Ticked Off

A look inside the complicated politics of Lyme disease.

By Tara Murtha
Add Comment Add Comment | Comments: 60 | Posted Jun. 18, 2008

Share this Story:

If only. Truth is, cities like Philadelphia, cities with neighborhoods bordering on woods and parks, are ideal habitats for deer ticks. And here's something else to think about: Infection rates peak in June and July when ticks are in the very hungry and teeny-tiny nymph stage, smaller than a poppy seed.

The Centers for Disease Control and Prevention (CDC) reports that in the Northeast, approximately 50 percent of ticks carry Lyme disease.

In 2006 the CDC reported that Pennsylvania had the second highest number of reported cases in the country, with people 5 to 9 and 50 to 59 years old infected most frequently.

The number of reported cases across the nation each year has increased 40-fold since the CDC began keeping track in 1982. The CDC estimates real figures are seven to 12 times higher.


Back in the emergency room I was propped up Indian-style in a bed. My excruciating headache was temporarily at bay, thanks to a shot of morphine administered after I blacked out.

It was a relief to breathe again and to realize I wasn't dead. But there was still a golf ball-sized lump lodged in my temple, and I knew the morphine- induced calm was temporary.

I was wheeled out for a CT scan, then for a second one, this time facedown, before being stranded in the hallway on a gurney.

A while later a cocksure doctor strolled in clutching pamphlets on how to stop grinding your teeth. He told me he didn't see anything wrong and that maybe I needed a mouth guard for sleeping.

I don't grind my teeth. I invited him to inspect my un-ground teeth. Appealing to his sense of logic, I asked him why, if I did grind my teeth, would an itchy lump suddenly spring out of my head? Why would my whole body shake?

Jesse, meanwhile, was begging the doctor to run more tests. He kept asking the doctor what he should do back home in two hours when the morphine stopped working. The doctor then ripped me a script for Percocet and sent me home.

I requested another morphine shot for the road, but the doctor wouldn't listen. In his eyes I wasn't capable of testifying on my own behalf.

Despite being so obviously sick, I was turned away. Chided, almost. And practically everyone I know with Lyme disease has a similar story. And here I'd been toiling through a stupid day job just for the health insurance.

I floated through the car ride home, curled up in bed and waited for that one precious, luscious, beautiful shot of mercy to wear off.


Welcome to the twisted, murky underbelly of the Lyme disease wars.

Lyme, the most politicized and contested disease since the emergence of AIDS, is also the fastest-growing infectious illness since AIDS.

The medical establishment debates over almost every aspect of Lyme: the definition, who has it, the odds of catching it, the range of symptoms, its origin and most important, whether it's a chronic condition that persists after 10 to 28 days of antibiotic treatment.

Of course wars rage on two levels: There are white-haired dudes pushing paperwork in offices, and there are the people in the trenches who deal with the fallout.

On high, the Lyme controversy is epitomized by the bitter battle between Infectious Diseases Society of America (IDSA) and the International Lyme and Associated Diseases Society (ILADS).

Prev| Page: 1 2 3 4 5 6 7 8 |Next
Add to favoritesAdd to Favorites PrintPrint Send to friendSend to Friend

COMMENTS

Comments 1 - 60 of 60
Report Violation

1. Raven said... on Jun 17, 2008 at 09:35PM

“Tara, Thanks for the enlightening, and sobering, article. (Entertaining, too, I might add). But I'm sorry you've been through so much! I too, suffer from chronic Lyme disease, and while I didn't endure some of the harsh symptoms you had, I know what it's like to go through the hell of chronic illness and to not get help until your body and life are totally devastated. Thank you for bringing awareness to the world about this epidemic illness! I, too, am trying to do the same. Best regards, Connie Strasheim Author, "The Lyme Disease Survival Guide: Physical, Lifestyle and Emotional Strategies for Healing." http://www.lymebytes.blogspot.com”

Report Violation

2. Connie Strasheim said... on Jun 17, 2008 at 10:35PM

“Tara, Thanks for the enlightening, and sobering, article. (Entertaining, too, I might add). But I'm sorry you've been through so much! I too, suffer from chronic Lyme disease, and while I didn't endure some of the harsh symptoms you had, I know what it's like to go through the hell of chronic illness and to not get help until your body and life are totally devastated. Thank you for bringing awareness to the world about this epidemic illness! I, too, am trying to do the same. Best regards, Connie Strasheim Author, "The Lyme Disease Survival Guide: Physical, Lifestyle and Emotional Strategies for Healing." http://www.lymebytes.blogspot.com ”

Report Violation

3. Jess said... on Jun 18, 2008 at 12:00AM

“Thank you so much for speaking out about Lyme disease, bringing awareness to the issue, and most of all--for "telling it like it is," Although the disease itself is becoming more and more prevalent every year, the media coverage seems to remain nearly silent, so thank you Philadelphia Weekly for realizing that Lyme disease is an important issue, and for having this wonderful article. I hope to see follow-ups in the months and years ahead. ”

