April 30, 2012

THE TRAVELLING PANTS


i have 167 unpublished posts sitting in my draft box. i have a lot of thoughts that tumble on to page and stories to tell but never quite enough time to edit them or finish them...and some i somehow just end up forgetting to publish.  i was sifting thru them this week and came across this one - it was nearly finished so i don't know why it never got published. after all, it's a pretty good story. and it's funny. and fun, funny and lighthearted have been a bit remiss here on my blog as of late...so i thought i'd switch gears and bring back some humor. this one's for you, JL :)


one of my favorite movies is 'sisterhood of the travelling pants'. i have my very own travelling pants. unlike the movie, my travelling pants are not shared among a group of women, they are not magical (alto' it is arguable that finding the "perfect" pair of pants is miraculous)...but  the origins of my travelling pants had an entire hotel staff buzzing with scandalous speculation...


my travelling pants story transpired way back in february of 2011.


heading to SF


the setting?  san fran.
the dilemma? i did not pack extra pants.
the heroine?  the travelling pants

the hero? my husband
the (UN)supportive characters? my boys
the antagonist? me
the protagonist? fluffy-fluffy

WHO?
fluffy fluffy - remember fluffy fluffy? 
(re-acquaint yourself with fluffy-fluffy here)




at the time, our story begins, fluffy-fluffy had been on a bit of a hiatus...i still struggled with fluid shifts, water retention and puffiness but it had been minimal since fluffy-fluffy had undergone a series of colonics (dare to read about that here). the fluid shifts (which resulted in up to an 8lb gain within mere hours) necessitated the need for stretch pants. after all, 8lbs in a day meant pants that fit the day before did not always fit the day after. i am totally serious. no exageration. i always packed stretch pants...or if not, at the very least i'd pack pants in 2 different sizes. 


but in the months leading about to this particular ill fated trip to SF, i'd lost a substanial amount of weight - 10lbs- due to a revolving door of flu/herx/barf/cycle. so even my regular size pants were a size too big...and even, in the unlikely event that i had a huge fluid shift while we were away - i figured the 10lb loss should keep me well within the normal pant zone and so i dared to boldly do what had not been done before...i did not pack extra pants. 
this is what iv supplies for 2 people for 5 days looks like

as much as i'd like to pin a ribbon of courage on for this brazenly brave move, i must admit, the lack of pant packing was more a matter of necessity - after all, suitcase space was at a premium. we were having to cart around and pack IV supplies for 2 as back then, both parker and i were on IV treatment. there really was little room to pack much of anything else...let alone, "fat" pants. my word, i did not even pack stretchy pants. in fact, the only pants i packed were pajama pants. i picked a pair of jeans to travel in and wear while we were away. they were roomy and comfy and a size too big considering i was down 10lbs.


JUST MY LUCK, THE MINUTE WE GOT TO SF, 
I BLEW UP AND BLEW RIGHT OUT OF MY PANTS! 



i really didn't want to spend my every sleeping and waking hour in my pajama pants. and yes, most of the time we are there, we are either at DR H's or in the hotel room anyway however, occassionally we try to venture out...and then it's only to target. so what does it matter anyway? it just mattered is all i can say.



"about the only thing that makes me feel better when i feel that bad is to hear, 
good evening, k-mart shoppers" 
                                                                                               ~(quote from movie secretariat)

(scratch kmart and replace with target or ross...and that may be about the most awesome quote ever.)

so graham took me and my ever burgeoning body to ross

i was expanding by the minute
no lie

i was desperate to find pants that fit but because i am cheap, i made a bee line right for the clearance rack
i may be cheap but that doesn't mean that i'm not picky and particular.
i would not settle for any old pair of roomy pants; the kind that would be disdainfully discarded after temporal usage
no, these pants must serve a purpose greater than being just "here and now" pants
then it dawned on me, 
i needed travelling pants
does such a thing even exist outside of movies?

i set forth with new resolve, despite my mounting discomfort, i persevered through racks of pants, stiffly shuffling down the isle, my rapidly swelling legs now ensconced like encased sausages in my offending pants

just as all hope was fading, i heard the fluttering of angel's wings and behold, there they hung in grandeur before me
super cool
super chic
super stretchy but not stretch pants
and
only 11 bucks

yet
they made me feel like a million bucks

i wanted to wear them out of the store. i nearly had to - as getting my original pants back on prooved quite the ardous task. i huffed and i puffed. i strained and i tugged and tugged and tugged to get my original pants back on. by the time i left the fitting room, i was sweating and breathless and exhausted...but oh so giddy and triumphant.

i had pants
not just any pants
i had found the most glorious pair of travelling pants. 


this is where the story should fade to black...but not in my world.

in the 20 minute drive it took to get back to the hotel, my swelling continued. i could literally feel my body expanding.

a terrifying thought flashed thru my mind, what if my travelling pants no longer fit?
i broke out in a cold sweat. but told myself i was being ridiculous.
my travelling pants fit perfectly 20 minutes ago
as a matter of fact, they had even been roomy

i did the stiff legged shuffle to our hotel room

mentally preparing myself for the workout ahead i expected it would be to pry my body out of my offending pants
i was dizzy and my arms ached by the time, i'd wrestled my offending pants down to my ankles...as i bent down to pick them up and fling them across the room, to my horror i discovered i no longer had ankles.
i had cankles!
yes! there was no discernable division between my calves and my ankles.
i gulped hard and with trembling hands reached for my travelling pants
i could not get them up over my cankles
how could this be?

this is not happening to me!
i would not, could not, will not let this be
and so
i tugged and yanked and swore under my breath, and i wiped my brow and yanked some more

and then i noticed IT
there IT was, as plain as day, 

a security tag attached  to my travelling pants!




you've got to be kidding me?! how could i have missed that? how did the store clerk miss that?
if it were not for my cankles,
my travelling pants might have gotten me arrested! 


i defeatedly wore my pajama pants to dinner that nite
who cares, who really cares anyway?!
i should just kick my ticketed travelling pants to the curb

but
i did not want to part with them

they were just way too cool
and
surely, the security tag issue could be easily remedied
after all, i rationalized, the cankle thing was truly just a freakish event of nature - it may have even been a God designed plan to keep me outta pants that could have got me arrested! 
no, no, no, my travelling pants are a hot commodity and i shall not part with them!

so the next day, i insisted graham take me back to ross so "we" could have the security tag issue handled
"we?" said graham, "how is this my problem?"



