Do Remissions Give Us Any Clue That This is Treatable?

[slayadragon]

Yea no kidding!!

It seems ME can take similar patterns of other disease such as MS in that it can be mild, remittent, progressive and so on at any point?

Im actually having my first bad day in a while, having difficulty thinking and writing without mixing letters around, still frustrated!!

Also, even with recovery its with a grain of salt, knowing so many people you know and care for are still very ill

What EXACTLY did you do yesterday, Mike? Try thinking through it, step by step.

You didn't open Pandora's Box, did you?

Best, Lisa

 

[slayadragon]

I've been going downhill for the last 5 years (years 23 - 28) since a ski-ing accident. But I had an eight month period in 2009 when I was 95 % again. Been at my worst for the last year though and mostly bed-ridden.

After being ill for 4 years in 1986 I was told I would never recover and never be able to work again. But I coped with bringing up two children as a single parent and got back to full time work in 1990.

I know several people in my ME support group who've got 95% well after 12 - 17 years of illness. I think there are very few clear patterns - there is always hope of remission (but sadly always the possibility of another relapse).

Jenny

Jenny, do you think that those people in your support group might be willing to talk to me about their stories?

I'm trying to do as many interviews with recovered people as I can. There aren't too many of us. (Rich van K and Mike have been terrific at helping me.)

What I'm doing is writing up each case into a little story (5-10 pages long). Then I'm going to look through all the cases and see if I can find any conclusions that can be drawn in terms of whether there are commonalities in people's stories that will allow other people to get better.

I'm planning just to distribute this to doctors and to make it available for free to patients who request it. Participants can use their real names or pseudonyms. They will have every opportunity to approve the write-ups of their stories and to make comments on my own comments.

Would you be willing to help as a liaison to help me to get in touch with these people?

Thanks much for your consideration.

Best, Lisa

 

[Michael Dessin]

Lisa....I dont know, didnt do anything out of the ordinary!

Usually in the mornings my brain takes an hour or two to warm up per say, but yesterday I just never broke through that and felt like I just woke up all day

Justy...I always had lung infections too...than those went away and I had several years of waking up with sore throats and night sweats than that went away.

Than I went through a period of calm where I thought I was normal again, well except for post exertional mallaise, that has always been a constant.

After the period of calm I than developed neurolgical issues around the 11-12 year mark. So there does seem to be phases but I feel like people

can stay in certain phases for different lengths of time.

 

[slayadragon]

Hi, I have been following this thread with a lot of interest. I was first ill with undiagnosed M.E about 14 years ago. I would say i was moderatley affected for about 2 years. This started with a lot of lung infections and having lived in a lot of substandard accomodation for years, 2 of which where very mouldy, and with no heating systems. I spontaneously recovered after about 2 years.

I was one of those people at the time who thought it must have been just a depressive illness as i had been told by Doctors. I gradually improved until i though i was 100% recovered. I continued to believe that M.E was a psychosomatic illness (yes i am ashamed of this, but i qwant to be honest)
I then became really ill again 2 years ago after my kids all had Measles. I strted getting really nasty lung infections and had Pneuomonia and pleurisy on and off for a year, wityh massive doses of antibiotics and steroids. I ended up in the moderate to severe category and more or less housebound most of the time. I got diagnosed this year and have made some small improvements. IU can go out a couple of times a week with someone and i can be up most of the day, just pottering etc.

I now realise that i wasnt completely recovered in between. i was living a more or less normal life, but couldnt work and look after the kids like many women do. I was always going to the doctor and begging them to find out what was wrong with me - i could function but was seriously below par and couldnt take on too much.

I'M not really sure whaty i am trying to say, its a bit garbled. BVut i think that remmission is possible, but as i have become so sick again i am not sure if complete recovery is possible, or if i wil always be ill to some degree. I have pretty much spent most of my adult life waiting to be well enough to do what i see others doing, but now have to accept that i may never be able to.

Until i joined this forum i had no idea that people could have remmissions and relapses. For me, my immune system has now gone pretty quiet, i am not sure if i am more worried by this than when i was too terriffied to meet anyone incase i got ill from them. Its a relief to be able to breathe and not be in bed all the time with viruses, bit its weird that i no longer seem to catch anything!

