Update

[Guest guest]

Katharine, 85 is a good pulse. 75 is a good normal middle of the day pulse. 92

was my watching Alfred Hitchcock pulse. That's good. And believe it or not,

it builds character to say no and mean it.

Swan

[Guest guest]

Katharine

I am not certain of a normal heart rate. I believe it to be between 60-80.

I was as high as 150. Lately, my low is about 74 which is normal for me.

At night, my heart beat is " louder " but not really faster. I wonder if this

is how it will be from now on. I took RAI in May 99. It has been a slow

climb back to normal. Last blood test was l 1/2 months ago. TSH was .03.

At times, I feel pretty good. I do take sunflower seeds to increase my zinc

and copper. I also have TED.

This is a great site for comparing notes. I wish you the best!

MK

update

>I went to my new primary care dr. and he didn't think I needed a referal

>to an endo. I suppose it's because I've been on tapazol for 10 months.

>He says he'll follow my current plan, with blood tests. He took blood

>for a full blood work.

>

>He did mention RAI in the context that if my condition isn't

>controllable then they go to RAI. I don't know how long he plans to wait

>to make that determination. I'll stick with him for now.When it does

>come up, I plan to just say no. If it means another dr. so be it. I'll

>call him Monday afternoon for the results of my tests. He had no problem

>with my asking for copies of all blood test results.

>

>I took my pulse earlier today and it came out 85. Does anyone know what

>a normal range ought to be? Sometime I can still feel my heart beating

>though it isn't fast just " louder " . that's that only word I can thing

>of. Everyone be well.

>

>Katharine

>

>

>

>__________________________________________

>NetZero - Defenders of the Free World

>Get your FREE Internet Access and Email at

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>

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> - Simplifying group communications

>

>

>

[Guest guest]

Stop the Os-cal, that is iodine from oyster shell and probably has zinc in it

-- that is more speed for you right now. Go on the meds, Tapazole worked for

me, took it for 7 mos. and in remission now for 2 years. Twin Labs Allergy

Caps contain no iodine (at the health food store only). You need to first

get your thyriod under control or you just might have a storm and those are

NO FUN, danger zone. Sheri Lynn

[Guest guest]

Go on the meds! Tapazone and PTU are availabe. If one doesn't work the

other probably will. You can still work with the homeopath and if this

approach works then you can discontinue the meds. There are side affects

but usually show up within the first few months. Being hyper can be

dangerous if not controlled. I've been on PTU for over 3 years. take care,

M

update

I have been reading the daily messges with interest so thought I

would

update you all regarding my newly discovered hyerT. The doctor called

me today to tell me of the scan results. I have Graves' Disease. In

her next breath she said I needed to begin taking PTU immediately. I

told her I would not and she was very upset. She is afraid I will

present in the ER with a thyroid storm I suppose. I gave her the

number of my homeopath to see if she and the homeopath could work

together. On my first visit to the Dr. she said she was not against

alternative treatment if it were possible to treat whatever we

discovered. Now she seems to be changing her tune...so this may end

up

a sticky situation with her. I continue to go to the homeopath. She

gives me remedies when I go...still don't know what they are. She

says

some are to slow me down, others to help my anemia. I am also taking

magnesium, Os-Cal and something to help me sleep. I really think I

need a good multi-vitamin right now and will try to find the one

mentioned here from Twinlabs. My question here today is: If I decide

to go with a medication (surgery and RAI are out) which ones are the

least harmful, or have the least side effects? I am not very familiar

with the drugs mentioned. I am also wondering how long to hold out.

Can I really reduce my T3 and T4 this way or will I only decrease the

symptoms? Well that was more than one question, sorry 'bout that.

Thanks to all of you for your help...and ...awesome website. You

da man!

------------------------------------------------------------------------

1.6 Million Digital Images!

Download one Today from Corbis.com

1/3356/7/_/6563/_/955673340/

------------------------------------------------------------------------

[Guest guest]

update

Dear Kathy

Well the saga continues. All the tests we were doing, blood cultures

etc., kept coming up negative. So, I asked s Pediatrician to do an HHV6

(roseola) antibody test. She agreed because of s' earlier high titer.

Bingo! s' titer went from 160 (fairly high) to 320 (really high). So

along with everything else 's roseola has reactivated itself. We started

on acyclovir yesterday. We'll see what happens.

