CFS: LMW RNase L........questions

Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Sep 17, 2008.

  1. ladybugmandy

    ladybugmandy Member

    hi all. i am again trying to make heads or tails of the LMW RNase L situation.

    antivirals have resulted in a dramatic drop in overall RNase L activity for me, but i still have 9.8 times more LMW RNase L (referred to as the "deadly" RNase L in litertature) than the normal RNase L.

    dr. ablashi feels that it may be possible for the RNase L to normalize over time. he said a group from glasgow showed that LMW RNase L is present in some people with acute infections, irrespective of CFS.

    i asked him for the name of the doctor who showed this but he could not remember. he said it was presented by a woman from glasgow in 2000 at an australian convention but i have been unable to locate the paper.

    i spoke to dr. sudaholnik, who feels that one would need ampligen to normalize the RNase L.

    i asked dr. suhadolnik if everyone produced the LMW RNase L when they have infections and he said "no. if that were the case, the antiviral pathway would be of no use."

    i brought up the montoya patients who recovered with antivirals and asked if it was possible that they did not ever have the LMW RNase L.

    dr. suhadolnik said, " is possible but we will never know since they were not tested."

    i asked if it was possible if long-term, chronic infection with EBV could result in LMW RNase L, and dr. suhadolnik said it would be worthwhile to investigate whether EBV released a protease that cleaved RNase L. he said no one has studied this.

    overall, i got the impression that he, peterson, and demeirleir strongly believe that ampligen is needed to affect recovery. he expressed great regret that it was not widely available and seemed frustrated with the scientific community and their handling of CFS.

    unfortunately, in his recent valcyte trial, dr. montoya did not test for LMW RNase L but only overall RNase L activity.

    looks like there isn't any more information out there about this rogue RNase L, but i wonder if it explains why i am still sick even though my RNase L activity is down (although i still hope that i am wrong to worry and will experience progress over time).

    so....chicken and egg.....did the LMW RNase L defect precede the infection or did the chronic infection trigger the cleavage of the normal RNase L? (and if it did, why did it do it only to some hosts and not others?).

    if the LMW RNase is sometimes present in acute infections as the glasgow group stated, why is it present in me? my infection cannot be considered acute after 15 years....can it?

    or maybe RNase L is not even important?...dr. lerner and dr. montoya don't seem to be too concerned about it...?

    any thoughts?


    ps.....i have brain fog so half of this post may not have made sense lol

    [This Message was Edited on 09/17/2008]
  2. ladybugmandy

    ladybugmandy Member

    i forgot to ask.....if anyone out there seeing dr. montoya, bell, guyer, bateman, or any of the other well-known CFS doctors could ask about the LMW RNase L and their thoughts about its normalization, i would be very grateful!

    thank you!
  3. ladybugmandy

    ladybugmandy Member

  4. mindblower

    mindblower New Member

    Low molecular weight(LMW)Rnase L is a by product of low glutathione. Glutathione becoming low means cysteine, one of its key components and an inhibitor of calpain activation, becomes low too, thus potentially disinhibiting calpain, a protein degrading enzyme.

    Disinhibited(ie, activated) calpain cleaves normal weight Rnase L, producing LMW Rnase L. And I think the issue of LMW Rnase L in CFS is this simple, IMO and based on referrenced discussions of this topic in Yahoo's CFSFMExperimental list archives).

    In short, it's a downstream phenomenon that indicates low glutathione, which MAY in itself indicate active infection, known to lower glutathione as does too, to consider, heavy metal toxicity, methylation cycle blocks if RichVank is correct, and excessive adrenalization from other stressors, including not oft discussed poor serotonin transport, even if serotonin levels are normal, and hypometabolism of the brain's right dorsal lateral prefrontal cortex(DLPFC), a common finding in CFS SPECT imaging per Mena and Goldstein.

    Of course all or only parts of the above could be cause to a low glutathione to abnormally high LMW Rnase L vicious cycle. But whatever the case, getting at those deeper issue(s) should clear up this downstream matter before ever needing to resort to the expensive and cumbersome treatment that is Ampligen, IMO.


    [This Message was Edited on 09/17/2008]
  5. ladybugmandy

    ladybugmandy Member just blew my mind!

    do you have an article i can read about this!?

    thank you:)
  6. wldhrt

    wldhrt New Member

    Your RNase-L levels have to be completely in the normal range before you'll notice a big difference in the way you feel. It is possible that the anti-viral treatment you're on will bring those levels down to normal, but it takes time. Another factor in the cleaving of Rnase-L is elastase, which is something else that needs to be addressed.
    Mindblower is correct about the glutathione as well; you might want to supplement with an encapsulated form, as the stuff you can buy in the health food store is not readily absorbed. Or you can supplement with N-acetyl cysteine, which will increase your own glutathione.
  7. acer2000

    acer2000 New Member

    Thanks for the info on this, I'm curious where you guys are getting the info? I'd like to read more? Or is this info coming from your Dr.? (Peterson, DeMeirlier, who?)