"my dearest husband, let me spell this out for you. it's either come in with me now and we can handle this together or you could end up having to bail me out of jail."



one look at me and he knew i had a point. 
i was freaking out.
i have tremors in my hands (thank you neuro-lyme) and when i am stressed, they become extremely pronounced...they shake so bad that someone could easily assume i must be super, duper nervous - 
i was convinced staff at the store would think i had somehow shoplifted the pants.

graham and the boys come into the store with me
and
we all converged on the guy at the returns counter
i explained what happened and trying in vain to keep my hand steady, i presented him with my reciept.



"these are not our pants." he boredly replied
"what do you mean these are not your pants?" i gasped "of course, these are your pants. i bought them here yesterday." 

he rolled his eyes and pointing at the offending security tag, casually muttered, "we get inventory from other stores. that tag is from the store those pants originally came from. you might have bought the pants here but that security tag is not ours. sorry, can't help you...unless you want to return them. you can do that."
"i don't want to return them! " i scooped up MY pants and held them protectively in my arms. "i just need the security tag removed. surely you can remove the tag." i stated incredulously
"nah. won't fit our machine."
i was steamed.
he was so non-commital and not remotely interested in helping me with the pants.

graham and the boys were losing their patience too...but for a different reason...they could not understand why i just would not let the pants go.

"mom, just RETURN the pants! seriously, who cares?" they grumbled

WHO CARES?

ARE YOU KIDDING ME?
guys just don't understand how rare it is for a woman to find pants that fit (ok so they didn't fit but they had and i knew they would again. and yes, i was being irrational) but when a woman finds a pair of pants in a style she loves and she likes the way she looks in them and they only cost 11 bucks? men cannot appreciate just how rare...how miraculous...that is.

i'm not giving up on the pants.
that is not an option.

so we left the store with the travelling pants in tow, security tag still attached, alarms blaring behind us, and me still stuck in my pajama pants

argh.
i sat around our hotel room in my pajama pants and stewed about it the the rest of the day.
concerned that he could spend the rest of the trip in pant purgatory, graham went into macgyver mode

he studied the offending security tag from several angles




after a few minutes, he grandly asserted that all he needed was a hammer and a screw driver
but
however, when one requests a hammer and a screwdriver from the front desk of a hotel, it raises a few eyebrows...and includes a call to maintenance and a polite inquiry as to what the items are needed for.
just my luck.

so there we stood in the lobby of a hotel, explaining the whole sordid tail of my pant issues to the staff behind the check in desk.
at least they were women.
of course, the story sounded totally sketchy....how could it not? 





i bought pants with the security tag still attached and the store i bought them from can't remove the tag. ummm, yeah, sounds a little far fetched...i was pretty sure they weren't buying it anymore than they were thinking i had probably not really bought the pants.
however, we procured the hammer and screwdriver and back in our room, graham freed my pants from their security detail and sprung himself from pants purgatory.




i leapt for joy. 
and now we are nearing the end of the story about the travelling pants

as you can well imagine, the story created quite a stir among the hotel staff

when we checked out of our hotel the last day, the front desk clerk asked me,
"so, are those the pants?"
"huh?" i blankly questioned. (ok. i know! i still had fairly significant short term memory issues back then.)
"you know, 'the pants?'" she said, "are those the pants you stole?"

only i would end up with infamous pants.
one day i may even frame them!

here we are now 15 months later and i still have the pants! in fact, i'm wearing them as i type this story...


i wear them. a lot. i've gotten a whole lotta mileage outta them.


they are my infamous travelling pants
and
i never leave home without them.



April 25, 2012

WHAT GOES DOWN, MUST COME UP


i am vomiting again - 
44 straight days.
thrown up every dinner and every evening since march 14.


seeing as i have a history of barfing, my docs have been trying to determine whether this was a new kind of vomiting or a reoccurrence of previous vomiting episodes. 


2 years ago, i had a seizures that triggered barfing...(read about it in a'barfing we will go). those vomiting episodes lasted nearly a year and were always accompanied by neurological symptoms when they happened. then this past august, i developed IIH - intracranial hypertension (fluid on the brain) which had made me barfing non-stop but was also accompanied with balance issues, hyperacussis and incoherence.(read about it in drain the brain


i had already been throwing up for 2 weeks when we saw DR H in CA at the end of march. he ruled out a return of IIH as being the cause of this latest vomiting. however, because the barfing had only recently started at that time, it was hard to readily identify it as any type of diagnostic GI condition. DR H was concerned that the underlying cause was a complication of my bartonella infection. (i was also dealing with some other bart related sxs). bartonella is notorious for wreaking havoc on the GI system. he put me on an intensive herbal protocol to fight the bartonella and we all hoped it would resolve the barfing. it helped my other bart related symptoms but the barfing (obviously) did not stop.


so ever since we've been trying to figure out what this was and what is the underlying etiology.  last week, my family doc determined that i've developed an entirely new barfing condition. it seems i've cornered the market on all conditions associated with barfing. this is now my third go around with a barfing related illness! and none of them flu related. who knew there could be so many reasons for barfing? 


what is it?


it's called "gastroparesis".


what is that?


'Gastroparesis, also called delayed gastric emptying, is a medical condition consisting of a paresis (partial paralysis) of the stomach, resulting in food remaining in the stomach for a longer period of time than normal. Normally, the stomach contracts to move food down into the small intestine for digestion. The vagus nerve controls these contractions. Gastroparesis may occur when the vagus nerve is damaged and the muscles of the stomach and intestines do not work normally. Food then moves slowly or stops moving through the digestive tract.' (wikipedia)


in layman's terms the upper portion of my stomach is paralyzed and unable to push/contract the food thru to the lower part where most of the digesting and breaking down occurs. seeing as it can't go down, it comes up. basically, i throw up several hours after eating - and the food is undigested (my apologies for the big gross factor here). i went on a "rice only" diet for 8 days and even then, i still threw it all up and it was completely undigested. i have no nausea - it just feels like the food sits like a brick in my upper abdomen...that builds all day and then by supper time, it finally reaches maximum capacity and, like clockwork, within 2-3 hours of eating supper, i start vomiting. i throw it all up. sometimes even food i had for breakfast shows up in the toilet bowl. once i start throwing up, it doesn't stop - i even throw up any fluids i take in after that. this is one of the worst parts, because i am HUNGRY and THIRSTY after spewing dinner and yet, i cannot keep anything in me once the vomiting starts - even tho' my stomach is empty by that point. if i eat anything like chocolate, have caffeine or fatty foods (even healthy fat eg almond butter) i vomit almost immediately (apparently these foods relax the sphincter that is between esophagus and stomach which stays shut under normal circumstances and keeps food from refluxing). 


