Kelly’s 15 Year Health Battle with Lyme Disease

Kelly Mastronardi is organizing this fundraiser.

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Above: Being treated for a Kidney Infection

Above: Receiving Hydrotherapy

For those of you who know me, you know I’m pretty open about my health issues. For those of you who don’t, I’ll try to sum up what’s going on as best I can.

Above & Below: Receiving Iron Infusions

I was always an anxious kid, I was diagnosed with Generalized Anxiety Disorder and Panic Attacks as young as 1st grade. Besides that and getting sinus infections quite often, I was pretty healthy.

Above: Getting ready for a Sleep Study

But May of 2007 is when my life changed. I was 20 years old and in my second year of college. I thought I had another sinus infection, which wouldn’t have been uncommon for me. I went to my doctor and was prescribed antibiotics. A few days later I developed a fever, swollen glands and a stiff neck. My mom, being a nurse, said we should go to the ER. A lot of blood work, either a CT scan or MRI (I can’t remember which) and a spinal tap later, I found out I had Aseptic Meningitis. A few days later the rest of my blood work came back and I was also positive for EBV (Epstein Barr Virus), Lyme Disease and 2 other tick-borne illnesses called Ehrlichiosis and Babesiosis (a malaria-like virus). I went to an Infectious Disease doctor who put me on 2 weeks of Doxycycline. After those 2 weeks when I still complained of symptoms and not feeling right, I was told “It can’t be Lyme Disease because you were treated for it.” And so my journey to feel how I did before that night in the ER started.

Above: Getting a specific EEG done with a Neuro-Ophthalmologist

Below: Being gaslit is always fun

Today I'm 35 years old and I’m still searching. When you’re told so many times by healthcare professionals that Chronic Lyme doesn’t exist, you aren’t feeling better and the testing isn’t accurate so your results are negative one time then positive the next, you start to seek out any and every specialist. I’ve gone through all the paperwork I’ve been keeping and this is no exaggeration...These are all the specialists I’ve seen (listed in alphabetical order):

Acupuncturist, Allergist, Cardiologist, Chiropracter, Dermatologist, Endocrinologist, Endodontist, E.N.T., Gastroenterologist, Hematologist, Homeopathic/Naturopath, Immunologist, Infectious Disease Specialist, LLMD (Lyme Literate Medical Doctor), Neurologist, Neuro-Ophthalmologist, Nutritionist, Oral Surgeon, Psychiatrist, Therapist, TMJ Specialist, Urologist.

Above & Below: A bad reaction to the PICC Line adhesive & dressing.

Once seeing these doctors, they almost always order tests, medications or procedures. Here are tests/procedures/surgeries I’ve had done(in no particular order):

A Hysterectomy, 2 Sinus Surgeries, 13 (Yes, 13) Endoscopies, 3 Gastric Emptying Studies, Stool Samples, Allergy Testing, Spinal Tap, Oral Surgeries, Head MRIs and CT scans, EEG’s, EKG’s, Heart Halter Monitors, Sleep Study, Echocardiograms, Stress Tests, Barium Swallow, more blood work than I can count and more that I can’t recall.

Above: POTS symptom: Heart rate getting up to 140 just from switching positions of laying down to standing.

Tests and procedures are used to come up with a diagnosis. Here is everything I’ve been diagnosed with:

Generalized Anxiety Disorder, Panic Attacks, OCD, Depression, PTSD, Iron Deficiency Anemia, Kidney Infections, UTI’s, TMJ Disorder, Gastroparesis, Gastritis, Esophagitis, Gastritis, Acid Reflux, 2 Stomach Ulcers, Ruptured Ovarian Cysts, Fibroids, Allergies, Sinusitis, Migraines, Lyme Disease, EBV (Epstein Barr Virus), Aseptic Meningitis, Bartonella, Babesiosis, Ehrlichiosis, Malabsorption, Blood Clots from a PICC line, Contusions from a wrongly placed PICC line, POTS (Postural Orthostatic Tachycardia Syndrome), MTHFR Gene Mutation, SIBO (Small Intestinal Bacterial Overgrowth).

Above: Antibiotic via PICC Line that I would administer myself: Alcohol wipe, saline flush, alcohol wipe, antibiotic, alcohol wipe, another saline flush, alcohol wipe, Heparin.

