The Love of My Life Has Lyme Disease
It is very difficult writing about this subject. Every word I type causes me to tear up. Over the last 8-9 months my once extremely active and full of life fiancee Lynden has faced difficult neurological symptoms due to Lyme Disease and the co-infection Babesia, along with a multitude of viral infections.
Her symptoms include heavy depression, anxiety, extreme fatigue, air hunger (feeling a lack of oxygen and trouble breathing), dizziness/lightheadedness, migraine-like pressure headaches, brain fog (confusion, difficulty finding the right words, memory issues), depersonalization, tremors, weakness, visual changes and overall misery. Then add on side effects from all the medications and it's a multitude of additional horrible things she has to deal with. Some nights I'll come home from work and Lynden will be crying. The next minute she'll be laughing at my dumb jokes then the next yelling in anger.
Feeling powerless is something people have to do in a lot of situations everyday. However, watching a loved one not be able to simply live her life is easily the most difficult thing I've ever done.
My mom is a breast cancer survivor so I am no stranger to being strong in difficult times. Mom had an amazing support group that was there for her. People who had gone through the same thing, who had hit rock bottom before and provide perspective. Mom got to see these people in person, laugh with them, converse with them, cry with them, and eventually heal with them.
With Lyme disease in Nebraska, there is no support group, nobody who has been properly diagnosed, and no doctors even truly know the deathly serious issues of Lyme co-infections. The highest rates tend to be on the coasts. Lynden has been so focused on school and getting our life in order and last year she came to live with me in Lincoln so she could focus on her last clinical rotations and finish her doctorate. Then the life she had planned came crashing down because of one road trip to Austin.
Lynden felt a tiny bump on her back that hurt when she slept a couple nights in Austin. She assumed it was just some mosquito bite she got when she was swimming or biking. It all started with a headache and motion sickness. After she returned to Lincoln, she got horrible flu like symptoms and was bedridden for a few days, unable to even stand. After that there were sinus infections, continued extreme fatigue, an overall feeling of misery/malaise and she started fainting. We even ended up in the ER with a $10,000 bill to find out that, "nothing was wrong." Then she followed up 3 times with a local Lincoln doctor who diagnosed her with high Epstein Barr levels and told her she had mono. This added even more to our bills making it almost $15,000 and we still had no real clue what was about to come.
Lynden is a very curious person, as well as a trained and researched Occupational Therapist, so she started researching her symptoms. She found all sorts of scary things and then happened onto people discussing Lyme Disease when she posted a question about mono. She had a feeling the whole time that it couldn't all just be mono.
After positive results came back, after ASKING the doctor to test for Lyme and after 3 months of misery and not knowing what was wrong, she started to dig deeper into the disease. She has been very lucky to have gotten all positive blood test results because many people get false negatives.
It turns out Lyme Disease and the accompanying co-infections are a widespread epidemic across the globe. There are very few "Lyme Literate" doctors in our region or anywhere for that matter. Luckily with the help of some online forums, ILADS, and our Lyme doctor who is out of state, we are on the path to treatment. Without the internet forums and her online support groups like the California Lymes Association I don't know where we'd be right now. Luckily, family has helped us with some basic bills, but our overall financial situation is on hold until we can get Lynden healthy. She's maxed out all of her credit cards and is reluctantly adding more debt to her already high student loan debt.
This is a huge ego shattering time for Lynden as she was expecting to start her career and start paying back the massive amount of student loans. She is lucky enough that she manages to work in her field but she can only muster about 15 hours a week. She constantly fights fatigue, fainting, breathing problems and overall neurological difficulties that hinder her from living the life she's worked so hard towards. Lynden went from rarely taking an Ibuprofen to now taking around 50 pills a day. She is now also gluten, sugar, caffeine and alcohol free, which has been a difficult lifestyle change for her because food has always been one of her favorite things.
