Need help understanding RNase L Results.....ladybugmandy and anyone

Discussion in 'Fibromyalgia Main Forum' started by redhummingbird, Oct 30, 2008.

  1. redhummingbird

    redhummingbird New Member

    I finally got Redlabs to fax the results of the RNase L panel. I thought it would give me some understanding of what is going on but I can't figure it out.

    Here are the results:

    RNase-L Activity Assay = 15 (Normal range is less than 50)

    RNase-L Protein Quantitation= 2.6 (Nomal range is less than 2.0)

    I have high IgG titers to EBV and HHV-6. I got tested through Focus for both (EBV 1:320 HHV-6 1:320 then dropped to 1:160).

    Last week I was retested again for EBV through LabCorp. My IgG was 1600 times normal. They made a mistake and didn't retest for HHV-6.

    I can't figure out what is wrong with me. Am wondering about mold poisoning-I found some behind a wall that I sent off for testing.

    None of my lab tests make a bit of sense or explain what is going on. I'm going crazy as I am housebound.
  2. Forebearance

    Forebearance Member

    Hi red,

    All I can contribute is that I haven't been tested for many viruses and I do have mold poisoning and when I had my RNaseL tested, it was in the normal range.

    I hope you can get some help with figuring this stuff out.

  3. redhummingbird

    redhummingbird New Member

    I was thinking of you tonight and trying to figure out where to post so you would see it and respond because I wanted to ask you what the results were of certain tests.

    This is very helpful. Thank you.

    What was your MMP 9 level? I know you have the mold susceptible gene. And you have low (or had) low MSH?

    Did you have your C4a and C3a level tested?

    Actually, I'm going to go back and read some of your posts.

    I sent a sample from the wall to MouldWorks today. Am also looking for a new place to live.

    What tests did you have that determined you had mold poisoning?

    I'm just trying to turn over every rock so I can get better.
    [This Message was Edited on 10/30/2008]
  4. mindblower

    mindblower New Member

    Hi, Redhummingbird.

    You are on point, IMO, to doubt the supposed central relevance or lack there of regarding all of these tests in ME/CFS. View my profile and some of my recent posts on RNase L to see why I say this.

    If I were you, I would let go of RNase L and non-diagnostic infection testing altogether. These sort of tests remain only marginally insightful at best and are more a distraction than helpful to addressing the central issue in this condition overall, IMO.


  5. Forebearance

    Forebearance Member

    Hi rh,

    I have a mold susceptible gene and a low MSH susceptible gene. I do have low MSH right now, but it's not as low as some people's gets. Which is odd considering that I have the gene for it and I've been sick a long time. I think it might be the methylation supps that have helped it.

    I did have my C3a and C4a tested. They were helpful in diagnosing me with mold poisoning. I went to this page: and did the tests that Dr. S. requires. According to what he says in MW, I had enough abnormal test results plus the genetic results plus the abnormal BIRS test to qualify as being mold-poisoned.

    I'm sorry, but I can't look up what my test results were right now because I'm packing to leave my parents' house tomorrow. You can find them on one of my past journal threads, I think.

    I have a couple of samples at MouldWorks too!

    Good for you for looking for a new place to live!

    I think that the way Redlabs does RNaseL tests is confusing, unless you're a biochemist. I liked Immunosciences better.

    I'll be without internet for a few days now, so I won't be able to respond during that time.

  6. redhummingbird

    redhummingbird New Member

    Thanks for your response. It's true that I'm becoming increasingly skeptical about the relevance of these sorts of tests.

    I read your profile. It sounds like we have headed down similar paths in some ways.

    I think the RNase Test Panel is useless. I was going to quote a statement on the test that basically said the test result could be normal or abnormal so it should be used along with clinical symptoms. My doctor presented the necessity of this test in order to figure out whether I had an active viral infection. Had I read the statement from Redlabs, I wouldn't have bothered to waste $445 for this test.

    Are you still on CFS experimental?

