Re: SD (Systemic)

[Guest guest]

I have lung involvment (SD) and minocin helped me. I don't hike or jog anymore

but I walk a lot with no shortness of breath. My two last CAT scan of the

 lung showed it didn't get worsed. I definitely recommand you to do AP. can I

ask you where do you live? I would like to do IV clindamycin. My doc. is not

familiar with IV antibiotic.

soheila    

From: valarmie <valarmie@...>

Subject: rheumatic SD (Systemic)

rheumatic

Date: Wednesday, April 14, 2010, 9:06 AM

 

Hi everyone.

I was diagnosed with CREST about 18 years ago!!!

My manifestation of the disease started with just cold hand in which I still

have today and of course my fingers will turn purple if temp is cold. I also

have some motility issues in my esophagus but minimal. I do not choke on foods

or liquids. I do have difficulty if food is dry.

Anyway to make a very long journey short the just of it is in my past few years

what I am experiencing more so is issues in my lungs.

If I had not gone to the Grand Canyon a couple of years ago and attempted to

hike back I would have never really known that my lungs were being compromised.

I have gone to many many doctors and the most sensible one has been a doctor

(pulmonologist) out of UCLA who has stated to me that I do have lost about 50 %

of lung capacity due to lung fibrosis and he states that other than shortness of

breath which occurs frequently based on what I am doing, he does not recommend

toxic drugs. He basically has me come in every few months and go through the

usual test PFT, 6 minute walk, echo,and CT scan. He stated that if he would have

started me on cellcept, cytoxin and other crap I would probably have gotten

worse than somewhat stable.

Anyway, what I have seems to be a very slow type of scleroderma I have been

researching AP protocol the last few months and went to see a AP doctor who

stated that he wants me to start on 100mg minocin five days a week 2x day and

skip Mon- Thurs. He also want to start me on IV of clindamycin 7 days a week and

off 2 weeks and back on.

I have read many dosing protocols and the IV part of it seems excessive. I have

read a week to begin and then one infusion every few weeks. I do not know much

about the dosing but again I am very conservative and do not want to blast my

body that quickly. If anyone does have lung involvement with SD and are on AP

can you share your thoughts on this and how are you doing with the therapy.

Thank you.

[Guest guest]

Valarmie, I would recommend heavily that you trust this AP physician who wants

to do your clindamycin ivs. I began my journey such a long time ago with heavy

doses of clindamycin iv's and then on to Minocin and other things. obviously,

this doctor understands the mortality rate of scleroderma patients and the

difficult journey, if possible, back to wellness. He is wanting to " jump start "

you and I salute him for that. You are truly LUCkY to have him as so many

doctors do not understand the Minocin concept much less the clindamycin iv's. I

am now coming up on six years of remission or cure - time will tell on that one.

I lost a kidney and had to have some heart surgery in the process but I am one

of the very, very lucky ones.

Good luck!

rheumatic SD (Systemic)

rheumatic

Date: Wednesday, April 14, 2010, 9:06 AM

Hi everyone.

I was diagnosed with CREST about 18 years ago!!!

My manifestation of the disease started with just cold hand in which I still

have today and of course my fingers will turn purple if temp is cold. I also

have some motility issues in my esophagus but minimal. I do not choke on foods

or liquids. I do have difficulty if food is dry.

Anyway to make a very long journey short the just of it is in my past few years

what I am experiencing more so is issues in my lungs.

If I had not gone to the Grand Canyon a couple of years ago and attempted to

hike back I would have never really known that my lungs were being compromised.

I have gone to many many doctors and the most sensible one has been a doctor

(pulmonologist) out of UCLA who has stated to me that I do have lost about 50 %

of lung capacity due to lung fibrosis and he states that other than shortness of

breath which occurs frequently based on what I am doing, he does not recommend

toxic drugs. He basically has me come in every few months and go through the

usual test PFT, 6 minute walk, echo,and CT scan. He stated that if he would have

started me on cellcept, cytoxin and other crap I would probably have gotten

worse than somewhat stable.

Anyway, what I have seems to be a very slow type of scleroderma I have been

researching AP protocol the last few months and went to see a AP doctor who

stated that he wants me to start on 100mg minocin five days a week 2x day and

skip Mon- Thurs. He also want to start me on IV of clindamycin 7 days a week and

off 2 weeks and back on.

