Update

[Guest guest]

Also, forgot to mention........Esther and Ron are in same hospital so

I am running up and down LOL............not good exercising though......am

using elevator LOL

~ Carol ~

----- Original Message -----

From: Esther & Carol <cheerios@...>

< egroups>

Sent: Saturday, June 03, 2000 10:28 AM

Subject: [ ] Update

> Thought I would report in about my husband, Ron. He was transferred

> yesterday from our local hospital to for heart catheterization.

> (our local hospital is not equipped to do this) During the procedure

> they discovered that the Left Anterior Descending Coronary Artery

> was 99% clogged. He had Angioplasty (the balloon procedure)

> done and they also inserted

> a stent (wire mesh) to keep the artery open. This is his second

> Angioplasty but not on same artery. Doctor told us that he has

> serious Coronary Artery Disease

>

> In the mean time, Esther's psych suggested that he admit Esther

> back to the mental health floor for continued help on her eating

> disorder so that I would not have to deal with the stress of having

> to cath her and so that she would not be forced to sit up all day.

> Whew! Must be a run-in sentence LOL.

> She is only going to be there a few days. Ron will be discharged

> probably on Monday.

>

> Sorry about not keeping up with the list or responding to any of you.

> , I hope you are relaxing and healing today!

>

> Thank you all for your prayers

> Have a great weekend!

>

> ~ Carol ~

>

>

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

> Get 2 FREE books at eHarlequin.com.Indulge in our romantic books,

> recipes and getaway ideas. Take your romantic escape today to

> 1/4778/6/_/478567/_/960042470/

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

>

> URL to change your membership options:

/group/

> RA-support website: http://www.rasupport.webprovider.com/

> Our chat room: www.delphi.com/RheumatoidArth1/start

[Guest guest]

Carol,

I will be thinking of you and your family!!! Tell Esther hello and remember to

take care of

yourself too!!!

Hugs,

Trish

--- Esther & Carol <cheerios@...> wrote:

> Also, forgot to mention........Esther and Ron are in same hospital so

> I am running up and down LOL............not good exercising though......am

> using elevator LOL

>

> ~ Carol ~

>

>

> ----- Original Message -----

> From: Esther & Carol <cheerios@...>

> < egroups>

> Sent: Saturday, June 03, 2000 10:28 AM

> Subject: [ ] Update

>

>

> > Thought I would report in about my husband, Ron. He was transferred

> > yesterday from our local hospital to for heart catheterization.

> > (our local hospital is not equipped to do this) During the procedure

> > they discovered that the Left Anterior Descending Coronary Artery

> > was 99% clogged. He had Angioplasty (the balloon procedure)

> > done and they also inserted

> > a stent (wire mesh) to keep the artery open. This is his second

> > Angioplasty but not on same artery. Doctor told us that he has

> > serious Coronary Artery Disease

> >

> > In the mean time, Esther's psych suggested that he admit Esther

> > back to the mental health floor for continued help on her eating

> > disorder so that I would not have to deal with the stress of having

> > to cath her and so that she would not be forced to sit up all day.

> > Whew! Must be a run-in sentence LOL.

> > She is only going to be there a few days. Ron will be discharged

> > probably on Monday.

> >

> > Sorry about not keeping up with the list or responding to any of you.

> > , I hope you are relaxing and healing today!

> >

> > Thank you all for your prayers

> > Have a great weekend!

> >

> > ~ Carol ~

> >

> >

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

> > Get 2 FREE books at eHarlequin.com.Indulge in our romantic books,

> > recipes and getaway ideas. Take your romantic escape today to

> > 1/4778/6/_/478567/_/960042470/

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

> >

> > URL to change your membership options:

> /group/

> > RA-support website: http://www.rasupport.webprovider.com/

> > Our chat room: www.delphi.com/RheumatoidArth1/start

>

>

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

> Looking for SUPPORT on lowering Long Distance bills? Join beMANY!

> Our huge buying group gives you Long Distance rates which fall

> monthly, plus an extra $60 in FREE calls!

> 1/4830/6/_/478567/_/960042727/

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

>

> URL to change your membership options: /group/

> RA-support website: http://www.rasupport.webprovider.com/

> Our chat room: www.delphi.com/RheumatoidArth1/start

>

__________________________________________________

[Guest guest]

Carol,

I'm sorry that Esther and Ron had to be hospitalized. I wish they could do

something with Esther's bladder. It seems like it started the eating

disorder all over again. I hope she hasn't given up hope that it will come

back. Have you heard about the stroke patients reeducating the affected

limb to almost 100%. It is pretty amazing what the body can do, and I hope

one day soon her bladder will wake up.

