My Diagnosis With an Incurable Illness
My diagnosis with an incurable illness may be the best news I have had in over a year. I had been on a roller coaster of unexplained illnesses that had sent me spiraling into a wave of depression! Getting a diagnosis, even an incurable one, has been liberating! Doctor after doctor sent me home without any diagnosis or explanation for why I was feeling so sick all the time. Over the last fourteen months I have gone through six different doctors trying to get answers. It wasn’t until recently that two of those doctors discovered the culprit.
Mast Cell Activation Syndrome and Reactivated Epstein-Barr Virus
You have no idea how liberating it feels to finally have a name to call my illness. FINALLY my internal medicine doctor said to me, “It looks like all these other doctors have been very thorough in looking for the horses. Now let’s look for the zebras.” I knew in that moment that I had finally found a doctor who was willing to help me. After fourteen months and six different specialists, I learned that I have been suffering with Mast Cell Activation Syndrome and Reactivated Epstein-Barr Virus. Both of these diagnoses are rare and unusual, and they do not show up in standard blood tests.
A Little Backstory
Let me give you a little backstory. In January of 2020 I became extremely ill with what my primary doctor later assumed was Covid. At that particular time there was no test for Covid, so we really can’t be sure. Over the next four months I was sick with fever, sore throat, extreme fatigue, and headaches. FOUR MONTHS! I couldn’t even drive five minutes down the road without falling asleep behind the wheel of the car. My doctor ran several blood tests and could not find anything wrong with me, so he sent me for a sleep study and I was diagnosed with Severe Sleep Apnea.
I did end up with a positive ANA test, which was an indication that I was dealing with something that was autoimmune. However my undiagnosed autoimmune disease was not easy to find. Eventually my ANA tested negative again, and my doctor explained that sometimes people have an autoimmune response to a viral infection that goes away in a short period of time. Great! So why wasn’t I feeling any better?
One Symptom Led To Another
By the time April rolled around, I felt completely defeated. Blood test results were not giving us any answers, but I knew with every fiber of my body that there was something wrong. I just needed a doctor who was willing to listen instead of passing me off as crazy. It felt like every day I began experiencing a new symptom, and one symptom led to another. Extreme fatigue as well as joint and muscle pain was beginning to effect me, so I was referred to a Rheumatologist who diagnosed me with Fibromyalgia. I knew it was more than that. I knew without a shadow of a doubt that these doctors were missing something. My health was becoming desperate.
I Began To Journal
I felt like I had to become my own advocate. Nobody else was fighting for me, so I had to come up with answers on my own. I began to journal everything about my day including what time I woke up, went to bed, what I ate, and how much water I drank. A pattern started evolving, and I realized that food (especially wheat products) was effecting me. My doctor ran a Celiac Disease test on me, and it also came back negative. Luckily my doctor was willing to refer me to an immunologist/allergist when I requested. At this point my doctor was willing to send me anywhere because he was just as confused as me.
Sudden Adult Food Allergies
After having more and more blood work done, my new allergy doctor worked with the Mayo Clinic to discover that I had sudden adult food allergies. I am forty-five years old, and I had never suffered from food allergies before. Suddenly I had developed adult food allergies out of nowhere! Blood work showed iGg antibodies for a type one food allergy to wheat, avocados, and melons. I was prescribed an EpiPen and told to avoid those foods because they were triggers for what they eventually diagnosed as Mast Cell Activation. End of story.
At the time I was happy to have an explanation for my symptoms. However, the more I thought about it, the more I realized that this didn’t explain everything. Yes I could tell that wheat products made me feel bad, but at this point I was dealing with symptoms that didn’t make sense. I didn’t know much about MCAS, but I still felt like there had to be more.
More symptoms were evolving almost daily. I began to get extremely dizzy upon standing. My brain felt so foggy that I could barely hold a conversation without forgetting what I was saying during mid sentence. At times, I could literally see a word in my head, but my mouth could not form the word to speak. I was still suffering with a lot of joint and muscle pain. The fatigue was debilitating even after sleeping with a bipap machine. My eyesight began to get very blurry, and I was experiencing ocular migraines. My muscles were always clinched, and I couldn’t relax. I had random muscle twitching and spasms, plus I could hear a whooshing sound inside my left ear. And I began to experience severe anxiety that was triggered by sensory overload. These were symptoms that I just didn’t believe could be explained by MCAS.
