UK CFS Patient Rediagnosed with Lyme

[TiredSam]

Articles like this are usually for publicity, either to further a career as a burlesque dancer, promote a self-help book about a miracle cure, or whatever. In this case she is trying to raise money - both the pictures have a "Just Giving" stamp on them, and there is a link to where you can donate in the article. Very kind of the Daily Mail, but when any money donated is likely to end up in the pocket of some quack I'll give it a miss I think.

Rachel, the sufferer, isn't quoted at all in the article, just her mother. In fact the journalist writes

Rachel Gordon, 27, who is believed to be from London

So the journalist has spoken to the mum of someone who apparently lives in a tent somewhere but the mother has forgotten where her daughter's from or the journalist thinks she remembers the mum said London or something but anyway she's ill, pretty, and wants some money and there's a tent involved and winter's only 5 months away so we'll run it.

This from the DM's "Health Reporter" FFS.

 

[Woolie]

From the article:

Julia Knight, from Lyme Disease UK told MailOnline: 'Some Lyme disease sufferers appear to suffer from mould toxicity, which means their bodies are unable to detoxify toxins released by mould.

So Lyme Disease UK is comfortable describing the disease as something that renders you unable to 'detoxify' toxins released by mould. I'm a bit concerned by that. What this group says impacts on ME advocacy, as ME is often grouped together with Lyme.

I still haven't got clear in my head the idea behind chronic Lyme, and its relationship to ME, but the two seem to have similar symptoms, but chronic Lyme goes one step further in proposing a very specific disease mechanism to account for the symptoms. It seems that some people who get this diagnosis can report a specific tick bite or past borrelia infection, but others can't, and in those cases, the Lyme part is more by inference.

So its sort of ME/CFS wth a specific infectious trigger - that of borrelia? Is that right?

 

[duncan]

I still haven't got clear in my head the idea behind chronic Lyme

It's just late stage Lyme. Think late stage syphilis. Remember when it could not be cured? Late stage Lyme is the same thing for as many as one in 5 sufferers - some think more. (Both are spirochetes, btw). People put too much weight behind the word chronic; its use shouldn't matter, but it does, and for reasons that imo implicate some revered researchers.

This would be no big deal except for 2 developments over the last 20 or so years: Because Lyme can be a clinical diagnosis without serology, apparently some doctors misused the term and applied it to patients wrongly. Secondly - and for me the larger issue - a concerted marketing campaign was launched that has attempted to discredit both the concept of chronic Lyme, and the patients to which it is attached. I have seen, literally, papers by highly respected mainstream Lyme doctors who define patients with chronic Lyme as - definitionally - people who have nonspecific symptoms who never had Lyme to begin with. I do not know if this has ever been done in medicine before.

Chronic Lyme is simply Lyme whose symptoms won't readily resolve with abx. I prefer to simply avoid the tainted term, and refer to it as late stage Lyme refractory to treatment.

and its relationship to ME,

It is often mistaken for ME. Steere and company - Lyme pioneers - back in the early '90's said Lyme caused CFS and Fibromyalgia, but that refrain changed when they doubled down on the "hard to get, easy to cure" - tag line, and most IDSA types simply chorused that the symptom cluster associated with Lyme wasn't all that bad - little more than the aches and pain of daily life.

chronic Lyme goes one step further in proposing a very specific disease mechanism to account for the symptoms. It seems that some people who get this diagnosis can report a specific tick bite or past borrelia infection, but others can't, and in those cases, the Lyme part is more by inference.

Chronic Lyme is infection of species and strains of Borrelia. There are several species. There are over 300 strains. Not all are pathogenic. Not all can be picked up by current diagnostics. Because not all can be found through serology, diagnosis can be simply clinical. Do you live where there are ticks? Were you bitten? Did you have a rash? What are your symptoms? A problem is apparently that some doctors took advantage of this for financial gain, but I suspect it is not to the degree the marketing campaign painted it (for a number of reasons).

So its sort of ME/CFS wth a specific infectious trigger - that of borrelia? Is that right?

Close. If it is chronic Lyme, it is not just a Borrelia trigger. All the symptoms are caused by persistent Lyme. Lyme persists in privileged sites despite antibiotics - just as syphilis used to. But Borrelia is a much bigger nut to crack than syphilis, so this would not be surprising.

