New to Group

October 2, 2009

Thank you, Sweet Patty:

I have been treated for the H-Pylori many times; however, it seems to keep coming back. My vision has been quite bad, and I have to see a opthomatologist. Years ago, I had Glaucoma, but it went away, and we are hoping that it has not returned.

I love you too Patty, and thank you for all of the support that you continue to give....always...Lea

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Re: New to Group

Lea,I am so sorry to hear that you are struggling again. Are you treating for the H. Pylori? I hope your does not have the flu. I appreciate every effort you make to support all of these women that come for help. I love you Lea, and hope you get better.Stay in touch and let us know how you are doing.Hugs,Patty> > > >> > > > Hi-> > > >> > > > I'm Sharen, a 48 y.o. with saline implants (BA in July 2008). In> > > February 2009, I started to develop panic attacks, depression, inability> > > to handle stress, hypersensitivity to noise, MS-like symptoms of> > > alternating pain and feeling like my legs were going to sleep, muscle> > > twitching, insomnia, nightsweats, fatigue, digestive problems. I have> > > undergone all kinds of testing for thyroid, hormones, etc. and am> > > actually getting a little better under the care of a holistic M.D. here> > > in Virginia. I still have problems with insomnia, depression and some> > > anxiety, as well as the nightsweats. These problems were originally> > > attributed to fluctuating hormones and adrenal insufficiency, but I'm> > > starting to wonder if my body may be reacting to the silicone bags> > > housing the saline. My question is: What tests do I have my doctor> > > request to find out if my implants are causing me problems? Thanks!> > > >> > >> >>

October 2, 2009

patty;

yes, i'd love to hear from women who've used him.

anyway, my point was he's probably the only one that can tell how much silicone you might have floating around, as opposed to just being reactive to it.

gg

Re: New to Group

gg,I don't know for certain...what I do remember was the focus on the platinum toxicity. You might be able to call his lab and find out more info from them.I don't know enough women who have seen or worked with him, but I am under the impression that he is good at what he does. Check out the posts, if you can, or call their office for more assistance and if you do, please let us know if you find out anything significant.Thanks gg!PattyRe: Re: New to Grouppatty;does he not test for silicone itself, and if so, has it been found to be high in most women? is that how he reads it - like high, low, etc.? do the ladies who've done the testing feel he's worth it and that he's probably pretty accurate?thanks.gg-----Original Message-----From: glory2glory1401Sent: Sep 30, 2009 8:42 PM Subject: Re: New to GroupGG:Oh yes, I've heard of him for sure!One of our local ladies has sent tons of info on his work, personally to me and perhaps on the group as well.If you do a search through the archives for his name, you will see what has been discussed.It's mostly platinum that he is concerned with, from my understanding. But, as usual, these experts and their work are rarely acknowledged by those who have a vested interest in keeping breast implants on the market and out of courts. I believe their science is sound, but they can only work on us one at a time, and most of us can't afford their services, unfortunately.Pattypatty:am wondering if you;ve heard of E.. Lykissa in TX. (i think hes a toxicologist) - i think he claims he can tell how poisoned one is with silicone if you send him certain bodily fluid samples. i've never used him, but have heard of people who have - he was too expensive for me, but i considered it. or, like i posted on other message, has anyone else out there heard of or used him.? am wondering if maybe Ilena has heard of him.gg

October 12, 2009

Welcome to the club that nobody really wants to be a member of.

You can start by telling us your name and where you live. You never know who

might be living right in your neighborhood.

Then tell us when you were diagnosed and what treatment you have had. I'm

assuming that you started with 400 mg of Gleevec daily.

Zavie

Zavie (age 71)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

3.6 log reduction Apr/08

3.6 log reduction Sep/08

3.7 log reduction Jan/09

3.8 log reduction May/09

3.8 log reduction Aug/09

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 613-482-4801

Cell: 613-282-0204

ID: zaviem

_____

From: [mailto: ] On Behalf Of

mswerlein

Sent: October 11, 2009 9:58 PM

Subject: [ ] new to group

hello to all.....i have been reading your posts for the last couple of

weeks and are amazed at the way you support eachother. i am new to this

and have so many questions i don't know were to start so i think i will

watch for a while longer. thanks so much

October 12, 2009

HI! DON'T BE SHY, JUMP RIGHT IN, WHAT'S YOUR NAME, WHERE ARE YOU FROM, WHEN WERE

YOU DX, WHAT ARE YOU ON? SEE, THAT'S A GOOD START.

