dermatomyositis

[Guest guest]

Hi Everybody

Was diagnosed with dermatomyositis last month, & am currently on prednisolone,

have read 'The road back' & am given hope, does anyone know if there are any

doctors in UK practicing it, or can it be done by mail from the US?

Thanks in anticipation

[Guest guest]

Hi - yes there are a few docs in the UK who do. Some people use an AP doc

who is based in Guildford Surrey and there are several who are current posters

on the Road Back Foundation Forum who are receiving AP or Lyme treatment from

the Breakspear Clinic in Hertfordshire. If you visit the RoRoad Back Foundation

Forum (www.rbfbb) you can get more details from them.I will email you the doc's

details in Guildford in the meantime. . Lynnie

>

> Hi Everybody

> Was diagnosed with dermatomyositis last month, & am currently on prednisolone,

have read 'The road back' & am given hope, does anyone know if there are any

doctors in UK practicing it, or can it be done by mail from the US?

>

> Thanks in anticipation

>

>

>

>

>

>

[Guest guest]

Love to hear these kinds of stories Suzan. What other natural meds/supps are

you taking? Thanks, sally

rheumatic dermatomyositis

rheumatic

Received: Monday, January 24, 2011, 5:12 PM

Dear Group,

I would like to hear from other people who have Dermatomyositis.

I am a 62 year old grandmother who lives alone.

I was diagnosed with DM in 2003 and rather than take immunosuppressants; I chose

to put up with the redness on face,neck, knuckles and thighs.

Then in May of 2010, I started experiencing muscle weakness in the shoulder and

hip girdle areas. My " rash " started to get worse on my forearms and chest. It

got to the point where I could hardly get out of a chair or my car and could no

longer lift my 20lb grandson.

Again, instead of taking steroids as my doctor reccomended, I went to a

Naturapathic doctor and went on a natural anti inflammatory (tumeric).

I now (within 2 weeks started getting more flexible), am about 80% better

muscle-wise and the redness is much better.

Can anyone else share their DM stories and/or treatments.

Gorrill Calgary, Alberta

[Guest guest]

I used to take fish oil, but lately I hear that fish oil gets rancid sitting on

the shelves.  Have you heard this.  Dr. Mercola is always putting out some

info on this.  Eating fish used to be the way to go, but then they discovered

high mercury levels, so what is a person to do?  any info from others on this

topic.  Dolores & Mike

From: susan.gorrill <sgorrill@...>

Subject: rheumatic dermatomyositis

rheumatic

Received: Monday, January 24, 2011, 5:12 PM

Dear Group,

I would like to hear from other people who have Dermatomyositis.

I am a 62 year old grandmother who lives alone.

I was diagnosed with DM in 2003 and rather than take immunosuppressants; I chose

to put up with the redness on face,neck, knuckles and thighs.

Then in May of 2010, I started experiencing muscle weakness in the shoulder and

hip girdle areas. My " rash " started to get worse on my forearms and chest. It

got to the point where I could hardly get out of a chair or my car and could no

longer lift my 20lb grandson.

Again, instead of taking steroids as my doctor reccomended, I went to a

Naturapathic doctor and went on a natural anti inflammatory (tumeric).

I now (within 2 weeks started getting more flexible), am about 80% better

muscle-wise and the redness is much better.

Can anyone else share their DM stories and/or treatments.

Gorrill Calgary, Alberta

[Guest guest]

Dear Group

I have also been diagnosed with dermatomyositis. My symptoms started in

November 2009 with the rash which I thought was simply allergies - then in

June 2010 severe muscle weakness set in and I could no longer drive or even

get up and down my stairs or get out of a chair. I am 46 and in Montreal. I

don't know about anywhere else, but here in Montreal it is very difficult to

" tell " your doctor which treatment you would prefer to have. I have spoken

with them re the AP therapy and they view Minocin " in a bad light " and if

you refuse their treatment you are viewed as being " uncooperative " .. As I

am dependant on med insurance through work I have to have a doctor that

follows-up with my insurance. My condition was so severe that I was

immediately referred to a rheumatologist who's treatment was of course the

immunosuppressants. I have been following this group for a little while now

in order to find out more about those who are on the AP treatment and have

also been taking natural products (i.e. grapeseed extracts from Melaleuca;

fish oils-which I store in the fridge; kelp extract for the thyroid. I have

also taken turmeric which, because of the advanced stage of my illness, was

very limited in effect). As I already have a problem with Candida, I have

also been taking a product called Pau D'Arco which so far seems to be

helping a little with the rash (I've only been on it for approx 3 weeks).

I would dearly love to get off the immunosuppressants and am almost off the

prednisone but am worried about getting a doctor here that has no problem

giving me the antibiotics but who is incapable of the proper follow-up for

my particular condition, as the one doctor that I have on the list has

treated mostly those with RA.

If anyone with a similar experience has any input re transitioning from the

immunosuppressants to AP with the support of their doctors without losing

insurance benefits, I would appreciate hearing your story.

[Guest guest]

Hi ,

I have had dm since 11/98. I developed it after getting a flu vaccine and had

it while pregnant with my first child. I didn't understand what it was and just

thought the rash and the weakness was part of pregnancy. During my pregnancy

things did get a little better but two months after Jake was born, I flared big

time and I could hardly pick him up. So I can relate. I had a 20 lb infant

that I could hardly care for. Those days were a real challenge. I was so

tired, in pain, and frankly scared out of my mind.

