scared

[Guest guest]

Kathy - do you find that stevia hasa a licorice aftertaste? I got a sample in

the mail, and it was very powdery and licoricey. Has anyone studied the

effects of stevia? I know it's made from plants, but so are a lot of very

poisonous substanes (tobacco, hemlock..) Nothing's easy, is it?

[Guest guest]

We tried Kutapressin and we are convinced it was the best thing we ever did.

Our son is still on it-1 time per week. We have been seeing Goldberg for 4

years-been on Kuta. for about 2. It took at least 6-9 weeks before we saw an

appreciable difference but then the changes came steadily and continuosly. I

know many others who have had the same result.

We tried Zovirax a few years ago and our son did well. Diflucan was fine. We

tried Famvir about 2 months ago and it did not go well. We stopped after 3

weeks. Goldberg says we should have kept going (it was die-off, he thinks)

but our son was acting differently, much more emotional, and it was making it

difficult for him at school.

Goldberg said it probably meant there is a virus in the background and we

need to get to it. He wants to do it again. I suggested maybe our son had a

reaction to the drug itself(famvir) and coulnt' we try something else. He

said Valtrex since we had never done it. We are going to wait until right

before spring break and start him on it then. Goldberg wants us to try a

heavy Kutapressin routine about 4-5 weeks before we do this to really boost

our son's immune system, and hopefully help negate any bad side effects we

see. famvir is the only anti-viral we have ever had a problem with.

[Guest guest]

I completely understand your frustration regarding tantrums. My son is one

of those who becomes completely out of control. It is sometimes hard to

separate out, what is die-off and what is the med. My son did awful on the

first two antivirals we tried. I just stressed that I knew it was no longer

a die-off but adverse reaction. He did tolerate valtrex with the dye washed

off. Kutapressin has also been a helpful addition. We started to notice

improvements after 6-8 weeks. There are no easy answers, unfortunately.

Cheryl

Re: scared

> From: Valleyhts@...

>

> OK folks....I began this inquiry and had many people ask what WAS the

> reaction? Well, our son is normally a very happy child with good self

esteem

> and self image. He is generally cooperative and laughs (appropriately)

> numerous times per day. Suddenly, on valtrex and zivorax (tried separately

> several months apart for at least a 5 -6 week duration each), he was

> depressed and very non-compliant. His tantrums alienated him from his

peers

> at school. At home I thought he and I would both lose our minds. He would

cry

> at a drop of a hat and complained of headache. His tantrums, folks, were

wild

> and frightening. I remember one time calling the answering machine of Dr.

> Goldberg's office begging to discontinue. Dr. Goldberg stated that this

was

> " die off " and to expect improvement " soon " but it went on....and on....

and

> on and on for, like I said, up to six weeks. I finally called the office

and

> said that was enough. Without support, I stopped and within two days I saw

my

> little boy become happier until his true happiness returned soon

afterward. I

> swore that I would rather have a happy and content autistic kid than a

> miserable, unhappy, screaming, punching, kicking, destructive non-autistic

> kid any day........and now I am facing the kutapressin dilemma....

> One time I remember hearing a lecture featuring Temple Grandin. She

supports

> medication use in children with autism, but warned, " if you do not see a

> positive response in a timely manner, stop the medication! " I am really

> struggling with this kutapressin because believe me, I remember the

sadness,

> depression, and you'd-think-we-were-killing-him style tantrums. (Let me

> reiterate: I still believe this treatment regimen can help some children;

I

> am just not certain it can help mine.) Becky

>

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

[Guest guest]

I think that stevia has an after taste in things like iced tea but it seems

to be OK in applesauce and baking. I use alternative grains such as spelt for

baking! Kathy

[Guest guest]

Can I ask why you use spelt? Isn't that just a lab engineered form of wheat?

thx,

[Guest guest]

Hope things go well! Kathy

[Guest guest]

No, it's a cousin of wheat, actually all grains are related botanically so

they are all cousins. I got the history from a German recipe book but at one

time it was used more than wheat in Germany and for some reason wheat became

more popular. This was about two hundred years ago we reckoned. Kathy

[Guest guest]

Hi Becky,

We tried Famvir anti viral with terrible result. Then we tried Valtrex with

improvements in focus and calmness. We have been doing Kutapressin for

about 2 + weeks and the improvements are steady and great. He is happier,

healther, more social, fine motor improvements, He is sleeping through the

night. He asks for the shot. It is making him feel better.

Good luck,

scared

> From: Valleyhts@...

