General outcomes after discontinuation of treatment

Medical topics with questions, information and discussion related to Lyme disease and other tick-borne diseases.
X-member
Posts: 5112
Joined: Mon 30 Jul 2007 18:18

General outcomes after discontinuation of treatment

Post by X-member » Sun 1 Jan 2012 16:10

Sorry, I posted this in the wrong place in the forum (I think), and I hope I post it in the right place now:

From Denmark, Daninfekt:

http://daninfekt.dk/news.php?readmore=21

Efter ophør med behandling er der 3 muligheder:

1. fastholdt bedring uden yderligere flares - gælder typisk folk med kort sygdomsvarighed (maks. 1-2 år) før beh. - god prognose på længere sigt!

2. månedlige flares, hvor bedring imellem flares dog når ned på samme niveau imellem flares; pt. oplever kun fortsat stigende symptomer under særlig stress / immunhæmning, flare aktivitet kan fortsætte i årevis - sårbar situation - en del vil senere opleve tilbagefald => behov for opfølgning / navlesnor til kontaktlæge ved behov, så begyndende tilbagefald kan standses i opløbet!

3. hurtigt tilbagefald med gradvis stigende symptomniveau efter ophør med antibiotika, dvs. pt. "bombes tilbage" til før behandlingsniveau i løbet af ca. 3 måneder; der er typisk nogenlunde samme gode effekt af genbehandling med antibiotika; blandings-infektion(er) / additive faktorer (immunhæmning? hormonelle forandringer? andet?) må mistænkes; dårlig prognose uden behandling!
Not a perfect translation (with google translate and me):

After discontinuation of treatment, there are 3 options:

1: Maintained improvement without further flares - typically applies to people with short disease duration (max. 1-2 years) before treatment. - Good prognosis in the long run!

2: Monthly flares, where recovery between flares, then reaches the same level between flares; patient experiencing only continue increasing symptoms with particular stress / immune suppression, flare activity may continue for years - fragile - some would later experience relapse => need for follow up / “safety net”= be able to contact a doctor when needed, so incipient relapse can be stopped early.

3: Quickly relapse with gradually increasing symptom levels after discontinuation of antibiotics, ie. patient. "bombed back" to pre-treatment levels within approx. 3 months, there are typically the same good effects of retreatment with antibiotics; mixed infection (s) / additive factors (Immune suppression? Hormonal disturbances? Something else?) Must be suspected; poor prognosis without treatment!
Last edited by X-member on Thu 18 Oct 2012 0:28, edited 1 time in total.

Cobwebby
Posts: 1716
Joined: Mon 29 Oct 2007 0:55

Re: After discontinuation of treatment, there are 3 options

Post by Cobwebby » Sun 1 Jan 2012 19:07

Upon further reflection- I would venture to say- at first I fell into the 3rd category-and when finally rediagnosed after two years and bombarded with daily, high dose antibiotics for another two years, I hopefully have moved on up to the 1st category. Have been off treatment now since 2008-and feel as if I am continually improving. :)
The greater part of our happiness or misery
depends on our dispositions,
and not on our circumstances.
Martha Washington

X-member
Posts: 5112
Joined: Mon 30 Jul 2007 18:18

Re: After discontinuation of treatment, there are 3 options

Post by X-member » Sun 1 Jan 2012 19:20

I guess that if it is possible treat/cure the "complications" (as mentioned in category 3), then it is possible to move up to category 1, yes!

Cobwebby
Posts: 1716
Joined: Mon 29 Oct 2007 0:55

Re: After discontinuation of treatment, there are 3 options

Post by Cobwebby » Mon 2 Jan 2012 18:49

Yeah- the "complications" were not recognized as persistant lyme. So for two years I went without proper treatment until I was forced onto disability by my employer. When the reason for my ongoing health issues was finally diagnosed a second time as Lyme and I was treated once again properly my "complications" got better.
The greater part of our happiness or misery
depends on our dispositions,
and not on our circumstances.
Martha Washington

X-member
Posts: 5112
Joined: Mon 30 Jul 2007 18:18

Re: After discontinuation of treatment, there are 3 options

Post by X-member » Mon 2 Jan 2012 18:53

Well said, Cobwebby! 8-)

X-member
Posts: 5112
Joined: Mon 30 Jul 2007 18:18

Re: After discontinuation of treatment, there are 3 options

Post by X-member » Mon 2 Jan 2012 18:56

My "complication", the immune deficiency, the infections specialists "forget" every time! And they only answer with info about uncomplicated Lyme, just like another member do all the time in this forum!

