scleroderma

[Guest guest]

Hi ;

Your celiac test might not tell the whole truth as that one just

looked for deformed Villi.There is a good possibility you might have it

without villi damage.You might also just have celiac syndrome as one in

four people over 40 has it .It may or may not lead to full blown

celiac.You can do your own testing by going to www.enterolab.com and

ordering the test kit.They will email you the results.My doc says they

are the very best.Did your doc do a blood test for food sensitivities

and send it to U.S. Biotek?You do not have to live with these problems

as they are very fixable.You just have to find out exactly what is

them.Have you checked your PH level? If it is 7 or less you will have

nutrient absorbtion problems that can lead to osteoporosis in a couple

of years of constant acidity. Lynne

Rizun wrote:

> HI Lynne. Yes I do take the probiotics and digestive enzymes daily,

> and was tested for celiac and nothing. Guess I just have to live with it.

> scleroderma

> >

> > Hi everyone. I have scleroderma and have been on the ap since 1998 and

> > doing okay except for a very bad stomach for the past 2 yrs. All kinds

> > of tests done, and nothing came up. My rheumy wants me to go off the

> > minocin but I won't and my family dr. is the one who gives me the

> > scripts. Do you think I should go off mino and go on doxy or something

> > else for about a year to see if this will solve my stomach problem.

> > Fain, I have misplaced your email address. Please con tact me.

> > Thanks. Emmie

> >

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

> >

> > Canada Toolbar : Search from anywhere on the web and bookmark

> > your favourite sites. Download it now!

> >

> >

[Guest guest]

Hi , Probiotics are good and so is Aloe. I have a delicate stomach.

That's what I call it and I'm my own worst enemy at times. Try a liquid diet

for a few days, then go to soft foods and see what disagrees with your system.

Chew well when you get back to solids again and eliminate anything that you know

makes you feel uncomfortable, bloated, constipated or gives you diarrhea or

excess gas! I found out that I felt better after my endoscopy. I also read that

that an endoscopy stretches the esophagus for a period of time. That good, " I

can eat anything feeling only lasted a short time and then the sclerosis either

grew back or the esophagus began to shrink. That is not a cure. Wish there

were a way to swallow a balloon, inflate it just so much, stretch, deflate and

eliminate. But we are not that sophisticated yet surgically. I found that

eating smaller portions or bits of things more often sit better with me. So,

buffets are history! Dolores

ehgooding <ehgooding@...> wrote: Hi ,

Have you tried drinking aloe vera liquid? It might help heal and sooth

I have to take digestive enzymes with EVERY meal. And rotating my foods

(eating most only one time a week) is a big help. It’s also a big pain

until you get used to doing it. LOL El

_____

From: rheumatic [mailto:rheumatic ] On Behalf

Of Rizun

Sent: Thursday, September 06, 2007 9:47 AM

rheumatic

Subject: Re: rheumatic Fw: scleroderma

HI Lynne. Yes I do take the probiotics and digestive enzymes daily, and was

tested for celiac and nothing. Guess I just have to live with it.

scleroderma

>

> Hi everyone. I have scleroderma and have been on the ap since 1998 and

> doing okay except for a very bad stomach for the past 2 yrs. All kinds

> of tests done, and nothing came up. My rheumy wants me to go off the

> minocin but I won't and my family dr. is the one who gives me the

> scripts. Do you think I should go off mino and go on doxy or something

> else for about a year to see if this will solve my stomach problem.

> Fain, I have misplaced your email address. Please con tact me.

> Thanks. Emmie

>

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

>

> Canada Toolbar : Search from anywhere on the web and bookmark

> your favourite sites. Download it now!

>

>

[Guest guest]

Hi ,

Sorry it took so long to get back to you.

I have been on AP since 1997 for RA. I take aloe vera gel not capsules and

Glutamine to protect my gut. If I even get a tummy ache I start the aloe

vera gel I buy at GNC.

You did not say how the scleraderma was doing. If it is doing good.why would

you risk it by stopping the AP? I would look into other modalities for my

stomach. OR you could lower the dosage and see if it effects either the

tummy or scleraderma.

