Hi Amy
I'm assuming you had the blood tests and pneumonia titre/antibody test done to help in diagnosis? You will probably want to find an immunologist who is familiar with CVID. The best place I found to get help is Immune Deficiency Foundation http://primaryimmune.org/ I was diagnosed a year ago after very similar sounding situation to yours. Sick starting at 4 mos, diagnosed at age 41.
I've been relieving SubQ for 15 weeks, and am starting to regain energy--still fighting tremendous fatigue, but improving. And as of now, I'm free of a sinus infection for the first time in a year.
This is a great place to get answers to questions and get support. There are also a couple Facebook pages and a FB page for prayer support (if you are so inclined).
Blessings and welcome!

Hi Amy! Welcome!
I'm Sarah and I am 31yrs. I was diagnosed in 2010 after years of being sick and many miss diagnosis..

There is a discussion that Kelli just put on here for the newly diagnosed.. Really good sites for information.

This overwhelming at first. But once your able to make some changes to your life style it is do able. I have two small kids and a husband. I can say that i do miss a few things like for example my counts were low so i chose not to go to the circus w/ my family due to the crowds to prevent me from becoming more ill or catching something else.. But I was able to see picture and i made other plans with my family so that i am able to do quality and fun activites. My kids have been great with understanding that some times mommy just do certain things..

We are a great support group. we all can in one way or aother understand what each are going through. We have a variety of back grounds and experiences that we share..

Again Welcome and breath.. You have a diagnosis and now you can work on treatment and getting better.. :)

> I feel like I have not been able to find much for research. Now I


In addition to the previously mentioned site, here are two papers that I quite like:

http://ccjm.org/content/73/2/133.full.pdf (link)

http://ccjm.org/content/73/2/133.full.pdf (link)


I would strongly encourage you to ask for a referral to an immunologist, who will be better-prepared to deal with the ins-and-outs of this problem.

Sorry, I pasted in the incorrect address for the second PDF. Here it is (corrected):

http://www.medicine.wisc.edu/~williams/cvid_lancet_2008.pdf

Thanks for the web site. I did find a some info there. My asthma specialist is also an immunologist. ( He actually has a very high ranking among the asthma and immunology association) and after receiving the vaccine for the pneumonia he said, "Your body said, what was that ? a tick tack!"
Amy

Hi there Amy and welcome to the board. You will honestly probably find more information here than anywhere! LOL! Everyone is great. The treatments sound scary and for some they can be. You have 2 options as you probably know:

IVIG - intravenous - this is likely what you will start on (thats the recommendation). For some its a total piece of cake, for some like me, I had horrible side effects like spinal tap migraines, bed ridden for 3 days, just not do-able.

If you chose that option - PLEASE disucss with your doc about going SLOW. Like 6 hours slow. Here's the thing, people want to slam through it and often feel fine, but then they get home and it hits them. Then its too late to take the infusion speed back. You can always speed up a little the next time. Hydrate with good water a couple days before and have gatorade on hand incase you get the migraine and aches. And be prepared to be down the day after infusion. Like DOWN. The pros? Its only once a month and you don't have to think of your disease again :)

Subq - subcutaneous (in the skin) You insert the needles in your home, when your'e ready - weekly. WAY less side effects (for me none), keeps your levels more stable, could take a couple hours each time.

Time - give it time. This is NOT an instant fix. The experts say 6 months to a year. You will gradually just suddenly notice you are getting sick less and less.

Hope - With treatment most people live a pretty normal life :) WARNING - sorry for the repeat friends - I am a single mom, work 9 hours a day and own my own home. I have VERY little support (lots of virtual support tho).

Try not to worry about what your future holds, your child getting it (less than 10% pass it on to their kids), etc. You have overcome one of the biggest obstacles - diagnosis. Give yourself a big hug for that.

Have a conversation about your doctor and make sure he treats the patient and not the levels. If your sick all the dang time, who cares if your IgG is over 1000 right? KNOW your levels. Keeps copies of all labs.

I LOVE www.primaryimmune.org. I have personally found that www.immunedisease.com is a slightly easier read about CVID though.

As soon as you start your treatments, sign up with the manufacturers program - most, if not all, offer "certificates" incase you ever lose insurance. You will get "credit" for each infusion you do (they all vary slightly).

Here is a paper published by one of the top docs in this field:

http://bloodjournal.hematologylibrary.org/content/116/1/7.long

Ok well I've probably given you an aneurysm with all this info so I'll stop for now!

Kelli

It is recommended that we get a baseline ct scan. At least one is recommended in the beginning. We get things like bronchectasis.

You guys are great! I had the base line ct scan and sinus scan also. I have bookmarked all of the websites, and am trying to work my way through them. It sounds like doing the treatments, (if that is what happens) on a friday and chilling over the weekend is a good idea. I am always on the go and it would be very weird to feel really down... I still am not sure what I will do but at least I have a lot more material to work with. My nurse is going to refer me to a lung doc and see if I can be accepted into our local lung clinic. (I wonder why no-one ever thought of that?) This could take months before I get an appt. tho. I wonder if I should get a second opinion about the cvid. I am actually wondering now if I even have asthma or if this may have been the underlying cause my entire life...

My immunologist had me repeat the initial blood work a month later at a totally different lab just to be sure of my immunoglobulin counts. They were the same. Also, had the pneumonia antibody test done. Thblood work and antibody tests provide a definitive diagnosis of CVID.

My immunologist is also an allergist so I haven't sought a second opinion. I was sent to this immunologist because of a skin condition that was puzzling my doctor and three dermatologists. I was surprised about the diagnosis, but looking back over the years and all my infections it makes sense.

I have found the hardest part of being newly diagnosed is trying to decide which way I want my treatments delivered, intravenously at a treatment center once a month or sub q once a week at home. I've decided that if I don't like the method I choose, I'll try the other way! There may be some tweaking involved. Good luck making your decision.

> I have found the hardest part of being newly diagnosed
> is trying to decide which way I want my treatments
> delivered, intravenously at a treatment center once a month
> or sub q once a week at home.


The recommendation from the Immunology department at the Hospital for Sick Children (in Toronto), a leading center in CVID research, is to start with IVIG for the first 3-6 months in order to establish minimum trough levels around 9 g/L. In their experience, subq isn't as good at bringing trough levels up at the beginning (but it is good at maintaining it over the long run).

Amy if your doc diagnosed you properly, meaning your IgG is 2 standard deviations below normal, with low IgA and/or IgM and you failed to mount a response to a vaccine, there would be no need to get a second opinion.

Also, from PERSONAL experience, my levels always fluctuated between 700-900 after years of treatment, with subq they are over 1300 and I rarely get sick anymore.