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Monthly Archives: June 2014

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Når ble flåttbåren sykdom alternativt?

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David møter Goliat i kampen for å bli sett, hørt og respektert. Medisinske sannheter varer ikke evig. Hvor lang tid vil det gå før neste medisinske sannhet står for fall?

Tekst: Hansson. Foto: Geir Dokken og NorVect.

Lege Preben Aavitsland proklamerer at han hjelper borreliosepasienter, men gikk nylig til frontalangrep på en pasientinitiert konferanse, hvis formål utelukkende var å bringe leger og forskere sammen for å dele kunnskap og skape dialog innen et område der vi fortsatt mangler kunnskap.

I hans polemiske innlegg omtaler han NorVects Internasjonale Konferanse om Vektorbårne Sykdommer for ”alternativ”, og postulerer at en kommersiell industri lurer pasientene til å tro på diagnoser og mirakelkurer. Ifølge Aavitsland er pasientene aktivister som på død og liv vil ha en diagnose og at det mest nærliggende er smitte fra en ”dødelig epidemi” som sprer seg via internett. I følge han, har pasientene ”kapret en diagnose og gjør den om til sitt formål”.

Det er skremmende at en lege uttaler seg så skråsikkert og arrogant innenfor et medisinsk felt der det fortsatt er mange ubesvarte spørsmål. Han behandler vitenskapen som et historisk ubestridelig faktum og at han selv besitter den fulle og hele sannheten. Det er en absurd situasjon for pasienter å være så syke, ikke få helsehjelp, og samtidig bli hengt ut som aktivister av leger i det offentlige rom.

En global epidemi av vektorbårne sykdommer

At vi står overfor en epidemi er ikke ubegrunnet. I over 65 land stiger smittetallene for borreliose. I USA oppjusterte helsemyndighetene det årlige smittetallet med 1000% i fjor. Vektorbåren smitte er en av de største helsetruslene vi står ovenfor. Derfor dedikerte også WHO verdens helsedag 2014 til dette temaet. Borreliose er heller ikke den eneste infeksjonen som kan smitte via flått – man kan få flere titalls infeksjoner ved ett enkelt flåttbitt, så vi står ovenfor en heterogen pasientgruppe som ikke bare er smittet av én, men flere multiple ko-infeksjoner.

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Ingen alternativ retning

La oss også legge all tvil til side. Dette er ingen alternativ retning ved siden av skolemedisinen. Det dreier seg om vedvarende infeksjoner som etter 2 ukers antibiotikabehandling fortsatt gjør pasientene syke – et fenomen som Aavitsland kategorisk avviser kan være mulig. De såkalte ”alternative legene” som holdt foredrag og inviterte til dialog på konferansen i mai, er erfarne klinikere og forskere med flere tiårs erfaring og flere hundre fagfellevurderte artikler. De har erfart at ved å kombinere antibiotika og forlenge behandlingen, kan man i betydelig grad bidra til en tilfriskning av denne pasientgruppen. I Norge anser man langvarig infeksjon for ikke-eksisterende. Men hvordan kan man avvise en pågående infeksjon, da nåværende borrelia-tester kun fanger opp 50% av tilfellene? Det foreligger minst 77 vitenskapelige artikler om persistent infeksjon til tross for konvensjonell behandling. I følge amerikanske helsemyndigheter behandler nå 56% av legene i USA lenger enn 2 uker og stadig flere stater endrer lovgivningen slik at leger gis frihet til å behandle utover normert tid. Da kan man spørre seg om hvor alternativt dette er?

