catch nothing, catch all...what does our immune system tell us?

[alexa]

The last few days i have been sick "for real" runny nose, a fever that feels different, sore throught and a new sort of fatigue and brain fog. I feel sick the way I would feel if i was sick before i got CFS. i have not felt like this since i got cfs 2 years ago.
I am cuirous about this because i remmeber reading that our immunesystem was i an constant overdrive ( th2 dominance or th1 i can't recall) and when this overdrive slowed down then our bodies would tackle some of the infections it had collected during the years. i also remmember this as being a good thing. that people experice cycles of "catching nothing and then catching everything"

anyone know anything about this or have experienced a period of "real sickness" , has yous CFS improved after this or is it something negative?

greatful for any insights

 

[Sasha]

Hi alexa - what an interesting question!

I got sick 25 years ago with acute viral (flu-like) onset. I didn't properly recover and over the next couple of years, still unable to work more than an hour or two a day, would get proper colds including one with proper symptoms that actually made me feel better! Then I got another dose of something flu-like that put me in bed for several years. During that time I didn't get any cold symptoms at all - I seemed to catch nothing. I did have a constant sore throat, though.

I then gradually went into remission, was able to live independently again and then started catching everything. For the next several years, when I was working full-time, I got a new bug about every couple of weeks. After about 10 years of that I went to an immunologist who said that the fact that I was getting some viral symptoms (severe malaise requiring bed rest, sore throat, sore ears) but not a runny nose meant that this was an old viral infection reactivating over and over. Eventually these episodes got more severe and prolonged and joined up - now I have been housebound several years but now I catch everything (I've just had nine viral illnesses in nine weeks with runny noses so presumably new ones!).

Maybe this means I am on the mend! I hope so. But I haven't noticed any improvement between infections - but on the other hand there isn't any time between infections for me at the moment. One isn't over before the next one begins.

I'd be very interested to hear others' experiences with this.

 

[Francelle]

Very interesting perspective Alexa.

Im still at the point where I havent had a cold or the flu since getting this M.E/CFS/Fibro or whatever, in 2007. Longest time ever as usually I get at least one episode each year.

Funny thing though, when I went to see my M.E doctor last week he took my temperature and it was 37.8C (which is about 100F) not high but I had no clue that it was up even that much! Weird eh?

 

[Just-Me]

Hi Alexa,

Im not very good at learning all the latest research on ME/CFS, but I know from experience I have bouts of "real sickness" very often. Its like I have no immune system at all, I will get a virus or infection so easily. I often find that the "real sickness" feeling is very different from the ME/CFS sickness feeling. When I get an infection or virus it then flares up my ME/CFS and I find that they merge into one prolonged load of symptoms. I wish I had cycles of catching nothing. In my experience i'm getting worse after every infection, I feel like my body may get over that particular virus but some new symptom emerges because of this that I didnt have before. Thats just how it is for me though, im not saying you will feel like that.

Maybe what I have are latent infections re-emerging, If your body is tackling some of the collected infections that is good news, and a thinking point, interesting post. Sorry you're feeling unwell, but there's always the possibility you do have a virus or infection that is not related to your ME/CFS.

I hope you feel better soon
and interested to see others posts that know more than me about this topic
Just-Me

 

[August59]

I have not had a cold since 2005! I would normally have at least one per year mostly due to having 2 children in school. They still have their normal 2 or 3 per year, but I'm batting zero for the last 6 years. There has definitely been a shift in something! Thanks

 

[lucy]

No cold for 1.5 years (out of 2), it is in a way a bit funny - everybody gets the colds in spring and autumn, and I feel safe.

 

[ukxmrv]

Alexa, this question has been brought up on ME groups ever since they started.

I remember Dr Cheney saying early on that when we started reacting with virus symptoms then maybe we could be on the mend and coming out of the disease. At that time he didn't have lots of really long term patients to observe and it didn't work out that way.

I've had decades or years when I reacted and then I didn't react in a viral, cold etc way. All sorts of years or 5 or 10 of different symptoms (i.e. viral, food poisoning, nothing but my earliest ME ones and so-on).
However, there was never any overall improvement or any remission .

I think it may be Dr Huber or maybe Dr Klimas (??) who is doing a good days/bad days study. Maybe this will give us some data. I'd like to see immune parameters and viral/bacterial load measured to symptom like these.

 

[Snow Leopard]

Catching viruses/bacteria might be correlated with recovery in a roundabout way - those who are improving are more likely to spend time in public and therefore more likely to be exposed to whatever is doing the rounds.

 

[jessjb79]

I didn't have a cold/virus for 4 years after getting sick with cfs. This always struck me as so strange considering before cfs I caught everything. When H1N1 went through my office at work I had absolutely no fear because I knew I wouldn't catch it. Now suddenly, after 5 years (maybe more who can remember), I'm back to catching everything again. Had bronchitis, then strep, the sinus infections back to back to back. I've read that many others experience this kind of thing and it has to do with which arm of the immune system is activated or overactivated at which stage of our illness - t1 arm vs t2.

 

[Live And Let Die]

Yes, I have tried to explain this to someone, I can't remember who. . .

If I ever get a sinus infection or bad cold or whatever it's like I don't have CFS during those periods. I'm just run of the mill sick. It's really strange.

