederic (except for the Armour which fixes a metabolic thing after any bug) and no titers since it was from a alternative practitioner, the only thing that was found by a lab was the Coxsackie B it all started with and the Mycoplasma later on, the EBV I can feel coming and going all on my own; sore throat/lymph nodes, temperature and the spasms in every place where there's lots of nerves will stop/start

    telling that nearly got me kicked from a Dutch forum @roller so I learned to :zippit: and Crotalus should be able to do it all on it's own I think, it'll just take a bit longer, unless there's also toxoplasmosis which viruses can get intertwined with it seems
     
    Last edited: Dec 3, 2016
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  19. frederic83

    frederic83 Senior Member

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    I tried the homeopathic remedy crotalus, I did not really feel well on it, neither my digestive track, it is strange because it is just homeopathy. I bought different dilutions (granules and a liquid form) at an on line pharmacy. It is cheap. It could be worth to experiment it for somebody with a chronic sore throat or swollen glands, which I don't have, cause by an active EBV, as @soofke mentioned it worked for her.
     
  20. soofke

    soofke

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    Dutchy
    yeah but áfter months of abx and the-stuff-that-shall-not-be-mentioned so every other bug was gone and just that pesky EBV remained, also I sorta kinda forgot to mention :oops: that my doc prescribed it with all of this which I don’t need either..

    thanks for trying and the update ;)
     
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