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Sjarlataner og grove beskyldninger

Aavitsland var selv ikke tilstede på konferansen, men går ikke av veien for å rette ubegrunnede anklager mot flere, herunder bl.a. Prof. Shah. Hun leder et av de største referanselaboratoriene for flåttbårne sykdommer i USA og har over 20 års erfaring innen immunologi og mikrobiologi. At hun avdekker flere positive prøvesvar er ikke så underlig når det offisielle gjennomsnittet ligger på 50%? Retningslinjene krever minst 5 borreliaspesifikke bånd ved en såkalt Western Blot IgG test for å tolke et resultat som positivt, mens laboratoriet til Shah krever 2 bånd. Tolkningen er ulik verden over – i Kina kreves det kun ett borreliabånd for å slå ut positivt.

Testene til Infectolab i Tyskland blir nevnt som noe ”fagfolk” i Europa og USA advarer mot. Disse testene er dog godkjente og akkreditert av Tysklands øverste akkrediteringsmyndighet.

Aavitsland trekker frem beskyldninger mot Prof. Eva Sapi om forurensing av borreliatester til egen vinning, men unngår å nevne at testene umulig kan ha vært forurenset, fordi pasientprøvene befant seg i Pennsylvania, 30 mil unna laboratoriet i Connecticut, der kontrolltestene var oppbevart.

Han beskylder Dr. Burrascano for å ha mistet lisensen. Dette er en grov beskyldning av en lege som har aldri mistet autorisasjonen, men valgte etter eget ønske å stoppe som kliniker og fortsette som forsker innenfor Biotech. Dr. Horowitz, som har behandlet 12 000 pasienter i snart 30 år, anklages for å ha skrevet en bok om sin filosofi uten vitenskapelig hold. Hadde Aavitsland satt seg inn i dette temaet, ville han sett at boken er basert på flere hundre vitenskapelige referanser.

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Sabotasje og svertekampanjer

Aavitsland hevder at han beskytter pasientene, men i total mangel på empati og ydmykhet, gjør han det motsatte. Han medvirket til stengingen av Norsk Borreliose Senter, slik at hundrevis av pasienter mistet sitt behandlingstilbud. Han var pådriver for at Prof. Laane og Prof. Mysterud måtte stoppe sitt forskningsprosjekt og destruere alt materiale, til store protester fra pasienter som endelig hadde funnet mulige svar på lidelser det offentlige helsevesenet ikke har kunnet hjelpe dem med. Han initierte en email boikottkampanje ved nyåret med det formål å bevisst spolere et positivt samarbeid mellom helsemyndighetene og pasientorganisasjonene. Resultatet var at pasienter måtte ta opp private lån og samle inn midler for å gjennomføre konferansen i mai.

Hvilke krefter er det som er i sving her? Hva er motivasjonen når en lege, som aldri selv har behandlet en borreliosepasient, spolerer ethvert forsøk på å formidle forskning om de komplekse «emerging diseases» som sprer seg med akselererende hastighet verden over. Helsedirektoratet stilte på konferansen og uttrykte positivitet, engasjement og nysgjerrighet for dette fagområdet. Det er synd at leger som Aavitsland ikke kan gjøre det samme.

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Last week, the Swedish channel SVT broadcasted the Lyme movie: “Lyme Disease: A Silent Epidemic” by the French movie maker, Chantal Perrin. Without her knowing, the Swedish channel added 4 statements before the movie started. Read SVT’s statements and Perrin’s answers below:

Perrin’s answer to SVT:

Some countries like Switzerland, the Netherlands or the United States have made a serious step forward to a better understanding of Lyme disease. The 4 statements below represent the old vision. Canada, more than 10 US states have passed laws in order to allow Lyme doctors to treat their patients on a long term basis. Virginia has passed a law so that patients must be warned against the low accuracy of the serologic tests (the physician must warn their patient that negative tests do not mean that they are not carrying the infection) .

1) The film is produced in France and naturally reflects the french debate rather than the Swedish one.
(Filmen er producerad i Frankrike och speglar främst franska förhållanden och fransk debatt)

Answer: The film reflects the situation in most industrialized countries and not only France. A few countries have made an update and state that the description of the illness made in 2006 (the official guidelines), and the recommendations for diagnosis and therapy are not accurate and should be reviewed at the light of recent publications.