For the record, i don't think M.E is a psychological disorder anymore -i see i was in denial before about the true nature of my illness. In my defence i have spent 14 years without a diagnosis and being treated like a nutcase by the medical proffession -good old NHS!

Yeah, I think that no matter how much we recover, we're always going to have to think of XMRV (or whatever the core thing is that's wrong with us) as a smouldering infection right below the surface.

We may get it under control enough to go back to leading a perfectly normal life. But there's always the chance that it will blaze back into full glory again. Hopefully the more it gets damped down, the less likely it will be to happen. But if you dump a gallon of gasoline and there's even a trace of ember glowing, the whole thing may roar back at full strength.

So the first thing seems to me to damp down the fire as much as we can. Remove current stress factors - inflammatory environmental exposures (mold, cyanobacteria, possibly wheat) and address various pathogens. Detox seems to be relevant to this, though I'm not sure what the mechanism is. Get glutathione systems running again.

And then be careful not to do anything will dump gasoline back on it. Being in proximity to any sort of infection (like the measles) seems bad. But from everything I've heard (e.g. from Dr. Mikovits, Dr. Cheney, Dr. Shoemaker), steroids seem like they may be the straw that breaks the camel's back. And moving to a really moldy building seems to me like it can do just about anybody with this disease in, no matter how well they seem to be doing.

Figuring out what those other make-or-break factors are would be really useful, I think.

Best, Lisa

 

[Boule de feu]

Lisa....I dont know, didnt do anything out of the ordinary!

Usually in the mornings my brain takes an hour or two to warm up per say, but yesterday I just never broke through that and felt like I just woke up all day

Justy...I always had lung infections too...than those went away and I had several years of waking up with sore throats and night sweats than that went away.

Than I went through a period of calm where I thought I was normal again, well except for post exertional mallaise, that has always been a constant.

After the period of calm I than developed neurolgical issues around the 11-12 year mark. So there does seem to be phases but I feel like people

can stay in certain phases for different lengths of time.

Could you add which year you had each episode? (I'm sorry if it is too much to ask... just let me know if it is...)
I would like to find out when and how long you had the lungs infections, the sore throats, etc.
What you are describing is EXACTLY what I have been going through. I would like to compare and see where I am at right now.

There is something inside me telling me that the worse is too come. Maybe it's because I feel so fragile right now... can't seem to recup.
Have you ever had that nasty feeling that you were not out of the woods?

 

[Angela Kennedy]

I think one of the big problems - especially for 'science' here - would be to define 'remission'. Posters have already demonstrated that this might be impossible to definitively elucidate.

 

[Boule de feu]

I think one of the big problems - especially for 'science' here - would be to define 'remission'. Posters have already demonstrated that this might be impossible to definitively elucidate.

For cancer, it is a bit easier. They can figure it out by looking at the blood.
However, my dad was declared "in remission" but then found out that the cancer had struck again.
So, nothing is perfect in this world. Not even for cancer.

 

[Michael Dessin]

I think with our disease remission just as cure is almost impossible to declare since there is no one test saying we have reached that point.

However recovery can be described through diminished symptoms and increased activity level. So recovery might be the better title of the thread

than remission, whether spontaneous or tx induced?

Well, Ive had lung infections and asthma my entire life seemingly, leading up to my initial infection with this disease I had the lung infections more

frequently. After a few years of the initial ME infection I developed night sweats and morning sore throats, felt like I had a mild flu throughout the entire

illness. Honestly, I can say Ive had about 50 odd ball symptoms the entire time though, with a sharp increase in anxiety from day 1 as well as PEM

from day one of the initial infection at 20.

BDF--intersting when you talk about that nasty feeling of not being out of the woods....Ive had that feeling ever since day 1, like I have something terrible

and I will eventually die from it, even when I wasnt that ill. Luckily I didnt die but was damn close and lucky to be alive. I dont feel like you should think

your going to get extremely ill, rather just know now you have the proper support to prevent that from happening

Mike--ps dont know why my posts look uneven with the lines....sorry so retarded!

