The Establishment, The Understandable and The Inexcusable

The Understandable:

Long-term antibiotics have not sufficiently been documented for effectiveness in double-blind studies. Thus, such treatment is considered experimental and risky.

The Inexcusable:

The ELISA test is less than 80% precise by a fair margin. Despite the certain mass of people who will be falsely tested negative, there are no procedures for picking up those in the health-care system. They officially have no infection, but there's a statistical, mathematical certainty that at least some still have the infection. In Denmark, about 50.000 people get infected yearly. If a similar number take the ELISA test, it's fair to predict at least 1000 false negatives yearly. In that order of magnitude, people will be left to their own families for support and might never take responsibility for the infection (anti-inflammatory diet, rest, stress-free life) because they are told they are now 'safe', after the negative result. They are the ones left to true experiment and risk.

I respect experts a lot. They do their best. But uncertainty must be recognized, unless we disregard the consequences for those caught on the wrong side of results.

Ear Doctor's perspective

Today I went to check my hearing and ears. The doctor removed some black, hardened ear wax from really far inside my ear. I told him about hearing my heartbeat while I had the test headphones on, the gushing sound was louder than the programmed beeps. I told him that I some nights have felt my blood pressure in my fingers and toes.

He was surprised the wax could be so close to my ear drum, and that it was so hardened. His answer to the blood pressure issue was to get it checked and that he also "sometimes felt it in his thumb, if he pressed it against a table". In response to the heartbeat-sounds, he answered that I should pay less attention, that it could feel intensified by attention alone.

I don't buy that bullshit by the way. But he's hurried, and he has no data on the wider system that my body is. His attention was on the noise, not mine.

For the record, his tools caused bleeding in my right ear. It would be ironic if that causes an infection. I highly doubt it was sterile. Not expecting it, but I record it since I want to be able to shove people's incompetence back into their face if it has consequences for me. Remember to always document things. Any possible cause of something, document it, and you will be the smart one. I took a picture of some bloody paper as I returned home. 

Symptom update

Jeg vågnede tre-fire gange i nat fordi lyden af pumpende blod i mit højre øre var høj. Under sådan et 'anfald' kan man med en hånd tydeligt mærke blodet pumpe bag øret, nede mod nakken, og det er ubehageligt at tænke om det belaster årerne, for det lyder/mærkes som en slags prop. Især når man prøver at sove.

Oveni købet kom en temmelig kraftig nerveforstyrrelse til, i min venstre fods tæer. Dette er specielt af tre grunde:

1) Jeg har kun haft så markant forstyrrelse i tæer et par gange siden biddet i 2012. Det plejer at være små "spændinger", men her føltes det som at få stød.

2) Jeg plejer at blive "forstyrret" i højre side af kroppen, men her var det altså venstre fod.

3) I går spiste jeg et produkt indeholdende rørsukker, der var lige lovligt sødt, og jeg forventede udfra tidligere erfaringer, at det hurtige sukker kunne give problemer.

Jeg skifter døgnrytme jævnligt for tiden, for jeg kan ikke falde i søvn pga pumpelydene, og jeg er helt smadret uden 10 timers søvn. Så døgnet bevæger sig to timer fremad på nogle dage.

Nåmen, derudover har jeg haft lidt ømhed i benene. Og en forstyrrelse der kunne bekymre mig meget (hvis ikke jeg gjorde alt for at slappe af): Uresponsive hals-muskler, der sætter sig fast i spændt tilstand i nogle sekunder, når jeg kigger skarpt ned mod højre side. Det er kun sket et par gange, men jeg betragter det som en 'fremadskriden' i forhold til fascikulationer/muskelryk. 

Det har været ubeskriveligt fedt at være uden symptomer i en periode på ca 40 dage (fra slutningen af januar til starten af marts). Jeg følte mig rask.

EN: Leg pain gone DA: Bensmerter er væk

EN: Since yesterday (17/1) my leg pains disappeared. It is SUPER nice. I now have twitches randomly around my body, and I woke last night from twitches in my toes. Also, a few black spots reappeared on my vision, after I carefully checked for them once every week for a few months and there were none.

