Hannah's story

I have had it on my heart for a while to speak to parents...specifically to talk about what Lyme disease looks like in a child.  I am beginning a series of posts that will share parents stories- real stories of real kids in the United States that are sick with Lyme.  I will share my own story of how we found out my boys were positive for Lyme when I have the words for it. Eventually.

My heart is conflicted as I post this.  It is heavy because it is yet another heart-breaking Lyme disease story, but also I am so deeply humbled and honored that a fellow mom has allowed me to share a window into her child's life with Lyme on this blog.  (A., I think you are brave.  Thank you so much for your willingness to be vulnerable in sharing this with us.)  

I would like to introduce to you a family residing in Ohio, whose fifteen year old daughter is fighting Lyme.  My words will be few in this post because I want to give them the floor to share what their Lyme journey has been like.  So here is their story, in their own words.  

"Hi, I'm Hannah! My mom and I are here to share my story and spread awareness about Lyme Disease. 

I'm not sure exactly when I got Lyme Disease. I don't remember getting a tick bite or a bullseye rash. On Easter 2014, I got a headache that ended up lasting 5 months. My symptoms before this were mild (dizziness, fatigue, anxiety, depression, nausea and stomach issues) but still troubling. 

The Easter headache led us to neurology. Despite all the blood tests and MRI's coming back normal, I was put on many medications, given IV infusions, and a nerve block. None of them helped my symptoms. I was referred to an eye doctor and received glasses. When summer came, my headaches disappeared. We assumed either the glasses were helping or the headaches were caused by stress. 

I started running Cross Country. The more I ran, the worse I felt. I started to experience more symptoms such as: joint pain, fatigue, muscle weakness, dizziness, vertigo, headaches, nausea and TMJ. My freshman year had begun, we were still searching for answers. At the end of September I got a concussion in gym class. This complicated everything. I was sent to a physical therapist for ocular motor therapy. I had to quit Cross Country and all after school activities due to my symptoms. The TMJ symptoms I mentioned earlier, brought me to a chiropractor. She was unable to help so she referred me to an occupational therapist that does cranio-sacral therapy. 

I was also developing heart related symptoms. Chest pain and shortness of breath landed me in the ER. My chest x-ray and EKG were normal. To be safe, they referred me to a cardiologist. Right after this incident, I saw PT for the first time. After describing my symptoms, he seemed to know exactly what is wrong with me. He said I have something called POTS. POTS stands for Postural Orthostatic Tachycardia Syndrome. Basically this means that when I stand up my heart rate increases at an unhealthy rate. POTS is a problem with the autonomic nervous system. We thought we had it all figured out! boy were we wrong... At our first visit with cardiology, we mentioned POTS. A tilt table test (my least favorite thing throughout this whole experience) confirmed the diagnosis. Over the next few months, we experimented with many different meds but all of them seemed to make me sicker. UNTIL, my magic med, Clonidine. I was still symptomatic but it helped me more than anything else we had tried. During this time, I was missing a lot of school and found it difficult to keep up. My teachers were very understanding and helped me through the rest of the school year. I finished the year with A's in all my classes! 

Before I had a diagnosis and even now, I am doubted by many doctors. They repeatedly send me to psychology for therapy. It never has never helped because I have a physical illness!! Since I wasn't getting very far with traditional medicine, we decided to see a neuropathic doctor. He put me on a lot of supplements (30 pills per day), changed my diet and did more testing. We had been looking for the cause of my POTS since I was diagnosed. We realized that I have most of the symptoms of Lyme Disease. The neuropathic doctor agreed with us. We ordered a Western Blot Lyme Disease Test from IgeneX Labs. Waiting for the results was the longest 3 weeks of my life! While we were waiting for results, I saw my rheumatologist. She said that she could tell by looking at me, that I don't have Lyme disease and that I would never be pain free. She infuriated me and made us second guess ourselves. Two days later, we got the results and they were positive. We were all relieved and scared. 

Since then we have been slowly adding more herbal supplements to begin my Lyme disease treatment. I had to quit public school and I'm doing online school. 

I am doing well but I really want to go back to public school next year. 

I am taking multiple supplements to make my body stronger and help my immune system. I tried taking supplements for my Lyme disease but they made me sicker. I could hardly eat when I took them. I had lots of nausea, stomach pain, and weight loss. I also developed an ovarian cyst that burst. We stopped the Lyme supplements for a couple weeks and start back up after the holidays.

Here is her list of symptoms:

Headaches/ migraines 

Anxiety 

Depression 

Dry mouth

Dry eyes

Insomnia 

Difficulty Swallowing 

Swollen and sore Lymph nodes

Nausea

Nightmares and vivid dreams 

Loss of appetite 

Dizziness

Vertigo 

Blackouts

Numbness and tingling 

Burning and stabbing skin

Skin sensitivity 

Tmj 

Achy, sharp and throbbing joint and muscle pain

Hot and cold flashes

Palpitations 

Fevers

Night sweats 

Neck creaking 

Shaking spells

Bottom of foot pain

Chest and breathing pain

Tired and dizzy after meals

Blood pooling

Fatigue 

Cold hands and feet

Floaters

Stomach cramps and pain

Ringing in ears

Pelvic pain

Shortness of breath

Constipation/ diarrhea 

Frequent urination

Sensitive to light, sound, and chemicals

Irregular heart rate

Pain behind eyes

Irritability 

Mood swings

Seasonal allergies 

Flushing and pale face

Painful menstruation

Heat intolerance 

Brain fog

Muscle twitching and weakness

Sore throat

Increased thirst

😬😬😬😬😬"

Please pray for Hannah before you close this page.  She is still in her Lyme fight.    

We are rooting for you Hannah!  Keep putting one foot in front of the next.  Thank you so much for letting us in on your life with Lyme and raising awareness.  I pray that you feel hope in your heart, and that the Lord would give you strength to kick Lyme to the curb for good.  Remember that you are never alone, and what a blessing it is to have family that fights beside you.  God bless you, Hannah!!!  You will continue to be prayed for.