And then there is the small thing of way back in 1983, in a seminal study, arbitrarily bifurcating Lyme patients' symptoms into Major and Minor symptoms. "Major" symptoms pretty much were overt and could be seen by the researchers, and would usually resolve with antibiotics. "Minor" symptoms pretty much were subjective; most were not visibly apparent, and they often would not resolve with abx. These symptom clusters were/are very similar to ME/CFS symptoms.

Most clinicians have no idea that what they think is Lyme - its features and characteristics and diagnostics - is believed by many to be a misrepresentation. That this mainstream version of Lyme may be little more than a plausible story cobbled together with strategic facts and half-truths and misleading statements.

 

[duncan]

What this group says impacts on ME advocacy, as ME is often grouped together with Lyme.

Just as CFS patients historically have been questionably represented by the press at times, so too have Lyme patients. Mold sensitivities have been reported by both communities. I do not know how this works as I do not suffer from a mold sensitivity.

It could be this person has ME/CFS and does not have Lyme. It could be she has Lyme. Or she has something altogether different.

I found this story curious because of the diagnostic turn it took. How could she get from ME/CFS to Lyme with any sense of confidence unless she got a new case of Lyme, or unless she had not been tested for Lyme to begin with?

There are answers to this - for instance - she simply tested negative for Lyme earlier, even though she had it. This happens with appalling frequency.

I was curious what other ideas ME/CFS patients might have.

 

[Trish]

I am trying to understand the chronic Lyme situation a little.

Could it be said that there are several possible things that can happen after someone catches Lyme from a tick bite?

1. They get diagnosed early correctly, have antibiotic treatment which clears the infection and they recover, though the process may be lengthy and include complications.

2. They get diagnosed early correctly, have antibiotic treatment which does not clear the infection and the infectious organisms stay in the system but are hard to verify using current tests, and they have persistent symptoms from the continued presence of live organisms - Chronic Lyme. This may be misdiagnosed as ME.

3. They get diagnosed early and correctly, have antibiotic treatment that kills off the organisms, so the infection has gone, but they stay unwell with ME-like symptoms. That could be correctly diagnosed as post-infectious ME where the triggering infection happened to be Lyme.

4. They don't get diagnosed with Lyme, and are misdiagnosed with ME, but later may be suspected to have Lyme and given antibiotics. This may then follow any of routes 1 to 3.

I have no idea whether that is a correct summary of the possibilities.

 

[Woolie]

@duncan, thanks for responding. I'm still trying to get my head around what a bacterial infection has to do with mould sensitivity. What tent dwelling could possibly offer. That sounds more like an immune thing than an infectious disease.

 

[Skycloud]

@duncan It's possible the woman in the article just wasn't tested for Lyme as part of her original diagnosis process. It's very possible that a GP wouldn't test if their area wasn't considered to be a lyme area. I don't know how widespread testing for Lyme as part of differential diagnosis is in the UK, and I would think the incidence of testing has changed over time anyway.

I'm not aware of having been tested for lyme 12 years ago when I became ill, despite living in an area with deer. I'm not aware of ever having been bitten, though I would have been exposed to the possibility on numerous occasions. Our area wasn't considered to be a lyme area (several years ago), though it's possible that idea has changed, I haven't checked recently. (Hope this makes sense)

 

[duncan]

1. They get diagnosed early correctly, have antibiotic treatment which clears the infection and they recover, though the process may be lengthy and include complications.

Yes. By far the great majority seem to make a full recovery if caught and treated early.

They get diagnosed early correctly, have antibiotic treatment which does not clear the infection and the infectious organisms stay in the system but are hard to verify using current tests, and they have persistent symptoms from the continued presence of live organisms - Chronic Lyme. This may be misdiagnosed as ME.

Yes. But the greater risk of things going South occur when it is NOT caught early. Then the incidences of complications and difficult treatment reports rise significantly. You don't want Lyme to get disseminated, any more than you would syphilis. The sense of urgency with getting syphilis treated early needs to be carried over to Lyme, and for almost identical reasons.

