Re: Newbie Introduction

[Guest guest]

Welcome Meg!

I, too, have Rh negative blood and sero-negative RA blood panels!

Although my doc and I haven't come across any proof, I feel as though

there might be a connection between the two conditions. In fact my

doctor had to convince me that my test can be negative seroand still

have RA!

My daughter has horrible allergies (5-6 scale), and I give her her

weekly shots. She has done wonderfully well with this treatment; does

your allergist mix your formulas him/herself?

I read an article awhile back about pain mamgement for autoimmune

diseases, and it said that one should " beef " up on calcium and

magnesium intake. i have, and it does help me during the day time for

pain.

Best of luck with your new doctor!

~~~~

[Guest guest]

Hi Meg,

Hello! It sounds like you've had just an awful time. So sorry.

Are the doctors you've been seeing rheumatologists or GPs? I also find

having a younger doctor makes a big difference. My symptoms started shortly

after my 22nd birthday (I'm nearing my 25th). I was in my last semester at

college, ready to embark on the next part of my life when it hit. It was

awful, as you know.

Personally, having children has never been a priority for me (I figured I

would rather adopt anyway), but the thought that the choice may be taken

from me makes me mad. I choose to take a lot of meds for my arthritis

because otherwise I would not be able to function (without them I can barely

tie my shoes).

I'd love to talk to you about how you're dealing with being young with

arthritis. Feel free to email me directly if you like.

Take care,

, age 24

Culpeper, VA

RAA & AS

Well if you got this far through my book I thank you for caring! I

>hope to get to know all of you and learn a lot more than I have. I

>do not know anyone with RA, and I am especially interested in getting

>to know some people in my age range, although all frieds and support

>are more than welcome!!!!

>

>Best of luck to everyone!!! xoxo

>

>

>

>

>

>

>

[Guest guest]

,

Thanks for responding! Honestly I havn't really been " dealing "

with this until recently. When I was first diagnosed I was mostly

relieved to know I wasnt crazy (well not completely at least lol) and

it is just now really sinking in because of how bad things have

gotten.

I love my new doctor and she is much younger, probably mid-40's

with 3 young kids, I'm hoping this will make it easier for us to

connect! Both docs are rheumatologists. My GP has been a backbone

in getting me help and is always there when I need her but knows that

she doesn't know enough about RA to give me the care I need. (Yup

she's pretty great too!)

My biggest obstacle right now is that I havnt been able to go to

the gym in over a month. I was really getting used to being able to

be active again, even if it was somewhat limited. Well, if all goes

well today, tomorrow I am going to start swimming laps again, I need

to do something!!!!

[Guest guest]

,

Thanks for responding! I just got back some blood work and still

negative RH factor, don't know if thats good or bad lol. I did start

taking extra calcium about 6 months ago & didn't really notice a

difference. My doc wanted me to stop because she thinks I am

developing Gall bladder problems and I guess that can affect it

(???)

My allergist mixes my shots each week, I get 3 every Monday and up

until recently Ive been doing really well on them and really noticing

a difference. This is the first spring though since I started and Im

sneezing some but I can deal with that!

My new doctor is fantastic! She has did more for me in one weeks

time than my other did over 8 months! She ran blood tests and

actually called me to discuss the results herself so that I wouldn't

have to come into the office! She also scheduled a full body bone

scan and full xray work up of my hands for next Tuesday...I havnt had

any xrays at all since this all started! She told me she wants to

find out which joints are the worst right now so that we can tackle

those first.....she's really proactive and I love & need that so

much! If anyone lives in FFld Cty CT or the area I definatly

recommend her!!

Has anyone had a bone scan done? (probably! lol) Im kinda nervous

about the injection since I tend to have allergic reactions to

EVERYTHING now!

[Guest guest]

Well I had the scan yesterday, as well as a big xray work up on my

hands. Everything went well, I felt a little 'off' about an hour

after the injection (like tingly everywhere) but who knows if that

was all in my head or not! I actually started falling asleep on the

table but just like you I had the twitchies and it kept waking me up

(too bad! I needed a nap!) The tech was great, he even had to

restart the test after the first 10 minutes because my legs were

jumping all over the place, he rubbed them a bit and then put a

