Re: New seeking advice

[Guest guest]

Here is the dosing schedule. I have allowed small infractions with the

enzymes and didn't notice anything really negative that stood out. It was

when I let him have pizza and ice cream in Fresno (2 hours from here at a

friend's for the day) and I left our enzymes in the other vehicle. He raged

for about an hour that night and was SO irritable the whole next day. His

fit wasn't anything we had seen in over a year. I think it was a true sign

that the enzymes are really working for him and that he can't tolerate

casein at all.

http://www.houstonni.com/faq/articles/dosing-information.html

_____

From:

[mailto: ] On Behalf Of elaine boby

Sent: Monday, July 17, 2006 9:11 AM

Subject: new seeking advice

Hello there,

I am lloking for some advice or info to get me started. I have

DeFelice's book and have been reading it, andsifting through all the info on

the site enzymestuff. I'm still a little overwhelmed.

My son is four years old and has been gfcf for about two years. He has been

taking various supplements for this time as well following the DAN treatment

protocol for the most part. He has yeast like we all do and probably other

gut bugs as well as constipation and abdominal pains. We do give him houston

enzymes AFP and No phenol with his other supps in the mornig and evening,

and when we first started treatment we gave him the chewables with meals. I

am wondering if this wasnt a big part of his initial progress and since we

lost track and they fell by the wayside I am going to try to make them a

part of his food intake again. I ordered more houstons chewables.

I would love to hear how much or how often (the ins and outs) he should get

them, any other things I should know about. Are many of the people on this

list gfcf with the enzymes or how many have been able to bend out of the

diet. I am hopeful about this of course, but would not be willing to rush

anything. I am thinking I will make the enzymes part of his routine, His

father and I are also going to start taking the Zyme Primes, see how he does

with soy, them maybe dairy, and finally gluten if all goes well.

Thanks,

Elaine

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

How low will we go? Check out Messenger's low PC-to-Phone call rates.

[Guest guest]

>>He has yeast like we all do and probably other gut bugs as well as

constipation and abdominal pains.

Yeast and constipation info

http://www.danasview.net/yeast.htm

http://www.danasview.net/constip.htm

> I would love to hear how much or how often (the ins and outs) he

should get them, any other things I should know about.

When my son needed enzymes, I had to give them with everything he ate

and drank.

>>Are many of the people on this list gfcf with the enzymes or how

many have been able to bend out of the diet.

I left gfcf with enzymes, and my son noticeably improved.

>>His father and I are also going to start taking the Zyme Primes, see

how he does with soy, them maybe dairy, and finally gluten if all goes

well.

It is good to only add one food at a time.

Dana

[Guest guest]

Sorry to hear this, Anabelle.

Are you going to see a new rheumatologist or the same one you saw before?

Not an MD

On Thu, Sep 10, 2009 at 11:41 AM, tempestuous3sea <yittleone@...> wrote:

> Hello,

>

> I'm 36 and I have had achy joints since I was a teenager.  Just put them off

to bursitis.  Then, when I was 19, I was told I couldn't donate blood plasma

because I had a marker for lupus in my blood tests.  I freaked and took the

letter to my doctor and he reassured me that the marker did not equal actually

having lupus.  I tripped on with my own life.

>

> My shoulders froze a couple of years later and a couple of years after that I

developed raynaud's phenomenon, a thoroughly frustrating disorder.  My shoulders

froze up a couple of more times through my 20s but what became truly alarming

was literally a pain in the butt.

>

> I had practised yoga for nearly 10 years.  Making sure that I was gentle on my

shoulders during outbreaks.  Then, 5 years ago, I developed a fire in both hips

and my right knee.  That fire came and went for a couple of years then 3 years

it stayed for good.  In around that time I developed a nodule on my larynx that

had to be shrunk with steroids prior to surgery and voila!  all the pain when

away in my joints (I wasn't expecting that).  Finally the on fire joints was

frustrating enough I went to see my doctor.

>

> And got nowhere.  Fast.

>

> Then my jaw dislocated...permanently. Arthritis so bad in my right jaw the

bone just wore away.  The left is well on its way too.

>

> I sought out help from a chiropractor for the hip pain and he discovered that

a joint in my lower back (which had troubled me since I was a teenager) was very

arthritic.

>

> Back I went to the doctor and I was referred to rheumatologist, who sent me

home with a prescription for Vioxx, glucosamine and a admonition to stop

yoga...forever.

>

> The vioxx didn't help and neither did the glucosamine so I stopped taking

them.

>

> I was demoralized.  I started icing my hips and knee every day for hours just

to stop the pain.

