RE: Question for Everyone

[Guest guest]

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

From: CFAlliance [mailto:CFAlliance ]On

Behalf Of girlmomx4@...

Despite the fact that I daily have the severe fatigue, chronic pain and

muscle weakness that makes one feel like they have a " never-ending flu " ...I

never get much of a cold or stomach flu or anything.

I'm curious if anyone else has noticed this?

I do still get the odd cold (am suffering from one right now!) but much much

less than I used to when I was " well " . I would get a cold about 5-6 times a

year, now it happens as little as once a year. Someone else mentioned

getting cold-like symptoms that come to nothing. This happens to me all the

time and I've just assumed it's a sign I'm more run down than usual (and

probably been overdoing it or not getting enough sleep).

Alison

[Guest guest]

Hi Kate:

I get chronic sunis infections, and usually catch most colds.

Jeanette French

Question for Everyone

Hi and Everyone...

Maybe we should make a poll to ask this question, but for now I will just ask

it here.

commented on not getting colds.

I've noticed that too. Since my chronic fatigue and/or other autoimmune

issues that I have been dealing with for the past 6 years...I have noticed that

while my family will get sick with colds, viruses, flus, etc. - I will start to

get them (like a little bit of sore scratchy throat) and then they never turn

into anything much after that.

[Guest guest]

I seem to catch everything

Jeanette French

Re: Question for Everyone

>

> Despite the fact that I daily have the severe fatigue, chronic pain and

> muscle weakness that makes one feel like they have a " never-ending

> flu " ...I never get much of a cold or stomach flu or anything.

> I'm curious if anyone else has noticed this?

> Kate

[Guest guest]

Logically, it seems if our immune systems are in jeopardy, we should catch

EVERYTHING, but I don't get colds or stomach flu's anymore either. I attributed

that to my decrease in public contact. I don't go out as much as I did before

and even if my family gets something, they pretty much take care of themselves

since I am unable to.

sally hansen wrote: Hi All

M.E is an autoimmune disease that puts our immune system in overdrive that is

why don't catch anything. Besides we are always ill so who would notice.

Sal

[Guest guest]

Hi all:

I think I may have posted before on this, not sure, but I do get sick allot with

sinus infection, which I understand is a problem with CFS. I had a bad flu this

year, no shot, was to late on it, so I do get sick, more than most actually.

Maybe I am an exception, have always been that way, before getting ill.

Thanks

Jeanette French

Re: Question for Everyone

Logically, it seems if our immune systems are in jeopardy, we should catch

EVERYTHING, but I don't get colds or stomach flu's anymore either. I attributed

that to my decrease in public contact. I don't go out as much as I did before

and even if my family gets something, they pretty much take care of themselves

since I am unable to.

[Guest guest]

In a message dated 3/27/2006 10:27:10 P.M. Eastern Standard Time,

alison@... writes:

Despite the fact that I daily have the severe fatigue, chronic pain and

muscle weakness that makes one feel like they have a " never-ending flu " ...I

never get much of a cold or stomach flu or anything.

I'm curious if anyone else has noticed this?

I struggle with never ending flu symptoms constantly it seems. I spend a lot

of time in Dr. offices for illnesses. I didn't deal with before Chronic

Fatigue and Fibro. I just thought it came with the illnesses.

Roxanne

[Guest guest]

I haven't really had a cold since I got Chronic Fatigue Syndrome in 1988 - I get

various respiratory infections but not the common cold - and not really the flu

either

girlmomx4@... wrote:

Hi and Everyone...

Maybe we should make a poll to ask this question, but for now I will just ask it

here.

commented on not getting colds.

I've noticed that too. Since my chronic fatigue and/or other autoimmune issues

that I have been dealing with for the past 6 years...I have noticed that while

my family will get sick with colds, viruses, flus, etc. - I will start to get

them (like a little bit of sore scratchy throat) and then they never turn into

anything much after that.

[Guest guest]

I have the same symptoms and I am an old timer with CFIDS/FM,I use to try to

explain it as having the Flu and the worst hanger over ever, CFIDS did cure

my young partying days. LOL

I remember reading a report on cytokines and hearing a lot about

them years ago in reference to this illness. Therefore the I in CFIDS,

according to that report our bodies were swimming in them as if the were

looking for

something to fight and maybe just never shut off. It was explained like an

army the general of our immune system says, alert, alert virus incoming and

sends out the cytokines to take care of the virus but can't find it, the

general, who knows everything, says " Oh yes there is now get out there find it

now. " So our bodies are loaded with them.

