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At 38, I finally know What’s making me sick

January 20, 2020

At 38, I finally know What’s making me sick

January 20, 2020

My mom would say I was born sick. And she’s right. As far back as I can remember, I’ve been sick with something. I guess I had an issue with breastmilk when I was born, digesting the enzymes, so I threw up all of the time. I had petit mal seizures and heart murmurs. I had croup, and ear infections. Oh, and I didn’t talk for a few years. I also had psoriasis, in my scalp and on my nail beds, which caused my fingernails and toenails to fall off. How about that for a visual?!

me, right after I was born, and my mom. yes, we are twins.

Then the bouts of strep throat started and never ended, it seemed. I have a terrible memory, but I do remember always asking for French onion soup every time I’d get sick, and my dad or grandpa would get me some from Hotel Charlotte. It was almost worth having strep to get that soup…almost 😉 I’m sure there were discussions to get my tonsils removed at some point, but I never did.

By high school, I’d had strep A LOT, and pneumonia a few times. My senior year, I got walking pneumonia and it almost prevented me from graduating by missing too many days of school, but I eeked by somehow (I always do). I was off to college, and a new start at Appalachian State! I thought the fresh mountain air would do me some good, but I quickly became best buds with the infirmary. We’d joke that no matter what ailment you came in with (and I came in with everything), you got the same thing prescribed…Tussin-D!

After college, I came back to Charlotte, got married to Joshua, and got pregnant with Bella almost right away! Let’s pause for a moment because this is important, and I know other women have mentioned doing the same thing. I went from a pediatrician when I lived with my parents, to random doctors at my college’s infirmary, to my OBGYN. And, oftentimes, I treated my OBGYN like he was my regular doctor. Hell, if my ankle hurt, I’d ask him to look at it LOL!

I didn’t get a gP/pCP. I realize now that i should have.

So I’m 25 and have a new baby, and of course my familiar friend, strep throat, shows up. Well, now we have Minute Clinics, and I can just go there! No need to find a doctor, and wait for an appointment! I’ll just go to the CVS up the street, and that’s exactly what I did every single time I’d get sick for the next five years!

Until at 30, I’d decided I’d had enough. I finally saw an ENT after the Minute Clinic PA said, “I’ve seen you so many times for strep….why don’t you have your tonsils removed?!” I told her I didn’t have the time to recover, and that I had a thriving cake business, two busy kids, and blah blah blah. But she was right; it was time. And I REALLY did think it was going to be the miracle cure to all of my issues.

pre-op to getting my tonsils removed

It was pretty brutal; I won’t lie to you. There was so much scar tissue built up from the years of countless rounds of strep throat, that it was all the way down to my vocal cords. I developed thrush during my recovery…UGH! And it took me 23 days to get cleared. The worst part? Once the tonsils were gone, the infections found new places to live!

ENTER: THE SINUS INFECTION PHASE OF MY LIFE

Now listen. I have always been snotty, and full of phlegm, and snorted, and cleared my throat, and coughed, and needed to blow my nose, and have always carried around a tissue in my bra. That FO SHO happened pre-tonsil removal, as did getting the occasional sinus infection, bronchitis, etc. diagnosis. HOWEVER, post tonsil removal, it was INSANE how often I was sick. And it was almost always the same diagnosis…sinus infection, bronchitis, double ear infection. Every so often it would include pneumonia too, be it regular, or walking. And of course I’d get a random diagnoses just to spice things up, like appendicitis, or an ulcer ON MY TONGUE, or when my skin started changing colors due to lime juice (another story for another day)!

me, all of the time

I felt like I couldn’t catch a break, and that one diagnosis just eventually rolled into the next. I even thought at one point, it was because we had moved into a condo that had black mold in it from too much window condensation. I mean, that was true, and they did come fix the mold problem. But I still stayed sick, even after that.

