Monthly Archives: October 2015

The “Polite Fiction” Of NIH Scientists and The Drug Companies….

The Other Side Of The Stretcher

PoliteFiction7

In order to advocate properly, one must study and show evidence of the history of the government institutions who are supposed to be protecting the public health so advocacy people know exactly what they are dealing with.  I’ve been doing that by getting books that were written during the height of the AIDS epidemic and showing them to fellow advocacy people as well as friends.

I was an active RN during the height of the AIDS epidemic. I saw just how much those gov’t institutions protected the public health-> NADA.  What I saw was an assembly line of death that came in through the hospital doors and left via the morgue.

I must also mention this as well, many hospital workers, doctors, nurses, etc… were becoming ill with co-morbid infections of AIDS patients such as Mycoplasma, never recovered, became disabled and unable to work.  Thus, the health care workers were…

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Of Truths and Lymes

The Internet is a terrible, scary place, full of truths, partial truths, misinformation, and flat-out lies–all indistinguishable from each other on their face. And speaking of face–we’ve got good old Facebook mucking it up, 24 hours a day, 8 days a week. I’d bet money that 99% of what you see on Facebook is false. What’s a poor Lymie to do? How does one know where to get credible information about a disease that is the subject of the biggest medical fraud in the history of the world?

In the land of Facebook, many turn to “groups.” There are groups that discuss treatment, groups for emotional support, groups for cousins of dogs whose hamster met a guy who got Lyme from a magical dragonfly. Frankly, these groups probably do more harm than good.
Granted, I probably wouldn’t be where I am today, blogging about the science and the Cryme, if…

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“GET” And The House Of Commons Gym Part 4

The Other Side Of The Stretcher


Graded Exercise Therapy and The House Of Commons Gym

Part 4

In Memory Of M.E. Patient

Brynmor John

18 April 1934 – 13 December 1988

BrynmorJohnMemorial

BrynmorJohn1959_1
Brynmor John Circa 1959

Compliments of Flying Officer Pam Gerrity

From The Nurse Point of View! 

I will point out again like I said in my previous blog posts, i’m coming from an R.N. point of view for the benefit of the patients because I was an active R.N. until I was no longer able to work because of M.E.

I actually couldn’t respond from a patient point of view because I would lose focus on the subject, and I would end up sounding more like an angry patient than a nurse who is very disappointed because of the lack of the standard of patient care in regards to this illness.

 

Review Of The Facts!

According to Malcolm Hooper’s “Magical Medicine: How To…

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The PACE Trial: David Tuller investigates

valerieeliotsmith

Those of you who read this blog regularly will know that I have lived with the illness Myalgic Encephalomyelitis (ME) for nearly 35 years. The condition is also (and misleadingly) known as “Chronic Fatigue Syndrome” and is therefore often referred to as “ME/CFS” or “CFS/ME”.

I have previously written about the controversial PACE Trial (Principal Investigator: Professor Peter White of St Bartholomew’s Hospital in London) and its highly questionable effects on the treatment of patients – see PACE vs FOIA: Access Denied. American journalist and academic, David Tuller, has now produced an in-depth article which deconstructs the Trial and re-evaluates its efficacy. I have been in contact with David during the last eighteen months and I have given him some assistance with the production of this article.

The article is published on Virology Blog which is hosted by Professor Vincent Racaniello of Columbia University in New York City…

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“GET” and The House Of Commons Gym Part 3

The Other Side Of The Stretcher

   Graded Exercise Therapy and The House Of Commons Gym

Part 3

In Memory Of M.E. Patient

Brynmor John

18 April 1934 – 13 December 1988

BrynmorJohnMemorial

 

BrynmorJohn1959_1
Brynmor John Circa 1959

Compliments of Flying Officer Pam Gerrity

From The Nurse Point of View

I will point out again like I have before, remember, I’m coming from an R.N. point of view for the benefit of the patients because I was an active R.N. until I was no longer able to work because of M.E.

I actually couldn’t respond from a patient point of view because I would lose focus on the subject, and I would end up sounding more like an angry patient than a nurse who is very disappointed because of the lack of the standard of patient care in regards to this illness.

How Do the Readers Know that The Nurse Point of View For This Particular Blog Post They Are Reading…

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“GET” and The House Of Commons Gym Part 2

The Other Side Of The Stretcher

Graded Exercise Therapy and The House Of Commons Gym

Part 2

In Memory Of ME Patient

Brynmor John

18 April 1934 – 13 December 1988

BrynmorJohnMemorial

 ]

BrynmorJohn1959_1
Brynmor John Circa 1959

Compliments of Flying Officer Pam Gerrity

What Really Happened To Brynmor John?

First we have to look at the situation!

According to Malcolm Hooper’s “Magical Medicine:”

On 13th December 1988 Brynmor John MP died from ME/CFS.
His experience of the illness was all too familiar:

‘Though there is only a slight gradient from our house to the main road, it could have been the North face of the Eiger. I just could not get up it’ -Brynmor John

He found himself unable to dress; the slightest exertion exhausted him and it took days to regain his strength.

He was irritated by the profusion of psychiatric comment and was trying to ensure better understanding of ME/CFS.

