Do Remissions Give Us Any Clue That This is Treatable?

[helsbells]

helsbels, have you been tested?

Hey Julius :Retro smile:

I assume you mean for xmrv...I wasn't part of the UK blood draw so I am waiting for a more standardized test. I have some underlying pathology but there was absolutely an immunological cascade involved so I would be surprised if I didn't test positive, given what I have read and the pattern and nature of my own demise - I just think I may be at the extreme end.

 

[Boule de feu]

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

Oops! My mistake, then. Knowing this, your survey shows a very POSITIVE outcome! =-)
It is reassuring to know that so many are experiencing some type of improvement at one time or another during their illness.
So, when is it OUR turn?

 

[slayadragon]

Let's see if I can explain how the idea of "good days" is tied to mold avoidance. (And if I succeed, maybe somebody can go explain it to Nancy Klimas.)

"Good days" (at least for some ME/CFS sufferers) are tied to low levels of biotoxin exposures. "Bad days" are tied to high levels of biotoxin exposure.

Biotoxin exposures include toxic mold exposures (mostly inside buildings) and toxic cyanobacteria exposures (mostly outside buildings).

When people get a bigger than usual exposure, they experience a "flare." This may go on for anywhere for a few hours to several days (sometimes even longer).

If people manage to get especially free of this stuff for a while, they experience a "good day." This goes on until the next biotoxin re-exposure.

These things cause biotoxin exposures to be higher:

1) Being inside moldy buildings

2) Being exposed to possessions that have been contaminated by moldy buildings

3) Outside air has a lot of cyanobacteria in it. (This happens more often during certain seasons of the year - often fall - and on cloudy/stormy days.)


If people live in a house with a lot of mold in it, in a country with a lot of cyanobacteria outside, and not much sun, they're unlikely to have many good days. This often happens to people in England, for instance. (People from England tend to report remissions when they go on vacations to Greece, which is why Sarah Myhill advises patients "I'm afraid you'll have to go on holiday" to find out if they have mould problems in their homes.)

What "extreme mold avoidance" does is take advantage of those principles to make every day into a "good day." By not going in bad buildings, not being around moldy possessions, and not being in areas with a lot of cyanobacteria in the air, wellness can be maintained all the time.

This does not mean that mold/cyanobacteria is the cause! Whatever is making us so reactive to these substances that we have to avoid them is the cause.

I believe that the thing that is causing this reactivity is XMRV.

Erik Johnson is part of the original Incline Village cohort (the one used in the WPI XMRV study). He's the person who figured out how to make use of the good day/bad day concept to make every day a good day, and an increasing number of people with classic CC CFS have replicated his success.

So it seems that XMRV doesn't cause the symptoms directly. It sets up the condition for the mold/cyanobacteria to cause the symptoms.

(The herpes family viruses do seem to cause direct cognitive problems, I think. My cognition didn't return until I finished a course of Valcyte, for instance.)

Regarding antioxidants: the way that toxic mold exerts damage to the body is through oxidative stress. Thus, supplements that combat that oxidative stress may be effective at taking the edge off exposures. These can include Vitamin C, melatonin and pycnogenol, amongst others.

Best, Lisa

 

[Boule de feu]

These can include Vitamin C, melatonin and pycnogenol, amongst others.

Does vitamin C have to be in the form of a supplement? How much do we need to take?

Would tryptophan work as well (instead of melatonin)?

 

[slayadragon]

It takes a lot of Vitamin C to put a dent in even small amounts of biotoxin exposures for us, I'm afraid. IV form is best. Going up to bowel tolerance may have some positive effect. (For me, bowel tolerance is about 30 g per day. This suggests that my system is using up every bit of Vitamin C I give it, presumably in order to combat oxidative stress.)

Melatonin has a whole lot of literature that suggests that it is as superb as an antioxidant. However, high doses of it are required to make much of a dent too. The usual dose recommended for humans for sleep disorders is 3 mg. An equivalent to the amount that's given to the rats in the studies is more like 300 mg.

Pure Encapsulations (a high-quality brand sold through doctors) makes a melatonin in a 20 mg capsule, as a way to "protect cell health" by "scavenging free radicals." So it seems that at least some doctors are using melatonin for its antioxidant value, in doses that are closer to the ones shown to have protective effects in studies.

I've yet to take more than 10 mg a day of melatonin, but I'm thinking about experimenting with it for this purpose.

Again though, if people are getting a lot of biotoxin exposure, I don't think that these supplements are going to make any difference. It's only if people are right on the borderline that they may help.