I'm sorry that Ron's heart is in such bad shape. Is a transplant possible?

a

----- Original Message -----

From: Esther & Carol <cheerios@...>

< egroups>

Sent: Saturday, June 03, 2000 10:28 AM

Subject: [ ] Update

> Thought I would report in about my husband, Ron. He was transferred

> yesterday from our local hospital to for heart catheterization.

> (our local hospital is not equipped to do this) During the procedure

> they discovered that the Left Anterior Descending Coronary Artery

> was 99% clogged. He had Angioplasty (the balloon procedure)

> done and they also inserted

> a stent (wire mesh) to keep the artery open. This is his second

> Angioplasty but not on same artery. Doctor told us that he has

> serious Coronary Artery Disease

>

> In the mean time, Esther's psych suggested that he admit Esther

> back to the mental health floor for continued help on her eating

> disorder so that I would not have to deal with the stress of having

> to cath her and so that she would not be forced to sit up all day.

> Whew! Must be a run-in sentence LOL.

> She is only going to be there a few days. Ron will be discharged

> probably on Monday.

>

> Sorry about not keeping up with the list or responding to any of you.

> , I hope you are relaxing and healing today!

>

> Thank you all for your prayers

> Have a great weekend!

>

> ~ Carol ~

>

>

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

> Get 2 FREE books at eHarlequin.com.Indulge in our romantic books,

> recipes and getaway ideas. Take your romantic escape today to

> 1/4778/6/_/478567/_/960042470/

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

>

> URL to change your membership options:

/group/

> RA-support website: http://www.rasupport.webprovider.com/

> Our chat room: www.delphi.com/RheumatoidArth1/start

>

[Guest guest]

Carol,

I am doing pretty good. Not much bleeding. Only needed stitches on the front

4. They pulled 7 total but no stitches in the other 3. Just a little swollen

in the front. Still taking pain meds. I only ache like a toothache not the

pain the day had the surgery.

I am just checking my mail and will post more when i don't feel so high.lol

take care and hope Ron is home with you soon,

[Guest guest]

Hi Esther and Carol,

Esther, I'm so sorry you are having so many problems with your wrist. I

hope things improve. I will tell you what was told to me about WC. Do not

be led into any false security, they are not your friends. They will act

very friendly as mine did, but they are anything but your friend. They try

to make you think they have your best interest at heart, they don't. In

the beginning I was also told I could go to my own doctor and of course I

did. All the nonsense started later. The biggest mistake WC made with me

was that the first case worker I had did not make me go to their doctor. I

believe he lost his job. I at that point had the upper hand. Please read

what a sent a few days ago. It is all very true, not one false

statement in it. I am afraid you feel they are your friend and may be

offering them too much information. I made that mistake, I am too

trusting. Something I have learned not to be anymore. Please just be

careful with them and always remember they are not your friend. I hope it

is okay, but I feel I need to let you know. Trust me things can get very

bad. You don't need a lawyer yet, but trust you may need to start thinking

about it. I didn't think I would and did I ever. I don't mean to upset

you or cause any stress, just some advise from someone who has lived the

nightmare for five years.

Hope you are feeling better.

In search of articles for you I found this that I thought you could relate

to:

Your employer may force you to see " their " doctor. Remember, this doctor is

NOT your friend. Provide no more information than absolutely necessary.

Answer questions with " yes " or " no " -- period. You do not have to prove

anything to this doctor. S/He may insult you, say you are okay, accuse you

of faking your injury. Pay no attention -- the insurance company's doctors

are hired to say these things.

You May Be Followed!

Yes, your employer may hire a private investigator hired who follows you

and

tries to obtain photos showing you performing activities a person with your

injury shouldn't be able to do.

This is more common than you might think. " Big Brother " is indeed watching.

One reader told us that the investigators put boulders in front of his

garage door every night so he had to move them to get his car out of the

garage, thereby engaging in an activity he shouldn't have been able to

perform.

