Newbie Questions

[Guest guest]

Tana,

I'll do my best to help you below.

> Hello,

> I just started giving my 8 yr old daughter (Jacquie) enzymes a few

days ago. I started with Kirkman's Complete because I thought it

would be easier since the one product covers all food groups. I may

switch to Houston's later when she is up to full dose because

Houston's is more economical. I want to wait until she is taking the

full dose before I switch though because I don't want to ask the

school and daycare to divide up those capsuls.

-I'm not sure I understand what you mean. My son takes both the

Houston enzymes. The nurse gives him two of each for lunch, one of

each for snacks. All the food groups are covered. The nurse has

done just fine with this plan.

My questions right now are about dosing. Do I give her the same

amount of enzyme for a snack as I do for a meal? I asked the rep at

Kirkman's and she said I could try giving her less for a snack but if

that wasn't enough I should give her the whole dose. I asked her how

I would know if I was giving her too much or too little and she said

mostly I would be able to tell by the way her bm's looked. Jacquie

is toilet trained and likes her privacy in the bathroom. There is

just know way she is going to let me in there to inspect her poops.

-I hadn't heard this about Kirkman's enzymes. What exactly were you

instructed to look for? Too loose? Color? I'm not sure how this

would relate to breaking down proteins. It is the amount of food

that should be considered for dosing, although my son's stools did

darken after enzymes, but that is not the determining factor for

dosing. When first starting enzymes, it is not uncommon to have

diarrhea. Do you think that is what the phone lady meant? If so,

then you might cut back on the dose just to start with. Surely she

didn't mean you are to check stools every single time to determine if

the enzymes are working. Just looking at stools would not be an

indicator of peptides being broken down anyway (in my

understanding). The stools could be better or worse, but that might

not indicate the enzymes are preventing peptides.

Does anyone have any suggesti

> ons? Do most of you find you can use less with a snack or do you

always need to give the full dose?

-In my opinion, you should be able to give a reduced dose with a

snack. If it is a smaller amount of gluten and/or casein, you could

reduce the dose accordingly. For a larger amount of gluten/casein,

you would increase the dose. I would check to see if there is a

dosing sheet with your order.

And also, in the evening she never really sits down and eats a whole

meal. She will only eat a little bit of her dinner at dinner time so

I save it and about an hour later she will eat a little bit more,

then later a little bit more..... So I have been giving her a little

bit of the enzymes everytime she starts to eat something. Is that

ok?

-You have about 90 minutes before you would need to give another

dose. I always go less than that, but for most kids, 90 minutes

should be ok. Food moves through the stomach usually in about 90

minutes, so you have to give another dose for the new food entering

the stomach.

And one more thing, I want to make sure that I am understanding the

recent posts about Kirkman's products vs. Houston's products, are the

Houston's enzymes the only ones that can be used with casein/gluten

foods? Right now Jacquie is still gfcf but I would sure love it if

she didn't have to be and I know she would love it too.

-There has been some back and forth on Kirkman's stand on the purpose

of their enzymes. Currently, they are saying if the parent wishes to

use the enzymes with gluten/casein foods, they may, assuming there is

no other restrictive medical condition. Houston's has always said if

the parent wishes to use the enzymes with gluten/casein foods, they

may, assuming there is no other restrictive medical condition.

-My son has been off the diet using the Houston enzymes for over six

months. His story is in the Files section in the yellow box at this

site.

Thanks for any advise you can share.

>

> Tks,

> Tana

-Anytime,

[Guest guest]

I will see if I can offer anything new (and welcome to the group!).

The school nurse keeps one bottle of Peptizyde and one bottle of Zyme

Prime with DeFelice on them. My boys come to the office 30 minutes

before their lunch times to get one of each capsule (they are in

different grades, so go at different times). This was the nurse's

idea and it has worked well. It sounds like your school is

cooperating, yeah!

Each boy takes 1 capsule of each product for each meal to cover all

food groups. Because I use two different products, it is easier and

more economical for me to give one appropriate capsule depending on

the snack. So if a snack has any casein or gluten, I give 1

Peptizyde, if anything else I give one Zyme. But if it is a peice of

fresh fruit, I don't give any because fresh fruit has enzymes of its

own (not destroyed by cooking). I can also plan a snack accordingly

and give something with no dairy or with dairy. I would imagine that

a snack should take less enzymes that a full meal. One exception I

can think of would be a snack with dairy. Because we are very

sensitive to casein, I would probably have to give a full dose just

to make sure all the casein got zapped...I mean, broken down. .

However, you will just need to experiment a bit to see what works

best.

I am not sure checking stools will help at first because loose stools

are very common and wouldn't really indicate whether all the peptides

are being broken down. However, you can always check and see if it

makes any difference. My boys are old enough to not want their stools

checked. This was important when my now-8-year-old was being treated

for Clostridia. Another mom gave me an idea which worked quite well.

Take the lid off of the toilet and unhook the chain which connects

the handle to the plunger inside the toilet. Now, just say that the

toilet isn't working right and she can just go and then you will fix

it later. This way she doesn't accidentally flush as she probably

will automatically. You can do your " checking " and then flush or put

the chain back on when you need to.

You can gage if it seems like " enough " enzymes by her reactions, if

she has any. We always got a migraine 2-3 hours of casein ingestion,

so that was easy enough to tell, although a bit painful, lol. Look

for upset behavior, wetting, red ears, etc. whatever is her

particular " reaction " to things. Monitoring her behavior, moods and

physical reactions will tell you best whether she is getting enough.

Also, you may find that she does not as much enzymes with some foods,

but needs more with other foods.

