Re: Digest Number 49

[Guest guest]

In a message dated 1/3/99 3:28:38 AM Central Standard Time,

onelist writes:

<< But I've

just developed 10 extremely painful ulcers on the roof of my mouth.

I'm calling my rheumy tomorrow. Anyone out there with a similar

experience on Imuran? >>

The mouth sores may be due to the methotrexate--a lot of our Rheumies

perscribe folic acid daily for this--it's a B vitamin.

Imuran did not give me mouth sores, but it created bone marrow suppression,

leading me to a super-low red cell count. Just walking out the door to the

car would wear me out. I needed to have two units of blood transfused and I

felt better--along with getting me off the Imuran.

I think the mouth sores can be easily corrected but talk to your Rheumy.

[Guest guest]

I've had trouble with mouth sores when my mtx was increased to 7 pills

per week, that's 17.5 mg. I just went back down to 6 pills at the time

and it went away. I also experienced more hair loss at 7 pills. I seem

to be doing well on 5 pills right now luckily. I also take 5mg. of folic

acid per day which really helps with the side effects.

" And the beat goes on. "

>

> In a message dated 1/3/99 3:28:38 AM Central Standard Time,

> onelist writes:

>

> << But I've

> just developed 10 extremely painful ulcers on the roof of my mouth.

> I'm calling my rheumy tomorrow. Anyone out there with a similar

> experience on Imuran? >>

[Guest guest]

Marie, There is no question as to the dx. Enzymes have been elevated

since, and PCR positive in Dec. 1998 as well. My question is about

when, not whether I was infected. Arlene

[Guest guest]

Allan wrote:

To make a long story short. We both slipped a bit last night

at our cast party for the Easter play and had some greasy

pizza (man alive it was good). She had one slice with a glass

of water and a hand full of potato chips. She also had a cup

of coffee with breakfast. Last night at 10 pm she started to

have an attack, by Midnight it was so bad that she had so take

the pain meds twice to get through the night. By morning she

seems sore and weak but OK.

Is there anything that can be done to stop this kind of attack

early on before it escalates into such a major thing?

We don't want to do something stupid just because of the pain

involved (though it is tempting).

We had heard that Marshmallow leave tea might be a good thing

to try at the onset but that once it gets going you just

basicly have to ride the thing out. We did not have any of

this to try last night so we just prayed and stayed up

most of the night.

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

Allan,

I thought your wife was getting ready to go the gallbladder flush.

What is she waiting for? Time to stop sufferring!

[Guest guest]

>

> Allan,

>

> I thought your wife was getting ready to go the gallbladder flush.

> What is she waiting for? Time to stop sufferring!

>

>

Thats what I was thinking too. But if I remember right, Allan, you are

now doing the bowel cleanse, aren`t you, expecting to fludh stones when

finishing?

[Guest guest]

<< Smelling pretty? I use that cheap pink fabric softener that you buy off

the

bottom shelf at the grocery store. It comes in a gallon bottle. I use this

in

the DRYER. I keep the cheap pink stuff in a large open mouth container

with a

SPONGE in it. I squeeze out the sponge and throw it in the dryer. This

pink

stuff will last for MONTHS!!!! >>

Don't you run into the problem of " spotting " on your clothes? I know if the

fabric softener doesn't disperse well enough it leaves spots and then I have

to re-wash them......

nne

[Guest guest]

In a message dated 12/31/99 11:45:51 AM Central Standard Time,

onelist writes:

<< Just wanted to pass this tip on (I " invented " it for rebatching, yes,

I'm sure I'm not the first, but...) I took the removable crock from my

big crock pot and it fit perfectly into, but does not touch the bottom,

my big stainless pot. I put enough water in the bottom of the stainless

pot and my rebatch went smoothly! Blownin' my own horn just a bit, huh?

>>

Just a thought but wouldn't using the whole cooker work as well?

Jah'net

[Guest guest]

In a message dated 12/31/99 11:45:51 AM Central Standard Time,

onelist writes:

<< I make liquid laundry soap using KOH. I haven't been successful using

NaOH. >>

Your post explains some of the questions I had about making the soap. It was

the jelly that was giving me the most problem. I ended up adding more water

till I had used over 2 gals. I keep pouring out some and placing it in other

containers to dilute later. I washed my towels and blankets in it today and

it worked well. Some of the towels had heavyduty stains from people using

them as mops, so those things will need extra stain cleaning but overall I

was pleased with the cleaning power of my soap. I used a commercial fabric

softener because I forgot to bring the vinegar with me but the clothes had

such a nice soft feel and a delicate smell. I didn't sneeze or cough orgasp

for air like I normally do when I wash clothes so I think that this may be

the solution for me.

