Questions

November 26, 1998

Dear ,

> How could I be in touch with Dr.Chieu or some other reumatologist?

Dr. Chiu is a member of this group. Just put 'Dr. Chiu' in the title and

he'll respond. There are often too many messages for Dr. Chiu and the other

doctors to plough through for questions embedded in the text.

> I'd like to ask if will I be able to take Maalox for my stomach along

with

> antibiotics, what time of the day should I take them, with or without

> food?

You might want to try aloe vera juice, 2 fluid ozs three or four times a

day for your stomach.

> Also about the diet I read about this non dairy diet, and no sugar. What

> could I have instead of sugar cause is really difficult for me to live

without

> sweets!

A problem many of the group share Giving up dairy is dependent on the

individual. Many people do better if they don't take dairy and for some it

makes no difference at all. Try taking no dairy for a couple of weeks and

see if it makes any difference to you. Milk often seems to cause a problem.

Sweets are a different matter because excess sugar depletes your immune

system. Don't try to do it all at once - just gradually cut down on the

amount of sugary foods you take. The good news is that once you have given

up most of the sugary stuff, you won't want it. Really You can get a

sweetener called Stevia in health food shops which is unbelievably sweet

and is good for you, so can be used as a sugar substitute.

> Anyway, I want to visit one more doctor I know in Greece and if he wiil

not

> accept the therapy I'm starting alone, always depending on your help.

We are always here. Let us know how we can help.

Chris.

____________________________________________________________________

March 6, 1999

Mark, Dr. Kempf bought the practice from Dr. Oliver who took it over

reluctantly when Dr. Brown died. Dr. Oliver did not believe in the

therapy, but he agreed to see Dr. Brown's patients because there was no

one else available. My appointment was in July 1989 with Dr. Brown, but

he died a few months earlier and I saw Cap Oliver. He only gave me the

therapy because I asked for it.

Kempf did not buy the practice to take over where Dr. Brown left off.

Dr. and Dr. Brown worked together for 37 years. Both Dr. and

Dr. Coker-Vann (Dr. Brown's research director when he died) can tell you

all you want to know about this therapy.

Ethel

> HOLMES, MARK T. wrote:

>

> I find it interesting all the comments on taking minocycline on only

> MWF. I realize this is the protocol and that I should disobey my

> doctor (a doctor from the list, I might add) and take it in that

> manner. However, I have not done so and have had success (although not

> total remission by any means) and so far have not had any reactions to

> it (not meaning I won't if I have to take it for a period of years).

> When I mention this concern to my doctor, he sort of chuckles and

> says that he knows Dr. personally and that that he is a

> microbiologist, not a doctor seeing patients every day. As a doctor

> who treats rheumatoid patients every day, he feels he knows what works

> better than those back in the lab. I should note here, that this is

> coming from a doctor who took over Dr. Brown's practice. Now what do

> I say to this person? I try to bring up all the stuff mentioned by

> the group, but he just sort of smiles and says yes, he knows all of

> that and he's heard it a thousand times, but it just doesn't jive

> with what he experiences as a day to day doctor dealing all day with

> rheumatoid patients. Now I sort of feel I have to give some credence

> to that - after all , I don't see rheumatoid patients all day and

> really the only ones I see are you guys . Yet, I'm conflicted,

> because in the back of my mind, I remember all those thousands of

> anectodal stories of Dr. Brown's patients.

>

> What would you suggest? Write him a letter perhaps, outlining all the

> arguments and asking him to respond in writing? (That might or might

> not have results with him - I get along with him ok, but that may be

> tempered by the fact that I am improving somewhat and that makes him

> happier than seeing someone who is going downhill). Just ignore him

> and go to MWF by myself? I wish I had the " faith " all of you seem to

> exhibit. I'm afraid I was born a skeptic and always want to have

> things backed up with facts - sounds like I would have been a good

> " conventional " rheumie, huh? Yet at the same time, I am sure there is

> something to Chinese medicine, Indian medicine, herbs, MSM, DMSO,

> etc,etc. I sometimes wonder if the herbs don't work as well for me

> as they seem to do for others, simply because I am a skeptic? I

> wonder if just believing the stuff works is what makes the difference

> for so many of you (as in the " power of the mind " ).

