Diagnosing and Treating Lyme Disease
http://thedianerehmshow.org/shows/2012-02-29/diagnosing-and-treating-lyme-disease
The CDC estimates there are about 30.000 cases of Lyme disease in the U.S. These figures don’t include many who believe they have Lyme disease even though signs of infection don’t show up on lab tests. In addition, among many with evidence of exposure, there’s no proof that the bacteria associated with Lyme disease is actually the cause of their health problems - especially when these problems have been long term. Among doctors debate has been vicious. Some say chronic Lyme is real and is major health issue. Others argue these claims are not supported by the research. Careers have been ruined. Contradictory and misinformation is everywhere, and patients, many with truly debilitating conditions, are left in the lurch. Join us to talk about challenges in diagnosing and treating Lyme disease.
Guests
Dr Paul Auwaerter
associate professor of medicine, Johns Hopkins University School of Medicine
and clinical director, division of infectious diseases.
Johns Hopkins Hospital
Dr. Samuel Shor
internist, private practice and associate clinical professor at George Washington University.
Dr. Brian Fallon
professor of clinical psychiatry.
director, Lyme and Tick-Borne Diseases Research Center. and
director, Center for the Study of Neuroinflammatory Disorders & Biobehavioral Medicine
Columbia University
Stephen Barthold
professor,department of pathology, microbiology and immunology
Center of Comparative Medicine at the School of Veterinary Medicine, University of California, Davis
Program Highlights
Questions as to whether chronic Lyme disease exists, how to test for it, and how to treat it are dividing doctors and confounding patients. Diane's guests discuss why diagnosing and treating the disease remains so challenging and controversial.
Best Treatment Practices
Doses of specific antibiotics are recommended for both early-stage Lyme disease and for patients who may be experiencing some neurological problems or arthritis, like knee swelling, Dr. Auwaerter said. But as for the question about whether or not it's possible to have so-called "chronic" Lyme disease, Auwaerter said that carefully performed studies have shown no evidence that bacteria seems to persist in people with ongoing complaints after being treated for Lyme disease.
A Different View On Chronic Lyme Disease
Dr. Shor believes that there's "no scientific basis" for concluding that 30 days of treatment in all patients with Lyme disease is going to be adequate to cure the disease. Dr. Barthold has found in his veterinary practice and research that the bacteria that causes Lyme disease is very
good at persisting in an animal's body for that animal's entire lifespan. It's possible, Dr. Barthold said, that this could be the same pattern for the disease in humans.
What Happens With "Chronic" Lyme Disease?
"The infection is persistent, the disease is not," Dr. Barthold said. "And what's curious about Lyme disease is in the early phase of the infection you have arthritis and inflammation of the heart and other manifestations in animals as you see in humans. And then the immune response, particularly antibody, comes in and clears a large number of the bacteria from tissues leaving behind persisting organisms that are sequestered away in connective tissue," he said.
Difficulties In Diagnosis And Treatment
Dr. Fallon said that it's certainly possible for some patients to have Lyme disease but to not test positive for it. Dr. Shor agrees that the available testing is "insensitive." "And we have managed care which pushes physicians to see very complex patients in short periods of time and insurance companies that are loathe to pay any more than they have to," Dr. Shor said.
You can read the full transcript here.
Comments
Please familiarize yourself with our Code of Conduct and Terms of Use before posting your comments.
As a physician and advocate for my patients I am very torn by this issue, and am very wary of claims that physicians are universally hostile to the idea of treating patients with documented infections. Unfortunately many of the symptoms present in Lyme disease are very nonspecific and attributable to other conditions and medications. I see first hand the adverse effects of antibiotic treatment including clostridium difficile colitis, anaphylaxis, antibiotic resistance, and blood clots related to catheters placed for iv antibiotics. It took years for the medical establishment to realize after multiple studies that antibiotic prophylaxis to prevent heart valve infections is largely ineffective and harmful. The comment made regarding treatment of tuberculosis is a non-starter. Hence the treatment of sero-negative should be viewed as something with potential long term harms.
I consider myself one of the very lucky few who sought treatment from a highly qualified doctor seeing only patients with Lyme disease.
