onset

[Guest guest]

From C 3816@...

In 1945 while living in upper NY state I was diagnosed with scarlet fever. We

were quarentined for 6 weeks. We were told that I was the only person in the

state of NY with scarlet fever!! I had many unexplained high fevers and

swollen glands as a small child. The onset of CFIDS was gradual...........for

me. However, I was an International F/A and had a business........I thought

that is why I was so fatigued all the time. Many health problems during this

time........finally in Oct. of 1986 I could no longer work. I was diagnosed

with CFIDS in Jan. of 1987. I still thought the fatigue was from over working

and the the time changes I dealt with!!

Carole

[Guest guest]

In a message dated 6/3/99 11:06:47 AM Eastern Daylight Time,

C3814@... writes:

<< In 1945 while living in upper NY state I was diagnosed with scarlet fever.

>>

That's what was pinpointed by a specialist after many years as my " starting

point " , Carole. I became paralyzed for two days following scarlet fever,

which can often be the beginning of CFIDS. The gradual onset began with

frequent migraines, pain, etc.

Gail

[Guest guest]

Thank you for your response Gail, very interesting.........I have never

discussed the scarlet fever with my Dr.!

Carole

[Guest guest]

Hi ,

I too read all the archives. There were only 3000 at the time, in 2002. It really is amazing to see that other people have have similar symptoms and reactions to my (our) strange disease.

I have also had allergies all my life. They have always been difficult to control. I now think I had non-allergic rhinitis as well as some real allergies. My reactions to this day look like allergies, but it is really a hyper reactive immune system I have.

Genetically, both my parents have allergies. Out of four children, two have none, one has mild occasional symptoms, and me. I think it makes sense that I inherited a weakness that contributed to the progression. My lifestyle has also contributed. I spent 20 years renovating houses and breathed all the dust and chemicals associated. I am especially sensitive to those that I have been exposed to.

My asthma started after my sinuses were completely occluded with polyps and I was only mouth breathing. I think my body found a different outlet when my nose was blocked. The asthma remains even though my sinuses are clear.

I have not given up hope that I will get better. I have made changes in my diet and lifestyle. I don’t like taking drugs, but I’m faithful to the aspirin.

Welcome aboard, I have enjoyed reading your comments. You are a very thoughtful person.

Pam

On 6/29/06 9:45 AM, " Saidel " <scott_saidel@...> wrote:

I am in March 2003 in the archives.

Interesting discussion regarding the onset of symptoms.

One person (sorry, forgot the name) ascribed onset to a miscarriage.

Some research indicates that Samters may be preceded by a viral infection.

For myself, although I had allergies my whole life, I had a severe case of pneumonia when

I was twelve, after that the asthmatic symptoms started. I didn't hear anything about

polyps or Samters until I was in Law School - where I had a GREAT pulmonologist. He was

the one that diagnosed Samters.

Based on my history, there is some anecdotal evidence that the symptomology was

precipitated by a viral infection. Anyone else?

I have a hard time with the idea that this is a genetic condition (although there might be

genetic predisposition) just looking at the names and general background information that

i have been able to glean about the people here through their posts, we seem to be a

widely variant cross section - different ethnic backgrounds, different economic strata,

different geographic locations. A pathogen would seem to make much more sense than a

common genetic link across such a diverse population but at the same time would be

difficult to explain over such a broad geographic cross section.

To facilitate this discussion:

I am 39, raised in Central, NJ, Jewish (Eastern European), aside from the Samters and,

perhaps, and underlying allergic condition I am healthy. Assuming onset at the time that

my asthma developed, I had not travelled beyond the east coast and had spent the

majoriity of my time in the suburbs of central New Jersey.

[Guest guest]

Hi Michele,

I have had asthma attacks that albuterol didn’t help. They are usually at night. Things that have helped - 1. Rinsing my nose with the water pic. The post nasal drip was the cause. 2. Eating and or drinking. Chocolate helps. 3. Sleeping on couch and changing the sheets the next day. 4. Two Benedryll will often help. One is good for prevention, but I need 2 for relief.

Do you live with anyone? You may need to wake them if it is not getting better. They may be able to help or decide that you need to go to the emergency room. For me, it is hard to realize that I’m not getting better and ask for help. Lack of oxygen clouds your brain and makes it hard to make decisions. I have read that most asthma deaths happen in the early morning because no one’s around.

If you do live alone, and if you don’t, test your peak flow and set a bottom limit under which you will call the paramedics or someone to help.

Lastly, I keep an emergency stash of prednisone. That is what they will give you in the hospital.

I have a question. Last night I had a moderate asthma attack. It wasn't 'scary' but very annoying. It lasted over 5 hours. Nothing helped it: I tried Albuterol, Xopenex, and then Ipratropium Bromide. Has anyone had this happen? If so, what do you do? I waited, and at 1:30am it finally subsided.

