LDN & XMRV Antibodies

[Lynn]

You know how sometimes in Lyme disease they ask a patient to try an antibiotic therapy challenge and then get tested for Lyme? I assume they do this because the antibiotics stir things up (layman's term) and then the lyme disease is more easily detectable

I wonder if the same is true for LDN (low dose Naltrexone) and XMRV? I tried LDN for about 9 months last year. I started the LDN just before the WPI paper came out. I was never able to tolerate even the small doses. It dramatically impacted my symptoms in a negative way and reduced the quality of my life.

I hypothesized that LDN was helping my immune system fight XMRV (at the time I had not been tested but I now know that I am XMRV+). I do think that the LDN may have kick started my immune system which led to production of antibodies against XMRV. This then led to a worsening of symptoms due typical "sickness behavior" from the antibodies.

I'm wondering what others think? Could those of us not able to tolerate LDN assume it is because we have XMRV? As far as I can tell, patients with other illnesses do just fine on it.

Also, could it be a good idea to do a LDN challenge before getting a XMRV serology test to improve the odds that your body id fighting the infection?

Lynn

 

[Jemal]

I still have a hypothesis that many of our symptoms are not caused by XMRV per se, but by the immune system fighting it.
If XMRV has been able to spread to large parts of our bodies, it would almost resemble an autoimmune disease, as the immune system would launch attacks all over the place. We share many symptoms with autoimmune disorders, fatigue being a very important one (but also muscle pain for example).

Anyway, if you then activate the immune system any further, it would be logical that your symptoms worsen. This is also seen in autoimmune disorders, where you actually want to quiet down the immune system and not aggravate it further.

To me it looks like XMRV and our immune systems are engaged in some sort of deadlock. Neither can get the upper hand (or only very slowly) and we are the casualties of that war.

I think many men with CFS have low testosterone levels. For me this is also an indication that our immune system is using a lot of energy to fight a pathogen. There's some research that shows the body will create less testosterone as soon as a pathogen is detected. The energy saved by producing less testosterone is then allocated to the immune system. If the immune system continues fighting, I guess testosterone levels would eventually drop.

Another reason why I think our immune systems are on high alert: many of us don't catch things like the common cold anymore. I feel very ill, but I never get a cold anymore! Unfortunately it also looks like we are losing some parts of our immune system's function in the long run, meaning we are at a higher risk to get cancer for example. This could also explain why some people with CFS eventually catch every bug and bacteria they get in touch with. There's evidence we are losing Natural Killer cells, one the first lines of defence, crucial for preventing infections and cancers. Maybe the virus is hijacking or destroying those cells as HIV does with other cells crucial for the functioning of the immune system. Or the body just can't keep producing the energy required by the immune system.

Some doctors already suspected an overactive immune system in CFS, but they didn't understand why. This virus may be the key.
Getting rid of the virus would be the cure, but that's very difficult to achieve. Antivirals might work in the long run, because the virus ceases to replicate (or replicates slower) and infected cells get slowly replaced by new, uninfected cells. The immune system would then quiet down and the symptoms should then be fading as well.

Well, at least that's my theory

I would almost like to test some drugs that are immunosupressant, to see if the symptoms start to fade. Still, this might be a bad idea if the virus itself is also causing problems and then gets the upperhand... you don't take immunosupressants with a HIV-like virus I guess. So don't take this as advice...

 

[usedtobeperkytina]

Jemal, that's my theory also. But I would say immune system is causing symptoms not just from fighting XMRV, but herpes and other infections because NK cells are disabled.

So, I would think the key would be boosting NK Cell health and killing XMRV. Then the immune system will stop on its own.

Suppressing immune system may mean that the parts that need to fight infections are hindered.

I agree that it seems to me, way I have described, a Vietnam War. Neither the monster agent or immune system wins, but each occasionally gets the upper hand in a see-saw pattern.

Tina

 

[omerbasket]

I still have a hypothesis that many of our symptoms are not caused by XMRV per se, but by the immune system fighting it.

That's what I hypothesize too, by the way. What I think is that it might be possible that XMRV by itself does no harm - and perhaps that's why most of the people who are infected by it are healthy. However, due to some other thing that the sick ones had before they were sick, and the healthy ones don't have (it might be a genetic difference, perhaps another virus etc.) - our immune system sees XMRV as a theat (even though it's not, if going by this hypothesis) and attacks it. Now, let's say that we have XMRV in parts of the brain that controls refreshness, pain etc., and that the immune system attacks there. So there's inflammation there, and there are symptoms. So without XMRV, there would be no disease, but XMRV itself does not do anything - it's our body that classify it wrongly.
It might also open up a possibility for treatments for immune-suppressors. By the way - I have Crohn's disease, besides Fibromyalgia, and I have to say that I had experienced improvments in Fibromyalgia effects when I was being treated with Prednisone and when I was treated with Methotrexate - both suppress the immune system.

