*sings and dances*
I’m broken and I have proof, I’m broken and I have proof!
Before I get to the good news, let me back up a little. Earlier this year, I went to an immunologist my ENT/allergist had recommended I see. It was the worst appointment I have ever seen and because of it I terminated my relationship with my ENT/allergist and decided to seek care elsewhere. You can read more about my appointment from Hell: here.
After that awful appointment, I went to my rheumatologist. Some of what the horrible immunologist had said about my conditions really shook me, so I wanted to double check on my fibromyalgia diagnosis and get a little more clarity as to why I had received the diagnosis exactly. I also wanted to get a recommendation from him as he is an amazing and brilliant doctor and has given me many excellent recommendations in the past.
I set up an appointment with the new immunologist for February 26th. That first appointment was amazing: an hour and a half of him truly listening to every single thing I said as we went through my history system by system, asking me in detail about many of my parents’ health conditions, him formulating hypotheses out loud about what may be going on and what may be connected to what, and then figuring out testing to run. He requested records from several doctors to make sure they hadn’t missed anything in their tests, and he ordered a bunch of lab work.
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Got my blood drawn today to kick off my immune testing with the new (and awesome) immunologist! I also need to do a 24 hour urine catch this weekend. From what the tech said, it looks like he'll be checking my histamine, or something related to it, with the urine test. . From my receipt, it looks like 18 tests will be run on my blood and urine. They drew 9 vials (a new #SpooniePR lol). I do NOT know what some of the tests ordered are, but a few are pretty simple. He will be checking my vitamin b12, folic acid, iron binding capacity, iron, and ferritin. There are five more written out on my receipt, but I'm not sure what they are (to the interwebs I go). . I'm really hoping all of these tests will give us some answers and help get me on a path towards less reactions and better health! ... ... #Immunology #ImmuneSystem #MCAS #Allergies #Eosinophilia #ComplexAllergies #ImmuneDeficiency #PoorImmunity #ChronicIllness #ChronicConditions #InvisibleIllness
It did take a little while for the testing to get ordered properly, and put into the system. But I was able to complete all of the testing by my birthday (March 19th). I was told to call back after I completed the testing to get my follow-up scheduled. However, since my surgery was scheduled for the 27th of March (posts here and here), I wanted to wait to schedule until I was feeling better.
Thankfully, when I called, they were able to get me in the very next week at three weeks post-tests (which is exactly when he wanted me back anyway). I saw him for my follow-up on April 9 (2018), and finally got answers I have been searching for for over a decade!
I’ve known for a very long time (since I was about 13, or even before) that something wasn’t quite right with my immune system, above and beyond my diagnosed asthma. My body just wouldn’t cooperate: I would get much sicker than my peers, stay sicker longer, and be sicker far more often. I also have had a bajillion skin infections (almost every cut I get on my hands and feet, unless I go above and beyond, gets horribly infected – so many antibiotics). Oh, and the respiratory infections, sinus infections, and sore throats have been ridiculous. And then the Great Ear Saga of 2015. But no one knew what to do with me, so we just treated things as they came and shrugged. In high school, even my friends started wondering what in the world I was doing that was getting me sick so often. But no one knew.
When I started getting symptoms of my chronic illnesses, and then diagnoses, it was overwhelming and I temporarily gave up on my hunt for overall immune system issues. However, October 2017 I got horrendously ill immediately after I had been at the peak of my health (for the past 5 years anyway). And then I stayed sick. Every time I would think I was getting a little better, I would immediately get sicker. This cycle only just ended a few weeks ago *knock on wood*
Obviously, this new cycle of terrible immune responses started me back on the search for answers. That’s how I ended up at the awful doctor earlier this year. But, thankfully, that led me to this amazing doctor! (This new awesome doctor is Dr V.)
AND NOW I HAVE ANSWERS!!!!!!!!!!!!!!!!!!!!!!
