Discussion in 'XMRV Testing, Treatment and Transmission' started by Fejal, Sep 11, 2010.
You may be right or you may be wrong
Fejal. I am not convinced that XMRV is the cause. But I also think it is possible for someone to be infected with something and not by symptomatic, even though others are symptomatic. The fact that we don't know this for a fact about XMRV does not change this possibility. Another thing that concerns me is people will wait around for an XMRV cure to save them, and not continue fighting with the tools we have at hand. So I'm glad you brought this up.
Thanks everyone for a good discussion. I want to apologize for any ill will generated, it isn't intentional.
Shelley, Here's the reference for the CFS mortality figure. (Jason, L. 2006) Don't read it if you're not mood stable.
I'm in the skeptical camp regarding XMRV. I've read that it isn't just caused by XMRV but also Epstein Barr and now that other variant. However, I am interested to see what future research turns up but as far as personal exploration I can't do anything in that area so following it will be a passive exercise.
Andrew, that is exactly what I fear is happening-that the XMRV will cause people to place all of their eggs in that one basket and then if it falls through they will have no hope.
Regardless of our feelings, we're all in the same boat and my heart goes out to every one here. I do hope that we can get to the bottom of this plague rapidly.
Thanks for the kind posting. If XMRV and retroviruses don't work out I'll be gutted. Certainly won't give up and will continue trying everything that I can so. It's been over 25 years of trying things for me.
Wishing you well on your own battle with the "plague".
For a cure, actual removal of the DNA, you are mostly correct. However, there are two points:
1. Action of xmrv can be blocked once we understand what it is doing using targeted drugs.
2. XMRV in the DNA might be targeted with drugs that bind to it and prevent it from even activating.
Both of these strategies will take at least 5 years I think, but we do have drugs that block retrovirus replication (which stops the virus spreading in the body) and once we know some of the pathophysiology we can begin to reverse it. In the meantime we can block secondary damage using antioxidants.
We are not doomed if XMRV is the cause.
My knowledge of Marty's work comes mostly from personal communications over the last eleven years. I have no links. This is the same for a number of researchers I have been communicating with.
With respect, that claim is silly, and a little arrogant.
ukxmrv..its heartening to see someone who has had this for 25 yrs show such strength and determination
I, too, was impressed with Dr Martin Pall's theory and read both Dr Pall's book and Dr Bell's book. I found that my sensitivities (MCS-like symptoms), which were a big problem for me at the time, resolved. Some of my cognitive issues improved. I was still far from cured or in remission, but it was a big help with symptoms.
I, too, think that some ME/CFS patients may have problems with nitric oxide/peroxynitrite cycle as a consequence of an infection (likely HMRV) and that fixing that problem can improve symptoms to some degree.
For me, the root question is: why is my immune system a mess? At this point, the retrovirus theory fits my situation best, so it's my current working theory. That doesn't mean I don't still try to treat symptoms and opportunistic infections.
I have trouble buying HMRV as an opportunistic infection for a very simple reason. ME/CFS patients have many opportunistic infections, but none anywhere near the 80%ish rate we're seeing with HMRV. Something like 99% of the population has a latent HHV-6 infection, but even so, it's only been reactivated in a much smaller percentage of the ME/CFS population. Why would such a large percentage of ME/CFS patients have HMRVs if we don't have other opportunistic infections at similar rates? The rates of infection that we're seeing are much more like those seen when the infection is causal than when the infection is opportunistic. That is not proof of causality, but it is a strong enough probability that I'm comfortable using it as my working theory.
I am entirely in agreement with Ix on this. Even if only 30% (or whatever) of us have active EBV (or whatever) infections, why aren't they routinely testing for and treating it?
I think treatment for ME/CFS is going to be complicated. I doubt it's as simple as treating L-form bacteria, or a retrovirus, or a herpesvirus infection, or any other single pathogen or cycle blockade/disruption. More likely we will have to treat multiple culprits, even if a retrovirus is at the root. There's wisdom is dealing with the various bad guys as we find them, and since we don't have a good treatment for the retrovirus at this time, treating other things may help, but we probably have to deal with all of them to feel well.
I'm foggy today and I don't feel like I'm being very coherent, :Retro redface: so just ignore me if I'm not making sense.
I've been following this thread with clenched butt cheeks waiting for it to derail into angry name calling. It hasn't and I'm soooo impressed by everybody right now.
I thought you were very coherent, but maybe it's because we agree.
