medications

[Guest guest]

We started our son on Zoloft at 5 years old (yes, we were for it

because he was so miserable and we had been around the block many

times by then). He is 12 now. He was much better within days and

nothing does what it does. I am glad there are medicines for those

that need them.

.

>>>>What an absolute joke... Prozac for a 3 year old. I felt pretty

> bad taking Prozac for the first time at 34 years old.

[Guest guest]

Amen, . I'll tell any parent to try diets, supps, and behavior

mod first. But, if after all other areas have been exhausted,

consider meds. They are wonderful for those who really need them.

Paxil has given Allie a shot at having a life.

Debi

> We started our son on Zoloft at 5 years old (yes, we were for it

> because he was so miserable and we had been around the block many

> times by then). He is 12 now. He was much better within days and

> nothing does what it does. I am glad there are medicines for those

> that need them.

>

> .

>

>

[Guest guest]

Seems like the issue is to stop emoting and start realizing that there

isn't anything magic about drugs or supplements. There are a real

whole lot of them, most of them make any given person worse, a few make

a given person better, and the real issue is to figure out what each

person needs so they feel good.

Sometimes it's a drug, sometimes it's a nutritional supplement. There

isn't any magic difference - the distinction is legal, not techncial.

Andy. . . . . . . .. . . . . .

>Paxil *is* a miracle drug for our three yr old. We gave it to her

>after a year of ABA/diet/supps with dramatically wonderful results.

Debi

> We started our son on Zoloft at 5 years old (yes, we were for it

> because he was so miserable and we had been around the block many

> times by then). He is 12 now. He was much better within days and

> nothing does what it does. I am glad there are medicines for those

> that need them.

>

> .

>

>

> >>>>What an absolute joke... Prozac for a 3 year old. I felt pretty

> > bad taking Prozac for the first time at 34 years old.

[Guest guest]

What kind of changes did you see with the medication? Kristy

On Tuesday, March 23, 2004, at 10:31 PM, Debi wrote:

> Amen, . I'll tell any parent to try diets, supps, and behavior

> mod first. But, if after all other areas have been exhausted,

> consider meds. They are wonderful for those who really need them.

> Paxil has given Allie a shot at having a life.

>

> Debi

>

>

>> We started our son on Zoloft at 5 years old (yes, we were for it

>> because he was so miserable and we had been around the block many

>> times by then). He is 12 now. He was much better within days and

>> nothing does what it does. I am glad there are medicines for those

>> that need them.

>>

>> .

>>

>>

>

>

>

>

> =======================================================

>

[Guest guest]

One example was us trying to ride trikes for extra OT. We had to

walk past the car to get the trikes. Allie would OCD on passing the

car as meaning we *had* to get in the car and go somewhere. Most of

the time I tried to get her to walk past it, she would throw herself

on the pavement and scream for 20 min *at least*. Within two days of

beginning the med she walked past the car with only the slightest

hesitation, got happily on her trike and began peddling with her big

sister down the street.

Another example was trying to get her to sit on the swing on the

swingset. I would try holding her on the seat, bearhugging her on

the seat, etc. It would elicit shreiks of protest and hitting and

kicking as if I were trying to murder her. There was no way to keep

her little body in that seat. Within a couple of days of the med,

she looked up at the swing, walked to it and sat down and asked

for " swing " and let me push her gently.

I remember just prior to starting the med she spent most of her time

lying in a fetal position on the floor, as if the world around her

was just too much. This was after a wonderful period following

implementation of diet and supps. She also began doing things like

trying to open doors and other minor feats of proprioception. She

stopped tantruming all the time and changes that would have been

unbearable (for her) prior to the med, became moments she could

protest but be able to get herself past enough to deal with life.

She became a little more bearable and began progressing in her ABA

therapy, after a six month regression that had followed after great

progress.

The only side effects from the med that I have seen is that she

began sleeping through most nights and stopped masturbating all the

time.

Debi

> What kind of changes did you see with the medication? Kristy

>

[Guest guest]

:

It's good to hear that the antibiotics seem to be working for you. I hope

and pray that long-term you have the benefits you are looking for.

I go to the Rheumy tomorrow and have a huge list of questions. One of

which is about my meds. I am on a large number of meds....and am

the point where I don't know what's a side effect or what's a symptom

anymore. I would love to be on less meds, but don't know if that will

work for me.

All the best,

> When I was diagnosed with RA, I immediately began a search online

to see what information I could find. As many of you probably know,

there's a ton of information available and much of it is redundant. The

lists of symptoms, the treatments, the medications and their possible

side effects were mostly the same from website to website.

>

> Most of the sites you come across list all the typical RA drugs -

methotrexate and the rest of them. But I also looked into the use of

antibiotics to combat the effects of RA and I chose to go that way

instead of the more toxic drugs. I read all the information I could find on

the treatment of RA with antibiotics.

>

> I'm 46 years old. I could feasibly live to 70 or 80. I don't want to try

to take toxic drugs for 30 years. When you read the potential side

effects on most of those drugs, it's downright scary! I couldn't imagine

taking them for all those years. So I chose to go with the antibiotic

protocol, even though it is not as well known nor does it work as quickly

as some of the other drugs. But long term prognosis was SO much

better. I went to the rheumatic.org website and read up on it, and even

talked with a number of people who were on the antibiotic protocol and

after years were basically symptom-free and maintained on only a low

dosage of antibiotic (three times a week, with NO other drugs). I even

found a website that gave statistics on the use of different drugs -

http://remedyfind.com/sym.asp?id=66 . These are ratings given by

people actually using the treatments. Antibiotic therapy is listed with

the highest rating.

