Discussion in 'Fibromyalgia Main Forum' started by AmyKaiser, Jul 8, 2003.
RnaseL and 2-5A Synthetase ..
i saw some posts on these ...can someone tell me what it/they are?!
Thse are the enzymatic pathways which are upregulated by predominantly viral infections, and which do not downregulate once a viral infection has ceased. It has been discovered that these can also be of abnormally low molecular weight, ie 37kd instead of the usual 80kd, and current research has found even lower weights. Some of the researchers involved are Robert Suhadolnik et al, Prof Kenny de Merleir, Paul Cheney, Dan Peterson.
The only drug shown to be of any effect against this, is Ampligen, which activates the naturally occurring enzyme 2-5a synthetase. When activated, this then activates another naturally occurring enzyme called ribonuclease-L. When this is activated, it destroys viral nucleic acids, leaving viruses harmless and unable to infect more cells. Ampligen's most important effect is its immune modulating effect rather than the anti viral effect.
Original Labs involved for testing of upregulated RNaseL
are R.E.D.D Labs in Belgium, but Immunosciences also do it in the states. Researchers suggested the name of m.e. (c.f.s.) to be changed to R.E.D.D which is RNaseL enzyme dysfunction disease (I think). The apparent clinical and scientific, difference between c.f.s. and fibromyalgia, is this upregulated, low molecular weight RNaseL (in fibro, it does not supposedly test positive)
It was subsequently shown that RNaseL can also be upregulated by the chemical benzene (petrol fumes) and I think by products from yeast infections, but I'm a bit hazy on that and would have to look up my papers.
This should keep u busy though, if u want to find out more.
Very interesting. I am just beginning to digest some of this new information. My current doctor isn't interested in these kinds of tests, so I'm reading and trying to find an additional doctor for the bacteria, viruses, hypercoagulation, etc.
Question. If its up -regulation of the viral pathways and not really viral infection, why do so many of us get help with transfer factor, or with anti-virals such as isoprinosine, or ribavirin, or especially kutapressin?
I've always been confused about all this. I suppose we are all different, too. Do you or anyone have any insight on this???
Myself, I am one of those people who get worse with the first flu in october, go down a chunk, then the next one takes me down further, the next one further and by mid-to late November I am down for the count, totally sick and miserable until the winter bug-ickies go away, bout April or really May. Except for pollen and a few MILD summer bugs I am really at my best (which is still not THAT good but it beats the way I feel in winter hands down) until the winter bugs come again. ANy one else like this and how are you treating this, understanding this???????Thanks a lot.
[This Message was Edited on 07/08/2003]
Hi - I confess to being no expert on the RNaseL thing, but my consultant here in the UK did try to get Ampligen for me last year, he being the only one here in the UK licensed to use this unlicensed drug, and I tried desperately to get to grips with the whys and the wherefors. I am severely affected by m.e.
The damage done by these pathways being upregulated and not being turned off again, is extremely complex, but ulitmately, it involves affecting whole body systems including ATP production, sleep, HGH, the liver etc and etc. Our immune systems are basically switched on the whole time, and since I finally got diagnosed with m.e. in 1994, I have not had one bout of flu, a cold, or anything to do with any infection whatsoever.
That sounds wonderful, but it is totally abnormal. I almost got a cold once, and my GP was ecstatic - it never developed though. When my family have coughs, colds etc, my permanently sore throat (which I've had since 1994) becomes more red and troublesome, but that's about it.
The primary effect of Ampligen is in modulating the immune system to effectively do its job, but will also act as an anti viral. There are other antivirals, including those u mentioned, and these can be effective against specific viruses - that is if one is infected with them in the first place. So if u test positive for any of the known viruses identified to preceed m.e., then u have a good weapon to fight any latent infection.
I test negative on PCR for all these known viruses - my m.e. was triggered by pneaumonia, so it is a bit of a needle in a haystack for me. I seem to fit in with the theory that it does not matter what the virus is that seemed to cause the m.e., but I have been left with the damage that has been done to my immune system as a result of it not switching itself off after the attack as it should normally behave.
Very complex I know, and here we all are, trying to understand it. My specialist has me on Low dose Naltrexone to see if that will modulate the immune system, but he is a great believer in Ampligen, and has had some success with using it here in the UK, a couple of outstanding successes, and a few non responders. Don't think there is anything out there to equal it at present, so have to keep trying other things.
Hope this is a help - it's all like thick mud to me at times.
With best wishes
and will you please keep us posted on your treatments and how you are doing? How is the low dose naltrexone?
Separate names with a comma.