    I'm curious. I've only been at this since getting diagnosed in Nov 07 (symptoms started in July, 07). What is your opinion what is useful for assisting recovery or getting the immune sytem regulated again?

    I'll have one more appt with my CFS doctor since canceling my appt will cost money. After that, I think I'm done with paying out of pocket for useless tests and CFS doctors. After 7 months of seeing this MD, I've had maybe 8-10% improvement at most. It could be attributed to getting more sleep from the doxepin or 3 months on the methylation protocol, or the Cell Signaling Therapy.

    I hope to see you post more.
  7. munch1958

    munch1958 Member

    I'd be happy to help you with your test results. If you still have my number call me. Otherwise contact me at that other spot.

    I have not had the R-NASE-L testing done yet. Would like to do this if I still have issue after Lyme treatment is complete.

    It is clear to me that the immune supression outcomes of Lyme are the reason why our immune systems allow the overgrowth of yeast or fungus, viruses and bacteria. We know this from the Lymerix vaccine trials.

    People who were vaccinated with Osp A or outer surface protein A (a chunk of the Borrelia bacteria) got all of the immune suppresion effects of Borrelia without the spirochetes. I can send you a chart of the other outcomes of a Lyme infection if you wish.

    We are the host organism. One of the ways spirochetes can stay alive in us is to shut down our immune systems. They do this by altering thryoid, adrenal and growth hormone function.

    I think we will see a shift in conventional medicine's way of thinking about chronic infection. There are far too many of us that are sick to keep telling us that it's all in our heads. If it's in my head then how can it be in yours too?

    We probably have the exact same symptoms so how'd we know how to make up all the same ones? Psychic symptom sharing? The Secret? It has to be symptoms from the underlying infections and hormone deficiencies.

    I got kyphoplastiy done on 2 disks on Oct 9th on T12 & L1. I need to go back for phase 2 in Dec. They fix L2 & L4. At least I can stand to sit up for a few hours at a stretch now. Beats being in bed 24/7. They can only fix 4 out of the 7 fractured vertebrea. GROAN!

  8. ladybugmandy

    ladybugmandy Member

    hello. i am afraid i cannot contribute much information. your antibodies certainly suggest viral infection but the RNase L activity is normal, whereas the LMW/normal MW RNase L ratio is not normal...i have never heard of this before.

    i guess you have some LMW RNase L so maybe you have some inflammation from something else...such as mold or something??

    for me, i knew i had a virus because my RNase L was 1885!....but only 40% of CFS patients even have elevated RNase L. i have very high levels of the LMW RNase L...much higher than yours.

    i do have some advice though. there are 4 people that may be able to shed some light on the situation. Vincent Lombardi, Ph.D....the director of redlabs, whom i have spoken to. call redlabs and ask to speak to him. you may have to wait a few days or leave a few messages but he will call back.

    before contacting dr. lombardi, you can speak to craig at redlabs. he is easy to get a hold of and knows a lot, too.

    the other contact is prof. suhadolnik...he is the one who discovered the RNase L abnormality in CFS patients. he is at temple university and is very nice. i have spoken with him more than once. he is usually in the lab but does not work full time i don't think. he may be semi retired.

    you can also speak to dr. ablashi from the HHV6 foundation, who is very very nice indeed. let me know if you are having trouble contacting him.

    you do not have high RNase L activity so i think that must be good news....?

    keep digging!


    [This Message was Edited on 10/31/2008]
    [This Message was Edited on 11/01/2008]
  9. mindblower

    mindblower New Member

    I post here now mostly when I do in this community rather than elsewhere. So little new insight and discussion these days that can't be found in list archives on any one of these lists has me simply picking and choosing my spots to contribute.

    RNase L testing is practically useless for us we seem to agree. The popular lyme testing often discussed in this community is not diagnostic despite the "sales spin" some LLMDs and testers use regarding these labs to suggest otherwise.

    Better to skip them, save money and time, and stick to the more tried and true observation of clinical symptoms and history to make or rule out this diagnosis. Experimental tests not covered by insurance and that have never been a requirement to secure the diagnosis sufficiently to move on to trying antibiotics really aren't of practical relevance to us.

