Archive for the ‘Lyme’ Category

Lyme & its Known Involvement in Mental Health

https://www.morgellonssurvey.org/borreliosis-lyme-disease-and-its-known-involvement-in-mental-health/

Borreliosis (Lyme Disease) and its known involvement in Mental Health

Borreliosis (Lyme Disease) and its known involvement in Mental Health

 

Scientists and physicians across the world have discovered that the growing numbers of people with mental illness and diseases of the nervous system are being cured or improved by treatment with antibiotics. In other words, it is now known that bacteria can make you mentally ill as well as physically ill!

From Croatia to California, from Sweden to Sicily, conditions such as Schizophrenia and Multiple Sclerosis, even Alzheimer’s disease and Stroke, are being found to have common to all one of the most insidiously infective bacteria on the planet, namely Borrelia.

This organism is similar to the bacterium that causes Syphilis, which was once the major cause of mental ill health before the days of penicillin. Both bacteria are large and spiral in shape, but Borrelia is turning out to be far worse than its cousin. Syphilis could be detected fairly easily and then killed with antibiotics, but Borrelia is harder to find, and then it is even more difficult to eradicate. Because it causes such a wide range of symptoms, from mild ‘flu-like fever to a rapid onset of psychosis, or from strange rashes to sudden heart-block, this nasty bacterium has spread without most of us realising it, around the world, in what is now being called a pandemic.

Perhaps its most miserable victims are those with hallucinations, panic disorders, manic depressive illness and ADHD, as well as those with the labels of Chronic Fatigue Syndrome and Myalgic Encephalomyelitis; for although the latter two conditions are recognised to be of a bacterial / viral cause by the World Health Organisation, the British medical establishment employees predominantly psychological intervention alone. Imagine being confined to a secure mental hospital, or treated with powerful antipsychotic drugs, or living for decades struggling to maintain normal memory and behaviour patterns, when all along there has been an infection secretly living in your brain and nerves. This bacterium may sometimes be the cause of anorexia, while in some of its victims it has been known to cause episodes of uncontrollable rage.

Other bacteria and viruses can wreak similar havoc: some of the ones that live harmlessly in our throats and on our skin are also able to invade our brains. Doctors and scientists are quite ready to acknowledge and search for things like HIV, Streptococcus and Herpes. But it is only recently that they are becoming aware that the Borrelia bug, one of the hardest to positively identify because of its so-called “stealth ” behaviour, must be high on the list for diagnosis.

European countries such as Austria, Germany, Holland and France, have alerted their GPs and specialists to the growing problem of Borrelia. Germany has twice polled every doctor in the country to determine the probable infection rate, and has found that it has doubled in the last 10 years. The Dutch have carried out similar surveys. In Austria, every GP’s waiting room has warning signs about Borreliosis. The disease is being spread by ticks that are carried on birds, on wild animals and on pets such as cats and dogs, even on horses. It has been found inside the stomachs of biting flies such as horse flies and cleggs and also in mosquitos and mites.

We present here several medical studies published in recent literature, which link mental illness and brain disease to known Borreliosis infection. There were few to be found that had been carried out in Britain; those quoted here are from the rest of Europe and the United States.


a) In a controlled study undertaken at Columbia University Department of Psychiatry, 20 children were examined following known infection of Borrelia burgdorferi (Bb), and were found to have significantly more psychiatric and cognitive difficulties. Their cognitive abilities were found to be below that of 20 matched healthy control subjects, even taking into account any effects due to anxiety, depression and fatigue during education. The study also discussed the long-term effects of the children’s infection with Borrelia, which had brought about neuropsychiatric disturbances and caused significant psychosocial and academic impairment.


b) An elderly lady treated at the Emperor Franz Josef hospital, Vienna, was initially admitted with suspected Motor Neuron Disease. Testing of fluid from her spinal column indicated the presence of Bb. Following antibiotic treatment, improvement was seen in the patient’s clinical symptoms, and further testing of spinal fluid demonstrated a positive response to the antibiotic treatment. The preliminary diagnosis of amyotrophic lateral sclerosis (ALS) was revised to one of chronic neuroborreliosis, the term given to infection of the central nervous system (CNS) by Bb.


c) A 64-year old woman was admitted to the psychiatric ward of the Sophia Ziekenhuis at Zwolle, in Holland. She was suffering from psychosis, with visual hallucinations, disorientation in time and space, and associative thinking. Psychotropic drugs failed to produce any improvement in her condition and further, neurological, symptoms developed. A lumbar puncture revealed the presence of Borrelia burgdorferi and after treatment with penicillin all of her psychiatric and neurological symptoms were resolved. From the history, which the woman was then able to communicate, it appeared she had been bitten by ticks. Her husband, aged 66, passed through a similar episode of disease.


