Maybe It’s Lyme What happens when illness becomes an identity? (2019) The cut - Molly Fischer

[richie]

What do you mean by that? There is no evidence that antibiotic-refractory Lyme arthritis is due to chronic borreliosis, but instead some other chronic consequence of the initial infection.

The spirochete may nevertheless be present even if symptoms arise via other mechanisms. I do not think "antibiotic refractory" and "chronic" are synonyms. You may be right about antibiotic refractory Lyme arthritis, but that does not negate the concept of chronic Lyme.
Spirochetes according to some studies do persist after nominally adequate antibiotic courses. Both "chronic" and "refractory" need proper definition.

 

[richie]

https://ajp.amjpathol.org/article/S0002-9440(17)30894-5/pdf

https://www.ncbi.nlm.nih.gov/pubmed/8968890/

 

[Mij]

Y'know, that's pretty similar to things that Simon Wessely has said about ME...

How is that? I am not dismissing that people are sick and suffering, it's the diagnosis of 'chronic lyme' I have a problem with, in which patients are persistently infected.

 

[richie]

How is that? I am not dismissing that people are sick and suffering, it's the diagnosis of 'chronic lyme' I have a problem with, in which patients are persistently infected.

Hello Mij,

Would you allow/agree with the diagnosis "chronic Lyme/borreliosis" ever? E.g untreated cases of long duration, treated cases which continue to be seropositive and/or have PCR evidence?
Such cases may not be the same as other cases with which you might have problems but surely the application of the term "cL" is more problematic than the actual existence of the condition i.e. the question should be correct diagnosis of a real illness rather than whether the illness actually exists.
I think that reflects the general stance in Germany where the existence of Lyme with chronic course is little doubted, but the means of determining whether a patient has such an illness are disputed. Sadly the English speaking world has taken a somewhat more zero sum approach.

 

[duncan]

The spirochete may nevertheless be present even if symptoms arise via other mechanisms. I do not think "antibiotic refractory" and "chronic" are synonyms. You may be right about antibiotic refractory Lyme arthritis, but that does not negate the concept of chronic Lyme.

They pretty much are synonymous in my book, but the definition game is absolutely an issue. The problem, though, is likely reversed from what most people believe. It's mainstream conventional Lyme mouthpieces that have tried to redefine what chronic Lyme is.

Back in the 80's, you'd have no trouble finding references to Lyme cases that were chronic, even amongst IDSA disciples. Chronic Lyme suggests treatment failed, otherwise they would have simply referred to it as late stage.

Today, though, there are at least two or three definitions. One, put forth by a handful of IDSA-types, literally defines chronic Lyme as having to exclude Lyme.This is precisely why I advise patients and doctors to stick with late stage refractory to treatment.

 

[richie]

You may have chronic Lyme PRE-ab-x, surely? You can have it chronically before you even get a diagnosis.
Post ab-x either ongoing infection, debris, autoimmunity or a mix of all 3 + other factors may be involved, which is a matter of dispute.
My point really is that it is absurd to deny that Lyme per se can be chronic, because of a dispute about testing methods and ongoing symptoms post ab-x.

Why do people attack "chronic Lyme" per se? After all GP's are keen to treat ASAP. They try to do so. Why? To prevent worsening over time, not knowing whether such worsening might be the infection or sickness due to e.g. autoimmunity etc. or a mix. And who can say that "Chronic" = still infected after 2 years or 3 or 7 months or whatever.

 

[duncan]

You may have chronic Lyme PRE-ab-x, surely? You can have it chronically before you even get a diagnosis.

No, it's just late stage in my book. But I'm splitting hairs.

My point really is that it is absurd to deny that Lyme per se can be chronic, because of a dispute about testing methods and ongoing symptoms post ab-x.

Agreed.

ETA: What if you had Lyme for weeks/months/years but were asymptomatic? Would it be chronic?

 

[duncan]

Here's another question, @richie : you know the theory that says once infected you may always test positive? What if the reason you always test positive is because you've never cleared the infection?

To this day, they cannot give a convincing argument why a C6 will decline upon successful treatment for early and early disseminated Lyme, but not for late stage in many cases. An obvious reason is the infection has not resolved.

Cool stuff. There are so many question marks out there re: Lyme.

 

[richie]

No, it's just late stage in my book. But I'm splitting hairs.


Agreed.

I think we should go for consistency.
Stages defined by usually accompanying symptoms (fuzzy boundaries)
Chronic according to length of infection (again imprecise)
Post in cases where overall the infection appears to be resolved but symptoms remain - with an open mind as to possibility of persistence.

I think that would reduce the area of dispute on c-L to who is post vs. who (if anyone) is chronic treatment resistant. Long term active infection should be called what it is - chronic Lyme. Half the anti c-L argument seems absurd.

 

[richie]

Here's another question, @richie : you know the theory that says once infected you may always test positive? What if the reason you always test positive is because you've never cleared the infection?

