Re: Meds Helping?

February 10, 2002

I am just a lay person. I have CFS and have used many medications. My

experience with SSRIs has been pretty negative. I have never had any

side affects from Valtrex. My guess would be that the Paxil is causing

the irritability not the valtrex. Perhaps you could try different SSRIs

at different dosages. Or if that doesn't help try different

antidepressants. I am doing well on a tiny dose of amytriptiline at bed

time and a tiny dose of welbutrin in the am. I don't know if that would

be acceptable for a child. Talk to dr. Goldberg. I am just giving my

experience as an adult.

The experience that I have had on SSRIs is hyperactivity, irritability

and twitching jerking muscles. These are very uncomfortable. It must be

terrible for a child who doesn't know what is going on.

Talk to dr. Goldberg and good luck with your precious child.

Gail

debbie_warwick wrote:

> Hello Everyone:

>

> I need some advice and/or feedback. My son has been with Dr. G.

> since August 2001. At this point we're currently on Valtrex (3x's a

> day), Lamisil and Paxil (10mg 1/3 tablet once a day). It seems to me

> that since we started the Paxil in late December, things have not

> been progressing like I feel they should. My son has become so much

> more tactically defensive (literally pulling off his clothes and

> tantrumming when he has to wear certain pants that bother him). The

> thing that bothers me is that he never used to do this before.

>

> The other day when he received his morning dose of Valtrex he started

> crying and then biting his fingers (clearly becoming more hyper). I

> don't remember him reacting to the Valtrex like this when we first

> started in August, but could this be a combination effect due to the

> other meds (i.e. the paxil?).

>

> I hate to say this, but I can not honestly say that I've noticed an

> improvement in his with any of the meds so far....and what's even

> worse is that my husband is the one that stays at home with him and

> he's starting to say that he's not going to give him the medication

> anymore because it's making him worse...Help! I've explained the

> logic behind Dr. G's protocal, but of course all he knows is what he

> sees. Has anyone else had this kind of situation as far as the meds

> not helping? I have an appmt. with Dr. G on Monday, so we'll see

> what happens.

>

> Thanks

>

> Debbie

>

February 10, 2002

Hi Debbie,

You may want to ask Dr. G if you can try celexa over paxil. This may agree with

him better.

Just a suggestion.

Meds Helping?

Hello Everyone:

I need some advice and/or feedback. My son has been with Dr. G.

since August 2001. At this point we're currently on Valtrex (3x's a

day), Lamisil and Paxil (10mg 1/3 tablet once a day). It seems to me

that since we started the Paxil in late December, things have not

been progressing like I feel they should. My son has become so much

more tactically defensive (literally pulling off his clothes and

tantrumming when he has to wear certain pants that bother him). The

thing that bothers me is that he never used to do this before.

The other day when he received his morning dose of Valtrex he started

crying and then biting his fingers (clearly becoming more hyper). I

don't remember him reacting to the Valtrex like this when we first

started in August, but could this be a combination effect due to the

other meds (i.e. the paxil?).

I hate to say this, but I can not honestly say that I've noticed an

improvement in his with any of the meds so far....and what's even

worse is that my husband is the one that stays at home with him and

he's starting to say that he's not going to give him the medication

anymore because it's making him worse...Help! I've explained the

logic behind Dr. G's protocal, but of course all he knows is what he

sees. Has anyone else had this kind of situation as far as the meds

not helping? I have an appmt. with Dr. G on Monday, so we'll see

what happens.

Thanks

Debbie

February 10, 2002

Debbie:

How old is your child? The older they are the

longer their bodies have been in a dysfunctional

state, therefore the longer it will take to heal

them.

Stopping the meds is a big mistake. Did you

take a look at his/her blood test results? Did

you see the viral count? Our children are

diseased, therefore need to be medicated to

heal them.

My daughter is going to be 9 and has been on

Dr. Goldberg's protocol since March 2000 and

we have seen progress, very, very slow progress,

but unfortunately due to the years her body was

in this and continues to be in this dysfunctional

state, the longer it takes to heal. Also the meds

Dr. Goldberg uses is the best possible meds

available to him at this time. And by no means

are they the most sophicasted meds our children

need. Our children are diseased and our children

will continue to go through abnormal cycles as the

ones you describe in your Email, while their bodies

begin to heal. Unfortunately there is no quick cure,

not in this day and age. And all we hear from the

media, medical reports etc.. etc.. is latest technology

this and most latest technology breakthroughs on that.

It sickens me.

I heard a story last nite thru an acquaintance at a local

& NOble bookseller that his stepmom spent

$$22,000 to have her teeth whitened by the best cosmetic

dentist in NYC. Unfortunately our world focuses on issues

such as teeth, material possessions, etc.. etc.. NOT OUR

KIDS DISEASES LET ALONE OUR DISEASES...