d) In a comparative study carried out at the Prague Psychiatric Center, the blood of 926 psychiatric patients and that of 884 healthy control subjects was screened for four different types of antibodies to Borrelia burgdorferi. Of 499 matched pairs (meaning of similar age and gender but from patient and control group respectively) 166 (33%) of the psychiatric patients and 94 (19%) of the healthy comparison subjects were seropositive in at least one of the four test assays for Bb. This study supports the hypothesis that there is an association between an infection of Borrelia burgdorferi and psychiatric morbidity.


e) It has been well documented in numerous published medical studies of Borrelia’s ability to cause many recognized personality disorders and forms of depression; such as anxiety, depression, confusion, aggressive behaviour, mild to moderate cognitive deficits, fatigue, memory loss, and irritability. As such, the American Psychiatric Associations recommends that specialist doctors and councillors alike should seek to rule out Borreliosis as a possible differential diagnosis before commencing with any form of psychological intervention.


f) At the University of Rostock in Germany, a 42-year old female patient presented with schizophrenia-like symptoms but a complete lack of neurological signs. A brain scan and investigation of the spinal fluid led to the diagnosis of Lyme disease. There was complete relief of symptoms after antimicrobial therapy.


g) In a study of patients at a Boston, MA, hospital, scientists looked at patients with a history of Lyme disease who had been treated with short courses of antibiotics. As well as many physical symptoms, such as musculoskeletal impairment, the Lyme sufferers were found to have highly significant deficits in concentration and memory. Those who had received treatment early in the course of the illness had less long-term impairment.


h) At the Kanazawa University School of Medicine in Japan, a 36-year old woman with severe chronic Encephalomyelopathy was shown to have a very high level of antibodies to Borrelia burgdorferi. She showed severe cerebellar ataxia (walking and balance difficulties due to disease in the cerebellum) and profound mental deterioration. The disease had probably been acquired while she had been in the USA. The autopsy 4 years later showed the presence of spirochaetes throughout the brain and spinal cord, which together with the antibody evidence, demonstrated that the Lyme bacteria had caused this encephalitic form of neuroborreliosis.


i) Dr B. A. Fallon and his team at Columbia University Medical Centre in New York have done extensive studies on both adults and children with Lyme disease. They describe numerous psychiatric and neurological presentations of the disease, and show that it can mimic attention deficit hyperactivity disorder (ADHD), depression and multiple sclerosis. In another study, the same team found panic disorder and mania could be caused by Borrelial infection.


j) Scientists from Vancouver, Canada, and Lausanne, Switzerland, recently looked at post-mortem brain tissue samples from 14 patients who had had Alzheimer’s disease and compared them with 13 controls. All of the Alzheimer’s brains had infection with Borrelia-type organisms, compared to none of the controls. From 3 of the Alzheimer’s cases, they were able to carry out genetic and molecular analyses of these spirochaetes to prove beyond a doubt that they were Borrelia.


k) Following the detailed statistical analysis of all published literature on schizophrenia, (with the criterion that each study had to have detailed histories for at least 3000 patients), Swiss scientist Dr Mark Fritzsche was able to demonstrate that: “globally there is a striking correlation between seasonal and geographical clusters of both Multiple Sclerosis and Schizophrenia with the worldwide distribution of the Lyme bacteria.” Yearly birth-excesses of such illnesses were found to mirror, with an intervening nine-month period, both the geographical and seasonal patterns of various types of Ixodes tick. He also went on to further state “In addition to known acute infections, no other disease exhibits equally marked epidemiological clusters by season and locality, nurturing the hope that prevention might ultimately be attainable.”


l) Chronic fatigue syndrome has been found to be associated with infection by Borrelia. A study by the Department of Neurology at the University Hospital of Saarland in Homburg, Germany, investigated blood samples from 1,156 healthy young males, without knowing which ones were suffering from CFS. They saw a significant number with CFS sufferers who had Borrelia antibodies even though there were no other signs of borreliosis symptoms. They state that antibiotic therapy should be considered in patients with Chronic Fatigue Syndrome who show positive Borrelia serology.


m) Dr R. C. Bransfield in New Jersey, has found a significant number of Lyme patients exhibit aggression. Patients were described with decreased frustration tolerance, irritability, and some episodes of explosive anger which he terms “Lyme rage”. In relatively rare cases, there was uncontrollable rage, decreased empathy, suicidal tendencies, suicide, homicidal tendencies, interpersonal aggressiveness, homicide and predatory aggression.

The World Health Organisation has warned that mental illness appears to be increasing globally, and that depression will soon become the second biggest cause of disease on the planet. In Britain, it is estimated that new-onset psychoses have reached the annual level of 30 per 100,000 of the population. According to recent announcements, although there are at present about 900 consultant psychiatrists employed in the UK, with 400 posts vacant, there are plans to recruit 7,500 new psychiatrists in the next 5 years, a massive 5-fold increase.