She may have the " grazing " habit in the evening. was right

about the enzymes being in the gut about 90 minutes. What you are

doing by giving a little enzymes with her little bits of food will

work too. That's a good system. Another idea would be what I do for

myself. Put the enzymes in a cool drink and have her sip or drink it

as she eats. This will also be putting a small supply of enzymes in

fresh as she eats. Enzymes in a cool drink will last a good 4 hours

(find for school lunch boxes).

I know that you can definitely use the Houston enzymes for

gluten/casein food whenever you like and however you like (we have

been doing this for 6 months). You will be the best judge to find out

what works best for your daughter and your situation.

.

[Guest guest]

Hi ,

Thanks so much for your help. Please see my reply below yours.

Tana,

I'll do my best to help you below.

> Hello,

> I just started giving my 8 yr old daughter (Jacquie) enzymes a few

days ago. I started with Kirkman's Complete because I thought it

would be easier since the one product covers all food groups. I may

switch to Houston's later when she is up to full dose because

Houston's is more economical. I want to wait until she is taking the

full dose before I switch though because I don't want to ask the

school and daycare to divide up those capsuls.

-I'm not sure I understand what you mean. My son takes both the

Houston enzymes. The nurse gives him two of each for lunch, one of

each for snacks. All the food groups are covered. The nurse has

done just fine with this plan.

Kirkman's dose is 2 caps with each meal and I thought that was equivelent to 1

cap each of Houston's products. Because I am starting her out at 1/2 the

recommended dose, I am giving her 1 cap with each meal which I believe would be

equivelent to 1/2 of each of Houston's enzymes. Once she is up to full dose, I

could switch to Houston's for the meals and give her 1 cap of each. However, if

I only need to give her 1/2 the dose for snacks then I would have to break up

the

capsuls.

My questions right now are about dosing. Do I give her the same

amount of enzyme for a snack as I do for a meal? I asked the rep at

Kirkman's and she said I could try giving her less for a snack but if

that wasn't enough I should give her the whole dose. I asked her how

I would know if I was giving her too much or too little and she said

mostly I would be able to tell by the way her bm's looked. Jacquie

is toilet trained and likes her privacy in the bathroom. There is

just know way she is going to let me in there to inspect her poops.

-I hadn't heard this about Kirkman's enzymes. What exactly were you

instructed to look for? Too loose? Color? I'm not sure how this

would relate to breaking down proteins. It is the amount of food

that should be considered for dosing, although my son's stools did

darken after enzymes, but that is not the determining factor for

dosing. When first starting enzymes, it is not uncommon to have

diarrhea. Do you think that is what the phone lady meant? If so,

then you might cut back on the dose just to start with. Surely she

didn't mean you are to check stools every single time to determine if

the enzymes are working. Just looking at stools would not be an

indicator of peptides being broken down anyway (in my

understanding). The stools could be better or worse, but that might

not indicate the enzymes are preventing peptides.

The rep at Kirkman's told me that if I wasn't giving her enough enzymes I may

still see some undigested food in her stools, and if I was giving her enough the

stools would look firmer and well formed (like a normal stool). She said if I

was giving her too much she may have diarrhea.

Does anyone have any suggesti

> ons? Do most of you find you can use less with a snack or do you

always need to give the full dose?

-In my opinion, you should be able to give a reduced dose with a

snack. If it is a smaller amount of gluten and/or casein, you could

reduce the dose accordingly. For a larger amount of gluten/casein,

you would increase the dose. I would check to see if there is a

dosing sheet with your order.

The dosing sheet with my order says to use 2 caps or 1/4 tsp with a meal. It

also says to start with 1/2 the recommended dose and gradully work up to the

full dose OR MORE AS NEEDED. So this is where I get confused. How do I know if

she needs more or less? It sounds like you are giving twice the suggested dose

with a meal and the regular amount with a snack. How did you figure out how

much was the right dose? Maybe I am making to much out of this. The rep at

Kirkmans also told me that these enzymes are very safe and it won't hurt her to

have more than she needs but I am also conserned about the cost. I don't want

to be giving her more than she needs and waist them but of cource I don't want

to give her too little and not get the full benefit from them.

And also, in the evening she never really sits down and eats a whole

meal. She will only eat a little bit of her dinner at dinner time so

I save it and about an hour later she will eat a little bit more,

then later a little bit more..... So I have been giving her a little

bit of the enzymes everytime she starts to eat something. Is that

ok?

-You have about 90 minutes before you would need to give another

dose. I always go less than that, but for most kids, 90 minutes

should be ok. Food moves through the stomach usually in about 90

minutes, so you have to give another dose for the new food entering

the stomach.

That sounds like about what I have been doing. I have been giving it to her

about once an hour (usually about 3 times total for the evening).

And one more thing, I want to make sure that I am understanding the

recent posts about Kirkman's products vs. Houston's products, are the

Houston's enzymes the only ones that can be used with casein/gluten

foods? Right now Jacquie is still gfcf but I would sure love it if

she didn't have to be and I know she would love it too.

-There has been some back and forth on Kirkman's stand on the purpose

of their enzymes. Currently, they are saying if the parent wishes to

use the enzymes with gluten/casein foods, they may, assuming there is

no other restrictive medical condition. Houston's has always said if

the parent wishes to use the enzymes with gluten/casein foods, they

may, assuming there is no other restrictive medical condition.

-My son has been off the diet using the Houston enzymes for over six

months. His story is in the Files section in the yellow box at this

site.

Thanks for any advise you can share.

