En osannut diagnosoida poikani Borrelioosia

Borrelioosiin sairastuneiden henkilökohtaisia kokemuksia taudista ja sen hoidosta.

Valvojat: Jatta1001, Borrelioosiyhdistys, Waltari, Bb

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Liittynyt: Ke Tammi 21, 2009 14:16

En osannut diagnosoida poikani Borrelioosia

Viesti Kirjoittaja soijuv » Pe Huhti 22, 2011 20:31

Keskustelin tutkijafoorumiimme juuri liittyneen uuden jäsenen, amerikkalaisen lääkärin, kanssa ja hän antoi luvan julkaista poikansa Gregin tarinan, nimineen, sivuillamme. Alussa hän kertoo kaksi psykiatrisiksi tapauksiksi luokiteltua tapausta joissa oireiden syyksi paljastui tulehdus ja toisessa aivohematooma.

"En osannut diagnosoida oman poikani Borrelioosia.

Poikani Greg on nyt 20-vuotias. Kolmevuotiaana hänellä diagnosoitiin autismi. Hän alkoi ahdistua 8-vuotiaana ja 10-vuotiaana hän sai hoitoa masennukseen ja ahdistukseen (Zoloft). 14-vuotiaana hän sai jo kuutta eri lääkettä.

Lääkityksestä huolimatta poikani terveys on heikentynyt viimeisten kolmen vuoden aikana merkittävästi. Hänellä on keskittymisvaikeuksia, tasapaino-ongelia ja kaatuilua, paniikkikohtauksia, masennusta, fatiikkia, ja hän eksyy tutuissakin ympäristöissä. Hän ei kykene enää ajamaan autoa eikä käymään koulua.

Muutama kuukausi sitten ajattelin, että jokin on viemässä minulta lastani, aivan kuin jokin eliö söisi poikani persoonallisuutta. Mietin olivatko lääkkeet ja niiden myrkyllisyys syynä pahneviin oireisiin, mutta veriarvot olivat normaalit.

Muutama viikko sitten ystävälläni diagnosoitiin Borrelioosi. Hän kertoi oireikseen mm. sen ettei osannut ajaa tuttuun kauppaan. Silloin havahduin. Olin kuullut poikani sanovan aivan samaa. Pyysin poikani psykiatria tekemään borrelioositestin vaikka en tiennyt minkälaisesta testistä oli kyse. ELISA-testi oli positiivinen. Myös immunoblottaus, Western blot, oli positiivinen (IgG 18, 23, 30, 39, 41, 58, ja 93 kDa.) Emme tiedä milloin Greg on saanut tartunnan. Tontillamme on kasvimaa ja lähellä metsikkö. Pihallamme käy peuroja aika ajoin. Greg viihtyy metsässä. Joten kuka tietää milloin tartunta on tapahtunut.

Testituloksen jälkeen olen käyttänyt aikani etsien tietoa Borrelioosista. Aiemmat tietoni siitä olivat vähäiset. Olen lukenut kaiken mahdollisen tiedon taudista. Äitinä olen kauhuissani, kansalaisena haluan marssia Washingtoniin ja lääkärinä olen innoissani. Muistan opiskeluajoiltani yhden potilastapauksen jossa henkilöllä oli akuutti silmän värikalvontulehdus ja munuaisten vakava toimintahäiriö. Hänelle ei ollut löydetty diagnoosia. Haastattelin potilasta kaksi tuntia. Kysyin esim. milloin hän oli viimeksi tuntenut itsensä terveeksi. Silmä-ja munuaislääkäri eivät tienneet mikä potilasta vaivasi. Prosessi oli kiehtova koska emme tienneet mikä oireet aiheutti.

En tunne Borrelioosia vielä riittävästi mutta tämän foorumin jäsenet selvästi tuntevat. Toivon oppivani teiltä ja saavani poikani parempaan kuntoon. Toivon myös voivani auttaa muita Borrelioosia sairastavia."


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I'm a practicing physician in New York State. Most of my career has been in emergency psychiatry. I love medicine. My favorite thing about my work is diagnosing medical illness that my non-psychiatric colleagues have missed.

