Researchers’ discovery may explain difficulty in treating Lyme disease (new treatments discussed)

[Hip]

I think it is odd to come to the conclusion that because the conflicts are not linear and well publicized, they just must not exist.

That is not the conclusion I have come to, but it will, I suspect, be the conclusion that most members of the general public and the medical profession come to when they read about Lyme disease, if there is no clear evidence available that demonstrates an insurance industry link. Without evidence, it will just looks like an unsubstantiated conspiracy theory.

In ME/CFS, the insurance industry involvement is clear and obvious. Researchers like Wessely, Sharpe and White even state their links to the insurance industry in their published papers. And people like Prof Malcolm Hooper and Margaret Williams have written detailed articles about the shenanigans of disability insurance companies have perpetrated in the world of ME/CFS. This stuff is very important, because it has had a hugely negative impact on ME/CFS research and the treatment of ME/CFS patients.

If the same story of insurance industry shenanigans is repeating itself in the Lyme world, then it is important that the details and evidence are available for all to see. Otherwise people may just see it as another unproven conspiracy theory.

Yeah, and also, Hip, your understanding of PTLDS and chronic Lyme is incomplete. No. It's worse than that. It's ballsy wrong.

Can you actually explain why you are saying my understanding is wrong? Or are not be able to provide any clarifying information?

 

[Antares in NYC]

As I understand it, post-treatment Lyme disease syndrome is the name given to all the symptoms that appear in some patients after an acute Lyme infection. Since we do not know what causes these symptoms, we do not presuppose that they are due a chronic Borrelia infection. Post-treatment Lyme disease syndrome could be due to a chronic low level Borrelia infection, or perhaps due to some autoimmune process triggered by the initial infection. Or indeed both.

So post-treatment Lyme disease syndrome is an appropriately neutral term that does not presuppose any particular etiology.

Unfortunately. Hip, there's nothing neutral about the "Post-treatment Lyme disease syndrome" terminology. This was established as part of the IDSA guidelines to recognize that many (many!) patients remain sick despite the initial abx treatment. But the term does not imply there's chronic Lyme. Au contraire! They invented this term to deny the existence of chronic Lyme. It's not clinically defined, and each of these "experts" attributes PTLDS to completely different reasons (autoimmune, psychological, even PTSD!*) Anything but borrelia persistence!

So you have hundreds of thousands of people getting infected with Lyme, never getting better after treatment, and sharing the same crushing CFS symptoms, but it can't be Lyme. No sir! The Occam's Razor principle apparently stops working with Lyme.

PTLDS is a loaded term. It was their way of acknowledging there's a huge problem with the treatment of Lyme (rather, they were forced to acknowledge it), yet still deny the existence of chronic Lyme at the same time.

*IDSA's own Eugene Shapiro claimed that lingering Lyme symptoms after treatment are probably caused by PTSD. No joke.

 

[duncan]

Two ships passing. .. No, THREE ships passing...lol. See what I just posted, too, please.

 

[Dufresne]

http://www.ct.gov/ag/cwp/view.asp?A=2795&Q=414284

"This agreement vindicates my investigation -- finding undisclosed financial interests and forcing a reassessment of IDSA guidelines," Blumenthal said. "My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists. The IDSA's guideline panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science.

Blumenthal added, "The IDSA's 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests -- in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies -- to exclude divergent medical evidence and opinion. In today's healthcare system, clinical practice guidelines have tremendous influence on the marketing of medical services and products, insurance reimbursements and treatment decisions. As a result, medical societies that publish such guidelines have a legal and moral duty to use exacting safeguards and scientific standards.

• The IDSA's 2000 and 2006 Lyme disease panels refused to accept or meaningfully consider information regarding the existence of chronic Lyme disease, once removing a panelist from the 2000 panel who dissented from the group's position on chronic Lyme disease to achieve "consensus";

• The IDSA blocked appointment of scientists and physicians with divergent views on chronic Lyme who sought to serve on the 2006 guidelines panel by informing them that the panel was fully staffed, even though it was later expanded;

@Hip I respect your wanting to find the smoking gun. I don't know if the money shot exists in the Blumenthal report, but I think there's enough there to back up the claim that Chronic Lyme is a "political disease".

Lobbyists essentially write law, but that doesn't stink enough anymore, nor does it when politicians become lobbyists. How about when the share of the company formerly headed by an incumbent vice-president increases tenfold because they're now the primary contractor involved in an insane war justified by said VP? And he accomplished this by planting a story and then citing it as proof to the American public (amongst other reprehensible acts). Then his "old" company is awarded no-bid contracts? You get the idea: nothing stinks enough anymore for authorities to take action and conduct proper investigations. Unless you have money changing hands with a quid pro quo contract written up, nothing untoward has happened.

