Monday, 31 January 2011


Canadian Lyme Disease Foundation:

Feds Say "No" to Access to Information Request on Serious Health Matter; National Security Cited

VANCOUVER, BRITISH COLUMBIA--(Marketwire - Jan. 20, 2008)

- The federal government denies Access to Information request. They say it is a matter of "national security", so Canadians have no right to records that measure the ability of our national medical laboratory to detect the fastest growing animal to human disease in the northern hemisphere

The Canadian Lyme Disease Foundation decided they must find out how well our federal medical laboratory in Winnipeg does at detecting Lyme disease in humans.

Fully certified, proficiency tested and accredited laboratories in the U.S. have been finding that several thousand Canadians are actually positive for Lyme disease after a negative Canadian test. Many of these Canadians had been given diagnoses ranging from multiple sclerosis, mental illness, to chronic fatigue syndrome.

The successful outcome of Lyme disease treatment demands early diagnosis, so the Canadian Lyme Disease Foundation sought to find out why Canadian lab tests in so many instances are negative followed by a positive U.S. test. These patients only then get the treatment they need. The proof is in the pudding, they do remarkably well in recovery after having been left sick for years in many instances.

Proficiency testing of laboratories measuring their ability to detect specific disease is required in most jurisdictions for laboratories to retain certification. The U.S. labs are proficiency tested and have excellent results. We expect similar results from our federal labs but we will never know if a small group of people who hold the lives of Canadians in their hands has their way.

If denying our request because of "national security" sounds absurd to you, it did to us as well. Something is going on. One provincial access to information request revealed minutes of a meeting involving provincial medical authorities and our federal laboratory representatives who discuss hundreds of unique cases of Lyme disease in only a three year period in that province. Officially, in that same three year period the reported number of cases was zero.

read more here

Those following developments with ME/CFS in the UK and the MRC with their secret files will not be at all surprised to read the above.

Saturday, 29 January 2011


Good news to hear that Dr Mayne is diagnosing and treating patients with Lyme Disease in Australia but also good to see he is trying to raise awareness of the presence of Lyme Disease in Australia.

Dr Mayne is building a very interesting website here

From his website here

The CD57 Test

Critical update 2nd December 2010

We now know we are specifically interested in
CD3- CD57+ NK cells
Please note there are also CD57+ T cells but these are helper cells
Normal CD57 NK cell count is >180

>120 as treatment ends has a good prognosis

20-60 chronic Lyme disease


This data is quoted from the following presentation

CD-57 COUNT (Natural Killer Cells)
• Low counts seen in Chronic Lyme when the infection has been active > 1 year
• Reflects degree of infection
• Predicts a relapse if low when antibiotics end
• Must use method of LabCorp (normal is >180)
– <20->
– 20-60- most common result in chronic patients
– >60- Lyme activity minimal
– >120- Relapse NOT likely after treatment ends


From the ILADS conference 2010 thanks to Scott Forsgren Better Health Blog

Dr. Joe Burrascano shared CD57 suppression may occur in XMRV as well as in Borrelia.

Reposted by Dr Speedy The Niceguidelines blog

The NK cells (NK or Natural Killer Cells). They maintain baseline function unaltered, ie perform their function of cell destruction. Nonetheless there are two abnormalities in patients with CFS / ME: A degree of activation slightly above normal and A marked reduction of CD57 in the 11 patients analyzed, so that could be used as a marker to validate these patients, according to Dr. Blanco.

Interesting to read Dr Cheney's comments on XMRV and Lyme Disease here

Wednesday, 26 January 2011


The following was written by an M.D. who contracted CFS.

Skeptical of Skeptics
by Thomas L. English, M.D. appeared in the Journal of the American Medical Association February 27, 1991


'I have talked with scores of fellow patients who went to our profession for help, but who came away humiliated, angry, and afraid. Their bodies told them they were physically ill, but the psycho speculation of their physicians was only frightening and infuriating -- not reassuring.

