Whose Lyme is it Anyway?

It’s mine. And it has been quite the journey. With the CDC announcement of a significant increase in diseases from insects THIS SUMMER, my goal is to bring awareness to help prevent others from going through what I did and guidance in the right direction to those who have been struggling with unknown symptoms.  I want to give encouragement to those who have been frustrated with unanswered diagnoses as well as education to keep your body at its healthiest state possible (as well as provide some health hacks along the way).

MY STORY

It was a lovely fall day in September, I had an India Missions Trip planned. The weather was beautiful and I was living life to the fullest, trying to be outside every second I could soak up. I remember getting sick.  A ‘mini flu’ in addition to full body joint pain to go along with it. I figured the inflammation from being sick enhanced whatever activity I did to cause my joints to be sore. I thought this was something that happened because I was ‘getting older’, ‘over working myself’ or ‘engaging in too much activity’. I may have felt this way because this is what I was told from others, including doctors. Working in the health system I hated these answers for patients and I wasn’t going to be an exception. I truly believe that every ache and pain we have can be prevented and can be corrected. So, I went to my doctor in the hospital where I worked. I went bc at this point it had been six weeks and my joints continued to ache. I ‘knew’ it was because I used my hands constantly in my profession but was starting to get a little desperate. Now anyone in the healthcare system knows not to go to the doctor unless it’s an absolute emergency. Because more times than not you’re going to waste time and money on BS (yes, I’m still a little salty). Anyways, he did a super quick assessment and told me to rest and up my ibuprofen to 800 mg (I am give or take 100 lbs, this is a great way to not only ruin my kidneys but put a band-aid on the issue verses correcting it). I then was billed for this <10 minute appointment and went home a little more broke and discouraged. I got a second opinion from another traditional medicine doc with a different prescription to ‘band-aid’ the problem before I sought out functional medicine. With functional medicine, they dug a little deeper and were at least able to find some deficiencies which we started to address with supplements. I wanted to know why I had these deficiencies and what was causing it? Does everyone have some type of deficiency they don’t know about and if so how were they all still functional and I felt ill? I took the supplements but overall, felt that same.

MY SYMPTOMS

I slowly started giving stuff up in my life. My friends were able to go out late and have a good time and function fine the next day but less and less my body just couldn’t handle it. They could eat and drink crap and wake up the next day feeling 100% better than I did. Even one alcoholic beverage or not getting >8+ hours of sleep made me feel like I had full onset of the flu, strep throat, increased pain and fatigue that seemed like it was 3AM at all hours of the day.

Once participating in marathons and triathlons, I stopped running as I thought I reached an age where I was too old to run without pain or injury so I started biking more. I used to participate in centurion bike rides however got to a point where riding 1.5 miles to the library gave me so much pain and fatigue I had to rest in bed the remainder of the day. (We all have passions and exercise was one of mine. With an Exercise Science Degree and Doctorate in Physical Therapy, movement meant so much to me on a day to day basis.  It was exciting and fun and rewarding.  So initially, losing this part of my day was hard to grasp.)

As my lifestyle declined, I started having ‘new normals’ and forgot what I was capable of or what others were capable of doing in one day. I tried Pure Barre and 9Round but the extreme onset of pain and fatigue these hour long activities left me for weeks to come made me unable to do my job. So I decided to stick with yoga. That seemed safe and healthy for this point in my life. Now, I did get to the point where even that was painful and I was unable to perform. But this was at the lowest point where everything seemed to make me feel worse and was no longer enjoyable or worth it. Walking to my car felt like climbing Mount Everest. Going to get groceries was out of the question. The pressure on my organs from lying in bed left me awake all night grunting and groaning, the extreme weakness and fatigue in my neck where I physically couldn’t lift my head off my pillow, the nerve pain that radiated through my limbs felt like I was continuously being electrocuted, the unbearable pain I experienced from water on my skin whether I was washing my hands, showering, or drinking was so intense. Everything in my body became hypersensitive. My throat was always red and sore, my bones throbbed and felt broken, my lymph-nodes were visibly swollen and there were days moving my eyes or jaw brought on significant migraines. When I was working, there were times my joints felt like they were about to dislocate to the point my boss had to drive me home. There were days I spent in bed and had to mentally force myself to sit up in bed to not get pneumonia. On multiple occasions I slept 16 hours at night and then took two naps during the day. I just couldn’t wake up. Yet couldn’t feel rested. My skin constantly hurt so I had limited clothing items I could tolerate wearing. Between not being able to tolerate much and showering being painful, I had a lot of stinky days. I knew I had to eat but everything upset my stomach and when you have the flu and are constantly hurting, the last thing on your mind is forcing yourself to the kitchen to eat a ‘clean meal’. I just couldn’t figure out why I was feeling this way. I tried eating different things, sleeping for different time lengths, meditation, telling myself this wasn’t real and that I wasn’t in pain. It was so hard being in social settings because all I could think about was how I needed to go sit or lie down because of the pain. Although it was easier being alone, I was also lonely. As much as I tried to find joy in the midst of it, I was sad. Nothing helped. I had to quit everything I enjoyed including exercise, traveling, outings, working, and any relationship I had. I accepted I was dying, because I surely wasn’t living.

