Re: Digest Number 284

September 30, 2000

No, I haven't used the internet to research CS. At this point, I'm more curious

about it than deeply motivated to learn more. I've been spending the last two

weeks or so researching MS docs in Chicago to identify a doctor and now it looks

like I'm going to need a new primary care physician as well.

As to the hyperbaric, no I have not looked into it. ly, I'm financially...

flat broke. I work full time during the day and part time in the evening just

trying to help my hubby keep us afloat. We can't afford any treatment which is

not covered by our insurance. Maybe in the future, that will change. For right

now, I have to deal with the budget constraints. Three months from now, one of

the major bills will be paid off, but I will be laid off from the full-time job.

Oh well, first things first. 1.) Get a new primary care physician. 2.) Get the

referral for the neuro (appointment is already set). 3.) See what kind of

treatment he has in mind. 4.) THEN continue research into alternative

treatment.

Gawd. Sometimes it seems so overwhelming! Is it any wonder I feel drained so

much of the time....

Gay

October 1, 2000

Hi Gay,

I am working on raising funds for MS and CP for treatments. I dont think

anyone should not be able to get treatments because of money. This is my

mission in life.

take care

kim

October 2, 2000

Gay,

I understand where you're coming from about the money for treatments etc. I've got the same problem, except I don't have a hubby! LOL

I really would be a good idea to do some researching on natural healing, diet etc. right away, because then you can avoid the doctors doing something that could be harmful to you in the long run. See the doctors, but don't think all they say is right for you. When I look back on my life, I wish I'd seen doctors less and ignored their medication recommendations.

Carol

No, I haven't used the internet to research CS. At this point, I'm more curious about it than deeply motivated to learn more. I've been spending the last two weeks or so researching MS docs in Chicago to identify a doctor and now it looks like I'm going to need a new primary care physician as well.As to the hyperbaric, no I have not looked into it. ly, I'm financially... flat broke. I work full time during the day and part time in the evening just trying to help my hubby keep us afloat. We can't afford any treatment which is not covered by our insurance. Maybe in the future, that will change. For right now, I have to deal with the budget constraints. Three months from now, one of the major bills will be paid off, but I will be laid off from the full-time job. Oh well, first things first. 1.) Get a new primary care physician. 2.) Get the referral for the neuro (appointment is already set). 3.) See what kind of treatment he has in mind. 4.) THEN continue research into alternative treatment.Gawd. Sometimes it seems so overwhelming! Is it any wonder I feel drained so much of the time....Gay.

October 3, 2000

carol,

good for you!

i found out trusting myself instead of my dx is a much better way

to take care of myself.

but, i'm glad i get their advice every so often but,

i do what feels right to me.

subi

>

>Reply-To: mscuredegroups

>To: <mscuredegroups>

>Subject: Re: Digest Number 284

>Date: Mon, 2 Oct 2000 11:31:02 -0700

>

>Gay,

>I understand where you're coming from about the money for treatments etc.

>I've got the same problem, except I don't have a hubby! LOL

>I really would be a good idea to do some researching on natural healing,

>diet etc. right away, because then you can avoid the doctors doing

>something that could be harmful to you in the long run. See the doctors,

>but don't think all they say is right for you. When I look back on my

>life, I wish I'd seen doctors less and ignored their medication

>recommendations.

>Carol

>

> No, I haven't used the internet to research CS. At this point, I'm more

>curious about it than deeply motivated to learn more. I've been spending

>the last two weeks or so researching MS docs in Chicago to identify a

>doctor and now it looks like I'm going to need a new primary care physician

>as well.

>

> As to the hyperbaric, no I have not looked into it. ly, I'm

>financially... flat broke. I work full time during the day and part time

>in the evening just trying to help my hubby keep us afloat. We can't

>afford any treatment which is not covered by our insurance. Maybe in the

>future, that will change. For right now, I have to deal with the budget

>constraints. Three months from now, one of the major bills will be paid

>off, but I will be laid off from the full-time job. Oh well, first things

>first. 1.) Get a new primary care physician. 2.) Get the referral for the

>neuro (appointment is already set). 3.) See what kind of treatment he has

>in mind. 4.) THEN continue research into alternative treatment.

>

> Gawd. Sometimes it seems so overwhelming! Is it any wonder I feel

>drained so much of the time....

>

> Gay

>

> .

>

October 3, 2000

I was on Betaseron for 2 years. I have talked to people that have not had any

problems but I certainly did. I started getting sores at injection sites but

before that there was a personality change that was not for the best. I was

so depressed and down when I got to a new Neurologist that he told me to stop

taking it immediately. After about a month I felt so different. It was like a

cloud lifted off me. I have scars on my tummy from it but who cares at this

point. =) I take Methotrexate now and started Neurontin and am doing very

well with them. I have Secondary Chronic Progressive now by the way.

Pam

Spokane, WA

October 3, 2000

Dear Gay,

I hear complaints about horrific side effects from the drug treatments.

Perhaps the people who contact me represent the most dissatisfied

who are looking for non-toxic treatments. Have any of you out there

had bad experiences with drug treatments that you'd like to describe to

the members of this group? How about side effects? Any damage

that seems to be permanent? When anyone has to learn these things

"the hard way" it is like having to reinvent the wheel.

