Episode Information

WWL:A Look at Lyme
Where We Live - with John Dankosky
Aired:
07/09/2009
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In this episode:

Exploring the controversy surrounding Lyme disease

 

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49:21 minutes (23.69 MB)
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It sounds simple: a deer tick, a rash, and a chronic syndrome. But Lyme disease isn't just a pathogenic infection—it's a political maelstrom.

First discovered right here in Connecticut, Lyme disease provides a case study in doctor-patient relations and who decides what treatments get prescribed and paid for. As Congress and the President say they'd like to work towards an evidence-based healthcare system, Lyme disease raises big questions about what to do when mainstream scientific evidence about a disease doesn't satisfy the needs of the afflicted. Today, Where We Live, we talk to the producer of a new documentary about the Lyme controversy—and we'll check in with area doctors, patients, and you.

Join the conversation.  Leave your comments below.

Under Our Skin opens at Real Art Ways in Hartford on July 10th and plays through the 15th.  For a full schedule of events related to the film, please visit the Real Art Ways Calendar of Events.  All post-show discussions are free and open to the public.


 
Related Content:

The List of Symptoms Continues To Grow

Oh I think it was a few years after I had the 3 tick bites, on my journey from specialist to specialist -as usual I kept going back to my family doc...and he was poking me, "those points" characteristic of fibromyalgia. "Does it hurt here?" "yes", I said and at every spot where he poked. Finally, 'next poke' I told my doc.."of course it hurts...you're poking me!!!" haha then I poked him, applying the same amount of pressure and asked him if it hurt!! He never poked me again!!!

The symptoms I had early on were so blatant and debilitating...but lacking the "Bull's eye" rash and a positive test...I continued to suffer. Not only that -the onset of symptoms following the 3 tick bits I had, was fast and furious.

That's why I abruptly stopped while in the middle of working on an archaeological excavation in Woodstock (1997)...and went and sat in my professor's truck. I was suddenly ill with a general malise, headache, etc. While sitting in the truck, I felt this incredible itch on my inside, upper thigh. Lifted the bottom of my shorts and found 3 deer ticks, and oozing bites.

By the week's end, I was in the ER...having joint pain in every joint on my left side, my right shoulder and my lower back. I was sent home with Motrin and a referral to an ortheopedic doc. (neg Lyme test)

I struggled to dress myself, could barely walk, etc., and several months (and 2-3 Lyme tests later) went back to my PCP who said ok, he'd put me on 10 days of Doxy and if it's Lyme (or a co-infection) we'll know it is, if it helps. And it did!! By day 6 all the pain (except the left hip) went away!!

I still didn't feel 100%...but was back to being more productive...though still struggling with my concentration and course work. Then I started to get worse again. Sick all the time. REALLY sick with fevers, sinus infections, etc. And the pain in my hip and lower back.

Many tests. Full body scan in 2000 only showed a little bit of arthritis in my sternum. 2 rhemotologists said I didn't have arthritis, all my tests are fine. The next year, a new ortheo and MRI's and I have lumbar spinal stenosis and was told I'd need my left hip replaced by the time I was 50!

Still was getting sick all the time and so dizzy while in Nevada in 2003 I ended up in the ER at St. Mary's hospital. A CAT scan - all my sinuses were infected. By 2004 my endocrinologist ordered a CBC and lots of problems so I was referred to a hemotologist and was told I have IgG4 subclass defiency and low IgG2 and told I was born with this and would need monthly immunogobulin infusions for the rest of my life.

But I was rarely sick as a child (just strep in 4th grade) and as a young adult...and my entire family would be sick with the flu, pnemonia, etc., and I never got it ONCE.

A week after the 1st infusion, I got sick as usual. I could get sick like this - fever, infection, etc., anytime of year but it was worse in the Fall and Spring. This was the Fall. I went back for 3-4 more infusions and the last one, a nurse took blood before the infusion...which had never been done before and I asked why and she said it was to see if I had any signs of renal failure. What??? 1st time I was hearing this!! And the last time I had an infusion!!!

And I stayed mainly well -not getting these infections all the time until last January (my CBC #'s are all in range but some barely). The hemotologist told me that I had probably built up enough immunity, but that it wouldn't last and eventually I would need infusions again. I don't want to but it took 4 rounds of antibiotics between this past Jan-March to get rid of the sinus infection.

Had the total hip replacement in 2006 and the ortheo surgeon was miffed as to why my bones are in such bad condition. All kinds of tests but he never found anything. Told me I could choose which hip I wanted replaced 1st..because my right was just as bad. I did the left since it had been bothering me since I was 35 (after the tick bites). During the surgery, the surgeon found that I had NO cartilidge.

Last Fall I developed IP joint mucus cysts (bilateral) on my thumbs and all the docs thought this to be strange that they were bilateral. Xrays showed an underlying bone issue so I had surgery last January to remove the cysts and have the bones worked on.

And I know, I KNOW I don't need to hear it again from another ortheo that I'm too young for the bone issues and I've been hearing it for almost a decade. When am I going to stop being too young??!! But my surgeon had written a letter to my PCP in Jan., and expressed his concerns about my bones...may be an "inflammatory etiology", and referred to the hip replacement I had at a 'very young age'. My PCP did nothing. Oh he did put me on Lexapro. 5mg...knocked me out!!