>

> When first diagnosed, I went on methotrexate and plaquenil, but

dropped the plaquenil a few days later and started on doxycycline

(antibiotic). I went into a Herxheimer's reaction a couple of weeks in,

which is typical and also indicated to me that the antibiotics were

working. I know in some ways it doesn't make sense that you get

worse before you get better, but it often happens with this therapy. I

later dropped the methotrexate as the combination of antibiotic and mtx

work against each other, and I chose to go back on the plaquenil for

awhile to help retard any damage to my joints while the antibiotics did

their job. I also went on prednisone after a couple of months as I still

had considerable inflammation and the antibiotic has a harder time

working on really inflamed joints.

>

> I truly believe in the antibiotic protocol and have found that the people

following the AP tend to be in better shape, happier and more positive

than those on the traditional medications. I'm at the point where I take

prednisone every other day now (low dose), doxycycline once a day

and plaquenil - although I have cut back on that and will be stopping it

soon, I think. I rarely take any kind of pain meds now. I do have some

pain daily, but the huge swellings in my joints have reduced

considerably (I had really big lumps on my knees and my ankles and

feet were badly swollen). I still get puffy joints in my hands and they're

stiff at times, but nothing like they used to be. A few months back I

was nearly bedridden, barely able to walk and on constant pain meds

(oxycodone) just to function.

>

> I can work relatively comfortably now, and I walk to the lodge at least

once a day. I can train my dogs and even made it to a dog show a

week or so ago - driving 400 miles r/t and showing dogs in two different

classes for three days. I'll admit I was sore and tired, but I could do it!

I might feel better if I took a bunch more drugs, but the long term side

effects aren't worth it to me at this point and I have high hopes that the

antibiotics will continue to help to the point where I will be in remission.

The one drawback I've found to the use of antibiotics is that they take a

long time - a year or more - to fully work. I've been on this protocol for

six months now.

>

> I see so many people on this list talking about all the medications

they're on and many don't seem to be doing too good. I know it can be

hard to find a doctor (especially many rheumatologists) who are willing

to consider the antibiotic protocol. We have few rheumies in Alaska

and none in my area, so I took all of my research to my GP and she

chose to go along with the treatment I wanted (after she checked with

patients who had gone out to Mayo Clinic for treatment and found they

were all prescribed antibiotics). She's been really willing to work with

me, and I was willing to accept responsibility for my treatment (which I

gave her in writing, by my choice).

>

> Sometimes I think we have to be more proactive in our own choices

regarding our health. If what you're on isn't working, and your doctor

wants to prescribe more " big " drugs, you might want to look into some

alternative solution. I really don't think that the drugs they're wanting to

give us are good for us in the long run and can cause more problems

than they solve. This, of course, is my personal opinion.

>

> in Alaska

>

>

>

[Guest guest]

:

It's good to hear that the antibiotics seem to be working for you. I hope

and pray that long-term you have the benefits you are looking for.

I go to the Rheumy tomorrow and have a huge list of questions. One of

which is about my meds. I am on a large number of meds....and am

the point where I don't know what's a side effect or what's a symptom

anymore. I would love to be on less meds, but don't know if that will

work for me.

All the best,

> When I was diagnosed with RA, I immediately began a search online

to see what information I could find. As many of you probably know,

there's a ton of information available and much of it is redundant. The

lists of symptoms, the treatments, the medications and their possible

side effects were mostly the same from website to website.

>

> Most of the sites you come across list all the typical RA drugs -

methotrexate and the rest of them. But I also looked into the use of

antibiotics to combat the effects of RA and I chose to go that way

instead of the more toxic drugs. I read all the information I could find on

the treatment of RA with antibiotics.

>

> I'm 46 years old. I could feasibly live to 70 or 80. I don't want to try

to take toxic drugs for 30 years. When you read the potential side

effects on most of those drugs, it's downright scary! I couldn't imagine

taking them for all those years. So I chose to go with the antibiotic

protocol, even though it is not as well known nor does it work as quickly

as some of the other drugs. But long term prognosis was SO much

better. I went to the rheumatic.org website and read up on it, and even

talked with a number of people who were on the antibiotic protocol and

after years were basically symptom-free and maintained on only a low

dosage of antibiotic (three times a week, with NO other drugs). I even

found a website that gave statistics on the use of different drugs -

http://remedyfind.com/sym.asp?id=66 . These are ratings given by

people actually using the treatments. Antibiotic therapy is listed with

the highest rating.

>

> When first diagnosed, I went on methotrexate and plaquenil, but

dropped the plaquenil a few days later and started on doxycycline

(antibiotic). I went into a Herxheimer's reaction a couple of weeks in,

which is typical and also indicated to me that the antibiotics were

working. I know in some ways it doesn't make sense that you get

worse before you get better, but it often happens with this therapy. I

later dropped the methotrexate as the combination of antibiotic and mtx

work against each other, and I chose to go back on the plaquenil for

awhile to help retard any damage to my joints while the antibiotics did

their job. I also went on prednisone after a couple of months as I still

had considerable inflammation and the antibiotic has a harder time

working on really inflamed joints.

>

> I truly believe in the antibiotic protocol and have found that the people

following the AP tend to be in better shape, happier and more positive

than those on the traditional medications. I'm at the point where I take

prednisone every other day now (low dose), doxycycline once a day

and plaquenil - although I have cut back on that and will be stopping it

soon, I think. I rarely take any kind of pain meds now. I do have some

pain daily, but the huge swellings in my joints have reduced

considerably (I had really big lumps on my knees and my ankles and

feet were badly swollen). I still get puffy joints in my hands and they're

stiff at times, but nothing like they used to be. A few months back I

was nearly bedridden, barely able to walk and on constant pain meds

(oxycodone) just to function.

>

> I can work relatively comfortably now, and I walk to the lodge at least

once a day. I can train my dogs and even made it to a dog show a

week or so ago - driving 400 miles r/t and showing dogs in two different

classes for three days. I'll admit I was sore and tired, but I could do it!