Best, Lisa

 

[Cloud]

In my 17 years with this thing, I haven't ever had what could be called a real remission. I've had a 1/2 day here, or a full day there. Never more than 1 day at a time, and that was rare and usually drug induced and could be quickly ended by any amount of stress. Even though my windows of feeling good were brief, I still felt completely well......and therefore believe that it's possible for that to be permanent. Honestly, I suspect that I don't know for sure anymore what "completely well" is like. But so what as long as I can achieve a descent and acceptable quality of life.

Makes sense to me that increased xmrv replication = increased immune response = increased symptoms. Most pathogens cycle in and out of increased replication, and now we also know some of the things that will stimulate xmrv replication (ie.hormones). So, if fluctuations in replication explains symptom severity, it also explains remissions.

How's that for a wanna be scientist?

 

[Boule de feu]

In my 17 years with this thing, I haven't ever had what could be called a real remission. I have had a 1/2 day here, or a full day there. Never more than 1 day at a time, and that could be quickly ended by any amount of stress. Even though my windows of feeling fully well were only hours.....I still felt completely well......and therefore believe that it's possible.

Makes sense to me that increased xmrv replication = increased immune response = increased symptoms. Most pathogens cycle in and out of increased replication, and now we also know some of the things that will stimulate xmrv replication (ie.hormones). So, if fluctuations in replication explains symptom severity, it also explains remissions.

You mention an "increased immune response", but I thought it was the other way around.
I thought that the immune response was not working properly (some lymphocytes are not doing their job anymore or there is not enough to do the job or there is some kind of defect) and it is the toxins released by the culprit (virus?) that are making us sick (more toxins = increased symptoms). I probably have it backwards... or maybe both are possible?

 

[slayadragon]

Makes sense to me that increased xmrv replication = increased immune response = increased symptoms. Most pathogens cycle in and out of increased replication, and now we also know some of the things that will stimulate xmrv replication (ie.hormones).

And another thing that will stimulate XMRV replication (according to Dr. Cheney) is toxic mold.

 

[Boule de feu]

And another thing that will stimulate XMRV replication (according to Dr. Cheney) is toxic mold.

I am allergic to black mold. I had severe pneumonia from it.
I know lots of us suffer from it, too.

 

[Boule de feu]

When I first got sick, I had a low lymphocyte count. Is everyone the same or is it just coincidence?

And if so, is it why I can't get rid of a chronic sore throat?

 

[Wonko]

IMO no they dont as ,at least in my experience, a good day is not even close to what a normal would classify as a normal day - I wouldnt know about a very good day as I cant remember one of them - I wouldnt even classify my last remission (6 months 14 years ago) as being composed of very good days - I still had limits - higher and less defined (ie more wiggle room) than I would normally have - but a lot lower than the general populations

 

[alex3619]

Hi Just to show a possible connection with mold in my life, my occasional good days ended after I moved to a flat that had a leaky roof - all the carpet was moldy (cheap rental accomodation).

Bye
Alex

 

[Michael Dessin]

I have extremely severe neurological ME not another issue in the CFS spectrum. Ive recovered from 0% functional to 85% recovery, living a nearly normal life.

From my own experience of being unable to complete a thought or take in the environment around me because my brain was so devestated,

healing can take place from any level and no matter how long you have been sick, which has been 15 years for myself.

 

[Mithriel]

There is a lot of evidence that our mitochondria do not produce enough energy. If we keep the demand for energy down to what our mitochondria can provide we will manage. This is the theory behind pacing what we do. Stop every task as soon as we get the first sign we are doing too much. This will stop the secondary damage we accumulate.

Many people I have known with ME (before CFS was invented) have managed to carry on in employment as long as they rested at home. This is not a cure, simply managing the disease as you get in the likes of diabetes.

It is very apparent that remission is not cure. Many people talk about years being symptom free but then everything coming back with a vengeance. This happens with MS, too.

If we shore up our systems we can have a semblance of normal life but the disease carries on.

I remember years ago I gave a birthday party for my daughter. After cake and things, my mother took everyone off to the park and I collapsed, exhausted. My doctor had given me antioxidant pills to take so I thought now would be a good time.

My husband was busy in the garden and about half an hour later he apologised but said he needed my help. I got up, helped him, tidied up felt better than I had for years. I thought I was cured so I took the pills for the next few days, went out with the kids, had a great time. Four days later I collapsed, not able to walk, spent the next fortnight in bed.

More disastrously, I had to take my son to nursery which involved climbing a very steep hill. Over the months I got fitter and managed it easily. I felt much better and got carried away with myself. After a few months, my legs stopped working one day as I came home from the library with him. I pulled myself along using the railings and that was the last time I walked outside, over twenty years ago.