I started off using toxic drugs like prednisone back in 2000 to get things under

control. Doc wanted me to take methotrexate, I refused and chose to see Dr.

Mercola. I started following his recommendations and taking minocin around

7/01, I achieved remission in about 18 months and finally got of the minocin

2/2003. I stayed in remission until 10/08 and I flared again. I have been in a

weakened, rashy state since that time. I am working on trying to achieve

another remission.

Currently, I am trying to take homeopathic remedies to rid my body of heavy

metals, chemicals, fungi and yeast, and radiation. Then I will consider

starting up the minocin again. I am reluctant to take minocin because of the

effect it has on the digestive tract. I suffer from systemic candida and

minocin will just make that problem worse.

I have tested positive for mycoplasma and candida by blood tests.

Currently, I am having some problems with a scalp rash that is causing some hair

loss. I am very distressed about this.

I try to follow a whole foods diet because I am allergic to lots of things. I

feel better if I eat this way and I notice that the rash is better too. I follow

an anticandida diet to because I think the yeast causes my skin rash. My

biggest grip with this disease is the rash...so itchy and painful. I have

hyperpigmentation on my face due to the rash. Lovely.

Anyway, I am sorry that you have DM. But one can live with it. It's just a

challenge. I am hopeful and know that I can get better if I put my mind to it.

I am so against the toxic meds. I try to manage things with diet, herbs,

supplements, and stress management. And I want to begin incorporating exercise.

Good luck to you and feel free to contact me if you would like.

Suzanne

>

> Dear Group,

> I would like to hear from other people who have Dermatomyositis.

> I am a 62 year old grandmother who lives alone.

> I was diagnosed with DM in 2003 and rather than take immunosuppressants; I

chose to put up with the redness on face,neck, knuckles and thighs.

> Then in May of 2010, I started experiencing muscle weakness in the shoulder

and hip girdle areas. My " rash " started to get worse on my forearms and chest.

It got to the point where I could hardly get out of a chair or my car and could

no longer lift my 20lb grandson.

>

> Again, instead of taking steroids as my doctor reccomended, I went to a

Naturapathic doctor and went on a natural anti inflammatory (tumeric).

> I now (within 2 weeks started getting more flexible), am about 80% better

muscle-wise and the redness is much better.

> Can anyone else share their DM stories and/or treatments.

>

> Gorrill Calgary, Alberta

>

[Guest guest]

Last I heard, doc Mercola now recommends Krill oil. Dr Barry Sears does

research on his fish oils and RA. I took his for many months, maybe 4 bottles a

month. Can't say it helped. Now I'm taking omega (?) and DHA. This gets

frustrating and $$$$. What do do? sally

rheumatic dermatomyositis

rheumatic

Received: Monday, January 24, 2011, 5:12 PM

Dear Group,

I would like to hear from other people who have Dermatomyositis.

I am a 62 year old grandmother who lives alone.

I was diagnosed with DM in 2003 and rather than take immunosuppressants; I chose

to put up with the redness on face,neck, knuckles and thighs.

Then in May of 2010, I started experiencing muscle weakness in the shoulder and

hip girdle areas. My " rash " started to get worse on my forearms and chest. It

got to the point where I could hardly get out of a chair or my car and could no

longer lift my 20lb grandson.

Again, instead of taking steroids as my doctor reccomended, I went to a

Naturapathic doctor and went on a natural anti inflammatory (tumeric).

I now (within 2 weeks started getting more flexible), am about 80% better

muscle-wise and the redness is much better.

Can anyone else share their DM stories and/or treatments.

Gorrill Calgary, Alberta

[Guest guest]

Hello Celia,

Where did you get your oregano oil, and how do you use it? I have RA, but know

all are journeys are the same.....searching and Hope.

Blessings to you, sally

rheumatic Re: dermatomyositis

Hi ,

I have DM as well, dx about 7 years ago. I've never had much trouble

with the rash, but do have the muscle weakness. I also have

Interstitial Lung Disease and Raynaud's Phenomenon. Over the years,

I've been on prednisone and either cytoxan, imuran, or methotrexate. 19

months ago I was in drug-induced remission, and I stopped all

medication.....my rheumy wasn't happy. He is against anything that

isn't the traditional way.

Anyway, I lost weight and ate healthier, started taking good vitamins,

fish oil (I keep in the fridge), and Vit. D3. Did pretty good, but my

CPK numbers started creeping back up late last summer and I've been

getting steadily weaker, and on New Year's Day I went back on

prednisone. I'm hoping I can get my numbers down with just prednisone

and not go back on the other nasty meds....though my rheumy says I need

both to make them come down.

Once I get my numbers down, I am going to try the Antibiotic Protocol.

I have looked into it for years, and should have started it last summer

when my numbers were just starting to go up but weren't too high yet. I

have been going to a naturopath for over a year, but we've not been able

to keep my CPKs from rising. I recently added in physician's strength

oregano oil for inflammation and it took away the pain I had in my hands

recently, but I haven't felt any gain in strength yet.

There is a DM list, , but I seem to get more info from this

Rheumatic list.

Anyway, welcome aboard....though I'm sorry you have DM. This is a great

place of support.

Have a SONshiney day! --Celia <><

--

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Celia L. Hartmann

Dust if you must, but there's not much time,

with rivers to swim and mountains to climb,

music to hear and books to read,

friends to cherish and life to lead.