Chronic Lyme disease argument simmers among doctors, patients

Karen Hartenstine was describing the job she'd done before going on medical leave several weeks earlier.

[Jennifer Dodge]

God Bless all of you with the HORRIBLE disease! This includes my Aunt Karen mentioned in the above story. I have seen how this has affected her, but she has the greatest faith & strenght, and I believe in the near future, she is going to start having more "better" days than bad days. I can't imagine going through this, but it goes to show what great strengh you all have, to have to fight this battle. God Bless you all!

[Sam]

Good story. Maybe the lyme deniers will explain why treatment improves these people and lack of treatment does not. And all the other diagnoses they pin on chronic cases typically do not have any effective treatment. So when that Johns Hopkins guy, denier-in-chief for that institution, says these people are not getting treatment for the disease they actually have......well, what effective treatment is there for M.S., fibromyalgia, chronic fatigue, etc? What they do is refuse treatment for lyme, pin another diagnosis on these people, and then condemn them to a life of suffering. No wonder there are lyme suicides. Thanks Johns Hopkins. How did they ever get a good reputation with people like this in important positions on their staff?

[CTPatriot]

What is it with journalists today? Do they not have the time to do even the tiniest bit of independent research in order to ferret out the facts?

The author of this article makes the common mistake of describing the controversy as one between patients and scientists. This false depiction only serves to sustain the misimpression that chronic Lyme disease is the invention of hypochondriacal patients rather than a diagnosis supported by doctors and scientists.

It is important to recognize that there is ample scientific as well as anecdotal evidence to support the existence of chronic Lyme disease as a persistent infection. The doctors who BELIEVE that those patients suffer from chronic Lyme disease are not simply inventing something out of thin air. And patients are certainly not inventing the diagnosis. The IDSA and ALDF would like for you to convey that impression, of course, and so would the insurance companies.

The truth is out there for journalists willing to seek it. For the rest, I guess it's just easier to call a designated "expert" and then write up a he-said, she-said article that obviates the need for an author to determine what the actual truth is.

One has to wonder why no opposing experts, such as the many fine doctors and scientists affiliated with IDSA's opposition, ILADS, were not consulted for this article. Instead we're treated to the brilliant IDSA propagandist Dr. Auerwater and his political statements masquerading as scientific opinion. Maybe if he spent more time in his lab doing research and less time running his mouth, we might have solved this mystery by now.

[ticked off patient]

Dr. Paul Auwaerter, clinical director for infectious diseases at Johns Hopkins University Hospital,
"Yes, Lyme disease is on the rise, Auwaerter said. He's even come to believe that a very small number of people who have it may not respond to the standard two-to-four-week course of antibiotics, though he still believes that a long-term course will do nothing for them."
"I think the criteria is a bit too loose by these doctors who consider themselves Lyme specialists," Auwaerter said.

How dare he maline his colleges and question the paitients diagnoese these are not his patients.

Code of Ethics quote
"IV. A physician shall respect the rights of patients, colleagues, and other health professionals, and shall safeguard patient confidences and privacy within the constraints of the law."

I think time is coming, these comments must be taken to court. He is breaking a law.

[Stir Greer]

I would have liked to see this article include at least a mention that Lyme Disease is only one of several vector borne diseases carried by ticks, and that individuals could have Lyme plus another (one or two or more) TBDs, or could have another (one or two or more) TBDs and not have Lyme.(eg, Bartonella henselae, Babesia microti, etc)

Did I miss the studies supporting the theory that "standard two-to-four week course" of antibiotic therapy will "cure" Lyme Disease.??

Of course everyone wants to be diagnosed correctly - but given my own experiences, I believe it is more likely that someone will be denied proper TBD treatment (due to lack of proper diagnosis).

[Mary Jane]

The majority of the mainstream medical community will never hear the truth by the Lyme Community so long as they're owned by the insurance and pharmaceutical companies.