The European Committee for Action on Lyme Borreliosis (EUCALB) has published epidemiological studies showing that there is a serious problem with tick-borne Borreliosis in Europe. For example, the UK’s nearest neighbour, Holland, has found 73 cases per 100,000 of the population per year, with an unknown number of missed diagnoses. The published figures for England, Ireland and Wales appear to be nearly 2 orders of magnitude lower than this, with only 0.3 cases per 100,000. Are cases of Lyme disease / Borreliosis not being found in Britain because it is still regarded as a rare disease in this country? Or do we genuinely have the lowest incidence in the world? Diagnosis of borreliosis is difficult, with tests for antibodies to the bacteria being the subject of great controversy at present. If a consultant has to look at a suspected case of the disease and believes it to be rare, and blood tests are unreliable, then the diagnosis will be biased, quite understandably, towards the patient having some other condition.

It is hoped that health professionals at all levels, and in all disciplines, will come to realise that Human Borreliosis is the fastest-growing, most prevalent zoonotic disease in the world, and has been called a modern pandemic by several authors, including epidemiologists, rheumatologists, neurologists and infectious disease experts. There seems to be little awareness in the UK at present about this situation, but we urge that it be recognised sooner rather than later, in the hope that both mental and physical illnesses due to Borrelia are successfully diagnosed and treated.

References

a)         A Controlled Study of Cognitive Deficits in Children with Chronic Lyme disease.

Tager, F.A., Fallon, B.A., Keilp,  J., Rissenberg, M., Jones, C.R., Liebowitz, M.R.

J Neuropsychiatry Clin. Neurosci. 2001;  Fall; 13(4): 500-7.

b)         ALS- Like  Sequelae in Chronic Neuroborreliosis.

Hansel, Y., Ackerl, M., Stanek, G.

Wien. Med. Wochenschr. 1995; 145(7-8): 186-8.

c)         Lyme Psychosis.

van den Bergen, H.A., Smith, J.P., van der Zwan, A.

Ned. Tijdschr. Geneeskd. 1993; 137(41): 2098-100.

d)         Higher Prevalence of Antibodies to Borrelia burgdorferi in Psychiatric Patients than in Healthy Subjects.

Hajek, T.,  Paskova, B., Janovska, D., Bahbouh, R., Hajek, P., Libiger, J., Hoschl, C.

Am. J. Psychiatry 2002; 159(2): 297-301.

e)            Highlights of the 2000 Institute on Psychiatric Services.

Guardiano, J.J., von Brook, P.

Jan. 2001, 52(1): 37-42.

f)          Borrelia burgdorferi Central Nervous System Infection Presenting as Organic Psychiatric Disorder.

Hess, A., Buchmann, J., Zettel, U.K., et al.

Biol. Psychiatry 1999; 45(6): 795.

g)         The Long-term Clinical Outcomes of Lyme disease. A Population-based Retrospective Cohort Study.

Shadick, N.A., Phillips, C.B., Logigian, E.L., Steere, A.C. et al.

Ann. Intern. Med. 1994; 121(8): 560-7.

h)         Borrelia burgdorferi Seropositive Chronic Encephalomyelopathy: Lyme Neuroborreliosis? An Autopsied Report.

Kobayashi, K., Mizukoshi, C., Aoki, T., Muramori, F.et al.

Dement. Geriatr. Cogn. Disord. 1997; 8(6): 384-90.

i)    (1) Late Stage Neuropsychiatric Lyme Borreliosis.

Fallon, B.A., Schwartzburg, M., Bransfield, R., Zimmerman, B. et al.

Psychosomatics 1995; 36(3): 295-300

(2) Functional Brain Imaging and Neuropsychological Testing in Lyme Disease.

Fallon, B.A., Das, S., Plutchok, J.J., Tager, F. et al.

Clin. Infect. Dis. 1997; Suppl.1: 557-63.

j)          Borrelia burgdorferi Persists in the Brain in Chronic Lyme Neuroborreliosis and may be associated with Alzheimer disease.

Miklossy, J., Khalili, K., Gern, L.,  Ericson, R.L., et al.

J. Alzheimer’s Dis. 2004; 6(6): 639-649. 

k)   (1) Chronic Lyme Borreliosis at the root of Multiple Sclerosis – is a cure with Antibiotics attainable?

Fritzsche, M.

Med Hypotheses 2005; 64(3): 438-48.

(2) Geographical and Seasonal Correlation of Multiple Sclerosis to Sporadic Schizophrenia.

Fritzsche, M.

Int. J. Health Geog. 2002; 1: 5.

l)          Chronic Fatigue Syndrome in Patients with Lyme Borreliosis.

Treib, J., Grauer, M.T., Haas, A., Langenbach, J. et al.

