Re: Worried Dr. Franco may not be able to help me...-Lynne

[Guest guest]

Thanks for your response Lynne. I did nto find a SS patient on the MP site when

I was there a while ago. I was hoping to try whatever protocol uses (in addition

to mino or doxy) Clymidicin, Zithromax and Flagyl, I believe they are for

mycoplasmas and chlamydia pneumonia. Problem is, I don’t know which one(s) I

need. I don’t know specifically what I am infected with to take the right ones.

The reason I have not done the MP is because when I am in the sun I seem to feel

my best. His protocol states you need to keep away from the sun. Also if I

removed all Vit D foods I would have little to eat because already I am on

specific diet due to my tmjd jaw pain, low inflammatory foods, and lack of

saliva. I have also really low BP and the beta blocker could lower it further.

So for these reasons I have not tried MP. If a doctor told me this was the only

way, I would try to find a way. But right now, I have no direction either way

and so I thought I would try the protocol easiest on

my body but I still need answers so I know more specifically what to take. Has

anyone here been on MP? Or is everyone just taking mino?

Lynn, I appreciate your response, I am just opening this up for discussion

since I dont hear much about MP specifics on here. THANKS!!!

lynneandsantos <lynneandsantos@...> wrote: Hi Vicki;

Have you looked at MP and contacted anyone there?Do a search under

Sjogren's and see if anyone ia being treated for that.:Lynne

Vicki wrote:

> The POINT was that it was TREATABLE, at least the patients I have

> talked to with certain diseases, and the doctors I have spoken to who

> have treated those diseases yet wont even try to help with mine,

> obviously some may not get well even with more treatable diseases, but

> many can. Getting well is the best thing in the world we could hope

> for. I have yet to find a SS patient who is now better from Mino

> alone, even a combo of antibiotics is not enough for the SS patients I

> found. Yet Dolores you say that THREE diseases of yours are much

> better now post Mino. That is amazing, you should focus on that, be

> thankful for that and not forget how bad it was when you were sick

> before. Because with SS its not so simple so please dont you two make

> me feel like the bad guy, I am not the enemy. The only thing I am

> guilty of is complaining too much which doesnt do any good. For the

> last time, I am not comparing diseases as far as what they do to a

> person, that would be plain! ignorant and

> inconsiderate. ALL diseases suck. My sole point was the first sentence

> above. Not sure why that is so unclear. I'm done with this thread and

> the support I received, or lack there of.

>

> mike rosner <martysfolks2004@...

> <mailto:martysfolks2004%40>> wrote: Well said, ! I have

> sclero, R/A & MCTD and I was knocking at heaven's door prior to

> discovering Mino! Miserable is hardly the word! DEADLY! is the correct

> word. Thanks for pointing that out! Dolores

>

> Sltfain@... <mailto:Sltfain%40aol.com> wrote: .....just a thought

> posted your way concerning your " wish " that you had

> sclero or RA and that you are certain they are miserable. Not to be

> mean, but

> read about sclero and then comment. It is not " miserable. " It is DEADLY.

>

>

> ************************************** Get a sneak peek of the all-new

> AOL at

> http://discover.aol.com/memed/aolcom30tour

> <http://discover.aol.com/memed/aolcom30tour>

>

>

[Guest guest]

Hi Vicki;

The reason you feel better with sunshine is that vit D which by the

way is a steroid and not a vitamin works similarly to prednisone.Maybe

you should do a posting to Mac on the www.roadback.org

site.Both he and his wife have been on it for a couple of years and he

will know for sure if there are any SSers .Lots of people communicate

directly and do not use the BBoard;

Getting tested for mico. is not of much use as you could go broke

doing so.There are a cople hundred types.Just take it for granted that

you have is as 50% of the regular population does.Those that have good

immune systems don't get sick but those of us(bet most are type " A " )who

have a genetic predisposition and weak immune system get seriously

sick.MP docs does not test for mico. when using MP and that is why they

use several different antibiotics but start at very low doses and work

up to the dose we are already taking. Lynne

Vicki wrote:

> Thanks for your response Lynne. I did nto find a SS patient on the MP

> site when I was there a while ago. I was hoping to try whatever

> protocol uses (in addition to mino or doxy) Clymidicin, Zithromax and

> Flagyl, I believe they are for mycoplasmas and chlamydia pneumonia.

