Re: Hello-- I'm new here--msg for Fran

[Guest guest]

Dear Fran,

My heart just breaks to hear what you went through. I was

misdiagnosed with phelbitis before I was correctly diagnosed with

EN....5 years later. I have never taken any prescription drugs for EN.

I've had it for 35 years--in and out of remission. Many in my EN Group

take prednisone. I did not know it could do that kind of

damage--although some members seem to feel it is the only thing left

for them to take. If you would like to tell my group your experience,

you may join us at:

erythema nodosum/

I do feel people need to hear first hand how dangerous prednisone is.

I am in touch with a medical researcher working with sarcoidosis,

a disorder which often presents with EN. He sent me an advance copy of

his latest paper which is very promising. I have made contacts and

friends with people in many autoimmune communities. I feel they are

all related and that when one is cured they all will fall like dominoes.

Best wishes to you and Glenn. Try and keep a positive attitude. I

pray that we will see wonderful results from the LDN researchers and

that it will benefit us all.

Love,

> Hi ,

> Though my husband is the one inquiring about the LDN, I was

diagnosed with EN in 93, EN is Latin for red bumps, mine ended up

being blood clots. A " doctor " put me on prednisone which acted like

draino in my veins, causing the loss of my right leg below the knee,

left above the knee and my right index finger. DO NOT believe

everything a doctor tells you, and never be afraid to tell them NO.

>

> Fran

> ----- Original Message -----

> From: Strecker

> low dose naltrexone

> Sent: Monday, March 01, 2004 5:13 PM

> Subject: [low dose naltrexone] Hello-- I'm new here

>

>

> I just found out about LDN yesterday and joined the group today. I

> have a condition called " erythema nodosum " and am moderator of an EN

> Group on :

>

> http://heal

th./group/erythema nodosum/

>

> I also have a webpage for those who are unfamiliar with EN:

>

> http://www.geocities.com/erythema_nodosum/Home_Page.html

>

> I am interested in the effects of LDN on autoimmune disorders. EN

> often presents with Crohn's and sarcoidosis, but is just as often

> idiopathic where no underlying trigger or concurrent disorder is

> discovered. I am one of those idiopathic types.

>

> I have posted the link to this group on my EN Group, and have told

> them of the Crohn's Trial. I am hoping that the LDN treatment will

> help those with EN, and am looking forward to getting updates to see

> how the research is going. I will pass on info. to my EN Group. I wish

> you all the best.

>

>

>

>

>

>

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