Question for the group

[Guest guest]

LeeAnne...

I think your acupuncturist might be right. I have Phlebitis in my legs and

the marks you are describing are very similar to those I have on my lower

extremities. Phlebitis is irritated veins (probably from prednisone in my

case) that create clots and therefore restrict the blood flow in the area of

the clots and upstream which would be lower in the leg in my case. There are

meds that you can take to help increase your blood flow but I feel that

moderate daily exercise is about the best thing you can do for it. If you

smoke, quit. Smoking constricts the blood vessels.

I would think a diet rich in vitamins and minerals and plenty of water would

also be of great help to you. And last but certainly not least, try not to

internalize any stress or emotional concerns you may have. Deal with them

openly and as soon as they present themselves and get them behind you

quickly. In my opinion, emotional " congestion " can cause, or at the very

least, aggrevate other chronic problems you have.

Remember, I am a patient like you. Not a doctor. What I am telling you is

based on my own personal experience with impaired circulation but it has

worked well for me.

Steve

[Guest guest]

Steve,

Thank you for your input. Adlard says she experienced the same problem

when she used the hot water bottle as a child. (I am an addict!) I will take

these both theories to the Doctor on Monday. I am a prednisone user as well so

it is a possibility.

Question, excuse my ignorance but is phlebitis serious?

Lee-Anne

N51SK@... wrote:

> LeeAnne...

> I think your acupuncturist might be right. I have Phlebitis in my legs and

> the marks you are describing are very similar to those I have on my lower

> extremities. Phlebitis is irritated veins (probably from prednisone in my

> case) that create clots and therefore restrict the blood flow in the area of

> the clots and upstream which would be lower in the leg in my case. There are

> meds that you can take to help increase your blood flow but I feel that

> moderate daily exercise is about the best thing you can do for it. If you

> smoke, quit. Smoking constricts the blood vessels.

> I would think a diet rich in vitamins and minerals and plenty of water would

> also be of great help to you. And last but certainly not least, try not to

> internalize any stress or emotional concerns you may have. Deal with them

> openly and as soon as they present themselves and get them behind you

> quickly. In my opinion, emotional " congestion " can cause, or at the very

> least, aggrevate other chronic problems you have.

> Remember, I am a patient like you. Not a doctor. What I am telling you is

> based on my own personal experience with impaired circulation but it has

> worked well for me.

> Steve

>

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[Guest guest]

In a message dated 7/6/00 8:11:50 PM Central Daylight Time,

fadya@... writes:

> Question, but is phlebitis serious?

> Lee-Anne

Hi again Lee-Anne

Phlebitis can be deadly if it is not monitored properly. I had 3 episodes of

pulmonary emboli (blood clots detached and traveling in the bloodstream)

before my doctor decided to have a Greenfield filter installed in my vena

cava to keep the clots from going through my heart. That's where the danger

is. If a clot gets caught in a heart valve it could trigger a heart attack

which could be fatal. That happened to me 3 times and it was not fun I can

tell you. I also take coumadin(an anticoagulant) probably for life and seem

to be doing well so far but monitor frequently the PT(pro-thrombin time) or

the time it takes my blood to coagulate.

By the way, I am down to 3mg of pred daily and I would recommend if you take

much more than that to ween yourself down as soon as you can. I believe

prednisone to be one of THE most toxic drugs in our regimen of anti-arthritis

stuff.

You can get your pred in 1mg tabs so that helps in the weening.

Take care of yourself and keep us all posted on your progress.

Steve

[Guest guest]

Stony Brook labs??

yes, they are all negative no matter what you have.

sue in nj

[Guest guest]

Stony Brook's Labs are good. Their docs are not!

[ ] question for the group

> I am getting testing done for the Lyme Study being done by Columbia

> University.

> anyone know the quality of tests done by Stony Brook Labs???

>

> thanks

>

>

> Welcome to

>

> Easy Reference:

> Send a blank email message to:

>

> -Unsubscribe - Unsubscribe from the list

> -Digest - Switch your subscription to a digest

format

> -Normal - Switch your subscription to normal

>

> Please send messages not related to Lyme disease (this includes humor and

information about other diseases) to -Offtopic

>

> The archives can be accessed at

>

> The chat room is always open!