>

> I'm not sure what sort of an answer I'm trying to get here. If any of

> you feel the same way, it would probably be comforting to hear that,

> although of course it won't solve my problem. Because I have had

> success with every day, I get a bit nervous about dropping the dosage

> (although the money savings would sure be nice!) and worry that I may

> start going the other direction which I sure don't want.

>

> Thanks for listening to all my troubles. ) . You guys are the

> best.

>

> Mark

>

> RA 4/98 A/P 7/98

> Mino (100mg/2x/daily)

> http://members.tripod.com/~Mark_Holmes

> RA Chat: http://members.tripod.com/~Mark_Holmes/RA/ra.html

> mholmes@... ICQ # 18123139

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

>

March 6, 1999

In article <004d01be672f$0d7d6c80$434462d8@oemcomputer>, HOLMES, MARK T.

<MHOLMES@...> writes

> I'm not sure what sort of an answer I'm trying to get here. If any

> of you feel the same way, it would probably be comforting to hear

> that, although of course it won't solve my problem. Because I have

> had success with every day, I get a bit nervous about dropping the

> dosage (although the money savings would sure be nice!) and worry

> that I may start going the other direction which I sure don't want.

There's no arguing with success.

-------

Regards, Dr Graham Chiu

Prospective Internet Observational Study in Arthritis

Home Page http://www.compkarori.com/arthritis/

Contribute at http://www.compkarori.com/arthritis/contrib.htm

Data Entry at http://www.compkarori.com/cgi-local/piosa.cgi

March 6, 1999

A man of few words.....but right to the point.

Donna

Ottawa, Canada

Scleroderma, Raynaud's 01/95, AP 10/97

(My Story) www.compmore.net/~donray

rheumatic Re: Questions

>From: Dr Graham Chiu <anon_emouse@...>

>

>In article <004d01be672f$0d7d6c80$434462d8@oemcomputer>, HOLMES, MARK T.

><MHOLMES@...> writes

>> I'm not sure what sort of an answer I'm trying to get here. If any

>> of you feel the same way, it would probably be comforting to hear

>> that, although of course it won't solve my problem. Because I have

>> had success with every day, I get a bit nervous about dropping the

>> dosage (although the money savings would sure be nice!) and worry

>> that I may start going the other direction which I sure don't want.

>

>There's no arguing with success.

>

>-------

>Regards, Dr Graham Chiu

>Prospective Internet Observational Study in Arthritis

>Home Page http://www.compkarori.com/arthritis/

>Contribute at http://www.compkarori.com/arthritis/contrib.htm

>Data Entry at http://www.compkarori.com/cgi-local/piosa.cgi

>

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

>Have you visited our new web site?

>

>Onelist: Helping to create Internet communities

>

May 3, 1999

Starla,

The only thing I can say to this is that RA is usually symmetrical,

meaning that it affects similar parts of the body on both sides.

In other words, if you have trouble with one hand, then you will

have trouble with the other hand too...or if you have trouble with

one hip, then you will have trouble with the other one too.

Ausili

roausili@...

rheumatic Questions

> From: " Starla " <Starla@...>

>

> Hi all,

>

> My mother (72) is seeing a DO next week (I'm going with her). She has

> a clear hx of OA - partial knee replacement about 3 yrs back. She also

> has NIDDM. With the exception of her feet and ankles (swelling,

> general numbness but pain in her toes), ALL of her joint problems are

> on her right side. Her left side is fine. Is that " unusual " ?

>

> I read somewhere ??? a while back that depending on which finger joints

> were affected a person could tell whether it was OA or RA. True or

> false? Didn't make sense to me, but? Basically, her fingers are bent

> at the joint nearest the nail but on one finger it's the joint nearest

> the knuckle. There's no swelling or redness and they're not hot or

> sore. Does that guarantee OA vs RA?

>

> Right now her biggest worry (reason she's seeing a DO) is because her

> ring finger is bending inwards towards her palm (it catches there). Her

> palm hurts also, and she can't close her right hand.

