newby with question

[Guest guest]

Hi Robbie and welcome! The three components for diagnosis as you know

are asthma, polyps, and aspirin " sensitivity " ...meaning some have a

reaction as light as runny nose, itchy eyes, feeling yucky (great

medical term huh?) to hives and anaphylaxsis, and anywhere in between.

Sounds like you have Samters. The sjogrens can also happen to some of

us as an autoimmune response. Some of us have other issues like lupus,

fibromyalgia, churg-strauss, etc. Something goes haywire in our immune

response but seems nobody can tell us exactly what, how, when, or what

exactly to do about it! Trial and error has brought many of us to

different treatments and long searches for good doctors. Where are you

located and do you have top medical care available? Keep us posted as

to how you are doing. Trudy.

[Guest guest]

Hi, Robbie,

Welcome to 'Club Samters! In my opinion, "if it walks like a duck"....sounds like Samters to me, coincidentally or not. I'd be interested in how you got a diagnosis of Sjogrens Syndrome, too.

Billie in TexasRobbie <rshannonhouse@...> wrote:

Hi! My name is Robbie. I've had a few doctors refer to me as having Aspirin Triad or Asthma Triad, so I took the time to look it up and found you folks. I've been reading back posts and now I'm wondering if I really have Samters or not. I'd appreciate your opinions, because, having other medical problems, I've found that 90% of the time, the patients know more about diagnosis of the disease than the doctors. I don't want to have docs assuming I have Samters if I don't. Some have even mentioned desensitization and that sounds kinda dangerous to me.

I've had asthma since childhood. I'm told by my pulminologist that it's allergy-induced asthma and I have years of lung scarring. I'm pretty well controlled by classic meds, but find that when I'm out of city bad air, I don't even need them. I have no evidence that aspirin causes an increase in my asthma symptoms, but then I haven't experimented with taking it either, because...

When I was a child, Aspirin gave me problems. My mother says that every time she gave it too me as a child, I complained of being cold and my hands and feet were icy. As soon as Tylenol hit the market, I never took it again. As an adult I began having arthritis and was tried on a number of NSAIDs and Vioxx. All caused Edema (water-retention swelling). Finally, my pharmacist told me to tell my doctor I was allergic to aspirin and shouldn't take any more aspirin-related meds. My doctor agreed. I'm back to only Tylenol.

I've had 3 sinus surgeries. The first one involved removing several nasal polyps. In 4 years so far, I've had no more, but the ENT told me they were caused by aspirin and NSAIDs and told me that if I didn't take them, I would not grow them back. I haven't taken them, so I don't know if I had taken aspirin, if they would have come back. I'm on Rhinocort Aqua every day for nasal swelling and also do daily sinus rinses. I've only had one sinus infection, but it lasted years as I was only given short (usually one-week) courses of antibiotics. Finally the ENT diagnosed Pseudomonas and gave me 6 weeks of Levaquin, which took care of it. I've had no further sinus infections, so my doc thinks the swelling and mucus production is due mostly to allergies and dryness from Sjogrens Syndrome.

So, the big questions is, Do I have Samters? Or just co-incidently also have separate Asthma, Aspirin allergy, and a history of Nasal Polyps?

I'd appreciate your informed opinions. Thanks.

Robbie

Discover Get on-the-go sports scores, stock quotes, news more. Check it out!

[Guest guest]

Hi!

Having here for a bit and have a question. How long do you use the

origianal scoby before changing to a baby? I had been brewing for a

while and giving all my spare away...but the last few batches didn't

taste right.....so I am getting a new one...but need to know how long

to use the original before changing?

Thanks

Ronni