UK Times and Independent on ME misdiagnosed as Lyme disease, August 2023

[Sly Saint]

Independent:
Clinics ‘cash in’ by wrongly diagnosing disease Justin Bieber suffers from (Lyme)

Private clinics are “taking advantage” of vulnerable patients in Britain by misdiagnosing them with Lyme disease so they can prescribe “profitable” courses of treatment, an expert has warned.

Dr Matthew Dryden, an NHS consultant microbiologist, said private clinics send tests to overseas laboratories which often “provide the result they want, a positive result for Lyme”.

But Dr Dryden claimed these clinics were putting “profit over care” and in many cases, especially among younger people, patients were actually suffering from diseases like chronic fatigue syndrome (ME).

He explained a “profitable” medical industry had materialised in the United States due to insurers covering costs of Lyme disease treatment, but not that of conditions like ME, which have similar symptoms.

Writing in The Times, Dr Dryden said: “Lyme disease is being misdiagnosed by private concerns using unvalidated diagnostic tests. These clinics and laboratories are taking advantage of vulnerable and desperate people with chronic symptoms.”

Lyme disease is an infectious disease caused by the bacteria Borrelia burgdorferi, and it is sometimes known as Lyme Borreliosis. Patients are often unaware they have been bitten, making diagnosis difficult.

https://www.independent.co.uk/news/...lla-hadid-lyme-disease-symptoms-b2400985.html

 

[JohnTheJack]

Merged thread

The Times:

Letter from I think this Matthew Dryden (link to page on Twitter) in Times this morning:

False lyme disease
Sir, Christopher Herbert ( Thunderer, Aug 25; letters, Aug 26 & 28) makes a plea for the NHS to wake up to the serious risks of Lyme disease and for the government to recognise it as such. Both do that. The nub of the problem is so-called chronic or pseudo-Lyme. Chronic fatigue syndrome (CFS), aka ME, is poorly understood and debilitating, triggered by infections including Covid but rarely Lyme. The mechanism of CFS/ME is unknown and there are no effective treatments. On the East coast of the US where Lyme is common, the health costs of those with CFS/ME were not covered by medical insurance but they were covered if it was diagnosed as chronic Lyme disease. A profitable medical industry grew up around this. Patients are treated with dangerously long courses of antibiotics and other drugs. Serious treatable diagnoses are sometimes missed. The phenomenon of pseudo-Lyme and its treatments have spread across the Atlantic to mainly Anglo-Saxon countries and even to Australia, where Lyme disease has never been found. Lyme disease is being misdiagnosed by private concerns using non-validated diagnostic tests. These clinics and laboratories are taking advantage of vulnerable and desperate people with chronic symptoms . More research is required into the mechanism of CFS/ME and its treatment. While ticks are increasing and real Lyme disease is certainly prevalent, the arthropod and its bacteria cannot take all the blame.
Dr Matthew Dryden, MD, FRCPath Longparish, Hants

And then article reporting the letter.

Private clinics ‘cash in with false Lyme disease diagnoses’
(£)https://www.thetimes.co.uk/article/private-clinics-cash-in-false-lyme-disease-diagnoses-jg87psfkz

 

[InitialConditions]

I think this is a real problem. You can get a positive Lyme disease test if you keep trying. And the tests are not accurate.

 

[JohnTheJack]

Thought this was an interesting point, given the history of links between BPS crowd and insurance companies.

On the East coast of the US where Lyme is common, the health costs of those with CFS/ME were not covered by medical insurance but they were covered if it was diagnosed as chronic Lyme disease.

 

[duncan]

You can get a positive Lyme disease test if you keep trying.

Can you, if you stick to FDA-approved? Although there are gougers for sure, I'm not clear on how large this specific problem is. Lyme patients aren't all rubes; people know how to research, and now more than ever before, they do.

And the tests are not accurate.

Period. Here is the real problem. This is a two-sided coin. Show me a Lyme test that is commonly applied and reliably demonstrates current infection, or can readily disprove one. It doesn't exist.

Articles need to be balanced, especially if there is cause for concern all around.

Thought this was an interesting point, given the history of links between BPS crowd and insurance companies.

Chronic Lyme covered by insurance companies?? Not usually. LLMDs typically don't take insurance. ME/CFS isn't usually covered either in my experience, but it is more frequently than chronic Lyme. Why? Little risk to ME/CFS clinicians associated with treating with long term abx. With chronic Lyme, physicians who treat with abx beyond 21 days or so can face hearings and even lose their license.

 

[Dolphin]

Thought this was an interesting point, given the history of links between BPS crowd and insurance companies.

I’m not sure the links are that strong with health insurance companies (like Bupa) more disability insurers. A confusing term is Permanent Health Insurance which does have health in it but it’s a type of disability insurance.

