My name is Heather and I live in Huntsville, AL. I have a 9 month old little boy who I will be getting tested for PID. I'm hoping to get some help for this thing I have so that I can have more energy for my family and myself.

I was finally sent to an immunologist on 2/3/06 and given a diagnosis. I'm excited and scared at the same time. My IGG was 360, IGA 36 and IGM 88. I'm still trying to understand what these numbers mean even though my doctor did explain them to me. My pre-vaccine antibodies to s. pneumonia were all 0. I was given an allergy skin test which came back negative, an pneumonia vaccine and sent to find out my IGG subclass values. I will go back in a couple of weeks to find out my reponse to the vaccine.

Can anyone give me some insight on what to expect next? She mentioned IVIG treatments because I've had a sinus/upper respiratory infection for almost a year now. I'm also having stomach problems but I'm not sure if that is related.



Diagnosed with CVID 2/3/06

Heather,

You replied to my message recently and I responded to you, but somehow it posted to my message (I'm kind of new to this posting thing - so you might also want to read my reply to my own posting - ha!ha!). I also used to live in Huntsville, AL. What a small world. I used to manage some apartments there called Kings Village about 10 years ago. I am less scared and more positive today. I start IVIG treatments Monday and will keep you posted on how that goes. I don't know if you've been to some of the other sites about PID, but I have found PiA (I think it's based in the UK) and Immune Deficiency Foundation (based in the US) to have supportive discussion forums that have helped me quite a bit. Hope you treatments begin soon so that you can get to feeling better.

Heather,
I live in Alabaster, AL, and was diagnosed with CVID yesterday. I have a 9 yr old daughter and a 17 yr old stepson living with me. My husband is a paraplegic, and he is caring for all of us. The hematologist gave me the pneumonia vaccine also. I am due to return in 3 weeks to see if I have built up any antibodies. I have been on a Leave of Absense for almost 10 months now. I have had numerous sinus surgeries, and stomach problems for years. I have also had knee surgery on both knees due to osteoarthritis. I am beginning to think that the knee surgeries were unnecessary and could have been cured with antibiotics. I have absolutely no energy! I have been referred to as lazy and a hypochondriac. I am actually thrilled to death to have someone finally make a diagnosis. I'M NOT CRAZY! I was also diagnosed with type 2 diabetes a month ago. And If things could get any worse...I am being tested for ADD because I have the memory of a pea. I have to laugh about it, otherwise I would cry. I tell everyone that I am a 32 year old trapped in an 80 year old body. Thank goodness my face still resembles a 30 year old. Please keep me posted on your progress so I can feel like I am not alone. God bless you and your family.

Joy,

What a small world we live in. Your family has a lot on it's plate but it sounds like you have a strong family. My mom moved in with us this weekend and she apologized for all the years of teasing me about being a whiny hypochondriac. I ended up having to go in on Thursday for a Tetnus booster also. She said I had no antibodies for that. I hope we get our results quickly so we can start treatments. About the knee surgery, the more I read about CVID the more it appears that you can have joint problems. I wonder if this was some of the cause of your osteoarthritis. I can't believe how much this affects our bodies. Is your doctor wanting to get CT scans of your chest, abdomen and pelvic area? I've had one of my chest and I will be going soon for the other two. She said it was to make sure everything was clean and to have a good baseline xray. I will keep you and your family in my prayers. Here's to hoping we start on the treatments soon and will be given a new lease on life.



Diagnosed with CVID 2/3/06

Misha - I can't believe you used to live in Huntsville. That's so funny. I know of Kings Village. I can't wait to hear how your first treatment went. I know it's going to make you stronger.



Diagnosed with CVID 2/3/06

I, too, have recently been diagnosed with CVID. Because I am a computer science professor with a brother who is a physician I have done a lot of research on this disease. It commonly presents after a series of recurrent infections. From what I have read, many people who receive the diagnosis are relieved to have a diagnosis because they have been sick for so long and are so tired of being sick that it is just nice to know what the underlying problem is. I know that was the case for me. Recurrent diarrhea and many sinus infections along with the occasional pneumonia and recurrent bronchitis were my symptoms. These appear to be common ones.