Michele

[Guest guest]

Wow, Lori, you've really had some experiences!!!Lori Baur <lori@...> wrote: I've never gotten prednisone in the hospital, but maybe they give that to some people. It doesn't work immediately for an acute attack as far as I know. I've always gotten an adrenaline shot in the butt. Those are fun. Then maybe an IV drip of steroids overnight and possibly longer. But really my favorite part of all my ER visits has to have been an arterial blood gas. Anyone ever have one of those? Just reminiscing

about the old days before desensitization, LOL. Lori

How low will we go? Check out Messenger’s low PC-to-Phone call rates.

[Guest guest]

If they asked me, I could write a book

Re: Onset

Wow, Lori, you've really had some experiences!!!Lori Baur <lori@...> wrote:

I've never gotten prednisone in the hospital, but maybe they give that to some people. It doesn't work immediately for an acute attack as far as I know. I've always gotten an adrenaline shot in the butt. Those are fun. Then maybe an IV drip of steroids overnight and possibly longer. But really my favorite part of all my ER visits has to have been an arterial blood gas. Anyone ever have one of those? Just reminiscing about the old days before desensitization, LOL.

Lori

How low will we go? Check out Messenger’s low PC-to-Phone call rates.

[Guest guest]

The prednisone works in 20 minutes plus or minus. If you are in a real crisis it is not fast enough. My aim is to not reach the crisis level again.

I went to the emergency room once. I was at my worst with the asthma. I was seeing a pulmonologist, an allergist, a holistic environmental illness MD, and my primary care Dr. This was before I found this group. My husband was an EMT, so he could give me Oxygen to drive the Nebulizor, and a pulse-ox to monitor me. The night I went in my oxygen saturation was down to 68%. I was panicked and without rationalization. The ambulance came with two of our best friends as the paramedics. They tried to calm me down and then decided to take me in. At the hospital they gave me more albuterol and steroids intravenously. I was there for 6 hours. I was better O2 wise before we got to the hospital, but everyone was scared by the 68%.

I am much much better now. Thanks to you all.

Pam

On 6/29/06 4:30 PM, " michele bledsoe " <know_better_time@...> wrote:

Hi Pamela...

thank you for this information. Yes, I live alone. I often call my boyfriend when i'm having an attack. And he keeps calling ...

I do have prednisone... I didn't know that is what they give you in the hospital. My doctor gave me a couple of refills... as he said I should have it on hand. How quickly does it work?

Michele

[Guest guest]

Hi Pam.. Thank you for this information. It helps a great deal... as< like you said, has this group! MichelePamela <pam@...> wrote: The prednisone works in 20 minutes plus or minus. If you are in a real crisis it is not fast enough. My aim is to not reach the crisis level again. I went to the emergency room once. I was at my worst with the asthma. I was seeing a pulmonologist, an allergist, a holistic environmental illness MD, and my

primary care Dr. This was before I found this group. My husband was an EMT, so he could give me Oxygen to drive the Nebulizor, and a pulse-ox to monitor me. The night I went in my oxygen saturation was down to 68%. I was panicked and without rationalization. The ambulance came with two of our best friends as the paramedics. They tried to calm me down and then decided to take me in. At the hospital they gave me more albuterol and steroids intravenously. I was there for 6 hours. I was better O2 wise before we got to the hospital, but everyone was scared by the 68%.I am much much better now. Thanks to you all.PamOn 6/29/06 4:30 PM, "michele bledsoe" <know_better_time@...> wrote: Hi Pamela... thank you for this information. Yes, I live alone. I often call my boyfriend when i'm having an attack.

And he keeps calling ... I do have prednisone... I didn't know that is what they give you in the hospital. My doctor gave me a couple of refills... as he said I should have it on hand. How quickly does it work? Michele __________________________________________________

[Guest guest]

I guess the prednisone might work fast, but it is not a bronchodilator. So it will work on the inflammation, but that's really the underlying component, and doesn't really do much in an acute asthma attack, as far as I understand it. I think the adrenaline shots and nebulizer treatments that I also used to have in the ER (forgot about those) are bronchodilators so they'll work on the bronchoconstriction of the acute attack. Maybe one of the docs here can clarify this.