NEURO LYME

Then there was the mental component. I used to believe I was mentally and physically one of the toughest humans around. (I grew up with a dad who constantly told me how tough and strong I was so even at 5’3, how could I not believe I was superwoman?) Before I got sick, I believed I could endure and overcome anything that came my way. I slowly and gradually developed ADD, anxiety, mood swings that could change within minutes, difficulty recalling anything I did, difficulty finding words, extreme short-term memory loss, sequencing problems, difficulty with decision making or remembering what I was doing at the very moment I was doing it. I know we all may have this happen occasionally but mine was constant and worsening by the day. My brain felt like New York City at rush hour. I had brain fog to the point I felt like I was locked out of my brain. I couldn’t think or comprehend what was going on. Everything was hard. I found myself walking around in circles in my house not knowing what I was doing or what to do.

A DAY IN THE LIFE

I had more bad days than decent ones. But without any rhyme or reason, I did have decent days. Days where I still had brain issues, pain, and feeling as if I was coming down with the flu. But those days gave me hope that things were improving because my symptoms were minimal. These days didn’t last long and I was back in the cycle of not being able to function or have quality of life. I appreciated my decent days and tried to go back to my old ways of living…however, I was paranoid that I was going to do something wrong to flare up whatever was attacking me from inside.

Over time, I started getting an idea of what made me sick (exercise, not sleeping or eating healthy, weather changes) but I didn’t know what was causing it entirely so I started having a lot of fear of going about my day.  I was walking on glass, anticipating getting knocked down completely and having another flare up if I didn’t do everything just right. I felt like I developed these flu-like symptoms a few times each season and remember when I realized this wasn’t normal. Again, my normal started becoming so skewed. It took weird looks from other people for me to remember not everyone felt this way. It was so easy to go into self-pity or ‘woe is me’ mode at times as every day for going on two years, I woke up believing, hoping, anticipating that today had to be the day I was better, this had gone on long enough. All to experience everything all over again. Think of having the worst flu ever…plus an injury…in every part of your body…while pulling an all nighter…every day…for over a year… now two years. I’d like to say a week of that is long enough to endure for anyone. But when there’s no end in site, what’s a girl gotta do to keep plugging along?

This consumed my life. My days were filled with trying to prevent whatever was going on to cause a flare-up. New symptoms were constantly popping up. I became so fearful of everything. I couldn’t find answers anywhere. Friends started asking me if I was depressed or if I tried talking to a counselor. So I tried. No one understood what I was going through because I ‘looked fine’.  I felt like a frail 90 year old (nothing against 90 year olds) just struggling to breathe or move my hurting bones or joints and quite frankly, was surprised myself when I looked in the mirror and didn’t see a 90 year old crippled lady. If I knew I had ‘an outing’ that I had to attend, I had to dedicate an entire week before and after to being bedridden in order to fake being ‘okay’ for a few hours. I was wearing a mask that I was okay because it was too confusing to explain. I was confused myself. I would fight the pain when I was out and then would come home, crash on my bed, and cry.

MY DIAGNOSIS

After multiple hours and days and months of research, as well as getting advice from other healthcare professionals I knew and trusted, I diagnosed myself with Chronic Fatigue Syndrome and recurrent Epstein-Barr Virus (EBV). I had mono when I was 17 and for some reason I had it all over again and it wasn’t going away. I know that viruses can turn into cancer or more detrimental diseases down the road so I was determined to find the best of the best to fix this before I continued on this downward spiral. I found a doctor out in NY and headed that way to finally get healed.

My doctor out there was a holistic doctor who worked with chronically ill people and was featured in Self Magazine as one of the 27 curative docs in the U.S.

I told him I had chronic EBV and right away he told me about 85% of the population has EBV and that we had to figure out what was causing mine to come out of it’s dormant state and continually flare up. Within 5 minutes of me telling him about my symptoms he bluntly said, “you have Lyme disease”. I laughed and said “no I don’t. I have never had a tick bite.”

That is when I found out ticks can be smaller than your smallest freckle and don’t always result in the infamous bullseye rash. What was even more terrifying was that I found out not only is Lyme disease contracted from a tick, but also carried in fleas, spiders and mosquitos. For someone who’s family uses her as a mosquito repellent, I quickly found it easy to believe this diagnosis. (Plus, he reported to have been treating Lyme for the past 30 years which also helped his case.)

I learned that when an insect bites you, not only do you have the possibility of contracting Lyme, but within minutes you can contract a whole slew of bacterial, viral, and parasitic infection that will rock your world (I was diagnosed with five of these co-infections).

