I dont have a complement, but I know a friend who is getting tested for one. He said the only treatment is prophlaxis antibotics.

Have you any idea what anti-biotic brands would help? I agree that the IVIG alone will not fill the gap, I am plagued by infection. I only have an injection of Clindamycin once a week but it barely touches the symptoms, it used to work, I have had it too long on too low a dose. I would really value any help with idea's. Bless you So much. I hope all is well for you.

I am not sure which antibotics woudl help. I wish I could be of more help.

What complement disorder do you have?

I have a C1q deficiency. I have gone from doctor to doctor seeing rheumatologists and immunologists to try to get help for this but no one seems to know very much about it. I am happy to have a name for this terrible thing but I am desperate to find others with this rare deficiency.

My c1q binding numbers are too high and my c1q quantitative numbers are too low. I present with what they are calling hypocomplementemic urticarial vasculitis. I wake up covered from head to toe in hives. My tongue and lips swell and my throat starts to swell closed. I go to the ER where I am given extremely high doses of steroids over several days. It works but I am looking for a specialist in the complement system in particular who can give me more options.

The rheumatologists and immunologists I have seen have done all they can and we have tried countless medicines but none of them know enough about the complement system to go any further.

Oh, I am so sorry more than any one I know how bad this can get, it has nearly killed me on many occasions. Please, what are you symptoms? I have been getting everything under the sun, including a failed digestive tract and neurological damage to the brain stem, even a partial stroke and suspected mini strokes. I am at a loss too. I am on IVIG but it seems to help so much but not fully. I am also wishing to find a complement specialist. Please let us share ideas I hope we can find eventual relief. my prayers are with you, Amber.

Wow you guys. I had never heard of this before. I don't believe that I have it, but I just wanted to let you know that I care. My heart breaks for you. All of the other things are bad enough, but these symptoms sound horrific.
I will ask my immunlogist next week when I have my infusion if he knows anything about this. He is supposed to be the 'expert' in all of Texas. One never knows where the information can come from. In the meantime I hope you will stay well.

THANK YOU! I would travel to Texas in a second to see if there was hope. I am sure we both would, thank you for caring, it means a great deal be blessed for your good works. :)

I am going to see my brilliant immunologist on Thursday for my infusion. I will take my computer along and hopefully not forget any questions. I want him to see our site and glance through some of our stories. I figure it's worth a try.
I am sooooo ready for my infusion. My level must be way down. I have a deadly sore throat and occasional temp., along with bones and joints that feel like they belong to an old mummy. My eyes feel flushed all the time(do any of you get that?). Basically feel like crappola and a mess. I know you understand.
I will post as soon as I get some feedback from my doc. Just promise me you won't feel disappointed if he doesn't come through. By now, I figure we are all used to having some disappointment with our doctors.
In the meantime, love and happiness. This disease has softened my heart and opened it wide up to connecting with others and genuine feelings. I think of you all as family now. God bless.

EXACTLY! All of those symptoms to endure, this is my third week and I feel bad but then I still am not getting enough I can sense it. Please let me know how you get on with the DR. Thank you for caring. Wishing you wellness. Amber

Hey guys. My doctor was not there on Thursday for my infusion. "A Family crisis". How utterly disappointing. My nurse, whom I adore fortunately, took all my questions and promises to pass them along to DR. and call me this week. Nonetheless I felt very let down. 2 days before my infustion I became VERY sick again. I would have gone to the hospital but I discovered that I still had a refill on my Cipro and a full bottle of Amoxocyllan (forgive spelling). So, between those and pain meds. I made it to Thursday and my infusion. I was so sick and in so much pain. It was terrible.
Antibiotics started to turn things around in about 10 hours. I went from hospital material on Wednesday to back to half day of work on Friday. Thank God for the pills.
Friday afternoon it just so happened that I had an appointment with my urologist. Naturally by that time my urine was perfect so he was unimpressed with my story. He just blamed all the pain on my interstitial cystitis. "See you in 6 months. If you get another infection just drop off a sample. Goodbye". Basically no help.
I am still on a daily dose of macrobid to keep urine steril but that does not seem to be enough.
My biggest frustration is really who to look to for relief from all of these mysterious pelvic infections and issues. It is so endlessly frustrating.
I could go on, but I won't. I know that you all have long stories too. I have searched the internet and found some good information, but it mostly seems like none of the drs. including my immunologist 'get it' when it comes to unusual symptoms, i.e. abdominal problems, deep bone pain and stiffness, fatigue and flu like issues. They all seem to be geared to the respiratory patients. It's almost like you can feel them thinking that you are being a baby, or you are exaggerating. Lord, it is tiring.
Sorry I have nothing new to pass along, but I will keep fighting to get more info. Thank you all for being there... without these boards I don't know who I would be talking to.. surely no one. CVID is a difficult thing isn't it...
Love and good wishes to you all and thank you for allowing my vent.

