CFS: My NEW RNase L Values

Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Aug 18, 2008.

  1. ladybugmandy

    ladybugmandy Member

    hi all. i just wanted to share some new information about my condition. i am now under the care of dr. a. martin lerner and was once under the care of dr. leo galland.

    i have had CFS for over 15 years, which started after EBV infection. i did not begin treatment until 2007.

    in march of 2007, i had my RNase L tested for the first time. it was 1885, with normal being less than 50.

    after 5 months of valcyte treatment (under dr. leo galland) at 450 mg every 12 hrs., my RNase L value was still 1265 - not much less than before. this was considered bad news by the doctors i spoke to at the time.

    now, after 7 more months of treatment under dr. lerner with valtrex and small doses of valcyte (i can't take more due to liver enzyme elevation), my RNase L is now:


    the RNAP ratio is still very high, indicating presence of large(?) amounts of low molecular weight RNase L. so this is still not good.

    as time goes on, i am told that it MIGHT normalize.

    altogether, i am feeling about 12% better so far. biomarkers improve long before clinical improvement, i have heard.

    thanks for reading:0)
  2. Forebearance

    Forebearance Member

    That is great, Sue! Congratulations!!!!

    It must be a relief to see some improvement happening.

  3. ladybugmandy

    ladybugmandy Member

    thank you guys:) yes i am very very happy to see some improvement after 15 long years.

    however, the RNAP ratio is 9.8 with normal being less than 2.0. i THINK this means that i have 9.8 more times the defective low molecular weight RNase L than the normal RNase L.

    the people at redlabs suggested that i may need ampligen or somethinng else to normalize this but i think there is some possibility that it could normalize itself. i dont know.

    i called dr. ablashi and left messages for the redlabs director so i can ask more questions but it looks like i will not be able to talk to them.

    i would go to the medical library but i don't think i will be able to find out more about the LMW RNase L than what is already on the internet.

    the only thing i can be sure of is that the viruses are dying off. it still appears that my immune system is seriously messed up, even though the EBV and HHV6 are coming under control.

    this could mean inflammation in absence of infection.

    i wonder if i should put in an application to consult with dr. peterson since it will probably take over a year to get an appt.

    thanks again for reading...

  4. hopeliveshere

    hopeliveshere New Member


    Please let me know when you get your life back with this therapy. You might want to read about coinfections on the site.

    All the best, Hopeliveshere
  5. ladybugmandy

    ladybugmandy Member

    hope...thank you for the suggestion:) you always blow me away with your knowledge. are you sure you have brain fog??? lol

    thank you!!! as usual, you have made me feel better.


    ps....i wonder if the valtrex is more powerful that valcyte for EBV afterall. dr. lerner is really proving to be in a class all his own!
  6. acer2000

    acer2000 New Member

    Wow thats impressive... something to be encouraged by. Did they test your other cytokines and NK cells as well? It would be interesting to see if those have improved... Looks like you are at least hitting something with the Valtrex. Thats kind of interesting because IIRC you weren't like overwhelmingly positive for EBV, just slightly, right? Seems like the Valtrex is whats working though, as opposed to the Valcyte which you were on for 6 months previously. Although your RANSE-L did drop that time some 600 points. It just didn't drop to near normal...
  7. ladybugmandy

    ladybugmandy Member

    good memory! yes....but the 600 point drop was considered almost negligible at the time by the doctors i spoke to.

    and EBV antibodies were always normal until dr. lerner did the test in his own lab. then it shows a SLIGHT increase.

    i guess he is right about antibody measurements often being "useless".

    i wanted to test PKR and other things but it is too expensive for me right i just went with the RNase L stuff.

    also, if i get the more in-depth tests, i will not really have anyone to help me interpret them. dr. lerner doesn't really measure this stuff i don't think, and my brain fog is still not good enough to study it myself.

    i will have to wait and see whether taking care of these herpes viruses will lead to overall normalization.

    thank you!
    [This Message was Edited on 08/18/2008]
  8. jenn_c

    jenn_c New Member

    I have a few questions. What is RNasl, RNap, EBV and finally what kind of drug is valcyte? Thanks- Jenn
  9. ladybugmandy

    ladybugmandy Member

    hello. EBV is the epstein barr virus.

    for an explanation of RNase L and RNAP, please go to:

    good luck:)
  10. ladybugmandy

    ladybugmandy Member

    hi all. i was thinking....maybe since my RNase L ratio is still very high, all i have left is the LMW RNase L, which is "deadly".

    i feel better because the viruses are dying off and the antiviral activity is lessened, but maybe the immune system is so damaged after so long, getting rid of the viruses won't even matter.

    maybe the viruses arent the cause of CFS like i always suspected...maybe they activated as a result of my immune system being defective?

    but then why didn't i get sick before the mononucleosis?

    i don't understand this at fog is still too bad to read much...

  11. Slayadragon

    Slayadragon New Member

    Hi Sue,

    One theory regarding mold poison is that it chops up Rnase-L, thus making it LMW Rnase-L.

    Kenny de Meirleir's comment about this is noted in the CFS chapter of "Mold Warriors."

