Sjogren's

March 16, 1999

Hi Cee,

You might like to look at www.rheumatic.org/fibro.htm - it's an article

Ethel posted about one patient's successful approach to treating

fibromyalgia.

People often find that the Sjogrens improves after time on the antibiotics.

Chris.

Any ideas for sjogrens and fibromyalgia? I am in process of educating my

primary

doctor to see if I can start the antibiotic therapy. Thanks Cee

July 16, 1999

Hi Cee,

A friend of mine with fibromyalgia was able to start the AP because her doctor

ordered a blood test for mycoplasma. She was positive. The lab that performed

the

test was just the ordinary kind, not Great Smokies Lab or Dr. Nicholson's lab.

Her

mother and sister both have RA and she suspects that she has it, as well. That

could

be the reason for the positive mycoplasma test, however Dr. Nicholson did find

that

many people with fibromyalgia do have positive mycoplasma tests. It's worth a

try.

Connie

cee@... wrote:

> From: cee@...

>

> Any ideas for sjogrens and fibromyalgia? I am in process of educating my

primary

> doctor to see if I can start the antibiotic therapy. Thanks Cee

>

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

September 7, 1999

Anyone heard of a bloodtest for Sjogren's? My Grandmother just got out

of the hospital again after having swollen infected saliva glands. They

supposedly did a special bloodtest that gets sent off to California and

the results take six weeks. I tend to think my Aunt is misinformed. Oh

well. Grandma looked like a chipmunk in pain. a good four inches of

swelling on either side of her face the entire length of her face. I

tried to tell my Aunt that even if Grandma was diagnosed w/ SS it didn't

mean the Docs would do anything but treat problems. There isn't a pill

for SS, Is there?

She got IV antibiotics and flushed kidneys/blader to get rid of the

infection. Unfortunately the pain patch has her thinking she sees people

that died 30+ years ago.

The Tech that was w/ her the last day I was in Florida says the

standard, " You look just like her " . And I say but I also have her

Arthritis, bummer.

We took frequent stops on the drive and didn't do much and I felt pretty

good.

Take care,

Pat B

September 8, 1999

>>>I tried to tell my Aunt that even if Grandma was diagnosed w/

SS it didn't

mean the Docs would do anything but treat problems. There isn't a

pill

for SS, Is there?<<<

Hello,

There is no " cure " for Sjorgren's but it is treatable. There are

medications and therapies to make things more comfortable for the

person with this condition. My mom has Sjorgren's and she sees

an RD and takes medication. It has not " cured " her. Her neck

still looks like a foot ball players neck because of the

thickness but she still works and functions ok. She has times

when she is down in bed sick with it though. I think there are

times of flare up and times when it is not as active, like PA.

Lee Ann Walter

Wife of Steve;

Mom to: 16; Krystle 14;

Caleb 2.5+; 2.5; 1yr.

September 11, 1999

There is not one test for Sjogrens, but there are a few markers. See this

website for the Sjogrens Syndrome Foundation.

<A HREF= " http://www.sjogrens.com " >Sjogrens Foundation</A>

March 27, 2003

Dear Marcy,

Sjogren's is an autoimmune disease that attacks the moisture producing glands of the body. Common problems are dry mouth, dry skin, dry eyes and a real proneness to yeast infections. There are secondary problems where it affects the connective tissue in the body, especially in the liver, spleen area. It can also cause reduced platlettes. Fatigue is of course, one the symptoms.....

Mine is doing okay. It has been mostly the blood problems and some connective tissue issues. More recently the dry mouth has become a problem - I always have something to sip on when I eat or I seem to choke. My eye doctor said my eyes were dry which must have happened so slowly that I didn't notice until I starting using natural tear type eye drops. I also now need the humidfier on at night or I start coughing. Etc. Lots of things are affected ( including a tendency towards more cavities) that you just work through. I was put on plaquenil for it, which was increased and prednisone added when I was diagnosed with lupus.

I see someone sent you some sites. They are good, it's pretty much where I learned the most because, like AIH, many people have never heard of it.