rubber band around my feet to hold them still lol. After that it

wasnt so bad just little ones here and there, he said they were clear

enough and set me free!

Can't wait for the results though!!! Im flying to FL in about 2

weeks and Im kinda worried about the humidity and all the changes and

how it will affect me, I went in November and I was very swollen

while there, guess we will find out! Im just visiting Grandma so

there won't be tons of walking (she had a hip replacement in November)

[Guest guest]

Hi and welcome to the group. In my 2 yrs. of research & reading I have read

some things that discuss a connection with environmental issues & Autism.

Certainly wouldn't surprise me. If I run across any of the information I'll

make sure to pass it on to you.

Sue

would be very interested in hearing from anyone who believes there

is a connection between toxic mold and autism . It is my own

personal belief that there is a connection, but I have found very

little research in that direction.

I'm just so excited to read some of the stories in this forum. It

just makes me feel good to know that others have been through this,

and so maybe I'm not crazy...KWIM???

[Guest guest]

Hi! I would like to thank you all for your super-quick responses! My

goodness, I was suprised how quickly people responded and all of the

helpful information that was shared!!!! I can already tell this is a

great group of people! Thanks so much!!! (I just hope I am posting

this response right... I'm not real familiar with the format of these

yet.)

To those of you who were interested in the diet I am on for the MCS,

it is called the MEVY diet by my doctor. That stands for meat, eggs,

vegetables, and yogurt. I can also eat green apples, grapefruit,

nuts (except peanuts), seeds, and some cheeses. No starchy veggies

like potatoes, corn, peas, ect. I feel like this diet has saved my

life. I've been on it for about 1.5 years. A little difficult at

first, but now I almost despise sugar (mostly because I know how I

react to it.) I have discovered I can't handle the yogurt part of the

diet either, or I get symptoms. Just recently I though I was feeling

so good that I would cheat a little on the diet...big mistake! Some

of my sensitivities started to return.

As far as supplements I rotate natural antifungals (OLE, GSE,

oregano oil, caprylic acid), magnesium, psyllium husks tabs,

chlorella, CoQ10, multivitamin, and something called Cellfood.

If anyone has more questions just let me know!

> >

>

[Guest guest]

Hi and welcome

I am also new here - what symptoms do your children have?.

I found this the other day about autism and neurotoxins (like produced

by molds)

read on page nr 5

www.hypertc.com/testimonials/2005_September_Newsletter_email.pdf

Greetings from Iceland, europe

mygla

>

> Hi! I would like to thank you all for your super-quick responses! My

> goodness, I was suprised how quickly people responded and all of the

> helpful information that was shared!!!! I can already tell this is a

> great group of people! Thanks so much!!! (I just hope I am posting

> this response right... I'm not real familiar with the format of these

> yet.)

> To those of you who were interested in the diet I am on for the MCS,

> it is called the MEVY diet by my doctor. That stands for meat, eggs,

> vegetables, and yogurt. I can also eat green apples, grapefruit,

> nuts (except peanuts), seeds, and some cheeses. No starchy veggies

> like potatoes, corn, peas, ect. I feel like this diet has saved my

> life. I've been on it for about 1.5 years. A little difficult at

> first, but now I almost despise sugar (mostly because I know how I

> react to it.) I have discovered I can't handle the yogurt part of the

> diet either, or I get symptoms. Just recently I though I was feeling

> so good that I would cheat a little on the diet...big mistake! Some

> of my sensitivities started to return.

> As far as supplements I rotate natural antifungals (OLE, GSE,

> oregano oil, caprylic acid), magnesium, psyllium husks tabs,

> chlorella, CoQ10, multivitamin, and something called Cellfood.

> If anyone has more questions just let me know!

>

>

>

> > >

> >

>

[Guest guest]

There's a group lyme and autism and there's several of us that

are considering this as one of the contributing problems. My son is

ADD and was brought home as a newborn to a trailer home with black

mold on the window sills- never thought a thing about it, but now am

also wondering if this didn't contribute. He's 19 now Rose Marie

> >

> > Hi! I'm a newbie here, and I'm thrilled to have found this

> forum!!!!

> > Two years ago I was exposed to heavy amounts of Aspergillus mold

in

> > our basement, and my life has drastically changed since then.

Back

> > when this first happened I thought I was having a heart attack

or

> > stroke, and made no connection to the mold (I was only 28 at the