I was able to find this doctor through two friends who had both suffered with Lyme for years before proper diagnosis, one was Wendy Walker, DVM, a Maryland veterinarian who is one of the leading authorities on Lyme in animals.
I have dealt with feral cats for years and my case was complicated by bartonella, one of Lyme's co-infections, that can be transmitted by cat scratches (Cat Scratch Fever).
Most of my serology tests were sent to veterinary labs because the tests required were unavailable otherwise. My insurance paid for nothing but my antibiotics, which I took for 10 months.
My treatment was a very expensive, but worth every penny. I am well today because I knew a tick bite when I saw one and sought enlightened medical treatment.l
I had chronic lyme for over a year, but it is now dormant. I combined the traditional treatment of a cocktail of antibiotics for a period of 9 months. In addition, I worked with a Chinese Medicine specialist who treated me with accupuncture and traditional Chinese medicine along with a very specific diet. Removing sugar was important since the spirochetes seem to thrive with a high sugar diet. Do your guests have experience with alternative medicines and dietary regulations?
One doctor is a pediatrician who has been harassed by the medical society yet still saves young children from all around the world.
Dr. Charles Ray Jones in CT was investigated because he was making "clinical" diagnoses of Lyme disease in children that he never met. He was writing prescriptions for a pediatric patient that he had never seen or examined. His case certainly does not seem to be considered by any reasonable person as harassment.
Stick to the real facts without stretching and distorting the truth and you may gain more support for your cause.
Thanks for this show, Diane! You and I have met several times @ the National Cathedral and I am so grateful for this show!
I am a 56 year old mother of two adult daughters. We all have been diagnosed with Lyme.
My diagnosis came after decades of symptoms, culminating in a 2-level cervical fusion, full mouth gum grafts, and every other CFS - EBV - IBS etc...
I passed the infections to my daughters in utero.
My eldest was diagnosed bi-polar but never responded to meds. When we found a good LLMD, she was then diagnosed with P.A.N.D.A. and is now fully functioning, with 3 years of integrative treatment.
The younger was diagnosed with Poly-cystic ovarian syndrome at 16 and has had many endocrine issues - also then diagnosed with high levels of Strep and Lyme!
THIS HAS CHANGED OUR LIVES IN SUCH SIGNIFICANT WAYS - and Is VERY REAL.
I appreciate this show!
Diane, I was diagnose with Rocky Mtn Spotted Fever 4 months ago and on my 2nd course of Doxycyline. I had joint pain, headaches, and severe neurological problems that caused me to think I had dementia. My husband was dianosed with Lyme 2 months ago. Could we both have been infected locally? Alma Wolff Ashburn, VA
Please ask the doctors if there is a possibility that the disease is activating a gene mutation causing the symptoms in certain peoples.
Thank you for this very informative program.
Ticks have natural predators - poultry, guinea fowl, ducks, geese - all voracious insect and tick eaters. Unfortunately local jurisdictions frequently outlaw these fowl who could greatly reduce tick and other disease carrying parasistes. Counties cull deer herds, home owners kill mice who carry ticks, why not a tick/insect eradicating program that includes the use of these wonderful, energetic, busy fowl? Farms I've lived on with these creatures have been remarkably free of ticks, slugs, fleas, etc. Chemical treatments of my property in Fairfax County have borne poor results. Still lots of ticks.
Gillian Fitzpatrick
Annandale, VA
Dear Diane,
Can you ask your guests to clarify staging of the disease? My understanding is three stages: Early/Acute, Chronic, and Late-Disseminated.
What kind of treatment protocol is recommended for Late-Disseminated disease? Is there any hope at all for these people?
Thank you for your work.
I'm listening to this show from my bed in NH. I was diagnosed w/CFS in 1992 - 6 months after a tentative dx of Fibromyalgia. I am totally disabled and have all the symptoms mentioned.
My current doc says it is too late to spend the $ for a special Lyme test since even if it is positive anti biotics won't work now anyway.
thank you,
nena
Can Lime's disease mimic gout?
We are very marginalized. . . thank you Dr. Shor
Will one of your panel address the issue of GLUTATHIONE and the toxic load.
