On Demand
The Lyme Disease Epidemic
Tuesday, July 01, 2008
The Center for Disease Control estimates that there are over 200,000 new cases of Lyme disease a year. Pamela Weintraub, whose entire family contracted the disease, explains why it has exploded and what can be done to stop it in Cure Unknown: Inside the Lyme Epidemic.
Events: Pamela Weintraub will be speaking and signing books
Saturday, July 12 at 1:00 pm
Ridgefield Library
472 Main Street, Ridgefield, CT
Pamela Weintraub will be speaking and signing books
Friday, July 18 at 7:00 pm
Borders
162 East Main Street, Mount Kisco, NY
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My wife is 56, was a teacher for 20 years, been disabled with neurologic lyme for 6 years. She developes severe eye pain and migraines if she is expposed to any light, and thus wears dark glases all of her waking hours, most of which are indoors in the dark. She needs constant medication to even exist. Originally she was told she was depressed, and 29 doctors later we finally learned what she had. Anyone who says chronic lyme does not exist, come on over for a visit. I don't wish this on anyone, but for those doctors that deny its existance, a little bite on their arm from a tick might do some good to bring awareness.
Please ask Pamela Weintraub to also mention that, surprisingly, dogs can also get Lyme disease. My mom and her golden retriever both contracted Lyme disease around the same time--she was working in the garden, he was eating from it. The vets thought she was nuts, but she ordered a test for him when he began limping, and it came back positive.
Can you get lyme from another person? For instance if there are wounds or cuts, needles, etc.? Thanks.
No, you can't get Lyme from another person. Only from a tick to a person.
From the Weston Price Foundation Website:
"Q. I was recently advised not to drink milk because of the possibility of it causing Lyme Disease. Please comment.
A. This is just one more slur against raw milk. Raw milk contains components that kill all pathogens. One body of opinion believes that Lyme is caused by pesticides, not a virus. One of our members, Dr. Ron Schmid, cured himself of Lyme disease by drinking lots of raw milk."
About Lime disease and doctors:
One problem with doctors which I would guess many people have encountered: Doctors do not like to be contradicted by non-"experts". Most in my experience are particularly hostile to patients informing doctors.
Your quest should be commended for speaking out and bringing this problem to light.
I have a similar story related to a Dr. being hesitant to test for lyme and instead prescribing me antifungal cream (for my rash) and physical therapy for my severe joint pain.
Is there some financial reason why Drs would not want to test for lyme or is it just arrogance? Are HMO's less willing to reinburse these tests? My questions stems from a lack of understanding why Drs would be resistant to perform such a simple test requiring nothing more than drwaing some blood.
Raddy
In 1997 my 11-year-old son had symptoms consistent with Lyme. He was treated with the standard course of antibiotics, but then later developed neurological symptoms resembling narcolepsy. The infectious disease specialist was very sceptical that this could be Lyme. Luckily, after having to be checked for many other possibilities, my son was finally given a course of IV antibiotics. Most specialists would preface their remarks by saying,"There's still a lot we don't know" or, "there's a lot of controversy..."and then go on to express a totally concrete position. The CDC and other guidelines, at least then, were unduly restrictive.
This segment brings back horrible memories for me. I had Lyme as a teenager, and my parents at first dismissed the exhaustion I felt as laziness. They finally took me to the doctor who confirmed that I was indeed lazy. Finally, after months, my knees swelled up and they took me to the doctor at our HMO.
Still, no diagnosis of Lyme. I was told that I had some incredibly and improbably rare joint disease, which, conveniently, had no treatment other than exercises and OTC painkillers.
Finally my parents took me out of the HMO system and brought me to a specialist. He agreed with the diagnosis of that weird joint disease. Only after my parents INSISTED on a test did he agree to do it. And, it came back positive.
My experience left me disgusted with the medical establishment and doctors. The arrogance and inability of so many doctors to listen and believe what their patients tell them is astonishing to me.
Further, the unwillingness of HMOs to actually treat their patients is appalling. Our health care system is seriously broken when a previously healthy teenage boy can go to a doctor and be dismissed as lazy or has some weird untreatable joint disease because actual diagnosis and treatment would cost more.
In 1993, yes. But in 2000, for a doctor to refuse to test for Lyme is near-incompetent.
Had she suspected Lyme, she may have had better luck to go to CT doctors.
I hate to think of the number of kids exposed. My in-laws in Tarrytown check their kids every night.
My wife has lime and has doubled her cd57 count by treatments using rife technology. Has Pamela looked into rife technology.
