RnaseL and Ampligen

Discussion in 'Fibromyalgia Main Forum' started by Slayadragon, Jan 25, 2007.

  1. Slayadragon

    Slayadragon New Member

    I keep hearing what seem to me contradictory beliefs about Rnase-L. I would like to figure it out once and for all.

    Hopefully, someone here can help me.

    If we're going to consider the possibile benefits of Ampligen, we _have_ to understand this.

    It also is important in general for us.

    Rnase-L, as you may or may not know, seeks out cells that have viruses in them. It then destroys the cells, killing the viruses inside as well as the killing the cells.

    Cell death is called "apoptosis."

    Here are my questions:

    1. I believe that Rnase-L is higher than normal in CFS patients. It is busy destroying more cells than Rnase-L is in a normal patient.

    Is that true?

    Test results show that this is happening with my own Rnase-L, and that cell death is thus high. (See my results at the bottom of this post.)

    2. It seems there are two schools of thought with regard to why Rnase-L is elevated in CFS patients.

    a) Rnase-L is broken and gone crazy. This means that the elevation is dysfunctional.

    b) Another part of the immune system (specifically, NK Cell activity) is broken and allowing a lot of viruses to go unchecked. The elevated Rnase-L is a measure of the body's determination to get rid of the viruses even if it has to kill a lot of cells in the process. This means the elevation is functional.

    Which one of these two seems to be correct?

    3. I am of the impression that Ampligen is designed to increase Rnase-L activity. This would result in more cell death.

    Is this accurate?

    4. The article bellow (Appendix 1) suggests that Ampligen is a bad drug because it increases Rnaase-L activity.

    This seems to correspond to the theory that Rnase-L is broken and has gone crazy.

    On the other hand, those who believe that Ampligen can be useful seem to think that sacrificing even _more_ cells for the sake of killing off the viruses inside them is worth it.

    Are these statements accurate?


    Thanks for your help!


    The following quote is from the letter the NCF wrote asking for the dismissal of Dr. DeMeirleir. It is detailed in swedeboy's thread on the matter:

    "The RNase-L is a molecule that, when it is activated, degrades single and
    double-stranded RNA that is both viral and cellular. It is vital to the apoptosis
    (programmed cell death) that is going on in ME/CFIDS. Usually, the RNase L
    molecule is carefully controlled by another molecule, the 37 KDalton, but this
    controlling molecule has been degraded and can no longer control this antiviral pathway. The results is the breaking apart (cleavage) or bending of some vital intracellular proteins. Indeed, the discoverer of this pathway's upregulation, Dr. Suhadolnik, once asked at an international conference on ME/CFIDS, why these patients with ME/CFIDS are still alive!

    "[Ed. Note: DeMeirleir also promotes the experimental drug, Ampligen in his book as he has for years..... It is known, from patents owned by the manufacturer of Ampligen, Hemispherx BioPharma, that Ampligen contributes to apoptosis (cell death) causing the road to malignancies to be far shorter. "


    My Test Results.

    1) Rnase-L activity is high. It is killing more cells than a normal person's would.

    My value is 40. The reference range is 1-10.

    2) Apoptosis is high. More cells are dying off than in a normal person's body.

    My value is 10.70%. Normal is 0-5%.

    3) Intereferon Alpha-Serum is high.

    This means that my body is sending out signals that there are a lot of viruses present and that the immune system should kill them.

    My value is 412.0. The reference range is <12.5.

    This implies that I have a lot more viruses than the average person (or at least that my Intereferon Alpha thinks I do).

    4) My Natural Killer Cell activation is low.

    Some would say the fact that this suggests that there are a lot of viruses that the Nk Cells should be but is not destroying.

    The body thus uses Rnase-L to sacrifice those cells so that the viruses in them will be destroyed, this theory goes.

    My value is 4. The reference range is 19-60.

    Considering that I seem to have a lot of viruses (based on the Alpha Intereferon value of 412), my NK Cells should be busy at work.