>

> Tks,

> Tana

-Anytime,

Tks,

Tana

[Guest guest]

Hi ,

Thank you for your comments and suggestions. Sorry I didn't respond sooner, I

just now saw your post. I am always so far behind on reading my e.mails and

when I am waiting for an answer to one of my questions I just skim thru the

posts to see if anyone has responded. I saw 's response but some how I

missed yours. I didn't mean to ignore you, really. You asked if my daughter's

school is cooperating, and they are (I'm so thankfull). All I had to do was

sign a form allowing them to give her over the counter meds at school. I am so

glad to hear that you have had success with using Houston's enzymes with gluten

and casein foods. I would really like to let my daughter have some of those

foods again. I'm not quite ready to try yet but hopefully soon. Do you know if

the enzymes work for people with celiac disease? My daughter's father had

celiac when he was a child but grew out of it, and his dad had celiac all of his

life. I have never had Jacquie tested for celiac but I have always wondered if

may

be that was part of her problem.

Tks,

Tana

>

> I will see if I can offer anything new (and welcome to the group!).

>

> The school nurse keeps one bottle of Peptizyde and one bottle of Zyme

> Prime with DeFelice on them. My boys come to the office 30 minutes

> before their lunch times to get one of each capsule (they are in

> different grades, so go at different times). This was the nurse's

> idea and it has worked well. It sounds like your school is

> cooperating, yeah!

>

> Each boy takes 1 capsule of each product for each meal to cover all

> food groups. Because I use two different products, it is easier and

> more economical for me to give one appropriate capsule depending on

> the snack. So if a snack has any casein or gluten, I give 1

> Peptizyde, if anything else I give one Zyme. But if it is a peice of

> fresh fruit, I don't give any because fresh fruit has enzymes of its

> own (not destroyed by cooking). I can also plan a snack accordingly

> and give something with no dairy or with dairy. I would imagine that

> a snack should take less enzymes that a full meal. One exception I

> can think of would be a snack with dairy. Because we are very

> sensitive to casein, I would probably have to give a full dose just

> to make sure all the casein got zapped...I mean, broken down. .

> However, you will just need to experiment a bit to see what works

> best.

>

> I am not sure checking stools will help at first because loose stools

> are very common and wouldn't really indicate whether all the peptides

> are being broken down. However, you can always check and see if it

> makes any difference. My boys are old enough to not want their stools

> checked. This was important when my now-8-year-old was being treated

> for Clostridia. Another mom gave me an idea which worked quite well.

> Take the lid off of the toilet and unhook the chain which connects

> the handle to the plunger inside the toilet. Now, just say that the

> toilet isn't working right and she can just go and then you will fix

> it later. This way she doesn't accidentally flush as she probably

> will automatically. You can do your " checking " and then flush or put

> the chain back on when you need to.

>

> You can gage if it seems like " enough " enzymes by her reactions, if

> she has any. We always got a migraine 2-3 hours of casein ingestion,

> so that was easy enough to tell, although a bit painful, lol. Look

> for upset behavior, wetting, red ears, etc. whatever is her

> particular " reaction " to things. Monitoring her behavior, moods and

> physical reactions will tell you best whether she is getting enough.

> Also, you may find that she does not as much enzymes with some foods,

> but needs more with other foods.

>

> She may have the " grazing " habit in the evening. was right

> about the enzymes being in the gut about 90 minutes. What you are

> doing by giving a little enzymes with her little bits of food will

> work too. That's a good system. Another idea would be what I do for

> myself. Put the enzymes in a cool drink and have her sip or drink it

> as she eats. This will also be putting a small supply of enzymes in

> fresh as she eats. Enzymes in a cool drink will last a good 4 hours

> (find for school lunch boxes).

>

> I know that you can definitely use the Houston enzymes for

> gluten/casein food whenever you like and however you like (we have

> been doing this for 6 months). You will be the best judge to find out

> what works best for your daughter and your situation.

>

> .

[Guest guest]

>Would it be better to begin chelation with DMSA and add ALA later

>to avoid adding more burden to the liver?

DMSA is hard on the liver.

ALA is liver protective.

Andy . . .. . . . . .

[Guest guest]

Hi All;

Please excuse me if you have had the " newly diagnosed " questions a gazillion

times, but here goes:

I am a 39 year old nurse. I have been recently diagnosed with RA. I have no

doubt that the diagnosis is correct. My rheum. started me off with pred,

celebrex, and plaquenil. I got a little better briefly, then worse. So we

added arava. Again I got better, actually quite a bit better, but within a

month or so, worse again. So now we are about to try remicade, which of

course I am very afraid of but will try. I have messed up hands, shoulders,

knees, feet, neck and one hip. I am RF negative, though, which I think has

made the Dr. start off my treatment kind of slowly. I finally went to a

podiatrist to get new orthotics, and the xrays showed deformities in both

feet, which seemed to make the rhuem decide it really was serious and that's

when we discussed remicade. I have read that 15% of people with RA are

seronegative.

My questions center mainly on pain control, I guess. I am a registered nurse

on a hospital med/surg unit. I literally run all day long, from around 7am

till 4pm, give or take. I am in pain all the time. The rheum actually told

me one time he " treats the swelling, not the pain " . What the heck is

that???????!!!!!! Is that always the attitude? Some days I cannot work

because my hands or knees or neck will not tolerate it. What do the rest of

you do for pain control? I had a separated shoulder once, and the Dr gave me

vicoprofen, which helped a lot. Now I have more pain than that on a daily

basis, it even wakes me up at night, and I get celebrex? I don't get it. I

don't want to end up addicted to narcotics or anything, but is the prevailing

attitude of the docs " it's RA, just deal with it " ?

Thanks for bearing with me. By the way, from reading your posts, you sound

like the nicest bunch of people I have ever " met " !

Cary in IL

[Guest guest]

Welcome Cary. Sorry for the reason you found us. Pain control is a hot

topic around here. It seems some doctors have no problems with prescribing

pain meds and others refuse to give anything more than Tylenol. Some will

refer patients to pain management clinics. It may be a good idea to

consider finding another rheumatologist. Chronic untreated pain can cause a

host of other health problems including depression, high blood pressure and

stress. There are many people that can continue working when pain is

adequately treated.