And I think right now is a good time to mention that I have tried everything, because for some reason when you share that you’re “always sick,” people love to suggest things that will make you better. And I was ALL EARS, as I’m the kind of person who will try anything to be/get better. I did elimination “diets,” removing dairy and gluten, going paleo, keto, Pescatarian, plant-based, and every other you can name. I didn’t drink alcohol for a year. I’ve done ALL of the oils, the diffusers, the humidifiers, the steamers, etc. I’ve drank all of the apple cider vinegars, elderberry syrups, teas, hot lemon waters, etc. I’ve taken all of the vitamins, supplements, probiotics, over-the-counter meds, prescriptions, antibiotics, etc. I’ve been to holistic doctors, sat in salt rooms for hours, been adjusted by chiropractors, and have done cupping, scraping, etc. If there’s a wives tale, I’ve tried it. If there’s a person who said they could fix it, I’ve seen him or her. I’ve tried to pray it away, and that hasn’t worked either. And many more I can’t even remember at this point!

enter: what i called, the trifecta

I was told my sinus/bronchitis/ear infections were probably caused by allergies, and that if I could manage those symptoms/attacks, I could probably prevent the infections from happening. I was told a daily regimen of Zyrtec, Flonase and an inhaler would drastically help. So that’s what I started doing…I’d take all three at night before bed, and then when I’d start to feel something coming on, I’d bump up the nasal spray and inhaler when needed. Because, as you may have guessed, the trifecta didn’t actually prevent anything, and I still continued to get sick.

But I didn’t think I was getting sick as often, so I figured the trifecta must be helping somewhat, so I continued it. Every day. Which led me to mid-October 2019, and a few things happened around the same time.
ONE, we decided to redo our life insurance policies, which meant a person called me and asked about my “health history.” She wanted to know EVERYTHING. And as I was trying to go through it all, I broke down. I got so frustrated trying to explain to her that I couldn’t give her exact dates for every illness for 38 years. I kept repeating, “I’m sick a few times a year with the same thing, and it seems like one just leads into the next.” Probably didn’t help get me a great rate, but whatever…it was the truth! Also, it took almost two hours to just do that portion of our call. That’s INSANE.
TWO, I finally decided it was time to get a primary care physician. One person who could look at my records and help me figure some things out.

Enter: Shelley, who was going to call me on my shizz

When I went to my first appointment with Shelley, I had A LOT of paperwork to fill out, of course. And as she looked through it, she started to quiz me on the Zyrtec/Flonase/inhaler trifecta. I explained to her that I was taking it because of my allergies which were causing my chronic infections, or so I had been told. Her response, “well, what are you allergic to?” Oh. Um. “Well, I don’t know! I’ve never been tested! My body is just symptomatic, and based on my sicknesses, that was the conclusion?” So Shelley said, “We should do a skin test and see! At the very least, you can start avoiding what you’re allergic to, or we can do a regimen of shots to help you work towards not being allergic to those things! But in order to do this, you’re going to have to quit Zyrtec for at least a week, but if you can do longer, I think you should.” I said “10 days?” and she said, “that would be great!”

As I walked towards the checkout counter to make the appointment for the skin test, I thought, ‘This is good! I’ll get answers, and we’ll get a plan going! How hard can it be to stop the meds anyway?! I’ve got this!’ And I was excited to move on to the next step in figuring some of this puzzle out! AND THEN CAME THE DAY I HAD TO STOP TAKING ZYRTEC.

Enter: I didn’t know i was addicted

Listen, I’m not going to act like I had ZERO CLUE it was going to be sort of hard to give up that tiny little pill. Because there were times that I would run out, and not get to the store the next day, and before I’d know it, I would have gone two days without Zyrtec. But I was so sneezy, and my eyes were extra watery, and I was struggling to clear my throat just enough, that it would remind me not to go another day without it, and to get my butt to the store for more. So two days is definitely the longest I had gone in YEARS, and might I mention, I took it at night before bed because it helped me fall asleep.

