The Politics of Lyme Disease

When will Pennsylvania, one of the states affected most by Lyme, stop doing so little about it?

By Tara Murtha
Add Comment Add Comment | Comments: 33 | Posted Jul. 7, 2010

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Anyone familiar with Lyme Disease knows that getting correctly diagnosed and sufficiently treated is a crapshoot, even here in Pennsylvania, where local health officials recently announced the number of Lyme cases has increased for the fifth straight year—an estimated 80,000 cases statewide—with most concentrated in Southeastern Pa.

As someone repeatedly misdiagnosed despite presenting a classic constellation of symptoms, I can tell you most local doctors couldn’t identify a case of Lyme if it bit them in the face. And since the standard test boasts an accuracy rating about as effective as a coin toss, it’s often left to drill deeper into the nervous system, where it can cause crippled limbs, impaired cognition and constant nerve pain. It can be fatal.

It’s difficult and expensive to find treatment that helps chronic Lyme. I drove an hour an a half to visit a “Lyme-literate” medical doctor (LLMD) because Philadelphia has a notorious dearth of LLMDs, and my doctor was willing to prescribe the only treatment course I’m aware of that can help: long-term antibiotics.

Some doctors believe long-term antibiotics help eradicate advanced or chronic cases of Lyme and common tick-borne co-infections. Others believe that chronic Lyme doesn’t exist at all and that long-term antibiotics has no benefit.

Two separate medical associations exist because of the divergent views: The Infectious Diseases Society of America (IDSA) and the International Lyme and Associated Diseases Society (ILADS). The Lyme and Tick-Borne Diseases Center at Columbia University wrote, “Both sets of doctors are practicing medicine in a reasonable fashion based on the application of certain diagnostic principles.”

Here’s the core of the problem: The IDSA, the camp that says chronic Lyme doesn’t really exist and long-term antibiotics don’t help, writes the guidelines that most doctors follow. So doctors like mine risk their medical licenses for prescribing long-term antibiotics, even though they see patients regain health.

The debate can be gussied up in the rhetoric of scientific rigor, but it’s about money: Insurance companies often use these guidelines to deny coverage.

Then there’s the fact that at least three independent investigations concluded that IDSA board members have financial conflicts of interest with tests and the insurance industry.

It’s a vicious whirlpool of suck, with patients drowning in the middle.

But there’s a glimmer of hope in Pennsylvania. Two weeks ago, for the first time, Harrisburg hosted public hearings for a landmark piece of legislation that could help Lyme patients.

Senate Bill 1199 would establish a task force toward prevention and education of doctors and the public. It would also protect doctors prescribing longer-term antibiotics from sanctions and mandate that insurance companies cover the treatment they determine is best.
It’s a big deal. Lyme legislation has never made it this far; similar bills have died in Committee for years. Issues were aired, but ultimately progress was hamstrung by a flagrant display of politics.

The room was packed to standing-room-only with jilted Lyme patients. One by one, they stood up and testified how Lyme shattered their lives, how they spent their life savings seeking treatment.

State Sen. Donald White, chair of the Banking & Insurance Committee, had the reaction most people have when they first enter the rabbit hole, learn how serious and complicated Lyme Disease can be and that patients are so underserved.

“I’m just amazed,” he said. “This is very eye-opening to me.”

Next up was Stephen Ostroff, acting physican general for Pennsylvania. Ostroff is chief advisor to the Department of Health on medical matters relevant to Pennsylvanians.

Thing is, he had nothing to say. Right upfront, he announced that due to conflicts of interest he would not testify in any meaningful way (though he was happy to keep talking).

Ostroff essentially said that his role on a committee with the Institute of Medicine was more important.

“While the committee is doing its work, members are expected to refrain from expressing opinions that could affect the outcome of this particular committee,” he said.

“The second issue is that I am a member of the state Board of Medicine and one of the sections of the bill deals with imposing restrictions on the authority and functions of the state board of medicine … I have an inherent conflict,” he added.

