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.

Today's trouble

Three hours ago, I bit my tongue. It caused a lot of bleeding. Blood and snot got mixed up in my mouth and as a consequence, there has been a direct route for bacteria to travel into the wound on my tongue. It would be interesting if something unfamiliar happens in the coming days, so I just wanted to mention it here. So if I stop writing this blog, I'm probably dead from the newly spread infection ;-)

Sharp heart pain (and a conversation with my mother)

I was doing the dishes five minutes ago and my heart suddenly had a sharp pain, like something that would happen if you've ran a marathon.

As I sit at the computer, it persists, although not in the same degree.

It also happened this friday while I was asleep. I woke up with the pains and couldn't breathe fully in or fully out. I could only take small breaths to avoid the sharp pains.

I called the "24/7-telephone-doctor" and got an open appointment at the hospital, but I didn't go there. Now I might go today since it returned and I have some data on what happened after the first "strike" (nothing really happened).

edit: now 30 minutes later, it is still there. I'm sitting on my chair and it has intensified. I'm a little bit concerned.

edit2: Now, two hours later, the pain is gone. While I was in pain, I googled 'lyme sharp heart pain' and stumbled on an unrelated story about a woman who killed herself, told by her brother. The story made me call my mother, a bit frustrated that I haven't seen the same kind of support from her. It evovled into a long (49min) conversation about state-approved treatment versus private treatment. She is against private treatment for political/ideological reasons. I called her lack of support "ethically undefendable" out of frustration for a start, but we had a nice conversation where she said she supports whatever I do. She said she would like to accompany me on any potential trips for treatment abroad. I came to think of a documentary about danish hospitals, where a journalist took a 'bacteria detector' into hospital wards and discovered that most hospital beds and critical surfaces were full of bacteria. The staff commented "but it looks clean". He commented that it's funny to look for bacteria when you can't see them. That's how I feel about the diagnosis for lyme. Doctors just follow their duty, content to do "enough" for their paycheck, enough for the guidelines to have been followed. When they should really be their own critics and say: "I can't see bacteria, so they're not there. But what if there are bacteria I can't see?"..... "I can't see bacteria in your borrelia test, so they're not there. But what if there are bacteria it can't see?".. I know the analogy is simplistic and stupid, but it's the same attitude in both cases. Uncertainty should be acknowledged. Anyway, the real heavy reason for this edit is that my mother said she also has twitches every night. She has spent much more time than I in that garden. She has had more ticks than I. Now it's an emotionally difficult dilemma for me, since I'm the only one who understands the serious implications. I'm the only one who would be able to stand up against the dogmas and challenge them for her. She thinks she's doing fine though, and I pretty much believe her when she says she'll be alright. But still, it feels like I should be wary.... no one else can have that responsibility.

Oh except the doctors, but they're not taking it.

A tremor!

Fifteen minutes after waking up today, I had a light tremor in my right elbow.

I know that tremors are a common lyme symptom.

Wonder how slowly they develop in degree and frequency

Main symptoms remain soreness in legs and occasional twitches and ear ticks/pumping

Oh and yesterday I noticed a pain in a finger on my right hand, the same kind of pain that I've had in my legs.

Return of symptoms

After some peaceful days, my symptoms returned last night.

* The clicking in my right ear has sped up so it clicks in double speed.
* The sound of blood barely pumping through 'the arterie by my right ear' is back and lasted most of the night

* The twitches have returned, still rare and spread around the body so I'm barely annoyed.
* Energy loss to a point where I feel like I've barely slept (which may owe itself to the fact that I woke up many times during the sleep).
* Sore legs for no reason, intensified along with the other symptoms while lying in bed.
* Pain in my right arm, not from the bones but from the joints

As always, these symptoms peak while I (try to) sleep. Right as I write this blog post, I don't have any annoyances from my body at all. Which is great. I must remember to remain thankful.

Oh and the bloody mucus only happened one morning while I visited my biological father. So it didn't technically return. 

