søndag den 22. januar 2017

Attack on my Autonomy

I want to email the authorities and ask them whether they ever took ethics courses. Because even if they are right that the tick didn't infect me with something, it's still blatant that the test is limited in several ways, for example the exclusion of non-borrelia infections. I don't support them in their certainty. So is it moral to completely sabotage my access to a standard course of antibiotics as well as my access to further/wider testing? Is it defensible, even if they're right, in a case where the patient is informed and disagrees with them?

The ultimate consequence of this 'moral loophole' is that my judgment has to be rendered delusional, or else they look bad for denying me what I ask for. My continued insistence that they rely on sketchy unreliable premises has been made central to my new diagnosis. It's a symptom. My insistence is a form of obsessive delusion typical of psychiatric patients. This way, the more I insist and speak about tick infections, the more mentally ill I appear to be.

The problem with this attack on me is that doctors agreed fully with my assessment, until the antibody detection test of the three subspecies came back negative from the laboratory. Then the doctors, following their guidelines, simply trusted their orders and declared me non-infected.

But why then is my journal full of mentions of a visible erythema migrans rash?

Why did a room full of doctors agree that an infection seemed likely and a spinal tap justified?

 Why do lots of experts agree that reality has proven the test unreliable?

The main difference between my conviction and that of the authorities is that I don' trust the science backing the guidelines. Just like most 'lyme science' was criticized for being 'sub standard' by the danish guideline co-author Ram Dessau, I know that the old foundation for lyme policies has been criticized for being badly designed. (for example in the "No Small Thing" article series)

I think that more than three subspecies could possibly cause borrelia, or that some people may be without immune response to the infection, or that it could be a different pathogen altogether (that the 'know-it-all' modern scientists are too busy to examine). If you have a healthy imagination, you can get many more options for shooting the test down below "100% reliability".

And it's not revolutionary to do so, since many high-profile cases of private treatment have been in the media. Typically rich people with lots of spare time to see through their doctor's ten-minute survey. Ordinary people, and young people trapped in the socialized economy, do not have the resources to fight back. We live and we die by the system's capability for justice.

onsdag den 4. januar 2017

Against the Nanny State

In 2016, I saw how a big tax-supported TV production ("Snyd eller borrelia") neglected a critique of danish diagnoses. The diagnostic methods for ALS, ME, fibromyalgia, skizophrenia were completely left out of the programme, and instead it ended on a note of closure when a man was told that his tick infection was a fraud and he instead got an ALS diagnosis. The documentary did not examine ALS at all, not the supposed science behind it, not the compared benefits and risks between the man's desired and current treatment versus the 'State Certified' ALS treatment.

I took extensive notes from the show, but the core of it was half a dozen anecdotes, so the question is how necessary it should be to add to its conclusion that 'false positives are a real thing, and you can't blindly trust private laboratories'.

One danish politician (a social democrat) was instant in her willingness to shut down the laboratory in question and perhaps go even further and 'safeguard' all patients by shutting down clinics all over Europe.

My hypothesis is that danish doctors downplay their own cognitive biases. Bias is often spoken of in terms of economic self-interest (for example, "the car dealer sold me a bad car, and he was so biased he walked away laughing"). But the danish welfare doctors are biased against 1) challenging the legal system/bureaucracy 2) expending too much mental and physical energy when they can sit back instead and call the problem simple and solved 3) going against colleagues and/or friends in other departments of the same organizational structures.  

I'm so fucking done with this hypocrisy that I will never again support a move towards more taxation or more welfare. To me, welfare has become a tool to obfuscate the cost/benefits of an economic decision. If you want to obfuscate your uselessness as a politician, you can just throw money at welfare and get an easy pass for 'helping the weak'. If you want to really seem like a hero, add some free education to really lift the poor and the cursed out of their condition. No matter what their local conditions are, just throw a university degree at everyone.