Dr V ordered a bajillion tests (okay, 17 tests, it just feels like a bajillion when you’re looking at the orders and results). From my LabCorp results papers: “T- and B- Lymphocyte/Nat Killer; Pneumococcal IM (14 serotype); Lymphocyte Stimulation Panel; IgG, Subclasses(1-4); Iron and TIBC; Immunofixation, Serum; Natural Killer Cell Function; Vitamin B12 and Folate; Immunoglobulin D, Quant, Serum; Immunoglobulin E, Total; Tryptase; Vitamin D, 25-Hydroxy; Methylmalonic Acid, Serum; Homocyst(e)ine, Plasma; Ferritin, Serum; Venipuncture” (I feel like there’s supposed to be more after that, but that’s all the paper says) and “Histamine Determination, Urine.” Now do you see why I keep saying “a bajillion” tests?
There are several abnormalities, but not where I expected. I was expecting at least some abnormalities in the allergy department, but that wasn’t the case. I was also expecting my eosinophils to be elevated, because they’ve been elevated on every blood work for years until I did the prednisone recently and then got blood work done in the ER that showed zero eosinophils (literally the first time I’ve ever seen that number). Apparently, they’re still low because they’re normal on this blood panel as well! I have eosinophilic esophagitis, so my eosinophils being normal is not supposed to be a thing. Whatever, I’ll take it because I really haven’t had any esophageal problems this year!
Most of the abnormalities that showed up Dr V believes are “side effects” of the two main problems. Well, what he believes are the two main problems anyway.
I have two types of immune deficiency! Yes, I’m excited about this because I’ve known for so long that something had to be wrong with my immune system! Together, it’s called “combined immunodeficiency.” Apart, they’re called “specific antibody immune deficiency” and “cellular immune deficiency.” I realize those names don’t really tell you what is going on, so I’ll explain more! And the best part? THEY’RE TREATABLE!
Specific Antibody Immune Deficiency
The pneumococcal test checked my blood to see how many antibodies I had for 14 of the most common strains of streptococcal bacteria (aka: strep). You develop antibodies when you encounter an illness, which is why you’re only supposed to be able to get a specific illness one time (which is how vaccines work – they make your body create antibodies so you either don’t get sick at all of barely get sick depending on how many antibodies you create). The reason you can get the flu multiple times is because antibodies are specific to each strain and there are a bajillion of strains and mutations of the flu virus. But conditions like polio, chicken pox, small pox, shingles, and others are all [supposed to be] “one hit wonders.”
Strep bacteria are responsible for most bacterial respiratory infections (sinus, throat, lung), and are one of the common causes of skin infections (infected cuts, etc). For all 14 types, the “normal” value is anything greater than 1.3 micrograms (μg) per milliliter (mL). For 5 of the types, I have less than 0.1 μg/mL. For 2 of the types, I only have 0.1 μg/mL. For 3 types, I have 0.2 μg/mL. For one type each, I have 0.3 μg/mL, 1.2 μg/mL, and 1.3 μg/mL. One of the 14 types is actually normal. That makes 11 types of strep that I have less than 0.5 μg/mL of antibodies!
Too many numbers? For 13 of the the 14 types tested, I have less than the normal amount. For 11 of the 14, I have significantly less than the normal amount of antibodies!
THIS EXPLAIN SO MUCH! I have had so many sinus infections, I only will go to the doctor if they knock me flat on my back (usually, they don’t because I get so many) or if they won’t go away after two weeks. But I have at least 6 a year, I would say. The ear infection from the Great Ear Saga was cultured when it wouldn’t go away and came back as a strep bacteria. Every single time a cuticle tears or I get a cut near it, they get horribly infected (thankfully, I can usually kill the infection without medical intervention now, but not always and it took forever to learn how). I’ve had horrendously infected ingrown toenails before. I had a very small cut recently that ended up turning into lymphangitis even though I kept it extremely clean and used antibiotic ointment. And I get so many other respiratory infections and sore throats I couldn’t even begin to count them all – like, I can’t even count how many I had in 2017 alone.
I have no ability to fight off strep at all.
