The Phenomenon of "Chronic Lyme Disease"

Medical topics with questions, information and discussion related to Lyme disease and other tick-borne diseases.
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Re: The Phenomenon of "Chronic Lyme Disease"

Post by X-member » Wed 8 Aug 2012 21:07

Tosho:
..are you aware that some scientists use term chronic Lyme disease in exactly same meaning as late Lyme disease?
Yes I am as you can see in the topic below:

"Do IDSA say that it is still late Lyme disease?"

http://www.lymeneteurope.org/forum/view ... =11&t=3773

It was a very loooooong discussion. ;)

RitaA
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Re: The Phenomenon of "Chronic Lyme Disease"

Post by RitaA » Wed 8 Aug 2012 21:21

Hi folks,

I'm going to interrupt as well in case anyone is interested in these notes prepared by the author of the blog "Relative Risk" -- posted just a few hours ago. His highlighting is shown in blue:

http://relative-risk.blogspot.ca/2012/0 ... orway.html
08 AUGUST 2012

"Chronic" Lyme in Norway

Notes from:
Eur J Neurol. 2012 Aug;19(8):1128-35. doi: 10.1111/j.1468-1331.2012.03691.x. Epub 2012 Mar 15. The phenomenon of 'chronic Lyme'; an observational study.
Ljøstad U, Mygland A.

Many patients are confused, and some come forward to newspapers and the internet with their feelings of being misdiagnosed, mistreated, and discouraged. Furthermore, many healthcare providers feel ambivalent when faced with patients who present with disabling symptoms, ambiguous laboratory test results, and an expressed wish of long-term antibiotic treatment. Earlier studies have shown that only a small proportion of patients referred to specialized Lyme disease clinics, have ongoing Bb infection, and a recent review concludes that ‘the assumption that chronic, subjective symptoms are caused by persistent infection with Bb is not supported by carefully conducted laboratory studies or by controlled treatment trials’. The generalizability of these studies is, however, called in question by the spokesmen for existence and severity of persistent Bb infections.

The annual number of reported cases of disseminated Lyme disease in Norway is around 300, with a background seroprevalence of 15–20% in the high-endemic areas.

Our aim was to evaluate possible causes of complaints in Norwegian patients who believe they have ongoing chronic Bb infection, and to assess the patients’ burden of symptoms, psychometric properties, and illness perception.

Patients were eligible if they suffered from symptoms suspected by themselves or their doctor to be caused by ongoing chronic Bb infection. Objective clinical or laboratory manifestations of Lyme disease were not mandatory. They became aware of the study by a small notice in two nationwide newspapers, or by information from others, and were recruited through referral from primary care, other hospitals, or self-referral. They were informed that we wanted to chart symptoms, laboratory results, quality of life, and coping strategies. The first 30 referred patients were included.

Our study population consisted of patients who basically attributed their complaints to chronic Lyme disease. The patients reported many symptoms, 70% were not working, their health-related quality of life was poor, but none met European diagnostic criteria for ongoing Bb infection. Is this a result of dysfunctional diagnostic criteria, dysfunctional patients, or both?

Arguments against ongoing Bb infection are absence of objective neurologic signs, negative CSF findings including CXCL13 and Bb PCR, and no sustained efficacy of a mean antibiotic treatment of 12 weeks. Further, half of our patients were seronegative, and in absence of a clinical picture consistent with ongoing Bb infection, presence of anti-Bb antibodies in the rest can be regarded as ‘serologic scars’ from earlier exposure to Bb.

Nevertheless, even if persistent infection cannot be totally excluded as a differential diagnosis and dysfunctional criteria remains a consideration, we did not find convincing evidences of ongoing Bb infection in any of our patients. Then, what are the causes for the patient’s long-standing complaints?

We could not find more depression, anxiety, or hypochondriasis amongst our patients than reported amongst healthy persons, nor did the three subscores in SF-36 assessing mental health-related quality of life differ between our patients and normative data. Illness perception amongst our patients was, however, characterized by negative beliefs. In summary, we regard ongoing Bb infection as unprobable in our patients, and hypothesize that other well-defined illnesses, permanent tissue damage from earlier infection, autoimmunity, and negative expectations about the symptoms were more important illness predisposing and perpetuating factors than depression, anxiety, and hypochondriasis.
Edited to fix a typo.
Last edited by RitaA on Wed 8 Aug 2012 22:55, edited 1 time in total.

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Re: The Phenomenon of "Chronic Lyme Disease"

Post by X-member » Wed 8 Aug 2012 21:34

Thank you, Rita!

http://clinicaltrials.gov/ct2/show/NCT0 ... se&rank=20

A quote (again) from the link/study above:
Chronic Lyme Borreliosis
But this they changed to (see the first post):
Purposes:  To chart clinical, laboratory, and psychometric profiles in patients who attribute their complaints to chronic Lyme disease.
And if we read in EUCALB:s info, chronic Lyme borreliosis is an ACTIVE infection of a long duration.

And (according to Henry) chronic Lyme disease is a cured infection with NO SIGNS of an ongoing, active infection after treatment.

If they (in the Norwegian study) wanted cases with the US definition of chronic Lyme disease, then they should have written this, and NOT chronic Lyme borreliosis as they actually did.

RitaA
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Re: The Phenomenon of "Chronic Lyme Disease"

Post by RitaA » Wed 8 Aug 2012 21:48

Carina,

Yes, the terminology can be confusing.

