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
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I have been bitten by infected ticks twice, but these were not reported, therefore any map (or other report) of Lyme Disease cases does not include mine. This is important because I, like many other Lyme patients, contracted the illness in a state that consideres Lyme Disease infection to be rare. This keeps doctors from pursuing a diagnosis of Lyme Disease and co-infections.
It is almost laughable that Lyme has this 'rare' designation since our state animal is the white tailed deer! Sometimes we feel it should be the camel with it's head in the sand instead ;-)
The first bite was in the 70's before Lyme was given this name (instead of Master's disease or relapsing fever). I suffered for over 30 years, not knowing why I had such a strange assortment of symptoms that didn't seem to have any connection nor cause. In 2003, I got my second tick bite. I was prescribed the IDSA recommended course of antibiotics, which, of course is not enough to rid anyone of this illness. This organization denies that Chronic Lyme or Late stage Lyme exists, so it is no wonder the 6 Infectious Disease doctors I contacted in my area would not treat me.
I was finally able to receive a diagnosis due to the diligence of the doctor trying to find the cause of my Fibromyalgia, Chronic Fatigue, digestive, neurolgical and visual issues, etc. After two years of working to help me overcome the extreme fatigue, brain fog and disorientation etc. he had an IGenex test done. So, in 2010 - 23 doctors and 37 years after first contracting this illness- I started treatment for Lyme Disease.
My decades long search for a diagnosis and treatment is not that unusual. Thousands of us have to endure years of suffering. I am one of the fortunate ones, I am still walking and talking, I have improved and can see the light at the end of the tunnel now.
Thank you so much for bring awareness to this complex and controversial illness.
Thank you for covering this topic on your show. Lyme disease is more complicated than it sounds. Various pathogens may be transmitted by many vectors including ticks, mosquitoes, biting flies, mites, fleas etc. Borrelia, a spirochetal bacterium is just one of a myriad of pathogens that can be transmitted. Various bacteria, protozoans, virus, and parasites can be transmitted while frolicking outdoors. My 18 yr old daughter had to drop out of the IB program in high school because she was so ill and physicians are ill equipped to understand the complexity of these infections. She has tested positive for Borrelia, Babesia duncani, Ehrlichia Chaffeensis, Bartonella, Brucella, Coxsackie viruses A and B, Herpes simplex virus 1, Epstein Barr virus, Cytomegalovirus, papillomaviruses, Parvo Virus B-19 and I have antibodies to Mycoplasma pneumoniae, IgM + for toxoplasma gondii, Chlamydia pneumoniae and various parasites, ie tapeworms, flukes, nematodes. The American Veterinary Association has a list of pathogens that hunters should be aware of. This is an epidemic that is being swept under the proverbial rug for if the public knew the real truth about lyme disease there would be mass hysteria. There is no way we can vaccinate for all the pathogens that the tick or other vector can transmit. Our government thinks they can find a vaccine for everything and thereby solve the enormous problem. We need to throw away the useless guidelines of the Infectious Disease Society of America for they have no idea what they are dealing with. The immune systems of people with lyme are so compromised that they can not fight off the plethora of infections and opportunistic pathogens.
Thank you for covering this topic on your show. Lyme disease is more complicated than it sounds. Various pathogens may be transmitted by many vectors including ticks, mosquitoes, biting flies, mites, fleas etc. Borrelia, a spirochetal bacterium is just one of a myriad of pathogens that can be transmitted. Various bacteria, protozoans, virus, and parasites can be transmitted while frolicking outdoors. My 18 yr old daughter had to drop out of the IB program in high school because she was so ill and physicians are ill equipped to understand the complexity of these infections. She has tested positive for Borrelia, Babesia duncani, Ehrlichia Chaffeensis, Bartonella, Brucella, Coxsackie viruses A and B, Herpes simplex virus 1, Epstein Barr virus, Cytomegalovirus, papillomaviruses, Parvo Virus B-19 and I have antibodies to Mycoplasma pneumoniae, IgM + for toxoplasma gondii, Chlamydia pneumoniae and various parasites, ie tapeworms, flukes, nematodes. The American Veterinary Association has a list of pathogens that hunters should be aware of. This is an epidemic that is being swept under the proverbial rug for if the public knew the real truth about lyme disease there would be mass hysteria. There is no way we can vaccinate for all the pathogens that the tick or other vector can transmit. Our government thinks they can find a vaccine for everything and thereby solve the enormous problem. We need to throw away the useless guidelines of the Infectious Disease Society of America for they have no idea what they are dealing with. The immune systems of people with lyme are so compromised that they can not fight off the plethora of infections and opportunistic pathogens.