I've suspected all along that I've had Lyme...but gave up a long time agi and just let all these diagnosed symptoms build up in hopes that it may become evident someday and I could get some real help.

June -I had a routine hormone profile (saliva test) that confirmed I was postmenopausal...but also showed that I had adrenal dysfunction and chronic low DHEA (lower than someone in the 70-80 year old range). Finally!!! The answer to many of my health issues!!! low DHEA can cause bone loss and immune issues with the adrenal dysfunction. So now I'm taking DHEA supplements to get to middle-age levels and also, vitamin B5 and D supplements. And also bio-identical progesterone...since I had none.

Was telling a friend about the adrenal dysfunction and chronic low DHEA and she asked me what caused this? DUH,..I dunno, hadn't thought about it. She asked me if the Lyme could have...and I told her I doubt that but would google it later (this was 2 weeks ago).

Damn!!!! I found out that it's something called 'Type 2' in Lyme Disease!!! That's it, I went to my PCP and he said he doesn't believe that Lyme Disease even exists, doesn't treat it, etc., but since he prescribes Doxy for acne, said he had no problem giving it to me but not to bother him if I have any issues with it and that if I need more treatment, to go to someone who treats Lyme or an infectious disease doc.

I've been on Doxy for 1 week and my endocrinologist noticed that I had swollen lymph nodes on Monday, and I had a fever which broke yesterday. Am feeling better and noticed my back isn't hurting as much and the recent shoulder pain I had is better.

A couple of years ago...I started getting pain in my right knee and pulled or sprained something pretty badly in March. My right knee started acting up a few weeks ago.

I have yet to come across other Lyme patients who have been diagnosed with the IgG4/IgG2 or adrenal/DHEA issues and Lyme arthritis...though I've now read about it on the internet. How many have been tested for all these things? Probably not very many!! Or if they don't have these things and others like me do...why is that?

Well I'm just waiting to see what will happen to me once I'm done with the 28 days of Doxy! I hope you're right, Dr. Shapiro!!!

 

 

An ART and a SCIENCE

It is frustrating to hear a doctor say with absolute certainty that this disease is  "well understood"  with plenty of studies that show it isn't chronic and that the tests are accurate... 

I waited 4 years suffering in disabling pain with 3 negative lyme tests.Finally,  when my blood was sent to different lab (Stonybrook, NY)--it came back CDC positive for an active infection IgM.  Antibiotics saved my life.  How can doctors let people fall through the cracks like this?

Left untreated, Borrelia burgdorferi is a pleomorphic organism that can change forms and create a biofilm to protect itself-- forming colonies deep insider privileged areas of the body causing symptoms to wax and wane.

University of New Haven has a pioneering researcher who is studying Lyme disease and biofilms.  I organized an art fundraiser in Stony Creek CT this Sunday to support her research and try to move the focus away from controversy towards the science.  Come hear her speak....

http://www.nhregister.com/articles/2009/07/09/life/0709_paint-a-thon.txt

We have to go back before managed care--to a time when medicine was both an art and a science---let's agree that more research needs to be done.

Kimberly Ruggiero

 

Lyme Disease

I was infected in 1976, and recall the rash, headaches, blinding lights and painful joints.  My dad, a doctor, had nom clue, but gave me antibiotics for years for acne.  Last year, extreme stress brought on a serious relapse.  I have many positive elisas and western blots, and I have been almost bedridden for a year.  Yale has diagnosed me with multiple sclerosis, and IGIV is wonderful. However a New England Med Ctr Dr recommends 1 to 2 ys of IV antibiotics.....but I can not find a dr.  I have insurance, and a supportive network to assist with home IV.  Any help with names would be great;  so far, the LLMDs I have called have no openings.  My brain lesions are stable, and several md's have called them typical of lyme, not ms.  In the meantime, I am using tumeric, garlic and cat's claw to control the Lyme with the IGIV.  I really need antivbiotics, so please send suggestions.  Thanks!~

UNDER OUR SKIN

I was initially diagnosed with Lyme disease when it first appeared in CT in the mid-1970's from the small "bullet-type" rash on my wrist, and although the physician treating me at the time determined that any blood work might produce a "false negative" because the disease had not progressed enough to produce antibodies, she nevertheless treated me with a course (as I recall) of approximately two weeks of antibiotics. 

Approximately seven years ago, I contracted Lyme again, this time with a large, significant rash resembling a bad second degree or third degree burn, behind my knee.  Again, I was treated with a course of several weeks of antibiotics.  At the mid-point during this thirty-year span, due to fatigue, and pain at various trigger points in my body, I received a diagnosis of Fibromyalgia.  Although I continued to work full time during most of these years, I too, experienced sporadic episodes of pain, fatigue, and the familiar "brain fog" described by so many people with these diagnoses.  

 

Email from Nancy @ Lyme Support

You moderated a very important and sensitive topic today, and did it ever so professionally.

