March 31st NEJM: Netherlands Group Publish Study -3 months of Antibiotics Fails in Chronic Lyme

[Antares in NYC]

So I have a question. Why not take this study at face value? What if antibiotics really don't work, maybe because the participants really didn't have Lyme? It doesn't mean it's all in your heads, though I can see the worry that some people might jump to that conclusion.

But what if all the belief, attention, time, money being spent on chronic Lyme is actually contributing to the real cause and effective treatments continuing to be elusive?

That would be awesome if they actually did spend money to study chronic Lyme properly. Unfortunately, that is not the case. Over the last 20 years most official efforts by IDSA/NIH/CDC have overwhelmingly gone towards denying the existence of chronic Lyme, discard chronic patients as lunatics, and push the mantra that it must be something else despite positive tests. What's also extremely frustrating and nonchalant about the IDSA folks is how they tell you "it can't be Lyme", but never follow up to figure out what it could be then. You can translate that to "It's not my problem."

The only interesting research being done on Lyme in general, including chronic Lyme, is from universities and researchers, often with private donations.

The NIH has spent $1.5 million to research "subjective symptoms of post-treatment Lyme." All that money has yielded zero studies or research papers: http://forums.phoenixrising.me/inde...-research-money-for-ptld-lyme-is-going.42523/

In the end, all we got is the mantra that Lyme is magically "cured" after 2-4 weeks of oral antibiotics, and if that doesn't do it and you continue to be sick, it must be something else, or you are loony and it's all in your head.

 

[Antares in NYC]

Except this study is saying they probably don't work. I've seen and heard of many people going on antibiotics long-term and never getting any better on them, usually worse.

I hear your anecdotal evidence, but I also have anecdotal evidence of my own: I have met two people who recovered from years of Lyme hell by long term antibiotics, at about 18 months in average. One of them --a former nurse-- is now training for the NYC marathon!

All this study tell us that a couple of antibiotics don't work for Lyme if administered for 3 months. Most people that recovered from the deep dark hole of persistent Lyme did so after much longer terms of antibiotics.

 

[Victor Maalouf]

That would be awesome if they actually did spend money to study chronic Lyme properly. Unfortunately, that is not the case. Over the last 20 years most official efforts by IDSA/NIH/CDC have overwhelmingly gone towards denying the existence of chronic Lyme, discard chronic patients as lunatics, and push the mantra that it must be something else despite positive tests. What's also extremely frustrating and nonchalant about the IDSA folks is how they tell you "it can't be Lyme", but never follow up to figure out what it could be then. You can translate that to "It's not my problem."

The only interesting research being done on Lyme in general, including chronic Lyme, is from universities and researchers, often with private donations.

The NIH has spent $1.5 million to research "subjective symptoms of post-treatment Lyme." All that money has yielded zero studies or research papers: http://forums.phoenixrising.me/inde...-research-money-for-ptld-lyme-is-going.42523/

In the end, all we got is the mantra that Lyme is magically "cured" after 2-4 weeks of oral antibiotics, and if that doesn't do it and you continue to be sick, it must be something else, or you are loony and it's all in your head.

I don't buy that at all. By far the most vocal voices out in the media and on the internet are the LLMDs and others talking about how real chronic Lyme & Co. is. The only way a person even hears about the IDSA is from people demonizing them, like the Under Our Skin documentary.

There are so many LLMDs researching, trying to prove or figure out how chronic infections work. You have celebrities and tons of money flowing to these doctors. It's become a huge fad diagnosis and was only growing until maybe more recently.

Maybe the IDSA never followed up on what might be causing the symptoms because they deal with infectious diseases? If they rule infections out... yeah it does become someone else's problem. And when it does get picked up, it's not going to be called Lyme anymore, but CFS/ME, Fibromyalgia, MS, or whatever.

 

[duncan]

@Victor Maalouf , I don't know where you've been getting your info, but many would disagree with you. The IDSA school has an excellent and long-established relationship with the press.

For people trying to educate the public about mainstream Lyme misconceptions, it's been fighting the prevailing headwinds the entire way.

 

[Antares in NYC]

I don't buy that at all. By far the most vocal voices out in the media and on the internet are the LLMDs and others talking about how real chronic Lyme & Co. is. The only way a person even hears about the IDSA is from people demonizing them, like the Under Our Skin documentary.

