General outcomes after discontinuation of treatment

Medical topics with questions, information and discussion related to Lyme disease and other tick-borne diseases.
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Re: After discontinuation of treatment, there are 3 options

Post by X-member » Fri 13 Jan 2012 21:32

I found info about the medical term refractory on the internet.

You can use it i two ways (when it comes to an infection).

"Refractory to treatment"

or

"refractory to cure"

They (in the German info) used it when it comes to treatment.

Joanne60
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Re: After discontinuation of treatment, there are 3 options

Post by Joanne60 » Mon 13 Feb 2012 16:25

An interesting thread - I am quite sure that nothing can be quite so simple as 3 options where Lyme is concerned but after stopping, starting increasing and decreasing antibiotics very many times I seem to now at last be in the second stage. It is now a year since I stopped antibiotics after nearly 4 years of them. I still have some minor Lyme like symptoms but even they are improving over time.

It took 4 years to diagnose me and I was on steroids for misdiagnosis of PMR so no doubt my recovery was compromised.

I had a clincial diagnosis by my GP and eventually supported by LLMD my tests were negative but as I responded well to a chance course of antibiotics which led GP to suspect Lyme Disease the history of bites and rash were all documented on her computer.

My treatment was very much a hit and miss affair amoxycillin worked well doxy less well and a combination of Clarithromycin and amoxy worked the best, again put on more by accident than any intention to treat Lyme.

It is a long time since I looked at Lyme net Europe and I had not realised what a useful resource it has become. I am interested to see some familiar names but saddened to see one or two rather nasty comments from some people, sad to see some incapable of having a different opinion without being nasty.

Nothing is simple where Lyme is concerned and only by reading the literature can we start to figure out what helps us as individuals and discuss with our treating doctors whether they are Lyme literate or not.

Best wishes

Camp Other
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Re: After discontinuation of treatment, there are 3 options

Post by Camp Other » Wed 15 Feb 2012 8:51

Hi Joanne,

I'm glad you found treatment that worked for you and that you are doing better these days. It seems that different treatments work for different people and I wish it were clearer why some work for some people and not others.

Lymenet Europe has a lot of good resources and scientific research, and I've had a number of interesting conversations with people here. It's true, there are a wide variety of opinions here, and sometimes discussions can get a little contentious. Some people here are more in support of the IDSA's guidelines and think they are reasonable as they are, and will argue the point - even as a number of people disagree in return. For anyone who is not prepared to hear a dissenting opinion, this isn't the place.
"Nothing is simple where Lyme is concerned and only by reading the literature can we start to figure out what helps us as individuals and discuss with our treating doctors whether they are Lyme literate or not."
Hear, hear.

Joanne60
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Location: Guildford Surrey UK

Re: After discontinuation of treatment, there are 3 options

Post by Joanne60 » Wed 15 Feb 2012 22:05

Hi Camp It was through your blog and then a Google alert that drew me into looking at Lymenet Europe once again.

I have been impressed, busy reading more interesting posts again today especially in the Science section.

Thank you for some of your interesting questions and posts.

Not sure I can cope with the viciousness of some posters they just seem to have an agenda. Long term antibiotics might not be the way to go for some but certainly no one really knows nor can they dictate over the Internet what should or should not be prescribed.

I am thankful that my two treating doctors helped me find my way through this mess of Lyme - I was also lucky in that I was treated through our NHS so cost was minimal only a few private consultations very inexpensive if compared with the NHS/private consultation (recommended by our 'expert' microbiologist and reputed to be taking an interest in Lyme Disease) who wrote I had Lyme Neurosis from reading too much on the internet LOL! I didn't have access to the Internet and it was my GP who suspected Lyme and had referred me because there had been other local cases NHS positive serology and I had responded so well to a antibiotics (plus history of bites and EM's). I don't think GP was terribly impressed by that Consultant's letter nor his recommendations that I had ME/CFS and should try CBT and anti depressants( not that I had depression).

Now I do have access to the internet, I don't mind being told I have a Neurosis- I find the controversy and the politics mind boggling- the more I read coupled with my personal experiences the more disgusted I am of the lengths some folks go into denying this illness in it's chronic form and yet can not support their claims of treatment success after a couple of weeks antibiotics with any scientific proof,nor do they even seem to care about providing symptom management.