Lillian Hanke

Librarian

Carol Hanson wrote:

Gay,I

understand where you're coming from about the money for treatments etc.

I've got the same problem, except I don't have a hubby! LOLI

really would be a good idea to do some researching on natural healing,

diet etc. right away, because then you can avoid the doctors doing something

that could be harmful to you in the long run. See the doctors, but

don't think all they say is right for you. When I look back on my

life, I wish I'd seen doctors less and ignored their medication recommendations.Carol

No, I haven't used the internet to research CS.

At this point, I'm more curious about it than deeply motivated to learn

more. I've been spending the last two weeks or so researching MS

docs in Chicago to identify a doctor and now it looks like I'm going to

need a new primary care physician as well.

As to the hyperbaric, no I have not looked into it. ly,

I'm financially... flat broke. I work full time during the

day and part time in the evening just trying to help my hubby keep us afloat.

We can't afford any treatment which is not covered by our insurance.

Maybe in the future, that will change. For right now, I have to deal

with the budget constraints. Three months from now, one of the major

bills will be paid off, but I will be laid off from the full-time job.

Oh well, first things first. 1.) Get a new primary care physician.

2.) Get the referral for the neuro (appointment is already set).

3.) See what kind of treatment he has in mind. 4.) THEN continue

research into alternative treatment.

Gawd. Sometimes it seems so overwhelming! Is it any

wonder I feel drained so much of the time....

Gay

..

October 3, 2000

hi all,

drugs are to new to know what long term effects are there?

who know's what's going to happen after 10 yrs of the abc drugs??

dr's don't know they just guess.

subi

>

>Reply-To: mscuredegroups

>To: mscuredegroups

>Subject: Re: Digest Number 284

>Date: Tue, 03 Oct 2000 12:54:58 -0500

>

>Dear Gay,

>I hear complaints about horrific side effects from the drug

>treatments. Perhaps the people who contact me represent the most

>dissatisfied who are looking for non-toxic treatments. Have any of

>you out there had bad experiences with drug treatments that you'd like

>to describe to the members of this group? How about side effects?

>Any damage that seems to be permanent? When anyone has to learn these

>things " the hard way " it is like having to reinvent the wheel.

>

>Lillian Hanke

>Librarian

>

>Carol Hanson wrote:

>

> > Gay,I understand where you're coming from about the money for

> > treatments etc. I've got the same problem, except I don't have a

> > hubby! LOLI really would be a good idea to do some researching on

> > natural healing, diet etc. right away, because then you can avoid

> > the doctors doing something that could be harmful to you in the long

> > run. See the doctors, but don't think all they say is right for

> > you. When I look back on my life, I wish I'd seen doctors less and

> > ignored their medication recommendations.Carol

> >

> > No, I haven't used the internet to research CS. At this

> > point, I'm more curious about it than deeply motivated to

> > learn more. I've been spending the last two weeks or so

> > researching MS docs in Chicago to identify a doctor and

> > now it looks like I'm going to need a new primary care

> > physician as well.

> >

> > As to the hyperbaric, no I have not looked into it.

> > ly, I'm financially... flat broke. I work full time

> > during the day and part time in the evening just trying to

> > help my hubby keep us afloat. We can't afford any

> > treatment which is not covered by our insurance. Maybe in

> > the future, that will change. For right now, I have to

> > deal with the budget constraints. Three months from now,

> > one of the major bills will be paid off, but I will be

> > laid off from the full-time job. Oh well, first things

> > first. 1.) Get a new primary care physician. 2.) Get the

> > referral for the neuro (appointment is already set). 3.)

> > See what kind of treatment he has in mind. 4.) THEN

> > continue research into alternative treatment.

> >

> > Gawd. Sometimes it seems so overwhelming! Is it any

> > wonder I feel drained so much of the time....

> >

> > Gay

> >

> > .

> >

October 4, 2000

Lillian,

I've only taken 2 MS related drugs. A week course of methyl prednisone a little over a year ago, and I didn't have any side effects from that. Then I took prednisone for hives, from December through most of February. It took 20+ mg. a day to stop the hives, which is kind of a high dose to take for as long as 2 and a half months. I gained 10 lbs and had the classic 'moon face' while on it. I got an infection in my finger that requaired antibiotics. Prednisone reduces your immunity, which is probably why I got the infection. Then I read that your immunity is reduced for up to 2 years after taking it. At that point I wished I hadn't taken it at all, especially since the hives came back when I went off it.

I take Copaxone, but have had no side effects, other than site reactions, which have not been that bad. They got better after being on it for a few months. The Copaxone is just 4 amino acids and mannitol, so it seems unlikely to me that anyone would have a reaction to it, since they are all ingredients that are in so many foods.

Carol

Dear Gay, I hear complaints about horrific side effects from the drug treatments. Perhaps the people who contact me represent the most dissatisfied who are looking for non-toxic treatments. Have any of you out there had bad experiences with drug treatments that you'd like to describe to the members of this group? How about side effects? Any damage that seems to be permanent? When anyone has to learn these things "the hard way" it is like having to reinvent the wheel.