I had the day I was going to go “Z-free” marked on the calendar, and I was “okay” for two days. By day three, I fully thought I had the flu. By day four, I was struggling to even make sense. I had a television appearance, and remember apologizing to the hosts and producer saying, “I’m so sorry I’m so out of it. My brain is swimming in foggy phlegm, and I feel like I’m dying.” I know that sounds dramatic yall. But I was in full-on withdrawl mode. I was crying at the thought of how much I missed it, how it made me feel better, how it helped me sleep. I had no clue it was helping me with so many of my daily functions. So many of my followers said the SAME THING TOO., and here’s just one of the many messages…

SO MANY MESSAGES saying quitting zyrtec was the WORST and HARDEST

My nose was a faucet, I couldn’t stop coughing, my eyes basically watered around the clock, I felt nauseous, had terrible headaches, and I felt like my head weighed 100 pounds. One of my friends said, “I bet there’s a support group on Facebook for this!” And I started laughing, “No way, April!” But yall, I searched just to humor her, and sure enough there were nearly 1,000 people in a group about Quitting the big Z, one after another with similar stories of how hard it was, and how terrible they felt without it. Many said they couldn’t do it, and could only get to day 3 or 4. Others said they were down to half a pill a day, and tried every other, but couldn’t do it. And that was just ONE of the groups!

And listen, people keep asking “what’s so bad about taking it every day?! I’ve been told to!” Well, so was I! But from what I can gather (from Zyrtec’s own website), is that it’s always been meant to be a seasonal (read, TEMPORARY) medication, used when allergy symptoms are extra prevalent! The instructions even say, “may be given daily when allergens are most prevalent during spring or summer,” and “discontinue once your allergy symptoms have resolved.” I just get the feeling that it is NOT meant to be lived on day after day, year after year (per their own wording and dosage instructions). I also decided that I would never take another Zyrtec again, no matter what the tests revealed, based on how hard it was for me to quit it. Now, if you have year round, every day allergies, I’d discuss with your doctor if there are other options/better ways to tackle this. And for me, I figured the skin test would reveal lots of answers, and being Z-free would be worth it! So here’s where it gets SUPER interesting…

enter: the allergy tests

I go in on Day 11 (for the skin test) and I’m telling the woman how miserable the last ten days have been. How I couldn’t believe how terrible I felt without Zyrtec, and how something must REALLY be irritating me, and I can’t wait to see what it is! There was a small part of me that did think the test would reveal nothing, and I had expressed that to a few friends, and just how frustrated I was going to be if that was the case. Not because I wanted something to be wrong, but I just needed a concrete answer at some point. At least with answers, I can get a game plan, ya know?

She administers the skin test, and we wait. RIght now might be a good time for me to also tell yall that the skin test doesn’t hurt at all! I had hyped it up so much more in my mind than it turned out to be. The pricks are teeny tiny, and they roll or imprint 6-8 at a time on your arm or back. All of the pricks were done in less than a minute, I’d guess. So if the fear of the potential pain is what’s holding you back from getting one done, I’m here to say, there was no pain!

the pricks are so tiny, they don’t hurt at all!

And it turns out there was NO ITCHING TOO, besides the one control spot they do to make sure you DID quit whatever allergy meds you were on! Why no reaction, you ask?! Because I’m not allergic to anything! There were tiny bumps where a few of the trees, mold, and cats were (no food allergies whatsoever were detected), but they were the most mild reactions EVER. By the time the woman had typed up my results, you couldn’t even tell that a test had been done TO my arm because it was completely back to normal. “Do you need any anti-itch cream, ma’am?” she asked. “NOPE!”

I was so confused! If I’m not allergic to anything, then why have I been taking all of these meds? Why have I been getting sick forever? Why does my body hate me?! So I took to my Instagram stories (like I often do), and updated the peeps with this latest development. And how I was so frustrated to still not have answers. One person in particular saw it, and she wrote me a message, saying to get bloodwork done. I told her that I just had it done when I started seeing Shelley, and besides low Vitamin D levels, everything was perfect!

She said, “No, not that kind of blood work! You need an allergy blood work panel done.” I asked her “where do I go for that?” and she said an allergist is who I needed. I didn’t realize there were different blood tests, but now I know! She said something to the effect that she was just like me (chronic sinus/nose/throat/chest stuff) and that her blood work revealed that her streptococcal levels were extremely low. That out of however many are produced in the body, her’s wasn’t making a good chunk of them. She also said it was an easy fix, and after getting a few shots, she was so much better. She hadn’t been sick in 10 years!!!

i’m taking her to lunch tuesday to say thank you!