Fezzywig, ANYTIME YOU NEED TO VENT WE ARE HERE TO LISTEN. Sometimes just venting relieves the pent up frustration. I can certainly empathize with you, it's a daily struggle of knowing your body and whats going on, and what to take serious and what not to. I SNAPPED last week trying to get my MediCAL reinstated, looking for all the documents I needed to present and couldn't find, I ripped the house apart practically and just cryed and felt sorry for myself. I am fortunate in the fact I only get upper respitory infections, do you have Epstein Barr Syndrome? If so what is the treatment for it? You know it is an excellent idea to print off all these blogs on this site and present them to an immunologist that takes this disorder seriously, maybe is researching it. Maybe if these doctors saw a collective order of people complaining of similar issues t hey would take us more seriously. Right now I only have a sinus infection, and then my eyes became infected yesterday, luckily I have some old antibiotics hanging around, so I am popping them. Waiting for doctor to call me back, they said they would call me back 3 days ago, still haven't heard. Oh well. hang in there, I REALLY ADMIRE YOUR STRENGTH AND SELF SUFFICIENCY. Praying for everyone's good health!

It sounds like a Fezzy and GreenGirl could have Celiac Disease(CD).
Many of these people have bone pain, digestive issues, tingling, numbness, burning or stabbing pain in feet and/or hands, rashes, feel wiped out, nausea, dysentery,some are incorrectly diagnosed with IBS and a lowered immune system. Often there are other autoimmune disorders with CD.

I did not have all of these symptoms.
I was incorrectly diagnosed with IBS.
My asthma was not under control and I was on 5 drugs to contain it.
I am still on Protonix twice daily for Acid reflux and also sometimes take carafate because the protonix is not always enough even though most people only take the protonix once daily.

Anyway, now that I am gluten, dairy free and Carrageenan free, the asthma is under control, the dysentery is under control and the severe esphigial spasms have stopped.

My eyes still run and the acid in my esophigus is not under control.

I also have a uteral palop that must be removed.

I also have hypothyroid.

I have so many diagnosises that it's just stupid.

If any of you are taking steroids frequently, it may be wise to be treated as though you have Osteoperosis. I am being treated with Boniva and calcium, magnesium and Vit. D to prevent Osteoperosis. I've had steroids on and off for so many years that it's important I do this so my spine and other bones do not deteriate.

I also had chronic fungal infections that were very severe.
At one time I was systemic with the candida.

Anyway, it sounds like we all have a lot to cope with and I'm glad for those of you who have good marriages, strong family help and support.

My mother helps me and supports me.
I am afraid a lot!
I'm afraid because my mother is almost 80 years old and when she is gone, I'll not have anyone to help me.

I forgot to mention that it's super important to take a lot of probiotics if you must be on antibiotics frequently or all of the time.

The antibiotics surely kill the infectious bugs and they kill the good bugs in you stomach and intestines. This will make you sicker and lower your resistance to infection.

You are correct in many ways. I have had Celiac ruled out but my Dr is convinced a major part of my problem is in the gut. I have had a immune type crohns diagnosed, tropical sprue and more. I get every gut bug there is to get and I mean everything. I barely eat and my weight is low 94 lbs at 5ft 6in but this is actually a good weight for me. I really do not like the intrusive test for the gut, such as endoscopy and the like. They tend to tear my gut lining and that can be very scary. I bleed internally too, quite spontaneously.

I stopped my steroids a few months ago, I was worried about them increasing infection and also the fact they weaken bones, I was attacked in 08 and my hip was broken it made me rethink those.

Anyway, I am lost. I think the Compliment def is the major concern, yet IVIG only helps so far, is there nothing else? My Dr thinks I have an auto-immune causing it I this the reverse, they both makes sense.

I REALLY vlaue your emails, this helps to have support more than you could know.

P.S I know about the FEAR. It is AWFUL to feel alone as very few understand the illness. I am praying for you and you always have us here.