Eur. Neurol. 2000;  43(2): 107-9. 

m)            Aggression & Lyme disease.

Bransfield, R.C.

14th International Scientific Conference on Lyme Disease and other Tick-borne Disorders. April 22-23, 2001, Hartford, Connecticut.

___________________

For More:  https://madisonarealymesupportgroup.com/2015/10/18/psychiatric-lymemsids/

https://madisonarealymesupportgroup.com/2018/12/20/diagnosing-ld-in-children-with-neuropsychiatric-illness/

https://madisonarealymesupportgroup.com/2019/02/16/lyme-is-all-in-your-head-a-wake-up-call-to-mental-health-professionals/

https://madisonarealymesupportgroup.com/2018/08/25/neuropsychiatric-lyme-borreliosis-an-overview-with-a-focus-on-a-specialty-psychiatrists-clinical-practice/

https://madisonarealymesupportgroup.com/2018/06/04/ld-diagnosis-took-forever-because-of-mental-health-stigma/

https://madisonarealymesupportgroup.com/2017/04/11/hidden-invaders-infections-can-trigger-immune-attacks-on-kids-brains-provoking-devastating-psychiatric-disorders/

The Shortfalls of H.R. 220 National Lyme and Tick-Borne Diseases Control and Accountability Act of 2019 – The Devil is in the Details

https://www.linkedin.com/pulse/shortfalls-hr-220-national-lyme-tick-borne-diseases-control-osborn/

By Linda Osborn

The Shortfalls of H.R. 220 National Lyme and Tick-Borne Diseases Control and Accountability Act of 2019 – The Devil is in the Details

The new Lyme Bill HR 220 drafted by Congressman Chris Smith R-NJ and Pat Smith, Executive Director of the Lyme Disease Association was introduced to the House Committee on Energy and Commerce on January 3, 2019. To grasp the shortfalls of this bill, one needs to understand the layers of complexity that stem from the: 
  • History of the Lyme epidemic.
  • Controversy over PTLDS vs. Persistence of infection.
  • Current day activities underway to ensure ‘the history’ isn’t rewritten by the truth being revealed through current research and publications.

The following is a re-cap of what I perceive to be the shortfalls of this new bill and recommendations for improvement. For individuals that are not familiar with the issues bulleted above, there are links to information that support the claims and recommendations. Before diving into those devilish details, note the irony in the bill’s name which includes the term ‘accountability’. There is no call for accountability in the bill’s wording.

A quick Disclaimer: I’m not a legislator, physician or scientist. So, you may ask, “Why does my commentary matter?” Indeed it is a fair question. and I will clarify – this is my opinion as a patient that has been participating in Lyme Disease Activism since 2013. It is based on:

  • Facts published in scientific/medical journals and books published by MDs and Journalists and accomplished Global/Government Activists.
  • Information presented at Accredited Medical Conferences I have both attended and personally managed.
  • Communication and collaboration with MDs that have extensive experience diagnosing and treating tick vectored infections.
  • Participation on a committee called GOTCHA – The Global Oversite for Transparency in Health Care Alliance.
  • Participation in and/or observation of all public meetings of the Federal Tick Borne Disease Working Group.
  • Perhaps most importantly, my personal experience battling multiple tick-vectored infections that were not diagnosed in a timely fashion and therefore persist despite extensive antibiotic and supplement treatments prescribed by “experts”.

Shortfall 1: Ignoring Past Mistakes

It appears this Lyme bill was written under the assumption that prior research and previous actions were accurate and appropriate. Revisiting the history of Lyme disease and the epidemic mis-management by multiple entities is essential to drafting an effective legislation that will curb epidemic growth and bring world class diagnostics and therapeutics to the global marketplace. The following links provide a re-cap of the scientific and moral issues of the past and punch holes in the assumption that all prior decisions and actions were effective.

The History of Lyme Disease is A 42 minute Vimeo by Dr. Joseph Burrascano Jr. Dr. https://vimeo.com/306846706

$lyme – A book detailing the corruption and greed surrounding the epidemic written by Jenna Luche Thayer https://www.amazon.com/Lyme-Medical-Mortally-Corruption-Scientific-ebook/dp/B07HVNN9FG

A lawsuit : Insurers Accused of Conspiring to Deny Lyme Disease Coverage https://www.courthousenews.com/insurers-accused-conspiring-deny-lyme-disease-coverage/

Recommendation 1: Correct History

This bill should call for a congressional investigation of the actions of any and all entities which resulted in the mis-management of the epidemic. Individuals that are identified as accountable for inappropriate and/or unethical behaviors, should be permanently barred from participating in any actions spelled out in this bill. This investigation should include a re-examination/recertification of any laboratories involved in handling of infectious pathogens for diagnostics, therapeutic or research and development studies. Criminal and civil charges should be filed and prosecuted accordingly. This is called accountability.

