Question

[Guest guest]

Hi

I was working on going there and I was a candidate. But my heart enlarged and I would not have lived through the stem cell transplant. Let me tell you that it may stop the disease but not the cause. It can still come back again if you don't kill the mycoplasma. Or if the heavy chemo and killing off your immune system doesn't. People who have done this already the disease stops, but it doesn't reverse. Your body stays just the way it is when you stop the disease. Hard as a brick. And thick skinned. I was dying in Feb, 1999 they gave me 2 weeks to live. I had and enlarged heart with fluid surrounding it, disfigured hard as a brick, BP of over 200, and a multitude of problems. I was DX with systemic scleroderma, systemic lupus, RA, polimiositis, with raynards. I now look like me and my skin is soft and I am doing great. I was so advanced I have damage to my muscles and bowels and esophagus and ect. I TAKE PILLS FOR ESOPHAGUS AND EXERCISE THE MUSCLES AND HAVE BEEN PUCKERING UP AS IT DAMAGED MY SPHINCTER MUSCLE AND i AM BOWEL INCONTINENT BUT HAVE IMPROVED. Sorry about the large writing I am not very good typist and I look at the keys and missed what I was doing here. If you do the transplant your body will stay the same and you will have collagen through your body. I went on the AP in Feb 1999 and they said I was probably to late and they treated me very aggressively. My skin is soft and I look great and feel great. My BP is normal without meds. Please reconsider this and email if you want. I wish you blessings and pray you listen to me. You will go through hell with the stem cell and it takes 3 months if they accept you for the whole procedure and it is not as you think and that can kill you. You only need heavy IV's and minocin it will work quickly if you do it. If you are not on the IV's and only minocin it isn't as efficient. I started reversing in 30 days. I had 6 IV's a week for 5 weeks, then 3 IV's a week for about 3 months and then 2 a week for about 3 months and then one and so on. The More advanced you are the more aggressive you need to be with the treatments. Minocin on the day off. You have the IV's with the scleroderma for it to be real effective quickly. I wish you the best and I will pray for you. Judy/Florida

[Guest guest]

Janet- how old is your son? When my son left Infants and Toddlers and

started in the school system, he was evaluated and they had no problems

with me being in the room. I have heard alot of others in this group say

they are not allowed in the speech session or allowed in the classroom,

but my son's speech teacher is fine with me being there. Actually, if

she wasn't, I probably wouldn't have my son there. My son gets very

upset that he can't get people to understand him. On top of that,

doesn't enjoy the " boring " speech classes, so if I left, causing him more

stress, he would waste the entire 1/2 hour session crying. I believe he

has enough pressure on him just trying to be understood, he doesn't need

anything added, if it can be avoided. I know others disagree, but you

have to raise your child the way you feel is right and not how others

believe you should. You know your child best.

On Wed, 23 May 2001 23:41:28 EDT timari3@... writes:

> Hi Group,

> My son's evaluation is scheduled for Tuesday and they said I can not

> be in

> the room with him during the evaluation. Is that typical? I

> thought my

> input would be essential considering his lack of expressive

> speech... Any

> comments would be helpful.

> Janet

[Guest guest]

I have always been with my daughter throughout any evaluations she

has had. For one thing I'm sure she wouldn't cooperate without me in

there as she will scream if I just walk away from her (staying within

sight) to cross the ball field to talk to my son. There have been

parts of one where they ask me to sit behind her and we assure her

I'm right there behind her and then I sit there quietly. But if she

gets worried she knows she can just turn around and I'm still sitting

there. They also tend to ask me afterward did I see things she did

do at home but wouldn't for them or things she did there that I

haven't seen her do at home. I also feel my input is very

important. She has quite a vocabulary in sign language but will not

sign in public, so without my input much would go unnoticed.

Hannah, mom to LeAnne (32mths, apraxia, hypotonia, SI) and

(4.5)

>My son's evaluation is scheduled for Tuesday and they said I can not

>be in the room with him during the evaluation. Is that typical? I

>thought my input would be essential considering his lack of

>expressive speech... Any comments would be helpful.

>Janet

[Guest guest]

I have to say that I agree with .

> Janet- how old is your son? When my son left Infants and Toddlers and

> started in the school system, he was evaluated and they had no problems

> with me being in the room. I have heard alot of others in this group say

> they are not allowed in the speech session or allowed in the classroom,

> but my son's speech teacher is fine with me being there. Actually, if

> she wasn't, I probably wouldn't have my son there. My son gets very

> upset that he can't get people to understand him.

