My Experience With Primary Immunodeficiency

Primary Immunodeficiency – it is one of my most recent diagnosis by my allergist/immunologist.  Typically, I am not one to seek out definitive diagnosis, as chronic Lyme Disease can so closely mimic a myriad of conditions, that simply the acknowledgement and proper treatment by my functional medicine doctors is typically enough. However, this time, things are different.  For over a year now, I have been working with an allergist/immunologist to first figure out the reason I am allergic to everything, and then to find why I developed Mast Cell Activation Disorder.  While I have an entire article saved under my “drafts” on the topic of mast cells, I first wanted to share an update on my personal journey with this disorder.  After the most recent panel of extensive bloodwork by my allergist/immunologist, it was clear that I have a Primary Immune Deficiency.

 Immunodeficiency

Without going into detail, an immunodeficiency disease (whether primary or secondary) is where one’s immune system is lacking adequate pieces to function properly. When this happens, fighting against literally anything and everything becomes impossible.  In turn, this creates extreme susceptibility, and in my case, chronic infection despite sufficient treatment, mast cell activation disorder, and overall autonomic nervous system damage.  My doctor believes that this “hole” in my immune system has been present since I was born (i.e. primary).  However, it was not a serious issue until it got hit with a few factors, whether it be the Lyme infection or other stressors such as the various sinus infections I had in middle school. Many years ago when I was first ruling out the beginning factors of my Lyme, my Lyme literate neurologist found that I had small nerve damage, for which he put me on IVIG.  Though I have had two Lyme tests come back positive, one of them showed the bands to be very faint.  Why? Because my body never had enough antibodies to actually fight against the Lyme and show on the test.

The Diagnosis

In short, aside from having chronically low white blood counts, my blood work also showed that I have no antibodies.  Therefore, I am left unable to fight for myself, susceptible to anything that comes my way, including staph, strep and a variety of other infections I have been dealing with for over 4 years now. Not only am I susceptible to the “bad guys,” but as a result of having no antibodies to fight, my mast cells compensate and continually misfire.  My doctor likes to the use the analogy of the police coming to the rescue of a raging fire.  While it is nice that they are there, what the situation really needs is a slue of firefighters who can actually put the fire out.   In the case of my body, the mast cells are the police men.  It’s great that they are there, but really, they are quite useless in their act of defense, and in turn, create a myriad of other health complications due to the substances they are constantly releasing in my body (histamine – to name one of the most commonly known).  All in all, this diagnosis accounts for a large portion of the symptoms and conditions I experience on a daily basis.  While it was always quite obvious to me as the patient that something was wrong, a definitive diagnosis allows us to pinpoint how to fix the issues at hand.

Intravenous Immunoglobulin

The treatment my doctor has prescribed is IVIG, something I did for two, six month intervals a few years ago.  However, unlike my LLMD neurologist, she is going to start me very low and slow, with 2.5 grams per week, slowly adding up until I reach 60 grams.  Because I have gotten to the point of not being able to restore my body on its own, I must call on other’s supply for help.  By receiving immunoglobulins on a weekly basis, I will be able to slowly rebuild my immune system.  In turn, this will help my POTS, Mast Cell Activation Disorder, state of chronic infection, and resulting, body wide symptoms and health complications.  While there still is a long road ahead of me to obtain true health, this diagnosis will serve as a large piece of the puzzle to restoring my body.

What About AIP?

This situation serves as a great example of both the strong influence that proper diet and lifestyle can have, while also showing its limitations.  I have been following the Autoimmune Protocol, a long with various other healing diet and lifestyle protocols that I have needed in order to try and heal.  Yet despite following everything to the T (I’m a major type A personality), my body has not healed like it should.  As someone who hasn’t touched any form of sugar in years, eats organ meat almost everyday of the week, has successfully reduced stress, gets enough sleep, movement, and the variety of other primal life principles, I still deal with various issues that I technically shouldn’t be.  Yes, following AIP/Paleo has and continues to be a huge factor in my healing.  Even my allergist/immunologist recognized the fact that if it were not for this extremely healthy way of living that aims to support my body on all levels, I would be a lot sicker than I am today. That being said, everything I do has not healed me, rather has allowed me to cope and make the best of what I have.  However, it doesn’t and isn’t going to be this way forever, as getting my immune system back in action will allow my health-promoting diet and lifestyle make me thrive (not just cope).

Note: This is not a highly technical article, rather one sharing my person experiences and knowledge learned by my doctor.

 

References

Fernandez, J. (2015). Overview of immunodeficiency disorders. Retrieved from http://www.merckmanuals.com/home/immune-disorders/immunodeficiency-disorders/overview-of-immunodeficiency-disorders

Immune Deficiency. (2015). Immune Deficiency Foundation. Retrieved from http://primaryimmune.org

2 Samuel 7:22 ““How great you are, Sovereign Lord! There is no one like you, and there is no God but you, as we have heard with our own ears.”