>

> I recently went on Naproxen which has really helped with the worst parts of

the inflammation.  Although I can still feel the inflammation on days when it is

really bad.  But my blood pressure has sky rocketed on that medication.

>

> I have a lot of pain in my knee with any kind of jumping action and I have to

walk out my right hip in the morning and after sitting for any great length of

time.

>

> I'm being re-referred to the rheumatologist BUT my family doctor made it sound

as though I had a far fetched chance of actually seeing him/her.

>

> All tests on my RH factor have turned out negative.

>

> I joke that I should put myself on the knee/hip replacement waiting list now

but really this is not funny, it is quite terrifying.  I am a pretty active

person.  I love walking, hiking, swimming, biking.  But these activities are

becoming more and more painful.

>

> Oh, and now I have a joint in my neck that is snap, snap, snapping.  That and

I can only stand for 1/2 hour before my lower back spasms and I have to do a

forward bend to loosen it up. Which looks strange when I am in business social

situations.  Oh and my index fingers are aching now too.

>

> I am extremely puzzled as to why it would be far fetched for me to even get in

to see the rheumatologist.

>

>

> belle

[Guest guest]

belle, hi, my name is Renae, I go by Nae. Good to meet you. I'm

relatively new here & don't post a lot unless a post comes along that

touches me such as yours. A brief history to maybe understand where I coming

from. I've had RA since I was 13, dxd at 16. I'm now 66. I struggled just as

you did as a teenager. All they could do was give me steroid shots & aspirin

b/c most days I couldn't get my hands above my shoulders to get dressed.

Plus my knees would swell so much they would have to be drained. I played no

sports or any activities in high school. So I sorta considered myself an

outcast b/c I had something wrong with me that no one could do anything

with. At 16, they finally found a doc that nailed it as RA & that I probably

was born with it. It was genetically passed from my father. For years I

rocked along taking aspirin so much it almost destroyed my stomach. They

didn't have rheumies per cey back then. I married, had 2 children, was in

remission one time for 5 years. 5 years of no pain. Later after my 3rd

child, my entire body froze. Every joint. Almost paralyzed. They found a

rheumy, he put me on prednisone & gold shots. Was on those for 21 years.

They stopped working, went on methotrexate, pred. & folic acid w/pain meds

for break through pain. 22 years later, I am now on Enbrel. So I've said all

that to say this, you really should find a good rheumy, EVEN THOUGH your

other tests are negative. I know tons of other people that can show you what

RA has done to them but they have negative results. Don't let that throw

you. Not knowing where you live or what insurance you have, your

circumstances,etc, I cannot predict what the outcome might be. But with

everything you've described, your pcp doesn't know what he's talking about

(sorry!) unless he has to refer you & he knows that person. Can you go on

line. find a rheumy in your area, do some checking on him - I think another

member here, , has some websites where you can check a doc out, then see

if you can see him.

belle, I don't know you from Adam <g> but I do know this disease, inside

& out. You need a good, good rheumy. You've had symptoms for far too many

years - even though you may not have had bad flares, or at least didn't know

what was causing the pain - to not see a good doctor. You need to be on

DMARD like methotrexate along with prednisone or even plaquneil. I hope I've

not offended you in any way by being so direct & aggressive. I just know

what horrors (sorry, another scary word) you might face if you leave

unattended and not get the proper meds. I wish you all the very best & if I

can help in any way, I'm right here! :-) Nae

[ ] New seeking advice

> Hello,

>

> I'm 36 and I have had achy joints since I was a teenager. Just put them

> off to bursitis. Then, when I was 19, I was told I couldn't donate blood

> plasma because I had a marker for lupus in my blood tests. I freaked and

> took the letter to my doctor and he reassured me that the marker did not

> equal actually having lupus. I tripped on with my own life.

>

> My shoulders froze a couple of years later and a couple of years after

> that I developed raynaud's phenomenon, a thoroughly frustrating disorder.

> My shoulders froze up a couple of more times through my 20s but what

> became truly alarming was literally a pain in the butt.

>

> I had practised yoga for nearly 10 years. Making sure that I was gentle

> on my shoulders during outbreaks. Then, 5 years ago, I developed a fire

> in both hips and my right knee. That fire came and went for a couple of

> years then 3 years it stayed for good. In around that time I developed a

> nodule on my larynx that had to be shrunk with steroids prior to surgery

> and voila! all the pain when away in my joints (I wasn't expecting that).

> Finally the on fire joints was frustrating enough I went to see my doctor.

>

> And got nowhere. Fast.

