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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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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. niall

    niall

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    Being able to work full time is very encouraging, presumably yours is a sedentary occupation. Are you able to do any exercise? A bit of bike riding, perhaps?
     
  2. vli

    vli

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    I don't think what heapsreal does sounds very sedentary, at all! If you don't mind me saying so heaps, I've always felt how well you do on the AVs/famvir alone makes me feel like you may be a lot less sick than many of us to start off with...
     
  3. niall

    niall

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    Hi Vli, I just checked my pre-Ampligen HHV6 IgG and it was the same as yours at 1:160, it was unchanged after six months on Ampligen and I don't expect it to be much different by the end of this treatment.
     
  4. vli

    vli

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    niall, thanks so much. Just so I understand better:

    Can anyone explain to me (because i'm dense) whether the aim is to see that number go DOWN after treatment rather than go UP? I read someone here (heapsreal???) say that the Ab (among other) tests is pretty useless since our immune systems can be too weak to even produce antibodies to the virus, so this is a paradox. If our AB IGG goes UP Enlander and Montoya wld be more willing to treat w/ valcyte BUT if it goes up it's actually an indicator that our immune systems are getting stronger????? Thus, our doctors are actually more willing to treat it when we're stronger and producing more antibodies than when we're weaker?!?!?

    vli
     
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I think it will really come down to your docs opinion. Ihave read several accounts of people being treated for these infections and viral titres can go all over the place . Hopefully someone who gets them measured regulaly can add more to this. It just doesnt seem black and white.

    cheers!!
     
  6. vli

    vli

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    heapsreal, thanks so much :)

    If you don't mind my asking what's your PERSONAL opinion on whether the AB IGG should go up or go down? Just logically. If you were too weak to produce antibodies to the virus to start off with and the immune modulator is now strengthening your immune system to make more antibodies than before, is it reasonable to think it should go UP?

    P.S. I haven't consulted w/ Dr E further on this b/c he's of the opinion that the blood tests should be taken as gospel, that if the IGM is in range you don't have a current infection. Since this is his line of thinking I can't try to ask him about the IGG since he considers it irrelevant :(
     
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    My work isnt really sedentry but i dont dig holes for a living. I work as a paramedic, shifts i work are long. After about day 2 my brain can go off but with my job adrenaline can kick in when needed and i seem to be able to get my job done but saying that im knackered atthe end of each day. Im lucky that i dont have to work night shifts anymore just day and afternoon shifts. On work days i dont do any sort of activities out side of work. Days off i have tried doing some light exercise but this only seems to last a few weeks and then my function decreases. So at this stage exercise is out, mainly i just veg/rest around the house and post on here on days off, every so often when i get a bee in my bonnet i will do some cleaning but basically im resting for work and time my sick days for when i know i will be buggered.

    Im functioning better then most with cfs but still being around work mates or dont have cfs, I notice theyare way more functional then myself ie able to do gym work before and after work,going out etc and just are very active social life. For some of them their social life is just as active as their work life, which seems to be somewhat normal. WHoever i work with always says what did you get up to on your days off, i just say not much just veging. I dont mention i was supine on the lounge for 3 days. Every few months work ask me about my high sick leave and they say is there anyway we can help you, i just say no, im just buggered. They dont know anything about my cfs as many yearsago when i first had cfs and asked my bosses for part time work because i felt 'tired' all the time, they just tried to run me out of the job. So it ended up being a stressful fight to work part time and i was struggling with that, famvir/antivirals have helped me to improve where i can go to work and not get my house repossessed and support my wife and kids, thats my motivation to keep going looking for treatments etc

    cheers!!!
     
    taniaaust1 likes this.
  8. SOC

    SOC Senior Member

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    You're probably confused because the whole antibody titre thing is confused. ;) This link might help
    http://www.hhv-6foundation.org/patients/hhv-6-testing-for-patients

    Antibody titres are not a great measure for what we want to know. IgG can remain elevated for many years after infection, so most doctors dismiss a high IgG as a previous infection even though you may actually have a chronic infection.

