Meds

[Guest guest]

GailVW,

Oh, well that kind of explains it. That type of medication can wreak real

havoc on weight loss. But remember I'm no doctor just speaking from past

experience. Give yourself a little time to rid your body of this stuff and

don't forget to eat! Boy, I wish I could say that louder. You really,

really don't want to send yourself into conservation mode with your body

thinking that you're starving it. You may have some initial weight loss by

not eating adequate amounts of good food, but it will be very temporary,

until your metabolism just slows down to nothing and you become so hungry

that you just can't stand it anymore.

Far better to jump start your metabolism by breathing and supplying it with

real food as fuel, to burn that unwanted fat. By golly, when you're hungry,

eat! Just try to make the best food choices you can, doing what you can to

stay away from the junk food, lacking in any type of nutrition that your body

needs. Good to hear from you!

Sincerely,

Tami

[Guest guest]

Tami,

As hard as it is not to get into the diet mentality I have been eating. I got

Breaking out of Food Jail on your recommendation. I have not finished reading

it yet, but what I have read so far makes

sense.

Time for me to go to bed now. Goodnight.

Gail VW

Emailtamihere@... wrote:

> GailVW,

> Oh, well that kind of explains it. That type of medication can wreak real

> havoc on weight loss. But remember I'm no doctor just speaking from past

> experience. Give yourself a little time to rid your body of this stuff and

> don't forget to eat! Boy, I wish I could say that louder. You really,

> really don't want to send yourself into conservation mode with your body

> thinking that you're starving it. You may have some initial weight loss by

> not eating adequate amounts of good food, but it will be very temporary,

> until your metabolism just slows down to nothing and you become so hungry

> that you just can't stand it anymore.

>

> Far better to jump start your metabolism by breathing and supplying it with

> real food as fuel, to burn that unwanted fat. By golly, when you're hungry,

> eat! Just try to make the best food choices you can, doing what you can to

> stay away from the junk food, lacking in any type of nutrition that your body

> needs. Good to hear from you!

>

> Sincerely,

> Tami

>

> ------------------------------------------------------------------------

> Failed tests, classes skipped, forgotten locker combinations.

> Remember the good 'ol days

> 1/4053/1/_/812636/_/959314538/

> ------------------------------------------------------------------------

>

> Please use our list bookstore In Association with Amazon.com If you are

looking for anything, please click on this link first! Thanks!

http://www.amazon.com/exec/obidos/redirect-home/karmasrecommerea

>

> If you choose to read the messages from the web, then you might be interested

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>

>

[Guest guest]

You obviously haven't read nor understood a thing in this column.

Your lover is being lead to the slaughter by murderers disguised as

doctors.

1. HIV is a theory. A fiction. It hasn't been isolated. Your lover's

anitbody test indicates exposure to more antibodies and oxidants than

most others. That's all. It is not specific to HIV, which they cannot

identify.

2. The PCR viral load test is not specific to HIV and does not

indicate exposure to 'HIV' ( see previous point ). These tests are

used to support each other, and neither have any meaning, when used

in the context of 'HIV'.. It's circular logic.

3. The longer your lover takes those meds, the sicker he will become,

regardless of the surrogate markers of health ( which are nonsense).

The medications stop very basic, vital and necessary life-sustaining

metabolic processes. If he experiences any increase in T Cells, it is

temporary and is because they are being driven out of his bone

marrow. If his T Cells are low, it is NOT because 'HIV' is 'eating'

them it is because his thymus has stopped producing them. He is on

his way to liver failure, or a heart condition. All in the name of

stopping a harmless 'retrovirus' (no retrovirus has ever been

isolated....it's just a theory ). 'AIDS' doctors should get 'tear-

drop' tattoos...they're murderers.

4. GET HIM OFF THOSE MEDS AND START EDUCATING YOURSELF AS TO TO HOW

TO GET AND STAY HEALTHY. Read previous postings. Explore the CureZone

site. My lover died of liver failure in the prime of his life for

trusting a doctor who trusted a pharmaceutical company, who based

their efforts on a theory proposed by a greedy, ignorant pseudo-

scientist. Get the Maggiore book. Spend HOURS at the virusmyth.net

site. Or be prepared to live alone. Good luck.

> Here is a bit of an update. My other half started taking combivir

and

> kaletra. He just started yesterday and is into his second day

today.

> I find it interested how they 'insist' you take your meds everyday

> and not miss any doses. It is almost like they are pushing you to

do

> it. They said if he misses a dose, it can cause the virus to mutate

> and to recognize the meds, therfore becoming ineffective. Damn does

> this virus have a mind of its own or what?

