thanks pconville...I appreciate the information and suggest as this is all new too me. So I was looking at my lap report and back in Oct 2010 my SEDIMENTATION RATE AUTOMATED 21 this is high I guess. That is what it says 0-19 is normal. It is flag but no one said anything about it or did anything. Well I am going to follow up with the doctor on this. Thanks.

I look up SED was done on 12/22 this was 4 wait I am confused is SED the same as SEDIMENTATION RATE AUTOMATED I look up SEDIMENTATION RATE AUTOMATED and the webmd said some doctors use c-reactive protein test and that was just done 12/22 and my c-reactive protein was .1....so I don't know...anything anymore...

not sure and different labs may have different markers....my lab norms are 0-20 are within norm.....my sed rates are between 40-101 for the last several yrs....this past yr they havent been below 70 until nov they finally dropped to 21 but i suspect they are back up again i have a call into my rhuemo doc and will have her run labs again this week to see what my numbers are if they are high again....she will need to adjust my meds....
by now i can feel when the levels are high....she says i cant have sed rates over 100 it is too dangerous...i havent asked why it is....i just decided i didnt really want to know and i havent looked it up...i figured it would just worry me and so i have decided to stay in the dark and let her do the worrying......

do you have any other illness going on other then CVID or is the SED rate high because of CVID?

no additional dx except to say i have inflammatory disease....i really think it is related to cvid since i have struggled with inflammation my whole life and my daughter with cvid struggles with inflammation also....for years before our dx we were both thought to have lupus (my aunt has lupus and mom has RA) but test came back neg (we now know it was because of the cvid)....i have no other dx ....sjorgens has been tossed around for the last few yrs....but nothing is on record except for cvid.....it is thought that my immune system is just screwed up and it both attacks itself and doesnt attack the germs.....just a faulty immune system because of the cvid.....with inflammatory disease it allows for the addition of immune suppressing drugs that would not normally be used to treat a person with cvid...it is a balancing act to not suppress the immune system too much but enough to keep the inflammation levels down enough .....out of the danger zone #s.....if that makes sense....it has taken a LOT of doc visits and LOTS of communication between my immune doc, hemo doc, rheumo doc, ent, and internist to get to this point....the main goal we have is improving my quality of life for as long as possible......i was in pretty bad shape and they have gotten me back to a place that i am able to have improved quality of life......
BUT it has been a long 2 yrs it isnt an overnight thing.....patience is key when dealing with cvid and the many complex issues that go along with it....and i can not stress enough you have to have a team of docs that communicate and are willing to think outside the box....it is like i tell my internists on a regular basis...i am the perfect patient he gets to experiment and think outside the box because at this point there really isnt any way he could break me...my immune system is shot...i am a walking experiment on trying to improve my quality of life for as life as possible....but even he isnt comfortable at times and he sends in the other specialists to make sure they are doing all they can.......for instance he sent me to the lung doc 2 wks ago so we could be told there isnt anything that can be done for my left lung other than what we are doing...now my internist feels better that he isnt doing more harm than good and he will probably send me out in another yr just to make sure....i joke with him about it now and we both know there isnt anything that can be done...but he still ilkes to know that he isnt doing more harm than good.....
so long answer but for me ...i think it is all cvid related...when your immune system is screwed up it does a number on your body....

you know what is interesting is that my body responds to all the vaccinations and they still say I have CVID- but this other hospital I go to say I don't have CVID- I've been check for lupus and Behcet's disease- I don't know what is going on all I know is my labs are low some consistently and others just randomly. I also do know how I feel which is awful. Fever all the time, ear, sinus, lung infections, lymph node infections, stomach infections all time time- constantly on antibiotics and steroids. Feeling week, back aches, horrible headaches worse then before, night sweats, hot flashes could be related to fever, muscles aches.pains, lymph nodes swollen and in pain. Cough, chronic drainage oh and I am gaining so much weight and I hardly eat because I have horrible nausea and vomiting ....anyway sorry for all that info do you ever get frustrated or did you ever before they figure out what was wrong?

yep i was so frustrated because i knew something was wrong and so many docs just gave up and decided it was depression.....i finally kept going and insisted it was more than depression...i wasnt depressed i was sick....
even after getting a dx but having docs that couldnt handle cvid was frustrating....it has taken me almost 2yrs to get a team of docs that work together and get it....
it is frustrating that ......even with treatment i will probably never work again...it is frustrasting that some days are spent sleeping all day...it was VERY frustrating...BUT i concentrate on what i can do and try VERY hard not to think about what i can't do.....i am much better than i was this time last yr and 2 yrs ago this time i couldnt even walk without help...so i look at what i can do and try real hard not to worry about what ifs.....

What a road we all have to travel! I see my specialist next week, plus I am going to one of the top clinics for CVID in Europe on Feb 7, so I am going to ask them about this. I have a high pain threshold and since the only thing (!) wrong with me is CVID, I have to believe that there is something they can do for it. I started on SubQ last week, just a trial mini dose of 5mL; they are upping it by 5 mL increments every week until I hit the full dose. If my back pain goes away then I will know I can blame the CVID. Otherwise I will push hard for some answers, because this just cannot be normal!

Have a great day everyone and hang in there!

lightlanes- keep us updated....and good luck at your appointments.

Thanks everyone....back to see the doctor tomorrow and will try to see if I can fit this question in.