I'M BOBBY, I LIVE OUTSIDE CLEVELAND OHIO, I WAS DX IN 1995 , I'M IN THE ARIAD

TRIAL AND I'M 79. SEE? THAT'S HOW EASY IT IS. AS LONG AS WE HAVE THIS CRAPPY

DISEASE, WE MAY AS WELL MAKE THE BEST OF IT AND GET TO KNOW OTHERS IN THE SAME

BOAT, SURE MAKES IT A LOT BETTER TO HANDLE. WE'D ALL LOVE TO SHARE YOUR STORY,

BLESSINGS, BOBBY

a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995

Interferon/9 weeks/hydroxyurea/5 years

02/2000 - Gleevec Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 -

Gleevec/Zarnestra Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months

#840 - Zavie's Zero Club 09/2006 - out of CCR 04/29/08 - XL228 trial/U of

Michigan

01/09/ - PCR 5.69

02/13/09 - XL228 trial ended due to side effects

o4/13/09 - Ariad Trial U of Michigan

09/09/09 - PCR 0.017

04/13/09 - Ariad trial at U. of Michigan

09/09/09 - PCR 0.017

04/13/09 - Ariad trial, U. of Michigan

09/08/09 - PCR 0.017

From: mswerlein <mswerlein@...>

Subject: [ ] new to group

Date: Sunday, October 11, 2009, 9:57 PM

hello to all.....i have been reading your posts for the last couple of

weeks and are amazed at the way you support eachother. i am new to this

and have so many questions i don't know were to start so i think i will

watch for a while longer. thanks so much

October 12, 2009

MSWerlein,

Welcome to our little group. I am a relative newbie, but I can tell you there

are so many folks on here with lots of wisdom and experience that can answer any

questions you might have. Sorry you are part of our club, but I trust you will

find the support you need here.

Beth

[ ] new to group

Â

hello to all.....i have been reading your posts for the last couple of

weeks and are amazed at the way you support eachother. i am new to this

and have so many questions i don't know were to start so i think i will

watch for a while longer. thanks so much

October 12, 2009

welcome to the group. sorry you have to be here but it's good to have you. I am

glad you are doing well. I'm . i'am 25 year old single mom,diagnoised in

may but doing well to. God bless

>

> Welcome to our group of CML warriors,

> My name is Carolyn and I was diagnosed in November of 2005. I live in

Wisconsin. I was started out on Gleevec and the had to switch to Sprycel. The

Leukemia has been undectable for over a year now. While I know when you hear

the diagnosis it strikes terror in your heart. Your head is spinning with

questions. You can take comfort in the fact that there are now miracle

target drugs for just our kind of Leukemia. Feel free to ask any questions you

may have someone in the group is sure to have gone through the same thing

and can give you insight. Be sure you have a onocologist that you are

comfortable with and is versed in CML. Most people go on to live a fairly

normal life. Right now it is so fresh for you that I am sure all you can focus

on is the diagnosis but it will get better and life will go on. Never be afraid

to ask a question or if you are just feeling blue let the group know we are

there for each other.

> God Bless You and Yours

> Carolyn

>

> __________________________________________________

>

January 15, 2010

Hi Kim,

Welcome to the group!Â I remember telling my doctor that it felt like pain was

ping ponging around my body when I was newly diagnosed.Â My ankles & feet hurt

always though.

Connie

From: lankfordlk <lankfordlk@...>

Subject: [ ] new to group

Date: Friday, January 15, 2010, 3:40 PM

Â

Hi everyone, I am new to the group and relatively new to RA. I was

diagnosed about a year ago, although my RA factor was negative and so was my CCP

my CRP was 84 ( I guess its supposed to be less than 4) anyways was on

prednisone, methotrexate and celebrex and was able to wean off of everything for

about 4 or 5 months. gradually I have been taking the celebrex again and now

taking it 2 times a day. I think the next step is Enbrel for me. My question

for all you veterans is, does your joint pain seem to be in the same areas all

the time? I have pains in various parts on various days. one day my foot will

hurt then my knees or my hand or shoulder. it just drives me crazy! I also was

told I have tendonitis in my knee but not sure how to tell the difference

between joint pain and tendonitis. Any ways its nice to talk to some people who

can relate. Thanks

Kim

January 15, 2010

Mine started off like that, too, going from joint to joint. My ankles

and feet have never been affected, though. I was my hands, shoulders,

and knees once it stopped the ping ponging. (I think ping ponging is a

good way to describe it.)

Sue

On Jan 15, 2010, at 3:56 PM, Connie Estep wrote:

> Hi Kim,

>

> Welcome to the group! I remember telling my doctor that it felt

> like pain was ping ponging around my body when I was newly

> diagnosed. My ankles & feet hurt always though.

