Re: Help for New Member

[Guest guest]

In a message dated 1/11/00 8:11:25 AM Central Standard Time,

mousepotatoes@... writes:

<< How long is your face red, days, hours??

Also are you on antibiotics right now??

The breathing difficulty may be a side effect of a drug you are taking. Go

to a site for drugs and look up the side effects on all meds you are on.

Think back to what you were taking and how you felt.

Oh and as for the last two years....I'm sorry you've been in such limbo. I

can understand how frustrating it is to be sick and have everyone around

you sluff it off as no big deal. Keep bugging the doctors and don't back

down. They are only people and they need your persistence to push them into

finding out what is wrong with you.

When you get all of your tests back let us know what they say. Get a copy

of your bloodwork so you have it to discuss and compare at a later date.

Unfortunately you have to be your own sleuth these days.

Donna

Ottawa, Canada

Scleroderma, Jan.95, AP Oct.97

(My Story)http:// www3.sympatico.ca/mousepotatoes

>>

Hi Donna

Thanks for your answer...My face gets red at various times...It gets sooo red

it is embarassing as it looks like i may have just ran a 20 mile marathon but

i havent. I get it sometimes when i am walking and i get it sometimes when i

am just sitting down. It is the weirdest thing. I have gotten it on every

drug i have been on and even when i wasnt on any drugs...I also have the

breathing problems without being on a single drug. The doctor told me that in

rare cases RA can attack the lungs and so he is looking into that. I

completely have learned that I will have to PUSH PUSH PUSH my doctors and

healthcare people to help me and i know now i have to document EVERYTHING!

I was wondering if any of you have the difficulty sleeping at night. It seems

that when i try to lie down and let my body relax-my joints and muscles begin

to ache even more..They throb and I also get muscle spasms. Do any of you

experience this?

Thanks again for answering

[Guest guest]

How long is your face red, days, hours??

Also are you on antibiotics right now??

The breathing difficulty may be a side effect of a drug you are taking. Go

to a site for drugs and look up the side effects on all meds you are on.

Think back to what you were taking and how you felt.

Oh and as for the last two years....I'm sorry you've been in such limbo. I

can understand how frustrating it is to be sick and have everyone around

you sluff it off as no big deal. Keep bugging the doctors and don't back

down. They are only people and they need your persistence to push them into

finding out what is wrong with you.

When you get all of your tests back let us know what they say. Get a copy

of your bloodwork so you have it to discuss and compare at a later date.

Unfortunately you have to be your own sleuth these days.

Donna

Ottawa, Canada

Scleroderma, Jan.95, AP Oct.97

(My Story)http:// www3.sympatico.ca/mousepotatoes

rheumatic Help for New Member

>From: Babs56p@...

>

>Hi Group: I've received e-mails from a new member who needs help. If

anyone

>can give additional feedback and support, I know she'd appreciate it

>very much. Thanks so much.

>Babs

>

>Hi Babs

>

>Thanks for the information. I am on Vioxx and tylenol for arthritis right

>now. My previous doctors had me on prednisone a while back but i got no

>relief from it. Friday was my first diagnosis and before he starts me on

any

>other meds he wants to wait until xrays of my chest, knees and feet come

>back. He also did some type of liver blood test. I go back in a week from

>tommorrow to find out what meds and what else is exactly wrong with me. I

>have had breathing difficulties for quite some time and it doesnt seem to

be

>asthma or anything like that as they originally thought. I have been sick

for

>over 2 years with fever, breathing difficulties, swelling, achiness all

over.

>About 6 months ago i began to get the morning stiffness that lasted about a

>hour and then about two months ago i began to get the pain and aches in my

>joints really bad. Almost to the point of not being able to walk. I have

>difficulty typing at this moment. It really affects my knees, hips, elbows

>and fingers and occasionally my feet. Honestly it seems to be spreading

>everywhere. I have been going to doctors for the past two years and they

all

>seemed to want to blame it on a viral or bacterial infection that was hard

to

>clear up and i knew it had to be more. I just wasnt getting better. I

finally

>had watched a Good Morning America show about Lupus and i asked my doctor

if

>he thought i had it-he looked at me like i was crazy but went ahead and

>tested me. I thought i had Lupus because my face also breaks out in a red

>rash really bad. The tests came back-the ANA test for Lupus was negative

but

>the RF test came back as positive for the rheumatoid factor. It wasnt until

>then that my doctor actually tried to help me...It took this long...I hear

of

>so many even having it to take longer and that is a shame.