 

[Wayne]

Just one story I've read of how entrenched IDSA's guidelines for Lyme treatment and the denial of chronic Lyme affect patients. -- A US forest service employee was bitten by a tick, and developed a classic bull's eye rash. The tick was saved and tested positive for Lyme bacteria. He was given the standard 4-6 weeks of antibiotic treatment.

When he didn't improve, his doctor, relying on the IDSA guidelines, concluded he couldn't possibly have had Lyme. If he did, the abx would have cured him. This is the kind of prevailing attitude that is so common in the medical community. They for the most part consider the conclusions of the ISDA as unassailable, even though they have enormous conflicts of interests.

 

[Hip]

Unfortunately. Hip, there's nothing neutral about the "Post-treatment Lyme disease syndrome" terminology. This was established as part of the IDSA guidelines to recognize that many (many!) patients remain sick despite the initial abx treatment. But the term does not imply there's chronic Lyme. Au contraire! They invented this term to deny the existence of chronic Lyme. It's not clinically defined, and each of these "experts" attributes PTLDS to completely different reasons (autoimmune, psychological, even PTSD!) Anything but borrelia persistence!

Well reading what the CDC say on their website about post-treatment lyme disease syndrome, the way they have written it, it does looks like they have "loaded" this term more towards the theory that PTLDS is more likely due to tissue or immune damage sustained during the acute infection, rather than the idea that it is due to chronic infection:

The exact cause of PTLDS is not yet known. Most medical experts believe that the lingering symptoms are the result of residual damage to tissues and the immune system that occurred during the infection. Similar complications and "auto–immune" responses are known to occur following other infections, including Campylobacter (Guillain-Barre syndrome), Chlamydia (Reiter's syndrome), and Strep throat (rheumatic heart disease). In contrast, some health care providers tell patients that these symptoms reflect persistent infection with Borrelia burgdorferi. Recent animal studies have given rise to questions that require further research.Clinical studies are ongoing to determine the cause of PTLDS in humans.

But they are not denying the existence of chronic Lyme.

And the fact that different researchers or experts have different opinions as to the cause of chronic Lyme, that is a good thing. It may indeed turn out that chronic Lyme is not caused by a chronic Borrelia infection, but is due to say immune factors or damage caused by the acute infection.

I myself tend to favor the idea chronic Lyme is caused by chronic Borrelia infection, but I recognize that nobody yet knowns the real cause.

 

[Antares in NYC]

But they are not denying the existence of chronic Lyme.

Right. Tell that to the many doctors being prosecuted in court across the US and Canada for treating chronic Lyme. The IDSA guidelines are being used as a hammer to put doctors out of business.

The CDC often talks from both sides of their mouth, but at the end of the day they endorsed the IDSA guidelines, which deny the existence of chronic Lyme. These guidelines are used as a powerful legal document to enforce what insurance companies cover or deny, and to prosecute doctors that don't comply.

 

[duncan]

It's worse than even denying chronic Lyme. It is characterizing individuals who received a chronic Lyme diagnosis as people who never had Lyme to begin with. It is recasting the label "chronic Lyme" to mean people who are deluded in their beliefs of ever having Lyme.

Antares is right. What is left for people who remain sick, at least arguably in the minds of the rank and file of most IDSA members and all that fall under their influence, is the phantom, PTLDS. This is just another inadequate label. If you look at studies that claim to drill down into the characteristics of PTLDS, those studies typically are little more than exercises in diminishing the severity of symptoms, and almost always suggest those slight, lingering symptoms will all fade in due time....

There is a concerted effort, and it is a coordinated effort, to downplay the severity of Lyme, and the threat Lyme poses. That effort is reflected in the US in the corrupted meaning of chronic Lyme, and in the empty shell game that is PTLDS

 

[Valentijn]

@Hip - Post-treatment Lyme is viewed by many as being a psychosomatic disorder, much like ME (post-viral), or post-cancer fatigue. The political situation is very much parallel to the situation we face when we fail to recover from whatever infection or other problem triggered our illness.

I think it largely comes down to certain interests refuting any chronic illness where there's enough of a lack of evidence for them to get away with it. There really doesn't seem to be much variation in their approach in denying each of those illnesses.

 

[Ema]

This document has a bit about the conflicts:

http://underourskin.com/sites/default/files/images/2010/04/IDSA_Investigation_Timeline_4-30-10.pdf

 

[Wayne]

It may indeed turn out that chronic Lyme is not caused by a chronic Borrelia infection, but is due to say immune factors or damage caused by the acute infection. ... I myself tend to favor the idea chronic Lyme is caused by chronic Borrelia infection, but I recognize that nobody yet knowns the real cause.