To this day, they cannot give a convincing argument why a C6 will decline upon successful treatment for early and early disseminated Lyme, but not for late stage in many cases. An obvious reason is the infection has not resolved.

Cool stuff. There are so many question marks out there re: Lyme.

There certainly are.

 

[duncan]

I think we should go for consistency.
Stages defined by usually accompanying symptoms (fuzzy boundaries)
Chronic according to length of infection (again imprecise)
Post in cases where overall the infection appears to be resolved but symptoms remain - with an open mind as to possibility of persistence.

I think that would reduce the area of dispute on c-L to who is post vs. who (if anyone) is chronic treatment resistant. Long term active infection shoudl be called what it is - chronic Lyme. Half the anti c-L argument seems absurd.

Maybe you are right. Not sure where asymptomatic would fall, but your idea has a lot of merit. How do you factor in when it resists treatment?

 

[richie]

Maybe you are right. Not sure where asymptomatic would fall, but your idea has a lot of merit. How do you factor in when it resists treatment?

If it's still there it's chronic and refractory to ab-x. Problem is how to prove it's still there except by symptoms, which might be due to debris, autoimmunity etc. Some labs now test for genetic types prone to autoimmune sequelae, alleged to bear more responsibility for the symptoms than the infection - ongoing or not. Of course some anti C-L champions, rather than welcoming a non infective explanation of post ab-x Lyme phenomena, will then attack the peddling of "woo" - (antioxidants, diet etc.) for post Lyme, while themselves advocating CBT, meditation etc, for post Lyme which is no less "woo". I'm pragmatic - if "woo" helps go for it, just don't spend too much and don't get dogmatic.

Asymptomatic - you're lucky.

 

[duncan]

Asymptomatic - you're lucky.

Now that made me chuckle. I am not asymptomatic. But I think many who continue to test positive may be. That's just speculation though.

And a big nod toward your "pragmatism."

The problem I have with PTLD is that those who advocate it often suggest immunosuppessants. If they are wrong, then maybe the last thing you want to do is hold back your immune system. Of course, the flip side of that is also true: If it is spirochetal debris that is causing an immune reaction, abx would be pointless or worse.

 

[richie]

No, it's just late stage in my book. But I'm splitting hairs.


Agreed.

ETA: What if you had Lyme for weeks/months/years but were asymptomatic? Would it be chronic?

Sorry overlooked this question.
Chronic asymptomatic infection, should be understandable. Who would want to argue about that?
Maybe the SMC.

 

[richie]

Now that made me chuckle. I am not asymptomatic. But I think many who continue to test positive may be. That's just speculation though.

And a big nod toward your "pragmatism."

The problem I have with PTLD is that those who advocate it often suggest immunosuppessants. If they are wrong, then maybe the last thing you want to do is hold back your immune system. Of course, the flip side of that is also true: If it is spirochetal debris that is causing an immune reaction, abx would be pointless or worse.

Agree 100%. I am e.g. careful of e.g. LDN.
Some antibiotics are anti inflammatory so maybe that could cover both risks.

 

[duncan]

Chronic asymptomatic infection, should be understandable. Who would want to argue about that?

Well, let's see...The CDC, the IDSA, the NIH, the ALDF. Off the top of my head.

SMC?

In the US for those who embrace the Post Treatment Lyme Disease explanation, Plaquenil is popular. Eh.

 

[richie]

Science Media Centre.

 

[Peter T]

I have not read the article, but it does sound as if the author is confusing how people respond to their condition, with the nature of their condition.

Different people and different patient groups respond to their conditions very differently. I, many years ago, ran a number of groups of people with very varied communication disabilities arising from different causes. It was interesting that the people with congenital disabilities, eg cerebral palsy has a very different political understanding of their condition to people with conditions acquired in adulthood such as stroke. The former were more likely to have a social model of disability, whereas the latter focused more on the medical model.

Those with congenital issues that went through the special school system, perhaps with parents that had spent their lives fighting the system and fundraising, might focus more on the need for specialist provision, where as those that went through mainstream education, with parents that had fought for inclusion, might be more focused on the need for integration and access.

It is not that any one political or ideological approach was right or wrong, or anyone set of constructs around an individual’s condition was more therapeutic than any other. It is just that they are different. I found it enormously stimulating for everyone when people with different understanding and expectations came together and explored each other’s view points.

It seemed to me that problems only arise where clinicians seek to impose their understanding on the clients/patients. Long term disability requires the individual experiencing it to find a way of living with it that works for them. There is no right or wrong answer, and a clinician seeking to impose their understanding is part of the problem, effectively disempowering the people they are supposed to help.

Patient forums, the internet, self help groups may encourage less passive patients, but the only problem that causes is for clinicians seeking passive patients, clinicians that can not cope with patients no longer operating in a medical model where the expert gives the magic pill (or exercise programme or psychotherapy) and if they do what they are told the patients will be cured. In general such clinicians are the ones that have not accepted there is not likely to be a cure in these circumstances.