    This seems to mean that perhaps my Natural Killer Cell activity should be at the higher end of the scale (closer to 60 or maybe even above).
  2. swedeboy

    swedeboy Member

    Hey Lisa, Very good Post you have Here!

    I just referenced the Summer 2005 CFIDS Chronicle's article on RnaseL. And everything you state sounds good.

    About the NCF article on Dr. De Meirleir and Ampligen:
    Wow what if it is true and Ampligen only helps short term and then actually shortens the life of CFS people!

    I mean why should we raise our Rnase L Protein Ratios anymore than they already are? Shouldn't we try to raise NKC activity? and more importantly try to figure out what exactly is causing our Rnase L Protein ratios to be so high?

    And why doesn't the CFIDS Association of America take the same stance on Dr. De Meirleir and Ampligen as does the NCF?

    If what the NCF is true then is Dr. De Meirleir really more concerned with profits? Surely I hope he doesn't want to harm his patients. Is it just a matter of ignorance? There has to be another side of this story out there.

    Peace and Love, Sean
  3. woofmom

    woofmom New Member

    I still believe a lot of this stuff is caused by chemical exposure. It's everywhere>water, food, air. There is a huge difference in natural chemicals and man made ones.
  4. Catseye

    Catseye Member

    I don't think it does anything to Rnase-L other than squash it. Here's from an article about AIDS and ampligen:

    "Ampligen is a synthetic RNA molecule. Test tube studies showed that it stimulates the cellular immune system by encouraging interferon production and activating natural killer cells.

    Ampligen and AZT (zidovudine, Retrovir) are synergistic in test tube studies.

    The manufacturer reports that ampligen treatment in conjunction with AZT may switch immune responses from a Th2 type, characterised by humoral immune responses such as the production of antibodies, to a Th1 type, characterised by cell-mediated immune responses.

    Ampligen is manufactured by HemispheRx Biopharma under the tradename Atvogen. "

    The Rnase-L is of the th2 type so if this is switching from th2 to th1, then this is doing what Cheney says should be done to stop RNase-L from continuing it's destruction of messenager RNA - viral messenger RNA as well as our own messenger RNA which we need for protein synthesis. Th1 activation is supposed to stop RNase-L but it doesn't happen. And NK cells are part of th1. Here is from Cheney's protocol:

    "[The main problem in CFIDS is cellular metabolic dysfunction. The body's cells have been damaged and are not able to function normally. Every cell in the body is affected.

    [CFIDS is usually triggered by a virus, not necessarily the same virus in all cases. To fight viruses, the body increases production of an anti-viral enzyme called RNase-L. (Enzymes are proteins that make possible certain chemical reactions or enable the reactions to proceed faster; many essential processes cannot take place without specific enzymes.) All viruses stimulate RNase-L, but herpes viruses such as Epstein-Barr, cytomegalovirus and human herpes virus 6 (HHV-6) stimulate it most powerfully. [Epstein-Barr is the virus that causes mononucleosis. Cytomegalovirus is a very common type of herpes virus often found in CFIDS patients; it causes several kinds of usually minor infections and represents a health risk only to people with compromised immune systems.] RNase-L is a defense against organisms that invade cells, so intracellular bacteria like Mycoplasma incognitus and Chlamydia pneumoniae could also trigger it. This explains why CFIDS can begin differently in different patients.
    [RNase-L works by destroying RNA, primarily messenger RNA. RNA is genetic material similar to DNA. Messenger RNA goes into the cell nucleus and duplicates genetic information from the DNA in the chromosomes. Then it moves to other parts of the cell, where the genetic information directs the manufacture of the proteins the cell needs to function properly. A virus is nothing more than a piece of RNA with a protein coat; it has no life processes of its own. So when a virus invades the cell, it uses the cell's own mechanisms to manufacture more copies of the virus. By destroying the virus's RNA, RNase-L stops the virus from reproducing. But RNase-L also destroys human messenger RNA, and this disrupts protein synthesis in the cells. Because every physical process depends on the proper enzymes and other proteins, inability to synthesize proteins causes serious disruption of normal functioning. CFIDS patients become very sick because their cells can't function properly. It isn't the virus that makes them sick so much as it is their bodies fighting the virus.
    [An unusual form of RNase-L has been found in CFIDS patients. This is the low molecular weight (37 kilo Dalton) RNase-L. It can be six times as destructive as the typical RNase-L. The interference with cell functioning caused by this abnormal RNase-L explains why CFIDS patients are so sick.
    [If the virus-fighting system is working normally, the normal form of RNase-L prevents the virus from reproducing, the rest of the immune system goes to work and wipes out the virus, and then the entire immune system returns to normal levels, and the person recovers.
    [However, in CFIDS, the RNase-L shifts to the more destructive form, and instead of de-activating, it stays active much longer, causing serious cellular metabolic dysfunction, which ultimately affects the liver. The cells can no longer produce essential enzymes, and without them, the liver can't do its job of detoxifying the body. For more information on RNase-L, see "The Search for a Test," The CFIDS Chronicle, Winter, 2000, p. 5."

