Re: Wegener's Granulomatosis

[Guest guest]

Hello All,

I just wanted to ask a question to the community here regarding

Wegener's Granulomatosis and LDN. A very good friend of mine has

Wegener's Granulomatosis and he is taking steriods to keep the disease

at bay. Sometimes, he has flareups and is given high dosage of

prednisone to get his symptoms to subside.

I want to know if someone in this forum is using LDN for Wegener's

Granulomatosis disease. And if someone is or has knowledge in this

matter, then how are they doing with the medication and their overall

experience.

Thanks,

Jess

[Guest guest]

>

> Hello All,

>

> I just wanted to ask a question to the community here regarding

> Wegener's Granulomatosis and LDN. A very good friend of mine has

> Wegener's Granulomatosis and he is taking steriods to keep the disease

> at bay. Sometimes, he has flareups and is given high dosage of

> prednisone to get his symptoms to subside.

>

> I want to know if someone in this forum is using LDN for Wegener's

> Granulomatosis disease. And if someone is or has knowledge in this

> matter, then how are they doing with the medication and their overall

> experience.

>

> Thanks,

> Jess

>

======

In the 3 years I've been on this forum WG is an illness no one has asked about

or presented with. Have you and your friend read the LDN website? WG is

autoimmune so LDN should help stop or slow the disease progression.

LDN website

http://www.ldninfo.org

[Guest guest]

Me and my friend have read the LDN website. WG is an autoimmune

disease but we wanted to know if someone is using LDN for WG or has any

knowledge in LDN being used for WG. Thanks

[Guest guest]

A friend of mine had a son who had WG and went through all kinds of

terrible things before normalizing again. At the time we didn't

know about LDN, but we're watching him closely - if he shows any

signs of it coming back we're going to get him on LDN! Here is an

excerpt from the LDN website (sorry so long)...

Wegener's Granulomatosis: D. is a 62-year-old male. In February

2000, after 3 years of recurrent upper respiratory symptoms and

cough, and more recent difficulty with vision, he was admitted to a

Boston medical center because of suspected vasculitis. He had lost

energy and could not walk more than ten to fifteen steps without

having to rest. The autoimmune disease Wegener's granulomatosis was

considered probable, due to an elevated sedimentation rate (80) and

a positive Anti-Neutrophil Cytoplasmic Antibody [ANCA] level of 65.

In May 2000, nasal tissue removed at surgery showed " necrotizing

vasculitis & #133; highly suggestive of Wegener's granulomatosis. " He

was

treated with corticosteroids for nine months, until January 2001.

The ANCA test was 1.9 in July 2000, 12 in January 2001 and back up

to 40 in May 2001.

D. started using low dose naltrexone (4.5mg) nightly in mid-May

2001. After several weeks he noticed a decrease in congestion and a

noticeable increase in overall energy. Subsequent tests of ANCA were

16 in August 2001 and a recent test of ANCA in late December 2001

was 1.0. The patient reports a high energy level equal to that of

several years back, and is enjoying a noticeable improvement in

overall health.

LDN is inexpensive and has few if any side effects. I can't imagine

not trying it first thing! Best of luck!

[Guest guest]

Beach,

Thank you.

Wanda

Anyone else out there have any info. on Wegener's and LDN?

-------------- Original message -------------- From: "beach980too" <beach980@...>

A friend of mine had a son who had WG and went through all kinds of terrible things before normalizing again. At the time we didn't know about LDN, but we're watching him closely - if he shows any signs of it coming back we're going to get him on LDN! Here is an excerpt from the LDN website (sorry so long)...Wegener's Granulomatosis: D. is a 62-year-old male. In February 2000, after 3 years of recurrent upper respiratory symptoms and cough, and more recent difficulty with vision, he was admitted to a Boston medical center because of suspected vasculitis. He had lost energy and could not walk more than ten to fifteen steps without having to rest. The autoimmune disease Wegener's granulomatosis was considered probable, due to an elevated sedimentation rate (80) and a positive Anti-Neutrophil Cytoplasmic Antibody [ANCA] level of 65. In May 2000, nasal tissue removed at surgery showed "necrotizing vasculitis & #133; high

ly suggestive of Wegener's granulomatosis." He was treated with corticosteroids for nine months, until January 2001. The ANCA test was 1.9 in July 2000, 12 in January 2001 and back up to 40 in May 2001.D. started using low dose naltrexone (4.5mg) nightly in mid-May 2001. After several weeks he noticed a decrease in congestion and a noticeable increase in overall energy. Subsequent tests of ANCA were 16 in August 2001 and a recent test of ANCA in late December 2001 was 1.0. The patient reports a high energy level equal to that of several years back, and is enjoying a noticeable improvement in overall health.LDN is inexpensive and has few if any side effects. I can't imagine not trying it first thing! Best of luck!