So, yep, it's the infection by Borrelia that is causing symptoms (well, technically one's immune system responding to Bb causes symtpoms) and yes, because of entrenched dogma and lousy diagnostics, Lyme patients get diagnosed with ME. OR, one cause of ME could be persistent Lyme, but that's crappy semantics.

3. They get diagnosed early and correctly, have antibiotic treatment that kills off the organisms, so the infection has gone, but they stay unwell with ME-like symptoms. That could be correctly diagnosed as post-infectious ME where the triggering infection happened to be Lyme.

Or this could be ME/CFS. CDC and friends call this Post Treatment Lyme Disease Syndrome, but there likely isn't such a thing. It certainly is suspect in my book.

4. They don't get diagnosed with Lyme, and are misdiagnosed with ME, but later may be suspected to have Lyme and given antibiotics. This may then follow any of routes 1 to 3.

I think this happens far more often than people realize, and I also think steps 1 to 3 don't happen very much.

It gets complicated. If ME/CFS is autoimmune triggered by infection, Lyme could do that, in theory. If it is a corrupted immune system, Lyme could do that, on paper. If ME/CFS is a stealth infection that flies below our diagnostic radar, Lyme could fit that bill as well.

Or maybe it's none of those. Who knows? I can tell you they haven't really been looking until very recently, and that only after a 20 or so year hiatus, and even now only a handful are looking.

 

[duncan]

thanks for responding. I'm still trying to get my head around what a bacterial infection has to do with mould sensitivity. What tent dwelling could possibly offer. That sounds more like an immune thing than an infectious disease.

I do not know. But I see mold sensitivities discussed in both ME and Lyme forums. As for immune dysfunction, Lyme does that in spades. Antigenic variation is its most famous immune ploy. This causes IgG cases to go IgM, i.e, late stage to early stage, and this should not happen, and IDSA stalwarts draw a line in the sand and claim it does not - but it does.

Edited to add: I forget things so much in real time (pretty much all other times, too). But this antigenic variation is a hallmark of relapsing remitting diseases such as Borrelia relapsing fever, another serious tick-borne disease. Most clinicians are taught that Lyme is not relapsing remitting, but many believe late stage is. This waxing and waning of symptoms - not just over the course of a day, but measured over weeks and months - is as you know associated with several autoimmune diseases.

 

[duncan]

It's possible the woman in the article just wasn't tested for Lyme as part of her original diagnosis. It's very possible that a GP wouldn't test if there area wasn't considered to be a lyme area. I don't know how widespread testing for Lyme as part of differential diagnosis is in the UK, and I would think the incidence of testing has changed over time anyway. I'm not aware of having been tested for lyme 12 years ago when I became ill, despite living in an area with deer. I'm not aware of ever having been bitten, though I would have been exposed to the possibility on numerous occasions. Our area wasn't considered to be a lyme area (several years ago), though it's possible that idea has changed, I haven't checked recently. (Hope this makes sense)

I would tend to agree with you, especially in the UK where Lyme is not thought to be endemic. I live in a Lyme endemic region, and I know even here sometimes people get diagnosed with ME/CFS without ever being tested for tick-borne diseases (although that is becoming a rarity).

 

[NelliePledge]

seems awareness of Lyme is spreading in the UK Public Health England have published new awareness info recently and I know from a general facebook group near me -not in the south where Lyme has been publicised before I believe - someone has in the last few weeks been treated for a suspected Lyme infection after getting a bullseye rash

Im interested in Lyme as I had bullseye rashes 20 years ago from a holiday in Sri Lanka which I thought were just nasty mozzie bites at the time. I did mention this to GP a couple of years ago but as NHS doesnt think chronic Lyme exists no testing. On looking into it Im not sure there's much point going for testing until the tests improve. Id never heard of Lyme until 2 years ago so never had test or antibiotics at the time I got the bullseye rashes.

https://assets.publishing.service.g...s_requested_changes_June_2018_final_Clean.pdf

 

[duncan]

@NelliePledge , there are a couple reasons for testing. There are more against it, I suppose, according to some. Were it me, I'd get tested. I am not a medical doctor, of course, this is simply my opinion.

It's not a function of so-called chronic Lyme. It's late stage Lyme you may need to be concerned with. So, easy enough to get tested with the C6. The issue is whether the C6 covers the strain you may have been exposed to in Sri Lanka. The C6 is highly conserved across strains, but there's supposedly an issue with the 26 amino acids thingee or whatever.

