RE: My Mom's Scleroderma dx & No Help From Dr.s

[Guest guest]

I'm sorry I don't have any advice. But I do have a lot of empathy for you.

None of my many doctors agree either, and none of them believe in AP.

I don't know what to do either.

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[Guest guest]

i just want to say that you are such a great daughter to help your mom out. my

folks havent ever helped me with my health issues, nor most of my friends. just

your posting here your concerns shows what a great daughter you are, my folks

would never do that.

 

anyway, i have read people recover from Scleoderma and Lupus using AP. Just

because the doctors dont believe in it doens't mean much, because all doctors

really know to do is poison us with toxic drugs and cut us (surgery), rarely do

doctors heal, so don't you and your mom lose hope.

From: Cheryl <cheryld10@...>

Subject: rheumatic My Mom's Scleroderma dx & No Help From Dr.s

rheumatic

Date: Monday, September 22, 2008, 10:17 PM

Hi Everyone!

I posted to this group about 2 years ago when my mom first started

experiencing Reynaud's Phenomenon. She was recently diagnosed 2

months ago with Scleoderma and possibly Lupus. She has quite a bit of

lung fibrosis and she coughs a lot. Her swallowing isn't too bad. Her

tightness in her hands have been a little better. I started noticing

her hands being shiny and her fingers being puffy several months ago.

I've done a little bit of research on antibiotic therapy. My mom's

rheumatologist doesn't think it works. He didn't even want to start

my mom up on any meds until the pulmonary doctor checked my mom for

infection in her respiratory track. The pulmonary doctor got mad and

wants my mom on Methotrexate. The rheumatologist says that that drug

will kill my mom, who is 74 years old.

This is all so confusing and scary. My mom depends on me for help and

I can't find the answers. Her doctors don't agree with each other and

they think that antibiotic therapy is worthless.

Any advice would be greatly appreciated. Thank you in advance!

Blessings…

Cheryl

[Guest guest]

Hello Cheryl,

I am an RA sufferer and have been on AP for only 3 months now, but

already getting some much better days. My Mom's friend who is nearly

80 has just been diagnosed with RA also, and her rheumatologist won't

give her methotrexate (mtx) because of her age, as he says the disease

progresses more slowly in the elderly.

I don't have any personal experience of scleroderma, apart from what I

read DAILY on the roadback bulletin board (www.roadback.org). It seems

that AP works VERY WELL for sclero, whatever your mom's doctors think.

If I were you I would definitely consider the AP, and just use NSAIDs

or even a LOW dose steroid (eg prednisone) if the herxing becomes too

painful.

AP can take some guts to follow through, especially if your herxing is

bad, but it doesn't end up wrecking the rest of your body, and in the

case of scleroderma it can really save lives. You can find a list of

AP doctors in your area from this site and from Roadback.

Good luck and God bless to you and your mom

Kate

>

> Hi Everyone!

>

> I posted to this group about 2 years ago when my mom first started

> experiencing Reynaud's Phenomenon. She was recently diagnosed 2

> months ago with Scleoderma and possibly Lupus. She has quite a bit of

> lung fibrosis and she coughs a lot. Her swallowing isn't too bad. Her

> tightness in her hands have been a little better. I started noticing

> her hands being shiny and her fingers being puffy several months ago.

>

> I've done a little bit of research on antibiotic therapy. My mom's

> rheumatologist doesn't think it works. He didn't even want to start

> my mom up on any meds until the pulmonary doctor checked my mom for

> infection in her respiratory track. The pulmonary doctor got mad and

> wants my mom on Methotrexate. The rheumatologist says that that drug

> will kill my mom, who is 74 years old.

>

> This is all so confusing and scary. My mom depends on me for help and

> I can't find the answers. Her doctors don't agree with each other and

> they think that antibiotic therapy is worthless.

>

> Any advice would be greatly appreciated. Thank you in advance!

>

> Blessings…

> Cheryl

>

[Guest guest]

Hi, Cheryl!

I just don't understand how rheumatologists can refuse to believe in the

antibiotic protocol (AP) without even trying it!

ly, I was doubtful when I heard of it because I thought, " Everybody

knows antibiotics are for bacteria not autoimmune diseases! " Then, I read

the book, The New Arthritis Breakthrough, after meeting a new friend who is

intelligent, a nurse, and an aggressive proponent of AP after experiencing

its benefits.

