Brief intro

September 17, 2002

Hi, Barbara;

I will be happy to help you with any questions you may have on

enzymes. You have several companies to choose from as a

source, check the FILES section on the left for a listing. Please

feel free to post, call or email me with questions, though the

parents here will probably be more helpful to you than I.

Good luck, and welcome!

Devin

> Hi everyone,

> I just wanted to take a few moments to introduce myself. I am

a

> mother of two autistic boys ages 4 and 6. We have tried many

popular

> interventions with limited success. I thought I would take a look

at

> enzymes and see if they help. Can anyone tell me the best

place to

> start? I buy other sups from Kirkman and I see they sell

enzymes, but

> I'm not sure which ones work best. Are there any possible

undesirable

> effects? Has anyone ever experienced a regression due to

enzyme use?

> What positive effects has anyone witnessed in their children?

Any

> advice is appreciated.

>

> Thanks in advance,

>

> Barbara

September 17, 2002

Thanks Devin,

I have received several files already and I'll read them when the

kids go to bed. I'll let you know if I have any questions. I have

heard some great things about you and your company so it sure is nice

to get a personal welcome directly from you. I'll let you know if I

have any questions.

Barbara

> > Hi everyone,

> > I just wanted to take a few moments to introduce myself. I am

> a

> > mother of two autistic boys ages 4 and 6. We have tried many

> popular

> > interventions with limited success. I thought I would take a look

> at

> > enzymes and see if they help. Can anyone tell me the best

> place to

> > start? I buy other sups from Kirkman and I see they sell

> enzymes, but

> > I'm not sure which ones work best. Are there any possible

> undesirable

> > effects? Has anyone ever experienced a regression due to

> enzyme use?

> > What positive effects has anyone witnessed in their children?

> Any

> > advice is appreciated.

> >

> > Thanks in advance,

> >

> > Barbara

June 29, 2003

Hi, Don! I had bilateral TKR last year and I can bicycle any day, just not real vigorously. Uphill is a strain on the knees. Usually, I use the stationary bike at the health club for about 20-40 minutes per day. It is good to keep the knees bending, once you are able to go all the way around, but I wouldn't overdo. I have the best results by working on several different kinds of machines. That way, I am less tired out for the rest of the day. But definitely yes, you can bicycle after the surgery, assuming that it is done right and that you get to a good PT.

good luck! Feel free to ask any more questions that arise. There are knowledgeable people here to help you anytime!

FS

June 29, 2003

PLEASE REMOVE ME FROM EMAIL

CM55555@...

June 29, 2003

At 10:52 PM 6/29/2003 -0400, you wrote:

>Feel free to ask any more questions that arise. There are knowledgeable

>people here to help you anytime!

Thanks, I have a bunch.

What is a typical PT routine?

Anyone have problems with the brake and throttle in driving very soon after

the surgery? It is hoped that I can do sit down duty at the museum but I

still have to drive myself there.

I am hoping to return to back packing as soon as I can. I have not been

able to back pack for many years because of the knees.

I run my own business doing custom wood working and hope to do at least

some work as soon as possible.

These are some of the things I am concerned about, more questions will come

later.

Awl Knotted Up - Custom woodworking

Don Bowen donb@...

Valley Center, CA http://www.braingarage.com

July 1, 2003

Hi, Don!

I was able to drive at 5.5 weeks post-op, but I know others who have driven sooner and some who have not been able to drive until later. You will learn that your knees have their own agenda and everyone is different in the healing process, so this will be a sort of guideline for you. It is as if the body has its own mind and its own schedule and it will not be hurried up a bit.

The PT schedule also varies by your own personal strength, flexibility, and general health. That's why the exercises pre-op are helpful. They can shorten the recovery period. Upper body strength is a plus, since you have to rely on that part to lift you at the beginning. Strong hams and glutes are very beneficial, but you probably have those, as a result of your other activities. At first when you wake up, you can't lift your legs at all and sometimes that scares people. But slowly you will regain the use of the muscles. It is only a temporary paralysis of a sort.

I had in-home PT for the first 2 weeks, and that consisted of doing leg lifts; bending the knee one at a time, while lying down, moving the foot toward the butt; and rolling a coffee can or ball under the leg in order to increase the bend. We also did some walking outside.

After the first 2 weeks, I had out-of-home PT 3 times a week and that was more rigorous. It involved bending, stretching, and lifting. It actually was not nearly so difficult as the PT I needed a year before this, when I had arthroscopic surgery done on one of the knees. That was really the wrong surgery done on me, and I never fully recovered from it. It was done by a different doc, needless to say.

