There I was standing on the corner of 23rd Street and 6th Avenue in NYC. I had just gotten out of the subway by my office in my neighborhood of over 10 years and I was totally and completely lost.
I had gotten out of that Subway thousands of times over the years and I knew the neighborhood like the back of my hand. But today I couldn’t remember how to get to the post office, just a few blocks away. I remembered the cross streets, but I couldn’t remember how to get to them.
I started to freak out and pulled out my phone, turned on my GPS, and typed “post office” into Google Maps. I then walked there via GPS.
I was baffled. How in the world could I not know how to get somewhere in my own neighborhood? Somewhere I had been to many times. I mean I was in my early 30s! How could my memory have deteriorated so much??
It wasn’t the first time, it was just the worst time. For the past few years I kept saying to my mom on the phone, “I keep forgetting the strangest things”. And my mom would say, “I know what you mean, I’m getting old and forget things all the time!” To which I would respond, “I’m in my late twenties (when the memory challenges started) what’s my excuse??? I’m not getting old! And I’ve always had a memory like an elephant!”
At this point I had been to more doctors than I could count and had an endless list of symptoms.
First I had asthma like symptoms where I would experience a shortness of breath when doing physical activities that I had done for years with no trouble. But I tested negative for asthma.
Then, I remember being in Alaska with my boyfriend at the time and he jumped over a stream and when I got to the stream I paused and looked at it in confusion. I couldn’t remember how to jump over it, which was strange as I grew up in Alaska, was a total tomboy and had jumped over hundreds of streams in my life!
Then I started having bizarre and unexplainable anxiety attacks where my heart would race uncontrollably. Sometimes it would happen when I was sitting in my apartment doing nothing. Then all of a sudden I’d feel like I was being chased. Or feel like I was going to die.
There were times I’d be out at a social event talking to someone and I couldn’t remember the last thing they said, for the whole conversation. I’d pretend I remembered and try to follow along as best I could. But then the person would look at me funny and I realized they knew I couldn’t remember what they just said. Based on their reaction my guess is they thought I wasn’t paying attention because I didn’t care, which was the furthest thing from the truth.
As time went on I tried not to find myself in one on one conversations. If I did find myself in that situation I would find a way to leave the conversation as quickly as possible so that I wouldn’t have to be embarrassed by them thinking I wasn’t paying attention.
Then, there was the uncontrollable anger. I could usually feel it brewing in my body before it came to the surface. Again, there was typically no reason for it. It was like a dark cloud surrounding my mind and body. When I felt it coming I would usually not leave my house for fear of the repercussions. But sometimes I had committed to something important and didn’t have that option.
One time I had committed to filming a friend’s event for International Women’s Day and I felt the anger so intensely that I called my best friend and asked if she could meet me there to film for me after I set up the equipment. Before I could leave I had gotten into an altercation with someone else working at the event. My friend who was hosting the event got upset with me both because of the altercation and because she felt like I wasn’t following through, because I had asked someone else to film for me.
When any of these things would occur I didn’t even know how to begin to explain what was going on for me other than to say, I wasn’t feeling well. Which became a statement I made all the time and one that people grew tired of. I only wished I knew why I didn’t feel well so I could give a more clear reason.
People around me started saying they thought I was depressed or had lost faith in myself. But I knew neither was true. I knew something was very wrong with my body and my brain.
Eventually, due to the lack of memory, extreme anxiety and the uncontrollable anger, which could pop up at any time and often did at the worst times, I stopped going out and began isolating myself.
On top of all of this I had what felt like flu symptoms almost every month, although I couldn’t remember them. Fortunately, I talked to my mom on a weekly basis and she kept saying to me, “You’re always sick. What’s going on with your health?” And I’d say, “I don’t know what you’re talking about I can’t remember the last time I was sick…”
I had horrible night sweats off and on where I would drench my sheets and wake up in a puddle of sweat.
Increasingly when I would close my eyes to go to sleep I would see horrible things like slitting my wrists or walking down the beach and stepping on glass that gashed my feet open and I could feel the pain in my body. It was bizarre to say the least. Sometimes I couldn’t make these thoughts go away, no matter what I did.
Then, the negative thoughts began. I felt like I had become such a burden on society and that I shouldn’t be here anymore. I couldn’t get out of bed until almost noon each day. I was sleeping 16 to 18 hours a day. I was having these horrible visions of killing myself that I couldn’t control. I couldn’t function like a normal human being. I was living off of public assistance. So why should I be here?
During this time I lost my adventure travel company, which I had successfully run for 8 years and built up to the number one company of its kind in NYC. I lost my multi-family home and rental property. And I ended up living in my 10′ x 15′ office on a convertible sofa and showering at the gym, for over 15 months.