    Also, I have read info about taking N-acetyl cystiene and how it raises glutathion production, however the doses used in the studies (in aids patients) were really really high (like up to 8g a day), can anyone point out what the smallest effective dose is?

    [This Message was Edited on 09/18/2008]
  8. mindblower

    mindblower New Member

    Just type in "Calpain".

  9. confetti11

    confetti11 Member

    I'm a patient of Guyer's and I'll just add a bit of my experience to the mix...

    My glutathione tested low about 2 years ago. I was put on lipoceutical glutathione but always had trouble with it...from what I could track with my symptoms. It still seems, although I find it hard to believe, that it caused me to have bad bouts of malaise every two weeks for a few days on the dot. I swear, you could set your watch by it.

    I told Dr. Guyer about it and he said he didn't see any way that the glutathione could be doing it. And in fact, if one of the reasons behind the every two week episodes was some kind of odd die-off, that he would suggest then that I take more glutathione when expecting an episode.

    Then I did the Detoxigenomics profile (which I don't really understand either but as I understand tests for our genes that detoxify) and there were problems there, as expected. It was then that Dr. G said that perhaps the trouble I seemed to be having from adding glutathione was that it was needed further down the detoxification line and not addressing the phases that happen before glutathione was needed was actually causing some kind of back up...or something like that...hence the trouble with supplementing it.

    I took the glutathione out and the episodes stopped.

    I add this to the discussion as food for thought or in case anyone seems to also have trouble with glutathione. I can't recall exactly how he explained it so maybe some of what I said here makes sense and someone else can clarify. My appts with him are so quick and jam-packed that I don't always clearly understand the explanations...I wish I had the mind of a scientist...would probably make it easier!

    By the way...the path we took to help with detoxification is some variation of clearing the methylation block...from what I can tell. I'm still experimenting and getting into it.

    I also just took the RNase test and will be discussing it with him soon so I'll try to get him to explain it all to me and let you know what he says.
    [This Message was Edited on 09/18/2008]
  10. ladybugmandy

    ladybugmandy Member

    so i'm thinking the RNase L being is cleaved by, as kelly mentioned somewhere, some inflammatory substance (elastase??) or protease from a virus.

    a CFS patient who is on ampligen and who corresponds with me with occasionally is sure the LMW RNase L was there before we got sick and is the reason for our being sick (if i understood her correctly).

    i think she notices more correlation between her health level and the LMW RNase L ratio (she was on ampligen).

    sometimes i wonder if she could be right...since the LMW RNase is still floating around in my body in large amounts, while my overall RNase L activity is down.

    everyone seems to have their own theory about whether the LMW is a symptom or a cause.

    i just wish i was sure as to what it meant...and what it could mean for my future...

  11. ladybugmandy

    ladybugmandy Member

    nebulizing glutathione..i have never heard of it! i would much rather take suppositories than the awful undenatured whey protein (which i haven't taken for a year). it just makes me gag. thank you for this info.

    thanks kelly...i keep meaing to go to the medical library at the university downtown and do some real digging...its so much better than online...but things keep coming up that require the precious little energy i have.


  12. ladybugmandy

    ladybugmandy Member

    hello. i found this 2005 article about elastase cleaving the RNase L. so...if the antivirals are working on me, why isn't the inflammatory response decreasing?

    i hope that it just takes a long time for the viral proteins to leave the cells as K. Loomis said...but i would expect to be feeling a little better by now.

    i'm still looking for ways to get valcyte in case i can't go back to work. the only thing i can think of is to marry an american and get it free from roche lol


  13. wldhrt

    wldhrt New Member

    I believe you've stated that you have no evidence of gut permeability - have you done the immunobilan test or any lab work that would show dietary proteins circulating in the bloodstream? I mention this because elastase is produced when these foreign bodies enter the bloodstream - and elastase cuts the Rnase-L molecule into fragments. Or maybe you've had your elastase level checked out? This might shed some light on what's happening.
  14. ladybugmandy

    ladybugmandy Member

    hello:) thank you for the suggestion.

    i had some gut permeability testing done by dr. leo galland who, i understand, is a gut expert. i had to drink something and urinate and send part of the urine to some lab i think. he said it was normal.

    perhaps i should get this tested again....

    the last time i had my elastase checked, it was VERY VERY high. i should have gotten it tested with the RNase L the last time, but i didn't want to pay so much. i wish i had!

    i have a feeling my elastase is still through the roof since i am so sick.

    perhaps i will test it in a few months...

    thanks again. hope you are well.

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