Grant Recipient Stories

My  name  is  Katelyn  Weaver  and  11  years  ago  I  became  suddenly  really  sick. I  thought  at  first  it  was  just  a  flu  or  bad  virus  but  quickly  realized  something  was  very  wrong  when  I  could  no  longer  walk  without  terrible  pain. In  a  month’s  time, the  pain  spread  all  over  my  body. 

I went to so many doctors, specialists, had a ton of blood work done but nothing came back with any results. I was given the diagnosis of fibromyalgia after 8 months of testing. There was always something in the back of my head that told me they were missing something and that there had to be an underlying condition. I was developing newer symptoms as time passed, such as “brain tremors” and a heart arrhythmia and I was getting nervous something was very wrong.   

I had been tested about 4 or 5 times for Lyme disease, over the years and nothing ever came back as positive. Early 2020 my younger sister started to get very sick and while some of the symptoms were different than mine, there were some paralleled similarities. She, too, went for a ton of tests and nothing came back to give any indication of what was wrong. She was told by a friend to go to a Lyme specialist and have testing done for Lyme disease and then she had her answer, it was Lyme disease and had been in her system for a long time.  

She urged me to get testing done at this clinic in CT just to be sure I didn’t have it too. I’ll admit, I was skeptical. I had been tested so many times in the past, there was a low chance of being positive, so I thought. I went for the test, mostly for my family’s peace of mind. I was positive for Lyme and 2 co-infections: Babesia and Bartonella.   

I experienced a range of emotions with the diagnosis. I was relieved to know finally, after all these years, what I had. I was also angry with conventional medicine for failing me, and anxiety for how expensive the treatment is, especially since it would be a long journey to recovery.  

I’m so incredibly grateful for the grant to help me to afford treatment that I would have otherwise paid out of pocket. I’m not fully healed yet, but I’m getting there and it’s largely thanks to the Lyme Foundation and my ND in CT. Thank you so much for creating this opportunity for individuals such as myself. The healthcare system may have failed us in the lack of coverage for medical expenses for Lyme treatment, but this Foundation has been like a beacon when everything felt dark and hopeless.  

The grant from Lyme Treatment Foundation has given me back quality of life. I’m able to do more of the things I love and that bring me joy and happiness.

Thank you again, I’ll be forever grateful.

Katelyn's Inspiring Messages: 

Quote for healing: “You never know how strong you are until strong is the only choice you have.” 

-Bob Marley

Advice to someone battling Lyme disease: "It may seem scary, tiring, and at times you may want to give up but you owe it to yourself to fight. You can get better, you will get better, just keep moving forward and don’t give up.

 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.