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MBL deficiency


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#1 Margaret

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Posted 28 May 2009 - 11:46 AM

Hi Everyone,

Three weeks ago, I found out from Gareth's Immunologist that he has MBL deficiency --- Mannose-binding Lectin deficiency. From what I have been reading these past few weeks, it explains his chronic/severe infections. Gareth is on his third antibiotic for a simple ear infection from two weeks ago.

One line that keeps coming up in all articles is that specific complement deficiencies (like MBL) are also associated with an increased risk of developing autoimmune diseases, such as SLE. I would like to warn everyone that IF you have a history of infections, have an autoimmune disease, etc, to have your doctor check this out. It's a fairly new field, I guess, and G's doctor is still checking out what to do about it. She said something about prophylactic antibiotics or IV infusions each month. If you google MBL deficiency, lots of reading comes up.

Take care, Everyone.
Margaret

#2 Shelley Ensz

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Posted 29 May 2009 - 01:17 AM

Hi Margaret,

This is very interesting. I'm sorry Gareth has MBL deficiency but it does help explain a lot of things, doesn't it?

Our news team will be looking into this more and adding some information on this to the main site this month as this seems to be an emerging topic, both MBL deficiency and MBL antibodies, in a few autoimmune diseases; and it predisposes to infections and sepsis.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 Margaret

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Posted 29 May 2009 - 11:59 AM

Hi Shelley ,

I got a call today from his Immunologist's office and she is starting him on a daily dose of Amoxicillin (500 mg) to be taken 'forever.' I have always heard that giving prophylaxis antibiotics isn't a good thing, but in his situation, it's the way to go. Like you mentioned, it is the sepsis that is the real danger.

Take care, Everyone.
Margaret