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COMMENTS

Comments 1 - 33 of 33
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1. Jeff Daniels said... on Jul 7, 2010 at 09:52AM

“Diagnosed with Lyme Disease? There are several researchers trying to learn more and improve the testing. You can get paid if you have Lyme Disease to donate blood samples for that research. Studies can be found by googling companies like SeraCare Life Sciences or Biospecialty Corporation”

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2. lymeaction pa said... on Jul 7, 2010 at 12:08PM

“It is absolutely crucial that the science be addressed, there has been ample research demonstrating persistence of infection. The issue here is one too often seen in medicine - early views based on limited understanding become dogma, and in this case get caught up with "interests" that stakeholders have in maintaining that definition. Basic science is exploding in Lyme (Borrelia Burgdorferi) for a reason - it is the most complicated organism known to science, and we don't yet have a good defense against it, or treatments to fully "cure" it. Current treatment of 2-4 wks of antibiotics has led to 35% failure in early lyme (if you're lucky to catch it early), and anywhere from 65-93% failure in late lyme. We would never accept such dismal results in other illnesses - all in PA should be outraged - our children are being debilitated by this disease with a blind eye turned. See www.lymeactionpa.com for hearing link - hear the real Lyme story. If you have Lyme, contact LymeActionPA.”

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3. TickedoffinPA said... on Jul 7, 2010 at 09:21PM

“I am praying day and night for SB 1199 to pass. I know Senators Greenleaf and White heard our pleas that day. The time to act is now! It took 21 years for my diagnosis. How long will it take for your (or your childrens) diagnosis if this bill does not pass? If the insurance companies do not want to pay for our treatment they should get out of the business!”

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4. Roses Madrigale said... on Jul 8, 2010 at 06:35AM

“Tara Murtha has helped so very many people affected by Lyme-
her unrelenting investigations are extra-ordinairy!
This article should start every newscast!
Thank you Tara and know we are so grateful for your hard work!

roses madrigale”

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5. Donna in Clarks Summit said... on Jul 8, 2010 at 07:57AM

“The argument that there is no proven course of treatment is deceptive, implying that there is ONE course of treatment out there. Truth is, lyme disease and related infections are tricky infections that hit each person in a different way. There will NEVER be a successful across the board cookie cutter treatment.... this is NOT a cookie cutter illness and it requires individualized treatment approaches.

The argument that "there is no proven course of treatment" also speaks to the IDSA's recommendations... these are ALSO not proven...in fact the only thing that they prove is that they DON'T work for Chronic Lyme.

SB1199 doesn't support or negate short term OR long term treatment protocols. SB1199 supports the AMA's mandate of a patient's right to be informed of treatment options, and a doctors right (and responsibility) to provide them.”

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6. DianeWayneCounty PA said... on Jul 8, 2010 at 09:47AM

“Please pass SB1199! I have Lyme and Babesia from a tick bite, and live in Northeastern PA. We need our doctors to be able to treat us here! Not all Lyme infected people are cured in 4 weeks. We need our insurance companies to pay for longer treatments until we are well again. Don't tie our doctors hands and force them to turn their backs on those of us who still suffer. I know of 4 cases of Lyme just this year within 3 miles of my home. I'm in a rural location. How many more are there that we don't know about? How many? We need better education and treatment for all of Pennsylvania....please pass SB 1199.”

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7. Miguel said... on Jul 8, 2010 at 10:34AM

“Nice use of the cover article picture from two summers ago: http://www.philadelphiaweekly.com/news-and-opinion/cover-story/38468994.html

But yeah, Lyme Disease sucks.”

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8. SurvivingLyme said... on Jul 8, 2010 at 10:42AM

“Lyme disease scares the bejezz-us out of the Insurance industry. Imagine if the true numbers of chronic infected were made known , and all that treatment had to be supported.
So there is NO way this legislation will pass, unless the Insurance lobby has magically given up owning the legislature.”

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9. Donna said... on Jul 8, 2010 at 11:19AM

“I don't believe this bill's success is in the hands of the insurance lobby, although I do realize they are very motivated to see it fail and why. BUT the best use of our energy is as VOTERS.... We have to be louder than the opposers. No time to give up now.... Time to call call CALL your senators. Let's help PA to be a shining example instead of a death trap.”

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10. Harvey said... on Jul 8, 2010 at 03:40PM

“Donna is right, only by pressing our legislators time and again can a bill get out of committee. But, there is hope, because this time there was public hearing. We've tried in the past to get a bill into the Health Committee (duh!) but $$ determined the path, again.”

