Polymyositis

[Guest guest]

Hello ,

Thank you.

I am looking at my husband's Rx and it says Bactrim DS Tablet 3 x's a week. I

believe the DS is for double strength. It does not give a mg type dosage. He has

been taking bactrim since fall of '08. Prior to that, when he was in the

hospital he was on IV antibiotics. Before that, from '03 on he was not taking

antibiotics. He was on heavy doses of prednisone and methotrexate, plus some

other drugs.

Currently he takes Juice Plus. I don't know if they really help, but it is peace

of mind for me and it doesn't cause him any discomfort. I also make him berry

smoothies and he takes probiotics. He takes a lot of calcium. We are going to

start trying to incorporate fish oil for extra omegas. Everything is trial and

error. He has tried goji berry juice because we had heard of the wonderful

benefits, but it was too strong and he would get acid reflux. Since he was

first diagnosed he has suffered with terrible acid reflux and that is why he

does not consume chemical vitamins anymore, they would constantly cause reflux

issues. He takes honey to help his cough.

Stay well.

br

rheumatic polymyositis

rheumatic

Date: Thursday, March 11, 2010, 9:23 PM

  

I have been diagnosed with polymyositis. I have been on Minocin for four months

(100mg m-w-f) I think I'm a little stronger. My CPK was 7,000. I had blood drawn

today and hope the CPK has gone down.

My bigger concern is my lungs. The Poly has caused me to have fibrotic changes

and some scarring. The doctors say they don't know why Poly causes lung

complications. I was wondering if any of you have lung scarring and if Minocin

has improved your lungs. Or are you stuck with bad lungs forever? Thanks for any

info I may receive.

[Guest guest]

Thank you and congratulations to you as well. We are always so happy to read the

posts about an improvement in someone's health. It has been a long and scary

road and although we rarely post anything, we try to read everything.

Silently, we have clung to the dream of a complete remission and reading these

posts gives us hope and strength.

The most recent pneumonia my husband had in '08 was not bacterial, it was

fungal. I believe it was cryptococcus, yeast multiplied in his lungs.

He was not on 1 mg of prednisone, he was on 1 gram. His rheumatologist has

slowly decreased his prednisone, and recently he has gone down to 3 mg a

day. My husband's goal, as well as the rheumatologist's desire, is

to eventually eliminate prednisone completely. Understandably, they

are quite cautious. At each interval of the prednisone decreasing, my husbands

joints suffer for a period of time.

How are you able to identify a relationship between Mycoplasma Pneumonae and

Scleroderma? I am curious because no one seems to be able to truly identify

the origin of Polymyositis. We have spoken to many doctors and done

research, there seem to be some common denominators but no definitive answers.

Regards,

br

Congratulations on your husband's comeback!  There is just one small part of

your post that bothers me a lot.  In order to keep on fighting off the

bacteria. that settles in the lungs to cause pneumonia, you need an intact

strong immune system.  The antibiotics saved your husband's life because they

attacked the bacteria and your immune system killed them off. He got better

because the bacteria load was reduced.  You say your husband was on 1 mg

prednisone, now 3 mg.  This is not a large dose, however, it would behoove him

to get off the prednisone as soon as it is safe to do so.  Why has his dose

been increased?  Prednisone is an immune suppressant.  The goal is to boost

the immune system to work, not suppress it.  You cannot suppress and boost at

the same time.  I think your doctor is wrong.  Find an A/P doc who can help

your husband get off prednisone safely. And again, congratulations of his

recovery.  I am also recovering from

Pulmonary Fibrosis due to Scleroderma which is due to Micoplasma

Pneumonae..... Dolores & mike

From: marthabedford < jemkbedford@ comcast.net >

Subject: rheumatic polymyositis

rheumatic@grou ps.com

Date: Thursday, March 11, 2010, 9:23 PM

 

I have been diagnosed with polymyositis. I have been on Minocin for four months

(100mg m-w-f) I think I'm a little stronger. My CPK was 7,000. I had blood drawn

today and hope the CPK has gone down.

My bigger concern is my lungs. The Poly has caused me to have fibrotic changes

and some scarring. The doctors say they don't know why Poly causes lung

complications. I was wondering if any of you have lung scarring and if Minocin

has improved your lungs. Or are you stuck with bad lungs forever? Thanks for any

info I may receive.