There are so many LLMDs researching, trying to prove or figure out how chronic infections work. You have celebrities and tons of money flowing to these doctors. It's become a huge fad diagnosis and was only growing until maybe more recently.

Maybe the IDSA never followed up on what might be causing the symptoms because they deal with infectious diseases? If they rule infections out... yeah it does become someone else's problem. And when it does get picked up, it's not going to be called Lyme anymore, but CFS/ME, Fibromyalgia, MS, or whatever.

Whatever.
Thanks for your opinion and your apologetic stance towards IDSA. At this point, based on your very transparent position, I don't care about continuing a conversation with you.

I've suffered with this for years, and it has ruined my life. I have tested CDC positive consistently.

 

[Antares in NYC]

Some folks are posting some very good comments in response to the study:
http://www.nejm.org/doi/full/10.1056/NEJMoa1505425#t=comments

 

[duncan]

Check last year for weird Lyme study results, and anticipate more for the next couple of months. New IDSA Guidelines are scheduled for release late in 2016.

 

[Antares in NYC]

Check last year for weird Lyme study results, and anticipate more for the next couple of months. New IDSA Guidelines are scheduled for release late in 2016.

Very, very good point. I think it would be wise for ILADS and other Lyme patient associations to start getting ready, because IDSA will use their full media power on that release, just like they have done this week. The same day this Dutch study was published by the NEJM, there were articles in a dozen major publications (probably info leaked in advance to their media allies).

Patient advocates, ILADS and others better get media savvy and fast, or 2016 will look a lot like 2006 or 1999 when it comes to the IDSA guidelines.

PS: as you have also noticed, the thing that I find most appalling is that all these IDSA panel members that deny Lyme are constantly publishing research papers about persistent borreliosis, antibiotic resistant Lyme, protocols to kills disseminated Lyme, etc...

I assume that once they all get together to write their Lyme guidelines my guess is that they all show up in dark robes, drink from the skull of a goat, do their ritual chant to Baal, and then come up with ways to maximize denial of care for hundreds of thousands (maybe millions at this point) of extremely sick people in need for care.
(Sarcasm alert: maybe I have seen too many episodes of The Simpsons )

 

[Dufresne]

My fairly new roommate just asked me if I was still taking antibiotics for Lyme. So, yeah, studies like this and the articles that cover them aren't good for the cause.

Every so often we've to countenance another "nail in the coffin" paper. Yet all they really prove, again and again, is the typical 30-90 days of antibiotics doesn't do a whole lot for the chronically ill. Nothing new here, just another chance for everybody to reaffirm their position.

Those with way too much faith in the power of antibiotics and/or IDSA infallibility will interpret studies of this sort as proof bacteria are not the cause of the symptoms. While those on the other side say this is proof the bug, plus the co-infections and the syndrome as a whole are a hell of a lot tougher to treat. Yawn.

As frustrating as it is, treating chronic Lyme or ME/CFS is more an art. The cookie-cutter approach does not seem to work for patients and so it shouldn't be expected to work in these studies. That said, I do wonder if the NEJM would publish a study of this sort showing positive results.

Kind of interesting how they describe a large number of "adverse events" as "drug-related." Implying it's unethical to prescribe these drugs if nobody is getting better. And with the current state of the science it's difficult to argue otherwise. Of course another interpretation is that some of these people were herxing.

Like the clarithromycin-hydroxychloroquine combination, though. That's new.

 

[barbc56]

PS: as you have also noticed, the thing that I find most appalling is that all these IDSA panel members that deny Lyme are constantly publishing research papers about persistent borreliosis, antibiotic resistant Lyme, protocols to kills disseminated Lyme, etc.

This fact could also be turned around and interpreted that the IDSA does believes in long term lyme or post treatment Lyme. Otherwise why even study it? The IDSA position is that for most cases you don't need antibiotics past a certain point. That's not quite the same as saying Lyme doesn't exist or that it's psychosomatic. Perhaps other treatments become necessary after a certain point on antibiotics or like mecfs, there may only be symptom relief.

My theory and it is just a theory, is that that Lyme can be so damaging that some patients affected end up having severe downstream effects after the original infection has left. Post polio syndrome comes to mind. The original infection is gone.

The big difference between IDSA and LLMDs is what testing is valid and what treatment to use, not whether Lyme exists.

Who knows what the reality is but my interpretation is that researchers on both "sides", for lack of a better word, are trying to find out the answers. Unfortunately, like any medical progress this takes time and that is frustrating beyond belief.

