Polymyositis

[Guest guest]

Hello everyone. I am new to this group. I have joined in the hopes that I may

be able to offer some assistance to my mother who has severe polymyocitis

with very progressive mucle weakness and incredible pain in her upper arms

and upper legs. She currently takes Darvocet every 4 hours for pain (barely

helps) and goes every week for a methotrexate shot. She's 79 years old and

can barely make it around her apt with a walker. She has tried prednisone but

it shoots her blood pressure up so had to stop, also had an IVIG treatment

several years ago which also had adverse reactions to her BP ( went way over

200!) Her muscle weakness is progressive as is this pain she is experiencing.

Her rheumatologist is useless! Does anyone have any experience, advice,

direction or assistance to offer in relation to ANYTHING that is new on this

subject? Is there a rheumatolgist or neurologist on this forum? Are there any

new medications that have recently been introduced? Whether for pain

management or polymyositis? Is there any hope for this condition? Her muscle

bipsy showed " inflammation " but has all the symptoms of polymyositis with

several years of progression now. It's now at it's worst point ever and I

feel totally helpless.

Nobody else in the family has ever had anything like this before, But

interesting enough, I am a medical lab tech and one day a few months ago I

had tested my own ANA and lo and behold...it showed a positive titer 1:64

Nucleolar pattern. I'm scared that this may be happening to me too although I

am a healthy 46 year old with no apparent symptoms (yet!) I have been

diagnosed with uterine fibroids and wonder if the elevated ANA may be due to

that since fibroids consist of muscle and connective tissue.

In any event, any help I can get for my mother would be so greatly

appreciated. We live in the Tampa Bay area of Florida (Largo and Clearwater).

I am so scared that she will be in a wheelchair soon as she is not getting

any better. Thank you all in advance for your kind replies.

Beth

[Guest guest]

Dear Beth,

Welcome to the group

The founder of our group, Ethel Snooks had severe RA and polymyositis for 17

years before recovering on antibiotic therapy. Perhaps you would like to read

our web page at rheumatic.org, especially the FAQ at rheumatic.org/faq.htm,

Dr. 's clinic notes at rheumatic.org/martin.htm and Dr. Joe

Mercola's

physicians' protocol at rheumatic.org/protocol.htm. Polymyositis would be

treated

in a similar way to RA for this therapy so everything on the web page is also

applicable to your mother's condition.

Then we can answer questions that you might have. I think someone posted the

name of a doctor in Tampa who is on our list.

Yes, we have a rheumatologist in this group but he's a bit busy at the moment

and will probably re-appear soon. There are many medically-related professionals

in this group, so just let us know how we can help you.

Chris.

>From: flalabtec@...

>

>Hello everyone. I am new to this group. I have joined in the hopes that I may

>be able to offer some assistance to my mother who has severe polymyocitis

>with very progressive mucle weakness and incredible pain in her upper arms

>and upper legs. She currently takes Darvocet every 4 hours for pain (barely

>helps) and goes every week for a methotrexate shot. She's 79 years old and

>can barely make it around her apt with a walker. She has tried prednisone but

>it shoots her blood pressure up so had to stop, also had an IVIG treatment

>several years ago which also had adverse reactions to her BP ( went way over

>200!) Her muscle weakness is progressive as is this pain she is experiencing.

>

>Her rheumatologist is useless! Does anyone have any experience, advice,

>direction or assistance to offer in relation to ANYTHING that is new on this

>subject? Is there a rheumatolgist or neurologist on this forum? Are there any

>new medications that have recently been introduced? Whether for pain

>management or polymyositis? Is there any hope for this condition? Her muscle

>bipsy showed " inflammation " but has all the symptoms of polymyositis with

>several years of progression now. It's now at it's worst point ever and I

>feel totally helpless.

>

>Nobody else in the family has ever had anything like this before, But

>interesting enough, I am a medical lab tech and one day a few months ago I

>had tested my own ANA and lo and behold...it showed a positive titer 1:64

>Nucleolar pattern. I'm scared that this may be happening to me too although

I

>am a healthy 46 year old with no apparent symptoms (yet!) I have been

>diagnosed with uterine fibroids and wonder if the elevated ANA may be due to

>that since fibroids consist of muscle and connective tissue.

