Misdiagnosis

Its Multiple Sclerosis; its Mono; it’s Lupus; it’s in your head; You’re just out of shape; its fibromyalgia; you need to see a psychiatrist; its depression; you are perfectly healthy; you are being a little dramatic; your labs are all normal; its anxiety; you’re allergic to something; you have asthma; you have sleep apnea; it’s Lyme; Lyme doesn’t exist in California; it’s a false positive; you don’t have Lyme; you were already treated for Lyme; you don’t have it anymore. Are you stressed at work? Is your employer downsizing? You have brain lesions associated with MS or Lyme; Everyone has lesions on their brain; what do you want me to do about it? Lyme never goes away; it’s best that you not know what’s wrong with you; When were you in Lyme, Connecticut?

All words I’ve heard from medical professionals who took the Hippocratic oath to “do no harm”. 

It’s too late

In 1993 I was bitten by a tick. I didn’t recognize it at the time soon after I broke out into a rash on my left foot, became ill. Little did I know this would be the end of my life as I knew it. Dealing with minor body aches and rashes I thought I kept exposing myself to something I was allergic to. Years later, I read an article about Polly Murray, the unassuming housewife that launched the investigation into what came to be known as Lyme disease. She described her symptoms that were eerily the same as mine. I begged my doctor to test me for Lyme. “It doesn’t exist” I was told. If you had Lyme you would have had a rash at the bite site. Three years after my tick bite a different doctor finally agreed to test me. Positive, my test was positive! I thought, “finally I know what this is and we can end it I can have my LIFE back! Simple antibiotics and I’m cured!! Yeah!”. I was so relieved. I was given 24 days of Trimox. But no one ever told me it was too late. My infection at this stage was now chronic.

On going Issues

I continued to have issues with mysterious rashes, debilitating fatigue, paralysis, slurred speech, migraines, joint pain, cardiac issues, loss of eye sight due to uveitis where I had to have steroid injections directly into my eyeball to save my eyesight. I now have long term retinal damage as a result. At this time I was an avid runner and started to experience dizziness, balance issues and slurred speech during my runs. At times it would take 1-2 days to feel better. At one point I suffered from partial paralysis and was forced off work for a couple of weeks. My mom was so worried and frustrated that doctors couldn’t find what was wrong with me. Lumbar puncture, blood work MRI revealed Epstein Barr and I was told that my previous CDC positive Lyme test was a false positive. My mom eventually drove me to Mexico to have a battery of tests done. There I was diagnosed with vitamin deficiencies, Meiners disease and given vitamin shots that my mom gave me weekly.

I remember at one point in my care I was incredibly frustrated with constant Dr appointments and hearing the words “your labs are normal”. I angrily looked at my doctor in the face and asked him “at what point do you look at my volumized medical file and start to connect the dots? My medical file is not normal!”. As a Latina I was raised to respect authority so I had always been the “good” patient but at this point I was beginning be become disgusted with our system of medical care. My doctor knew at this point I had had enough. He asked me to come back in a week. I did. He sat me down and said matter-a-factly “You are living a good life, you are productive and have a normal life, I think it is best that we not diagnose you and just continue to treat the symptoms as they arise”. What I make of this statement is he knew. He KNEW I had been battling tick-borne illness but couldn’t tell me likely due to clinic regulations and CDC requirements.

Short Reprieve

I went into remission for a few years and was able to enjoy a somewhat normal life.  I got married, had a baby.  I managed to continue on with my education and obtain my MBA, conquered Mt. Whitney and completed a mini triathlon. I took this opportunity to travel abroad, completed yoga teacher training, exploring the world. I took every opportunity to hike as many mountain peaks and trails as I could. This was my passion. This is my happy place.

My entire life I was very active in sports, an avid runner, biker, hiker. I went from being able to hike 20+ miles in a day to recently barely being able to walk upstairs to my room. Since then my health has been in a steady decline and each time I relapse it takes longer to recover.