>

> I have read all the horrors of AZT and AZT is in combivir. I shared

> my concerns with a doctor about AZT. Even she said AZT did

literally

> used to kill people, but the AZT in combivir is at a smaller dose

> than what it was before. He wont get any new numbers(T cell & viral

> load) for another week or two. Even those numbers may not mean too

> much. Ive read alot about the so called viral load numbers and that

> the number is multiplied by 60. I still need to do more reading on

> virusmyth.org and the other sites as well.

>

> Not much else to talk about now, but I heard bush went to africa?

> Does that have something to do with aids?

>

> storm

[Guest guest]

Furthermore, since THERE IS NO VIRUS, it does not 'mutate', he will

just get sicker, due to the toxic medications he is taking. It's not

that the medications are no longer effective, it's that they're very

effective. They're effectively killing him. His T Cells will drop,

because his poor body simply can't take having more toxins thrown

into it. Get a juicer. See Schulz's site.

> Here is a bit of an update. My other half started taking combivir

and

> kaletra. He just started yesterday and is into his second day

today.

> I find it interested how they 'insist' you take your meds everyday

> and not miss any doses. It is almost like they are pushing you to

do

> it. They said if he misses a dose, it can cause the virus to mutate

> and to recognize the meds, therfore becoming ineffective. Damn does

> this virus have a mind of its own or what?

>

> I have read all the horrors of AZT and AZT is in combivir. I shared

> my concerns with a doctor about AZT. Even she said AZT did

literally

> used to kill people, but the AZT in combivir is at a smaller dose

> than what it was before. He wont get any new numbers(T cell & viral

> load) for another week or two. Even those numbers may not mean too

> much. Ive read alot about the so called viral load numbers and that

> the number is multiplied by 60. I still need to do more reading on

> virusmyth.org and the other sites as well.

>

> Not much else to talk about now, but I heard bush went to africa?

> Does that have something to do with aids?

>

> storm

[Guest guest]

What would you be using it for?

in Italy

> has anyone here tried Wellbutrin, Im not sure that is spelled

right?

[Guest guest]

In a message dated 9/2/2004 9:18:36 AM Pacific Standard Time,

writes:

know many pharmacies will take returns on medications that can

verify as unopened.

Years ago, I was able to return medications to my doctor that the doctor had

prescribed to me, but didn't work, or I had an adverse reaction to. He then

'gave' the meds to someone else, who may have lacked insurance or been short on

cash but needed the meds.

Not sure if now... 20 years later, doctors will still do that or not.

K

[Guest guest]

Dear Bea,

I do not remember using the term " hoovering " in either of my emails to this

group. I have

always lived in the U.S., and when I went to the pain clinic that did only

injections this

was in lower Michigan. Yes, I agree that it is very troublesome to just go to

the store

for an hour and to come home in complete pain, but that is pretty much my life

right now.

My left butt cheek is what has been bothering me for the last several weeks.

My pain seems to gravitate to that area with more intensity. With summer coming

I hate to think

about all the things I will miss out on, or the pain that I will suffer with

if I do try to partici-

pate. Friends and even family just don't get that I can be in such pain after

doing what

seems to be things that they do and take for granted every day. They never

suffer with pain

after doing these things.

Guess I just needed to vent here a little!!

Take care.

Bonnie

---------------------------------

Finding fabulous fares is fun.

Let FareChase search your favorite travel sites to find flight and hotel

bargains.

[Guest guest]

Dear Bonnie,

Well, I never deny that some days I think I'm going slightly bonkers! I am so

sorry I got your note confused with something else I read (which I can't find).

Somewhere I read an email from someone who said they had been doing a little

" hoovering " , as in vacuuming, and it had caused pain. I MUST stop trying to use

my computer as I'm dozing off. The other night I was attempting to answer one of

the notes and I realized I had started dozing off and was typing who-knows-what.

I was so glad that I never sent the email when I checked the next morning!

But back to you and the frustration you must be feeling right now. I know what

you mean when you say your butt hurts. That is where my worse pain is located.

Right in the bone I sit on. I actually had my regular doctor check to see if I

had suddenly gotten some virulent form of bone cancer when I first broke the rod

and fusion. It was pain that was worse than the natural labor that I went thru

with my second baby- far worse. It was so horrible it's hard for me to even

think about it and understand in my own memory how bad it was. And my pain

doctor has said he doesn't think the surgery I need will help that pain- the

butt bone pain. Which is manageable if I monitor my activities. But without the

meds you need I can't imagine how you deal with it. I also have some sciatic

nerve pain, and other back and leg pain. But it's that awful butt pain that can

take me down and put me in the bed.

