Unraveling lyme disease.

Topics with information and discussion about published studies related to Lyme disease and other tick-borne diseases.
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Unraveling lyme disease.

Post by edbo » Sat 28 Jun 2014 22:02

Arthritis Rheumatol. 2014 Jun 25. doi: 10.1002/art.38756. [Epub ahead of print]

Unraveling lyme disease.

Bockenstedt LK1, Wormser GP.
From relative risk's website:

http://rel-risk.blogspot.de/2014/06/unr ... eview.html

Unraveling LD- A Review

Experts from the review,
Unraveling Lyme disease. Bockenstedt LK, Wormser GP. Arthritis Rheumatol. 2014 Jun 25.

Symptoms after Lyme disease treatment

New or recurrent objective signs of Lyme disease appearing after antibiotics should prompt evaluation for reinfection or incomplete treatment. A recent study in which the causative strain of B. burgdorferi was cultured from EM lesions showed that recurrent EM after treatment was due to reinfection rather than a relapse of the prior treated infection.

About 25% of patients with EM resolve clinical disease but continue to experience fatigue, cognitive issues or joint and muscle aches at 3 months after treatment, falling to about 10% at 6 months. Post-treatment Lyme disease syndrome (PTLDS) refers to such symptoms that last for more than 6 months after a documented episode of Lyme disease and are disabling. The frequency with which PTLDS occurs is believed to be substantially less than 10%. PTLDS should not be confused with “chronic Lyme disease”. This name originally referred to late manifestations of the disease, but has been usurped as a label for clinical syndromes that may or may not be associated with previous Lyme borrelia exposure.

The reasons for persistent symptoms in some patients after treatment for Lyme disease are not known. Theories include residual damage to tissue, slow resolution of the inflammatory state, and/or a form of cytokine-induced sickness behavior due to previously high levels of circulating cytokines. Systemic inflammatory cytokines exert adverse effects on neurobehavioral function in other conditions, independent of a CNS infection. Nonspecific symptoms such as fatigue and pain are common in the general population as well.

Because no test can prove absence of Lyme borrelia infection in humans, animal models have been used to examine antibiotic efficacy. Most investigations have had methodological concerns, including suboptimal antibiotic dosing and introduction of infection in ways that did not model the inoculum size and route by which humans usually become infected (i.e., from the bite of a single Ixodes species tick).

Even so, antibiotic failures defined by the presence of cultivable spirochetes are rare and usually occur in the setting of immunodeficiency or inadequate antibiotic dosing. A recent study in mice employed two–photon intravital microscopy to examine the fate of B. burgdorferi after antibiotics. Treatment rapidly eliminated viable spirochetes but B. burgdorferi inflammatory products (antigens and DNA) could be detected for extended periods adjacent to cartilage and in certain tissues such as the entheses.

Viable spirochetes were not found, although xenodiagnosis performed by feeding uninfected ticks on the mice occasionally detected borrelia DNA. These results provide insight into the significance of borrelia DNA that can occasionally be detected in treated animals when spirochetes cannot be demonstrated by culture and in those instances in humans in which borrelia DNA may be detected after antibiotics for Lyme disease.

Four placebo-controlled trials of extended antibiotic therapy for PTLDS have been conducted. These showed either no durable benefit (n=3) or a benefit in fatigue only (n=1) with an unacceptable adverse event rate from parenteral therapy. Persistence of Lyme borrelia could not be demonstrated by culture or PCR. These trials form the basis of the recommendation to consider symptomatic treatment of PTLDS following guidelines for chronic fatigue syndrome or fibromyalgia.

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Re: Unraveling lyme disease.

Post by duncan » Sat 28 Jun 2014 23:01

"These trials form the basis of the recommendation to consider symptomatic treatment of PTLDS following guidelines for chronic fatigue syndrome or fibromyalgia."

Apparently, that's the goal of this group. If so, this is reprehensible, imo.

