New Scientist: Chronic Lyme disease may be a misdiagnosis of chronic fatigue syndrome

[petrichor]

Where in the world did you get that idea? People who thought they had Lyme never had symptoms of Lyme?

Yes, many people who are diagnosed or self diagnose with Chronic Lyme don't have a history of having symptoms of lyme disease. It's just made on the basis of very questionable tests and misinformation on the internet.

What? Of course chronic Lyme has to be late stage Lyme - it's definitional. And most people with chronic Lyme don't present with symptoms of late stage...? Which symptoms? You mean classic B31 strain swollen knees and such? That's only one symptom of many. I don't know how to respond here. Late stage Lyme fails short term abx more often that early disseminated, and that fails between 10% and 20% of the time.

I'm talking about symptoms like Facial Palsy, rashes, swollen knees, and numbness. You can read about the symptoms here: https://www.cdc.gov/lyme/signs_symptoms/index.html. Late stage lyme disease antibiotic treatment fails in the regard that symptoms like pain and fatigue can persist afterwards, 10% to 20% of the time or more. That's what Chronic lyme or Post treatment lyme disease syndrome is. Short term antibiotics will effectively treat the other symptoms though. You also can't say that Chronic Lyme is definitional of Late Stage lyme given that we don't know the cause of Chronic Lyme, and they have different presentations.

Even if you don't like the CDC, as far as I can see they aren't getting anything wrong in the information in their website. They acknowledge that some researchers think that Chronic Lyme may be the result of a persistent but difficult to detect infection. They also may underestimate the time that it takes to recover from Chronic Lyme, but besides that the information seems legitimate. If you want another source you can read the page from the Open Medicine Foundation: https://www.omf.ngo/what-is-lyme-disease/.

If you want to spread questionable information on the internet, at least give sources for it.

 

[Milo]

Every time a Lyme story is shared, there is always the same story of big divide between 2 camps. It’s a sad state of affair because each camp’s position haven’t changed much and i have to agree with @petrichor that there is much misinformation out there about ‘it could be Lyme’ and ‘it could still be Lyme’. It remains that beyond initial treatments, those who go on getting a chronic disease do not make huge improvement as far as i know, any better than patients with ME.

I also side with the CDC that prolonged antibiotic therapy is not based on evidence, and can cause a whole host of problems.

The misinformation and rumors that are shared online prevent patients from getting care from mainstream medicine, pushes patients to alternative (and costly) and unscientific health care practitioners, while there is still no advance in mainstream medicine. It’s a sad state of affair and also begs the question over and over and over: what’s similar and what’s different between the groups, what’s similar with post Ebola syndrome, post-sepsis syndrome and so on, and whether onset matters once the infection leaves the body? (May it be bacterial, viral or fungal)

 

[duncan]

But these are not currently active Lyme disease patients - the paper says that the patients had had prior Lyme disease according to CDC criteria, had received "appropriate" antibiotic treatment, a

Right, @Medfeb , and there's the rub. According to CDC criteria, these Lyme patients still qualify as having active Lyme, ie, they are CDC Lyme compliant IgG positive on a Western Blot. Everything after that is innuendo and speculation, i.e. the post treatment qualifier which assumes Bb has been eradicated. But they don't know that. In fact, they've pretty much had to demonstrate these patients still test positive for Lyme according to the CDC's own rules, in order for them to become subjects of the study.

According to the Infectious Disease Society of America's position - and I believe CDC's at least historically - if patients received a short (e.g. 10-28 days) course of antibiotics, then they were appropriately treated and therefore no longer had active Lyme disease.

So, you know those IDSA authors? The ones going to court in Houston in February for alledgedly conspiring with Insurance companies? (well six out of eight authors, at least). If you read all their and their associates' studies over the years since 1976, you'll see that they more or less average out to a treatment failure rate of 10 - 20%. At least, that's the range the industry seems to have broadly accepted. Some of their studies demonstrate notably higher failure rates, some notably lower. I do not know why they seem to ignore their own historical findings anymore than I know why they endorse diagnostics that they should know will miss many, many patients infected by Lyme; anymore than I know why some appear to have dragged their heels to introduce more effective direct diagnostcs like amplified PCR.