I might feel better if I took a bunch more drugs, but the long term side

effects aren't worth it to me at this point and I have high hopes that the

antibiotics will continue to help to the point where I will be in remission.

The one drawback I've found to the use of antibiotics is that they take a

long time - a year or more - to fully work. I've been on this protocol for

six months now.

>

> I see so many people on this list talking about all the medications

they're on and many don't seem to be doing too good. I know it can be

hard to find a doctor (especially many rheumatologists) who are willing

to consider the antibiotic protocol. We have few rheumies in Alaska

and none in my area, so I took all of my research to my GP and she

chose to go along with the treatment I wanted (after she checked with

patients who had gone out to Mayo Clinic for treatment and found they

were all prescribed antibiotics). She's been really willing to work with

me, and I was willing to accept responsibility for my treatment (which I

gave her in writing, by my choice).

>

> Sometimes I think we have to be more proactive in our own choices

regarding our health. If what you're on isn't working, and your doctor

wants to prescribe more " big " drugs, you might want to look into some

alternative solution. I really don't think that the drugs they're wanting to

give us are good for us in the long run and can cause more problems

than they solve. This, of course, is my personal opinion.

>

> in Alaska

>

>

>

[Guest guest]

:

Your post is thoughtful and informative. Thank you for sharing. I always

like to have as much info as I can. If the truth be told, I MUCH PREFER the

gentle route you are taking with your medical care, however, I am just a bit

if a chicken, in that I worry about the long-term joint damage. Anyhow, you

have given me something to reconsider -- thank you.

Love and Prayers,

Beth

[Guest guest]

:

Your post is thoughtful and informative. Thank you for sharing. I always

like to have as much info as I can. If the truth be told, I MUCH PREFER the

gentle route you are taking with your medical care, however, I am just a bit

if a chicken, in that I worry about the long-term joint damage. Anyhow, you

have given me something to reconsider -- thank you.

Love and Prayers,

Beth

[Guest guest]

,

I wish every newly diagnosed person was started on antibiotics since it

is most effective in the early stages of the disease.

You're right about it being hard to find a doctor that will prescribe

antibiotics, and many of those that do are only doing it to appease

their patients, not because they believe it it's effectiveness. I

believe this attitude will change since there is so much information

and even now the Arthritis Foundation lists and recognizes antibiotics

as a treatment option, although it is not approved for that purpose.

If I didn't have such longstanding arthritis, I would surely try it.

I'm very happy that you've found something that works for you.

a

On Aug 16, 2005, at 9:17 PM, wrote:

> When I was diagnosed with RA, I immediately began a search online to

> see what information I could find.  As many of you probably know,

> there's a ton of information available and much of it is redundant. 

> The lists of symptoms, the treatments, the medications and their

> possible side effects were mostly the same from website to website.

>

> Most of the sites you come across list all the typical RA drugs -

> methotrexate and the rest of them.  But I also looked into the use of

> antibiotics to combat the effects of RA and I chose to go that way

> instead of the more toxic drugs.  I read all the information I could

> find on the treatment of RA with antibiotics.

>

> I'm 46 years old.  I could feasibly live to 70 or 80.  I don't want

> to try to take toxic drugs for 30 years.  When you read the potential

> side effects on most of those drugs, it's downright scary!  I couldn't

> imagine taking them for all those years.  So I chose to go with the

> antibiotic protocol, even though it is not as well known nor does it

> work as quickly as some of the other drugs.  But long term prognosis

> was SO much better.   I went to the rheumatic.org website and read up

> on it, and even talked with a number of people who were on the

> antibiotic protocol and after years were basically symptom-free and

> maintained on only a low dosage of antibiotic (three times a week,

> with NO other drugs).  I even found a website that gave statistics on

> the use of different drugs - http://remedyfind.com/sym.asp?id=66 . 

> These are ratings given by people actually using the treatments. 

> Antibi

> When first diagnosed, I went on methotrexate and plaquenil, but

> dropped the plaquenil a few days later and started on doxycycline

> (antibiotic).  I went into a Herxheimer's reaction a couple of weeks

> in, which is typical and also indicated to me that the antibiotics

> were working.  I know in some ways it doesn't make sense that you get

> worse before you get better, but it often happens with this therapy. 

> I later dropped the methotrexate as the combination of antibiotic and

> mtx work against each other, and I chose to go back on the plaquenil

> for awhile to help retard any damage to my joints while the

> antibiotics did their job.  I also went on prednisone after a couple

> of months as I still had considerable inflammation and the antibiotic

> has a harder time working on really inflamed joints.

>

> I truly believe in the antibiotic protocol and have found that the

> people following the AP tend to be in better shape, happier and more

> positive than those on the traditional medications.  I'm at the point

> where I take prednisone every other day now (low dose), doxycycline

> once a day and plaquenil - although I have cut back on that and will

> be stopping it soon, I think.  I rarely take any kind of pain meds

> now.  I do have some pain daily, but the huge swellings in my joints

> have reduced considerably (I had really big lumps on my knees and my

> ankles and feet were badly swollen).  I still get puffy joints in my

> hands and they're stiff at times, but nothing like they used to be.  A

> few months back I was nearly bedridden, barely able to walk and on

> constant pain meds (oxycodone) just to function.

>

> I can work relatively comfortably now, and I walk to the lodge at

> least once a day.  I can train my dogs and even made it to a dog show

> a week or so ago - driving 400 miles r/t and showing dogs in two

> different classes for three days.  I'll admit I was sore and tired,

> but I could do it!  I might feel better if I took a bunch more drugs,

> but the long term side effects aren't worth it to me at this point and

> I have high hopes that the antibiotics will continue to help to the

> point where I will be in remission.  The one drawback I've found to

> the use of antibiotics is that they take a long time - a year or more

> - to fully work.  I've been on this protocol for six months now.