treatment is just meds to help with GI motility. there is no "cure" but if the  underlying cause is bartonella or some other lyme-related infection, than i'm choosing to remain optimistic that it will resolve. my family doc started me on a med that will hopefully stop the vomiting (helps stimulate motility of GI tract). i started that last thursday and so far, it has not worked at all. in fact, in some regards my barfing has only intensified. the last 3 days, i have thrown up everything all day long. 


i had an phone appt with DR H's PA (Physician Assistant) yesterday and they are running some additional tests to rule out/rule in other possible etiologies. everyone's goal is (obviously) to quickly identify the underlying cause of the gastroparesis and treat it. one can only hope that will happen sooner than later. in the meantime, i hope i start responding to the motility meds because my family doc is talking about having to put in a PICC or PORT and put me on IV TPN if we can't stop vomiting and my weight loss becomes significant. 


after discussing lyme, our life & what's happened to parker & now gastroparesis and possibly IV TPN, my family doc asked me if i felt like "job" yet. (as in job from the bible) it was nice to have some acknowledgement of how bad things have been and are but no, i'm not as bad off as poor job but the truth is, i'm deeply discouraged. 


i am frustrated, irritable and exhausted. my family doc is surprised that i'm still functioning. i don't know how i'm still standing. the exhaustion is ummm, exhausting. yet i have to adapt. i've got to work around it in order to do what needs to get done. i have pick myself up off the floor, wipe my mouth and get on with whatever needs to be done. i simply don't have a choice. this sucks. it's a major downer. and i have to hope that one day the downward trajectory of our life will turn around. after all, what goes down eventually must come up...one day, it'll be me and not my food.













April 22, 2012

WHAT THE IDSA WON'T TELL YOU....PT 2


before i get into the meat of today's post, i wanted to highlight a few important issues about the IDSA guidelines on lyme.
  • The IDSA guidelines were written by a panel of 12 Lyme disease researchers and clinicians, and dissenting opinion was ignored in formulating the guidelines [DONTA S, PERS. COMMUN.,2004]
  • The IDSA guidelines do not conform to current standards of evidence based medicine. Many of the IDSA recommendations for diagnosis and treatment of Lyme disease were contingent on the weakest Category III evidence. 
  • The IDSA panel members that wrote the guidelines for diagnosing and treating Lyme disease continue to rigorously defend their stance that "Lyme is hard to get and easy to treat" and that "Chronic Lyme disease does not exist." 
i am continuing my series on what the IDSA won't tell you. i thought it simplest to continue addressing the issues i have with dr auwaerter (who appeared on the dr phil show) and what he has to say about chronic lyme... or more accurately, what he WON'T say about the results of the IDSA studies on Lyme Disease. my friend, Christine H, did the work for me on this post. (thank you Christine!) she wrote in to the dr phil show with an excellent letter that outlines the results of the IDSA clincal studies...ones that dr auwaerter was involved with. yet, he (and the IDSA) continue to report and cite only the parts of the studies that back up their THEORY that Chronic Lyme Disease does not exist. Christine has done a bang up job of shedding light on the truth and with her permission, i am posting her letter on my blog.




Thank you Dr Phil!!

Dr Auwaerter claims that chronic lyme disease does not exist. In his opinion the fact that antibiotic therapy does not improve symptoms provides evidence that chronic Lyme disease is in fact post Lyme disease. Post Lyme disease implies that the Lyme bacteria have been totally eradicated however residual symptoms remain. He uses 4 studies to back up his claims (8).

In regard to the 4 studies that Dr Auwaerter uses to back up the claim that chronic Lyme disease does not exist:


First off, the 4 studies that Dr Auwaerter speaks of (8) involve clinical trials with the antibiotics - ceftriaxone, doxycycline or some combination thereof (1, 2, 3, 4). One of the studies that Dr Auwaerter and the IDSA gang like to cite involves two sets of clinical trials that were undertaken in the late 90’s by Klempner et al. using the antibiotic combinations I have listed previously. 


Klempner et al state that “Persistent symptoms have been reported both in patients who are seropositive for antibodies against B. burgdorferi and in patients who are seronegative. Although the cause of persistent symptoms has not been determined.....” 


The authors conclude that “There were no significant differences between clinical responses of patients who received intravenous and oral antibiotics for 90 days and those of patients who received placebo.” (1) 


These results serve to support a previous study authored in part by Klempner in 1992, in which spirochetes were isolated in 11 out of 12 ceftriaxone treated co-cultures of fibroblast protected spirochetes (5). The authors state that “Fibroblasts were able to protect the spirochete from the action of ceftriaxone in a medium that permits growth of extracellular organisms.” and “the intracellular site would protect the spirochete from the hosts immune system” (5).
These studies authored by Klempner et al have NOT proven the existence of “post” Lyme syndrome as THEORIZED by Dr Aerwarter and the IDSA. Rather, these studies have proven the existence of ceftriaxone-refractory, immune-system-evading, chronic-Lyme disease in the presence of fibroblasts and possibly other human cells. While the 1st study provides evidence of a mechanism of Lyme disease persistence (1), the 2nd study by the same author purports that “the cause of persistent symptoms has not been determined” (5). Did he forget that he authored the previous paper? 


The second study cited by Dr Auwaerter (8) and the IDSA members in order to refute the notion of chronic Lyme disease is authored by one of the Lyme communities own researchers and again involves failed therapy with ceftriaxone. . Dr Fallon et al conducted clinical trials of IV ceftriaxone therapy for Lyme encephalopathy. While the authors did observe measurable improvements in their patients, relapse was common upon antibiotic withdrawal. (3) Again, ceftriaxone treatment failure was observed. Fallon et al concluded that “Treatment strategies that result in sustained cognitive improvement are needed.” 