The progressive action in the US appears to be with the HHS Workgroup on Tick Borne Diseases,

It started off pretty good, but slowly Past is overtaking Present once again. For instance. Shapiro being added is an ominous sign (despite a petition started by Lyme patients with 35.000 signatures denouncing his appt; this is akin to the NHS putting together an ME/CFS task force and appointing Wessley or Crawly to a senior slot), and the new head of the TBD WG is not a Lyme man, he is a Rickettsial expert, something @chrisb may be intrigued by.

suppose you get tbd as a child, but don't get any treatment. 40 years later, what could it look like? lots of symptoms? just a few? is it like meicc? is it distinctive?

Your body may have resolved it on its own. You may carry it but be asymptomatic (Burgdorfer wrote about asymptomatic Lyme patients way back in 1981 or so). Or you may have developed symptoms and been treated and gotten better. Or....you may be very sick.

are answers to the above paragraph known? are they consensus among smart members of the lyme community?

The short answer is that, as @rvallee suggested, no, many answers really aren't known. The research spigot is govt controlled, so the cherry money goes to re-enforcing old bad ideas and technologies and solutions. But progress is being made despite the politics, as indicated finally be three recent seminal studies from maverick academics impeccably credentialed which demonstrated that IDSA/CDC treatment protocols can and do fail to eradicate certain types of Lyme cells.

 

[Andy]

“I think most people who think they have chronic Lyme disease in the UK probably don’t,” said Sarah Logan of the Hospital for Tropical Diseases in London. “There’s so much stigma associated with chronic fatigue. Our treatments and support network [for CFS] are not great.” Logan says she sees at least two people a week in her clinic who have self-diagnosed themselves with chronic Lyme disease in the UK.

So basically she's saying "I think these people might not have a disease which the tests for aren't great, and actually might have something for which there are no tests, and I'm going to conflate that option to just chronic fatigue anyway. You can trust me, I'm an ExPeRt in all of this!"

And as for that last bit, she sees two people a week who have self-diagnosed themselves with chronic Lyme - the innuendo is that they don't but that isn't stated.

 

[duncan]

Yes, many people who are diagnosed or self diagnose with Chronic Lyme don't have a history of having symptoms of lyme disease. It's just made on the basis of very questionable tests and misinformation on the internet.

Yeah, I'm going to have to call foul on that one. If it's true, it is true on an exceptional basis. What do you imagine one of the main points of this article is all about? It's that symptoms of Lyme and ME/CFS frequently overlap. Lyme has many symptoms that can be confused with many diseases - which is why its nickname is The Great Imitator.

I'm talking about symptoms like Facial Palsy, rashes,

Facial palsy and EM happen fairly early. Numbness and swollen kness usually signify disease progression, but not necessarily.

You also can't say that Chronic Lyme is definitional of Late Stage lyme given that we don't know the cause of Chronic Lyme, and they have different presentations.

You are incorrect.

If you want to spread questionable information on the internet, at least give sources for it.

Pot, meet kettle. You are asking me to provide sources for rudimentary stuff. Every late stage Lyme patient learns this within the first couple of years of being sick and confirmed. This is basic stuff. You want me to go hunting for links, it's got to be challenging and worth it, not elementary. Believe me, or don't. But in an effort to show good faith, here is a link to a rebuttal of the IDSA's proposed NEW Lyme Guidelines draft. It's a little advanced, but it may prove helpful to you:

https://globallymealliance.org/gla-...a-aan-acr-2019-draft-lyme-disease-guidelines/

I also side with the CDC that prolonged antibiotic therapy is not based on evidence, and can cause a whole host of problems.

Whose evidence? The three Lyme RCT's 15 years ago? Where the variables were controlled? Perhaps you cannot find that evidence except in clinicians records because, when the RCTs were designed, "prolonged" was defined in a distinctively unprolonged manner. But I would agree we need more and new robust treatment studies.

The misinformation and rumors that are shared online prevent patients from getting care from mainstream medicine,

Mainstream medicine is failing up to 20% of Lyme patients, and millions get sick with Lyme. That's not even counting Babesiosis and Bartonella which also can go chronic and have poor diagnostics. TBDs are a testimony to medical failure at catastrophic levels. You may live in a climate not overly conducive to ticks, but that is likely changing. I live right at ground zero, and I see it all around.

 

[Mithriel]

The definition for CFS is so loose that many people with Lyme (and lots of other things) fit within it, but that is just more confusion, not an answer.

If someone gets swollen glands, sore throats and feels as if they have flu consistently after a delay up to days after exertion they have PEM and thus ME because they have a broken aerobic respiration system. If they do not have this ME is unlikely (we can't be definite because there is not definitive test)

The confusion has been about the politics, not anything medical.

Diseases are differentiated by their differences not similarities; infections were separated and treated successfully when they identified the bacteria involved not by calling it all fevers. Modern medicine, especially, BPS is obsessed with lumping everything together with one treatment, CBT/GET for them all.

There are charlatans out there (think LP!) who will diagnose Lyme by using pseudoscience but that does not mean that Lyme infection is a myth. Syphilis is the best known spirochaete infection and it is persistent, causing one set of symptoms when it is a new infection then disappearing only to reappear in a much worse form after years so chronic Lyme is a distinct possibility.

When doctors introduce confusion and neglect it is no wonder patients look elsewhere for answers.

 

[Dolphin]

Every time a Lyme story is shared, there is always the same story of big divide between 2 camps. It’s a sad state of affair because each camp’s position haven’t changed much and i have to agree with @petrichor that there is much misinformation out there about ‘it could be Lyme’ and ‘it could still be Lyme’. It remains that beyond initial treatments, those who go on getting a chronic disease do not make huge improvement as far as i know, any better than patients with ME.

I also side with the CDC that prolonged antibiotic therapy is not based on evidence, and can cause a whole host of problems.

The misinformation and rumors that are shared online prevent patients from getting care from mainstream medicine, pushes patients to alternative (and costly) and unscientific health care practitioners, while there is still no advance in mainstream medicine. It’s a sad state of affair and also begs the question over and over and over: what’s similar and what’s different between the groups, what’s similar with post Ebola syndrome, post-sepsis syndrome and so on, and whether onset matters once the infection leaves the body? (May it be bacterial, viral or fungal)

I am sceptical about whether a lot of those claiming to have long-term Lyme and tick-borne illness in the British Isles do have it. And it has depleted the numbers in the ME community so fewer people to donate, fundraise, volunteer, etc. I would be happier if I saw a reasonable number donating and fundraising for Lyme and related research but that rarely seems to happen but lots and lots gets spent on speculative treatments and the science doesn’t move on.

 

[Dolphin]

Here some people are linking HPV vaccine damage and Lyme Disease/tick-borne disease which I am particularly sceptical about: they believe they were damage by HPV vaccines with CFS-type symptoms. Then look for treatments and get tests for tick-borne illness at the Armin lab and regularly are positive. They then develop theories based on this e.g. the vaccine reactivated chronic Lyme.

 

[Andy]

Statement from Lyme Disease UK, https://lymediseaseuk.com/2019/10/09/lduks-reaction-to-lyme-disease-being-chronic-fatigue-syndrome/

The inference that patients would feel less stigmatised by a Lyme disease diagnosis than they would a Chronic Fatigue Syndrome diagnosis, is without substance. Both conditions are severely stigmatised with a lack of treatment options, if any, available on the NHS. Patients are often suffering debilitating symptoms that have completely disrupted their lives. They want a definite and correct diagnosis, adequate treatment and their lives back. Sufferers of both conditions deserve so much more from their doctors and experts.

 

[duncan]

I am sceptical about whether a lot of those claiming to have long-term Lyme and tick-borne illness in the British Isles do have ii

One way to get a feel for its prevalence is by checking out canine incidence. This is one method by which scientists are mapping Lyme's spread North deep into Canada. I would think they'd have these numbers throughout most of Europe, obviously including the UK.