Report Violation

4. rlcorn64jh said... on Jun 18, 2008 at 07:07AM

“I already emailed Tara to thank you for the great article (s) but just wanted to leave a comment here. I have had symptoms of Lyme disease practically all my life but didn't get a diagnosis until I was 33 when it turned intofull blown neurolyme. Had it not been for the proper treatment from a great ILADs doc I am positive would be dead or in a nursing home. I am one of the lucky ones who have been able to get proper treatment, and it's still a struggle everyday. People are losing their livelihoods, relationships, and even their homes because of this illness. It is unbelievable how difficult it is to get proper treatment and even have most doctors believe you are really ill! So, thanks PW for helping to raise awareness about this ongoing epidemic Abby”

Report Violation

5. carmela said... on Jun 18, 2008 at 08:07AM

“I already emailed Tara to thank you for the great article (s) but just wanted to leave a comment here. I have had symptoms of Lyme disease practically all my life but didn't get a diagnosis until I was 33 when it turned intofull blown neurolyme. Had it not been for the proper treatment from a great ILADs doc I am positive would be dead or in a nursing home. I am one of the lucky ones who have been able to get proper treatment, and it's still a struggle everyday. People are losing their livelihoods, relationships, and even their homes because of this illness. It is unbelievable how difficult it is to get proper treatment and even have most doctors believe you are really ill! So, thanks PW for helping to raise awareness about this ongoing epidemic Abby ”

Report Violation

6. Jess said... on Jun 18, 2008 at 08:24AM

“This article is alarming! I applaud Tara Murtha for her transparent truth-telling. Way to blow that whistle! The Weekly just is in good form with articles like this one. John Francis”

Report Violation

7. marc said... on Jun 18, 2008 at 09:20AM

“This is a terrific story, and unlike so many other media reports, gets it right! Thanks so much to the writer for doing the story and to the publisher for printing it. This is a helpful public health piece. Lyme is a disease that is usually cured in people who are caught at the early stage and treated adequately. Too often cases are not caught early, or treated adequately, or never diagnosed at all. Lives, jobs, marriages, careers, finances have been wrecked in those who were not caught early.”

Report Violation

8. John Francis said... on Jun 18, 2008 at 09:24AM

“This article is alarming! I applaud Tara Murtha for her transparent truth-telling. Way to blow that whistle! The Weekly just is in good form with articles like this one. John Francis ”

Report Violation

9. Jen in South Jersey said... on Jun 18, 2008 at 10:22AM

“Tara, Thank you so much for your informative article! I applaud your outspoken and blunt perspective!!! I too have been affected by Lyme Disease, but I have not been the one suffering, my husband has. He has had Chronic Lyme for 4 years and it has not only afftected him, but my daughter and I. Watching him suffer with either headaches, extreme exhaustion, joint pain, weakness (and various other physical ailments!) but mostly with depression has been heartbreaking. I would love to have my husband back, but I realize that it may never happen. He used to have so much lust for life and now is too exhausted after a days work to do much of anything. Luckily, he is being treated by an ILAD doctor, but even the use of constant antibiotics seem to take a toll on him, mostly his stomach. This battle has not only affected all of us emotionally, but also financially. Alot of the pro-biotics are not covered by insurance and the doctor himself is not covered. We have spent so much money on this disease and what a joke that we actually carry a good health insurance policy!!! I pray that people will research more, speak out more and understand more about this disease and all the co-infections that accompany it. Maybe one day so many people will not have to suffer!”

Report Violation

10. Toni Renner said... on Jun 18, 2008 at 10:39AM

“I never thought I'd feel lucky after contracting a life-threatening disease but after reading this article I feel really, really lucky. I noticed a tick on myself a few months ago. After I got a rash at the bite site I started a three week course of antibiotics. The only other symtom that I've had was a strange intense two-day flu while I was still on the antibiotics. I feel like I really dodged a major bullet.”

Report Violation

11. ajl777 said... on Jun 18, 2008 at 02:00PM

“Thank you thank you for bringing attention to this story. Please keep up the attention on this issue. I have suffered from chronic Lyme for many, many years now and I can't believe doctors are STILL saying that there is no such thing. There oh so clearly is. With me, the infection is obvious, every time I start antibiotics, my knee swells up, and every time they tap into the knee and drain it, they can find spirochetal DNA by PCR and they can culture live spirochetes. Now, if that doesn't qualifiy for a persisting infection, I don't know what does. And no, I am not getting reinfected. Since getting sick, I live in the city, never go near grass, and this knee phenomenon has happened in the dead of winter. It's time for the Lyme denial to stop, and for these doctors to just admit that chronic Lyme exists, and what doesn't exist is the cure. We'd all be better off. Thank you thank you Philadelphia Weekly.”

