Health Through Knowledge

The Serano Group


Monday, May 30, 2011

Lyme Borreliosis Tests

How good are they?

Get sick and you are filled with uncertainties. Did I catch something? How long have I had it? How bad is it? Am I going to have more problems? How do I know when I am over it? The questions go on and on.

It gets harder because, real-world, nothing guarantees every disease has to have a clear progression following a neat, concise course. Usually, the easy diseases are acute. You suddenly get sick. You get better in a week or two. The illness matches the textbook description. Your symptoms match those in the textbook.

If you get an infection, both you and your doctor would like it to be one of the easy ones.

But, real-world, some diseases are easy and others not. Lyme disease, more correctly, Lyme borreliosis, is one of the worst. Symptoms can come and go and may vary greatly from one individual to another. Some symptoms can go into a period of quiescence and reappear after an accident or operation. Other microbes can affect the course of the disease. Different individuals have varying responses to treatment.

Unfortunately, nothing messes up a complex disease more than a bad case of politics.

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Posted by Joel Spinhirne
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Wednesday, May 04, 2011

Maureen Dowd Is Going To Talk To Her Doctor

There are hard things to talk about. Then, there are really hard things to talk about.

On April 12, 2011, Maureen Dowd wrote about her brother who died a few years ago from what might have been  a hospital-acquired infection. She reflects on how hard it is to confront another adult who is doing something reckless, or just plain wrong, especially when they are a professional. It is particularly hard when that professional is a doctor. She quotes Elizabeth Cohen:

“There are all sorts of reasons we default to being quiet,” she said. “It is general etiquette not to correct another adult, especially when this is their profession. But when the consequences are so grave, you have to summon up your courage.”

Dowd talks mostly about getting doctors to wash their hands, not exactly a controversial or complex medical issue. But, if people are so reluctant to confront a doctor about something so simple and obvious, just how will the patient-doctor encounter go for a complex and less obvious subject? And, how much will the sick or injured pay if they don’t?

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Posted by Joel Spinhirne
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Saturday, January 15, 2011

Who We Are

We were asked on another forum who we are and what is our agenda. "Agenda" has become an almost negative word, hasn’t it? Even so, the question is one that gets you to thinking. Here is our reply.

We began as a group concerned about under-treatment of borreliosis, the infection of which the poorly termed "Lyme disease" is a subset. After hearing of hundreds, maybe thousands of people abused by the U.S. medical system, and thinking about root causes, we realized Lyme disease is but a small part of the big problem: a medical-industrial complex dedicated to the interests of insurance companies, drug companies, physician groups, and hospitals. The medical care of our citizens is often sorely neglected. This is more than an issue of responsibility, decency, morality, and ethics. It is profoundly stupid.

We don’t feel focusing on one condition is going to do much. Disease factionalism is a tool, used intentionally or not, that keeps those not wanting reform in control. So, if we have an agenda, it is to get this changed. But, here is where a goal can sabotage the most expedient tactics. Most people, reading something like the previous paragraph, will click onto a new website page before finishing the second sentence.  A story about a sick child down the street who needs a $20,000 operation, on the other hand, captivates most people’s attention. Yes, some of us have family members with health problems. I have health problems. Yes, some of us have been treated for Lyme borreliosis and associated infections, with dramatic results. No, the treatments have not been entirely curative. Yes, we are convinced if our medical systems were not sleep-walking through a fantasy world we would be much better. A single person’s medical problems can be quite interesting, especially if you think you have the same thing. And, especially then, it often elicits a response. But, all these self-identifying condition and disease groups are not going to get most people’s, maybe not anyone’s, problems fixed. It will take unified action from all the medically ignored and mistreated.

We have heard individual accounts of stories almost identical to ours hundreds, maybe thousands of times. As we show on our website, there are millions with persisting conditions who probably could be helped by treatment for under-treated infections.  As to how one gets the overwhelmed, unmotivated public interested, there probably is not a single answer except that it it going to take some courage, consideration, and hard work. Would we be doing what we do if family members had not gotten sick? I would like to think perhaps that I am such a decent, informed, and compassionate person that the answer is yes, but realistically, probably no.

I hear stories of how efforts of a few people can make a big difference. I think it was Malcolm Gladwell who wrote recently that a few high school friends started the lunch counter sit-ins that resulted in major civil rights changes. He also pointed out that it took an intense personal relationship to get them started, something increasing rare with our digital technologies. I am convinced that getting help for one person, one disease, one deprived group, maybe even one country, is not going to fix the disastrous state of medical care. We are quite interested in getting the best citizen activists available together to work on this.

Posted by Joel Spinhirne
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Wednesday, August 25, 2010

Good Medical News. Now what?

There was good medical news yesterday.