>

> Guess what I'm asking is does anyone here have a similar hand

> problem and does AP help? I've got this sneaky suspicion the DO is

> going to want to do surgery to " relax " her finger.

>

> She has a new PCP, whom I have not met yet, and he ran some tests but

> she doesn't know " what for. " I'm getting a copy of her lab

> tests/results and can talk more about that when I know what he tested

> her for.

>

> I'm all ears and would appreciate any and all comments.

> Thanks, Starla

>

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

> Have you visited the new ONElist home page lately?

> http://www.ONElist.com

> ONElist: The Leading e-mail list and community service on the Internet!

May 3, 1999

Hi , thanks for your response. I know this " one-sidedness "

sounds unusual, but I think it's even unusual for OA. My grandmother

had RA and it was both hands, feet, knees .... I don't remember which

joints in her fingers were affected tho'.

Thanks again, Starla

May 3, 1999

RA is not always symmetrical.

Kari

----------

>From: " Ausili " <roausili@...>

> " AP List " <rheumaticonelist>

>Subject: rheumatic Re: Questions

>Date: Mon, May 3, 1999, 2:57 PM

>

>From: " Ausili " <roausili@...>

>

>Starla,

>

>The only thing I can say to this is that RA is usually symmetrical,

>meaning that it affects similar parts of the body on both sides.

>In other words, if you have trouble with one hand, then you will

>have trouble with the other hand too...or if you have trouble with

>one hip, then you will have trouble with the other one too.

>

> Ausili

>roausili@...

>

> rheumatic Questions

>

>> From: " Starla " <Starla@...>

>>

>> Hi all,

>>

>> My mother (72) is seeing a DO next week (I'm going with her). She has

>> a clear hx of OA - partial knee replacement about 3 yrs back. She also

>> has NIDDM. With the exception of her feet and ankles (swelling,

>> general numbness but pain in her toes), ALL of her joint problems are

>> on her right side. Her left side is fine. Is that " unusual " ?

>>

>> I read somewhere ??? a while back that depending on which finger joints

>> were affected a person could tell whether it was OA or RA. True or

>> false? Didn't make sense to me, but? Basically, her fingers are bent

>> at the joint nearest the nail but on one finger it's the joint nearest

>> the knuckle. There's no swelling or redness and they're not hot or

>> sore. Does that guarantee OA vs RA?

>>

>> Right now her biggest worry (reason she's seeing a DO) is because her

>> ring finger is bending inwards towards her palm (it catches there). Her

>> palm hurts also, and she can't close her right hand.

>>

>> Guess what I'm asking is does anyone here have a similar hand

>> problem and does AP help? I've got this sneaky suspicion the DO is

>> going to want to do surgery to " relax " her finger.

>>

>> She has a new PCP, whom I have not met yet, and he ran some tests but

>> she doesn't know " what for. " I'm getting a copy of her lab

>> tests/results and can talk more about that when I know what he tested

>> her for.

>>

>> I'm all ears and would appreciate any and all comments.

>> Thanks, Starla

>>

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

>> Have you visited the new ONElist home page lately?

>> http://www.ONElist.com

>> ONElist: The Leading e-mail list and community service on the Internet!

>

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

>Want to learn more about your list users?

>

>Now you can with our new User Survey Tool - see homepage for details

>

May 4, 1999

Starla, your mother might want to look into prolotherapy for her OA.

There is a lot of info on the web. To start, check out

http://www.dorman.pub.

Ethel

Starla wrote:

>

> From: " Starla " <Starla@...>

>

> Hi all,

>

> My mother (72) is seeing a DO next week (I'm going with her). She has

> a clear hx of OA - partial knee replacement about 3 yrs back. She also

> has NIDDM. With the exception of her feet and ankles (swelling,

> general numbness but pain in her toes), ALL of her joint problems are

> on her right side. Her left side is fine. Is that " unusual " ?

>

> I read somewhere ??? a while back that depending on which finger joints

> were affected a person could tell whether it was OA or RA. True or

> false? Didn't make sense to me, but? Basically, her fingers are bent

> at the joint nearest the nail but on one finger it's the joint nearest

> the knuckle. There's no swelling or redness and they're not hot or

> sore. Does that guarantee OA vs RA?