Report Violation

12. Finette Russak said... on Jun 18, 2008 at 04:27PM

“Great Job Tara!!!! and nice of Ms Connie to jump on the chance to promote HER book--NOT dont bother with it or any of Biomed Publishing's writings---instead run dont walk to get Pam Weintraub's Cure Unknown--a very detailed review of what was, is and what may yet be in Lymeworld that we all need to read!!! as for killing all the deer---unfortunately that will just have the hungry ticks hopping into humans all the more--problem isnt the deer so much as encroaching development and houses into the forests giving the ticks an easier meal--US spread the word--Lyme is growing and is dangerous for many---and read Pam's book. Heck buy a few and GIVE them to Drs and legislators---maybe we can through education and advocacy save others' lives from this dreaded disease Finette Lerman-Russak, M.S. Lyme advocate over 15 yrs Lyme and Bartonella victim over 18 yrs Parent of teen child with Tick Borne Diseases( TBD's)”

Report Violation

13. jewelfish2002 said... on Jun 18, 2008 at 05:34PM

“Tara, Thank you!!! Beautifully written. Philadelphia Physicians (Jefferson, Penn, Temple) can be very ignorant when it comes to Lyme. They have a tendency to throw out diagnoses such as Multiple Sclerosis, Chronic Fatigue and Fibromyalgia. They fear the Lyme diagnosis: receiving criticism and skepticism from their colleagues. If someone had "believed me" and diagnosed me correctly from the start, I may not be as sick as I am today. We must continue to fight this together, and work together as Lyme patients to be a stronger, wiser, and healthier family.”

Report Violation

14. afcmd said... on Jun 18, 2008 at 05:35PM

“Dear Tara, thank you so much for writing this article. I became an ILADS member in 2003 after finally figuring out what was killing my only child. I have devoted my practice to tick borne disease sufferers ever since. The need for all doctors to become "Lyme literate" is an urgent and pressing need. So many people are suffering needlessly because of physician ignorance. I am disgusted at the arrogance and disdain with which seriously ill patients are treated by "physicians" at my alma mater. Keep on writing! Sincerely, Ann F Corson MD University of Pennsylvania School of Medicine class of 1982”

Report Violation

15. Delores Heintz said... on Jun 18, 2008 at 07:30PM

“Dear Tara, Thank you so much for this enlightening while entertaining article. You revealed so many important details about Lyme and the struggle we all endure. Philadelphia Weekly has gone the extra mile in publishing this information. I hope that when you recover, you will remember what it felt like so that you can continue to bring awareness to the many who need help. Normally, it is difficult for me to focus for any length of time but I couldn't turn away from your writing. Thank you once more and good luck with your battle against Lyme. ”

Report Violation

16. Delores Heintz said... on Jun 18, 2008 at 07:34PM

“Dear Toni, With Lyme Disease you need to be vigilant. You may or may not have dodged the bullet. Pay attention to any symptoms that are out of the ordinary for you. ”

Report Violation

17. Thrill said... on Jun 19, 2008 at 01:34AM

“Great piece, T-Murth. Deeply personal without seeming self-indulgent. Kudos. ”

Report Violation

18. habe said... on Jun 19, 2008 at 04:05AM

“Thank you for sharing your personal experience, one which shares the universal truths of diagnosis with your readers. May you use your pen/voice like Pam Weintraub to bring tick borne diseases out of the shadows into the light.”

Report Violation

19. Janice Murphy said... on Jun 19, 2008 at 09:29AM

“Thank you Tara for this truly moving story. I had no idea that living in a city such as Philadelphia could be such a risk for catching Lyme disease. I don't know anyone personally who has the disease as I live in London, England. Lyme disease is now becoming a problem in England as well. There is a hugh and very protected deer population in and around London where there are many large parks that deer roam freely. It will only be a matter of time that it catch's up to the current situation in the States. One wonders how those ticks made the jump across the Atlantic! Wishing you all the best for a full recovery and thank you for the education.”

Report Violation

20. saweetmarie said... on Jun 19, 2008 at 10:26AM

“I understand that you've been through a lot, so it's not unexpected that this is a one-sided point of view on the Lyme disease controversy. But I have seen first hand how quack doctors can screw up small children with unnecessary, long term, high dose antibiotics because of supposed chronic lyme disease. There's no question that Lyme exists. But there are also "lyme literate" doctors who are taking advantage of people. And it is questionable that the myriad of symptoms people experience are actually due to Lyme. I'd just like for your readers to genuinely see both sides of the controversy. Here's a few sources: "Lyme Inc" - fascinating article in Forbes Magazine: http://members.forbes.com/forbes/2007/0312/096.html A Report on the Myths and Realities of Lyme: http://www.quackwatch.com/01QuackeryRelatedTopics/lyme.html ”

Report Violation

21. Nancy said... on Jun 19, 2008 at 10:26AM

“brilliant story thanks for the info and enlightenment”

Report Violation

22. Cass A said... on Jun 19, 2008 at 02:16PM

“Tara-- Thanks so very much for shining light on what has been made difficult to find! Lyme is now the "Great Imposter," with dozens, if not hundreds, of possible symptoms. It is a spirochet, and it's closest genetic relative is syphillis, which was the "Great Imposter" of the 1800s and early 1900s. Then, people would go psychotic or have strange collections of symptoms, without anyone recognizing that they had a bacterial infection! Luckily, syphillis is successfully treated with a short course of antibiotics. Unluckily, Lyme, unless caught within a few days, is not. Personally, it took me 5 years of searching and trying one thing after another before I got a correct diagnosis. I've now been treating it for 4 years.... Please keep writing, and keep getting better!”