Take care and write me directly if you have any questions.

Amy

September 19, 2005

Kim,

I haven't posted for some time, but I saw your subject line and it caught my

eye.

My friend had neuro Lyme years ago, when I and my family did, and now she has

Sjogren's. Perhaps it's a result of the autoimmune system's response to

Lyme. She has a lot of joint problems, Fibromyalgia and severe dryness in her

eyes and skin. She has always had bad migraines. As far as I'm concerned, she

is on way too much medication and I wish I could persuade her to do a more

holistic approach to her health, as I have been doing for years and have managed

to stay Lyme free after being sick with neuro Lyme in the early '90's for

five years.

Sue

September 19, 2005

that is a tough one to answer but I will try. i think

and I am no doc is that the infection is not under

control and so the body tries to attack the lyme in

differant areas. ask your doc what he thinks,.did you

get any bands like 23 or 34 on western blot?

eric

--- kim <meme21998@...> wrote:

> Hi,

> Has anyone here that has chronic neuro Lyme been

> dx'd

> with Sjogren's Syndrome? I have had lyme for about

> 13

> years. Recently I had a " flare " I usually have then

> about 3 times a year. I can go from feeling

> ok...going

> to the gym...to waking up with horrible muscle and

> joint pain. This last episode lasted about 4 weeks.

> My

> Rheumy ran a bunch of tests and I cane up poitive

> for

> the Sjogrens. I have most of the syptoms that I have

> read about so know I am thinking....was it the

> Sjogrens all along???? I have tested positive many

> times for Lyme. This is just so confusing

>

> Thanks.

> Kim

September 20, 2005

In a message dated 9/20/2005 11:16:33 AM Eastern Daylight Time,

periwinkles@... writes:

Hi Kim,

I hate to ask a simple question (sorry if it's been asked already)...but,

what is the difference between Sjogren's and Lyme? And what involves testing

in the Sjogren's? Is it a blood test too? or

Yes, the test or Sjogrens is a blood test....

September 20, 2005

Thanks Sue.....I know my immune systm is shot. I am so

torn because the treatment for it is steroids...which

I know you are not supposed to take if you have Lyme.

I feel like I am spinning in circles!

Kim

--- Poeticsue@... wrote:

> Kim,

> I haven't posted for some time, but I saw your

> subject line and it caught my

> eye.

> My friend had neuro Lyme years ago, when I and my

> family did, and now she has

> Sjogren's. Perhaps it's a result of the autoimmune

> system's response to

> Lyme. She has a lot of joint problems,

> Fibromyalgia and severe dryness in her

> eyes and skin. She has always had bad migraines.

> As far as I'm concerned, she

> is on way too much medication and I wish I could

> persuade her to do a more

> holistic approach to her health, as I have been

> doing for years and have managed

> to stay Lyme free after being sick with neuro Lyme

> in the early '90's for

> five years.

>

> Sue

>

__________________________________

- PC Magazine Editors' Choice 2005

http://mail.

September 20, 2005

Hi ,

I tested positive on an SSA/SSB test for Sjogren's. My

Dr. ordered a salivary gland biopsy to be 100% sure

that it is Sjogren's.

--- eric schulman <eric_s11050@...> wrote:

> that is a tough one to answer but I will try. i

> think

> and I am no doc is that the infection is not under

> control and so the body tries to attack the lyme in

> differant areas. ask your doc what he thinks,.did

> you

> get any bands like 23 or 34 on western blot?

> eric

>

> --- kim <meme21998@...> wrote:

>

> > Hi,

> > Has anyone here that has chronic neuro Lyme been

> > dx'd

> > with Sjogren's Syndrome? I have had lyme for about

> > 13

> > years. Recently I had a " flare " I usually have

> then

> > about 3 times a year. I can go from feeling

> > ok...going

> > to the gym...to waking up with horrible muscle and

> > joint pain. This last episode lasted about 4

> weeks.