>

> I see so many people on this list talking about all the medications

> they're on and many don't seem to be doing too good.  I know it can be

> hard to find a doctor (especially many rheumatologists) who are

> willing to consider the antibiotic protocol.  We have few rheumies in

> Alaska and none in my area, so I took all of my research to my GP and

> she chose to go along with the treatment I wanted (after she checked

> with patients who had gone out to Mayo Clinic for treatment and found

> they were all prescribed antibiotics).  She's been really willing to

> work with me, and I was willing to accept responsibility for my

> treatment (which I gave her in writing, by my choice).

>

> Sometimes I think we have to be more proactive in our own choices

> regarding our health.  If what you're on isn't working, and your

> doctor wants to prescribe more " big " drugs, you might want to look

> into some alternative solution.  I really don't think that the drugs

> they're wanting to give us are good for us in the long run and can

> cause more problems than they solve.  This, of course, is my personal

> opinion.

>

> in Alaska

>

>

>

[Guest guest]

,

I wish every newly diagnosed person was started on antibiotics since it

is most effective in the early stages of the disease.

You're right about it being hard to find a doctor that will prescribe

antibiotics, and many of those that do are only doing it to appease

their patients, not because they believe it it's effectiveness. I

believe this attitude will change since there is so much information

and even now the Arthritis Foundation lists and recognizes antibiotics

as a treatment option, although it is not approved for that purpose.

If I didn't have such longstanding arthritis, I would surely try it.

I'm very happy that you've found something that works for you.

a

On Aug 16, 2005, at 9:17 PM, wrote:

> When I was diagnosed with RA, I immediately began a search online to

> see what information I could find.  As many of you probably know,

> there's a ton of information available and much of it is redundant. 

> The lists of symptoms, the treatments, the medications and their

> possible side effects were mostly the same from website to website.

>

> Most of the sites you come across list all the typical RA drugs -

> methotrexate and the rest of them.  But I also looked into the use of

> antibiotics to combat the effects of RA and I chose to go that way

> instead of the more toxic drugs.  I read all the information I could

> find on the treatment of RA with antibiotics.

>

> I'm 46 years old.  I could feasibly live to 70 or 80.  I don't want

> to try to take toxic drugs for 30 years.  When you read the potential

> side effects on most of those drugs, it's downright scary!  I couldn't

> imagine taking them for all those years.  So I chose to go with the

> antibiotic protocol, even though it is not as well known nor does it

> work as quickly as some of the other drugs.  But long term prognosis

> was SO much better.   I went to the rheumatic.org website and read up

> on it, and even talked with a number of people who were on the

> antibiotic protocol and after years were basically symptom-free and

> maintained on only a low dosage of antibiotic (three times a week,

> with NO other drugs).  I even found a website that gave statistics on

> the use of different drugs - http://remedyfind.com/sym.asp?id=66 . 

> These are ratings given by people actually using the treatments. 

> Antibi

> When first diagnosed, I went on methotrexate and plaquenil, but

> dropped the plaquenil a few days later and started on doxycycline

> (antibiotic).  I went into a Herxheimer's reaction a couple of weeks

> in, which is typical and also indicated to me that the antibiotics

> were working.  I know in some ways it doesn't make sense that you get

> worse before you get better, but it often happens with this therapy. 

> I later dropped the methotrexate as the combination of antibiotic and

> mtx work against each other, and I chose to go back on the plaquenil

> for awhile to help retard any damage to my joints while the

> antibiotics did their job.  I also went on prednisone after a couple

> of months as I still had considerable inflammation and the antibiotic

> has a harder time working on really inflamed joints.

>

> I truly believe in the antibiotic protocol and have found that the

> people following the AP tend to be in better shape, happier and more

> positive than those on the traditional medications.  I'm at the point

> where I take prednisone every other day now (low dose), doxycycline

> once a day and plaquenil - although I have cut back on that and will

> be stopping it soon, I think.  I rarely take any kind of pain meds

> now.  I do have some pain daily, but the huge swellings in my joints

> have reduced considerably (I had really big lumps on my knees and my

> ankles and feet were badly swollen).  I still get puffy joints in my

> hands and they're stiff at times, but nothing like they used to be.  A

> few months back I was nearly bedridden, barely able to walk and on

> constant pain meds (oxycodone) just to function.

>

> I can work relatively comfortably now, and I walk to the lodge at

> least once a day.  I can train my dogs and even made it to a dog show

> a week or so ago - driving 400 miles r/t and showing dogs in two

> different classes for three days.  I'll admit I was sore and tired,

> but I could do it!  I might feel better if I took a bunch more drugs,

> but the long term side effects aren't worth it to me at this point and

> I have high hopes that the antibiotics will continue to help to the

> point where I will be in remission.  The one drawback I've found to

> the use of antibiotics is that they take a long time - a year or more

> - to fully work.  I've been on this protocol for six months now.

>

> I see so many people on this list talking about all the medications

> they're on and many don't seem to be doing too good.  I know it can be

> hard to find a doctor (especially many rheumatologists) who are

> willing to consider the antibiotic protocol.  We have few rheumies in

> Alaska and none in my area, so I took all of my research to my GP and

> she chose to go along with the treatment I wanted (after she checked

> with patients who had gone out to Mayo Clinic for treatment and found

> they were all prescribed antibiotics).  She's been really willing to

> work with me, and I was willing to accept responsibility for my

> treatment (which I gave her in writing, by my choice).

>

> Sometimes I think we have to be more proactive in our own choices

> regarding our health.  If what you're on isn't working, and your

> doctor wants to prescribe more " big " drugs, you might want to look

> into some alternative solution.  I really don't think that the drugs

> they're wanting to give us are good for us in the long run and can

> cause more problems than they solve.  This, of course, is my personal

> opinion.

