polymyositis

[Guest guest]

Glen, I think I responded to just your email earlier since my

message I wrote never showed up...I'll try again...

Anyway, Hi Glen, and Everyone, I too am new here and have recently

been diagnosed with UCTD (Undifferentiated Connective Tissue

Disorder) overlap w/scleroderma and polymyositis. At first he thought

it was Scleroderma alone, but I didn't fit all the criteria so he

changed it to UCTD). At my request, my Rheumy prescribed Minocycline

although because it's not " textbook " does not believe it will work.

I'm on 100 mg 2xday, which I thought was a little high. I'm also on

750 mg Penacillimine (up from 250mg) and Prednisone, 15 mg (up from

40mg). I also started physical therapy this week. I'd also like to

know what a typical dose of minocycline is and would also like to

hear about others experiences w/different meds/therapies, what has

worked, what hasn't... Thanks!

> Hello Everyone!

>

> I'm a new member, and have been diagnosed with polymyositis. I've

> begun taking Minocin, 100 mg. per day. Is this the right dose, or

> should it be something different? Please advise!

>

> Glen

[Guest guest]

Glen & - hi! I was dx with DM in 1996. I found AP in late 1998 -

I used 100mg Minocycline 2x on MWF... I achieved remission and relapsed in

2001 after having my daughter. I then used 250mg Erythromycin 2x daily...

again achieved remission. Some get dizzy on daily dosing of

minocycline/Minocin, others start out with daily dosing for a couple weeks

and then go to MWF... some can only tolerate 50mg MWF... it is a process of

trial and error sometimes to figure out what will work for you. Read as

much as you can - it is important to know other's experiences with different

antibiotics, candidas (yeast), IVs, anti-fungals, hormones, etc. For me, I

responded excellent to oral antibiotics and taking acidophilus to keep from

getting yeast infections.

Post anytime you have questions!! Good luck!

Liesl

[Guest guest]

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]

Dolores,

My son (14) mycoplasm pneumonae was off the chart but the doctors act like it is

nothing. He did not have a cold or cough at the time either. He was first

diagnosed at 13 with jra, then sleroderma, mophea, mctd and now chronic lyme

disease. He has been on mino since May of last year and in july went to mino

every day 100 mg 2x/day. Since December he has been on the same does for mino

and his llmd added azithromycin 250mg bid. We saw a rheumatologist yesterday

because his hands are so bad and she wants to put him on enbrel for 4 months.

Can anyone give me any help?

Sue – ryan’s Mom

From: rheumatic [mailto:rheumatic ] On Behalf Of

mike rosner

Sent: Friday, March 12, 2010 1:43 PM

rheumatic

Subject: Re: rheumatic polymyositis

The reason you have pulmonary fibrosis is because you probably have micoplasma

pneumonae which is one of the cell wall deficient bacteria that morphs into

L-forms and attacks your immune system. I also have pulmonary fibrosis and

scleroderma. I was not expected to live long as it is known to be a progressive

disease. However, I left my docs stunned when I went on Minocin. Not only did

the lung disease stop progressing, but it started receding. My lung capacity,

last testing was 55% capacity. I function fine on that. True, I don't dance as

long or run as far, but then I am also 73 yrs. old and not supposed to. My

finger squeeze 02 on room air is 99% or 100%. On uphill climbs of steep steps,

I take it a bit slower and fill up my lungs for the hike. Rest a bit if I run

low on oxygen and then resume the climb. I snorkel but don't dive. I hike, but

rest often and take water with me. My disease has not stopped me from living

normally

and yours shouldn't either. If you are not on the antibiotic, I suggest you

find a doc who will prescribe it. It will attack and help reduce the micoplasma

count, which is the cause of so many of these diseases.

People with IPF should have a test for Pulmonary Hypertension. That is the

dangerous part. So, if you haven't been tested for that, do so. It is done on

a treadmill, usually performed by a cardiologist. I've had it done 3 times in

the past 5 years and it has always been normal. I keep my blood pressure down

because I also have an aneurysm, And I don't push it over my capacity. There is

no need as I can do most things anyone else can do. There is no need to run

when you can walk.

Eva and I have met when she visited me while I was in Texas and she can tell you

that I can run up a flight of steps. She saw me do it. I don't do it often, but

in case of emergency, I know I can save myself and probably others. Eva is

also doing so much better and I am proud of her. She works hard at helping

others and that is what this support system is all about. Take care, my dear

and have hope. This too, shall pass. The best to you, Dolores.