[Denise in UK]

All those doctors like Auwaerter, and the dozen or so who have published in the prestigious journals about Lyme being easy to cure and short-lasting - I ask myself how do they sleep at night?

They are ignoring the overwhelming scientific and medical evidence of persistent infection. Some of them quite openly stated that there was persistent infection in their earlier papers in the 1980 and 1990s.

What's made them change their minds now?

They have somehow overlooked all the global research stating that the Lyme spirochetes are very similar in many ways to Syphilis, hiding in the body and needing sometimes years of treatment? And somehow forgotten their own published papers. This would seem farcical if it were not so deadly serious.

Perhaps twenty five years ago there were only a few thousand people with Lyme, and it was not too expensive for the insurance companies to allow open-ended treatment.
But now - well, we have a world-wide problem, destroying lives on a terrible scale, and if the truth were to be known, it is probably at an epidemic level in some areas.

Look at the situation in Europe: in Southern Sweden the incidence in 2005 was 464 cases per 100,000 of the population; Holland reported 103 per 100,000 that same year.

464 per 100,000 - that's twice the level, in epidemiological terms, at which the situation is labelled as an epidemic.

It's becoming obvious to anyone who spends a little time examining the literature and also looking at patient organisations and their well-informed advocates' evidence, that this tick-borne illness is complex, persistent beyond the normal short-term treatment, unless caught in the very early stages, and able to cause havoc in both brain and body.

Unfortunately for us in Europe, the USA seems to control the world, or rather, their insurance companies control the world, including the press and the great institutions of learning and medicine. So it's been easy for journalists, doctors and scientists to go along with the insinuations that sick people are merely inadequates, and they can leave them to suffer with their labels of yuppie flu, ME or chronic fatigue syndrome, or too much stress, hysteria, somatisation etc etc. It's been easier to blame it on the patient rather than do the proper tests and use the latest research.

Do they actually realise how many extremely sick people have been denied disability payments or ill-health retirement?

Or does someone somewhere in the lofty towers of the corporate insurance and hedge funds know that their profits will shrink if sick people are treated with compassion and the correct medical help?

Money does rule the world but when the great and the wealthy suddenly realise that they cannot escape this disease, when their children and grandparents suffer from this new plague, they will come running to the very doctors they have tried to silence.

I write as a person who suffered 19 years before being diagnosed, and I am still making new (IgM) antibodies to lyme after repeated treatments over the last 5 years. The borrelia bug and the co-infections keep changing or hiding and our immune systems keep trying to beat them - we need far more science and research to beat this illness, not denial from the ivory towers of academia.

[Pat Macomber]

I applaud the YDR of bringing the problem of Lymes Disease to the front page. I was one of the people who contacted Commissioner Reiley welcoming him into "the club".

This story only tells a portion of the problem. I know of at least two people who have permanent physical problems because they COULD NOT get tested. Let me repeat that -- they asked for the Lymes test and their doctors refused. I think the YDR should do a follow-up story along this line of inquiry.

Why do doctors say no, particularly in PA? If you want to be practical, the insurance companies would spend a lot less money if they ran the tests and paid for the first round of antibiotics earlier in the disease cycle, than for doctors to refuse to give the test, resulting in more costly testing and treatment later on.

One person I know finally paid to have the blood work done because he was so sick. Now he has chronic joint pain -- AND THE TEST CAME BACK POSITIVE!!

PA would probably have the highest number of cases reported if the doctors would test. I was lucky, I was treated within a month of getting bit, and took the antibiotics for 26 days. It took me a long time to get over the exhaustion and my memory is slowly getting better. I was one of the lucky ones. I cannot imagine how long-term suffers do it.