> > time.) I then started having major MCS and many other odd

> symptoms.

> > Through the grace of God, he led me to the discovery that mold

can

> > cause many bizzarre health problems (despite many doctors

telling

> me

> > mold only causes respiratory and skin reactions!!!!) Through

diet

> > changes and supplementation I am feeling almost back to normal,

but

> > it has been a LONG road!!! I recently had to turn down a new

job,

> > because after being there 2 hours many of my old symptoms

> returned.

> > The building was old, and I'm guessing moldy.... I call myself

the

> > human mold detector now...LOL.

> > Unfortunately I think my 2 children were affected by this ordeal

as

> > well. They both have varying degrees of autism.

> > I would be very interested in hearing from anyone who believes

> there

> > is a connection between toxic mold and autism . It is my own

> > personal belief that there is a connection, but I have found

very

> > little research in that direction.

> > I'm just so excited to read some of the stories in this forum.

It

> > just makes me feel good to know that others have been through

this,

> > and so maybe I'm not crazy...KWIM???

> >

>

[Guest guest]

Sorry, everybody is 'guessing' there is a connection between autism

and mercury. No one KNOWS and it hasn't been proven. I know of

several kids that are unvaccinated and are autistic. More and more

people are finding that there is a connection between autism and

lyme. An underlying intracellular infection 'may' be the cause of

autism as some kids are recovering on abx treament for mycoplasma

etc. With toxicities like mold, chemicals (including heavy metals),

etc the innate immune system is affected letting the intracellular

infection(s) to spread to the CNS. Getting the immune system

stronger by removing as many toxins as possible and addressing

underlying infections is the key.

JMO

Jay

>

> > Hi! I'm a newbie here, and I'm thrilled to have

> > found this forum!!!!

> > Two years ago I was exposed to heavy amounts of

> > Aspergillus mold in

> > our basement, and my life has drastically changed

> > since then. Back

> > when this first happened I thought I was having a

> > heart attack or

> > stroke, and made no connection to the mold (I was

> > only 28 at the

> > time.) I then started having major MCS and many

> > other odd symptoms.

> > Through the grace of God, he led me to the discovery

> > that mold can

> > cause many bizzarre health problems (despite many

> > doctors telling me

> > mold only causes respiratory and skin reactions!!!!)

> > Through diet

> > changes and supplementation I am feeling almost back

> > to normal, but

> > it has been a LONG road!!! I recently had to turn

> > down a new job,

> > because after being there 2 hours many of my old

> > symptoms returned.

> > The building was old, and I'm guessing moldy.... I

> > call myself the

> > human mold detector now...LOL.

> > Unfortunately I think my 2 children were affected by

> > this ordeal as

> > well. They both have varying degrees of autism.

> > I would be very interested in hearing from anyone

> > who believes there

> > is a connection between toxic mold and autism . It

> > is my own

> > personal belief that there is a connection, but I

> > have found very

> > little research in that direction.

> > I'm just so excited to read some of the stories in

> > this forum. It

> > just makes me feel good to know that others have

> > been through this,

> > and so maybe I'm not crazy...KWIM???

> >

> >

> >

> >

> >

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

--

As far as the diet, it has 2 different phases. You are supposed to

start out with only meat, eggs, veggies, and yogurt for 2 to 3 weeks.

After you see improvements you can gradually add in nuts, seeds, sour

fruits like lemons,limes,grapefruit,green apples,and some berries

(although I can't tolerate the berries.) The cheeses I can tolerate

include mozzerella,colby,cheddar,and cream cheese...I have a yummy

recipe for sugar free cheese cake...yum yum!

As far as drinks I pretty much stick to filtered water, but you can

have herbal teas, and homemade lemonade sweetened with stevia.

Pretty much all sugar free spices are allowed.

- In , ssr3351@... wrote:

>

>

> Diet sounds interesting! I'd like to know more about it. What types

of

> cheese,others fruits, what do you drink, spices, etc.

>

>

>

> To those of you who were interested in the diet I am on for the

MCS,

> it is called the MEVY diet by my doctor. That stands for meat,

eggs,

> vegetables, and yogurt. I can also eat green apples, grapefruit,

> nuts (except peanuts), seeds, and some cheeses. No starchy

veggies

> like potatoes, corn, peas, ect. I feel like this diet has saved

my

> life. I've been on it for about 1.5 years.

>

>

>

>

>

>