What do we do when the limit of medical care is reached but we aren’t healed, let alone cured? Should we lie down and think this will persist until an unscientific miracle cures me or a scientific death relieves me? If you are reading this, chances are you didn’t accept The End of Known Treatment but kept trying even when it meant venturing into the wild lands outside western medicine. What you tried and how that helped or didn’t help is our topic for tonight.
But first an announcement.
please respect us.
If you have come to sneer, BELITTLE, or pontificate as if you bring the GOSPEL of science to we stupid unbelievers —> — > GO AWAY NOW.
→ — > THIS IS NOT for you. Please LEAVE now, silently. < — < —
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Here below the request for respect announcement we are open to hear your stories without judgement.**
The what next, now that medicine has failed topic came up for me because my healing has much more to do with unsanctioned treatments than from modern medicine. Sixteen years ago, I was nearly dead from Lyme and other tick-borne diseases (TBDs) diagnosed too late for effective treatment. After diagnosis and beginning treatment, I discovered I’m allergic to the antibiotics needed for my suite of TBDs. I weighed 96 pounds (at 5’8”) and couldn’t finish a sentence or read anything, not even captions under a magazine photo. I recently found a few photos of me during the horrible pain-hag years and I looked even worse than I thought. I kept the photos to remind me how much I’ve improved using non-standard measures.
Awhile back, I read a statement that brilliantly articulated the thought processes motivating us to try things beyond the usual medically accepted treatment and symptom management. With some edits and added bold, here is that remark.
Someone who has never reached the limits of modern medicine, never arrived at the point in the train tracks where there are barricades, and the train just doesn’t go any further, and the only way to go forward is to get out and walk on your own two feet, probably doesn’t understand why people use unapproved treatments.
If you are sitting there, feeling reasonably healthy, able to get up and do whatever you want to do next, you probably have no need to go beyond medical standards.
The reason people seek answers outside of tested and approved medical treatment, is that tested and approved medical treatment has failed. You have reached the end of the line with tested and approved, and not even moved one inch from where you boarded the train. When I left tested and approved medicine, I had tried all the recommended medications and therapies available and was worse. Only after leaving tested and approved medicine, did my condition start to improve, with alternative treatments.
It’s interesting how risk is viewed in this country. People live in a bubble, in a state of delusion, believing one more guard at the movie theaters, one more gun control law, one more law against illegal drugs, one more tap on our cell phones, will make all the risk and bad things in the world go away. We just don’t cope well with risk. We want to close our eyes and make it go away.
But, risk does exist in this world, and people who can navigate risk successfully, can sometimes benefit from its counterpart — reward. When someone is dying, when they are going blind, when they exist in a world of pain and fatigue that is similar to end-stage cancer, but without impending death as a potential release — risk and reward starts to look like a reasonable option. If you’ve never stood at that cross-roads, it may sound crazy. If you have stood at that cross-roads, you will understand what I am saying.
No person can decide for another person what their risk threshold is. The world is changing, and people are starting to see the authoritarian model of medicine for what it is, and are starting to push back and demand a right to make their own decisions. The Medical System is our legal drug trade. There are billions of dollars in that trade, and those vested interests want to protect their fiefdoms at all costs. What we are seeing is a revolt — people who, when they don’t get the results they are demanding, walk away, taking their money with them.
People have a right to fight for their lives.
In fact most alternative methods are low risk compared to Standard western medicine (SWM). SWM strongly validates some alternative treatments, yet nonetheless they have been called quackery by medical people who have refused to so much as look at their own peer reviewed journals. Traditional Chinese Medicine offers herbs that have newer NIH research validating their benefits. For example, here’s a study which demonstrates a combination of Chinese herbs is as good as prednisone for treating asthma, without the adverse side effects. Here is a study that shows acupuncture alleviates fatigue in breast cancer patents. Acupuncture has helped many despite no one being able to explain it in SWM terms. In fact, research over the past decades shows that the placebo effect is beneficial even if you know you are taking a placebo.
Science has discovered how emotions influence our immune system. Dr. Candace Pert was a molecular biologist now viewed as the Mother of Psychoneuroimmunology. Pert’s 1999 ground-breaking book Molecules of Emotion was favorably reviewed by The Smithsonian Magazine.
The work of Pert and her colleagues showed that a variety of proteins known as peptides (including endorphins) were among the body's key "information substances" - and each of them could affect our mind, our emotions, our immune system, our digestion and other bodily functions simultaneously. [...]
...the peptides that flood our bodies are, in fact, the molecules of emotion. Emotions, largely ignored within the traditional confines of science and medicine, are actually the key to understanding psychoimmunology's emerging picture of how body and mind affect each other. For example, it's through the emotion-modulating peptides that an embarrassing thought can cause blood vessels to dilate and turn a face beet red. In the same way, the molecules of emotion can mobilize immune cells to destroy an incipient tumor. Techniques like meditation or visualization may also act as forces to set those molecules in action.
An article in The Guardian last week, How I learned to cope with chronic pain, discusses how the author found answers to post-dengue symptoms outside SWM. The article ends by listing ten measures and three books the author says “tackle the precise tool that has helped turn things around: my attitude toward the pain.” What turned things around for her are non-SWM but effective.
[Her doctor] referred to the difference between “healing” and “curing”, with the central message that it really matters to take a more active role in the care of our own bodies. Ultimately, if you fall through the cracks of the medical system, or if you fail to receive a diagnosis that has clear, actionable treatment, you have to take some control back for your own sense of self and health.
The ten practices and three books the author lists were key for me too. Also key to my healing was knowing my genetic traits for nutrient deficiences and interactions with drugs (including OTC drugs like caffeine), qi gong, and low dose naltrexone. I’ve tried things that sounded wacky but harmless (none of those helped) and others that have decent research validating them that are not widely accepted (some helped some didn’t). The SWM treatments I took at intervals for over eight years harmed me and only one had helpful results (reduced Babesia to mostly subclinical). I trust myself to evaluate the risk to benefit ratio of my alternative treatments and have approval from my doctor (although his approval isn’t needed). I’M NOT DONE HELPING MYSELF REGARDLESS OF WHETHER THE TREATMENT IS SANCTIONED BY MEDICINE OR NOT.
The comments are open to hear your stories. What have you tried?
KosAbility is a volunteer diarist community meeting the last Sunday of each month at 4pm PT/7pm ET. We embrace people living with disabilities, who love someone with a disability, or who want to know more about the issues. Our use of "disability" includes temporary as well as permanent health/medical conditions, and small, gnawing problems as well as major, life-threatening ones. Our use of "love someone" extends to cherished members of other species. Our discussions are open threads in the context of this community. Feel free to comment on the diary topic, ask questions of the diarist or generally to everyone, share something you've learned, tell bad jokes, post photos, or rage about your situation. If you are interested in contributing a diary, contact Besame, wilderness voice, or Steven Park.
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** IF SOMEONE CHOOSES TO BARGE IN ANYWAY TO SCOFF, PLEASE HELP FLAG THE COMMENTS INTO HIDDEN. AS THE DIARIST, I CANNOT FLAG PER DK RULES. NOR CAN ANYONE FLAG THE SAME PERSON MORE THAN ONCE A DAY. SO IT TAKES GROUP EFFORT TO REPEL INTRUDERS. I THINK IT iS BEST NOT TO REPLY TO ANYONE WHO HAS READ the request for respect YET CONTINUES TO THE COMMENT SECTION TO BELITTLE AND SNEER.
THEY ARE NOT WORTH OUR ENERGY. FLAG, HIDE, AND BEGONE.
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