Hello

[Guest guest]

hi all! sorry hvnt posted much cos im so jetlagged for one and the other is

i hv so much mail in my mailbox that im still catching up!u!!!!!! yest i

told myself that at the time i get groggy and sleepy i will stay online so

that way i wont sleep....and i got the worst headache of my life!!!! it

started from above my eye!!!! very strange! i hv never had a headache like

that in my life!! i hope alls ok cos we were in miami and orlando and i hv a

feeling i exerted myself a bit too much! i am going to take it very easy the

next couple of days!!

hope u all are doing well and best wishes for the news yr!!!!!

Karishma.

_________________________________________________________________________

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[Guest guest]

Sue,

I just read your introduction. I hope your daughter is feeling better. My

son is also suspected to have systemic jra, although they won't make a

definite diagnosis until he shows more signs. He is 2 3/4 and has 2

episodes of persistant high fevers, the second of which had us in the

hospital for a week of testing. They too came to the conclusion that it was

a rheumatic problem that had to declare itself. After the fever resolved he

limped one morning and complained of knee pain, with no swelling. He's been

fine since then (1 month ago), until today he woke up with a slight fever

(this is how it always starts), so I know we will have at least 10 days of

this. Hopefully high dose ibuprofen will do the trick, but after hearing

everyone's stories, I'm so frightened of the real joint problems that my be

in front of us. Is your daughter is preschool? How has all of this effected

her school experience?

-

[Guest guest]

,

I was just reading your post and thought I would share my daughter's

progress so far. She has had 105 to 107 fevers every 3 weeks since 3 months

of age. She is now 4-1/2. To date, we still do not have definitive

diagnosis. She too has had joint pain and swelling with no lasting effects,

therefore, they are hesitant to diagnose Systemic. She has had the rash

(seen by Ped. Rheumy), enlarged lymph nodes, enlarged spleen, high sed

rates, etc.

Just try to remain positive. This is such a tricky disease sometimes that

it takes a while for definitive diagnosis. Also, it doesn't affect all kids

the same way. We are thankful there is no ongoing joint damage at this

time, but that is a double-edged sword. No joint involvement, no definitive

diagnosis. Oh well, I always read posts and know that we are lucky to just

be dealing with what we are dealing with.

It gets weary sometimes and I wonder if it will ever end, but I keep hoping

that it will soon ease for her.

Take care.

Angie

Re: Hello

>Sue,

>I just read your introduction. I hope your daughter is feeling better. My

>son is also suspected to have systemic jra, although they won't make a

>definite diagnosis until he shows more signs. He is 2 3/4 and has 2

>episodes of persistant high fevers, the second of which had us in the

>hospital for a week of testing. They too came to the conclusion that it

was

>a rheumatic problem that had to declare itself. After the fever resolved

he

>limped one morning and complained of knee pain, with no swelling. He's

been

>fine since then (1 month ago), until today he woke up with a slight fever

>(this is how it always starts), so I know we will have at least 10 days of

>this. Hopefully high dose ibuprofen will do the trick, but after hearing

>everyone's stories, I'm so frightened of the real joint problems that my be

>in front of us. Is your daughter is preschool? How has all of this

effected

>her school experience?

>-

>

>

>

[Guest guest]

Hello ,

I ran out of room in my first post, didn't realize how much space

I had and how much I had written! The doc did give her the diagnosis

of systemic onset and that is the reason he changed her meds. Going

to try and be real aggresive from the start. I don't know if these

meds are this quick acting but she started them on the 12th and it

seems to be helping the swelling already (high hopes). The time

between her first visit and the second was (still is) very scary

because it seemed to be affecting so many areas. There were times

that she couldn't walk or couldn't hold her cup. She is still

hurting a lot but the swelling doens't look so bad. When she first

got the fevers and rash she didn't have much of a break from them

other than a few hours every day, they were pretty persistent. Maybe

that is a good sign for your son, that he is getting a break from

them. Mackenzie is not in preschool yet. She should start this

coming school year. I am worried about how she will fare there too. I

am concerned about the pericarditis they said she has, did they find

anything like a heart murmur with your son? (What is his name?) Or

maybe anyone else? Is this something that anyone has any experience

with? I am glad I found this list. I think it is very informative and

helpful. I hope I haven't rambled.

Sue

[Guest guest]

Angie,

Thanks for your reply. What do they treat your daughter's fevers with? Is

she on any meds permanently to try to lessen the fevers?