I got other messages telling me to ask for allergy blood work too, so THANK YOU to everyone who took the time to suggest that to me, as I had no clue there were tests besides the skin test! I honestly don’t know what I would do without people who are constantly watching out for me, and who advocate for me, even when I don’t “know” them! Yall are THE BEST! It was actually another IG peep who told me about her allergist, and I called to get an appointment with him. He was booked for about a month and a half, and the woman on the phone said, “we have a last minute cancellation for Monday if you can come in?!” I told her I’d make it happen no matter what!

self timer + too much time at appointments = ridiculous miranda 🙂

That’s when I met Dr. Patel with Asthma and Allergy Specialists in Matthews! She had me do an asthma test to rule that out, because I had also been told at some point, that I may have developed adult-onset asthma from all of the bouts of bronchitis. I was even on Singulair (maybe eight months ago) for two months to see if that would help after a particularly bad round of bronchitis I couldn’t seem to shake. Dr. Patel, after looking at my asthma test results said, “I don’t think you have asthma.”

She then asked me about my skin test, and I told her it revealed that I was basically allergic to nothing, at least not moderately or severely. She wanted me to get another skin test, just to make sure it was done correctly, so they did one that day in her office. I reacted even LESS to this skin test, and legitimately NOTHING even remotely reacted (again, except the control). She was surprised, based on how rough quitting the big Z was for me, but I basically demanded a blood test (and knew to call it an immunoglobulin test per my IG friends), and she said, “we’ll do one, and you’ll come back in a couple of weeks for the results! Maybe it’ll have an answer?!”

second skin test

She sent me off to the lab that day! And this is the question I get the most: what is the name of the blood test that I got? I don’t know that it necessarily has a name; I just know it’s a bloodwork panel that an allergist HAS to recommend. It’s a test for your immunoglobulin levels and it’ll test your streptococcal and pneumococcal levels essentially. It is NOT a regular blood work panel, and your allergist is the one to refer you and read the results, I believe. I headed to a place over in Elizabeth near the hospitals, and it took less than two minutes to draw my blood! Apparently I have great veins and high-flowing blood?! At least I have THAT going for my body (in addition to good skin, and tiny wrists LOL)! I left the lab that day thinking, ‘well, I’ve done what I can at this point and now we wait.’ FOR THREE WEEKS.

Enter: The dental part of this medical mystery

Let’s go back to that initial appointment with Shelley…another thing she asked me about was my dental health. I was ashamed to tell her it had been far too long since I had been to the dentist because of a traumatic experience I’d had years prior. I had a root canal and a crown put on, but I had repeatedly said to both the endo and the dentist that my tooth was still in pain. I’d even been back to have my tooth shaved down/bite adjusted, thinking that was the issue/would fix it, but it didn’t. And I guess at some point, I just felt like I was a burden, and that I wasn’t being believed anyway, so I stopped mentioning it. Even though that tooth still hurt ALL OF THE TIME.

When Shelley told me, “your teeth are important, and so are you,” I called and made an appointment at Waverly Dental (which is part of Friendly Dental). Despite the fact that I hadn’t been in too many years, it wasn’t nearly as bad as I thought it would be (probably because the staff is so friendly :)), and my teeth held up pretty well, all things considered! Except I had a huge infection under that root canal tooth 🙁 I had a feeling that just maybe this infection was a part of the reason why I was always sick? And I was SO MAD at myself for letting it go on this long.

just here for the jokes!

I started root canal therapy almost immediately at Novick Endodontics, and I’m not going to lie to yall, it’s intense. It took two appointments at two hours each appointment, with 2-3 people working on me at a time, to get it done. They basically have to drill through the crown, through the filling, into the roots, pack it with antibiotics, fill the tooth back up, and temporarily fill it. Then you go back in a few weeks to have all of that removed, and them do the root canal again, and hope that the infection disappeared. My jaw still hurts from having to keep it open for so long! BUT, I will admit that I did feel better after the procedure AND I can chew on that tooth again! I still need to get the permanent filling put in it (or replace the crown) at my next dentist appointment in a week or so!