[Semi-literate]

Denise in UK wrote:

All those doctors like Auwaerter, and the dozen or so who have published in the prestigious journals about Lyme being easy to cure and short-lasting - I ask myself how do they sleep at night?
They are ignoring the overwhelming scientific and medical evidence of persistent infection. Some of them quite openly stated that there was persistent infection in their earlier papers in the 1980 and 1990s.
What's made them change their minds now?
They have somehow overlooked all the global research stating that the Lyme spirochetes are very similar in many ways to Syphilis, hiding in the body and needing sometimes years of treatment? And somehow forgotten their own published papers. This would seem farcical if it were not so deadly serious.
Perhaps twenty five years ago there were only a few thousand people with Lyme, and it was not too expensive for the insurance companies to allow open-ended treatment.
But now - well, we have a world-wide problem, destroying lives on a terrible scale, and if the truth were to be known, it is probably at an epidemic level in some areas.
Look at the situation in Europe: in Southern Sweden the incidence in 2005 was 464 cases per 100,000 of the population; Holland reported 103 per 100,000 that same year.
464 per 100,000 - that's twice the level, in epidemiological terms, at which the situation is labelled as an epidemic.
It's becoming obvious to anyone who spends a little time examining the literature and also looking at patient organisations and their well-informed advocates' evidence, that this tick-borne illness is complex, persistent beyond the normal short-term treatment, unless caught in the very early stages, and able to cause havoc in both brain and body.
Unfortunately for us in Europe, the USA seems to control the world, or rather, their insurance companies control the world, including the press and the great institutions of learning and medicine. So it's been easy for journalists, doctors and scientists to go along with the insinuations that sick people are merely inadequates, and they can leave them to suffer with their labels of yuppie flu, ME or chronic fatigue syndrome, or too much stress, hysteria, somatisation etc etc. It's been easier to blame it on the patient rather than do the proper tests and use the latest research.
Do they actually realise how many extremely sick people have been denied disability payments or ill-health retirement?
Or does someone somewhere in the lofty towers of the corporate insurance and hedge funds know that their profits will shrink if sick people are treated with compassion and the correct medical help?
Money does rule the world but when the great and the wealthy suddenly realise that they cannot escape this disease, when their children and grandparents suffer from this new plague, they will come running to the very doctors they have tried to silence.
I write as a person who suffered 19 years before being diagnosed, and I am still making new (IgM) antibodies to lyme after repeated treatments over the last 5 years. The borrelia bug and the co-infections keep changing or hiding and our immune systems keep trying to beat them - we need far more science and research to beat this illness, not denial from the ivory towers of academia.

Good post. Hope you can cope with your issues. I know a number of folks with Lyme's and it is a rough thing to have.

[Lyme in WA]

It is disappointing to see that Auerwater uses the term "disease de jour" in describing Lyme disease. This shows a lack of original thinking since Gary Wormser of IDSA and Phillip Baker of ALDF/IDSA have also recently made the same comment.

To help Auerwater for future interviews, I offer the following statements by some of the "Lyme greats."

“Lyme disease is primarily a disorder of suburban, educated middle- and upper-class people.
-Alan Barbour, MD. Journal of the American Medical Association, January 21, 1998

"... a topical antibiotic to prevent Lyme disease after a tick bite is desirable":
-Alan Barbour, MD, Lyme Disease, The Cause, The Cure, The Controversy, page 244

"An antibiotic ointment might prevent infection from other bacteria but would likely have little effect on B. burgdorferi":
-Alan Barbour, MD, ibid., page 222

"Lyme is a yuppie disease that only rich suburbanites get":
-Dr. Steven Ostroff, Associate Director in the Infectious Diseases Division of the Centers for Disease Control and Prevention during interview by Illinois legislators in June 1997

"When I contradict a previous diagnosis of Lyme disease by another doctor, it is in order to reassure the patient":
-Robert T. Schoen, MD, Yale School of Medicine, quoted in a Letter to The Editor, New Haven Register, June 3, 1997

"Over time, the [Lyme] disease tends to burn itself out, even without treatment, in many people":
-Eugene Shapiro, MD, quoted by Karen Freeman in The New York Times, October 24, 1996