My two favorite such anecdotes: being called to admit to psych a 54-year-old woman with no prior psychiatric history and presenting with psychosis. Knowing that most "functional" psychotic illnesses first manifest early in life, I consider the likelihood that there is an underlying disease process causing this psychosis. The emergency physician walks me to the patient's cubicle, pulls aside the curtain, and before he can say another word, I remark, "Did you know notice the classic lupus malar rash?" She looks like someone painted rough patches of red paint across her cheeks. We run the tests, and sure enough, her ANA comes back supporting the diagnosis of LPE and she is admitted to medicine for treatment of lupus cerebritis. He didn't even see the rash because she was a "psych patient."

Another:

I get called to see a Jane Doe. A 34 year old disheveled, malodorous woman who was found in a public park, naked in a fountain, urinating into her hands and drinking the urine. (You can't make this stuff up!) Since she raving and not making any sense, I get called to admit her to psych. I read the chart and notice the nurses have documented that she has vomited once. I also notice, that despite her agitation, her heart rate is only 74----I'd expect it to be higher. I suggest a brain MRI, thinking increased intracranial pressure. They medicate her, scan her, and find the subdural hematoma.

I write this, not with pride, but with shame, because I missed my own son's diagnosis of TBD.

My beautiful son, Greg is twenty years old. At 3 he was diagnosed with high-functioning autism. At 8 he developed anxiety symptoms and at 10 he was treated for depression and anxiety with Zoloft by a child and adolescent psychiatrist. At 14, he developed episodic periods of agitation and depression, and because of a history of bipolar II disorder in his father's family, was treated with Tegretol, Lamictal, Klonopin, lithium, and Seroquel in addition to the Zoloft.

Despite all these medications, over the past 3 years, my son has deteriorated significantly. He has had increasing confusion, difficulty concentrating, panic attacks, episodic agitation, depression, fatigue, loss of ability to drive, getting lost walking in our familiar neighborhood. His balance is off, and he falls down a lot. He has had to stop driving and dropped out of college, where he had been a 3.8 GPA student.


A few months ago, I remember thinking, "Something is taking my child away from me", as in the sense of something organic eating away at his personality. I thought he might be toxic on his medications, but his blood levels were always therapeutic. I thought his unrelenting psychiatric symptoms were just eroding his brain, like some very ill schizophrenic patients can look after years of illness.


A few weeks ago a friend of mine was diagnosed with Lyme Disease. She told me,, "I'm so confused. I got lost driving to the market." And it triggered something in me because I've heard my son say those things. He was due for his routine labs----chem profile, drug levels, etc.----and I asked his treating psychiatrist to "throw in a Lyme test", without even knowing what "testing for Lyme" might mean.

His ELISA came back positive. His Western Blot came positive with bands at 18, 23, 30, 39. 41, 58, and 93:all IgG.

There is no telling when he got this infection. He's found solace in the woods since he was a little boy. We live on property without fences, have a vegetable garden, and see deer tracks in the snow across our yard every year. Who knows?

I have spent the last couple of weeks filling in the huge empty spaces in my knowledge base about TBD, reading everything I can get my hands on.

The mother part of me is horrified, absolutely horrified. The citizen part of me wants to march on Washington. And the physician part of me is fascinated.

I remember one patient from when I was an intern. She came into the hospital with an acute uveitis and acute renal failure, and no established diagnosis. I had to do her initial admission history and physical. I did as I was taught, starting with the question, "when was the last time you were well?" Taking a careful detailed history of her symptoms, not assuming anything, including asking about travel, exposure to toxins, infections, etc. It took me nearly two hours to complete her admission H&P, and another hour to write it up. The ophthalmologists and nephrologists who came to see her also didn't know what syndrome she had. Their fellows did literature searches, and included the one or two articles in her chart. I found this process fascinating, because we didn't know.

That's the part of me that is fascinated by TBD medicine. Because of what we don't know.

Well, I clearly don't know, and just as clearly others do-----and I hope to learn from you. God willing, when I get my son well and he's back on course, I hope to learn a lot more and put it into practice treating others stricken with this horrible illness.

Sincerely,
S.D. Rosenberg, MD

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