>

> in Alaska

>

>

>

[Guest guest]

, I found this very interesting, I too do not

want to take medications, although right now I am on a

lot, it is good to read about your experience and I

may consider it down the road, thanks for sharing

in MO

____________________________________________________

Start your day with - make it your home page

http://www./r/hs

[Guest guest]

, I found this very interesting, I too do not

want to take medications, although right now I am on a

lot, it is good to read about your experience and I

may consider it down the road, thanks for sharing

in MO

____________________________________________________

Start your day with - make it your home page

http://www./r/hs

[Guest guest]

Speaking of medications, I got a couple of calls from my Rummy's office

lately about results of my last blood tests. Now they want me to cut back on

my MTX. This is on top of trying Sulfasalazine and Arava, and having to stop

other meds with no provision for help as a result. I decided I had about

enough, so I stopped taking 3 meds and cut way back on the rest. I cut the

MTX in half, as with the Folic acid, but left the Prednesone as is. I'm not

cutting back on it. Anyhow, since the changes, I'm doing a LOT better. I

feel better for longer than I can remember. I also asked my GP to take over

my RA treatment but he refused, which is okay. It seems that all I need the

Rummy for is prescribing MTX. That's the only thing he's good for, it seems,

and with gas prices like they are, I can't afford to travel twice as far to

go to the one that was recommended to me by my GP. Oh yeah, I did get

results of the last 5 blood tests, so now I can have a better understanding

of my situation.

Once upon a time I had the address for blood test values and meanings but

I've apparently lost it. Will someone please send it to me? I'd certainly

appreciate it.

Dennis

Re: [ ] Medications

> , I found this very interesting, I too do not

> want to take medications, although right now I am on a

> lot, it is good to read about your experience and I

> may consider it down the road, thanks for sharing

> in MO

>

[Guest guest]

Speaking of medications, I got a couple of calls from my Rummy's office

lately about results of my last blood tests. Now they want me to cut back on

my MTX. This is on top of trying Sulfasalazine and Arava, and having to stop

other meds with no provision for help as a result. I decided I had about

enough, so I stopped taking 3 meds and cut way back on the rest. I cut the

MTX in half, as with the Folic acid, but left the Prednesone as is. I'm not

cutting back on it. Anyhow, since the changes, I'm doing a LOT better. I

feel better for longer than I can remember. I also asked my GP to take over

my RA treatment but he refused, which is okay. It seems that all I need the

Rummy for is prescribing MTX. That's the only thing he's good for, it seems,

and with gas prices like they are, I can't afford to travel twice as far to

go to the one that was recommended to me by my GP. Oh yeah, I did get

results of the last 5 blood tests, so now I can have a better understanding

of my situation.

Once upon a time I had the address for blood test values and meanings but

I've apparently lost it. Will someone please send it to me? I'd certainly

appreciate it.

Dennis

Re: [ ] Medications

> , I found this very interesting, I too do not

> want to take medications, although right now I am on a

> lot, it is good to read about your experience and I

> may consider it down the road, thanks for sharing

> in MO

>

[Guest guest]

Dennis,

Sorry you don't have a rheumy that you like and trust. Did he say why

he wanted to cut back on you mtx?

I'm glad you're feeling better.

I have a page on lab tests on my site:

http://rheumatoid.arthritis.freehosting.net/Lab%20Tests.html

The link to this site is at the bottom of every email for easy

reference.

a

On Aug 18, 2005, at 9:45 PM, Dennis W wrote:

> Speaking of medications, I got a couple of calls from my Rummy's office

> lately about results of my last blood tests. Now they want me to cut

> back on

> my MTX. This is on top of trying Sulfasalazine and Arava, and having

> to stop

> other meds with no provision for help as a result. I decided I had

> about

> enough, so I stopped taking 3 meds and cut way back on the rest. I

> cut the

> MTX in half, as with the Folic acid, but left the Prednesone as is.

> I'm not

> cutting back on it. Anyhow, since the changes, I'm doing a LOT

> better. I

> feel better for longer than I can remember. I also asked my GP to

> take over

> my RA treatment but he refused, which is okay. It seems that all I

> need the

> Rummy for is prescribing MTX. That's the only thing he's good for, it

> seems,

> and with gas prices like they are, I can't afford to travel twice as

> far to

> go to the one that was recommended to me by my GP. Oh yeah, I did get

> results of the last 5 blood tests, so now I can have a better

> understanding

> of my situation.

>

> Once upon a time I had the address for blood test values and meanings

> but

> I've apparently lost it. Will someone please send it to me? I'd

> certainly

> appreciate it.

>

> Dennis

[Guest guest]

Dennis,

Sorry you don't have a rheumy that you like and trust. Did he say why

he wanted to cut back on you mtx?

I'm glad you're feeling better.

I have a page on lab tests on my site:

http://rheumatoid.arthritis.freehosting.net/Lab%20Tests.html

The link to this site is at the bottom of every email for easy

reference.

a

On Aug 18, 2005, at 9:45 PM, Dennis W wrote:

> Speaking of medications, I got a couple of calls from my Rummy's office

> lately about results of my last blood tests. Now they want me to cut

> back on

> my MTX. This is on top of trying Sulfasalazine and Arava, and having

> to stop

> other meds with no provision for help as a result. I decided I had

> about

> enough, so I stopped taking 3 meds and cut way back on the rest. I

> cut the

> MTX in half, as with the Folic acid, but left the Prednesone as is.

> I'm not

> cutting back on it. Anyhow, since the changes, I'm doing a LOT

> better. I

> feel better for longer than I can remember. I also asked my GP to

> take over

> my RA treatment but he refused, which is okay. It seems that all I

> need the

> Rummy for is prescribing MTX. That's the only thing he's good for, it

> seems,

> and with gas prices like they are, I can't afford to travel twice as

> far to

> go to the one that was recommended to me by my GP. Oh yeah, I did get

> results of the last 5 blood tests, so now I can have a better

> understanding

> of my situation.

