help

[Guest guest]

Hi again,

Since I am so new I guess I do not understand. I don't know what Sed rates are

supposed to be. He did say something about 260 Rheumatoid factor when normal

was 20 something?? I think. My family doctor diagnosed me with RA and sent me

to this doctor. He is a Rheumatoligist. I have stiffness in both hands...feels

like they have fossilized during the night. I run hot water over them to try

to get them to move without so much pain. My wrists hurt...the bottom of both

feet (feels as if I am walking on bones) and the back of my neck. Somethines

my knees hurt when I climb stairs but that is not bad. It does affect bothe

sides at the same time but sometimes a little worse on the left side.

What is a AP Rheumie? What is start on AP? What type tests should have been

done? How do you go about finding a doctor? I hate to be so dumb........

[Guest guest]

Hi :

The information that I have read in the past , said that MSM worked real

well with emphysema. I take 1 tsp 2X a day. Cant hurt.

HTH Al R.

Original Message -----

From: arjay <arjay@...>

<rheumaticonelist>

Sent: Wednesday, March 03, 1999 3:13 PM

Subject: rheumatic help

>From: arjay <arjay@...>

>

>Hi All

>

>My sister has severe emphysema and somewhere, I think it was here or on

>one of the sites given here. I read about some vitamin or herb, but I

>think it was a vitamin, that really helped. I remembered thinking I had

>to tell Dot, then brain fog attacked and I can't remember what it is or

>where I found it. If anyone read this could they please let me know.

>

>Thank you

>

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

>We have a new web site!

>

>Onelist: The leading provider of free email community services

[Guest guest]

Dear a - When I first started antibiotics 8 mths ago I experienced the

same things tearfulness, exhaustion and and also mega grumpiness.It

gradually went away. I put it down to two things - the physical adjustment

and changes my body had to make and the emotional investment I had in the

treatment.The AP is a new regime and it takes time to adjust to and learn

your patterns. I found keeping a journal invaluable. Have you considered

lowering your dose so you can ease into it. I have only just reached the

dose you are on after 8 mths and the latest round of increases brought back

some night sweats and soreness. Overall though I have had a lot of

improvement. It sounds like you are herxing especially if you are getting

your worst times at the end of the week. Here are some special hugs for you.

oooo.

Luv - Barbara

At 13:35 17-03-1999 -0700, you wrote:

>From: a Peden <paula.peden@...>

>

>I need help with 2 problems, one for me and one for my mom. I'd appreciate

>any and all comments.

>

>My problem is that I've been steadily falling apart for more than a month

>now and I desperately need reassurance that I'm having a herx rather than a

>flare. Some history to help you experts out there -- I was diagnosed with

>

[Guest guest]

a Peden wrote:

>

> From: a Peden <paula.peden@...>

>

> I need help with 2 problems, one for me and one for my mom.

>

> My problem is that I've been steadily falling apart for more than a month

> now and I desperately need reassurance that I'm having a herx rather than a

> flare. Some history to help you experts out there -- I was diagnosed with

> RA in August/98, began Plaquenil 400mg/day in Oct/98, started AP Dec./98

> (100 mg. Minocin 2X MWF) along with adding acidophilus 2 caps 2X daily. I

> was in terrible shape when I started the AP so I don't know if I had a herx

> at that point because I already felt so awful. I very slowly started

> improving after starting the AP, pretty much without incidence except

> initial dizziness. In late January, I developed a yeast infection, treated

> it with Canestan, which cleared it up. Shortly after this, I began getting

> extremely sick every Saturday night (no, I wasn't partying or anything fun

> like that) with what I now believe are the symptoms of leaky gut syndrome

> (this condition really needs a more elegant name). This progressed during

> February to the point where I was sick at least every other day and was

> often up most nights with stomach pain. During this period, I was losing

> weight fast and my RA was slowly getting worse. You folks came to the

> rescue with the idea to take olive leaf and slippery elm to combat the

> leaky gut thing. I started that about 2 1/2 weeks ago and it definitely

> seems to be getting better, however, my RA is still bad or worse. My

> theory, which I'm desperately trying to cling to, is that when I developed

> the leaky gut, I wasn't absorbing anything properly, including meds. Now

> that I seem to have that under control, I am absorbing the medication

> better and my system is reacting like there's been a medication adjustment

> by having a herx.