> Connie

>

January 15, 2010

Hi-

I do not post much, but the group is full of useful information.

I was diagnosed in May and when diagnosed complained of having " traveling pain "

in a different part of my body every morning-it felt like my body was attacking

itself. I am now on 15MG meloxicam daily and 3 2.5MG MTX every Friday night. I

may need to increase the MTX after my next rheumatology visit as I have had

greater daily pain since November. Now it is mostly my hands (right one the

most)-thumb and wrist-left one not so much once the stiffness goes away in the

morning. Both of my feet hurt most days-radiating pain on the top and toes and

sometimes heels. Occasionally I have pain in other areas-shoulders, knees,

back-but not every day. My pain is manageable and I do not miss work due to RA.

I find I do not have as much energy after work though.

I now do as much as I can and do not create pressure on myself. If I am tired-I

sit down, nap or go to bed. I have a husband that is a big help. Take care of

yourself...I think it takes awhile for the meds to work properly and to get the

correct mix of meds.

Margie

>

> Hi everyone, I am new to the group and relatively new to RA. I was diagnosed

about a year ago, although my RA factor was negative and so was my CCP my CRP

was 84 ( I guess its supposed to be less than 4) anyways was on prednisone,

methotrexate and celebrex and was able to wean off of everything for about 4 or

5 months. gradually I have been taking the celebrex again and now taking it 2

times a day. I think the next step is Enbrel for me. My question for all you

veterans is, does your joint pain seem to be in the same areas all the time? I

have pains in various parts on various days. one day my foot will hurt then my

knees or my hand or shoulder. it just drives me crazy! I also was told I have

tendonitis in my knee but not sure how to tell the difference between joint pain

and tendonitis. Any ways its nice to talk to some people who can relate. Thanks

>

> Kim

>

January 23, 2010

Hi Alyssa and welcome!

The nutriiveda appears to be supporting the metabolic system somehow -it's

obvious in my son alone..but since you have unusual testing in the carnitine I

believe you should prior to starting check out the following with your child's

doctor/s. I'm sure the nutriiveda will be approved going ahead no matter what

-but just wanted to share the following archives about carnitine as I don't want

anything that's good in the nutriiveda to skew the test results (which I know

can happen in supplementing). Carnitine deficiency is typically very rare but

from feedback in this group appear to be very high compared to the norm for some

reason (getting back to metabolic) Let me know if you are working with a

medical doctor on this that is knowledgeable about metabolic issues. One other

thing is that I'm sure Robin Ketchum -Mel's mom -will speak to you about her

daughter and seizures. She almost died of seizures twice in the past 4 years

-but for some reason has been seizure free since on the nutriiveda.

http://littlemermaidmelanie.wordpress.com/about

Archive

CARNITINE DEFICIENCY testing and archive

Just a reminder that carnitine unlike the amino acid carnitine is

something to take serious. You may not see changes on or off

supplementation but this is typically rare and appears to be high in

this group out of those children tested.

Also just wanted to point out that me and many others here had the

blood draws ordered through our regular pediatrician and the labs done

through medical labs -and if tested low the child is put onto

prescription carnitine with a referral to a geneticist that specializes

in metabolic disorders. Try the basics which mean appropriate

therapies for your child and the oil therapy and in most cases that

alone will create remarkable surges and you can save your time and

money for karate and swimming lessons -maybe some hippo therapy or a

much needed vacation for the family. The biomedical group if not

needed is complex and expensive. And BTW =the brilliant Dr.

is a

traditional medical doctor/pediatrician and so is my co author of The Late

Talker book neurodevelopmental pediatrician Dr. Marilyn Agin. Watch

what you

post here about regular medical doctors because they are part of this

group and

they have feelings!

And in case it wasn't clear -if you go through your ped it can all be

covered by

your insurance. My son's was.

Here's more on carnitine from an archive

Re: Levocarnatine

Is what you are using prescription?

" Certain levocarnitine products have been specifically approved by

the U.S. Food and Drug Administration for medical use and are

available only with your doctor's prescription. Other levocarnitine

products are sold without a prescription as food supplements and

should not be used to treat serious levocarnitine deficiency. "

http://www.drugs.com/cons/levocarnitine.html

Not much if anything may change in the tone or speech -but that's

not the reason to supplement with prescription carnotine. The

possible side effect of sudden death from carnotine deficiency

outweighs any side effect of levocarnitine. If not -I suggest you

take your child to a medical doctor; preferably a geneticist who

specializes in metabolic disorders and there have been a few posted

here as recommendations. How much do you know/were you informed

about carnotine deficiency?