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

>

Subject: rheumatic polymyositis

rheumatic <mailto:rheumatic%40>

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.

[Guest guest]

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,

I am glad your husband managed to get better.

how long has he taken antibiotics and what dosage?

what kind of natural supplements is he taking?

thanks,

ra for 24 years

azithromycin, ldn, supplements

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]

Hi .  Absolutely not.  Stay away from any of those toxic drugs.  They

are the bandaids use to cover up when the doc throws up his hands and doesn't

know what else to do.  He is just trying to buy some time and your son will end

up worse in the long run. My cousin died at 16 by taking those kind of drugs. 

Continue with the Minocin 100mg twice a day.  Your son initially may get worse

for a while, but he will turn a corner.  If you can order  a book

called,  " The New Arthritis Breakthrough " by Henry Scammell "  .  It is actually

two books in one.  In the middle of the book, There is another book called,

" The Roadback, writtten by Dr. MacPhersen Brown.  They explain the A/P

better than I can.  They are a must read if you want your son to live.  You

can get this book cheaply, new or used, at Amazon.com.  Because he has

scleroderma, I also suggest you buy, " Scleroderma " , " The Proven Therapy That Can

Save Your life " , by Henry

Scammell. These books will open up a new world for you and explain

everything. Amazon.com has both of them. There is also a FAQ sheet that is

posted on this site every few weeks.  Just ask for " The Antibiotic/ Protocol's

most frequently asked questions and the moderators will post it for you.  I

think it was posted about a week ago.  Everyone has a copy, so just ask, it

will appear.  I have been at death's door and so despondent, I didn't know

where to turn.  I, too have scleroderma, r/a, MCTD, pulmonary fibrosis & lupus

anticardiolipins diagnosed in 2005 after 2 years of severe pain.  It has been a

long fight, but I am in remission today and living normally.  The first thing I

did was buy the books and book an appt. with an A/P specialist who will not

suggest you give him enbrel.  The word makes me shiver.  Take care and best to

you and your precious young man. Stay in touch!  Dolores & Mike  

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

net> >

Subject: rheumatic polymyositis

rheumatic@grou ps.com <mailto:rheumatic% 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.

[Guest guest]

Dolores,

We have read both books and that is why he started the minocycline last year.

The problem is, because he is only 14, the joints on his hand are deformed and

we are afraid that there will be permanent damage. His scleroderma (morphea) is

gone, the skin has softened up and the hair has grown back but his hands are

horrible and I fear they are getting much worse. The inflammation is gone (no

more sausage fingers), but the joints are sticking up all over the place. He can

not bend his wrist, make a fist, or lay his hand flat. I am just so scared that

the AP is not working fast enough for his growing body.

Sue

From: rheumatic [mailto:rheumatic ] On Behalf Of

mike rosner

Sent: Friday, March 12, 2010 5:27 PM

rheumatic

Subject: RE: rheumatic polymyositis

Hi . Absolutely not. Stay away from any of those toxic drugs. They are

the bandaids use to cover up when the doc throws up his hands and doesn't know

what else to do. He is just trying to buy some time and your son will end up

worse in the long run. My cousin died at 16 by taking those kind of drugs.

Continue with the Minocin 100mg twice a day. Your son initially may get worse

for a while, but he will turn a corner. If you can order a book called, " The

New Arthritis Breakthrough " by Henry Scammell " . It is actually two books in

one. In the middle of the book, There is another book called, " The Roadback,

writtten by Dr. MacPhersen Brown. They explain the A/P better than I

can. They are a must read if you want your son to live. You can get this book

cheaply, new or used, at Amazon.com. Because he has scleroderma, I also suggest

you buy, " Scleroderma " , " The Proven Therapy That Can Save Your life " , by Henry

Scammell. These books will open up a new world for you and explain everything.

Amazon.com has both of them. There is also a FAQ sheet that is posted on this

site every few weeks. Just ask for " The Antibiotic/ Protocol's most frequently

asked questions and the moderators will post it for you. I think it was posted

about a week ago. Everyone has a copy, so just ask, it will appear. I have

been at death's door and so despondent, I didn't know where to turn. I, too

have scleroderma, r/a, MCTD, pulmonary fibrosis & lupus anticardiolipins

diagnosed in 2005 after 2 years of severe pain. It has been a long fight, but I

am in remission today and living normally. The first thing I did was buy the

books and book an appt. with an A/P specialist who will not suggest you give him

enbrel. The word makes me shiver. Take care and best to you and your precious

young man. Stay in touch! Dolores & Mike

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

net> >

Subject: rheumatic polymyositis

rheumatic@grou ps.com <mailto:rheumatic% 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.

