it started this past september (2012)
a return of anxiety and panic attacks
they had all been gone for a long time.
i tried not to panic (ha ha) that they were returning
i tried to look at it very logically.
i did not immediately assign their return as a sign of lyme. or babesia. or bart. no one on my medical team jumped to that conclusion either.
actually i was pretty convinced (and desperately hopeful) that the underlying issue was not infectious but rather Post Traumatic Stress Disorder (PTSD) related.
this made sense. a LOT of sense that these symptoms could have a psychological base. we have had major trauma and a lot of traumatic events have occurred at the start of fall over the last few years... the boys got ill in fall 2009, sparky started iv treatment in fall 2010, sparky underwent a second picc line surgery in fall 2011 whilst i was bed bound with fluid on the brain and on and on..
as we rolled into this fall and sparky began to deteriorate and his eye stuff started, i could feel myself psychologically "bracing" for all hell to break loose. i could physically feel it. my body showed it. i subconsciously held my body in that way - jaw clenched, shoulders raised and hunched, hands squeezed into tight fists. i was braced, standing guard, totally trapped in "fight or flight" mode.
so off to our therapist i went. we have been seeing this counsellor since jan 2011. she is trained in a specific trauma therapy is called Observed Experiential Integration/One Eye Integration (OEI). i do not think but rather i KNOW i would not be in tact had we not found this treasure of a therapist and this powerful therapy.
OEI has been an incredibly powerful therapy and has aided exponentially in healing the trauma we've experienced on this crazy journey. in a nutshell, our brain remembers stuff and those memories can trigger physical symptoms. trauma forces our brain to process events in an unnatural order and as a result, our brain can get stuck in a neurological looping pattern of 'fight or flight. the problem is only compounded when multiple traumas occur back to back. OEI aids the brain in re-processing the events and breaking the unnatural pattern of neurological looping. in a sense, it helps re-wire the parts of the brain that were set into a frenzied state due to traumatic events. i will be blogging more specifics about OEI therapy in a future post. for the time being, you can find out a bit more about OEI by reading about it here, and read about the OEI theory and case histories here.
i worked hard during my weekly 90 minute sessions. there was so much growth and healing accomplished...i came out of them stronger, more centered and peaceful, feeling lighter and no longer felt like my brain was caught in "flight, fight or freeze" mode. even my posture changed. however, the anxiety/panic attacks continued. like clock work, every 4 weeks, they intensified in duration and frequency. this 4 week cycling of symptoms can be an indicator that lyme is lurking in the shadows. still, i kept doing the psychological work and fighting for my freedom...ever hopeful the anxiety issues were psychologically triggered as opposed to infectious related.
by this point, it was november. we flew down to SF to see DR H at end of november. he felt it was difficult to ascertain whether or not these symptoms were infection driven or not. after all, a 4 week cycling could originate from hormonal imbalances as well. he ordered lab work to have hormone panels done but felt it advisable to start me on one oral abx as i had been off all abx for about 9 months. he rx'd an abx called plaquenil. it treats both babesia and lyme. DR H suspected that if the anxiety/panic was due to infectious cause than babesia would most likely be the culprit.
i started the plaquenil and within 3 days had an intensifying of my symptoms. this lasted for the next 2 weeks...and then they were GONE. POOF. just like that. 100% gone.
it meant one thing.
they had been infection driven.
several weeks later, just after christmas, i came down with a nasty gum infection.
my dentist put me on the abx clindamyacin.
the dose i was prescribed just happens to be very powerful against babesia.
i started the clindamyacin and within 3 days all hell broke loose.
pain. pain. pain.
depression. dark, deep depression hit.
i finished off the short 10 day course of treatment. thankfully, my gum infection cleared up. unfortunately, that short course provoked a major herx and set in motion a cascading return of neurological symptoms.
as the weeks rolled on into late january, i went to a very dark and scary place. suicidal ideation returned along with a trickling return of neurological stuff. primarily...pins and needles and electric-like shocks in extremities, other very odd sensations, facial pain, nerve pain and my insomnia got worse and even sleeping pills were not always able to knock me out.
my brain began short circuiting again - i have lapses where i become disoriented and forget how to get to familiar places and number dyslexia. nothing severe but definitely noticeable. when i was at my sickest, i would have memory lapses that caused me to forget what my name was or how to sign my name, or what my kid's names were or their ages, or where i was, or how to open the car door...it is a scary thing...i would go for a walk in our neighborhood and not be able to find my way home (we've lived in the same house for 14 years). so the return of these recent brief, less severe lapses is disconcerting. i remember how terrifying it is to not remember.
so, long story short
the clindamyacin awoke the sleeping babesia monster
i just haven't been the same since.
this how we arrive at the present
the return of IV abx treatment.
oh, yeah, and one other major issue has prompted the need for IV abx treatment.
my barfing...it started march 14, 2012 and it is still ongoing a full year later...the daily churning of my gut has taken many twists and turns over this past year...enough so that i will have to reserve the right to spew that story in an upcoming post.
in light of babs rearing its ugly head and the return of some neurological issues, my docs do think that active lyme, babs or bart may be ONE of the underlying causes of the barfing. whether it is from infection within the gut or mediated from the brain is unknown. DR H suspects the barfing could be partly mediated by an infection in my frontal cortex and/or vagus nerve. hence, the indication to hit me with a course of IV as this is able to penetrate the blood/brain barrier.
but, wait, DR H is still not convinced that infection is the sole underlying cause of the barfing. there are a few other issues that are under investigation that could be contributing factors. the 2 primary suspects are a mild estrogen dominance imbalance and, of all things obscure, an abdominal migraine disorder. confused, yet?
one thing is for sure, nothing about this is simple. straightforward. nor uncomplicated. my insides are one big, scrambled mish mash of complexity.
more to come...but for now, i hope i've helped you see how IV came to be.