Best,
-M-
I already called in - but I really want to be on the show having JUST gone through this experience with my 11 yr old - in Mahattan - had a better experience but would love to share it on the phone. Our peditrician, Dr Doris Fine of the Manhattan Pediatric Center (95th bet 2nd and 3rd) took us very seriously!
THANK GOD!
We need to spread the word to all parents that it's around even in Central Park! Must take these bites seriously!! (I wasn't!)
Alison H
Lyme Disease, when diagnosed right away, is quite curable. The big problem right now is properly diagnosing those who have been misdiagnosed years ago and who have suffered with Lyme symptoms for years and years and gotten no help from mainstream medicine.
A further big problem is that very few doctors test for or recognize the many co-infections with Lyme--Bartonella, babesia, ehrlichiosis, and several others.
My respect for doctors, and especially IDSA, has been severely diminished.
I had a dog who died from Lyme Disease. The vet was able to diagnose it from a single blood test in less than 10 minutes. Why is the test so easy in dogs, and so complicated for humans?
Lyme disease is not transmitted between people or from dog to person. It requires direct transmission from the tick bite- each life stage of the tick feeds only once then drops off.
Please note- the tick's first host is the mouse. The deer are the final host. Many years ago in Long Island, the deer were depopulated by 80% and the incidence of lyme disease was unaffected.
I've had Lyme for 20 years now. It is real, call it whatever you want, Chronic Lyme, Late Stage Lyme, I don't care. It is real, the symptoms are real, it is debilitating.
Over the past few years I've been tested for everything else under the sun, Lyme was the only thing that I ever tested positive for.
So either the thousands of us who are suffering are crazy, or chronic Lyme does indeed exist.
a really smart pediatric endocrinologist friend of mine suggested havign a lyme titre!
Maybe all these organisms and their cousins have been there all along but we have lost our ability to "fight them off" with environmental and industrial compromises
I pulled a tick off of my 6 year old this weekend after a visit up in Duchess NY. I was calmly watching for a target. NOW, I am completly wigged out!
In 1997 my son had symptoms consistent with Lyme and was given the standard course of oral antibiotics. He then developed neurological symptoms resembling narcolepsy. The infectious disease specialist was highly sceptical that this was due to Lyme and insisted that my son be tested for every other possibility first. Finally, when his blood was retested at Stony Brook and came back positive, several weeks later, he was able to have 3 weeks of IV antibiotics. Most specialists would preface their remarks by saying, "there's still a lot we don't know about Lyme Disease" or"there's a lot of controversy" and then go on to express a completely rigid position.
Thank you Mr. Lopate for covering this important and complex issue, and thank you to Ms. Weintraub for a great work of scholarship.
I had a bulls-eye rash in 1998, and was told by doctors that it was a spider bite. In the years that followed, I became very ill with increasing cardiac, joint, muscular, respiratory and neurological symptoms.
By 2006, I was finally diagnosed with borreliosis and a tick co-infection, babesia. Now after two years of multiple, often high-dose antibiotics and antimicrobials, my health is much improved.
It has taken this long a treatment period to make these gains, as borrelia is a persistent infection that often sequesters in immunologically privileged sites.
Please ask Ms. Weintraub about tick-borne coinfections that are present in the Northeast, such as babesia and bartonella. What research is being done on what viruses and bacteria are even in the ticks?
Please, Please tell people about all the coinfections that are out there - bartonella, babesia, echrelosis, mycoplasma, etc.
I never saw a tick, no rash, misdiagnosed with lyme for four months, misdiagonsed with bartonella for 12 months. 18 months later I am still treating. I am only about 80% back to my normal self.
I still have enchephlitis, although it is much better than a year ago. Oh, I live in the middle of a city and don't camp or hunt.
Some research suggests that there may be other vectors in addition to ticks, mice and deer. Mosquitoes, transmitters of West Nile Virus, have come under suspicion. There is some suggestion that Lyme can be passed intra-uterine.
an article in the new yorker in the early 90's detailed the discovery of lymme disease;that scientist had to fight the medical community to listen to him; he also talked of it probably being around a long time - at one time one symptom was referred to as montauk knee because so many people on eastern long island had knee pain.
Just a follow up on my comment #9: I was misdiagnosed for almost 5 years until I finally was diagnosed.
I went from being on the HS varsity track team to sitting out all sports through college because my arthritis became so severe.
What kind of incompetent medical establishment can think that this is normal???
As I am listening to this segment I am getting more and more worried about the course of treatment for my 11 yr old - the Ped said we caught it early enough that the 3 weeks Amoxicillin is ok - any thoughts??? HELP!
