Chronic Lyme: Belief over Science

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Spanky
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Chronic Lyme: Belief over Science

Post by Spanky » Sat 14 Aug 2010 15:05

Whether or not the parties are right or wrong on the ultimate question, I certainly think that the proponents of "chronic Lyme" have approached the issue as a matter of belief.

And that is wrong.

Also, after observing the debate for ten years, I feel safe in saying that if the "LLMD" approach is to cure blithering idiocy through extended iv therapy, it is not working, based on what you can read online.

(But why does every Lyme essay, from either side, have to start out with Galileo? Poor Galileo).

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(Lifted from RR):

Chronic Lyme Disease: Belief over Science

http://www.nehealthadvisory.com/2010/08 ... er-science
In 1633, Galileo discovered firsthand what happens when science conflicts with belief. He was convicted of heresy against the Catholic Church, in large part because he made an astonishing observation—the earth was not the center of the universe; instead the center of the universe was the sun, and all the planets revolved around it.

I started thinking about Galileo after talking with infectious disease experts about chronic Lyme disease. Despite the scientific and medical evidence to the contrary, there are people who believe they need long-term antibiotics to manage their symptoms even though experts say that this long-term treatment may actually be harmful.

In 2006, the Infectious Diseases Society of America (IDSA) issued guidelines on diagnosing and treating Lyme disease. In the recommendations, the IDSA said that there is no evidence of a chronic form of the disease requiring long-term antibiotics. However, not everyone agrees.

The issue is so contentious that Connecticut Attorney General Richard Blumenthal challenged the 2006 Lyme disease guidelines. As a result, an independent review panel spent more than a year studying the evidence relating to Lyme disease and its treatment. The panel included an ombudsman that the Attorney General helped appoint, so that there would be an added level of independence and oversight.

After analyzing more than 1,000 studies and listening to the testimony of people from all walks of life, the panel unanimously agreed that the IDSA’s 2006 Lyme disease guidelines, which are based on the highest-quality medical and scientific evidence available, are correct. In fact, they are corroborated by guidelines and statements by other U.S. and European medical scientists.

Once again, science and belief are in conflict. Science counters some people’s belief about using antibiotic treatment for months and even years to treat chronic Lyme disease.

Diagnosing Chronic Lyme Disease

I asked two infectious disease specialists about this disconnect between science and belief, and they gave me a lesson in human nature.

“There are a lot of people who are not getting satisfaction from the health care system because they don’t have clearly defined medical illnesses that someone can put a name on and say, ‘You have this and it is due to this,’” says Dr. Gary Wormser, chief of infectious diseases at New York Medical College, who practices at Westchester Medical Center.

These people suffer from vague symptoms that include cognitive dysfunction, aches and pains, fatigue, etc., and either a doctor can’t figure out what is wrong with them or they don’t accept the diagnosis the doctor gives them.

They want to feel better and medicine is failing them.

“Can you imagine their relief when someone who has been suffering for years with fatigue and other issues, and every doctor has thrown up their hands and said, ‘I don’t know what is wrong with you’ goes to someone who says, ‘I know what is wrong with you. You have chronic Lyme disease and I know how to treat you.’ Wouldn’t that be a relief to you?” Wormser asks.

To really confuse things, there is a small group of patients diagnosed with Lyme disease who suffer from a post-infectious syndrome. They are no longer infected with Borrelia burgdorferi, the bacteria that cause Lyme disease, but they have residual achiness, fogginess, fatigue and a general feeling of malaise, explains Dr. Paul Auwaerter, clinical director of infectious diseases at Johns Hopkins University School of Medicine.

But antibiotics won’t help them because they are no longer infected with the bacteria. Studies have shown that approximately one-third of people who suspected they had chronic Lyme disease got better when they received a placebo (a sugar pill or fluid) they believed was an antibiotic.


Lyme Disease: The Basics

Lyme disease is not an easy disease to get. Fewer than 30,000 people a year develop Lyme disease, according to the Centers for Disease Control. The particular ticks that spread Lyme disease are only located in certain states. About 95% of the cases occur in 12 out of 50 states. And the tick that transmits B. burgdorferi takes three or more days to infect people. So, if you take your dog for a walk in the woods and see a tick crawling on your arm when you get back into the house, and you remove it, there wasn’t time for it to give you Lyme disease.