    On the other hand, if your immune system is doing a lousy job of producing antibodies, then your antibody titres could be low even though you have an active infection.

    So, what happens to antibody titres when you take Valcyte? Well, if you weren't originally producing antibodies, your titres could go up as your immune system recovers. Or, your antibody titres could stay the same since in many people, once the IgG is high, it stays high for decades. Or, your antibody titres could go down. So as you can see, it's not a simple issue and good analysis requires consideration of symptom changes. These tests were not really designed for evaluating the efficacy of antiviral treatment because changes in IgG titres are not consistent from one person to another, especially if there's immune dysfunction involved.

    Not only that, they've now decided HHV-6a and HHV-6b are two different viruses, so who knows if the tests are equally good for both. :rolleyes:
     
    vli likes this.
  9. vli

    vli

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    OK SOC, that really clears some things up and I am really grateful for ur response. Thank you!!! :S
     
    SOC likes this.
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Vli here in australia its hard to get viral titres measured for some stupid reason but the lymphocyte sub set test i get which measure cd8 t cells which is an indicator of ebv/cmv infections(unsure if same for hhv6), the t cells were elevated in me and took 6 months of antivirals before they started to come down, my last test a few months ago showed that they were only just in the high range. so i use this test of the immune system to see how its handling these viruses. I dont know how accurate this is but it does seem to correlate alot with my symptoms.

    cheers!!!
     
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Just searching to try and find out how long cd8 cells remain high for in ebv, i came along this which i thought was interesting. it shows that malaria infection can make ebv reactivate, so it seems anything that stresses the immune system can cause ebv to got nuts again?? I have only read the into.
    http://jid.oxfordjournals.org/content/199/1/31.full.pdf
    Background.
    To investigate how intense Plasmodium falciparum infection predisposes to Epstein-Barr virus

    (EBV)–positive Burkitt lymphoma (BL), we analyzed the effect of acute malaria on existing EBV-host balance.

    Methods.

    EBV genome loads in peripheral blood mononuclear cells were assayed by quantitative polymerase

    chain reaction, and EBV-specific CD8
     T cell responses were assayed by interferon- enzyme-linked immunospot

    assay.

    Results.

    Gambian children, from whom samples were obtained during an acute malaria attack and again up to 6

    weeks later, had extremely high viral loads, reaching levels that in the United Kingdom are seen only in patients with

    infectious mononucleosis. Gambian control subjects (children and adults with no recent history of malaria) had lower

    median viral loads, although they were still 10-fold above the median for healthy UK adults. Limited experiments

    with EBV epitope peptides (restricted through the HLA-B*3501 and HLA-B*5301 alleles) also suggested an impairment

    of virus-specific CD8
     T cell function in children with malaria, but only during acute disease.

    Conclusions.

    Acute malaria is associated with sustained increase in EBV load and, possibly, a transient decrease

    in EBV-specific T cell surveillance. We infer that the unusually high set point of virus carriage in
    P. falciparum

    challenged populations, allied with the parasite’s capacity to act as a chronic B cell stimulus, probably contributes to

    the pathogenesis of endemic BL.
     
  12. niall

    niall

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    Wow, you like most of us, are fighting a very tough battle indeed. Too bad you can't put that little viking to work around the house. All kidding aside, I never would have thought you would be working in a high stress/high pathogen exposure job. The cortisol being released in your body from the adrenaline rushes (stress) is one thing viruses thrive on. It is no wonder you can't do much on your days off. I fervently hope you can continue keeping your head above water until an effective treatment is found for our illness. My hat is off to you in the courageous way you are fighting the good fight.
     
    heapsreal likes this.
  13. jane52

    jane52

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  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Hi Vli, im doing alright, i did have like a viral reactivation a couple of weeks back that hit me like a brick(scared the crap out of me reminding of how bad i was) but i think being on the antivirals ive been able to turn this around quicker then i would have normally, i suppose its 2 steps forward and 1 back, but i am noticing stamina increasing slowly. I have about 5 months left on valcyte so time will tell.

    cheers!!!
     