 

[Lynn]

Yes, I agree with all of you. The LDN must have awoke my immune system which is now once again battling the virus. I would like to put my immune system back to sleep. I had a much better quality of life while it was sleeping. Any ideas on how to do that?

Lynn

 

[Jemal]

I have no idea Lynn, sorry. Most of us have tried the opposite: strengthening the immune system. It generally doesn't do a lot of good I have noticed
Not sure if it's a good idea to suppress the immune system as it might make you very vulnerable to the virus or other infections.

 

[Sushi]

I wonder if the same is true for LDN (low dose Naltrexone) and XMRV? I tried LDN for about 9 months last year. I started the LDN just before the WPI paper came out. I was never able to tolerate even the small doses. It dramatically impacted my symptoms in a negative way and reduced the quality of my life.

I hypothesized that LDN was helping my immune system fight XMRV (at the time I had not been tested but I now know that I am XMRV+). I do think that the LDN may have kick started my immune system which led to production of antibodies against XMRV. This then led to a worsening of symptoms due typical "sickness behavior" from the antibodies.

I'm wondering what others think? Could those of us not able to tolerate LDN assume it is because we have XMRV? As far as I can tell, patients with other illnesses do just fine on it.

Also, could it be a good idea to do a LDN challenge before getting a XMRV serology test to improve the odds that your body id fighting the infection?

Lynn

Hi Lynn,

Interesting theories. Just an anecdotal report, but my friend Sergio and I have both taken LDN for 14 months, are both XMRV + by culture and expecting the serology results next week--this test could give us more data. We both tolerated and have benefited a lot from LDN (and were taking it at the time of the XMRV blood draw), but we did get enhanced (meaning not fun) immune responses every time we upped the dose. They lasted about a week. It seemed that our immune systems were going after things that they had been ignoring--XMRV?

Theoretically LDN should help the body fight XMRV as it both helps shift from Th2 dominance to Th1 dominance, increases natural killer cells, and a couple of other things relevant to XMRV. It will be interesting to get our anti-body results--wish we had them now!

Sushi

 

[free at last]

That's what I hypothesize too, by the way. What I think is that it might be possible that XMRV by itself does no harm - and perhaps that's why most of the people who are infected by it are healthy. However, due to some other thing that the sick ones had before they were sick, and the healthy ones don't have (it might be a genetic difference, perhaps another virus etc.) - our immune system sees XMRV as a theat (even though it's not, if going by this hypothesis) and attacks it. Now, let's say that we have XMRV in parts of the brain that controls refreshness, pain etc., and that the immune system attacks there. So there's inflammation there, and there are symptoms. So without XMRV, there would be no disease, but XMRV itself does not do anything - it's our body that classify it wrongly.
It might also open up a possibility for treatments for immune-suppressors. By the way - I have Crohn's disease, besides Fibromyalgia, and I have to say that I had experienced improvments in Fibromyalgia effects when I was being treated with Prednisone and when I was treated with Methotrexate - both suppress the immune system.

This is very interesting and makes a lor of sense. If someone is XMRV + for a number of years with no real health issues then catches a particulaly nasty fever producing virus. that re develops periodically ( could also be a re occuring bacterial infection, of a nasty kind ) then the immune system could go into hyperdrive. basically attacking everything it sees what was once a ignored XMRV infection could then become the focus of attention.

Also by the very act of being occupied trying to fight a retro virus that can not be beaten. one wonders if the other viruses or bacterial infections ( that may have started this whole scenario off ) can now spread more easily and more often, because the immune system is overwhelmed. And over taxed to the point where it just can not cope.

if you add poor sleep into this mix. then its clear whats going to happen. if one does not find a way to fight back, with better sleep. better nutrituon, better rest, further detioration will likely occur.
one thinks of poor lynn RIP, Maybe her vaccine was the catalyst for her ?

Maybe if the cycle can be broken, and carefull avoidence of catching new infections, with infection fighting protocols lile raw garlic and certain foods. ( or for others anti retros ) maybe the immune system can be given a chance to calm down again. and re learn to ignore XMRV the way it did before all this started.

of course if this is true, then all it could take is a bout of nasty viral attacks ( or bacterial ) to start the whole ball rolling again.