There are proteins that are expressed in most strains of Lyme that may become apparent on the Western Blot (although not necessarily, and of course the WB excludes the 2 most specific Lyme proteins thanks to the vaccine, the Holy Grail).The WB is a test I'd pursue. You don't need five bands to suggest a Borrelia infection, despite what is advised by the CDC.

Regardless, yes, I'd be concerned about accuracy, too.

I hope this makes sense. I do better in mornings.

 

[Woolie]

I do not know. But I see mold sensitivities discussed in both ME and Lyme forums. As for immune dysfunction, Lyme does that in spades. Antigenic variation is its most famous immune ploy. This causes IgG cases to go IgM, i.e, late stage to early stage, and this should not happen, and IDSA stalwarts draw a line in the sand and claim it does not - but it does.

Edited to add: I forget things so much in real time (pretty much all other times, too). But this antigenic variation is a hallmark of relapsing remitting diseases such as Borrelia relapsing fever, another serious tick-borne disease. Most clinicians are taught that Lyme is not relapsing remitting, but many believe late stage is. This waxing and waning of symptoms - not just over the course of a day, but measured over weeks and months - is as you know associated with several autoimmune diseases.

I get the antigenic variation, latent infection thing. Infection hides, undetected in the tissue for ages, etc. Like EBV. But what does that have to do with toxins in mould?

I totally get that people diagnosed with Lyme can be severely ill, no questions in my mind there, what they have is awful. Borelia certainly seems nasty enough to precipitate lifelong chronic illness. But the form that illness takes just looks so much like ME, and so little like late-stage syphilis, could it be that its not the original infection that's the problem, its the dysfunction in the immune system it has caused?

We went through a similar thing with EBV and HHV6 in ME. It once looked a lot like these viruses were the primary problem (causing havoc with our immune systems in their latent forms), but now we're thinking more that the initial reaction to these viruses probably destablises the immune system in some complicated way, and that's the real root of the chronic problem.

I worry because if advocacy efforts for Lyme rest on a certain causal model of the disease, and if that doesn't pan out, then advocacy could be compromised. Because that's exactly what happened in ME. Through the XMRV controversy, and also the EBV/HHV thing some years later, we learned the hard way not to put all your eggs into one causal basket.

 

[duncan]

I get the antigenic variation, latent infection thing. Infection hides, undetected in the tissue for ages, etc. Like EBV. But what does that have to do with toxins in mould?

I'm not sure this agrees with my takeaway from the article. But the short answer is I'm not sure what connection this has to do with mold. But I'm not sure of a lot.

I totally get that people diagnosed with Lyme can be severely ill, no questions in my mind there, what they have is awful. Borelia certainly seems nasty enough to precipitate lifelong chronic illness. But the form that illness takes just looks so much like ME, and so little like late-stage syphilis, could it be that its not the original infection that's the problem, its the dysfunction in the immune system it has caused?

That is not quite accurate. Late stage neuroborreliosis looks quite similar to neuro-syphilis. Somewhere here today I posted a thread of a write-up Judith Miklossy did on that very subject, and she is an expert on the subject of spirochetal infections. Nevertheless, the idea that persistent symptoms after Lyme has resolved exist, and are due to immune dysfunction, has merit, and has attracted some good thinkers, including I believe Mark Davis.

We went through a similar thing with EBV and HHV6 in ME. It once looked a lot like these viruses were the primary problem (causing havoc with our immune systems in their latent forms), but now we're thinking more that the initial reaction to these viruses probably destablises the immune system in some complicated way, and that's the real root of the chronic problem.

Yes. Right? This might be correct. BUT...You need to know context...I think there has been some deliberate misrepresentation involved, and that concerns me.

I worry because if advocacy efforts for Lyme rest on a certain causal model of the disease, and that doesn't pan out, then advocacy could be compromised. Because that's exactly what happened in ME. Through the XMRV controversy, and also the EBV/HHV thing some years later, we learned the hard way not to put all your eggs into one causal basket

Fair. But this is not what's happening. What's happening isn't that IDSA-types are saying it's not Lyme, it's something else. They are saying these people claiming to be sick with Lyme were never sick to begin with. I personally can refute their position on multiple levels without ever having to point to the appalling ethical affront. Many can.