"Lyme disease, although a problem, is not nearly as big a problem as most people think." The bigger epidemic," Dr. Sigal said, "is Lyme anxiety."
- Leonard H. Sigal, MD, Quoted by Gina Kolata in New York Times, June 13, 2001

"We remain skeptical that antibiotic therapy helps:"
-Allen C. Steere, et al., Annals of Internal Medicine 86 (1997): 685

He read a part of the letter..."My life has been turned upside down by "Lyme." I ... haven't been able to work in 5 years. I've been divorced and have claimed bankruptcy due to mounting medical bills. Currently I am also trying to take care of my mother who lives with me and is suffering from pancreatic cancer, on top of all this I feel terrible."' Steere put down the letter and stared at me for a long moment. "What I suspect is that she doesn't have Lyme disease but some kind of psychiatric illness," he said.
Stalking Dr. Steere Over Lyme Disease, New York Times, June 17, 2001

"Lyme is a socially acceptable disease. You can talk about it at any cocktail party":
-David Weld, head of the American Lyme Disease Foundation, in USA TODAY

[Jen E]

I have Lyme and have had it for 5 years. I have two small children and a husband that I can barely take care of due to joint, muscle pain and buzzing as well as chronic fatigue and cognitive issues. I was diagnosed positive by western blot. I was finally treated for the past year and have gotten 50% better.. I can no longer afford treatments and have had to file bankruptcy. Something has to be done about the insurance not covering this. I fear that the disabling affects of lyme will probably kill me since I cannot afford treatment and insurance will not pay. If anyone has any suggestions let me know. [e-mail]
Thanks

[Joanne Drayson]

I have battled ill health 6 years. My GP suspected Lyme Disease after a chance course of antibiotics improved my arthritis and muscle weakness. She had treated other patients in the early satges of tick bite and rashes. I had consulted at the surgery with bites, rashes and summer flu'all confirmed on her computer. She treated me on long term antibiotics because I responded to the treatment, off my symptoms deteriorated. Not rocket science.
I had been on steroids for wrong diagnosis so hardly ant inflammatory effect and it has taken 2 years antibiotics to get me to nearly 100% so hardly placebo effect.
Eventually I saw a specialist who confirmed my GP's suspicions. My blood tests were negative hardly surprising after 20 months of steroids.

Here in UK we are told IDSA guidelines are authoriatative, but we have other different species than the one that guidelines are based on.

I am doing well thank goodness I had two thinking doctors but I am in touch with 2036 other patients through Eurolyme who all struggle for diagnosis and treatment because of IDSA flawed guidelines

It should not be for ILADS to prove treatment works it should be up to IDSA to prove treatment does not work. Something is seriously wrong here and newspapers aught to take a tip on how to write good investagative journalism or else just get Pam Weintraube to write their articles.
Joanne Drayson Guildford Surrey UK

[Semi-literate]

Jen E wrote:

I have Lyme and have had it for 5 years. I have two small children and a husband that I can barely take care of due to joint, muscle pain and buzzing as well as chronic fatigue and cognitive issues. I was diagnosed positive by western blot. I was finally treated for the past year and have gotten 50% better.. I can no longer afford treatments and have had to file bankruptcy. Something has to be done about the insurance not covering this. I fear that the disabling affects of lyme will probably kill me since I cannot afford treatment and insurance will not pay. If anyone has any suggestions let me know. [e-mail]
Thanks

Just remember, it is the Karl Rovian-led, Neo-Fascist Right that tells us all that people like you don't merit proper health care: You have been afflicted by this "illness" because of some basic character flaw on your part, you have not set aside enough money to maintain your own health (like those bastards magically, somehow do!), and if you would have planned ahead and lived within your means (like taking up residence in a cardboard box and living on $5.00 a week like a good working person is supposed to do [Oops! UNLESS THEY ARE RICH! And the rich, we know, all deserve to be rich, because they are better people than you and me.]) you would have plenty of money to pay the doctors' fees and for all the meds.
Of course, the people telling you all this line of crap are all deluded, selfish swine!
They have NO CLUE how much medication and treatment cost for anything, and they think it is just fine that American insurance companies are running the health care "industry," and boy, has it ever turned into an industry!
Good luck and don't give up!