I have a website where I put links to articles and have collected several on

pain. There are also several good links that and I have posted before

that haven't made it onto the website yet. I hope these articles help.

Our groups website with pain articles

http://rheumatoid.arthritis.freehosting.net/pain.html

Chronic Pain Fact Sheet:

Unrelieved pain has many negative health consequences including, but not

limited to: increased stress, metabolic rate, blood clotting and water

retention; delayed healing; hormonal imbalances; impaired immune system

and

gastrointestinal functioning; decreased mobility; problems with appetite

and

sleep, and needless suffering. CNP also causes many psychological

problems,

such as feelings of low self-esteem, powerlessness, hopelessness, and

depression.

http://www.cssa-inc.org/Articles/Chronic_Pain.htm

MANAGEMENT OF CHRONIC NON-CANCER PAIN: A GUIDE TO APPROPRIATE USE OF OPIOIDS

http://www.jenniferschneider.com/articles/opiods.html

Management of Severe Pain: A Rational Approach to the Use of Opioids

http://rheumatology.hss.edu/phys/gr/waldman_lec_tran.asp

" Common Opioid Myths and Facts " :

http://www.nhpco.org/public/articles/PC03.A3.PDF

" Myths and Facts: When Opioids Are Part of the Pain Management Plan " :

http://www.jcaremanagement.com/html/pain__myths_and_facts.html

" Narcophobia: Part 1: Defining the Problem "

http://www.cssa-inc.org/Articles/narcophobia.htm

" Chronic Pain: 2. The Case for Opioids " :

http://www.hosppract.com/issues/2000/09/brook.htm

Tolerance: It was previously thought that the development of analgesic

tolerance limited the ability to use opioids efficaciously on a

long-term basis for pain management. Tolerance, or decreasing pain

relief with the same dosage over time, has not proven to be a prevalent

limitation to long-term opioid use. Experience with treating cancer pain

has shown that what initially appears to be tolerance is usually

progression of the disease. Furthermore, for most opioids, there does

not appear to be an arbitrary upper dosage limit, as was previously

thought.

http://www.ampainsoc.org/advocacy/opioids.htm

a

> Hi All;

>

> Please excuse me if you have had the " newly diagnosed " questions a gazillion

> times, but here goes:

>

> I am a 39 year old nurse. I have been recently diagnosed with RA. I have no

> doubt that the diagnosis is correct. My rheum. started me off with pred,

> celebrex, and plaquenil. I got a little better briefly, then worse. So we

> added arava. Again I got better, actually quite a bit better, but within a

> month or so, worse again. So now we are about to try remicade, which of

> course I am very afraid of but will try. I have messed up hands, shoulders,

> knees, feet, neck and one hip. I am RF negative, though, which I think has

> made the Dr. start off my treatment kind of slowly. I finally went to a

> podiatrist to get new orthotics, and the xrays showed deformities in both

> feet, which seemed to make the rhuem decide it really was serious and that's

> when we discussed remicade. I have read that 15% of people with RA are

> seronegative.

>

> My questions center mainly on pain control, I guess. I am a registered nurse

> on a hospital med/surg unit. I literally run all day long, from around 7am

> till 4pm, give or take. I am in pain all the time. The rheum actually told

> me one time he " treats the swelling, not the pain " . What the heck is

> that???????!!!!!! Is that always the attitude? Some days I cannot work

> because my hands or knees or neck will not tolerate it. What do the rest of

> you do for pain control? I had a separated shoulder once, and the Dr gave me

> vicoprofen, which helped a lot. Now I have more pain than that on a daily

> basis, it even wakes me up at night, and I get celebrex? I don't get it. I

> don't want to end up addicted to narcotics or anything, but is the prevailing

> attitude of the docs " it's RA, just deal with it " ?

>

> Thanks for bearing with me. By the way, from reading your posts, you sound

> like the nicest bunch of people I have ever " met " !

>

> Cary in IL

>

>

>

[Guest guest]

on 5/13/03 8:20 AM, Birdijo@... at Birdijo@... wrote:

> The rheum actually told

> me one time he " treats the swelling, not the pain " . What the heck is

> that???????!!!!!! Is that always the attitude?

I was told by the Fellow working under my rheumy, " We're concerned with the

inflammation, not the pain. " Well, duh, the inflammation causes the pain. My

rheumy would never have said that. So, no, that is not always the attitude,

thank goodness.

Sorry you're having so much pain. Sometimes it takes a while to get the

right combination of meds to control the disease. Be the squeaky wheel. Keep

complaining until you get relief.

Sue

[Guest guest]

Glad to see another nurse. I too, am an RN, recently diagnosed with RA,

but have had bilateral plantar fibromas for two years. Was a nurse on

med-surg for years, the charge nurse and unit director. Then went to

work on a cardiac unit before I had to give up floor nursing all

together. Now am working in home health, because I at least don't have

to be on my feet as much. But, the RA is beginning to take its toll,

and making this job difficult. My rheumatologist is placing me on

methotrexate on Friday. Tried me on Vioxx, Bextra, Celebrex, but I had

severe reactions to all of them. For pain, I am taking Lortab 7.5/500

two tabs QHS. Try no to take it during the day. My doctor doesn't feel

I am getting enough pain relief with this, but I won't take more due to

the sedation.

Janet from TX

Birdijo@... wrote:

> Hi All;

>

> Please excuse me if you have had the " newly diagnosed " questions a

> gazillion

> times, but here goes:

>

> I am a 39 year old nurse. I have been recently diagnosed with RA. I

> have no

> doubt that the diagnosis is correct. My rheum. started me off with

> pred,

> celebrex, and plaquenil. I got a little better briefly, then worse.

