Re: Digest Number 726

[Guest guest]

Hello, I'm not certain if this message will reach out as I have Web tv

as my server. This is just a test as I am ready now not to be just an

observer. Can't believe that my first message will state of all things

that I too as a single female with CFIDS,would love it if there were a

dating service. Thank-you for everyone here on this site,it has been a

life saver to know that I am not alone in this illness.

[Guest guest]

It seem to be difficult to provide something like this because we all live in

different parts of the country. Wouldn't it be better to arrange this in local

support groups and other disability

groups? Travel is such a difficult issue for " us " .

Steve

karenchambers@... wrote:

> From: karenchambers@...

>

> Hello, I'm not certain if this message will reach out as I have Web tv

> as my server. This is just a test as I am ready now not to be just an

> observer. Can't believe that my first message will state of all things

> that I too as a single female with CFIDS,would love it if there were a

> dating service. Thank-you for everyone here on this site,it has been a

> life saver to know that I am not alone in this illness.

>

> ------------------------------------------------------------------------

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>

> This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

[Guest guest]

In a message dated 3/3/00 1:02:49 PM, onelist writes:

<< EPD has the distinct apparent advantage that it appeas to effectively

treat

a very wide variety of immune and autoimmune disorders. (They list

autism,

ADHD, asthma, irritable bowel disorders........) >>

:

A couple of years ago I tried the EPD shots. They really are a pain in the

butt, because you have a very limited diet before and after for a couple of

days and your house has to be spotlessly clean! The first shot I had was not

a problem. When I had the second one I felt really wierd for about an hour

afterward, almost as if I were disassociating and feeling a little faint. I

told the dr. about my reaction while I was having it and he said it was

nothing. The third time I had the shot, I couldn't talk very well for about

an hour and felt even worse than after the second one. Couldn't think worth

a flip either. The dr. would as me a question and I would answer, slurring,

but I would talk about something entirely different. He said this happened

occassionally, but it was nothing to worry about. The next morning I was

taking a walk with my mother and notice a kind of leak from my rectum. It

wasn't diarrhea. God knows I have had plenty of that! When I checked my

underwear, it had something on it that looked like clarified butter.

It really scared me. It definitely was not urine. Went to a

gastroenterologist. He didn't have a clue what it was and said it was

nothing to worry about. Did an echo of my liver and said there was nothing

wrong with it. Since then I have read something about steatorrhea, which is

yellow diarrhea. Something to do with billirubin. This is a real diagnosis.

Why hadn't my gastroenterologist known about it?

Anyway, I quit the EPD shots. The dr. treating me for this was a naturopatic

dr and said he didn't want to treat me anymore because I didn't want to get

well. Turns out my EPD dr. and the gastro dr. went to school together and

knew each other. Makes me wonder.

Dianne

[Guest guest]

This does not explain those that didn't deploy to the Gulf that have

GWI/GWS. In their wisdom of " finding fault " for " psychological problems " ,

is the report going to say about them? I Agree, complete BS.

For those of us who had hoped inclusion of

the IOM would provide a objective and honest

assessment of Gulf War Illnesses, we now

know that is not to happen.

Digest Number 726

[Guest guest]

Phyllis

SSSSHHHH! She might figure out this could be some extra money for her and

charge us. LOL! Just kidding.

I know it would be worth paying for the education though!

Your friend in NC,

Carla

>

> Hey : We should all make appointments with Mistress f Maybelline for

> the Holiday Party. Phyllis

>

>

>

[Guest guest]

Carla, GREAT IDEA!!!!! Only kidding! Could it be that God put me on this

earth to do makeup?! LOL

Re: Digest Number 726

Phyllis

SSSSHHHH! She might figure out this could be some extra money for her

and

charge us. LOL! Just kidding.

I know it would be worth paying for the education though!

Your friend in NC,

Carla

>

> Hey : We should all make appointments with Mistress f Maybelline for

> the Holiday Party. Phyllis

>

>

>

[Guest guest]

Hi,

We got all services for my daughter paid by school district. They have

money and they can pay it , but will fight you every way they can. Maya

had her OT paid, diagnostic evaluations, private speech therapy, because

we were not happy with amount of time and quality of speech therapist at

school. Even though I am home schooling now, they are still paying for

her private speech therapy. But, be ready to fight, get copy of special

ed rights, get it from PACE, in Oakland, it got California and federal

laws. We did IEP's ourselves, but you can hire advocates , too. Good

luck and do not let school district intimidate you, law is on our side.

Jasmina N.