Lillian Hanke Librarian Carol Hanson wrote:

Gay,I understand where you're coming from about the money for treatments etc. I've got the same problem, except I don't have a hubby! LOLI really would be a good idea to do some researching on natural healing, diet etc. right away, because then you can avoid the doctors doing something that could be harmful to you in the long run. See the doctors, but don't think all they say is right for you. When I look back on my life, I wish I'd seen doctors less and ignored their medication recommendations.Carol No, I haven't used the internet to research CS. At this point, I'm more curious about it than deeply motivated to learn more. I've been spending the last two weeks or so researching MS docs in Chicago to identify a doctor and now it looks like I'm going to need a new primary care physician as well. As to the hyperbaric, no I have not looked into it. ly, I'm financially... flat broke. I work full time during the day and part time in the evening just trying to help my hubby keep us afloat. We can't afford any treatment which is not covered by our insurance. Maybe in the future, that will change. For right now, I have to deal with the budget constraints. Three months from now, one of the major bills will be paid off, but I will be laid off from the full-time job. Oh well, first things first. 1.) Get a new primary care physician. 2.) Get the referral for the neuro (appointment is already set). 3.) See what kind of treatment he has in mind. 4.) THEN continue research into alternative treatment. Gawd. Sometimes it seems so overwhelming! Is it any wonder I feel drained so much of the time.... Gay .

October 4, 2000

Pam and all,

I know you've all probably heard of the study they did that showed MS to be actually 4 different diseases from 4 different sources. In the latest MS Connection, there is an article about that study. Here's a quote from the article:

"........suggests that a therapy that may be effective in individuals with one subgroup of disease may be ineffective, or even be harmful, in individuals of a different subgroup".

It looks like that could be the reason why so many of us have differing reactions to various drugs.

Carol

I was on Betaseron for 2 years. I have talked to people that have not had any problems but I certainly did. I started getting sores at injection sites but before that there was a personality change that was not for the best. I was so depressed and down when I got to a new Neurologist that he told me to stop taking it immediately. After about a month I felt so different. It was like a cloud lifted off me. I have scars on my tummy from it but who cares at this point. =) I take Methotrexate now and started Neurontin and am doing very well with them. I have Secondary Chronic Progressive now by the way.PamSpokane, WA.

October 4, 2000

Subi.

They are getting close to the 10 year mark for Copaxone. The people who were in the initial study have now been on it over 8 years.

Carol

hi all, drugs are to new to know what long term effects are there?who know's what's going to happen after 10 yrs of the abc drugs??dr's don't know they just guess.subi>>Reply-To: mscuredegroups>To: mscuredegroups>Subject: Re: Digest Number 284>Date: Tue, 03 Oct 2000 12:54:58 -0500>>Dear Gay,>I hear complaints about horrific side effects from the drug>treatments. Perhaps the people who contact me represent the most>dissatisfied who are looking for non-toxic treatments. Have any of>you out there had bad experiences with drug treatments that you'd like>to describe to the members of this group? How about side effects?>Any damage that seems to be permanent? When anyone has to learn these>things "the hard way" it is like having to reinvent the wheel.>>Lillian Hanke>Librarian>>Carol Hanson wrote:>> > Gay,I understand where you're coming from about the money for> > treatments etc. I've got the same problem, except I don't have a> > hubby! LOLI really would be a good idea to do some researching on> > natural healing, diet etc. right away, because then you can avoid> > the doctors doing something that could be harmful to you in the long> > run. See the doctors, but don't think all they say is right for> > you. When I look back on my life, I wish I'd seen doctors less and> > ignored their medication recommendations.Carol> >> > No, I haven't used the internet to research CS. At this> > point, I'm more curious about it than deeply motivated to> > learn more. I've been spending the last two weeks or so> > researching MS docs in Chicago to identify a doctor and> > now it looks like I'm going to need a new primary care> > physician as well.> >> > As to the hyperbaric, no I have not looked into it.> > ly, I'm financially... flat broke. I work full time> > during the day and part time in the evening just trying to> > help my hubby keep us afloat. We can't afford any> > treatment which is not covered by our insurance. Maybe in> > the future, that will change. For right now, I have to> > deal with the budget constraints. Three months from now,> > one of the major bills will be paid off, but I will be> > laid off from the full-time job. Oh well, first things> > first. 1.) Get a new primary care physician. 2.) Get the> > referral for the neuro (appointment is already set). 3.)> > See what kind of treatment he has in mind. 4.) THEN> > continue research into alternative treatment.> >> > Gawd. Sometimes it seems so overwhelming! Is it any> > wonder I feel drained so much of the time....> >> > Gay> >> > .> >

October 4, 2000

Subi

Yes, I check in with the medical community at least once a year for my annual physical and tests. I'm just glad that I now know how to interpret the tests and what the doctor tells me, so I can make my own decisions about my health. So many people adopt the attitude that the doctor knows what's best - they just sort of hand themselves over to the doctor's care. I used to do that myself for years. It's quite a shock when you come to the realization that's not such a good idea. When I found out that the prednisome my doctor so happily prescribed for my hives has many really bad side effects when taken as long as he had me on it, it was eye opening. I realized that he had made the decision that the hives were a worse malady than the side effects of the prednisone. If I'd known the side effects of the prednision at the time, I feel I would have made a better judgement decision than he did. I'd rather suffer with the hives than risk broken bones, thinning skin and internal organs, and almost no immunity.