I have read many dosing protocols and the IV part of it seems excessive. I have

read a week to begin and then one infusion every few weeks. I do not know much

about the dosing but again I am very conservative and do not want to blast my

body that quickly. If anyone does have lung involvement with SD and are on AP

can you share your thoughts on this and how are you doing with the therapy.

Thank you.

[Guest guest]

Hi,

I have RA and fibro and the thing that started my roadback 12 years ago was

IV clindamycin. I also read that Scleraderma patients need to do the IV's

although there are a few people on this site who are doing OK on Minocin

without IV's. You will wish you didn't wait to start the IV's when you feel

all the benefits. You are VERY lucky to have a doctor that is so

knowledgeable and is willing to do the IV's. Where is this amazing doctor?

He is not just practicing medicine .he actually knows medicine!

Cooky

Subject: rheumatic SD (Systemic)

Hi everyone.

I was diagnosed with CREST about 18 years ago!!!

My manifestation of the disease started with just cold hand in which I still

have today and of course my fingers will turn purple if temp is cold. I also

have some motility issues in my esophagus but minimal. I do not choke on

foods or liquids. I do have difficulty if food is dry.

Anyway to make a very long journey short the just of it is in my past few

years what I am experiencing more so is issues in my lungs.

If I had not gone to the Grand Canyon a couple of years ago and attempted to

hike back I would have never really known that my lungs were being

compromised. I have gone to many many doctors and the most sensible one has

been a doctor (pulmonologist) out of UCLA who has stated to me that I do

have lost about 50 % of lung capacity due to lung fibrosis and he states

that other than shortness of breath which occurs frequently based on what I

am doing, he does not recommend toxic drugs. He basically has me come in

every few months and go through the usual test PFT, 6 minute walk, echo,and

CT scan. He stated that if he would have started me on cellcept, cytoxin and

other crap I would probably have gotten worse than somewhat stable.

Anyway, what I have seems to be a very slow type of scleroderma I have been

researching AP protocol the last few months and went to see a AP doctor who

stated that he wants me to start on 100mg minocin five days a week 2x day

and skip Mon- Thurs. He also want to start me on IV of clindamycin 7 days a

week and off 2 weeks and back on.

I have read many dosing protocols and the IV part of it seems excessive. I

have read a week to begin and then one infusion every few weeks. I do not

know much about the dosing but again I am very conservative and do not want

to blast my body that quickly. If anyone does have lung involvement with SD

and are on AP can you share your thoughts on this and how are you doing with

the therapy.

Thank you.

[Guest guest]

I do not have Scleroderma, but am on AP and lyme protocol.  My AP doctor has me

on IV Clindamycin for seven days; one week on, two weeks off.  Nothing has done

more for my Reactive Arthritis, than IV Clindamycin!

There are many people with Scleroderma who have benefited greatly from the

IV's.  It's my humble opinion, but the more aggressive the treatment, the

better the results.  I have not had any side effects from the IV's.  There is

a guy on another AP site that has completed 140 IV Clindamycin treatments, and

is getting his life back.

I must have the same doctor as you, as this seems to be his most recent

treatment schedule.  You can always scale back, if the treatment is too

aggressive.  You may end up like the rest of us who love our IV's!

From: Cooky Stonkey <cookee1@...>

Subject: RE: rheumatic SD (Systemic)

rheumatic

Date: Wednesday, April 14, 2010, 11:23 AM

 

Hi,

I have RA and fibro and the thing that started my roadback 12 years ago was

IV clindamycin. I also read that Scleraderma patients need to do the IV's

although there are a few people on this site who are doing OK on Minocin

without IV's. You will wish you didn't wait to start the IV's when you feel

all the benefits. You are VERY lucky to have a doctor that is so

knowledgeable and is willing to do the IV's. Where is this amazing doctor?

He is not just practicing medicine .he actually knows medicine!

Cooky

Subject: rheumatic SD (Systemic)

Hi everyone.

I was diagnosed with CREST about 18 years ago!!!

My manifestation of the disease started with just cold hand in which I still

have today and of course my fingers will turn purple if temp is cold. I also

have some motility issues in my esophagus but minimal. I do not choke on

foods or liquids. I do have difficulty if food is dry.