And my other "complication", that I have had undiagnosed Lyme for 8 years before treatment, they "solve" by only giving my GP info about early neuroborreliosis (= stage 2 NOT stage 3).

X-member
Posts: 5112
Joined: Mon 30 Jul 2007 18:18

Re: After discontinuation of treatment, there are 3 options

Post by X-member » Fri 13 Jan 2012 17:25

In this forum we have (or had?) at least one member, that (as it looked) become a member here, to tell us everyone that we "must suffer from something else" because the "major studies" (on US-lyme) say that more abx don't have any effect.

This made me soo angry, because this you can not assume! I have also told people that this is an European forum, and therefore we must also talk about European borreliosis.

But this was misunderstood, and soon a discussion about the 4 major studies begun again! :?

I have given you the German study/summary below many times in this forum, and as you can see in this info, many people actually HAVE effect from a better and longer abx-treatment, and some are actually cured (=need no more abx):

http://www.grin.com/en/e-book/166179/pr ... me-disease
"Prolonged antibiotic therapy in PCR confirmed persistent Lyme disease"

Wolfgang Klemann, MD, PhD
Bernt-Dieter Huismans, MD, PhD
Stephan Heyl, MD, PhD

Abstract: We examined a sample of 90 individuals that had previously received a course of appropriate antibiotics for Lyme disease without experiencing full resolution of their symptoms and had evidence of persistent infection documented by PCR analysis.

Mean duration of symptoms was 9.5 years (range 1 - 40 years). The treatment was adapted to the individual case according to clinical response. Long term antibiotic therapy was initiated and patients were treated continuously for at least 6 months, in some cases several years of intermittent therapy was administered.

About 38,8% of the patients experienced full remission of symptoms while about 56,7% reported a significant improvement, 5,6% of patients were deemed refractory to therapy. Therapeutic modalities are discussed in detail.

Camp Other
Posts: 996
Joined: Wed 2 Mar 2011 4:32
Contact:

Re: After discontinuation of treatment, there are 3 options

Post by Camp Other » Fri 13 Jan 2012 19:51

"About 38,8% of the patients experienced full remission of symptoms while about 56,7% reported a significant improvement, 5,6% of patients were deemed refractory to therapy. Therapeutic modalities are discussed in detail."
Reading this, I have to ask: Wouldn't that 56,7% also be deemed refractory to therapy? I mean, after all, they did not experience a full remission of symptoms. They experienced improvement, they didn't get worse - but they didn't fully recover, either.

Based on my observation of patient forums, I have seen a number of people improve by being on longer therapy, but only a fraction report that they are cured or in remission based on their own reported abilities to go back to work full time and live a normal life.

I would think that within that 56,7% there would likely be a range of improvement, too - some people may experience a little improvement; some people may experience a lot of improvement.

X-member
Posts: 5112
Joined: Mon 30 Jul 2007 18:18

Re: After discontinuation of treatment, there are 3 options

Post by X-member » Fri 13 Jan 2012 20:32

CO what happens if the treatment stop? If we talk about me, I get all my life treathening symptoms back again, and then I can die!

Claudia say something important here:

http://www.lymeneteurope.org/forum/view ... =20#p26324

And (as mentioned in the topic above) in US maybe borreliosis is not so life treathening, but it can absolutely be in Europe (especially if we talk about B Garinii).

The Danish physician (that wrote the info in the first post in this topic) she say, that if you have more problems with abx, then without, then maybe it is better to not be on abx, but other people may not have any problems at all (or only minor problems) with abx, like me for instance.

And we (in this forum) can not know the reasons for why some "must" have abx, and some don't.

One of the German physicians (in the study/summary) is by the way, very good when it comes to children with late borreliosis.

Camp Other
Posts: 996
Joined: Wed 2 Mar 2011 4:32
Contact:

Re: After discontinuation of treatment, there are 3 options

Post by Camp Other » Fri 13 Jan 2012 21:09

Carina said,
"CO what happens if the treatment stop? If we talk about me, I get all my life treathening symptoms back again, and then I can die!"
Hey, I didn't suggest that you stop taking your antibiotics. I'm not a doctor. I'm not you. It's not my decision to make, okay?

What I wrote above had nothing to do with your treatment.

My comment was that even those who show improvement on antibiotics can be considered refractory as well because they are not fully recovered or cured.

Post Reply