ON GUARD

last nite my hubby dreamed of the royals.
he is not a royal watcher.
so this is odd.
(personally i think it's odd whether you are a royal watcher or not)

to my great relief, he did not dream about having tea with the queen.
that would have taken it from odd to weird and creepy.

he was at buckingham palace hobnobbing with prince harry.

according to graham, prince harry is a rather funny chap.

so the dream continues...
he and harry were just shooting the breeze, enjoying an easy going camaraderie within the privacy of the palace.
he refuses to divulge any details about their chummy conversations as he says i'm not privy to royal rhetoric.

harumph.

but this is the part he would tell me about;

he and harry were getting along grandly until a disheveled man in a surgical mask burst into the ballroom they were in.
turns out the masked man was a surgeon.
he was haphazardly holding all sorts surgical supplies
and
he began excitedly waving them towards graham and yelling,

"check this one out! this is what i'm going to implant into your son!" 

graham immediately felt alarmed

"ummm, that hose-thingy looks about 12 inches too big in diameter." he nervously stated.

"oh, no it's the perfect size. and it's your lucky day - this is the last one!" the surgeon cackled.

graham eyeballed the unusual device... the "out-of-its-sterile packaging, swinging-thru-the-stale, damp air of a 300 year old castle" device

with his heart in his throat and mouth dry as a desert, he managed to squeak out, "ummm, i think i need to run this past my wife. that, ummm, doesn't look quite right to me but she's the one with the medical expertise."
(that's my favorite part of the dream)

he remembers that moment in his dream, 
the sheer panic 
and how he couldn't think straight
and
how his limbs went numb
and
his movements became slow and methodical.

he fumbled for his cell phone
and
then just stared at it.

he had know idea how to work it.

he turned to his buddy, the prince, "do you have a phone i could use?'

"sure thing." came prince harry's lilting british reply, "there is one in the palace infirmary. come along now, mate, follow me."

then began the walk through endless, winding corridors. carried on trembling knees and spaghetti legs. buckingham was more cavernous warehouse than palace.

finally, they reached he infirmary
and
the phone.

the giant rotary phone

graham kept trying to dial
but 
wooden arms
and 
fumbling fingers
made it next to impossible

just at that moment, the queen came in and proclaimed,

ok, so the queen part of the dream is not true... but it would make the story that.much.better
however
it does provide a perfect segue from dream to reality.

reality is that sparky will undergo 2 procedures in the USA tomorrow (tuesday).

my hubby's bizarre royal dream is a clear indication that we are all pretty stressed. (either that or he is eating way too much cheese before bed)

we are asking for your prayers - 

for safe travel
for the procedures to go smoothly
for the recovery & healing process (2-4 weeks)
and
all the specifics that we can't go into detail with because we have to be a bit "on guard".

the procedures will take place from noon to 3pm. he will require sedation. we are concerned about this as he has a mast cell disorder called MCAD. this means that his body can be hyper reactive to certain medications and puts him at risk of going into anaphylaxis. because of this, he is on a regime consisting of prednisone, benadryl, ketotifen, cromolyn, ranitidine and cetrizine. the prednisone is a steroid and is not ideal with lyme because it suppresses the immune system. however, it is a necessary evil at this time. the other medications are part of his normally prescribed treatment plan to control his MCAD. the dosing has just been increased with them.

we are thankful for the medical team - the surgeon and 2 nurses that will be assisting. they have bent over backwards over these last 2 weeks to make all the arrangements necessary. we believe that they are well equipped and prepared to handle his unique case.

it has taken several hours worth of phone calls and consults to make this happen.  i have talked at length with the head nurse. we have had much trepidation over this. we have prayed and wished and hoped that this would not be a needed step on our journey, yet here we are. once again, faced with the challenge of taking a leap of faith. graham has been much more sure-footed than i.  however, during my last phone call with the nurse, i did finally have a sense of peace wash over me - but, to be totally truthful, in the last 24 hours, i think it washed right over me and kept going... 

we are nervous. sparky is scared. it's a lot to handle.

yet, we trust God goes before us. walks beside us. and stands behind us.

please keep us in your prayers

and, of course,

God save the queen.