----------

> From: Esther & Carol <cheerios@...>

> egroups

> Subject: [ ] Update

> Date: Thursday, August 24, 2000 12:38 AM

>

> Hi all,

> Thought I would update on what's happening with me. I am still

> experiencing

> pain in my wrist and ankle........from the accident at work. My job

started

> me

> on Workman's Compensation. WC has been really nice to me, believe it or

> not, . They say that I am so complicated that they want me to go to

my

> OWN doctors. That is easier LOL.......hard to go through everything with

a

> new

> dr. Went again today and saw a hand specialist that I have had several

> times

> before. He wants me to stay off work another four weeks. I have torn

> ligaments,

> contusions and sprain of it. He wants me to wear a special hand splint

all

> the

> time. I already had two hand splints.........I always wear handsplints

to

> bed

> (by wearing splints it helps the fingers from not deforming......been

> wearing

> them since a child)

>

> Guess what else happened? Monday morning I woke up and couldn't

> straighten my left leg. It really hurts and I cannot help with a stand

> pivot from

> my wheelchair. Had an appointment with the ortho on Friday but he moved

> the appointment up for today. He took an x-ray and my left

knee-replacement

> is more loose than it was before. I already have an appointment for next

> Tuesday to have a bone scan done on it. He said some how I torn a

ligament

> behind the knee and the muscles behind it are very knotted. Have no idea

> how this happened because Sunday night when I went to bed, it was fine.

> Mom says I must have had a really rough night LOL. He is ordering a

special

> brace and will be going to do surgery to remove the prothesis. We have

> 3 weeks to get the knee out straight or he will manipulate

> it......ouch.....had that

> done before. My home therapist, Mike came today and is killing me. Mom

> has to learn how to do it too.

>

> Monday we started training yet another home health aide. She is young

and

> use to work in a group home so we are crossing our fingers that will

> work out. However, she called off today. I did like her the two days

she

> did

> work.

>

> Hope everyone is feeling okay. Warm welcome to all " Newbies "

>

> ~ Esther ~ JRA since age 8.......RA, Fibro, Mild CP, Osteo ...... 23

years

> ~ Carol, Mom my typist and caregiver ~

>

> I didn't inform work about the knee surgery because they said it would be

> awhile before they actually do it. Was afraid to tell them about that!

>

>

>

>

> Our websites: http://rheumatoid.arthritis.freehosting.net/

> http://www.rasupport.webprovider.com/

> Our chat room: www.delphi.com/RheumatoidArth1/start

[Guest guest]

April:

Good looking Dr. & smart????????? Gee, where's this guy at?? hehe.

It's so nice to run into people who actually are educated and know

what these bands/helmets are for. Sorry to here Bri had a fit with

her shots! But glad to here the ped. is happy with her progress thus

far.

Debbie Abby's mom : )

> Hello all,

>

> I had my day made on Thursday. I went to a Dr. apt for my wrist

> (carple tunnel, joint problem & a cyst thrown in for fun) anyhoos

when

> I walked in the dr asked me who made Bri's remolding helmet. Well

he

> caught me so off guard that I had to ask huh (sounding just as

> intelligent as it does here) he said isn't that what it's for to

round

> out her head? Well I was so ecstatic that I practically forgot

about

> my needs and just wanted to know how he knew. Well it turns out he

> did his training out west somewhere and he said that they saw 4 or

5

> cases a week. He had great things to say about the helmets and how

> they did a great job. So I really like this guy not only is he

VERY

> good looking but he is intelligent too (don't tell hubby LOL).

>

> Bri went for her 9 mth. check up yesterday and had her shots and

lead

> test. She has never reacted for so long and so hysterically. I

felt

> sooooooo bad. Dr. Man said that her brain is growing right on

> schedule and that that is a great sign. He saw alot of improvement

> also. Esp in her Tort. (which i thought was coming back) she is

now

> 18lbs and 27 inches tall.

>

> Guess that's all for now. Were off to hubby's first softball game

> of the season. Have a great weekend everyone.

>

> April

> Mommy to Bri and Mandy

[Guest guest]

April,

Thanks for the update. Wow, it is great that you found a knowledgable dr -

could that mean that there is hope for the medical field!!?? :-)

Good to hear about the progress and here's hoping for a good growth spurt

very soon!!

