Chronic Lyme Disease: a discussion of the epidemiological data

Michiel Tack said:
Just noticed this large Dutch study (LymeProspect, target size = 2300) that will look at the prognosis of Lyme-disease. It started in 2015 and stopped in 2019, so perhaps we could expect the results this year. The protocol was been published here:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6466793/
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The results of this study have been published here:
https://www.thelancet.com/journals/lanepe/article/PIIS2666-7762(21)00119-8/fulltext

The prevalence of what the authors defined as persistent symptoms, was more prevalent in those who had acute lyme disease than in the controls group, although the difference was relatively small.

The main results are:

Prevalence of persistent symptoms in LB patients was 27•2% (95%CI, 24•7%-29•7%); 6•0% and 3•9% higher than in population (21•2%, 95%CI, 19•3%-23•1%; p < 0•0001) and tick-bite (23•3%, 95%CI 21•3%-25•3%; p = 0•016) cohorts, respectively.​
 
There is also a new prospective study by the Aucott group that reported a larger difference. The authors report:

"13•7% with a history of prior LD met criteria for PTLD compared to 4•1% of those without. Participants with prior LD were approximately 5•28 times as likely to meet PTLD criteria compared to those without (p=0•042) and had 2-3 times as high odds of reporting moderate or severe fatigue and muscle pain (p=0•002, 0•047, respectively)"
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Source: https://www.sciencedirect.com/science/article/pii/S1201971222000352
 
Not sure what to make of this literature now. Seems inconsistent, mostly dependent on how "persistent symptoms" is defined. The high background rate that some studies find, suggest to me that they haven't defined it stringently enough.

Would be interested to see a study that tested for ME/CFS case definitions using clinical examinations and more than 12 months after the lyme infection.
 
Michiel Tack said:
Not sure what to make of this literature now. Seems inconsistent, mostly dependent on how "persistent symptoms" is defined.
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Look at the first sentence of the Dutch study: "Concerns about long-lasting symptoms attributed to Lyme Borreliosis (LB) are widespread in the western would, while those symptoms are highly prevalent in the general population." Without reading a word more, I'd respond apples and oranges. A brief ice headache brought on from biting into ice cream, although technically a headache, is not long-lasting and does not rise to the intensity of, say, a migraine.

Without reading the entire study, that first sentence suggests to me that the results may manage to reduce to the mantra that achieved notorious levels in 2006 with the newly released Lyme Guidelines suggesting that persisting symptoms were likely little more that the aches and pains of everyday life - something everybody experiences. It seemed that if you couldn't see the symptom, e.g. facial palsy, grossly swollen knees etc, then those symptoms that they would label as subjective, were a) minor, and b) degree or intensity and duration and didn't seem to hold any particular import. Nor to me did it appear that when it comes to persistent symptoms, did the notion the whole, at times, can be greater than the sum of the parts play any great role in deliberations.

But I will tackle the rest of the study and give it its fair due when I feel up to it. I don't want to be rash and prejudge it. I will do my best to read it all.

As for Aucott's recent endeavor, he's an unusual guy in my estimation. He is somewhat famous being a John's Hopkins guy who endorses the idea that persistent symptoms in Lyme can in fact be debilitating. That's great! But he also endorses this contrived PTLDS creature. Why? Well, who can say? Does it have anything to do that he was once an infectious disease guy, but now he's a rheumatologist, if memory serves me? Which may suggest he might be looking for that Holy Grail of an autoimmune nature? I like Aucott. I believe he is trying to serve the patient. I just happen to think he's coming at it from the wrong camp. Again, I will read his latest effort when I feel up to it. It's difficult for me to read long things without the process exacting a stiff toll these days.

Thank you, @Michiel Tack , for bringing both studies to every body's attention.

Edit to add: The Dutch thing appears to involve patients mostly treated in acute stage. This is NOT the same as treating after the disease has disseminated. Sigh. Moreover, it seems they only followed patients for 12 months. I was asymptomatic my first 12 months. Even Willy Burgdorfer warned about the prevelence of asymptomatic Lyme following infection.
 
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I'm not a fan of the dutch study. For example, look how they estimate cognitive difficulties. How do you really accurately do this without assessing pre-Lyme levels against Lyme levels on an individual level? The answer is you cannot, certainly not with most of the blunt cognitive assessment tools in today's arsenal.