It told them their doctors had little understanding of the real problem.

Many patients had depleted themselves financially, dragging in vain through expensive series of tests and consultants as their lives crumbled around them.

They had lost careers, homes, families, in addition to the loss of stamina and cognitive skills.

There is nothing that you hold dear that this illness cannot take from you. Nothing.

Are we to believe that just because symptoms are strange and unfamiliar they cannot be real?

Are we to assume that our laboratory tests are capable of screening for new diseases as well as old?

Distrust of new ideas is as old as humankind; so are the harmful consequences of that distrust.

The doctrines of Lister and Semmelweis were not generally accepted for more than 50 years.

I shudder to think of the death and misery caused by the skeptics during that half-century.'

Yes this was written twenty years ago and what has changed?

Also it is twenty years ago since Joe Burrascano said in his infamous Senate testimony that-

a core group of university-based Lyme disease researchers and physicians "act unscientifically and unethically," adhering to outdated views and attempting to discredit differing opinions. "They behave this way for reasons of personal or professional gain, and are involved in obvious conflicts of interest."

See his video presentation part two

Burrascano is not alone in his views.

About four years ago, Richard Blumenthal, the attorney general for Connecticut, launched an antitrust investigation into the guidelines used by the Infectious Diseases Society of America for the treatment of Lyme disease.

The guidelines were adopted in 2006. According to Blumenthal's office, the investigation found, among other things:

The society failed to review panelists who created the guidelines for conflicts of interest. (Some of the panelists were later found to have conflicts.)

The panels in 2000 and 2006 refused to accept information regarding the existence of chronic Lyme disease.

The society blocked panel appointment of scientists and physicians with divergent views on chronic Lyme.

Blumenthal's investigation resulted in the society agreeing to reassess its treatment guidelines.”

The more one delves into available research on ME/CFS and Lyme Disease the more one realises that our Health Authorities are deliberately turning a blind eye to the patients plight and denying the science that is available thus holding up further investigations into these illnesses.

Tuskegee x 10000 as Ken Leigner so aptly put it in his letter to the Institute of Medicine

We want recognition now not in another twenty years, support research centres such as these and we will do it without our Health Authorities permission.

Whittemore Peterson Institute
here who are working on ME/CFS and associations with XMRV retrovirus.


Tyme for Lyme who work with Columbia University on Tick borne illnesses and Lyme Disease

Tuesday, 25 January 2011


'Therefore using only ELISA as a screening test or for diagnosing Lyme borreliosis seems debatable.'

Well that is an understatement, but a step in the right direction, if only our Health Authorities would listen.

Arch Immunol Ther Exp (Warsz). 2011 Jan 22. [Epub ahead of print]

Serodiagnosis of Borreliosis: Indirect Immunofluorescence Assay, Enzyme-Linked Immunosorbent Assay and Immunoblotting.

Wojciechowska-Koszko I, Mączyńska I, Szych Z, Giedrys-Kalemba S.
Department of Microbiology and Immunology, Pomeranian Medical University, Powstańców Wielkopolskich 72, 70-111, Szczecin, Poland,
Lyme disease is an infectious, multi-system, tick-borne disease caused by genospecies of Borrelia burgdorferi bacteria sensu lato, characterized by remarkable heterogeneity. In this situation choosing an optimal antigen array for diagnostic tests seems problematic. The serological tests for borrelia routinely done in laboratories often produce ambiguous results, which makes a proper diagnosis rather complicated and thus delays the implementation of an appropriate treatment regimen. Thirty-seven outpatients and eight inpatients with suspected borreliosis diagnosis hospitalized at the Clinics of the Pomeranian Medical University (Szczecin, Poland), participated in the study. In order to detect the antibodies against Borrelia sensu lato three kinds of serological tests were used: indirect immunofluorescence assay (IIFA), enzyme-linked immunosorbent assay (ELISA), and immunoblot. The IIFA and immunoblot tests conducted on 45 patients (100%) produced positive results for both the IgM and IgG antibody types. In the case of ELISA, positive or borderline results were observed in only 24 patients (53.3%). The immunoblot test for IgM most frequently detected antibodies against the outer surface protein C (OspC) antigen (p25), and, in the case of IgG, against the recombinant variable surface antigen (VlsE). The IIFA screening test used for diagnosing Lyme borreliosis produced the highest percentage of positive results, which were then confirmed by immunoblot, but not by ELISA. Therefore using only ELISA as a screening test or for diagnosing Lyme borreliosis seems debatable.
PMID: 21258869 [PubMed - as supplied by publisher]

