Common Variable Immunodeficiency Support Group
Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.
Hi I'm Misty from Michigan. It's strange for me to be on here though I've been reading from this sight for weeks. Such a good positive support group. Last year I had pertussis and since then I've had a sinus infection that I was blaming on "bad allergies". Finishing up my 5th antibiotic and 3rd steroid script not to mention I had sinus surgery last week. The infection that won't stop infecting-staph. Last year when I had the pertussis the hospital made a mistake and checked my IGG (323) and IGM (32). My doctor didn't seem overly concerned and when I went to an allergist he advised to put on back burner. So here I am, almost 1 year later battling a 7 month long sinus infection that hasn't responded to any antibiotics. Praying the surgery and this last super strong antibiotic will do the trick. Saw an allergist today that specializes in immune issues and he told me right away that with my low Igg and Igm plus my stubborn infection that I have CVID (also had pneumonia last year and cellulitis in the past). He sent me for more recent blood work and starting immunization teters and I will do the vaccination challenge in a couple weeks. He thinks regardless of the challenge that I have CVID and they will approach my insurance for subq treatments. This all makes me crazy nervous because I've spent years feeling well and running half marathons with friends. I've lived a super good active life. It seems like this last year has been the turning point starting with the pertussis. My other worry is my 10 year old son who is a great athlete and I love more than life itself. I pray he doesn't have this disease as treatments would be so hard on a kid. I can't even fathom it. Thankfully he's healthy now and my immunologist advises they do not test kids unless they are showing symptoms. I've cried for days. I just knew that something was misfiring when the sinus infection raged on through antibiotic after antibiotic. It may take months to get all of the results together and work with my insurance. I've read so much bad about the treatment risks. I'm pretty scared. It may take awhile to process all of this. Prayers requested that my son remains healthy and doesn't have to worry about this. Thank you:)
deleted_user
Greetings Misty from Michigan. I'm Susan from Texas formerly from Michigan. I'm really a true Michigander so I consider you a sister. I'm sorry to hear about your 'new' health problems, but try to think of everything that has happened to you lately as a blessing. The 'blessing' part is knowing now what you are dealing with. I'm a couple decades older than you and did not get officially diagnosed until just about 10 years ago, in my late 50's. I would love to share my stories with you, but it would take pages and hours. I do recommend that you begin to educate yourself via internet, periodicals and finding like minded people and doctors wherever you can. I would say 'books' also, but true information about CVID and many primary immune disorders, is so scarce and new that most of the little of the info found in medical books is probably wrong. Dig in as much as you can because right now, you are probably going to be your best advocate. Hey, I see that you are from Marysville. We have a family lake house between Pt. Huron and Lexington right up the road from you. You should look and see if there might be any support groups in the area. I do know that William Beaumont Hospital in Royal Oak has a good department and some good doctors. Check and see if they have a group or can steer you somewhere. Eventually, you will need to put together some doctors, i.e. immunologist, endocrinologist. rheumatologist, etc., etc. Don't let it scare you... they will be your allies for life. I hope I haven't gone on too long, but honestly the best advice I can give at this point is to just gather as much info as you can, and continue to watch and participate in these forums. I hope you get to feeling better soon and most of all I hope you find the right doctor to get you started.
mistycarmichael
Hi Susan formally from Michigan:) thanks for your support. Yes, I am right by your summer house. I love being by the water. My new immunologist is in Troy and affiliated with Baumont. My doctor gave me the name of a woman that does a lot of work with CVID, Charlotte Cunningham. I am going to look her up today. Thankfully I have no autoimmune issues that I know of. Like I said, I'm surprised to be here at all. It seems as though I will have long stretches of time with zero issues then things go astray and my system falls through. It will take me awhile to come to terms with this I'm sure. My biggest concern is my son. Just want to make sure he is happy and healthy and I am present in every way for him:) thanks for introducing yourself
deleted_user
Misty, it's nice to meet you as well. I think that there a lot of us in Michigan so I wouldn't be surprised if you ended up at some point in a good group of fellow Zebras. I am very familiar with Dr. Charlotte Cunningham-Rundles. She is probably the most knowledgeable doctor in the country when it comes to CVID. Her offices are located in NYC, so it is somewhat of a commitment to see her. Oddly enough, after all of these years of admiring her and her work, mostly her research, I am planning a visit her sometime in the fall. She is 71 years old now and I am afraid that she may retire before I get in there. That really prompted me to go for it. You should be able to find loads of information about her online. A couple of years ago I went to Houston to see a gastro doctor who had done some research work with her to try to get some help with my endless GI issues. He did help some, but no miracles. Unfortunately at this point in time, there are not many miracles for us. Anyways, I am going to try to contact her this week to set something up for the fall. I'll let you know what I find out as soon as I know something. I'm sure the whole adventure will be expensive, but worth the price.