When we do catch a cold it is the immune system that makes us feel sick not

the cold itself. I believe that is why we rarely catch colds all our

cytokines are just so happy to have something to do besides making us feel

like, well

you know.

Makes good sense to me and why they need to search and search for more

to make this a valid illness and get rid of the CFS part is beyond me.

In a message dated 3/27/2006 10:27:10 P.M. Eastern Standard Time,

alison@... writes:

Despite the fact that I daily have the severe fatigue, chronic pain and

muscle weakness that makes one feel like they have a " never-ending flu " ...I

never get much of a cold or stomach flu or anything.

I'm curious if anyone else has noticed this?

[Guest guest]

There appears to be an apparent divide in this regard. I unfortunately

fall on the side of catching every cold and virus

P.J.

>

>

> In a message dated 3/27/2006 10:27:10 P.M. Eastern Standard Time,

> alison@... writes:

>

> Despite the fact that I daily have the severe fatigue, chronic pain

and

> muscle weakness that makes one feel like they have a " never-ending

flu " ...I

> never get much of a cold or stomach flu or anything.

> I'm curious if anyone else has noticed this?

[Guest guest]

Hi All,

I get lots of chest Infections, every time I get a head cold it goes to my

chest. I also get lots of UTI's in spite of being on prophlactic

Antibotics. I am currently recovering from a kidney Infection my worst so

far, it has taken 3 antibotics to get this far.

Regards

Geraldine

To: <CFAlliance >

Sent: Tuesday, March 28, 2006 8:53 PM

Subject: Re: Question for Everyone

> Hi all:

> I think I may have posted before on this, not sure, but I do get sick

> allot with sinus infection, which I understand is a problem with CFS. I

> had a bad flu this year, no shot, was to late on it, so I do get sick,

> more than most actually. Maybe I am an exception, have always been that

> way, before getting ill.

> Thanks

> Jeanette French

[Guest guest]

How strange! I have recurring sinus infections all year! I wait until it gets

real bad and then go to see my ENT specialist. I get a shot, meds and a

wonderful but really expensive nasal spray that has steroids in it. If I don't

get the injection, I have to have at least two rounds of antibiotic to knock it.

Haven't had the flu (knock on wood), strep throat, stomach virus or anything

similar for years.

Kathy

[Guest guest]

Hi Geraldine,

Your post caught my eye... " I get lots of chest infections, every time I

get a head cold it goes to my chest. I also get lots of UTI's in spite

of being on prophylactic antibiotics. "

Your description above describes exactly some of the symptoms my

children had growing up. They also had chronic sinus infections and ear

infections. When they were 31 and 28, we learned that they have primary

ciliary dyskinesia, a very rare genetically transmitted syndrome.

Because PCD is so rare (It is estimated that 25,000 Americans and

400,000 people worldwide suffer from PCD. In the United States, fewer

than 1,000 PCD patients have been identified. copyright PCD

Foundation), most doctors are not familiar with it.

Here is the description of the disorder and symptoms from the PCD

website at http://www.pcdfoundation.org:

People with PCD do not have functioning cilia. Their cilia may be

completely paralyzed (immotile cilia), beat inadequately or in an

ineffective fashion (dyskinetic cilia), or may not have developed at

all (ciliary aplasia). Without functioning cilia, people with PCD are

unable to protect their respiratory system. Frequent infections of the

lungs, ears, throat, and sinuses are common. After time, the infections

cause permanent damage to these structures.

What Are The Symptoms of PCD?

PCD is frequently mistaken for cystic fibrosis or " atypical " asthma.

However, unlike CF patients, people with PCD will have normal sweat

chloride values. The typical PCD patient has a history that includes

neonatal respiratory distress (coughing, gagging, choking, lung

collapse as a newborn), chronic cough, pneumonia, bronchitis,

atelectasis, excess mucus, and difficulty clearing lung secretions.

Otitis media (middle ear infections) and hearing loss are universal in

this patient population, as are severe sinus infections. Nasal

polyposis is common. copyright PCD Foundation

I suggest that you go to the PCD Foundation website and read about PCD.

If you think there's a possibility that you may have it, the website

has a physician referral list.