The worsening of symptoms is probably the result of the leaky gut. Once

the gut is healed it should better handle all the toxins in it - the

result should then reduce severity of the flare and eventually quiet it

altogether - until the next one. As therapy progresses, flares reduce

in intensity and are spaced farther apart until the patient reaches

remission.

Am I nuts or is this logical? I have been feeling

> absolutely awful with pain everywhere (last Thursday and Friday, it was

> even in my breastbone so bad that it was excruciating to just breath),

> tremendous fatigue and I keep bursting into tears without even a Hallmark

> commercial to set me off. I wake up 20 times a night and while I can't say

> I have night sweats where I wake up drenched, I do feel kind of clammy all

> night. So, please, everyone, give me your diagnosis -- herx or flare? I

> can put up with anything if it's a herx and I'm getting better but I'm

> concerned if it's a flare and I just sit and take it, I'm letting damage

> occur.

It's important that you work at reducing inflammation. If you will

refer to Dr. 's article on controlling pain in her protocol, you

will find many suggestions to try. http://www.rheumatic.org/martin.htm

If it's any encouragement, I started this therapy in a tremendous flare

that left me unable to do anything. For about fourteen months I

gradually worsened but then I began to see a faint light at the end of

the tunnel. At 22 months, all symptoms left, but it took 4-1/2 years for

labs to return to normal. For others, the reverse is true.

Ethel

[Guest guest]

In a message dated 5/9/99 10:31:31 PM Eastern Daylight Time,

75014.3010@... writes:

<< I and my familie will be

very happy and thankfull to hear your advise. >>

Dear Dilfusa,

I am too new at this antibiotic therapy and I do not totally understand your

sisters disease so all I can do is pray for her. I have lifted her up to our

Heavenly Father and pray His marvelous grace will heal her and comfort her.

I am even now weeping for her as I know the pain she is enduring. We all

know the pain, but most of us have not suffered as much as she has.

I hope someone from our Group can help you more and give you courage. Surely

there are answers for her.

Tell your sister that many will be praying for her. I know that for sure.

Anita

[Guest guest]

Dear Chrys,

We have sent information to Nargizar for her sister. I hope they can find a

doctor there to follow up on the therapy. This is a very sad story to hear.

Chris.

>From: Chrys <75014.3010@...>

>

>I received this letter the other day. Can anyone help this poor girl?

>

>Sender: nargizar@...

>Received: from web905.mail. (web905.mail. [128.11.23.80])

> by hpamgaab.compuserve.com (8.8.8/8.8.8/HP-1.4) with SMTP id

>NAA17783

> for <75014.3010@...>; Thu, 6 May 1999 13:25:07 -0400

>(EDT)

>Message-ID: <19990506172521.25143.rocketmail@...>

>Received: from [193.175.155.45] by web905.mail.; Thu, 06 May 1999

>10:25:21 PDT

>Date: Thu, 6 May 1999 10:25:21 -0700 (PDT)

>From: Nargiza Rustam <nargizar@...>

>Subject: Can you give me advice ?

>Chrys <75014.3010@...>

>MIME-Version: 1.0

>Content-Type: text/plain; charset=us-ascii

>

>Dear Chrys,

>First of all, I want to tell about myself. I am Dilfusa and I am from

>Uzbekistan, Tashkent . Now I study in Germany, I have sister Nargiza,

>she has been suffering from ChronicPolyartrit since 12 year ago. She is

>29 year old and live in Tashkent now.In Uzbeksitan she was in many

>Hospital long time, but this teraphy doesn´t help her. After that I

>tried long times to contact with people Who have the same diseases

>also and to have some advices for helping her. I read in Internet

>Reumatic homepage many information also.I hope you are familiar with

>the health problem of my sister.I want to tell you a little about her

>health problem. Maybe you can help me with your advise. Internet is my

>last chance because we have tried all possibilities but it did not make

>my sister health better.