> Problem is, I don't know which one(s) I need. I don't know

> specifically what I am infected with to take the right ones. The

> reason I have not done the MP is because when I am in the sun I seem

> to feel my best. His protocol states you need to keep away from the

> sun. Also if I removed all Vit D foods I would have little to eat

> because already I am on specific diet due to my tmjd jaw pain, low

> inflammatory foods, and lack of saliva. I have also really low BP and

> the beta blocker could lower it further. So for these reasons I have

> not tried MP. If a doctor told me this was the only way, I would try

> to find a way. But right now, I have no direction either way and so I

> thought I would try the protocol easiest on

> my body but I still need answers so I know more specifically what to

> take. Has anyone here been on MP? Or is everyone just taking mino?

>

> Lynn, I appreciate your response, I am just opening this up for

> discussion since I dont hear much about MP specifics on here. THANKS!!!

>

> lynneandsantos <lynneandsantos@...

> <mailto:lynneandsantos%40citenet.net>> wrote: Hi Vicki;

> Have you looked at MP and contacted anyone there?Do a search under

> Sjogren's and see if anyone ia being treated for that.:Lynne

>

> Vicki wrote:

>

> > The POINT was that it was TREATABLE, at least the patients I have

> > talked to with certain diseases, and the doctors I have spoken to who

> > have treated those diseases yet wont even try to help with mine,

> > obviously some may not get well even with more treatable diseases, but

> > many can. Getting well is the best thing in the world we could hope

> > for. I have yet to find a SS patient who is now better from Mino

> > alone, even a combo of antibiotics is not enough for the SS patients I

> > found. Yet Dolores you say that THREE diseases of yours are much

> > better now post Mino. That is amazing, you should focus on that, be

> > thankful for that and not forget how bad it was when you were sick

> > before. Because with SS its not so simple so please dont you two make

> > me feel like the bad guy, I am not the enemy. The only thing I am

> > guilty of is complaining too much which doesnt do any good. For the

> > last time, I am not comparing diseases as far as what they do to a

> > person, that would be plain! ignorant and

> > inconsiderate. ALL diseases suck. My sole point was the first sentence

> > above. Not sure why that is so unclear. I'm done with this thread and

> > the support I received, or lack there of.

> >

> > mike rosner <martysfolks2004@...

> <mailto:martysfolks2004%40>

> > <mailto:martysfolks2004%40>> wrote: Well said, ! I have

> > sclero, R/A & MCTD and I was knocking at heaven's door prior to

> > discovering Mino! Miserable is hardly the word! DEADLY! is the correct

> > word. Thanks for pointing that out! Dolores

> >

> > Sltfain@... <mailto:Sltfain%40aol.com>

> <mailto:Sltfain%40aol.com> wrote: .....just a thought

> > posted your way concerning your " wish " that you had

> > sclero or RA and that you are certain they are miserable. Not to be

> > mean, but

> > read about sclero and then comment. It is not " miserable. " It is DEADLY.

> >

> >

> > ************************************** Get a sneak peek of the all-new

> > AOL at

> > http://discover.aol.com/memed/aolcom30tour

> <http://discover.aol.com/memed/aolcom30tour>

> > <http://discover.aol.com/memed/aolcom30tour

> <http://discover.aol.com/memed/aolcom30tour>>

> >

> >

[Guest guest]

Hi Lynne, I did read about Vit D being not a Vit but a steroid but tend to

forget since it is labeled vitamin. But I assume it is not like prednisone and

other icky steroids? I assume it is much milder form right?