I am so sorry you don't have the understanding from people around you. I got

so lucky in that area. I have so many people telling me to rest and to not

'overdo' that I sometimes get tired of it. But that's better than having that

lack of understanding. You are in the right place to vent. I have no ideas about

how you can get them to see how hard it is for you to do everyday things. I have

a sister-in-law who calls me to tell me how wonderful her life is and all the

things she has planned. She'll lay out her whole day. When I was at the very

worse, after the holidays, where I could only get up to use the bathroom, it got

to be too much for me. She had asked me how I was. I told her I was in a lot of

pain. She then went into her fun plans, and all she had done earlier in the

week. When she hung up I cried and cried. I then called her and told her hard

that was for me to hear when I can't get up to get a cup of coffee. She really

was sorry. I don't think she's a mean person.

She still does it from time to time. But it made me feel better to have told

her how I felt. You would think people would have more empathy. I've come to see

that people who have never had pain (don't you hate hearing someone say " I never

even have a headache " ?) really understand how hard it is to suffer every waking

hour. And how hard it is to hear friends talk about trips or activities and know

you don't have the freedom to plan those things. But this is our lives and we

have to either make the best of it or make ourselves even more miserable. I have

had some anxiety and some depression, after I was hurt, and I will take physical

pain over emotional pain any day. My back injury has definitely changed my life,

but some of the changes have been good for me. Too long a story, plus boring to

anyone but me, so I won't go into it here. But I actually have come to see my

back as a blessing. Which sounds goody-two-shoes, Pollyanna to say, but it is

true. It has made me slow down

and take care of some very important things.

I hope you have a good weekend. Same to everyone else here. Happy Mother's Day

to everyone who is a mom. And I do hope you can get a referral to a good pain

clinic. Best of luck! Bea

Bonnie Kunschke <bonnieknschk@...> wrote:

Dear Bea,

I do not remember using the term " hoovering " in either of my emails to this

group. I have

always lived in the U.S., and when I went to the pain clinic that did only

injections this

was in lower Michigan. Yes, I agree that it is very troublesome to just go to

the store

for an hour and to come home in complete pain, but that is pretty much my life

right now.

My left butt cheek is what has been bothering me for the last several weeks. My

pain seems to gravitate to that area with more intensity. With summer coming I

hate to think

about all the things I will miss out on, or the pain that I will suffer with if

I do try to partici-

pate. Friends and even family just don't get that I can be in such pain after

doing what

seems to be things that they do and take for granted every day. They never

suffer with pain

after doing these things.

Guess I just needed to vent here a little!!

Take care.

Bonnie

---------------------------------

Finding fabulous fares is fun.

Let FareChase search your favorite travel sites to find flight and hotel

bargains.

[Guest guest]

I am on Zonagran for pain. It is an anti convulsant and works pretty well at this time. Since the pain is neuropathic most 'pain meds' don't work but the meds that work for neuropathic pain work. I see a Neurologist and a Neurosurgeon. Before this I was on Neurontin and that also worked well for a couple years. Most of my pain is in my legs and feet and I have severe neuropathy. Lyrica (sp?) did not work at all for me. Jan BHug your kids. Tell them you love them. No one is immortal.

[Guest guest]

Thanks, . I also take the NSAIDs on a very limited basis because of the

potential long-term side effects. To help digest them, I always take a

Pepcid about 15 minutes prior to taking an NSAID. That seems to help.

I understand that the topical NSAIDs have minimal effect.

I may try one shot of cortisone to get some swelling down and then follow up

with the Hyaluronic Acid shots. If not that, I'll go the prolotherapy route.

I never took any oral cortisone so, unfortunately, I can't help you with

that.

Anne

**************Create a Home Theater Like the Pros. Watch the video on AOL

Home.

(http://home.aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aolhom00030\

000000001)

[Guest guest]

Yes, I agree. Pred. is some serious stuff.

Anne

**************Create a Home Theater Like the Pros. Watch the video on AOL

Home.

(http://home.aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aolhom00030\

000000001)

[Guest guest]

I have done a 10(?) day card of prednisone in an emergency. It helped me more

than any NSAID (except Vioxx), but I wouldn't use prednisone unless your back is

against the wall.

Mike

MT

meds

Hi Anne,

I found topical gel (solargel) to work for about 1 day. A cortisone shot

helped slightly but is worth a try. Alleve is supposed to be the best I

found it caused depression and heartburn (GERD). I tolerate ibuprofen better

and it really helps but after a couple of days I get GERD from it too. I'm

wondering if a burst of oral cortisone would help me? Not to take it

regularly but maybe for a week or two. Anyone tried that???

[Guest guest]

YOU CRACK ME UP...THANKS FOR THE LAUGH!!!

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Read reviews on AOL Autos.

