Tag: lyme disease

Chronic Illness, Lyme, HIV the somatic connection

kalaedescope for Chronic illness, Lyme, HIV

So here is an interesting tidbit. I have multiple systemic infections (I got a Lyme diagnosis…) … weird thing is that the person I get on with the best has HIV. He found my published work on Lyme and Tardyve dyskinesia and contacted me because it was so resonant for him. He is a 25 year old man . Multiple systemic infections are what is happening to a lot of people. Only some of us get diagnosed but they can be as diverse as “HIV” and “Lyme.” Chronic Illness, Lyme, HIV -- endless manifestations: diagnosis not so important The real issue is that chronic illness, in general, is slowly killing millions but only some of us get diagnosed and treatment is pretty much shit when it’s complex and includes neuro issues. The diagnosis are pretty meaningless, as all those impacted have unique manifestations. It seems clearer and clearer that we’re dealing with systemic infections pretty much across the board with chronic illnesses of all kinds.

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Multiple Systemic Infections: a system wide denial of implications

an image of microorganisms for Multiple Systemic Infections: a system wide denial of implications

I've been navigating this world of multiple systemic infections for many years now. The pharmaceutical drug injuries which caused Tardive Dyskinesia has made it a potentially deadly undertaking. Doctors, even ones who can hear me, don't want to take me on. Liability and capitalism rules all in their worlds and people like me are left to fend for ourselves. I have watched many people I love succumb to the medical system. It's been excruciatingly painful. So many dead friends. It started in high school for me!

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Withdrawal anniversary: 16 years

The last time I did an anniversary post was 8 years ago. It's my birthday too. I was born on this day. So it's been my anniversary and my birthday for 16 years. I'm drug injured and seriously so. I've never regretted coming off psych drugs.

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The hungry ghosts know. Listen.

sunflower for the hungry ghosts

Somatic mysticism, diet and returning to my ancestry…. The hungry ghosts know. Listen. I like using “somatic mysticism” to explain my experience because I feel everything deeply in my body. I can feel my cells doing their work quite often and I feel all manner of metabolic movement and I feel far more than I can even begin to really know from a biological standpoint. Still when I listen and pay attention I collect data, information to act on.

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Chronic illness, pharmaceutical injury

fun design

This is my experience after what, at this point, amounts to thousands of hours of mindful presence with the chaos in my body. ~~ Chronic illness, pharmaceutical injury ~~ One learns when one focuses attention. One learns a whole lot. That is meditation. Focused attention. So, my experience of chronic illness: Chronic illness is the body saying no to the toxic societal structures that we have internalized…healing from chronic illness is healing the whole human shebang. ~~ To be clear healing does not mean curing. There is no cure to this being human. ~~ ....

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Lyme disease / systemic infections

blue petaled flower Lyme disease category page

My experience with Lyme disease is also my experience with dyskinesia. The term "multiple systemic infections" is a better way to talk about Lyme disease. Lyme is always many different infections in longterm, chronic cases. Testing isn't dependable either . This area of study is not well defined or determined at this time. Insurance doesn't cover care and people are in crisis.

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tardive dyskinesia/lyme face: my best looks over the last four years

tardive dyskinesia/lyme face

tardive dyskinesia/lyme face: my best looks over the last four years ~~ These selfies show how I’ve looked for most of the last four years. The condition is severe for about 6 months of the year and then fluctuates for the rest of the year.

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Tardive dyskinesia is an infection

night sky photo for tardive dyskinesia is an infection

It turns out dyskinesia is a recognized symptom of Bartonella, a Lyme disease co-infection. I've been researching Tardive Dyskinesia which is intimately associated with how I experience the Lyme and Bartonella infections. It's generally considered a pharmaceutical brain injury (which I believe it also is and it's why I got the diagnosis, because of my pharmaceutical history) but it seems that the reason it's a pharma injury because it allows infection deep into the brain causing much more serious neuro-lyme. This is not accepted fact in the medical community but it's clear as my experience in my body. Tardive Dyskinesia is brain damage because the psychiatric pharmaceuticals make existing infections far worse.

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A return from the dead

Mimosa tree taken by Monica cassani for Return from the dead

Why did I mostly stop writing? Because I was dealing with something I no longer knew how to talk about. Mostly because people really don't like reading about disability. All the able-bodied ableists who want to pretend that somehow disability must be the fault of the person suffering from it. Yeah. Lots of my readers too. The comments became unbearable and remain that way. I mostly keep them turned off. (2026: I've turned my comments back on these days ... the site is quieter now that I don't engage in social media much) I've written a few new pieces on my own idiosyncratic experience of TD. I thought I'd share with you Robert Whitaker's long and well-researched piece. )

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TD update

dawn with sun TD Update

TD Update: I've come to believe that serious microbiome issues (lyme disease) and tardyve diskinesia are essentially the same thing. Such is the experience in my body. I have lyme disease -- with five documented pathogens involved. To be clear I don't embrace the diagnosis because it's highly problematic. It is helpful in getting some of the care I need.

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Getting healthy: moving towards balance

girl running in field for moving towards balance

Healing (for me) didn't mean killing off all micro-organisms indiscriminately. It meant bringing balance by moving out excess of the ones making me sick and building up with other more expansive ones. These little guys have consciousness. They'e part of us and work together with us. Imbalances is what make us sick. Healthy people have the same bugs in different proportions. Getting healthy means learning to bring it all to balance. I call it internal eco-system management. This goes along with many other aspects of the body for me since my entire autonomic nervous system got blown out. It was an exceedingly complex process after being bedridden and atrophied for some years.

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