When people here say " AP " they mean antibiotic protocol right? So when someone

says they got better on AP we dont really know which antibiotics right? or are

they referring to something in particular?

Are you using MP Lynne or about to?

I will contact Mac and see what he says. One doctor said SS is

treated just like RA in regards to antibiotics. I dont recall his name. But if

that was the case, then all conventional drugs made for RA that work for RA

patients would help SS, yet they try them on SS patients and they always fail.

Because a lot more is spent to research RA, more drugs are made but they clealry

have to be more specific to the particular disease to work. Also, if what he

says is true, then many SS patients would be getting much better off Mino alone.

I have not found one such primary SS patient.

You are right, mycoplasma testing may not yield the results I seek. And it is

expensive, these specialty labs to not contract much with insurance companies.

lynneandsantos <lynneandsantos@...> wrote:

Hi Vicki;

The reason you feel better with sunshine is that vit D which by the

way is a steroid and not a vitamin works similarly to prednisone.Maybe

you should do a posting to Mac on the www.roadback.org

site.Both he and his wife have been on it for a couple of years and he

will know for sure if there are any SSers .Lots of people communicate

directly and do not use the BBoard;

Getting tested for mico. is not of much use as you could go broke

doing so.There are a cople hundred types.Just take it for granted that

you have is as 50% of the regular population does.Those that have good

immune systems don't get sick but those of us(bet most are type " A " )who

have a genetic predisposition and weak immune system get seriously

sick.MP docs does not test for mico. when using MP and that is why they

use several different antibiotics but start at very low doses and work

up to the dose we are already taking. Lynne

Vicki wrote:

> Thanks for your response Lynne. I did nto find a SS patient on the MP

> site when I was there a while ago. I was hoping to try whatever

> protocol uses (in addition to mino or doxy) Clymidicin, Zithromax and

> Flagyl, I believe they are for mycoplasmas and chlamydia pneumonia.

> Problem is, I don't know which one(s) I need. I don't know

> specifically what I am infected with to take the right ones. The

> reason I have not done the MP is because when I am in the sun I seem

> to feel my best. His protocol states you need to keep away from the

> sun. Also if I removed all Vit D foods I would have little to eat

> because already I am on specific diet due to my tmjd jaw pain, low

> inflammatory foods, and lack of saliva. I have also really low BP and

> the beta blocker could lower it further. So for these reasons I have

> not tried MP. If a doctor told me this was the only way, I would try

> to find a way. But right now, I have no direction either way and so I

> thought I would try the protocol easiest on

> my body but I still need answers so I know more specifically what to

> take. Has anyone here been on MP? Or is everyone just taking mino?

>

> Lynn, I appreciate your response, I am just opening this up for

> discussion since I dont hear much about MP specifics on here. THANKS!!!

>

> lynneandsantos <lynneandsantos@...

> <mailto:lynneandsantos%40citenet.net>> wrote: Hi Vicki;

> Have you looked at MP and contacted anyone there?Do a search under

> Sjogren's and see if anyone ia being treated for that.:Lynne

>

> Vicki wrote:

>

> > The POINT was that it was TREATABLE, at least the patients I have

> > talked to with certain diseases, and the doctors I have spoken to who

> > have treated those diseases yet wont even try to help with mine,

> > obviously some may not get well even with more treatable diseases, but

> > many can. Getting well is the best thing in the world we could hope

> > for. I have yet to find a SS patient who is now better from Mino

> > alone, even a combo of antibiotics is not enough for the SS patients I

> > found. Yet Dolores you say that THREE diseases of yours are much

> > better now post Mino. That is amazing, you should focus on that, be

> > thankful for that and not forget how bad it was when you were sick

> > before. Because with SS its not so simple so please dont you two make

> > me feel like the bad guy, I am not the enemy. The only thing I am

> > guilty of is complaining too much which doesnt do any good. For the

> > last time, I am not comparing diseases as far as what they do to a

> > person, that would be plain! ignorant and

> > inconsiderate. ALL diseases suck. My sole point was the first sentence

> > above. Not sure why that is so unclear. I'm done with this thread and

> > the support I received, or lack there of.