cherylfrazierpace
Greetings from Florida. I found this website because I, too, am newly diagnosed. I've been fighting back tears for the past few days - this is all so overwhelming. I don't want to say too much because I'm not sure if anyone will even respond, but I would love to get to know some people on here because I think it would be very helpful to go through this "together" with someone or some"ones". I'm very much like Misty - I've been so very active all my life but have had one thing after another for the past few years which prompted testing & ultimately a diagnosis. Misty - if I'm not mistaken CVID is due to a genetic defect, but it's not hereditary, so your son should be fine :) Hope to virtually meet you all soon!
mistycarmichael
Hi Cheryl:) nice to meet you!!! I am in the first stages of getting treatment started. I have not even begun anything yet though I'm on a prophylactic antibiotic for my never ending sinus infection until treatment begins. My doctors office phoned me today to get going on the insurance and How I wanted to proceed with either IVIG or subq but I missed the call:( I will stay on it till treatment starts. Are you doing IVIG or sub q? I want to try the Hyquvia but I'm scared. I'm scared of the whole darn thing to be honest. About your crying....don't feel bad I cried for days!!!! I still could cry lol
gliderlove
Hey Misty! Sounds like the current doctor is performing all the right tests to properly diagnose you, and is getting you on the right track for treatment! The sooner you get the diagnosis the better. Your active lifestyle and early diagnosis will greatly benefit you on the road ahead! CVID is NOT a death sentence, and does not mean that your quality of life is in question. With optimal treatment you should lead a pretty healthy and normal life! The major problems come in if you acquired a lot of organ damage from long time repeated infections, or if you have additional diseases in conjunction with CVID. And the post above was correct in saying that CVID is genetic or intrinsic in nature, and not hereditary. It should not affect your son, but if he begins having frequent infections in the future, you will know to have him tested, and can get him treated before any damage occurs:) I remember being terrified when I was first diagnosed as well. There is so much information, and taking on infusions is a big adjustment. Be patient with yourselves, and give it time. This will become the new norm and just part of life. It generally takes 6 months to a year on treatment to notice the full difference. And expect to need to make tweaks and changes to your infusion regimen before getting it right. We are all individual, and experience different effects from the medication, but there are many ways to individualize treatment to overcome any side effects, and get to a stable point where you can be infection free. Its a process in the beginning. Feel free to come onto the board with any questions along the way. We have a lot of combined experience and knowledge on here. Also the Immune Deficiency Foundation is probably the greatest resource available to us. They have easy to understand information on CVID and other immune deficiencies, lots of info on treatment, and choosing the route best for you, a comprehensive list of practicing immunologists, and they hold free family conference days across the nation where you can hear from professionals and connect with other patients. The website is primaryimmune.org. They also have a peer support program where they can connect you with someone in your area that is further along in this journey and can support you. Also there is the Gammagard Patient Support Program. You can look up their number and they have several patient advocates that you can chat with over the phone that also have personal experience with PI and can support you and provide resources. Feel free to use the board anytime you have questions or concerns. Nice to meet you all, and welcome to all the newbies! Also, sorry for all my run on sentences....too lazy to edit.
mistycarmichael
Thanks Gliderlove. That is pretty encouraging:)!!!! My doc is getting things started with the specialty pharmacy and I hope to get started in the next 2-4 weeks. I'm also hoping that my BCBS will cover Hyquvia. I would really like to that. I've been in touch with the advocates at Baxter and watched the infusion video. I think I can do this:) it's scary and rather daunting but I need to get my life back. These sinus issues have put me in a tail spin. The recovery from the sinus surgery and not knowing if staph is still present is really driving me nuts. I'm hoping that the infusions will squash this once and for all. I'm hoping that the Hyquvia doesn't leave me low right before my next treatment. We will have to see!!!' Thanks!!'
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