>

> Right now her biggest worry (reason she's seeing a DO) is because her

> ring finger is bending inwards towards her palm (it catches there). Her

> palm hurts also, and she can't close her right hand.

>

> Guess what I'm asking is does anyone here have a similar hand

> problem and does AP help? I've got this sneaky suspicion the DO is

> going to want to do surgery to " relax " her finger.

>

> She has a new PCP, whom I have not met yet, and he ran some tests but

> she doesn't know " what for. " I'm getting a copy of her lab

> tests/results and can talk more about that when I know what he tested

> her for.

>

> I'm all ears and would appreciate any and all comments.

> Thanks, Starla

>

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

> Have you visited the new ONElist home page lately?

> http://www.ONElist.com

> ONElist: The Leading e-mail list and community service on the Internet!

May 5, 1999

Ausili wrote:

>

> From: " Ausili " <roausili@...>

>

> Starla,

>

> The only thing I can say to this is that RA is usually symmetrical,

> meaning that it affects similar parts of the body on both sides.

> In other words, if you have trouble with one hand, then you will

> have trouble with the other hand too...or if you have trouble with

> one hip, then you will have trouble with the other one too.

Except when it's asymmetrical as many here will report... often it

starts out asymmetrical then turns symmetrical but the lag time can be

many years.

--

Regards,

Geoff Crenshaw, ACC ----------------------

Managing Partner ** No Disclaimers **

Captain Cook's Cruise Center ----------------------

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

Over 3,000 daily cruise & tour specials > Top 5% of Web Sites

http://www.800-800-cruise.com [specials] > Top 100 Travel Sites

.. > Top Web Sites for

Cruise tips New Zealanders

http://www.800-800-cruise.com [tips]

USA PH: 800-800-CRUIse PH: 559-636-8413 FAX: 559-734-1420

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

geoff@...

" Behold now, Behemoth, which I made as well as you; He eats grass like

an ox. Behold now, his strength in his loins, and his power in the

muscles of his belly. He bends his tail like a cedar; The sinews of his

thighs are knit together. His bones are tubes of bronze; His limbs are

like bars of iron. He is the first of the ways of God. "

God speaking to Job...

December 28, 1999

Jenn,

I do two things when he misses a mastered item.

One, go back to it right away and this time immediately prompt the correct

response. For NVI this may involve a physical prompt. Then pose the Sd a

third time and try to get the correct response. (Hesitating no more than two

seconds. If the child doesn't respond within 2-3 seconds, prompt again).

My wife Patty will correct me if I'm wrong on this.

Two, I throw the item back into the current teaching pool until I'm sure it

is in fact mastered.

Mark.

December 29, 1999

Mark~

Thanks for your response. Okay so if he gets it wrong then would you say

" no " then re-issue the SD again and prompt or would you ignore the incorrect

response, re-issue the SD then prompt?

Jenn

February 18, 2000

Regarding your question about compliance problems with the change over. I

have seen this in some of the children but learned not to fade out the praise

so quickly. We inserted back some praise to keep the child's confidence up

and it seems to be going better. We are aware that the praise slows down

responses per minute and have a plan to fade back out again. We wondered if

the child was thinking that they were failing because they all of the sudden

stopped getting praised. This has been especially difficult for kids who have

been in an ABA program a couple of years. I have been excited about all of

the change, Why wouldn't the child be? (ha)

Don't know if this is the solution but it has worked for me.

February 19, 2000

At 08:33 PM 2/18/00 EST, Conzato@... wrote:

>From: Conzato@...

>

>Regarding your question about compliance problems with the change over. I

>have seen this in some of the children but learned not to fade out the

praise

>so quickly. We inserted back some praise to keep the child's confidence up

>and it seems to be going better. We are aware that the praise slows down

>responses per minute and have a plan to fade back out again. We wondered if

>the child was thinking that they were failing because they all of the sudden

>stopped getting praised. This has been especially difficult for kids who

have

>been in an ABA program a couple of years. I have been excited about all of

>the change, Why wouldn't the child be? (ha)

>Don't know if this is the solution but it has worked for me.