The STOP-LD Study written by L.B. Krupp et al, the third study cited by Dr Aertwarter (8), adds to the growing proof that ceftriaxone is ineffective for eradicating Lyme disease in humans. This study again assesses the outcome of ceftriaxone therapy in LD patients and reports on the data collected from the patient 6 months later. The only positive finding they report is improvement in fatigue.

And finally the fourth study that Dr Auwaerter refers to (8) is the IDSA Guidelines itself. Because of the IDSA’s tendency to accept expert opinion over high quality factual evidence (6, 7) their recommendations should be considered but not heavily relied upon.


Dattwyler et al compare a 14 day treatment regime to a 28 day regime of ceftriaxone in LD patients (9). Their results were reported as being cured, improved or treatment failure. 76% of the LD patients that received 14 days of ceftriaxone and 70% of the 28 day treatment group were considered to be cured (9). In other words 24 of 100 people treated for 14 days for Lyme disease with ceftriaxone were not cured according to their criteria as were 30 of 100 people treated for 28 days. I sure wouldn’t want to be one of these 54 people that were not cured!! Especially if I had an IDSA approved Dr treating me!! It is kind of odd that in this study there are more people in the 14 day group reporting as cured then in the 28 day group. Either way this is another study that plainly illustrates that ceftriaxone therapy is responsible for several treatment failures.

Ceftriaxone did not improve symptoms in 129 Lyme disease patients in a study conducted by Kaplan, Trevino, Klempner, Weinstein et al. Their final remark “Additional antibiotic therapy was not more beneficial than administering placebo” (10) is somewhat misleading in that to be correct it should have read more like “Additional ceftriaxone therapy was not more beneficial than administering placebo”.


Any Lyme literate Dr or patient for that matter knows that ceftriaxone and doxycycline alone are not curative for Lyme disease. We have already read the studies!! We use antibiotic combos that include cyst/biofilm busting antibiotics such as tinidazole or flagyl and yet I have never seen the IDSA gang do any clinical trials involving these abx in combination with..say doxy. Come on IDSA, get with the program!! You are seriously falling behind here!!

It becomes crystal clear to me that denying all antibiotics in any combination is NOT based on any solid research that Dr Auwaerter, the IDSA gang or any of their supporters have undertaken or presented thus far. This revelation begs the question;
"Exactly how did the IDSA and Dr Auwaerter come to the conclusion that antibiotic use for chronic or pretreated LD is ineffective thus chronic LD does not exist?" 


There are only 2 answers to this question: 
Either they used poor scientific skills to evaluate their research by not considering other antibiotics 
or 
they did truly consider the evidence and decided to try and bend the truth to suit their agenda. 


Either way they don't look very good thru my eyes.


1) Klempner MS, Hu LT, Evans J, et al. Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease. N Engl J Med 2001; 345:85–92.
2) Wormser GP, Dattwyler RJ, Shapiro ED, et al. The clinical assessment, treatment, and prevention of Lyme disease, human granulocytic anaplasmosis, and babesiosis: clinical practice guidelines by the Infectious Diseases Society of America. Clin Infect Dis 2006; 43: 1089–34.
3) Fallon BA, Keilp JG, Corbera KM, et al. A randomized, placebo-controlled trial of repeated IV antibiotic therapy for Lyme encephalopathy. Neurology 2008; 70: 992–1003
4) Krupp LB, Hyman LG, Grimson R, et al. Study and treatment of post Lyme disease (Stop-LD). A randomized double-masked clinical trial. Neurology 2003; 60: 1923–30.
5) Kostis G, Peacocke M, Klempner MS. Fibroblasts protect the Lyme disease spirochete,Borrelia burgdorferi. From ceftriaxone in vitro. JID 1992:166
6) Khan AB, Khan S, Zimmerman V, Baddour LM, Tleyjeh SM. Quality and Strength of Evidence of the Infectious Diseases Society of America Clinical Practice Guidelines. Evidence in the IDSA Practice Guidelines -CID 2010:51 15 November: 1147
7) Lee DH, MD; Vielemeyer O, MD. Analysis of Overall Level of Evidence Behind Infectious Diseases Society of America Practice Guidelines. Arch Intern Med. 2011;171(1):18-22. doi:10.1001/archinternmed.2010.482
Auwaerter PG. Point: Antibiotic Therapy Is Not the Answer for Patients with Persisting Symptoms Attributable to Lyme disease. Antibiotics for Post–Lyme Disease Syndrome • CID 2007:45 (15 July) • 143
9) Dattwyler RJ, Wormser GP, Rush TJ, et al. A comparison of two treatment regimens of ceftriaxone in late Lyme disease. Wien Klin Wochenschr 2005; 117:393–7
10) Kaplan RF, Trevino RP, Johnson GM, Levy L, Dornbush R, Hu LT, Evans J, Weinstein A, Schmid CH, Klempner MS. Cognitive function in post-treatment Lyme disease Do additional antibiotics help? Neurology. 2003 Jun 24;60(12):1916-22.

April 18, 2012

WHAT THE IDSA WON'T TELL YOU...PT 1



"Lyme disease represents a growing public health threat. The controversial science and politics of Lyme disease have created barriers to reliable diagnosis and effective treatment of this protean illness"
                                                               ~DR R STRICKER




The political battle over Lyme disease features two polarized Medical camps: 


IDSAInfectious Disease Society of America; responsible for writing the guidelines that currently govern the diagnosis and treatment of Lyme Disease. the IDSA adheres to the philosophy that the disease is ‘hard to catch and easy to cure’, and that chronic infection with Borrelia burgdorferi, the spirochetal agent of Lyme disease, is nonexistent. 


ILADS - International Lyme and Associated Diseases Society; a multi-disciplinary medical society, dedicated to the diagnosis and appropriate treatment of Lyme and its associated diseases. ILADS views Lyme disease as an under reported and growing menace that often fails to respond to standard antibiotic therapy, resulting in a chronic debilitating infection that requires prolonged antibiotic treatment


the IDSA guidelines on the diagnosis and treatment of lyme disease are rife with controversy and conflicts of interest. through medical collusion, faulty testing and fraudulent science the IDSA and the CDC have managed to keep a tight rein on ensuring the truth is buried.


the IDSA call their guidelines "evidence based" yet they suppress the results of their own trials and studies that actually provide scientific evidence that flies in the face of and is contradictory to their own guidelines. furthermore, those results were occluded when writing the guidelines.



