First prize in the Neuro Lyme Denial Category goes to.....

Topics with information and discussion about published studies related to Lyme disease and other tick-borne diseases.
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dlf
Posts: 294
Joined: Sun 7 Apr 2013 15:36

First prize in the Neuro Lyme Denial Category goes to.....

Post by dlf » Mon 18 Jan 2016 7:05

Yes folks, I think this one takes the prize. Caution - you are now entering a realm where the Orwellian nightmare of 1984 has been given a new lease on life. Up is down, black is white, right is left and double-speak and double-think are the standard way of life.

http://www.ncbi.nlm.nih.gov/pubmed/26768265
Wien Klin Wochenschr. 2016 Jan 14. [Epub ahead of print]
Management approaches for suspected and established Lyme disease used at the Lyme disease diagnostic center.
Wormser GP1, McKenna D2, Nowakowski J3.

Abstract
2015 marks the 27th year that the Lyme Disease Diagnostic Center, located in New York State in the United States, has provided care for patients with suspected or established deer tick-transmitted infections. There are five deer tick-transmitted infectious in this geographic area of which Lyme disease is the most common.For patients with erythema migrans, we do not obtain any laboratory testing. However, if the patient is febrile at the time of the visit or reports rigors and high-grade fevers, we consider the possibility of a co-infection and order pertinent laboratory tests.Our preferred management for Lyme disease-related facial palsy and/or radiculopathy is a 2-week course of doxycycline. Patients who are hospitalized for Lyme meningitis are usually treated at least initially with ceftriaxone. We have not seen convincing cases of encephalitis or myelitis solely due to Borrelia burgdorferi infection in the absence of laboratory evidence of concomitant deer tick virus infection (Powassan virus). We have also never seen Lyme encephalopathy or a diffuse axonal peripheral neuropathy and suggest that these entities are either very rare or nonexistent.We have found that Lyme disease rarely presents with fever without other objective clinical manifestations. Prior cases attributed to Lyme disease may have overlooked an asymptomatic erythema migrans skin lesion or the diagnosis may have been based on nonspecific IgM seroreactivity. More research is needed on the appropriate management and significance of IgG seropositivity in asymptomatic patients who have no history of Lyme disease.
Clearly there are not a whole lot of details in the abstract. Got encephalitis or myelitis from a tick bite, it's obviously not Lyme, folks, it's gotta be Powassan. I must admit though, the last two sentences in this have me scratching my head. I am really puzzled as to why an 'asymptomatic' patient with IgG seropositivity would need 'appropriate management' and what research for this might entail. And, what the heck is an 'asymptomatic' erythema migrans skin rash and why would someone attribute a prior case of Lyme to something that had been overlooked?

There are a few more excerpts courtesy of Rel-risk, (thank you, RR!) along with his usual biases which can be found just below: (In the spirit of 1984 - Everyone by now must know he has some kind of issue regarding poor, young, Afro-American men, right?)

http://rel-risk.blogspot.ca/2016/01/abs ... in-ld.html
Sunday, January 17, 2016
Absent Entities in LD
Notes from:
Wormser GP, McKenna D, Nowakowski J. Management approaches for suspected and established Lyme disease used at the Lyme disease diagnostic center. Wien Klin Wochenschr. 2016 Jan 14.

2015 marks the 27th year that the Lyme Disease Diagnostic Center has provided care for patients with suspectedor established deer tick-transmitted infections. Located in the Lower Hudson Valley of New York State, this Center is run by an infectious diseases specialist and has served as a walk-in diagnostic, treatment and research facility for adults at least 18 years of age with tick bites or a clinical illness suspected to be transmitted by deer ticks.

We have seen various other manifestations of neurologic Lyme disease including other cranial nerve palsies and brachial plexopathy. However, we have not seen convincing cases of encephalitis or myelitis solely due to B. burgdorferi infection in the absence of laboratory evidence of concomitant deer tick virus infection (Powassan virus). It is possible that such cases do occur rarely, especially in Europe where they are likely associated with another species of Lyme Borrelia, namely B. garinii. While some patients with erythema migrans may complain of memory or concentration difficulties and these symptoms can persist for months to years in a small number of patients as a manifestation of post-treatment Lyme disease symptoms, we have never seen the poorly defined entity referred to as Lyme encephalopathy and question its existence. We also question the existence of a diffuse axonal peripheral neuropathy as a manifestation of Lyme disease, having never seen a bona fide case. Well-documented cases of a diffuse peripheral neuropathy also do not exist in Europe, to our knowledge, except in patients who manifest the late cutaneous manifestation of Lyme disease known as acrodermatitis chronica atrophicans; moreover, the peripheral neuropathy that occurs in patients with acrodermatitis chronica atrophicans is most often not diffuse but instead localized to the extremity manifesting the skin lesion.