> > My

> > Rheumy ran a bunch of tests and I cane up poitive

> > for

> > the Sjogrens. I have most of the syptoms that I

> have

> > read about so know I am thinking....was it the

> > Sjogrens all along???? I have tested positive many

> > times for Lyme. This is just so confusing

> >

> > Thanks.

> > Kim

>

__________________________________________________

September 20, 2005

poetic sue

I feel that the wholistic approach is very good for

strengthing the immune system and general health but

if this person who has sjrogrens then it is possible

that the infection was never killed and so the body

attacks the nerves upon a flare, if this persons

immune system were to ever go down and that includes

you poetic sue then the lyme could take over if the

proper conditions were met.if the lyme spirochete is

not removed from the nerves and blood vessels then

autoimmunnity well prevail. now I know for a fact that

lyme will indeed turn into an autoimmunity problem,I

dont need fancy tests as I was the test. now wholistic

must adress this aspect of lyme for any real cure to

be forethwith. we must remmeber " autoimmunty "

eric

--- Poeticsue@... wrote:

> Kim,

> I haven't posted for some time, but I saw your

> subject line and it caught my

> eye.

> My friend had neuro Lyme years ago, when I and my

> family did, and now she has

> Sjogren's. Perhaps it's a result of the autoimmune

> system's response to

> Lyme. She has a lot of joint problems,

> Fibromyalgia and severe dryness in her

> eyes and skin. She has always had bad migraines.

> As far as I'm concerned, she

> is on way too much medication and I wish I could

> persuade her to do a more

> holistic approach to her health, as I have been

> doing for years and have managed

> to stay Lyme free after being sick with neuro Lyme

> in the early '90's for

> five years.

>

> Sue

>

__________________________________

- PC Magazine Editors' Choice 2005

http://mail.

September 20, 2005

Hi Kim,

I hate to ask a simple question (sorry if it's been asked already)...but,

what is the difference between Sjogren's and Lyme? And what involves testing

in the Sjogren's? Is it a blood test too? or just a clinical diagnosis?

I sometimes wonder if I have other things besides lyme, but this week, I had

bad TMJ symptoms returning... and I got back on my antibiotics, and my pains

have sub-sided. ugh. I hate this lyme cycle. It's so difficult to get the

right meds when I want them.

on 9/19/05 8:56 PM, kim at meme21998@... wrote:

> Hi,

> Has anyone here that has chronic neuro Lyme been dx'd

> with Sjogren's Syndrome? I have had lyme for about 13

> years. Recently I had a " flare " I usually have then

> about 3 times a year. I can go from feeling ok...going

> to the gym...to waking up with horrible muscle and

> joint pain. This last episode lasted about 4 weeks. My

> Rheumy ran a bunch of tests and I cane up poitive for

> the Sjogrens. I have most of the syptoms that I have

> read about so know I am thinking....was it the

> Sjogrens all along???? I have tested positive many

> times for Lyme. This is just so confusing

>

> Thanks.

> Kim

>

September 20, 2005

Hi Kim,

I was just listening to a doctor speak the other day about Lactoferin. It is

what helps the body produce mucous in the eyes and nose. Since mucous is the

first line of defense in those areas it is essential to have it. I will send

some info on it with next post. I take it every day, it is combined with

colustrum and beta glucans which are major immune modulators. I thought I

was getting sjogrens and possibly I was, but the thing that I quit using

that helped was my eye makeup. I was having a major reaction to it and my

eyes were completely dry and burning all the time.

-- Re: [ ] Sjogren's

Thanks Sue.....I know my immune systm is shot. I am so

torn because the treatment for it is steroids...which

I know you are not supposed to take if you have Lyme.

I feel like I am spinning in circles!

Kim

Service.

September 20, 2005

,

Lyme disease is the beginning and when it goes into late stage then the body

is weakened and you can get any number of new illnesses. Everyone will be

different because of different genetics, and other weaknesses. This is why

it is so important to support your body in every way possible, through

better diet, rest, exercise, supplements, no stress etc.

-- Re: [ ] Sjogren's

Hi Kim,

I hate to ask a simple question (sorry if it's been asked already)...but,

what is the difference between Sjogren's and Lyme? And what involves testing

in the Sjogren's? Is it a blood test too? or just a clinical diagnosis?

