TOUCHED BY LYME: Same-old, same-old from the CDC
The agency stubbornly adheres to its party line, denying care to suffering Lyme patients.
The Poughkeepsie Journal—located smack-dab in the middle of one of the most Lyme-endemic regions in the country—has been publishing an on-going investigative series on Lyme disease since last August. The May 20th installment, by Mary Beth Pfeiffer, was entitled “Chronic Lyme—is it real?” Among other things, the article gave details of 3,000 recently released emails showing how federal health officials at the CDC and NIH have been cozying up to one side of the Lyme disease debate—the Infectious Diseases Society of America and its minions—to the detriment of Lyme patients and the doctors who treat them.
Dr. Lyle Petersen, director of the CDC’s vector-borne diseases division, wrote a response to that article, published this weekend. Interestingly, Petersen chose not to address the issues raised by the emails at all. Instead, he devoted his 600 words to underscoring the tired, same-old, same-old CDC position on Lyme disease: most patients are cured quickly, current lab tests are just fine, long-term antibiotics should never ever be given for Lyme disease, blah, blah, blah. He tossed in a few uncomplimentary remarks about ILADS, and then encouraged readers to check for ticks often and avoid areas with high grass or leaf litter.
Here’s what I wrote in the comments section of the Poughkeepsie Journal:
Dr. Petersen, what would you do if your child was sick and getting sicker, and none of the doctors who follow the CDC recommendations would do anything at all to help her? Would you accept that answer—and let your child spend the rest of her life in pain and misery–or would you try another path? My family, and countless families like us, tried another path.
When we wheeled our daughter into her first appointment with an ILADS doctor, we’d already been kicked to the curb by doctors who follow the CDC’s Lyme recommendations. We wondered if our then-teenage daughter would spend the rest of her life in a wheelchair, often bedbound, unable to continue in school because of physical and neurological symptoms, unable to care for herself. It was the only option a CDC-endorsed treatment plan would allow.
Our daughter’s Lyme treatment was slow and difficult. However, after a variety of protocols, including long-term antibiotics, things got better. The brain fog lifted, the pain subsided, and one beautiful day, she didn’t need the wheelchair any more. Now, she’s a thriving, 21-year-old college student—something we barely dared dream about before we stepped beyond the bleak shadows cast by the CDC’s recommendations for her care.
Tens of thousands of Americans face a similar situation every year and the CDC does nothing for them. Worse than nothing. CDC policies effectively deny them access to lifesaving care. The CDC doggedly adheres to out-of-date treatment guidelines and ignores scientific reality. This does as much harm as the spirochete that causes this insidious disease! These public servants who are supposed to protect the public health in fact do the opposite.
So, Dr. Petersen, what’s your answer to my question? Would you deny your child the opportunity for a normal life, in stubborn allegiance to the CDC’s useless guidelines? Or would you try another path?
Click to read Dr. Petersen’s article.
Click to read “Chronic Lyme—Is it Real?”
Click to read Under Our Skin producer Kris Newby’s response to CDC emails.
Lyme disease is a critical public health issue that government officials continue to deny and ignore. Not only do individual people suffer terribly, but society at large takes a hit in terms of lost productivity and increased costs. Adults with Lyme can’t work to support their families, children with Lyme either can’t go to school at all or need expensive special education services.
And here’s the best response the CDC can come up with: If you’ve got Lyme, don’t treat it for more than a few weeks. If you don’t have Lyme, avoid walking in tall grass.
If current CDC officials can’t do better than that, they ought to step aside and let somebody else take over.
Please leave comments on the newspaper’s website and feel free to post a copy of them below as well.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. Contact her at firstname.lastname@example.org.
- June 17, 2013 at 11:38 am
Did the Dr. answer the question? Do you thin he would have lunch with me?
- June 17, 2013 at 12:12 pm
Perhaps Dr. Petersen should voluntarily submit to being bitten and infected by a Lyme tick, wait about 2 – 6 months, go to the doctor’s, and then follow the CDC guidelines and see how effective the small amount of antibiotics they recommend and how he physically feels.
