Newbie

March 11, 2006

In a message dated 3/11/2006 6:52:38 PM Central Standard Time,

sweetpeamoss@... writes:

hi i'm new to this group and looking for some support. i get so

frustrated that even the simpliest tasks are such a struggle. it is

hard to try to keep a positive outlook on life so maybe i need friends

who understand my pain. my ra is the worst in my knees so walking or

standing is extremely painful.

Hi sweetpea and welcome Having RA is a daily battle we all have to deal

with here. You will find friends and support that you may not be getting where

you are. Tell us about yourself...name, age, are you on any medications for

your RA? I also have RA in my knees and hands so iknow how it is walking when

you really dont want to. hugs hope to hear from you soon.

from PA

March 12, 2006

Welcome Carol. You've come to the right place to find understanding.

My knees were always

my worse too until I finally got them both replaced. Now my ankles

have taken 1st place in the pain category.

One day I'll probably get them replaced as well.

Enbrel has been a big help to me.

a

On Mar 11, 2006, at 11:27 AM, carol wrote:

> hi i'm new to this group and looking for some support. i get so

> frustrated that even the simpliest tasks are such a struggle. it is

> hard to try to keep a positive outlook on life so maybe i need friends

> who understand my pain. my ra is the worst in my knees so walking or

> standing is extremely painful.

>

March 12, 2006

i've talked to the doctor about knee replacement but

was told that at 47 i'm to young how old were you when

you had it done? i know that the quality of my life

would improve with this surgery. the doctor i talked

to was in houston and we have recently moved to

lynchburg virginia so now i will have to find new

doctors. my rhemetologist was in lake charles la. i

have mixed feelings about a new doctor. i was on

remicade with the old one which helped my wrists

greatly but had no effect on the knee pain. so a new

doctor may try a new treatment that will work better.

i have heard many people say embrel has worked wonders

for them. thanks for the words of encouragement. you

don't know how much i was needing them. having just

moved i was feeling very isolated and alone.

__________________________________________________

March 12, 2006

Welcome to the group Carol. I just wanted to tell you that I work with Patient

Partners in Arthritis, all of us (25-30 members) all have RA. At least 6 or

more have had 1 or both knees replaced and most had the operation before they

were 40. I don't think age is important if you are living with consta pain,

unable to do activities associated with daily living etc.

Hugs

June

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

From: Carol Moss

i've talked to the doctor about knee replacement but

was told that at 47 i'm to young how old were you when

you had it done? i know that the quality of my life

would improve with this surgery. the doctor i talked

to was in houston and we have recently moved to

lynchburg virginia so now i will have to find new

doctors. my rhemetologist was in lake charles la. i

have mixed feelings about a new doctor. i was on

remicade with the old one which helped my wrists

greatly but had no effect on the knee pain. so a new

doctor may try a new treatment that will work better.

i have heard many people say embrel has worked wonders

for them. thanks for the words of encouragement. you

don't know how much i was needing them. having just

moved i was feeling very isolated and alone.

__________________________________________________

March 12, 2006

Carol,

I had my knees done when I was 43. The reason they try to make you

wait is

because the lifespan of knee replacements is about 15 years and

chances are

they will have to be done again. That's fine with me. My current

doctor told me that

RA patients usually get many more years from joint replacements since

we're not

out skiing, jogging and doing other activities that shorten their

lifespan.

The reason the Remicade isn't effective on your knees may be because

they

are deteriorated to the point that they are bone on bone. That is

what happened to mine.

I also understand how you feel about being alone after moving. After

moving to

Florida from my hometown of 49 years, finding new doctors and missing

old friends

was hard to deal with. I still haven't found an orthopedic and will

probably return to

NJ if anything happens to my knees. I'm glad you found us and hope

you feel like

you've found a bunch of new friends.

a

On Mar 12, 2006, at 12:58 PM, Carol Moss wrote:

> i've talked to the doctor about knee replacement but

> was told that at 47 i'm to young how old were you when

> you had it done? i know that the quality of my life

> would improve with this surgery. the doctor i talked

> to was in houston and we have recently moved to

> lynchburg virginia so now i will have to find new

> doctors. my rhemetologist was in lake charles la. i

> have mixed feelings about a new doctor. i was on

> remicade with the old one which helped my wrists

> greatly but had no effect on the knee pain. so a new

> doctor may try a new treatment that will work better.

> i have heard many people say embrel has worked wonders

> for them. thanks for the words of encouragement. you

> don't know how much i was needing them. having just

> moved i was feeling very isolated and alone.

>

> __________________________________________________

>

March 13, 2006

Welcome Carol.

I don't post often. I try not to post if I am in a lot of pain and

when my perspective isn't in a positive place, but I wanted to just

comment on a few things you mentioned.

I do understand the kind of pain you are in, starting over in another

state, getting frustrated because I am used to being so independent

before RA and I guess I still mourn the loss of the old me. I was 31

when diagnosed and have had the condition more than 10 years. I have

never been in remission and still looking for a therapy to relive the

pain. There is a lot of joint damage as well.