Alison H
I was diagnosed with Lyme in 1999. I was treated with infused anti-biotic. Will I ever have a clean test again? I've asked my Rheumatalogest and my Neurologist ( I also have MS and RH) and neither of them seem to be able to answer the question.
I am an active gardener on Long Island's east end and got Lyme disease twice in one year (Spring and Fall). Lucky for me, I exhibited the bulls-eye both times, took the antibiotics and recovered completely. Question is, if I get bitten again, will I show the bulls-eye again, as I did before?
Please ask your guest if she knows of an algae based drink called LIMU. I've been told that it may help fight Lime disease.
I, on the other hand, was OVERDIAGNOSED several years ago. Psych drugs made me crazy and disabled, and I had to see people outside the city (esp. away from Columbia), to figure it out. I was infected -- even in the nervous system -- but not ILL from it. Once the psych drugs were stopped, I was OK, but recovering from them. It took Drs. Wormser in Valhalla and Halperin in NJ to look carefully and see that my brain was OK, and still is. But I'm still recovering from overuse of unnecessary psych drugs.
If it wasn't for an obscure article in the Times in 1989 I would have been really screwd.
I was bitten and within 24-48 hours I was sick as a dog. As if I was going cold turkey off heroin. Super high fever and shakes and totally painful.
I had the classica bullseye, the test result at the time came up negative even though I was running an emergency grade fever.
My thoughts over all for your guest is ...what happened to common sense. She is so far up the "doctors.." I'm surprised she has an advanced degree in science (i think?). One needs to do their own research but heck ...
I'm sorry for her son but ....didn't she have a glue?
i had gotten bitten by 13 ticks over the late summer and early fall last year.
i had a rash and then all the symptoms. i had a fever of 104 and could not handle light or sound, and could not move my head due to severe neck pain. i went to the ER and they said nothing was wrong and to go see my PCP.
two weeks later, after 200mg of doxycycline a day, i was not feeling better and asked to see a lyme doc. i was sent to an infect disease doc who said i don't have lyme.
fast forward to 8 months later, symptoms much worse as time went on...
i was positively diagnosed with lyme by a neurologist. sent to same infect disease doc.
he said it was "acute" lyme. i disagreed.
a month after that, i tested positive for lyme + babesia + mycoplasma + rocky mtn spotted fever.
then i got a copy of my infect disease's letter to my primary...he said in that letter that i don't have any symptoms of lyme (neck,rash, tick bite, etc) even though that is EXACTLY why i went to see him!
now i am on longterm medication and am suffering.
I've been struggling with a myriad of disabling Lyme symptoms for 12 years, 8 of which I was undiagnosed. Now I know what I have, as well as having the co-infections Babesiosis and Bartonella. In the four years since I started being treated, I've gone from being non-functional to working five days a week, and able to have hobbies, a social life. I am definitely still sick and struggle with this every day. A problem is that I live in Canada, and so doctors say "we don't have Lyme in Canada", even though there are more and more cases. In Montreal, we are just a five-hour drive from the most Lyme-infested area! I'm glad to see that people are starting to talk about this issue more.
I was dismissed outright when I asked my NP for a test when I saw something that could've been a rash - she didn't know I am a doctor's daughter so I know better than to be dismissed! The attitude! I have to send her notice of Pamela's book
Allison (25): If it is caught in time, Lyme is perfectly treatable. If your son has not had the symptoms for a long time, oral antibiotics will probably be fine. Even after being misdiagnosed for 5 years, a two week course of IV antibiotics (luckily) cleared me of the disease (though not all the symptoms).
Thank you for your intrepid research!
I had Lyme disease and thankfully went to an emergency room in CT. -- where they recognized the disease and immediately treated me.
I had made an appt. with my doctor to follow up -- since I had already made the appointment. When I saw him the following Monday, described the symptoms, the bull's eye, and the diagnosis from the emergency room -- he questioned if it was really Lyme.
If you go to a NYC doctor, you MUST impress them with the incidence of Lyme in your area, where you have been, and possible exposures.
Do not accept ignorance from your doctor. Ask them if they have ever seen or treated Lyme. This is an extremely serious illness and the earlier it is treated, the prognosis is good. If you wait, it can lead to complete disability and chronic and irreversible issues.
Dear Mr. Lopate, I so looked forward to a discussion of this particular subject. As a resident of an area with a high percentage of Lyme infected persons...and their dogs, any information derived from your guest's comments is of interest. BUT, listening to Ms. Weintraub's presentation was perhaps as painful as the disease itself! Surely there are other "experts" who could have presented the material without an explosian of stuttering, muttering etc. Am I unsympathetic?
