2015 var skuffende

(EN: This is a danish update wherein I share info from the documentary 'Lyme Disease - A Silent Epidemic' broadcasted by Danmarks Radio in summer 2015, danish subtitled version no longer available)

Jeg har pt ikke overskuddet til at omtale hvad der er sket siden sidst. Jeg er skuffet over at den norske retssag om Rolf Luneng ikke har medført noget politisk vilje til at beskytte læger der behandler udfra mistanke om infektion, som det er sket i USA*. Jeg er skuffet over at høre de samme gamle anekdoter brugt i medierne istedet for skarpe argumenter.

Noget vigtigt jeg bør bringe her på bloggen er, at DR sendte en dokumentar i sommeren 2015, som jeg her vil "citere" fra i oplysningens navn. Interessant nok taler alle dens interviewpersoner imod den danske klaringsrapports opfattelse af, at flåtinfektioner bare skal klares med en ELISA-test og lidt tabletter. Dokumentaren kan ellers let gå i glemmebogen, fordi DR ikke prioriterer at arkivere dokumentarisk materiale for offentligheden. At bringe skærmbilleder fra dokumentaren er muligvis en juridisk set kritisabel handling, men jeg ved, at 'fair use' under copyright-loven lægger vægt på om noget har en samfundsnyttig og oplysende funktion.

Flåten - Den moderne vampyr

Sendt på DR sommeren 2015

Udvalgte skærmbilleder til arkivering for offentligheden

 

introduktion om stigning og spredning af infektioner

fransk læge: kun udslæt ved 2/3 af tilfælde

 - Christian Perrone

 

Judith Albertath fik svær træthed, og senere hen store smerter,

synsproblemer og talebesvær efter flere år med en flåtinfektion. 

Hun blev henvist til en psykiater,

og først efter flere år med specialist-besøg

uden nogen idé om flåtinfektion,

efter flere år med brændende smerter 

 

Horowitz bliver beskrevet som en af verdens

fremmeste specialister i flåtinfektioner.

Interview med en patient som beskriver

ekstrem træthed og kognitive problemer,

som nu er udbedret.

 

En anden patient med 

Multisystem-sygdom ifølge Horowitz' questionnaire

 

 

Horowitz: "#1 vektorbårne sygdom"

 

Sat op af en patient i samarbejde med lokalt byråd. 

Senegal, mest udbredte efter malaria,

en fjerdedel ramt, forvekslet med resistent malaria

segment om afrika og trape behandling, mus 

*http://www.lymediseaseassociation.org/index.php/govt/state-legislation

Henvist til pseudo-psykiater (under dække af uddannelseshjælp)

I stedet for at undersøge mig for de mikroorganismer, som kan være I flåter, har vores system nu henvist mig til en såkaldt NLP-behandler, som gemmer sig under betegnelsen 'konsulent', og som er partner med det lokale Jobcenter. NLP er en teknik fra 1980'erne som ifølge Wikipedia er pseudovidenskab, med absolut ingen videnskabelig opbakning. I forhold til borrelia-kontroversen, har NLP ikke engang nogen videnskabelige forsvarere, og teknikken er helt udfaset internationalt. Min Nye "konsulent" har dog været tilknyttet teknikken så sent som I 2010-2011, hvor han var Master Practitioner I NLP-Huset. Men at smide mig ind I sådan et forløb bliver accepteret, måske fordi det coachende felt har lavere videnskabelige standarder end lægevidenskaben? Jeg synes det er ironisk at jeg bliver afvist fra behandling for de tydelige borrelia-symptomer, men bliver tilbudt en anden type behandling som har endnu mindre videnskabeligt belæg.

RETTELSE: Jeg skrev tidligere at manden er psykiater. Det er han ikke. Han har blot gennemført et kursus I psykisk førstehjælp. Han har en tre-årig uddannelse I management samt adskillige forløb I NLP, som ikke giver grundlag for nogen beskyttet titel. Dog har han erfaring med ledelse og kan for så vidt være dygtig til at hjælpe mennesker til at komme I beskæftigelse.