I was on hold to make a statement on the air, but there wasn't enough time. I was advised I could send in an email, so I am attaching a 5 page opinion paper that I wrote after the show. I am not a professional writer, but as possible and given the shortness of time, I included some referencesI had available.

There is so much suppression of information regarding Lyme disease (and autoimmune diseases that are often an endpoint of this immune-system destroying illness,) but this is only the tip of the iceberg. Lyme disease is the part that touched my life and that of my family. But I'm aware that this happens with other diseases, and with whole industries competing against each other.

I hope you will consider having a "Part II" to this topic and can get Dr. Raxlen back again since time was short for him to speak. It is so hard to get the two sides to this dilemma to have a civil debate together.

I do not currently work as an RN; I am employed as a personal support for a developmentally challenged client. I have been involved in Lyme support as a volunteer since the late 1990s and have a website, http://lymesupport.net.

My website, primarily about Lyme disease basics and advocacy, has fallen under the scrutiny of people like Dr. Shapiro who blame the internet for Lyme mis-information. I've personally been "attacked" on sci.med.diseases.lyme  for my stance on Lyme disease and withdrew from participating there as I found it more rewarding to provide personal support and counsel than to be publicly mocked and flamed on a newsgroup that was never intended for that purpose.

Thanks again for taking this difficult issue to the radio airways. I hope and pray that the distractions crumble and the truth becomes undeniable regarding chronic Lyme infection.

Email from listener Robin A. Henrie, M.A.

I listened with great interest to your show this morning on Chronic Lyme Disease, and I would like to share my family's experiences with it.  I was diagnosed with Lyme Disease the summer of 1989.  I had a severe "migraine" and extremely severe fatigue, along with a classic "bulls-eye" rash.  I was treated with three weeks of tetracycline, which cured the headache.  The fatigue gradually improved over the next six months or so.  I then proceeded to develop a variety of seemingly unrelated health problems including fibromyalgia, GERD, swollen glands, greatly increased allergies, Meniere's Disease, frequent sore throat, and others.  The one common, underlying theme for all these problems was inflammation, although I did not know that at the time.  I had started attending a support group because my son had been diagnosed with Lyme Disease and three co-infections (more on him later).  After attending the meetings for a year, there was a speaker who was talking about all the symptoms that Lyme Disease can cause, and that it causes widespread inflammation.  A recent Cardio CRP test had shown that I had very high inflammation, and hearing this speaker made me think, "No, this couldn't all be Lyme Disease, could it?"  A very positive Western Blot (IgM), as well as a positive PCR, showed that it was, in fact, Lyme Disease.  The 21 days of antibiotics had not, apparently, cured me.  That was in June 2004.  I took oral antibiotics for a year and a half.  Since then I have worked with a naturopath for nutritional and life-style changes to help my immune system.  I am the healthiest and strongest that I have been in twenty years!  I AM PROOF POSITIVE THAT 21 DAYS OF ANTIBIOTICS DOES NOT ALWAYS CURE LYME DISEASE, BUT THAT LONGER COURSES, AS NEEDED, MAY IMPROVE IT TO A LEVEL WHERE IT IS NOT A PROBLEM!!!!  Am I "cured?"  I honestly don't know.  I have read research to show that the spirochetes may be hiding out in the intracellular spaces in my tissues waiting for my immune system to become compromised in some way.  Just to be safe, I live a lifestyle that supports a healthy immune system, including diet, exercise, and, as much as possible, enough sleep.
 
Now for my son's story.  He began college in the fall of 2000.  Luckily, he was attending a local college and living at home.  He seemed fine that fall, but he felt sicker and sicker throughout spring semester of 2001.  He had many of the same symptoms that had plagued him in late middle school, for which we had never found a cause.  In middle school, school officials had thought it was school avoidance, and they  even put him on a "medical plan," where we had to go to the doctor every time he was out sick.  The doctors always verified that he was truly ill, but none were able to find a cause.  By fall semester 2001, he was sick enough that he was not able to complete all of his classes.  He attempted to take classes in the spring of 2002, but he was unable to continue any of them.  He had weighed 185 pounds, bench-pressing 200 pounds, and he now weighed 120 pounds, and was unable lift his toothbrush or to roll over in bed without help.  We saw many doctors, none of whom was able to tell us what was wrong.  He was sleeping 19 hours a day, his body would twitch uncontrollably and wake him out of a sound sleep, he couldn't read because his eyes would jump all over the page, his short-term memory was essentially gone, his speech was slurred, he was in constant, unremitting pain, and the list of symptoms goes on.  "WE WERE TOLD THAT IT WAS ALL IN HIS HEAD, THAT IT WAS ALL DEPRESSION!"   Our orthopedist, however, said that it was NOT depression.  He admitted that he had no idea what it was, but he told us to keep going to doctors until we found out what was causing the problems.  My son switched to a new primary care doctor, who said he would keep testing until he found out what was causing his symptoms.  One of the tests showed that my son was highly positive for Babesiosis, a tick-borne disease that is carried by the same kind of tick that carries Lyme Disease.  We then went to an infectious diseases specialist in Hartford, who did more tests.  Those showed that my son also had Ehrlichiosis, which is carried by the same kind of tick.  He treated my son with a course of medication for the Babesiosis and a course of medication for the Ehrlichiosis.  My son was still extremely ill.  I had done a lot of research on reputable websites (Medline, Pub Med, the CDC, and the like), and all that I read pointed to my son's having Lyme Disease.  Despite all the symptoms of Lyme that my son had, the doctor insisted that he could not have Lyme Disease because his Elisa blood test was negative, but, rather, that he had post-Lyme Syndrome.  To this day we have not figured out how he could have post-Lyme Syndrome if he supposedly had never had Lyme Disease.  He also said that if my son HAD had Lyme Disease, that the course of treatment for the Ehrlichia would have cured it.  At that point I went to a lecture by two specialists in tick-borne illnesses, which was sponsored by the Greater Hartford Lyme Disease Support and Action Group.  The doctors' talks described my son exactly!  We went to one of the doctors the following week, and, although my son tested negative by Western Blot, he did test positive by PCR for Lyme Disease.  That doctor sent us to an immunologist, who found that the Lyme Disease had decimated my son's immune system.  He found this by giving him a pneumonia vaccine, waiting for several weeks, and then testing him for antibodies.  My son was not even making antibodies to the pneumonia vaccine!  No wonder he had had negative antibody tests for the Lyme Disease.  We finally got the diagnosis of Lyme Disease in April of 2003.  With 20-20 hindsight, my son had probably initially contracted it in 7th grade, when he suddenly developed migraines and ADHD.  It took us from 7th grade until what should have been his junior year of college to get him diagnosed!!!
 