In fact there has been a considerable body of research over many years showing the problems over testing for Lyme Disease and not just the Elisa but also the Western Blot.

See Steven Phillips presentation to the IDSA review panel 25 studies on seronegativity and persistent infection. here

Interestingly Steven Phillips highlights on 18 occasions were the authors of the discredited IDSA Lyme Disease guidelines were involved in those studies but failed to include in their guidelines. When asked why by the Chairwoman at the end on the hearing Steere replies that he has changed his opinion. Yes OPINION is what is driving the IDSA guidelines for Lyme disease.

The recent Institute of Medicine workshop on the state of the science for Lyme Disease and other Tick borne diseases leaves the listener in no doubt that testing is just not reliable in any of these illnesses and that for some long courses of treatment are needed to deal with some chronic tick borne diseases.

The Video casts are still available to watch here

One of the most significant presentations was that of Ben Luft who recently Sequenced the Genome for Borrelia here he points out the difficulties over testing because of the various different strains of Borrelia but he also emphasises that it is a relapsing illness. You can read a phonetic translation of his presentation here

How many thousands of patients have had negative test results for Lyme Disease and been told by their doctors they don't have Lyme Disease, when in reality they do but the poor testing has missed the result.

Interestingly Doctors are not warned about the possible seronegative results even though here in the UK the makers of those test kits Trinity Biotech say-

'Negative results (either first or second-tier) should not be used to exclude Lyme disease.'

How many patients with Fibromyalgia, ME/CFS, Arthrits, Muscle weakness, Polymyalgia Rheumatica, Neurological illnesses like Multiple Sclerosis, Motor Neurons, Parkinson's and many more health problems are properly assessed for Lyme Disease or other tick borne diseases?

Monday, 24 January 2011


Dr Cheney wrote in 1993 at a Testimony before the FDA scientific Advisory committee about Chronic Fatigue Syndrome -

'The worst cases have both an MS- like and AIDS- like clinical appearance.'

'From an economic stand point this disease is a disaster 80% of patients at my clinic are unable to work or attend school. The average length of illness at the time of presentation is 3.8 years. 90% of cases have become ill since 1980. The yearly case production if plotted is ex potential.'

'Most patients have seen more than ten physicians.'

'In summary CFS is an emerging poorly understood disorder with a distinctive clinical presentation.'

'This disorder is a socio-economic as well as a medical catastrophe that will not end. I believe that government and university clinicians have spent too little time or thought too narrowly about these patients. This disease is too complex to rely wholly on standard medical orthodoxy to explain it. When in doubt listen to a thousand patients with an open mind. Failing that then listen to those who have spent countless hours with a thousand patients. Most of us have some wisdom to impart and most of that came from patients'


So what have our governments done since- Nader.

Even now when the Whittemore Peterson Institute desperately need funding to further the work they are doing with XMRV research, so far all funding requests have been declined.

So was anything learnt in the last 20 years?

Well yes by those dedicated doctors who are working to get to grips with this dreadful disease but sadly not by our Health Authorities who still have their heads well and truly buried in the sand.

Seems Dr Cheney's description of an AIDS like clinical appearance was very near the mark, if XMRV is eventually proven to be associated with ME/CFS illness.

Sadly Chronic Lyme disease is not the only illness denied by our Health Authorities.

