Borrelioosiin sairastuneiden henkilökohtaisia kokemuksia taudista ja sen hoidosta.

Valvojat: Borrelioosiyhdistys, Bb, Jatta1001, Bb, Jatta1001, Borrelioosiyhdistys, Jatta1001, Borrelioosiyhdistys, Bb, Jatta1001, Borrelioosiyhdistys, Bb

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Viestit: 3151
Liittynyt: Ke Tammi 21, 2009 14:16


Viesti Kirjoittaja soijuv » Ke Joulu 26, 2012 10:50

Medhelp-sivustolla eräs äiti kertoo poikansa sairauskertomuksen. ... ow/1863609

Poika alkoi kuumeilla, niskakipua -ja jäykkyyttä. Lääkäri mainitsi oireiden johtuvan viruksesta. Oireet kuitenkin jatkuivat. Uusi lääkärikäynti - sama vastaus. Äiti huomasi pojan selässä laajan punoittavan ihomuutoksen. Äiti kertoi epäilevänsä pojalla olevan borrelioosin. Hänelle sanottiin että hän ei ole terveydenhuollon ammattilainen eikä voi tehdä borrelioosidiagnoosia. Testit olivat positiiviset. Antibioottia kirjoitettiin 5vrk:n kuuri.
Muutaman kuukauden kuluttua poika alkoi heräillä öisin itkien - jalat ja polvet kipuilivat. Takaisin lääkäriin. Tämän mukaan oireet eivät voi enää johtua borreliabakteeerista koska poika oli saanut hoidon. Takaisin kotiin.

Kuumeilu alkoi jonkun ajan kuluttua uudelleen. Selityksesi annettiin virustauti koulusta. Kovia vatsa-ja nivelkipuja, jalat pettivät alta jne. Sairaalassa oireiden syytä ei tiedetty. Kuume laski yllättäen ja poika päästettiin kotiin ilman diagnoosia. Reumalääkärin diagnoosina oli "ajoittainen kuumeilu" ja hän kirjoitti steroideja. Epäiltiin jotakin autoimmuunitilaa koska IgG4 koholla. Tehtiin erilaisia kuvantamistutkimuksia jne. Äiti epäilee ja kysyy johtuvatko lapsen oireet edelleen borreliabakteerista? Aiheuttaako borreliabakteeri autoimmuunioireita?

At the age of 5 my son started to run a fever, complain of neck pain and stiffness, brought him into the doc's office, got told he has a virus! several days pass, fever climbs higher, he's absolutely miserable! Bring him into the docs, get told yet again...its a virus! Bring him back home, fever persists, stiffness gets worse ,back into the docs, again get told its just a virus and to send him to school on Monday ( it was Friday ) On Monday get him up, start to dress him when i notice a huge big red bulls eye rash Covering 2/3rds of his back. ( was not there the evening before when i bathed him) Finish dressing him, put him in the car and drive to docs office......where i tell the receptionist my son needs to be seen NOW!! That it is not a virus he has, that i believe he has Lyme disease, initially i get refused an appointment, which prompts my temper!! I get told..." You are not a medical professional, you are not qualified to make a diagnosis of Lyme disease" To which i lost my mind!! I turned my sons back to the receptionist , lifted the back of his shirt and showed her the rash!! Then i state its not rocket science and if he is not seen by a doctor out of this office i will be bringing him to the ER and i will call the AMA and report every single doc in the practice that has seen him and misdiagnosed him!!! Well they set him up with a appt to see the doc, doc comes in and says Virus still not going away, to which i respond....its not a virus!! Its lyme disease and i promptly show my sons back to doc, trip to the lab ....where they draw labs, they draw enough tubes to do the ELISA and the western blot test!! Both come back Positive!!

Doc puts my son on a antibiotic for 5 days!! All it did was put the lyme into silent mode!! couple of months pass, then my son starts waking up screaming in the middle of the night....his knee's and legs hurt!! I call docs , bring him in, tell him i do not think the lyme disease is gone! get told we treated him with antibiotic its gone, i persist its not....get told he has the flu. Bring him home, still waking up in the middle of the night crying it hurts really bad, next his knee's swell to 2x their normal size ...back into the docs. To be told...its growing pains!! This goes on for several months!!!
Kivut pahenivat, polvi turposi 2x jne. Lääkärin mukaan kyse on kasvukivuista.
Lopulta 3kk:n kuluttua menimme jälleen lääkärille joka sanoi että kyseessä ei ole borreliabakteeri. Lähete reumalääkärille jonne pääsy kesti n. 10kk. Tutkimusten jälkeen läkäri toresi pojan sairastavan myöhäisvaiheen borrelioosia. Hoidoksi 2 kk antibioottia.