Even though I had been to more doctors than I could count, with a whole host of symptoms, nobody had any answers. Every time I showed up they were like, it’s Serena again with another long list of symptoms… They treated me like a hypochondriac.
“I Had to Find An Answer”
On top of all of this, a few weeks after forgetting where the post office was, I had what felt like an intense flu for an entire month, but each week I had completely different symptoms. I was totally delirious and I felt like I was going to die. At the time I lived alone and I had no one to take care of me. It was then that I knew something was horribly wrong and I HAD to find an answer. I cried and asked the Universe for help as I had hit rock bottom and didn’t know why.
A couple of weeks later I went to an internet marketing conference in Washington DC and by Fate I was sat next to a Lyme Literate Medical Doctor (LLMD) at a dinner that a friend had given me his ticket to. A type of doctor that I didn’t even know existed, because if I had, I would have been looking for one!
8 years prior I had been bitten by a tick in Kent, Connecticut and had severe neurological symptoms within 10 days of the bite. I researched my symptoms and researched tick bites online and I had all of the classic symptoms of Lyme Disease. Long story short, during that 8 year period I was tested for Lyme several times, at my request, and all of the test results came back “negative”, according to my doctors. And when I pushed for treatment for Lyme Disease they refused it.
I said to the Lyme Literate Medical Doctor that I had always suspected I had Lyme Disease, but my doctors all told me that I didn’t. He then asked me to write my health history going backwards to the day I was bit and to send him that information along with my Lyme Disease test results.
As I wrote out my health history I systematically watched my life fall apart in conjunction with the tick bite in 2005. When I finished the spreadsheet I cried as I had never seen the info written down all together like that before and I knew I had to have Lyme. I then sent my health history and my tests to the doctor.
His response was, not only were my test results positive, and that my doctors didn’t know what they were talking about because there’s so much controversy around what a positive Lyme test result is, but that my symptoms were also classic of neurological Lyme Disease.
8 years later I finally had a diagnosis from a credible Lyme Disease trained doctor and a reason for the chaos that my life had become.
I laid on my bed and cried harder than I think I’ve ever cried before. I cried because I felt vindicated. I cried because of all the years of my life that I had lost. I cried for all of the things that I had built and created that I lost. For the friendships lost. For the business relationships lost. 8 years was a long time and a tremendous amount of loss.
I’m now 5 years into treatment for Lyme Disease and Co-Infections, the worst of which is Babesia, and I am just now starting to get my life back. My short term memory has returned slowly over time. I was able to write this blog post, which is nothing short of a miracle. You’d know what I mean if you read the other incoherent 20+ attempts over the past 4 years… I’m sleeping 7-8 hours at night. I rarely have anxiety attacks. My ability to do physical activity without wheezing or being so fatigued that I can’t move has returned. The bad dreams have diminished. I’m able to control my anger better. I’m in a positive mental space more often. And I rarely experience flu like symptoms.
I call this whole experience my “Near Alzheimer’s Experience” as I had all 10 of the top 10 Alzheimer’s symptoms, and BAD. Fortunately, I have recovered enough to come back and tell my story. To me, it is no different than coming back to tell about a near death experience, because I was almost brain dead….
I have since found studies and statistics that support my experience including this one:
“A new study from Drexel University summarizes: “The reaction of the
immune system to Borrelia coated with biofilms is what leads to
Alzheimer’s disease. Killing these organisms before they arrive at the
brain or before they create biofilms is exceedingly important.”
Source: Journal of Neuroinfectious Diseases
Graphic Courtesy Of: LymeStats.org
The reality is, if the doctors were properly educated, if this had been diagnosed in the first couple of weeks and had I been properly treated, I probably wouldn’t be writing this right now.
All of this fuels my passion to help others avoid what I went through, as this story is the story of millions of people around the world who have symptoms but no diagnosis, doctors who don’t believe them, friends and family who don’t understand, and often lose faith in themselves.
Symptoms are not normal. PERIOD. Especially symptoms that are ongoing and/or repetitive. They are the body’s way of telling us that something is wrong. So don’t let anyone tell you that you are symptoms are “normal“, or “a part of the aging process”.
Because of what I’ve been through my focus is now on helping people to get a proper diagnosis and proper treatment, no matter what the disease or cause. My experience and the experience of countless others has been that getting both of these things often takes a systematized approach not taught in medical school.
If this story resonates with you or someone you know, I want you to know I’m here for you, I understand what you’re going through and I will do the best I can to support you in every way I can think of.
Through sharing stories, creating online education, hosting live events, and by developing an online community that is a positive space to support your healing. Because you deserve to live a healthy, symptom-free, productive life. A life that is full of joy and passion. One where you make decisions from a place of power and health (wholeness).
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Sending you a tremendous amount of Love, Light, and Gratitude on your journey to Chronic Wellness! <3
Founder & Chief Knowledge Seeker