> >

> > mike rosner <martysfolks2004@...

> <mailto:martysfolks2004%40>

> > <mailto:martysfolks2004%40>> wrote: Well said, ! I have

> > sclero, R/A & MCTD and I was knocking at heaven's door prior to

> > discovering Mino! Miserable is hardly the word! DEADLY! is the correct

> > word. Thanks for pointing that out! Dolores

> >

> > Sltfain@... <mailto:Sltfain%40aol.com>

> <mailto:Sltfain%40aol.com> wrote: .....just a thought

> > posted your way concerning your " wish " that you had

> > sclero or RA and that you are certain they are miserable. Not to be

> > mean, but

> > read about sclero and then comment. It is not " miserable. " It is DEADLY.

> >

> >

> > ************************************** Get a sneak peek of the all-new

> > AOL at

> > http://discover.aol.com/memed/aolcom30tour

> <http://discover.aol.com/memed/aolcom30tour>

> > <http://discover.aol.com/memed/aolcom30tour

> <http://discover.aol.com/memed/aolcom30tour>>

> >

> >

[Guest guest]

Lynne - I have read that D augments the immune system, but not that it acts like

prednisone, which would suppress the immune system ( if one has an overactive

immune system, which produces a lot of symptoms, I guess this could be a good

thing)

Do you know of any articles/websites which state that D acts like prednisone and

in what ways, specifically? (I have always had a LOT of increased pain and

overactive immune symptoms with just a tiny bit of D) - thx, Les

Re: rheumatic Worried Dr. Franco may not be able to help

me...-Lynne

Hi Vicki;

The reason you feel better with sunshine is that vit D which by the

way is a steroid and not a vitamin works similarly to prednisone.Maybe

you should do a posting to Mac on the www.roadback.org

site.Both he and his wife have been on it for a couple of years and he

will know for sure if there are any SSers .Lots of people communicate

directly and do not use the BBoard;

Getting tested for mico. is not of much use as you could go broke

doing so.There are a cople hundred types.Just take it for granted that

you have is as 50% of the regular population does.Those that have good

immune systems don't get sick but those of us(bet most are type " A " )who

have a genetic predisposition and weak immune system get seriously

sick.MP docs does not test for mico. when using MP and that is why they

use several different antibiotics but start at very low doses and work

up to the dose we are already taking. Lynne

Vicki wrote:

> Thanks for your response Lynne. I did nto find a SS patient on the MP

> site when I was there a while ago. I was hoping to try whatever

> protocol uses (in addition to mino or doxy) Clymidicin, Zithromax and

> Flagyl, I believe they are for mycoplasmas and chlamydia pneumonia.

> Problem is, I don't know which one(s) I need. I don't know

> specifically what I am infected with to take the right ones. The

> reason I have not done the MP is because when I am in the sun I seem

> to feel my best. His protocol states you need to keep away from the

> sun. Also if I removed all Vit D foods I would have little to eat

> because already I am on specific diet due to my tmjd jaw pain, low

> inflammatory foods, and lack of saliva. I have also really low BP and

> the beta blocker could lower it further. So for these reasons I have

> not tried MP. If a doctor told me this was the only way, I would try

> to find a way. But right now, I have no direction either way and so I

> thought I would try the protocol easiest on

> my body but I still need answers so I know more specifically what to

> take. Has anyone here been on MP? Or is everyone just taking mino?

>

> Lynn, I appreciate your response, I am just opening this up for

> discussion since I dont hear much about MP specifics on here. THANKS!!!

>

> lynneandsantos <lynneandsantos@...

