November 10, 2010


parker has not been lucid since saturday and his pain levels have sky rocketed.

we've spoken with DR H every day since this started. we knew to expect a big herx at the 6 week mark of IV but this insanity we never anticipated. how could anyone? it's beyond comprehension.  it feels like this disease has swallowed him up. gone is parker. our gentle, sweet, tender hearted, soft spoken, quick witted sparky has disappeared. 

on sunday, DR H pulled him off of all his meds and started a very intensive detox regime. yesterday (tuesday) we started to see some mild improvements in his condition. he was still hallucinating often but he had more moments of lucidity. he was less aggressive and agitated. as we headed into tuesday evening, we dared to breath a sigh of relief and thought we were through the worst of it. not so. tuesday evening his condition deteriorated again. it got really crazy and really, really scary. 

DR H has wanted us to get blood work done but leaving the house has just not been at all possible. fortunately, this morning (wednesday), parker was more subdued.  enough so, that we felt like we could handle getting him out of the house. after the night we had, coupled with the preceding days, we felt like we had to do whatever it takes to get that blood work done. herxing can be really hard on your system. given how ill he is, i was very worried that his liver and kidneys were just not handling the high toxin load that is caused by the bacteria dying. and, to be honest, a tiny little part of me, by this point, is wondering ... what if this isn't just a herx? what if this toxic die off has triggered something more? he is just so sick. so not there. so very, very vacant. his eyes are wild and unseeing. it is absolutely terrifying to witness. how can one disease cause such mayhem in the body and in the brain? even after living through it myself, i can't comprehend it.

we took him in to see our doctor, DR A. ( side note - DR A is lyme friendly and is helping to treat me. unfortunately, because of the persecution against lyme docs he can't prescribe parker's treatment. one lyme patient can maybe slide past the watch dogs but prescribing for two? too risky.) at any rate, we are grateful for the compassionate care that DR A gives parker. he monitors parker's blood work with monthly orders. and he also helped us get nursing care for parker's PICC line. most importantly, he is really supportive and he gets that lyme can do all this crazy stuff to a person. 

by the time we got parker into DR A's office, he was hallucinating again and was in and out of it. he was also extremely agitated. we explained to DR A what has been going on. he was in agreement with DR H that this is a herx. and that getting blood work done was a good idea. parker's symptoms are really severe. he is completely not himself. at all. during our appointment, he indicated to DR A that he wanted to harm himself. i cannot express how gut wrenching it is to hear your child say that. DR A said that he thought it would be best if we took him in to children's hospital. doing so, means we'd get test results the same day and if something else is going on, than it could be addressed immediately.  

we drove straight from DR A's office to children's hospital. thankfully, we didn't have to wait long at all to see the ER doctor. we told the ER doctor that parker was undergoing IV treatment for neuro lyme and that he was undergoing a very intensive herxeimer reaction. that this die off was causing his physical debilitation and his psychiatric behaviour. however, our lyme doctors wanted us to air on the side of caution and just make sure that nothing else was going on. we also explained the detox protocal that DR H had prescribed. and that there had been improvement in parker's condition since starting that.

the ER doc safely skirted the lyme issue but went ahead and ordered the blood work. he also called in a psychiatrist. given parker's symptoms, we expected that. we met with the psychiatrist. parker was in and out of it a lot during the evaluation. the psychiatrist asked him a million questions. poor parker kept falling asleep. than would wake up, be lucid for several minutes than get loopy again. then the psychiatrist asked us a million questions. then he spoke to us alone. then he spoke with parker alone. then he asked us a million more questions. but he was very kind and somehow he was able to extract enough information from our semi-concious son to make a diagnosis.

all in all, we spent 5 hours in hospital.
the psychiatrist concluded that parker does not have any sort of psychiatric condition. 
he diagnosed parker with

delirium is syndrome that is caused by an underlying condition.

the psychiatrist said that "our explanation" of neuro lyme fit the bill as the underlying condition.
and that the delirium is a result of the herxing.
the ER doc agreed.
altho' he was quick to point out that he "didn't know a lot about lyme because, as you know we don't see a lot of that here."
both doctor's were also in agreement with the detox treatment that DR H had prescribed.

despite his symptoms,
parker doesn't have a psychiatric disorder
we are so relieved.

despite his symptoms,
his blood work came back a-okay. on paper he looks like the picture of health.
we are so relieved.

he is herxing.
it is what it is
it is a crazy, incomprehensible ride. we feel like we have been plucked out of reality and dropped into a twilight zone. it is nearly impossible to believe that this stupid disese can cause all of this insanity and suffering.
but it can
it does

it is what it is.

1 comment:

Renee said...

Keeping Parker and all of you in prayer. The horrors of this disease continue to amaze me....May God have mercy on Parker and bring him through this quickly into better health.