Relapse From Hell

In January 2019, I relapsed one more time and it took me nearly 6 months to dig myself out the Lyme grave. I began having severe debilitating chest pain, balance issues, cognitive decline are just some of the symptoms I tried to ignore and doctors told me were nothing. The chest pain, heart palpitations, high blood pressure, I felt as if a heart attack or stroke were looming yet all my labs were “normal”. Stress test, CT scans, MRIs – normal…. all normal. Confusion sets in. Am I going crazy? I can’t think. I can’t speak, my thoughts aren’t processing to my mouth. Half way through my drive to work I realize I don’t know where I’m going. I forget what year it is. Twitching, seizures, and involuntary muscle movements such as my arm flailing out, my leg kicking out like a rag doll, blurred vision, falling down the stairs, severe sleep disturbances and vivid dreams, depth perception is off and driving now feels like a risk. I feel like a totally different person. I am not the same calm person that friends and colleagues know me most for. Anxiety is amplified, I begin having difficulty breathing and just taking a shower took all my morning energy, pain is relentless and debilitating. Blow drying my hair was now like climbing Mt. Whitney.

I visit my neurologist begging for answers. He orders an MRI, “MRI is fine. This report doesn’t excite me, lesions are not consistent with MS” he says. Yet when I read things in the MRI report like flair, lesion, demyelination process, Lyme disease, stroke…. How could this be normal? I don’t understand. I am starting to truly believe I am going crazy. All my labs are normal …its nothing…Its costochondritis…its Tietze syndrome, it’s in your head… Its stress… blah blah blah…. At this point I am beginning to wonder if what my doctors say is true and I seriously consider checking myself into a psychiatric hospital. I feel like there is no other alternative.

Soon after this I broke out in a rash again and went to see a dermatologist who upon examining the rash said “its either Lupus, cancer or Lyme”. She did a biopsy. Results are in. I have now been told specifically what strains of Lyme I have. This is now the third CDC positive test I received. It took a dermatologist to break the mystery. She explains to me that Lyme does NOT go away yet she cannot treat me because I have already been treated. I now have 26 years of infection and now a chronic Lyme patient and literally fighting for my life.

I gave my primary doctor the lab results. The one who kept insinuating I just wanted free time off work. His hands were trembling as he read the positive CDC lab results. He said “I don’t know anything about Lyme, I know it started in Lyme, Connecticut. When were you in Lyme, Connecticut?” My mind is racing with confusion. Seriously?! How is it possible that someone who went to medical school and practicing for 20 years and who has been telling me I’m crazy and I need a psychiatrist be so ignorant to Lyme? Now fear sets in. No one can help me. No one! I’m stuck. I lay in bed and cry night after night and pray to God, I tell him “its ok to take me. I can’t live like this anymore”.

Advocating For Myself

With my most recent Lyme results I left my doctors office and went downstairs to their records division to ask for my complete file and copies of everything related to dermatology, neurology, GI, etc. Basically my entire file. I wanted everything related to Lyme so that I could start putting the pieces together. This baffled me that I had to even do this because I had been a patient at this clinic for nearly 30 years. They had my entire history and had it all electronically but failed to even bother to look at my history anytime I went in to see if they could find something in my history that could shed some light on my symptoms.

This seemed to have launched a red flag with the corporate office and now my doctors were guarded, and seemingly embarrassed that I had to get all of the information myself and show them all of the documentation that supported my Lyme diagnosis and denial of my request to see an infectious disease doctor.

Steady Decline

Since January 2019 my health has taken a drastic decline. At this point having a better understanding of what was going on in my body I realize western medicine will not and cannot help me due to limitations with CDC guidelines, ignorance, ego, corruption in the medical and insurance industry and the politization of Lyme.

My research leads me to seek alternative therapy but finding out the cost of the different therapies astounds me. Therapies that insurance will not cover. Lyme sufferers, including me, are spending tens of thousands of dollars, wiping out 401k’s, savings, mortgaging their homes, their parents homes. Going broke, losing jobs, becoming disabled, losing friends and family. Now all you have is faith. Faith that whatever alternative medicine therapy you chose will heal you. Blind faith.

This tick-borne illness treatment industry has become a multi billion dollar industry and yet no treatment is guaranteed to work. The variables of everyones illness are so different and complex there is no one size fits all treatment. Everyones treatment path is different based on what your pathogen and viral load is and how long you have been infected. I am now finding myself extremely confused as to what is the best route to take to heal. I feel like I am in a glass carnival maze, slamming into invisible walls, lost in trying to understand this disease and what will heal me. What will save me?