(http://autos.aol.com/cars-BMW-128-2008/expert-review?ncid=aolaut00050000000017

)

[Guest guest]

--- I hear ya Mike,, my Dr likes to give verset.. i love it,, but i

understand the feeling of not knowing whats going on. at times I would

reather not know.. when I had my scs surgery they gave me something,,

not sure what, but I guess I was awake,, dont remember it,,, as much

as I talk in my sleep,, who knows what I told them lol ...have a

great day everyone...

In Stimulator , " mike2boys " <mike2boys@...> wrote:

>

> I will never forget when my doctor do a surgery or out pateint

> injections he would have iv of fentaynl mixed with verset it lets

you

> stay awake but your totally unaware of being awake. when i had my

IDET

> surgery i was give it. it blocks your memory most weired

experiance I

> ever had. I could been spilling out a secret or converstation not

> knowing it. I think i rather be knocked out then be awake and not

aware

> of it. mike group owner

>

[Guest guest]

Hi Dan,

I too currently take Advair, Singulair, and a generic form of nasocort. I know that the cost can add up pretty fast with these meds. I did notice some improvement with singulair, probably not as much as I had hoped. I did however just go through aspirin desensitization this past weekend and hope to ween myself off of most of my medications over the next 4-6 months. Have you done any reading about this treatment?

Good Luck,

Pete

From: dan <darokly@...>Subject: Medssamters Date: Monday, November 16, 2009, 6:45 AM

I am a new memeber to this group and I am wondering if anyone can shed any light on the meds i am taking. Have been on advair and fluticasone for the last 3 years with good success. My doctor now wants me to add singulair to this regimine, have been on it for about a week, wondering if it will improve things significantly. Have to admit the cost now for the 3 of these each month is starting to add up, my share now is $60. Any suggestions from anyone. Should add that i have had 6 sinus surgeries and 4 major asthma attacks before i found out i was aspirin sensitive and have samter's triad.

[Guest guest]

I am pretty sure my asthma would not be so well controlled

without the Singulair I take every day. I take Asmanex instead of Advair only

because the Singulair does not last for 24 hours. I have had several docs tell

me that the Singulair was “required” to help treat my Samter’s. I would think

though that it would help your asthma. I have been using Flonase and now

Veramyst for many years and they help a lot with symptoms and esp. my

allergies. Again, another drug I was told I’d be on for life due to the Samter’s.

And to be honest whenever I have tried a different nasal spray I was

miserable! I also take Allegra daily for my allergies.

Good luck!

K.

From:

samters [mailto:samters ] On Behalf Of dan

Sent: Monday, November 16, 2009 7:46 AM

samters

Subject: Meds

I am a new memeber to this group and I am

wondering if anyone can shed any light on the meds i am taking. Have been on

advair and fluticasone for the last 3 years with good success. My doctor now

wants me to add singulair to this regimine, have been on it for about a week,

wondering if it will improve things significantly. Have to admit the cost now

for the 3 of these each month is starting to add up, my share now is $60. Any

suggestions from anyone. Should add that i have had 6 sinus surgeries and 4

major asthma attacks before i found out i was aspirin sensitive and have

samter's triad.

[Guest guest]

Hi Dan,

Sorry that you had to wait so long to learn about Samter's.

Unfortunately, the most common situation is that Doctors, even ENT's,

either only know indirectly of Samter's (ie through books), or have no

idea how to manage it.

Generally speaking, the idea is to stay on the least amount of

medications that stabilizes your condition, but it may be that your doc

tries to add Singulair because of your past history. If your situation

was fine, did he explain why he wanted you on Singulair ?

>

> I am a new memeber to this group and I am wondering if anyone can shed

any light on the meds i am taking. Have been on advair and fluticasone

for the last 3 years with good success. My doctor now wants me to add

singulair to this regimine, have been on it for about a week, wondering

if it will improve things significantly. Have to admit the cost now for

the 3 of these each month is starting to add up, my share now is $60.

Any suggestions from anyone. Should add that i have had 6 sinus

surgeries and 4 major asthma attacks before i found out i was aspirin

sensitive and have samter's triad.

>

[Guest guest]

Just a quick post to say I really to appreciate your posts, asfyso as they are so informative and caring. You are a very valued member of our group who givs a lot of your time to informing us. I don't post as often as i should but I do read/scan through all samters posts, and I get a lot from this site. I hope that I do help a little too.

I personally am struggling with trying to keep a permanent sinus infection at bay and i have read the biofilms posts with interest. I am on strong antibiotics - 2 lots, and my infection which did seem to improve has now levelled out and is back on the increase (whilst coming to the end of a 4 week course of cyprofloxacin and amoxycillin). I am at a loss as to what to do as only steroids really help, but I am so steroid dependant and am trying to cut down. i have been desens for 2 years and am still desens, but that only really has helped with being able to eat all the foods i couldn't eat before (high sals) and has reduced polyp growth and serious asthma. i still have yucky sinuses which are the bain of my life.