At the moment my liver enzymes are too high -- from medications most

likely. I don't go out or do any recreational ethanol or illicit

drug use -- so it would have to be the medications causing the

elevated liver enzymes. This is keeping from taking any meds. I am

married so I have the insurance but a lot of things aren't covered or

barely covered.

I have been considering SSdisability. Have you thought of trying

that to cover meds until you guys can get back on your feet.

As for weight helping with RA, which is what really made me want to

comment, I have never been overweight. I was 136 pounds when

diagnosed with RA. I have not been higher than a size 10 and I am

normally 5'8 " when able to stand (the hips are very bad). Every book

I purchase for RA says to lose weight first thing. Yet, I have never

been overweight. So I really think too much emphasis is placed on

the correlation between arthritis and being overweight. The people

who say it's weight are barking up the wrong tree as the saying goes.

ha!

I do believe less weight is better for you in more ways than one,

but I am thin and still in excruciating pain at this very moment. So

the fact someone told you that you would not have pain anymore was a

very misleading thing to say to you.

I do believe having a purpose to get up everyday is key. I am still

searching for mine after the loss of my daughter. However, having

animals to care for helps. I started feeding the backyard birds and

it helps. A loving supportive husband is a plus for you and will

help you to heal in the long run, I believe. It is my belief stress

makes you sicker and if you don't have love in your life, stress

takes over. Love heals. Laughter heals also.

I see you have a lot of my concerns and I could go on and on but

won't be that cruel. I hope I haven't written too much already.

I want to mention one more thing about medications. Montel

is helping people unable to purchase meds get their meds. He has a

van that goes around to different states but I believe you can call

to get more info. I see it advertised but I don't have much more

info. on it but maybe it is something else you can look into along

with SS disability. take care.

peace,

Ebony

March 21, 2006

You are very fotunate to have found a doc who'll treat chronic sinus

infection with i.v. abx. Where do you live? I'd like to put this

doc's name in our resource file (filed in my brain, not publicly, :-

)

There's an ENT in my town who also treats with abx for as long as it

takes, and she's gotten people well. But it can take a year or more,

so be patient.

Is this doc culturing your bugs? This is very important, so he/she

can keep ahead of them when they " turn " and the bugs become

resistant. Guesswork isn't nearly as effective. I should know,

that's what I've been doing and it's more difficult. Tony, a member

of our list who at one time was severely ill, is incredibly healthy

now, but he continuously monitored the state of his own organisms

and their susceptibility to abx.

Anyway, keep us posted on your progress, and the protocol your doc

is using. We can all help each other with these reports.

penny

In infections , Meg <megsmight@...>

wrote:

>

> Hi - My name is Meg & I am new to your group.

>

> I have chronic sinus infections and was told by 2 surgeons my

only option was surgery. I went on the internet and found this not

to be true. I found a different Dr and now have a line in my arm

feeding me iv antibiotics. I am hoping this to be my cure. I am

sick and tired or being sick and tired. I suffer from migraines &

have had a headache for a week possible reaction to the medication.

>

> I was hoping to find some others who might share their stories

with me.

>

> Thanks for being here.

>

> Meg

>

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

> Relax. virus scanning helps detect nasty viruses!

>

March 21, 2006

Hello Meg ,welcome to the group.. Here's some info on sinusitis ..as you see you may well have a bacterial infection but the underlying cause is a fungal and the strange immune response to that infection ..It's worth checking out , perhaps try Rx Antifungal as a probe!...

Mayo Clinic researchers have proposed that most chronic sinus infections maybe caused by an immune system response to fungi. Many studies here at the Mayo Clinic have added evidence to our thinkingthat chronic rhinosinusitis is caused by an immune reaction to fungi in thenose. Our original study linking chronic rhinosinusitis to fungi in thenose, which was published in the Mayo Clinic Proceedings in September 1999,has been reproduced and confirmed by a sinus center in Europe (ENTUniversity Hospital in Graz, Austria).There are currently 16 studies at Mayo Clinic Rochester to furtherinvestigate the role of fungi in inflammatory diseases of the respiratorytract.In addition, researchers from the Allergic Diseases Research Laboratory at the Mayo Clinic in Rochester found that certain white blood cells

called T-Lymphocytes are reacting to the fungi and were producing the kind of inflammation we see in the sinuses, and that healthy people did

not react in that way. This work was presented at the 2001 Annual Meeting of the American Academy of Allergy, Asthma and Immunology and

will be published soon.The evidence was so convincing that the National Institute of Health (NIH)has given Mayo Clinic a $2.5 million grant to further investigate the

mechanisms behind this immunologic response to the fungi.If you have chronic sinusitis—that is, a sinus inflammation that persistsfor three months or longer—we recommend that you see your personalphysician or an ear, nose and throat specialist (otorhinolaryngologist) forthe appropriate treatment for this disease. Many times the disease isassociated with asthma or allergies and treatment of those associatedproblems tends to help the chronic sinusitis.Antibiotics don’t help chronic sinusitis in the long run because they targetbacteria, which are not usually the cause of chronic sinusitis.Anti-histamines, nasal steroid sprays and systemic steroids are themainstays of treatment today, depending on the symptoms of the patient.Over-the-counter medications, including salt-water nasal washes and mistsprays, are useful in treating the symptoms of chronic sinusitis, but do noteliminate the inflammation.Dept of OtorhinolaryngologyMayo ClinicRochester, Minnesota

This latest report supports the link with CFS [ME] an

d fungal infectionhttp://news.bbc.co.uk/1/hi/health/3141773.stm

Stop press information http://www.sciencedaily.com/releases/2004/03/040324072619.htm

See Medline 12464951 for results of a study using antifungal drugs to treat sinusitis.

-----Original Message-----From: infections [mailto:infections ]On Behalf Of MegSent: 20 March 2006 20:24 Subject: [infections] Newbie

Hi - My name is Meg & I am new to your group.

I have chronic sinus infections and was told by 2 surgeons my only option was surgery. I went on the internet and found this not to be true. I found a different Dr and now have a line in my arm feeding me iv antibiotics. I am hoping this to be my cure. I am sick and tired or being sick and tired. I suffer from migraines & have had a headache for a week possible reaction to the medication.

I was hoping to find some others who might share their stories with me.

Thanks for being here.

Meg

Relax. virus scanning helps detect nasty viruses!

April 1, 2006

-hi meg I am also new but know some members from other groups.

have you ever had a root canal? that can contribute or cause sinus

problems.

I am very sick from my root canal and after many years had this

verified by a mold expert. his theory is that the sinus infections and

cognitive and well all the health stuff are from mold. I tested

positive for many molds on a blood antibody. and although there are

likely tons of bacteria too, he says to treat the mold first or the

antibioitcs wont work. this sounds rather different that what I ahve

heard from others. but I am now on nizoral mold spray and it is the

first thing to help.

it seems that wiht bacterias you need the exact culture of what it is

and the right medicine. it seems from my tests and treatment of mold

that the different molds can all be treeated wiht the same meds? not

sure but it seems like that.

amy

April 5, 2006

Hi Amy, I, thankfully, have never had a root canal however w/ this infection I have had extreme tooth pain because the roots of my teeth are so long. I am very curious about the mold treatment. I used to live in a house years ago that was so bad that the mold would grow up the walls. I was constantly scrubbing it down. I never had any allergies until then. Now they say I don't have allergies (they did the stick test w/ all those needles) however I know that from April to Oct I have problems. Are there other groups specific for sinus infections I could join. This one has been so helpful but I feel like I need more. Besides the iv antibiotics they have me on Flonase because it is antifungal. Hate it though ... I also use a saline flush which has given me some relief thank you so much for your response. It gives me hope that I won't have to go have that God awful surgery. Megamydent9 <amydent9@...> wrote: -hi meg I am also new but know some members from other groups.have you ever had a root canal? that can contribute or cause sinusproblems.I am very sick from my root canal and after many years had thisverified by a mold expert. his theory is that the sinus infections andcognitive and well all the health stuff are from mold. I testedpositive for many molds on a blood antibody. and although there are likely tons of bacteria too, he says to treat the mold first or theantibioitcs wont work. this sounds rather different that what I ahveheard from others. but I am now on nizoral mold

spray and it is thefirst thing to help.it seems that wiht bacterias you need the exact culture of what it isand the right medicine. it seems from my tests and treatment of moldthat the different molds can all be treeated wiht the same meds? notsure but it seems like that.amy

New Messenger with Voice. Call regular phones from your PC and save big.

July 27, 2006

I've banned this email address from our group.

Chris.

On 27/07/2006, at 8:17 PM, jeniffer anston wrote:

> Hi Friends!

> Sometimes u just cant predict what ur gonna find in ur mail! Just

> opened my mail n guess what? voip !

>

> Check it out

>

> Have fun Guys, i think am gonna love it here, i just hope somebody

> sends me a mail soon!

>

> Join the largest Artificial Life Group on the Internet today

> voipip

>

> __________________________________________________

>

August 15, 2006

[ ] newbie

> Hi Group!

>

> I have just been reading and trying to get answers to my new found

> disease. I have just recently been diagnosed with RA and have started

> taking plaquenil. My question is this....when the flares start up, is

> their any pain medications you find best to work? What about

> excerise? I have read that Tai Chi helps with the range of motion of

> your joints. Does anyone have any thoughts on this? I hate this

> disease and what it does to all of us and our families. Its like I

> lost my old self....I feel like I am living someone elses life and not

> my own. One last question if you dont mind....here goes....does all

> these DMARD's truly help? I know they prevent joint damage, but does

> it finally just not work at all? Thanks in advance to your responses.

>

> Sylvia

>

August 15, 2006

Hi welcome to the group. I was dx with RA and DJD in Oct.2005 am own the

plaquenil, Doxycycline, and enbrel now, after other meds. failed and as for

the pain med, the only one I have found that helped me is endocet, it's the

only one for me that made the pain where I could tolerate it.I have heard

that exercising helps but when it gets bad you just wanna scream, or at

least I did. Have a Blessed day and pain free I hope.

Rhonda