THE YEAR OF BARF

here is a not so brief review of my one year long, ongoing barfing saga...

on march 14,2012, i started vomiting daily. meals would come up wholly undigested 4 hours after eating them. the condition was diagnosed as gastroparesis (partial paralysis of stomach). no one on my medical team jumped the gun and immediately assigned lyme as the underlying cause. DR H suspected an infection called mycoplasma pneumonia was the trigger. in the general population, this infection presents as pneumonia. of course, i had no respiratory symptoms... but mycoplasmas are heinous little microbes that can provoke unusual neurological symptoms in immuno-compromised individuals.

sure enough, lab testing revealed that i had an acute and active mycoplasma pneumonia infection. i was put on several courses of abx treatment for the mycoplasma. it didn't stop my vomiting however the food that i barfed up was more digested so we new there was or at least had been some connection.

yet, clearly, the mycoplasma infection was not the only trigger behind the vomiting. but what else is behind it? neither my docs nor i were convinced that lyme or my co-infections babesia and bart were to blame. there were a multitude of other possibilities. so we've spent the better part of this past year, trying to treat and address it from every angle - holistic, homeopathic, herbal, nutritional support, digestive enzymes, hormone, detox, psychological, emotional, stress reduction, trauma therapy, chiropractic, etc...but fast forward one year down the road and despite implementing these varying methodologies and treatments, i'm still vomiting nearly every day. 

investigating the vomiting has meant i've once again been bounced around from specialist to specialist in the mainstream medical system. this has been one of the most frustrating parts of this whole year of barf. really, the doctor's appointments have been far more difficult to endure than the part where i'm bent over a toilet bowl every nite hurling my guts. we've been very, very careful and guarded in what we say about lyme or my history with it when meeting each new specialist. as much as possible, we have approached the issue of vomiting as a non-lyme issue. after all, over this past year, i have not been on active treatment for lyme. it is fair and truthful to say that i had needed extended treatment for lyme but that i was no longer being treated for it and most of my lyme related symptoms had resolved.

upon hearing this, an internist i saw, stated that seeing as my lyme treatment had taken years that it was much more likely that i had just had a spontaneous recovery of my symptoms rather than an actual response to treatment.

still scratching our heads over that logic.

a visit to a neurologist morphed into a 2 hour appointment in which he felt the need to enlighten us on the issue of lyme. he told us that it is his public duty to let the general public know that lyme is a cult. 

i simply responded that i had been severely disabled by lyme for many years. i had been treated for it and my most disabling symptoms had resolved. 

to which he responded, "i could care less whether or not you had lyme. maybe you did. maybe not. good for you if you feel better. the only reason you are better is because you did not get sucked into the vortex that is the cult of lyme." that is verbatim. word for word. i recorded the conversation.

needless to say, these comments are infuriating. troublesome. grievous. enough to set anyone's stomach churning. and blood boiling. 

what became necessity this year was that every appointment with each new doctor was followed up with a trip to my trauma therapist. 

it took awhile to find a GI doc that was willing to listen and not jump to conclusions. i saw my first one back in july 2012. graham had come with me to this appointment to help explain my strange barfing and to provide "back up" - as we knew that a barfing woman can easily be labelled bulimic. i'm not naive to that. 

we told him i vomit exactly 4 hours after i eat. i have no nausea. i have no pain. the food just simply comes up and is not digested. graham explained to him that my vomiting happens everywhere or anywhere - on the side of the road, in parking lots, restaurants, doctor's offices, airports etc.

he was nice enough but i didn't feel like he was really listening to me. within minutes of our appointment, he was wanting to refer me to another specialist. i ended up leaving his office with a referral to another specialist - upon googling the name of the doctor we discovered the referral was to the head of the eating disorder clinic in our city. argh! i was royally and fantastically choked about that. nonetheless, i was willing to go to the appointment. at this point, i was becoming so nutritionally depleted that i was willing to take whatever help i could get. i just wanted someone to assist us in solving this barfing fiasco. 

