Jesse Ruben’s Battle with Lyme Disease
By Tiffany Salmon
Jesse Ruben is a New York-based singer/ songwriter with a popular song called “We Can,” which he wrote after running his very first marathon.
The song symbolizes his feel-good, upbeat personality and he intended for it to encourage people to know that nothing is impossible. He carried that belief with him when he ran the New York City marathon every year—raising awareness for people with paralysis. During this time, Jesse was in the best shape of his life. He had no idea that Lyme disease would put his own beliefs to the test.
It started with flu symptoms that wouldn’t go away. He’d just started dating his girlfriend, and a few months into the relationship he was sleeping on the wooden floors of her apartment because it felt cooler than the bed. The flu symptoms would last for a few months, go away temporarily, and then return.
Then came dizziness and nausea. When he went to the doctor and got blood work done, he was told everything was fine. Just a couple of months after he ran the New York City marathon, Jesse had trouble breathing and walking up stairs. The symptoms progressed to brain fog and fatigue. He would spend up to seven hours of the day staring at the ceiling. He would be on stage and forget the words to his own songs—songs he had poured his heart into when writing them. He went to 10 different doctors who all gave him different diagnoses: vitamin D deficiency, depression, and chronic fatigue syndrome, among others.
Jesse couldn’t listen to music, read, or watch TV. His relationships with his family members and loved ones became strained. People questioned whether there was anything wrong with him because he looked “fine.” His family suggested that he see a psychologist.
“I totally was depressed, but treating my depression would have been like cleaning the dishes while the house was on fire. There’s a time and place for it, but there’s a bigger issue going on here,” said Jesse.
Others said he might not ever get better and should learn to deal with his symptoms. He lost career opportunities and his audience numbers declined. He had saved up money for years to record an album, and then had to use it all on Lyme treatments.
“If I’d been sick for another two months, I would have had to move back to my parents’ house,” said Jesse. He submitted $35,000 worth of health expenses to his health insurance company, and they sent him back a check for $18.
A Pennsylvania native, Jesse remembers riding his bike in the woods as a kid. He remembers a time when he was 12 years old and came home with a bunch of ticks on him. Also, while touring and training for marathons, Jesse would run in the woods in many cities all over the country. He’s never had a bull’s-eye rash, so there’s no telling exactly when he was infected. Now that he has encountered Lyme disease himself, he wishes there were more efforts to raise awareness about prevention.
His symptoms lasted for two and a half years. Despite oral antibiotics and IV azithromicin, his symptoms worsened. He finally found a doctor in New York who treated him with a combination of chelation (heavy metal detox IV) and ozone. He says it saved his life.
During his battle with Lyme disease, Jesse had a major identity crisis. Though he considered himself a singer and songwriter, he didn’t have the energy to sing or write. Furthermore, his father and his grandfather were both professional musicians. It was in his blood. However, when he was at his worst, all he could think about was healing.
As soon as he got better, one of the first things he did was write the popular tune “This is Why I Need You,” for his longtime girlfriend who stuck by his side and supported him. Over four million people have streamed the song, and it’s currently playing in every Starbucks.
His advice for people in the Lyme community is to stand up for yourself, whether dealing with family members, friends, or medical professionals.
“If someone is giving medical advice, and you know in your heart that it’s not right, don’t listen to them,” says Jesse. He also says that patients have the right to be angry, especially when their life is on the line. They also have the right to be afraid.
One of the biggest things that helped him was a core group of people around his age who also had Lyme disease in New York City. They would call each other in the middle of the night and get together frequently. Feeling understood is so important when battling Lyme disease, he says Otherwise, you may feel like the world is against you.
Jesse also advises patients to join the MyLymeData project, which collects information about the real-life experiences of people with Lyme disease. Here’s why he thinks it’s important:
“The more information we have, the better. Being able to catalogue symptoms in the community versus what’s being said by some medical professional is important. It’s essential to know what’s happening so that we can know how to make it better. If it had only taken me one doctor, and all my treatments had been covered, that would have saved me so much time and frustration. This is why research is important.”
Now, when Jesse performs at concerts, he makes it his mission to raise Lyme disease awareness. He says no matter where he goes, there’s always someone in the room who either has it or knows someone who does.