Find a good, experienced PT before the surgery so that you will know where you want to go. This should be someone you can trust to have lots of experience dealing with replacements and someone to whom you can direct the many questions you will have. Keep on asking questions and do exactly as much as you are told. If you do more, you may tire yourself out to the point that you slow the recovery down, and if you do less, you will not recover the use of the legs as soon as you want. I asked a multitude of questions, mostly concerning how much I could push myself and how much I needed to baby myself.

It is a slow process and it will go at its own pace. You wil need to pace your intake of pain meds so that you have them about an hour before PT, so that you can get the maximum benefit and move the most. You also will need to ice the knees after the PT and at other times during the day and night, in order to reduce the swelling and discomfort.

The PT is just as important as the surgery, if not more so. Some people never do get the range of motion they want because they will not do what the PT tells them to do "because it hurts." The PT will be able to tell you when to push through the pain and when to cut it short because of the pain. It is a balance. That's why you need a good PT.

You are going to go into this with a great deal of knowledge and that is always an advantage. It is an important part of the whole thing. Good luck!

FS

March 1, 2005

Before I was officially accepted into the group, I did send an e-mail on 02/27

titled, 'unvaccinated child with Autism.' This e-mail doubles as an intro if

you did in fact recieve it . If not, I would be happy to send it again.

Thank You

Anita

__________________________________________________

March 28, 2006

Hi,

Here goes for the brief intro:

, age 35, SAHM to three wonderful kids (ages 4,

4, and 2), dx RA for four years now, taking MTX,

prednisone and just started Humira.

I am so very thankful to be a part of this wonderful

group of supporting people. I have only been a member

for under a week but feel so much better knowing there

are others out there who understand!

__________________________________________________

March 28, 2006

Glad you found us.

Main <thmain@...> wrote:

Hi,

Here goes for the brief intro:

, age 35, SAHM to three wonderful kids (ages 4,

4, and 2), dx RA for four years now, taking MTX,

prednisone and just started Humira.

I am so very thankful to be a part of this wonderful

group of supporting people. I have only been a member

for under a week but feel so much better knowing there

are others out there who understand!

__________________________________________________

March 29, 2006

Toni,

My lab shows auto-immune in just about everything. I have multiple nodules in

both lungs. They were disovered 3 months ago at Which time had a lung biopsy

with it all negative. I just had another cat scan and I see my doctor tomorrow.

I have the scan report as I went to the lab and picked it up. Nodules are still

there and radiology said to retest in 6 months. I hope that the doctor agrees.

Please tell me about your lung problems.

BVan (Betty)

<<I am currently trying to recover from auto-immune related lung

problems >>

March 29, 2006

Hi Betty,I like you have had severe probs with my lungs.It all

started when i was taking mtx.I haven't got any nodules yet,fingers

crossed,but i do have scaring,which i have been told it is

emphasema.My damage is to the lower lungs,my upper part of my lungs

are ok.My doc wanted me to have a biopsy,but i decided to wait a

while.I do have severe shortage of breath,but my inhalers do

help,its the coughing that gets me down,epecially when i go out of a

cold room into a warm one,or the other way around.I will be thinking

about you tomorrow,good luck! hugs

>

> Toni,

>

> My lab shows auto-immune in just about everything. I have

multiple nodules in both lungs. They were disovered 3 months ago at

Which time had a lung biopsy with it all negative. I just had

another cat scan and I see my doctor tomorrow. I have the scan

report as I went to the lab and picked it up. Nodules are still

there and radiology said to retest in 6 months. I hope that the

doctor agrees.

> Please tell me about your lung problems.

>

> BVan (Betty)

>

> <<I am currently trying to recover from auto-immune related

lung

> problems >>

>

March 29, 2006

HI all,

Here's my brief intro and maybe a bit of complaining afterwards

I am , 40, live in NE Oklahoma, on disability. Partner to Amy, co-mom to 2

wonderful boys, both special needs one is 7 w/ Down syndrome and Autism the

other is 12 with ADHD and Aspergers Syndrome. Also have a friends 16 yo daughter

living with us for right now.

Me, well, RA, finally dx'd in 2001. Severe asthma (been intubated 13 times

last count), degenerative disk disease, (spinal fusion in 98). OA, and diabetes

brought on by long term high dose Prednisone use. Also caused bilateral

cataracts which I had repaired in 2002.

I am on MTX, Plaquenil, Folic Acid now, was on Humira but couldn't afford the

copay. Waiting for approval for Remicade.

now, for the complaining

I have been sick almost constantly since January. Had my gallbladder out in

Jan, Knee surgery in Feb. Then got a stomach virus that ended me up in the

hospital for dehydration. Now, I have bronchitis, and am back on Pred (60mg

/day) and my blood sugar is going thru the roof. I'm on insulin when I'm on

Pred, and it helps, but I am in the Prednisone fog right now. I'm just tired of

being sick all the time.