so the referral to the eating disorder doc was sent in. come to find out, that it is a 6 to 12 month wait to get in to see this doc. i phoned the GI doctor back and said that it was an unacceptable amount of time to wait. if i have to wait that long i will either be dead or will have vomited up my stomach by then. furthermore, this is not a psychological issue. it is either neurological or mechanical. find me a doctor that will investigate it. several calls later and i finally had an appointment with the internist. 

at least that was only a 7 week wait. 

aside from enlightening me with her spontaneous recovery theory, my first appointment with the internist went okay. she confirmed that the GI doc had indeed been dismissive and had termed me a "functional vomiter" which is doctor speak for self-induced vomiting. fortunately, by the time i saw her, i had seen an immunologist that had confirmed that i had a mast cell disorder. additionally, i had positive lab results for immunoglobulin deficiencies. all of this, she felt provided evidence that there was something physical going on. she believed that the complexity of my immune system issues and mast cell disorder warranted the need for me to have an endoscopy and stomach biopsy.

she personally called the original GI doc, explained her findings and asked him to do an endoscopy. i wasn't particularly pleased at the thought of having to deal with a doctor that had blown me off the first time around however, we wanted the process expedited and getting into see him would be faster than having to start with a brand new GI doc. honestly, upon learning i may need to see him again, i did toss around the idea of timing my visit with him to co-incide with my vomitous hour of the day. i daydreamed about walking into his office and just spewing all over his desk. when i shared this little plan with graham, he wisely suggested that that would probably only earn me the label of "performance vomitter". ha ha. 

the GI doc told the internist that his office would call me to schedule. they never did.

it took 4 months to get in with a new GI doc. i finally saw him in feb 2013. thankfully, this guy seems to have been worth the wait. he listened. was not dismissive. and at the end of our appointment he said, "look, if it's alright with you, i'm scheduling you for an endoscopy and i'm going to biopsy the hell out of your stomach."

guy doesn't mince words.
my endoscopy is scheduled for this coming monday, april 15.

in the meantime, we still have a few theories that are under investigation. we're having to systematically go through and test each theory out and that just takes time. a whole lot of time.

at the end of january, after a lot of research, my LLMD's considered the possibility of my vomiting being due to a type of abdominal migraine and/or Cyclic Vomiting Syndrome. i don't exactly fit neatly in the diagnostic box for it but hey, i'm generally an outside of the box patient. after all, i had pneumonia with NO respiratory symptoms. weird or what?! 

there is no way to "test" for abdominal migraine other than to treat me for it.   i waited to start treating this until we saw the new GI guy. we discussed with him the possibility of this being a abdominal migraine issue and he concurred that it was certainly a possibility. he agreed that i should start the treatment for it. the good thing is that the treatment is fairly benign. it is comprised of 3 medications. 2 are natural - l'carnitine and coenzyme Q10 . 1 is prescription - amitryptaline. i have been on the first 2 since february. about 2 weeks after starting them, i had 4 barf free days in a row!! outstanding! we were ecstatic and thinking we'd finally solved the barfing puzzle...until my vomiting returned with a vengeance on the 4th day. HOWEVER, since starting this treatment, i do have about 5 days per month where i don't barf. believe it or not, this is an improvement! prior to that, i had had NO barf free days for 11 months straight.

the last issue we're looking at is hormonal imbalances. there may or may not be a connection to the vomiting. as this year has dragged on, a bit of a pattern has emerged. my vomiting certainly intensifies and becomes more prolific during certain times of the month.  my hormone levels have recently showed a slight imbalance between my estrogen and progesterone levels. 

once i get thru the endoscopy, i will be starting on a progesterone medication and a supplement called DIM to help correct the imbalances.

who knows? maybe, just maybe, a little progesterone will be what it takes to bring my year of barf to an end.