In November 2016, Jesse proudly ran the New York City marathon again, this time to raise money for Lyme disease research. He says battling the illness gave him a new perspective, and he doesn’t take something as simple as walking down the street for granted.
Tiffany Salmon is a staff reporter for Lymedisease.org
Jesse who did you go to in NYC for treatment? Meg
The Morrison Center. They saved my life. I love them.
I’m going to the Spaulding Rehabilitation hospital in Boston on June 1st, I hope they are as good:(Boston will pay using my insurance too, does new York?
Beautiful song, Jesse. Thank you for sharing your story.
LYME DISEASE IS BAD IVE NIECE WITH IT . SHES ROUGH LIFE
WOW,this should be spread and passed to all ways of life,whether you live in a city or country, Jungle any where you live. Protect yourself,family, and friends. Also protect ànd wàtch all your animals oñ your property and ones in your living quarters.
I have suffered badly. Ironically, I am an animal lawyer, and got Lyme because of NOT wanting to harm the feral cats that over-ran my rental in an upscale area-celebrity across the street , in million dollar house, also over-run AND showed on the news when he won a HUGE UFC Championship, at $450K+, UFC legalized in NYS thanks to him). My landlord was feeding them for years before moving to NC and leaving a horribly toxic place.
By the time I TNRd them, despite Frontline on dogs, we all got it. HOWEVER, while it was diagnosed in the dogs and treated with Doxy, it was missed in me for 2.5 years until, ironically, couldn’t sleep due to the symptoms e.g. what WAS diagnosed as hot flashes, problems with thyroid meds, I have Shingles. etc. However, I was managing all that, including non-insurance covered hormone implants that provide a steady stream but cost me $1,200K+ a year despite good health insurance, so there was no reason for my suffering. I couldn’t use the TV a month ago, tried working-clients reciving e-mails at 3 a.m. , for a while then when ready to try sleep again, as usual watch something funny for about 40 minutes to lull me to sleep, I went on Amazon Prime and watched the “Curb Your Enthusiasm” episode where Larry haunts Susie Essman to admit he saved her life by telling her to get tested).
SO, PLEASE, everyone be careful!!!!! It can happen to ANYONE-trust me.
carol , I believe i had lyme before the feral cat rescues, but I did rescue so many ferals, and little did I know how sick I could become.
Jesse, do you follow a Lyme’s diet for you to stay healthy? I was diagnosed 3 months ago with CLD and have been on a rigorous non inflammatory diet. So glad you were cureD!
Just an addition to previous comment-I should tell Larry David he saved MY life because that episode, when it came on the night before I was scheduled for blood work, including the usual, Vit D, Thyroid, hormones, etc., made me say “add in Lyme”. What a horrible surprise.
Hello fellow Lymies , I was bit in 1999 ( in California ) and was not diagnosed until 2006 and after 40 doctor and many of them told me that only horses and dogs get Lyme . i finely found a PA that would treat me with the Marshall Protocol and after 18 month of 5 different antibiotics the Lyme and 2 co infections subsided. And now the symptoms are returning …. SO now I am having a VERY difficult time finding a doctor that will accept insurance CASH ONLY and just a office visit will run you 500$ to 1000 $ . That’s not including meds or tests . We need the doctors to step up and treat us like we are real people NOT some CASH COW that usually is poor because of Lyme . This disease will be worst that AIDS and kill more people because of IGNORANCE and MONEY !!! Take care of your self because no one will. Peace
My dog was sick summer of 2016. Finally diagnosed with Lyme disease. They treated with Doxycycline. It is now summer of 2917 and he is still not well. Any suggestions?
Had? Lyme D. last summer 2016. Diagnosed in NJ. Put on Doxy for 3 weeks. Visited family in CT (near Old Lyme) and everyone who has/had Lyme there is on a 4 week minimum of Doxy. Lyme is rampant in that area of the state. I asked my NJ doc for and extra week and she wouldn’t give me the extra due to CDC recommendations. So upsetting. In CT, docs in the know go beyond CDC recommendations to avoid chronic Lyme. I saw my mother’s doctor and he gave me the extra week (had facial paralysis at the time of visit) and tested me for other tick borne illnesses, of which I had one…anaplasmosis. Post meds, I recovered but I still feel light headed (woozy) a lot and a bit foggy in the head and wonder if I still have Lyme lurking or another tick borne illness. I did hit my head and had a concussion back in September so maybe I’m still on the mend from that but I hate that disgusting spirochetes were/are in my body. Anybody else have a similar tale? Good luck with your career, Jesse. Glad you are feeling well. It’s awful that Lyme patients get screwed by lack of insurance coverage. Tick borne illnesses are getting to epidemic proportions. Global warming will make it far worse in the near future.