Maybe you could look into IV clindamycin or IV tetracycline in place of the

Minocin.

Let me know what you decide and if you need more info re treatments for the

stomach.

Cooky

Hi everyone. I have scleroderma and have been on the ap since 1998 and doing

okay except for a very bad stomach for the past 2 yrs. All kinds of tests

done, and nothing came up. My rheumy wants me to go off the minocin but I

won't and my family dr. is the one who gives me the scripts. Do you think I

should go off mino and go on doxy or something else for about a year to see

if this will solve my stomach problem. Fain, I have misplaced your

email address. Please con tact me. Thanks. Emmie

<http://geo./serv?s=97359714/grpId=93429/grpspId=1705061610/msgId=4

5770/stime=1189042267/nc1=4617369/nc2=4670547/nc3=3848644>

[Guest guest]

Hi ;

Do not go off the mino.You can lower the dosage if most of your skin

problems have resolved.I only take 100mg 3 times a week.I am so busy now

that I often forget and if I go a whole week with only 100mg I get stiff

and achy with burning hands and arms.That definately reminds me! I had

clindamycin I.V and the oral capsules, neither of which made any

difference as to how I felt.For me the mino works like a super asperinI

have totally lost all the collagen in my skin and was hoping that by not

taking so much mino that I might get some of it back.No such luck,my

skin now sags like a Sharley dog....well not quite but it definately has

no tone to it.

For lots of info on leaky gut and yeast check our the Roadback

site,they have tons of info.Use the " search " or just make a posting

there.A Friend will probably give you lots more info.Did you do that

blood test for food sensitivities that I told you about?You can be

certain you have several,all SDers do unless extremely lucky.Probiotics

alone will not help at all if that is the case. Lynne G./SD

C Stonkey wrote:

> Hi ,

>

> Sorry it took so long to get back to you.

>

> I have been on AP since 1997 for RA. I take aloe vera gel not capsules and

> Glutamine to protect my gut. If I even get a tummy ache I start the aloe

> vera gel I buy at GNC.

>

> You did not say how the scleraderma was doing. If it is doing good.why

> would

> you risk it by stopping the AP? I would look into other modalities for my

> stomach. OR you could lower the dosage and see if it effects either the

> tummy or scleraderma.

>

> Maybe you could look into IV clindamycin or IV tetracycline in place

> of the

> Minocin.

>

> Let me know what you decide and if you need more info re treatments

> for the

> stomach.

>

> Cooky

>

> Hi everyone. I have scleroderma and have been on the ap since 1998 and

> doing

> okay except for a very bad stomach for the past 2 yrs. All kinds of tests

> done, and nothing came up. My rheumy wants me to go off the minocin but I

> won't and my family dr. is the one who gives me the scripts. Do you

> think I

> should go off mino and go on doxy or something else for about a year

> to see

> if this will solve my stomach problem. Fain, I have misplaced your

> email address. Please con tact me. Thanks. Emmie

>

> <http://geo./serv?s=97359714/grpId=93429/grpspId=1705061610/msgId=4>

>

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[Guest guest]

Thanks, Cooky. I do not intend to quit the AP. My rheumy has been trying to do

it for years now, but I won't give in. I don't think the minocin is bothering

me, because I stopped taking it for 2 weeks at my rheumy's suggestion, but I

still have the stomach problems. I will try the aloe vera though. Thanks.

Will let you know how it works. My scleroderma at the beginning was very severe

skin problems, it was soooooooooooo tight, but now I can do everything and I

have wrinkles, yeah. I am 69, so that is expected. I don't know if we have a

GNC store in Canada, but I will check tomorrow. What brand do you buy? Thanks

again.

RE: rheumatic Fw: scleroderma

Hi ,

Sorry it took so long to get back to you.

I have been on AP since 1997 for RA. I take aloe vera gel not capsules and

Glutamine to protect my gut. If I even get a tummy ache I start the aloe

vera gel I buy at GNC.

You did not say how the scleraderma was doing. If it is doing good.why would

you risk it by stopping the AP? I would look into other modalities for my

stomach. OR you could lower the dosage and see if it effects either the

tummy or scleraderma.