I find it ridiculous that it's been so easy for me to get a psychiatric diagnosis, and meanwhile get attacked and oppressed for not being scientific. If anyone deserves the scientists' attacks and mockery, it would be the perpetrators of diagnosing citizens without proving or testing anything, except for a short talk and some weak correlations with other people who felt the same pain.

At least I have a chain of causal effects to explain my hypothesis. A tick-bite after 24 years of strength and vigor, 1 year after a successful trek along a Norwegian fjord with steep climbs, then after a few days in a forest garden, a sudden collapse into exhaustion and chronic pains.

Psychiatry doesn't explain that. They're deluded.

I read an article that asked the authorities why they still use a limited test. Their argument was that they trust the official report/manual. But why trust a limited test that only even looks for three subspecies of one type of infection. If I walk into a hospital and ask for antibiotics after a tickbite, I expect to be scientifically tested for tick-infections in general, and I certainly don't expect to be denied treatment on the basis of my immune system's response to three subspecies of one bacteria. To test me in such a preposterously limited way is not scientific. Especially given the lack of alternative explanations/hypotheses. And even more so given the actual rash that I presented and that doctors thought to be erythema migrans.

I should be a lot angrier and more hostile than I am. Because, I know the battle is lost. I know the system is built in such a way that it can never be moved by 'the little man', and can never be radically overturned on any scale.

My only hope right now is enough time and energy to closely read through meta-studies and/or investigative journalism and REALLY pick apart old foundations for the persisting recommendations. I want to tear down the wall between me and my right to buy medicine, my right to take a personal risk.

Further reading against the state:

mandag den 19. september 2016

Someone achieved a meeting with the authorities...

As you all know, Danish authorities routinely block treatment when tick-bitten patients test negative. Some patient representatives will meet up with the authorities (Sundhedsstyrelsen) this week, but the setup is not promising. Just one guy from the Serum Institute and three representatives who will defend the State's view that oppression of sick people is a fair deal as long as the exact fooled person cannot be identified among those who tested negative.

My stand is that even if 10% of those tested negative are fooled by a test, when subsequently denied treatment, they are fooled by the authorities. If you know that a few people each year will fall through the net, it's unethical to send those towards psychiatric treatment. By that's just me, not taking my crazy pills.

More info about the meeting:

Bolette Søborg, Sundhedsstyrelsen
Ane Just Ohrt, Sundhedsstyrelsen
Gitte Kronborg, Sundhedsstyrelsen
Kåre Mølbak, Statens Serum Institut
Anette Ulstrup, Patientforeningen Danmark
Aase Høg, Patientforeningen Danmark
Marie Kroun, Patientforeningen Danmark
Alex Holmstedt, Patientforeningen Danmark
Dagsorden til dialogmøde om borrelia og neuroborreliose
1) Velkomst og præsentation. 2) Orientering om baggrunden for afholdelse af dialogmøde, v. Bolette Søborg. 3) Borrelia i Danmark v. Gitte Kronborg og Kåre Mølbak. 4) Borrelia - problemer på området v undertegnede. 5) nye lovende testmetoder v Marie Kroun. 6) en patienthistorie v Alex Holmstedt. 7) diskussion. 8) opsummering."

onsdag den 22. juni 2016

Ny videnskab.dk-artikel omhandler biofilm

Statsmagten er lidt langsom. Samme gælder dens medier. Selvom studiet om biofilm blev publiceret for cirka 6 måneder siden, får det først en omtale på videnskab.dk denne sommer. Flåtsæsonen er i marts og et par måneder frem, så lægernes google-søgninger har nok primært foregået FØR dags dato. Nu kommer der så en lille "obs" til statens læger.


Artiklen er i øvrigt skrevet af Bo Karl Kristensen, samme mand som skrev et par kritiske artikler om private specialisters metoder (behandling efter den i senere år fremadstormende ILADS-opfattelse). Man kan vel udlede af dette, at kun ÉEN dansk journalist hyres til at undersøge dette emne. Denne ene mand kan så spørge en håndful eksperter som alle henviser til hinanden, uden at udfordre hinanden og kæmpe mod dogmerne.