WHY, as canadians, should we care about IDSA guidelines? after all they are american. 

  • because canada has blindly adopted the IDSA guidelines as their own and uses them to deny treatment to patients infected with lyme.
HOW exactly does the controversy - over testing and diagnosing lyme - spill over into canada and impact canadians? (there are several areas, but i've highlighted the following in this post)

  • the CDC and IDSA , continue to staunchly insist that the Lyme enzyme-linked immunosorbent assay (ELISA) is the ‘preferred method’ to diagnose Lyme disease due to its ‘sensitivity, adaptability to automation and ease of quantification (counterpoint) . therefore, in both the USA and canada, the ELISA is the standard used to either exclude or include the diagnosis of lyme disease. yet, multiple clinical trials and studies report the ELISA is inaccurate. for example, the American College of Pathologists used human sera to test the accuracy of 516 different laboratories ELISA tests nation wide, the overall accuracy was only 45%. 



it is quite a daunting task to delve into all of the plethora issues at hand. it's going to take multiple posts to shed light on the inaccuracy of the testing, disputed treatment lengths, conflicts of interest, flawed guidelines, vested interests of insurance providers, and the role that economics play into all of it. even then, it'll just be the tip of the iceberg. at best, i will only scratch the surface. that being said, i'm rolling up my sleeves and ready to tackle the issues at hand.


WHY, aside from the obvious impact of the controversy of lyme on my family, do i feel compelled to shed light on what the IDSA won't tell you? the answer is two-fold;


FIRST - because i am ABLE. 

prior to my diagnosis, i was unable to count to 10, remember how to sign my name or recall the names of my kids.  i still had severe cognition difficulties after receiving the 3 month course of IV treatment recommended by the IDSA guidelines which suggest that further treatment would be of no benefit as stated in the Clinical Practice Guidelines of the IDSA;

"Prolonged Antibiotic therapy has not proven to be useful and is not recommended for patients with chronic subjective symptoms after recommended treatment regimens for Lyme disease." 

simply put, i am ABLE because long term IV abx treatment - beyond the stringent IDSA guidelines - restored my cognitive abilities.

SECOND - the appearance of the IDSA representative, dr paul auwaerter, on the dr phil show, and his denial of the existence of chronic lyme prompted me to do a bit of digging on this doctor. the results of my subsequent investigations have left me outraged.  


here's a jaw dropper, dr paul auwaerter was part of a research study at johns hopkins - Two-Year Evaluation of Borrelia burgdorferi Culture and Supplemental Tests for Definitive Diagnosis of Lyme Disease - and the conclusion of this study?


"In accordance with the results of other studies, simple application of acute-phase serologic tests was very insensitive (45%)"



which leaves me wondering....
if you don't have an accurate test that can identify the infection in the acute (early) stages of the disease, how in the world can he (or the IDSA) adamantly insist that a persistent form of the infection does not exist?





the IDSA's own studies have concluded the ELISA is inaccurate. yet, inspite of the findings of their own studies and controlled-trials the IDSA, NIH, the USA CDC and our own canadian BCCDC continues to rigorously defend that the ELISA is the 'gold standard' and 'state of the art' testing for lyme.


indeed, it has been my own personal experience that the (seemingly militant) enforcement of the IDSA's testing protocols and treatment guidelines in canada culminated in forcing me (& other desperately ill patients) to seek (emergency) treatment for my lyme infection in the USA in may of 2008.


the following news clip is from may 2008;








sadly, little has changed since 2008.

here we are 4 years later, and canadians are routinely denied treatment based on the same faulty diagnostic testing protocol and flawed treatment guidelines.


here we are 4 years later, and we're re-living the nightmare of this denial with our son...


the medical establishment has concluded that our son can't possibly have lyme because his canadian ELISA was negative. furthermore,  they continue to subscribe to the IDSA's widely held opinion that "chronic lyme disease does NOT exist". 


and it is based on that "evidence" and "opinion", that they deemed our son's medical treatment unnecessary. they took it one step further when they, in a shockingly, horrifying twist of events, interfered with his USA treatment (of which is prescribed by his board certified american physician who has been his primary care physician since 2010). the result? the removal and blockade of our son's USA prescribed IV treatment.


our family's experience points to an incredibly troubling and terrifying reality - the climate in Canada surrounding the diagnosis and treatment of lyme disease has only grown more hostile and in our experience, citing the IDSA guidelines, they will override the prescribed treatment of another physician.


and that is why we, as canadians, should care about what the IDSA won't tell you.


more to come - stay tuned...








excerpts and information from following resources:
http://www.lymemed.nl/discussie/point&counterpoint.pdf
http://www.canlyme.com/labtests.html
http://www.personalconsult.com/articles/underdiagnosed-lyme-disease.html
Clinical Practice Guidelines of the IDSA
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1248466/







April 15, 2012

DEAR DR PHIL

i am also posting a clip from 'after the show' segment where dr phil acknowledges that time constraints impacted the show's ability to address all relevant issues that surround the lyme controversy. based on what he says in this clip, it is clear to me that he gets it. one can only hope and pray that he sees the need to do address these issues in another show.


speaking of another show, i am asking everyone that finds their way to this post, to please send a comment to dr phil - thank him for doing a show on lyme and ask him to do another! and to everyone and anyone who has ever said, 
"I don't know how to help your family." 
this is a very easy way for you to help. all that is needed is a simple, 


"I know someone with Chronic Lyme Disease. It is real. It exists. Thank you for bringing light to this debilitating disease."


if you are on FB, than you can post your comments on dr phil's FB wall or for those not on FB or for those who'd rather send something privately, that can be done thru his website - click here to go there.


here's the after show clip and below that is the letter that i wrote to the show. 






Dear Dr Phil

I wanted to thank you for airing the show on chronic lyme disease. Our family has been deeply affected and profoundly changed by this disease. Both myself and my 2 sons have chronic lyme.

