I understand, why people want to, or do, take themselves out, choose to end their lives, their suffering, because of this thing, Lyme disease and its co-infections like Bartonella and Babesia, to name just two (see ref. 1). I understand, why it is a viable solution, to end the degradation, dismissal, derision, disrespect, and disdain, of not only those working in the sick-care systems (worldwide), but even of folks in their closest circles, and even of those who also suffer, or have suffered, these illnesses. For the handling of these illnesses, the myriad misconception and full-on ignorance of them, in both the mainstream and Naturopathic communities, has created multi-systemic (political/medical/personal) discord, disagreement, controversy, mis- and non-diagnosis (2) & (3) and I understand, for I am one of them.

I understand, because the disease(s) in and of themselves and the havocs they wreak on every system of the human body are brutal, serious, life-altering, often crippling, potentially deadly, and they manifest differently in different humans, depending on if/when they were diagnosed, if, they/we were treated, and with what, and when.

I understand, for just like me, they are skilled and adaptive survivalists, these bugs; transmuting transformers, and they play hide’n seek with the adeptness and skill of a lion stalking its prey in the Serengeti. They are beasts, for real-for real. Personally, I have an ever-changing array of  symptoms which at any given time include neuropathy and other neurological issues, frightening and serious heart palpitations and other heart issues, debilitating kidney pain issues (I’ve literally peed blood more than once), joint issues, breathing (constant air hunger) issues, blood (anemia) issues, crippling pain issues, a multitude of serious vision issues, pounding pressure in my head issues, and white lesions in my brain documented (by an MRI) and categorically dismissed as ‘nothing to worry about,’ by both a Neurologist and my (ex)GP. And I suffer a hundred other, issues, and my scores on an empirically tested-for-validity screening tool used for clinical diagnosis of Lyme and Co. (4) & (5), were OFF the charts, literally, off the charts.

But clearly, none of this is brutal enough, for my (ex)GP to, and I quote, “believe in chronic Lyme.” Chronic is her word, I never mentioned it in the endless, always-ending-in-tears-in-my-car appointments with her (and others) since last December, and it is not brutal enough for me to get any MD to a) retest me for Lyme and Co (see below for more on that entire mess), and b) to engage with me in anything more than absolute and utter dismissal once they hear that I am working with someone else, it is not brutal enough for any of them to follow me on this unplanned and unwanted journey, because I need regular blood work and ‘someone else,’ is not allowed in our flawed system, to requisition it.

The sole reason that I remain walking and talking, at times barely, is because of that someone else, my well-informed, open- minded, and constantly curious Naturopathic Doctor.  She understands these bugs (as well as anyone really can at this point), and has done the work to have (pharma) prescriptive rights, at least as far as our flawed system allows any ND to have those rights. The sole reason I am able to function at all, is a Naturopathic doctor whose own GP has labeled her as ‘just an anxious young mother,’ because she too, has Lyme disease. Her own child, may have congenital Lyme disease (6) & (7). Unlike so many of us, and in her own words, she had a ‘screamingly positive lab test,’ and like so many of us, DESPITE  that, she is just as dismissed, just as derided, just as disrespected, by her own GP.

I understand why people walk out of Dr’s offices crying because their tests came back negative, I did, because it means that they/we have nothing, nothing at all to back up, effectively treat, their/our mile-long symptom lists (4), and their/our ever deteriorating physical, financial, psychological, spiritual and emotional health. The two-tiered testing system in Canada/North America is flawed beyond belief for a thousand and one reasons, but you can read more about that for yourself in reference (8).

And even for the folks who manage to get a reasonably accurate diagnosis, or are lucky enough, for it is truly a lottery, to have/find an open-minded enough, never mind Lyme-literate MD, treatment is not simple or straightforward by any stretch of the imagination, because ‘transformers, hiders, mimickers, the ultimate eluders, like me, the greatest of great pretenders’ (9). For that is what I do, every day, pretend that I am alive. I pretend it my work-folks, I pretend it with my colleagues, I pretend it at the gas station, at the grocery store, and I pretend it during the rare-to-never interactions I have with friends and family.

I understand because adding injury (literally) to insult, many of the known and widely used pharma interventions only serve to send the beasts further into hiding (10) whether via the bio-films or cysts they create, which (the hiding) is then too often perceived or labeled as ‘remission,’ cure, even. More often than not, the antibiotic and other drug cocktail treatments used are creating an environment in the body that is ideal for what are known as chronic, persistent and/or late stage Lyme. A further complex reality is that (too) many folks are not host to just one bug, and because there are many strains, of each of them, and not all of them are bacterial in nature, Babesia for example, is a Malaria like blood parasite, so by direct extension, the beasts are extremely difficult to a) diagnose correctly and b) treat effectively, never-mind eradicate.

I understand, because like so many others, I have exhausted my financial (never mind the physical/psychological/emotional) resources just to stay on my feet, and while many of the pharma and other drugs I have used/am using have been/are, at least partially doing their job, a job, I am beyond exhausted by literally working full-time just to work full-time just to stay on my feet, and barely, keep a roof over my head. And while I understand, fully, why the true eradication of these beasts is a marathon and not a sprint (see ref. (8), (9) and (10), like so many others, I question almost daily, whether I have anything left, that is worth continuing down this, the ugliest, the most contradictory, most complex, most debilitating of rabbit holes I have yet fallen into, and we know I’ve been down a few, self- and other inflicted, over the years.