Jeg har i øvrigt en hævelse (cyste) på min hånd, og den er vel enten en spontant opstået seneknude eller, og jeg tillader mig at være fræk her, et symptom på borrelia. Ville det bryde med fysikkens love, hvis knuden er en samling bakterier, som tidligere har forårsaget hævelser i mine fingre, men som sjovt nok nu samler sygeligheden i én klump? Jeg synes det er en oplagt forklaring. Professor Thomas Bjarnsholt kommenterer i artiklen:

»Ud fra denne undersøgelse, og hvad vi ved om bakterier generelt, vil jeg gå vidt som at sige, at jeg vil æde min hat på, at borrelia-bakterier også laver biofilm, hvis de får chancen for det. Og så vil man ikke kunne behandle sig ud af det med tre ugers antibiotika, det er 100 procent sikkert,«
Behov for kritisk analyse af undersøgelsernes præmisser

Det er i øvrigt afgørende vigtigt at forholde sig til de data som ligger til grund for den tankegang Volker Fingerle har bidraget med i følgende uddrag:

>>Hvis det var biofilm, der forårsagede PTLDS, ville længerevarende antibiotikabehandling mindske symptomerne også efter tre uger. Derfor lader det til ikke at være biofilm, som står bag symptomerne, vurderer den tyske professor Volker Fingerle, der er en af de tre, som står bag forskningsgennemgangen.
»En lang række studier viser, at folk, der har haft borreliose og som oplever symptomer efter behandling, ikke får det bedre af antibiotika. Det er sandsynligvis noget helt andet, der forårsager symptomerne, og det skal vi blive klogere på,« siger Volker Fingerle, professor på det tyske statsinstitut Bayerisches Landesamt für Gesundheit und Lebensmittelsicherheit.<<
Bag udtalelsen ligger undersøgelser af en længerevarende antibiotika-behandling og dens effekt på påvist infektion. Men hvor længe varede behandlingen i disse undersøgelser? Jeg opfordrer relevante journalister og læger til at opsøge disse data, og finde den præcise varighed af undersøgelsernes behandling. I den virkelige verden er ILADS-eksperterne uafhængige af en fastsat varighed, og fortsætter behandlingen indtil bedring. I undersøgelsen har man måske stoppet efter et antal ekstra uger, og konkluderet at alt tillagt tid ville være overflødigt, idet undersøgelsens tese var tilstrækkeligt bevist.

Afslutningsvis vil jeg blot bemærke at det er lettere at få en psykiatrisk diagnose, end at få en læges ord for, at flåten kan have overført en anden bakterie end ELISA-testen registrerer. Men tjek lige citatet herunder. 

»Læger har meget lidt opmærksomhed på, hvordan andre mikroorganismer, som findes i flåter, påvirker mennesker. Vi ved heller ikke meget om, hvordan det påvirker os, hvis vi får infektioner fra flere forskellige mikroorganismer på samme tid,« siger Nanna Skaarup Andersen, læge og ph.d.-studerende på Klinisk Center for Vektorbårne Infektioner ved Odense Universitetshospital. 

Psykiatere kan postulere psykisk sygdom udfra en samtale, men en læge kan pure afvise at flåter overfører andre bakterier end de testede underarter af (B. afzeliiB. garinii,B. burgdorferi senso stricto). Dette er en forbrydelse mod borgeres ret til sundhed, jævnfør menneskerettighederne, og efter min mening bør skylden og skammen tilfalde den enkelte læge og dennes svigt overfor stærkt lidende mennesker. Statens indretning har den grundlæggende fejl at individdets risiko-vurderinger overtages af myndigheder. Min krop og mine risici er blevet invaderet aggressivt af en stor nannystat som sikrer stabile lønninger til den kommunikerende samfundsklasse, som med den anden hånd lover retfærdighed og løsninger til skatteyderne. Det hele kan ses som én stor invasion af individers kroppe.

mandag den 4. april 2016

Kan det passe at SSI selv indrømmer ELISAs ubrugelighed?