> /chat

>

[Guest guest]

Hi, I think that the quality of their lab is good.My

tests for lyme came back positive when done at Stoney

Brook Labs. This is how I finally found out that I had

Lyme disease. Other Dr.'s could not figure out what

was wrong with me,all other labs came back neg. I dont

know if this is a coincidence.

--- Pansyrip@... wrote:

> I am getting testing done for the Lyme Study being

> done by Columbia

> University.

> anyone know the quality of tests done by Stony Brook

> Labs???

>

> thanks

>

>

[Guest guest]

Hi Sue,

I disagree. Dr. J. uses Stony Brook for the Western Blot all the time.

Whereas Quest(lousy at Lyme tests) showed 1 band for my son Stony Brook

showed 6. 2 were specific for Bb.

a

Re: [ ] question for the group

> Stony Brook labs??

> yes, they are all negative no matter what you have.

> sue in nj

>

>

> Welcome to

>

> Easy Reference:

> Send a blank email message to:

>

> -Unsubscribe - Unsubscribe from the list

> -Digest - Switch your subscription to a digest

format

> -Normal - Switch your subscription to normal

>

> Please send messages not related to Lyme disease (this includes humor and

information about other diseases) to -Offtopic

>

> The archives can be accessed at

>

> The chat room is always open!

> /chat

>

[Guest guest]

Hi.

I know someone who got a Hepatitis vaccination while untreated for lyme and

that really caused her to become severely debilitated. Im not sure if Rabies

will do the same thing but I thought that I'd throw that out at ya.

Good Luck.

Debbie

Brooklyn

P.S. I myself would be leary of getting any kind of vaccination as being a

Lymie with a very compromised immune system!!!

[Guest guest]

Hi Everyone!

My daughter was diagnosed in October 2001 with systemic JRA. We are

very fortunate that she has responded very well to all of the medications. I

feel she is heading toward remission. She was on prednisone for about 3

months and the weaned off and has been doing well. She currently is still on

indocin 3 times a day

and methotreaxte injections weekly.

Here is why I am writing. Two weeks ago we had routine blood work done. The

results came back with a high alkaline phosphotase about 7 times higher than

the normal range. They repeated blood work twice and still hig. They broke

down that it was coming from bone activity. The bone scan was done the next

day and found a spot on her left proximal femur. The MRI was done on Monday

and also conluded that there is a bone tumor. It is very small and the

radiologists and ortho DRs say

it looks benign but are still doing biopsy on Monday 4/8. They think the

tumor is a osteiod osteoma. Has anyone else out there experienced this and is

it related to JRA? The ortho Dr said it possibly came from taking prednisone.

She wasn't on it that long. Any feed back would be appreciated.

Thanks Again for Listening,

Holly - 's mom - systemic jra 5

Hoping everyone is having pain free days.

[Guest guest]

Holly,

I looked up the osteoid osteoma you asked about. This

doesn't necessarily have to be related to JRA/Still's

or any of the sort. Nor is it necessarily related to

taking of any meds. In my med text books this is word

for word what it says about this:

- Osteoid osteoma may occur in any bone but is most

common in long bones. It tends to occur in young

adults. Pain ( usually worse at night) is classically

relieved by low-dose aspirin. Physical exam may

reveal atrophy of regional muscles ( which means

decrease in size of the surrounding muscles). The

characteristic appearance on x0ray is a small

radioclucent zone surrounded by a larger clerotic

zone( which is an area viewable by the x-ray, x-ray

will go through it, surrounded by a hardened area).

On bone scans it appears as an area of increased

uptake. Permanent relief is obtained only if the

small radiolucent zone is located and removed

surgically.

-from: The Merck Manual 17th edition.

Hopefully this helps you out a little bit. But don't

worry this kind of tumor is a benign tumor. You both

are in our prayers and we wish you all the best. Keep

us informed please....