Thanks for the link you provided. I think it's important to point this out:
Purpose

The current study is set up to chart clinically and laboratory findings in Norwegian patients with symptoms attributed by themselves or their doctor to ongoing chronic Bb infection. Objectives is to assess laboratory findings in relation to established diagnostic criteria and to form a picture of the burden of symptoms and illness perception in this group of patients. The study is essentially exploratory, and is supposed to raise rather than to test hypotheses.
There is no doubt that some people with late stage Lyme disease and/or post-treatment Lyme disease are unwell. The reason(s) for this are still unclear -- and they are probably not the same for everyone. There's still plenty of research that needs to be done in both Europe and North America.

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Re: The Phenomenon of "Chronic Lyme Disease"

Post by X-member » Tue 18 Feb 2014 2:25

Maybe this information belong in this thread?

http://www.lymediseaseaction.org.uk/lat ... tick-2014/
Unn Ljøstad, MD, professor, neurological department, Kristiansand, Norway: “Chronic Lyme”; diagnostic and therapeutic challenges.

Naming: has chosen “Chronic Lyme” as persistent and ongoing infection with Bb and symptoms> 6 months.

Prevalence:

does it exist? Yes.
is it widespread? No; not judging from Norwegian studies
Criteria for chronic LB

> 6 months duration
objective findings – eg nervous system deficits
lab findings of Bb antibodies in serum/CSF or +ve PCR
other diagnoses excluded

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Re: The Phenomenon of "Chronic Lyme Disease"

Post by X-member » Tue 18 Feb 2014 2:40

From the post above:
does it exist? Yes.
RR:s blog:

Yes, we have no chronic Lyme

http://relative-risk.blogspot.se/2012/0 ... -lyme.html

A quote (from a comment):
Ok, so its not persistent infection.
What can I say? :roll:

Will Wiegman
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Re: The Phenomenon of "Chronic Lyme Disease"

Post by Will Wiegman » Tue 18 Feb 2014 4:57

Chronic Lyme or Borreliosis or Late Stage Lyme are all really the same affliction.

Where previous treatments have failed, the problem lies in the fact that the life cycle of Borrelia in the Central Nervous System has not been understood enough or treated in a way to break the *Spirochete->bleb->spirochete->bleb->spirochete->->->*
cycle that Borrelia takes on when it is attacked by either antibiotics or the immune system.

I was bitten in the Spring of 2009 and treated with 3 weeks of Cipro but that did not kill all the spirochetes hiding in my CNS. I studied countless research abstracts and papers to come up with a pulse protocol that included herbal medicines also. By Summer of 2010 I was 100% free of symptoms.

I was then re-bitten in Spring of 2012 and did the pulse protocol immediately and was 100% symptom free with two months.

Here is how it works:

OK, here is the cure. It works and I've cured myself twice this way...You need 4 antibiotics (15 of each kind) to begin: Doxycycline, Minocycline, Tindamax and Bactrim.

You take Doxy only when you have joint pain but only take one a day.

You take Minocycline + Tindamax together for nervous system symptoms but only take one dose.

You take one fluconazole for digestive problems but only take one.

You take one of the 3 abx doses a day depending on what kind of symptoms you wake up with.

Doxy, Mino and fluconazole kill Borrelia by not allowing it to complete it's cell division. But, an hour and a half after taking Doxy the Borrelia will hide from it according to the good research Dr. Eva Sapi has done. It will also start creating 'blebs' which contain RNA and DNA and can 'hatch' into one new spirochete for each bleb.

Tindamax (or Tigecycline or Flagyl) will kill the Borrelia blebs that contain m-RNA by blocking it's transcription into DNA.

Minocycline and Tindamax can cross the blood barrier to kill it in the brain, spine, and nervous system. Tindamax stops the Borellia from creating their bleb forms when exposed to the Doxy in the Mino.

Bactrim will kill it in the digestive system.

When you have taken all the antibiotics you will probably have some Borrelia spirochete forms left in the capillaries of the brain.

To kill these you will need to drink Wild Cherry Bark extract drops in your favorite drink once a day for a month. Pinella will also work the same way.

Or you can drink Celestial Seasonings Red Zinger tea which contains lemon grass, wild cherry bark and licorice for a month after completing the 45 day antibiotic treatment.

You can also chew up 5 apple seeds every other day for a month after completing the antibiotic treatment to kill any remaining biofilms, blebs and round body forms.

No matter how long you have had Lyme this will work!

I cured myself in 2010 after 3 weeks of Cipro left me with Neuro-borelliosis and again after being re-bitten in the Spring of 2012. The second time took 8 weeks to a FULL cure. I have had NO symptoms for over 2 years now. Good luck!

p.s. I have a degree in Cytology from Indiana University so if anyone wants the scientific papers to back up this cure I will be happy to point the way.

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Re: The Phenomenon of "Chronic Lyme Disease"

Post by X-member » Tue 18 Feb 2014 19:30

From the post above:
No matter how long you have had Lyme this will work!
Are you really sure about that?

General outcomes after discontinuation of treatment

http://www.lymeneteurope.org/forum/view ... arie+Kroun

A quote:

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!

nnecker
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Re: The Phenomenon of "Chronic Lyme Disease"

Post by nnecker » Wed 19 Feb 2014 1:14

Will,can you give any studies that show that Tindamax or Flagyl kills cysts in lab animals that have been inoculated with Bb?

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Re: The Phenomenon of "Chronic Lyme Disease"

Post by X-member » Wed 19 Feb 2014 1:22

Does a discussion about cyst form or treatment, really belong in a thread that is about that some people think they suffer from late Lyme disease, but many of them don't? See the first post.

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