Report Violation

23. cantgiveupyet said... on Jun 19, 2008 at 02:55PM

“I just wanted to thank you so much for printing this story on Lyme Disease. I live in the suburbs of Philadelphia and only oneDr I went to see suspected lyme. I cant even recall how many ER visits I made because i felt like i was truly dying. I had just retruned from being deep in the woods in the Pocono mountains, PA when symptoms hit hard and fast. I went on vacation and never ever returned the same as I left. I have lost everything to this disease, my job, my life, some family and almost all friends. I struggle everyday with some aspect of life most days too dibilitated to do much of anything. This struck me 3 months before my 30th birthday in 05. In April of this year I finally tested positive for Lyme Disease and one other coninfection similar to malaria. I will begin treatment shortly and can only hope I will regain more of my life. Kudos also to Daryl Hall who 'gets this disease" he gives me hope that I can recover.”

Report Violation

24. Justine said... on Jun 19, 2008 at 03:42PM

“"Another paper in the Annals of Internal Medicine calls chronic Lyme a "functional somatic syndrome," similar to other nebulous ailments like Gulf War Syndrome, chronic fatigue and fibromyalgia." And if you buy that I have a bridge to sell you! Did you actually read that Forbes article???”

Report Violation

25. scott said... on Jun 19, 2008 at 04:04PM

“ saweetmarie clearly you or someone you love has never dealt with this illness. It's funny how the other side of this controversy is ONLY people who have never had the disease. No one who has had Lyme on a serious level agrees with the IDSA or the idiot from Quackwatch.”

Report Violation

26. scott said... on Jun 19, 2008 at 04:06PM

“thank you so much for speaking truth to so many”

Report Violation

27. chronic lyme in CC said... on Jun 19, 2008 at 08:05PM

“Wow, so many comments already! This shows you both how many people HERE are suffering from this disease and how controversial it is. I was one of the few who DID catch it early, got treated with three weeks of doxycycline...and guess what? I'm still sick, 7 years later. I was tested for everything under the sun, yelled at and harassed by doctors who told me it couldn't possibly be lyme, misdiagnosed with everything from MS to narcolepsy, and the only thing that consistently came back positive was my lyme tests. And the only thing that has helped me through all this has been antibiotics! So cheers to ILADS and to my wonderful LLMD. And boo to those doctors are Penn, Jefferson, Presby, and the now-defunct Graduate Hospital that didn't even think to look for lyme, despite my history.”

Report Violation

28. Camille said... on Jun 19, 2008 at 08:14PM

“Toni, The strange intense 2-day flu while still on antibiotics may have been a "Herxheimer" reaction, caused by die-off of Lyme bacteria. ”

Report Violation

29. Camille said... on Jun 19, 2008 at 08:25PM

“I'm in my 3rd year of Lyme & expenses have topped $10K. Thankfully I don't have much pain; however, the cognitive issues ARE daunting & sometimes dangerous. I hope my LLMD(Lyme-literate-Medical-Doctor) soon discovers the right combo of meds administered for the right length of time to eradicate this disease. But I live in the woods. How soon before I would be re-infected?! A frightful thought. ”

Report Violation

30. TAH, LPC said... on Jun 19, 2008 at 09:19PM

“Another 'thanks!' to add to the pile. Another Lyme suferrer here. Sadly, being in 'the know' has become something of a 'secret society'. Awareness, thank goodness, seems to be spreading. All these questions are unanswered, and will scare the heck out of people: why are couples and entire families being stricken? How exactly, can Lyme be transmitted? Some studies demonstrate that Lyme is being passed through the placenta and through semen. Other studies demonstrate that bird, ticks, mice, rats, flies, mosquito's, etc. can carry Lyme and co-infection. Studies reflect that Lyme is documented in each and every state in the U.S. The scenario is so complex (the politics, the science), revealing that it is not necessarily the 'timeframe' in which one gets treatment, but some combination of the persons immune system, the number of 'co-infections', the strain of borrelia/lyme. There are many stories (like the one above) where folks are getting treated right away with potent combo antibiotics yet chronic infection emerges. What we really need is more attention to this pandemic.. more funding for research and treatment, more education. If not, we risk this morphing into our next 'plague'- akin to the influenza of the early 1900's. Harsh words- harsh reality. Bullseye rashes are likely NOT the telltale sign, another very scary finding, outlined in one study in "Cure Unknown". The authors report that a good portion of tick bullseye rashes do NOT accompany spirochete infestation-- they are just rashes that irritate the skin. !! Crazy, no? This would lead us on the erroneous path that lyme is curable in one month. Truth is, most of those people didn't need to be cured of anything!! Given all these uncertainties, one thing is certain: it is far easier for doctors to ignore, than to start asking the difficult questions. Far easier to refuse to acknowledge, than to admit "We just don't know". Added a bit more to the pot.. Bravo to folks like Tara Murtha., Pam Weintraub., Richard Blumenthal, and the folks of 'Under Our Skin' documentary. Can this continue to be ignored??? The time is NOW... ”

Report Violation

31. KRice said... on Jun 20, 2008 at 07:42AM

“Thank you for taking the time to share so much information about your unfortunate experiences. It's a heartbreaking story, indeed. The service you're providing to those of us who read your article knowing nothing about Lyme Disease is invaluable. As a parent (& a dog owner) I appreciate what it must have taken for you to relive this by telling it all. Stay well, stay strong, and best wishes for you & Jesse on your journey back to wellness.”