Random but he’s really hot lol ?
yes, he is….
God bless Jesse I had Lyme’s misdiagnosed by my MD & a PA. I was diagnosed my 2 friends who have degrees in epidemiology (sp)
I diagnosed my own after a couple weeks of rashes, fever, fatigue and loss of appetite. The doctor agreed but didn’t put me on Doxy long enough (nj doc). A CT doctor came to the rescue.
I have an amazing lyme literate doctor who doesn’t charge me more than my co pay of 15.00. Yes. fifteen dollars. He is an amazing doctor and his nurse is just as great. I have a long way to go,but I have to say that the doctors’ should NOT be allowed to charge so much. Is Treatment only for the rich? It isn’t fair, nor it is moral or ethical. I have enough issues keeping up with life, and managing to pay for the treatment medications. I also have herbals, vitamins, and supplements. Not to mention de tox to do. I have sold what I could to pay for medications, charged my cards, and have a way to go, I would say that many people need to search for a LLMD that will take insurance and keep the costs down. Lyme is tough enough, we don’t need to go so deep in debt to see a better tomorrow. Keep the Faith and may God bless. We can do this!
Hello, you must not live in California. Only the rich get help. Tired of the BULLSHEET and lies.
What a beautiful story and song! Your story gives me hope! Thank you! I am so outraged at what is going on with these conventional doctors (they know nothing about the symptoms of Lyme disease let alone think chronic Lyme exists!!) and insurance companies’ greed that I decided to meet with my Senators and State Representatives and, hopefully, the Governor in Pennsylvania and tell “My Story.”
I was living the American dream, after being in the legal field for over 28 years, I decided to start my own business in 2013. I was in the best shape ever and always health conscious! In January of 2016, I wasn’t able to walk up a flight of steps without being out of breathe. I also started having chest pains, stomach pains, indigestion, nausea, achy all over, sore soles, irritability, headaches, dizziness, brain fog, and insomnia. To make a long story short, I saw over 22 doctors and had every test/procedure done only for the conventional doctor to say I had abnormal breathing (was put on oxygen concentrator), autonomic neuropathy, chronic gastritis, and nodules and cysts in every organ (later learned these are spirocetes hiding in biofilm). In July of 2017, I was referred by a customer of mine to her internist doctor in Virginia. He took 18 vials of blood and five days later he diagnosed me with Lyme Disease co-infected with Bartonella and Babesia, SLE, systemic candida and unexplained fever. I was so relieved! Finally, I could get my life back!! Was I ever wrong!! What a nightmare! Thank God, I watched Under Our Skin, and the sequel, Emergence, and started going to a Lyme Support Group otherwise, I probably would be dead by now. I have become so educated about this deadly, debilitating disease. What concerns me is the individuals that don’t have money to see a functional doctor or Lyme-literate doctor? I, myself, am running out of money (I have already spent over $20,000) and I still am very very sick! What is going to happen? One should not have to worry about all these concerns when one is so sick!
I encourage each and every one of you to go to your Senators, State Representatives and Governor to show your outrage about this scandalous behavior and that we care about this injustice! Also, think about filing a medical malpractice case against these conventional doctors so they know we mean business and that they need to become educated about late stage Lyme Disease or chronic Lyme Disease!
We can all make a difference if we do our part! Trust me, I want to help all the other Lymees out there and those who didn’t have a voice (every time I read a story about someone that commits suicide, I cry uncontrollably!!). I have been there myself but now know the reason why I am going through this is to help others. First, we need to get the laws changed and for doctors to recognize the symptoms and become educated about Lyme and chronic Lyme Disease. I am living proof that chronic Lyme Disease exists and there are so, so many others as well!!