Return of the bloody mucus / De blodige slimhinder vender tilbage

Two days ago, my biological father drove me to his home to get some help on cosmetic improvements of his bathroom. He is a smoker and recently used turpentine on a wall, so in some rooms, the air was not very healthy.

Thursday night, we went to a chinese restaurant where I ate things I considered moderately safe. Duck, chicken, rice, vegetables, soy sauce, sushi, fried shrimps.

Friday I had some bread (containing sugar, gluten and yeast) for the first time since the last visit in august. For dinner we had chicken and potatoes and brocolli and tomato and a few other vegetables, fried in animal fat.

Thursday and friday passed by pretty harmlessly, but today, saturday, I woke up with blood in my spit!

If I go back and examine the other time this happened, I'm sure it was after the other visit to his place, in august. Pretty damning pattern. Something there makes this happen.

I confronted him about his insistence to not let me buy myself quinoa for breakfast. He remained steadfast that I should test the consequences by 'doing what I can get away with'. I really don't share this philosophy, and I believe in protecting myself by observing consequences from other people. There are thousands who have been helped by cutting gluten, sugar, dairy from their diet. And the reasoning behind their betterment looks sane to me. We need to respect the body as a complex system. It's an environment in balance, just like the external environment. We can protect it and be careful, or we can test its limits. For decades, modernity has tested the external environment's limits by the "what we can get away with" method. It has put us in a very vulnerable position. My biological father puts himself on the shoulders of this line of thinking. I don't even have to attack him or judge him.

He himself attacks me from a position that is evidently harmful if not isolated and excluded.

First half of october

The first half of october has been alright, no scary symptoms, only the ones I'm familiar with (twitches in the foot and around the body, soreness).

But that said, I started to experience heart pains tonight (six hours ago), and they went on for twenty minutes, then came back a couple of hours later, so I considered calling the 24/7 doctor, but I didn't because I expect ZERO of them.

I just read that the Norwegian lyme clinic has been shut down. I will read into it, but seemingly it's a very sad story for patients.

Now, the only clinics, relatively close to me, are in Germany. One of them is in Augsburg, and it seems to be the most trusted place in Western Europe. The other one is a doctor Klemann in the city of Pforsheim. I know nothing about the latter. Oh, and a third one mentioned was RehaCenter Gyhum operating south of Hamburg. 

I got these references from a community group online. God bless compassionate people.

Just a quick update looking back at september

I'm doing alright.

Last night, I had those twitches in my right foot's toes.

While walking through the city, I felt a tickling in my entire left leg, as if it was about to go to sleep/numb.

I walked by some very cheery street jazz musicians and forgot about it and carried on with the day.

I'm surprised nothing dramatic happened following the bloody spit and the headache and tooth ache.

Now 17 months after the tick bite, I still basically feel like I did just months after the bite, except for the times where something happens with my body and it goes away.

Oh, and except for my terrible memory/cognition!

Nerve disturbtion in right jaw

EN:

Today, I had twenty or so twitches in my right jaw. This might be significant because I haven't had any twitches in the head before. Or rather, I had it one time, the night before the whole neurological twitching began (december 2012).

If additional unusual symptoms follow during the next 24 hours, I will let you know.

I highly suspect something is going on around my head. Something getting closer to the centre of my mind. Sure this may sound paranoid as hell, but right now, it just seems like the pattern leads to something very grave with my mind. (twitches started in my right cheek back then, then next morning were very strong in my right toes. Then it all began. Now they're back in my head-area, and combined with the nose disturbance-blood-thing and the tongue thing and the headaches, it seems that something is physically closing in on my brain)

MP3: Optagelse fra ELISA-test-samtale

LINK/MP3: Optagelse af opfølgende samtale om anden spinalvæske-test taget ca 15 måneder efter flåtbid

DA:

Som lovet offentliggør jeg her den samtale om spinalvæske-test, jeg havde med en læge, her for en måneds tid siden. Læg mærke til at lægen indrømmer at testen ikke er sikker. Han fortsætter med "... men du har ikke borrelia!"

