dermatomyositis

[Guest guest]

,

Run don't walk to your nearest health store. Buy Hulda s book, "Curing Cancer".

One for yourseld and one for your friend. If you are bonded with this friend, you may well save the life of this person, as he/she knows it to be today.

My daughter has dermatomyositis,for nine years we have been battling this horrible disease.It has rendered us to poverty.It has taken her beautiful body.

She is now an invalid. At 15 years of age.

Her life/body, could have been spared had we known about PARASITES!

Predinsone, Methotrexate, IGIV,Plaqunil,...ALL failed her. All the proof we needed to pin point this is in Hulda s book.

I know what lies ahead,for you and your friend.

My heart is greiving for you and your friend,

lrcrigger@... wrote:

Hello, My name is and I have been on this list for some time. I am always a lurker...just reading and learning. However, a situation has came up that I need some advice with. A friend of mine was recently diagnosed with dermatomyosiitis. Basically, her symptoms now are a face rash....similiar to a lupus butterfly rash... and joint/muscle pain. The information on the internet is scary and sounds like something very similar to lupus and all of the other auto immune diseases. Does anyone have any experience with these sort of diseases and have suggestions on things to try? Of course, the MD's first choice of treatment is prednisone and even chemotherapy drugs. That is something she does not want to do! Any help would be appreciated. Thank you, Subscription email: mailto:bowel cleanse-subscribe

[Guest guest]

Get Dr. Weils' book "Natural Health, Natural Medicine", and also Dr. Fuhrman's book "Fasting and Eating for Health." Both books offer excellent advice for treating and possibly curing this disease and other diseases. Total cost will run you about $15 for each book--a heck of alot cheaper than those toxic drugs and all the doctor visits will cost.

Patty

dermatomyositis

Hello, My name is and I have been on this list for some time. I am always a lurker...just reading and learning. However, a situation has came up that I need some advice with. A friend of mine was recently diagnosed with dermatomyosiitis. Basically, her symptoms now are a face rash....similiar to a lupus butterfly rash... and joint/muscle pain. The information on the internet is scary and sounds like something very similar to lupus and all of the other auto immune diseases. Does anyone have any experience with these sort of diseases and have suggestions on things to try? Of course, the MD's first choice of treatment is prednisone and even chemotherapy drugs. That is something she does not want to do! Any help would be appreciated. Thank you, Subscription email: mailto:bowel cleanse-subscribe

[Guest guest]

I have DM  - dx in Feb - muscle involvement about a month ago - I live in Denver

and have found a wonderful doc - will write more later when have more time. 

Sorry, you have this. 

 

Char

From: bebyhyzk4 <bebyhyzk4@...>

Subject: rheumatic Dermatomyositis

rheumatic

Date: Wednesday, October 28, 2009, 1:40 AM

 

I am new here! How many of you have this terrible disease? I am currently taking

Methotrexate and Prednisone 20mg. I want to start the antibiotic treatment. I'd

love to hear from anyone!hehe

[Guest guest]

Hi,

 

I wrote to you the other day but didn't have time to expand.  I do now, here's

what I've learned in the 8 months since I was dx w/ DM.

 

I started with a  rash in Dec 09  that got progressively worse and more

prevalent.  Muscles didn't get involved until this summer., but was still

functioning pretty normally, just tired.   I started going down hill pretty fast

in Sept and am very week and limited now.  ( I used to work out 3-5 xs a week

for last 10 years and was very active and in good shape)  Now I can barely do

stretches, can't cook, do laundry, shop, etc..

 

For the first 6 months the only meds I was on were topical steroids for my

skin.  Helped some, but still had the rash and made my skin tear very easily so

took myself off in Sept.

No significant difference w/o it - I now use LOTS of paraben-free lotion, vit E

oil and aquafore as topical relief for my skin. 

 

I refuse to accept the common approach to this disease - just throwing steroids,

immunosuppresants, and other toxic drugs at it to treat symptoms.  I have been

researching alternative and complementary treatments.  It is not easy to find a

doctor to help with this, but I finally did.  He's a DO in Denver where I

live.  

 

I also saw Dr. Franco in Calif who I learned of from another web-site.  He's a

rheumatologist who uses antibiotics.  I think he is smart but I think he's

gotten too big (people come to see him from all over) and the distance proved to

be a problem for me.  He put me on minocin even though I tested negative for

mycoplasams - he says there are still 100s-1000s that they can't test for. 

Anyway, I left feeling that was his rather generic response to everyone and

that he wasn't too interested in finding the CAUSE for my specific condition. 

 

My DO gave me an excellent article that explains possible causes and that's what

we're pursuing.  I can't find the link to send to you, but if you're interested,

I'll have it scanned and send to you.  It discusses several possible causes: 

allergic reaction, exposure to toxic substance or medicine, another disease such

as cancer or rheumatoid conditions, or a virus or other infectious agent (ie:

mycoplasam, lyme, etc). 

