Courtney's Lyme Fight

Over the course of 12 years Lyme disease has taken a once vibrant, energetic, intelligent, beautiful, young girl and debilitated a 21-year-old young woman to the point of being bedridden with little quality of life. As her mom, having a child with Lyme disease is the most difficult thing I have ever had to endure.  My heart physically hurts, and it feels as though there is an actual hole in my heart.  If you understand this type of sadness I am truly sorry for what you are going through or have gone through.  I have had to helplessly stand by and watch my daughter suffer through excruciating pain while trying to give her comfort when medication couldn’t.  I have also had to sit by her side and mourn so many of the hopes and dreams she'd had for her young life.  


Courtney’s Lyme Disease went misdiagnosed for almost 8 years.  During this time, the disease had already penetrated nearly every organ system in her body (and if it hadn't then, it certainly has now).  We have been to numerous doctors, clinics, universities, hospitals and tried so many treatment plans which have all sadly failed her.  There is little-to-none known about the treatment of Advanced Neurological Lyme; or many of the other co-infections that have wreaked havok on her body--leaving it in the horrifying state that it is currently in today.  Any form of treatment itself is considered controversial because there is so little research being done, and thus no proven protocol for treatment of the "advanced" or long-term cases like hers.  Most doctors are only willing to treat the symptoms of her disease, rather than actually attempting to get to the actual root of the problem. Courtney was once a lively and healthy,  active young woman, who now suffers with cardiac arrhythmias, severe neurological deficits, arthritis, and a myriad of symptoms that goes on….  I can’t believe there are so few people in the medical community willing to treat her.  So many doctors have just give up when they no longer know what to do.  You don’t know how many times I have been told by a doctor that “this is not my area of specialty” and have them dismiss the case leaving me nowhere to go with my sick child. If it sounds like I am angry, it’s because I am, and I’m heartbroken and scared.  Sadly, I have been left with little recourse and have been left to do my own research trying to figure out what’s working for some Lyme patients and what could possibly work for Courtney.  I am grateful to a few doctors that have stayed by our side throughout this journey & haven't given up hope.  They may not know how to cure her, but have offered us good advice and have always been very caring and compassionate towards Courtney and her case;  trying to help in any way that they can. 


Courtney did 1 ½ years of vigorous IV and oral antibiotic treatment.  Which sadly, did not cure her and left her body in an even more immunocompromised state that has allowed whatever infections not killed by the antibiotics to repopulate, reinforce their defenses, and further compromise her body.  This set back was devastating.  We had invested so much in this treatment and when it failed it, left us feeling even more hopeless. I went into panic mode and started trying every possible treatment that was out there with no avail.  Going into this battle I was not aware of all of the pitfalls and misinformation that exists in the "treatment-world" of Lyme Disease. Nor did I estimate the cost the average Lyme patient pays for treatment. Antibiotic therapy costed us about $70,000, stem cell therapy thus far has cost over $20,000 (and that’s with a generous discount from the very caring physician overseeing her treatment there), Neurogenx therapy was $18,000, and we’ve tried other things like Hyperbaric Oxygen Therapy, Accupuncture, and other various treatments all uncovered by insurance. Unfortunately, most of these efforts have been unproductive and have yielded minimal results.   I am grateful to my parents for the financial and emotional support that they have given us. We have also been blessed to have many friends in our New Tampa community that have been there for us time and time again.  I have come to realize the importance of having a Lyme literate doctor to coordinate your care with and cater treatment to your individual needs.  This is by no means “cookie cutter” medicine, and it takes someone with a great deal of expertise to treat this disease properly.

                          _______________________________

Through persistence, patience, thorough research, and God’s guidance I have found a doctor that is treating Lyme Disease and Cancer in patients who can greatly empathize with Courtney and her situation, all of which who have had amazing success with his treatment protocol thus far.  For the first time in a long time, hope has returned to us.  I have put forth every cent I have to pay for the first 6 weeks of treatment.  I do not have enough money as a single mom to pay for her entire treatment.  I am putting this in God’s hands that he will help provide a way to for us to pay for the remainder of the treatment.  It is difficult for me to ask for help, but I have no choice, and am becoming very desperate for my daughter to get a semblance of normalcy back in her life. Treatment is estimated to be anywhere between $60,000 – 75,000. I am grateful for any contribution that you feel led you to donate towards her treatment. 

Thank you, and much love!

Donations

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  • Anonymous 
    • $191 
    • 31 mos
  • Anonymous 
    • $325 
    • 32 mos
  • Karl Pohlman 
    • $100 
    • 35 mos
  • Diana Pohlman 
    • $100 
    • 35 mos
  • Anonymous 
    • $381 
    • 35 mos
See all

Organizer

Katie Krysa 
Organizer
Tampa, FL
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