Remember, there is a hotly contested battle being waged behind the scenes in the CFS world. CFS advocates fear the hand-off to the IOM is nothing more than a covert move to reduce CFS to a pych subcategory. Notice the use of the phrase "sickness behavior"; this to me is a tell-tale sign that an effort is under way to align just about any variation of Lyme, other than acute Lyme, with MUS and therefore, possibly functional somatic disorders.

What kind of treatment do you think the "guidelines" referenced above - which are currently in flux - will stipulate or recommend? Do you imagine for one second they will include antibiotics or antivirals or even immune modulators??

They more than likely will consist of antidepressants and other psychogenic therapies that will include cognitive behavioral therapy, imo.

This is perhaps an opening salvo of a new front to redefine chronic Lyme and post-treatment Lyme syndrome as psychological disorders, imo.

I believe the press should be contacted and informed. I think the press should know how the definition of Lyme - and therefore, its sufferers - is being manipulated. I would hope different Lyme groups could come together and do so in a coordinated and deliberate fashion to expose this ploy for being anything but in the best interests of patients.

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Re: Unraveling lyme disease.

Post by velvetmagnetta » Sun 29 Jun 2014 12:04

I don't know if Lyme is a chronic active infection or not, but I do know intimately the symptoms of Post-Treatment Lyme Disease and yes, they are:
..such symptoms that last for more than 6 months after a documented episode of Lyme disease and are disabling...
...umm emphasis on the DISABLING...

And yet, I don't see any recommendations for the patients in question. What I do see is the systematic rationalization of stuffing PTLD into the poorly defined categories of CFS and FM:
These trials form the basis of the recommendation to consider symptomatic treatment of PTLDS following guidelines for chronic fatigue syndrome or fibromyalgia.
Well, which one shall we choose? Are the symptoms even similar???

And oh, and what guidelines they are! Let's see...a little GABApentin for your slight nerve pain (nothing serious, of course) and some antidepressants to help your problem with:
a form of cytokine-induced SICKNESS BEHAVIOR due to previously high levels of circulating cytokines.
Wow. Thanks a lot. You know, I might have even believed this one if I hadn't recently been stung by a wasp - and due to all the extreme and horrible pain I have been in from PTLD for years - I barely even felt it.

I also had a similar experience years ago when I burned my hand to blistering (my guitar fret hand) and was able to play an entire show without much notice of it at all.

What is going on here?

I stipulate that chronic pain sufferers have a higher threshold for pain than those who have not suffered pain chronically.

This "sickness behavior" business is not only completely and utterly insulting, but it is the OPPOSITE of the truth for people suffering from chronic pain. Studies have shown that babies who suffer chronic pain register higher pain thresholds later in life.

This is US, people. We have sat for years in so much pain that we may not be able to register if something else is wrong in our bodies later in life because we have already felt so much pain that anything else is just a twinge!

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Re: Unraveling lyme disease.

Post by duncan » Sun 29 Jun 2014 13:35

In the ME/CFS community, about 20 years ago, maybe more, some advocacy organizations started to emerge that were supposedly going to represent patients. They would voice patient concerns, represent patients' needs in terms of diagnoses and treatment. The most prominent organization was founded by a patient. It survived and in fact prospers even today.

But not as it was originally conceived.

Over time, the organization took on new executives, and that pioneering and very sick patient lost control, and he resigned. Those new executives? Well, the one who eventually took over came from within the CDC and had worked with the head of the CDC's CFS team - a team which, to some, seemed intent on redefining CFS as primarily a psychological disorder.

Today, that same advocacy still purports to speak for the CFS community, even though in a poll of CFS patients, if memory serves me, over 90% expressed a belief the advocacy did not actually represent them. So when the DHHS convenes a hearing on ME/CFS, or Congress or Social Security is briefed, this organization is called upon to speak to the difficult issues that define ME/CFS for the decision makers in the United States. And if you ask long-term ME/CFS patients, many will tell you the agenda being espoused is not theirs. They will say this organization does not represent them. That instead, it serves a different group of people.