It certainly sounded worth the effort to try! I found a doc through her,

and this group on my own, and I started AP for three autoimmune disorders in

March. It has been a miracle for me. Instead of a steady decline, my

diseases have reversed in their tracks. (I have rheumatoid, psoriatic, and

fibromyalgia. I could barely walk when I started, and I am only 41)

I don't have scleroderma, but I have read many positive testimonies on this

website. Be sure to visit the group homepage (you can use a link usually

found on the right side of these posts). There, you should be able to

search the archives. I think it was this summer that there were some SD

updates from people who started AP years ago. They were exciting to read

because it is so rare for SD patients to have hope, much less their lives

returned to them.

I pray you can find a helpful AP doc soon!

Blessings!

Terri

_____

From: rheumatic [mailto:rheumatic ] On Behalf

Of Cheryl

Sent: Tuesday, September 23, 2008 1:18 AM

rheumatic

Subject: rheumatic My Mom's Scleroderma dx & No Help From Dr.s

Hi Everyone!

I posted to this group about 2 years ago when my mom first started

experiencing Reynaud's Phenomenon. She was recently diagnosed 2

months ago with Scleoderma and possibly Lupus. She has quite a bit of

lung fibrosis and she coughs a lot. Her swallowing isn't too bad. Her

tightness in her hands have been a little better. I started noticing

her hands being shiny and her fingers being puffy several months ago.

I've done a little bit of research on antibiotic therapy. My mom's

rheumatologist doesn't think it works. He didn't even want to start

my mom up on any meds until the pulmonary doctor checked my mom for

infection in her respiratory track. The pulmonary doctor got mad and

wants my mom on Methotrexate. The rheumatologist says that that drug

will kill my mom, who is 74 years old.

This is all so confusing and scary. My mom depends on me for help and

I can't find the answers. Her doctors don't agree with each other and

they think that antibiotic therapy is worthless.

Any advice would be greatly appreciated. Thank you in advance!

Blessings.

Cheryl

[Guest guest]

Hi Cheryl,  I am 72 and have systemic scleroderma also.  I was diagnosed in

October of 2005 after being very sick for most of that year.  Looking back, I

wasted a lot of time not knowing about A/P. I chanced upon the info when a

wonderful lady from the RBF site told me about A/P and I read the same books you

read.  Plus the books by Scammell.  " The Proven Therapy That Can Save Your

Life "   I don't have the book in front of me at the moment as I am writing from a

borrowed computer.  I went to see Doc T. in Boston.  I started Minocin

immediately.  The improvement was nothing short of miraculous.  I am still on

antibiotics 3 years later and although no yet cured, went into a remissive state

that has stopped the progression of the disease.  Tell Mom, to change docs if

they are wasting her time and theirs arguing about whether it works or not. 

Time is precious.  Fly wherever you have to go to get started and once on

antibiotics, you can show

them how well it works.  Now, I don't depend on whether the current doc likes

it or not. Since I travel a bit more than the average old lady, I just walk into

any docs office and let them know that I have S/D.  I hand them the list of

blood work I need and my current bottle of antibiotics along with the copy of

the protocol I am on. Most have never heard of this, but because I am adamant

about what I want, they write the script.  After all, who are they to argue with

success.  Don't let them rule Mom's life. Just let these young and old docs who

think they know everything, learn something new for a change and if they don't

comply, walk into another office.  Hope Mom gets on the A/P soon.  Good luck and

don't waste time c/o about docs. 

Sometimes you can't teach an old dog new tricks, so you go get a new dog.  

Dolores

From: Brett & Terri <tdowney2@...>

Subject: RE: rheumatic My Mom's Scleroderma dx & No Help From Dr.s

rheumatic

Date: Tuesday, September 23, 2008, 6:50 AM

Hi, Cheryl!

I just don't understand how rheumatologists can refuse to believe in the

antibiotic protocol (AP) without even trying it!

ly, I was doubtful when I heard of it because I thought, " Everybody

knows antibiotics are for bacteria not autoimmune diseases! " Then, I read

the book, The New Arthritis Breakthrough, after meeting a new friend who is

intelligent, a nurse, and an aggressive proponent of AP after experiencing

its benefits.