Jeg har sidenhen ringet til ham og oplyst om det blodige spyt, om tandsmerterne, om hovedpinen. Han sagde at tegnet på infektion er feber (?), at jeg ikke har infektion hvis jeg ikke har feber. Jeg fik dog tilbudt en undersøgelse/tid hos ham, hvis jeg ringer til ham en dag og ønsker det.

EN:

As promised, I here publish the recording of a conversation that followed up on my second spinal tap / ELISA test. It's in Danish so you won't find it useful. But if you're interested in the lyme controversy, you can copy it to your computer and help preserve it for the future.

The conversation doesn't really go anywhere. He calls the private clinics frauds, and he insists that I don't have lyme, despite also admitting that the test isn't certain at all.

I called him later, a couple of days ago, because I wanted him to know about the blood in my spit, and the headaches, and the toothaches, and the black spots on my tongue. He offered me a new consultation but still insisted that there's no infection.

His reasoning went like this: "If you had an infection, you would have fever."

And also that the bloody mucus spit - and toothaches - didn't necessarily have anything to do with infection. He called that 'popular opinion'.

Blood gets blacker

DA:
Okay, blodet i spyttet er fortsat blevet mørkere og mørkere.

Det er nu 'reduceret' eller intensiveret til sorte klatter. Jeg vågnede også i dag med en ualmindelig ømhed i benene, samt øre-klik og nervetrækninger overalt.

I dag SKAL jeg bare ringe til en læge, en privatlæge, en homøopat. Det her er vanvid.


EN:

The blood went blacker over the last couple of days. Now it's intensified to think black drops that come out with some of my spit.

In addition, I feel like the general symptoms have intensified. It makes me think that there actually is a bacterial battle going on in my nose, and in the brain barrier, and that my defenses are crumbling while symptoms alert me.

Fear

I fear that the new signs of infection in the head/brain will result in a sudden crash of my brain's functioning sometime  during the next couple of weeks. I'll keep you updated. The 'telephone doctor' gave me the option to check into the local hospital two days ago, but I haven't used the opportunity.. yet. And now the appointment might have be cancelled. I want to go, but it's cold outside at night, and I sleep during the day. I'm kind of apathetic since I expect them to shrug and call me 'a healthy young man'.

Vågnede med stærk hovedpine, blod i spyttet samme døgn, sort plet på tungen

Jeg stod og spyttede blod op på badeværelset for et halvt døgn siden.

Ringede til vagtlægen da jeg også fandt en sort plet på min tunge.

Det ligner en hjernehindebetændelse, ovenpå samme døgns tidligere hovedpine og stærke nakkesmerter.

Jeg skal til Bispebjerg nu her lørdag aften.

For at dokumentere/opsamle vil jeg gerne dele en oversigt med jer, som jeg også vil tage med til Bispebjergs vagtlæge.

ny udvikling:
30/8 tandsmerter i højre overmund, mest intensivt ved sengetid, endda dunkende
6/9 kl ca 12 vågnede efter tre timers søvn med stærk hovedpine og nakkesmerter
7/9 kl ca 05 før sengetid, altså samme døgn, spytte blod, sort plet på tungen
      kl ca 10 blod ud af næsen
      kl 22:15 min højre hånd ryster
8/9 ???? fortsat intensiveret? først tandsmerter intensiveret, så slimhindeangreb intensiveret, så?????