Maybe you could look into IV clindamycin or IV tetracycline in place of the

Minocin.

Let me know what you decide and if you need more info re treatments for the

stomach.

Cooky

Hi everyone. I have scleroderma and have been on the ap since 1998 and doing

okay except for a very bad stomach for the past 2 yrs. All kinds of tests

done, and nothing came up. My rheumy wants me to go off the minocin but I

won't and my family dr. is the one who gives me the scripts. Do you think I

should go off mino and go on doxy or something else for about a year to see

if this will solve my stomach problem. Fain, I have misplaced your

email address. Please con tact me. Thanks. Emmie

<http://geo./serv?s=97359714/grpId=93429/grpspId=1705061610/msgId=4

5770/stime=1189042267/nc1=4617369/nc2=4670547/nc3=3848644>

[Guest guest]

I use the GNC brand. Its in a big bottle and tastes bad. I stick it in the

middle of my cupped tongue and it doesn't touch the sides of the tongue

where the taste buds are and I take a sip of water with it to make it go

down. Glutamine is good to use also and it is a pill and not real expensive.

I have a few emails I will send you about stomach problems. Hope this works

for you.

I am so glad to hear about your wrinkles:-) If you could get the

clindamycin IV's you may get better faster.

Hugs,

Cooky

Thanks, Cooky. I do not intend to quit the AP. My rheumy has been trying to

do it for years now, but I won't give in. I don't think the minocin is

bothering me, because I stopped taking it for 2 weeks at my rheumy's

suggestion, but I still have the stomach problems. I will try the aloe vera

though. Thanks. Will let you know how it works. My scleroderma at the

beginning was very severe skin problems, it was soooooooooooo tight, but now

I can do everything and I have wrinkles, yeah. I am 69, so that is expected.

I don't know if we have a GNC store in Canada, but I will check tomorrow.

What brand do you buy? Thanks again.

----- Original Message -----

[Guest guest]

Hi, I have SD and RA...my SD has always been internal, lung, GI, esophagus,

etc. Besides swelling of my fingers, I have a subset of SD called Anti TH-TO. In

this form, there is rarely, any skin involvement, mostly internal organs. I have

been receiving a form of chemo for the lung involvement and am doing well. I

would definitely request that the ANA lab work be done, and make note of the

pattern and titer. Dr. Hendriks Whitman in Summit, NJ is my regular rheumy.

Hope this helps, Debbiel

rheumatic scleroderma

Hi everyone. I have had scleroderma diagnosed since 1994 and have been on

the protocol since 1998. I have a question. My middle son has been very

sick for about a year, and has lost 40 lbs. He is only 130 now and looks

terrible. He is having a lot of esophagel problems and not eating because

it is so sore. I was wondering if he could have scleroderma on the inside

only, because his skin is normal. He is seeing a specialist in 2 weeks, and

I would like to give him all the info I can. My mother had MS. Hope

someone can help me in this problem. Thanks. Emma

[Guest guest]

Do you have pulmonary fibrosis? If so, how bad did it get before you started

the chemo treatments?

Sandy Decker

MCTD, pulmonary fibrosis, etc.

rheumatic

From: Debbullwinkle@...

Date: Wed, 6 May 2009 14:52:48 -0400

Subject: Re: rheumatic scleroderma

Hi, I have SD and RA...my SD has always been internal, lung, GI, esophagus, etc.

Besides swelling of my fingers, I have a subset of SD called Anti TH-TO. In this

form, there is rarely, any skin involvement, mostly internal organs. I have been

receiving a form of chemo for the lung involvement and am doing well. I would

definitely request that the ANA lab work be done, and make note of the pattern

and titer. Dr. Hendriks Whitman in Summit, NJ is my regular rheumy.