Marci (Mom to )

Oklahoma

[Guest guest]

Hi Alisha,

I have two " twenty something " old daughters. My oldest has struggled

with CMT for several years, the other appears to be simply a DNA

carrier. My eldest has struggled with much of what you are now dealing

with. Use your parents and friend to draw strength and encouragement

from. I'm sure they all love you, and they can actually help you over

the bad times if you simply let them. It sounds silly, maybe to

simple, but try it, what do you have to loose

Keep trying, you surely are an inspiration to others who see you

struggling, and yet overcoming your obstacles.. I won't tell you it

gets easier, but you will get stronger emotionally, and if you will

allow others to help you, not to the point of dependency, just enough

to give you the strength they want so desperately to give you, you'll

find the burden appears to get lighter.

God Bless,

Dave C.

> hi everyone, alisha here,

>

> well i thought that i'd let u guys know what's going on, i have been

really

> busy and on the flip side really depressed. i just got my flu shot and

> picked up a prescription for paxil.

>

> on the 16th i have my first appointment at the pain clinic!!

>

> i was supposed to be on a waiting list for a test for my memory since i

> can't remember anything, they wanted to test me out to c if they could

> figure it out why. well i wasn't even put on the waiting list so i

have been

> waiting almost 2 years for this test. finally my psychologist is

doing the

> test, on monday which is tomorrow i will finish the last day.

>

> for those that don't know me, im alisha, im 18 and have CMTX. i was

> diagnosed when i was 13 years old by DNA, EMG/NCV and a strong family

> history. i use a walker for mobility only, i can walk without it

infact i do

> all the time at home and when i go out, i only use my walker at school.

> since i am still in school for the past 2 years i have had a reduced

time

> table so that i am only at school for a half day so that i don't

feel as

> tired and i can go home and rest!!

>

> well my boyfriend and i broke up a couple of weeks ago...... im fine

with it

> at the moment, i have been at the docs several times, and i have

been put on

> more waiting lists so im going on with my life and infact someone

else asked

> me out so we're working on the day for the date!!

>

> well off to bed now,

> chow for now

>

> alisha

>

>

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at

http://explorer.msn.com/intl.asp

[Guest guest]

In a message dated 11/4/2001 7:41:01 PM Pacific Standard Time,

fivertherabbit@... writes:

> well my boyfriend and i broke up a couple of weeks ago......

So fill is in Alisha, what happened?

jenny

[Guest guest]

Alisha,

I am glad to hear that you are moving on and setting a date with someone new

rather than dwell on the someone old. That is hard to do and at your age,

even harder. Keep that positive attitude and you will be fine. I wish you all

the best with health and happiness.

[Guest guest]

well, he probably doesn't deserve you anyway! Wait until you find someone who

will trully care about you as a person without worrying about the " other "

issues.

martha

Mommy2Adam@... wrote: In a message dated 11/4/2001 7:41:01 PM Pacific

Standard Time,

fivertherabbit@... writes:

> well my boyfriend and i broke up a couple of weeks ago......

So fill is in Alisha, what happened?

jenny

[Guest guest]

Hooray for Alisha!

You sound so up beat and good. Take care of your

self, ya here?

Regards,

Susie

[Guest guest]

Patty, dear I am the eczema queen! Remember Tyler my son never had athletes foot, as I wa told by 4 docs! It was a chronic case of eczema by that time! It is on his hands and feet. The essential fatty acid thing helps a lot! He take a teasppon of fish oil or flax seed oil every day, and also make sure to lubricate your skin with plently of mineral oil, or Aveeno (oh my god wroks wonders!) after bathing. Don’t dry completely off, as the mineral oil will seal in the moisture. Keep the area out of the sun for long periods of time. Also an aspirin will help the inflamation at night. Ezcema is usually known to be from an allergic reaction to enviromental issues (like soaps, cleaners, cats) and also triggered by food sensitivities. It wasn’t until I changed Tyler eating Dairy to none now, added the essential oils, clean with only shaklee products (organic) and also lubricate, lubricate, lubricate has it almost went into remission. They gave me a elidel prescription, throw it away. They still do not know long term effects (some are saying cancer is possibitly) as these medication change your immune responses in the skin. Meaning, they literally stop your skin to reacting. Well Dr Mercola says its no good, seeing that is also stops your skin from reacting to fungas, infection, and skin cancers. It literally makes it open field. Hope the info helps, feel free! I have been battling this crap for Tyler for some time now. PS if you need anything, use a little over the counter hydrocortisone 1% once a day! nna

----- OrWiginal Message -----

From: *~Patty~*

Sent: Monday, July 21, 2003 4:55 PM

Subject: update

I just got back from the doctor and his verdict is that my bee sting is healed, but I have eczema there now. That is why it looks so inflammed and is so itchy. I've never had eczema in my life before. Hmmm. Wonder why now? And that exact spot?