Let’s take a walk through ME/CFS, XMRV and MS, CCSVI…

In 1995, Paolo Zamboni, an Italian surgeon, did not accept common medical answers when his wife was diagnosed with multiple sclerosis. He reviewed the literature instead of relying on current rote guidelines and found promising, yet abandoned theories. One involved iron accumulation in the central nervous system. Zamboni, who specializes in vascular problems, realized that obstruction of blood flow away from the brain could be causing the iron issue. After radiological imaging showed obstruction in his wife’s jugular vein he performed balloon angioplasty—a simple, well-understood procedure— with remarkable results. Her MS symptoms rapidly resolved and did not return. The promise for MS sufferers did not go unnoticed. Chronic cerebrospinal venous insufficiency (CCSVI) appears to be an important, sometimes primary, cause of MS symptoms. Clinics providing surgical correction to CCSVI are being opened in medical tourism sites worldwide.

In October, 2009, researchers published a paper demonstrating a correlation between xenotropic murine leukemia virus-related virus (XMRV) and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). They found 67% of ME/CFS suffers were positive for XMRV and only 4% of healthy subjects were positive.

Government agencies, particularly the Centers for Disease Control, would be expected greet news like these reports with their full support and resources. But something much different happens—almost invariably.

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Posted by Joel Spinhirne
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Thursday, April 22, 2010

IDSA Confirmed As Useless

The IDSA reviewed their egregious guidelines for Lyme disease and found them just fine.

In an expected move, the IDSA confirmed their inability to do more than offer cookbook solutions to a complex biological and medical problem crudely termed Lyme disease. Their ideology and dedication to self-interest prevents them from offering a modicum of logic or even common decency. Citizens need to remove the special privileges and funding we have granted their corrupt organization. Their subterfuge does not deserve your attention, but if you must look here.

Posted by Joel Spinhirne
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Monday, September 28, 2009

Under Our Skin In Oregon

The documentary film, Under Our Skin, had record attendance in Portland, Oregon.

The Serano Group attended four screenings of the theatrical release of Under Our Skin at the the Hollywood Theatre in Portland, Oregon, September 26 and 27, 2009. A well produced documentary film can convey much in a short time, with great impact. The director, producers, and everyone involved with the film are to be commended.

While staffing our table, yet again we were struck by the number and similar arc of people’s stories: health problems unresolved for years, a chance event that led them to the proper diagnosis of Lyme borreliosis, and successful treatment, usually out of state.

Also, yet again we were struck by a disconnect: the CDC’s reporting of six to eighteen Lyme disease cases in Oregon each year and a movie house in Portland, Oregon on a sunny afternoon with over 250 people, most knowing several people diagnosed with Lyme disease.

The world hears about the eighteen CDC Lyme disease cases in 2008 and nothing from the hundreds not meeting CDC criteria or process hurdles. We are encouraged by the people we talked to before and after the film that asked to participate in our census. Only by getting an accurate count of who has had L. borreliosis will proper diagnosis, treatment, and research be realized.

Whether you have attended Under Our Skin or not, if you know anyone who has or had Lyme disease or unresolved condition possibly related, please help us get them counted. We particularly need to count those who have received treatment and improved. Our census uses a survey that most people can complete online in less than twenty minutes. (Other ways to take the survey are available.) We issue controlled invitations; just send an email message to or click here. Those of you who provided your email addresses at the Under Our Skin showing should receive your invitation soon.

Awareness of the size and severity of L. borreliosis is essential to getting the problem fixed. We appreciate your attention and help.

Posted by Joel Spinhirne
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Monday, September 14, 2009

Best Rebuttal to the Klempner Study

From an unassailable source…

It is simply no longer possible to believe much of the clinical research that is published, or to rely on the judgment of trusted physicians or authoritative medical guidelines. I take no pleasure in this conclusion, which I reached slowly and reluctantly over my two decades as an editor of The New England Journal of Medicine.

Dr. Marcia Angell, The New York Review of Books, Volume 56, Number 1. January 15, 2009 Drug Companies & Doctors: A Story of Corruption.  (Dr. Angell resigned as editor-in-chief of The New England Journal of Medicine in June, 2000. The Klempner study of a Lyme disease treatment was published in June, 2001.)

Klempner joined the editorial board of The New England Journal of Medicine after Dr. Angell resigned. You can read our evaluation of Klempner’s study here.

Posted by Joel Spinhirne
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Monday, June 29, 2009

Great Book on Lyme Borreliosis Published in 1917

Want to know about Lyme borreliosis? Learn everything you can about syphilis.

Project Gutenberg is a wonderful thing. They take books with expired copyrights, use volunteers to convert them into electronic form, and then hope to have copies spread throughout the world. All for free. Knowledge for knowledge’s sake. 