>

>I really have questions about if you or anyone you know who has RA if they

>ever have lung or breathing problems and if you or anyone has had any

>problems filing for long term disability with their work or for Social

>Security Disability. I am on short term right now and will have to do both.

I

>tried working three different times during my illness and i just got so

worn

>out and could not keep going. Also, I was afraid of losing my job if i kept

>coming to work sick or missing days of work so i knew i was better to be on

>short term disability where i can still have my benefits but get the rest

my

>body needs. Also, have you heard of anybody having their face turn red

with

>a flare up? Any help would be appreciated. Thanks again for the links

>etc...and for responding.

>

>

>

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

[Guest guest]

Oh Liz

I cant tell you how nice it was to hear from you and here what you had to

say. Boy it sounds like you have or had lots of the same problems as i....I

have the sleeping problems as well and it does seem that it gets worse as i

lie down and try to rest. My doctor is testing me for vasculitis as

well.....It was one of the first things he thought of. Do you ever have a

problem where it looks like your blood vessels are swelling so big that they

are 2-3 times their normal size? I can see this happening in some areas of my

hands. I would love to hear what your doctor says about the rash on the face

as well..Mine is not really a rash or bumpy like it is more like my face

turns red as a tomato and it is VERY noticeable...esp on my forehead and

around my eyes. Please let me know what he tells you....

Sleeping is a BIG problem for me because now i am not only just in pain but i

also cant sleep.....I mean i get about 2-3 hours of sleep a day on a good day.

As far as SSDI, i have filed for it...I have heard that everyone usually gets

denied the first time. I expect that. My problem is the employer that i was

with for 11 years offers short term disability for 6 months and then long

term disability after that. These are benefits we get with my job. My last

day of short term which is paid by my employer was 10/4/99 and long term was

supposed to kick in after that and that is paid by the long term insurance

company described in my benefits as a employee. The Long Term Disability

insurance company still has not paid me yet and is taking their sweet time

and i dont get a lot of cooperation with them...They just keep telling me

they are reviewing my claim. I have not been denied or anything-they just are

taking their sweet time and i dont hear from them unless i call. I was hoping

if you or anyone else has had this problem with their long term disability

insurance company? I am a single mom and for the last 3 months have not

brought any income into the household because we are waiting to get the long

term to kick in. I am living off of savings right now but that will only go

so far. If any of you have had similar situations or can give advice-please

let me know.......

I have began to read those books and look forward to hearing from you again.

Thank you so much for easing my mind some.

[Guest guest]

,

You might want to take a look at the lupus and RA tables I posted in the

shared files section of OneList.

/files/rheumatic/. I'm not sure that just because you

had a negative ANA that that rules out Lupus entirely - perhaps Dr.Chiu

could comment on that. If you are unable to view the files (.pdf type

files), let me know and I'll help you.

Mark

rheumatic Help for New Member

> From: Babs56p@...

>

> Hi Group: I've received e-mails from a new member who needs help. If

anyone

> can give additional feedback and support, I know she'd appreciate it

> very much. Thanks so much.

> Babs

>

> Hi Babs

>

> Thanks for the information. I am on Vioxx and tylenol for arthritis right

> now. My previous doctors had me on prednisone a while back but i got no

> relief from it. Friday was my first diagnosis and before he starts me on

any

> other meds he wants to wait until xrays of my chest, knees and feet come

> back. He also did some type of liver blood test. I go back in a week from

> tommorrow to find out what meds and what else is exactly wrong with me. I

> have had breathing difficulties for quite some time and it doesnt seem to

be

> asthma or anything like that as they originally thought. I have been sick

for

> over 2 years with fever, breathing difficulties, swelling, achiness all

over.