So, at any rate, he gave me a prescription cream for it and I am doing more research on alternative therapies, of which there are MANY. I find it quite interesting that a defiency of EPO, or essential fatty acids can be a culprit, and so it is recommended to up the intake of EPO and fish oils quite a bit--I find that interesting because I quit taking my EPO about 4 or 5 months ago...I just got tired of taking pills and didn't quite get back on the bandwagon! Looks like I need to now. Higher doses of zinc are also recommended.

Well, anyway, I am not too happy about an eczema diagnosis, as it seems that some people have a chronic problem with it. Hopefully this will not be my initiation into that new arena of misery!

Thanks for the prompting to go to the doc, Honee and . You know me, I'd probably just be thinking I can take care of it still and hoping it would go away....

Patty

[Guest guest]

,

Well you and I are destined to share alot of healing experiences, aren't we?!! Thank you so much for the eczema info and treatments. I'll make note of everything and get this ball rolling, because I don't want to deal with this forever. I think you'll be proud of me...I did not fill the prescription he gave me for fluocinonide. I have a habit of checking out all prescriptions on the net or in books before I buy them to decide if I really want to take them or not. Almost invariably I choose not to take them, but rather seek natural remedies, and this was no exception. It is just a stronger topical steriod, and I decided I already had the hydrocortisone at home, so why bother? And definitely, as you pointed out, there are plenty of options with alternative treatments.

I'll have to look for that Aveeno--thanks for the tip! I am also going to look into the Shaklee stuff. Someone else recently mentioned how much they like Shaklee.

I wondered about the food allergies, too, especially with my recent bout of brain fog. I felt like I had a clogged or sluggish liver for some reason. It makes sense that I could have some kind of allergy that I am not aware of, maybe a new one, darn!

Thanks again ! This group is so great....you guys are the best! I love how much we can help each other!

Patty

----- Original Message -----

From: JOSEPH PALANCA

Sent: Monday, July 21, 2003 10:31 PM

Subject: Re: update

Patty, dear I am the eczema queen! Remember Tyler my son never had athletes foot, as I wa told by 4 docs! It was a chronic case of eczema by that time! It is on his hands and feet. The essential fatty acid thing helps a lot! He take a teasppon of fish oil or flax seed oil every day, and also make sure to lubricate your skin with plently of mineral oil, or Aveeno (oh my god wroks wonders!) after bathing. Don’t dry completely off, as the mineral oil will seal in the moisture. Keep the area out of the sun for long periods of time. Also an aspirin will help the inflamation at night. Ezcema is usually known to be from an allergic reaction to enviromental issues (like soaps, cleaners, cats) and also triggered by food sensitivities. It wasn’t until I changed Tyler eating Dairy to none now, added the essential oils, clean with only shaklee products (organic) and also lubricate, lubricate, lubricate has it almost went into remission. They gave me a elidel prescription, throw it away. They still do not know long term effects (some are saying cancer is possibitly) as these medication change your immune responses in the skin. Meaning, they literally stop your skin to reacting. Well Dr Mercola says its no good, seeing that is also stops your skin from reacting to fungas, infection, and skin cancers. It literally makes it open field. Hope the info helps, feel free! I have been battling this crap for Tyler for some time now. PS if you need anything, use a little over the counter hydrocortisone 1% once a day! nna

[Guest guest]

thanks frank

i just odered gcg, i've never tried it before so it's worth a shot

for intestinal cleansing i know what i'm doing already

i take bitter herbs from a chinese herbalist which helps somewhat as a tonic and

strengthener

i find the gallstones are the hardest to get out, maybe because there is no bile

in the gallbladder. who knows

maybe i'll go back to the apple juice and see if that helps. all i know is that

i had no problems getting stones out for over two years and now that i'm

starting to feel healthy it seems more difficult. i also started to saunas and

this has helped my health out alot, however this might be contributing somehow

to not getting stones out during flushes.

[Guest guest]

You may consider a regimen found on www.sensiblehealth.com.

Chang's credentials far outweigh most on this newsgroup.

Too much trial and error here, it's the error that I can't afford.

The steps are:

1) crush and soften stones (Gold Coin Grass)

2) Intestinal Cleanse (Bentonite + Psyllium Husk)

3) Gallbladder/Liver Flush (Olive Oil etc.)