>

> I support the idea behind anti-viral meds for our kids, however my son's

> reaction to two anti-virals was HORRIBLE!!!!!!!! Now Dr. Goldberg is

> encouraging a trial run of Kutapressin so I need to hear from people who

have

> had 1) tried at least one oral anti-viral med with negative or no

> improvement results and 2) tried kutapressin. What were the results of

the

> trial with Kutapressin?

> I am very, very scared because his experience was unbearable to him and to

my

> whole family. Please, please, please advise. Becky

>

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

[Guest guest]

Thank you for sharing! It is so great to hear about kids doing well and

making progress! Kathy

[Guest guest]

I haven't been diagnosed yet, I suspect I will. I just cry alot. I

recently remarried and I don't know if a family is in the plans for

us. I don't want to be sa cripple. Please someone give me some

advice. I really don't know what to do. Thank you for listening,

God Bless.

[Guest guest]

Hi, hon. The first thing to remember is that you haven't been diagnosed. The

second thing to remember is that if you are diagnosed with MS, once you are,

you can start doing something about it. There are lots of treatment avenues.

LDN is one of them. Read the info on the site, and give that to your doctor

if you think it is something you'd like to try.

is quite right, of course. Not everyone with MS does become crippled.

I am partially crippled, actually, but I'm in the minority of people with MS

who develop serious problems early on. I wasn't diagnosed for several years

after its onset, got no treatment for anything, and I think that's why I'm

in pretty bad shape. Most people don't develop serious disability--if they

ever do at all--until about 25 years down the road.

And even if you do wind up with some disability, it's not the end of life. I

walk with a cane or a rollator. I'm too old to have kids, but I do have a

couple of dogs, including a very young and lively one, and I still manage to

handle them. :-) I know a lot of MSers via the Internet, including many in

wheelchairs, and they still have families and lives.

So . . . don't borrow trouble. Learn as much as you can about the various

treatment options available. Talk to supportive people. Remember that human

beings, including you, are adaptable creatures.

And don't forget to breeeeeeaaaaathe.

Best,

Galoux

[Guest guest]

Lea, Thank you for your encouragement. I cannot get explanted sooner. I am going to see Dr. Feng, who is a 7 hour drive away. We have to stay there for up to five days. My husband is taking time off work to take care of me. I did have an echocardiogram last week. It showed no abnormalities....just as all my other tests. I just feel like this illness has invaded every part of me. Lea <devans@...> wrote: Dearest :I'm so sorry that you have to go through all this pain and suffering. I wish that you could have an ECG to see what is going on with your heart. Please see your family doctor and ask for help. I too had some severe problems with my heart before I had these devices removed. The good news is that my heart is

fine except for the MVP, and even this condition has improved...if that is possible.Honey, is there any way that you could be explanted sooner? I think that if you see your doctor he/she will help to put your mind at ease.Sending love always........Lea~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~`` scared>> Hi all,>> As you all know, I am scheduled for explant on Feb. 3. I am afraid that > it will not be soon enough. I have had a rough few days. My neck and > spine has hurt so bad. I have no strength and have been extremely > fatigued. The part that is scaring me is my heart. I have had extreme > pain and burning in my chest.

I can feel my heart jump around, like it is > an engine struggling to fire up. My heart rate changes from very low to > high without any physical exertion. I get winded when I talk, and my > right kidney has been hurting. I almost passed out at church, and couldnt > participate in worship. Last night I was lying in my bed and my heart > started to pump very hard and I couldn't sleep. I prayed and it calmed > down so I could sleep. I was afraid I wasn't going to wake up again if I > fell asleep. My husband lost his first wife and found her dead, I was > afraid he was going to have to go through that again. Have any of you > ever felt this way?>> >>>>>>> Opinions expressed are NOT meant to take the place of advice given by > licensed health care professionals. Consult your physician or licensed

> health care professional before commencing any medical treatment.>> "Do not let either the medical authorities or the politicians mislead you. > Find out what the facts are, and make your own decisions about how to live > a happy life and how to work for a better world." - Linus ing, > two-time Nobel Prize Winner (1954, Chemistry; 1963, Peace)>> See our photos website! Enter "implants" for access at this link:> http://.shutterfly.com/action/>>

[Guest guest]

You bet, the mind tries to be in control all the time.

Kenda

> Thanks Rogene,

>

> Can anxiety problems arise even at times of rest?

>

> Rogene S <saxony01@...> wrote:

> ,

>

> It sounds like an anxiety problem . . . It might help

> if you found a way to spend the day relaxing,

> concentrating on pleasant things . . . Whenever a

> depressing thought comes in, shoo it out, and think

> happy thoughts.

