Lyme stages and definitions

General or non-medical topics with information and discussion related to Lyme disease and other tick-borne diseases.
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Re: Lyme stages and definitions

Post by X-member » Wed 28 Dec 2011 1:56

CO wrote (this is mainly an answer, or info to "some" members in this forum who don't understand this):
The IDSA says that there is no such thing as persistent infection AFTER patients have received antibiotics according to IDSA Guidelines
I have today posted some treatment guidelines or recommedations from Europe, in another topic.

And not in any of those, the IDSA-treatment is given! Maybe someone from Norway, can have the same treatment.

So, what IDSA say can not be used in (almost) any Lyme case from all those countries.

But "some" people in this European forum, act like it!

And, I wonder if they have named the article below, in another way, have we really had this problem with the defintions, then?

A Critical Appraisal of “Chronic Lyme Disease”

http://www.nejm.org/doi/full/10.1056/NEJMra072023

What should have happend if they instead have called it?:

A Critical Appraisal of “Late Lyme Disease”

Because that is what they also say! It is exactly the same thing!

They don't want to admit that a Lyme infection can persist after treatment = and then (after treatment) be late or chronic.

Late = of long duration
Chronic = of long duration

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Re: Lyme stages and definitions

Post by X-member » Sun 1 Jan 2012 23:48

http://medtextfree.wordpress.com/2011/0 ... ospirosis/

"Chapter 167 – Spirochete Infections: Lyme Disease and Leptospirosis"

Quote (but it is more info on the site):
The third or late stage of disease can occur after a long disease-free period, which can be months to years, and may involve recurrent manifestations. Late stage can occur in spite of early antibiotic treatment. The hallmark manifestation of this stage is chronic, relapsing arthritis.[1] [7] [8] [9] [10] The knee is the joint most commonly affected ( Fig. 167-2 ). Skin changes include a rash known as acrodermatitis chronica atrophicans, which eventually resolves, leaving atrophy of the skin and underlying structures. Late neurological manifestations in this stage include encephalopathy, demyelination, and dementia. The ocular manifestations occur in all three stages, and they are summarized in Table 167-1 .

Henry
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Re: Lyme stages and definitions

Post by Henry » Mon 2 Jan 2012 19:28

I have trouble distinguishing between "late complicated Lyme disease" and what we in the U.S. call "chronic Lyme disease". I have the strong feeling that neither has anything to do with Lyme disease, but falls within the purview of what some call "medically unexplained symptoms" (MUS) that may not even be due to an infectious disease in the first place. A recent report issued by the Institute of Medicine notes that about 116 million people in the U.S. -- about 30% of the population-- is burdened with some form of undiagnosed acute and/or chronic pain. It is reasonable to assume that many of those who believe that they have chronic Lyme disease might be included in this 116 million cohort. That explains why some people go from one physician to another -- or try one remedy after another-- to no avail, because they refuse to discard the concept of chronic Lyme disease and examine other possible causes for their symptoms. There is the very real possibility that this may not be an infectious disease problem at all, but a problem that requires an unbiased, broad-based multidisciplinary approach to solve.

Henry

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Re: Lyme stages and definitions

Post by X-member » Mon 2 Jan 2012 19:48

Henry, this topic is about:

Lyme stages and definitions

And if you don't understand what late stage or stage 3 Lyme is, I give you some info:

From CDC (about US-Lyme):

http://www.cdc.gov/lyme/signs_symptoms/
Late disseminated stage (months-to-years post-tick bite)

Approximately 60% of patients with untreated infection may begin to have intermittent bouts of arthritis, with severe joint pain and swelling. Large joints are most often affected, particularly the knees3. Arthritis caused by Lyme disease manifests differently than other causes of arthritis and must be distinguished from arthralgias (pain, but not swelling, in joints).
You can find info about European Lyme (definition and stages) earlier in this topic!