Friday, 21 January 2011


Thanks to Andrea Pring for raising awareness of the struggle for patients with ME/CFS and the desire for the true science to come to light in order to help the patients.

My own history of different diagnosis fibromyalgia, ME/CFS, Arthritis, Muscle weakness, Musculoskeletal Disease, Polymyalgia Rheumatica, as my symptoms deteriorated over 4 years is documented in the right hand column of my blog. Eventually a chance course of antibiotics significantly improved my symptoms and led my GP to suspect Lyme disease.

After many many months of antibiotics I am nearly 100% improved.

What has appalled me the most is the way these diseases and others are marginalised by our medical bodies, when they have been aware for more than 30 years much of the extent of the damage and causes that the illnesses do, but choose to ignore and allow patients to be blamed for their poor health.

How many of the illnesses such as Autism, Alzheimer's, Multiple Sclerosis, Parkinson's, Rheumatoid Arthritis, etc will be found to be as a result of pathogens possibly unknown but some no doubt already known but ignored.

Currently treatments are palliative, if any at all, or suppression of what is assumed, not known, to be an auto immune dysfunction.

I will not post any more of my own thoughts or opinions here on this post but anyone interested can scroll back through this blog at the many posts with links to fascinating research, that if nothing else exposes so many attitudes in medicine for what they are attitudes and opinions but not always based on sound evidence and certainly not the Evidence based Guidelines the general public has so much faith in.

We haven't heard the last of XMRV-ME/CFS-LYME DISEASE

Thursday, 20 January 2011


So much has been happening I am not sure what to blog about and what to leave out so I will list a few things.

Lannie in the Lyme light reporting back on
PART 1: 1/17/11 XMRV presentation by Dr. Judy Mikovits and Annette Whittemore
'In the research she had performed, simply trying to help her daughter, she saw the glaring similarities amongst CFS, Fibromyalgia, Gulf War Syndrome, Autism, Multiple Sclerosis, Parkinsons. These neuro-immune dysfuctions were common in families and in geographical cohorts. They knew they had something very important on their hands, and they’ve been committed to the neuro-immune cause ever since'

PART 2: 1/17/11 XMRV presentation by Dr. Judy Mikovits and Annette Whittemore
As a Chronic Lyme Disease patient, I found it very interesting that much of this conversation seemed to go back to Lyme again and again. During the presentation and the Q&A session. In the presentation they referenced a study where 65 Chronic Lyme Disease patients were tested for XMRV, and 100% came back positive. This was the most reactive group the WPI has seen. That is a higher rate than ME/CFS! I thought Annette Whittemore said it best, “Every time we hear something new about XMRV, we find a similar finding within Lyme. It’s amazing!"

Paula Carnes on Testing Negative staying positive

If you have any of these labels you may find you are XMRV positive: Lyme, MS, Parkinsons, ALS, peripheral neuropathy, autonomic neuropathy, dementia or Gulf War Illness.

XMRV Could Likely Be an emerging zoonotic disease

Early Events in Retrovirus XMRV Infection of the Wild-Derived Mouse Mus pahari

These data support the use of Mus pahari as a model for XMRV pathogenesis and as a platform for vaccine and drug development against this potential human pathogen.

I can't quite get my head around this following research. Why such a push for a vaccine when they still can't test properly for what the infections are, seems something dodgy to me, what are they frightened of?

A new approach to a lyme disease vaccine.
Livey I, O'Rourke M, Traweger A, Savidis-Dacho H, Crowe BA, Barrett PN, Yang X, Dunn JJ, Luft BJ.
Baxter Innovations GmbH, Biomedical Research Center, Orth an der Donau, Austria.
A single recombinant outer surface protein A (OspA) antigen designed to contain protective elements from 2 different OspA serotypes (1 and 2) is able to induce antibody responses that protect mice against infection with either Borrelia burgdorferi sensu stricto (OspA serotype-1) or Borrelia afzelii (OspA serotype-2). Protection against infection with B burgdorferi ss strain ZS7 was demonstrated in a needle-challenge model. Protection against B. afzelii species was shown in a tick-challenge model using feral ticks. In both models, as little as .03 μg of antigen, when administered in a 2-dose immunization schedule with aluminum hydroxide as adjuvant, was sufficient to provide complete protection against the species targeted. This proof of principle study proves that knowledge of protective epitopes can be used for the rational design of effective, genetically modified vaccines requiring fewer OspA antigens and suggests that this approach may facilitate the development of an OspA vaccine for global use.