As for XMRV, I lived it. I sat with Judith Mikovitz. I will not say who was right or wrong there, but I can tell you I have also lived the Lyme controversy, and I have spoken with the leaders of both camps, and I know I have been lied to with that. Anyone who wants to know the truth can see it all unfold in the studies of the 70's, 80's and 90's.

Australia and UK are at the fringes. Here in the US we patients are in the spiral of the Borrelia tornado, and we know which way the winds blow. Sorta. But we know for sure the derision Lyme is held in both nations, and wrongly so. You would think that having lived the ravages of ME/CFS disbelief, both communities would be open to how it could happen elsewhere.

 

[Woolie]

So @duncan, would there be symptoms of chronic Lyme that could differentiate it from ME? I'm mean symptoms, not serology. I said above that symptomatically, the two illnesses look much the same, but I could be wrong on that. I would be happy to be corrected.

Australia and UK are at the fringes. Here in the US we patients are in the spiral of the Borrelia tornado, and we know which way the winds blow. Sorta. But we know for sure the derision Lyme is held in both nations, and wrongly so. You would think that having lived the ravages of ME/CFS disbelief, both communities would be open to how it could happen elsewhere.

That's not really fair. I completely believe that people diagnosed with Lyme are very, very ill. And its is very, very awful. I have no disbelief in the illness whatsoever. But what I'm questioning is the current conceptions of the disease mechanism.

This is Science for ME, here our culture is to question causal explanations of ME and in fact all diseases. We do not treat that type of debate as disbelief, if we did around two thirds of the discussions here would have to be deleted. If in 2011, we'd all dug our heels in over XMRV, and treated any challenges to that particular causal explanation of ME as "disbelief", we would be in a much worse position today than we currently are.

In the same way, there are a lot of people diagnosed with Lyme, they deserve to have the science moved forward, not stuck in a holding pattern that can't be challenged due to "disbelief".

 

[duncan]

@Woolie, yes, on paper, there are supposedly symptoms specific to chronic Lyme. The chief one would be swollen knees (yuck - steriotypical Steere's disease). There is another one, but I can't think of it at the moment. (The Bulls-eye rash.)Conversely, ME/CFS has PEM, which supposedly Lyme does not.

That's not really fair. I completely believe that people diagnosed with Lyme are very, very ill. And its is very, very awful. I have no disbelief in the illness whatsoever.

I apologize. I truly did not mean to offend. But read some of the responses to Lyme posts here. I think the bias is real. I surely can be wrong, though, and hopefully am.

If in 2011, we'd all dug our heels in over XMRV, and treated any challenges to that particular causal explanation of ME as "disbelief", we would be in a much worse position today than we currently are.

Agreed. As I remember, though, there were a hell of a lot of challenges all around. Your point, I think, is to expose all causal claims behind MECFS to scrutiny, and I second that without hesitation. I would just add the caveat of making sure desire for Science to reign doesn't give in to cynism and confirmation bias. If that sound condescending, I apologize - it is not my intent, just my experience.

In the same way, there are a lot of people diagnosed with Lyme, they deserve to have the science moved forward, not stuck in a holding pattern that can't be challenged due to "disbelief".

Nods. Who controls the narrative, however? Who controlled it in the UK until very recently? It wan't the good guys.

 

[duncan]

@Woolie, I think the reservations you and others have are that you think the science pretty much eschews the concept of chronic or persistent Lyme following antibiotics. I get the sense @Jonathan Edwards feels the same, although of course I could be wrong. You believe people are suffering, but it's not likely due to Lyme as that is what the science you've been expose to tells you.

But what if I said that what you have learned about Lyme and otherTBDs may be a spoon-fed marketing campaign to make you think exactly as you do? You'd scoff, yes? So did I until I dug into it. It's what I did before I got sick; for three decades I was a research analyst. What I found when I dug beneath the surface of Lyme turned my stomach. It undid everything I had learned as a kid about Science and the scientific endeavor and integrity and truth before profits etc.

 

[Woolie]

Thanks for the replies @duncan, and for talking the time to explain.

