here's the M.U.D (Medical UpDate) on parker:
i guess the biggest news i can lead out with is that we will be stopping parker's IV treatment sometime in the beginning of january - possibly the first week. what a way to ring in the new year! parker has had a total of 16 months of IV treatment and is looking forward to being free of a PICC and all that it entails.
|"viral picc" is going bye-bye!|
this is a big deal and a step forward albeit pulling the PICC line and stopping IV treatment isn't because DR H feels parker is done with IV - rather parker's naughty PICC, (whom he named viral picc,) and the development of collateral veins is forcing the decision to end IV.
|parker's collateral veins|
HOWEVER, DR H is hopeful that parker's symptoms and improvement will be sustainable with oral abx. AND that is exciting! 4 months ago, when parker's original picc, whom he named raymond PICC-aso, suddenly became no longer viable, we HAD to move forward with getting it replaced...without question he needed to remain on IV treatment. so while the PICC removal is premature, it is still a big deal and a "WHOOP! WHOOP!" because we think we can make it without it!
|viral picc and his pad during a lymph leak|
we are ALL looking forward to bidding viral picc farewell. he has been a very naughty and stressful PICC to live with - he's forced us to deal with lymph leaks, blood clots and bleed outs - additionally, keeping up with the rigors of an IV schedule (at times parker's IV treatment was every 8 hours round the clock) is incredibly exhausting. parker is most looking forward to being able to fully submerge in a tub...(a PICC can't get wet) bathing with your arm above your head is not too relaxing.
before the PICC removal takes place, DR H wants parker on one last very intensive IV treatment regime. this will be added into his existing treatment regime over the next week. once everything is incorporated, we will blast away on the new protocol for a solid 2 weeks. DR H has already prescribed a plan for the oral treatment that will follow. we have a phone appt with DR H on jan 3 as it is expected that there will need to be some adjustments and tweaking made - some of which is dependent on his response to this last course of IV treatment.
it is very clear that parker must still be on abx. he is greatly improved but we are not out of the woods yet. not by a long shot. if he begins to decline on the oral treatment than we will have to resume IV treatment and because a PICC line is no longer an viable option, this would mean that he would have to have an IV PORT. (this is an IV device that is surgically implanted under the skin). we are hopeful that we and he never have to face that. currently, his most vicious infection is the babesia - and there are many potent oral medication options used to treat it.
way back in october, DR H (temporarily) stopped parker's antiobiotic treatment while we got the mast cell treatment protocol underway.
the reason this was done was two-fold:
first, it was done so as not to muddy the waters, so to speak. we needed to have a clear clinical view as to whether or not the symptoms that were suspected of being mast cell related were responding to the specific treatment for it. there is much cross over b/n the symptoms of lyme and systemic mast cell disorders. we were pretty certain which symptoms were mast cell related and which were lyme/babesia related but it was important to get as clear a picture as possible. (is that clear as mud!)
secondly, it is not unusual practice for a LLMD to put a patient on an "abx holiday" or to "pulse" abx - this gives the patient's body a rest from the meds and helps the physician re-evaluate the patient's health and symptoms. the goal of treatment is to put the infection into remission and kick start and support the immune system into taking over. the response of the patient during these drug holidays helps guide the physician in deciphering what the next step in treatment is needed and how best to address the specific needs of their patient.
during the four weeks that parker was off of the abx, we saw a positive response in the symptoms that were suspected of MCAD. primarily, these are flushing, loopiness/psychiatric outbursts immediately following any considerable exertion, mystery spots, chest/heart pain and syncope-like episodes (near fainting/blackouts). there was some lessening of his joint pain as well. it was wonderful to see such a remarkable improvement in those symptoms! however, his babesia/lyme related symptoms became more pronounced and his overall health deteriorated. once he was re-started on the IV and oral abx used to specifically treat babesia, he improved...albeit had to endure some pretty rough herxing. a wonderful and unexpected bonus of the MCAD treatment, is that his herxing has been less intense and better managed.
in fact, the MCAD/masto diagnosis really is the missing link to several symptoms that have puzzled and troubled DR H and DR D for quite some time. back in spring of this year, DR H kept remarking that he felt like he was "missing something" with parker. it is good to have found the missing piece to the puzzle. we are hopeful that parker's fight against lyme and babesia will be a little more straightforward and a little less complicated now that his MCAD/masto is being treated.
there is more dirt on parker but i think if i write any more at this point, it'll be clear about as mud...