>

> Once upon a time I had the address for blood test values and meanings

> but

> I've apparently lost it. Will someone please send it to me? I'd

> certainly

> appreciate it.

>

> Dennis

[Guest guest]

I never get answers, just demands to make the change unquestioned. That's

one thing that has me upset with them. This one was over 2 weeks after the

blood test, and i'd already talked to one nurse about it with no good info.

The last one that wanted me to cut the MTX promised to fax me the latest

test, so I gave her the number. The fax machine is still waiting...

My Creatinine level was 'high' so I had to stop one med, I forget which

right now. It was 1.3, and max 'normal' is 1.2. It didn't change for months,

but went down to 1.1 when I stopped taking the water pill for my BP. To me,

that's no reason for me to have been stopped from a med that probably was

helping. I've got studying to do.

Dennis

Re: [ ] Medications

> Dennis,

>

> Sorry you don't have a rheumy that you like and trust. Did he say why

> he wanted to cut back on you mtx?

> I'm glad you're feeling better.

>

> I have a page on lab tests on my site:

>

> http://rheumatoid.arthritis.freehosting.net/Lab%20Tests.html

>

> The link to this site is at the bottom of every email for easy

> reference.

>

> a

>

>

>

> On Aug 18, 2005, at 9:45 PM, Dennis W wrote:

>

>> Speaking of medications, I got a couple of calls from my Rummy's office

>> lately about results of my last blood tests. Now they want me to cut

>> back on

>> my MTX. This is on top of trying Sulfasalazine and Arava, and having

>> to stop

>> other meds with no provision for help as a result. I decided I had

>> about

>> enough, so I stopped taking 3 meds and cut way back on the rest. I

>> cut the

>> MTX in half, as with the Folic acid, but left the Prednesone as is.

>> I'm not

>> cutting back on it. Anyhow, since the changes, I'm doing a LOT

>> better. I

>> feel better for longer than I can remember. I also asked my GP to

>> take over

>> my RA treatment but he refused, which is okay. It seems that all I

>> need the

>> Rummy for is prescribing MTX. That's the only thing he's good for, it

>> seems,

>> and with gas prices like they are, I can't afford to travel twice as

>> far to

>> go to the one that was recommended to me by my GP. Oh yeah, I did get

>> results of the last 5 blood tests, so now I can have a better

>> understanding

>> of my situation.

>>

>> Once upon a time I had the address for blood test values and meanings

>> but

>> I've apparently lost it. Will someone please send it to me? I'd

>> certainly

>> appreciate it.

>>

>> Dennis

[Guest guest]

I never get answers, just demands to make the change unquestioned. That's

one thing that has me upset with them. This one was over 2 weeks after the

blood test, and i'd already talked to one nurse about it with no good info.

The last one that wanted me to cut the MTX promised to fax me the latest

test, so I gave her the number. The fax machine is still waiting...

My Creatinine level was 'high' so I had to stop one med, I forget which

right now. It was 1.3, and max 'normal' is 1.2. It didn't change for months,

but went down to 1.1 when I stopped taking the water pill for my BP. To me,

that's no reason for me to have been stopped from a med that probably was

helping. I've got studying to do.

Dennis

Re: [ ] Medications

> Dennis,

>

> Sorry you don't have a rheumy that you like and trust. Did he say why

> he wanted to cut back on you mtx?

> I'm glad you're feeling better.

>

> I have a page on lab tests on my site:

>

> http://rheumatoid.arthritis.freehosting.net/Lab%20Tests.html

>

> The link to this site is at the bottom of every email for easy

> reference.

>

> a

>

>

>

> On Aug 18, 2005, at 9:45 PM, Dennis W wrote:

>

>> Speaking of medications, I got a couple of calls from my Rummy's office

>> lately about results of my last blood tests. Now they want me to cut

>> back on

>> my MTX. This is on top of trying Sulfasalazine and Arava, and having

>> to stop

>> other meds with no provision for help as a result. I decided I had

>> about

>> enough, so I stopped taking 3 meds and cut way back on the rest. I

>> cut the

>> MTX in half, as with the Folic acid, but left the Prednesone as is.

>> I'm not

>> cutting back on it. Anyhow, since the changes, I'm doing a LOT

>> better. I

>> feel better for longer than I can remember. I also asked my GP to

>> take over

>> my RA treatment but he refused, which is okay. It seems that all I

>> need the

>> Rummy for is prescribing MTX. That's the only thing he's good for, it

>> seems,

>> and with gas prices like they are, I can't afford to travel twice as

>> far to

>> go to the one that was recommended to me by my GP. Oh yeah, I did get

>> results of the last 5 blood tests, so now I can have a better

>> understanding

>> of my situation.

>>

>> Once upon a time I had the address for blood test values and meanings

>> but

>> I've apparently lost it. Will someone please send it to me? I'd

>> certainly

>> appreciate it.

>>

>> Dennis

[Guest guest]

In this house, we wouldn't have much of a life without 'em. But that

has to do with the fact that has inherited my tendency to

depression, rather than his Asperger's. He also takes Strattera for

ADD. We're still trying to get his meds exactly right. The question to

ask, I think, is is he better off with them or without them? Is he

happier or more functional, or not? Are there side effects? I've been

on psych meds for 20 years, due to bipolar disorder, and will

undoubtedly be on them for the rest of my life. As my doctor says, " Any

medication can cause any side effect. " I'm well monitored by my

psychiatrist and by my ophthalmologist (because some potential side

effects involve the eyes). Anyway, that's our experience.

Liz

On Apr 21, 2006, at 7:29 AM, wrote:

>

>

> Thanks for the support; I just spoke to my son last night!

>

> What a difference in him. In the last 2 weeks he really has made some

> changes. I know we are on the honeymoon with his behavior; however he

> seems

> happy for Brad! That is a big plus. He never seemed to be happy at

> home.