2) Swedish health authorities are convinced that Lyme disease as we know it is not chronic, and that antibiotics for more than three weeks is not scientifically motivated.
(Läkemedelsverket och Socialstyrelsen rekommenderar högst tre veckors antibiotika med hänvisning till att längre behandlingar inte visat sig ha bättre effekt)

Answer: Health authorities in some countries still maintain that Lyme disease can be cured with 3 weeks of antibiotic therapy. If that was the case there wouldn’t be a Lyme problem. It has been proved scientifically in several animal species and in humans that the bacteria Borrelia could resist after several months of antibiotic treatments. A major paper published by Monica Embers et al. in PLOS One confirmed this fact. Several open studies showed the efficiency of prolonged antibiotic treatment. Two randomized studies, which are published, showed the superiority of antibiotic versus placebo when a precise end-point was measured. A huge number of people around the world have seen severe symptoms diminished or disappear after a few months of combined anti-infectious drugs (antibiotics or natural treatments). The chronic or non chronic debate is irrelevant; These bacteria are persistent. They can take different forms to avoid the immune system and atbx treatments. The aim is to attack them in their different forms and that is the ground of research for many scientists around the world. Unfortunately, research on this topic is usually not very well funded because of the controversy.

3) The African borrelia is a different disease, caused by another bacteria than ours.
(Afrikansk borrelia ä en annan sjukdom än den i Sverige och vållas av en annan bakterie)

Answer: The African borrelioses are caused by one of borrelia species. It is still borreliosis. Lyme disease is the name that was given to the illness when it was discovered in the Lyme district at the end of the 70s. In Germany and Eastern Europe, scientists speak about borrelioses. B. crucidurae, found in Africa, is giving relapsing fever, that is the reason why it is often mistaken for malaria. This species is now isolated in Morocco, Spain and in the south of France. There are more than 30 strains or Borrelia found in humans and they each give different signs and symptoms (neurological, arthritic, cardiac ). New strains are discovered each year. B. miyamotoi is now identified in patients in Asia, Eastern and Western Europe, Canada and the USA. This species is usually not detected by routine serologic tests. It is responsible for both clinical pictures, either Lyme disease or relapsing fever.
The new Borrelia that have been discovered recently, especially Borrelia miyamotoi can be responsible in man for either Lyme-like disease or relapsing fever. This species, as the novel Borrelia sp. discovered in Boston (Lee et al. Int J Mol Sci 2014,15, 4284) are genetically belonging to the relapsing fever borreliae as the African strains like Borrelia crocidurae.

4) There is no evidence that rodents in our homes spread ticks. In Sweden the predominant agent is roe deer.
(I Sverige beror inte en eventuell ökning av borrelia på möss och råttor i bostäderna.)

Answer: Rodents are the reservoir of all borrelioses. The tick will be infected by biting a rodent and then will transmit to bigger mammals like dogs or human beings. The role of deer is to host the tick, especially when breeding. But the deer is not a reservoir of the disease as huge as the rodents are. You can find Lyme disease in forests without any deer. But a lot of deers or cattle means a lot of dwellings for ticks and thus an even greater number.

Conclusion : In my opinion, the film was giving a mild account of reality. We did not want to say all that we learned about those tick-borne diseases. We avoided talking about transmission although there is more and more evidence that there is foetal and sexual transmission. We also avoided mentioning that B. miyamotoi, one the most dangerous strain of Berrelia, is now found in the ticks of European forests like the Ardennes or in Alsace.

What may be different between France and Sweden is information and prevention, that exists in your country and not in France.

