Walking Nature Home by Susan Tweit

[jasonjuul]

Hi,

  I recently went on Amazon.com and ordered every book that was even remotely related to Mixed Connective Tissue Disease. When I read the description of this book it didn't sound like it would be too helpful in my quest to better understand this thing (I have a hard time discussing disease and illness in conjunction with my daughter so I use the non-threatening substitute “thing”) but I was pleasantly surprised at how helpful the book was to me.

  Susan Tweit was diagnosed with UCTD when she was, I think, 23, although by the end of the book when she's 50, it sounds like there's no definitive diagnosis as you'll see from the excerpt, below.

  I found the paragraphs from pages 154 to 157 to be particularly interesting. I hope you do as well. I really like the analogy involving the Border collie as we have a Border collie too. Although our Diamond wouldn't know what to do with a sheep.

  I know I could just scan the pages in and link to a document but for some reason I want to type them in; I suppose so I can hang on the words a little longer. Anyway, here goes: (license taken with abbreviating)

“I turned fifty recently, nearly 27 years after being diagnosed with an autoimmune disease whose name experts still cannot agree on. It may be lupus, named for the facial rash that signals flare-ups, and known for its fevers, dragging fatigue, and its degenerative effect on internal organs. Or it may be mixed connective tissue disease, an overlap syndrome melding symptoms of lupus with Sjogren's and chronic muscle pains of polymyositis. I once hungered for a definitive diagnosis – I think I wanted a label to validate my experience – but these days I don't. What matters most to me is to be able to hear what my body is saying and respond to its changing needs. I am acutely aware that no name will change how I manage my health: I'll continue adapting my life to accommodate the symptoms.
  I am also acutely aware that these words have great power, and names can be prejudicial. Take disease. Labeling a person “diseased” is akin to giving them stigmata, visible marks of their inability to maintain normal health. That's not helpful with a chronic condition like mine, which defies the ministrations of Western medicine. Thinking of myself as diseased just makes me feel sick. Even the word “illness” is injurious. Own up to having a chronic illness, and listeners withdraw, instinctively pulling away to protect themselves. I'm not contagious.
  The story that Western medicine tells about autoimmune diseases stems from World War II – era research that quite naturally – given the events of the time – envisioned the immune system as a military operation with a variety of cells patrolling the body in a sort of biochemical halt-who-goes-there, search-and-destroy scenario. In this tale, autoimmune diseases arise when , for reasons unknown, those defenders go awry and mistake our tissue for foreign invaders. The upshot is an attack from within, causing the symptoms that characterize these conditions.
  “Once again, medical language is loaded, this time with military metaphors,” writes Terry Tempest Williams in Refuge. “Can we be at war with ourselves and still find peace?”
  A new model of how the immune system works, developed by immunologist Polly Matzinger of the National Institutes of Health, could help. Our immune systems, Matzinger believes, protect us not by naively searching for foreign bodies to destroy but by responding to signals of danger broadcast by our cells. Matzinger explains her model with an analogy to her Border collie Annie. When guarding a herd of sheep, Matzinger says, Annie doesn't waste her energy casting about for invaders; instead, she snoozes, one ear cocked to the sheep. When they show signs of unease, she leaps into action. Dendritic cells in our bodies , says Matzinger, act like Border collies. These cells' fingerlike projections touch from fifty to five hundred neighboring cells. As long as this “flock” acts normally, the dendritic cells snooze. As soon as one of the cells does something abnormal, such as spewing its potentially toxic contents after being infected by a virus, or leaking cell fluids after sustaining a physical injury, the dendritic cells leap into action like so many Border collies, triggering the process we call the immune response.
  It may seem like splitting hairs to move from seeing the immune system as a search-and-destroy patrol to seeing it as a protective Border collie. But the shift in character between the two stories has profound implications. For one thing, Matzinger's model may fit our experience more closely, explaining many important exceptions the conventional model cannot account for, including why the immune systems of pregnant women do not routinely attack and destroy the “foreign tissue” that makes up normal fetuses. Moreover, her model opens the possibility that the immune systems of people diagnosed with autoimmune diseases aren't turning on us; they are simply responding to danger signals generated by the cells of our connective tissue.
  Further, recent studies suggest the immune system may act more like a cellular trash-hauler and hazardous-materials disposal team, mopping up the molecular debris spilled in the everyday wear and tear of cells, and identifying and hauling away both innocuous but no longer needed compounds and potentially harmful substances and organisms. In addition, new research on chronic fatigue syndrome shows that some of us are genetically and physiologically less able to adapt to certain life stresses.
  These stories suggest a fundamental rethinking of the process of autoimmune diseases, emphasizing the role played by chronic cellular damage caused by long-term emotional and physical stress. We already know that stress can damage or kill cells, and stress reduction techniques can result in significant improvement. If those of us diagnosed with autoimmune diseases respond to stressors in a way that is fatal to specific kinds of cells – for instance, insulin-making cells, the flexible cells deep in our lungs, or the cells that line our joints – the resultant chronic damage would trigger an equally chronic immune response. As our immune systems work to dispose of the stress-damaged cells, we would experience fever and inflammation, joint damage, lung scarring, the inability to process sugars, and the other symptoms we call autoimmune diseases. Perhaps the real story of these conditions is not about disease at all. It may simply rest on individual variations in the body's complicated and tangled response to the factors we call stress.
  Whatever the story, I've learned to live within the shifting parameters of my health, and despite my initial prognosis, here I am. Not perhaps as healthy as I might wish to be, but as Ram Dass emphatically declares in the title of his memoir about life after a near-fatal stroke, very much “still here.””

[Kim]

Hey Jasonjuul,

This seems too obvious and I'm sounding like a broken record, but has your daughter been tested for Lyme by Igenex?

My long laundry list of so-called auto-immune diseases were actually caused by Lyme.  Now that I've been treating Lyme, I'm almost completely better.  We get caught up on the labels for things we're treating, but my feeling is that our immune system has gone out of balance from trying to fight an infection and it's always best if you can pinpoint the infection. 

kim

[jasonjuul]

Hi Kim,

  I'm planning on having Rachael tested for Lyme by Igenex. This in response to a recommendation from Maz. I sincerely appreciate the recommendation from both of you. We have an upcoming appointment with an AP physician and I hope to have him sign the lab req.

  Rachael was tested for Lyme disease back in 2003/2004 when this whole thing broke but the tests (ELISA and Western Blot, I think) came back negative although now I'm acutely aware that there can be a lot of false negatives.

  I'm taking off the gloves now. Her Ped. Rheum.'s only answer is to administer stronger and stronger meds. There doesn't seem to be much interest in exploring possibilities such as Lyme disease or environmental toxins, etc. I'm hoping the AP doc we see first week of September will be willing to consider and explore these possibilities.

  Thanks again for your advice. I am humbled that so many people are so willing to help.

God Bless,
John M.

[Kim]

John,

Great that you're doing the Igenex test.  Be sure to get copies of the actual test and don't rely on your doctor boiling it down to “pos” or “neg”.  You can go to lymenet.com and print out Dr. C.'s explanation of the Western Blot.  He itemizes the significance of each band, and if only one Lyme-specific band registers than she's been exposed.

Good job, dad, you're on the right track. 🙂

kim

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