I understand because, how we are treated, my co-sufferers and I, mega-thousands in the groups I have chosen to engage in alone; dismissed, humiliated, patronized, ignored, mis and undiagnosed, is perhaps the greater travesty, and tragedy, the most savage brutality, of it all.

“In the fullness of time, the mainstream handling of Chronic Lyme disease will be  viewed as one of the most shameful episodes in the history of medicine because elements of academic medicine, elements of government and virtually the entire insurance industry have colluded to deny a disease.”

– Dr. Kenneth Liegner (11) & (12)

I understand because along with (one) of the many known bacteria that cause Lyme disease, I  am very likely host to Babesia, and possibly other, Beasts And please hear this: I am not contemptuous of the Beasts. The bugs are only doing what any living organism, including humans, does to survive; we feed off another. The damage inflicted by the (in)humans, however, those in positions of power that they either lord over us, or refuse to use as a method, a tool to support us with, is a bigger affront and travesty than anything the bugs are doing, for they do not think or feel. The (in)humans, however, make blindered, boxed, defensive, uninformed, CHOICES. Choices that contribute to the ruin and relegation to bare survival, of (too) many a human life and potential, just like mine.  It is nothing short of hilariously ironic, to the point of utter and complete idiocy, that I rely on for the roof over my head and food in my fridge, am currently employed by, one of the very systems that brutalizes me every.single.time I have to engage with it, the (in)humans in it, on my own behalf.

I am NOT, let me be very clear, NOT a fan of Donald Rumsfeld, and it makes me a bit sick to repeat anything he has said as worthwhile, but in the context of Lyme and its many complexities and co-infectious friends, it fits because A position of not knowing everything about anything, is always a good way to stay teachable, and to my mind, always desirable, but most especially so, within the context of this, my and others current reality.

“….as we know, there are known knowns; there are things we know we know. We also know there are known unknowns; that is to say we know there are some things we do not know. But there are also unknown unknowns — the ones we don’t know we don’t   know.”

-Donald Rumsfeld

I understand why people exhaust their resources, all of them, trying to know more, trying to get better when convention has failed us at every.single.step of the way. I understand why people from every walk of life and in every socio-economic and cultural group and status known to human kind jump onto every mainstream and alternative therapy bandwagon. And I understand why at the end of the financial, physical, emotional, psychological and social-support road(s), when our bodies, our minds, our hearts, our relationships, our self-worth and our self-esteem lie broken and bleeding on the ground behind us, people want to, and do, take themselves out. I understand so fully I can taste it, the why, of people choosing to end their lives, because of this thing, Lyme and it’s co-Beasts, the sick-care system, the rabbit holes of social-media ‘medicine,’ and the (in)humans, inhabiting all of it.

None of this means I want to kill myself, or have any plan to do so, for I do NOT. It means I understand why people want to. It means I understand why they do (13). I always have, in regard to other traumas in former incarnations of my life in this skin, but never this deeply, this profoundly, until now. And if you have read this far, and have at least taken a peek at the references I have laboriously and purposefully chosen for you, out of hundreds collected since last December, you will, I can only hope, better understand me (and others), where I’m at right now, why I am exhausted by the diseases, as much as I am by having to become my own doctor and researcher so much of the time, and what my next step will be

Any and all comments that I do not find helpful, or kind, will be unceremoniously deleted, and the commenter’s presence in my life, in electronic and/or real-realities, just as unceremoniously, dismissed. That, is how much space I have left for people with anything but true compassion, empathy, and even more importantly, REAL critical thinking skills.

All my love to those of you who continue to qualify in the desired categories noted directly above,

~Marcela.

August 11, 2019

Postscript: I will not, cannot respond to, and will delete any questions and/or messages specific to my illness and/or treatments, or who my ND is, and will write a separate piece in the near future with a timeline of my undesired acquaintance with these Beasts and what I have learned, what I have done/am doing about it, along with my anecdotal evidence of the efficacy (or not), of any and all of it to date. And while I want to support others in this same leaky boat, and it is most certainly a part of why I went to great lengths to put this together in the first place, at this juncture anyway, I am literally just barely keeping my own head above water. So if you are in my boat, thank you, I love you, I get it, but I can only help myself stay afloat in this moment.

References

  1. https://www.lymedisease.org/lyme-basics/co-infections/about-co-infections/
  2. http://danielcameronmd.com/misdiagnosing-lyme-disease/
  3. https://www.ninds.nih.gov/Disorders/All-Disorders/Neurological-Complications-Lyme-Disease-Information-Page
  4. http://www.lymeactionnetwork.org/wp-content/uploads/2015/06/MSIDS.pdf
  5. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5590688/
  6. https://www.linkedin.com/pulse/press-release-ground-breaking-recognition-lyme-11th-luche-thayer/
  7. https://blogs.scientificamerican.com/observations/when-lyme-disease-strikes-an-unborn-child/
  8. https://www.columbia-lyme.org/diagnosis?fbclid=IwAR1VDi_s9LY7ZxyUzIULChWQEsr7VXzJC7cxWswwTPr-ppiVapZr6SYzgMo
  9. https://www.psychologytoday.com/us/blog/why-can-t-i-get-better/201311/are-my-anxiety-and-depression-due-lyme-disease-0
  10. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6287027/
  11. https://www.researchgate.net/scientific-contributions/5985449_Kenneth_B_Liegner
  12. https://www.mdpi.com/2079-6382/8/2/72/htm
  13. https://www.lymedisease.org/anthropologist-lyme-suicide/