Our youngest son fell ill at the age of 9. He went from perfect health to wheelchair in 8 weeks. Over the next several months, he developed severe bone pain, fatigue, air hunger, body disregulation, neuro-psychiatric symptoms, twitches and full body tremors that would last 4-6 hours at a time. Within 4 months of becoming ill, and at his worst, he was unable to walk, feed himself or articulate his feelings. Despite numerous hospitilizations, countless tests and seeing a mulitude of specialists, doctors could not figure out what was wrong with our son....but they were adamant that he could NOT have lyme.

We live in Canada and the Canadian medical community violently protests the existance of chronic lyme disease (indeed some insist that it is impossible to even contract the disease in this country). It took another 2 months of further deterioration, before our son was finally diagnosed with chronic lyme. The diagnosis came from a highly esteemed Lyme Literate American doctor. Under his care, our son has made great  strides in his recovery and many of his most debilitating symptoms were resolving with long term IV antibiotic treatment.

Despite the obvious improvement, Canadian doctors refused to partner with our USA LLMD. In fact, not only did Canadian doctors fail to care for our son, they recently made the unprecedented (and unethical) move and interfered with our son's American treatment (that we pay for). They have blocked his access to his medically necessary IV treatment.

We are currently having to fight a medical system that is bound and determine to hold on to their archaic mindset about the diagnosis and treatment of lyme. Their ignorance is causing untold suffering in our son. We are passionate and determined in our fight for his right to recieve this vital medical treatment because myself and our eldest son have experienced first hand that long term antibiotic treatment IS successful.

After 18 months of aggressive long term therapy, our eldest son (19) beat the disease. He has now been well and symptom free for 1 year. My own battle with the disease is not over but after 4 years of IV treatment, I consider myself in the "recovery phase" now.  

Read more about our son's fight here: genesis 50:20 and living in a sick world

Dr Phil, I am imploring you to do a follow up show. There is so much more that needs to be told. There is so much relevant scientific evidence that continues to be suppressed by the IDSA. It needs to be brought out into the public arena.

Dr Auwaerter (& the IDSA in general) continue to back up their denial of chronic lyme disease based on their "double blind trial" they used for determining the diagnostic & treatment guidelines for lyme. What they fail to reveal is that their trials, at best, were based on weak evidence and reached weak conclusions that have been scientifically disproven since.

Furthermore, if you look at the research and peer reviewed literature authored by academic ILADS physicians and researchers, their reviews of this IDSA trial reached very different conclusions. In fact, a careful exam of the results of the IDSA "trial" reveal that short term antibiotic treatment is ineffective. Based on the same evidence, ILADS concluded the IDSA trials show that lyme can be difficult to diagnose, can be severe, can be difficult to treat and can persist for years. As a result, ILADS physicians and researches responded with guidelines that address the issue of both early lyme and the persistent infection that leads to chronic lyme disease.

ILADS used a "grade" system to write their guidelines. The grade system is a formal, organized way to review data. With the grade system there is a lot more evidence, high quality evidence, reviewed than is presented in the 'trials' run by the IDSA.

(for more information please go to ILADS.ORG)

Dr Phil, the lyme community needs a hero! My son needs a hero! All it takes is one highly esteemed person with an international platform to bring the TRUTH about the debacle of lyme to the forefront! Dr Phil, you fit the bill!
Will you be our hero?

April 14, 2012

IN CASE YOU MISSED IT...

i am posting the episode on lyme that aired on dr phil on friday (april 13). a fellow lymie was able to put the lyme portion of the broadcast (minus commercials) into one 18 minute clip.


i am incredibly grateful that dr phil stepped up to the plate and acknowledged lyme disease and that it does indeed exist as a persistent, chronic infection.


i believe the show was well done albeit there was not near enough time dedicated to it! it would have been nice to have the full hour time slot but nonetheless this is a huge leap forward. one step at a time or one segment at a time. unfortunately, the small amount of air time did not come close to being able to delve into the multitude of issues surrounding the debacle of lyme disease. there are several important issues that were either not addressed or were only too briefly touched on. i will be addressing some of those issues in the days to come.


i will very briefly touch on one issue right now. as a society, we are schooled to place great value in the academia associated with medicine.  i understand that Dr Bahkta was on the show because she is treating (successfully treating, i might add) dr phil's staff person. as a mainstream MD and frontline physician who specializes in autoimmune diseases, her clinical experience in treating chronic lyme patients far outweighs the experience of the IDSA's representative, dr auwaerter. (who clearly must have none given that he insists the disease does NOT exist.) my issue is not at all with dr bahkta's expertise. my issue is that impressive medical titles somehow hold more weight and credibility with the general public than "just" an MD with an integrative practice. i am considerably bothered that dr phil did not have one of the many LLMDs on (and there are many) that have just as impressive sounding credentials as dr auwaerter. 


that being said, i applaud dr bahkta for not only having the gumption to treat patients outside of the IDSA's flawed guidelines but for having the courage to publicly face off with the IDSA. wowzers. i have no doubt she will take major heat for that. she may quite possibly even come under attack by licensing boards. after all, nearly all LLMDs do at some point.


i am encouraged that lyme was finally given a national platform. i believe it speaks volumes that dr phil made arrangements for the young lady featured to be treated by dr bahkta as opposed to dr auwaerter....despite his impressive credentials. in doing so, dr phil sent a clear message -


chronic lyme DOES exist and long term treatment works


god bless you dr phil.


here's the show, i hope you watch it.


April 12, 2012

LIVING IN A SICK WORLD


parker continues to suffer as a result of the canadian medical community putting lock, stock and barrel on his IV treatment.


since his IV stopped, his symptom flares have gotten progressively worse and his suffering has intensified. he is still much better than he was, say a year ago, or before starting treatment, but his decline since february 3rd has been significant. the extreme episodes of debilitation that he is once again experiencing had not been present since last spring.


carried in dad's strong arms last week
too weak & too much pain to even crawl up the stairs 


he does still have days where he experiences periods of feeling "okay" and is able bodied. we keep tabs on his pain levels by using a scale - "0" is no pain, "10" is worst pain ever. parker has not been a "0" since prior to getting ill in september 2009. he is never not in pain. and there is no relief. his pain is intractable - meaning it responds to no pain interventions or medications. when his pain levels exacerbate and hit 7 and above, there is no relief. those are the times when he must dig deep and ride it out. that is all any of us can do.