Her får I et citat om NLP:

"In the early 1980s, NLP was advertised as an important advance in psychotherapy and counseling, and attracted some interest in counseling research and clinical psychology. However, as controlled trials failed to show any benefit from NLP and its advocates made increasingly dubious claims, scientific interest in NLP faded.^[90][91] Numerous literature reviews and meta-analyses have failed to show evidence for NLP's assumptions or effectiveness as a therapeutic method.^[92] While some NLP practitioners have argued that the lack of empirical support is due to insufficient research testing NLP,^[93] the consensus scientific opinion is that NLP is pseudoscience^[94] and that attempts to dismiss the research findings based on these arguments "[constitute]s an admission that NLP does not have an evidence base and that NLP practitioners are seeking a post-hoc credibility."^[95] Surveys in the academic community have shown NLP to be widely discredited among scientists.^[96] Among the reasons for considering NLP a pseudoscience are that evidence in favor of it is limited to anecdotes and personal testimony,^[97] that it is not informed by scientific understanding of neuroscience and linguistics,^[98] and that the name "neuro-linguistic programming" uses jargon words to impress readers and obfuscate ideas, whereas NLP itself does not relate any phenomena to neural structures and has nothing in common with linguistics or programming.^[99] In fact, in education, NLP has been used as a key example of pseudoscience.^[100]"
- http://en.wikipedia.org/wiki/Neuro-linguistic_programming#Scientific_criticism

Endvidere skal det understreges at jeg ikke kan undslippe dette forløb:

"
Kommunen kan stoppe din uddannelseshjælp. Det kan den gøre, hvis

• du afviser tilbud om uddannelsesrettede aktiviteter uden rimelig grund og der ikke foreligger særlige forhold, som gør, at du ikke har pligt til at deltage
• du gentagne gange udebliver fra tilbud uden rimelig grund og der ikke foreligger særlige forhold, som gør at du ikke har pligt til at deltage, og kommunen vurderer, at det kan sidestilles med en afvisning af tilbuddet"

8 months update

My symptoms kinda stopped worsening during the last months. But it's hard to say. Just a few days ago, I suddenly got those twitches again, after several months with no noticed twitches. It's hard to grasp and put into words whether my exhaustion has worsened, and whether all the little symptoms are worth analyzing. My stomach is sometimes 'upset' but I'm left wondering whether there's active infection somewhere in there. The politics and science of lyme disease feels similarly chaotic to my 'brain fog' mind. I feel like it's too big for my head to deal with. Danish Radio got back to me and asked me to suggest stories/perspectives for their coverage of 'lyme' but I don't feel my mind can put anything together better than a journalist could. Just like with basic arithmetic, my ability for 'seeing' the subject matter has worsened and my readings cannot be put to proper use by my current bodily state. I think it's the journalist's job to go dig through publications and updates on the disease, not all those who feel mentally burdened and incapable. I'd love to somehow study the science or history of the disease at a university, but I can barely even put such a plan together, though I'm running out of money fast and should have been somewhere in higher education or get a job fast. I might go homeless or kill myself, but that would be unbearably unfair. They're not gonna thwart me so bad, the monopoly, the authorities, they will not get me so far towards oblivion.

I want to share some photos with you in this post. They are from different months and show the few visible manifestations of whatever my body is going through.

The red dots were itchy. The inflamed knee was itchy. I don't get those currently. The scratched hand seemed swollen at the places where the skin would crack.. I could hardly make it into a fist for a while, because there was too much pressure on the skin.

One other symptom I want to share: Sometimes, when I suddenly need to go to the toilet, my legs become sore very suddenly.. it's as if there's suddenly too much 'wrong' for the body to handle, and it excretes it with the stool. I don't know if it's toxicity of some kind or it's bacteria or what it is. But my legs are rarely as sore as in those rare moments, and it disappears as the body excretes it.

Gallery of Visible Symptoms link:
http://imgur.com/a/TOnqM
Excerpts from gallery:

A rant and Danish Radio attention on ticks

Hvorfor bliver læger ikke hængt ud når de bliver afsløret i at praktisere nonsens? Jeg fik sidste år at vide af Anders Koch fra Rigshospitalet at danske flåter ikke bærer co-infektioner, og at han ikke kendte til nogen 'flåtpakke' fra SSI. Nu kan man så læse på DR.dk at rickettsia er ligeså udbredt som borrelia, samt at flåtpakken er bestilt ca 2000 gange de sidste syv år. Hvordan har en ekspert på et centralt sygehus kunnet undgå at høre om flåtpakken? Og hvordan i al-******** har man ignoreret risikoen for co-infektioner? Der må jo for **** have været nogle symptomer? Hvor er journalisternes forargelse over hele denne rådne sag? Politikere bliver hængt ud, læger går fri. Nå, det er efter sigende giftigt at være vred. Jeg må hellere slappe af.