I haven't met/ heard of anyone here in the UK crippled for years with arthritis and muscle weakness following tick bites, who has fully recovered on just oral antibiotics so consider myself extremely lucky.

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Re: After discontinuation of treatment, there are 3 options

Post by X-member » Mon 16 Apr 2012 0:04

More from Dr Marie Kroun (about microscopy, but it is some info that can help us to know if we need treatment or not, too):

http://lymerick.net/videomicroscopy.htm

A quote (more to read on the link):
It is important to understand that “a probable spirochetosis” or even certain Borrelia infection diagnosed by microscopy or any other ANTIGEN DETECTION METHOD is NOT the same as diagnosing 100% THE CAUSE, why this particular patient is feeling CHRONICALLY ILL!

Any other possible cause for any of the patient symptoms / clinical signs – like myxoedema (hypothyroid and other hormone disturbances and autoimmune phenomena are often found to accompany (is it caused by?) LATE Borreliosis) causing both chronic fatigue, mental depression etc. – should of course be found and addressed properly too, if found in the patient!

It is important to understand that Borrelia carriers without recurrent relapses in their history probably won’t benefit much clinically from antibiotic treatment, as long as their microbes still reside dormant, inactive within their deep tissues, i.e. as long they are being asymptomatic!

Dr. Bozsik estimates that 10% of all people in Europe might carry Borrelia burgdorferi, see his comment in The Lancet 2004; 363:901 (full text after free registration and login); most of these carriers are probably feeling healthy most of their life, i.e. are not feeling chronically ill from their persistent, but luckily for them INACTIVE, latent persistent Borrelia infection!

It is important to understand that Borrelia burgdorferi can only be hit by antibiotics, when they are active and proliferating! – i.e. during the patients SYMPTOMATIC PERIODS! – which can be judged ONLY by patients detailed symptom log, especially if it shows the for Borrelia typical cyclical pattern repeatedly! – combined with multiple tests able to diagnose ACTIVE Borrelia infection specifically, and other test done to out rule other possible causes of the patients symptoms!
No, Bagge it is not me who have written all those !!! in this text above! ;)

Maybe it is more common to use many !!! in Scandinavia? Dr Marie Kroun is from Denmark, and I am from Sweden.

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Re: After discontinuation of treatment, there are 3 options

Post by X-member » Tue 29 May 2012 15:40

After the long discussion in the topic below:

"Wormser et al cite flaws in Embers Rhesus Macaque Study"

http://www.lymeneteurope.org/forum/view ... f=5&t=3843

I think I need to remind you of this (from the post above):
It is important to understand that Borrelia burgdorferi can only be hit by antibiotics, when they are active and proliferating! – i.e. during the patients SYMPTOMATIC PERIODS! – which can be judged ONLY by patients detailed symptom log, especially if it shows the for Borrelia typical cyclical pattern repeatedly! – combined with multiple tests able to diagnose ACTIVE Borrelia infection specifically, and other test done to out rule other possible causes of the patients symptoms!

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inmacdonald
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Re: After discontinuation of treatment, there are 3 options

Post by inmacdonald » Thu 19 Jul 2012 19:26

Paraphrase of remarks by Dr Benjamin Luft
Institute of Medicine symposium Oct 2010
Question and Answer Session following his invited Lecture:

Lyme Disease is a relasping condition.
Relapses are to be expected.[/
size]

Please tune in the the video on the IOM website for the lecture by Benjamin Luft MD
and for hs remarks during the question and answer session which followed.

Best,
A

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Re: After discontinuation of treatment, there are 3 options

Post by X-member » Wed 17 Oct 2012 23:35

When I started this topic I had some problems with the word "options". Is there a better word to use instead?

Claudia
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Re: After discontinuation of treatment, there are 3 options

Post by Claudia » Wed 17 Oct 2012 23:43

Maybe "general outcomes."

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Re: General outcomes after discontinuation of treatment

Post by X-member » Thu 18 Oct 2012 0:29

Thank you, Claudia!

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