Agreed. As I remember, though, there were a hell of a lot of challenges all around. Your point, I think, is to expose all causal claims behind MECFS to scrutiny, and I second that without hesitation. I would just add the caveat of making sure desire for Science to reign doesn't give in to cynism and confirmation bias. If that sound condescending, I apologize - it is not my intent, just my experience.

I totally get you there. So tired of those lazy self-satisfied "skeptics" who only question research on topics that are widely considered to be frigney. Its very easy to appear clever and superior when you pick easy targets like homeopathy and iridology.

That's interesting about the swollen knees. Is this only during the acute phase, or does it occur in chronic Lyme too? The lack of PEM is interesting too, and persuasive.

@Woolie, I think the reservations you and others have are that you think the science pretty much eschews the concept of chronic or persistent Lyme following antibiotics. I get the sense @Jonathan Edwards feels the same. You believe people are suffering, but it's not likely due to Lyme as that is what the science you've been expose to tells you.

Honestly, I'm ashamed to say I haven't read much at all about Lyme. I wasn't sure what the current theories were. I didn't know whether chronic Lyme was believed to be the result of ongoing infection, or more an immune dysfunction that occurs some time later. About all I knew is that people in the US with ME-like symptoms often end up with a Lyme diagnosis. And that our paths intertwine in many complicated ways.

I did know there was debate about the status of chronic Lyme disease, and about the sensitivity and specificity of some of the tests used to diagnose it.

It seems to me that the Lyme community has a much bigger battle to fight than us because in Lyme, the illness itself and the purported cause are bound together. So the legitimacy of the disease rests on the legitimacy of the causal model. In ME, this is not the case. Causal models can come and go, the concept of the illness is not tied to them.

 

[duncan]

That's interesting about the swollen knees. Is this only during the acute phase, or does it occur in chronic Lyme too? The lack of PEM is interesting too, and persuasive.

Swollen knees are the foundation upon which much of the concept of chronic lyme was built, unfortunately. To this day, Steere or one of his disciples struggles to demonstrate a cause for swollen knees post abx. HLA genes, molecular mimicry,non viable borrelia debris - all and more have been used in attempt to say anything but Lyme causes swollen knees post-treatment. But to little avail.

The erythema migrans and swollen knees are virtually diagnostic, but immediately after treatment, they can mean very little. To people like me, persistent swollen knees suggest persistent Bb. A host of other symptoms, not so overt, can also suggest continued infection. Eva Sapi's study released in 2018 seems to support that interpretation:
http://www.mdpi.com/2227-9032/6/2/33

 

[NelliePledge]

@NelliePledge , there are a couple reasons for testing. There are more against it, I suppose, according to some. Were it me, I'd get tested. I am not a medical doctor, of course, this is simply my opinion.

It's not a function of so-called chronic Lyme. It's late stage Lyme you may need to be concerned with. So, easy enough to get tested with the C6. The issue is whether the C6 covers the strain you may have been exposed to in Sri Lanka. The C6 is highly conserved across strains, but there's supposedly an issue with the 26 amino acids thingee or whatever.

There are proteins that are expressed in most strains of Lyme that may become apparent on the Western Blot (although not necessarily, and of course the WB excludes the 2 most specific Lyme proteins thanks to the vaccine, the Holy Grail).The WB is a test I'd pursue. You don't need five bands to suggest a Borrelia infection, despite what is advised by the CDC.

Regardless, yes, I'd be concerned about accuracy, too.

I hope this makes sense. I do better in mornings.

Thanks @duncan the bullseye rashes is the only thing that makes me think about testing for Lyme - I don’t remember feeling ill around the time or in the year following. I noticed you mentioned swollen knees in subsequent posts. I have some pain in muscles and joints but not noticeable swollen knees. I suspect that if anything I had a mild Lyme infection at the time of the rash that hasn’t persisted but may have contributed to me getting ME. Several years earlier I had chicken pox as an adult and also think this is a contributory factor. I definitely get PEM which also makes me think probably not chronic Lyme. If the testing was more reliable I would do it just to check. But if I get negative on the current tests I still won’t really know so waiting until there are better options seems sensible rather than spending cash to learn nothing conclusive.

As an aside from testing I’m wondering if there are any Lyme folks using Olive leaf as ostensibly it has both anti bacterial and anti viral properties.