I heard yesterday of another child with autism beginning seizures in the

last month. I told mom to have his HHV6 checked.

How is doing? Still more seizures? Have you ever had his HHV6 titer

checked? Is spring the time of the greatest occurance of HHV6? I'll try to

check.

Well so much for the HHV6 soapbox for today.

More later.

KH

[Guest guest]

,

Great news! I hope keeps improving! Jana

[Guest guest]

,

That is great news about ! Kelsey will be having blood work done

next month, and I'm anxious to see what her sed rate is now. It was 50 in

April, upon diagnosis, and I'm hoping to see it down this time! I hope

continues to improve, and that the meds are indeed doing there job

[Guest guest]

Hi

It's good to hear that is doing better. you must be thrilled to be

decreasing the prednisone! I told about it and she said please

tell that she says " Great! " She really enjoyed getting to know

in Orlando.

Hope the progress continues,

Liz

LINDA BUDD wrote:

>

>

> Hi Everyone, went to her ped. rheumatologist today, and she

> said she looks good. No swelling in her knee. We also had blood work

> done, and everything looked better than it did in July.

> Her Sed Rate was 78 in June, 126 in July, and today it

> was 42. I was so excited that it came down so much. The Doctor thinks

> the Methotrexate is working. She did increase it again to 20mgs a

> week, by injections. And said to go down a mgs. on the Prednisone. So

> tommorow I will give her 2mgs.

> I just wanted to share my good news with everyone,

> cause it really made my day. I know its still not in the normal

> range, but at least its heading in the right direction.

> Take Care B

>

> For links to websites with JRA info visit:

> http://www.geocities.com/Heartland/Village/8414/Links.html

[Guest guest]

SO glad for Jenni!

[ & Skyler]

Update

Hi Everyone, went to her ped. rheumatologist today, and she said she looks good. No swelling in her knee. We also had blood work done, and everything looked better than it did in July. Her Sed Rate was 78 in June, 126 in July, and today it was 42. I was so excited that it came down so much. The Doctor thinks the Methotrexate is working. She did increase it again to 20mgs a week, by injections. And said to go down a mgs. on the Prednisone. So tommorow I will give her 2mgs. I just wanted to share my good news with everyone, cause it really made my day. I know its still not in the normal range, but at least its heading in the right direction. Take Care BFor links to websites with JRA info visit: http://www.geocities.com/Heartland/Village/8414/Links.html

[Guest guest]

Debra,

After you get through the reality of what is happening, which can take a

while. I have felt and still do feel guilty about being on disability. Yet I

know I can't work to make enough to survive. I feel guilty when I have days

that the only thing I can do is lay on the couch. You will eventually get use

to things as they are. You take things a day at a time. I also worried about

what is next because I am so lost now. But you will find those gaps will

redirect themselves you need to sit back and not worry now rest, take the

naps. Answers will come to you when you are ready ti hear them. Just don't

overwhelm yourself.

gayle/trans.6-99

galye@... ^0^

`

[Guest guest]

<<<<< Debra >>>>> You don't need to dry up and die!! You just need to learn to pace yourself. Ignoring your symptoms is counterproductive. You have to listen to your body, and you have to learn to rest!!! When I ignored my symptoms, I deteriorated. Now that I schedule naps and rest, I'm much better. You can still accomplish great things...just not everything at once! <ggg> You need to re-prioritize your life. Put the things that give you the most joy at the top of the list. The things that are no fun, and stressful, fall to the bottom. So, enlist other family members to pick up the things on the bottom of your list, or decrease their frequency or eliminate them all together! When you spend what little energy you have on chores, you'll feel worse, not better. When you spend that same energy on the things that delight you, you'll start to feel much better.

HTH...

Don

Terradon Unlimited

www.TerradonUnlimited.com

"People who ask me how we can still have such a positive attitude after all we’ve been through, have it all wrong…We’ve been able to get through all that we have BECAUSE we have a positive attitude". Don Hanson 8/2000

[Guest guest]

Hi ,

I'm glad to hear the good news about . I think it's great that

she's been able to taper the prednisone. I wouldn't be so quick to rush

to lower the MTX, though. That's usually more of a long-term maintenance

drug. When I think about how well is doing, after dealing with

this JRA for almost 6 years, I give a lot of credit to the DMARDs he

takes, the Methotrexate and Plaquinel.

