Why is Lyme Disease so Difficult to Diagnose & Treat?

So, the New Hampshire Senate's Committee on Health, Human Services, and Elderly Affairs has ignored the testimony of patients and apparently thumbed their noses at the NH House's HHSEA Committee's unanimous passing of HB 490. Instead of passing it, they have effectively pocketed the bill, apparently giving the state's Medical Association time to prepare additional arguments against it. However, they still have time to reverse this decision this week. Am hopeful they will.

The bill would establish a commission to study the role of clinical diagnosis and the limitations of serological diagnostic tests in determining the presence or absence of Lyme and other tick-borne diseases...and available treatment protocols, plus appropriate methods for educating physicians and the public about the inconclusive nature of prevailing test methods and available treatment alternatives.

Attached is a brief history of my own timeline of my battle with Lyme disease and other tick-borne co-infections (more information is available on my website). I am hoping this illustrates just how difficult this journey was for me, and is for so many others. Our question is WHY? 

Why is it so complicated to diagnose and treat Lyme disease?

I implore any Granite Staters who are concerned about passing HB 490 now to contact senators of the HHSEA committee before April 18. Thank you!

Lyme caused my Interstitial Cystitis (IC)

In sharing my experience for the February article, What Causes Interstitial Cystitis? How 10 Women Got to the Root of Their Bladder Pain, by Suzannah Weiss for Bustle, I was asked, "How did you find out your IC was due to Lyme?" 

I thought I'd share my answer here, in case it can help someone. In the article, which deftly weaves together the stories of all 10 patients, I am the Dana that is mentioned somewhere in the middle. 

The short answer is that my LLMD told me so—based on his years of experience with patients.

The medium answer is that I saw evidence of it as the antibiotics that helped me heal from my Lyme ALSO eventually eliminated my IC symptoms.

The long answer includes dates/timeline:

• In November 2011 I presented with so much blood in my urine that a doctor and a nurse each commented they had never seen so much; usually blood in urine is microscopic. (My specimen cup looked like raspberry lemonade.)
• While my doctors then did not diagnose IC, I had Googled “prostatitis for women” based on my symptoms being so similar to my late dad’s prostatitis. I found IC. Bought the book “You Don’t Have to Live with Cystitis” by Dr. Larrian Gillespie, and immediately followed the extremely restrictive diet. I also created the website Confessions of a Chocoholic about the diet and some of my early experiences. 
• At the end of February 2012 a new doctor diagnosed IC. As a result, I began being seen in a woman’s clinic with several new doctors and caregivers, including a urologist, an OB/Gyn, a chiropractor, a physical therapist, an acupuncturist, and a nutritionist. 
• My restrictive diet gave me back some mobility. When I first became ill, I couldn’t travel since I had to void every twenty minutes. By summer 2012, I could go about an hour, which meant I could more easily travel to doctor offices, and that I could finally travel an hour to my sister-in-law’s to participate in expanded family activities. (I was particularly loyal to the diet since the urologist suggested a couple operations involving either expanding my bladder or removing it in order to solve the IC symptoms; neither sounded acceptable to me, so I decided to give the diet a chance.)
• In June 2013 I cut myself and it quickly became infected. As a result, I was put on heavy duty antibiotics…and almost instantly felt great. My physician assistant ordered a lyme test since I shouldn’t have felt good on these particular antibiotics. The test wasn’t itself conclusively positive, but combined with my history of illnesses that extended to 2005, she consulted with the area’s LLMD and together they decided to treat me for Lyme. I “enjoyed” the herx process, which I soon recognized as a positive sign that the meds were working. I had developed a number of other autoimmune disorders since the November IC symptoms had begun, and my herxing experience was that my latest illnesses were first heightened and then gone, such that IC was one of the last to be finally cleared away.
• Today—and for the past several months—I am battling Lyme again. My fifth bout of it. This particular turn has my IC flaring something horrible. I am using natural tinctures and supplements, plus a moderately restrictive diet, to treat it this time (with the help of a natural wellness specialist) rather than the antibiotics, which eventually seemed to tire my gut. I have to admit that my current stress levels have meant that I keep caving to cravings (sweeteners like honey & maple syrup), which has slowed my progress. Am only human, I guess…. But I need to stop feeding the Lyme sweeteners. I am hoping I can get back on track this month.

Thanks for asking! Good luck with the article. And feel free to ask additional questions. I’ll try not to be so verbose. 

All good things...

It's official: I'm writing again.

Today it was only a glimmer of a chapter, but it happened. Rewriting, actually. Chapter Six. Dinosaur that I am, I tend to write in a notebook first. Yes, longhand. Cursive even. That none but I can read (just ask my former students or clients).