>

>In any event, any help I can get for my mother would be so greatly

>appreciated. We live in the Tampa Bay area of Florida (Largo and Clearwater).

>I am so scared that she will be in a wheelchair soon as she is not getting

>any better. Thank you all in advance for your kind replies.

>Beth

>

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

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>1/913/0/_/532797/_/951671534/

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

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>

>

[Guest guest]

Beth,

The drugs your mother is on only mask the symptoms. They do nothing to

get to the root cause of the disease.

I too had polymyositis so I know what your mother is going through. I

had to be bathed, dressed and at times fed. For long periods of time I

could only lift a fork about an inch off the plate. I'd then suck the

food off the fork because I couldn't open my mouth wide enough to get

the food in. Then there were the times the swallowing muscles wouldn't

work to swallow food but I could drink. The family would dish up my

plate and then put it in the blender with enough liquid to make it thin

enough to drink through a straw. My story is on

http://www.rheumatic.org.htm

There is help for your mother, and not too far from you. She will need

both oral and IV therapy. She also needs to be sure she is eating a good

diet, drinking plenty of water (2-3 quarts min. daily) and having proper

elimination.

Download the Frequently Asked Questions Section for your self and your

mom as a guide to refer to as your mom goes through the therapy, and

download two copies of Dr. 's protocol - keep one and take one to

Dr. Joe DeStefano in St. sburg and ask him for this therapy. Tell

him Ethel who works with Dr. recommended you to him.

The therapy takes time. For me it was 22 months but it could be more or

less. Be prepared for a period of her getting worse before she gets

better.

BTW, I'm nearly 74 years old. You mother should not hesitate to start

this therapy because of her age.

You will find plenty of help for your mother on this list as she goes

through the therapy.

Dr. ph DiStefano

Medical Center for Preventative & Nutritional Medicine, Inc.

8085 38th Ave.

St. sburg, FL 33710

Phone: 727-572-6745 or

727-344-3134

Ethel

flalabtec@... wrote:

>

> From: flalabtec@...

>

> Hello everyone. I am new to this group. I have joined in the hopes that I may

> be able to offer some assistance to my mother who has severe polymyocitis

> with very progressive mucle weakness and incredible pain in her upper arms

> and upper legs. She currently takes Darvocet every 4 hours for pain (barely

> helps) and goes every week for a methotrexate shot. She's 79 years old and

> can barely make it around her apt with a walker. She has tried prednisone but

> it shoots her blood pressure up so had to stop, also had an IVIG treatment

> several years ago which also had adverse reactions to her BP ( went way over

> 200!) Her muscle weakness is progressive as is this pain she is experiencing.

>

> Her rheumatologist is useless! Does anyone have any experience, advice,

> direction or assistance to offer in relation to ANYTHING that is new on this

> subject? Is there a rheumatolgist or neurologist on this forum? Are there any

> new medications that have recently been introduced? Whether for pain

> management or polymyositis? Is there any hope for this condition? Her muscle

> bipsy showed " inflammation " but has all the symptoms of polymyositis with

> several years of progression now. It's now at it's worst point ever and I

> feel totally helpless.

>

> Nobody else in the family has ever had anything like this before, But

> interesting enough, I am a medical lab tech and one day a few months ago I

> had tested my own ANA and lo and behold...it showed a positive titer 1:64

> Nucleolar pattern. I'm scared that this may be happening to me too although I

> am a healthy 46 year old with no apparent symptoms (yet!) I have been

> diagnosed with uterine fibroids and wonder if the elevated ANA may be due to

> that since fibroids consist of muscle and connective tissue.

>

> In any event, any help I can get for my mother would be so greatly

> appreciated. We live in the Tampa Bay area of Florida (Largo and Clearwater).

> I am so scared that she will be in a wheelchair soon as she is not getting

> any better. Thank you all in advance for your kind replies.

