Grant Recipient Stories

My name is Jeanette Love and I am pleased to have received the Lyme Foundation Grant to assist with my medical bills out of state for Lyme care.  I have been treated by Lyme literate doctors since 2004 with my daughter who also has chronic Lyme.  

I grew up in Iowa, having spent summers on my grandma's farm near Woodward, Iowa.  Each summer, we pulled several ticks off our heads as kids.  We also spent summers in Curtis, Michigan with my mother's side of the family and encountered ticks resulting in rashes, illnesses, and psychological challenges especially in our mother who died early in life from a heart attack.  Her life was spent going to several doctors for schizo-affective treatment, fibromyalgia, and much more.  My daughter was born with febrile seizures, 105 fevers, anxiety, depression and always being ill as a child into adult years.  

Similar to my childhood of having headaches, photophobia, fatigue, napping while friends played, cognitive disabilities, rashes, and much more.  Lyme has been present in multigenerational family members without a proper diagnosis until I went to a Lyme literate doctor in Kansas City who diagnosed Babesia and Borrelia burgdorferi in my daughter and myself, including Bartonella in 2004.  Since that diagnosis, it has been a traumatic experience in Johnson and Linn County, Iowa. 

 My daughter was bullied in school, not taken seriously with her 504 plans, dismissed as being lazy and told it was all in her head.  We were rejected for community help with medical bills, housing, transportation, and support.  Churches rejected our constant plea for help when we needed stable housing.  

To this day, medical professionals in Iowa will not take us seriously.  We are not allowed to discuss Lyme disease in our appointments or get referrals for more help.  We were turned down for disability benefits in 2016, upon finding that in-state doctors were refusing to document many of our complaints, especially the Lyme diagnosis.  I am currently complaining to doctors after reviewing their notes on the absence of my disabilities and chronic Lyme in the notes after visits.  This is very stressful.  

My daughter and I both fight PTSD from our illness with explaining to Iowa doctors that we are truly sick with this disease.  Unfortunately, my daughter has given up on her fight and will not advocate for herself in her appointments due to the intolerance by medical staff.  I returned to paying cash for out of state care in Missouri this year.  I am positive for Borrelia burgdorferi, Borrelia afzelii, Borrelia garinii, and Borrelia miyamotoi.  I am currently being tested for coinfections which is quite expensive when I work part time and sleep mostly.  My goal is to continue to test and to research how best to treat the chronic Lyme going forward after antibiotics for 8 years.  I am seeking holistic methods.  

In 2020, I experienced psychosis which has led to a decline in health mostly due to medicines prescribed by non-Lyme literate doctors, further aggravating my health.  I plan to relocate to Florida for Lyme care and shelter housing to escape the cold winter here in Iowa.  In the summers I will return to be with my daughter again.  I hope that I can find a more supportive community that embraces a homeless person with illness.  

A Lyme support group and good medical would be appreciated, in addition to safe housing and low stress outside environment.  For my daughter, I ask for prayers in her journey as she faces the continued hostility from a community that does not want to embrace Lyme disease or the chronically ill individual. Thank you. 

How has your Lyme Treatment Foundation impacted your life? Thanks to the Lyme Treatment Foundation I can pursue Lyme treatment and testing with my Lyme Literate doctor out of state.  I also have gained confidence that I am heard and taken seriously with this disease.  It is nice to have validation from a foundation who truly cares about individuals who are trying to better themselves, get the help they need and who are struggling financially to afford Lyme treatment.

Warning: the below article deals with the sensitive topic of suicide. 

I don’t know when I got Lyme but it was sometime when I was a teenager on one of my hiking trips/ vacations. I just know over the years that I’ve had really bad declining health with every test telling me I am fine. I was so suicidal at 18. I had constant violent panic attacks for months and I couldn’t even hear certain sounds or noises without going into a spiral. I self admitted myself into the hospital so I wouldn’t kill myself. 

From that point on I was on a ton of antidepressants and hormonal pills which patched it/band-aided it  for a time. So I’d have to still have a mead adjustment every month or so because I would go through a frequent crash and have to constantly switch jobs and friend groups from embarrassing spasms either physically or mentally or both. 