With these medicines we have been able to change the natural destructive

course of the illness. 's joints are still in great shape. Years

ago, before people had these options at their disposal, I doubt very

much that his prognosis would be as good as it is. I've seen some people

who didn't take an aggressive stance to combat their RA. I've seen what

it's capable of doing to joints, particularly in the hands and feet. To

my way of thinking, the DMARDs have been a sort of insurance against

this kind of potential destruction.

Wow! is tall! has had growth problems. He'll be 12 in April

and he is just about 4 feet tall. In comparison, his 'little sister'

Kayla is almost 10 and already stands 4 feet 6 or 7 inches.

I'm not sure about the speech issues being related to onset of JRA. Josh

was much older, 6, when his began. Your theory does make sense though.

Yes! I too think it is very inspiring to read about the amazing feats

that people with arthritis can accomplish. Not to say that everyone has

the ability but these people have done some truly amazing things. Just

reading messages here sometimes brings tears to my eyes. Tears of

sadness AND tears of happiness. I've seen stories of kids in the special

olympics, kids taking and excelling in the martial arts, kids on their

school swim and golf teams and cheerleading squads, playing baseball and

.... even touch football. It's truly amazing to follow their histories,

to read about how hard it's been for them to struggle through arthritis

flares and then to later on read about what they've been able to

accomplish, despite the setbacks.

Sharing some of the stories here with has given him a good idea

of the ups and downs that people with JRA face. He knows what it's been

like for him but it's been a real blessing for us to be made aware of

others children's experiences. The only negative aspect is that once

children go into remission, their parents usually leave our group.

Occasionally I'll get an email message with an update on their status

but once the JRA is under control, it seems they're ready to move on.

Unfortunately, that means that most people in our group are ones who are

still battling active JRA.

Reading stories like the one at the URL you provided can be very

inspiring! I especially like the sentence she chose to end it with: If

you believe in yourself, anything is possible.

Thanks,

Georgina

G wrote:

>

> Hello everyone....

>

> Its been awhile since I posted, I was so busy over Christmas with work.

> has been doing very well. Her last appointment was in Dec. The Ped

> Rhuem increased her Methotrexate and decreased her Prednisone. She is

> currently on 5ml Pred daily and 7.5mg Metho weekly. It seems to be holding

> her well. Our next appt is in early Feb. and I am hoping to reduce the

> Metho, but we will see how that goes. She has been growing like a weed! For

> 5 she sure seems tall at 3'10. We have now been advised she needs a speech

> pathologist. They think her annunciation isn't quiet what it should be for

> her age. The thing is, right about the time her verbal abilities started

> (18months) her arthritis kicked in, everything at that point slowed, and I

> often wonder about any correlation between certain things. Any thoughts

> anyone? Similar thoughts? Ok...on the lighter side, I read this Article

> about a young woman (27 yrs old) from Toronto who ran in the JIM (Joints in

> motion) Marathon in Orlando on Jan 7th, she has RA and ran 26.2 miles! It

> was highly inspirational for me to even consider that one of our own

> children may do this one day! Here is a link for any who wish to read

> it...Its one of those stories I will tell about when she gets older.

> http://www1.sympatico.ca/news/Specials/2001/01/10-jackie1.html

> Take Care

>

[Guest guest]

,

I'm so glad is doing well and growing. I know everytime Tally

grows an inch, I just want to jump for joy. Tally has trouble with speech

but it could either be related to an occasional painful neck or just from

where I'm from.

Congradulations and I hope it continues to improve for .

kat

[Guest guest]

Marinda --- hooray!

It's too bad we have to eat less sushi ---

but at least you

prove we can have SOME.

You said you eat one bad meal a day. What do

you consider

bad?

Congrats again.

Pat

[Guest guest]

> It's too bad we have to eat less sushi --- but at least you prove we can have

> SOME.

Well, sushi is more than fish and seafood.... there are sushimi rice and

vegetable dishes as well....

[Guest guest]

It's not the same without raw fish :-(

MarindaAs of 02.10.2001: 44 weeks 'til GRADUATION!!!Between Tomorrow's Dreams And Yesterday's Regrets, Are Today's Opportunities.