Report Violation

32. kg said... on Jun 20, 2008 at 03:29PM

“and this would be why i don't even wish lyme disease upon my worst enemies.”

Report Violation

33. dhsack said... on Jun 20, 2008 at 04:38PM

“Very interesting story told with great skill and insight. I wish for good health for all touched by this disease and hope that additional research will shed light on it's many manifestations.”

Report Violation

34. Laura said... on Jun 20, 2008 at 08:56PM

“Thank you for putting into words exactly how I feel with this disease. And thanks for spreading the word about just how serious this is. - Laura, two weeks into my first month of antibiotics, after 7 months of doctors' guesswork ”

Report Violation

35. angel007 said... on Jun 21, 2008 at 07:53AM

“Well, it took 15 years and the total destruction of my life to finally get to a late-stage Lyme diagnosis and that is only because of the information available now on the internet. Doctors are as misinformed as the public is... Antibiotics do NOT cure Lyme - not early or late stage... We are in a very serious global situation with this man-made bioweapon designed not to be found... it will hit the body where it is most vulnerable - be it central nervouse system/neuropsychiatric, show up as MS, Alzheimer's, ALS, Fibromayalgia, Chronic Fatigue - you name it... But find a doctor who can perform an accurate Lyme test and then treat you? A handful of people will make it through... http://lymefighters.org http://turnthecorner.org http://underourskin.com”

Report Violation

36. LymeLight said... on Jun 21, 2008 at 08:53AM

“Well, it took 15 years and the total destruction of my life to finally get to a late-stage Lyme diagnosis and that is only because of the information available now on the internet. Doctors are as misinformed as the public is... Antibiotics do NOT cure Lyme - not early or late stage... We are in a very serious global situation with this man-made bioweapon designed not to be found... it will hit the body where it is most vulnerable - be it central nervouse system/neuropsychiatric, show up as MS, Alzheimer's, ALS, Fibromayalgia, Chronic Fatigue - you name it... But find a doctor who can perform an accurate Lyme test and then treat you? A handful of people will make it through... http://lymefighters.org http://turnthecorner.org http://underourskin.com ”

Report Violation

37. Jackie Mueller said... on Jun 21, 2008 at 09:25AM

“Tara, Your story made me cry and think about my symptoms with Lyme. I went through so many tests before I was diagnossed with this horrible disease. My sister suffers with Lyme as well. She kept telling me to get tested, but I didn't want to admit the fact that I was scared to know the truth. I didn't go through the symptoms you had, but the memory loss, depression and rage I can relate to. I feel like I was a human pin cushion the three or four times I was admitted to the hospital. At that time they were saying "mini stroke" - I have the numbness in my hands, legs and feet, sometimes only on the left side. IE: the diagnosses of the stroke and/or heart problems. I have a heart murmer, and with the numbness issues I was a good canidate for a heart cath. I had that un-nessasary procedure in 2000. I still have the numbness in my hands, legs and feet and now a regular doctor would diagnoss fibermyalgia or aruthritis. I have the lession in my head too via an MRI. My current lyme doc, says he will have me feeling "back to normal" - what ever that is since I've been sick so long I can't remember those days!! I am so sorry that you are feeling so bad. I hope you find a doctor that will treat the Lyme disease go to the LDA web-site it lists some qualified doctors that will treat the Lyme. You may have to travel a ways to see one of them, the trip is well worth it even with gas prices today. Your health is what is most important. You are lucky that Jesse has been so supportive. Family support and understanding is really the key. Take care and feel better - J M - Dunellen, NJ ”

Report Violation

38. wiserforit said... on Jun 22, 2008 at 06:32AM

“Tara, this is one of the best articles on Lyme that I've read -- and I've read alot! I am on my third year of Lyme treatment. I have the co-infections Bartonella and Babesia as well. I went through a long odyssey of doctors and wasted time before I found a Lyme literate doctor. In my neighborhood it seems that about every other household has either a human or a pet with Lyme. Some are fortunate to have tested positive on the unreliable ELISA tests -- they get early treatment. Others test negative (like I did) and remain ill with a baffling array of symptoms for years. I believe that Lyme Disease is the Bubonic Plague of our times. The statistical numbers released by the CDC cannot show the huge numbers of folks who haven't yet been diagnosed properly. Your article is so significant in getting the story out to the public at large -- it conveys the human element mixed with the daunting politics that keep Lyme sufferers health hostage to a faulty and greedy liason between pride-driven researchers and the insurance industry. -- Blessings.”

