Lyme stages and definitions

[X-member]

Very good Swedish info about this:

http://www.medscinet.se/infpreg/allinfo ... p?topic=26

Vilka är symtomen vid en borreliainfektion?
Sjukdomsbilden indelas i tre stadier. Men alla smittade personer genomgår inte alla stadierna, ofta sker en spontanläkning efter genomgången lokal infektion. Symtombilden varierar beroende på vilken typ av borrelia som orsakat infektionen

1.Tidig lokaliserad infektion. Vanligast är ett hudutslag (erythema migrans), en rodnad som uppkommer på bettstället och sen breder ut sig. Det typiska utseendet på hudutslaget är en ringformad rodnad med en central blekhet. Hudutslaget fortsätter att växa efter 2 dygn och är ofta större än en femkrona.
Inkubationstiden är 2-30 dagar efter fästingbettet.


Borreliainfektionen kan läka ut av sig själv och tillfrisknande utan behandling sker sannolikt ofta. Bara cirka 10-15 % av obehandlade individer som har hudutslag, får en spridning av infektionen.

2. Tidig spridd infektion. Symtom från nervsystemet (neuroborrelios) med eller utan föregående hudutslag, ledinflammation med svullnad och rodnad framförallt i en eller flera stora leder, värk i den kroppsdel som fästingbettet suttit och hudutslag. Kortvarig feber kan förekomma i början.

Inflammation i hjärtat, som förekommer i andra delar av världen är sällsynt här.

Den typiska hudrodnaden är det vanligaste symtomet av borreliainfektion i Sverige. Därefter kommer symtom från nervsystemet där framför allt en svår borrande nervsmärta oftast lokaliserad ensidigt i armar, ben, nacke eller rygg är det vanligaste symptomet. Oftast är denna smärta kombinerad med en brännande obehaglig känsla i huden. I nästan hälften av fallen inträffar en halvsidig ansiktsförlamning, men förekommer mindre ofta idag när diagnosen ställs i ett tidigt skede. Vanligt är även att allmän trötthet och generell värk i kroppen.
Inkubationstiden är 7-90 dagar efter fästingbett.

3. Sen infektion. Kroniska hudförändringar, symtom från nervsystemet som över 6 månader och kronisk ledinflammation. En utbred hudrodnad med ”potatisskalshud” (acrodermatit) och ledsvullnad i närheten av acrodermatiten. Ibland även förlamningssymtom.

4. Restsymtom efter borreliainfektion. Förekommer i 25 % av neuroborrelios och framförallt om det gått lång tid innan man behandlats. Läkning fortgår under flera år.

Not a perfect translation with google translate (and partly by me):

What are the symptoms of Lyme disease?

Clinical presentation is divided into three stages. But not all infected persons does not undergo all stages, frequently occurs a spontaneous healing after completion of local infection. Symptoms picture varies depending on the type of Lyme disease that caused the infection

First stage: Localized infection. Most common is a rash (erythema migrans), a redness that arise bite site and then spreads out. The typical appearance of the rash is an annular erythema with a central pallor. Rash continued to grow after 2 days and is often larger than a two pence coin.
The incubation period is 20-30 days after the tick bite.

Borrelia infection can heal by itself and recovery without treatment is likely to often. Only about 10-15% of untreated individuals who have skin rashes, a spread of the infection.

Second stage: Early disseminated infection. Symptoms from the nervous system (neuro-Lyme disease) with or without rash, arthritis with swelling and redness especially in one or more large joints, pain in the organ to tick bite sat and rash. Transient fever may occur in the beginning.

Inflammation of the heart, as occurs in other parts of the world is rare here.

The typical reddening of the skin is the common symptom of Lyme disease in Sweden. Thereafter, symptoms from the nervous system where especially a difficult piercing nerve pain usually localized unilaterally in the arms, legs, neck or back is the most common symptom. Usually this pain combined with a burning uncomfortable sensation in the skin. In almost half of cases occur half-sided facial paralysis, but are less common today when diagnosed at an early stage. It is common also to general fatigue and generalized body aches.
The incubation period is 7-90 days after tick bites.