[Guest guest]

Hello Br,

thank you for responding so promptly

I suggest your husband uses ALA for fixing the mitochondria that gets damaged

with the long course of some antibiotics, ex: bactrim. just finished reading an

article on this exact subject.

He also needs to be careful with the sugar intake, in any form, even honey,

while on antibiotics because of the candida connection. I found out that oregano

oil helps with that or fluconazole twice a week.

his cough can be bacterial or fungal triggered; cough at night is usually an

infection.

good luck,

EMAILING FOR THE GREATER GOOD

Join me

rheumatic

From: REDDEROTH4@...

Date: Sat, 13 Mar 2010 02:29:07 +0000

Subject: Re: rheumatic polymyositis

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]

Hi Br.  I am the one who was diagnosed with  Pulmonary Fibrosis first and then

many months later, Scleroderma then  R/A then MCTD and I was at death's

door.  Lost 40 lbs.  I was bedridden and couldn't roll over in bed.  The

pain was unbearable, It  made me cry.each time I moved.  I was initially

offered COMFORT in the form of these toxic steroidal drugs and Chemo. I refused

once I was introduced to A/P.  I read the books and sought out an A/P

Rheumatologist.  I was tested and came out positive for micoplasma pneumonae

antibodies. My body was making the antibodies, but I was losing the battle. 

 I was being attacked by the same bacteria I was reading about.  Made an

appointment with Dr. Trentham in Boston, Head of Rheumatology at Harvard who

puts all of his patients on A/P. I started A/P in January 2006 and began

improvement almost immediately much to the surprise, no shock,  to my

pulmonologist who was with the group that had written

me off for dead and said there was no cure, but could keep me comfortable

during my dying phase.  Had I listened to them, I would not be here now.  The

antibiotic halted the spread of the pulmonary fibrosis and every other fibrosis

in my body.  I also had heart, lung problems. Had 4 heart surgeries prior to my

diagnosis. I function very well on the 55% lung capacity I was left with.  Not

only did the progression of lung damage get halted, it evem reversed some of

the damage and I have no experienced any more lung  or heart problems to

this day.  I never went on Prednisone. Today I am in remission.  My blood

work is completely normal and all I did was follow A/P, & M/P which is just

another form of A/P.  I am now going to be tested again for the micoplasma to

see if the count went down.  Micoplasma is a common bacteria. A healthy immune

system can handle the bacteria and most people do not get deathly ill.  These

cell - wall deficient

bacteria who can morph into an L-shape are a cross between a bacteria and a

virus are small enough to overtake the immune cells which protect us. They are

slow growing. They live in the cells as parasites for many years and kill off

the immune cell, by killing the DNA and injecting their own DNA.  The problems

start when they have multiplied so much and have taken over so much function of

our immune cells that they overpower the immune system and when the body cannot

deal with the overload any longer, we get sick  This is called a TH 1

disease.  That means that the immune system has been compromised.  A Th2

disease means that the immune system has been wiped out as in the case of

AIDS.  I was at the TH1 point and heading to the Th 2 stage.  I thank God for

leading me to the to  Roadback.org site where I learned about the group whose

arthritic type diseases were many.  I learned that there are other bacteria

that do deadly damage as well.  I

learned a lot.  And am still learning. I learned from experience.  I learned

from doctors. My connection  between Scleroderma, Pulmonary Fibrosis, R/A.

MCTD and micoplasma  pneumonae was the discovery that I was infected by

micoplasma pneumonae and my immune system was shutting down.  Apparently your

husband has also been tested or you would not know what was causing his

pneumonia.  I am glad your doctor is working on lowering the Prednisone

dosage. If the inflammation is down, then the Minocin will work to its' full

potential.  My belief is that prednisone hampers the action.  Prednisone and

antibiotics do not belong in the same body in my most humble opinion.  I

wish a speedy and permanent recovery  for you and your husband.  I am now on

a maintenance dose of 100mg Minocin MWF as I never want to allow the Micoplasma

Pneumonae to take over my immune system ever again.  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.