Hey, why are the culturing EM's? Why even bother?

Also, despite what is common in most Lyme research studies, symptoms in Lyme patients are not necessarily static. They frequently seem to be almost relapsing remitting. I realize Bb is not categorized as such, but I think there is an argument that it could be.

Ok, read it. I have no clue how they justify getting from point A to point B in a few instances. For example: "Third, it could be hypothesized that ongoing infection despite treatment may underlie persistent symptoms. Therefore, at all follow-up time points, LB patients were asked to report new LB diagnoses or manifestations. Nine patients reported LB manifestations during follow-up, none of which was suspicious for relapse of the prior infection. Thus it seems unlikely that treatment failure has a large share in the total number of patients with persistent symptoms." What??? How is this not a non-sequitur? How is it even a conclusion they feel comfortable making without some kind of diagnostics? How are new LB diagnoses not cause for disqualification from the study? And why should any new manifestations signal a "relapse"? Aren't these patients already symptomatic without the new manifestations, so that it's safe to assume if persistent infection is the culprit, any additional manifestations are moot or offer additional evidence of spirochetal presence?

Let's just leave it at my first sentence in this post: I'm not a fan of the Dutch study.
 
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Michiel Tack said:
Not sure what to make of this literature now. Seems inconsistent, mostly dependent on how "persistent symptoms" is defined. The high background rate that some studies find, suggest to me that they haven't defined it stringently enough.

Would be interested to see a study that tested for ME/CFS case definitions using clinical examinations and more than 12 months after the lyme infection.
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Interesting new study based on UK primary care databases that suggests an increase in fatigue-related symptoms following infection with Lyme disease.
https://www.s4me.info/threads/incid...cohort-study-2022-brellier-nacul-et-al.25110/
 
If I'm not mistaken, @Michiel Tack , although they list several possibilities that could account for the persistence of this sole symptom - odd they should just pick one, potentially trivializing the patient experience - the one explanation I did not see considered was unresolved Lyme disease.

In my book at least, if someone satisfies the onerous requirements to earn a Lyme diagnosis, then if that patient has symptoms that persist months and years, it becomes incumbent on the medical community to prove Lyme has been eradicated.

Since that appears not to have been done here, it seems to me a lot of statistical calisthenics.
 
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@Michiel Tack, remember when I advised you needed to cast your epi net further back than you appeared to have done?

I was doing some reading yesterday and chanced across this 1990 study of chronic Lyme symptoms. If memory serves me, this would have been right before the real BIG push to distance Lyme from chronic symptoms (a push which many attribute to vaccine potential).

https://www.nejm.org/doi/full/10.1056/NEJM199011223232102

Notice the authors? All three were prominent Lyme researchers, and all three are noted in your list of references.

If you search back even further, especially off and on throughout the 1980's, you find similar papers.

I realize you have moved on, but this study along with the one you alluded to yesterday, made me think of you. :)
 
Thanks Duncan

The paper was already in my folder so I must have taken a look at it. I think I didn't mention it in the overview because it was small and not a prospective study. But from what I recall long-term symptoms of Lyme were mentioned quite a few times and taken seriously in the early papers.

Since I wrote the overview, quite a few decent studies have come out that do suggest increased long-term symptoms following Lyme disease, so not sure what to make out of it now.
 
unable to read entire thread but woul dlike to. has there been a consensus of any kind? can /untreated/ lyme result in severe progressive m.e.-like symptoms [or m.e.], highly multisystem, and other symptoms, for many years? [end on-topic part.]

I grew up in in a top endemic Lyme disease location in e.g. 70s. I frequently found ticks on me, sometimes engorged. I pulled them off. I frequently walked through tall grass. Had never heard of Lyme as a child.

They resembled adult female American dog tick or
blacklegged (deer) tick. (According to years-later memory
(<http://www.tickencounter.org/tick_identification/tick_growth_comparison>)).) I was never treated/tested.

I don't know anything about Lyme. I have no clear memory of bullseye rashes. I have a scar from what was called a blood blister at the time I think (that might not be relevant, but an LLRN thought it was, and diagnosed me with Lyme by neurological exam that included a tuning fork, as an adult -- for whatever it's worth). (I got Igenex in 2001 or so, rather expensive, which if I recall correctly were called equivocal by LL...chiropractor. Again for whatever it's worth.)
 
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