The underlying disease is with us forever, we can mask or contain symptoms, like taking painkillers or even retrovirals, but we only manage the disease.

Mithriel

 

[Snow Leopard]

Those who report serious remission, for example the ability to work full time and still have energy after work gives me hope.
The problem is that it is not all that common for those who have been ill for 5+ years. My condition started as a relapsing-remitting condition, only it stopped remitting after 2-3 years.

 

[Boule de feu]

I have extremely severe neurological ME not another issue in the CFS spectrum. Ive recovered from 0% functional to 85% recovery, living a nearly normal life.

From my own experience of being unable to complete a thought or take in the environment around me because my brain was so devestated,

healing can take place from any level and no matter how long you have been sick, which has been 15 years for myself.

It is with astonishment that I have read your story.
Just wanted to let you know that you helped many of us by sharing what you were going through. Thank you so much.

 

[slayadragon]

There is a lot of evidence that our mitochondria do not produce enough energy. If we keep the demand for energy down to what our mitochondria can provide we will manage. This is the theory behind pacing what we do. Stop every task as soon as we get the first sign we are doing too much. This will stop the secondary damage we accumulate.

The underlying disease is with us forever, we can mask or contain symptoms, like taking painkillers or even retrovirals, but we only manage the disease.

Mithriel

I disagree with the first part. If I'm avoiding biotoxins at a high enough level, I have unlimited amounts of energy. So do other people who have recovered through extreme biotoxin avoidance. That's how Erik Johnson (the Incline Village CFS prototype who was part of the WPI XMRV paper) got to the top of Mt. Whitney (14,000 feet altitude, 6000 feet elevation gain) every August for 10 years in a row.

Erik's been well since 1998 with no relapses. So the idea that everything always comes back with a vengeance is not the case.

We still would be sick with ME/CFS if we didn't avoid biotoxins, so we still have the illness. But the fact that the energy comes WHOLLY back - no pacing required! - means that the underlying mechanisms aren't broken. They're just being temporarily cancelled out by an overlaying force.

The brain function seems to be harder to come back online. It's taken me almost three years, a huge amount of detox and a year of Valcyte/Famvir to feel like I'm close to where I was pre-illness. But the fact that I've finally gotten there suggests that it's possible for at least some of us to get that back too.

I do agree that the underlying disease likely always will be with us. Very few diseases ever are totally eradicated. But managing it so that we can live a normal life - preferably without having to stay within an "energy envelope" - certainly is better than just being sick.

Best, Lisa

 

[Michael Dessin]

Good points Lisa...thank you for the comments Boule de feu.

For many of us including myself.... any type of remission or recovery seems so improbable until it happens.

The saying is if your recovered than you never had ME in the first place...people need not believe that crap as I once did as well.

I still dont know if its possible to cure this disease as so much is involved including genetic/DNA component and so much nervous and immune system dysfunction.

However it can be managed to a degree from my experience and some of the others Ive seen with recoveries to a certain extent.

The hard part is finding each persons way of managing this illness and it seems to be a little different for each individual...Healthy environment, detox and immune modulation

of some sort seem to be common themes of those who have recovered.

 

[Boule de feu]

The saying is if your recovered than you never had ME in the first place...

On this topic, some patients may think they have ME but they were misdiagnosed by doctors. So, it would give the impression that they did recover from ME but it is not the case.

See the following links on the subject:
http://www.name-us.org/MECFSExplainPages/MECFS Explained.htm#Dr._Hyde_has_described_patients
(See the part about Dr Byron Hyde)

http://www.meresearch.org.uk/research/projects/comparison.html

Even specialists don't agree and many of them can't diagnose it properly - I believe it was said during the XMRV workshop.
How many of us were not diagnosed properly?

 

[Michael Dessin]

Hey thanks for that info Boule de feu...Yea Im a big fan of Dr Hyde and his research...I think he describes ME as accurately as you can get without being an actual patient

Truth is ME is pretty simple to diagnose...its quite unmistakable from any other disease and good physicians can diagnose ME within a 15 minute conversation, before

labs are even done!

Also too, one note about remission...some patients sometimes can get remission confused with a period in which the immune system is extremely heightened, generally

around year 10 of the illness as there are phases of the disease process. During this phase patients have a sense of well being because the immune system is effectively

handling all the virus and toxins but this phase which usually lasts roughly 2 years is followed by the worst part of the illness, in which the immune system completely

collapses Generally remission without tx intervention is almost impossible at that point.