Thursday, September 6, 2012

Healing and fighting...

In May, I finally fell through the doors of an LLMD, one I had chosen, one I knew would help me. And he has been. I am more functional every day. I am immensely grateful. Right now, I am also immensely angry.  I learned from a friend and fellow patient of his today that the records of all his Lyme patients have been subpoenaed.  I am frightened for him. He gives so much, from his small office. I am worried for his staff. I am, of course, worried and frightened for myself. And I feel violated. *My* records are in there. *Mine.*  My friend's, too. Maybe yours. I wish I knew how to help him. I wish this disease and the bizarre agenda that comes with it did not render us all, patients and caregivers, at some level, powerless. No pithy ending here, just anger and frustration.  This is wrong.

Tuesday, June 5, 2012


 A post from SpiroChicks contributor Lyme is Real.

I've been wrestling with writing, missing the May deadline for a Lyme Awareness post. Yesterday our Border Collie cracked the writer's block.

A family of rabbits lives in our backyard, darting and hopping; very playful. Giving the illusion that Richard Adam's Watership Down's warren has sprung straight from the pages into our yard. Our Border Collie has a different take. To Marley, it is more like Cynthia Rylant's Mr. Putter & Tabby Feed the Fish.where Tabby, is driven crazy by goldfish. Yesterday, Marley flew into a frustrated frenzy, shredding every piece of bedding down to and including my side of the mattress. Fortunately, no quilts were damaged, but UGH! Suffice it to say, between medical expenses, student loan payments and life in general, new bedding and a mattress are not in the budget. So what to do beyond providing love and reassurance to one very remorseful BC who just happens to be draped over me as I write?

Well, there are two traits that come in handy if you're going to survive Lyme. You must be adaptable and a great problem solver. At bedtime, my husband carefully laid out the sheets, making sure the tears didn't overlap and fell quickly asleep. Sewing machine repairs could wait, but what to do with the rather large hole in the mattress on my side of the bed?

Wool roving? I replaced a piece of mattress, stuffed roving around it, then used a pad from a brace to hold it all in place. Good enough. Just as I drifted off to sleep, it hit me that the shreds of fabric were a simile for our lives.

Life as we once knew it in shreds or we're holding on by a shred? A bit of each I think. Dear ones facing cancer and congestive heart failure. Shared grief from recent losses. On the Lyme front, our nine year old is adjusting to life with a shunt and the remaining syrinxes in her spinal cord. Painting, singing and writing bring much joy. She has loved rejoining her classmates at school. Our 14 year old recently developed complex regional pain syndrome after a knee injury. So painful and debilitating! Music remains her solace and inspiration. As one world opens up a bit, the other shrinks. The ebb and flow of chronic illness.

A friend recently asked if I was keeping my head above water? I laughed, "Nose and lips."

Daily antibiotic infusions keep me afloat. Infusions to knock down mastoiditis, a stubborn bone infection left over from my Lupus days. I tire easily. A sense of humor, though sorely tested, hangs tough, but please pardon me if I laugh too loudly. The sense of humor is a bit strained and the left ear still messed up, but as our youngest says, "Welcome to my world."

Who can argue with that?

Yes, blankets are torn and our lives in disrepair, but shining moments keep us moving forward and our spirits alive. So here is my May service announcement in June. As the tick populations grow and spread and scientists warn of a perfect Lyme storm brewing, please learn what you can about Lyme disease. Not all ticks are infected with Lyme, but one that is can change your life forever. When I think of the havoc a tiny deer tick caused in our family's lives, it's humbling. Remember, a bull's eye rash is a definitive sign for Lyme, but it shows up in a small percentage of cases. Unfortunately, the tests for Lyme are often unreliable. Lyme disease should be a clinical diagnosis. A bull's eye rash or a summer "flu" are warning flags. Adequate treatment at the onset of infection can spare years of suffering later. Closing with best wishes from our family to yours!

Thursday, May 3, 2012

A balance of evils

The news cannot have escaped you: ticks are expected to have a banner year.  I’m sure this news thrills you as much as it thrills me.  I have dogs and cats who go outside. I like to go outside myself.  I know that there are infected ticks in my own backyard (a neighbor was infected by a tick in the park across the street last summer).  So, as some people cast their minds towards whether it’s time to replace that grill and whether there’s still time to expand the back deck, I’m thinking about chemicals. Sum-sum-summer-time, you know. 
Now, reasonable minds may differ on this. Mere repellants do not appeal to me. In my mind, no tick should live to bite another day. Permethrin is, then, should be my chemical of choice. It's what's recommended as being a safer choice than a potential tick bite.  So my analysis is easy and I'm all set, right?  As with all things Lyme, it's never that easy. 