Diane,
Thank you for this show. The concern of course are the TICKs!
Diane, would you PLEASE do a show about the research which would prevent ticks from being able to stay attached. This would prevent not just Lyme but most if not all of the other serious diseases spread by ticks whcih are cesspools of infection. This critical research which had been done by Dr Stephen Wikel funding was cancelled by the NIH.
IMO, it was the research that I felt held the most hope for PREVENTION. We have to stop the increasing tick-borne diseases. Why would the NIH not promote this, it makes no common sense!
Jill
HVLDA, chairperson
S.T.O.P., board member (www.stopticks.org)
Dutchess County Legislative Tick Task Force, member
Sir William Osler said "He who knows syphilis, knows medicine"
Lyme is syphilis's smarter cousin with 5 times the number of chromosomes. They found lyme dna in the 5,000 year old "ice man". We are dealing with the oldest and smartest pathogen know to man.
My son contracted lyme in Florida with co-infections. It went neurological very quickly, much quicker than tertiary syphilis.
In 3 years, of hospitalizations for catatonia and other symptoms, 1 million dollars have been consumed of health care. He is almost cured but it has been a difficult nightmare for him and us.
This issue is highly miss-understood and under rated and I would add "he who knows lyme, knows medicine".
Many mental and physical chronic health issues are not properly address, because food is seldom included in treatment or prevention.
Aside from the serious side-affects of taking anti-bionics long-term that may and often do develop into other chronic health issues, is the Lime disease patient's diet taken into consideration and be a part of recovery?
I totally agree, Barbara. Especially in my area of Connecticut, where the disease was named, I would have expected doctors to have been a bit more vigilant. When a young person all of a sudden comes down with arthritis in almost all joints and general fatigue, why not order the titer for Lyme? It took a drug so simple to cure me it's ridiculous. In fact, the same drug that cured me in four days was the same one that I took every day in Afghanistan to prevent Malaria.
My parents live in central Wisconsin and have battled Lyme Disease for years and years, over and over. They live in the woods where deer run all over and leave the deer tics. I have seen how this rules their lives.
Now I live in an area in Utah where the deer run in herds in the city streets. There is such a public outcry battling about what to do about the deer (leave them because they were here first-type reasoning). Could these deer carry infected tics? Will the disease manifest itself in another form (rocky mountain spotted tic disease?) Are we bringing on a plague of disease by allowing these deer to roam freely in our cities?
Thanks for posting this Dolores.
If only we could make people understand.
This situation is as scary and huge in scope ~~~ as AIDS.
WHY are the professionals and the CDC covering it up?
Does it all boil down to the profit motive of our BIG PHARMA?
Despicable, really!
How ironic...after a two hour visit with a homepathy care group, I got in my car to hear the tail end. I have been under treatment for Lyme for a year, with some progress, but it keeps returning. I have the co-infection uncertainty going on as well. And the headache factor is increasing. Hearing these comments, I feel at least among others who understand.
The homepathic recommendation includes a number of herbal supplements, the most important of which is Cat's Claw. it will complement what my very supportive and innovative "Lyme doc" is doing. I will be glad to try something new that will hopefully kick this for me eventually.. Wendy O, I am curious as to your provider in NH...perhaps we are both seeing the same doctor....
Yes, Thank you Jimmy Branch,
Your post scares the heck out of me!
When we read the Nat. Geo. article about the Ice Man - that changed everything for us!
Where is the CDC and WHY are they denying the severity of this?
The mentions of co-infections and the necessity of treating them are appropriate - but the problem is time and money. It took me 12 years to get diagnosed, another several years of active treatment with various Lyme doctors (it takes a while to find a good physician as many of you know). All told after 15+ years I've spent hundreds of hours and about $40,000 (I'm self employed with catastrophic insurance only ) to deal with Lyme. Dealing next with co-infections feels overwhelming. At this point I've decided to live with periodic bouts of illness rather than invest more time and money in doctors, who are rarely helpful anyway. Unless you or a loved one has had Lyme, the world remains oblivious to the costs of this disease.
I do feel fortunate that we have a brilliant LLMD, who treats integratively - and the three of us ARE healing.