 

So currently, b/c I was crashing so fast I am on  40 mg of prednisone and 1000

mg of cellcept. as well as 12 gms of PABA and lots of supplements.  I was on 60

mg of pred for 1 week and we've already reduced to 40 and it's been fine.  We're

doing this to buy time to explore the causes and treat accordingly.   am no

longer on minocin - at least not until we determine if it's indicated.  We

suspect toxicity in my case. 

 

So you'll read that AP is the magic bullet, and I believe it is for some.  But I

think it's more complicated than that.  I think you have to find a doctor who

will take the time to see what's going on with YOU.  My doc has order metal

toxicity labs, nutritional needs labs (not sure what that's called), fatty acids

analysis.  (I also believe nutrition is essential to tx this condition).  We're

also testing for allergies (including food). 

 

there are many wonderful web sites with lots of information.  So read and

educate yourself - try to hook up with people in your area.  here's some web

sites and some of them provide treatment providers who tx with

antibiotics/alternative txs.

 

 

 http://rheumatic.org/index.html - this one includes accounts of other people's

journeys and is very encouraging to see how they've beat this thing...

 

http://www.rheumaticsupport.net/

http://www.roadback.org/

http://www.arthritistrust.org/index2.html

dermatomyositissupport/message/7524 - not

so much about alternative tx - but specific to DM

 

I hope this is helpful to you and wish you the best.  Let me know if you'd like

the article I mentioned and I'll scan for you.

 

Char

From: bebyhyzk4 <bebyhyzk4@...>

Subject: rheumatic Dermatomyositis

rheumatic

Date: Wednesday, October 28, 2009, 1:40 AM

 

I am new here! How many of you have this terrible disease? I am currently taking

Methotrexate and Prednisone 20mg. I want to start the antibiotic treatment. I'd

love to hear from anyone!hehe

[Guest guest]

My wife has DM too,and was diagnosed in the same month as her breast

cancer in JAN2007. She is in remission from breast cancer, and is fast heading

in that direction too with her DM.

In a nutshell here is what has worked(she could barely move) Minocin saved her

life & and its the cornerstone of the antibiotic proticol (as she had heart and

lung involvement in realy/mid2008,but no more).LDN has sped up her rate of

improvement.She will remain on both drugs, as we KNOW they work, despite what

any doctor may say.

Also, physio & mesaage therapy were added in July09 & will continue for up to

two more years of treatments, as these have sped her her muscle strength &

flexibility.

She is been off Pred two months now,but know that both Minocin and LDN do not

work well on high doses of Pred.(above 10 mg/day),and Methotrexate (washout

period is recommended).

-Jim &

>

>

> From: bebyhyzk4 <bebyhyzk4@...>

> Subject: rheumatic Dermatomyositis

> rheumatic

> Date: Wednesday, October 28, 2009, 1:40 AM

>

>

>  

>

>

>

> I am new here! How many of you have this terrible disease? I am currently

taking Methotrexate and Prednisone 20mg. I want to start the antibiotic

treatment. I'd love to hear from anyone!hehe

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

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. I am from Calgary, AB as well. Has been diagnosed with RA for almost 2, 5

years. Tried different naturopatic doctors and nothing really worked for me. Was

a patient of Rhematologist and stoped going there because all they do is giving

you more meds. Found a great doctor in Calgary - his name is Dr.

(tel# 403-202-0724), he has been prescribing me Minocin and other natural

medications or supplements. I have improved significally and almost close to

remission. Believe me, i have spent so much money and time before i found a real

help from this Doctor. Your insurance won't cover his services but it worth it.

Suzan

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]

I have been taking Fish Oil daily, Vitamin D, Vitamin B injections every week,

also some natural thyroid pills.

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]

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.

[Guest guest]

Take Krill Oil instead of fish oil. The krill are at the bottom of the food

chain so are not as likely to be contaminated with mercury, etc.

carol_DM

[Guest guest]

Thank you!  Will go to the health food store tomorrow to look for Krill Oil. 