This is where I'm at now and seeem to be stuck at.

regards

Becky

From: asfy <asfyso@...>samters Sent: Sun, 22 November, 2009 19:01:02Subject: Re: Meds

Hi Dan,Sorry that you had to wait so long to learn about Samter's.Unfortunately, the most common situation is that Doctors, even ENT's,either only know indirectly of Samter's (ie through books), or have noidea how to manage it.Generally speaking, the idea is to stay on the least amount ofmedications that stabilizes your condition, but it may be that your doctries to add Singulair because of your past history. If your situationwas fine, did he explain why he wanted you on Singulair ?>> I am a new memeber to this group and I am wondering if anyone can shedany light on the meds i am taking. Have been on advair and fluticasonefor the last 3 years with good success. My doctor now wants me to addsingulair

to this regimine, have been on it for about a week, wonderingif it will improve things significantly. Have to admit the cost now forthe 3 of these each month is starting to add up, my share now is $60. Any suggestions from anyone. Should add that i have had 6 sinussurgeries and 4 major asthma attacks before i found out i was aspirinsensitive and have samter's triad.>

[Guest guest]

Wow ! You are singing my exact song! Desens after 2 and a half years is keeping my polyps at bay, but I am on my 3rd course of Leavaquin in 3 months for a nasty sinus infection that just will not completely clear itself. I am thinking it is again the moldy school I teach in. My doctor gave me one round of Prednisone which helped, but will not give me anymore. He just is big on not repeating steroid use because of nasty longterm side effects. Keep us posted if you and your ENT come up with any new ideas. Hope you feel better soon.

Jane

From: Bannister <beckyb256@...>Subject: Re: Re: Medssamters Date: Sunday, November 22, 2009, 12:38 PM

Just a quick post to say I really to appreciate your posts, asfyso as they are so informative and caring. You are a very valued member of our group who givs a lot of your time to informing us. I don't post as often as i should but I do read/scan through all samters posts, and I get a lot from this site. I hope that I do help a little too.

I personally am struggling with trying to keep a permanent sinus infection at bay and i have read the biofilms posts with interest. I am on strong antibiotics - 2 lots, and my infection which did seem to improve has now levelled out and is back on the increase (whilst coming to the end of a 4 week course of cyprofloxacin and amoxycillin) . I am at a loss as to what to do as only steroids really help, but I am so steroid dependant and am trying to cut down. i have been desens for 2 years and am still desens, but that only really has helped with being able to eat all the foods i couldn't eat before (high sals) and has reduced polyp growth and serious asthma. i still have yucky sinuses which are the bain of my life.

This is where I'm at now and seeem to be stuck at.

regards

Becky

From: asfy <asfyso (DOT) fr>samters@groups .comSent: Sun, 22 November, 2009 19:01:02Subject: Re: Meds

Hi Dan,Sorry that you had to wait so long to learn about Samter's.Unfortunately, the most common situation is that Doctors, even ENT's,either only know indirectly of Samter's (ie through books), or have noidea how to manage it.Generally speaking, the idea is to stay on the least amount ofmedications that stabilizes your condition, but it may be that your doctries to add Singulair because of your past history. If your situationwas fine, did he explain why he wanted you on Singulair ?>> I am a new memeber to this group and I am wondering if anyone can shedany light on the meds i am taking. Have been on advair and fluticasonefor the last 3 years with good success. My

doctor now wants me to addsingulair to this regimine, have been on it for about a week, wonderingif it will improve things significantly. Have to admit the cost now forthe 3 of these each month is starting to add up, my share now is $60. Any suggestions from anyone. Should add that i have had 6 sinussurgeries and 4 major asthma attacks before i found out i was aspirinsensitive and have samter's triad.>

[Guest guest]

Hi Jane,

So you know how I feel!! I guess on the whole we are the lucky ones, but a chronic sinus infection constantly keeps me/us from feeling well and reaching my full potential, energy-wise.

At 39 years old, and having had Samters for a full 10 years now, I already have osteopenic bones - the precursor to osteoporosis and I get glaucoma when on steroids, so I know they are not doing me any good, side-effects wise, but they Do help get the infection out and open up my sinuses so I can even smell.

I loved your 'hope you feel better soon'! it gave me my fist laugh of the day ;-)

Have you found an antibiotic that works for you? I am finding that a combination of co-amoxyclav (crushed into my saline rinse) and ciprofloxacin (taken orally) will reduce the infection and keep it reduced for as long as i take them, but the day I stop my infection comes back and by day 3 of being off antibiotics I'll have a raging infection again. I am allergic to many antibiotics and I suspect I'm resistant to almost all now. So what to do????