Anyway to make a very long journey short the just of it is in my past few

years what I am experiencing more so is issues in my lungs.

If I had not gone to the Grand Canyon a couple of years ago and attempted to

hike back I would have never really known that my lungs were being

compromised. I have gone to many many doctors and the most sensible one has

been a doctor (pulmonologist) out of UCLA who has stated to me that I do

have lost about 50 % of lung capacity due to lung fibrosis and he states

that other than shortness of breath which occurs frequently based on what I

am doing, he does not recommend toxic drugs. He basically has me come in

every few months and go through the usual test PFT, 6 minute walk, echo,and

CT scan. He stated that if he would have started me on cellcept, cytoxin and

other crap I would probably have gotten worse than somewhat stable.

Anyway, what I have seems to be a very slow type of scleroderma I have been

researching AP protocol the last few months and went to see a AP doctor who

stated that he wants me to start on 100mg minocin five days a week 2x day

and skip Mon- Thurs. He also want to start me on IV of clindamycin 7 days a

week and off 2 weeks and back on.

I have read many dosing protocols and the IV part of it seems excessive. I

have read a week to begin and then one infusion every few weeks. I do not

know much about the dosing but again I am very conservative and do not want

to blast my body that quickly. If anyone does have lung involvement with SD

and are on AP can you share your thoughts on this and how are you doing with

the therapy.

Thank you.

[Guest guest]

I'm with Cooky here....who is this amazing doctor??

From: Cooky Stonkey <cookee1@...>

Subject: RE: rheumatic SD (Systemic)

rheumatic

Date: Wednesday, April 14, 2010, 11:23 AM

 

 

   

     

     

      Hi,

I have RA and fibro and the thing that started my roadback 12 years ago was

IV clindamycin. I also read that Scleraderma patients need to do the IV's

although there are a few people on this site who are doing OK on Minocin

without IV's. You will wish you didn't wait to start the IV's when you feel

all the benefits. You are VERY lucky to have a doctor that is so

knowledgeable and is willing to do the IV's. Where is this amazing doctor?

He is not just practicing medicine .he actually knows medicine!

Cooky

Subject: rheumatic SD (Systemic)

Hi everyone.

I was diagnosed with CREST about 18 years ago!!!

My manifestation of the disease started with just cold hand in which I still

have today and of course my fingers will turn purple if temp is cold. I also

have some motility issues in my esophagus but minimal. I do not choke on

foods or liquids. I do have difficulty if food is dry.

Anyway to make a very long journey short the just of it is in my past few

years what I am experiencing more so is issues in my lungs.

If I had not gone to the Grand Canyon a couple of years ago and attempted to

hike back I would have never really known that my lungs were being

compromised. I have gone to many many doctors and the most sensible one has

been a doctor (pulmonologist) out of UCLA who has stated to me that I do

have lost about 50 % of lung capacity due to lung fibrosis and he states

that other than shortness of breath which occurs frequently based on what I

am doing, he does not recommend toxic drugs. He basically has me come in

every few months and go through the usual test PFT, 6 minute walk, echo,and

CT scan. He stated that if he would have started me on cellcept, cytoxin and

other crap I would probably have gotten worse than somewhat stable.

Anyway, what I have seems to be a very slow type of scleroderma I have been

researching AP protocol the last few months and went to see a AP doctor who

stated that he wants me to start on 100mg minocin five days a week 2x day

and skip Mon- Thurs. He also want to start me on IV of clindamycin 7 days a

week and off 2 weeks and back on.

I have read many dosing protocols and the IV part of it seems excessive. I

have read a week to begin and then one infusion every few weeks. I do not

know much about the dosing but again I am very conservative and do not want

to blast my body that quickly. If anyone does have lung involvement with SD

and are on AP can you share your thoughts on this and how are you doing with

the therapy.

Thank you.

[Guest guest]

>

> From: Cooky Stonkey <cookee1@...>

> Subject: RE: rheumatic SD (Systemic)

> rheumatic

> Date: Wednesday, April 14, 2010, 11:23 AM

>

>

>

>

>

>

>

>  

>

>

>

>

>

>

>

>

>

> Hi,

>

>

>

> I have RA and fibro and the thing that started my roadback 12 years ago was

>

> IV clindamycin. I also read that Scleraderma patients need to do the IV's

>

> although there are a few people on this site who are doing OK on Minocin

>

> without IV's. You will wish you didn't wait to start the IV's when you feel

>

> all the benefits. You are VERY lucky to have a doctor that is so

>

> knowledgeable and is willing to do the IV's. Where is this amazing doctor?

