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I have had to do a lot of investigating since I became ill, investigating that doctors will not do and possibly do not know how to. When my doctor introduced me to dynamic neural retraining system , I was resistant at first.  Another rabbit hole to go down, I thought. I was only safe in a car at that point and spent my days driving around like an animal looking for safety after being hunted by its predator. It is exactly how I felt. There was no safety, the entire world seemed to have become off limits. I was sensitive to every home, store, hotel, train , article of clothing I had, food I tried to eat, rain and even the car I was driving. I was alienated from people and devastated by their indifference. I was hopeless.

Diagnosed with chronic inflammatory response syndrome, mast cell activation syndrome and lyme disease , I became an environmental “fugitive” for some time, running from another  potential visit to the er in anaphylaxis and isolated from society. I walked alone with illnesses no one believed . I no longer cared if I survived by the time I received DNRS, I resisted for months.

Until, I started watching the videos in my mothers car on my phone. I was unable to process much, due to “low level brain inflammation from mold”, but what I did made me realize maybe there was more to these illnesses than the trigger. I wrote about that here .  Trauma, it was trauma that caused my illnesses. Trauma kept the limbic system in a state of panic, sending sickness signals, when faced with a trigger, lyme, mycotoxin, foods, for a while also chemicals. The limbic system , this primitive mechanism in the brain could not tolerate any “dangers” and in an effort to keep me safe, actually wound up making me sick. It all made sense now. I had trauma. Who didn’t?  Something was missing though.  I knew there had to be more for me.

In November of 2019, I began tapering the last bit of klonopin I had left – .50. In February I was finished.  Throughout the taper I had symptoms that I thought were CIRS symptoms. They were exactly the same symptoms I would get when entering a home that my limbic system felt was dangerous. I was in withdrawal. When I came off completely, I could see all the thoughts associated with the illnesses I had as well as the very pronounced symptoms. I began to get sensitive to foods again, more sensitive to some environments, everything increased as well as stand alone withdrawal symptoms.  I began researching and asking others of their experience with klonopin (benzodiazepine).

About 5 years ago I began tapering 2.0 mg of klonopin. I reached .75  two years later and cold turkeyed it. Unable to withstand it I went back up to .50. Damage was done. When I came home from a trip where the cold turkey was done, I was ok for two months, in fact I was better than ok. I had no thoughts in my brain, I was calm. What I didn’t realize is my brain had been hurt by this withdrawal.  My health began to deteriorate. I began hallucinating, in and out of losing touch with reality, derealization, depersonalization, sweating, losing the ability to walk and talk, raging, crying, always in brain fog, sound sensitive, light sensitive, and unable to leave my bed.

Again, no one , including me , put together that benzos had done all of this. I was being tested for parkinson’s disease, until someone suggested a lyme disease test. I was sure I finally had my explanation of the last 20 years with that test. It was time to see and llmd. Lyme disease treatment made me very sick and I then received the CIRS and MCAS diagnosis. They were right. My body was reacting to food and mold, and I did have lyme, babesia and bartonella in my blood. Many people do. Many people eat histamine rich foods and all people are able to live in homes. Why was I getting sick from this?

I have been going to doctors for a long time showing them my belly, it was always distended. I had gone complaining of symptoms like air hunger, heart racing, my hair falling out, insomnia, depression , terrible anxiety, fatigue and dozens of other symptoms. Today , I realize these symptoms were withdrawal. I only took one dose of first xanax and then klonopin for the last 20 plus years at around 7 am each day. By 3PM I had my symptoms.  Tolerance and withdrawal were affecting me and no one knew.

I am now off all benzodiazepines . My limbic system became for awhile panicked and symptoms,  intensified  but I will keep retraining until fully healed. All makes sense now, my brain was not hurt by external triggers, but by internal, causing it to overreact and be in a state of hypervigilance.

 

Stefanie