>

> It's not at all unusual for a woman to have her worst

> times just before surgery.

>

> Do drink plenty of non-chlorinated water.

>

> Find a funny movie, inspirational book, meditate, do

> something you love doing, think of all those who love

> you and all the wonderful times you've had with them.

> Look at old picture albums and remember the good

> times. Controlling the thoughts you dwell on can go a

> long way toward feeling better.

>

> Hugs and prayers,

>

> Rogene

>

>

>

> Opinions expressed are NOT meant to take the place of advice given by licensed

> health care professionals. Consult your physician or licensed health care

> professional before commencing any medical treatment.

>

> " Do not let either the medical authorities or the politicians mislead you.

> Find out what the facts are, and make your own decisions about how to live a

> happy life and how to work for a better world. " - Linus ing, two-time

> Nobel Prize Winner (1954, Chemistry; 1963, Peace)

>

> See our photos website! Enter " implants " for access at this link:

> http://.shutterfly.com/action/

>

>

[Guest guest]

,

Welcome to . . . I don't remember you

posting before! . . . I hope I haven't missed you.

We'll be praying for your successful surgery and

recovery. . . I hope you'll come back and let us know

how you're doing!

If you have any questions, we're here to help if we

can.

Hugs and prayers,

Rogene

[Guest guest]

Jackie, Thanks for sharing, keep up posted on your surgery and recovery, and anything else we can pray for. Calderon <jackiejack21@...> wrote: Hello, I also had that same feeling.I would be sleeping and all of a sudden my heart was racing and I wanted to tell my husband to call 911. But would sit on the floor and try to relaxes and take deep breaths.Sometimes I would be sitting or taking a shower. I'm going to have this implants taken out this week on thrusday January 19. I hope eveything goes well. I'm very nervous. I gone though this 4 times because my implants ruptured. I will keep you in my prayers. I always say some prayer for women who have them and

women who dont have them no more. Jackieauntsisnj <auntsisnj@...> wrote: Hi , I had that same heart jumping experience when sleeping at night, I had it before surgery and I had it for about a week after surgery. Haven't had it since then. It is terrifying, that's for sure. Actually a few weeks before my surgery I wasn't sure I was going to make it to my surgery either, but luckily I am here to talk about it.Sis>> > Hi all,> > As you all know, I am scheduled for explant on Feb. 3. I am afraid that it will not be soon enough. I have had a rough few days. My neck and spine has hurt so bad. I have no strength and

have been extremely fatigued. The part that is scaring me is my heart. I have had extreme pain and burning in my chest. I can feel my heart jump around, like it is an engine struggling to fire up. My heart rate changes from very low to high without any physical exertion. I get winded when I talk, and my right kidney has been hurting. I almost passed out at church, and couldnt participate in worship. Last night I was lying in my bed and my heart started to pump very hard and I couldn't sleep. I prayed and it calmed down so I could sleep. I was afraid I wasn't going to wake up again if I fell asleep. My husband lost his first wife and found her dead, I was afraid he was going to have to go through that again. Have any of you ever felt this way? > > > Opinions expressed are NOT meant to take the place of advice given by licensed health care professionals. Consult your physician or licensed health care professional before commencing any medical treatment. "Do not let either the medical authorities or the politicians mislead you. Find out what the facts are, and make your own decisions about how to live a happy life and how to work for a better world." - Linus ing, two-time Nobel Prize Winner (1954, Chemistry; 1963, Peace)See our photos website! Enter "implants" for access at this link:http://.shutterfly.com/action/

[Guest guest]

a and Audrey, You are both right that negetive thoughts can take us down just as much as our symptoms. When I had to drop out of my nursing courses this past fall, I was getting really down. Then I signed up for a class at my church. We read the book "Battlefield of the Mind" by Joyce Myer. We met once a week to discuss a few chapters at a time. This book was very helpful, it really helped me understand where negative thoughts come from and how to prevent getting cought up in the spiral of self destruction. If I had this class before implant I would not be in this mess today. bluejaybliss <bluejaybliss@...> wrote: Audrey, A Grateful Journey sounds neat. My husband(Bless his patient heart) is trying to help

me stop thinking/expressing neg. thoughts and sad emotions as they arise. Since my condition has become a daily trauma, finding positive is an effort. I'm an open book. I am what you see. Which for the most part is good until a crisis comes up. And I wear my self/husband out emotionally. I've got to share this was so cute... My husbands just came and kissed me saying, "Your little fingers are going so fast-how cute". I told him, "yeah, when you hear me typing its giving your ears a rest honey". He has been such a God sent Blessing. I so Thankful for his support and caregiving. Anyway Audrey, I"m starting My Grateful Journal tonight. a