Thank you very much for getting the message out to the public. As a lyme victim and advocate, I see too many people contracting lyme and not enough being done. Through more education and awareness we can bring hope to the many and maybe prevent someone else from this horrible disease. your friend in lyme, Barbara Maryland
Thanks for bringing light to a very serious disease. The people who continue to allow the velocity of this to be hidden from public will one day have to admit the truth. I believe the citizens of this country will be horrified when they find out that education could have saved alot of lives from the devastation this disease causes to the victim and their loved ones. The CDC claims that the state of Texas has no deer ticks and is not epidemic to lyme disease. I have found three ticks in my yard. They were all tested. Not one but all three were deer ticks and all three were determined to have the bacteria that causes lyme disease. The state of Texas on their web site about lyme disease says that transmission can be from ticks, fleas or possibly other biting insects. The CDC is aware that in the 1990's the state of Texas tested fleas from 10 counties in Texas and found the fleas harbored the bacteria in their guts.
Because the CDC has decided to omit the truth about this disease the doctors in Texas (and other states) do not even think about lyme as a possible diagnosis when the patient seeks treatment for many different symptons. The patient is then left with a bacteria that continues its track to disseminate in the body leaving the person very ill and hard to treat. Almost 35 years ago the world began to know about lyme disease. The bacteria has not stopped at the Conneticut border and not crossed. It has moved and unfortunately its in more states and its being transmitted by more than the tick.
Dear Ms. Rehm,
I would also like to thank you for addressing this topic. In December, 2010, I was diagnosed with Lyme Disease at the age of 46 after 4 years of having one health crisis after another (crushing fatigue, chronic bronchitis, vitamin D levels that were not measurable, joint pain, hip pain, back pain, excruciating headaches, brain fog, extreme body heat irregularities, dental issues, etc.).
This journey is lonely as others who are on it will tell you. Many of us have been told that we aren't mentally stable; that the symptoms are all in our heads. Doctors are not equipped to diagnose this disease, let alone treat it. The CDC and IDSA have NEGLECTED us, and I don't know why. Some have said that it's because Chronic Lyme is expensive to treat. I really can't believe that when we have AIDS, cancer and transplant patients on expensive medications for life. Is it the egos of the doctors/researchers making these decisions? I have heard members of the IDSA state that science does not back the claims of those who continue to have symptoms after a month or two of antibiotics. However, the research is there and those of us dealing with this are living proof. I'm not a doctor, but I do know that MANY bacteria can be resistent to antibiotics, and that the antibiotics must be selected to target the resistent strains. These bacteria are similar to the syphillus spirochete. Syphillus is extremely difficult to treat. Why aren't doctors/researchers looking at the models of treatment of that disease?
I'm praying that I will soon get my life back so that I can serve my family and community in the capacity that I desire. In fact, my hope and prayer is for all who suffer from this disease will be blessed with the restoration of their health as well.
Thank you again! M.A. Filler
Yes, Diane, thank you for this subject. I live in the Midwest and most people in our rural area are well aware of Lyme disease and many have seen the devastating effects of the disease. We have had an extremely mild winter this year, which on the surface seems good but on the other hand, my husband found a tick outside on the patio yesterday. Normally, we would have very cold weather and lots of snow. We need to be extremely careful while being outside during this mild winter which is something that we had never before considered.
I see no reference for your claim as to where the CDC has allegedly definitively stated that there are no deer ticks in Texas.
This is what the CDC actually said:
We therefore analyzed the frequency and identity of pathogens and bacterial agents in ticks removed from humans and subsequently submitted to the Texas Department of State Health Services, Zoonosis Control Program, from October 1, 2004, through September 30, 2008. The data showed associations of bacterial agents and potential vectors.
Tick-related illnesses may pose unidentified health risks in areas such as Texas, where incidence of human disease related to tick bites is low but well above zero and where ticks are not routinely suspected as the cause of disease. Cause, treatment, and prevention strategies can be better addressed through collecting sufficient data to establish baseline assessments of risk."
Thank you for having this discussion of Lyme Disease on your show. I look forward to listening to your program this morning.
Thanks Diane for hosting this topic.
The term "Lyme" is so controversial, I live in Missouri and was diagnosed as having Borreliosis (Borrelia Burgdorferi) & Babesiosis (Babesia), both are "Lyme" coinfections. The awareness of these coinfections across the US is paramount. I had previously been tested for Lupus, various cancers, rheumatoid arthritis and tuberculosis before "Lyme" was even considered.