[Guest guest]

Hello again ,

What is ALA and where do we get it? Can you direct me to the article?

I worry about his sugar intake too. I believe there is a higher incidence of

diabetes for people on steroids, but so far it has been the only thing that

helps him. Fluconazole is an anti-fungal, too many side effects.  I have some

essential oils, oregano happens to be one that I use topically when any of us

start to get a cold. It is very strong, what is your suggestion on how he

should use it?

His cough has been checked many times by every kind of doctor and they say there

is no infection. Here are some of the theories; he has congestive heart failure

as a result of the polymyositis and his lungs fill with fluid at down times

which makes him cough, a weak esophagus,  and/or interstitial lung disease. We

think it is a combination of everything.

We appreciate the information.

Thank you very much for your time.

br

rheumatic polymyositis

rheumatic

Date: Thursday, March 11, 2010, 9:23 PM

  

I have been diagnosed with polymyositis. I have been on Minocin for four months

(100mg m-w-f) I think I'm a little stronger. My CPK was 7,000. I had blood drawn

today and hope the CPK has gone down.

My bigger concern is my lungs. The Poly has caused me to have fibrotic changes

and some scarring. The doctors say they don't know why Poly causes lung

complications. I was wondering if any of you have lung scarring and if Minocin

has improved your lungs. Or are you stuck with bad lungs forever? Thanks for any

info I may receive.

[Guest guest]

ALA is alpha lipoic acid and you can get it in the health food store. get the

300mg and take one time a day with a meal.

Eva

From: marthabedford < jemkbedford@ comcast.net >

Subject: rheumatic polymyositis

rheumatic@grou ps.com

Date: Thursday, March 11, 2010, 9:23 PM

  

I have been diagnosed with polymyositis. I have been on Minocin for four months

(100mg m-w-f) I think I'm a little stronger. My CPK was 7,000. I had blood drawn

today and hope the CPK has gone down.

My bigger concern is my lungs. The Poly has caused me to have fibrotic changes

and some scarring. The doctors say they don't know why Poly causes lung

complications. I was wondering if any of you have lung scarring and if Minocin

has improved your lungs. Or are you stuck with bad lungs forever? Thanks for any

info I may receive.

[Guest guest]

Hello Br,

ALA is apha lipoic acid. the therapeutic dose is 1200 mg taken 600mg in the

morning and 600mg in early afternoon.

some docs talk about benzene contamination in nutraceutical grade and they

recommend pharma grade made by xymogen.

I tried both kinds, then settled for the pharma grade.

the oregano oil extra strength - will get to it tomorrow, will tell you the

source. I am in the bedroom now, hard to get to it

I will give you tips on cough tomorrow

good night,

EMAILING FOR THE GREATER GOOD

Join me

rheumatic

From: REDDEROTH4@...

Date: Sat, 13 Mar 2010 03:48:11 +0000

Subject: Re: rheumatic polymyositis

Hello again ,

What is ALA and where do we get it? Can you direct me to the article?

I worry about his sugar intake too. I believe there is a higher incidence of

diabetes for people on steroids, but so far it has been the only thing that

helps him. Fluconazole is an anti-fungal, too many side effects. I have some

essential oils, oregano happens to be one that I use topically when any of us

start to get a cold. It is very strong, what is your suggestion on how he should

use it?

His cough has been checked many times by every kind of doctor and they say there

is no infection. Here are some of the theories; he has congestive heart failure

as a result of the polymyositis and his lungs fill with fluid at down times

which makes him cough, a weak esophagus, and/or interstitial lung disease. We

think it is a combination of everything.

We appreciate the information.

Thank you very much for your time.

br

rheumatic polymyositis

rheumatic

Date: Thursday, March 11, 2010, 9:23 PM

I have been diagnosed with polymyositis. I have been on Minocin for four months

(100mg m-w-f) I think I'm a little stronger. My CPK was 7,000. I had blood drawn

today and hope the CPK has gone down.

My bigger concern is my lungs. The Poly has caused me to have fibrotic changes

and some scarring. The doctors say they don't know why Poly causes lung

complications. I was wondering if any of you have lung scarring and if Minocin

has improved your lungs. Or are you stuck with bad lungs forever? Thanks for any

info I may receive.

