TOUCHED BY LYME: Letterman and Stiller, you guys are WRONG
Actor Ben Stiller discussed his knee problems and the fact that he hoped it was Lyme disease (since he seems to think that’s a minor problem) on the David Letterman show. Letterman and he also both agreed that Lyme wasn’t a California problem, just an “east coast thing.”
An open letter to Actor Ben Stiller and talk show host David Letterman:
Ben, sorry about the knee. Hope you and your panel of experts get it all figured out. Although you seemed delighted at the prospect that it might be Lyme disease (since you seem to think that’s a minor, easily corrected problem) for your sake, I hope it isn’t. Why? Because I like you. I wouldn’t even wish Lyme disease on my worst enemy, and I certainly wouldn’t wish it on a nice funny guy like you.
I gather from your conversation with Letterman that your son had Lyme disease last year, and apparently, he got all better from that “Lyme medicine.” Do you know how lucky you are for that? First, that he was even given “Lyme medicine” at all? (Do you know that the standard Lyme treatment guidelines actually deny treatment to many people with Lyme? It’s true. Check out Lyme Policy Wonk for how the Infectious Diseases Society of America has a stranglehold on the diagnosis and treatment of Lyme disease, and how it kicks many very sick people to the curb.)
You and your son were also lucky because a short course of “Lyme medicine” apparently did the trick. Because a short course of antibiotics is all the IDSA guidelines will allow, no matter how sick your child is. Even if the medicine is helping but hasn’t quite finished the job yet. (Many Lyme patients get their treatment yanked by their doctor or their insurance company, because the guidelines say it’s time. But you know what? Those pesky spirochetes can’t read the guidelines, and sometimes they’re still in there causing trouble.)
And Dave, I had to wince when you made such a point out of saying Lyme disease isn’t a problem in California, only on the east coast. Actually, the ticks that carry Lyme have been found in 56 of California’s 58 counties. And some of our counties have as high a tick-infection rate as some of the worst Lyme hot spots back east. Lyme and other tick-borne diseases are in fact a significant problem in many parts of our state.
Unfortunately, Dave and Ben, when influential guys like you two say on national TV that Lyme disease isn’t serious and isn’t a problem in California, you do a huge disservice to the public. And you trivialize the suffering of untold thousands of Californians (and others) whose lives have been profoundly affected by this serious disease.
I’ve thought of a way you can make it up to us. May is Lyme Disease Awareness Month. I’m personally inviting both of you to film a public service announcement about Lyme awareness to air on the Letterman show in May. How about it?
Dorothy Kupcha Leland can be reached at dleland@lymedisease.org.
Bravo, very well said. Ben Stiller, I implore you, to research and inform yourself regarding Lyme disease. It is in all 50 states, Canada, and other countries. A good source of information can be found at ILADS.com. Also, find your and your son a Lyme literate medical doctor. All I want for you is that you fall upon the same fate as I. Lyme disease can be cured if it is quickly diagnosed and treated. Please inform yourself for the safety of your son. He is too young to suffer the same fate as many others who continue to suffer every day.
I thought I was lucky I found the tick, had all the symptoms, incl the bulls eye rash. Had standard regimen, felt better, two wks after I finished my antibiotics, I had the symptoms again, was refused add'l antibiotics, within the mo I was completely debilitated. Finally, I rec'd 18 mos of antibiotics and have been able to regain some of my life. But, now eight yrs later, I still have residual symptoms. Please don’t take Lyme Disease too lightly. The doctors refused to even acknowledge it was Lyme Disease. You may want to seek the advice from Daryl Hall or Lauren Brooke. Wish you and Your son all the best.
Somebody emailed CALDA and asked for these remarks to be added to the comments section:
Ben,
Let me elaborate. Not only all of the above, but it is actually worse. For example, many physicians avoid Lyme patients because of the controversy. Controversy? Yes, Dr's that start helping those who have Lyme, myself included, often are harassed by State Medical boards.
For example, should your son relapse, or get infected again, you would seek out the best Dr in the country. If you really did your homework you would find that Dr Charles Ray Jones, in Connecticut is at the top of a very short list of Pediatricians that know what they are doing.
Dr Jones has had multiple encounters with the Connecticut Medical Board. The complaints were not even from the principle care givers of the children, but he has had to spend huge amounts of money defending himself. In fact, I invite you to assist Dr Jones' so that he remains practicing, and helping kids with Lyme.
Ben, I thought I might mention that there are many of us in the U.K. also suffering from this terrible disease, it is a world wide problem.
Hard to catch and easy to cure, If only that were true.
Please take time to educate yourself and your family about the true reality of Lyme and its co-infections.
You might also benefit from watching the film Under Our Skin.
I wish you all the best on your journey to good health.
dave should be careful. the last guest he had on who admitted he had been diagnosed with lyme and was cured by the "lyme medicine" was Michael J. Fox and we all know how well that turned out. a parkinson's (mis)diagnosis with i a year.
This just makes me so sad. More and more people are turning up with Lyme disease, and I wonder how many people have to become disabled or die before the government starts funding research on how to diagnose treat and cure it. What is it going to take, how many more of us have to die before this happens?