 

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A new study highlights the limitations of using serology alone in identifying Lyme disease

Abstract: Two-tier serology is often used to confirm a diagnosis of Lyme disease. One hundred and four patients with physician diagnosed erythema migrans rashes had blood samples taken before and after 3 weeks of doxycycline treatment for early Lyme disease. Acute and convalescent serologies for Borrelia burgdorferi were interpreted according to the 2-tier antibody testing criteria proposed by the Centers for Disease Control and Prevention. Serostatus was compared across several clinical and demographic variables both pre- and post-treatment. Forty-one patients (39.4 %) were seronegative both before and after treatment. The majority of seropositive individuals on both acute and convalescent serology had a positive IgM western blot and a negative IgG western blot. IgG seroconversion on western blot was infrequent. Among the baseline variables included in the analysis, disseminated lesions (p<0.0001), a longer duration of illness (p<0.0001), and a higher number of reported symptoms (p=0.004) were highly significantly associated with positive final serostatus, while male sex (p=0.05) was borderline significant. This variability, and the lack of seroconversion in a subset of patients, highlights the limitations of using serology alone in identifying early Lyme disease. Furthermore, these findings underline the difficulty for rheumatologists in identifying a prior exposure to Lyme disease in caring for patients with medically unexplained symptoms or fibromyalgia-like syndromes.

Alison W. Rebman, Lauren A. Crowder, Allison Kirkpatrick, John N. Aucott, June 2014, Clinical Rheumatology.

http://link.springer.com/article/10.1007/s10067-014-2706-z

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Some of the world’s best researchers and clinicians gathered at the NorVect conference in May!

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Photo: NorVect/Geir Dokken

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The Global Search for Education: Ticks – More from Norway

By: C. M. Rubin. Blogger and author, The Real Alice in Wonderland.

http://www.huffingtonpost.com/c-m-rubin/the-global-search-for-edu_b_5425169.html?utm_hp_ref=email_share

 

NorVect Global Tick-borne Diseases Conference in Oslo

Complicated problems usually have many dimensions and require multidisciplinary and interdisciplinary strategies to solve them. We talk about this approach in global 21st century education reform all the time, but we live in a world that sometimes forgets the lessons.

One of my loved ones became seriously ill in 2006 with joint pains, vertigo, memory loss and chronic fatigue. Two years of assessments for diseases ensued, including Parkinson’s, ALS, Alzheimer’s, Lyme disease, Fibromyalgia, Rheumatoid Arthritis, Depression, and various cancers. Ultimately, a doctor knowledgeable about Lyme and co-infections diagnosed him, recommending holistic care from a neurologist, a rheumatologist and an internist, while also focusing on improving his psychological health, his nutrition and his lifestyle.

Since this experience, I’ve felt tremendous compassion for all who have to endure this devastating illness. How can we better defend them? I’ve imagined a round table like King Arthur’s that would bring together the brave knights of medical science as well as passionate tick-borne disease advocates to harness the expertise of all; to explore, to uncover through honorable discussion how to find the holy grail: better diagnostic tools and ultimately a cure for multi-systemic tick-borne infections.

Timing is everything. The incidence of Lyme and other tick borne co-infections is rising in more than 65 countries worldwide — diseases that are plagued by inadequate tests leading many to believe there are still millions of undiagnosed cases. Research progress is slow because of disagreements on the unanswered questions related to diagnosis and treatment. Interestingly, more scientific voices are now expressing the opinion that clues lie in the disease’s similarity to syphilis and its ability to become chronic.

According to the CDC, chronic disease accounts for 70% of the deaths and 75% of the health care costs in the United States. Nip a potentially chronic disease in the bud and you are ahead of the game. Hesitate to take action and you’re facing enormous healthcare debt.

The talented women who run the NorVect organization have taken some major steps forward. They held an impressive global vector-borne conference this past week in Norway (which has seen a ten-fold increase in incidence in parts of the country during the past year). This extremely well attended forum was kicked off with an inspiring speech by the Norwegian Liberal Party Leader, Trine Skei Grande. I felt honored to co-host the proceedings.