 

We don’t know why Audrey Longhurst, LN Yaddanapudi and the Online Distributed Proofreading Team pulled John Stokes’ book on syphilis off the shelf of Cornell University and put it into Project Gutenberg, but we are glad they did.

Reading Stokes’ book, we were struck by several things:

     
  • In 1917, Stokes expected the general public to understand subtle and complex issues.
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  • The level of discourse exceeds most of what is published today for doctors.
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  • The parallels between Lyme borreliosis and syphilis are remarkable.

Read complete article ...

Posted by Joel Spinhirne
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Tuesday, June 09, 2009

A Note to Doctors About Medical Journals

Blind acceptance of medical journal articles does not work any more.

The first time I talked to a doctor about Lyme disease in 2001, he said, “If it is not in a medical journal, it is not real.” My immediate reaction was an obvious and literal one: there are a lot of things real that are not in medical journals. But I knew what he was saying;  he wanted his information validated and he did not want to deal with noise from unreliable sources. His entry bar was publication in a medical journal, preferably a reputable if not prestigious one. I suspect he tended to think that way before going to medical school and that tendency was reinforced once he got there.

Although on that day my reaction was uneasiness with the doctor’s rigidity and close-mindedness, and despite knowing better, for the most part I used his standard for deciding what to believe about borreliosis for several years. If information was not coming from a journal indexed in PubMed or a similar source, for me it was questionable information. I was so biased that when shopping for a book on a medical subject, I generally would not buy it unless the author was an MD.

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Posted by Joel Spinhirne
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Friday, May 29, 2009

Quotes

A few quotes from medical journals say a lot about Lyme borreliosis

Science Contradicts the CDC and IDSA on Lyme Disease

The CDC and IDSA advocate underdiagnosis of Lyme borreliosis, ignoring much of the available science. A few quotes, some from guideline authors themselves, show the irrationality of requiring an EM rash or positive antibody tests (ELISA or Western Blots)  for diagnosis.

 

"The absence of significant antibody titers to B. burgdorferi is not uncommon in Lyme disease, especially in early disease. ...Although it was initially believed that patients with neurologic Lyme disease generally have antibodies to B. burgdorferi, this may not always be the case. ...We would advise that in an endemic area, the differential diagnosis of nonspecific muscle and joint aches without rash should include Lyme disease—even in the absence of antibodies to B. burgdorferi."

  Nadelman RB, Pavia CS, Magnarelli LA, Wormser GP. Isolation of Borrelia burgdorferi from the blood of seven patients with Lyme disease. Am J Med. 1990 Jan;88(1):21-6. PMID: 2294761  (Abstract)

 

Since coauthoring this paper, Gary Wormser has become a medical politician for the view that Lyme borreliosis is overdiagnosed. He regularly supports the opinion that antibody tests for B. burgdorferi are important, if not required, for diagnosis, contrary to his own research.

Research since 1990 continues to confirm the inadequacy of common Lyme disease tests:

 

"Lyme borreliosis patients who have live spirochetes in body fluids have low or negative levels of borrelial antibodies in their sera.”

    Tylewska-Wierzbanowska S, Chmielewski T. Limitation of serological testing for Lyme borreliosis: evaluation of ELISA and western blot in comparison with PCR and culture methods. Wien Klin Wochenschr. 2002 Jul 31;114(13-14):601-5. PMID: 12422608 (Abstract)

 

Similary, research has never established an EM rash as a predominant symptom:

 

"In our series, only 27% of children with neurologic abnormalities due to LD had a history of EM or arthritis."

  Bingham PM, Galetta SL, Athreya B, Sladky J. Neurologic manifestations in children with Lyme disease. Pediatrics. 1995 Dec;96(6):1053-6. PMID: 7491220 (Abstract)

 

Why does the CDC endorse EM rash or antibody tests as nearly essential for Lyme disease diagnosis?                    

Posted by Joel Spinhirne
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Sunday, May 03, 2009

Lyme Disease Secrets

The IDSA acts like they know things they don’t want to tell.

Bill Moyers said, “Secrecy is the freedom tyrants dream of”.  Unless there is a really good reason, decisions should not be made behind closed doors. For a published medical study, it is particularly hard to think of a good reason for secrets. Certainly, when it comes to an infectious disease, like, say, borreliosis, everyone should be telling everyone everything they know. When they don’t, something else is going on.  So, let’s ignore the merits and minutiae of the what the authors and supporters of the onerous IDSA guidelines for Lyme disease say. We are not going argue about their illogical statements and their dubious research. Instead, let’s just take a look at how many secrets they have. And, maybe ask why, if they are on the up-and-up, they need so many.  So, in no particular order, here goes…

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Posted by Joel Spinhirne
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Monday, April 27, 2009

Why No Ticks?

There is no good reason to think Lyme borreliosis is transmitted only by Ixodes ticks.