My children's health has improved exponentially now that they are

educated about treatment modalities for PCD and follow them faithfully.

So far, neither of them shows any signs of fibromyalgia or restless

legs syndrome, and I hope they remain free of these disorders. They

have been very supportive of me and my learning process of how to live

my life to the fullest with a body that no longer functions the way I

want it to.

It's been a long haul, but I am now much more functional than I was in

the 90's, and my pain level has substantially decreased. As long as I'm

faithful in monitoring my activities so that I don't have a fibro flare

and continue my moderate exercise program, I do pretty well. I'm

unable to work due to fibro fog, but I am now doing about 10-15 hours a

week volunteer work. I received a lot of help after my diagnosis and

through the years of learning to cope with fibro. It's very rewarding

to give back to the community.

I send positive energy your way to help you cope with those pesky head

colds that go into chest infections and UTI's.

Kay

Message: 6

Date: Wed, 29 Mar 2006 23:23:37 +0100

From: " Geraldine O'Sullivan-Hogan "

Subject: Re: Re: Question for Everyone

Hi All,

I get lots of chest Infections, every time I get a head cold it goes

to my

chest. I also get lots of UTI's in spite of being on prophlactic

Antibotics. I am currently recovering from a kidney Infection my

worst so

far, it has taken 3 antibotics to get this far.

Regards

Geraldine

[Guest guest]

Hi Kate:

I wanted to also comment that I'm like you. It's so strange. I have the

severe fatigue. In fact I'm quitting my job in two weeks because I can't work

anymore due to my CFS.

My husband will come down with colds all the time and sore throats and I never

get anything from him. He even gets so sick sometimes from being wore down that

he gets temps. of 100 and 101 and I never get anything.

Lou

girlmomx4@... wrote:

Hi and Everyone...

Maybe we should make a poll to ask this question, but for now I will just ask it

here.

commented on not getting colds.

I've noticed that too. Since my chronic fatigue and/or other autoimmune issues

that I have been dealing with for the past 6 years...I have noticed that while

my family will get sick with colds, viruses, flus, etc. - I will start to get

them (like a little bit of sore scratchy throat) and then they never turn into

anything much after that.

[Guest guest]

Hi Shycat2:

I have been so sick this past week. Migraine, and so sick to my stomach, and one

night I got so dizzy I figured I had an aneurysm, and would probably die. I made

sure my bird was back in her cage just in case, but these flu like symptoms are

so, so annoying, ca;can't stand up or get so sick to stomach. UGH !!!

Jeanette French

RE: Question for Everyone

I have the same symptoms and I am an old timer with CFIDS/FM,I use to try to

explain it as having the Flu and the worst hanger over ever, CFIDS did cure

my young partying days. LOL

I remember reading a report on cytokines and hearing a lot about

them years ago in reference to this illness.

[Guest guest]

Hi Geraldine:

I used to be the same way with colds going to my chest. I got the Pneumonia

vaccine and after that they rarely go into my chest anymore, just a

suggestion....the shot I think last about 10--15 years.

Jeanette French

Re: Re: Question for Everyone

Hi All,

I get lots of chest Infections, every time I get a head cold it goes to my

chest. I also get lots of UTI's in spite of being on prophlactic

Antibotics. I am currently recovering from a kidney Infection my worst so

far, it has taken 3 antibotics to get this far.

Regards

Geraldine

[Guest guest]

Hi Kathy, I read an article recently where they have linked chronic sinus

infections with this illness, and I have them to...I want to get surgery if I

can ever find a decent ENT around here,

Take care...Do you want to read the article, I will have to track it down but

very interesting. I have been sick lately so may not be back to you right away,

but let me know,

Thanks

Jeanette French

Re: Question for Everyone

How strange! I have recurring sinus infections all year! I wait until it

gets real bad and then go to see my ENT specialist. I get a shot, meds and a

wonderful but really expensive nasal spray that has steroids in it. If I don't

get the injection, I have to have at least two rounds of antibiotic to knock it.

Haven't had the flu (knock on wood), strep throat, stomach virus or anything

similar for years.