> <mailto:lynneandsantos%40citenet.net>> wrote: Hi Vicki;

> Have you looked at MP and contacted anyone there?Do a search under

> Sjogren's and see if anyone ia being treated for that.:Lynne

>

> Vicki wrote:

>

> > The POINT was that it was TREATABLE, at least the patients I have

> > talked to with certain diseases, and the doctors I have spoken to who

> > have treated those diseases yet wont even try to help with mine,

> > obviously some may not get well even with more treatable diseases, but

> > many can. Getting well is the best thing in the world we could hope

> > for. I have yet to find a SS patient who is now better from Mino

> > alone, even a combo of antibiotics is not enough for the SS patients I

> > found. Yet Dolores you say that THREE diseases of yours are much

> > better now post Mino. That is amazing, you should focus on that, be

> > thankful for that and not forget how bad it was when you were sick

> > before. Because with SS its not so simple so please dont you two make

> > me feel like the bad guy, I am not the enemy. The only thing I am

> > guilty of is complaining too much which doesnt do any good. For the

> > last time, I am not comparing diseases as far as what they do to a

> > person, that would be plain! ignorant and

> > inconsiderate. ALL diseases suck. My sole point was the first sentence

> > above. Not sure why that is so unclear. I'm done with this thread and

> > the support I received, or lack there of.

> >

> > mike rosner <martysfolks2004@...

> <mailto:martysfolks2004%40>

> > <mailto:martysfolks2004%40>> wrote: Well said, ! I have

> > sclero, R/A & MCTD and I was knocking at heaven's door prior to

> > discovering Mino! Miserable is hardly the word! DEADLY! is the correct

> > word. Thanks for pointing that out! Dolores

> >

> > Sltfain@... <mailto:Sltfain%40aol.com>

> <mailto:Sltfain%40aol.com> wrote: .....just a thought

> > posted your way concerning your " wish " that you had

> > sclero or RA and that you are certain they are miserable. Not to be

> > mean, but

> > read about sclero and then comment. It is not " miserable. " It is DEADLY.

> >

> >

> > ************************************** Get a sneak peek of the all-new

> > AOL at

> > http://discover.aol.com/memed/aolcom30tour

> <http://discover.aol.com/memed/aolcom30tour>

> > <http://discover.aol.com/memed/aolcom30tour

> <http://discover.aol.com/memed/aolcom30tour>>

> >

> >

[Guest guest]

Good morning Vicki;

Seco-steroid D acts like pred but not nearly as harshly.Yes,I expect

to start MP one I see my doctor in Nov.AP means Antibiotic Protocol.If

you look around you will find there are many slightly different

protocols.The one most talked about is the Harvard protocol that only

uses minocin 200mg a day.After a while most people see that this one is

not enough and branch out to take different antibiotics.MP is quite

similar to Dr. G. Nicholson's protocol.Just add Olmesartan and remove

the dietary supplements.Bowen protocol that is geared towards MS is

quite similar.

Being a scientist and looking at the big picture I would think you

should stay on mino at least 100mg every other day until you can figure

things out with a good doctor.I had SS overlap with my SD and many of us

do but just don't realise it because the pain is from tip to toe and we

just put it down as SD.I did not have it nearly as badly as you and

today it is all gone except for slight dry eyes now and then and pain in

the left eye but this only happens when I am over tired.

You are doing the right thing by asking about various doctors before

seeing them.Personally I would not go to any that just prescribe the

Harvard protocol as eventually that will jsut be a waste of money.Bide

your time until you find a good one.Maybe checkout the Bowen protocol

and see if they have a doctor list.I have not read up on it for over 3

years so things might have changed a bit. Lynne

Vicki wrote:

> Hi Lynne, I did read about Vit D being not a Vit but a steroid but

> tend to forget since it is labeled vitamin. But I assume it is not

> like prednisone and other icky steroids? I assume it is much milder

> form right?

>

> When people here say " AP " they mean antibiotic protocol right? So when

> someone says they got better on AP we dont really know which

> antibiotics right? or are they referring to something in particular?