http://www.dr.dk/Nyheder/Regionale/Syd/2014/06/27/090544.htm

http://www.dr.dk/Nyheder/Regionale/Syd/2014/06/27/072706.htm

http://www.dr.dk/nyheder/regionale/syd/2014/06/27/125918.htm

EN: I might not translate this post, but the main takeaways from the articles is that there will be a borrelia research department in Odense and that Rickettsia is as widespread in Denmark as Borrelia according to new research that will be published later this summer. I will hopefully follow up on the research and on the research department. My rant is about how a Danish expert (!) claimed to me that Danish ticks don't have co-infections and that he had never heard of the 'tick-collection' of blood tests that can be ordered from the state serum institute. I am a bit agitated right now because SSI says the test collection has been ordered from them 2000 times over seven years. It means that an expert at one of the biggest hospitals in Denmark has missed the existence of something that is quite central to diagnostics. What an absolute disgrace! It should be all over the media (please contact me Danish media, and I will share my indignation with the people!)

The saddest thing is I am forced to pay that expert because he convinces every patient that they should not look for second opinions. His convinced ineptitude outcompetes any chance at alternative views because everyone respects him so much that they don't spend money elsewhere.

My mother is on 10 days of penicillin, pill form / Min mor tager 10 dages penicillin pt

My mother emailed me the other day, saying that she had found this year's first tick attached. Afterwards she had felt fever-like, and took her temperature to 39 degrees Celcius. She called the telephone doctor who told her to contact our family doctor who then gave her a receipt for 3*10 tablets. She started taking those and said she felt long-term symptoms lesser, mainly fatigue. I asked her to write me a status report, and I just received it. Notice that everything she mentions has persisted from before the recent tick-bite. She has been very exposed to ticks, in the same small area as earlier years. It would make sense if the same rodents or deer are regulars around that area, and that no significant load of new infections have moved into the area.

Here's her description:

"I'm feeling very clear-minded, well rested and fresher then before I took the penicillin. It has scratched a bit at the spot where the little black one sat, but the red spot has gotten smaller. I feel that I can overcome more than before, where I was heavy and tired in my arms for example, I am still a bit sore ther, in both arms, but nothing significant at all, probably because I'm sitting down writing. Now I can turn my head to the left also, without any pain! Prior to taking the penicillin, there were periods where I couldn't turn my head without pain. I also breathe without a feeling of having a stuffy nose. The issue with loose bowels also seems to be over, and I continue to drink A38 (means: yoghurt with added bacillus acidophilus, which we then both currently use), approximately 1-1.5 liters per day. At 10 PM I have to take a penicillin tablet again along with the A38. Then I have taken all three for today."

DA:
Min mor skrev at hun havde årets første flåtbid. Efterfølgende havde hun taget sin temperatur til over 39 grader. Hun fik en recept på ti dages penicillin som hun pt tager. Jeg bad hende skrive om effekten. Bemærk at de aftagende symptomer er fra før det aktuelle flåtbid. Altså kan der være tale om en langvarig, overset infektion, som nu bliver påvirket af antibiotikaen. Det foruroligende er, at hvis dette er tilfældet, så vil symptomerne formentlig vende tilbage efter 'kuren', hvis altså man skæver til tendenserne fra den praktiske erfaring fra klinikker overalt i verden.

"Jeg føler mig meget klar i hovedet, udsovet og udhvilet og mere frisk end før jeg tog penicellin. Det har kløet lidt på det sted hvor den lille sorte sad, men den røde knop er blevet mindre.  Jeg føler jeg kan overkomme mere end før, hvor jeg var tung og træt i bl.a. armene, der er jeg lidt øm endnu i begge arme, men slet ikke noget at tale om, vel fordi jeg sidder og skriver. Nu kan jeg dreje hovedet også til venstre uden det gør spor ondt!  før penicellinen var der perioder hvor jeg slet ikke kunne dreje hovedet uden det gjorde ondt.  Jeg trækker også vejret helt uden nogen følelse af at være ret stoppet i næsen. Og så er hurdlen med tynd mave v. afføring vist også overstået, og jeg fortsætter med at bælle A 38 i mig, sådan ca. 1 -1½ l.  i døgnet.  Kl. 22 skal jeg tage en penicellin tablet igen sammen med A 38.  Så har jeg taget alle tre i dag."