> So we

> added arava. Again I got better, actually quite a bit better, but

> within a

> month or so, worse again. So now we are about to try remicade, which

> of

> course I am very afraid of but will try. I have messed up hands,

> shoulders,

> knees, feet, neck and one hip. I am RF negative, though, which I

> think has

> made the Dr. start off my treatment kind of slowly. I finally went to

> a

> podiatrist to get new orthotics, and the xrays showed deformities in

> both

> feet, which seemed to make the rhuem decide it really was serious and

> that's

> when we discussed remicade. I have read that 15% of people with RA

> are

> seronegative.

>

> My questions center mainly on pain control, I guess. I am a

> registered nurse

> on a hospital med/surg unit. I literally run all day long, from

> around 7am

> till 4pm, give or take. I am in pain all the time. The rheum

> actually told

> me one time he " treats the swelling, not the pain " . What the heck is

> that???????!!!!!! Is that always the attitude? Some days I cannot

> work

> because my hands or knees or neck will not tolerate it. What do the

> rest of

> you do for pain control? I had a separated shoulder once, and the Dr

> gave me

> vicoprofen, which helped a lot. Now I have more pain than that on a

> daily

> basis, it even wakes me up at night, and I get celebrex? I don't get

> it. I

> don't want to end up addicted to narcotics or anything, but is the

> prevailing

> attitude of the docs " it's RA, just deal with it " ?

>

> Thanks for bearing with me. By the way, from reading your posts, you

> sound

> like the nicest bunch of people I have ever " met " !

>

> Cary in IL

>

>

>

[Guest guest]

Welcome to the group, Cary! Sorry about your RA diagnosis and that you

are having such a rough time.

Did you try methotrexate yet? Or will you be starting it with the

Remicade?

I'm afraid that many physicians don't treat pain as aggressively as they

should. We have a slogan here from discussions in the past: " It's the

pain, stupid! " If I win the lottery, I would like to make some fabulous

shirts bearing that message for the members of our group to wear on

appointment days.

Addiction to opioids for those with chronic pain who use them is fairly

rare. And most of the troublesome side-effects except for constipation

recede after a short period of use.

I would seek another rheumatologist since his comment begs the question:

If he won't treat the pain, then who will?

(in IL, too)

Re: [ ] Newbie Questions

> Hi All;

>

> Please excuse me if you have had the " newly diagnosed " questions a

gazillion

> times, but here goes:

>

> I am a 39 year old nurse. I have been recently diagnosed with RA. I

have no

> doubt that the diagnosis is correct. My rheum. started me off with

pred,

> celebrex, and plaquenil. I got a little better briefly, then worse.

So we

> added arava. Again I got better, actually quite a bit better, but

within a

> month or so, worse again. So now we are about to try remicade, which

of

> course I am very afraid of but will try. I have messed up hands,

shoulders,

> knees, feet, neck and one hip. I am RF negative, though, which I

think has

> made the Dr. start off my treatment kind of slowly. I finally went to

a

> podiatrist to get new orthotics, and the xrays showed deformities in

both

> feet, which seemed to make the rhuem decide it really was serious and

that's

> when we discussed remicade. I have read that 15% of people with RA

are

> seronegative.

>

> My questions center mainly on pain control, I guess. I am a

registered nurse

> on a hospital med/surg unit. I literally run all day long, from

around 7am

> till 4pm, give or take. I am in pain all the time. The rheum

actually told

> me one time he " treats the swelling, not the pain " . What the heck is

> that???????!!!!!! Is that always the attitude? Some days I cannot

work

> because my hands or knees or neck will not tolerate it. What do the

rest of

> you do for pain control? I had a separated shoulder once, and the Dr

gave me

> vicoprofen, which helped a lot. Now I have more pain than that on a

daily

> basis, it even wakes me up at night, and I get celebrex? I don't get

it. I

> don't want to end up addicted to narcotics or anything, but is the

prevailing

> attitude of the docs " it's RA, just deal with it " ?

>

> Thanks for bearing with me. By the way, from reading your posts, you

sound

> like the nicest bunch of people I have ever " met " !

>

> Cary in IL

[Guest guest]

Hi yall: Although I am now unable to work, I too worked in the hospital in the

laboratory, on my feet all day and up and down the halls, I don't know how many

times. I was such a light weight on pain meds, that I was hardly able to take

anything, I couldn't even drive sometimes due to them. I had a doctor prescribe

me Ultram, for the pain. It was non-narcotic and it did not effect me like the

others. I read a few articles on it and it had some downfalls as does

everything. I take it every now and then still, it really helps when I need it.

Just thought it would be something for thought....Sheri D

" Janet N. Bruns " <jnb111@...> wrote:Glad to see another nurse. I too,

am an RN, recently diagnosed with RA,

but have had bilateral plantar fibromas for two years. Was a nurse on

med-surg for years, the charge nurse and unit director. Then went to

work on a cardiac unit before I had to give up floor nursing all

together. Now am working in home health, because I at least don't have

to be on my feet as much. But, the RA is beginning to take its toll,

and making this job difficult. My rheumatologist is placing me on

methotrexate on Friday. Tried me on Vioxx, Bextra, Celebrex, but I had

severe reactions to all of them. For pain, I am taking Lortab 7.5/500

two tabs QHS. Try no to take it during the day. My doctor doesn't feel

I am getting enough pain relief with this, but I won't take more due to

the sedation.

Janet from TX

Birdijo@... wrote:

> Hi All;

>

> Please excuse me if you have had the " newly diagnosed " questions a

> gazillion

> times, but here goes:

>

> I am a 39 year old nurse. I have been recently diagnosed with RA. I

> have no

> doubt that the diagnosis is correct. My rheum. started me off with

> pred,

> celebrex, and plaquenil. I got a little better briefly, then worse.