[Guest guest]

I'd say Speech therapist is best. It's not technically a medical question.

Speech pathologists are trained to diagnose speech issues, but often

recommend a developmental pediatrician at some point down the line.

[Guest guest]

> Does anyone know how to contact the moderator of this list?

Thanks--

>

Dear ,

This list is unmoderated. I could go into a long detailed

description of what " moderated " might mean, but I won't

(unless you want me to--just ask).

The list was started by Lyn Redwood, and she is the list

owner, which means something very specific to .

Again, I could describe that in more detail if you want.

You can reach Lyn, the list owner, if you want to, at:

-owner

Lyn occassionally asks me to handle TECHNICAL issues or

questions that are sent to her at that address. I am

*not* a moderator of this list, and I have been strongly

in support of having the list be UNmoderated. I know a

bit more about computers than Lyn, and have occassionally

managed to be helpful.

I am on some moderated lists and can discuss the benefits

and drawbacks. (Yikes, I'll have to look up a post I wrote

on that topic a while back...) But really, that is a whole

'nother complex discussion. Right now I thought I'd just

answer your question about the list moderator.

I realize it is rather irritating to have both Mike's

commercials and everyone else's responses taking up a

lot of air time, but I'm sure this is a temporary problem.

In the meantime, please carry on with discussing autism,

mercury poisoning, chelation, and other relevant topics

as best you can. And the " delete " key is useful.

best regards,

Moria

[Guest guest]

Hi,Lori!

Hooray for your son and you! This is great! As you know, the

enzymes helped my son greatly even when still gfcf. I am certain the

enzymes broke down foods we didn't even know were a problem for my

son.

>

> >>

> >>Devin,

> >>

> >>You suggested that I switch to the ZymePrime because my son was

> >>experiencing really loose stools with the Peptizyde. We are

gfcf, but he

> >>has trouble digesting proteins and I was concerned with some of

the

> >>products, (such as tofutti cheese products which may have trace

amounts

> >>in them). At the meeting when I met you, you seemed to say the

the

> >>Peptizyde was the enzyme I needed, but now it seems that this

enzyme is

> >>the most useful when going off the gfcf diet. Is this correct?

> >>Is there is enough Protease in the ZymePrime to help with the

protein

> >>digestion and trace gluten and casein?

> >>

> >>By the way, stools have gotten better since changing to

ZymePrime

> >>and he is still eating well. Actually, he doing REALLY WELL

lately,

> >>focused, communicative, and just more " with it " and the enzymes

are

> >>really the only new thing that we have done in the past couple of

months.

> >>

> >>Lori

[Guest guest]

It may be a question of potency. Maybe the high-protease potency of

Peptizyde is more than needed; Zyme Prime has 4 proteases in lesser

amounts than in Peptizyde, but the sum total may be sufficient for

those who remain GfCf.

It's a lot of trial and error, but there are just too many individual

differences between these kids to make one standard recommendation.

> >

> > >>

> > >>Devin,

> > >>

> > >>You suggested that I switch to the ZymePrime because my son was

> > >>experiencing really loose stools with the Peptizyde. We are

> gfcf, but he

> > >>has trouble digesting proteins and I was concerned with some of

> the

> > >>products, (such as tofutti cheese products which may have trace

> amounts

> > >>in them). At the meeting when I met you, you seemed to say the

> the

> > >>Peptizyde was the enzyme I needed, but now it seems that this

> enzyme is

> > >>the most useful when going off the gfcf diet. Is this correct?

> > >>Is there is enough Protease in the ZymePrime to help with the

> protein

> > >>digestion and trace gluten and casein?

> > >>

> > >>By the way, stools have gotten better since changing to

> ZymePrime

> > >>and he is still eating well. Actually, he doing REALLY WELL

> lately,

> > >>focused, communicative, and just more " with it " and the enzymes

> are

> > >>really the only new thing that we have done in the past couple

of

> months.

> > >>

> > >>Lori

[Guest guest]

Janine,

Many have reported very loose stools the first few weeks on the HNI

enzymes, yet, others report firm stools for the first time ever. My

son had diarrhea for about ten days. Once every week or two, one of

his stools will again be very loose. I think it is important to look

at the overall picture here. Have any other behaviors changed?

What other enzymes were your son on and did you see any behavioral

progress?

> Can someone tell me if they have seen very very loose bm's when

starting the enzymes. My son has been on the enzymes for 2 weeks

now. Not with every meal and slow. Did 1/2 cap of ea to start and

now up to 1 cap but only with largest meal. What I am seeing is very

inconsistent bm's. (every 3-4 days) and very very loose. Thick but

liquid. He has been on other enzymes for a year and this kind of

pattern has not been seen.