 

[Dolphin]

I don't have another link for this that discusses the documentary in English

Documentary: Undercover in German Lyme Clinics (2017)

Short summary:
Several totally healthy danish journalists as well as 4 well known totally healthy danish tv-personalities sent their blood samples to both Arminlabs and BCA Clinic in Augsburg.
They were all found positive for Lyme disease with the Elispot test and treatment was recommended to them.

Same thing for a severely ill danish lady who had been diagnosed with ALS in Denmark:
She went for a second opinion to BCA in Augsburg and was told she had lyme disease and could be cured.

https://forums.phoenixrising.me/threads/documentary-undercover-in-german-lyme-clinics.55493/

 

[Ash]

In the NHS it’s very difficult to get the second test you need if your infection is outside a certain period of duration. The first test is difficult enough to get but if that comes back negative which is likely if you test too early or too late, you’ll have trouble getting either a repeat or a second stage one which has to be done in only certain labs. The second stage one is meant to be more likely to catch later stage than the first test, which I hear isn’t usually much use at all for that.



I got the second stage test eventually many years on from the bite. It was negative.

The NHS cons Dr who was not really interested in testing or treating me for anything-because of in his words “your chronic fatigue”- still said you can’t rely on a negative especially at this stage even with this test. Which he said was the only reliable one, at least for positives. He gave me a month of doxy antibiotics but I assume that was for placebo, because that’s for the recently bitten and would be unlikely to work now and because he thought I would fall for that, CFS an all. But I may be being overly sceptical here because I’ve seen other Drs recommend this. Anyway I took them, felt terrible, incredibly depressed whole month and bit after not normal for me, but about 4days into the course my brain fog lifted and I was sharper than I thought possible. I was able to make four long complex phone calls per day without PEM every other day for 3weeks. I still felt extremely possibly more than usually fatigued physically and spent the month in bed made my phone calls there.

Even though it is more than possible for me to have a tick borne illness, and I don’t think the NHS understands or cares to understand the condition too well in general, I would not trust a private test sent somewhere in Europe or some alternative new lab test here because I’ve literally never heard anyone who had one say it came back negative.

Rock and a hard place I think.
Mockery, or scammery.

 

[Dolphin]

I don't have another link for this that discusses the documentary in English

Documentary: Undercover in German Lyme Clinics (2017)

Short summary:
Several totally healthy danish journalists as well as 4 well known totally healthy danish tv-personalities sent their blood samples to both Arminlabs and BCA Clinic in Augsburg.
They were all found positive for Lyme disease with the Elispot test and treatment was recommended to them.

Same thing for a severely ill danish lady who had been diagnosed with ALS in Denmark:
She went for a second opinion to BCA in Augsburg and was told she had lyme disease and could be cured.

https://forums.phoenixrising.me/threads/documentary-undercover-in-german-lyme-clinics.55493/

This is a thread on a paper on the results from Armin labs, which promotes itself a lot for Lyme and tick-borne infections in Europe.

There were similar high rates of diagnosis in both patients and controls

Human enteroviral infection in fibromyalgia: a case-control blinded study, 2022, Armin Schwarzbach et al

https://www.s4me.info/threads/human...ded-study-2022-armin-schwarzbach-et-al.28644/

 

[duncan]

.
They were all found positive for Lyme disease with the Elispot test and treatment was recommended to them.

Same thing for a severely ill danish lady who had been diagnosed with ALS in Denmark:
She went for a second opinion to BCA in Augsburg and was told she had lyme disease and could be cured.

Oh dear.

In the US, in North Carolina, many CDC-approved and FDA-approved tests for Lyme were positive for patients, and later recommended to be discounted because someone maintained there weren't enough of the right kinds of ticks in NC. Which is just silly. This blade swings both ways.

Who are the good labs in this? Seriously, which labs are good? NHS? NIH? Which tests? The 2-Tier? MTTT? C6? Better know why they're embraced, otherwise there is very little difference between those tests and entities and what you might find in Germany or anywhere. You simply may be exposing yourself to two different types of misleading results.

If you're going to try to point out the bad, you better be willing to keep that finger pointing. And you better be willing to point at labs or institutions you might assume were immune from calumny.

No one likes to be grifted. No one. So why do you imagine there are so many pissed off well-informed Lyme patients?

Articles like this seem to me little more than propaganda if they're not balanced.

 

[Wyva]

This is a constant issue in my group, to the point that I had to include the word "Lyme" in my moderation alerts. Because some people there are convinced they have chronic Lyme and they pretty aggressively try to convince others too that it is actually Lyme disease they have, not long covid or whatever. And suggesting Lyme as an option in itself wouldn't be an issue, the problem is they keep saying that only a certain private doctor can properly diagnose it, everyone else will say you don't have Lyme, so they obviously don't know how to diagnose it. And thus, everyone in my group who goes to this doc ends up coming back with a Lyme diagnosis. Long covid is explained too, that it is not actually long covid, but covid triggered your past Lyme infection (an infection people hadn't known about before). Or that the infection is inherited, you don't actually need to be infected personally, you may not even know about it, etc etc. Everything has an explanation.

