1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Knitting Equals Pleasure, Despite ME/CFS
Jody Smith loves knitting. Again. She thought her days of knitting and purling were long over but ... she's back ...
Discuss the article on the Forums.

XMRV and the Immune response

Discussion in 'XMRV Testing, Treatment and Transmission' started by Djembe, Nov 4, 2009.

  1. Djembe

    Djembe Guest

    Hi,

    I was wondering if any one has any information on how XMRV effects the immune system or is it still to early to tell. A lot of what i have read about CFS would suggest that people have an alteration in there immune response and most people seem to have an underactive immune system resulting them getting sick all the time and catching every flu bug etc.

    Is it possible that the XMRV virus could alter the immune system the other way ie autoimmunity ?. I have had all the sore throats , herpes reactivation etc that other ME patients have but my immune sytem seems to kill everything in sight including my thyroid, resulting in normal TSH levels but very high Thyroid antibodies. I had my R-Nase L tested about 8 years ago by RedLabs in Belgium and it seemed to be normal.

    Anyone have any thoughts on this or similarly have an overactive immune system. I am presuming that an altered immune state would not just suggest that the immune system is weak but altered so that it cant identify the virus and hence may be targeting other systems instead of the virus, is it also possible that the alteraton to the immune system could result in the immune system not being able to switch itself off ?

    Sorry for the spelling my brain is like a paw paw :)

    thank you.
     
  2. Alice Band

    Alice Band PWME - ME by Ramsay

    Messages:
    175
    Likes:
    0
    UK
    Sorry I don't know, Djembe,

    However, I just wanted to say that when I had my Rnase tested, I was told that some "old" CFS and ME people were not getting a positive in this test and the theory at that time was that it changed to another Rnase level.
     
  3. Djembe

    Djembe Guest

    Thanks Alice
     
  4. Hysterical Woman

    Hysterical Woman Senior Member

    Messages:
    855
    Likes:
    6
    East Coast
    Immune System

    Hi DJ...

    For what it is worth I can tell some of my experience. It has been several years since I last had an immune system test, but at that time they measured several aspects of my system (NK, cells, CD8, CD4, ratios etc.). Out of all the results approximately 1/3 were very high, 1/3 were very low, and 1/3 normal. I have some classic CFS symptoms like swollen lymph glands. I catch almost none of the bugs going around (since 1991 when I became ill).

    It has also been several years (maybe 5) since I had an R-Nase L test and it was abnormal.

    Hope this helps,

    Maxine
     
  5. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    Interesting question. The virus has been found in the white blood cells - immune cells. Even if its not replicating alot it can still be pumping out proteins and disturbing their functioning. Alternately it could be always stimulating the immune system resulting in natural killer cell 'burnout' as Dr. Klimas has proposed.

    I asked Dr. Peterson about how it all got started. He still thinks the immune problems (or autonomic nervous system) problems all came first - they opened the door for XMRV.
     
  6. Sing

    Sing Senior Member

    Messages:
    1,313
    Likes:
    430
    New England
    Low WBC Count

    I wish I knew more about this. About 15 years ago when I knew I had a serious condition and started to go to doctors, they would do a standard blood panel. My WBC count was almost always abnormally low.

    I also had a "Live Blood Analysis" where a practitioner examined my blood under a strong microscope. She was at it for over an hour because she couldn't find a white blood cell (Is that an NK cell?) Finally she did--those cells are really big and normally easy to find, she said. I marvelled to see the beauty life under the microscope. Anyway, that was the most unusual thing she noted. When I'd ask doctors about it, they never had a good explanation.

    As for my immunity at the time, I would automatically get sick whenever I had to work three days in a row, so I had to go to a spread out, part time schedule. And I always seemed to have mouth sores and chronic infections I was fighting too. Low immune function, yes!

    I read from our scientific researchers that XMRV impairs the initial part of the immune process while HIV impairs the last. Is that your understanding too?

    Cecelia
     
  7. Aftermath

    Aftermath Guest

    Live Blood Cell Analysis

    Live blood cell analysis is a nonsense "test" used by alternative health providers. Most MDs put little stock in it because the test is not widely considered to have diagnostic value.
     
  8. dsdmom

    dsdmom Senior Member

    Messages:
    390
    Likes:
    45
    Cort - can you elaborate at all on this? I'm confused as to how autonomic dysfunction could open the door to a virus. It seems more likely to me that a virus can cause autonomic dysfunction. Am I completely off base?
     