I needed some fillings done on a few of my other teeth during this time too, and I got them knocked out in two appointments! I will never miss a cleaning again, and have vowed to be diligent about my dental appointments in the future! If you know you need to go to, I can’t recommend Friendly Dental enough (especially the people at Waverly Dental), and they will NOT shame you, I promise! Your teeth play a big role in your overall health, and you deserve to know the whole picture! And it helps if you try to laugh your way through some of it by making silly collages 😉

so much dental work, so little time to be like Kourtney Kardashian

enter: the results of the blood work panel

My three week wait was up, and it was finally time to have my follow-up with Dr Patel! Of course, the familiar feelings of doubt started to creep in…’what if she doesn’t find anything? What else can I even do at this point?’ But I went into her exam room, sat down, and she came in with my paperwork, and I could see lots of handwritten notes jotted down. I took that as a good sign. She sat next to me and said, “We found the culprit!”

YALL. IT TOOK EVERYTHING IN ME TO HOLD IT TOGETHER.

I said, “Really?! What is it?!” And she showed me on my paperwork, that I had pneumococcal antibody immune deficiency. In layman’s terms, our bodies have 23 pneumococcal antibody types, and 22 of mine were practically at ZERO (or below low average). And the one that wasn’t, was only 0.1 higher than the below low average number. She said, “you have the bloodwork of a 65-70 year old woman, and a typical person would have more antibodies touching a shopping cart at Harris Teeter!”

I asked her why I didn’t have any of these pneumococcal antibodies, and the way she put it is, when we’re vaccinated as babies, those vaccines help us through life from getting sick, be it very serious diseases and infections. And while plenty of the vaccines worked and the titers are showing up in my bloodwork (thankfully!), for some reason, my body didn’t respond to certain ones given, or they wore off very quickly. Two of those specific vaccines help develop pneumococcal antibodies, and guess what those antibodies help prevent?! All things related to your sinuses, lungs, ears, etc.!!! I WAS SHOOKETH, YALL! It’s like my whole life was finally making sense! After she left the room, I lost it…

i couldn’t stop crying!

And the best part?! It’s a somewhat easy fix!!! All I need to do is get those vaccines again (they have updated ones now) to boost my titers, and recheck my blood work to see if they are effective this time around or not! So although it’s an easy fix, it’s not a guaranteed one. But Dr. Patel did say that if this works, I will feel like a new woman, and I will feel SO MUCH BETTER! So the plan is Prevnar 13 (which I got a week ago), then Pneumovax eight weeks after the Prevnar. Four weeks after the second vaccine, I’ll get more blood work to check my levels again. (Keep reading for the update)

step 1 to the rest of my life! not to be dramatic or anything 🙂

Obviously, I’m PRAYING for this to work. My hopes are definitely up, but I’m trying to remain cautiously optimistic. I don’t want to get too excited and then have this not work at all, but I keep repeating that it’s time for something to go right. I’ve put my time in. I’m exhausted. I NEED THIS TO WORK. So I’m just going to think positively and hope that the laws of attraction (and modern medicine) work in this case.

So that’s where I am today! No matter what happens, I’m grateful for answers. I knew I wasn’t crazy, but I didn’t know what else to do if the bloodwork didn’t reveal anything. I’ll keep yall posted as to whether or not the vaccine boosters work! And right now might be a good time to mention that I’m not up for an anti-vax discussion about this. I’m 38 years old, have read LOTS on the topic, and obviously if other methods worked, they already would have because I’ve tried them all. I feel like these are my only hope at this point, and I’m very excited about the possibilities. And I just can’t believe that anyone would think that these two vaccines are more harmful to me than the amount of meds I’ve been putting in my body for 38 years to combat the sicknesses I’ve chronically been getting. So I beg you, either be encouraging and supportive with your comments, or say nothing at all. There is no changing my mind here, we can agree to disagree, and it takes zero energy to keep scrolling if it bothers you. It’s my body and my choice, just like you get to decide for your body with your choices! I really do appreciate your kindness and well wishes!