However, what is KOH? is that the chemical name or is that a product?

Thanks,

Jah'net

[Guest guest]

<< Has anyone had experience with olive oil discolouring their soap?

>>

[Guest guest]

, I use ultramarine violet to get a nice mauve/violet color. I've been

mixing a bit of it in some of the warmed fats/oils first, and then

incorporating it back into the pot of fats/oils, before adding the

lye/water. I used to add at trace but don't anymore. I used 2T for a 12 lb.

batch. A perfect plum, lavender color, not too dark. HTH

Deborah Baker

http://inalathersoaps.com

:::Message: 8

::: Date: Fri, 31 Dec 1999 09:44:08 -0800

::: From: " Beccari " <lorenab@...>

:::Subject: colourants

:::

:::Has anyone used cosmetic grade pigments such as oxide to colour soaps. I

prefer to use spices

:::and herbs to colour soaps, but sometimes it's hard to get the right

colour. Also, can anyone :::recommend what I could use to colour a lavender

soap bar. I'm looking for a mauve/violet effect.

:::

:::thx

:::

:::Toronto

[Guest guest]

I personally think this is a great idea. Thanks. You have been helpful all

along. Harriett

>From: Hepatitis Conelist

>Reply-Hepatitis Conelist

>Hepatitis Conelist

>Subject: Digest Number 49

>Date: 16 Feb 2000 10:59:15 -0000

>

>

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

[Guest guest]

I personally think this is a great idea. Thanks. You have been helpful all

along. Harriett

>From: Hepatitis Conelist

>Reply-Hepatitis Conelist

>Hepatitis Conelist

>Subject: Digest Number 49

>Date: 16 Feb 2000 10:59:15 -0000

>

>

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

[Guest guest]

Okay, guys, time for a little bragging........

Last night, participated in our school's kindergarten program......they

were on Old Mac's Farm, and was a sheep........he stayed the WHOLE

TIME in his place on the rafters they had on the side of the stage until it

was his group of animals' turn on stage to do their skit. They did a " lost

sheep " routine, and was assigned a " buddy " to hold his hand and make

sure he didn't take off!

Well, he performed beautifully and got a standing ovation! DH was recording

it and when saw him, he REALLY hammed it up! We could not believe he

could hold up for 45 min.....the length of the program! He danced, sang, and

did all the routines just perfectly.....just keeping that sheep's costume on

(with a hat yet!) was a feat in itself!! We couldn't get him to wear a

costume for Halloween!!

Explain this to me......why was he SO GOOD at this and can't sit still for 5

min. in school and at home??? Also, he is so tactile defensive...how in the

heck did they get that sheep's outfit on him without him putting up a fight?

Does really have issues or does he just have a control thing with his

parents???

I'm beginning to think it's not all AD/HD.....it's just choices, and

CHOSE to participate THIS TIME....he loves to act and dance, so maybe he's

found his niche??

I would love comments about this....it has the whole family in awe.........

(Mom to child star )

[Guest guest]

,

Congrats to you and child star !

Sorry we missed you in Vegas.

Maybe next time you come out, we can hook up.

S

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[Guest guest]

In a message dated 5/24/00 3:46:07 AM Eastern Daylight Time,

hyperthyroidismegroups writes:

<< If, as I have been told, the chemical in 'brown' soft drinks suppresses

the immune system, then it would make your body more susceptible to infection.

>>

A sincere question: Since our immune systems are super vigilant, turning on

our own tissue, wouldn't something which suppresses the immune system be

desirable?

[Guest guest]

>As for the gluten-free flours, I can't really

>eat them either - it's more of a digestive

>problem than so much a gluten

>intollerance.

Yeah, same here.

>meats stay in your stomach for days, and

>end up fermenting, and they're VERY,

>VERY hard to break down.

I don't think that is true. Carnivores actually have very short

digestive tracts.

Anyway, I never have a problem with meat.

>I've basically come to the conclusion that I

>can't eat anything that ferments, is a

>mold, culture, or stays in my stomach for

>too long.

Yeam I've noticed that, too. Pickled things also don't agree with me.

I also make fruit smoothies

I was making a lot of these for breakfast, but the bananas were

undigestable for me.

>I'm also working on lowering my intake of

>coffee as it's highly acidic and may be

>contributing to my over-senitivities.

I don't drink coffee or tea.

Lori

[Guest guest]

Hi ,

I feel so dumb and I know you told us but is Reese in the brace or Cheyenne? Also I am curious at what age did you brace him? What was his curve at? That is great that you had good luck with the brace. You are very lucky! I hope it gets even better!

Crista

[Guest guest]

Christa!