It's my first day on GCG.

www.liverdoctor.com Dr. Cabot has a lot of info on the liver and it's

relationship to weight.

----- Original Message -----

From: luckower

gallstones

Sent: Saturday, December 13, 2003 1:11 PM

Subject: update

hey

haven't been on in a while

here's my update maybe someone can help

i'm finding that getting stuff out is alot harder now that things are

mostly cleared out. i still feel things stuck in my liver/gb but it's

not nearly as bad as it used to be.

i can basically eat anything

alot of my old tricks for flushing aren't working anymore. it used to

be that every few days i would flush and alot of junk would come out.

now i can go a week or two, and still very little comes out.

also my pizza trick doesnt work either. i used to eat alot of pizza

the day of the flush to force everything to contract. in the past it

worked great but now i don t even get a reaction.

the worst thing now is that i have swollen joints in my hips. this

all started after i began flushes. also i put on a ton of weight

during the past few years with all the flushing. i think what

happened is that everything got blocked by larger stones and then the

waste had to be stored in other places in my body like joints, lymph,

etc.

in general i feel healthier which is good, but i need to have more

successful flushes, and my chemistry is totally different than it

was. i would alos love to lose weight, but i dont know if i can do

this until my liver/gb is completely cleared out.

any advice appreciated

thx

[Guest guest]

> i'm finding that getting stuff out is alot harder now that things are

> mostly cleared out. i still feel things stuck in my liver/gb but it's

> not nearly as bad as it used to be.

>

> i can basically eat anything

>

> alot of my old tricks for flushing aren't working anymore. it used to

> be that every few days i would flush and alot of junk would come out.

> now i can go a week or two, and still very little comes out.

> the worst thing now is that i have swollen joints in my hips. this

> all started after i began flushes. also i put on a ton of weight

> during the past few years with all the flushing. i think what

> happened is that everything got blocked by larger stones and then the

> waste had to be stored in other places in my body like joints, lymph,

> etc.

Hi luckower? (not sure of your name),

One thing that concerns me when I hear of repeated flushing

over and over is the whether or not people are building as well

as cleansing. Are you eating a nutritiotious diet and taking

vitamin and mineral supplements to make up for what will

definately be missing in your diet? Your symptoms sound like

you are not. Also, flushing should not put on weight, but

take it off, I should think...in my case it seems to help my

body regulate weight better. So I think you have some concerns

here that go beyond anything to do with a liver of gallbladder

that needs cleansing. I can't be sure what they are since I can't

do a nutritional analysis on you here, but would look in a

different direction if I were you...perhaps meet with a good

Nutritionist.

L. Meydrech, CN

http://nutritionist.tripod.com/gallbladder.html ~ My Flushes

HerBulletin

FREE Health Analysis:

http://www.mynsp.com/web/meydrech/healthAnalyzer.jsp

mailto:claudiameydrech@...

" A cheerful heart is good medicine " Prov. 17:22a

[Guest guest]

--- In , " keemaka42 " <keemaka42@y...>

wrote:

> I have been very busy and wanted to report...I am doing well and am

> sitting at a 20 YEAR LOW prednisone dose of 10 mg a day!! My docs

all

> think the Xolair reps oughta pay for my drug and take me on the road

> as a poster child<vbg>.

>

> I am slowly weaning off the IVIG therapy, but it will take several

> months to do that because there are no guidelines for doing so, but

> the Xolair seems to be holding through that decrease. I will be

parked

> at this pred dose for many months while my system tries to

> recalibrate, but I truly don't mind. Two years ago no one thought I

> would survive to see my 50th birthday (which was in December) much

> less regain almost normal lung volumes on my PFTs. For me, the drug

> has been a miracle.

>

> I will admit to rolling my eyes a bit in jealousy when I read about

> some of the peak flow numbers; I remind myself that in asthma what

> counts is the *change* not the absolute value, but golly, I could

get

> two GOOD readings out of some of your numbers...wonder if I could

fool

> the doc???

>

> I heard the Humana HMOs are charging $350 co-pays per month and that

> prices are varying widely from region to region. My allergist says

> that in part it is because some doctors buy the drug and then charge

> the patient, others have the patient buy the drug and bring it in

and

> bill for the nurse time to mix it (which is considerable for large

> doses)...the reimbursement for these various methods are all

> different. Supposedly eventually the insurance companies will

decide

> how to handle/bill it and that all important CODE will be assigned.

