Do Remissions Give Us Any Clue That This is Treatable?

[julius]

I have been wondering for a long time.

Do remissions, or even "good days", where you feel really good for a day or so at a time, suggest that the damage cause by CFS/HGRV is not permanent.

For instance, some have theorized that the disease may be caused by having viral DNA integrated into our own DNA, thus making the damage 'permanent'. But if this were the case, then would remissions and "good days" even be possible?

If there are any super science nerds out there (and I know there are ), maybe you could help me understand this a little better.

 

[Cloud]

I've used that very argument with myself and many doctors regarding prognosis for recovery. I'm far from being a science nerd, but i do believe that it's unlikely one could experience complete wellness, even for just a day, if there was irreversible damage. Great question Julius.

 

[alex3619]

Hi Julius, I have always taken very rare good days (including a two week period when I was almost symptom free, and several six hour periods when I was completely symptom free) as strong evidence for much of the damage being reversible. Until someone proves otherwise, I am treating this as a winnable fight. This does not mean cure, but postential complete remission for all of us. A cure will take more research down the track.

Bye
Alex

 

[ukxmrv]

I am XMRV+ and have never had a remission or any single day when I am at all well since the acute viral onset that started this for me.

That over 25+ years of being very sick. There are times of the day when I am a little better and there have been a handful of precious days when I felt a little better. Learning how I can extend this time without causing ill-effects would be great. Thinking about remissions or good days, doesn't give me more hope because so I don't have them and so little is known about XMRV just now.

I'm plugging away trying to fight single symptoms and to fight co-infections to try and improve my life. However, I need something more substantial based on the little success I have had so far.

XMRV+

 

[julius]

That's sad to hear ukxmrv. Fortunately you seem to be an exception, although that doesn't do anything to give you any hope.

 

[Boule de feu]

From what we have learned lately at the XMRV workshop, it is my understanding that the virus acts like the cold sore virus. It is not completely eliminated by the body defenses. For this reason, it often recurs.

You might have periods of what you think is remission, but it is probably your immune system that is working better. As long as your immune system can keep the virus at bay or that you don't catch anything else to trigger it, then you are fine.

Unfortunately, my immune system is too weak to fight. I am always very sick. I haven't had a good day since... I can't even remember.

Hopefully, you will be able to fight more and more. You might see some improvement if you keep doing what you are doing now. Whatever it is, it seems to work for you. Keep it up!

 

[leaves]

fwiw, i am xmrv + too, have had symptoms since birth and worse over time. HOWEVER, 3.5 years ago I had a remission for one week (after antibiotics and heaps of probiotics).

 

[helsbells]

I am XMRV+ and have never had a remission or any single day when I am at all well since the acute viral onset that started this for me.

That over 25+ years of being very sick. There are times of the day when I am a little better and there have been a handful of precious days when I felt a little better. Learning how I can extend this time without causing ill-effects would be great. Thinking about remissions or good days, doesn't give me more hope because so I don't have them and so little is known about XMRV just now.

I'm plugging away trying to fight single symptoms and to fight co-infections to try and improve my life. However, I need something more substantial based on the little success I have had so far.

XMRV+

On the extemely rare occasions I get colds the day before I have better sleep and very modest improvement for a few hours. The rest of the twenty years I am completely with ukxmrv on this. I have unustained short periods when I might feel marginally less cr** but that isn't the same thing, people used to say, Oh you have ME isn't that where you have good days and bad days to which I used to give the marginally less C answer to and reiterate I don't have good days. It always feels pretty relentless to me.

 

[julius]

Boule de feu,

I live in Ottawa for like ten years. How's it goin?

The cold sore analogy works for me. As long as there is a possiblilty that some treatment (ARV's perhaps) could keep the symptoms at bay. Of course it would be better if we could simply be 'cured' and be done with it, but that is pretty unrealistic.

I'm not in any sort of remission right now. Actually, the last month (after overdoing it at the cottage on Georgian Bay) has been one of the worst periods of my (now 37 year) illness. I've been slowly getting myself back up to baseline, which is normally about 40-50% functionality.

