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.
lørdag den 18. januar 2014
mandag den 30. december 2013
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.
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.
søndag den 29. december 2013
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.
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.
mandag den 23. december 2013
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.
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.
søndag den 10. november 2013
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 ;-)
onsdag den 6. november 2013
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.
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.
torsdag den 24. oktober 2013
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.
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.
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