 

[Sasha]

Yes, I have tried to explain this to someone, I can't remember who. . .

If I ever get a sinus infection or bad cold or whatever it's like I don't have CFS during those periods. I'm just run of the mill sick. It's really strange.

During the first couple of years after I had the flu-like illness that started my ME, I started to feel more unwell than usual and then after a day or so my nose started streaming as in a proper cold and suddenly, I feel really, really well! As though someone had flicked a switch. It was bizarre. And when that cold was over I was back to my usual ME state. Just like you. I wish that still happened now! It would be good to get a bit of a respite.

That's interesting, jess, that it might be to do with which bit of the immune system is overactivated. If it really represents a different stage that would at least be hopeful, but maybe as ukxmrv says, it's not so much a stage on the way to something as just a stage in a fluctuating state.

 

[alexa]

yes from what i have read before this has to do with which arm of the immune system, i was hoping that since a common cold could indicate that my immunesystem had switched arms from the overdrive to the normal one. But maybe this just means that i am sick in several different ways, CFS and the way that everyone is.
I started rich protocoll some weeks ago, i was hoping that there was a connection, and that this was a postivie sign. like us all, I am really hoping for a positive sign.....

 

[Questus]

UKXMRV said

I remember Dr Cheney saying early on that when we started reacting with virus symptoms then maybe we could be on the mend and coming out of the disease. At that time he didn't have lots of really long term patients to observe and it didn't work out that way.

This caught my eye. Have had CFS for 25 years and Cheney said this to me when I was his patient. I never forgot it.

In my 25 years I've never had a remission or partial remission. In the last five years I've had less and less functionality, and yet I've only gotten flu and colds in the last five years. Sorry to say Dr. Cheney was wrong about this one.

He was absolutely right about so much that I'll not hold this false projection of one of his many theories against him.

 

[ukxmrv]

Exactly that Questus, at least all that time ago he was thinking about the potential pathways and was personally very kind to me (answering letters from abroad).

Interestingly, the TH1/TH2 tests I had have not shown much of a difference between my get everything/get nothing years but these were primative and we will probably have better markers now.

If we could do tests on people while they were in a stage and then compare them maybe we would have some answers.

Has anyone noticed increased allergic reactions or infections versus immune viral symptoms during different stages for example?

 

[Marg]

When I was in remisson I caught things.. had a lot of sinus infections. I crashed two years ago and have not been sick since I have been sick. I am doing better now so I know a cold would be a good thing. Everything is in full bloom and pollen everywhere here and not so much as a sneeze.

 

[maryb]

I catch nothing normally - last year had a full on viral attack (inner ear-in bed for a week) but within 4 months of this had come back to feeling 75% recovered, since having 4 amalgams removed Dec '10 gone back to 30/40% - had bad neuro/cognitive/pain symptoms but no colds/flu/infections since.

 

[*GG*]

The last few days i have been sick "for real" runny nose, a fever that feels different, sore throught and a new sort of fatigue and brain fog. I feel sick the way I would feel if i was sick before i got CFS. i have not felt like this since i got cfs 2 years ago.
I am cuirous about this because i remmeber reading that our immunesystem was i an constant overdrive ( th2 dominance or th1 i can't recall) and when this overdrive slowed down then our bodies would tackle some of the infections it had collected during the years. i also remmember this as being a good thing. that people experice cycles of "catching nothing and then catching everything"

anyone know anything about this or have experienced a period of "real sickness" , has yous CFS improved after this or is it something negative?

greatful for any insights

Love the sarcasm "for real" and "real sickness". Keep up the good work, you're giving me a good chuckle.

GG

PS I don't notice any rebound effect or what not, I usually just feel a little better after other illnesses, back to baseline.

 

[sensing progress]

Have gotten lots of colds since getting CFS but do not recall have a real knocked-on-my-ass flu in many many years like I used to get as a kid. Could be not exposed to it b/c of staying in more or could be changes in immune system function, not sure which.

 

[mellster]

No common cold since September 2009 (the first onset of CFS/FM after a "viral infection") - have been around plenty of germs since then. I used to catch 1-2 a year. My theory is that whatever triggers it (viral infection, vaccine) is throwing the immune system into overdrive, partially attacking its own body. I notice a chronic sinusitis and slight respiratory depression waxing and waning (no drip though). Cough has been absent for many more years now. Just started a specialized testing/treatment with Holtorf med group, let's see..

 

[Mya Symons]

Yes, I have tried to explain this to someone, I can't remember who. . .

If I ever get a sinus infection or bad cold or whatever it's like I don't have CFS during those periods. I'm just run of the mill sick. It's really strange.

I have had the same situation. If I get sick with something, the first couple days are hell, but then I feel better then I have for years. This is when I wonder if CFS or FMS is actually an autoimmune reaction to a virus that would otherwise be harmless or an autoimmune disease (immune system reacting innappropriately to the body itself). If the immune system is reacting to something real, like a flu virus, then it is too busy to keep reacting in ways it shouldn't be. I get a lot of sinus infections and urinary tract infections for which I end up taking antibiotics. It could be the anti-inflammatory properties of the antibiotics makeing me feel better during those times. However, when I can actually tell I have the flu, I still feel better after the first two days.