Report Violation

39. Jen in South Jersey said... on Jun 22, 2008 at 07:19AM

“This article is so timely! Not only am I currently lying on my couch recovering from lyme disease myself, it's the middle of lyme disease "season" and people need to know as much as they can about it. Fortunately I had a doctor who got right down to business and perscribe the antibiotics immediately. I'm not sure what the long term affects will be just yet, although I know the first 6 days were hell. The crazy part is that you can definitely pick up lyme disease here in Philly if you go walking in the Wissahicken or Fairmount - both places have deer populations. Number one piece of advice I'd give anyone who is going to venture into the great outdoors during the summer is to spray your legs (skin) and pant legs with deet. It will kill any ticks that attach themselves before they have a chance to bite you.”

Report Violation

40. Jennie said... on Jun 22, 2008 at 08:19AM

“This article is so timely! Not only am I currently lying on my couch recovering from lyme disease myself, it's the middle of lyme disease "season" and people need to know as much as they can about it. Fortunately I had a doctor who got right down to business and perscribe the antibiotics immediately. I'm not sure what the long term affects will be just yet, although I know the first 6 days were hell. The crazy part is that you can definitely pick up lyme disease here in Philly if you go walking in the Wissahicken or Fairmount - both places have deer populations. Number one piece of advice I'd give anyone who is going to venture into the great outdoors during the summer is to spray your legs (skin) and pant legs with deet. It will kill any ticks that attach themselves before they have a chance to bite you. ”

Report Violation

41. rlcorn64jh said... on Jun 22, 2008 at 09:10AM

“Congratulations to you and PW for this excellent article! In CT tick-borne diseases are so prevalent that the schools are teaching about them in Health class. Not always because it is the sensible, humane thing to do. School districts are afraid of being sued for negligence if they don't take some kind of preventive action. Schools and municipal property are being sprayed for ticks as a preventative measure. These diseases will get more attention once the lawyers begin to file suits for damages. From a legal point of view, consider this. Suppose you are a school superintendent and know that there are deer around your school property, and you know that ticks surround your schools but you do nothing. Your teachers have had no in-service training about tick-borne disease problems or symptoms. Let's say because of internal politics, "budget constraints", or inertia, you don't warn parents or pupils about the dangers of getting a tick-borne disease while under the supervision of educational professionals in the schools. Further, let's say there are no signs on school property anywhere warning about ticks, and the idea of informing parents to do a "tick check" after a field trip escapes supervisors. Your field trip release forms say nothing about ticks. Now, I'm the lawyer for the child who developed a serious physical and medical problems like Tara described above resulting from of a tick-borne disease that I suggest was contracted while the child was under the care of the school district. We go to trial. I put you the superintendent of schools on the witness stand and ask you to confirm all of the above facts. You knew all this and did what? Nothing? Would you have any defense available to you at all? How large a judgment would you imagine we are considering? Please continue to keep us informed. ”

Report Violation

42. pam3001 said... on Jun 22, 2008 at 05:24PM

“Congratulations to Tara for a stylish, important and especially transparent piece of first person journalism. To the individual who mentioned the Forbes story as a counterpoint, these works are not remotely on the same professional plane -- clearly you never attended journalism school. The latter story twists nuance so it is inaccurate in many places, obfuscates the real debates in science, and, especially, suffers lack of transparency. Given the terrible problem we have here, given the human suffering and very real controversies and unknowns, I am so disappointed in professionals who point to that story as their facile answer to an epidemic instead of engaging in a serious discussion based on actual science from our top researchers at UC Davis, Stony Brook, and elsewhere. Pamela Weintraub Cure Unknown http://www,cureunknown.com/ ”

Report Violation

43. Theresa said... on Jun 22, 2008 at 08:45PM

“THIS ARTICLE IS AWESOME!!!! Thanks for your openness personally, and doing the hard research do paint an accurate pic. I really, really hope for your full recovery. I've had Lyme now for almost 7 years. While Antibiotics have hugely increased the quality of my life by relieving symptoms, every time I have attempted to get off of them completely, the symptoms came roaring back. Very frustrating. What's really fucking frustrating?? That we are not given the personal CHOICE to look at our choices, and opt for ongoing treatment if that is the route we want to take. Cancer patients get this option freely. Because this disease is being so suppressed and micromanaged by the IDSA, that right is removed for us. Thank God I live in California, where our docs are protected by their persecution! I would be a goner if not for that.”

Report Violation

44. angel007 said... on Jun 25, 2008 at 12:52PM

“I worked at a residential facility for teens in rural, central Jersey where 20% of the kids were positive for tick borne diseases, especially Lyme at any one time. That was over 11 years ago and I contracted Lyme there and it wasn't diagnosed immediately after infection. Ended up on disability for a couple of months, later on. One day with an IV (Rocephin, 4 weeks, once a day, later bumped up another 4 weeks) for daily antibiotic infusions in my arm I sat down to review a couple of the resident's files in big loose leaf binders. I thought that I was having issues with my reading comprehension when the periods weren't where I thought they should be, I thought it was a symptom of Lyme. Turned out it was a tick, the nymph crawling around on the page stopping now and then impersonating punctuation. The thing probably fell off another staff member (after an outside hike) into the binder and was closed up to be later opened by me. That's how people who never go into the wilderness can contract the disease. Think of all the outdoors people checking out books in the library only to have ticks fall between the pages, never to be crushed since they can press them selves flat. I also sat in on a briefing at the Wistar Institute years ago about rabies and disease vectors in Philadelphia. I remember that there were questions about Lyme and the Doc talked about not just deer but the white-footed mouse as a vector that helped ticks remain in an area. I think of deer as the mass transit system for ticks and the white-footed mouse as the tick condo. Just offing deer won't be enough, we should get rid of the field mouse and spray library books with "tickacides" or ban books......whatever is more effective. Book banning probably wouldn't fly but I can understand Daryl Hall's call to arms. mmmm...venison.”