Love to all,

Casaria (mom) & Tasie (2 1/2yrs)

__________________________________________________

[Guest guest]

Hi group this is Carolyn and I have a question. How many of you have JRA in

your gentic background either side. I am very courious as to the course JRA

is taking. In my family as far back as my Mom knows there was no family

history on either my father's side or hers. My oldest brother 55, has a

psorasis form of a auto-immune difficiencey, my next brother 52, has had

Ulcerative colitis since a teenager , another form of auto-immune disease. My

sister 48, well lets just say no brains period and lets just leave it at

that! LOL ! Then I come along with JRA from very early on. I am now 42. I am

wondering if JRA skips generations, if so, how many? as my teenagers are ok

for now. I thank you for your input to my own mystery. Hope you all have a

great Limber day! Carolyn Mullin, AKA - 2 impatient

[Guest guest]

Ok, thank you for your input. My Rheumy (Head of Rheumatology at Metro Health

here in Cleveland) has alway told me it was genetic. My kids pediatrician has

watched my kids like a hawk through out there lives for signs and symptoms. I

was even told back in the 80's not to have kids because of the

pre-disposition and genetic factor. I have always been told that in our

genetic make up JRA is somewhere and was passed on to me. This is why I asked

the question. I have been told these things by at least 4 Rheumys including

the Cleveland Clinic. As a Nurse myself, (LPN) I have asked countless

patients and their family members. JRA seems to be somewhere in the history

for most. My mom only tells me of a cousin of hers that had trouble " of some

sort " when she was younger on their farm running and etc. Thats the problem,

generations dismissed alot of " growing pains " and did not speak of JRA. Nor

did those kids recieve help. Thank you all, Carolyn

[Guest guest]

Thank you Becki, I will look up the research by Vanderblit. I hope is

doing better at school. The Aids need to be much more involved in his care.

Carolyn

[Guest guest]

Hi Carolyn,

My husband's father has had RA since his early 40's. He's now in his 70's.

Last year our 8 year old son Chase was diagnosed with systemic jra. My

in-laws feel really bad and believe it's somehow passed down. Who knows?

Barb, mom to Chase

[Guest guest]

Carolyn-

Interesting question. I have no confirmation of any jra or ra in 's genetic background. However, my grandmother does recall her mother ('s great-great grandmother) having something wrong with her legs. She remembers sometimes they hurt so much she'd pull herself along on the floor with a chair. Sounds suspect to me. My grandmother says everything back then was "rheumatism" which could mean virtually anything. So, if there's a genetic link here, it's far removed. My great grandmother had lots of children who had lots of children and so on. 's the only one with jra. Lucky her!!

Diane (, 3, pauci)

[Guest guest]

Hi Carolyn, Rusty here. me have younger sis and niece and cousin on fathers side of family who have Adult onset R A , except cousin, she has jra A. S.

Rusty Limbs

On Tue, 9 Apr 2002 10:02:11 EDT cybersis40@... writes:

Hi group this is Carolyn and I have a question. How many of you have JRA in your gentic background either side. I am very courious as to the course JRA is taking. In my family as far back as my Mom knows there was no family history on either my father's side or hers. My oldest brother 55, has a psorasis form of a auto-immune difficiencey, my next brother 52, has had Ulcerative colitis since a teenager , another form of auto-immune disease. My sister 48, well lets just say no brains period and lets just leave it at that! LOL ! Then I come along with JRA from very early on. I am now 42. I am wondering if JRA skips generations, if so, how many? as my teenagers are ok for now. I thank you for your input to my own mystery. Hope you all have a great Limber day! Carolyn Mullin, AKA - 2 impatient

[Guest guest]

Carolyn-

JRA does not run in families. It is unbelievably rare

to have two people in the same family with JRA. There

is no link, nothing. As far as research goes today

you should have to worry about your kids, or your kids

kids. Unfortunately some people are just unlucky, but

at least it won't be past down the line.