Perhaps the most positive take home from all of this was included in Lannie in the Lyme light's second presentation where she quotes Judy Mikovits over the question of politics- Very confidently, and quickly she retorted, “I think the politics will go away shortly.”

A video will shortly be available on the
WPI website of their presentations.

Friday, 14 January 2011


Alzheimer's disease is very much in the news.

I have long been fascinated in the research Judith Miklossy has done finding Borrelia DNA, Lyme Disease in the hippocampus of the brains of people who had died after having Alzheimer's.

Miklossy then went on to research Alzheimer's and the role infections could have, finding spirochetes in the brains , spinal fluid and blood of patients who had died having had Alzheimer's and yet not finding them in her control group.

Judith Miklossy website is

Of course those who follow developments with Lyme Disease are aware that in fact Alan Mac Donald previously found Borrelia DNA in the brains of patients who had died after having Alzheimer's.

Sadly not enough research is being done in this field and the controversy over the IDSA Lyme Disease Guidelines will not help science move forward.

So it was heartening to hear of this study

Neuroinflammation Screening in Immunotherapy Trials against Alzheimer's Disease.

Andreasen N, Blennow K, Zetterberg H.
Memory Clinic, M51, Department of Geriatric Medicine, Karolinska University Hospital, Huddinge, 17176 Stockholm, Sweden.

Due to side effects in the form of meningoencephalitis in the interrupted phase II AN1792 trial of active antiamyloid β(Aβ) immunization against Alzheimer's disease (AD), there has been concern that anti-Aβ immunization may cause destructive neuroinflammation. Here, we report on two patients fulfilling clinical AD criteria who were diagnosed with Lyme neuroborreliosis during screening before inclusion in anti-Aβ immunotherapy trials. The two cases illustrate the necessity of careful biochemical screening for neuroinflammatory/neuroinfectious conditions before an AD diagnosis is made and before clinical AD patients are included in trials of therapy that could impact the immune system. Should the two cases have been included and deteriorated, additional investigations might have led to the erroneous conclusion that therapy-induced meningoencephalitis had occurred.

If only our doctors were more through in considering the role of infections as the cause of illness before putting us on Immuno -suppressants.

To quote Miklossy

Pathogens, in addition to a strong lymphoplasmocytic infiltrates, can induce slowly progressive chronic inflammation with poor or absent lymphoplasmocytic infiltrates (e.g. leprosy, syphilis). Activated macrophages and/or microglia are the principal players in this slowly progressive form of infection, which results in slowly progressive parechymal involvement and tissue atrophy.

Highest priority should be given to this emerging field of research.

It may have major implications for public health, treatment, and prevention of Alzheimer disease as adequate anti-bacterial and anti-viral drugs are available.

Treatment of a bacterial infection and associated viral infection may result in regression and, if started early, prevention of the disease.

The impact on reducing health-care costs would be substantial.

As it was the case for paretic dementia in syphilis, one may prevent and eradicate dementia in Alzheimer disease.

Tuesday, 11 January 2011


Many Recommendations Within Practice Guidelines Not Supported by
High-Quality Evidence, Study Finds

Science Daily (Jan. 10, 2011) — More than half of the recommendations in
current practice guidelines for infectious disease specialists are based
on opinions from experts rather than on evidence from clinical trials,
according to a report in the January 10 issue of Archives of Internal
Medicine, one of the JAMA/Archives journals.

