Oslo, the same city in which the Borreliose Center was just closed down by the Norwegian government, after taking away the medical license of its leading doctor Rolf Luneng. Norwegian people with Lyme need to go abroad now or need to take their government to court to receive proper treatment for it. Eivind Markus is a shocking example of this policy.
Norvect created the first International Conference on Vector-borne Diseases. Its main subject was how to find and treat Lyme Disease and its co-infections. The line-up was absolutely impressive. ILADS was represented by doctors MacDonald, Burrascano and Horowitz. Edward B. Breitschwerdt enlightening us on Bartonella. Eva Sapi and Jyotsna Shah showed why current testing methods do not work and how better ones do exist. Christian Perronne from France (who also was involved in the latest TV5 documentary about Lyme – password LD) told us about the scientific blunders in reasoning and the current witch-hunt on Lyme doctors and veterinarians. The Norwegian professor Motzfeldt Laane’s ‘performing arts’ was a great example of this witch-hunt, since he avoided getting fired from his university like this. The Swiss scientist Judith Miklossy made the comparison between Lyme and Syphilis, both medically and politically.
Norvect is a nonprofit organization dedicated to building and sharing vital knowledge about vector-borne diseases – particularly in the fields of diagnostics and treatment – across the Scandinavian countries. In cooperation with authorities and other interest groups, they arrange knowledge-leading seminars, conferences, and events covering leading international research and insights on vector-borne diseases. In doing so, they strive to create a platform for continuous improvement, and for an open and constructive dialogue between patients, their families, health practitioners, authorities, and politicians alike. NorVect is founded and run solely by patients with the desire to make a difference. As Siw and Sissel said at their introduction: two tick bites started this conference…
Doctor Burrascano, who has treated thousands of Lyme patients, has retreated from clinical practise to devote his time to train other doctors to prepare for dealing with the biggest epidemic of our times. ILADS offers a training program for doctors, for which they actually pay them to come over and get trained. Also this conference was aimed to doctors and goverments. Doctor Horowitz has even been asked by the Chinese government to come and advise them on how to deal with the rapidly increasing cases of Lyme infection.
The content was divided in two topics: how to find Lyme and how to treat it. Day one was spend on assessing and testing Lyme. The main question was how to best assess complex diseases that can have more than one cause (as opposed to the Pasteur postulation that every disease has a single cause, which dates from 1800) to help doctors and patients to best assess what is the matter. I found it educational to hear why ELISA and Western Blot test less accurate than flipping a coin: WB only tests on Band 31, which is a tick variation of the Borrelia instead of the ones found in people. ELISA performs so lousy it does not deserve any attention, in my opinion. Both miss more than 50% of the Lyme infections.
I also learned where the EM myth came from: apparantly the CDC once invited a group of Lyme patients with a clear EM ring for a research. The finding was that all infected people had.... a EM ring. Which makes sense, since all others were excluded. Great science. IGeneX, the leading reference laboratory for diagnosis of Lyme and associated diseases, presented more certain ways of testing for Lyme. Yet still there is no 100% valid test for it. They recommend a full panel of testing instead of relying on a single (not effective) test, which is what the DCD and IDSA try to force on doctors.
Dr. Horowitz, who treated over 12000 Lyme patients succesfully, presented his new MSIDS (Multiple Systemic Infectious Disease Syndrome) framework as a helpful guide into treating Lyme. In it he is trying to bridge the gap between medical and alternative approaches, he told me during lunch. Here is a short movie to get an impression.
The presentations can only be viewed by the participants, so I will make a second post within two weeks with more content. Here you can find information about dr. Horowitz's new book "Why can't I get better?" - the best book about Lyme for physicians and ill people until now, which includes the MSIDS framework with 16 points.
Professor Laane showed performing arts. He was threatened to lose his job if he would speak at the conference. So he did not. Accompanied by loud house music we saw a slideshow of the most amazing and colorful Live Blood images of the Borrelia.
Also the French scientist Perrone used art to express his worry about disappearing and frightened colleagues, who seem to be accused of effectively helping really ill people. This poem gave me the inspiration for the title of next year's conference, as you will read later. You can find his latest publication on Lyme via the Norvect Facebook page (so like it too).
Ross Anderson has started a patient initiative to collectively protect Lyme doctors, by launching a Class action suit against the CDC.
Maybe the most valuable information even came after the conference, sitting on a terrace talking woth a Norwegian lady who got infected by Lyme by a flee bite twenty years ago in California. I was told that the Norwegian ministery of Health (or Hell, as some call it) is training medical doctors how to deal with patients that know more than they do. The two major learning goals: 1. how to best neglect them & 2. how to stop having sympathy.
Since the CDC count has been off 1000% before, ILADS estimates the number of actual new infections in the USA at 3 million per year. The costs to effectively spot and treat an acute infection are around $100. The costs to treat late or chronic Lyme is around $20,000 per person. If the Lyme epidemic stays as ignored as it is now, it will cripple economies completely. Chronic diseases cause 70% of all deaths. Lyme seems to cause 80% of all chronic diseases and in the USA health costs are 75% of the health costs, which is one third of the total national budget.
Shining by absence
To put it mildly: we were very surprised that the only Dutch repressentation consisted of a Lyme patient, a widow from someone who had Lyme and who is now writing a medical case report of Lyme Neuroborreliosis and dementia, an alternative therapist and me from the On Lyme Foundation. Even the Rolling Stones were present in the same hotel. But no Dutch doctor or government official showed up. Not even minister Schippers, who did show up in Copenhagen the day after our congres. A matter of priorities, we suppose. This simple fact makes us wonder if the political claim on building a Dutch expertise center has any substance to it. Yet to underburden the government, we would be willing to receive the budget, and build up a proper Dutch Lyme expertise center together with ILADS.
Eivind Markhus was in his electrical wheelchair during the whole conference. Even though dr. Burrascano confirmed he tested positive on Lyme with both the IGeneX Western Blot test and the PCR, Eivind is being denied proper treatment by the Norwegian medical system. He is told he has ALS and that is that. He has taken the State to court already two times, yet without success this far. I promised him to write a blog post about him, to attract for international attention to his case.
Eivvind and the two ill founders of Norvect really inspired me to co-create a next international European conference about Lyme. In addition to medical solutions I would like to include a day on political solutions. The working title for this 2015 European conference is now 'From ticks to Poly Ticks'.