Frustrated

[Guest guest]

Cheri,

An Environmental Medical Specialist MD should be able to help you with heavy

metal poisioning (1-800-538-4325). My experience with them has been great, they

tend to look at the whole picture and were covered by my medical insurance.

Good Luck!

MA

I

------------------------------------------------------------------------ZZXX

[Guest guest]

Hi Everyone,

I have been having alot of trouble finding a doctor that treats for heavy

metal poisoning. It has been extremely frustrating. It seems that most

internist do not

have any knowledge regarding my condition. My insurance plan had no one to

send me to for the treatments.

I am in St. Louis which has a large medical community. I finally had a friend

of mine

ask around. She is an internist. She found that only the University had

anyone that was knowledgeable about heavy metal poisoning. I am now in the

process of trying to get my insurance to pay for my visit.

I think this is why we need to educate ourselves about these diseases. My

friend admitted that she would have never sent in a hair analysis. She said

that they are just not trained to look for these types of problems.

I just wanted to stress how important it is for everyone to get a hair

analysis done.

Cheri

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

[Guest guest]

SHU

this is something we will have to face each day

i can understand how you feel

right now i am also fustrated because of this

maybe in a different way

melissa was doing better shes one this voltaren upped to 3 times a day now

she has slight swelling if any right now

BUT since school started aug 21st 2000 shes been out 10 as of today

shes keeping up at school and with tests we are doing those

in the afternoon 1 day a week so she is on her level

but what is getting me is i feel bad when she hurts and i know she should be

going to school to and know HOW important education is

but what do i do MAKE her get up and hurting bad

and get a call stateing i am doing wrong from the school or keep her out due

to this and get a call from them stateing shes not in school enough

i went to my neighbor to ask her this and she said let her stay out

when she is haveing trouble

SHU

i can only say this its a chronic disease life long adjustments

and WE have to do it one day at a time

the joints hurt even if there is no swelling

i know this from last year when melissa would say shes hurting

and i didnt SEE anything wrong but inside she felt it

make sure you keep up with appointments and listen to how she is doing

and let the doctor know this will get a team between home and the doctor

going even if you think its nothing to mention it might be what the doctor

might think is important

we are here for each other that is what this group does :-)

keep your chin up and enjoy the good days :-)

and bear the bad days

Robbin

[Guest guest]

SHU

something else with this JRA i have noticed and read

its a immune thing

this means these kids can easily catch a cold and catch anything easily

the immune system is low

SO this means if you know someone is sick PLEASE tell them to not come see

you

or come by this keeps your child protected

BUT we cant be to protective cause we dont know when we go into the stores

with melissa i make sure she eats good and washes her hands ALOT and

pray she learns to do this at school also

winter time is the time melissa stays inside alot except to school

and appointments not only does she have JRA (poly) but she has asthma

and this so far has helped her with meds for the asthma

with adjusting her enviroment more controlled

Robbin

[Guest guest]

Also, Echinacea is not a good thing for our loved ones with RA to take. My DC

said it had something to do with the auto imune system, it was so long ago, I

don't recall the specifics. Just wanted to let others know. I know I had

on it till I was told no

[Guest guest]

hi shu, i am in remission also and still have regular jra problems

sometimes. there are triggers out there all over the place. stress,

emotions, sudden or major weather changes, accidents, over use, being around

someone sick always makes me flare. i try not to take my pains and aches

out on other people but its hard, when you are hurting and still have to get

up and carry on. i dont know what its like to be a parent and watch someone

go thru this, but i'm sure you are doing your child a great justice by

caring the way you do and that it helps strengthen them to see you fight

with them like that. dont give up and they wont, brandy

_________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

Share information about yourself, create your own public profile at

http://profiles.msn.com.

[Guest guest]

Take heart Shu. You are doing all you can for your daughter and you are doing a fine job. We all empathise with you over how frustrating this ailment is. Sometimes the Dr's seem cold when they say things and don't stop to think how we are facing our childrens suffering 24 hours a day and really need them to be more understanding. Guess this is why JRA list is here. A place to come and vent.

Take care and know we are here for you.