Hi Hip,

I think it's quite possible that an element of chronic Lyme may be due to immune factors, but I would guess it's a relatively small part. The fact that many Lyme patients have improved significantly with Rife therapy, and for that matter long-term abx--both of which are specifically intended to kill pathogens--would clearly seem to support chronic infections as the primary reason for chronic Lyme.

 

[paolo]

Well reading what the CDC say on their website about post-treatment lyme disease syndrome, the way they have written it, it does looks like they have "loaded" this term more towards the theory that PTLDS is more likely due to tissue or immune damage sustained during the acute infection, rather than the idea that it is due to chronic infection:


But they are not denying the existence of chronic Lyme.

And the fact that different researchers or experts have different opinions as to the cause of chronic Lyme, that is a good thing. It may indeed turn out that chronic Lyme is not caused by a chronic Borrelia infection, but is due to say immune factors or damage caused by the acute infection.

I myself tend to favor the idea chronic Lyme is caused by chronic Borrelia infection, but I recognize that nobody yet knowns the real cause.

Until now most doctors supposed to take care of Lyme patients deny the possibility of a persistent Borrelia low grade infection. This is a scientific prejudice, because -according to S. Donta (Boston University) and B. Fallon (Columbia University)- it is impossible to say if a given patient harbours some active spirochetes in his body or not.

Recent animal studies suggest that B burgdorferi can survive antibiotic treatments and persist in organs as brain, heart, skin. It was also reported that some patients had positive PCR for Borrelia even after prolonged antibiotic treatment. Nevertheless in my country -as in USA- persistent chronic Borrelia infection is not contemplated as a possible explanation for chronic symptoms and repeated antibiotics treatment, which have been proved to be beneficial in some patients, are denied.

 

[helperofearth123]

This is really great news! I'm still not convinced that my lyme infection which supposedly triggered my ME/CFS isn't still persisting. The difficult part though still is having a reliable enough test. Still, this is great progress, finally a drug that can kill it one fell swoop!

 

[Hip]

Right. Tell that to the many doctors being prosecuted in court across the US and Canada for treating chronic Lyme. The IDSA guidelines are being used as a hammer to put doctors out of business.

Are you sure about that? If the CDC says post-lyme disease syndrome exists, how can you be prosecuted for treating a recognized disease? What is the legal basis of the prosecution? There must be more to it that that. Possibly they were bending certain medical insurance coverage rules?

I have never heard of a doctor in the US prosecuted for treating ME/CFS, no matter what the treatment plan (antivirals, antibiotics, vitamin B12 injections, etc).

Until now most doctors supposed to take care of Lyme patients deny the possibility of a persistent Borrelia low grade infection. This is a scientific prejudice, because -according to S. Donta (Boston University) and B. Fallon (Columbia University)- it is impossible to say if a given patient harbours some active spirochetes in his body or not.

Sure, it is impossible to say if the patient has spirochetes in his body or not, but even if they do have these spirochetes in the body, that unfortunately does not prove that the spirochetes are causing the symptoms of chronic Lyme. The spirochetes could be there, but not causing any symptoms.

The same situation is true in ME/CFS: many ME/CFS patients have been shown to have chronic enterovirus infections, but that does not prove that enterovirus is the cause of ME/CFS. It takes a lot more work to prove these things.

Now myself I think that a chronic spirochete infection is the most likely explanation for the chronic Lyme. We know that the spirochete infection of syphilis can cause chronic infection and long term neurological and psychological symptoms, so this suggests Borrelia may also be able to do this. However, until we can prove this, it unfortunately remains just one of several theories of what causes chronic Lyme. A lot more work needs to be done to see if it can be proved that Borrelia causes chronic Lyme.



In general, I wish that more researchers explored the possibility that chronic low level infections are the cause of diseases. I suspect many more diseases will eventually be proven to be caused by chronic low level infections. Just recently, a very interesting new association has been made between chronic lower back pain, and a spinal disc infection with anaerobic bacteria like Propionibacterium acnes.

More work needs to be done to prove that these anaerobic bacteria are indeed the cause of lower back pain; at the moment it is just an association rather than a causation that has been demonstrated; but this example shows how infectious pathogens may very well be behind many health conditions.