Thanks Diane for hosting this topic.
The term "Lyme" is so controversial, I live in Missouri and was diagnosed as having Borreliosis (Borrelia Burgdorferi) & Babesiosis (Babesia), both are "Lyme" coinfections. The awareness of these coinfections across the US is paramount. I had previously been tested for Lupus, various cancers, rheumatoid arthritis and tuberculosis before "Lyme" was even considered.
Thank you Diane. I am a big fan of your show, and I am so appreciative that you are raising awareness of this terrible illness. I have had Lyme for several years (that went undiagnosed) and was just diagnosed about 6 months ago after debilitating pain and fatigue. We need to teach people the symptoms of Lyme, and the medical community needs to recognize and acknowledge peoples' sufferings and offer effective support, solutions and treatment.
Thank you!
Kaitlin
Maryland
http://www.fileden.com/files/2012/2/27/3271113/IDSA%20Comments%20Document/Official_IDSA_Comments_Document_for_Congress_2-15-12_FINAL.pdf
http://www.fileden.com/files/2012/2/27/3271113/IDSA%20Comments%20Document/Official_IDSA_Comments_Doc
www.fileden.com
This says it all...
I hope you fold into your conversation the problem of Lyme disease in pets. Our dog has had Lyme disease for 5 years now. Obviously, the things dogs love to do (running through the woods, rolling in the grass) puts them at risk and their inability to vocalize symptoms makes it a challenge.
Doctors, government agencies and insurance companies who refuse treat or pay for the treatment of Lyme with long term antibiotics are complicit in the suffering, destroyed lives and even death of countless individuals.
I would like to see the doctors who refuse to acknowledge the existence of late stage and/or seronegative Lyme officially challenged to put their money where their mouths are. For all of these individuals-- such as Dr. Eugene Shapiro of Yale (seen in the film "Under Our Skin")-- I ask if they are confident enough in their assertions that they would allow themselves to be infected with the Lyme bacteria and a mix of other coinfectors known to be transmitted by Ticks. The doctors would not know what exactly is in the disease mix that they receive-- it is like the "grab bag" that the rest of us got. They would then be required to wait a number of years-- perhaps a different amount of time for each individual (say 1, 3, 5, 7 or 9 years) before they were permitted to test for the disease using the ELISA and Western Blot blood tests, and before they were allowed to treat themselves with the two weeks of oral antibiotics that they are so sure cures all cases of Lyme. I am 100% confident that not a single one of these individuals in their ivory towers would take this challenge because they know the severity of this disease and the wrongfulness of their stance.
There is a long history of self-experimentation in science and medicine, so such an undertaking is not that unusual. The point, for me, is whether these people are willing to put their own health, lives, families, careers, etc. on the line to prove their commitment to their position on this matter. I don't think they have the guts or the conviction to do that.
I currently have 3 children who are being treated for chronic Lyme. One son went from being the captain of his HS swim team in the winter to needing a cane to walk in the spring. We took him to 11 doctors and he was diagnosed with everything from Psoriasis to Rheumatoid arthritis to psychiatric disorder (stress) - turns out he was positive for Lyme, after being on antibiotics since this past August he is for the first time in 6 years showing progress in treatment.
We are willing to treat those with Tuberculosis long term with antibiotics, why is it such a leap to think that there may be other bacterias out there that might need long term medication?
The biggest problem not being addressed is that of the OTHER infections! A patient who has symptoms after successful Lyme treatment may most likely have another bacteria. In my case, I treated Lyme successfully and months later had more, different symptoms. Fortunately, I found a knowledgeable doctor who recognized it to be Bartonella bacteria, tested for it and successfully treated me.
I'm very pleased to see Lyme in the news, but I would like the public (and physicians) to know there are other infections that could be hiding behind the Lyme.
Traci (Severna Park, MD)
What about those people who were never diagnosed until 10 or 15 years after being bitten? I never took any kind of antibiotics for any reason, yet, test positively for Lyme and have the symptoms of fatigue and joint pain 10 years after I know I was bitten?
My girlfriends mother has suffered from "chronic" lyme disease for over 30 years. She was originally diagnosed and treated for Lyme disease when she lived in Pennsylvania, and she recuperated within a couple months. Periodically over the next 29 years she would have a lyme-like flare up of nausea, vertigo, etc... and has been treated for an incredible slough of other things. She was, like others, given an assortment of drugs that would distort her behavior, cause other issues and not treat the problem lead her to acupuncture and "de-tox" programs. Of course, none of these things helped. Twenty years ago she moved to Florida, adding to the problem when trying to find a lyme specialist, so the first few trips to the doctor resulted in negative lyme tests followed by an unwillingness to treat her. Last year she was able to find a lyme specialist that was able to do a more in-depth test (I'm sorry that I do not know more details of this test), but her specialist was able to get a positive test and now she is back on anti-biotics, and it does seem to be helping. We just now worry about the long-term effects.