Report Violation

45. fightinglymesince93 said... on Jul 4, 2008 at 05:33PM

“Thank you very much for this story, it's very accurate, and speaks the heart of what most of us Lymies suffer on a daily basis. I am in a similar situation, stuck in a wheelchair now because I haven't recieved the treatment I should be recieving. I thank you again for getting this out there so people can see, this is the A.I.D.s epidemic of this generation.”

Report Violation

46. 3pat3 said... on Jul 5, 2008 at 10:48PM

“Thank you for this article and please keep speaking about lyme so people become more aware about how easy it is to get lyme and how difficult it can be to irradicate it, and how it can practically ruin your life. -pat”

Report Violation

47. Jane said... on Jul 7, 2008 at 02:34PM

“Good article. Here in Wisconsin we haven't had much media coverage of Lymes but we have had a lot of case of Chronic wasting disease which passes to human who consme deer meat. Deer hunting and eating is a big part of the economy here. Whole towns have been uaranteed from hunting but it still goes on. Yes we do have cases of Lymes but it seems like even the deer's form of mad cow won't stop this population. A lot of deer meat is given to food pantries, I just feel it's WI way to take care of the poor.”

Report Violation

48. john said... on Jul 7, 2008 at 04:59PM

“My daughter is 19 years old & just completed her 1st year @ Temple when she was diagnosed w/ Lyme last March. She has been severely affected, w/ Rheumetoid Arthritis and chronic fatigue. She's on Plaquinel, Celebrex, & others. Our Pharmacist, @ CVS - Media, says Lyme is the number one diagnosed disease accounting for the most TRx volume flowing thru her Pharmacy. Why on Earth isn't this getting more media exposure? There were Lyme Disease vaccines around a few years ago. The article didn't say whatever happened to them. One would think there would be more interest now.”

Report Violation

49. Becky said... on Jul 19, 2008 at 08:46AM

“Thank you for this article. I was alerted to it after talking with friends about my symptoms. I was diagnosed with Lyme disease when I was 9 years old (over 20 years ago), when it was "new". Of course, before the correct diagnosis and treatment, I had to go through several tests and was misdiagnosed with arthritis and polio. It had affected my joints and made me unable to move for several months. After a round of antibiotics, I seemed to get back to normal pretty quickly. However, in the past 6 or 7 years, I have been experiencing joint pain, numbness and having back problems that someone my age shouldn't have. I have tried to talk to my doctors about the possibility of Lyme causing these problems and have only been brushed off. No doctors will even discuss it with me. I have been through many tests and physical therapy and the doctors only tell me that I have a problem with the cartilage in my joints - that it is disintegrating, but they don't know why. It doesn't make sense that no one would consider Lyme disease being part of my problem since it affected my joints so badly as a child. I also don't understand why they spend so much time and money testing me for things I know I don't have. I don't know how many times I've had to tell a doctor that I don't have a sports-related injury. As my ability to do anything physical has severely declined, the more desperate I am to get help. Thanks to this article, I am going to be more persistent in getting answers and trying to get help.”

Report Violation

50. bleuskies said... on Jul 22, 2008 at 12:03PM

“saweetmaire- your coment "I'd just like for your readers to genuinely see both sides of the controversy. Here's a few sources: "Lyme Inc" - fascinating article in Forbes Magazine: http://members.forbes.com/forbes/2007/0312/096.... A Report on the Myths and Realities of Lyme: http://www.quackwatch.com/01QuackeryRelatedTopi... reply is absolutly not genuine- it's completly oneside and a lot of pertinent information is missing from those onesided articles.- This is half the problem- the press ALWAYS says what little they know - Read cure unknown to get the real story before spouting crap from forbs and quako doctors- you obviously hav't been mis-dignosed wirh one of wormsers and steeres rediculous syndromes -”

Report Violation

51. Julie Green said... on Aug 26, 2008 at 05:59AM

“Tara- Just wanted to let you know how valuable your article has been to help educate your generation to the frustration many encounter as victims of this nasty disease. I have sent your article to numerous friends for their children who are newly infected. Being so sick and having to deal with the inadequate medical community is close to inhumane. Please provide an update on your situation and , if possible, keep advocating in the hopes of preventing future cases and making the case for change in our traditional medical establishment. Proud of your contribution! - Sara's mom ”