A person with early Lyme disease usually—but not always—gets one or more red circular rashes. They also may have fatigue, chills and fever, headache, muscle and joint pain and swollen lymph nodes.

Some people suffer from later manifestations of Lyme disease, and they have pretty serious symptoms: arthritis, nervous system problems such as numbness, pain, nerve paralysis and meningitis. They also can have irregular heartbeats and have problems with memory or cognition, fatigue, headache and sleep disturbances.

Whether in the early or late stages, Lyme disease is treated with a two- to four- week course of antibiotics. Sometimes patients with late Lyme need a second course of antibiotics, but they don’t need antibiotics for months and years.

This is from the CDC:

“Several antibiotics are effective for treating Lyme disease. These are usually given by mouth but may be given intravenously in more severe cases. Patients treated with antibiotics in the early stages of the infection usually recover rapidly and completely. Most patients who are treated in later stages of the disease also respond well to antibiotics. A few patients may have persistent or recurrent symptoms and may require a second four-week course of antibiotic treatment. Longer courses of antibiotics have not been shown to be beneficial in patients who have been previously treated and have chronic symptoms.”

The Ill Effects of Antibiotic Overuse

Anyone who takes unnecessary antibiotics for a long time puts the rest of society at risk because they will develop antibiotic-resistant organisms, which they can spread to other people. If they have to go to the hospital for any reason and they share a room with other patients, they can pass those antibiotic resistant organisms to them. Then when antibiotics are needed to cure another serious infection, they might not work.

“We regard antibiotics as a precious commodity that is overused, and we are starting to lose them because of this overuse,” says Wormser, reminding me that antibiotics are not as benign as many people think. Because just about everyone in America has taken at least one course of antibiotics, people believe antibiotics can’t hurt them.

But plenty of people suffer real side effects from antibiotics, including rashes, diarrhea, nausea and yeast infections; others can end up with impaired kidney or liver function, and antibiotics can damage other organs, too. A person taking IV antibiotics can develop a blood infection.

Sometimes the side effects are deadly. There was a report in the journal Clinical Infectious Diseases of a woman who believed she had chronic Lyme disease and who was taking antibiotics for a long time. The antibiotics killed good bacteria in her digestive tract and allowed Clostridium difficile bacteria to thrive. She developed C. difficile diarrhea and died.

Some of the practitioners who specialize in treating chronic Lyme disease do not accept health insurance, so patients have to pay all the expenses out of pocket. And these treatments go on for a very, very long time.

“This is something I am very passionate about and it makes me incredibly angry,” says Auwaerter. “I have seen a large number of patients who have spent significant amounts of money to continue treatment for something that is not Lyme disease.”

Some of them eventually do get a definitive diagnosis, Auwaerter adds, and often it’s a serious problem. “I’ve had patients with severe problems, such as Parkinson’s disease, multiple sclerosis, rheumatoid arthritis, sarcoidosis (swelling of the lymph nodes, lungs, liver, eyes, skin and other tissues) and hemochromatosis (too much iron in the body), all of which I’ve diagnosed this past year in my clinic in people who were labeled as having ‘chronic’ Lyme disease.”

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Re: Chronic Lyme: Belief over Science

Post by X-member » Sat 14 Aug 2010 15:33

I do not "believe", I know that I have chronic (=of long duration) Lyme!

And it is easy to prove, because I still have the bacteria in my blood!

Se my avatar! This picture (from my blood) was taken after 3 years of (oral) treatment!

I have to add, that I am immuno deficient!

And of course long term abx work in many, many cases, but you have to have a good combination treatment, and for a rather long time! And you have to have a good immune defence, too of course. Otherwise it is hard, or maybe impossible to come into remission!

But, I can agree with one thing, and that is that abx don't work "good enough", or "fast enough".

But, what else do we have?

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Re: Chronic Lyme: Belief over Science

Post by LymeH » Sat 14 Aug 2010 16:42

Spanky wrote: Chronic Lyme Disease: Belief over Science

http://www.nehealthadvisory.com/2010/08 ... er-science

<Snip>
“There are a lot of people who are not getting satisfaction from the health care system because they don’t have clearly defined medical illnesses that someone can put a name on and say, ‘You have this and it is due to this,’” says Dr. Gary Wormser, chief of infectious diseases at New York Medical College, who practices at Westchester Medical Center.