YES....and very disappointed.Thanks for trying. Marie M. Merzon
In going back over my medical records it became obvious to me, if not my doctors, that I acquired Lyme in 1988. I know I've pulled two deer ticks off me back then, but I never had a rash. I was tested repeatedly by the largest medical group in NYS, as well as at the VA, and I was always told I tested negative. When I finally got the actual test results, a Lyme-literate MD disputed the negative findings and concluded I had been positive all along.
Probably fewer than half of tick-bitten people exhibit the bulls-eye rash. The ELISA and Western Blot tests give false positives and false negatives at least 30% of the time.
The best method of diagnosing Lyme and associated diseases is by the symptoms (and the ruling out of other possibilities) and going to a Lyme-literate MD.
my father is an entomologist who has worked on lyme. he says that if the tick is removed before 24 hours have passed, there is not time for the tick to transmit the bacterium to you. so if every time you are hiking, walking through tall grass, etc you do a thorough "tick check" that evening, you should be okay. you have to check the scalp carefully - the nymphs are too small to feel through your hair. also, your guest did not mention that nymphs are only out from from roughly mid april to mid july (in this area). after that there are only adults, which are much bigger and easier to find. i pull ticks off all the time - at least four in the last month, but i have never gotten sick using the 24-hour check rule.
Will this be available on Podcast for people to access on the web who could not listen at noon today?
Than you,
Jill
Re #38 -- you can get Lyme any day of the year -- especially with warmer winters. Patients were most likely to have illness onset in May (7%), June (25%), July (29%), or August (13%); fewer than 8% were reported with illness onset during the period December--March.
BUt you can get it then, and a warming climate increases the incidence.
As well, checking everyday is great -- but are you sure it has been there only less than 24 hours? Having had Lyme -- I would not want to guess incorrectly. A complete shower after hiking or gardening, checking in crevices, under arms, skin folds, and really scrubbing your hair after gardening or hiking is helpful but not fool proof. Nymphs are extremely small and they cling.
They also can be found in the city -- since they piggyback on pets and people and land in NYC parks.
Excellent show today, Mr. Lopate. Endless cheers for Pamela Weintraub for unmasking the "obfuscation" of the medical/insurance communities.
I was tested 4 times by regular MDs 9 years ago and came out negative. I got sicker and sicker. Got rebitten in 2005 and was bed-ridden; went to a doctor in NYC who tested me and found I was positive for Lyme and two co-infections: Babesiosis and Bartonella. I am on my third year of treatment, but I can walk, talk and care for my kids -- three years ago, I couldn't.
It was so important that Pamela mentioned the co-infections, since treatment for them is different than for Lyme. Non-Lyme-literate-doctors tend not to test for the co-infections.
This is a modern Bubonic Plague. Nature is feeling less idyllic and pastoral. The deer population is overrun and out of control. Read that in the Lyme area in CT there are 60 deer per square mile when a count of 10 used to be the norm. White-footed mouse and birds also carry ticks. Can't help but wonder about racoons and groundhogs that live in my backyard...
Yes, lyme is found in placenta's meaning it an be transmitted from mother to baby and that is a fact.
Nymphs are not the only culprits so # 38 you and your dad are wrong- the ignorance I read here is insane.
But I also feel for the sufferers being I too am one- with late diagnosis- and incorrect or inaccurate treatment being it is obvious I am carrying co-infections.
Pams book was much more informative than her interview. The IDSA is the problem, always has been- and have received tons of money and for research, producing nothing. The equivalant to American Genocide. The truth will eventually come out, but if you don't fully understand the disease, don't post nonsense that you may have stumbled upon online. Read her book- she worked hard on it and the facts are there. The book is not her opinion, she worked years on it-interviews and all. Read,learn and understand all the facts- she did her homework. Thank you Pam - I knew a lot and learned even more of the questions and answers that were somewhat distorted- It's an infectious disease that cannot be fully cured with a can of soda. Can TB, Syphilis, or HIV? No!
re writer #40: it is true, you can get lyme any time of year. what i meant was that the highest risk is during nymph season, because they are so much harder to notice. here is a reference illustrating the 2 year life cycle of the deer tick, where you can see that you can get lyme disease from an adult in the fall winter or spring, but you are only likely to be bitten by a nymph in the spring or summer. http://www.health.state.mn.us/divs/idepc/dtopics/tickborne/twoyrcycle.html
if you do a tick check so that you are sure you have examined every inch of skin, it is a very good method to substantially reduce your risk of lyme disease. a shower is not enough, you need a second person to check you from head to toe, and for the hair you need them to go over it with a comb inch by inch so you can do a visual check of the entire scalp. the second line of defense is to get a lyme test and/or antibiotics if you have any flu-like symptoms outside of flu season.
what would be most effective in reducing the incidence of lyme disease in areas like westchester would be to kill about 90% of the deer. without natural predators the populations have skyrocketed, harming people and ecosystems alike.