I sometimes wonder if I have other things besides lyme, but this week, I had

bad TMJ symptoms returning... and I got back on my antibiotics, and my pains

have sub-sided. ugh. I hate this lyme cycle. It's so difficult to get the

right meds when I want them.

September 20, 2005

In a message dated 9/20/2005 2:13:46 PM, eric_s11050@... writes:

>if this persons immune system were to ever go down and that includes

>you poetic sue then the Lyme could take over if the

>proper conditions were met.if the Lyme spirochete is

>not removed from the nerves and blood vessels then

>autoimmunnity well prevail. now I know for a fact that

>Lyme will indeed turn into an autoimmunnity problem,

,

I understand your way of thinking because it is more medical based than mine.

There would not be any autoimmunnity problem if all of the systems of the

body are strong and in balance (Ying/Yang). No matter what illness prevails in

our bodies, including Lyme, the body has the ability to fight it off and

perhaps with the proper diet, the spirochetes could not flourish in an alkaline

environment. Also aerobic exercise is extremely important because if there are

spirochetes living inside the bodies, when we sweat from exercise, they will

die. I do at least 45 minutes of aerobic exercise every day. I have been well

for 10 years, and have had ups and downs usually related to eating the wrong

food, but my life is normal on the Sunrider herbal food and I feel healthy and

have a lot of energy. I no longer have migraines, facial palsy, swelling of

the joints, chronic fatigue and that miserable Limey feeling that we all know

so well. I also have shifted my way of thinking and perceive myself as a

healthy person and only go to the doctor once a year for bloodwork to see if my

numbers are okay. Antibiotics are a thing of the past for me and I'd only take

them in an emergency.

Anyway, take care.

Sue

September 21, 2005

I am trying not to take antibiotics so my body can

normalize.

eric

--- Poeticsue@... wrote:

>

> In a message dated 9/20/2005 2:13:46 PM,

> eric_s11050@... writes:

>

> >if this persons immune system were to ever go down

> and that includes

> >you poetic sue then the Lyme could take over if the

> >proper conditions were met.if the Lyme spirochete

> is

> >not removed from the nerves and blood vessels then

> >autoimmunnity well prevail. now I know for a fact

> that

> >Lyme will indeed turn into an autoimmunnity

> problem,

>

> ,

>

> I understand your way of thinking because it is more

> medical based than mine.

> There would not be any autoimmunnity problem if all

> of the systems of the

> body are strong and in balance (Ying/Yang). No

> matter what illness prevails in

> our bodies, including Lyme, the body has the ability

> to fight it off and

> perhaps with the proper diet, the spirochetes could

> not flourish in an alkaline

> environment. Also aerobic exercise is extremely

> important because if there are

> spirochetes living inside the bodies, when we sweat

> from exercise, they will

> die. I do at least 45 minutes of aerobic exercise

> every day. I have been well

> for 10 years, and have had ups and downs usually

> related to eating the wrong

> food, but my life is normal on the Sunrider herbal

> food and I feel healthy and

> have a lot of energy. I no longer have migraines,

> facial palsy, swelling of

> the joints, chronic fatigue and that miserable Limey

> feeling that we all know

> so well. I also have shifted my way of thinking and

> perceive myself as a

> healthy person and only go to the doctor once a year

> for bloodwork to see if my

> numbers are okay. Antibiotics are a thing of the

> past for me and I'd only take

> them in an emergency.

> Anyway, take care.

> Sue

>

__________________________________________________

September 21, 2005

Hi Kim,

I agree with others who have replied that many different disorders

can crop up in a system that has been weakened by chronic lyme. This

is why it is so important to catch the disease quickly and treat it

before it turns into a chronic condition, because once it's chronic,

it is a constant issue that can cause other issues to crop up.

