I have low C1 Esterese Inhibitor Serum, along with low C3 and C4. I am having trouble finding info. on what a low C1 means.
I did find some articles that say it will result in edema. I have TONS of horrible edema, so that made sense to me. I haven't been able to find out more, and would really like to know more.
Do any of you have these levels that are low? What does it mean? How do they get raised?
Any information is welcome, as I am really lost on this one and need some help!! Doctors keep ignoring these levels and are just now paying attention. I have been sick for years and believe this is the big clue, into what is going on other than lyme.
Thanks everybody!
Posted by blackbirdsings (Member # 7972) on :
Bump!
Posted by iceskater (Member # 8655) on :
Blackbird:Glad to see you back. I willl try to look it up for you! when I find info, will send it to you.
Posted by blackbirdsings (Member # 7972) on :
Thank you Iceskater!! I assume it's not too common for this level to be off, since more people haven't answered. Something else on top of the lyme, uggghhhh...
Posted by sunnyslumber (Member # 7065) on :
Can they do genetic testing for that? I think they might be able to. Does your throat swell up sometimes? That could be a sign of hereditary angionecrotic edema ... according to my dumbed down undergradute immunology text. The C1-INB also inhibits the clotting cascade and the kinin system (unfamiliar with this one). Since your C3 and C4 is low the complement system of your body is probaby activated at abnormally high rates (thus depleting the components C3 and C4). I think this could cause systemic inflammation and make bacteria less easy to clear (due to less complement). Do you get a lot of bacterial infections of the sinuses, bronchi etc?
Are there any clotting disorders such as stroke or heart attack, or embolism, in your family?
"Symptoms of hypercoagulation disorders include swelling [edema] or discoloration of the limbs, pain or tenderness of the skin, visible obstructions in the surface veins, and ulcers of the lower parts of the legs."
Also you could have redness caused by phlebitis/inflammation of deep or superficial veins...
The next two webpages I found mention severe abdominal pain as a symptom as well.
I found an article on pubmed that mentions some treatments:
"Angioedema attacks might be prevented by administration of androgenic steroids, such as danazol.5 However, this agent is sometimes not well tolerated by women, apart from its adverse effects on blood lipids and the risk of liver tumors on long-term use.6, 7 and 8 Alternatively, administration of lysine analogues, such as var epsilon aminocaproic acid or tranexamic acid, is in some, although not all, patients effective as a preventive strategy or in case of an (imminent) angioedema attack.9 and 10 The most rational form of treatment, however, is administration of C1-inhibitor. Purified concentrates of C1-inhibitor derived from human plasma have been available for many years, are licensed in Europe and under study in the United States, and have shown to be effective in the treatment of severe angioedema attacks in patients with hereditary and acquired C1-inhibitor deficiency.1"
Also an found an emedicine article on hereditary angioedema that includes a lot of information on C1 Esterase Inhibitor Deficiency and its treatment.
Not sure how helpful that will all be to you, but if you think there is even a slim chance it's something hereditary i would think it would be a good idea to see a dr., especially a university dr, that specializes in disorders of the blood system (hematology i believe).