  15. vli

    vli

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    Thanks for the update heaps--even when my Q was bumped up there by Jane! Your Valcyte trial will end the same time my Ampligen one does...
     
  16. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    i didnt even recognise your question was bumped by someone else, cognitive abilities definately arent 100%:thumbdown:
     
  17. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    It was interesting to hear you describe how you are coping with work and your illness, heaps. I have just thrown in the towel with my part-time cleaning job, as I had reached a point where I couldn't cope, even with a few hours a week. I am a little worse than you, by the sound of it, though I feel I am a lot better than many that post here. However, I used to use adrenaline to get thru the work, just as you describe, and would spend most of my time at home getting ready for the next work period.Had to get rid of my house quite a few years back.

    It is difficult to explain to work colleagues, even neighbors, about CFS. I usually regret it it later, especially when accusations of 'hypochondriac', or 'it's all in your mind' are thrown about. The trouble is I get embarrassed about not being able to do something or other, and try to explain why I can't do it. Ends up being a lose/lose situation.
     
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  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Rusy i just typed a reply then my computer had a brain fart :mad:
    My first day off today and the first few hours were ok with the help of some new supps im trying but basically after that i just had that fatigue unmotivating feeling, i wanted to clean this dump up that i live in but just felt like i had nothin in the tank. the good thing i suppose was that i didnt feel bad just blaa. Generally the next day or so i can do a few things but i do very little really.

    I dont really understand how i get through work but i manage but then when i get to days off i die in the arse. So i think i am probably really pushing myself through work and then days off come and my body shuts down and tries to rest. I think all the little things i am doing help me chug along like treating low dhea levels etc, sort of plugging all the holes as the come up, eventually im just going to be full of plugs and fall aparto_O . I have been going on with cfs now for 10 yrs and have 24 yrs and i can retire:eek: , i dont think i will make it unless this next 5 months on valcyte really makes an impact.

    Its definately an invisible illness. My work mates wouldnt pick it as im pretty easy going and jolly i guess(my sense of humor has probably helped me last this long), my actual work partner notices my brain farts as i ask people several times in the space of 5 minutes what their name is as well as leave equipment somewhere etc Let me say im not a danger to anyone in my job and have recently past a heap of assessments etc(with over 20yrs doing the same thing i should have a grip on it), when i need to go into paramedic mode im right but its all those in between moments when i dont need to be in paramedic mode my brain is like an old man with dementia:thumbdown:, not quite. i suppose it takes alot of energy to focus, even being kind to someone is draining. I am a people person and will chat to anyone but it drains me which is why i think when im on days off i like to keep to myself, sort of withdraw, probably a way to save energy.

    Im dreading the day when enough is enough as like u mention rusty no one will understand, im just hoping its later rather then sooner. I only have a few more tricks up my sleeve i can try left.

    cheers!!!
     
  19. jane52

    jane52

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    Oops, I'm sorry if I responded to a question not meant for me. I'm new here.
     
    heapsreal likes this.
  20. Jacque

    Jacque Senior Member

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    Just read all of your posts... I too am suffering with this viral HELL...and a bunch of other crap too... Been ill since I was 12... I have sky high titres for HHV6, EBV, HSv1 and 2 in addition to all other kinds of crap - thyroid - biotoxin illness.. and Chronic Lyme. I am seeing Dr. Kogelnik in California and am currently on the Rituxan - Having 3rd infusion on the 9th of Oct. Then will have 3 more after that over next 10 mo... Dr. K's theory is the viral infections hide in the B cells... Rituxan is a chemotherapy drug that wipes out B cells... Definately a drastic move on my part...but I am in drastic mode right now...as I am completely:ill: disabled...only able to just LIVE and somedays I don't do too good at even that... Will keep yall posted on the Rituxan...and am hoping nothing but the best for ALL of us WARRIORS who DESERVE to be WELL!!! Fight on!!:redface:
     

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