-

[Guest guest]

Sue,

You sound like you are hopeful that your daughter is getting a little better

every day. My son, Zachary, did have a small pericardial effusion (fluid

around the heart) when he was admitted to the hospital. It was very small,

and they didn't think it was going to lead to any problems. Has your

daughter been seen by a peds cardiologist for this? I understand your

worries about preschool, but if you communicate with the teacher and school

in advance, I'm sure they will accommodate your daughter in any way they can.

Although Zachary isn't in any pain as of yet, he has had a lot of emotional

trauma from his hospitalization, and as a result is having a tough time with

separation anxiety. Our teacher in his pre-preschool is very senstive to him

and the situation. We are seeing his rheumatologist later today, so I'm

hoping for some helpful info. Thanks.

-

[Guest guest]

,

She was until 1-1/2 months ago. She was on Plaquenil, Naprosyn & Zantac.

She has since been taken off all those and now, when the fever hits, I give

her Motrin for comfort and a 1 time dose of 40 mg of Prednisone. Prednisone

is a life saver but I hate. She is eating us out of house and home (and she

isn't very big)! Also, the mood swings are terrible. Oh well, you have to

love it and hate it at the same time. We give her the Pred early in the am

and by late afternoon, what was once a 106 fever goes to normal or sometimes

less than normal.

Angie

Re: Hello

>Angie,

>Thanks for your reply. What do they treat your daughter's fevers with? Is

>she on any meds permanently to try to lessen the fevers?

>-

>

>

>

[Guest guest]

Would cashew nuts be considered a no no on a candida diet? Thanks

[Guest guest]

In a message dated 2/6/01 4:45:50 PM Central Standard Time, SCZMS@...

writes:

<< Would cashew nuts be considered a no no on a candida diet? >>

SOme say yes, some say no. The nuts should be plain and unprocessed. You

probably shouldn't eat them every day. Maybe every third or fourth day would

be ok.

[Guest guest]

Hi - welcome to the list!

> tomorrow, as well as the usual Colloidal Silver. Any other suggestions,

> and dietary help?

You probably know this already, but candida's a tricky beast and

develops resistance to antifungals in about a week, so you'll need a

little armoury of different types. Rotate them every 4 days or so to

outwit it. Some good ones are olive leaf extract, oregano oil, garlic,

caprylic acid, or pau d'arco. Get yourself a good-quality probiotic

supplement and take it daily, an hour or so after your antifungals.

Biotin is also useful, as it helps stop the candida growing roots.

Are you seeing a doctor of any kind? If you can, find yourself a

good naturopath, homeopath or holistic nutritionist who has

experience at treating candida and will take the time to get to know

your medical history.

As for the diet, it's not as bad as it...who am I kidding??! It's a

nightmare at first, but you'll get used to it. We're trying to gather

some recipes at http://www.willow-web.net/cookbook/ and there

are a couple of links off that page to useful sites. Another useful

resource is the Healthy Awareness candida forum at

http://www.healthyawareness.com/candida_general/ which has a

support board, a recipe board, a massive searchable archive, and

all manner of petty bickering to take your mind off how you feel!!

Ann

[Guest guest]

Hi ,

Welcome to the group, I know what you mean, I'm so grateful to have found

this group too, as its a tremendous help to me. I wish I knew about it when

I first started dealing with it last year, as I did it for 4 months, but was

missing a vital part of the programme!

Yo could try rotating anti-fungals as anne said so with colloidal silver,

gse and something else. But the diet is the most essential part of the

programme, you could try going low carb for faster results, and you also

need to cut out allergens such as mold (especially nuts like peanuts),

fermented products etc, and anything else that seems to be bothering you.

Good luck

Faisal

hello

Hi there

I have just joined the list, and I am very grateful to have finally found

one that deals with the ins and outs of candida.

I have battled with candida for about 10 years full on, and have had it on

and off for years before that.

It started as Interstitial Cystitis, and then after 18 months, turned to the

itching that never goes away. I have been on a detox. diet for about a

week, and have just got over feeling like my head is full of cottonwool, and

the headaches are subsiding. Also, my blood sugars went crazy, and heart

palpitations abounded! It was awful. I am going to start GSE tomorrow, as

well as the usual Colloidal Silver. Any other suggestions, and dietary

help?

Thanks again

.

Oh yes, the hot spicy thing - when I had my cystitis problems, I was told

not to eat hot, spicy foods, the reason given was that they heat up the

system. Candida could be classified as a " hot " illness, in that it causes

burning and itching - so hot foods could make this worse. Most herbs are

fine, its just more the " hot " ones like cayenne, Tabasco, chilli that it may

be wise to stay away from.