> So we

> added arava. Again I got better, actually quite a bit better, but

> within a

> month or so, worse again. So now we are about to try remicade, which

> of

> course I am very afraid of but will try. I have messed up hands,

> shoulders,

> knees, feet, neck and one hip. I am RF negative, though, which I

> think has

> made the Dr. start off my treatment kind of slowly. I finally went to

> a

> podiatrist to get new orthotics, and the xrays showed deformities in

> both

> feet, which seemed to make the rhuem decide it really was serious and

> that's

> when we discussed remicade. I have read that 15% of people with RA

> are

> seronegative.

>

> My questions center mainly on pain control, I guess. I am a

> registered nurse

> on a hospital med/surg unit. I literally run all day long, from

> around 7am

> till 4pm, give or take. I am in pain all the time. The rheum

> actually told

> me one time he " treats the swelling, not the pain " . What the heck is

> that???????!!!!!! Is that always the attitude? Some days I cannot

> work

> because my hands or knees or neck will not tolerate it. What do the

> rest of

> you do for pain control? I had a separated shoulder once, and the Dr

> gave me

> vicoprofen, which helped a lot. Now I have more pain than that on a

> daily

> basis, it even wakes me up at night, and I get celebrex? I don't get

> it. I

> don't want to end up addicted to narcotics or anything, but is the

> prevailing

> attitude of the docs " it's RA, just deal with it " ?

>

> Thanks for bearing with me. By the way, from reading your posts, you

> sound

> like the nicest bunch of people I have ever " met " !

>

> Cary in IL

>

>

>

[Guest guest]

Thanks Sheri.

Janet

sheri duke wrote:

> Hi yall: Although I am now unable to work, I too worked in the

> hospital in the laboratory, on my feet all day and up and down the

> halls, I don't know how many times. I was such a light weight on pain

> meds, that I was hardly able to take anything, I couldn't even drive

> sometimes due to them. I had a doctor prescribe me Ultram, for the

> pain. It was non-narcotic and it did not effect me like the others. I

> read a few articles on it and it had some downfalls as does

> everything. I take it every now and then still, it really helps when I

> need it. Just thought it would be something for thought....Sheri D

>

> " Janet N. Bruns " <jnb111@...> wrote:Glad to see another

> nurse. I too, am an RN, recently diagnosed with RA,

> but have had bilateral plantar fibromas for two years. Was a nurse on

> med-surg for years, the charge nurse and unit director. Then went to

> work on a cardiac unit before I had to give up floor nursing all

> together. Now am working in home health, because I at least don't have

> to be on my feet as much. But, the RA is beginning to take its toll,

> and making this job difficult. My rheumatologist is placing me on

> methotrexate on Friday. Tried me on Vioxx, Bextra, Celebrex, but I had

> severe reactions to all of them. For pain, I am taking Lortab 7.5/500

> two tabs QHS. Try no to take it during the day. My doctor doesn't feel

> I am getting enough pain relief with this, but I won't take more due to

> the sedation.

>

> Janet from TX

>

> Birdijo@... wrote:

>

> > Hi All;

> >

> > Please excuse me if you have had the " newly diagnosed " questions a

> > gazillion

> > times, but here goes:

> >

> > I am a 39 year old nurse. I have been recently diagnosed with RA. I

> > have no

> > doubt that the diagnosis is correct. My rheum. started me off with

> > pred,

> > celebrex, and plaquenil. I got a little better briefly, then worse.

> > So we

> > added arava. Again I got better, actually quite a bit better, but

> > within a

> > month or so, worse again. So now we are about to try remicade, which

> > of

> > course I am very afraid of but will try. I have messed up hands,

> > shoulders,

> > knees, feet, neck and one hip. I am RF negative, though, which I

> > think has

> > made the Dr. start off my treatment kind of slowly. I finally went to

> > a

> > podiatrist to get new orthotics, and the xrays showed deformities in

> > both

> > feet, which seemed to make the rhuem decide it really was serious and

> > that's

> > when we discussed remicade. I have read that 15% of people with RA

> > are

> > seronegative.

> >

> > My questions center mainly on pain control, I guess. I am a

> > registered nurse

> > on a hospital med/surg unit. I literally run all day long, from

> > around 7am

> > till 4pm, give or take. I am in pain all the time. The rheum

> > actually told

> > me one time he " treats the swelling, not the pain " . What the heck is

> > that???????!!!!!! Is that always the attitude? Some days I cannot

> > work

> > because my hands or knees or neck will not tolerate it. What do the

> > rest of

> > you do for pain control? I had a separated shoulder once, and the Dr

> > gave me

> > vicoprofen, which helped a lot. Now I have more pain than that on a

> > daily

> > basis, it even wakes me up at night, and I get celebrex? I don't get

> > it. I

> > don't want to end up addicted to narcotics or anything, but is the

> > prevailing

> > attitude of the docs " it's RA, just deal with it " ?

> >

> > Thanks for bearing with me. By the way, from reading your posts, you

> > sound

> > like the nicest bunch of people I have ever " met " !

> >

> > Cary in IL

> >

> >

> >

[Guest guest]

--- In , " Judy " <temair@a...>

wrote:

> Hi. I have a few questions, if you don't mind. What is butter oil?

Do you

> get the same effect from CLO and a pat of butter? If I buy the

wheat itself

> and grind it myself (working on that, I already broke the food processor

> trying it), will it still cause the gluten problems? I saw 100% stone

> ground whole wheat flour at the grocery store (King Arthur brand)

and it was

> the same price as buying the whole wheat. Is it just as healthy? I'm

> trying to wean myself off of white flour, but I love to bake. Thanks.