sort plet på tungen, blod fra slimhinder, stærk hovedpine og nakkesmerter


alle symptomer skrevet op:
sommer 2012: Sommerfeber med nakkestivhed og kvalme, tunghed, sensommer 2012: erythma migrans, december 2012: nervetrækninger i højre fod, vinter 2013: prikken overalt i nerver, hjerterytmeforstyrrelser, sammentrukket følelse ved hjertet, forår 2013: ømhed i ben, kortvarig døvhed, flydere på øjnene, smerter i siden, smerter i benet, smerter i hånden, ømhed i arme, skarp kortvarig 'stik'smerte i baghovedet som om noget eksploderede, svigtende ordforråd, sommer 2013: vågnet med smerter i hele 'forskrakt' højre ben, besvær med simple udregninger på trods af tidligere høj IQ, sensommer 2013: vågnet med begge arme sovende+lammede, tandsmerte i højre øvre bagerste tand, vågnede med stærk hovedpine og nakkesmerter, samme døgn: spytte blod, sort plet på tungen, højre hånd ryster


Om slimhinderne og bakterieangreb og tandproblemer:
"mange bakteriearter, der kan klippe vores immunoglobulin A1 antistoffer midt over, og der- med undgå at blive “opdaget” af effektorcellerne. Flere af disse kan give mund- og tandsygdomme såsom tandbylder og paradentose.
Disse bakterier udskiller et særligt enzym, som er i stand til at ødelægge immunglobulin A1. Enzymet kan simpelthen klippe antistofmolekylet i to dele, så det mister evnen til at signalere til effektorcellerne. Bakterierne har oven i købet den fordel, at de halve antistoffer stadig hægter sig på, så bakterierne dækkes med de uvirksomme antistof-dele og derfor ikke virker fremmede for immunforsvaret.
Blandt de bakterier, der udskiller enzymet, udover de harmløse af normalfloraens bakterier i mundhulen, de tre farlige bakterier, der giver meningitis; Neisseria meningitidis (også kaldet meningokokker), Streptococcus pneumoniae (også kaldet pneumokokker) og Haemophilus influenzae. Disse tre bakteriearter kan alle via de øvre luftveje og slimhinder, gå over i blodbanen og derfra videre til hjernen og forårsage meningitis. Den såkaldte Hib-vaccine forhindrer infektion med Haemophilus influenzae, en vaccine mod pneumokokker er ved at blive indført, mens det stadig ikke er muligt at vaccinere imod de hyppigste former af meningokokkerne." - cand. scient. Lotte Maxild Mortensen


videnskab.dk
"Ifølge afdelingslæge ved Statens Serum Institut, Palle Valentiner-Branth, spreder den alvorligste form for meningitis sig i epidemier hvert år, når det er tørtid i det såkaldte meningitisbælte i Afrika syd for Sahara. En teori lyder, at årsagen kan være, at når slimhinderne tørrer ud, så har den dødsensfarlige meningokokbakterie nemmere ved at trænge ind i kroppen."

Headache and blood from my head coming out in my spit

DA:
I dag vågnede jeg pludselig op med hovedpine som tog til og bevægede sig fra nakken og op bag ørerne. Den var voldsom, og jeg lå i sengen og sagde "av", "aaav", "aaaaaaav".

Cirka trekvart døgn efter havde jeg pludselig blod i spyttet. Det kommer oppe fra slimhinderne af, og kommer ikke ud gennem næsen. Jeg ringede til lægevagten og tilføjede at jeg også har en sort plet på tungen som dukkede op i løbet af samme time som blodet. Han sagde det ikke lød så alvorligt, men at jeg kan komme på Bispebjerg når de åbner. Jeg må fastholde at alt tyder på en flåt-infektion.

en kort opdatering, september, ca 17 måneder efter flåtbid

Jeg var til samtalen og optog den i øvrigt som lydfil. Lyme disease (langvarig borrelia) blev kaldt noget svindel af lægen. Jeg vil gerne lægge lydfilen op, og regner med at gøre det en dag snart. Nu er der gået nogle uger, og jeg har mistet modet en lille smule, fordi symptomerne stadig minder mig om min sygelighed.

Eksempler på påmindelser/forskrækkelser:

Jeg har haft tandsmerter siden 31/8. Hver nat, hvor jeg i øvrigt er vågen, bliver min højre overmund pludselig smertefuld. Jeg har læst på engelsksprogede foraer at det er ret udbredt blandt lyme-patienter. Tandsmerterne har fået mig til at børste grundigere tænder, og være ekstra påpasselig med maden, men jeg ved at disse adfærds-ændringer ikke i sig selv kan løse situationen.