[Guest guest]

Martha,

My wife, had heart lung involvement with her Dermatomyositis. She still

takes Minocin which I believe saved her life. No more problems with heart or

lungs. Once she started LDN (Low Dose Naltrexone) her rate of improvement

increased. I would strongly recommend LDN to you. Medical sites such as

www.diagnoseme.com recommend LDN for PM and DM. LDN like Minocin have lowered

inflammation and blood tests continue to show that.

-Jim

>

>

> From: marthabedford <jemkbedford@...>

> Subject: rheumatic polymyositis

> rheumatic

> Date: Thursday, March 11, 2010, 9:23 PM

>

>

>  

>

>

>

> I have been diagnosed with polymyositis. I have been on Minocin for four

months (100mg m-w-f) I think I'm a little stronger. My CPK was 7,000. I had

blood drawn today and hope the CPK has gone down.

>

> My bigger concern is my lungs. The Poly has caused me to have fibrotic changes

and some scarring. The doctors say they don't know why Poly causes lung

complications. I was wondering if any of you have lung scarring and if Minocin

has improved your lungs. Or are you stuck with bad lungs forever? Thanks for any

info I may receive.

>

>

>

>

>

>

>

>

>

[Guest guest]

EMAILING FOR THE GREATER GOOD

Join me

rheumatic

From: REDDEROTH4@...

Date: Fri, 12 Mar 2010 19:12:02 +0000

Subject: Re: rheumatic polymyositis

My husband has had polymyositis since '03, he was 40 when he was diagnosed. He

has been very ill twice and he has had pneumonia a few times. The last time he

was very ill was in '08, he was told that he had interstitial lung disease and

COPD from taking Methotrexate. He does have those but the big problem turned out

to be a type of yeast pneumonia that took months to diagnose. He almost died, he

couldn't breathe on his own anymore. The pulmonologist told him people with

weakened immune systems develop this pneumonia sometimes and he is on bactrim

for the rest of his life. Thank goodness, because we couldn't find a dr that

would give him the antibiotic protocol. His disease finally turned around when

he started high doses of antibiotics and it hasn't come back since. When he came

home from the hospital he was on oxygen and in a wheel chair. They told us he

would never drive again and he couldn't go up and down stairs. Guess what? He is

back at work full time, he works out and life is pretty normal again. No oxygen,

no wheelchair! He coughs a lot in the morning and at night, but that is it. He

was on 1 gram of Prednisone a day, now 3 mg. The rheumy won't take him off the

prednisone. He also takes a lot of healthy supplements, no chemical vitamins

though. Oh, and his lung capacity is 69 pct now, a huge improvement. I hope

this gives you some hope and some encouragement to find a dr that will start you

on antibiotics.

Good luck.

The Redderoths

rheumatic polymyositis

rheumatic

Date: Thursday, March 11, 2010, 9:23 PM

I have been diagnosed with polymyositis. I have been on Minocin for four months

(100mg m-w-f) I think I'm a little stronger. My CPK was 7,000. I had blood drawn

today and hope the CPK has gone down.

My bigger concern is my lungs. The Poly has caused me to have fibrotic changes

and some scarring. The doctors say they don't know why Poly causes lung

complications. I was wondering if any of you have lung scarring and if Minocin

has improved your lungs. Or are you stuck with bad lungs forever? Thanks for any

info I may receive.

[Guest guest]

Hello again,

cough at night is usually an infection

if it's productive, you can get your doc to culture the sputum

and get a prescription that forces the mucus out

if it's dry, can be caused by mycoplasma and you need to suppress the cough and

treat the mycoplasma

a good, natural antifungal is oregano oil. I get OREGANOL P75, 5 drops a day

while on antibiotics and 2 drops a day maintenance.

if fungal infection is suspected, follow a no sugar, starch diet

take care of the liver: NAC, milk thistle, ALA

good luck,

EMAILING FOR THE GREATER GOOD

Join me

rheumatic

From: REDDEROTH4@...

