June 4, 2012

CHOKE, SPUTTER, ARGH!

i figure i may as well stick with guttural utterences as the titles to my posts...and anyways, i'm currently so choked, i literally have no words.


i just found out i have mycoplasma pneuomoniae. 


choke, sputter, argh!!


so it sucks to find out another infectious disease has invaded my body...but that's not what has me so choked.
it's that my GP got the positive test results for this infection on MAY 1...but because of either an over sight or clerical error at his office, the results got buried in my file. therefore, i was not notified. i've been dragging myself around with an untreated case of atypical pneumonia since the end of april. no wonder i feel like walking death.


choke, sputter, argh!




adding to my sputtering frustration is the fact that the whole reason i was tested for this infection to begin with is because DR H thought that it was the underlying cause of my barfing. 


choke, sputter, ARGH!


hold up, how does a weird variant of pneumonia cause gastroparesis and vomiting? well, here's the thing, mycoplasma pneumoniae infections are closely linked with lyme. it is well known in lyme literate MD circles that mycoplasma infections are a particularly pesky pathogen that can very well manifest in atypical ways in lyme and/or immunodeficient patients. untreated mycoplasma can invade the nervous system and cause all sorts of systemic issues and neurological symptoms. aside from causing respiratory issues, it can also attack the joints, the GI tract, and other organs in the body etc. it can also cause encephalitis. all of which i've been plagued with for the past 2 months.


this is why DR H and his PA (physician assistant) suspected i might have mycoplasma and wanted me tested for it. which is why i went to my GP and asked him to order the blood test for it. my GP knew this was being investigated as the root cause of my vomiting. which is why i can't understand why he never double checked my lab results.


why was this not RELEVANT and IMPORTANT enough to follow up on?


those test results came back MAY 1! i have spent an additional 30 days feeling like i've been run over by a truck and spewing my guts out and that may have been squelched had we gotten those results in a timely fashion and been able to get me started on antibiotics. all of which may have helped to avert the train wreck my body  now is.


choke, sputter, ARGH!


I AM SO MAD
and
i'm also choked at myself too


what am i always telling people to do?
always get a copy of your lab results and never assume that "no news is good news"
i should learn to heed my own advice!
be your own advocate. be on top of it. follow it up.
i know this.
i know this.
so why didn't i do it?
choke, sputter, argh!


i should never have assumed those test results were negative. 
i know better
but man, oh, man, i really did not think i would have to be fastidious in following this one up.
the only reason i found out is because i just came down with a raging sore throat, cough and chest congestion and i went to my GP to get tested for strep. while i was there i fortunately thought to ask about the myco test results...


"i'm guessing my myco came back negative?" i casually queried
he leafed thru my file
"umm, actually, oh, it did come back positive for acute infection. i'm sorry, i somehow missed that."


choke, sputter, argh!


medical goof ups happen
and
the maddening thing is that the patient pays for it. i'm literally paying for it both physically and financially.


the plan?
well, now that we have concrete evidence that myco is definately at play here, DR H is aggressively treating it with antibiotics. hello, after a nice long hiatus, i'm back on antibiotics. boo. however, i suppose it is nice that it is not lyme that has pushed me out of my antibiotic retirement. the hope is that once we start beating back this infection, the vomiting will cease.
however, i'm so far down the line with this now that that is not necessarily a given. the myco may have been the initial trigger but it is likely that my chronic vomiting is no longer just infection related but is being further perpetuated by nutritional imbalances in my body.


for the next 6 weeks, i will be 'fed' IV vitamins, nutrients and amino acids in order to re-balance my body. my GP did not think he could get this set up through our traditional medical system.  my GP is finally referring me to a gastroenterologist - who may have the authority to set up IV TPN (total parental nutrition) but it could take as long as 6 - 8 weeks to get in to see one. until then, we have to foot the bill.




DR H's office has set me up with a local ND where i can receive the IV nutrients i need. i have to go twice a week. the IV vitamins cost 160 bucks a pop. the amino acids carry a much heftier price tag - initial quotes have come in at $860 for 6 IV bags not including the ND's charge to administer them. (we are trying to source them at a cheaper price as that is just not at all affordable). all totaled, we're looking at one hek of a whopping "grocery" bill. 


choke, sputter, argh.


the IVs take 2 hours each time plus travel time to and from the clinic. i'm exhausted and overwhelmed just thinking about it. i suppose i should look on this as a nicely imposed break but i feel stressed at the thought of the time away from home -after all, i have parker to care for and school to teach him.


choke, sputter, argh.


i guess on the flip side, and if i don't sleep thru these sessions, then this could mean i have some guilt free time to catch up on my blogging. or better yet, i could just stop vomiting. what a novel idea!



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