>

> I am wondering about medication. Right now Brad has been baselined.

> This

> is the first time since he was 6 years old that he is not on any

> medications. I am so pleased to see the REAL Brad. However they are

> making

> sounds that they might want to start some medications. Brad also has

> OCD

> tendencies, but I am worried about long range ramifications of all the

> medications that he has been on.

>

> What are the thoughts out there on medications?

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

--- <etay58@...> wrote:

>

> What are the thoughts out there on medications?

>

>

Here we went through a gamut of medications from the

psychiatrist's idea of wonder drugs, I guess. He put

him on one, and it didn't work. The next one was the

difference in night and day! It was a wonder drug

until it leveled off in my son's body and when we

tried to up it, the nightmare began. The psych kept

throwing new drugs on us. It was awful. We decided

that we were not going to that psych anymore. Thus,

that meant no more meds. Where were were going next

had a waiting period for a psych. So our son was off

meds for about 2 months. He came back to us. Our son

was back after that (we were on the verge of

hospitalization!). We started with the knew psych who

placed him on Prozac (5 mg) and it was good. He is now

on 15mg of Prozac and has been for over a year and

life has been good! This was for his OCD tendencies.

There are still outburts now and then, but NOTHING

like before. He's a good kid now! Very tolerable and a

typical teenager. Even has a girlfriend now-which I

NEVER thought was possible for him!!!!!

But I don't know what we'd do without the meds. Since

he's been so stable for so long, the psych wants to

see about taking him off them for the summer. My

husband and I aren't too thrilled about that. I may go

for cutting it back, which I guess we've kind of done

because it hasn't been adjusted to weight in awhile,

so as he's grown, and put on more weight, he's

maintained the same dosage. So he may be weaning

himself back naturally. But it's all been good. Before

was really a nightmare when we were switching and

switching and I was concerned about what it was doing

to his brain. Now we appear to be on what he needed

and doing well.

Melinda

Mom to 13, AS, ADHD, OCD

Casey 11 going on 15!!!!!!! AAAAAHHHH!!!

5, speech delay and very independent!

And a new one on the way in DECEMBER!!Surprise!

[Guest guest]

> What are the thoughts out there on medications?

>

>

Well, for our family medication has been a big help. My son is 11 with

aspergers. He

began taking ritalin and depecote at 6 to help with behavior. The doctors were

convinced

he had ADHD and intermittent explosive disorder at that time. I did not agree

with

either dx, but the medication made my son so much easier to live with that I

didn't take

him off the drugs. I figured that even if he didn't have those illnesses, the

medicine

was helping those behaviors. Then he got the asperger dx at 8 and the other

labels were

dropped off. Currently he takes ritalin and paxil. His behavoir imporved so

much, we

took him off the depecote. The ritalin helps him to maintain his focus and

control his

impluses. The paxil has really changed his attitude. I remember shortly after

he

started using it about 2 years ago, I heard him laugh for the first time I

think. It was

incredible.

We consider his medications every year because I don't like him taking so much

at such a

young age. Every year we pick one normal week and we wean him off one drug at a

time and

watch his behvior. If he struggles, we put him back on the medication. We

don't want

him to stress out so much if he doesn't have too.

I have nosy in-laws that hate how much medication he takes. But they also think

that my

son acts the way he does because he is spoiled. Ha! They seem to think that I

put him

on medication because I cannot handle him and if I just punished him more, he

would be a

better boy. Anyone else have that problem?

Have a great day,

LaRae

[Guest guest]

LaRae,

I had to laugh, because I had teachers tell me that I just needed to have a

man in the house to give Brad a beating or 2 and then he would behave

himself. If these people only knew what it is like to live everyday, with

an AS child!

I did not hit or punish my child just to make someone else happy. However I

have been known to leave stores and restaurants because of behavior that I

did not feel was appropriate for the setting. I have had others mothers

tell me to spank him, punish him, and/or I needed to be reported to Children

and Families. This was done on more than 1 occasion, just because I refused

to allow my son to get out of control in a public setting.

I am tired of explaining myself to others concerning my child. I work very

hard to be a good mom, and I no longer take abuse from outsiders (those who

think they have the answers and those who do not) I just look those folks

in the eye and tell them that my child has AS and he can not handle the fact

that THEY are butting into my parenting skills. Thank you. and I walk

away.

I love my son!

_____

From:

[mailto: ] On Behalf Of satari

Sent: Friday, April 21, 2006 2:08 PM

Subject: Re: ( ) Medications

> What are the thoughts out there on medications?

>

>

Well, for our family medication has been a big help. My son is 11 with

aspergers. He

began taking ritalin and depecote at 6 to help with behavior. The doctors

were convinced

he had ADHD and intermittent explosive disorder at that time. I did not

agree with

either dx, but the medication made my son so much easier to live with that I

didn't take

him off the drugs. I figured that even if he didn't have those illnesses,

the medicine

was helping those behaviors. Then he got the asperger dx at 8 and the other

labels were

dropped off. Currently he takes ritalin and paxil. His behavoir imporved

so much, we

took him off the depecote. The ritalin helps him to maintain his focus and

control his

impluses. The paxil has really changed his attitude. I remember shortly

after he

started using it about 2 years ago, I heard him laugh for the first time I

think. It was

incredible.

We consider his medications every year because I don't like him taking so

much at such a

young age. Every year we pick one normal week and we wean him off one drug

at a time and

watch his behvior. If he struggles, we put him back on the medication. We

don't want

him to stress out so much if he doesn't have too.

I have nosy in-laws that hate how much medication he takes. But they also

think that my

son acts the way he does because he is spoiled. Ha! They seem to think

that I put him

on medication because I cannot handle him and if I just punished him more,

he would be a

better boy. Anyone else have that problem?