  9. mojoey

    mojoey Senior Member

    Messages:
    1,097
    Likes:
    59
    Hey Cort

    Great to hear that confirmed by someone else. DSDMOM--that's also what Peterson implied during my office visit
     
  10. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    Both the autonomic nervous system and HPA axis regulate the immune response. Both of them in the state they are in CFS - sympathetic nervous system arousal and reduced HPA axis functioning - tend, as I remember, to push the immune system towards Th2 dominance which impairs our ability to fight viruses.

    It makes sense that something else is involved; after all you have XMRV and not be sick - so something must trigger its activation. Perhaps its ANS problems or an immune problem. Dr. Peterson appears to have stated that our NK cells are loaded with the virus (part of the innate immune response) but I think XMRV is also found in T-cells (later immune response).

    I have no idea if or how XMRV effects those cells but it certainly seems to be a possibility.

    I'm not clear which immune cells are in the PBMC's - peripheral blood mononuclear cells - which is what I assume was tested for XMRV.

    I really don't think anyone really knows which is the chicken and which is the egg. We'll see what happens when they knock XMRV down - do ANS problems persist or remain to some extent or do they go away?

    My guess is that people have an asymptomatic immune or ANS problem that, in certain situations, opens the door to XMRV infection or reactivation in some people - and then you get ME/CFS.
     
  11. lostinthedesert

    lostinthedesert Killer, Clown, Priestess

    Messages:
    115
    Likes:
    0
    I think that it is important to remember that "underactive" and "overactive" is a gross oversimplification of what is going on within the immune system. A better paradigm may be a distributed network where there are many different types of participants who each may specialize in one or more tasks. These workers are linked by a communications infrastructure (network) and the workers may even perform some of the communications tasks within the network.

    If we look at things that way, it becomes obvious that it is possible to alter the function or to change the level of activity of a particular class of worker simply by changing the messaging across the network or by altering the level of function of parts of the network. This allows for areas of modified function, increased and decreased activity to all exist at the same time. I hope the picture I have tried to paint here is useful in trying to understand a little of what may be going on. The actual details are incredibly complex and I can only comprehend and retain a tiny bit myself.

    Back to the original issue. From what I have been reading some scientists are theorizing that the cause of autoimmunity may well be impaired messaging within the immune system. It seems that such an impairment may cause not only alterations in levels of activity but also the mis-targeting of some immune functions.

    Somehow I managed to just focused on the autoimmunity part of the original post and left out the xmrv. I have no idea if any of this is relevant....


    Peace
    Susan - who is totally lost in fog but can fake it a bit in front of a computer
     
  12. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    I asked Staci Stevens about the ANS and sympathetic nervous system arousal and I expected her to say yes, that's whats occurring in ME/CFS but no -she simply said the ANS was a mess - it was acting like it was really confused - it was not really activated one way or the other - it was just acting incorrectly.

    Suzanne Vernon's work suggests that the immune networks are messed up in ME/CFS; ie the very complex immune interactions that go on all the time in the body are different in CFS patients; one type of immune cell should be in communication with Y cell but its talking to Z type cell. Our networks appear to be elongated and more complex than they should

    I think its much more complex than we can conceive. I was told the WPI is testing Ampligen in cells taken from different patients against XMRV; Ampligen is working in some patients and not others! These are just cell cultures!
     
  13. lostinthedesert

    lostinthedesert Killer, Clown, Priestess

    Messages:
    115
    Likes:
    0

    Aha! add that to the mix...self modifying networks and/or networks changed by out outside influences.

    It makes sense since my labs DON'T make sense and indicate that my hypothalamus is likely made of moldy swiss cheese.

    I have been worried about Ampligen for many reasons but still have held some hope that it would prove safe and effective in the majority of cases. I do wonder if tweaking of the immune response - drugs like Ampligen - may be our best hope assuming that XMRV replicates as slowly as they say.

    Peace,
    S
     
  14. Forebearance

    Forebearance Senior Member

    Messages:
    390
    Likes:
    112
    Great Plains, US
    My understanding of biotoxin illness is that the innate immune system is going crazy, trying to warn the acquired immune system that there is a poison in the body, and the acquired immune system can't see it and so it isn't doing anything about it.

    That is Dr. Shoemaker's theory and if a person with CFS has this problem, as I do, then it certainly seems to imply a messed-up immune system that is both over-active and under-active.

    In the early years of my CFS, I would go through a cold in three hours, because my immune system was so revved up. In later years, I caught colds very easily, as if my immune system were weak.

    Forebearance
     
  15. dsdmom

    dsdmom Senior Member

    Messages:
    390
    Likes:
    45
    I guess I just have wishful thinking that someone can say definitively that my ANS issues are caused by XMRV and if/when we treat that, my ANS will just be fine! ;) No more orthostatic intolerance! No more GI issues! Nerves begin to regenerate! :D Wouldn't that be lovely...

    m0joey - You say "that's also what Peterson implied during my office visit" - I wasn't exactly sure what you meant. That XMRV can cause ANS issues or the other way around?
     