<snip>

Can you imagine their relief when someone who has been suffering for years with fatigue and other issues, and every doctor has thrown up their hands and said, ‘I don’t know what is wrong with you’ goes to someone who says, ‘I know what is wrong with you. You have chronic Lyme disease and I know how to treat you.’ Wouldn’t that be a relief to you?”
Wormser asks.

But plenty of people suffer real side effects from antibiotics, including rashes, diarrhea, nausea and yeast infections; others can end up with impaired kidney or liver function, and antibiotics can damage other organs, too. A person taking IV antibiotics can develop a blood infection.
{These symptoms are usually attributed to a Herx}
Carina wrote:I do not "believe", I know that I have chronic (=of long duration) Lyme!

And it is easy to prove, because I still have the bacteria in my blood!

Se my avatar! This picture (from my blood) was taken after 3 years of (oral) treatment!

<snip>
But, what else do we have?
I see the avatar, but a picture on an avatar does not 'prove' persistent infection, or any infection at all. Take a blacklight to your bathroom sometime and you will see all sorts of 'things', creepy looking. I hesitate to suggest that, because there are already posts on LNUSA by people who seem to believe it is necessary to wear a face mask just to flush their toilet. There is too much disease and fear-mongering in Lymeland. Just because something, some bacteria or organism, exisits does not mean it is the source of illness.

The onslaught of medical 'care' - the excessive medications, excessive herbs, etc., combined with the fear-based chronic Lyme propaganda and the near total disregard of the effects of the medications may the be source of illness for many chronic Lyme sufferers.

The effects of the medications are fairly well established - not much 'belief' to it. There needs to be more attention placed on the science (the known effects of the treatment) and less on the unknown beliefs.

Consider the obvious causes of illness, first. Be careful of those 'with all the answers'.

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Re: Chronic Lyme: Belief over Science

Post by Spanky » Sat 14 Aug 2010 16:58

"Carina":
I do not "believe", I know that I have chronic (=of long duration) Lyme!

And it is easy to prove, because I still have the bacteria in my blood!

Se my avatar! This picture (from my blood) was taken after 3 years of (oral) treatment!

I have to add, that I am immuno deficient!
Well, if you are immuno-deficient, though...does that make you a very good example, compared to the general population?

And, in addition to what LH said...I would simply say that it is very important to keep focused on the exact nature of the argument.

That is, the question at hand is really about the effective treatment of the symptoms...not, necessarily, about whether some of the causative organism can survive conventional treatment.

And you need to address that question with evidence. Evidence that shows, regardless of the cause of the symptoms, that attacking it with antibiotics produces positive results...not just for a few individuals who report that it helped them...but for a broadly representative sample of the entire population.

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Re: Chronic Lyme: Belief over Science

Post by X-member » Sat 14 Aug 2010 17:46

I say 3 things:

1. Chronic infections cause immune deficiencies!

2. I can prove that my avatar image is from my own blod, since it is a smear (that I, of course have saved), and therefore it is easy to check the blood on it with DNA, or someting else.

3. I can not do any studies, but I can defend myself against people that don't know much about chronic (=of long duration) Lyme!

Those who suffer from chronic and hard to cure Lyme, is a minority, not the majority!

So, I am not interested in info that is supposed to cover most of the Lyme cases/the majority.

But if you can find any study that can prove that 100% of all Lyme cases are cured with only 4 weeks with only one type of abx, please give it to us!

Of, course, it could be some wrong diagnoses too, but most persons that suffer from chronic Lyme, have already had a lot of tests done in the past, so I think, that most cases that have effect from abx, actually suffer from Lyme (or maybe some other "hard to diagnose/hard to treat" chronic infection.).

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Re: Chronic Lyme: Belief over Science

Post by LymeH » Sat 14 Aug 2010 18:06

And, in addition to what LH said...I would simply say that it is very important to keep focused on the exact nature of the argument.

That is, the question at hand is really about the effective treatment of the symptoms...not, necessarily, about whether some of the causative organism can survive conventional treatment.