    But instead of Ampligen, I'd rather try the supplements that are supposed to do the same: switch from th2 overactivation to th1. These are:

    transfer factor
    beta 1,3 glucan
    deer antler velvet
    pine cone extract
    undenatured whey protein or anything that raises glutathione
    probiotics - w/ lacto plantarum, bifo longum, acidophilus
    vitamin E

    I've taken almost all of these but now I just do the NAC, vit E and probiotics everyday and sometimes the deer antler, IP6 and chlorella. I'm feeling much better but I have no way of knowing quantitatively if my th2 is switching to th1 because I've never had those type of in depth tests.

    After the interferon chemo hell with the hep c, I'll never use a drug that has even a remote connection to interferon again. That is pure torture. I hope the government is using it to find Bin Laden. Inject the right person and he'll sing, I promise.

    take care,

  5. Slayadragon

    Slayadragon New Member

    This is my current hypothesis about the whole thing:

    NK Cell activity is destroyed by some pathogen.

    (This is likely a "mystery virus" that has yet to be identified. The idea that it is HHV6 seems wrong, since many very sick people who have classic CFS symptoms and viral onset, and who seem to have high viral loads, do not seem to have HHV6.)

    As compensation, Rnase-L destroys a certain number of cells that are contaminated with viruses. Optimally, this would be enough of the viruses to keep the patient from dying (like they do with AIDS), but not so many that it causes long-term damage to the body.

    I personally have a good deal of faith that are bodies are a lot smarter than our minds when it comes to this sort of thing. People do not seem to know nearly enough about virology and how the immune system works. Thus, their efforts to alter parts of it in order to get some sort of short-term result may be misguided.

    It is one thing to eliminate sugar and thus yeast from the body in order to relieve its toxic burden. It's another to mess around with crucial immune system functions in order to pursue only one of many theories on how we can force the body to do a better job.

    It is my belief that our bodies are adapted to make the most of a wide variety of problems. If our problem is a viral infestation, it seems to me that our bodies likely know just how many viral-filled cells to kill in order to give us an optimal result that is balanced to keeping us alive (if not feeling particularly healthy) over the long-term and short-term.

    As a matter of principle, I am disinclined to mess with that unless I am absolutely sure that a particular part of the immune system is severely screwed up and not doing its job appropriately.

    People seem in disagreement about Rnase-L. Some say that it is doing fine at coping with a difficult situation on its own. Some say that it is okay, but could do even better with help. Still others say that it is screwed up by some pathogen.

    This is a wide diversity of opinions. Until consensus is reached, or until I am presented with some convincing evidence that something is wrong, I'm inclined to let it make its own decisions about what the optimal number of cells to kill is.

    Note that the antivirals that some of us are taking do nothing to alter immune system processes themselves. Rather, they merely try to kill off viruses that are causing problems. (While it is possible that some viruses may not be bad for people per se, it seems clear that many of them are extremely destructive and should be disposed of.)