  16. lostinthedesert

    lostinthedesert Killer, Clown, Priestess

    Messages:
    115
    Likes:
    0
    Yes and the question then becomes "Why can't this also happen in the presence of toxins that are produced internally by bacteria or triggered by proteins from viral activity." Of course it can with toxins, we see this with Lyme so why not viral proteins.

    If XMRV allows all sorts of other infections to flourish, it is possible that some pathogen or product will elude the acquired immune response yet still trigger that complementary path of the innate response. The classical path of the innate response IIRC involves antibodies that we were coded from from birth and is has somewhat more inflammatory action that the acquired response but the complementary path is highly dependent on inflammatory response.

    Besides infection, this nonstop inflammatory action seems to be what we share and what I believe does a lot of the damage.


    Peace,
    S


    As long as the toxin can
     
  17. hvs

    hvs Senior Member

    Messages:
    292
    Likes:
    0
    Is it any wonder we appreciate Cort so much? This guy's got the inside scoop! :)
     
  18. lucysun

    lucysun

    Messages:
    17
    Likes:
    0
    we love cort

    cort keeps us so informed and up to date in such an unbiased and caring way. i declare tomorrow "hurray for cort" day!

    i am curious how allergies play into all of this. i have severe food allergies - was actually in the ER yesterday for an acute reaction to cashews.

    just another part of the malfunctioning immune system?

    -lucy
     
  19. Incase anyone's interested in the CNS and ME I thought I'd write some experiences as Cort was mentioning it.

    I already have a diagnosis (twice) of POTS/Dysautonomia in Hospital.
    My pulse was 170bpm on a TILT test after 2 mins and I got bad chest pain last time it was checked. Interestingly, this was worse than when I was bed ridden, and I got the same pulse rate but lasted 10 mins on the test.
    Proving POTS is not caused by immobility - as Psychiatrists like to claim.
    (Many Psychiatrists do not belive in POTS, or that someone with ME can have it). The normal word they use is 'de-conditioning'.

    In the clinic I was in, they use a $40,000 computer and equipment that takes your blood pressure every SECOND on your FINGER amongst other things. Plus lots of other sensitive tests only a few hospitals in this country have. Autonomic tests.

    On a TILT, the cardiologist said I developed a 'Saw Tooth' curve that shows my sympathetic nervous system is going insane - to stop me from passing out as the blood is pooling in my legs/feet and out of head/heart. Without this, I would black out from standing up, I was told. Hence I have POTS - it's a compensatory measure. Other people simply get hypotensive, and fall over.

    So take that into consideration using super sensitive tests very recently and now wind the clock back........ 10 years ago I had a basic test for autonomic nervous system issues - called a heart rate variabilty test that uses an ECG connected to a PC. They use it in hospitals to measure cardiac function. Again on this test, it showed:

    Super sympathetic nervous system standing up.
    High sympathetic nervous system laying flat with eyes closed.
    Zero para-sympathetic nervous system laying flat with eyes closed.
    ZERO! That's crazy.

    Parasympathetic nervous system (to my knowledge) is vital for health, sleep and energy restoration. So it's never changed in the last decade. The first symptoms I ever got with ME, being a keen mountain biker and adrenaline junkie - was getting panic attacks, chest pain, adrenaline over rush - simply from overtaking traffic on a road, or cycling fast and doing stunts and having fun - addmitedly when very knackered - only down my road!

    (My hair would feel like it was standing on end, when I came to a stop signal driving). This inevitably spilled over into cardiac pain, tachycardia and shaking. All with no conscious input. Simply the act of driving, or listening to music (Techno).

    To put that in context all these years later, I cannot leave my house to get to a doctors appointment 1/2 mile up the road without drugging myself on Diazepam. I can start shaking and get bad chest pain, or a sudden tachycardia. I have to very careful not to set myself on Dysautonomic fire basically - and live life like a recluse. I would describe having ME and POTS is like being flammable and moving, eating, peeing - basically anything, can be a spark.

    I tried going to college when I had a brief remission. Again, the same horrible hair standing on edge feeling (like a 'ghost' sensation/shock), over a simple argument in class appeared. I got severe chest pain and had to be taken home, another time to ER! Yet I wasn't that bothered, just a disagreement (emotional) kicked this off. Same as if in a restaurant. A customer started yelling, and I ended up going to ER, again. It's impossible to be honest.