Hope this helps, Debbiel

rheumatic scleroderma

Hi everyone. I have had scleroderma diagnosed since 1994 and have been on

the protocol since 1998. I have a question. My middle son has been very

sick for about a year, and has lost 40 lbs. He is only 130 now and looks

terrible. He is having a lot of esophagel problems and not eating because

it is so sore. I was wondering if he could have scleroderma on the inside

only, because his skin is normal. He is seeing a specialist in 2 weeks, and

I would like to give him all the info I can. My mother had MS. Hope

someone can help me in this problem. Thanks. Emma

[Guest guest]

Hi I also have SD with Pulmonary Fibrosis.  Actually, I was diagnosed first with

Pulmonary Fibrosis and then after they found that I had raynaud's, weight loss,

& other internal organ damage, they diagnosed the scleroderma.  The first thing

they offered me was chemo and steroids, to keep me comfortable, they said.  The

first thing I did was refuse the medication. I didn't want to just be kept

comfortable, I wanted to try the cure, Henry Scammell wrote about.  I guess I am

one of the lucky ones. I had just heard about A/P, so I went to Dr. Trentham in

Boston and he put me on Minocin 100mg twice daily.  All of my symptoms began to

disappear and my lung tissue is in the process of regenerating. I still take

Minocin along with other antibiotics and those nay say docs who said I didn't

have long to live are so shocked to see me getting better. I also didn't have

any problems with my skin, hands and face.  I looked that up and it is a form

called

Scleroderma sine sclerodactyly.  Both hands are totally straight without any

deformity.  The face is now getting wrinkles from the excessive collagen the

scleroderma had deposited in my face which has now gone down.  I didn't expect

to be wrinkle free forever.  I turned 72 last August and am aging gracefully,

Not too rapidly and I don't look sick anymore.  Gained back a few lbs. I had

lost that gave me a sick look.  I am normal and leaving for Puerto Rico and the

Virgin Islands this weekend.  Happy Mother's Day to all you Mother's &

Daughter's.The best to all, Dolores & Mike 

From: Sandy Ball Decker <sandykayball@...>

Subject: RE: rheumatic scleroderma

" rheumatic " <rheumatic >, debbullwinkle@...

Date: Wednesday, May 6, 2009, 4:14 PM

Do you have pulmonary fibrosis? If so, how bad did it get before you started the

chemo treatments?

Sandy Decker

MCTD, pulmonary fibrosis, etc.

rheumatic@grou ps.com

From: Debbullwinkle@ fuse.net

Date: Wed, 6 May 2009 14:52:48 -0400

Subject: Re: rheumatic scleroderma

Hi, I have SD and RA...my SD has always been internal, lung, GI, esophagus, etc.

Besides swelling of my fingers, I have a subset of SD called Anti TH-TO. In this

form, there is rarely, any skin involvement, mostly internal organs. I have been

receiving a form of chemo for the lung involvement and am doing well. I would

definitely request that the ANA lab work be done, and make note of the pattern

and titer. Dr. Hendriks Whitman in Summit, NJ is my regular rheumy.

Hope this helps, Debbiel

rheumatic scleroderma

Hi everyone. I have had scleroderma diagnosed since 1994 and have been on

the protocol since 1998. I have a question. My middle son has been very

sick for about a year, and has lost 40 lbs. He is only 130 now and looks

terrible. He is having a lot of esophagel problems and not eating because

it is so sore. I was wondering if he could have scleroderma on the inside

only, because his skin is normal. He is seeing a specialist in 2 weeks, and

I would like to give him all the info I can. My mother had MS. Hope

someone can help me in this problem. Thanks. Emma

[Guest guest]

Hi Emma,  Yes Scleroderma attacks every part of your body.  Sometimes, it starts

inside and then it shows up on the outside of the body, Sometimes it starts on

the outside and then goes internal.  What you see on the outside is also

happening inside and visa versa.  My heart, lungs, liver, kidneys and especially

my esophagus were all inflammed causing me to also lose 40 lbs.  It wasn't until

all my organs were damaged that they diagnosed Scleroderma and only because it

was winter and my hands showed signs of Raynaud's phenomena.  First the fingers

turn blanched white like all the blood has been sucked out of them.  In another

minute or two, they turn blue and are very cold.  Run them under warm water for

a few minutes and they turn bright red. After a few minutes the whole phenomena

disappears and your hands and fingers are back to normal.   Raynaud's patients

learn to carry a pair of gloves with them always even in summer.  Sometimes an

air-conditioned room in summer can trigger it.  Mine eventually disappeared

when I started taking the Minocin tabs.  Dolores & Mike

From: DEBBIE GIBSON <Debbullwinkle@...>

Subject: Re: rheumatic scleroderma

rheumatic

Date: Wednesday, May 6, 2009, 2:52 PM

Hi, I have SD and RA...my SD has always been internal, lung, GI, esophagus, etc.