Several issues that we will deal with forever are the monumental costs - upwards of 80K per year out-of-pocket for all the different treatments we've needed, in order to aggressively treat.
But the one that concerns me most . . . is the transmission possibility of my daughters to their offspring.
The fear of that consumes me.
To think that this tragedy could be passed on to future generations . . . . . .
I was glad to hear your program on Lyme disease today, both because the topic is so important and because you included a variety of approaches to dealing with it. I am a fan and a regular listener.
This is the first time that I have ever heard a guest on your program who has an alternative/integrative point of view. I hope that you will have more. Whenever possible, I go to integrative doctors. When I repeatedly hear the conventional approach touted on programs such as yours, it makes me think that people aren't thinking of all the ways of treating conditions. Such thinking reinforces the status quo and discourages new ideas.
I was diagnosed with Lyme disease 2 years ago, based on 3 blood tests (the CD 57, the European Western blot, and the American Western blot). I went to an integrative doctor, who put me on several supplements: resveratrol, samento, banderol, and others. I never went on antibiotics. A few months ago I was retested with a new blood test, which is even better than the others, and found to have gotten rid of it.
I hope that you will include more alternative/integrative/holistic people on your program in the future.
Molly Hauck
Kensington, MD
In 1998 I began to have severe fatigue and pain in almost all of my large joints. All of my blood tests were normal. At that time I was given an ELISHA test for Lyme, which was negative.
I was diagnosed with sero-negative rheumatoid arthritis and put on the antibiotic minocycline when I balked at starting methotrexate. Within weeks, I was much better. For nearly 10 years I was symptom-free on a daily low maintenance dose of minocycline
Four years ago, the symptoms suddenly came back with a vengeance. My rheumatologist refused to prescribe minocycline anymore; again I balked at taking immunosuppressants and went without treatment for a year, getting increasingly worse, until I was diagnosed with Lyme after I asked to be tested and got a positive Western Blot.
I now believe Lyme, not RA, has been the cause of my problems all along.
I believe the delay in diagnosis was due to the shameful politicization of this disease and the polarization of the medical community that makes doctors who treat Lyme suspect and labels people who have it as hypochondriacs. I have seen three rheumatologists, an orthopedist, a podiatrist, a gastroenterologist, a hematologist, and three internists trying to get to the bottom of this. I have also tried alternative medicine, acupuncture and Chinese herbs to alleviate my suffering. I have been tested for syphilis and HIV (I am a married woman in my 50's) as well as a whole host of rheumatic diseases. The only positive test result I ever got was the Lyme test that I had to ask for.
I am grateful to the clinicians on the front lines who have the courage to risk their professional reputations by treating Lyme appropriately, even though the medical establishment is light years behind.
Diane,
I know the program is over and your guests are gone.
After reading the other posts, it occurs to me that there are so many issues left un-touched.
Will you please consider more shows dealing with the catastrophic health and ethics concerns involved in what I call "Lyme & Co.", because of the dozens of co-infections that my girls and I have serological evidence of - way too numerous to name here.
One thing that hasn't been addressed yet is the issue of diagnosis~
The diagnosis of Lyme Disease is not serological - but in fact, CLINICAL .
This is a very important point for anyone seeking help for symptoms.
I also wanted to let you know that my eldest daughter was infected in utero, 26 years ago -then spent several years as a socially conscious young woman, DONATING BLOOD thru the red cross, before her diagnosis!!!!! If this doesn't worry people, I don't know what would.
Diane,
I know the program is over and your guests are gone.
After reading the other posts, it occurs to me that there are so many issues left un-touched.
Will you please consider more shows dealing with the catastrophic health and ethics concerns involved in what I call "Lyme & Co.", because of the dozens of co-infections that my girls and I have serological evidence of - way too numerous to name here.
One thing that hasn't been addressed yet is the issue of diagnosis~
The diagnosis of Lyme Disease is not serological - but in fact, CLINICAL .
This is a very important point for anyone seeking help for symptoms.
I also wanted to let you know that my eldest daughter was infected in utero, 26 years ago -then spent several years as a socially conscious young woman, DONATING BLOOD thru the red cross, before her diagnosis!!!!! If this doesn't worry people, I don't know what would.