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“We need to understand the method for making a clinical diagnosis and talk about the management of treatment protocol.” – Dr. Joe Burrascano

And so there were the knights of NorVect’s round table gathered to begin the conversation. Some highlights:

“Bartonella species are causing disease in animals and people in North America and throughout the world. They can induce persistent intravascular infection in humans that spans months to years, potentially resulting in vascular rheumatic and neurological disease manifestations.” – Dr. Ed Breitschwerdt

“Borrelia Burgdorferi does form a very organized biofilm. It provides a refuge from anti-microbial treatment. Preliminary results show borrelia biofilm in infected human tissues.” – Dr. Eva Sapi

“BB complex bacteria are transmitted to humans by the bites of infected ticks. These ticks also carry and transmit other pathogens such as Babesia, Ehrlichia, Bartonella, and Rickettsia species and viruses.” – Dr. Jyotsna Shah

“The complexity of Borrelia impacts the management of Borreliosis. We need to understand the method for making a clinical diagnosis and talk about the management of treatment protocol. Knowledge of Borrelia growth patterns can assist in making treatment decisions.” – Dr. Joe Burrascano.

“We still do not know the cause of the long term complaints after treated neuroborreliosis. There are several hypotheses. Is there a continuing infection? Are there permanent scars in the nervous tissue? What about auto-immunity? Immunological and metabolic dysregulation? Psychological issues? What about co-infections? There is still a lot to discuss and to explore.” – Dr. Randi Eikeland

“Treating all 3 forms of Borrelia, the agent of Lyme disease, while addressing biofilms, co-infections, inflammation, immune dysfunction, hormonal abnormalities, heavy metals, neurotoxins, sleep disorders, food sensitivities, Autonomic Nervous System dysfunction and nutritional deficiencies that are the most commonly found abnormalities on the Multi Systemic Infectious Disease Syndrome map, have the greatest impact on patients regaining health.” – Dr. Richard Horowitz

“Most of the IDSA recommendations are based on expert opinion and are not evidence based. Serologic methods done according to IDSA and EUCALB guidelines are insufficient methods to rely upon. There are probably millions of patients around the world who remain undiagnosed with Lyme and co-infections. In the near future, new genomic methods will allow the detection of a new pathogenic Borrelia species (like Borrelia Miyamotoi) and allow a better identification of various microbial agents responsible for co-infections.” – Dr. Christian Perrone

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“Please think of the patients who are anxious and who suffer, and also of the medical teams.” – Dr. Bela Bozsik

“The current CDC guidelines for diagnosing Lyme disease involve serological tests for Borrelia Burgdorferi (Borrelia-Immunoblot/Western blot testings) which show a very weak sensitivity of just around 60% in chronic Lyme disease and cannot help regarding the question of an active infection. Is Borrelia-Elispot a game changer in diagnostics? The sensitivity of ELISPOT is estimated at 84%, and the specificity is 94%. ELISPOT assays provide robust, highly reproducible data and can be retested for the acquisition of additional information in follow-up assays.” – Dr. Armin Schwarzbach

“Borrelia is involved in illnesses like Alzheimers, ALS and MS.” – Dr. Alan MacDonald

“It is important to develop microscope methods to detect blood infections – it is simple and it is cheaper.” – Dr. Carl Morten Laane

“A substantial amount of evidence definitely shows that the main tertiary forms of neurosyphilis, namely the meningovascular (cerebral infarcts secondary to chronic vasculitis) and meningoencephalitic forms, also occur in Lyme disease. These two major forms of late/chronic Lyme neuroborreliosis were pathologically confirmed. We reported the first pathological confirmation of the meningovascular form of Lyme neuroborreliosis in 1990 and the meningoencephalitic form was described and pathologically confirmed by many authors. Borrelia burgdorferi was repeatedly detected and/or cultivated from tertiary brain lesions. These evidences together indicate that chronic Lyme disease exists, and similarly to Treponema pallidum in syphilis, Borrelia burgdorferi is responsible for the tertiary manifestations of the disease. Late Lyme disease is accepted by all guidelines in the US and Europe. The terms late and chronic both define tertiary Lyme disease, therefore the use of chronic Lyme disease as a different entity is inaccurate and confusing.” – Dr. Judith Miklossy