Carol

carol, good for you!i found out trusting myself instead of my dx is a much better wayto take care of myself.but, i'm glad i get their advice every so often but,i do what feels right to me.subi>>Reply-To: mscuredegroups>To: <mscuredegroups>>Subject: Re: Digest Number 284>Date: Mon, 2 Oct 2000 11:31:02 -0700>>Gay,>I understand where you're coming from about the money for treatments etc. >I've got the same problem, except I don't have a hubby! LOL>I really would be a good idea to do some researching on natural healing, >diet etc. right away, because then you can avoid the doctors doing >something that could be harmful to you in the long run. See the doctors, >but don't think all they say is right for you. When I look back on my >life, I wish I'd seen doctors less and ignored their medication >recommendations.>Carol>> No, I haven't used the internet to research CS. At this point, I'm more >curious about it than deeply motivated to learn more. I've been spending >the last two weeks or so researching MS docs in Chicago to identify a >doctor and now it looks like I'm going to need a new primary care physician >as well.>> As to the hyperbaric, no I have not looked into it. ly, I'm >financially... flat broke. I work full time during the day and part time >in the evening just trying to help my hubby keep us afloat. We can't >afford any treatment which is not covered by our insurance. Maybe in the >future, that will change. For right now, I have to deal with the budget >constraints. Three months from now, one of the major bills will be paid >off, but I will be laid off from the full-time job. Oh well, first things >first. 1.) Get a new primary care physician. 2.) Get the referral for the >neuro (appointment is already set). 3.) See what kind of treatment he has >in mind. 4.) THEN continue research into alternative treatment.>> Gawd. Sometimes it seems so overwhelming! Is it any wonder I feel >drained so much of the time....>> Gay>> .>

October 4, 2000

In a message dated 10/3/00 2:00:33 PM Eastern Daylight Time, drbrewer@...

writes:

> Have any of

> you out there had bad experiences with drug treatments that you'd like

> to describe to the members of this group? How about side effects?

Hi Lillian,

I am on Betaseron. No side effects. Except when I decide to go off I think I

am a little more UP. Maybe just think I am?

I have also had 3 rounds of solumedrol in the last two years. I will NEVER do

that again--Lord willing. I also took medrol for 7 years daily for?

arthritis?-pain aching.

I loved it. Felt great on it till I got the IV's. They wiped me out!

Depressed, weak brain dead for months after. Now I have finally found a

doctor who knows why. My adrenals are real weak.--Maybe from all the

steroids. My neuro (soon to be X neuro) thinks if I am tired I need more

solumedrol. SO--I am working to strengthen myself after all this treatment.

Bottom line is " listen to you self and be careful "

Kaye

October 4, 2000

In a message dated 10/3/00 3:06:37 PM Eastern Daylight Time,

subi2323@... writes:

> Hi all,

> drugs are to new to know what long term effects are there?

> who knows what's going to happen after 10 yrs of the abc drugs??

> DR's don't know they just guess.

> subi

Subi,

I agree. That's why every once in awhile I decide to just do what is good for

me and go off. BUT then I start getting worse and figure it it really stupid

to not take it .

I haven't been able to find a doctor who can tell me exactly WHAT the stuff

is doing to me. What harmfull thing it might be doing . IIf any one has that

info I really like to be an informed druggie.

Thanks,

Kaye

October 4, 2000

In a message dated 10/4/00 7:49:30 PM Pacific Daylight Time,

kayeelder@... writes:

<< Subi,

I agree. That's why every once in awhile I decide to just do what is good

for

me and go off. BUT then I start getting worse and figure it it really stupid

to not take it .

I haven't been able to find a doctor who can tell me exactly WHAT the stuff

is doing to me. What harmfull thing it might be doing . IIf any one has

that

info I really like to be an informed druggie.

Thanks,

Kaye >>

Kaye,

There's all kinds of places on the web with drug info. I've done searches on

them and that's what's really 'turned me off' on them. When you search, you

find all kinds of info. There are very few drugs that don't have at least

long term bad effects. The side effects they list are not necessarily all

the effects there are. They cause deterioration in the body over time that

leads to disease.

Carol

October 5, 2000

In a message dated 10/5/00 5:25:20 AM Pacific Daylight Time,

subi2323@... writes:

<< ok carol,

my mistake, 10 year's isn't that long anyway. i'll let people be on it

40

to 60

year's and see what side effects show's up and if they still have only 30%

success rate,

i will stay with my alternative's.

with 75-80% success rates.

subi

>>

Subi,

Hope I didn't offend! I agree with you 100%. I have my special diet and

supplements, and stick to them religiously. I take Copaxone simply because

it's just amino acids and mannitol, and I can't see how it could have bad

effects. I have a pharmacist friend and picked her brain about it too. I

wouldn't take an interferon, though, or any other MS drugs. I researched

them heavily and after months decided to try Copaxone. I read one little

blip by a Phd. that said he feared that, with the interferons, your body

could quit making it's own interferon and then you'd really be in bad shape.