Love to all,

Casaria & Tasie

__________________________________________________

[Guest guest]

I have no guilt, but I am knowlegable of the signs and symptoms for my kids

own sake. If I lived with guilt and resentment, How would I live life with

this disease and bounce back from 13 orthopedic surgeries? My husband and

kids laugh at my " bionics " Hummor, love, compassion and trust in our doctors

is what is needed. Not excess baggage to weigh any of us down. All of you

wonderful parents had about as much to do with the Sept. 11th disaster as

your kids getting this disease. However you are helping them cope through

your love and devotion. As a child and teenager many moons ago dealing with

JRA, you are doing a great job! Carolyn

[Guest guest]

Dear Carolyn,my aunt has RA,lupas and fibromyalga,my husbands niece has lupas

and

fibromyalga.Arthritis can fall under what they call an umbrella,dont really know

what that means other than one auto immune disease can be passed on as another

auto immune in the next generation.Genetics is just part of it,I believe you can

carry the gene,but it takes something else to activate it.I only know of one

brother,sister who both got arthritis,one JRA the other RA.Vanderbilt is doing

research on siblings right now.I think a couple of JRA veterans on this list are

part of some sort of research to do with genetics.In my personal case I was

always terrified of my kids getting diabetes,another auto immune disease,that

they say is not hereditary.My brother,father,and grandfather all developed

Jeuvenile diabetes before age 6. Becki and 3systemic

cybersis40@... wrote:

> Hi group this is Carolyn and I have a question. How many of you have JRA in

> your gentic background either side. I am very courious as to the course JRA

> is taking. In my family as far back as my Mom knows there was no family

> history on either my father's side or hers. My oldest brother 55, has a

> psorasis form of a auto-immune difficiencey, my next brother 52, has had

> Ulcerative colitis since a teenager , another form of auto-immune disease. My

> sister 48, well lets just say no brains period and lets just leave it at

> that! LOL ! Then I come along with JRA from very early on. I am now 42. I am

> wondering if JRA skips generations, if so, how many? as my teenagers are ok

> for now. I thank you for your input to my own mystery. Hope you all have a

> great Limber day! Carolyn Mullin, AKA - 2 impatient

>

>

>

>

>

[Guest guest]

Becki, diabeties is a genetic condition, and is more likely to affect chidlren if both parents a diabetices.

Rusty(will argue that one)

On Tue, 09 Apr 2002 09:38:55 -0500 Allan Larson <alarson1@...> writes:

Dear Carolyn,my aunt has RA,lupas and fibromyalga,my husbands niece has lupas andfibromyalga.Arthritis can fall under what they call an umbrella,dont really knowwhat that means other than one auto immune disease can be passed on as anotherauto immune in the next generation.Genetics is just part of it,I believe you cancarry the gene,but it takes something else to activate it.I only know of onebrother,sister who both got arthritis,one JRA the other RA.Vanderbilt is doingresearch on siblings right now.I think a couple of JRA veterans on this list arepart of some sort of research to do with genetics.In my personal case I wasalways terrified of my kids getting diabetes,another auto immune disease,thatthey say is not hereditary.My brother,father,and grandfather all developedJeuvenile diabetes before age 6. Becki and 3systemiccybersis40@... wrote:> Hi group this is Carolyn and I have a question. How many of you have JRA in> your gentic background either side. I am very courious as to the course JRA> is taking. In my family as far back as my Mom knows there was no family> history on either my father's side or hers. My oldest brother 55, has a> psorasis form of a auto-immune difficiencey, my next brother 52, has had> Ulcerative colitis since a teenager , another form of auto-immune disease. My> sister 48, well lets just say no brains period and lets just leave it at> that! LOL ! Then I come along with JRA from very early on. I am now 42. I am> wondering if JRA skips generations, if so, how many? as my teenagers are ok> for now. I thank you for your input to my own mystery. Hope you all have a> great Limber day! Carolyn Mullin, AKA - 2 impatient>>>>>

[Guest guest]

To all, understandably, we tend to wear the mantel of Guilt, be it with our power to affect circumstances surrounding the lifes of out families. But I would say to my 'forfathers'and mothers' don't feel guilt for what I have to live with in my life, only serves to make me the person I am.

'So fret now in a sea of remore, rather join the force, and steer me onward to a steady course!'

Rusty Limbs (toothless grin)

On Tue, 9 Apr 2002 11:35:10 EDT owits@... writes:

Hi Carolyn,My husband's father has had RA since his early 40's. He's now in his 70's. Last year our 8 year old son Chase was diagnosed with systemic jra. My in-laws feel really bad and believe it's somehow passed down. Who knows? Barb, mom to Chase

[Guest guest]

Personally, I really think that the jury is out on this question. Although

I don't believe it is genetic in the same way as a blue eye male marries a

blue eye female, you are only going to have a blue eye children, I do

believe that you can be born with a predisposition towards it. (acquiring

JRA or another form of an autoimmune disease). That perhaps somewhere in

the genetic code there is a trigger just waiting for the right kind of ammo.

