meds

February 21, 2002

Celexa worked well for us. e-mail me personally for more info

Tina M. Hendrix

Cure2000@...

Vice-President, California Coalition

Neuro-Immune Dysfunction Syndromes

Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS,

etc.

February 26, 2002

Are you (your child) a patient of Dr G? Our son is on Celexa with marvelous

results.

Suzanne

From: " T. Medina " <mom2deux@...>

Reply-

nids

Subject: Meds

Date: Wed, 20 Feb 2002 17:35:46 -0800 (PST)

Hi,

Does anyone have experience with meds for treating

ADHD? Have tried Ritalin, Adderall and Clonidine (this

last with some effect), and was considering

Wellbutrin, so if anyone has experience with

Wellbutrin, positive or negative, could you please

share? We have also tried Prozac, Zoloft and Paxil

with the result being worse hyperactivity (wasn't

trying these for ADHD). Has anyone gone through this

many SSRI meds and finally found one that worked?

Thanks,

Teri

__________________________________________________

April 26, 2003

Terry I don't if this would help your daughter but PMT is gone in this house

since EFA's. I have been taking for 6 months and experimenting, its defintely

the EFA's. I am taking 7 Kirkman CLO caps and 2 EPO (50 GLA per cap). It sems

if I lower dose then symptoms (particularly emotional) come back to certain

degree. I strongly suspect I was very delpeted of EFA's, low fat dieting for

years and giving birth 3 times in less than 2.3 years in late 30's!

HTH

Mandi in UK

> My daughter is 14 and we have avoided meds for a long time. We have done 13

> rounds of chelation and plan to continue. However, with adolescence, we

> have had some very tough days, especially with PMS. She is often on edge.

> What medications have helped with adolescent girls?

>

April 26, 2003

In a message dated 4/26/2003 12:44:29 AM Eastern Daylight Time,

ramapa@... writes:

> My daughter is 14 and we have avoided meds for a long time. We have done 13

> rounds of chelation and plan to continue. However, with adolescence, we

> have had some very tough days, especially with PMS. She is often on edge.

> What medications have helped with adolescent girls?

>

> Thanks,

> Terry

>

Terry,

My daughters PMS has been helped tremendously with B complex vitamins and

magnesium. I am supplementing all the other suggested supplements for

chelation and have finished 49 rounds. Even several years ago when I spoke

to a mainstream OBGYN about her severe PMS this doctor said B vitamins and

magnesium. Now her alternative and DAN doctor has suggested progesterone

cream in addition, although we have decided against this for now.

Michele

and PS-- age 14 is hell anyway!!! I am so glad we are beyond it! Good luck

April 29, 2003

> My daughter is 14 and we have avoided meds for a long time. We have

done 13 rounds of chelation and plan to continue. However, with

adolescence, we have had some very tough days, especially with PMS.

She is often on edge. What medications have helped with adolescent

girls?

>

I recommend calcium for menstrual cramps (which I am positive

it is good for) --- I think it is also good for PMS, but I

have less experience with this. There are also a number

of herbal " formulas " available for PMS. (I know that

800-herbdoc has one, for example, or look at local HFS.)

best,

Moria

June 17, 2003

Somebody here has Trentham's email address, as I have emailed him in the

past. I'm sorry, I don't still have it. If I were you, I would email him and

ask

him directly why he puts AP as the third line of defense. He was very

responsive to my email and I'm not even his patient. Patrice, SLE.

June 18, 2003

In a message dated 6/17/2003 12:43:01 PM Pacific Daylight Time,

Suttonsurrey@... writes:

> I still do not know which is the best way to go.

Hi ,

I would have to say, if pain were not an issue, if pain were removed as a

symptom, which treatment would you choose? I am beginning to think some of the

rheumatic community out there is not getting the pain medications they deserve

as a human being to stop the suffering so you can make a rational choice

about which therapy seems right for you.

Then if you choose to support your immune system and make it strong, while

fighting the infection with antibiotics, speak to your doctor about

prescribing opiates like codeine for the pain until you can life without it.

The other thing is I would look and see where all the elderly people are

who have what you have. That was a decision maker for me, there are no old

people with AS I am aware of, although I hear of one or two, but their dead now

stories.

I am turning 54 this summer. I am not real old yet, but I have had 10

years of remission after 8 years of hell. Do your research? Make your choice,

and

lastly but not lastly, remember a woman's prerogative is to change her mind.