SHANNON'S SUPER M.U.D

here's my latest M.U.D. (Medical UpDate) and the scoop on the outcome of my appointment with DR H. i have super news to share! 
i have been OFF of all abx since aug 31.

yup, you read that right...i've been OFF both oral and IV abx for nearly 4 months.

i'll give it a moment to sink in... after all, it is mindbogglingly, fantastically awesome news to share.

yup. doing the happy dance.


i have been ON aggressive oral abx treatment since april 2007...and IV abx since jan 2008. so for me to be OFF of abx for the past 4 months and be doing (relatively) well indicates that my lyme and co-infections have been brought down to more manageable levels and my immune system is beginning to do what needs to be done in order to keep them that way. 


clearly, this is huge progress. 


i have NEVER been able to maintain any level of health OFF of abx in the past. often, there has been a very fast deterioration and a very rapid return of debilitating symptoms during previous trial runs of drug holidays. if co-infections are at a high load, lyme rears its ugly head very rapidly upon withdrawal of abx treatment. however, this has not been the case with me this time. we've not seen any indication of a regression. in fact, i am actually continuing to get stronger and improve. that is an awesome and remarkable gift. DR H believes that this is a good indication that we have finally beaten both my babesia and bartonella infections into submission. at my appointment, there was no talk of "remission" for either of those infections or lyme but i'll take a rendering of "submission" for the time being. that sounds like music to my ears and for now, DR H is continuing to keep me OFF of ABX! HOW AMAZING! 

PORTRAIT OF SUBMISSIVE BUGS

i am not able to go so far as to have my PICC line removed. we are not at that stage yet. DR H is concerned that my body is in a sort of 'holding pattern' right now - and that the scales could easily tip either way. partly, because we've seen improvement with me before...only to have it followed by a regression of epic proportions. even tho' i'm doing better and am getting stronger, DR H is very concerned that i am in a very fragile state...after all, my nutritional intake is so super restricted...it's pretty much a non-nutrient intake actually. this does not bode well for building my body's strength or defenses.


since september, i have been intensely reactive to and unable to eat any fruits and veggies. this is certainly no way for anyone to be at the best of times let alone when one is needing to eat in order to build up and strengthen the immune system. this is a critical and crucial time. my body needs to be fueled properly in order to keep fighting...and yet, right now, eating healthfully makes me terribly ill and toxic. i know, right? so bizarre.

basically, i can eat meat and simple carbs...simple being the operative as even complex carbs are triggering toxic side effects with me. i have to watch my fat intake because i have above normal levels of lipids (fat) in my blood. even more bizarre. i am like a skinny fat person.  the food re-activity is confusing and frustrating. i LOVE vegetables. that is what my body has always naturally gravitated to...and now, they are quite literally the death of me. so what's a girl to do? for starters, the short term plan is that i will be on on IVs to address my nutritional deficiencies and supplement several of my depleted mineral levels.

and long term? am i looking at a future devoid of fruits and veggies? i can't imagine. but no one really knows what to do with me. over the next little while, DR H is going to be networking with some colleagues to figure it out. we do know that this is most likely related to my mast cell disorder. and if i start to explain THAT, this post will morph into a lengthy and very confusing scientific journal entry...while it is complex to explain, it is all rather fascinating (to me, anyway) so i'm working on a post that'll explain it as simply as possible as soon as possible.


there is much more to talk of...in addition to dealing with my nutritional needs, over the next several weeks my treatment will be primarily focussed on bringing down my viral load (which is very high), and addressing my immune deficiencies (i have issues with both igA and igG deficiencies) and tweaking the meds that are part of the treatment protocol i am on for my MCAD/mast cell disorder.


am i done with abx treatment for good? no. DR H believes i'll still need another round of IV. not sure when and not sure for how long. am i out of the woods yet? no... but PRAISE GOD, there is LIGHT! i feel it. i know we've been at the place before where we dared to think that we could see a pinprick of light at the end of this long, dark tunnel only to fall down the rabbit hole again.

but i'm more hopeful than i've ever been before that my improvements thus far are and will be sustainable...that hope filled confidence truly came to light for me about a week ago.


i was crawling into bed one night and as i was doing so, i had a very odd thought flash thru my mind. i was thinking about how i couldn't wait for the 'morrow. it stopped me short in my tracks...


'hold on,' i thought, 'why am i feeling excited about tomorrow? i have no special plans.' 
i nearly toppled out of bed when i realized that it was because i wasn't dreading the day to come...the 'morrow no longer felt like a dreadful burden to bear. 

and then the flood gates were released and the tears poured forth... as they do again as i write this and re-live that strange, foreign, amazingly wonderful moment when i experienced the simple pleasure of just being alive. 


i haven't felt that way in 6 years.


i do believe it is the dawning of a new day. 

SPARKY'S M.U.D

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...