[ & Skyler]

Frustrated

Hi. I know my daughter is in"remission" But she keeps haveing joint pains. There is no swelling. The DR says well you know this will be lifelong. She seems to be getting "sick' easlily again. She is cranky and uncooperative. Her labs were normal, but they want to do more-She passses out at the sight of blood. I find this disease so frustrating. Her eys are still bothering, her. I guess we go back to the eye DR today. They took her off the Pred-drops a week ago. I guess I should except that even children in remission still have troubles.We are so lucky its not worse, but on her bad days she feels terrible. Thanks for listening SHUFor links to websites with JRA info visit: http://www.geocities.com/Heartland/Village/8414/Links.html

[Guest guest]

Its just so strange to me that remisssion has problems too. But I appreciate

everybodys feedback. Thank you SHU

[Guest guest]

Thanks , That response brought out the tears. That was a beautiful

thing to say

[Guest guest]

,

You are only verbalizing what we all feel. Sometime I think we have to have

a crutch in hand or a cast on a body part or be in a wheelchair for people to

understand that we may not look sick but drag in to work at times when we

feel horrible. This and the inability to do about 1/5 what I know I have

done and what I want to do are the 2 most frustrating parts of coping with

AIH. I can take the bleeds, and 20+ pills I have to take a day and all the

other crap that goes along with it if I thought I would return to normal.

But then I think what's normal anyway.

I just am glad that the 20+ pills have kept me as healthy as they have. So

I'll stop complaining and go to bed too.

I hear you and understand.

Good for standing up for yourself. I'm proud of you.

[Guest guest]

, no problem with ranting and raving. Is there a possibility that you could drive alone and stay in a motel room? Just a thought. BUT you must stand up for yourself! You cannot serve these kids if you are not feeling well at all!

Debby

[ ] Frustrated

I am so frustrated with the world tonight. I mentioned a couple of weeks ago about the trip the class I sponsor has planned for this weekend. I told the other advisors then that I would not and could not go on the trip because of my health. I told them that I really wanted to go (I truly do) but that I just did not have the endurance/stamina for the long days. I thought that they understood, but today the other woman sponsor said, "I just don't understand why you can't go. You have worked so hard with this class. Surely, you can rest on the bus if you get tired." Then she continued with the whole guilt trip.I wanted to scream in her face, "The bus is not the most ideal place to rest!" What is really sad is that I was nearly sucked in to this guilt trip and came very close to giving in. I feel bad that I can not go with them, as the trip would be a blast. I know in my bones that I would be exhausted and probably get sick afterwards because of the lack of rest.I feel good that I stood up for myself, but how many times do I have to explain myself to my "friends"? How do I stress to them that I know my body and my limitations so that they get the message?Sorry for ranting. I am tired and hungry. I know that bedtime will come early tonight.

[Guest guest]

Dear ,

I am so proud of you, but I also know how frustrating it is to try

and explain what your limitations are. People can't possibly know

unless they have experienced what you have. I am praying for you. I

wanted to tell you that your resolve to go to bed earlier and to take

extra care of your health has been a tremendous encouragement to me.

I find so much strength from you and others in this group who help me

realize I am the only one who can take care of " me. " Thank you for

standing up for yourself and modeling that for the rest of us.

Ruth

> I am so frustrated with the world tonight. I mentioned a couple of

> weeks ago about the trip the class I sponsor has planned for

> this weekend. I told the other advisors then that I would not and

> could not go on the trip because of my health. I told them that I

> really wanted to go (I truly do) but that I just did not have the

> endurance/stamina for the long days. I thought that they

> understood, but today the other woman sponsor said, " I just

> don't understand why you can't go. You have worked so hard with

> this class. Surely, you can rest on the bus if you get tired. "

Then

> she continued with the whole guilt trip.

>

> I wanted to scream in her face, " The bus is not the most ideal

> place to rest! " What is really sad is that I was nearly sucked in

to

> this guilt trip and came very close to giving in. I feel bad that I

can

> not go with them, as the trip would be a blast. I know in my

> bones that I would be exhausted and probably get sick

> afterwards because of the lack of rest.

>

> I feel good that I stood up for myself, but how many times do I

> have to explain myself to my " friends " ? How do I stress to them

> that I know my body and my limitations so that they get the

> message?

>

> Sorry for ranting. I am tired and hungry. I know that bedtime will

> come early tonight.

>

>

[Guest guest]

Well, I'm not even frustrated today but I still am hitting the wrong buttons and sending blank e-mails!

, I know how you feel. It's like when I go to lunch or go visit for a few hours, I get tire because I am always "on". And when you are with a group of kids, you are never "off duty", you just can't be. You really did the right thing but I know how hard it is not to do something you really want to knowing you would end up paying too big a price health wise. Use the weekend to rest up and be ready for excited kids to tell you all of their experiences when they return!

Amy

[Guest guest]

Ruth..you have every right to vent...Somehow you must see a Heptologist.