But maybe through fear, i unwittingly did ( and continue to do ) the very thing that has both helped recovery happen, and lessen the chance of relapses. Over the long term. (I avoid infecttions like no tomorrow )

wonder if excercise, can stimulate higher copies of XMRV in the blood that the immune system attacks. explainling why long periods of inactivety seem to lessen relaspes and the PEM problem. All guesswork. but i think the ideas your all discussing may fit nicely in many ways of my experiances. Im not sure though ? but it feels right. hmm ?

 

[Jemal]

Also by the very act of being occupied trying to fight a retro virus that can not be beaten. one wonders if the other viruses or bacterial infections ( that may have started this whole scenario off ) can now spread more easily and more often, because the immune system is overwhelmed. And over taxed to the point where it just can not cope.

This is another possibility I have considered. The immune system could be so busy, that sometimes other pathogens can get a foothold.

From the moment I got sick I have the feeling my immune system is waging a war against something. This could be it.
Now, I am not sure if I should be happy it's waging that war or not. Time will tell I guess... if XMRV does cause problems on it's own then it could be a good thing that the immune system is putting up a fight.

 

[Jemal]

And I was just reading some information about engogenous retroviruses (ERV's). Viruses that infected us in ancient times and our still part of our DNA.
They don't seem to be pathogenic, but they are suspected of playing a role in certain autoimmune diseases, where the body seems to detect these ERV's and starts attacking them like they were a fully functioning virus.

This could certainly be happening with XMRV as well. So even if researchers find out that XMRV does not cause problems itself, it could still be a nasty virus to get, because the immune system in some persons wants to get rid of it at all costs (and our immune system just doesn't know when to quit). This could also explain why many people with XMRV don't have any symptoms, their immune system just ignores the virus.

And I have been doing some more reading on HIV. Once a person is infected the immune system goes into overdrive mode. Which in the case of HIV is bad, because the virus infects certain cells of the immune system to be able to replicate. So the immune system quickly loses the ability to mount a good defense.
The immune system of our bodies could also be in overdrive mode I guess.

 

[Sushi]

Hi,

Just to add some data here, I have been taking LDN for over a year. I got my XMRV "positive by culture" a few weeks ago. Today I got the serology results: none detected.

So, according to the VIP test, either the immune system is not making anti-bodies, or, all the antibodies are "mated" with the retrovirus and not detectable in the blood.

Sushi

 

[Frank]

Sushi, is it me or does that seem strange?

 

[Sushi]

Sushi, is it me or does that seem strange?

Hi Frank,

I don't think this is strange--it is what I expected. A friend just got the same result. Dr. De Meirleir just told another patient who had the same result that this was what he was seeing--don't quote that, I don't have the reference at hand, but the post was in the last 10 days or so. I think he said something like XMRV attacks the B lyphocytes--and those are the guys that produce the anti-bodies.

Best wishes,
Sushi

 

[Jemal]

I think he said something like XMRV attacks the B lyphocytes--and those are the guys that produce the anti-bodies.

That makes sense:

We propose that activation of lymphocytes through the innate immune system represents a common mechanism used by mammalian retroviruses.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC122356/

They researched several murine (!) retroviruses, which used B cells to spread further.

 

[Alexia]

Frank,

I also found that strange but apparently it is not that strange. It has been discussed here http://www.forums.aboutmecfs.org/sh...Serology-Negative&highlight=serology+negative

 

[Lynn]

Hi Sushi,

It is so interesting to me that your results with LDN were opposite of mine and that you also tested negative for the serology test but were positive for culture. So you have XMRV, but are not making antibodies against it. I wonder if this is a clue as to why you are able to handle the LDN and I cannot?

Lynn

 

[Sushi]

Hi Sushi,

It is so interesting to me that your results with LDN were opposite of mine and that you also tested negative for the serology test but were positive for culture. So you have XMRV, but are not making antibodies against it. I wonder if this is a clue as to why you are able to handle the LDN and I cannot?

Lynn

Yes, this is interesting and I wish we knew more. I also think the negative anti-body test can also mean that whatever anti-bodies you are making are "bonded" to the virus (sorry, not sure how to express this scientifically) and are not in the blood stream.

As more test results come in, it will be interesting to tease this out more. Another friend who responded well to LDN got the same results as I did.

Maybe the anti-bodies in your blood do make LDN harder to tolerate. Although I also know someone who got my XMRV results but could NOT tolerate LDN!

Hmmm!

Sushi