Becky x

From: Jane Marino <janesmarino@...>samters Sent: Sun, 22 November, 2009 22:27:09Subject: Re: Re: Meds

Wow ! You are singing my exact song! Desens after 2 and a half years is keeping my polyps at bay, but I am on my 3rd course of Leavaquin in 3 months for a nasty sinus infection that just will not completely clear itself. I am thinking it is again the moldy school I teach in. My doctor gave me one round of Prednisone which helped, but will not give me anymore. He just is big on not repeating steroid use because of nasty longterm side effects. Keep us posted if you and your ENT come up with any new ideas. Hope you feel better soon.

Jane

From: Bannister <beckyb256 (DOT) co.uk>Subject: Re: Re: Medssamters@groups .comDate: Sunday, November 22, 2009, 12:38 PM

Just a quick post to say I really to appreciate your posts, asfyso as they are so informative and caring. You are a very valued member of our group who givs a lot of your time to informing us. I don't post as often as i should but I do read/scan through all samters posts, and I get a lot from this site. I hope that I do help a little too.

I personally am struggling with trying to keep a permanent sinus infection at bay and i have read the biofilms posts with interest. I am on strong antibiotics - 2 lots, and my infection which did seem to improve has now levelled out and is back on the increase (whilst coming to the end of a 4 week course of cyprofloxacin and amoxycillin) . I am at a loss as to what to do as only steroids really help, but I am so steroid dependant and am trying to cut down. i have been desens for 2 years and am still desens, but that only really has helped with being able to eat all the foods i couldn't eat before (high sals) and has reduced polyp growth and serious asthma. i still have yucky sinuses which are the bain of my life.

This is where I'm at now and seeem to be stuck at.

regards

Becky

From: asfy <asfyso (DOT) fr>samters@groups .comSent: Sun, 22 November, 2009 19:01:02Subject: Re: Meds

Hi Dan,Sorry that you had to wait so long to learn about Samter's.Unfortunately, the most common situation is that Doctors, even ENT's,either only know indirectly of Samter's (ie through books), or have noidea how to manage it.Generally speaking, the idea is to stay on the least amount ofmedications that stabilizes your condition, but it may be that your doctries to add Singulair because of your past history. If your situationwas fine, did he explain why he wanted you on Singulair ?>> I am a new memeber to this group and I am wondering if anyone can shedany light on the meds i am taking. Have been on advair and fluticasonefor the last 3 years with good success. My doctor now wants me to addsingulair to

this regimine, have been on it for about a week, wonderingif it will improve things significantly. Have to admit the cost now forthe 3 of these each month is starting to add up, my share now is $60. Any suggestions from anyone. Should add that i have had 6 sinussurgeries and 4 major asthma attacks before i found out i was aspirinsensitive and have samter's triad.>

[Guest guest]



Hi Becky,

When you last had your sinus's scanned how did the sphenoid look? I noticed that when mine got infected really bad that it was the end of any meds taking it away. I walked around for a few years with fevers daily. I can't say enough as to how being without infection has helped my life. My fatigue is so much better. This last year after my lothrop procedure is the only time in the last decade that my sinus infections have been basically non existant. I credit the surgery, maybe the surgeon for getting every last bit of infection out during this procedure. Hope you are feeling better soon Becky.

Tami

Re: Meds

Hi Dan,Sorry that you had to wait so long to learn about Samter's.Unfortunately, the most common situation is that Doctors, even ENT's,either only know indirectly of Samter's (ie through books), or have noidea how to manage it.Generally speaking, the idea is to stay on the least amount ofmedications that stabilizes your condition, but it may be that your doctries to add Singulair because of your past history. If your situationwas fine, did he explain why he wanted you on Singulair ?>> I am a new memeber to this group and I am wondering if anyone can shedany light on the meds i am taking. Have been on advair and fluticasonefor the last 3 years with good success. My doctor now wants me to addsingulair to this regimine, have been on it for about a week, wonderingif it will improve things significantly. Have to admit the cost now forthe 3 of these each month is starting to add up, my share now is $60. Any suggestions from anyone. Should add that i have had 6 sinussurgeries and 4 major asthma attacks before i found out i was aspirinsensitive and have samter's triad.>

[Guest guest]

Hi Tami,

I do wonder whether surgery may be the only option, but am so loathe to go through that. If i KNEW it could guarantee no further infections then I'd go for it, but there are so many unknowns with surgery.

I am so glad you are feeling better and are infecton-free following your last surgery.