>

Yes, we went way overboard for my son I think. Too fast, decreased praise,

decreased primary reinforcers because kids in the videos seemed to rarely

have them, etc. And then I realized, bright move, make the kid work a lot

harder, and give him way less! He was totally confused and whined nonstop.

Since we increased reinforcers, food, praise, breaks, etc., he is happier

by far. Yes, we are back to a slower pace, and yes, we are not doing much

NET, but we are doing errorless now which is newer, doing mixed drills and

working on manding efforts and echoic efforts and that is enough for this

child to get used to suddenly. He had been doing some form, other form of

DTT for six years and was shocked by our expectations. I know he felt

punished.

Jennie

February 19, 2000

In a message dated 2/19/00 9:19:12 AM Central Standard Time,

jennie@... writes:

> Once again, in his case, I think he

> assumes something is wrong if asked, even different things many times in a

> row, especially since he can not answer much, so it probably feels like

> endless things are being thrown at him. We went back to a lot of praise and

> he is smiling more. I am still worried, but feeling a bit more confident.

Jennie,

It is good to hear that Isaac is responding a little better to the

changes you have made. I think that the attitude of the child toward the

work is crucial and especially so with older kids who have multiple issues.

The kid has to be a volunteer, after all.

One of the most difficult things we deal with in trying to teach Colin is

his response to repetition. If, in the presence of a visual stimuli, Colin

responds correctly and you give the same SD he will always give a different

response. Even if you specifically, even lavishly, reinforced the first

response Colin will always change his response if you ask again. You can ask

again at another sitting or you can preface the SD by saying, " I know I

already asked but I have to ask again... "

I hope Isaac is not developing this pattern but it is something to watch

for -- a " older kid " kind of a thing, maybe.

from Madison

February 19, 2000

Hi,

We recently did a little bit of what Lynda Rand suggested that worked with

, admittedly only over the last three days, but Ize seems pleasantly

surprised, and while the receptive scores are still alarmingly low compared

to early to mid December, I feel like maybe they will slowly get better if

we take it slowly. It is a little eerie to see your child lose an entire

repetoire of cards in a couple weeks, barely hitting 10 out of fifty, (not

all at once!) that he had down pat. I think we just can not ask him many

questions at a time without total shut-down. So, we sometimes ask function

or class first and if he gets it right, we occasionally take the cards off

the table and let him have a cookie piece or a high five or hug and he

looks shocked but delighted. I figure better for him to identify a cat as

an animal or the one that is soft once correctly and happily, and be

willing to sit and attend to three cards again and even get asked three

questions and get them right, and maybe three more cards, and need a couple

brief prompts, but still be willing to look and listen and not be unhappy,

then try to get a whole lot down because some children on videos did way

more, either in the field or the amount they were learning. We actually had

to cut back instead of move forward, because he was getting things wrong he

knew easily, nouns of objects we know he knows

when we asked many times in a row. Once again, in his case, I think he

assumes something is wrong if asked, even different things many times in a

row, especially since he can not answer much, so it probably feels like

endless things are being thrown at him. We went back to a lot of praise and

he is smiling more. I am still worried, but feeling a bit more confident.

Jennie

February 19, 2000

> I hope Isaac is not developing this pattern but it is something to watch

>for -- a " older kid " kind of a thing, maybe.

> from Madison

>

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

February 20, 2000

In a message dated 2/19/00 11:00:47 AM Central Standard Time,

jennie@... writes:

> Hi, I am unclear in exactly what pattern you mean?

Jennie,

The pattern that is a problem originated in using the Lovaas technique

and may not be a problem using the S & P/ Carbone techniques. An example

would be if you had a group of cards on the table and used the SD " Show me

the cow " and he did ; then, in the sme sitting and say within the hour, you

again included the same picture of the cow and used a similar SD " Which one

is a cow? " Colin would choose an alternate response.

February 20, 2000

An example

>would be if you had a group of cards on the table and used the SD " Show me

>the cow " and he did ; then, in the sme sitting and say within the hour, you

>again included the same picture of the cow and used a similar SD " Which one

>is a cow? " Colin would choose an alternate response.