It got to the point at around 21-22 that I was getting really bad seizures, shakes, fainting spells and more panic attacks. It got to the point where I couldn’t help it anymore and I couldn’t even work one day a week for three hours without falling on the floor and someone needing to call my parents to get me.  

At the point where I couldn’t move or leave the couch or do anything my mom just started to search out for different medical locations to take me to eventually through referrals we went out to Ann Arbor Michigan for testing outside the standard medical system. 

The nurse practitioner suggested that I get a Lyme disease test sent to the specialty clinic in California ConnieXions and that’s when I got my positive results back after spending $1500 just on one test just to get an answer. I’ve been tested three different times by my primary care doctor in the past and they all came back negative because standardized Lyme tests only pick up positive tests 15% of the time. 

I was at the worst stage Lyme could be at stage 3 with 3/10 types of Lyme disease. I’ve been in treatment for about two years now on mainly homeopathic medicines, teas, antibiotics, organic foods/watching nutrition and hormone pills. The hardest things to deal with have been: mentally with my focus, shakes/spasms, depression, anxiety, asthma/trouble breathing, allergy issues and weight gain that I can’t get rid of no matter what I do which really crushes my self esteem and prevents me from wearing the things I like. Sometimes when I’m lucky I get to go for walks but most of the time it’s hard to walk around very well because of the dizziness and faint spells. If I can’t go for a walk my mom will take me out for car rides. 

My mom is my Caretaker and spends pretty much all day everyday with me and is my best friend. Without my mom I would’ve been dead. She found me everything I needed and has provided me with everything she can so I don’t have to worry about anything and can relax in my healing process. A big part of the help has been from the Lyme Treatment Foundation grant. Without the assistance, many of the tests and treatments I may not have been able to afford to try to see if they would help with the Lyme Disease.  

I’m having to re-discover myself through Lyme treatment especially since I’ve never been able to get a steady foot in life. I don’t know who I am but I’m trying to get there. And I’d like to find other people to help especially as I get better so I can fight for the little guy that doesn’t have a voice or power to speak up. 

I have been lucky to make a few friends that will contact me and check up on me and will take me out to fun events and be my handlers which I’m very appreciative for.  My senior pup Panda Rae has also been a huge support for me going through tough times with him always there to cuddle with me. 

My favorite things to do to keep myself distracted through healing have been: going for walks and enjoying nature when I’m able, painting with different mediums, sewing, crafts, and video games.

How has your Lyme Treatment Foundation grant impacted your life? It’s enabled Nicole to get treatment and medicines that we couldn’t have afforded without it.

Share a quote with us that has helped you heal: "I can and I will!"

Share a piece of advice for those battling Lyme disease: "Listen to your body and do whatever it takes to get the help you need and be a Lyme Warrior."

**if you are experiencing difficult thoughts, please call the hotlines below for help. 

For those in the USA dial 988

For those in Canada, call 1-833-456-4566. 

For those in the UK, call +44 (0) 8457 90 90 90. 

For those in Germany call  0800 181 0771 

After working on various farms in New England in 2014 I suffered from unexplained inflammation, joint pain, and various cognitive difficulties for several years. After having dental surgery in 2019 I became very ill with a multitude of physical, cognitive, and psychiatric symptoms that seemed to have no explanation. 

After being passed off by a few Doctors I got my diagnosis in early 2020 for Lyme and multiple co-infections and began treatment. Since then my life has been a wild ride of very debilitating symptoms that have prevented me from, working, driving, and at times even taking care of myself. 

It has been a scary and painful experience that has been very hard on me and my family. I will continue fighting daily for my recovery. I am very grateful for my Lyme Doctor and my family, especially my Mother whom I would not be able to survive this treatment without. She has been there to help me every step of the way and is the best support system anyone could ever ask for.  I am very lucky and grateful to be treating with a wonderful Lyme Doctor in Denver, CO, where I travel six hours to on a monthly basis from my home in Wyoming. 

I am so grateful to the Lyme Treatment Foundation for awarding me a grant, so that I will be able to continue my treatment and have hope that I will eventually make an almost full recovery. Ongoing Lyme treatment is such a financially exhausting experience that has completely torn apart mine and my family’s lives. 

This grant is truly a blessing which I wouldn’t be able to survive without! Thank You so much to the Lyme Treatment Foundation for making this fight for my health slightly easier and my goal of recovery seem more in reach! 

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.