Shortfall 2: Recommendations from The Federal Tick Borne Disease Working Group

The Lyme bill’s language and proposals rely heavily on input and outcomes of the Federal Tick Borne Disease Working Group (TBDWG). Unfortunately, there are issues with TBDWG. Including conflicts of interest, violations of sunshine laws and anti-patient biases.  

https://madisonarealymesupportgroup.com/2018/02/11/anti-patient-bias-embedded-in-tickborne-disease-working-group-and-its-subcommittees/

https://www.linkedin.com/pulse/role-lyme-innovation-conflicts-interest-tick-borne-jenna-luche-thayer/

The TBDWG’s key patient representative heads Lyme Disease Association (LDA) a 501c organization whose sources of funding are redacted on the 990 tax filing and therefore are unknown to the general public. LDA will be able to financially benefit from the bill as described on page 19 of the bill under the section called “GRANTS” which states: “The Secretary may award grants to or enter into contracts or cooperative agreements with, public or private nonprofit entities to carry out activities under the paragraph.” If you are not familiar with why this is problematic, read up on “dark money”. https://www.opensecrets.org/dark-moneyorganization. 

Recommendation 2: Remove the recommendations of and all references to the TBDWG.

The TBDWG should be disbanded until the outcome of a congressional investigation recommended in section 1 is published and individuals accountable for any potential corruption and unethical practices are identified and charged accordingly.

Shortfall 3: Tricky Language

Language can be used to convey honesty or deceive. The most important issue (and controversy) surrounding lyme disease to date is the debate over “infection persistence vs. the false nomenclature “post treatment lyme disease syndrome” – PTLDS. PTLDS is a made up term created to sidestep the growing body of scientific evidence that late stage disseminated lyme disease is resistant to current antibiotic protocols of any duration for reasons including but not limited to the formation of persister cells, down regulation of the immune system and the stealth mechanisms of the pathogen itself. Below is a link to just one of 700 journals that provide proof of “chronic lyme”. The TBDWG adopted the term PTLDS and uses it routinely in their Congressional Report – and that is a paramount concern.

https://aac.asm.org/content/59/8/4616 Borrelia Burgdorferi, the Causative Agent of Lyme Disease, Forms Drug-Tolerant Persister Cells.

The following document by Jenna Luche Thayer (Author of $lyme) narrates how the term PTLDS can be used to restrict treatment and deny infection persistence. The adoption of the invented term PTLDS will protect insurance companies profits while leaving patients under insured and insufficiently treated. https://www.linkedin.com/pulse/attention-lyme-communitywords-matter-jenna-luche-thayer/

Page 3 of the Lyme bill, lines 3 – 6 states: “Development of treatments to cure or improve the lives of those who are infected with Lyme disease or other tick-borne disease or who suffer from a tick induced disorder.” The wording “other tick induced disorder” appears to be a deception and placeholder for PTLDS. The term “other disorder” is used ten times in the bill.

Recommendation 3: Remove the terms PTLDS and “other disorder”.

Replace the terms PTLDS and “other disorder” with late stage disseminated lyme disease, persistent lyme disease or treatment resistant lyme disease.

Shortfall 4: Controlling the Narrative by Dominating Diagnostics/Treatment Options

Page 12, of the Lyme bills states: “The Secretary, in cooperation with the Director of the Office, and acting through the Directors of the Centers for Disease Control and Prevention and the Director of the National Institutes of Health shall conduct and support research to provide for the timely evaluation of promising new and improved diagnostics methods including direct detection tests, antibody-based tests, and tests based on bio signature and biomarker profile to make a specific diagnosis or aid in differential diagnoses. “

This sounds good. There is nothing inherently wrong with funding research for an ideal diagnostic solution. However, there are already diagnostic methods superior to the current CDC/IDSA recommended two-tier ELISA Western Blot which is the “gold standard” accepted and covered by insurance plans. It has been scientifically well documented that this method is as effective as a coin toss. Unfortunately, the superior tests are NOT covered by insurance and financially out of reach for most patients. This is an example of rigging the diagnostic game. Below is an article about the lawsuit filed against the CDC for doing just that. The suit charges the CDC “of employing false, pseudo-scientific theories in order to justify its own anti-consumer actions aimed at perpetuating Lyme disease testing by a flawed technology.” https://www.apnews.com/f018456adcbf4d5c94596963b04fc54d

The other questionable issue with the bill’s diagnostic research language is the ‘biomarker profile’ language. John Aucott, Chairman of the TBDWG has a patent for biomarker technology. (There is that conflict of interest issue again.) Read the document below to connect the trail of breadcrumbs linking PTLDS, the bill’s language of “other disorder” and John Aucott’s filed patent for biomarker. Aucott, filed a patent for a biomarker known as CCL19. Question: Will this biomarker be used to determine treatments for those designated as having PTLDS? Of utmost concern is that MDs will be forced to re-lable patients that have persistent infections with PTLDS (the “other disorder” ) and discontinue treatment of later stage neurological and cardiac infections. The concern is based on prior actions outlined in both law suits linked above that name the CDC as a defendant.