Reasons why there could have been misdiagnoses leading to the perception of Lyme encephalopathy, or diffuse peripheral neuropathy, and/or other unusual manifestations of Lyme disease, is the relatively high frequency of positive Lyme disease serologic tests in certain populations, either due to false-positive test reactivity (especially with earlier testing methods), a prior diagnosed, treated, and resolved case of Lyme disease, an asymptomatic latent infection or a spontaneously resolved infection. Whenever a positive test is found the clinician is faced with the critical question of whether the results are related or unrelated to the patient’s clinical picture. An alternative explanation is that encephalomyelitis, Lyme encephalopathy and diffuse peripheral neuropathy are extremely rare, or are caused by Lyme Borrelia strains not found in our geographic area.


Disturbing news to the many online Lyme activists: some of their symptoms have nothing to do with Lyme disease. Still, that hasn’t stopped one well-known activist from reading the abstract to the above paper and declaring:

“THIS is one of the reasons we have over 25 THOUSAND members here. They weren't cured using the 2 weeks of doxy theory! They are trying to kill us all!”

Yes, it’s a fiendish conspiracy to reduce the population of white, middle-aged women with nonspecific, subjective complaints of pain, discomfort and depression. Of course, this same nut insisted in 2011 that she was infected with 13 different bacteria, viruses, and parasites. Not even the mangiest mutt in India or Egypt or South Africa would be so burdened. But then it’s hard to tell crazy people that they’re crazy.
:o Oh, good grief.......Here is a much earlier paper (from 1997) that begs to differ. It's pretty amazing that they reported such good results treating something that just doesn't exist. (Yup, I am just trying to get into 1984 spirit here, folks) Anyone want to be a fly on the wall when the two panel members for the 2015 Lyme guidelines (Wormser and Steere) hash this argument out?

http://jid.oxfordjournals.org/content/180/2/377.full
Successful Treatment of Lyme Encephalopathy with Intravenous Ceftriaxone
Eric L. Logigian1,4,a, Richard F. Kaplan1,2,a and Allen C. Steere2,3

Abstract

The efficacy of intravenous ceftriaxone, 2 g per day for 30 days, was evaluated in a case series of 18 consecutive patients who met strict criteria for Lyme encephalopathy. Months to years after classic manifestations of Lyme disease, the 18 patients presented with memory difficulty, minor depression, somnolence, or headache. Sixteen (89%) had abnormal memory scores; 16 (89%) had cerebrospinal fluid (CSF) abnormalities, and all 7 patients tested had frontotemporal perfusion defects on single photon emission computed tomographic (SPECT) imaging. Six months after treatment, memory scores in the 15 patients who completed the study according to protocol were significantly improved (P < .01). In the 10 patients who had follow-up CSF analyses, total protein levels were significantly lower (P < .05). In the 7 patients who had SPECT imaging, posttreatment perfusion was significantly better (P < .01). Twelve to 24 months after treatment, all 18 patients rated themselves as back to normal or improved. We conclude that Lyme encephalopathy can be treated successfully with ceftriaxone.

duncan
Posts: 1370
Joined: Wed 5 Sep 2012 18:48

Re: First prize in the Neuro Lyme Denial Category goes to.....

Post by duncan » Mon 18 Jan 2016 11:17

Extraordinary.

It's like a group of individuals hosting an annual race for 30 years to see who is the fastest man alive. Only they've contrived a seemingly elaborate rule for entry into the race that somehow manages to prevent anyone from entering that is over 5'5" feet tall, and under 250 lbs.

So, year after year, the winner of the race is relatively short and heavy. They promote these results as proof that tall thin men cannot run fast.

Talk about crazy. Sigh.

Look, I think people are getting hosed. I think I am one of them.

I am usually 2T positive (around 15 out of 20 times).
I am always C6 positive.
I have cognitive deficits as demonstrated by professional cognitive testing.
Three out of four brain MRI's performed in the last two years show clear abnormalities.
A lumbar puncture shows I have elevated proteins in my CSF.
The same lumbar puncture shows evidence of intrathecal Bb antibody production.
I have peripheral neuropathy.
I have polyradiculopathy.
I have significant bilateral damage to my 8th cranial nerve (right next the the 7th which is responsible for facial palsy).

And yet I have a strong supporter of a school of thought similar to that evidenced by the above authors, saying I don't have enough data to support a diagnosis for Lyme encephalopathy.