> Beth

>

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

> Get what you deserve with NextCard Visa! Rates as low as 2.9%

> Intro or 9.9% Fixed APR, online balance transfers, Rewards Points,

> no hidden fees, and much more! Get NextCard today and get the

> credit you deserve! Apply now! Get your NextCard Visa at:

> 1/913/0/_/532797/_/951671534/

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

[Guest guest]

Hi Betty,

Certainly hope you will take Connie's suggestion and read the book

she cited. Luckily, a lady at the bookstore recommended it to me the

same day I received an RA diagnosis -- one of the luckiest days of my

life!

The high dose of prednisone will eventually have grave consequences

to your husband's bones, and more. Being on AP will allow this

dosage to be steadily reduced. Dr. Brown, whose work the book is

based on, was a renowned rheumatologist and treated 10,000 people

with great improvement -- also the great apes who were about to be

euthanized in the zoos around the country. (Never mind that the

majority of " mainstream " physicians reject this treatment; this IMHO

is based on ignorance and insanity!)

Best to you and your husband,

bg

> > Hi everyone.

> > My husband has PM and is currently taking 80mg of prednisone

> daily.He

> > has been taking prednisone since August 2001.I have asked his

> doctor

> > about taking antibiotics and was told we would have to wait until

> his

> > CPK blood work was normal before he could begin the antibiotics.

My

> > question to everyone is at what point should antibiotics really

be

> > started?

> > Thanks

> > Betty

[Guest guest]

I would start at 100mg 3 times a week and work up slowly if necesary, 100mg twice a day is the max dosage.

If your in nashville you should drive down to chattanooga and see my doctor, he is an excellent AP doc.

rheumatic polymyositis

My dadinlaw (80) was diagnosed with polymyositis several years ago. His doctor has had him on prednisone all this time & there have been no positive results. I have ordered a supply of Minocin (minomycin 100mg) after visiting the rheumatic.org website and reading how this drug has helped people with this disease. When we receive the minomycin, what dosage should he take?Many thanks,Mike in Nashville To unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

Dear Sherri,

> I am going

> to ask my Doctor for the minocin and hope she will give it to me. How

> do I

> take it and how often? Will it work without have the IV's that was

> discussed

> first?

I just posted a list of California doctors which may help you.

Minocycline is taken as 100-200mg on Monday Wednesday and Friday,

according to individual tolerance. You should start slowly, about 50mg

Mon and Fri or 50mg Mon Wed and Fri and then work up slowly by about

50mg per week. Many people recover on oral minocycline alone. Very

severe patients often do better with the IVs, but it's often hard to

get doctors to do them. I'd try to get the oral antibiotic first.

Chris.

[Guest guest]

Hi ,

The minocin is a good start.Please start slow as the inflammatory

nature of your disease would warrant that.If you are sensitive to

meds some start with 50 mg MWF.If you have been ok with meds the 100

mg MWF is a great starting point.

The dose can be adjusted from that point. You should read the FAQ(

posted above as these will help you immensely!

The docs will write this out for 100 mg every day 2x a day as that's

the clinical trial dose and they seem comfortable doing that.

Many docs feel this has only anti inflammatory benefits but we on

this therapy know that it is antimicrobial as well.

You will need acidophilus to protect the gut.

In the beginning, if you do feel a the herx, I ahve used benedryl at

night as wellas peroxide baths.

Please read the www.rheumatic.org site. There is much there for you

and your doc to learn.

if you have questions, please stay in touch! Come to the chats

too.That will help as well.( Tonight at 9pm EDT)

Love

Marge

> Hi, I was diagnosed 4/03 with polymyositis. I also have HepC which

is in

> remission at the present time. My liver is not in real good shape

so a lot of the

> meds they usually treat this disease with are out of the question.

The

> antibiotic therapy sounds promising and gave me a glimmer of hope

again. I am going

> to ask my Doctor for the minocin and hope she will give it to me.