With your help we can pay off some of our debt and manage some of our bills as well as bring some attention to this crippling disease. We are only asking for $4,500 to barely catch us up with insurance and medication need for the next couple of months. Anything at all would be a blessing. I'm just so glad Lynden was smart enough to ask her doctor to get tested when she did. My heart goes out to those who go years and decades untreated. Some of the worst cases of Lyme and co-infections can even cause death and there is also a high rate of suicide. Luckily, with some hard work and help we can get back on track to living a normal and happy life.
All we want to do is be healthy and start a family. I can't tell you how many times I've heard the phrase, "I can't keep living like this" and feeling helpless to do anything about it other than be there for her. There is also a chance that she will never fully eradicate the disease, but get it to a manageable level so her immune system can handle it. There are also questions about it being congenital and passed through other insects, not just ticks. Much more research needs to be done.
The hardest part for us is the misunderstanding and miscommunication about this epidemic and not being able to express to our friends the extent of Lynden's misery. Lyme and co-infections are the fastest growing vector-borne disease in America. When we go out to eat and to events she looks okay to others, but the amount of pain and disconnectedness she feels makes going out a nightmare. Lynden once craved fun events, seeing her friends and spending time outdoors. Now she feels locked in the prison of our apartment and her sickness.
If there is anything you can do to help us even if it is to send your support, positive vibes, and educate yourself about this debilitating disease, then please find it in your heart to do so.
It is likely that there are hundreds of thousands of people who are being misdiagnosed and the typical misdiagnoses include, but are not limited to: MS, ALS, Chronic Fatigue Syndrome, Fibromyalgia, Bipolar and other psychiatric illnesses and autism spectrum disorders.
Please visit the following sites for more information and watch "˜Under Our Skin,' a documentary that is currently on Hulu.
Please take some time and read about NY Senator Schumer's Lyme bill:
Please help us reach our goal of having 100 people send Schumer and/or their state senators a message! Here are the links to contact Schumer and the 2 NE senators:
Message to send senators :
"I know someone who has this disease and several debilitating coinfections. They are documenting their struggle on Gofundme.com/mylovehaslyme - Please help Sen. Charles Schumer pass this Lyme bill!"
Thank you all so much. Stay tuned, as I will be posting more Lyme education-related materials in the near future.
Tim, I am so sorry to hear of the difficulties you are all facing with Lyme. I am also in NE, and recently diagnosed with lyme. I have been through the ringer with doctors not diagnosing correctly as well. I wish there was more support. My goal is to get a support group going in S central NE soon. I know there must be more people affected and need some encouragment. It is devastating, not only on us as the patient, but our loved ones/family/friends as well. I wish you healing. kris
I too have lymes disease... I don't have anything monetary to offer as you know lymes treatment is expensive and I too am barely squeaking by. I will offer you my thoughts and prayers. May you find healing soon. Linda
My mom was bitten in the brain stem by a tick in approximately 1996. It took her 6 months to figure out what was wrong with her (she's an RN) and another 6 months to convince doctors because "we don't have Lyme disease here". We almost lost her, but the good news is that she's doing pretty well now. She went to a doctor in New York, who's since quit practicing, but also went to Dr. Kobayashi in Omaha (an immunologist). She had a doctor at Mayo tell her the "she's making it all up". I'm sure that you can identify with how horribly frustrating that was. She got hefty doses of B weekly, tons of meds, and switched over to an organic diet, which to this day, is very important. She has permanent brain damage and still has seizures, but she has a wonderful life! She still continues to heal day by day. I'm praying for you and hope that she's improving. Hang in there! *hugs*
My best friend has equally severe Lyme and I know the struggles very well. Just wanted to leave word that you are not alone.
You are not alone. Please, though...be aware that many believe this disease is never "cured" and can be passed to children in utero.
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I had no idea, Tim. My brother had a mild case. I hope that you can get some relief.
Tim, I am going to forward this to Peter's cousin who lives in San Francisco. She is recovering from Lyme.