Have a great day,

LaRae

[Guest guest]

If I had a dime for every time someone told me I needed to

" give my son a good ass whipping " , I could retire! My response now

is; " When you have done extensive research on AS and AS behavioral

issues , taken parenting classes, spent hours at a time keeping my

son in a physical hold so he cannot harm himself or others, stayed

with him through hours of crying himself to sleep because he has no

friends and feels like something is wrong with him and he doesn't

deserve to live, THEN and ONLY then, will I take any parenting

advice from you, and then, probably not! "

The audacity of some people that have no clue what we are dealing

with, and the heartache we go through seeing our kids suffer

and " lose control " ! Many of our kids have low self esteem as it is,

so lets knock them down a few more inches by " giving them a good ass

whipping " , when what they really need, is our understanding of what

their real needs are.

The ignorance is MADDENING!........I'm done now......till the next

time anyway.....there will always be opinionated idiots.\

Theresa

>

> LaRae,

>

> I had to laugh, because I had teachers tell me that I just needed

to have a

> man in the house to give Brad a beating or 2 and then he would

behave

> himself. If these people only knew what it is like to live

everyday, with

> an AS child!

>

> I did not hit or punish my child just to make someone else happy.

However I

> have been known to leave stores and restaurants because of

behavior that I

> did not feel was appropriate for the setting. I have had others

mothers

> tell me to spank him, punish him, and/or I needed to be reported

to Children

> and Families. This was done on more than 1 occasion, just because

I refused

> to allow my son to get out of control in a public setting.

>

> I am tired of explaining myself to others concerning my child. I

work very

> hard to be a good mom, and I no longer take abuse from outsiders

(those who

> think they have the answers and those who do not) I just look

those folks

> in the eye and tell them that my child has AS and he can not

handle the fact

> that THEY are butting into my parenting skills. Thank you. and I

walk

> away.

>

> I love my son!

>

>

>

>

>

> _____

>

> From:

> [mailto: ] On Behalf Of satari

> Sent: Friday, April 21, 2006 2:08 PM

>

> Subject: Re: ( ) Medications

>

>

>

> > What are the thoughts out there on medications?

> >

> >

>

>

> Well, for our family medication has been a big help. My son is 11

with

> aspergers. He

> began taking ritalin and depecote at 6 to help with behavior. The

doctors

> were convinced

> he had ADHD and intermittent explosive disorder at that time. I

did not

> agree with

> either dx, but the medication made my son so much easier to live

with that I

> didn't take

> him off the drugs. I figured that even if he didn't have those

illnesses,

> the medicine

> was helping those behaviors. Then he got the asperger dx at 8 and

the other

> labels were

> dropped off. Currently he takes ritalin and paxil. His behavoir

imporved

> so much, we

> took him off the depecote. The ritalin helps him to maintain his

focus and

> control his

> impluses. The paxil has really changed his attitude. I remember

shortly

> after he

> started using it about 2 years ago, I heard him laugh for the

first time I

> think. It was

> incredible.

> We consider his medications every year because I don't like him

taking so

> much at such a

> young age. Every year we pick one normal week and we wean him off

one drug

> at a time and

> watch his behvior. If he struggles, we put him back on the

medication. We

> don't want

> him to stress out so much if he doesn't have too.

> I have nosy in-laws that hate how much medication he takes. But

they also

> think that my

> son acts the way he does because he is spoiled. Ha! They seem to

think

> that I put him

> on medication because I cannot handle him and if I just punished

him more,

> he would be a

> better boy. Anyone else have that problem?

> Have a great day,

> LaRae

>

>

>

[Guest guest]

For us, medication has made a HUGE difference. It's definitely something

each family has to decide on their own though -- some kids don't have

good results, some parents opt for other things with success. For us,

biomed didn't help -- each thing we did rendered only a temporary

improvement, then he went downhill again after a few months, sometimes

worse than before. I've heard more than one person tell us that meds are

wrong and we just need to try biomed longer, harder, etc., but not

everyone realizes that biomed is not a perfect solution for every child.

(I do think highly of biomed though.) It took a week of several major

meltdowns for dh to admit that we needed to take the neuro's advice and

discuss medication. Ds is only on clonidine (he's also only recently 5)

so it's a mild med., but nonetheless, a med. He started it to lessen his

self-injurious behaviors, but it had the added bonus of helping him

sleep. He was waking 4-6-8-10x a night, and we were exhausted...and we

both work, and we have three other children, so our patience level was

spiraling downwards the more sleep-deprived we were. He was tired,

cranky, and I'm sure it exacerbates his behaviors. Anyway, fast forward

a month from the start of the clonidine, ahhh, peaceful sleep. He still

will wake sometimes, but not nearly as often and I know he feels better.

He still doesn't sleep long enough either, but I'll take the positive

steps forward any day, even if there are more to go. He will still hurt

himself, though the meds did make a change in the beginning, so I don't

know if we'll have to change the meds eventually, but we're trying to

work with him behaviorally (we have an in-home therapist that comes out

weekly) and we'll see how it goes.

>

> On Apr 21, 2006, at 7:29 AM, wrote:

>

>

>> Thanks for the support; I just spoke to my son last night!

>>

>> What a difference in him. In the last 2 weeks he really has made some

>> changes. I know we are on the honeymoon with his behavior; however he

>> seems

>> happy for Brad! That is a big plus. He never seemed to be happy at

>> home.

>>

>> I am wondering about medication. Right now Brad has been baselined.

>> This

>> is the first time since he was 6 years old that he is not on any

>> medications. I am so pleased to see the REAL Brad. However they are

>> making

>> sounds that they might want to start some medications. Brad also has

>> OCD

>> tendencies, but I am worried about long range ramifications of all the

>> medications that he has been on.

>>

>> What are the thoughts out there on medications?

>>

>>

>>

>>