 

[Jenny]

OK Lisa I'll try to find some recoverers that you can talk to.

Jenny

 

[slayadragon]

Lisa....I dont know, didnt do anything out of the ordinary!

Usually in the mornings my brain takes an hour or two to warm up per say, but yesterday I just never broke through that and felt like I just woke up all day

Yeah, I have a lot of days that I'm not sure what happened to me too. Things can be going fine, and then they will feel off.

I really think those blips are almost always environmentally triggered rather than just random "flares." My system seems to hold up to stressful situations pretty well now. And I don't think it has any problem dealing with new exposures to pathogens either. (If anything, it's too good at that. I still haven't gotten a cold.)

I think it's that my body is still hypersensitive to all kinds of environmental stimuli. But figuring out what those things are is a puzzle.

That's especially the case since if I have one environmental stressor (e.g. mild mold exposure OR alcohol), it may be no big deal. But if I have two (mild mold exposure + alcohol), all hell may break loose.

I spend a lot of time figuring out what those triggers might be, so I can either eliminate or manage them. I don't want to live my whole life without ever having a drink again. But I want to do it under the right conditions, so I don't get punished as a result.

The experience I had recently drinking tap water (made into tea at a restaurant) and getting a CFS flare from it (apparently as a result of cyanobacteria contamination) was huge for me. I now think that I may be affected to a smaller extent by a fair percentage of tap water, at least in certain places, and that this has driven me down in general. Drinking bottled water all the time is an easy enough change to make, rather than playing Russian roulette with the public water supply.

My food sensitivities went away with mold avoidance, but I've been experimenting with eliminating wheat. If that gives my system more resilience against mold exposures, that would give me a lot more flexibility.

If I push detox, everything has more of an effect on me.

Yesterday I took some oregano oil, which seems too wimpy to have much of an effect. I woke up feeling like crap today. So I guess that the idea that if I'm well enough on the surface, for long enough, all the pathogens will go away on their own doesn't hold up.

If I can get to the Chicago Botanic Garden (the place nearby where the air is best) for a while each day, my system has much more resilience against everything. It's not just avoiding bad air, it's getting super-good air on occasion, that can make a real difference.

The thing I don't like about the word "Remission" is that it makes it sound so EASY. My own health gains have not been easy at all. I've had to think about and manage what's going on all the time, without ever letting up. It's gotten somewhat less difficult as my system has gotten stronger, but I don't think it ever will be easy.

It's discouraging and a little scary to feel worse on some days. But I'm encouraged by the fact that on average, the good days keep getting better and that the percentage of good days keeps getting higher. And even the worst days now are much better than the best ones were, back when I was really sick.

Being careful with big changes or stressors seems key. I think our bodies can recover from little stressors. But big stressors (especially of the sort that our ancestors didn't have to deal with) may be another thing. It's hard to imagine myself getting another vaccine for any reason. And of course, moving to a bad building never will be something I'll be able to do.

Best, Lisa

 

[slayadragon]

OK Lisa I'll try to find some recoverers that you can talk to.

Jenny

That would be fantastic! Thanks!

 

[MDL]

I thought that was why HydroxyB12 helps me so much....clears toxins from my CNS.

Hi Cloud-
Hydroxocobalamin (B-12a) has been shown to prevent H2S-induced lethality and cytotoxicity in mice. I imagine it might be doing something similar in your body.
MDL

 

[Michael Dessin]

Yea Lisa, I think the big thing for me as Ive gotten better I push myself a little too hard sometimes...mentally and physically and they

both take a similar toll on me. Also I drink once a week as I can tolerate it now, when I go out with friends on Saturdays.

Even though I dont feel ill when I drink as before, Im sure it still has effects on my body several days later and makes me sluggish.

I dont eat organic anymore and wonder if that effects me in a negative manner. It just sucks, I feel as though I need to live an

absolutley perfect lifestyle to stay up at the 90% function level and if not, my health starts dipping down again

 

[Cloud]

Hi Cloud-
Hydroxocobalamin (B-12a) has been shown to prevent H2S-induced lethality and cytotoxicity in mice. I imagine it might be doing something similar in your body.
MDL

Thanks MDL, this is very interesting.