Send blank message to candidiasis-unsubscribeonelist if you want to

UNSUBSCRIBE !

[Guest guest]

I have battled IC also. Stay away from cayenne, caffeine, chocolate, spicy

foods, etc. I am also a bit sensitive to hops too.

I have a book called...You don't have to live with cystitis by Larrian

Gillispie MD. It is really informative. The book tells of many foods that

stir things up.

The spicy food one is so hard for me to do...I love anything hot and

spicy..but that irritates the lining of the bladder.

[Guest guest]

Hi ,

I've found cashew nuts very allergic, as they contain more mold. Test to see if you're allergic to mold, it's usually gives you a mentally foggy feeling. Also, if eat some cashew nuts and can't stop that could also indicate it, as we tend to crave things we're allergic to- that's what happened to me.

Faisal

Re: hello

Would cashew nuts be considered a no no on a candida diet? Thanks Send blank message to candidiasis-unsubscribeonelist if you want to UNSUBSCRIBE !

[Guest guest]

LOL...I just had a mouth full of cashew nuts as I was reading this. Thanks for the rotating tip. Interesting. About 2 years ago I started using CS (colloidal silver) for candida, and was symptom free for 2 months, then it came back. This would explain it. The Lord only knows what I have done to my system not rotating! Do you recommend 4 days on one, then another, then another, then start with the first one again? Am I reading this right?

Can I find a list of what not to eat and what I can eat anywhere? Just want to check it against mine...

Thanks

.

Re: hello

Would cashew nuts be considered a no no on a candida diet? Thanks Send blank message to candidiasis-unsubscribeonelist if you want to UNSUBSCRIBE !

[Guest guest]

I do not have IC anymore. My urethra is still irritable, but I put this

down to the candida. I think there are probably a lot of women diagnosed

with IC, that really have candida as its root cause.

Thanks again

Re: hello

> I have battled IC also. Stay away from cayenne, caffeine, chocolate, spicy

> foods, etc. I am also a bit sensitive to hops too.

>

> I have a book called...You don't have to live with cystitis by Larrian

> Gillispie MD. It is really informative. The book tells of many foods that

> stir things up.

>

> The spicy food one is so hard for me to do...I love anything hot and

> spicy..but that irritates the lining of the bladder.

>

>

>

>

>

>

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

UNSUBSCRIBE !

>

[Guest guest]

> The Lord only knows what I have done

> to my system not rotating!

Don't worry - you've probably jsut got CS-resistant candida now,

but other antifungals should work fine! Get yourself 3 or 4 different

ones, and take them for 4 days each

> Can I find a list of what not to eat and what I can eat anywhere? Just

> wan= t to check it against mine...

There are various lists (oh for a consensus!), but the basics are no

sugar, no yeast, no fermented foods, no wheat (usually), no (or

extremely limited) fruits and no dairy (although there's a question

mark over live yoghurt). This is quite useful...

http://www.infosky.net/~alexmi/candida.htm

....and this is a three-level diet....

http://www.candidapage.com/candiet.txt

Good luck!

Ann

[Guest guest]

Hi Anne,

What wonderful spirit you have. I'm sure we can all learn alot from you.

Coincidentally, you're the 5th person I've met this week who has both GD and

MS. One of the monoclonal antibodies used for the treatment of MS is known to

trigger GD, so perhaps this is the connection. Best to you, Elaine

[Guest guest]

In a message dated 3/15/01 11:54:48 AM Central Standard Time, daisyelaine@... writes:

Subj: Re: Hello

Date: 3/15/01 11:54:48 AM Central Standard Time

From: daisyelaine@...

Reply-to: hyperthyroidism

hyperthyroidism

Hi Anne,

What wonderful spirit you have. I'm sure we can all learn alot from you. Coincidentally, you're the 5th person I've met this week who has both GD and MS. One of the monoclonal antibodies used for the treatment of MS is known to trigger GD, so perhaps this is the connection. Best to you, Elaine

Elaine, I have Graves and no MS..could I get MS? thanks Kim

[Guest guest]

You could, that is, anyone can get MS. But I wouldn't worry about it. It's

more likely to first have MS and then Graves', and you've never mentioned any

symptoms of MS. The monoclonal treatment used for MS patients causes immune

system changes that appear to trigger Graves' disease.

[Guest guest]

HI Elaine, could you please post the publishers name or website for your

book? I want to order today but left the info at home, Thanks, Mona - So

when do you go on Oprah?