>

> Then my jaw dislocated...permanently. Arthritis so bad in my right jaw the

> bone just wore away. The left is well on its way too.

>

> I sought out help from a chiropractor for the hip pain and he discovered

> that a joint in my lower back (which had troubled me since I was a

> teenager) was very arthritic.

>

> Back I went to the doctor and I was referred to rheumatologist, who sent

> me home with a prescription for Vioxx, glucosamine and a admonition to

> stop yoga...forever.

>

> The vioxx didn't help and neither did the glucosamine so I stopped taking

> them.

>

> I was demoralized. I started icing my hips and knee every day for hours

> just to stop the pain.

>

> I recently went on Naproxen which has really helped with the worst parts

> of the inflammation. Although I can still feel the inflammation on days

> when it is really bad. But my blood pressure has sky rocketed on that

> medication.

>

> I have a lot of pain in my knee with any kind of jumping action and I have

> to walk out my right hip in the morning and after sitting for any great

> length of time.

>

> I'm being re-referred to the rheumatologist BUT my family doctor made it

> sound as though I had a far fetched chance of actually seeing him/her.

>

> All tests on my RH factor have turned out negative.

>

> I joke that I should put myself on the knee/hip replacement waiting list

> now but really this is not funny, it is quite terrifying. I am a pretty

> active person. I love walking, hiking, swimming, biking. But these

> activities are becoming more and more painful.

>

> Oh, and now I have a joint in my neck that is snap, snap, snapping. That

> and I can only stand for 1/2 hour before my lower back spasms and I have

> to do a forward bend to loosen it up. Which looks strange when I am in

> business social situations. Oh and my index fingers are aching now too.

>

> I am extremely puzzled as to why it would be far fetched for me to even

> get in to see the rheumatologist.

>

>

> belle

>

>

>

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

>

>

[Guest guest]

>

> Sorry to hear this, Anabelle.

>

> Are you going to see a new rheumatologist or the same one you saw before?

>

>

>

> Not an MD

I'm not sure. I'm not even sure I'll get to see one. Apparently I have to have

an x-ray to be sent to the rheumatologist prior to my referral. The joint I'm

most interested in right now is my left hip, so I got my GP to requisition it.

But now I'm thinking that if this the " qualifying " x-ray...damn I needed to get

them to re x-ray my jaw. BUT I don't really need that joint x-rayed again as I

know it's toast. Darn it but it was a dentist that took those x-rays.

As far as I know we only have two or three rheumatologists in the city.

I'm in Canada, so cost is not an issue.

The thing that I am most frustrated with is that all the facts you hear about

arthritis is that you need to be diagnosed quick. I've been in and in and in to

the doctor only to be blown off time and again.

When my jaw dislocated and I was at the doctor I asked him why no one took me

seriously and he told me that I didn't present like someone who was in a lot of

pain. Arrg. I broke 5 ribs when I was 13 and didn't tell anyone and I was in

quite a bit of pain!

Thanks for the welcome.

belle

[Guest guest]

>

> belle, hi, my name is Renae, I go by Nae. Good to meet you. I'm

> relatively new here & don't post a lot unless a post comes along that

> touches me such as yours. A brief history to maybe understand where I coming

> from. I've had RA since I was 13, dxd at 16. I'm now 66. I struggled just as

> you did as a teenager. All they could do was give me steroid shots & aspirin

> b/c most days I couldn't get my hands above my shoulders to get dressed.

> Plus my knees would swell so much they would have to be drained. I played no

> sports or any activities in high school. So I sorta considered myself an

> outcast b/c I had something wrong with me that no one could do anything

> with. At 16, they finally found a doc that nailed it as RA & that I probably

> was born with it. It was genetically passed from my father. For years I

> rocked along taking aspirin so much it almost destroyed my stomach. They

> didn't have rheumies per cey back then. I married, had 2 children, was in

> remission one time for 5 years. 5 years of no pain. Later after my 3rd

> child, my entire body froze. Every joint. Almost paralyzed. They found a

> rheumy, he put me on prednisone & gold shots. Was on those for 21 years.

> They stopped working, went on methotrexate, pred. & folic acid w/pain meds

> for break through pain. 22 years later, I am now on Enbrel. So I've said all

> that to say this, you really should find a good rheumy, EVEN THOUGH your

> other tests are negative. I know tons of other people that can show you what

> RA has done to them but they have negative results. Don't let that throw

> you. Not knowing where you live or what insurance you have, your

> circumstances,etc, I cannot predict what the outcome might be. But with

> everything you've described, your pcp doesn't know what he's talking about

> (sorry!) unless he has to refer you & he knows that person. Can you go on

> line. find a rheumy in your area, do some checking on him - I think another

> member here, , has some websites where you can check a doc out, then see

> if you can see him.