"Antistoffer i serum: Kun ca. halvdelen af patienter med ubehandlet erythema migrans (1. stadium) har antistoffer når de opsøger en læge. En del af disse patienter forbliver seronegative. "


Altså.. hvis jeg kan være een af dem der forblev seronegative, hvad grundlag har Dansk Selskab For Infektionsmedicin (http://www.infmed.dk) så for at anbefale myndighederne at lukke døren for min sag?

Rettelse: Jeg overså at udsagnet kun gælder tidlig lokal infektion, og ikke omfatter det stadie som mine symptomer passer med (udmattelse, ømme ben og arme, forringet kognition, episoder med brystsmerter og hævede knæ og fingre, etc)

Desuden gad jeg godt vide, hvorfor man kun tester for tre underarter af borrelia (B. afzeliiB. gariniiB. burgdorferi senso stricto) samt hvorfor man aldrig advarede mig om, at udbredelsen af andre patogener i danske flåter blev vist i 2014. Der er angiveligt flere underarter end de tre ("Der findes mange forskellige Borrelia arter, hvoraf de arter, der hyppigst giver anledning til sygdom hos mennesker i Danmark, er B. afzellii, B. garinii, og B. Burgdorferi sensu stricto." - http://www.ssi.dk/service/sygdomsleksikon/b/borrelia%20infektion.aspx

Sagen er lukket, jeg er et overstået kapitel.

mandag den 7. marts 2016

A battle between sloppy journalism and sloppy medicine?


This absurd article from Danmarks Radio casually declares that a man is infected by Borrelia despite four negative ELISA immune tests. It paints a picture that the man is breaking news, leaving out the connection to the international lyme scandal, as well as the important question of how he ended up receiving his diagnosis.

But apparently this man was saved by the system after four negative tests. Now I'm thoroughly confused. I thought the establishment denied this illness. My doctor certainly did so. And usually when journalists seek answers, they ask one of the few 'experts' who are powerful enough to dictate the entire system in Denmark. I have seen several news stories where the only sources were Ram Dessau (clinical associate professor, working group behind the danish guidelines) and Sigurdur Skarphédinsson (of OUH, clinical associate professor).

Will the press now casually start to use random citizens as sources, without declaring that there's more to the story, and an outrageous injustice and deception behind what the system has preached for decades? Now a citizen simply and suddenly 'has borrelia' and we just move on from that? What the f***, are you kidding me? What about me? What about his apparent illness, how can anyone deny him ongoing treatment if the ELISA test is an unreliable test of whether the infection is still present? Then your only imperative as a doctor is to treat for as long as either yourself or the patient believes the infection persists. And this route was what norwegian doctor Rolf Luneng took, and he lost his license by doing this, by acknowleding that the test is basing the treatment on guesswork, just like his personal assessment involves guesswork/risk. Either the risk is with the patient and his doctor, or the risk is with some weird test that no one really trusts. Make your pick. But don't let the journalists confuse you, because apparently they just cite anecdotes carelessly.

The article ignores context or technical details, and gives the useless impression that this one man was an isolated incident, which is a disgraceful disservice to ill people who deserve facts, at the very least.

What tests did the man take?
For what infections?
What will the consequences be for those doctors who failed him and avoided some complex work?

torsdag den 11. februar 2016

Sådan en dag som i dag føler jeg mig så godt som død

Jeg modtog aldrig en eneste dosis antibiotika. Efter næsten 4 år frygter jeg personligt for mit helbred. Men sagen er lukket pga negativ ELISA. Jeg overvejer at læse om menneskerettigheder for syge, men jeg er svag og har ingen kampgejst.

På sådan en svag dag, kan det være et godt våben at dele en historie om en norsk overlæge der bekræfter min historie:

http://www.vg.no/forbruker/helse/helse-og-medisin/overlege-fikk-feil-flaattdiagnose/a/541824/ (fra 2009)