I am not better

The past several weeks have been sobering. From the beginning of my treatment, the hope was that I would be better by summer. We are now halfway through summer, and it is very evident that is not going to happen. Last week, I passed the 10 month mark of being debilitated by Lyme, and it looks likely that I will hit the one year mark before I see “better” days.

My second MRI showed some inflammation of the brain. It is not an emergency, but it is something that is worth following up with a neurologist to keep an eye on. My progress has stalled. My symptoms over the past couple of months have not improved in intensity or frequency. So it’s time to make a change.

I am discontinuing three of the drugs I am taking, as I have been on them for a while, and the bug is probably getting used to them. I’m staying on one that I started more recently to give it a chance to do some Lyme-killing. All of my supportive supplements, vitamins, enzymes, etc, remain.

I am heading into the next phase: NEEDLES.

IMG_20150725_092436

New home decor item. Doesn’t really fit in with my design vision…

For supportive measures to help boost my struggling immune system, I have learned to self-administer B12 shots on a weekly basis (hence the sharps bin), and am beginning regular nutrient infusions via IV at my doctor’s office.

IMG_20150717_113339

First nutrient infusion

As for the bug-killing front, I am faced with two possibilities: 1. Twice weekly antibiotic injections at my doctor’s office to accompany infusions 2. Having a port installed in my body so that I may administer my own IV antibiotics at home, with the help of a visiting nurse

I am mulling these options, and doctors are conferring as we speak. Both treatments have been known to yield great results with Lyme Disease patients like me – patients with a “tough case” and neurological problems. Both treatments sound just about as fun as banging your head against a wall.

The injections sound less invasive, and therefore preferable at first glance, but my doctor’s office is at least an hour’s drive away (traffic being unpredictable, and often terrible), I have a young child, and I cannot drive myself to/from these appointments. Also, my research about these particular injections revealed that they tend to be very painful, and have to be administered SLOWLY into your ass over the course of 5 minutes – you can’t make this shit up. I mean, sure, twice weekly, painful shots in the bum are preferable to Lyme continuing to eat away at my body, but, um…ouch. Add in the infusion time, and I would basically be spending one and a half full days per week on these appointments, and would be depending on others for the transportation. I also have no idea where my child would be during this.

The port is scary because it is inserted in your body, but the convenience of doing the treatment at home is tempting. All along, I hoped I would be one of the “lucky” Lymies to avoid IV antibiotics, and now here I am, viewing an IV as a somewhat favorable option. It seems like the port would allow me a little more freedom, and save me a lot of extra needle poking. My family fears the risk of infection. I fear the reality of it all.

Whichever option we choose, it is going to be intense. The herxheimer reactions are likely to break my personal records. But hopefully, hopefully, hopefully, at the end of whichever path we choose, I’ll be a lot “better.”

In the midst of all this, it is my birthday. I turn 30 in a few days, which is a birthday I have looked forward to for a long time. I have wonderful plans this weekend with friends that I truly am looking forward to. I would prefer not to be celebrating with this hanging over my head, but such is life. I write this all out here as a way to continue to process it, and to hopefully help me put it out of my mind for the rest of the weekend, so I can have a nice birthday celebration. Next week will bring decisions and more needles. This weekend, merriment. I can do that, right? I hope I can.

Sick on top of sick

A couple of weeks ago, I was doing okay. We even went out of town for a few days, and with time for rest, I really enjoyed myself and was able to “keep up” pretty well. Then it happened – The Stomach Bug. Dun, dun, dunnnnnnnnnnnnnnn!

Oh, it was ugly. I’ll spare you the details, but I was left with a very empty stomach, an aching body, and the overall feeling that all of my Lyme symptoms were cranked to 100. It took me nearly a week to be able to eat normally again. My stomach was pretty much empty for three days.

Empty stomach means no pills.

I went from 40 pills per day to ZERO overnight. Between recovering from the bug, the dehydration, the lack of nutrition, and going cold turkey off all of my pills, I was a HOT MESS. I contacted my doctor to find out how best to get back into my meds routine and was advised on how to add them all back in. I am currently still in the process of this, and getting to relive the side effects (like queasy stomach) that I had the first time I started taking each one as I add it back in.

A 24 hour bug that I’m still dealing with nine days later. That’s sick on top of sick for ya.