IS THE ANSWER FOR ALOT OF DISEASES WE ARE FACED

WITH TODAY AND WILL CONTINUE TO BE FACED WITH

TOMORROW. And to just let you know his stepmom is now

suing this dentist because her teeth are too white. Is this

ironic? I wish we had those problems !?!?!

Sorry to go on and on.. but I am not well today due to my

Chronic Fatigue Syndrome, having a bad day and needed

to vent. Thanks for listening. Hang in there, Dr. Goldberg

is here for us and with the Grace of God maybe these immune

modulators will be marketed and will become available to us !!!!

If not, then our children will probably be on a maintenance

program forever and many children will grow into adults with

this condition and we will lose generations upon generations

of children who are not being medicated by Dr. Goldberg's

protocol plan.

Michele Davies

February 10, 2002

Hi Debbie,

These are all things that Dr. G. will have to help you sort out. There

could be one, or several things going on. I can throw out a few ideas if

that will help.

One thing to consider is diet. Even eating a problem food once a week can

keep them dysfunctional. Make sure he's not eating anything with milk,

butter, cheese, whey, etc. No whole wheat or other whole unprocessed

grains. Is there anything else that he's really sensitive to that's in his

diet?

Supplements- Is he taking any type of supplement? My son was reactive to

many supplements. I never even gave him a multi until after we had him

functioning.

Meds- All of the kids tolerate different meds. My boys never did well on

lamisil, other kids do. The SSRI's all have different effects. Celexa

works well for many, it was a disaster for us. My younger son did well on

Valtrex as long as I faithfully washed the blue dye off. He also does well

on Famvir.

Clothes- My younger son used to always pull his clothes off. He had alot

of sensory issues. The two things that were involved in this problem was

the fabric and what I washed his clothes in. What I ended up doing was

buying soft, 100% cotton and switched to natural, unscented laundry

products. Stuff like Tide, bounce, etc. can be overwhelming to someone with

sensory issues, and/or sensitivities. I can always tell when I sleep on

sheets washed in these products. I wake up with puffy red eyes and even

worse brain fog.

I don't know if any of this will help. I do know how frustrating it is when

we feel like progress isn't being made. Our children can be a challenge to

figure out. Sometimes it's a med, sometimes it's mistakes we make.

Personally, I didn't do the diet right in the beginning. It was because I

didn't see any obvious reaction. That's what makes this hard

sometimes...things aren't always obvious. We do a change here, a change

there, and we figure it out.

Cheryl

>From: " debbie_warwick " <debwarwick@...>

>Reply-

>

>Subject: Meds Helping?

>Date: Sat, 09 Feb 2002 17:36:29 -0000

>

>Hello Everyone:

>

>I need some advice and/or feedback. My son has been with Dr. G.

>since August 2001. At this point we're currently on Valtrex (3x's a

>day), Lamisil and Paxil (10mg 1/3 tablet once a day). It seems to me

>that since we started the Paxil in late December, things have not

>been progressing like I feel they should. My son has become so much

>more tactically defensive (literally pulling off his clothes and

>tantrumming when he has to wear certain pants that bother him). The

>thing that bothers me is that he never used to do this before.

>

>The other day when he received his morning dose of Valtrex he started

>crying and then biting his fingers (clearly becoming more hyper). I

>don't remember him reacting to the Valtrex like this when we first

>started in August, but could this be a combination effect due to the

>other meds (i.e. the paxil?).

>

>I hate to say this, but I can not honestly say that I've noticed an

>improvement in his with any of the meds so far....and what's even

>worse is that my husband is the one that stays at home with him and

>he's starting to say that he's not going to give him the medication

>anymore because it's making him worse...Help! I've explained the

>logic behind Dr. G's protocal, but of course all he knows is what he

>sees. Has anyone else had this kind of situation as far as the meds

>not helping? I have an appmt. with Dr. G on Monday, so we'll see

>what happens.

>

>Thanks

>

>Debbie

>

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February 11, 2002

Like anything else, some kids respond and others dont. Its important to

give it a fair chance.

We were with Dr G. for 1 year with no notable improvement that I could

specifically relate to the protocol. The best thing we found out was his

gluten/cassein sensitivity. after removing from his diet we noticed a

marked improvement in hyperness and negative affect. Through out the year

our son made some good progress overall and also had some rough times. I

cannot honestly say it anything was attributable to the meds in our case.

Since we noticed a plataue in his progress, I took him off all meds after a

year of being with Dr G. Again there was hardly a difference. Other than

anecdotal reports (which are valuable), I have not seen a systematic study

of the protocol showing the efficacy of treatment. In our case, we

could not weed out the effects of over the ABA, the daily 1 to 1, or

just the normal maturation. Our son has had his moments of progress and

upsets both on and off the " protocol " . There certainly is something to

as a theoretical mode but like any other treatment approach, we do not know

who responds best. Until this is investigated its still hit or miss.

At 05:36 PM 2/9/02 +0000, you wrote: