Chronic Lyme disease = Late Lyme disease

Medical topics with questions, information and discussion related to Lyme disease and other tick-borne diseases.
duncan
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Re: Chronic Lyme disease = Late Lyme disease

Post by duncan » Wed 18 Jun 2014 20:09

I'm pretty sure the IDSA's version of Late Stage Lyme is simply Lyme that has progressed from acute stage to late stage in the absence of treatment. The length of time seems really to be vague, but I guess the general idea is whatever length of time it takes to disseminate, and certainly to render all titers IgG, with at least five bands positive, etc.The important thing to remember with the IDSA and the CDC, and yes, the NIH, is they support a view that once IDSA recommended treatment has been rendered, then with only a possible rare freakish exception, the Late Stage Lyme has been eradicated, so there is no more Late Stage Lyme. Period. If symptoms persist, you are then dealing with Post Treatment Lyme Disease Syndrome. No such beast as chronic Lyme in their view, so that semantical debate is rendered moot.

Not sure how this stacks up against ECULAB's.

Personally, I think chronic suggests persistence despite treatment, but I think that can be stretched to include the inability of one's own immune system to resolve the illness. I think the Europeans have it right, if I understand correctly, that you can have Late stage Lyme with treatment and without, and chronicity refers to whether it can be resolved or not.

I probably screwed that up, X-member.

Edited to add: I want to point out that I think this is a big flaw in IDSA doctrine, and an easy target. The IDSA Guidelines make brief mentions of the risk in not treating promptly, of Lyme becoming more difficult to treat in the later stages, with possibly more complications. But these references are very short. That's unfortunate because for me they give rise to more questions than they answer. What if treatment was inadequate? What if only oral antibiotics were administered when IV was called for? Does duration of infection impose any degree at all on difficulty in treatments efficacy? Have there been any definitive studies looking at this, and who gets to define "recovered"? Does up to four weeks of abx really have the same impact on someone infected 20 years as it does for someone 20 days? Why isn't Late Stage Lyme being studied in more earnest since clearly many individuals are going undiagnosed, so the ranks of Late Stage Lyme, regardless of whose definition you embrace, must be swelling like one of Steere's classic infected knees.
Last edited by duncan on Wed 18 Jun 2014 20:31, edited 3 times in total.

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Re: Chronic Lyme disease = Late Lyme disease

Post by X-member » Wed 18 Jun 2014 20:21

In Scandinavia (and in many other places in this world) the word chronic (in medicine) stands for "of long duration" and persistent (in medicine) is used for an infection that survive the immune defence and/or the treatment.

Edit to add:

I asked a question in the post below (and I don't think it is hard to understand what CDC, EUCALB and ILADS talk about):

http://www.lymeneteurope.org/forum/view ... =20#p38578
Last edited by X-member on Wed 18 Jun 2014 21:00, edited 1 time in total.

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Re: Chronic Lyme disease = Late Lyme disease

Post by X-member » Wed 18 Jun 2014 20:45

What is my point?

http://www.lymeneteurope.org/forum/view ... f=5&t=5393

A quote (from the post above):
The controversial diagnosis of chronic Lyme disease is often given to patients with prolonged, medically unexplained physical symptoms.
I think that this is wrong or at least confusing, since the diagnosis "chronic Lyme disease" stands for chronic Lyme borreliosis (according to ILADS).

Chronic = late
Borreliosis = an infection with borrelia bacteria.

They (who wrote this) should instead prove to us, that it is no problems when it comes to late (chronic) and/or complicated borreliosis.

I am not at all interested in if "this or that" other infection can not be chronic.

Edit to add:

Well, it can be interesting to know (of course) if other infections can be chronic, but if I understand this correct they want to "make it look like" that not even the borrelia diagnosis is correct (= don't exists).

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Re: Chronic Lyme disease = Late Lyme disease

Post by X-member » Wed 18 Jun 2014 21:14

I post the quote (from the post above again) again:
The controversial diagnosis of chronic Lyme disease is often given to patients with prolonged, medically unexplained physical symptoms.
In my eyes they say:
The controversial diagnosis of chronic (= late) Lyme borreliosis is often given to patients with prolonged, medically unexplained physical symptoms.
And this diagnosis is not "controversial" in the rest of the world.