So, I steered clear of them and went with Copaxone. I'm hoping that with my

diet and supplements giving me possibly a 60% improvement and the Copaxone a

40% improvement, together I'll have it made. LOL, Actually, the University

of land is in the process of doing a study on it that has been going on

for 6 years and is continuing. It includes 101 MS patients. Their relapses

have diminished from 2 a year to 1 every 4 to 5 years, which equals a 72%

reduction in relapse rate. They are saying that the relapse reduction

increases the longer the patient has been on it.

I can send the article to anyone who's interested in it.

Carol

October 5, 2000

Kaye, I have a feeling that my adrenals are messed up too. What can we do to

stimulate them and make them stronger?

cyn

XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX

XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX

Re: Digest Number 284

> In a message dated 10/3/00 2:00:33 PM Eastern Daylight Time,

drbrewer@...

> writes:

>

> > Have any of

> > you out there had bad experiences with drug treatments that you'd like

> > to describe to the members of this group? How about side effects?

>

> Hi Lillian,

> I am on Betaseron. No side effects. Except when I decide to go off I think

I

> am a little more UP. Maybe just think I am?

>

> I have also had 3 rounds of solumedrol in the last two years. I will NEVER

do

> that again--Lord willing. I also took medrol for 7 years daily for?

> arthritis?-pain aching.

> I loved it. Felt great on it till I got the IV's. They wiped me out!

> Depressed, weak brain dead for months after. Now I have finally found a

> doctor who knows why. My adrenals are real weak.--Maybe from all the

> steroids. My neuro (soon to be X neuro) thinks if I am tired I need more

> solumedrol. SO--I am working to strengthen myself after all this

treatment.

>

> Bottom line is " listen to you self and be careful "

>

> Kaye

>

> .

>

October 5, 2000

ok carol,

my mistake, 10 year's isn't that long anyway. i'll let people be on it 40

to 60

year's and see what side effects show's up and if they still have only 30%

success rate,

i will stay with my alternative's.

with 75-80% success rates.

subi

>

>Reply-To: mscuredegroups

>To: <mscuredegroups>

>Subject: Re: Digest Number 284

>Date: Wed, 4 Oct 2000 11:13:18 -0700

>

>Subi.

>They are getting close to the 10 year mark for Copaxone. The people who

>were in the initial study have now been on it over 8 years.

>Carol

>

> hi all,

> drugs are to new to know what long term effects are there?

> who know's what's going to happen after 10 yrs of the abc drugs??

> dr's don't know they just guess.

> subi

>

> >

> >Reply-To: mscuredegroups

> >To: mscuredegroups

> >Subject: Re: Digest Number 284

> >Date: Tue, 03 Oct 2000 12:54:58 -0500

> >

> >Dear Gay,

> >I hear complaints about horrific side effects from the drug

> >treatments. Perhaps the people who contact me represent the most

> >dissatisfied who are looking for non-toxic treatments. Have any of

> >you out there had bad experiences with drug treatments that you'd like

> >to describe to the members of this group? How about side effects?

> >Any damage that seems to be permanent? When anyone has to learn these

> >things " the hard way " it is like having to reinvent the wheel.

> >

> >Lillian Hanke

> >Librarian

> >

> >Carol Hanson wrote:

> >

> > > Gay,I understand where you're coming from about the money for

> > > treatments etc. I've got the same problem, except I don't have a

> > > hubby! LOLI really would be a good idea to do some researching on

> > > natural healing, diet etc. right away, because then you can avoid

> > > the doctors doing something that could be harmful to you in the long

> > > run. See the doctors, but don't think all they say is right for

> > > you. When I look back on my life, I wish I'd seen doctors less and

> > > ignored their medication recommendations.Carol

> > >

> > > No, I haven't used the internet to research CS. At this

> > > point, I'm more curious about it than deeply motivated to

> > > learn more. I've been spending the last two weeks or so

> > > researching MS docs in Chicago to identify a doctor and

> > > now it looks like I'm going to need a new primary care

> > > physician as well.

> > >

> > > As to the hyperbaric, no I have not looked into it.

> > > ly, I'm financially... flat broke. I work full time

> > > during the day and part time in the evening just trying to

> > > help my hubby keep us afloat. We can't afford any

> > > treatment which is not covered by our insurance. Maybe in

> > > the future, that will change. For right now, I have to

> > > deal with the budget constraints. Three months from now,

> > > one of the major bills will be paid off, but I will be

> > > laid off from the full-time job. Oh well, first things

> > > first. 1.) Get a new primary care physician. 2.) Get the

> > > referral for the neuro (appointment is already set). 3.)

> > > See what kind of treatment he has in mind. 4.) THEN

> > > continue research into alternative treatment.

