TOUCHED BY LYME: Lyme patients need treatment options
The Institute of Medicine, part of the National Academy of Sciences, is in the midst of taking a look at Lyme disease. In April, the IOM heard from various scientists. Today, the IOM committee held the second of several "listening sessions" via telephone conference call, which allowed Lyme patients and advocates to offer their opinions as well. Here's what I told the committee.
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(Remarks delivered by phone conference to the Institute of Medicine on June 15, 2010. Note: there was a 3-minute limit on public comments.)
Five years ago, my then-13-year-old daughter became seriously sick and disabled. First she needed crutches…then a wheelchair…then became completely bedridden. Yet the top medical experts we consulted couldn’t put a finger on what was wrong, and offered no effective treatment.
We wondered about Lyme disease. But the specialists refused to even consider Lyme in the differential diagnosis. Why? The answer was always some form of “Because it couldn’t possibly be Lyme disease. Period.” I later learned this viewpoint was based on the very narrow definition of Lyme put forth by the IDSA guidelines. Also, Lyme has become a political hot potato, and many doctors choose not to engage with it at all.
As our daughter’s health continued to deteriorate, we finally stepped outside of the medical mainstream…and she was diagnosed and successfully treated for Lyme and two other tick-borne infections. After more than three years in a wheelchair, too sick for school or anything else, she got her life back. Now she’s walking, driving, and last week proudly graduated from high school.
As a Lyme disease support group leader, I hear similar stories all the time. Patients with many of the symptoms of Lyme disease are told by their doctors:
- there’s no Lyme in this county
- the tick wasn’t attached long enough
- that bull’s-eye rash is actually ringworm
- that positive ELISA test was really a “false positive”
- your symptoms are merely “the aches and pains of daily living.”
Yet, many of these people—like my daughter—are ultimately helped by long-term Lyme treatment.
The scenario for people with breast cancer, or leukemia, or heart disease, is very different. Those diagnoses come with treatment options. Patients choose which treatment they prefer—more aggressive, less aggressive, watchful waiting. Lyme patients do not get treatment options.
Why should Lyme patients be systematically denied access to medical care that could vastly improve their quality of life? Especially when the only alternative is to continue to drown in pain and misery?
The recent IDSA Lyme review panel chose to ignore hours of testimony and hundreds of pages of documentation that showed that Borrelia can be a persistent infection, and that many people are helped by long-term treatment. Yes, the science of Lyme is still unsettled. There is still much to learn. But why deny people the chance for a better life in the meantime?
You can contact this blogger at dleland@lymedisease.org.
Your story is just like mine. Ironically, I was a Senior Fish and Wildlife Biologist with a government agency when I became infected and I had a number of colleagues that had contracted Lyme over the years so I immediately suspected this as reason I was sick yet I met a WALL of dis-believers from all the specialists I went to (infectious disease, neurologists, rheumatologists). The Infectious Disease Specialist, a graduate of UC Davis Medical School told me he didn't think Lyme was in California.
I was tested at least 10 times (at my insistence) thru the standard labs in California and they never showed positive for Lyme which just gave the Doctors ammunition to say I didn't have it despite all the classic symptoms – I later was told by one Doctor that practice policy at their facility prohibited them from treating me if the lab results were negative even though the CDC guidelines specifically recommend treatment based on symptoms, not lab results. So the current standard treatment system makes a perfect Catch-22 – Standard labs are ineffective for testing Lyme and co-infections and the Doctors won't treat based on symptoms yet they are protected from liability due to the false negative tests.
I eventually went to a Lyme Literate Specialist (only a handful across the nation) and I was tested through IGENEX labs. Very strong CDC positive test.
I am now being treated and living each day at a time, hoping I will go into remission. My illness, the devastation to my like and my family members, it was all so easily preventable at each step in the process if ONLY the Doctors were aware, willing, the labs tests worked, the standard treatment options reflected the experience and expertise of Lyme Literate Doctors.
I hope, pray the Academy of Sciences and make a difference in how this disease is being diagnosed and treated. I WAS on an Academy of Sciences research team before I became ill and had to take a disability retirement so I know how this process can be an effective tool in shifting policy and regulation which is much needed here in the US and world-wide.
God bless and PLEASE to all the team members, examine the facts, talk to the real specialists, dig deeply into this issue and don't hesitate to form strong recommendations. We need your help NOW.
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