>

Thanks for explaining. We started using various SD's early last fall and it

seems to be going fine as far as that goes. Thanks.

We are able to say it differently and now we tried going back to a field of

two, if we were going to say something very different about the cow, " Who

says Moooo? " and " Show me the circle. " and then back to, " What animal goes

Mooo? " and he will point to cow. Later, if we bring it back in a field of

three, if we have done other things and not too much receptive loading, we

still can usually say, " Show me an animal? " and " Where is a circle? " " Touch

the bed, " nice job, " Find a cow? " and he will. We usually have to stop at

this point though, because if we load up and start saying, " Where is

something you sleep on and show me a shape " and all the cow questions and

add any, he will shut down.

Jennie

August 16, 2000

Based upon what I've read, and I read everything I can, The cause of

AD(Alzheimers) is not " known " as is true for Autism. Most reaserch

on AD relates to 2 " sticky " proteins. These are thought to be the

result of 1) genitic disposition and 2) oxidative stress. This

stress is believed due to heavy metals as studies on AD brains show

abnormal metals and autopsy elevated mercury levels. There is

neurochemical research into causes and treatments of AD unlike what

approaches autism, which is largely neglected by the main stream

researches. There is alot of money in AD research and big drug

companies are spending big money in the hopes, no doubt, of big

profits. We do not know what causes all autism or even most. There

are alot of theories and partial explanaitions. There is alot of

stuff out there that identifies various abnormalities. More doctors

are starting to see an integrated " toxic " picture with mercury and

other metals and toxins as culperts that disrupt the brains

development and digestive,immune and hormonal systems. So no one can

really say what will save any given child, whether buy " cure " or

improvement. It seems that detoxing and upregulating all systems

(ie:digestive, immuno, hormonal) some kids are being saved. I've

saved money by research, getting all the tests(expensive) than

working with a doctor who will help without ripping us off (autism

treators have some in their group who make a living off our

despritness to save our kids. DMSA can be alittle expensive over

time, Melatonin is not, secretin works on approx 20%, but when it

does its great and costs about$140.00/mo., ALA is not too expensive.

Antivirals are priscription and I have a good co pay but there are

generics. Removing milk, dairy, and wheat results in 50% higher food

bills for substitutes.I will add that our therapy bills are

evaporating, and my kids are better and starting school in 2 weeks,

so it was worth it for me. I cannot say what your experience will be

but I hope it is as good as mine has been. It did take 2yrs and 3mo

for us to " normalize " our kids and each step did show improvements,

but by far the greatest and most dramatic came with detox.

Sincerely, Beverly

> The earliest symptoms of long term low level mercury poisining are

> subclinical and neurological. Due to the subtlety, these symptoms

are

> easily misdiagnosed.......

>

> ? Becuase they ALSO have the VIRAL inductions of the disease, is

this the

> reason for fairly fast symptoms to arise as seen in regression into

autism?

>

> What amount of accumulations have been tested in fetuses who are

exposed to

> mercury from the mother? Is it cocurrent to how many fillings

the mother

> has?

>

> Why does the FDA approve of known neurotoxins?

>

> Would like a list all diseases along with autism that are seen as

mercury

> poisining? Melas? Rare genetic disorders?

>

> Is organic mercury worse than inorganic? The other way around?

>

> Heard that breast milk will contain mercury in mom with fillings

and that it

> is MORE BIO AVAILABLE that passes to the newborn? How does mercury

become

> BIO AVAILABLE?

>

> Does autism have any connection to neurofibril tangles seen in

ALZHEIMERS?

> Damaged Brain Tubulin?

>

> <!--See my SuperSig: http://proxy.supersig.com/sig?

45002326_45002140-->

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August 17, 2000

Beverly

I would love for you to get on my list serve at intervenonelist (now

egroups)...short for interventions in autism . We are open to

ANYTHING that is working for our kids and share what is working and what

isn't. As

far as I am concerned, mercury may be one side of the picture, but not all.

I invite you

to think about it and be our parent professional on our list! Not all kids

fit the same mold...but

we don't chew your head off if even prayer did it for you! (even gurus,

crystals LOL). If it works

don't do anything different.....

Thanks

Kathy

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