Could it be that the bacteria sets up an autoimmune response? The vaccine that was developed for humans was withdrawn because it caused, in some individuals, joint pain - could the bacteria also be doing that and that once started the symptoms persist? The bugs are gone but the autoimmunity persists.
Wendy-o,
Have they been checked, tested for a co- infection? I had a psychiatric disorder (or 2) (and other symptoms) that did not clear with Lyme treatment but I was found to have Bartonella and once I cleared that, I am normal again ;-)
Traci
As a huge fan of your show, I am glad you are addressing Lyme disease. I have had three separate positive tests, and have now been suffering for three years. As a college graduate and someone who thrives on the outdoors (I was going from archaeology project to archaeology project), the infection was a likely option. I went from having the first flu symptoms and was treated with such a brief doxycycline treatment, that I eventually became very ill. I now have serious cardiac symptoms, horrible headaches, vertigo, and a multitude of other problems. It is a horrible feeling to realize you have no where to go, no doctors that will listen to you. Especially as a young attractive 25 year old, I have literally been told "you're probably just depressed, thats what is leading to all of your problems". This is not constructive, lyme can clearly persist. Thank you so much for addressing this seriously overlooked illness, it will become a huge problem in the next ten years which hopefully means a cure for all of us who are forced to put our lives on hold.
I was sick for 12 years before I was finally diagnosed with Lyme and treated with antibiotics. My symptoms are better, but not fully gone - I still have periodic bouts of severe illness with "Lyme-like" symptoms. What I rarely hear addressed is what happens to a body infected with Lyme that goes untreated for 12 years. Can one month of antibiotics really fully address 12 years of infection and illness? For whatever reason, I am not better.
By the way, I am physically active, eat very well, am happily married, have a career I love, many friends - so being sick is not a symptom of boredom or depression or "all in my head", as I've been told by some doctors.
We have finally found a lyme-literate Dr who is treating all 3 for co-infections (and one for a red blood parasite) I have a microbiological background and so every time I go to his office he recommends another book for me to read (usually a medical text. )
I live in (wooded) NH where Drs are protected in how they treat Lyme. I'm pretty sure my other 3 children as well as my husband and I are infected. We need to clear the first batch of kids before we can go to the next set (us adults will go last).
Lyme disease is a hybrid of multiple parasites and bacteria known as coinfections. I have had doctors in Princeton who state bartonella only occurs in sheep, yet seen positive test results. The main lyme testing is flawed. However, there are better testing available, but doctors are not willing to use these tools.
I know a number of people fully cured from long term treatment programs from a very few doctors. One doctor is a pediatrician who has been harassed by the medical society yet still saves young children from all around the world.
Chronic symptoms are a complexity of infections, environment, nutrition and psychology.
The lacking aspect from the medical community is broad blood scientific testing analysis across nutrition, parasites, bacteria, IGG counts, etc over a period of time. Since the coinfections can consist of many variations strains
As a long term HIV patient the main problem I have is fatigue. My amateur hypothesis is that this is caused by my over-working immune system. I ALWAYS feel better while on anti-biotics, then back to lethargy afterwards. Could the same scenario be true of lyme disease?
a great book on the topic is Cure Unknown by Pamela Weintraub - she reports on her family's experiences with Lyme disease as well as, the history of the disease and how it has been (mis) handled in the medical community.
Great show,
I had the Lyme vaccination series back in the 90's. I work in a job where tick bites are a hazzard of the job and get bit a couple of times a year. I'm usually able to remove the tick within a few hours. I get tested each year for Lyme, so far always negative. How long do the vacines work?
Thanks
Chris Beckman
Rehoboth Beach Delaware
I had a textbook case of Lyme Disease for over a year. Two civilian and one military hospital couldn't diagnose me. I lived twelve miles from Lyme Disease and would might have died had I not had a girlfriend from the local area who told me to go back to a doctor and TELL them to order a specific test for Lyme. I went from a zombie to almost full health in about four days. Lyme made me feel like I was prematurely aged and I was mentally starting to dissassociate. I couldn't even climb my stairs and I was 25. Bless dioxycyclin!