The tick-borne diseases specialist treated him with a combination of antibiotic and antimalarial medications to treat the Lyme Disease and the Babesiosis.  Along the way, he was also diagnosed with Mycoplasma Fermentans.  No wonder he had been so ill!  My son improved greatly, although he was still clearly ill.  The doctor referred us to another specialist, who knew of some additional protocols for the Babesiosis.  My son has been seeing the other doctor ever since then.  He has gone through periods of being on and off the various protocols, most of which have included some periods of antibiotic treatment.  He went from being unable to roll over without help, to walking with a cane and, eventually, to walking without a cane.  His short-term memory began to improve, and in February 2007 he discovered that he could read again!  In the fall of 2007 he began taking college courses again, one course at a time.  This past semester he was able to take two courses!  He is also now able to go for short walks for exercise.  He has a long haul ahead of him, but he has made remarkable progress.  As gravely ill as my son was, it is likely that he would have died if we had followed the advice of the infectious diseases specialist.  Instead, he is improving steadily, and he is on the path to living a reasonably normal life and being a productive member of society.  THIS WOULD NOT HAVE BEEN POSSIBLE WITHOUT LONG-TERM ANTIBIOTIC TREATMENT!!!!!
 
Listening to Dr. Shapiro on your program this morning made me feel sick to my stomach.  Yes, antibiotics are clearly overused, in general.  But in the case of chronic Lyme Disease, as well as in Babesiosis, long-term antibiotic treatment is very necessary for some patients.  Teenagers are given long-term antibiotics for acne, and no one questions it, so why should it be questioned for chronic Lyme Disease?  There have been many articles published describing research that proves this!  I truly don't understand why Dr. Shapiro and the IDSA are choosing to ignore this research, not to mention the experiences of the patients and the doctors who are treating them on a regular basis.
 
I greatly appreciate your airing this program and bringing this issue into the "lymelight."  I was very disappointed that you did not give more time to Dr. Raxlen, who has a wealth of knowledge and experience about chronic Lyme Disease and the other tick-borne illnesses.  The program would have been much more balanced if you had given him the same amount of time that you gave Dr. Shapiro.
 
Thank you for airing this program and for providing a forum in which people can voice their experiences and opinions on this issue.
 
Yours truly,

Robin A. Henrie, M.A. 

Conclusion: Two Schools of Thought

Undeniably, there are two “schools of thought” regarding diagnosis and treatment of Lyme disease. Both claim to be performing differential diagnosis and base their decisions on evidence-based science. Many “conservatives” who strongly influence published literature and the IDSA guidelines about Lyme disease are rooted in conflicts of interest. They tout that it is easy to diagnose and treat, and insult other doctors as poorly trained in this. Many a patient who has sought treatment from these experts have been diverted to other specialists for treatment of mental illness, auto-immune diseases, and other diseases, even though they have had conclusive or clinical signs of the infection. These doctors claim that they are abiding by evidence-based medicine regarding Lyme disease, even if that means ignoring positive blood test results, rashes or history indicative of probable Lyme infection.

The other “school” of Lyme experts who favor aggressive treatment with antibiotics, has a body of evidence in support of their methods of diagnosis and treatment from world-wide sources, including research done by the more conservative experts. The numbers of those helped by these doctors seems to far outweigh those with chronic symptoms that are not treated with antibiotics.

My hope is that the problems between these two groups will some day soon be reconciled in a manner that the patient’s well-being takes precedence and freedom of choice is not restricted by guidelines designed under the influence of insurance and pharmaceutical companies or other industries.