> There will be more and more of these type drugs coming on the market

> in the future.

>

> Anyway...best wishes to all

>

> P

Thanks for the update! Glad to hear you are doing much better on the

Xolair too

Doug

[Guest guest]

> Two questions:

> 1. I am currently taking 3.0 of LDN and remember reading that for

MS Dr.

> Bihari recommends 4.5 What is the opinion of the group? How

important is

> it? I also read that it's an individual thing and you need to

find the time

> (10 pm) and dose that works best for you.

When I spoke to Dr. B he was very clear that 4.5 was the target

dose. That was in March. He also felt that beng on LDN was critical,

so finding a tolerable dose would be better than not taking it. My

stiffness has continued to diminish (most days) after 60 - 70 days

out. I started on, and remain on 4.5. My wife takes 4.5 as a cancer

preventatve (she had Melanoma) and never experienced the insomnia or

stiffness that I did.

We take ours at 9:30 most nghts and that seems to fit my sleep

habits.

Until there is better info I personally feel following Dr. B's

instructions as best as possible is a wise course.

Best

Alan

[Guest guest]

I can't download either, and really want to read what you have to

say. Can you copy and paste here???

Cinders

>

[Guest guest]

Somehow the beagle virus got into that attachment and this was not found by my norton antivirus. Be careful guys.

Reg.

-------Original Message-------

From: low dose naltrexone

Date: 07/21/04 08:06:07

Lowdosenaltrexone

Subject: [low dose naltrexone] Update

More info is in attach

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

Hello Friday and all,

I have been on LDN for 6 months and I had immediate great results for quite a while and then I unfortunately relapsed one month ago. I had steroids and I still haven't recovered, I am dragging my left leg around. I missed one dose of LDN during steroid treatment and haven't missed one since. I became slightly disillusioned with it at the time but I will not stop taking it and hope that it will kick in again like last time.The dose is 3mg and the filler is magnesium. After the relapse and after the missed dose it was like I was taking it for the first time. I had the sleepless nights and stiffness which I didn't have before.

The insomnia was driving me crazy and it still is. I feel a bit delirious but at least I can stay awake to watch the Olympics during the night, one positive that's come out of it. So, back to square one for me but I won't give up hope, I will keep you informed of any progress.

Effie - Melbourne Australia

[Guest guest]

Remaining positive will pay off ten fold. Pateince is the one trait us MS'ers excell in. Thank goodness.

----- Original Message -----

From: Effie Demas

low dose naltrexone

Sent: Wednesday, August 18, 2004 9:40 AM

Subject: RE: [low dose naltrexone] Update

Hello Friday and all,

I have been on LDN for 6 months and I had immediate great results for quite a while and then I unfortunately relapsed one month ago. I had steroids and I still haven't recovered, I am dragging my left leg around. I missed one dose of LDN during steroid treatment and haven't missed one since. I became slightly disillusioned with it at the time but I will not stop taking it and hope that it will kick in again like last time.The dose is 3mg and the filler is magnesium. After the relapse and after the missed dose it was like I was taking it for the first time. I had the sleepless nights and stiffness which I didn't have before.

The insomnia was driving me crazy and it still is. I feel a bit delirious but at least I can stay awake to watch the Olympics during the night, one positive that's come out of it. So, back to square one for me but I won't give up hope, I will keep you informed of any progress.

Effie - Melbourne Australia

[Guest guest]

Effie and all,

After discussing my medication options with my Neuro to combat the

stiffness and weakness as well as the spasms, I have not been the

usual strong, positive and vitalily filled person I was when I

started LDN.

I am happy I am not pre-LDN condition, with the fatigue and bladder

problems, but I dont feel strong in my standing and transfers the

last few weeks.

Now I realise, that dropping the Baclofen entirely was not good for

me, but I expected some changes and alittle trial and error with it,

so, now, I am back onto only half the baclofen dose in the morning,

and half at night, along with half the valium in the morning as

suggested for longer spasm relief thoughout the day.

As this routine settles, I hope the lDN can kick back in and bring me

up to speed again with strenght and vitality.

All the best with your LDN from now on Eff, take care..hang in there

as I will too. I will update when and if there is a more possible

result, or even a negative as I believe we should mention the good

with the bad.

Friday

GO GREECE

GO AUSSIES

[Guest guest]

Doug,

That is really great news that you have been able to make all those

positive changes and bring your health under control!

Congratulations!

Addy