It affects people in different ways as far as secondary conditions,

some of these can be because of genetic weaknesses, for example if

your family has a genetic weakness involving severe arthritis, it may

be more likely that this will be an area that is more easily affected

for you; or what one is exposed to and might contract, I was

apparently exposed to Hepatitis A and I contracted it, my doctor said

that Hep A is very common, it can be passed along as food poisoning,

he said it is even likely the rest of my family was exposed to it by

the same food but that it was such a small amount it didn't affect

them but did me because of my chronic lyme that made me more easily

susceptible.

This is how this disease can work, so I also agree with those who

have suggested buidling up the system with proper nutrition, rest,

control of stress, etc. It is even more important for those with

chronic illnesses to build up their health and lead healthy

lifestyles than the average healthy person.

Aine

www.theevolvingspirit.com

> Hi,

> Has anyone here that has chronic neuro Lyme been dx'd

> with Sjogren's Syndrome? I have had lyme for about 13

> years. Recently I had a " flare " I usually have then

> about 3 times a year. I can go from feeling ok...going

> to the gym...to waking up with horrible muscle and

> joint pain. This last episode lasted about 4 weeks. My

> Rheumy ran a bunch of tests and I cane up poitive for

> the Sjogrens. I have most of the syptoms that I have

> read about so know I am thinking....was it the

> Sjogrens all along???? I have tested positive many

> times for Lyme. This is just so confusing

>

> Thanks.

> Kim

>

> __________________________________

> - PC Magazine Editors' Choice 2005

> http://mail.

May 24, 2009

Hi ,

My son has been taking the DMARD Hydroxychloroquine, daily, for about 13 years

now. It's been pretty much benign. An extremely small percentage of those who

take it may develop a periphereal vision condition, so it is important to seek

out an ophthalmologist who can perform regular testing to monitor for this. I

think I remember reading once that the likelihood is far less than 2% of those

who take it become affected and I believe it's reversible when caught and the

med discontinued. It is extremely rare, like I said, and for my son ... he has

had no known or noticeable side effects from it.

It was added after prednisone, methotrexate, and indomethacin proved not

effective enough to get control of his systemic JIA, back in the day - before

the newer biologicals came out. When he had achieved a medicated remission at

one point, it was the first med we decided we would discontinue, since it's so

mild compared to the others he was taking. However, when we decreased the

Prednisone his symptoms came back with a vengeance, so we quickly re-started the

Plaquenil (Hydroxychloroquine) again, to try to get things back where they were.

Since then, we haven't dropped it. During a rough spot last year, we actually

increased the dose (only on alternating days) but we went back to the lowered

dose again several months ago, when he was having a hard time and we wondered if

maybe the higher dose might have played a role. He was also on a higher dose of

the NSAID (Indomethacin) at that time, and we returned to a lower dose of that,

as well. Just to get things stable again. It seems we're always lowering or

increasing the dose of meds, depending on how he's doing, to get things balanced

again during and after a flare. So it's hard to be completely sure what may be

causing what but we don't feel as if he's had any side effects from the

Hydroxychloroquine and it may be helping a lot.

Not too long ago, I remember reading about a study that determined that

Hydroxychloroquine may also be a preventative against diabetes. I've just

forwarded an article from the message archives that tells more about it.

Best wishes, to your son. I hope you find a good treatment plan that works well,

Georgina

Sjogren's

My 10 year old son (dx with JRA 2 years ago) has just had a parotid biopsy and

been dx with Sjogren's. His doctors are suggesting a course of

hydroxychloriquine(sp?)

Any experiences with this drug?

May 25, 2009

,

Jaye has been Hydroxycloroquine for a while. The first time she took it,

it did take about 5 or 6 months to get the results we wanted. When she felt

good, had no swelling and determined that she no longer needed med's we stopped

it and everything.? Unfortunatly it did not take long to realize that she needed

the meds back.? The first time she did have prolems with loosing clumps of hair

that we thought might be related to Hydroxycloroquine but not certain.? Since

she started it the second time she has no had the hair loss at least not that I

am aware of.? Jaye is only on 200mg per day so it is a low dose but we

think it helps.

Veri & Jaye 15 poly

Re: Sjogren's