>

> Are you using MP Lynne or about to?

>

> I will contact Mac and see what he says. One doctor said SS

> is treated just like RA in regards to antibiotics. I dont recall his

> name. But if that was the case, then all conventional drugs made for

> RA that work for RA patients would help SS, yet they try them on SS

> patients and they always fail. Because a lot more is spent to research

> RA, more drugs are made but they clealry have to be more specific to

> the particular disease to work. Also, if what he says is true, then

> many SS patients would be getting much better off Mino alone. I have

> not found one such primary SS patient.

>

> You are right, mycoplasma testing may not yield the results I seek.

> And it is expensive, these specialty labs to not contract much with

> insurance companies.

>

> lynneandsantos <lynneandsantos@...

> <mailto:lynneandsantos%40citenet.net>> wrote:

> Hi Vicki;

> The reason you feel better with sunshine is that vit D which by the

> way is a steroid and not a vitamin works similarly to prednisone.Maybe

> you should do a posting to Mac on the www.roadback.org

> site.Both he and his wife have been on it for a couple of years and he

> will know for sure if there are any SSers .Lots of people communicate

> directly and do not use the BBoard;

> Getting tested for mico. is not of much use as you could go broke

> doing so.There are a cople hundred types.Just take it for granted that

> you have is as 50% of the regular population does.Those that have good

> immune systems don't get sick but those of us(bet most are type " A " )who

> have a genetic predisposition and weak immune system get seriously

> sick.MP docs does not test for mico. when using MP and that is why they

> use several different antibiotics but start at very low doses and work

> up to the dose we are already taking. Lynne

>

> <mailto:lynneandsantos%40citenet.net>

> <mailto:martysfolks2004%40> <mailto:Sltfain%40aol.com>

> <http://discover.aol.com/memed/aolcom30tour>

> <http://discover.aol.com/memed/aolcom30tour>

> <http://discover.aol.com/memed/aolcom30tour>

> <http://discover.aol.com/memed/aolcom30tour>

>

>

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[Guest guest]

Hi ;

You can find a lot of info on that at several sites.There are quite

a few in French ,Dutch and German.Can you read any of these? If not

check out www.marshallprotocol.com It basically says the same

thing.One thing I can say is to keep your eyes on the bulletin boards

for people with rheumatic diseases who take antibiotics.As fall

progresses you will see a lot more people complaining that their

symptoms are getting worse.This is because we are having less daylight

to give the D and the antibiotics are now creating a herxeimer's

reaction.You want the Herx as it tell you that there is now micoplasma

die off.In the summer we feel better out in the sun as the SECO_STEROID

D acts like prednison and makes us feel better.It stops the die off of

the organisms

Masland wrote:

> Lynne - I have read that D augments the immune system, but not that it

> acts like prednisone, which would suppress the immune system ( if one

> has an overactive immune system, which produces a lot of symptoms, I

> guess this could be a good thing)

> Do you know of any articles/websites which state that D acts like

> prednisone and in what ways, specifically? (I have always had a LOT of

> increased pain and overactive immune symptoms with just a tiny bit of

> D) - thx, Les

> Re: rheumatic Worried Dr. Franco may not be able to help

> me...-Lynne

>

> Hi Vicki;

> The reason you feel better with sunshine is that vit D which by the

> way is a steroid and not a vitamin works similarly to prednisone.Maybe

> you should do a posting to Mac on the www.roadback.org

> site.Both he and his wife have been on it for a couple of years and he

> will know for sure if there are any SSers .Lots of people communicate

> directly and do not use the BBoard;

> Getting tested for mico. is not of much use as you could go broke

> doing so.There are a cople hundred types.Just take it for granted that

> you have is as 50% of the regular population does.Those that have good

> immune systems don't get sick but those of us(bet most are type " A " )who

> have a genetic predisposition and weak immune system get seriously

> sick.MP docs does not test for mico. when using MP and that is why they

> use several different antibiotics but start at very low doses and work

> up to the dose we are already taking. Lynne

>

> Vicki wrote:

>

> > Thanks for your response Lynne. I did nto find a SS patient on the MP

> > site when I was there a while ago. I was hoping to try whatever

> > protocol uses (in addition to mino or doxy) Clymidicin, Zithromax and

> > Flagyl, I believe they are for mycoplasmas and chlamydia pneumonia.