Congratulations and good luck!!

Isbella's Mom:

My son is 2 1/2, we 1st noticed the curve at 6 mo.s old. The MRI showed no

cause so it is idopathic. He was sedated for the MRI but he had already had

a fairly minor surgery for an unrelated condition where he was fully sedated

with the tube in the throat and all so I felt better that it would not be

that heavy a sedation. Besides that it was really not a major thing, and

well worth the info Is there a curve to your daughter's back or is it

only the neck thing?? I still feel so new to all the terms I still don't

know my son's RVAD. My close friend had a daughter with torticollis I

think. It didn't improve so she was in a head gear for a few months last

year, but all is well now. I hear the exercises are usually enough...but

did they start you on that?????

My son is not in a cast, but a brace and has had excellent results. I guess

that is really not the norm, but I will just be happy if he doesn't need

surgery. Good luck to you and it sounds like everyone is giving you great

advice here on the list. I am so glad to have a network of parents going

through this too.

Good Luck!

in Lexington...MI

mom to Reese and Cheyenne

[Guest guest]

,

Have you asked your doctor about his RVAD? That is, if youre

interested in finding it out. (I was afraid to ask in fear it may not

be what I wanted to hear.) Once I decided to ask for it, it was like

pulling teeth to get it.

Im excited for you and little Reese. I smile whenever I think

about him! Such a cutie!! If we all just stick together we can

conquer the world!!!!

[Guest guest]

Kay,

I was DX almost a year ago (11 May) and I still have severe leg pain. I

think I am the exception to the rule. When first put on Gleevec the pain was so

severe I would sit in the floor and fight the pain waiting on the 4 hours to be

up so I could take more pain meds. Eventually the constant pain stopped and

now the pain depends on the amount and type of physical activity I perform. I

know your pain all to well. I take percocet when regular OTC meds dont work

and I eat 500mg of magnisium a day. I suggest you talk to your ONC and work

on possible solutions. Many times it's just hit and miss, trial and error

until you find what works for you. Sorry for your hurt and hope you find

something soon to help!

Smile,

Herring

[Guest guest]

wrote: " The simple fact that I was making was that mercury

poisoning is not autism. Why? Becasue its not. Autism is autism, mercury

poisoning is mercury poisoning.

People with an ASD can get mercury poisoning but when you treat it, you

are not treating autism you are treating mercury poisoning. "

I'll bite too, but I'm willing to entertain 's primary point (if

not the rhetoric).

As Mark Blaxill has so well articulated in one of his incredibly

well-researched and intelligent presentations, we're on the verge of a

major paradigm shift:

From... autism as a diagnostic label placed on a constellation of

observed behaviors that are genetic in origin, and that is neither

medically testable nor treatable, according to the medical establishment

that assigns diagnostic labels.

To... autism as a medical condition, accompanied by well-researched and

testable biomedical symptoms (dysfunctions of the immune, metabolic,

gastrointestinal, and neurologic systems), that also manifests itself in

the constellation of behaviors known as autism (thus the diagnosis).

Maybe a semantics shift IS appropriate to accompany the paradigm shift.

I know I've wondered in the past whether we should be calling our kids

" mercury-poisoned, " since it is true, since our kids have most if not

all of the biomedical conditions associated with mercury poisoning, and

since it is medically testable and treatable.

Perhaps that same medical establishment that assigns these diagnostic

labels failed to properly diagnose our children when they labeled their

behaviors as " ASD. " I think this is plausible... Who among them can

recognize mercury-poisoning when its behavioral manifestations look like

autism? And even if they knew enough about mercury poisoning to

recognize it in our kids, there is the resistence against testing for

and diagnosing mercury-poisoning because it opens the pandora's box of

where the mercury exposure came from... thimerosal.

I'm reminded of the therapist's post yesterday who said today's

post-epidemic children are different than the pre-epidemic children and

adults of 20 years ago. ARE the post-epidemic kids substantially

different? Or could it be that ASDs never really existed at all, and

autism has ALWAYS been mercury poisoning. Maybe it's time to shed the

nebulous label of behaviors known as autism... A label invented by

psychiatrists in the era of Freudianism and the refridgerator-mother

theory, with absolutely no physical/biomedical criteria to back it up.

Think of it... With a " simple " change in semantics, our kids will now

have a " real " medical condition that is testable, treatable, and paid

for by insurance!!!!!!! Their physical ailments are no longer rejected

by the medical community, they are paramount, and the focus shifts to

making them healthy again.

Any one else have thoughts about a diagnostic paradigm-shift?

As for my own mercury-poisoned son with autistic behaviors, a rose by

any other name would smell as sweet...

Amy