DA: Siden i går har mine bensmerter været væk. Det er MEGA rart. Jeg har nu muskelryk rundt omkring i kroppen, og i nat vågnede jeg ved trækninger i mine tæer. Pletter på synet er vendt tilbage, efter jeg i et par måneder ca ugentligt har tjekket at de var væk.

Stinging tears (svidende tårer)

EN:

This is a strange one. Today, I cried to a Youtube clip for 30 seconds and my eyes started to burn/sting and went red. It has never happened to me before. It intensified for up to a minute until I ran to the bathroom to wash my face. Then it stopped. I then went back to the computer and googled "eyes pain stinging" with no mention of "lyme" in the query. One of the top results was a thread from MD Junction (message board) about lyme disease and this exact phenomenon! See for yourself: http://www.mdjunction.com/forums/lyme-disease-support-forums/general-support/1125124-stinging-tears

I'm infinitely better at investigating my disease than the local doctors are.

DA:

I dag græd jeg til en Youtube-video. Efter 30 sekunder begyndte mine øjne at svide/brænde. Det intensiveredes i ca 10 sekunder inden jeg løb til badeværelset og skyllede mit ansigt i vand og sæbe. Så stoppede det. Jeg tænkte på at der måtte være noget 'irriterende' i 'tårevæsken' som generede øjnene, og oplagt kunne det være bakterier. Jeg gik tilbage til computeren og søgte på "eyes pain stinging" uden at nævne infektioner eller flåter eller borrelia. På utrolig vis var et af topresultaterne fra et borrelia-forum hvor borrelia-ramte har nøjagtigt samme mærkværdighed.

Jeg er stadig ikke diagnosticeret af de københavnske læger, og mener efterhånden at jeg er bedre til at diagnosticere denne sygdom end de er.

The shivers only lasted a couple of days

Now I'm back in a more familiar condition - muscle twitches and soreness.

I had a brief migraine behind my left ear yesterday. It scared me since I didn't know how long it would last, but it only lasted a dozen minutes. Nothing too bad.

A strange thing I increasingly take notice of, is that my digestion is 'unreliable'. When I have a full stomach, I can suddenly get an urge to go to the toilet, and the 'latest' part of the stool is much more fluid than the rest. This suggests that there is some irritation that only happens when I've had a full stomach for a while. I have no flipping clue as to why it's like that, but my toilet gets clogged all of the time because my feces is just one big abhorrent, soggy piece of shit. Sorry about this. I will rarely speak of toilet things on this blog, but I need this scribbled down for further reference. It has gone on for weeks now, unrelated to what I eat. It just should not happen to a guy in his mid-twenties. As with the muscle twitches and all the other freaky stuff.

Again, a google search on 'lyme digestion' or 'lyme and crohns disease' only feed my suspicion that it's caused by the wrong bacteria causing trouble in the gastrointestinal tract, possibly helped by the absence of the weakened immune system. If my body is fighting something else, it just might have too much trouble handling relatively normal threats like that.

Shivers

It's been a while. I have had lots of days where the symptoms didn't distract from anything. I barely notice the soreness in my legs and the clutched feeling of my heart. But today I noticed that I shivered several times while playing computer. I thought it was the 'touching story', but the story wasn't touching at all, so it felt odd and I wondered if the temperature was low. But my head felt normal temperature. It was only my arms, legs, body (ironically the clothed parts!) that got 'touched'. And it just went on and on for hours, intermittently. I got the suspicion that it could be the same 'failure' in my nervous system as had caused all prior symptoms, and since my best explanation is still borreliosis (or lyme), I googled 'shivers lyme'.

I hate to say the result didn't surprise me at all. Several pages of results linking to forum threads where people come together with the same symptom as me. It seems to be related to tremblings, especially night-time tremblings, so I will anticipate the coming days to see how I feel. But really, I'm more amazed every week by how crazy this freaking infection is. I still do nothing to combat it, except meditate on peace and harmony and tolerance, plus my restricted but enjoyable diet (as soon as you get off sugar, most vegetables and spices satisfy tastebuds fine).

Oh, I woke up with stomach pains this morning followed hours later by the shivers! Important detail since one thread specifically mentioned this connection with a long history of simultaneous occurrences.

Apart from that, I don't think there's anything new to report.