How do I

> take it and how often? Will it work without have the IV's that was

discussed

> first? I have Kaiser Insurance and live in Bakersfield, Ca. and it

seems like

> the docs here know very little about this disease. Please someone

help.

> Sherri

>

>

>

[Guest guest]

rheumatic Polymyositis

> 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

You will find information on dosage in the Frequently Asked Questions

section at www.rheumatic.org.faq.htm. Use this FAQ as a guide to your

therapy.

Ethel

>

>

>

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

[Guest guest]

Hello, ,

Many years ago, I began the AP with the dosage of 100 mg. Minocin,

nongeneric, twice daily on MWF. Other than for a few times of switching to

Tequin and then returning to the Minocin a month later, I have continually been

on and remained at this dosage. My very out of date story is posted at the

site. Since the last posting, I have also done hydrogen peroxide, phosphatytyl

choline, DMSA, many myers cocktail and clindamycine iv's. I have also done the

far infrared sauna. My scleroderma continues to take a back seat to my living

life now. In addition to that, I have worked very hard at ridding myself of

any negative emotional issues and learning meditation. I continue to do that.

I have just returned from my first treatment of ionic cleanses and Laser

Acupuncture Detoxification to finally rid myself of any pesticides I carry. As

of last week, my doctor took me down to only one Minocin MWF and is

contemplating the complete removal of such. I am not mentally ready for this

but we also have brought me WAY down on any and all ivs with the intention of my

finally being able to wean off of them.

This probably all sounds like to much to even contemplate at your beginning

stage in this journey but mine has been over a period of years with continued

improvement and a return to a wonderful life filled with lots of physical

activities, husband. children and grandkids. Speaking of physical, I would

push you to go through the pain, and yes, I do know what this means, and do yoga

as much as you can and any other physical activity where you will push your

muscles. You do not want to give into that.

Best of luck on this journey. Fain, scleroderma survivor

[Guest guest]

Did you get immediate relief after starting the antibiotics or at least within a

month or so? Had you tried the prednisone, plaquenil and methotrexate before

opting for the antibiotics? Did your insurance pay or help pay for your

treatment? Which doc did you end up seeing? The closest MD is a Dr. Al Franco

in Riverside CA and I'm going to make an appointment this week............has

anyone heard anything about him or been treated by him? Sorry for all the

questions.............itching is driving me crazy and all these meds are doing

nothing........I'm in the process of reading the " Breakthrough " book and will

hopefully have a better understanding...............any info is

appreciated...........

rheumatic RE: Polymyositis

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

To unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

Wanted to share with you that I have DM and used AP. I am in remission now

and off all meds. You can read my story on both www.rheumatic.org medical

histories (Lee DM) or www.rheumaticsupport.net stories page. On the second

website I mentioned is a story of a gal that has come to be a friend to me.

Her name is N and she too had DM as well as Lupus. She lives in FL

and sees Dr. Todd for AP. I hope that you and your husband will

pursue AP for his polymyositis. If you have any questions you can reach me

at LDutro@...

[Guest guest]

Hello there. I have had great success with the Minocin therapy. I had been

diagnosed with RA for 8 years before coming across this. Was on daily doses

of prednisone and plaquenil and of course pain killesrs. Doc wanted to put

me on MTX and I balked. I asked to try Minocin and was rewarded with a

lecture on how stupid I was and how MTX had no side effects...yah! Right!!!

On the bright side I got so mad I told her she was fired and drove out

of state to find the nearest AP doctor. I was in complete remission in six

months and off all meds except a maintanance doses of minocin mon-wed-fri.

That was four years ago. After three and a half years I came out of remission

went back on minocin twice a day and am again getting lose to remission. My

regular GP now takes care of me as I had records and tests that showed how

effective the minocin was for me. I am now awaiting my latest bloodwork to

see if I can drop my minocin down again. Also test showed that I have had

no further damage to joints since being on minocin and even some

regeneration!! That certainly would not be the case had I stayed on the

standard meds.