The petty arguments about risk vs. benefit are an unnecessary distraction that is hindering acceptance and publication of findings by aggressive-treating doctors. Failure to treat, or to treat adequately is costing our society in many, many ways.

Something needs to be done to put an end to conflicts of interest and their influence on health care decisions so that doctors can be free to treat under the license they have earned, following the Hippocratic oath of “due no harm.”  For those with a difficult infection, the benefits of antibiotics time and again has outweighed the risks. I desperately hope that future generations will not be crippled by the ideologies currently held and promoted by IDSA that are holding so many of us imprisoned by our own infected bodies.

References:

http://content.nejm.org/cgi/content/full/357/14/1422 New England Journal of Medicine: Volume 357:1422-1430, October 4, 2007 Number 14, “A Critical Appraisal of "Chronic Lyme Disease”

http://www.journals.uchicago.edu/doi/pdf/10.1086/508667 (IDSA Guidelines)

http://ilads.org/ International Lyme and Associated Diseases Society

http://www.courant.com/news/opinion/editorials/hc-zemel-lyme-disease.artjun19,0,5257058.story  Opinion posted by Dr. Lawrence Zemel at the Hartford Courant website

 

Easy to diagnose, easy to treat?







Easy to diagnose, easy to treat?

This is only sometimes true. In accordance with current CDC guidelines, if a patient presents with a bulls eye rash and/or passes the hurdle of having a positive Elisa test and then and only then has the Western blot test and is found positive for that test, he/she is considered infected. Although a clinical diagnosis can be made based on patient history and presenting symptoms, most doctors do not take the time to evaluate the patient history and simply rely on the tell-tale rash or blood work to diagnose Lyme disease.

The problem is that over 50% of people infected do not get the bulls eye rash, and likewise, many truly infected have negative blood test results due to limitations of the tests and ability of the bacteria to conceal itself within cysts and cells, leading to a poor immune response. Additionally, bands once used to determine Lyme infection with the Western blot test were eliminated from diagnostic criteria after release of the Lymrix vaccine which activated the same bands in that test.

Additionally, Lyme disease has been stereotyped as the “arthritic knee” disease. The current diagnostic tests seem to pick up on patients with joint symptoms, but once the disease starts attacking the brain and other body systems, the antigenic markers that these tests detect seem to disappear due to the sero-negative nature of advanced infection.

In general, these concepts about Lyme disease have been addressed time and again by lecturers from ILADS, and they have presented “mountains” of science-based evidence by way of current and past research to back up their findings. IDSA on the other hand has selectively suppressed that evidence in favor of a more conservative/restrictive approach to diagnosis and treatment of chronic or advanced stages of Lyme disease.

Oddly, in spite of the similarities of stages of Lyme disease and another spirochetal infection, Syphilis, the denial persists.

My own conclusion is that this persistent restrictive stance about Lyme disease is tied to other financial endeavors of many of the doctors involved in devising and promoting the IDSA guidelines for Lyme disease. Apparently, one doctor has a patent on the bacteria; this is something I don’t quite understand, but supposedly that would give him rights to creating a vaccine (and therefore, power to prevent others from developing a vaccine.)

I do not believe that this stance is unique to Lyme disease. I believe this is occurring with many other health issues that can influence sales of foods, drugs, products and insurance coverage from diabetes to aids to heart disease, mad cow disease and many of the so-called syndromes and auto-immune diseases.

For instance, years ago, a professor at my university brought to light that the diet for diabetics was designed by a manufacturer of insulin treatments. The diet has just enough carbohydrates in it to necessitate use of insulin daily. Whereas a diet lower in carbohydrates would eliminate the need for insulin injections.

Another example: Exposure of the potential effects of high fructose corn syrup (HFCS) on insulin response is being suppressed by the associated industry as it struggles to keep their product on the market, evidenced by the ridiculous and condescending ads promoting foods containing HFCS.

I am very frustrated that overall, doctors are discouraged from doing their own research or conveying their findings to their peers. Apparently, ILADS doctors who have attending conferences with IDSA doctors have been barred from speaking. Without fair exchange of ideas, we can not break from this restrictive atmosphere of health care.

Regarding the patients, those with determination will seek treatment to get break free from imprisonment in their own bodies. Some will even travel to countries with less restrictions on health care for any sign of hope, even trying deadly treatments out of desperation such as fever treatment that was offered in Italy.

Few of the chronically ill wish to remain so sick. Most would prefer health and ability to resume their jobs and activities as before their disease seriously “took root.”  There are many individuals who are bedridden, young and old. They would choose otherwise but must depend on others to get the healthcare they need. There are too few doctors willing to treat this infection aggressively.

 

Risk vs. Benefit (Antibiotic use)







Risk VS Benefit: the Argument against long term antibiotic treatment

This argument is long worn-out and overused. Under most circumstances it seems that those following IDSA’s guidelines are actually referring to the dangers of long term intravenous antibiotics, but they simplify what they say to cover orals as well. In my research of medical documents on the internet, the only case of death due to long term use refers to a patient who had a long term catheter in which a systemic fungal infection began at the insertion site of the catheter. This one case (which I saw referenced in regard to a post by Dr. Zemul to the Hartford Courant website or in a reply to it) should not be used to argue against a majority of cases where this has not occurred. That is not evidence-based medicine.