> Janine/NY

>

>

>

>

>

[Guest guest]

You don't say what enzymes you have just started, or what the " other "

enzymes were. I am using the Peptizyde and the Zyme Prime. I don't

know if my experience here will be at all relevant to your question,

but here it is.

I have three of my kids on these enzymes. For my autistic son, he

gets enzymes three meals each day, and he is allowed only water

between meals. For my other two kids, I had been allowing rice milk

substitute between meals, but I noticed that one developed his typical

" bad food " skin rash again, and both had strange bms. When I removed

the substitute between meals, the rash and bms went away. Now the one

has smooth skin again, and both have normal bms.

I don't know whether I can explain this very well, but my experience

with my kids is, once the enzymes started, any other foods that they

were " sort of " tolerating because they were " used to it " , but their

bodies really did not like it, they suddenly did not tolerate it at

all. I know they tolerate white rice but not brown rice, and the rice

milk substitute the first ingredient is " brown rice syrup solids " , and

while they were eating/drinking stuff everyday which was mildly

reactive but not too much, it seemed okay, but now with the enzymes

the " mild " stuff is suddenly the only stuff they are having a problem

with, so now it is seen by their bodies as " very reactive " .

I have NO idea whether or not that made any sense.

Anyway I would recommend you give small amounts of enzymes with 2-3

meals per day now, then build up to one capsule each meal. If your

child has similar reactions as my children, you should see things get

better as you are giving enzymes with ALL reactive foods.

Well I hope that helped. If not, just ignore it LOL

Dana

> Can someone tell me if they have seen very very loose bm's when

starting the enzymes. My son has been on the enzymes for 2 weeks now.

Not with every meal and slow. Did 1/2 cap of ea to start and now up

to 1 cap but only with largest meal. What I am seeing is very

inconsistent bm's. (every 3-4 days) and very very loose. Thick but

liquid. He has been on other enzymes for a year and this kind of

pattern has not been seen.

> Janine/NY

>

>

>

>

>

[Guest guest]

If I was seeing loose stools daily that would be one thing, but what I am seeing

is very loose thick stool every few days. He is not going daily and that

concerns me.

I've not seen any other changes in him since starting. Keep in mind, he does

not have any behavior problems. He eats well, he learns in school, he craves

attention and interaction. He is in a 40 hr week intensive program. What I'm

looking for here is speech/language because other than that, I would think he

would be considered dev delay.

Janine

[ ] Re: Question

Janine,

Many have reported very loose stools the first few weeks on the HNI

enzymes, yet, others report firm stools for the first time ever. My

son had diarrhea for about ten days. Once every week or two, one of

his stools will again be very loose. I think it is important to look

at the overall picture here. Have any other behaviors changed?

What other enzymes were your son on and did you see any behavioral

progress?

> Can someone tell me if they have seen very very loose bm's when

starting the enzymes. My son has been on the enzymes for 2 weeks

now. Not with every meal and slow. Did 1/2 cap of ea to start and

now up to 1 cap but only with largest meal. What I am seeing is very

inconsistent bm's. (every 3-4 days) and very very loose. Thick but

liquid. He has been on other enzymes for a year and this kind of

pattern has not been seen.

> Janine/NY

>

>

>

>

>

[Guest guest]

What I have started are both the Houston enzymes. Prior to starting them he was

on two diff kinds. Ness Chew and Chiro Zyme Pancreatic. I discontinued these to

try Devin's. He is no longer gfcf but was for a year. There was no major

improvements due to this diet, however I stayed with it. When he started the

other enzymes, his stool became regular. He was always constipated before. So

basically, I started enzymes, started diet. With that I had more regular bm's.

Since I have switched to these enzymes, I'm seeing an irregular pattern. For a

year he has almost always gone daily. Only skipping a day once and a while. This

is not what I am seeing now. Janine

[ ] Re: Question

You don't say what enzymes you have just started, or what the " other "

enzymes were. I am using the Peptizyde and the Zyme Prime. I don't

know if my experience here will be at all relevant to your question,

but here it is.

I have three of my kids on these enzymes. For my autistic son, he

gets enzymes three meals each day, and he is allowed only water

between meals. For my other two kids, I had been allowing rice milk

substitute between meals, but I noticed that one developed his typical

" bad food " skin rash again, and both had strange bms. When I removed

the substitute between meals, the rash and bms went away. Now the one

has smooth skin again, and both have normal bms.