> > Problem is, I don't know which one(s) I need. I don't know

> > specifically what I am infected with to take the right ones. The

> > reason I have not done the MP is because when I am in the sun I seem

> > to feel my best. His protocol states you need to keep away from the

> > sun. Also if I removed all Vit D foods I would have little to eat

> > because already I am on specific diet due to my tmjd jaw pain, low

> > inflammatory foods, and lack of saliva. I have also really low BP and

> > the beta blocker could lower it further. So for these reasons I have

> > not tried MP. If a doctor told me this was the only way, I would try

> > to find a way. But right now, I have no direction either way and so I

> > thought I would try the protocol easiest on

> > my body but I still need answers so I know more specifically what to

> > take. Has anyone here been on MP? Or is everyone just taking mino?

> >

> > Lynn, I appreciate your response, I am just opening this up for

> > discussion since I dont hear much about MP specifics on here. THANKS!!!

> >

> > lynneandsantos <lynneandsantos@...

> <mailto:lynneandsantos%40citenet.net>

> > <mailto:lynneandsantos%40citenet.net>> wrote: Hi Vicki;

> > Have you looked at MP and contacted anyone there?Do a search under

> > Sjogren's and see if anyone ia being treated for that.:Lynne

> >

> > Vicki wrote:

> >

> > > The POINT was that it was TREATABLE, at least the patients I have

> > > talked to with certain diseases, and the doctors I have spoken to who

> > > have treated those diseases yet wont even try to help with mine,

> > > obviously some may not get well even with more treatable diseases, but

> > > many can. Getting well is the best thing in the world we could hope

> > > for. I have yet to find a SS patient who is now better from Mino

> > > alone, even a combo of antibiotics is not enough for the SS patients I

> > > found. Yet Dolores you say that THREE diseases of yours are much

> > > better now post Mino. That is amazing, you should focus on that, be

> > > thankful for that and not forget how bad it was when you were sick

> > > before. Because with SS its not so simple so please dont you two make

> > > me feel like the bad guy, I am not the enemy. The only thing I am

> > > guilty of is complaining too much which doesnt do any good. For the

> > > last time, I am not comparing diseases as far as what they do to a

> > > person, that would be plain! ignorant and

> > > inconsiderate. ALL diseases suck. My sole point was the first sentence

> > > above. Not sure why that is so unclear. I'm done with this thread and

> > > the support I received, or lack there of.

> > >

> > > mike rosner <martysfolks2004@...

> <mailto:martysfolks2004%40>

> > <mailto:martysfolks2004%40>

> > > <mailto:martysfolks2004%40>> wrote: Well said, ! I have

> > > sclero, R/A & MCTD and I was knocking at heaven's door prior to

> > > discovering Mino! Miserable is hardly the word! DEADLY! is the correct

> > > word. Thanks for pointing that out! Dolores

> > >

> > > Sltfain@... <mailto:Sltfain%40aol.com> <mailto:Sltfain%40aol.com>

> > <mailto:Sltfain%40aol.com> wrote: .....just a thought

> > > posted your way concerning your " wish " that you had

> > > sclero or RA and that you are certain they are miserable. Not to be

> > > mean, but

> > > read about sclero and then comment. It is not " miserable. " It is

> DEADLY.

