Why the Government is Suppressing the Lyme Disease Epidemic

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Hello, everyone!

I know it's been a long time since I've posted, but so much has happened. First, I was able to go into a remission state...still very tired, still had aches, but there was no difference in if I was on my antibiotic pulse cycle or not -- I was stabilized no matter where I was in the cycle and was starting to feel so much better, ready to join the gym.

SCREEEECH! I got noped out of that, but for good reason. If you're going to put your life on hold, do it once if you can. Let's get as much out of me as we can. It's virtually impossible to be Lyme-free, but the fewer bacteria hiding out in your body, the better chance you have of fighting off the flu or other such things without Lyme coming BACK out of its lair and going.

So, on to the next phase. Let's get sick again by dragging out the spirochetes who had built "houses" around themselves, called biofilms. With any luck, for me this phase will last a year. I'm about a third of the way there. And then who know what will happen? Can't think that far ahead.

To do that, I'm taking things that dissolve their homes ("a plague on both your houses!" ~~ Mercutio, in the most incredibly awesome Baz Luhrman version of "Romeo and Juliet") and let the antibiotic pulse cycle start its killing again.

(It helps to keep your humor up, and books and movies handy when you're actually capable of comprehending what you're reading or seeing, let alone keep your eyes open!)


The result...you feel like holy hell. But even in this, I can see improvements, small, but there, as I track my symptoms daily, as should you). I've discovered that something is giving me hives for a few days. Tracking that. I discovered that weather has a HUGE impact on me. Yesterday my elbows hurt. Whoever heard of that? But tonight, I'm up, writing, and hoping to take the family to the movies tomorrow. That is the ONLY thing I have planned, by the way. I've learned the hard way not to push too hard when I feel more normal. You pay for it dearly the next few days.


And of course, any spare time I spend with my family, because I never know -- none of us know -- how much time we have, and I'll be honest. I'm fighting a hinky gallbladder (surgery September 8th...more on how that relates to Lyme later) AND lyme, and I've told my husband numerous times, "this must be what dying feels like". Then I try to close my mind off from that and imagine living a long, fulfilling, healthy life.

That being said -- it is more often than not that it's VERY difficult for people to even begin proper treatment. It shouldn't be that way.


I found this short clip, and I hope you take five minutes to watch this. It explains why the government is suppressing Lyme disease. There are far more reasons, and they get more and more complicated, but this is a quick, simple explanation.


Apparently there's no money in making people well.

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.