    Same goes for the non-diagnostic viral testing too. And it's looking more and more these days that viruses are NOT the real perpetrators of this condition's chronicity though they can be one type among several potential biological stressors part of initiating it.

    Predisposing issues, more importantly, continue to be the more interesting research area to watch and explore, IMO. Rich's theory underscores this point as did Dr Goldstein's, some of Dr Cheney's data, though not his theory, IMO, and other researchers looking into ME/CFS brain function and neurotransmission related genetics.

    As far as optimal treatment goes at this time, I think focusing on things to help neurotransmission, whether this involve trying different medications or cortical stimulating device therapies as I've discussed in recent posts here, and helping build glutathione status, which can eliminate flu-like weakness, some stamina issues, ME/CFS related thyroid issues and adrenal issues, among a few other things, are what can aid some if not complete health progress.

    Ultimately, ME/CFS is a completely conquerable condition I suggest for most if not all with this diagnosis. But continued rigor and courage too, perhaps, are necessary to weed through so much fluff continuing to swirl about this diagnosis to get at truth.


    [This Message was Edited on 11/01/2008]
  10. winsomme

    winsomme New Member

    i agree that it is probably not diagnostic of something very specific, but i also understand why some people want to have it done.

    for instance, i went and saw Dr Klimas a few years ago because i wanted someone knowledgeable to take a close look at my immune system. I knew that it would not necessarily lead me to a cure, but I wanted to know for myself what the state of my immune system was.

    It was highly irregular. is it from genetics? is it from some continued exposure (like mold)? is it from a chronic infection? is it from some block in a metabolic process like methylation? there are lots of unanswerable questions at this point. but for me it helped guide what treatments i would try and it also helped to potentially explain the reason why some of the treatments i tried did help.

    for instance when i was at the worst of the worst my mainstream Doc did a Lyme ELISA which came back positive. He put me on doxycycline and i made a huge bounce back...

    doxycycline in addition to being an antibiotic also has immune suppressing capabilities including modulation of NF-?B (nuclear factor-kappa B) did the Doxy help because it fought Lyme or because it down regulated my immune system? I honestly don't know. but i do know that my immune system was in overdrive when I saw Dr Klimas.

    now, is the immune system in overdrive in all CFS patients? i have no idea. the gene studies of Dr Kerr seem to show some immune system involvement which prompted him to look into treatments like Enbrel type meds and interestingly Interferon like is used in MS. I don't know the state of those follow ups, but i know that based on his gene studies, he thought those were reasonable lines of scientific investigation.

    It is frustrating that there are so few answers in CFS and that as patients we are basically forced to try unstudied treatments if we find them reasonable (obviously a personal choice), but that is unfortunately where we are at in CFS research at this point.

    so spending that large amount of money on an RnaseL test is a tough decision as many of us are short on money and it doesn't necessarily lead you to a treatment that would help, but i also understand why some people find it useful to have done.
  11. winsomme

    winsomme New Member

    i also wanted to point out that there are people who have recovered on antimicrobial treatments. treatments designed to address viral and bacterial infections.

    I would say that one problem that we have in CFS is that the testing available to us right now makes it difficult to pinpoint which of these treatments might help someone specifically. Thus, we are basically left with trial and error. this is true even with treating neurological symptoms. in fact it is my understanding that Dr Goldstein's whole process was just that. trial and error.

    not ideal, but can be very useful.

    an interesting point is that this is not just true for CFS, it is actually true across the board for other conditions. it's just much much more so for CFS.

    i was visiting with a friend of mine who is a professor of clinical medicine at a big teaching institution. he was in town at a genetics convention. and was there to learn and bring back info to use in his teaching process. i found this interesting in that he was a professor of clinical medicine as opposed to say more research types of study.