I have an open mind about new treatments, as long as they are life

supporting, meaning they are lending the body strength, not immune suppressing,

and

causing the body to weaken and in some cases for your hair to fall out.

Also do your homework. Here is a good link. <A

HREF= " http://news.google.com/ " >Google News</A>

Ann Pritchard

" Deep in the center of our beings

is an infinite wealth of love "

<A

HREF= " http://www.rheumatic.org/medhist.htm " >http://www.rheumatic.org/medhist.htm\

</A> < latest published work.

<A

HREF= " http://groups.msn.com/TyroMedia/pictures " >http://groups.msn.com/TyroMedia/\

pictures</A> < latest photos

<A HREF= " http://melungeon_music.tripod.com/melungeonmusic/ " >Melungeon Music</A>

< 's Web Site

July 27, 2003

Dear F

Im sorry, I didn't mean to offend anyone, and you are right. They are personal,

My apologies

Ingrid

Re: ( ) meds

Dear Ingrid, meds are very " personal " . each kid needs or does not need meds,

and among these who need - the meds are varied. the age at which we started

giving meds to our kids also varies.

so this is really you should discuss with your doctor, and AFTER some kind of

conclusion is drawn about the causes for his behaviour,

in our case, ds started getting Risperdal at age 10

mostly for helping him control his angry outbursts. it has helped.

F

July 27, 2003

Dear Ingrid, meds are very " personal " . each kid needs or does not need meds, and

among these who need - the meds are varied. the age at which we started giving

meds to our kids also varies.

so this is really you should discuss with your doctor, and AFTER some kind of

conclusion is drawn about the causes for his behaviour,

in our case, ds started getting Risperdal at age 10

mostly for helping him control his angry outbursts. it has helped.

F

March 24, 2004

June! I don't know, Noreen, that's so long. I'd call the rheumatologist

back and tell her what happened when you went off the minocycline - and

that you're thinking of staying off the minocycline.

Did you tell her how much pain you're in?

And you never know. If you try the MTX, you may not have any problems

with it.

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Meds

> First, hi to and other new members. I don't get in often

enough to

> welcome everyone, but I still feel like everyone is family.

>

> I've been on minocycline for 8 months or so, and haven't notice any

> improvement. My knees and ankles have gotten worse, and more knuckles

are

> sore.

>

> I talke to my rheumy, and she wants to see me before starting me on

either

> methotrexate or arava. Can't get in, until June, unless there is a

> cancellation, so she told me to stay on the minocycline until I can

get in.

>

> Meanwhile, I've been having problems at work with concentration,

dizziness,

> and inability to do normal things. I figured it was just part of the

RA, and

> live with it, but I felt like my head didn't belong to me anymore.

> Friday, I forgot to renew the minocycline, and was without it for the

> weekend. By Sunday, PM, I realized, my head felt normal again. I

checked

> the internet for minocycline symptoms, and guess what, dizziness,

> lightheadedness are side effects of minocycline. I didn't renew the

Rx, and

> feel so much better. OK, the pain is still there, but I can live with

that.

> I can't live with being ditzy!

>

> So until I can get on something else, I'll just stick with Naprosyn.

At

> least the pain is less with that.

> Boy, maybe getting diarrhea and losing my hair from methotrexate

wouldn't be

> the worst thing in the world.

> I do not want to feel like that again.

>

> Noreen

March 24, 2004

Problem is, she only comes up to my clinic once a month.

So unless I want to drive 4 hours to see her, I wait.

Noreen

ps GIna, I am only 6 hours away from Mayo, if it gets to that.

[ ] Meds

> First, hi to and other new members. I don't get in often

enough to

> welcome everyone, but I still feel like everyone is family.

>

> I've been on minocycline for 8 months or so, and haven't notice any

> improvement. My knees and ankles have gotten worse, and more knuckles

are

> sore.

>

> I talke to my rheumy, and she wants to see me before starting me on

either

> methotrexate or arava. Can't get in, until June, unless there is a

> cancellation, so she told me to stay on the minocycline until I can

get in.

>

> Meanwhile, I've been having problems at work with concentration,

dizziness,

> and inability to do normal things. I figured it was just part of the

RA, and

> live with it, but I felt like my head didn't belong to me anymore.

> Friday, I forgot to renew the minocycline, and was without it for the

> weekend. By Sunday, PM, I realized, my head felt normal again. I

checked

> the internet for minocycline symptoms, and guess what, dizziness,

> lightheadedness are side effects of minocycline. I didn't renew the

Rx, and

> feel so much better. OK, the pain is still there, but I can live with

that.