What's really wrong with the health care system , besides HMOs is.....

now listen up !...... these doctors all seem to be just taking tests

and.... PRACTICING. what we need are doctors who are IN THE GAME! you

can only practice so much and at some time you got to show what you have

learned.

Ruth I really feel bad for you and pray that soneone will listen and

help you.

love jerry

[Guest guest]

Ruth,

If your HMO does not have a Hepatologist on the panel of MD's you can request and Out of Network authorization to see one. Certainly, with a diagnosis of AIH you would be granted that request. You may have to argue the point however, if there is not a specialist for your problem in their panel have your GI doc or PCP write a letter for you requesting that they feel it is "medically necessary" for you to go.

I know there are a lot of people here who see GI doc's that have a lot of experience with AIH, I think Harper is one of those. I also know that in a smaller town your GI doc's may not have as much experience as those in a larger community dealing with AIH patients. Mine doesn't and that's why I see a Hepatologist who is 2 hours away along with the GI doc who works very closely with the Hepatologist. They work very nicely together for me and it's a reassuring thing to know if I have a bleed again I can get to a local hospital quickly and have the assurance that the GI is in total contact with the Hepatologist.

Don't give up if you feel you need to see the Hepatologist.

[Guest guest]

Hi Holly,

I started out pretty much the same way..(only I'm much older).....and I had

an MD that had lyme disease.......and she dx me as depressed. I went three

years before a definitive dx. Of course by then, only my true friends

remained. You really do find out who your real friends are when you become

chronically ill.

All I can say, is hang in there, you have to keep searching for the right

abx and treatments that will help you the most. I too am grateful for my

mom, even through she is an hour away. I live alone, and had to endure this

horrible disease mostly by myself. I am now in remission, and just came in

for the third time removing all this snow.............gosh two feet is so

much.......six months ago I couldn't get off the couch.

It will take some time, and you will feel worse before you feel

better.........but hang in there..........keep searching for the things that

will help you the most.

I have beat this disease three times............three separate TICKS, two

sent to labs and were positive.!!

At times I thought I was going crazy............and wanted to give up. But

I didn't......rest, research, and try a variety of treatments, until you

find what works best for you........I found switching of abx important in

killing off the different strains. Talk things over with your Dr.......and

your mom and between the three of you, I'm sure you will find the right

path.

Conniek nwnj

Leave no stone unturned!

It must happen in your mind before it happens in your life !

[Guest guest]

Holly,

My sympathies to you as well! I'm not 21, but I hand around with a lot of 21

year-olds (I'm a college professor), and have seen how frustrating chronic

illness can be for someone who is so eager to enjoy those golden college years.

There are such dark, desolate passages through the tunnel that is this disease.

I think we've all been there, at different levels and different depths. But the

light DOES break through on occasion! Now that you are getting the treatment you

need, you have every reason to hope for much better days - - and nights out on

the town with new friends, for whom you will have an enhanced capacity to care.

I've only been fighting the fight for six months, and have been surprised at how

low the lows can be. In those times, the true sources of comfort have been my

immediate family and my relationship with God - - two unconditional sources of

acceptance. On both counts, this disease has brought me an increased intensity

of devotion that I will count as a great blessing from the ordeal. The other

source of comfort are the good folks on forums like this one. Aside from those

who are very closest to us, it's just impossible to expect others to understand.

I certainly couldn't have before going through this. They measure our health as

you would someone suffering from a terrible bout of flu - - when you don't get

better quickly, they become (perhaps subconsciously) somehow impatient or

suspicious. I don't think most people intentionally respond that way. Most of us

just aren't equipped to be as compassionate about long-term chronic illness as

we are about terminal illness. Unfortunately, you have to live it to understand

it.

Feel free to lean on us here as much as you need to. And do seek out other

support groups too. There are many people out there who understand perfectly and

who will say the right thing at the right time to help you find perspective and

hope. That's certainly been my experience!

Very best to you, Holly. Don't despair! You can lick this! Try to be patient

(the humongous challenge for us all) and always hope!

Jeff

[Guest guest]

Hi Holly,

Reading through your message we all feel so gypped in what our lives could

be like. I look back and wonder how I did accomplish what I did even though

I probably have had Lyme since I was very little. Somehow we find others

that care enough about another and that makes our lives worthwhile. Those

selfish individuals maybe someday will realize that set backs do happen and

the shallowness and immaturity that they display will one day catch up with

them.