T

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

New Messenger with Voice. Call regular phones from your PC and save big.

March 29, 2006

Hiya ,Pres caused my diabetes also,its trying to find that

balance to keep the sugar under control,I find the night sweats are

really awful,sometimes i'm up changing the bed all hours.I really

understand how you feel with the being sick all the time.Its so

soul destroying at times.You certainly have your hands full thats

for sure.Keep your chin up,its got to get better for you,you have

had a rough ride lately,lets hope it starts to ease up,and give you

some happier times.Good look with rem,i am on enbrel and mtx,i am

doing ok at the moment,so fingers crossed!Take care all of you,hugs

>

> HI all,

> Here's my brief intro and maybe a bit of complaining

afterwards

> I am , 40, live in NE Oklahoma, on disability. Partner to

Amy, co-mom to 2 wonderful boys, both special needs one is 7 w/ Down

syndrome and Autism the other is 12 with ADHD and Aspergers

Syndrome. Also have a friends 16 yo daughter living with us for

right now.

> Me, well, RA, finally dx'd in 2001. Severe asthma (been

intubated 13 times last count), degenerative disk disease, (spinal

fusion in 98). OA, and diabetes brought on by long term high dose

Prednisone use. Also caused bilateral cataracts which I had repaired

in 2002.

>

> I am on MTX, Plaquenil, Folic Acid now, was on Humira but

couldn't afford the copay. Waiting for approval for Remicade.

>

> now, for the complaining

> I have been sick almost constantly since January. Had my

gallbladder out in Jan, Knee surgery in Feb. Then got a stomach

virus that ended me up in the hospital for dehydration. Now, I have

bronchitis, and am back on Pred (60mg /day) and my blood sugar is

going thru the roof. I'm on insulin when I'm on Pred, and it helps,

but I am in the Prednisone fog right now. I'm just tired of being

sick all the time.

>

> T

>

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

> New Messenger with Voice. Call regular phones from your PC

and save big.

>

March 29, 2006

,

Checking my messages just now I realize I posted wrongly thinking

your post was from Toni. She has lung problems too. I don't know

where my head was.

I had looked at your post again to see if I really remembred if you

said <haven't got any nodules yet> and yep you did. That " yet " leads

me to the question does that mean there is a connection there that

you expect nodules to develope?

BVan (Betty)

> >

> > Toni,

> >

> > My lab shows auto-immune in just about everything. I have

> multiple nodules in both lungs. They were disovered 3 months ago

at

> Which time had a lung biopsy with it all negative. I just had

> another cat scan and I see my doctor tomorrow. I have the scan

> report as I went to the lab and picked it up. Nodules are still

> there and radiology said to retest in 6 months. I hope that the

> doctor agrees.

> > Please tell me about your lung problems.

> >

> > BVan (Betty)

> >

> > <<I am currently trying to recover from auto-immune related

> lung

> > problems >>

> >

March 29, 2006

My name is Janet and I'm 34 years old, I feel 80. I have been told I

was born with juvenile RA, but in the past 2 years the pain and

deformities have made so I can't work. I have been diagnosed with the

Ra, Fibro, and Osteo. I have been turned down for SSI twice in 2

years and am waiting for a court date, which they say could take

another year and a half. I have been forced to live with my sister

these past 2 years. I haven't been able to get a medical card yet, so

the only thing I can take for the pain is ibuprofen. There are days I

just want to curl up and not get out of bed. I have 2 cats, Angel(my

boy) and Casey(my girl) who help keep my spirits up. Anyone out there

with any advice, bear in mind I have no income what so ever. Thank you

March 29, 2006

Janet, sorry to hear that you are not feeling good and that you are in a

difficult situation.

Do you have a lawyer to help you?

Most drug manufacturers have patient assistance programs to help you get the

meds you need either for free or at reduced cost:

http://www.phrma.org/

Another possibility: you can receive care and medication via participation

in a clinical trial.

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Brief intro

> My name is Janet and I'm 34 years old, I feel 80. I have been told I

> was born with juvenile RA, but in the past 2 years the pain and

> deformities have made so I can't work. I have been diagnosed with the

> Ra, Fibro, and Osteo. I have been turned down for SSI twice in 2

> years and am waiting for a court date, which they say could take

> another year and a half. I have been forced to live with my sister

> these past 2 years. I haven't been able to get a medical card yet, so

> the only thing I can take for the pain is ibuprofen. There are days I

> just want to curl up and not get out of bed. I have 2 cats, Angel(my

> boy) and Casey(my girl) who help keep my spirits up. Anyone out there

> with any advice, bear in mind I have no income what so ever. Thank you

March 30, 2006

Betty,

This is the same thing that was going on with me. It started with a viral

illness, sore throat, hourseness, high fever and quick onset. That lasted for

a about a week. Then came this horrible cough that would not quit. It was

too the point that the coughing fits were so bad I could not catch my breath

and I was coughing to the point of vomiting. The cough was hacking and only

on rare occasion did I actually cough something up and it was chucks of mucous.