Becky

From: Tami Klumpyan <tami1961@...>samters Sent: Mon, 23 November, 2009 14:43:03Subject: Re: Re: Meds

 Hi Becky,

When you last had your sinus's scanned how did the sphenoid look? I noticed that when mine got infected really bad that it was the end of any meds taking it away. I walked around for a few years with fevers daily. I can't say enough as to how being without infection has helped my life. My fatigue is so much better. This last year after my lothrop procedure is the only time in the last decade that my sinus infections have been basically non existant. I credit the surgery, maybe the surgeon for getting every last bit of infection out during this procedure. Hope you are feeling better soon Becky.

Tami

Re: Meds

Hi Dan,Sorry that you had to wait so long to learn about Samter's.Unfortunately, the most common situation is that Doctors, even ENT's,either only know indirectly of Samter's (ie through books), or have noidea how to manage it.Generally speaking, the idea is to stay on the least amount ofmedications that stabilizes your condition, but it may be that your doctries to add Singulair because of your past history. If your situationwas fine, did he explain why he wanted you on Singulair ?>> I am a new memeber to this group and I am wondering if anyone can shedany light on the meds i am taking. Have been on advair and fluticasonefor the last 3 years with good success. My doctor now wants me to addsingulair

to this regimine, have been on it for about a week, wonderingif it will improve things significantly. Have to admit the cost now forthe 3 of these each month is starting to add up, my share now is $60. Any suggestions from anyone. Should add that i have had 6 sinussurgeries and 4 major asthma attacks before i found out i was aspirinsensitive and have samter's triad.>

[Guest guest]

,

I have not found a particular antibiotic that works best. My doctor would like to put me on an antibiotic nasal spray that I would stay on, but can't start me on that until this 3-month long infection is cleared up! He has wanted me to stay on the antibiotic Levaquin, even though as soon as I go off of it, the infection is back. I am seeing my ENT in December and may ask for a CTscan to see if there is anything going on that may be holding an infection in my sinuses. I had my immune system tested last June and my doctor told me I had the immune system of a 20 year old! So why the chronic infections? All I can think is that I teach in a very old school and all of us teachers and the kids seem to be chronically sick. I really have to look at changing schools at the end of this school year or selling makeup at the Macy's counter!!!!

As for osteoporosis, I need to have a bone density test done. I have had some back issues and right away I begin to worry that it's the years of on-and-off again Prednisone.

Jane

From: Bannister <beckyb256 (DOT) co.uk>Subject: Re: Re: Medssamters@groups .comDate: Sunday, November 22, 2009, 12:38 PM

Just a quick post to say I really to appreciate your posts, asfyso as they are so informative and caring. You are a very valued member of our group who givs a lot of your time to informing us. I don't post as often as i should but I do read/scan through all samters posts, and I get a lot from this site. I hope that I do help a little too.

I personally am struggling with trying to keep a permanent sinus infection at bay and i have read the biofilms posts with interest. I am on strong antibiotics - 2 lots, and my infection which did seem to improve has now levelled out and is back on the increase (whilst coming to the end of a 4 week course of cyprofloxacin and amoxycillin) . I am at a loss as to what to do as only steroids really help, but I am so steroid dependant and am trying to cut down. i have been desens for 2 years and am still desens, but that only really has helped with being able to eat all the foods i couldn't eat before (high sals) and has reduced polyp growth and serious asthma. i still have yucky sinuses which are the bain of my life.

This is where I'm at now and seeem to be stuck at.

regards

Becky

From: asfy <asfyso (DOT) fr>samters@groups .comSent: Sun, 22 November, 2009 19:01:02Subject: Re: Meds

Hi Dan,Sorry that you had to wait so long to learn about Samter's.Unfortunately, the most common situation is that Doctors, even ENT's,either only know indirectly of Samter's (ie through books), or have noidea how to manage it.Generally speaking, the idea is to stay on the least amount ofmedications that stabilizes your condition, but it may be that your doctries to add Singulair because of your past history. If your situationwas fine, did he explain why he wanted you on Singulair ?>> I am a new memeber to this group and I am wondering if anyone can shedany light on the meds i am taking. Have been on advair and fluticasonefor the last 3 years with good success. My doctor now wants me to addsingulair to

this regimine, have been on it for about a week, wonderingif it will improve things significantly. Have to admit the cost now forthe 3 of these each month is starting to add up, my share now is $60. Any suggestions from anyone. Should add that i have had 6 sinussurgeries and 4 major asthma attacks before i found out i was aspirinsensitive and have samter's triad.>

[Guest guest]

,

I've only taken Levaquin once that I can remember. It worked really well even though it made me sick. I was kind of nauseated the whole time I was taking it. The crazy thing was I actually got my sense of smell back while I was taking it. It did last for a bit but eventually left me like it always does. Usually Prednisone or something like it is the only thing that gives me back my SOS. Like you said, as soon as I quit taking the Levaquin. I got the chronic infections back.