Date: Fri, 12 Mar 2010 19:12:02 +0000

Subject: Re: rheumatic polymyositis

My husband has had polymyositis since '03, he was 40 when he was diagnosed. He

has been very ill twice and he has had pneumonia a few times. The last time he

was very ill was in '08, he was told that he had interstitial lung disease and

COPD from taking Methotrexate. He does have those but the big problem turned out

to be a type of yeast pneumonia that took months to diagnose. He almost died, he

couldn't breathe on his own anymore. The pulmonologist told him people with

weakened immune systems develop this pneumonia sometimes and he is on bactrim

for the rest of his life. Thank goodness, because we couldn't find a dr that

would give him the antibiotic protocol. His disease finally turned around when

he started high doses of antibiotics and it hasn't come back since. When he came

home from the hospital he was on oxygen and in a wheel chair. They told us he

would never drive again and he couldn't go up and down stairs. Guess what? He is

back at work full time, he works out and life is pretty normal again. No oxygen,

no wheelchair! He coughs a lot in the morning and at night, but that is it. He

was on 1 gram of Prednisone a day, now 3 mg. The rheumy won't take him off the

prednisone. He also takes a lot of healthy supplements, no chemical vitamins

though. Oh, and his lung capacity is 69 pct now, a huge improvement. I hope

this gives you some hope and some encouragement to find a dr that will start you

on antibiotics.

Good luck.

The Redderoths

rheumatic polymyositis

rheumatic

Date: Thursday, March 11, 2010, 9:23 PM

I have been diagnosed with polymyositis. I have been on Minocin for four months

(100mg m-w-f) I think I'm a little stronger. My CPK was 7,000. I had blood drawn

today and hope the CPK has gone down.

My bigger concern is my lungs. The Poly has caused me to have fibrotic changes

and some scarring. The doctors say they don't know why Poly causes lung

complications. I was wondering if any of you have lung scarring and if Minocin

has improved your lungs. Or are you stuck with bad lungs forever? Thanks for any

info I may receive.

[Guest guest]

Thank you very much. I will check into ALA today.

br

rheumatic polymyositis

rheumatic@grou ps.com

Date: Thursday, March 11, 2010, 9:23 PM

  

I have been diagnosed with polymyositis. I have been on Minocin for four months

(100mg m-w-f) I think I'm a little stronger. My CPK was 7,000. I had blood drawn

today and hope the CPK has gone down.

My bigger concern is my lungs. The Poly has caused me to have fibrotic changes

and some scarring. The doctors say they don't know why Poly causes lung

complications. I was wondering if any of you have lung scarring and if Minocin

has improved your lungs. Or are you stuck with bad lungs forever? Thanks for any

info I may receive.

[Guest guest]

Hi ,

Thank you so much for all of the good information and your continued patience. I

have just a few more questions.

I think you are right, he needs to have his cough tested again. I will suggest

the culture and check for mycoplasma.

My husband takes bactrim 3x a week, so I just want to be clear that he should be

taking 5 drops a day of oregano oil on those days and 2 drops a day on the days

he doesn't take bactrim. Also, how do you take the oregano oil?

Ok, I just checked a couple of sites on NAC, and for anyone else who wants a

quick and thorough explanation on the NAC here is a good resource;

http://www.liversupport.com/wordpress/2008/05/n-acetyl-cysteine-is-a-liver%E2%80\

%99s-ally/ . He definitely needs to get started on this right away.

I truly appreciate your help!

br

rheumatic polymyositis

rheumatic

Date: Thursday, March 11, 2010, 9:23 PM

  

I have been diagnosed with polymyositis. I have been on Minocin for four months

(100mg m-w-f) I think I'm a little stronger. My CPK was 7,000. I had blood drawn

today and hope the CPK has gone down.

My bigger concern is my lungs. The Poly has caused me to have fibrotic changes

and some scarring. The doctors say they don't know why Poly causes lung

complications. I was wondering if any of you have lung scarring and if Minocin

has improved your lungs. Or are you stuck with bad lungs forever? Thanks for any

info I may receive.

[Guest guest]

Hi Dolores,

You have been through so much, I am very sorry. It is good to hear that

you are doing so well now. Thank you for sharing your story.

I don't know if I mentioned that my husband's doctors are completely opposed to

the AP and my husband is afraid not to listen to them. I can get him to take any

supplement as long as they approve it, it is definitely an uphill battle. I

think that if I can get him to see a rheumatologist, an m.d. that supports this

protocol he would get off the prednisone. Here is the condensed version of why

he is afraid; when he first became ill, at my urging he tried many alternative

doctors, chiropractors, herbal therapy, and an insane doctor that tested him

with some kind of electric wand and told him he would be dead in two years and

that since I would be left to care for the kids to have all of my silver

fillings removed. That was it, a skeptic was born. So, I am going to find out

everything I can about Dr. Trentham and try and get an appointment for my

husband.