> > >

> > >

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> > > AOL at

> > > http://discover.aol.com/memed/aolcom30tour

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> > >

> > >

[Guest guest]

vicki

have you posted on the MP board? they are best equipped to answer

questions re MP. this board is more for ap.the doc in vancouver who

treats with MP - he and his wife are also on it - says he too felt best

in sun as D can act as a seco-steroid so you feel better initially but

it makes you worse over long run. every fall/winter i feel worse and he

says that is why - the steroid - in the form of the sun - is being taken

away.

monique

[Guest guest]

So then would that mean if I lived in an area that is sunny and warm year long

that I would be better....or worse? It definitely does not cure me but makes me

feel better. Where I live our sunny days are so limited. I dread the 9 months

out of the year that is rainy, cloudy and cold. Depressing even for a healthy

person.

Sauve <moniquesauve@...> wrote: vicki

have you posted on the MP board? they are best equipped to answer

questions re MP. this board is more for ap.the doc in vancouver who

treats with MP - he and his wife are also on it - says he too felt best

in sun as D can act as a seco-steroid so you feel better initially but

it makes you worse over long run. every fall/winter i feel worse and he

says that is why - the steroid - in the form of the sun - is being taken

away.

monique

---------------------------------

Park yourself in front of a world of choices in alternative vehicles.

Visit the Auto Green Center.

[Guest guest]

Hey Vicki;

I am guessing that you either live in Seattle or Vancouver.I lived in

Van. for 4 years and honest to God The weather is enough to give one a

depression.Sunny days are just glorius but few and far between. Lynne

Vicki wrote:

> So then would that mean if I lived in an area that is sunny and warm

> year long that I would be better....or worse? It definitely does not

> cure me but makes me feel better. Where I live our sunny days are so

> limited. I dread the 9 months out of the year that is rainy, cloudy

> and cold. Depressing even for a healthy person.

>

> Sauve <moniquesauve@... <mailto:moniquesauve%40shaw.ca>>

> wrote: vicki

>

> have you posted on the MP board? they are best equipped to answer

> questions re MP. this board is more for ap.the doc in vancouver who

> treats with MP - he and his wife are also on it - says he too felt best

> in sun as D can act as a seco-steroid so you feel better initially but

> it makes you worse over long run. every fall/winter i feel worse and he

> says that is why - the steroid - in the form of the sun - is being taken

> away.

>

> monique

>

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

> Park yourself in front of a world of choices in alternative vehicles.

> Visit the Auto Green Center.

>

>

[Guest guest]

Vicki, I had a thought...Ethel had given us the directions to build an infrared

light box of a sort...Hubby built it, works quite well...warm and nice, very

comforting...could something like this help you? I believe it is for

detox...but might it help mood, depression?? Just a thought. Debbie

Re: rheumatic Re: Worried Dr. Franco may not be able to help

me...-Lynne

Hey Vicki;

I am guessing that you either live in Seattle or Vancouver.I lived in

Van. for 4 years and honest to God The weather is enough to give one a

depression.Sunny days are just glorius but few and far between. Lynne

Vicki wrote:

> So then would that mean if I lived in an area that is sunny and warm

> year long that I would be better....or worse? It definitely does not

> cure me but makes me feel better. Where I live our sunny days are so

> limited. I dread the 9 months out of the year that is rainy, cloudy

> and cold. Depressing even for a healthy person.

>

> Sauve <moniquesauve@... <mailto:moniquesauve%40shaw.ca>>

> wrote: vicki

>

> have you posted on the MP board? they are best equipped to answer

> questions re MP. this board is more for ap.the doc in vancouver who

> treats with MP - he and his wife are also on it - says he too felt best

> in sun as D can act as a seco-steroid so you feel better initially but

> it makes you worse over long run. every fall/winter i feel worse and he

> says that is why - the steroid - in the form of the sun - is being taken

> away.

>

> monique

>

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

> Park yourself in front of a world of choices in alternative vehicles.

> Visit the Auto Green Center.

>

>

[Guest guest]

does prednisone heal you over long term? no. then same with sun acting

as seco-steroid. feel better intiailly but masks worsening of disease.

if you want to understnad read MP site. lots of info there.

monique