UPDATE: I’ve had my second vaccine, Pneumovax, which was hard to find after COVID-19 hit, because a lot of people were looking for it to boost their own lungs. But I finally found one with who else….Shelley!!! I waited my required amount of weeks, and then EVERYTHING SHUT DOWN, and I wasn’t allowed to get my blood drawn to check my titers, for months 🙁 I finally was able to get it drawn last week, and now I wait for the results to get sent to my allergist, Dr. Patel, and get results at my telehealth appointment next week! We’ll then know if I’m in the normal range or not!!! STANDBY! I am feeling better, so we shall see!

Another UPDATE: I just got the results back from my bloodwork, and out of the 23 pneumococcal antibodies, 21 of them are now in NORMAL RANGE!! Some of them are very low normal, but they can still get higher, and I’ll probably take another round of both vaccines in a year, just to be sure! This is incredible news, and I’m so excited!

Because the truth is, covid could’ve killed me. I’m one of those immunocompromised people, where my lack of pneumococcal antibodies specifically made me susceptible to lung-related infections. I couldn’t be around someone with a simple cold without landing in the urgent care many times. So me pushing for answers couldn’t have come at a better time. I actually may have saved my life by not giving up! And for that, I’m incredibly proud of myself. I can tend to give up too easily when things seem impossible. NOT THIS TIME.
And I’ve been asked how I’ve felt since the shots took effect over the last six-eight months…INCREDIBLE/LIFE CHANGING! I still haven’t taken a Zyrtec since I quit the big Z, or used my inhaler or nasal spray. I don’t take Singulair anymore either. I am completely drug free in that sense and it just feels amazing! I haven’t gotten sick, besides a small cold, and for the first time in my life, IT STAYED AT A COLD! That’s never happened…if I got a cold, it always progressed! And I haven’t gotten covid, which may be the biggest miracle of all!

I’m simply sharing my experience so that if others are battling the same issues, and feel like they’ve tried it all, that this may just be the culprit in their bodies too! Or if you know someone with similar symptoms, please share this post with them! I want everyone to know there are options, and to never stop searching for answers. ADVOCATE until you are satisfied! And I may have gotten some part of the very technical medical terms incorrect here and there, but you get the gist! If you have any questions, leave me a comment, and I’ll do my best to answer them!

To summarize: if you, or someone you know, is just like me, and wants answers
1. go to an allergist
2. ask for an immunoglobulin panel to check your pneumococcal and streptococcal levels (do NOT take “no” for an answer)
3. go for the bloodwork and the allergist will read the results
4. if your levels are low, get the prevnar 13 and/or pneumovax shots
5. recheck your levels and see if they’ve come into the normal range
6. feel like a new person

This is what I want to stress, and I won’t mince words. I don’t know why FOR YEARS, not ONE doctor said “have you ever thought about getting your titers checked?” Not ONE suggested an immunoglobulin panel. Why? I don’t know. Maybe it’s because it’s not very well known about? Maybe it’s because they make a lot more money keeping me (and others) sick? Maybe it’s both? But it can’t continue to happen to people like me, and I will die on this mountain! Hope this post helps you in some way! xoxo

mirandaincharlotte@gmail.com

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  • Kayla January 21, 2020 at 8:14 am

    I’m so happy that you finally have answers and can’t wait to see your journey to getting better.

  • Jen January 21, 2020 at 3:07 pm

    Cannot wait to hear the final outcome of the boosters. All things crossed for all the good news!!!

  • Susan Hendricks January 21, 2020 at 4:48 pm

    So glad you got some answers but sad that you went through so much to get them!! Hope you are starting to feel better!!

  • Louene Waters January 21, 2020 at 8:41 pm

    Wow! What a story, Mandy! I had no idea. So sorry you’ve had such a struggle for so long. I pray that this is really your answer. It appears that the right people were placed in your path finally. My new DIL has multiple illnesses and I’m wondering if your story can apply to her so I’ll have her read this. Prayers for your continued healing! Love to you!