Re: Hello

You could, that is, anyone can get MS. But I wouldn't worry about it. It's

more likely to first have MS and then Graves', and you've never mentioned

any

symptoms of MS. The monoclonal treatment used for MS patients causes immune

system changes that appear to trigger Graves' disease.

[Guest guest]

Hi Mona,

It's www.mcfarlandpub.com and the title is Graves' Disease, A Practical Guide

,

Haven't heard back yet from Oprah yet, but when they call, ha, I'll arrange

for this summer.

Yow, I went to the dentist Friday, and they decided to check one of my bridge

because he thought there might be some decay under the crown. There was so

much decay they had to yank the darn thing off. And I have to go to a

periodontist for a crown elongation before they can start replacing it. Yuk,

my mouth is so sore I've been eating candy to feel better which hasn't

helped. So now I'm spraying chloraseptic on it to numb that side. I'll swear

this all has to do with the GD.

[Guest guest]

Mona, -- so rub it in - ha,ha! WHERE is the weather so beautiful ? Helen

[Guest guest]

Hi Mona,

I'm glad to hear you know what a crown extension or lengthening is. I already

had a root canal on that tooth. I only know because they mentioned Friday

seeing the hole for it. I remember having root canals done but had no idea on

what teeth. Do you recall the crown extension being painful?? I know when

they trimmed my gums the last time I was in pain all weekend, and I seem to

recall thinking it was the worst pain I ever had. I just want to make sure I

have a day or two off afterwords if that's the case.

They're going to see how much annual dental money I have left. Even with

double insurance, I've probably used most of it already and March isn't even

over. If I have, they'll put temps on everything and we'll do the bridge over

next January. That would be OK with me because maybe by then they'd be

certain all the infection is gone. I somehow think that the original abscess

that caused me to lose the tooth and the last two bridges is still lingering.

They didn't prescribe antibiotics but I have a stash which I'm using now.

That has helped some of the pain.

And numbing it with chloraseptic really helped.

How this all started: I once had a really bad toothache, and I didn't have

time to go to the dentist. So I used clove oil, and boy did it work. The pain

was gone and I forgot about the tooth. By the time I went for my regular

checkup, the tooth was so abscessed it had to be pulled. Maybe today they

would have done more to save it, but at the time they didn't. I remember it

hurt really bad at work afterwords and the dentist had me put a tea bag in it

to stop the oozing. I don't think I was ever given antibiotics.

Anyway, my other bridge is from breaking a tooth while eating a carrot during

the height of my Graves' phase. How did things start going awry for you?

Elaine

[Guest guest]

Hi Elaine....almost time to go home. I know exactly what that is...a crown

lengthening. They have to go below the gumline. I have one with a root

canal and the crown still fell off (getting extracted) and the one next to

it also requires a crown lengthening but they think I should extract it too.

I'm having a removable denture on the bottom (to replace empty spot on right

side and now it will be balanced on left side). I really don't want to

extract the second tooth but often the crown lengthening don't work. Sorry,

don't mean to scare you. When my bite is back then I will go back for an

implant on both sides. Doing what I have to for now to get my bite back.

Do you need a root canal too? It never ends does it?

I decided I want the dentist to replace the temporary bridge NOW instead of

waiting - I still believe this is the root (no pun intended...hahaha) of my

problems.

I understand how you feel....my teeth hurt all the time now (probably from

the splint). Not much fun eating anymore, probably why I've lost so much

weight.

Can't wait to get your book. The weather here is beautiful!!! Warm, sunny

and windy, perfect weather. Gotta go, hope you feel better. Too bad we

don't grow a third of teeth - senior version...hahahha Take care, Mona

Re: Hello

Hi Mona,

It's www.mcfarlandpub.com and the title is Graves' Disease, A Practical

Guide

,

Haven't heard back yet from Oprah yet, but when they call, ha, I'll arrange

for this summer.

Yow, I went to the dentist Friday, and they decided to check one of my

bridge

because he thought there might be some decay under the crown. There was so

much decay they had to yank the darn thing off. And I have to go to a

periodontist for a crown elongation before they can start replacing it. Yuk,

my mouth is so sore I've been eating candy to feel better which hasn't

helped. So now I'm spraying chloraseptic on it to numb that side. I'll swear

this all has to do with the GD.

[Guest guest]

I, MonaB am on the East coast where we had dry weather and now rains. Glad my name sake, Mona, is in better conditions. Never was so glad to see rain after having water shortages and limitation on usage.

MonaB