I have never seen it in any regular store.  Is it an oil or a capsule and if a

capsule,how many do I take a day and how often.  If it is oil, then, I guess I

take it by the spoonful.  I remember taking cod liver oil as a child.I love

this site.  Dolores & Mike 

From: Bob & Carol Zarn <bczarn@...>

Subject: rheumatic Re: dermatomyositis

rheumatic

Date: Wednesday, January 26, 2011, 12:39 AM

 

Take Krill Oil instead of fish oil. The krill are at the bottom of the food

chain so are not as likely to be contaminated with mercury, etc.

carol_DM

[Guest guest]

Unfortunately for people like me, an allergy to shrimp makes krill oil

impossible. I do find fish oil helpful, though.

rheumatic Re: dermatomyositis

Take Krill Oil instead of fish oil. The krill are at the bottom of the food

chain so are not as likely to be contaminated with mercury, etc.

carol_DM

[Guest guest]

Dr. Mercacola has good krill oil. Perhaps they mail to PR? It is a capsule. I

think I doubled the dosage on bottle. sally

rheumatic Re: dermatomyositis

rheumatic

Date: Wednesday, January 26, 2011, 12:39 AM

Take Krill Oil instead of fish oil. The krill are at the bottom of the food

chain so are not as likely to be contaminated with mercury, etc.

carol_DM

[Guest guest]

I get a Krill product from Vitacost (and I think Mercola is associated with

them now?) It's a Food Science of Vermont brand of 60 softgel caps for

24.40. El

_____

From: rheumatic [mailto:rheumatic ] On Behalf

Of mannasal@...

Sent: Wednesday, January 26, 2011 1:23 PM

rheumatic

Subject: Re: rheumatic Re: dermatomyositis

Dr. Mercacola has good krill oil. Perhaps they mail to PR? It is a capsule.

I think I doubled the dosage on bottle. sally

rheumatic Re: dermatomyositis

rheumatic <mailto:rheumatic%40>

Date: Wednesday, January 26, 2011, 12:39 AM

Take Krill Oil instead of fish oil. The krill are at the bottom of the food

chain so are not as likely to be contaminated with mercury, etc.

carol_DM

[Guest guest]

Thanks, will go to the Dr. Mercola site and order the krill oil!  My best to

you all, dolores & Mike

From: Bob & Carol Zarn <bczarn@... <mailto:bczarn%40xplornet.com> >

Subject: rheumatic Re: dermatomyositis

rheumatic <mailto:rheumatic%40>

Date: Wednesday, January 26, 2011, 12:39 AM

Take Krill Oil instead of fish oil. The krill are at the bottom of the food

chain so are not as likely to be contaminated with mercury, etc.

carol_DM

[Guest guest]

I just got my lab results today and I always have high Eosinophils.  So, I am a

person with allergic tendencies myslf.  But I don't know to what.  Maybe I

should see an allergist who could tell me what I should stay away from. 

Dolores & Mike

From: Ken and <kglg@...>

Subject: Re: rheumatic Re: dermatomyositis

rheumatic

Date: Wednesday, January 26, 2011, 9:47 AM

 

Unfortunately for people like me, an allergy to shrimp makes krill oil

impossible. I do find fish oil helpful, though.

rheumatic Re: dermatomyositis

Take Krill Oil instead of fish oil. The krill are at the bottom of the food

chain so are not as likely to be contaminated with mercury, etc.

carol_DM

[Guest guest]

And that is one of the problems with AP, developing leaky gut. You kill off the

mycoplasma and are left with a less than optimal intestional health. I just had

a live cell blood test today and was told that my digestive health is horrible.

I haven't taken antibiotics in years. I react to most everything I eat. Some

days I don't feel like eating at all. And I can't do that.

What to do, what to do.

But you are right , the minocin does cause digestive problems that can lead

to allergies.

Suzanne

>

>

> From: Ken and <kglg@...>

> Subject: Re: rheumatic Re: dermatomyositis

> rheumatic

> Date: Wednesday, January 26, 2011, 9:47 AM

>

>

>

>

>

>

> Unfortunately for people like me, an allergy to shrimp makes krill oil

> impossible. I do find fish oil helpful, though.

>

>

> rheumatic Re: dermatomyositis

>

> Take Krill Oil instead of fish oil. The krill are at the bottom of the food

> chain so are not as likely to be contaminated with mercury, etc.

> carol_DM

>

>

[Guest guest]

Hi all,

there is a product called Tyler Permeability Factors which works quite well to

correct leaky gut problems. Taking digestive enzymes and betaineHCL and aloe

vera gel and lots of probiotics helps with the digestion. Just be sure that you

take these products a minimum of 2 hours before or after eating.

hth,

carol_DM

[Guest guest]

Carol, are your getting those from DeWet? I get sloppy on my enzymes but never

my aloe vera or probiotics even though I am considered remission. Then I get a

few symptoms and remind myself to get back on those enzymes. Hope you are doing

well. It has been many years since I saw you. Fain

rheumatic Re: dermatomyositis

Hi all,

there is a product called Tyler Permeability Factors which works quite well to

correct leaky gut problems. Taking digestive enzymes and betaineHCL and aloe

vera gel and lots of probiotics helps with the digestion. Just be sure that you

take these products a minimum of 2 hours before or after eating.

hth,

carol_DM

[Guest guest]

,

I live in Manitoba Canada. You may have me mixed up with another Carol on here.

I am doing well.

Carol_DM