It certainly sounded worth the effort to try! I found a doc through her,

and this group on my own, and I started AP for three autoimmune disorders in

March. It has been a miracle for me. Instead of a steady decline, my

diseases have reversed in their tracks. (I have rheumatoid, psoriatic, and

fibromyalgia. I could barely walk when I started, and I am only 41)

I don't have scleroderma, but I have read many positive testimonies on this

website. Be sure to visit the group homepage (you can use a link usually

found on the right side of these posts). There, you should be able to

search the archives. I think it was this summer that there were some SD

updates from people who started AP years ago. They were exciting to read

because it is so rare for SD patients to have hope, much less their lives

returned to them.

I pray you can find a helpful AP doc soon!

Blessings!

Terri

_____

From: rheumatic@grou ps.com [mailto:rheumatic@grou ps.com] On Behalf

Of Cheryl

Sent: Tuesday, September 23, 2008 1:18 AM

rheumatic@grou ps.com

Subject: rheumatic My Mom's Scleroderma dx & No Help From Dr.s

Hi Everyone!

I posted to this group about 2 years ago when my mom first started

experiencing Reynaud's Phenomenon. She was recently diagnosed 2

months ago with Scleoderma and possibly Lupus. She has quite a bit of

lung fibrosis and she coughs a lot. Her swallowing isn't too bad. Her

tightness in her hands have been a little better. I started noticing

her hands being shiny and her fingers being puffy several months ago.

I've done a little bit of research on antibiotic therapy. My mom's

rheumatologist doesn't think it works. He didn't even want to start

my mom up on any meds until the pulmonary doctor checked my mom for

infection in her respiratory track. The pulmonary doctor got mad and

wants my mom on Methotrexate. The rheumatologist says that that drug

will kill my mom, who is 74 years old.

This is all so confusing and scary. My mom depends on me for help and

I can't find the answers. Her doctors don't agree with each other and

they think that antibiotic therapy is worthless.

Any advice would be greatly appreciated. Thank you in advance!

Blessings.

Cheryl

[Guest guest]

Cheryl,

Where do you live? Are you close to one of the antibiotic Drs? One of the ones

that use the AP, Antibiotic Protocol? My AP Dr is in NJ, I think he is one of

the best...there is one in Boston, still practicing, I believe and another one

in CA and one in MI...I know there are more....these are my favorites. Once the

diagnosis is complete...and the tests have been run, why not find a Dr to put

your Mom on the antibiotic protocol? It could work and has worked...it did for

me for over 2 years.

I know many on here that presented with lung fibrosis and the lung fibrosis has

stopped using antibiotics.

I would have them ck the Lupus tests rather closely tho, and start a notebook

for your mom's labs and take it with her to every appt...

There is a treatment for her lungs, called photopheresis that is KNOWN to stop

the lung fibrosis. You can research that more at www.therakos.com This is the

company that makes the photopheresis units. Your mom's pulmonary Dr should know

about this tx. One does have to fight ins companies for it, but it is doable. I

am one of the patients on here with SD and RA and have been receiving

photopheresis for 3 yrs.

I am sure everyone here will have many ideas...so I will stop now...it is a lot

to digest. Please continue to post and ask questions.

Debbie in Cincinnati

rheumatic My Mom's Scleroderma dx & No Help From Dr.s

Hi Everyone!

I posted to this group about 2 years ago when my mom first started

experiencing Reynaud's Phenomenon. She was recently diagnosed 2

months ago with Scleoderma and possibly Lupus. She has quite a bit of

lung fibrosis and she coughs a lot. Her swallowing isn't too bad. Her

tightness in her hands have been a little better. I started noticing

her hands being shiny and her fingers being puffy several months ago.

I've done a little bit of research on antibiotic therapy. My mom's

rheumatologist doesn't think it works. He didn't even want to start

my mom up on any meds until the pulmonary doctor checked my mom for

infection in her respiratory track. The pulmonary doctor got mad and

wants my mom on Methotrexate. The rheumatologist says that that drug

will kill my mom, who is 74 years old.

This is all so confusing and scary. My mom depends on me for help and

I can't find the answers. Her doctors don't agree with each other and

they think that antibiotic therapy is worthless.

Any advice would be greatly appreciated. Thank you in advance!

Blessings.

Cheryl