Martha

[Guest guest]

Mia - I'm glad that you found this group so early on in your husband's

diagnosis of Polymyositis (PM). I have DM - dermatomyositis, similar to PM

with muscle pain and weakness and also a rash. If you haven't had a chance

to read through the medical histories on www.rheumatic.org do, you'll find

my story Lee - Dermatomyositis as well as others. Antibiotic therapy is not

the traditional route of treatment but it is one that works and works well

for many. I know many who have PM who've used this therapy and they are

much better. I am in remission now, off all meds and I have no symptoms of

DM any more. I was dx at 28 years old in 1996.

If I can help further, you can email me at Ldutro@...

Liesl

[Guest guest]

Kris,

Where do you live? I have a .pdf document that I'm currently looking for that

lists doctors supporting the Antibiotic Protocol Therapy.

Janna

krisesmarykay <krisesmarykay@...> wrote:

Would like to discuss with others who have PM, symptoms, meds, doctors,

etc. I'm trying like all get out to get my Rheumatologists (I've had 4-

I moved once, one retired, next one moved) to try Minocin therapy.

Mother has DM and after 12 years of gamma & all other drugs, the

Minocin therapy was the only thing that saved her.

I really am looking for support. It seems that my mother is the only

one who understand the disease and she is 1500 miles away.

Thanks.

Kris Coffin

To unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

Hi hollar9,

We have a list of the studies done on our web page at

http://rheumatic.org/studies.htm - most of these studies were done with

rheumatoid arthritis patients, but Dr. Brown 'lumped' several of these

diseases in the same category and treated all alike. The Mayo Clinic is

using this therapy now and here in Australia minocycline is listed for

doctors as a choice of therapy for rheumatic disease.

Dr. Brown used a slow start method - try starting on 50mg Monday and

Friday and then work up slowly by 50mg per week until you're on

100-200mg Mon Wed and Fri. If at any time you feel you don't want to

take any more, then stay at the dose you're on. Following is our list

of Arizona doctors.

Welcome to the group and please ask us any questions and we'll help

Chris.

A. Epstein, M.D. - RHU

Northern Arizona Medical Specialty

77 W. Forest #102

Flagstaff, AZ. 86001

P: 520-773-2560

F: 520-773-2106

also a Dr. Epstein (maybe the same doctor) – not in AMA or phone

directories

Sedona Medical Centre,

Sedona, AZ

F. , M.D. (rheumatologist, IV & oral) – 1979

Caldron, M.D.

Arizona Arthritis & Rheumatology Assoc., P.C.

10599 N. Tatum Blvd., Suite F150

Paradise Valley, AZ 85253

P: 480-443-8400 (Must ask specifically for antibiotic therapy)

F: 480-443-8697

Offices also in Mesa, Tempe, Glendale & sdale

Dr. Dana Keaton 5333 N. 7th St. Suite 221 or may be – 5702

No. 4th Place

Phoenix, AZ 85014 Phoenix, AZ 85012

P: 602-266-4670

E. Fry, M.D. – 1990 – just started using therapy summer 2000

Microbiology, molecular biology, pathology

15720 Greenway Hydn Loop

sdale, AZ 85260

P: 480-991-4555

Sanford Roth, MD – RHU

Arthritis Care & Research

3330 N. 2nd St. #601

Phoenix, AZ 85012

P: 602-234-3444

F: 602-277-9205

On 31/05/2006, at 2:15 AM, hollar9 wrote:

> Hello all. I've had Polymyositis for 3 years. I've tapered down to 5mg

> of prednisone and I just begin the antibiotic treatment and I'm taking

> 100mgs of minocycline twice a day for the first week and then once a

> day thereafter. I need some help on my diet, dosages, and what to

> expect., because my Doctor don't believe in antibiotic protocol. He's

> just doing it because I told him I really wanted to try it and nothing

> else is working. He said he need proof of studies that worked. If

> anyone can direct me to a site where I can show him its not a hoax

> please do so. I'm currently in Surpise, AZ. Are there any Doctors that

> support the protocol and take insurance? I have medicare.