The current treatment requires patients to go to the doctor's office or hospital outpatient clinic about once each month. You get hooked up to an IV, and wait while the medicine is mixed up. It does not dissolve easily so it takes an hour to mix. While you are waiting the nurse will give you tylenol and a pill to prevent an allergic reaction. Then they hook your IV to the bag that contains the medicine and it is slowly infused. After a few minutes if you are ok, the nurse will increase the infusion rate. They watch you carefully to see if you are shivering or cold. If you are not, they increase the infusion rate again. If you do start shivering as I did, the nurse will stop your IV and hook you up to a saline solution instead, and call the doctor for instructions. In my case the doctor said to give another of the pills to prevent the allergic reaction, and start the infusion again at the slow rate. The second time it worked. So now I need to take two antihistamine pills before I start my infusions.

For me the infusions have been very helpful. I have had much more energy since I am no longer sick all the time. I am a runner, and I entered a 15 kilometer race recently and won second place for my age group! The only problem with the infusions is that they wear off and getting the next one takes several hours. My insurance covers the expense.

I am excited to see the FDA in the US approved in January 2006 a subcutaneous pump that would allow infusions at home using a visiting nurse. Perhaps patients could even be trained to self-administer the medication. That would be a real break-through, as then I would be able to give myself my medication instead of having to take time off from work to go to the outpatient clinic. I am keeping my eye on this development and communicating with my health insurance company so that I can use the less time-consuming approach.

You should also find out which medicine you are receiving. Some drug companies have a program that allows you to build up credits while you are insured so if you lose health insurance you can receive the medicine for free. I found out my drug company has such a program, and signed up after my first infusion.

Hi Heather,

I was just diagnosed with CVID this last Tuesday and believe me, from what I have read about some of the responses that you got from people, it seems like I am not the only one. I have just started my IVIG therapy and it's kind of a pain in the butt because the frist visit is about five hours long but after the frist 2 hours, you get tired if everything is okay. Everything for me went fine and they checked on me repeatedly to see if I was okay but for the most part, I am in the same boat as you in trying to find out as much ifo as possible of this rare problem. I hope everything goes weel and from what I have been told, the IVIG is just start of calming your system down in trying to found by more testin g of what is really going on in your body because knowing that you have CVID is just the tip of the iceburg.

I have a question for mhvatum! When you found out the medicines that were given to you, how did you get ahold of the companies that make them and how did you know who made them so you could build up credits??
I would love to find out more on how to do this.

I am 35 and was just diagnosed end of August with CVID. I am waiting for my insurance to approve to IVIG. I am scared and would love to talk to someone. I have been sick for the past year and a half with all kinds of infections. Pneumonia, kidney infections, strep, etc. It just doesn't stop. I am hoping that the IVIG will make me feel better and help me to not be so sick so often. I have no energy and my two kids have been so understanding and helpful. They are 6 and 4. I just want to feel better so that I can be the mother I always dreamed of being. My knees hurt, my wrists hurt, and my lower back. I was in the hospital middle of August with sreptococus pneumonia. They ran a test on my immune system and it turns out I don't have one. My IGG was 61 my IGA 4 and IGM 5. Please let me know how your IVIG's have made you feel.

They help, but for me they have there own little side effects. I have recieved about 8 Ivigs and they have dramactically cut down on the inffections. I still feel sick, but I'm told I need to learn to pace my self. Remember the big word in CVID is variable. It varies from person to person. I use to only sleep 4-6 hours a day, now I need 9-12. I don't get so sick I have to go to the hospital anymore, but my wife(Nancy) may disagree. Hang in there, be tough for your children, I have twin 10 year olds, some days I feel I letting them down. But Its not me it's the disease. When I feel good or great I take advantage of it. Take care of your health, research your condition and take charge of your treatment. I hope this helped E

Yes it helps. Thank you for responding. People sympathize with you but unless you are living it yourself or are a spouse living it with it you really can't relate. Supposed to get IVIG tomorrow. Hope it goes well. Can't wait to start feeling somewhat better.

Thanks,
Laura

Hey Alabamians....I am a peer contact and live in Cullman. Feel free to contact me. I know others like us in Alabama and other places in the country. It is good to get to know others that can relate and we sure need a voice in our state and around the country. I also am IgG Deficient.
November4@BellSouth.net Take Care...Connie

I welcome others that need a peer contact.