 

[Helen]

Recent animal studies suggest that B burgdorferi can survive antibiotic treatments and persist in organs as brain, heart, skin. It was also reported that some patients had positive PCR for Borrelia even after prolonged antibiotic treatment

A single -case report; I was treated during a year with pulsed Doxycycline and Azithromycin which had some effect on my Neuroborreliosis with all the typical symptoms. When I tried to stop the treatment I got much worse, but it didn´t cure me either. A Westernblot in late October was strongly positive (8 bands and 16 points) and the IgM and IgG were slowly increasing although the treatment. It´s not only in rhesus monkeys that Lyme bacterias might persist...

Since February I have had IV antibiotics for 12 weeks, which ended 10 days ago and I am now feeling better, crossed fingers, than I did for years. It is a medical scandal how Lyme is denied, particularly late stage Lyme, among too many doctors. I have been fighting hard, like many of you do, to get proper treatment. I also learnt that there are many doctors in my country who well knows how to treat but they do not dare to, except for themselves or their family members.

 

[Antares in NYC]

Are you sure about that? If the CDC says post-lyme disease syndrome exists, how can you be prosecuted for treating a recognized disease? What is the legal basis of the prosecution? There must be more to it that that. Possibly they were bending certain medical insurance coverage rules?

You seriously didn't know about this? Google it. They have been quite voracious in their hunting of doctors that stray from these guidelines. It got so bad that several states recently passed laws protecting doctors that treat Lyme patients outside the IDSA guidelines.

Like I said before, insurance agencies are prosecuting Lyme doctors using the IDSA guidelines as a legal hammer to disbar them. In most of these trials, members of the IDSA panel on Lyme guidelines themselves appear as expert witnesses (Shapiro, Wormser, etc) in the case against that specific doctor. Every day there's a new doctor somewhere in the States about to lose his/her license and go bankrupt for treating Lyme patients outside the narrow guidelines set by the IDSA. It got so bad that individual states passed laws protecting these doctors and their practices. It has been a witch-hunt, and the lawsuits are almost always brought up by insurance companies.

And you can point at any page on the CDC website that supports chronic, persistent, refractory or "post-treatment" Lyme. It means nothing. I can point to you hundreds of peer-reviewed studies funded by the NIH, on the NIH website, all demonstrating the antibiotic resistance of the borrelia spirochete. None of these are ever considered by those setting the guidelines. Baffling? Indeed. Shady? Beyond.

It's not what the science shows, but what the gatekeepers tell you it is.

PS: seriously, check out the documentary "Under Our Skin"; it covers three of these trials, and you can see with your own eyes several members of the IDSA Lyme panel testifying against doctors in court. Insurance companies also bring outrageous lawsuits to these doctors so they are effectively put out of business. BC/BS sued Dr. Jemsek for hundreds of millions of dollars, for instance.

 

[Hip]

You seriously didn't know about this? Google it. They have been quite voracious in their hunting of doctors that stray from these guidelines. It got so bad that several states recently passed laws protecting doctors that treat Lyme patients outside the IDSA guidelines.

I just tried Googling now, and could not find any instance of a Lyme doctor who was prosecuted. The Google search I used is this one. There was one case of Lyme doctor prosecuted for tax fraud, etc, but that's all I found.

 

[duncan]

I think Antares may have been, at least in part, referring to these doctors being persecuted, being investigated by state medical boards simply for not observing IDSA Lyme dogma (although the stated pretense for the investigations and proceedings might be something different). Doctors have had their license suspended and even revoked.

Doctors are harassed by not just medical boards, but by insurance providers (through dropped coverage at the very least) and even other doctors who remain loyal to mainstream dogma to a repulsive degree (through reports to medical boards and insurance providers). I believe lawsuits have also been levied against them.

LLMD's and even IDSA members who break ranks have to look over their shoulders simply for extending abx therapy beyond the standard recommended timeframes, and that is frightening.

 

[Hip]

@duncan
It makes no sense to me that doctors would be investigated by state medical boards for prescribing antibiotics, when ME/CFS doctors have the freedom to experimentally prescribe all sorts of drugs.

 

[Antares in NYC]

It makes no sense to me that doctors would be investigated by state medical boards for prescribing antibiotics, when ME/CFS doctors have the freedom to experimentally prescribe all sorts of drugs.

I feel you are just being obtuse for the sake of it. I don't have the mental energy to prove everything you keep refuting. Doctors in the USA and Canada are being persecuted, investigated, their medical licenses removed, their practices shut down for treating Lyme patients outside the established guidelines. You don't have to believe me. I don't have to look for news reports for you all day.
It doesn't make any sense that this is happening, true. But it happens so much so that states like New York had to pass laws protecting them from this witch hunt. You don't have to believe me, and frankly I don't think I care at this point if you do.