> I can't live with being ditzy!

>

> So until I can get on something else, I'll just stick with Naprosyn.

At

> least the pain is less with that.

> Boy, maybe getting diarrhea and losing my hair from methotrexate

wouldn't be

> the worst thing in the world.

> I do not want to feel like that again.

>

> Noreen

March 24, 2004

I was on methrotrexate and I never had diarhea or lost my hair.

However I did get ITP, which is a blood disease they thinik came

from the methotrexate. For me methotrexatewas a wonder drug, was the

only thing that took away the pain and made me feel alive again!

Unfortunatly I had a reaction to it, but there are many that have

great success with it.

-- In , " Noreen Saukko " <nsaukko@r...>

wrote:

> First, hi to and other new members. I don't get in often

enough to

> welcome everyone, but I still feel like everyone is family.

>

> I've been on minocycline for 8 months or so, and haven't notice any

> improvement. My knees and ankles have gotten worse, and more

knuckles are

> sore.

>

> I talke to my rheumy, and she wants to see me before starting me

on either

> methotrexate or arava. Can't get in, until June, unless there is a

> cancellation, so she told me to stay on the minocycline until I

can get in.

>

> Meanwhile, I've been having problems at work with concentration,

dizziness,

> and inability to do normal things. I figured it was just part of

the RA, and

> live with it, but I felt like my head didn't belong to me anymore.

> Friday, I forgot to renew the minocycline, and was without it for

the

> weekend. By Sunday, PM, I realized, my head felt normal again. I

checked

> the internet for minocycline symptoms, and guess what, dizziness,

> lightheadedness are side effects of minocycline. I didn't renew

the Rx, and

> feel so much better. OK, the pain is still there, but I can live

with that.

> I can't live with being ditzy!

>

> So until I can get on something else, I'll just stick with

Naprosyn. At

> least the pain is less with that.

> Boy, maybe getting diarrhea and losing my hair from methotrexate

wouldn't be

> the worst thing in the world.

> I do not want to feel like that again.

>

> Noreen

March 25, 2004

Well, the answer is clear then, Noreen, LOL!!!

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

Re: [ ] Meds

> Problem is, she only comes up to my clinic once a month.

> So unless I want to drive 4 hours to see her, I wait.

>

> Noreen

> ps GIna, I am only 6 hours away from Mayo, if it gets to that.

May 19, 2004

Good morning Kat,It sounds like you have a wonderful caring doctor, I

am so glad. Some doctors just don't take the time, or if you don't

have insurance, they don't won't to deal with it. It seems like he

is going the extra mile for you, wonderful! I am sure you can get

the patient assistance program through the Abbot company for Humira.

Have you checked out the site, www.humira.com it has a lot of

information, and helps with the assistance program. Let me know how

it goes, and I will keep you in my prayers, take care Tawny

> Hi Tawny,

> Thanks for welcoming me to the group. I have read lots of the posts

and yes there is some good

> information. I am on MTX pills. I went to the Rheumy Tuesday and he

uped my dose from 12.5mg

> to 25mg a week. He is also going to see if he can get Humira for me

since I don't have insurance or

> anyway of paying. He is already volunteering his time to me. I do

to a clinic here and the pay it based

> on your income and some doctors here where I live have started

volunteering their time to help

> people. I am so so thankful for that and I pray that he gets

Blessed for doing that for people like me.

> If he can get the Humira for me he is going to start out on one

injection twice a month. Thanks again

> for welcoming me into the group. I hope to get to know you and

others along the way. Take care and

> God Bless.

> Kat

September 29, 2004

I know exactly what you mean too. And on top of all that there is a

list of therapists and teachers you have to keep in check!

A few days ago I sat down and on this list did kind of a brain dump

on where I thought all of my son's deficits are right now. And it

really helped me to get organized in my mind. And then all of these

nice people reply and give you inspiration to go on. Then I feel

like I can focus on one aspect at a time.

I don't know if this will help...hang in there.

> Becky, I know exactly what you mean. The reports are

> so hard to do, because so many different factors come

> into play. I find myself saying to Dr. Goldberg, " he

> is better/worse, but then this is different, and this

> happened... " It is really hard. And then, med changes

> are based on this. It is really scarey. Barb

> > >

> > > Responsibility for the content of this message

> > lies strictly with

> > > the original author(s), and is not necessarily

> > endorsed by or the

> > > opinion of the Research Institute.

