Sunday, October 2, 2011

Healthy artist is a happy artist

(this one will be long, I apologize for that. It's been long coming.)

This post was originally supposed to be about proper ways to sit in front of a computer, about specific exercises you can do to stretch and strenghten your back. That was when I thought I had simple back problems. (most likely I will do such a post in the future)

Last spring I started noticing small health problems. My hearing and sight were getting worse, my skin would tingle and itch or burn in places, sometimes my fingers went numb. Small muscle spasms were getting quite frequent.
And my back would hurt in one spot, not a huge annoyance, but sitting was getting a bit difficult.

So I went to see the doctor - an orthopedist, because I thought I might have had a herniated spine disc.

He didn't think so, because I could bend over easily and except for those neurological symptoms, I felt quite alright.
He did suggest I had blood drawn and tested for Lyme disease.
Knowing only very vaguely what Lyme disease was I agreed and had my blood tested in a couple of weeks, since I had a lot of work and exams to study for.

Somehow, studying was quite difficult this time. I could not concentrate, I'd have to read a slide three times and I'd still forget the contents a few seconds after. I felt like my days went by in a haze, I was constantly tired, I was waking up tired already. I couldn't understand what people say, what the words mean. Reading was difficult and annoying, even seeing, recognizing faces I had to focus on fully.

I attributed this to fatigue, exam stress.
Then, suddenly, I got the test results on the phone - the Lyme test was positive.

I've read up on Lyme a bit. It's a disease caused by bacteriae with a rather extensive list of possible symptoms.

I remembered that I may have had a red patch like the erythrema migrans, which I thought was a large mosquito bite. I wasn't sure when/if I had that though. I also remembered a strange flu-like thing I had last winter, with cold/hot shivers, but which only lasted three days and from which I recovered surprisingly quickly.

The doctor assured me this was treatable with antibiotics, that'd I'd be just fine in three weeks.
Then doubt kicked in.

1) My normal doctor continued sending me to specialists for all kinds of checks and tests, but he wouldn't treat me despite having two positive Borelia tests. (his reason - it's summer and you'd get sunburns from the antibiotics)
2) I read on Lyme some more.

Turns out that most doctors in most countries will tell you this:

"Lyme is easy to treat, especially if we catch it early. 3 weeks of antibiotics and you'll be fine."

Except there are people who don't get fine. And they're hardly a minority. In the few months I've known about being sick, I ran into quite a few people who either had the disease in the past and problems persisted, or contracted it recently and recieved the same 3 week treatment.

I trust doctors. They're trained to do their job. There's science behind what they do.


For strange reasons I can't quite understand, this whole Lyme disease issue is hugely politicized. I won't try to convince you of a global conspiracy against Lyme patients.
One does really sound like a nutter talking about this weird disease he has. He seems fine on the outside, he must be crazy. Even my friends think so, a bit. Maybe my family too.
A very common treatment of chronic Lyme are antidepressives and psychiatric therapy. Does it work? (you can guess)

Why am I writing this? What do I want from you?

Because it took one tiny tick and my life changed considerably. If I didn't research myself, if I didn't trust my logic more than my doctor's training, I might've ended up considerably worse. Because I don't want you to end up like me. 
Please, read up on the symptoms. Remember them. Also remember these important things about Lyme:

1.) It's treatable the best in the early stage. If you find a suspicious bullseye after being bitten by a tick, go to your doctor. Show him the ILADS guidelines, get tested AND treated with high doses of antibiotics immediately after having blood drawn, for at least 4 weeks. Insist on getting treated!

2.) The current tests for Lyme are RUBBISH! The probability of a false positive/negative is incredibly high, but the doctors WON'T TELL YOU. You can easily read up on this, all the info on these ELISA/WB tests is on the internet. Still get tested, but learn what the results mean, don't let the doctor tell you simply "it's positive/negative". Many doctors can't read these tests properly!

3.) Even in the later stage it's possibly treatable, but it's unclear if it's curable completely. You can get better though. The best chance is a combination of antibiotics/antimicrobics. It takes a LONG time.

4.) Testing negative for Lyme does not mean you don't have it. Doctors will tell you it does, but it's simple logic. What the test does - it looks for specific antibodies, which the body's immune system makes to battle the disease. Their logic is - if you don't have antibodies, there are no bacteria. Except Lyme attacks the immune system and often tests are done while you're on antibiotics, which also messes with the IS. There are people who have a proven Lyme infection, with living bacteria found in their bodies, who do not produce the antibodies and test negative. Lyme experts advise to diagnose Lyme from symptoms, not simply base the diagnosis on unreliable tests. Remember that. If you feel like shit, if you joints hurt and swell, if your head hurts constantly, if your heart beats really fast, if your vision is bad, if your skin crawls and tingles all over, if you start losing feeling in your fingers or toes...etc. etc.  You still may have Lyme, even if you test negative.

5.) Antibiotics are your best bet. Read up on herbal treatment, read up on zapper machines. I think herbs may help, but I'd still take them together with antibiotics. Zappers I think are bullshit.

6.) Most importantly - DON'T TAKE LYME LIGHTLY! It's not quite the minor three week annoyance it's made out to be.

Also, watch this documentary. It's very emotional, it's quite subjective. But it should be. It's heartbreaking, but watch it still.

(not sure if the link works, here's the trailer :


So, what about me?

I've been tested positive for Lyme right before last summer. Since then I took the standard three week antibiotic treatment. And while that helped a bit, I still felt almost the same after. I didn't give up and found support in my family. I've been on a combination ATB treatment since then. 

Yes, I've been taking antibiotics for more than two months.
Recently I've been really getting back to normal. Some problems still persist, I discovered a mild case of carpal tunnel syndrome in both my hands, but overall I got much much better.
I still have some time to go on the treatment we planned. We'll see if it returns after I go off the meds. Maybe I'll continue with something else.

Please, don't think me crazy. I simply did what I thought was logical, what made sense. Not what I was told to do.

If you've read past here, I can't believe you did, wow. :D Thank you so much. 
If I got the warning across, that's awesome. 

Next time it'll be either swords, armour, or some art, I promise. :)


  1. So glad you're feeling better, Jan, and I hope it continues for you. As you know, I'm still battling lyme myself with homeopathic kits but I do feel as though I'm making progress (starting the triple lyme-fighting kits in 9 days!). Good on you for making this blog post and for using your brain against current doctor ignorance.

  2. Já byl pozitivní na Borreliózu když jsem byl asi dvanáctiletý, zachytili to až ve druhém stádiu - díky zánětu kolena. Následovaly dva cykly antibiotik (jeden dvojnásobný) a několik let docházení na testy. Jelikož mám hladinu protilátek dlouhodobě nízkou a nezvyšuje se, jsem považovaný za "vyléčeného", až na to, že můžu zapomenout na dárcovství krve a podobné věci. Jo, a není dobré tlačit na lékaře kvůli antibiotikům - není horšího zločinu než dát antibiotika někomu, kdo panikaří s tím, že má erythrema migrans a ukáže se, že ho jen žďobla mochnička. Hlavně nevěřit homeopatii a bylinkám! K antibiotikům brát pouze předepsané doplňky, jsou to neuvěřitelně brutální léky s mnoha kontraindikacemi (alkohol, mléčné výrobky a mnoho jiných).

  3. @Medicinman: to s panikařením jsem tak nemyslel. Jde mi spíš o to, aby lidi věděli, jak EM vypadá, aby dávali bacha když si najdou klíště a mají třeba příznaky, aby se nebáli chtít ty antibiotika. Protože doktoři jsou schopní čekat na testy (které ti stejně do 4-5 týdnů po kusu nic neukážou) a čím dýl čekáš, tím se snižuje šance rychlého vyléčení.
    U mě doktor úplně nesmyslně čekal, i když měl jasně pozitivní testy. Posílal mě na neurologii a nakonec na infekční, kde mi teda ty ATB milostivě napsali.

    Homeopatii taky nevěřím, ale myslím že tam ani není moc šance, že by to uškodilo, pokud zároveň bereš opravdové léky.
    Ono, co jsou předepsané doplňky? Vitamíny?

    Alkohol samozřejmě nepít, to je jasné. Ty mléčné výrobky se zakazují myslím u tetracyklinů (Doxy atd.), protože vápník v nich váže ATB, nebo tak něco, takže se zhoršuje vstřebávání.

    Co se týče brutality ATB, nějak to nepozoruju. Možná beru na svou váhu a velikost menší dávky (tzn. normální :D), ale po celkem dlouhodobém užívání se mi ani skoro nezhoršilo trávení. (samozřejmě beru probiotika, aby se to vyvážilo)
    Asi záleží na konkrétním člověku, jak to s ním zamává.