I will pray for your continued health.

br

rheumatic polymyositis

rheumatic@grou ps.com

Date: Thursday, March 11, 2010, 9:23 PM

 

I have been diagnosed with polymyositis. I have been on Minocin for four months

(100mg m-w-f) I think I'm a little stronger. My CPK was 7,000. I had blood drawn

today and hope the CPK has gone down.

My bigger concern is my lungs. The Poly has caused me to have fibrotic changes

and some scarring. The doctors say they don't know why Poly causes lung

complications. I was wondering if any of you have lung scarring and if Minocin

has improved your lungs. Or are you stuck with bad lungs forever? Thanks for any

info I may receive.

[Guest guest]

Hello Br,

here you have an article focused on HIV that explains well the MITOCHONDRIAL

DAMAGE occurring with hiv drugs and antibiotics and what you can do to help

repair it.

________________________________

From: " REDDEROTH4@... " <REDDEROTH4@...>

rheumatic

Sent: Fri, March 12, 2010 8:05:47 PM

Subject: Re: rheumatic polymyositis

 

Thank you and congratulations to you as well. We are always so happy to read the

posts about an improvement in someone's health. It has been a long and scary

road and although we rarely post anything, we try to read everything.

Silently, we have clung to the dream of a complete remission and reading these

posts gives us hope and strength.

The most recent pneumonia my husband had in '08 was not bacterial, it was

fungal. I believe it was cryptococcus, yeast multiplied in his lungs.

He was not on 1 mg of prednisone, he was on 1 gram. His rheumatologist has

slowly decreased his prednisone, and recently he has gone down to 3 mg a

day. My husband's goal, as well as the rheumatologist' s desire, is

to eventually eliminate prednisone completely. Understa ndably, they

are quite cautious. At each interval of the prednisone decreasing, my husbands

joints suffer for a period of time.

How are you able to identify a relationship between Mycoplasma Pneumonae and

Scleroderma? I am curious because  no one seems to be able to truly identify

the origin of Polymyositis. We have spoken to many doctors and done

research, there seem to be some common denominators but no definitive answers.

Regards,

br

Congratulations on your husband's comeback!  There is just one small part of

your post that bothers me a lot.  In order to keep on fighting off the

bacteria. that settles in the lungs to cause pneumonia, you need an intact

strong immune system.  The antibiotics saved your husband's life because they

attacked the bacteria and your immune system killed them off. He got better

because the bacteria load was reduced.  You say your husband was on 1 mg

prednisone, now 3 mg.  This is not a large dose, however, it would behoove him

to get off the prednisone as soon as it is safe to do so.  Why has his dose

been increased?  Prednisone is an immune suppressant.  The goal is to boost

the immune system to work, not suppress it.  You cannot suppress and boost at

the same time.  I think your doctor is wrong.  Find an A/P doc who can help

your husband get off prednisone safely. And again, congratulations of his

recovery.  I am also recovering from

Pulmonary Fibrosis due to Scleroderma which is due to Micoplasma Pneumonae...

... Dolores & mike

From: marthabedford < jemkbedford@ comcast.net >

Subject: rheumatic polymyositis

rheumatic@grou ps.com

Date: Thursday, March 11, 2010, 9:23 PM

 

I have been diagnosed with polymyositis. I have been on Minocin for four months

(100mg m-w-f) I think I'm a little stronger. My CPK was 7,000. I had blood drawn

today and hope the CPK has gone down.

My bigger concern is my lungs. The Poly has caused me to have fibrotic changes

and some scarring. The doctors say they don't know why Poly causes lung

complications. I was wondering if any of you have lung scarring and if Minocin

has improved your lungs. Or are you stuck with bad lungs forever? Thanks for any

info I may receive.

[Guest guest]

sorry, here is the article:

http://www.thebody.com/content/art1976.html

________________________________

From: Ana Andrescu <anaandrescu@...>

rheumatic

Sent: Sun, March 14, 2010 11:56:43 AM

Subject: Re: rheumatic polymyositis

Hello Br,

here you have an article focused on HIV that explains well the MITOCHONDRIAL

DAMAGE occurring with hiv drugs and antibiotics and what you can do to help

repair it.