Jeg vågnede i øvrigt med lamme/sovende arme natten til i går (4/9 2013). De var begge lamme og sovende, og det blev ved skræmmende længe. Den ene kom til sig selv og jeg kunne så daske lidt på den anden, selvom hånden forblev følelsesløs og lammet ret længe. Jeg havde ikke ligget på armene og det skete ikke for én arm uafhængigt af den anden. Deraf udleder jeg at der kan være en sammenhæng med neurologisk forstyrrelse. Jeg må prøve at tage det roligt, for jeg kan ikke se hvor jeg skulle søge hjælp udover langvarig og dyr antibiotika.

Anden lumbalpunktur, Rigshospitalet

Mandag d. 12 august (cirka 15 måneder efter flåtbiddet) havde jeg en aftale på rigshospitalets infektionsmedicinske afdeling. Det er en seperat bygning som ligger ret hyggeligt ud til fælledparken, lidt på afstand af selve hospitalet. Jeg fik et godt indtryk af personalet, selvom jeg næsten kun så kvindelige ansatte (er selv mand og har ikke nogen præferencer, men hvad hvis nogen havde?). Afdelingen virkede organiseret og imødekommende, og mere effektiv end mine korte møder med Bispebjerg hospital (akutafdeling, neurologisk afdeling). Jeg måtte presse på, i samtale med lægen, for overhovedet at få en 2. lumbalpunktur. Mit argument var at jeg har læst i Ugeskrift for læger at de første to uger efter start af neurologiske symptomer indebærer en større usikkerhed i resultatet. Denne usikkerhed påpegede jeg, samt udtrykte ønsket om at den blev klart kommunikeret til mennesker med symptomer og en negativ test.

Men det lykkedes altså at blive testet for anden gang (første gang var ca. 12. december, altså ni måneder inden) mandag d. 12. Det forløb stille og roligt. Jeg krummede mig sammen på hospitalssengen og fik en nål stukket ind i rygmarven. Faktisk gjorde det ikke ondt, og jeg undrede mig over at jeg havde frygtet processen.

En blodprøve blev også taget. Jeg fik en banan og masser af vand, og lå til hvile i en lille time efterfølgende.

Så gik der nogle dage inden jeg fik et opkald fra en læge, som fortalte at prøverne var negative (både blod og spinalvæske), samt at der dog var et lidt lavt antal af hvide blodlegemer.

Sagen om de hvide blodlegemer skal jeg undersøge de næste par dage. Det viser jo at mit immunforsvar er kompromitteret i nogen grad. Jeg skal derfor undersøge om spinalprøven skal fange alle typer infektioner, eller måske kun dén mest udbredte underart af borrelia. Hvis prøven ikke fanger alle underarter, eller alle co-infektioner, og mit immunforsvar viser at det for tiden kæmper mod et stærkt angreb, så er det oplagt at arbejde med teorien om co-infektioner, eller evt. en uforventet underart af borrelia.

Jeg tager endnu en blodprøve i morgen, og har en samtale med en læge om fire dage.

Indtil da er mit mål at undersøge forekomsten af evt andre bakterier i sjællandske flåter, samt undersøge præcis hvad der blev, og ikke blev, afkræftet ved spinalvæskeprøven.

Indvielse

DK: Måske er blog-formatet ikke optimalt til en grundig undersøgelse af en alvorlig situation. Men jeg tror samtidig at det gør mine skriverier let tilgængelige. Hvis dette var et skib, ville jeg knuse en champagneflaske mod skroget. Jeg vil nøjes med at skrive "klir".

EN: Perhaps the blog format is not optimal for a thorough investigation of a serious condition. But I think it makes my writings easily accessible. If this was a ship, I'd crush a champagne bottle against it. I will confine with writing "smash".