Yes, yes I know. I’ve been slack in updating lately. I fully acknowledge it! The last few months have held so many ups and downs that I’m exhausted just trying to think about it. Trying being the key word there, as I’m already exhausted before even trying to think. Quite a conundrum, I’d say.
So, wow. Six months of treatment for my Lyme. I’m still trying to wrap my mind around it. The hardest aspect of this update is accepting that just a few months ago I hit the point where I felt as badly as I had last winter in November and December. That’s huge. I hadn’t felt like that in all of these months. And I hit this low while I was off my antibiotics. Am I really getting better yet? I don’t know. Right now, I don’t feel like I am. But I’m holding onto my favorite affirmation: Everything is getting better every day.
Today marks the end of my first week back on antibiotics after my Mayo experience. I’m still not feeling quite myself. I feel a disconnect between my mind and my body. My brain fog is insane right now. I can’t keep a thought in my mind. I’ve got a constant headache, and I’m so very tired. It feels as if it take a huge effort on my part to accomplish anything.
I have accomplished a lot lately, but perhaps I took too much on. Again, I don’t know.
My LLMD feels that being taken off the Levaquin is what finally brought my intracranial pressure down. She’s comfortable putting me back on her treatment plan, but we’re proceeding cautiously. I wish it could be more aggressive though. I want to see the end of the tunnel, not just know that it’s there. You know? So currently I’ve got a week on antibiotics and then a week off. I see her again on the 14th to check in and learn what will come next. She’s keeping an eye on my adrenal functions now too. I’ve begun taking a low dose of licorice extract each morning hoping to up my cortisol levels. Their low functioning might be what causing some of my deep fatigue.
In the meantime, my eye specialist isn’t completely assured by Mayo’s findings. I go in to see her on the 15th, and will hopefully be able to start lowering my dose of medication controlling my spinal pressure. We’ve found that many of it’s side-affects are actually my Lyme symptoms. It would be nice to know which they’re being caused by!
I’m still enjoying the time at my cabin. It’s been so wonderful to be out of school and able to relax finally. At the same time, it’s been a bit overwhelming so far. The sound level is tough. Loud sounds cause my dizziness and nausea to increase. I’ve got super sensitive hearing as a symptom. Hopefully I’ll still be able to be myself and have some fun with my family this week!
Peace and healing, molly




8 comments
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July 1, 2009 at 11:29 pm
Dan
Hang in there Molly. Rest up and relax, hope you feel better soon.
July 2, 2009 at 10:33 am
dizzygrl05
Thanks Dan! I’m doing my best :) Of course, the bad weather up here isn’t helping. I wish I could be swimmmming!
July 2, 2009 at 10:48 am
murphyblue
I wish I were swimmmmming tooooooo!!!!!!!
July 2, 2009 at 10:50 am
murphyblue
And hiking and biking and geocaching and other stuff too!
July 2, 2009 at 8:42 am
Laura
Hang in there, sweetie! I’m convinced that the end of the tunnel is closer than we sometimes might think…
“Healing takes courage, and we all have courage, even if we have to dig a little to find it.” Tori Amos
July 2, 2009 at 10:54 am
dizzygrl05
Thanks mom! I love the quote! And I hope it is…
July 2, 2009 at 7:00 pm
Dr. Jemsek - Lyme
Sorry to hear that you are still feeling so sick. Sometimes it takes just the right combo of antibiotics. Lyme attacks various places in the body (different for each of us) and once it get into the cystic form, it can be very difficult for the antibiotics to penetrate. Have hope, most lyme sufferers find relief eventually. Saying prayers that it is sooner rather than later.
Tina
July 4, 2009 at 10:29 am
dizzygrl05
Tina, thank you for the kind words of encouragment. A reminder of hope always brings me back to a better mind-set.
Warm wishes, molly