Hello all,
I've had terrible asthma my entire life, and somewhat recently discovered that my immune system is also malfunctioning, and so I'm trying to learn more about each of these, with the hope I can improve my health and well-being.
My childhood asthma began when I was around 3yrs old, and during childhood and my teen years I was hospitalized multiple times, was flown flight-for-life twice, and was in the ICU. After my first hospitalization I was put onto theophylline, which helped some, and after the 2nd hospitalization my parents were given prednisone to administer to me when they thought I was getting sick. This system worked well, and I had no more hospitalizations until I got bacterial pneumonia during my last year of high school. Thankfully I recovered quickly and was home in a few days.
Also, I've had severe rhinitis my entire life, which most likely consisted of both allergic rhinitis and non-allergic (vasomotor) rhinitis. My dad has asthma and rhinitis as well, though his asthma is much less severe.
After high school, I was told about Advair, which I was started on with 150/50 (less corticosteroid). I felt tremendously better and no longer needed to use albuterol constantly, but my FEV and FVC values were still very low (always around 50-60% of expected) and so my doctors continued to repeat that my asthma was not controlled, and put me on stronger doses of advair (500/50 now).
Even though I *felt* amazing, my numbers never improved much, and so I was sent to National Jewish, where they determined I must have had irreversible airway remodeling. So my goal was to simply prevent my asthma from becoming worse.
That was over six years ago, and now my asthma seems a little worse. I do not wake up at night coughing or wheezing, and my o2 saturation is usually normal. However, my FEV and FVC are always poor, and breathing overall feels more laborious even though I don't wheeze or feel the need to use albuterol. Small bursts of exercise improve my breathing, but I can't withstand moderate exercise lasting longer than a couple minutes (I will *not* have an asthma attack, but will need to quit exercising. Sometimes I'll yawn and feel tired (probably from CO2 buildup).
Around four years ago, I had more allergy tests done, and I've always come back fairly allergic to most things, with the strongest response being to cats, dogs, mold (alternaria), and cottonwoods. I was recommended Xolair injections, and started those a couple years ago. Doctors asked me if I felt better, and I reported that I didn't think so. However, *I don't usually have asthma symptoms (coughing, wheezing, etc)* so I don't feel that I can determine subjectively whether or not Xolair had any positive effect on my immune response / asthma. FEV and FVC remained about the same.
Now, all of this might seem fairly normal for someone with chronic asthma. However my doctors discovered something odd recently that has put me into a research study at the NIH.
When I was a child, my parents were mostly anti-doctor and anti-science, and favored alternative "remedies". Thankfully they took me to the hospital when needed, but they never took me to get my routine vaccinations. When I was out of high school and on my own, I got a couple important vaccinations (I don't remember which ones) but my doctors never took followup samples to verify proper antibody response.
After I stopped taking Xolair, I mentioned to my doctor that maybe we should check my immune system for deficiency, since I just *had a hunch* from reading various material online. My doctor posited that my immune system would be fine, since allergy and asthma is caused by an overactive immune response. However, I told my doctor about my lack of vaccinations as a child, and therefore he decided I should definitely get those vaccinations - and that we would then verify proper antibody formation.
Well, we were astounded to find out that I had no immune response to the first vaccine (I believe it was tetanus). We tried a couple more vaccines and tests with the same result. After this, my doctor communicated with the NIH, and they accepted me into a research study on immunodeficiencies. The study is currently ongoing and no pertinent information about me has yet been discovered. The NIH is awesome, and hopefully I'll be going back in a year or so for a follow-up.
Unfortunately, my doctor (and other medical professionals) don't know the underlying mechanisms of action which are able to cause the immune suppression that we see, and still also cause asthma and allergy. My diagnosis is currently unknown but most likely CVID, but CVID is Common Variable Immunodeficiency, and so the cause is unknown. Perhaps it was acquired (and my allergies are less now, but asthma is the same (due to obstructive airway disease)) or perhaps I've had this my whole life (likely) and my recurrent hospitalizations as a child, and my bacteria pneumonia, are the cause of infections. I've also had two sinus surgeries in my adult years, and both times pre-surgery CT scans showed that my frontal sinuses were 100% obstructed by massive amounts of infected mucous.
What's bizarre however; and this gives me some hope - is that while at the NIH I was given the MMR vaccine (live attenuated viruses) and I was shown to have an adequate response to it. They said this was helpful info, and suggested I get a live chicken pox vaccine, but my local doctor recommended against that, saying there'd be a risk of contracting it due to improper immune response).
(I've begun having abdominal problems as well, but this post is already two pages
. Been seen by gastroenterologist and had two tubular adenomas removed. No other problems reported. Symptoms went away after taking antibiotics for a different reason, but now have returned. Probiotics have limited effect.)So... I'm curious about various immunomodulating supplements/diets/other that could potentially *boost* my immune response to compensate (although I know it might be impossible depending on mechanisms of deficiency), as well as hopefully any synergistic anti-inflammatories. Also, any ideas as to how I might have an immune deficiency and yet have allergies and asthma. I have read that some types of combined immunodeficiency could allow an infectious agent to cause airway inflammation and disease. However, it's not thought that the cellular portion of my immune system is broken, otherwise I would likely be dead or at the least be sick *all the time*. I only present with persistent sinus infections and abdominal problems.
Any suggestions are much appreciated. Thanks!
-edit- summary and list of symptoms etc:
- Ongoing asthma with low FEV1 (2.9 - 3.1) ~55% expected, consistent with airway remodeling
- Post albuterol nebulizer FEV1 up ~8%, some possible reversibility
- Difficulty exercising, but no exercise-induced asthma attacks.
- Persistent sinus infections. Reduced dramatically following surgery + routine nasal rinses containing .5MG Budesonide each nostril 2x daily. Trying to get off of Budesonide per Dr, but nasal congestion follows.
- Lung and sinus airways extremely sensitive to smoke, perfume, chemicals, allergens. Vasomotor rhinitis.
- Cycles of stomach discomfort, massive bloating, etc. Endoscopy and colonoscopy found tubular adenomas, but no infection or inflammation in large intestine or stomach. Eliminated entirely by Ciprofloxacin (taken post sinus surgery). Stomach never felt better. Symptoms have returned.
- Memory and brain function subjectively worse. Scored less than expected on Cambridge Brain Sciences tests. Family history of depression and anxiety. My mood is good, verbal fluency, learning, and memory seems impaired. Possible LD?.
- Moderate to severe vitamin D deficiency (16 nmol/L). Taking 1000 - 2000iu vitamin B3 daily. Will check serum levels in a couple months.
- Fair to poor diet, little exercise.
- Fall asleep quickly, get 6-8 hours of sleep.
- Impaired immune response to polio, tetanus, pertussis, pneumonia vaccines. Supposedly good response to live MMR vaccine administered at NIH
Edited by samssf, 12 August 2012 - 08:36 PM.