Science Daily

"As with individual research studies, providers should critically evaluate guidelines and the evidence on which they are based and how relevant recommendations are locally at their institutions and in their patients," Dr. Powers concludes. "Especially for subspecialists, guidelines may provide a starting point for searching for information, but they are not the finish line. The fact that many recommendations are based on opinion should also serve as a call to future researchers to critically evaluate and study the questions that need better answers."


The controversy over the Infectious Diseases Society 2006 Lyme disease Guidelines are a very good case in point.

'The controversy over Lyme disease came to a head in
November 2006 when IDSA released new guidelines severely
limiting treatment options for patients with persistent Lyme
symptoms. The guidelines were so restrictive that the
Attorney General of Connecticut initiated an unprecedented
investigation into potential antitrust violations by IDSA, the
dominant infectious disease society in the United States, in
its formulation of the guidelines. The investigation found
significant conflicts of interest and suppression of data in the
guidelines development process. Raphael B Stricker, Lorraine Johnson ref

Several of the presentations at the Review of the IDSA 2006 Guidelines contested the level of evidence used to formulate those Guidelines.

Daniel Cameron MD, MPH IDSA Hearing Presentation

No evidence to limit most treatment
options on “not recommended” list
The 2006 IDSA panel:
• Did not cite Level 1 or II evidence
• Did not give specific reason why agent/modality on list
Panel’s conclusion: “Selected antimicrobials, drug
regimens, or other modalities not recommended for the
treatment of Lyme disease”
is NOT supported

Friday, 7 January 2011


Lyme disease: the next decade

(156) Article views
Authors: Raphael B Stricker, Lorraine Johnson
Published Date January 2011 , Volume 2011:4 Pages 1 - 9 DOI 10.2147/IDR.S15653 -->Raphael B Stricker, Lorraine JohnsonInternational Lyme and Associated Diseases Society, Bethesda, MD, USAAbstract:

Although Lyme disease remains a controversial illness, recent events have created an unprecedented opportunity to make progress against this serious tick-borne infection. Evidence presented during the legally mandated review of the restrictive Lyme guidelines of the Infectious Diseases Society of America (IDSA) has confirmed the potential for persistent infection with the Lyme spirochete, Borrelia burgdorferi, as well as the complicating role of tick-borne coinfections such as Babesia, Anaplasma, Ehrlichia, and Bartonella species associated with failure of short-course antibiotic therapy. Furthermore, renewed interest in the role of cell wall-deficient (CWD) forms in chronic bacterial infection and progress in understanding the molecular mechanisms of biofilms has focused attention on these processes in chronic Lyme disease. Recognition of the importance of CWD forms and biofilms in persistent B. burgdorferi infection should stimulate pharmaceutical research into new antimicrobial agents that target these mechanisms of chronic infection with the Lyme spirochete. Concurrent clinical implementation of proteomic screening offers a chance to correct significant deficiencies in Lyme testing. Advances in these areas have the potential to revolutionize the diagnosis and treatment of Lyme disease in the coming decade.Keywords: Lyme disease, Borrelia burgdorferi, L-forms, cysts, biofilms, proteomics

Go to the above link to download the article.

Dr Bransfield talked at the London ILADS conference June 2010 about the Decade of the Microbe.

The sooner researchers and doctors wake up to this the less patients will suffer from illnesses of 'unknown cause' and start getting treatment for the cause of their illness instead of palliative treatments aimed at just managing the symptoms ie Multiple Sclerosis, Fibromyalgia, Rheumatoid Arthritis, Polymyalgia Rheumatica, Autism and so many more.

I have been busy of late and not getting round to posting partly due to the holiday period but also because I seem to be finding so much of interest on Facebook about ME/CFS developments with XMRV, good news that Dr Sarah Myhill has her licence to practise back and lots of interesting information related to Lyme Disease. Much worthy of posting on my blog but I just haven't had time to do so. Anyone interested can follow the link top right of the blog to read some of the latest information there.