Re: Update

> It's too bad we have to eat less sushi --- but at least you prove we can have> SOME.Well, sushi is more than fish and seafood.... there are sushimi rice andvegetable dishes as well....

[Guest guest]

I used the green stevia, it tastes the same, only I put

it in my tea. Doesn't turn my tea green. When I take

this I feel a little weird. I just pushed it away with

other things that make me feel weird also. I also have

the liquid drops and that makes me feed weird also.

LIZ

> [Original Message]

> From: Nick Grant <nwgrant@...>

> <candidiasis >

> Date: 4/19/01 2:01:19 AM

> Subject: update

>

> Hi everyone

>

> Went back to my doctor today for my weekly " hit " of anti-candida

treatment.

> Asked him about the hormone thing, and he agreed that candida feeds of

> Estrogens and Progesterone. Great. So which one do you take if it feeds

> off both. I give up. There is no one over here that understands about

> thyroids, hormones, and life with it all. Can you tell I have had a

> headache for 3 days.....

>

> Tried telling him it was tiredness, due to hormonal fluctuations, but that

> went over his head... Not really, we just keeps saying wait until the

> treatment is finished, and then the candida will not upset the hormones so

> much, and start to balance themselves. is this possible?

>

> Has anyone seen GREEN stevia. I have run out of the white stuff, and in

> Pikos, my " greenie " shop, they sell green stevia. I don't want to buy it

as

> it might taste funny. Green stuff on my oatmeal? Yuck!

>

> Oh well, my mum and sister arrive tomorrow, I am looking forward to it,

but

> she will hassle me about my diet, and how thin I am.....I hate that! I

feel

> ratty thinking about it.

>

> Just want to comment also on the American element, as this applies to you

> guys. I still haven't worked out if you are all rich, or generous, or

both!

> <grin>. I just received my 3rd parcel in 3 months from people I hardly

> know, and I am blown away by it. This isn't to say other nationalities

are

> not generous as well, but the ones who have sent my stuff are all

> Americans... (I think..) I am really touched by this, and may the Lord

> bless you 3 people ( 2 not on this list) for your generosity to myself and

> my family. In a perfect world this would happen all the time, but

nowadays,

> it is seldom seen. I feel really helped by people on this list, and just

> wanted you all to know that....no, I am not pre-menstrual.....(given to

> outbursts of emotion), just touched by the generosity and helpfulness of

> people around the world.

>

> Thanks again

>

>

>

>

>

> Send blank message to candidiasis-unsubscribeonelist if you want to

UNSUBSCRIBE !

>

[Guest guest]

>

> Hi Group

> I have posted a couple times about my progress, and the fact that

my daughter wants to be a living donor for me. I even e-mailed Jerry

personally and I have gotten no reply. I don't know if maybe I

wasn't doing something right. I am new to the computer. Hope

everyone is well, I'm glad to hear our girls Genny and Jodi are

coming along. It means all our prayers have been answered. If

anyone gets this, please let me know.

>

> Thanks in Tustin

, your message came through just fine. Be well

Ann

[Guest guest]

>

> Hi Group

> I have posted a couple times about my progress, and the fact that

my daughter wants to be a living donor for me. I even e-mailed Jerry

personally and I have gotten no reply. I don't know if maybe I

wasn't doing something right. I am new to the computer. Hope

everyone is well, I'm glad to hear our girls Genny and Jodi are

coming along. It means all our prayers have been answered. If

anyone gets this, please let me know.

>

> Thanks in Tustin

, your message came through just fine. Be well

Ann

[Guest guest]

Hi ,

Sorry I haven't been in touch. I'm currently trying to get the house ready

for sale and the off days recovering from the pain in my body that it is

causing. If it wasn't for pain pills I wouldn't be able to get out of bed.

I think that it is great that your daughter is willing to do this for you.

It shows you did something right when you raised her. You should be very

PROUD of her. Is she the same daughter who is taking care of your father?

She must have a great heart. How far are you along in being listed? Is she

the same blood type as you?

I hope everything works out for the best. Keep us updated. We do care.