Third stage: Late infection. Chronic skin changes, symptoms of nervous system over 6 months and chronic arthritis. Widespread erythema with "potatisskalshud" (acrodermatit) and joint swelling near the acrodermatitis. Sometimes even paralysis symptoms.


4th (stage): Residual symptoms after Lyme disease. Occurs in 25% of neuro-borreliosis and especially if there has been a long time before treatment. Healing will continue for several years.

And I just had to give this to you, sincy one person here in the forum (as it lookes) think that neuroborreliosis is another word for late/stage 3 Lyme! And I think, but I am not sure, that that person (in this forum) actually know Dr Dotevall (se info in the info on the site) in person.

But neuroborreliosis is not stage 3/late Lyme, it is only stage 2 (=early Lyme as you also can see in the text above)!

In Sweden a late neuroborreliosis is called chronic neuroborreliosis, or late neuroborreliosis, NOT only neuroborreliosis!

In US I think that chronic/late neuroborreliosis is very rare, just like it is in Sweden.

[X-member]

This was interesting:

4th (stage): Residual symptoms after Lyme disease. Occurs in 25% of neuro-borreliosis and especially if there has been a long time before treatment. Healing will continue for several years.

Why don't use stage 4 instead of using a term that only create a lot of confusion? As soo many of you (as it looks) don't understand the medical term: chronic ??

Chronic = of long duration/late (this term DOES NOT stand for "hard-to-cure" or "for ever", it only stand for HOW LONG you have had the conditon)

Acute = early

[Camp Other]

Carina said:

Why don't use stage 4 instead of using a term that only create a lot of confusion? As soo many of you (as it looks) don't understand the medical term: chronic ??

Chronic = of long duration/late (this term DOES NOT stand for "hard-to-cure" or "for ever", it only stand for HOW LONG you have had the conditon)

Why don't "we" use stage 4?

As far as I know, there isn't one group I can refer to known as "we".

A lot of the terminology around Lyme disease developed in the United States. It wasn't viewed as being a Borreliosis at first. The language around Lyme disease first developed out of use by American scientists, doctors, and researchers. And then patient and advocacy groups in the US developed their own meaning for similar terms.

The IDSA doesn't recognize a "stage 4". What you call "stage 4" is called "Post Lyme Disease Syndrome" by the IDSA.

The IDSA doesn't think chronic Lyme disease exists. It does think stage 3 or late-stage Lyme disease exists. But chronic Lyme disease does not exist.

Patients in the US call what you call "stage 4" Lyme disease and sometimes ALSO "stage 3" Lyme disease "chronic Lyme disease".

Do you find the above confusing? For what it's worth, I have found it confusing because different people use such terms in different ways.

[X-member]

Hello!

But you can see, that they (in the Swedish info) don't confuse what they call "stage" 4, with all the rest of the stages?

But this many people (especially from US) do. Why they do this I don't know, but I am (almost 100%) sure that physicians in US (even IDSA) use the same stages.

You say that "IDSA say", but it this really based on what IDSA say, or it this based on a studie or studies not made on cases with late (or chronic) Lyme disease?

As you can see in the European info, chronic (=of long duration) Lyme is the same thing as late (=of long duration) Lyme! They (in the European info) do NOT talk about any cases that already have had treatment.

And, what gets me soo angry, is that this is an European forum, and I do not like to be told, that something that exist and is clearly defined in European info, don't exist!

Do you understand my point?

[X-member]

4th (stage): Residual symptoms after Lyme disease. Occurs in 25% of neuro-borreliosis and especially if there has been a long time before treatment. Healing will continue for several years.

The above is the same thing as "Post Lyme Disease Syndrome".

IT is the person who wrote this Swedish info that have put is as nr: 4 (4:th)

To not be confused with the other stages.

[X-member]

This is a study on European early and late/chronic Lyme (and as you can see, such studies exist):

http://www.ncbi.nlm.nih.gov/pubmed/3056202

Antibiotic therapy of early European Lyme borreliosis and acrodermatitis chronica atrophicans.
Weber K, Preac-Mursic V, Neubert U, Thurmayr R, Herzer P, Wilske B, Schierz G, Marget W.