One Last Try
Someone eventually told me that I should try to get an appointment with an Internal Medicine doctor. At this point I had already seen five different doctors, but I figured I would give it one last try. Honestly I expected this doctor to dismiss me just like everyone else had already, but she didn’t. She spent nearly an hour with me in the exam room asking me questions and listening to me. She was truly listening. By the end of the appointment she told me that she was going to look for the zebras. I almost cried right then and there. I knew I had found the doctor who was going to help me, and I was right.
She sent me to the lab for more blood work, and she promised me that she would not stop until she found answers. Within a week she had diagnosed me with Reactivated Epstein-Barr Virus (EBV). She explained everything to me, and she told me that my iGm and iGg antibodies were so extremely high (nearly 800) that it was obvious that I had been suffering with this for quite some time. All those months that I was stuck in bed with fever and flu-like symptoms… THAT WAS MONO! At the age of forty-five, I had mono!
You May Also Have EBV
Ninety-five percent of the population has been infected with the Epstein-Barr Virus. Most people are initially infected when they are young. EBV is the virus that causes Mono, and even if you never had mono, I assure you that you may also have EBV. For most people EBV lies dormant in your body forever. But a small number of people are not so lucky. Those of us who are not so lucky end up waking this monster of a virus somehow. It no longer lies dormant, and the virus begins to replicate and wreak havoc inside your body! Doctors aren’t certain about the exact cause of EBV reactivation, but they do know that it can be triggered by illness. We still believe that I was sick in January of 2020 with Covid, and the EBV was reactivated and led to Mono in the months following that.
MY DIAGNOSIS WITH AN INCURABLE ILLNESS
There is no cure for Mast Cell Activation or the Epstein-Barr Virus. MCAS and EBV are pretty rare, and it is believed that both are under-diagnosed. Doctors believe that there are MANY others who suffer with the same thing as me, but most doctors do not know to test for it. I had never even heard of MCAS or EBV, but I feel so blessed to have found a doctor who was familiar with my constantly growing list of symptoms and knew what to test me for. The medical community is finally coming around and learning more and more about these stealth illnesses.
A Treatment Plan
This is where things begin to get a little tricky again. Usually a diagnosis will leave you with a treatment plan. In this case, it is trial and error. With the MCAS, I basically will have to be on allergy meds forever and keep Benadryl and my EpiPen close by. The trick is to avoid anything that may trigger an MCAS flare. At this point we know that certain foods are triggering my MCAS, but that doesn’t mean that new triggers will not show up as well. However food is not the only thing that can trigger MCAS. Some people end up in a flare simply from smelling a candle burning, or washing their face with an ingredient that their body sees as a threat.
The treatment for EBV will be a little more complicated. The hope is that I will be able to strengthen my immune system so that it can do its job to send EBV back into dormancy. Right now my doctor is treating symptoms with medication, and we are focusing on fixing some vitamin deficiencies as well. EBV is a virus, and it can’t be treated with antibiotics. You have to allow your immune system to fight off viruses when they take over your body. Unfortunately, my immune system is not strong enough to do that with a virus that replicates so quickly.
THANKFUL FOR ANSWERS
I am still learning about MCAS and EBV, and I learn something new everyday. Now I am having more good days than bad, but I’m not going to lie. I never know how I am going to feel from one day to the next. EBV has caused my immune system to fail me, so I am unable to avoid getting sick if I am exposed to something. I have had Covid twice, the most recent being nearly four months ago in October. That time it was very mild compared to last January, and luckily I still carry Covid antibodies. Having a compromised immune system in the middle of a global pandemic is pretty scary.
I am very thankful for answers. I am also very thankful for people who support me during this challenge. Being sick for this long has made me feel like I’m being left behind. I am thankful for the few people in my circle who go out of their way to make sure I don’t feel that way. It took me FOURTEEN MONTHS to get a diagnosis. I do not intend on it taking another fourteen months to be well. I am ready to take my life back, and I am holding on tight to those people and to God, who is walking beside me right now.