Recommendation 4: Provide patients with a financial safety net by requiring health insurance companies extend coverage for all diagnostics and treatments.

Since at this time there is no 100% accurate diagnostic, add language to this bill that mandates insurance carriers cover all available diagnostic options allowing MDs to choose the test they think is best for the patient. In addition, insert language that acknowledges the scientific body of evidence confirming infection persistence and congenital infection. Mandate insurers cover treatment as recommended by physicians without arbitrary guidelines outlined in the book SLYME referenced in section 1 until such time a 100% effective therapeutic is validated and brought to market at which time Congress can re-visit regulations for insurance coverages of therapeutics.

Shortfall 5: – Censorship Disguised as Collaboration

Page 33 section 8 of the Lyme bill calls for a Common Research Bibliography. News Flash: We already have one. It’s called the internet. Specifically, the bill says: “The Secretary, in coordination with the Director of the Office, shall direct the Director of the Agency for Healthcare Research and Quality to assemble a bibliography of peer reviewed literature of tick-borne diseases and disorders in the United States, as well as for bartonellosis from whatever cause, appropriately organized for use by the scientific community treating physicians and the public. The bibliography should include literature relating to possible mechanisms of persistent infection with Borrelia Burgdorferi or other types of Borrelia. In conducting and supporting activities under this section, the Secretary shall give priority to Lyme disease and other tick borne diseases based on assessments of disease burden in the United States.

This clause will enable a few (questionable) people to cherry pick research that favors the TBDWG recommendations and term PTLDS. The qualifying term “possible persistence” casts doubt on and discredits the scientific proof of infection persistence. This will permit selected individuals to censor research proving infection persistence and congenital infection -both of which are being experience by patients and documented by research worldwide. Congenital infection has been scientifically proven and was incorporated in the World Heath Organization ICD 11 Diagnostic Codes. https://globallymealliance.org/news/ground-breaking-recognition-lyme-borreliosis-11th-international-classification-diseases/ Unfortunately the code for congenital lyme was recently removed under questionable circumstances that are currently under investigation.

Recommendation 5: No Common Research Repository

The call for a Common Research Repository should be struck from the bill entirely as it is an over-reach of government authority and waste of tax payer dollars. Remove the term “possible persistence” from the bill and replaced with terms such as treatment resistant infection, persistent infection etc.

Shortfall 6 – HHS Control Physician Education & Training

Page 23 section D of the Lyme bill states: “The secretary shall carry out a physician education program that addresses the full spectrum of scientific research related to Lyme Disease and other Tick-borne diseases and disorders….”

Giving the HHS control of physician education is government over-reach and wasteful use of tax dollars. Physician training should be designed and implemented by Universities that teach medicine. Organizations such as International Lyme and Associated Disease Society and the Lyme Disease Association have been a stop-gap measure providing physician education about tick-vectored infections because the institutions that should be have dropped the $lymy green ball.

Recommendation 6: Demand Medical School Curricula Revisions.

Rather than divert tax dollars to physician training dictated by the government, the bill should include language that requires all medical schools to set specific measurable educational goals for updating curricula by a specified date to reflect current research discoveries using complete and full access to all scientific research available without censorship. This should include continuing education programs for current licensed physicians.

Shortfall 7 – Exclusion of Global Expertise

Tick vectored infections are not isolated to the US. It is a global issue. There is no call for involvement of other global experts or the World Health Organization in this bill. The recent removal of the Congenital Lyme ICD code from WHO ICD Code 11 is evidence that the US and other endemic Nations should pool resources and funds to address the issues collectively.

Recommendation 7 – Replace the TBDWG with an International Panel

The bill should include the formation of a Global team that would replace the TBDWG upon the conclusion of a Congressional Investigation into the US’s mismanagement of the epidemic. The panel must bar the participation of those with financial conflicts of interest or prior involvement in immoral/illegal actions identified through congressional investigation. The global panel should comprise equal parts scientists, physicians, and patients. Let’s leave the government out of it, shall we?

Closing Comments

There are a lot of unsavory entities and individuals make gobs of money off the human suffering caused by the debacle that is the Lyme epidemic. I see no harm in pharmaceutical companies and scientists making profits from erectile disfunction medications and other discoveries that improve the quality of life. But given the epidemic of greed, income inequality and well documented prior bad acts, perhaps we should draw a line on profiting off of zoonotic, infectious diseases that are linked to mental illness an suicide. The award-winning Lyme documentary Under Our Skin, and its sequel, Under Our Skin 2: Emergence are now both available for free viewing by members of Amazon Prime. One of Under Our Skin’s #assets is it calls out prior legislation that enabled this mess to unfold in the first place. If you haven’t seen it, I highly recommend you give it a watch.