- June 17, 2013 at 1:44 pm
Are insurance companies influencing the CDCs
- June 25, 2013 at 9:04 am
For 7 months I was tested and diagnosed with things like anxiety, syncope, POTS, all because as a high level athlete I collapsed while engaged in sport 2 consecutive weeks. I was one of the healthiest, physically fit men I know. Finally I asked to be tested for Lyme because of all the things that had changed in my life, having to pull a deer tick out of my abdomen the year prior was the most obvious. Sure enough… POSITIVE. 28 days of Doxycycline…. 27 pounds I have never gained back. 28 days of Doxy… a mild improvement to my health. 28 days of Doxy…. NEVER reversed the POTS, syncope, AND Mr. Doctor..of course I am anxious, my body and brain both know something is NOT right. Fast forward to almost 7 years later. I still have the original issues, however, I now have confirmed lab diagnoses of Gastorparesis (a paralyzed stomach), Congestive Prostatitis (Severe and uncomfortable inflamation), Dysautonomic Nervous System Disorder ( my central nervous system is far from normal), and Vaso-Vagal issues. For 7 years I have not been able to work. For 7 years I have not been able to receive the treatment via IV Antibiotics that I clearly need to fight the massive inflamation in my joint and organs. For 7 years I have not been able to play a single sport, and you have the gull, as a “MEDICAL PROFESSIONAL” to be so close-minded that you are unwilling to realize and/or acknowledge that the Lyme Disease Spirochete Bacteria, the damage from it, and accompanying tick-borne illnesses affect each person on a case-by-case scenario??? You sir are an IDIOT putting it kindly. I unknowingly pumped that poison deep into my body daily by shredding deep muscle tissue and working my organs at maximum pumping capabilities, and you and your oblivious colleagues seem to think one course of Doxycycline for 28 days eliminated it all???? Here’s my promise and my challenge to you. I’ll give you my body to research. I guarantee you that if you took one single deep-tissue biopsy you would find spirochete bacteria. How do I know this? Because I cut a part of muscle tissue out myself and saw it on a microscope. They were spirochete, but when I told the doctor, I was almost admitted to a psyche ward. Yes sir… these are the lengths dying men and women will go through to get the treatment they need. Perhaps you should have to feel this pain and uncertainty a single day in your life, then you may have the respect and compassion to start allowing doctors to treat on a case-by-case scenario. OR… you can just continue to be part of the problem and wait until one day a guy like me, with nothing to lose, takes from you what you have allowed to be taken from us. Kinda like “an eye for an eye” philosophy. Either way, your oath was to save lives not idly stand by as people suffer. Please change the protocol, or kindly quit your job and use your sadism for say………becoming a dictator of a third world country, because we don’t need people like you making life decisions for people like us. Thank you and God bless.
- June 26, 2013 at 6:37 am
your comment is so true,it is just the same in Europe. maybe if it was the same as aids we could have world wide attention and charity concerts
- June 26, 2013 at 6:53 am
Dorothy, your letter is brilliant and your story is identical to way too many people’s own stories, ours included. Thank you for responding to “Dr.” Peterson’s letter. I haven’t had the courage to read his yet as I am tired of this childish runaround the CDC is giving our sick Lyme patients. I applaud your courage. Once I get over my recent slump in activism, I promise I will read and respond accordingly! Right now I am dealing with a relapse in one of my sick children. Since we never saw the tick and her rash at age 2 was misdiagnosed as a “spider bite” and not treated, what would Peterson say we should have done to prevent such devastation in her health now at age 15? Four weeks of doxy does not do the trick. Don’t get me started lol!
- June 26, 2013 at 6:05 pm
I won’t be able to post a long comment because I am exquisitely tired, beyond exhaustion from Lyme disease today. My fingers hurt so much that trying to open the cap off of a water bottle is too much pain and I cannot do it. “Dr”Peterson let us change bodies, positive western blots for Lyme disease and 8 straight years of antibiotics have helped but not cured my “persistent” Lyme disease. Antibiotics still help so how do you explain these things away and sleep at night? Meanwhile the rest of us DO NOT sleep but not because of bad conscience but because of a persistence of infections and bad medical decisions.
My heart goes out to all who have contracted this illness, God come and bless us, please.
- June 27, 2013 at 6:22 am
Here is the copy of the letter I wrote. I also sent it along to Dr. Petersen’s email address LRPetersen@CDC.gov. I hope everyone sends in their opinions. Admittedly, it took me several days to muster up the wherewithal to do this! But it is worth it to try to get our side of the story out there! Thank you again, Dorothy for providing the links above and for you activism.