>

> belle, I don't know you from Adam <g> but I do know this disease, inside

> & out. You need a good, good rheumy. You've had symptoms for far too many

> years - even though you may not have had bad flares, or at least didn't know

> what was causing the pain - to not see a good doctor. You need to be on

> DMARD like methotrexate along with prednisone or even plaquneil. I hope I've

> not offended you in any way by being so direct & aggressive. I just know

> what horrors (sorry, another scary word) you might face if you leave

> unattended and not get the proper meds. I wish you all the very best & if I

> can help in any way, I'm right here! :-) Nae

Thank you for the supportive post Nae.

What I am dealing with, I guess, is a lack of doctors in my city. My family

doctor believes I have some form of arthritis...well he has to believe now

because other doctors have found 3 different arthritic joints.

I desperately want to stay active but one of the issues I face is that when I

have a day one my feet: walking, biking etc. My knees and my hips are in so

much pain that I can hardly sleep at night. This is on top of 1000mg of

Naproxen every day. The Naproxen really helps in being able to be active.

That week I was on the prednisone was nice because within two days I was pain

free. I would not consider being on it full time because of all the side

effects. But it was nice to not experience pain all day long.

I'm only 36...I can't imagine just what shape my hips and knees will be in in 10

years. Not to mention the vertebrae that are slowly deteriorating.

I'm very concerned that I won't be referred to the rheumatologist and be blown

off again.

belle

[Guest guest]

I hope you will be seen by a rheumatologist, belle. Could the

dentist send the x-rays to you or the rheumatologist?

Not an MD

On Thu, Sep 10, 2009 at 7:23 PM, tempestuous3sea <yittleone@...> wrote:

>

> I'm not sure.  I'm not even sure I'll get to see one.  Apparently I have to

have an x-ray to be sent to the rheumatologist prior to my referral.  The joint

I'm most interested in right now is my left hip, so I got my GP to requisition

it.  But now I'm thinking that if this the " qualifying " x-ray...damn I needed to

get them to re x-ray my jaw.  BUT I don't really need that joint x-rayed again

as I know it's toast.  Darn it but it was a dentist that took those x-rays.

>

> As far as I know we only have two or three rheumatologists in the city.

>

> I'm in Canada, so cost is not an issue.

>

> The thing that I am most frustrated with is that all the facts you hear about

arthritis is that you need to be diagnosed quick.  I've been in and in and in to

the doctor only to be blown off time and again.

>

> When my jaw dislocated and I was at the doctor I asked him why no one took me

seriously and he told me that I didn't present like someone who was in a lot of

pain.  Arrg.  I broke 5 ribs when I was 13 and didn't tell anyone and I was in

quite a bit of pain!

>

> Thanks for the welcome.

>

> belle

>

[Guest guest]

>

> I hope you will be seen by a rheumatologist, belle. Could the

> dentist send the x-rays to you or the rheumatologist?

>

>

>

> Not an MD

>

I did try that once a few years ago when my jaw was simply arthritic but had not

yet dislocated. Unfortunately, the x-ray was too small to really see anything.

What would be nice would be to get all these professionals in one room. It

seems that the guys that are finding the arthritic joints are the ones that have

no impact on how I get treated by a rheumatologist.

belle

[Guest guest]

belle, I read in another post that you are in Canada. Where are you? I

have a friend w/RA that lives there, she may be able to help get you through

the maze of getting a referral. But could you family doctor take an x-ray of

the joints needed? And not knowing how everything works there....... Could

your family doctor get you started on RA meds then you can worry about

getting the x-ray. Let me know about asking my friend. She's on another list

but I'm sure she would be glad to have me pass the info on. I know it's

difficult & the pred. is both a miracle & a curse But I've been on it for

years. Hope this helps in some way. Nae

> Thank you for the supportive post Nae.

>

> What I am dealing with, I guess, is a lack of doctors in my city. My

> family doctor believes I have some form of arthritis...well he has to

> believe now because other doctors have found 3 different arthritic joints.

>

> I desperately want to stay active but one of the issues I face is that

> when I have a day one my feet: walking, biking etc. My knees and my hips

> are in so much pain that I can hardly sleep at night. This is on top of

> 1000mg of Naproxen every day. The Naproxen really helps in being able to

> be active.

>

> That week I was on the prednisone was nice because within two days I was

> pain free. I would not consider being on it full time because of all the

> side effects. But it was nice to not experience pain all day long.