Department of Microbiology, University of Munich, Federal Republic of Germany.

Abstract

In a study on 121 consecutive patients with erythema migrans, 65 patients obtained oral penicillin, 36 tetracyclines, and 20 amoxicillin-clavulanic-acid. Follow-up was carried out for a median of 29, 17, and 7 months, respectively. In another limited trial on 29 patients with acrodermatitis chronica atrophicans (ACA), 14 patients received oral penicillin, 9 parenteral penicillin, and 6 tetracyclines. There was no statistically significant difference among treatment groups in both therapeutic trials, with the exception of different follow-ups due to the nonrandomized study design and different occurrence of the Jarisch-Herxheimer reaction in patients with erythema migrans. Later extracutaneous manifestations developed in 27% of the patients with erythema migrans and in 47% of the patients with ACA despite antibiotic therapy. We could not prove the superiority of any antibiotic tested in either early or late European Lyme borreliosis.

And here you have studies on Post Lyme Disease Syndrome (NOT on Late or chronic Lyme):

"Two Controlled Trials of Antibiotic Treatment in Patients with Persistent Symptoms and a History of Lyme Disease"

http://www.nejm.org/doi/full/10.1056/NE ... 7123450202

[X-member]

And, Dr B (ILADS) has also told very clearly (I will give you the info when I find it again) what IS an uncured Lyme AFTER treatment.

He DO NOT talk about any Post Lyme Disease Syndrome at all, but "some" people on the internet "miss" or ignore or don't read this. And "they assume" a lot of us who suffer from late (or chronic) Lyme instead suffer from PLDS.

But both sides do wrong!

There is people who suffer from chronic Lyme, who "think" this term stands for "for ever" (instead of for how long you have had Lyme), but there is also people from "the other side" that "think" that those who say that they suffer from chronic Lyme are saying that "it is for ever, and can not be cured".

In Sweden, Germany, Hungary (and so on) and Dr B (in US), they DO use the term chronic correct!

But those "who talk in IDSA:s name" use the term chronic wrong (in many, many cases).

Why there is some persons who think that they have to "defend IDSA" I don't know, but if they intend to continue to do that, I would like them to use the term chronic correct, otherwise they are not educated enough to talk about it at all!

Am I hard on them? Yes, I am, because if they don't understand medical terms, then they should not say anything in a discussion about, or when it comes to questions about a disease!

[X-member]

Camp Other wrote:

The IDSA doesn't recognize a "stage 4". What you call "stage 4" is called "Post Lyme Disease Syndrome" by the IDSA.

http://campother.blogspot.com/2011/02/i ... -real.html

According to the IDSA, this means:

"Category 4: Symptoms of unknown cause after antibiotic therapy and resolution of an objective manifestation of Lyme disease.

Why argue about that?

Such cases exist, but WHO do we actually have the discussion about this with?

When I tell my story (in a forum like this) I have answers from people that I don't even know who they are, who say (or act like) that my late/chronic Lyme (that I suffered from at least 8 years before treatment) don't exist.

It is those persons that should stop "talk as if they know everything".

A physician check the patients medical history (at least if the physician know what he is doing), but a person (on the internet) don't do that, and someone act like everyone with a Lyme infection suffer from PLDS.

I did not even suffer from any "possible" PLDS for 8 years, because all those years my Lyme infection still wasn't even diagnosed!

I don't give this answer to Camp Other, I give this answers to the people that read this, and need to understand that they can not solve this problem by "attacking the patient" with the wrong info!

[X-member]

We have another problem in Sweden, because in Sweden we have (a lot of) patients (and physicians) who think that neuroborreliosis (=stage 2/early Lyme) is another word for late Lyme (=stage 3/late Lyme). And because of this, Swedish neuroborreliosis-specialists have been criticized.

And, what happens in Sweden, is when you talk to someone (this could be a physician) who don't understand this, you get another wrong answer! They answer you "as if you suffered from a neuroborreliosis". And if you don't suffer from this (=have e negative spinal tap) you don't suffer from Lyme at all.