> > >

> > > Gawd. Sometimes it seems so overwhelming! Is it any

> > > wonder I feel drained so much of the time....

> > >

> > > Gay

> > >

> > > .

> > >

October 5, 2000

carol,

glad you check in once a year, i do the same.

sounds like you are taking care of yourself. just do what you feel is best

for you.

your answers will always come out right.

subi

>

>Reply-To: mscuredegroups

>To: <mscuredegroups>

>Subject: Re: Digest Number 284

>Date: Wed, 4 Oct 2000 11:27:00 -0700

>

>Subi

>Yes, I check in with the medical community at least once a year for my

>annual physical and tests. I'm just glad that I now know how to interpret

>the tests and what the doctor tells me, so I can make my own decisions

>about my health. So many people adopt the attitude that the doctor knows

>what's best - they just sort of hand themselves over to the doctor's care.

>I used to do that myself for years. It's quite a shock when you come to

>the realization that's not such a good idea. When I found out that the

>prednisome my doctor so happily prescribed for my hives has many really bad

>side effects when taken as long as he had me on it, it was eye opening. I

>realized that he had made the decision that the hives were a worse malady

>than the side effects of the prednisone. If I'd known the side effects of

>the prednision at the time, I feel I would have made a better judgement

>decision than he did. I'd rather suffer with the hives than risk broken

>bones, thinning skin and internal organs, and almost no immunity.

>Carol

> carol,

> good for you!

> i found out trusting myself instead of my dx is a much better way

> to take care of myself.

> but, i'm glad i get their advice every so often but,

> i do what feels right to me.

> subi

>

> >

> >Reply-To: mscuredegroups

> >To: <mscuredegroups>

> >Subject: Re: Digest Number 284

> >Date: Mon, 2 Oct 2000 11:31:02 -0700

> >

> >Gay,

> >I understand where you're coming from about the money for treatments

>etc.

> >I've got the same problem, except I don't have a hubby! LOL

> >I really would be a good idea to do some researching on natural

>healing,

> >diet etc. right away, because then you can avoid the doctors doing

> >something that could be harmful to you in the long run. See the

>doctors,

> >but don't think all they say is right for you. When I look back on my

> >life, I wish I'd seen doctors less and ignored their medication

> >recommendations.

> >Carol

> >

> > No, I haven't used the internet to research CS. At this point, I'm

>more

> >curious about it than deeply motivated to learn more. I've been

>spending

> >the last two weeks or so researching MS docs in Chicago to identify a

> >doctor and now it looks like I'm going to need a new primary care

>physician

> >as well.

> >

> > As to the hyperbaric, no I have not looked into it. ly, I'm

> >financially... flat broke. I work full time during the day and part

>time

> >in the evening just trying to help my hubby keep us afloat. We can't

> >afford any treatment which is not covered by our insurance. Maybe in

>the

> >future, that will change. For right now, I have to deal with the

>budget

> >constraints. Three months from now, one of the major bills will be

>paid

> >off, but I will be laid off from the full-time job. Oh well, first

>things

> >first. 1.) Get a new primary care physician. 2.) Get the referral for

>the

> >neuro (appointment is already set). 3.) See what kind of treatment he

>has

> >in mind. 4.) THEN continue research into alternative treatment.

> >

> > Gawd. Sometimes it seems so overwhelming! Is it any wonder I feel

> >drained so much of the time....

> >

> > Gay

> >

> > .

> >

October 5, 2000

kaye,

take them if you want, but there is a better way for you.

all i really know is what works for me. i found the ayurvedic and noni

combination is the best for me. sounds like being on drugs and taking a

break is your truth,

sorry, i feel you can find a better way, whatever it is; there are too many

to count.

maybe you need those drugs, i hope not.

lol,

subi

>From: kayeelder@...

>Reply-To: mscuredegroups

>To: mscuredegroups

>Subject: Re: Digest Number 284

>Date: Wed, 4 Oct 2000 22:49:00 EDT

>

>In a message dated 10/3/00 3:06:37 PM Eastern Daylight Time,

>subi2323@... writes:

>

> > Hi all,

> > drugs are to new to know what long term effects are there?

> > who knows what's going to happen after 10 yrs of the abc drugs??

> > DR's don't know they just guess.

> > subi

>Subi,

>I agree. That's why every once in awhile I decide to just do what is good

>for

>me and go off. BUT then I start getting worse and figure it it really

>stupid

>to not take it .

>

>I haven't been able to find a doctor who can tell me exactly WHAT the

>stuff

>is doing to me. What harmfull thing it might be doing . IIf any one has

>that

>info I really like to be an informed druggie.

>

>Thanks,

>Kaye

>

>.

>

October 5, 2000

In a message dated 10/4/00 11:09:37 PM Eastern Daylight Time, Cah819@...

writes:

> aye >>

> Kaye,

> There's all kinds of places on the web with drug info. I've done searches

> on

> them and that's what's really 'turned me off' on them. When you search,

you

>

> find all kinds of info. There are very few drugs that don't have at least

> long term bad effects. The side effects they list are not necessarily all

> the effects there are. They cause deterioration in the body over time

that

> leads to disease.