> > >

November 3, 2004

I can remember when my daughter was on many of these types of meds. I often

just wanted to take them all away and see what her base line was after

several years on them. This is ultimately what we did and she has been fine

ever since. Now on has been doing very well. I don't know how to

explain it, but I thought she'd never be able to be off Celexa and now she

is and is doing fine. I do think theres times when our kids need a

" vacation " from these drug to see their baseline.

Lynn

> Message: 1

> Date: Wed, 03 Nov 2004 14:52:30 -0000

> From: " atlantickayaker " <nancyballard@...>

> Subject: Help!!! Meds not right....

>

> I am very frustrated. We've been doing the protocal with Dr. G since

> 1999. We are still unable to nail down the right meds. At this

> point, I think Mike is overmedicated....I want to know if any of you

> have a child like mine, and see if some of these meds are similar.

>

> Mike, since onset after long illness, onset of autism symptoms, very

> hyperactive, sensory defensiveness is hyposensitive: craves deep

> pressure, tactile oral issues prefers crunchy, aversive to soft,

> mushy foods items, auditory processing is very poor, language

> limited due to auditory processing (knows 100's of words) just can't

> focus on oral language, unable to understand facial/body language is

> very literal. Extremely intelligent, normal/high iq, reads, writes,

> does well in math, but again total lack of communication skills,

> no common sense,

>

> Meds:

>

> Wellbutrin 2x daily

>

> Effexor (think this may be too high, 150mg...maybe this needs to go

> down)

>

> Prozac

>

> Tennex (think this is too high, socially withdrawn, too, too quiet,

> but he is doing all classwork, and is not bouncing off walls)

>

> Do any of you have a kid meeting this description? I am thinking

> that someone out there is like Mike, and would like to see how meds

> are. I think we are close, but we've changed meds so many times I

> don't know what else to look at.

>

> Any input you can provide is helpful

>

> ________________________________________________________________________

>

> Responsibility for the content of this message lies strictly with

> the original author(s), and is not necessarily endorsed by or the

> opinion of the Research Institute.

>

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

>

June 5, 2005

Susie, always good to hear about a doc getting fired. Maybe if physicians

felt a little more of those free market forces that other professionals feel

they'd refocus a greater share of their attention to where it belongs. Of

course I mean that in general, as I am very pleased with mine. Though in

the past several years I have fired my mechanic, optometrist, dentist,

cableguy, trashman, insurance agent, broker, banker, veterinarian, and

podiatrist all due to some degree of dissatisfaction with their performance.

Incredibly, none have since requested a second chance, except for the

cableguy. Guess he hasn't seen my dish though.

I did hear though (I have forgotten the numbers) that new interns are not

exactly fighting each other to become rheumatologists. Where other

specialties have consistently increased in numbers over the years,

rheumatology has supposedly fallen. So maybe that makes it all the more

difficult to find a good one in some areas.

Jeff

Jeff, Susie here. I totally agree with you. People are living longer,

quality of life is better for most, and since I have scleroderma, I

have to take blood pressure meds. I have been dx with sd for 5-6 years

and I'm thankful that my research doc is open on trying different

things. She is a firm believe in AP and Omega 3. I went to other

Rheumy's who basically gave me a death sentence and I fired them. I

was lucky to get to see Dr. at OMRF in OKC. She is so positive

and has helped me so much. At least now I see a future with

grandchildren, etc.

Something that I try to work on everyday is not becoming a cynical

person. It would be so easy to become a skeptic, be angry, have a pity

party (which I do ever so often). I try to laugh everyday, reach out

to others and try to find the good in things. I often wonder how

people in the past with sd handled it. Probably not too well....bless

their hearts.

Susie

August 27, 2005

Hi Marcia,

It is so good to hear from you! It has been a long time! We began with Dr. G

4.5 yrs ago and your responses helped me so much. I hope you are back to stay.

My son is 14 and has made great , gains,but is not close to recovery. On the

" three steps back " days, I need to hear the positive stories and pep talks you

and others on this list have to offer. Keep them coming!

Ellen

Meds

,

Every child is different and has different medical issues. My son took the

antifungals, SSRI and antivirals. Dr. G wanted us to do Kutapressin. We tried

it for a month and stopped. I didn't see any change and I was just not

comfortable with the daily injections. We never did Baygam. Hope that helps.