For shady Lyme tests we have the company DualDur here, also mentioned on S4ME previously, their website is the Lyme Diagnostics one. I wrote about them here. I don't remember the details now but basically it wasn't even a medical or healthcare-related company first but one making lamps (!). They were supposed to be a lamp making company even when they applied for EU funds for their Lyme test. Which they managed to get because such pecculiar things (in who gets the EU funds and for what) frequently happen here, we are the land of misused EU funds, and even an anti-corruption investigative journal wrote about this company because of this. They widely promoted themselves as some groundbreaking Lyme diagnostics company in the media a couple of years ago but never actually published anything about it.

 

[InitialConditions]

what if you have an ME diagnosis and then a Lyme diagnosis? do you still have ME?

eg

https://www.hellomagazine.com/healt...ine-mccutcheon-health-update-me-lyme-disease/

Yeah, I see a lot of this. Seems highly unlikely. Occam's Razor.

 

[rvallee]

All of this is a direct consequence of medicine's denial. None of this should be a surprise to anyone, you can't deny major illnesses like this without causing havok. Literally every problem here isn't just medicine's responsibility, buts its creation and perpetuation.

But I'm really confused about the "cashing in" angle. Do clinics in the UK directly sell those treatments? Here in Canada they would be dispensed by pharmacies, so it would be very hard to have some conflict of interest over this.

Although I don't see much point in separating by pathogen, and the idea that Lyme could not persist in the body doesn't make sense. Based on what? Wishes and beliefs yet again? And I'm not just talking about Lyme. It'd be pretty foolish if for some reason the idea that viral infections can do that, but bacterial ones can't. Doesn't make sense.

 

[duncan]

what if you have an ME diagnosis and then a Lyme diagnosis? do you still have ME?

I did. I do.

Yeah, I see a lot of this. Seems highly unlikely.

Why? Did the Lyme kill off the ME/CFS? Does that mean I need never worry about getting cancer as Lyme will eradicate it?

People can have more than one disease at the same time. I've three at least right now. Four.

 

[InitialConditions]

Why? Did the Lyme kill off the ME/CFS? Does that mean I need never worry about getting cancer as Lyme will eradicate it?

I am talking about people who search for a diagnosis and then get a diagnosis of ME and Lyme. Often there is no evidence of ever being bitten, or of an acute Lyme infection.* I don't know the specifics of your case.

* I was speaking to someone just recently who got unwell after a vaccination, but now thinks it might be Lyme because they live in an area where Lyme might be present.

 

[InitialConditions]

I did. I do.


Why? Did the Lyme kill off the ME/CFS? Does that mean I need never worry about getting cancer as Lyme will eradicate it?

People can have more than one disease at the same time. I've three at least right now. Four.

That's not what I was saying. Of course you can. I am talking about getting both diagnoses for the same set of symptoms. Not when one clearly follows the other, with a gap in time (particularly if there's evidence of a tick bite / acute infection).

 

[duncan]

I am talking about people who search for a diagnosis and then get a diagnosis of ME and Lyme. Often there is no evidence of ever being bitten, or an acute Lyme infection.* I don't know the specifics of your case.[/QUOTE

If you're feeling inexplicably sick, don't you go to a doctor searching for a diagnosis? Don't most?

Often there is no evidence of ever being bitten, or an acute Lyme infection.*

Often there is. Regardless, Lyme disease is a clinical diagnosis. It's based on symptoms. You look to support that diagnosis serologically, but it's all just a crap shoot. The doctor still has to go through the differential diagnosis routine, and depending on her leanings, she'll make a call.

Are there some who capitalize on Lyme fears? Yes. Just as there are with ME/CFS. Name me a medical discipline where this doesn't happen. It's good to draw attention to grifters. I'm just saying it's also important to relay context.

 

[duncan]

That's not what I was saying. Of course you can. I am talking about getting both diagnoses for the same set of symptoms. Not when one clearly follows the other, with a gap in time.

Sure you can. PEM aside, tell me the difference between Lyme symptoms and ME/CFS symptoms. They can be identical. It's easy to appreciate how doctors can confuse one for the other. Compound that with dismal diagnostic protocols and solutions, and one's own immune abrogating Lyme responses.

It's ugly out there.

 

[InitialConditions]

PEM aside, tell me the difference between Lyme symptoms and ME/CFS symptoms.

That's exactly my point! I don't think we can trust the tests—as has been shown—so its a very hard diagnosis to make, unless there is clear evidence of a bite / rash / acute infection—although I know these are not always present.

How did you get your Lyme diagnosis?

 

[Mij]

I also have an issue with M.E 'tests' and whether they are accurate.

I feel it relies and based on the knowledge, experience of the physician and history records of the patient.