>At the age of 18 she got fever and it getting worse and worse. Her

>walking ability was getting poorer and poorer. We took her to the

>hospital. There she had to take lots of antibiotics but it did not make

>her better. She was getting thinner. Every two months she had to go to

>the hospital for inspection.

>After 2 years suffering from the disease (20 year old) she had to stay

>at the hospitral because the whole part of her body was painfull, pain

>at all joints and even could hardly move. The fever also was still

>there. She was operated for blood cancer test but the result was

>negative. She has no leukimia. She could only take medicine. Lots of

>medicine. Her blood had also tobe cleaned (washed). She had to stay 6

>months at the hospital. Doctor had done all the possibilities to make

>her better, In this time we thought that she did not have chance to

>live because her body was smaller and smaller. One of her lung (right)

>was found invalid and it filled with liquid and had to be taken out

>using kateter for three months. Then the lung had to be operated to

>take out the liquid inside.

>After that doctors couldn´t identify the deseases, therefor she was in

>many Hospitals to identify her deseases. In every Hospital she got

>infections, and we were busy to handel the infection

>and doctor didn´t pay more attention on her main deseases , After that

>the Reuma was getting worse . When all infection was dissapeared then

>all her joints were swollen, and the joints began to deform . Her knee

>was swollen, bigger and much liquid in the join, very painfull.The

>liquid had to be taken our regularly every 2 months. Every 6 months had

>to go to the hospital to take out the liquid. At the age of 23, time

>after time all joins could not be moved anymore because it was very

>painfull. Age 24 we were told that she have Rheumatoid poly arthrid,

>pulmarit, neorit and kahepsia and had to go again to the hospital.

>Totaly could not walk. All finger joins were unstable and can be moved

>to all directions. She took many Kenalog and Pregnisalon. At 26 of age

>she stopped taking Pregnisalon. But still could not move. All joins

>contain much liquid. After taking out the liquid then the knee and

>elbow joins became " dry " and " connected " . She cannot move her knee and

>elbow. As a result the joins can not be bend. First it occured at the

>knee join, then elbow join. Now she has been complaining about her

>backbone and neck. She is able to speak but can not open her mouth too

>wide. The eyes getting worse because hardly see the sunlight, tears

>flow always. We have tried to give some medicine for her eyes but it

>did not work.The eyes was chronic also and antibiotic didn´t work

>anymore.

>She has problem also with her listening ability. The ear was operated

>and cleaned ,but sometimes it hurts also. Fortunatelly she can still

>eat food.

>Can you try to understand my sisters health problem and to advice us.

>We will be doing all your advice. I am hoping also that you have an

>idea about the antibiotic effect on her colon. I and my familie will be

>very happy and thankfull to hear your advise.

>Best Regards

>Dilfusa Rustam

>

>

>_________________________________________________________

>

[Guest guest]

Hi ,

Lupus patients can benefit from the same protocol used for RA. Doxycycline

is recommended for lupus patients, 100-200mg on Monday Wednesday and

Fridays. The secondary fibromyalgia your friend is experiencing often

improves along with the lupus with time on the antibiotic.

The same diet and supplements are needed as we discuss for the other

rheumatic diseases. Perhaps you could print out our FAQ at

www.rheumatic.org/faq.htm and Dr. 's clinic notes at

www.rheumatic.org/martin.htm for your friend? Also the medical histories

of lupus patients on our web page - everyone has given their email address

or telephone number so that they can help others. We also have other

contacts if your friend would like them.

Seeing Dr. Franco would be the best thing she could do.

Chris.

>

> Hello group,

> Can anyone send me any information on your experiences with that

> ofantibioitics and Lupus? A staff member at our school has Lupus and

> fibromyalgia and is sooo tired and fatigued. She is such a wonder with

> children and I would hate to see her have to leave the profession.