 

[julius]

helsbels, have you been tested?

leaves and ukxmrv, do your symptoms fluctuate at all? or is it exactly the same all the time?

 

[leaves]

they fluctuate somewhat, that is, new supplements can improve me for some time, but effects wears out. the trend is downwards though, I am sorry to say.

 

[Boule de feu]

Boule de feu,

I live in Ottawa for like ten years. How's it goin?

The cold sore analogy works for me. As long as there is a possiblilty that some treatment (ARV's perhaps) could keep the symptoms at bay. Of course it would be better if we could simply be 'cured' and be done with it, but that is pretty unrealistic.

I'm not in any sort of remission right now. Actually, the last month (after overdoing it at the cottage on Georgian Bay) has been one of the worst periods of my (now 37 year) illness. I've been slowly getting myself back up to baseline, which is normally about 40-50% functionality.

Georgian Bay! Wow! That's a nice place...
We have a cottage on the Quebec side (near Masham and Maniwaki). It is also very beautiful there. But not as beautiful as today... beurk! (lol) What a s... day!
I have given up on the cottage. This summer I was able to spend 5 days there (total!), and I was very sick for 3 days. It's not worth it.

What seems to be a virus struck me in November 2005 and I fell very sick. Could not get rid of it. The symptoms got worse and worse over the years with its peak in July 2006. Now, I am functioning at 35 - 40% (if you can still call that functioning!) and I get worse the minute I leave the house. It doesn't matter how much pain killers I take ahead of time, the pain is unbelievable afterwards (not during the activity).
I also have extreme nausea, headaches, sore throat, and earaches that will not go away. Low-grade fever and diarrhea (I believe it is related to the virus) now and then. Whatever is inside me loves me very much. I am so irresistible!

As far as I can remember, I have been sick with this. But it took the virus in November 2005 to trigger whatever it is that it is making me so sick.

 

[alex3619]

Hi everyone,

Let me be clear about the brief periods I had with remission: it always happened when I was on a serious test of either a new supplement, or repeatedly when I was on Immunocal. I have one suggestion for this: antioxidants.

bye
Alex

 

[julius]

Of interest, these are some of the results from the xmrv+ survey. With 36 people with xmrv who answered:

The longest period of remission I had was:

No remission
35.29%

More than 2 years
20.59%

6 months to a year
14.71%

Up to 6 months
11.76%

1-2 years
8.82%

Less than one month
8.82%


During remission, I recovered to this percentage of my pre-illness state of health:

80% recovery
37.93%

60% recovery
27.59%

I have not experienced any periods of remission
20.69%

100% recovery
6.90%

20% recovery
3.45%

40% recovery
3.45%

So, remission is possible for XMRV positive patients.

 

[helen41]

Julius

Thank-you for posting those results. Somehow I missed that info, but it's so encouraging. One out of five went into remission for more than two years and two out of five recovered 80% of their function while in remission. That gives me some hope to hang on to.

 

[julius]

And 7 out of 100 experienced, at least once, what they would consider 100% remission.

 

[Boule de feu]

And 7 out of 100 experienced, at least once, what they would consider 100% remission.

I don't want to be a party-pooper, here, but what if the 7% did not have CFS but something else... they thought they had it but it turned out that it was another fatiguing illness... ?

I haven't read Recovery From CFS - 50 Personal Stories by Alex Barton, so I haven't made up my mind, yet. I have ordered it. Maybe you should read it, too! I'll be happy to lend you my copy once I'm done with it. =-)

 

[julius]

I don't want to be a party-pooper, here, but what if the 7% did not have CFS but something else... they thought they had it but it turned out that it was another fatiguing illness... ?

They're all people who are POSITIVE for XMRV. So, in that sense, XMRV infected people with a fatiguing illness can experience remission.

 

[leaves]

thanks for the info Julius, I needed that today

 

[julius]

thanks for the info Julius, I needed that today

I think we all need it right now.