Wednesday, October 14, 2015

A new Lyme doctor, and how to divert panic

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I haven't written my story about contracting Lyme disease, but will soon. What I am excited (and nervous about) is an doctor's appointment at Jemsek Specialty Clinic on October 27th.

Dr. Jemsek came to my attention after watching the documentary Under Our Skin, where they showed a brutal hearing which denied Dr. Jemsek from treating patients with Lyme disease in his practice in North Carolina. The award-winning documentary is worth a watch for everyone. If you don't have an hour or so to watch, please do watch this seven-minute trailer (which features Dr. Jemsek). It covers a bit about how many infectious disease doctors, and in fact many doctors in general, do not believe that chronic Lyme is indeed a disease.

It was an incredible blow not just to him, but to the community and the US at large, as many Lyme sufferers drive crazy miles or even fly to see a doctor who has dedicated their life to helping people manage this miserable disease. Dr. Jemsek is about two hours from us, but Rick has a co-worker whose entire family has been treated by his practice, and after research on the few doctors within a two to three hour radius, we decided to try Dr. Jemsek. For one, he's one of the few doctors who is fine with advertising his name. Most LLMD's don't want their names mentioned, on blogs, even in private Facebook groups. I can't imagine the anxiety they feel when an insurance company calls to let them know they are under investigation. During my two years with my doctor, many things changed. More and more things had to be brought to office, such as simple vitamin infusions.

I had a wonderful, WONDERFUL Lyme Literate Doctor (or LLMD) who retired this year. My hope is this doctor will open their own Lyme clinic, because this person was incredibly dedicated, studied up on everything to be found, was involved in important studies, and in general saved my life. As I'm closing in on the last bottles of medication and have completed two drug trials, Rick and I realized I needed to have a doctor, even though I feel I'm getting better, because who knows what will happen?

The past few weeks have been a bit rough, and I'm embarrassed to say my mood has slid with it. This, of course, is normal. But it sucks and it sucks hard. Even above the near constant pain and fatigue, my biggest problem is I can no longer make plans. I'll lie in bed at night thinking, "OK, tomorrow I will do X, Y, and maybe Z." I've been careful to make these plans doable. I've said "no" to things I desperately wanted to do, but after hitting my head against a wall for a long time, I realized, I HAD TO ADJUST MY ATTITUDE.

If you know me one iota, you know that's difficult. I'm stubborn, prone to the dramatics, serious Type A, and I want things to get done NOW because I have approximately 20,329,323 ideas that I want to start NOW NOW NOW.

So that's it in a rather large nutshell. New doctor in a couple of weeks. Fear because I have no idea what will happen. Anger and disappointment when I can't be ME. Yeah. That.

I'm sure those of you reading this blog can understand, as you're fighting your own battles, too, or are caring for someone who is. My over-simplified advice is to hang in there. When things start to give you panic attacks, divert, divert, divert. Read a book you've read before but know you love. Watch a movie you've been dying to read. Order a set of high-thread-count sheets (ohhhh, that's a life changer. Swoon.) But change directions. Get up and go into another room if you have to. But divert, like I'm doing now, writing.

Love to all.


  1. So so so so nail on the head. Especially the part about the anger when I can't be ME. Gawd I've been there! But you've also nailed it when you say just hang in there.. even though it's a bitch sometimes.

    1. Red, I would LOVE your account of you time with MRSA. Yep, it's invisible, but it's a killer, and no one seems to realize how easy it is to get (WASH YOUR HANDS, NURSES AND DOCTORS!) and that if you've had MRSA, you should always be put in a single room should you have to go to the hospital (heaven forbid) for anything. Doesn't matter if it's not MRSA related -- your immune system has been seriously compromised and the doctors need to get that straight!

  2. I wish you the best of luck with this doctor! I do not have a chronic disease, but one of my best friends for the past 30 years has MS. It took 10 years to diagnose. She had two major surgeries...that she did not need, as she kept getting misdiagnosed . Her MS is progressive and recurring. It has affected her heart, as well, and she has suffered through multiple heart attacks. If she did not have a pace maker, I know for sure she would not be here today. Will keep you in my prayers, as I always do!

    1. Even writing about what it's like to be a friend or family member of a person going through this is VERY helpful! Give it some thought! You can leave names anonymous, and be as candid as you like. So much is out there about the disease (and lots of contradictions) but not as much about what it's like to be on the other side.

  3. I too wish you the best of luck with this doctor. Our area is the one which is most aware of Lyme disease. We are near Lyme, CT where it was first identified and we have had it for years with great and difficult repercussions and side effects. Howerver at least our doctors and our community take it seriously, as it well should be! love, jean


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