Live Q & A Webinar – Lyme Disease

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Whether you suspect you have Lyme disease, have recently been diagnosed, or have been struggling with chronic symptoms for a long time, we know you have questions — lots of them. You’ve come to the right place for answers. 

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Since his recovery more than a decade ago, Dr. Rawls has helped thousands of patients find their path to healing from Lyme disease and chronic illness. Now, he’d like to help you. Come with your questions, and he’ll answer as many of them as possible.

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Controversy to Consensus: Taking A Stand 4 Lyme

https://www.einnews.com/pr_news/476738556/controversy-to-consensus-taking-a-stand-4-lyme

Controversy to Consensus: Taking A Stand 4 Lyme

Stand4Lyme Foundation’s educational Lyme video is catching the attention of those who need to listen

CUPERTINO, CALIFORNIA, USA, March 19, 2019 /EINPresswire.com/ — Controversy to Consensus: Taking A Stand 4 Lyme

Stand4Lyme’s video is catching the attention of those who need to listen

Stand4Lyme® Foundation’s video, Taking A Stand 4 Lyme, is making a positive impact demonstrating the first high-level, multidisciplinary consensus regarding the serious nature of tick-borne diseases. Facts stated by over 10 heads of departments at a major institution have caught the attention of those who need to listen. Controversy has stagnated federal funding for tick-borne disease research for decades. This educational video is being distributed to senators and congressman. The goal of this video is to help educate all stakeholders from a scientific perspective and garner increased government support and funding. 

In Stand4Lyme Foundation’s credible and critically needed video, scientists tackle the Lyme disease epidemic. Experts address the serious consequences of Lyme and tick-borne diseases, an increasing source of morbidity and mortality worldwide. Stand4Lyme makes a clear business case for pharmaceutical support and federal research funding to develop reliable diagnostic tools and accessible, effective medical treatment.

In a time when Lyme disease is fraught with controversy and basic assumptions about Lyme and tick-borne disease are being called into question, we need robust studies that utilize technological advances for highly sensitive and comprehensive characterization of the host-pathogen interaction now more than ever, as tick-borne diseases are increasing at an alarming rate global, as well as the number of patients who remain ill after treatment.

Feedback received on the Taking A Stand 4 Lyme video has been extremely positive from senators, scientists, physicians, and patients, as well as media.

1. Senators responded with appreciation. Many thanked Stand4Lyme for creating and sharing the important information in the video, Taking A Stand 4 Lyme.

2. Scientists love it. The Stand4Lyme video demonstrated the first high-level, multidisciplinary consensus regarding the serious nature of tick-borne diseases. We hope this resonates with the folks at the NIH.

3. Physicians have requested, and been granted permission, to put the Stand4Lyme video on their websites. Many stated that they learned something from the video,

4. Patients feel validated and hopeful. The video has helped family members increase understanding and compassion around Lyme and other tick-borne diseases, as well as, clearing up misconceptions.

5. A leading internet entertainment service has expressed interest in making a tick-borne disease documentary inspired by the Taking A Stand 4 Lyme video.

Please share this critically needed, educational video: Taking A Stand 4 Lyme
Learn more at: Stand4Lyme.org.

Consensus is the path to change
Why isn’t there more government support for Lyme and other tick-borne diseases, largely because of a lack of consensus among Lyme and other tick-borne disease epidemiology and advocacy groups, therefore, discrepancies get tabled in Congress. Stand4Lyme encourages collaboration among all stakeholders, diligently advocating for a global Lyme and tick-borne disease perspective and consensus. “To change the current trajectory, we must build a consensus to receive the adequate research funding support needed to resolve the public health epidemic of Lyme and other tick-borne diseases and to develop solutions for the millions of Lyme patients that remain debilitated,” says Sherry Cagan, Stand4Lyme Foundation president and founder.

About Lyme disease
The Lyme disease bacterium, Borelli burgdorferi, is a spirochete similar to syphilis. Lyme disease is the fastest-growing infectious disease in the United States and the most common vector-borne disease worldwide, now prevalent in all 50 states and over 80 countries. According to the CDC, there are over 300,000 new cases each year, yet Lyme research remains significantly underfunded. Currently, there is no known cure and diagnostic tests are unreliable, subjecting patients to suffering, loss of physical and cognitive function, and occasionally death. A tick can transmit multiple bacterium in one bite, making diagnosis and treatment difficult. Lyme patients are often misdiagnosed as having other diseases such as rheumatoid arthritis, multiple sclerosis, ALS, autism, and Alzheimer’s.