As for me, I think I'll watch episodes of the Simpsons for my weekend entertainment. It's been a long time since I've watched it's so therapeutic. Thanks for mentioning them!

 

[duncan]

Only this isn't really what they are researching. The NIH, for instance, spends most of its Lyme $'s on early stage diagnostics. THIS is their emphasis.

Late stage, or downstream effects, are not receiving the same kind of attention. They haven't for years.

Worse, where extramural efforts surface, they are either ignored or gored.

Also, not only are many of these IDSA-types saying that Lyme does NOT exist post-treatment (or even without treatment - some claim it is self-limiting), they appear to be saying the symptoms are not bad; it's just that patients THINK they are bad, and the patients are wrong. (I referenced earlier in this thread a new NIH study that seems to say something along those lines).

Some of these studies are blatantly bad. They have, for me, the feel of pre-fab about them. Regardless, they are just in time to be able to reference for the new Guidelines.

 

[barbc56]

they appear to be saying the symptoms are not bad; it's just that patients THINK they are bad, and the patients are wrong.

I think there is room for interpretation. I don't feel that is what is being said. Who knows?

 

[duncan]

I think we will find out how liberal the interpretation can be in October.

 

[msf]

Some folks are posting some very good comments in response to the study:
http://www.nejm.org/doi/full/10.1056/NEJMoa1505425#t=comments

The fact that I made the same point about it as Stricker shows what a mess this study is. When lay people (including those without a basic grasp of statistics) can point out the flaws in your study design you know something isn´t right - could this be ILADS´ PACE?

 

[duncan]

And NEJM repeat Lancet's mistake?

Lorraine Johnson had a great critique of this study's results. Covered many bases.

 

[Mel9]

That would be awesome if they actually did spend money to study chronic Lyme properly. Unfortunately, that is not the case. Over the last 20 years most official efforts by IDSA/NIH/CDC have overwhelmingly gone towards denying the existence of chronic Lyme, discard chronic patients as lunatics, and push the mantra that it must be something else despite positive tests. What's also extremely frustrating and nonchalant about the IDSA folks is how they tell you "it can't be Lyme", but never follow up to figure out what it could be then. You can translate that to "It's not my problem."

The only interesting research being done on Lyme in general, including chronic Lyme, is from universities and researchers, often with private donations.

The NIH has spent $1.5 million to research "subjective symptoms of post-treatment Lyme." All that money has yielded zero studies or research papers: http://forums.phoenixrising.me/inde...-research-money-for-ptld-lyme-is-going.42523/

In the end, all we got is the mantra that Lyme is magically "cured" after 2-4 weeks of oral antibiotics, and if that doesn't do it and you continue to be sick, it must be something else, or you are loony and it's all in your head.

Three months seems way too short for a Lyme antibiotic trial

 

[Antares in NYC]

And NEJM repeat Lancet's mistake?

Lorraine Johnson had a great critique of this study's results. Covered many bases.

The problem Duncan, is that 200 media organizations are not going to parrot what Lorraine or Dr. Lewis, or Dr. McDonald have to say about this study. The IDSA folks, as you well know, know the media game very well. All you have to do is feed them pre-chewed media morsels they will publish without any checking for sources. In the Buzzfeed era of journalism, only sound bites win.

ILADS needs to get way better at the media game.

 

[duncan]

Agreed.

That's why we need people like Carl Tuttle.

We all have to do what we can. Personal comments as articles or studies are released.

Better, a centralized advocacy much like is considered (but not fully realized yet) for ME/CFS. I'm not talking about fractured local efforts, either.

We need a coordinated effort that addresses simultaneously legislative and media concerns. Chapters that educate clinicians on extramural studies, and on the inherent biases embedded in mainstreet research.

We need TBD evangelists that are unfettered by P&L considerations like those perhaps associated at times with ILADS.

 

[Dufresne]

If you have chronic Lyme or ME/CFS you probably have a whole lot more wrong with you than just a single infection. And these complicating factors vary from person to person, so it's not likely you'll have one treatment working for everyone. Most LLMD's are saying co-infections are the norm. And this is just the tip of the ice berg.

Designing studies with Koch's postulates in mind isn't going to get us anywhere.

 

[valentinelynx]

Why is this called a dutch article?

You are looking at the authors of the article I cited and linked to show that Auwaeter is doing work on antibiotics to treat persistent borrelia infection, not the authors of the Dutch article about failure of 3 months of antibiotics.