Joining the list will help you. But always keep in mind that we have to find

some little thing that helps us feel better about ourselves. Not being able

to get out and especially missing out on college or a job makes us feel sort

of misplaced, inadequate. We do need the time to get our heads on and come

to grips. A short mourning period. But try not to dwell on it. Call your

girlfriend, meet her for lunch and tell her how bad you feel that you had to

let her down. Tell her you care. And make a point of meting up with her now

and then if only for an hour or so. You need some activity now and then when

the good hours do appear.

Be sure to ask questions and if you feel low, let us know. Some of us old

geezers with try to send some cheer your way.

Barb

Michigan

---

Outgoing mail is certified Virus Free.

Checked by AVG anti-virus system (http://www.grisoft.com).

Version: 6.0.454 / Virus Database: 253 - Release Date: 2/10/2003

[Guest guest]

Bridget: you are such a uniquely wise soul. No matter how uphill the

battle, human character always wins out. Lyme can't touch this kind of

wellness.

Best wishes for a very good and healthy existence,

Donna

[Guest guest]

Holly,

Hi, I'm also 21 yrs. old and have been experiencing Lyme related

symptoms for at least the past two years. I should be a junior in

college right now...but I've been away since finals of sophomore

spring semester. I understand all of your frustration...sometimes it

really just seems to consume your mind and soul. You are very lucky

though to have someone close to you who understands how annoying this

disease really is to a person. In the course of my doctor visits, my

dad tracked and recorded some weird symptoms he was having only to

discover he also has Lyme. I am not at all happy that he too has to

deal with this disease but it is comforting to know that someone

understands the same emotions and pain that I experience everyday.

Not only can I relate to my dad, but my almost 12 yr. old Australian

Shepard has pretty bad arthritis (if not also Lyme)...and she's been

a true lifesaver to me when I'm home alone and down-in-the-dumps.

*Here comes my advertising plug for animals as frustration relievers

for the entire chatroom: Animals make wonderful companions to the

sick! There are many options for those whom experience allergies.

Humane societies/Rescue shelters make it possible to purchase a

spayed/nuetered pet for a reasonable fee and the time commitment

beyond love and attention towards caring for a pet is not that great.

As Voltaire said, " The art of medicine consists in amusing the

patient while nature cures the disease. " * I truely understand Holly

what it is like to lose some of your friends and/or to have them

misunderstand how your disease is affecting you. The really important

thing for you to do is to really stick with those friends who have

stuck with you and to search for others who can help you in your

recovery. From your post, it sounds like you have a great mom, you

definately have found a top-notch support group on-line and maybe if

you need more company at home...a pet could also be an option. And if

you ever need to vent some frustration you can always email me

personally or in the chatroom too! You will get your life back...

Bridget in MN

[Guest guest]

Hi Connie,

You do sound a little depressed and I've been there so I know. I've been

working on returning my health for over a year now and am having good response

with taking multiple antioxidants, lots of Vit C 8-10 grams a day, not

milligrams (8,000mg-10,000mg) if you do it that way. A website that I've been

using is

themodernherbalist.com, there are lots of products for candida sufferers like

us. I' used his candida cleanse system but could not do this for 12 weeks. I

did about 6wks and felt better. I do eat alot of the candida diet still but I

do cheat a few times a week. I also have been using enzymes with meals called

candidase, biotin, flaxseed oil, probiotics, and spriulina. You can get these

at your local health food store. I recently added cocunut oil to my diet and am

ingesting 1tbsp daily at this time. On the website I gave you there are many

candida killers to help, because diet alone won;t do it,,,it's really hard.

But most of all, you have to make your life liveable for you. Iknow I should

probably not cheat but I can't live without any prospect of sweets or a drink

now and again. I seem to tolertate it and exercise regularly. Do what's best for

you and listen to your body. Oh, I also take panthethine for energy and

bovine colostrum...I've been taking these for almost 8 mos, and have normal

energy

level back. Goodluck, get the " Yeast Connection " book it's very helpful.

Kim in NJ

[Guest guest]

Connie,

Another source if information including the great info you just got,

is available at the following site. Look at some of the diet and

recipe references.

http://www.panix.com/~candida/

When you feel frustrated, and you will....remember you are not alone

and this site is available to you 24/7. Another good site is

[Guest guest]

Connie, here is the other site...it is another chat room with alot of

other informed people.

http://www.healthyawareness.com/

[Guest guest]

Thanks so much for the help. Connie

-- Re: frustrated

Connie, here is the other site...it is another chat room with alot of

other informed people.

http://www.healthyawareness.com/

[Guest guest]

:

Thanks for that web site... it is really GOOD!

Kindest regards,

Sheila Asleson

http://www.panix.com/~candida/