Report Violation

52. Raven said... on Nov 21, 2008 at 07:32PM

“Lyme and tick borne infections are not alone in making us miserable. In June of '02 I became very ill---fever, stiff neck, eye problems, neurological symptoms, tinnitus, head pain. Severe fatigue followed. MRI found an area of inflammation on the Pons area of the brain. Three years went by while I struggled with these symptoms. I live in Calif and can't recall a tick bite but it is possible. Actually, the worst symptoms began after a spider bite. Docs thought it was everything from FM, CFS or MS to a blood flow problem (stroke). After much searching I found information on the net about Chlamydia Pneumoniae--an obligate intracellular parasite. Cpn has a 3 stage life cycle and cannot be killed by short single doses of antibiotics. Sound like lyme? Indeed, I have just completed three years of combined antibiotics. I am much better but not done yet. I was seriously infected. The Cpn infection also opened the door for Mycoplasma Pneumoniae and some serious viral infections such as Epstein Barr virus and Human Herpes Virus 6. I am lucky I found a doctor who knows so much about treating these. But they are formidable enemies. I am convinced that adding Lyme on top of these infections would send anyone over the edge. The point I wanted to make was that there are multiple chronic infections out there that are flying beneath the radar of the medical community. For more information on Cpn, go to: http://www.cpnhelp.org Many members also have Lyme and other infections. Be sure to read the patient stories. Raven”

Report Violation

53. john said... on Dec 25, 2008 at 10:12PM

“this is the next and current aids epidemic sadly the govermebt is still in denial but our president g w bush has lyme himself what gives ??? ”

Report Violation

54. samule said... on Dec 25, 2008 at 10:29PM

“Lyme Disease is a True Epidemic World Wide and it is so horrible.... People are genuinely suffering and the Medical Community is in Denial. Lyme leads to most other Chronic Illnesses and People are Truly Suffering and Going Broke trying to treat themselves and finding under the counter cures. Lyme is the most Misdiagnosed Disease. This in it self is truly Wrong and the CDC are the one responsible for this. ”

Report Violation

55. ghherink said... on Dec 25, 2008 at 10:38PM

“Many studies show that people with Cancer today suffer far less than people with Lyme & CoInfections. In fact Lyme leads to majority of Cancers and Diseases as we know them today. Lyme Disease is REAL and CDC is not addressing the problem properly neither are the Hospitals or the Primary Care Physicians. And the basic mandated 3 week Antibiotic treatments in most cases either do nothing or make the symptoms even far worse for the Individual... Dr. Herenckinson M.D. PHD ”

Report Violation

56. ghherink said... on Dec 25, 2008 at 10:43PM

“lyme can be passed through a tick bite, a dust mite, a spider bite, a mosquito, any animal, and even human to human body fluids. ”

Report Violation

57. Jeff Daniels said... on Jun 30, 2010 at 10:26AM

“You can actually donate plasma if you are diagnosed with diseases like Lyme Disease to help with this difficult research. The Plasma is used to develop diagnostic tests, and you are paid anywhere from $200 to $1000 every time you donate. Several options are below.

http://www.idonateplasma.com

https://twitter.com/IDonatePlasma

http://www.myspace.com/seracare

http://www.linkedin.com/pub/i-donate-plasma-for-research/21/b09/726”

Report Violation

58. Becca said... on Jul 23, 2010 at 06:11PM

“I wish someone would re-run this most excellent article on Lyme and I wish it would be ran in every newspaper across the country. This tells the story of how Lyme does not discriminate and how it is all around us. We continue to be ignored. I cannot get a simple bottle of Doxy that runs $2.50 at Wal-Mart because of the ignorance of doctors in Pennsylvania! I am from Darryl Hall's hometown and I contracted Lyme here in the center of town. I was only 13-years-old. It wasn't until I was 35 that i was diagnosed despite all of the doctors I have been to. Not one time did they mention Lyme to me. Lyme testing should be given annually in Pennsylvania to every single resident. It could save lives!! The politicians need to get their head out of this asses and pass senate bill 1199. It's a start in the right direction! Thank you Tara for writing this article and sharing your experience. I am sorry Lyme has dismantled your life and anyone elses life for that matter.”

Report Violation

59. Elaine said... on Oct 20, 2010 at 10:27AM

“The ignorance needs to end! I had to travel many miles away from home to get treatment. So very costly.... just cashed out my retirement to go on another round of IV antibiotics. Second round since 2002. Many insurance companies won't pay for extended IV drugs or Lyme specialists. Where is the publicity for this disease or at least some telethons ? If I did not have young children, I would be camping out in front of wherever medical boards convene with a big sign reading; LEAVE MY LYME SPECIALIST ALONE !! Almost all Lyme specialists have been harrassed by medical boards. My doctor had to declare bankruptcy from defending himself in court and my son's doctor just retired because he was sick of fighting with the medical boards. It is truly scary that these are the people that take an oath to do no harm to us. Doing nothing is doing harm !”

Report Violation

60. Mike said... on Mar 26, 2012 at 08:48PM

“Please think about printing this article again. The Lyme situation is just getting worse and the IDSA is NOT helping. As a matter of fact they hurt. ILADS i sworking hard to get attention to this terrible disease, but it is an uphill battle that still has not received the attention it needs.”

ADD COMMENT

Rate:
(HTML and URLs prohibited)