Thank you, Dr. Peterson, for emphasizing how prevention is key. This is so true! What can the CDC do for people who already exist, presently suffering from late-stage Lyme and co-infections? I’m not talking about “post treatment syndrome”. I mean we who were never treated in the first place because we were un/misdiagnosed by our doctors in the early stages, when a few weeks of doxycycline could have helped. What can you do for us? Those of us who did not present with a classic bulls-eye rash and did not see the tiny tick? Those who now have CDC-positive western blots? Those who have had to quit school and jobs? Dorothy said to the Wizard of Oz, “I don’t think there’s anything in that black bag for me.” Does the CDC not have anything to offer my loved ones, my neighbors, friends, friends of friends, relatives of friends and relatives? Those who are referred to me for advice? I tell them to seek help from ILADS or alternative practitioners because the CDC and IDSA have failed my own family. There is nothing in that CDC/IDSA black bag for us. A few weeks of doxycycline will not help now. It is a sad, rude awakening to realize this fact. Perhaps China, Canada or another country somewhere will surpass the USA in funding research for better treatment and a cure. When that happens, our citizens will go running, limping, and wheeling in that direction. There is still time to help us, Dr. Peterson, and to make the USA the leader in top health care for all citizens. Even those with late-stage Lyme disease.
- June 28, 2013 at 2:55 am
I just don’t get it. So many ill and this country cannot handle our increasing population of sick and disabled. How can they not “get it”? The CDC is burying our people, and those of the WORLD that take their word and policy as truth. It just makes you wonder what their objective is? Lyme and other tiny bacterium and pathogens is like the new cancer. I truly believe that. It will soon surpass not only AIDS, but many other diseases. Already, science is proving the connection with MS, Lupus, CFS, Fibromyalgia, Alzhiemers, ALS, Autism, and other diseases that have no proven cause or cure (just certain test “markers” that might lead them to diagnose those diseases). How can something so elementary be overlooked?
As tiny bacterium immobilize our babies, children, teens and adults, a specific “GOD syndrome” group of people (humans?) play games with those lives and hold back treatment. I’ve always wondered that same question…WHAT do the higher-ups, the rich, the so-called powerful of our world do when they or their own get infected? What do THEY do for treatment? Better yet, considering the destructive and swift path of these tickborne and other pathogens, HOW are the rich and famous possibly dodging it? Does their money and power make them immune?
They will be made to answer in due time. At some point they will be held accountable for the sick, the suffering…the dying, the blatant murderous neglect. Drones of people are shedding their trust in docs that neglect and ignore, and are sick enough and SMART enough to fight. They can take our jobs, our education, our energy, and place wheels beneath us. But they can never take our voices nor our dreams of wellness and health, the one human “commodity” that can’t be bought. They will NOT take our right to fight, to LIVE! What do we have to lose, they can only kill us ONCE!
Our country was based on free enterprise. People with common goals are already bound together to fight for these rights. Doctors, researchers and patients with hearts intact HAD to start this crusade decades ago when it was clear that our medical system was not working. (not only regarding Lyme) It is apparent the system is broken by greed, like tin men of OZ… those members of the CDC, the insurance industry and a select group of docs who cannot for some reason admit they got it wrong. The IDSA, the ones who herald themselves as “Lyme specialists” hold tight to “their” disease in jealous depravity when other medical MD’s with the SAME degrees who have taken that SAME oath, are trying to get it right. They laugh and name call. Taunt and bully and manipulate, like spoiled little children. They lie to the public as they try to protect themselves, and feign care, asking people to trust. How can we? We are all SO very sick. Our leaders, those paid to protect our public only give lip service and have forsaken us. We waited for decades for the calvary to come and save our wounded and dying people…we know we must find another way to freedom. Our country’s delegated medical leaders…those that WE Americans are paying salaries to, have turned their backs on us to protect their own interests. They seem to like a vulnerable, sick, and disabled population. Why? It just makes no sense? Could pride and ego, payoffs and medically CAREless beings (?) be THAT inhuman? What is the REAL story here?
I am a mom of 6, sick now for over 12 years, not allowed to go outside my insured group to find answers. But I finally did. My symptoms and even my tests SCREAMED Lyme, but those tiny hoops to jump through did not allow a crucial swift diagnosis. And no matter, the treatment guidelines are so “too little too late”, that it would have made no difference at all. I was unable to walk at one point, cast to nursing care for several weeks, and bound to bed and wheelchair. In 3 months my ILADS doc had me up walking and thinking again. They tried to terrorize and immobilize him. Like a punishment for doing the right thing and doing what WORKS for so many. My family, my children and I…we owe my life to docs like this.
I do challenge each and every doctor and government healthcare worker who truly believes that these infections are so easy to treat, be used as guinea pigs and infected voluntarily and see how they fall. When a mere palm full of pills is given THEM for a few weeks fails to treat or cure, and destroys them and destines them to a lifetime of NO life, but suffering daily hell.
- July 2, 2013 at 12:05 pm
It is time to kick these CDC guys to the curb.
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