My Mom has Lupus; and my sister is as yet undiagnosed, but there is a

feeling she has renauld and possibly lupus.

Again, if they knew what caused it " triggered it " they probably would be one

more step closer in curing it. And wouldn't that be great

Sharon, Mom to Meghann

JRA and PRS

> Hi group this is Carolyn and I have a question. How many of you have JRA

in

> your gentic background either side. I am very courious as to the course

JRA

> is taking.>

[Guest guest]

Rusty,I can remember when my brother was being pulled off of life support

due to 3 strokes he had because his diabetes was so out of control,and

crying for fear that I may of passed this on to my daughter,his specialist

told me that it wasnt getetic and that if my brother had had kids they

would only have a 4% chance of getting it,Here I am thinking my brother,

father ,grandfather,aunt and cousin all got it as kids.My mom didnt have

it and my grandmother didnt have it.Every family member I have that had

diabetes is now gone as a direct result of it.So Rusty I doubt it too.My

kids get tested every year.

A Morse wrote:

Becki, diabeties is a genetic condition, and

is more likely to affect chidlren if both parents a diabetices.Rusty(will

argue that one) On Tue, 09 Apr 2002 09:38:55 -0500 Allan Larson <alarson1@...>

writes:

Dear

Carolyn,my aunt has RA,lupas and fibromyalga,my husbands niece has lupas

and

fibromyalga.Arthritis can fall under what they call an umbrella,dont

really know

what that means other than one auto immune disease can be passed

on as another

auto immune in the next generation.Genetics is just part of it,I

believe you can

carry the gene,but it takes something else to activate it.I only

know of one

brother,sister who both got arthritis,one JRA the other RA.Vanderbilt

is doing

research on siblings right now.I think a couple of JRA veterans

on this list are

part of some sort of research to do with genetics.In my personal

case I was

always terrified of my kids getting diabetes,another auto immune

disease,that

they say is not hereditary.My brother,father,and grandfather all

developed

Jeuvenile diabetes before age 6. Becki and 3systemic

cybersis40@... wrote:

> Hi group this is Carolyn and I have a question. How many of you

have JRA in

> your gentic background either side. I am very courious

as to the course JRA

> is taking. In my family as far back as my Mom knows there was

no family

> history on either my father's side or hers. My oldest brother

55, has a

> psorasis form of a auto-immune difficiencey, my next brother

52, has had

> Ulcerative colitis since a teenager , another form of auto-immune

disease. My

> sister 48, well lets just say no brains period and lets just

leave it at

> that! LOL ! Then I come along with JRA from very early on. I

am now 42. I am

> wondering if JRA skips generations, if so, how many? as my teenagers

are ok

> for now. I thank you for your input to my own mystery. Hope

you all have a

> great Limber day! Carolyn Mullin, AKA - 2 impatient

>

>

>

>

>

[Guest guest]

Carolyn

JRA is genetic the doctors have told me that but its also eviromental factor

could go either way we did a survey on the kids i guess a year ago

the family history and there was some line that it does travel the genes

i will write the line down as i have found in my family and its not just

JRA you should see the health problems that come up with some of the familys

that have JRA links in them

from diabetes asthma allergys RA most auto immune diseases

will link to JRA in some way

Robbin

[Guest guest]

I do believe on this list there is someone who has 2 children with

jra..probably is in the archives..but it is very rare.

karen(tab17..poly)

From: Casaria Tuttle <snickers4you_2000@...>

Reply-

Subject: Re: Re: Question for the group

Date: Tue, 9 Apr 2002 07:12:52 -0700 (PDT)

Carolyn-

JRA does not run in families. It is unbelievably rare

to have two people in the same family with JRA. There

is no link, nothing. As far as research goes today

you should have to worry about your kids, or your kids

kids. Unfortunately some people are just unlucky, but

at least it won't be past down the line.

Love to all,

Casaria & Tasie

__________________________________________________