Michelle,
As you know, the names of LLMDs are not said out loud but if you Google Wendy, New Hampshire, chickens - you can probably find me.
Someone mentioned natural predators, it's one of the reasons we'll be getting Guniea hens this summer to add to our flock. Those birds in particular LOVE ticks.
I want to thank you for your show on behalf of myself and all the Chronic Lyme Disease sufferers who are all but hidden in the shadows of medical controversy along with the brave physicians who have become the precious but alarmingly few Lyme Literate Medical Doctors (LLMDs).
Too many of us are gravely ill, fighting a battle against ignorance and forces almost beyond understanding seemingly hell bent on staying a course that would prevent people like me from medical treatment and condemning us to lives filled with neurological, psychological, psychiatric and other horrendous symptoms.
I was a once incredibly active educator/mother/runner/artist and woman who has been rendered all but housebound and barely able to function due to the profound fatigue, pain and cognitive impairments, increasingly more incapacitated with all the chronic manifestations of my CDC POSITIVE Lyme diagnosis of July 2005 in New Orleans (A diagnosis "impossible" since there were purportedly no cases of Lyme endemic to Louisiana.) after at least one year of countless doctors, specialists and misdiagnoses
Since my confirmed diagnosis, only weeks before the added devastation of Katrina, I fight alone. I have had to endure losing my job, my home, custody of my son and most important relationships. I have gone deeply into debt and without resources, the very few doctors who bravely specialize in Lyme, as well as the necessary treatments, are financially unattainable.
Along with my Chronic Lyme brethren, I am isolated and left to my own, now fairly meager devices is it any wonder that try as we might, as nearly every aspect of our lives before Lyme drops away, we go from despair to despondency?
I keep hoping the cry of countless people living with this chronic health nightmare of epidemic proportions, might come to the attention of as many people as possible. I know your thoughtful presentation this morning will help.
Now, if only my cry in the dark could be heard AND answered.
Diane thank you so much for putting up both sides of the issue. I think it helps the public to understand what we are up against (the staunch position of IDSA) and you chose great spokesmodels to represent the ILADS side of things--the fact that the bacteria persists is absolutely key. I hope you do a follow up that goes more in-depth into the treatments that people are using. There are no standards because everyone's bit history, genetics, lifestyle, and environvent are different and create unique situations. It is important to find doctors that really look at the individual and the Dr. on your show is among the most conservative and mainstream on the ILADS side of the debate--largely antibiotics focused. Not everyone will get better with that approach. For example I have gotten much better since leaving his practice and going to a more open-minded holistic approach--one that looked at my nutritional deficiencies, genetics, hormone levels, etc.
My original GP missed many chances to treat me--I walked in with the tick in a bag. I asked for the better of the two "standard" tests. There was so much she didn't know, so much she missed. So much that she even called me at home and tried to convince me I didn't have Lyme even though I had a positive Western Blot and 56 of the 75 or symptoms.
Please don't close this show and forget about us. Please dig further into this issue and continue to raise awareness for the many people who rely on mainstream physicians.
Thank you for addressing this important public health issue. It is imperative that the powers that be begin to take it seriously. It is in our blood supply. Swift diagnosis and aggressive early treatment does seem to help. My 8 year old daughter has been ill for nearly three years with Lyme and 2 other tick borne co-infections. A previously healthy child, she has suffered extreme fatigue, neurological and cognitive issues, bradycardia (slow heart rate), Pseudotumor cerebri (inter cranial pressure causing damage to her eyes), joint pain so severe she cannot dress herself or bear having shoes on her feet and much, much more. She was too sick to do schoolwork, too sick to play with her friends. Despite positive test results, many doctors have swept her illness under the carpet. At one local children's hospital, we were told that our daughter was very sick with a mystery illness. Yes, the doctor actually used the word "mystery!" She has lost years of her childhood because I could not get a diagnosis and appropriate treatment. I was sent from one doctor to the next. I finally found someone to help her, but so much damage has been done, it's difficult to see a positive outcome. We all need to do our part to make sure this doesn't happen to future Lyme patients.