And you need to address that question with evidence. Evidence that shows, regardless of the cause of the symptoms, that attacking it with antibiotics produces positive results...not just for a few individuals who report that it helped them...but for a broadly representative sample of the entire population.
I believe that some chronic Lyme patients are not recovering because the treatment of their symptoms is in fact the cause of their symptoms. Their symptoms are being induced by their medical 'care' - the medications, supplements, protocols and other therapies.
But if you can find any study that can prove that 100% of all Lyme cases are cured with only 4 weeks with only one type of abx, please give it to us!

Of, course, it could be some wrong diagnoses too, but most persons that suffer from chronic Lyme, have already had a lot of tests done in the past, so I think, that most cases that have effect from abx, actually suffer from Lyme (or maybe some other "hard to diagnose/hard to treat" chronic infection.).
Tests are no substitution for common sense. Most Lyme symptoms can be treatment-induced and most standard tests can not make that distinction, generally. Just because a patient has seen a lot of physicians and endured a lot of tests, does not mean the obvious causes of their illness have been appropriately addressed.

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Re: Chronic Lyme: Belief over Science

Post by X-member » Sat 14 Aug 2010 18:11

I believe that some chronic Lyme patients are not recovering because the treatment of their symptoms is in fact the cause of their symptoms. Their symptoms are being induced by their medical 'care' - the medications, supplements, protocols and other therapies.
I have only been better, and I have not got any new symptoms (due to the treatment).

Is it possible to have exactly the same symptoms back (that was caused by Lyme), just because you are on abx?

I don't think so!

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Re: Chronic Lyme: Belief over Science

Post by Cobwebby » Sat 14 Aug 2010 18:26

Anybody here been treated for only 4 weeks???

When I look at the full spectrum of my life- even though I was treated for more than 4 weeks- Lyme Disease is still a spec on the radar.
The greater part of our happiness or misery
depends on our dispositions,
and not on our circumstances.
Martha Washington

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Spanky
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Re: Chronic Lyme: Belief over Science

Post by Spanky » Sat 14 Aug 2010 19:30

"Carina":
I have only been better, and I have not got any new symptoms (due to the treatment).

Is it possible to have exactly the same symptoms back (that was caused by Lyme), just because you are on abx?

I don't think so!
I understand what you mean, I think. I had a continuation of symptoms for years afterward...and I know that I did not have those symptoms before.

And, you are told that Bb causes the illness.

And so, you think that if you still have symptoms, you must still have Bb.

And that is NOT necessarily true. And you need to produce evidence that longterm antibiotic therapy helps...not just a bunch of doctors who claim it does.

And the available evidence tends to support the opposite conclusion.

If you throw antibiotics at something that doesn't respond to them, you are arguably just wasting your money, at best...and possibly endangering your health.
To really confuse things, there is a small group of patients diagnosed with Lyme disease who suffer from a post-infectious syndrome. They are no longer infected with Borrelia burgdorferi, the bacteria that cause Lyme disease, but they have residual achiness, fogginess, fatigue and a general feeling of malaise, explains Dr. Paul Auwaerter, clinical director of infectious diseases at Johns Hopkins University School of Medicine.

But antibiotics won’t help them because they are no longer infected with the bacteria. Studies have shown that approximately one-third of people who suspected they had chronic Lyme disease got better when they received a placebo (a sugar pill or fluid) they believed was an antibiotic.

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Re: Chronic Lyme: Belief over Science

Post by LymeH » Sat 14 Aug 2010 20:07

Carina wrote:I have only been better, and I have not got any new symptoms (due to the treatment).

Is it possible to have exactly the same symptoms back (that was caused by Lyme), just because you are on abx?

I don't think so!
I am not sure I fully understand your question, due to language differences.

I understand you to say that you have only improved from your Lyme treatment and have not acquired any new symptoms. How do you know that your original symptoms were in fact from Lyme (seriously, rhetorical question only for you to consider).

I am suggesting, for some patients, it is not the antibiotics that cause their improvement. Other treatment protocol changes may have caused their perceived improvement. Sometimes people focus on too narrow a set of events and blindly exclude other factors that could significantly effect an outcome. Whether the exclusion is due to ignorance or intention as a means to prolong treatment is a different topic.

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