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11. Lisa said... on Jul 8, 2010 at 04:34PM

“Thanks, Tara, for writing, and PW for publishing this important article. Two years ago, I went from excellent health to sudden onset of every symptom under the sun. It took nine months to figure out it was Lyme and I am still in treatment.

Lyme disease is hell on earth - and it shouldn't be that way. If doctors knew what they were looking for and doctors who do know weren't constantly under threat for diagnosing and treating this disease, those afflicted and their families would be saved a lot of suffering.

Keep fighting the good fight...”

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12. BC said... on Jul 8, 2010 at 07:08PM

“Chronic Lyme is real. 80,000 cases? Try more like 800,000. Or even more.....”

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13. SurvivingLyme said... on Jul 9, 2010 at 03:27PM

“Thanks for all the meaningful comments here. It's good to know others are engaged in this fight.

I can't tell you how many so called doctors have rolled their eyes at me when i say i have chronic lyme, which they consistently refer to as "Lyme's disease".
The fact that the majority of doctors here don't even know the correct name is very telling. You wouldn't go to a surgeon who wanted to operate on your "hands-es" or "feets-es".
But here you can be told "lyme's" is treated in 2 weeks of one antibiotic.
So with both Insurance and The Medical Establishment standing in the way, I can only hope there is a slim chance for this legislation.”

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14. NewLymie said... on Jul 10, 2010 at 08:19PM

“I was just told over the phone that I have Lymes. A prescription for 10days of Amoxicillin was sent to the Pharmacy. I am nursing my 11 month old. This is after tellin my doctor I had a tick bite 2 years ago with a rash. I had also told him of many symptoms I was having, all were brushed off until finally I insisted I need to be tested for Lymes. I asked about longer use of antibiotics and was told it wouldn't help, just to wait a while and see how I feel. I asked for a referal which I need with my insurance to an infectious disease specialist and they have already taken weeks without even submitting it to the insurance for approval. Docs would not even address the possible effects on my child that I am still nursing. Time is merely passing by while this infection grows deeper and stronger. The doctors and nurses seem to act as if it's no big deal and I have an infant to care about.”

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15. Bedridden said... on Jul 10, 2010 at 08:32PM

“My wife has been sick with Lyme for 9 years and now she's so sick she has to stay in bed. She can't get treatment because our insurance refuses to pay for it and in this economy we can't afford it. They say people don't die from Lyme but they do and my wife is slowly dying each day.
We had one LLMD in our state and the medical board went after him like they have so many others. He knew fighting would be worthless and he'd just end up spending more than he could afford on his defense for nothing so they won, he retired.
My wife lays in that bed day after day and other people with Lyme on the support boards tell her if she really wanted to get well she'd go to another state to see a LLMD. Money doesn't grow on tress and we can't afford it or by God my wife would have the treatment she needs!!!!!!!!
She lays there praying that things change so others won't suffer like she is and they'll get the help they need. God help us all when we allow this to happen to our own people!”

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16. Family with 5 sick said... on Jul 12, 2010 at 01:12AM

“If you are concerned about Lyme, as a patient, or as a medical professional who knows, as Dr. Ostroff said, that there are clearly long-term issues with Lyme, contact LymeActionPA (www.LymeActionPA.com). Get your name on the email list, get your story in, and get involved. The ONLY way, this bill will pass is if patients, all of us, rise up in great numbers, and that means all of you medical professionals out there that know that this is being mishandled. How many children... how many families... how many employees? LymeAction got this bill to where it is, and now it really is up to all of you. The Department of Health of PA needs to start acting responsibly on behalf of the citizens of PA - protection and prevention, and appropriate access to care are what we need.”

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17. Lynn Chendorain said... on Jul 12, 2010 at 02:03PM

“Please pass Bill #SB1199 to help Lyme Disease Victims in the state of PA.
So many people are down with this dibilitating disease.
Thanks,
Lynn”

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18. Anonymous said... on Jul 12, 2010 at 03:23PM

“My daughter and I have been sick for over 10 years with Lyme Disease. It has caused cognitive problems along with physical agony. Perhaps, when the next generation is on disability, the government will finally sit up and take notice. Greenwich,CT., taught teachers to recognize the symptoms of Lyme Disease to control the outrages cost of educating children with Lyme. With treatment, you have a chance of recovering or at least living.”

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19. Lesley said... on Jul 13, 2010 at 04:35PM

“My sister-in-law has suffered with the symptom's for years now and is suffering today with hip pain. She attempted to work when first diagnosed, but could not daily go to work 40 hrs. a week. Please do what you can for this dibilitating disease. Many people could be helped with more research and new medications!!”

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20. Lisa said... on Jul 15, 2010 at 04:34PM

“12,448,279 ppl live in Pennsylvania. 8,000 confirmed cases. Each year that will increase until we find testing that will be a definate yes...for Lyme disease. People need to know it can be caught by having sex with someone that has Lyme...by blood and everyway..that aids can be transmitted, so can lyme disease. We need to educate not only people with lyme but people without lyme ..how not to get it, thru bodily fluids and push our gov't to find a test that works, so we can get it out of the blood banks. More each year will get it, not only from a tick bite, but a partner. Each year ppl with get healed and catch it again...thru sex. Each year it is ignored and only means more will catch it because of ignorance. We need global testing before everyone has it, if they already dont have some form of it or syndrom caused by it..... It is a very scary brutal disease that needs MAJOR control to stop it...and MAJOR money spent on finding a cure...for all that have it, all those who dont. We the public... need a sure fire vaccine and a sure fire antidote as well as a sure fire test. If not, year after year pple will not be able to work, will get on ss/disability and will....the the ANTI CHRIST ...that infects and criples and kills off the world without help to cure it.”

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21. LYME AWARENESS said... on Jul 15, 2010 at 04:43PM

“Lyme is deadly just like Aids, except some do claim to be cured of it. Hundreds of thousands of people claim to have lyme or fatal diseases linked to Lyme. Like aids it causes other diseases in the body. It also is transmited through sex and blood just like aids, and there does need to be a test to find it, because it has to be in the blood banks infecting many others. You are right Lisa, we need to educate the world about Lyme Disease as well as educate Lyme people how not to pass it onto Family members. We need way more attention on the subject so that people can be cured before the money our government is spending on health care and disability benefits takes this country to its knees. I agree! You get it from a tick, pass it to a partner, and so on down the line. That is why most people with lyme are never cured, not proper measures are being taken to keep that from happening. People with Lyme disease and their partners should be being treated to kill it off in the body.”

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22. not just ticks bite and give you Lyme Disease. said... on Jul 15, 2010 at 04:46PM

“Thats right Lyme awareness. That isnt talked about, it is just what all Lyme has done to the person, how they feel and what all they have tried to do to cure it themself. Not many do get cured but some do, and some die from it. It is crazy how many people choose to ignore all the facts. Lyme is very much like aids.”

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23. Lymie said... on Jul 15, 2010 at 04:51PM

“Yep, that part of the disease is not talked about. I see Lyme Disease people all over Facebook. What is going on? Why are they just talking to each other on Facebook, I think the ones that need educated are the ones that dont know at all about it, not each other. Lyme Disease is a nasty disease. Time to tell see the facts and spread them to those who dont have Lyme so everyone knows how deadly it is. This only touches on what all it causes, with all these comments. The truth is, what doesnt it cause? We need to band together and not only find a cure but tell the world how they can catch it. Ticks bite but so do so many other insects that carry it, that we didnt even know about until lately. Glad this report was made !”

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24. cookie cutter said... on Jul 15, 2010 at 04:59PM

“This is not a cookie cutter disease, but neither was aids. They will find a test and with GOD'S help a cure.”

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25. Tree topper said... on Jul 15, 2010 at 05:03PM

“Anonymous "when the next generation is on disability" What Chronic Lyme Disease symptom person do you know that isnt trying to get on Disability ? Either they already are on Disability or they are trying to get it. The problem there is, if the disease doesn't have a good test to find it, everyone will be using Lyme Disease to get on Disability.”

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26. Bambi L Albert said... on Jul 15, 2010 at 07:38PM

“I had a stroke due to lyme disease, yet the hospital knew so little they kept insisting to my family that the stroke was not due to the lyme, yet they had no answers as to why I had the stroke. Education is needed, before my stroke I walked out on many doctors that knew far less than I did.”

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27. Shannon F said... on Jul 17, 2010 at 08:05PM

“I was sick with lyme for 16 years before I finally got a diagnosis. I spent three years trying different treatments. I finally found the answer at Sierra Integrative Medical Center in Reno, NV, http://sierraintegrative.com. The treatment is primarily homeopathic and they are getting patients well quickly. I was convinced that I would have to be treated with IV antibiotics because of all the research I have done, but I am now a convert to homeopathic medicine because it works. My dad is an MD and all this alternative stuff has been hard for him to swallow. Now he just says, "I can't argue with results." My mom and sister are now at the Reno clinic being treated for lyme and my dad is willingly paying for it.”

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28. Ruth Loucks said... on Jul 18, 2010 at 07:44AM

“As a registered nurse in the state of Pennsylvania I found it unacceptable for what I had to go through to get treatment for Lyme disease in this state. Despite a positive Western Blot test,my physician didn't want to put me on antibiotics, even with a bull's eye rash,my doc still told me "she wasn't impressed" and didn't want to treat me. If a medical professional can't get proper treatment, what are the odds of Joe Citizen getting treated? For those docs who don't believe in chronic Lyme, I challange you to walk a day in my shoes. Patients with acne are treated with long term antibiotics, but you don't see them having a problem getting their medications like Lyme patients do. Guess appearance is more important than being able to function to the insurance industry. PA Lyme patients need help NOW, not later. Thanks to people like Senator Greenleaf for listening to our concerns.”

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29. Camille said... on Jul 18, 2010 at 11:21AM

“After 4 years of Lyme/Bartonella/Babesia treatment I am not 100% well. I can function at a low-to-moderate level but must curtail strenuous activity & rest frequently. My husband retired April 1, 2010; not old enough for Medicare; can't afford COBRA insurance; we applied for a high-deductible plan; BOTH of us denied: me due to Lyme; him due to minor pre-existing issues. We bought a high-deductible guaranteed plan; all pre-existing illness excluded for 12 mos, after which we'll be covered(allowing for sky-high deductibles.) We've discovered the huge cost of meds for Lyme/ Babesia. After comparison shopping by phone, using AAA card, or FreeDrugUS discount card, best prices for 90 days meds run $3500! Try adding that to your budget when you already pay $700/mo for insurance which currently pays nothing out. There's a chance we may fit the guidelines for a pharma co. to provide free brand name meds until exclusionary period expires but we still pay $1750/mo. for generics; A painful year!”

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30. Andre Mondovi said... on Jul 22, 2010 at 01:08PM

“As a former Lyme Disease sufferer, with little hope of ever recovering since antibiotics did NOTHING, and there were no LLMD around, I'm glad to see the truth in media here. Check out the forum on Lyme Disease on Healing Well . com and I highly recommend the Hansa Center for Optimum Health, as that is where many of my Lyme friends have totally recovered from this miserable disease.”

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31. Anonymous said... on Aug 11, 2010 at 01:34PM

“please contact your sentator to vote yes to SB1199

please contact you house rep to vote yes to HB894

both are still up for the September 2010 session!!!!!

http://www.legis.state.pa.us/cfdocs/billinfo/billinfo.cfm?syear=2009&sind=0&body=H&type=B&bn=0894

get everyone you to to call and make this happen! it is only a matter of time they ge infected with this horrible crazy disease!

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32. Anonymous said... on Aug 27, 2010 at 03:09PM

“how about a class action suit against the insurance copanies that won't let Drs. (pay) treat Lymes!!!!!!!!”

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33. Linda Olley, R.N. said... on Nov 26, 2010 at 02:22PM

“Mis-diagnosed for 20 years with a history of well over 100 tick infestations over 22 years, I have suffered from the many manifestations of Lyme, including severe arthritis. The DJD,like a hurricane, required 15 joint related surgeries, (5 total replacements) and news of another TKR. Today, I can barely weight bear. I'm scarely touching on symptoms that have immobilized me. Dizziness, blurred vision, migraine headaches, muscle twitching, depression, tremors, balance problems, nausea, loss of appetite, and innumerable more which I choose not to share!!! I will tell you they are severe. Pain everywhere, even in my eyes.Now- I pose the question why?? I live in America with the right to choose, not be abused. I want to die with dignity, not because of neglect. A violation of our rights for treatment? The Hippocratic oath? Harm has been caused! What if this was you? Your loved ones? SB1199 is mandatory, or suffering and deaths continue. Can your conscience survive the fate you create?”

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