Brynmor John suddenly…

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Steere, 1991, Rheumatology News “Lyme Causes Everything”

From Kathleen Dickson:

lyme/UwAp8BhxwAU/R9-e2JQGN1AJ
Rheumatology News, April 1991 Guest Commentary 
Rheumatology Research in the 90s By Allen C. Steere

Syphilis now has a competitor for the title 
of most complex infection. Because of the neurologic 
abnormalities it produces, Lyme disease is reminiscent 
of neurosyphilis.

***Once present, the neurologic symptoms follow 
a slowly progressive course, in some instances for 
10 years or longer.***
Most of these patients have subtle encephalopathy 
affecting the central nervous system.  
They have memory difficulty, depression, 
or sleep distruancesbut no seizures, myoclonus, 
or changes in the level of consciousness. 
They also have sensory symptoms, such as pain 
in the spine, accompanied by radicular pain 
in the limbs or trunk, and some havedistal 
parethesias with intermittant tingling sensations 
in the hands and feet.These symptoms are perilously 
close to those that occur in fibromyalgia, 
with the chronic fatigue syndrome, or instress-induced 
syndromes-conditions that are ever so much 
more common than tertiary Lyme disease.
How then does one identify the patient with chronic 
neurologic abnormalities of Lyme disease?


The patients in question have characteristic 
findings on laboratory evaluations as follows:
almost all were sero-positive by ELISA, 
half of them had increased cerebrospinal 
fluid (CSF) protein,half had evidence of 
slight amounts of production of intrathecalantibody 
to the spirochete, and 70% had one or more 
of both abnormalities.  

In addition, more than 50% had abnormal 
EMGs indicating polyneuropathy affecting 
both proximal and distal nerve segments, 
and MRI brain scans showing areas of increased 
T2 signal intensity. 

In other words, many of our patients had 
memory impairments on their psychological 
assessments, had abnormal CSF anaysis, 
frequently accompanies by EMG evidence of 
an axonal neuropathy. 
number of them also had intermittant 
attacks of arthritis.  
Combined with the evidence of immunity 
to Borrelia burgdorferi, this is the clinical 
picture that is most suggestive of Lyme disease.
There is some provocative information 
that now suggests that Borrelia burgdorferi 
infection may cause a multiple sclerosis 
like picture [sic].


Dr Rudolf Ackermann in Cologne, Germany  
has described 44 such patients.  


So far we have seen only one: 6 years after 
disease onset, the patient experienced progressive 
stiffness and weakness in the muscles of his 
right arm and in both legs; tendon jerks were 
diffusely brisk, with bilateral ankle clonus 
and Babinski sign; 
and there  were occasional episodes of i
ncontinence. 


MRI of the brain revealed numerous small areas 
of increased T2 signal intensity in the 
periventricular region on the right side.  
This scan is compatible with the diagnosis 
of multiple sclerosis; however, in the 
case of this patient, brain stem and 
auditory-evoked potentials were normal, 
and he did not have myelin basic protein in CSF.  




What *did*suggest Lyme disease was the fact that he 
had a serum IgG antibody response to B burgdorferi of 
1 to 12,800 and he had evidence of intrathecal antibody 
production to the spirochete. 

I want to emphasize that it is not yet 
proved that B burgdorferi causes this syndrome.  


The patient could have two diseases- 
Lyme disease and multiple sclerosis. 


What we lack is the discovery of the 
spirochete from the brain lesions or 
the CSF,  or perhaps proof of its presence 
by polymerase chain reaction (PCR) 
amplification of borrelial gene segments- 
a technique that is not quite perfected 
for use in Lyme disease.




***If B. burgdorferi does cause this syndrome, 
it's absolutely amazing that this spirochete 
would mimic not only rheumatoid arthritis (RA) 
but also multiple sclerosis (MS), two of the most 
puzzling and devastating autoimmune diseases.

*****
Now I would like to proceed to the issue of seronegative 
Lymedisease.  I am convinced this entity exists.*** 




We have evaluated approximately 200 
patients with late Lyme disease in the 
past 2 years, and we found that nine, or 5%, 
were seronegative by ELISA.  This finding 
coincides with the figure from Ray Dattwyler, MD, 
at Stony Brook (SUNY), who first described 
seronegative Lyme disease.  He stressed that 
this outcome is more likely to occur in 
patients who receive antibiotic therapy 
during the first several weeks of infection.


Indeed, six of our nine patients (67%) 
did receive antibiotic therapy during the 
first month of illness, a significantly 
higher percentage than in our sero-positive 
patients with late Lyme disease.
***I must emphasize the subtlety of the clinical 
picture in these sero-negative patients. 




Two had erythema migrans followed months 
later by very mild episodes of arthritis 
lasting only days.  
Three of the patients had a subtle 
encephalopathy/polyneuropathy picture, 
resulting in some memory disturbance 
accompanies by slight numbness and 
tingling the extremities.  


They also have CSF and EMG abnormalities. 




**Two of the patients with neck pain had EMGs 
that revealed cervical radiculopathy.**  




The two final patients had a more generalized 
pain syndrome with tender points on examination- 
the clinical picture of fibromyalgia.  
Three of the patients (one with arthritis 
and two with neurologic abnormalities) 
had only a cellular immune response to 
the spirochete.***