In this group out of those that did blood draws there was an

alarmingly high number that tested low in carnotine which is

typically rare. Here are some archives -first from Tina who's

apraxic child was doing really well -but she like I did the blood

draws just to check. While Tanner tested normal -Landon tested low

in carnotine:

" Going to a geneticist that specializes in metabolic disorders would

be very helpful. My understanding from what I have read a biopsy

helps confirm mito disorders. Lab work is first though. The link

below might help you find more answers.

http://www.umdf.org/site/c.dnJEKLNqFoG/b.3041929/

United Mitochondrial Disease Foundation

Landon's carnitine level was 23 normal was 25-70 in July. In Dec. it

was ran again and it was 76 again normal range 25-70. The geneticist

that specializes in metabolic disorders isn't concerned with his

Carnitine level being high. He did run a lab to see if it is coming

out in urine which is what would happen if it isn't being used up.

And he did run Carnitine again in Feb so it probably will be higher

than it was in Dec. We will probably have to adjust his dose.

Landon could come off Carnitine right now, but I thought it was

helping him some so the doctor said to continue. Regular blood test

should be done to check levels so dosing can be changed either

increased or lowered.

Here is an article that discusses Carnitine and CoQ10. It is a good

explanation, hope you all will take the time to read it from the top

to the bottom.

http://www.mdausa.org/publications/Quest/q61coq10.html

HTH,

Tina "

Some have suggested the better doctors in this area because

apparently there are not that many out there! Also while Kathy from

our group who I highly respect talks about an OTC brand -

highly advises against OTC for carntine if a child tests low. And

for those that don't know -do not supplement with carnotine unless

your pediatrician orders the blood draws that we talk about here

first. You want to know prior to supplementation if your child is

deficient.

More archives below

Unlike other supplements -a carnitine deficiency could come with the

most severe consequence over time since carnitine deficiency is

associated with sudden death. The good news is that at least you'll

know early -most people don't find out their child was deficient in

carnitine until it's too late. (we all heard about that football

player in HS with the sudden heart attack) Also how else are you

going to guarantee that not only are you going to give and keep

giving your child this supplement which they 'have' to take -but

that your child will know to monitor with his doctor and continue to

supplement if needed perhaps the rest of his or her life? This is

why you want to investigate this aggressively with a geneticist.

There are a few who have been recommended here as I understand that

there are not yet enough geneticist who specialize in metabolic or

mitochondrial disorders.

If found to have a carnitine deficiency, like your child, you would

want to take your child to a medical doctor that was knowledgeable

about what that means as this is not something to take lightly. It's

good to get the prescription form of carnitine so you know the

quality, correct dosage -overseen by an MD. Also once tested low in

caritine you would also want to discover why by taking your child to

a geneticist who specializes in metabolic disorders. I believe based

on the findings of blood analysis from this group that any child

going ahead diagnosed with apraxia or autism should be tested for a

carnitine deficiency. As you'll be hearing more about this soon from

Dr. -the numbers of children that tested low in this

amino acid were off the charts. Typically it's a rare disorder

affecting one in 20 to 40,000. This was also the reason I took my

son Tanner for all the blood testing -to test for this one deficiency

since it can be so severe if left untreated.

Here's some quotes from Dr. who is head of fellowship

research at her hospital -a pediatrician -and mom to an apraxic child

who also tested to be carnitine deficient. Below this is an archive

on this which includes all the testing which you can share with your

child's medical doctor to secure the testing. We did this with our

son's " regular " pediatrician and all the blood word was covered by

BC/BS.

" Impact of carnitine supplements may not be clinically obvious - but

could be

helping strengthen heart muscle. Low levels are associated with a

floppy

dilated weak heart, and when it approaches 10-20% of normal, sudden

death can

occur. Carnitine is essential for normal cell/mitochondria function.

It

allows fatty acids to get transported into the mitochondria (or the

battery

of the cell). Major problems if this is not working properly. So you

may be

getting benefits that you don't obviously see. One does not want to

run

around with a severe carnitine deficiency and not treat it. "

end of quote

Carnitine and Carnosine are 2 TOTALLY different supplements.

Carnitine plays a key role in transferring long-chain fatty acids

into the mitochondria.

There has been some research done on carnoSine (amino acids

histidine and alanine), and carnaware has carnoSine + vit E + zinc.

There have been some preliminary studies that show benefit of

carnaware in autism and other speech disorders. There are many

members with personal experience with both carnosine and carnoware.

I suspect the vitamin E of carnoware is contributing to benefits,

based on what vit E alone can do.