Permethrin has some issues.  It's a neurotoxin. Probably. Also, it probably causes cancer. But the EPA hasn't really looked into that, so it's hard to say. It is highly toxic to aquatic critters (and probably plants, but that's not really been studied all that much either).  It's highly toxic to honeybees and apparently it will kill my cats.


My neurological system is already plenty compromised, thanks. Cancer kinda runs in my family.  Permethrin, then, may not be the best option for me. 

I'm also pretty sure that another tick-borne infection would do me in, so I reluctantly must consider mere repellants.  Picaridin is the new, cool tick repellant kid on the block. It seems pretty okay, except that it may be toxic to freshwater fish.  The World Health Organization feels it does not present an unacceptable health risk.  I'm not sure I find that a glowing endorsement. Every natural herbal option I've tried has, on me, acted as insect perfume.  Bugs dig me, especially with some fresh sauce. 

I want the perfect chemical. I want something that is only toxic to ticks. Okay, and mosquitoes.  Fleas would be nice too. But not my cats. Not innocent fish, or algae.  And not, you know, me. I want a toxin that makes moral judgements and decisions, that can be smart, agile. It's emotional decision making, I know. I think I'm allowed. What I want, indeed, what I feel I deserve, and you deserve, is a toxin as smart as borrelia burgdorferi and its cousins. We get smarter about cancer every day. We could get smart about insect-borne diseases. But we don't. Still. So I will weigh my options and make the best choice I can. it will not be the best option we are capable of producing--of that, I am certain. 

Sunday, April 29, 2012

A Compost of "No"

The life of a chronic Lymie is often a parade of the absurd. For instance...At the end of March, I quit my job. At the same time, I applied for more life insurance, particularly with the notion that I would be giving up the insurance provided by my now-former employer.  Of the things I've been worried about, whether I would actually get life insurance was not one. I mean, my health insurance company has trouble believing Lyme *exists*...surely I wouldn't be denied on that basis. Ha.

 I finally found an insurance company that takes Lyme seriously. No, don't celebrate. USAA has "postponed" a decision until my Lyme is "resolved." Seriously. "Because of potential complications." What does that mean? "We want you to be symptom free." Yeah, well, me too. I'd especially like my brain back (That old saw "Of all the things I've lost, I miss my mind the most"--not very funny anymore.). The layers of irony are astounding. My health insurance company doesn't think I'm sick. My life insurance company apparently thinks I might die. The common theme, of course, is that neither wants to take on the financial burden of me.  Because I have chronic Lyme, which the CDC says doesn't exist. Which shouldn't make me a financial burden. Right?

The politics of Lyme/tick-borne-disease/insect-borne-disease diagnosis and treatment are layers of quagmire, sandwiched with horse manure, sprinkled with a few bright stars. It ought to be fabulous compost, don't you think? And yet, so far, my garden is not sprouting roses. Briars, yes. And, when I have the energy for it, anger.

I was too flabbergasted to do more than splutter in disbelief at USAA. Yelling wasn't going to do any good anyway.  I'm lucky--I was able to convert my employer-provided policy, at exorbitant cost, but at least, should the Lyme, or a bus, take me out, my family has some coverage.  I think the "sorta denial" I received is an indication that chronic Lyme is gaining recognition. At least, that's the positive spin I choose to put on it.

Tuesday, March 6, 2012

Chronic Lyme Goes Mainstream

By Spirochicks contributor Ozone Amanda

Another vindication for Chronic Lyme!

Sorry for not having the time to write a full review of the below Washington Post article, but I think it speaks for itself. The writer sounds so cautious and trusting of hierarchical medical authorities like NIH and IDSA (at least at first), that I think this article may even be relatable to skeptics of Chronic Lyme. I especially appreciated the author's call, at the end of the article, for recognizing and researching health issues that cannot be seen or clearly, verifiably measured. The reaction of the epidemiologist and her friend's first doctor--that it's all in your head or part of an autoimmune post-lyme reaction--is far too common and leads many ill people to doubt themselves, which most likely suppresses their immune systems and causes them to fall further into illness.

To read the article, navigate to:

Heal on!