> About 6 months ago i began to get the morning stiffness that lasted about

a

> hour and then about two months ago i began to get the pain and aches in my

> joints really bad. Almost to the point of not being able to walk. I have

> difficulty typing at this moment. It really affects my knees, hips, elbows

> and fingers and occasionally my feet. Honestly it seems to be spreading

> everywhere. I have been going to doctors for the past two years and they

all

> seemed to want to blame it on a viral or bacterial infection that was hard

to

> clear up and i knew it had to be more. I just wasnt getting better. I

finally

> had watched a Good Morning America show about Lupus and i asked my doctor

if

> he thought i had it-he looked at me like i was crazy but went ahead and

> tested me. I thought i had Lupus because my face also breaks out in a red

> rash really bad. The tests came back-the ANA test for Lupus was negative

but

> the RF test came back as positive for the rheumatoid factor. It wasnt

until

> then that my doctor actually tried to help me...It took this long...I hear

of

> so many even having it to take longer and that is a shame.

>

> I really have questions about if you or anyone you know who has RA if they

> ever have lung or breathing problems and if you or anyone has had any

> problems filing for long term disability with their work or for Social

> Security Disability. I am on short term right now and will have to do

both. I

> tried working three different times during my illness and i just got so

worn

> out and could not keep going. Also, I was afraid of losing my job if i

kept

> coming to work sick or missing days of work so i knew i was better to be

on

> short term disability where i can still have my benefits but get the rest

my

> body needs. Also, have you heard of anybody having their face turn red

with

> a flare up? Any help would be appreciated. Thanks again for the links

> etc...and for responding.

>

>

>

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

[Guest guest]

Hi , My heart goes out to you. It sounds like you are at a point I was

at years ago, and I know how frightening and frustrating it can be.

Yes, RA can cause lung problems. I had a run of lung problems years ago,

long before I had a RA diagnosis, and in retrospect believe it was related.

I think there is info on complications like this at www.rheumatology.org

the website of the American College of Rheumatology. It is a good site for

general info on the disease, but personally I am reluctant to try the more

commonnly used medications they recommend for RA. I have young children, and

feel it is best for me to go with the meds that have least side effects for

now. I have been on antibiotic treatment for about 2 years with some real

improvements--less fatigue, less sleep disturbance, less depression, less

pain, and while some joints are more swollen that before, the number of

active joints has gone down from around 20 to just a few.

I got a rash only recently, since I saw my doctor a couple of weeks ago,

actually it is more like a ruddiness on the face. I will ask my doctor

about it this week, and let you know if I get any info on it. Inflammation

of blood vessels can cause rashes with RA and other rheumatic diseases, I

know, usually a sign of vasculitis, so you need to ask your doctor to

evaluate for that. I think if it is suspected they do a biopsy of blood

vessel tissue, and the treatment is usually steroids, according to what I

have read.

At times I found the pain was worse for me after lying down for the night.

It seemed just to be accumulated effects of swelliing from the day's

efforts. Also, you learn to tune it out a little in order to function, and

at night when you let your guard down it is more evident. It always amazes

me when I break down once in awhile and take a pain pill, how much pain was

there that I was tuning out. The disease process itself can cause sleep

problems too, not only the pain. This has been the greatest challenge for

me to deal with, I have had sleep disturbance since childhood...But.....I am

happy to be able to tell you that since about two months into antibiotic

treatment, my sleep improved greatly, and consequently my fatigue level is

improved. If it did nothing else for me, this alone would make it worth

taking the antibiotics. I think B-vitamin supplementation helped me with

fatigue too. I also get the muscle spasms, mostly at night, but sometimes

while sittiing to work. I take a dose of Soma (muscle relaxer) at bedtime,

and it has helped a lot with those. Getting enough minerals helps too,

calcium, magnesium, potassium--talk to your doctor about vitamins and

supplements that might be of help to you with the fatigue and muscle cramps

and read the doctors' recommendations on the rheumatic website. I, like

yourself, have lost or had to quit many jobs due to getting beaten down by

the illness. Now I am able to work a couple of hours a day, part-time from

home again for the first time in years. So, do not give up hope, as I did

for many years.