So the ME/CFS patients gather and grouse at the forums, and they try to make a difference in the effort to let the world know really what their disease is like, that it's not just about fatigue, anymore than any major illness is about fatigue. That the name is a misdirect, a sleight of hand, and the people being conned are the sicks' fellow citizens.

Over time, they got some concessions and the government created CFSAC - the CFS Advisory Council - to supposedly help put conflicting ideas into perspectives. CFSAC made slow progress against strong biases, but it did make progress. In fact, it was recommending new definitions be brought to bear that could unite research and make it meaningful, but suddenly, the government unilaterally broke away, and handed off the efforts to "define" ME/CFS to the IOM. That would be the same IOM that many believed mangled the characterization of Gulf War Syndrome, and the cry of veterans against this effort is still ringing. That would be the IOM who would field a group of experts, the majority of whom hold no expertise in ME/CFS whatsoever.

Close to 50 real ME/CFS experts, researchers and clinicians, signed a letter of outrage against such a covert and inexplicable move, but to no avail. Today, the fear is palpable that the IOM will assign ME/CFS to the psychiatric dustbin, and more than 4000 research studies demonstrating biological underpinnings to the disease will rot.

So the individuals that matter most, the maverick researchers and pioneering physicians and hundreds of thousands of patients, are literally watching helplessly as the train wreck that is ME/CFS gathers steam, throttle down, with the government at the helm.

This is what I fear for the Lyme community. People like the ones who wrote this article, they can sound appealing to some because their story speaks to controlling health care costs, even while it downplays the severity of symptoms, and that is a popular story in today's government, and to the general population. It certainly is a nice story for insurance companies. ;)

Does it matter whether these Lyme story-tellers are getting it right or wrong? Did it matter for ME/CFS patients?

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Re: Unraveling lyme disease.

Post by Pandora » Sun 29 Jun 2014 18:35

You can throw out all the MICE studies unless they gave them all the infectious vaccines us humans got for decades. Using MICE (antibody responses) was never equal to HIS chronically infected with stealth.

NOT THEN and certainly not now when kids are getting over 70 more infectious vaccine antigens added to the mix they already have!!! And they KNEW that!

Biomolecules. 2014 May 8;4(2):510-26. doi: 10.3390/biom4020510.
Prion Fragment Peptides Are Digested with Membrane Type Matrix Metalloproteinases and Acquire Enzyme Resistance through Cu2+-Binding.
Kojima A1, Konishi M2, Akizawa T3.

Prions are the cause of neurodegenerative disease in humans and other mammals.



Coexistence of ribbon and helical fibrils originating from hIAPP20–29 revealed by quantitative nanomechanical atomic force microscopy

Uncontrolled misfolding of proteins leading to the formation of amyloid deposits

is associated with more than 40 types of diseases,

such as neurodegenerative diseases and type-2 diabetes.
http://www.lymeneteurope.org/forum/view ... 7&start=20

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Re: Unraveling lyme disease.

Post by duncan » Sun 29 Jun 2014 22:15

Of course, some of these boobs can't even come at the "sickness behavior" or functional somatic disorder from the correct perspective. Subscribers to this psychobabble charade claim patients actually feel severe pain and cognitive dysfunction etc, it's just not based on any physical cause. That's not what these hillfolk seem to be saying.

What some of these old-school Lyme "experts" appear to me to be claiming is that the impact of chronic Lyme , or rather PTLDS, actually exists, it's just that the degree of the impact is not all that severe. Patients with PTLDS, it would seem, are not in terrible pain that migrates, for instance; they are just experiencing aches, and the aches are the aches and pain of everyday life. Nothing more.

For me, that perhaps is even more unconscionable since they seem to be misrepresenting the patient base they are supposedly studying, and supposedly meant to serve. So when I am telling them I cannot squat for the severe pain that erupts in my knees, or toss a ball at times for the pain that grips my shoulder like a vice, they appear to me to be re-interpreting and reporting that excrutiating pain, that agony, as an "ache".

As I said: unconscionable.

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