Lori

Re: Onset

The prednisone works in 20 minutes plus or minus. If you are in a real crisis it is not fast enough. My aim is to not reach the crisis level again. I went to the emergency room once. I was at my worst with the asthma. I was seeing a pulmonologist, an allergist, a holistic environmental illness MD, and my primary care Dr. This was before I found this group. My husband was an EMT, so he could give me Oxygen to drive the Nebulizor, and a pulse-ox to monitor me. The night I went in my oxygen saturation was down to 68%. I was panicked and without rationalization. The ambulance came with two of our best friends as the paramedics. They tried to calm me down and then decided to take me in. At the hospital they gave me more albuterol and steroids intravenously. I was there for 6 hours. I was better O2 wise before we got to the hospital, but everyone was scared by the 68%.I am much much better now. Thanks to you all.PamOn 6/29/06 4:30 PM, "michele bledsoe" <know_better_time@...> wrote:

Hi Pamela... thank you for this information. Yes, I live alone. I often call my boyfriend when i'm having an attack. And he keeps calling ... I do have prednisone... I didn't know that is what they give you in the hospital. My doctor gave me a couple of refills... as he said I should have it on hand. How quickly does it work? Michele

[Guest guest]

Predisone or steroids even Iv do not work quickly. Even if you go to the ER and get them intravenously they still take 6-8 hours ( approximately) to start working. Other things have to be used in the meantime to help in an emergency asthma attack. Carol

Re: Onset

The prednisone works in 20 minutes plus or minus. If you are in a real crisis it is not fast enough. My aim is to not reach the crisis level again. I went to the emergency room once. I was at my worst with the asthma. I was seeing a pulmonologist, an allergist, a holistic environmental illness MD, and my primary care Dr. This was before I found this group. My husband was an EMT, so he could give me Oxygen to drive the Nebulizor, and a pulse-ox to monitor me. The night I went in my oxygen saturation was down to 68%. I was panicked and without rationalization. The ambulance came with two of our best friends as the paramedics. They tried to calm me down and then decided to take me in. At the hospital they gave me more albuterol and steroids intravenously. I was there for 6 hours. I was better O2 wise before we got to the hospital, but everyone was scared by the 68%.I am much much better now. Thanks to you all.PamOn 6/29/06 4:30 PM, "michele bledsoe" <know_better_time@...> wrote:

Hi Pamela... thank you for this information. Yes, I live alone. I often call my boyfriend when i'm having an attack. And he keeps calling ... I do have prednisone... I didn't know that is what they give you in the hospital. My doctor gave me a couple of refills... as he said I should have it on hand. How quickly does it work? Michele

[Guest guest]

As I understand it, IV steroids start to work *immediately* damping

down the start of the immune response. It can be a few hours before

the sufferer starts to feel 'better' as the effects of other parts

of the immune response, (which nebulizers etc address) subside back

to a normal level.

Andy

>

>

>

> Hi Pamela...

>

> thank you for this information. Yes, I live alone. I often

call my boyfriend when i'm having an attack. And he keeps

calling ...

>

> I do have prednisone... I didn't know that is what they give

you in the hospital. My doctor gave me a couple of refills... as he

said I should have it on hand. How quickly does it work?

>

> Michele

>

[Guest guest]

Genetics just seems off to me - just looking at the names of the people here

we have people of so many different nationalities. If it were genetic I'd

expect to see more of a cluster. Does anyone know if there has ever been a

study, like in Europe, on the incidence level of Samters over different

nationalities? Does it exist in Asian or African populations?

Environmental seems odd too, as everyone seems to be spread over such a

large geographic area. Given the disperse geography, it seems unlikely that

it is any one single environmental cause and both external (weather and

environment) and internal (foods etc) vary over this broad of effected

persons.

Obviously the weather is different here in Florida then Alaska, as are the

flora and fauna. More interestingly so are many of the consumer products -

even more so when you look at effected people from overseas where most

brands and products are different.

I just don't see any commonality. We need Sherlock Holmes!

ie

[Guest guest]

Pamela,

I've been in those really close situations myself. My own theory is

that the albuterol isn't helping because of the throat response that

commonly accompanies the asthma itself and requires different

emergency medication.

With asthma alone, you're not moving the carbon dioxide out so you're

having trouble with your expiration of air (wheezing etc). However,

with Samters there is often that throat swelling/inflammation that

causes a double whammy because you can't get air down to your lungs

in the first place. Your O2 drops fast (have had those arterial

blood gas tests myself with usual results in the 50% range). And it

hurts like hell. Albuterol doesn't help if you can't get it down to

your lungs in the first place because your throat is swollen.

Anyway, I've found that if I tell them to just go straight to the

epinephrine, which relaxes the smooth muscles of your throat, you're

much more likely to get quick relief than with a bunch of nebulized

albuterol and oxygen. You can inhale the epinephrine mixed with

saline and it immediately loosens up those constricted throat muscles.

Good luck with that...Zyflo has really helped me overcome those awful

situations and has kept the prednisone (or IV steroids-salumedrol) to

a minimum.

>

> > Hi Pamela...

> >

> > thank you for this information. Yes, I live alone. I often call

my boyfriend

> > when i'm having an attack. And he keeps calling ...

> >

> > I do have prednisone... I didn't know that is what they give you

in the

> > hospital. My doctor gave me a couple of refills... as he said I

should have

> > it on hand. How quickly does it work?

> >

> > Michele

> >

> >>>

> >>

> >

> >

>