I am getting weary of this rabbit hole. I think a lot of people are.

nnecker
Posts: 215
Joined: Wed 19 Dec 2012 22:57

Re: First prize in the Neuro Lyme Denial Category goes to.....

Post by nnecker » Mon 18 Jan 2016 11:51

Tincup said:

Bea is right. Good memory Bea! After years of having Lyme and going through that run-around ...

And then not being able to get the IDiot doctors to DO THEIR JOB (again) and order more tests when I was exposed on a regular basis to ticks and I remained horribly sick...

I eventually had to get a chiropractor to order the blood work from Labcorp to see if I could find some answers.

Thankfully he actually LISTENED to me and could see I was so so sick, so he had no problem ordering the lab tests. Bless his heart.

Once I had the positive results in hand (after 15 years of suffering) I thought that would help get me needed medical treatment, but no, the IDiots again wouldn't listen. Hard-headed toads.

Maybe because they didn't want to be sued for letting me get that bad, especially after I'd begged them to run those blood tests and they wouldn't?

Anyhow...

The IDiots said back then it was "impossible" to have more than one tick borne disease at a time and I couldn't still have Lyme after being given 7 days of tetracycline, nor could I have gotten it again because I was now "immune" to getting it.

Guess again IDiots. Surprise, surprise, ALL tests were positive.

So then a physician ordered the same tests from another lab, and again all were positive.

I've actually had all of the listed infections (below) tested by at least three different labs (minimum) and all results on all tests were positive.

Must be a special gift I have. HA!

Some infections were actually tested by 4 or 5 different labs to be sure- and again, all positive.

Western Blots, PCR, IFA, ELISA- you name it, I've had it.

My biggest hope now is they don't discover any more diseases because so far my luck isn't running too good.

[lol]

Positive Tests

Lyme
RMSF
Babesia microti
Babesia duncani
Anaplasmosis
Ehrlichiosis HGE
Ehrlichiosis HME
Bartonella henselae
Bartonella quintana
Bartonella elizabethae
Histoplasmosis
Parvo B-19
Epstein Barr Virus
Duncan said:

I suffered from my first overt symptoms. I had peripheral neuropathy in my hands and feet. I suffered from intermittent attacks of vertigo and dizziness.

A wellspring of symptoms sprung up. The vertigo and the peripheral neuropathy both accelerated and worsened, and now I began to notice cognitive difficulties. As I grew sicker, I found my ability to write - which I did for a living - diminish. This came and went in intensity. I had trouble with memory. With reasoning and judgement. With response times. With creativity, too.

With these symptoms came unpleasant arthralgias and unrelenting degrees of fatigue.
LCHTom said:

I have a good example in my own experience. I saw one of the top IDSA Physicians in my area who also has strong beliefs regarding Lyme. After hearing my story including very strong Lymph node biopsy results indicating an infectious or autoimmune process, this IDSA Physician ran 8 tests of which 4 I had been tested for before. I asked if he would be ok with testing for Brucella and his response was, "there has never been a case in the United States". So I emailed him a copy of a Georgia study and the California Department of Health (CDPH) that indicated a few hundred cases had been reported in the 2009-2012 period with about 100 in CA.
Reminds me of this guy:

https://www.youtube.com/watch?v=JXlXN84NiEI

duncan
Posts: 1370
Joined: Wed 5 Sep 2012 18:48

Re: First prize in the Neuro Lyme Denial Category goes to.....

Post by duncan » Mon 18 Jan 2016 12:19

nnecker, perhaps you aren't quite clear on what objective test results mean... :D

I suggest you stay away from oncology forums.

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LHCTom
Posts: 341
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Re: First prize in the Neuro Lyme Denial Category goes to.....

Post by LHCTom » Wed 20 Jan 2016 22:52

When I searched online, I found a NNecker... Pretty cool! It loves boating and wrestling. I wonder what that back of his fingers look like after being drug along the ground? I guess it makes sense that something like this would have no compassion and full of hatred. Very sad. A Donald supporter I assume!
NNecker.jpg
NNecker.jpg (8.65 KiB) Viewed 2001 times
The greater the ignorance, the greater the dogmatism.

Attributed to William Osler, 1902


User avatar
LHCTom
Posts: 341
Joined: Mon 22 Oct 2012 4:18

Re: First prize in the Neuro Lyme Denial Category goes to.....

Post by LHCTom » Fri 22 Jan 2016 17:52

Love that NNecker :D :bonk:
The greater the ignorance, the greater the dogmatism.

Attributed to William Osler, 1902

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