> Since she has seen my wonderful progress with the antibioitcs and my RA

> she is tempted to see Dr. Franco but would love some info from you guys

> first. Any thing you know or have experienced would be sos appreicaited!

>

>

>

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

> Star Wars fans are using ONElist to share the fun.

> http://www.ONElist.com

> Are you?

>

[Guest guest]

>From: " Suriyong Rojnavibul " <bear@...>

><anon_emouse@...>

>Subject: Help

>Date: Sat, 24 Apr 1999 11:24:35 +1000

>

>Dear Dr Graham Chiu,

>

>My name is Sue Roj from Sydney Australia, and was diagnosed with a very

>aggressive form of Diffuse Scleroderma in Dec 98. My rheumatologist has

>suggested that we try out the antibiotic therapy as well the conventional

>prednisone and cytoxan (cyclophosamide). I'll start off with the antibiotic

>first (IV for 5 days), followed by a prednisone IV, then cytoxan IV on the

>8th day.

Hi,

I only go to this email address once a month to delete all the spam. This

is not my usual address, and all questions need to be posted to the news

group.

Who is your rheumatologist?

>

>In your experience, is there going to be any problem with using cytoxan and

>antibiotics at the same time ? I noticed that in the write up (Frequently

>asked questions about antibiotic therapy), it is against using methotrexate

>and antibiotics together.

I don't use cyclophosphamide so can't comment from experience. However, you

won't be able to get most rheumatologists to treat you without offering

cyclophosphamide.

I have some on methotrexate and have not noticed any problems.

>

>After the first 5 daily IV, should I go onto the oral form, or should I

>continue to have IV every week ? If the latter, then for how long ?

Weekly IV is best - until you're in remission.

>

>The article also talked about the microplasma blood tests, can you please

>tell me the exact organisms to test for, so I can pass it onto my doctor ?

Mycoplasma species. There's a lab in Adelaide that does the PCR required.

>If they don't exist in my blood at the moment, is there ant point in going

>ahead with the antibiotics therapy ?

>

Yes, as the blood tests can turn positive as you kill the bugs off.

>I would appreciate any info you can give me.

>

>Much thanks ... Sue Roj

>

[Guest guest]

I do believe that pear juice is a stool softener. I've also read that children

under 5 should only get 6-8 ounces of juice per day, while older children can

have 10-12 ounces. So, if your son is getting 4-5 cups, that is probably the

problem.

Jen

[Guest guest]

Hi,

I would definitely get another speech opinion if possible and with

someone familiar with apraxia.

I would also make an appointment with a developmental pediatrician. I

did not do this until after my son entered the pre-school program. It

made it a little harder to get the additional therapies in place

since the original IEP was in place.

With the developmental pediatricians evaluation I felt like all

issues were being addressed. Up until that point 2 pediatricians and

a neurologist never even mentioned low tone. A Children's Hospital

would be a good place to start to find one.

Good Luck

denise

> My daughter will be 3 in May. We are fixing to start the transition

> from EI to Pre-school. She has been seeing a ST with EI for about

3

> months now due to fact her pediatrician wouldn't refer her to a SP.

> Also because of medicaid regulations, I just had to change her

> pediatrician from the one she's seen since birth.(ok with me) My

> question is this. She has never been assessed by any Dr. as to the

> origin of her speech problem, due to the fact her pediatrician then

> just thought it was speech delay. Should someone do some kind of

> evals on her besides these SP's that work for the state. Her EI

> therapist hadn't even worked with apraxia before

[Guest guest]

Got it

[Guest guest]

I got your post June...Have a nice day...Judy in AZ

[Guest guest]

i felt the same way this past week kathy in il

[Guest guest]

June,

Yes, I have received this post. How are you doing?

Debs in FL

[Guest guest]

Sorry to hear about what you are going through, Bob, but welcome to the

group. What medications are you currently on? Why are you losing your

insurance?