"the beauty of the soul shines out when a man bears with composure one heavy mischance after another,
not because he does not feel them, but because he is a man of high and heroic temper."
                                                                                         ~aristotle


those are the times, as we helplessly watch him writhe in pain and listen to his moaning and screaming that our hearts are ripped so violently from our chests it seems impossible we'll ever heal from the residual trauma that leaves behind. there are no words to describe what it is like to watch your child suffer and know there is NOTHING you can do to relieve that suffering. during those times, as counterproductive as it is, you still do or try anything that could possibly alleviate the suffering. i have lost count of the times, i've collapsed in a weeping, sobbing heap outside the bathroom door pleading with God to bring some sort of relief to my boy as he lies screaming in a medicated bath behind the door.


needless to say, he has had to learn to cope with an extraordinary amount of pain. as a result, as soon as his pain levels drop below a "5", he is able to make the best of it and do stuff. 



parker at a pain level "4" enjoying pool at our hotel in california
an hour later, he was in bed moaning in agony


his ability to remain active is impacted by his fatigue and pain levels. at any given time, and for no apparent reason, his pain level can go from a "5" to a "8 or 9". sometimes his level "5" lasts long enough to be active for an hour or two, other times, it only lasts for 5, 10 or 15 minutes. since IV stopped, his daily pain levels have increased and fairly consistently hover around a "7". as opposed to when he was on IV and they generally were at a "5" or less. his stamina has significantly decreased as well, so he may be at a level "5" pain but no longer has the energy to be active. whether due to pain or fatigue, he is more often than not, reliant on his wheelchair again. 


lego is one of parker's passions
we found a cool lego store in san jose during this trip


we were recently in california to see DR H. the results of his exam and assessments on our son reveal (among other things), a swollen spleen. the spleen can be considered as two organs in one; it filters the blood and removes abnormal cells (such as old and defective red blood cells), and it makes disease-fighting components of the immune system. currently, parker's spleen is taking a double hit;


first, since IV was forcibly withdrawn, parker's body (and organ systems) are struggling to cope with his increasing levels of infection. the IV meds targetted his lyme infection. this helped alleviate the stress of that infection on his body and allowed it to focus its energy on fighting his babesia infection. 


secondly, babesia is parker's 'primary' infection. lyme aside, babesia on its own puts a great strain on the spleen. babesia is caused by a parasite that invades and destroys the red blood cells, sometimes faster than the body can replace them. 


the symptoms that babesia causes in parkers body are severe seizure like tremors, twitches, air hunger, migraines, body temperature disregulation, profound fatigue, cognitive disfunction, intense and intractable bone pain, facial rashes, and a whole host of additional debilitating symptoms.

we are clearly needing to put some sort of treatment plan in the works for parker. this is becoming increasingly more difficult as recent events lead us to believe that the medical institution responsible for blocking access to his IV treatment, is now attempting to block access to all aspects of his USA treatment. somehow and someway, we and his USA medical team, have to work within the restrictive and unwelcome parameters that are being forced upon us...parameters that have been implemented by a group of physicians of which most have never examined parker or had him as a patient. one doctor saw parker only twice. during the first visit, he was only given a cursory exam. (weight, height, blood pressure, quick listen to lungs and palpitation of his tummy). upon completing the bare bones of this basic exam, the doctor declared,
"well, he looks fine to me." 


the rest of that appointment and the subsequent follow up consisted primarily of this doc advising us to pull his picc line and stop ALL his abx treatment. i suggested the doc (a pediatrician) was stepping out side of his/her area of expertise. i queried as to what his/her knowledge or experience was with treating lyme.


he/she admitted they had no experience treating it and that they actually knew very little about the disease itself. 




it is only based on this doc's opinion that "chronic lyme does not exist" and because the insitution that employs this physician shares the same opinion, that they moved to block access to our son's crucial medical treatment.


it boils down to a matter of opinion and an unwillingness to re-consider that opinion even when presented with scientific evidence that flies in the face of that opinion.
nothing more. 
nothing less. 


this opinion puts our son's recovery and very life in jeopardy.


we live in a sick world.


furthermore, a soon as this doc (and group of physicians involved) had confirmation that parker's picc line had been removed, he/she fired him as a patient. yes. they no longer wish to see parker as a patient. they are of the opinion, and i quote them, 


"the removal of his picc line fulfills our duty of care. if he becomes ill, you are welcome to bring him the the ER."


if your jaw just dropped over that, trust me, you are not alone. i had to read and re-read that letter 10 times before i believed that what i was reading was really what i was seeing.


we live in a sick world.





April 11, 2012

TERM(INAL) 2

we were recently in california. and it was not for a holiday. we try to do a few fun things while we are there but it's no holiday. it never is.

waiting in the airport terminal
this was the first trip i've made in 4 years with no iv meds in tow. it was awesome to be able to travel light(er). actually, it gave me plenty of extra room to pack parker's text books and work books. he was not impressed. he got no break from school over spring break and no break while we were down south. which sucks. i agree. it sucks for me as the teacher just as much as it does for him as the student. i would have loved a break just as much as him (maybe even more!) but here's the problem, since his IV treatment was forcibly stopped, not only has there been an intensifying of his physical disabilities and pain but his cognitive abilities have significantly suffered as well. 




it is as if his brain walked out the door. it has been like pulling teeth to help him comprehend and tackle his school work. certainly, the trauma that befell us on feb 3 when the attack began, threw us into an emotional tailspin. to put it bluntly, all hell broke loose. the sheer fear and shock of it all knocked me out of commision as a teacher for several weeks.  it's awfully hard to focus when you are terrified your child is about to be ripped from your home. and about the time i was able to gather my wits about me, parker had been without IV long enough that the full weight of the consequences of being without it were bearing down on him. 


that has been maddening. frustrating. upsetting. etc. in term 1 he was able, thru hard work and determination, to accomplish so much. he successfully completed all 4 core subjects. his accomplishments amazed his distance ed teacher - (as blogged about in "school of hard knocks" post) and he was meeting the expectations of all 4 core subjects. the longer he was on IV treatment, the more his brain came back to him. it was not such a struggle to concentrate or to retain information or to stay awake. and as the months went on and his stamina increased, he was able to work independently and for longer periods of time. it was exciting to see the improvement. it was not without great perseverance on his part - there were days his pain levels were high enough to require the intervention of morphine - and yet, even then, he soldiered on. 