And once you’re diagnosed, you get Treatment:

Antibiotics (orally and via Midline, 3 PICC Lines), Supplements, Vitamins, Diets, Vestibular Therapy, Prisms (they’re like glasses), Hydrotherapy, Acupuncture, Reiki, Tapping, EMDR, Therapy, Mindfulness, Meditation, Yoga Nidra, SSRI’s, Benzodiazepines, Probiotics, Prebiotics, Digestive Enzymes, Digestive Biters, Aloe Juice, Ear Candling, Chiropractic Adjustments, Biofeedback, Iron Infusions, Homeopathic Medication, Every RX of Antacids, Cognitive Behavioral Therapy, CBD, Infrared Sauna, ACT (Advanced Cell Training).

Above: Attempting to put in an implant, the oral surgeon punctured my sinus and I wasn’t able to get one placed.

Below: The contusions from a PICC line…the medical professional who inserted it was having trouble and told me “Okay, last try, I’m going to try to just shove it in”. These are the results. The PICC was removed a few days later.

As you can see, I’ve tried A LOT. It gets to be very discouraging when you’re still sick after all of that. It’s also been a huge financial burden. I've exhausted all my options. I tried to get on disability but Lyme Disease isn't a qualifying medical condition. I can’t take out any loans due to all the bills that have gone into collections. I've cashed in all my savings bonds. Any money that was put aside for me by my mom and grandparents was used for medical bills. I don't have all of my receipts from the past 15 years because I never thought it would come to this.

Two of my more embarrassing pictures: Allergic reaction to the dressing and the metals used in the instruments for a laparoscopic Hysterectomy.

These are all out-of-pocket expenses that I could find receipts of:

Again, these are only receipts I could find…we’ve spent SO MUCH money. I never thought I’d need to keep them all.

Oral Surgeon: $925, $625 UNPAID

Procedure: $286.79 PAID

Hospital: $3,599 (IN COLLECTION)

Naturopathic Doctor #1: $417.61, $215, $161.42, $250, $153.34 PAID

Naturopathic Doctor #2: $30, $15, $15, $48.66, $30, $61.35, $299 PAID

Lyme Literate Medical Doctor: $2,475 PAID

Medications for a month in 2016: $115.53 PAID

Neuro-Ophthalmologist: $770, $952 UNPAID (IN COLLECTION)

Genova Diagnostics: $243 UNPAID

Dentist: $462, $50 UNPAID (IN COLLECTION)

Endodontist: $1,075, $2,990 UNPAID

Dermatology: $90, $110 PAID

Therapist #1: $207.36 UNPAID

Therapist #2: $675.09 UNPAID

Therapist #3: $627 UNPAID

Therapist/Holistic Healer: $1,161.76 PAID

SIBO Test: $197 PAID

UNPAID DEBTS: $13,200.45

THIS IS HONESTLY PROBABLY ONLY ¼ OF WHAT WE’VE PAID OVER THESE PAST 15 YEARS.

I’m asking for the balance of my above-listed debt so I can move on and start my new treatments with doctors who I really love and understand what’s going on with me but are out of pocket. And for a little extra to get me started with this new health regime which will go towards the doctor visits, treatments and supplements/medications.

Above: A few friends supporting me by doing a Lyme run/walk. (Maria, Mel, Julia & Julie)

After having Covid 19 for 3 weeks this past December, I realized how bad my immune system is. Being told in the ER that my pre-existing conditions were working against me with my infection made me realize, I really need to commit to something and get better because I want to enjoy my life, not just get by.

I never want to feel as awful as I did with Covid again. It's hard to tell what is leftover from Covid and what are my normal everyday symptoms that I always have.

Daily this is what I’m feeling (Despite what you may see on social media or if we’re hanging out): Acid Reflux, Agoraphobic moments, Anxiety, Brain Fog/Disrealization( I can be looking at my mom and not recognize her, but I can tell you exactly who she is. Things I know, don’t look familiar), Bloating, Balance Issues, Constant Low-Grade Fever, Dizziness, Depression, Fatigue, Heavy Head, Headaches or Migraines, Heat Intolerance, Hot Flashes, Heart Palpitations, Insomnia, Jaw Pain, Light Sensitivity, Muscle Spasms, Memory Issues (forgetting the names of everyday items, unable to find the right words when talking), Nausea, Panic Attacks, Tingling Sensations, Trouble Swallowing (leads me to become dehydrated), Unable to regulate my body temperature.

I like to say I haven't gotten better, I've just gotten better at hiding how I feel.

It took A LOT for me to get the nerve to be as open and vulnerable as this. If you can’t donate, just reading this means a lot to me. Lyme Disease affects every single part of your body. If you didn’t already know that, I hope you do now. If you do donate, I am forever grateful and I cannot thank you enough. Even $1 or $5 will go a long way. Sharing this is also greatly appreciated. Thank you so much and I wish you all a Happy and Healthy 2023.

Kelly

(Below are pictures of some of the bills that I have listed above)