So today I grabbed one of three notebooks filled to the brim with the sketchings of my first-draft, second-in-the-series novel, and picked up where I'd left off: at the beginning of the next chapter. I didn't get far. But I'm not bothered by that, because I'm writing again.

Also editing. I finally found a couple hours to sit with a client's final chapter of her novel (yay, her!!!) to edit and pen my notes. And before that, I reconciled four months of our household bills, and prepped for the next onslaught. Including that big ticket item: the IRS. Oy! They do come calling for those of us who happen to be self-employed. That's both my husband and me. Therefore, April 15th is always the most painful day of the year: The day we pay up on the former year's taxes AND pay the first installment of the current year's taxes.

If lawmakers want my vote, they would do well to break up those two painful self-employed payments. And do something about making healthcare affordable. Before you scoff--do you pay over $16,000 a year for two people, which doesn't amount to much of anything covered until we fork out another $13,000??? Glass houses, people!

Of course they should also bloody well follow New Zealand's lead and get the high caliber rifles outta the hands of everyone in this country (NRA, I'm looking at you, you nasty buggers!). And don't even get me started on climate change (have you seen my film at the McAuliffe-Shepard Discovery Center? If not, why not?).

But I digress. Since I do, reminder to self: I need tissues next time I'm at the grocers. And bananas.

So tomorrow's looking up: I think I'll jump right back into rewriting and typing chapter six into my computer. I'll also be picking up my already published novel, as I reread and review before my Lyme disease discussion with Dr. Lynn Durand, LLMD, at Gibson's Bookstore next Thursday evening at six o'clock. It's free, if you want to join us. You can buy my book too while you're there. That won't be free, but what in life actually is?

I'm exhausted, and unnaturally nocturnal these past few days, which some are telling me is on account of the super huge moon lighting up the night, and some other hocus-pocus planetary stuff, which I'm still not sure I absolutely believe...though I do believe I'm haunted by...uh, visited by...my spirit guides, dead relatives, and guardian angel.

But once again, I digress. The point of this blog? That I'm writing again. And whether or not you're happy about that, I can honestly report that my protagonist Anna McGrory is tickled to bits that it is so. She wants to get on with this body identification process, after all.

Ohh...who will she see in that drawer in the morgue? Only my spirit guides know. I hope.

Wow. Have I been lazy or what?

Just noticed my last post was in December. While Novel Launch Day was pretty spectacular--thanks to all my friends and the two sites that hosted me and my NEWLY PUBLISHED novel (Gibson's Bookstore in Concord, NH, and MainStreet BookEnds in Warner, NH)--a few things have happened since.

Mainly, my step father-in-law has transitioned from our home to an independent living facility across the street from the hospital, which is handy when it is necessary (like all day yesterday when I went with him to a last-second doctor visit to help solve a suddenly painful issue). It is supposed to be a win-win situation: a win for him since he is so social and now has tons of friends to hang out with.

Some really cool wallpaper in an exhibit at MASS MoCA.
We were there last weekend to see the Punch Brothers
in concert. My life isn't entirely about taking
care of others, after all. :)

It's a win for me since I can again--in theory--return to my writing since--again, in theory--I will be less exhausted taking daily care of his needs. That hasn't quite happened yet, but it's only been two weeks, so my frequent trips in to see him are only because we have been setting up cable, nursing visits, dropping off medicines and medical necessities that are still shipped to our home, and accompanying him on his myriad of physician visits.

I'm not complaining. Just recording daily life as a Lyme warrior who has a few other co-infections off and on, and a plethora of autoimmune disorders. To make matters worse for myself, when January and February became especially stressful (did I mention my mother has moved in with us too--meaning I am also driving her and her little dog to the dentist, doctors, and vet), I stress ate. Don't judge me. When I'm harried and exhausted, white carbs appeal to me: especially popcorn and butter toast.

I'm still making plans and canceling them. I have only a couple friends left who seem to understand this bizarre condition of mine. But at least my husband completely gets me, or at least supports me and loves me despite my being prone to needing about 48 hours of rest for every handful of hours of activity.

And I plan to return to Anna McGrory's exciting life as a Lyme warrior and amateur sleuth. When I last joined her in unlocking her journey into Book Two of my Lyme Murder Mystery Trilogy, she was about to identify a body. She's afraid it's Frank, which should be just bones by now since it's been over a year since he was murdered. She wonders if there's a real-life Dr. Brennan (on the TV show Bones) who could be called in to make a more accurate I.D. But maybe it's not Frank's remains, after all. I left off just as she and her nephew were approaching the morgue, so I don't know who's in the drawer either. I can't wait to find out!

This rambling post is to say that I'm back. The writer me, that is. I've actually never gone anywhere. I simply got distracted by real life duties that have landed me on the sofa for far too much recovery time. But look at me now: a new post. Maybe the next will be to update my progress on the next novel. I can only hope so.