________________________________

From: " REDDEROTH4@... " <REDDEROTH4@...>

rheumatic

Sent: Fri, March 12, 2010 8:05:47 PM

Subject: Re: rheumatic polymyositis

 

Thank you and congratulations to you as well. We are always so happy to read the

posts about an improvement in someone's health. It has been a long and scary

road and although we rarely post anything, we try to read everything.

Silently, we have clung to the dream of a complete remission and reading these

posts gives us hope and strength.

The most recent pneumonia my husband had in '08 was not bacterial, it was

fungal. I believe it was cryptococcus, yeast multiplied in his lungs.

He was not on 1 mg of prednisone, he was on 1 gram. His rheumatologist has

slowly decreased his prednisone, and recently he has gone down to 3 mg a

day. My husband's goal, as well as the rheumatologist' s desire, is

to eventually eliminate prednisone completely. Understa ndably, they

are quite cautious. At each interval of the prednisone decreasing, my husbands

joints suffer for a period of time.

How are you able to identify a relationship between Mycoplasma Pneumonae and

Scleroderma? I am curious because  no one seems to be able to truly identify

the origin of Polymyositis. We have spoken to many doctors and done

research, there seem to be some common denominators but no definitive answers.

Regards,

br

Congratulations on your husband's comeback!  There is just one small part of

your post that bothers me a lot.  In order to keep on fighting off the

bacteria. that settles in the lungs to cause pneumonia, you need an intact

strong immune system.  The antibiotics saved your husband's life because they

attacked the bacteria and your immune system killed them off. He got better

because the bacteria load was reduced.  You say your husband was on 1 mg

prednisone, now 3 mg.  This is not a large dose, however, it would behoove him

to get off the prednisone as soon as it is safe to do so.  Why has his dose

been increased?  Prednisone is an immune suppressant.  The goal is to boost

the immune system to work, not suppress it.  You cannot suppress and boost at

the same time.  I think your doctor is wrong.  Find an A/P doc who can help

your husband get off prednisone safely. And again, congratulations of his

recovery.  I am also recovering from

Pulmonary Fibrosis due to Scleroderma which is due to Micoplasma Pneumonae...

... Dolores & mike

From: marthabedford < jemkbedford@ comcast.net >

Subject: rheumatic polymyositis

rheumatic@grou ps.com

Date: Thursday, March 11, 2010, 9:23 PM

 

I have been diagnosed with polymyositis. I have been on Minocin for four months

(100mg m-w-f) I think I'm a little stronger. My CPK was 7,000. I had blood drawn

today and hope the CPK has gone down.

My bigger concern is my lungs. The Poly has caused me to have fibrotic changes

and some scarring. The doctors say they don't know why Poly causes lung

complications. I was wondering if any of you have lung scarring and if Minocin

has improved your lungs. Or are you stuck with bad lungs forever? Thanks for any

info I may receive.

[Guest guest]

Hi, Br. 

 

Also get your husband to read the books by Scammell  & Dr. MacPherson

Brown.  You read them too!  Not a week goes by that I don't re-read another

chapter. Those books explain the antibiotic protocol so much better. They

explain the reasoning behind the antibiotic and how it helps to restore

health.  .When hubby begins to question and being an intelligent man, he will

and should,  Hand him the FAQ sheet or read the answers to him. Sometimes the

pain clouds our thinking.  Know that depression is a big part of having these

diseases. He may not recognise he is in depression, but others will.  These

diseases wear a person down.  He will get crabby at times.  I did.  I

thank god my husband was so supportive... He went with me to the support groups

in the area and we attended the gala that the Scleroderma foundation held.  We

spoke with the people and heard the stories from the other patients and he saw

the horror of what most of them

were going through.  I don't recommend you follow the Scleroderma Foundation

as they don't acknowledge the Antibiotic Protocol. & it shows in the

people. They are too imbedded with Big Pharm who promote the toxic drugs. 