If you have the slightest suspicion that you might have Lyme or an associated disease, GET THIS BOOK. Not only is it an indictment of the medical establishment and IDSA in particular, it gives a complete history of the diseases's origins, the medical and scientific communities' effective and inept responses, an explanation of the scientific conflicts, an expose of the narcissistic personalities, case histories, applauds the heroes and offers pathways to better health, if not an actual cure. Buy multiple copies and send them to the skeptics and ignorant in the medical community.
I was quite disappointed when your guest responded to a question of a worst case senario of infection with narrow reference to her sons particular battle. In the 2 1/2 years that I have been correctly diagnosed with Lyme and co-infections and subsequently became aware of the epidemic, (actually sick and misdiagnosed for 6 yrs) I have heard of many who have died. Tragically, in 2008 so far in my area (NY/NJ), a teenager and an adult passed away -and I'm sure there are others that I'm not aware of and that don't come to light. Not to mention the poor souls who couldn't take it anymore and choose suicide (one high profile example is the gentlemen that was once a member of Bruce Springsteen's band). So, although a diagnosis (when and IF it's finally given) is not considered fatal, dont be fooled...death may occur. But for the other hundreds of thousands of us (worldwide), we just suffer, in varying degrees and in relative obsurity, waiting for our governments and mainstream medical communities to wake up and start caring and doing something about it.
Leonard L.
Thanks for the interest in this topic. Very little seems to have changed since the mid-1980's. I've been treated for Lyme four times. Luckily my father was a physician so I knew to seek treatment early and watch for symptoms.
Since CT is where Lyme was first "discovered" and the whole state is the epicenter of the disease in the US, isn't there any major research effort at Yale-New Haven, Hartford, or Danbury hospitals?
-o0o-
I was told three times by a doctor that I did not have Lyme disease, although my skin exhibited the classic bullseye and I had been hiking a few weeks prior in an area known to have a prevalence of Lyme. The doctor refused to consider that that was what I had, though I had other symptoms as well. It was not until I switched doctors and continued to advocate for myself that it was correctly diagnosed.
Also, for people suffering with residual symptoms, you might want to look into a very helpful herb called teasel to treat those.
I was diagnosed with possible Lyme disease or MRSA in July 2007 at a community hospital in Western NJ. When I returned to NYC I was referred to the Infectious Disease Dept. at North Shore University Hospital where the diagnosis of Lyme was confirmed and I was on doxycycline for several weeks. There aren't any residual effects remaining.
I have had chronic lyme disease for 20 years, undiagnosed for many of those years. I am currently wheelchair bound.
Thank you for having Ms. Weintraub on to discuss the bald-faced ignorance of the medical community when it comes to the prevalence of this disease.
I was bit in June of 1976 and I was 8 months pregnant, got the bullseye rash. I was told I had Hormonal psorhiasis. A few weeks later I was deathly ill and had been sick off and on till last year when I finally gone diagnosed with Lyme and babesia and am still being treated. I had to go to NY to get treatment. I am a Nurse and it infuriates me when doctors ignore patients symptoms.
If you want weekly Lyme disease info, tune into In Short Order at www.contacttalkradio.com
i have chronic lyme i have had it since i was a little girl going on vacations in WI on 120 acres filled with deer and tons of ticks..i was not ,however dxd until 1989..I do know that as soon as the infected tick has bitten you.. YOU ARE INFECTED....
Yes ..early diagnosis is helpful.. but for the poor souls that have to wait. it is mos and yrs of suffering..
oh .. and yes you can give it person to person.i know quite a few people that has givn it to their spouse sexually..
And yes there are many many people that are dying from this disease.. old ..middle aged and young..and there IS NO CURE..impossible to eradicate ALL the spirochetes..
As a physician with experience treating Lyme disease patients, I didn't like the interview by Mr.Lopate --- asking what were made to seem like questions, but with the conclusions or inferences set by Mr. Lopate. Not a skilled interviewer! It seemed as though Ms. Weintraub had to repeatedly counter the "questions" by Mr. Lopate, while he was acting as though he is the knowledgeable sophisticate. Ms. Weintraub has very important information to provide. As a listener, I was left with the feeling that Mr. Lopate trivilialized Ms. Weintraub's work and her message. What a shame.
Can anyone recommend a few specialists in Central/Northern New Jersey? My husband has a very bad case of Lyme disease and is not getting proper treatment.
Thank you for any help you can offer.
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