“Please think of the patients who are anxious and who suffer, and also of the medical teams.” – Dr. Bela Bozsik

“The increased risk of infection due to the increased number of ticks carrying tick-borne infections may reduce the life quality of people in our region by preventing people from visiting forests and recreation areas. The social costs for society may also be influenced by increased hospitalization and visits to general practitioners. How can we get a common view among Norway, Denmark and Sweden of these problems?” – Dr. Ashild Andreassen

“I will develop my life for the greater good. I will place character above riches, and concern for others above personal wealth, I will never boast, but cherish humility instead, I will speak the truth at all times, and forever keep my word, I will defend those who cannot defend themselves…..” – Extract from the oath of a knight at King Arthur’s Round Table.

To be continued….

(With thanks to James Rubin for his contribution to this article)

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“Borrelia is involved in illnesses like Alzheimers, ALS and MS.”

– Dr. Alan MacDonald

(All Pictures are Courtesy of NorVect)

For more information on NorVect: http://norvect.no/

In The Global Search for Education, join me and globally renowned thought leaders including Sir Michael Barber (UK), Dr. Michael Block (U.S.), Dr. Leon Botstein (U.S.), Professor Clay Christensen (U.S.), Dr. Linda Darling-Hammond (U.S.), Dr. Madhav Chavan (India), Professor Michael Fullan (Canada), Professor Howard Gardner (U.S.), Professor Andy Hargreaves (U.S.), Professor Yvonne Hellman (The Netherlands), Professor Kristin Helstad (Norway), Jean Hendrickson (U.S.), Professor Rose Hipkins (New Zealand), Professor Cornelia Hoogland (Canada), Honourable Jeff Johnson (Canada), Mme. Chantal Kaufmann (Belgium), Dr. Eija Kauppinen (Finland), State Secretary Tapio Kosunen (Finland), Professor Dominique Lafontaine (Belgium), Professor Hugh Lauder (UK), Professor Ben Levin (Canada), Lord Ken Macdonald (UK), Professor Barry McGaw (Australia), Shiv Nadar (India), Professor R. Natarajan (India), Dr. Pak Tee Ng (Singapore), Dr. Denise Pope (US), Sridhar Rajagopalan (India), Dr. Diane Ravitch (U.S.), Richard Wilson Riley (U.S.), Sir Ken Robinson (UK), Professor Pasi Sahlberg (Finland), Professor Manabu Sato (Japan), Andreas Schleicher (PISA, OECD), Dr. Anthony Seldon (UK), Dr. David Shaffer (U.S.), Dr. Kirsten Sivesind (Norway), Chancellor Stephen Spahn (U.S.), Yves Theze (Lycee Francais U.S.), Professor Charles Ungerleider (Canada), Professor Tony Wagner (U.S.), Sir David Watson (UK), Professor Dylan Wiliam (UK), Dr. Mark Wormald (UK), Professor Theo Wubbels (The Netherlands), Professor Michael Young (UK), and Professor Minxuan Zhang (China) as they explore the big picture education questions that all nations face today.
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C. M. Rubin is the author of two widely read online series for which she received a 2011 Upton Sinclair award, “The Global Search for Education” and “How Will We Read?” She is also the author of three bestselling books, including The Real Alice in Wonderland, is the publisher of CMRubinWorld, and is a Disruptor Foundation Fellow.

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Presentations and movie(s) from the NorVect conference

We have gotten a lot of messages regarding access to the presentations from the NorVect conference as well as access to the film that was made during the two days.

It will still take some time to get everything ready and edited. Presentations will be available for the attendees of the conference. The movie(s) will be available download/purchase. More information will follow soon.

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