October 6, 2011


i had an MRI last week
i just had one done back in june. that one was done because of my continuous vomiting. that MRI had shown improvement in the lesions in my brain however it had also revealed white matter that was suspicious for ischemic disease. at that time, it was recommended a follow up MRI be done if my symptoms persisted or worsened. 

well, things have gotten worse. a lot worse.

at the time of the june MRI, my barfing was not associated with nausea. in july, i began to experience nausea with my barfing. i wasn't overly concerned about the nausea as i figured it was more a "side effect" of all the barfing. while i was barfing every day, it was, for the most part, only happening in the evenings. however, as august wore on, the frequency of my barfing episodes was increasing, occurring both daytime and evening, the nausea was getting progressively worse and i was experiencing significant head and eye pressure. additionally, i was becoming more and more fatigued.

we flew down to SF to see DR H at the end of august. after going over my symptoms and examining me, he was concerned that my symptoms were suggestive of increased intracranial hypertension (IIH).  he wanted to start me on a medication to address this condition asap. 

here's the thing, i don't like to start anything new while we are in the USA. ironic. there i am in close proximity to really the only doctor i have who understands lyme, knows what to do and how to treat my complicated medical issues - one would think that that would be the best place to start something new. at least, if something happens, i'm near my doctor. yet, let us not forget, that my doctor is in the USA. we pay out of pocket for my medical treatment. our insurance doesn't cover it. sometimes, starting a new med, can cause a reaction that necessitates a trip to the ER. while i don't have the advantage of being seen by a doc in canada who is familiar with lyme and how it affects the body, at least a trip to the ER and the necessary symptom control is covered by insurance. it really is a catch 22.

so, with prescription in hand, we flew back to canada at the tail end of august.
in the days that followed our return, i became progressively sicker and sicker. vomiting and nausea were non-stop. head and eye pressure became intense. my eyesight became blurred. my balance went out the door and attempts to walk left me crumpled on the floor. i could not walk without falling over. i was running fevers and then started to become incoherent.

i think i blogged about all of that already. 
fast forward. 

i started the IIH meds on aug 31.

i responded very well to the meds used to treat IIH. within several days of starting them, my nausea started to resolve, the intense head and eye pressure dissipated and wait for it, wait for it...

i STOPPED barfing.
great news!

i have now been barf free for 30 days in a row. that's the longest amount of time that i've been barf free since LAST october.

Bad news? i've stopped barfing but i'm losing weight. a fairly substantial amount. 
i've lost 12 lbs in the past 30 days. troubling. 
i've been plagued by a plethora of debilitating symptoms for the past 5 weeks. a return of joint pain so severe that i've been on morphine. the noise sensitivity thing, shortness of breath, painful neuropathy so intense that i'm having to ice my feet at least 4 times a day. my balance has improved a lot since starting the IIH treatment, however, it has not resolved and between that and the fatigue, i am unable to drive. 

i'm fatigued beyond belief. the level of fatigue in and of itself is staggering - i have no stamina, zero energy - just taking a shower sends me back to bed for a minimum of 45 minutes up to 2 hours. i've been out of the house 6 times in 5 weeks. my longest outing was 3 hours and i was totally bed bound for 3 days after that. my other little outings? some only 15 minutes in duration - something as innocuousness as making the 1 minute walk to pick up avery from school lands me in bed for 3 hours in order to recover. if it's not the fatigue that's driving me into my bedroom, then it is the profound sensitivity to certain noises, has had me more or less, tucked away in my bedroom for nearly all of september.

in order to accomplish anything, it has to be done in very small, incremental time frames with hours and hours of recovery time sandwiched in between. did i mention yet, that somehow in the midst of all of this, i'm trying to homeschool parker? i am limping and slogging my way thru that. it has been like the blind leading the blind. pshht. if it were not for the incredible support of my friend, lisa, who is helping to tutor parker, i would have had a complete and total nervous breakdown. (more about the home school thing another day)

september has been a nightmare.
it has passed by in a haze of pain, fatigue, stress, loneliness, uncertainty and nothingness. 