[ ] help

> hi:

> last week i sent an email to an individual memeber of this group in

hopes of a response. received none.

> i'm hoping someone will receive this, and respond. i was diagnosed

with RA early last year, and am currently bombarding my system with

drugs, and i'm still doing downhill. not looking for a miracle cure,

just maybe some information from someone who is about the same stage as

i, and who has had some success with treatment. it has now come to the

point where my life, my happiness, and my financial well being are being

threatened — not to mention the fact that i'm about to lose my f-------

insurance. any reply would be appreciated.

>

> bob

[Guest guest]

<< i'm hoping someone will receive this, and respond. i was diagnosed with

RA early last year, and am currently bombarding my system with drugs, and

i'm still doing downhill.>>

Hi Bob, and welcome. I'm sorry to hear you're not having much success with

your current regimen. What meds are you on?

I'm fairly recently diagnosed and am on MTX and Plaquenil, and I'm still

about the same. I read somewhere that it takes about a year to get

stabilized on the meds, and it sounds like you're right at that point. I

can relate to the financial worries, because most of us wonder if we'll be

able to work in the next few years. It's very frustrating and I've gone

through a period of wondering why this has happened to me, and have been

pretty angry. I wish there was an easy cure for this disease that would

make it just " go away " but I don't think that's in the cards. I think the

best hope is a reasonably pain free existence with minimal inflammation.

Hopefully someone will come along soon and have better information for you.

Carol in FL

[ ] help

hi:

last week i sent an email to an individual memeber of this group in hopes of

a response. received none.

i'm hoping someone will receive this, and respond. i was diagnosed with RA

early last year, and am currently bombarding my system with drugs, and i'm

still doing downhill. not looking for a miracle cure, just maybe some

information from someone who is about the same stage as i, and who has had

some success with treatment. it has now come to the point where my life, my

happiness, and my financial well being are being threatened - not to mention

the fact that i'm about to lose my f------- insurance. any reply would be

appreciated.

bob

____________________________________________

Service Brought To You By http://WWW.DWP.NET

[Guest guest]

he bob, sounds alot like me. i'm 42 tried about all the drugs. nothing seems

to work and i just had to borrow my first cobra payment do to losing my

insurance. sorry to hear that for you. hang in there. kathy in il

[Guest guest]

Dear Bob...Hi, I'm Tess. I'm sorry thngs are so rough for you at this

point. Living with RA can be a bit of a roller-coaster ride. I've been

doing well the past few months after several years of trying one drug

after another with little success.

Do you have a rheumatologist you really like & trust? I'm so sorry

about your insurance. I haven't worked for exactly 1 year. so I'm on

our state insurance for low-income/disabled folks. I consider myself

very blessed.

Please feel free to discuss things, ask questions & just vent, here.

This is a kind, informative, supportive group, each of us in a different

phase of the same difficult journey.

Tess

[Guest guest]

Dear Bob...Hi, I'm Tess. I'm sorry thngs are so rough for you at this

point. Living with RA can be a bit of a roller-coaster ride. I've been

doing well the past few months after several years of trying one drug

after another with little success.

Do you have a rheumatologist you really like & trust? I'm so sorry

about your insurance. I haven't worked for exactly 1 year. so I'm on

our state insurance for low-income/disabled folks. I consider myself

very blessed.

Please feel free to discuss things, ask questions & just vent, here.

This is a kind, informative, supportive group, each of us in a different

phase of the same difficult journey.

Tess

[Guest guest]

hi,

do any of you mind me asking what a cobra payment is…I am in Canada and

try to follow the conversation and I see this word over and over and

just kinda wondering who they are or what they are…

thankyou kindly

sam

Re: [ ] help

he bob, sounds alot like me. i'm 42 tried about all the drugs. nothing

seems

to work and i just had to borrow my first cobra payment do to losing my

insurance. sorry to hear that for you. hang in there. kathy in il

[Guest guest]

What I know about Cobra payments is that if you change jobs or stop working

you are able to keep your current insurance for a year. My ex husband made

Cobra payments when he changed jobs so he could keep insurance for children.