Without sufficient CarniTine...the mitochondria (or

cell " batteries " ) don't run very well. There can be symptoms from

muscle weakness, heart problems to severe brain and metabolic

abnormalities and in some (rare) cases... to the extreme of sudden

death from carnitine deficiency...depending on how severe and the

exact cause.

I know very little about Carnosine...was planning to try it some

day, but then discovered vitamin E. Carnitine is harmless. If you

take too much, you will smell bad. Otherwise, harmless. It can cause

stomach upset, so should be taken with food. - "

Carnitine deficiency is typically rare -around 1 in 40,000. I don't

know if the deficiency your child has is considered severe or not but

either way I'd check it out. In this group out of the few that did

blood draws an alarmingly high number tested low in this amino acid

and that's concerning for a number of reasons. The main one is that

there may be no sign of a carnitine deficiency -but it can have

serious affects if left untreated. If discovered consider it a

blessing as most don't know about this deficiency until it's " too

late " and it's easily treated by prescription carnitine.

The suggestion is that if a child tests low on carnitine to take him

to a geneticist who is a metabolic specialist for a complete work-

up. There have been a few suggestions for particular MDs posted

here.

~~~~~~~~~~~~~~~~~~~~

=====

January 23, 2010

Have you tried other 'biomed' approaches? B12 was great for my son's speech!

Good luck, IÂ wish you and your son the best!

From: Alyssa Nagy <aw_nagy@...>

Subject: [ ] New to group

Date: Saturday, January 23, 2010, 5:22 PM

Â

Hello, I wanted to introduce myself as I am new to this group but not the

journey.Â My son is 9 1/2 yrs with apraxia, PDD/NOS, seizure

disorder.Â has been in speech therapy since he was two within his

school and private settings.Â When he started EI he jargoned without any true

words, he also had some words then lost them.Â has come a huge way

since then, he is now very verbal but struggles with intelligibility issues, and

many other LD problems too.Â At this time we are fortunate to see Barbara and

have her on our team.Â She mentioned to me only last week about Nutriiveda.Â

After reading everyone stories I feelÂ the need to give it a try.Â

The main point of interest for me is that has had abnormal total and

free carnitine levels done, while all other labs for mito have come up within

normal limits.Â Could this imbalance be the cause of his seizures,

constipation, speech/language etc???Â So I have given this a good amount of

thought and asked Barbara to order me some for .Â I am skeptical as we

like so many others have tried so many things.Â But how can we not look for

that beacon of hope?Â Our first can should be here any day, I hope first that I

can get to take it without too much of a fight.Â Â If that goes well I

hope to keep you posted on what might be happening around here.

Wish us luck,

Alyssa

January 23, 2010

Thank you for your reply and information.Â Â I have read the blog of the groups

members and that is what i am finding intriguing.Â As far as 's levels

seem to be of unknown origin.Â He has seen a Developmental Ped/biomedical and a

Geneticist at Hopkins both with the same results.Â Which is ????.Â We have

spent tons of $$ getting genetic testing done w/o any answers.Â We did find out

that Matt has an additional chromosome #3 but again know one seems to know what

that might be related too.Â His urine samples have been sent out and wnl.Â The

only thing that the geneticist recommended isÂ to put Matt on carnitine

supplements, which i did for a while but saw no improvement in him at all.Â

I am not a big bio-person. I am not against it I just doesn't seem to be the way

for us to go.Â So here we are getting ready to give yet something else a try:-)

Alyssa

________________________________

From: kiddietalk <kiddietalk@...>

Sent: Sat, January 23, 2010 7:43:14 PM

Subject: [ ] Re: New to group

Â

Hi Alyssa and welcome!

The nutriiveda appears to be supporting the metabolic system somehow -it's

obvious in my son alone..but since you have unusual testing in the carnitine I

believe you should prior to starting check out the following with your child's

doctor/s. I'm sure the nutriiveda will be approved going ahead no matter what

-but just wanted to share the following archives about carnitine as I don't want

anything that's good in the nutriiveda to skew the test results (which I know

can happen in supplementing) . Carnitine deficiency is typically very rare but

from feedback in this group appear to be very high compared to the norm for some

reason (getting back to metabolic) Let me know if you are working with a medical

doctor on this that is knowledgeable about metabolic issues. One other thing is

that I'm sure Robin Ketchum -Mel's mom -will speak to you about her daughter and

seizures. She almost died of seizures twice in the past 4 years -but for some

reason has been

seizure free since on the nutriiveda. http://littlemermai dmelanie. wordpress.

com/about