My name is Grace. I am 21-years-old and I am from Ohio.
When I was a junior in high school, I became bedridden with a "mystery illness." I went from an incredibly involved and present person in my life, to someone unrecognizable in a matter of weeks. I had horrible fatigue, joint pain, and I felt like I had the flu every moment of everyday. Many months (which turned into years) of countless and fruitless doctors appointments, medical bills, and fear would pass until I was officially diagnosed with Lyme disease through IGENEX labs at the age of 20.
No one prepares you for dealing with illness anyway, but especially an illness where no one believes you are actually sick. That has taken a large toll on me, and for a long time I tried to ignore and run away from it. I figured that almost a dozen doctors were turning a blind eye, so why shouldn't I? I felt that maybe it really was in my head; that I just needed to try and keep moving forward. That I was "crazy" for even continuing to have symptoms because every test that was run was normal. That internalized medical gaslighting that I had experienced only would prolong my healing process.
Things really fell apart when in late-2020 to early last year my symptoms went into a full relapse. I became bedridden again which forced me to quit the jobs I was working, withdraw from school, and move home with my family. I was devastated and fell into the worst depression of my life. I was sick, sad, and tired of being tired. The grief of losing my childhood, being sick and being ignored was crushing me. So I did the thing that scared me the most to do again. I reached out for help.
Through the support of my family (especially my wonderful mother), my LLMD who has helped save my life, as well as my wonderful therapist and Generation Lyme's support groups, I am finally getting back on the right track to health and happiness. Despite the obstacles, I have been able to accomplish a lot since that time. I graduated from community college with my Associate's in Psychology, and I transferred to a four-year university where I will complete my Bachelor's of Arts in Psychology, with a minor in Child Abuse and Neglect next spring. I plan on going into law/disability advocacy for a career. Hopefully, I will get to help people like me for a living, which is my goal.
Healthwise, I am improving all of the time, although I still have a long ways to go. It is a marathon, not a sprint, as frustrating at it can be sometimes. Healing is not always linear, but it does always move me forward, and for that I am forever grateful.
I am so incredibly thankful for the grant the Lyme Treatment Foundation has given me, because it's not only helping carry the financial burden of this illness, but it means something more. It symbolizes hope and a brighter future.
I wish I could say that Lyme was no longer a large part of my life, but that would not be truthful. However, I am young with a lot of life ahead of me, even though for a long time I felt like Lyme had taken away my entire chance for a future. I feel like I have received a second chance and I refuse to waste it. For the first time in a long time, I am not scared, but excited to see what's next.
This grant has helped tremendously with paying for treatment, testing and LLMD visits. My insurance doesn't really cover anything, so it has helped so much on the pursuit back to being a functioning person again.
Of course fear does not automatically lead to courage. Injury does not necessarily lead to insight. Hardship will not automatically make us better. Pain can break us or make us wiser. Suffering can destroy us or make us stronger. Fear can cripple us, or it can make us more courageous. It is resilience that makes the difference." -Eric Greitens
Eight years ago I was at work when I started having trouble speaking, the right side of my face drooped and I saw spots in my vision. I ended up in the ER having test after test. Hours later a doctor came in and told me all the tests were fine and that all he could suggest was I see a neurologist. I made an appointment and while I was waiting for it my left arm started going numb and my left hand clawed up.
The neurologist I went to sent me to the Mayo Clinic. All they found was an essential tremor. The original neurologist told me there was nothing wrong with me and offered a referral to a psychiatrist. I left his office in tears. At that point, no one had tested me for or mentioned Lyme disease. For seven years I went from just struggling through everyday activities to giving in and calling other neurologists. They suggested Parkinson’s, MS, early-onset Alzheimer’s, complex migraines, and the list goes on. Then they ruled them all out. I had two Lyme disease tests (at my request). Both were negative.
In March of 2021 after being put on steroids for my neck I had another stroke-like episode and vision loss and went to the ER again. $6,000 out of pocket later I was again told to see a neurologist. They ruled out migraines and had no other suggestions. At this point, my stepmother mentioned an acquaintance whose daughter had Lyme. She suggested IGeneX labs. I sent away the blood sample and found out I did in fact have Lyme disease.
Since then I have been fighting to get my treatment covered and to get short and long-term disability approved. I have now started treatment and am having some good days and some bad with herx reactions. I am writing to anyone and everyone (senators, congressmen, governors) about chronic, late-stage, and misdiagnosed Lyme disease. It is terrible the lack of support for Lyme patients. I will continue to fight for my health and for change in Lyme treatment and testing.
"Where do I start with what the grant has done for me? The grant has done more for me than I could have ever thought possible. I now have not only gained so many aspects of my health back, but I also have gained the support team I have been praying for.
The grant provided me the ability to meet Dr. LaCava and his wife Suzanne, who have continued to treat me after the grant ran out. I have made lifelong friends, the staff even took me out to dinner one night. The grant provided me the ability to find the right doctors to gain my life back, and I could not be more thankful. I have seen so many changes, as have the people close to me since I started this treatment in November.
Last year I was unable to even stay awake for an hour. I spent my days in bed or in the hospital. I was unable to drive, to read, to write, to cook, to work. I lost all of my hair, my skin looked awful, I was smaller than I had ever been in my life. I truly wanted to end my life, I felt like I was already dying.
This has all changed for me since I started this treatment, and I have more improvements with every round. The grant has given me the ability to have excitement for life again. I am not only healing my Lyme disease and co-infections, but I am also healing myself and finding a whole new person that's been hidden behind these infections for 14 years.
I am beyond grateful I took a leap of faith, and I asked for help. I wouldn't be writing this today if I didn't."
Grant Recipient, Ashley F.
More stories coming Summer 2022
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