Kathy

[Guest guest]

Hi:

I too have CFS and chronic sinsus infections. I first came down with CFS in

1996 and made a full recovery within 2 years. Didn't realize that you could

get it again, but in 2000 I started having chronic sinus problems. Came on out

of no where and after living on antibotics for over a year, I had my first of

two sinus surgeries. From the sinus surgery I got a staff infection in my

sinuses and then the CFS came back with a vengance! That was years ago and I

still battle with both. Now I'm down to approx 5 or 6 infections per year!

With each infection the CFS acts up, so they keep each other going.

I always read the posts on this site, but normally I don't have anything to

add that might help someone else, so I don't usually reply. Could you tell me

where I might find this article on chronic sinuses and CFS? THANKS and hope

your doing well.

Take Care,

Kim

Jeanette French wrote:

Hi Kathy, I read an article recently where they have linked chronic sinus

infections with this illness, and I have them to...I want to get surgery if I

can ever find a decent ENT around here,

Take care...Do you want to read the article, I will have to track it down but

very interesting. I have been sick lately so may not be back to you right away,

but let me know,

Thanks

Jeanette French

[Guest guest]

Lou,

I have CF/FM and the only way I can work at any work is to watch my diet.

No gains, starches, sugars. When I cheat, I get so tired and sore.

Look into the SCD diet.

Shari

_____

From: CFAlliance [mailto:CFAlliance ] On

Behalf Of cindy post

Sent: Saturday, April 01, 2006 1:49 PM

To: CFAlliance

Subject: Re: Question for Everyone

Hi Kate:

I wanted to also comment that I'm like you. It's so strange. I have the

severe fatigue. In fact I'm quitting my job in two weeks because I can't

work anymore due to my CFS.

My husband will come down with colds all the time and sore throats and I

never get anything from him. He even gets so sick sometimes from being wore

down that he gets temps. of 100 and 101 and I never get anything.

Lou

[Guest guest]

Kathy,

I too have sinus problems. I think I have Candida in my sinus. Please send

a link to the article. I am on a gluten free diet for my CF/FM. The more I

take out grains, starches and sugars, the better I feel.

Shari

_____

From: CFAlliance [mailto:CFAlliance ] On

Behalf Of Jeanette French

Sent: Saturday, April 01, 2006 2:13 PM

To: CFAlliance

Subject: Re: Question for Everyone

Hi Kathy, I read an article recently where they have linked chronic sinus

infections with this illness, and I have them to...I want to get surgery if

I can ever find a decent ENT around here,

Take care...Do you want to read the article, I will have to track it down

but very interesting. I have been sick lately so may not be back to you

right away, but let me know,

Thanks

Jeanette French

[Guest guest]

Hi Jeanette,

Thanks for that I will try asking my GP again for that vaccine he previously

told me that it was only for the elderly.

Regards

Geraldine

-----

To: <CFAlliance >

Sent: Saturday, April 01, 2006 9:11 PM

Subject: Re: Question for Everyone

> Hi Geraldine:

> I used to be the same way with colds going to my chest. I got the

> Pneumonia vaccine and after that they rarely go into my chest anymore,

> just a suggestion....the shot I think last about 10--15 years.

> Jeanette French

[Guest guest]

What is in the vaccine Jeannette? I am not familiar with that one.

Does it have mercury or mercury deviative in it? or aluminum? etc etc.? I am

more concerned with what they use for fillers and preservatives. I am not keen

on getting sicker.

blessings

Shan

> Date: Sat, 1 Apr 2006 15:11:10 -0500

>

> Subject: Re: Question for Everyone

>

> Hi Geraldine:

> I used to be the same way with colds going to my chest. I got the Pneumonia

> vaccine and after that they rarely go into my chest anymore, just a

> suggestion....the shot I think last about 10--15 years.

> Jeanette French

[Guest guest]

Thanks Kay I will check it out.

Regards

Geraldine

Re: Question for Everyone

> Hi Geraldine,

>

> Your post caught my eye... " I get lots of chest infections, every time I

> get a head cold it goes to my chest. I also get lots of UTI's in spite

> of being on prophylactic antibiotics. "

[Guest guest]

Hi Shan,

I really don't know, sorry, but it has helped me allot, any harm done I am not

aware of...

Jeanette French

Re: Re: Question for Everyone

What is in the vaccine Jeannette? I am not familiar with that one.

Does it have mercury or mercury deviative in it? or aluminum? etc etc.? I am

more concerned with what they use for fillers and preservatives. I am not keen

on getting sicker.

blessings

Shan