 

[Cinders66]

Whilst it’s possible , even likely true that chronic Lyme is infact infection or Lyme triggered PVS or CFS, as I am familiar with SMC thinking and see this was a news story put out by them I don’t trust at all that this isn’t conveniently about burying another chronic illness.The idea of genuine, viral caused chronic Physical illness out there being failed is perhaps unpalatable in a uk context essentially of the medical conditions split into the organic and the functional. I simply dont trust the Uk on this area, If we remember GWS, doesn’t exist in the U.K. either and is under the same management and rehabilitation advice as CFS afaik. So if I was really trying to understand the genuine risk of chronic Lyme I would look to America and i think the uk Medical establishment behaviour in these Range of areas has bred distrust, legitimately.

Really we need research on PVS including those reporting Lyme initially to see what’s going on. I don’t think its stigma though that drives people into trying to unearth the biological explanation they know must be there and find a treatment when all they’re offered otherwise is the exercise they can’t do If pacing doesn’t bring relief. I myself looked into the Lyme possibility with some justification, our dogs had often had tics on them in our house, and it was the desperation or frustration as one newspaper article said, so surely more CFS research is the answer no one calls for ? I’m actually surprised SMC allowed experts to say CFS treatment available wasn’t good.

I understand the drs who treat proven Lyme might have legitimate views on it as not often going chronic. However surely in this area many frontline GPs are also failing to promptly diagnose in the acute phases, what then, what is the consequence ?
On both Lyme and CFS And GWS Too often in these areas It’s just people theorising and leaving it at that, rather than suggesting research to better understand and help these people .

Chronic Lyme disease may be a misdiagnosis of chronic fatigue syndrome

CFS, also sometimes known as myalgic encephalomyelitis, is itself a controversial condition: some think it involves immune system problems, perhaps triggered by an infection, while others believe psychological factors may contribute.

“I think most people who think they have chronic Lyme disease in the UK probably don’t,” said Sarah Logan of the Hospital for Tropical Diseases in London. “There’s so much stigma associated with chronic fatigue. Our treatments and support network [for CFS] are not great.” Logan says she sees at least two people a week in her clinic who have self-diagnosed themselves with chronic Lyme disease in the UK.

why don’t these drs who see lots of supposed CFS patients, presumably notably sick / impacted if they think they have ongoing infection, without good treatMent pathways, actually call for more to be done.

 

[Dolphin]

 

[duncan]

@Dolphin , you really trust any researcher who refers to ME/CFS as chronic fatigue? Also, do you know he's not referring to Armin labs? He's likely referring to IgeneX which uses two bands banned by the CDC because they are allocated for vaccine use, and that these two bands are the most specific to Lyme? So when he says Fallon found so many "didn't have Lyme" who tested positive thru this lab, likely what he is saying by the CDC 2T metric - which is classical circular reasoning? I'd need to re-read the entire study to be sure; it's been a while. But there may be merit to questioning whose method is more specific to Bb?

There are a lot of layers to this. It's not as easy as one might think, and it's disconcerting to me that these guys are talking as if there is a clear threshold where someone is definitely positive or negative for Lyme - a threshold that is not so much identified as it is contrived, at least to a degree. Lots of grammatical slight-of-hand going on - like ticks, it's endemic in much of LymeWorld.

 

[Lucibee]

Aha! My friends over at Lancet Infect Dis had a piece about it last month: https://www.thelancet.com/journals/laninf/article/PIIS1473-3099(19)30436-0/fulltext

The BMJ Open study by Cairns et al is here: https://bmjopen.bmj.com/content/9/7/e025916

The Irish Examiner did a special report on the topic a few days ago: https://www.irishexaminer.com/break...-problem-may-come-back-to-bite-us-955320.html

I'm not sure what the agenda of those at the SMC is here. LD is definitely on the rise, and that is a concern. Surely encouraging awareness and prevention strategies is the way to go here, rather than demonising those with late symptoms.

 

[ME/CFS Skeptic]

LD is definitely on the rise, and that is a concern. Surely encouraging awareness and prevention strategies is the way to go here, rather than demonising those with late symptoms.