[Guest guest]

Hi Judy, have you applied for a medicaid waiver from your dept. of human

services yet? Sometimes theres a waiting list my daughter is on it ,but i

heard its worth it once they get it .It helps pay for therapies an in home

modifacations. Another thing you should be intitled too more after you get

the final dx.My daughter turned three in july,and she was just dx in may of

2001. She was in ei, but now in special ed pre-school four days a week,and

private speech an o.t. twice a week ,but once she gets the waiver i'am

hopefully adding a couple of days to that.There is hope noelle went from 10

words in jan to now over 100.She did have a lot of echolalia,but now its

mostly with intent. good-luck an remember a dx of autism is'nt the end of the

world feel free to e-mail me privately if you'd like dannilynn700231@...

[Guest guest]

Hi Dannilynn, I just realized that you and paul were talking to me.

The subject was weird though. Thanks for the input. I didn't

realize that I could get more coverage and help from the state. I am

really worried about when gets into the school system. She

was diagnosed on tuesday with mild autism and the recommendation was

for 20 hrs a week of intense therapy. Nothing specific but more one

on one speech and OT. Your daughter sounds like she is doing Great!!

I have alot of hope for the future and I know that with this early

intervention everything is going to be fine... or at least okay. I

really wonder how I can keep up with all this time in therapy. It

seems that I am never really home now. What is the medicaid waiver

based on? income, condition, or insurance coverage?

Thanks for all the help and insight.

I appreciate it and if you have any toilet training tips I will listen

Thanks Again

Judy

> Hi Judy, have you applied for a medicaid waiver from your dept. of

human

> services yet? Sometimes theres a waiting list my daughter is on

it ,but i

> heard its worth it once they get it .It helps pay for therapies an

in home

> modifacations. Another thing you should be intitled too more after

you get

> the final dx.My daughter turned three in july,and she was just dx

in may of

> 2001. She was in ei, but now in special ed pre-school four days a

week,and

> private speech an o.t. twice a week ,but once she gets the waiver

i'am

> hopefully adding a couple of days to that.There is hope noelle went

from 10

> words in jan to now over 100.She did have a lot of echolalia,but

now its

> mostly with intent. good-luck an remember a dx of autism is'nt the

end of the

> world feel free to e-mail me privately if you'd like

dannilynn700231@a...

[Guest guest]

Thanks for the info. I just came from a support group meeting and

realized that I am probably in for the fight of my life trying to get

money and someone who is qualified to treat my child. I heard

wonderful stories of lack of teachers and not following the IEP. ?

I will get ahold of PACE and get that info.

Thanks Again

Judy

> Hi,

> We got all services for my daughter paid by school district. They

have

> money and they can pay it , but will fight you every way they can.

Maya

> had her OT paid, diagnostic evaluations, private speech therapy,

because

> we were not happy with amount of time and quality of speech

therapist at

> school. Even though I am home schooling now, they are still paying

for

> her private speech therapy. But, be ready to fight, get copy of

special

> ed rights, get it from PACE, in Oakland, it got California and

federal

> laws. We did IEP's ourselves, but you can hire advocates , too.

Good

> luck and do not let school district intimidate you, law is on our

side.

> Jasmina N.

[Guest guest]

Hi all,

I pray that everything is well and as much pain free as possible, with all

and everybody here.

I got some news that may be good.

Dr Silas has called, (she is very good at calling when she does not hear

from us for a week or so) and she wants Kim in Salt Lake ASAP, that means we

are leaving here tomorrow. She is talking about admitting him to the

hospital and really checking him over to see how they can help him. He has

severe GI problems and she wants it fixed. He is still in a lot of pain and

can not sleep much, just lay in bed, fatigue and weak. I believe it hurts me

almost as much as it does him to see him this way. Two years ago he was

Blacksmithing and going to the Rendezvous all over this region, now he can't

even go to town to do some shopping. Please help me pray that they can help

him fix this GI problem so that we can get started on all the joint

replacements he needs(Both shoulders, both knees and a hip). We are looking

at a 2 year recovery, but anything is better then what he is going through

now.

Every time I read on here that someone is in remission, it gives me a new

up-ward wind and hope that maybe some day (soon?) he will be able to

function again. If it is not the way it was, so be it, but I pray that he

will get at least to a point where he can do things on his own again. He has

been on pred. and methotraxate since April and his appetite is somewhat

better, but he still looses weight. Hopefully he has not another ulcer, he

can not afford loosing any more of his stomage.

So him going to the hospital and staying is a big ray of hope I am hanging

on too.

So as soon as I get back from the BIG city I will let you all know what is

going on.

You all are in my prayers and thank you for being here and giving me hope

and strength to go on.

Jenaka

Humankind has not woven the web of life.

We are but one thread within it.

Whatever we do to the web, we do to ourselves.

All things are bound together.

All things connect.