    he said something very interesting to me. he said that if you look across the board at standard treatments for diseases....these being VERY well studied treatments that are used in practice everywhere...they find that on average treatments only work something like 50% of the time. so one of the big pushes in medicine today is try and find if genetic profiles can help identify better who will respond to which treatment the best. and this is for conditions that have massive amounts of research on them like high blood pressure, cholesterol, etc...

    applying this to CFS, which is far less understood than other conditions, how do we know that one factor in a study on CFS patients isn't that they just don't know how to target (lab-wise) the patients that would best respond to a particular treatment....for instance, Valcyte. maybe we just don't know yet how to identify the best candidates for this treatment.

    anyway, my main point is that IMO it seems premature to call something a dead-end. just my two cents.
  12. ladybugmandy

    ladybugmandy Member are totally correct. the RNase L MAY shed light on one's condition but may not. in my case, it pointed to something i had long suspected (chronic EBV) and also suggested that i was in remission when it dropped dramatically after the proper antiviral combination, and coincided somewhat with my clinical improvement.

  13. mindblower

    mindblower New Member

    It's never premature to call anything a practical dead-end or useless which has in any real way shown itself to be. It's actually ridiculous and a potential danger to opportunity loss(ie, wasted time, energy, money) to not recognize futile theories, tests, and treatments in ME/CFS or any other worthwhile endeavor for that matter.

    There continues to be a bit too much of this in this community and RNase-L testing does fit this scenario, though it's seeming emotional support to some I grant you. But that's a whole other matter and something that can be effectively addressed in more practical ways now short of cure.

    And as for antimicrobial therapies, so far most to almost all fit this futility model too and I suggest it's NOT true that there have been significant numbers of sustained recovery having happened in clear ME/CFS cases as a result of their use. Recovered and "very useful" are awefully big words to live up to in ME/CFS and I suggest that generally when they're used they're not reflecting a sober minded-accurate measure of actual results from a treatment.

    I challenge you to prove otherwise. I challenge you to do rigorous research and investigate such claims personally and thoroughly, as if your life depends on getting at what truly substantial benefits actually did stick, if any, in such stories.

    It's absolutely appropriate and actually stupid not to second guess every claim made about any treatment, test or presumed specialist no matter how sincerely stated, credentialed or number of years in this field. Take nothing at face value in ME/CFS and don't be surprised after such research you find that more than 9 out of 10 seemingly valid claims related to it were dead on arrival, simply never so.


    [This Message was Edited on 11/02/2008]
  14. mindblower

    mindblower New Member

    You misinterpreted or misread most of my last post and you're comments make me think you're missing this key point:

    "...It's absolutely appropriate and actually stupid not to second guess every claim made about any treatment, test or presumed specialist no matter how sincerely stated, credentialed or number of years in this field...don't be surprised after such research you find that more than 9 out of 10 seemingly valid claims related to it were dead on arrival, simply never so."

    You've not done great research of Nicholson and his daughter's actual health status, you seem to not realize that Lerner's study has yet to be duplicated and validated by science, that the MP promised resounding numbers of ME/CFS cures as far back as 2004 yet notice what has actually resulted, that Kerr's et al gene studies don't confirm any cause and aren't relevant to my points here anyway, and you have little knowledge of Goldstein's methods and actual results. I could go on, but point being is your level of research into ME/CFS seems not as great as you seem to assume.

    My challenge to you stands.


    [This Message was Edited on 11/03/2008]
  15. mindblower

    mindblower New Member

    You're continue to miss my point and you're not as truthful about the level of research you suggest you've done, unintentional or not. You're out of it regarding Goldstein is one glaring example.

    Horrible. And you're continued suggestion that I don't value real progress(not just cures) and scientific research on theories, treatments and tests that have not yet shown themselves as useless is utter nonsense, no where have I said this.

    You resist the obvious too much my fellow PWMEer. There are things that warrant further investigation and many things in ME/CFS that have, indeed, shown themselves to be practical dead ends.