>

> Judy

Hi Judy,

I'm no gluten expert (that title goes to Heidi - the glutenator, as

she is known ), but I do know that even if you grind the wheat

yourself you still need to soak it or give it a long sourdough

fermentation to get rid of the anti-nutrients. I, like you, used to

love baking (cookies, muffins, bread, pizza etc.), but I've come to

realize, with the help of the nice people here on this board (thanks!

) that grains are not really where it's at when you're looking to

eat a nutrient dense diet - even if they are whole grains that have

been properly treated. That's not to say that you can't eat them, but

many people have major problems with them reagrdless of how they are

treated. I really do hope you can wean yourself off the white flour.

That's a hard addiction to kick, but you'll get there. Just take it

a step at a time. I slowly but surely have weaned myself off baked

goods, and I'm happy to say I don't use any sweeteners (not even

natural ones - a former weakness of mine). But, take it a step at a

time, and first try to eliminate the white flour completely.

Regarding your cod liver oil and butter question, I'd like to know the

answer to that one as well.

Ciao,

Dawn

>

>

>

[Guest guest]

I forgot to mention before that fresh ground flour is better than

packaged flour because flour goes rancid fairly quickly after it has

been ground. If you do decide to get the packaged flour, keep it in

your fridge in an air tight container.

Dawn

[Guest guest]

>? I saw 100% stone

>> ground whole wheat flour at the grocery store (King Arthur brand)

>and it was

>> the same price as buying the whole wheat. Is it just as healthy? I'm

>> trying to wean myself off of white flour, but I love to bake. Thanks.

>>

>> Judy

Well, I'll save you the anti-gluten speech, but really, I love to bake

too! We do have good baked goods at our house, but we just

don't use wheat flour. Sorghum is an easy alternative ... I get that

pre-ground from www.twinvalleymills.com. It is really difficult to

get anti-nutrients from whole grain flours though ... even soaking

etc. doesn't get rid of all of them. So lately we've been leaning

more toward using the starches (potato starch or potato flour,

rice flour, tapioca) mixed with other stuff (eggs, or some of the

folks here add cheese, butter, kefir) for nutrients.

For nutrient content, vegies and meats, eggs and cheese are

where it is at. None of the grains really measure up ... their

only advantage, from the point of view of the rise of civilization,

is that you can store them up in big granaries for years, which

makes it easier to feed armies and such. I try to build our

meals around meat and vegies, and use bread as a condiment

(or an edible napkin for holding raw garlic and olive oil, or lox

and onions, good stuff like that!).

>

Heidi Jean

[Guest guest]

Butter Oil, aka Ghee, is super clarified butter. Dairy butter

is cooked without stirring in a saucepan at a low boil for 30

minutes to 2 hrs, depending on your recipe, to evaporate

the water content and precipitate out the milk solids. After

cooling slightly, the clear yellow oil is skimmed and filtered

through several layers of cheesecloth or a piece of clean

linen. Butter Oil does not need to be refrigerated because

the water that can causes rancidity has been removed.

I made a quart of Butter Oil just the other day. We've been

frying and cooking with it and using it in some delicious

kefir pies.

Darrell

[Guest guest]

I have been reading The Heart Revolution by Dr. Kilmer S. McCully. It

is a book concerned mainly with homocysteine, an amino acid, and how

to keep it in the normal range for a healthy heart. Anyway he talks

about the boiling of butter(ghee)and how it becomes unhealthy during

this processing. It does taste okay, but it is not a whole food after

the boiling. It is changed into an oxy-cholesterol(not a hydrogenated

trans fat)which will cause blockage in the blood circulatory system

and bring on heart disease.

It would be far safer to use clarified butter. There is a recipe for

clarified butter in NT. I have made it, and although it does not have

the self life of ghee and has a higher water content, it works just

fine for cooking at medium temperatures.

It believe it is safer to fry with coconut oil or lard. IMO

If anyone else has read this book it would be intereting to discuss

it here. I am almost finished with it.

He recommended NT, but it is obvious from what he wrote that he

never read anything in it. Fallon was even miss-spelled. I was rather

amused.

Sheila

--- In , " Darrell " <lazlo75501@y...>

wrote:

> Butter Oil, aka Ghee, is super clarified butter. Dairy butter

> is cooked without stirring in a saucepan at a low boil for 30

> minutes to 2 hrs, depending on your recipe, to evaporate

> the water content and precipitate out the milk solids. After

> cooling slightly, the clear yellow oil is skimmed and filtered

> through several layers of cheesecloth or a piece of clean

> linen. Butter Oil does not need to be refrigerated because

> the water that can causes rancidity has been removed.

> I made a quart of Butter Oil just the other day. We've been

> frying and cooking with it and using it in some delicious

> kefir pies.

>

> Darrell

[Guest guest]

:Message: 55987 From: h2ocolor1937 Received: Fri Oct 01, 2004 11:55 PM

:Subject: Re: Newbie questions

:

:I have been reading The Heart Revolution by Dr. Kilmer S. McCully.

: Anyway he talks

:about the boiling of butter(ghee)and how it becomes unhealthy during

:this processing. It is changed into an oxy-cholesterol(not a hydrogenated

:trans fat)which will cause blockage in the blood circulatory system

:and bring on heart disease.

:

:Sheila

Sheila,

In my reading about homemade butter oil I have seen statements indicating

that much of the cholesterol is removed once the casein milk solids are

discarded after being precipitated out. I am not sure if this is true, but maybe

someone else in the group can definitively say one way or the other.

I have also read that dietary cholesterol, to some degree (?), is utilized by

beneficial bacteria in the gut. Perhaps that would help mitigate a portion

of any cholesterol not precipitated and filtered out after the gentle boiling.

