Hello. This is Amy's husband, Randy. I get asked the question all the time, "How is Amy doing?" What I could probably say each time is "She doesn't feel well, but her perseverance is strong". In reality her body is constantly battling something. It is hard to put into words what she has to deal with on a daily basis. At this point in her journey it is too much for her to fully look back and go into detail about all she has been through. And honestly, she doesn't focus on the hard things for long. She has always been this way, which has been a blessing. One day she will tell her full story. Right now you will find bits and pieces of it within the words she writes.
I went to look for some photos to show hard days, but we only have a handful. Even after all the procedures, appointments, emergency room visits, tests and therapies she has had over the last six years, we have very little documented. We have no photo or video that shows the seizures or bell's palsy from Lyme attacking her brain and nervous system that used to be a daily occurrence. So many days were giant struggles to even achieve comfort or stabilize her body that using a camera to capture even the good escaped us. I wish we had more photos and videos because they would show just how far she has come and how debilitating these diseases are.
My wife is focused on doing all she can do to get healthy and trusting that God will use it and He will do the rest. She never expected this sickness to last this long or become this severe and she doesn't expect to be sick next year at this time. I am thankful for her sound mind and strong spirit.
Amy currently has been diagnosed with Chronic Neurological Advanced Late Stage Lyme disease and most of the co-infections that come with it along with having CIRS (mold/biotoxin illness), Mast Cell Activation Syndrome and Dysautonomia / POTS. Just one of these as a standalone illness is life altering. Her current worst Lyme co-infections that we know of are Babesia and Bartonella. Her body can’t tolerate certain types of mold and its byproduct mycotoxins at all. It completely shuts her body down. This is not an allergy! It's more like being poisoned where her body cannot remove the toxins. Additionally, she shares many symptoms of people who deal with MS, Parkinson’s Disease and ALS because of how Lyme Disease has damaged and attacked her nervous system and brain. I am sure she could have a page full of diagnosis if we wanted to pursue them. Her list of symptoms that she deals with regularly is extremely long and they rotate and change frequently. It’s horrible as she deals with things that many diseases would only bring on near death.
Amy has an enormous story to tell. She could write a book and I pray she does one day. Six years ago she experienced symptoms that Mayo Clinic diagnosed as POTS and Dysautonomia. It is very true she has these and deals with most of the things that Google will bring up for symptoms, but this diagnosis didn’t explain a lot. It had a lot of holes as she continued to decline in health and with what her body could handle.
About four years ago she was diagnosed with CIRS (Chronic Inflammatory Response Syndrome). CIRS is also known as mold illness and is triggered by exposure to biotoxins. Gene tests show that Amy has a gene that makes it very hard for her body to detox the toxins mold gives off. Looking back, we believe that the previous house we lived in may have had a mold problem as Amy’s health began to deteriorate when we lived there but we didn't connect the dots until recently. When she was diagnosed with CIRS we put extra effort into identifying any mold that could possibly be in our new home. We did find a couple of issues that would not be good for anyone with a susceptibility to mold illness. We had those issues professionally remediated by a company that specializes in CIRS. We had to get rid of most of our belongings that had been in our other house because we also learned that dead mycotoxins that mold gives off are actually worse than live mold for Amy. It imbeds itself into all of your belongings making them nearly impossible to clean and one of the reasons she was constantly reacting to things in our home. Sadly, most homes and buildings have a level of mold and mycotoxins that is just too high for Amy to handle. It is not uncommon for CIRS victims to go to extremes such as living outside in a tent for a year or two while trying to heal as the foundational protocol for mold sickness is to avoid toxic molds.
Two years ago Amy was diagnosed with Chronic Neurological Lyme disease that is late stage. Lyme disease and CIRS often go together because they mess with the same detox pathways in your body. Lyme can live dormant in your body for many years and then when your body and immune system are stressed by mold the Lyme comes roaring to life. And likewise, Lyme can bring a high sensitivity to mold. A little over six weeks before Amy’s sickness began on January 9, 2016 we were in Florida where Amy got a bunch of strange bites that lasted for weeks after we got home. It’s possible this is where she got the Lyme that attacked her nervous system and activated things that were already hiding in her body. We will never know the sequence of causations.
Mast Cell Activation syndrome also goes hand-in-hand with all of her diagnoses and is nothing like an allergy. She gets near anaphylactic so often and we don’t always know the reason. She can even just react to detoxing too fast or killing Lyme too quickly. Currently she can only tolerate 15 foods including water and salt. Mast cell is utterly debilitating and scary to live with as you constantly play Russian roulette with everything you put in your mouth, on your skin or breathe in. And yes - she has done DNRS and a similar brain retraining program.
She has found it to be really hard to share symptoms with those she knows as many don't believe or even acknowledge much of what she is going through. The sad truth about these diseases is that they are so often misdiagnosed, misunderstood, undermined, and thought of as psychological problems. As her husband, I have had to guard my mind and ears from these thoughts. We’ve tried to be really careful about what is spoken over the situation. We know this is a very real thing. Very real and very sad. I’ve read many stories of similar journeys online and we know many who are dealing with the same enormous challenges as this sickness impacts a lot more than just your health. It’s a lonely world as these people are so often treated as outcasts and are forgotten. God has given us a passion to love them and minister to them.
Amy is determined to see herself as healed and not to reflect on the trauma of the past seven years. She spends each day not focusing on symptoms but rather on what her body is doing for her and the wins she had that day.
-Randy
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