Re: ME/CFS and the immune system

[Guest guest]

My understanding (and it is limited) is that peoples immune systems with CFS and

FM can be either one way or the other catching every bug infection etc to not

catching anything. I have a friend who has CFS and FM she is a peer educator she

told me this but she told me that it can change like you can go for years one

way catching everything to months or years the other way. I catch everything

(but usually infections I dont usually get the flu I usually get tonsillitus or

an ear infection) it is annoying. She says she is the other way around for her

she doesn't get anything and hasn't for years. I wish I could remember

everything she said. I will ask her again and see what she says. It doesn't mean

your partner doesn't have CFS its just different. I hope you can find some help

for her soon.

----- Original Message -----

From: dunkindogdo

I was wondering if anyone out there knows of an ME/CFS patient whose immune

system is in " overdrive " , rather than barely functioning?

Many of the research papers I've read regarding ME/CFS seem to suggest that it

has its roots in a suppressed immune system, with the effect that the sufferer

picks up more and more chronic infections that are never cleared by the body.

[Guest guest]

Hi ,

Me, me? me, raising my hand! I have an immune system that is in overdrive.

Before I got this disease, I worked in a hospital and I picked up the usual

colds , virus' etc. Ever since this disease hit, I can stand in a room full of

sick people and will not get sick. I still manage to travel by air, and dont get

sick, I am around my grandchildren, nothing. I have told my doctors about this

and they say this happens with some sorts of autoimmune conditions because the

immune system is so busy attacking itself? to be picking up other person's

germs. ? I dont know, kind of made sense?

I dont know for sure, but, I just wanted to let you know, you are the first

person that has ever mentioned this and your wife is not alone . All of my labs,

blood counts are perfect as well. I am not sure why you would want to waste the

money to travel to US as, there arent any cures here either, its quite

frustrating. You mentioned she is sensitive to fish oil and some organics? That

spikes my curiousity as well. I try to take B12, fish oils, CQ10 as suggested

byt the docs, but, I swear they make me feel worse! I thought it was my

imagination though? Could it be?

Thanks and if I learn anymore I will share.

[Guest guest]

> Evening all,

>

> I was wondering if anyone out there knows of an ME/CFS patient whose

> immune system is in " overdrive " , rather than barely functioning?

>

> Regards, .

Hi ,

I too rarely suffer infections or colds, never had swollen lymh nodes

(oh yeah, for a short time, behind my ears once before I retired). I

experience an up-regulated immune system. That's why the CFIDS

Association calls theirs the Chronic Fatigue and Immune DYSFUNCTION

Syndrome Association.

After supplements, especially electrolytes (magnesium/calcium/

potassium/sodium in several small doses every day, same as athletes),

the most helpful treatment for me is custom, prescribed herbs by a

knowledgeable herbalist with lots of different experiences. I remain

disabled, but, in several ways I never imagined might be related, I am

doing much much better for the first time in my whole life including

digestion and regular bowel movements. Also, after a year or so on

custom prescribed herbs, both my main doctors, who didn't know each

other at the time, told me, separately, my cognitive function was much

better.

I am often too tired to deal with herbs, suspect if I had help every

day to take herbs, many more improvements might be evident.

On the other hand, living alone gives me plenty of time to reflect on

my life, my mistakes, the mishaps and grievances and come to a new

attitude about my life. I think this time alone to reflect has also

helped me physically. Interestingly, I believe the herbs help me

unclutter my mind to deal with unpeeling my past and past attitudes

about my life.

Finding an experienced, knowledgeable herbalist is not easy. Mark Hall

wrote about recovering from CFS in his book, Dazed and Fatigued. He

spoke to our support group in 1999, said his recovery was partly due

to the help of an herbalist, but also due to some of the personal

transformations he discussed in his book. He also said he had tried an

herbalist whose treatment failed for him (cost $3000 back in the

'90s). His second foray into herbal treatment was the clincher and

lead to recovery for him. Mark Hall didn't talk about " a cure " so much

as his process of recovery.

One member of our group said about Mark Hall's presentation, to hear

what he had to say about recovery from CFS, they had to accept it was

ok for others to recover from CFS even though they, our group member,

may not recover. This person described this as a transformational

moment for its ability to shift ideas about recovery and long term

disability of CFS.

People with CFS/ME/FMS/OI are extremely stress sensitive. This leads

some doctors to conclude, unfairly, our conditions are psychological.

Wood studied the FMS brain alongside healthy brains on and off

various drugs. He concluded FMS brains can handle no stress whatsoever

without physical consequences. Activity is also a form of stress but

many FMS doctors recommend exercise. I think this is a bad idea. I

have FM, experience little pain due to doing very little, just what I

must do every day, the occasional shopping trip, occasional doctor

visits, nuking already cooked food rather than cooking. Avoiding wheat/

gluten and milk also help me avoid FMS pain (have a conclusive story

about this, just ask). But I eat butter and coconut oil with my food

like it's going out of style. I remain disabled, but I feel much much

better than when first diagnosed. Avoiding stress was key for me,

giving me space to heal in other ways as well as physically.

