A Lyme Chapter Stuck in Edits

edits.jpegToday begins the story that I couldn’t (and wouldn’t) openly share with the whole wide internet  because it isn’t my story to tell. With permission and careful rendering, I’m coming out with a chapter that has been stuck in edits for almost a year.

Last fall, as part of my comprehensive lyme treatment, my doctor insisted that she also needed to test Jim for Lyme. (My personal version of  lyme had bypassed my joints and tendons to take up residence in my liver and kidneys. I didn’t understand why testing Jim, who had no issues with his liver or kidneys, could make a difference to my treatment plan.)  And then she explained that couples can “share” lyme. You know… the way couples share things.

therapy.jpegWell, crap. And that’s all I’ve got to say about that. For now.  Until we warn our kids and set up some  therapy appointments.

When I approached Jim about being tested for Lyme, he was relieved to turn the research over to the experts. (In our case, the experts are “LLMD’s” – Lyme Literate Medical Doctors.)  He had been scouring the internet on his own for answers for what seemed to be constant, but separate issues for over a year.

When we finally added it up, it seemed extreme to us that in the span of one year, he could develop hypoglycemia, frequent episodes of gout, recurrent heartburn, a strange, creaking neck pain, but most disturbingly, issues with word recall. He was repeatedly reassured by his medical team that these were isolated issues, each with an independent explanation.

Jim and I knew before the lab results were in that we had an answer.

JHoneyim had Lyme disease. As I wrote in May, Lyme doesn’t just give you one “disease.” It’s not like strep throat where a course of antibiotics knocks it out. Once you get a positive Lyme diagnosis, you have to start looking for the possibility of hundreds of different infections you could have been given, triage the most severe ones, and commence treatment. I remember calling him when the tests came in, and it felt like I was giving him good news. How twisted is that?

bulls eye

With a label like this, you’d think more of us would have the rash. You are lucky if you do!

 

Like me (and over 70% of lyme patients) Jim cannot recall having a tick bite. He never had a bulls-eye rash, because only 30% of people in the U.S. actually have that rash. But the number of symptoms he experienced suggest that he had been living with Lyme for at least three years. Wanna take a guess as to when my health really began to decline?

A diagnosis of Lyme is never good news. But finally having an explanation for a set of symptoms that makes question your own state of mind offers a giant “TOLD YOU SO” to practitioners who patted you on the head and sent you off with Tums.

hindsightFor us, relief and grief were knit together, with shock and fear intertwined. How were we to write the next chapter of our future while fighting a disease that threatened our future? And if you go back and re-read last year’s blogs with this year’s knowledge, our struggle (and erratic posting) makes a lot more sense. Stupid hindsight, instigator of regrets.

The next chapter is not my story….but because nine people have been tested and diagnosed as a result of this erratic little blog, Jim has bravely offered to tell his story – because it is very different from mine. And because we want to shout to the world the fact that no lyme diagnosis is the same.

We were devastated to learn that you can have two people in the same house at the same time suffering vastly different symptoms, caused by the same enemy.

And by now you can probably tell that I’ve moved from embracing to being pissed. I promise I’ll try again. But now, I will turn this blog over to my very own Iron Man.jennyandi

 

2 thoughts on “A Lyme Chapter Stuck in Edits

  1. Pingback: Jim’s Story – Part 3: Coffee Done Right | Embracing Plan B

  2. Alina Miller

    Hi Jane! I really enjoy reading your blog, your style, your sense of humor, your unstoppable optimism 😊. I’ve found the information you’re sharing really fascinating and very helpful, particularly for people who are dealing with very similar issues on every day basis.
    I also have an autoimmune disease, PSC (primary sclerosing cholangitis), another autoimmune disease and recurrent UTIs among the whole bunch of health issues. And today my urologist told me that I have interstitial cystitis after I have battled an infection after infection. And like in your case, antibiotics help within 24-48 hours, but one can’t continue antibiotics constantly (i’m taking them for over 5 years practically a course every month).
    So I wanted to ask you about the contact information on your interstitial cystitis practitioner in Washington. Most likely I have Lyme disease and coinfecttions for number of years because of many GI issues I experience every day. My liver disease progressed to cirrhosis with portal hypertension and esophageal varies (they obliterate them via endoscopy now).
    So all this long story just to ask you for the information on the practitioners who you’ve found the most helpful in your case because our stories are somewhat similar. And any information you’ve found useful I’d really appreciate.

    Respectfully,

    Alina Miller

    Like

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