I have been through the disability process myself, but before I got a RA

diagnosis. I had inadequate health care for years, due to losing work and

insurance, so I did not get diagnosed correctly for a long time. I think it

will be easier for you since you are in the diagnostic process already. For

me it took a year and an attorney. Some points to keep in mind are, if you

can forsee not being able to work for over a year, get on the claim right

now--are you in the US, and looking at Social Security disability?--if so,

file now, as the process can be long and most are denied on the first

go-round. Make sure your doctor documents how the illness affects your

functioning and reliability as an employee, make sure all the medical

records get to the Soc. Sec. office.... make sure the doctor knows and uses

the correct codes for the disease on the papers.....I probably can think of

more tips and direct you to more sites for information if you have specific

questions.

Sorry for going on so long, I'll curb my mouth (fingers?) and end for

now. If you want to chat more, feel free to write me anytime. A big,

gentle hug for you--{{{{{{{{{{{}}}}}}}}}} Best wishes, Liz G

PS Have you read " The Road Back " or " The New Arthritis Breakthrough "

yet?--books on the antibiotic treatment--you might want to, they inspired a

lot of hope in me, and hope helps us heal.

[Guest guest]

,

Can totally relate to what you're going through because I'm going

through the exact same thing, right down to being a divorced mom with 2

kids to support and no income while this all gets resolved. Pretty

scary, huh? I had an additional complication in that my gp was asked to

fill out a set of forms and kept giving me the runaround until I finally

brought my sister with me as a witness to an appointment. At that

point, my gp said he doesn't believe in disability (huh?) so he didn't

want to fill out any forms. I think he really doesn't want to have to

bother with a patient who involves paperwork. Anyway, I just got the

completed forms back today from my rheum, who said he'd fill them out

when my gp balked. I've submitted them to the insurance company so

we'll see what happens. I'd suggest you continue to bug the insurance

company and ask them just what is holding up the claim. Ask if there is

anything missing from the file and if not, how much longer will it be

before a decision will be made. Make sure they know you are the sole

support for your family and that they are causing you undue stress with

the delay, which can aggravate your illness. If all else fails, you can

also hire a lawyer who specializes in disability claims, which usually

will resolve things quite quickly (at least it does in Canada), however,

the lawyer will cost you a few dollars that you probably can't spare.

Good luck and I hope your claim is processed soon, I know how difficult

a situation this is to deal with.

Hugs,

a Peden

OSMONDDOLL@... wrote:

>

> My problem is the employer that i was

> with for 11 years offers short term disability for 6 months and then long

> term disability after that. These are benefits we get with my job. My last

> day of short term which is paid by my employer was 10/4/99 and long term was

> supposed to kick in after that and that is paid by the long term insurance

> company described in my benefits as a employee. The Long Term Disability

> insurance company still has not paid me yet and is taking their sweet time

> and i dont get a lot of cooperation with them...They just keep telling me

> they are reviewing my claim. I have not been denied or anything-they just are

> taking their sweet time and i dont hear from them unless i call. I was hoping

> if you or anyone else has had this problem with their long term disability

> insurance company? I am a single mom and for the last 3 months have not

> brought any income into the household because we are waiting to get the long

> term to kick in. I am living off of savings right now but that will only go

> so far. If any of you have had similar situations or can give advice-please

> let me know.......

>

>

>

>

[Guest guest]

, a has already answered your question well, I would only add

that if you are in the US, a call or letter to your state insurance

comissioner might be in order too. You might also check with the insurance

carrier to see if they have received all your medical records. Sometimes

doctors' staffs drag their heels sending them because they get busy,

mountains of paperwork involved in health care today, eh?

Keep at them, document all the times you called, who you spoke to, what

they said..geez, it would almost be easier to work at the job, wouldn't it?