    (If this is the case, there may be an intermediate step. I believe that may be through interferon alpha, which came up extremely high for me on the ImmunoSciences CFS test, currently not being offered.)

    Total Rnase-L seems to be a measure of viral activity in general. With fewer viruses to handle, the system may see the need to create less of it.

    If indeed mold or some other toxin is chopping it up though, it would make sense that a high percentage of what's left would be LMW.

    I had that RedLabs panel done just before I moved out of my moldy house. It showed the expected high Rnase-L, with a high percentage of it LMW.

    Eventually I will have the test repeated and see how much things have changed since then.

    Regarding your question about why we get sick in a viral-onset type way: if indeed mold is a causal factor, it would seem that it gradually destroys the immune system (both Rnase-L and NKC activation/numbers).

    Finally, it becomes weak enough that it is unable to handle a particular virus (HHVAa or maybe something else) when it invades.

    In that case, the viral onset would be an indication of the "breaking point" having been hit.

    If that's the case, than people who have had just some exposure to mold (pre-CFS) would have a high percentage of LMW Rnase-L.

    It's hard to know though, since as far as I've heard this measure has been tested almost exclusively on people who already have CFS.

    Perhaps eventually more such information about LMW Rnase-L in pre-CFS'ers will be forthcoming though.

    Best, Lisa
    [This Message was Edited on 08/18/2008]
  12. ladybugmandy

    ladybugmandy Member

    hi all. i just called dr. ablashi and shared my LMW RNase L concerns. he said that the LMW can normalize over time, even without ampligen.

    he also said that dr. demeirleir's belief that the LMW RNase L is unique to CFS patients is proving to be incorrect because a dr. in glasgow showed, in 2000, that the LMW RNase L (37kD) is sometimes present in many types of chronic infections - and is NOT unique to CFS.

    dr. ablashi suggested a viral load test from ViraCor but i probably won't do it...i don't have that much money right now.

    he also said that Valtrex is proving to be much better for EBV than Valcyte. dr. lerner is right on!

    i asked about long term maintenance therapy with valtrex to prevent relapse. he said he is concerned about safety and suggested transfer factors made my some french doctor (i think).

    i asked him if valtrex taken forever would be safe with a lot of water - people with genital herpes take it afterall he said "maybe".

    i can't remember whether we were talking about viral load or antibodies or LMW RNase L, but he gave me a timeline of about 2 years for normalization or near normalization.

    kelly...may i ask where you read about the LMW RNase L? if you can dig up the article, i would love to read more about it...but if you cannot its might be over my head at the moment anyway!


  13. Slayadragon

    Slayadragon New Member

    I wonder what the "other chronic infections" that seem associated with LMW Rnase-L are.

    It would be interesting to see if they're the same ones associated with mold poisoning.
  14. ladybugmandy

    ladybugmandy Member

    hello. i am not 100% sure about this because of my memory, but i believe dr. ablashi did mention the LMW RNase L being present as a result of some toxins. he also mentioned bacterial infections.

    i will try and locate the paper from the glasgow doctor. it was presented in australia in 2000.

  15. Slayadragon

    Slayadragon New Member

    If by "bacterial infections" he meant lyme, I would guess that it might actually be caused by the toxins that the lyme makes.

    The biotoxins made by lyme and by poison mold are very similar.

    I'd like to hear more, if you find out.
  16. ladybugmandy

    ladybugmandy Member

    kelly..thank you! there is no rush at all....i cannot read anymore today either! lol

  17. SpecialK82

    SpecialK82 New Member


    I'm so happy you have some good news! It's nice to know the treatment you are taking is actually working on something. I am grinning from ear to ear - it's about time!

    I was just reading the redlabs site, I haven't seen this before, thank God there are labs taking an interest in us.

    Are you getting the RNase L test done through Dr. Lerner or was it ordered by someone else?

    I can't wait to see what happens with you next - I'm sitting on the edge on my chair!

    Warm and fuzzy hugs to you!

  18. Forebearance

    Forebearance Member

    Yeah, Sue, I now think that when I got CFS, it was a reactivation of EBV caused by my immune system getting messed up, caused by my exposure to mold poison.

    [This Message was Edited on 08/19/2008]
  19. ladybugmandy

    ladybugmandy Member

    kristina....awww..thank you for that sweet post and the well wishes. i do wish the same for you and will look forward to reading about your progress.'s so hard to know what came 1st.....immune defect or pathogen!!!!

    someone above asked if the RNase test was ordered by dr. lerner. it was not. he does not test this. i asked him if it would be worthwhile to test but he said it would not affect his treatment plans at all.

    i got a local doctor to sign off on the test (i pay out-of-pocket so they will sign anything).

    i once emailed dr. lerner and asked him if he has seen people with the LMW RNase L improve significantly and he said "yes".

    he might not talk much but that doctor knows his stuff!!!


  20. ladybugmandy

    ladybugmandy Member

    kathy..thank you. i am hopeful now. with real hope.

    i know that it takes a long time to get well even after the blood tests start normalizing...i have been told this by a few sources.

    now...its rest and more antivirals! (and prayer!)