The fact of the matter is that thousands upon thousands of patients have been or are currently being treated with long term antibiotics (oral and/or intravenous) without serious consequence. This includes those with syphilis, tuberculosis, acne, chronic urinary tract infections, and far more than just Lyme disease.

Regarding indiscretionary use of antibiotics for colds and other viruses or simple acne, this should not be applied in the case where someone has a debilitating bacterial infection that is responsive to antibiotic therapy, be it IV, oral, IM or any combination, whose condition is monitored by the prescribing health practioner.

To imply that Lyme disease antibiotic treatment, rather than Lyme disease itself is the bigger risk is ridiculous. Countless people have been bedridden, blinded, paralyzed, disabled, riddled with debilitating anxiety and depression, overwhelming fatigue, immobilized, and cognitively impaired due to inadequate eradication of systemic Lyme bacteria. Many have developed auto-immune disorders as Lyme disease has destroyed them inside out. Many have died from this menacing infection directly or indirectly, including the unborn. Many are imprisoned in their own bodies.

On the bright side, a vast number of people have recovered fully after early, adequate antibiotic treatment of Lyme disease. Others who start treatment later have overcome many of these debilitating and crippling symptoms when provided long-term antibiotics and other therapies to restore their health and mobility.

This has been true for several family members and friends and myself. Some have apparently responded well to alternative medicine including homeopathy, naturopathy and hyperbaric treatments. Without treatment, permanent damage and death can occur. We all had the benefit of finding a health practioner performing a differential diagnosis, concluded we had Lyme disease and in some cases, co-infections that all responded well to treatment.

 

Conflicts of Interest




Thank-you for hosting a program on this important issue. I hope you can continue the discussion and get Dr. Raxlen back for some more air-time. I am a frequent listener and supporter of WNPR.



 

A fairly recent opinion article on Lyme disease for “Current Concepts” section of New England Journal of Medicine, “A Critical Appraisal of “Chronic Lyme Disease” (Oct. 4, 2007) which can be found at http://content.nejm.org/cgi/reprint/357/14/1422.pdf, refutes the notion that chronic Lyme infection is common, providing suggestions for how a practitioner can respectfully allay a patient’s fears and insistence that he/she has Lyme disease.

 

Pay close attention to the authors at the top:

Henry M. Feder, Jr., M.D., Barbara J.B. Johnson, Ph.D., Susan O’Connell, M.D.,

Eugene D. Shapiro, M.D., Allen C. Steere, M.D., Gary P. Wormser, M.D.,

and the Ad Hoc International Lyme Disease Group*

Following the article, at the top of page 1429, we read,

Dr. Feder reports receiving lecture fees from Merck and serving

as an expert witness in medical-malpractice cases related to Lyme

disease. Dr. Johnson reports holding patents on diagnostic antigens

for Lyme disease. Dr. O’Connell reports serving as an expert

witness related to Lyme disease issues in civil and criminal cases

in England. *Dr. Shapiro* reports serving as an expert witness in

medical-malpractice cases related to Lyme disease, reviewing

claims of disability related to Lyme disease for Metropolitan Life

Insurance Company, and receiving speaker’s fees from Merck and

Sanofi-Aventis. *Dr. Steere* reports receiving a research grant from

Viramed and fees from Novartis. *Dr. Wormser* reports receiving

research grants related to Lyme disease from Immunetics, Bio-

Rad, and Biopeptides and education grants from Merck and AstraZeneca

to New York Medical College for visiting lecturers for infectious-

disease grand rounds, being part owner of Diaspex (a

company that is now inactive with no products or services), owning

equity in Abbott, serving as an expert witness in a medical malpractice

case, and being retained in other medical-malpractice

cases involving Lyme disease. He may become a consultant to

Biopeptides. …

 

Should it be any surprise that the authors’ stance on chronic Lyme disease serves their interests more than that of people suffering chronic bacterial Lyme infection?

Now, take note all of the authors’ possible conflicts of interest. These practitioners financially benefit from the stance that chronic Lyme infection is a myth.

Ad Hoc participants are identified in the appendix on page 1429:

 

The following members of the Ad Hoc International Lyme Disease Group were also authors: Gundersen Lutheran Medical Foundation, La Crosse, WI — W.A. Agger; National Microbiology Laboratory, Health Canada, Winnipeg, MB, Canada — H. Artsob; Johns Hopkins Medical Institutions, Baltimore — P. Auwaerter, J.S. Dumler; St. Luke’s Hospital, Duluth, MN — J.S. Bakken; Yale University School of Medicine, New Haven, CT— L.K. Bockenstedt, J. Green; New York Medical College, Valhalla — R.J. Dattwyler, J. Munoz, R.B. Nadelman, I. Schwartz; Danbury Hospital, Danbury, CT — T. Draper; Johns Hopkins Medical Institutions, Crofton, MD — E. McSweegan; Atlantic Neuroscience Institute, Summit, NJ, and the NewYork University School of Medicine, New York — J.J. Halperin; Boston University School of Medicine and Boston Medical Center, Boston — M.S. Klempner; University of Connecticut School of Medicine and Connecticut Children’s Medical Center, Farmington — P.J. Krause; Centers for Disease Control and Prevention, Fort Collins, CO — P. Mead; University of British Columbia, Vancouver, Canada — M. Morshed; University of Medicine and Dentistry of New Jersey–Robert Wood Johnson Medical School, Piscataway — R. Porwancher; University of Connecticut Health Center, Farmington — J.D. Radolf; Maine Medical Center, Portland, ME — R.P. Smith, Jr.; Schneider Children’s Hospital at North Shore, Manhasset, NY — S. Sood; Washington Hospital Center and Georgetown University Medical Center, Washington, DC — A. Weinstein; Wadsworth Center, New York State Department of Health, Albany — S.J. Wong; and Connecticut Children’s Medical Center, University of Connecticut, Hartford — L. Zemel.

