Chronic (Lyme) neuroborreliosis = late (Lyme) neuroborrelios

[duncan]

IMO, an argument can be made that the IDSA may simply prefer to avoid the subject of either late stage or chronic Bb.

It appears tough for mainstream Lyme interests to even embrace late stage as a broad concern, perhaps because that would belie the success of efforts at containing Lyme to a) predefined endemic areas, and b) acute cases.

Perhaps also contributing to this reluctance is that by casting a spotlight on late stage cases, deficiencies and outright failures in treatment protocols would inevitably rise to the surface for the world to see. So, better to not discuss it.

For instance, how many studies does the NIH have that look at late stage Lyme? How many at chronic?

It would seem to me that an unspoken goal is to keep the focus on acute cases and prophylactic measures.

[X-member]

I move some of the discussion we had in another topic to this thread instead:

http://www.lymeneteurope.org/forum/view ... =10#p41722

I wrote:

The word "chronic" stands for "late".

Duncan replied:

That is only partly accurate. The reality is that late stage is late stage everywhere, but chronic is used differently by some....

I was actually talking about how the word chronic was used in the article in the first post in that thread. The persons who wrote this article talked about chronic (Lyme) borreliosis (= late Lyme disease*), and not about "chronic" in the meaning that some people (no matter if they come from US or not ) use the word "chronic".

* This is something that IDSA actually do not inform about!

[X-member]

And in the article posted by Lorima in the post below, they also use the word "chronic" in the meaning "late" (of long duration).

http://www.lymeneteurope.org/forum/view ... 721#p41706

And the "thing" that some people (mainly from US) "think" is called "chronic Lyme" is actually called a relapse in this article!

A quote:

....6 (22 percent) had improvement but then relapsed,

Overview of Lyme Borreliosis

http://www.merckmanuals.com/vet/general ... iosis.html

A quote:

Clinical and research data indicate that low-level infection in animals, including people, may persist despite antibiotic therapy. In dogs, standard antibiotic doses and treatment for 4 wk have been demonstrated to be effective. If clinical signs recur, the antibiotics mentioned above can be used again, because persistent infection is not the result of acquired antibiotic resistance. Prolonged antibiotic therapy (>4 wk) may be beneficial for animals with continuing disease signs.

And the "thing" in the quote above that some people (mainly from US) think is called "chronic Lyme" is (as you can see) called: "persistent infection"

[X-member]

I move this to this thread:

http://www.lymeneteurope.org/forum/view ... 730#p41765

A quote:

Terms that are used interchangeably:
Acute/early stage
Disseminated/late stage
Chronic/persistent - both meaning an active infection that has failed at least one round of antibiotic treatment
Lyme/borreliosis

In Europe:

Acute/early (stage 1) (EM)
Acute/early disseminated (stage 2) (neuroborreliosis for example)
Chronic/late (stage 3) (chronic neuroborreliosis or ACA for example)

And an active infection after treatment is called acute/early or late/chronic persistent borreliosis after treatment.

[velvetmagnetta]

I think I (finally!) understand what you have been saying/asking: Why is there even a distinction being made between "chronic" and "late-stage" infection? European doctors have not needed to make this distinction to treat late/chronic Lyme, so why should they now, now that doctors from the US are finally getting into the game?

(If I am still wrong, please let me know! )

To me, as someone who responded very poorly to treatment with antibiotics (perhaps because of an uncontrollable and eternal Herx reaction? I don't know), it is extremely important to know the source of my continuing symptoms. A persistent borrelial infection would need more antibiotics that my body just can't take.

And an ongoing infection would also mean that, sometime in the future, my symptoms may get worse because the bacteria is still alive and multiplying. But, on the other hand, if the bacteria is dead, then something else (related to a past Lyme infection) is the cause of my unremitting symptoms. If this is so, then no amount of antibiotics is going to help.

Also, if the bacteria is all dead, what on earth is wrong?

1) Is it auto-immune in nature (my auto-immune tests keep coming out negative (ENA and ANA))?

2) Is it left-over immunogenic Lyme debris?

3) Is it permanent or temporary damage done by a past Lyme infection?

4) Is it a combination of the above? Or is it something else entirely?

Though most chronic Lyme problems are from catching Lyme in its late disseminated stage, some early/acute infections treated early go on to become a chronic (ongoing) problem. Conversely, some late-stage infections treated after the bacteria has disseminated can, indeed, be cured with just a few weeks of antibiotics.

For me, "chronic" as opposed to "late-stage" is an important distinction that would inform my treatment options as well as my prognosis.

[X-member]

I have now given you the definitions that is used in Europe (and by some people in US).

IDSA actually do not deny chronic (Lyme) neuroborreliosis, but IDSA call it late (Lyme) neuroborreliosis instead.

And that was what I and Martian was trying to say in the thread below:

http://www.lymeneteurope.org/forum/view ... f=5&t=5721

And if someone think that it is still an (early or late) active infection after treatment, the best thing to do is to contact a skilled physician.

[ChronicLyme19]

IDSA actually do not deny chronic (Lyme) neuroborreliosis, but IDSA call it late (Lyme) neuroborreliosis instead.

But those can be two separate things. They acknowledged the infections can be serve with late neuroborreliosis, but even if they don't call our chronic lyme specifically it's an error of omission.

And if someone think that it is still an (early or late) active infection after treatment, the best thing to do is to contact a skilled physician.

The problem with that is you may bounce around between tens of doctors who say that this can't happen because the IDSA says all lyme is cured with one short course of abx. So yes they might not have called chronic lyme out specifically, but by saying all lyme is cured easily with one course of abx, they are inherently saying persistent borreliosis doesn't exist. At best most of the time all you get is a puzzling blank stare rather than an outright denial you still could be infected.

[X-member]

I am talking about what chronic (Lyme) neuroborreliosis stands for, not what IDSA say about an active infection after treatment.

Have you checked the treatment studies regarding late Lyme?

[velvetmagnetta]

X-member wrote:

And if someone think that it is still an (early or late) active infection after treatment, the best thing to do is to contact a skilled physician.

[X-member]

Do you velvetmagnetta, think that my advice was wrong?

BTW, this it what IDSA say in their guidelines:

It is important to realize that guidelines cannot always account for individual
variation among patients. They are not intended to supplant physician judgment
with respect to particular patients or special clinical situations. The Infectious
Diseases Society of America considers adherence to these guidelines to be
voluntary, with the ultimate determination regarding their application to be made
by the physician in the light of each patient’s individual circumstances.

http://www.idsociety.org/uploadedfiles/ ... isease.pdf