>

> I'm only 36...I can't imagine just what shape my hips and knees will be in

> in 10 years. Not to mention the vertebrae that are slowly deteriorating.

>

> I'm very concerned that I won't be referred to the rheumatologist and be

> blown off again.

>

> belle

>

>

>

[Guest guest]

I'm in Calgary, Alberta.

My GP was the one who got me started on the Naproxen. A year ago, when the pain

was not going away I told him that I didn't want to be sent back to the

rheumatologist because I found him to be dismissive and condescending. I have

been trying to sort out whether it is important to see a rheumatologist or

whether I just need to rely on my GP.

The thing that concerns me about my GP is that he repeats again and again how

arthritis is a progressive disorder and that there is no cure. While this is

very true I don't need to hear it when I report that I am in a lot of pain and

I'm looking for some respite from the pain. I think he says this because he

feels bad for not believing me 4 years ago when I first started reporting

problems.

I really want to know just what type of arthritis I have. Then I can try to

wrap my mind around just what I need to do and what I can expect.

Please feel free to pass my e-mail on to your friend. I'd appreciate any wisdom

she may be able to impart.

Thank you :-)

belle

>

> belle, I read in another post that you are in Canada. Where are you? I

> have a friend w/RA that lives there, she may be able to help get you through

> the maze of getting a referral. But could you family doctor take an x-ray of

> the joints needed? And not knowing how everything works there....... Could

> your family doctor get you started on RA meds then you can worry about

> getting the x-ray. Let me know about asking my friend. She's on another list

> but I'm sure she would be glad to have me pass the info on. I know it's

> difficult & the pred. is both a miracle & a curse But I've been on it for

> years. Hope this helps in some way. Nae

>

> > Thank you for the supportive post Nae.

> >

> > What I am dealing with, I guess, is a lack of doctors in my city. My

> > family doctor believes I have some form of arthritis...well he has to

> > believe now because other doctors have found 3 different arthritic joints.

> >

> > I desperately want to stay active but one of the issues I face is that

> > when I have a day one my feet: walking, biking etc. My knees and my hips

> > are in so much pain that I can hardly sleep at night. This is on top of

> > 1000mg of Naproxen every day. The Naproxen really helps in being able to

> > be active.

> >

> > That week I was on the prednisone was nice because within two days I was

> > pain free. I would not consider being on it full time because of all the

> > side effects. But it was nice to not experience pain all day long.

> >

> > I'm only 36...I can't imagine just what shape my hips and knees will be in

> > in 10 years. Not to mention the vertebrae that are slowly deteriorating.

> >

> > I'm very concerned that I won't be referred to the rheumatologist and be

> > blown off again.

> >

> > belle

> >

> >

> >

>

[Guest guest]

belle, this is just my opinion, but I believe a rheumy is the best way

to go. This is all they do. They know arthritis better than anything. I hate

to hear that that particular doc was so dismissive. He may feel that way b/c

your test were negative. Actually, no, no doc should be that way. Maybe you

should ask him why he chooses to be that way. You said you didn't think

there was but 3 in your city. That's a large city to have so few

rheumys.Have you checked out some of the others? If your test turn up

negative, it may be difficult to ever find out just what kind you have.

There are people that have had it forever & their test are still negative.

Some of the time, the docs have to rely on their physical exam & how you

explain the pain & your feelings to him. 'Looking' like you aren't in pain

doesn't mean you aren't. Seems that needs discussing. I'll pass your addy on

& maybe there will be some help along the way. You are in a dilemma & need

some help out. Don't give up!! Nae

[ ] Re: New seeking advice

> I'm in Calgary, Alberta.

>

> My GP was the one who got me started on the Naproxen. A year ago, when

> the pain was not going away I told him that I didn't want to be sent back

> to the rheumatologist because I found him to be dismissive and

> condescending. I have been trying to sort out whether it is important to

> see a rheumatologist or whether I just need to rely on my GP.

>

> The thing that concerns me about my GP is that he repeats again and again

> how arthritis is a progressive disorder and that there is no cure. While

> this is very true I don't need to hear it when I report that I am in a lot

> of pain and I'm looking for some respite from the pain. I think he says

> this because he feels bad for not believing me 4 years ago when I first

> started reporting problems.

>

> I really want to know just what type of arthritis I have. Then I can try

> to wrap my mind around just what I need to do and what I can expect.

>

> Please feel free to pass my e-mail on to your friend. I'd appreciate any

> wisdom she may be able to impart.

>

> Thank you :-)

>

> belle