Only caught the last part of the interview where Letterman and Stiller discussed ticks and Lyme Disease. Dave did describe Lyme Disease as "hell on earth"
lyme arthritis is a bacillary infection caused by a spirochete of some sort. One tick bite many years ago and the bacteria can still live in the body. One spider bite many years ago and the bacterial can still live in the body. The bacteria makes its way into the synovial fluid which protects the bones and joints and is in every area of the body. It does not require oxygen to thrive. It is not contagious unless the same critter bit both people at the same time. It HURTS! It eventually effects the central nervous system, bones, teeth, even after it has been brought under control. Many years later people need bone replacements as the infection never really seems to go completely away. There is not always a high grade temperature with an infection that does not need oxygen to thrive. Sometimes the temperature is below normal. Ever think about the bacteria that lives in the dirtiest cavity on your body, your mouth? Under the teeth? Bone loss, In the mouth? You guessed it. It's an anerobic bacteria that does not require oxygen to thrive. Dave Letterman is right, it a " hell on earth." Lyme Disease experience, as the spine becomes inflamed with a bacteria that comes back in blood serums as a false negative with positive antibodies. Eventually causing a person not to be able to walk and needing much therapy. It's similar to meningitis, without a temperature. NOTHING FOR the insurance companies not to cover. Nothing for the doctors to shrug off and tell a patient it's all in their heads. These people are living in their bodies and know the pain that is being caused as the protozoan (sp) are attacking their bodies. It affects children and adults so it is not transmitted sexually.
I will reply to one of your statements: “It affects children and adults so it is not transmitted sexually.” Lyme spirochetes have been found in vaginal secretions and semen so there is no reason to believe that it cannot be transmitted sexually. It can also cross the placenta when a mother is pregnant and transmit to the child. Of course, any age can also be bit by a tick. So…until further research proves otherwise, I believe it can be transmitted sexually. Your other comments were very well-stated. Thanks!
I was diagnosed with Lyme in 1992 after over a year of going from one specialist to another. Thank God, one doctor moved out of the box and sent me to doctor in the city. I was on antibiotics over 1 year and still suffer from the central nervous system diseases and depression. So, Ben and Dave (I am a fan of both), why don't you read up on the disease before you make such cryptic comments.
I hear/read all of you guys! A sufferer of Lyme disease and co-infections myself for over 25 years, this hell just never ends. I so wish someone would speak out for us and make a difference. We need respect and a whole lot of money to get healing/our balance back and the time for that is now!
I wanted to say that lyme disease if not caught early and/or not treated appropriately (with enough antibiotics) lays dormant in your body and yes it can infect the brain, spinal cord, heart and in fact any body organ. This is coming from a person who has been infected for over 25 years. Mine was not caught early when I was probably 17 or 18 years old, I had symptoms of some disease back then that Dr. could not figure out. Click ahead 25 years and I was reinfected. Now within the past 3 monhts my symptoms are almost parkinsons's like symptoms. In fact, you would think that I have early parkinsons, slow walking, chin tremors. knee tremors and very difficult balance issues. You figure it out!
2002 to 2006 no treatment neg lyme test,2007 5 brain lesions from lack of proper treatment!2011 full time in wheelchair,paralized waist down!!!!!!!!!!!2010 igenex labs,calif positive for lyme and cdc positive!to late!
Ben
My advice.
If you and your son heal well – congratulations. You beat the beast.
If the symptoms come back and your treatment options run dry as they do for thousands of us east coasters every year, then I wish you the best but also ask that you become a vocal advocate for better Lyme treatment. We need people whose voices can actually be heard.
Best wishes to MJ Fox and L Ronstadt and all the other folks who have had their lives changed by Lyme.
Tom Lamparski
Schenectady, NY
They should know what Californian writer Amy Tan has to say about this…
Oh Boy.. what IGNORANT MEN and their comments! You can tell that they have not come into contact by ear, eye, or friend or family that has been horribly affected by this disease. Ben Stiller has no idea what he has just put out in the universe by saying what he did. My revengeful sinful heart would wish malice upon them for these comments, and yet I wouldn’t wish this on an enemy as well, because it is from the PIT of hell!! I Pray for them that their words and cavalier attitudes don’t come back to haunt them, cause things like that have a way of happening. God forgive them, they have NO IDEA of what they’ve said.. ..what fools!
I would not be so confident that this short treatment of antibiotics has cleaned up your son health issues. Persistent Lyme is also an issue and we pray even stronger that your son will not be forced to suck his future Thanksgiving dinner through a straw. This is serious and making light of it shows that you have not done your homework about Lyme and your son. My wife I am a Lyme sufferers at 60 yrs and advocates. Go to http://www.ilads or the Lyme disease assoc. or at the very least my web/blog for more info.
Ben Stiller
Your as clueless as the characters you play…surprising since you and your sons lives are at stake.
Huge Fan of you both. In fact, that smile you bring to many was the smile I so desperately longed to see on my child’s face. 1 year lost but we are on our way to recovery. I too underestimated the disease until my honors physics, English, French daughter couldn’t read or add. 8pm every night we could expect restless leg and tremors and tears. A chest catheter for 6 months. Orals to follow but she is 80% better. Everyone deserves this chance to heal. DONT UNDERESTIMATE – rather – ADVOCATE
David should know better. He’s had Lyme. Good grief.
Please use your money to help in research for Lyme. Those of us who have it and know the truth about it would appreciate you being able to help others know the truth and give hope.
I fully agree with the above. I’ve been struggling for over 2 decades, and this isn’t easy to cope with.