It is probably a good idea to only use organic butter from spring and fall

pasture fed cows to maximize the antioxidant vitamins, carotenes and

minerals.

Darrell

[Guest guest]

I've been finding out that ghee is AWESOME for cooking up pancakes,

and I used it to fry my husband some potatoes last night, and they

were soooo crunchy and good.

Dawn

--- In , " Darrell " <lazlo75501@y...>

wrote:

> Butter Oil, aka Ghee, is super clarified butter. Dairy butter

> is cooked without stirring in a saucepan at a low boil for 30

> minutes to 2 hrs, depending on your recipe, to evaporate

> the water content and precipitate out the milk solids. After

> cooling slightly, the clear yellow oil is skimmed and filtered

> through several layers of cheesecloth or a piece of clean

> linen. Butter Oil does not need to be refrigerated because

> the water that can causes rancidity has been removed.

> I made a quart of Butter Oil just the other day. We've been

> frying and cooking with it and using it in some delicious

> kefir pies.

>

> Darrell

[Guest guest]

You just rained on my ghee parade

Dawn

> > Butter Oil, aka Ghee, is super clarified butter. Dairy butter

> > is cooked without stirring in a saucepan at a low boil for 30

> > minutes to 2 hrs, depending on your recipe, to evaporate

> > the water content and precipitate out the milk solids. After

> > cooling slightly, the clear yellow oil is skimmed and filtered

> > through several layers of cheesecloth or a piece of clean

> > linen. Butter Oil does not need to be refrigerated because

> > the water that can causes rancidity has been removed.

> > I made a quart of Butter Oil just the other day. We've been

> > frying and cooking with it and using it in some delicious

> > kefir pies.

> >

> > Darrell

[Guest guest]

Hi Heidi,

>So lately we've been leaning

> more toward using the starches (potato starch or potato flour,

> rice flour, tapioca) mixed with other stuff

Here's a dumb question, but when you use rice flour, do you soak it

first? Also, I have a grain grinder, so would it be best to grind my own?

Another dumb question: what exactly is tapioca? I guess I can Google

that one, but I thought I would just ask here first. My Indian foods

store sells it, and I was thinking of purchasing it to grind at home.

Does it also need to be soaked?

Lastly, have you every tried using Black gram dhal flour (ulundu

flour)? It is supposedly made with mung beans from what I learned on

the Internet yesterday. They sell that too at my Indian supply store.

I think the Indians use it to make dosas (a type of fermented pancake).

Dawn

[Guest guest]

At 11:04 AM 10/2/04 -0000, you wrote:

>Lastly, have you every tried using Black gram dhal flour (ulundu

>flour)? It is supposedly made with mung beans from what I learned on

>the Internet yesterday. They sell that too at my Indian supply store.

> I think the Indians use it to make dosas (a type of fermented pancake).

I thought dhal was lentils?

MFJ

Everything connects. The Universe is not THAT chaotic. Beauty can

still be found in the most amazing places.

[Guest guest]

I could be wrong.

Dawn

> >Lastly, have you every tried using Black gram dhal flour (ulundu

> >flour)? It is supposedly made with mung beans from what I learned on

> >the Internet yesterday. They sell that too at my Indian supply store.

> > I think the Indians use it to make dosas (a type of fermented

pancake).

>

>

> I thought dhal was lentils?

>

>

>

> MFJ

> Everything connects. The Universe is not THAT chaotic. Beauty can

> still be found in the most amazing places.

[Guest guest]

Are butter oil and ghee the same thing? I was not under

this impression, but I could be wrong! I thought the

magic butter oil of WAP fame was not heat treated,

and that was part of what made it so medicinal. I don't

see how heating and clarifying butter would improve

its nutrition - seems more like this would take some away.

Aven

> Butter Oil, aka Ghee, is super clarified butter. Dairy butter

> is cooked without stirring in a saucepan at a low boil for 30

> minutes to 2 hrs, depending on your recipe, to evaporate

> the water content and precipitate out the milk solids. After

> cooling slightly, the clear yellow oil is skimmed and filtered

> through several layers of cheesecloth or a piece of clean

> linen. Butter Oil does not need to be refrigerated because

> the water that can causes rancidity has been removed.

> I made a quart of Butter Oil just the other day. We've been

> frying and cooking with it and using it in some delicious

> kefir pies.

>

> Darrell

[Guest guest]

Hi Dawn,

I'm sorry to send a thunderstrom to your parade. I take no pleasure

in blowing up happy cooking discoveries. Sometimes it is hard to

accept the chemical facts of science.

I have been using butter at a higher than wise heat and will have to

stop that practice too. Some things are so hard to change when it

comes to foods. Sad but true. At least there are other tasty

options. If you can find a pig farm and make some lard it is amazing

for frying. Better tasting than ghee too. Of course there is always

the expeller pressed Tropcial Traditions coconut oil that Heidi uses.

I am going to try it.

I hope you more cheered up now?

Sheila

In , " dawnciano " <dawnciano@y...>

wrote:

> You just rained on my ghee parade

>

> Dawn

>

>

> > > Butter Oil, aka Ghee, is super clarified butter. Dairy butter

> > > is cooked without stirring in a saucepan at a low boil for 30

> > > minutes to 2 hrs, depending on your recipe, to evaporate

> > > the water content and precipitate out the milk solids. After

> > > cooling slightly, the clear yellow oil is skimmed and filtered

> > > through several layers of cheesecloth or a piece of clean

> > > linen. Butter Oil does not need to be refrigerated because

> > > the water that can causes rancidity has been removed.

> > > I made a quart of Butter Oil just the other day. We've been

> > > frying and cooking with it and using it in some delicious

> > > kefir pies.

> > >

> > > Darrell