Watch Ally Hilfiger’s speech about her Lyme disease experience
Ally Hilfiger, daughter of fashion mogul Tommy Hilfiger, was bitten by a tick when she was seven—and her life was never the same again.
She developed serious physical and psychological problems, and was variously diagnosed with “growing pains,” fibromyalgia, ADHD and multiple sclerosis. Many treatments were tried. Nothing helped.
After a psychotic episode landed her in a mental hospital at age 18, she was eventually diagnosed and treated for Lyme and other tick-borne diseases. She recounts these events in her memoir Bite Me: How Lyme Disease Stole My Childhood, Made Me Crazy and Almost Killed Me.
What follows is a moving presentation she gave at the 2017 Focus on Lyme conference in Arizona.
This is sinful to let us suffer like this with no help, no money left, and drs don’t recognize the symptoms. This shouldn’t happen in 2017 in the USA! Thousands of people are getting diagnosed daily and ever way you turn is a battle. Battle to get a IV, medication for pain, money for supplements, medications, ect…and even a proper test.. Someone needs to help us all, So many homeless, broke and sick. Living in cars, suffering, and no place to turn. Even the ER dr’s turn us away and tell our familys we have mental issues,,
This is a sin!
Dianne, my heart goes out to you.
Most developed countries have universal healthcare. So no one pays for insurance, which is unaffordable for most Americans since the premiums are high and employers don’t offer health benefits. I still can’t understand why Americans are not willing to a pay a a slightly higher tax rate so EVERYONE CAN HAVE ACCESS TO HEALTHCARE, including dental work. It’s a no-brainer to me.
We have become desensitized to suffering of others. As an American I can only say that I’m ashamed to see unemployed people living out of cars with kids. They are hand to mouth. Very few safety networks exist for support. I urge people to lobby for universal healthcare. We must reclaim our humanity. But that seems difficult in today’s world.
I suffer myself from Post-Lyme Syndrome. It’s expensive and frustrating dealing with it. Most people, including doctors,are clueless about ravages of Lyme disease.
We can create a fund to provide medical care for those in need. It’s something that we can start a debate on right here. I want to help.
Farida, I agree with your observations about our culture. We have become insensitive to others suffering for many reasons but in regard to health insurance specifically, Americans consider it an asset that measures success like owning a Mercedes. Insurance has evolved as an asset that only the wealthy can afford and hence, a status symbol of financial wellness, intelligence, education and more. As someone who doesn’t have insurance, I can tell you that the discriminatory comments and looks from medical staff are degrading and disgusting. People look at me as if I’m lazy, uneducated, stupid and a welfare moocher. Years ago, I chose not to have health insurance and to save my money each month because I realized that it wasn’t benefiting me to have it and in fact, was making my husband and I sick! Insurance creates the illusion of a safety net and granted, sometimes it does benefit a patient but in my case, it never did because it was forcing me to use a corrupt medical system and the doctors who worked within it. That said, I believe that everyone should have access to non-profit healthcare in a single payer system. Not only does it reduce competition and corruption but creates better health outcomes because doctors can focus on care vs productivity and we will all become healthier but that isn’t going to happen in our current for profit medical industry.
Well said, Liz.
You’re right. ‘Gold Standard’ health insurance is a status symbol! How appalling. Having lived in a number of developing countries, I have found that basic healthcare is free or subsidized. Government hospitals may look like abbatoires BUT they cater to every patient, no one is turned away. I’ve seen patients who come from far-flung rural areas waiting in corridors or sleeping on the lawns. They are fed by local charities or empathic individuals. Or the hospitals. We have got it all wrong! As long as medical, pharmaceutical and financial CARTELS run our country, the future seems dim. This is may indeed be our darkest hour. So far!
Since Lyme is going to mushroom, given global warming and lack of natural predators of vectors, it’s vital that populations be made aware of the horrors visited by Lyme. We need more fora to raise awareness and perhaps money for the needy. Prayers for all.
Heart-wrenching. Thank you for sharing your story. I hope the medical community will have a breakthrough soon. Lyme and co-infections are a scourge and will only get worse with a warming climate.