So I dragged myself to the doc. He took one look at me and put me on Advair

inhaler twice a day, tesselon perles for cough and I got a large shot of

Kenalog in the office to see if we can get this to settle down. He also said

part of the problem is allergy related so I am taking claritin and sudafed. I

am also taking Darvocet for pain. I am VERY sore from all the coughing.

It has been almost two weeks. I am feeling a little better but not much.

My doc said it is post viral syndrome....my rheummy went a bit farther to say

with my RA that its cytokine storm. Its when the immune system turns on to

attack an invader but one the invader is gone it forgets to turn off. Its

what kills people who get the flu cause the response is so fast and sooo

severe.

I am making an appnt to return back to see my GP for later this week. I am

hoping another large shot of steriods, more tesselon, more advair and I would

like him to add some nasal steriod spray can help. I am also hoping he can

tell me if its OK to go back on my RA meds. I am getting really painful. The

Kenalog did a good job with the pain...but its wearing off.

My GP did not recommend lung biopsy as he says he has been seeing a lot of

this lately...he is unsure why. But was not surprised with my case due to my

history of auto-immune disease. He also told me that normal healthy people

get this too and it can take up to 12 weeks to go away with no treatment.

That it can turn far worst quickly and can kill people. It can also cause

permanent scarring of the lungs too. So I guess it was a good thing I could

not

breath and went in.

My rheummy on the other hand is being a total idiot. I asked since this is

auto-immune should I start back on my meds to see if this helps the lungs

heal. He told me basically if I was in pain do whatever!!! GGGRRR!!!!! I

let

him know there was a new rheummy moving to town in July....guess where I

shall be then.

It really pisses me off when you get these docs and they charge huge

fees....since the insurance pays for the big work up. Then they swear they can

get

you under control. Then after a few months they realize this is going to be

work and seem to just kick you too the curb!!!

Toni

In a message dated 3/30/2006 10:27:51 A.M. Central Standard Time,

writes:

Date: Wed, 29 Mar 2006 12:19:14 -0600

From: " Betty " <bvanOmega@...>

Subject: Re: Re: Brief Intro

,

The lung biopsy was not really bad as they give light anesthesia. The doctor

told me before that the biopsy was the " least invasive " procedure. If that

was least I don't want to think about what a more could be. He also said that

if they were still there with the scan I just had he would do more

diagnostics.

My problems presented with a cough. It was such that I would loose my breath

and several times 30 seconds and my husband would have been calling 911. He

stayed very near me as I realized that if I lost my breath when we were in

separate rooms I would probably not make it to him. Thankfully I can say the

cough is a lot better. The pulmonary doc said that the nodules could not be

related to the cough and that it was probably inflammation and referred me to a

Rheumoatologist. That doc acted like it was completely unreasonable that

inflammation could cause a cough. Stupid if I do say so myself. After I see

what

the pulmonary doc says tomorrow I will be changing rheumatologist.

I hope your cough clears also. I had been taking liquids, over the counter

and prescription. Then he prescribed " pearls " benzonatate and that works far

better. I has no codine. My daughter also has cough problems lately and he

doctor also put her on these pearls.

Thanks for the information. The more infomation we have the better.

BVan (Betty)

[ ] Re: Brief Intro

Hi Betty,I like you have had severe probs with my lungs.It all

started when i was taking mtx.I haven't got any nodules yet,fingers

crossed,but i do have scaring,which i have been told it is

emphasema.My damage is to the lower lungs,my upper part of my lungs

are ok.My doc wanted me to have a biopsy,but i decided to wait a

while.I do have severe shortage of breath,but my inhalers do

help,its the coughing that gets me down,epecially when i go out of a

cold room into a warm one,or the other way around.I will be thinking

about you tomorrow,good luck! hugs

>

> Toni,

>

> My lab shows auto-immune in just about everything. I have

multiple nodules in both lungs. They were disovered 3 months ago at

Which time had a lung biopsy with it all negative. I just had

another cat scan and I see my doctor tomorrow. I have the scan

report as I went to the lab and picked it up. Nodules are still

there and radiology said to retest in 6 months. I hope that the

doctor agrees.

> Please tell me about your lung problems.

>

> BVan (Betty)

>

> < lung

> problems >>

>

> [Non-text portions of this message have been removed]

>

March 30, 2006

You need and deserve help! Have you contacted your county social

services?

Sierra