    [This Message was Edited on 11/03/2008]
  16. winsomme

    winsomme New Member

    Enterovirus infection of the stomach in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) - Source: Journal of Clinical Pathology, online Sep 14, 2007

    by Jonathan R Kerr, MD, PhD
    September 20, 2007

    Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is a disease characterized by severe and debilitating fatigue, sleep abnormalities, impaired memory and concentration, and musculoskeletal pain. In the Western world, the population prevalence is estimated to be of the order of 0.5%.
    Research studies have identified various features relevant to the pathogenesis of CFS/ME such as viral infection, immune abnormalities and immune activation, exposure to toxins, chemicals and pesticides, stress, hypotension, lymphocyte abnormalities and neuroendocrine dysfunction. However, the precise underlying disease mechanisms and means by which these abnormalities inter-relate in CFS/ME patients remain to be clarified.

    Various viruses have been shown to play a triggering or perpetuating role, or both, in this complex disease. Microbes which have been shown to trigger CFS/ME include enteroviruses, Epstein-Barr virus, Chlamydia pneumoniae, parvovirus B19, Coxiella burnetii, Borna disease virus, Varicella Zoster virus, cytomegalovirus, and human herpesvirus type 6 (HHV-6).

    Chronic microbial infections which have been documented in CFS/ME patients include Coxiella burnetii, parvovirus B19, Chlamydia pneumoniae, hepatitis C, enteroviruses and human retroviruses.

    Virus reactivations in CFS/ME include Varicella-Zoster virus, Herpes Simplex virus (HSV) (increased frequency of cold sores) and EBV.

    Source: Journal of Clinical Pathology. 2007 Sep 14; [E-publication ahead of print] PMID: 17873115, by Kerr JR. St. George's University of London, United Kingdom. [E-mail:]
  17. mindblower

    mindblower New Member

    You continue to misrepresent my stance and avoid that, yes, the level of research you suggest you've done is less than honest. And, again, you're not being as truthful as you pretend in your comments and continue to not recognize the obvious, which undercuts your credibility as someone even worth having this discussion with.

    I know a lot about this list of researcher's work and know that much of what most have done in scientific terms has essentially failed their predictions, with Kerr, specifically, failing to keep his bold promise 5 years back that he and his colleagues in this field would produce a cure for ME/CFS in no more than 2 years based on their findings. Of course value aside cure has been suggested and momentary failure is not a good basis for stopping an avenue of thought and research.

    Nevertheless, some thinking among these folk and many not listed are somewhere between probable to clear dead ends for ME/CFS. Like RNase L testing that I specifically implicate, their lack of practical utility has and will continue to become apparent as determined by paying patients, most importantly, as well as docs who do the right thing and stop having their ME/CFS cases pursue what isn't adding up. When a pattern of failure and evidence emerges showing lack of utility, this is all that practically needs to be known about a test, treatment and ME/CFS itself at any point in time in order to move on.

    It's time to move on.


  18. mindblower

    mindblower New Member

    Please skip my posts here or elsewhere where I do since they bother you so much. You persist with misrepresenting and distorting what I've said and made clear, not interest in correction.

    You make lots of stuff up and pose arguments against these creations, thus making the discussion about you despite gesturing otherwise. It's mostly all your world you agree and disagree with, though I sense I made my actual points with you somehow anyway.

    I know I got these points across here and I'm moving on.

    [This Message was Edited on 11/04/2008]
  19. winsomme

    winsomme New Member

    getting back to the Rnase L test question, I just wanted to point out that even though this debate that has gone off topic, it does relate to the reason why I understand some people want to have the test done.

    like another poster pointed out, it could help somebody decide whether or not to try some particular treatment. It's not a test i have had done...nor do i plan to, but i understand the rationale behind some people getting it.

    [This Message was Edited on 11/04/2008]
  20. winsomme

    winsomme New Member

    done a little editing here because we got way off topic and that is not fair to the original poster.

    the question is about the usefulness of the Rnase L test and i agree with ladybug in that there are places where this test can be helpful - especially if paying for the test is not a huge worry. if you are considering looking into one of the many antimicrobial treatment protocols out there for CFS.
    [This Message was Edited on 11/04/2008]

[ advertisement ]