    • mirandaincharlotte@gmail.com January 24, 2020 at 6:35 am

      thank you so much!!! please share far and wide! no one should have to beg for simple blood work, and i truly believe it should be standard once a pattern is formed. but alas, that doesn’t seem to be the case, and i’m not sure why it isn’t? but if we can get the word out, people can at least know what to ask for and advocate for themselves!!!

  • Monica January 23, 2020 at 1:33 pm

    This is my 19 year old son to a tee! I’m getting him an allergist appointment right away! This makes a lot of sense and I am so hopeful for you! Thank you for sharing

    • mirandaincharlotte@gmail.com January 24, 2020 at 6:34 am

      i’m so happy that in my sharing, i can hopefully save people many years of going through the same things i did!!! please, will you keep me updated on your findings?!!!

  • Kelly Yale January 23, 2020 at 8:22 pm

    Literally CRYING from JOY!

    • mirandaincharlotte@gmail.com January 24, 2020 at 6:33 am

      awwwww! thanks! it’s been a helluva ride! grateful for answers…hoping the vaccines work this time!

  • Bonnie January 27, 2020 at 12:54 pm

    Thank you sooo much for sharing your story! I saw you on my Insta. I’ve had health problems throughout life, with things getting worse in the past 5 years. Same thing with tests coming back pretty good, which yes is great… but soo frustrating in the way you said, that you just want answers to be able to do whatever is needed to get better! I now sit here waiting for my allergist appt, because I have to go off the allergy meds my primary dr. put me on as well. Fortunately, I haven’t been on them too long at this point.

    The hard thing for me was still having hope though. I’ve had sooo many appts already trying to figure things out, and know all too well how you start to feel and are made to feel, even by people who are supposed to be professionals, while the search goes on. I have really been afraid to have too much hope in this upcoming appt, but I now feel better about it! Hope is a beautiful thing to inspire and share in as humans, what a beautiful gift you’ve given me. I will continue to pray and include you in my prayers for continued healing, that we may both, along with whoever else comes upon this, be finally recieving the answers we’ve been waiting on. Lots of Love Beautiful!

    • mirandaincharlotte@gmail.com January 28, 2020 at 7:46 pm

      oh my goodness bonnie!!! YES, i want you to hold on to that hope! i have felt like doctors have failed me over and over again. why didn’t anyone refer me to an allergist until now? why didn’t anyone say “let’s run bloodwork” after my 29282289th sinus infection? why, why, why?! but at the end of the day, i was willing to fight harder than they were, i suppose, and i know you are too. if you have to print off my article, DO IT! don’t be afraid to demand what you want and need because we are the customers and they still work for us! will you please keep me updated?!

  • Liz August 6, 2020 at 5:02 pm

    Hi! I came across your post since it was shared in a local FB group for someone else battling terrible unknown allergies. Now that it’s been a few months, how are you feeling? Did this resolve your issues completely or at least significant improvement?

    I’m definitely leery of vaccines after one of my children was vax-injured, but I do have another child with chronic allergies that we haven’t been able to figure out. It’s not to the level of having sinus infections, but allergy testing hasn’t revealed anything and the pediatrician wants us to try Zyrtec and Flonase. Like you, I’m not comfortable with him taking these every single day for the rest of his life, even if it works. I’m considering more allergy testing, and now thinking about requesting these antibody tests as well. (We’re patients at the same practice you mentioned!) Thank you for sharing your story and please let me know how you’re doing!

    • mirandaincharlotte@gmail.com August 11, 2020 at 5:31 pm

      Hi Liz!

      I feel a million times better since the shots. I don’t have a constant runny nose anymore, or a nagging cough. I don’t take ANY medicine at all, and that’s incredible for me! What I’d say is there is zero harm in getting the immunoglobin antibodies test done (it’s a simple blood draw), and just see what his levels are! That way you decide if it’s worth the vaccines or not? For me, I was sick for 38 years, and I feel like that was detrimental to my overall health, not to mention all of the things I missed out on being sick so often. I would’ve done anything for my mom to have done the testing for me when I was younger, but of course, she had no clue it was even an option! But at the minimum, get the answers, and go from there, is my best advice!