#; ) I've never dealt with the long term disability from a job, because by

the time it was obvious that I couldn't hold down a full-time job for very

long, I had been working part-time, contract jobs that didn't come with this

kind of coverage, so these are just general tips that apply to all kinds of

disability claims. Hope this helps, Liz G

[Guest guest]

I can only speak for US but with regular social security or medicaid

disability it isnt up to your doctor no matter what he makes you think.

It is up to the social security doctors who consider all your medical

records. If a doctor refuses to cooperate, social security will subpeona

him. They also will send you to their own doctors for different checkups

and pay for it if you are low income

[Guest guest]

,

I never got sent to a doctor for Social Security. They took my doctor's

word for it after 2yrs!!!!!!

jan

SC wrote:

>

> From: SC <sasc@...>

>

> I can only speak for US but with regular social security or medicaid

> disability it isnt up to your doctor no matter what he makes you think.

> It is up to the social security doctors who consider all your medical

> records. If a doctor refuses to cooperate, social security will subpeona

> him. They also will send you to their own doctors for different checkups

> and pay for it if you are low income

>

>

>

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

[Guest guest]

I was sent to three doctors by them. And all of them were on the other

side of the state and I had to get someone to take me to them. At the

time I didnt even know that I had arthritis. Dumb huh. My lungs and

asthma were so bad that I couldnt stand more than a few minutes. I

originally signed up for it because I had severely injured my back and

thought it would be a temporary thing. I found out that I had asthma so

bad during the time I was waiting on social security. The two illnesses

just happened to both hit the breaking point at the same time.

But if a doctor wont cooperate just because he doesnt believe in

disability it doesnt hold with them. They have doctors who look over all

the existing medical records and send you for more if they dont have

enough or as in my case I didnt fit any existing catagory and didnt even

know what was wrong.

incidently the first of their own doctors they sent me to, said I could

no prolonged work of any kind including riding in vehicle (in Arkansas

people travel more miles to get to a job than any other state, so

statistics say) Regardless of what their doctor said I had to go through

three reviews and up before the judge. It took exactly one year.

They have set critieria that if you fit in, you get it easily. If you

dont fit the catagory it is harder and takes longer. Also when you are

50 or over, in their own words, " you are rapidly approaching old age and

considered untrainable for another job " . If you have worked in a

certain field that you trained for, all your life, they wont expect you

to learn something else either.

The arthritis foundation has a free booklet on social security

disability for arthritis. They say it often takes people with arthritis

several years or more to get it. You can send for the booklet from their

website if you want. Social security office also has booklets that

explain the process and different appeal stages.

[Guest guest]

If you DO have candida, you may also want to take oregano oil (I have to take it

in 1/2 teaspoon of unsweetened apple sauce because it's very strong-tasting),

grapefruit seed extract, goldenseal (I use the bulk herb, add 1/3 teaspoon to

hot water to make a tea), and high doses (several grams) of vitamin C powder (I

use the buffered version, rather than the straight ascorbic acid). These will

help to control symptoms.

As for determining IF you have candida, I'm sure you'll get other suggestions,

but you may want to visit this site http://www.candidapage.com/

Also, log on to groups and check the files for this group, there's plenty

of information there pertaining to your questions.

my 2 cents...

bill

Bill Asenjo, PhD, CRC

Consultant: www.billasenjo.com

The Write Way www.asenjo-writer.com

basenjo@...

(P/F) 319-351-1528

" Good judgment comes from experience, and experience comes from bad judgment. "

Mark Twain

help for new member

Hello,

I am a new member of this group from toronto..

I am under the depression, and CFS etc. almost 3 years

I am taking celexa and time to time xanax if I need,

I didn't know what is happening to me. last month

I read about candidasis after long research.

I have many amalgams in my mouth and I was eating only

charb and sugar when I was growing up,

and got many antibioyics in my teenager years...

and I was feeling hypoglycemia, dizzy,foggy brain mostly.

sure my doc doesn't understand anythink...(still this way)

to day I bought caprylic acid, and will try it...!

my question is, does rice protein cause candida growth ?

does lechitine couse too ?

and what can I use, except caprylic acid ?

or how can I know do I have really candida problem or not ?

are there any blood test, or faeces test ?

Thanks for your advices.