    It's hate not living a life with POTS/Dysautonomia - and having ME ontop just makes matters so much worse. Apparently people with POTS aren't as bad as this, as they're otherwise healthy, they don't have the profound muscle weakness - as so their hearts can take it. Mine can't. Certainly can't as I get older. Pulse of 130 now and I have difficulty breathing. I never hyper ventilate. Maybe this is my down-fall? I am too exhausted to breath faster, I can try and breathe deeper, but not faster. Way too worn out. So I end up nearly suffocating. Only way to deal with that - is never trigger it. So I don't go out my door anymore. I was in 2008, but I got a lot worse.

    I've never met anyone like me, or heard of people with this amount of messed up nervous system. Even using a phone, I get totally innapropriate input someone handing me the phone, and can tip over into a panic attack (not me panicking, my brain dysfunctioning). So I don't talk to anyone.

    Lastly, make sure you pick your friends well if you are like me and reading this. Your enemies can see you are powerless and hold you to ransom by your own body - simply by setting you off into what I call an Autonomic Storm. Basically a totally inapporpriate 'burst' of sympathetic nervous system activity than can induce convlusions, seiziures, angina, even SVT.

    In Hospital a nurse had to go borrow some headphones from a patient, and put them on me and I was forced fed Maria Carey! Eventually I stopped shaking and my pulse and blood pressure were less dangerous. My body gets 'stuck' in this mode. Nurses just think, what the hell? That patient is shaking violently, but smiling and perfectly calm - but is body is going out of control on the bed.

    Frustratingly (understatement) this does not have to be caused by an inappropriate stress response, it can be caused by exercise (my version) and even romantic activities.

    When I had a girlfriend, I visited ER over 30 times, and hardly ever since.
    This was always triggered by romantic activity - the heart being 'flicked' into a very fast pattern of IST/SVT, or many hours later - suddenly developing cardiac issues, or nervous system going wild. So I could walk into a bedroom, and not be able to walk out - literally. Now that's what I call devotion. She left me anyway. :mad:

    The worst shaking I've had was caused by eating a biscuit, momentarily choking - and then ending up on 10mg of Diazepam and waiting for an Ambulance due to going into hyper drive. Paramedics took me to Hospital where I continued to shake for a long time - with them scratching their heads, asking if I was on 'SPEED' (no joke), or was I epileptic.

    Back then, I didn't have a diagnosis of POTS/Dysautonomia, and they simply wrote me off. On a positive note: Getting a TILT test and other Autonomic Nervous System tests is the best thing you can do - to stop being labelled as Psychiatrically ill. However, you're still at the mercy of your dysfunctional body/brain.

    For example,despite being totally calm and relaxed, just typing this I have freezing cold 'adrenaline' hands -as if I am in a screaming row/argument yet I am not. Simply the brain kicking off another little event. Now I have edited this, my hands are nice and warm and I'm not twitching/jolting at all.

    To make you guys see what I mean maybe, I used to get very shaky, and again ice cold hands and chest pain - playing video games over the internet years ago. Despite knowing it was just for fun. It's as if my brain (conscious) cannot determine that a video game is just fun and a laugh - it launches me into an incorrect adrenaline storm, and on occasion induced convulsions, or chest pain. I can't think of many disease that cause chest pain from playing an exciting video game that you enjoy!

    Someone should do EEG studies on people with ME and POTS and see if brain activity causes this (e.g. driving, video games, stress, talking) alters brain waves.

    At my worst, just eating does this. Often when I eat, I still get little shudders and judders - which are usually the start of convulsions/big shaking attack that need hospitalisation. It's like eating ice-cream, but much worse - like a tremmor/spasm inside. This is what Dysautonomia does, and I hate it. Even emptying your bladder can kick this off, or kick off a sudden vertigo/dizzy attack balance loss.

    Basically, any nervous system activation/alteration triggers it.

    One episode in Hospital, a doctor once (on a ward round) hooked me up to a heart rate monitor, go away - then come back with his staff and point to the heart rate speed and notice it was between 120-150 simply from the effort of talking to him. Addmitedly this was when I was very very sick and felt like I was dying basically from exhaustion and couldn't even go to the toilet,wash, or barely speak, but that's not the point, there's a reason it does it, and I wish there was some help.
     
  20. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    What a story Cold Taste. I think you are like me - 20x's amplified. My sense is that my system over amplifies everything - I really think this is all the ANS (ME/CFs and POTS) - and your system is just so sensitive. Mike Dessin had some very similar experiences - have you been following his story?

    Your HRV readings are typical only worse of the typical ME/CFS patient.

    My experience is that good exciting experiences can tick things off pretty good; its the state of excitement.

    Man oh man! Hang in there!
     

See more popular forum discussions.

Share This Page