... Chief Seattle

[Guest guest]

Jenaka,

Sure hope all goes well with Kim at the hospital and they get something

solved with his stomach problems! I think we may live fairly close to

you, we are on the Utah Colorado border, near Flaming Gorge. We will

have to set up a meeting time perhaps in SLC as I go there often. It

will be nice to meet you folks.

You sound very supportive and yes sometimes it is as hard on the partner

when your spouse is ill, especially when it is a long term situation.

We will be praying for you both, Louise.

[Guest guest]

Jenaka,

What hospital will Kim be in? I'm in the area so please give me a call

when you get to the 'big city'. Barb at 568-9041

[Guest guest]

Jenaka,

What hospital will Kim be in? I'm in the area so please give me a call

when you get to the 'big city'. Barb at 568-9041

[Guest guest]

Dear Jenaka,

Your family will be in my prayers. That is wonderful news. I am sure in

time that he will get better. I believe the onset and the beginning years

of the disease are often the worst. He is lucky to have you.

jatw@...

[Guest guest]

Dear Jenaka,

Your family will be in my prayers. That is wonderful news. I am sure in

time that he will get better. I believe the onset and the beginning years

of the disease are often the worst. He is lucky to have you.

jatw@...

[Guest guest]

Hello all. Re: Australian Nick, my ear (last operated on in December) does

something very similar, except not particularly linked to morning. It can happen

at any time, & often does - my hearing in that ear is never great but it will

fade & get even worse. I " pop " my ears (hold my nose & blow) a lot & that clears

it, brings it back to my normal hearing level. My otologist says ear popping is

fine for me to do (but not right after surgery).

Re: e-mail - don't forget, you can set your group member options to receive the

Digest if you still want to see the posts but don't want every single post

showing up as a separate -mail. I'm on the digest & I get one e-mail approx.

daily with all of the recent posts in it.

As for aching, I'm 7 months post-op & still have days where that ear will ache a

bit. Nothing an over-the-counter pain reliever won't help, but aching

nonetheless. I still get the occasional stabbing pain, too (y'all might know the

one I mean!). I just put it down to the extended healing process.

[Guest guest]

Thanks for letting me know about the list

Penguin

On Aug 22, 2004, at 12:46 PM, Liz Lai wrote:

> Hi Penguin!

>

> I'm glad you joined this group!  This group will help you pass the

> next PTCE!  I'm happy to see you here!

>

> -Liz

[Guest guest]

cweeks@... wrote:

Hi everyone! I've been reading about lethicin, which is made from

soyeans, as

a good way to get rid of sludge in the arteries. Since soy is getting

such a

bad rap lately, does anyone have any oppinions as to whether it could

do harm

as well as good?

=============================

The best, most permanent way to get rid of sludge in the arteries is to

cleanse and change the diet. Start drinking lots of distilled water

with fresh squeezed lemon in it. Eat lots of fresh green leafy veggies

and raw fruits. Sprouted seeds and nuts. Lecithin is very much needed

and used in the body for fat/oil digestion. Of course, one needs to

stay away from saturated fats as these are the ones that clog up the

arteries as they become solid in the body. Mono-unsaturated fats remain

liquid in the body as do poly-unsaturated fats. Here are other sources

of lecithin besides soybeans. Of interest, lecithin from plant material

is better utilized than that from animal parts or products. Source:

http://www.newspirit.com/literature/techbulletins_lecithin.asp

"Researchers

and have also shown that lecithin from a vegetable source

(soybeans) is more effective than lecithin from an animal source (eggs)

in acceleratingly re-absorption of cholesterol back into the blood

stream that has adhered to the walls of blood vessels and caused

blockage.

This difference is attributed to the fact that lecithin from animal

sources contains high amounts of saturated fatty acids, while lecithin

from vegetable sources are about 80% unsaturated fatty acids."

Good sources of lecithin include cabbage, cauliflower, chickpeas, green

beans, lentils, soybeans, corn, split peas, calves' liver, and eggs.

-- Peace, love and light,

Don "Quai" Eitner

"Spirit sleeps in the mineral, breathes in the vegetable, dreams in the animal and wakes in man."

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[Guest guest]

anxiety can also come from thyroid imbalance, either hypo or hyper. You

should do all the hormonal balance programs in nutrition, biofeedback and

timed therapies. What are your Adrenal readings in VARHOPE? That will give

you a clue as well, if they are low, your adrenals will start to rely on the

thyroid gland to step in which will create that imbalance. Organic Sea Salt

is key in helping both. Email me off list if you need more help.

www.advancedbiofeedback.com for your health needs

www.orenda.iact1.com/11239 for anti aging, immune modulation & easy weight

loss

http://soldiersangels.org Let no soldier go unloved

May no soldier walk alone

May no soldier be forgotten

Until they all come home

[Guest guest]

I need to get a DVD work out