    In a best case scenario, giving the natural immune system help in doing its job (without giving it instructions about what to do as Ampligen does) may help the natural immune system to get back on its feet again.

    A less good but still helpful outcome is that relieving the body of its heavy viral burden will make us feel better, especially if we continue to take smaller amounts in the future to keep the bugs from reinhabiting the body.

    Whether one believes in pure Darwinism or Intelligent Design, it seems clear to me that our bodies are pretty damned smart with regard to coping with adversity. The fact that we CFS patients are still alive despite the huge insults to our systems seems testament to that.

    By all means, I think my body can use some help from time to time. But attempting to alter it at a core level unless something is clearly broken is something else again.

    And even if something is clearly broken, I am disinclined to try to fix it either unless I am extremely confident that I know what I am doing.

    In my own case, it is clear that (for whatever reason) my NK Cell activity is very low. Obviously I would like to fix that, but how to do it directly is unclear.

    Relieving my immune system of some of its burden so that it can fix the problem itself (as it obviously has great motivation to do in order to keep me both alive and healthy) is a strategy that makes me feel much more comfortable.

    From a theoretical point of view, this is no different from using antibiotics to kill bacteria. It is interesting to observe that although the use of the antivirals (and especially Valcyte) seems to have been discovered by accident to potentially be useful in helping or "curing" CFS, penicillin was discovered in the same accidental way. The fact that researchers sometimes get really lucky does not always mean that the answers they find are not really good ones.

    Obviously direct intervention in processes has been helpful in areas where time is of the essence and substantial knowlededge about the disease has been acquired. AIDS, heart transplants, and cancer treatments come to mind as meeting these criteria. On the other hand, with CFS, neither of these criteria apply.

    Ampligen is not on my own agenda of things to try at this point, therefore.

    Continuing to give my body a "helping hand" with the AV's without presuming to alter its core processes seems by far my best bet at the time being. Experimenting too much with regard to altering it seems to me to show way too much hubris, considering how little we know about the topic at this point.

    Of course, I could be wrong. Other opinions would be most valued.

    And if people find questions about the theory of Rnase-L etc. that I have laid out above, by all means let me know!!!

    [This Message was Edited on 01/25/2007]
  6. Slayadragon

    Slayadragon New Member

    No, you're making perfect sense.

    I imagine that the main differentiator with regard to AIDS/HIV patients is not whether they use drugs but how they use drugs. I can't believe any are getting better without any drugs, considering how nobody seemed to recover before drugs were invented.

    Nonetheless, I imagine that there are different schools of thought with regard to using drugs. Using drugs judiciously to help the body get to the point where the natural immune system is doing most of the work is different than throwing huge amounts of drugs at people. That's akin to Guyer's method (give the body a helping hand with moderate use of the AV's) vs. Montoya's (kill off everything with huge amounts of drugs).

    It will be interesting as time goes on to see which method works better. Both certainly do get some patients to achieve full remission for at least the short-term, but which one has more staying power or success rate remains to be seen.

    I can say one thing though---the Famvir certainly is having a big effect on me! And I felt much better (compared to before I started it) after being on it for two months and then going down to a lower dose for a short period of time on a trip.

    My friend's mother---who was severely ill with CFS on a consistent basis for eight years but has been wholly well (10+) for more than two years since after taking a long course of Famvir under my doctor's direction---is giving me true hope. Second-hand reports are one thing, but personal observation and information gathering from someone you already know well is something else indeed.

    Which reminds me......as I said before, my friend's mom is in glowing health with the residual problems only of needing thyroid and adrenals supplements. Our doctor told her he thought this was a leftover virus and instructed her to take garlic. I will try to find out if it resolves. Anyway, he apparently thinks it can be useful for small problems. For CFS in general.....that's a bit tougher challenge than people tend to believe, I think.

    I wish I knew what kind of virus is disabling the NK Cells. My best guess is that it's an unidentified herpes virus, but I'm not sure. My intuition is that the PIV-5 thing is overhyped, though I could be wrong.