I believe it's possible to recover from CFS/ME/FMS/OI. But, I believe

recovery is a long and winding road rather than a straight line.

Hang in there, and, thank you for asking on behalf of your partner.

toni

[Guest guest]

That's my understanding too, . For the first year, I had a constant

viral illness. For 15 years I felt bad off and on but could be around

people with flu, colds,etc and never catch anything from them. I thought it

was because my immune system was " on " all the time and no virus could get

past it! Now I still don't catch those illnesses but almost everytime I go

out (I'm bedridden most of the time) I do get sick. Only it's *MY*

particular viral illness that I get over and over, one that makes me feel

suicidal. It can last up to a year. This has been going on for 4 years. Who

knows what's next?

Bethany

> My understanding (and it is limited) is that peoples immune systems with

> CFS and FM can be either one way or the other catching every bug

> infection etc to not catching anything. I have a friend who has CFS and

> FM she is a peer educator she told me this but she told me that it can

> change like you can go for years one way catching everything to months or

> years the other way. I catch everything (but usually infections I dont

> usually get the flu I usually get tonsillitus or an ear infection) it is

> annoying. She says she is the other way around for her she doesn't get

> anything and hasn't for years. I wish I could remember everything she

> said. I will ask her again and see what she says. It doesn't mean your

> partner doesn't have CFS its just different. I hope you can find some

> help for her soon.

>

[Guest guest]

I am the same. I never catch colds and if I did it would be the fastest

cold ever, sneeze, runny nose, sore throat, cough and the gone..

Years ago Kline publisher a paper on Cytokines saying we are

swimming in cytokines and as far as I know we still are.. They are like little

soldiers march around looking for what ever we have, well actually, they are

sent by the General because the generals alarm has gone off and they are

sent out.They are actually the critters that make us feel sick. I guess when

we catch a cold they are so happy to have something to do because hey

can't find what the Generals complaining about

C

In a message dated 9/17/2009 6:59:07 P.M. Pacific Daylight Time,

bethanywilson@... writes:

That's my understanding too, . For the first year, I had a constant

viral illness. For 15 years I felt bad off and on but could be around

people with flu, colds,etc and never catch anything from them. I thought

it

was because my immune system was " on " all the time and no virus could get

past it! Now I still don't catch those illnesses but almost every time I

go

out (I'm bedridden most of the time) I do get sick.

[Guest guest]

CFS is classified as an auto-immune disease. That means that the body is

attaching itself as in rheumatoid arthritis and MS. I am one of those

people who never catches a cold or flu. I sometimes think that my immune

system is in overdrive and that is why I am so exhausted.

It is a very complicated disease and different treatments, pills,

supplements work on 1 patient and not on another.

You just have to do lots of research on the web and figure out which areas

may apply to you and start trying different treatments. Eventually,

something will help.

Lois

> My understanding (and it is limited) is that peoples immune systems with CFS

> and FM can be either one way or the other catching every bug infection etc to

> not catching anything. I have a friend who has CFS and FM she is a peer

> educator she told me this but she told me that it can change like you can go

> for years one way catching everything to months or years the other way.

[Guest guest]

Wow, I'm really grateful for your post I have had several infections this year,

bacterial and viril and I used to now get sick at all! So, now I know to be

more careful and viligent to get the meds I need. Thank you.

>

> That's my understanding too, . For the first year, I had a constant

> viral illness. For 15 years I felt bad off and on but could be around

> people with flu, colds,etc and never catch anything from them. I thought it

> was because my immune system was " on " all the time and no virus could get

> past it! Now I still don't catch those illnesses but almost everytime I go

> out (I'm bedridden most of the time) I do get sick. Only it's *MY*

> particular viral illness that I get over and over, one that makes me feel

> suicidal. It can last up to a year. This has been going on for 4 years. Who

> knows what's next?

[Guest guest]

To start a new topic assuming your computer will recognise the email address in

the to line type cf and hopefully the rest will come up automatically

or type fully in the to line

CFAlliance <

If you want to reply to the same topic just click reply when the message is

highlighted

Hopefully that will help you then type a new subject in the subject line and go

for it

Hope you are Ok. Haven't tried savella but believ its an antidepressent

[Guest guest]

You shouldnt have to use the brackets if you mean where you put the words

" CFAlliance....etc..etc..The brackets are unnecessary...just put in as follows

where it says TO:

CFAlliance

that should get the job done!

Good luck!

>

> I always wonder how many people read these messages? Could someone

> answer? I can't start

> a conversation because my brackets don't work. Hmmmm...

> that's interesting. My

> brackets Did work in the text but not on the subject line.

> I'd like to learn how to use this forum.

>