Luckily, this one is pretty easy. I get the Prevnar 13 vaccine and a month later get the PneumoVax vaccine. Together, they boost your immunity to all the common types of strep. Then, in a few months, we’ll recheck the blood tests to see how much of a benefit I’ve gotten because it’ll give us an idea of how long they’ll last for me.
Cellular Immune Deficiency
First of all, my natural killer cells were a little screwy. They’re technically not “abnormal” but they’re very sluggish. Natural killer cells are a type of immune cell that helps to kill cancers and other infected cells, and work with T-cells to govern your immune system. The “normal” range for the natural killer cell function is absolutely massive: 5.8 – 59.2 (the units are very screwy, so I’m just going to use the raw numbers). My natural killer cell value is only 10.8, which is way near the bottom of the range. While normal, it definitely shows they’re sluggish and don’t function very well.
The main part, however, is that my T-cells have very low function. T-cells are one of the main conductors of the immune system. They tested the function of five subtypes of T-cells, with each subtype being linked to a specific thing that it targets. They take the cells, test their activity when unstimulated for a baseline, then they stimulate them to see how much the activity increases. Each type has a different “normal” range. My baseline (unstimulated) value was 1. The T-cells for candida and tetanus both have a normal range of greater than 10. Well, my candida and tetanus T-cells are far below normal. My candida T-cells had a stimulated value of 4, which is less than half the normal range. My tetanus T-cells had a stimulated value of 1, which is my unstimulated baseline… meaning the tetanus T-cells don’t do anything at all. Yup, nothing. I’m now wondering how I’ve never had a tetanus infection!
Since both of the major “conductors” of my immune system are sluggish or inactive, my entire immune system is sluggish/inactive. Once again, this explains so much about my body and why I’m sick all of the time. I really can catch the same bugs over and over and over again, and I can catch anything.
Luckily, both the sluggish natural killer cells and inactive T-cells should be fixable/treatable. I’m supposed to start L-Lysine and turmeric supplements, and we’re going to try switching me from randitidine to cimetidine. Together, all of these should help boost the function of the natural killer cells and T-cells.
Interestingly, T-cells have H2 receptors on them. Some scientists were wondering what happened if those receptors were blocked, so they threw some T-cells into a test tube with some cimetidine, and then the T-cells worked better! That’s the only H2 blocker that has been tested with T-cells, so we’re specifically going to be trying that one as the results are known.
Now, if you’ve been following me for a while, you may recall that I had LEAP/MRT testing done, and that it showed I was sensitive to turmeric. I have not actually tried adding it back into my diet because it’s very easy to avoid, so we’re not sure how I’ll react to it. Because we’re uncertain about my reaction to turmeric, we’re going to start with baby steps on the supplement. He didn’t use to prescribe it, but he had a few people that didn’t tolerate the cimetidine, came off it (without consulting him) and randomly decided to start turmeric. Those few patients still had improvement in their T-cell function, so he now prescribes both turmeric and cimetidine and has seen greater improvements than he did with just cimetidine. Thank you random people, haha! But, if I can’t tolerate the turmeric, I am hoping I’ll at least tolerate the cimetidine and will get benefit from it!
I’m extremely excited to have found a major part of why my system is so messed up. And the best part is? It’s fixable/treatable! I’m super excited!!!! Usually, if we do figure out my problem, it’s just a “you’re likely going to struggle with this your entire life, and all we can do is treat symptoms as you get them.” This time, we get to treat the underlying causes and see dramatic symptom improvement (hopefully)!!!!!
I already did the Prevnar 13 vaccine (I went straight from the appointment to the pharmacy and got the injection haha). So now I’ll just wait the month and get the next one!
We’re also going to do blood allergy testing, because I don’t have to come off of any medications that way! However, the testing requires about 20-25 vials of blood, so I have to be very well hydrated (and probably take a snack and some juice to boost my blood sugar back up after the draw). But I’m super excited that I won’t have to torture myself for a week during the start of one of my worst allergy seasons!
Having direction and answers is amazing!!!!!