>

>

>

>

>

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

[Guest guest]

Well, at last my husband has a definitive diagnosis.

His disease has been identified as polymyositis and since Bob (my husband) is

not that keen on computers unless it is work related and then only if he has

too <g> I hope that it is okay if I hang around reading and occasionally

asking a few questions.

Thanks,

Sharon

Austin, TX

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

Check out AOL's list of

2007's hottest products.

(http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001)

[Guest guest]

Hi, Sharon.

I'm glad your husband finally has his diagnosis, but I'm sorry it's

polymyositis.

Of course you are welcome to stay. I hope you've also looked for

groups which are more specific to polymyositis, since we don't discuss

it very often here.

Not an MD

On Nov 27, 2007 12:03 AM, <smorwo@...> wrote:

> Well, at last my husband has a definitive diagnosis.

>

> His disease has been identified as polymyositis and since Bob (my husband) is

> not that keen on computers unless it is work related and then only if he has

> too <g> I hope that it is okay if I hang around reading and occasionally

> asking a few questions.

>

> Thanks,

> Sharon

[Guest guest]

Hi Sharon,

I am glad that you finally have a diagnosis. Its great to have people from

all Dx to chat with as sometimes the symptoms can mask each other and we

might find something new that will help us or something that will help him.

Heidi M

On 11/27/07, smorwo@... <smorwo@...> wrote:

>

> ,

>

> Thank you for agreeing to allow me to continue to my membership.

>

> I originally joined this list due to Bob's list of possible diagnosis's

> and

> have greatly enjoyed not only the links as well as the caring members

> however

> yes, I am looking at other lists that would address polymyositis more

> frequently.

>

> Best,

> Sharon

> Austin, TX

> ****

> In a message dated 11/27/2007 9:03:59 AM Central Standard Time,

>

Rheumatoid.Arthritis.Support@...<Rheumatoid.Arthritis.Support%40gmail.com>\

writes:

>

> > I hope you've also looked for

> > groups which are more specific to polymyositis, since we don't discuss

> > it very often here.

> >

> >

> > Not an MD

> >

>

> **************************************

> Check out AOL's list of 2007's hottest

> products.

>

> (http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001)

>

>

[Guest guest]

:

 

I have Dermatomyositis, very similar to Poly.  I just wrote a long email about

what I've learned so far - it may be helpful to you. 

 

Char

From: cabraljennifer30 <f4i_girl@...>

Subject: rheumatic Polymyositis

rheumatic

Date: Thursday, October 29, 2009, 6:48 AM

 

Hello,

I'm new here. My mom was diagnosed with polymyositis in 1994. The past year her

condition has worsened and she's lost a lot of weight. She's been on prednisone

all this time.

She was in the hospital for the last 17 days due to progressive weakness,

mal-nutrition and dysphagia.

I heard about this antibiotic therapy treatment and I am curious as to how it

works.

I tried emailing Ethel, but no response...i' m wondering if I have the wrong

email address.

Any information would be great.

Thank you,

[Guest guest]

no, you don't need to be stuck with bad lungs. I have pulmonary fibrosis and

take mino and NAC. I had a very good pulmanry function test in November after

using N-Acetyi-Cistein for one year.

Eva

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]

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@...>

Subject: rheumatic polymyositis

rheumatic

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]

Hi , I am not sure if you are asking about my husband or myself. We both

have diseases that affect the immune system. Mike's history is long and

complicated and he was never given antibiotics. He decided to take Minocin on

his own about a year and a half ago because Minocin worked so well for me. I

was diagnosed with Scleroderma in 2005, went to an A/P doc, started on

antibiotics immediately and am doing well. Why are you asking? How long have

you been on zith? And at what dosage? Have you ever taken Minocin? Are you on

steroids or immune suppressants? What have you done for the past 24 years to

alleviate your condition? And what is the state of your health now? Dolores &

Mike

>

> 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]

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]

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% 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]

Thank you so much Dolores

From: rheumatic [mailto:rheumatic ] On Behalf Of

mike rosner

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

rheumatic

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% 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.