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Re: Lyme stages and definitions

Post by Camp Other » Mon 2 Jan 2012 20:14

Henry said,
"I have trouble distinguishing between "late complicated Lyme disease" and what we in the U.S. call "chronic Lyme disease". I have the strong feeling that neither has anything to do with Lyme disease, but falls within the purview of what some call "medically unexplained symptoms" (MUS) that may not even be due to an infectious disease in the first place."
What you've stated here is in line with what the IDSA has stated.

To quote Dr. Lawrence Zemel, who engaged in an online discussion about this last year:

"Approximately 10 percent of people who have had Lyme Disease will develop persistant symptoms following appropriate treatment. Most of these patients are no longer considered infected. Previous research has shown that at least 50 percent of people with "chronic Lyme Disease" never had Lyme Disease in the first place. We as physicians are obligated to treat these patients in the most humane and safe way possible."

Source: http://www.courant.com/health/mc-health ... .htmlstory

Similar statements have been made elsewhere.

However, even if the above is true (and I'd like to know where Dr. Zemel got his statistics; he does not offer a source) - then the remaining 50% of the people with "chronic Lyme Disease" had Lyme disease at some point, and 10% of those who have had Lyme disease (assuming these were probable or confirmed cases to the CDC) develop persistent symptoms following treatment.

It's that 10% who has had Lyme disease and goes on to develop persistent symptoms that I would focus on in discussions here.

Those in that 10% that is documented by even the most conservative of estimates is what I think most people want to understand. And I do, as I was clinically and serologically diagnosed with Lyme disease, had the tick which had bitten me in my hands and an EM rash on my skin, and have gone on to suffer with persisting symptoms.

Whether or not 50% of a certain patient group never had Lyme disease in the first place is not relevant to me. What's at issue is what has happened to the 10% of us.

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Re: Lyme stages and definitions

Post by Spanky » Mon 2 Jan 2012 20:27

"Henry":
I have the strong feeling that neither has anything to do with Lyme disease, but falls within the purview of what some call "medically unexplained symptoms" (MUS) that may not even be due to an infectious disease in the first place.
Are you saying that you don't believe in "post-Lyme syndrome"?
There is the very real possibility that this may not be an infectious disease problem at all, but a problem that requires an unbiased, broad-based multidisciplinary approach to solve.
Well, based upon my own personal experience, I wouldn't bet bigtime bucks on that one, if I were you...I suspect that the problem may well not be continuing infection...but you may be dealing with the after-effects of the initial infection.

As I believe I have said, I was perfectly healthy before the tickbite...and after treatment, continued to suffer for another ten years.

I think...I suspect...that part of that was probably due to an undetected autoimmune thyroiditis.

Was it triggered by the Lyme infection, though? Had no symptoms before the tickbite.

I also suffered from unexplained bouts of what seemed very much like 'TIA's...and would induce slurred speech. Since taking a daily lowdose aspirin, I have not had another.

The problem, though...is that it was me, and not my doctors, who recognized the symptoms and asked for the appropriate testing. We're not getting much help, here.

But also...I do think that what got me 'over the hump', so to speak...was simply looking for an explanation OTHER than continuing infection.

But again, over the years, there are just too many people involved and too many people describing similar symptoms...to lay this off on some 'MUS' type thing.

Has there ever been a sort of survey done of PLS'ers...to see what the symptoms are? How common they are?

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Re: Lyme stages and definitions

Post by Camp Other » Mon 2 Jan 2012 20:32

Henry said,
"A recent report issued by the Institute of Medicine notes that about 116 million people in the U.S. -- about 30% of the population-- is burdened with some form of undiagnosed acute and/or chronic pain. It is reasonable to assume that many of those who believe that they have chronic Lyme disease might be included in this 116 million cohort."
I've read the same report.

While this is true, and the cause of such pain is unknown - it's not entirely unreasonable to assume that some subset of these 116 million people may have undiagnosed late stage Lyme disease that has contributed to their pain. To state all of them have either chronic Lyme disease or Post Lyme Disease Syndrome would be unrealistic, but I think it's possible some of these people went undiagnosed just based on the CDC's statements that the percentage of actual cases of Lyme disease out there are much higher than the number reported to them. Especially in endemic regions.