this term, term 2, started strong but once his IV treatment was turned on its ear we barely limped across the finish line. i watched with helpless despair as his brain was hijacked by the infection. he's fought it, he's worked at it - and the pay off? he's aware he's not getting it again which results in tears and pencils snapped in half. last week, we had our term 2 wrap up meeting with his distance ed teacher. her comments reflect the change, "he is working towards meeting expectations. despite set backs, his attitude towards his studies is to be commended."
working hard on ancient greece project
BRAVO!
(the lack of shirt has to do with body temperature dis-regulation)


his tutor and his OT (occupational therapist) have also noted the recent decline.


now spring has sprung and with it term 3 has begun. i sat down with the distance ed and resource teachers this past week. we're having to re-vise my son's IEP (individualized education plan) and on everyone's mind was what about next year? grade 8. 


of course, my son desperately wants to go back to a public school. yet, he knows and we all know that it is highly unlikely that he could physically meet the demands of a 6 hour school day.  let alone, cognitively take on a full course load. so what does one do? it would be ideal if we could integrate both the public and distance ed programs. (eg - he could attend public school and do a course there and do the rest of the subjects at home.) unfortunately, this is not an option because the distance ed school is not in our city/school district. students can't be enrolled in 2 different districts. unfortunately, there are no distance ed programs available in our district and there appear to be few workable options period. that is why we are currently enrolled in the program we are now. our school district literally shoved us out the door with a, "sorry, we don't have resources available to support your son." which was followed by the suggestion that he attend school in another city. we've been told we'll need to fight this at the school board level in our district. like i needed another battle on my hands.


we live in the wrong city for educating our son.

we live in the wrong country for securing medical treatment for our son.


i'm so frustrated with running into road blocks. some days i feel like i have to fight at every turn in every area of my life. and i'm tired. so. very. tired.









April 10, 2012

THIS FRIDAY, BE AWARE

this friday, april 13, 2012, the DR PHIL show will be airing a broadcast on lyme disease. it is called "deadly consequences". this is exciting for the lyme community. from what i have learned, dr phil's interest in the lyme epidemic was ignited when one of his staff contracted the disease.


the show has already been taped and the folks appearing on it are a LLMD, dr  chitra bhatra, and 2 lyme patients; brooke landau - a san diego weather broadcaster - (click here to watch a synopsis of brooke's story) and stephanie vostry, a former model who is battling chronic lyme. of course, a representative from the IDSA will be present. i would hazard a guess that he will be there to defend the IDSA's premise that chronic lyme does not exist. after all, the IDSA guidelines are the reason behind the controversy over diagnosing and treating lyme disease.


the following video gives a bit of background into the reasons behind the controversy.






it should be an interesting broadcast. i hope that it will do justice to the injustices that lyme patients are suffering world wide. of course, one never knows how these things will go. let's hope that dr phil sniffs out the deception and exposes the truth.


i am encouraging everyone out there to tune in...
yes, i hope that this helps to push the truth into the light, i hope that it accurately depicts what it is like to live with this illness, but equally as important is that the message of lyme being an epidemic reaches those that are at risk of contracting the disease. 
and who is at risk? everyone. everywhere.


whether or not canada wants to acknowledge that we have an epidemic or not, does not change the fact that people are contracting the disease at an alarming rate.


lyme is in Canada.
lyme is in BC.


people are being infected at an alarmingly increasing rate.


it is under reported and under diagnosed because physicians are told to rely on the results of an inaccurate and faulty test.


it is under reported and under diagnosed because physicians are not being adequately trained to recognize the clinical signs and symptoms.


given that i'm immersed in the lyme community, one might suggest that my belief that there is such a high incidence of it is slightly skewed. yes, it is true, i know a boat load of chronically infected patients. the numbers are sadly staggering. and yes, i meet those folks because of my involvement in the lyme community and my awareness is heightened as a result... however that does little to explain the numbers of people that we know that are in our "non lyme" circle of friends that have recently contracted the disease.


a gentleman in our bible study. contracted lyme in steveston area of richmond. he had the classic bullseye rash. tested with BC Elisa test TWICE. BOTH tests returned negative results. 


a child in avery's school contracted lyme this past summer - either in richmond or ladner. had classic bullseye rash. 


a former co-worker of grahams. contracted lyme in squamish in late summer. bullseye rash. tested with BC Elisa test TWICE. BOTH tests negative.


a friend's friend contracted lyme in her backyard in the terra nova area of richmond. classic bullseye rash. BC test returned negative result. went undiagnosed for 3 months. as a result, developed late stage neuro-lyme. 


another friend of a friend contracted lyme 2 weeks ago. in a ravine behind her home in langley. bullseye rash.

in all 5 cases, i was contacted by friends/or families and asked what abx should be used to treat and for how long as the doctors their loved one had seen did not know.


these folks are fortunate as their infections presented with the classic bulls eye rash. less than 50% of folks that are bit by an infected tick get the bulls eye rash. in most of these cases, doctors could not easily or readily identify this hallmark rash. 


if you have a bullseye rash you have lyme. period. it is a clinical slam dunk. however, of the 3 cases tested - ALL rendered negative results. 2 cases were each re-tested and ALL tests were negative. if they had relied on the test results as a means to diagnose and treat their infection, (which is most often the case) they would undoubtedly developed full blown late stage neurological lyme disease. unfortunately that is the consequence of 1 of the 3. thankfully, the other 2 knew better than to trust the test results and as a result of their awareness were able to advocate for proper treatment.


there are many more stories i could share. but these were the ones that have readily jumped to mind. these are my 'non lyme' friend stories. if it can happen to them, it can happen to you. 


please educate yourself. 
your government isn't going to do it for you. 


please be aware. 
your physicians are not.


please watch dr phil on friday, april 13.
it just may save your life or the life of someone you love.


and while you are watching, please remember that this is the nightmare that my family lives with. denial of lyme forced us to seek out of country medical care. and now, because of interference from the BC medical community, our son's USA treatment has been compromised and we're having to fight for the right to get him the life saving treatment he desperately needs to battle this insidious disease. i hope the dr phil show reveals the truth behind the denial and accurately depicts the horror of what lyme does. "seeing" it might give you a better understanding of what it looks like to live with this disease. i hope it does. we need the support.