 Most of the people were maimed & crippled.  Some had amputated hands and

were in wheelchairs.  When my husband saw that, he knew we were on the right

track.  My mission became to let every person I met know about the antibiotic

protocol.  Most of the people there swore by their doctors, like. your

husband   When I would get up to speak, they did not believe that I had any

disease whatsoever.  I looked like the only healthy one there.  I owe it all

to the antibiotic protocol.  I am in remission.  I look and feel normal. There

are many like me who followed the course and are in remission also.  I don't

know where in the country you live, but there are some outstanding doctors who

will see you through the protocol.  You

know about Dr. T.in Boston. Then there is Dr. Whitman in N.J., There is Dr.

Franco in Riverside,California, and Dr.Sinnott, in Ida Grove, Iowa.

You can find others by logging on to the Roadback.com and ask for Richie.  He

has a whole list of Docs.  I'm sure he can find one in your area that does the

antibiotic protocol according to the way the protocol is suppose to be done. 

Of late, I have been reading the posts of people who say they are on Enbrel,

Plaquenil, Prednisone and all sorts of other medications.  These are all

toxic.  They are immunosuppressants.  The last thing you want is to suppress

the immune system that was designed to protect you in the first place.The

bacteria has already attacked the immune system into functioning poorly.  That

is why your husband is sick.  What you want to do is attack the bacteria and

get that immune system up and running normally again.  It is such a simple

concept.  I noticed that everyone who is taking all these other drugs is

because they stopped taking the Minocin.  I will not give up my Minocin.  I

still take it MWF and probably will

forever.  Those bacteria that got me sick are still out there and re-infection

is still a possibility. Since I am prone to infection, and I am or I wouldn't

have gotten sick in the first place, I will never let them get a stronghold on

me again.  Ever ! ! !~~~~~~~  Every person, I know that followed the

antibiotic protocol is doing well.  Those who did not are still having

problems and seeking temporary help from toxic drugs that are killing

them. Some of these people are no longer with us. They have passed on.  God

Speed to you & your husband-----Be Strong!  Don't ever hesitate to e:mail me..I

am a strong believer in A/P.~~It saved my life!~~~~~ P.S. I no longer need to

take supplements either.  I believe in real food and pure water, fresh air and

am moving to a beachhouse in two weeks, where I plan to plant an organic garden

in a small greenhouse we are going to put up. I'm looking forward to taking

strolls along the beach each evening

with my husband watching the glorious sunsets.  I now live in the Caribbean..

Healthy living all the way.~~~~My best to you.  You have a difficult road

ahead.  Stay in touch.  Dolores.

From: marthabedford < jemkbedford@ comcast.net >

Subject: rheumatic polymyositis

rheumatic@grou ps.com

Date: Thursday, March 11, 2010, 9:23 PM

 

I have been diagnosed with polymyositis. I have been on Minocin for four months

(100mg m-w-f) I think I'm a little stronger. My CPK was 7,000. I had blood drawn

today and hope the CPK has gone down.

My bigger concern is my lungs. The Poly has caused me to have fibrotic changes

and some scarring. The doctors say they don't know why Poly causes lung

complications. I was wondering if any of you have lung scarring and if Minocin

has improved your lungs. Or are you stuck with bad lungs forever? Thanks for any

info I may receive.

[Guest guest]

Hello Br,

you are correct, I put 2, 1 and 2 drops in a gelatin cap or I take all 5 drops

one time, the day I take antibiotics or 2 drops in a cap the other days. I take

breaks from it every other month using olive leaf extract from thorne research

instead.

take care,

EMAILING FOR THE GREATER GOOD

Join me

rheumatic

From: REDDEROTH4@...

Date: Sun, 14 Mar 2010 15:09:27 +0000

Subject: Re: rheumatic polymyositis

Hi ,

Thank you so much for all of the good information and your continued patience. I

have just a few more questions.

I think you are right, he needs to have his cough tested again. I will suggest

the culture and check for mycoplasma.

My husband takes bactrim 3x a week, so I just want to be clear that he should be

taking 5 drops a day of oregano oil on those days and 2 drops a day on the days

he doesn't take bactrim. Also, how do you take the oregano oil?

Ok, I just checked a couple of sites on NAC, and for anyone else who wants a

quick and thorough explanation on the NAC here is a good resource;

http://www.liversupport.com/wordpress/2008/05/n-acetyl-cysteine-is-a-liver%E2%80\

%99s-ally/ . He definitely needs to get started on this right away.