Besides swelling of my fingers, I have a subset of SD called Anti TH-TO. In this

form, there is rarely, any skin involvement, mostly internal organs. I have been

receiving a form of chemo for the lung involvement and am doing well. I would

definitely request that the ANA lab work be done, and make note of the pattern

and titer. Dr. Hendriks Whitman in Summit, NJ is my regular rheumy.

Hope this helps, Debbiel

rheumatic scleroderma

Hi everyone. I have had scleroderma diagnosed since 1994 and have been on

the protocol since 1998. I have a question. My middle son has been very

sick for about a year, and has lost 40 lbs. He is only 130 now and looks

terrible. He is having a lot of esophagel problems and not eating because

it is so sore. I was wondering if he could have scleroderma on the inside

only, because his skin is normal. He is seeing a specialist in 2 weeks, and

I would like to give him all the info I can. My mother had MS. Hope

someone can help me in this problem. Thanks. Emma

[Guest guest]

Hi,

is your son complaining of esophageal reflux, or stomach pain after meals?

has he ever been tested for h. pylori, a bacteria that causes ulcers of the

stomach

Barrett's esophagus? Has a gastro ever performed an endoscopic examination on

him?

EMAILING FOR THE GREATER GOOD

Join me

rheumatic

From: Debbullwinkle@...

Date: Wed, 6 May 2009 14:52:48 -0400

Subject: Re: rheumatic scleroderma

Hi, I have SD and RA...my SD has always been internal, lung, GI, esophagus, etc.

Besides swelling of my fingers, I have a subset of SD called Anti TH-TO. In this

form, there is rarely, any skin involvement, mostly internal organs. I have been

receiving a form of chemo for the lung involvement and am doing well. I would

definitely request that the ANA lab work be done, and make note of the pattern

and titer. Dr. Hendriks Whitman in Summit, NJ is my regular rheumy.

Hope this helps, Debbiel

rheumatic scleroderma

Hi everyone. I have had scleroderma diagnosed since 1994 and have been on

the protocol since 1998. I have a question. My middle son has been very

sick for about a year, and has lost 40 lbs. He is only 130 now and looks

terrible. He is having a lot of esophagel problems and not eating because

it is so sore. I was wondering if he could have scleroderma on the inside

only, because his skin is normal. He is seeing a specialist in 2 weeks, and

I would like to give him all the info I can. My mother had MS. Hope

someone can help me in this problem. Thanks. Emma

[Guest guest]

No, I have a lung disease, courtesy of the RA and SD called Bronchiolitis

Obliterans...Obliterative Bronchiolitis...my body was rejecting my lungs...the

bronchioles were being obliterated. Without them, your lungs cannot carry oxygen

to your body...without bronchioles, you are pretty well screwed. The form of

chemo I received is called Photopheresis...it completely stopped my lung

disease...You can read about it at www.therakos.com.

Debbie

rheumatic scleroderma

Hi everyone. I have had scleroderma diagnosed since 1994 and have been on

the protocol since 1998. I have a question. My middle son has been very

sick for about a year, and has lost 40 lbs. He is only 130 now and looks

terrible. He is having a lot of esophagel problems and not eating because

it is so sore. I was wondering if he could have scleroderma on the inside

only, because his skin is normal. He is seeing a specialist in 2 weeks, and

I would like to give him all the info I can. My mother had MS. Hope

someone can help me in this problem. Thanks. Emma

[Guest guest]

Hi Sandy;

Maybe you should read some info that is on the MP site.It is

aimed at Sarcoidosis but since SD and Sarc are extremely close relatives

compared to other rheumatoid diseases this might interest you.Lung

problems can be resolved fairly well with antibiotics.