I agree with that, but I also think there might be a real problem of overdiagnosis. Belgium is probably a good example of this. A few years ago the main ME/CFS expert in the country, Kenny De Meirleir, started diagnosing pretty much all his ME/CFS patients with chronic Lyme disease on the basis of some poorly validated German test for Lyme disease.

Lyme Disease UK argues that "The inference that patients would feel less stigmatised by a Lyme disease diagnosis than they would a Chronic Fatigue Syndrome diagnosis, is without substance." But in the case of Lyme disease, patients are told the exact cause of their symptoms is known. And many Lyme literate doctors argue that there is an effective therapy, mostly long-term antibiotics in combination with herbs. I think that is more attractive to patients than: "we couldn't find anything, you have CFS, nothing can be done except for exercise therapy and CBT."

 

[duncan]

I agree with that, but I also think there might be a real problem of overdiagnosis. Belgium is probably a good example of this. A few years ago the main ME/CFS expert in the country, Kenny De Meirleir, started diagnosing pretty much all his ME/CFS patients with chronic Lyme disease on the basis of some poorly validated German test for Lyme disease

Cannot - or should not - extrapolate from n=1. There are doctors projecting their biases through potential misdiagnoses in many medical realms. It's just unfortunate for patients when it happens because it can provide fodder for self-interest groups (eg BPS) whose goals do not necessarily align with reality or patients.

Lyme Disease UK argues that "The inference that patients would feel less stigmatised by a Lyme disease diagnosis than they would a Chronic Fatigue Syndrome diagnosis, is without substance." But in the case of Lyme disease, patients are told the exact cause of their symptoms is known. And many Lyme literate doctors argue that there is an effective therapy, mostly long-term antibiotics in combination with herbs. I think that is more attractive to patients than: "we couldn't find anything, you have CFS, nothing can be done except for exercise therapy and CBT."

No, patients in both communities are pretty much screwed, and for similar reasons too: Medical myths propagated through deliberate misinformation from relatively small cabals which yield disproportionately large influence on govt agencies and policies.

 

[Arnie Pye]

I'm not sure what the agenda of those at the SMC is here.

I think the agenda is to deny that chronic disease exists in as many health conditions as possible. It doesn't really matter what the condition is or what it is called. Anyone with a chronic disease is at risk of being declared mentally ill.

I've even read a suggestion that Stephen Hawking wasn't really physically ill, he was mentally ill and attention-seeking. This idea didn't gain any traction and I only saw it mentioned once, but the fact that it could be suggested at all shocked me. It must have been published somewhere fairly high profile or else I would never have read it!

 

[Andy]

The story has made it to the BBC now, https://www.bbc.co.uk/news/health-49998344

 

[ME/CFS Skeptic]

@duncan Honest question (I'm no expert at this subject)

Suppose patients have no recollection of a tick bite, the erythema migrans rash or Lyme disease at the beginning of their illness and they present wich symptoms that meet case definitions of CFS or ME. What basis could there be for saying to such patients that they do not have ME or CFS but chronic Lyme disease instead?

 

[duncan]

Suppose patients have no recollection of a tick bite, the erythema migrans rash or Lyme disease at the beginning of their illness and they present wich symptoms that meet case definitions of CFS or ME. What basis could there be for saying to such patients that they do not have ME or CFS but chronic Lyme disease instead?

They'd have to show something on their labs. If their labs show nothing suggestive of Lyme exposure, then imo they should not be diagnosed with Lyme. Too many other possible culprits should go into the differential diagnosis.

In the UK the C6 is the lab of choice by the NHS. I prefer the Western Blot, but it should embrace all 12 of the main proteins, not restricted to the 10 espoused by the CDC.

ETA: I also think they should make a genus-wide test. If they would, a lot of crazy stuff might ensue. I suspect strongly that that would blow the no-Lyme-here mantra in Australia out of the water. Why? Because they probably don't have Lyme sensu lato, but a borrelial variation - similar to what is going on with STARI is the midwest US. The question shouldnt start out as Do I have Lyme. the first question should be Do I have Borrelia, and if so, what species and strain.