I don't know whether I can explain this very well, but my experience

with my kids is, once the enzymes started, any other foods that they

were " sort of " tolerating because they were " used to it " , but their

bodies really did not like it, they suddenly did not tolerate it at

all. I know they tolerate white rice but not brown rice, and the rice

milk substitute the first ingredient is " brown rice syrup solids " , and

while they were eating/drinking stuff everyday which was mildly

reactive but not too much, it seemed okay, but now with the enzymes

the " mild " stuff is suddenly the only stuff they are having a problem

with, so now it is seen by their bodies as " very reactive " .

I have NO idea whether or not that made any sense.

Anyway I would recommend you give small amounts of enzymes with 2-3

meals per day now, then build up to one capsule each meal. If your

child has similar reactions as my children, you should see things get

better as you are giving enzymes with ALL reactive foods.

Well I hope that helped. If not, just ignore it LOL

Dana

> Can someone tell me if they have seen very very loose bm's when

starting the enzymes. My son has been on the enzymes for 2 weeks now.

Not with every meal and slow. Did 1/2 cap of ea to start and now up

to 1 cap but only with largest meal. What I am seeing is very

inconsistent bm's. (every 3-4 days) and very very loose. Thick but

liquid. He has been on other enzymes for a year and this kind of

pattern has not been seen.

> Janine/NY

>

>

>

>

>

[Guest guest]

I think this is out of my area! I would e-mail Devin or post on this

board to him specifically. I do know some " neurologically typical "

kids do not have bowel movements every day. I wonder if under normal

conditions, your son would be one of those kids and he is gradually

moving to a different, but normal-for-him schedule (?).

As for the speech/language development, many have reported

improvement in that area after starting the enzymes. Let us know how

things progress.

> > Can someone tell me if they have seen very very loose bm's when

> starting the enzymes. My son has been on the enzymes for 2 weeks

> now. Not with every meal and slow. Did 1/2 cap of ea to start

and

> now up to 1 cap but only with largest meal. What I am seeing is

very

> inconsistent bm's. (every 3-4 days) and very very loose. Thick

but

> liquid. He has been on other enzymes for a year and this kind

of

> pattern has not been seen.

> > Janine/NY

> >

> >

> >

> >

> >

[Guest guest]

Oh I will. Thank you .

;

As for the speech/language development, many have reported

improvement in that area after starting the enzymes. Let us know how

things progress.

[Guest guest]

if I put HN-Prime Zyme on a cracker mixed in with jam before school will it

be ok by lunch time at school or will the whole thing dissolve?

karen

[Guest guest]

Hi Ana :

I had a similar reaction after taking vioxx for maybe 6 to 8 months. I got really bad tendonitis and was getting much worse when I finally dedcided it had to be the vioxx. I stopped it and a few days later, Donna in Ottawa posted a warning that she had a similar response - thus confirming what I was thinking. So, proceed with caution and look for another NSAID. Regards, Dean.

rheumatic Question

Group,

I haven't posted in a while - I've had such good months this past summer up until now - that of course, I read everything but didn't have much to ask.......UNTIL now......I've been on daily Vioxx for about a year and a half, alternating between 25mgs and 12.5 mgs .......About 10 days ago, I noticed that by the end of the day, my ankles were swelling very visibly -also developed a rash or hives (can't tell for sure), around my waist. AND I have also gained about 15 pounds in the last 3 months, without having any reason to.......Has anybody else experienced these symptoms.

I read the very small print on the leaflet I get when I buy Vioxx, and those symptoms are one of the possible side effects - but I never had this before.

I was taking Minocin for 1.5 years, but was taken off by my doc when I developed a reaction to it - so I've been on 250mgs Zythromax 3x per week for 6 months now.

Any and all input will be greatly appreciated.

Ana in AlaskaTo unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

I sent a list to a few years back which she put on her website. I

didn't keep it :-(

>

>

> > Recently some one of you sent the breakdown of abbreviation terms that

> > MD's use when writing a prescription

[Guest guest]

> Recently some one of you sent the breakdown of abbreviation terms that

> MD's use when writing a prescription

Hi , that wasn't me but I just wanted to tell you you can look up

medical terms at rxlist.com, look for the link on the main page for their

Taber's Medical Dictionary search feature. HTH Liz G.

[Guest guest]

> Recently some one of you sent the breakdown of abbreviation terms

that

> MD's use when writing a prescription - i.e.., once a day, three

times a

> day, etc. Could the author of that please re-submit again. I share

my

> office with my three children and somehow, someway it got thrown

out.