    It takes at least three weeks to get those ImmunoSciences test results back, and so I don't think it's worth doing until I feel stabilized. Anyway, I may be on the way to getting well, but I really don't think that after less than three months of a low-strength AV the problems are going to be fixed.

    The FFC's severely underestimate the amount of time these drugs need to be used to be effective. I don't know why. Maybe it's because some patients' insurance doesn't pay for them, and if they gave an $18,000 estimate a lot of people just would walk out? Or maybe they just don't know.....considering how many patients they have, they're kind of clueless. Being an innovator in any field takes a lot of a certain kind of brainpower, and hypothesis generating and theory development do not seem to be those doctors' strong suits.

    Anyway, I will get the ImmunoSciences test re-done eventually, but all in good time. One thing you've got to have if you're going to try to recover from this disease in this manner is patience. I've had CFS for a long enough time that I'm not in that much of a hurry....I just want this to work.
    [This Message was Edited on 01/26/2007]
  7. woofmom

    woofmom New Member

    When my son was 4 years old he developed swollen lymph nodes. All of them were swollen. The biopsy showed nothing. The doctors didn't know the cause. Turns out the place we previously lived was contaminated with trichloroethlyne and other chemicals. I was told that another child had the same thing happen. I had an almost constant kidney "infection" while living there. The cancer rate for persons living there is 50 times the national average. That's also when I started having "allergies". The lymph nodes in my neck also became swollen when I had aspartame poisoning in '04. They finally went down after about a year. These procedures, treatments, protocols, or whatever will do nothing for me. Chemical contamination can also cause swollen nodes. Chemical contamination can "mimick" ear, sinus and other infections. This is because they eventually attack the brain. This is from personal experience, not some theory proposed by a scientist or doctor or researcher.
  8. cherylsue

    cherylsue Member

    "In a best case scenario, giving the natural immune system help in doing its job (without giving it instructions about what to do as Ampligen does) may help the natural immune system to get back on its feet again."

    I agree with this statement. The Ampligen should only be used for the most severe, bedridden cases. I think strong antivirals can do long term damage as well if taken for long periods at a time. Be careful.

    Dr. Cheney believes CFS is triggered by heavy metal toxicity and a virus. Dr. DeMeirlier said, "One of the RNaseL fragments has a structure that is almost identical to a protein involved in the removal of heavy metals and toxic chemicals from cells. When this protein is blocked by the RNaseL fragments, the cells become more sensitive to mercury. Now a tiny amount of mercury that would normally kill 10 % of the cells can kill 50-100 % of the cells."

    There's more to this conundrum than just Ampligen.


  9. Slayadragon

    Slayadragon New Member

    My doctor did not even do viral titers before I started the Famvir.

    The last time I had any done was in 2004. I tested positive for HHV6, CMV and Epsein-Barr. The HHV6 was quite elevated--1:660. This is only half the average for Montoya's patients, but about twice the cut-off for that New York doctor who is following Montoya's protocol. (i can't recall her name offhand, unfortunately.)

    My doctor strongly believes that there are numerous herpes viruses that have yet to be discovered and that are of major importance with regard to making us sick. He currently believes that one of these viruses probably is causing the deactivation of the NK Cells (although he certainly is open to further evidence at this point).

    Therefore, measuring current levels of antibodies for these particular viruses is not a significant factor in terms of putting people on AV drugs. He instead is looking at the functionality of the entire immune system.

    Of course, if the drug fixes the immune system, the values of all the known Herpes viruses should decrease significantly or go down to very low levels. I imagine he will test them after I get much more well (or almost wholly well) to see what has happened to them.

    If the body is behaving functionally, those numbers should be low. However, the fact that they are low does not provide convincing evidence with regard to proving that the body is indeed functional.

    I realize that this is not the approach advocated by Dr. Montoya etc., at least not at this time. It makes a lot of sense to me, and he also claims that it has been successful thus far in his work.

  10. LonelyHearts

    LonelyHearts New Member

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