but wait, there's more!

about the time the nausea finally resolved, i began having CRAZY reactions to food. i have never had that problem before. and these are not the common food allergies - like gluten, wheat, dairy, etc...all of which most lymies steer clear of anyway (part of the anti-yeast diet)

we're talking reactions to fresh fruit and vegetables.
i KNOW. insane. awful.
fruits i've always eaten in limited quantity because of sugar content...even naturally occurring sugars should be restricted - this is part of the lyme diet but
i LOVE vegetables.

what happens when i eat them?
i break out in mild hives. i'm itchy all over. my mouth and tongue start tingling and my lips get puffy.

it's likely the IIH could have triggered a whole state of imbalance. stands to reason, that an excess amount of fluid build up in the brain will do that. by the time, the IIH was diagnosed and i started meds to treat it, i was clearly in really rough shape. it really knocked the stuffing out of me. and then it's not like i was afforded the luxury of a calm, stress free environment in which to allow my head and body to heal and recover...it was only a week later that we were hit with the whole fight and debacle over parker's PICC line...and the aftermath of that.

what parker went thru was undoubtedly traumatic for all of us. and stressful. and upsetting. and i was already in a weak and altered state of mind when that began...which may or may not have intensified the additional flare of symptoms. 
generally, the stress of our life alone, is enough to cause exhaustion, mental instability and emotional breakdown but it's more complicated than that and it's near impossible to separate or group the symptoms or assign them a specific designation or cause because they just seem to all intertwine and intersect and overlap... so what is it? what is causing what?

why the sudden and dramatic weight loss? 

why the sudden return of such crippling exhaustion and pain? 
is it stress? 
is it depression? 
is it a complete and total relapse of lyme? 
is it nutritional deficiencies? 
is it residual issues of the IIH?

i had a phone appointment with DR H yesterday and those are some of the questions i had for him.

i figured it's probably a combination of all of the above.
he did not think so...here's a simplistic explanation of what he is concerned is now occurring with me...

we know the meds for the IIH are working. i have stopped barfing, the nausea, the head and eye pressure has dissipated and my balance issues have improved dramatically. however, if i am late in taking a dose of the IIH meds, those symptoms start to return at a rapid rate. that, coupled with significant weight loss in short period of time in addition to other symptoms is suggestive of a fairly severe issue with my brain/CNS/neurological functioning.

it appears that my body is making an over abundance of cerebrospinal fluid. my symptoms are suggestive of this. what the mechanism is that is driving that is unknown. why this is occurring is most likely related to my lyme infection but DR H does not believe that the actual lyme infection is responsible for this dramatic downturn in my condition. 

he has referred me to a neurosurgeon. he has faxed over my medical records to the neurosurgeon and i am in the process of completing the new patient intake package. once that is done, we hope to have an appointment with the neurosurgeon within the next 2-3 weeks. the neurosurgeon has been practicing for 20 years. additionally, she is ILADS trained. and has experience with lyme and it's impact on the brain. she is also in new mexico...but thankfully, my initial consult can be done over the phone.
it's all so complicated.

for the time being, i will remain on meds to treat IIH. as well as, the meds that control my seizures, orthostatic hypotension and supplements to support my body systems.

i am off of all abx and am only on an anti-fungal. that one needed to address a yeast issue. (oh, yeah, forgot to mention that i'm dealing with the yeast beast as well)

i don't know how much of this post will actually make sense. i don't even get it all. neither does DR H, hence the referral. it's hard for me to wrap my waterlogged brain around understanding any of anything anymore. it just all feels so complicated.


Jessica said...

Continuing to pray for you and your family. I am so sorry for all you are going through.

LizS said...

new mexico? NEW MEXICO!!! OK, not shouting...sssshhh......but you have got to be kidding me.

trying to be grateful for you on this thanksgiving weekend that there even IS a neurosurgeon willing to take you on, but could they not have been in Bellingham?!!

think of you and pray for you all much more often than my actions might imply.

righteous anger might be a good description for my current emotional state on reading this.