No Silver Bullets

31 Saturday Aug 2019

Tags

(I originally posted this to a forum I belong to, full of folks just like me, desperate to Kill the Beasts. Many, have been on/off horrendous amounts of anti-biotics and anti-malarials/parasitics for months, years, decades, only to kill the very thing we need to heal anything, a healthy gut/biome, and to get sicker by the day, many to the point of absolute disability and with no quality of life. Many of the younger folks inherited it in the womb and have been sick most or all of their lives. But apparently, congenital and/or persistent Lyme & Co. do not exist and antibiotics are the cure. I refuse to use the word chronic, for it is a complete and utter misnomer for this set of complex issues, but that is another elephant entirely. I personally know at least one person who has been absolutely mis-diagnsed with Parkinsons, and no-one want so hear that that Parkinsons meds are not working because she doesn’t have Parkinsons, she has Lyme, and likely other infections. MS, Parkinsons, Alzheimers, many others, are often misdiagnosed in people with Lyme and Co-infections like Babesia and Bartonella, because the Bugs impact the same systems as these diseases. Testing in these people generally comes up negative because we test for antibodies. A body under siege, a body whose immune system is broken, cannot produce, cannot show, antibodies in the blood. They, these bugs, wreak havoc on every single life-sustaining system in the human body, and they are neither simple to diagnose, nor easy to eradicate.)

No Silver Bullets

Following weeks of various preparations (body/food/products/home), I took my first dose (125 mg) at 10 this morning, of this very old drug (almost 70 years and counting since approval for the pharma-market), with many new, as yet fairly experimental, off-label uses.

Providing all goes well, I will be taking 125 mg every three days for the next two weeks and then adding 62.5 mg every two weeks, and later, adjusting the dose frequency, until I reach my maximum daily dose of 375 mg, which my ND and I figure I will stay on for at least a couple/few months. I am not under any illusion that this will be a ‘quick-fix,’ or for that matter ‘the fix,’ but I have faith in my own capacity to persevere, and I have faith in the useful support I have found here and elsewhere in my world. This is not my first rodeo with a ‘really big lifey-life bitch-slap,’ though it is perhaps in the top 2 on the F-UGLY list, one of the most heinous of the heinous-nesses I have waded through to date, and for so many reasons, for real-for real.

If I have learned anything in the nineteen-ish distinct and wildly different (from one another) lives I have lived in this one skin, in several countries on 2 continents, over 58 years, and through (too) many lifey-life bitch-slaps, traumas and dramas, self and other inflicted, it is this:

There is no getting over, no getting around, no getting under, anything. There is only through. Shortcuts, at least for me, inevitably, turn into the longer, more painful, more laborious, more expensive (monetarily and otherwise), way around.

There is little space left in my world and person for anything other than taking charge of my own life and of course by direct extension, my health. The only way I know how to do this for myself or for/with the people in my ‘driven by human-suffering’ work-world, in one of the so-called ‘helping professions,’ is by arming myself with as much (useful and credible) information, by utilizing critical thinking skills, by exercising prudence, thoughtfulness, and by accepting responsibility for that which is mine: my choices, based on the information I have at any given time, in any given circumstance, and by not enmeshing myself in/with, that and whom, which are not my concern.

This does not mean that I am not frustrated as all f*** with my experience and the level of ‘are you kidding me,’ regarding the bugs who have taken up un-invited and rude residence in my/our bodies, but I am challenged with being furious, or blaming them anymore, because at the end of the day, they are just trying to do what we all do: survive, literally, by feeding off another living thing. And they, unlike humans, do not have the ability to think or feel. They are microbial-doers, doing what microbial doers do. Humans on the other hand, think and feel, and then do, often despite clear and present evidence that they ought to think, feel, and do, differently.

None of this means that I am not appalled, that I am not saddened, that I am not broken-hearted beyond description at the levels of ignorance, incompetence, conjecture, conflict, confabulation and all other messes in between, around these bugs, by both the mainstream and naturopathic medical communities, and their various offshoots like research and pharma, as well as Jane and Joe Average, and our, and the people closest to us, suffering (often for years, decades), as a direct result of all that chaos.

This does not mean that I will be ‘happy,’ for having had this experience, and it is highly unlikely that I will ever be ‘grateful for it,’ specifically, once I have enough energy back to do more than go to work to afford the gas to get there, the roof over my head, the food in my fridge, and the pricey protocols and supplements that keep me on my feet (barely), just so I can go back to work to run the cycle all over again. But, it is my most fervent belief, that a great deal of my physical, emotional and psychological suffering has only been exacerbated by the ‘fury’ of it all, at it all, at them who don’t, won’t, or can’t ‘get it,’ whether ‘it’ is related to the bugs, or any other lifey-life-bitch-slap in my more recent or further pasts.

This does not mean that I co-sign, sanction or accept the really bad, bordering on libelous actions and non-actions of my ex-GP, and all the other doctors out there who are quite simply, WRONG. It means that I know better than to expend my oh-so precious energy at trying to do anything about anyone else, what they do or don’t believe (in), it means that the only thing I can do about any of it, lies in my response to it, what I choose to do with it, how far I choose to allow unhelpful feelings to run it, or not. To that end, I have chosen to disengage, even if too late, from some of the conversations I found unhelpful here and in other parts of my life, and have tried to walk the talk I speak of above, to the best of my innately flawed, and acutely human, ability.

I cannot articulate strongly enough, my gratitude for this group. I have prepared as much as I humanly could under my current physical, psychological and financial circumstances, and I could not have done it half as well without some of the great information and support in this forum. I go into it knowing that I have done what I can to provide myself the best possible success given all of the unknowns, the complexity and myriad variables that are inherent to this treatment, these Beast, and most importantly, I know that there are few, if any, silver bullets in life, most especially in life with Lyme and Co.

Thanks for helping me start, I’ll post updates as coherently and as often as possible. I work full time in a fairly high-maintenance job, with a commute, and my work-hours spent supporting folks in the midst of their various lifey-life bitch slaps, with both of us trapped in most inadequate systems and resources. So in the event I am not present here as often as I would like to be, please know, that I appreciate so many of you so very deeply! I have also learned to set and respect my own boundaries (because they are there to ‘keep me in, not others out), and there are times when I simply cannot engage with anyone, in the e-world or in-human, in regard to any topic, never mind foraging in the deep, dark forests of the Beasts occupying my (and your) body, and the entirety of many of our lives.

With love,
Marcela, doing battle with some mighty tiny, but mighty powerful, Beasts, and the systems around us in the world.

Posted by ~MyLa | Filed under Commentaries: On what matters to me, Life Lessons & Stories, Poetry

≈ Leave a comment

Image

I Understand Why They Kill Themselves

11 Sunday Aug 2019

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 with my work-folks (clients/patients), 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, painfully ironic, to the point of utter and complete idiocy, that the roof over my head, the food in my fridge, the pay in my bank account, are supplied by, the very ‘sick-care’ system that brutalizes me every.single.time I have to engage with it, the (in)humans in it, on my own behalf, in regard to this illness.

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

Posted by ~MyLa | Filed under Commentaries: On what matters to me, Life Lessons & Stories, My World(s), Tales out of School

≈ Leave a comment

Marcela: Unfiltered

~ living out loud…

Monthly Archives: August 2019

No Silver Bullets

I Understand Why They Kill Themselves

Share this:

Share this: