New to list

[Guest guest]

Hi ,

Thanks for the welcome ....And I am enjoying the group...Sometimes we wallow

in our self pity when we have a bad day...But this group proves we are not in

this alone. We all understand each others pain...Kinda a hard thing for one not

afflicted with this disease to understand...But we all do.

, Is the Meth the only thing you take for your RA? I think that sometimes

after being on a certain treatment for RA...You become immune to its benefit.

The daily 5mg of prednisone is what I would love to be able to give up...But

it's almost impossible when you hurt so bad. I've been on low dosages of Pred

since the beginning...My DR. recommended a full body bone scan last year to see

if the Prednisone had caused any Osteoporisis...Luckily the results were good

and I was above normal on the graph sheet. So many things that make us feel

somewhat better is causing problems in other places and organs in our body.

But my spirits are up and my outlook is positive...So we'll all get through

this together.

Hugs,

Gail ( in AL )

[ ] Re: New To List

> Gail, welcome and hello. I am 51 (until next month) and have had

RA for 15 years. I have been on all the I am on Methotrexate and

have been for at least 10 years (?) They have try everything with MX

but with no bennifit, I have joint swelling and am very careful of my

joints.

I have been in Oregon for a week helping my older sister and her

husband pack to move here and over did, so have more swelling the

last couple of days.

I think that I am luck though that I have had this not to fun disease

for that long and have very little damage, a little scary that the

Arthritis drugs don't work to well for me, that is except

methotrexate (27mg a wk). Even the Mx is not working as well as it

did.

Have read some good articles on this site.

Hope you enjoy the group. in WA>

>

>

[Guest guest]

It did me the same way Suzanne! My husband threatened to Duct Tape my

mouth shut! But, after the effect of speeding up my thinking and

mouth... I would vomit. Not " throw up " ... but Vomit profusely!

And it too, did NOT help one iota with pain! It was a joke. As far as I

was concerned.

Susie

Suzanne wrote:

> Alice,

>

> Just my 2 cents.. My pcp prescribed ultram before I was diagnosed.

> This was

> during the time I was in great pain, unable to sleep and begging for

> pain

> medication so I could sleep. Didn't work at all for me. Didn't give

> me one

> iota of relief. The worst thing was that it had an effect on me like a

> diet

> pill! I was all reved up and ready to go! What a horrible night that

> was.

> Didn't sleep a wink, in pain and all reved up. Stupid me, couldn't

> believe

> it was the drug, so I tried it again, same result. Strange, cause one

> of my

> coworkers can take one and sleep for 12 hours. I wish! Would have been

>

> great...

>

> My next try was lortab. It worked a little to dull the pain for a few

> hours,

> but I felt like I was coming down off a two day drunk as the drug wore

> off.

> That was just as horrible in its own way.

>

> Thankfully, I haven't needed anything strong since starting treatment.

>

> Suzanne

>

>

> Re: [ ] New To List

>

>

> In a message dated 6/16/02 12:04:33 PM Central Daylight Time,

> paula54@... writes:

>

>

> > Welcome Gail. I was diagnosed around age 20 and am now 47.

> Currently I

> am

> > on

> > > Enbrel, methotrexate,and vioxx and will be adding minocycline

> starting

> > > tomorrow. I too have a high tolerance to pain and use a hot tub

> for

> pain

> > > relief. Ultram also helps on the bad days. I¹m never without

> pain, but

> > I¹m a

> > > lot better than I used to be.

> > > Hugs,

> > > a

> > >

>

> a, I don't have a prescription for Ultram right now, but have

> used it

> in

> the past. It was almost a " miracle " medication for me. I have severe

>

> Reflux

> disease, causing scar tissue and ulcers in my esophagus. I can't take

> ANY

> aspirin, ibuprofen,

> antiinflammatory medications, etc.... due to the stomach and esophagus

>

> problems. The Ultram was the first non-narcotic medication that I

> could

> tolerate and that worked on the RA and other pain from the Lupus.

> Anybody

> out there that has the stomach problems should ask about the Ultram.

> Just

> putting in my two cents worth -

> Alice

> in

> Texas

>

>

>

>

[Guest guest]

I get very moody with prednisone, become a real witch, as well. I also get

really bad headaches, but it does help with my pain. But what a price!

Hugs,

Carol

Re: [ ] New To List

It did me the same way Suzanne! My husband threatened to Duct Tape my

mouth shut! But, after the effect of speeding up my thinking and

mouth... I would vomit. Not " throw up " ... but Vomit profusely!

And it too, did NOT help one iota with pain! It was a joke. As far as I

was concerned.

Susie

Suzanne wrote:

> Alice,

>

> Just my 2 cents.. My pcp prescribed ultram before I was diagnosed.

> This was

> during the time I was in great pain, unable to sleep and begging for

> pain

> medication so I could sleep. Didn't work at all for me. Didn't give

> me one

> iota of relief. The worst thing was that it had an effect on me like a

> diet

> pill! I was all reved up and ready to go! What a horrible night that

> was.

> Didn't sleep a wink, in pain and all reved up. Stupid me, couldn't

> believe

> it was the drug, so I tried it again, same result. Strange, cause one

> of my

> coworkers can take one and sleep for 12 hours. I wish! Would have been

>

> great...

>

> My next try was lortab. It worked a little to dull the pain for a few

> hours,

> but I felt like I was coming down off a two day drunk as the drug wore

> off.

> That was just as horrible in its own way.

>

> Thankfully, I haven't needed anything strong since starting treatment.

>

> Suzanne

>

>

> Re: [ ] New To List

>

>

> In a message dated 6/16/02 12:04:33 PM Central Daylight Time,

> paula54@... writes:

>

>

> > Welcome Gail. I was diagnosed around age 20 and am now 47.

> Currently I

> am

> > on

> > > Enbrel, methotrexate,and vioxx and will be adding minocycline

> starting

> > > tomorrow. I too have a high tolerance to pain and use a hot tub

> for

> pain

> > > relief. Ultram also helps on the bad days. I¹m never without

> pain, but

> > I¹m a

> > > lot better than I used to be.

> > > Hugs,

> > > a

> > >

>

> a, I don't have a prescription for Ultram right now, but have

> used it

> in

> the past. It was almost a " miracle " medication for me. I have severe

>

> Reflux

> disease, causing scar tissue and ulcers in my esophagus. I can't take

> ANY

> aspirin, ibuprofen,

> antiinflammatory medications, etc.... due to the stomach and esophagus

>

> problems. The Ultram was the first non-narcotic medication that I

> could

> tolerate and that worked on the RA and other pain from the Lupus.

> Anybody

> out there that has the stomach problems should ask about the Ultram.

> Just

> putting in my two cents worth -

> Alice

> in

> Texas

>

>

>

>

[Guest guest]

Carol,

I had just the opposite reaction, aside from the headaches.

The prednisone made me all chatty and euphoric. Really weird. I knew as I

was prattling on that it was the drug, I found it really amusing. I figure,

better euphoria than depressed. And it sure did help with the pain, it

really is a wonder drug in a lot of ways.

Suzanne

Re: [ ] New To List

>

>

> In a message dated 6/16/02 12:04:33 PM Central Daylight Time,

> paula54@... writes:

>

>

> > Welcome Gail. I was diagnosed around age 20 and am now 47.

> Currently I

> am

> > on

> > > Enbrel, methotrexate,and vioxx and will be adding minocycline

> starting

> > > tomorrow. I too have a high tolerance to pain and use a hot tub

> for

> pain

> > > relief. Ultram also helps on the bad days. I¹m never without

> pain, but

> > I¹m a

> > > lot better than I used to be.

> > > Hugs,

> > > a

> > >

>

> a, I don't have a prescription for Ultram right now, but have

> used it

> in

> the past. It was almost a " miracle " medication for me. I have severe

>

> Reflux

> disease, causing scar tissue and ulcers in my esophagus. I can't take

> ANY

> aspirin, ibuprofen,

> antiinflammatory medications, etc.... due to the stomach and esophagus

>

> problems. The Ultram was the first non-narcotic medication that I

> could

> tolerate and that worked on the RA and other pain from the Lupus.

> Anybody

> out there that has the stomach problems should ask about the Ultram.

> Just

> putting in my two cents worth -

> Alice

> in

> Texas

>

>

>

>

[Guest guest]

Gail,

So true! Pain is really impossible to explain to someone who had never

really experienced any. There is no way to make someone understand the

absolute desperation you feel to just make the pain go away, to be able to

get some rest, to be able to do " normal " things. Especially since, as is so

often noted, you otherwise " look " so normal.

Suzanne

> Thanks for the welcome ....And I am enjoying the group...Sometimes we

wallow in our self pity when we have a bad day...But this group proves we

are not in this alone. We all understand each others pain...Kinda a hard

thing for one not afflicted with this disease to understand...But we all do.

[Guest guest]

Gail, I am on methotrexate 27mg injected and 500mg Lodine XL twice a

day for the inflamation. Also folic acid 1mg.

I started out with plaquilnel and it quit working, went to gold shots

and no difference (hated getting those shots), then I was put on

methotrexate (pill form) after the 10 mg didn't work as well they up

the dose to 25 mg, then 30mg,then they added sulfazaladine(SP?),

still no difference, since then I have tried Arava, Enbrel, Remicade

and last but hopeful not least, Kineret. Not any change.

My new doctor put me back on the injections almost 3 mo. ago and it

has not changed. I don't want to us prednisone, that is my last

choice, it scares me. I have had to be on a taper for two different

bad flares. My feet and hands are pretty swollen I have also been on

my feet to much and using my hands alot to help my sister move. It

is hard to type because of my right hand, could be carpel tunnel.

I have a lot of trouble with not being able to do the things I used

to do, like jump right out of a car and walk, now I stand for a while

till my legs decide to work. Have been having trouble with my neck

lately. I have a doctors appt on the 8th of July, so we will see

what he has to say.

Since joining this group and reading the messages and info I am going

to have a lot of questions for the doctor this time. After reading

some of the messages I am not that bad off but then I also have a

high pain tollerance (spelling again?). I know I have to live with

what I have and I just look around and can find someone much worse

off than me.

I wish there was a support group here I could attend but doesn't seem

to be one. I have learned alot form this group though.

Glad you joined the group. in WA>

> > >

[Guest guest]

<< The prednisone made me all chatty and euphoric. Really weird. I knew as I

was prattling on that it was the drug, I found it really amusing.>>

Suzanne, it’s funny you should say that. The first day I took it, I was the

same way! It was after the first day I had the opposite reaction,

depression. Weird stuff. But it can help with the pain.

Hugs,

Carol

Re: [ ] New To List

Carol,

I had just the opposite reaction, aside from the headaches.

The prednisone made me all chatty and euphoric. Really weird. I knew as I

was prattling on that it was the drug, I found it really amusing. I figure,

better euphoria than depressed. And it sure did help with the pain, it

really is a wonder drug in a lot of ways.

Suzanne

Re: [ ] New To List

>

>

> In a message dated 6/16/02 12:04:33 PM Central Daylight Time,

> paula54@... writes:

>

>

> > Welcome Gail. I was diagnosed around age 20 and am now 47.

> Currently I

> am

> > on

> > > Enbrel, methotrexate,and vioxx and will be adding minocycline

> starting

> > > tomorrow. I too have a high tolerance to pain and use a hot tub

> for

> pain

> > > relief. Ultram also helps on the bad days. I¹m never without

> pain, but

> > I¹m a

> > > lot better than I used to be.

> > > Hugs,

> > > a

> > >

>

> a, I don't have a prescription for Ultram right now, but have

> used it

> in

> the past. It was almost a " miracle " medication for me. I have severe

>

> Reflux

> disease, causing scar tissue and ulcers in my esophagus. I can't take

> ANY

> aspirin, ibuprofen,

> antiinflammatory medications, etc.... due to the stomach and esophagus

>

> problems. The Ultram was the first non-narcotic medication that I

> could

> tolerate and that worked on the RA and other pain from the Lupus.

> Anybody

> out there that has the stomach problems should ask about the Ultram.

> Just

> putting in my two cents worth -

> Alice

> in

> Texas

>

>

>

>

[Guest guest]

Prednisone for me makes my mind just race - I will

wake up at night, usually around 3 am and my mind will

be racing and it is very difficult to get back to

sleep. I don't necessarily get chatty though, I get

more intense and focused, and my friends say my sense

of humor lacks when I am on it too! My doctor says

that it is a form of steroid psychosis - the less I am

on it the better for me but it is a necessary evil at

times.

Kathe in CA

Then again, I don't think I have ever answered to so

many posts in one day - maybe it does make me a little

more chatty at least online!

__________________________________________________

[Guest guest]

Hello we just joined the list.

We are Bryce and Ruth living in NE GA in an old house that

has sick happenings. Ruth has MCS. We have been elininating one by

one the numerous items that are present. Her MCS was brought on by

exposure in a school to toxic cleaning in the class rooms halls and

toilets. We discoverd last month that I have a tumor on my arm and

allergic reactions from water in my ears. But likely from some thing

in this old house or the remodeling done. We turned off the gas heat

now use electric units. We have three HEPA filters going 24/7.

All the cleaners and personal products are gone and we use " safe "

stuff. The tumor was biopsied Tuesday and we await results.

We are doing a lot of research on this and hope to share with others

all we can.

Bryce and Ruth

[Guest guest]

Bryce and Ruth,

I'm glad that you were able to find the group. It's great to know

that we are not alone in this struggle.

Bryce, you said you had an allergic reaction from water in your ears?

That is a new symptom to me, can you tell me any more about it? What

has the doctors said so far?

Have you been able to find a good specialist in environmental

medicine? I'm not that familiar with NE Georgia, so I don't know any

local doctors that may be able to help. There may be some out of

state that you could go to.

Hang in there and if there is anything that I can do to help, please

feel free to contact me.

Larkin, Executive Director

Mold Relief, Inc.

www.moldrelief.org

[Guest guest]

Thank You ,

My family doctor said I had an allergic reaction in my ears that was causing all the itching.

She prescribed antihistamine...which did help. It manifests in the ear as a form

of fluid that is water like. Very itchy and I dug at it a lot! Related to Sinuses!

We are working with Dr Tanner in Lawrenceville, GA. She is a member of the

Academy of Environmental Physicians. The only one in GA!

We did a through search of "This Old House" for mold(s) and removed an area of the

utility room where the second floor bath had leaked in previous times.

We did some remodeling in other areas as well but there was no mold(s). We used new

drywall and paints that were low odor and less toxic.....but not as safe as we would now use!

The crawl space was inspected and found to be dry and has plastic on the ground.

Our biggest concern is that the walls, ceiling and floor underlayment are mostly 5/8" thick

chip board from 1950's era. No identified out-gassing....but suspected!

We likely brought in out-gassing materials with 2 x 4's and shelving. Liquid Nails etc!

At present we are using electric heaters to bring the temp up where we need it.

Thus we escape the natural gas and potential out-gassing from heating system areas.

What is this about the HEPA filtration systems and removal of mold spors? We use three

units that effectively filter the air well...overkill in fact. The units are said to remove these

spors over 97% or more...and particles as small as .3microns.

The replacement inserts cost almost as much as the whole unit!

Fortunately? Or ? "This Old House" was a barn and has large beams so the space between

floors and walls is big....this helps air to circulate and it does vent to the outside beyond the

insulation.

We have not given up on it but do feel that a move to a safe® place may be necessary.

Bryce

On Sun, 30 Nov 2003 17:08:17 -0000 " Larkin" <elisa@...> writes:

Bryce and Ruth,I'm glad that you were able to find the group. It's great to knowthat we are not alone in this struggle. Bryce, you said you had an allergic reaction from water in your ears?That is a new symptom to me, can you tell me any more about it? Whathas the doctors said so far? Have you been able to find a good specialist in environmentalmedicine? I'm not that familiar with NE Georgia, so I don't know anylocal doctors that may be able to help. There may be some out ofstate that you could go to. Hang in there and if there is anything that I can do to help, pleasefeel free to contact me. Larkin, Executive DirectorMold Relief, Inc.www.moldrelief.org

[Guest guest]

Dear Barbara,

Thanks for the welcome!

One of the problems of narrowing it down to our home is that we then either

need to do something or decide whether to try to minimize it. Some things are

so permanent and potentially toxic that one needs to move ASAP.

All the obvious stuff is found with inspections and we had two done! But I after

wards found stuff they missed!!!!! And now stuff I missed!!!

I do have a background in building a number of homes, My father was a contractor.

But none of that was real preparation for this insidious ailment of MCS etc.

I loved the smell of fresh cut wood.....spent hours in Dad's millwork shop and ran

a lot of wood through myself. So today when I find even a whiff of wood smell it

sets off a reaction in Ruth. My own tolerance of what I was OK with has now

become a big awareness. My "normal" desensitized nose is becoming sensitive.

Likely from being away from all that! And living in a "cleaner" environment. So

it does affect the so-called "normal" spouses!

Ruth was employed for three months and during that time was affected severely

by the toxic atmosphere there. She was not able to work after that.

We then started a small Tutoring business that remains small since she cannot

sustain many hours. 4 hours a week is a big week!

We are unable to do more remodeling at this time since our funds are exhausted.

We tried to make changes at the school(s) ... they are all affected by deafness!!!

Our major task at present is to get Ruth's environment as safe as we can where

we are!

Education is wonderful...."The more we learn...the more we find to learn!"

We are just a pair of God's Children living on this unfriendly earth!

Bryce and Ruth

On Sun, 30 Nov 2003 11:22:20 -0500 "Barbara Herskovitz" <bherk@...> writes:

Dear Bryce and Ruth,

Welcome to our group. NE Georgia must be nice this time of the year.

Since both of you are experiencing health effects, it sounds like you have wisely narrowed the culprit down to your home. While older homes may be very well constructed they can also suffer from water leaks (especially when dishwashers are added later), leaks around the bath tubs and leaks from an older roof that is not well maintained. These days it would really pay to have an expert who is knowledgeable about mold go over a house before you buy it.

It is good that you have been following the standard protocol of eliminating things one by one from your environment that might be causing your illness. The HEPA filters will help but they will not remove dangerous mold spores or endotoxins. There is a lot of information posted in our archives about how to go about safely remodeling and several of our members are professionals in that field, so feel free to ask questions if you can't find the answers you seek anywhere.

Thank goodness you are wise enough to look for answers and take action before becoming seriously ill with brain damage or permanent health effects. Hopefully Ruth can convince her school to use safer products since children are so much more at risk than we adults.

Sincerely,

BarbaraFAIR USE NOTICE:This site contains copyrighted material the use of which has not always been specifically authorized by the copyright owner. We are making such material available in our efforts to advance understanding of environmental, political, human rights, economic, democracy, scientific, and social justice issues, etc. We believe this constitutes a 'fair use' of any such copyrighted material as provided for in section 107 of the US Copyright Law. In accordance with Title 17 U.S.C. Section 107, the material on this site is distributed without profit to those who have expressed a prior interest in receiving the included information for research and educational purposes. For more information go to: http://www.law.cornell.edu/uscode/17/107.shtml. If you wish to use copyrighted material from this site for purposes of your own that go beyond 'fair use', you must obtain permission from the copyright owner.

[Guest guest]

I have been sick for a year and a half. I have lots of trouble with my right ear. Swelling and fluid when I get around a mold "hit". I now do not hear well from that ear. I havent had any guesses from a doctor as the ones around here run when you say "mold" and 'government "in the same sentence.