Marcia

September 28, 2005

> Barb,

> I had a problem with the insurance covering the ABA Specialist. I waited

> until was better to fight, but then I started writing the insurance

> company monthly. Still they refused to pay. I kept writing for about six

> months. I think they were hoping I would tire of the game and go away. Of

> course they never realized how stubborn I had to be to be 's mother.

> Finally, I hired a lawyer who felt I would not get reimbursed without

> legal action.. But I asked her to try and to write a letter for me. All

> it took was one letter from her that cost me fifty bucks. Soon I was

> reimbursed for all they didn't cover. It is worth a shot. Where are you

> located Barb? Maybe someone on the list has a suggestion on who you should

> contact. Or email me back and I will give you my attorney in Minnesota.

> It would probably be more effective if the attorney is from your state.

> Marcia

> Re: meds

>

>> Our bills were all coded as immune and neurological.

>> Yet our insurance refuses to pay for ssris, effexor,

>> welbutrin and strattera. We have been back and forth

>> with them for a year now. Dr. Goldberg and our office

>> have been helping us, but so far they will not budge.

>> Our policy has a ceiling of 4,000 per person for

>> anything psychological/behavioral. Just because these

>> meds are typically used for this, the ins. lumps them

>> in with this disorder. It is very frustrating.

>> Anyone have any suggestions? Any would be

>> appreciated. I'm wondering if we should contact a

>> lawyer, but I dread the thought of more legal bills.

>> We have our share of these already. Anyone know of a

>> really good lawyer who might take care of this quickly

>> for us?

>>

>> --- hindssite <hindssite@...> wrote:

>>

>>> The way the disease is billed determines what is

>>> covered. If it is immune issues, the meds should be

>>> covered. I have never had any problem getting my

>>> son's meds covered by blue cross blue shield

>>> Marcia Hinds

>>

>> Barb Katsaros

>> barbkatsaros@...

>>

>> __________________________________

>> - PC Magazine Editors' Choice 2005

>> http://mail.

>

October 10, 2005

My son is on Strattera, but also takes Adderall XR during the day. If

you have specific questions, I'd be happy to try and answer them.

Liz

On Oct 9, 2005, at 9:48 AM, jcooke36 wrote:

> My son has been taking strattara for about a month now. It makes him

> sleep well, but does not seem to help him at school. Any feed back on

> this drug would be much appreciated.

October 10, 2005

My son just recently had a very adverse reaction to it. He is on Ritalin

yet it wasn't managing his stress.. or.. anxiety.. so we were trying the

strattera. He had a complete meltdown and full blown anxiety attack one

week into the transition.

My stepson however is doing well on it.. yet there is a warning right now

on their website. Please check it out.. but don't panic. Just speak with

your physician on it .

-- ( ) meds

My son has been taking strattara for about a month now. It makes him

sleep well, but does not seem to help him at school. Any feed back on

this drug would be much appreciated.

October 18, 2005

Hi . They are saying Enbrel is effective for 5 years because

that is how long it has been approved for use. I've been on it for 5

years and it's still

effective for me. Hopefully by the time you're 50 they will have

found a cure for this dreaded disease!! I've had this disease for

close to 30 years and Enbrel has been the best med yet. Many people

that have responded to meds can lead a pretty normal life. If these

meds were available when I was young, maybe I wouldn't have so much

damage. I hope you have good luck with it. Stay positive. The mind

body connection is very strong.

a

On Oct 18, 2005, at 7:55 PM, jhawkot87 wrote:

> Hello all,

> I had my 3rd Rheumy visit last week. (diagnosed in July,

> started on

> Mtx, pred. and plaquenil). I have had to play around with my

> prednisone dosage and can't get it under 15 a day if I want to be able

> to walk. Still popping Ibu quite a bit also. Dr. said I'm not

> responding as well to the Mtx so he has now added Enbrel. In reading

> the info about Enbrel, I noticed it said it has been known to work up

> to 5 years. So, if I should be fortunate enough to have good results

> with Enbrel, I'm assuming it would only work for a limited time. Is

> this the case with all the meds? I'm 41 now, what's going to

> happen by

> the time i hit 50? It worries me. For those of you have been

> battling

> this for years, my heart goes out to you. I've only had RA since July

> and already am quite frustrated and concerned about my outlook in the

> long run. I feel like I shouldn't complain at all because I know so

> many of you have suffered much worse for a long time. But I'm already

> tired of it!!! lol. Consider this my first whining session. Any

> input you have about the meds would be appreciated. I know it varies

> from person to person and I'm trying to stay positive here. Take

> care,

> all.

> - NC

>

October 18, 2005