(Note; Dr. Larry Zemel recently spoke publicly at the Hartford Courant website against the new Connecticut bill granting doctors to treat Lyme disease as they see fit.)

Now, compare it to the list of doctors/researchers who have designed the IDSA’s treatment guidelines. Dr. Gary Wormser is stated as the lead author (see http://www.idsociety.org/Content.aspx?id=3744). Eugene Shapiro is a contributing author. Here is the list:

*Gary P. Wormser*,1 Raymond J. Dattwyler,2 *Eugene D. Shapiro,*5,6 John J. Halperin,3,4 *Allen C. Steere*,9 Mark S. Klempner,10 Peter J. Krause,8 Johan S. Bakken,11 Franc Strle,13 Gerold Stanek,14 Linda Bockenstedt,7 Durland Fish,6 J. Stephen Dumler,12 and Robert B. Nadelman1

So, we see, there are three major contributors to this article who are also key in designing IDSA’s 2006 treatment guidelines for Lyme disease (highlighted with *.)

Absent from any of these lists are health care providers who are also members of ILADS:

International Lyme And Associated Diseases Society. These doctors base their diagnostic and treatment guidelines on evidence-based science but their sources are rejected by  the current panel at IDSA. Oddly, some of these scientific resources regarding chronic Lyme infection cited by ILADS lecturers were actually authored by members of IDSA!

I believe that the key to this dilemma over how to diagnose and treat Lyme disease is tied to conflicts of interest far beyond what I’ve demonstrated here. (So does our CT Attorney General, Richard Blumenthal.)

 References:







http://content.nejm.org/cgi/content/full/357/14/1422 New England Journal of Medicine: Volume 357:1422-1430, October 4, 2007 Number 14, “A Critical Appraisal of "Chronic Lyme Disease”

http://www.journals.uchicago.edu/doi/pdf/10.1086/508667 (IDSA Guidelines)

http://ilads.org/ International Lyme and Associated Diseases Society

http://www.courant.com/news/opinion/editorials/hc-zemel-lyme-disease.artjun19,0,5257058.story  Opinion posted by Dr. Lawrence Zemel at the Hartford Courant website

 

Listener email from Sarah

I was the fourth diagnosis victim of Lyme Disease.  I'm from Old Lyme and was diagnosed with "Lyme Arthritis" in 1976 when I was 4 years old.  At the time they didn't know it was caused by a spirochete, and was treated with baby aspirin instead of antibiotics.  I am now 37 and have severe musculoskeletal pain & neuropathy.  At 20, i was diagnosed with "fibromyalgia," but am fairly certain that my pain is due to Lyme.  You're running out of time, so i'll cut this short & send it off...

Listener email from Elise

I am an avid NPR listener and supporter - but I was extremely disappointed in your reporting/managing of Where We Live and the Lyme Disease conversation this morning. I am the mother who had the multiple miscarriages from Lyme disease and the fact that you allowed one doctor to speak for such a long time spouting total misinformation about the scientific studies made my stomach turn. It brought all the sadness and anger that occurred when I was told by the OB that my baby was dead at 18 weeks (into the pregnancy) from the LYME BACTERIA!! I have 50 peer review studies/scientific papers in front of me that document the persistence of the infection. The IDSA doctors will not allow those studies to be a part of their decision making about Lyme guidelines because they are "paid off" - bottom line.

There is documented proof that 9 out of 13 of those IDSA doctors have conflicts of interest and that is why AG Blumenthal investigated them!

With such poor coverage this morning - NPR became a party to the gross misinformation that is being spread by the doctors that are paid to say what the insurance companies want them to say. Perhaps if you had Lyme disease yourself or you had to bury a baby 5 months into a pregnancy and then have another memorial for the next miscarriage from Lyme, you would have been more balanced in YOUR reporting.

Listener email from Chris

I'd like to give a brief but personal account of my battle with Lyme disease.  It took 9 different doctors and 9 different diagnoses over a 6 month period of aguish before I was properly diagnosed.  During my 8 years of antibiotic treatment I never tested positive, yet upon finally getting better seroconvert to positive for Lyme disease.  I was debilitated/disabled for a very long time, and still suffer from from after effects.  Dr. Shapiro's assessment of the disease being easily treated is clearly wrong. 
 