[Guest guest]

Well said a, I know my husband is more anxious for my recovery than anyone. Randy has been there for every step. He has gone with me to almost every doctor appointment also. He has been my advocate when a treatment wasnt' going anywhere. He has spent more time researching my symptoms online than I have. He is always prepared with questions and possible treatment everytime we go to the doctor. He can understand your husband's frustrations also. He was so upset the one time he couldn't come with me, the doctor told me I needed see a psychiatrist. He felt like he wasn't there to protect me. He wanted so bad to go tell that doctor off...I wouldn't let him. My referring doctor apologized for sending us to him. As much as our husbands are supportive of us, they also need support. They should start a support group for the husbands of implanted women. bluejaybliss <bluejaybliss@...> wrote: Audry, I know our husbands are so helpless feeling. My husband and I are brutally honest with each other (it works for us) We have only been married for 4 yrs. 8 months after we married was when my condition started everyday and has progressively gotten worse since. At first he thought I was giving in to depression because my dad passed away 2 months before we married(on my Birthday) and my dad was like a best friend as well as my mentor. I was in grief also, but I knew it wasn't depression. 2003 I woke up and could not raise/lift myself up and then I could not walk without his help. He knew then something bad was taking over my functions. He talked me into Chiropractic which is in Holistic Med

as well.. He went with me to 4 Drs. and to them I had no real reason I should be sick. When he took me to my Chiro. and seen the inflammation scan results he almost cried. And apologized for not understanding. A year and half twice week Chiro. helped me gain enough strentgh to make Atlanta trip. After 3 hrs. of her consult and a few lab results from there, he got those tears again, and he said, "I can't believe I had been thinking the past year you was maybe giving in to some of your pain," he apologized again. if I had actually been giving in to the pain- he would still have taken care of me. Audry, I've learned its so hard for men to express their fear and sadness, due to wanting to be the strong one. In the mist of my condition, I've noticed at times he has his aches and pains but would never express it so I wouldn't worry. I'll be so glad when I can go a day without being so

disabled and our marriage is not based on my good/bad days. For many yrs there was no light at the end of that tunnel.. I see light now. Our husbands, children and family and friends need prayer also. They Love us and feel so helpless seeing our pain. Educate and allow your husband/family to be a part of your every step. Although some men may seem not interested. They are, but, its really overwhelming for them too. It takes time to soak in for them, because they wished we didn't have to go through it. Take Care, a

Photos Got holiday prints? See all the ways to get quality prints in your hands ASAP.

[Guest guest]

, your right a support group for husbands-family would be

great. They would feel then its okay what they are feeling and they

go through fear-anxiety-anger-grief also. In 1993 I was diagnosed

with just about every mental illness. Each drug they treid never

helped my complaints. They had me like a zombie so I wouldn't feel

like I was sick until 1996. I mean even anti-phycotic drugs and any

new ones that was released. Which I'm sure some of that crap is

still in my system. I knew I did not have a mental problem I was

sick from implants. They had in in phyc hospitals and all. My

sister in law prayed for me all the time, she was so worried cause

she knew I was being mis-diag. Finally after 3 yrs of me just

staring when any one would talk to me, she came to me crying saying,

a you don't need those drugs. The Lord will be your drugs. It

hit me how these professionals actually dug up stuff in my past and

convienced me I was mentally ill. Now since 1996 I have not had

even anti-depressants. * " 96 I started realizing its implants).

Every time I feel depressed my husbanh reminds me how my condition

is making feel that way. It took him a year reminding constantly

its not depression. Thank God for Good Men.

a

[Guest guest]

a,

I'm so sorry you were treated so badly! . . . All

those years, lost to implants! . . . It's sad, it's

criminal, it's insane! When women get sick, they LOVE

to say it's a mental problem!

When is this government going to wake up?

Actually the worst is yet to come if the feds have

their way. Just a couple days ago, a news report said

the feds want to protect drug companies from injury

claims on all drugs that are FDA approved! Right now

laws vary by the state. We know how good the FDA

approval is!!

I'm so glad you found us a . . . For us as well as

you!

Hugs and prayers,

Rogene

[Guest guest]

Ladies,

I hope ALL of you prepare a letter to ALL the doctors

who have failed to diagnose your implant problems. . .

They need to be educated every bit as much as we do! .

.. . They see countless women who are as sick as you've

been. Since saline implants are FDA approved, they

really don't have a clue!

I'm afraid that, if they can't find the cause of ones

illness, they blame the patient!

God Bless,

Rogene