Lapsi voi melko hyvin vuoden ajan.
Finally after 12 weeks i cant take anymore of the sleepless nights, the crying....watching him be in immense pain!! Back into the docs, to be told yet again " Its not Lyme disease" Sick of hearing its not Lyme disease i request a referral to a Rheumatoid Arthritis doc.....get told he would do it , well 2 weeks pass, with no the docs office....get told they are working on it!!! Another 2 weeks pass, to find out about it, get told they are still working on it! By the time i did get that referral ...8 months had passed!! Took an additional 2 months to wait for the Rheumatoid Arthritis by the time this doc see's my son...almost a year has passed!! This doc looks at my sons swollen knee's, then does a ultrasound in office , looks at me and tells me my son's lyme has become disseminated!! he then put my son on a 8 week course of antibiotics!! I make another appointment with my sons primary after that, we go into the appt and doc looks me dead in the face and states " See i told you it wasn't lyme disease . To which i felt very angry and stated " Evidently you did not review the notes the doc had faxed over to you, or you would know my son has disseminated lyme disease!! To which i abruptly fired him!!!

Next i find a doc board certified with the American Academy of Pediatrics! My son appeared to do well for the next 12 months...then out of the blue started to run fevers between 101- 102. Bring him into the docs, They think he must have caught some sort of virus from school. Back home with orders for him to rest and push fluids. Two weeks pass with him consistently running temps 101-102 range. Back into the docs, they examine him, and tell me we are unsure what is causing the fever , there is no clinical reason we can see for the fever. So once again back home with orders for rest and more fluids, on week sons temps spike to 104-104.5....back into docs, still no clinical findings , so off to the lab , they draw blood a ESR and CRP The ESR came back at 100 and the CRP at 15.3. They tell me those tests signify something is going on, but do not tell them what! So lab draws every 2 days, he is complaining of stomach pain and bad joint pain. Week 4 hits....fever stays at 104.5 ....even on tylenol and ibuprofen!! One sunday Morning in 5/2011 i wake up to my son crying hysterically( 6:30 am ) , i ask what is wrong, he tells me....I have to go potty...but my legs wont work, So i pick him up and we race to the ER....where he is promptly admitted into the pediatric ward of the hosp! test after test, doc after doc come through my sons hosp room, none know what is making him so damn sick!!!

After 4 days in the hosp i corner one of the docs, and demand an explanation on what is wrong with my son. The doc places his hands to his face, sighs, and proceeds to tell me they do not know what is wrong with him!! that he is dying and they don't know why!!! My heart was shattered...i went straight to the hosp chapel and proceeded to pray and bargain with GOD! Two days later....His fever started to drop...4 days after i get told he is dying....he is fever free...on Day 5 ....they send us home....without a diagnosis!!! My son then misses the last 6 weeks of school...because he is sleeping 18 hrs a day!!!! Then abruptly it changes and he has insomnia and goes from sleeping 18 hrs a sleeping maybe 4 hrs a night!! I contact the rheumatoid arthritis doc again, explain what has transpired, this amazing doc schedules my son right away double booking himself!! he decides to do more lab work, We then get a diagnosis of " Periodic fever syndrome" , he goes on a steroid and seems to do great!!

We stop the steroid and 8 weeks after stopping it, my son starts with the fevers again as well as debilitating stomach pain, and joint pain! So more labs ...he does a test called igg4...the first results show a level of 113.3 ( normal is 2.0-80.0) doc says usually Autoimmune Pancreatitis is usually what causes a positive igg4, so he then orders a Amylase/lipase panel....which come back in normal range, , so he wonders if it could be a lab error, so we repeat the test....with the level coming back higher than the first time it was run with a value of 125.3. day after the son starts to complain of very bad stomach pain, the pain meds were only controlling the pain for 90 mins with each dose. So a decision is made for him to go in for a emergency endoscopy and colonoscopy.....where biopsies were taken. I do not have the results to that back yet, as it takes 7-10 days to process the biopsies. Back into the docs office this past friday where i get told....he has igg4 related syndrome. On saturday he started a course of Steroid, he is going to be on it til the end of january when we go to the lab and have yet more blood drawn to see if his igg4 levels are dropping. I am feeling extremely frustrated at this point, today is his 2nd day back to school since being absent since just before thanksgiving. I Guess i am wondering......Could all this still be the Lyme disease? despite being treated on the antibiotic for 2 months? Nothing else feels to me like it fits. Can Lyme disease cause an Auto Immune Disorder?

Tags: lyme, Autoimmune disorders, frequent high fevers, Joint Pain

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