I am not telling you to try MP unless you want to.Ap has put my

SD into total remission but if I forget to take my mino or zith for a

few days I feel it creeping back.My hands get stiff,my legs are sore and

arms start to burn again so I know that I definately am not cured.My

sister who has Lupus/MCTD is using MP but has not been on it long enough

to know if it is helping yet.She comes to this board now and then so she

might see this post and let you know how she is doing.Lupies in general

cannot tolorate our high dose antibiotics so MP is a good protocol for her.

This article is very long and covers just about every thing you

need to know from how to interpret tests to lung problems.

Lynne G./SD

http://marshallprotocol.com/view_topic.php?id=3094 & forum_id=37 & highlight=+sclero\

derma+and+lung+fibrosis

<http://marshallprotocol.com/view_topic.php?id=3094 & forum_id=37 & highlight=+scler\

oderma+and+lung+fibrosis>

>

>

>

> Do you have pulmonary fibrosis? If so, how bad did it get before you

> started the chemo treatments?

>

> Sandy Decker

>

> MCTD, pulmonary fibrosis, etc.

>

> rheumatic <mailto:rheumatic%40>

> From: Debbullwinkle@... <mailto:Debbullwinkle%40fuse.net>

> Date: Wed, 6 May 2009 14:52:48 -0400

> Subject: Re: rheumatic scleroderma

>

> Hi, I have SD and RA...my SD has always been internal, lung, GI,

> esophagus, etc. Besides swelling of my fingers, I have a subset of SD

> called Anti TH-TO. In this form, there is rarely, any skin

> involvement, mostly internal organs. I have been receiving a form of

> chemo for the lung involvement and am doing well. I would definitely

> request that the ANA lab work be done, and make note of the pattern

> and titer. Dr. Hendriks Whitman in Summit, NJ is my regular rheumy.

> Hope this helps, Debbiel

> rheumatic scleroderma

>

> Hi everyone. I have had scleroderma diagnosed since 1994 and have been on

> the protocol since 1998. I have a question. My middle son has been very

> sick for about a year, and has lost 40 lbs. He is only 130 now and looks

> terrible. He is having a lot of esophagel problems and not eating because

> it is so sore. I was wondering if he could have scleroderma on the inside

> only, because his skin is normal. He is seeing a specialist in 2

> weeks, and

> I would like to give him all the info I can. My mother had MS. Hope

> someone can help me in this problem. Thanks. Emma

>

>

[Guest guest]

Yes, my brother has scleroderma and has Raynaud's syndrome. Poor guy, the

skin has thickened on his hands so it's hard to bend his fingers and

sometimes the skin splits at the joints. I've bought him every kind of hand

cream that I could find but you know how that is.... He's had the internal

damage, too, especially to his esophagus. I never asked exactly how much

weight he lost due to the illness but it was substantial.

mike rosner writes:

> Hi Emma, Yes Scleroderma attacks every part of your body. Sometimes, it

starts inside and then it shows up on the outside of the body, Sometimes it

starts on the outside and then goes internal. What you see on the outside is

also happening inside and visa versa. Â My heart, lungs, liver, kidneys and

especially my esophagus were all inflammed causing me to also lose 40 lbs. It

wasn't until all my organs were damaged that they diagnosed Scleroderma and only

because it was winter and my hands showed signs of Raynaud's phenomena. First

the fingers turn blanched white like all the blood has been sucked out of them.Â

In another minute or two, they turn blue and are very cold. Run them under

warm water for a few minutes and they turn bright red. After a few minutes the

whole phenomena disappears and your hands and fingers are back to normal. Â

Raynaud's patients learn to carry a pair of gloves with them always even in

summer. Sometimes an

> air-conditioned room in summer can trigger it. Mine eventually disappeared

when I started taking the Minocin tabs. Dolores & Mike

[Guest guest]

Someone's story using LDN for scleroderma;

http://preview.tinyurl.com/ow5qb6

>

> Does anyone have personal experience with scleroderma/ldn treatment? What

would be the best information to send someone who has it? This is for a girl,

aged 19, the daughter of a friend. They have taken her to every " expert " in the

US.

>

> Thanks for all information. Jan

>

[Guest guest]

Scleroderma is an auto immune disease so would likely be

helped by

LDN.