Also, peer review journal articles that Randy Sykes referred to, showing that Lyme disease is persistent and refractory, are human models not animal models as Dr. Shapiro incorrectly stated. 
 
It's time to come clean with the truth about Lyme disease. 
 
Chris Montes

A tribute to human Lyme hosts and their caregivers...

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The Way of Truth: a tribute to those afflicted with chronic bacterial Lyme disease and co-infections, and those helping us annihilate it…
1 If I speak in the tongues of men and of angels, but hide scientific truth about Lyme disease, I am a noisy gong or a clanging cymbal. 2 And if I have prophetic powers, and understand all mysteries and all knowledge, and if I have all faith, so as to remove mountains, but suppress scientific truth, I am nothing. 3 If I give away all I have, and if I deliver up my body to be burned, [1] but conceal scientific truth, I am nothing.
4 Our scientifically sound Lyme health care providers and researchers are patient and kind; they need not envy or boast; or be arrogant 5 or rude. They need not insist on their own way; or be irritable or resentful; [2] 6 they do not rejoice at wrongdoing, but rejoice with the truth. 7 Each of them, our families and us inflicted with Lyme disease bears all things, believes all things, hopes all things, endures all things.
8 Scientific truth never ends. As for popularized but short-sited theories and protocols (the so-called IDSA Guidelines), they will pass away; as for falty tests, they will cease; as for misdiagnosis and inadequate treatment, they will pass away. 9 For we know in part and we treat in part, 10 but when the truth presides, the untruth will pass away. 11 When I was a child, I spoke like a child, I thought like a child, I reasoned like a child. When I became a man, I gave up childish ways and realized not all “science” is truth. 12 For now many see borellia dimly, but soon, it will be clear. Now some know in part; soon they shall know fully, even as I … know.
13 So now regarding Lyme disease, faith, hope, and truth applied to diagnosis and treatment abide, these three; but the greatest of these is truth.
(adapted from 1 Corinthians 13; bolded words represent changes to the original text.)
 
 
 

Clinical diagnosis

It seemed that Dr. Shapiro dismissed many doctor's clinical observations. Some patients do not respond to antibiotics. There can be many reasons for this. However, it is obvious that many patients do respond to long term antibiotics and that it is not due to the placebo effect. Patients who are very ill.... are allowed to have antibiotics and they improve. Then they are taken off of antibiotics and their lyme symptoms return either almost immediately or a few months down the road. The lyme literate doctor will notice this correlation, put the patient back on antibiotics and the patient improves again. It is criminal to withold treatment from someone with a chronic degenerative disease....especially when the treatment is working.

Dr, Shapiro does not have the advantage of seeing patients treated with long term antibiotics because he doesn't prescribe long term antibiotics. Because he doesn't treat long term, he does not have the clinical experience to be able to make such absolute statements that there is no such thing as chronic lyme and that antibiotics do not improve the condition of many patients. It does have to be realized that everyone is an individual and may be infected with different combinations of microbes.Because testing is so inaccurate and there are many different strains of borrelia that are NOT tested for(over 300 strains)....doctors do have to use their clinical judgement, try different combinations of antibiotics and antimalarials (for babesia coinfections)...and observe how the patient responds.

personal experience with Lyme Disease

I went through a harrowing personal experience with Lyme Disease. My mother was diagnosed with it based on the characteristic rash and blood test. After being treated with a brief course of antibiotic therapy, a multitude of severe symptoms persisted. Doctors were resistant to pursuing further antibiotic therapy and I, a full-time college student, took on the task of understanding this disease. I read two books on the subject and finally found a physician who strayed away from the principles of the Infectious Disease Society of America and provided my mother with more doses of a drug called doxycycline which is used to treat children with ACNE. After finally getting to this point, my mother returned to normal.

Testing for Lyme

The real problem with the testing is convincing a doctor that you have the disease when you have been infected before. We live in an area where bites are not a one-time event. My wife has been bitten and become symptomatic 5 separate times. The first time or two, the "classic bullseye" was enough to convince the physician that she was infected. On later occasions, after being bitten, she had early symptoms, but the physician would not test her because they knew that she would test positive. At the same time, the physician would not prescribe treatment until she worsened to the point that the diagnosis was more clear. It's a catch 22 that makes treatment difficult and allows unnecessary progression and pain.

Lyme Disease

I just heard Dr. Shapiro say that a rash always appears in cases of Lyme Disease infection.. I respectfully disagree.  My personal experience is that no rash appeared.. several august internists told me to "get used to" arthritis pain and pain killers.  Since there was no history of severe arthritis in my family, I eventually went to a muscular-skeletal physician, who recommended a rheumatologist.  This rheumatologist tested for dysentery, giardia, amoebas and lyme disease.  Bingo.. the pain was due to Lyme and I was on Doxycycline for 2.5 years.. All my large joints were affected and I great trouble getting dressed, walking up/down stairs, standing up after sitting, etc.etc.  I feel that Dr. Shapiro was very cavalier when dismissing the characteristica of the disease.  When I did some library research I discovered that the rash appears only in approx. 60% of cases.  It was like getting out of prison when I was finally free of the pain..