> Carol

>

Carol,

I'm talking about the ABC drugs. Betaseron for me. I will look again . I know

I can find the listed side effects .But the long term damage is what I am

concerned aboout.If you know of a specific web site you can point me to I'd

really appreciate it. REALLY!!! I admit I haven't been searching about

betaseron for the last year. Looking for other answers to replace it .

Thanks!

KAye

October 5, 2000

In a message dated 10/5/00 8:18:16 AM Eastern Daylight Time,

marcyn@... writes:

>

> Kaye, I have a feeling that my adrenals are messed up too. What can we do

> to

> stimulate them and make them stronger?

> cyn

Cyn,

Please write and askme again. I have to go see a client!

ANd I'm not so good with this computer and organizing things in it andn I'm

having trouble writing -----BUT Ido have some answers on that subject.

Kaye

October 5, 2000

carol,

i was on copaxone for 2 years with no benefit, relapse every 6-8

months. now that i'm doing it my way, i've had 2 relapse's in 7 years.

i hope thats it. I had 2 bad falls and got a relapse.

have to stop being in a hurry.

but if copaxone works for you, that's great.

it was 30% 7 years ago.

subi

>From: Cah819@...

>Reply-To: mscuredegroups

>To: mscuredegroups

>Subject: Re: Digest Number 284

>Date: Thu, 5 Oct 2000 10:13:35 EDT

>

>In a message dated 10/5/00 5:25:20 AM Pacific Daylight Time,

>subi2323@... writes:

>

><< ok carol,

> my mistake, 10 year's isn't that long anyway. i'll let people be on

>it

>40

> to 60

> year's and see what side effects show's up and if they still have only

>30%

> success rate,

> i will stay with my alternative's.

> with 75-80% success rates.

> subi

>

> >>

>Subi,

>Hope I didn't offend! I agree with you 100%. I have my special diet and

>supplements, and stick to them religiously. I take Copaxone simply because

>it's just amino acids and mannitol, and I can't see how it could have bad

>effects. I have a pharmacist friend and picked her brain about it too. I

>wouldn't take an interferon, though, or any other MS drugs. I researched

>them heavily and after months decided to try Copaxone. I read one little

>blip by a Phd. that said he feared that, with the interferons, your body

>could quit making it's own interferon and then you'd really be in bad

>shape.

>So, I steered clear of them and went with Copaxone. I'm hoping that with

>my

>diet and supplements giving me possibly a 60% improvement and the Copaxone

>a

>40% improvement, together I'll have it made. LOL, Actually, the

>University

>of land is in the process of doing a study on it that has been going on

>for 6 years and is continuing. It includes 101 MS patients. Their

>relapses

>have diminished from 2 a year to 1 every 4 to 5 years, which equals a 72%

>reduction in relapse rate. They are saying that the relapse reduction

>increases the longer the patient has been on it.

>I can send the article to anyone who's interested in it.

>Carol

>

>.

>

October 5, 2000

Dear Kaye,

Our library has the archives of the late Dr. Hans Nieper, MD of Germany.

I would like to quote what he says about various medications:

"5 to 8 mgs. of prednisone (no other cortisone)

can be taken daily. Prednisone is an imitator of the aforementioned*

surveillance steroids, other cortisones are not. At this dose prednisone

has no side effects. In addition to this, the Calcium-carriers like

Calcium-EAP and Calcium orotate are officially declared in Germany to compensate

cortisone side effects.

ACTH - therapy should be avoided under all conditions.

It worsens the disease in the long run since it "squeezes" the adrenal

glands. The profit from ACTH is only short term and will not last.

In another paper he said more about ACTH and warned against the use

of Imuran (azathioprine) and Endoxan (cyclophosphamide). He says:

"We have found the habit quite widespread--maybe

we should say the "bad habit"--of prescribing ACTH (adrenocorticotropic

hormone) to MS patients. While there is a temporary improvement,

the long run picture is of steady deterioration. This is the only

way it can be, because the already exhausted adrenal cortex system is just

been squeezed harder. If one (has been) given ACTH for a short time,

it is absolutely necessary to supply the required foods for the adrenal

cortex systems--raw foods, vitamin D2, vitamin C (in large doses), beta

carotene (dry form), and especially selenium (about 50 to 200 mcg daily).

We would like to emphasize that we have never used ACTH at all for the

past ten years.

We occasionally run across patients who have been

treated with these substances. Before administering this, I think that

it is essential to fully warn the patient that azathioprine will cause

liver damage if used for any length of time. In addition, there is

an increased susceptibility to viral infection and possibly even cancer.

There have been repeated warnings in the newspapers, especially in the

US, of the carcinogenic activity of immune inhibiting drugs.

And then there is cyclophosphamide (Endoxan, Cytoxan).

Occasionally, American doctors will prescribe this in highly toxic doses.

We often get these patients with their hair falling out, and with severe

damage to the blood building bone marrow. For this reason it is not

advisable to use (them)."

*explained earlier in the paper

So, these are some comments made by a physician who used what he evaluated

as worthwhile from the "orthodox" medicine community and primarily used

a nutritional support therapy for MS patients who travelled to see him.