Go the list website messages page and put scleroderma in the

search

box. There were many recent messages.

Be sure to spell it correctly to ensure you find the messages.

Garnet

Snow Dianna wrote:

>

>

> Has anyone used this for sclederoma??

>

>

[Guest guest]

Hi,  I was also diagnosed with scleroderma 4 years ago and very ill.  I was

bedridden.  My chest was as hard as stone.  My fingers were curling, I could not

breathe as my lungs were sclerosed,  I was close to dying, had lost 40 lbs and

was grossly anemic.  My fingers were  turning red white & blue from Raynauds.  I

could not hold in any food whatsoever  I ached from head to toe and all my

muscles were in spasms. I had 4 heart surgeries and the rheumatologists said

there was no cure nor any hope of me living much longer.  I  was so fortunate. 

One of the ladies that posts on this site wrote and told me about the antibiotic

therapy.  Within a month, I got an appointment with a specialist that believed

in the A/P and he prescribed Minocin. Literally, within 6 months, I returned

from the land of the living dead.  My skin got soft, Raynauds disappeared.  I

gained back 20 of the 40 lbs I had lost.  The aching muscles subsided Strength

came

back into my arms.  My heart started acting normal and I went off the statins.

No more cholesterol problems. Even went off some of the many heart medicines I

was taking.  My sclerotic lungs began to heal.  I am still on antibiotics.  I

will always be.  It has saved and prolonged my life.  I am not healed. I am in

remission.  Wherever you are, find a doc that will put your mom on the

antibiotic protocol immediately.  There is no time to waste.  Your mom is dying

from a disease that is of infectious original and she needs to get that

infection under control. There are other things she can do once she gets that

part under control.  She will make changes in her diet, exercise, and will add

other therapies that will enhance her healing,  but she must start with the A/P

very soon.  Best to you, Dolores & Mike ---P.S.  I commend you for wanting to

help your mom.  You are a good person.    

From: tcarrollo97 <tcarrollo97@...>

Subject: rheumatic scleroderma

rheumatic

Date: Monday, October 26, 2009, 8:54 PM

 

Hi,

New at this so please be patient with my post. My mother has scleroderma she was

diganosed 4 years she is currently venturing the AP Protocol. Her hands are

curled up the skin on her arms is up to her elbows, she has lots of ulcers on

her fingers. Her mouth is affected a little. Her husband does excersises with

her daily massages her hands and arms daily and soaks them in epson salts. Is

there anyone that can give some insight on how to relieve the pain in her hands?

She says they burn all the time.

Thanks all

[Guest guest]

Dear Beth,

This has been in a clinical trial for some time and this is updated as of June,

2010. I suppose that Gleevec is approved for this trial, since it has already

been approved by FDA for other diseases, even alzheimer's. Is there no end to

what this miraculous drug will do? Makes you wonder how all of these diseases

being treated with Gleevec are connected???? I hope it works for your friend's

mother. One more notch in the Gleevec dossier. I hasten to add that Sprycel is

also being used for another disease for which I am at a loss to tell you at this

moment. As more research is being done, there will be more diseases being

treated by off label drugs not originally intended for the disease. They are

called " orphan diseases " for which there are no specific therapies for it. I

found this at a clinical trial website. I would certain welcome any discourse

someone else would have. Thank you for your reply to the original post.

" This is a Phase IIa, single center, prospective open label clinical trial of

Gleevec in patients with systemic sclerosis. All patients will be treated with

active drug for 12 months. The primary objective of this study will be to

determine the safety and tolerability of Gleevec in patients with systemic

sclerosis, but important secondary outcomes of relevance will be improvement in

disease status as defined by skin scores and indices of pulmonary function. "

***********

I found another use for Gleevec:

" Dermatofibrosarcoma protuberans (DFSP), a type of cancer (sarcoma) in which

cells in the tissue beneath the skin divide uncontrollably. Glivec is used to

treat adults with DFSP that cannot be removed with surgery, and in adults who

are not eligible for surgery when the cancer has returned after treatment or has

spread to other parts of the body. "

http://tinyurl.com/457w9bw

********************

FYI,

Lottie Duthu