[concerned]

My daughter is 7. She was just diagnosed with lyme disease for the first time and we have no idea how long she had it. She had fevers, headaches, foot pain and stomach pains on and off for a month. We were at the dr a few times and they kept saying it was a viral infection. Finally over this July 4th weekend, she got rashes literally ALL over her body. We took her to the dr and they said it's good we caught it fast and they gave her 21 days of anti-biotics and said she would be fine. I keep reading these arcticles of people that have all these problems and how do we know we caught it fast??? I never found a tic or even saw one on her. The bad symptoms were within the last month but I'm just not sure how long it could have been in her system before the rash came. I am glad about this arcticle because it's making more and more people aware of the issue! If anyone has advice for me now for my daughter, please add a comment so I know what to watch for. Thanks

[Bob]

The only reason Lyme disease treatment is controversial is that health insurers and other business interests have lobbyists paying "consultants" in medical schools, doctors, government officials and anybody else costing them money. If Lyme were a bio-weapon released by a foreign power to hurt us our government couldn't do much more to help them succeed. Why doesn't anybody listen to the patients, who are proving repeatedly that long term antibiotic care is not only not "dangerous" but is a life saver. The Lyme bacterium is one of the most complicated organisms known, able to change its protein envelope, form protective cysts, and emerge from the cysts in a form with no cell wall to easily enter the cells. There is ample evidence that Lyme requires long-term antibiotic treatment, conveniently ignored by the IDSA and the CDC. Attorney General Blumenthal in Conn. proved that the IDSA doctors all had conflicts of interest when they established the cheap and restrictive guidelines, and now doctors who specialize in Lyme are being barred from working on the new panel. How else do you treat a bacterial infection but with antibiotics?

[Roxanne]

My son was diganosed with lyme disease 2 years ago. I had to fight with the doctor to even get him tested. I was told that it was very unlikly that it was lyme disease. I reseached alot of things becouse no one know what it was. I thought it could be lyme disease and the doctor disagreed. His test came back possitive. My son was only 7 years old at the time. Right now he seams find but he was on antiboitics for 4 weeks. I am afraid that there still might be long term effects for the disease. It can be very frightning at times.

[Sue B]

"My daughter is 7. She was just diagnosed with lyme disease for the first time and we have no idea how long she had it... The bad symptoms were within the last month but I'm just not sure how long it could have been in her system before the rash came."

Hi Concerned,
If you are lucky, your daughter will not have any more problems. If you are unlucky you must be prepared to fight for her. Please read Pamela Weintraub's book, which offers a balanced, comprehensive view of this very complex and difficult disease. The book will give you facts that will help you make decisions.
Sue B.

[Scott Adams]

I have a free Lyme Resource CD that I have compiled in my wife's 3 year fight with Chronic Lyme Disease. It contains information on what we have learned helping her recover. If interested you may download it or I will mail it to you postpaid in the US/Canada. Email me for more information
Scott Adams
[e-mail]
www.msadams.com

[Jill]

Many of you are so brainwashed. Ten years from now, lyme disease will be discussed and diagnosed as much as Epstein-Barr is today.

[Cheryl]

Jill wrote:

Many of you are so brainwashed. Ten years from now, lyme disease will be discussed and diagnosed as much as Epstein-Barr is today.

Why do you say "many" are so brainwashed??......Pls explain as it sounds demeaning.

We can only hope you are correct, but at the speed at which lyme has been diagnosed in the past 20 years, I have my serious doubts......It is a very complicated pathogen, and it will take 10 more years to get more research on the books.