If I remember correct, it is 1/6 of the Lyme cases in Sweden, that also have a neuroborreliosis, but when they have checked out what the physician write as a diagnose, they (in most cases) write: Neuroborreliosis

And I have found one explanation for this!

I the Swedish recommendations, there is no information of all the Lyme stages (and typical symptoms), so the only info they find (if the patient not have arthritis or ACA) in the recommendations, is neuroborreliosis.

So, we have many Lyme cases who say or think that they suffer from neuroboreliosis, instead of the correct diagnose, late (or chronic) Lyme!

Here is some more info about late/chronic Lyme (from emedicine):

http://emedicine.medscape.com/article/330178-clinical

Stage 3 - Chronic Lyme disease (months to years after infection and may occur after a period of latency)
Late or chronic Lyme disease refers to manifestations, primarily rheumatologic and neurologic, that occur months to years after the initial infection. The neurologic abnormalities are apparent in both the central (CNS) and peripheral (PNS) nervous systems. Typical presentations of late-stage neurologic Lyme disease include subacute encephalopathy, chronic progressive encephalomyelitis, and late axonal neuropathies, as well as symptoms consistent with fibromyalgia.

Borrelia encephalomyelitis is a rare but severe and slowly progressive syndrome that occurs in late disseminated disease. Symptoms can progress gradually or in a relapsing-remitting pattern, with partial improvement after the attacks. The most common clinical manifestations of Borrelia encephalomyelitis are hemiparesis, ataxia, seizures, cognitive impairment, bladder dysfunction, and hearing loss. Myelitis is present in 50% of patients with late neuroborreliosis. Progressive spastic paraparesis or quadriparesis is common.

Acrodermatitis chronica atrophicans also develops during this phase (see the image below and females, especially older patients, tend to be more commonly affected. Unlike erythema migrans, acrodermatitis chronica atrophicans tends to occur acrally, especially on the dorsal surfaces of the hands, feet, knees, and elbows. Early on, a minimally symptomatic erythema tends to occur in these locations. Initially, there is discoloration and inflammation; later, severe atrophy is noted.

I have marked the info that tell everyone that I (and many of the more educated European physicians) actually use the correct term! And this should be understood by everyone in an European Lyme forum!

No matter what IDSA say or do!

[Camp Other]

Carina,

I think that the reason why the issue of how the IDSA defines Lyme disease has come up is because Lyme disease was discovered in America. Even though it's true that Borreliosis was already a disease known of in Europe, Lyme disease was historically treated differently at first... partially because of Steere's early assumption that the causative agent for Lyme disease was a virus. He didn't suspect Borreliosis.

There is a whole history behind why these terms have been used. If one even looks at earlier American (1980's, 1990's) research on Lyme disease, the NIH and IDSA members used the term "chronic Lyme disease" to mean "late stage" or "stage 3" Lyme disease. Over time, the IDSA has ceased to use the term "chronic Lyme disease" as patient advocates in the US have used "chronic Lyme disease" to mean a persistent infection in patients who have already received antibiotic treatment. The IDSA says that there is no such thing as persistent infection AFTER patients have received antibiotics according to IDSA Guidelines. There is little discussion about treatment failure, although studies cited in the IDSA 2000 and 2006 Guidelines mention treatment failure including early treatment failure - and that some study participants were given another round of antibiotic treatment after the first failed treatment.

I am learning from you that in different countries in Europe they are using the term "chronic Lyme disease" differently. I agree this is something that should be noted in this group. So much publishing of Lyme disease related research happens in the US, too, though, and since Lyme disease was discovered in the US, one has to be reminded of what such terms mean to the scientists who publish research on it. Context is important.

One thing that you may see mention of elsewhere on this site is a discussion of how the IDSA has influenced the development of guidelines in European countries. There have been a number of joint research ventures between IDSA members and European researchers and they have published together. The IDSA has had some influence on Lyme disease treatment guidelines worldwide and with EUCALB. So this is something to also keep in mind when reviewing the terminology and treatment guidelines used by different countries.