“May was the month my healing sparkled” — I wrote that on June 1st.
Soon after I wrote that I went on to collapse, literally.
June felt like a heavy hauler truck running over me repeatedly, crushing my bones, muscles, joints and all the organs in between.
Everything hurt at a level 8/10 on the pain scale. I ran a low grade fever and was barely able to eat except for sips of homemade chicken soup for the majority of 3 weeks. My history of autoimmune disease led me to think that I was experiencing something related to crohn’s. However my body was not acting like I was having a crohn’s flare. Yes my stomach hurt but it was a new and different type of pain.
I assumed that my immune system was flared and over-reacting to something because it was the only thing I could think to make sense of the extraordinary pain I was in. I curled up in my pj’s for most of 2 weeks, I took pain and nausea medicine which really did not do much to decrease the pain. At some point I even went on a steroid taper. I watched brainless TV and tried to decrease all stress in hopes that my immune system would relax.
Later I would learn that it was not an immune flare. Blood work showed that I was actually fighting an infection during that time. However, what infection was I fighting? What is it that has left me so incredibly sick? That is the question of the season.
This summer I have been to the doctor somewhere between 7-10 times. Most of those times my dear parents have driven me because most days I am too sick to drive.
It has been a summer of medical tests, pain, illness and I am still very sick. I had a few weeks in July when I started to feel better and I assumed that everything was going back to normal. I was so happy to get back to normal. Then one day it was like I tripped over a snag in the carpet and landed back on my face only to be run over repeatedly by that same truck that ran over me in June.
For so many reasons we had hoped to have answers by now. I have completely avoided writing because I didn’t think I could write until I had an organized post with a solid answer to give you. Writing is one of the few things that actually does make me feel better. So today I decided to forget about the need for a perfect post. I don’t have the answers.
I can tell you that it is almost 80 degrees in the Atlanta area and I am wrapped up in layers, shivering with chills on our screened porch. Earlier today I was going to ride to the grocery store with my parents. We need food and it would have been an easy trip. I put on a very comfortable outfit and braided my hair, I really thought I could go but instead I collapsed onto the floor in an outrageous amount of pain. I curled up for 10 minutes trying to decide if I could get back up and go because I wanted to go, I needed to go. But I couldn’t. I knew that I could not even get to the door, much the less walk around a store. I texted my parents to let them know.
You would think that this type of pain would send us rushing to the ER but that is what we have been doing all summer. I have had so many medical tests you can’t imagine. Just last Thursday my dad, The Hubs and I spent the day/night at the ER while I got a CT scan, Spinal Tap and copious amounts of blood work drawn. When everything came back normal the doctors were in dismay. They referred me to a new neurologist. I will see her in September.
This summer I have been told that I have numerous things ranging from Meningitis to to SIBO (small intestinal bacterial overgrowth) to Fibromyalgia to Arthritis to Lyme Disease.
One thing we know for sure, thank God the leukemia is in remission. Another thing we know is that my lab tests keep coming back normal. If you look at my blood, there is no reason for me to be so sick.
This is one of the main reasons that Lyme and/or its co-infections is a likely cause of why I am so sick. Lyme Disease is called the great imitator because it imitates other illnesses. It is very typical for Lyme patients to have illness that migrates all over their bodies from week to week with normal lab tests (exactly what is happening to me).
Other reasons that make Lyme a likely culprit: I got sick with flu-like symptoms in June and I had a red rash at the base of my hair line that extended up into my scalp. However, I have learned that the rash is not a necessary qualifier with Lyme.
We live in a heavily wooded area but I have lived in wooded areas during many stages of my life. I used to camp often and I have been bitten by ticks several times since my childhood. There is a chance that I have had undiagnosed Lyme for years. Or this could all be new since this spring. I did find a dead tick in our bed one morning last April and my husband was bit by a tick during one of the weeks in June when I was so terribly sick (the doctor called in a preventative antibiotic for him given what I was going through).
Testing for Lyme Disease and its co-infections is very confusing and challenging. For one thing, the testing is highly unreliable. I am not making this up, in many states the doctors legally have to tell you that the test is unreliable before they administer it. Another reason is that the CDC approved test relies on the body’s immune system to make antibodies to a limited strain sample of bacteria when there are actually hundreds of strains of the bacteria.
In my case, I don’t really make antibodies because of the immunodeficiency. I hardly make enough antibodies to keep me from catching things like the common cold. My immune system simply cannot make enough antibodies to even respond to this test.
Several Lyme Literate Medical Doctors have directed me to a test that looks for the DNA of the Lyme bacteria in my system. This DNA test also looks for 8 co-infections of Lyme. It is possible that a different bacteria in the Lyme/chronic infection family might be making me sick.
I do have good days and I don’t look sick so that further confuses people. Over the next few weeks I will be doing more tests and seeing more specialists. I am exhausted and in a lot of pain. This is hard on us.
I am not asking for your pity. Please do not feel sorry for me. I have a home and a bed and people who love me. I am blessed. I believe that God will bring me through this. I don’t think He brought me this far just to forget about me. But I am very weak and pain is brutal to the soul.
My request is that when you think of me, please pray that the doctors figure out what is wrong with me so that I can get on the proper course of treatment. Please pray that faith and courage would be restored to me. Please pray for my husband; this has been incredibly hard coming on the heels of the leukemia relapse. We are tired and we want normalcy badly.
Thank you ❤