Debbie (Tommy's Mom)

> [Original Message]

> From: D Cam <mdcam@...>

> Liver Support < >

> Date: 6/1/01 12:35:46 AM

> Subject: [ ] Update

>

>

> Hi Group

> I have posted a couple times about my progress, and the fact that my

daughter wants to be a living donor for me. I even e-mailed Jerry

personally and I have gotten no reply. I don't know if maybe I wasn't

doing something right. I am new to the computer. Hope everyone is well,

I'm glad to hear our girls Genny and Jodi are coming along. It means all

our prayers have been answered. If anyone gets this, please let me know.

>

> Thanks

> in Tustin

>

--- Have a fun day!

--- debbiehenry@...

---

[Guest guest]

Hi ,

Sorry I haven't been in touch. I'm currently trying to get the house ready

for sale and the off days recovering from the pain in my body that it is

causing. If it wasn't for pain pills I wouldn't be able to get out of bed.

I think that it is great that your daughter is willing to do this for you.

It shows you did something right when you raised her. You should be very

PROUD of her. Is she the same daughter who is taking care of your father?

She must have a great heart. How far are you along in being listed? Is she

the same blood type as you?

I hope everything works out for the best. Keep us updated. We do care.

Debbie (Tommy's Mom)

> [Original Message]

> From: D Cam <mdcam@...>

> Liver Support < >

> Date: 6/1/01 12:35:46 AM

> Subject: [ ] Update

>

>

> Hi Group

> I have posted a couple times about my progress, and the fact that my

daughter wants to be a living donor for me. I even e-mailed Jerry

personally and I have gotten no reply. I don't know if maybe I wasn't

doing something right. I am new to the computer. Hope everyone is well,

I'm glad to hear our girls Genny and Jodi are coming along. It means all

our prayers have been answered. If anyone gets this, please let me know.

>

> Thanks

> in Tustin

>

--- Have a fun day!

--- debbiehenry@...

---

[Guest guest]

- you are coming in fine. (mhe3053904@...)

[Guest guest]

Elisheva:

Sorry to hear you had a flare. Hope you feel better soon.

Re pictures, see also our own album on this list at

/files/ChildrensPhotos/

Best regards

Charlie

> First of all I want to say that I'm trying to keep track of

everybody

> here and I'm sure I'll learn soon! I am reading the posts and I

wish

> everybody well, and congratulations to all of the people who are

> doing well, reducing prednisone, etc.

> The news here is that I am having a semi-flare, which would

certainly

> be much much worse if it weren't for the Enbrel. Unfortunately the

> rheum put me on 10mg prednisone, but it shouldn't be for long. I've

> also increased my dose of the Mobic. But compared to before the

> Enbrel I'm still doing fabulously, so I am just concentrating on

> that :-). Also the scan of my wrist showed that no surgical

> intervention can help me at this point, so I just have to have

> another corisone injection. In a way that's good, but I was looking

> for a more long-term solution. Oh well.

> Good news is that tomorrow is my last day as a camp counselor, and

I

> actually made it through the summer! I'm amazed at my energy level

> and my general feeling of being well. I am convinced that children

> who have JRA today are blessed to live in the modern world, where

bio-

> engineered drugs are a reality and a cure may not be too far in the

> future.

> I think this is a wonderful board. I hope everybody continues to do

> well.

>

> Elisheva

>

> p.s. my picture is now up on the JRAWorld website, and I encourage

> more people to put pictures of themselves/their children there as

> well.....it is important that people see how normal we JRAers are!

[Guest guest]

hi bethanne,

glad you are happy with the new doc. its real nice when you can find an office/doc that will go that extra mile!!!!!

take care,

bert.

**HAPPY**HOLIDAYS**

**AND WARM HUGS**

Bert.

Hi!! I just wanted to update you all on what happened with the docs today. I called my new one and they couldn't get me in. However, they had me drop off copies of everything and within 2 hours they called back and raised my dosage of prednisone to 20mg, ordered a bunch of new blood work that I'll have done tomorrow, and ordered me to have LFT's checked again in one week. This office is already way ahead of the game in my book. They are so nice, get back to me, and I'm not dealing with a secretary. They also seem to know what they are doing!! The most important thing of course. I thank all of you for your input and advice. It really was helpful.

Thanks again,

Bethanne

[Guest guest]

Bethanne,

Glad you are happy with new MD. It sounds to me like you are now on the

right track. Hope all goes well with your first visit.