About Stand4Lyme Foundation
Stand4Lyme® Foundation joins forces with scientists to pave a medical path to wellness for Lyme disease patients, with the goal of ending the prolonged suffering of millions. With a strategic mission, the Stand4Lyme Fund, established at the Stanford School of Medicine, helps support the Stanford Lyme Disease Working Group and their collaborators’ research. Stand4Lyme is dedicated to accelerating a cure for Lyme disease by actively facilitating promising studies of key collaborators with resources to transform the currently underfunded Lyme paradigm. Stand4Lyme is a Silicon Valley–based 501(c)(3) charitable organization and is volunteer led. Tax ID: 47-5095146; Stand4Lyme.org .

Sherry Cagan President/Founder
Stand4Lyme Foundation
…..
email us here

Taking A Stand 4 Lyme: Scientist Tackle the Lyme Epidemic

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**Comment**

If you haven’t seen this video, you need to.  This is probably one of the best videos I’ve seen.  Please share this with others.  There is some great work being done.  Don’t give up hope!

It’s also located in the Video section in this website.  The tab for this is at the top of the website under “Videos.”  https://madisonarealymesupportgroup.com/videos/ along with other helpful videos on everything from patient testimony, pathology findings, and advocacy endeavors.

If you know of others that are worth sharing, please forward to me.

 

 

Raising Red Flag Over Lyme

https://www.suncommunitynews.com/articles/the-sun/raising-red-flag-over-lyme/

Raising red flag over Lyme

Eagle Lake resident warns public to take disease seriously

BY MARCH 1, 2019

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**Comment**

  1. We still don’t know everything about why some become chronically ill, and while delays in diagnosis are a factor, treatment failures have been documented since the beginning:  https://madisonarealymesupportgroup.com/2019/02/22/why-mainstream-lyme-msids-research-remains-in-the-dark-ages/
  2. There is also the issue of there being more subsets of patients besides “acute” and PTLDS:  https://madisonarealymesupportgroup.com/2019/02/25/medical-stalemate-what-causes-continuing-symptoms-after-lyme-treatment/
  3. Until the pleomorphic and polymicrobial nature of Lyme/MSIDS is recognized, patients are doomed:  https://madisonarealymesupportgroup.com/2018/10/30/study-shows-lyme-msids-patients-infected-with-many-pathogens-and-explains-why-we-are-so-sick/
  4. Blood tests for Lyme/MSIDS is abysmal, missing over half of all cases.  There has been a concerted suppression of microscopy and other forms of testing:  https://madisonarealymesupportgroup.com/2018/10/12/direct-diagnostic-tests-for-lyme-the-closest-thing-to-an-apology-you-are-ever-going-to-get/, https://madisonarealymesupportgroup.com/2019/02/27/should-lyme-patients-rico-lawsuit-include-yale/
  5. Climate change has NOTHING to do with this:  https://madisonarealymesupportgroup.com/2018/08/13/study-shows-lyme-not-propelled-by-climate-change/, https://madisonarealymesupportgroup.com/2018/11/07/ticks-on-the-move-due-to-migrating-birds-and-photoperiod-not-climate-change/

“The authorities have been using tick expansion and climate change to get research dollars. Climate change is a popular topic right now, and that is a great source of funding for related research. However, any research on ticks and climate change is inconclusive––in essence, there is no validity. The long-range, futuristic projections and statistical models are bogus science because blacklegged ticks have already been found in northern Canada. In fact, we documented blacklegged ticks on migratory songbirds in northern Alberta dating back to 1998. Any allocation of government funding for ticks and climate change research is a complete waste of taxpayers’ money. It will not help Lyme disease patients one iota.”  Independent Canadian tick researcher, John Scott

Few LLMD’s take insurance forcing patients to pay expensive long-term bills out of pocket. Insurance companies are the ones coming after doctors who dare to treat in a way that is outside the CDC guidelines of essentially 21 days of doxycycline:  https://www.dailykos.com/stories/2012/01/29/1059800/-Wisconsin-Lyme-doctor-gets-reprieve?  Once they flag a doctor they nit-pick until they find any little thing:  https://sciencebasedmedicine.org/chronic-lyme-vip-daniel-cameron-disciplined-by-new-york-medical-authorities/

The Lyme Wars are far from over.

https://madisonarealymesupportgroup.com/2017/10/24/lyme-wars-part-1-julias-story/

https://madisonarealymesupportgroup.com/2017/10/25/lyme-wars-part-2-kyra-overcomes-chronic-lyme-diagnosis/

https://madisonarealymesupportgroup.com/2017/10/26/lyme-wars-part-3/

https://madisonarealymesupportgroup.com/2017/10/27/lyme-wars-part-4/

https://madisonarealymesupportgroup.com/2017/10/28/lyme-wars-part-5-coinfections/