Oh, good, then my clenched teeth and bitten tongue haven't been in vain. Do you mind if I call you a few insulting names just to get it out of my system?
What gives me concern is the fact that 40%+ are testing negative on the VIPDx tests. (the culture test poll on this forum currently suggests ~60% were negative)
At the very least this suggests that there are likely to be multiple potential etiological factors.
As for the Marshall protocol, I'm not convinced that it is based on sound science.
Ive researched in the past the ways to get glutathione and didnt come across that taking C will increase it. Can you please provide a link for that??? or explain how C increases it?
Johnston, CS. Vitamin C elevates red blood cell glutathione in healthy adults;1993.
Wasn't it WPI that said they have found less than 10% of their PWC's to have any one of the traditional opportunistic infections (HHV5, 6, 7, EBV, etc) re-activated (sorry, can't qualify that)? Yet xmrv is >80%.....doesn't sound like just an opportunistic infection to me either.
Many of the good docs are focused on and treating the opportunistic infections. I spent all of 2009 treating CMV and made significant improvements as a result. I agree completely that chipping away at each infection and treating it's wake of destruction is a good idea. I have been treating these infections, working on methylation, and now need to focus more on improving mitochondrial health. Also, I agree that the NO/ONOO cycle problem is likely a major contributor to the symptoms. For me, Hydroxycobalamin is quite effective......clearing perpetual neurotoxins caused by a virus, assisting with Mitochondial health, improving the methylation cycle...or maybe all of the above?
I don't think there is a single "clinical course" with this disease or any studies showing that people infected with xmrv have a "classic viral sickness that rapidly deteriorates". Not all PWC's had an infectious onset anyhow. Many had stress, toxins, trauma, etc, as a trigger. I did not have an acute infectious onset with a rapidly deteriorating condition. Rather for me, it was stress together with the Hep B vaccine that triggered my illness. It makes sense to me that I have been xmrv+ (dormant) for many years prior to onset of illness that was eventually triggered by those factors that adversely affected my immune function. Basically, my immune system eventually lost the upper hand.
What was your vitamin D intake (food and supplments) and sun exposure when you started getting fatigue?
"Fatigue" has never been a significant symptom of mine...but I know your just referring to onset of ME/CFS, which for me was 17 years ago. Up to that time of onset, I had never taken VD supplementation, nor did my diet include foods with significant amounts of VD. But I have always got lots of sunshine. I was always very physical with outdoor activities my entire life prior to illness.
My VD labs were normal when done 2 years ago.....but, I have chosen to do some supplementation anyhow. I have taken 2,000mg VD per day for about 6 months now. The first month I could feel a mild improvement....then it leveled off.
Cloud then you don't seem to fit the CFS model for L form bacterial infection. Probably means you have an easier recovery because your immune system isn't as suppressed.
im kind of shocked that you just told someone who has had ME for 17 yrs that she'll have an easier recovery!
You may gain some more understanding if you research ME (im not talking about English ME) more. Some with ME (myself included) may not necessarily suffer from fatigue as much as the other main symptoms.. but the other symptoms of ME may hit us quite hard at times even before the fatigue (the fatigue often comes later). Fatigue is the symptom listed quite below many different symptoms on my ME list of symptoms affecting me.
i have neurological symptoms used to be the main thing which restricted me (thou it was tiredness and weakness and every other symptom first few years).. body tremors, spasms.. passouts. I'd go into severe tremors before i got tired. It wasnt as much the fatigue which used to stop me but major neurological symptoms. (fortunately currently i arent having severe neuro stuff)
shrugs.. i myself wouldnt say that someone who may have obvious neurological damage... may have an easier recovery!! i think the main immune system issue of ME, is yet to be found... whatever allows us to get that virus.
It appears i may of had something wrong with my immune system as i got severe Mono but then recovered.. 10 years before i got the viral symptoms of ME. (way way back when i was a wee child, i had a blood transfusion.. 9 years before i got the severe mono). i had two incidents during my childhood that showed something was wrong, thou i was very fit and healthy and had a lot of sun.. but i didnt get ME till i was 25/26 years old. My own case indicates that i seem to have carried that virus all those years.. maybe since i had the blood transfusion. I was the first in my family to get sick with this, so maybe they caught it from me from there (laying dorment in them too for a while)
If its just an opportistic infection.. why on earth is it strongly running in families (it runs on just one side of my family). That dont make sense.
Thank you.. that is interesting as Vitamin C does help me a wee bit at times. I do know i have an issue with glutathione (as undenatured whey also helps me a little).
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