Evie

-- Re: Meds

Hi Dan,Sorry that you had to wait so long to learn about Samter's.Unfortunately, the most common situation is that Doctors, even ENT's,either only know indirectly of Samter's (ie through books), or have noidea how to manage it.Generally speaking, the idea is to stay on the least amount ofmedications that stabilizes your condition, but it may be that your doctries to add Singulair because of your past history. If your situationwas fine, did he explain why he wanted you on Singulair ?>> I am a new memeber to this group and I am wondering if anyone can shedany light on the meds i am taking. Have been on advair and fluticasonefor the last 3 years with good success. My doctor now wants me to addsingulair to this regimine, have been on it for about a week, wonderingif it will improve things significantly. Have to admit the cost now forthe 3 of these each month is starting to add up, my share now is $60. Any suggestions from anyone. Should add that i have had 6 sinussurgeries and 4 major asthma attacks before i found out i was aspirinsensitive and have samter's triad.>

[Guest guest]

Hi ,

Thank you, I also learn a lot from everyone's experiences here. I am

sorry to hear things have not improved - and I really think that you

have only two options now : finding an antibiotic that works, or heading

to surgery.

When starting an antibiotic treatment, ENTs use what they call

probabilistic treatment, which basically means that they begin by

throwing at the germ the drug that most often works on the general

population for sinusitis, but that may have nothing to do with the best

drug for your precise germ. So, if it does not work, they switch to a

second one, and so on. This is also why, at some point, they perform a

swab of the nasal mucosa and send it to the lab to determine which germs

will grow, in order to switch to the most appropriate antibiotic. But

studies have shown that a mere nasal swab will not reveal what germ

really is inside the sinuses, and will on the contrary yield other germs

that have generally nothing to do with the infection. This is why it is

recommended to perform an endoscopic swab, right inside the offending

sinus(es). Only an endoscopic swab, followed by a culture in a competent

lab, will point out the right antibiotic.

This digression is meant to illustrate the point that, if you stay on an

antibiotic strategy, you can either keep following the probabilistic

path - which has not really worked this well so far - or you can try to

get some focus on the germ, which is what I would recommend. It requires

of course that you find an ENT willing and above all competent to do it.

Only then will you have a chance of getting better success with

antibiotics.

You can of course stay on the probabilistic path, using gentamycin,

tobramycin, nebulized or IV, or whatever, irrigate with manuka honey

like Nils - and that may work partially or entirely, but this is NOT

certain at all, and it will take months for you to know, and it may also

increase the resistance of the germs.

If you happen to have a biofilm - which is not the case with everyone

with chronic sinusitis, but still is with a variable proportion of

patients, normal amounts of usual antibiotics will not harm it. Symptoms

may come and go, but it will reawaken any time the treatment stops. Even

very high doses of nebulized antibiotics may not overcome it. In fact,

the required doses to bust the biofilm are so high that they will be

toxic to the mucosa. This situation leads to only two options : one is a

new, " biofilm buster " drug - and many researchers work on such drugs

now, but nothing definitive is ready - and the other is getting rid of

the biofilm mechanically.

By " mechanically " , I mean either through classical surgery, or through

new techniques which are being perfected and are not available yet (like

endoscopic ultrasounds, high-pressure ultrasonic flush, lasers,

electrical currents, and whathever else).

Since these new techniques will not be available for a number of years -

hopefully a small number - that leaves only surgery as an option.

Biofilms are not necessarily thick, so the surgeon only needs very

moderate scraping of the sinuses, but, like all FESS, this scraping has

to be thorough, with a good wash, antibiotics throughout, etc - and the

patient has to be careful not to get reinfected afterwards.

I am not discussing the situation of osteomyelitis here (when the bones

supporting the sinuses get infected), which is worse than a surface

biofilm.

So, if I were you, I would at least try to find an ENT willing to

perform endoscopic swabs, and failing this option, think about surgery.

This does not mean that a probabilistic treatment will not help, but the

odds are against it.

> >

> > I am a new memeber to this group and I am wondering if anyone can

shed

> any light on the meds i am taking. Have been on advair and fluticasone

> for the last 3 years with good success. My doctor now wants me to add

> singulair to this regimine, have been on it for about a week,

wondering

> if it will improve things significantly. Have to admit the cost now

for

> the 3 of these each month is starting to add up, my share now is $60.

> Any suggestions from anyone. Should add that i have had 6 sinus

> surgeries and 4 major asthma attacks before i found out i was aspirin

> sensitive and have samter's triad.

> >

>