I have had Lyme disease since a tick bite in 2012. It wasn’t diagnosed until late 2015. The BB had a field day infecting my body. Just like so many of us, it affected my muscles, joints, nerves, brain etc. The intense pain was the worst. My left leg suffered paralysis. I couldn’t walk on it at all. I began BX protocol in April of 2016 and it has been a life saver. I feel well with the exception if the left leg of which I now have almost full function. It keeps getting better every month. I couldn’t afford the treatment but I was awarded a scholarship to cover half the cost by Delta Institute. I wish more people knew about BX protocol and Delta institute and were able to get well too.
How did you afford that, my kids are supporting me and my 600-800. a month of supplements. If I am able to get disability will only get 400 month. Been denied twice already. Sick since 2012
I can’t stop crying. For me to imagine a child enduring what we have is quite traumatic for me. I know it is for Ally as well because her final statement was that she hopes that every parent will have the wisdom and the resources to be able to help their child. Ally truly has such a gift for accurately describing the symptoms without a load of drama that often causes many doubters, including doctors, to shift blame onto ‘ hysterical hypochondriacs’.
I’m so frustrated because I’m having horrible neurological symptoms now, Several of my cranial nerves are compromised and causing horrible pain. I can’t work, have no money, no family and not a single friend. I can’t afford any insurance but mostly because my ethical trustworthy doctors don’t accept insurance and I can’t afford to pay them AND insurance that I won’t use unless I need extreme medical care and even then, a high deductible doesn’t help me.
YES, THIS IS A SIN, as Dianne wrote. Americans’ tolerance for immoral, unethical and unjust/lawless government institutions is most disturbing to me. As my mentor, Albert Schweitzer once said, ‘ The only way out of today’s misery is for people to become worthy of each other’s trust.” We will never become worthy of each other’s trust in a culture and economy that focuses on competition. When we can’t trust our leaders, our teachers, our scientists, our doctors, our neighbors and in some cases, even our own parents to do the right things, we end up where we are today- in misery- without any accountability. America may be the wealthiest country in the world but it is in my opinion the most spiritually bankrupt. Sinful it is.
Amen! So well said. Thank you so much!
Also, just a brief note that my 36 yr old daughter with 3 kids was just diagnosed, along with my brother from florida, and am having my youngest grandbaby tested that had the bullseye a yr ago, only to be told by the ER dr in Venice Fl. There is no lyme in Florida. and they took her to Sarasota ER next day only to be told she ws too young for treatment that it would stunt her growth.. One yr later…
Jesus Please help us all!
I’m sick of being sick with Lyme and I hope more celebs speak out about their battle as nobody is listening to us little people.
Lyme had been ignored for too long and the CDC has minimized it’s impact. My sense is we may be turning a corner, but we need better diagnostics to detect Lyme. So many are diagnosed with other ailments, when Lyme is the problem. Increased awareness will help so much. Thank you Ally for speaking up.
My heart cries for you. I hope my road is shorter. Lyme or what ever is steeling my Golden Years ( I’m a senior citizen).
It all started just 18 months ago. Two months after getting sick I tested possitive for Lyme Disease, received 21 days of doxycycline. I didn’t get better for more then two or three day. After being sick for six months I saw an Infectious Disease Doctor. After being sick for six months and testing positive for Lyme I told her I had Lyme disease – what a horrible mistake that was! She said she believed me that I wasn’t feeling well BUT SHOWED ME ON THE CDC SITE THAT CHRONIC LYME DISEASE DID NOT EXIST (NOVEMBER 2016) !!! It has been down hill sense then.
That’s just the begin non of my fight. I did have two good months when seeing a Naturopathic Doctor. Problem: MEDICAL INSURANCE! I’m paying Medicare and ARRP for over 100% coverage (plus being a Veteran) BUT THEY WILL NOT PAY TO SEE A NATUROPATHIC DOCTOR. Anyways that is where I am – Senior Citizen I can afford to pay for insurance plus pay for doctors and medication. I’ll be changing insurance companies.
First I want to say that Ally you are such a beautiful person. I can so remember Tommy and Susie bringing you in the store after the Christmas parade to see your grandfather. I worked in that store. My granddaughter had a tick on her when she was three. We saw the tick and took her to the doctor right away to have it removed which they did. The tick was removed from her arm. Not too long after that she developed a rash on the inside of her thigh… no Bulls eye. When she was taken to the doctor they sent her for blood work and was tested positive for Lyme. She was put on an antibiotic for a month and told us she would be okay. I often wonder if this is something that could affect her down the road