Nell’s Lyme Story
Lyme disease is a tick borne disease, meaning you most commonly catch the disease from the bite of a tick. (Though my youngest son caught it from me, while in utero.) Sadly most people with the disease don’t get diagnosed in time for a simple treatment of antibiotics and a cure. Most of us go undiagnosed or misdiagnosed for years, which only makes the disease that much worse, and a cure then eludes us.
It’s also controversial, with the CDC refusing to admit late-stage Lyme even exists. According to the CDC 300,000 new cases of Lyme are reported each year but that number is most likely dramatically higher as the testing methods are flawed, not to mention most people are misdiagnosed with diseases such as Lupus, MS, Chronic Fatigue Syndrome, and so on.
Awareness has begun to build with celebrities being diagnosed with the disease. Most public with the disease was Yolanda Hadid (formerly Yolanda Foster) of The Real Housewives fame. And although she has experienced a recent backlash, with people going as far as to say she doesn’t have Lyme, something we ALL experience once diagnosed, she continues to fight for an affordable cure for us all and bringing further awareness to the disease.
Some of the more common symptoms at the beginning of the disease are:
- Flu-like symptoms
- Muscle aches
- Weak muscles
- Bell’s Palsy
Just to name a few.
Some common misconceptions of Lyme disease would be as follows:
- Hard to catch
- Easy to cure
- Everyone gets a bulls-eye rash (less than 50% do)
- A blood test will be a definitive answer (many are Lyme positive even when the test suggests otherwise)
As the disease progresses the symptoms become quite varied from person to person, making it difficult to diagnose without a proper blood test (which is still yet to be created). Most doctors simply aren’t educated on what late-stage Lyme disease looks like, so they often miss it.
Below are many of the symptoms in late-stage Lyme disease – please note, you could have only a few of the following symptoms, or all of them! It depends on how long you’ve had the disease, how far it progressed in your body, etc, and so on.
- Unexplained hair loss
- Headache, mild or severe,
- Pressure in head
- Twitching of facial or other muscles/tics
- Facial paralysis
- Tingling of nose, (tip of) tongue, cheek or facial flushing
- Stiff or painful neck
- Jaw pain or stiffness
- Dental problems (unexplained)
- Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose
- Double or blurry vision
- Increased floating spots
- Pain in eyes, or swelling around eyes
- Oversensitivity to light
- Flashing lights/Peripheral waves/phantom images in corner of eyes
- Decreased hearing in one or both ears, plugged ears
- Buzzing in ears
- Pain in ears, oversensitivity to sounds
- Ringing in one or both ears
- Bone pain, joint pain or swelling, carpal tunnel syndrome
- Stiffness of joints, back, neck, tennis elbow
- Muscle pain or cramps, (Fibromyalgia)
- Shortness of breath, can’t get full/satisfying breath, cough
- Chest pain or rib soreness
- Night sweats or unexplained chills
- Heart palpitations or extra beats
- Paranoia/feeling like you could break from reality/forget who you are/where you are etc
- Tremors or unexplained shaking
- Burning or stabbing sensations in the body
- Fatigue, Chronic Fatigue Syndrome, Weaknes
- Pressure in the head
- Numbness in body, tingling, pinpricks
- Poor balance, dizziness, difficulty walking
- Increased motion sickness
- Lightheadedness, wooziness
- Mood swings, irritability
- Disorientation (getting or feeling lost)
- Feeling as if you are losing your mind
- Over-emotional reactions, crying easily
- Too much sleep, or insomnia
- Difficulty falling or staying asleep
- Panic attacks, anxiety
- Memory loss (short or long term)
- Confusion, difficulty in thinking
- Difficulty with concentration or reading
- Going to the wrong place
- Speech difficulty (slurred or slow)
- Stammering speech
- Forgetting how to perform simple tasks
- Unexplained fevers (high or low grade)
- Low body temperature when no fevers
- Wide spread red coloring of skin
What do most people do that suspect Lyme? They go to the first line of defense, their local doctor, who likely isn’t educated on Lyme disease, he or she goes strictly by the flawed blood tests, which often don’t come back with enough markers to be CDC positive, the doctor then tells the Lyme patient they are negative for the disease, and the patient either takes that at face value, because – after all – they are medical professionals and we’re taught to trust them, or they don’t take that as the end all be all answer, and they seek out a LLMD.
What is an LLMD? An LLMD is simply a Lyme Literate Medical Doctor, someone who is well educated in the disease. Someone who can go off of blood work AND clinical findings to come up with a diagnosis. An LLMD will cost you out of pocket because insurance companies still refuse to cover their office visits (again, see the controversy of Lyme as the source of this) most often, but the way I look at it is — would you rather spend money (if you can) on a specialist that can better help you treat the disease, or would you like to go undiagnosed, and untreated, and allow the disease to fester and grow in your body? I chose the former.
Which leads me to share bits and pieces of my own Lyme disease journey with you. I’ll make this brief, as I’ve already shared so much on this page as it is. So much of what I’ve shared with you is much more valuable to raising awareness than sharing the details of my struggles with Lyme. However, sharing my story is important to me, so I’m happy to do so.