>

> He is not just practicing medicine .he actually knows medicine!

>

>

>

> Cooky

>

>

>

> Subject: rheumatic SD (Systemic)

>

>

>

> Hi everyone.

>

> I was diagnosed with CREST about 18 years ago!!!

>

> My manifestation of the disease started with just cold hand in which I still

>

> have today and of course my fingers will turn purple if temp is cold. I also

>

> have some motility issues in my esophagus but minimal. I do not choke on

>

> foods or liquids. I do have difficulty if food is dry.

>

> Anyway to make a very long journey short the just of it is in my past few

>

> years what I am experiencing more so is issues in my lungs.

>

> If I had not gone to the Grand Canyon a couple of years ago and attempted to

>

> hike back I would have never really known that my lungs were being

>

> compromised. I have gone to many many doctors and the most sensible one has

>

> been a doctor (pulmonologist) out of UCLA who has stated to me that I do

>

> have lost about 50 % of lung capacity due to lung fibrosis and he states

>

> that other than shortness of breath which occurs frequently based on what I

>

> am doing, he does not recommend toxic drugs. He basically has me come in

>

> every few months and go through the usual test PFT, 6 minute walk, echo,and

>

> CT scan. He stated that if he would have started me on cellcept, cytoxin and

>

> other crap I would probably have gotten worse than somewhat stable.

>

> Anyway, what I have seems to be a very slow type of scleroderma I have been

>

> researching AP protocol the last few months and went to see a AP doctor who

>

> stated that he wants me to start on 100mg minocin five days a week 2x day

>

> and skip Mon- Thurs. He also want to start me on IV of clindamycin 7 days a

>

> week and off 2 weeks and back on.

>

> I have read many dosing protocols and the IV part of it seems excessive. I

>

> have read a week to begin and then one infusion every few weeks. I do not

>

> know much about the dosing but again I am very conservative and do not want

>

> to blast my body that quickly. If anyone does have lung involvement with SD

>

> and are on AP can you share your thoughts on this and how are you doing with

>

> the therapy.

>

> Thank you.

>

>

>

>

[Guest guest]

>

> Hi everyone.

> I was diagnosed with CREST about 18 years ago!!!

> My manifestation of the disease started with just cold hand in which I still

have today and of course my fingers will turn purple if temp is cold. I also

have some motility issues in my esophagus but minimal. I do not choke on foods

or liquids. I do have difficulty if food is dry.

> Anyway to make a very long journey short the just of it is in my past few

years what I am experiencing more so is issues in my lungs.

> If I had not gone to the Grand Canyon a couple of years ago and attempted to

hike back I would have never really known that my lungs were being compromised.

I have gone to many many doctors and the most sensible one has been a doctor

(pulmonologist) out of UCLA who has stated to me that I do have lost about 50 %

of lung capacity due to lung fibrosis and he states that other than shortness of

breath which occurs frequently based on what I am doing, he does not recommend

toxic drugs. He basically has me come in every few months and go through the

usual test PFT, 6 minute walk, echo,and CT scan. He stated that if he would have

started me on cellcept, cytoxin and other crap I would probably have gotten

worse than somewhat stable.

> Anyway, what I have seems to be a very slow type of scleroderma I have been

researching AP protocol the last few months and went to see a AP doctor who

stated that he wants me to start on 100mg minocin five days a week 2x day and

skip Mon- Thurs. He also want to start me on IV of clindamycin 7 days a week and

off 2 weeks and back on.

> I have read many dosing protocols and the IV part of it seems excessive. I

have read a week to begin and then one infusion every few weeks. I do not know

much about the dosing but again I am very conservative and do not want to blast

my body that quickly. If anyone does have lung involvement with SD and are on AP

can you share your thoughts on this and how are you doing with the therapy.

> Thank you.

>

Hi everyone. It is Dr. Franco in Riverside. I have been there twice first seen

by his assistant and few days ago by Dr.F. Do not know much about him other than

what I have briefly seen in blogs.

I am wondering if it is wise to start slow and build up until your body gets

used to the introduction of AP.

Thanks