Re: Re: Welcome to OurMyositis

[Guest guest]

Hello everyone, Hope all of you are doing well. I have been very bust

thank goodness I have the energy. I am trying to get a electric

wheelchair but unfortunately because I can walk the ins won't approve it.

BUT there is a second hand one available and MDA may get it for me. Has

anyone heard of the antibiotic therapy? Let me know. Take Care Helen

[Guest guest]

Hi Connie, Thankyou for getting back to me. You are right my Doctor has

not heard of the antibiotic therapy. How can I get more info to him as

he is very willing to know more to. I do not have the internet as yet.

I have been on the IVIG treatment which has helped but now the Doctor is

concerned with side affects kidney failure. I am on steroids 15 mil a

day. I am so pleased you are doing so well keep it up. Stay in touch

Helen

[Guest guest]

Hi again!

We also have a gentleman who's daughter has the disease

>and he has a wonderful site and has documented just about everything

>that has gone through.

Yes, I know Ralph's site, I wrote to him and to once last year.

He works so hard to keep this diary so well!

>This list is open to anything you wish to discuss. Even if you have a

>cute joke to share... do so... it might lift up another person.

There is one thing that a have on my mind all the time. At school,

it is time for the Hepatite B vaccine, and I don't want at all

my boy to have it. When he fell sick, he have had the Meningite

vaccine some weeks before... I always related his sickness to it,

even if I know that it may have a hundred causes... but I will be

afraid of vaccines for all my life! My youngest son didn't have any

vaccination after Philippe went sick. What do you think?

I also

>want to say that if the kids want to get on and talk to the other kids

>then please do so. I think it would be good for them.

>

Hmmm, you know as far as Philippe is doing well, we don't talk about

the illness to much... I'm afraid it makes it come back. I don't want

to " bother " him with it (even if *I* always think about it...) Maybe

it is some kind of supertition from me?

I wish everybody on this list all the best...!

Suz.

______________________________________________________

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[Guest guest]

> We also have a gentleman who's daughter has the disease

> and he has a wonderful site and has documented just about everything

> that has gone through. You might find this very interesting....

> here's the site...http://www.ralphb.net/JDMS/

Thanks for the plug.

> Hi Cari and Ralph.... hope the kids are doing great.

Not so great...

As faithful readers of the Diary know, had a fall about a week

and a half ago before school started. She scraped her elbow and banged

her upper arm. Took her to the doctor that day, and they diagnosed a

deep bruise. Over the next week and a half, she's got practically no

pain, but the arm has very limited strength and mobility.

Took her in to Children's in Boston for a regular Rheumy checkup, the

first since we stopped Solu-Medrol infusions 5 weeks ago. The docs

there all thought she either had a ligament bruise or damage, or

rotator cuff injury. Either would explain the weakness. Went to

radiology just to rule out a fracture, and we found - a fracture.

Symptoms explained.

Luckily, it's not severe and she just has to wear her arm in a sling

for a couple of weeks. Complete details (including images of the

x-rays!) are on the Diary.

Aside from that, we're switching from Plaquenil (going on 2 years

and no definite effect) to Atabrine.

Thanks for asking!

Ralph

==========================================================

Ralph Becker http://www.ralphb.net/

Will Juggle for Food. RKBA!

[Guest guest]

Fern, how are you doing.... feeling any better?

I am doing okay. I was better for a while after starting Neurontin. The

problem is that there has been so much stress. First the holidays, then a

sick friend who has almost died three times since Nov., and a child who is

having muscle pain, depression, and several other problems. I think the

stress has taken over. I am hanging in there and planning a visit to the

rheumy. It is just that is having such a hard time and that has to

come first. I have seriously been worried that he might hurt himself or

someone else because he has been so depressed. He has an appointment with

the psychiatrist tomorrow if the weather permits. We are supposed to get 6

inches of snow tonight.

Thanks for asking about me. I am still not giving up in my search for a

correct diagnosis or a correct diagnosis for my son. I really think he has

the same thing that I do because we are just alike.

Gentle hugs,

Fern

[Guest guest]

Fern... My heart goes out to you. I'm hoping that you find someone that

can help both of you. Are you close to any big research/training

hospital? I'm going to keep you in my prayers and hope that something

breaks soon. I wish there was something more I could do for you. Take

care and hugs to you and your son.

[Guest guest]

Hi Helen and Everyone,

Well, it's time I jumped into this group :-) I have been subscribed since

December and have been too busy to write.