The problem one runs into is that there are also a certain percentage of people with MUS who do not have Lyme disease and never did (who want to have something known as a cause) - and then there are those who have no known history of a tick bite and no memory of an EM but at least some positive serology (even if not the full CDC band requirement). Did the latter group have Lyme disease - and are their current symptoms the result of previous or current Lyme disease? Or is something else causing their symptoms now, and any Lyme disease they had happened a long time ago?

I don't want to get into discussing the validity of serological testing here - I just wanted to point out that it's easier to determine that someone definitely has at least had Lyme disease if they have 1) a history of a tick bite, 2) history of an EM rash, and 3) positive serology. Anything outside of this makes it harder to provide evidence for the presence of current or past infection.

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Re: Lyme stages and definitions

Post by Camp Other » Mon 2 Jan 2012 20:44

Spanky said,
"...over the years, there are just too many people involved and too many people describing similar symptoms...to lay this off on some 'MUS' type thing.

Has there ever been a sort of survey done of PLS'ers...to see what the symptoms are? How common they are?"
I agree.

I think that if you look at the patient population that does have a known history of a tick bite (at the very least) who goes on to suffer persisting symptoms after antibiotic treatment (especially if treatment has been delayed) there are too many describing similar symptoms to state that something else is the cause.

I want answers to the same questions you have. A study was completed this past summer in Norway that was supposed to characterize patients with chronic Lyme disease/PLDS. I think the NIH/NIAID has funded similar studies before.

That Norweigan observational study: http://clinicaltrials.gov/ct2/show/NCT01151150

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Re: Lyme stages and definitions

Post by Henry » Mon 2 Jan 2012 20:47

Spanky: Depending on ones genetic background, there is residual damage resulting from a CURED Borrelia infection that takes time to cure, in the absence of further antibiotics. As I've indicated previously and elsewhere on this website, the percentage of patients with Lyme induced arthritis, who experience recurrent arthritic episodes, decreases by year of disease and disappears, nine years after diagnosis and treatment -- without the need for further antibiotic treatment (Steere et al. Ann. Intern. Med. 107; 725, 1987). Alendini et al. have demonstrated the presence of auto-antibodies reactive to nerve proteins in more than 40% of the patients enrolled in Mark Klempner's chronic Lyme disease studies. Finally, it has been reported that Borrelia infection generate auto-antibody against thyroid proteins. Obviously, it is difficult to generalize since whether these types of reactions occur at all -- and their severity-- depends to a large degree on their genetic background. However, they argue against the possibility that the symptoms associated with such reactions are due to a persistent, uncured infection that requires extended antibiotic therapy to cure. Treating until the symptoms disappear may not be the smart thing to do. In that context, I don't disagree with you.

P.S. I can supply references for the last two point if you want them. I just don't have them handy at the moment.

Happy new year,

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Re: Lyme stages and definitions

Post by Spanky » Mon 2 Jan 2012 21:10

"Henry":
Alendini et al. have demonstrated the presence of auto-antibodies reactive to nerve proteins in more than 40% of the patients enrolled in Mark Klempner's chronic Lyme disease studies.
Finally, it has been reported that Borrelia infection generate auto-antibody against thyroid proteins. Obviously, it is difficult to generalize since whether these types of reactions occur at all -- and their severity-- depends to a large degree on their genetic background.
Yes. And this is where I wish we could explore, a bit more, perhaps. But again...I honestly cannot see the logic or reason behind trying to separate a post-infectious process from the definition of the disease.

It just makes NO difference to me whether my symptoms were Lyme, or Lyme-induced. If you are struggling trying to walk...and talk...
However, they argue against the possibility that the symptoms associated with such reactions are due to a persistent, uncured infection that requires extended antibiotic therapy to cure. Treating until the symptoms disappear may not be the smart thing to do.
I personally doubt that MY continuing symptoms were due to continuing infection. Based on the available science...and...my own personal observation.

But for those of us left in post-treatment 'Lyme limbo'...there isn't much help or even advice as to how to manage symptoms.

The reason I started to suspect a thyroid issue...was because of reading other patients' accounts online!

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