> (?!?!)

>

>

I posted this and Ron later put it in the Files section of the

web site. You can find it there listed under:(Common Latin Rx Terms)

Latin Abbreviation Meaning

ante cibum ac before meals

bis in die bid twice a day

gutta gt drop

hora somni hs at bedtime

oculus dexter od right eye

oculus sinister os left eye

per os po by mouth

post cibum pc after meals

pro re nata prn as needed

quaque 3 hora q 3 h every 3 hours

quaque die qd every day

quater in die qid 4 times a day

ter in die tid 3 times a day

Mark

RA 4/98

[Guest guest]

I am not sure. I am so new to this. I hope someone can answer your

questions. I hope you get this message. I am not sure if you got my other

messages or not. I hope Tucker will be ok. God bless. Sincerely,

[Guest guest]

,

I am no expert by far, but my laymen's guess is that they are talking about TMJ- or the fact that the jaw can get out of alignment because the back may have pushed it a certain way, causing it to be off a little. JUST A GUESS> On another note: I have also read that plagio untreated MAY cause vision problems. I came across this cool website of the brain, and they explain the occipital lobe is responsible for vision- any damage could cause vision impairment- I wonder if this is how they link plagio with vision problems?

Check it out: The Brain

[Guest guest]

Yes that would qualify as functional inpairment; an inability to chew

properly and the pain associated with TMJ. Also another one often

mentioned is possible future vision problems if left uncorrected.

> this kinda goes back to my post DENIED...what excactly do they mean

by functional impairment?my dr referall states that if the asymmetry

is allowed to continue, we may, in the furture, be treating

temporamandibul problmes associated with this...does that qualify as

functional impairment??

> brenda

> mom of tucker

[Guest guest]

:

Sounds like they are saying it's cosmetic issues only. From your Drs

statement, plagio COULD cause phys. problems in the future. There

are many disputes over this in the medical field. Tough question, of

course we all pray that plagio won't cause ANY problem to our baby

for one second.

Debbie Abby's mom DOCGrad

MI

>

> > this kinda goes back to my post DENIED...what excactly do they

mean

> by functional impairment?my dr referall states that if the

asymmetry

> is allowed to continue, we may, in the furture, be treating

> temporamandibul problmes associated with this...does that qualify

as

> functional impairment??

> > brenda

> > mom of tucker

[Guest guest]

Hi Ana,

They could be Rheumatoid nodules. They usually show up on bony surfaces. I have a few. The ones under my heels and big toes cause me pain. I plan to get them removed. My podiatrist said they will probably come back. I was told that they were an indication of a severe case of RA. What they are all about...I'm not sure. I've heard a few explanations. One that I remember off hand are that they are clumps of misplaced collagen, but it seems that most doctors don't really know why we get them. I hope someone will post who does have a good explanation.

Take care,

Kimmie

rheumatic Question

Group,

I've been lurking for the most part for the past 6 to 8months - having no major flares or pain, I've just been reading and commiserating with those in pain. However, I've developed a symptom that puzzles and concerns me. I have been diagnosed with RA for 3 years now, been on AP for 2.5 years, went through bad flares for a long time, but I've been feeling so good that I almost felt normal again. EXCEPT, for these raised, painful bumps, almost like bruises on my right shin, which are tender and warm to the touch, and the ankle of that leg keeps swelling quite a bit on a daily basis. I went to see a GP for a bad cold a few days ago, and after sitting there and listening to him extol the virtues of traditional treatment for RA, he told me that these nodules are a symptom of RA, and that he could give me steroids for them if I wanted. I said no, thank you and left. BTW, he would not listen to me when I attempted to explain AP, called my doctor an irresponsible quack, and suggested I see a "board certified" rheumatologist. I wasn't too predisposed to believe him about the nodules, so I'm placing the question to those of you who may know about them.

I appreciate any and all responses.

Thank and God bless,

Ana in AlaskaTo unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

Ana,

I've had a marble size hard bump of the just to the side of knee and was told it was a nodule. It is hard like a marble. Doesn't hurt except if I bang it.

Bev

Hi Ana,

They could be Rheumatoid nodules. They usually show up on bony surfaces. I have a few. The ones under my heels and big toes cause me pain. I plan to get them removed. My podiatrist said they will probably come back. I was told that they were an indication of a severe case of RA. What they are all about...I'm not sure. I've heard a few explanations. One that I remember off hand are that they are clumps of misplaced collagen, but it seems that most doctors don't really know why we get them. I hope someone will post who does have a good explanation.

Take care,

Kimmie