Lillian Hanke

Librarian

kayeelder@... wrote:

In a message dated 10/3/00 2:00:33 PM Eastern

Daylight Time, drbrewer@...

writes:

> Have any of

> you out there had bad experiences with drug treatments that you'd

like

> to describe to the members of this group? How about side

effects?

Hi Lillian,

I am on Betaseron. No side effects. Except when I decide to go

off I think I

am a little more UP. Maybe just think I am?

I have also had 3 rounds of solumedrol in the last two years. I

will NEVER do

that again--Lord willing. I also took medrol for 7 years daily

for?

arthritis?-pain aching.

I loved it. Felt great on it till I got the IV's. They wiped me

out!

Depressed, weak brain dead for months after. Now I have finally

found a

doctor who knows why. My adrenals are real weak.--Maybe from all

the

steroids. My neuro (soon to be X neuro) thinks if I am tired I

need more

solumedrol. SO--I am working to strengthen myself after all this

treatment.

Bottom line is "listen to you self and be careful"

Kaye

..

October 5, 2000

Lillian,

I've been trying to get my hands on Dr. Nieper's recommendations for MS for a year or so. Do you have all that info?

Carol

Dear Kaye, Our library has the archives of the late Dr. Hans Nieper, MD of Germany. I would like to quote what he says about various medications: "5 to 8 mgs. of prednisone (no other cortisone) can be taken daily. Prednisone is an imitator of the aforementioned* surveillance steroids, other cortisones are not. At this dose prednisone has no side effects. In addition to this, the Calcium-carriers like Calcium-EAP and Calcium orotate are officially declared in Germany to compensate cortisone side effects. ACTH - therapy should be avoided under all conditions. It worsens the disease in the long run since it "squeezes" the adrenal glands. The profit from ACTH is only short term and will not last. In another paper he said more about ACTH and warned against the use of Imuran (azathioprine) and Endoxan (cyclophosphamide). He says: "We have found the habit quite widespread--maybe we should say the "bad habit"--of prescribing ACTH (adrenocorticotropic hormone) to MS patients. While there is a temporary improvement, the long run picture is of steady deterioration. This is the only way it can be, because the already exhausted adrenal cortex system is just been squeezed harder. If one (has been) given ACTH for a short time, it is absolutely necessary to supply the required foods for the adrenal cortex systems--raw foods, vitamin D2, vitamin C (in large doses), beta carotene (dry form), and especially selenium (about 50 to 200 mcg daily). We would like to emphasize that we have never used ACTH at all for the past ten years. We occasionally run across patients who have been treated with these substances. Before administering this, I think that it is essential to fully warn the patient that azathioprine will cause liver damage if used for any length of time. In addition, there is an increased susceptibility to viral infection and possibly even cancer. There have been repeated warnings in the newspapers, especially in the US, of the carcinogenic activity of immune inhibiting drugs. And then there is cyclophosphamide (Endoxan, Cytoxan). Occasionally, American doctors will prescribe this in highly toxic doses. We often get these patients with their hair falling out, and with severe damage to the blood building bone marrow. For this reason it is not advisable to use (them)." *explained earlier in the paper So, these are some comments made by a physician who used what he evaluated as worthwhile from the "orthodox" medicine community and primarily used a nutritional support therapy for MS patients who travelled to see him. Lillian Hanke Librarian kayeelder@... wrote: > Have any of > you out there had bad experiences with drug treatments that you'd like > to describe to the members of this group? How about side effects? Hi Lillian, I am on Betaseron. No side effects. Except when I decide to go off I think I am a little more UP. Maybe just think I am? I have also had 3 rounds of solumedrol in the last two years. I will NEVER do that again--Lord willing. I also took medrol for 7 years daily for? arthritis?-pain aching. I loved it. Felt great on it till I got the IV's. They wiped me out! Depressed, weak brain dead for months after. Now I have finally found a doctor who knows why. My adrenals are real weak.--Maybe from all the steroids. My neuro (soon to be X neuro) thinks if I am tired I need more solumedrol. SO--I am working to strengthen myself after all this treatment. Bottom line is "listen to you self and be careful" Kaye .

October 5, 2000

Kay,

No, I don't know of a site where you can find a list of long term damage effects. I doubt there is one. I'm just going by what I've read about drugs in general and what I've run into when doing drug searches. I wouldn't pay any attention to what the drug companies say either. (Except to get the ingredients of the product.) When I've searched, I've passed up the references to the companies who make them and look for other sites. You'd be amazed how much you can learn that way. Also, I find out what drugs are made of, research the ingredients and make my own decision. Just like I did with Copaxone's four amino acids and mannitol. I avoid interferons, because of a reference I read that said there was some fear of the body shutting down production of its own interferon permanently.

Carol

Carol,I'm talking about the ABC drugs. Betaseron for me. I will look again . I know I can find the listed side effects .But the long term damage is what I am concerned aboout.If you know of a specific web site you can point me to I'd really appreciate it. REALLY!!! I admit I haven't been searching about betaseron for the last year. Looking for other answers to replace it .Thanks!KAye .

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