Most people visiting our website are probably surprised we don’t talk a lot about ticks.  Most Lyme disease information sources limit their discussion to infection from a tick bite. But until more is known about other types of transmission, it is irresponsible to say, or even imply, that Borrelia burgdorferi can  be transmitted only by tick bite.

The Blood Transfusion Question

Even some of the most staunch Lyme disease ideologues like Gary Wormser know this:  Survival of Borrelia burgdorferi in human blood stored under blood banking conditions. Nadelman RB, Sherer C, Mack L, Pavia CS, Wormser GP. Transfusion. 1990 May;30(4):298-301. PMID: 2349627 (Note that the big shift in turning Lyme borreliosis into a hard-to-catch, easy-to-cure dogma did not swing into full force until the early 1990s. Fortunately, the National Library of Medicine keeps records of pre-dogma papers.)

Read complete article ...

Posted by Joel Spinhirne
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Monday, April 13, 2009

IDSA Reviews IDSA

The Serano Group sends a statement to the IDSA.

We submitted a statement to the IDSA Lyme disease guideline review panel. Most borreliosis-aware readers are probably up on what’s happening, but here is a quick rundown. Basically, the Attorney General of Connecticut, Richard Blumenthal, is investigating the IDSA for possibly, just possibly, publishing their Lyme disease guidelines for their own financial gain and the convenience of infectious disease specialists who are members of their trade group.

The budget of the state of Connecticut wasn’t sufficient to take on so large a battle, so the AG agreed to a compromise that lets the IDSA review their deeply flawed guidelines using IDSA members to review what other IDSA members swear to. Yes, it was a little hard for us to be optimistic about the outcome. We did not plan to submit anything.

But, David Volkman, Ph.D., M.D. Emeritus Professor of Medicine and Pediatrics SUNY, Stony Brook, NY submitted a startlingly honest statement to the IDSA review panel. We had already done a fair amount of work looking into the IDSA’s bad science (only to be censored), so we thought it only right to support Dr. Volkman.

Let all hope that some members of the IDSA, especially those reviewing the egregious guidelines, get up some morning and decide to acknowledge reality.  Take a look.

Posted by Joel Spinhirne
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Thursday, March 05, 2009

Clarity in Borreliosis

This 2009 Margulis paper poses interesting questions on the importance of spirochetes in modern infectious disease.

In the scientific journal world, the best papers often get the least attention. Below is a recent example. Why aren’t we researching some seminal infectious disease issues posed here such as, why did AIDS, chronic fatigue, and Lyme disease all seem arrive at about the same time in the late 1970s and early 1980s? And, could the unfashionable spirochetes be at or near the center of this somehow?  Spirochete round bodies. Syphilis, Lyme disease & AIDS: Resurgence of “the great imitator”?; L. Margulis, A. Maniotis, J. MacAllister, J. Scythes, O. Brorson, J. Hall, W.E. Krumbein, and M.J. Chapman.  SYMBIOSIS V47, No.1, 2009.  This outstanding paper—a breath of fresh air after the thousands of Lyme borreliosis papers that seem devoted to reinforcing conventional dogma and little else—recently was published in the journal SYMBIOSIS.  There are many things we like in this paper:

     
  • the Lyme politicians are properly and perfunctorily dismissed early on
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  • the reality of the microscope is emphasized
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  • the reality of who is sick and dying is acknowledged
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  • citizen scientists are included as coauthors
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  • the work of the best borreliosis researchers is included
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  • biology, rather than medical culture, predominates

Some of the academic-speak, particularly in the abstract, might discourage you, but give this paper a close reading. It deserves the time invested.

Posted by Joel Spinhirne
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Wednesday, January 14, 2009

Heart of Darkness

Government agencies created the Lyme disease mess.

In the 1980s, U.S. government agencies made bad choices for setting Lyme disease policy. Either the big four of the medical establishment—health insurers, MD trade groups, pharmaceuticals, and hospitals—pushed the agencies, or the agencies themselves directed the policies. The lines are so blurred, it is hard to tell the driving force.

After public health officials gave the “Lyme disease” label to a mischaracterized set of Borrelia infections in the late 1970s, they soon began a campaign of error management, often finding success by formalizing their missteps. Their biggest mistake was they thought they could turn Lyme borreliosis into an easy to treat, geographically limited disease. Then they said tests were better than any facts could justify. Next, they were convinced they could control Lyme disease with a vaccine

They were appallingly wrong each time. Citizens have complained loudly, but not always effectively. Thousands more are kept ignorant of their infections and lives are left in shambles. Health care dollars are squandered as government agencies try to save face and somehow turn all this into a money-maker for private interests producing test kits and vaccines.

Read complete article ...

Posted by Joel Spinhirne
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