  • Kasedra Simpson December 8, 2020 at 2:58 am

    Hello Miranda,

    Reading this helped me feel that I’m not alone. I relate to your story so much; and my heart goes out to you for what you have gone through. I always remember being a healthy child; never really sick. No one would have guessed that by age 18 my new norm was a constant state of health issues and pains.

    At 17 I suffered from a vicious cycle of reoccurring strep throat, which led to my tonsils being removed. It was around that same time the doctors found out I was allergic to penicillin limiting my antibiotic choices. Like you; the illness seemed to migrate away from any treatments I received, which led me down a path of chronic sinusitis/bronchitis, double ear infections, eye infections, and pneumonia.

    I was curious if you have experienced any of the following symptoms as well: chronic fatigue, brain fog, memory issues, depression, mood imbalances, chronic joint pain, migranes, acid reflux and at times even vision troubles. I’ve also recently (for the last 2 months) had both if my partoid glands swell to nearly the size of golf balls, hard as rocks and no decrease of size.

    Anyhow, I’ve dealt with this for so long and it often feels like all of the doctors and specialists I see agree that there is an issue; but seem to want to pass the buck as they can’t accurately diagnose what it is. I’ve been through so many infection treatments that I’m sure I am resistant to many antibiotics.

    In October my eyelids started swelling almost shut and both glands, and under my ear (behind my jaw) swelled as mentioned above. I feel like I’m in a constant state of flu-like symptoms. These glands are currently still swollen. My face is visibly deformed (enlarged around the jaw); and only now has my pcp taken me seriously enough to refer me to an allergist/immunologist.

    I did the blood panel, and all 23 serotypes were .1. I got those results today and they were able to give me the pnuemovax this very afternoon. I’m currently at the point in your story that I’m playing the waiting game to see if there is any improvement. Like you, I had nearly given up all hope; but reading this has helped me believe that there may be a light at the end of the tunnel.

    Thank you SOOOO much for sharing your personal story. It really touched me and I needed it more than you know.

    Love and light,

    Kassi

    • mirandaincharlotte@gmail.com December 13, 2020 at 12:52 am

      Oh my goodness, Kassi!!! YES, I had migraines, acid reflux, severe memory problems, TMJ, floaters in my eyes, and fatigue (in addition to the constant strep, sinus infections, pneumonia, ear infections, and all the things you mentioned)! I swear it was all because of the antibody deficiency that I was FINALLY diagnosed with! I got the two vaccines at the beginning of the year, and THANK GOD for the timing, because if I were to contract covid before my antibody levels got in the normal range, it could’ve killed me. So far, so good! I haven’t gotten it, and actually, besides a little head cold a few months ago, I haven’t been sick in almost a year now! It was so exciting to get a cold that didn’t progress into anything more…that’s never happened to me! Will you please keep me updated? Are you getting the prevnar 13 as well? I got that in addition to pneumovax!

  • Lindsey March 10, 2021 at 12:58 am

    My son is 13 and we have not had any answers. I took him to a sinus specialist and now they want to remove his adenoids and thin out his nasal passages because he has severe sinusitis. I don’t know if I should go ahead with the solid grey or get the allergy blood tests done first.

    • mirandaincharlotte@gmail.com March 10, 2021 at 1:02 am

      Get the immunoglobulin panel done right away! It could be as simple as some shots to literally change his life!!! It is easy, fast, and much more cost effective than surgery!

    About Me

    About Me

    Hey Peeps!

    I'm Miranda, and I'm formerly lots of things (I sold dumpsters, fro-yo, and car parts to name a few), but most recently I was a cakery owner of Got What It Cakes. I'm a mom of two daughters whom I call my "minis,” and the wife to Joshua, whom I call "Stud" (yes, he's even in my phone under that name). Most days you can find me oversharing about my insane life on my InstaStories, in a segment I call "carpool confessions." Follow along as I decide what to be when I grow up, while I navigate my other love, the queen city of Charlotte! I also tend to go by "Mayor Miranda," and am awaiting my key to the city ;) Read More

    xo, Miranda

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