You don’t look sick

The depression that goes along with this disease is daunting and no one understands how truly lonely this disease leaves you. You no longer want to or mostly cant socialize because your energy is needed just to make it through a work week. While friends and family think you are being antisocial what they do not know is that you want to hide and mostly you don’t want to explain to anyone what Lyme is for fear that people think you are lying because “you don’t look sick”. It is a very lonely place to be. For those who suffer with a better understood visibly chronic illnesses, cancer or serious injury people quickly rally around, bring you food, raise funds to cover expenses, send cards, flowers and come visit. Tell someone you have tickborne illness….You get a blank stare…crickets. It soon becomes apparent who your true friends are. Social media posts about my illness as I try to bring awareness to this disease go unnoticed and un “liked”. Not one person reaches out to see how you are doing. Not even your family. You are labeled as dramatic, attention seeking, hypochondriac or worse crazy.

To add to this issue I have done a fair job of trying to keep it together so my employer doesn’t know but, it’s starting to become apparent that I am not well and things at work seem tense which just compounds the anxiety and pressure to perform. Being under scrutiny each day takes its toll. It’s hard enough to be fighting to live but add the complications of trying to fight to stay employed adds another level of undue stress. What most people don’t see is that I really do love to work as most of us do as it gives us purpose. I did not obtain an MBA so I could sit home on my ass and rot.

Processing Grief

Dealing with Lyme is much like dealing with death of a loved one.  You go through 7 stages of grief:  Shock, denial, anger, bargaining, depression, testing and acceptance.  Then, it seems you cycle through it again, and again.

This processing of grief over and over again becomes emotionally exhausting and dealing with doctors who dismiss your symptoms ends up pushing you to PTSD. To this day I refuse to see a conventional medical doctor for fear of being told again that I don’t have Lyme or I am just under stress.  

For those stuck in this cycle of grief, my advice is you must find your way out. Surround yourself with positivity and a good support group that will uplift you. Staying in this grief cycle could cost you your life. If you are a caregiver, take the initiative to push him/her in this direction. You will be thanked later.

For me I found meditation, breath work, reading motivational material and connecting with my Lyme community helped immensely to change my mindset. The Lyme community is vast. A group of complete strangers reaching out to one another, oddly, you soon become family and lift each other up at various times throughout this wild journey.

Finding an LLMD

After years of mistreatment and misdiagnosis I finally made the decision to find help at Keck Medicine of USC. Here I found an amazingly kind doctor who listened. He referred me to a sleep specialist where I soon had an in depth sleep study. After discussing my results and Lyme with my sleep specialist he strongly advised that I MUST treat the Lyme or my sleep disturbances and neurological issues would get worse. 

In my quest to understand everything about this disease I found a documentary Under Our Skin and Under Our Skin 2: EmergenceI researched one of the doctors featured in the film and soon booked my flight to Washington D.C. 

At the time that I saw my PA and doctor my nervous system was so fragile, weak and I was in immense pain on a daily basis. Inflammation was chronic and I could feel heat radiating from my skin every day. The headaches and confusion in hindsight I now know was brain inflammation. I went in for blood work and my lab panel for tickborne pathogens came back CDC and IgeneX positive with multiple strains of borrelia, babesia, Tick Borne Relapsing Fever, and Bartonella. My immune system was in chaos.

Hope

I can honestly say that finding a competent LLMD has changed my life.  I finally feel that there is hope that I will live a normal life once again.  While treatment has been difficult I finally feel that I have a chance at life again.  I now choose to live a more purposeful life as I work to advocate, educate and support those who are suffering from this horrible disease with empathy and compassion.

I am now an Education Ambassador with the Global Lyme Alliance and have worked with the Center for Lyme Action to advocate for the TICK Act in Washington D.C.

I choose to live life once more! And what a wonderful life I know it will be. To those who are still navigating this nightmare of a disease, I say please don’t lose hope but do take charge.

If you have questions or need support I welcome you to email me at livelifenotlyme@gmail.com or leave a comment on this blog.

“My mission in life is not merely to survive, but to thrive; and to do so with some passion, some compassion, some humor and some style.” ~ Maya Angelou

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