Focusing on the Whole

CVID is not an autoimmune disease.  What’s the difference? Per the Primary Immune Foundation, “CVID is an immune deficiency – a hereditary or genetic defect in the immune system where part of the immune system is missing or does not function properly.  Autoimmune is an abnormal immune response to a normal body part.  Something triggers the immune system to attack part of the body.  There are many different types of autoimmune diseases which involve different parts of the body.”

Several of my friends kept referring to my disease as an autoimmune disorder. I knew it wasn’t an autoimmune but I didn’t know how to explain the difference. So, I wrote the professionals and asked. I’m glad I did. For the 1st time since receiving my diagnosis I’m able to wrap my head around why eating healthier, such as eating all my green veggies and taking my vitamins etc., won’t help. It won’t make a difference because the part of my body which manufactures IgG is broken.

When a part breaks on your automobile, your mechanic replaces the part with a new one and off you go. Not so with the human body. I surely wish it could be that easy, but alas, it’s not. The good news, there’s treatment; replacing the needed immunoglobulins through infusion-therapy.

Oil changeImmunoglobulin therapy is kind of like replacing the oil in your car. Unlike your automobile however, where replacing a quart of oil makes your car run efficiently immediately, infusion-therapy is ongoing, never-ending and can take months, or a year or more before your levels raise enough to make a difference.

Many diagnosed with CVID have more than one diagnosis. Many are diagnosed with an autoimmune such as Lupus, Fibromyalgia, Irritable Bowel, Celiac or others. The question in my mind, then becomes, “Are those who have a PID more prone to an autoimmune disorder?” It was my rheumatologist, who early on in my diagnosis, suggested that my rheumatological factors may actually stem from having CVID. His comment didn’t go unnoticed. I don’t know if any research is being done in this regard. Not sure it matters. My detective mind couldn’t help but wonder though.

Tom O’Bryan is the 1st author I’ve read, who goes into detail regarding our army of IG’s (IgA, IgG, IgE, IgM, and IgD). While his focus is on autoimmune diseases rather than PIDs, what he shares will carry over easily into my Mt Everest quest towards healthiness. His discussion on our microbiome gave me a clearer picture of the important role our digestion system plays in our health. Did you know that our gastrointestinal tract, AKA gut, is where 70 to 85% of our immunity resides? Did you know there are actually 4 different immune systems within our body? The largest one is in the gastrointestinal tract. There is another in the liver called the Kupffer cells. A 3rd comprises the white blood cells found in our bloodstream and finally there’s the one in the brain made of glia cells.

Since my digestive tract is a huge component in how I feel, I’ve decided to place my focus, for now, on healing my gut. Today, I added a 2nd book to my arsenal of research. Digestive Wellness by Elizabeth Lipski, PHD, CCN, CHN. I think it will be a great compliment to the Autoimmune Fix. Truthfully, I pulled it off my bookshelf. I’ve had this book since December 2015. Guess it’s time I cracked open the book 🙂 .

It’s easy to get focused on our diagnosis and lose sight of the whole. Using the same analogy as earlier, imagine how our cars would run if we only focused on the oil. I suspect it’s the same with our bodies. God designed our bodies to be an efficient, self-healing machine.  While, eating healthier may not heal me of CVID, it doesn’t mean I shouldn’t do whatever it takes to feel better and be healthier.

Take the first stepFirst steps to having more good days then bad. I hope 🙂

  • Water consumption! Most experts agree most of us are living life in a dehydrated state.  Of course they don’t all agree on how much is required.  The consensus is to drink somewhere between 64 oz and 1/2 your body weight in water per day. My goal: to increase my intake 8 oz (per day) each week until I’m up to 1/2 my body weight. 
  • Bye-bye gluten! Almost everything I’ve read implies that gluten is largely responsible for the digestive issues many experience in today’s world. My goal: to be completely gluten-free or at the very least gluten light by October 31st.
  • Organic is key! Buy organic as much as possible. My goal: begin with my next grocery shopping trip.
  • GMO goes! Almost all experts agree genetically modified food is not good for our bodies. If only the FDA would get on board and ban them. My goal: to get as GMO free as possible.

Sounds easy enough, right? As I shared in a prior blog, for me, it’s like climbing Mt. Everest. It’s going to be a slow climb. Baby steps! Each step, big or small, takes me closer to the goal. Will it be worth the effort, or energy expenditure. Will it be worth the frustration; of which I’m sure there will be plenty? Only time will tell.

Until next Friday’s “Zebra Strong” post
Be encouraged, you are not alone.

“I will praise thee; for I am fearfully and wonderfully made; marvellous are thy works, and that, my soul knows right well.” Psalm 139:14

I’ve written over 20 articles on CVID.  If you would like to read more on this subject type the word CVID in the keyword search box.

Please, feel free to leave a comment. Also, if you suffer from CVID would love to hear a little about your journey through the maze of Primary Immune Disease.