Edit to add:

And I post one quote from ILADS again:

http://www.lymeneteurope.org/forum/view ... =20#p38572
To be said to have chronic LB*, these three criteria must be present...
* Chronic Lyme BORRELIOSIS.

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Re: Chronic Lyme disease = Late Lyme disease

Post by X-member » Sun 29 Jun 2014 17:28

Perhaps this also belong in this thread?

http://www.eucalb.com/

A quote (from Description and Stages):
Acrodermatitis chronica atrophicans (ACA)

Is an unusual progressive fibrosing skin lesion which is probably the most common manifestation of chronic Lyme borreliosis in Europe. It usually occurs in the lower limbs of elderly people, starting with a bluish discolouration of the skin, followed by gradual epidermal atrophy, the skin developing a thin shiny, papery appearance. The condition is due to the effect of continuing active infection. Live spirochaetes have been isolated from skin biopsy specimens of patients with ACA as long as ten years after initial infection.
Many people (especially in Europe) find it confusing when some people use some other definition of "chronic Lyme".

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Re: Chronic Lyme disease = Late Lyme disease

Post by X-member » Fri 22 Aug 2014 18:34

And now we can add Finland.

In Finland kronisk borrelios (= chronic (Lyme) borreliosis) stands for an active, ongoing borrelia infection for more than 3-6 months.

Source (this is in Swedish):

- Borreliapatienter som inte får vård (radio program)

http://areena.yle.fi/radio/2327229

duncan
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Re: Chronic Lyme disease = Late Lyme disease

Post by duncan » Fri 22 Aug 2014 19:25

What would distinguish acute Lyme from chronic Lyme? It's not IgM's vs IgG's, although that would be convenient. Is it when fever disappears? Is it when the EM dissipates? Is it a function of specific cytokines or chemokines released as the disease progresses?

Maybe the better question is the simpler one: When does acute end in the absence of treatment?

I realize this is a subset of the conversation at hand, but I think it is fair. In the absence of treatment, or when under-treated, what immune changes occur that distinguish acute from chronic or late stage disseminated?

I'm not looking for an arbitrary time range, like after six months. I mean, what are the physiological differences between acute and post-acute Lyme?

Does anyone know?

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Re: Chronic Lyme disease = Late Lyme disease

Post by X-member » Fri 24 Oct 2014 15:44

Perhaps all of you already know this?

Chronic Lyme Disease

http://www.lyme-disease-research-databa ... sease.html
Chronic Lyme disease or late-stage Lyme is the third stage of this multi-system, multi-stage illness. Various factors may contribute to chronic Lyme disease. It can occur when patients have not been properly diagnosed or treated, or if they have received inadequate treatment.

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Re: Chronic Lyme disease = Late Lyme disease

Post by X-member » Fri 24 Oct 2014 16:09

Duncan wrote (earlier):
I'm pretty sure the IDSA's version of Late Stage Lyme is simply Lyme that has progressed from acute stage to late stage in the absence of treatment.
IDSA say:

http://cid.oxfordjournals.org/content/43/9/1089.full
Some have classified untreated and treated patients with objective evidence of late Lyme disease, such as arthritis or encephalopathy, as having chronic Lyme disease, instead of using the preferred terminology of late Lyme disease.
Edit to add:

They have "forgot" to mention ACA (acrodermatitis).

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ChronicLyme19
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Re: Chronic Lyme disease = Late Lyme disease

Post by ChronicLyme19 » Fri 24 Oct 2014 18:01

At the lat IDSA protest, the preferred term being thrown around the protesters was "persistent borreliosis", which I guess was appropriate for most of us there because we've all failed treatment at some level. But I think that term can be a little misleading as adding in persistent could suggest it's persisting only after treatment, rather than people who go for years without being treated. I think chronic borreliosis would be a better term, as opposed to acute borreliosis cases in which most are because they are resolved by a course of abx. Persistent borreliosis could be a sub-category of chronic borreliosis in which it has failed to respond to traditional antibiotic treatment. It's the same with late stage lyme, could be late stage where the patient has or has not been treated with antibiotics. More refferes to the level of symptoms, not whether or not it responds to treatment.
Half of what you are taught is incorrect, but which half? What if there's another half missing?

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