I will tell you upfront, one of my sons also has the disease. He caught it from me, while in my womb. As he’s grown, I’ve been more hesitant to share details of his story publicly, as this is HIS story to tell, not mine. He will tell his story when he’s ready if he ever feels ready. So please note, me not sharing his story with you does not, in any way, shape, or form, indicate I don’t care about his story, or put my own above his. I love him and ache for him and have cried more tears for that boy than anyone but God knows. In the same breath, I’m also so utterly proud of him and root him on and am happy to see him progress with treatment. I do what I do to raise awareness for HIM and his future. This boy deserves a cure, he deserves the opportunity to live in a healthy body, something he’s never known. So I may not talk about personal details much with you in regards to him but I fight on for him.
I was a couple of months pregnant with my son when (I suspect) a tick crawled off my dog, onto my inner ankle, and bit me. I knew nothing at all about Lyme except you could get it from ticks and someone I knew as a child had it and experienced a lot of joint pain. Because I didn’t get the bulls-eye rash, nor had joint pain at the time, no one, not even doctors, suspected my strange symptoms were from the tick bite. Everyone including myself for a period of time thought it was just because I was pregnant with my son.
Several months into the pregnancy I knew something was seriously wrong. I ended up in the ER, saw a doctor outside of my OBGYN for tests, and blood work, and nothing yielded any answers. I knew in my heart I was fighting for my life and the life of my son. I also knew whatever this was, it was likely affecting my son. How did I know? The Holy Spirit is the only answer I can give.
It was two years after the tick bite, becoming seriously ill, in and out of ER’s, several specialists, countless blood draws, a CT scan, and MRI that I heard Him tell me to ask for the Lyme disease test. I did, it came back positive enough for that doctor to set up an appointment for me with an infectious disease doctor. I researched the heck out of Lyme, discovered those specialists don’t often know what they are doing with chronic, late-stage Lyme, and decided to by-pass that visit, opting for an LLMD instead. The bite was eight years ago this 2016 and the first LLMD appointment was 6 years ago this summer 2016. (As of my edit of this page in 2020 I’ve now had the disease 12 years.)
My symptoms were out of control and I was very badly sick. See the list of symptoms earlier on this page, those were all the symptoms I had been experiencing off and on for two years. The treatment was rough. What they don’t tell you, is that you will absolutely become worse before you see any sort of relief. Which is a real shitty thing but it’s just the way it goes right now. I’m hopeful the more we learn the better we can get at treating the disease.
I went through nearly four years of traditional medical treatment, which included driving three hours one way to see my LLMD every three months, trips to the lab for blood work, heavy-duty, high doses of antibiotics, and antifungals, and countless medications for things such as my thyroid and adrenal glands, which were shot. I also ended up seeing a Psychiatrist for severe depression, anxiety, and paranoia. It was a living hell.
After a few months of feeling the Spirit prompt me into natural treatment, I finally listened. We’ve both been in the care of a wonderful ND for years now, treating the disease with herbs and natural supplements. We’ve seen a huge turn-around during this time. And although we’re both still quite sick most days, we’re so far from where we were prior to diagnosis and treatment.
Some people want me to rank in percentages where we’re at now… I hesitate to do this because, frankly, one day can be good, and the other can be a crap fest. Overall, I would say we’re 75% better on our good days. I’m able to run a busy household of three boys – I’m able to work from home for my wonderful clients and love every bit of it, I’m able to create art and write words. Although there is currently no cure for Lyme, the treatment I’ve been in has helped me to live my version of a normal life.
(EDIT 2020 – I’ve been suffering from an uptick of fatigue, pain, and migraines. My ND and I are trying to sort through this mess and figure out what’s been going on to cause a relapse of sorts of my symptoms. I’ll update this page once we come to some sort of conclusion.)
Lyme disease has no known cure. It’s a life-long diagnosis. It’s sometimes a death sentence. It’s often disabling. There are people completely bedridden 100% of their days. I am fully aware of how bad some people have the disease and I ache for them. I pray for them. I long for them to experience victory over the disease!
Please have compassion for your friend or family member with Lyme disease. Most of us have experienced those closest to us not believing we’re as sick as we are, thinking we’re making it up completely, or not even believing Lyme exists. Please support them and love them and pray for them. Bring them meals, like you would a friend with cancer, go to the doctor with them, watch their kids for them, clean their homes for them.
This is a real fight for survival and we cannot do it alone. Sadly, many of us do go at it alone. Even with the tremendous support I’ve experienced, I’ve also experienced people turning their backs on me and my son and the disease we fight.
If you think you or someone you know has Lyme, and you want a friend to talk to about it, please never hesitate to contact me through email. I am limited in the time I can give to you, as I’m sick, trying to raise a family, keep a home moving well, and loving my husband – but I will do what I can and be there for you the best ways I know how. I will guide you and pray for you and root you on. Find my contact page above for my information.
Thank you so very much for reading this page. You have no idea how much this means to me to know you’ve taken the time to participate in my goal of raising awareness for this dreadful disease.
God bless you and may you know how loved you are by the God who hung the moon and breathed the stars to life!