Janet

[Guest guest]

Dear Bryce,

The condition in the ears is called Otomycosis (sp). The mold causes over

production of wax in the ears. I know this because I endured it. We went to

an ear specialist who said he knew how to treat it. However, he only knew

how to send a " bill " . It can cause permanent deafness. Since, you are

working with a good doctor (my grandmothers name was Tanner), she may know

of medication that can be put into ear canal to stop the fungus. We have

used home remedies and mine is gone. My husband still suffers. I did have an

article on this condition. If I can find it, I will send it to you. Good

luck and God Bless.

>From: brycervics@...

>Reply-

>

>Subject: Re: [] Re: New to list

>Date: Sun, 30 Nov 2003 17:47:02 -0500

>

>Thank You ,

>My family doctor said I had an allergic reaction in my ears that was

>causing all the itching.

>She prescribed antihistamine...which did help. It manifests in the ear as

>a form

>of fluid that is water like. Very itchy and I dug at it a lot! Related to

>Sinuses!

>We are working with Dr Tanner in Lawrenceville, GA. She is a member

>of the

>Academy of Environmental Physicians. The only one in GA!

>We did a through search of " This Old House " for mold(s) and removed an

>area of the

>utility room where the second floor bath had leaked in previous times.

>We did some remodeling in other areas as well but there was no mold(s).

>We used new

>drywall and paints that were low odor and less toxic.....but not as safe

>as we would now use!

>The crawl space was inspected and found to be dry and has plastic on the

>ground.

>Our biggest concern is that the walls, ceiling and floor underlayment are

>mostly 5/8 " thick

>chip board from 1950's era. No identified out-gassing....but suspected!

>We likely brought in out-gassing materials with 2 x 4's and shelving.

>Liquid Nails etc!

>At present we are using electric heaters to bring the temp up where we

>need it.

>Thus we escape the natural gas and potential out-gassing from heating

>system areas.

>What is this about the HEPA filtration systems and removal of mold spors?

>We use three

>units that effectively filter the air well...overkill in fact. The units

>are said to remove these

>spors over 97% or more...and particles as small as .3microns.

>The replacement inserts cost almost as much as the whole unit!

>Fortunately? Or ? " This Old House " was a barn and has large beams so the

>space between

>floors and walls is big....this helps air to circulate and it does vent

>to the outside beyond the

>insulation.

>We have not given up on it but do feel that a move to a safe® place may

>be necessary.

>

>Bryce

>

>On Sun, 30 Nov 2003 17:08:17 -0000 " Larkin " <elisa@...>

>writes:

>Bryce and Ruth,

>I'm glad that you were able to find the group. It's great to know

>that we are not alone in this struggle.

>Bryce, you said you had an allergic reaction from water in your ears?

>That is a new symptom to me, can you tell me any more about it? What

>has the doctors said so far?

>Have you been able to find a good specialist in environmental

>medicine? I'm not that familiar with NE Georgia, so I don't know any

>local doctors that may be able to help. There may be some out of

>state that you could go to.

>Hang in there and if there is anything that I can do to help, please

>feel free to contact me.

>

> Larkin, Executive Director

>Mold Relief, Inc.

>www.moldrelief.org

_________________________________________________________________

Set yourself up for fun at home! Get tips on home entertainment equipment,

video game reviews, and more here.

http://special.msn.com/home/homeent.armx

[Guest guest]

Thanks !

Appreciate the name of this ichy ear syndrome. Hope you find the remedy for your

husband.

Bryce

On Mon, 01 Dec 2003 15:15:16 +0000 "NANCY GANDEE" <ngandee@...> writes:

Dear Bryce,The condition in the ears is called Otomycosis (sp). The mold causes over production of wax in the ears. I know this because I endured it. We went to an ear specialist who said he knew how to treat it. However, he only knew how to send a "bill". It can cause permanent deafness. Since, you are working with a good doctor (my grandmothers name was Tanner), she may know of medication that can be put into ear canal to stop the fungus. We have used home remedies and mine is gone. My husband still suffers. I did have an article on this condition. If I can find it, I will send it to you. Good luck and God Bless.