This is what makes it so tricky. Depending on which type(s) of ‘co-infections’ someone has and where in the body they settle, can make symptoms across the board look differently for everyone. Lyme Disease is also called ‘the great imitator’ because it can be misdiagnosed as Multiple Sclerosis, ALS, Parkinson’s, Rheumatoid Arthritis, Dementia, Alzheimer’s and many other diseases.

I think of all the work I did to finally get a diagnosis and it makes me think of others who don’t have a health background and put their trust in everything their doctor says. One lady I met confided in me that she was thousands in debt as well as in organ failure because of all the doctor visits and medications prescribed over the years with no improvement in symptoms. The sad truth is doctors aren’t educated on diagnosis and treatment of these types of auto-immune diseases (this was admitted by some of my closest friends who are physicians as well as western medicine physicians who turned to practice functional medicine). Now having a diagnosis, I gave traditional medicine another chance.  Unfortunately the only ‘solutions’ they could give me was yet again another band-aid solution of prescribing me Lyrica, Cymbalta, or other pain medications that would not fix the problem, but instead cover-up the symptoms and potentially cause further issues down the road.

CHRONIC LYME DISEASE

When Lyme disease is left untreated (like mine was) it turns into chronic Lyme disease which continues to wreak havoc on your body causing all types of allergies, sensitivities and other types of illnesses. The little spirochetes (Lyme bacteria) attack the synovial lining of your joints, burrow in your bones, organs, nervous system, muscles, blood stream, and are even able to cross the blood-brain barrier which means they are able to spread into your brain.

My NY doctor found that I had an infection in my brain, joints, and heart. Meaning whenever I exhausted my brain or heart (stress, exercise, thinking, etc…) my symptoms flared up. These little boogers create a ‘bio-film’ around them and can hide which make antibiotics ineffective in chronic Lyme. They are time consuming and tough to kill. But I am told and have hope that I can kill them.

OUR BODIES

We may all have some type of parasite, virus, infection in our bodies but when our body is strong enough to fight it, it may go unnoticed. It’s when we start having more infection and more co-infections in our body that it takes over our immune system and our body starts fighting against us. This is when problems start to occur.

Since this is Lyme awareness month I want to share different symptoms that co-infections may cause so that you can be aware of them in yourself and loved ones. I will share preventative measures on how to avoid this from happing, educate you on how to keep your body at it’s healthiest in order to avoid being a great living environment and host for nasty infection.

WHERE I AM AT NOW

I wish I could say I am completely better but I can’t quite say that yet. I am told it is a gradual process and one that takes patience and perseverance. I still have a lot of bad days, but these bad days make me appreciate the good ones more than I ever would. It made me learn to reflect and live at a slower pace of life. I look at my priorities differently and am reminded more often of what truly matters.

What I didn’t want was to get to the end of my healing journey to then share with others how thankful I am as to how much God grew me from this experience and that life is great. Life is a journey of constant ups and downs and I’m not going to pretend it’s not. I want to say that I am thankful for this opportunity to have God work through me. After all, I believe I’m on this earth to love God and love others sacrifically. No matter what. To humble myself in order to lift others up and help them in anyway I can. I want to meet people where they are right now at this moment, in the midst of their struggling. I want to help you and your friends and family members who are discouraged and hurting for what ever reason. Whether or not it’s from a physical ailment or because of emotional or mental pain (as these can sometimes hurt more than physical pain). I want to be here for all of you, whatever that looks like. We all go through something at some point in our life where we need help and direction. I know I do.

WRAP UP

Social media can paint a great picture of what we want our life to look like. I could easily post pics on my good days and no one would ever know the daily struggles I face. Unless we are in each other’s inner circles, none of us really know what’s going on in each other’s heart. So how are we going to reach those on the opposite side of the screen who are looking at social media and believing everyone’s life but theirs is going smooth? At the end of the day we are all human and we all have experienced hurt whether past, present, or future. I’ll be the first to admit I still get FOMO when others get to go out and do something I would love to do, but I have to remind myself daily that although it’s great to live life to it’s fullest, at the end of my life that’s not what is going to matter the most.

I know I don’t know everything. But my eyes have been opened a lot through this journey and I have learned a whole new level of health and healing. And because of that, I want to be a catalyst in any way I can in your journey. If you’re in a good chapter of your life: reflect on it, appreciate it, and be thankful for this mountain top you’re on. I want to rejoice with you.

If you’re in a valley, know that it won’t last forever. And as hard as it is, find joy in the midst of it. Think of what you can learn through it as there is so much we can take away from these hard times to make us stronger in the future, to help us better relate to others more intentionally. I am here for you to confide in whether through prayer, a listening ear, guidance in the next steps to finding a differential diagnosis or pointing you in the direction to a doctor that’s right for you based on your symptoms.

In the next few weeks I want to provide some health hacks to help you live life to your fullest potential. I don’t know everything, but we all know something that just may help someone else out.