I truly appreciate your help!

br

rheumatic polymyositis

rheumatic

Date: Thursday, March 11, 2010, 9:23 PM

I have been diagnosed with polymyositis. I have been on Minocin for four months

(100mg m-w-f) I think I'm a little stronger. My CPK was 7,000. I had blood drawn

today and hope the CPK has gone down.

My bigger concern is my lungs. The Poly has caused me to have fibrotic changes

and some scarring. The doctors say they don't know why Poly causes lung

complications. I was wondering if any of you have lung scarring and if Minocin

has improved your lungs. Or are you stuck with bad lungs forever? Thanks for any

info I may receive.

[Guest guest]

Excellent article.

Thank you Ana.

br

rheumatic polymyositis

rheumatic@grou ps.com

Date: Thursday, March 11, 2010, 9:23 PM

 

I have been diagnosed with polymyositis. I have been on Minocin for four months

(100mg m-w-f) I think I'm a little stronger. My CPK was 7,000. I had blood drawn

today and hope the CPK has gone down.

My bigger concern is my lungs. The Poly has caused me to have fibrotic changes

and some scarring. The doctors say they don't know why Poly causes lung

complications. I was wondering if any of you have lung scarring and if Minocin

has improved your lungs. Or are you stuck with bad lungs forever? Thanks for any

info I may receive.

[Guest guest]

Hi ,

I'm sorry about your son's hands. Just to throw this out there- I strongly

recommend the book Green Smoothie Revolution by Boutenko. Her

entire family had health problems, including RA, and all of them were cured

by maintaining a raw foods diet. You end up getting about twenty servings of

fruits and vegetables per day- far more than on any other diet, even with

supplements! Since a raw foods diet is hard to maintain, she stumbled onto

the fact that blending fruits with green leafy veggies makes them much more

palatable. Anyway, I had severe polymyositis- CK of 16,800, unable to walk

etc. The Minocin got me a LONG way!! However, I reached a long plateau where

the remaining things weren't getting better. My body let me know with

constant side effects and intolerances that more drugs wasn't what it was

looking for. I've been drinking delicious green smoothies now for a couple

months, and eating dates or fruit when I wanted something really sweet. I

have NO symptoms at all, look and feel like I did when I was a perfectly

healthy child, have all of my vitality restored, and not a single ache or

pain anywhere! The diet may sound extreme, but it really isn't once you

start, and it is SOOOO worth it. I don't ever want to go back again!

On Fri, Mar 12, 2010 at 6:50 PM, Mazik <smazik@...> wrote:

>

>

> Thank you so much Dolores

>

> From: rheumatic <rheumatic%40> [mailto:

> rheumatic <rheumatic%40>] On Behalf Of mike

> rosner

> Sent: Friday, March 12, 2010 5:49 PM

> rheumatic <rheumatic%40>

> Subject: RE: rheumatic polymyositis

>

> You are bringing tears to my eyes. So sorry for the joints, but the Enbrel

> will only send him backwards. I don't know what to say as I never had that

> problem. He is just a baby to have so much to bear. The hands are so

> important. Is there a pediatric surgeon who can suggest some reconstructive

> surgery that can save his function. I realize he is still growing and that

> makes it so difficult. I hope someone can come up with something you can do.

> I don't have an answer. I am glad you got the books. They saved me and seem

> to be helping your son somewhat. I will start prayers for you and your son.

> I don't know what else to do. You have touched my heart. I wish you find the

> miracle that will work. The best to you, Dolores

>

>

>

> From: marthabedford <jemkbedford@ comcast.net <mailto:jemkbedford%40comcast.

net> >

> Subject: rheumatic polymyositis

> rheumatic@grou ps.com <mailto:rheumatic% <rheumatic%25>40groups.

com>

> Date: Thursday, March 11, 2010, 10:23 PM

>

> I have been diagnosed with polymyositis. I have been on Minocin for four

> months (100mg m-w-f) I think I'm a little stronger. My CPK was 7,000. I had

> blood drawn today and hope the CPK has gone down.

>

> My bigger concern is my lungs. The Poly has caused me to have fibrotic

> changes and some scarring. The doctors say they don't know why Poly causes

> lung complications. I was wondering if any of you have lung scarring and if

> Minocin has improved your lungs. Or are you stuck with bad lungs forever?

> Thanks for any info I may receive.

>

>