Hope this helps

shelly

[Guest guest]

it is continuation coverage for health insurance after you lose a job. it is

quite costly, but then again so is health care. kathy in il

[Guest guest]

Hello Bob,

First of all, how old are you?

This disease effects us individually. Some of us experience the same symptoms

and react differently to the medications. Most of us have learned patience

over the years. And we all have learned to live with a certain amount of

pain. And are happy for the tinest bit of relief whether it be from advil or

one of the many other drugs out there.

What's the status of your insurance? Maybe someone here can offer some

suggestions to you.

Meanwhile, hang in there and try to get things in perspective.

We all care and will help as much as we can

Judy in Indy

[Guest guest]

hello, bob

i'm new to this list myself.i am still not familiar with all the

names here, but i'm sure the listmembers mean to be helpful.

i may be in a position similar to yours. just finishing a a

20-day regimen of predizone with no improvement and feeling

worse. unable to work now, uninsured, no cobra and few resources.

i am trying to get up enough courage to apply for ssdi, ssi, and

medicaid plus whatever else i may qualify for in the state of

texas. i am seeing a different dr. tomorrow and hope to get some

answers. i am still finding it hard to believe that all these

symptoms/problems are cause by ra.

one thing i am confused about is which one should try to get

first...medical attention or medicaid, etc. and how do you get

the medical attention you need with no insurance or ability to

pay? my other dr said he would send me to a rhumatologist WHEN i

got ssdi. so how do you get ssdi without a rhumatologist

tests/reports???

are you working on a plan of action to deal with this illness and

your situation? on my better days of this last month, i've been

trying to sort all this out and get a plan of action. i know i

can't continue like this indefinitely.

lane

tx hill country

--- " bob a. " <bobb_texas@...> wrote:

> hi:

> last week i sent an email to an individual memeber of this

> group in hopes of a response. received none.

> i'm hoping someone will receive this, and respond. i was

> diagnosed with RA early last year, and am currently bombarding

> my system with drugs, and i'm still doing downhill. not looking

> for a miracle cure, just maybe some information from someone

> who is about the same stage as i, and who has had some success

> with treatment. it has now come to the point where my life, my

> happiness, and my financial well being are being threatened —

> not to mention the fact that i'm about to lose my f-------

> insurance. any reply would be appreciated.

>

> bob

>

> ____________________________________________

> Service Brought To You By http://WWW.DWP.NET

>

>

>

[Guest guest]

Hi Bobb,

Sorry that you are so frustrated right now. It's the nature of the disease,

I guess. We've all been there at one time or another. I have gone through

many of the RA meds and really have had just one heck of a time over the past

couple of months. What meds have you tried and how did they affect your

condition? Every person has different reactions to meds. Some help and some

have so many side effects that you wonder which is worse, the meds or the

sides. Hang in there. It took me a good year to get on a medication coctail

that actually brought relief. During that first year, I thought that I was

the sickest person on this planet. Then after about another year, the good

mec coctail stopped working graduallly. This is where I am now. Trying to

find another successful combination. I am scheduled for back surgery next

week and then 4 weeks after that, I will start a routine of Prosorba Column

treatments. My last med tried was Kineret which gave me a horrible allergic

reaction so it was stopped. Right now, I am in constant pain, both from my

RA and from herniated disc. But I know that there is gold at the end of the

rainbow. It takes time. (unfortunately) Like I said, it the nature of the

disease. I am glad that you found this group. The people here are wonderful

and give the best support that I have found anywhere. I also know the

financial problems of living with RA. I am 35 years old and a divorced

mother. I had to stop working a year ago due to my illness and was just

approved for SSDI last month. My son is 6 years old and his father is a

deadbeat dad who has an arrest warrant out for failure to pay child support.

It is a struggle, but you can't give up. There are many agencies that can

help. Where are you located? Chances are that there is a member of the

group who is close enough and can share experiences of how they get through.

Best of luck for a better day

Stacey in PA