Yes, Helen, I have not only heard of the antibiotic therapy I am living

proof that it works! I have been meaning to share my story with this group

for the last month. Some of the people in this group might remember me from

the dermatomyositis@onelist group.....we had to change e-mail providers, so

my e-mail is a little different. It is still me, Connie Hache. I remember

Cari, mother of little and I remember Teddi.....hello to you and

anyone else that I might have forgotten :-)

I will go into infinite detail for anyone who is interested in the

antibiotic therapy. To give you a quick run down on my story, I became sick

in Aug of 96, finally correctly diagnosed in April of '98 and had started

the antibiotics in Feb of '98.....just about two years ago. Since that time

I no longer take Relafen or any pain medication, my hands and feet don't

hurt, my muscle strength is improving, and I can't even remember all of the

many symptoms that have been eliminated....oh yeah, the brain fog is about

90% improved....some of it is due to being 45 years old :-) I also no

longer have the killer fatigue and I can't even predict the weather anymore

with burning muscles! There is lots of information at www.rheumatic.org I

plan to add my story to the list for others to see and learn from. The

trick is finding a doctor who is familiar with the antibiotic therapy and

how it is used in dermatomyositis. The problem is that many highly esteemed

doctors from the best universities and hospitals either aren't aware of the

antibiotic protocol, or they have been misled by others who have tried the

therapy and failed....not because the therapy doesn't work, but because they

didn't have the correct information and specifics.

Once a year I travel to Riverside, California to see Dr. Al Franco

who is one of the very best and most experienced doctors in treating many

people with connective tissue diseases like DM, RA, Lupus...etc. I go see

Dr. Franco on Feb 24.

Oh, I almost forgot the best part........since early December my CPK is

Normal!!! That was a definite sign for me that this is indeed the way to

go!

wishing you all a return to health :-) I enjoy the warmth and caring that

I see in this group :-) I am also a member of the support group for people

on the antibiotics who have rheumatic diseases rheumatic@... You

can check it out at the website at rheumatic.org......but I have to warn

you...there are over 300 members and there are usually 50 to 75 messages per

day :-) Similar to this site....very caring and informative, too.

take care, everyone,

Connie

Re: Re: Welcome to OurMyositis

>

>

> Hello everyone, Hope all of you are doing well. I have been very bust

> thank goodness I have the energy. I am trying to get a electric

> wheelchair but unfortunately because I can walk the ins won't approve it.

> BUT there is a second hand one available and MDA may get it for me. Has

> anyone heard of the antibiotic therapy? Let me know. Take Care Helen

>

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

[Guest guest]

Hi Helen

Was wondering what you were up to.....isn't

it the pits that ins doesn't give a hoot if you

ever leave the house.....as long as you can

stand up in the house you don't need an

elec.wheelchair......makes me so mad!!! Good

luck.

Teddi

[Guest guest]

Hi Connie

Welcome to the group....nice to hear from you

again and to hear that you are doing so well.

Teddi

[Guest guest]

Hi Helen,

Three cheers for your doctor who is willing to learn more :-)

Before your next appointment, you could do several things:

....have your local library get you a copy of The New Arthritis Breakthrough

by Henry Scammell

....at the same time, use the library's computers and printers to access the

physician's protocol and the FAQ (frequently asked questions) from the

www.rheumatic.org website

....you might want to also print off relevant information from the

www.immed.org website to give to your doctor

....contact the Road Back Foundation, I think their website is

www.roadback.org They offer information very similar to that of the

rheumatic.org website, only they charge $$ for their pamphlets. I was not

comfortable sending $$ money to an unknown group over the internet...being

skeptical that I am....I now know them to be 100% reputable, but the info is

also available at the other website. Anyway........they are conducting a

Physician's Seminar in Los Angeles on March 24 or 25....it would be great if

your doctor could attend. It covers antibiotic treatment for all of the

rheuamtic diseases, including myositis. They will send you a (free:-)

pamphlet concerning the seminar and their phone # is from 8:30a

to 6:30p Eastern time, Mondays thru Thursdays.

In addition, I will also forward an informal list of doctors who are

familiar with the antibiotic protocol. You are welcome to share it with

your doctor. It is a list compiled from the many people on the

rheumatic.org list who have seen much improvement in their diseases.

hope this helps and that you have good luck with your doctor,

Connie

Re: Re: Welcome to OurMyositis

>

>

> Hi Connie, Thankyou for getting back to me. You are right my Doctor has

> not heard of the antibiotic therapy. How can I get more info to him as

> he is very willing to know more to. I do not have the internet as yet.

> I have been on the IVIG treatment which has helped but now the Doctor is

> concerned with side affects kidney failure. I am on steroids 15 mil a

> day. I am so pleased you are doing so well keep it up. Stay in touch

> Helen

>

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